Us against Them

Owen’s mom is a speech therapist with 30 years of experience in special education. Over the weekend she came by the house and I filled her in on the situation with the school. She was quite saddened by what she heard. She encouraged me to think in terms of – “what can we do as a team to help Nathan” instead of thinking about it in adversarial terms.

It made me think…why does it have to be an “us against them” situation?

I’m not looking for a fight – I have enough on my plate already. I feel I’ve been compliant with their requests. I’ve done it “their way” so far. I wanted Nathan integrated into a class with typical kids – instead he is in a class with severely handicapped kids and integrates in a class with kids with moderate disabilities. I wanted him to have a one-on-one aide – instead they have a few aides in the class and all the kids share aids. I wanted them to pay for a speech evaluation and buy him a communication device – instead I paid for the speech evaluation, communication device, and independent speech therapy. I wanted specific therapy times written into the IEP – instead they have him as having PT, OT, and ST “consults”.

I’ve cooperated. I’ve done many things their way.

And I give them credit for having a good program. The teachers are fantastic. They have lots of equipment. They do a good job stimulating the children. The wheelchairs stay parked outside and the kids get moved around, they are taught new things, they are challenged. The kids are happy and learning. I commend them for putting together such a great program.

And the more I think about this situation, the more I realize that they’ve tried to put together a great generalized program that fulfills most of the needs of most of the kids. And they’ve done this well.

But all of the kids have individual needs that have to be meet. Even the State understands that kids with special needs require individualized education in order to learn – hence the term IEP – Individualized Education Plan. And I think this is what’s lacking – individualization.

I honestly feel that I’ve done everything I can to give Nathan the ability to receive a FAPE (free and appropriate public education). I’m not trying to pass on the responsibility to the school and sit on my laurels while they do all the work. To give you an example – last night I went to bed late because I stayed up for hours looking at boards on boardmaker. I woke up and read a few chapters on a book on augmentative communication. I spent 2 hours on the phone with dynavox learning how to import pages from boardmaker and getting tips on pages/layouts to improve Nathan’s access. Then I spent an hour programming more pages and then another working with Nathan and Ronna on the device. And this is just today. I am doing my homework. I am doing the best I can.

But according to the Federal government, the schools are in charge of teaching the curriculum to our children, so they need to do their part. It’s not just about getting speech therapy with the dynavox. It’s about being able to teach Nathan how to access the curriculum. It’s about giving Nathan the possibility of learning. Because learning isn’t passive – it’s active. If you try to teach me something and all I do is sit back and watch, you better believe I didn’t learn it. But if I can interact with it and be a participant in the material, I can learn it. The communication device presents Nathan with this opportunity. So I believe the school needs to implement an INDIVIDUALIZED approach to help Nathan learn using a communication device.

And this may mean hiring a speech therapist that has experience working with communication devices. Or buying a communication device that accounts for Nathan’s lack of head control. Or creating innovative ways of accessing the curriculum through the device.

My point is that I wish it didn’t have to be this way. I wish the school could recognize the gargantuan effort that we’ve been making, and meet us in the middle.

But they don’t believe Nathan actually understands the world around him and that’s the saddest part of all.

Charlotte and I went through a couple of evaluations that she has to determine a child’s level of ability. In fine and gross motor he was at 4 months, in receptive language and social skills he was at 8 months. So if you test Nathan conventionally, that is the most that he will ever achieve, unless his motor skills improve.

But of course we all know that this type of test is NOT appropriate for kids like Nathan. And then I went back to this evaluation:

Neurocognitive Assessment

This was performed at the Infancy Studies Laboratory at Rutgers University when Nathan was 18 months old.

Here’s a little bit of information about the study:

The main objective of this research is to facilitate effective assessment and intervention for nonverbal, motor-impaired children, particularly children with holoprosencephaly (HPE) and related brain malformations. HPE is a rare and serious developmental neurological disorder resulting from incomplete cleavage of the early fetal brain. Children with severely limited motor abilities and no expressive language due to early brain insult may have better than expected cognitive and receptive language skills. Assessment techniques that bypass or minimize these impaired channels of communication can lead to a better assessment of cognitive abilities. Research goals include the identification of candidate brain substrates for emerging abilities and correlation of neural abnormalities with behavioral outcomes.

Here are a few excerpts taken from the report:

Excerpt 1

Nathan scanned to the right and left frequently during each trial. His looking time indicated that he knew the names of 15 of 26 pictures (58% accuracy). Items that were correctly identified included dog, diaper, duck, cat, bib, ball, book, key, chair, bed, bread, crib, fish, tree, and coat. He did not demonstrate understanding of car, shoe, bird, hat, bear, block, truck, clock, phone, boy or boat based on looking time.

Excerpt 2

Nathan indicated recognition of 4 of 10 (40% accuracy) environmental sounds via picture/sound association including dog barking, baby crying, vacuuming and duck quacking. He did not match the following sounds with their pictures: phone ringing, piano playing, cat meowing, boy sneezing, car horn beeping or cow mooing.

Excerpt 3

Nathan was becoming a bit restless; nonetheless, he showed a strong novelty preference by looking longer when the deviant tone pairs were presented. Once again, he demonstrated that he recognized a change and discriminated between rapidly presented tone sequences.

Excerpt 4

Nathan habituated to the familiar sound fairly quickly during both procedures. He demonstrated a novelty preference for /da-ba/ and for /ka-ga/. This gave an indication that he was able to discriminate speech sounds that were presented in rapid succession.

Excerpt 5

Nathan demonstrated that he learned the association between the target tone pairs and the toys used for visual/auditory reinforcement, suggesting that he can make contingent, conditioned responses. There was also evidence of “checking behavior” as he frequently looked in the direction of the reinforcement toy box as if anticipating that something was going to happen even though the target auditory stimulus had not yet been presented.

Excerpt 6

The MacArthur Language Inventory for early language skills was completed by Nathan’s parents and was a useful source of information. Nathan reportedly understands 78 words and 10 phrases on this inventory. This suggests an understanding of single words and familiar phrases at the 10-12 month level of development. Nathan attempts to imitate adult actions, such as singing, typing on a computer keyboard and turning the pages of a book.

Why is this important? Because it shows that, at 18 months, Nathan was already doing MANY MORE things than the school believes he can do NOW. I was told that, if given 2 choices between a ball and something else, when asked verbally, he will not pick out “ball” by looking. Nathan now knows many more concepts than he knew back then, like object permanence and yes/no. So it’s just a matter of giving him the right motivation to perform the tasks asked of him.

All of this brings me back to the fact that many of the issues we have with the school are related to the fact that they do not believe he understands much of the world around him. Well 2.5 years ago we proved that he DOES. So why are we backtracking now? Why isn’t the school moving him forward cognitively? And why are we having to do all of the work to educate when that is supposed to be their primary job?

I guess it is a question of belief. Do they believe in Nathan or not? Do they believe he has potential? I think his teacher, Belinda, believes Nathan has potential, and she is doing her best to help him. But she cannot do it alone. And if the belief was generalized, there wouldn’t be an “us against them” situation. We would all be working together to help Nathan. Instead of me spinning my wheels to do it alone.

I hate having an aversarial situation with the people that are supposed to be helping Nathan. But if this is what I have to do to help Nathan learn and achieve his potential, then I will do it. And I will do it to the best of my ablity.