Minivan Mama

To Be or Not To Be?

2013-05-28T18:03:00.001-04:00

Lately, I have been feeling a push towards a new career path. Through my daughter's IEP process, and by helping a friend through her daughter's complex IEP, it has been suggested to me (multiple times) that I become an Advocate for Children with Special Needs within the school system.

When I was first approached with the idea of becoming an Advocate, I initially waved off the idea. As I told one of the people pushing me to go in the direction of Advocacy, "I don't have enough letters behind my name to have that job.". That was met with the response that you don't necessarily need letters behind your name, you just need to have the knowledge base.

Over the past two years I have been a stay at home mom. I have made it my job to become as well educated as I possibly could be on Special Education law and policy. I have joined committees, I have done numerous hours of research, and I have spoken to as many knowledgeable people as I could. I am sure that I have an enormous amount of information still to learn. The laws and policies change very frequently. If I do choose to go down this career path, I would have to constantly stay up to date on the ever changing Special Education laws. (I would more than likely be staying up to date anyway, with two children who have special needs)

The role of an advocate is nothing to take lightly. It is a huge responsibility to be the one who is responsible for ensuring that a child with special needs gets the Free and Appropriate Education (FAPE) that he/she is entitled to by law. This sounds like it should be an easy task, but in education there are many gray areas. Lots of times it is up to the person running the IEP meetings (usually the Vice Principal) to determine placement and accommodations for these children. With the ever changing law and complexity of each individual child's needs, the person running the meetings is not always up to date with the current policies. That is where I would come into the picture as an Advocate.

I have a background as not only and Pediatric ICU and Neonatal ICU nurse, but also as a Legal Nurse Consultant. I enjoy reading and understanding the law, and I am not intimidated by sitting in an IEP meeting where the school has many professionals in attendance, and I may be the only person there on the behalf of the child and his/her parents. Maybe my past experience has prepared me for a career as an Advocate.

I have not yet decided whether I am going to go down this path, but after so many not so subtle pushes from outside forces, I am prayerfully considering doing so.

The journey continues...

2013-05-24T17:23:00.000-04:00

So here it is. Our second child has recently been diagnosed with autism. My husband is angry, and I am somewhat in denial. My denial is due to some outlying factors. For one, my son also had a massive amount of fluid on his ears at the time of the diagnosis and has since had tubes placed. For another, some other people have said that they didn’t agree with the diagnosis, so that has me totally second guessing everything. I guess only time will tell.

Having a second child diagnosed is no easier than the first. Actually, it is sort of worse because now we know what he has in store for him. Years of therapy, difficulty making friends, rude looks from people who don’t have a clue what we are dealing with. Once again, it brings up the fact that these kids look normal. People jump to conclusions about my parenting skills, or lack thereof, because my children have no physical attributes that would cause someone to think, “of course that child has special needs”.

It is so hard because, my husband and I have totally different ways of coping. When crises occur, I tend to dive into church or bible study. I have numerous friends that I can call at any time when I need to vent. My husband gets angry. He is so upset about the fact that we have another child on the spectrum. As a man though, he doesn’t talk about it to anyone about his feelings. As he says, “What good is talking going to do? It won’t change anything.” The few things that he does say are so negative, that I can only listen to it so long before I shut him down. I know that it’s not the thing that I should do, but when someone is talking about your babies, you, as a mother, tend to get defensive. I rationally know that this is my husband’s way of dealing with things, and he just needs to go through the process, but sometimes the mama bear in me comes out full force.

Since I don’t talk negatively and dwell on what is wrong in my life, sometimes I think that my husband thinks that I am not struggling whatsoever. The opposite is happening. I struggle from minute to minute. I have two kids that need me now more than ever. I have doctor’s appointments and numerous therapies to schedule. I can’t breakdown, because no one is there to pick up the slack. Besides, if I am constantly upset, they feel it. They know when we as parents are unhappy whether they can relay it to us or not.

I learned a long time ago that there are times in your life that you just have to “put on your big girl panties and deal”. It helps me to think about all of the positives that have occurred with my daughter. She has done things that I have never thought possible. If you had told me when she was first diagnosed that she would be in a dance recital and doing the same movements as the other children, I wouldn’t have believed it. Last month, she did a phenomenal job in her dance recital. She loves everything about dance. It is one of the things that she will actually talk about out of the blue. I love that! My husband is mourning the loss of what he had planned for my son’s life. As he calls it, “the boy stuff”. The baseball, football and soccer that may never come to be. My view is that, we never thought our daughter would do what she has done, overcome what she has overcome, but she has more than risen to the occasion time after time. Our son will hopefully do the same.

I told my husband today, if we constantly focus on the negative instead of the positive, we will never be happy. When you have children with special needs, you have to focus on the positives. There is so much stacked against them that we as parents must celebrate all of the small things.

I have learned so much from being the mother of a child with autism. I am more patient, less judgmental of others, and I don’t get as riled up about the stuff that doesn’t matter. When the time comes that I need to advocate for my child, however, that inner fire comes back with a vengeance. My life has been so much improved by having a child with special needs. God gave these children to me for a reason. It is my responsibility to rise to the challenge.

Blessings

2013-05-11T13:16:00.001-04:00

When you go through difficult times, sometimes God speaks to you quietly. The past few days have been rather rough for our family. I have been singing this song over and over again in my head. Though we often do not understand His plan, I continue to be comforted by the fact that His plan is better than mine.

Laura Story - Blessings

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You're near
What if my greatest disappointments
Or the achings of this life
Is the revealing of a greater thirst this world can't satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

The Best Laid Plans

2013-05-06T13:28:00.003-04:00

So, since Mother's Day around the corner, I have been pondering all of the things that I've learned since I became a mother. I'm going to get a little deep here, so just bear with me.

The main thing that I have learned since becoming a mother is that God's plan is so much bigger and better than my own plan.

When my daughter was 26 months old, she was diagnosed with autism. Initially, I was devastated. My whole plan for what her life would be was gone. It had vanished in the blink of an eye. I didn't know where to turn or how to cope with this huge obstacle we as a family were facing.

My daughter is now five. She is a joy and we have been so blessed by having her in our family. We have also been blessed with a happy nineteen month old little boy. He has his own issues with speech that we are battling. Through having had my first child being diagnosed with autism, I have learned to be thankful for the small things that happen each and every day. I don't worry as much about the things that I have no control over. This was initially very difficult for me considering I tend to be a major control freak.

The Lord has truly blessed our family. Even though this is not the path that I would have chosen, it has made me a better person. Though we don't always understand, God's plan is perfect.

Jeremiah 29:11 says, "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

I am so comforted in knowing that He is the one in charge of my life. It is such a weight off of my shoulders knowing that He is in control and wants my family to prosper.

Now back to the lecture at hand...

