Can children Grow out of Autism?

Chrissy, far left, aged 11, with siblings, Jamie, 9 and Alex, 6

Did you read the Daily Mail story 'Can some children simply 'grow out of autism?' http://www.dailymail.co.uk/health/article-2103940/Autism-Can-children-simply-grow-One-mother-tells-sons-life-transformed.html I was irritated and perplexed by it, not least because it wasn't made clear whether Josh, the nine-year old in the story, who was diagnosed at three, still had a diagnosis of autism!

I was interested to see a piece on the NHS Choices website describing the Mail's claim as 'misleading' and offering a 'false impression to the parents of children with autism:' http://www.nhs.uk/news/2012/02February/Pages/children-grow-out-of-autism-claim.aspx

I suspect most cases of a child 'growing out' of autism are in fact initial misdiagnosis, perhaps made too early before the picture becomes clearer. Other overlapping conditions, such as developmental delay, can cause similar symptoms and diagnostic overshadowing. I'm not convinced by the early interventions argument. Although early interventions can improve problems associated with autism they can't cure it. In our experience identifying signs of autism can be open to interpretation and its diagnostic criteria has widened over the years. Is it being diagnosed too readily these days?

Far from growing out of autism, Chrissy appeared to grow into it! Autism was first mentioned by her speech therapist when she was four, who said that although she had very few words that she used 'parrot-fashion' like someone with autism, she used imagination when playing with a doll. (I think she brushed the doll's hair or spoke to it.) Another doctor described Chrissy as 'unautistic' because she was social and affectionate - the very opposite of the withdrawn and isolated child in a world of her own that used to be considered 'classic' autism. In fact, a paediatrician told us: 'Your daughter can't be autistic because autistic children don't speak.'

As I've explained here before, years later when Chrissy was 22, her psychologist diagnosed her with a form of autism classified as 'active but odd,' a diagnosis confirmed by Lorna Wing, MD, Psychiatric Consultant at the National Autistic Society, who checked the psychologist's extensive report. In 2010, a consultant psychiatrist from The Maudsley Hopsital's Autism Assessment Clinic confirmed the presence of autism from an early age after reviewing old videos of Chrissy. He noted her odd postures and facial expressions, and how she flapped her hands in front of her face even at six.

Looking back, Chrissy's autistic traits have waxed and waned over the years. When she was little she often appeared to ignore us when we spoke to her, but we put it down to her severe glue ear, then everything was attributed to her developmental delay. She's always had obsessive/compulsive traits - lots of verbal repetition and switching lights on and off - but taken alone they didn't signify an autism spectrum disorder. Her severe outbursts weren't triggered by changes in routine or anything else that seemed particularly autistic, but her problems with small daily transitions appeared to get worse as she grew older.

Around the time the photo on here was taken, she was going through a phase of turning everything round the wrong way and upside down in her bedroom but that's long since passed. Her over-friendliness has confused the picture in the past but it's now on the wide spectrum of socially inappropriate behaviour that people with autism display. I remember watching Rain Man for the first time back in the eighties when it first came out. I enjoyed the film then but didn't associate Raymond's problems with Chrissy's but each time I've seen it since the parallels are so obvious I keep gasping: 'Oh my God - that's Chrissy!'

These days, Chrissy has frequent spells of very autistic jumping up and down, flapping and screeching but not all the time thank God! Maybe some of these behaviours were always there but less noticeable in a small person but I do think Chrissy is less able to adapt to her environment than when she was little. She was more flexible and reslient then. Maybe she had to be because we didn't know what was wrong and expected her to fit in with the rest of the family. As she grew bigger the tables slowly turned and she either grew into autism or we were no longer able to resist its awesome power!


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How we really feel about our Children's Genetic Blips

I belong to a Facebook group for families affected by rare chromosome disorders. We mums discuss our children’s medical issues matter-of-factly and share our frustrations about fighting for services - but only occasionally do we dig deeper into our own feelings of sorrow and loss. Then a mum asked how we'd reacted when we found out about our child’s condition. It triggered an avalanche of emotion, so eloquently expressed that I was moved to ask if I could share some of the comments on here. There’s rage, despair and brutal honesty but shining through like a beacon of hope is our love for and devotion to our Unique children.

