Autism and AuSanity

It’s been a minute

2021-12-04T22:41:00.001-06:00

Well, hello all! It has been a minute or two since I last hopped in and wrote something. Blogspot became blogger, and my associated email address was not originally a google one, so it took a bit… I still write, and wrote my thoughts down, just not in an electronic format. I am pretty open and transparent with most things, so I also avoided posting things online for a bit. I went back to work some time ago and had to double check that things were kosher before I contributed to a blog again.

So, today, my beautiful, wonderful Cam is 12. He is now taller than me, skinny like a string bean, speaks non stop about his preferred interests, and has hit middle school. I read the blogs I posted previously and honestly, we were all in such a dark and lonely space. If I could go back and tell my younger self anything, I would provide assurances, that yes, life will get better. Getting out of the house and working again was probably one of the most significant positives in the past few years. Somehow, our family unit has come out of that dark place stronger, more united and more stable than ever before.

Cam began ABA therapy during his kindergarten year, and although there is a lot of controversy surrounding the therapy in a lot of groups, it has been a lifesaver for us. I did my research, vetted a company that aligned with what we felt ABA could do, and went from there. It took genius level planning and strategy to even get our son that therapy, and hands down, has been amazing for our family. It was like weaving an intricate series of things together to make it attainable for us. I mean, cash rate was going to run us about 1500 a WEEK, and that wasn’t gonna realistically happen.

Most insurance providers won’t cover ABA, although, I seriously think it boils down to some bigwigs looking at bottom line health costs vs. what is morally right. No one collective group.at the time had raised a big enough stink about it. I mean, if we were dealing with pediatric Cancer, it would have been expensive but somewhat covered. It would have been political suicide otherwise.

Fortunately, I did my research and found some actual laws in my state that mandate things for autism insurance coverage. I then found out that coverage for something was in my reach, as long as I got a job working for a state entity. I hunted down grant money, we spoke at public events. We met with Senators and Congressmen, sometimes by appointment, other times by pure dumb luck. ( One Senator had no clue what was in store for him when he hopped in his Lyft and guess who his driver was? THAT was serious luck, right there.) Guess what has happened in my state? Medicaid began covering things like ABA just recently, and although it doesn’t help me individually, I would like to think that my voice along with countless others contributed to finally seeing a change in the tides in regards to HOW someone with Autism is worth the investment. Us parents and caregivers can see it, but explaining it in terms of “just the right thing to do” doesn’t seem to cut it these days. So, find something that they can get behind that also makes them look good… those with Autism are worth the investment because if given proper tools, they can contribute to society in the following ways…..” Google it, you will notice a slew of articles about companies seeking out higher functioning adults like Apple, Google, Microsoft. I figure whatever way works to get things covered….at the end of the day, everyone is better for it.

I am glad these changes are happening, and that perceptions are shifting. Now that Cam is older and more self sufficient, I get to enjoy being “Mom”, instead of feeling like a fireman dousing the flames to a wildfire. Things are going to be different, but we have adapted fine. Focusing on goals, one day, sometimes one hour at a time helps, and we even talk to Cam about those goals and seek his input. We are looking at ways to allow him to self advocate. Who better to learn from than someone that is faced with the day to day challenges head on?

Things that he wants are so varied. He is still very child like in his interests, but, hello? He’s 12. He likes riding bicycles and tells me about popping Ollies on his skateboard. He wants friends desperately. We do what we can, but it seems most of his friends are really Casey’s friends. Casey is still his very best friend. He is in a special Ed classroom with a few hours a day out with general Ed kids, but it isn’t the middle school experience of a typical kiddo. I am ok with it for the most part. Middle school is rough for everyone, and I don’t know a single soul that will say otherwise!

Planning to do things has become immensely easier, and along the way, we have found people that are true friends of the family. There for a while, we were like a dumpster fire. People steered clear. We surround ourselves with a network of people, some from the special needs community, but most from outside that world. It is emotionally and physically taxing to always be in “battle mode” and it is nice to talk about things that interest us beyond parenthood.

One last thing… the pandemic. For us, it wasn’t as bad as for other people. It was almost like a “welcome to our world” moment for some of our old work associates and neighbors. After a few months, a lot of people finally understood what we were saying about the need to connect with others. We were used to being a bit isolated, so it was all status quo. We masked up, washed religiously, and went out ONLY when we had to. My work was strictly from home, but there were times when food/grocery-delivery didn’t work, or prescriptions needed to be picked up. It wasn’t often, and if you were to ask any of our friends if they would have suspected us to be living the non masked life, they would have laughed in your face. Then, my husband got ill. We don’t know if it was when he went to pick up his prescriptions, or to put gas in the car one day, but he caught Covid right when our city was spiking and running out of hospital beds. He, of course, showed symptoms first, then the rest of us came down with it. Friends, co workers, neighbors, acquaintances all contributed in a way we had never seen. I didn’t have to cook for nearly the entire quarantine, which was good, because my husband was hospitalized for a week, clinging on to life. I’m not joking, either. It looked really rough for the first 4 days. He still has lung damage to this day. My kids, they were fine after a day or two with only mild fevers. I was so tired, I could hardly stay awake more than a few hours a day. I monitored myself with a pulsoxymeter and FaceTimed frequently just so another adult could monitor me and make sure that I wasn’t going to end up passed out and unable to take care of the two children at home with me. I had some slight flashbacks to the times of my stay at home mom life and thanked the heavens above that they could make Mac n cheese, pb&j sandwiches, pop popcorn, heat and eat food deliveries and wash a dish or ten.

So, that’s an update on us. I’m sure more will follow at some point, but figured I gave you enough to chew on for a bit.

Until then…

Autism can have an impact on siblings, too.

2016-08-20T00:17:00.000-05:00

For our younger typically developing son, two worlds are about to collide soon.

At home, he is a natural leader and often takes on a role most often found in oldest siblings. He shares well with his brother, is compassionate, and a natural teacher. He was the one that was able to finally show my older son that underwear was MUCH better than a diaper, for example. Therapists, teachers, relatives, even other children tried. There is nothing like a little sibling rivalry to conquer that hurdle! At school, my youngest is friendly, talkative and sometimes too smart for his own good. He is an attention seeker, and I feel somewhat responsible for that. We have tried to balance out time between the boys, but let's get real for a second. It is all but impossible to split the time spent with each child in a fair and equitable manner when one child has special needs that requires direct and immediate assistance at all hours of the day or night. For those that are parents, you could equate this to having a newborn baby with colic and every time you turn around a new life threatening danger appears out of the blue while your other child can at least dress and feed themselves. Any parent raising a child with autism will tell you that there is NOTHING in this world more stressful than when your child is in the middle of an hour long meltdown, except maybe being shot, stabbed, or lit on fire.

He starts kinder in a few days. This year, he will be at the same school as his older brother. Last year, he was able to go to pre-k, but it was at a different campus. A few of his pre-k buddies will be moving over to his new school, too. This year, my sons will run into each other in the hallway, and of course, my youngest will probably joyfully associate himself with his very best buddy and brother. I don't know how he will handle it the first time another one of his “friends” says something negative, or he gets teased about it. Yes, it will happen eventually. Maybe not in kinder, but it will happen, rest assured. I hope and pray that when it does happen, he has the maturity, strength, and coping mechanisms in place to help guide him.

We have always been publicly open about Autism, since the day our son was evaluated. If you were to be around our oldest, you would know that most people know that something is different within a few seconds of direct interaction, so it was never something we could be discreet about. Outside observers may or may not pick up on those telltale nuances from just a glance, since there are no physical signs of a disability.

Our youngest was 3 weeks old and in the evaluation room during our oldest’s observation, so he has been right there the whole time. He has never really known what it is like without Autism in our household. Now, his world at home, and his world at school will be one in the same. Children and adults will naturally compare them. I know it happened many times as I grew up with my two younger brothers.

In following autism sibling studies, and reading ways to support those siblings, one thing keeps jumping out at me. There will come a time when our youngest will be embarrassed of his brother for something he cannot prevent or help. As an adult, I have battled this very issue head-on. Examples would be when some stranger has purposely made it their mission to attempt to embarrass, mock, or chastise my son or my “parenting skills” in public. I stopped counting these incidents when they reached past a dozen. It certainly has had an impact on how much we can go out in public, and I hate that it has. After a while, I learned that there is NOTHING to be embarrassed about. My close friends and family have seen the prayer, devotion, sheer willpower, heart, dedication, drive, and perseverance that has gotten our family to where we are. Not to mention the tens of thousands of hard earned dollars spent on therapy. You don't even have to know us all that well to figure out that our children and their well being are our main priorities in life.

I pray that my youngest doesn't have to battle the “embarrassment factor” at least for a little while longer. Sure, being embarrassed of your sibling is natural, but not for something like a disability. This is where a huge oppotunity exists for society to improve. The adult that gives me stink eye across the room as my son flaps his arms wildly and barks like a dog will likely also be someone that tells their child or grandchild about the “weirdos”, or may even use the term “retard”.

Most people are pretty understanding when they see a child in a wheelchair, or other physical signs of disability. That is why there has been such a push to educate and inform the general public about autism and other mental health conditions. They are the silent, hidden disorders affecting more of the population every day. Maybe the approach isn't an educational one, but one of true compassion for mankind without having the knowledge of every disorder under our belts. Maybe, we can just try to be better, more accepting human beings. Maybe, the world would be better off if we did things like not judging others.

Sometimes, how a child reacts is directly related to what a parent teaches and models in their home. It isn't always the case, but if we wish for a better world, we must first look within ourselves and find the courage to change for the better.

If you are an Autism parent with more than one child, I highly encourage you to take a moment and think about the impact autism has for your entire family. Find out great ways you can help yourself your spouse, and siblings. Autism doesn't just affect the person diagnosed. I know there are several resources and guides, but here is a link on some you can get for free related specifically to siblings and parents. Also, check autism speaks for the sibling guide as well. Your entire family is worth it . http://www.researchautism.org/family/familysupport/SiblingSupportInitiative.asp

Autism in the headlines

2016-07-23T01:33:00.000-05:00

Autism is a mysterious thing. There is so much to learn for society, parents, and those living with Autism. I am just a mom raising two boys. One child is typically developing and one is anything but typical. The developmental gap between the two widens every day. With one child, I know there will be challenges like the first time he goes on a date, decides his mom and dad aren't "cool" anymore, and the birds and bees talk. With the other child, we are blazing a trail. Will I ever face those same challenges? At this point, it is a resounding "I don't know".

I frequently look for inspiration and hope amongst other parents raising children on the spectrum. What I often find is that society as a whole isn't equipped to handle the Autism community. Two recent stories in the news this week alone prove my point. In Florida, a behavior therapist is shot in the leg after he chased down a 24 year old man with Autism that had escaped from a group home. When pressed, the officer acknowledged that he intended to shoot the man with Autism after he did not comply to requests to lay on his stomach. The 24 year old man was playing with a toy truck. The therapist repeatedly stated that it was a toy, that the man had Autism, and that he was NOT armed. This is a tragedy for all involved, including the officer that shot the therapist. I think if a 24 year old man is living in a group home and playing with a toy car, it is pretty easy to assume that he probably doesn't have the mental capabilities of the average 24 year old adult male. With that said, the police department has publicly stated that the call they received was for an armed suicidal man and the officer made a split second decision. This miscommunication about a weapon by dispatch could have cost both men their lives, and will probably cost a police officer his job.

What could have prevented this? It is easy to look back and play armchair quarterback. It is NOT as easy to come up with the solution. Another story in the headlines is closer to my home. A 7 year old girl allegedly eloped from a hotel room that her mom, dad, and 4 siblings were staying in on their way back home from a vacation. She left in only a pull up diaper while mom is reported as saying she was using the bathroom. The girl was found the next day in a lake close to the hotel. The only information being discussed at this time is through the words of the parents and their lawyers. They are now suing the police department for the handling of the call. I look forward to the details of the case, but at present time, the other 4 siblings are in CPS custody, mom and dad were interrogated for hours, refused to allow them to search for the girl in the area, and the room and all their belongings were searched and seized. I don't know what the typical local police protocol is for a missing child, but what I do know is that there is training available for first responders when it comes for children with Autism.

