I try to be positive, I try to focus on the progress.
It is hard sometimes.
I feel alone.
It is the Summer holidays, the days are passing, we are surviving.
The holidays haven’t been a holiday really, we got away for a week which was great, for a week we had fun together as a family and some of the tensions eased.
We visit the same area each year, the Cairngorm National Park, it is beautiful there, we can all be ourselves, there are loads of places to go and things to do that all three children can enjoy, as a Mum nothing makes me happier than seeing my children happy and relaxed. None of us wanted to come home, my eldest two both begged us not to go home.
I feel sad that home doesn’t feel a happy place for my family.
Our week away feels like a lifetime ago. We have only been home two weeks.
It has been a case of back home and back to to the frontline.
We have spent our time juggling the needs of all three children with appointments, phone calls and meetings, couple this with the loss of most of Lachlan’s support services and very little respite I think it is fair to say we are all including Lachlan feeling the strain. This is not how I hoped we would spend the Summer.
It is two weeks on Tuesday until Lachlan starts school and due to unforeseen circumstances the plans that were in place are now a mess. We have a meeting with education this week to look at this and also how education are failing our older two children too.
I feel so much of our time is taken up fighting with diffrent departments, education, social work, health; the sad thing is we are not asking for much, is it too much to ask that your children’s individual needs are recognised and supported to allow them to reach their full potential?
I fear we are trapped endlessly going round in circles.
It all comes down to money, lack of resources, vacant staff posts, staff on long term sick leave, a childs needs not being great enough or the fact despite a child having significant needs, because they have no diagnosis their needs can be ignored.
Oh and I mustn’t forget that blaming the parents for childrens failings is a favourite of proffesionals accross the board!
I have recently began to wonder if this is it?
Is this how it is going to be?
When my family was touched by Autisim, after the initial shock, I expected things to improve, for life to settle down, but the reality is we just go from one battle to the next. Nothing is getting easier, the challenges just change.
We live in a region where there are no outside agency’s or charities that offer services, the services there are, are ridiculously overstretched.
Lachlan has made great progress in the last year so much so we are no longer using his special buggy, it hit me yeasterday that the special buggy ment people realised Lachlan was diffrent, this made people more accepting and tolerant, now when he screeches in the supermarket or just lies down and refuses to move in the middle of a shop Isle the dirty looks and smart comments from on lookers have returned, I felt so proud when we were on holiday and we coped without the buggy, do you see where I am coming from? It is one step forward, two back and it is unrelenting.
It is the same with inclusion, I think people who know us understand or are begining too and then my daughter comes home upset and angry because some local kids are calling her little brother a psyco again.
We are seen by many as scroungers because our main income comes from benefits, it is 3.30am and right now I am sitting up caring for Lachlan, we care for Lachlan 24/7, 365 days a year, we have no respite. I haven’t had a full nights sleep in over five years, my little boy needs help to do everything and constant care to keep him safe, if he were in local authority care it would cost hundreds of thousands of pounds a year to care for him and meet his needs. I can assure you the income we have we just scrape by on.
I keep hearing about all the positive changes in legislation, about each region in Scotland having a Stratagey For Autisim, about the needs of carers and Young carers being better understood and supported, you see Autisim featuring in TV shows in a positive way more and more frequently, yet none of this is making our lives or the lives of many other Autisim affected family’s I know any better.