Friday, March 14, 2008

It's Deaf History Month!

Yesterday kicked off Deaf History Month. I've been planning for months to use this month to start a history on my blog of our journey with the Beast, starting with his newborn hearing screen, and following up until now. Instead, I got a call from the school yesterday telling me that they know they have to provide him services next year, but they don't really have what they need. So, they're offering me second (or in my opinion, bottom of the barrel) best.

There are a few things that need to be made clear:
1. He is NOT just a number that you have to service. He is my child, and he has needs. It is the responsibility of the school to meet his needs. Period.
2. There is so much more to him than just Deafness. Get past the hearing loss, and see the child. Then, you'll understand his needs much better.
3. I haven't spent the last 4 1/2 years working my tail off to get him to where he is just so someone put him somewhere, potentially allowing him to slip through the cracks and regress. The simple fact that I am his mother makes me powerful. I will NOT stop until he gets all that he needs.

Apparently, we make too much money for him to go to the local school which has a brand new pre-K program coming in. But, we don't make enough money to get him what he needs ourselves. (My opinion on the way middle-class children and their families slip through the cracks is a whole other blog post for another time.) So, he's got to go to Head Start. That would be fine if any of the other kids there spoke his language. They don't, though. More than 90% of those children speak Spanish. I have no problem with that, except that the Beast has to work really hard to understand people who speak English clearly. Imagine the frustration for this child at having to overcome accents. Additionally, the academic curriculum for Head Start contains several things that he has already mastered. He knows his shapes, numbers, colors, alphabet, writing, coloring and cutting. He's putting letters together to sound out words. I'm well aware of the fact that he has more than academics to gain from the program, but why should we place him in a situation where he'll be bored academically?

Another issue is his sensory integretion needs. For those of you have raised hearing impaired children, you know what I mean. It's not just his speech and reading that has been affected by his hearing loss. It's his sense of balance, sense of where he is in space. It includes his ability to hear and process what is being told to him, and respond accordingly.

He has been in an English-speaking mainstream classroom with 12 other children this year. The teacher has had the assistance of a special ed. teacher AND several aids. Still, the Beast is the odd one out. He can't sit like the other kids. He can't respond at circle time like the other kids. He's overly impulsive and distracted. He's in trouble. A lot. All of this goes back to his sensory integration issues and damaged vestibular system. The school district had their OT's look at him, and they acknowledged his issues, but said assistance with it wasn't educationally necessary. I find that laughable. How can anyone suggest that a child who has difficulties feeling comfortable sitting in a chair possibly have an effective experience with learning in today's classroom?!

The Head Start program will have around 16-18 children, most of whom don't speak his language. It will have one teacher and one aid. If the Beast got lost in the shuffle with smaller numbers of students and bigger numbers of teachers, what will happen to him in this scenario? This, my friends, is setting him up to be lost in the shuffle and struggle with frustration, esteem issues, behavior issues, and so much more.

This is my biggest argument: If my child were autistic, there would be a program for him. If my child had Down's Syndrome, there would be a program for him. If my child were in a wheel chair, there would be a program for him. If my child were signing Deaf, there would be a program for him. But, because he's oral Deaf (by HIS choice), there is no program for him, and he gets lost in the shuffle. What a waste! Here we have a child who has really beat the odds, and doors get slammed for him because of it.

May I suggest something different to the powers that be? May I suggest that, rather than just putting him somewhere and hoping I shut my mouth about it, we build a program for our oral Deaf children? With the improvements in hearing aid technology and cochlear implants and earlier identification of babies with hearing loss, we are going to see so many more oral Deaf children coming through the system. Are we just going to put them all somewhere? HELL NO!!! We are going to embrace them, nurture them, observe them, and build them a program to meet each and every one of their needs.

This is my cry out to other parents of Deaf children, to their educators, care givers, and those who hold the power to improve our educational system: Stand with me! Stand up in defense of these amazing children. Raise your voices and demand the best for our children. Fight for the education they deserve. Do your research. Gain an understanding of the needs and implications of hearing loss in children. Be their mouth pieces. I will not be quieted. I will not be put somewhere. I will fight this fight until there is no longer a need for it, which I assume will be long after the Beast has already been through the system. Empower yourselves on behalf of your children. Those who come behind you will thank you for it someday.


finnish mama said...

I knew there was a reason YOU are "the beasts" mother. You are SUCH an amazing mother and you are BOTH lucky to have each other (this is Heidi btw...just on my mom's computer)

love ya!

Sonja said...

It's a good thing he was sent to you, you are an awesome mom!