I sat through this training as a worried parent in 2013 during an Autism conference held at my regional educational service center. I remember one statement made by the speaker. He stated that he gave this same seminar to first responders all over the nation. He stated that local police/fire/rescue services had to request the training as it was connected to the National Center for Missing and Exploited Children and had federal rather than state funding. Did that local police force have this training? What about the police force in Florida?

What would have changed if they knew that about 50 percent of people with Autism will elope. That these kids are notoriously sneaky and will wait for the opportunity to get out and explore. What would happen if officers knew how to approach an individual with Autism correctly? I live this every day, as my son makes frequent daily attempts to "chase air conditioning units". Not every elopement ends in death, but 90 percent of all fatalities that occur during elopement the is due to drowning. More will probably unfold in the coming days, weeks, months on both of these stories, but one thing is very clear. More needs to be done to educate, inform, and assist. For more information see the linkMissing kids

I don't know how you do it.

2016-03-13T13:16:00.000-05:00

"I don't know how you do it". Just one of the questions we frequently get when we talk about raising our oldest son, Cameron. He was diagnosed a few weeks after he turned 2 with an Autism spectrum disorder. It wasn't easy to even get to the diagnosis, as we were both in huge amounts of denial, yet our son needed help. My husband and I researched and learned a lot of things in a short amount of time following diagnosis. He performed WELL below the "normal" range in a lot of important categories. He even performed in the less than 1 percentile in some areas. As lifetime overachieving parents,
we dealt with plenty of tests in our lives. Testing in school, testing to get into college, testing for certifications. We had pretty much always done well, passed, and been in the top tier of things. Personally, I never wondered what being in that bottom tier felt like. I mean, SOMEONE somewhere had to be the lowest performing. Now, we are learning as parents what it takes to be at the bottom. In the "least of these" category, if you will.

When we tried to wrap our heads around the diagnosis, one thing we did was try to find our "new" normal. What can we expect from this child? What plans do we need to make long term? What are his chances at "recovery"?. The questions snowball you directly into depression. Just like that. You start thinking, " How long can I do this?". "What happens after I die?" Then, "Was there something I did to cause all of this?" It can get really scary in a short amount of time. The internet is a blessing and a curse.

So, what did we find? Based on his level of severity, we should not fool ourselves into thinking he will ever communicate effectively. We should also plan on diapering him well into adulthood. He won't be able to function well in a typical classroom and will need daily supportive services, none if which will be covered under any medical insurance or plan. Your kid will pick the worst junk food you can think of and will eat ONLY that item or select few items FOR THE REST OF TIME. He will be isolated. Some of that isolation will be self induced, but society as a whole will ignore, or gawk, or refuse to include him. It will be next to impossible for a marriage to stay together. You will isolate yourself from society. Prepare to lose most if not all of your friends, as well as familial support. Your other children will loathe him. They will feel robbed of childhood and cheated, only to be left to care
for the unwanted sibling after you die. Don't expect him to ever maintain a job or live independently. He will drain you of your life savings, retirement, and put you in a state of poverty. Want to know what this is? BS. Yes, bull s%#t. Who knows what the future holds? If you let your OWN self limit the potential, then yes, this could be your reality. What we found online looking for answers was the devil's attempt at weakening the miracle in front of our faces. This is the devil trying to tell you that what God has made for you is less than perfect. (Yes, I referenced God and used a cuss word in the same paragraph. Get over it.)

Eventually, we both made it to a place where we had to stop trying to predict the future and just live in the moment. Live in the here and now. LIVE. It is still a struggle every day to get up and push the negativity away. Especially when very little comes easily. The effort, pain and struggle that lies ahead can seem daunting.It is like running a marathon for the first time with no training. If you look at a map of the start and finish, it might overwhelm you. Instead, you focus on attainable goals, or landmarks. You make THOSE your own personal goals. Like the new Marathon runner, we make an attainable goal. We push for that goal. EVERY. DAY. We work on improvement of ourselves as human beings.

The list of things that my husband and I found online about what to expect has become a sort of checklist of things to accomplish instead. We aren't trying to cure anything. We are, however, doing our very best at raising our children to live happy and fulfilling lives. We will continue to push for the finish line of this marathon we are running. We will relish and appreciate every milestone, landmark, and achievement along the way. I am pleased to announce our current progress. Cameron speaks! People understand what he has to say. He speaks in full sentences! His functional language is improving every day. He follows directions, (well, he sometimes refuses like any other typical kid, too.) He imitates and plays with superhero toys, PRETENDING! Cameron knows the difference between happy and sad. He expresses emotions, and has learned some nonverbal communication. He goes to class and is included for some of the day with other kindergarteners.

Cameron had his first night in big boy underwear, and he stayed dry. So much for needing diapers all of his life. He is going to have his first play date this week with a neurotypical neighborhood child. We have made a consious effort to include him in every thing a kid his age would normally do in public. This includes going to the grocery store, baseball practice, football games, school clothes shopping and birthday parties. Sometimes, we have to adapt, but my husband and I refuse to become reclusive. Speaking about my husband and I, we have found that through our challenges, it has made us so much stronger as individuals, but also as a couple. We grew together instead of apart. We do a lot of leaning on God, praying, and leaps of faith. On occasion, we are able to sneak in a new food and have him eat it. Another big thing.... Our boys are literally each other's best friend. Our youngest still does a lot of what other neurotypical kids his age do, although it does take more effort for that to happen. Our youngest wants to do everything with his brother and understands that he is different. He constantly pushes Cameron to try new things, explore the world, and meet new people.

Let that be a lesson to all parents facing a diagnosis of autism for their child. Do not let a doctor, the Internet, a family member, or yourself put limits on what your child can or cannot do. You will create your own goals. Each child will be different, so you should not compare them to any other. Persevere and fight EVERY DAY. Be hopeful and optimistic about the future. If today was particularly rough, be hopeful that tomorrow will be better. In those moments of desperation and struggle, just know that you are not alone. There are networks, and groups across the nation, and even globally that you have access to at your fingertips. You will find a brother/sisterhood amongst other parents raising kids on the spectrum. There will probably be some philosophical division amongst each other, but don't let that divide you. No matter a person's approach at doing something, the intent is the same.... To benefit their child.

To answer the question, "I don't know how you do it", How WE do it is by setting a new goal every day. Persevering, taking leaps of faith, challenging our own perceptions as well as other people's perceptions of what autism looks like. We wake up every single day by the grace of God. We push ourselves farther than we ever thought we could. WE stay united as a family. It isn't a single person's achievements, but a husband, a wife, and two children that refuse to leave someone behind. We have a support group of other families all over the world, and a movement that has started to shape the world in the form of awareness and acceptance. We are changing that list of "cannot or will not" into "watch me and just try".

“The man who moves a mountain begins by carrying away small stones.” ― Confucius

Legacies a grandmother leaves

2015-05-10T23:41:00.001-05:00

I have been fortunate. I have my mother still alive and well and across town. This isn't the case for everyone. Mother's Day means a lot to people. While I love my mother dearly, and recognize some of the sacrifice any mother goes through, I wonder how she is handling things. You see, HER mother has since passed on. It has been 7 years. I cannot imagine how difficult it has been for her, my aunts, and my great aunts in dealing with this loss in their lives. All I can do is show how her legacy and teachings Continues to live within me. Hopefully, my mom, aunts and great aunts will feel enlightened and uplifted in some way.

I remember sitting in a Las Vegas hotel room on vacation with my husband when the phone rang. It was my dad. He told me the news of her passing. I slowly sat down on the bed and my dad began going over the details. I had seen her in the hospital 6 days before. We had a great conversation, that last time. I visited her at least once every two days since she was admitted. She had an aggressive lung cancer and I think we all saw the writing on the wall. I sat in the room that last time visiting her. I regretted not being with her while my husband and I went on our mutual "birthday trip", but tickets had been purchased and I really thought she would be around the next week.
When we got back, it still wasn't "real" for me. It wasn't "real" at the funeral since she was cremated and I didn't get to see her famous chocolate brown bouffant or hold her hand with her long graceful fingers wrapping around mine. It wasn't until I was asked if there was anything I wanted to keep of hers. I chose to keep a pair of gold star earrings. They were piercing studs. She wore them almost every day that I can remember in my early childhood. I wore them too for a while. When I was around age 5, we found out I had "the family curse". Nothing severe, but a unique metal allergy that became apparent shortly after my ears were pierced. She told me to watch ALL metal jewelry and in my older years, Sher made it known that I would likely have the same reaction as she and my mom had had with surgical staples. She removed the mall store earrings from my lobes, cleaned up the hot infected ears, and a few days later, she told me if I wanted to still have pierced ears, to wear those star earrings. They are either 14 or 18 k gold, and to this day, I pretty much have to stick with gold.
Even the nickel free stuff causes a reaction. She took them from her ears, cleaned them up and helped me bget them into my own ears. I wore them for a month or so, and then, they were cleaned up again and went right back into her ears.

I couldn't exactly keep her hair... It might be weird. Keeping her hand might be more morbid though. So, I will go for the earrings. I first broke out those earrings when I was pregnant with oldest, and wore them again when I was pregnant with my second child. I wore them during my 42 hour labor
and subsequent emergency c section. I directly disobeyed doctors orders to remove all jewelry for my scheduled c Section with my second child. I wore them and just tucked the hair net over my ears.

I wanted a little piece of my grandmother with me. She always had my back when things got tough, and I looked to her for an example of strength and grace under fire. She taught me things like proper place settings, etiquette, and manners. She sewed clothing beautifully, and taught me that scratching open the package of cookie dough was NOT baking cookies from scratch despite what I had been told elsewhere. She was also one of the strongest ladies I have ever known. She survived after the lengthy and early death of her first husband as he battled cancer and went through several series of experimental (in that time) treatments for cancer. She continued to raise three young women, two of which were teens and a very young lady at the time of his passing. She eventually found peace and chose to get married to a wonderful man that I would come to know and recognize as my grandfather. She once again had to become primary caretaker and eventually bury her second husband after several years of watching her husband decline due to Alzheimer's Disease. She spent a huge chunk of her life being a caretaker and handling the added stresses of incurable conditions amongst some of the people she loved the most.

I don't know if that is my future with my Cameron, but I still look back at everything she went
through and have a whole new level of respect that I think only those of us in the long term care
taking role could understand. This same grandmother helped me understand what Autism was. Early
on in my childhood, she lived in a wonderful house with quiet neighbors. There were not many young children to play with when I stayed at her house, however. I was introduced to one particular family that lived next door. They had a daughter that was my youngest aunts age and a son who I could tell was quite a bit older than me, but was really interested in playing with me. After playing with him for a bit, I came back to her house and had a few questions. I thought he was weird, did odd things, and because he was male and much bigger than me, I was concerned that he might hurt me. I had two younger brothers that I roughhouse frequently with, and knew that to be a style of play, but I also knew I couldn't play with this boy that way. She very matter of factly told me that this boy had autism. It was rare at that time, and not many people had it, but what that meant was that his brain
was not made the same as mine. She also made it very clear to me that he was not mentally retarded ( a socially accepted and used description at the time) and to go play and make friends. so that is what I tried to do, but I look back at it, and I wonder if I missed a great opportunity to be a kind friend to him and his family. I remember going back to school that week and marching over to the special needs table during breakfast and asking if any of them had autism and if I could be their friend. I was fearless, for a week. i dared to reach out and was in turn outcast on the playground and made fun of. It wasn't just the kids either. I had an elderly teacher tell me that I was wasting my time with " them". I am pretty sure if I had told my grandmother about what was happening, she or the boy's mother would have given me some awesome advice on how to handle that situation. It just never came up, and I think I stopped playing with that boy around that same time. I hope I wasn't mean, or judging, but I think I might have missed my calling very early on in life because I let the influence of others affect what I said and did.

My grandmother wanted to make my wedding gown as she had done for her youngest, but as she aged, She knew her hands could not handle any intricate beadwork. Arthritis had set in. We instead agreed that she would make my 9th grade formal dress. It was my first formal event. We went shopping for fabric, and I learned about fabrics, and sewn in bras, boning, and the right type of
netting. I learned there was special thread for the slick material I chose, and that you could buy lace
by the yard. She told me the order in which to use my utensils, that a boy or man was to pull out my
seat and open doors, or else not to mess with him. She was OH so right. It took me years to learn that the advice she gave me was right on point. Funny thing is, my husband was the first and only adult male I ever dated that did that for me on more than just our first date. That might be actually why I married the guy after all!

