My Life with Autism: The Supermarket - by Debbie Pollard

Debbie, mum of Matthew, aged 10, kindly agreed to guest post for me this week.


Matthew

When those of us who have autism in our families venture outside it can feel like walking through a minefield. We are only too aware of the danger. We just don't know exactly what will cause the explosion. One wrong step: BOOM!

The constant scrutiny is incidental.

Some of us feel like we are on exhibition every time we leave the house. Always on the brink of becoming some sort of grim public entertainment. There's always someone further down the food chain to feel superior to. Who needs Jeremy Kyle?

Matthew and I head for the front. Today we will enter the hostile territory of the supermarket. A logistical failure has left us without vital supplies. We are lucky enough to get a space in the relative safety of a disabled bay – our journey into the shop should present minimal risk.

Already we are attracting some interest. Well, I have parked in a disabled space and both of us can clearly walk.

Tut-tut. Blue badge nothing. She's no right parking there.

Eyes down. Focus on Matthew. I'm not ready for a staring match and I'm saving my energy for when I most need it.

In we go. I grab a basket as we pass. I don't need a trolley. We won't be buying much and, besides, I can't push a trolley and keep hold of Matthew at the same time. I know he will run, scream or lie down. But when? Where? Why? Well, I'll know when it happens.

We're in. Basket in my left hand, Matthews hand in my right. He's jumping up and down, making noises. His hood is up, providing a little sensory protection.

Why's she letting him do that?

“TOILET”.

It's the three minute warning. Matthew may need the toilet. It may just be a tactic to get away from this environment he has found himself in. This environment that I have brought him into. Either way, the toilet is the next place we are headed.

The disabled toilet is occupied.

“TOILET! TOILET!! TOILET!!!”

Heads whip round.

What a racket. Why doesn't she shush him?

Can a head really turn that fast without doing it's owner an injury? If rubbernecking ever becomes an Olympic sport, Team GB is a shoe-in for gold. Matthew is becoming increasingly agitated. How did it get so hot in here? Sweat trickles down the back of my neck. Ladies it is. We're going in, and it might not be pretty.

Horrible blueish lights in here. To stop people injecting drugs by making their veins hard to see? Energy saving? Just because someone liked them? It doesn't really matter.

Now Matthew's hands are clamped to his ears.

What's that laddie doing? He's too big: should be in the gents.

“DRYER”

“No, it's OK, no-one is using the dryer, on we go”

“DRYER”

“No, it's OK......”

Hand dryers are scary. An assault on the senses. The air pressure changes. Any bits of fluff or paper on the floor are flung around by the turbulence. Lets just hope we can get through this without one going off.

We're in, we are out. Hands washed.

“No, it's OK, Matthew, I'm not going to use the dryer”

He takes no chances though. He's been here before. Experience makes him cautious. Hands over ears, one arm linked through mine, we make our way back into the shop. I'm bent over sideways. Do we look strange? I'm sure we do. I know I'm being watched but I've got work to do.

“Good boy, Matthew, it's OK, we're back in the shop, dryer is gone”

Eh? Why doesn't she just make him walk properly?

Shelves and shelves of things to eat and play with. Trolleys and people coming from every direction. Giant freezers hum. A hundred beeps per minute from the scanners, all slightly out of sync. Chatter. Children crying. Dishes clattering and the faintly unpleasant odour of everything with chips being prepared in the café.

We head deep into the shop. It was cold near the freezers but now it's so hot. Milk. Far from the doors. Deeper and deeper. Avoid the sweetie aisle for now. To throw us, the supermarket changes it's layout now and then. I'm sharp enough to take avoiding action when necessary. Almost there. We're here. Basket on the floor. Matthew by the hand. One, two cartons into the basket. Matthew has held up well so far. Time for him to choose a treat.

I relax a little. Rookie error. Matthew slips his hand from mine and he's off. He has carried out his own visual sweep of his surroundings and spotted something I've missed. He's on it like heat-seeking missile. Packets of sweets at the end of an aisle. Of course. A well known tactic of the supermarket. How could I have forgotten? I thought we were relatively safe.

