Wednesday, 31 October 2012

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.

Tuesday, 30 October 2012

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.

Monday, 29 October 2012

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.

Sunday, 28 October 2012

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.
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.

Saturday, 27 October 2012

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.


Friday, 26 October 2012

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?”

Wednesday, 24 October 2012

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.


Tuesday, 23 October 2012

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.

Sunday, 21 October 2012

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.

Saturday, 20 October 2012

"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.



Friday, 19 October 2012

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?

Wednesday, 17 October 2012

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.


Tuesday, 16 October 2012

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.

Monday, 15 October 2012

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.

Sunday, 14 October 2012

Special babies go to special people

Special babies go to special people. I hate this phrase.

I hate it because it is untrue and because I can't help but feel that the speaker of said phrase is only saying it to make themselves feel better.

I know it is untrue because I have met lots of parents of special needs kids who are not fabulous parents, who have done some pretty horrific things to their kids, and who  have not done a very good job of meeting their kids special needs.

This is definitely NOT the case with ALL parents I meet, but I have met some real winners, to be sure. The phrase "apple....tree" comes up fairly frequently actually - as in "the apple doesn't fall far from the tree".

Obviously this isn't the case with DS, where the disability is coming from extra genetic material, but I still question the validity of saying that only people capable of raising a child with special needs are given one.

Oh, there is a special irony that I can appreciate in having a spec ed teacher like myself have a child with DS. But I don't do her kind of spec ed, or work with her age group. So I am just as unprepared as everyone else when something like this happens.

I know I don't sound unprepared now. I sound pretty confident and self assured. That 's because my secret passion is research. I LOVE research. I love reading. I love saying the phrase, "Well, the research says that...". Seriously. It may be my favourite phrase in the entire world after "I love you".

I read the research, assimilate it into my bank of knowledge and strategies, and launch from there prepared to tackle our latest challenge. And when I don't know what to do, I ask our fabulous supports from the DS team, or my small group of mom's who, like myself, are trying to do the best by our kids. It's a win-win situation.

So special babies do not all go to special parents. But I am thankful to have met a small group of us who are pretty wicked parents and who have special little kids with DS.


Happy Sunday.

Saturday, 13 October 2012

On teaching sign language

I had always planned to teach any children I had a second language. I think it is a really important skill to have in this world, and in Canada it makes you a more marketable employee. I took several years of French in school and although I am no where near bilingual, the French I do have has helped me navigate international travel and to communicate on a simple level with native French speakers.

So when Phoenix was born with DS, I was bound and determined that she would still speak a second language and that I was still going to enrol her in French immersion. As Phoenix has gotten a bit older I have had to re-evaluate my thinking in this area. Although her language is developing nicely, it is a struggle for her to articulate and put syllables together. Becoming a fluent English speaker is going to be a longer road than it is for most kids and I'm not sure that a bilingual program is really going to benefit her.

But I have realised recently that having a second language isn't out of reach. We can make her second language ASL (sign language).

We started teaching sign at about a year old to attempt to bridge the communication gap that was likely going to develop between her understanding and her ability to talk. Children with DS are frequently very late talkers with language taking off between age 4 and 6. So it is extremely important to teach sign language to help them express their needs and wants, and to prevent negative behaviours which emerge out of frustration.

It is also a good way to work on neuroplasticity at a young age. Neuroplasticty is the brains ability to adapt, to be flexible, to develop new neural pathways. Learning a second language helps the brain think in different ways.

Having worked with young people with intellectual deficits, one of the things I have noticed about them is that they tend to be rigid thinkers. They are not able to be flexible, or think about things in different ways or to think about things abstractly. In essence, they are not as adaptable as other people. It leads to an over reliance on routine and predictability and makes it difficult for people to adapt when routines change or something unexpected happens. Then all hell breaks loose.

Don't get me wrong. As a spec ed teacher, routines are my friend. Children and youth alike respond to routines and thrive on predictability. It creates a safe place where children know what to expect. But our world is all about change. Unexpected things happen all the time, so we need to try to teach skills that allow our kids and youth to deal with change and to cope with the unexpected.

This is what I am hoping to work on with Phoenix as she grows up. I want to make her as flexible a thinker as possible. To see that the world is not just black and white, that there are nuances, and other ways of tackling problems and dealing with change. In my world this is all tied up in a term we call resilience.

