Sunday, 29 June 2014

If you're happy and you know it

Phoenix has finished off her first year of preschool! I'm a little sad for her that her structured activities have ended for the next 2 months, but happy that we aren't ruled by her schedule for a while. We have an amazing developmental aide working with her 3 afternoons a week, so she isn't totally work free for the summer. Jen is working on a variety of skills with Phoenix including eating with utensils. Phoenix seems to think that the way the world works is that parents feed their kids, so we are trying to disabuse her of this notion and encourage her to feed herself. It's slow work with a lot of bribery. "Do you want to watch your iPad? Then take a bite with your fork." Thank goodness, it frequently works. We are also getting her to try a wider variety of foods, with bribery as well. Baby steps, but definitely steps in the right direction.

Phoenix was treated for an infection recently, and right after she was, something incredible started to happen. Her hair started to grow back. She's currently sporting about 8-10 patches of hair on her head that is growing. With her type of alopecia, this scenario is really unlikely. I had pretty much resigned myself to the fact that she would be bald her entire life. But who knows? Maybe it will grow back?

We have also gotten Phoenix to start wearing her glasses more often. She was wearing them in school regularly, so now it isn't as difficult to get them on her for large portions of the day. And she looks REALLY cute in them.


One thing that is unique yet concerning about Phoenix is her complete inability to admit she feels anything other than happy. She can be bawling her eyes out and if asked if she is sad will shake her head and say and sign "no, happy". It's funny, because she is obviously not happy, but concerning because I hope she doesn't grow up suppressing her emotions. It's not something we taught her to do either. She hates to see others upset, hates it when her sisters cry or her friends are sad, and doesn't like to be sad herself (even though she often does feel sad and will cry). I'm not sure what to do about it. I don't want to push her to say something she doesn't want to say, but I also don't want her to suppress how she feels. I think this is something that we are just going to have to keep our eye on.

Thursday, 5 June 2014

Keep your eye on the prize

We received Phoenix's end of year IPP and Mike read it to me over the phone (I am away visiting my mother in Toronto).

I've been involved in many, many IPP meetings through the years as a teacher for at risk youth. Most of the time the goals and results are not a surprise to the youth or their parents and the meetings are just a formality. 

With a kid with DS it's a little different as so many more areas are looked at (OT, PT, SLP) and academic knowledge. I've heard from other parents how challenging and upsetting these meetings are because the focus is often on the deficits, especially in comparison to typical peers. 

So Mike read me her scores over the phone. There were some 1%'s and some 8%'s and and even a -4 in something, although I can't remember what. 

And my reaction surprised me. I laughed. Loudly, and for a long time, because the numbers are so at odds with my perception of Phoenix and her development. 

Because we don't compare her to her typical peers (why would we? She's not typical) we just don't look at her in a negative way. Ever. 

We don't focus on deficits. We look at areas that we want to work on (lately articulation and feeding herself with utensils, both of which she is making gains in) and we go from there. 

I understand the need to make these comparisons because her funding and spot in the program need to be justified. 
However, it's not really fair to compare Phoenix to other typical children her age. She not typical. Typical kids don't have low muscle tone which affect their fine and gross motor skills as well as their speech. Typical children don't have the same challenges. Typical don't attempt to learn a skill (like jumping) over and over every single day, with a huge smile on their face and then try again because it is fun to do so. 

Because we have taken the mindset we have, and because we are great at supporting each others resiliency, these meetings don't phase us. I'm going to listen in to tomorrow's actual meeting so I make sure that Phoenix's strengths and in particular, her strong academic knowledge, are noted and touched upon. Because these meetings can't be all doom and gloom and focusing on what she can't do. They need to reflect the whole child. What she is good at and what she needs to work on.

Phoenix recently started using the big kid swing. She hasn't got the hang of pumping yet, but she is stable when I push her. And she loves swinging.
 

So to parents that do have difficulty with these meetings, a word to the wise. Keep your eye on the prize ie just remember that you have a fantastic kid.

We don't look at our friends and loved ones and judge their worth in terms of how well they perform on standardized tests. Why would you judge the worth of your child that way?

Monday, 28 April 2014

This little light of mine

Now that I am at home on my maternity leave with the twins, I am spending more time with Phoenix than I have in a long time. The more time I spend with her, the more I am enjoying the growth and independence that she is slowly gaining for herself. 

We haven't had the regression or acting out that I had been anticipating since her sisters have come home. In fact, Phoenix has accepted her sisters beautifully. When I am holding one of the babies, Phoenix will hug and kiss her, then tell me it is my turn to do so. We take turns hugging and kissing the babies while I manage to steal hugs and kisses from Phoenix too. I am all too aware that the window for hugs and kisses from your children closes quickly, so I get in as many as I can while Phoenix is still a willing participant. 

Phoenix had been a joy lately. She is communicating her wants (playdo and painting are her most recent loves) and we get to spend quality one on one time pretty much every day. Her behaviour is excellent and she has listened like a pro at some recent appointments that have been long and boring. I've been so proud   to be seen with this sweet, sensitive, loving, well-behaved child. There is a light there, inside of Phoenix and lately it is shining so bright. Let it shine, let it shine, let it shine.