Autism the, “Fashionable”, Disability?

The choiceless indoctrination of “special needs” and acceptance of the new journey has been and still is an only going process.

Throughout you meet a number of families facing similar battles to you.

Battles for services, mountains of paper work, tireless days and nights filled with fear filled appointments and therapies, lack of sleep – the list goes on…

You don’t necessarily meet people who have the same condition as your child- however they may share some of the same struggles.

I have met a great many families who have a child with Autism.

In fact in my daughter’s school I would estimate 95% of the population have Autism.

So you can probably understand why I sometimes feel out numbered.

For a marginalised part of society I can sometimes feel even more different for not having a child with Autism.

Autism is very topical this year with documentaries such as ‘Richard and Jaco: Life with Autism’ highlighting it, drama series like ‘The A word’ created around it and characters appearing in soaps like Holby City with it.

Online in the world of blogging there are huge numbers of blogs highlighting the varying highs and lows of living with or raising a child with it.

I started to feel a bit jealous.

Isn’t that ridiculous?

I wished that the spotlight was on Chromosome 18q-, my daughter’s condition. I selfishly wished people had heard of it.

That shows were being created around it so family/friends/strangers would become a bit more aware and more accepting.

I started to wish we had an awareness month, where people would change their filters on Facebook in support.

I wished the BBC would contact me and ask me what it was like raising a child with a rare condition- let me speak about the lack of information and awareness you get from doctors about it.

I wished there was chromosome 18q- intervention service and local support groups.

I wish I could meet others who were grown up and living successfully with their condition.

I wish I had friends walking a path very similar to mine who could share their own journeys and bridge the gap between feeling like I’m on an abnormal journey.

Autism almost seemed like the more known, accepted or, ‘fashionable’, thing.

However although my green eyed monster had reared its head I pondered the battles the children with Autism have to face as well as their families.

The discrimination, the judgmental stares, lack of understanding, aloof family and friends and it became much clearer to me.

We might not have the same label but we had very similar experiences.

A win for them was a win for us.

People understanding why my daughter might suddenly cry or become agitated may now be looked at with a little more empathy knowing that some children have melt downs.

People understanding that a disability can be hidden and is not just people in a wheelchair may stop the stares I get when I drive into a disabled space.

Not all disabilities are immediately obvious.

If the blogs, the documentaries, the shows all continues to educate and inform others it will make life better for many who have Autism and other disabilities.

If people start to understand that there is nothing “wrong” with them and that they are in fact blessings who learn things differently and actually teach us to be different better parents.

Then I am okay with Autism being the ‘fashionable’ Disability and taking the much needed lead in raising the necessary awareness around difference and disabilities.

Special Needs Parenting: When She’s Not There

If you’re anything like me you’ll be rushed off your feet the vast majority of the time.

Not just day to day stuff but special needs mum stuff i.e. ordering meds, making up tube feeds, cleaning syringes, ensuring you get her in her standing frame at least for 30 minutes, making phone calls, arranging for equipment to be adjusted, on errands to and from speech and language, orthotics and so on.

It really is never ending and even when you think you are up to date you realise – have we done tummy time this week?

Have we done any bench sitting?

You can fill your entire day trying to balance things you know you have to do, and also things that are fun and, “normal”, to do with your child such as feed ducks or visit the park.

So it’s only natural to be desperate for, “me time”. I’m not even really sure what that is.

As soon as Amy isn’t with me I launch further in to my world of chores – the ones that are harder to do when she’s there as she so often seeks one on one attention.

Really, “respite time”, should be used for self-care and relaxation but lately it has mainly been characterised by me either feeling guilty that she isn’t with me and guilty that I am not out at a, “real”, job.

So to compensate I keep burning myself out on dog walks, house cleaning, washing and so on.

By the time I go to pick her up I can barely move.

I am then consumed with rage at myself for wasting time I should have spent being relaxed enough to meet her care needs by doing chores that really don’t HAVE TO be done.

Sometimes as a carer you wonder how other people like us are managing to work full time. I am in awe of them.

Not a moment seems to go unaccounted for in my day and there is always so much left to do for the next day.

