Jay’s Lullaby

 

This morning I was washing the dishes when in to my mind came the words of a song.

It is not just any song. I wrote it.  I have written a few songs in my time mainly with Guitar, but this one was different, as it was about Jay, and his struggle these Summer hols.  I have spent weeks, supporting Jay through the constant noise of the Summer. It began with the Gas works outside and 7 weeks later they are still here, and now Jay has been affected so badly that any noise is inducing sensory overload leading to full blown Meltdown every single day and real distress for poor Jay.

I know in my heart I am doing the best I can do for Jay, and looking back on the holidays, I would not change any way that I handled the difficult times.  Yes, I have daily help from my brilliant Respite team, and they have saved Jay time over by removing him from the stress and taking him to places such as Hydrotherapy and Sensory rooms, god they have been a god send , and I have never regretted going to children and young peoples services to make this happen.  To explain this, if your child meets your county hall’s criteria for respite, and your family circumstances do too then you receive a budget from them, to pay for Respite, and in our case Jay has low functioning Autism with Global development delay  and needs intervention outside his own people. I also have a chronic pain condition which is why we get the daily help. Without this service I cannot imagine where we would be! It is a vital service for special families and it is designed to help the child and prevent Carer Fatigue.

This morning when the noise started again, plus a somebody in the next street, who has decided to use a stone cutter every single day for 2 weeks grrr ,I decided to bring in our Guinea pigs for Jay to cuddle. It did help to settle him, and took his mind off the noise. Yet, he can still hear it even through his ear defenders and I cannot take him out because every where I take him has noise and wasps and people and dogs, and so we just feel trapped at home. This is when Carer isolation kicks in.   It is very lonely. If you have a friend or family member in this situation I beg you to consider whether they are okay.  They could feel down and depressed, or have anxiety because things are getting worse or too stressful, and the biggest threat to their health is constant stress.  They may just appreciate you taking the child for an hour or so to give them a rest. Or you could come and see them and have a drink with them-just having a chat over coffee can lighten the load they bear. Just knowing someone cares, and is thinking of real ways they can help is enough to eliminate the chronic loneliness a Carer feels.  With children who have severe disability like Jay, it can literally be a life saver to have respite, but please don’t take for granted that that is all the child and Carer needs. They need their family and friends too. Too often others are out and about having trips with their children, going to wonderful exciting places, whilst the Carer is literally trapped because if they go to these places it becomes an absolute nightmare as the child breaks down in to meltdown and everyone stares and judges the child and them. Dealing with Meltdown is a very emotional physically demanding thing. The child is incapable of regulating. This is because of the disability they have NOT behaviour based! It is physically and emotionally exhausting for the child and parent, and so, whilst you’re having your holiday fun, remember to remember your friend or family member who is Caring for the Disabled child and find a way to include them. Even if this means sacrificing a trip or two to be with them instead, it makes all the difference to them and is a good deed for you.  In my personal circumstances, it is worse as I cannot go out alone with Jay due to mobility problems linked to pain fatigue and stiffness and so I am really trapped. I am naturally a sunny person who gets excited about Stars in the night sky, nature and the Sun and Moon, so I make mine and Jay’s lives at home as lovely as I can. However, if you wish to find out the truth, I get anxious and constantly worried because I cannot take part or go out with Jay, but that does not mean I don’t wish to I just cant.. No! It is hard being alone all Holidays except for my workers, and this hols every day has been hard because of the noise. I have tried to explain to friends that I cannot do play dates due to the extremity of Jay’s sensory reactions, which makes it impossible to go to outdoor places or indoor for that matter, but that does not mean I do not want to see people at home. I would love to. Being a Carer , of anybody, be it a child or adult is incredibly draining. I am not going sit here and lie to you. It is really hard! I consider myself a strong woman who can handle this but even I have reached a limit these Holidays mentally. I never ever take this out on Jay. He is my light and my joy-it is not Jay I am distressed at, it is the condition. My boy exists outside of his condition and his good soul shines through the Autism and comes out and keeps me going.  He remains the light of our lives and a beacon of all that is innocent and sweet and young, and the condition may rule the roost, but Jay is the centre of all we do and I will always love being his Mum.  Being Jay’s Carer is separate to being his Mum. Being his Mum is reading stories and preparing his meals etc , but being his Carer is guiding a child who is 2 years old developmentally in a 9 year old body, and I do not know if he will ever develop more. Being a Carer is protecting him on reins at 9 years old and pushing him in a SEN buggy because he cannot walk in the noisy busy loud world he cannot handle being out in. It is getting his needs met in School and attending Care plan reviews and OT appointments and clinical Physiologists, and it is caring for his toliet needs since he has no idea how to self care. That will probably always be the case. This is a very different role than being a Mum.

