Taking Risks

Taking risks is a personality trait that is seen (or not seen) from a very young age. Children who are risk takers will try new skills over and over until they perfect it. Observers will watch a new skill, internalize it, then attempt it when they can perform it accurately. One isn't better than the other, it's just something to be aware of.

Phoenix is a risk taker. She'll attempt things over and over, even if the attempt isn't perfect. In many ways, this is a great skill to have. It means she'll attempt new words even if she can't say them exactly right. It means she'll try to climb new play structures (sometimes with support).

Lately Phoenix has been becoming interested in walking down the stairs. We took the baby gates off months ago because she was so competent crawling up and down them safely. However, her two friends at her day home walk up and down the stairs independently and Phoenix is trying to model their behaviour. So for the last few weeks we have offered Phoe our hand when she walks down the stairs so she can practise walking down them forward ( rather than crawling down backwards). This morning she took one step down on her own before I caught her and asked her to go back up to the playroom. This afternoon I was making dinner down stairs while Phoe played with her iPad upstairs in the playroom.

She was halfway down the stairs before I realized that she was walking down herself.

It's a good thing I am a behaviour teacher, because I was able to keep my cool and rush over to hold her hand the rest of the way down.

It is wonderful that she is learning a new skill and practising it until she really gets it. But man, is it ever scary to let your child take risks like that. I mean, where's the line between taking risks and breaking your neck?

I want her to take chances in her learning and to not be afraid to fail. I see the most progress in my students who are able to take risks with their learning. It is such a great quality to have in a learner and I am thrilled that Phoenix has naturally cultivated this. But where as a parent do you draw the line? I would never have let her walk down those stairs on her own, but she showed me that, at least tonight, she was able to do it.

I think I might have to give her more opportunities to show me what she can do, but with the safety of mom right in front of her.

My favorite new Phoenixisms

Phoenix is trucking along in her development recently. Our trips to the gymboree play gym have been so successful that she recently learned how to climb out of her crib, necessitating a quick transformation of her crib into a day bed. Luckily, she adjusted to the change quite easily and she remains in her bed all night until I go get her in the morning.

It's so funny when you start to hear your own linguistic idiosyncrasies popping out of your child's mouth. For a long time, Phoenix repeated a single word back to us in response to a question or comment. "Phoenix, do you want to watch Singing Time?" And she would reply "Time." This is a totally normal developmental stage in terms of speech that all kids move through. Then Phoenix started using "OK!" a few months ago in response to questions we pose to her. Her new response is "Sure!" when we make a request now.

"Phoenix, can we put on your shoes?" "Sure!"

"Phoenix it is time to get dressed." "Sure!"

Not surprisingly, "Sure" and "OK" are words I use frequently in my day to day life. Even my students make fun of me for my over use of OK.

The other new Phoenixism that I am loving is her unique attempt at "Thank You". Whenever we say thank you to her, the response we get is "Q!" as in "than - kyou". Tee hee. It's so adorable, I don't even try to correct her. Not ever.

We've also been trying to get her to put two words together more consistently. I do a lot of cuing with her to help with this such as "Bye" pause "Mom". She repeats each word separately, but we are working on getting the pause in between the two words shorter and shorter. It's gotten cold here in the last month, so all on her own she has been putting together "Cold, Brrr" while making the sign for cold. It's very sweet and I can't help but repeat it after her it is so cute.

Here are some new photos from the last week.

 We decorated the tree this week. Phoenix keeps on taking the ornaments on and off so I bought her some soft toy ornaments that she can place on the tree and take them back off as many times as she wants.

Here's Phoenix about 3 minutes before she started to eat the play dough. She'll eat play dough but not vegetables. Sigh.

And here she is enjoying pea butter (like peanut butter but made with peas) with pretzels. Then just eating the pea butter from a spoon. Then off of my fingers. What can I say, I am a sucker for getting her to eat anyway she'll do it.

The Importance of Community

Last night I had the pleasure of meeting up with three other families who have children with DS. We all met when our kids were very young and our kids were all born within 4 months of each other.

As families we represent a wide variety of demographics. We have a stay at home mom, some working moms, a single mom, a common law couple and two married couples. Some of us have only our child with DS and some have other children too. One family uses a nanny, and one goes to day home. Three of the families use developmental aides and one uses an extra day home spot - all covered by the state to help our kids reach their full potential. Three of the families also make use of a DS specific preschool class offered in the city.

We all have such a wide variety of experiences and backgrounds; of philosophies and parenting styles and of feelings about our children and Down syndrome. And we all have this wonderful bond of support and delight for our children's accomplishments.

"Want to see a video of A standing up in the middle of the room over and over?" asked one mom (bursting with pride). And we all watched and celebrated the accomplishment of her daughter, knowing how big these milestones are to parents like us. We admired G's rad new walking skills, and B's take charge attitude with her younger sister. And I showed off Phoe's new verbal skills.

We talked about a lot of different topics. Our lives, our partners, our kids. Views on potty training, on vitamin therapy, on which preschool we are going to send our kids to etc, etc. And the wonderful thing about this group of friends is that we can talk about these things, and our views and ideas, without fear of judgement. Because we all are aware that there is no one right way of doing things.

Although I am now at peace with DS, I am so thankful that I have this posse of families who are moving with me through this experience. Who understand the joy, the frustrations, the celebrations and the different way we experience raising children. Whose lives I would never be linked with but for this tiny extra piece of genetic material.

