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.

image

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!
Continue reading

Life is therapy too…

I’d love to be that kind of mum you see online, who has shelves full of interesting things that enliven and inspire their kids….but I’m not. I gaze wistfully at photographs of clean children engaging with wide-eyed wonderment at the quaint, colour coordinated activities devised by their talented mothers. I have evil fantasies of the 1,647 other photos taken before they FINALLY got one that looks like the kid is…

a) actually using the activity and
b) enjoying themselves.
(Yes, I’m spiteful like that…)

Sensory buckets, cloud dough, button snakes, flash cards…..I’ve seen them all. I keep trying them every now and then but Wade just isn’t into structured games (that are my idea…)

Setting up an ‘invitation to play’ in our house is an invitation to walk right past it and play with the dog instead.

A sensory bucket would only evoke the sense of me swearing under my breath as I pick a thousand tiny pieces of lavender scented crap off the floor after Wade pushes it off the table and wanders off to see if there is an unattended butcher’s knife within arm’s reach on the bench.

Normally I wouldn’t care, but raising a child with developmental delay means I am an expert in Mother Guilt. The minute Wade was born, a small portion of my brain was set aside, devoted entirely to being preoccupied with ‘Therapy’. I can’t avoid it…it’s built in. The fact is, we know that kids with Down syndrome benefit enormously from regular physio, OT and speech therapy. We know that when we teach our kids things they learn and the earlier we start, the better the results. I know that with persistence, consistency and patience, Wade will develop all the skills he needs to be an independent, functioning member of society….it just takes more time.

It’s a common complaint from parents of a child with extra needs….they don’t feel as though they are getting enough therapy for their child. Either there are not enough services available or there never seems to be enough hours in the day to rush between physio appointments or speechie sessions especially if their child has extra health issues that mean doctors appointments as well. I used to send myself crazy worrying whether I was doing enough for Wade but I have come to a bit of a realisation. Continue reading

What did I expect?

I’ve kind of missed the boat recently on some of the controversies swirling around in the media relating to Down syndrome. There has been no shortage of blogger fodder for me to sink my teeth into but we have been away on holidays and I haven’t been in the right frame of mind to weigh in heavily on the issues. I tried writing bits and pieces here and there but between intermittent wifi and holiday distractions I couldn’t get going. I did read the hoopla surrounding the comments made by Richard Dawkins and managed to fire off this tweet….

IMG_1288.PNG

……but as I was trying to craft an intelligent and witty rebuttal to one of the biggest clangers a man of his intelligence could make, it dawned on me…. I was waaaay too busy having fun hanging out in New Zealand as a family, catching up with relatives, going on road trips, kayaking, sight seeing and sledding in the snow. You know….doing all the things that apparently shouldn’t be possible if we let ourselves be swayed by the opinions of people who have no idea what they are talking about. (In fact, according to Dawkins, I should have spared myself the “suffering” of this wonderful holiday and would have been much happier if I hadn’t been so “immoral” as to have given birth to Wade 2 and a half years ago. Gah!)

There have been so many things I wanted to expand on about these kinds of attitudes but the one concept I keep returning to is that of low expectations. The idea being that the biggest hurdle facing people with Down syndrome is the low expectations society has about them. Continue reading

He’s no Super Hero

There is an odd little “Frankenword” getting around the disability community blogosphere.

Inspiraporn

It’s short for Inspiration Pornography. This (mostly derogatory) term refers to the concept that, in an effort to turn the tables on negative stereotypes around disability, proud, advocating parents thrust their kids forward as being somehow other-wordly, divine or more special than the average kid because of their disability. Think: memes about our kids or “feel good” stories about people with Down syndrome doing things like getting married and so on. It’s a concept that comes from a place of love but critics claim that this stuff sells our kids short and that stories of people with Down syndrome doing things that everyone else does should not warrant a spot on the nightly news.

20140122-231852.jpg

I have umm-ed and ah-ed about weighing in on this debate for the best part of a year.
Partly because I’m not great at drawing a line in the sand on any issue. I am always ready to throw out a working hypothesis in the face of new evidence to the contrary.
Partly because I do not like holding up another writer/parent’s opinion or work and encouraging others to pick holes in it and publicly berating them for their approach.
But mostly because I am certain that any stance I take will probably be proven to be totally hypocritical in more than one of my future or past posts! Lets face it, I’m sure there are several critics out there who would consider my entire blog to be Inspiraporn.
As a result, I have always opted for the vague, non-committal approach to controversial topics. I find it really hard to have a definite opinion on any issue. I can always see the pros and cons to both sides and I don’t like having to pick sides!! I always reserve the right to pick a little from column A and a little from column B.

However I can’t really let this one go through to the keeper….. Continue reading

Step 1: Give a Sh*t

I’ve been thinking a lot recently about what it is to have a disability versus what it is to be “normal”. I guess I started to think along these lines after reading this article, by Mark Leach outlining the latest claims from the biotechnology industry to detect any deviation from “normal” in embryos in prenatal testing. I read this and thought…what template of “normal” are they going to use here? There are potentially billions and trillions of combinations in our genetic code…which one will they pick? How earth shatteringly bland is that cookie-cutter person going to be?

By society’s standards, I am “normal”. I am, however, different to you. I look different, I sound different. I had different parents and a different upbringing. I grew up in a different town, went to a different school, listened to different music, had different friends. My friends and family and past boyfriends are different, my husband is different. My hobbies are different, my interests, my dog, my house, my taste in furniture, my favourite ice cream flavour…..

My genes.

Continue reading

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… Continue reading

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. Continue reading

The Cynic V The Anxious Wreck: a war story

From the day Wade was born, I have been waging an internal war about how to manage the competing feelings of wanting to do the best for him, yet not wanting to get sucked in to the heaving pile of guilt-laden extra “stuff” that society makes you feel utterly compelled to do for your child, whether they need it or not.

In the past, I have struggled with anxiety. Snowballing worries and being paralysed by indecision usually topped the list of how it manifested. The great paradoxical irony being that, before I met Mick and had Wade, the consequences of bad decisions were fairly minimal but the anxiety levels were pretty high. There was only me to worry about yet I found it extremely hard to move forward when there was no clear path or there were too many pros and cons to manage. Now, even though there is much more at stake, I find it much easier to manage the anxiety and make clear decisions. The turning point for me came well before Wade though, at the police academy, where I learned that when faced with an unfamiliar situation, you have to make a decision and do SOMETHING. Walking away is not an option because when you are standing there in the blue uniform, everyone is looking to you to fix the problem and even though you might not know the absolute best course of action to take, you have to back yourself and pick one.

It was the greatest lesson I ever learned. Continue reading

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. Continue reading

Nutty new mum

Wade was (still is, although there is some stubbornness creeping in) a dream baby. My idea of having a newborn in the house was, scream, scream, poo, scream, finally asleep, shh, shh, creep around, don’t wake the….dammit, scream, more poo, dried spew in your hair and maybe a smile every now and then.

Wade hardly ever cried. He settled quickly into the feed, play sleep routine. When he fell asleep, nothing really woke him. He usually slept for an hour on the dot and woke up smiling. In fact he smiled most of the time and only pooed once a week for the first 5 months of his life. I think this is actually due to the low muscle tone meaning that everything took longer to work its way through but I was counting it as a win. Other mothers would groan as I complained about how he was getting a bit grumpy as poo day was coming up, when they had just cleaned the third poo for the day off the walls, the floor, the car seat, change table or whatever else was nearby.

And he was this cute too….

20130408-231733.jpg

20130408-231958.jpg

Continue reading