Tuesday, 19 March 2013

March Photo bomb

I haven't posted any pics in a while, so here are a few recent photos.

The first picture is a "Look! My kid is so gifted!" picture. I feel a bit weird saying that when she will likely be categorized as ID later in life...but whatever. I'm a proud momma. This is a pic she drew on her magnetic drawing board.

It's pretty good for a 3 year old with low muscle tone, if I do say so myself.

It was Miss Phoenix's birthday recently and she is now 3! I have a few pics of her in her party dress with some of her fabulous new gifts. The biggest present was from her extended family and a bright spanking new pink Mini Cooper. Can you think of anything more fabulous than that?

She got some new open the flap books and was already enthralled.

She also got a little backpack that she loves, loves, loves. Here it is:

That's it for now. Hopefully we will get some new photos done when we see my lovely and talented twin sister over the Easter holiday. Hint, hint.

Monday, 18 March 2013

The path to acceptance

As I've written about in the past, the path to acceptance was a pretty bumpy journey for me. It took me a long, long time to be ok with DS. I wasn't able to join any of the DS groups or functions becasue the 'reality' of older children and youth with DS was too much for me to handle. Part of what upset me about seeing these kids and adults was how low functioning some of them appeared to be. That it was obvious that the world was passing them by. That they weren't participating in it. That they didn't have relationships outside of their caregivers or relatives. And although lives have value in and of themselves, and that low functioning does not = low value - it is still upsetting picturing this as Phoenix's future.

As I have gotten to know Phoenix and seen her bright, inquisitive mind open and grow, I have realized that this is not her future. She is bright. She is funny. She can learn. She participates in her life. The world does not pass her by. She is engaging to others and brings them into her world.

Having realized that Phoenix's future is open and bright, I have a much easier time joining DS activities. We went to a lodge this weekend with our local DS community. And had a fabulous time, both as a family and as a community of parents whose children have this extra chromosome. It's nice to be part of a group of people who 'get it'. Who have similar experiences with the challenges and joys of raising children with DS. And who embrace our kids for who and what they are - instead of what they aren't.

One of the attendees was particularly interesting to observe. She was 25 years old and had DS. She was petite, well groomed and put together and wore fashionable clothes. She was really very pretty. She had poise. Poise! She attended with her brother and his family.  Husband spoke to the family on Saturday and asked if the brother was guardian. Nope. This woman lived with her mother, but was more than ready and able to live on her own. Her mother just wasn't ready to let her go yet. And she in no way was a burden to her brother or to her mother. She was a full participant in her life, her family and her community through her volunteer work. This is the future I see for Phoenix. This is why I have hope.

Monday, 11 March 2013


My concern this week has to do with the EI/therapy issue that many bloggers are talking about recently. Something that many parents with kids with DS are realizing is that therapy and early intervention is not a magic panacea that will make our kids"catch up" or be "normal".

My views on EI have changed greatly since Phoenix was born. At the beginning I took every available service offered to me. I felt like I needed to do this to give Phoenix the best possible start in life. And I don't think this is an unusual feeling to have. I think it is a very common to approach after our children our born - to mitigate the damage the extra chromosome does to the body. Our children have surgeries to fix hearts, to fix intestines and colons, to remove tonsils and adenoids, to put tubes in their ears. All in the hope to mitigate the effects of the extra chromosome. Why wouldn't we engage in EI to mitigate the developmental delays?

What I have discovered in the last 3 years is that nothing we do in EI mitigates the developmental delays. Nothing. Our children will be delayed, but they will get to each milestone in their own damn time. Some earlier, some later. And all the damn therapy in the world won't get them there sooner.

So why are some many parents killing themselves to fit hours and hours of therapy into their day?

I'm not sure. Mommy guilt? A subtle innuendo from moms whose children are not as delayed that this is the magic bullet to ensure milestone are being met? Pressure from EI organizations and therapists  themselves that children need to be constantly working on skills? I really don't know, but it disturbs me when I see parents of newborns asking about how they can sign their children up for expensive neurodevelopmental programs that have never been back up with any research.

I guess since backing away from therapies, and seeing Phoenix flourish regardless, that I have become a little disenfranchised with this push for EI. I have been very, very, grateful to have the DS team to go to to get tips about how to work with Phoenix or new strategies to try to improve her eating. This type of support has been wonderful so that I am not at home spinning my wheels. I find that all it requires of me is to be a bit more mindful during my interactions with Phoenix to try to extend her language or make an effort to show her how to do things for herself.

The Realities of DS

Phoenix recently came down with a cold/flu that hit her hard and lingered around. Two weeks later and she still has a runny nose . It's been a bad cold and flu  season, everywhere. It's even make the news. But this is the sickest that Phoenix has been in her life with high fevers on and off for 7 days. As a mom, this is really concerning. No one wants to see their baby be sick for this long.We made a trip to the family doctor, a trip to urgent care and then a trip to emerge to find out what the hell was going on.

It was a para influenza virus as it turns out. A bad one. The doctors have been seeing the fevers linger and the virus taking a long time to work it's way out of the kids systems.

But as a mom of a kid with DS I have a little bit more to worry about than other moms. Because in our population of kids Leukaemia is 10-20times more likely to develop and the median age of onset is 3-6. Phoenix turns 3 next week. And often the symptoms of leukaemia are similar to that of having a virus: fever, irritability, crying due to bone and muscle pain, and petechiae. Petechiae are small burst blood vessels that come to the top of the skin, and Phoenix had a small patch of this that appeared the week before her virus hit.

I'll admit it, I was worried. I brought her into emerg at the Children's Hospital because I wanted them to run a blood panel to check her blood for blasts. The blood work came back totally normal, so it was a bit of an overreaction on my part. It was great that for once my mommy gut was wrong.

We're still good, and Phoenix has bounced back beautifully. But a little nagging fear remains.