Down Syndrome Association of Ontario Conference

Sheeesh, I know it's been a while .... AGAIN! I really need to start dedicating more time to my neglected blog.
We just returned from an exciting weekend at Great Wolf Lodge in Niagara Falls, Ontario. We were attending the Down Syndrome Association of Ontario conference with a ton of other families from around the province. It was mine and J's second time at the conference and G's first visit ever to GWL. If you haven't been, you're missing out. What fun we had! We met some new friends and reconnected with those we've seen at a couple of other conferences over the past year and a half.
There were several meaningful  moments for me at this years conference, even though I was feeling rather distracted by a soon-to-be busy two year old who wasn't feeling that great and the fact that I was constantly trying to figure out when I could make time in the weekend to hit the waterpark. I was totally looking forward to the keynote speaker, Dan Kulp, who has an amazing story. He grew up with several siblings with Down syndrome and has more recently adopted children with special needs. In fact, I was excited to find out that he's a Reece's Rainbow dad! Anyway, Dan surely didn't disappoint. The fact that he's a commedian gave him the much needed street-cred from daddy Bakes. He had the room laughing and at some moments, at the verge of tears because of his powerful story about growing up with sibilings living with Down syndrome and his journey through international adoption. Very inspirational and a real-life hero in my eyes. Some of us do not choose the life of having a child with Down syndrome but fully embrace it once the situation presents itself. But to go out and purposefully choose incredibly worthy children is another thing. That to me is a hero.
I was excited to re-connect with another mama with a little guy living with Down syndrome. What a brave woman she is! Julie Contini was the author of the article 8 Truths about Special Needs Parenting in Canadian Living magazine. If you haven't read it. You should. Anyway, we chatted about how putting yourself "out-there" can make you so vulnerable to criticizm and sometimes the unwated opinions of people towards individuals with Down syndrome. Fortunately, Julie hasn't recieved any negative feedback on her article and I'm not surprised! The article spoke the truth about the ups and downs of parenting a child with special needs and it's important that people know.
There were several break-out sessions that we could attend throughout the conference and I kind of stubbled across one of the most "real" sessions ever. The title was "Coping" by Dr. Lise Poirier-Groulx and I was a little unclear whether that meant our children coping or how parents cope. Typically, the sessions revolve around ways to support and enhance the lives of our children but  much to my surprise, this session was strictly for parents. What a breath of fresh air to hear the real truths and stories of other parents and how they are continuously coping with the needs of their family. She began the session talking about grief. You know it's gonna be a tear jerker when grief is the first thing thrown out there to discuss. Well, for any parent of a child with special needs, it's no shocker that we experience greif. Life. Long. Grief. So, Dr. Lise, who is a psychotherapist herself, went on to lead the group in a discussion on how to cope with grief, how to manage sibling needs and issues, having clear family and couple boundaries, and how it's perfectly alright to be the "good enough" parent. In fact, she even suggests that being a "good enough" parent is being the best parent you can be. One that listens to the needs of all the members of the family and making decisions based on that. Not based on what society deems as the "perfect parent". Society may not agree to all the methods you use as a parent with a child with special needs but as long as you're doing what's best for your family and their safety, then that's A-OK. If you'd like to know more about Dr. Lise, check out the article here.
Here are a few highlights of our weekend....

                                                           Mama & J visiting the falls.

                     Family pic in the lobby of the hotel. The animals are all animated....it's pretty neat!

                                     Daddy Bakes and Monkey J at the Halloween Dance Party.
                                        Definitely the highlight of the weekend for our party boy!


Oh and one more thing.....



                          HAVE A GREAT WOLF DAY!

