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.
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!
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!
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