She never liked the guys I dated but never let her opinion be known until AFTER the fact, but when I
brought my now husband around before we were ever engaged, she actually told me he was a very
kind and sweet man. That meant a lot to me. The day of our wedding, she wore those star earrings. The same ones I have in my possession today.

My oldest son, Cameron was talked about before he was ever concieved. The last time I sat in the hospital room with my grandmother, she was still giving of herself, and teaching me. She listened to me as I had just come from a doctors appointment myself. My husband and I had tried for 3 years to have a baby and I left the fertility doctors wondering if we would find a solution. She eased my mind, and told me not to worry. That by this time next year, I would probably have a little boy to cuddle. I asked her , well, what if it's a girl? She plainly and as matter of factly as she could told me that I just "looked" like a mom of boys. We joked about that and she said he was going to be such a special child, she just knew it. I laughed, and cried a little and prayed that she was right. We visited about 10 minutes more and she looked like she needed to rest, so I told her to relax, and catch some sleep. I held her hand with those wonderful long fingers wrapped around mine. A nurse came in and gave her some pain medication and she fell asleep. A minute or two later, I slipped my hand out from hers and left.

She passed in July 2008. By November of that year, we found out we were expecting. I was holding
out for a girl and didn't really put much thought into the last conversation my grandmother and I had.
The night before my 20 week ultrasound, I had a vivid dream. Not unusual in pregnancy, but
The dream was a bit odd. I dreamt that I was in the house my grandmother once owned with a baby,
but I was about 6 years old myself. I saw myself reflected in the wall to wall mirror she had in her
formal dining area. The baby wouldn't stop crying, but I went to the butcher block she had in the kitchen and saw a cooling tray of cookies. I grabbed one and burned my hand, but held onto the cookie and blew on it until I could feed it to the baby. I put the baby down in a nursery and it was decorated with the sun, moon and stars.

I woke up from that dream and was just missing my grandma that day so I slipped in the earrings and off to to the ultrasound I went. We had picked the name Cameron the night before, regardless of gender. After we knew the sex of the baby, I wanted to buy everything blue I could get my hands on, so I began looking online at bedding, and hunted down the perfect blue camouflage set. It was trimmed with white embroidered stars on the edges. I figured it was just a 3 or 4 star general thing.... I didn't really connect the pieces until later.

Now, looking back, those stars have become symbolic to me. in July 2009 a little over a year, I did in fact, have my baby boy. It honestly feels like my grandmother has been watching over our family very closely. Her spirit is here with me, and no matter what, I am STILL trying to seek her approval with decisions. I doubt that ever goes away. For now, when I see a star, I think fondly of a lady I had the pleasure to call my Nana. I will teach my kids about how to cook from scratch, proper table settings, and much more. As you look back at your life, who taught YOU to do certain things? What will you pass on to your kids and grandchildren as a part of your legacy?

Who is my son?

2015-04-07T12:38:00.000-05:00

April is here again, and it is autism awareness month. I just placed the t shirt order for our local walk. we use it as a fundraiser for an Autism center that helps kids like mine. I thought now would be a good time to write some things down. This is raw, and honest, and probably not politically correct, but what I say is directly from the heart. This is MY personal journey, and unless you can fully say you walk in my shoes, you have no right to judge. I do want to share this, so that if there is some mom out there in a similar situation, then she knows she is NOT alone.

Around Christmas time, I was asked a very poignant question by a well meaning friend. I was at a Christmas party for a local business group that my husband is involved in. It was probably the first time in a few months that I had been without children. I am pretty open with most everyone of my oldest son's diagnosis. I frequently speak of the differences that exist in our household, some of the common struggles and frustrations and his challenges. This friend simply asked.... "So, you talk about your son's diagnosis a lot, and what he does that is different, but besides having autism, who is he? What does he like? She said she has spoken to a few other families and they always talk about how their kid loves this or that.... Like one kid is really into playing the piano.

I recoiled. I didn't have an answer. See, I have spent the bulk of the last 4 years just trying to survive the craziness. He has daily meltdowns. At least once a week, we have a poop art incident. Some worse than others. This week, my husband got the brunt of it while I was grocery shopping. It is a rare treat when I can do that unaccompanied. Our son pooped in the laundry room. Our dog ate some of it and had it ALL OVER his fur. The dog jumped on couches, ran under a bed, and our son tried wiping with his bare hand and ventured into the kitchen before my husband even knew something had happened. While cleaning up the mess, I arrived home and my son, dressed in his new clean underwear darted past me and escaped down the street to go roam the neighborhood. He is impressively fast, but doesn't think twice about running into roads. I have learned how to (softly)
tackle like a defensive lineman and hold the speed of a runningback to chase him down. His life literally depends on my ability to protect him from harm. It took hours to return to some form of livability for an incident that probably took 2 minutes or less. There is an incident, not always poop related, but something like this that needs prompt attention and takes several hours to resolve EVERY SINGLE DAY. Sometimes it is a self injurious meltdown, sometimes poop, or chasing down dogs that have been let out of the yard. I promise, if everything I have seen in a week could air on TV, it might make for the best comedy/drama/horror show ever.

I expend so much energy physically and mentally just trying to keep this boat afloat, that I haven't been able to look out at the sea and watch a sunset. I don't know what his favorite color is. I try and do the best I can at guessing what toy or cartoon he likes best. Most of what we have purchased for him, he either shows little or no interest, or they are therapy type items... Things that help him calm and cope with the world.

With my younger son, I know his favorite food, color and TV show. I know he loves any sport involving a ball. He tells me about his friends and what he did in class. He has his own ideas on what he wants to wear. He is awesome when it comes to learning about shapes, letters and numbers, and is weaker when it comes to handwriting skills, sitting still, or listening to authority figures. He is bullheaded, go figure!

Things that a mom would normally brag to friends about, I felt I was simply short when it comes to my oldest. I felt for a while that I had to be the worlds worst mother for not knowing these things about my firstborn. I mean, how can I spend so much time around a child and NOT even learn this. That is when I had a revelation. My list is always going to be different, and not exactly explainable or comparable with him. His diagnosis is going to be woven into every aspect of his life, no matter how much I want to just say that autism doesn't "define" him. So, here is what I know about my oldest:

He isn't much of a talker. Less is more. He loves being squeezed, cuddled and softly scratched in the small of his back. When he likes a food, he wants to eat it morning, noon, night, and any time he requests it. At some point, he will lose interest in that food, and the case of stuff you just picked up at Costco is nothing more than a new box taking up space. He still prefers diapers over underwear, but
will wear underwear "if he has to". He likes riding horses bareback. It calms him so much! Jumping
is a favorite pastime, as well as running into walls at high speeds. He gets a kick out of watching motorized things work. Once you think you have put something out of his reach, he is a master at solving that "problem". He loves his brother, his dogs and his daddy, but I am probably not his favorite "unless he is sick or hurt". He is a huge fan of water....Swimming, splashing, water guns, spray bottles, the water hose. He prefers nudity over any type of clothing.

With all of that said, it is a great list, but EVERY SINGLE one of the things I have learned about my son seems to be a "red flag" for autism. So, for me, when I am asked, "other than autism", what kind of kid is he, I don't know how to answer, because it is literally like the books and diagnostic manuals about autism are documenting my son to a T. I may not learn some things about my kid, like his favorite color, but who cares? My favorite color changes all of the time! autism describes my son, his life, likes, interests, and struggles. I am ok with this, because beyond the label is a life. His life. Autism has been Written about and studied for the last century, it is like a mythical creature or unicorn. No one exactly knows what causes it, or can pinpoint specific traits that apply to all people with autism. So, let the label "define" my child with this mythical title. I happen to think my son is pretty awesome.

Surviving Summer

2014-08-17T08:27:00.000-05:00

Last summer, as you may recall was a very trying and difficult time. I thought. I was at the end of my rope. My sanity was hanging on by a thread. I was in panic mode this year, starting in mid march when I knew we only had a little while left before school was once again out. I thought, well surely I have enough to show them that my son needs ESY.
SURELY this year at his IEP, they will see. he was self injuring during his meltdowns and it seemed like the longer he was away from such a structured environment, the worse they got. Well, he ran smack into the corner of a wall during a horrific middle of the night night terror/meltdown and split his face open 2 days AFTER spring break had ended. That kind of blew my theory out of the water I guess. We did take him to the ER and they put dermabond on it since they couldn't stitch it up. this picture is about 30 minutes after it happened, so all of the horrible bruising and swelling didn't quite pop up yet. It makes me cry and hurt just seeing my own babies hurt like that. :(

Poor Baby!

As IEP time came in April, I began to prepare. I send certified mail requesting ESY services. Last
time, I was told.... Oh, no one his age goes to any sort of ESY program and he has done amazingly well this year. I found out later that that was age discrimination and, it shouldn't matter how well he has done, as this is to prevent regression. Oh, how I had wished I had tape recorded the meeting.

Jump forward to this year. There is a new person over the elementary campus that my son attends and she is a special needs mom herself. The end result of my ARD is a few speech enrichment sessions, a week of social skills "camp", weekly updated calls on Cameron's progress over the summer from the head of Autism services for the entire school district, access to the building and finally, a picture calendar with stickers to mark off when school will be back in session. No formal "ESY". The official denial was due to no documented signs of regression. We also did the summer kids day out program once again at the church I teach at. We got lucky and he got a teacher that was familiar with kids and IEPs and behavior issues as well as a teacher that had been his teacher the year before at the summer program. WIN! Here are just a few things we did this summer.

The results: some actual progress was made. His language has done really well, and he is now requesting things in whole sentences. You have to be familiar with how he talks, or how a young child (think toddler) will say words in order to understand him because although he is communicating, the words are NOT clear. Not everything can be perfect, but I will certainly rejoice in this victory! School starts back in a week and so far, it worked. I would still like to see ESY, but he did pretty ok. If he was stuck in the house too long, then both boys became destructive, so I had to keep them occupied. So far, the most major of the damage was a toilet clogged by a candle for over a week before we figured out what he flushed down in the toilet.

I think the biggest difference is the age in which both boys are in. I can now let them out to play
without hovering directly over them, although they still think I am a piece of playground equipment to hang off of, slide down and climb. :/ Cameron still stims frequently with water and doors, but it is much less intense as it was last year. If things are out of sight, then he won't feel compelled to do them.

Also, for both of the boys birthdays, we bought a Coleman jr tent. It is an actual outdoor tent, but we have found that it fits pretty good on Cameron's full bed. Finally, at least for the past 2 weeks, he is sleeping in his own "bed" INSIDE the tent.

Lost

2014-08-15T00:05:00.000-05:00

The biggest scare of my life came this week. I am not being over dramatic with that statement. We had a brief meeting at Cameron's school for this upcoming year. It was not a big deal at all. We did that little meeting, then the kids and I loaded into the car, and rather than drive back home, I decided to take the kids to a different elementary school to let them play on the playground equipment and burn off some energy. The playground has swings, something my son's school does not, plus a fenced in play area.

I pushed them on the swings, and it was still unusually cool. It had rained that morning, but the amount was tiny and the wood chips on the ground absorbed any sort of moisture. It did, however keep the temps livable for a good portion of the day.

We played for an hour, then it was about noon. I had a "special treat" planned. I was going to take the boys to go eat pizza. We left the little fenced in area and we made the trek to the car, which was parked on the side of the street. Casey was closest to me and Cameron was right behind his brother waiting his turn to get in.I picked Casey up to put him in the car. Casey immediately stuck his arms and legs out as far as he could to fight getting in. He screamed, kicked, and was a general terror. It took some coaxing, and I was scared I was going to drop him. Finally, he is strapped in.... On the side closest to the playground. The other side was facing the street. I was going to let Cameron crawl in on the playground side and I would strap him in so that I didn't have a child running in the street.
I turned around and noticed that Cameron was gone. I figured he made his way over to another side of the car and I would find him yanking on the door handle of the car. No biggie.
Nope. I looked back to the playground. Did he decide he wasn't ready to leave yet either? NOPE. Did he go to the other set of swings? N O P E. Oh no, Casey is in the car, and it is getting hot..... But, where is Cameron? I had been calling his name, but at this point, it was full on wails in the loudest scream I could possibly muster. I was panicking. I called his name a good 20 times before the terror hit.

