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?