Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, September 27, 2012

Want to create a challenge?

If you are thinking that you have not given your school district enough of a challenge, I can tell you how to fix it. Yes, you too can up the ante just to see what your school district is able to pull together. How much are they *really* for your child?

First, travel to the others side of the world and bring home a child - or two - who has a cognitive impairment and is nonverbal.

Next, bring that child back to the U.S. Keep him home for a few months while he bonds with your family and acclimates, at least a little bit, to the culture. While you have him home, teach him to communicate using Sign language.

Once he's been home several months and you feel he's ready, enroll him in school. Well, you can't just show up with him. No, you need to set up lots of meetings and assessments to find out just where he's at developmentally. If you did your job right, you'll have brought home a child who is developmentally several years behind his peers and even better if that child has NEVER been in a classroom or educational setting before.

So now you'll be sitting before the district staff with a child who 1) is cognitively impaired 2) is non-verbal 3) is learning language for the first time. 4) uses sign language to communicate 5) has never been in school before. Work with them, spending months together building just the right program to meet your child's needs. It will take well over a year for it all to feel "right".

Once you've done that, do it all over again because once you have everything in place, it's not going to to feel "right".

I have to give credit where credit is due. As much as I feel panicky every time we have an IEP meeting looming over us, the actions of our district staff make me realize I have nothing to worry about. They do have my kids' best interests at heart. In my head I know what the perfect program for my boys looks like, but the reality is that is very hard to actually make happen.

It can sometimes be difficult to determine what is the most pressing need. For Asher, his most difficult area is communication, because without communication he can't move forward with anything else. Knowing this, I started signing with him as soon as I gained custody of him. Because he is developmentally much younger than Axel was at the time of adoption, he's been much slower at increasing his sign vocabulary. Evenso, he now has somewhere around 70 signs. (He hasn't started identifying pictures yet, so picture-based communication systems are not appropriate for him.)

With Axel it was relatively easy for me to figure out what he needed.  Observations were done by the staff from the deaf/hard of hearing department, who quickly determined that Axel's communication needs were not being met in the classroom. As I had stated in several meetings, at that time he was functioning like a deaf child, completely reliant on visual cues to survive. He was moved to a special ed classroom specifically for deaf students and he is thriving there. His communication skills grow every day and he's starting to talk more as well, but still, even the professionals who work with him agree that he still functions like a deaf child. It's because when he lived in Serbia he was in so many different settings with different languages he had to develop very strong visual skills in order to understand what was happening around him. Being moved every two years he never learned to understand spoken language, but the body language of those around him he could interpret. This is why Axel's ability to acquire sign language appeared so quickly.

Asher is a different child.  Although he has many of the same issues, Asher understood spoken language at the time he was adopted. He was also developmentally much younger and had only been in one environment his entire life so his visual skills were not as highly developed as Axel's were.

If Asher were a child with even a mild hearing loss we wouldn't have any problems. He would qualify for deaf and hard of hearing services through the district which would give him a full-time 1:1 staff person who could sign. How unfortunate it is that Asher's hearing is 100% perfect. Because his hearing is intact, it makes access to signed language very difficult to get in the school setting. I swear, the state needs to create a new category for hearing students using sign. We really are fortunate to live in a district where staff values my opinion about the boys' educational needs, and I am part of the team.

I've lost track how many times I've considered homeschooling the boys, but Axel really is doing well in his school, and Asher really needs to be around typical kids who are talking. Like I said earlier, in my head I know what the ideal program for Asher looks like. The reality is it's very difficult to produce.

On Monday I'll be going to visit a different school that is two towns away. (still in our district, but a different town)  I'm trying very hard not to dislike the program without having ever seen it. (I went down that road with Angela once, and changed my mind once I actually saw the program)  My biggest problem with this other program is the fact it's a significant distance out of my way. I like that his current school is just 1/2 mile from home, which is nice when I want to make frequent visits - or when I forget to send his lunch. There is also the length of time he'd be on the bus each day, the fact that he wouldn't know any of the neighborhood kids.  Also, twice a week I pull the boys out of school early to access private therapy services. Having him in the other school will add approximately 90 minutes and 30 miles of driving to my already busy schedule each week. No, it is not a good fit for Asher at all.

Here's what I don't understand. There is a similar program in a building right here in town, just a 5 minute bus ride. I know the teacher well, as Angela had her when she was in elementary school.  I've been told this program is full. It is not our neighborhood school but is where the special ed. kids in the district are usually sent. My question is, what would happen if we lived within the boundaries of that school? Would they be able to say "Sorry, we're full." or would they have to figure out a way to make it work? Lets see, two very similar programs, one is 12 miles away in another town and the other is 3.5 miles away in the same town. To me it seems like a no brainer, but I guess I don't make the rules.

It's times like this I start to pay attention to "For sale" signs on houses again. 

1 comment:

Kim said...

Well your situation is extra unique, but I just wanted to say we've soooo been there. It's hard. I love so much that Charlie is able to go to school in our town now... to me, for him, it is worth it that the program is perhaps not as perfect as the one he was in last year. We are still tweaking things, getting him an aid, but it is so icky to have him in school so far away that I felt like it was this whole other life he had that I had not way to be a part of... I couldn't afford the gas to drive even one way, even if it could have worked with nap schedule, etc. Anyway... I feel for you. I hope there is a good answer for you and Asher in all of this.