Life With A Mental Illness: Kids and Adults

Going To YOUTUBE?!

2016-07-28T15:15:00.001-07:00

I just wanted to make a quick post that I realized since I am not able to write here like I would like, I have a YouTube channel I started in early 2015 just for pregnancy and my life. I have started to make posts about getting Noah diagnosed and even including him in daily vlogs so I wanted to leave my link below for those who wanted to continue to stay up to date with us on our day to day life!!!

Awareness AND acceptance begins with you.

www.youtube.com/tubalreversalmom

I Still Cry

2016-01-25T09:23:00.000-08:00

It's been over 2 years since I wrote my first blog post about the difficult journey it is having a child who has a mental illness AND Autism, and it's been over 4 years since we started this journey with him. I get a lot of feedback on how "strong" I am, how it is so glad it has gotten easier with Noah, and how he is so lucky to have me as a parent. I know all these statements are made with good intentions but every one of them strikes a nerve. As confusing and cliche as it may be, I am the lucky one to have Noah. He is still teaching me about life, love, patience, and compassion every day in some new way. He has forever changed my life and everyone around him. I have yet to meet a teacher, aide, doctor, therapist, family member, or friend who does not end up falling just head over heels in love with him. To know Noah is to love him.

Now let's talk about the not great moments. The moments where I tell my older kids to stay away from him today or to go in their room until I tell them to come out. The moments where I had to almost sit on him to restrain him because he is now 90 lbs and extremely strong. The moments that we cannot go out for a restaurant or go to that store all the kids wanted to go to. The moments where we get unsolicited advice, looks, and judgement from outsiders who just do not know that my son is special needs or just simply do not care. The moments where I just sit and cry because I wanted a different life for him; I saw a different life for him. Sometimes I cry out of sadness and frustration, and I truly do not know why I am crying. I cry because the boy who is melting down or trying to hurt me and his siblings is not the boy who was here 2 seconds before. I cry because when he was a baby I never knew this would be our life. I cry because I am scared. I am scared of many different things: life, his future, my future, my death, and everything in between. Sometimes in life we just do not know what to do so we get scared of the unknown. I fear the unknown with Noah and I cry because sometimes that is the only action I have left that is in my control.

So, I hate to disappoint but I am not strong. I get scared, I cry, and sometimes I wish things were easier. I do not think that makes me wrong or weak... it just makes me human.

"Worst" Part of Having a Mental Illness

2015-01-08T22:41:00.004-08:00

For those without a mental illness, it always intrigues me what they feel would be the worst part of having one. Sometimes it's something silly or mundane, sometimes it's something valid or that I struggle with. I get the question all the time: what do you hate most about being Bipolar?

This answer varies from day to day. A few weeks ago it's that sometimes it's hard to maintain real life friendships. A lot of times it's easier to have online friends or just casual friends in real life. I can't always be that great friend with a great presence and sometimes, I just don't want to talk to you. Other times I may get carried away in a thought or feeling that I don't even feel is carrying me. It's easier to just carry a basic conversation with someone online without being considered "rude". For those who say you can't develop a bond or friendship with someone online ... I kindly disagree.

Six months ago I would have said the worst part is being so apt to becoming obsessed or developing (or feeding) an eating disorder. I don't know if everyone out there with Bipolar is the same but sometimes my mind just gets so wrapped up in one idea it takes off with it. It seems to never last than 6-8 weeks but for my friends and family, those can be some very long weeks. Being so easily swayed to both sides of eating disorders (i.e. starvation to binging) is a hard struggle that is hidden for many that suffer with a mental illness.

TODAY... today the worst part of having a mental illness is the irregular sleep patterns, AKA insomnia. Sometimes the inability to sleep is categorized with only mania. But for some (like myself), at night it is just sometimes so hard to fall asleep. Maybe it's that Noah is now stabilized or that my husband's work schedule is really late but it's not abnormal for me to fall asleep around 3-4 am. I hate it and I even feel guilty the next day. I still wake up on time, get the kids ready for school and off to go (which is super early since Noah's bus now arrives at our house at 6:10 am!) but then I sleep until lunch. I then have just enough time to tidy up the house a bit and check all my groups, pages, vlogs, blogs, smogs (you get the picture). But then I have Noah coming home who then needs a snack, to try to work on his homework then the other kids get home and it's this whirlwind of nonstop. It's been really hard to even get on top of my housework and I know it's because of my sleep schedule. If I was up when the other kids left for school at 8 am and stayed up, that's like 4 hours of cleaning or productivity I am missing out on. So yeah, that sucks.

Insomnia is just a recent development this week so I am taking Tylenol PM and I am trying to limit my electronic use (was successful last night but not tonight) to get to bed before midnight. It's not always a success but regardless, I know I will get through this!

I love all of you out there and I know I haven't blogged in forever so for that, I am so sorry! But the good news is that I am going to try to start orchestrating a few vlogs WITH Noah and maybe my other kids. Since things are settling down again, I want to work my best to really start building LWAMI again.

<3 Awareness begins with you <3

This Is Autism

2013-11-17T19:08:00.002-08:00

I have a 6 year old son named Noah. He was diagnosed with Autism at the age of 4. He is moderate to severe. He is verbal but has limited communication. He also has severe sensory issues along with moderate hypotonia (low muscle tone).

Every time we go to the grocery store, he must have a yogurt or gatorade. We hand it to him, he hugs me and tells me I am "best mommy ever". It doesn't matter if he was having a meltdown a moment before - in that fleeting moment, I just hung the moon. ---- This is autism.

On Christmas morning while my other neurotypical children are ravaging their endless presents, Noah barely opens 2 and is so thrilled and thankful for the 2 he got, he forgets about the other 12 that's sitting there unwrapped. --- This is autism.

It took us years to get Noah to understand manners. He uses every polite word he can even when it's not appropriate. He will tell you 'thank you' when you bump into him sometimes not realizing it's not in appropriate context. But he is proud of himself no matter how 'right' it sounds to everyone else. ----This is autism.

He can't recite the alphabet but can tell you every character and their life role in every super hero show or movie that has ever existed. ---- This is autism.

He can't ride a bike but he can put together a 500-piece puzzle by himself. ---- This is autism.

Noah doesn't understand human emotion and he has limited memory yet will apologize for something he did for weeks straight. ---- This is autism.

You see, there's nothing wrong with the intention of your blog. You are right, us as parents of autistic children sometimes do struggle. I can't tell you the amount of hours and copay spent in a months time. Or the times that I do go for a walk just to regain my sanity. But that moment when I walk in and he's reciting the letters of my keyboard to himself or he tells me 1+1=2 or when he says "I want milk because I am thirsty." is worth it all. We need better services for them YES... we don't need their own city and it's not a national emergency. My son is not severely ill. Actually he hardly ever goes to his PCP for any medical reasons other than to get referrals for his autistic services.

You don't have 3 million children missing. They are real and here... you just aren't listening. Being married with a special needs child is hard but my husband and I have made the choice that we will do it together. If we split, it will have nothing to do with Noah and everything to do with us as a marital couple. I do live moment to moment because I never know what will come next with any of my children. Tomorrow is not guaranteed but right now is. Everything you described was any family with any kind of issue. Life isn't perfect and if I could redo it all... I would do everything exactly the same!