I hope to always be in touch with this amazing group of families both for me and for Phoenix. Because I want her to grow up with other children who understand what it is to have Down syndrome. Just like I appreciate having this community of families who "get it", I want Phoenix to grow up with other children who have challenges, and differences, and unique genetic makeups who "get" her. Of course I want her to have other friends and families whose lives we share too. But just like ex-pats who link and group together in foreign countries to experience 'home', I want Phoenix to have her group of friends who share this common bond.

And a pic of Phoenix swinging in the snow, because that's what we do in November in the North.

Limitless

"I expect my son to go to college, get married and live in his own house."

"The future is unlimited for my daughter."

"No one is going to put limits on my child."

When I first received the news that my daughter has DS, I read a lot of online forums. I still do actually. And I find my reaction to statements like these hasn't really changed much in the last two and a half years. I read these sentences and think these people must live in rainbow and unicorn land because they are not in touch with reality.

Don't get me wrong. I think it is important to have expectations for your children. I clearly have confidence in Phoenix's ability to learn and grow or I wouldn't spend so much time and energy on early learning activities. I see her spark and joie de vivre and feel hopeful for her future. But I wonder if there is a basic misunderstanding that having high expectations automatically translates into these expectations coming to fruition.

My parents expected all of their children to go to university. As long as I can remember, post secondary education was always the implied end to our educational career. My sister and I did in fact graduate from university and we both have found success in our particular fields. My brother dropped out of high school, dropped out of college and ended up as a morally bankrupt individual. How can this be, you ask? Your parents had such high expectations!

We are all limited in some way. Some of us more than others. My daughter will have more challenges and limits than many other children. It will take longer for her to learn and process information. It will take longer for her body to learn how to move. It will take longer for her mouth to learn to make different sounds.

She will be limited.

I can't understand how it hurts the DS community to admit that our children will be limited. It's the reality of having extra genetic material. It causes complications, and challenges and limits. Our children are different. And that's ok.

My brother is a limited person. It's not because my parents put limits on him. It's not because society put limits on him. It's because having high expectations of someone does not automatically cause them to be successful. There is not necessarily causation here.

There are all kinds of other factors that influence people's long term outcomes. Personality, family support, learning styles, socio-economic status, parental education levels, parenting styles, school community, access to resources, peer relationships, and the presence of disabilities all impact the outcomes of children and youth. In fact, the interplay of factors that do influence outcomes is very, very complex. It is simplistic to assert that having high expectations of our children translates to outcomes such as attending university or college. Having high expectations won't cause this to happen. Having a strong academic aptitude as well as a myriad of other factors might allow it.

Given that 99% of people with DS have intellectual disabilities, it is extremely unlikely that Phoenix will go to university. It's not impossible, it's just not likely.

And you know what? That's ok.

I took a graduate course in Spec Ed while I was pregnant with Phoenix. The professor asked the class "Why aren't more high school graduates applying to go to university?" I responded "You are making an assumption that going to university is the pinnacle of what it means to be successful." I think the question should be "How do we let young people know that there are many routes to success and that going to university is just one of them?"

Phoenix is limited. She has a disability that will likely make many aspects of her life challenging. It's ok to admit that.

I can hold this view and still see a bright future for her.

Snow Day

I haven't felt the calling to write much lately. Work and life have been very busy as has my wonderful little toddler. I took a snow day with Phoenix last week and took some pics while out shovelling and playing with little Miss Phoe. Here are a few of them.

 Here Phoenix is about to sign and say "cooooold". Even totally bundled up she always lets us know the temperature.

Here we have walked to the mailbox. One of Phoenix's chores is to walk to the mailbox with me and check for mail. I lift her up to look in the box and if there is mail she reaches in and pulls it out for me.

I lived with young parents for a while in B.C. when I took a break from teaching. I was always so impressed with their parenting skills with their son and really learned from their example. They always included their son in all the tasks of the house, but modified for his level. Their ability to include him lead him to feel competent and self assured and really cut down on behaviour problems.

I try to parent Phoenix in a similar way. I find tasks that she can do and always reinforce that she is 'helping' mom. It's nice to feel that you can help others, and not always be the one asking for help.

It Must be a Mild Case

"It looks like she has a mild case"

"You can hardly tell, it must be mild"

"She hardly looks affected at all"

These are actual comments I have heard from people I know or have met. Luckily, I am not too caught up on having people speak correctly about Down syndrome, because if I was I would have flown off the handle many, many times in the last 2 years.

In case you didn't know, these are ridiculous statements. Down syndrome doesn't work like that.  It's like trying to assert that a woman has a mild case of pregnancy. It just doesn't happen that way.

I don't get upset at people because I know that they are trying to pay Phoenix and I a compliment. They are trying to say "wow, your kid is doing really great" or "your kid is so pretty", but they don't really know how. Part of me thinks that sometimes this is because people frequently aren't able to find the right words to describe what they want to say. Another part of me thinks the statements come from a very negative perception of DS. Because she could only be pretty if it was a mild case. Or she could only be bright and charming if it was a mild case.

I don't fault them for these perceptions. That was likely me 3 years ago. I wouldn't have put "smart" or "pretty" in the same sentence with "Down syndrome". But I do now.

I'm sure all parents do this, but I spent the better part of today looking at my child in wonder and admiring how charming, lovely and engaging she is. And reflecting on how much she improves my life and has helped to sharpen my focus. These are thoughts I never would have imagine myself having after our "why your kid is crappy" talk with the geneticist.

