Mommy Instincts vs. Everybody Else

Mommy Instincts: We all have them, sorry dads but its a mom thing; but sometimes we forget to hone into them, especially when dealing with doctors. When Jack was first diagnosed with his Chromosome syndrome, I didn't realize right away that we were kind of blown off with regards to the impact it could have on Jack. I mean yes other than behavior, sleep and autism he was not presenting any other symptoms, however looking back it was like "Yep case closed cognitive delays will be his issue, diagnose him with moderate autism to cover our ass!" At least that's how I felt! So ya, in one year's time Jack has gone from moderate to high functioning, he has thrived in speech, and has perfect comprehension and cognitive abilities. He's keeping his BC on her toes, as she has to constantly write new ABA therapy programs, as he masters them in record time!  I knew back then he was not moderately autistic, I saw what he could do at home and I also knew he was extremely stubborn, so getting him to comply during a five hour test wasn't going to go well. 

So here we are a year plus later and I decided to push for a full medical work up on Jack. Our current Pediatrician is great, the minute I mentioned it she was on board. Personally, I feel I need to know for my own peace of mind, not to mention some of the horror stories I have read from various mom's on FaceBook support site Chromosome 17q12 Support Group. Stories about their child's heart condition that would have never been caught at a wellness check, had they not pursued the cardiologist on their own. So here's what we know so far, renal is all good and so is his heart. Phew. After some blood work, Jack does have Iron deficiency, not shocking since he's a typical autistic carb loader who screams at the site of anything vegetable or meat.  So the recommendation was 50mg/day for 3-4 months and then recheck. From day one Jack did not tolerate the iron...those are my mommy instincts speaking. Jack started vomiting which was followed by diarrhea for four days and then one more vomit on the fourth day, The next morning I did not give him the iron and wow no illness, weird. Sounds like a stomach bug right? Ok, ya, sure he had no fever though, and he seemed absolutely fine accept for the obvious, but ok Doc!  After a week off, I started the Iron again, even slower, smaller doses than before, the day we hit 30mg of iron poof vomiting followed by diarrhea, again no fever, and I stopped the iron. Third time's a charm right, yep same results 30mg and poof vomiting etc.  Today I went internet hunting wrote everything down on paper and hit the doctor's office. Finally they agreed somethings up, its rare (our favorite family word cause that's how we roll in this house) but possible she said!

The point of this story is mommy instincts are no joke, they are a real God given talent and for good reason. Whether its a doctor, a teacher, a BC, BA or an IEP...if you feel something isn't right don't stand down with the attitude that "they are the professionals so they must know best" kind of thinking! When we were first diagnosed in November 2015, I was drowning in this autism world, clueless on the where and how to even get this so called ball I was supposed to get rolling. I had to do all the research and make all the phone calls on my own. In the beginning, I went along with the plans laid out before me, thinking that the gut feeling I was having was merely worry and fear of the unknown...till it wasn't! And certain things didn't feel right, certain people working with my son didn't feel right. To this day, his so called one and done seizure that doctors told me were from his GERD (severe acid reflux) was actually caused by the abrupt stopping and starting of medications causing a shock to his system...but what do I know those are just my mommy instincts talking. If it was GERD then why only one seizure when my son actually suffered with GERD until he was a little over 18mos...Weird right? Mommy Instincts go with them, listen and act! I see so many other moms lost and asking for advice on various support sites, with comments like "I'm not sure I like the therapist and I hate to make waves and the IEP meeting at school didn't go the way I thought it would" etc. etc.  If you don't like your child's BC for ABA Therapy, swap em' out, don't be afraid of confrontation, short and sweet, "I would like to know if we could get another BC for my child, its not a good fit..." Boom, Done! Just because the doctor thinks one way doesn't always mean they are right. Follow your mommy instincts. We are advocates for our little people, and not one autistic child is the same, we are not one sizes fits all.

Hugs From A Fellow Warrior
xoxo

I Am In Awe of the Progress

Oh Hi There! It's been too long and I apologize! Most of my followers are family and friends, so you know what a year we've had, to sum it up this past year has been...well...crazy! We put our house on the market in January, and within four days it was sold. We searched endlessly trying to find a new home, and ended up a mile down the road. Jack started ABA therapy in February and we moved into our new house in the beginning of April; a transition I was so worried about for Jack, leaving his place of comfort. However, like many of the surprises he gives me daily, he didn't even blink an eye when we moved into what he calls "Sweet House". Not only did he handle it well, he also transitioned himself out of the crib and into the big boy bed, the same day we moved! It really was overwhelming for me and he did it all in stride. With only two months to get the house organized and ready, Jack's third Birthday came and went, summer flew by, the holidays were a blur and so here we are!

Jack is about to complete his first year of ABA Therapy, he now goes 5 days a week for 5 hours a day. The progress is nothing short of amazing. One of the biggest concerns with 17q12 microduplication is cognitive delays or learning disabilities, as of this moment this is definitely not a one of Jack's issues. He is progressing so quickly, that he is keeping his therapist on her toes, and she is constantly writing new programs for him to master. In less than a year Jack's diagnosis has gone from moderately autistic to high functioning. Although there are other children who are on the spectrum and have the same chromosome duplication, I recently re-read the related issues of someone with 17q12 duplication. Behavior issues; such as defiant, uncooperative, extremely demanding, Speech and Language delays, and Sleep problems are all common characteristics of 17q12, and it became clear to me that his chromosome duplication is the direct cause of his autism. Recently, I thought he doesn't have autism he is so going to "outgrow" of this, um ya no he's not, it is chromosome issue. However, its ok, because what is happening, is that he is being given that skills to cope with his behaviors, and his language was delayed not impaired and the behavior consultants are helping him learn to speak and understand how to use language. This video is the progress he has made in a year and a half...

Pretty amazing right! Although I loved his sweet little "foreign" language, it was also heartbreaking when he would tell me a 3 minute story and I could only understand 5-6 words at 2 and 1/2 years old.

We still experience a lot of behaviors but I feel like the are just more age appropriate behaviors compared to the 25 minute meltdowns 5-6 times a day, that we used to have. Although on occasion those long duration meltdowns do creep in, its maybe once a week or even less. And his behaviors at the center have decreased down to 10 minutes a day out of 5 hours and we even see days with zero behaviors.  They are also working on his food issues.  At an astounding 55lbs and 42" tall, its obvious Jack is a solid boy, but his all carb diet has me worried, especially since diabetes can be a trait with 17q12. So the center works on getting him to eat different foods, so far he is eating an apple and they just started working on carrots.  It's amazing how this therapy works. Throughout ABA therapy practices, the main constant is "do this and you can have this" so for example "take a bite of this carrot and then you can have a bite of the pizza". The behaviors can be anywhere from refusal to a full blown meltdown, and carrots and pizza flying across the room. But in a matter of 2 weeks he now eats 3-4 carrots at lunch time!

We also decided not to put Jack in preschool this year, one because in September he really wasn't ready and two ABA therapy is like a preschool with intense one on one learning, so why would we interrupt that for preschool where its 20 to 1. Our goal is to start him in the fall.

So yes Progress, I am in Awe of the Progress! It's been an incredible year. There are so many hilarious stories to share, like the "Toddlers, the Art of Swearing", and "Bubbles...I want you, just kidding, get away from me".  But I will save these for another time, and I promise it won't be so long this time! Until then...

Hugs from a Fellow Momma Warrior!
Em xoxo