It has been a while since I wrote about Jay, mainly because I have been living the life of the Carer that I am! So many things have happened in the last two months, and all of them meant that I was hard at work supporting Jay and basically acquiring the help and support we needed.
For a while now, I have not relied upon Professionals for help, as I have pretty much been left to just get on with it. I have never, up until recently , needed any help as we were trained and supported for two years after Jay’s diagnosis of Low Functioning Autism and Global Development Delay. Recently, as the Summer months kicked in, and the number of flying insects increased, and the Weather became more stormy and unsettled, so did my life, through Jay’s inability to cope. I began to worry, and to worry hard! By June, my Anxiety over Jay’s behaviors got so bad I had to get help from my family support worker at the County Disabled Children’s Team. I was actually recognizing that I needed help, a thing very rare for me, as I am very independent and like to find my own way. However, by this point Jay was having very strong Meltdowns and Sensory reactions to so many elements, that I was forced to seek help. This began with me asking for a meeting with my care team, which consisted of Jay’s Care manager, and our family support worker. It was very hard for me to admit that my anxiety over these behaviors was getting to a point where I was quite irrational with fear. Fear that Jay would run away in a Meltdown, whilst out with his Carers or even with me, and that he would get lost or hurt! Now, with Autism, that, is a very real fear based on a very real possibility, as wandering is common in Autism, and in Jay’s case he was reacting to things like Bees and flies and also the sky. For example, if Jay saw the clouds coming over he would try and run away and scream and shout that he was scared and the sky was scary to him, and he would also react to noises, especially sudden ones. When he heard loud noise, he would again try to run. I was afraid that if he was on a trip with his Respite workers, and something triggered his Phobias, he would run away and end up lost. Jay has no safety awareness, no understanding of danger and has such an under developed mind, he would not know how to stay safe or get help. So he really would be vulnerable. As I poured out these fears to my support team, I even admitted to looking in to tracking devices in case the worst happened and Jay did run away.
So, even though the fears I had were very real, it took only one meeting, for the man from the Children’s team to make me see, that I was actually suffering with Anxiety over Jay. This, he said, is very common and also completely understandable as Jay was showing very aggressive and scared behavior during the Meltdowns caused by Sensory reactions to his world. Reactions so strong, that they render him incapable of rational thought or behavior. In public, he would scream and shout in a panic if a Bee came near, or if the sky was too active with lots of cloud movement. Yes, to other people these things may not be scary at all, but to my little boy, these things are very scary to him, as he has a brain that is wired differently and he sees the world in a different way. My support staff suggested that I go back to Jay’s Occupational Therapist, who works with him in School and ask her to do another Sensory Assessment. I agreed, and I gave up the idea of a Tracker there and then, as I realized that we all would keep Jay safe whilst out and about and that my fears had become irrational. Whilst I do agree my Anxiety was getting a bit too high, I feel that my reasons were very real , as Jay really is very vulnerable and his Meltdowns strong in public. So, I decided to put fears and emotion aside and focus on what I could do to help. That very day, I contacted the OT and she came out to us at home. She will be known as J.
Now, going back to when Jay was five and diagnosed, we began training in Sensory processing and Sensory Overloads and also in helping support the child in Meltdown. Yet over the next four years til now, I had let go some of the resources and equipment we had used to help Jay as it seemed that his Special School were meeting all his sensory needs with their Hydro pool and Sensory rooms. By May this year, it became obvious to us that Jay was in fact going down hill. All his old problems were back. His total intolerance for any form of noise, his fear of the weather and sky, his Sensory reactions to rain, thunder, wind and hot sun were all back and then some, as they were all worse! It seemed that Jay had gone backwards and not developed more, and that we also needed to travel back to when he was Five and we began to use methods to support him.
At this point, Jay was having around seven full on Meltdowns a week, all caused by his Sensory system reacting to stimulus such as noise and phobias. These Meltdowns were aggressive and hard to handle, and sometimes lasted all day. It was not Jay who is hard but the Autistic Meltdown is. Jay fears them. He told me so! He is begging us for help, “please Mum make this Meltdown go away.” He expressed to me that he sees the colour red when they come. He told me he feels angry. He said I am scared Mum! This is the voice of a young child of nine years old! Imagine your child saying that to you! It is utterly heart breaking, sad and gut wrenching. I get down just thinking that this is how he feels. He cannot control his actions, and he needs our help to stop it. So, my meeting with the OT was brilliant. The lady reminded me of all the ways we can support and help a child who has super high levels of Anxiety and Sensory issues, and I had forgotten that I can provide the tools Jay needs within our home. Starting with Sensory toys and equipment designed to aid and calm the child. J reminded me that I can use Deep pressure to help Jay. Deep pressure equipment can even stop the child going in to a full Meltdown. J suggested I apply to the family Fund for a grant for Sensory equipment, which I have done before for other equipment and I had forgotten I could do this! J suggested I buy some squeeze toys that Jay could take out with him to trips, which he can squeeze if a feeling of stress comes on. We bought Jay a gym ball which he cam bounce and roll on. We bought a soft beanbag for him to lie on to feel calm. We also bought Jay a bed tent, a place he can go in Meltdown to try and self regulate, which so far has been quite successful on a few occasions. We put together a Sensory kit, a basket full of Sensory toys for Jay to use if he needs to calm down, and we also got a tent to encourage Jay to go outside in his garden, as he had not set foot in it for a year due to these extreme reactions to Bees. In the meantime, I applied to the Family fund and was awarded a grant of £500 for Sensory equipment. I took three days of studying the equipment online to decide the best things for Jay to use.
