Wednesday, December 23, 2009

I count my blessings

As I type this today my son is quietly watching ben 10 in his pjs albeit with a heavy head cold and my daughter is out playing in whats left of the snow. I am still in my pyjamas and all is right with the world for now. Today I got up and thought what have I to be thankful for this Christmas? You see there are so many more people out there worse off than us, they may be struggling financially or not have their health or worse still have a terminally ill child and be facing into a bleak Christmas and New Year. Even though it has been a tough year for us with two children diagnosed on the Autistic Spectrum we have a lot to be thankful for, our children are healthy and happy and in a family that loves them for who they are and what they will become. We are by no means wealthy but are comfortable enough to give them a roof over their heads and food in their stomach and a safe loving warm environment.
It struck me that the thing I was most thankful for this year was my fb Autie friends, you see they have been my salvation at the times I needed support and help the most. I have laughed with them, cried with them and shared my inner most thoughts with them as they have done with me! I feel TRULY blessed to each and every one of them come into my life indirectly through my children. You see the diagnosis of my children have led me to this very special group with which I share the highs and lows of my life and they don't judge me as they walk in the same shoes as I do. To all of you I wish you all a very heartfelt happy Christmas and a Happy New Year and I hope next year will be better for all of us and no matter what I will be there for all of you just as you have been there for me. Much love to you all. xxx

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.