The Dark Side of Autism

The Harsh Reality of Autism, it's not pretty and some days it's beyond difficult. It can be depressing and heartbreakingly sad. Today I'm sharing the difficult reality that I live in daily. I generally like to keep it positive and pretty, sharing our small victories and progress, but some days I think people don't realize what it's truly like to be an autism parent.  Imagine this boy not strapped in a car seat and you are trying to get him dressed, or in the bath or in bed, this is my reality almost daily. Meltdowns are nothing like tantrums, when I tell people about Jack having one, they feel they can relate because they have children the same age or remember they're own child at Jack's age. While I appreciate that people want to relate, I can almost assure you that they cannot. Today I am giving a glimpse to the other side of our rose colored progress filled life, for the sake of spreading awareness and understanding of the dark side of autism, the moments you most likely never see. For my fellow autism parents I want you to know you are not alone, even though you may feel like it often. God gives me strength to get through these moments, even if in the moment, it feels like I have none.  There are days I wonder if this type of behavior is our forever life, although I don't know the answer to that, I pray unceasingly that it will end some day, preferable before he is big enough to cause real harm to himself or others. Many people face this dangerous aggressive behavior daily with older children, I read so many stories about they're struggles with it. I remain optimistic that this too shall pass, with a touch of fear it may not. That's my reality, like so many other autism families, the struggle is real, the worry is real. We continue the therapies day in and day out waiting for something to click in our children. We try everything, probiotics, prebiotics, CBD oils, iron, magnesium, gluten free dairy free diets, biomedical therapies,  you name it the community is trying it, all in an attempt to correct something that's wrong and affecting our child's behavior, looking for some peace. I have yet to find my answers, personally I am a  skeptic of all of it, because I know my son's behaviors are directly affected by his chromosome syndrome.  Believe it all not, not all children with autism have been genetically tested. Although, some claim that various versions of this list have helped them. What I do know is that I am a warrior and I will never stop being a warrior for my son no matter how painful, sad, or how beautiful and amazing it can be. 

This meltdown lasted almost 30mins (the entire way home) and has continued for the last two hours on and off. It all started because he didn't want to come home with me and he was trying to get out of his seat and ultimately out of the car. 

Hugs From A Fellow Momma Warrior

Xoxo

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