Tuesday, 28 April 2015

Being smart

"My niece was born premature, but she is smart as a whip"

"They told my friend that her son was going to have Down syndrome, but he was born totally normal and is just so smart"

"My daughter struggles to gain weight, but is seriously smart"

There is a big emphasis in North American society about being smart, and as a mother with a child with Down syndrome, I pick up on these sentiments a lot. More now than before Phoenix, that's for sure.

And while there is nothing wrong with being smart, it's the over emphasis on it as a source of pride that rubs me the wrong way.

I used to proclaim Phoenix's accomplishments, as if they were badges of merit. Sitting at 9 months, walking at 22 months, good speech and sign language, sight reading at 3. Things she's earned that become a collection of milestones that make her life worthwhile. Accomplishments that said "See? Look what she can do, even with DS!"

There is a mindset that can develop as a parent with a child with an intellectual disability. Where we feel that we need to defend their existence. Where we need to justify why our child's life has meaning, and value, and worth - even though they aren't smart, or have medical conditions, or have surgeries.  That without the presence of the intellectual disability people would not wonder if their lives held value or worth. In essence, if their life was worth living.

If I was to be brutally honest with myself, I would admit that I used to think like this too. I thought, "life is hard enough without having to live with a cognitive disability". I used to think that I would definitely, 100%, terminate a pregnancy with a child with DS. No question.

I didn't bank on the faith or support of my boyfriend (now husband), who, despite our risk of DS, felt in his heart that this baby was loved, and wanted, and was going to be good, no matter the presence of DS or not. That whatever happened, it would be ok.

It wasn't ok for me. It wasn't ok for a long time. But it is now. Turns out, I had a lot of work to do on myself, my preconceived ideas, my beliefs, my values and my understanding of worth. Of what constitutes a life worth living. I had to reconsider how important it was to be smart when balanced with all kinds of other attributes that humans possess:compassion, joy, kindness, understanding, affection, acceptance. Attributes that I truly want to pass on to all my children, attributes which possess an importance that moves beyond being smart.

I have come to see that I don't need to defend Phoenix's life. She has brought so much to just my world, that it is hard to describe it fully. First and foremost, this child made me a mother. She has made me grow more than a typical child would have - and for that I am thankful. Because of her, I am a more thoughtful person, more compassionate, more understanding, more contemplative. I have a wider view of the world, including a better understanding of questions like Why am I here? What is my purpose? What is important in life? What makes my life rich?

It doesn't matter to me how smart my children are. It matters how hard they try, that they persevere, that they get back up and try again if they have failed. It matters that they treat others with understanding, compassion, acceptance and reverence. It matters if they are kind, forgiving and loving. The world will not be better for our children if it is filled with people who are smart. It will be better if it is filled with people who are kind. That's what matters folks.

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".


Tuesday, 7 April 2015

Why I cater to my picky eater

As a parent, it never fails that our children's eating habits come up as a topic of conversation. A poster on one of my online moms groups recently asked what other moms fed their kids for breakfast. Other moms wrote about strawberries and egg muffins, omelettes and oatmeal. Me? I wrote that my kid ate a granola bar and was too embarrassed to mention that it was a chocolate covered granola bar followed by pretzels.

That's because I have a child with long standing eating issues. Issues that make me silently roll my eyes when other moms say things like "I don't cater to my kids pickiness" or "I make one meal and they can eat it or starve" and the best line ever "They'll eat when they’re hungry".

I know that moms who say these things don't understand the scope of some children's food aversions and fears and they definitely have never experienced them first hand.

Phoenix's eating issues have been present from birth. Even as a newborn she refused to breastfeed and instead preferred the ease of the bottle. Purees were alright, but mixed foods with some smooth bits and some lumps were a no go. Although we introduced a variety of foods and textures, little progress was made in her eating.

We consulted with dieticians and occupational therapists, sometimes on a weekly basis. We tried a variety of foods, flavours and textures and finally found success with hard munchables like pretzels, rice crisps and veggie straws. We still consider veggie straws vegetables in this house. Vanilla yogurt has always been a safe food and continues to be a favourite to this day

As Phoenix grew it became clear that her issues around eating weren't limited to just skills. Phoenix has a deep and profound distrust and suspicion of food. Even at 5 years old she scrutinizes each bite of food carefully, as if an errant piece of vegetable may contain the poison that will finally kill her.

As much as we would like our child to eat a variety of foods, we consider 1 fruit or vegetable a day a victory.

We joke that Phoenix is growing on a solid diet of air and sunshine. But she is growing and has followed her same growth and weight curve for a number of years now. She's a fairly slim child but she always has energy to play and learn and her paediatrician isn't worried about her growth.

I frequently hear other parents say "I just make them eat" and I always wonder: How? How do you make a child eat who won't?

We have tried putting food in front of her and not giving her anything else until she eats what's on her plate. She will happily go without eating unless it is a food she deems acceptable.

Punishment also doesn't work for helping her accept new foods. It actually makes the food refusal worse by associating eating time with tears, frustration, anger and unhappiness. We just cannot in good conscience make every mealtime a torturous experience for her by expecting her to eat like other children. There comes a time where you have to focus on the success of the child rather than societies expectations of "healthy" eating.

The most success we have seen has been with bribery and other kinds of positive reinforcement. Her favourite food is ice cream cake, so in order for her to earn a piece she needs to eat a small plate of dinner. Lately we have seen a higher acceptance rate with the promise of ice cream cake, but it's not a guarantee. We don't mind if she eats a piece every day because it's a serving of dairy and she is still on the thin side.

We also take a lot of time to praise her when she eats challenging foods or tries previously refused foods. Part of changing her food refusal behaviour is changing her self-perception of herself as an eater. We want her to see herself as a good eater who can try new foods - just like I try to encourage my students to think of themselves as good learners who can tackle new topics. The more we perceive ourselves as being competent, the more competent we become because we are not afraid to take on new challenges.

I cook regular meals for the rest of the family, including our 16 month old twins who are excellent eaters. If I know that the meal is something Phoenix won't eat, I gladly make a small portion of something she will eat, while encouraging her to try what the rest of us have. I do this because we need to continue to make mealtime a happy event for everyone and because my child needs to feel that we are working with her to support her (painfully slow) growth.

We also celebrate the successes as they come. Today Phoenix tried a grilled cheese sandwich. Last week she tried banana. The grilled cheese was swallowed and the banana was spit out. It's all progress. And when I look back over the last 3 years, Phoenix has grown from eating maybe 6 foods including 1 fruit or vegetable, to eating a few vegetables, almost any protein, a variety of carbs and a few dairy products. That's a HUGE gain and is a testament to the fact that our approach is working.

So that is why I cater to my picky eater; because it is the only way that we have seen progress in her fear of food and eating. My long term goal is to have her eat a variety of foods and for her to learn how to create a balanced diet. But for some kids, like Phoenix, you need to give them time and support to do that.

                                              Here is Phoenix, enjoying her mealtime.