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.
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.
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?
