So Gabriel has made $682 so far which is amazing but we still have a ways to go! So please keep RT the Link sharing on Facebook and passing around the flyers!
A short message, If your child has any delay, if you think anything might be off ever, always ask questions and push forward. Being in denial or ignoring symptoms for some parents does not make your child get better and getting a diagnosis only gives you a better set of tools to fight your battle. Don't be afraid, and don't think that if you avoid the diagnosis longer it will make it less real. If there is something there, it will be there regardless of whether you are aware of it's name or not. So please for your child if you have any suspicion ask and pursue, better to be wrong than to waste precious time that your child could be receiving help.
I'll try to keep it a bit light and not too too long because I tend to ramble. If I do please forgive me, along with my spelling, grammar mistakes, and lack of journalistic skill.
So Gabe was born in February during a snow storm six days shy of my first son's first birthday. (yes I know Irish twins, I'm mad straight out of the gate.) So in the hospital was when I had my first concerns with Gabriel because he cried, ALOT. He wouldn't latch to feed and he wouldn't bottle feed either, he needed to be held around the clock, even when I would fall asleep he needed to be in my arms because, the moment we placed this sleeping bundle in the bassinet, BAM instant cries. So we brought him home to meet big brother who loved him pieces as much as any one year old could. Then within the first month I noticed something different about Gabe when he ate, when he swung, when he just sat. He rolled his foot in a circle, just swirling it. Almost from the first few days of life. This I found a bit odd, seems like nothing but from my experience newborns don't really do anything, do they?
Then around the same time the vomiting started. After every feeding, about 10-20 minutes after each one it was like the exorcist. A crying fit followed projectile vomiting. So we whisked him off to the doctor and got the " sounds like reflux, try this" which was the standard dose of zantac given to babies. No change. Back to the doctor, they ruled out a major GI issue like Pyloric Stenosis early, so thankfully we didn't worry about that but why couldn't our baby keep any thing down? So we repeated the step above 3 times, each time uping the zantac higher and finally a little relief that lasted maybe 2 weeks then back to square one. Then the Doctor busted out the big guns and Gabriel was placed on Prilosec Supspension and switched completely to formula with two scoops of cereal in it to keep it down. This seemed to be the most effective.
During this time Gabriel also required so much physical attention, swinging, carrying around, bouncing literally ALL DAY. Placing him down in his bouncer to do the dishes was a huge no no in Gabriel's rule book. This became exhausting because even when you did give him your undivided attention he would still be crying most of the time. Now don't get me wrong, I don't want you to think that I figured a clean and fed baby should be happy and completely content, but he couldn't possibly need the endless hours of attention either! But there was no line in the sand at this time for Gabriel and it was making it difficult to delegate my Oldest, my Husband, and Home because the crying never ended.
So I did what any mom does hoping maybe the answer will be different for her and asked his Dr. and my answer is what I expected. COLIC. My heart sank, I am supposed to wait for him to grow out of this? I'm going to lose all my hair!
So the months went on and he still vomited on occasion, the foot spinning was always there, and then as he began to learn to sit upright and hold his head up I noticed something new. He would just shake his head back and forth as if saying no, but he would do it so fast sometimes it would make you dizzy just to watch!
At this point he was old enough to start babbling too but the only noise that seemed to come from my youngest son was a cry and the occasional coo. So off to the Doctor we went! and I asked everything I could and everything seemed to have an explanation but they never did sit right with me. Like the motor ticks were just something all children might just find enjoyable and repeat the action over and over. Not a tick, necessarily. The vomiting reflux, and the late speech development, just a late bloomer! At this point I had been taking every thing above I just mentioned to you and typing it into Google and looking for a better fit, something that made sense of all his symptoms. The most common hit was Sensory Processing Disorder and Autism.
The first time I saw that word, in the search for answers for my son, I told no one. I just read silently to myself one day and cleared my history, as if I left it there it would crawl out of the computer and into my mind and heart and haunt me. Or perhaps it was my mother's intuition having a moment of denial. Who knows but I took that advice from the Doctor and just watched my son even more carefully from now on. So Gabriel went on to hit all his Motor Milestones, he walked right on time. But Still the Crying. Any time of day in the middle of playing with a toy, appearing perfectly fine, then all of a sudden tears. A waterfall of tears! And his Temper! My goodness he had rightfully so earned the nickname Gabezilla in our house from the Meltdowns he would have. He would just walk into a room and Cry, THROW himself back and Scream Cry, Kick. Whatever he felt in the mood for. Only Gabriel really knows the reasons for his Meltdowns I suppose, because still at 12-16 months he did not say any words. He only used Jargon. On top of this at 12 months when we went to switch from standard " milk BASED" ( that is important!) formula to whole milk and something in Gabe changed, After every glass of milk a full blown out of this world melt down, sometimes lasting for over an hour and a half of writhing and screaming on the floor. He truly appeared in pain. He would be up till sometimes 1 in the morning doing this. So there it was again that mommy intuition kicking in, something that said, Try Lactose free milk. Within one night it was an amazing whole new night time.
