An introduction to us

My name is Emma and I am married to Michael – it is our 23rd wedding anniversary today – and together we take care of Joshua, our 17 year old son.

joshua and emma

Joshua was born on 5 march 2001, after being induced as he was two weeks overdue. It was a very speedy delivery, which I do not remember too much about, but he began fitting as soon as he was delivered and so he was taken away to an incubator immediately. Later that same day, when he continued to fit and required oxygen to breathe, we were both transferred in separate ambulances to the Special Care baby unit across the city. We stayed up all night watching him and jiggling him as we had been shown, when he forgot to breathe.

On our 4th day in SCBU, Joshua had a MRI Scan and we were told that he had ‘devastating brain damage’ due to a stroke, and that he may not see, hear, walk or talk. This was unbelievable news to absorb and it took another week in SCBU to adjust and to get to know how to care for him properly.

When he was 11 days old we brought him home and we tried to do what we had been told, to treat him like a normal baby. We had no other children so that was all that we could do and Joshua thrived. He grew from being a very thin, newborn to a chubby, smiling one year old. We had regular health visitor attention and Joshua received Portage input too. With the help of splints, Joshua walked and he talked, he would say “hiya” to everyone when out shopping. So I was able to fool myself into believing that, he may be a bit slower than his peers, but that he would achieve all of his milestones.

It was only when Joshua started at Nursery school, when he was at aged 3 or 4, that I suddenly saw that my bouncing boy was not the same as his friends, and it came as quite a shock. At 4 years old, epilepsy became a real issue and we had to start on anti-epileptic drugs. Joshua progressed with his peers to mainstream primary school and thanks to his brilliant Nursery head teacher, he had a statement which meant that he had a full time teaching assistant to support him there. He loved the first couple of years in reception classes, when he would sing at himself in a mirror – he did a great rendition of ‘Magic Moments’ and ‘Close to you’.

But as everyone got older, he was spending more and more time alone with his TA in a small room playing with toys while his peers were learning maths and history. So we made the difficult decision to apply for a Special School place for him. When he was 7 years old, Joshua left his ‘friends’ behind and changed to a special school. His first was not a great success as it coincided with his epilepsy getting much worse and the school was simply not equipped to deal with the aftermath of seizures, so he was forever being sent home or sent to A&E in an ambulance.

In 2011, when Joshua was ten years old, we went to a tribunal to move him to another Special school, which had school nurses on site. Joshua is still at that school now, in their 6th form, and it suits him very well. When you find the right placement for your child, it is a very comforting feeling, as though he has gone ‘home’. I like the school so much that I have become a school governor and volunteer there a lot. I have a mission to support other parents and to encourage them to socialise more, so I run a monthly coffee morning for parents when we enjoy cake and chat. I have also just begun to organise termly mental health sessions for parents and carers, as it is still a taboo subject and yet a very real problem among our community of parents.

However the end is well in sight. Joshua will have to leave this school when he is 19 years old, in July 2020 and so we will soon begin the ‘transition’ process. I detest transition as in my experience, it involves changing from a comfortable, familiar environment to one that is unknown and frightening. I begged Joshua’s nursery head teacher to keep him there until he was 16. She refused, on the grounds that he would be too big for the furniture! I have stopped begging now. I realise that time moves on and that Joshua will have to too, but it does not mean that I have to like it. I have made great progress in the last year as I am no longer an ostrich about it and that is largely due to our Adult social worker who has given me more confidence and keeps us on track.

We are currently in the process of looking around alternative respite provisions, as where he currently goes once a month for a weekend’s short break, will no longer be able to keep him once he turns 18 next March. Once that is resolved, we can turn our attention to his day care provision. We are going to lose the epilepsy nurse who has supported us for the last 13 years, as we are transferred into adult healthcare. It is all change, so turning 18 for Joshua is not like the momentous milestone that it is for his peers: it will not be about legally drinking alcohol and going to university for Joshua, it will be about transition to adult services and starting again, just as we were on an even keel with his health and social care.

You can read more from Emma on her blog Ups and Downs Mum. Emma will be writing some articles for us so if there are any topics you’d like her to write about let us know in the comments.

6 responses on “An introduction to us

  1. Eleanor

    Thank you for sharing Emma. Your story has so much familiarity for many families.
    You are right that the transition to adult services is a huge challenge. It is like starting at the beginning again. Once your child reaches 18, there are additional hurdles that we have to deal with. The main one being that we can no longer make decisions for our children, no matter how dependant on other people they are to manage everyday life..
    We have been so used to managing all their needs and ensuring that the sevices they require are provided.
    It was a real shock for me to find that a whole meeting of professionals was required to decide that my son could have his teeth removed under general anasthetic. He didn’t have the ability to do this himself and we his parents were not allowed to consent to this treatment. We of course had always done so up until this point.
    It can be very hard to accept that the best interests of your son or daughter can be decided by others even if you disagree.

    1. Emma

      Thank you Eleanor for your kind words. We are still to face that problem once Joshua is 18 next year. It is impossible to believe that anyone would think that we have anything other than our child’s best interests at heart. Joshua has the cognitive ability of an 18 month old, but still the law goes by his birth date and the age of his body rather than his mind. I have already had some battles with DWP and National Savings and am now regarded as Joshua’s trustee. x

  2. Jane

    Dear Emma,
    this is wonderful, I can imagine what you’re going through now, as your son gets older. We had our ‘transition process’ not long ago. My son turned 18 last January and is now living since April in an ‘institution’ for adults, where he‘s preoccupied the whole day (similar to what he did in the special school), eats and lives under supervision with other 5 adults in an apartment. He also still gets his physical therapy twice a week. It was an enormous burden for me at the beginning of this transition, mental and most of all emotional. But all in all, I think it was a good decision. My son has not changed, he’s happy, healthy and loving as always.
    I wish you all the best…jane

    1. Emma

      Jane
      Many thanks for your kind comments. I am delighted to hear that transition to adulthood has worked out well for you and your son, though I can just imagine the agonising to get you both to that comfortable place. Happy, healthy and loving are great quliaties to have xx

Leave a Reply

Your email address will not be published. Required fields are marked *