Special Needs Parents: Accepting Change

I think we’re all a bit like that sometimes.

It is something that I am working on every day in my quest to become a better person and a better mum; and it is certainly something that is crucial when you’re a part of our special needs world.

I’ve learned the hard way that change is inevitable no matter how you fight it and that eventually you have to just bite the bullet and throw yourself in full throttle.

One of my biggest mental battles lately is accepting that I can no longer lift and carry Amy how I have been doing.

I’ve amazed myself with my own physical strength, but we are all human and I am doing myself some serious harm that in the long run will be debilitating.

Amy’s movements are dyskinetic meaning her tone moves up and down, she never stops moving, and her movements can be very unpredictable and sudden.

These sporadic movements can still now catch me off guard and require me to suddenly twist and contort myself to ensure her safety. I’d say I’m pretty good at it but it isn’t for the faint hearted.

Her weight itself isn’t huge, she’s only about 15kg, but she is relatively dead weight (hate that term!) in that she doesn’t fully support herself how an able bodied child her size would.

This is one of the things that causes me the most heartache. A trip to the park or a soft-play centre is becoming more and more challenging.

The determined and stubborn part of me wants to plough on and ensure Amy gets to experience these things for as long as she can. But the realist and sensible side of me is screaming out to stop over doing it.

I am looking into some slings that can be held by two people and we will be able to use these on slides and things. I am having to find more inventive ways to help Amy interact with the world.

She is a bit of an adrenaline junkie and loves nothing more than swinging, sliding and being thrown around. I want to be able to do those things for her for as long as she wants me to.

We’ve had a portable hoist in our house for about 5 months now and up until recently I’ve looked at it only with disdain.

I don’t want to need it. It is big, heavy, clunky… and unfortunately completely necessary.

I’ve suffered with a sore back now for a couple of years but have managed to stay away from the GP for the duration of this time. Until now.

The twinges and shooting pains become more frequent and eventually I felt as if my entire back was burning.

I kept checking my back in the mirror in sheer disbelief – surely my skin couldn’t possibly be this sore without there being any visible evidence?!

I tried to remedy it myself with painkillers and stretches in a feverish attempt to avoid professional medical attention. I was partially concerned I would be told to rest more and not lift which I know is unfeasible.

Making time for a GP appointment is a pain in itself. We spend so much time making and attending appointments for our children that sometimes we overlook and neglect our own needs.

In addition to this – If I’m not attending an appointment for Amy… I hardly want to spend my spare time forging extra appointments.

I remember as a child hearing people say; “At least I have my health” and inside I’d be thinking to myself “what a silly old people thing to say…”, but now I’m older (and questionably wiser), I absolutely agree.

Reluctantly, but also desperately, I made my GP appointment. She conducted a thorough examination.

She asked a lot of questions, tested my reflexes, made me perform some leg stretches and movements and even booked me in for a full medical review and did a sneaky flu jab.

Not only did she fully check me over, she enquired about my mental health and all sorts. She didn’t fob me off like I feared, she listened and paid attention. I was so grateful.

Her diagnosis? Spinal neuralgia.

It all made perfect sense now. That burning sensation – I wasn’t making it up! Nerve damage. My poor spine has been over exerted.

Stronger painkillers were prescribed, exercise sheets were provided, and a physio referral sent.

So now the hoist doesn’t seem all too bad. I have since used it four times. It is slowly getting easier.

I am very eager to have tracking put in on the ceiling as it is logistically and physically very awkward trying to manoeuvre both wheelchair and portable hoist on one small floor space.

The lessons here really are simple.

1. Change is inevitable. Sometimes it can be a tough pill to swallow but change can bring good.

For example Amy loves being hoisted. She is such a thrill seeker that she laughs her cheeky little head off every time she swings in the sling. I’ve already accepted a huge amount of change.

It doesn’t get easier, but at least I know to expect it.

2. Your health really is a gift. I wish I took better care of myself, I really do. If I suffer – Amy suffers.

I am no use to her with a broken back. I must get on top of this now and prevent it from getting worse. I know a lot of parents who have endured surgeries and all sorts from lifting and transferring their child.

