If you’re a parent of a child with Down Syndrome or also like me, have worked with a child with special needs, you know that success happens a little bit, every single day. Albeit in very tiny baby steps, but it does happen. I’ve learnt that that’s true of my Oscar. That the things that wouldn’t be such a big deal when raising a typically developing child, in our house, become the biggest triumph imaginable. Tears of joy, cheers of pure delight, sighs of relief (that he’s actually mastered it), and it has been known, that I might have even done a bit of a happy dance in moments of real excitement. We clap and cheer A LOT. When Oscar puts his spoon in his yoghurt pot, appears to take a spoonful and even if we haven’t quite mastered getting it in our mouths yet (we do a lot of waving the spoon around still), we’re just super chuffed that this time last week, he hadn’t even thought about putting the spoon in there. People say children grow up too fast, but I guess Oscar really hasn’t. Developmentally he’s not doing badly, but against his peers, he’s doing everything at his own chilled pace. Just a few weeks ago on Valentine's Day, at 19 months old, he walked independently. It was, in its simplicity, success in its purest and most beautiful form. In that moment, I felt like my heart might burst with pride but it had obviously taken us a while…
There is no such thing as a typical child with Down Syndrome. Our children are as different from each other as are all children. There are of course, books and information online which list when the average child with DS is likely to sit alone or stand… But I try not to look. It’s only for this blog that I googled “When does a child with DS usually walk?” And it says anywhere from 13-48 months. Insane that it’s such a wide timescale hey?
Because of certain physical characteristics, which include hypotonia (low muscle tone), ligamentous laxity (looseness of the ligaments that causes increased flexibility in the joints) and decreased strength, children with Down syndrome don’t develop motor skills in the same way that the typically-developing child does. Children with Down syndrome apparently fall into two basic categories of temperament: motor-driven and observer. Children who are motor-driven tend to be risk-takers. They like to move fast and tolerate new movements and positions. They do not want to stay in one place and dislike being stationary. This, without a shadow of doubt is Oscar. A total risk taker. Just yesterday morning, he was in his cot and Chris had been in to him to give him some toys to play with (just to buy us 20 more minutes of sleep… 20 minutes might not seem worth it but it WAS 6am) when suddenly, we heard a thud. He’d fallen out. After the initial panic, was he ok? Had he bumped his head? We stood there in disbelief. He had either climbed out or leaned out and lost his balance. Either way, this kid has far too much confidence. Surely it can’t be time for a big boys bed? However, we may have to invest in some crash mats. Later that day, we found Oscar half way up our stairs (thank god we found him). He’d never climbed the stairs before. He hadn’t even attempted it. Needless to say, yesterday afternoon involved rushing trying to buy a stair gate. Children who are observers are more cautious, careful, and want to be in control. They prefer stationary positions and are easily frightened when learning new movements.
We’re told that children who are motor-driven will take risks to take independent steps and will be undeterred by frequent falls. Observers will be more cautious and will only risk independent steps when they are sure of their balance. Understanding Oscar’s temperament and what motivates him has helped us be more effective in helping him learn those gross motor skills. We’ve known which activities he is likely to enjoy and which activities he is likely to resist. Anything that involves chasing a ball was usually a big hit. Or standing on the other side of the room waving my phone at him in temptation, usually prompted him to move quicker than a flash.