I hope that by encouraging the use of a second language, a second way to think about the world and to express ideas and concepts that I will be able to help Phoenix become more flexible and adaptable.




Because I want this beautiful and determined child to have success and options in her future.

Friday, 12 October 2012

On growing up slowly

One of the things that someone said to me at the start of the journey was that what they liked about their child with DS was that everything about their development was slowed down just a little bit.

I am beginning to understand what they were talking about. Phoenix is my first child, so I have nothing to compare her to, but I am starting to see little bursts of independence that make me wonder where my baby went.

This week for the first time we went to an indoor children's play area, and I let her have time to explore the structures herself. This was a particularly accessible structure with easy climbing and soft mats everywhere. It was actually perfectly designed for her skill set right now. After I showed her how to get up, I let her have some time exploring it herself. And you know what? She did great! She went up and down with confidence and just needed a little redirection away from the bottom of the slides.

Here she is at home going through her own tunnel:



It was still a busy time for me monitoring where she was etc, but this was the first time I have taken her out and let her explore on her own. It was...wonderful. And a little sad. I am so appreciating the stage she is at right now. I love the snuggles, and kisses and hugs that Husband and I get, both spontaneously and when we ask. She is so affectionate, and we can spin her around and raise her up and blow raspberries on her belly. I know this stage won't last forever. And I appreciate that it is lasting a little bit longer than most parents get, because it is heavenly.

Previously, when I thought about a developmental delay, it was always something really negative. But I don't see it that way with Phoenix. Sure, her development IS delayed. She is behind her peers in many areas. But she is doing great, and slowly gaining independence. Why do we want our kids to grow up so fast anyway?

I have seen this delayed growing up in other youth I have worked with. They are typical kids who just take longer to meet their milestones and to launch into the world. They take much longer to graduate high school because they work slowly through their courses. They live with their parents a little longer, they might take longer to find their path in this world, or to date or meet their life partners. But they are doing just fine.

This is how I think it will transpire for Phoenix. I think she will eventually get there. She will reach independence. It will just take longer before she is fully able to live on her own. There will be more steps, more trial runs, more supports. But she will get there. In her own time.


Thursday, 11 October 2012

Our pediatrician

Today we are off to our paediatrician. We love our paediatrician. From the start she has been very positive about Phoenix's development and each time we visit she always comments on how great Phoenix is doing. What's not to like about that? One of the things I appreciate about our Dr is that she listens to our concerns, makes us feel like valuable team members, doesn't talk down to us and interacts really happily with Phoenix.  We saw her frequently Phoe's first year, as there is a lot of monitoring that goes on this year to check that her senses and body parts are working the way they should. We co-ordinated a lot of visits to eye doctors, audiologists, cardiologists, sleep clinic etc. I am happy to say that all of these appointments have fallen off. We see the eye doc once a year. We see the audiologist every 6-9 months. And the best news ever - we don't have to go back to the cardiologist! Phoenix has a perfect heart with no issues!

Our trip today is to talk about reflux. Phoenix has had reflux since birth. This means she still spits up frequently and when it is not managed properly, I can smell stomach acid on her breath. Having had heart burn though out my pregnancy, I can appreciate how painful and uncomfortable it must be to deal with this every day.

We also update the Dr about Phoenix's eating and developmental milestones.

Another thing really I appreciate about our doctor is that she doesn't focus on age comparisons. By that I mean she doesn't tell us how far behind developmentally Phoenix is or what her typically developing peers can do. This is really helpful for a number of reasons. First, it's pointless and useless information. Honestly, what would that do other than make us feel bad about how Phoenix is doing? Second, it is a strength-based approach to her development - we are always focusing on what Phoenix can do, rather than what she can't do. And finally, it lets me believe (right or wrong) that Phoenix is just like any other beautifully developing 2 year old (or about 6 months behind her peers). Because even though I can celebrate how well Phoenix is doing, it is easier for me if I conceptualize her as being just behind her peers, rather than seeing her as an extremely delayed child. If that means that I live in rainbow and butterfly land - then so be it. That's how I see her.

So that's why I love our trips to the doctor. I'll let you know how it goes:)

Update: Wouldn't you know it. Just when I get all sentimental about our doctor, she announces she is retiring in 6 months. Crap.

Wednesday, 10 October 2012

On eating

I write a lot about Phoenix's areas of strength. Part of the reason for this is that I always want to show Phoenix in the best light possible - I'm always truthful, but I choose carefully what I want to talk about. And Phoenix does have many strengths, I am proud and fortunate to be able to say. However one of her long struggles is with eating.

