When I decided to write this blog it was first and foremost a way of reaching out to families who may be struggling one way or another with Autism. I wanted them to realise that they were not alone and that with the right support network around them, living alongside autism can be fun as well as challenging. Secondly I wanted to tell as many people as possible about my funny, bright, gorgeous boy who makes my heart burst with pride and leaves me gasping for breath with his bear hugs.
I have had some wonderful comments and received countless emails from followers around the globe all saying how much they enjoy reading about John and that they can relate completely to the situations we find ourselves in. One lady from Australia emailed to say, and I kid you not, that John is very big down under!
I have been both delighted and moved in equal measure by how it’s all turned out. None more so than when a few weeks ago a young mum called Jayne contacted me, she reads the blog and regularly leaves comments about her children, both are autistic and both with very different needs. They sound wonderful. She thanked me for making autism sound fun even when we both know it can be anything but. I admit that I had a bit of a wobble at that as I thought I might have been coming across as a bit smug, all ‘Oooh! Look at me, I am having such a great time with John and not a worry in the world’ kind of thing.
I questioned myself about my writing style, was I being true to myself and to my reasons for writing the blog. When I voiced my concerns she reassured me that I had completely got the wrong end of the stick and that I was definitely not coming across as smug. Such a relief, thank you Jayne for calming my inner doubts.
Thanks also to Jayne, who is rapidly becoming my new BFF, I have recently had the pleasure of meeting with her family plus two others, Gill’s and Sue’s. All three families are going through the same struggles with their sons and daughters that we went through with John at the same age.
Two of the families are currently experiencing problems with Social Services as their children are approaching 18 and their futures are being discussed although nothing appropriate to their children’s needs is being offered. The other family is within a year of their son leaving school with still no concrete evidence that they will be granted the funding for their child to be placed with Wirral Autistic Society as the local authority are quibbling about funding issues. They are all stressed out, exhausted and demoralised. They also feel very much alone in their individual struggles.
Jayne and Gills families have been told by social Services that yet again WAS will not be considered as a placement for their children inspite of their numerous requests. Instead they have been shown around day centres which are totally inadequate for their children, in some cases even at the centres own admission. It would seem that once again children with autism are being placed in completely the wrong environment which can only lead to problems in the future. As far as respite goes they are being given no choice at all except for a very small unit belonging to adult services which presumably won’t cost the local authority anything. Social Services claim it will be able to fully meet their children’s needs but in all probability it will fail at the first hurdle.
As parents they are all very switched on in terms of the level of support their children require. I am amazed at how they have all coped and are still smiling even if it is through gritted teeth at times. I asked their permission to include them in this post; it’s a bit different from my usual ones. I wanted to talk about their story alongside our own struggle, to highlight the importance of needing the right support for the future of your child if he or she is to have any chance of a happy and fulfilled life.
Even more worrying is that it has been 12 years since we had to fight for John’s right to be referred to WAS which we believed to be the placement best suited to him, and yet here are three families all these years later that are going through exactly the same stresses and anxieties that we did. The reasons are all still the same, lack of funding therefore lack of provision.
When your child is diagnosed with autism you start on a journey that seems to be all uphill. It would be wrong to say that there are not good times, there are and there is lots of laughter along the way too but if you ask a parent of an autistic child what their lives are like I doubt the word ‘Fun’ is first on the list.
Every time you think you are doing ok something comes along to test you even more, maybe behaviour problems or additional health needs. Something’s not right at school or maybe you can’t even get your child to go to school. We had 2 years of struggles to get John to school and there is nothing more depressing than starting your day with a high anxiety incident which can last for an hour or sometimes even longer. Once he was on the bus I would be too exhausted and wrung out to do anything except cry. Of course you don’t really tell anyone about your troubles you just get on with it. John would then be upset and struggle to cope for the rest of the day. He started taking his frustrations out on me and would regularly attack me because it was his only way of communicating how dreadfully difficult his life was becoming and he wanted me to make it all right for him again. I wish it had been that easy.
Maybe you can’t get your child to go out of the house, or if you can then they scream all the time they are out because their senses are being assaulted by the light, the dark, the noise, the silence, the sunshine or the rain. Their need for routine can be of paramount importance to them and if something unpredictable or unplanned occurs it can leave them unable to cope, resulting in a meltdown. There will be problems with sleep, or lack of it. Some children can stay up for almost 24 hrs without any apparent adverse effects; I know this because John didn’t sleep through the night for years. Anything and everything has the potential to cause your child fear and anxiety, you are constantly running on adrenalin which is draining in the extreme. Is there any wonder that you need respite but when you ask for it you can’t always get access to it, usually when you needed it most. We were lucky when John was with children’s services as the respite centre staff were very aware of how tough life with John was becoming and they always phoned me if there was a free bed to see if I needed it for the weekend. We didn’t always take it but on occasions it saved our sanity.
