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.


  1. isnt this country just a joke! i never did that course and im glad i didnt. Even though AJ is in a beechpark run school, they stopped his OT and he doesnt get any in school because limited staff. Its a joke!
    Way to many kids are being let down by this country

  2. The stories I hear about the lack of services for children make my blood run cold. I have heard several about BP. I haven't fought any of them myself, yet, but only because the battle hasn't arisen. Its good to know the lines they use and what to watch for, thank you:) Jen

  3. ive heard it all, too mild for services, grrrrr i will need anger management therapy soon lol

    jesus andra thats sickening, cant wait to hear the battle of andra xx id say its a kick ass one

  4. It's a sin and a shame that the services you can get for your child depend on where you live! I am really lucky that I haven't had to fight for help for Button, but i don't take it for granted, believe me! Well done Andra! xx

  5. Um, wasn't the big amalgamation of the local area health boards and the extra level of administrative staff were to fix that - DOH! they forgot to order any more clinical staff. Silly Billies!

    Bunch of wasters Andra, Friggen wasters! xx

  6. It is so interesting that you wrote this at this very time because Griffin's school is about to tell me that they are going to take away his speech services at his school. And like you, I am going to fight tooth and nail to make sure he gets what he needs. It is obvious that he needs the services and would be lost in his mainstream classroom without them. I am just livid about it!

    My heart goes out to you because I know exactly what you are going through and it is no easy path to have to fight for you children's rights. I wish you the absolute best and I know that you are a very strong woman and that you can get what you set out to do because you are your children's greatest advocate!

    I am so upset by this my fingers can hardly keep up with my mind as I am attempting to type here LOL! Best of luck to you! I think that I will blog about what is going on too but our meeting isn't until the 25th. I have been begging for an IEP since the first day of school in Aug. and they just kept blowing me off and here it is, school is almost over and all they are going to do is have a "meeting" and not an Individual Education Plan so I am Pissed off about that!! Pardon my outbusrt!!!! But I think you know where I am coming from.

  7. Andra it is beyond belief that geography dictates the services our kids have access to..what the child needs seems to be completely ignored. Bob is among the lucky few in this country as he goes to a great outreach class and will get OT/ST until he is 18 by our brill autism team (despite some bueracratic atempts to make us move)...as long as the plug isn't ulled on them of course.
    How dare BP minimise your child's autism...when I was nursing I often heard people say "I have a wee touch of diabetes"...i didn't know whether to laugh or cry.
    You are brill coz you see it like it is, and I have no doubt your dude will get all the input he needs, despite the HSE and not because of them XXX