In fact her dislike of eating is so profound that it made me seriously consider if she had been switched at birth.

I come from a family of foodies. We love really, really good food. Some families buy cars, some buy electronics or computers, my family went out to eat at some of the best restaurants in Toronto. My father was a gourmet cook and exposed us to some incredible food and cooking. Whenever I go back to visit I have my dad make me his famous cheese fondue and veal marsala. This is the kind of family I come from.

So to have a child that hates to eat is surprising to say the least. Her food aversions started early. She stopped nursing at around 5 months old and I could not convince her to continue. When we started solids she was super picky about what she would and wouldn't eat and was slow to progress through the stages of eating. Even now trying to convince her to try new foods is challenging to say the least. And often it isn't even a texture or taste thing because we can't even convince her to try the food. She simply doesn't like the look of it.

So for the past year an a half we have been supplementing with pediasure safe in the knowledge that even if she would only agree to eat popcorn and yogurt all day that she was getting the nutrition she needs.

However, after meeting with the OT and dietitian "we" have decided to ween her off of the pediasure to see if we can increase her appetite.

I'm finding it really hard.

I feel like pediasure is the crutch I've been using for the past year and a half and I don't know how to walk without it. I'm not confident. I feel like I might fall and take Phoenix and her nutritional needs with me. Ak. I know she needs to be eating more, but it is so stressful to try and get her to eat fruits and veggies in any quantity.

This is a normal parent concern right?

Everyone worries about their kids getting enough nutrients?

Tell me it's going to be ok without pediasure? Please?

We are 3 days into this experiment, and her quantity of food seems to be picking up. She even tried Greek salad for me last night. She didn't eat a lot of it, but she tried it:)  Who knows? Maybe this crazy plan will work.


Monday, 8 October 2012

On teaching Phoenix

I believe that parents are their childrens' first teacher. Although I teach spec ed (and now English and Social Studies) I specialise in high school students. With the exception of my own child, and my friends children, I don't really like young children. I don't hate them or anything. I just think that young kids aren't as interesting as teenagers and there isn't as much to talk about. It's why I teach high school and not elementary. I don't want to spend my whole day with young kids.

Then I had my own child. I still prefer to work out of the home with teenagers, but now I genuinely like spending time at home with Phoenix on the weekends and at night.

Maybe it's because teaching is in my blood. Maybe it's because I believe that the brain is the most flexible and malleable before the age of 8. Maybe it's because I feel like I have something to prove. I don't know, but I really want to make sure I am working with Phoenix to teach her the fundamentals. So we spend some time each day learning.

We don't, however,  spend every waking minute on learning activities in the day. First off, because from Mom to Fri Phoenix goes to a wonderful day home while I teach my students. They do regular kid stuff at the day home. It isn't geared towards kids with special needs, although one of the other older boys is a little delayed too because he was a micro preemie.

I'd say that maybe 10-20 minutes a day is all we put into learning activities that are planned by me to target specific concepts or lessons. Sometimes we do a number puzzle, or a sorting activity, or alphabet flash cards or sight words (although her tolerance for sight words is pretty minimal right now). It's no big deal and Phoenix seems to like the activities and benefit from them too.

In terms of the ipad, Phoenix can spend from 20 min to 45 min at a time using apps. We have about 30 apps now and about 90% of them are learning games. We have only a few that are purely for fun, but these all have music attached to them and Phoenix loves them too.  Having been using the ipad for 6 months now, Phoe is able to choose the app she wants, use it with minimal support from myself and then move on to another app of her choosing. If you have any other suggestions of apps you are using, please let me know so we can check them out.

Here is Phoenix doing her number puzzle:




And, truth be told, the ipad is also the electronic babysitter. I use it to entertain Phoenix on car rides, when I have chores to do, or when I am not feeling well. It does a very good job of occupying her attention, when I cannot.

I hope never to teach young children in my profession, but it's kind of cool watching Phoenix soak up the lessons I am providing her.

On grief (Children are not McHappy Meals)

Grief is something I know a lot about. For at least a year it was a suit of sadness that I lived in. And I lived there by choice. I let it consume me. It accompanied me every day wherever I went. I would take Phoenix to the mall and see all there other parents with their children with 46 chromosomes. And I would cry at the unfairness of it all. How did I get to be the one who ended up with the kid with Down syndrome? Why couldn't it happen to them?