My child lives, we live ... I think you're the one that's merely 'existing'. My son can use the bathroom by himself, eat by himself, and even dress himself. Does he do any of this as well as a typical child his age? Of course not! But you are limiting on what they are capable of because they are capable of so much. I have yet to meet an autistic child who can't feed himself over the age of 4, they aren't physically disabled. I think you're confused on what autism really means.

Light At the End Of the Tunnel!

2013-08-28T16:10:00.001-07:00

I felt now would be the best time to give an update on where we are. I won't go into detail of what we've gone through to get here but just know we are here! :) We have been in the Tampa Bay area for 3 months now.

Altogether as a family we are still adjusting to a new area. Things are different across the board here. The older kids love their new school, we are still in love with our new house and beautiful neighborhood. It's the type where your neighbors wave at you, you can ask to borrow an egg, and all the kids get along great. I have been out of training for some time at my new job and I am doing very well. My husband Lonnie is in his 2nd semester and doing wonderful (finished his last semester with a 3.8 GPA!). There are times where I just want to move back to Jacksonville - partly because things are more comfortable and familiar there, and also because I do miss family and friends. However, when I see how far we've come with Noah's services I know at the end of the day we made the right choice for our family.

Noah has been off of his Seroquel medication for over 2 months now. He is doing surprisingly better. His psychiatrist wanted to make sure it was out of his system before tapering him off of his Depakote as well. His plan is to clean Noah's system of all of his psych meds (excluding Clonidine) then adding just one med in its place at a low dosage that will cater more to his autistic needs/symptoms without him being on an excessive amount. He thinks that the amount and type of meds he was on was actually inducing bipolar symptoms that truly aren't there. He ran medical testing on Noah (blood work, EKG, etc.) and all looks normal so that was good to know. We have ABA therapy starting on November 14th for him. He had his PCP appointment today so he will soon have appointments for speech therapy, OT, PT, and his referrals to the neurologist, geneticist, and Autism Center (he will get a full autism evaluation to find out officially 'how' autistic he is). I love the hospital altogether, everyone there is so awesome, and the services and possibilities seem endless! It also helps having 2 insurance plans for him. They are willing to pay for Depends custom to his size, custom stroller for Noah, and a harness for the car to make riding with him safer. I am also trying to get him set up for his 20 hours of weekly respite hours he qualifies for. I still have some way to go but I do see good things just in sight service-wise.

Noah's school ... now that's a totally different story. I do want to say though that I still believe their school system is better than what he was in. I knew that I wasn't going to walk in and all was going to be how it should. It's a process because it deals with an IEP and a public school system. Got it. HOWEVER, I didn't realize we were going to have so many issues in the beginning over things that in my mind shouldn't matter to them. For example: transportation. In Jacksonville, he was picked up/dropped off in front of our house. It was a special needs bus with 2 bus aides and a seat belt harness. Evidently, that kind of transportation is a commodity here. They set his 'bus stop' 0.7 miles from the house which normally wouldn't be an issue but he gets out later than our other kids so Lonnie would be walking almost a mile one way with all 3 of our children, one being our son with Autism who has a tendency to dart off (has limited boundaries of danger) and low muscle tone who has a note from his previous neurologist stating he shouldn't be required to walk more than 100 ft at once. Then I find out it's not a special transportation bus, he will be placed on a mainstream bus with only 1 aide and no harness. I have 3 concerns: he will hurt someone else, someone else will hurt him, or that he will be bullied. Needless to say, Noah has yet to ride the bus and it is eating up our gas like crazy.

The school placed him in a mainstream school in an EBD (emotional/behavior delayed) self-contained classroom. Same thing he had before. I was really frustrated but I knew a spot at a local private autistic school wouldn't open up for some time plus I understood that was what was on his IEP from Jacksonville so they had to honor it. I met with the teacher before school started and she agreed he needed to be in an ASD classroom. We have immediately started addressing this issue to get him into an ASD class, correct the transportation issue, and get OT going on the school level. I am hoping to have an IEP meeting by next week. Whether the school board realizes it or not, we will be having one. His teacher did inform me today that it will be quite awhile to get him moved/placed. The best news is that the autism school somehow moved him up the waiting list and he can start November 1st OR earlier if his teacher is willing to work with me since I can't withdraw him officially from school until October 31st. It's an ABA Academy and I am really looking forward to it. Now I won't lie: if they get his IEP going and can me into an exceptional center then I will go for that but that doesn't look like that will happen. And to be honest, I am so tired of fighting for him an education. My insurance and his scholarship will pay for almost all of his tuition to the private school and things just are simpler. I am getting plus some on the services the school would give through the local children's hospital! The staff just seems way more gung-ho to wanting to help Noah!

Well, this is us and how we are doing. I plan to try to do a Wednesday nightly blog to update!

St. Pete ... HERE WE COME!!!

2013-05-30T19:40:00.000-07:00

We're relocating to outside of Tampa! I've been waiting for over a month to post this. I didn't want to give confirmation before it's official. I have a job and a reservation for Noah at a school so I feel it's official. There are many reasons as to why we are making this move (I believe the sheet Lonnie and I made when we were still in the 'deciding process' was 2 pages long). I figured the best way was to compare the areas.

1. Jobs: I started job searching back in February, I applied everywhere I could find which consisted of 4-5 places. Only one called me in for an interview in which a week after my hire date ended. At that point, we had already started making plans to possibly relocate but there wasn't anything but I could apply for anyway.

I applied for 30-40 jobs in the Tampa area; I could have applied for more but I was exhausted from doing the application process repetitively. Also, the calls/e-mails started to roll in. The job selection seemed endless for call center jobs. The best part is that most of them were in the location I was planning on residing.

2. Location/Gas Money: We lived in the area we did because the schools, lower rent, and the crime rate was much lower. However, living in that area meant that any job I got would be in Jacksonville (there were only 2 call centers in our area; I've applied to both numerous times). The distance of driving to Jacksonville combined with the horrible gas mileage of our Explorer resulted in paying an average of $500 a month in gas. Going to the beach from our area was over an hour drive. If we wanted to do the few things Jacksonville had to offer (the zoo, Adventure Landing, Shipwreck Island, or ... well, I think that's it) it was an hour drive also.