Some people just can't control their children.

Snap decision. Drop the basket and run? Just run? I choose the latter – damage limitation is all I can do now and keeping hold of the goods will make our escape a little quicker. He's at the sweets. Two packets ripped from their hooks.

Check her running in those boots

Trainers! Kit error. Still, I've caught up with Matthew. To be more accurate he has ripped open a packet of sweets and has stopped to eat them. That packet will be written off. I'll take the empty wrapper to be scanned. There's a chance for the other packet though.

“Matthew, give Mum the sweets”

“Sorry” (a word Matthew uses when anxious or unwilling to co-operate)
I only fight battles that I might win. We could carry on this wee stand off all morning. Or at least until the sweets are all gone. It could escalate until Matthew is lying on the floor screaming and I am on the verge of tears. Nothing can be achieved here.

I don't believe it – she's just letting him keep the sweets. No wonder he's so badly behaved!

Plan A was for Matthew to chose a treat. Well he has chosen it. Plan B. Quickly to the nearest or quietest check out. Avoid the ones with eye-level sweets to tempt Matthew. Damn ingenious supermarket. But at least in this one there are actually some check-outs that are sweet-free. Others are more ruthless and we're not ready to tackle those yet.

Empty check-out. I'm so, so glad. I can see the exit. Milk on the conveyor, Matthew's hand still in mine. He'll not try to give me he slip again – he knows I'm back on full alert. And, anyway, he is contentedly munching his sweets.

“Are you enjoying them sweets? Not talking son?”

Ignorant. And look at her. A smile would crack her face.

“Enjoy the rest of your day!”

“Thank you. You too.”

Got the milk. Got Matthew by the hand. The doors are getting closer. Fresh air, I can almost smell it. Out in the open. Daylight. I can see the car. Safely inside. Engine on. And breathe!

Until next time.


Debbie & Matthew

Debbie wrote this post for Act Now For Autism, formerly known as ACT NOW (Autism Campaigners Together). Act Now For Autism http://autismcampaigners.blogspot.co.uk/ is a core group of people passionate about the future and well-being of children and adults with an Autistic Spectrum Disorder in the UK. Act Now For Autism are campaigning against aspects of Welfare Reform, specifically face-to-face assessments and the Work Programme. They are ardently campaigning for advocacy to be offered to anyone who has to attend a benefit assessment.


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

The Holiday where I Took a Stand: Valuing Lives of Adults with Learning Disabilities

Chemically coshed?

We set off for Center Parcs, Longleat, with trepidation and a back-up plan. Our last holiday with Chrissy had taken place over four years ago, and it hadn't gone well. At least Longleat is only an hour or so from our home and the ATU. If it all went belly-up we had the option of taking Chrissy back....

On the first day Chrissy’s behaviour can only be described as ‘monstrous!’ She roared and barked endless demands that we could never satisfy. Her appetite was insatiable too. We ate at Café Rouge as soon as we arrived but the minute Chrissy had cleared her plate, she began obsessing about food again. These behaviours continued at the villa and escalated to outbursts with the usual thrashing around on the floor. Thankfully, the episodes were short-lived and in our own space we could let her get on with it.

‘I’ll never do this again,’ Ian muttered darkly. Eventually, Chrissy sat down with us, but we were still jumpy and tense with her and each other, wondering if we'd made a big mistake to bring her there. Then I heard a soft giggle beside me. When I turned round, Chrissy was smiling and pointing at the objects of her amusement – my feet on the coffee table wiggling in time to music on TV. My heart melted. People with autism rarely gesture or point at objects to communicate. Chrissy has started doing this very occasionally, and they are special moments.

