In one ear, out the other

If I’m honest and I’ve always vowed I would be on here, one of my biggest worries for Oscar is Speech and Language. I also vowed not to go on the internet too much and google things like “Will my child talk?” But I did… Stupidly. It says that children with Down Syndrome will typically say their first few words anywhere from 1 year old to 7 years old. On the one hand, there is valuable information out there. Yet, on occasion (like this one), I let myself be a glass half empty type of girl and focus on the negative… And that’s not good.

Sure, there’s masses we can do in regards to therapy to help our children walk, talk, learn, etc. But the hardest thing to admit is that most of it is simply up to THEIR brain and its wiring. There are no certain predictors that a child with additional needs will develop speech, be able to read, be potty-trained, or become self-sufficient. Good signs, yes. But nothing is certain. The not knowing is something I really struggle with.

In the short time Oscar has been on this planet though, I’d say he’s doing pretty well. I’ve had a couple of medical professionals say to me, the fact that he’s doing so well, is a good indicator that he’ll continue to move forward. But, there’s no certainty with anything is there? Oscar babbles just like any typical toddler does. Sometimes a lot. But of course NEVER when we see his Speech Therapist. I sit there, when she produces the “D” phonics card, willing him to start doing his usual “Dad dad dad dad”. But he doesn’t. I swear he knows what he’s doing, the little monkey. And when I’ve got my phone ready to record, to prove to said Speech Therapist that he can, of course he stops. He babbles at home… But not when anyone different comes in to the house and he babbles for Great Britain in the car. I think he’s trying to talk to the trees as they whiz past perhaps? But again, try recording on your phone AND driving. Never gonna happen.

Before you start shouting at the screen at me, I know he’s only just 20 months old, but communication is key, right? The trouble is, from an early age Oscar has been a growler. He doesn’t do it as much as he did but Oscar growled a lot in those early days. It’s very cute and is a big source of amusement when we’re in the supermarket… But it is a little odd, don’t you think? I don’t really know if this is just what children do… Do all children growl? I know one of Oscars friends quacks like a duck, and his mum thinks he’s a little cuckoo. Just for the record, it’s not a ferocious growl, more along the lines of a purring cat. I don’t want you thinking people are scared of him ;0)

We’ve always wondered why he did this and no one really knew. I’ve talked to Speech Therapists and they’ve said its a good thing, in that it’s noise, but I’m still unsure. It could be a sensory thing as perhaps he can feel it vibrating inside his head. Who knows?

When Oscar was 7 months old, I went to my first presentation given by a Speech Therapist. It was incredible to hear all her ideas and advice and so insightful but I came away that day with a heavy heart. I think it was probably one of the first times I’d really thought about the road ahead and some of the bumps we were about to encounter along the way. I guess the magnitude of it all hit me that day. I realised that speech wasn’t going to come easy for Oscar. If we wanted our little boy to do well, we were gonna have to listen and learn ourselves. Parents are the child’s primary teacher, we were told. Sure, a Speech Therapist will give you the tools, but we’d have to put them into practice. I felt sad again. Could I do this? I felt frustrated too, if I’m honest. Frustrated for Oscar that it wasn’t going to come easy. Sometimes life sucks. I listened intently, trying to digest every ounce of information she was giving us. I hadn’t realised that children with DS hear sounds differently. So we might be saying ‘ball’ but they hear ‘hall’. I hadn’t realised that the muscles around their mouths aren’t always fully developed (there’s that low muscle tone again), making it harder for them to make the shapes with their mouths. I hadn’t realised that because they are renowned for having bigger tongues, their speech isn’t always audible. And I also hadn’t realised that as many as 70% of children with DS have hearing problems, meaning that obviously it’s harder for them to take it all in and distinguish between different sounds and their clarity.

I remember around this time, I’d call Oscars name and he didn’t always turn to the sound. I’d do my own mini hearing tests for him. He’d react to my clapping or the squeak of his Sophie the giraffe but he didn’t always turn to my voice. I was told that when they’re so engrossed in something (like a toy) they’re not going to hear anything else (I guess much like my husband so maybe we can forgive Oscar for that!) Something that’s perfectly normal to us, like a washing machine on in the kitchen, can be problematical for them. They might be doing an activity where they have to listen to someone talking and all they can hear is that washing machine. Crazy! I knew at this point, I had a lot of exploration ahead.

