FEATURES
even trying to call someone in the system seemed impossible.
Inevitably the countdown of horrible experiences began. I tried to prepare my son as much as I could. We did most things while he was at school so it wouldn’t affect him in a detrimental way. He does not accept things going into boxes – they should be in their place. I visually prepared him each morning to show him things would be different when he arrived home from school in the afternoon. Luckily it worked but we did have many a meltdown and lots of tears.
We arrived in our new home which was lovely, a big garden, a nice area and lots of new places to explore – or so it would have been for a child not affected by Autism and severe learning difficulties. For us it was fraught with danger.
Our priority was to safety check everything – the back garden was just an accident waiting to happen. A waist high chain link fence to each of the neighbours offered an easy way for our son to escape, especially as one side had a swing, slide, trampoline, all the things we had but were still on the lorry.
The other side had a pond and, as my son has no sense of danger, I was very afraid of what could happen. I had to keep the doors locked and more or less stay in the sitting room with him while the front door was open and the removal men came and went with boxes and furniture.
Another issue were the windows. They had locks but we had no means to lock them and as the windows strangely opened into the rooms it was a nightmare. My son had before opened a window and sat on the upstairs window ledge dangling his feet, blissfully unaware of the danger he was in. In the end we had to tie wrap them!
The safety issues were reported but none of them held any priority with the repair system and we waited days and weeks before anyone came to sort them out, making life even more stressful.
If we could just get his bedroom sorted out with all his things to make him realise this was now where we are going to live then maybe he would accept it more easily. It didn’t work. For months he woke two or three times each night as he was unfamiliar with the new surroundings. He was so upset. At times as he didn’t understand why we were here, where our old home
www.raf-ff.org.uk
was and why we weren’t going back. Eventually though he did settle and a sleep routine started to set in for him and for us. It’s so tiring, (no wonder sleep deprivation is used as a form of torture).
It is also very difficult when my husband goes away, and now that his tour lengths have been increased to six months it will be harder for us. I have to prepare, to make schedules, you can imagine, a child that doesn’t have understanding like a normal child. Rather like an infant, daddy is there at home one minute and then he’s gone. Gone where? How long for? Is he coming back? My son is completely unable to understand what is happening.
It’s very distressing for him. I try so hard to make a schedule for each day, week and month, sometimes it works, more often than not, it doesn’t. I’m sure he is not able to fully take in or understand what’s going on. Saying that, after a few months he did settle, it was just me and him, the two Musketeers coping with each day. When my husband phoned it was of little benefit as my son has no speech and can’t talk to him. But Hubby always spoke to him so our son could at least hear his voice.
Then we get to R&R. Yes, it’s great to have hubby home and the schedule changes and my son changes! It’s wonderful to see him when he comes in the door, our boy’s face is a picture, beaming from ear to ear. (I’m sure he thinks “you old git, where the hell have you been!”) It’s hours before I get a chance to hug or kiss my husband as my boy is glued to him and follows him everywhere. My son physically pushes me out of the way and, as I know how difficult it is for him, it’s worth a £million to see him smile and be so happy again – he loves his Dad!
Trouble is, a week soon flies and no sooner have I prepared him for Dad coming home I’m doing the opposite and preparing him for going away again. How confusing, yet again. Then we are back to the tears, him searching the house each and every room, looking out the window for him, pointing to the garage, the shed, all the places he thinks Dad could be.
Once the search of the entire house is done and he has not been found then we settle back and even though it’s quiet, I know what’s around the corner for me to deal with, more tears, meltdowns, self-harm and many sleepless nights all because he doesn’t understand why Dad’s gone again so, in a way, R&R is great but from experience it’s not good in our situation.
It was at times like that when I could have done with support, I had a Point of Contact, who lasted for about two weeks, never heard head or tail of him after that. He didn’t even answer my calls and I didn’t know where else to go for help. No-one from welfare touched base with me, in fact in all the month’s hubby was away we were left on our own. I don’t think anyone even knew we existed or if they did they certainly didn’t care! I thought the support would have been better, boy what a shock I got!
Maybe it is because we are able to cope, I often think to myself I was given this life because I am one of the ones who can deal with it and fight for my son, but there are many out there who are not as strong and really do need that extra support. I have my moments when it all gets too much and I cry my tears but I do it silently. Not even my husband knows I cry.
Our life has been made very difficult for the last eight months, I have found there is nothing in place, nowhere to go, no one to turn to. We have had very difficult things to deal with and it has affected my son. I’ve lost part of my little boy and that part of him will never come back. Life shouldn’t be like this – it’s so unfair!
If only the RAF were more aware of what it is actually like for families like us. Statistics now show that 1 in 70 are now diagnosed on the Autism spectrum. More understanding would be gratefully received.
Thanks, Sue, for sharing this with us. We are aware that your parent unit is looking to set up an autism awareness day and we know of some good work done by SSAFA’s Forces Additional Needs and Disability Forum in support of families (
www.ssafa.org.uk/supportgroups).
Envoy Autumn 2011 13
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