Thursday, September 26, 2013

On Those Who Judge

High Functioning Mommy here. I've been itching to write this entry for a while.

It's an unfortunate, but common occurrence for special needs parents to be unfairly judged by those who consider themselves our peers. In all actuality, they are not peers. We may be in the same age group, maybe from similar economic backgrounds, sub-cultures, groups of friends, whatever. But unless you are a parent--or at the very least, have taken years of college courses and have spent years working in education or have NO right to judge us.

Here is my experience, the background story. There will be another entry to follow this up; because unlike the antagonist of this blog entry, I want to make sure our readers have all the information before they pass judgement on the one who decided they were qualified enough to judge the parenting of my husband and I.

Between the ages of one and two, Destructo was a terrible, and I mean terrible, sleeper. At the time we were living with my parents and my younger brother. Six people in a one floor, three bedroom condo. The condo was also situated over a row of garages. My husband and I moved in when I was about five months pregnant with Destructo. Our plan had been to stay with them until we got on our didn't quite happen that way due economics and cost of living and available jobs where my parents lived.

My terrible sleeper. We could not get him on a schedule. Of course, it didn't help that everyone in the house was on a different schedule. My little brother left for work before the sun was up. My father left several hours later. My mom, with her myraid of health issues, was a night owl. My husband was working overnights at a grocery store. And then there was the automatic garage door opener that went off at 7:30 in the morning below our bedroom. And my mother's dog, while sweet, wasn't exactly a quiet dog either.

We even tried the "cry it out" method. Once. He screamed for two hours until he made himself sick. I'll never subject a child to that abuse again.

The only thing that was consistent about Destructo's sleep pattern is that he always went down at three in the morning. Then he'd crash for at least six hours. At this time (Spring and Summer of 2011), he was already involved in Early Intervention and receiving Special Instruction and Speech Therapy. So naturally, if we were having a rough night, I'd kvtech on Facebook about it, because more often or not I'd be playing Facebook games to keep myself awake while Destructo ran laps around my parents living room while Wow Wow Wubbzy played on Nick Junior after midnight.

On May 22, 2011, I posted in my livejournal about it. Here's an excerpt:
And as if I weren't dealing with enough, [Destructo] is slightly developmentally delayed. I'm pretty sure he's on the autistic spectrum, but on the ADD/ADHD/Asperger's Syndrome end of the spectrum. His gross motor skills are fine, he was walking at ten months old. But he does not use language, he does not listen, he does not respond to his name. Everything we thought was first words were just sounds.

We're already involved with Early Intervention, he sees a Special Ed lady twice a week and we're waiting on the speech therapist. He's already showing improvement in certain things. He was evaluated last week for autism, I'll have that report on Tuesday to bring to his doctor (I'd be surprised if he WASN'T on the spectrum).

[Destructo] is also seen by a geneticist (who I have bitched about previously) and more recently a pediatric orthaepedist since his left leg is severely bowed. I politely told the geneticist how I unhappy how things were handled with the Fragile X testing, so this time, the lady explained to me what they were looking for (he got more genetic testing a few weeks ago that I'm pretty sure involved an electron microscope) and why, and I thanked her. Just talk straight to me.

And yes, [Destructo] has already seen a neurologist. First doctor to say my son is normal. XD Seriously though, the neurologist said that he's normal as far as he can tell, doesn't mean he's not ADD/ADHD but I guess we may eventually follow up with him again.

The Early Invention ladies keep praising me for getting on top of things so early, but I am just doing what's best for [Destructo]. I don't want to happen to him what happened to my brother and I...struggling through school, not getting one-on-one attention, my ADD/ADHD/Asperger's is totally not diagnosed and even though my brother's WAS, he was totally screwed over by the school district and dropped out of school.

If I'm still in New York when he's school age, I'm home-schooling him. I can't afford the Montessori school ... (already looked into it) and if [Destructo] is anything like me he will need one-on-one attention to learn, he'll be a visual and not an audio learner, and he will have the attention span of a gnat.

The reason I will be able to be his teacher is because I will understand him, and I will able to keep MY attention, because like all Aspies, I have a narrow range of focus in one subject...and that is my son. :)

Around this time, I'd done some research (like most of us special needs mothers do). I read an article that stated that autistic people either didn't produce enough melatonin to go to sleep at a proper time, or if they did, they produced it at the wrong time. Well, that seemed accurate for Destructo.

This announcement prompted some conversation from the educators on my friends list. I listened to what they had to say and actually felt better about public school. In fact, homeschooling is completely out of my head--Destructo needs way more therapy than I'm even qualified to give.

A week later (May 29), I made this post in my livejournal:
Got the report back from the evaluator for the M-CHAT. He failed five out of six questions he wasn't supposed to fail. This isn't a solid diagnosis but rather we are to follow up with a developmental pediatrician. On the other hand--his normal doctors think he's just a normal 18 month old with a language delay. If he does get a positive autism diagnosis (and just to reiterate, [Destructo] would be on the mild end of the spectrum), we would be eligible for more services through Early Intervention.

On the bright side...[Destructo] is using more words since he started with the Special Instruction teacher. The speech therapist doesn't even start until next week. He is using something that sounds like "ball" for his big red ball, and "okay!" which I think he got from his special instruction teacher...she says it a lot. He is also using "ba ba" for bottle more often even though we don't use bottles anymore. :)

One of the concerns I brought up to the doctor is that [Destructo] is very resistant to trying new foods. He will gag, and if I try and force it and he still doesn't like it, he will make himself sick. Sometimes when I cut up fruit for him, and force a piece in his mouth, he chews and realizes he likes it. But I can't do that with broccoli. I tried giving him a little bit of broccoli twice a day for a week. He wouldn't touch it. Once in a while I can sneak in some potato bites with his chicken and he seemed to like when I cut them smaller last night.

He won't eat his purees anymore and pretty much lives on formula, chicken tenders, Gerber's lil' crunchies (the two flavors he can safely have), and buckwheat pancakes. So his doctor said to ask the speech therapist about oral texture food aversion. I did at our initial meeting, and I'll have to demonstrate it to her next week.

Sometimes I can't help but wonder if [Destructo] thinks that new foods will make him sick. I can't say that I blame him there. :(

I made the appointment for the developmental pediatrician at the beginning of June; they wouldn't be able to see Destructo until the latter half of August, but the appointment was made.

Halfway through June, I made a post on Facebook about a long night with Destructo. You can see it below. Purple is me. Red is a not nice person. Blue is Destructo Daddy. Green and orange are female friends of mine who are also mothers, and yellow is my mother.

And this is where I will leave off...for now. Because wait until you see what I woke up to the next morning.

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