2013-02-11T14:28:00.000-05:00

Last week, I found myself in a situation that, for me, was completely foreign. For once in my life, I was the mom who looked like I had it all together. I had gotten up a bit early that morning (very rare), gotten myself and the kids bathed and dressed, actually fixed my hair instead of just putting it up in a pony tail, dropped my daughter off at preschool, and then taken the car to be washed. I had just returned from a road trip to North Carolina and the Mini was, needless to say, filthy inside and out. After I got the van washed, I cleaned the inside out thoroughly (another rarity).

When it was time to pick up my daughter, I pulled into the preschool parking lot and was occupied getting my son out of the van. The mom in the car beside me dropped her jaw and stopped me to ask how in the world I was able to have it all together and keep things so tidy. For a brief moment, I was tempted to pretend that I was the perfect mom. I felt like saying, "What do you mean? My van and my children always look like this. Of course I'm never stressed out or running behind." (Yeah right!) In actuality, I did not say anything of the sort. I told her the truth. That we had just returned from a road trip and that earlier that morning my car had, in fact, looked like a trash can had exploded on the inside.

Sometimes we, as mothers, try to hold ourselves to an unattainable standard. We look at the mother in the nice, clean van at preschool and think to ourselves, "Why can't I have it all together like that mom does?". We compare ourselves with other parents all too often. We tend to let jealousy and envy make us feel like we aren't good enough. The truth is, no one has it all together all of the time. We all have our hectic, messy, running around like chickens with our heads cut off moments.

My life has gotten so much less stressful since I realized that I will never be perfect. This was not an easy realization for me to make. As a new mom, I strived to be what society thought of as the ideal mother. After my daughter was diagnosed with autism, I realized that life is about so much more than the appearance of perfection. It is completely normal to be a little frazzled at times. Even we as moms don't always have to have it all together. Our kids need to know that it is OK to not be one hundred percent together one hundred percent of the time.   Showing our kids that it is perfectly fine to be less than perfect teaches them that they don't have to fit some idealistic standard that society has cultivated.

We are raising a culture of "keeping up with the Joneses" kinds of kids. It sometimes seems to be all about who's child is the smartest, who's child is the best athelete, who's child is the most well behaved. I know that we should instill the core value of doing your best in all things, but we need to stop hammering the need for perfection into our kids and just let them be kids. When they grow up, they will learn all too quickly that none of them are perfect. There will always be someone who is smarter, faster, or just plain superior when they compare themselves to the world around them. I think it is much more important to teach them to be happy with who they are as individuals. Strive to instill good morals and values all the while allowing them to be their imperfect little selves. As long as they strive to do their best and be contributing members of society, those are the only things for which they need to hold themselves accountable.

The view from down here.

2013-01-29T19:45:00.000-05:00

I was recently at an event with a group of mothers who were discussing delayed speech in children and when the appropriate time was to call Early Intervention in for an evaluation. From my perspective, it is never too early. If they find nothing, great. But if they do find a delay, they can start therapy immediately. If the child catches up, as most of the kids in Early Intervention do, the therapy can be stopped. If by chance they have a developmental disorder such as autism, the earlier the intervention is started the better. If a parent is concerned about their child's development, contacting Early Intervention is a critical step toward their child succeeding in their preschool years and continuing to succeed in their future academic career.

While the idea of delays and the need for Early Intervention was being discussed, one mother found it imperative to point out while Early Intervention is a good thing, it is also up to the parents to work with their children to teach them to speak. I felt she implied that if your child is not speaking at an age appropriate level, you as a mother must not be pushing them hard enough. I am sure that she meant no harm in her comment. But as a mother of a child with autism and another child with a speech delay, I know that I have tried everything I could think of to get my children to speak. This situation was just another instance where it was implied that I was to blame for my children's delays.

I remember when my daughter was first diagnosed with autism someone at worked asked me, 'How do they know she has autism?". I was still trying to understand the diagnosis myself. The only thing I knew to tell her was that my daughter was two and didn't even have five words yet. Her response was, "Oh, she's your first child. You must do everything for her and she doesn't have to speak". It was like I had been punched in the stomach. Telling a mother that she must be the reason for her child's delays is extremely unfair. Personally, my kids don't sit in front of the television for hours on end. I don't do every little thing for them enabling them to stay silent. I get in the floor and play with them every day. I make animal noises, car sounds and I try to teach them to play pretend with their dolls and action figures. In other words, I have done and continue to do, everything in my power to get them to communicate.

Sometimes, you just need a professional to come in to help jump start your child's communication. The coaching that I have received from the speech therapists through Early Intervention has been invaluable. The therapists are able to educate the parents on the best way to teach their children to communicate. They work with children with speech delays every day. They have the training to know what to do when nothing else has worked. Often, even the most logical things can get overlooked when a mother is so consumed with worry that she can't even begin to think about how to teach her toddler to talk.

The doctor once told me that my daughter would learn to communicate in the same way that I would learn a foreign language. That totally made sense to me. She just wasn't going to learn to talk just by being exposed to the language as most kids do. It was going to be lots of work to teach her how to verbally interact. It has even been suggested that I get the English version of Rosetta Stone to teach her how to speak appropriately and carry on conversations. I could have waited until the end of time to give her something to eat or play with. It still wouldn't have forced her to speak when she didn't have the fundamental ability. She wasn't wired to understand information the same way other, neuro-typical children learn.

I know people mean well, but when a child is delayed, the last thing a mother needs to hear is that she isn't trying hard enough to get them to talk or interact. It is very easy to look down your nose at others and judge when you are on the outside looking in. You may not even realize that is what you are doing. A mother of normally developing children may think The mother of normally developing children may think that there should be a very simple fix to a child not speaking. But whe But, when a child is truly developmentally delayed, things aren't so easy. When you have a child that you can't get to look at you much less talk to you, communicating with that child feels like an enormous mountain you are continually trying to climb.   When a child is not developing normally, all the mother really needs to hear are words of support and encouragement, not wagging fingers and shaking heads.

IEP: Incredibly Emotional Processs

2013-01-22T20:24:00.002-05:00

Lately, I have been focusing a lot of my energy on researching what the law says about education as it pertains to a special needs child. More specifically, as it pertains to my special needs child who is going to be entering kindergarten this fall. For those out there who are new to the IEP (indvidualized education program) developing process, I want to pass on a little of what I have learned so far. I still have miles to go, but I wanted to share what little information that I have already gleaned.

First of all, the law governing the education of students with special needs is the IDEA (Individuals with Disabilities Education Act). You can Google it and find a copy online. This law states that all students with special needs are entitled to a Free and Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE). Of course, this leaves a lot of room for interpretation, so as a parent, you must be vigilant when it comes to advocating for your child.