I thought some very ugly thoughts. And I cried rivers, and rivers of tears. And I obsessed, and ruminated and yelled about the unfairness of it all. I went down the same road over and over again and still nothing changed.

I saw a post partum counsellor for a long time. And I said the same thing over and over: "It's not OK that she has Down syndrome." She had many different responses for me during our sessions, but this one stuck with me the most: "Children aren't McHappy meals. You don't get to order what you want."

But still I continued to run into the same brick wall, because it was not OK that Phoenix had DS. Until I realised that the wall wasn't going to move, and that in order to move forward I had to go around it. And I did what I have done so many times in the past to make sense of events. I separated things into their parts and held two contradictory views. It wasn't OK that she had Down syndrome. But I could be OK that this was my daughter.

We also looked at separating what was a worry, from what was a problem. A worry is something that may or may not happen way in the future that I have no control over. A problem was that I couldn't get my 4.5 month old to nurse. And as I focused on problems rather than worries, my grief became easier to bear.

I also did something else that allowed me to grieve fully and completely. I didn't judge my thoughts and feelings. I didn't allow myself to feel guilty for anything I felt, thought or said while I was trying to come to grips with what DS meant to me. I allowed it all to come pouring out, no matter how dark and dirty.

And you know what happened? It freed me. It allowed me to leave the darkness in the past and to focus on the here and now. It allowed DS to settle within me, and I was able to take off the suit of sadness and put it away. It is still a part of my history. It is still part of my story. But it doesn't control me any more.

Down syndrome is part of our lives. I'm still not thrilled she has it. But Phoenix is OK. And the grief is gone.

Sunday, 7 October 2012

Thanksgiving

This weekend is Canadian Thanksgiving. This weekend I am giving thanks for:


  • having a loving an supportive family
  • a healthy child
  • a loving partner
  • a roof over our heads
  • a job I love and feel appreciated in
  • having gifts and talents that I am able to explore
  • writing
  • having free and accessible healthcare
  • being in my 30's
  • great friends from coast to coast
  • my health
  • a balanced budget (seriously)


What are you thankful for?

Saturday, 6 October 2012

On perspective

Perspective is an interesting thing. You don't have it while you are in the midst of a crisis - which is when you need it the most.

I think my perspective on what Down syndrome means or is has really developed recently. And I mean specifically MY experience with Down syndrome and how it has impacted Phoenix, Husband and Me.

Husband was such a good role model for me from the beginning. He always believed that even with DS, Phoenix was OK. That everything was going to be OK. And for him, it has been OK.

I didn't get it. I mean, I really didn't get it.

How could he be OK with DS? How could anyone?

But I've had some time to let DS settle within me. And to see how DS has impacted Phoenix. She is healthy. There are no heart problems. She doesn't get sick a whole heck of a lot. She sleeps well. She has grown out of her sleep apnea. She hears and sees just fine.  Her development, while delayed, keeps trucking forward. She's funny and bright and capable of learning. And I am happy with how she is doing.

I am happy with how she is doing.

These are surprising words for me to write. Because if you asked me 2 years ago if I ever thought I would be happy with how Phoenix was doing, the answer would have been "NO". Not just NO, but a NO hurled at you with tears and heartbreak and hopelessness.

But I am happy with how she is doing. In fact, I couldn't be more pleased with her progress.

Perspective.

I have come to see that things in themselves don't actually change. They are what they are. No matter how we rail against them or reject them or view them, they are what they are.

So what happened?

I changed my perspective. I stopped judging her delays. I stopped looking critically at her development and the things she wasn't doing and started to look at what Phoenix could do. I stopped comparing her to other children. Oh, I notice what other children are doing and celebrate their development. Young children are able to accomplish some really incredible feats. They learn almost by osmosis. I can see that many children are doing things that Phoenix cannot yet do. But it truly doesn't bother me. I don't feel hurt to see that other children are ahead in terms of development. Because I have stopped judging.

Phoenix is where she is and other children are where they are. It doesn't imply anything. Objectively, things exist in isolation, free from emotion. It is us who gives facts meaning. We create and attach emotions to reality. So we can choose which emotions to attach.

Perspective.