Even if most jobs hadn't been in the area we were looking to live, Tampa is only a 20 minute drive. With the jobs being in my area, I'll be paying a 1/4 of what I was before, a monthly saving of $375. The jobs, schools, housing, hospitals, doctors, and services for Noah are all in the same proximity. We're only 15 minutes from the beach, and activities in the Tampa area are less than a 30 minute drive. The activities consist of the zoo, aquarium, Dinosaur World, Celebration Station, Busch Gardens, and Adventure Island. Attractions that are slightly over an hour away or less is Disney World, Sea World, Legoland, Universal Studios, and Islands of Adventure. I'm sure there are more things I haven't discovered yet. I'm constantly learning new things we can do as a family. I love that a lot of them offer annual prices at a very low rate! Fun all year long :)

3. Doctors: I've had to switch the older kids' pediatricians multiple times due to offices not accepting their different insurance plans, location, or a bad quality of doctors. I switched Danielle 4 times in 7 years! The 1st switch was due to the doctor telling me even after Noah's tests/evaluations that there was nothing wrong with him, rather it was my parenting. The 2nd one told me that I couldn't bring Noah to appointments even though I had no child care, the 3rd one I absolutely loved but he was over an hour away so I'd just end up taking her to the ER which seemed pointless and costly. The last one had me wait over 3 hours just so she could be rude to us; I'm a firm believer in bedside manner. I can fake politeness and I believe anyone else especially in the healthcare field should be able to as well. While it wasn't a deal breaker, I knew I wasn't going to keep a rude pediatrician that my children disliked for the rest of their childhood years even if we had stayed.

I haven't been to this new pediatrician's office so I can't vouch on how great it is but I can say that my friend has had this doctor since her children were born (her oldest is 8) and she loves their office. I can say when I called and explained that I had a child who is autistic and bipolar in which they usually have to have separate pediatricians, she explained that they have a pediatrician who specifically deals with special needs only but if they have siblings who are neurotypical, he's willing to take them on as well. The office takes all of my children's separate insurance plans. I did research him and he got 5 stars across the board!

4. Noah: First off, contrary to what some select individuals believe, Noah is the primary reason we're moving. I've heard it said there are plenty of autistic children that thrive in the area. We're not doubting that. I'm sure they have great services for autism. Unfortunately, after 2 years of trying, that is not the experience we have had. Some forget that our son is bipolar and autistic so it's not cut and dry when it comes to services. For everyone thinking I'm moving just to move, be near my BFF, or there are all these services that I just don't utilize or try: just stop! I've researched resources/services until I'm blue in the face. I'm given lies, the run around, and empty promises. I don't feel anyone would be able to find more services than his doctor, case workers, teachers, and his obsessive mother. Noah's case worker flat out said that if they put autism as one of his diagnoses, they will refuse services to him. Yes, the autism diagnosis that is on his medical file. It's upsetting, disrespectful, and frankly hurts my feelings to hear someone say that the reason we can't find services is because we haven't allowed said person who has no connections nor a special needs child to look for services. Not to mention, I've had certain individuals try to help but the services they referred us to a year ago were a dead end. So to pretend like I've ignored these services so I could say "Hey! Let's move to Tampa, they have better services!" is just ludicrous. When I decided to move to Texas, we didn't make up a story, there's no difference here. I certainly wouldn't be throwing my special needs child under the bus to justify it. The private school options there are worse than the public school ones. The autism schools won't accept him due to him primarily being bipolar. To make it worse, what most schools offer is half school/half home school to cut down on costs for parents but even after the scholarship, we'd still have to fork out $3000-$4000 every school year to deal with more issues than we do with the public school system! Maybe, just maybe... both my husband and I are tired of fighting a fight we know we will never win here. I will not allow my son to get less than adequate services for your well being. To sum this all up: I'm not going to allow you to rain on my parade. If you cannot be on board and supportive for something that is better for our family then simply do NOT be in our life.

*School
Last year Noah didn't run into as many issues but he was in an autism-based class. At his IEP last year, they changed his placement to EBD (emotionally/behavior delay). His teacher told me last week he's not EBD though. I had a FISPIT meeting (a meeting we must have before he's approved for any services) in September. I explained Noah had already missed 70% of school from medication changes, behavior, or the teachers constantly calling for early pickup. That's when it was explained the teachers need to go through the proper documenting process for suspension. However, it continued happening. The problem with that is there is no paper trail of his academic problems of staying at school. After he has had 10 suspensions in a school year, they're required by federal law to place him in a more restrictive environment. If this policy had been followed, Noah would have 20+ "suspensions". There are 4 students in Noah's classroom including himself. There is one teacher and 2 aides; Noah usually has an aide/teacher by him but if another student needs help, they can no longer be by him and that's usually when disaster ensues. The area won't provide for one-on-one aides with no exceptions. His teacher informed me that there is no restrictive environment. What that means is that if they had followed proper suspension policy, they would be violating state law more than they already have. His teacher has told me countless times she doesn't know what to do with him and in all her years of teaching she's never had a child this severe. She was actually relying on him being admitted to a residential treatment center which isn't happening. She has just now last month told me that Noah is barely eating his food and refuse to accommodate to a GFCF diet. Their idea of a "cool down" room is a padded room the size of a closet with no window or anything. They have no crisis plan to try to keep him at school. Their Physical/Occupational Therapist observed Noah and agrees he definitely needs OT and PT but they say his IQ (82) is too low to qualify for it. Yes, you read that correctly. My son can't receive needed occupational and physical therapy because his IQ is not high enough. They have a PT/OT (same person) who isn't a part of the school's staff but comes in a few hours a week. Same thing with their therapist except the therapist he was supposed to have back in September has only been to the school twice when Noah was supposed to be receiving counseling/therapy on a weekly basis and he has never seen her. He has never made it past the initial appointment with any therapist ever. He's "seen" approximately 5 therapists. That is 5 chances this area has had to give my son the services he desperately needs but didn't. He also needs ABA therapy but there isn't a provider here that will accept his insurance. They have been promising an in-home behaviorist for over a year now but nothing comes out of it. The only hospital in the area that will accept him is a county-funded one, he went there in September and I refuse to send him there again. They told him that it was a school and if he wasn't good, he'd never see his mommy or daddy anymore. It made him terrified of going back to school, created a huge fear for hospitals which he loved before, and for 2 months following he had massive separation anxiety. We'd have to drive to Tampa anyway the next time he needs an inpatient stay or residential since there's only one residential center in the Jacksonville area which stays full most times.

The new area's public school system has schools that are specifically for special education. They have an entire school that is devoted to EBD (emotional behavior disorder) with an autism class inside so it caters to both needs. They give PT, OT, behavior therapy, counseling, speech, and much more on site without the child having to take off from school to go to other specialists. Their therapists are a part of the staff, not contracted to come in a few hours a week. They will accommodate any diet and even has a dietician on staff. In this new area Noah actually qualifies for 60+ hours of services a week. We will qualify for 20 hours of respite care a week, he has a daycare that only take special needs children (there was no daycare that was even specializing in special needs, they always told me they would "try it out"). The best part is they also have an autism center that is linked to his psychiatrist's office. I am not even technically moved down there yet (we leave tomorrow afternoon) and I already have 3 organizations working with me to get him signed up for all the services he will need. We have 5-6 psychiatrist hospitals to choose from that will take his age range and 4 residential treatment centers. There are literally 20-30 psychiatrists I could go through that accepts his insurance then when my benefits start July 1st with work, it will widen even more. In Jacksonville, I have TWO psychiatrist to choose from. One is by me, the other in Jacksonville.

