So here is is for all of you who haven’t been able to see the original article. I did e-mail the editor and ask for permission to publish this over a week ago, and I have heard nothing so I am hoping that its ok to do this…
If you want to see the article in context you need to visit SI Network and pay the £15 membership fee, its not much and if you are interested in learning more about the therapy we use to help Charlie and how you could use it too I would urge you to join.
Charlie is an early riser and morning person, normally up and wide awake by 6am. Sometimes he has made it through the night in his own bed but mostly he has joined us in our bed at some point. Charlie loves to snuggle, he finds something calming in being under a heavy duvet squished between his parents. “Where -illy?” Charlie asks looking for his beloved playmate and older sister Lillie, but she is still sleeping, and is not such a morning person so we leave her in bed for a little longer. We start the day with Charlie’s tactile input. He knows the routine we have done for the last 9 months and happily joins in. “Which arm?” I ask and he willingly extends the right one and laughs. In the quiet of the mornings, he is happy and relaxed. Charlie loves breakfast. For the last 3 years, he has lived on a very limited diet of Cheerios and milk, toast and butter and certain brands of fruit juice, but today he wants cream crackers and butter. It’s a variation on a theme but still well within his comfort zone. He drinks his fruit juice through a straw, another small adaptation which has become part of our routine, and in my pre-coffee haze, I’m not really thinking about why it helps him, but I know it does. We sit together at the table, I drink my coffee and he munches away happily on the same kind of bland beige foods he has eaten for every meal of every day for the last 3 years. It doesn’t bother him as much as it bothers me, but I try my best not to let him know.
After breakfast if I am awake enough, we do some therapy exercises, commando crawling on our tummies, throwing and catching on our knees- or if it’s dry outside, we might bounce on the trampoline together and pretend to be power rangers. Sensory integration is fun but I’m sure my neighbours must wonder if I am crazy. Charlie wants to play on the Wii or watch TV but he knows that we have a rule that kids are not allowed screens until they are both dressed and fed, ready for school, so he goes to fetch his sister. Charlie wears his uniform-it’s a soft polo shirt and we found some second hand well washed school trousers; he still needs some help to get it on but is beginning to attempt to dress independently. We leave his socks and shoes until the last minute before we leave the door, even with his socks on inside out he still finds it uncomfortable, so we try to minimise the time he has to wear them. Lillie dresses independently and wants something different for breakfast again; she is as wildly adventurous with her eating as he is limited. We settle on yet another new kind of breakfast cereal. Lillie helps her dad make the lunches, in stark contrast to Charlie she loves variety of flavour and colour, spicy pepperoni is a special treat for her, and she adds some cherry tomatoes and cucumber slices to her box. Charlie’s box consists of only the foods he is comfortable with: more Cheerios, dry biscuits, more crackers, a bag of transformer snacks – currently the only crisp like snack he will tolerate, and a juice box with a straw. The same lunch every day. I’m glad that the school are understanding, and don’t insist on only “healthy” foods. When your child won’t eat in a typical way, it is easy to feel judged by others – even those who mean to be helpful. We brush Lillie’s hair and tie it back in a ponytail. I look at Charlie’s hair and kind of wish I could fix it, but there is no chance. When I reach over to move a particularly unruly piece of hair that is sticking out. I am quickly reminded of the rules as he shouts in a voice which is suddenly anxious: “Noooo!! no touching my hair mummy, you hurting Charlie” I apologise and wonder if any of the other parents or teachers will notice that we never brush or wash his hair, or if they notice the slightly wonky hairstyle which is caused by my new found skill of night time haircuts while he sleeps.
While the kids get their screen time, I get my 10 minutes to run upstairs grab a quick wash and change into my work clothes. By the time I get down my husband has already repeated Charlie’s tactile routine, got the kids into their coats and shoes and we are ready to start loading them into the car. Charlie is ready with his coat hood up and a little umbrella in his hand just in case it suddenly starts raining on the 10 metre walk to the car. We do live in the north of England so this is a possibility! His ear defenders, spare clothes and therapy brush are packed into his school bag. We don’t hesitate or stop during the transition pausing or changing the plan now would cause Charlie to feel more distressed. Loading and unloading the car used to be a major battleground for our family, and would regularly result in one or more of us having a meltdown, and yes sometimes I would join in with the crying too.
