Coding issues continued

I put a call into Alberta Education and had it returned promptly. The woman really heard my concerns and acknowledged that The Powers That Be still go back and forth between the two codes about which is more appropriate. She explained that if the only issue is DS with nothing else significant going on, that a 43 doesn't fit.

I was also told that I do in fact have the right to approach the school about changing the coding.
I've been emailing back and forth with P's teacher, whom I love and have great respect for.

Teachers response:

Hello Johanna,

At the classroom level we do not have any say on how a child is coded. However, I asked XXXXX (our Early Intervention Supervisor while XXXXXXX is away), and she said that Code 43 would fit for a child in a preschool or kindergarten class diagnosed with Down syndrome and a severe delay. By the time we meet in June, the therapists will have her test scores to see where she fits in terms of mild/moderate or severe delays in different areas. We also will take time to recognize Phoenix's great progress this year. XXXXX will be in attendance at the Transition Meeting for Phoenix in June, so she said that would be a good time to discuss your concerns about the coding.

I hope this is helpful.

Thanks.


 My response to teacher:

XXXX, thank you for responding. I understand that you do not have control over coding.

My concern is that Phoenix is being placed in this separate category simply because of her diagnosis of Down syndrome. And that somehow she is considered "more disabled" than her peers with say Cerebral Palsy, or Autism or even Fragile X not because she is actually "more disabled" or "more severe" than these children, but because of a long history of marginalizing people with DS in particular.

Trisomy 21 is a medical condition. Fragile X is a medical condition. They both have a chromosomal basis which affect all areas of their functioning and development. Why then would they have different codes? It doesn't make sense to me.

There is no doubt in my mind that Phoenix, despite all her progress will come out as "severe". I do not have an issue with severe coding. I really don't. I understand that she has significant delays in comparison to her peers. I just don't want her to be coded in such a way that is not in line with her diagnosis, and that is not the same as other children with medical/chromosomal diagnosises.

When I spoke to someone from Alberta Education I was told that in the absence of signifcant other issues that a code 43 would not be apporpriate for a child with DS (dual diagnosis of autism for example). From what I understand, the two codings come with the same amount of funding, dollar for dollar. Also, that aide support is dependent not on a code of 43, but on the specific needs of the child.

As a special educater, and as a parent with a child with DS, I strongly believe in questioning the status quo. There needs to be reasonable justification for applying a coding/label etc. I don't believe there is justification for all children with DS to be given a code 43, but more specifically, I do not believe it is a suitable code for Phoenix based on how other chromosomal conditions are classified by Alberta Education.

Please feel free to forward this on to XXXXX

 

Reading

Reading is an ongoing goal in this household.

Children with DS are very strong visual learners and are therefor often very successful in learning how to read. I have been working with Phoenix for the last few years on developing reading skills. We started with flash cards, ipad apps and making our own word cards on foam shapes.

Phoenix has been very resistant to putting words together to form sentences, or to identifying words that she already knows in books. I keep on trying, but she has been telling me that she isn't ready so I had to respect that.

Recently, Phoenix has started reading the title of books that she is familiar with and she requests certain books by name.

I have also started making "books" of sight words on foam rectangles that I have stapled together. Those were very successful and Phoenix asks to read them over and over.

Here is one of the books she likes right now. It's a Dr Seuss book called "The Foot Book"



She reads some words, and I read some words. Please remember, this is a child who is not yet in Kindergarten. This progress is wonderful and I couldn't be happier that at 5 she already has a love and appreciation of reading.

Scary Bear

Once in a life time an opportunity to create an enormously successful child deterrent presents itself. I realize that this could fall into the "questionable parenting techniques" category, but when it falls into your lap as if a gift from God, a parent needs to exploit this child's weakness to the best of their ability. I believe this whole heartedly. In fact, I feel like this is one of our most inspired actions as parents.

Thus begins the ongoing saga of Scary Bear. 

When Phoenix was 2, Uncle Greg gave her a singing and moving bear for Christmas. When the bear was turned on it moved side to side while singing "Don't worry, be happy". It's a pretty cute bear and was a thoughtful gift.

 

For whatever reason, Phoenix was TERRIFIED of the bear. She would wave her hands in front of the bear, back up and start crying. 

Some parents would just get rid of a toy that scares their child. Therein lies the mistake. 

We realized that Scary Bear would make the perfect deterrent to keep Phoenix out of places in the house that we didn't want her going. 

When Phoenix started playing in the dryer Scary Bear would make an appearance in the drum of the dryer. 

Then Scary Bear started hiding in the pantry where Phoenix liked to go and dump the baking ingredients. 

By using Scary Bear and moving him to places in the house where children don't belong, we have trained Phoenix to only be in areas we approve of. It's AWESOME. 

Scary Bear is so effective, that we don't even have to pull him out any more. The mere mention of him is enough to stop Phoenix in her tracks. 

Our latest challenge is that Phoenix has been getting up at ungodly hours of the morning and going into her sisters room to wake them up (2 hours before their normal waking time). It makes for a very long day for everyone.
 

Tonight Scary Bear is making an appearance. He is sitting outside Phoenix's door, to see if this is deterent enough to keep her in her room in the morning. 

Scary Bear, don't fail us now!

 

Update: It totally worked. Phoenix woke once, callled for me and stayed in her bedroom for the rest of the night. Another parental win.