5. ASHLEY: I'm sure many of you have good friends but I honestly believe she tops any BFF cake. I met Ashley 8 years ago: Dani was a baby and Ashley was a pregnant teen. To pass time of Lonnie's long shifts I created an online teen parenting group. There were 500+ members and Ashley was one of them. We still stayed in contact even after I closed the group constantly chatting and leaning an ear when needed. She was even the first person to know I was pregnant with Noah! A few years later, we finally decided to meet in person. One might think it'd be awkward meeting an online friend but it was natural and easy for us. She was great with Noah and never mentioned his obvious developmental delays. I didn't know it then but that was the start of our growing friendship. She was there through the diagnosing of Noah. She always knew what to say and if she didn't, she said nothing. She'd let me talk endlessly about everything and nothing. She never judged and she became the person I went to because I knew no matter the issue, she'd be there. Last year she drove 4 hours for the kids' birthday party. Noah was at one of his worst moments; he was completely manic, impulsive, and out of control. You couldn't tell from Ashley though. She acted like I do when Noah is having a meltdown: she didn't skip a beat. A lot of people at the party thought she had been around Noah a lot. Nope, this was the first time since he was a baby! For the first time in years, I felt like I had a true friend. She stayed until the party ended and helped me clean up. Since then we have been virtually inseparable. I won't post how much we talk because it's a little embarrassing but let's just say it's a lot. If it wasn't for her, this move wouldn't be possible. I've never had a friend who was so loving, kind, and generous. When my friend Charles died in 2010, I swore I'd never find a friend comparable to him. While I'm not going to compare, I will say sometimes I feel he brought us closer to say "Stephanie, you deserve someone to trust in again".

Raising A Special Needs Child

2013-05-10T21:53:00.003-07:00

This was written by my wonderful husband, Lonnie! He wrote it as his first essay in his Composition I class. I had to convince him to let me post it but he finally gave me permission. For others this may not seem like that big of a deal but to me, I had to hold back my tears. I always post about my feelings of raising Noah but Lonnie never does. So for me to read my husband expressing feelings I feel is incredible. I feel we make up a great team <3

One may have come across a screaming child in the store and it appears as if the parent has no clue what is going on. This happens frequently: a child is screaming, biting their parent or even blurting foul language. This child may appear perfectly normal on first glance. One could assume the parents are neglectful, embarrassed, or even afraid to discipline their child in front of viewing eyes. I tend to wonder what others say about me as I walk through the aisles acquiring food for the following week. The only difference my child has from the others is that he is not using his inside voice. Instead my son is yelling as he communicates to me from a foot away. As some might view this as a struggle, this is simply my normal daily life! I’ve learned to love regardless of the violent outbursts, sleepless nights, offensive language, spitting, and psychotic symptoms. It is almost as if one would question my parenting skills. Unfortunately for me, this is the judgment I have to endure on a daily basis.

The reason it is difficult to observe disruptive behavior from a young child is mostly due to awareness. I’ve realized that over the years of parenting experience is that we rarely think about what may be occurring in others’ lives and focus more on what we are accustomed to in society. One could assume that there are plenty of incidents of children behaving badly due to irresponsible parenting and no accountability for their actions. We observe this every day and it almost becomes second nature. However, the thing we fail to realize is that the stereotype is so common that we are not willing to open our minds to the possibility that it may not be the child nor the parent’s fault but simply a genetic flaw. A missing chromosome does wonders to the mind and body, and it happens more than most realize. As awareness progresses through technology and social media, we slowly piece together the puzzle to the overall idea. This idea being that after the dust settles from the obstacles that blind us, we start to realize that the stigma has always been there and it’s easily interpreted.

When you think of special needs the first thing you may think of is indifference. I have experienced others who have referred to special needs as uneducated individuals who are incapable of accomplishing daily activities without the support of others. This is unfortunately the sad truth you will see every day: the value of oneself based on a label. What we do not understand is that there are a wide range of diagnoses to be wedged into this mild learning. The great thing about the mind is when something is missing another counterpart is amplified. The brain uses its strong points to protect its weaknesses, and then a new way of thought is developed. My child has the ability to imagine sequences through objects, has the understanding of patterns in which his creative mind allows him to build replicas of what he has seen, and the ability to memorize a multitude of key characteristics in a fictional superhero and relay it repetitively. My son, however, does not acquire the ability to tie his shoes regardless of how many times he does it, facilitate in a group of children larger than five, nor can he communicate in a level equivalent to his age. These challenges may not be the same challenges another parent may face; however, we all have challenges in our lives, and we all learn how to improve our way of life through overcoming these challenges.

My challenge is rather simple although it is often followed by others expressing their condolences and sympathy. My challenge is to ensure my child lives a full and happy life without limitations due to his disabilities, without struggles that can be prevented with the use of knowledge and understanding, and without fear of discrimination. Every day is a research paper for me and finding out more information to make it easier on my child to experience a typical childhood of laughter and playfulness. Whether it is finding schools that understand how to diffuse his disruptive and aggressive emotions without interrupting his academic progress, locating a dietary plan that supplements his needs to function calmly without unnecessary additives, or going to endless amounts of doctor and therapy appointments, every day is a challenge. Raising a special needs child is all about knowing you can make a difference in a child’s life out of respect, unconditional love, and patience. Perhaps my challenges are no different from the next parent’s challenges; perhaps it is possible we are just looking at it from a different angle.

Our lives consist of factual information and what we believe to be true. These two aspects can conflict with each other which can make it difficult to relate to another who might not be in the same situation as you. As life progresses what I have written will become clearer and the awareness will continue to expand throughout technology and the world. The information will be more relevant and accessible, perhaps even taught in local schools around the United States. The outcome will be beneficial and stigma will hopefully be erased. A parent should be able to go into a public setting with their special needs child and not have to worry about the judgment others are passing for special needs is just simply that: someone special to you. Instead of automatically criticizing or judging the parent, make the decision that will help end the negativity which stigma brings. The next time you go into a store and see a screaming child I hope you think twice before assuming the worst. Perhaps you will see someone like me, you may even have more compassion, or perhaps you will share a smile as you walk by. I will share a smile right back because as I know today is no different as this is my normal daily life raising a special needs child.

Disney World 2013: Day 1

2013-03-03T21:12:00.000-08:00

I was going to wait until I got home to write on how the trip went but I felt take 30-40 minutes a day to account for the day would be great to let others know how our trip is going, the struggles we have, and it will be a nice thing to look back over :)

Overall I count today as a success. Sure things could have went better but they also could have went a lot worse! We had planned a big breakfast for the kids with Mickey shaped pancakes, sausage, bacon, eggs, and orange juice. Lonnie got up super early this morning and did it. It was alright. The food was great but between the kids' excitement and trying to make sure the car was completely loaded and nothing was left behind, it really didn't get eaten that much. Noah had a meltdown literally 2 minutes after being in the car then 5 minutes later he wanted to know if we were at Disney yet, lol. I won't even lie or exaggerate, the car ride was complete HELL. Noah was having meltdowns frequently and often, he didn't want to be touched which was hard considering our entire family was squished in a small car, and literally every 3 minutes he was asking if we were at Disney World. Lonnie Jr decided now would be a good time to start teasing his brother in which Noah punched him. Then Danielle was crying about having to pee every 5 minutes. Thankfully it was only 3.5 hours so it was short lived (would have been 2.5 hours but somehow we got lost once we were inside Disney World). Noah's hardest time today was adjusting to the idea of staying in a hotel and that we weren't living there. The constant meltdown of the day is that we were inside Disney World but we weren't at the parks. He absolutely couldn't get this concept. He kept wanting to ride rides when there was in fact no rides. Once we got inside the hotel and fed the kids lunch, things were much much better. We forced the boys to take a nap and that gave us time to unpack the luggage, groceries, and just relax from the stressful car ride.