I wrote this recently about Phoenix and her development:

I write a lot about how well Phoenix is doing. This isn't an objective fact. No one who is an expert in child development has sat me down to confirm this for me or anything. It is just how I perceive her and how positively I perceive her development to be. She is doing well because that is how I see things. I could look at her and say "oh she isn't doing x,y,z" and think about how delayed she is. I don't. Every day I look at the incredible things she can do and think "My kid is awesome."

Perspective.

We choose how to attach meaning to the events of our life. And so when it comes to Phoenix, I choose joy and happiness.




Friday, 5 October 2012

On therapy

In case anyone was wondering, by 'therapy' I mean the services offered to my daughter as part of the early intervention program thorugh our local DS clinic. Therapy usually consists of OT (occupational therapy), SLP (speech language pathologist), PT (physical therapy) and possibly feeding therapy or developmental therapy. I would say that most people have therapists who come to their homes or to their child's school, daycare or dayhome to work with the child on various skills. For those who are not familiar with early intervention, the idea is to have our kids learn the proper skills at the level they are at developmentally. It is not to accomplish skills sooner, it is to perform them properly.

I've come to realize that our particular model of EI is fairly unique in terms of service. Our therapists work out of a central office and we go in every once in a while to meet with them. I tell them my concerns, and they observe where Phoenix is at and then they give me written instructions of how I can work with her to facilitate her growth.

It's a brilliant system. Not only do I not have to take a boat load of time off work to meet with therapists who work their magic with Phoenix in isolation, but I become a very competant 'therapist' by working with her myself. This model actually builds my capacity as a parent and allows me to work 'therapy' into our daily life whenever we feel like we have the time.

I think because this model is so ingrained in my life I find the therapy schedules that other family's keep to be crazy. Like, revolve their whole life around therapy crazy. I mean, really. Who wants to revolve their whole lives around therapy?

So, what does this look like?

We work on gross motor skills by going to a play gym once a week with typical kids. Phoenix loves it and it is good exposure for both her and the other kids. No one has ever said anything about her being different and the other parents are very accepting; it's a really positive experience for both of us. I often have to show Phoenix how to climb the play structures by placing her hands and feet where they need to be, but she is gradually getting the hang of everything. This is a really authentic way of working on PT. She is learning and using authentic skills in their proper environment. In my opinion, this is how therapy should be done - not as separate lessons done in segregation with therapists, but as a real life experience.

We work on OT by encouraging independence skills at home. Phoenix climbs up and down the stairs herself and on and off of furniture. She places her own clothes in the dirty laundry bin and helps me with laundry by placing dirty clothes in the washer and transferring the clean clothes to the dryer. She has her own drawer in the kitchen where she puts the plastic containers. She tidies her own toys and books (with assistance) and feeds herself with her hands and with a fork. Often she feeds me with her fork and I feed her with my fork. I give her manageable groceries to transport from the front door to the kitchen after we grocery shop. These are all self-help skills that can be encouraged in young children. It makes then feel useful and makes them use their body in purposeful ways - which is the whole point of OT.

We work on speech language by singing songs, watching educational videos (Signing Times, Meet the Sight Words) and using sign language. We practice saying the alphabet during bath time. I try to help her target specific sounds in multi-syllabel words (hi-ppo). I talk constantly to her about what we are doing, where we are going, what it is time for etc. I try to encourage her to put two words together (Mom, help or Mom, look). She now repeats the final word of any particular phrase back to me, often from songs she listens to. Much to my chagrin she has also successfully said her first curse word - after her father called her a pain in the ass.

Note to self: start spelling curse words around the child.

None of this is particularly difficult. Much of this I have figured out myself and when I can't I go to the DS team for help. However, I know, without a doubt, that my confidence as the manager of her program comes from the tips and support I have been receiving for the last 2 and a half years from the DS team. This is the REAL benefit of a parent-driven EI model.

Because to me, therapy looks a heck of a lot like parenting. It is just intentional, purposeful parenting that is supported by a team of consultants. 45 minutes ago · Like · 1..

Thursday, 4 October 2012

On having a normal life...

Last night, from upstairs in the playroom:

"Mom?"

"Yes Phoenix?"

"Mom!"

"Phoenix, come downstairs, I am making dinner"

"No! Mom?"

"Phoenix, come downstairs if you want something, I am making dinner."

"No!... Mom? ... Help, help" (for the iPad)

"Honey, if you want help you have to come here."

"Mom!"

And on it went until I went to go get her for dinner.