Perspective.

Here's the reality when it comes to DS. You either have DS or you don't.

There is no such thing as a mild case. Just like with regular kids, there is a wide variety or strengths and challenges that each child faces. Some kids with DS have more challenges, some have less. Some kids have more of the facial features, some have less - but there are no mild cases. All of these kids have about the most 'severe' case you can get because they have the extra chromosome in every one of their cells.

Phoenix has a 'severe' case of Down syndrome and look at how awesome she is doing.

Makes you think, doesn't it?

That's Just How We Roll - part 2

The gross motor work we do engage in is often at a local play gym called Gymboree. Gymboree has levelled play gym and music activities, usually in 30 minute or 45 minute sessions. Phoenix takes the 24 month to 28 month class, so she is likely the oldest in the class. The instructor is wonderful as are the other kids and parents. No one has ever said anything about Phoenix being different, and they all include her just like they would any other child.

What I especially like about this class is that it is a regular type of activity that any family could do. It isn't targeted towards kids with DS. It's not run by therapists. It doesn't 'feel' like therapy. And to Phoenix it isn't therapy. It is having fun, at her own pace and her own ability. I brought my camera today to take pics, so here are a few.

The other great aspect of Gymboree is that there is a partnership between this company and our local Down Syndrome Society, so we pay 50% off of the regular monthly fee. This is wonderful for lots of different reasons, but mostly because if I miss a day because I am busy or Phoe is not feeling well or the roads are bad I don't feel guilty about wasting money. We could make up classes if I could find the time during the week, but that usually isn't possible. Maybe we'll pick up a few extra classes over the Christmas holidays while I am home with her for 2 weeks.

That's Just How We Roll

 I've already told you that we don't do a lot of formal therapy in this household. So when authentic opportunities arise that allow Phoenix to rock her gross motor skills, we take advantage of them.  Like here for instance. Phoenix was on her step stool, getting ready for me to brush her teeth, when she decided that she wanted to climb the vanity. Because I wanted to see what she could do I let her. 

And then grabbed the camera.

Working on fine motor skills.

Working on self help skills by trying to open the medicine cabinet and turn the light off and on. 

Climbing in the bathroom. That's just how we roll.

31 of 31

Whew! I made it. And it is a good thing that today is the 31st because I have nothing. Nada, rein. nothing to write about. Today I am all written out. I'm even almost out of the beautiful pics that Megan Hirons Mahon took for me this summer. But not quite yet, so I might just photo bomb you and call it a day.

This is Phoenix 'working' at an Early Years Centre this summer.

Being cute

Why, hello there.

Thank you to everyone who kept up with me this month. I'll still be writing this blog, but I don't plan to write everyday and now that the school year is ramping up my coursework and marking won't allow it either.

And thank you to all the people who have sent me encouraging notes and messages. It means a lot to know that I am supported along this road. Phoenix has a very large 'family' in this world and I am eternally grateful.

October Update

We had a few minutes outside last night.

Yes, that is snow in the background.

Yes, it isn't quite Halloween yet.

I'd also like to report on how the feeding is going. Earlier this month we started to reduce the amount of pediasure sure we are supplementing with. I'm happy to let you know that her appetite seems to be improving and she is eating more food by mouth. She still relies heavily on crunchy carbohydrates, but I manage to get in a fruit or vegetable now and then. We meet with the dietitian Fri to see how our latest 3 day food record holds up.

Phoenix is getting better at repeating back two word sentences to me when prompted. I am working at getting her to say one word and then a second. "Mom, down" or "go,  down" for example. Sometimes I can get her to sign/say "more, crackers, please". She seems to be getting the hang of it.

Last night she even asked for "more, carrots". Which is HUGE because she never asks for more vegetables. It was AWESOME.

And we are getting her to eat a multivitamin. There is a huge amount of cheering involved to get her to keep it in her mouth and chew it. And then she cheers and claps for herself when she is finished with it.

Progress. We are making progress.

If I Had a Magic Wand

If you had a magic wand, and you could go back and take out your child's extra chromosome, would you?

I have seen this question a few times since Phoenix was born. Surprisingly, many parents say they would not. These parents think that their children are prefect the way they are. That they have come to love and appreciate their child exactly the way they were designed and they wouldn't change a thing.

For me, I'm not so sure. Maybe a clearer answer will emerge as Phoenix gets older and I get a better sense of how she is going to contribute to the world. For now, my answer is yes, I would take the extra chromosome out. My answer would be the same for any other significant disability or challenge. Why would I want my child to struggle more than she has to? More than everybody else?

However, sometimes I think this is a bigger question. If  we all could go back and skip the times when we struggled, when we felt pain, when we made really, really poor life-altering decisions, our lives would certainly be easier. You could argue that we might even be happier. But would our lives be better? I don't know.

And if we don't face adversity, then how do we grow as people? How do we make better decisions in the future? How do we adapt our responses and learn from our mistakes? How do we develop wisdom? Perspective? How do we grow?

How can I separate my growth into parts? How much is due to the long path of acceptance of Down syndrome, and how much is simply due to becoming a parent? To becoming responsible for keeping another human being alive?

In some ways we become more clearly ourselves when we struggle. Whatever doesn't kill us, makes us stronger. This is one of the few cliched lines that doesn't rub me the wrong way, because in my life it has been true. I am stronger. I feel more insightful. I have more perspective. I have grown.

