What am I Celebrating this week?

What am I celebrating this week?

Peeing on the potty.
Snuggling on the couch while reading books and drinking milk.
Climbing up and down the stairs independently.
Learning the new routine at play gym.
Giving hugs and kisses.
Identifying the word "best" on the book "Red is Best".
Counting to 8 in order on her own.
Eating a whole hamburger.
Attempting to say her name.
Starting to regularly attempt sentences. They are not always intelligible, but it is the attempting of them that I am most proud of.

That's what I am celebrating. What about you?

Photo bomb

 Here's some photos from the last few months that I hadn't downloaded yet. And if anyone can tell me how to get the time stamp off of each picture on my lumix camera I'd be thrilled if you told me.

This is from Christmas time when my mom was visiting from Toronto. We made gingerbread cookies and decorated them together.

 Surprisingly, the icing was not done by Phoenix. 

An artist I am not.

And a few from Gymboree

Potty Training - Day 1

I'd say that the first day of potty training was a total success! We got 5 pees on the potty and Phoenix knows what we want her to do when we sit her on the toilet. The time where she sits and fiddles around before peeing has dramatically reduced from about 15 minutes to 1-2 minutes. This tells me that 1. She has figured out that she is supposed to pee when she sits on the potty and that 2. She is gaining better control of using her muscles. Both of these accomplishments are really good news in the potty training process!

I have read a lot the the low muscle tone can really delay potty training in kids with DS. Having low tone can mean that the way that our kids feel their muscles can be reduced. Phoenix is now at the upper end of the age range for potty training of typical kids. So the fact that she is showing interest and some level of control is very, very good news.

Will she be potty trained for when she goes to preschool in the fall? Who knows? But 5 pees in the potty is something to celebrate!

Potty training

We've been introducing the idea of potty training for some time now. Phoenix has been watching the Potty Time dvd since she turned two and we bought a potty insert shortly thereafter. She can say potty, she can sign potty, and in general she feel really positive about the whole potty experience. We started a routine where as we got ready for bath time every night Phoenix sat on the potty. The only mistake about this is that now Phoenix believes that potty times happens butt naked. Oops. We'll chalk that one up to first time parenting missteps.

She's gone through phases where she liked to sit on the potty for a while, where she wanted to get on and then off and now where she sits on the potty until she pees or poops. It's been a progression. A process. A learning curve. I finally feel that we might be at a place where we could make a commitment to really attempt potty training. Her day home provider let me know that she has been expressing interest while there and has peed on the potty a number of times in the past week.

So last night we bought our first box of pull ups. I feel like these will be a good transition for Phoenix where she can practise (with help) pulling her pants up and down while we take her to the potty each hour. We are going to keep it really positive (we clap and cheer when she successfully uses the potty) and see if she will eventually start initiating (requesting) trips to the bathroom on he own. Obviously we are going to be initiating first but the idea is for her to become more aware of what is happening with her body.

I had originally planned to initiate potty training this summer, but since Phoenix has been using the potty successfully before bath time, I can't see the harm in trying now while she is showing interest. Strike while the iron is hot and all that.

By the way, Sunday is the day we are going to start. We have nothing to do that day so we have the time to commit to this enterprise. I'll let you know how it goes.

DS catch phrases

I hate overused phrases. I hate them. When I hear them, they make me cringe. One of my 'favorite' examples is "If I can help/save just ONE person from (insert grievous experience here) it will all have been worth it" Puke, gag, cough, vomit. It is just so...trite. And self serving. And used a million times. Can't people come up with something better than this? Anything?

Down Syndrome catch phrases drive me equally as crazy. "More alike than different" "My child isn't defined by DS" "My child is a person first". I cannot even tell you have many times I have heard or read these phrases in the past 3 years. I'm sure they aren't as obvious or annoying to those outside the DS community, but to me they are like nails on a chalkboard. "My child is a person first" is the worst. Um, of course they are a person. They are a very small person with a unique genetic makeup. Can anyone honestly tell me that they think that our kids are perceived as anything but a human being?

