It’s amazing now as I write this, I have a total different outlook on ‘severe’ learning disability to when it was first mentioned as the doctor rattled off a number of issues that would make life more challenging for my son Tadhg.
When a paediatrician / GP says your child has a severe learning disability and you’re looking at your 10 month old baby in disbelief, it’s hard to conjure up all the emotions that you go through at that moment after hearing a diagnosis. It’s like being hit with a physical force, I now understand the meaning of ‘knock the stuffing out of you’ as that’s literally how I felt that day. Firstly, I didn’t even know what his diagnosis meant, how it would affect him, so any question myself and my husband could think of, we threw at the paediatrician looking and hoping for him to tell us that Tadhg will be fine and there’s a cure for his condition. It took about 10 months from that date to realise that we couldn’t ‘fix’ Tadhg and that realisation also came with a flood of guilt, grief and anxiety as to how we were going to help our son to have the best quality of life and reach his potential whatever that might be.
I’ve always been told it’s best to be thrown into the deep end as you’ll learn to swim much quicker but when you don’t know the type of ravine you’ve been thrown into, it certainly takes a lot of time and a lot of practice!
I kept thinking of the language that was used that day ‘severe’, ‘profound’ – these are just two of the words used to describe my son’s condition - how can you possibly have a positive outlook when a specialist is telling you your son has a severe to profound learning disability which will affect him both physically and intellectually, he may never walk unaided, talk, and will need help with all his basic requirements. Well I’m glad to say it can be done and being positive and staying positive is what got us through this diagnosis. It’s not easy and can be a rollercoaster at times but what they couldn’t tell us was how Tadhg would develop his own personality and be his own person – yes he needs help with feeding, toileting, walking etc. but that doesn’t define him as a person. Tadhg is an amazing child with amazing qualities and certainly changed my perspective on a lot of things. This may sound an unusual thing to say but initially when Tadhg was diagnosed, I thought his diagnosis would define him but of course it doesn’t. Tadhg has a unique personality like everyone else and expresses him self in his own way. We as a family have learnt so much from Tadhg, he has taught us not to assume that because he is unable to talk that he isn’t ‘saying’ something or if he’s laughing hysterically doesn’t necessarily mean he’s happy, it could be a pain that triggers this type of laughter. I have learnt that repetition is the key to Tadhg’s development and not to give up, it may take years doing the same thing every day and then one day Tadhg will do it. Not to get disheartened when he doesn’t do it again for another year, and to always stick with it. I let Tadhg guide me and once I observe and follow, I generally think we get it right.