The next morning she played up while taking her meds and I had to try again later with her antipsychotic, Quetiapine, and her fish oil supplement. Within around half an hour she looked so drowsy I thought she was going to have a seizure. Here, with more time on my hands, I was able to observe Chrissy more closely & objectively than I do at home. In previous posts I've described my concerns about the clinical need for her to be on Quetiapine or indeed any antipsychotic. I bring it up at every care planning meeting but it never seems to be the right time to trial Chrissy off it - her doctors want to stabilise her epilepsy first (yet antipsychotics lower seizure threshold!) or they want to wait for a more settled period or wait for the next specialist appointment etc. The ATU halved her dose in error several months ago and noted improvements in her behaviour - so why is she still on it nearly three years after I first expressed concerns?

Once we got to Longleat Chrissy kept whingeing, nagging about food, and sitting down and refusing to move on. Just after we entered the African Village, she body-swerved back to a sweet shop we’d passed & surfed the displays for Maltesers.

They’d run out.

Cue Chrissy to throw herself on the floor, where she stayed for around 15 minutes. She lay there quietly, only shrieking when we tried to talk to her or get her back up on her feet. We stood there like lemons until, finally, she got up and selected a pack of fun-sized Kit-Kats that shared the closest resemblance to Maltesers. With the sweets secured in her coat pocket, we were able to continue on our way.

We got stuck again by the meerkats – the first animals we came to. Unlike most people, Chrissy wasn’t impressed by their antics even when six of the endearing creatures stood upright in unison. We accepted that we would be operating on ‘Chrissy-time’ that day. Next, she made a bee-line for Postman Pat Village then plonked herself down on the ground again and threw my sunglasses, which she’d been wearing, to the ground. As so often happens, just as you want to wring her neck Chrissy's mood about-turns. She agreed to a photo opportunity with Postman Pat and was charmed by the inanimate model. It engaged her attention more than any of the animals we’d seen.



On the way to the game park, we stopped at the toilets. Chrissy started shrieking and shouting on the loo and sent the sanitary disposal unit crashing to the floor. We emerged to curious stares then she flung herself to the ground again as a group of school kids filed by, eyeing her warily. Chrissy didn’t react to their presence. As usual, she got up when she was ready and we set off on the drive-through safari. Clutching her empty paper Coca-Cola cup and bag of Kit-Kats like talismans she seemed content enough but showed no interest in the animals.



Wednesday was a better day - we got Chrissy into the pool & spent an hour or so there - but the biggest blip of the holiday occurred that evening at the Pancake House. They had a children’s entertainer on and refused entry to anyone that hadn’t pre-booked. I tried my best to persuade them, but to no avail. Needless to say Chrissy kicked off right outside in full view of the diners. The manager rushed out with a complimentary all-singing-all-dancing pancake, the sight of which sent Chrissy into orbit. She threw herself on the ground screaming, thrashing around and banging her head. To further fan the flames, a man who’d been sitting outside drinking tried to step into her world. He lay down on the ground beside Chrissy and started talking to her. ‘I work with kids like this,’ he slurred to us. ‘They're so lovely.....’

Chrissy smacked him in the face!

I explained that we have to pretend Chrissy is invisible when she goes into these states as any eye contact or attempts to communicate makes things worse. She has to be left to come out of it on her own. The man’s daughter came outside with his grandchild. Gradually, Chrissy became aware that there was a baby nearby and sat up. It was a rapid mood switch even for Chrissy. ‘Is it a baby?’ she twinkled. ‘Can I stroke her?’ We watched nervously as Chrissy softly caressed the baby’s back and chatted away, asking questions like: ‘What’s your name baby?’ It was a stark contrast to the violence of her outburst, and I was pleased for Chrissy that this family had seen her at her best. It was interesting that Chrissy asked the baby: 'Have you stopped crying now? Were you cross?' (signing the word for cross) Ian and I both think that Chrissy was talking about herself in a third-person kind of way.

Chrissy then plonked herself down between us and tucked into her pancake, chatting and giggling with the man, who was definitely the worse for wear but harmless. He kept Chrissy entertained, pretending to nick her food and joking about taking her on a date. After we left Chrissy couldn't stop talking about her new 'friend.' The experience had been quite surreal - but what a happy ending!

