Catching up & Moving on

The last time we'd taken Chrissy to her step-nan's (pictured) was over five years ago. The four-hour journey had been gruelling with a distraught Chrissy repeatedly undoing her seat belt, and screaming, self-injuring and wedging herself into tight spaces.

Last weekend's journey was very different. Apart from the odd burst of repetitive questions, Chrissy settled down in the front seat next to Ian and was content to watch the world go by. When we stopped off at a service station she never once tried to escape to explore the numerous glittering attractions we saw en route to the Ladies. Unheard of!

When we arrived at her nan's Chrissy rushed inside to greet her, grinning from ear to ear. 'I never thought we'd see her like this again,' her nan said, all teary eyed. 'I thought we'd lost her.'

I welled up too as I watched Chrissy taking everything in. She had seen her nan earlier this year when she'd come to stay with us, and she knew who she was. I'm not sure that she recognised the house though. Then her face lit up again as she spotted her sister, Alex, who had come down from Manchester. We hadn't told Chrissy she'd be there or she would have obsessed about it on the way up.



Chrissy is always thrilled to see her siblings. Normally, unless she sees someone regularly she struggles to remember them but she always knows who her younger brother, Jamie, and little sister, Alex, are. The evening went well but Chrissy ate voraciously. We are always trying to distract her and discourage her from overeating but at times, she constantly demands food.

Her happy mood gradually dissipated on Saturday. This often happens after she's been particularly bingey. Something kept coming over her - we never know what - but she suddenly becomes distressed for no discernible reason, and starts screaming, twisting her hands, bending her fingers back and pulling her hair, then she snaps out of it and gives us a beaming smile.

Another mum posted something on a forum that reminded me how difficult things once were for us, and for many other parents of children that have this rare disorder:

''My son's behavioural issues/outbursts/tantrums have escalated so intensely that we don't know what to do anymore. When he gets upset, which is often and for no reason, he is un-calmable. He is incapable of self-soothing, and literally needs me to physically calm him down, rubbing him, deep breathing - sometimes yelling to snap him out of his ritualistic obsessing. It's more than I can take right now and I'm not sure what to do. He woke last night with such emotionally disturbing tantrums and terrors that both my husband and I were in tears......''

Although this desperate mum's description propelled me back to dark times, it also made me realise how far we've come. Chrissy's behaviour will always present challenges to people that look after her but we attribute recent improvements to her revised meds regime. She's still on Prozac but off all antipsychotics. Her behavioural outbursts rarely escalate, her overall mood is much happier, and we can take her out. She continues to be far more alert and engaged in what's going on around her. Her hilarious, stream-of-consciousness observations are back too, giving away all our best-kept secrets! 'Nanny blue jacket, grey hair!' 'You don't like dogs do you mummy?' she declared to my mortification as her nan's adored border collie entered the room. 'Ian farts sometimes,' was another random pearler she uttered loudly and clearly in front of his family. She also threw in a few 'bastard shits' and a couple of 'fucks' for good measure.

The visit was a success, despite Chrissy's changeable mood, and seeing her pleasure at being around loved ones has helped me to re-evaluate what she needs from a supported living placement. I yearn with every fibre of my being to keep her close by where I can protect her and see her more often - but it's not about my needs as a mum - it has to be about what's best for Chrissy. Her psychiatrist and a housing adviser suggested that she'd be better off living in a nearby town. Good public transport links and local amenities would give her more choice of staff and activities, and she wouldn't keep bumping into me while she was out and about. I believe the benefits of living in a community that she's familiar with far outweigh the benefits that are being advocated for her living elsewhere. Chrissy would lead a more fulfilled life if her home was in a familiar place where she has connections to the local community and people that love and care about her. To gain these connections in an unfamiliar place would be a very forced and difficult process for someone that needs 24-hour care and functions at the level of a toddler. Are we in danger of using the 'one size fits all' approach to supported living that is all too often the reason why residential placements break down?

And if it is agreed that Chrissy should live in our village, will government policies dictate otherwise? The current housing and support system is failing many people with a learning disability, who face a lack of housing options due to welfare reforms and budget cuts. Housing benefit caps make rent unaffordable and, although Chrissy can apply for exemption, many private landlords won't accept tenants on benefits, let alone one with a learning disability. Social housing is also inaccessible in some rural areas with specific local connection eligibility criteria. Chrissy wasn't considered for the newly built affordable housing in the village because other applicants that have lived and worked here for years have a stronger local connection. Our only hope is that a suitable, reasonably priced house will come up for sale and a registered landlord will agree to purchase it, and rent it out to Chrissy, possibly in a shared ownership capacity. Struggling to unravel all the supported living red tape makes you wonder if it's delivering on its promise of offering more choice, control and inclusion.