So, back to this morning, and the song. I wrote this song in 15 minutes in my head. In 30 minutes I had added chords to it and a key. By 40 minutes I sat Jay down and asked him to listen to my song. A song that will help him to feel more safe and secure in this world and hopefully the melody will stay in his head. The other day, Jay sang a song to me and I realized he could sing. He has never sung for us, or at School plays, in fact he usually cries saying he doesn’t like the noise, but for my song he sat quietly listening to my voice as I sang the words of the song quietly to him.

I hope you all like it.

  Jay’s Lullaby

I know life gets you down.

and I see you cant get around,

to a place where you can fly,

in peace and joy to find your lullaby!

Chorus

So, I’ll form a bridge, to the other side,

of fear and doubt, to your lullaby

will calm your soul ’til you find release

stay by your side,’till you feel free!

 

We’re together now, riding out the storm.

All that noise, I will drown out for you,

take your mind, to a calmer place.

Where you can go,with that smile upon your face!

Chorus

So, I’ll form a bridge, to another side,

of fear and doubt, to your lullaby.

Will calm your soul ’til you find release,

stay by your side ’til you feel free

by your side ’til you are free!

Copyright L Wardell 30th August 2019

 

 

The very bad day at the office-For Autism Carers pushing through stressful days -coping in the Summer holidays!

When events which bring stress, come one after the other, we can become very overwhelmed very quickly. For Autism Parents we are the Carers devoted to keeping our Special children calm during the long Summer holidays. We are often forgotten, and left alone and isolated whilst everyone else goes on trips and holidays and days out. I know what it is like to have holidays with neuro-typical kids as I have two myself who are now grown up so I know my life with Jay is not normal.  Jay has so many challenges which I guess he does overcome each day, but most of the time it is I the Carer who spends each day just trying to keep up.

Then, you get those days! Those days when you just cannot take anymore and today was one of these days for me! It began yesterday when at 3pm our electricity went out. Now to regular people this is inconvenient and hard to deal with, but to a child like Jay, the fact that his television and computer had gone off results in full blown meltdown because , you see, his brain development has not gone beyond a toddler’s, therefore he does not know why it has happened. His computer is his comfort safe place where he can be free of the world and constant Anxiety, and on the tv, Cbeebies gives him structure and routine. My other two were out bike riding in the holidays and nature walking with me, but for Jay those things mean being in the outside world which is fraught with the sensory noises and sights he cannot handle and so he prefers his safe place which is home. So, when the power goes off unexpected, he has to deal with the sudden change and the fact his trusted technology has failed him and is no longer there to soothe him.  He is quite frankly, devastated, and so follows the meltdown as he cannot regulate like we can!

Today, 26th of July, Jay and I had set off to town to go to the bakery and to the railway station. We went to the shop fine, and Jay even passed two dogs okay, but as we were near the road, a wasp flew near Jay. One minute he was fine, the next he was in total panic, screaming and shouting and trying to run away but the road was right there. I struggled to hold him! Of course I did hold him, but in those scary minutes with a strong meltdown happening before my eyes, I managed to get back control of Jay and I had to be very firm. I never get cross. It never helps to shout or get angry. It simply devastates them as they know they are angry and upset but they cannot self regulate so trying to make them, by force will never work. I spoke firmly and clearly, ignoring the stares and looks and crowd. They are all invisible to me in every day life, I have learned to switch off from all people, it is the only way to keep sanity trust me!  Luckily I had Jay’s blue badge in the car and this just proves why we have been allowed to apply for our Autistic children, as they need the car nearby in case of a full blown shut down such as the one Jay had today!

As I took Jay to see the train at the crossing nearby in the car, I thought about what had happened and if there was a way I could’ve handled it better but my common sense told me I did the best I could do in a very difficult situation.  My agenda could not have been clearer-keep him safe! I did that-I saved him just like I have saved him time and time again! That is my job!

