Overwhelming thoughts

I wasn't sure what to put as a title for this, so much has been happening and with J at home I've not really had any time to sit and blog - as I speak R and S are busy throwing things at each other and alternately laughing with each other and fighting and yelling! Everyday life isn't boring. With a 5 year old now shouting in my ear that I need to put his sock on like daddy does - pushed between his big toe and the next one (?!) and a hormonal 15 year old on the sofa watching repeats on tv and screeching.

This morning I was on duty as volunteer at the local family drop in centre because the manager and other volunteers were having a fund raising coffee morning at the town hall. That meant I was there at 9.15 to open up and as is usual for when a coffee morning is on I was alone for 2 hours with my thoughts. After that a friend came in then J and then a lady with a baby who amused us all with his smiles and eating his sock.

In those two hours I had time to reflect on where my life is now after the past month of confusion and what I do with my time. I think if I had to list all the everyday stuff I do I'd wear myself out.

From time to time I go to a meeting with local professionals dealing with kids with special needs. Education, health etc represented and little old me. With a meeting coming up next week it got me to thinking just how little these people who are paid to work with our kids know about our lives and how many of them realise what an impact it has on family life. I am considering sitting down and typing out exactly what they need to know about parents to pass on to other professionals when they meet a child and parent(s). I have seen a lot of the other side of how they are struggling to do their jobs as well, how so much local restructuring going on some of them have been moved to a new office in a different area of the county, taken on a new workload onto to be moved back again with a different title, different office, different manager but doing the same job! Budgets to consider, paperwork by the suitcase load and still trying to do the best they can for their patients, clients, service users or whatever some numpty in an office at the time decides they should be refer to us and our children.

Hopefully I've helped them realise the impact they have on our lives, things I have been able to pass on about what parents really think and how confusing different systems and how different departments work and how so many parents don't know who to turn to when they need help with something.

I've had some comments from local parents, something that came up very recently was that after their child was diagnosed they were basically sent away with a list of local support groups and charities to contact for help and they just felt totally lost. I remember that feeling well. I also remember how after the initial diagnosis for R I was so happy and relieved to know what was wrong with her but that was followed by falling into a black hole when the realisation that she had a lifelong condition(s) that would mean her life was going to be totally different to what we expected.

With all that to deal with the thought of ringing up some stranger at a local support group was too much to deal with. I couldn't do it, if I tried to talk to even people I knew for long about R I was on the verge of tears often. I'm going to suggest that maybe they could consider asking parents if they could pass their details on to the relevant charity or group for them to contact them directly. Even an card sent in the post, personally inviting them to an event or to drop in for a coffee rather than an impersonal printed out list would be better surely? Sometimes the little things can make a difference.

J is away for the weekend which is why I now have time to sit and type. Nice to have a bit of a break with him not being at work at the moment but missing him already and he's only been gone 2 hours! Some good news, if the GP will sign him fit to work in about 10 days there's could well be some non driving work available at the depot for him! After having spent nearly and hour on the phone earlier sorting out a claim for Income Support and Housing and Council Tax benefit it'll be nice if he can get back to work. Not sure how they expect anyone to manage without extra help on SSP (sick pay) of £70 a week!