Jenny....We only found out about Steven's deletion in 2010 just before he turned 30....In a way it was a relief to finally have an answer and since being told what had caused his problems I have found out more about my son then I ever thought possible; it has also helped me to understand him better. My hubby’s approach was: "oh well at least now we know" but I had to find out as much as I could and in fact I'm still finding things out. Guilt was my main feeling for 30 years. There are days even now, 31 years later, when I hate what our lives have become. I love Steven to bits and would give up my life for him but there are times when I hate his condition. It does not make you a bad person for feeling like this – I think if people were honest most of us feel like this at some time or other. It doesn’t mean we love our kids any less. Some of us just struggle more than others....

Anon....12 years passed after our first daughter was born before my husband and/or I stopped shedding silent tears when we saw a child walking hand-in-hand with its parents. We could not adore our own any more than we do but grief for the loss of their mobility, or conversation, or demonstrations of reciprocated love, runs very deep. On the outside, people saw us as strong and capable - role models for other parents. Human beings are truly remarkable. Yep, there have been times when I have heard my daughter talking to me and seen the girls running around and at the moment of waking, I am full of joy. You don't realise how things have affected you 99.9999% of the time...

Jennifer....We found out about 1.5 years ago and I'm still as upset as the day I was told. Many days I am unsure that I can live the rest of my life with this. My husband is the strong one who is handling it well. I know people are all upbeat about their situations and many say they wouldn't change anything. Hate me if you want, but hell yeah I'd change it. This is not fair for Brooke, for her brother or our family. I am really bitter, angry, and want to talk to whoever is in charge to get this fixed. However it's not an issue that can be fixed. A friend of mine adopted two handicapped children from China and he told me it's easier for him because he knew what he was getting into. This was sprung on us and I for one am not happy. Of course I love Brooke, but it's something that I knew I couldn't handle. I'm one of those horrible people who would see a child with Down's and say a thank you to God that we didn't have that. I'm not strong enough to deal with it. Sorry to be such a downer. I'm sure I'll get a lot of replies saying that I need to see the positive side. Yeah, I've tried that. It still has changed our lives in a way that we didn't ask for, want, or can handle. I know I’m a bad person for saying that but that's how it's affected me. I'm sure we all go through the stages of grieving and I'm stuck in the anger stage. I love Brooke to pieces but one of my fears is that she will remain a toddler forever. Thank God I have my husband. I for sure couldn't do it alone....

Leah....We got Ty's dx sometime in his first year. 10 years on and I am still angry at what we have to go through, what I have lost and what I will likely continue to lose as time goes on. I know I have gained so much as well…..This week I hate this life and cry at the drop of a hat. Next week I will be on the front lines fighting bitterly for my son’s rights..... My ex-husband...well...he's an ex...that should tell you a bit about how he handled it. He manages to accept my decrees when I throw one down and tell him he will be doing such-and-such for our son. He doesn't like most of them and most of the time I have to battle him too in order to get him to understand why they are needed.
I cried when they told me 10 years ago and I still cry on a regular basis because I am exhausted and frustrated, and tired of fighting for EVERYTHING, and tired of watching my son struggle and not knowing how to help him. He is the light of my life, the very air in my lungs...I can't honestly imagine loving anything as much as I love my little man. I would give it all up to have him healthy, to have him "normal", to have him "acceptable" in society's eyes. I would give EVERYTHING up for my son to be whole. It probably seems odd to hear these things. Most people tell you something bad and then coat it in the sugary sweetness of how wonderful it can be to be a part of these kiddos’ lives. And sure...there are GREAT moments...but I wish someone had been honest with me...maybe I wouldn't have felt like such a horrible mom and a horrible person for so long thinking that I was the only one who HATED that I was dealt this card…..There are truly SUPERMOMs out there that take it all head on...and then there are those who take it head on because we have no other choice...someone we love needs us and we do what we have to, even though we may not like it. It is scary enough just getting a dx of anything other than "Your child is beautiful and healthy!" …..Even those of us with older children are still scared to death of the dx we were handed, what it means, what we do with it, what is coming. The hard part...no one really knows...

