I met a mother not so long ago who told me about her son who had left school three years previously and was still living at home aged 22.  This young man has complex needs and a high degree of Autism.  She was tearing her hair out about him; she simply didn’t know what to do or how she could carry on.

So I asked a bit about his history. She told me that whilst at school, he would get up in the morning with intent, wait eagerly by the front door to leave for his school day and would return energised, if not a little tired, but looking forward to the following day back at school.  He would talk about friends he had made and things he had done every day. Three years later, he now is a virtual recluse, refuses to leave the house without huge persuasion and spends the majority of his time playing computer games or watching television.  He has rejected any of the activities she has tried to organise, his behaviour has regressed and he no longer talks about new friends he has made.

Whilst I empathise with parents like her who prefer to keep their children at home after leaving school, I wanted to confront her and say, it could be your fault, you know.  And here’s why; when a child with very complex needs is at school (often from the age of 2) they have structure and a routine.  School also provides an environment where they are part of a community and where they can form relationships; with staff, with pupils, with support workers.  These different people and the structure help them develop their skills and bring out their character, just like any other child. Their life has momentum and regardless of their disability, they are developing as people with their own identity.

When they leave school, that structure, routine and community disappear.  As a parent there is no doubt that you can offer the best personal care and attention.  But is caring for them enough?  Does that definitely mean your child is leading as fulfilled a life as possible?  Can you be sure you are offering them the same opportunities as they may be afforded elsewhere?  Most importantly, can they develop as their own person with friends and a life that is totally about them, and not you?

As parents at home, you simply don’t have the structure and resources to offer children with very complex needs the same opportunities as they might have in a care environment.   You are alone and have to do all the activities yourself; get them up in the morning, give them the personal care, take them out and about, access all the activities that they may be interested in accessing.  For those they may not be interested in accessing, you have to find out why is it that they don’t like it and then try something else.  Someone’s interests change over time and so this is a continuous process.  And it is a killer. By the time you have done all of that you are not giving them a real variety of choice and opportunity.  Even if you have access to good day services this is not a long term view.

In a supported living or residential setting, there are other people living in the home accessing their choices which gives variety.  There will be something in amongst that list that does appeal to your child and new opportunities will arise as they develop over time.  Staff can take a long term view and put in place plans that will facilitate that individual in getting there, even if it does take years.

As far as Laura is concerned, the most important things about living in her home is the large community and her having company day in day out. If she were living at home with us all the time, she would just have Paul and me, and that’s not enough.  That’s lonely.  And that’s why for her, supported living is not ideal.  We were offered a placement where she would only have been with two other people and with agency staff coming in to look after her – that continuity simply wouldn’t be there.  She could never have formed any relationships and develop her own identity and her behaviour would have changed as a result.

I talked the mother through options around supported living and residential care but she wasn’t receptive.  She was adamant that her son would stay at home because she couldn’t bear the thought of him being anywhere else.  I understand this, it’s what, as parents, we all want.  But the question she needs to ask herself is, “is this the best outcome for him?”


4 Responses to “Isolation”
  1. Dinah says:

    Hi my son still lives we me and he is 26, I have work and i have Michael, but he brings me so much joy, and even at 26 he is still progressing, i saw on the webite the fantastic places in Lincoln, and i would have been happy to give it a try, but unfortunately live in Northampton and dealing with the authorities and cutbacks etc, you have all come across them, and its a constant fight.
    But I have to confess i believe i am Michaels problem, confinced im the best carer for him, wrong so i have set myself a target that in 3 years time when i am 55 i will for Michaels sake allow him to go into residential, because at some stage i will suddenly not be there, hopefully it will not happen before then, but at least if i am in control of finding the correct place rather than for him to have to go into a strange place where the staff would have to try to learn from Michaels behaviour. I personally have made my decision to devote myself to Michael and not have a life much outside the home, and i suppose a little of me fears what will i have when i let go of him, Not proud of my decision to hold on to him. i definitely think i have held him back its a mother thing. the secret for me in the possibility of lettting him go was to visit residential homes, the minute i walked into one of Ann De Savary home i felt i could let him go, so if you have access to the internet, make your own list and visit and get a feel of different place , and if even one place feels good, you may be able to let go a little, because it is inevitable we are not going to be here for ever, But dont punish your self its a little thing called loving your child that makes us like it..

  2. Dinah says:

    Anybody who reads Ann word, i would
    sugest talk to Ann or her staff, visit one of the wonderful homes .

  3. admin says:

    Hello Dinah
    Good to hear from you and to hear about Michael. Being ‘out-of-county’ is not a problem. Over half the people we support are from out of county placements and we work with 21 Local Authorities. Funding is available for people with complex needs for whom there is not an appropriate service in their authority. Yes there are budget cuts but for us, it means we are constantly striving to improve to deliver more for less.
    Do get in touch if you would like to speak about the future, or visit us again.
    With best wishes