Tag Archives: family story

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.

Adapting life – a family’s story

One of our families has written a blog post about the many adaptations families with children who have disabilities have to make.

“Several years ago we were referred for an assessment by an OT to look at possible adaptations we might need to our house to make things more suitable for the girls needs then and in the future. We were in fairly uncertain times with no clear idea of which way things would go health wise, so it felt like we had to consider advice from any professional willing to offer it.

Following her assessment there were some fairly obvious things that were going to make a tangible difference once completed, like an easily accessible shower with a seat to rest weary legs. Level access to the property for wheelchair access and to prevent trips and falls when crossing the threshold. There were also some that came as a shock! Had we thought about how to get upstairs as things got worse? Would our stairs be suitable for a stairlift or if needed could we accommodate a through floor lift? These weren’t the conversations we ever thought we would be having.

As it happened she was a tad over zealous and the larger adaptations, thankfully, have never come to fruition……and breathe. But it certainly adapted our thought processes and our minds went on a journey of worry and stress that we hadn’t necessarily prepared for and actually weren’t needed.

But as I sit back and consider the past 11 years the adaptations we have had to make are many, but to the outsider many maybe frustratingly hidden leaving folk wondering what all the fuss is about!

Some of the things that have made a real difference to quality of life have been fairly unsophisticated like rubber bands round utensils and tubigrips on their arms to improve the messages sent back to the brain so eating and writing is more controlled. Getting seating and sleeping spaces right have prevented pain and spasms and enabled rest and ability to stay still! This might have been with bespoke specialist seating that come at an eyewsteringly high price or, with trial and error, the correct cushion or pillow shoved into various corners to prevent bumps or prop up legs!

We no longer have an old icecream tub to hold our household medications…we have a whole double cupboard dedicated to the bottles, tubes of creams, spacers, inhalers, dosset boxes and all other necessary medical paraphinalia that keep them well & sparkly!

We have walls decorated with visual resources painting a picture of how the days are (in theory) going to pan out. Not too detailed so minor changes can’t be coped with, but detailed enough to be the lynchpin for the day. Essential to help with the difficulties with transition and inherant need to control…ahhh! Visual prompts to accommodate one child with short term memory difficulties & the other struggling with executive functioning & concentration.

The lounge which in theory is our calm space is filled with peanut balls, exercise mats, and a human sized bowl for spinning and chilling in that provides just enough sensory feedback to keep our sensory bunny calm! Though doesn’t necessarily calm everyone else as they create an undesirable trip hazard in the thoroughfare!

Adaptations to meal times to accommodate the sensory culinary preferences (cottage cheese, chickpeas and anything burnt!) And a constant supply of crunchy snacks, chewing gum or chewy items to prevent any more bite marks in furniture or chewing of clothes due to the constant oral sensory seeking behaviour.

Normal planning doesn’t do for us! Logistical management takes on a new level considering fatigue, sensory overload, medications, splints, ear defender’s, weighted jackets, visuals and also how to practically manage 2 children in wheelchairs when their maybe only one adult!

Adapted bed time routines, that involve so much more than bath, teeth, pj’s story & bed.

Adapted life plan! Not just avoiding pomotions & working part time hours, but a whole different career, a whole different mindset. How do you get the flexible working that takes into account the days off school due to frequent sickness or school refusal, the micro management of meetings or appointments, tests & all the necessary paperwork, DLA, EHCP, carers assessments? Oh yes & the financial restrictions put on you when you receive carers allowance! You can have it if you care for someone more than 37 hours, but you can’t claim it twice for looking after 2 people & by the way you can only earn  £100 a week! If you have a career that you trained hard for actually getting a contract for so few hours is nigh on impossible! The solution I have fallen into is effectively being my own boss, working hard when I can so it doesn’t all fall apart when I can’t! Trouble is that level of juggle sometimes leads to me falling apart!

Emotional adaptations you have to make along the way can have massive impacts. Relationships are tested as you effectively tag team the caring role, no time to talk or process the latest appointment, diagnosis or meeting about school. The different timings in the processing of it all as one crashed & grieves the other has to up the ante! Friendships are tested and sometimes don’t survive, so a new support network formed. Extended family roles adapted as the expected role of grandparents is morphed into respite carers, and comes with it a whole set of logistical & emotional challenges.

But then there’s the positive adaptations that have taken place. The appreciation of the smaller details, celebration of the moments when unexpected milestones are achieved that otherwise may have been taken for granted! A different level of understanding your child inside & out! The involvement of family to achieve a special trip means they get to be part those intimate moments that they may not otherwise have been part of…Disneyland, trips to London.

The adaptation of our attitude on life! Live for today not for tomorrow, learning to dance in the rain & not waiting for the storm to pass, remembering it’s not what happens that’s important but what you do about it! But really learning that you can’t change the situation you haven’t chosen to be in, but you can change the way you think about it and embrace the necessary adaptations rather than fight against them!”.

You can read this, and other blog posts, here.