Saturday, 29 September 2012

On potential

One of the things I really perseverated on when we found out that Phoenix had DS was how I perceived her potential to be limited. She was never going to be a doctor or a lawyer. She wasn't going to be able to go to university. She wouldn't get married and have children. I would never be a grandmother.

Potential is an interesting thing. As I look back now, I can see that I had a very narrow view at the time of what potential meant. I mean, there are literally thousands of possible jobs or careers that people can have, and I focus on these two that are out of reach for Phoenix?  And who says that being a doctor or lawyer is the pinnacle of what it means to be successful? I am a teacher and am in my dream job working with disenfranchised (and often behavioural) teens. Who dreams of that? (Me now, but that's beside the point).

And regardless, I don't really believe that potential is unlimited in anyone no matter how many chromosomes they happen to be born with. We are all limited. We have faults. We have things, no matter how hard we try at them, that we simply are not good at. In my instance it is dancing. The song of my life could be called "white, pudgy, Canadian girls can't dance". Seriously. I am that bad. We can't be good at everything so when we tell our kids that they can be anything when they grow up we are lying. Oh, it is a feel good lie to be sure. It's a bit like Santa Claus, or the Easter bunny. We embrace them because they make everyone feel good about themselves. I am not hating on Christmas or Easter here. Nor am I hating on potential. I simply believe that as humans we are not perfect and therefore cannot be unlimited in our potential.

When I really want to look at what potential means I need look no farther than my immediate family. Sister #1 and myself are fraternal twins. Our strengths, gifts and talents are very similar although we have developed these gifts in very different ways.  Communication is a strength for both of us. I focused my writing energy on a philosophy degree and graduate work in special education. I learned to write great papers and to argue convincingly in the academic arena. I also communicate pretty effectively with young people as a teacher. I help anxious learners feel comfortable and insecure learners develop confidence. My job requires me to work with a wide variety of professionals and students and to modify my communication style from person to person.

Sister #1 developed her writing skills through journalism. She communicates both through writing and taking stunning pictures. She tells stories through her images and conveys her own perspective through her photos, writing and editing. Brother's talent is also communicating. He has incredible verbal skills. He's a salesman and he is very good at convincing others to trust him.

Here's where the idea of potential really hits home for me. Sister #1 and myself have worked really hard to build careers we can be proud of. We have developed our skills honestly and have worked consistently to achieve our goals. We have both worked to our potential. Brother has as much potential as we do. He is smart, charismatic, and really has the ability to be great at any number of things. Instead, he has used this potential to take advantage of almost anyone who has had the misfortune of becoming close to him. He has swindled and stolen from friends and family and still to this day attempts to steal customers from my parents' family business while our father deals with medical issues. Yet he has just as much 'potential' as we do.

Which brings me back to Phoenix. She's only two and a half, so we are just beginning to get a glimpse of her gifts and talents. However, it is already clear that Phoenix has an incredible gift that will help her find success: she draws people into her world. She actively seeks out attention from others everywhere we go - and gets it. People love her. Strangers stop us in the street to interact with us. She makes friends in the grocery store, the park, the neighbourhood. This lady stopped her run to interact with Phoenix while we were taking pictures:

She even stopped foot traffic on Yonge Street this summer. One lady in the grocery store last year described it as her 'super power'. Her super power. I like that.

I think the moral of all this is that Phoenix does have potential. We just don't know for what yet. And she is only 2 and a half, so she has a little time left to figure it all out. Just like I do, thank goodness.

Thursday, 27 September 2012

On Acceptance

This is a hard post to write for many, many reasons. Not the least of which is that my feelings about DS have changed so dramatically over the last two and a half years.

When I first heard about our increased odds of DS based upon my 12 week labs I took comfort in the 95% chance that we would end with a typical baby. 95% chance is pretty good right?

If you had a 95% chance of getting a promotion or winning some money in the lottery you'd feel pretty confident about your chances, right? And our 20 week ultra sound looked great! No heart defects, no structural defects and a clear fetal echo 4 weeks later.

 Life was good, my pregnancy was pretty easy and the best part was that we were getting a healthy baby.

I look back and wonder if it would have been easier to accept if I had skipped the 12 week blood work like I had planned to do. Or if Mike hadn't convinced me that our baby did not have DS and that I was just being ridiculous. Or if for one moment I had allowed it to be alright that MY child would have a serious life altering disability that would impact every facet of her being.

You wouldn't know, just by looking at this picture, that the thought of my precious, loved, wanted baby having Down syndrome destroyed me completely.

Although at this point I was still grasping to my final hope that the geneticists, pediatricians, and neonatologists were all wrong and that the karyotype was going to come back showing a perfect 46 chromosomes.

Because if my daughter did have Down syndrome it would mean that there was no hope at all.

I really believed this. And all the crying, begging, bargaining and denial in the world did not change my thinking.

However, the wonderful thing about caring for a baby is that it pulls you out of your head and drags you  into the here and now. It was impossible for me to embrace my sadness while I was caring for Phoenix, because the act of mothering and the feeling of love causes sadness to disappear. The two feelings cannot co-exist in the same space.

