Wednesday, 06 August 2008

• Autism as it stands in Northern Ireland

   I was quite angry with our paediatrician for giving us such a gloomy prognosis and the diagnosis for Autism. I was hoping that he might be wrong. He has referred us to the Educational Psychologist who will give the final statement, and we know it's going to be Autism.

  Today I'm actually very thankful that our paed pretty much gave us the diagnosis and here's why. It's been all over the media lately, that families in Northern Ireland and especially in the WELB are waiting an average of 2-4 years to receive the diagnosis (I'm assuming through the educational psychologist) and be entitled to the treatment options. That's the sad truth, that there are children with autism living where I am , wasting valuble years to receive treatments in the form of Speech and Occupational Therapy.

  And that's all there is....Just Speech and Occupational Therapy. As great as these services are, they are NOT enough for children with Autism. We are blessed to have been receiving there services since Josiah's infancy, and only now I'm very grateful and appreciative  of them.

  I am blessed to have an excellent Speech Therapist who offers me plenty of advice and help. We have begun using TEACCH with Josiah. I know that TEACCH really isn't the most wonderful treatment out there, but we are receiving something. Even better, the ST has made Josiah his own set of exercises and left them with me to work everyday with him. That alone is going to be more profitable as we only get 2 sessions of ST a month.

  I am not complaining about the services of Northern Ireland when it comes to Autism. There's a lot that needs to be improved upon. I have spoken with a mother who has used ABA therapy successfully with her son. They had to fund the expenses themselves. Here's the source of my hurt from the system: the funding of ABA therapy. According to some parents the LEA (Education boards) used to fund  the ABA therapy for some children but that has now stopped. Why? because of costs.

  For instance, if we were to go for the  intensive programme which Josiah would mostly benefit from with CEAT. The annual cost is £10,660 (around 21K US Dollars) plus traveling expenses of the therapist. Here comes the tricky part. CEAT is located in Belfast, 100 miles away. So some areas can't be offered the intensive programme due to travel time. You see the dilemma. Since there's no funding of the programme, families have to come up with the money themselves. THAT'S AN AWFUL lot of money. We are talking about someone's annual wages just to cover this programme. There are some charities that help with this cost, but still the majority of the cost lies on the family.

  As it stands, ABA has been proven to be very successful/beneficial for children with autism. It's an intense treatment, requiring 30-40 hours a week of therapy with the child. Most families like us would take the treatment upon themselves, attend few courses and give it their all.

  The good news: There is PEAT, a charity that offers free ABA therapy 2 hours a month. So we are on the waiting list for that.

  There are plenty of courses/seminars both in Ireland and the UK, haven't found the costs yet starting up shortly. So we are pursuing those.

  As for biomed treatment, the NHS won't have any of it. There are some DAN practitioners in the UK and you have to pay privately. Thank God that there are some charities who'd help with the costs. It's a road we haven't crossed yet. 

  There's plenty more of research and faith that needs to be invested in autism in Northern Ireland.  Children with Autism are short changed when it comes to treatment, it feels like they been given up on. It hurts...but at the other side of the coin there are plenty of options and doors to knock on.

  As a parent of child with autism I just can't sit and do nothing for my child. Kids with autism do learn, we just have to believe in them and put all our effort into it. No one ever promised  parenthood was going to be smooth sailing. I see a lot of sweat, tears, frustrations..

  Although the system can't offer  our children with autism the best and most advanced treatments , we can still  thank God for the internet and all these resources available to us. The whole responsibility of helping your child lies on your shoulders. It's quite a heavy weight, but so worth the trouble!!

  I leave you with photos of Sensei Judah

   

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