I often forget that The Boy is now officially an adult because, cognitively he is no older than three or four years of age in many areas. He is very energetic, he likes to be active and go out and do various activities, or at least have access to them. He still loves going to the park and squeezing himself onto the slides which he is far too big for or sitting on the roundabout whilst I spin it as fast as possible. He still plays mimicking games with The Baby (my eight year old) or the neighbours’ children, copying them if they roll down hills or make silly noises. He still loves soft play but he became 'too big' to access those facilities years ago so, instead we visit trampoline parks and indoor inflatables parks in neighbouring towns as we don't have anything like this in our local area. These facilities also help to meet his sensory needs. His TV programmes of choice are those for pre-schoolers, and he asks for toys for Christmas and birthdays which he should have outgrown over a decade ago, yet I will continue to buy them for him because I recognise and acknowledge that he has not yet moved past this developmental stage and may never will. Instead, I allow him the time and resources to continue in this phase because it is important to meet him at his level and go at his pace so that he can reach his full potential, whatever that may be.
Where has the fun gone?
We have just gone through the process of transitioning him over to adult services. Due to where he sits on the spectrum this has been an extremely straightforward process as his needs are quite high and he requires a lot of support to complete many everyday tasks such as preparing meals, getting himself ready and generally keeping himself safe. This is a whole new arena for both of us and I have some learning to do regarding his rights as an adult to advocate for himself despite his severe learning disabilities, and my rights as his parent/carer to continue to advocate for him where appropriate. Having said that, there was one aspect I was completely unprepared for: the loss of, or reduction in play.
I knew things would be different when he moved over to adult services yet as we have progressed through this phase of our journey it is becoming evident that, as our young people start transitioning into adulthood, less consideration is given to the need for access to on-site play facilities for those with complex needs. They may have access to leisure activities within their provisions, but they do not seem to have play equipment such as climbing frames, swings, slides or trampolines on site for those who still enjoy such things, or even require them to meet their sensory needs.
School
The Boy currently attends a special school which provides provision for children and young people aged three to nineteen years and he has attended there since he was five years old. The curriculum is tailored to meet him at his level and enables him to learn in a variety of ways such as through cooking and going out into the community to purchase snack items for the class. The school is spread across two sites in order to accommodate the growing population of pupils in attendance, with the younger children and those with profound multiple learning disabilities (PMLD) on the main site and the further education students on another site. This is where you can see the differences begin to show.
On the main site, the playground has lots of play equipment such as climbing frames, a slide, swings, a roundabout and a sensory garden. They also have an on-site swimming pool and soft play room. The other site is located on the grounds of a local mainstream secondary school and, as such, the students no longer have direct or regular access to the facilities on the main site such as the playground equipment or the soft play room, which is often used for letting off steam and reregulating. They do have alternative outlets such as exercise equipment and they also access a local swimming pool, but it is not the same. In fairness to the school, it is something they have identified as lacking and are in the process of changing but, due to the events over the past two years this has been delayed.
Short breaks/respite
The Boy accesses short breaks within his care package and was previously allocated four nights per month at a council run children’s respite provision in our local area. He loved it there and looked forward to going each time, particularly as they have a large garden with play and exercise equipment, as well as a large trampoline- and he is amazing on a trampoline! They also built on the skills he was working on both at home and school whilst he was there, such as preparing food, washing and dressing himself and accessing the community (pre-covid).
We were presented with options for adult respite provisions for him and, unfortunately in my locality there was nothing available which offered the same or similar set up. Having spoken to parents whose young adults have transitioned in the last two years, the existing provisions were not meeting this need and for those with more complex needs the options appeared to be a provision outside of the borough, residential care or nothing.
Residential care is not something I have ever considered because I have always been adamant that The Boy will remain with me for as long as possible, but neither is sending him to a provision which is potentially at least thirty minutes away. Not only is this impractical but I would worry about not being able to get there quickly enough if there was an emergency. For more benign reasons, it would make it difficult to drop off forgotten items or provide more medication if The Boy had tampered with the prescription labels.
As the previous provision was only a short distance from my home, it was easy enough to drop things off but to have to drive to a provision thirty minutes away and home again only to discover that I needed to immediately repeat this journey was not something I wanted to do. For me, it defeated the objective of respite because I would be worried about these things occurring and therefore would not relax or make plans to go anywhere just in case. At least with the provision being within my local area, I could ask a family member or friend to pick him up or drop things off, if necessary, which may not be possible if he were farther away. This then left us with the option of no respite.
The Boy also accesses summer play schemes organised by local organisations and, again, some of these are no longer accessible to him now that he is eighteen, which is such a shame as this is another activity which he and many young adults like him would still love to attend but are unable to. Perhaps it is not feasible to do so, there may be financial constraints, or the focus is so much on them becoming as independent as possible and getting into some type of work or training that they have just never considered it.
Yet these types of activities are their opportunities to socialise, to develop those important social skills and build peer relationships, but they are being reduced or removed completely as they enter adulthood. There is a wide group of young adults with additional needs who are sitting on a middling road; they are chronologically too old for these activities and yet there is nothing they would love more than to access them because developmentally they are still children. Having worked with young people with additional needs who were moving into adulthood, I have seen this first hand and those young people were able to articulate their wants and needs more clearly than The Boy. I recall them objecting to being referred to as ‘kids’, and quite rightly so as they were not children, they were between seventeen and nineteen years old, yet they would readily play a game of hide and seek when the opportunity arose!
Turning 18 changes nothing
The Boy and many of his peers who he attends school with don’t get to do the usual rites of passage when they turn eighteen such as getting their first job, learning to drive, going out drinking with friends or attending university, therefore adulthood has no real significance to them and yet it still changes everything. It is sad that play appears to take a backseat for young adults once they transition despite their developmental delays being apparent and such equipment potentially being necessary to meeting their sensory needs. As a parent, I do everything I can to teach The Boy new skills in order to help him become as independent as possible, but I also acknowledge that he is still very childlike and wants to do the same things he did when he was four years old. The lack of consideration and subsequent provision to meet these specific needs means that our young adults are potentially losing out.
Play is a significant part of a child’s development and, for many of our young adults, learning through play continues for a significantly longer time. This should be nurtured and encouraged for as long as necessary if it is having a positive impact on their development or supports their sensory needs. To suddenly treat someone like an adult and lessen access to such activities or equipment simply because they have hit this milestone age does them a great disservice. It deprives them of so much and forces them into a role they may not be ready for. We need to continue to meet them where they are so that they have the best chance to thrive and succeed.
Update:
I originally wrote this piece in April 2021 prior to The Boy making this transition and have updated it to reflect our current circumstances.
We have been very fortunate as a new respite provision recently opened in our area and The Boy has been allocated a place there which is fantastic- they even have a trampoline! Whilst this is good news for us, they only had two spaces available which means that other young adults with complex needs who are transitioning in the next year or two may still be faced with the prospect of no respite due to the alternative provisions not meeting their needs. I have also spoken with some of the organisations about extending the age groups of their summer schemes, as well as on local forums and one organisation is hoping to pilot a summer scheme for adults aged 18-25 which is amazing!
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