I remember one of the other mummies who’d attended and who, I’m honoured to say is a very dear friend of mine now, texting me afterwards saying that she had to stop herself crying 3 times throughout the talk. I’m glad she’d said this as I’d felt exactly the same. Life REALLY sucks sometimes.

Now, I’ll give you a bit of back history about Oscar. After an initial hearing test when he was born, he had to go back to the hospital for a more detailed investigation. At this time, it flagged up that he had congestion in his ears (Glue Ear being the technical term) but we were told not to worry too much. We were referred for further testing and for the first few months of his life, he had regular check ups. Each time they always came back the same – that there was congestion in the ear canal. Oscar was a very snotty baby (sorry, too much information) but because of his heart condition, he was obviously more susceptible to picking up infection and during the first year of his life, he always seemed to have a cold. I use to think to myself, everyone’s hearings a bit dodgy when they have a cold right? What’s the point in testing Oscar when he’s full of it? It wasn’t until he was 15 months and we’d gone for a routine check up, that even though the hearing loss appeared moderate, the audiologist suggested we should do something about it.

We were told that we had a few options. We could either wait and see if the congestion cleared itself. But how long would that take? Would we be holding him back, as far as speech and language was concerned in the meantime? Obviously my first thought was, well let’s leave it and see if it clears up on its own… But in truth, I knew that if we did that, we wouldn’t be being fair to Oscar. Grommets were the 2nd option but we were advised that perhaps it’s best to wait til school age, as sometimes they put them in and they fall out (because our children’s ear canals are so small). They’re only allowed to do the operation 2/3 times maximum so if you do it too early, there’s more chance of it not working. And then she said it. “There’s also the option of the hearing aid”. I’m not altogether sure why I reacted the way I did to this, but I can remember thinking, Oh god, here I go again. Don’t cry, Sarah. Do not cry, you’ll look like an idiot in front of this lady. I guess the heart surgery was black and white. There was a hole, they fixed it. But with the hearing loss, I really felt upset that this could have a big impact on his development. I could have coped with glasses, I thought. If he had glasses, he’d have looked like that gorgeous kid off Jerry McGuire but a hearing aid!!!! It was, I’m ashamed to admit it, my usual shallow self doing the thinking (please refer back to my previous blogs regarding baby gap clothes and converse trainers). I didn’t want my little boy to wear a hearing aid. I didn’t want him to have Down Syndrome AND be deaf, that wasn’t fair on him. (obviously he’s not deaf but my rational side, yet again wasn’t playing ball). I’d seen children’s hearing aids before as a few of the kiddies at Oscars playgroup had had them and I knew they weren’t exactly subtle. None of this, “hearing aids are so discreet these days, no one will even notice”. No, babies hearing aids aren’t like that at all. Obviously, they can’t be too tiny for fear of them falling out and them picking them up and putting them in their mouths. The hearing aid the audiologist was talking about was on a thick cotton band.

She told me to have a chat with Chris and come back and let her know what we wanted to do. I knew we’d both be united on this. What was best for Oscar? This is our usual take on things. And getting the hearing aid was best. We felt we had to give him the chance to be able to hear things properly. What would be the point of him walking around hearing muffled sounds, when with modern technology, he could hear perfectly well with the aid. I needed to get over the vanity of it all and get on with it.

Oscar didn’t tolerate it at first. Every 2 minutes he’d remember it was on his head and whip it off. He’s getting a bit better now but he’s not the biggest fan of having things on his head, let alone a dodgy band. It doesn’t bother me as much him wearing it although I must get better at putting it on him more frequently, as a few friends of mine had never even seen him wear it. Proving just how rubbish a Mummy I am at making him wear it. I need to remember that Glue ear can not only cause deafness, but infection, pain, delayed speech development, temporary behaviour problems and poor school progress. If left untreated any of these conditions are likely to persist, possibly affecting long-term speech, language and educational development. People always say to me… awe he looks so cute with it on. He looks like a little rock star. The blue band goes with his blue eyes and bless them for trying to make me feel better. He does rock it, if I’m honest and who knows, the congestion might clear up once he’s a bit older. Here’s hoping.

