Paws 4 Gabriel
Our Family's journey conquering Autism
Gabriel as I had stated last time has been having a very rough time not only in school but also at home with being able to control his feelings which usually come out explosively and destructively. Gabriel needs a better outlet in the home on rainy days to be able to express his energy as well and finds a hard time focusing. His appetite is also out of control, just this morning we have had more than 4 meltdowns because he just wants to constantly eat. He has eating almost half a loaf of bread in toast alone before 10 this morning! His High energy level is just burning through those calories constantly. Atm we are waiting to hear back from several in-home therapy places and working with the crisis center
Gabriel has been having a bit of a tough time theses last few months and has been finding it very hard to control his feelings and emotions. He has been experiencing strong repetitive behaviors, especially involving his food and clothes. Often he burst out crying or very angry and defiant, not only is it impacting his family but also his relationship with friends. We hope to schedule a new meeting with his Neuro soon and discuss some of his new and resurfacing behaviours.
Thanksgiving is on the way! I feel like I have been under a mountain of meetings and paperwork! Gabriel's progression is very good although some behaviours issues has begun to place a damper on his other improvements. He has begun to REALLY bully his brother. His outward aggression is touch and go too. We have begun to handle the aggression by putting him in his room anytime there is even a small amount of aggression. This seem like it may be starting to work!
Today was the last day of School! Gabe's going to start his summer non-regression course on July 9th. He I'm sure will have a blast!
We will meet with a behavioral therapist this wednesday for an intake for outpatient services to work on the new behaviors that have been giving him a rough time. Can't wait for some fun in the sun!
Lately in the last few weeks Gabriel's energy level has been through the roof! His teachers report needing ALOT of redirection and prompting. This week has been particularly tough with him, he constantly wants to pick on his brother, taking toys, being combative and pushing and shoving him over and over. His energy level also seems to be much higher than we are used to and he is becoming increasingly more difficult to control. Increasing tenex frequency/ dose has not seem to had an effect on his Behaviour only makes him drowsy, there does not seem to be a time of day he is worse. Recently it just happens to be that any little thing might set him off, this morning he didnt want the shirt I picked for him and he had a full blown melt down, again this afternoon when his brother was napping he wanted his brother to get up and when I simply told him Ayden was sleeping he had another meltdown. He has started screaming NOO! and clenching his fists at his side, than, usually ends up trying to hit the adult he is upset at. At home with his brother he often antagonizes him, stomping on him, running over pushing, or slapping him. There has been no changes to home life and all of his teachers and aids are the same, So what has triggered the change other than actual age progression is a mystery.
Gabriel's progression in this direction is concerning and after speaking with his Dr she suggested a diagnosis of
So life has been a little crazy here, and things have changed a lot, in a lot of ways. First of all Gabe has been in school for almost three months now and will be getting his review soon. He takes the bus home every day which he says is " His Bus" and on Fridays he takes it both ways. Often he falls on asleep on the ride home as it takes and hour to get from school to home because he is the last stop! on weekends he still naps because with out a short nap our little Gabriel gets a little Cranky from all that GO GO GOING! He has become super intuitive and really have come to enjoy certain things like Ruby Gloom and many educational Apps on the Ipad which he often plays with everyday. He even has his own leap pad Explorer which he has become pretty good at navigating ( though my ipad is always his FIRST choice) He and his brother have begun to play more frequently together at home rather than parallel play, though at school him and his brother prefer to play with other playmates! We are so excited for his progress and only hope to see the same acceleration in the future months!
Gabe has learned some cool new things like how to sing Scooby Doo where are you, and pretty much eat anything with Jelly on it. His Language skills are leaps and bounds from where the were before and his motor skills as always get him in trouble! cross your fingers!
Yesterday we drove what seemed the endless drive to Boston Children's Hospital, through stop and go traffic and then Gabe got sick in the car. Once we finally arrived at the office we were late and rushed right in. We spoke to the Dr about Gabriel's inability to attend to tasks for more than a minute and any new types of repetitive behavior. So then we talked about different types of Medication, either a blood pressure med (to slow him down) or a stimulant ( to make him focus and slow down) and decided that under the advice of the doctor to try the stimulant for the best result over all, so it looks like Gabriel will be starting Methilyn 2.5 mg a day as soon as his prescription is filled, more on this when he begins the medication trial...
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!
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!