At 1230pm we returned home, and after a chat with Jay’s Care manager on the phone, I came back to Jay to find him in another Meltdown and my Daughter, who was with him tells me the Electricity had gone off again. Oh my days, I could not believe this day. It was getting slowly worse driving along at a high speed, just out to make life as difficult for Jay and I as possible. It then came back on then went off again. Jay was inconsolable and no matter how much I tried to explain what was happening he just was incapable of comprehending it. We found out, a massive power cut had happened 17 miles away with 80000 homes without power and we were being affected by it. So basically we do not know when or whether it will happen again. Jay calmed down and we went to get him a SEN buggy we were able to borrow.  We got home from collecting it and the heavens opened and yes it began to Thunder! Another Meltdown trigger! It was literally like one trigger after another for Jay today.  I can just imagine what some Neuro-typical people who do not understand Autism, are saying at this point! Whats the big deal this is so over the top! No, it is not to Jay. These things are very scary to him. He fears them like a person who fears spiders. His Phobias control his life and our life and every single trigger is normal to other people! To us ,these events mean we see a terrified child who hears and feels pressure from Thunder, has loads of triggers to his Meltdowns, and shuts down in an Autistic Meltdown that can literally last hours and can put his very life in danger! There is absolutely nothing normal about that! It is terrifying. It is overwhelming! If you do not have control of the young person ,you will lose them and they can get hurt or worse! Do any normal Parents even understand this? All they do is stare and judge and criticize. They have absolutely no idea. I would not mind that, if they left us alone but they do not, and for this reason they mean less than nothing to me. I do not care about normal Parents that judge us SEN Parents and neither should anyone of us Carers because WE KNOW! We know what it is like to not know what the day will bring. To not know when out and about, whether the child will completely breakdown . Or worse, run away or get hurt. This is life to us. We live it every single day! The Summer holidays are so very hard for us, and lately I have been managing to take Jay out for only 1 hour a day! 1 hour! in 12. He cannot cope any longer than this. He will cope for 5 hours when he goes out with his Carers from a local kids charity who provide our Respite care, but with his ” safe people” ie ,us, he cannot because he shows the real feelings to us. He trusts us the most! He can truly be himself with us and that includes all his issues.  Not everyone can get full year round support like we do,  and because of that, I give a shout out right now to all the Parents out there whose children have SEN and say you are bloody WARRIORS!! We all are!  We need to pat ourselves on the back when we have a good day, and breathe and reboot when we have a bad one.

Today was a bad day! It was caused by elements beyond our control.  We can’t have control and that is the hardest thing because in Jay’s Autism Universe, the normal things , the mundane things and the regular elements to life that we all take for granted and don’t worry about, are the very things that challenge and bring down a young boy of nine who sees the world so very differently!  At least for now, calm resolves in our home as Jay plays his favourite game ‘naughty chick Percy’  (his creation title and all) Me? I am going to go to bed early and re charge my inner battery in readiness for another day with our gorgeous boy. I really hope it is a good one! And for everyone else in the same situation as us i wish you well xx

In his safe SEN Buggy with safety harness and at home happy and calm with a great sense of fun!

Jay’s Autism World-going back to basics and preparing for the Summer hols.

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

 

 

Jay and the Magnets, Diesels, and living with Pica and Sensory issues.

The best part about having a child with Autism, has got to be the interests and obsessions they have. In the nine years Jay has been in our lives, I have found out so much about so many different things he has been interested in. These interests are unique in a child with Autism, in that they take over every thing and the child becomes fixated and obsessed with that one special interest. Often to the exclusion of everything else. The child focuses and concentrates for often hours at a time, often forgetting to eat, sleep or go to the toliet, as they actively learn all they can about their chosen subject.

For Jay, at the moment, his special interest is Magnetism and Hydraulics. Diesel trains are high on the list of interest, with Jay finding out all he can on them and how they work. Jay was delighted to discover that there are magnetic trains out there called Maglevs and he incorporates all he discovers in his play. The type of Autism Jay has means he has significant delays yet he can learn as much as he can read about things that spark his interests. He reads up on these things, yet in his play he will play like a two year old or three year old would. He recently began to collect toy Diesel trains and would give them names and characters, and would ask me over and over again to tell him stories about each character. Jay watches online videos of Diesels and will talk at length about the parts of the trains. He loves to use the word Hydraulic and Magnetic and discusses it with me all day.

So, as I always do, I began to think of ways I could bring this interest to life for Jay and also teach him the Science behind these words. So, I asked my neighbour and friend, if he had a real magnet, which he did. We brought it to Jay to show him how it worked. We used a wooden board and put the magnet under it. We then asked Jay to put his Die cast metal train on the board and watch what happens. The train moved around the board as if by magic, as the magnet did its job and Jay was fascinated and thrilled. I explained that this was happening because the train is made of metal and the magnet was making it move because the of the metal it was made of. We then let Jay experiment with the Magnet keeping an eye on him for safety as his understanding is at three years old developmentally. I took some photos of Jay experimenting with the Magnet as he made the connection with the metal, and chose to put the Magnet on his crane and pick up a metal tin lid. I really believe in letting children use items that help them make connections and help them to engage in active learning, making discoveries and coming to conclusions themselves and not always guided by the Adult.

Here is Jay using his Magnet to further understand the properties of it and how it can be used.

 

I just love watching my boy make exciting discoveries and learning about his world, and I always have encouraged him to find things out that interest him. Last Winter, his life long interest in Space, was brought to life by making a Solar System for his room. There was not a lot i did not know about Space at that point. And who can forget his interest in all things Chicken?

Jay’s life long interests such as Trains and Spiders and Space never change, but it is always lovely when a new interest arrives. It can be triggered by a trip,or a book or something he sees online yet nether the less it always engulfs and enthralls him, so it is very easy as his Mum to get the same level of enjoyment out of these interests, and I am the type of person who loves to be always learning new things. I have shared my life long passion for Nature with Jay, showing him the natural world and encouraging him to learn the names of all the mini beasts, Birds, Animals and flowers, and so in return it is lovely to share his interests and obsessions too. They are definitely obsessive in Autism. But that’s okay -I understand Jay and I know the interest will always take over him, but as long as he is happy and learning Iam fine with that.

