Life before and after Diagnosis-Support and how to acquire it!

 

Jay is generally a happy child! If all is right in his world he remains calm and contented in his home and the surrounding areas! However , this has only been achieved by the many ways in which we and others support him, and that takes us back to way before he was diagnosed and the chaos our life was with the onset of Jay’s Autism.

 

Trust me, we cannot achieve a relatively calm life with Autism if we do not receive help in some form. Even if it is just surfing the web or reading a book, we are still being supported and educated. The level of support we can receive for the child and the family depends on many factors. Where you live, your Local Authority’s generosity, charity support availability and outside family support, plus the severity of the child’s condition, all contribute to the help a family may get.

Before Jay was fully diagnosed in 2015 at five, we had a few hours one to one in Jay’s reception class. This stayed the same after diagnosis to begin with, until the school requested an Education and Healthcare plan or EHCP from the Local Authority. It was not until Year one , that this was granted and suddenly it was totally different! The School now had the money to provide a full time one to one, although I was amused when the County Hall lady sneakily suggested we did not have to spend our allocated budget on a one to one! I was not to be tricked-I was going for the one to one.

We also received an invitation to attend Parent training for Autism-our County council called it Cygnet Training.

Outside of school life I had already been given the contact of a local Charity, who provide Respite, support and help to the families of my area. It was this person to whom I first admitted that things were getting difficult with Jay’s condition. The Care manager informed me that for Respite care I would need to self-refer to the County Council’s Social Services Disabled section for an assessment of need which would be completely personal to our situation. It was with slight trepidation, that I picked up the phone one day after several meltdowns from Jay, and made the call that would change everything!

We met with a lovely lady who was a Social worker for the Disabled Services Department from the council and from the start she made me feel comfortable with the process of assessment. The assessment not only  took into account Jay’s needs, but also the needs of my two older teenagers, myself and my husband! She said that the whole family matter when it comes to accessing support . She explained that a Parent who has time away to breathe and to rest comes back doubly strong to handle whatever  Autism throws our way, therefore the child is cared for better. It acknowledges, that what we do is different from normal parenting! We are not just Mums and Dads, we are Carers! And Carers work 24 hours a day! So to keep children and families safe from over load and too much stress, which can really affect your health and the child’s, they provide budgets for families to either use to have time away which is called’ Short breaks’ or to refer on to the Disabled Children’s Team who provide long term year round support. This is mainly for severe cases and we qualified. Jay’s condition had become more complex when he turned six, with full blown severe OCD (Obsessive Compulsive Disorder traits) kicking in, high end constant Anxiety and severe life debilitating Phobias that completely ran our lives and his. So, we received a budget from the County Council, to use for Respite provided by the Charity group  I mentioned earlier, to look after Jay at times, either in the home or out on trips organised by the group. This was all funded by my awarded Budget. This is the way it is- these budgets can be life savers, and the biggest event not long after we received this, was a development in my own health which left me with a debilitating health condition which affected my mobility, and caused constant chronic pain and fatigue. I only mention this because I now required help for more reasons than before as I was so ill – and required rest every day to prevent awful flare ups happening that meant I could hardly look after me let alone Jay. So, that phone call I made that day to self -refer was obviously meant to be. The support we have received helps me, but most importantly , it enables Jay to safely explore the world around him with other people as well as us. You see, before this, Jay would meltdown in every single place we took him to, due to his Phobias, OCD and Anxiety, meaning distress for him and my other children too, and it became impossible for us to go out without extreme reactions from Jay. The reason the respite supports Jay is because when he goes out with the charity he does not react in the same way! Just like in School, he ‘holds it together’ for them, only to meltdown on his return to us. Therefore, Jay is able to see the world calmly and without reactions. We are his ‘safe people’ and for us, he would go in to a Meltdown, yet for them he would not. Therefore he was getting experiences he would not have got with us. We have to understand here the effect of Delayed Processing.  Jay would go out with us and react immediately or later, yet for the Respite workers, he forgets that and processes things in the day later on. These children, are often in distress in the outside world, and trips with Parents are often full of Anxiety and Meltdown. These children require someone other than their Parents to show them the world.

Let me tell you something here!

To actually allow your precious child to leave you to go on a trip with someone else is very hard-and for those of us like me, that adore their children and prefer to care for them ourselves, there is a certain amount of bravery and selflessness that enables us to put that child’s needs before our own. For reasons that are hard to swallow, my son needs to be without me at times in order to function outdoors. With me, he would always meltdown- I was the ‘safe person’ and therefore I have had to let go of the feelings that come with the fact, that my boy can not cope or stop going into meltdown when he is with me, but does stay calm for others who he has to care for him through Respite care. It is similar with School. The Delayed Effect is actually being studied now and certain Professionals are being made aware of it. It is what makes our Special Children hold it together in School or with Respite workers and then eventually let it all out to us the ‘safe people’

If you decide to progress on to more formal means of support such as County Council SEN budgets, know that you are doing it for more than just a break! Of course it is a break and that is nice, however the real reasons go far beyond that. The service is called Prevention because looking after a child with severe Special Needs is stressful and  tiring! Sometimes people are going without sleep due to their children not sleeping which is common in Autism especially and are exhausted. An exhausted Parent is not much use to any child and these children need help, and sometimes that help I am afraid needs to come from Professionals, and letting them in to your home and life is hard at first, but just like everything else you soon adapt and one day you may say “what did we do without this amazing support?” I can honestly say Jay is so much happier when he has been to a Sensory room or a hydro pool with his charity than if he was home all day consumed in the Anxiety, OCD, and Phobias that go with his condition which is : Low-functioning Autism and Global Development Delay.

Please, never , ever allow any other Parent to shame you for accepting help. If they do not want it that is fine, but many parents of kids with SEN admit to having high stress levels, lack of sleep, tiredness which can be sometimes debilitating, and they need a break!! Don’t ever feel bad for being human! We are only human and its blooming hard to care 24 hours a day every day for a child with severe conditions and a break is good for both you and them!

We love our beautiful Special Children! I love my Jay-he is wonderful, special , unique, and fills our life with happiness-we just need some help sometimes!

 

 

Next Time: Low end to High end – Differences and Similarities -Jay’s Two Year Old mind in his Eight year Old Body!

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