Thursday 18 September 2008

What a day....

Whirlwind. Hectic. Frantic. Frenetic. Squealing, Shrieking. Fast. Tiring. Busy. Full on. Tiresome. Embarrassing. Awkward. Heartbreaking. Uplifting. Exhausting. Physical. Relaxing. Warm. Mystifying. Hysterical. Lovely. Fun.

These are the words I'd use to describe today. But when I sit and think hard about it, they describe autism. Well, they certainly describe MY experience of autism, and a full day with James usually involves most of those feelings/experiences/emotions.

This morning we managed to get ourselves out the door by just after 830 - we're getting closer and closer to the planned departure time of 8am for when I finally go back to work! I dropped my husband at the station (feeling very much the Metroland wife!) and then dropped Bea with the childminders. On to James' new school where we had a session in the hydro pool for all the children in the new class. James has always loved swimming - well, apart from the first time I took him age 4 months where he screamed so loudly and so much that he managed to give himself a petechial rash which is usually seen in meningococcal disease. That was a pretty fitful night of sleep for me! We have been going regularly ever since, and he has really shown an interest in the water. We have our best communication when we are swimming - he'll ask for my hands, or ask to swim on my back and I feel really close to him. The past year has seen an end to our shared swimming sessions as he has started "proper" swimming classes where I sit on the side and he goes in with his teacher. It was nice to get back in the water with him, and enojoy some special time with him again. The teachers were impressed with him and hopefully we'll be able to set up a regular swimming session within his new timetable at school. I have volunteered to go and help for that class.

After that, we went up to the weekly parent support group. James ate his way through ALL the crisps and biscuits provided which was a little bit embarrassing, but then the other parents have direct experience of children with special needs, so didn't blink an eyelid! I have been toying with the idea of setting up a support group for parents with young children with special needs, and we discussed this at todays meeting. It sounds as if I'll have lots of support and interest, so I am going to write a draft proposal over the weekend. I will probably approach Kids Can Achieve so that we can apply for joint funding. I really think I can make this idea a reality and am enthused about the concept, so am determined to make it work. Watch this space!!!

I was able to buy some second hand school uniform at the support group, which James was happy to try on. I think it hit me then - he is really going to go to school. He's grown up so much recently that I find it unbelieveable that in a few weeks he'll be off on the school bus on his own at 8am and not back until 430ish. If I'm honest, I'm worried that the days are going to be too quiet!!! But I'll be brought back to earth with a bang over half term - his childminders are taking a week of leave then....

After a quick stop at home, which left enough time for me to confirm my post as a group leader for the medical student tutorial groups, we rushed off to our annual allergy review at St Mary's. James usually loves going on the tube, but was petrified today. I literally had to pick him up and carry him on, he was rigid. Once we were sitting down, he was fine, and I got on with some knitting while he stared out the window, looking completely normal. I find that so frustrating at times - he has no outward signs that he is actually quite severely disabled. I guess if people listen to me for long enough, and watch him closely enough, they'll cotton on pretty quickly that there's "something" not quite right, but I am hugely aware that his autism is a hidden disability, with no outward signs to mark him as autistic per se.

Good news from the allergy perspective - he is ready to eat nuts!!! We have a formal nut challenge with peanuts in two weeks, but are to try and get him to eat other nuts from now on. Roll on Nutella sandwiches and cherry almond slices! Of course, as he hasn't eaten nuts for 5 years, he'll no doubt refuse them point blank.... He is still on an egg free diet - well, he's allowed egg as part of a dish eg egg fried rice or in cakes. Hopefully he'll grow out of his egg allergy in time, but persistence at age 5 means it will probably be in his early teens.

Now we know what the uniform is, we need to kit James out with appropriate clothing - I have never bought black or grey up until now, so had a quick look around Oxford Street for appropriate schoolwear. He had another frozen moment at the top of the escalators - he'd been fine coming up, but was not happy about coming down. Once again, I literally had to pick him up and shove him on. I've no idea what people around thought of me.

So I'm home now, exhausted, exhilerated, acheing, happy and content. I wonder what tomorrow will bring?

3 comments:

Casdok said...

Those words descibe my son too. Wish i could still pick him up and carry him when i need too!!

The swimming sounds great. As does setting up a support group. GOod luck with that.

Anonymous said...

Hi

I discovered your blog through Cathy's My New Notebook blog. I feel for your frustration about autism being a hidden disability. My son who is in the process of being confirmed as being on the spectrum is petrified of standing up on the bus, normally we go on with him on his pushchair so it's ok but last time we had to stand he was so scared of the movement from the bus I had sit on the floor of the bus (me in a mini skirt, not the most flattering of things to sit on a bus floor with) and then hold him on my lap. Nobody offered us a seat for the majority of the journey, by the time they did we were virtually at our stop!

Andrea said...

Hi Karen
I found you through Cathy's blog as well. It's like a virtual mothers group, isn't it.
I so understand what you're saying about autism being the hidden disability. I can remember people, particularly older women, coming up to me in shops when my son was acting out and telling me I should control my child. Because obviously I was completely cool with his behaviour and needed them to point out it wasn't acceptable.
The one good thing about him getting bigger/older is that it is now obvious there's something wrong even though you can't tell what by looking at him.
Good luck with setting up a support group.