Now I had no plans to promote the resort but I would like to say our experience with Disney resorts has been absolutely wonderful. Their customer service before we got there was superb, it got even better once we were there. In checking in, I was stopped by at least 3-4 people asking if they could help. Even though the place was swarmed with 30+ people, I waited NO time to get checked in. It was incredible. When I originally reserved the hotel, I had explained that we had an autistic son and we need a quiet room away from busy/noisy areas, ground floor, water view if available, and an early check in. They accommodated all requests. We had thought about getting the water view pirate-themed rooms when reserving but it was an extra $30 per night. They upgraded us for no cost! Then the room was insanely awesome. Now we both saw photos so you wouldn't think we were as pleased as we were but it was just AWESOME! The beds are pirate ships, the details are insane, our fridge is inside a barrel, our nightstand is a barrel, the floor is planks... I wanted to share photos just because I am that pleased with it.

After the kids woke up, we wanted to go do something but it was 52 degrees with 20 mph winds so even with heated pools and a hot tub, there's just no way we were going to do the pool. Everything else they had to do was outside oriented so we decided that going to the gift shops, grabbing a bite to eat, and playing in the arcade was a great way to spend our first evening! This caused even more problems with Noah because he saw all the Disney-like souvenirs and so forth but no rides so there was a few meltdowns during the course of the evening. The worst was over milk, we regretted leaving his autism cape at home because the looks we were getting but it was okay. I just told myself that I was here to make a vacation for my family not to justify my parenting to complete strangers. He really didn't eat hardly anything. He ate some of our burger, some fries, and the plate of pickles we got for him! However, with Noah I have learned that whenever we have a hard time with him, he makes up for it in someway. We went to probably about 3 gift shops with little to no issues with him! He looked at toys, found things he loved, and we hardly had to hold his hand. He was near breakable things and still, no issue really. We actually had to get onto our older neurotypical children more than we did him. It was so nice. The arcade was fun and overall no complaints. He really wasn't interested in any games (except taking photos with me at the booth! LOL) but he pretended he could play them or he just followed my mom around. He was a joy and he smiled and laughed. That's all I want! He came home and crashed without his nighttime medicine so after my bath I had to wake him up to give him his medicine. Tomorrow is Hollywood Studios. We are hoping the weather has improved where we can maybe come back for an hour or so to use the pool but we don't have any expectations except for our kids especially Noah to have the time of his life :)

Family Vacations

2013-02-28T20:28:00.001-08:00

Being a mother to a disabled child means that sometimes I have to make sacrifices. I knew this when Noah was first diagnosed with Autism and then later Bipolar Disorder. What I did not take into account though is that I wouldn't be the only one making them. I knew Noah would be in Special Education classes the rest of his life in a self-contained classroom; I knew that it's a good possibility that he will have to live with me well past 18 years of age if not the rest of his life; I knew his life would consist of many inpatient psychiatric hospitalizations, and I also knew that all the dreams and hopes I had for him as a toddler were no longer. I dealt with this reality. I never was prepared for the sacrifices my other children would have to make though. They both absolutely love their little brother; there is no doubt about that. I remember when Lonnie Jr was barely 5 and Danielle was 6, we sat them down and tried to explain Noah's disabilities. It was hard for them to understand at such a young age but they all agreed on one thing: Noah is not like other children. We went with that their brother was different and special. They have protected their little brother so many times and sacrificed more than they even realize. Danielle now understands he's autistic and a little bit of what that means but labels don't matter to them, but their fragile brother does. They have taken so much from Noah and never once do they hold it against him. They can't invite friends over out of fear of Noah hurting one of them but that's okay to them, they just lie and say they don't want their friends to stay the night anyway. When Noah was hospitalized for 8 days this past fall, they both cried and constantly asked for him. My daughter slept with his favorite car until he got back and she could give it back to him; my other son drew him probably 50 pictures. A lot of instances where other families can go out, we can't. When we plan a big outing "day", it's always cut short after the first task because Noah gets too stimulated. We once tried to plan a family day to a local water park, the cold water was too much for Noah and we had to go home early.

One might ask: Why in the world would you take all 3 of them to Disney for 5 days then?! I have many answers and many reasons. To get to what inspired this trip: my older kids deserve it! I have great children. Sometimes they're sassy or cranky but most times they are precious, enduring, loving, sweet, and giving. They are absolutely everything I would want in a child. They need to be kids, they need to remember what it's like to not be 7 and 8 going on 30. And as much as those children need it so do my husband and I. This year has been difficult and trying. Our 9th anniversary was in February. Instead of going to Universal Studios for an extended weekend, we wanted to do this instead. Now we did think about leaving Noah at home, I could get my mom to watch him easily. That's what we always have done anyway. But I felt if there was any place that we could take Noah and maybe possibly feel like a family it is Disney World. Then there was the point that Noah is autistic, he is bipolar - all of these things are true but he's still a child. He is a child who deserves a vacation, 5 days where he can feel normal and be like every other kid out in this world. It's where dreams come true after all, isn't it?

My entire point of this blog entry wasn't to justify to others our vacation decision. I just know that when I was doing the extensive research whether to take Noah with us or not, there were so many blogs and articles that helped me immensely. I wanted to help out, give back, and maybe help another parent who might be considering taking their special needs child to the land of dreams! I plan to keep an updated daily blog (it might not all be posted until I get back though) so its a better insight. Below are some pictures of things we did to prepare for this trip!

The first thing we are doing to make our trip a little bit easier and accessible to Noah is getting a single or double stroller (we have yet to 100% decide on which). He has low muscle tone (hypotonia) to start with so we knew we'd either need a wheelchair or stroller. We were going to opt for the wheelchair because it's cheaper ($40 for all 4 days at the park) but he does have a tendency to just get up and dart for no reason. Disney World would give him plenty of reasons so we felt that was a bad idea so a stroller where we could strap him in was the more logical (and safer) option. Due to him being the size of a 7 year old, it made buying a stroller just out of our price range. We got a letter from his neurologist (although from what I understand it isn't required) so we can use his stroller as a wheelchair wherever wheelchairs are allowed. We think this will help his hypotonia but also help the trip and long lines run smoother. We are of course going to try to get the Guest Assistance Card. I keep getting conflicting information if you need a letter from your doctor or not. I had an issue with getting that so I am just bringing a letter from his psychiatrist that lists his diagnoses and hope that's enough IF they need it. I will keep you updated if it was needed or not. And for those who aren't aware what the GAC is, it allows you alternate waiting areas (shaded, away from crowds, etc.) or to enter through the Fast Pass or Handicapped entrance. Disney doesn't advertise that it helps cut your wait down but from what everyone says it does. It also gives you seating at the front of the shows if available. Overall, it is used to alert the cast members that a person has a disability that isn't visible. We are also bringing my mother with us to help with Noah if he is having a meltdown, isn't wanting to ride a ride the rest of the family is, or needs to be taken back to the hotel. We figured a ratio of one adult to every child was a good one!