Thursday was better still. We managed to get Chrissy on a trike. She let us push her around but didn’t pedal or steer it herself. She used to race around on her own trike but her mobility has decreased with age – she struggles to climb on and off things, and has lost agility, skills and confidence. This deterioration also coincides with her weight increase since the introduction of antipsychotic drugs.....I hasten to add here that the sweets she gets are carefully rationed & the cokes are diet &, where possible, caffeine free, diluted with water. It's about what the packaging represents. Although Chrissy loves to eat she can happily hold on to her favourite branded food items for days.



Later on we transferred our holiday photos to Chrissy’s laptop. She sat entranced flicking through them. Her mood got better and better. We went for an early evening stroll – she walked a total of around two miles that day. Later, she watched the Bear and Father Christmas instead of sticking rigidly to her Snowman DVD. As she watched Father Christmas, she smiled over at us while excitedly tapping his picture on her DVD cover to show they matched. It was a lovely last evening.



The next day Chrissy woke up to an empty villa – everything had been packed away. It struck me that it was like the end of the Snowman DVD where all that remained of the night's magic was his hat & scarf. Chrissy reacted well considering - no nagging for food, and quite compliant given that we had to rush her out of the villa by 10am - but we could tell she was bewildered and disorientated. I felt a huge sense of desolation for her that grew as we drove back to the ATU. The villa had become home. She'd had her favourite things around her, & now they were all gone until her next visit home.

At the ATU she asked for her laptop again. Unfortunately we’ve never been able to get them to agree to keep it there – nowhere safe to store it we’re told. It seems harsh to deny her one of the few things she loves to play with but she has a toy laptop there that’s become another favourite activity. Hoping to distract her, I asked a nurse where it was. She looked at me blankly. I kept on until someone went to search for it and eventually brought it out to us without batteries. How long had it been stored away out of Chrissy's sight because it couldn't be used? Why hadn’t anyone thought to tell us or use her pocket money to buy more batteries? She gets attached to treasured objects like this & has so few of them there. I find this sort of thing beyond upsetting. It symbolises something that I can't bear to think about, let alone put into words for a blog.

While we were unpacking later at home, I couldn't stem a sudden flood of tears. It felt like grief....

Our holiday had highlighted how life is passing Chrissy by while we wait interminably for actions to be taken that will move things forward. A care planning meeting that I'd hoped would lead to progress with some of these actions was postponed by SEVEN weeks because key professionals were on holiday, only worked on certain days or were attending training days. The upshot of it all is that I decided to take the lead on something that has been dragging on for far too long. It could get me into hot water but it's worth it if the end justifies the means....


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

Living without a Diagnosis

I wrote this piece for Women's Realm when Chrissy was 12....

Chrissy is mad about music. Last summer the whole family went to our local fete in Hemel Hempstead where a brass band was playing. Before I knew it, Chrissy had barged past the conductor and was conducting the band herself! Fortunately the musicians found it highly amusing.

This eccentric, endearing behaviour is typical of Chrissy, who finds it impossible not to start dancing if we go into a shop with background muusic. She has moderate to severe learning disabilities but I don't know the exact nature of her problems. I've never been told what to expect from her in the future, and, hardest of all for me to come to terms with is the fact that she's never had a diagnosis.

I've battled through some tough years and I know there'll be more obstacles ahead, but I've learned to enjoy Chrissy's cheerful, funny manner and to live with her violent tantrums and obsessive behaviour.

When Chrissy was born, 10 days late, there was no indication that anything was wrong. My husband and I were thrilled with our first-born. We used to call her our 'air-traffic controller' because she waved her arms so vigorously.