Life with Down syndrome is a lot like .... life. It is a lot of negotiating with a 2 year old, and redirecting unwanted behaviour, and lots and lots of cuddles, hugs and kisses. It is full of love and laughter and cheeky little girls flirting with defiance. It is full of learning, and Signing Times and drawing on the driveway with chalk. It is full of singing children's songs and trips to the playgym and ice cream at Costco. Life is just full. Not because of Down syndrome. But because we have jobs, and friends and hobbies and a child. Pretty normal, right?

Wednesday, 3 October 2012

Everything happens for a reason


I feel like I've lived an almost charmed life. Oh, I've had hardships to overcome and challenges to tackle.  But I've always managed to have a semblance of control over the situation. You see, every time I had hit a rough patch in my life, I was able to make a change or find a way to negotiate through the experience. My entry into teaching was pretty bumpy with a spectacularly failed attempt at teaching grade 3.  It was so bad that I quit my job, left my home town and moved halfway across the country to live in a hippy haven for 18 months. I'll never teach elementary school again, and to this day still have nightmares about teaching kindergarten. But I was able to find a way to make sense of the situtation and to use it it to make a change that I could live with.

When Phoenix was born with DS, I was at a total loss. I couldn't change it. I couldn't give her back (and believe me, I wanted to) and I couldn't make the DS go away. Because as we all know, you can't pull chromosomes out of people.

And I definitely could not come to terms that this had happened for a reason.

Everything happens for a reason. I hate this phrase. I hate it. I used to believe it. I used to think that I could draw meaning from or to each event in my life. I went round and round trying to find meaning where none was to be found. Why was my child born with DS? It didn't make sense. This wasn't supposed to happen to me.

I think everyone finds their own answers to these questions and this is the only thing I could come up with:

Sometimes things happen and there is no meaning to it. Sometimes things just happen. Sometimes cells fail to split properly, and sometimes this results in an extra copy of the 21st chromosome. And all of these 'sometimes' happened to me and to Phoenix.

It just happened and it doesn't mean anything. There is no moral. It just is.

I've also come to realize that my life hasn't really been charmed. I just view it that way. I look back at the challenges and can see that they were valuable opportunities to grow as a person. Even my failed attempt at teaching elementary school helped me to see that I really wanted to teach older students. So when I was finally ready to try my hand at teaching again I landed a job within the family of schools I currently teach in and found my niche working with troubled teens. I have grown tremendously as a person within these past 7 years teaching behavioural teens. But I have grown more in the last 2. And that is because of Phoenix and because of Down syndrome.

Phoenix wasn't supposed to have Down syndrome. It didn't happen for a reason. But it did happen and we are living with it. Happily, I might add.




Tuesday, 2 October 2012

Are you there yet?

I had a difficult time deciding if I wanted to participate in 31 for 21. For those who don't know, 31 for 21 is a commitment to blog every day for the month of October to celebrate DS awareness month. I struggled with this because of the notion of celebrating DS. This tiny extra little chromosome has transformed all of our lives. It impacts all aspects of Phoenix's development and will be, in all likelyhood, the cause of her eventual diagnosis of an intellectual disability. It means we will see more doctors, consult with more specialists and be a part of a team of educators which will try to prepare Phoenix for an independent life. For all of these reasons, and so many, many more, I cannot bring myself to celebrate Down syndrome. I can't. I won't.

But I will celebrate Phoenix. There is so, so much to celebrate! I'm going to move into proud momma  mode right now and list some of Phoenix's accomplishments. This summer we spent a lot of time at grandma's house with very few toys and an iPad. This is what Phoenix learned:

Her colours, shapes, and vowels. We started on the rest of the alphabet which she now knows. She also can read about 10 sight words. She can identify hundreds of objects, animals, toys etc by choosing the correct picture on the screen. She knows at least 100 signs in ASL. She can say more words than I can count, and is attempting more daily. And she is a joyful, affectionate child who is such a pleasure to be around.

So tonight I am celebrating my Phoenix, who has Down syndrome.


On Awareness

October is Down syndrome awareness month.

This month I am challenging you to do just that: be aware.

Be aware of your judgments on other people.

Be aware of how inidviduals with DS and other cognitive disabilities contribute to your community.

Be aware of your language and how you speak about yourself and other people. In particular of the word 'retard', or 'retarded'. A term which specifically refers to those people, like my daughter, who have developmental delays or cognitive disabilities.

Just be aware.