Here, an excellent report by Mencap explores the barriers to successful independent living arrangements, and suggests a national strategy for housing people with a learning disability.
http://www.mencap.org.uk/download-housing-report



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

Supported Living: Cutting through the Confusion

A supported living option we viewed

We decided some time ago that it would suit Chrissy best to live on her own in the community, with round-the-clock support to help her achieve as much independence as possible - but the choices are mind-boggling and rules about eligibility criteria keep changing. We are just starting down this road and embarking on another steep learning curve!

Here's some information I've gleaned so far, which I've simplified for my own benefit. I hope it helps any of you going down the same road....

Renting privately doesn't work for many people with learning disabilities as standard tenancy agreements only cover a 6 or 12 month period and the landlord can evict the tenant at short notice. It's also unaffordable as most rents now exceed 'local housing allowance' - a term used to describe the maximum amount of housing benefit payable. Another complicating factor is that many people with learning disabilities may need a two-bed house for a carer to stay overnight, or mobility aid adaptations that a landlord wouldn't be prepared to make.

Private sector lease management bypasses some of the obstacles to renting privately. Here, the landlord lets his property to a third party 'Not for Profit' or Registered housing provider that only sublets to disabled tenants. Golden Lane offer a service like this and are affiliated to MENCAP, who would provide the care. Under a private sector leasing arrangement like this, Chrissy's housing benefit claim could then be assessed as exempt accommodation or an excluded tenancy - which means her claim would be excluded from the ordinary rules that cap housing benefit.

In most cases, the only way Chrissy could apply for exemption is if the landlord, or someone acting on his behalf, was prepared to offer a certain amount of care, support or supervision. If she wanted to rent from a private landlord, and care and supervision was independently and wholly commissioned by Social Services, Chrissy could not claim exemption. However if she rented from a registered social landlord, who would contribute to her care and support (I was advised that the amount of support varies but ordinarily around two hours a week) this would fit the bill for exempt accommodation and allow more flexibility on the amount of housing benefit paid.

The care, support and supervision rule deters most private landlords but you would think that it could work for parents if they could afford to buy their child a property to rent from them. Unfortunately, laws governing families renting to disabled relatives are complex and restrictive. A way around the care, support and supervision rule is for Chrissy to rent from a registered housing association. Because the housing association is already regulated by central government and receiving government subsidies it isn't obliged to provide the care and support and it could come from another source. If the housing association don't have anything available they can do a lease deal or buy something outright for Chrissy on the understanding that she would rent it from them.

Our final option, and the one that interests us most, is shared ownership. Chrissy will be on the high rate of DLA for mobility & care again when she leaves hospital, which means she should be eligible to get a small mortgage to be paid for from her benefits. The top-up amount needed to buy something suitable would be paid for by a registered housing association that runs such schemes. They would do all the repairs and maintenance, and it offers Chrissy the most security as she would be a leaseholder. The main drawback for us is that this route is more lengthy and complicated than most, and Chrissy is due to leave the assessment and treatment unit in the next two months.

If we do opt for shared ownership we may have to look at what could be done to support Chrissy here at home with us during the interim period between her discharge and finding a suitable place to live.

Some time in the future we may move to a different area & buy two houses close together with Chrissy in mind. Where we live now is in the middle of nowhere and I've abandoned the idea of her living in the same village. In order to make the most of her independence she will need to be near a town with access to a wide range of amenities and good local transport routes to offer a better choice of staff.

So far we have been offered one option - our local PCT have a vacant bungalow adjacent to two other homes that are singly occupied by women with learning disabilities. They would all be cared for by the same team. The downside of a commissioner providing both housing and care is that the roles would be harder to split if there was a problem say, the care provision failed but the accommodation was fine. This option looks good on the surface, and the bungalow is in a nice area, but I'm uneasy about putting Chrissy completely in the PCT's hands because they've let her down repeatedly in the past. It's also further away from her family home than is preferable.

Another maze to navigate and a big responsibility resting on our shoulders. We need to get it right this time to give Chrissy the life she deserves.


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

Another Outing & Feeling Torn...