But this isn't just about me. It's about Phoenix too. Although everyone faces adversity in their lives I worry she will face more of it. That she'll be more likely than other people with 'hidden' disabilities to be prejudged. That even if she happens to be the most capable and talented person with DS ever born, that society's notions and perceptions of DS and other disabilities will push her into a corner that she cannot turn out from. That she will be stuck between two worlds and will fit into neither of them.

I guess I just worry.

I should clarify that these aren't worries that keep me up at night. I don't obsess on this. It's not like worrying if the bank is going to foreclose on my house or that my parent is going to drink themselves to death, or worrying for my physical safety. These are very serious concerns that would keep me up at night if they were happening to me. It's just a thought that comes through from time to time.

But it is concerns such as this that make me want to take away the extra chromosome. At least for now.

And as a final share for the day: Phoenix wearing her raincoat around the house. Just 'cause.

I Struggle

The following was not written by me but was so compelling that I wanted to share. This is a post from
http://www.stimeyland.com/. She is a mom with Aspergers who is raising a child with autism.

I was recently at a conference where one of the presenters* stopped early on in his presentation, said that he hadn’t quite found his rhythm yet, and put up a slide. Following is my version of the slide he put up:

I struggle.

It stopped me pretty completely in my tracks. It is such a simple thing to say, but it is something that most of us spend much of their day trying to hide. Simply admitting, “I struggle,” is an extremely powerful thing.

I don’t know anyone who doesn’t struggle. Some struggle harder than others, that is for sure, but when you think you see someone who doesn’t, you should remember that you are looking at their outside and comparing it to your inside.

I hear from a lot of people who struggle. They get in touch with me to ask for advice or to say thank you or just to talk.

It might be nice for them to hear that I struggle too.

I would assume that you know that I struggle, but you might not. I know the face I put out in the world and that face struggles far less than my interior.  I have walls I put up, both for protection and to hide my struggles. Those struggles are not crisis-level for the most part and are just a part of daily life. Sometimes they are big, sometimes they are small, sometimes they are crushing, sometimes I compensate without even noticing them.

How I struggle and about what are not all that relevant here. Saying it, acknowledging it, nodding at it, and continuing on are what I think is the relevant thing.

I don’t have much of a point here. I just want to say that I know you struggle and it’s okay. You’re not alone. I struggle too. Maybe I look like I don’t, but I do. I am a little nervous to post this because what if it turns out that, in fact, I am the only one? Somehow, though, I am guessing that I am not alone.

I struggle.

* Doctoral candidate Matthew Moore at AutCom. Thank you so much for exposing yourself this way. It made me think.

p.s. If you’re looking for a word that loses all meaning after you say it a bunch of times, “struggle” is good for that.

Speech

We don't do a heck of a lot of 'formal' speech therapy. We have a SLP at our DS clinic who we see every 6-8 weeks for updates and new suggestions but everything else is on our own. Our latest suggestions were to separate longer words into syllables by clapping our hands ie "ba-na-na" and enunciating each syllable clearly. The other suggestion was to answer Phoenix back in two word sentences when she says one word to communicate her needs.

For example: Phoe: "Soap", Me: "More soap?"

It's not rocket science, but it is helpful to have an outsiders perspective on how I can improve how I interact with Phoenix, because they are not things I would think of myself.

Phoenix is a risk taker. She tries things out before she can master them. It's a great trait, mostly, and is really helpful in acquiring new skills. So it doesn't surprise me that she is taking many risks these days with her language.

Some of the ipad apps we have for her are flashcards with the picture and the word. We caught her the other night trying to say all the words on the flashcards, with varying measures of success. Some words you can hear clearly, others are gibberish. But it was really entertaining to watch.

Advocacy - Take 1

This is a letter to the Editor I had published this fall after my experiences looking for new child care.

Dear Editor,

I recently had the privilege of being a medal-bearer in Rick Hansen’s Man in Motion Tour of Canada. I was nominated both for my work with teenagers with behavioural, social and emotional disabilities in a local Alternative high school and as a mom with a two-year-old who was born with three copies of her 21st chromosome (Down syndrome).

It was important to me to be a part of this cause which promotes full inclusion in the community for people with disabilities, because historically, people with Down syndrome have been rejected and marginalized from society and were for many years hidden away.

It is incomprehensible to me that my daughter would not be considered a full member of society simply because she has extra genetic material which impacts her development.

I will fight tirelessly to ensure that she has the same entitlement as a community member that her typical peers receive. Although the perceptions around people with disabilities like Down syndrome have started to change, there is still much work to be done in many communities.

This past summer, I was looking for childcare for my daughter and stopped by a popular local day care. When I enquired about their policy for including children with special needs I was told unequivocally by the administrator that their day care was not licensed for special needs and was specifically not licensed for Down syndrome.

When I reflect on this incident what I was most disturbed about was this administrators’ ignorance, for no such licensing actually exists; day cares are licensed to care for all children, and it is up to them to foster an environment of inclusion and celebration of differences.

I was also disturbed by how quickly the administrator rejected my daughter outright on the basis of her disability, without stopping to determine if her special needs could be supported in a typical day care setting. We did go on to we find an exceptional dayhome provider through XXX XXXXX but this experience has opened my eyes to the resistance our family may face ensuring that our daughter has the same rights and respect as her non-disabled peers.