Our paediatrician has been amazing at getting us all the referrals we need for Oscar. I have no complaints at all, however Speech and Language therapy is classed as the biggest area of need and the number of children on the waiting list, far out weigh the available S&L Therapists in our area. We’re currently on the list but we do have private SLT weekly which has been great. We’ve been introduced to Jolly Phonics already and Sound Cards. We have them at home now and every once in a while I’ll do them with Oz. It’s incredible to see just how much the children have started really watching the therapist when she speaks. She gives them the opportunity to choose and pick the sounds out and miraculously, they always get it right. (Maybe it’s the fact that she puts the card that she wants them to pick further forward than the other… or perhaps our children are geniuses). She also has bubbles that she blows onto their lips so the children start to move their mouths in response and anytime they even make a peep of a noise, she reacts with delight and mimics their sounds. It’s been said that with the early intervention of sound cards and phonics, some of our children go to school already reading and ahead of their mainstream peers. In your face, the 1950’s and your prehistoric attitudes!

We know that our children are visual leaders or learning through looking. They learn from watching others which is why it’s so important for Oscar to be around other children. We’re told we should use other children, “Look at what Polly’s doing, Can you do that?”

It’s important we show our children how to play, letting them copy us and promoting them to take the next step but then stepping back so that they don’t become too reliant on us as the adult. This encourages them and their independence. What we see, all too often, is that other children end up “mothering” our children. In that they copy exactly what we do. If Oscars on my lap, while all the others are sat on the floor, his friends will think he’s younger. I don’t baby him just because he has DS. I encourage him to play and explore. He might be a little bit smaller than his peers but he doesn’t get mothered by his friends and I love that.

We also know that one of the main reasons a child with Down syndrome might be a little naughty (or spirited as I like to call it), is because of the frustration they feel in not being able to communicate. I’ve already noticed it with Oscar. When he gets cross, he shouts, not necessarily making any audible sounds…. Just a very loud shout. He’s frustrated. He wants to tell me what’s up, but can’t. I guess that’s typical of any toddler but it’s more than likely that it’ll take Oscar longer to speak, therefore meaning we have a lot of frustrations ahead. We’re told that because they can’t verbalise, on occasion they might find a way of doing it physically. By coming over and pinching your leg or pulling hair, for example.

I’ve noticed with Ozzie and this is also a classic trait of a child with DS, that when his speech therapist is trying to get him to look at a phonics card, instead of looking at the card, he’ll be transfixed on her face, just smiling up at her. It’s called distraction and is his way of getting out of having to do work. He might only be 20 months old but I’ve got his number. If I sit in front of this woman and smile, I won’t have to concentrate. Or if I tilt my head to one side, I’ll look cute and she’ll forgive me. Or maybe I’ll start clapping to distract her. Classic Oscar Roberts behaviour. They have a desire to escape tasks. How can I get out of what I need to do? Basically, he’s finding it tricky, so he’s trying to get out of it.

Our biggest problem at the moment is that Oscar won’t sit still long enough to take it all in. I’m not complaining because we know how proud I am of my boy for his walking… But that’s ALL he wants to do at the moment. We’re told that children can really only concentrate on one area at a time. Oscars movement is what motivates him at the moment, not sitting and listening. I use to get frustrated thinking, we’re paying for these sessions Oz, please listen… But he’ll get there, in his own sweet time.

And that’s the point. All our children get there, just some take a little longer. So Oscar might not talk for a while yet, it’s really not that big a deal. I know for a fact he’s sitting there (ok wandering around) taking it all in. Every once in a while, there are glimmers of recognition in his face and I know he understands a lot more than I give him credit for, I must remember that. I asked Oscar if he wanted his milk earlier this week and for the first time he replied with “Mmmmm”. Obviously he wasn’t actually saying “milk” but it’s a start. Keep going, little man. I’ve realised recently, you cannot control, predict or plan all aspects of your child’s life. Time will tell. You have to accept the now and find the joy in each and every day, because life doesn’t ever stop moving. I’ll always remember a friend of mine who has a 9 year old little girl with DS, saying to me, that she used to worry about what other people might think or say about her daughter. But now, she’s so much more worried, about what SHE might say to THEM! I had to laugh! I’m sure in a few years time, I’ll be saying the same thing about Oscar… and that’s when the fun really starts. I can’t wait!!!!image image image image

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