On a different note, something that Jay did a lot when he was in Pre-school, has come back to haunt me.  Jay at three, indulged in a sensory experience called Pica. This is common in some children with Autism, and involves the eating of inappropriate things to fufill a Sensory need or behavioural need.  It can also happen when the child has little or no understanding of what is edible and what is not, which we would expect a young toddler to do, as they do not understand when something they want to put in their mouth is not edible or safe. Because Autism at the low end of the Spectrum is often coupled with Development Delay, this means a child of nine can still not know if something is safe to put in their mouth and Jay certainly still does not. At three years old Jay ‘s favourite inappropriate item was leaves from a Buddleia. He was at Pre-school with a 1 to 1 yet he still managed to get hold of the leaves, and would put them straight to his mouth. Of course his 1 to 1 always intervened, but it was obvious that Jay was Sensory Seeking and would chose many things to put in his mouth, most of which were not food. Now , at Nine, he is beginning to seek sensory input from items that are not food again. Yesterday I came in to our lounge to see him with masking tape in his mouth. I said no lets take it out we don’t eat that Jay, but he did get very upset as if he thinks he has done wrong he gets so distressed he often cries.  When Jay plays I have noticed he has begun to pick up items and put them on his lips and tongue. He has also started to lay on the floor and move back and forth on the soft rug. Our Care Manager believes it is time for Jay to have another Sensory Assessment as the last one he had at 5.  Then, it was found that Jay is both a Sensory seeker and a Sensory Avoider. So, with Auditory and vVsual stimuli he avoids, by putting his hands over his ears and eyes to avoid some sound or sight he cannot cope with, he will scream and shout to make it go away and even with Ear defenders he does this. With touch and smell he avoids sensations too, but with other senses such as taste he is a Sensory Seeker, so he actively seeks these sensations out. It all goes back to people with Autism having a scrambled, messed up Sensory System. Our Care Manager thinks that all these issues we are having with Jay reacting to Weather and to Bees and Flies etc , is due to his Sensory System not being able to process information as a Neurotically developed person would. It has been suggested that a weighted vest worn over his clothes may help Jay regulate his Sensory System better and result in less Meltdowns and Sensory Overloads happening. We also were taught a ‘Brushing ‘technique where you use a surgical brush on the child’s arms and legs for 5 to 10  minutes twice a day, to again regulate their system and calm them. We did this for a year with Jay when he was in Year 1 and i believe it may be time to do it again, as Jay clearly is not coping and is having between 10 and 12 Meltdowns or Sensory Overloads a week at the moment, and so Iagree it is time for another Sensory Assessment with an Occupational therapist.  This is set for the holiday in Half term so I hope we can help Jay cope better with his messed up Sensory System. In the meant time I have to watch Jay all the time and I never leave him unsupervised due to the Pica (inappropriate eating) and the sudden Sensory Meltdowns he has. It is quite basically like having a two year old and is a challenge, but we do it and this is one of the reasons we are not just Parents we are Carers. We must keep the child safe!

For now, I am enjoying learning all about Hydraulics and Magnets and that will do just well for the moment!

 

Autism Holidays- Why I never tell the truth about them!!

 

 

Three quarters of the way through the Easter break and to say the least my emotions have had to be kept in check this week!

Have any of my readers ever had the experience of smiling sweetly at a family member or friend or even the staff that work with your child, as they ask you the ultimate holiday question:  Have you had a nice holiday?

Only Parents of children with Autism will understand that for our Special children, the holidays are like sugar and spice! They are either filled with days of sweetness, happiness and wonder, or, they are filled with spicy hard to digest days for both Parent and Child. Children with Autism struggle with the Holidays. It is not that they do not want to be at home, actually their home is often where they are most comfortable, it is that their day changes from routine, to care free days with no pattern or design and this can throw them for a loop.

In Jay’s case, all his issues are made worse by this constant transitioning from term to holiday. Lately his Phobias have got worse again with the appearance of winged beasts in his space and the presence of a huge amount of tourists in our town with their many dogs. Lots of people with dogs are very kind to us, picking up their dogs or popping them on leads as they can clearly see Jay is scared. They see his behaviour and the Ear defenders and they put two and two together and most people are lovely. Some, are not. One woman, when we asked her nicely to move her dog away from Jay told us where to go. Moving on , yes we are having a hard time out and about with Jay at the moment. He is also stressed in the home too. He will go in to Meltdown from something on his favourite channel or on his computer, however these cannot be switched off, oh no, they have to stay on. I think it is because he believes they are broken when they are switched off. It devastates him and so they stay on.  All Jay’s reactions to things are driven by Sensory Overload and for Jay there are triggers everywhere!