We are staying on Disney property. There are so many perks to it that it was worth the extra $15 (yes, I said $15) than when we would stay off property thanks to a Florida resident special Disney is currently running. Not to mention that you get free parking at the parks as a perk so let's deduct that to THREE dollars. Our hotel room is decked out in a pirate theme with 6 heated pools where the main pool has 3 water slides for the kids and a shipwreck water park for the children under 4 ft (Noah is just under 4 ft without shoes!). They also provide free transportation every 20-30 to/from the resort if needed so if my mother does need to take Noah back, she can. It's of course a close commute for us even by car so we can take a midday break if needed. They also offer "extra magic hours" that the park is solely open to resort guests only. So on the days the park opens early we can take the kids and enjoy the busier rides without the extra wait and on the days the park is open late Lonnie and I can go back to the park after the kids are in bed to enjoy some "us" time. For us, that $3 extra a night is worth it!

Now one of our big concerns was what happens when we are in public: the stares, comments, and questions. A 2 hour trip to the grocery store is fine to endure this but 5 days back to back I knew would get annoying and we didn't want Noah to be treated unfairly because people simply didn't know. Now the questions I don't mind so much (if they're in good taste) but the unnecessary, ignorant comments and stares would definitely put a damper on our family vacation. We wanted something he could wear saying something about autism but in a cute way. My close, awesome friend from Oklahoma made him a cape that says "I Have Autism ... What Is Your Superpower?" It is adorable and I will forever be grateful to her for that thought of kindness and generosity. She also made a flag we could put on the stroller. We were also very concerned about Noah getting lost. Actually, that was a huge fear of mine. We decided to make a name tag he could wear that had information about him being autistic, what it meant, and all of our contact numbers in the event he got lost or ran off. I even added a little Mickey Mouse on it to "Disney" it up. (My husband also drew a Mickey Mouse head with puzzle pieces on the cape ;))

When packing for the trip we had to address all of his needs: his inability to wait, sensory problems, his diet and selective taste in food. I knew we needed something to occupy him when we did have to wait for a long time (the GAC doesn't help you with meeting the characters which is one of the things he's most excited about). I decided the best plan was to bring his Leap Pad equipped with headphones and his Scooby Doo game. We were bringing this anyway for the car ride but it will be recycled in the park as well. We also knew some of the shows, parades, and attractions would be too noisy for him but we still wanted him to be able to enjoy them so we invested in some soft ear plugs for him. Even my older kids want to use them to on the rides that are too loud! I had to get him sunglasses as well since the sun is too bright. We also packed his blankie he uses to chew on and then one to cover up with in case he wants to take a nap (which we are hoping on!). We are making sure to bring his favorite snacks if it doesn't have to be refrigerated and some which do since there's a fridge in the room. I figure at least that way he will be able to eat when we go back if he doesn't eat very much at the park!

Well, that is it so far. I am excited and nervous. I really hope the kids have lots of fun and this is a positive experience.

Judgement

2012-09-08T22:37:00.001-07:00

Judgement and criticism is something that all parents of special needs children have to face at one time or another. I have been dealing with it from the time my oldest child who is biracial was born and it certainly didn't end when Noah arrived. Whether it was judgement in whispers speculating exactly why he wasn't progressing in development, unwanted advice on how I could discipline him so much better to "beat" those tantrums out of him, or that I possibly couldn't be putting my son on medication to be helping him, I just must not be able to handle my child. It still shocks me though when a complete stranger makes a judgement about my life and caring for my son when he or she has no possible idea what I go through on a daily basis.

Yesterday as I was handing Noah's bedtime medicine to Lonnie (he will usually only take it from him), I realized he only had one pill of Zyprexa left. He takes two pills so I knew I'd have to pick up the prescription from the pharmacy today for tonight's dosage. I didn't think this would be a huge deal as the prescription was called in the last week of August from his doctor's office since they increased his dosage from 5 mg to 10 mg and no problems were mentioned. In the commotion of rearranging our house to make the play room and office, the website, and dealing with one of Noah's "up" days, I forgot! I remembered an hour before our usual pharmacy closed so I called them, they said it wasn't a problem, and they could even transfer to a closer pharmacy so I wouldn't have to drive as far. This sounded wonderful and it'd be ready 10 minutes before they closed. Well, what they didn't check was the hours of operation for the "closer" pharmacy. They were already closed for the day so I had to drive 10 miles away to the 24 hour pharmacy. I was upset by this but Noah had only had half of his Zyprexa dosage and he needed that other pill. I get there only to be informed that Medicaid has denied his new dosage due to his young age. I am a little frustrated but after almost a year dealing with prescriptions and Medicaid, I'm not surprised at all by this news. She explains that Medicaid will need additional documentation from the doctor's office before they can approve it. I say, "That's okay. I completely understand and his psychiatrist's office will have no problem sending that over. After all, Medicaid isn't the one that has to live with him." The pharmacy technician's response? "Yeah, that's how a lot of parents feel when they can't handle their children." Now if I heard any other mother tell me this scenario I'd probably say a million things on what I would've said, however, you never know what you will say when someone is blatantly calling you a horrible parent. I politely smiled, looked her dead in the eye, and asked her if she could please ask the pharmacist if I could have an emergency supply to last me until Monday. After I drove away, I had thought of many things I wanted to say to her. There's some ugly things I wanted to say for questioning my parenting and my choices for my son's mental health but mainly I wanted to scream, "Are you aware that his Zyprexa is the only thing that stands between him and a psychiatric hospital?!" It isn't easy being a parent of any child that has a disability but being a parent to a bipolar and autistic 5 year old is sometimes beyond challenging to say the least. Sometimes we have to make decisions that aren't easy, they're not ones we want to make, but no one said being a parent was a bed of roses.

Judgement comes in all forms and while we all have opinions, I just feel some opinions should be kept to themselves. I expect the criticism coming from random people who have no education in mental illness or autism but more times than not, the most criticism and judgement come from medical professionals or those educated as such. I recall a time I had to take Noah into the ER to have his Depakote levels tested in which I had to defend my son's psychiatrist's decision to have him on a mood stabilizer. To me, that is absolutely absurd, unprofessional, and completely uncalled for. No parent should have to defend a treatment plan agreed upon by both parents, a psychiatrist, a therapist, and a case worker to another medical professional just because they're not knowledgeable enough in that specialty to know that it is in fact in the child's best interest.

This is a perfect example on what this website is all about: awareness and education! We can no longer be quiet about these issues. People need to realize that pediatric mental illness is real and it does happen. Don't judge. Educate yourself.

