I found true inclusion and now I don’t want anything less.

Rightly or wrongly I have decided that I want Wade to try mainstream activities first before we try disability specific ones. This is not a judgement on other parents choices, different kids need different things, it’s just the Plan A I have for Wade and then I’m prepared to go to Plan B if needed. But it’s hard to reconcile the high expectations I hold for him with the question that constantly rears it’s head in the back of my mind.

Are you doing this for him or for you?

It’s a challenge I constantly put to myself to try and keep myself in check when I plan a path for Wade. While it would be wonderful for me to high-five myself into next week for “achieving” full inclusion into 100% mainstream activities, it wouldn’t mean anything if Wade was struggling through them, constantly missing the message or just flat out not enjoying himself.

With all of that in mind however, I think it’s really important to ask “why not?” before I ask “can he?” when I’m choosing an activity. And so it was when I thought about swimming classes. I had thought about one-on-one hydrotherapy then I just thought…stick him in a class and see what happens.

When we first started, I was really apprehensive about it. Group classes…other parents and kids all much more physically capable than him. I wasn’t worried about how he compared to others…I know he has developmental delay and I don’t need him to be better than all the rest but I do need him to have the space and time to hear the instructions, and complete the movement in a way that doesn’t hold up the whole class. At the same time I need to give him the idea of what we are trying to do without rushing him.

We started at one class which was a disaster, the classes were disorganised and slap dash. Down syndrome had nothing to with it…I just hated the classes, so I decided to try Paul Sadler Swim School. Best decision I ever made. I went down for a tour and a chat and launched into the obvious about how Wade has Down syndrome and asked how much space would there be for him to learn at his own pace and blah blah blah….
It dawned on me quickly that I was the only one worried about Down syndrome here. It just wasn’t a problem. He was 18 months old but we would try him in with the youngest class and just see how he went.

His teacher, Alex was an absolute dream. We went at our own pace and I took my time with each element of the class and made sure that he was at least watching while I gave him a visual sign for each instruction. I constantly repeated the word for the movement at the same time as I was showing him. I was that crazy mother saying “Kick kick kick” over and over. There was this constant stream of noise coming from me as we did “monkey monkey monkey” then “swim swim swim”, “use your hands Wade use your hands”, but I really didn’t care. It was more important that Wade understood what we were doing and why. Each new milestone was met with huge celebrations and lots of cheering (from me mainly!).

Some days were easier than others and some days he loved more than others yet slowly but surely he started getting better. Alex would just appear to keep him on track and show him how each movement should look. Bit by bit over the last 12 months Alex and his other teacher Jacinda have helped me push Wade a bit further to test his skills and see what he can do.

When we first started we were given a big poster of all the levels that he had to reach before he could graduate to the kinder class. It seemed like a lot. Some of them he ticked off quickly and early, while others I started to wonder if he would ever do them. Every time he learnt a new skill we went home with a sticker to mark the occasion on the poster. I looked at the giant space that read “You have graduated to Kinder class” and wondered if he would ever get there. I couldn’t imagine him treading water, jumping off the edge safely or swimming without my help.

He started getting more and more stickers and I realised that with constant reinforcement and a bit more willingness for me to let go, he was learning really well. I will admit to letting go a few happy tears the day I took my hands away from his body and realised that he was swimming….on his own…(with floaties and a belt)…and loving it!

It’s not the 60s anymore…it’s time to update the advice given to parents about Down syndrome

I was listening to a story recently of a woman who became pregnant with her first child when she was just 16. My mouth sat open wide as she explained how hard she had to fight to keep her baby, being a “good Catholic girl” in the 1960s.
It was the norm back then. Young mothers pulled out of society and whisked ‘away’ somewhere to either have a termination or disappear for a while until the baby was born only to be forcibly removed and given up for adoption. These sorts of practices were commonplace and considered to be ‘for the best’. This woman had all sorts of so-called experts in her ear, from the local priest, the doctors, family and friends weighing in on what was best for her, the baby and ‘good taste’ apparently.
It’s not like that anymore. Society has realised over the past 50-60 years that it’s not the end of the world if a young mother has a baby, actually. We know that tearing children from their mothers and raising them in foster homes or boarding houses away from them is not the recipe for a well-rounded upbringing.

We know that so we don’t do it anymore.