When she goes to respite I know she is surrounded by well trained, friendly, amazing people who are dedicated to meeting her needs and making sure she is happy.

I love the thought of it and I love hearing what she has been up to.

I don’t want to need that time away, it still pains me and even a few years on feels slightly odd.

When she isn’t with me a huge part of me is missing.

I find myself leaving the supermarket almost saying out loud, “Right then, let’s go to mummy’s’ car”, and then of course realising that I am indeed fully alone hence my being able to carry so many bags.

It’s a bittersweet feeling when I drop her off.

I feel a combination of relief, guilt, sorrow, calm, and panic.

I saw a post online recently about a man with cerebral palsy and how every year he has to have his 24 hour care needs re-assessed.

It enraged me to think that this man was having to justify what is not ever going to change.

Surely if at any point he didn’t need the care he would say.

It is very sad to think he has to fight like this and it shouldn’t be this way.

I am sure like me he would prefer not to need help but is incredibly grateful of it and finds it to be an essential lifeline.

It made me wonder about the future. Will she always be with us? Will I still be a carer in my mid-60s?

I cannot imagine her without me ever.

I think I need her as much as she needs me and even though we face many challenges I know that at the end of a respite day she is still with me.

I wonder if she did ever live independently would she have 24 hour care that needs to be fought for and would she have the communication skills to convey her needs. Or will she need me there for that?

It makes me start to panic about my own mortality and what would happen if I weren’t here.

Obviously she has her dad too and various other close relatives and friends but it is a scary thought – one that creeps into my mind when she isn’t with me and my brain is permitted to get lost in thought a little more.

I wonder what other people like me do on days their child is at school or respite.

I am no way near in a position to look for work again yet, but I do find the lack of purpose sometimes eats away at me and I wish I were once again working in a busy office with adult conversation and coffee machines earning money and feeling independent.

I hadn’t realised quite how lonely it can be. My anxiety has really peaked recently.

It has coincided with having to sell our house and move into a rental so that we can have the adaptations Amy needs.

I keep telling myself that once all of this is over that I’ll be okay again and be able to focus more on my breathing technique and meditation and work on reducing my panic attacks… but am I kidding myself?

I’d love to hear more about what everyone else does to keep themselves grounded and keeps their sense of identity going?

I so often begin a phone call with, “Hi, it’s Amy’s mum,” and by doing this I am further reinforcing my own lack of identity or importance.

I used to hold my individualism with a high regard and I can feel myself losing who I am and what I am interested in.

So I guess, at the moment, when she isn’t there… neither am I.

Does anyone else feel the same?

Special Needs Parenting: Ambushed

Today is one of the dark days that special needs parents are occasionally heard to mention.

When putting on the ‘I’m fine’ face is just too much effort.

It’s been a busy few weeks; Sam’s neurodevelopmental reassessment in Devon coincided with me developing a frightening case of cellulitis (Sam’s Dad now thinks I’m just allergic to driving all that way).

Just as we thought I was all better a horse fly bite to the thigh was all it took to reignite the flames and set the infection back off again.

The hot weather, while glorious, is damnation for seizures and my poor little man has been thrown about something awful by them. He’s not sleeping well, which equates to US not sleeping at all.

I am tired to my very core, my bones ache, and today was wheelchair clinic.

Our first visit since the service changed from NHS to privately run.

I needn’t have worried, it was the same staff who’ve known us since Sam was tiny and in a mainstream pram, before the days of SN pushchairs and supportive seats.

It always twists the knife a tiny bit, remembering how things were before the extent of his issues were known, when we could just enjoy the early days of being new parents with our perfect little boy.

Before our lives imploded.

The staff are wonderful, they’ve seen it all before… the reluctance to accept a recommended chair because it’s too ‘wheelchair-like’, the sadness on the parents faces as they slowly come to accept their new normality.

I often think I’ve reached a point of acceptance with the hand of cards we’ve been dealt; most days I’m more than happy with my life, with my wonderful little boy and seeing how much progress he’s making.

Then days like today seem to ambush me from the shadows, and it’s all just too much to fathom.

Like all my friends in the SN world, today it’s all I can do to muddle through to bedtime, then collapse under the weight of it all.

