Friday, 29 May 2015

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.


 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



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.

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 my daughters school board students with DS are given a code 43 - Severe Multiple disability, where autism and FASD get a code 44 - Severe Medical disability. In a neighbouring school board students are given a code 44.

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.


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.

Friday, 8 May 2015

Mothers Day

Mothers Day is coming this Sunday and I get to spend the day with my precious children.

In fact, today marks 2 years to the day that we went to the fertility clinic to attempt our 3rd iui in the hopes of having another baby and a sibling for Phoenix. It the day we conceived our triplets of whom 2 survived.

I'm reminded, because today was also the day that we met our friend and brilliant photographer Lisa Pedersen at a local park to take pictures of Phoenix and of us together. It was a magical day, for many reasons.

First, I got to showcase Phoenix with the beauty I saw in her every day.

This is important to me, that others can see beyond her little bald head, and almond shaped eyes, and small ears and her slender little frame, and see Phoenix, not Down syndrome.

Because Phoenix is a loving child who makes my life better, and richer, every single day. Down syndrome is a word full of connotations, negative assumptions, fear and pity.

Because this child has beauty that radiates from within. 
A beauty that is tender, and gracious. 
A beauty that is all her own.

This child, this child is not fear and she is not pity. She has a heart and soul, and hopes and dreams. This child wants to be the special helper at school every day. She loves to greet her friends and to get in trouble with the boys in her class for giggling and being off topic.

This child likes to pick up and hoard all of her favourite toys so that her sisters cannot play with them - but fails, because a 5 year old can hold only so many toys in her hands at once.

This child is our pride and joy and makes our hearts soar.

Sometimes I wonder how full a heart can be. As it happens, it is three children full for me.

Even with her sisters, whom also have firm places in my heart, the love is not quite as fierce for them. It is joyful, there is no question of that; but it is not as protective. 

These children do not have quite as many challenges which will lay before them which will shape their experience of being in the world. They will not be judged in the same way that Phoenix will be. 

And even though people may see twin before they see Ash and Wren, there are not the same negative thoughts, feelings and perceptions about twin as there are about Down syndrome. 

Ash and Wren will be judged and classified. We all are. Mother, wife, woman, Canadian, brunette. But the classifications placed on them will not bar  them from jobs, or schools, or the opportunity to join their peers in community activities because they aren't the right fit or they'll need too much support or we don't have the funding/experience/qualifications to accept your child

Ash and Wren will have a completely different experience of being in the world. There will be challenges and hardships for them too. Of this there is no doubt, but my strong feeling is that their lives will be easier.

Which is why I can acknowledge the difference in how I love them - because in the end they will need me for different reasons. 

Phoenix will need me to be more fierce, to stand taller, to speak louder; to be her advocate, to be her voice, to help her meet her needs. 

All of this I do willingly, freely, of my whole heart - because at the end of it all, I get to be a mother. Certainly not in the way I had pictured, or hoped for, but in a way that is mine.