Even with hoists the physical demand can be huge.

3. Don’t assume the doctor won’t care or understand! Our NHS is also a true gift.

I am very grateful that our healthcare system enabled me to see a professional on the same day and that I was able to afford and receive medication to help me for my ailment.

The waiting list for physio here is approximately 18 weeks… sure I could complain about that… but maybe by then I’ll be better and not need it… or I will gratefully attend and once again enjoy the benefits of our healthcare system.

4. If something isn’t right – Address it immediately.

The burning I felt on my back has made me unable to sleep for a few weeks now. The knock on effect of no sleep is horrendous.

I should have gone to the doctor long ago and sought the treatment I so desperately needed.

Special Needs Parenting: Raising a Perfectionist

So far she is doing well.

The problem is she is doing too well.

My autistic daughter is a perfectionist and it is throwing up all sorts of problems.

At home everything must be lined up ‘just right’.

That is her calming place and comfort and I have no issue with that even when it makes moving around the house like walking on a tight rope or navigating a cliff edge.

I absolutely love and embrace her autism and her need for order but school are now very worried about her need for everything to be perfect.

Her writing is the neatest in her whole class and while that is such a beautiful talent and skill it is also a problem when you spend so long forming the letters ‘just so’ that you hardly have time to complete the work.

She is now falling behind because she cannot write quickly or ignore a spelling error or forget capital letters and full stops.

Her presentation is so lovely but it is so clear that her pace is so far behind she has pages and pages of incomplete work.

How do you teach a perfectionist that, sometimes, it’s OK not to be perfect because it is holding you back?

Her jotters were full of ticks but at times I noticed there were missing answers on tests.

I asked the teacher why she thought this was and we both knew right away that unless she was one hundred percent convinced her answer was correct my daughter would just chose not to answer.

She cannot cope with the thought of an ‘x’ in her work from her teacher.

The problem with this is we learn through our mistakes and there is no way she will be able to avoid confrontation or corrections all her life so we need to work together to help her cope when everything is not always perfect.

That is a challenge.

I came out of parent’s night so proud of my little girl. To have huge issues with anxiety and be diagnosed on the autism spectrum yet cope everyday with mainstream school is incredible.

I was truly in awe at her art work, writing and presentation and the time and care she puts into everything she puts her hand to.

Her teachers had such positive comments to say about her yet we both agree we need to help her overcome her fear of not being perfect.

No-one is perfect. Sure some people are extremely gifted and talented in some areas such as painting or sport or foreign languages but not one of us are perfect.

Life is never perfect either. Things break, food burns, we run late and challenges happen.

All of these teach us something very important though: resilience.

I actually need my daughter to learn to make mistakes. I need her to learn that this is OK.

I need her to realise that she is not loved any less, looked down upon or valued less just because she put an extra letter on a word by mistake or made a simple addition error in her maths.

I need her to laugh it off when a toy won’t line up just right or we are two minutes late for school one day.

All of this takes time though.

Most parents want their child to take more care of their work, or keep their clothes a bit cleaner or tidy their room.

I want my child to take a little less care of her work at times, make more mess of her clothes and play freely in her room even if she gets toys everywhere.

It seems crazy doesn’t it, but that’s one of the hard things about raising a perfectionist: few people realise how much patience is actually required when your child has to have everything, ‘just right’, at all times.

To all those parents raising a fellow perfectionist: you are not alone!

I know how hard this is even if no-one else can see it! Just know you are not alone.

P.S. Just for the record I am not a perfectionist so if there are any mistakes in this piece feel free to say.

I won’t get upset 🙂

Halloween Isn’t Like it Used to Be..

It’s just not the same.

It’s not like the Halloweens of my childhood…does that mean it’s better or worse?

I feel it’s better on one hand; we’ve got a far more inclusive land.

Yet on the other, there are many things I miss and wish my children could explore the Halloween’s of long ago.