To all those struggling, I see you.

And even though today I’m struggling to believe it myself, it really will be OK.

Special Needs Campaign: Help Us Save Our Local Respite Centre

Nascot Lawn is a respite centre in Watford and currently provides respite to the most medically complex children in Hertfordshire.

As parents we have been informed that Herts 3 valleys CCG have ceased their funding, with Nascot Lawn set to close on 31st October 2017.

As you can imagine we are devastated. There is no other option for overnight/weekend respite for our Children in county, due to the complexity of care they require.

This decision will be the breaking point for most families who are already hanging on by a short thread – including my own.

My son has recently been discharged from Great Ormond St after major bowel surgery and is requiring 24 hour care around the clock.

My continuing care package does not meet my sons ever growing needs and we were relying on our allocated nights at Nascot Lawn to enable Lennon to stay at home with us.

Without the support of Nascot Lawn we may be forced to put Lennon into care as we will not be able cope.

As a Carer providing 24 hour high dependency, round the clock care to my son I get paid 37 pence per hour.

Most nights are waking nights, or spent getting up every other hour.

I have been told If we put lennon into care it would cost on average of £750 per day! (Mainly because his medical care is so complex.)

I’m a nurse for 24 hours a day 7 days a week, would that be allowed in any hospital??!

Even when my my son is in hospital I am still providing him with all the medical care he needs.

I don’t get a break as I’m not allowed to leave him alone on the ward in the care of the nursing team as he is too complex.

Yet I have no nursing or medical degree or training.

I am responsible for a severely Autistic child who cannot walk, self harms, has no sense of danger and understands nothing.

A gastrostomy, a jejunostomy, an ileostomy, a 24 hour feed, making up extra fluids, a ton of medications including controlled drugs and injections, strict fluid input and output measuring and charting, seizure management, restraining and suctioning, and deciding what is a medical emergency and what isn’t.

Ordering in and managing supplies from 6 different companies.

I have to remember appointments, deal with professionals, fill out untold amount of forms, attend meetings.

I also have to be my child’s eyes, ears and communication aid. He communicates through me.

I have to be on the top of my game always. I cannot take my eye of the ball ever, not for one second.

How can I do that safely with no overnight respite care out of the house? No weekends off.

Tiredness causes accidents, sometimes fatal accidents.

I have 2 other children who also deserve my time, and to have weekends where they get to live a ‘normal’ life – go to the cinema, bowling, swimming and out for dinner.

All of which we cannot do with Lennon.

We cannot take Lennon on holiday – he sleeps in a 6ft high padded cot as he has no sense of danger and throws himself head first out of a normal bed.

So we used our Nascot Lawn nights to take our other children on much needed holidays.

Without Nascot Lawn they will go with out holidays – how do I explain all of this to them?!

Our house is effectively a high dependency unit and in all honesty I don’t think our family will be able to cope without Nascot Lawn, it puts a huge strain on the whole family.

Especially my relationship with my partner.

Without Nascot Lawn, we could be forced to put Lennon into care.

Please help us. We are desperate for a solution to this.

It is simply not fair on our children – who are the most needy and deserving children in the county.

Or on the Parents, who like us have given up their whole lives (careers, jobs, friends, holidays) to care for their children.

3 weeks ago we started to campaign to Save NHS Nascot Lawn.

We currently have a Facebook page, twitter account, and a petition with 13,000+ signatures.

We have news reports on BBC London news, ITV London news and channel 5 news.

BBC 3 counties radio have featured us in a number of their shows, and I have recently done an interview for Heart radio.

The Watford Observer, the Herts Advertiser and the Hillingdon times have also run stories around the impeding closure.

Please help us fight for Nascot Lawn, our children need us.

Special Needs Families: 4 Accessible Places to have a, “Stay-Cation”, this Summer

But when you have a child with special needs, it can be difficult (but not impossible) to go abroad so here are 4 ideas for a summer, “stay-cation”, to allow you to get away without having to renew your passport or worry about going on a plane.

All have been recommended by other families but I have not tried any of them personally…YET!!