You take all the challenges and heartache on your shoulders because there is no alternative. Week after week, month after month, year after year your hill gets higher with few plateaus while your burden feels heavier. No one who hasn’t experienced it can ever imagine how hard life can be. You are weak, exhausted and just when you think it can’t get any worse you are faced with ‘The Future’ Something you have probably been trying to avoid thinking about for years. Your child might have become even more challenging, they will probably be bigger and stronger than you and yet you love them more than ever because they are at their most vulnerable. Their lives and therefore your lives are about to change immeasurably.
This is where Jayne’s and the other families are right now, at the top of the hill and scared to look down, hoping upon hope that their gorgeous boys and girls will be supported as adults in an autism specific environment. Is that too much to ask when there is an award winning centre right on their doorstep, the only one in the North West?
It hasn’t always been ‘Fun’ for John or our family, there have been plenty of tears and gnashing of teeth and I have touched on some of the difficulties faced in earlier posts. I am going to tell you a bit about the struggle John’s dad and I had when at 15yrs old John was being prepared for the transition from children’s services to adult services which would take place when he reached 16. If everything went to plan your he would remain at school, as an adult until he was 19.
At that time children’s services was nestled in its jolly, primary coloured world being fed by a nice healthy budget. The schools were bright and full of laughter and still are, they were places where the staff excelled at supporting and developing our children with love and commitment. They managed to support the families too, always watchful for signs of a stressed out mum or dad. There were holiday clubs and play groups to entertain the children during school holidays.
The respite centre was fabulous, all beautifully painted and stuffed with toys and games to suit every child. There was a sensory garden, a computer and a huge soft play area. The bedrooms were all themed and a wonderful extension was built for the more challenging children who struggled to make sense of their world. A place where they could chill out if they needed to be alone.
Adult services on the other hand lurked in a murky world of drabness and peeling décor. There was far less funding available, way too many clients and too few staff. What staff they did have were buckling under mounting pressure to try to deliver what they recognised was an inadequate service to desperate and vulnerable clients and their families. Pressure was mounting and moral was rock bottom.
I was horrified at the differences between the two services and what they had to offer. You weren’t even allocated a named social worker once your child reached 16, you were just dealt with by whoever was on duty, and therefore no one really knew who you were or what your child’s needs were. In fact you were very lucky if someone even answered the phone.
The respite centre was a shock to us and I was in tears as we walked around. It was huge, noisy and the corridors were grubby. The rooms were ok but very basic. I guess it is very difficult to maintain the look of a building with very little money. In truth it was only the dedication of the staff and our very real need for a break from the stresses of everyday life that made it seem acceptable. I cried every time John went, mostly out of guilt for needing the time away from him in order to recuperate and regain some energy.
Once he became 16 he immediately had to use the adult respite centre with people years older than himself. John was never really happy there as it was too noisy and echo-ey but the staff were wonderful with him and managed to indulge him with promises of being allowed a go on the hoist which was used to lift people in and out of the bath. John loved this ‘oist’ game and it was on the top of his Christmas list that year.
The transition team from Connexions visited the school every 12 months from when John was 14 to advise us what was available for him once he left school at 19. I had earmarked Wirral Autistic Society as the place best suited to Johns needs a couple of years previous and I was adamant that was where he should go. The girl from Connexions dismissed it immediately and said it was not possible as there was a huge waiting list and that WAS operated a locked door policy. When I asked her how many children had gone on to WAS she said she didn’t know of any. I asked her where she got her information from and she said it was common knowledge but when pressed couldn’t be certain of names, more that it had always just been that way. I wasn’t convinced of any of it and refused to listen to her alternatives. We didn’t really see eye to eye over the next few years, I just repeated myself and she continued to tell me I was wasting my time.
How could finding the best placement for my son be a waste of time?
Our social worker from child services was wonderful and supported us in every way through the transitional period except whenever Wirral Autistic Society’s name cropped up, which was often. I was determined to keep that ball in the air for as long as I needed to. As Margaret Thatcher famously once said ‘The ladys not for turning’ and neither was I on this one. (I never thought I would hear myself quoting Lady T!)