Jen....We found out last April that our daughter (22 months) had a chromosome disorder. We were devastated. She was developmentally delayed but we mistakenly thought that meant she would "catch up." My husband and I went through different grief periods with him refusing to open up about it and me needing to. I won out of course and we worked through it together. I thought I was losing my mind. What compounded our grief was finding out that our three year old had autism three weeks later. He had been speech delayed but we were told by Early Intervention that it was just a speech issue. They were wrong. To say my husband and I were then angry at God and everyone else is an understatement. It has shaken to the core my basic beliefs about everything. I hate to add even more but then three months later (this August) my healthy 15-year old collapsed and had a grand mal seizure, and has since had another and was diagnosed with a seizure disorder. Now I’m in survival mode day to day. I have a hard time even relating to people with "typical" children. Not because I don't have any; I have nine children. I was blindsided by the issues of my kids and am on antidepressants. I was going to school to finish my degree and thought our life was going a certain way and it took a long time to accept that I may have three kids living with me as adults. Jennifer, I feel for you, every one of us can understand where you are coming from. Sometimes I can't even imagine what kind of creator could let people go through the kind of heartache that we all go through with these kids. The challenges my kids face have opened up a whole new dimension in my life that most people don't get to go to and I feel very blessed to be able to witness the tiny miracles, such as my baby signing or my autistic son calling me mom. I know people whose biggest worry is when they can get their nails done. I fight bitterness because of the lack of support from both sides of our families but I know better so it makes me almost feel sorry for them. I can't imagine not reaching out to a family member who is going through this....



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Person Centred Planning

December 2011: Note rolled up sleeves - one of Chrissy's rituals

Person centred planning (PCP) is a way to support people with learning disabilities to plan how they would like to live their life as fully & independently as possible. Anyone with a learning disability can have a PCP, even if their communication is limited, as PCP is done in consultation with people who love them and know them well.

Chrissy has been in a therapeutic unit for two years and, although she's not yet ready to move on, we need to start planning her future now. The Challenging Behaviour Foundation advised that this can take 12-18 months for someone with such complex needs.

A PCP professional visited me on Wednesday and showed me an example PCP. It included gems such as 'When I sing Bohemian Rapsody watch out. I'm not singing happily - it's a sign that I'm about to lose control and I may throw something at you!'

With Chrissy, I follow my instincts, and take so many of her quirks & rituals for granted that it's difficult to convey her support needs to someone else. However, seeing the colourful detail in the example opened the flood gates. I found myself able to take the PCP professional step-by-step through Chrissy's daily routines. I explained that when Chrissy comes downstairs for breakfast she must have the larder and kitchen doors shut, lights switched on, the area around her chair cleared of any objects that she deems shouldn't be there, her two favourite drinks with two straws, a carrier bag with handles tied in a bow containing her chocolate mousse and a banana......

After all that and more, she will only eat her egg on toast, cut up, with two splodges of tomato sauce, when she's good and ready, usually when it's stone cold!

Explaining the detail of Chrissy's daily routines also helped me to gain more insights into her support needs, which I can pass on to professional carers. For example, I instinctively know when to make myself 'invisible' for Chrissy to adjust to transitions and self-calm. It may mean removing myself from view and watching silently from a safe distance, or simply avoiding eye contact and using minimal communication. When Chrissy arrives for her weekly visits home, I try to get her coat off and settle her into my routine, but the penny's dropped that she needs initial time to herself to wander freely from room to room to adjust to her new territory. She will eventually approach me and say something like: 'Mummy, I want to go on my computer.'

PCP reminded me how important carefully managed approaches are to support Chrissy effectively. The daily management aspects of her needs should be sufficiently met in a single service unit close to her family with a team of carers that know her well - but there are other considerations. Key is the proximity, skill and responsiveness of a multi-disciplinary clinical team. Failings in this area contributed to the breakdown of two residential placements, which caused her untold trauma. When it comes to 'what next?' for Chrissy, we must get it right this time.




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Epilepsy & Behaviour

Chrissy aged 10, with her chocolatey sister, Alex, 6

Since Chrissy's Topiramate has been swapped with Pregabalin, she's had two clusters of night-time seizures, one requiring rectal Diazepam. This is Chrissy's usual pattern but seizures were infrequent on Topiramate - the price she paid was being over-sedated, though not enough to quell her self-injurious outbursts. When her seizures started up again I hoped she'd get a break from her outbursts. They tend to be less severe during seizure cycles but this pattern has got less apparent as she's got older.