Although we have come a long way with including people with disabilities in the community, in schools and at work places, there is clearly still work to be done. The Man in Motion Tour reminds us that people with disabilities are valuable contributors to our towns, our communities, our schools, and our society.
Let’s continue to advocate for them to be fully included as members of society. If we do, perhaps next time that administrator is asked about including children with special needs, her response instead will be “Why don’t you tell me about your child and see if we can work together?”

The Measure of Success

I used to think that being smart was a big deal.

After all, isn't it one of the measures of how successful we become?

Only the smartest people go to university. Only the smartest people become doctors, lawyers, engineers teachers. And with the exception of teachers, all of these professions make big salaries and can afford big lifestyles. That's what is important, right? That's what we should aspire to? Big salaries. Lots of money. Big houses and expensive cars. These are the measures of success, right?

And then I started to work with at-risk teenagers at my wonderful little alternative school. And I began to re-evaluate what success meant.

Because for these students success is measured in much smaller increments.

Success is coming to back to school after dropping out. It is returning after failing. It is battling your addictions. It is enrolling in school after your baby is born or you have given a baby up for adoption. Or  after you have had an abortion because you know that you need to get your high school diploma and be able to afford to raise a child before giving birth to one.

Success is leaving the house even when your anxiety and depression are telling you not to. It is being able to reach out to your school staff to tell them that you are thinking about trying to kill yourself. Success is being the first person in your family to graduate high school. It is learning to take care of yourself instead of your alcoholic parent.

Success is coming to school day in and day out even though you have every reason in the world not to.

I work with amazing students: they are true survivors. They make me laugh. They make me want to cry. They frequently drive me crazy. But they make me take a breath and think about how to respond to their behaviours in a way that makes them feel listened too, respected, and lets them know that I am still the boss.

In case you were wondering, it's really not that easy. Well, it is now. But when I first started it was terrifying.

However, I've grown.  And over time they have taught me as much as I have taught them. Really, the best lesson I have learned working with these students is to re-evaluate what success means.

Which was pretty important to be able to do when Phoenix was born. Because all I could see were the "She'll nevers" and the "She wont's".

"She'll never get married"...sob.

"She'll never make me a grandmother"...sob, sob.

"She'll never go to university"...dissolves in a puddle of tears.

And she might not do any of those things. But these things aren't important to me anymore as a measure of success.

So how do I measure success?

Success is when your daughter smiles just because you are holding her close.

Or her Father teaching her how to catch a ball.

Success is each new accomplishment, no matter how small.

The older I get, the more I am convinced that it isn't things which define me. It isn't how much money I have. It isn't how smart I am.

It is my relationships. I am defined by my relationships. This is how I measure success. By the love I give and share. By the good I do in the world. By giving of myself and receiving just as openly. This is success.

Indelible

This is a trailer for a movie called "Indelible". You will be blown away by how capable and 'normal' the people with Down syndrome are who are profiled. I would imagine much of this has to do with how they have been raised - as if they were regular kids with regular capabilities and talents. And they turn out to be regular people.

What a progressive way to view disability.

It gives you a lot to think about. Raising children with DS with the assumption that they are capable and can learn and should be with their typically developing peers has only been adopted recently. And by recently I mean within the last 30-40 years. We are only just now seeing the results of this full inclusion. 

I am so excited to see what this means for Phoenix. I'm not saying that she won't have limits and challenges. We all do. Some of us more than others. I'm saying that the future for Phoenix and those like her is brighter now than it ever has been before.

The Heartbreak of Being #2

I wanted to write a little bit about Husband, and his experiences parenting Phoenix. Husband, as many fathers do, has a totally different relationship with Phoenix than I do. Husband swings Phoenix around. Throws her over his shoulder. Tosses her in the air. Snuggles with her during nap time (when she should be sleeping in her crib). They interact differently than she and I do. Not better, not worse. Just differently.

They have a strong relationship as far as it goes. I think this is due to the fact that when I returned to work after being at home for 9 months, Husband took the remaining 3 months of the parental leave. He dedicated 3 whole months of his life to caring for her.

Which is why, I think, that it is utterly heartbreaking for him that I am the favourite.

So he keeps on trying to change her mind.

When she falls, Daddy picks her up. When she needs help, Daddy rescues her. When she needs a playmate, Daddy plays with her. He is completely devoted to her. And yet, I am still the one she calls for incessantly. When he is playing with her. When she is sitting on the couch with her. Even after I go to work and he happens to be home with her that day. "Mom!" is still the first name out of her mouth.

I consider it payback for the smugness that was Husband when one of her first words was "Dad" or "Dada". "She loves me more," he'd gloat with glee. Or he'd just give me the look. The look that said "Ha, ha she can say my name and not yours".

Ok, maybe he never actually gloated. But it certainly felt unfair at the time. I was the one who carried her to term in my belly. Who went through the pain of a natural child birth. Who developed hemorrhoids from all the pushing. I was the one who tried so hard to nurse her. Who took her to all her appointments those first 9 months. Who found her daycare and her new day home. Who manages her investments and who applied for all of her disability paperwork.

I deserve to have my name said first. I am Mom.

But whose name was said first? Dad.

So now I revel in being number #1. I'm the go-to parent. She looks to me for bath and bedtimes. For solving her problems when she says "help, help". For snuggles, and books and songs. I'm the person. And you know what Husband? I love it. Or as Phoenix says: "Me. Me, me, me."

I know it will change as she gets older. That her alliances will become dependent on who she perceives to be the most likely to take her side (Dad).

But for now, Husband is #2. Insert silent gloating here.

