Wednesday, 27 May 2015

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.

Tuesday, 26 May 2015

Why do I even care?

I have a bee in my bonnet about special education coding.

This refers to Alberta coding criteria. In Alberta students with DS are given a code 43 - Severe Multiple disability, where autism and FASD get a code 44 - Severe Medical disability.

The funding dollars are the same. It's just a label.

I feel that DS is a medical disability. It is a medical diagnosis and a medical condition - Trisomy 21.
All the disabilities and challenges are a result of the extra 21st chromosome; low muscle tone causes physical delays, speech delays, processing delays.

My feeling is that by being put into the MD category, it is easier to write off our kids, or slide them into an ID category/programming/class. I don't want it. Also, at 5 there is no empirical proof/data (ie IQ test) to demonstrate a cognitive disability at this time.

Just assuming that there is a cognitive disability because duh, Down syndrome, doesn't fly with me. You want to diagnose a learning disability? You need proof. You want to diagnose Autism? You need proof. And if you are going to label my kid as having a cognitive disability you better have some proof other than the presence of an extra chromosome.

 If there is no proof for it, I don't want it applied.

It says "ECS children diagnosed with DS in the most severe cases should be reported under code 43. Most severe cases. What does that even mean? How is that an appropriate code for Phoenix when she is functioning very well in her classroom?

Here are some other examples of conditions that students have which fall into the Severe Medical category:

Fetal Alcohol Spectrum Disorder
Cerebral Palsy
Fragile X
Brain Injury

I think my issue with this is that it is another example of how kids with DS are placed in their own category because of their diagnosis and other peoples preconceived ideas about Down syndrome.

If you look closely at the criteria for code 43, DS doesn't even fit. It says "Two or more non-associated moderate to severe cognitive and/or physical disabilities. Non associated.

ALL of Phoenix's delays are associated with the presence of her extra chromosome. They are ALL associated.

Down syndrome fits quite nicely into the code 44 criteria. She has a medical diagnosis (Trisomy 21). This medical condition creates a significant impact on her ability to function in the school environment and she requires extensive adult assistance and modification to the learning environment in order to benefit from schooling.

So why do I care? I care because this coding feels like the same old "Because it's what we've always done" justification for putting kids like mine in a corner. For marginalizing them and for writing them off.

If my child has a medical condition, what is the justification of placing her in a separate category, when her "functioning level" is similar or better than other kids with other medical diagnoses such as autism, cerebral palsy, brain injury or even other genetic conditions like Fragile X?

I don't get it, and frankly, I won't have it. 

I put a call into Alberta Education today 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. 

Monday, 11 May 2015

Some new spring pictures

Ash in blue, Wren in red





A short little video from Mothers Day. Phoenix picked out a card that had a Best Mom Ever button.
 A button I proudly displayed all day. 
At one point Miss Phoenix decided to read the button out to me. 
It should have read Happiest Mom Ever.