Ellwood Cottages

Located in the heart of beautiful rural Dorset in the peaceful hamlet of Woolland, Ellwood Cottages are outstanding conversions of three traditionally built barns, in a courtyard setting.

Everywhere is fully wheelchair accessible, there are no steps and all doors have a 760mm clear opening.

All showers are wet-room style, kitchens have accessible hob and sink with front controls worktops are all wheelchair accessible.

Adjacent to the cottages, is a heated indoor splash-pool and next door is a therapy room, where visiting therapists offer ‘pure-pampering’.

Mobile hoists are available for guests, along with wheeled shower chairs, shower-chair commodes, high back chairs with arms, bed height raisers, toilet seat raisers etc.

It sounds like they’ve thought of everything but other more specialist equipment can be hired from a local supplier, contact Ellwood Cottages to find out more.

The Harriet Davis Trust

The Harriet Davis seaside holiday trust for disabled children provides 3 economically priced, self-catering holiday houses in Pembrokeshire, for families with disabled children.

A 4th house is adapted for children with autism and other learning difficulties.

One of the houses is just minutes from the local beach while another offers an indoor heated swimming pool with a hoist and all the houses have the equipment you’d expect including hoists.

These houses are primarily available for families with disabled children but, depending on availability, can be booked by disabled adults as well.

Click here to find out more.

Tudor Lodges

If you fancy a visit to Cornwall, the Tudor Lodges look lovely.

They have 6 award-winning fully accessible lodges set in two acres of countryside.

Each lodge was designed to be fully accessible and sleeps up to six people.

They offer large level entry wheelchair accessible shower, electric profiling beds, electric hoists, riser chair, and shower chair, and other mobility aids are also available.

The Eden Project is only 30 minutes away.

Hayling Island

Hayling Island is lovely and there is lots to see and do locally too.

This static holiday home is ideal for guests with limited mobility, there is a wheelchair ramp available, all internal doorways are wider than standard doors and there is ample room inside for manoeuvring a wheelchair.

There is a wheel in wet room with grab rails and a wall mounted shower chair, however a wheeled shower chair is also available.

One of the bedrooms features an electric bed with an electric hoist.

The kitchen has been purpose designed with access for a wheelchair user with space underneath the sink and lowered units.

The Things We Resort to When There has been No Bench and Hoist

But with less than 1000 facilities in the UK providing this vital equipment, what happens when it isn’t available?

The consequences of not having this equipment is that people are usually faced with 4 options:

1) Lay on the toilet floor – only possible if they are not too heavy to lift.

2) Sit in their mess until they can go home to be changed – not always an option.

3) Medicate or with-hold fluids to ensure they won’t need the toilet – has dangerous health implications.

4) Don’t go out at all – this is becoming more and more common and families are becoming housebound.

We asked some families to tell us the worst places they’ve resorted to changing their children and young people when a space to change toilet hasn’t been available.

Kay “On the beach with my male cousin trying to shield her with a towel!! Not ideal as she was about 15 at the time”

Miriam “I took my son to an autism support group and was instructed to change my son in the changing room of the football park on a wooden bench littered with belongings from the football team!”

Kelly “On a table in first class on a train. Gave the business folk something to stare at over their sausages…”

Kirsty “My scariest experience was having to use a baby change because the floor was nasty – only to find that it was really wobbly/pulling down (probably worse because he was so long & not a baby – was within weight limit though – he 5years old & under 15kg!)

It came out lengthwise from the wall, not alongside it, so once he was on it, I had to stand on one leg, like a flamingo, & hold it up with my bent up leg, doing the fastest change ever!

Thank goodness it was only wet! I regretted starting it once I was almost done, but the only other option would have been outside somewhere in the cold!”

Wendy “On an office desk at our local NHS walk in centre!!”

Anon – “His old school changed him on a trampoline as there was nowhere else when they were at a local farm!”

Laura “On a shelf about12” wide in the baby changing area at Walt Disney World, possibly would have been suitable for a baby but my son was 7 at the time.

This shelf was offered to us by their staff and was in an open area with other families walking through so no privacy at all.

I had to hold him on the shelf so he didn’t fall off while my husband changed him”

Dougal “Back seat of hatchback (before we got WAV) in carpark of motorway services. Door open for access and snow on the ground, heater on full. Poor little guy was chattering his teeth.”

