When you become a parent you prepare yourself to raise your children until they reach adulthood and then set them off on their journey into the big wide world. You mentally prepare yourself and dream of the day you pack them into the car with their belongings and drop them off at the university campus of their choice, you will worry that they will drink too much and not attend lectures, hope they won’t live on pot noodles and remember to ring home occasionally. But when you have a child or children with a disability the goal posts change dramatically. You hope that at 18 your child has mastered toilet training or not shouting at their coffee in Costa because it’s too hot ( while we are on that subject, I apologise to the man who witnessed Jack screaming ” ha ha f**k you , you burning bast**d ” at his coffee 2 weeks ago) Anyway I digress. I’ve been Jacks Mam for 18 years, it’s been a rollercoaster, it’s been bloody hard, it’s been fun , it’s also been completely exhausting . Jack is a complete sweetheart , he makes me proud everyday, he can also be a complete arsehole because he’s a teenager! He and Lucy argue a lot, you parents out there with more than one child will understand what I mean . It’s like sibling rivalary on steroids , he pokes her and she throws a Furby at him, he screams and I dive like a ninja in between them often getting hit, pinched or bitten in the process. Then there’s all the personal care to deal with, the medication etc , the list is endless.
Anyway, when Jack turned 18 I started to seriously think about the future , how long could I keep doing this for? Many of my friends had asked me about taking a break and I always gave a glib response about having one night off a month which was fine. But secretly I yearned for a break. I last went on holiday on August 25th 1996 , I’ve sat with friends as they discussed holiday plans and pretended that I didn’t miss holidays , I even did some press around this subject two years ago for a Carers charity. It’s also a bit of a joke among my colleagues that I never go away. One of my dreams is to attend the SLOS conference in America in two weeks,the chance to meet friends who are like family and hear the latest research, we have tried desperately to make it a reality but sadly it isn’t going to happen this year. As part of Jacks transition to adult services he was allocated a new social worker, we have been incredibly lucky that the new social worker is great , they have taken the time to get to know Jack and us as a family , to help us figure out what is important for our wellbeing and to explore ways that we could continue supporting Jack and have a life outside of caring. But I will admit when they first mentioned respite for Jack away from home I was ever so slightly mortified. I’m his Mother , I look after him and Lucy , it’s what I do. How would he cope without me? How would I cope without him? What would people think of me? Would they say I couldn’t cope ? I should add here that I have worked for and with Carers for 13 years, I plan services, write policies and arrange services for people just like me that will allow them to have a life outside of caring . I advocate that it is extremely important to look after their own wellbeing, but do I take my own advice? Do I hell.
After lots of discussion with Jacks social worker where I am sure they must have thought I was a little crazy with my million and one questions and outpouring of emotion we arranged to arrange a local respite facility. I of course had decided that I hated it before we arrived. The day of the visit I snapped at poor Ian all the way there, I had a vision of a dreadful place ( even though I really knew better) but I was pleasantly surprised. This place was amazing, the manager was a warm and friendly person, the staff had a great attitude , the facility was amazing . I left feeling much lighter and positive. Soon tea visits began, this wasn’t plain sailing as in his second visit Jack decided that I was leaving him at an internment camp or something and screamed the place down, I sobbed all the way home and stressed for the two hours that he was there. I needn’t have worried as when I went back Jack had charmed everyone and was reluctant to leave. After a few more tea visits it was time for him to stay the night.
Now , we were committed to this new stage in our lives, I was confident that Jack would have fun and be well looked after.. so , why was I gulping down the lump in my throat as I purchased new toiletries for him to go? Why did I literally sob as I washed the new red towel and pyjamas that he would take with him? And on the morning that he left why did I fall into Ian’s arms crying until I thought I would never stop?
He had only been there 30 minutes and I wanted to ring them to see how he was. I managed to last three hours before I dived on the phone. To my relief he was doing great! The staff loved him ( how could they not right?) and he was having fun. I felt guilty as I realised that bed time was a little easier with just Lucy to settle, Ian and I were sitting down at 7:30 pm, we had a conversation, we laughed, we were in bed and asleep by 9:30pm
When I rang the respite centre at 7am staff reported that he had been great, he had slept well ( which he doesn’t do at home) and was happy and calm , he went to school with a big smile on his face. Ian and I had a relaxing day at home until it was time for the kids to come home from school . They came home happy. Jack had taken the whole thing in his stride. Somewhat rested, I was ready to take over the reins again . We had all survived and actually benefitted from the experience.
I still feel a little guilty, but I keep reminding myself that you can’t pour from an empty cup . Spending a night away from home was fun for Jack , I mean when I was 18 I often stayed out and ….. well my mother reads this blog so I won’t say anymore. He needs some more independence and we need a break. So he’s booked in again for two weeks time. 😉