Follow us on FB: www.facebook.com/lwamikids

www.lwamikids.org

<3 Awareness begins with you <3

Outpatient Services

2012-09-04T18:56:00.003-07:00

I have mixed feelings tonight. First of all, I am super excited about the progress this blog has taken. I purchased the domain and hosting account tonight. A friend's husband has been a godsend by taking on helping me so I couldn't have done it without him. I finally feel like this is really happening and it's a wonderful feeling. But then I guess that's the part which is making the other part of me sad. I want to be able to be at home, help others that are going through similar situations, raise awareness, and be there for Noah like I need to be! I love my current job, I really do. I have a great manager and a team full of wonderful coworkers who I've grown very close to; however, all day every day I just want to be home. I don't want to cringe every time I have an appointment for Noah that doesn't coincide with my work schedule. I also feel it's unfair to my employer that I can't give my full heart to the job when my entire heart is stuck at home! I am going to press through and try to get everything completely up and running where I can be at home by Christmas time. What a Christmas gift to my family that would be!

We have been trying to get Noah into outpatient or in-home therapy since November 2011. We finally got a call from our targeted case worker advising us of an appointment on Friday! So, that is such a great step in the right direction for us. We are also having an in-home behaviorist which will come out to the house on a weekly basis to help with Noah. With these services that we've fought for so long for, it is a great feeling to know they are finally coming. We are also doing it because his insurance wants to see as many outpatient services as possible before doing the residential treatment center. So, we are doing it to know that if we do need to exercise that resource in the future, our chances having it improved are much greater!

This is a shorter entry but of course, I need to get back to the web design of everything! We will be switching blogging origins soon!

If you want to follow us on FB: www.facebook.com/lwamikids

The Introduction: A Glimpse Into Our World

2012-09-03T21:38:00.000-07:00

Most parents of special needs children say that they knew something was different or "off" from the moment he or she was born; however, we didn't. We had been married for going on 4 years and had 2 neurotypical children: our daughter Danielle who had just turned 3 and our son Lonnie Jr was turning 2 in just a few short months. Noah was by all means a surprise but a very welcomed child. Just like with his siblings, my pregnancy came and went with no incident. He came into this world like my other two children. I remember holding him with tears of joy; he was absolutely precious. We just had no idea what was in store for us in the following years.

Nothing prepares you for it. It's commonly said that there is no parenting handbook. Well, I definitely know there is no handbook or even a chapter on preparation of a disabled child. We definitely weren't prepared; it caught us by absolute surprise. Noah was a good infant. He was sweet, smiled, and he laughed at everything. Compared to other children, he did cry more and his choice of foods was very picky but we weren't really concerned as all children are different. We noticed that he couldn't sit up or roll over by 6 months old. He didn't start crawling until right before his 1st birthday. One might think that this would’ve been a red flag but it wasn't. When both parents work full-time plus 2 toddlers it's very easy to miss. It wasn't until he was approaching 19 months that there was concern. We were referred to Early Steps. I don't regret a lot of my decisions throughout Noah's life but I regret this one thoroughly. When they asked me questions they couldn't possibly know about him, I lied. I love my son dearly but in my mind I thought his lack of development was somehow my fault. I had worked too much, too hard, and I hadn't noticed the big signs any other parent would have. He was 20 months old and he wasn't walking, pulling himself on furniture, talking at all, or socializing with other peers on an appropriate age level. He had said a few words around 15 months: mama, dada, bye but somehow he just stopped saying them. I wasn't aware of signs of autism. Again, I was just busy. He began pulling himself on furniture a few months later and then around his 2nd birthday he was full-fledged walking. We were relieved and chalked it up to an extremely late walker and talker. His speech actually didn't even begin until he was 3 and then it was gibberish. Even though his speech wasn't developed until then, shortly after his 2nd birthday we noticed that the child we knew before wasn't the child we had now. It was literally like a switch went off in him.

Throughout our journey with Noah, many opinionated individuals have labeled him with hyperactivity. Now let me clarify something: our daughter has ADHD and our other son has ADD. We are very aware of how hyperactivity and attention deficit disorders present. He’d run and scream through the house for no reason all day long. He’d purposely bang his head on walls or bite himself. He was very silly/goofy beyond any 2 year old we had encountered. We began to adjust our lives to having this hyperactive child. Sound, touch, and large crowds seemed to make things worse for him. He couldn't talk or express himself so he’d either try to hurt himself, others, or just scream for no apparent reason. From the outside it definitely looked like a misbehaving child but as it continued and we tried every discipline method in the book, it became clear that what was happening was completely beyond Noah's control. Just as we thought age 2 was such a rough year for him and us, year 3 was our breaking point.

