J's New Beginning

So I have been away for a while. Coming up to 35 weeks pregnant has taken its tolls but mom has been a busy beaver.

Following on from my last post, I have taken it upon myself to take matters into my own hands with regard to J. I could not rest easy with the 2012 date before Autism Services could see him so I rang them directly myself and spoke to a lovely woman. I absolutely spilled my guts about how J was struggling socially and how his sensory issues had him a nervous wreck. Our biggest worry however was and still is, his communication. Although he never stops babbling and speaking and he knows the name of everything, his receptive communication is so delayed and we just cannot seem to engage him in conversation. He just doesnt understand!! He gets lost in echolalia. A misunderstanding can lead to the most incredible meltdowns. J will be 4 in 2 weeks time and he still cannot understand questions like "So, what will we do today?" and he cannot follow more than one direction. All I was looking for in that phonecall was direction...someone to say it was going to be ok. That was when she told us that although she could do nothing about the waiting list, the results of his psychological assessment were enough for him to qualify for a place in an ASD pre-school as part of a mainstream school. He has a working diagnosis for ASD. I couldnt believe my ears. From working as an Special Needs Assistant myself with the Department of Education for 5 years, I knew the system and I knew that this would be perfect for our little man. " At last", I thought.

So we were faced with another dilemma.......places available. I rang every school out there with an Autistic unit but all I could do was put his name on waiting lists. It was like one step forward, 2 steps back (I know youre all singing Paula Abduls song in your head now...lol!)

I still however felt we were making progress. He continued going to his playschool which was great for him socially but everyday when I collected him I was faced with the reality of sensory overload. It would hit him after sitting in quietness 10 minutes after collecting him. We would get home and he would spin and rock and scream and cry most days. Then there were the day where he would sit in silence staring at the tv, absolutely zoned out. No speech, no eye contact...nothing!! The playschool was too much and we decided to reduce his time there to 3 days a week.

Then it came....the phonecall!! He had gotten a place in a brand new ASD preschool and they wanted to meet us the following Tuesday. I rang my husband and we literally squealed in excitement. This was it.....a new start for J.

However, I will never forget and will always appreciate the time, love and dedication that came from his playschool. The ladies working there gave so much to J and went out of their way to educate themselves about ASD. It was a very emotional day when we had to say goodbye. The lady running that playschool was a privilege to work with and I hope her services will still be there when it comes to our new baby needing a place. She was also wonderful all those years ago with our eldest son. I will forever be grateful and J will miss her dearly!!

So where are we now??? People ask me the whole time about how the school is suiting him and I tell each one of them "we have a whole new boy". The difference in him is not just noticeable...its dramatic. He is in a sparkly new classroom with his teacher, 2 SNAs and only 3 other children. Everything is specific to his needs and he is thriving. He even has the most adorable little school tracksuit to wear. They just "get him"!! Any parent with a child on the spectrum can understand what I mean by this. There hasnt been any miracle cure but when I collect him now he is so relaxed and content. He is finally taken the first step in completely the right direction. I just feel that now everything is going to be just fine.

However in the background, I am still digging my heals in with regards to finding out exactly where on the spectrum he is. I lodged a formal complaint with the HSE with regards to the date we were given for his diagnostic assessment and the Complaints Officer, Assessment of Need Officer and Liaison Officer I am going to work with all seem wonderful. I couldnt fault them. We'll just have to see how it goes over the next couple of months.

I have also reconnected with Js early intervention psychologist who has agreed to let us complete another Social Communication Questionnaire (SCQ) with a more focused approach. This is the part of his psychological assessment that parents contribute to. I just feel I didnt give an honest account when I completed it nearly a year ago. I never realised the implications....I never wanted to admit how delayed he was socially and communicatively. I have learned recently that this SCQ was the only documentation that contradicted all that every therapist he had met with were saying about his development. I cant help but feel I am partly responsible for Autism Services not taking his case seriously.

We applied for a Domiciliary Care Allowance (DCA) in February as recommended by our AOM Officer and met with the HSE South's chief Medical Officer. He was baffled as to why we had to wait so long. He decided to do his own assessment and testing with J from which he diagnosed ASD. We were granted the DCA but unfortunately his diagnosis wouldnt be recognised by the school. We are very aware that the school only have a working diagnosis to work from and are terrified he will lose his place in the pre-school.

What a gentleman that doctor who is the Chief Medical Officer turned out to be. Off his own back he met with a colleague, discussed our case and manages to get us an appointment with somebody who's diagnosis will be considered. He is based in Waterford Regional Hospital and he is the head Child and Adolescent Psychiatrist! HALLELUIA!! Appointments with this man are like gold dust and J was referred to him. We are due to meet him mid May. We just cant believe it!!! Somebody is really looking out for us!!! We are getting somewhere.

So thats the story so far. J is also thriving in Occupational Therapy and has just finished his first block of Speech an Language Therapy. As parents we have to FIGHT FIGHT FIGHT for our kids. The HSE will never do all that is needed unless they are tormented and made aware of each and every case.

I have a beautiful, friendly, happy little boy who is bursting with personality and has so much potential. He is as bright as a button and I will not rest until he gets everything he deserves. I really hope as soon as I have has our baby and I am well again I can help, educate and encourage parents out there who are going through the same process. Awareness is everything.

Autism and all areas of the spectrum need not be the end of the world. J has made me a better person. As a family unit nothing can get in our way....heres to our wonderful future

http://www.youtube.com/watch?v=ekcMdyu8ysk