There’s no collection weeks before, no one calling to every door,

“You got anything for the bomb fire, Mister?”

“A flat tire,some toys and junk – make sure to watch for splinters!”

Bonfires no longer cloud the neighbourhood in smoke.

There’s no fire to throw sticks on while kids laugh and joke.

There is no crackling of wood to be heard.

Nor the chance to watch flames rise higher and higher.

There are no firecrackers handed out, “Who’s here with you tonight honey? Step back – mind the fire!”

There is no community standing around watching as the flames jump and dance to the sounds of, ‘oohs’, and, ‘ahhs’.

Long gone are the plastic masks that slow down your breathing , leaving your upper lip dashed with beads of sweat while you continue singing.

Bin liners are strictly for bins these days, they have no place for little arms or legs or painted faces.

There is no song to be sung, or dance to be danced, a mere, “Trick or Treat”, is all that be heard.

No longer is the discount junk enough, oh no, it has to be top shelf stuff; brand named bars and posh crisps, none of those sugary dips.

Rice Krispie cakes are not creative enough, now, we’re expected to do all the Pinterest stuff.

Yes Halloween certainly has changed since my childhood, back to the 80’s?

No, I don’t think we should.

The treats are given with much more consideration; allergies, nuts, sensory needs included, not forbidden.

My son goes door to door without a care; for the neighbours know he’s overly excited by all the ghosts and scares.

No longer are kiddies like my son feared, there’s no horrible words being shouted as he goes about collecting his share.

It was different for my brother; many years ago now;  often he went home upset and in tears.

But my son knows none of these fears thanks to a society that grown through the years.

Yes, Halloween has finally changed, for the better in many ways.

Although I do miss the bonfires and the marshmallow s’mores and all the genuine scares.

Happy Halloween to you and yours!

Special Needs: The Halloween Dread

You may knock on a house and it will be dark, the curtains will be drawn.

You will knock on the door and it will be opened up by a smiling mother who happily compliments the costumes and hands out packets of sweets.

While speaking in a quiet voice and making sure the door behind her doesn’t open. All this because her son is autistic.

You see this house is my home, where I have to care for my son who doesn’t cope with this sort of day at all.

This day comes with strangers knocking at his door, houses being decorated with spooky things; some that light up and some decorations that make noise.

There are shrieks of excitement from the street outside as children excitedly knock on people’s doors and share what they have been given with their friends and family as they walk back up the paths.

There is the general routine change as the school holds a disco, all the children at school are excited and the knocks disturb our quiet time.

After Halloween is done, and the decorations are taken down routine will only be in the house for so long before firework night and then Christmas.

Halloween to us, is the start of unease in our house, it is the start of routines slowly changing, it is the start of Christmas music blaring out of every shop and houses being lit up at night by fairy lights.

It is the start of when my son is so excited by firework night and Christmas that he isn’t too sure what to do and ends up either lashing out and hurting people or going into a ball and rocking.

I love seeing people have fun, and I hope that one day my son can be one of those people, however at the moment I can’t see this happening.

At this moment I am just willing my boy to not bounce off the walls when there’s the unexpected knock at the door, I am hoping not to be hit, when he is over excited by everything that is going on.

I am hoping that he can be comfortable in his surroundings as the events start to happen.

Halloween is just the start of such a joyous season, I hope that one day it won’t be filled with dread over my boy not coping.

Special Needs Parents: What Would You Expect to Find in a Public Bathroom?

Of course you know they will have some as by law every establishment of a certain size that sells food and drink must have bathrooms for their customers (other than take away places of course).

What do you expect to find in a public bathroom though? Do you expect cubicles, toilets, perhaps a urinal in the gents, hand basins, a rubbish bin, soap and a hand dryer or paper towels?

What about a hoover, bags of laundry piled on the floor, and a large hold all bag full of…well actually who knows what it is full of as you don’t dare to open it?

This is how I found a disabled bathroom in a restaurant in my home town today.

I was angry, upset and shocked.

I had opened the door of that bathroom as I had two disabled children with me both of whom need privacy and space to have continence products changed.

