Out Of Sync?

I’ve had an emotional few weeks. And before you start feeling sorry for me. Please don’t. You see, my emotionalness (I know that’s not actually a word) is bordering on dramatic. I’m guessing it has a little to do with Oscar and some of the added worries we have along the way with him but perhaps more so, it’s EVERYTHING to do with me being 28 weeks pregnant! You will read the below and probably think, “What’s her problem? It’s really not that big a deal”, but when you’re pregnant, and I don’t think I’m the first to feel like this, you kinda turn a little loopy at times. When you get verification from your husband, who bares the brunt of said loopiness (he’s had to put up with these slightly crazy ways three times over now) AND your sister, who tells you that “you’re usually a lot stronger than this”… It tells you that perhaps you may be slightly overreacting occasionally

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Aside from the fact that Oscars STILL going through his biting stage (yeah he stopped for about 5 weeks… lured me into a false sense of security…but then started again <sigh>) and that causing me a lot of stress, my wobbles started when I was advised, (and this was some advice I greatly appreciated, I might add) that I read a book called “Out of Sync Child” as it may help me “understand” Oscar.

I’ll start at the beginning – The other week, Oscar, Alfie and I went on a trip to the supermarket, all in good spirits. I put Oscar and Alfie in the trolley and I set foot inside the supermarket, but from the moment I did, Oscar cried. When I say cried, I don’t mean uncontrollably, it was more a moan of sorts. When he’s upset he puts his finger in his mouth and chews down on it. It’s something he’s done since he was a baby and people often comment that he’s teething when actually, he does it when he’s upset or unsettled.

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Presuming it was bit of a protest at being cooped up in the trolley and not wanting to pander to him, I carried on with the job in hand. Knowing Oscar as I do, I thought he’d stop the waterworks soon enough. He’s usually such a happy little boy (there’s that annoying cliche that every parent of a child with DS hates) but in Oscar’s case for the most part, he really is! I was sure he’d stop… but he didn’t. I tried everything. A drink, a snack, letting him play with my phone (I was desperate), singing, dancing down the aisles (me not him obvs), you name it; I tried it but he was having none of it. After a long and stressful supermarket shop (I’m pretty sure this convinced me to do my grocery shopping online from now on), we left the shop… only for him to stop his moaning/protesting the second we exited the building. I expected him to be unwell later that day or miserable, but he wasn’t. He was as happy as Larry. I put this to the back of my mind… for a while at least.

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The next day we had Consultation Day at our local support group with some of Oscar’s therapists. I’ve talked of this group before but for those of you that don’t know, every Friday we meet with Oscar’s peers, all of whom have DS and the children go from room to room, doing their different therapies. There’s OT, Speech Therapy and Early Years Teaching and of course in-between, the parents get to chat, while the children play. On the first week back every term, the therapists talk to the parents about their child’s progress, areas of concern and what’s next for them.

It was when I went in to see his Speech Therapist that things started to become a little clearer. We agreed Oscar had made great progress, that we should continue working the way we had been and although his concentration wasn’t the best, it had absolutely improved. I felt happy that she had been so positive. She is an amazing therapist and we’re so lucky to have her. But I had had one thing on my mind, that I had wanted to address. When Oscar’s concentration wavers, she will often give him a chewy or buzzy which he immediately brings to his mouth, to either start chewing down on, or to feel the vibrations of the buzzy, through the mouth. I knew that for whatever reason it worked and that invariably, the distraction was all he needed to continue with the session but in my naivety, I asked why.

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She started to explain that Oscar is a “Sensory Seeker”. She was explaining like I already knew this. And although everything she was saying about him I had agreed with, I didn’t realise there was an actual label for it or indeed an explanation. She said that Sensory Seekers simply can’t get enough of anything, literally. And that anyone who suffers from the disorder (ouch, I hate that word) are constantly in search of ways to arouse their nervous system. She likened it to someone like you or me. She said some people feel the need to incessantly tap their foot. It could be a comfort thing or a concentration thing, but that you or I understand that foot tapping is what that person needs to do to remain calm and grounded, whereas someone like Oscar might be feeling a bit odd, but can’t work out what he needs to satisfy that.

She also explained that Sensory Seeking is a subtype of Sensory Processing Disorder and that there are many different types of SPD. He could have had the reverse, in that he shies away from sounds, touch, smells, tastes, but instead he seeks them out.

When I told her about the supermarket, she said it could have been any number of things bothering him, from the lights, the temperature, the background noise, things that perhaps weren’t noticeable to me because I have learnt how to deal with those changes in environment.

So here’s where the book came in. She advised me to take a look at a book that was recommended for Sensory Seekers. It was called “Out of Sync Child”, and as I said, all the while being so grateful that she was helping me understand, I couldn’t help feeling wobbly that I needed to read a book with that title. I mean, could it sound any more… depressing?

Whilst waiting for my amazon order to arrive, I took to google.