Jackie “On a stage in a village hall with me holding up a coat!”

Sam “In a plane seat somewhere over the Atlantic with 4 of us trying to hide him behind virgin blankets and two of us trying to heave him up to change him”

Jo “On a bench in Hyde park when my daughter was about 16, I was on my own so I couldn’t even offer her any privacy.

I cried throughout as people were walking by and staring.

I’ve never resorted to that since but that day I had no choice as I couldn’t leave her in an explosive nappy”

The saddest thing about these responses is that they are not surprising or rare, people across the UK are doing the same every day.

Sometimes even when the facilities are available, staff disability training is lacking and has resulted in people still resorting to the toilet floor.

Emma “On the floor of a baby changing room in a hospital because although they had a changing places toilet, I wasn’t allowed to use room with hoist as my son didn’t need the hoist”

The Sideline Mom

Trying to feed the crying baby, entertain the bored toddler, all while trying to give enough attention to the seeking pre-teen.

Whether you see her struggling at the restaurant, baseball game, or shopping mall; I am that sideline mom.

Growing up, I have always been a giver.

That was what I found joy in.

Giving to others whether the gift be tangible or sentimental, seeing the joy brought upon their faces was in return joyful for me.

Being a mother, I am constantly giving.

Even if I fail to see the joy in it 24-7, it does bring me the same happiness.

Alongside that happiness though, is frustration.

Selfishness.

The feeling of, “This isn’t fair.”

If it was appropriate for me to throw myself on the floor and cry sometimes, I would.

My family is a full carload of five people.

My husband and I, our nine year old Aaden, three year old Oliver and ten month old Theodore.

When we go out, we are always in group.

So me being the giver that I am, I always prefer dad to be the one to enjoy the activities with the kids, making the memories, building the relationships (that strong dad and son bond), while I tend to the needs of whichever child is being needy.

Even though I personally choose this (which sidenote, dad is great at offering me to go enjoy the activities while he child sits) I still get a little jealous.

I still get upset that whether it’s dad or me on the sideline, we both can’t enjoy the moment with all the kiddos.

If I chose to let dad take care of the kids while I go enjoy the activities, I still worry about if he is doing this or that the right way.

Thus, I end up choosing to just do the worrying and caring for.

Since Theodore is too young to enjoy most activities like the baseball games, or bowling, I will continue being the sideline mom until all of the kids are old enough.

Until then, if you see that struggling mom like myself on the sideline, just remember that we would very much rather be enjoying the activities like the rest of you all, but the role of a mom will always be needed and demanded.

(This is why we like our alone time for pedicures, hair salons, and even just a nap!)

Special Needs Parenting: Why Is She Doing This??

The first few years of Amy’s life was mainly characterised by inconsolable, un-explainable, chronic distress.

We got the usual unsolicited advice from anyone and everyone. “Babies cry… it’s what they do!” and so on.

Time and time again we would appear at our local hospital unable to cope with the level of upset Amy was exhibiting.

Back then it was largely attributed to reflux and on other occasions, muscle spasms. Reflux and muscle relaxant meds would be continually introduced, and doses increased up and up.

A year or so on from that we look back on those days and wonder how on earth we got through it.

I wanted to slap any person who told me, “It gets easier”, or, “It’s just a phase”, I thought we were different.

Fellow special needs parents on the forums would assure me that the crying does calm down and the sleep does improve sometimes. They were right, I was wrong.

Always a tough pill to swallow but I am glad they were right and I am here now telling anyone at the start of the journey – it never gets easy, but it does in fact get easier.

Either the child changes, or how you respond to the stressors in your life changes. You will become more resilient than you ever could imagine.

You may still need a high dose of anxiety medication, you may need respite time, you may need to walk off the stress and remind yourself over and over “breathe. Deep breaths. Count to ten.” but you’ll do it.

Why is she doing this however is still very much a sentence I find myself repeating to this day.

The reasons for crying have changed. We recently had a pediatric appointment and were told that a lot of Amy’s new behaviours require the assistance of the “learning disability behaviour team”.