The first signs that something might be wrong were feeding difficulties, poor weight gain and a general floppiness. Because I was an inexperienced first-time mum, I wasn't sure what was 'normal,' but I gradually realised that something wasn't right. I was gripped by a terrible anxiety and would be awake at night wondering what it could be. Every time I talked to my husband about it, we argued, and he made me feel that I was wishing problems on Chrissy. My mum agreed that something might be wrong, though she said my sister, brother and I were all late developers. My brother didn't walk until he was 18 months old and went on to read history at Oxford University!

When I look back over the early, bewildering times, I wonder if I would have enjoyed Chrissy more if I had expected less of her. I spent ages coaxing her to do what other babies did naturally - to reach out and touch a toy, or eat something. I couldn't help comparing her to other babies around the same age who were larger and more forward than her.

After a health visitor noticed Chrissy's poor head control, she was referred to a paediatrician. By then she'd started to have epileptic seizures so she was sent for a brain scan. We were told it was normal and that Chrissy was a delayed developer. When I asked questions I felt that I was being dismissed as a neurotic first-time mum.

Whenever Chrissy was admitted to hospital with her uncontrollable seizures, I'd sneak a look at her notes, wondering if they contained clues as to what doctors suspected was wrong. I remember reading one note by Chrissy's paediatrician: 'Mrs Gregory came to see me, worried as usual. Asked again if her daughter was handicapped.'

I went through a sort of grieving process. Sometimes I felt angry; at other times I would cry myself to sleep. I began to read books to try to diagnose Chrissy myself. I read one book about a family coming to terms with having a baby with Down's Syndrome, and began to think how different it must feel to have a label given to your child early on - but then I realised that many children with recognised syndromes don't follow a guaranteed pattern of development. Some children with Down's Syndrome have profound learning disabilities with life-limiting health problems while others are very able and healthy. It was some comfort to learn that, for about 40 per cent of children with learning disabilities there is no known cause or name for their set of symptoms.

After much persistence on my part, Chrissy was referred to the Great Ormond Street Genetics Clinic when she was nearly two. The geneticists tried to answer every question I had and gave the impression that they had all the time in the world for us. Every inch of Chrissy's body was examined, and all abnormalities, such as her weak muscle tone and short stature, were logged into a central computer to see if they were indicative of a certain genetic condition.

Two syndromes were suggested as possibilities but chromosome tests were needed. I looked through medical books and couldn't see how her particular characteristics fitted either syndrome and, in due course, we were were told that Chrissy's chromosomes were normal.

My search for answers continued. We were seen about every four years at the genetics clinic. One geneticist thought Chrissy was similar to children he'd seen with something called Smith-Magenis Syndrome. When I read more about these children I thought I'd finally found out what was wrong - Chrissy shared so many similarities with them, such as prolonged periods of distress and her way of flapping and clasping her hands in a strange manner - but the tests showed that Chrissy didn't have the characteristic deletion on a chromosome that's associated with Smith-Magenis Syndrome.

At this point, I stopped searching for answers. I saw how fruitless it was to be so fixated on the idea of a diagnosis - after all, we'd already learned to accept Chrissy's problems and love her as she is.

Our day-to-day life can sometimes be fraught. It's difficult for us to go out as a family because Chrissy finds new environments unsettling. Sometimes I dread taking her out on a routine outing - say to buy her new shoes - because her behaviour can be so unpredictable, and her siblings get upset when Chrissy barges into their rooms uninvited or breaks their possessions. As she grows older her outbursts become more difficult to manage. She still has prolonged periods of distress with no apparent cause. We call them her 'screamings' and they can last for over two hours. Sometimes she'll have two or three in one day and will deliberately harm herself. No one can tell me why she behaves like this and, although I've dealt with them for years, they still upset me.

Yet, despite the challenges Chrissy's brought us, she has shown us a unique way of looking at the world. I love it when I see Chrissy sitting with Alex or Jamie, singing along to music tapes, or when she copies people's facial expressions or says something to make us laugh. Whatever her problems, we're very lucky to have Chrissy as part of our family.



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

Good Care Planning & Changing Needs

'Hooray!!!'

