There’s always a story in the news (it seems like) about a profoundly autistic child (like my son) who’s missing and when they find them… they’re deceased… usually in a body of water. My son isn’t just non verbal level 3 autistic with intellectual and language impairment, but also has profound intellectual disability, profound expressive receptive language disorder, gmfcs III ataxic dyskenetic cerebral palsy, Lennox Gastaut Syndrome (a severe intractable developmental and epileptic encephalopathy), among many other disabilities and medical complexities/fragilities… and knowing how to keep himself safe, finding someone to keep him safe, or responding safely to another person if one were to be around… would be impossible for him. He knows NO danger. He would most definitely get in the car with a stranger unaware of what they could potentially do to him and there’s no possible way of explaining that to him as he can’t understand words other than basic one to 2 word phrases that are a part of his frequent, daily life/routine (like bite bite or no, for example). And he would 100% walk as fast as he can (he’s isn’t able to run/jump/skip,etc…) into any body of water regardless of depth or what lives in it as well. And a car? Wouldn’t think to wait until it passes! An animal? Pull whatever’s tail or play with its mouth! Oh God. I’m going to cry. Hysterically. He scores cognitively, emotionally, socially, and basically all around mentally under the age of one, however, between 6-9 months minimum. Could you ever expect a 6 month old, even, to survive on their own for ANY amount of time though? Absolutely not. So neither can he. But to make matters worse he has the motor skills of a 12-18 month old (12-15 fine mirror and 15-18 gross motor). So his body, while still severely disabled, it is not PROFOUND like his mind… so it can do more than he can understand it shouldn’t! All while being the size of his chronological age (I don’t do preemie adjusted age because it’s technically 2 weeks since 37 weeks is full term) of 7 years so he can climb and reach higher, walk to deeper waters (he is like typical autistic children/people and LOVES water… baths are his sanctuary…), and things of that nature. It’s terrifying and I just don’t know what to do. I wish I could stay up 24/7 and keep my eyes on him at every point in the day, but I HAVE to sleep. My husband has to sleep. Everyone has to sleep. So what do we do? We already live on separate shifts but when he’s working… his shifts aren’t spent keeping a watchful eye on him. It’s spent earning to provide for our poor and struggling family. So he can’t quit to exchange duty with me forever. Or until death due us part. So what do we do? A lot of hoping? That’s not enough… Nurse? What if they harm him and he can’t tell us? That happened to him at school before. And it was completely on me. I saw abuse there and reported it… got them in trouble and thought it’d be a good idea to leave him there. I sincerely believed they’d be too scared to ever harm another special needs child. But I had the angel sense on him. I learned differently. Pulled him out that day. He’s homeschooled now. And has been since. I saw red. My thoughts were disturbing, reckless, and dangerous. But if I left in handcuffs, who’d hold him through those tough next few however long till he heals? I listened constantly on his monitor so I caught it immediately and spoke on it and told them I heard and was on my way and sped there! So it wasn’t for long… he moved on quickly, but, STILL! I called the school after speaking on the monitor also letting them know I was listening by making the call where they could hear me… and told the office to get him the fuck out of the room NOW. I heard the principal and resource officer come in and do me one better and get ALL the kids out. I was proud. They believed me and those babies were gonna be protected today. I was making sure of it. I made sure their parents knew too. Oh and if you’re wondering how I knew they were hurting these children… I worked there as Quin’s aide without pay as they worked through their hiring process so he didn’t have to miss too much school in those initial months. He too had a bad experience with ABA. Why I hesitant to try it for his violence currently. They tried to make me let them make him request ME. His MOM. It didn’t last long. I cried silently for a short while then went and picked him up because I couldn’t do it. He was crying for me with his hands up so incredibly confused Mommy wasn’t responding to his cries. I couldn’t stand it and let this continue to occur in OUR home. His home. This baby has been through it. And for his story to end like this tragedy? No. He’s beat death way too much for this to be the end of his story. He didn’t drink his amniotic fluid in the womb and they never figured out why. I got polyhydramnios from that and went into preterm labor as well. He was born at 35 weeks. Was then born with nuchal cord (cord around his neck) and wasn’t breathing, had to have CPAP for a few minutes… then they handed him to me thinking he was ok… then a few hours later he was showing signs of mild HIE, seizures, and blindness (which ended up being delayed visual maturation, he’s not blind or visually impaired -from an eye and this injury standpoint anyway-). And THEN at 3 months he went into cardiac arrest from near SUDEP resulting in vtac and vfib after resuscitation… and at some point he also spit up clumpy rice milk (the pre made reflux formula wic supplies with doctor’s prescription) and choked causing apnea and eventually loss of oxygen to the brain and body. He got severe HIE from this which led to everything I mentioned earlier as well as chronic lung disease, CVI (the non eye or first injury specific visual impairment -it’s brain based-), and has been in and out the hospital with respiratory distress needing inhaled epinephrine, respiratory arrest requiring being bagged once even, malignant catatonia, sepsis, 1000s of ER visits total, 100s of hospital inpatient stays altogether, etc… It’s been rough. But since being homeschooled he hasn’t gotten sick once and is thriving. A peak we got from pulling him out over the abuse… his health did a 180° turn. He has 0 problems medically now. Including (for the most part) having seizures! All lay on the developmental and physical issues now. And I have become content with however that turns out. I love him anyway. I just wish he could comprehend the same amount he can do. You know? But yeah. I wish all bodies of water could be gated.
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