Ninja Turtle’s Journey Continues

Posted On December 5, 2013

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Well, Ninja Turtle had her evaluation with the school board today.  She failed, and spectacularly so.  They screen a total of 5 areas:

  • Adaptive Behavior
  • Personal/Social Skills
  • Communication
  • Motor Skills
  • Cognitive

Of the above, Ninja Turtle scored more than 2 standard deviations off the curve in the first three, 1.5 standard deviations off the curve on the 4th, and the only one she passed was the Cognitive section.  Essentially, she is smart enough to learn, but unless you can find a way to get that information into her brain, it is useless.  OR, at least that is how my exhausted brain is translating it.  Now, we wait for the formal full educational evaluation.  And then will come the staffing meeting, where the IEP is developed.  I am not entirely new to this process, but I am new to having to do all of this with this severity of delay and disability.  On the Personal/Social Skills arm of the eval, she scored an 11, where passing is 24.  

 

Essentially, when you put all of the pieces together, my beautiful 3 year old girl has the skills of a child about half her age or less in most areas, but the intellectual capacity that does not match up with that at all, because she is highly intelligent, she just can’t show us.

 

I knew beyond a doubt Ninja Turtle would have delays, and I knew they were drastic.  But as a parent of a special needs child, it is very frustrating to sit and listen to people say things like “oh, well why is she not potty trained yet?  You must be lazy and not pushing her to do it.”  No, lady.  She is not potty trained because her skill set is that of a 15-18 month old.  How many 15 month olds are potty trained?  

I will not ever place unreasonable expectations on my child and I will not push her toward something she is not ready for or able to handle yet.  We might try the potty training a little more energetically at 4, maybe 5, when she has had some therapy under her belt and has maybe begun to make advances in her skills.  But if not, oh well.  I will cross that bridge when we come to it and I don’t expect to be judged by people who will never understand until they have walked a mile in my shoes.

Ninja Turtle is up to 4.5 mg of melatonin, and still is not getting a full nights sleep.  We think this might be because we had run out of her l-theanine and were trying to see if it was really helping, so we haven’t had any for two weeks.  The outbursts without it have gotten more severe, and we decided that it was better to continue her on it, and we started that back today.  It is quiet in my house, she is napping.  And so mommy is going to go take a nap, too!  But first, I wanted to get this out there.  Share this with your friends.  The more people that are informed the better.

 

People who have not had the privilege of raising a special needs child have absolutely no clue what that is really like. You know all of those great parenting tips they spout off? Chances are, when you have a special needs child, they are useless.

A child with special needs will often process information differently than their age peers will and so the learning process for them is completely different.

Other parents look at us like we are crazy or the worst parent in the world when our child has a public meltdown, and they think it is a failing on our part.

I am writing this out because I am tired of the stigma. I am tired of feeling 2 inches tall from the stares from other people in public places.

My child has autism. If you do not know what that is, you should get informed. You know that kid that had the complete meltdown in the store over what seemed like a minor thing, so you thought they were a spoiled brat? Or that kid that, instead of saying excuse me, said get out of the way, so you thought they were a rude, bratty child? That was my kid. And our day had started before your alarm clock even thought about going off, and it will end long after you go to bed. For a child with an autism spectrum disorder, the minor details can be devastating to them. Change what time my kid showers for the day and life comes to a grinding halt until her sensory processing systems can come back online.

So the next time, before you make an assumption, ask yourself “how would I want my child treated if they had a disorder that affected them in every aspect of their lives?”

We stigmatize childhood disabilities and that is what creates this arrogant lack of understanding. It is time that that stops. If we inform ourselves and those around us about these special angels, maybe it will make a difference.

Because raising a child with special needs is a privilege.  We are granted these little miraculous balls of energy.  We get to revel in their presence and let them teach us what miracles lay in the world.

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