I’ve often heard of people talk about when their daughter first talked or when their son first pee’d in the potty and didn’t really pay much attention. Now it consumes me. I’m sure I’ll get over it. Oscar smiled at 6 weeks, rolled over and back again by 6 months, sat at 7 months, moved an object from one hand to the other at 8 months, bum shuffled at around a year (he never crawled), pulled to stand at 14 months and like I said, just a couple of weeks ago, at 19 months started walking. I’m guessing if you have a “typical learning” child you wouldn’t be able to quote when they did the above, right? I’m sure with Alfie, my second son, I won’t either, but with Oscar, it’s different. I’m hoping he’ll achieve everything he sets his mind to but as I said, It just might take him a little bit longer to master. I’ve told Chris to hold fire on the buying of a lift pass though, as skiing by the time he’s two, might be a little adventurous ;0)
At 5 weeks old Oscar was referred by his Paediatrician for having low muscle tone… Or a less technical term, a floppy head! Fast forward to him now, and there’s nothing wrong with this kids head…. Well, apart from that it IS pretty big… As is Alfie’s apparently, as our GP told me the other week (There they go again, the test of a turnip). I had to explain that Chris has really quite a big head and that it was probably where they get it from. Sorry, I’m digressing… Anyway, we were put in touch with Jane the Physiotherapist who has been there to show us exercises (oh wait, not exercises… we’re not allowed to call them that are we, Jane?), the “fun games” you can play with your little one, that encourage them to improve in their gross motor skills. When Oscar was first referred he always lay with his head to one side. She helped us with his side lying, with lying on his tummy moving his head side to side, pushing up, sitting up, pulling up and eventually walking. Occasionally she upsets me when she says things like “Oscar will need some special supportive boots for when he starts walking”… It makes me cross, thinking, MAYBE HE WON’T. Maybe he’ll walk early and without support but of course she knows best and the “special” boots, I have to admit, actually worked. Sometimes I just need to suck it up and stop being so superficial. So he’s not wearing the Converse trainers I so wanted him to wear just yet… he will in time.
Jane comes to our house every other week for his physiotherapy session and he has hydrotherapy in the pool, every second Wednesday. It’s been amazing. He loves his swimming. The first time I went to the pool with him though, I felt really sad. You know those clips on “Children in Need” which make you all emotional, when you see these kiddies going through such horrific things? … Well yeah I thought it was like that. I felt like an extra on a Children In Need VT. There we were. My Oscar in the pool with children who had such a wide range of complications. This wasn’t what I signed up for, I thought. (Another one of my selfish selfish “why me” moments). But in time I’ve got over it. I realised the children in the pool were actually doing just fine. Some of them, who couldn’t before, walk in with the biggest beaming smiles, that screams “Look at me. Look at what I’ve achieved”. I never feel sad anymore. If anything I feel happy. Happy seeing that along with the others, my little boy is thriving. He loves the water… and if anything, I’m very relieved we’re not paying the extortionate fees that some of my friends are paying for swimming lessons. God bless the NHS for our Bi Weekly FREE swimming classes!!
I struggled with him not crawling though. I so wanted him to do it but I could see him start to lag behind when all his friends were off. It wasn’t for want of trying. He’d lay on his tummy and his knees would come up. He’d try to push himself up but he just hadn’t got the strength. Maybe he’ll be a bottom shuffler everyone kept saying? Maybe! But I didn’t want him to be. I wanted him to crawl. Crawling helps stabilisation, says our physio. We NEED to get the crawling Ozzie, was what I was thinking. Pushy parent alert. I could feel myself losing my patience. That’s one of the qualities a parent of a child with DS is suppose to have you know – PATIENCE. I’ll have to work on that. I guess having DS, means that he can be excused if he didn’t crawl by his first birthday, if he wasn’t walking by his 2nd and talking by his 3rd. I guess it’s easier for us to be forgiven, and so very hard for a parent of a typically learning child, if they haven’t quite grasped the whole walking thing by now. Harder for them perhaps? Who knows? Being a parent is a constant worry regardless of typical or not. Milestones are there because someone’s written them down and recorded what is the “norm” but in my experience, every single child is so very different.
I’ll come back to the fact that Oscar is made up of our genetic makeup. 50% me and 50% Chris, more than he is that extra chromosome. So I guess the fact that I used to dance professionally and Chris does silly events like running across the Moroccan Desert, running 152 miles in 7 days (insane) or cycles up and down mountains for fun (weird), that he stood a pretty good chance of doing well. Chris however, hasn’t got the best concentration skills (sorry babes you’re getting a bit of a bashing in this one). He’s the type of person that if you talk to him when the TV’s on, he literally CAN NOT hear you…. So I’m not altogether sure Oscar stands much chance in the cognitive skills category. Chris’ mum told me recently, that he was on hyper calm pills when he was younger… Which again doesn’t bode well for the future with Oz. Oh dear!