Always tape record everything. If it is not recorded via a audio recorder, and it isn't documented on the official IEP, it is as if it was never said. Lots of times, school officials will make comments during meetings such as, "That gets worked on anyway." or, "It doesn't really need to be a part of the IEP." That may be true, but if it has been recorded, they must follow through and implement what was said in the meeting. I also have a hard time remembering everything that is said in a two to three hour meeting. An audio recording helps me to recall who said what and when it was said. Be sure to let all others who are at the meeting know that you are tape recording it, otherwise, the recording may be inadmissible if you ever end up going down the road of mediation or litigation.

I have learned that walking away from the IEP meeting and not signing the IEP speaks volumes. It means that you do not agree with the proposed plan. It also means that your child's case will quickly be moved up the chain to someone who probably has enough power to help to resolve the issues. Many parents that I have spoken with don't realize that this is even an option. Personally, I think that it is the best way to get your voice heard by those in power. If the issues are not resolved, there is always mediation or, worst case scenario, litigation. I pray that we never end up going that route, but we are going into each meeting with our eyes open to the fact that it is always a possibility.

If you don't understand the law, there are resources out there that can help you navigate the system. Most school systems have a Parent Resource Center that can help sort through some of the red tape (this is a free service offered to all parents of preschool through high school students). You can also get ideas from parents who have been there by attending support groups or networking with them on social media. A word of warning though, be sure to take everything you hear from other parents with a grain of salt. Being a parent of a child with special needs can stir up some serious emotions. Every decision the school system makes can be taken very personally. Also, be sure not to react to hastily at the school meetings regarding your child. The heat of the moment is not always the best time to give your final opinion. Sometimes you have to take the time to step away, take a deep breath, and reflect back on the situation when you are thinking more rationally.

I truly believe that the majority of people working in the school system care about every child that attends their school. (My parents are both teachers for goodness sakes!) But, I also know the reality of the situation is that they have very limited resources and must pick and choose how and where to allocate the small amount of funding that they receive. I encourage all parents of children with special needs to do their own research. No one else is going to do it for you. Go into these meetings as prepared as possible. You must advocate for your child. Give them a voice in each meeting that is held regarding their education. If you speak for them now, maybe, one day, they will eventually be able to speak for themselves.

There she is...

2013-01-11T21:15:00.000-05:00

If you weren't already aware, there is an amazing woman with autism competing in the Miss America Pagent tomorrow night. Her name is Alexis Weinman and she is from Montana. As a true blue North Carolina girl, it will be a rare event that I will be rooting for someone to win other than Miss NC, but this young woman's story is so inspiring, I can't imagine supporting anyone else.

As the mother of a little girl with autism, I am in awe of what this woman has accomplished. When people think of autism, there is such a stigma. These kids will never be social, they will never be able to publicly speak, they will surely have some kind of solitary career where interaction with others is minimal. These are some things people, including myself at times, tend to think about children with autism. The fact that a woman with autism is in such a public position, has already been already crowned Miss Montana, and is in the running for Miss America, is mind blowing. How much more social of a job can one have. She must daily interact with others, speak publicly on a routine basis, and she will be scrutinized daily by those who find it easy to judge, but difficult to really understand someone with autism.

I was in tears tonight as I saw her parents interviewed on television. The pride that they feel must be completely overwhelming. When your child has any type of special needs, you, as a parent, can't help but assume that there will be limitations on their future. The amount of hope that this girl has given to a nation where 1 in 88 children are diagnosed with autism, is unfathomable. I have said before that I have grieved over the loss of what my daughter's future could be. I am guilty of assuming that this diagnosis will surely determine the avenues that her life will take. The fact that this girl has triumphed over the enormous obstacle of an autism diagnosis is eye opening to me as a parent of a child on the spectrum.

I have a t shirt that says, "Autism: Different, not less". I never really grasped the true meaning of that phrase until recently. Hopefully, I will no longer let my own preconceived ideas of autism dictate my perception of my daughter's future. She can do anything and be anything. Just because she is on the spectrum doesn't mean she has to fit into the little box of what society thinks a child with autism will end up as. Her future does not have to be a result of her diagnosis. Her future can be a result of her ability to overcome whatever difficulties she may face.

I am not under the assumption that my little girl is going to be the next Miss America. That would be great, but I really don't think she's the pageant type. What I am saying, is that she can be anything that she sets her mind to be. The Lord only knows what the future holds for my daughter. I will continue to trust in Him and the fact that He has said, "...For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and future." As long as my daughter knows that He holds her future, I am positive that she will surely prosper in whatever lies ahead.

Another day, another dilemma

2012-12-16T20:54:00.003-05:00

So, I know that I haven't blogged in a while. A lot of things have been going on in my busy life. We have recently gotten our daughter reevaluated to determine eligibility for special education services when she begins kindergarten next year. This evaluation consists of numerous observations and standardized testing scenarios. This has made our already hectic schedule even more hectic than usual.

Her recent eligibility meeting determined that she does fall under the Autism label within the school system. Previously she was under the label of Developmental Delay. I am extremely concerned about the change of labels. Those within the school system have told me that labels do not determine placement. I will believe it when I see it. The area we live in doesn't seem to offer much when it comes to full inclusion in schools. What usually happens is that the kids with Autism spend sometime in a regular classroom, but a good part of their day is spent in a self contained autism classroom. I have made it known that this is not an appropriate placement for my child. With minor assistance, I am sure that she will be able to function in a regular kindergarten classroom with minimal pull out. Hopefully we will be able to rock the boat and get my little girl the "Free and Appropriate Education" that she is entitled to by law.

At this point though, she is doing really well. She is talking and commenting more, and has even developed somewhat of a sense of humor. She has started to say things that are kind of off the wall and then laugh. The other day, I asked her what her teddy bear's name was and she replied, "Ellie", and then she killed herself laughing like it was the funniest thing she had ever heard. I am thrilled that she is able to start to find the humor in life. Do you know how hard it is to teach someone to have a sense of humor?!? It is nearly impossible to explain why something is funny, and by the time you have explained it, it really isn't that funny anymore.

I have also been quite concerned about my son. He is almost 15 months now and is still quite delayed with his speech. He is getting speech therapy once a week and is making progress. But when you have one child on the Autism Spectrum, you tend to over analyze and worry about anything that your second child does that could be seen as odd. Especially when your second child is a boy and Autism is so much more prevelent in boys.

My son is in a sibling study at a major autism research center. He will be evaluated every four months for the next year, and then he will be seen once or twice a year after that. They look at every aspect of his development. When I recently took him to his 14 month visit, I was very concerned. They did confirm that he has a significant speech delay. When I asked them point blank if they thought we should go ahead and pursue ABA therapy for him, the evaluator said,"Not at all." She sees many children on the spectrum and she did not think that he fell into the category of autism. It's amazing how relieved I felt. I didn't even realize how worried I had been. I think that my worry is what has kept me from blogging for such a long while. I just couldn't write about what was going on while everything was still so up in the air. I guess in my mind, if I wrote about it, then it might have come true.

