Last week I had one of the most gut wrenching days I have ever had as a mom of a special needs son. It was the look on a teachers face when I asked for a bathroom to assist my soon to be five year old in so he could finish pooping in the toilet vs his underwear. Yes, I get it all the time, he looks normal. I had to explain "He is one of your special needs kids" before she suggested and unmarked bathroom at the end of the hall. With all my heart, I wish he was potty trained, but truth is he isn't. We've been trying, we are making progress, slowly but surely he will get there, just not that day.
So as I stood there in the hallway, waiting on an unmarked bathroom, I had raw tears streaming down my face. For sooooooo long, I have mentally fought, "maybe" just "maybe" they are right and he is perfectly fine. Reality slapped me hard, as I handed my son over to his amazing pre-k teacher and asked if she could have the special needs teacher finish cleaning him up. All the while his classmates looked at him screaming "one more hug mommy, one more hug pwease".
I cried most of the day at work finally the realization that the genes don't lie, that our son will always need a little extra help, it hit home.
We got his CMA report back in December. Last week Dr. Sprouse sent her full report. I took a while to process the new information and that may be why it slapped me harder. It's the realization that no matter what we do, he will always have chromosomal differences that cannot be medically fixed. Per Dr. Sprouse's report: Dacotah has been diagnosed with Autism Spectrum Disorder, Klinefelter's Syndrome (giving him an extra X chromosome) and two Copy Number Variations of 5q14.3 deletion and a 7q31.32 deletion.
It became more obvious that he was further behind because we have a private FB group for kids with XXY and he was significantly still behind 95% of those boys. The Chromosomal Micro Array gave us the deletions, but it can't tell us how to treat or fix it. I can just say I am very thankful that given what they could have caused, they aren't life threatening at this point.
From his report: At his chronological age, Dacotah is at risk for language based learning disabilities, executive dysfunction, dyslexia (which we are seeing more and more), graphomotor dysfunction, and adhd. He is more reactive than his same aged peers in auditory, visual, touch, movement, and body position. He is more reactive than peers in conduct and social emotional. Dacotah is still a year behind in expressive language. At the time of his test he was 4 years 8 months, and he scored at a 3 year 7 month old level aka 10th percentile. Processing speed was 8th percentile.
I have yet to pick him up from school and him tell me what they did at school that day, who he played with, what therapist saw him that day. I asked him EVERY DAY.... Silence. One day when I pick him up, he will surprise me and tell me about his entire day... I am waiting.
So why share any of this? Because for me it is therapy, it allows me to not carry the burden alone. I don't expect anyone to understand. No two kids are alike, no two disabilities are the same. Some kids on the spectrum talk like professors, some never talk at all. Some sleep great, others can take medicine and never sleep. I don't want to change my son, but I want to give him EVERYTHING I can so he can have the tools he needs to succeed in life. I want to make it easier for him without my oldest hating me because she never had a mom because I was too focused on her brother. I want to learn how to balance and move forward. I just want people to be honest and be open and be alright with listening when the times aren't always peachy. There are hard days but step by step he will get there.