By this time, we were accustomed to his manic-like symptoms. However, age 3 brought new issues we just were not prepared for at all. He was trying to talk but they were 30 words or less and we couldn't understand half of them. He would be sitting down calm, playing with his blocks or cars then all of a sudden he’d get up and start yelling/screaming throughout the house and it’d take literally restraining him for him to stop. We also found his playing hadn't really advanced. He was still playing with the same toys: blocks and cars by lining them up. He never wanted to play with anyone but himself and when we tried to encourage it, someone usually got hurt. He had already been kicked out of two daycares and was at his third. He kept regressing with potty training which we later discovered would be a pattern for him in the coming years. When it was happening though, it was very upsetting. We just wanted our son to progress through toddler life like our other children did. We were in complete and utter denial that our child wasn’t like others. He was very morbid, obsessed with causing pain and death. He was coming up with clever ways to hurt himself and others. He even tried to jump out of the car a few times. I had been a stay at home mom for a year; it was hard and a lot of work but denial has no bounds. The daycare director forever changed our life. She called me in one day and explained they cared for Noah deeply but he could no longer be there as he was now a liability but she urged for me to have him evaluated through CARDS. I was a psychology major so I was educated enough to know what that meant. Education prepares you for many facets of life but in no way does it prepare you for this kind of decision as a parent. I wanted to call them but I didn't. I cried and researched a lot. Everywhere I looked, he met most symptoms of autism but not all. When I’d read about a child with bipolar it always fit Noah exactly. But that was something I just didn't want to face. I would’ve rather had an autistic child then a bipolar one. It never occurred to me that he could possibly be both. My mother is bipolar and I was not yet diagnosed with bipolar so it was a very sensitive issue for me. Regardless, what he did or didn't have there was something wrong and we needed help for him. In March 2011, I made the first step in this process. I called a recommended CARD specialist and made an appointment. I was FLOORED when they told me there was a 6-24 month wait. My son would be almost 6 by that time. I made the appointment anyway; they sent me the booklet of paperwork to fill out. I just couldn't stop there though. So, I became the diligent mother and researched 6-8 hours some days. I found that he’d probably qualify for services through the school district for Pre-K the following year. I started that long process and they tested him that May. They found him below the 1 percentile in development and in need of speech therapy. But before we even made it to the IEP meeting in June, we met a huge crisis: Noah had begun to present with symptoms of psychosis. He was paranoid. My husband would put him to bed by rubbing his hair and Noah would yell for him to stop hurting him. I’d walk him to the car and he’d yell at me to stop doing this to him and that I’m always trying to hurt him. We’d be in the store when Noah would start rapidly shaking his head left to right and yell for everyone to stop looking and talking to him. It was very concerning. It was also concerning how he’d argue with himself very violently. It was where he’d argue with “the bad guys” as he called them. It wasn't until my husband told me Noah killed a kitten that I was officially beyond worried. The details of how the kitten was killed are unknown. Noah ran in the room, locked the door and when my husband finally got it unlocked, the kitten was dead. People have their opinions on what it means that he killed an animal at age 3. We weren’t as concerned with the actions as we were with the following reaction. He showed absolute no remorse and was actually proud that he did it. Then the next day, he had completely forgotten he did it. That is the day I started to make calls to a psychiatrist. Regardless of how I felt about my son having or not having a mental illness, his wellbeing meant more to me than my own issues. You’d think everything I have said so far would make it where any psychiatrist would be jumping to see him. I made probably 10-15 calls. Some wouldn't take his insurance (we finally had him on state insurance for children with special needs), half of the others wanted him to see the therapist before the psychiatrist which was a 2-3 month wait, and the others were sure I was making it up. He saw an outpatient therapist for 2 months which diagnosed him with sensory processing disorder due to his age, it was a moot point. His psychotic symptoms were progressively getting worse and his sleeping habits were bordering dangerous. It’d take us 2-3 hours to put him to bed and then he'd wake up 5-6 times. It came to a point where we’d have to take shifts or barricade our door shut so he couldn't get out. Even during the day he had escaping issues. We always had to keep the door chain locked as he’d be gone in 5 seconds flat so at night caution had to be used. We were relieved when the CARDS specialist’s office called us. We were a little taken back that we had an appointment in just 4 short months! However, it was with their neurologist and not their developmental pediatrician that usually handles children alleged to be on the spectrum. But we didn't care, a specialist was going to see our son that year and we were stoked! However, good days are usually followed by horrible days. In July 2011, things came to a complete stop for us. We had gone 3 days with Noah sleeping a total of 6 hour. Then I saw Noah holding a butter knife to my 6 year old's neck telling her he was going to slice her head off. After much debate, we came to the conclusion that for the safety of the family the best thing to do was to admit him to the local children's hospital. I thought we’d get help. However, all we got was 4 very long days and a couple of routine blood tests. No EEG, no MRI, no genetic testing, and they sent us home pretty much saying just to deal with it. For reasons that I will explain on a later entry, I decided to seek out professional help for myself so I could be the strongest and best mother I could be to Noah. I was diagnosed with Bipolar I and generalized anxiety. Shortly after, he started school in August 2011 which did help to have teachers more experienced in special needs and the speech therapy was incredible! For the first time ever, we could clearly understand what he was saying! Those days seem like such a long time away. It was only a year ago but this last year has been so difficult and so emotional.

I have learned to stop saying, “This is the worst Noah can get.” Sure enough, a year following, he will be worse. We just take it day by day. Celebrating our great days and pushing through our ‘not so great’ days. With no help from any outside sources, a CARDS appointment still not until November, and constant calls from Noah’s school, I was desperate. I did something that I thought would not work. I took my son into the intake day at a local community mental health center. I circled the ‘homicidal and suicidal’ as he was qualified since he was a harm to himself and others. I had an appointment with the child nurse practitioner at 1 pm that same day (there’s usually a 4-6 week wait). Finally someone took me seriously. We got started on a path of medicine. I won’t list his medication trials but they tried non-invasive meds like Clonidine that normally work for young ADHD children and it just wasn’t enough. His psychosis was getting worse but now thanks to speech therapy Noah could talk and tell her about the bad guys that tell him to hurt his siblings and even himself. We finally got some diagnoses for Noah: PDD-NOS (autism), Mood Disorder-NOS, and ADHD. Shortly after, Noah’s appointment with CARDS had come. By this time, I had given up the thought of my son being autistic. The neurologist even noted he presents with some PDD symptoms but that the label would probably fall off in a few months. She was more concerned with the hallucinations he was having during the 4 hour evaluation. The final diagnosis was rapid mood changes with possible underlying psychosis, hypotonia (low muscle tone), and articulation disorder. She ordered genetic and Fragile-X testing, a MRI, and EEG which we are still going through the process of getting some of that done. The genetic test came back abnormal. A geneticist in August of this year interpreted the results as confirming things we already knew (autism, hypotonia, and developmental delay). We also got assigned a target case worker which helped us get into their child psychiatrist so we could have someone with a better expertise help our son. No offense to her, she was wonderful but the problems we were having were intense and I knew that the normal meds that were supposed to help him weren’t and we were about to enter some complicated medication changes. We also got approved for SSI-Disability for him in only 6 weeks! They also dropped his Developmentally Delayed label at school and updated it to EB/D for this year for Kindergarten. It seems just when we think he’s stabilizing on meds, his mania breaks through. The psychiatrist told us early on that he thought Noah was bipolar but he just wasn’t comfortable diagnosing him with that which we understood. After 2 months of solid mania, hypersexuality, and the closest we have ever came to Noah being baker-acted (Florida’s label of involuntarily hospitalization), his psychiatrist has now given him the final diagnosis of autism, Bipolar I, and ADHD. He did explain that due to some symptoms that are too strong to discard (sensory, developmental delay, OCD issues, how socially inappropriate he is, and Noah's lack of emotion) he is leaving his autism diagnosis on long term if not permanently. He is going through the tests to rule out any other issues that sometimes occur with autism (genetic disorders and such) but to finally have something solid is like feeling you’re on top of the world. This last mania lasted so long and it took him taking his med dosage x4 to bring him down. He’s stabilizing finally and I finally feel like it’s something solid. But I don’t hold my breath; I take it one day at a time. I have been working for the last 5 months but every day I feel that they are going to fire me at any moment because if I get that call for my son, I am leaving. He is my everything and worth more to me than a paycheck. The entire reason for me starting this blog is to supplement income where I can stay at home with him so if you see links for donation, I am not money hungry. I am simply trying to make ends meet while being the best mother I can be (plus 50% of it goes to NAMI).

I talked to my stepmom last night and I wanted to end this blog entry with my response. She asked me how my other kids handle this situation with Noah:

They deal but they've been dealing this since they were real little so it's just normal to them that their little brother isn't normal. But sometimes I see them acting way above their age, trying to calm Noah down themselves, rubbing his head, or trying to distract him from what he's currently raging about. If he hurts them, they just say that they know he doesn't mean it. While I LOVE that I have beautiful, generous, and loving children, it's not their job to be 6 and 8 going on 30. It's their job to be children so I have to find the balance of caring for my disabled child but also giving the life that my other children deserve. No one ever told me how to deal with this or that it would even be a possibility. As a young woman, it's a lot to take in sometimes but I feel like well, what choice do I have? I am here; Noah didn't ask to be this way. He's just here and really confused that everyone doesn't see the world in the way he does.

If you'd like to follow me on FB: www.facebook.com/lwamikids