Thursday, 23 April 2015

How far from normal are we?

The short answer to that question is "I don't know". I don't know how far from normal we are. Phoenix is our first child, and although I see the other kids from her class, I don't know what it is to live with them, parent them or love them.

But I know what it is to love Phoenix, and for me, it is just so beautiful. 

One of the words that I would use to describe Phoenix is gracious.  She is a gracious child. So although it isn't wonderful to be changing a 5 year olds diapers, we are totally mollified by the fact that Phoenix thanks us every time we do. In fact, Phoenix thanks us for everything we do to help her. Whether it is helping her get dressed or putting on her shoes, reading her a book or helping her tidy up: she always thanks us. Every day. 

And I wonder: how far from normal is that?

Having the twins and seeing their development is just so fascinating for me. I have such an appreciation for the way their little minds work. They are very observant children. They are always watching us as well as Phoenix and they seem to learn just by observing how we do things.

Last night I gave everyone a piece of my birthday cake, and I gave Wren and Ash a desert fork to try to use. They've tried a fork a few times and at 16 months, they try to stab their food with it, but largely aren't  successful. No big deal really, because I actually have no idea when kids start to use cutlery regularly. It took Phoenix a long time to use a fork and spoon well, because we went for so long feeding her because of her food refusal.

Wren took her fork, manipulated it to spear the cake and managed to turn the fork to put it into her mouth straight on. It was incredible to watch - the ease of it that it is. Is this normal?

Other aspects of their development are just as interesting to watch. Their language is developing beautifully - especially considering that they are only 14 months adjusted age. They both repeat words back to me, are learning sign language and Ash in particular is using spontaneous words all the time. It's kind of mind blowing to see how easily this comes to them - when I also see how hard Phoenix works to form and say words - despite her strong language skills (for DS).

The girls have started a new routine of playing on the back deck with their new play house and the water table. They go in and out, sit at the small table, pretend to open the mailbox and distribute mail and pretend to cook in the kitchen. Phoenix is leading the pretend play, and her sisters are following along. How far from normal is this?

There will come a time in the future, where her sisters will overtake the development of Phoenix. That's ok, because development is not a competition. It is a journey, one that we are all on. I am still developing, learning, growing. Becoming the best me that I can be in each particular moment. Just like Phoenix is. Just like Ash and Wren are. Just like we all are. How far from normal is that?



Tuesday, 21 April 2015

Why is Phoenix bald?

Why is Phoenix bald?

Phoenix has a condition called Alopecia.  Alopecia falls under the heading of autoimmune conditions, which means that for some unknown reason the body attacks itself. Some other better known autoimmune conditions are rheumatoid arthritis, Chrohn's disease, type 1 diabetes and celiac disease. Alopecia happens when the immune system attacks the hair follicles, preventing them from growing. There are a few types of Alopecia; the type Phoenix has is called totalis, meaning whole head. So she does happen to have her eyebrows and eye lashes still, but no hair on her head. From time to time it looks as if hair is beginning to grow on her head, but it just seems to sprout and then fall out again.

Alopecia is not contagious. You can't catch it and it is highly unlikely that the twins will develop it. It's much more uncommon than Down syndrome, and it is very likely that even if the children at her school have met a person with DS, they have probably never seen a person who has DS who is bald.

I would say that one of my sources of anxiety about Phoenix being out in the world is being made fun of because of her hair loss. I think because of the growing inclusion of children with DS in community schools that it is unlikely that she will be made fun of because of Down syndrome. I know this won't be the case with her baldness.

How do I know this? Because I have seen children laugh and point at her - children in the playground and children at the pool. We never get questions about Phoenix looking "different" EXCEPT with her hair. It's frustrating because there is literally NOTHING that can be done to make her hair grow.

She is such a pretty little girl, and this is something that I feel may affect her self perception and self esteem in the future. In these few instances I have witnessed, Phoenix seems to be unaware of what has happened. She is very willing to tell us if her feelings are hurt, so I genuinely feel that she hasn't been affected thus far. But the day IS coming when it will hurt her feelings - and for that I have been feeling sad lately. It's a bit of a foreign feeling for me now. I haven't felt sad about Phoenix for a very long time, but this sadness if very close to the surface right now.

I contacted an Alopecia organization in the U.S. last week who will be sending me information and books to give to our school library. I'm hoping that by opening up the conversation about Alopecia, that we will prevent some of the troubles that I forsee. I also cannot be there to fight her battles when I give her up to the school system to spend her days. I just have to trust that people are kind at heart and that others are strong enough to step up if they hear anything negative being said.

Monday, 20 April 2015

Playing Together

Now that the twins are getting older, it's becoming possible for them to start playing with Phoenix.

Right now Phoenix invites them into her room to play doll house and to join in the fun of emptying her shelves of toys and her drawers of clothes. It's lovely that she wants her sisters in her room, but the results are extremely messy and involve a lot of picking up on my part. 

Phoenix is also quite possessive of "her" things. We are trying to limit the amount of toys which are actually hers and emphasize that they are mine but that I share them with her and the sisters. 


This ball drop toy was a huge hit with Phoenix when she was smaller. The twins are finally old enough to start teaching them how to use toys in a more effective way, so the ball drop is a great toy to start with. 

Now that spring is upon us I've also been on the hunt for cheap, used backyard toys that the kids can all use together. I found this beauty in a local second hand shop. 






I've also found a toy playhouse that I picked up this weekend. This too I purchased from another family for less than half the original price. I like to give my kids nice things to play with, I would just prefer not to have to pay retail prices to do this and in truth, I love getting a bargain. Here is Phoenix playing with the house. She calls it the "doll house".