Laughing out loud as I write this I refer back to the smiling sweetly at people. Everyone says to me ” are you enjoying the hols? Did you enjoy the hols or Christmas or Easter or Jay’s Birthday etc etc?  Well, quite honestly if I were to tell the truth they would probably judge me and call me a bad mum. The truth is, what these people cannot seem to understand and just do not get, is that for us the Holidays and special occasions are really hard. When we say this we are not being negative. It is the truth. On Jay’s birthday we took him to a Sealife Centre, and to the public who follow us I said yes he had a lovely birthday he loved it. That is actually a lie. He did not love it because half way through a Bee flew at him and ruined it and he was Anxious and in Meltdown after that so we had to leave! On Christmas day he was overwhelmed and suffered Sensory Overload. At Easter, he had a great first week then the four day weekend he was in Meltdown and Anxiety and OCD and Phobias crept in again, causing our little man real distress and us because seeing him like this is the hardest thing.

Laughing out loud again- because when my family and friends and staff ask me if we had a nice holiday I will again smile sweetly and say yes we had a lovely time! It feels false. It feels like I am not saying the truth because I don’t want to upset people or that they will judge me. The lies we tell just are to please people and to tell them exactly what they wish to here. Life is simply not like this. It is not always happy children on holiday , celebrating their birthday or a special occasion. For us, these events often mean the hardest days we ever have in our roles as Carers. Believe me I want it to be different, in that I wish I could be honest with everyone, but at the end of the day, some of the time off is good and happy so one must not be too negative. Laughing aloud again, as I sit here writing this , having calmed my son three times in an hour before he went off with his Respite worker. I even find myself lying to my Husband when he gets home because I do not want to bring him down. I say all is well and I am fine, when really I have been shouted at and told to go away and have had to see Jay through a Meltdown and I am completely shattered through that, but  I force a smile and say all ok how was your day?

True I am using a daily schedule to support Jay so that he knows exactly what he is doing each day, and this gives a sense of routine but it is not the same as the School routine. With Autism the child will always feel unsafe without those routines and that’s why they have high levels of Anxiety and other problems. Recently I was honest enough to admit to my Respite care coordinator that I was feeling a little stressed over Jay not being able to step foot in my garden or that he cannot be out at all with out the Phobia and Anxiety draining him and me, and he said it sounded like I was Anxious too. Dam right I am! It is very hard and I am an outdoor lass who loves Nature so it is doubly hard for me to stay in for Jay, although I do it for him whenever he has shown the need to zone out and come back to his safe spot. Constantly having to calm a child whose Anxiety levels are always high in the Holidays and always at the Fright or Flight level takes its toll on the Parent. For the child it is ten times worse. It makes me so sad that Jay has to live this way, and no matter how I feel, his feelings will always come first. I always return home if he is in Sensory Overload, I always come home if his Phobia hits and I give Jay space when he needs it to re set and re group. I listen to my own advice and switch off from the turbulent emotions running through my very soul, and get on with it, but it just makes me laugh because I will still lie to whomever asks me if we had a good holiday! I know many people lie about their true state of mind when asked if they are okay, but for us its all the time every time. I honestly feel like even with family and closest friends, that I cant tell the truth. They would listen, and then probably make their own judgement as that is what people out there do, although my family do support us. People can say they understand but they really don’t. You have to live with Autism to understand just how consuming it is for the child and the entire family. This is why using Respite is a good idea , as I said last post looking after yourself too is vital as you are no use to the child in a state yourself.

I will go on record on here as saying I am a true believer in Respite, both for the child and the Parents and Siblings. Always accept any help you are offered because there are days when the Respite can save you all, believe me! When everything calms down again I shall reflect on yet another holiday with Autism, and perhaps even smile at how we got through it and came out the other side reasonably well. Once more I need to stress how the child is never to blame. It is the Autism and in Jay’s case, the delays that lead to the issues and the reason we carry on is through pure love for that child. Love carries us forwards, and enables us to move ahead to the next day and face it head on. So the next time you ask a Mum with a child with Autism whether they had a good holiday perhaps be understanding that they probably are under huge stress but don’t want to say so. It is always worth digging a little deeper as they open up to you and tell the actual truth.

Never judge a person until you have walked a mile in their shoes!!

 

The Autism Parent: the vital importance of a calm mind.

 

Looking after our Special Child’s emotional well being is our responsibility, and many of us rise to this challenge every single day!

