Why I heart Down Syndrome Victoria

The first few weeks were were certainly anxiety ridden but joining a mother’s group and getting involved with Down Syndrome Victoria programs like the My Time mothers group saved me from myself. Meeting new people in a group setting has never been my forte, though. I’m usually badly behaved in group settings as I find them unnatural and formula driven. I can’t stand groups where you have to do trust building exercises or turn to the person next to you and think of three things nice to say about them. Ice breaking exercises designed by someone with a Public Relations degree but no idea how actual people actually talk to each other. If I find myself in these things against my will, I usually leave my “appropriate tone and comment” filter in the car. Therefore I was skeptical as to whether I would get past the first week but I knew it would be a great benefit for Wade to have some social networks and I hoped I would get some benefit out of it too. It was important to me that he formed friendships with the local kids who didn’t have DS as well as the ones that did.

My first contact with other parents was at the New Parent night that DSV put on. Wade was 5 weeks old and unfortunately Mick couldn’t go as he had to work that night. I walked in there and immediately felt that same sense of belonging. The families were from all over the state, from different backgrounds and ages but we all had this thing in common. Sue, the New Parent Coordinator ran the night and it was nothing like I imagined these meetings to be. Sure, we went around the room and introduced ourselves, but we just said as little or as much about our circumstances as we wanted to. Real people talking to other real people about this really important thing we all had in common. It was relaxing and informative. I sat next to a wonderful couple and although we live on opposite sides of the city, we still catch up and let our boys hang out together.

Then I joined a local mothers group. We were all put together by the Maternal & Child Health Centre. All first time mums, all of our bubs aged within 7 weeks of each other. Again, I thought that mothers groups would be a group of alpha females all sitting around furiously competing with each other for the title of Greatest Mother Alive. It wasn’t like that at all. We were all different but we all had that wide eyed, “what the hell are we doing?!” look. It was great to bounce ideas of other mums and see what works and what doesn’t. In the early days, I struggled to see any difference between, Wade and the other babies. Physically, he seemed on par and was doing all the things they were doing. He also seemed to love it. He took a while to lift his head when he was very little and I was given lots of ideas to try and help him. I would give him lots of tummy time and try to get him motivated with rattles and sounds but at our first group meeting, I sat next to a mum whose bub was lifting her head easily. Wade was obviously watching because the next day, he did it himself. I got the sense that he would learn a lot more from the kids around him.

Now that he is older, the developmental delay is more obvious. The other babies are walking and starting to talk now but Wade is watching and learning. I have to admit that occasionally I get pangs of…well, it’s not jealousy…I’m not sure there’s a word for it, but sometimes its just plain hard to watch your kid being the last to do everything even though I know he has a reason for it.

That little voice pops up again, half accusingly….”Did you do enough?”

Most of the time though, my local mothers group is a time where I don’t really think about DS. I’m just a mum sitting around discussing problems or ideas that are common to all of us. I hope Wade will make some life long friends here.

By far though, the biggest support to me has been my My Time group which is coordinated through Down Syndrome Victoria. I turned up at my first meeting and it was like walking into my own home. Instantly, I was welcomed by all the other mums there. They felt like family even though I didn’t know anyone’s names yet and I knew I would be friends with these people for the rest of my life. All the mums who had older kids at school sat down with me and showed me photos and spoke about them. All the other mums with toddlers or babies chatted to me and we shared our stories and circumstances.

It’s free flowing, informal and no ice breakers or “getting-to-know-you’s” in sight. It’s wonderful.
It is here that I was able to put together all the pieces of how the government services actually worked in practice. I got advice about the best way to navigate it and what I should be doing. We all share tips and tricks that we pick up from our own physios or speech therapists, websites, apps, online groups…. We talk about what has worked with our kids and what hasn’t. I learn about how far the services and attitudes have changed over time. I learn about how to navigate issues at school or kindergarten from the mums that have done it all before.

That sort of help is invaluable.

It’s here that I see children at various ages and what they are achieving developmentally to get a greater idea of what to expect. Seeing all the kids at different stages with different strengths and weaknesses helps to turn off the chatter and doubt about what Wade should be achieving and when. It’s one thing to read a book that talks generally about the time frame in which milestones occur but it is most helpful to see a variety of real kids all as different from each other as you and me. But mostly, the other mums are just great people whose company I genuinely enjoy.

The greatest thing about the Down Syndrome community is the generosity and sense of family. Down Syndrome Victoria has been instrumental in that feeling for me. The events that are put on throughout the year and the programs that are available for families such as ours all make me feel supported and connected. I can ring anytime for anything or reach out to any of the amazing parents I have met and know that I am understood and valued. It is a sense of community that I have never experienced before and would be lost without.

When Wade was 5 months old we had the great pleasure of being asked to be a part of an awareness video for DSV. Given that only 10% of their budget is from government funding and the rest has to be found via donations and fundraising, I leapt at the chance to be a part of it. They are a wonderful organisation that is vital to families such as ours so please support them if you can.

Check out the video with lots of shots of his beautiful blue eyes here.


3 thoughts on “Why I heart Down Syndrome Victoria

  1. This has made me extra proud of my work and efforts during my time at DSV and I am so glad you were able to be part of the video – Wade is gorgeous!

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