|On holiday in Ireland with Mum, Dad and 2 brothers|
Why did you decide to become a special education teacher?
|My Graduation in 1999|
Tell us about your sons
Hugh was born just 14 months after Sean in 2010. Just looking at Hugh fills me with a warm glow. There is something so perfect about him and just sitting and holding him can fill you with such peace. He seems to have a profound effect on people. Anyone who meets him falls in love him. I am so incredibly proud of both my boys and love them both very dearly.
After all the experience you gained teaching special needs children, it must have come as a shock to find yourself on the other side of the fence with your own special needs child?
I’ve met and worked with children with severe autism, Downs Syndrome and all manner of physical and learning difficulties but I had never imagined what having a child as profoundly disabled as Hugh would be like.
On paper it sounds depressing. I think that if I had been presented with a list of Hugh’s difficulties when I first began to suspect that something was ‘different’ about Hugh, I’d have been terrified, heartbroken. But that list of all the things my son can’t do, all the things that are ‘wrong’ with him, tell you nothing about his wonderful sunny personality, his smile that literally lights up his whole face, how he has the cutest giggle imaginable. He might be profoundly disabled and have complex medical needs but first and foremost he is a little boy; he is my little boy.
Does that mean you’re always on high alert, ready for a hospital admission?
How difficult is it having two little boys not that far apart in age when one of them is often rushed to hospital in an ambulance. How do you explain to Sean?
Phew, it's such a lot for you all to cope with, Emma! Do you have any access to respite care?
Thankfully though, around the same time Hugh's seizures started to become more controlled and we didn’t need to resuscitate him quite so often. Over time I managed to get him back into his short-break sessions (with his carer) and organised for another four hours a week in a special needs playgroup – again with his 1:1 carer. I find it easier to leave him with a trained carer, as I know that he is their sole responsibility and I’ve been lucky that the carers we have had have been absolutely lovely and he’s bonded really well with them.
|Brothers doing what brothers do|
I've heard an awful lot about SWAN UK this year, how did you become involved with them?
Hugh still doesn’t have a unifying diagnosis to explain all his complex medical needs and developmental delays. Chromosome analysis has indicated a rearrangement of his chromosomes but this in itself isn’t enough to explain his difficulties. Genetics have looked for evidence of anything that might be missing or duplicated in his chromosomes but are yet to find anything. Initially when we were told this, I was devastated. I wanted to know what was ‘wrong’ with him – something I could explain, something I could Google, something that would give me an indication of what the future held. Not knowing was frightening and isolating and I genuinely thought we were the only people in the world without a diagnosis for their child. I searched the internet late into the night, desperately searching for answers until finally I found someone in a similar position without a diagnosis for their child.
At last I knew I wasn’t alone. Some months later SWAN UK was re-established and we both joined. It turned out there wasn’t just one or two of us without a diagnosis, but in fact approximately 50% of children with learning difficulties don’t have a diagnosis. It was such a relief to realise we weren’t alone. The needs of the children all varied but the fact we had nowhere else to belong united us. I took an active part in the group, joined the advisory committee and wrote posts for the newsletter and blog. All these things really helped me make sense of our experiences and hopefully helped other people too. Perhaps more importantly though is the chance it gave me to meet other people who understood the fears and frustrations of our journey. I have made some amazing friends through SWAN UK.
Emma, I think you're one of the most amazing mums I have ever met. Thank you so much for sharing your story. We'll finish with the poem you dedicated to Hugh.
God Gave Me A Special Child
I am strong