Tuesday, January 25, 2011

Kids With Special Needs Around The World: Ireland

I recently met Jen on Twitter; she's from Dublin, Ireland, and is a mom to three kids, one of whom has autism. She describes herself as "wife, taxi service, blogger, internet addict, head cook and chief bottle washer." Jen works part-time for Irish Autism Action and blogs over at The King And Eye, where she refers to her son as HRH: His Royal Highness. Please give her a warm welcome!

My son, HRH, is 3 years and 3 months old. He is a very gentle, loving little boy who babbles and chatters away at home. He even has a few words now. He is very shy with anyone apart from family members and finds it next to impossible to socialize with people so he retreats into himself. He is a funny little boy with a quirky sense of humor. He loves his big brother and little sister dearly and it is wonderful to watch them interacting together, something we thought we wouldn't see for years. He also has Sensory Processing Disorder along with his autism.

HRH was diagnosed with autism at 23 months. We noticed him regressing, losing skills and speech, from about 14 months on.

Here he is on his first birthday; the top photo is on his second birthday. You can see the difference, can't you?
We had a "lightbulb moment" when he was 18 months old; I called his name and he didn't respond. That was a breathtaking, frightening moment for us, but in hindsight it was a blessing.
In Ireland we don't have early autism screening. If a child doesn't meet the normal developmental milestones, it may be picked up by age two. However, if a child meets normal developmental milestones for the first 12 to 18 months of their life, as my son did, it will often be missed and go undiagnosed until 3.5 or 4 years of age. Parents love and accept their children as they are and without guidance from our wholly untrained professionals, there is no way to catch the autism earlier.
If we had waited on our Public Health System to diagnose HRH, I can guarantee you we would still be waiting. I am an impatient woman and we forged ahead ourselves, thankfully. Because of this my son has been having intervention since 23 months old and is blossoming. He has had ABA therapy since he was diagnosed and also blocks of SLT and OT. Autistic children in Ireland are not entitled to apply for financial assistance with ABA therapy until 2.5 years of age. The comment we have most often heard over the last 16 months is "Oh, he is the youngest child we have ever worked with."
We are not entitled to Community Therapy Services (local speech and occupational therapy services) because he has autism. Community services are not for children who have a diagnosis from a specific list of disorders, but for short term assistance with development delays. HRH goes to an autism-specific service provider; it took a year to get that service. The autism services are fine for now, but if HRH goes to a mainstream school later on we will not be entitled to those services, but we won't be entitled to the Community Services either because he will still have autism. So if we work hard now, make great progress, it will come back to bite us later on. That just seems very messed up to me!
Attitudes to disability in Ireland are of the elephant in the living room variety. Everyone can see the elephant, you can't miss it, but nobody knows how to address it or speak up. There is a lack of confidence here and people feel uncomfortable in broaching the subject so people just ignore it until their own lives are touched by disability.
I have read so many blogs from so many wonderful parents around the globe and there is a theme running through all of them. People with special needs do not get anywhere near the kind of help they need. There is no looking to the future and investing in our special needs children now so that they can become valuable and contributing members of society later on. Any help that is available is mired in a sea of red tape that adds extra stress to an already tired parent. This isn't just in Ireland, this is everywhere.
One at a time we need to fight for our children and change the attitudes of those who hold the purse strings. We can do it, we have to do it. Otherwise what lies ahead for our little sweethearts?


  1. That is wonderful that she pressed on and got the services that she knew her son needed! I've worked with several childen with autism over my years as a teacher, and the earlier you start intervention, the better. Thanks for sharing this!

  2. Hi, Jen! *wavingwildly* from Texas! Thank you for visiting on this side of the big pond!

    HRH is absolutely cherubic! Your photos of him are most telling.

    "One at a time" - that is how I think it happens - for things to change - which I believe will. Despite the ongoing need for services to improve, what is available now is so much more and better than even 20 years ago. I just watched the Temple Grandin movie. So much insight is available in that fabulous movie!

    Thanks again! Barbara

  3. Love Jen...so great to see her here! So great that you fought for as early intervention as possible. I want to bite those cheeks!

  4. What a beautiful child! He's so lucky to have such a strong and beautiful mom!

  5. Hi Everyone:)

    Ellen, thank you so much for having me guest post, I am really excited about it.

    *waves* to Jillsmo, TherExtras & Lynn, lovely to see you here ladies.

    @Shannon, yes, we are truly seeing remarkable results with early intervention. HRH is an utter joy to us and makes us feel so lucky and proud to be his parents every day.

    @Felicia, thank you:)

    Lovely to be here.


  6. What a surprise to see you here Jen! You are such an inspiration to me and I am so glad to see you featured here!!!

    Lovely photos!!

  7. Awesome irish mom the trick is to be organized the masses have a better chance of loosening the purse strings then a sqeaky wheel(ONE SPECIAL NEEDS PARENT). and your right no one should have to root against thier kid. But alot of programs are based on how far the child is behind; the farther behind the more help you get. it seems to make since but when you as a parent wish for your child to do poorly so he can get the most help. it just feeels wrong in your gut. Have faith a good advocate goes a long way.

  8. Excellent post! And HRH is a sweetie-pie!

    I'm sad to hear about your battles to get services and general attitudes re disability. Yes, we must keep fighting. Thank you for sharing your story and your beautiful boy!

  9. Welcome, Jen! You are right that it is flat out wrong to hope for success through failure. I am luckier than a lot of families here because we live in a town with a Shriners' hospital and so get many services for free, but only certain diagnoses are covered there. My Shriners' PT told me we wouldn't get much from school services when she aged out of Early Intervention because Hannah is moving so well. I find it baffling that success doesn't deserve more success, but it doesn't, so we'll be going to Shriners hospital for extra services and praying they never close. You are right, we should all be pushing for more services for the underserved in our communities.

  10. Welcome Jen!! HRH is not only absolutely beautiful, but blessed to have such a dedicated mommy as well. I don't care where you come from, or what "diagnosis" your little one might have, the one thing we all have in common is a tremendous love for our kids!

  11. Good for you for sticking with things no matter how frustrating the red tape is.

    And may I add that HRH is simply one of the most delicious looking children I have ever seen.

    I seriously want to bite those cheeks.

  12. Hello Jen, missed your post here, great to see you sharing life with special needs in Ireland and another gorgeous photo of HRH xx


Thanks for sharing!

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