I am well aware that we are not completely out of the woods with my son. Until he starts really talking and engaging with other children, I probably won't be able to fully relax. But in the meantime, I am going to try to take it day by day and focus on all of our many blessings. As recent national events have shown, you never know how long you have with your children. I intend to try my hardest to make their lives as full of joy as I possibly can. This may mean more time playing and less time cooking or cleaning. (Not that I have ever really been Suzie homemaker or Betty Crocker.) I just think that they will benefit more by my being emotionally present in their lives than if I was merely physically present with a really clean house and a huge meal on the table everyday.

My Little Patriot

2012-11-12T09:17:00.001-05:00

It's amazing how oblivious you can be to what your kids really know. The other day, I was coming home from an appointment with my son. I pulled up and saw my daughter in the yard carrying around one of those little Lowe's flags that you can use to mark where your irrigation system is located. I just thought that she was playing with the flag and waving it around. When I got out of the car, my babysitter proceeds to inform me that my daughter had just said the Pledge of Allegiance to the Lowe's Home Improvement flag. I didn't even know that she knew the Pledge. Later that day, I asked her to say it again, and there she stood with her hand over her heart and recited the entire pledge. My child that doesn't really talk and is socially inappropriate knew exactly what she was supposed to say and do when she saw a flag. I find that astonishing.

It goes to show that you never know what your child is picking up on, or what they already know. I think that my daughter has a huge amount of information stored up there in her little brain. Little by little, she is conveying it to us.

This little experience makes me realize that I have to be acutely aware of my daily actions. She is watching what I say and do, and although I may not really think that she is paying attention to me, she is taking in much more than I realize.

Don't Judge a Book by it's Cover

2012-10-12T09:27:00.003-04:00

My daughter has horse therapy each week. I recently had to call the director and speak with her about a few concerns I had. My daughter was enjoying riding but she would kind of shut down after each session. It would take a good thirty minutes or so for her to start talking to and making eye contact with me again. The volunteers that were helping her would ask her to say or do something during the session, and when she would ignore them, they would just keep walking beside her horse and let it go. If you know my daughter, you know that she will test you to see how much she can get away with. If she doesn't have to talk, she won't. If you cater to her, she will take full advantage. Not that I blame her. If people catered to me all day, I would probably sit back and let them also.

When we arrived at horse therapy yesterday, they had placed a younger volunteer with her. I am sure she was probably in college, but she looked like she could have been in high school. I thought to myself, here we go again. Surely, this young girl wouldn't have any clue how to deal with my daughter with autism.

Well, I am happy to admit that I was completely wrong. This girl had my daughter saying and doing things on the horse that none of the other volunteers had been able to. She was kind to my little girl, but she insisted that when she asked a question that my daughter answered. They were a perfect match. After the session, my daughter was more engaged with me. She made great eye contact and answered when I asked her about the lesson. This is a huge improvement from the previous sessions.

Even though I have spoken previously about not judging others, I realize that I am sometimes guilty of doing just that. This little experience has opened my eyes to the fact that if I expect others to be less judgmental, then I need to hold myself to those same standards. I will do my best to be less skeptical regarding the people who work with my daughter. Maybe one of these days I will listen to my own advice and not "judge a book by it's cover".

Reality Check

2012-10-08T19:40:00.001-04:00

So, I took my daughter to her new "school" speech therapist today. I say "school" therapist, because my daughter also gets private speech therapy each week. The new therapist is located in what will probably be my my children's elementary school. As I pulled up to the school, a million thoughts ran through my head. Reality hit me smack in the face.

I can't believe that my little girl is almost old enough to be going to "big" school. In less than a year, she will be a student there. The thought of having to pull up in the car rider's line and possibly having to just drop her off terrifies me. Will I be able to walk her in each morning? Will they make exceptions to the rule that kids have to walk to their own classrooms, or will she be ushered in by some random person. What if she gets lost and no one realizes. What if she throws a tantrum and the people around don't know how to deal with it, or worse, what if they yell at her because they do not realize that she has autism. I mean, she looks normal, so it is very possible that somewhere down the line someone will fuss at her for not responding to them, or ignoring them when they tell her something.

The idea of her spending an entire school day on her own terrifies me. I know we have yet to decide what her education plan will be like for next year. But I still couldn't help but feel overwhelmed when I pulled up to her "big" school. Hopefully by next year, I will be more mentally prepared.

From the heart.

2012-10-05T09:32:00.000-04:00

When I got to my daughter's preschool yesterday, the assistant teacher met me at the door and said, "Your daughter made me cry today". I immediately thought, "Oh Lord, what has she done now?". The teacher, Miss Jennifer, has gotten another position at a county run preschool and is going to be finishing out this week and then leaving this preschool. She started tearing up again as she told me what had happened. Evidently, my daughter had gotten dirt in her eye on the playground and was whimpering. The teacher pulled her up onto her lap and was trying to convince my little girl to let her see her eye. My daughter said, "No" quite emphatically multiple times. When she couldn't think of how she could convince my daughter to let her see her eye, the teacher told her, "Miss Jennifer is leaving next week and we won't get to see each other anymore. Can I please see your eye?" My daughter immediately stopped crying, looked up at Miss Jennifer, and said, "Don't go Jennifer". Jennifer said that she couldn't help but start to cry. If any of the other kids had said this to her she probably wouldn't have gotten so emotional. But that fact that my daughter, who rarely speaks, actually looked her in the eye and said this to her really touched her. I was touched when Miss Jennifer told me too. I hate that Miss Jennifer is leaving, but I am thankful that she was able to make a connection with my daughter.

My daughter never ceases to amaze me. She doesn't say much, but what she does say is full of meaning and comes straight from her heart. Sometimes we question whether she is understanding what is being said to her. This shows me that she understands more than we give her credit for. Maybe if we just slow down and listen more, we will get a clearer view into her little world.

The Secret's Out.

2012-10-02T20:38:00.002-04:00

When my daughter was diagnosed with autism, my husband and I had no clue what that really meant. We walked out of the doctor's office and had no idea what to do or where to turn. We just knew that our daughter's life would never be what we had envisioned.

It took us some time to tell our families. It took us even longer to tell our friends. We had so many questions. What if the doctor was wrong and we had prematurely labeled our child with this diagnosis that has such an ugly stigma. Would she grow out of it and no one would ever have to know? It seemed so similar to having a death in the family. We went through the five stages of grief (Denial, Anger, Bargaining, Depression and Acceptance). The bad part was that we went through all of this completely on our own. It was not that we didn't trust our family and friends to be understanding. We just couldn't bear the thought of facing the multitude of questions we knew we would receive. I mean, how on earth could we answer the questions that others surely would have, when we were still searching for our own answers.

