So...I was Parent on Duty today. It wasn't too bad as mornings go, a small wrestle, a slightly larger wrangle and quite a lot of tussling but that is better than it can be when I alternate between shielding my face from the onslaught of Jboy's scrabbly hands and protecting my hair from being ripped out at the roots....so all in all it was a good morning. It is now 2.30 in the afternoon, I have about an hour before he comes home and it starts all over again and I feel as if someone has opened some taps in my toes and all the energy inside me has leaked out. This coping without respite is proving to be hard..quite a lot harder than either of us had really anticipated and makes us realise the immense value of having the respite in the first place. How did we ever manage without it??? Manage we did for the first 19 years or so of his life. How was that possible??? Well, we were younger then and he slept through the night then...and the broken night thing/early morning starts have been the straw..you know, the one that broke the camel's back. Still, we are nearly at the end of February which means we only have March and April to go (silent screaming).
I was at a mums and tots group today, as an observer. It was a group for children with special needs. Such a thing did not exist when Jboy was little and I remember sobbing as I made a swift exit from an ordinary mums and tots group, feeling as if I had some dreadful contagious disease. I did go to a support group once or twice but Jboy's needs were so complex that I just didn't fit anywhere. Still don't. This mums and tots group was very accepting and welcoming of all the children and their carers..although I have to say that there were no children like Jboy there and he would have struggled with the noise and roughness of one or two of the children, but it did at least have the facility for a quiet space with bubble tubes and other sensory marvels. I felt a bit weepy to be honest. He would have loved that room...would love it still.....my boy. My forever baby man-boy.
I talked to one of the mums who is finding the idea of her little chap going to school to be completely overwhelming and terrifying. It is pretty scary with any child going to school and someone else becoming so significant in their little life..but with a child with Otherabilities, it is doubly scary. Will my child be understood? Will my child be looked after properly? Will these (highly trained and marvellous as they are)significant others be able to keep my child from all harm? So I was able to commiserate with her and calm her, to some degree. Just knowing that you aren't the only one who feels like this can sometimes be a HUGE help. You feel so alien a lot of the time, when you have a child with other abilities, that meeting someone else who feels similarly is such a relief. I hope I helped to relieve her a little today.
The circle of life goes on, unrelentingly and I now have about 40 minutes before Jboy comes home so if you will excuse me, I shall have a quiet cup of tea. By. Myself!!!