Out for Sunday dinner with sister & cousins

Third proper outing in the past month or so. At first we ummed and ahed about whether to take Chrissy with us as she woke up on Sunday in such an unsettled mood. Feeling torn is part of being Chrissy's mum. It's hard to know what to do for the best because she is so unpredictable.

The day got off to a difficult start. Chrissy was shouty & repetitive as I was getting her dressed, she then blundered into Alex's room and woke her up. Result one very stroppy Alex, who'd been up until 4am lesson planning for her new teaching job. 'If you take Chrissy I'm not going,' she announced.

'No, we'll drop her back.' I was hedging my bets. I planned to make up my mind once we got nearer the restaurant. Chrissy's ATU was very close by so we could do a detour if necessary.

On the journey there, Chrissy obsessed non-stop about food. We tried all the tricks, getting her to repeat our answers back: 'What did we say Chrissy?' Signing zip it up & 'yes' instead of giving verbal feedback & so on. Nothing worked but optimism prevailed. We owe it to Chrissy to keep taking chances on her and I banish memories of previous disasters. Onwards and upwards!

Our table was perfectly positioned in its own room. It wasn't completely private - people could walk through it to the garden - but it was a handy escape route for us too! I prayed that sausages, Chrissy's favourite, would be on the menu & that somehow we could get her to wait without kicking off. Ian was a star - he drew sausages, wrote s-a-u-s-a-g-e-s & got her to copy it, & asked Chrissy what she would be eating with her sausages. 'Is it tomato sauce?' 'Is it mashed potatoes and gravy?' A diet coke with two straws and no ice was duly served to Chrissy. She eyed it warily because it wasn't in her usual bottle or cup, and we breathed a sigh of relief when she accepted it, topped up with water, just as she always likes it.

During the wait for food, Chrissy grew increasingly curious about what was going on around her. She introduced herself to her reflection in a mirror on the wall above the table, then, clapping, flapping and talking at the top of her voice, she made her way, like a galleon in full sail, towards the main dining area. There was no stopping her so I grabbed her hand and managed to steer her past the bar and other dinners to the loo, then back again to her seat. People politely pretended not to stare and I politely pretended not to notice.

Ian then managed to divert Chrissy outside and I left him to it. Sometimes Chrissy can be overwhelmed by two people talking to her and directing her. After 10 minutes I went to check everything was ok and found Ian patiently pushing her on a very sturdy swing in the garden. The expression on her face was beatific. She was the most relaxed I'd seen her all day. Another item on the 'shopping list' for Chrissy's new home.



After dinner Chrissy nagged obsessively about pudding. After pudding it was 'I want sandwiches' but we got through it all without mishap and, although Chrissy's mood wasn't as good as it can be, she enjoyed her meal out. As Alex says 'it's like she was about to kick off but somehow she never did.'

Then came the part that tugged at my heartstrings. We took her back to the ATU and her face crumpled. 'I want to come home,' she sobbed. Tasha, a carer she really likes sat with her for a while & managed to distract her with a picture book. Then Chrissy called out 'bye!' to us quite happily.

I was told that she had been crying to come home in the week too. This is another effect of Chrissy waking up after medication changes. She knows all too well what she wants and she's telling us loud and clear. I can't put into words how torn & guilty I feel over this & I wouldn't mind betting that many other mums in my situation feel the same. I rationalise it by telling myself that she's an adult and most people her age live independently anyway but she's like a toddler - so terribly vulnerable; Ian reminds me that one day we'll no longer be around, so she needs to get used to living away from home; I remember how hard it was to let go when I first had to accept that we could no longer cope. It gets easier but the ache never goes away. You just have to find a way to live with it.


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

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....



Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/

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.


Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/

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.




Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/

Perfect Days

What a fantastic mood Chrissy was in tonight. No outbursts, not even a hint of one. I heard her clapping & cheering when I arrived to pick her up. I was told it was because she'd heard I was coming. When we got home she was chatty & playful, laughing at & interested in the antics of our two cats. Anxiety-related autistic traits were subdued - there were no bedtime rituals & minimal obsessive/compulsive repetitive questioning.....No, not a wonderful dream or wishful thinking. That's the enigma of Chrissy. It's a privilege to share these inexplicably 'perfect' times & they light up our lives.

Chrissy's Epilim has been increased as part of a programme to withdraw another anti-epileptic, with the ultimate aim of reducing the number of different drugs she is on. Could that be why she seems so joyful & relaxed? Experience tells me not....