CAMERON??????? C A M E R O N!!!!!!!!!!!!!
Where was he? Oh, did he go into the Gym again? My mind was racing. I was panicking, breathing heavy, heart pounding out of my chest.He did that the last time we had gone to the playground there because a summer camp program was using the school, I think the Y.....
I flung the unlocked door open and no one was in there. Oddly, no one was around AT ALL. I screamed into the gym and noticed it led into a hallway.... But, my other child, he is in the car... Do I Go back and get him out and race through the building? I pulled out my phone. At this point, I was just about to call 911.

I thought.... The hallways, maybe he got through the gym and was in the hallway. I made the decision to drive around the building, to park near the front of the school, get out and drag my other son, who was also screaming Cameron's name into the building to get more people to look as I planned on calling the police. I had my phone in hand, drove around to the other side of the building but was intently looking to see if I could find him. Last thing I wanted to happen was to have me hit him while calling the cops.
As I approach the last corner of three, I noticed it. A SUV, parked at an odd angle in the middle of the street. Then a familiar head of light brown hair. I honked my horn. Cameron! I pulled over and still gripping my phone, I Flung my door open and ran straight to him. Along side of him was a gray haired lady and an older girl, I assumed was her grand daughter. The tears came down my face. I dropped to my knees, in a dress in the middle of the street. I grabbed him close, wrapped him tightly and cried. It was an ugly cry with snot, drool, tears and a lot of weird faces.
The woman put her hand on my shoulder and told me "it's ok, you are a good mom. He is fine." We briefly talked. She told me she saw him in the street and rolled down the window to tell him to get out of the road, but when he didn't respond, she knew he had a communication issue. She got out of her SUV, her granddaughter opened up her door and was getting out to see if she could help about the time I rounded the corner. I tried to explain and apologize. I thanked her, and I think I freaked her granddaughter out with how emotional I was, but the lady knew. She was somewhat familiar, or at least appeared to be. She offered kind words, but SHE rescued my son. Who knows what would have happened had she not intervened.
What was swirling through my mind as I hopped in the car was every single story I had heard about children with Autism who had gone missing. I heard 1 story out of over 20 where the child was found alive. I instinctively knew that the sooner I could get the word out, the more people we could mobilize and the more eyes we could have searching. Although I was panicking, the only way I could function was to go into "work" mode and just do what I needed to do next.
After it was all over, I ran through the scenario in my mind to see if it was my own ignorance. Here is what I realized. I have known my son to get outside and run. When it comes to the car, he runs to it and obsesses over pulling door handles. I NEVER thought he would just take off. He got far Fast too. You would figure at age 5, he would be old enough to stand there while I loaded his brother into a car seat. But, maybe not. So, what did I learn from this? Stick both kids in the car, strap the most cooperative child into their seat, then deal with whichever one is being more difficult and hope they don't find a way to put the car in gear, lock me out, or some other danger I haven't thought of yet...

Change is the one thing you can count on

2014-08-14T12:03:00.001-05:00

There is some exciting news on the church-front. My family has been attending one of the biggest churches in my city. We started going when services were held in a skating rink. Childcare was at a daycare center next to the skating rink. I think the church started in 2007, we started going in 2009. So, in that time, the church has moved out of the rink, built its own church with a HUGE auditorium, it's own childcare rooms, and more than one location in more than just my city. It now broadcasts to other cities, has many service times and days, broadcasts recorded sermons on local tv, offers sermons for view online both live during service times and in their recorded sermons section. Trust me, the excuse "I can't attend church because I have ---- at that time" can't work with this church. You can watch the sermons in your underwear at 3 am.The church is doing something right because they are enabling people to spread the word. The motto in which this church goes by is " NO Perfect People Allowed" , and they mean it. They reach out to the unchurched. They reach out to those that have never gone, or those that have been burned by church in the past.
While all this growth was going on within the church, my family was growing and learning all about autism. I wouldn't necessarily say church was any huge part of my life as I grew up, but I knew that God was there. He was there when I faced some very adult style issues as a very young child. He was there when I nearly died on the side of the road as a teen. He was there when I faced my demons and pulled me away from my own self destruction in my very early 20's. He was my constant, and who I could rely on all of the time. He protected me from myself. Much like a parent protects their toddler, just on a MUCH bigger scale.
When Cameron came into the picture, I prayed to God to protect him, just as he had done with me. When Cameron was diagnosed, I struggled so very hard and had a "God, WHY?" Attitude. It was shortly after diagnosis I realized how God planned on using me. Church can be hard for the unchurched. Let's say they get past their own mental barriers, only to be faced with barriers of a more physical nature. It is my duty to spread the word of Jesus to those of my "tribe". I experienced some of these physical barriers when I attended and well meaning nursery workers couldn't care for my son and had no resources to do so. I felt a bit saddened and if I wasn't so sure about that I had been called to do, I honestly think I would have stopped going to church and growing with God. For a while now, I have volunteered in the nursery and brought our children only when we felt like Cameron could handle it. That hasn't been too often as of late, and my husband will usually watch services on TV. No, church isn't mandatory to grow with Him, but it is a big part of connecting with those with similar visions. It is a way to get involved in others lives in helping them serve, spread the message, and provide that human connection.
My mission was to make church and learning about His word accessible to everyone, because, again "NO Perfect People Allowed".
Let me say this, I voiced my concerns, met with nursery staff, answered a few questions, gave them a few names of others who had paved the way before me, and although my heart and head wanted to make this happen and I wanted to take charge of the whole thing, that IS NOT what happened. The Childcare director and other church staff put all of the rest together and ran with it. signs are going up soon, and although it isn't open yet, itWILL be very soon! I prayed constantly about this issue, but with everything else on my plate that I deal with just to survive my family's daily life, I knew I had given all I could give. Thank you, from the bottom of my heart to all those that made this happen. GREAT things will come of this. For three years, I have prayed for this.

Getting my groove back

2014-08-14T11:00:00.001-05:00

Hello, Y'all!
It has been a while. I almost forgot about blogging altogether in the madness that has transpired. Raising two little boys is..... What is the word..... Oh, yeah, insane. The boys are so grown up. The last time I wrote, we were fresh out of diapers, potty training was still going underway, and although it still is in a lot of ways, it is more tweaks than constant "training". I am about to get on here and write about a zillion blogs, just pace yourself!
Spring had its own special joys. Lots of singing. Lots of new words for both boys.
Summer is still here, although school starts back really soon. I thought there was no way I was going to survive. More on that in another post. Hold on, it's gonna be a bumpy but enjoyable ride!

Loving unconditionally despite everything

2014-01-27T08:20:00.000-06:00

In early December, I made a video about my son and his iPad. I wanted to convey my many thank yous to the family who selflessly gave my son a vital tool that my family simply couldn't fund by itself. I have always gravitated towards music, and I wanted to find the perfect song. What I found were about 1/2 a dozen songs that really would have worked well. There was one song, in particular that I really wanted to use, but just didn't think the general viewing audience would have really understood why the song would have been fitting.
The song was Unconditionally by Katy Perry.
Here are the lyrics. I will do my best to explain why I thought this song would have worked beautifully and also how it could have been misunderstood. I did choose another song, and it was very fitting and I was very pleased with the results of that video.

So, song lyrics, here we go.

Oh no, did I get too close?
Oh, did I almost see what's really on the inside?
All your insecurities
All the dirty laundry
Never made me blink one time
I have often wondered what my essentially nonverbal son has thought. As weird as it sounds, I don't know really what he likes in terms of some small things and how much he has to cope with to get through the day. I have struggled daily with trying to "reach" my son. Regardless, he is my son. Sometimes, I feel as if I have tapped into him and have seen how ugly and beautiful autism has shaped him.

Unconditional, unconditionally
I will love you unconditionally
The hopes and dreams a typical mom or dad has for a child is actually somewhat conditional in the beginning. That is normal for parents to do. Some dream of their son being a football star, smart, wealthy, and well mannered for example. We expect our children to grow and live independently, forming families of their own. The conditions are that they don't have any mental or physical issues, that they will share similar interests, and will have the same desires and goals that we, as parents have for them. What evolves as parents and children mature is an unconditional love and desire to help their own child from their own paths to success. With typical kids, the transition between parents goals to eventually recognizing a child's strengths is generally slower. In my case, his diagnosis at such an early age was similar to being dropped in a nice cold bath. At that point, all expectations and dreams went by the wayside. The only thing I had to hold onto was that I would love him unconditionally.
There is no fear now
Let go and just be free
I will love you unconditionally
Before diagnosis, I had a multitude of fears. Why wasn't he talking? What was he doing when he was flapping his arms wildly? Would he be able to reach my "conditional" goals I had dreamed about if he was already behind his peers developmentally? Even shortly after diagnosis, I felt immense fear. I read so much stuff online and in books about autism. I saw somewhere that 70 percent on the spectrum weren't able to live on their own without some sort of assistance. I don't know how true that statistic is, but they considered successful independent living included having a full time job for more than 3 months while living independent of family or caregivers and maintaining things like bills, rent, insurance, ect. Looking back, I can tell you that there are plenty of "normal" people who cannot maintain all of the following!
Back then, it was probably the source of my biggest fears. would he have a family, live on his own, have a job or be able to do things like dress himself? if he couldn't, what would happen when I die? Once I let go of these fears, I made a promise to love my son unconditionally. Regardless.
Come just as you are to me
Don't need apologies
Know that you are worthy
I'll take your bad days with your good
Walk through the storm I would
I do it all because I love you, I love you
I was very much determined to let my son know that he is valuable, not only to me, but to society as a whole. I also wanted him to know that no matter what was thrown at him, or how tough the world may be that he had a safe haven in me. I would fight for him no matter the battles we may face. I would push him to be the best he could possibly be, but that I had faith in him, myself and most importantly God.

Unconditional, unconditionally
I will love you unconditionally
There is no fear now
Let go and just be free
I will love you unconditionally

Unconditional, unconditionally
I will love you unconditionally
There is no fear now
Let go and just be free
I will love you unconditionally

So open up your heart and just let it begin
Open up your heart and just let it begin
Open up your heart and just let it begin
Open up your heart

I will love you (unconditionally)
I will love you
I will love you unconditionally

Open up your heart
He will never have to fear who he is, but if he can continue to reach out to me and show all of his heart, we can do some awesome things!

Acceptance is the key to be
To be truly free
Will you do the same for me?
I have accepted him for everything he is, the good, bad, and ugly, but I. Am human too. I may not always show the patience needed, or be as strong as I need to be. I am asking for him to show grace as we battle in the trenches together.

Unconditional, unconditionally
I will love you unconditionally
And there is no fear now
Let go and just be free
'Cause I will love you unconditionally (oh yeah)
I will love you (unconditionally)
I will love you
I will love you unconditionally

As an endnote, it is very human to have conditions on our love, and although we may think we love unconditionally, it isn't until you are faced with some challenges that you realize how conditional our love has been. It is the ability to throw those conditions away that opens our minds and hearts to truly loving with everything we have got.

Time out for yourself

2014-01-08T23:09:00.002-06:00

January is always full of all sorts of resolutions. I have a huge one of my own. This time, this blog entry is about me. It isn't about my kids, or husband, or school systems, insurance companies, or anything else.

I have put myself on the back burner for too long. It is time I take care of myself.

Like most moms, once motherhood hits, there are several things that are sacrificed. At first, these things are daily showers, sleeping in, and spur of the moment outings. For some mothers, new clothing purchases for themselves do not happen unless the clothing item is child focused.... (Think nursing bra). Other things like hair or nail salon visits stop. Moms are stretched and sagging, wrinkled and worn. Moms bounce back at different rates. Some are mostly back to themselves in 6 or so weeks, most are not. This mom is STILL no where near where she was.... Nearly 5 years later.