We eventually told our immediate families. We talked it over and decided not to tell aunts, uncles, cousins or friends at that time. Telling everyone would make the diagnosis real. It was almost as if, as long as we didn't talk about it, it couldn't be so. Of course, the autism didn't go away. The doctor wasn't wrong. That meant we eventually had to tell the rest of our family and our friends. The reactions that we received varied greatly. Some just said how sorry they were that this had happened to us. Others questioned the diagnosis with statements like, "What in the world makes the doctor think that?" Nothing that anyone said could have helped. We didn't want people to feel sorry for us, and we sure didn't feel like having to justify a diagnosis that we would have given anything to have been wrong.

I sadly remember that we decided not to tell my daughter's cousins. We just felt that they were too young, and we didn't want them to treat her differently or think differently about her. I later found out that the older cousin had overheard her grandmother speaking to a friend at church about her granddaughter having autism. The older cousin was so upset. She cried to her mother and said, "how could this lady at church know that her cousin had autism, when she didn't know and she was family." When I found out that this had happened it broke my heart. I was not mad at my mother in law for talking to her friend about my daughter having autism. She surely needed someone to talk to and we needed all the prayers we could get. This event just helped me to see that we weren't doing anyone any favors by keeping the information to ourselves. I felt like I had wronged my niece by not trusting her with this information. She was young but has always been mature. Looking back, we should have been up front with her about the autism diagnosis. My niece is growing into a beautiful young woman and she is absolutely wonderful with my daughter.

Since the time after my daughter's diagnosis, my outlook has totally changed. I felt so alone after I was told my daughter had autism. But when I finally started confiding in others about my situation, it was amazing the amount of people who had a child or knew a friend whose child was on the spectrum. If people had been more vocal about their own experiences, I probably wouldn't have felt quite so alone during that scary time.

The fact that one in eighty-eight kids is diagnosed with autism speaks to the fact that many more people are affected by this diagnosis than we realize. Just because children with autism have trouble speaking, that doesn't mean that the families and friends of the children should have no voice. My goal is to increase awareness. I hope that others who are in the midst of the grieving process after receiving an autism diagnosis won't feel quite so alone in their journey.

Have you ever?

2012-09-29T19:17:00.003-04:00

I have a question for all the moms out there. Have you ever been riding down the road after dropping the kids off somewhere or leaving them with your husband at home, and notice after a good five or ten minutes that you have been rocking out to Elmo in the car all by yourself? Oh, you haven't? Maybe it's just me then.

My kids love to watch the dvd player in the car. We always have on Barney, Elmo, or some other (not annoying at all) DVD playing. My daughter has yet to master wearing the headphones for any length of time. She usually will wear them for about five minutes and then take them off and drop them in the floor. Then she will say, "Sound on please". She doesn't understand that she would be able to hear if she would just leave the stinking headphones on.

Since the kids don't wear the headphones with any consistency yet, I am often left to endure listening to the wonderful music they just can't seem to get enough of. As much as I hate to admit it, after a little while, I can't help but start bobbing my head a little. This is only really embarrassing when I am the only one in the car, and I have forgotten that I am finally on my own. Sometimes life is just so busy that when I finally have a little bit of a break, I forget how to be a real person, not just a mom. Thank goodness no one else can hear what I have been listening to. I still feel embarrassed when I finally pay enough attention and realize what I am doing.

When I do find myself kid free (even if it is just for a trip to the store), I will immediately turn to a radio station, or I play a CD that I love. I get so much satisfaction out of those few minutes of alone time. Sometimes it is just so nice to be able to focus on no one but yourself. I love being a mom, but it is also nice to just be me once in a while (even if those times are few and far between).

Method to my madness.

2012-09-27T20:32:00.000-04:00

This week has been insanely busy. On top of my daughter's many therapies and activities, I have decided to join some advisory councils. Yes, I said councils, plural. You think that I am crazy, right? There is a method to my madness. I don't think that I'm crazy, I'm just really invested in my kids.

I have joined the interagency coordinating council in our county. It has representatives from Child Find, Early Intervention, DSS, Smart Start, the Arc, etc. I think that this will be a perfect place for me to be able to network with the people who have the power to make decisions that affect my children. Since I have a child in Child Find and another in Early Intervention, it's kind of like they get a two for one deal by having me as a parent representative on the council.

I have also joined the Advisory council for the special needs preschool in our area. My daughter does not attend this particular school, but her resource teacher is based there. They wanted someone who could speak to the needs of the children who are being resourced. My reason for joining this council is so that I can gain as much information as possible over the next school year. When the time comes for me to make decisions regarding my daughter's elementary school placement and benefits, I hope to be as knowledgeable as possible. I also figure that it won't hurt to try to get on the good side of those who will be in those decision making meetings.

Hopefully I am not spreading myself too thin. I do have someone to help out with the kids during these meetings, so I don't have to drag them along kicking and screaming. I don't really think that I am crazy for having a schedule as jam packed as mine. I am just looking for every opportunity I can to help my daughter (and eventually, my son) be able to succeed in the school system.

That's what friends are for.

2012-09-24T16:12:00.001-04:00

When my daughter was around eighteen months old, I started noticing that she wasn't talking, she often avoided my gaze, and she rarely acknowledged the presence of anyone else in the room with her. Since we were fairly new to our community, and we didn't have many friends or family seeing our daughter on a regular basis, our friends and relatives we talked to on the phone often downplayed our concerns. I frequently heard, "you are a PICU nurse, you are just used to looking for something to be wrong", or "This is your first child, she will talk in her own time". As a mother, this was surely what I wanted to hear. I wanted others to tell me that I was crazy, and of course that my daughter was fine.

Even though my little girl didn't meet her milestones at her 12 month and 18 month doctor's visits, the doctors assured me that all kids develop at a different pace, and that we should wait until the next visit to see how she was progressing. I know now, that early intervention is key. I feel like kicking myself for not pushing the issue with her doctors, but once again, I wanted them to tell me that everything was fine.

It wasn't until my best friend and her family were visiting that I came to the realization that something was truly wrong. My friend has three children. At the time their ages were 12, 5, and 18 months. Her little girl was just about six months younger than my daughter. While they were visiting, it was very apparent that my daughter was delayed. My friend's little girl was following two and three step directions. She would look at you and answer immediately when she was asked a question. She was basically running developmental circles around my daughter. When my friend's family was interacting with my daughter, she rarely looked at anyone when they spoke to her. She didn't respond to questions, and she surely didn't follow directions, one step or otherwise. She had quite a few meltdowns while they were visiting. She wasn't used to having that many people around, and she didn't know how to cope with being so overwhelmed.

