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Guest Post: Love, laughter and mischief: A little boy and his family's journey with Down's Syndrome

IamRiverIamRiver Member Posts: 2 Listener
edited July 2017 in Guest blogs

Firstly, I openly admit that my first born son led me into a false sense of security as far as parenting was concerned. It just wasn’t particularly difficult. A shock to the system, yes, and totally exhausting. But other than the first few months of the new parent fog, it pretty much all fell into place and I breezed through being a first time mum. He was just a really easy baby, always happy, chilled out, loving and a sweet little boy. We never had to baby proof anything and at 5 years old he is yet to have a tantrum. I may have even been a little bit smug and maybe a bit too confident about my parenting abilities.

Well then River came along 3 years later and opened my eyes! To be honest it was still pretty easy in the beginning, he was a very chilled out and sleepy baby, and kind of just fitted in with our family immediately. After a very fast birth, two days later we were out on a daytrip to a local farm and just slotted into life as a family of four. 

Mother holding baby in her arms

Later, at 6 months old, River was diagnosed with Down syndrome, which we now know is probably the reason River was such a quiet baby. It certainly didn’t stay that way though let me tell you. River, like his brother Skyler, is incredibly happy, funny and goes with the flow, yet he also has a whole load of stubbornness, determination and mischief rolled in there. I believe his personality is a blessing for the life he has been given, and his strong personality will serve him well. 

I am determined that I won’t put every challenging behaviour we face with River, into the ‘it’s a Down's syndrome thing’ box. It’s way too easy to do that. All children face behaviour challenges in their development, and often they are exactly the same challenges as people with Down syndrome face. The truth is though, that children with DS are more likely to engage in behaviours that can be problematic to their families and caregivers, and it can be difficult for parents to work out the best way to deal with it. I’m all for treating our children the same as any other child, but realistically our responses may need a little tweaking.

First and foremost it’s important to rule out any medical conditions as a cause for challenging behaviours. Hearing/vision deficits, thyroid problems, celiac disease, sleep apnea, anemia, reflux and even constipation can play a big part in children acting out and often when they are addressed, the behaviour will correct itself. Also, there is a higher rate of illness in our children, and children always play up when they are poorly! And the same goes for tiredness, it’s every parents curse to have a tired child and many of our children have sleep disorders.

I’m very lucky with River. He certainly has a feisty little spark, but on the whole he isn’t too difficult. So far anyway, he’s still only 23 months and I’m well aware that I have many challenges to come. There are a lot of parents facing much bigger things than me, from attention issues, social withdrawals, noncompliance, habits/compulsions, self-talk, aggression and so on. And the common worry for parents of children with DS, the dreaded running! I’ve heard so many horror stories from other mums and it’s terrifying. When I see River crawling out of the house as fast as his little legs will go and hiding under the car, I see a glimpse of my future. Knowing I’m constantly going to have to be alert and literally grow eyes in the back of my head is a worrying thought, and other than reigns and location watches I’m not sure how I will deal with it.

River is still very young, but we’ve already faced some challenges with him. Hitting and biting us being the main one, although funnily enough he has never done it in an angry way. Again though, I know this is not a DS thing, however I do think it was magnified by his inability to communicate well. Lack of communication skills is probably the main factor in behaviour issues in children with Down syndrome; they just struggle to get across their needs. 

River’s main reason for lashing out was excitement and frustration, and he would pinch my face, pull my hair, slap me and bite. We also breastfeed, and the amount of excruciating nipple bites I got was unreal. The memory of it makes me grit my teeth, but he was just using his actions to get the attention he needed, as he couldn’t tell me what he wanted. He also really wants to be walking, but his weak ankles just won’t let him. This must be terribly frustrating for him and he is an active little boy.

Parent carrying baby over their shoulder

It was so difficult to know how to deal with it, as it certainly wasn’t OK and was not going to be ignored, but at the same time it is totally normal behaviour. I decided on a positive approach and not getting angry, so we went with consistently reminding him to use gentle hands, and every time he hurt one of us we made him rub it better and we pretended to be sad. My husband, son and I were all on board with this, which is very important and it was surprising how quick he just got it and we are teaching ourselves Makaton to try and communicate more successfully with him.

I actually think the best piece of advice for anyone facing behaviour challenges with their child, is to reach out to other parents. It can be incredibly lonely when you are facing difficulties and having nobody who understands. There is nothing harder for a mum of a child with special needs feeling isolated and not knowing where to turn to for advice. There are many groups within communities and also online that can be a huge support to families. I live overseas with no support network and I have found it a huge relief, ‘meeting’ some wonderful people who I never would have without my online support. Sometimes not feeling so alone, is all you need to get back on track and confidently face any challenges head on.

It’s ok to accept that we are not perfect, and that being a parent to a child with special needs is hard work. Actually, being a mum in general is a huge responsibility and it’s scary knowing that the choices we make are ultimately shaping and influencing the futures of our children. So look after yourselves mums (and dads of course), and find a way to not stress yourself out over these issues.  Set aside time where you can just do something fun with your child, get your happy back and reconnect. It could be something as simple as going to a park and just running around together and laughing, just something that helps you remember that your child is perfect no matter what and strengthen your relationship.

Whatever challenges we face, I really believe in staying calm, it’s so much easier to tackle a challenge when you have a clear head and your emotions are in check. If I’m having a bad day, then it’s clearly evident in the behaviour of my children and me being stressed solves nothing. I really do think that the way we have decided to tackle things, has so far helped us see the end of these phases a lot faster. So take deep breaths (as my 5 year old likes to remind me!), and remember that whatever comes your way, you can cope. You’ve got this!

You can read more about River and his family on their blog I am River.

What are your experiences of Down's Syndrome? Do you deal with challenging behaviour differently if your child has an impairment, illness or disability? What advice would you give to other parents?


  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Thanks so much for this @IamRiver - I was wondering about River's late diagnosis of Downs Syndrome, did you have any idea before 6 months that he may have DS? 
    Senior online community officer
  • IamRiverIamRiver Member Posts: 2 Listener
    @Sam_Scope thanks for reading! Our story is pretty unique, not only was he not diagnosed until 6 months, but he wasn't even diagnosed in the Uk. He was born in the Uk, a home birth and everything went real well. I sensed that he had Ds, I don't even really know why, I just kind of new. We were sent to the hospital to have him checked over, but we were told he was fine and nothing to worry about. He was seen by many health professionals but all told us he was completely fine. We returned to Tanzania when he was 3 months old, and then at 6 months old he was finally diagnosed in Kenya. It really didn't come as that much of a shock though and I think even though I'd been told he didn't have it, I'd already processed that he did. I've written a blog on our birth story, it's a bit more detailed. Thanks again!
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