Zach has apparently completed three months of thezachproject and the process of applying for funding has started again, at least we think it has.
I contacted the transition team regarding this some weeks ago and eventually it seemed the wheels had started turning and there maybe just enough time BUT there was, we are told, a glitch in that somebody thought something was something else and so it was maybe not submitted to panel in time…..which means that we are once again stressed and strung out.
It has been explained to us that we will probably have to reapply for funding every six months, it is a pretty painful process to have to go through. We are at the mercy of a panel who have never met Zach, have never met or contacted the expert providers who deliver Zach’s support and have never spoken to us. The panel in their wisdom probably wonder why Zach needs what they regard as expensive support and would we are told, like us to use a cheaper provider….if the panel want to get in touch with me I would love to tell them why this wouldn’t work and how we have seen it fail time and time again in Zach’s life.
Because a person has autism and is non verbal does not mean that they should not be entitled to a good quality of life. Containment is not giving a quality of life, for instance two very nice girls used to come to support Zach, they said that they would take him for a drive and that is just what they did. They took him for drives and didn’t ever get out of the car with him because they didn’t have the necessary tools to be confident to do so. Their lack of understanding that Zach isn’t like every other person they have ever met with autism, that he is primarily Zach who has autism, not Zach who is autistic. There is a very big difference.
What would be very refreshing and incredibly astonishing is if our local authority gave thezachproject a real chance and decided that they would support what we are doing. They would review the carefully collected and graphed data that the BEAM ABA Services team collate and they would meet and talk to BEAM about what they do which is different to other local providers and then they might just think…..actually this could really help a lot of other young people with severe autism and complex needs in Hertfordshire. It is offering a bespoke and highly individualised package of care which includes the young person learning, accessing the community and also gradually having the tools to regulate their behaviour. The providers have high aspirations for their clients and they really want them to achieve the goals which they set and then when they do achieve them, they set another goal. They problem solve, adapt behaviours into something which is acceptable and good. They provide positive behaviour support, they are highly trained and they are all people who have chosen their job, rather than the job choosing them (which is quite often the case for some people who go into care work).
Hertfordshire could become trail blazers for providing top quality support for all the young people that the current available services don’t seem suitable for. And what they might find is that although it is expensive, over that young persons life time they cost less because the longer they receive the expert input the more able they become and the more likely that they will be able to remain living in their own community rather than being shipped off to some where miles from home where they are once again living a life of containment.
I am writing this as we wait to hear whether thezachproject made it to panel today and whether panel agreed to give us another six months or refused to fund Zach.
We are well aware that social services don’t have a bottomless pit of money but until there is a viable alternative, that offers the same service, with the same expert team of workers there is no option.
It doesn’t involve any direct physical harm so it’s often seen as one of the more ‘acceptable’ forms of torture. It leaves no scars, at least physical ones, and in recent years it has become one of the preferred methods of “torture lite” by regimes who claim to respect international law and human rights.
Keeping someone awake for hours or even days at a time is a highly effective way to ‘break the will’ of a prisoner, causing a whole range of undesirable ill effects from cognitive impairment, psychosis, breaking down the immune system and even causing heart defects and cardiovascular disease.
What are these paragraphs referring to? Sleep deprivation! Most of us have at some time in our lives suffered with insomnia or been kept awake by something which is happening in our lives, be it the birth of a child or a close family member being unwell or us, ourselves going through some personal trauma which keeps us awake at night.
We do expect sleepless nights when our children are young, babies and toddlers wake regularly through the night looking for food and/or reassurance. We usually give them a feed and a cuddle, maybe play some gentle music and they drop off back to sleep, plus when they are very young many of us can sleep when they sleep during the day.
I am certainly not saying it is easy when this happens, you spend days feeling like a zombie, wandering around feeling as though you are existing in a twilight zone. You go through the motions required to get to the end of the day.
Over the last week I have heard from a number of friends who have a young person who has autism who are feeling the effects of severe sleep deprivation. Their child isn’t a few months old or even a few years old they are in their late teens and early twenties and this sleep deprivation has lasted since they were born. The reason I heard from them is because they were unable to do something we had arranged or go somewhere because they just felt too exhausted.