And with a whole community of moms and parents who blog and write about our experiences with DS, can't we come up with anything more original? Or that even makes sense?

"More alike than different". Really? Do typical kids have a team of professionals who oversee their care? How many typical parents can claim to consult with OT's. PT's, SLP's, EI, a pediatrician, an optimologist, an audiologist and a family doctor? This year we have also seen a cardiologist, an ENT and a sleep clinic. And my daughter is healthy! We just monitor her progress! How exactly is this more alike?

Why can't we just be honest? Our lives with our kids are more complicated. It's not bad. It's not unmanageable. But it is different than raising typical children. It is. I think we come off as disingenuous when we claim otherwise. And it is a criticism of our community that has merit. Because when we claim that it is just like raising typical kids people think we are lying or minimising the struggles that our children will have in life.

It feels normal to us, because we have adapted to our new normal. But it is not alike. And I for one am not going to claim it is.

Here's an idea. Lets come up with new slogans and descriptions of our kids. Here's one I thought of yesterday: "Down syndrome: as individual as you or me". How about "Down syndrome: see the ability".  Phrases and descriptions like this are honest, authentic and more representative of the reality of Down syndrome today. It doesn't minimise any of our kids struggles and it doesn't marginalize them or set them apart.

Oh, and if anyone wants to pass these phrases on to a National DS group for marketing purposes, please do, but I'd like credit please. And royalties.

Could-have-beens

I read another moms blog today that made me sad. The entire post was about grieving for the mom she could have been if her child was born without challenges/disabilities. Her child was 5. I felt sad because I can't imagine how it is to spend 5 years wondering what could-have-been and mourning the child I didn't get. 5 years. Wow.

I frequently think back to the first year of Phoenix's life and the heart-wrenching grief I experienced. I wonder if it was so difficult because of how fully I embraced the sadness. It was difficult for me to focus on much else and in the end I needed to see a counsellor to move out of it. But when I had thought every thought about her future, and felt every emotion, and processed what it all meant to me, I was done. It was gone. I could move forward free of the what-if's and what-should-have-beens. Because these have to be the most pointless, self-defeating thoughts that we, as mothers of children with disabilities, can have. These thoughts are toxic, and soul damaging and they keep us from fully embracing the child that we have been given.

I also read this quote from another mom who has two children with DS. "Down syndrome is not bad at all. It’s not ideal, and most of the time it’s unexpected and unwanted. But it brings many good things for us." This is my experience of Down syndrome. It's not ideal. It was very, very, unwanted. But it has brought me and Husband more happiness and joy then we could ever have imagined.

Every single day I look at the wonder that is my child and feel grateful for her existence. I love her and embrace her fully. Her challenges, her delays, her strengths and her quirky little personality. I embrace her. There are no could-have-beens or what-ifs. There is only living in the moment of life with an almost-3 year old who drives me nuts and fills me to the brim with happiness, often within moments of each other.

I feel equally grateful that I have been able to leave the could-have-beens in the past, where they belong. It has allowed me to enjoy and fully appreciate the experience of raising Phoenix. I hope that other mom gets there too. It's a beautiful place to live.

Big Strides

I'm not sure if I just haven't been noticing the changes, but Phoenix seems to be making some really big strides lately. She has finally, after 6 months of work, figured out that sitting on the potty means we want her to pee. She loves everything else about potty time and has it down pat. The sitting, the throwing toilet paper in, the flushing and the washing hands. Everything except the peeing. But for the last week every time she has sat on the potty she has refused to get off until she pees. It often means sitting and waiting for 20 minutes or so until the feeling comes on, but she has been doing it! It makes  me feel really optimistic about trying to fully potty train this summer. The summer time is a good time for us to potty train because I'll be off work and i can really take the time to take her to the potty every hour or so. Of course, she can't yet pull her own pants up and down yet, but one step at a time, right?

The other big leap is in language. I am noticing more and more that Phoenix is putting two words together. And the more I notice, the more I am consistent with prompting her to expand her expressive language when she falls back to one word requests or sentences. I feel like we are really working as a team to help build her language skills. To use a very overused term, it feel like we have synergy. It makes me feel really warm and fuzzy inside.

