When I wrote about Short Breaks, I was referring to a form of respite that gives parents a break from caring for a child with special needs, but mostly an opportunity for growth for that young person.
With little man Tom, our respite needs are quite different. Although he would undoubtedly benefit from a similar scheme in the holidays, this is unavailable as far as I know so far for a child with his disabilities. Tom does not have autism and easily gets along with other children, making outings to the park a pleasant experience. In Tom’s case, the need for respite is a more traditional one. Caring for him is a physically and emotionally demanding task and we simply need a break every now and then.
For several years now, thank to social services, Tom has had a respite package that allows him to go to Cherry Trees approximately once a fortnight. He arrives often on a Sunday morning and stays there until Monday morning when he is taken to school.
The benefits to me as his primary carer are far greater than one might imagine. The relief that comes with not having to remember to feed him, to cajole him into having his feed; not having to ensure that meals cooked include one of the few foods he will eat orally; being able to sleep soundly without one ear listening for the feeding pump’s “beep” or Tom’s cries of pain in his sleep; knowing that there will definitely not be dirty sheets to wash in the morning; not having to keep an eye on his activity level in order to avoid a bad night of pain; not having to constantly monitor sibling activity to avoid injury… all of these daily activities can be suspended for a glorious 24 hours.
Dear husband and I can spend some time together, quietly… a precious thing indeed. Princess Kesia can also have a break from the little brother who does not understand her need for quiet and solitude, not to mention the constant worry about his health that she carries around with her day in day out. We often use these days to do an activity that Tom cannot access – a bike ride in the park, or a craft that he would quickly become frustrated with, or simply a quiet afternoon reading.
In many ways, we turn into a “normal” family on the days which Tom spends at Cherry Trees.
How about Tom?
Recently, he made a few moany comments to our social worker about going to Cherry Trees. These were the very typical moans of an 8 year old who feels he may be missing out on something. She took these comments very seriously, telling us that as “the client”, he must be listened to. Oh the need to wrench my hair out and scream at that remark! In the case of Tom’s respite, I, we, his family are the client, not Tom.
It is extremely important that Tom be comfortable and happy where he goes, not to mention well looked after. BUT the reason for the respite is to allow the rest of the family time and space to regroup and regain the energy needed to look after him well when he comes home. So I maintain that we are the client.
As for the little bratlet that moans!!! It is true that Tom can make a little fuss at the idea of going to Cherry Trees. Anyone who has known our family well for a few years will know that this is directly learned behaviour from Zack who used to access Cherry Trees and fussed at each visit (transitions being difficult for him). Upon arrival, Tom runs to find out which bedroom he will be sleeping in and which member of staff will be looking after him. Within five minutes he is playing happily and frequently cannot be bothered to say goodbye to me!
Days at Cherry Trees are wonderful – the right combination of calm days which often resemble one another intermingled with exciting days out. Tom loves the days out, but also enjoys the simple pleasures of playing in the soft play room, watching a film, playing in the garden or going to the sensory room for some quiet.
He sleeps extremely well – better than at home at times which I’m told is quite frequent (darling children!!) and mostly is given responsibilities which boost his self esteem. Indeed, I often tell people that in the course of 24 hours at Cherry Trees, Tom ages by about 18 months. His whining stops, he takes on chores without moaning and he is more attentive of others.
Cherry Trees is a respite home which looks after children with all sorts of disabilities. They manage to treat each child with huge care and respect and challenge them in small but meaningful ways. Tom is often asked to set or clear the table and helps to strip his bed in the morning. He is allowed to play as he likes, but will be encouraged to help less able children at other times.
And mostly, he comes home happy, often with a little tale to tell and always having had a good day. If he misses his Mummy and bed in the evening I can only think that he is a rather well balanced little boy. A little homesickness seems a small price to pay for the peace and happiness I see in him (and in us) when he has spent the day at Cherry Trees.
Not only do I have to thank social services who provides us with this package, but I have especial thanks to the tireless work put in by the staff at Cherry Trees who tirelessly care for my little boy. They always have a smile for him and us, and never fail to notice if something is not quite right. They take time to listen and hear, and then they act on what they can to change something wrong or at the very least find a kind word to spur us on.