Yet, as Carers and Parents of Special children, how many of us can honestly say that we take the time to look after our own emotional health? This blog post today is about us the Carers and Parents , and how we can learn to cope mentally, with the everyday stress and challenges of Autism.  All my readers know how amazing we know Jay to be, and how much we love and respect him, but if Autism was easy then it would not be a special Need, and so to talk openly of the various challenges we face is to be real here, because I never promised just to discuss the brilliant side of Autism. We know Jay to be clever and intellectual, and incredibly special in his gifts. We acknowledge this every day and his loving nature makes him a joy to be around. Putting all this aside, the other side of Autism is where the stress can come. Early on in our journey, before we received the diagnosis and then the support, we were completely stressed all the time. Constant Meltdowns and Anxiety and Sensory Processing issues and Phobias were all present in Jay in our everyday life and to add to that, no sleep for us all before Melatonin appeared.  Alongside this we were working Parents too. My point is, is that four years of constant stress and pressure started to show in us, and in me particularly, as the main Carer, and eventually the scars began to show. I stopped sleeping, and had constant dreams about being chased by a T rex and at the time, I assumed the T rex was the Autism. I had always been fit and well, and suddenly I was feeling drained all the time, and because I did not have the support network I now have, I was left alone to deal with my issues of all I had to worry about, on top of a stressful job. Sometimes I felt so isolated and I could not even go in to my town, as Jay was constantly in a Sensory Overload Meltdown there.

I am sharing this early memory, simply because it has a lot of relevance to this post. Because, you see, after four years of what I now know was chronic stress, I began to feel ill. I did not know what was wrong, or why I was always in pain and utterly exhausted, and why I kept forgetting the Children’s names at work, or why I suddenly could not walk up a hill. All the while I was caring for Jay who was 6 at this time, and at this point we had some support in place in terms of Occupational Therapy and Psychologist  support, but I just knew that something was not right in me. I knew I had suffered a lot of years of worry and stress and also lack of sleep, yet I could not put my finger on what was wrong. Then the truth came out. In August of 2016 I was diagnosed with Fibromyalgia -another Autoimmune condition that causes chronic fatigue chronic pain and stiffness and it took some of my mobility. I could not walk far and was in chronic pain, and had chronic fatigue. I became aware that what I thought was the aftermath of Jay’s diagnosis years and his younger years when he could not speak and would just scream all the time, was actually a real health condition and a debilitating one at that! I did my homework and it is well known now that Fibro can develop after an episode of extreme mental or physical stress on the body, and the immune system can respond to long term stress and also lack of sleep and cause this condition.

Now of course I am not blaming Jay at all. I could never blame him, it is not his fault he has Autism. I am simply saying , that the effect on me could have triggered the condition to come on, and as I have had Autoimmune conditions before I am prone to them. The stress certainly would not have helped and I realised that I had to make changes. I left my job and took a part time admin job. I referred us as a family to Special Needs Social Care team for some extra support, and the referral was the best thing I ever did. We went through the process and were referred on the Disabled Children’s team and were granted money for Respite care year round. We now get respite support every two Saturdays, every Thursday, and all through the holidays. I need help to care for Jay, as my condition is seriously debilitating and the mobility side means I do need crutches at my worse flare ups and so I cannot hold Jay, so a worker will help me to take him out at my worst Flare times. I have lovely workers who support our family and it also is so important for Jay as he needs to be away from his constant Anxiety and OCD rituals he has within the home. Going out with the charity we pay to help us, means Jay is able to have experiences away from us with other children with SEN whom he often knows from his SEN School, and that I can rest up and be ready to go again in to my caring role when Jay returns.

So, we now have support in place and a constant steady routine that Jay loves and is happy with. He loves being with Mummy and he also has close bonds with his three workers too. I do believe that my Fibro was caused by that period of stress in my life plus my own immune system responding badly to stress, and so a period of reflection was needed. I had learned Tai Chi a few years earlier to having Jay and so I went back to the principles of this ancient art. Our bodies require breath to survive. We need to breathe. But many of us do not take the time to stop, stay still and be present in the feeling of breathing. Tai Chi teaches us to be grounded like a tree. Our breath is the life force running through us and keeping us well and healthy. When this balance is upset by events and emotions and of course, stress, the rhythm is broken, and we forget to stop and just breathe. I went back to taking time each day to sit in meditation, and to just simply breathe in and out steadily. Proper Meditation creates an amazing feeling of calm, where the whole body relaxes and the moment you stir from this you feel obviously calmer. I have shared before that I love all things natural, and Jay responds to this too. I only have to watch a beautiful sunset or a starry night to feel calm and relaxed and happy. I go Bird watching and Nature watching and this is a lovely calm thing to do. Like Jay I see beauty in the natural world and I do feel blessed to be able to pass that on to my children, so that they may also use it when times gets hard. I believe that to be close to nature, heals us and I needed to be healed. Even if it never heals my condition, it gives me the tools in which to cope with it and to help me care for Jay.