The Look

Our little family of three went out to celebrate my husbands birthday yesterday. We celebrated early because we won't be together to celebrate on his actual birthday - Aug. 8th. Early on in our dating relationship, my husband and I learned that being a military couple meant sometimes doing things a little unconventionaly. So we've celebrated many birthday's, Mother's/Father's Days, Thanksgivings, etc. before they actually occur. We've learned that it doesn't matter what the date on the calendar is, it matters how and with who you celebrate special times with.
Anyway, so we celebrated this big birthday by going swimming as a family. Joshua loves to swim and it's a great activity to help with low muscle tone. The pool was packed with families as it was a rainy day on a long weekend. So we had to navigate ourselves around tons of families swimming around.
Now, I've heard many times from other families in our Down syndrome community that they often get stared at. I've not experienced this myself....until today. It just felt that people were looking at us. It was strange. I didn't mention anything to G while we were swimming because I thought maybe I was just being paranoid. I'm sensitive about these sorts of things. Like, very sensitive. It makes me sad to my very core. I cry about it. I think about it to the point where it's probably not so healthy. But it's what I do. It's how I cope. It's how I continue to develop a new perspective as a mother of a child with special needs. So, I just tried to ignore the fact that I felt a few sets of eyes on our family. Later on while we were having dinner, I asked my husband if he noticed people staring at us. He doesn't seem to be as sensitive about this sort of thing, so I thought he probably didn't. But he actually did notice it too. He said that we are probably going to have to get thicker skin on that kind of thing because it is inevitable. Our family is "different" than the norm. It's true we will have to develop thicker skin. But that doesn't make it hurt any less.
So, if you're one of those people that gives "the look" to families because of something that's different. Please stop. It's more hurtful than you will ever know. We do notice. We know our family is awesome!

On a similar note, I sometimes wonder if strangers know Joshua has Down syndrome. I wonder if it's obvious. We are just so used to his adorable face that we don't see it. Since his birth, we do find ourselves noticing individuals with Down syndrome more than before but that's because we now know what to look for. We know the features. We know the characteristics. But we didn't before, unless it was obvious. So I'm wondering if strangers know that our fine young son sports designer genes.  I know that when we are out in public, people are drawn to Joshua. They love to play little games with him. Love to make him laugh, which is not hard. Love to comment on how cute he is, which he is. But are they doing this because they can tell he has Down syndrome or are they doing it because he's just an awesome kid? I probably will never know the answer to this question. I do choose to believe that it's because they see that he's such an amazing kid.

Mr. Noodle

Joshua is part of a physio therapy group for "pre-walkers" on Friday mornings. It's facilitated by our physio therapist and her co-worker. We haven't been regularly attending because of work and so this summer, we've been trying to go as much as possible because I'm on holidays.
The kids that participate have all sorts of abilities. Another one of our friends from the Down syndrome community attends. Many of the other children have CP....I'm kind of just assuming this because I don't really know. And in all honesty, it doesn't really matter to me. We think they are all great and it's encouraging to see their accomplishments too.
The session starts with the kiddies on the mats with the therapists and parents. There are warm up songs with actions, like If you're Happy and you Know It and a few others I can't remember. We also do ball work on excersise balls to strengthen the core muscles that kiddies with Down syndrome often need to work on. Then we work with benches to practice standing to sitting, kneeling to standing, etc. We usually finish off with a game of Monkey See, Monkey Do. Joshua is a bit young for this game but it works really well with a lot of the other participants. Basically, there are flashcards with a monkey on it putting his body into different stretching positions and the kids must copy the monkey. The kids really like it.
Once all of the mat work is finished, the therapists set up a circuit of activities that you're free to participate in. These include a tunnel to practice crawling, foam stairs to climb, trampoline, different toys to practice stepping on, scooters, and walkers. Every activity is challenging and focuses on helping the participants develop their walking skills to the best of their ability.
This past Friday, Joshua and I attended and it seemed like a complete waste of time. I woke up feeling like I was dragging along and struggling to get the day going but I knew that we needed to go because this would be the last session we could attend this summer. So we got all packed up and off we went. There was only one other boy there with his mom as the attendence has been all over the place with summer holidays. It seemed like from the get-go Joshua wasn't up to physio on this particular day. He wasn't interested in staying on the mat, was trying to grab the physio's papers and he was just totally distracted. Whenever I would try to get him to stretch, he'd turn his body into a noodle and flop around. Now for a kid who's already "floppy" to flop even more, this is quite the challenge! It's as if the joints in his body can totally dislocate and he can get out of whatever position you are trying to hold him in. So I've been affectionately calling him Mr. Noodle whenever he starts to flop around. It helps me take things a little less seriously.
So basically, after the mat work I decided we were finished with physio for the day. I wasn't going to push it. Joshua obviously wasn't up for physio and I know it's a lot of hard work for him to do these activities. So off we went. I was a little frustrated that we accomplished very little and appologized to the therapists for his lack of interest but they totally understood and it wasn't a big deal. I was just a little deflated. It was one of those days where I felt that this was all a huge wast of time and I had better things to be doing. One of those days where I will freely admit that I wish we didn't need to be part of a physio group. Just a little.

