Sunday, December 20, 2009

Light at the end of the tunnel

We now had to adjust ourselves to a life of constant monitoring and medication to be given twice daily and somehow we adapted to this way of life and it became our "norm". This was not to be the last seizure Kyle would have as on the 22nd of December 2006 he had the worst one to date and we were on the merrygoround again. Fate was smiling on us that day as luckily a very good neurologist from Crumlin had his clinic in Tallaght hospital that day and Kyle's paedatrician requested to see him so he could examine Kyle. Thankgod he did because that was the day this fantastic man took over Kyle's case and we haven't looked back since, it was also the day that Kyle had his last seizure so we are now celebrating him being three years seizure free on Tuesday.
We began to realise that more than epilepsy was going on with our son, his speech was very poor, he had lots of words but could not put them into sentences, his balance was clumsy and he always banged into things and he dropped everything in sight. We decided to go to a speech therapist to see what was going on and she very calmly told us he needed a educational assessment to see how much he understood. This was a blow but we duelly did what she said and went for the assessment.
This was to be a very difficult task for Kyle and in the end he could not be tested as she felt he didn't understand what was being asked of him, I don't know what happened me during that time but it was like a lightbulb went off in my head and I blurted out "Do you think he is autistic" She looked at me and said well thats not for me to say but things can be done for autism and its not the worst thing in the world. She may as well have come out and said it and as we got into the car I faced my husband who was shellshocked and said Our child is autistic, we sat in silence on the way home and as soon as I got there I went straight onto the internet to look up Autism, lots of thing hopped out of the computer at me and I realised Kyle ticked a lot of boxes. My heart sank, its bad enough that the poor little thing has epilepsy but dear god Autism as well, This was just too much to bear and I retreated into myself, barely functioning I started on the round of speech therapy while we waited for a assessment from the eminent Prof Fitzgerald. We got it sooner than we expected and before we knew it we found ourselves in a garden shed at the bottom of his garden, This was to be a experience and one that I will not forget.


  1. Jeepers, Andra! You write so well! Congratulations on being nearly 3 years seizure free! I remember so well trawling through the internet - Button ticked nearly every box, and each page I looked at my heart sank a little lower. Can't wait for the next installment xx

  2. Thats great that Kyle is three years seizure free! Hopefully you don't have to go through that particular merrygoround again. Its funny how we all have our "penny dropping" moment when it comes to the autism and remember it well. That feeling as if someone has ripped your insides out and stuffed them back in all higgledy piggeldy. Nothing is different, but everything changes! I too visited the shed in the garden and won't forget that day in a hurry either. Looking forward to reading the next part of your journey and hope that you are finding blogging cathartic xxx

  3. Andra I love your story so much. What a stroke of luck to meet that neuroloigist...3 years,eh? that's brill news.
    Our A-Ha moments can be compared to remembering where you were when Elvis died. can't wait til your next post xxx (p.s it's jean posting, i seem to be logged on as Himself) xxx

  4. The shed in the garden is burned into my mind, but no surprises for us as did the internet thing too so had it figured out. Well done on 3 years seizure free, thats fantastic:) Jen

  5. That's fantastic about being 3 years seizure free Andra! It is so tough getting that light-bulb moment re: Autism.

    Lovely writing and I too hope you find blogging helpful. xx Jazzy (am signed in as WiiBoy!!)

  6. congrats on being 3 years seizure free. long may it last.
    your story is amazing so far

  7. thats great news about the seizures, great blog xx