We managed a walk to the village shop yesterday:-) There were a few hairy moments when we got there as Chrissy was like the proverbial kid in a sweet shop & got paralysed with indecision, then wanted everything in sight. Giving her a basket to put her goodies in reduced her anxiety (once she'd made it 'symmetrical' by re-arranging the handles). As we got near home I praised her for being a 'good lady' &, as you can see from the photo, she cheered!

I'd been inspired to take Chrissy out again after being told at her CPA (Care Planning Approach) meeting yesterday morning that her carers had taken her to M&S & a couple of other places without any major dramas.

Chrissy has two CPAs a year where the professionals and I sit around a table to discuss and plan her future care needs. Anyone with a range of complex needs like Chrissy's is entitled to have a care plan that's regularly assessed and reviewed. At the meeting everyone agreed that since recent drug changes Chrissy remains much more alert and interested in engaging with activities. The downside of this 'awakening' is that her outbursts are more violent, and she has hit staff and pushed tables over. We haven't seen this degree of aggression at home but she's more diva-ish than ever with a steely determination to get her own way. Last night she refused to go to bed until the early hours. There's no point in trying to force the issue so we turned all the downstairs lights off & left her to it. She soon came up and said 'you put me to bed,' but when we tried, she got caught up in her rituals, moving things around in her room so surfaces were clear and certain items, like her cover, were symmetrical. She kicked off several times but we got there in the end. We had the same rituals this morning at breakfast time. It tried my patience so much that I wanted to throttle her but Ian was amazing with her, & managed to de-escalate several potentially explosive situations by keeping calm and, somehow, just knowing exactly what to say & do at the right moment.

We still have some way to go before Chrissy is stable enough to leave the assessment and treatment unit and I still feel no clearer about what sort of home setup will suit her best. Now she is more alert her needs are changing and we need to look at a range of options. Cluster homes were suggested, which means that Chrissy would have her own space but be able to socialise when she chose. The commissioners can invite tenders from service providers, and we can be part of the interview and selection process. Right now, this seems to be the best way forward but we will have to see what can be provided locally.

I had been feeling very frustrated over how slowly things seemed to be moving, & the feeling that I'd had to drive every step forward, as described in previous blogs - but there's nothing like getting round a table to thrash things out with someone taking a strong lead - in this case Chrissy's impressive new psychiatrist.


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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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Special Saturday - What I'm thankful for

When Chrissy was little I spotted an ad in my local newspaper inviting mums of children with special needs to get together for regular meet-ups in each others' houses. I grabbed the opportunity like a lifeline and am still in touch with some of the parents I met there. Sadly, over the years some of our children have passed away. When I’m in despair about Chrissy I try to remember how lucky I am that I still have my child. Chrissy is physically healthier than many children with rare chromosome disorders.

We're also very fortunate to have supportive, loving family and friends - and Chrissy’s step-dad of 20 years is our rock.

Another thing I'm grateful for is to have the opportunity to write about what interests me and get paid for it – many of my magazine and newspaper stories are learning disability or health related.

I’m thankful that we weren't born in another time or place where Chrissy would have been ostracised and probably wouldn't have survived childhood. The excellent Channel 4 documentary 'The Queen's Hidden Cousins' http://www.channel4.com/programmes/the-queens-hidden-cousins/4od was a stark reminder of how appallingly people with learning disabilities were treated until very recently.

I also have to remind myself how far we've come as a family. When Chrissy was five I separated from my three children's dad, & lost everything. To cut a long story very short, I ended up homeless & was terrified of getting stuck in a hostel with Chrissy disturbing everyone with her screaming episodes. Thankfully I was housed by the council just before I had to give up my marital home. I was getting no support with Chrissy from outside services & my wider family were also dealing with my dad's premature Alzheimer's. I had no idea that respite care and social workers existed to help families like ours - until I had a breakdown. It was the lowest time of my life.

Back then if I could have peeked into the future and seen how much better our lives are now it would have seemed like a fairytale!


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