For a while I was able to cope by teasing my feelings apart and separating them into corners. Down syndrome was in one corner and my love for my daughter was in the other. I hated DS. I love my daughter. Clear as mud, right?

Now, 2 and a half years into our diagnosis I can finally admit that I do not hate Down syndrome. I don't love it and I would probably still change it if I could - but I don't hate it any more. And incredibly, having fully embraced my sadness and grief for such a long time I have emerged on the other side of it with an amazing feeling of happiness and freedom. Like a heavy burden has been lifted. It is as if I have actually expanded my ability to accept and adapt. This alone is such a gift.

This is my other gift:

Wednesday, 26 September 2012

On early learning...

Anyone who knows me well knows that I research obsessively. I love learning new things and getting my facts and arguments right the first time. Ever since Phoenix was born my topic naturally, was Down syndrome. Being a teacher, it falls in line that I am very interested in early learning experiences for young children and now I have focussed my attention on children with DS. I was reading last year about a mom who had taught her 2.5 year old with DS to sight read. This is an incredibly impressive accomplishment in my eyes. Phoenix was about a year and a half at the time and I remember going into work and announcing that I wanted to teach Phoenix how to read by the age of 3.

Even as the words left my mouth I knew this was an impossible task. How on earth was I going to teach my daughter with DOWN SYNDROME to read by the age of 3 when most regular kids are not reading until kindergarten, grade 1, grade 2 and beyond. At the time I was still feeling competitive. Like I had something to prove. Like I had to prove that Phoenix was great because she could do all of these things so that maybe, maybe it meant I could have hope for her future. As time has moved on the feeling of competition is gone. I just want to teach Phoenix for the pure love of learning and knowing and remembering.

As I researched, I saw that many parents were using ipads to teach their children with DS. Our kids are visual learners and have a very strong capacity for remembering things they see. This makes learning through apps on phones or tablets ideal. Just before Phoe's second birthday Mike and I bought her an ipad. I know this seems like an extravagant gift for a 2 year old, but I personally consider it to be an assistive device. We used $400 worth of gift cards from rewards points on my visa and split the difference in cost. Then I started researching apps to use. There are many, many websites that list apps for special needs kids. I combed them and then picked apps that I thought would be a match for where she is now, and for where she is about to be - I am using the principle of scaffolding for any teachers out there.

It took her a little while to get the hang of the ipad and to be able to use the apps and then switch between the apps she wants independently.

We started out with apps to increase her receptive language - being able to identify and name objects. Grasshopper apps has a number of great (free!) apps that allow you to choose the number of items per page - we started with one so that it said the name of the object or animal and then she had to tap the screen to advance to the next object. Now we use two or three objects on the screen so that she has to tap the right one to move forward. This is a really good way to see their receptive vocabulary grow. Grasshopper apps also has an app called "I Like Books" which has 31 simple books that read aloud to the kids with real life pictures. Young kids love pictures of real things, and the language is simple enough for toddlers to understand.

Some of Phoenix's favourite apps are Meet the vowels, Meet the shapes and Meet the colours. The children have to pick the correct object out of three, with wrong guesses disappearing so the right answer is always picked in the end.

For the alphabet, I like Interactive Alphabet, Alphatots, and Meet the upper case letters flashcards

For early reading I like Little Reader. Little Reader is a free platform for a variety of lessons chunked by category. Each lesson is .99 cents, although there are a few free ones to get you started. We have had this one for 9 months or so and it is a real favourite of Phoenix's.

Many people use flashcards to teach their kids to read sight words. Phoe hates flashcards. She yells "NOOOOOOO" and waves her hand for emphasis every time I try to take them out - but she will tolerate flash card apps on the ipad. Again we really like "Meet the sight words". We have also ordered volume one and two of "Meet the sight words" dvd's through our public library. She is actually picking up some of the words on the videos.

Even with all of the amazing progress Phoenix has made, it still feels like an impossible task to teach her to read by 3. However, at this point I don't really care. I just want her to still be engaged in learning and to have fun doing it.

Tuesday, 25 September 2012

First post

This is my first official post as a blogger. I am 2.5 years into being a mother to a darling daughter who has Down syndrome.

The last two and a half years have prompted the most pain, love, growth and learning of any time of my life. I can honestly say that I am happier now than I have ever been in my life and that my biggest source of joy has come from overcoming the most painful experience of my life: when I discovered that my daughter was born with Down syndrome.

What I have come to realize since Phoenix's birth, is that the human mind is an incredible thing. We can accept almost anything given enough time and perspective. Phoenix having DS was something I couldn't change, as much as I wanted to. But how I thought about her and DS has changed dramatically.

At 2.5 Phoenix continues to surprise me daily. I am pleasantly encouraged every day by her capacity to learn and her funny little personality. Here she is peering at you through the computer screen:

As a teacher, I am a big supporter of early learning. This summer I started a big push to teach shapes, colors and the letters of the alphabet. Surprisingly, she learned them all within a very short time period. Next came numbers. Now we are starting on sight words. I'm hoping that by the time she goes to early intervention pre-school next year that Phoenix is the most well prepared 3 year old they have every had the pleasure of teaching.