The change we need

So I just got home from a very long day. Lil girl had her eval, posted about all of that earlier, then had school. So here is the thing I am extremely happy to find that lil girl’s intelligence is through the roof. Here is my struggle, she is one to two points too high for other services. They recommended that I go back to my pediatrician and request referrals for private evaluations for speech and OT. She attempted to line up every toy they gave her, but the examiner stopped her. When this was pointed out I was told that it’s okay because she was lining up colors.
When I pointed out that she imitated everything the evaluated did including the words that went with drawing a circle (examiner said “circle, circle, circle” while drawing a circle … lil girl with a crayon in her right hand still coloring took the lady’s crayon and drew her circle over the lady’s saying “circle circle circle”) I was told that is what they wanted her to do.

I was told that her intelligibility is not a concern at 34 months old, because she gets her point across with her limited vocab and through hit or miss pointing. She is understood enough for them to consider it “acceptable”

I was told that i need to work harder at getting her to use a fork and spoon when eating because she has a great grasp for coloring. I try with the fork and spoon but I am sick and tired of being hit by the fork thrown at my head. That is what happens if I have her use a fork. But if I don’t give her one on her plate I have her food thrown at me in frustration.

She is potty trained to an extent. She will not go to the bathroom on her own. She would rather wet herself before going alone. Other times she will simply pee where she is sitting/or standing without regard to the need to go.

She socializes with adults, but not peers. Her socialization was scored low because of this. They don’t know what to recommend because I already have her in preschool part time, and take her to the park and other venues where she can interact with children her age. She just wont.

The evaluated told me “She has no regard for danger.” This was not a question, this was a statement from watching her stand on the chair and not care that she was falling off of it. This was watching her do it again and again with the same results. This was her sticking her hand in my hot coffee without regard to it being hot.

She can not show the difference between a boy and the boys when shown a picture.

Yet I am left with the statement “We are sorry she does not qualify for services, you must go back to you doctor and request private evaluations. Or you can wait until she is three and go through Child Find”

You see here is a child who has dx of developmental delay. She is high functioning, yet too high functioning to actually receive help. This is where the divide in our community comes in. High Functioning vs Low Functioning … we each battle our own demons. We fight the same fight. If we were to band together and raise our voice as a unified community how different would our world be? How much could we change if we looked at it from all sides of the table?

Having a high functioning child is kind of a double edged sword. You know your loved one struggles yet you are not eligible for services. Having a low functioning child is not any better. Your loved one requires more help for their struggles than our system provides.

When will we demand a change for our loved ones? when will we be given the chance to give them the best life regardless of their functioning level? When will we see, within our own community, that our end goal is the same? That all we want is what is best for our loved one?

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s