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?

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. 

Long time no talk!

I know it has been a reaaaaally long time since I have updated. But what can I say, I have 4 month old twins and life is sooooooo busy. Whenever I have a free moment to myself I am catching up on sleep, housework or BBC.

        My Beautiful Phoenix

Brief update:

Phoenix is doing great! She is 4 and we had a small party with some of our DS families at a local gym. It was "lead" by some of the staff but really involved a lot of free play in the gym with props, balls, scarves, scooters and hoops. The kids had a super fun time, especially the birthday girl who kept trying to escape to the other half of the gym where basketball practise was happening.

Phoenix continues to do well in her preschool and has been in the middle of a language progression: moving from 1-2 word sentences to 2-3 word sentences. I get a lot of "Thank you Mom" and "Ok Mom" and describing things with the colour and the object. It's wonderful to see her continue to make progress and be able to express herself more fully.

The twins are also doing well and are only a lb apart now in weight. Ash is 10lbs 13 oz and Wren exactly 1 lb more. At one point there was a 2 lb spread after Ash had been hospitalized for NEC and had to be off food for a week. But she has definitely rebounded and is catching up to her sister. The just went for their 5th round of RSV antibodies yesterday to prevent them from getting sick. As preemies they are more susceptible to respiratory illnesses and more likely to develop pneumonia and to be hospitalized if they do get sick. So any added protection is a bonus. They are 4 months old today, but we and the doctors still treat them like 2 month old babies - which is what they would have been if they had made it to their due date. This is called their adjusted age. They are doing all the things they should be doing for 2 months so we aren't worried about their development. They are bright, look around the room, have started to coo and smile at people and bat at their toys on their play mat. Life is good folks. Life is good.

 Wren sleeping peacefully.

Ash yawning

Truly identical, no?