13 years ago I came to a crossroads. I could no longer manage Chrissy at home but how could I bear to part with her?
The first stage of the letting go process – accepting that I couldn’t care for Chrissy unsupported by community-based services – was respite care. She was only 7, and Ian and I decided to go on a family holiday without her. When I told a friend, she was shocked. “Chrissy’s your flesh and blood - how can you leave her behind?” she asked. Ian didn’t mince words in justifying our decision. We desperately needed a break and previous holidays with Chrissy had been disastrous. Holidays and special occasions can be purgatory for children with learning disabilities that struggle with routine changes, and there was no point in putting Chrissy, her two younger siblings or ourselves through what would be another ordeal. She could stay in respite for the week, which she enjoyed. I was discovering that tough compromises had to be made in order for us to function as a family.
When respite services were first offered I was at breaking point emotionally but felt like a bad parent because I couldn’t cope. The needs of my two younger children also had to be taken into account; having a disabled sister had forced them to grow up too quickly. When I’d had them I had no idea that Chrissy’s difficulties were so severe. I thought she’d just be a bit ‘slow’ and grow out of her outbursts like a toddler grows out of the terrible twos. The only person that suffered during the letting go process was me! Chrissy loved the respite centre on her first visit. It was full of friendly, cheerful staff, play equipment and toys. She didn’t want to leave.
Respite care became our lifeline. Mum was the only family member nearby, and she did her best to help, but she had my dad to care for, who had premature Alzheimer’s.
The introduction of behavioural strategies when Chrissy was 10 helped me to feel more in control and manage her better day-to-day but the self-injurious outbursts continued. It was as if she was in torment, in the grip of something she desperately wanted to control but couldn’t. Her doctors prescribed powerful sedatives and all carers, including us, were taught physical restraint. It sounds extreme but it was preferable to leaving her to her own devices. The anti-psychotic medications they prescribed sometimes had paradoxical effects and caused extreme agitation or nasty side-effects. Ironically, the use of chemical coshes was something I’d feared would happen if she went into residential care, yet here we were sanctioning its use at home.
Guilt and anxiety engulfed me – I beat myself up for everything I couldn’t do to help Chrissy and lost confidence in my parenting abilities. I persisted in trying to make her life as ‘normal’ as possible by including her in family activities and outings. We had some lovely times but, more often than not, outings ended in mayhem. Chrissy's SLD school was struggling to manage her outbursts too and an agency providing home carers during school holidays was concerned about them getting hurt. Something had to give.
The obvious solution was residential school but I felt torn. Chrissy was still like a toddler, and very dependent on me. I feared she’d be neglected or miss us terribly, but for her to suffer abuse like the disabled adults in BBC’s Panorama programme, ‘Undercover Care,’ was beyond my worst nightmare. Then I wondered: "Am I denying her a better life? Maybe she'll thrive in a more structured environment. Surely it’s better that she gradually gets used to residential care now rather than when we die or are too old, or ill, to cope?"
When Chrissy was 14 her life changed for the better. A new drug regime transformed her behaviour and we found a very special termly boarding school http://www.stelizabeths.org.uk/schooldefaulthome, a tranquil gem tucked away in the Hertfordshire countryside, I only wished we'd discovered it earlier. I was excited about what they could offer Chrissy. The pupils looked happy and cared for, and many had complex needs like Chrissy. Their on-site healthcare team could monitor her epilepsy closely and she would return home for weekends and school holidays.
Despite my optimism, I felt bereft when Chrissy first left, and wept at the sight of her empty bedroom – but my fears were unfounded; she never forgot who we were and always quivered with joy each time she saw us again. She was happy to return to St Elizabeth’s after visits home, and having time apart made me enjoy the good times we had with her more.
When Chrissy left school at 18 I accepted that adult residential care was the best option for her. We found a lovely care home 30 minutes’ drive away, and Chrissy was their first resident. Her carers spent time with us at home getting to know Chrissy’s needs and supported her to go out and about in the community.
Unfortunately, four years later Chrissy’s medication was changed due to a life-threatening adverse reaction. Her self-injurious outbursts intensified and couldn’t be stabilised with medications that her psychiatrists prescribed. Two residential placements broke down when they could no longer cope with her challenging behaviour.
Since January 2010 Chrissy has been in a privately-run therapeutic unit to stabilise her behaviour with medication and psychological approaches. She will remain there until she is stable enough to move into a bespoke service, which is still in its planning stages. Living in a hospital ward, no matter how homely they try to make it, is far from ideal. Many residential services claim to specialise in autism but struggle to offer sufficient staff training, structured routine, continuity of care and a person-centred environment.
As Chrissy’s mum, I feel no one can look after my fragile daughter like I can. She’s a hefty 12 ½ stone due to her medications but, in my recurring dreams about keeping her safe, she’s tiny, like the child she’ll always be in my eyes.
Other parents may manage to care full-time for their disabled children at home but some are harder to care for than others. I need all my strength to fight battles on Chrissy’s behalf, which is what I’ve had to do all her life. I do all her washing, still have her home every weekend, and move mountains to enable her to attend family events and celebrations. I leave no stone unturned in ensuring Chrissy gets the best possible care and, when things go wrong, righting them becomes a full-time job. I still fantasise about having her home full-time. Then I’m brought back to earth with a bump after a particularly challenging home visit.
Over the years, each time I’ve let Chrissy go a little – the first night in respite care, the first MENCAP holiday, then on to boarding school and full-time residential care, it’s been gut-wrenching but when I look back, I recognise that I’ve made the right decisions for Chrissy and my family. Her outbursts are so violent and unpredictable, and her needs so complex that it would be impossible to care for her at home.
