What’s worked for my son with Down syndrome…road safety.

Sometimes when you start out teaching your kids how to do things, you have no idea whether your approach will work or not. That worry can be amplified when your kid has developmental delay as the fruits of your labour can take a long time to ripen. Trying to balance sticking to a method to provide consistency and ditching something that doesn’t work before I have wasted too much time on it used to drive me crazy but as time passes, I am getting better at knowing what works for us and what doesn’t.
So, I thought I would write a little bit about things that have worked for us and why.

I thought I would start with road safety because this was one of the biggest fears I had early on. Like most parents starting this journey I’ve had so many people delight in giving me all the horror stories of uncontrollable kids or near death experiences as their kids belt out into oncoming traffic. This terrified me. What if I was never able to teach him to be safe near a road? What if he wrestled out of my grip suddenly one day and threw himself under a truck?

I decided early on that I would try to teach him some road sense in the hope that he would learn to walk with me safely and listen to my instructions…and I decided to start from the moment he could walk. Partly because the earlier I started the better, but also because he would be pretty slow and I could catch him easily if I had to!

So here is a list of things I did that have actually worked.

How do children learn about difference?

I want to tell you a funny story about what happens when two kids who are incredibly advanced for their age interact with a kid who is developmentally delayed. I want to tell you this story because,

A) it was absolutely hilarious.
B) it’s a story of what happens when competition, ego and status don’t influence relationships.

First a little bit of background.

My sister and I are an interesting pair. Basically we are the same person but we couldn’t be more different. What I mean is, at our core, we hold the same values, same ethics and same outlook on life but we have always been a bit opposite in how we ended up there.

Growing up we fought like cat and dog. Only 18 months apart in age I was never quite older enough to assert full dominance of my superior age all over her and we were fiercely competitive in every mundane aspect of our lives. Who got to sit in front seat of the car, who got to push the trolley, who did our parents love more….(yes, I actually asked them that once)

I was the one who found school work easy and didn’t have to try too hard to get good marks whereas Sammy found it more difficult. Yet, she was the one who had a million friends by lunchtime and I was still working out how to keep the two or three I’d had for years.

She was short, blonde haired, blue-eyed and adorable and I was tall, lanky, and well….I guess my neighbour summed it up when she said to us...”Sammy will always be pretty, but one day, you will be beautiful”.

Thanks…
I think?

(I spent many years wondering if that “one day” had arrived yet!)

We didn’t become friends until I moved out of home. As we moved into our separate lives as adults, married and became parents, we became incredibly close. Basically…we grew up…and now we understand who the other one is. I don’t talk to anyone like I talk to Sammy, both in a good way and a bad way! We still drive each other batshit crazy in the way we do things but deep down there is respect and an unbreakable bond.

She often gets the faltering voice on the end of the line saying “Have you got a minute to talk?” And I also answer the phone to hear “I just need to vent!” She is the one who tells me to get a grip when I’m losing rational thought and acting like a crazy person and I am the one who tells her that yes…on this particular occasion, I think you were wrong and you might need to suck it up.

I’m not going to force him to be nice to people….and there’s a reason for that.

(A big thanks to Nykie of Mistral Photography for these beautiful photos of Wade!)

Recently Wade’s communication has been really taking off, and with it has come a new sense of independence and knowledge about what he likes and doesn’t like. He is more opinionated and his sense of humour is really coming alive! Now that there is a bit of to and fro to our conversations, it’s like he has more ownership in a conversation which is beautiful to watch.

We had a wonderful exchange this morning after he turned on the telly with the remote. It came on to a kids channel showing “Play School”. Wade loves pushing buttons so even though he is watching the show he likes or listening to a song he loves, he will still push buttons to turn it off or change the channel. He played with the remote and the channel changed so he came over to me, handed me the remote, pointed to the telly and said, “School”.
“You want me to put Play School back on?”
“Yeah”

This sounds like nothing but these kinds of exchanges are so remarkable when you think about it. A few months ago, he was just starting to speak, now he is not just copying what I say to him, he is using his words to initiate a conversation and get across how he feels about something. He has gone from the odd word here and there to hundreds of words, relentless attempts to copy full sentences, speaking in two and three word sentences and being so much clearer that people other than his nearest and dearest can actually understand what he is saying (or at least trying to say).

Photo by Nykie Grove-Eades of Mistral Photography

One “fun” aspect of his slowly developing language is the realisation that all those swear words I drop carelessly a into conversation have been softly landing in his memory bank. I discovered this through a recent bout of road rage as I heard coming from the back seat “Ah…SHT”. Now, this is a remarkable achievement for him and I should be celebrating because after three years of teaching him the word “Sheep”, we are no closer to him saying it. I have shown him flash cards, innumerable repeats of “Where is the Green Sheep”, soft toys, songs…all sheep related, all with me repeating the word “sheep” over and over but every time I say “What’s this?” I am told “Baaaaa”

The first light of speech

I’m trying something new with this post. Click the links to see some videos posted on the Facebook page that go with this story

Watching Wade develop is a bit like watching the sun rise. If I sit and watch the sky, I can’t really tell if its getting lighter. Minutes tick by and the world seems pretty much as it was and then all of a sudden I can see it. The sky is different. It’s changing even though I’ve been here the whole time.