The Royal Wedding through the eyes of someone with autism

"Is she going to bed?" Chrissy said when I asked what she thought of Kate Middleton's wedding dress! Chrissy watched the royal wedding highlights with me in the evening & stayed reasonably engaged, cuddling up to me on the settee, throughout. She seems drawn to churches & thinks all priests & religious men in robes are called 'John' because Father John was one of her favourite people at St Elizabeth's, Much Hadham, Herts., a fantastic termly boarding school run by nuns that she attended from age 14-19. She enjoyed going to church at St Elizabeth's when she was calm enough to attend.

I found myself in floods of tears watching Kate Middleton's proud dad walk her up the aisle - it hit me anew that Chrissy would never get the opportunity to marry or fall in love. I have another daughter who has those choices in life but my grief wasn't about me, it was about Chrissy & the opportunities denied to her.

At home here yesterday, Chrissy kept remarking on the sound of bells that rang out from our local church. It was hard to tell whether she enjoyed the sound or found them irritating. Chrissy can't express how she feels. She has a wide vocabulary but much of it is learnt, although she can appear to use relevant phrases, such as 'it's sunny outside.' Trouble is, she sometimes says that when it's raining & overcast. If you check her & ask: 'Is it sunny or raining,' she usually gives the right answer - she just trots out repetitive words & phrases without thinking.

We have solved the bedtime problem touch wood :~) The hospital told me that Chrissy has two pillows there. I tried two at home & she was fine. It's interesting that she didn't realise she needed two pillows to feel comfortable, as she will often ask for two of everything else. Such a simple & easily avoidable misunderstanding that had been causing so much aggro! It is very easy to over-estimate Chrissy's abilities to express her needs because she appears to have better communication skills than she actually has. If we had given Chrissy the choice of one or two pillows, she would have chosen two. We just need to become better detectives I guess.

Rare chromosome disorders, learning disability & social class

I got chatting to a very well-heeled lady about having a child in the family with a rare chromosome disorder. She took great pains to impress upon me that no one in her family were carriers & that if the baby was going to be intellectually disabled effects would only be mild because the baby would 'have the best.'

Chrissy's chromosome disorder was de novo (spontaneous) - neither I nor her dad carried the micro-deletion. It was just a one-off, an accident that could have happened to each & every one of us. Does this make us somehow 'better stock' than other families where one parent does carry the micro-deletion? NO! Yet I got the uneasy impression that in this lady's eyes the carrier issue is a big deal for all the wrong reasons. I also wondered how stigmatised & embarrassed the family would feel if the baby were to grow up with significant learning disabilities. As if you can control the severity of intellectual disability by throwing money at the best physios, occupational therapists, psychologists etc.

People need to wake up to the facts: rare chromosome disorders & learning disabilities cut across all social classes.

Are you Mummy....?

....the question Chrissy asked me today while I was running her bath. She answered it herself - 'Possibly.' A learnt, meaningless word but funny & fairly appropriate nonetheless. Chrissy often does this - asks a question then answers it, & sometimes goes on to conduct a hilarious surreal conversation with herself using snatches of words & phrases overheard in others' conversations.

On the drive back to hospital Chrissy spent about 5 minutes shouting in my ear: "Are we going for a drive?!" Mozart's 2 Pianos didn't work but 'Forget You' by Cee Lo Green did (this time!). She suddenly stopped shouting & started dancing in her seat, her face wreathed in smiles. She can make you despair/furious/sad/exhausted one minute then switch moods in a flash & make you smile/laugh/feel full of love & gratitude that you have been blessed with such a child. Loving someone like Chrissy is an emotional roller-coaster as her mood swings are so all-consuming & unpredictable that you can't help mirroring them.

When I dropped her off, without a backward glance, she headed straight for the kitchen & food. So different to when I picked her up. Then, her face had flushed at the sight of me & she'd hugged 2 members of staff, laughing uproariously with joy....

Bringing up a Challenging Child at Home: When Love is Not Enough

27 years ago today my first baby was born. I was 23. My rapture at having such a beautiful 'perfect' baby soon turned to a gradual chilling realisation that something was wrong. Initially, health professionals refused to take my concerns seriously & treated me like a neurotic first-time mum. As I searched for answers and struggled to cope with my daughter's violent cyclic outbursts, epilepsy, general sickliness & bizarre behaviour I felt very alone. Not knowing what is wrong with your child is like being lost in the wilderness without a map. In 1999 I decided to write a book about my experiences with Chrissy called 'Bringing up a Challenging Child at Home: When Love is Not Enough,' published by Jessica Kingsley, London. My book aims to offer practical advice for other parents and to give a unique insight into what it is like to bring up a very complex & unique child, who we now know to have severe autism & an extremely rare chromosome disorder.