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A tough life, and some very difficult decisions. I admire anyone who can put the needs of others before their own. Very familiar to me too, with a 17 year old in a residential special school. I feel incredibly lucky that he is only 30 mins from me - having just moved from the other end of the country and like you with other children to consider. Worth all the fighting to get the right provision and his quality of life is still improving...long may it continue!
ReplyDeleteI think what you have done for Chrissy is exactly what love is. You have put aside your own needs for the greater good of your daughter. You are truly remarkable. Although my daughters needs aren't as complex as Chrissy's, we are already exploring a supported living environment for her when she is an adult as I feel its important she starts to make that transition early rather than as an emergency situation if we were to become ill or die! This is a brilliant and informative blog post. Thank you so much. xxx
ReplyDeleteYour love for your daughter shines through this post, as well as the love yOu have for your other children. It's clear how all their needs were always your first priority, I also had the huge guilt thing about putting my dd into respite and as you say, it was only the argument thst she needed to get used to it in case I get ill that persauded me. Some people have already asked if or when I'm planning to put her into residential care, but luckily she doesn't have behavioural problems - its my son who has those!
ReplyDeleteIf I am honest Jane, I found that post both heart breaking and terrifying. My little man is not yet two. I know no one else can care for him like I can, just as you said, so how can I let him go to school? Of course it is not the same but I dread the future and the need to make similar decisions to yours. Already we make small adjustments - tomorrow there is a local Carol service. We should all go as a a family, but is that for me or for H? He won't benefit or enjoy it and potentially could have a seizure. But I want him there. He's my son. I can not begin to imagine how hard the decisions you have had ti make were for you. I only hope I can do as you ave done and make the right decision for my child.
ReplyDeleteHi Just me, thanks for commenting. Always good to hear from other mums with young adults. It's a great bonus to have your child nearby & well done for getting him in a service provision that he's thriving in. Not easy!
ReplyDeleteJontybabe - Your lovely comments have made me so glad I shared this post, which was adapted from a piece I wrote for Unique's newsletter. I guess your job gives you a wider perspective than most of us, one which I can only see in retrospect! There are so many options out there now, you are very wise to start looking early on xx
ReplyDeleteLooking for Blue Sky - another warming comment that made me glad I shared. I used to burst into tears whenever residential care was mentioned at meetings etc, which wasn't much use to anyone! Getting your daughter used to respite care in case the worse happens is absolutely the right thing to do in my view, & better to do it now rather than wait for an emergency x
ReplyDeleteLittleMamma, I always worry that some of my posts could scare parents of younger children but Chrissy's behaviour is at the extreme end. I, too would have taken Chrissy (when she was portable) to the carol service & enjoyed the experience of us all being together as a family. By following your heart you will be a happier mum, & little H can only benefit from that xx
ReplyDeleteJane, I am three quarters into your book, 'Bringing Up a Challenging Child at Home' and I hope that all parents of special needs children read it. Some will thank their blessings and others will be relieved to learn they are not alone in trying to manage a child at home with such severe challenging behaviour.
ReplyDeleteI don't think Chrissy could have asked for a better mother. Thanks to your hard work she now has the best of both worlds and she will always be okay because you're always there to catch her when she falls.
I can't begin to imagine the heartache you felt when Chrissy went away to school. In my opinion when a parent applies for residential care it is usually when they have reached the end of the road. I am no exception. Even though Marie had not been born to me, to all intents and purposes I had been her mother for almost twenty years when I began to think long and hard about residential care. I had grown tired. Not the kind of tired a good sleep would cure or two weeks holiday. I mean I was burnt out; had given all I had to give. I no longer had the bounce and enegry I needed to deal with the situations created by Marie's unpredictable behaviour. As much as I loved her and wanted to look after her forever I had to be realistic. If I'd kept her at home I would have ended up imprisoning the very person I had fought to free so many years before.
One thing that will never change is the worry we have about safety nets and funding. Even long after they have left home we're still fighting officials, dealing with assessments, filling our reams of forms and banging on doors but we've become so accustomed to it we're almost as expert as the experts.
You've made fast progress with my book Michelle! I had Chrissy home & was out last night so haven't been able to pick up your wonderful book again but I've promised my mum I'll finish it by Thursday when she comes to stay for Xmas. She'll love it.
ReplyDeleteThank you so much for your praise of me as a mum. I'm a better mum now I don't care for Chrissy full-time. When she was at home it was a case of fire-fighting every day & I had far less patience with her. I know what you mean by the burn-out tiredness. The resilience to deal with all the drama goes as you get older I find!
I think it's hard for anyone to truly understand the implications of a disabled child can have on a family unless they are in that situation themselves. A stable environment and routine structure can work wonders and if that means your child living elsewhere, we will move mountains to make them happy. I know families who have children with special needs and even though they know inside that the child need specialist care, they refuse to accept this and battle along by themselves - thus making life twice as hard for the family and especially the child involved. It sounds to me like Chrissy enjoys a good life and is content and that's all because of the unconditional love you have given her.
ReplyDeleteCJ x
Thank you for your insightful comments CJ. Soldiering on isn't always the best solution for everyone in these kinds of situations, as you point out.
ReplyDeleteIn Chrissy's first home there was a young learning disabled adult whose mum (his sole carer) had died suddenly, forcing him into residential care. He'd never been in residential care before & was traumatised - he had also, even more tragically, spent several days with his mum's dead body before anyone had discovered what had happened. An extreme case but we do need to get our children used to community-based services in case anything happens to us, if nothing else.