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?

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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.
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I’m not going to force him to be nice to peopleā€¦.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

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”
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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.

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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. 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

Childcare: or Giving with one hand and taking with another

A little while ago, Wade’s physio suggested that he might benefit from a day a week at childcare. The idea being he would get a bit of extra stimulation and spend some more intensive time with other kids. It would also give me a day to myself and he might get used to being away from me for more than an hour or two. Seemed like a great idea! She would come with me to help me pick a place which was great. I hadn’t considered childcare previously so I’d spent no time researching it. I had no idea what to look for in a centre.

We dropped in to a local centre to get the ball rolling but it was awful. My mind was swimming with all the horror stories I’d heard from other local mums about having to look at 20 or so childcare centres to find anything half decent. I compiled a list of nearby places and did a bit of ringing around. I didn’t know how inclusive your average childcare centre is so I put on my advocacy hat and got ready to leap to the defence of my boy, only to find that most places were completely unfazed by the prospect of caring for a child with Down syndrome which was reassuring, except for one….

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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