Fast forward to Sunday - Joshua, G and I were in our backyard in the kiddie pool splashing around. Suddenly, out of absolutely no where, Joshua picks himself off the ground and STANDS UP!!! Like I'm talking, on two feet. Not touching anything. Not using anything to grab on to and pull himself up with. My husband and I just stared at each other and at Joshua. Joshua just stood there like "hmmmmmmm this is interesting that I can stand on two feet". He's NEVER EVER EVER tried this before. We have NOT practiced this is any way, besides standing leaning against a wall. I suddenly started crying and cheering and we were EXTATIC!! Then he continues to do this standing/sitting thing for the next half hour or so. It was absolutely amazing! This little trick has now become part of his repatoire that he's quite proud of himself for. And rightly so. It's a huge accomplishment. He even throws in some clapping when he falls down. The kid just knows exactly how to encourage himself and encourage his weary mama.
I'm so proud of our little Doodlebug. He's just the most wonderful kid. So determind. So strong. And knows just the exact moment he needs to throw his mama a bone to show her that he is picking up on things, he is progressing, and most importantly he WILL accomplish goals and milestones when HE is ready.
Seriously. Love. This.Kid.
So, I'm feeling rather proud these days. I'm ALWAYS proud of our boy. But this weekend, my pride is over flowing and I feel like we can accomplish anything.

Choosing to Speak Up

"It's not about pro-abortion or pro-life. It's about pro-humanity"

I'm choosing to speak up. Are you choosing to hear?

http://www.youtube.com/watch?v=Vvl7I-OlWWE&feature=plcp

Miracle Baby!

Don't mind me, I'm just going to brag here for a moment. I desperately need to tell you how incredibly wonderful and amazing my son Joshua is. I know what you're thinking, every mother thinks their child is wonderful and amazing. But let me tell you, my son REALLY is. In fact, he's actually a miracle. No joke. I'm totally serious. Read on to find out why...

Did you know that over 90% of babies diagnosed with Down syndrome prenatally are aborted? Just think about that statistic for a moment. 90%. That's a lot. In fact, I believe that's 90% too many. That means that for every one wonderful and amazing Joshua you see, there are in fact 9 other wonderful and amazing "Joshua's"  you don't see. You will NEVER see. This disturbes me deeply to my very core.

Just imagine how many families don't get to experience this

or this

or this

or this

How sad is that?!? These people are missing out on a precious life. A life that is full of excitement. A life that is surrounded by a community of family and friends that love every ounce of his being. But most importantly, A LIFE THAT IS WORTH LIVING! I can't stress this enough. Joshua's life is worth living and 100% of the lives of individuals with Down syndrome are worth living.


 

Where do I even begin?!?!

I've decided to re-invent myself here on the ol' blog. It's been a while that I've been on and decided to switch things up a bit. I've been creating this blog in my head for a while now and "storing" things away in my memory for future blog posts but I need to be honest here - this is difficult for me. I struggle to imagine that my family and friends will REALLY know what goes on in this head of mine. So for right now, I think this will be staying unpublished until I get enough courage to go public. So please bear with me.
After listening to the wonderful Kelle Hampton of Enjoying the Small Things on a National Down Syndrome Society webinar today, I've decided that it's time to get this blog started. Or re-started in this case. So welcome! Or welcome back if you were a faithful follower before. Although, I don't really think I had any followers besides my own mother :o)
One of the insights that I gained from today's webinar is that we all have an opportunity to advocate using our own gifts and talents; through whatever avenue we may choose. I believe it is my responsibility, as a mother of a child with special needs, to show the world that we all live valuable lives and we all have something great to contribute regardless of how many chromosomes make up our bodies.
So thank you Kelle Hampton, for your inspiration to re-create this blog. My hope is that I can use it as a tool to advocate, to educate, and to share our story.

*Post created July 2012. I'm not sure why the date keeps saying October 2011.*