Back in January 2013 I went back to work. Oscar was 6 months old. When Oscar was born, I remember saying to Chris that I was adamant that I wanted to go back to work. At no point did I want this to mean that my life became DS all encompassing. I loved my job. I needed my job. But by March 2013 I realised actually, I loved my baby more. Now I know a lot of people would say that… But Chris and I were in agreement, that knowing how important the first few years of a child’s life is anyway, that we would never forgive ourselves if we turned round in 18 years and said, we didn’t do enough at the start or that we weren’t around. For now, I needed to be with my baby boy. I still teach my one class a week, to the gorgeous PSDS kids though (Parents Supporting Children with Down Syndrome). I have thrown myself into him and making him the best he can be. Early intervention is what they say, right? Don’t get me wrong, I have my own life. It’s not all about Oscar… but in truth, for the moment, a lot of it is.
Oscar regularly attends Speech Therapy, Occupational Therapy, Music Therapy, Portage and Physiotherapy. Not because he desperately needs them all but because research says that with help and guidance from an early age, our children will grow to live a full and active life. Just last year Jimmy Jenson a 48 year old man who has Down Syndrome completed the New York Marathon. Incredible. I couldn’t even run to the end of the road at the moment so I’m very impressed. (Must. Lose. Babyweight)
The thing I’ve come to realise and I’m ashamed to say it, is that before I had Oscar and worked with the beautiful kiddies I teach, I had a picture in my mind of what a person who happened to have DS looked like. I had a sad image in my head. I pictured someone a bit older, walking through a shopping centre, holding hands with a carer. Harsh but true. I’ve realised though, that (and this is a bit of a generalisation as I’m aware that some are doing just brilliantly) these men and women I’m perhaps thinking of, were born in a time where there was little or no intervention.
I did a little reading in preparation for my blog this week, about how life would have been back in the 1950’s. I wanted to try and understand how far we really have come on. If I had left hospital with Oscar in the 1960’s, I would have left holding a piece of paper officially deeming him “uneducable”. I don’t even think that’s even a word these days!!! He would have had no right to an education at all.
I found some information on a lady who had a baby born with DS in the 50’s. She talked of the fact that no one told her she was a mongol (her words) at first, and when they did, it was when they came to take her away to an institution. She’d refused to let her go and her family turned against her as they were deeply ashamed. She brought her home against their wishes and everyone told her she was making a huge mistake. She had a friend who had a baby at the same time, but the friend would never let the children play together because she was frightened that her daughter might catch “it”. She couldn’t go to any coffee mornings or toddler groups for that very same reason. She never went to school. She stayed at home all day, every day until she was 12; when she died.
It seems absolutely unbelievable that it wasn’t until the 1971 Education Act that it was decided that no one was “uneducable” after all and children with Down Syndrome started to be entitled to any education. At that time people with learning difficulties were categorised as “educationally subnormal – medium” or “educationally subnormal – severe” and sent off to an appropriate special school. In 1981 parents were for the first time, given the opportunity to send their child to a local mainstream school, but it was unusual, there was little specialist teaching and schools were given little help. It wasn’t until 1995, that the Disability Discrimination Act entitled children with Down Syndrome to attend their local mainstream school and not until 2001 that the Special Educational Needs and Disability Act put in place a framework that would actually give the system a chance of working.
Even though the lady brought that little girl home and cared for her, it’s devastating to think that she was seen in the eyes of society as worthless. They didn’t have the intervention, like the Physiotherapy sessions we have these days and so what possible chance did she have?
When I think about the children I teach at the moment, they are all between 7-9 years old and are unique people with strengths and talents. They ride bikes, they swim, they play rugby, take dance classes… Hey, some of them even ski. The man or woman in the shopping centre, is an outdated stereotype, that isn’t a true indicator of how our children will be, living in THIS time. Oscar and his friends have been born into a world, where they are valued and given the opportunities to thrive, and my god, are we gonna help them!