An Inspiring Mother

hands2If you were to catch a glimpse of Anne walking down the street, you would not think her extraordinary in any way. Perhaps you wouldn’t even notice her in the first place – most people don’t notice old women. If you did pause to look for a moment, you would see a white haired, stooped, smartly dressed eighty three year old who still moves quite briskly for her age. If you looked a little longer, you may pick up in her unflinching, challenging gaze a hint of the steeliness and determination that sustains her.

Anne’s son is nearly fifty now. He does not live with her, but she sees him three times a week. One day she visits him, one day he is brought to see her and one day they are supported to go on an outing together. If they have enough staff on the rota to provide him with the two-to-one cover that is required to keep everyone safe, that is, so quite often it gets cancelled.

She told me that she knew from when he was a toddler that something wasn’t right. To start with, people told her the tantrums were a phase that he would grow out of and that all children behaved this way. She so wanted to believe that her beautiful, bewildered boy would stop the biting, the head-butting, the rocking, but as time went on and he didn’t grow out of anything, she grew more and more worried. As the months and years ground on, it was clear to everyone that he wasn’t developing as he should; that he was not ‘normal’. The few words he learned were simply not adequate for him to articulate the frustrations he felt with the world and so the lashings out continued. He clung to Anne as to an anchor in a stormy sea but, sometimes, she got in the way and the older he got, the more it hurt.

Friends drifted away. He was too difficult to be around and people – even the kind hearted, sympathetic ones – didn’t want their children to be around him. Eventually, when their boy was five, Anne’s husband left too and neither of them have seen or heard from him since.

The doctors tried to help her, but they couldn’t find an answer. He was definitely autistic, they told her, but that couldn’t explain everything. There was no other specific diagnosis, but talk of ‘developmental delay’. They talked about finding him a place in a children’s home, about how this would be the best place for ‘a boy like him’. So she went to look at the one they wanted to send him to and decided that no-one was going to lock her son up and throw away the key.

Who will love him when I’m not here?

So she fought the doctors who thought they knew best and kept him at home with her. She fought the social workers and she found a special school that would take him. She fought the local authority and she got the budget for transporting him to school and home again and for some respite time for her, so she could keep going. She fought the system and – eventually – she got the disability benefits to which they were both entitled.

Who will fight for him when I’m not here?

When he got to be adult sized, Anne realised she could no longer cope by herself. She couldn’t keep him safe and she couldn’t keep herself safe. She couldn’t believe that he wanted to hurt her, when she knew he loved and needed her so very much, but she did keep getting hurt. The amount of physical restraint required to control him became impossible when there was only her there to do it and he was bigger and stronger than she was. The complexities of dealing with a boy whose hormones, cruelly, developed normally whilst the rest of him did not, were too great for her to manage alone. So he went to live in a house with ‘boys like him’, with staff there day and night. And then, in due course, to another house, with different men.

Now, at almost fifty, he has been living in the same house for nearly two decades. Other men have come and gone, carers’ faces have changed regularly but there has been stability and security for him and always his mother at the centre of it all. Anne has continued to fight for him every step of the way, has been at every assessment and has protested against every repeated attempt to cut his care package. She has taught herself about the law and about his rights and she has been tenacious at securing those for him.

And now, as she progresses into old age, Anne is preoccupied with trying to make sure everything is as secure as it can be for her child before she dies. She has made sure that her son is not just locked away, that he has the opportunity to have physiotherapy in a hydropool, that his physical health needs are not neglected just because he cannot articulate what those needs are, that he is taken out into the community with an appropriate level of support.

Who will make sure he gets what he deserves when I am gone?

She has made friends with each and every one of the underpaid, endlessly replaceable carers assigned to be his key worker, to show them she appreciates what they do in the hope that they will be more inclined to look kindly on her son.

How will he cope in a world when he is difficult to like and there is no one left who loves him?

She is dismayed at the news of the austerity measures and the public sector cuts and what this will mean for her boy. She has refused to accept austerity-inspired attempts by harried social workers to ‘still meet his assessed needs, but in a cheaper way’ and has harnessed the support of charities and solicitors to prevent her son being moved, aged 49, to a care home with people decades older than him.

Who will protect him when I’m not here?

Anne once told me that she wished people who said they never wanted their children to grow up had some understanding of what having a child denied the opportunity to grow up was like for a mother. Meeting her, witnessing the strength of her love for her son and the extent of the fight she has made, has been humbling and moving.

She is an inspiration as a woman, an (unsung) disability campaigner, carer and mother.

Advertisements

17 Comments

Filed under ageing, individual development, parenting

17 responses to “An Inspiring Mother

  1. beautiful blog post hun, very inspirational.

  2. This is beautifully written, and so moving. I can’t imagine how hard Anne must have had to fight for 50 years to have ensured that her son has been cared for in the best way possible. Especially as I imagine that understanding of autism 50 years ago was not what it is today.

    I think what is forgotten when people lament their children growing up is that much of why we feel that way is because we want to always be able to take care of them. But, of course, if your child actually is not able to grow up, you will eventually face the fear of knowing that you won’t always be able to take care of them even though they will still need it. That must be heartbreaking.

    Anne deserves to have her story told and her strength known, and this is a great post that has done just that.

    • louisek2014

      Thanks. It is very difficult to see how much she wants to stay around for him and how inevitable it is that she cannot do so.

  3. This is a very powerful post and it is not just Anne out there in that situation. I speak from personal experience. It is so hard to know that death means leaving behind a child who has severe issues. So well written. #PoCoLo

  4. Mothers will always be mothers no matter how old your child is. A beautiful post. Just beautiful.Thanks for sharing. #pocolo

  5. A beautifully written post. A mothers bond is so special…forever. Thanks for sharing #PoCoLo

  6. Pen

    This is quite simply the most beautiful and powerful post I have ever read. I don’t really know what to say, other than thank you for sharing it.

  7. What a beautiful and powerful post, it brought tears to my eyes. Thanks for sharing x #PoCoLo

  8. This is beautiful.
    As a mum to two very lovely autistic children, I could totally empathise with Anne’s fears for the future.
    The tolerance of autism and mental disorders has improved slightly but there is so much more awareness needed. I can’t imagine how difficult it was 50 years ago for Anne to try and obtain the help and support needed, it’s hard enough now.
    Thank you for linking up with #SSAmazingAchievements

  9. sarahmo3w

    What a moving post, which just goes to prove how strong mothers are and how hard they will fight for their children, even when those children are old enough to be grandparents themselves. It’s hard enough for parents of children with special needs to get support these days, it must have been so much harder in Anne’s day. What an incredible woman.

  10. Wow. What a post. I think this has to be one of my most favourites from you. This is the true love reflection of a mother – their strength, resolve and determination. How to be bold, despite all the odds. Wonderful. Thank you for linking to PoCoLo.

  11. Pingback: Newbie blogger May 2015 round-up | The Single Swan

  12. These stories need to be told and you do so with such compassion and insight. They are the legacy of this time and not just personally moving but of historical, political and moral importance. Keep writing, please.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s