One night, after a particularly trying day, I put my daughter to bed and I sat down on the couch with my friend and started crying. It was so apparent that something was wrong with my daughter. She was just so delayed compared to my friend's daughter. My friend sat with me and affirmed that she also recognized that something was not right. I can only imagine how hard this was for her to say to me.   It takes a true friend to sit down with you and be totally honest in such a uncomfortable situation. I could have been angry with her, I could have stopped talking to her, but she cared enough to say what needed to be said. I love her dearly, and through both of our personal trials, we have only gotten closer. It is rare to have someone who you know, without a doubt, will be there for you no matter what. I will be eternally grateful to her for being so honest and for caring enough about me and my daughter that she would tell me the truth instead of telling me what I wanted to hear. I am very blessed to have her in my life.

After that visit, I started to get ball rolling. I sought help from people at work (the hospital) who had experience with developmental delays, and I started looking into the Early Intervention Program through the county. When her two year old appointment came up, I did not ask what the doctor thought, I went into the appointment and I insisted that we see a developmental pediatrician. My friend's family came to visit at Thanksgiving. By December, my daughter was receiving OT and ST. By the next March, she had officially been diagnosed with Autism.

If we hadn't pushed to get her services, who knows how long it would have taken for the doctors to recognize that there was need for them. If my friend hadn't been so honest, who knows how long it would have been before I acknowledged that my daughter was delayed. Even though hearing that something was wrong, and finally receiving the autism diagnosis was probably the most challenging time in my life, I learned some things through dealing with it. One, I am very blessed to have such a wonderful friend and support system. Two, I am stronger than I realized. I never thought that I would be able to deal with a special needs child, but God continues to daily give me patience and gradually he is helping me to accept this diagnosis. Three, I realized that I have to be my child's advocate. A mother always knows when something is not quite right. In nursing, I would often get a gut feeling that often turned out to be spot on. As a mother, I had that gut feeling, but I second guessed myself constantly when others told me that everything was fine. Now, if I feel that something is not right, I push the doctors, teachers, and therapists until whatever is going on is recognized.

I am a stronger woman because of this experience. I think that I was supposed to have a child with autism. I don't think that it was a mistake. God gave her to me to make me a better person, and I couldn't love her more.

What did you say?

2012-09-20T16:28:00.001-04:00

So I took my little guy to the Audiologist to get his hearing checked. We didn't really suspect hearing loss, but when your baby isn't babbling, they usually rule it out.

Well, my baby that doesn't babble started babbling up a storm the minute we got into the office. He was loud and making all kinds of sounds (ga, ba, da). He was babbling so much that the woman behind the desk actually peeked her head around the corner and asked why I wanted him evaluated. I said, "It's because he doesn't babble. Can't you tell?" (as he continued to babble away).

About a month ago, all he was saying was Aahh. In no time at all though, he has really found his voice. He seems to be babbling more each day. This of course is music to my ears. We are still continuing speech therapy for the time being. I want him to continue to progress until he is talking age appropriately before we stop. Maybe the speech therapy was just the little push he needed to be encouraged to talk.

By the way, he passed his hearing test with flying colors!

We often assume that our children will do things in their own time. But, after you've had a child diagnosed with autism, you tend to watch each child's development like a hawk. Hopefully he will continue to develop his communication skills, and by the time we visit the developmental pediatrician again, my boy will be meeting his milestones.
But, in this moment, I am just thankful that he is starting to learn to communicate with us vocally.

1 in 88

2012-09-19T20:25:00.003-04:00

When my daughter was diagnosed with autism, I felt completely blindsided. I was prepared for all kinds of other issues, and even though autism affects so many kids, I had never really thought of it as a possibility with my own child.

I knew that I could have a child and there could be an accident at any time. I saw things like that all to often working in the Pediatric ICU. I also didn't count out the fact that I could have a child with a heart issue or who developed cancer. I saw those things often as well. Even with the multitude of different diagnoses that I saw each day, I never even considered autism as a potential issue.

I vividly remember a day, not long after my daughter had been diagnosed, that I was working in the Neonatal ICU. I was in a back room (thank goodness), and I was feeding and rocking a baby that had down's syndrome. I remember just looking at the baby with tears streaming down my face, thinking, "People will always know that something is different about you". I never thought that I would feel jealous over the fact that my child only had a developmental delay instead of having a physical problem. I was sad that my child would always be looked at as a brat, not a child with a disability. When others observe my child, they just look at her like she is weird or at me like I am a bad parent. No one ever thinks, "that child must have a developmental disorder". If she had some type of physical deformity as well, others would probably think differently about her.

A child with a physical deformity often receives more understanding from the general public. A child with autism usually gets dirty looks due to their "bad" behavior. My husband tends to get somewhat embarrassed when my daughter throws a fit in public. Since she looks normal, we as parents tend to try to prevent her from acting up, or we feel that we have to explain our child's diagnosis to random bystanders. It is as if when the strangers understand that something really is different, then we will not look like slacker parents, and our daughter will not look like a brat.

Sometimes though, I don't feel like explaining anything to anyone. I feel like I should be able to go out and not have to worry about the opinions and rude looks given to us by others. I have seen these shirts that you can get for your child to wear that say, "I'm not misbehaving, I have autism". I think that it is great for others to recognize that something is different, but this also can call unnecessary attention to the child.

It is my hope that one day people will be more accepting. If more education is given to the general public, I believe that society as a whole will rally around these children. But, if I as a medical professional didn't really know the first thing about autism, how in the world will the rest of society ever learn enough to be able to accept the one in eighty-eight babies that are born who will eventually be diagnosed with autism?

Brother and Sisterly Love

2012-09-18T20:13:00.001-04:00

Even though my daughter tends to have a short fuse when it comes to my son, I know she loves her little brother.

The first time I realized that she really cared about him was when we were visiting my parents. The kids and I had ran an errand in town, and we had just arrived back at Mimi and Granddaddy's house. I decided that since I was alone I would take my four year old inside the house first. Previously I had either been with someone else who could help with both kids, or I had been in the garage with the door shut so my daughter couldn't escape while I was tending to my son. Well, my daughter and I got to the front door, and as I unlocked it and began to set the bags that I had been carrying down, my daughter said my son's name loudly. She was telling me that I better not forget her brother. This was a huge step considering that up until this incident, she had either ignored or fussed about her brother. I thanked her for telling me to get him, and I promptly went back to the car and brought him inside.

She looks out for her brother in her own little way. If he is getting into something, is trying to climb the stairs, or is touching something she thinks that he shouldn't be, she says loudly, "I need help please". She makes sure that I am aware anytime he is doing anything the least bit naughty. This is really big for her, because it means that she is actually starting to pay attention to someone other than herself. Kids with autism are often very ego-centric, it is hard for them to think about anyone except themselves or anything that doesn't effect them individually. The fact that she pays any attention to him at all is amazing. Lately, she has even started to physically put her arms around his waist to pick him up when she thinks that he is doing something he shouldn't.