I have given so much of myself and I have felt so lost, isolated and alone. I know I am not the only one who has felt this way at some point. My weight is less than desirable, and I can't say I was too thin before kids, but I have noticed that my only source of enjoyment is that moment I am stuffing my face with some sort of REALLY bad food. Then I feel guilty and undeserving, and reach again for something else to "make me happy". Wash, rinse, repeat. I know what I need to do and what works, but it requires a lifestyle change. I am very resistant to change. Somehow I must, because if I don't start now, I may not be around when I finally decide I am ready.

I haven't had a professional color or highlight since 2008. I just recently began buying 28 day wash out boxed color after seeing more gray hairs than I can count. I haven't had a nail salon visit since I gave birth in 2011 and that last visit was my "push present" to myself. Don't even get me started on clothing. I am glad and sad that I kept some clothing that was given to me in 2007.... Yes, that long ago... A friend was moving, had gastric bypass and didn't want to take her fat clothes with her. In 2007, they were at least 2 sizes too big, but I kept them because I feared how big I might get while pregnant and figured it couldn't hurt to use them during pregnancy. Guess what? They fit me now and I am not pregnant. That basically tells you how old and out of date the majority of my wardrobe is.

Even with all of that, the number one most missed thing of my pre mommy days is my passion. My joy. My quiet time. Don't get me wrong, I love my children. I love them so much that I haven't been without a child around unless they absolutely couldn't be around... Like at a funeral recently. I need to find something that is an adult activity that I can do alone. I also need to find some time without kids. Maybe it is time that I pay a sitter to watch the kids while I paint that coffee table I wanted to a few years ago. Maybe I sew some cute baby clothing, make my son that nap mat I have been meaning to make. Whatever it is, it is time I did something for myself. Maybe several somethings.

2014 is MY year, MY time. I am reclaiming all that is my womanhood and self. I cannot be the best mother or wife I can be the way things are now. I need to love myself before I can love those around me effectively. Because I have a history of putting myself last, I am not going to just do these things on my own, so I am going to schedule it in. Call it a "me date". I am marking it on a calendar. it is time to find my balance. I deserve it. My husband deserves it. My children deserve it.

One of the most common questions

2013-10-11T22:44:00.000-05:00

In one of the support groups I am in, a question was brought up from a fellow autism mom. I had not really realized it, but I think this is one of the most common questions that people have asked me. Since many of my readers may not feel comfortable asking, but would be curious to know, I thought I would basically post it here. "How did you feel when your son got the diagnosis?"
So, here is the answer I gave. I hope people come away with a sense of where we are as a family with our son and his diagnosis, but if anyone has questions, just ask. It isn't going to offend me. Promise.

I had a lot of grief. He was diagnosed a few weeks after his 2nd birthday. The diagnosis left no doubt.... He was below the 1st percentile in so many categories. It was overwhelming, although I was basically groomed and prepared for the diagnosis for months prior by family and therapists. I felt mad that I didn't come to the same conclusions that even strangers noticed earlier. I felt inadequate as a mother and finally realized how selfish I was as a person.
With that realization came an overwhelming sense of peace. I wasn't greiving for my son like I had thought. I was mourning the loss of my own hopes and dreams I had for my child. I was angry at myself for being basically blinded by love. I was furious that I stopped doing what came naturally as a mom and let societal rules and guidelines determine my child's "worth".

Once I was able to understand the sources of my negativity, I was able to move on and once again see my child as the unique cuddle bug he is. He will carve out his own path in life and I have been blessed as his mother to witness it. I am proud and blessed to be his mother, because through all of this, I have learned more about life and living the past few years than I had the nearly thirty years I had lived prior. I also realized that I was a good mother who saw no "fault" with my child before diagnosis. I loved him so much and saw his strengths and celebrated them with such joy that his "deficits" didn't even matter.

I honestly knew deep down that he was "special" from the moment I set eyes on him. He held my heart. I stayed in this foggy haze of depression and guilt for a good year.
I know that our lives will be more difficult and challenging. We will have to work harder, be stronger and have more endurance to carve out this new path. Life isn't fair or easy. It is through life's challenges that success and failures lie. After all, it is better to fail at something than to not have tried at all.

T minus 21 days....

2013-08-05T21:36:00.002-05:00

School is about to be back in session! I cannot express how happy this makes me without someone wanting to punch me in the face for making the blog a little too long. Cameron had a bit of a rough start to summer, and so did I. I had serious anxiety over everything. FYI, WebMD and Google are NOT your friends all of the time. Sometimes they make you stay up at night feeling like live bait in a shark cage off the coast of South Africa during the filming of shark week. Or, at least, that is the best way I could describe the beginning of summer..... I saw a doc, got on some meds and feel less agitated.
I wasn't picking up on a lot of Cameron's subtle clues, and that was causing some serious meltdowns, and the fecal smearing. With a few tweaks to the schedule, and a more watchful eye for certain clues, life has been manageable. It helped to have some structure in his routine, and to not stay at home too much. He is too active to stay cooped up inside all day. He craves different environments. I can't really blame him. I am the same way. From the last week of June up until last week, we did a Kids day out program that seemed to help greatly. Both boys loved going, and I enjoyed working with some great kids, and great ladies. It was good for me to get out of the house too.
The biggest change I have seen this summer was when he began requesting for things in sentences. This happened for the first time with a teacher at Kids day out, and again, a few times at home since. He also shocked me a few weeks back. He has sung the abc song for a while now, but mumbles through a lot of the letters, so I assumed he was just singing a song and not correlating the letters in the song to the actual letters of the alphabet. He has a toy train with alphabet letters on blocks that you can stick in the train and it tells you the letter and sound. One night, we were sitting in the living room and he began approaching me with letters from his train in his bedroom. He would show me the letter, then TELL me the letter. He did fantastic! He would run back this room and grab a random letter and repeat. The toughest letter for him to say is X. We are working on it, and it is getting better. At first it sounded like "it", but now he is sounding it out, so it sounds like "eeeeehhhhhhkkkkkk SSS" with an almost silent s sound at the end. He will get it though!
This gives me so much hope. He can now master these letters, and i look forward to him spelling his full name, and typing or writing simple words. It may be a while off, but you have to understand something..... We had hope, but we also read and saw dozens and dozens of stories of children on the autism spectrum who reminded us so much of our son who couldn't accomplish this much, either EVER, or not until adolescence.
So, with a summer like this, I can only imagine the possibilities this school year.

The morning routine

2013-08-05T20:44:00.001-05:00

I Wake up to screams. He wants his special milk. While he sips, dress him for special education preschool. He still wears a diaper, and I struggle to change him as he lays there like a limp rag doll drinking from a sippy cup designed for a baby. I pay special attention to his clothing, avoiding things like shirt tags and sock hems. I get a special greeting, as he flaps his arms and nods his head, then sinks into my chest for cuddle time. Next comes hair and teeth, as I pay special attention to his aversions to these tasks. Spend some time feeding and dressing little brother, but not as much, since he is more independent. Trade spots with my husband so that I can dress. The day is planned with special care and consideration. Off to school and therapies, then back home to do chores and spend some special time with little brother. Time for school pick up at his special designated time and location. Snack time with special foods approved with his special quirks in mind. Encourage playtime with brothers so they can develop a special bond. Work on special tasks to help develop everyday life skills. A special dinner, spoon fed to to him, a calming bath after a 2 hour meltdown, and finally, bed. It is midnight, and I can only think of how special the day ended up being. He is almost 4 years old, and he said his first word today. As routine as this day was, it was also special. I cannot help but feel weary, drained, elated and hopeful. Tomorrow will be special too.

I wrote this several months back, and I thought I would share it with you. I can remember thinking as a young teenage girl... " I will NEVER lead a boring and mundane existence!" And you know what? I my life isn't anywhere near boring or mundane. :)

Don't mind me, I am just going Crazy.

2013-06-26T20:18:00.000-05:00

I am losing my mind, literally.

I wish that I had hired a lawyer or done more homework. I am so stressed out this summer having my son home and having him regress. Yes, he is not even 4 yet, but when we had his ARD meeting, I have mentioned ESY services a few times, and they keep denying it saying he has no regression that lasts longer than 8 weeks. I know now I should have requested to add it to his agenda at the ARD meeting in writing. The things you learn along the way.... He has regressed noticeably at home over holiday breaks, and I just knew this would be an issue. So, what is he doing? Increased meltdowns. Fecal smearing (new since summer), self injury, loss of language ( he is technically still considered nonverbal), All of the progress we have made with potty training is GONE. We were sooo close to having him in underwear during the day with no accidents. School hasn't even been out a month. I feel like a huge failure of a parent because I cannot seem to keep a routine enough schedule or get him to behave like he can at school. I am Working at a kids day out program and I am one of my Sons teachers.He has two other teachers that are fantastic and patient and 6 neurotypical classmates who are pretty awesome kids. At home, He runs around he house stimming on water faucets, the toilet, shower heads, doors, drawers, cabinets, the oven, microwave..... I cannot keep up and keep redirecting him. My house is HORRIBLE. I had to let that go. It now looks like an episode of hoarders. Think I am joking? Wanna come visit and see for yourself? At least the diapers make it in the trash and we don't have bug problems.... Yet.... At kids day out, the other kids ask why he doesn't share, or just grabs at things. They ask why he is still in a diaper, and why he doesn't talk.I am actually ok with the questions because that means the kids want to learn and help. He spent the first day running in and out of the room, down the hallway, and around the building..... Or screaming... A lot. Or stimming on the doors, toilet, sinks, water fountains, the automatic paper towel dispenser... Does anyone know if I can request an emergency IEP meeting? He needs ESY and I don't know if they can do it, but it is either they do that, or I am literally considering going to an inpatient mental facility for myself. Maybe both.
Good for me that I have a call in with a mental health professional. I see them in less Han a week... I can make it, right? They had better break out the strong drugs... Does electro shock therapy work? What is the worst that could happen... Death? Ok, cool. I am down.

This is what happens when your spouse spends 90 percent of his awake time on the job, away from
the home. He does this because we need money to pay for things, like food and a roof over our heads. It isn't to save for some vacation or a new boat or something. This is simply to survive.
This is what happens when your family support system only exists in theory. They either don't live close enough to help, or those that do, don't care to be around your kids. OUCH. Sorry kids, grandma and grandpa would rather take a nap or booze it up than to spend time with you. They are the worst about saying "we support you" then turning their backs. It hurts unimaginably to think that you are such a problem that even your flesh and blood have "better things to do" ALL OF THE TIME. Those friends you once had.... You know, when you actually nurtured relationships with adults.... Well, they have either forgotten about us, are wrapped up in their own lives, or simply don't know how and if they could help. You and your family are distant memories...maybe they feel just as deserted and are hurt that I haven't called. If they only knew how much I want to reconnect with adults again. I barely have the energy to get out of bed, brush my teeth and change clothing.

Yes, I go days without showering. I always do before i have to be somewhere important, but f you catch me at the store and i have a swarm of flies following..... yea... my kids are bathed almost every night though... routine, remember? In fact, as I write this, I am still wearing the clothes I put on yesterday afternoon with all of the lovely crusty toddler crumbs that comes from feeding stuck to it.
I have had people watch the kids in the past, and I either make a mad dash to shove everything into every hidden crevice I can find so they do not ever really see the condition of my house, or I bring them to their house and wonder what I will have to do without in order to pay for them to watch my kids while I go clean, or lie and say I am cleaning but take a nap. A 50 dollar nap.....

This is what happens when the church you attend is no longer meeting the needs of your special needs child. When you are patient, and do all of this research, and educate yourself on some solutions that might work and you get shot down time and time again. I know God is calling me to do something for other families like mine. this is bigger than just MY family. it feels as if the whole of society has chosen to shun me and our family. The school district, people I called friends, family, strangers in public, church. I feel like David amongst a society of Goliaths. I cannot tackle it all, and I am letting God take over.
There are a few.... A very select few who have stuck around. They are the ones who you would least expect to help. other parents of special needs kids.... Although our contact may be that ONE time, it is what we have in common that makes me feel that I am normal considering my situation. There is a friend, who spends her work day dedicated to the youngest of children with developmental delays. She has occasionally spent her own time watching my kids. She tells me that we don't have to pay her, but if ANYONE deserves the money, it is her. Her family has their own struggles, including some hefty medical bills. They are struggling financially so the extra cash from babysitting comes in handy. The WHOLE family is awesome with the kids. It may be months between visits to her house, but she is pretty much it. What I wouldn't give for a girls night out and some girls to go hang out with. I wonder what it would be like to come home to a house that is somewhat livable. I dream of the day when I don't have to scrape poop out of carpet and off of walls... Or change diapers for that matter. It would feel like I hit the lottery if, and when I hear my older son say " thanks, mom". I know, this too shall pass, but for right now.... Don't mind me. I am just going crazy.

