Remember those lovely but tiring days looking after your young baby? You lived for the smiles, the progress, the joyous moments, and enjoyed every precious second, while looking forward to the day when your child would not need you quite so much! Now imagine your baby weighs eight stone (or more) and will always need you to do almost everything for her. Caring for my daughter B is like that in many ways, even though she is also grown up. Catering to her needs is a full time job, but like most adults, it is not my only job, and so all the cutbacks to summer services for special needs have meant that by the beginning of August I am usually exhausted and overwhelmed. Not so this summer.
How did I manage it?
1. I made a plan
Normally I live from day to day and rarely know what’s happening next week. But for this summer I made an extra effort. I had a calendar of events I wanted to go to with my daughter, and a list of friends I to meet together. Plus the Rainbow Junior Arch Club summer camp.
2. Being prepared
Going out with a severely disabled young adult is not so different to leaving the house with a toddler. There are last minute toilet requests, bags to be packed with enough stuff for a short holiday, as well as a quick check on the venue to see if it will work. Since there are only three changing places in Ireland, toiletting is difficult or impossible while we’re out, and we often have to cut short outings to get home. I usually need to bring a ‘packed lunch’ of mashed potato as few venues have the kind of hot food that my daughter can eat, apart from baby bowls, and I feel embarrassed asking for one for an adult! Obviously I have to check for basic wheelchair accessibility too. Eventually I hope to get a specially converted camper van that means I can bring all the equipment B needs with me. Something like this. Because even if there is a changing place in every shopping centre, there lots of other places that will not have them, including private homes.
3. Enjoying things together
One of my friends remarked on this, and it’s something I’ve tried to achieve with all three of my children. Sometimes I’ve had to learn to like (or tolerate!) activities that my children enjoy, and sometimes I’ve been able to convert them to my interests. Luckily B and I are both sociable, and enjoy music and busy places with lots going on. We went swimming and bowling for her, but we both enjoyed so many other things, including jogging races pushing her buggy, birthday parties, shopping, and music festivals.
4. Meeting your tribe
All my friends are great around my daughter, but sometimes it’s easier to relax around other special needs parents and their children. Because we all get it, no-one is ever bothered by what a child does or what they need. It’s just the way it is.
5. A wrap around service
This was the biggie this summer. This is what made all the difference. B’s fabulous two year Adult Transition Programme ran through most of July and August. It meant that I was able to give time and attention to my other children while they off. It meant that I didn’t have to give up any hope of keeping fit during the summer months. And it meant that when B was with me, I had the time, energy and enthusiasm to make sure she enjoyed every second.
You know what that means?
It means that I will not be accepting the HSE’s New Progressing Disability Model that shoves everyone with disabilities into the community. For my sanity and for her well-being, I am going to fight for a decent day programme for her .
That way we should both get the ‘good life’ we deserve.