Helping Hands

I’m not sure how I would manage my family without the help of respite services.  I daresay I would be begging for certain members of the household to be institutionalised, with myself at the top of that list!

In all seriousness –  respite care is a service who’s value must go completely under the radar of someone who doesn’t need to access it.

My children are a constant source of joy to me, and  in  times of reflection I remind myself to be unconditionally thankful for all that they have brought to my life.  They have completely reordered my understanding of what is of value in this slice of reality that we can Life.  I no longer become attached to the material things that many people strive manically to possess, which frees me up from a whole lot of striving.  I have rediscovered my childhood appreciation of nature, being privileged to witness the natural world from Daisy and Lenny’s vantage points.  Intellectual  prowess has slumped right down my chart of what to value in another human being.  I see intellectuals as tortured souls, their busy, dictatorial brains disallowing any kind of peaceful harmony.  I’ve been taught to value the simplest gestures of affection, a light touch to my face, an intent gaze into my eyes.  This  responsibility of caring for vulnerable young people has re-educated me, I feel much more of what it means to be human, humane.  And all thanks to my lovely little cherubs!

That said, they are a tornado of destruction,  and I am required to constantly put the house back together to avoid our home sinking into an unacceptable and unworkable level of disarray.  Escapology is high on Lenny’s agenda, and he constantly keeps one eye on exit routes, awaiting his chance to slip out to that free bar of confectionery otherwise known as The Co Op. Puberty and the hormones that it heralds mean that my innocent little darlings cannot be left unsupervised in a room together (yes, this is innocence, at its purest).  Despite my new understanding of peace, nature and harmony, I am on constant alert until Daisy and Lenny are safely ensconced in their respective bedrooms, and even then, have to keep the telly or the music down low in order to listen out for thuds and bumps or sudden cries.

As the children have grown bigger, more apt to destroy things, more able to escape, offers of help have understandably dwindled.  The effects of this are manyfold.  Less  variety of experience for Daisy and Lenny, complete pressure on us, as parents, to provide all that should be provided.  I’m very lucky in  that I have a wonderful husband, Daisy and Lenny have a Dad who loves the outdoors as much as they do, and is happy to spend many hours exploring parks and building rope swings in the woods.  I have a good inkling as to how hard it must be for single mums in my position, and I don’t like to think about it very often.

So, my Knight in  Shining Armour, respite services.  What a difference my children’s respite places have made to our lives.  Freeing us up to do ‘normal’ things every now and then.  To go out to a show, or for a meal.  To take a short holiday where the pressure is completely off (though I must admit when we did this last September it took me three days to relax into it, my nervous system being hardwired for constant alert).  And for Daisy and Lenny respite gives them the opportunity to grow up.  Even though their intellectual ‘ages’ are much earlier than their chronological years, this doesn’t mean that they will be babies for every.  They are growing up.  They desire independence, even though this can never be absolute.  On  Sunday Lenny went to the seaside with his gang at respite, when we picked him up at 3pm he still had his trousers rolled up from the paddling and sand between his toes.  He was as happy as a boy could be, and this makes me very grateful.  How differently I would feel about the service if we had to drop them off kicking and screaming and begging to be allowed to stay at home.  But no, for both Daisy and Lenny, their time in respite is spent being engaged, stimulated, hanging out with friends and being given the 2opportunity to engage in the community without being on the end of mother’s proverbial apron strings.

For all of these reasons, and many more, I’m going to speak about the value of respite services at this year’s NHS Expo conference.  I’m very much hoping that the people with the power to invest in the service will be listening.


2 thoughts on “Helping Hands”

  1. So I’m 19 and have been recently been diagnosed with Autism and yourself and your daughter Rosie have inspired me so much with facing it, accepting it and not trying to act like it doesn’t exist so id like to thank you and Rosie for just being a very upfront and honest set of people.

    I’m asking this here because i’m unsure of my next step and If there is a chance that you have knowledge of helpful people or any information on ways to help with coping with autism I would love to here from you.


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