P.S. Husband almost committed one of the greatest sins of parenthood this past weekend. He tried to introduce Phoenix to the kiddie rides at the grocery store. It's possible that this is his new way of positioning himself as the favourite. For all of our sakes, I hope not.

The Problem with People First Language

I am part of a number of online communities of parents who are raising children with DS. We are a pretty diverse bunch from all over the world, but we all are looking for others to connect with, ask questions and to share our stories and concerns with.

Mostly they are a pretty supportive community that embraces different perspectives. With one exception. They feel like it is their mission to correct other people's language. 

I frequently asking about methods to help them correct their friends, family members, co-workers etc. And it appears that the majority of the parents who respond are pretty happy to go around correcting everyone around them, given the right support.

Really? "Correcting" people? Like they are 12 years old and have done something wrong?

What is it, you ask, that is so important that the DS community has to go around chastising people?

People First Language.

People first language says that you have to say " baby with Down syndrome" rather than "down's baby". That they are first and foremost a person who happens to have DS.

What's the big deal, you may ask? 

Good question. Somehow, somewhere, the some people in the disability community were convinced that if you put DS first, as a descriptor, that it means that the speaker does not see the child as a person first.

Huh? Who could deny that this little person embodies personhood and humanity?

I have difficulty with the underlying assumptions of this logic. Because in what rule book does it state that simply because a descriptor comes first, that it limits the subject to only being defined by that word?

 For example, we often refer to groups by the attribute that gives them group membership. Like the gay community, or the black community, or the Christian community. Does anyone for a second believe that this is the only thing that defines them? That all of the members of this group don't have other attributes which make them unique human beings? That I am marginalizing someone if I refer to them as a Christian man or woman?

Why are the rules suddenly different when it comes to the disabled?

I met an elderly woman a few years ago at Costco who stopped to talk to me about Phoenix. She spoke with love and pride about her "Downsy girl", her daughter with Down syndrome. It was obvious she had high expectations of her daughter and proudly told me that her daughter recently was on vacation in Hawaii and learned to surf (which totally rocks by the way!). 

Obviously, this was a mother who put no limitations on her daughter, yet she still described her as "her Downsy girl." 

I could have chosen to write her off as someone who wasn't invested in promoting the talents and attributes of the the DS community if I had focused on her language choices. Instead, I listed to her message and to her heart. This woman spoke with love, and clearly saw her daughter as a person first.

This is why when I see the argument for people first language I know it is based on faulty logic. It is also why this argument just doesn't ring true to people outside of the community. In fact, it promotes a lot of eye rolling and a perception that we nit pick others. Which we do, if we use the logic when we don't use PFL that we don't see people with DS as people first. 

Which really isn't what the disability community wants to achieve. We want our kids to be accepted, to be treated as equals and to have all the benefits that every other member of society receives.

Here's what we should be saying:

Adults and young people with DS want to be talked about in this way. They want to hear "person with Down syndrome". They like the way it sounds. It makes them feel as if they are being accepted as a person and that the speaker sees past the extra chromosome, sees past the disability and sees their friend, neighbour, client, student etc.

This, my friends, is what advocating for our children is all about. It is about finding ways to educate others about the point of view of people with DS. Or, as I tell my students "getting what you want from someone without pissing them off". This is the goal that is being lost.

If we approach people first language from the point of view of the people who are requesting it, it makes sense. It doesn't cause eye rolls. It doesn't sound like lecturing. We're not correcting. We are creating an atmosphere of respect because that is what people with Down syndrome are asking for, and we are listening to them.

It's not trivial and it's not nit picking - it's advocating.

Right now I use people first language myself, but I won't correct others. If there comes a time when Phoenix hears it and wants some help addressing it, then I'll be there backing her up. But until then friends and family can feel free to express themselves without worrying if they have said the right thing the right way. They can "Down's this" and "Down's that" all the way to Kansas and back as long as they treat my daughter with love and respect. Actions speak louder than words in my world. 

"Why your kid is crappy" - medical conditions

There are many physical differences that can come along with an extra 21st chromosome. Because these birth defects or anomalies can be seen on ultrasound, about 50% of the time DS can be suspected before birth.

With Phoenix, we had great ultrasounds. All her measurements were good. Her heart looked good. No issues with her intestines or organs. She was a pretty healthy little baby. We even had a fetal echo (ultrasound of the heart) done at about 25 weeks. The technician said if there was anything there, it was too small to detect on the scan. It was great news all around.

Because there is a long list of differences that can can happen with kids with DS. These include:

Birth defects involving the heart, such as an atrial septal defect or ventricular septal defect

Eye problems, such as cataracts (most children with Down syndrome need glasses)

Gastrointestinal blockage, such as esophageal atresia and duodenal atresia

Hearing problems, often caused by regular ear infections

Hip problems and risk of dislocation

Long-term (chronic) constipation problems

Reflux

Sleep apnea (because the mouth, throat, and airway are narrowed in children with Down syndrome)

Teeth that appear later than normal

Under active thyroid (hypothyroidism)

However, I'm heading back to my complaint about laundry lists like this one.

It doesn't actually tell you what life is going to be like with a child like mine. It gives you a list of possible medical conditions.

And even with some of the above conditions, it doesn't tell you that many of them, such as heart defects and intestinal blockages, are fixed by routine surgery.

