DS Awareness Day Part 3 – Edwardsville Family Photos
This is part 3 of our 3 part series about Down Syndrome for World Down Syndrome Day. If you haven’t already, check out Part 1 and Part 2!
Late last week I realized I had a small opening in my schedule this week. Normally, that would be blocked for something being neglected – like my laundry. But I’d been so conflicted when having to select a family for our free photo sessions, that I took the opportunity to book one more of the families!
I was drawn to this family because they are young – their son, Max – is just about 2-years-old – and he is their first child. Also…Max’s mama Sara has a baby in her belly! We all know how much I love a baby belly!
Thankfully they were available on basically zero notice and we met up Monday for a quick but successful photo session!
Max. Is. Awesome.
This was one of those session were while I edit the photos I sound like a broke record, “OMG he’s so cute. OMG he’s so cute. Holy crap he’s cute. Look how cute he is!”
Max is just learning to walk and has made the first steps toward talking! He is using sign language to encourage his communication and I am told he already has 15 signs!
Zac and I are both big fans of sign language for babies – regardless of any speech delays. He’s a fan because he understands, developmentally, how beneficial it is. (Zac is a speech pathologist – for readers joining us for the first time.) I’m a fan because I think it’s awesome!! But in all seriousness, if you have a little one, start thinking about working it in. Nine months is a good time to start with just a few basic signs.
Using signs helps little folks understand how communication works on the most basic level: make request = request fulfilled. And you can be confident that using sign will encourage speech, it won’t delay speech. That’s a common question or worry and it just isn’t true. Once your kiddo has learned they can manipulate your behavior in their favor by communicating, they will continue to acquire all sorts of ways to communicate!!
Anyway, enough of that tangent!! I asked Sara and Matt to share Max’s story with us. How they learned his diagnosis, how he’s doing now, that sort of thing.
Here’s what they had to say:
When I was 20 weeks pregnant we learned from an ultrasound that Max had a hole in his heart that wouldn’t close on its own. We were told that he would need surgery sometime in the first year of his life. We were also told that this cognitive birth defect was very common in children with Down Syndrome.
Knowing this I was offered testing that would verify the diagnosis but I decided against the invasive testing. As a family we decided to deal with the outcome, whatever it may be, after Max was born.
We found out that he did have Down Syndrome shortly after he was born. The diagnosis definitely turned our world upside down.
Max was born healthy even with the hole in his heart and it was decided that surgery wasn’t needed until around his first birthday. That was a very crazy and stressful time for our family as we were planning Max’s first birthday party one day and then preparing for his surgery the next.
Max fully recovered from his surgery in about a week. It is truly amazing how fast babies can heal from a major surgery like that, and now the only reminder of the surgery is a scar on his chest.
Max receives regular therapies to help him and his development and he is learning and changing everyday. Physical therapy has been tough lately as he is so close to standing on his own and taking his first steps. He is also learning to sign words and just started making sounds and recently said his first word, “apple”. (Yay Max!!!)
These are all typical milestones for any child and as parents we are both so proud of him. We know most of the challenges are yet to come and that is why it is great to have a community of parents to go to and get advice. Max and I go to monthly meetings with a group of mothers of children with Down Syndrome. We can ask questions and be open about our experiences with each other. Plus Max gets to play with other kids and he loves it!
One thing I wish people would do more in regards to Max and all children/people with disabilities is ask more questions. I am not ashamed of my son or the fact that he has Down Syndrome. Like any parent, I love to talk about my kid and I am happy to answer any questions that anyone has about him or about Down Syndrome in general. Matt and I have never known anyone with Down Syndrome so this experience is new to us and we have educated ourselves as much as possible.
Max is taking swimming lessons now and he loves being in the water, we also go to monthly Kindermusik classes and he has a great time with all the other kids. Max is a wonderfully happy and easy-going kid and I know he is going to be a great big brother.
He certainly is! Thanks so much for sharing your story!
I have to tell you – at the end of our photo session – Max gave me a hug. I swear to you, that was the highlight of my week! He is a very sweet and affectionate little dude : )
Thanks so much to everyone who read our series of posts today!! Just by taking the time to read, you’ve done your part today! I hope you’ve learned something and I hope you put what you’ve learned into action in your daily lives and within your own families.
A huge thanks to the families who participated, to all the families who expressed interest and a shout out to the Riverbend Down Syndrome Society for helping get the word out!
We will also be offering a free session and blog series on Autism on April 2 for Autism Awareness Day! Details here (though the deadline to submit email ‘applications’ has been extended, so if you’re interested, please email us!) So stay tuned and spread the word!
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