I had no idea that wind, rain, socks, a passing truck, or a combination of all 4 could cause so much stress and chaos. I can hardly believe how much progress we have made in the last year. I clearly remember what life was like the days before I had ever heard the words sensory integration, back when I thought that an OT was someone who helped old people to walk or live at home again after a hip replacement. I remember the screaming and the fussing, and I appreciate every little victory we have in ways that typical families may never understand. We are blessed that Charlie has a place in a school which understand his needs, the teachers are ready with toast and butter for the days when breakfast hasn’t been so successful. They incorporate lots of soft play, messy play and even swimming into his school day, and they remember that socks must always be on inside out. He has only been given only one year in this school while he is assessed and we had to fight to get it. We are not sure where he will go next year or if at some point in the future he will be able to manage in the same school as his sister.
My work day is shortened to fit into school hours and I eat my lunch at my desk or in a meeting, so that I can leave earlier than my colleagues to be able to get the kids out of school. I am lucky that my manager is flexible and understanding, I love my job. I work with very needy people, during a time of crisis in their lives, but it is draining and by the time I get the kids out of their separate schools and we get home I am starting to feel it. Lillie chats happily about all her friends and their plans, she complains about doing her homework and the unfairness of spelling tests, as much as I agree with her I can’t let her know. I try to extract some information from Charlie, but apparently all he did all day was “run with Callum.” I dig his link book out of his bag and I am grateful that the teachers take the time to include some more meaningful information about his day in there, I read about what he has eaten, the activities he engaged with and how his pre- reading skills are developing. Once home I chase the kids away from the many screens that they are so attracted to. We encourage our kids to do things in our house that other people might find a bit too permissive – jumping on the sofas, riding the scooter indoors, swinging in the loft, attempting to do a headstand or jumping between beds are all good activities, but they still love the screens and it’s hard to find the right balance. For dinner my wonderful husband has made Spaghetti Bolognese he is gifted in the kitchen and we love our food, we cook from scratch and include lots of international flavours in our menu. Plain spaghetti along with plain white rice are both recent additions to Charlie’s short list of beige foods which he will eat, but tonight he is not interested in joining us, he asks for transformer snacks, we say no. So he wanders off to play with Lego.
We have learnt not to react; sometimes he will sit at the table; sometimes it is just too much for him, and I know he will probably eat later when it’s quieter and darker and after he has had some deep pressure or proprioceptive input. Our new vocabulary is almost as impressive as the change in our perception of the situation.
After dinner, things look pretty much like I imagine they would in any household with two primary school aged children. The tactile routine continues alongside homework and computers, play-doh and a squabble over which TV channel to watch or some toy that has suddenly become very popular again.
Bath time is Charlie’s favourite; the kids are still young enough to bathe together which is fun. He likes the bath deep and fairly cool. We have taught him to wear goggles and swim under the water face first, that way at least his hair gets wet. On the days that won’t work we let them splash the water as much as possible to get him used to it. Suddenly the deep bath water works it’s magic and he decides he wants to eat the spaghetti. Is it ok to eat spaghetti in the bath? I have no idea, maybe one day when I have time I will call one of my lovely OTs and ask them, but until then I’m just glad that something is going into his stomach. When the spaghetti is finished we let the kids play with shaving foam. Charlie likes the idea of shaving foam, but up to now only in the bath where his body is relaxed and he can wash it quickly off his hands when it becomes too much.
Finally, bedtime comes. We read a story, brush teeth (another small victory) and Charlie snuggles up in his sister’s bed. She has a memory foam mattress which she inherited from us, and Charlie brings his weighted blanket which my very talented mum made for Him. We allow the kids to watch a short Disney film on the old VHS player in their room. We say goodnight and give lots of hugs and kisses. I don’t often make plans for the evening. It’s not that I can’t leave the kids with a sitter- they are really very well behaved for other people and we have some wonderful trustworthy friends but I am so very tired by the time that they are in bed. My bed looks so inviting by 8pm that I just give into temptation and get into it. I wonder about the spaghetti in the bath thing but I’m too tired to call anyone, so the question can wait for another day.