My son definitely loves his big sister. I will never forget his serious expression whenever we spun her around or played with her by turning her upside down (this type of play helps with sensory issues). He was about five months old at the time. He would just watch us stone faced. It was like he was thinking, "You better not drop my sister". He always wants to be near her and is interested in whatever she is doing or playing with. He smiles at her whenever he sees her. Often times, she wants nothing to do with him, and heaven forbid he touch her toys, but he is evermore the persistent child. If she would just let him into her little world, they could have so much fun together.

It is remarkable that they can care for one another the way that they do. It is almost as if it was ingrained in them from birth that you need to take care of your sibling no matter what. Hopefully as they both get older, they will be able to play together more. If his language comes along, as I pray it will, maybe hers will improve as well. Hopefully, over the years, they will be able to enrich each others lives in ways that no one else, other than a sibling, could.

Deja Vu All Over Again

2012-09-16T20:50:00.000-04:00

My son has been getting speech therapy for the past month.   As you can probably imagine, I am pretty concerned about him having any sort of delay.

Whenever I tell someone that he is getting speech therapy, they ask, "How on earth can they already tell if there is a speech delay, he's not even a year old?" People sometimes say things like, "I am sure he will be fine"," You are just looking for something to be wrong", or "He's a boy. Boys talk later than girls". Well, I pray that all of these things are true, but I know that it won't help anything if I just stick my head in the sand and ignore reality. If he does have autism, early intervention is key. The earlier we can start therapies, the better chance he has at overcoming any developmental obstacles he is facing. At ten months he wasn't saying anything but "Aaaah". Not ma-ma, da-da, ga-ga, ba-ba, etc. They identify that as a communication delay, so we started speech therapy.

We are trying to be optimistic. But even though we hope for the best, we try to prepare ourselves for the worst. Research has shown that siblings of children with autism tend to have speech delays. With my son, it probably has to do with the fact that my daughter will scream at him or throw a tantrum when he starts babbling. I don't know if it just gets on her nerves or what the exact problem is, but I can't seem to stop her from fussing when he makes vocalizations. In ABA therapy we sometimes bring my son into the sessions so we can try to identify ways that we can get them to play together more, and her tolerance for his babbling and his constant attempts to get into her space will get better.

I do recognize that my children are very different from one another. My son does things that I don't remember my daughter doing. He laughs easily, he cries when people leave the room, and he dances to music. It took a lot to make my daughter laugh, she could have cared less whether anyone else was in the room or not, and I never remember her bouncing up and down to music. Socially, my son is very age appropriate. He smiles, laughs and cries when he wants your attention. All good things.

I pray that my son doesn't have autism. In no way does this mean that I don't love my daughter for the amazing person she is. She is so smart. She is only four and can read and count to who knows how high, but I know her life would be so much easier if she was "normal". It is so sad when she doesn't play with or even pay attention to her little brother. It hurts my heart when she completely ignores other kids and then they look at her funny; when she goes somewhere like dance class and starts running around singing songs instead of sitting down like the other little girls, I hate it when I see other mothers start to whisper about her. I accept her totally for the person she is, but I know that she has a very hard road ahead of her.

My son is already making progress with his babbling. I am hoping that he is just a little delayed, but in the back of my mind I will always be wondering if he could be on the spectrum also.

We thought about that possibility when we decided to have another child. Since they don't know what causes autism, it could be genetic. We really struggled with the decision to have another baby. We finally decided that God had given my daughter to us for a reason, and if he decided to bless us with another child, no matter what, that is what we would view it as, a blessing.

I am a better person for having been given the opportunity to raise her. I am much more patient, much less hot headed, and I don't worry over the little things that I have no control over. I have learned to accept that God is in control and not me. For a somewhat controlling person, this has not been easy. I like having a plan. I like knowing what is coming up next. He has no doubt shown me that my insistence on always having to have a plan was ludicrous. I have no real control over anything. I just have to take each situation as it comes, and adapt as best I can to whatever is placed in my path.

Since my daughter was diagnosed, I have found that I can make all the plans in the world, but I still have no idea what tomorrow will bring. I try my best to take life day by day and to enjoy the little victories instead of waiting for something really big to rejoice in. I have to be happy where I am. Who knows where I will be tomorrow?

Little Miss Independant

2012-09-14T21:00:00.001-04:00

So last week my husband asked me, "How are you going to keep that blog thing going? Won't you eventually stop having anything to write about?" I told him that with our kids, I would always have something random happening that I could put in my blog. Well this week, my little lady did not disappoint.

So, my daughter was in the den on her Ipad. This is not unusual for her as it is one of her favorite things to do. I was in the study doing something on the computer. After a few minutes, my daughter came into the study and started grabbing at my arm. This, however, was very unusual. My little electronic genius is normally so engulfed in her Ipad that she doesn't bother me for a while. I take those opportunities to get my mommy stuff done. You know, cleaning up the room for the millionth time each day, working on the computer, etc. Besides, she normally just says what she wants from wherever she is sitting. Not to often does she physically get up and come get me for something.

As I started to ask her what she needs, I turned away from the computer and I immediately smelled smoke. I ran into the den and I saw that the entire kitchen was full of smoke. My first thought was not that I had to get everyone out of the house and to safety, it was that I had to put out whatever is on fire and get the smoke out of here before it sets off the fire alarm and wakes up my son. Not the most rational thing to have thought, I realize now, but after having waited all afternoon for him to finally take a nap, I can tell you that I feel validated in having had those thoughts.

When I got into the kitchen, I saw that a chair had been pulled up to the counter, and the microwave door was open with a very crispy black eggo inside. The only reason that I knew it was an eggo was because the opened box was still on the counter and the freezer door was still open. I don't know whether the eggo had actually been on fire, or it had just been smoking, but I do know that every time I turn on the microwave now, it makes my kitchen smell like smoke again.

When I told the therapists what had happened, they asked me what I said to her. To be honest, I was so shocked that I probably didn't say much of anything. After I finally regained my composure, I told her that she needs to get mommy when she wants to use the microwave. I do wonder if she understands the danger though. Who knows if she will come and get me next time? My husband asked if we should just teach her which buttons to push on the microwave so she knows how to use it properly. I think that she could more that likely learn how to work the microwave, but something just doesn't feel right about teaching a four year old how to use a cooking appliance. For now, we are putting that one on hold.

You never know what is going to happen in my house day to day. My daughter had never tried to use the microwave before, so I had no reason to think that she would that day. It just proves the point that you can't trust a four year old who is quick and quiet. Now I realize that I need to keep my eyes on her at all times (if that is possible when you have more than one kid). I will try to do my best. But just to be safe, I have made sure that we know where the fire extinguisher is in case she ever tries to imitate Julia Child again.

Uncharted Territory

2012-09-13T13:01:00.001-04:00

I feel like I am entering into uncharted territory. With all of my daughter's therapies, I have always felt that our life has been fairly busy. But I am afraid that until now, we "ain't seen nothing yet".