I have advised people on here not to Google stuff. It’s the devil. If you have a headache, you think it’s a tumour. If you have a child that doesn’t sleep, there are literally 10 million reasons to help them (and no quick fix solution on which one is the best for you) and if you have a child with DS and you Google it… well, it can be the bleakest, most depressing thing in the world, according to some of the search results. Every once in a while though, Google is your friend. And in this, reading up on sensory seeking, Google helped me see things a lot more clearly.

It was literally like reading a blow by blow account on Oscar. I won’t list all of them. There are a lot. But these in particular jumped out at me from the screen:

1.Loves loud noises, often watches tv and listens to music very loudly (This IS Oscar. He loves anything with the volume turned up or any toy that makes noises. He loves the traffic lights when they beep and an ambulance whizzing by with the sirens blaring… Claps his hands, shouts and just generally gets excited at all of the above)

2.May frequently make noises just to hear them (When we went round to a friend’s house recently, they had a fire guard, that when you shook it, it made a lovely loud noise. This was a great source of amusement for Oscar and even though I repeatedly took him away from the guard, he was drawn to it all afternoon)

3.Will put anything in their mouth in search of oral input, such as chewing or crunching sensations (He loves crisps for this reason I’m sure… and his latest, pomegranate seeds, I’m sure because they crunch in his mouth)

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4.May love or crave bright lights (Always has done)

5.May love to spin in circles (He does this, not all the time but when he spins, he’ll often do it a few times as he clearly loves the sensation of dizziness)

6.Fidgets, has difficulty sitting still at times and takes bold risks (Oscar to a T)

7.May frequently jump from high heights (Ummmmm this is definitely him. He has no sense of fear but will often repeatedly jump from the arm of the sofa, rolling into the chair, then roll to the floor, like some kind of stuntman… rest assured we do TRY to stop this behaviour… It’s an ongoing battle)

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8.May repeat certain movements almost endlessly just for the sensation (See above <sigh>)

9.Frequently overstuff their mouth when eating (He has done this from a young age, although he’s much better now. When I sign “wait” for example, he’ll make sure he does just that before he stuffs the next grape in his mouth)… Or Mcdonalds chip

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10.Problems sleeping (Although not awful, and I mustn’t complain because I know it could be a lot worse, he can have periods of time, where he’ll be wakeful throughout the night)

11.Frequently attempts to engage in rough play, such as wrestling (Tick… although so does Alfie, Daddy and Grumps- Oscar’s grandad- so you can’t really blame him)

12.High levels of energy (HE.DOES.NOT.STOP.MOVING… ALL.DAY)

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I remember a while back I posted a picture on my page of Oscar holding a toy that sung a little tune. He was holding it to his mouth and the picture received a lot of comments from other parents saying that their children do, or had done something similar to this in the past. We concluded between us that it was probably down to the vibrations he could feel through the toy… and so using a buzzy in his therapy sessions or a chewy to help calm him a little, now makes perfect sense.

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And so my point here? I know on the grand scheme of things this isn’t a major deal. It’s just something that Oscar and I are going to have to try and manage and understand. His speech therapist told me she knew a little boy, who didn’t have DS but had another form of learning difficulty, and that from the age of 5, had hated P.E at school. It wasn’t until he was 9 that he could articulate to her, that it wasn’t because he hated P.E itself, it was that he didn’t like the way his feet felt in his plimsolls. I guess this just made me feel sad. Would Oscar be like this? Would he not be able to find the words to tell me what was bothering him in the future? Frustrations in communication come hand in hand with having a not quite 3 year old, but as he gets older and may not be able to let me know what’s troubling him, there lies the problem and all of which can contribute to behavioural problems.

I figure all I can do is watch and learn. What are his triggers? Why is he acting the way he is and is he just being a typical little boy, or like in the supermarket, is there something upsetting his balance? I have read that there are treatments to explore, for example, putting him on a sensory diet or doing therapeutic listening, so in time I will take a look. I will say that finally understanding some of the differences we had noticed in him, has been a huge blessing and relief. The whole thing is fascinating and perhaps my slightly dramatic hormonal state at the moment is kinda adding to my anxiety about it.

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As a parent, I can spend hours on end worrying about my child – The truth of the matter is, he’s Oscar, regardless of any label or diagnosis he’s given. He’s our little boy, who is loved more than ever and will continue to do brilliantly because simply, that is what he does by just by being him.

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1 comment

  1. Amanda   •  

    Hi. Congratulations on your growing baby! Have only just found your Blog, so I am newbie! How you describe Oscar, is very much similar to my daughter’s behaviours, quirks and sometimes scary performances such as the no-fear jumping from heights. I had some suspicions that she may be on the autistic spectrum, but have always known she has sensory issues, so still not convinced about the former. However, that has not stemmed my anxiety and profusion of new grey hairs! I think my daughter is beautiful both inside and out, regardless of DS, operation scars or any other “diagnosis”. She is the only human being that can make me smile, laugh and cry in the space of an hour and there is no one else like her and I love her for that. Thank you for your congruent writing.

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