THIS is a column I’ve thought about writing for so long but each time I chickened out. My boy Ben is now four. When Ben was a baby, myself and his Mam began noticing a few things about him.
We first noticed that he didn’t seem too bothered by loud noises and wouldn’t respond at all when we called his name. Now, on the other hand, he was a dream child in that he never cried unless he really needed something, and would usually sleep through the night. He was perfect, and as they say in the movies, a little too perfect. Public Health Nursing, who have been amazing, asked about his hearing but that was perfect. He wouldn’t respond to us calling him but the first few notes of his favourite Baby Bum rhymes and his head would spin to see it. There were no issues there, but clearly something else was going on.
As parents, we spotted it quite quickly but Ben wouldn’t be diagnosed with autism until he was three. Like everything in this country, you’ll never know how much of a struggle our health system can be until you’re inside it, fighting to get out.
Ben was referred to Early Intervention at nine months old and received fantastic support from the amazing team in the Sacred Heart Centre for two years. After that, however, it’s been one waiting list after another getting passed from pillar to post with no one on the end of the phone when we make the calls.
The fight for support services for children with additional needs is relentless, no one gets back to you until you hound them. The waiting lists are grotesquely long and the silence infuriatingly deafening. You know in horror films, when you see the damsel in distress escaping from her captor, running in the night frantically trying to find someone to listen to her, to help her… to save her. That’s a perfect visual representation of what it’s like to be a parent of a child with additional needs.
Ben’s Mam has been brilliant, taking on his care like a true crusader. Like a lot of men, I feel a bit useless, offering to help and support and doing everything and anything I can, but it’s hard to keep up with the will of a mother. Like that damsel in distress, parents of these amazing children will reach out for help and advice everywhere they can. They’ll go to social media groups and forums in the hope of finding another parent who has been through or going through the same battle. Every child is different, but you wouldn’t believe the comfort a parent will get when they see a parent of a child with similar needs to their own. It’s a lonely journey trying to get all the supports for your child and it helps when others walk with you.
I can’t say it enough, Ben is the most amazing child and we feel guilty as parents when we get upset by his lack of communication or his different perspective on the world. Ben loves books – not reading them at the moment, just touching them, feeling them, licking them, stimulating his overactive senses. We would love, even for just one day, to see and feel how Ben processes all the sensory information that the rest of us take for granted in our daily lives. It’s probably like being tuned into 40 TV channels in one sitting and you could see how that could get upsetting. It’s the not knowing that kills parents like us, and that’s where we need the support of not only the professional services, but also, the people we meet on the street, and in restaurants etc.
A few weeks ago, Ben was running around near the Cathedral, loving the freedom and taking in all the sensory information around him. He was genuinely happy. At one point he almost bumped into a woman, who gave him a dirty look which then vocalized into “what a horrible child” as she greeted her friend and they walked away. This adult woman, in her 40s, who should know better but probably never will. It took all my energy to not run after her and remind her that she was the horrible one. Ben’s sister Ellie is 10 years old and has more compassion than this woman ever will as she sees Ben on a daily basis and has been his most amazing big sister.
When Ben is in McDonald’s standing on the chair, his arms reaching out to touch things I can’t see, he often screams, and people often stare. Some will smile, because they have compassion in their hearts. Others will give a dirty look as if to say, “can you not control your child?”.
This column is just a long way of saying, please be kind and more understanding of the things you see, but don’t understand.