Two weeks ago our guest blogger, Karen Merry, wrote about her experience as a special needs parent. As Karen said, parents the whole world over have different ideas on what makes a good parent. We all have our own ideas and they are often related to our own childhood and upbringing or the positive or negative role models we have had in our lives. Children like to test us, they like to push the boundaries and test our patience, there is often no clearly defined right or wrong way to manage that, different things work for different people. But I think it’s fair to say that parents of special needs children have different challenges they face on a daily basis.
Karen has five children, including her son George who has quadriplegic cerebral palsy. She also runs This Special Moment Photography with her husband Peter. I take my hat off to her. My life in comparison sounds easy, I have James, who has Wolf Hirschhorn Syndrome and Autism, and I have another son too, James’ younger brother Harry. My husband has always worked hard enabling me to be a full-time mum and carer. But it’s not about making comparisons, we are all dealt a different hand and it’s down to each of us to muddle through somehow. Some days are good and others it really does feel like we are just keeping our heads above water.
Carers in your home
Each and every family with a child with additional needs is different. Some of us are managing our children’s medical needs whereas other may be managing behavioural issues or those associated with learning disabilities and often it’s a complex combination of all of those things. Like me, Karen has had carers in her house supporting her with George. Karen spoke of the misconception that some people may have that this gives parents time off. I understand that they may think that. It’s not so much that it gives us time off as it supports us in caring for our disabled child and frees us up to spend time with our other children. This is invaluable. Our other children can often struggle with what they may see as the unfairness of the time we need to spend with our disabled child. Its important for them that they see that we prioritise them too.
Karen makes a very valid point about the feeling of lack of privacy in your own home when you have carers around. Home should be somewhere we can all feel comfortable to kick back and be ourselves without feeling like you are being watched or judged. It really is very difficult to have people who are employed to be there in your home, I too have struggled with this. There have been many times when I would very much rather not have had carers within my house but then common sense prevailed and I realised we needed to have them there. Back in April I wrote about some of the issues and difficulties related to employing agency staff in your home but how it was essential for us to be able to function as a family. Without agency staff Darryl and myself had constant broken sleep leaving us exhausted and struggling to care for James and have any quality of life. We were simply too tired to enjoy time with the boys.
Respite
Karen spoke of feeling guilty for looking forward to her son going to respite. I completely understand that. I have looked forward to James going to respite for just having the break, for not having carers in our house for a couple of days and for looking forward to doing something with Harry. But having said that I have also felt so incredibly guilty for leaving James in respite, it’s a constant tug of war with your emotions.
James started going to respite when he was about 7 or 8 years old and it really was the only way Darryl and I could do things together with Harry. I know we were very lucky to get any respite, not everyone does. James only used to go to respite for a weekend at a time, just two nights for many years. For my 40th birthday my sister, Joan, came and looked after James and Harry so Darryl and I could go on holiday alone. It wasn’t until Harry was a teenager and Joan had moved near to us that we went on holiday with Harry and left James to be cared for by Joan at our house. We went on 3 holidays with Harry and a few weekends away and I will forever be indebted to Joan for allowing us to do that. I know not everyone has that level of support and that we were very lucky. I felt less guilty about leaving James too as I knew he was secure in his own home with Joan. I’d always say ‘look after him for me’ when I left and Joan and I always cried!!
What is spontaneity?
Karen spoke of her envy of other families who are able to spontaneously go out for day trips or outings. It’s not easy to do that with a child with special needs. In Karen’s case she has to consider accessibility as George uses a wheelchair. For me it’s more about if the venue is suited to James, can he be occupied and will there be changing facilities. Often parents have to manage specific dietary requirements, enteral feeds, timings of medication etc. A day out can take a lot of planning and a lot of equipment. James has to have a soft mashed diet so I need to take food with me in case there is nothing readily available, he needs to have limited dairy too and there may not be suitable options. We have to take changing equipment; we always carry a spare gastrostomy button and clothes and so the list goes on. When you go out with a child with special needs you don’t travel lightly.
Going out without your child requires just as much planning. I’m not suggesting that parents are in the habit of leaving their children with just anyone but for us that’s definitely not the case. Darryl and I only ever went out for an evening together if either my parents or sister were with James. I could never have anyone else babysit. I’d have to ensure everything was in place for what James needed while I was out, that pump feeds were set up ready and my parents or sister were well versed in how to connect James up and start his feed and give medication if I wasn’t going to be home in time. And of course, you’re at the end of your phone always …just in case he has a seizure😕.
For those who don’t know, these things are just the briefest insight into some aspects of the daily life of a special needs parent. Each family will have their own experiences but we share a bond. We understand the demands we have in common and if we are lucky, we have our own family, friends and support network to help us through. There are also many online groups. I read the stories of other parents of special needs children online and on Facebook groups. I understand their daily struggles and I smile and share their joy when their child makes what may for some be a small achievement but for our children can be a huge milestone like saying a new word, putting on their own socks or trying a new food. It’s important to share the joy, it’s makes it all worthwhile …that and the cuddles.