Staying calm is the single most important thing a Parent Carer can do for their child with Autism! The way in which we react is everything. I have never been anything but calm with Jay, as I learned very early on that any other reactions makes him so devastated. This is because children with Autism do not even know how to cope with their own emotions, so to ask them to try and work yours out is like asking them to fail! It can be very scary for a child with Autism to hear someone lose control and it is best avoided. Over the years I have gained a strong sense of self control. My husband and I do not ever raise our voices or show we are displeased if Jay is in meltdown or upset. We simply say to him “you are safe and you are okay. Everything is going to be alright. This is just a feeling, it will soon pass”   This is what we say no matter what is happening. There is a saying that goes ‘ if you cannot change the situation then change the way you respond to it, this is where your true power is’ Learning to respond to difficult and stressful situations that constantly come at you as a Parent Carer of a child with Autism, in a calm efficient manner and in a non-emotional way, takes lots of practice. But if we truly put our minds to it, we can achieve this. It is a skill to learn and you have to want to learn it to achieve it.

Worrying is very hard to control for us, as there are so many worrying elements with Autism and in Jay’s case the Global delay, which means he will always need caring for. The future!  Oh my, I do not even go there now in my mind. I pop the thought in a box in my mind as its far too overwhelming. I am an older mum you see in my 40’s. The other day we went to the Dentist with Jay, with the sole purpose of getting him a referral to a Specialist Dentist as he would never cope with a drill in his mouth and would need to be sleeping for them to do it. Jay did so well and let the Dentist look at his teeth. I told the Dentist our dilemma and she was understanding and said she would make a referral. But she said sometimes they have to need actual treatment for them to accept them, but that Jay’s condition may be enough. She then asked me to write the condition down on his health form, but afterwards because Jay wanted to go, I only wrote down briefly-low-functioning Autism and Global development delay. There is so much more to Jay’s condition that this and when I got home I began second guessing and thinking I had not said enough. Oh and what if he needed a filling and was in pain and I did not say enough? All these questions!  I suddenly stopped and thought ‘no I said enough it will be fine’ But I constantly think with his Health, have I said enough or spoken out enough?

Going back to reacting to stressful times with Autism, let us return again to the most primitive of systems we have- our breath. It is life. Children with Autism have strong fright or fight reactions to many things and so they are constantly in high alert which is utterly exhausting for them If we can learn to train our minds to reset and re group and to still our turbulent emotional responses to stress, then in time so will the child learn these coping strategies. All along I have taught Jay to take deep calming breaths each time he is anxious or stressed or going in to Meltdown. I tell him to pretend my finger is a dandelion and he can take a deep breath to help the seeds to fly. This has worked for years for Jay and now I can say take a breath in Jay and out and he will respond and understand. It really does help to calm him down. This most basic and vitally important system we have is useful in also controlling not only our emotional responses, but also our reactions. If we react always in stress, and with highly emotional responses, then our immune systems will, for that moment, become repressed and that allows illness to get it. Be that a cough, cold or flu, or in my case and many others, a more profound condition like my Fibromyalgia.  I really wish that I had known all this in the beginning of our Autism journey when we had no help understanding or support, and that I had not allowed myself to let stress in. But I guess when we go through hard times we are not really mindful of just how much it is affecting our over all wellbeing until we come through the other end and reflect and realise just how stressed we were.

It is so important not to blame the child or even feel resentful. Even negative emotions like these can bring down your immune system and cause ‘fright or fight responses. I believe the best thing we all can do, is to disconnect from that side of Autism and adopt a ‘can do’ positive attitude that we in Yorkshire call the ‘crack on’ attitude. Again, remember this- if you cannot control what is happening to you then control your response to it- that is where your true power lies. When times get hard with your Special child, no matter how you feel, stop and think, take a deep breath, and breathe it out, before you respond. The long term goal here is to re-train your mind to respond calmly. To master the art of remaining calm is an example of a truly strong mind. It gives you a coping tool to find real solutions to whatever Autism throws your way. It helps your child also learn to remain calm or to re set and calm down, and also means your mind and body will stay more healthy. This leads to a clarity of mind and re trains your thinking and results in a calmness of spirit that can get you through the bad times and give you hope. Then, when the good times happen you are able to truly appreciate them for what they are!

A healthy body starts with a healthy mind. Looking after our minds is just as important if not more important as physical health as the body will follow wherever the mind leads!

 

Jay and Sensory Processing difficulties

 

 

Recently, Sensory Processing Difficulty has been rearing it’s head again in our house. When Jay was five and six our whole life was run by Sensory Processing Difficulties. Jay cannot process information like Neurotypical people can. He takes time to truly take in each different form of information.

We all take in Sensory information all day long and in many different forms. We hear it, we see it, we feel it , we move in response to it. All our senses are hard at work breaking down this information bit by bit, in order that our brains may make sense of it and know what to do!

Now imagine that all that information is coming at you like a tidal surge! Swimming around up there in your Brain, yet the neurons in your Brain are not making any sense out of the information. Then imagine that all the information is bounding off the walls of the Brain, but without it making any sense as it is all scrambled and messed up. The information has gone in, but it has not been computed in the correct way. Then, the person cannot make sense of it or know what to do.