Zach goes through long periods of not sleeping and even when he does sleep, he is a hugely restless sleeper, thrashing about, throwing covers off and bed hopping. I guess the bed hopping is a bit like hot desk-ing, nobody wakes up in the bed they started in. It is a very disorientating way to sleep, and the quality of all our sleep is very poor.
Recently I found myself in the back bedroom where there are two single beds, Zach was in one and I was in the other, having had a couple of moves earlier in the night. I had finally nodded off to sleep to be woken up by the quilt being whipped off me! Zach had obviously lost his due to his frantic sleeping and grabbed the one on the other bed.
It is difficult to plan and commit to things when you have a young person who struggles to sleep. An evening out which finishes at midnight and involves you having a few alcoholic drinks can be a massive mistake when you get woken up at 02.00am by your child who isn’t going to go back to sleep! Most parents expect their social life to resume once their children reach a certain age, most parents who have a child with autism don’t have anything which resembles a ‘normal’ social life and it is only the most loyal and best of friends who continue to invite you to social occasions despite you having accepted and not turned up for the last 19 years!
I have had sips of alcohol since Zach was born but I have never even had a whole glass of wine or a tasty gin and tonic because the idea of a hangover and sleep deprivation makes me realise staying sober is the only option. I am sure many of my old friends who haven’t seen me for a while will find this hard to believe. I was something of a party animal in my formative years, I partied long and hard and I am glad I did because I daren’t now!
The other thing parents have to do is work! People make allowances for new parents who are yawning as a result of sleep deprivation but someone who looks permanently tired, has poor health and low attendance at work for years will naturally be overlooked for the plum jobs and promotion.
Tiredness causes people to be snappy and cross about things which wouldn’t normally bother them. It causes arguments and fraught relationships and is probably a big factor in the high divorce rates of couples who have disabled children. It also affects our ability to function as a normal human being, eating well and exercising! Both of which are very important for our physical and mental health.
I do notice John and I competing for the most tired award (I’m not sure what the award actually is, it might be worth doing if it was a weeks sleep!) . We will ask one another how they slept and the answer is usually ‘not great’ followed by a brief outline of what happened to disturb vital sleep. We often then remark that we heard the other one snoring! As if to suggest that John was asleep, or I was asleep so therefore one or other of us must win the prize for the most tired! (I am quite embarrassed to be admitting to this)
For months in the summer Zach was waking at 04.00hrs, he would appear next to our bed smiling. He was usually very good humoured which meant that I tried to be but I really found it hard to be equally cheerful when all I wanted/needed was sleep. I am sure you are reading this and thinking of a variety of things which have helped you sleep and I can assure you we have tried them all.
I am back to Meletonin, a brief explanation from Wikipedia- Melatonin has shown promise in treating sleep-wake cycle disorders in children with underlying neurodevelopment difficulties.[9 and a sprinkling of lavender oil on the bedding at the moment, however all these things are only effective for a limited period of time so we know that although we are having a bit more sleep at the moment it will come to an abrupt and nasty end.
Many parents notice that when the moon is full their young person with autism sleeps even less! Many people with autism have gut problems, one of these problems being gut parasites.
The full moon causes changes in behaviour because that’s when parasites eggs hatch and that causes changes in children’s behaviors. Vets will treat animals for parasites during a full moon because it’s the best time to be the most effective. Lots of parasites hatching will cause discomfort and behaviour change in anyone. Imagine being non verbal so you can’t tell anyone what’s happening. Parasites can live anywhere from the brain to the organs to the gut.
The treatment for gut parasites is varied from strong antibiotics to black walnut and wormwood. Parasites also hate pumpkin seeds so it is worth adding these to a smoothie or a shake.
Sorry this isn’t light hearted or even about thezachproject but having received an email from a Mother of a 19 year old man who has severe autism which was written at 03.00hrs because it was the only time she got the chance, had messages from another mother who felt like a zombie as a result of nights of no sleep until 04.00hrs for a number of nights and another friend who is feeling completely unable to cope with life as a result of sleep deprivation.
Autism is an incredibly complex condition and interrupted sleep patterns are part of the condition. It does feel like torture. So this evening, as we do every evening, John and I will go to bed when Zach goes to bed! (Usually 21.00hrs!)
There is this great concept called ‘Short Breaks’ and all young people with a disability are entitled to it.