These 'lists' also do not describe the joy that children with DS bring to their parents and siblings or to the happiness they themselves find in their lives. And they do, find happiness that is. There is a great article here that has found that 99% of people with DS surveyed liked their lives, 97% of them liked who they are and 96% liked how they look.

99% of people with Down syndrome are happy with their lives.

These are astounding numbers.

 I can't think of any population of people anywhere (with the possible exception of Buddhist monks) where 99% of them would say that they were happy with their lives. Seriously.

This says a lot.

It says to me that the scorn and derision with which many people view those with DS is misplaced. It also says to me that our values in North American society such as our obsession with monetary success and our emphasis on having a superior intelligence are woefully misguided. Because, if it isn't obvious to you now, being smart and successful doesn't necessarily make you happy.

And then there is my little love muffin right here. Who brings so much happiness and fullness to our lives. Who could imagine how completely Phoenix embodies life and health?

Certainly not anyone who is given a laundry list of why their kid is crappy.

"Why your kid is crappy" - Cognitive Disabiltiy

It is generally accepted that kids with DS will experience a cognitive disability. Wikipedia gives the stat of 99.98% of people with DS having a cognitive disability. So it is most likely that Phoenix will fall into this category. It is possible that she will be 'brighter' than this, it is just not likely. 

It's ok. Really. It is what it is.

It the past, this used to be referred to as mental retardation. "Mentally retarded" is generally no longer used. Instead we say "intellectual disability or cognitive disability or delay". Why  does this terminology matter? Because unfortunately the word 'retard' or 'retarded' has been commonly adopted as a slang word equated with something negative, bad or unacceptable. My daughter isn't something negative. She isn't unacceptable and she isn't stupid. She has a cognitive delay.

Lauren Potter from Glee puts it rather nicely here:

Can you see why the disability community is working so hard to get people to stop using the "R" word?

Please, spread the word to end the word. For Phoenix. For her friends. For our families.

Back to my story. What does a cognitive delay look like?

Well, children with DS learn more slowly than their typically developing peers. It takes longer for information to be processed and to be remembered. It takes more repetition to learn concepts and remember information. Children with DS can learn, just at a slower pace.

What will this mean for Phoenix? Long term, I have no idea.

Short term, it means that she qualifies for a great EI preschool that my school district offers. She'll go to school in a partially integrated classroom with a spec ed teacher, some EA's and an OT and SLP. I'm super excited for her to go.

I'm secretly hoping that with all of the early learning that I am providing that she might be one of the most impressive children with DS they have ever had the pleasure of working with.

Well, I guess it's not a secret now.

 As she grows up she will be fully integrated with her peers for elementary school. This is great for a few reasons. First, for many kids with DS social skills are a strength. Second, it helps reinforce for other children that having friends and classmates with disabilities or differences is normal. It is normal. It takes all kinds of people to make a great society and the more this realisation becomes part of the common psyche, the less likely it is that people with disabilities will be set aside or seen as unacceptable. As flawed.

In terms of learning, children with DS tend to be visual learners and learn better by seeing than listening. Single word reading is a strength for many kids with DS, so that learning to read is totally expected. And there are many parents in the DS world who are doing early reading programs with their kids - quite successfully, I might add.

Children with DS also take to sign language really well. Sign language is a wonderful bridge for children who will be language delayed. It allows them to communicate their feelings, needs and wants before their little mouths and tongues are able to articulate. I consider it a second language. I am teaching Phoenix a second language not only to help her communicate better with us, but to give her little brain a second way of thinking about the world. To provide new neural pathways and more brain plasticity. To allow her to communicate with other children and adults who may be hearing impaired. And because she LOVES it.

For those not in the DS community, there is a signing program called Signing Times. There are books, flashcards and videos that all teach sign to hearing children. We have been watching the videos since Phoe was just over a year and she is obsessed with them. She requests to watch them all the time and is so animated and engaged while it is on. She signs right along with them.

Learning to sing has also helped her speech. I have noticed that many of the words she says are words we frequently sign, and she always does them together. She's learning 2 languages at once.

The problem with thinking about Phoenix as being 'mentally retarded' is that it doesn't allow space for her to be smart, or bright or capable of learning. All of which she clearly is.

My child is not a retard. She's just a child.

Early Intervention

Children with Down syndrome are developmentally delayed. This is a literal term which simply means that it takes longer for most children with DS to reach their milestones like crawling, walking, talking, potty training etc. They all get there.

Just in their own sweet time.

And when they reach their milestones does not determine how well they do in the future. Much of the developmental delay is from their low muscle tone - which makes it harder for them to learn new skills and to get their body to move in typical ways. Muscle tone is not correlated with intelligence.

With typical kids walking just happens. With kids with DS, they have to build up enough core strength and coordination to put all of the steps it takes together to walk. So it takes longer. Phoenix walked at 22 months which is smack in the middle of the normal range for kids with DS.

Because of their developmental delay, it is recommended that all children with DS qualify for Early Intervention (EI). We qualified immediately and had our first visit with the social worker and nurse from our local DS clinic a few days after Phoenix was released from the hospital. They were...wonderful. It was a really positive meeting which was much needed after our experience with the Geneticists. And they brought for us a beautiful hand made quilt that is donated to the clinic to give to families like ours.

For anyone who isn't aware, the purpose of EI is to have our kids learn skills properly, it doesn't help them do things faster. And it isn't a magic panacea that will take away all the challenges that Phoenix will face in her life. It won't make her less delayed. It won't help her catch up with her peers. But it will make sure that she has the tools and skills needed to reach her next milestone, when she is ready to get there.