It was unsafe, unusable and more like a storage cupboard than a bathroom!

Instead I had to take the children into the ladies toilets and undress them in full view of anyone who happened to walk in as the cubicles were far too small for an adult to be in with them let alone undress them and see to their personal needs.

Using a bathroom that was clearly built and needed for the disabled community as a dumping ground or a storage cupboard is despicable.

It is akin to saying disabled people do not matter, they do not care about them and we do not want them on our premises.

Imagine the outcry if the ladies or gents were used like this and customers were unable to use those bathrooms?

They would soon lose customers, have poor online ratings and health and safety would close them down.

So why is it acceptable for a disabled bathroom to be used like this?

It isn’t.

I don’t agree with public slating of any company and damaging businesses without giving them a chance to be heard so I will be contacting the restaurant directly quietly to ask for an explanation  and assurance this will never happen again.

I have, however, used the photograph because it is not an isolated example.

I don’t want to imagine how many businesses, companies and public buildings are using facilities for the disabled in this way.

People seem to see the space as ‘wasted space’ or ‘an inconvenience’ or worse still, ‘somewhere we had to build by law that we don’t want.’

It is a sad reflection on society that children like mine (and disabled adults) as seen as unworthy and second class citizens.

You know in an ideal world I would have loved to have shared lunch with my beautiful children and been able to clean them up and freshen them in a bathroom fully fit for purpose.

Ideally I would have loved a height adjustable bench but I accept that this is a small family owned business and these things cost greatly.

So I settle for a standard disabled toilet to give my kids the dignity and privacy they deserve and need.

No-one would have eaten a meal there today if the hoover, bags of laundry and whatever else had been placed on the restaurant tables so why should it be acceptable to put these things in an area equally as important to disabled customers?

If they are happy to take my money and provide my family with food they should be equally as happy to have usable facilities for us all.

Or maybe that hoover and those bags of laundry mean more to them that the thousands of disabled in the town they serve?

That is a very sad thought indeed.

Special Needs Parents: Making Friends Through our Children’s Conditions

Once upon a time we were drifting through our happy, ‘typical’ lives, all spread out across the country, never for our paths to become intertwined.

Then, along came Mother Nature with a pregnancy, and into that pregnancy she kindly dished out an extra pair of chromosomes.

Our babies were born and, therein, began our journey into our special world of friendship and discovery.

The next few months would include some very dark, sad, and overwhelming moments.

Times of frustration, deep sadness and desperation.

The feeling that we were alone, watching the others, that used to include us, going about their seemingly easy and relaxed lives, with their neuro-typical children.

Then, one-by-one, in our own time, we decided to look for help by way of social media.

We joined Facebook groups:  Tetrasomy 18p (created by an aunty in New Zealand) and the official Chromosome 18 Registry & Research Society group.

The fog started to lift, as the existence of other families, just like us, was unveiled.

I trudged through these groups, desperately seeking out any members that were also in the UK, and it became apparent that there were a handful of families.

While doing this, a message popped up from my now dear friend Jessica, welcoming me to the group, and offering some beautifully heartfelt words.

The exact words that I really needed to hear right there and then.

Since then, I would like to think that I have paid that gesture forward to several other families, who at a later time were going through the exact same anguish, and who now, are also very good friends.

It was apparent to me that Jess, myself and the other parents that I had connected with, could really benefit from a UK-based Facebook group.  So that’s what I undertook to create.

My primary reason for starting the group was for practical purposes; so that UK families had a place to discuss topics that were specific to the UK.

For example, how to navigate our NHS for therapies and equipment, discussions around childcare and education, and the social care and benefits systems.

However, I did not anticipate just how quickly this group would grow and flourish.

Before long, we were sharing our anxieties, celebrating our triumphs, confiding in each other with our concerns, posting pictures and videos and bouncing around ideas.

Friendships were born and were growing at an exponential rate.  Even the dads and grandparents were getting involved!