Both our social worker and the transition officer from adult services (who was a social worker under a different name), admitted that they had never ever placed anyone with WAS because it had a locked door policy, whatever that meant and anyway there was an 8 year waiting list. Exactly the same information I had been given by the Connexions team. Whoever came up with that excuse must have been clutching at straws, but scarily it had worked and adults with autism were being redirected to day centres if college was deemed inappropriate.
Day centres cater for a wide range of needs and therefore in the main will not be appropriate for people with Autism. They are staffed by wonderful, dedicated people who do a great job, but the two we were shown around were clearly not able to offer John the level of support he needed if he was to progress and develop.
There was little scope for him to be supported in discovering new interests and activities and the noise level would have caused his anxieties to overwhelm him. I was more determined than ever that Wirral Autistic Society was the only place capable of meeting all of John’s needs and with the expertise to support him in all areas of his life. We were only looking for day services for John at this point but still Social Services or the SS as I like to call them were not for budging.
We were involved in a kind of Mexican standoff, we were refusing to accept the day centres, we didn’t believe that there could be an 8 year waiting list for WAS, it didn’t even make sense for goodness sake, and I felt that the transition officer, who I liked very much, could see that our reasoning made sense. I caught him nodding a couple of times when I was talking; had I spied a chink in his armour? On the other hand, the social worker from Child services, who I also liked very much, was getting increasingly nervous as she had never before dealt with anyone who politely but flatly refused to take what was on offer. After many weeks and months of bouncing back and forth with suggestions by them……all declined by us……requests by us for a meeting with WAS…..all declined by them, I said we would dispense with their assistance and speak to the people at WAS ourselves.
This baffled the social worker who had been conditioned for years by the SS into thinking WAS really did have a locked door, asked how I would go about getting in!! It made me laugh out loud, John’s dad laughed out loud too and eventually the transition officer joined in. Only our poor beleaguered social worker couldn’t see the funny side. I then tried to explain that I would just knock on the bloody door and there couldn’t possibly be a waiting list of 8 years, it wouldn’t work and was a ludicrous suggestion, but she just kept saying “But it is that long, it really is”
Eventually I struck a deal with them both, I didn’t really care whether they agreed to it or not but I wanted them to see for themselves that the SS had been scaremongering for years. My deal was…. If the social worker would ring WAS to arrange the meeting, and the transition officer would agree to come along too, and if after talking to the director of day services and having a good look for themselves at what was on offer in terms of the facilities, the support and activities, IF and it was a big IF due to their brainwashing by the SS, if they still thought it wasn’t the right placement for John then we would part as friends, I would take on the SS by myself with John’s dad as rear gunner and they would be rid of me forever. How could they refuse?
They agreed! They also said that I was cheeky and a nightmare. I thanked them for the compliments and the rest they say is history.
I am happy to say that a few of John’s friends from school also accessed the day services and I like to think that our social worker had put the word around about the excellent service being offered by Wirral Autistic Society.
They still provide an excellent service, John is who he is today because of the care and support he receives by the staff at WAS.
Besides knocking a chicken unconscious in his first week, he also learned how to drive a tractor and he can operate the trailer to tip it up too, his squeals of delight can be heard around the entire site. He mows all the lawns, knows all there is to know about the mowers and absolutely loves it. He uses the leaf blower which he finds hilarious and adores all of the staff who support him. He looks after pigs, goats, chickens, geese and goodness knows what else. He uses the gym and particularly likes the running machine. He gets his support worker on it and increases the speed when he thinks they are not looking.
He is much more independent too although he still needs one to one support and as you know he even gets to go to Belfast and back on the ‘S’ boat. He has also been a resident for the past 7 years; he loves his life at ‘Nelsons Croft’ and is happier than he has ever been.
John would not have accomplished all he has had he not been placed with WAS. Life is indeed very good for John and our family, we look forward rather than down and the only hill we encounter is the one with the mast on in Wales that John is completely potty about.
I will do everything I can to support Jayne’s, Gill’s and Sue’s family through what is proving to be yet another exhausting battle as they fight hard to secure the very best outcome for their children, just as we did for John. I have feeling that Jayne, Gill and Sue are all as cheeky and as much of a nightmare as I was!
Finally, I think I can now say that even if I never write another word, Jayne has proved to me that the blog has done what I hoped it would, by proving that she is not alone in her struggles.