This is what happens to my Jay. He spends all day just trying to make sense of what information he is taking in. His Brain does not compute and break down the information he takes in, in all forms including what he has been told. This makes things incredibly challenging for him. Some information he learns at school does go in as he is now able to tell me what he has done at School, in a single word. This is a promising step that Jay’s Brain is changing and developing, as a year ago he could not do this.

However, Jay’s ability to deal with the day is again being compromised by Sensory Processing issues. We know this , because of Meltdowns. At the end of every School day, once Jay is home and settled, he will go in to a Sensory Overload or Meltdown. When this happens he is unable to self regulate for a while. A month or so ago, this began happening again after School! It was always at 4pm each night. It had the same trigger, and was frequently challenging, and we began to recognise that Sensory processing Difficulties had returned, after months of Jay managing better after School.

So, recently we had Jay’s Annual Review for his EHCP or Education and Health care Plan.

When we were asked what concerns we had or if any thing had changed, I brought up the return of the nightly Meltdown or Sensory overload. The lady who was chairing the meeting suggested that Jay’s Teacher, allow Jay some “down time” at the end of each School day. I commented that in Jay’s mainstream School they actually did this with him. He would go with his 1 to 1 in to the Sensory garden or Library, for half an hour or so and it gave him the necessary processing time. He needed time to take in what he had learned and all the sensory information he had taken in, and for a long time this worked and prevented such severe meltdowns from coming on after the school day. So, I said immediately lets start doing this again, with Jay being given time at the end of the School day in peace and quiet in the Sensory room at his Special School or the quiet Library.

The result of this is: it has been nearly two weeks since the meeting and Jay has only had two Meltdowns after School -it has changed to one a week from one each night. His lovely Teacher asked me to keep her posted on if this strategy makes a difference to the Meltdowns, and I am happy to keep reporting that it is doing. Actually, yesterday, Jay went swimming at School in the afternoon and I suspect did not get his down time because he came home very anxious and tense, and went straight in to Meltdown, but I suppose there will still be days when it fails or the Sensory overload is too strong for him to handle. It seems to be a very powerful thing. When Parents start on the Autism road, Meltdowns caused by Sensory Processing Difficulties can be very challenging and scary for both Parents and child. Learning about why they happen is the first defence against them. Only when we understand truly what is happening in these kid’s brains, will we be able to help the child to prevent them. De-sensitising the child is first and foremost. We cannot take them to a busy place with noise and people without using ear defenders or earphones, and we must give them time to process what they see and hear. We have used things like dressing Jay in Lycra clothing to help him to feel more calm, we have used a Squeeze Vest which are very good for regulating the nervous system. Unfortunately, Jay is not so keen on his vest.  He has asked for it a few times, but mostly he asks for his Ear defenders. He wears a cap and sunglasses to help him deal with light from the sun especially in Summer. We also stick to quiet places but if we do have to go somewhere busy, we use the Ear Defenders.

If your child is in Mainstream or Special school right now, and they are having these Sensory overloads and Meltdowns after School, consider asking the School to allow them “down time” before home time. This is a ‘reasonable adaption’ which they would legally be required to consider. Any adaption made for a child with Autism, has to reflect the well being of the child, and just because these children suffer daily with Sensory Processing Difficulties does not mean we just accept it and that nothing can change it. It can! Giving the child time to be quiet and still at the end of the day before going home, allows them to process at least some of the day. This can make a difference in the way they go home. Without this time they can get home and suddenly all the information from the day bombards them until they cannot cope and they will go in to an Overload.

In Jay, I have seen this approach make a difference. It does not take Meltdowns away fully, but it does cut them down.

I have talked about the ‘Delayed effect’ lots before but this is really what we are looking at when we discuss the subject of Sensory Processing. The ‘Delayed Effect’ happens when the information taken in to the brain in the day is not processed until a much later time and this results in all the information coming at once, becoming scrambled, and then mashed up. It then can only be dealt with by a massive explosion of emotion which is the response to the Sensory Overload. This leads to Meltdowns. Jay will often process something like a Storm a few days after. He will have a Meltdown then talk about the Storm and that he was scared. He tells me what is upsetting him, and often it is something that has happened hours, days or even weeks ago. This is ‘delayed processing’ and ‘the delayed effect’ then kicks in.

Since Jay had his Annual review and this strategy was implemented, we have seen an improvement in Jay after School. All you can do it try. All children with Autism are different and what works for one may not necessarily work for others. Yet we can only find strategies to help by trying them out. Finding the one that works for your child takes time. It also changes throughout their childhood. What worked for Jay at Four does not work now at Eight.  Jay used to calm to music, now he uses Technology. Oh yes , and talking about his Chickens!!! I quote: “Chickens can be white like Little Egrets”

 

dav
Bob the chicken