This new issue doesn’t involve adding medications, it involves watching her behaviour and my response to it.

You see, every night at the moment and I mean EVERY night… we have a 1-3 hour long battle to get Amy to calm down.

From the moment you lift her to take her to her bed she starts hitting and kicking wildly in an attempt to make it known that she does not want to go to bed.

We have tried keeping her up later but we find the anger starts regardless and that the best place for her is the safety of her bed.

This has gone on now for a few months and her respite team agree that she is indeed lashing out with arms and legs and “attacking” whoever is caring for her.

I totally understand it from Amys’ point of view. A neurologically typical child her age may run away or start the “I’m thirsty, I’m hungry, I want a bath, I don’t want to go to bed” and so on.

But Amy doesn’t have this option. So her only way is to scream and thrash.

There have been nights I’ve stood outside her room doing the whole “controlled crying” thing. I’ve silently stood there weeping trying to keep it together.

No child should have to scream and cry themselves to sleep every night but unfortunately at the moment this is our reality.

Before my reasoning for her crying would be digestive issues, muscle spasms, neurological irritation, boredom and so many things.

This would appear to be an actual age appropriate toddler tantrum.

You’d think melatonin, baclofen and gabapentin would tire her out even more but she still manages to maintain the same level of rage for a good few hours. It is soul destroying.

Once asleep she looks an absolute angel, until midnight or 2am when she wakes up to cry again. “Why is she doing this?” I wonder to myself at 2am.

Closely followed by, “I wonder when her next overnight respite stay is!”

It concerns me sometimes that what if this age appropriate tantrum stage doesn’t get outgrown. What if this continues on into later life?

I have to hope that this new intervention from the behaviour team will teach me new ways to help her and all of us.

Is there anyone else out there wondering why is he/she doing this on a constant basis?

I think I spend the majority of my days trying to anticipate her wants and needs and gauge from her sounds and expressions what her feelings about it are.

We had a trip to the farm yesterday and she made it very clear that she didn’t want to sit and wait patiently like the other children. Why is she doing this I wondered.

Once she had her music on she calmed down a bit but it does make me sad that she can’t always enjoy things without constant background music.

However, I stand by my statement – in spite of all of this… it gets easier!

Breathe in, breathe out.

Awards and Conflicting Emotions

As a kid I remember counting down the days until those lovely long days of summer, as a parent I cringe at the knowledge that I have to somehow find/fund childcare for my profoundly disabled little chap for 6 weeks.

Excuse me please while I sigh, loudly.

We are incredibly lucky, Sam has funding from the Council for respite carers to come in and entertain him while I go to work and his Dad gets on with his jobs.

We get maybe three afternoons a week when a carer comes in, Sam looks forward to these visits so very much because for all his problems, he is a very normal little boy and he LOVES having people over to play – even though very often he doesn’t show it!

But before all that comes the awards season, and already my social media is filling up with posts from proud friends, sharing what their kids have done at school, who’s won which award, usually accompanied by photos of said beaming offspring showing off their certificates.

Trophies too, in some cases.

And we, too, will be attending Sam’s school awards ceremony…

Last year, he won best artist in the school and I have never been more proud.

At the same time sitting in the school hall with the other parents, waiting for our children to come in either in their wheelchairs, with walking frames, teaching assistants and teachers supporting them all the way… I don’t think I’ve been to one yet where anyone was left dry eyed.

It’s a bizarre mix of sheer, unrelenting pride that our children are overcoming obstacles that are just massive and we all know *just* how much effort that has taken on the part of child, parents and school.

But in amongst the tears of pride are the tears for what might have been.

Those catch in your throat a bit, choking you.

This isn’t what any of us were prepared for, this life.

It’s different and wonderful and excruciating and exhilarating all at once.

And that is *exhausting*.

I’ve learnt that it is possible to feel multiple conflicting emotions at the same time, each intense and battling for prime position.

And this time of year feels especially difficult some days.

But I will continue to revel in my boys achievements and to scream them from the highest point I can find, because he has earned them with blood sweat and tears.

And for all my heart is fractured, with each achievement that child makes, every tiny ounce of progress… those fractured parts are mended a little more.