The reciprocal relationship between epilepsy and behaviour is recognised among medical professionals. It's like a pressure cooker releasing steam. Chrissy would have a build-up of challenging behaviours then seizures followed by a brief period of calm. When she was little I thought there was even more to it than that, and became convinced there was an epileptic component in the severe self-injurious outbursts. Chrissy's school teachers felt the same, and described the way 'something just came over her' as she sat doing something that she enjoyed. I became increasingly frustrated that health professionals were dismissing these outbursts as purely behavioural - as if they'd cease in a different environment.

When Chrissy was 10 my frustrations boiled over...

She was in Great Ormond Street Hospital for a routine MRI scan. A general anaesthetic was arranged because she wouldn't have co-operated, & she was given a pre-med. It sent her to sleep but she woke up when she was moved from her ward to the scanning room, and exploded into an outburst. She bashed her head repeatedly against the metal bars of her bed and tore at her skin. 'Now at last her neurologist will see one of these & organise investigations to find out what's going on,' I thought. How naive I was!

The hospital nurses were shocked at Chrissy's distress. One nurse, who'd worked in child psychiatry for years, said that she'd seen children with mental health problems in meltdowns before but this went way beyond that. Normally they gave up when they were exhausted but Chrissy appeared to be in the grip of something beyond her control.

The neurologist was called to the ward. He appeared, flanked by junior doctors, took one look at Chrissy, who was thrashing around on the floor by that point, and said: 'That's behaviour.'

As he turned on his heel to walk away, red mist descended & I threw questions at him like darts: 'If it's behavioural then how come she's had these from infancy? Why do they wake her at night? Why are they triggered by general anaesthetics & some medications? Why doesn't any intervention stop them? Why are they self-limiting? Why are they cyclic and worse in late afternoon? (as they were then) What about the strange physical symptoms - complaining about sore eyes, clawing at her face and extremities as if they hurt? What about the reciprocal relationship with the seizures?'

The neurologist insisted: 'What we're seeing now probably isn't the same as those you saw when she was a baby. This doesn't look like any seizure that I've seen. Epileptic episodes don't last as long as this. They're behavioural.'

I stormed off and had a good cry.

When I calmed down and returned to the ward, the neurologist took me into a side room and explained: 'I doubt that what I observed is caused by epileptic activity but I agree that there appears to be a reciprocal relationship between the seizures and behavioural outbursts. We really don't know what they are but behaviour sometimes worsens in children with epilepsy when seizures were well controlled.'

He decided to try a new anticonvulsant - Gabapentin.

Almost immediately Chrissy slept through the night for the first time in weeks. Two days later, the first thing I noticed when she came home from school was her smiley face and pink cheeks. (She looks pale & wretched when she's going through an outburst cycle). I asked her for a kiss. 'Screaming's gone.' she said.

Her teachers reported that she'd been 'brilliant,' amenable and well-behaved at school. I felt ridiculously emotional. Surely it was too early to be Gabapentin? Maybe it was a delayed reaction to all the pre-op sedation & general anaesthetic?

In fact, it was probably Chrissy's emergence from another bad cycle of outbursts but, when she's well, I always feel giddily optimistic that it will last. I rang friends and family to tell them about the change in her. 'Don't count your chickens....' they gently warned me.

Taken from my book: 'Bringing Up a Challenging Child at Home.'



I am a SWAN UK (Syndromes without a Name) blogger

Why I Felt I HAD to Share Our Story

My book reviews have finally appeared on Amazon. I saw them 10 years ago when 'Bringing Up a Challenging Child at Home ' was first published, so no nasty surprises there! My book includes a brutally honest account of how I felt at the time of writing, and I spared no one! It was very cathartic but I'd be a little more circumspect if I were to rewrite it now....

When I first discovered that Chrissy had learning disabilities, I assumed the next step would be an appointment with a specialist who would tell us the exact nature of her problems – a diagnosis. I expected to be given some idea what ‘mental age’ she would reach, and what obstacles we might face in future. How wrong I was! I gradually realised that medical professionals had no more idea than I did about how to treat Chrissy’s condition.