At this point, only a handful of us had met up, through the previous European conferences, but in the main, we existed as ‘virtual friends’.

It was evident to me that we needed to arrange to get everyone together.

Six months later in the height of summer 2015, my husband and I hosted our inaugural ‘Tetra Get-Together’ at our home in Christchurch, Dorset.  Seven families came from all across the UK.

We had an absolutely wonderful weekend of fun, barbeques, beach, surfing and sunshine.  You can read the blog I wrote after this event, here.

This was the advent of our new-found friendships, from virtual friends into the world of real-life.

Skipping forward two years, I have lost count of the number of times we have met up with our dear friends.

Holidays to Devon, six-hour road trips between Harrogate and Bournemouth, Christmas concerts at the theatre, weekends in Bristol, trips to visit new-born brothers and sisters, a charity half-marathon in aid of Chromosome 18, and of course most recently, an amazing group get-together in Croydon which hosted in excess of 80 people!

I have been asked by the Chromosome 18 registry to blog about the, ‘blueprint’, that has made our group so successful.

I really cannot put my finger on why, or how, our Facebook group became so much more than a Facebook group.

One thing is for sure, we put our children at the heart of everything we do, and we celebrate each other like family.

We cherish achievements and lament the losses, we confide like the closest of friends and we harbour no envy, judgement or prejudice.

When we meet up, I find myself feeling so relaxed and at ease, relinquishing those usual concerns about the pressures and judgements we are exposed to in our regular lives.

We are the centre of our own universe; we are the typical ones.

We need show no embarrassment or shame, where real life would impose it on us.

Is it luck or coincidence, or something more metaphysical, that resulted in us all being so like-minded, and such kindred spirits?

And that goes for the dads too; their interests, senses of humour, and characters are uncannily compatible.

We have regular FaceTime calls so that the children can laugh, chat and show each other new skills.

We have WhatsApp groups for regular contact, we send birthday gifts in the post and even ‘thinking of you’ gifts at sad times.

We always have a meet-up in the planning; right now we are hatching our plans for a long-weekend in London for the Singing Hands Christmas concert.

Last month we had our wonderful friends from Harrogate visit us in Christchurch for a week, and we shared some wonderful days out and made life-long memories.

Life before Tetrasomy 18p is a distant memory, and if I ever find myself answering the theoretical concept of ‘if I could take away Jenson’s t18p’ my initial and overriding reaction is one of horror, that I would lose these friends, and Jenson would lose his best buddies.

Where some of our old friends have dwindled and deserted, our friendships have grown and galvanised.  We have taken residence deep in each other’s hearts.

I would class the friends I have made through Jenson’s rare genetic disorder among some of the very best friends I have ever had.

It’s a bizarre thing really, the way that fate determined a group of people’s paths to cross, who would otherwise never have met.

Trick or Treat in My Wheelchair

Halloween is near!

My middle child, Oliver, is three years old and finally understands the events that take place on October 31st.

Last Halloween, we chose not to do the stroller and carried him house to house, instructing him house after house to say “Trick-Or-Treat!”.

This year we have his wheelchair, which he loves to manoeuvre himself.

He may not be on the chart for his age group, but for 24 pounds he sure does get heavy after a while. And that is before he gets all the candy in his belly!

With that being said, we fully intend on using his wheelchair for our trip down the neighborhood come the time.

Unfortunately, things do not have to be wheelchair accessible in the local neighborhoods.

This makes it extremely difficult to get from the street to the sidewalk, sometimes up the curb to the pathway leading to different houses.

It can almost be discouraging if we see a pathway that may be too much for us to handle. This means many houses missed, when he may not fully understand why we chose to skip it.

The difficulty doesn’t stop there though! It is always challenging when you have other children in the family, and you strive to treat each one as an equal.

If we let the other two kiddos go up to the house we skip with Oliver, he will ask why he can’t go up there with them.

If we have all three kids skip it, they get upset because they can’t get all the candy they could. The battle is forever ongoing.

Each year we learn the ins and outs to having a child in a wheelchair, like knowing when to take the all-terrain stroller over his chair.