Something has shifted in him recently. His speech is starting to take shape and his ability to communicate is coming along. It’s been a long time coming and it has made me doubt myself on more than one occasion. Sometimes it feels as though months have gone by without anything new happening and then all of a sudden I catch myself and say… “When did he start doing that?”

I’d love to know what it is that spurs him on to the next stage. I have a theory about him only being able to work on one thing at a time. (The jury is still out on whether this is a Down syndrome thing or a male thing!). But once he masters one new thing, he very quickly learns two or three more.

I shouldn’t be so impatient but as I start to see the gradual changes that are inching him closer to full language, I am getting excited about the conversations we might have. Earlier today I tried to put him down for a nap but he obviously had something on his mind.

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.

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….

……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.

Behave…everyone is looking at you.

I was in the supermarket the other day and I saw a woman up ahead with a child in the trolley. The child was about 2yo and was crying.

“Look around…” the mother said, “… you’re the only one crying here…”

I am not judging this woman. I understand that there is often A LOT going on in the lives of others that bubbles up to the surface and comes out as frustration when someone is at the end of their tether….

….it’s just that I hear this kind of thing a lot.

It takes many shapes and forms;

“Behave!, everyone is looking at you”
“Don’t do that, you’re embarrassing me”
“Don’t wear that, it will make you look fat/skinny/daggy/whatever….”
“None of the other kids are being as naughty as you”

It always gets me thinking…. People are often terrified of what complete strangers think of them. It is so common for parents feel embarrassed by their kid’s behaviour in public or use the spectre of public humiliation to encourage better behaviour from their kids. Whenever I hear something like this, I find myself asking the question….

When the wheels fall off…in public…

I met a group of mums not too long ago who all have kids a bit older than Wade. As we were talking, a few mentioned how the feelings of grief that some have after diagnosis can reappear at different times, usually around transition times as our kids move from one stage of development to another, like starting school. On an intellectual level, I felt strange about this. In my mind, I have already dealt with the feelings I had around the time of diagnosis. I know that my fears were mostly misplaced and I am so truly in love with who Wade is. I don’t feel like I have lost anything by having Wade. But the more I thought about it, the more I realised this is exactly what has been happening to me over the past few months.

As Wade is getting older, the developmental gap between him and his peers is getting larger. My logical brain tells me that this is ok. I know he doesn’t need fixing or to be made “normal”. I know his value is the same as everyone else regardless of his achievements but as a parent, the universal feeling of not doing enough is a monkey on my back.

I want full inclusion for Wade. I see it as an important goal and one that is not only possible but worth fighting for. The problem is…as Wade is getting older and becoming more of his own person with his own strengths and weaknesses, I am starting to ask myself whether my desire for him to be included in any and every facet of life, is more about me than about him. Trying to balance the concept of “the more I put into Wade’s development the better off he will be” versus “the more I embrace and nurture him for who he is the better off he will be” has been driving me crazy.

A Butcher’s Paper Review

Drawing from the full palette of colours this piece is a real paradox. Constrained, yet at the same time uninhibited, the piece speaks of the inner contradiction in us all. The striking use of colour is juxtaposed against the dark inner core that draws the eye symbolically to the edge of the canvas. Limiting the art to the edge of the canvas Wade gives us the experience of what is…and what could be….

Each streak of bold hue is intertwined with the next in a haunting representation of the diversity of the human race and the common experience that binds us. The core of the image leaves the viewer asking themselves whether the diversity of colour is exploding forth, drawing inward or doing both at the same time…shifting the paradigm.

Bursting onto the scene seemingly overnight this young artist is one to watch.

Untitled (2014)
Texta on butcher’s paper.

A Shameless List of Adorable Things

Sometimes I get to the end of the day and realise the day has been full of tiny moments when my heart has nearly stopped at how adorable Wade is. Moments when I have to try and remember if I ever really knew how to feel anything before he came along. Moments when I stop and think….we made him. He wasn’t here before and now he is. Moments I’m sure every parent feels when they watch their child develop personality traits uniquely their own. Traits that we didn’t teach him, they just came from within him. So this is a shameless, self-indulgent, cheesy, gooey list of things that make me go squee about Wade….just because.

1. The Public Squirm Test
Going out in public with Wade is something that I have to allow extra time for. Mostly because I am stopped several times a day to discuss at length the deep level of cuteness this kid emanates but often it is because Wade will make a beeline for someone and single them out as “The Greatest Living Person on the Planet…for Now”. Wearing a hat or glasses will increase your chances but often he just spots someone that he decides is awesome and will go and meet them. Buskers need a strong sense of self too as Wade will walk right up to them and stand at their feet, staring up into their eyes as they perform. I get such a kick out of watching said person work out what to do or say when they look down and notice Wade peering up at them. I’ve written before about the peace that surrounds him. He is comfortable in his own skin. He is neither shy nor confident…he just is. He will just stand there and absorb them. A lot of people have no idea what to with that. After the obligatory, “Hey there little guy, aren’t you cute” there is usually a wordless conversation of smiles and waves before it starts to get weird for the poor person. I like to leave it just that little bit too long before I head over to give them back their personal space! Adorable.