Thursday, January 14, 2010

The need for sameness!

While I sit here relaxing with my third cup of tea today, I am aware of the silence that surrounds me and how much I like it. I now have finally been able to despatch my children off to school and all that remains is a delicious silence and emptiness in the house and it made me realise how much I value that sameness in the days that the children are being educated.
Let me explain, our children need routine in order to get them from A to B without any interruptions or meltdowns, we all follow certain patterns in order to avoid any un-necessary hiccups along the way and hope there isn't any change in events that would cause a major bump in the road for them.
However we too have this desire for sameness, we all breathed a sigh of relief at getting them back to school, we follow routines every day ourselves, we bring them to school, we collect them, we do homework with them, make dinner etc. We all follow a set pattern with one difference between them and us, they need help to transition into their routines whereas we can cope with curveballs thrown at us and not throw a major wobbly over it, yes it might be a inconvienence to us but nothing we can't handle.
Take me for example, when they go to school I do not have a shred of noise in the house, no tv is put on, no radio, I have to have complete silence in order to preserve my sanity before the onslaught begins when they return. This has become very important to me but if it was shattered briefly I would be able to cope, this is not the case for our children. I now have a finer appreciation for children that go around with their hands up to their ears because they cannot filter out the noise that comes at them, I get where they are coming from and how distracting that must be for them. I also get the fact of why they act up if routines are not in place because I too can be upset if something crops up out of the blue.
Today I waved two very happy little children off to school pleased that not only where they going back to routine but I was as well and oh how happy that made me!

Tuesday, January 12, 2010

And so the fight begins

I now had school to contemplate for our little man, he was going to be five shortly and ready for the next step of his life, however this was not going to be easy and clearcut like it is with most parents this was going to be one of many battles that I would have to fight for him. The Prof had said he thought he was a suitable candidate for mainstream school but only with the presence of a full time sna. I approached the school and they were very good in telling me what I needed to get from the hse in order to prove his needs and strengthen our case for a sna.
In the middle of all of this he was referred in Beechpark Services where they did his assessment of need and also where Hubbie and I did the Early Bird Program. It was only when we got here that I realised the full extent of what we were dealing with. The other parents at the course were just as bewildered and distraught as we were and I realised we were not alone. All of our children had varying degrees of Autism and it was quickly pointed out by the team that our little man was what they called the mildest in the group. I thought well try being at home with him 24 hours a day and maybe you would change your minds instead of the half an hour observing him once every couple of weeks! I was made feel as if he was so mild it was of no consequence and could be managed so therefore don't bother us, well I wasn't having that and said as much which went down like a lead balloon, we then were told that because he was going to mainstream school he wouldn't be eligible for their services and basically there's the door don't let it hit you on the backside on your way out. We were left in the wilderness with no-where to turn, what do we do now? Our only alternative was to get his interventions privately, he needed Slt and Ot by the bucketload, the list of things wrong with him multiplied when we received the assessment of need report, I no longer look at them because he still is my little boy that I love and all the labels he now has does not define who or what he is.
We are fortunate we are in a position to provide what Kyle needs but other people out there are not and they are at the mercy of the HSE and their local health boards as to whether their children get help or not. For some it depends on where you live, some counties provide the services through the health board and some do not, I have heard of incidents where families uproot themselves just to get their child the help they need and move miles away from family and friends. Some are lucky enough to get their children into outreach programs and asd units in mainstream schools and other are really fortunate in getting their children into Asd Schools specifically catering for children with Autism. The rest of us are not so lucky and a lot of children end up in mainstream with no intervention what-so-ever other than the resource hours their diagnosis qualifies them for. Its a constant battle for parents no matter what option is available to them and one I am prepared fight tooth and nail in order to help my son and daughter achieve their fullest potential in life.