The sensory overload of a hospital appointment

Chrissy appears to have no concept of time but she somehow senses if she hasn't been home for over a week. Last weekend I was away so didn't bring her home as usual. When I phoned the hospital to finalise details of today's appointment with Chrissy's neurologist, a nurse told me that on Saturday, she had donned her hat, coat & gloves & demanded to come home. When her request hadn't been granted she'd become very distressed. So, feeling guilty, I decided to bring her home today after the neurology appointment, instead.

The appointment itself went smoothly. Chrissy veered off into a shop inside the hospital for a diet coke & briefly interrogated a tiny child she was curious about but we didn't have to wait for long to be seen. The neurologist was well-informed & thorough, & I was happy with the meds change she advised. The two nurses that came with us brought the car as close as they could to the entrance so Chrissy didn't have to walk very far with the wind blowing her face - something that makes her react as if she's under attack. She moaned a bit & full-on sobbed at one point but all in all she coped very well.

The reaction came later back at home!

As usual I'd organised everything beforehand so that I could give Chrissy my full attention - I'd even pre-cooked tonight's dinner. Unfortunately, Chrissy wanted her sister's computer even though she now has her own laptop. After screaming & throwing herself & other objects around for 10 minutes she eventually calmed down & played on her laptop at the kitchen table. Another outburst kicked off when her lunch came - meal times & food are often triggers. Eventually, when I added an egg & tomato sauce to her tuna sandwiches, she settled down. Simple solutions but rarely obvious ones....

Sleeping with flowery curtains & the awesome power of autism

Lively banter between Chrissy & step-dad, Ian, last night. A lion in her DVD cartoon roared, making Chrissy laugh. Ian asked what the sound was. 'Evil' Chrissy said. Breadth of vocabulary astonishes us at times. How did she know that word & relate it to roaring? She will stop in her tracks to point out tiny details in a room that we'd never notice, such as the 'Home' written on my Homepride biscuit tin, or a miniscule spider hanging from a big window, & put the correct name to them.

When we put Chrissy to bed, she said she wanted to change her 'cushion' (pillow). I turned it over a couple of times, which usually does the job, but she wasn't having it. Her eyes darted around her bedroom, and alighted on a pair of her old flowery curtains in a pile in the corner. "Want flower cushion," she said. Ian showed her that they were in fact curtains but Chrissy insisted on having placed around her pillow before she would settle.

This morning it was 'I want two' of everything from tissue to toast. We tear tissue in half & cut toast up, & she's satisfied with that. Light switches went on & off, every door around her was shut until she felt calm enough to take her tablets and eat her breakfast.

During all Chrissy's waking hours her life & the lives of those around her are governed by the powerful force of her autism.

Getting our daughter back..

After the sudden move, I'd lost confidence in the quality of care Chrissy had been receiving. Doesn't take much. Trust had been shaken so many times by past events pre-hospitalisation. However, today, after a care programme approach meeting, my confidence was restored & my fears allayed. The meeeting was very well-planned & well-attended. I was impressed & moved by the obvious affection hospital staff had for Chrissy. It was clear that all attendees wanted the best for her & several health professionals said how much they enjoy working with her. One of her nurses added that they had all learned so much from Chrissy. I can't tell you how good it felt to hear that. We still learn so much from Chrissy too! I know how exhausting Chrissy can be but it's wonderful to hear that I'm not the only one who sees the rewards. The professionalism & attention to detail by the medical team in preparing their report was second-to-none. It's in stark contrast to all the meetings we used to have pre-hospitalisation with hidden funding agendas where Chrissy's healthcare needs were denied. I won't let it lie. There are too many vulnerable adults out there, with complex needs, like Chrissy, who don't have anyone to fight for them.

After the meeting we met with the CEO to discuss the problematic move. He was open & apologetic about what had gone wrong. I feel reassured that lessons have been learned, & this incident will not be repeated. I was reminded today how far Chrissy has come since she was first admitted in January 2010. We still have blips (xmas!) & there is still lots more work to be done but we are seeing light at the end of the tunnel. Chrissy is coming back to us...