Sammy is the heartbeat of our family – everything we do centres on him. He is wonderfully kind and humorous but is also very hard work. He was diagnosed with Down’s syndrome the day after he was born and he has thyroid problems, hearing loss, sleep apnoea and ADD. When he was a baby he also had epilepsy which was often very scary.
As my life was taken up with looking after him and taking him from one appointment to the next, I had to give up my job as an office administrator.
I tried to go back once or twice over the years, but it just hasn’t been possible as the cost of trying to get someone to look after Sammy totally outweighed anything I might have earned.
He has been at Stewarts Special Education School, Palmerstown in Dublin, since he was little and they have done amazing work with him.
Luckily he was registered at a time when children like Sammy were offered support all the way through their lives. Nowadays I know when a child with special needs turns 18, it’s as if they fall off a cliff because there is no help or support available for them at all – so we have been extremely fortunate in that respect.
Sammy gets up every day at about 6am and I have to either get up at the same time or at least get down to the kitchen before him as otherwise he will have eaten two breakfasts by the time I make it downstairs.
He is also likely to leave the house and head for the nearest shop if there is something he wants and can’t find, so one of us has to be there to ensure that doesn’t happen.
The bus comes to take him to Stewarts at 8am where he will spend the day doing activities, such as lifestyle lessons, cooking and yoga. He is usually home at 4.30 and because he can’t sit still, every evening he attends group sessions of either football, dancing, basketball or bowling.
At the weekends, he has an organised club every second Saturday and Siegi also takes him to play pool so he is constantly kept busy and is always happy.
Everything revolves around Sammy’s routine and we are always on our feet. We do get respite every few weeks, which is a great break as otherwise we don’t get to do anything other than take care of him.
Mind you, I found respite very difficult when he was a child and remember dropping him off and sitting in the car crying as I felt so guilty about it and worried about entrusting my child with a stranger. However, I had no choice as we all needed a break and I had to give some time to the girls.
Nowadays, he loves it though and sees his time in respite as a holiday – so he hardly gives us a backward glance.
Financial aspect
The hardest part of being a carer is the financial aspect. I feel very strongly about the issue of medical cards and cannot understand how the Government could grant free doctors’ appointments and medical help to all children under six. Pitting this group against children with special needs didn’t make any sense at all.
The majority of young children will just suffer from the odd cough or cold which can be treated with common sense and over-the-counter medicine, whereas for people who have children with special needs, the cost is huge and relentless.
Many of these children will also need specialised equipment such as hoists which would be provided under the medical card scheme. To deny these children and those with life-threatening illnesses such as cancer the chance to have free medical care seems to be a very questionable decision.
We have always paid for our medical expenses but since Sammy was born, we have had only one wage coming in. Siegi works as a driver so is just on an ordinary salary and without a medical card we have always had to pay €50 every time Sammy needed the doctor.
The stress of money while getting to grips with his condition and coping with his epilepsy really zapped all of our energy, particularly as he always had so many different medical appointments – and they are still ongoing, so this is still an added concern.
I really believe families who are already under so much pressure with the stress of having a child with special needs should not have to cope with the added financial worries of rising medical costs.
Now that Sammy is older, things are a little easier and while he does still have hospital and GP appointments, they aren’t as frequent as they were when he was younger. However, I really feel for the families out there who are just starting out on this journey.
Hard work
I love my son with all my heart and he has been a joy to the whole family, but there is no denying that having a child with special needs is hard work.
The girls are very good and do everything to help out, both now and when they were growing up. But Siegi and I aren’t getting any younger and I worry about the future sometimes.
Sammy is so trusting and would open the door to anyone – he doesn’t see any danger in people and that in itself is very worrying. People often ask us, and other parents who have children with special needs, how we cope with our hectic lifestyle and the answer is that because you love your child, you will always get by – somehow.
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