Autism Dads

2013-06-15T09:18:00.000-05:00

Father's Day is tomorrow. I wanted to point out a few things that separate Autism dads from the pack, and in my eyes, makes these men the Worlds Greatest. How did I get so lucky to marry such a great guy?
Here's just some of the things that my husband does:

You get down in the floor and play with your kid the only way you know how to.
It is okay if he doesn't look you in the eye.
Instead of t-ball on the weekends, it's walking side by side during hippotherapy.
So what if he is scooting around in your 200 dollar new dress shoes? He's imitating!
You jump for joy when he talks to you or greets you at the door.
"UP" means a workout where your child is the deadweight, and you do this till you can't anymore.
You buy and set up the biggest trampoline that can fit in the yard so you can jump with him too.
You don't hide his diagnosis
You walk with him and FOR him.
Bathroom time is now community time, and you don't care if he stares you down while you go.
Sometimes he feeds you food, although sometimes I wonder where he found that cracker at...
You reach out to help other families like ours by spreading knowledge we have learned along the way
The stares in public don't seem to embarrass you any longer.
It amazes you every time our son uses a spoon to eat, and he is 4.
You work long, late hours to allow me to stay at home to work on therapy.
Weekend Activities are planned around our sons and their interests/ability
You have spent hundreds of hours reading online and in books about autism.
You are man enough to admit your biggest fears
You are a rock when I need you the most
You are involved in every aspect of your sons life.
He is not an embarrassment, mistake, or punishment. He is a gift, and you treat him so.

It's been a while

2013-06-09T22:20:00.004-05:00

Blogging has helped me immensely. I haven't been on to write a new blog in nearly 6 months, but I need to be better at committing time to this. Blogging helps me vent, and let go of things. It is great for my own mental health as well.

On that note, I have been in a huge funk lately. Everything has been building up, and I have talked with the hubby that maybe it is time to seek a professional's guidance. I have been chronically and seriously depressed. I am at the point now where even if I won a mega millions jackpot, I might smile for a few, but then complain about all of the problems the money could bring. Rather than gripe about my problems in here, I am going to spend the rest of this blog speaking of the amazing accomplishments and things that have happened lately.... And save the misery for the doctor.
So in 6 months time, Cameron has explored and eaten a few more foods, he has said a TON more... Some of what he repeats is a little embarrassing, but what toddler/preschooler hasn't said something a bit embarrassing?

Casey has had a verbal explosion, and his favorite words lately are "NO", " PLEASE", and "THANK YOU". Guess who is copying? Yup. A big win in my book. echolalia or not, he is understanding that he can speak and express his feelings. He will say " Casey stop it" anytime he is mad or doesnt want something. I guess he has heard me say that phrase a lot... afterall, Casey is a typical 2 year old getting into EVERYTHING in sight. I just thought i had my house babyproofed u til he came along!

Another great moment.... Potty training. Both boys are soooo close. Cameron worked all year on potty training at school. The last few weeks of school, he was going with almost no accidents during the school day. He would come home, and I wasn't rigid enough with the potty schedule, so he didn't do so well here BUT now, if I tell him "go potty", he goes to his bathroom, lifts the seat, takes his pants off, and scoots onto the seat and pees about 80 percent of the time. Casey sees Cameron getting serious praise for the potty skills, and has said " pee pee potty", so I stick the toilet ring on, and take off his pants and diaper, plop him on, and about 50 percent of the time, he actually pees. I am hoping to have one, if not both boys daytime trained by the start of school.
This summer, I will be Cameron's teacher for a parents day out program. I feel like he will get more out of inclusion in a regular program with guidance from someone who really knows how to handle him. Since most of the teachers that run the summer program are younger and college aged, the director and I felt it would be best for me to be in his room, rather than teach somewhere else and run the risk of Cameron melting down and flipping out on his teachers. At least of it is me, I know how to handle it.
Cameron had an outstanding teacher, aides and therapists in this past year. He grew so much, that they named him most improved student in his classroom. He also grew so much in this past year. I let his hair grow out, and boy o boy, the curls!!
I also attended the autism conference for the region. I saw a few other parents out there, but it was mainly administrators, general Ed teachers, special education teachers, and therapists. I heard Temple Grandin's mother speak, ( here is a wiki link incase you have no clue who she http://en.wikipedia.org/wiki/Temple_Grandin ) I learned a few techniques that I could try with Cameron in a few other seminars.
I thought I would leave you with a picture. Look how much he has physically changed. Next blog, might include some video so you can see for yourself how far he has come developmentally. It has been a moving and powerful year.

Holidays are over... Sorta

2013-01-03T05:23:00.000-06:00

For most people, the holidays came to an end yesterday. The new year is here, and life is getting back into the swing of things. For our household, "normal" will not return for a few more days.

Cameron is still out of school, and his routine is so out of whack. It is taking a physical toll on everyone. He has increasingly acted out and has become physical with all of us recently. When Cameron is expressing that he is angry, or wants us to stop whatever we are doing, he slaps..... and it escalates into self injury. At first, I figured it was because he was sick.I hope it isnt something deeper at work here. My husband and both boys were sick right before Christmas. I was the lucky one to not catch anything. Instead, I played nurse to the men of the house. You would have thought the oldest (my husband)was going to die on the spot every time he coughed too. The best thing was that I did have quite a bit of help this year with the kids. My husband stayed home through Christmas and worked light days up through the new year. It was the best non monetary thing he could have given me.
Today, when he finally headed back to do a full day of work, it was a little rough on the kidlets. Casey, my younger one, is now going through separation anxiety. Badly. If I go anywhere outside his field of vision, you can bet there will be a screaming toddler chasing me down. The same goes for daddy. It broke both boys hearts today when he snuck out the door to go to work. Along with separation anxiety, if I even so much as go to the bathroom, I come back to a disaster... Every time. For their safety, I am seriously thinking that I should cart both of them to the toilet with me.
Casey figured out a way to climb on the dining room table, and even with both parents at home this week, he managed to do it at least 5 times. The first time it happened, both Kevin and I were home, and I was able to snap a picture. Kevin is close by if it looked like he was going to go anywhere. It comes as no surprise then that today, while I was getting big brother Cameron dressed, Casey fell off of the table top. I think his saving grace was that he hit a padded chair first before tumbling onto the tile floor below. I have been beating myself up wondering what i could have done to avoid this, and for now, the only thing I can come up with is to place boxes inside the seat of every chair so he cannot use them as steps to climb up the table. Why was he up there? Food. He saw a box of cordial cherries. He had already eaten cereal, apples, puffs, a pop tart, a full 9oz skippy of milk, and 1/2 a banana within the last hour. I guess we won't be leaving any food out anytime soon either.
Cameron will say "aysee stop dat" translation: Casey stop that. He says this, then he hits. I guess he hears me telling Casey no quite a bit, and rather than recognize Casey as a name, he sees it as the phrase to say stop or no. The slapping could be a mimicking activity too... Which is scary. I have hit the coffee table to get the attention of the offending child ONCE, and only because it was a quick way to prevent an injury from across a room. I guess it only takes one time.... Or I dread saying there is a deeper issue here. I would rather blame my modeling skills than to say his physicality is stemming from anything else.
The transition out of his normal routine has also caused a more worrisome physical issue. He is once again withholding poop. Yea, I am gonna talk about poop for a moment. This kid withholds poop...like not just hard poop either. He will cross his legs and fight the urge to poop with all of is might. We. He can no longer hold it, we will see a little stain in his pull up. We wipe his butt, get him in clean pants and within 5 minutes, stained again. We have let him sit in it. Changed every 5 minutes, it doesn't make a difference to him. By the end of the day, even if I am right in top of it, he ends up with a chapped and bloody butt. There is a term they knock around for this: encopresis. I am learning that this is common with kids on the spectrum too... Sigh. I am beginning to feel like EVERYTHING is common with autism.... Anyone else? So, a call into the doc suggests regular enema treatments and miralax. This isn't our first go with his constipation. We tried dietary changes first.
For what it is worth, I cannot wait until we get back on routine.... With school, with pooping, with everything.

Good people still exist

2012-12-08T22:43:00.001-06:00

In this world, we see things that can harden so many people's hearts. We also see so much that shows us that those who give without regret do exist. For instance the hot topic of the week was about a New York policeman going into a shoe store and purchasing a pair of boots for a homeless barefooted man. The officer proceeded to place these boots on this man's feet.
We later find that the homeless man was once again shoeless. A lot of people made some assumptions about this homeless man... Like how ungrateful he was. We don't know if maybe having a pair of brand new 100 dollar shoes put that man's life in danger. Let us not jump to conclusions until we have walked in this mans shoes (or lack of shoes). When the police man was told of the barefoot homeless man and that he was once again barefoot, the officer said it didn't matter to him. He helped a man keep his feet warm for at least a few minutes, and that it was the least he could do. That, my friends is humanity at its finest.
With that said, we had a wish fulfilled that is beyond measure. For those with non verbal kids on the spectrum, you will understand this completely. Kevin and I have been trying forever to get Cameron an iPad. Not for him to goof around with, but to use it as a communication device. There are some really good educational programs that developers have come up with to help those on the spectrum. We were advised early on that Cameron would be an ideal candidate for such a device. So, about Jan. of last year, we began trying to find a way to get him one. We had little money for savings, and we went through the roughest patch of our lives just paying bills. I wouldn't say we are out of the woods yet either. We got really inventive, sold furniture, consigned outgrown baby clothing and items, I picked up some extra income through babysitting, and working at a church moms day out program. As soon as the money would come in, we would get slapped in the face by life. It always got moved to the back burner, as our mortgage or medical bills came before we could honestly commit our funds to something else.
By his birthday in July, we were focused on making sure that he had decent clothing to start school in, a backpack, a nap mat, pull ups, ect. Even getting those things seemed tough to do, but somehow, we made it. God provides what you need and that is the only way I can explain how we were able to pull it off. We have never lost faith in God, even through all of our struggles recently. It also helped that I had credit at the consignment store for selling baby clothing. So, it wasn't new stuff, but I got a heck of a deal on some slightly used merchandise. Some stuff was even cheaper and in better condition than what was for sale at goodwill.
By the time thanksgiving came, I knew that the only way I was going to get Cameron an IPad any time soon was if I either hit the lotto or was a winner of one of the contests or grants that are out there. I got online and sent in application after application, filled out more contest forms than I ever even knew existed, and entered contests on Facebook. I prayed that we could come up with something, ANYTHING by Christmas, but I wasn't holding my breath over it. I figured that if I just worked harder, smarter, or something, that maybe that is what I needed to do and that God would see it through if that is what was supposed to happen.
Late on a Friday night, I got a simple message from a distant relative. She asked me how an IPad would benefit Cameron. I made the assumption that she saw my posts for trying to win contests over and over on Facebook. I sent her some info on what Cameron had already done on an IPad, and why I thought it was important for him. I also linked A video from 60 minutes on the benefits of an iPad. I thought, maybe she will do one of those "vote" things and maybe that can help him get one. the next message I get from her is that she would like to buy my son an IPad. I literally fell off the edge of my bed. It should have been video taped. I ran though a list of things, thinking... She can't be serious, can she? I wonder if she knows how much even a used iPad 1 or a mini would cost. I can't..... I didnt expect this to happen at all.... am I facebooking so much about this contest that it is driving her insane?
But, then I realized, yes, I can, for my son. I can and I will accept this help. God is providing something for Cameron that he needs..... He is getting a voice. I became so overwhelmed with emotion, My husband had to make sure that I didn't hurt myself when I fell off of the bed or something. I told him of the conversation, and he too thought a while, then began weeping in joy. It was so surreal. This lady and her husband called me the following morning and informed me that the would be going to best buy to purchase the iPad for him, and if there were any specs they needed to know about. I told them ANY iPad could do the job, and thanked her over and over. they showed up to our house, with not only an iPad but a super nice and expensive case, and a top of the line ipad. Also, 50 bucks in apple cards for applications. All from a distant relative who, honestly, we HAVE passed each other in public and not known each other until later on.
I am going to pass tis blessing on too. t is the right thing to do... So maybe I am not ale to buy another child an IPad that needs one, but I can provide respite care to a mom and dad who really needs it. I am capable of that. I can make dinner for a neighbor recovering from surgery. I can teach my children in the church nursery about God. I will be inspired once again to give, and to be inventive about how I am able to give. In a way, my son's good Samaritans gave me a gift too. They warmed my heart and helped me to see that there are far more ways that I can serve others. if you can touch a life today, please don't let that opportunity pass you by.

