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.
Life is therapy too.
I get myself into such a tangle over terms like ‘sensory play ideas’ or ‘problem solving opportunities’. I see pages and pages of specially designed games, products and activities that are supposed to tick each of these boxes….and they probably do. The problem I have, is that it feels as though everything is formalised and labelled now. I think I had forgotten that ‘fine motor training’ can happen anywhere, it doesn’t need specific equipment or a formal activity to achieve it.
Recently I seriously considered buying a giant ball/foam pit because apparently it’s good for his ‘inner core strength’ and ‘gross motor skill development’. Then we were at a friend’s house and I saw him get stuck in their bean bag. He twisted and turned, doing 15 types of ab-crunches trying to get out of this thing until he managed to roll over, get his foot tangled and had to work out how to free himself.
So we got him a bean bag instead…and he loves it. He gets stuck all the time but he also likes to run and jump into it, push mummy and daddy’s head into it, watch telly in it, drag it around the house or try to pick it up and throw it on top of us. Much more bang for much fewer bucks that’s for sure.
I’ve written about this before and looking back over it now, 18 months on, my opinion is still the same but with more knowledge under my belt, I can make every day activities more therapeutic now. I still think the formal therapy is important, and all of those activities and are all useful, but for me, it’s all about balance. To be clear, this post is not about what everyone else should do, it’s about what we do. Each parent will need different things and will work out what works best for their child but we have decided that this works best for us. It may be useful to others it may not…..
Wade has an Early Intervention team that is allocated to him. Our key worker is an OT and comes every fortnight or so. We touch base about what Wade is up to and where he is headed. She will schedule meetings with a speech therapist or physio if I need to focus on a particular part of his development and I will bounce ideas off them or get an overview of the stages ‘typical’ development moves through. They also go to his childcare and help the educators with the best way to keep Wade included, by showing how and when to use his signs and to be mindful of when he needs a bit more encouragement to try new things. I also use some Better Start funding every couple of months or so to check in with other therapists to get another point of view or some fresh ideas about reaching the next milestone we are working on. That’s all the formal therapy I do which adds up to about 2-3 hours a month. It sounds like nothing but I use it to educate me to be Wade’s therapist, not to give therapy to Wade. I get 2-3 hours training a month to give Wade therapy every day, plus whatever else I find online that might be useful.
I don’t want to spend my days racing back and forwards between appointments. I have better things to do than spend my time waiting in waiting rooms if I don’t need to…and I have decided that I don’t need to.
By being mindful of how physiotherapy and occupational therapy principles work, or how speech and language develops, I incorporate that into our everyday life. There is so much scope for learning in the world around us and by freeing up my week, that means there is also room for fun and spontaneity.
For example, I could either stick Wade in a corner with some toy cars while I quickly try to hang out the washing before we rush to a structured OT appointment….
….or I could skip the appointment all together and get Wade to ‘help’ me with the washing instead.
Yes, it takes three times as long but it can be fun too.
It started when Wade was young, with me announcing in a silly voice “IN” as I threw each item off the drying rack into the basket. I would hand them to him and eventually he started to copy me. (Admittedly, I have to let go of the fact that my perfectly clean laundry spends a lot of time on my less than clean floor but I don’t really mind).
Then he might try to get the clothes off the rack himself and throw them in the basket. Sometimes he can’t do it and he has to find another way to hold it. Sometimes he tries to remove a sock by holding both ends and pulls on it. It doesn’t work so he tries again and again. I take his hand and show him to hold one end of the sock and pull so that it slides off. It sounds like nothing but this simple action is fine motor skill training, problem solving and life skill training all in one activity.
It’s also called doing the washing.
The trips to the physio taught me that repeated activity of squatting down and up is good for his inner core strength. I could spend half an afternoon trying to force him into this exercise or I could notice that he does that every time he hands me an item from the basket.
My speech therapist taught me that I should speak in sentences that are just one level above where he is speaking. Being mindful of this means I can modify how I speak to him when we do things like this. “IN basket” is more effective than saying “Wade darling, be a good boy and put this sock in the basket for mummy ok?”
Labelling everything as it goes into the basket has been really helping his language too.
Big sock…little sock
Red T-shirt….white T-shirt.
Lately I have been learning a bit of cued articulation and I can throw some of that in as we do the washing too. Wade can say the word ‘sock’ but it comes out as ‘ock. It’s quick and easy for me to do the articulation for ‘S’ while we are looking at the sock and practise saying it over and over.
Sometimes I will lay out all of his socks and we try to find pairs.
Sometimes I get him to ‘help’ me hang out the wet washing too where he has a go at hanging things on the rack himself, which is adorable and completely ineffective…. but he’s getting the idea.
He learns that the wet ones are hung out to dry and the dry ones are taken off to go away. He helps with putting the washing in the machine as well.
This is the building blocks for life skills too. The plan is that by getting him to help me with the washing, he will learn to wash, hang out and fold all of his own clothes when he is older, especially if he has been doing it since he was 2 years old.
This ‘activity’ is completely unstructured and it doesn’t always go this way.
Sometimes the clothes never end up in the basket…
Sometimes the basket is a car…or a hat….
Sometimes he will sit surrounded by recently clean clothes and try to wear all of them at the same time.
I don’t really care because in the middle of all of that, he is learning. I’m not going to count how many repetitions of core strength building he has ticked off in the last hour or how many word approximations he has attempted, I just know that they’re in there somewhere.
It took a loooooong time before I knew whether he was getting it but as time has gone on I can see that he does. I had to let of go of whether he understood me or not and carry on presuming that he did. He doesn’t have to get it right and it doesn’t always have to go the way I planned. Some days I get a resounding “No” if I ask him to help and I let it go. I know that there will be opportunities to do something similar at other times of the day, like making toast or getting dressed or getting in to the car.
- Matching lids on textas, lids on and off.
- Counting stairs as we climb them
- Black car, red car, silver car as we walk through the car park
- Holding and feeling packets of things at the supermarket….soft, hard, crinkly, fragile. (May need to pay for more cartons of eggs than you planned if you let this get out of hand…!)
….all therapy…all useful…always around us.
By learning the principles, then locking them away for use when the opportunity comes up, I have learnt to be more spontaneous. If I plan a strict schedule of ‘therapy’ for Wade, there’s no time left in the day for him to surprise me with a quick game of Push Mummy’s Face into the Bean Bag Because it is Hilarious. He also gets to show me how he sees the world. I never really taught him the correct sign for ‘music’, for example, so he taught himself one. When we dance to music we click our fingers to the beat to teach him rythmn. He now associates that with music so when he wants me to put on some music he comes up to me and throws his hands out to the side and makes a clicking sound with his mouth. It’s very cute…and he figured it out all on his own.
This is probably what every parent has done since the dawn of time with their kids but in an effort to keep the raging Mummy Guilt at bay, it is good to remember that just because I’ll never see it on Pinterest doesn’t mean it’s not good for his development. I also don’t want to structure how he learns too much because I want to encourage him to be who he is, not who he thinks I want him to be.
I’m not going to stop my life for therapy….I’m going to make my life more therapeutic instead.