Definition of Short Breaks
“Short breaks provide opportunities for disabled children and young people to spend time away from their primary carers. These include day, evening, overnight or weekend activities and take place in the child’s own home, the home of an approved carer, a residential or community setting.
So in theory this should be pretty good all round, the young person gets to have a fun time with people who understand them and know their interests and the family get some time to recharge their batteries and kick back and chill out!
Our experience of short breaks didn’t really go to plan. I have never really liked the idea (as no parent does) of sending Zach somewhere that he is not happy to go. We have never had the luxury of a family member who took Zach overnight or even for the day so Zach has always been used to our family unit and home.
In 2007 when Zach was 10 years old there was an exciting review of disabled children’s services which led to ‘Aiming High for Disabled Children’ which aimed to transform the life chances of disabled children. There is a very long government paper if you would like to read it which sets out just how things were going to change to improve our children’s lives.
I was particularly excited that Autism and challenging behaviour featured highly on the list of priorities for the report and outcomes
The National Autistic Society said
We welcome the acknowledgement in the Short Breaks Implementation Guidance for local authorities and primary care trusts that “current short break provision is particularly inadequate for children and young people with ASD and/or behaviour that challenges”.
The guidance goes on to state that “a short breaks service should … provide fit for purpose and age appropriate provision which ensures that the following groups are not disadvantaged in accessing short breaks: children and young people with ASD. These are likely to have other impairments, such as severe learning disabilities or have behaviour, which is challenging”
However, we are concerned that despite this focus on autism in the guidance, eligibility criteria are being set which would serve to exclude children with autism, particularly high-functioning autism and Asperger syndrome, from accessing short breaks provision.
There was a five year period in which local authorities had to get the new services up and running, so giving them time to find the right expertise and locations.
The Government gave each local authority a large sum of money with which to set up additional services. Hertfordshire set up a service which they called The Hub. It is a great service and it is still running so a lasting legacy from the review. A long established charity called KIDS got the contract to run the Herts Hubs and they do a great job.
From the KIDS website please see below giving a brief outline and contact details for East and West Herts.
The KIDS East and West HUBs offer information and support for parents and carers of disabled children and young people aged 0-19 in Hertfordshire.
Any parent or carer of a child aged 0-19 with any impairment can access the HUBs. You don’t need a referral, just call or email us. You can also drop in but please call first in case we are out! Professional enquiries also welcome.
We can offer free and impartial support via phone, email and face to face (including home visits). For more information about the services and support each of these HUBs provides, click on the relevant HUB below.
T: 01923 676549 (please call before visiting, in case we are out!) or email us.
Both sites are accessible for disabled people, including accessible toilet facilities to meet the requirements of wheelchair users.
The majority of the money in East Herts was spent on a short break unit called ‘The Pines’ which the charity Action for Children had the contract for. The Pines is on the other side of Hertford so pretty close to us and I was full of hope that Zach may go there and enjoy it.
Zach duly had a referral to The Pines and although I naturally had reservations as any parent does when their child stays away from home for the first time Zach began tea visits and then had some overnights booked in.
John and I were to have our first evening out when it didn’t matter what time we got home…..we were just sitting down to eat in a rather nice Thai restaurant in town when we got a call telling us that Zach was crying, there was a long silence and I then asked ‘would you like us to come and collect him’ and they said ‘yes please’, it was 7.30pm. I pitched up, Zach started smiling and was thrilled to bits to be coming home.
This rather set a pattern and it became evident that despite Aiming High the staff at The Pines did not have the expertise needed to accommodate a young person with severe Autism and complex needs. I was very disappointed as I had really hoped that, not just for Zach and us but for all young people and families in a similar situation to us there was recognition that they and we also needed short breaks, anyway it wasn’t to be.
We did have (and still do) something called ‘direct payments’. Wikipedia describe below rather nicely what DP’s are:-
The Direct Payments scheme is a UK Government initiative in the field of Social Services that gives users money directly to pay for their own care, rather than the traditional route of a Local Government Authority providing care for them. The Cabinet Office Strategy Unit calls direct payments “the most successful public policy in the area of social care”.
Direct Payments are seen as making an important contribution to the independence, well being and quality of life of people with disabilities. When introduced, they were seen as a victory for the rights of disabled people.
Direct Payments are wonderful if you have staff, but it can be very difficult finding staff who can meet your child’s needs and also commit to the hours which you would like them to work. We have had periods of time when we have had great difficulty finding appropriate staff.