Children Come First

2012-11-15T23:54:00.002-06:00

The holidays are just around the corner, and my least favorite season is coming upon us.... winter. I am more of a summer gal myself. Lately, I have been in a bit of a funk, and I don't really know what to do to get out of it. I am trying desperately to find some daily happiness or a bright spot.I am surrounded and reminded of theses positive things constantly, but maybe some vitamin D is in order! It has just been a lot harder to do, although, I will say that I really do have a lot to be thankful for. With that said, I think maybe I will write a few things out, just off the top of my head.

The biggest series of positive things is the results from our hospital visit to Cook Children's hospital. Last time I posted, I talked about his amino acid levels being high, and not really knowing what it meant. I worried for nothing... but I guess that is what caring and loving parents do, right? We drove 600 miles round trip and spent some good quality time with my grandparents. Instead of making a rush trip down there and a rush trip back, we made a long weekend of it, and I think the last time we took a family trip as to go down to see my Mother In Law at Christmas last year. It took us 2 days to drive the trip and 2 days back and although we had some time off in between traveling, it made me wish to never travel in a car with 2 small children for over 5 hours again. This time, we were able to drive down right under 5 hours, spend some decent time recouping, go to visit the doctor, and come back. We worried how we were going to be able to pay for the gas, especially since we have had zero income coming in in the past 2 weeks prior to the trip and mortgage and other bills due. It isn't because my husband wasn't trying his hardest though. Sometimes that is how jobs that pay commission and have charge backs work. I got paychecks from some childcare stuff I had picked up, my parents and both of my husbands parents helped us financially too. That is something to be grateful for. I tend to not ask for money, and would rather have parted with valuables... (if I had any more valuables to part with, haha!)
We went to Cook Children's Hospital in Fort Worth. Let me just tell you, this was the first time I had REALLY seen a major specialty children's hospital, and I was floored. I was amazed at how genuine the staff was, and the waiting area, ect. It made our local resources look like a backwoods shed. They had buzzers that lit up and vibrated when it was your turn to go back, and in the meantime, they had a huge open area where you could let your child play. They had swing seats, wall mounted touch screen video games, a build a bear workshop, movie areas, and several staff members who were more than willing to assist you by either getting things like drinks or snacks for you, or helping you find a bathroom. But, before we went to the actual hospital, we went to the specialist's office. It was clearly geared towards those kids with chromosomal abnormalities, autism, and developmental disorders. We met with the nurse, and she was super nice. We then met with the doctor, and she spent a good hour going over concerns, collecting detailed family history and other data. She didn't seem rushed at all, and we were clearly more than "just another patient". We were the family of Cameron, and we were treated as so.We asked about the amino acid levels, and that is when we found out that his fasting bloodwork came back normal. She told us that the first numbers were consistent with blood results of a child who had just eaten or drank something. So, in other words, completely normal. She then suggested that we have a full metabolic panel done anyway, since she wanted to make sure she didn't dismiss something, and she also wanted to do a full microarray chromosomal test since it looked like they had only really looked at one chromosome (our of 46) in detail. I was worried about the expense, and she had her insurance specialist on the phone with our healthcare provider, and she kindly put it on speaker phone so we could get a direct answer right then and there. We agreed to the testing, although, she did tell us that chances are unlikely that there would be any abnormality found. sdhe sent us to the hospital for our lab work. This is where a lot of parents have to make the choice... it is a longshot that she will find anything, BUT if that longshot is there, then we know which direction to go. It might even make things easier when we have to battle insurance companies and school for therapies.
This week, the nurse called me to let me know that his genetic profile testing and metabolic panel came out normal. There is a small sense of relief in that news, but also we know that there seems to be no direct medical causation for his symptoms. You could be negative, and focus on a few things, like the fact that we had no money for this trip in the first place, 2 days of missed work, nothing new was found, and there is still no solid medical cause for his Autism. Instead, I choose to look at the positives. We took a much needed vacation of sorts, spent some time with my grandparents, took the boys on their first commuter train ride throughout the Dallas area, my grandpa treated us to lunch in the West End, We drove by the Fort Worth Stockyards (which isn't REALLY where they sell cattle anymore), met a wonderful doctor and staff who I hold in highest regards, actually enjoyed ourselves at at the hospital, and survived 2 car trips with small children in one week. We also can lay to rest any doubts we had that there was some sort of chromosomal issue affecting our son, and we no longer had to worry about those amino acid levels. We also learned something... there were hundreds of other parents at that hospital that day putting their own children first and pushing through the worry and doubts, and surviving on positive vibes and prayer. If they can do it, so can we!

Show me the money

2012-10-12T23:37:00.001-05:00

I am beginning to really understand how our income is becoming a factor in Cameron's future. It certainly stinks to be lower/middle class with a child on the spectrum. Every good parent wants to give their child the most they can, but when that "gift" is a chance at independence, it tugs on every heart string you have. We are about to embark on yet another attempt at potty training. This will be our 4th major attempt, and hopefully,the last. Back when my husband and I originally met with Cameron's teacher, they simply told us not to even worry about until they began training him in school. His teacher then told me that 9 out of 10 kids that they had the past year were potty trained by the time they were ready to move up to the next class. That was nice to hear, but I had at least 3 failed attempts under my belt and had read how hard it is to get children on the spectrum trained by other parents.
The usual "big boy cartoon underwear" wasn't a motivating factor. I guess that is good to know, since I spent a pretty penny getting a ton of cartoon underwear packages about a year ago... which, now are all too small anyways. Food has never been a motivating factor for Cam, and stickers and praise don't seem to mean that much to him. My first attempt was the 3 day method. You know, strip your kid down to underwear and take them to the potty every 10 minutes. After day 2, I saw no improvement, an increase in bad behavior and a new fear of the toilet. I also tried taking his frog potty and sitting him on it naked while he watched his favorite cartoon. I felt like I wasted 15 bucks to buy that plastic potty. I fed him salty foods, gave him plenty of liquids, and all he did was scream and pee all over the house. He also would run and hide to go poop in private.... usually in his bedroom on his bed. I tried the whole praise thing and switched to a potty ring on the actual toilet. We tried getting him to pee outside in the back yard after watching daddy... nope that requires him to imitate.... something he doesn't do. He seems so ready but beats to his own drum. Especially when he takes his diaper off and parades in the nude, or takes his pull up off after pooping and throws it into the kitchen sink... or worse. One time, I was asleep in the middle of the night and he took his fresh poopy pull up off, came into my room and placed it, poop side down on the edge of my pillow. That was not a nice way to wake up in the middle of the night.
In the coming weeks, his teacher andaides will ask for spare clothing, pull ups, underwear, and will begin taking his pull up off and putting him in underwear. I really want this to be the last attempt. It is not cheap to have 2 kids in some sort of diaper and I hope that we aren't like a lot of other ASD families facing untrained 8 year old kids. Can you imagine the cost of diapers/pull ups and incontinence supplies? Sad to say, I have already done some research to figure out if insurance can help with those kind of "medical supplies". Recently, we have been able to get him to poop in the potty, and he peed this morning when I didn't give him much of an option. It just isn't consistent. I feel pretty defective as a parent for not being able to get him trained at this point, but what do I know? I am having to learn and relearn solutions to even basic things with my kid. He's my first kid, and I truly fear potty training his little brother at this point too.
Speaking of fear, A few months back, we went to a Developmental Pediatrician to finally get some tests run to check for chromosomal abnormalities.We got a bill for a pretty penny just to see this doctor and have these tests done. No major chromosomal issues existed, although at one point, we were told that he had a defect found on his 15th chromosome. It made sense because he did also have a birth defect with the location of his urethra known as Hypospadias. (Please don't do an internet search unless you just want to stare at deformed genitals! I warned you!) That is what prompted us to get more detailed testing....the sad thing is, if he HAD a chromosomal abnormality, then there are insurance laws that require insurance companies to fork out more for therapies, medical supplies, ect. What we found though was that it was ruled an inconsistent finding and a flaw with the test method used... so, no chromosomal issues, BUT the developmental pedi did say that his amino acid levels were extremely high.I am thrilled to know that he doesn't have some chromosomal issue,but in a way, I feel like my battle with the insurance companies, doctors, and schools just got tougher than it should be.
What the amino acid test means is that some of the most essential acids that the body needs are not being properly absorbed by his body and are just being built up in his system. Some are potentially toxic and could kill. It could mean a liver defect, or other gastrointestinal issue. Maybe that explains his frequent constipation and some of his food issues. The big news though is that the developmental pedi. needs to refer us out to a genetic/metabolic disorder doctor. I figured this wouldn't be a big deal since I live in a city with a huge teaching hospital. Little did I know that this kind of specialist is very rare throughout the nation. Luckily for us, there is one close enough that we can drive to it in one day. We will be making an appointment on Monday to go to a children's hospital about 5 hours away. We are hoping to get in before the end of the year.... So, what am I expecting to see out of this? It isn't going to "cure" him from Autism, but there may be a medical condition to explain some of his symptoms. There may be some medical issues that can be solved or helped, thus easing his life. It is also frequently common for people on the spectrum to have co-morbid medical issues. The most common of these is gastrointestinal issues, heart and other organ defects and hearing difficulties. I really just want to make sure that he doesn't have a condition that hinders his quality of life or shortens his lifespan.
This visit is a huge financial burden, and is happening at a really bad time of year with holidays coming around the corner, but has to be done. I would hate to find out that we waited on something that could be easily solved. Sadly for us, we will have to pay for our expenses to make this trip and the entire doctors bill. Our insurance deductible hasn't been met and will not cover anything until that deductible has been met first. I just hope our extended family can understand that their 20 dollar Christmas gift that we would have bought (and they would have probably hate or re-gifted anyways) went to pay for this trip, and that my boys are still young enough to like playing with dollar store finds rather than the neatest, coolest "gotta have" gift that costs an arm and a leg.
Along with all of the bloodwork that was done by the Developmental pedi, we got a prescription for private Speech and Occupational therapies. 2 sessions per week up to 45 minutes a session. The cost AFTER insurance adjustments would be 200-300 bucks a pop until our deductible is met, then 50 bucks a session after that.... so, even after deductible, we are looking at at least 400 a month with that kind of schedule
I found a place that I wanted to go with and went to go see if we could get him in. They told me that they were waiting on my insurance carrier to approve them as an in network provider.... not that it makes a huge difference at first.... again, we would pay out of pocket until our deductible could be met, and our insurance has a limit on the number of therapy sessions he can do in a calendar year. I was also told that the only way he could get in on the schedule right now was to do therapy sessions in the morning..... yikes... that means pulling him out of school at least 2 times a week, driving him to the therapists, then taking him back to school. I am now understanding why those parents with higher incomes usually end up with higher functioning kids. Love cannot "buy" the therapies he needs, and as much as I wish love, hopes and dreams could help him out, it seems like only the wealthy can afford to tap into all of the resources available. I also understand more and more why a lot of these kids are home schooled rather than going through the public school system and risking truancy issues.All I know is that we will never have enough money or time to do everything that we think could be or should be done that could help. The only thing we can do is be selective about our choices, pray, and hope that in the end we have done enough for a child that deserves every last sacrifice and cent we can afford to give, while making sure our other child is as minimally impacted as possible and afforded the same amount of commitment. Rock, meet hard place.