During her childhood I felt isolated and terrified - traumatised even - by the violent self-injurious outbursts I was dealing with on a daily basis.

I believed that Chrissy’s problems were unique or at least very rare. Now I know that there are many other families like ours living with a cherished child, whose behaviour is a nightmare to cope with. Our love for our children remains undiminished when confronted with behaviour we find abhorrent but sometimes that love isn’t enough. Our home becomes a war zone and we can no longer function while living together as a family.

Divorce is all too common in families like ours and it's often the mother left to cope alone. Ensuing social factors, such as poverty, may contribute to the child's behavioural challenges and compound the parent’s feelings of isolation.

If took 15 years for family life to gain any semblance of normality and to find ways to cope with the challenges Chrissy presents. My search for answers planted the seeds for my book and a career in journalism. I had to tell Chrissy's story, and my research led to a fascination with complex and misunderstood medical conditions like hers. I've had a number of related health and human interest features published in magazines and newspapers.

I wrote my book in 1999 when the cause of Chrissy's problems was still unexplained. My target readers were other parents in similar situations and professionals working with families like ours. I longed to reach out to other mums like myself, which is why I get so much out of interacting with you all now, and I passionately believed that the professionals needed to know what it was like living on the front line. There was a big gap in the market for a book like mine as there were plenty of medical books about challenging behaviour in clinical settings but not in the family environment. Jessica Kingsley Publishers and BILD (The British Institute of Learning Disabilities) were both interested in publishing my book. I chose Jessica Kingsley because I thought it would help me reach a broader readership.

Writing Chrissy’s story helped me to make sense of our difficult journey and led to wonderful revelations. I realised how much I had learned about acceptance and unconditional love. I discovered personal strengths (and weaknesses!) I never knew I had. After spending years in the thick of it, by the turn of the century I had the space to appreciate Chrissy as she is – and marvel over her. She has a great sense of fun and makes us fall about with her quirky sayings and observations. She is generous with spontaneous smiles, affection and cuddles, and opens our minds by showing us a uniquely different view of the world.

When my book was published, I had stopped grieving for the ‘perfect’ child I thought I'd had and learned that life’s greatest gifts come in the cleverest disguises.


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Festive Challenges and Autism Tips

Chrissy aged 9 with her sister, Alex, years before she was diagnosed with autism
Last Christmas was very difficult for Chrissy. The self-injurious outbursts kicked off on Christmas Eve then reached a peak during Christmas Day. She had 8 major outburts in 24 hours - including a hair-raisingly violent one during our 2-hour drive to her aunt's. (Her sister and I arrived in tears). Chrissy fluctuated between full-on screaming, rolling around on the floor and self-injuring, and being out of it. It was, as you can imagine, very disruptive & distressing for Chrissy herself & the 13 other family members around her. Because she was stripping off, we had to keep her hidden from her younger cousins' view - an almost impossible task.

Previous Christmases have been more Jeckyll & Hyde than last year's - outbursts interspersed with lovely times rather than lethargy. The picture above shows Chrissy enjoying herself but on & off throughout that day she had been clawing at her face & around her eyes. At one point, Ian had taken her outside in the cold & sat quietly with her for a while to calm her down & give everyone respite. Not all Christmases have been so difficult. Chrissy's autism fluctuates unpredictably like her moods, and appears to have got more severe with age.

We're hosting Christmas this year, which will make it easier to minimise triggers & manage outbursts. We'll celebrate Christmas around Chrissy & she can choose which parts to join in with. I won't involve her in the present-opening scrum, nor will I invite her to join us for Christmas dinner. Chrissy time is slower than our time. Once she's figured out that there's a feast at her disposal, she'll wolf down her meal in peace long after we've cleared the table. We'll also try some National Autistic Society tips to support The Diva through her festive challenges. Wish us luck! http://www.autism.org.uk/living-with-autism/at-home/coping-with-christmas/ten-ideas-for-a-happy-christmas.aspx



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Letting Go: When Love Isn't Enough

Chrissy aged 14 with a favourite teaching assistant, Geraldine, at St Elizabeth's School

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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