As a result of this the council decided that we would have some DP’s to pay Laura but we would have staff from an agency also.
The word agency staff to me conjures up all sorts of images and we have had most of those images on our doorstep! Some I haven’t actually allowed over the doorstep. However from an agency came a wonderful warm and caring lady called Cora whose lovely husband Daniel eventually signed up to the agency in an attempt to spend some time with his wife and they take Zach out for three Saturdays a month. Zach really enjoys his time with them, they have stipulated to the agency that they will only work with Zach and we all have a great relationship.
Over the years we have had some really fantastic staff working with Zach who we have paid with the direct payment money. Many of them I am still good friends with and have gone on to teach and work with children or adults with learning disabilities.
One of these is still working with us and is rather like part of the family. We knew Laura as her sister Amy worked for us, both sisters from a very young age had helped at a local play scheme for children with disabilities and their siblings (which is where most of our favourite staff came from)and this was where we first met the Wrangles sisters.
Laura was about 19 years old when she started spending a lot of time working with Zach. She was (and still is) a blur of energy and fun and not phased by anything, she is both strong, determined and principled. Laura did a degree in Speech and Language Therapy at Plymouth (rather a long commute) so most of the work she initially did was during the holidays. We had some mad and interesting adventures during the holidays and we all laughed a lot which I firmly believe is better than medicine!
We asked Laura to come to Freedom Family Holidays with us, the staff at the Allnatt Centre being ever accommodating gave Lou an adjoining room to ours (poor Lou :O) and we laughed all week. That was some years ago and since then we have had many adventures, been far and wide on a variety of different methods of transport and stayed in many a Premier Inn, Centre Parcs and Butlins and returned to Freedom Family holidays a number of times. Lou is very much part of the group and was missed by all this year.
Laura has planked in just about every location we have found ourselves in!
About two and a half years ago Laura and her girlfriend (now her wife! 🙂 ) April purchased a house in Stevenage, a nearby town. They have done the house up and made it a beautiful home, and in that beautiful home they have a bedroom which is Zach’s! They have books he loves, favourite things and he feels at home there.
We are incredibly lucky that April, who is a paramedic has a heart as big as Lou’s and she embraces and loves Zach too. So Zach goes to The Bangles home for his sleepovers, he has the attention of not one but two wonderful women and they always do something which is fun when he is there. Laura is not only a Speech and Language therapist she is also a fab hairdresser so Zach comes home with a trendy new style almost every time he goes.
We know just how lucky we are to have this, I would hate the idea of Zach going to some short break unit which struggled to meet his needs, where he felt sad and lonely. Sadly Aiming High for Disabled Children has long been forgotten by most and I do wonder just how many lives it changed.
Zach can still feel anxious about staying away from home but once he is there is comfortable and happy and with people who know him very well and most importantly really care about him.
This summer Laura and April got married, it was a really wonderful day. The venue was Hitchin Lavender Fields, they had a massive teepee which they decorated themselves, the ceremony was in the fields, we then had wedding cake, afternoon tea and later on dancing and even more food. I was an emotional wreck at seeing the pair of brides looking so beautiful and in love. There were so many special touches (including my marmite and cucumber sandwiches! )for the guests during the day and a huge amount of thought had gone into the planning and preparation. If Laura and April ever get tired of their chosen professions I think they could make a good living as wedding planners!
The most touching part of the day for me was that they had given the DJ a playlist for when Zach arrived, the list included his most loved tunes and when the DJ asked ‘what if someone else makes a request?’ Laura answered ‘you ignore them’. They were determined that Zach was going to be part of their special day and I was incredibly touched at the effort they made to ensure this. Zach duly responded very positively to the playlist 🙂 and it was great that he was recognised by their friends who had never met him but had heard tales of my bouncy son!
Zach eventually decided he wanted to go home and led us to the car, I went back to say my goodbyes. I could see Zach sitting in the car with John from the teepee where I was, when the next tune came on…Mambo No:5, the car door flew open and Zach leapt out of the car and came running across the field to claim it on the dance floor! A very funny moment 🙂
It was a wedding I will remember for a very long time as being an incredibly special day.
My next post will be an update on thezachproject, it is going very well and Zach is coming home tired and happy which is a great thing.