2 steps forward, 1 step back

2012-10-10T23:19:00.000-05:00

Cameron got his first "report card" of sorts this past week. They updated information on his IEP as far as skills mastery, and things seem to be trucking along. For now, a lot of focus is on pre academic needs. Some of this stuff may not be mastered until he is a lot older, but again, I am just amazed at what he has been able to do. He is making more noise in class, and they say he frequently says "stop it". LOL. That is pretty fitting.
I have been telling baby brother to "stop it" or "stop" quite a bit lately. Baby brother is testing his limits. I don't think that Cameron was all that bad in that stage of toddlerhood, but it could be that I just don't remember. Cameron has begun to say his brother's name, (Casey) but it is coming out like "Stacy". I think it is cute, but if he is still calling him "Stacy" in a few years, he might just get punched in the gut.
The largest improvement that we have seen is that he is getting better at following direction. I still have moments with him where he either simply can't process what I am asking him to do, or he doesn't realize that I am talking TO him. The other day, I asked him to go get his shoes and bring them to me, and he did it. That is a first... 2 step directions, here we come!
He is learning how to unscrew a jar lid with hand over hand help, has begun using a spoon at mealtimes more often, although at this point, it is still just holding a spoon while using fingers to eat.... it is an improvement nonetheless.
He has now successfully mastered taking his shoes and socks off, although a new trend has started. He is now throwing fits when he does not have socks on. What that means is that he wants socks on all of the time.... even when we try to bathe him. I am sure this has to be sensory related, and I have tried other things to provide stimuli to his feet to no avail.... so he sleeps in his socks... not a huge thing, but just a difference.... I think I liked sleeping in my socks too, and still do it frequently as an adult, so maybe he got that little quirk from me. I just don't like the outburst he makes when I have to change his socks, or take them off for any reason.
Cameron has also mastered washing his hands and face at school. I figured this would be easy for him since he loves water, but it is still a life skill that he refused to do for the longest time. If I had not mentioned this before, he is also brushing his teeth on his own with little assistance. He chews his toothbrush to death, and we end up replacing it about once a month.... if that kid ever ends up in a place where a weapon would be needed, he can make his own shanks in just a few weeks by gnawing his toothbrush down to a fine point. :)
His door opening and closing has become extremely obsessive. He will open and close doors for HOURS if I would let him. He goes from opening the front door till I lock it to opening and slamming his bedroom door, then the oven, then a cabinet doors, closet doors, drawers in his bedroom, toys that have doors or hatches,toilet lids, the washer and dryer, refrigerator... you get the idea. I never noticed there were so many things that you opened and closed in daily life. He also does this with car doors. In fact, when I get him out of the car, he slams his door closed, opens my driver door, pulls on my blinker, then shuts my drivers side door and repeats.
I had just gotten so used to his "habit" that it affects where I park in a parking lot... I don't want him door dinging other vehicles. One of the scariest incidents of my life came this week when he was opening and closing my car door. I guess I didn't think of the dangers that exist, and would blame myself forever if something had happened. I needed to get some diaper cream since I put it in his backpack for school that morning and never got it back. They kept it there in his bin with his pull ups, but I use the cream on both boys and only had one tube... thus the need to go get another tube. I parked in the parking lot, unbuckled Cameron from his car seat, went to unbuckle Casey, and Cameron got out of the car and did his "door thing". I had Casey on my hip, and planned on holding Cameron's hand up to the door of the store until we could get a shopping cart. I called to Cameron to "go" and rather than grabbing my hand like he has done EVERY time before, he took off laughing and running... right into the path of a large suv. He was hidden behind my car as he darted out, and if the driver had been on their cell phone, or going faster, or distracted in ANY way, there is no way they would have been able to stop in time. They stopped, honked their horn, scowled at me and Cameron just thought it was a big joke. I screamed so loud at him and in shear terror, I doubt there was a single soul in that lot that didn't notice. Cameron just giggled and didn't seem to notice the emotional turmoil I was in. I could have lost my son that night... all because I got used to his routine and made a bad judgment call. I cant win them all, but when it comes to his safety, I cannot afford to lose. I cant have a brain fart EVER... which, really, can seem impossible for ANY parent. What gets really hard is figuring out what to do when these "fearless" kids are big... like bigger than you. I had better learn how to tackle like a linebacker.... I am sure at some point, it will come in handy.

Open and Close

2012-09-24T07:01:00.002-05:00

So, lately, Cameron has this thing with opening and shutting doors,cabinets,drawers, toys,whatever he can get his hands on. He has now figured out how to unlock the front door, including deadbolt and locks. Earlier this week, I was changing a diaper on the baby in the living room and Cameron decided it would be a good time to go explore the neighborhood I am guessing. He bolted and all I kept thinking about was him getting hit by a car.

We live on a busy street, much busier than a normal residential street should be. It is so busy, In fact, that I was backing out of my own driveway after looking both ways and being cautious and STILL got in a car wreck. Yea, not fun.... legally my fault, but the other person's speed could have been a huge reason why his car got so messed up. My bumper got bent in a little and my tail light broken. His car lost the mirror on the passenger side and had huge gashes from the hood to the trunk.I was stationary during the impact. I had already pulled out and just put the car in drive and honestly can say I never saw him.... I saw a white car approaching, not 2 white cars... sigh... again... my fault. No one was hurt, which I am thankful for, especially since Cameron was in my car and I was trying to take him to school when it happened. It is just one of the reasons why I would like to get our house on the market and sold.
This all happened before he decide dto bolt out of the front door, so I had some serious fear going on since even I as an adult cant seem to be safe in front of my own house. I ran after him and felt a panic come over me, yet, I was calm and swift at the same time. As I approached, I realized he had stopped to turn the handle on the garage door. He did not make it to the street this time. He was not happy about being carried back into the house, but I was oh so happy that things didn't turn out worse.

I bought some flip latches months ago, but have yet to tackle my husband into doing them on the honey do list. I found these latches that go way high on the door frame out of a child's reach after I realized that the plastic door knob covers wouldn't cut it. This kid is dangerously smart... like figuring out how to stand on different toys to reach the light switch in his bedroom...Or rolling the foot stool over from across the room so he can open and shut the washer door, or reach the cookies from the countertop.
I got tired of waiting on my husband, so I decided that it was too important to wait even another minute.I put my foot down and demanded that he put them on, and he did this weekend finally. This has been a reoccurring pattern in in the household lately. My husband has been coming home well after the kids are supposed to be in bed, and leaving around 8 am. He is working so hard at his job to provide, but as a stay at home mom, it puts all of the burden of raising the kids on my shoulders. That includes therapies,and diffusing the meltdowns while cooking,cleaning and laundry. Doesn't sound too bad until you are in the thick of it. My husband is studying for a big test he has to take soon, so most of his time home, he is still in "work" mode. I think we both need a break from life, kids, work, the household junk... I suppose the only way we can get one is by making our own trips to a padded room in a straight jacket though!

After a particularly stressful day, I finally had enough. Cameron had been crying kicking, slamming doors, pulling his brother down, and melting down from 2:30 till my husband got home at 6:30. It was BY FAR the earliest he had been home in 2 weeks. He even worked till 10 o clock pm the day of our 7th wedding anniversary. We have been so strapped for cash, we didn't even get an anniversary card for each other. I had it. The baby was crying because Cam was slamming his bedroom door shut. The baby was trying to nap. I was out of ideas on trying to get Cameron to stop screaming and slamming things, and kicking. I think I had done a little crying myself. My husband came in the door, I handed him the baby, I grabbed my keys and wallet and without saying a word, I left. I left my phone. I got in my rental car, which, incidentally, my husband had no clue what I.had been driving the past few days. I wanted to get as far away from kids, and those 4 walls of my home. So, I did. I could have found something more constructive to do, or at least taken my phone, but I didn't. I came home about2 1/2 hours later, and felt like a jerk for leaving my husband with that mess. I thought at the time... finally, he can see what i deal with for once. When I got home, I found out that Cam stopped crying about 5 minutes after I left. His crying stopped as abruptly as it started. Figures. My husband works hard for the family too, it is just not the same as I do. I had to take a big step back and realize that this week. He spends so much time trying to make sure we have a roof over our heads and I guess I took him for granted. We are both tired from hard days. It was not fair for me to dump the kids off in his lap at all. We just need to work on balancing duties.... maybe that includes me making some income for the household in some way too.
So, just like that, a new chapter in our lives is opening,and the old one closing. It has been nice to be a stay at home mom in some ways, a prison sentence in others. Maybe I can regain some sanity... I fear now though that I wont even know how to have a conversation with another adult. Can I survive without my daily dose of Nick Jr.? So, maybe I can find a way to be a MOSTLY stay at home mom...

Change

2012-09-02T22:59:00.002-05:00

Cam started school this past week. All I can say is that he is doing new things already. He is wiping his own face with a napkin, chattering more and more, signing much more than he ever has, and takes naps at school. Seriously... naps at school... long naps. They also tell me he is eating most things, but they are having to feed him. He is also playing with forks and spoons a lot more. He began taking a fork, poking it on his plate and putting it to his mouth, although the fork has no food on it, It is such a big

start. He handled the change to school quite well, and
I totally think that the Kids Day Out program had everything to do with it. He was cooperative and friendly every day this past week, and the ratio is at 2 kids to 1 teacher or aide AND an OT, Speech Therapist,or Physical therapist floats between all of the age groups with special needs at the school. I could not be happier. The other day, they basically had 1 on 1 instruction for 3 hours straight... how awesome is that?
His regular pedi appointment went great too. I talked to him also about shots for my younger one, and I asked to wait on a few until he got a little older... He was cool with it. My reasoning is to only give 1 live virus immunization at a time, so the body wont become overwhelmed when combating multiple diseases at once. Most children handle group vaccinations well, but there are some, who, for whatever reason, could benefit from a more personalized approach with a more spaced out scheule. That is why, even the cdc says 12mo-18 mo on the MMR and 12 mo. to 18 months on Varicella. Cam is now in the 50th percentile for weight and his height is hovering around 90th percentile. He has always been tall, but it is great to know he is getting some meat on his bones, or maybe he is averaging out....: / He is tall to me, but it looks like he is still on the thinner boned side compared to his classmates... he is the youngest of them all though. He is basically the only "new" kid in his class, which helps, because the children there already know the "routine" of the day, and he has learned to "follow the pack".

Tuesday, we meet with the Developmental Pedi. She was my original choice when it came to seeking out medical help, but she didn't take our old insurance carrier. Now that we have a new provider, she is covered...whew. We found out though, from others that have seen her that she is pretty conservative with a diagnosis of autism. From what we have heard, she usually doesn't go beyond saying "developmentally delayed" until after age 3 anyway. This appointment isn't a re-evaluation, since he already has his mental diagnosis, but rather, a medical approach to his existing status. He has come so far in a year already, and I am very interested to see what she has to say. On another note....

The boys had a blast at their birthday party, and I am so happy we did it at the venue we used. It was perfect for them, and they enjoyed the swimming so much. A lot of family came and a few other friends. No one came from his Kids Day Out program though. I gave out 70 invites to the KDO, and invited everyone from the program.... might as well! It was probably a combination of a bad day and it being one of the last weekends of the summer. The church had a youth camp that was returning just hours before the party, so I know a lot missed if they had older siblings, or the parents helped out with the camp. The people that did show up seemed to have a great time, so did my boys!

Kevin and I are officially back to bed sharing with Cameron. He used to LOVE going to sleep at night, but not any more. He needs to be brushed on his head lightly, or stroked along his jawline to calm down,and once he is calm, it is pretty easy for him to sleep a good 10 hours if we let him. If you pick him up to carry him to bed, he flips out... or if you try to sneak out of his bed, you will find a familiar face staring you down in the dark at 3 am. I am hoping that this is something we can solve through sensory input, but hopefully, we can come up with a solution soon.
I would like a full nights rest without his head or feet firmly implanted in my ribcage..... and as silly as it sounds, I think it is very important for hubby and I to have our snuggle and pillow talk without a child in our bed. It is hard enough for parents to stay connected and be something other than "mom" or "dad" when they have kids, but when you have a child that requires a parents attention 24/7, it is tough. Ask the mom of a newborn! Luckily, newborns eventually grow up, and HOPEFULLY, this is all just a phase... a phase we are revisiting, but still.... searching for the light at the end of the tunnel!