Of course there are other areas which are not progressing at all. Eating for instance. Getting this child to eat fruits and veggies is really hard work. One of my recent shining examples of parenting involved Phoenix crying and me shoving a piece of orange in her mouth while exclaiming "It's not poison! It's just fruit!". Sigh. Not my finest moment, I'll give you that.

Big strides indeed.

Obnoxious

Is it obnoxious to brag about your kids accomplishments? Am I that mom, who talks about how great their kid is and only serves to piss off those around her who get tired of hearing how wonderful Phoenix is?

I don't know, that's why I'm asking. I talk to moms of typical kids pretty openly about how great Phoenix is developing. They seem to appreciate the updates and obvious pride I have for her. But with fellow DS parents I find I try to hold back a bit, at least in person. I don't want anyone to think that our children's development is a competition, because it is not. The fact that she is progressing well doesn't imply anything other than she is progressing well. I don't work harder than any of the other mom's I know to help my kid progress. We all work hard to help our kids and they all progress at their own rate. I think all our kids have bright futures. But I can't help but wonder if it pisses them off anyway.

Phoenix had a great assessment today. We went to our child development centre and met with the SLP first and then the PT. The SLP performed a standardized test on Phoe to measure her speech and language ability and then charted her results into percentiles. The results were amazing. Phoe falls at the 80th percentile for speech language, which is just under the normal range for her age group. So this is a mild/moderate delay. And yes, this is me jumping up and down with excitement that my child has a mild/moderate delay. Because you know what? Most children with DS have severe language delays early on. Language frequently takes much longer to emerge and progress in our kids. So the fact that she scored as high as she did is phenomenal.

But, we needed the PT assessment to come out lower in order for Phoenix to qualify for her preschool funding. To receive this funding children must have a severe delay in one area or mild/moderate delays in several areas.

Her PT assessment went well but she still only scored in the 2nd percentile, mainly because she can't run or jump. Surprisingly, this is considered moderate as well. Which makes me wonder, if  98 out of 100 children score higher than Phoenix on this test and this is considered a moderate delay, exactly how flipping delayed do you have to be to be considered severe?

So Phoenix has several moderate delays. That's wicked. And I am not being sarcastic. Because I know she is delayed. No one needs to tell me this. I can see with my own eyes that she does not have the same skills as the other kids at play gym. And she doesn't talk as well as they do. But she is trying, and learning and growing and having fun. And her delays are not considered severe, although I would love her just the same if they were.

So today I am celebrating. I celebrate her strengths, her weaknesses, and her presence in our family. Life is good. And if that is obnoxious, I don't care one little bit.

January Update

I know it's been a while since I've written and updated, but life happens, and I get busy, and there is a busy, lovely, and demanding almost-3 year old who takes up much of my free time.

We are getting ready for Phoenix's next transition in life - beginning preschool! Her assessment for funding is happening this week. We meet with the SLP and PT to do some kind of assessment and to show off her rocking skills.

Her speech is really plugging along. She is getting better with putting two word sentences together such as "help please" or "more please". What is exciting about this is what these improvements imply. I have read that children need to have a vocabulary of over 200 words to start putting together two word sentences. I know Phoenix's vocabulary is good, but I am thrilled that it is this good.

She is also getting better about enunciating two syllable words. She still consistently says the second/last syllable of longer words instead of pronouncing the the entire word, but from time to time she says a two syllable word very clearly.

We have been doing a lot of counting recently. We consistently count the stairs every time we walk up and down. Phoenix can now consistently count independently from 1-10 with very few errors - she frequently misses 9, but we are working on it. Sometimes I sign along with her counting as a visual cue, but not always.

Phoenix is also getting better with her pretend play. She likes to go to her kitchen set and pretend to wash her hands and drink from the cups. She likes to go to her bed and pretend to go to sleep. She also likes to throw her books down the stairs and dump out her blocks.

She's doing great, but she is still a 2 year old.