In the story, the woman recalled how her son was called a “bastard” purely for being born to an unwed mother. She talked about how little support she had and how hard it was back then. This woman was a trail blazer, refusing to be told what was best for her and being a part of change that would bring us to the better place we live in now.
No one looks back at those times and considers it ‘Best Practice’. No one looks at the damage done to young mothers and their children as a result of forced separation and uses that to advise young mothers today.

We know it is better to support parents through challenges rather than demonising them for their choices. We know that when we stop telling children they are ‘worthless bastards’ who should never have been born, they grow up having more pride, confidence and control over their lives.

When a young girl becomes pregnant at 16 today…we don’t go looking to the 1960s for advice…

….so why are we still doing it with Down syndrome?

When parents are told prenatally their child has or may have Down syndrome, the information and advice given by many health professionals is wildly outdated and skewed heavily on the side of Doom and Gloom.

Selling Down syndrome.

I am Wade’s mum but I am his advocate too. I made a conscious decision when he was born, to presume that he can do anything. Not for one second will I think, “he has Down syndrome so he won’t be able to do that”. I will not think to myself, well, I won’t bother teaching him world politics, for example, because he will never understand it anyway. If it becomes abundantly clear that something is beyond him or not of interest to him or he is physically incapable of it, then I will strike it off the list….but not before. I’m sure this sounds delusional and to be clear, this does not mean I have him on a strict regime of study so that he will become a Rhodes scholar come hell or high water…. What it does mean, is that if he wants to play a sport or learn an instrument or study at university or live independently or get married or work in a shop or run his own business or travel the world or drive a car or anything, I will help him do it to the best of HIS abilities, not to the best of society’s expectations. That is the difference.

Lately though, I have come across an unintended consequence of my enthusiastic advocacy….

Milestone Rehab

It’s been two months since I wrote Milestone Junkie, about my lack of patience when it comes to working on new milestones with Wade. In it, I wrote about how Wade learns some skills quickly and others take ages and how keeping a sane rational mind about it seems to be harder for me to learn than for him to walk!

Well, my little guy has been royally spoiling me these last two months. The day I described, when he learnt to clap has been a springboard for his communication, confidence and personality. (Not that he needed a boost in personality but the cuteness level has now gone into overdrive…).

The timing of these new milestones and a big surge in his comprehension of the world around him couldn’t have come at a better time. Recently I’ve been feeling a bit frustrated with his developmental delay. Rationally, I get it. I understand all the hows and whys surrounding it. I know he will learn and do new things but lately I’ve been getting impatient. Maybe it’s the winter blues, when getting out of the house and doing things seems too much like hard work…rugging up in 20 layers of clothes, taking hats and umbrellas and staring at the radar to see whether you are going to get caught in a downpour as you venture out of the house. I know we have both been a bit bored around the house and I consider taking him to a play centre or a park with play equipment and then it hits me…

Milestone Junkie

As with every other aspect of my parenting story so far, Wade’s developmental delay has me swinging wildly from graciously understanding the reasons why everything takes longer to learn, to tearing my hair out over why he can do some things easily and not others.

Kids with Down Syndrome are usually characterised by some degree of developmental delay. When they are older, this is usually known as an Intellectual Disability. The reason for this is an Intellectual Disability is a specific, clinical term that is determined by an IQ test. When children are not old enough to be formally assessed this way, they are known to have developmental delay. Developmental delay means that our children can learn and can develop along the usual trajectory but everything takes longer to learn and often requires some specialist help along the way. This usually affects all aspect of development including the physical, the cognitive and the intellectual.

Before Wade was born, I remember being shocked at the approximate ages that children with DS achieve physical milestones. I couldn’t imagine a 9 month old unable to sit up or a 2-3year old unable to walk. It completely floored me. Like a lot of things I read during that time, this kind of information is general and each child develops completely differently. Wade, for example, came out of the gates racing. His gross motor skills were quite good. He has low muscle tone but he was quite strong and active. I would put him on his back and he would kick his legs about and wave his arms. It didn’t take that long for him to lift his head during tummy time and other DS parents and medical specialists were very encouraging about how well he was doing early on. This is when you get your first taste of that tempting, intoxicating parenting drug….praise. You get a high, you feel fantastic. Nothing gets better than this.