One of the therapies we did with Phoenix during her first year was water therapy. Water therapy helps the kids build core strength by having to move against the force of the water - which is hundreds of times more force than moving their body through air. Here is Phoe and her Dad having fun at our therapy pool:

Low muscle tone is the culprit for many of Phoenix's challenges. Low tone in the mouth makes eating and speaking more difficult. Low tone in the belly causes reflux. Low tone in the hands and arms make it more difficult for her to use utensils.

Phoenix is able to do all of these things, she just moves forward through the progression of skills at a slower pace. Which is OK. Because I know she is working really hard to get there. Working to the best of her potential, if you will.



Working to the best of her potential. How many people can claim to be doing that?

The Humble Brag

Yesterday I wrote about how annoying it is to have your name called 250 times during the day. After reading it you may have been asking yourself  "Did she just use her kid to...? Was that.... the humble brag?"

For those who haven't heard about the humble brag, it is bragging about something by way of complaining. When I was in 6th grade, one of my classmates was the queen of the humble brag: "Oh, poor me, I was picked as the lead in the church play AGAIN this year. It's going to be so much work!"

It drove me nuts. Even at age 11 I knew what she was doing. She was totally bragging, but just couldn't come out and do it honestly. And, in case you were wondering, her parents were the ministers of her church. And yes, after all this time, I still feel the need to bring this point up.

So I realise that yesterdays post might have come across as "the humble brag".

I try not to brag about Phoenix (too much). But it's normal to brag about your kid right?

You get really excited when they learn a new skill or come out with a new word.

Well, except for the night a few weeks ago when Phoenix, who repeats back the last word of any given phrase, was called a "pain in the ass" by her father. You can imagine which word she repeated back. I was actually not so thrilled that night.

I seriously have nightmares about the language that will pop out of her mouth when she goes to preschool next year. Can you imagine if it is YOUR kid that drops the first swear word in the middle of class and you happen to be a spec ed teacher yourself? I'm sure she'd be REALLY impressive then. But, I digress.

Ok, I totally brag about my kid. As I expect any other parent to brag about theirs, DS or not.

And it shouldn't be too surprising after I titled my blog "Celebrating Phoenix".

OK, humble brag over. For today.

Silence is golden

This is a transcript of most conversations inititated by Phoenix lately:

Mom. Mom, Mom, Mom, Mom, Mom, Mom, Mom, Mom, Mom, Mom .....

If I heard it once on Sunday, I heard it 250 times. 250 times. It's enough to send anyone round the bend.

I LOVE, LOVE, LOVE that Phoenis is talking and that her speech is progressing. I'm actually thrilled. It's happening earlier than I had expected.

But there are days, like Sunday, that I regret that she is talking already.

Because what I didn't realize at the time when I was so desperate for her speech to develop is that silence is golden.

Maybe it's the same way with typically developing kids, I don't know because Phoenix is my first. Maybe all parents are anxious for their kids to reach their next deveopmental milestone. Crawling, walking, talking. And then when you get there, you realize that the next stage is so much harder then the one you were just at. And you realize how good you had it at the time, before they started walking (running away).

What I am realizing is that where you are is sometimes good enough. That it is comfortable, that it is known, and that it lets you enjoy the predictability of what you are used to.

Silence is golden. This is my lesson today.








But smiles? Smiles I will take any day.

Life with your partner after kids

This is a challenging one to write because our story is a little different. It's actually ass backward.

Most people meet, get married, buy a house then start having kids, or some sort of path like that. We met, got pregnant, had the child, moved in and then bought a house together. Pretty much the opposite of what is usually recommended. I would think it is generally accepted that it's a pretty good idea to know your partner more than 3 months before you get pregnant. Whoops. Thank goodness everything has worked our for us, because of the couples I know who started on this plan, only one of them is still together.

So here we are, together less than a year when Phoenix is born and we find out she has Down syndrome. Talk about stressful. But looking back, not entirely so. After the shock wore off, we were pretty ecstatic to be having a baby. Our own child. To start a family.

It is also pretty well accepted that having a baby is a stressful event that tests the strength of many relationships. Many couples find it the source of conflict and arguments. And we have had our fair share of them to be sure. But surprisingly, her having DS wasn't the source of them. Most of them had to do with who was going to move where (we lived in cities 3 hours apart for the first year and a half of our relationship and until Phoenix was 9 months old) and about Husbands work situation. That's where most of the conflict stemmed from.

I had a friend tell me a while ago that she felt that the 9 years she had with her husband didn't in any way prepare her for how their lives and roles would change after the children arrived, and how she felt this ultimately contributed to the end of their marriage.

When I apply this experience to our situation, the future looks bright. Because our whole relationship has been established within the structure of our family unit. To be clear, we have interests and bonds and commonalities outside of Phoenix. But raising Phoenix unites us. It's this common goal that we have together that helps clarify our vision for the future.

So when asked how our relationship has changed since the child has arrived. The answer is...not so much. We have less time for ourselves. We have fewer date nights due to Husbands unpredictable schedule. Our outings revolve around shopping and household errands and chores and walks around the neighbourhood. But we like our life. At least I do. Husband can speak for himself. Life after kids is good. It's just different than life before kids. You have more responsibilities and less time for yourself. It's busier. It's happier. It's filled with love, sharing, laughter and a surrendering to child-centred interests.

Life with your partner after kids is good.