Fast forward to about 18 months and Gabe has picked up about 15 words, " 'what is it?' 'what are we gunna do?' and 'uh-oh!' " are his favorites but he doesn't label objects yet. Then one day Big Brother was sick so we all had to travel to the Doctor's office and see the Dr. on call. There Gabe is bouncing around the room like he always is, never stopping always going and Jargoning, talking to himself in his little language, at the end of the appointment the doctor asks me how old Gabriel was and how many words he spoke. After hearing that Gabriel was about 5 months shy of his second birthday and had only about 15-20 words in vocabulary we were referred to Early Intervention. DEEP BREATH. This was the beginning of a long road to answers for our family, we hoped. If your not familiar with Early Intervention, he needed a 30% delay in three out of seven areas in order to qualify for services. I was nervous that Gabriel would fall in that grey area in-between being delayed in only two areas or only by 20% or something and missing out on crucial therapy, and I would be devastated. So I called and they came and did their evaluation of him and they saw the scared, crying, clinging Gabriel that I had come to know and saw very few words that day. When it was over he had only passed in his age group in two areas and his gross motor was advanced a few months. All his speech and social areas were so delayed the worst being his receptive speech at that of and 8 month old. Gabriel was 19 months old, he was ELEVEN MONTHS BEHIND. I was floored. I knew something was off but I had no Idea he was this far behind. So my first reaction was, LETS GETS STARTED. It took a month to set up services and get him going. But our service Coordinator is amazing. Surprisingly he warmed up to her in a few weeks and his social skills got better and better and with it some small communication advancements. Eventually Gabriel required the services of an Occupational Therapist as well because he just loves to be squished and jump and roll and swing and sometimes, its just dangerous. We needed him to take all that energy he had and use it positively and correctly. We at this point had started discussing routine hearing and Neurological exams to rule out anything else. He passed the hearing with flying colors and we had to wait a few months for the Neurologist. While we waited, Gabe's social interactions had gotten better. He had gained some small speech and finally pointing, we began to discuss the possibility of Sensory Processing Disorder. The OT brought in the check list and compared it to mine and Gabe nailed so many markers. I was sure I had my answer. So when the Neurologist appointment came I wrote down all my questions but when I got there all I could do was listen and tell her his history, His Neurologist examined him and at the end asked us the question that truly changed it all which was " Have you ever heard of Autism?" OF COURSE I HAVE I wanted to say, but I didn't, all I could say was "your talking about something like PDD-NOS, because he doesn't have the conventional signs of Autism, right?" She agreed and asked us to return in a week to confirm her diagnosis. So when we returned a week later she confirmed her diagnosis. Gabriel officially had ASD (Autism Spectrum Disorder), PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified.)
We went home that day and and I admit it, we mourned for a bit. How could we not? We knew Gabriel would struggle in life no matter how much help we got him. He would face challenges we would never understand. Once we got over the initial shock we jumped into action. We called an ABA therapist service and scheduled an intake immediately and he started services when he was about two and a half. He needed over 20 hours of therapy a week. In short, this person would practically be living with us, it was daunting.
So here it is September and Gabriel is talking so much. His personality has grown and he is so happy, not the crying, unhappy baby he once was. Don't get me wrong, Gabriel still has the days were his meltdowns are in abundance and he has trouble sleeping (which he takes melatonin for per his Doctors suggestion.) In October he will go for a re-evaluation and address his energy level. Every day bring us new challenges and every day he learns new words. Its amazing And I could not be prouder of him.
One more thing before if your still hanging in through this long story!
That Word AUTISM. Has such stigma, some people think of tragic, stories of mothers and fathers who's dreams and aspirations for their child were ripped away from them by that one FREAKING word. But others think of Moving Forward and hope for the future, your children might have a different future now but Autism is not a Death sentence, you can win! Fight for their future, it will be the most Important thing you will ever do. ALWAYS ASK QUESTIONS!
I have been considering this blog for a while now. Hoping that other parents, grandparents and caretakers of autistic children will read my story and maybe someone will feel a little less like they are alone in their particular situation. Before my sons diagnosis, I read everything under the sun that pertained to an odd behavior or symptom (which I'll get into in a moment) he might have, because my mommy intuition told me that something was amiss. So before I start about the ins and outs, highs and lows of our journey, I just want every person reading this to know that you are not alone. Someone out there is going through this journey with their child too and they, like you, are looking for the answers. No matter what religion you are or your belief system you are part of, the one thing everyone can agree on universally is HOPE. THERE WILL ALWAYS BE HOPE. With that said, this is our story.
Mom of two, very active boys. My Husband and I work together everyday facing the new challenges of raising our two boys. Our oldest is a typical 5 year old (is there such a thing?) and Gabriel our 4 year old is anything but Typical. He makes sure to keep us on our toes!