I am not ashamed to admit that I am a homebody. I have always said that if I could stay within the four walls of my home for days at a time, I would be perfectly happy. Once again, God has shown me that he has other plans for my life. I have definitely had to adapt to the fact that His plan is turning out to be very different that mine.

Our new schedule, or to be more exact, my daughter's new schedule, is crazy! This has been the first week of five mornings of preschool. We have also started dance therapy and we continue horse therapy. ABA each day and private Speech Therapy once a week continue as well. In the next few weeks, we will add a social skills group at preschool and additional Speech Therapy within the school system.

Every day is filled with my chauffeuring her to and from her numerous activities. Thank goodness that I have a "Mom's" calender that I can keep up with everything. It has a daily column for each family member. I start each morning looking to see what that day's activities are. My mother has already bought me one for next year that I plan to start filling up as soon as I get it this weekend. If I didn't have this calendar, I could never keep up with all of the things that our family has scheduled.

Prior to this week, I had some anxiety over whether we were scheduling too many things for my daughter. So far though, she seems to love everything she is doing. She has had less tantrums and fewer potty accidents this week. Being busy seems to suit her.   She is definitely more like my husband in this regard. He always has to be doing something. Whether he is fiddling in the garage, or taking care of the yard, he always has to fill any downtime with things to keep him busy. The only time he sits down is in the evening after the kids have gone to bed. I, on the other hand, am not like this. If I get a chance to rest, I take full advantage of it. One of the best gifts that I have ever gotten was a nap for my birthday. My husband took the kids out of the house and I was able to nap for three glorious hours. It was wonderful. My husband swears by ten minute power naps. These do nothing but make me more tired.

I feel very blessed that my daughter is adapting to her new schedule so well. Lots of kids with autism have major issues with transitions. She has taken it all in stride this week.

Who knows? This may be the calm before the storm. Next week may be horrible. When all heck breaks loose, like I am sure it eventually will, I will have plenty of time to worry about it then. But for now, I am just going to appreciate the fact that everyone seems happy and content for the moment.

Here we go again.

2012-09-10T10:39:00.002-04:00

This week we start preschool again. I am so excited for it to start because my little girl loves it, but I am also nervous. It will be five mornings a week, and two of those days she will be in preschool without her therapist by her side.

Last year, she went to preschool twice a week, and her ABA therapist went with her. She did really well, but still had some issues communicating. This year she will have some days each week where she will be in class on her own. The teachers at this preschool are wonderful, but I am concerned that without the therapists there to assist in her communication and socialization, she will just play by herself in a corner instead of interacting with the other kids. And since her academics are pretty advanced (thank the Lord), the main purpose of preschool is to get her to interact with "normal" peers. Hopefully she will be able to find some little friends in her class this year.

Within a few weeks of starting school this past year, the teachers and therapists noticed that my daughter and another little girl seemed to gravitate to each other. No one pushed them together, they just sort of found each other. The amazing thing was that the other little girl was on the spectrum also. Neither one of them were outstanding in the social skills arena, so it was great that my daughter could find a friend on her own. It was also nice for me to have coffee with the little girl's mother frequently throughout the school year. It is so rare that I can sit down and talk with another mother who truly gets it. Someone who understands what I mean when I say it has been a "rough morning". Most kids with autism are boys, so it was wonderful to find someone I could relate to. Unfortunately, that little friend and her family have moved across the country, so we get to start all over again this fall.

As kids get older, they become more aware of the differences between the "normal" and "not completely normal" kids in class. When my daughter scripts (says an entire tv episode to herself), doesn't look at them when they talk to her, or wanders off from the group, the other kids will no doubt notice it this year. I pray that they will be kind. Hopefully she will not face any mean girls or rude boys this year. My daughter probably won't even notice if other kids are being mean to her, but if I hear or see it, I will be crushed. When I drop her off at preschool each morning, all I can do is pray that she will find her own way to succeed and hopefully thrive.

The Great Escape

2012-09-06T08:41:00.000-04:00

We have been at the beach this past week. Although the trip has been wonderful and the beach is one of my favorite places in the world, there are some things that make traveling with a child with autism difficult.

One morning, early in the week, we were in the family room of the beach house. I was changing my son's diaper, my husband was straightening up the kitchen, and our daughter was playing on her Ipad. I looked up to put some "eyes on my daughter". I do this very frequently each day to ensure that I know where she is at all times. But this time, when I was finished changing my son's diaper, I looked up, and she was no where to be seen.

My husband and I started to look for her on each floor of the house, but we couldn't find her anywhere. Since the majority of the time she doesn't answer when we call, we couldn't just say her name and wait for her to respond. When I finally reached the ground floor, I saw that the back door by the pool was open. She must have unlocked it and gone out by herself. My heart stopped. I ran out and looked in the pool area, but she wasn't there. I then saw that the side gate was open. I ran out into the yard, and after looking out towards the beach and then frantically calling her name (even though I knew she wouldn't answer) I saw her walking toward the driveway at the front of the house.

When you have a child that is quick, quiet, and has autism, it is extremely difficult to vacation. She just doesn't understand that it is unsafe to unlock the door and leave the house. At home we have special locks, but when we are elsewhere, we have to be extra vigilant.

For those who think that we were probably just not paying attention, you are incorrect. She was there and then she was gone within thirty seconds or less. Since she is very quiet and makes very little noise when she moves, nothing made us even think that she would be attempting to leave. I try to be extra aware of her at all times. Even though we do our best to stay on top of things twenty-four seven, sometimes things just happen. I thank the Lord that we were able to find her quickly. And yes, we did end up driving thirty miles and visiting multiple stores to find childproof door locks for the beach house.

We continue to have sleeping issues. My daughter woke up at four o'clock in the morning while we were on vacation and of course she didn't go back to sleep until that night. No naps were taken, even though I tried. Since we were not at home, and I felt that she would leave her room, and possibly the house since we had not gotten the door locks yet, I had to get up with her for the day. I just knew that after she had been swimming in the pool practically all day, that she would sleep at least through the night if not late the next morning. I should never assume that she will act like I expect her to. She so rarely does.

On a side note, the weighted blanket and her sleep medicine made no difference in her sleeping while on our trip. We will see if the blanket works better when we get home before we totally rule it out

I pray that one day our vacations can be more relaxing. Until then, we will still continue to take vacations just like any other family. Though we have to make some extra provisions, such as getting an extra room so she will be able to sleep by herself (we tried sharing a room with her a few years ago, and my husband and I ended up on air mattresses in the living room), and making sure that one of us has our eyes on her at all times, it is still worthwhile to go on trips as a family. I want her and my son to have the best and most "normal" childhood we can give them. Even if that means that my husband and I need another vacation to recover from our vacation.