It will be our first Halloween with him in his wheelchair, and we can only hope things go as smoothly as they can.

For those familiar with this struggle, what have you done to make things work out for everyone during events like this?

Do your neighborhoods have easy accessible sidewalks?

If you could improve your neighborhood for your child and their wheelchair, how or what would you do?

Let us know in the comment section below! We always love to hear your feedback.

Special Needs Mom: This is My Story

My little warrior comes in a small package. The blondest hair you’ve ever seen, eyes as blue as the ocean, and a laugh that can turn any head!

His name is Oliver, and three years ago he was diagnosed with spina bifida. At about 20 weeks gestation, my husband and I received the diagnosis for our boy.

We had in fact, just found out the gender of our little bundle two days prior to receiving his diagnosis.

Everything had seemed to check out as it “should” on our ultrasound with an extra part that confirmed we were having a boy. Lol!

I clearly remember the phone call in which my doctor had told me that my blood work came back and showed my AFP (alpha-fetoprotein) levels were high which meant I was at risk for my child having a neural tube defect.

I remember the reassurance he gave me, telling me that it was probably nothing but I needed a second ultrasound at higher levels to make sure.

In fact, everyone told me I likely had nothing to worry about. “Most test were wrong during pregnancy, due to high false positives.”

So, I did what anyone would do and brought my husband, mom and dad, brother AND sister to my Level II ultrasound. Joking away, I awaited my name in the waiting room with everyone.

Finally the time came and my parents and husband went back with me. About an hour later, I was escorted out the back door because I was crying uncontrollably.

We received the news everyone told me would not be possible. My son, my baby’s spine had failed to fully close in the first four weeks of development.

My Oliver, was diagnosed with spina bifida.

I allowed myself one day to grieve and cry until I could cry no more. The day after, I knew I had to only follow the good and meet families who were in my shoes.

We have taken the bad and hard days one at a time, but always try to maintain a level head. In that one moment that we received his diagnosis, I can honestly say that it seemed like the worst day of my life.

I remember not knowing how to proceed with life knowing that my son has spent his whole life fighting and he wasn’t even born yet.

But with the Lord on my side, I can tell you that it has been the best thing to happen to me because I was blind to how precious life can be.

I am blessed to be called his mother and to call him, my little warrior.

Special Needs: Undiagnosed is Disabled

People, including parents of disability, sometimes can’t get their head around the fact we have no diagnosis. In fact I can’t get my head around the fact we have no diagnosis.

I don’t have an answer as to why my daughter’s organs are failing, I have no answer as to why her skeleton formed just slightly differently to what it should be, I have no reason why my daughter still has to eat purees, I have no reason why my daughter lacks noise.

I just have a lot of questions no one can answer;

Will she outgrow some of the difficulties she has?

Will she learn to talk?

Will she eat solid food?

Will she ever walk?

What level of care will she need throughout her life?

The hardest question though; will my daughter live a normal lifespan?

We left the hospital a couple of months ago with a list of numbers, but not the hospital’s receptionist and test results telephone line, but to family therapists.

The following health visitor visit, for the first time ever, I cried in front of her, as she told me she now has to prepare me for the news no parent wants to hear.

Yet all of this is on a condition no one has a name for.

It still maybe the case that my daughter will live to be a pensioner and this is something I cling onto, but people can’t seem to understand that having no diagnosis and having all the tests under the sun come to the same inconclusive result is hard.

Everything is saying something is wrong with our baby, but no one can tell us what is wrong.

I may not have a syndrome name, we may not have a primary diagnosis, but we still go to physiotherapists, occupational therapists, consultant’s appointments at 2 different hospitals, as well as all the home support, that comes with being a parent to a disabled child.

Yet for some reason having no diagnosis outshines what we do daily. That having no diagnosis means our disability doesn’t exist.

What does undiagnosed actually mean? It means my daughter is super rare, or that our modern-day marvels just aren’t advanced enough to tell me what is wrong with my baby.

It does not mean she is not disabled.