Moms With Special Needs Children – Living and Loving Dravet Syndrome

There was such a great response to my last interview, that I wanted to showcase more moms with special needs children. What’s really come out in these experiences is that, while there are added challenges, loving special needs kids has its own set of rewards.

Meet Connor…

When and with what was Connor diagnosed?

Connor was diagnosed with Dravet Syndrome at the age of about 18 months.

How did you feel with the initial diagnosis? Did you have any clues beforehand that this was the case?

At first, I wasn’t too sure what Dravet was all about until I read about it on the internet. And then, my heart just dropped! I really didn’t think he had something this bad. I knew something was wrong with him because of the seizures he was having and I could see he was far behind in his development compared to other kids his age.

How does their condition affect your daily life?

Daily life is a real struggle because it all revolves around Connor’s behaviour! He pushes boundaries all the time to see what he can get away with and, if he can’t get away with something, then he throws stuff and does all he can to test your patience. It’s also difficult to do simple things like pop into the shops or go to the chemist with Connor. He will see something he wants and he doesn’t understand that you can’t just take it, so he’ll throw a tantrum in the shop. All of his extra lessons, like OT and speech therapy, take place at school.

What are your favourite qualities about Connor? Any cute quirks that just melt your heart?

He has a very good sense of humour, so we tease and joke with him a lot and he just laughs at us. He also loves being helpful and will make us pretend tea then bring it to us on a tray. That melts my heart.

What continues to be your major challenge(s) in terms of living with someone with this condition?

Managing his seizures as these children start becoming resistant to seizure medication. I constantly worry about him passing away in his sleep as many kids with this condition do, but we have just imported a monitor to alert us if he stops breathing or has a seizure, so I sleep a bit better now.

Another thing is his speech. We are constantly working on new tactics to help him because we can see he tries so hard to communicate with us, but he can’t always get the words out.

What have you learnt from being a mom with a special needs child? What joy has it brought you?

I have much more patience! Everything is on a trial-and-error basis. Sometimes, we take one step forward and then two back. Nothing happens overnight with Connor. Everything is a slow process. But, when we do see progress – like a new skill Connor has mastered – it’s a huge joy for us because all our work has paid off.

What do you want Connor to know?

That he is very much loved, even though he is a lot of work, and that we are doing all we can to help him!

How do you unwind / regroup (on a personal level)?

I try to do things for myself in the mornings when he’s at school; like have my nails done or go horse riding in the nature reserve. I also like chatting with the other moms at Connor’s school, just to remind myself that I’m not alone and I can do this!

What advice would you give to other moms with special needs children?

Try to speak or reach out to other special needs moms. It does a world of good knowing that you’re not alone, and you can give each other some tips and advice. Don’t be in denial, even though it’s hard. We all want to think that our child is fine; the sooner you accept that your child is different, the sooner you can get help for them. And lastly, have patience! Getting worked up will only upset your child and make family life worse.

Dravet Syndrome
Meet Connor, his mom, Stephanie, and his baby sister, Georgia.

 

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