I decided on a Hammock firstly, which when rocked provides a feeling of calm and weightlessness which aids recovery from Meltdowns and Anxiety. It also supports one of the lesser known senses we have, – Proprioception- the awareness of position and movement of the body, which in Developmental delay and Autism, is highly under developed. Hammocks also aid the development of the other lesser known sense, -Vestibule-which refers to balance. Both very appropriate for Jay. He literally does not know how his body works or how to control it.
Here is Jay in his new Hammock and using his squeeze toys
Jay in his Hammock, with his Squeeze toy and his stress toy on his backpack
I also bought a sensory bubble light, and for the “deep pressure” J referred to, I bought a compression vest and compression pad, both which help the child to stay regulated and calm, and also aids recovery after or during a Meltdown. Jay told me he felt safe when wearing the vest and said it felt nice. It is supposed to represent a hug and can really aid well being in the child with Autism. They work for Adults too on the Spectrum.
Here are the items I bought with Jay using them.
Jay in his Compression vest, pad and Sensory lights and toys.
The very fact that Jay needs all of this intervention just shows how severe his Autism is. Jay is at the low end of the Spectrum, therefore is severe and with his delays too he really is just like a two year old in a nine year old’s body. His mind and body are under developed in the sense of understanding but not in smartness, as he is very smart. So smart in fact, that his teacher wants him to work on more advanced English and Maths due to his abilities so this proves that if you are told your child will never read or write etc due to their Autism and Delays, think again, because Jay is living proof that Doctors can be wrong! Jay has pushed through all his boundaries , to achieve in School and prove that you can still be bright even with Developmental delay and Autism. If we separate Jay’s Sensory reactions and lack of understanding and language, from his ability to count in 3’s 5’s and 2’s up to 100 and back, and his fluent reading skills, we see the picture of the whole child, not just the Autism. Jay. like many other individuals with Autism, has skills and knowledge we cannot even begin to comprehend, and if this resource is untapped it is because people always assume they cannot learn due to their disability, when in fact, if you work hard to unlock it , their brain will switch on. We have to get through to Jay, by using all we have learned to push through the sensory boundaries which prevent him from learning or functioning in the world, and then we will be able to help him to learn and achieve. I have learned that no child can learn and retain information, when they are in the middle of a Sensory Overload or in Meltdown. Preventing and treating the Meltdowns with all of the above therapy, gives the child the best possible chance of success. Even if Jay needs caring for the rest of his life, hopefully by using strategies and known soothing therapies such as Deep pressure equipment, Jay then gets the best chance of happiness and calm.
Just to add to my long list of worries over the Summer break, we have gas works right outside our house. As soon as I learned of them, I arranged for a representative to come over to discuss how the noise and change would affect Jay and I must admit, so far they have really been respectful. They stop their digging for 330pm and do not begin til after 830am when Jay has been collected by his bus, so I believe this may go smoothly. But what the Gas staff cannot do, is take away the noise. There will be noise and it is loud and so I think the first week or so will be challenging for Jay. We will be using all of the Sensory equipment the grant provided us with, and hopefully Jay will stay as calm as possible. That is my most important job in the hols is to keep Jay as calm as possible and to support him if that fails. The Summer holidays can be very isolating for us Carers. Everyone else is totally unaware of the fact. We do not want to meet up with people because it is too hard when the child is so upset or in Meltdown, but we also feel alone and very much isolated too. Whenever I get together with family , Jay gets Sensory Overload from the busy and noise, and that means I feel stressed too, and so when it is just myself and Jay I feel a calmness that I do not have to deal with people and Jay’s issues and that I can at least focus just on him and what he needs. I shall be going out in to nature with Jay, regardless of the phobias, as there are times when the natural can calm him. He loves wild things and Animals and Butterflies and so I will use those interests along with his interest in all things hydraulic and mechanical, and of course most of our time will be spent at our local Heritage Railway where Jay is forever happy with his beloved trains nearby!
Note below my new car sticker, in my efforts to educate our public on the fact that some disabilities are invisible! Jay now has a Disabled Badge to use if he needs to, should his Meltdowns happen in public. The law now allows people with ASD and other invisible disabilities to own a blue badge and it has been a long time coming!
Happy Summer Holidays to you all xx