Special Needs Mums: Why We Detest Winter!

Now things are different.

I still love all those things but now I prepare for winter like a military operation.

For Sam, winter is a dangerous time indeed.  As it is for many special needs children and adults.

This year so far since September, Sam has suffered a bout of tonsillitis, two chest infections (one resulting in hospitalisation as his seizures became so severe), chicken pox and has had a constant chesty cough and pouring nose.

The poor kid is utterly, totally fed up; he’s tired, run down and constantly poorly. And I don’t just mean he has a cold… a cold is never, ‘only’, a cold for children like him.

A cold = fever, increased seizures, high likelihood of progressing to pneumonia… which then means oxygen, rescue medication, ambulances, long stays in hospital.

Not to mention how much school he has to miss, and how much work we have to miss to take care of our little superstar.

We had literally just been discharged after our latest little visit to the NHS hotel; due to being generally poorly with his chest anyway, when Sam was taken back in due to a chest infection.

He then had swabs taken which showed group A strep bacteria (not actually a huge worry on the skin, but if it becomes an invasive infection it can be a killer) so, yet another course of antibiotics.

After 3 weeks off school, the little guy was thrilled to be back there this morning – I am currently praying that he manages a full week!

I’m also praying that I manage a full week at work – juggling things has become increasingly difficult this year and my level of absence this semester has become too much to maintain.

Once again the importance of a supportive line manager and employer has become evident – with my level of absence they would be fully within their rights to point out that I cannot continue to do my job (as I basically have been off more than in).

Instead of this however; they are trying extremely hard to find ways to manage my work so I can work flexibly, and to ensure that when the inevitable crises hit my work load doesn’t have to be covered by other, already very stretched, staff members.

I can’t even begin to tell you how difficult it is to juggle everything, but knowing that my employer isn’t about to just give up on me means a lot.

So.. fingers crossed the little man manages a full week back at school.

Raising Kids with Special Needs: Learning Not To Compare

Carer, Condition, Chromosome, Crisis, Clinical Negligence (OK – that’s two words).

I even started about cats, because without the comfort mine has given me I wouldn’t be writing this at all.

I’d like to be brave enough to write a post on class and disability, because I have a theory on that, but this early into my blogging life I think I’ll leave that one for another time.

So, for today at least, C is for Comparing, because I’m fairly sure if you are reading this, deep down you know you have done it.

You’ve been sucked into a green eyed battle of weighing up the needs and abilities of another ‘special child’ over that of your own.

For me as a first time mum, this incredibly self destructing practice happened early on and actually wasn’t really my fault.

Despite an early diagnosis (when my daughter was a couple of weeks old) I forged on with attending ‘mainstream’ mother and baby groups run by our local health visitors.

To start with the rest of the mums were all in pretty much the same state of mild shock that babies don’t come with a guidebook and that they sleep for shorter periods that we’d all been lead to believe.

A month in, however, and these meetings took a turn for the worse.

The health visitor asked us each week to introduce ourselves and our babies and now also insisted that we name one new development our child had made the previous week.

If this in itself didn’t raise the checkered flag to competition then by the time the third or fourth ‘update’ had been given, you could feel the tension in the room growing.

Lucy was, and still is, severely delayed. In fact we weren’t able to report many of those early milestones until most of that group of babies were starting nursery and their mums were on to having their next one.

Call me stubborn, but I started to make things up.

By week 8 Lucy was, “..showing clear promise at the piano..”, and similar talents.

I got sick of the boastful remarks the other mums made, as if they themselves had had the simple achievement of blowing raspberries (which believe me took all my mental strength not to do in those meetings).

At six weeks old, Lucy was also diagnosed with hip dysplasia and put into a Pavlik harness 24 hours a day.

This changes the position of the legs to keep the hips in place, it also makes the baby look like a spatchcock chicken.

Comparisons by then were pointless.

My beautiful baby was wearing a contraption which looked so alien and uncomfortable and nothing like the pictures of babies in the Mothercare catalogue.

I gave up the comparing thing with ‘normal’, healthy, non disabled babies from there on in.

At about 6 months, the developmental gap was marching ahead and as bitter as I was about it, I knew when to quit.

I then hit a new all time low, comparing Lucy to other special needs children, and started to quietly obsess that if so and so was walking, talking, eating etc by a certain age, that gave us hope.

Only it didn’t.

Comparing two children even with the same disability is futile.

Up until this point I genuinely believed that all people with Down Syndrome were similarly affected. How wrong I was.

It also didn’t make any difference what so ever to Lucy’s prognosis.

What she has and will achieve is not going to be influenced by what another kid is doing.

Yes it makes it harder that she has a unique condition, she is in effect a SWAN (Syndrome without a name).

I have tracked down one family with an adopted daughter in America with nearly the same unbalanced translocation.

The instant relief I felt in not feeling completely alone was soon overtaken by that niggling comparison, which really is like an itch I’m not able to reach to scratch.

Then a close friend of mine (also a special needs mum) put me straight one day.

I had praised (and envied) her daughter for starting to walk and she firmly said to me, “It’s not a competition”.

I was taken a back a little, it’s all very well to say this when your kid is winning the competition.

But after a while I came to agree.

Our kids are not on the same playing field as each other they therefore cannot compete or be measured by the same set of standards.

If ever there was a time to celebrate uniqueness it’s now, stop looking at what someone else’s kid or your other kids were doing at the same age.

Take the pressure off of yourself and give your brain a rest.

You deserve to be allowed to see your kid for who they are without comparing them to who they could have being if things were different.

They also deserve to be appreciated for who they are now, not what they might or might not be able to do in the future.

Love, in the end, is the most important need and ability.

Loving someone for who they are really is the most any parent can strive for, and is something some parents of non disabled kids fall short of every day.

Raising Kids with Special Needs: Fighting the Battle

It usually starts with the doctors upon diagnosis.

We have to fight for their life and the decision to continue the pregnancy!

Crazy, but it happened to us.

Then we have to fight the first stares we get when we go out in public.

I usually take that battle by informing the clueless stares and pointing fingers.

Educate the unknown.

When we applied for disability for Oliver, I never thought I would have to fight that.

Our first denial claimed that he was not disabled.

We appealed that with records showing that being born with spina bifida, hydrocephalus and clubbed feet which has caused paralysis does indeed fit the disability criteria.

Then we were hit with a second denial. “Although your son is disabled, it does not interfere with his daily life.” I quote that one, because it is my favorite.

Even though Oliver was only 9 months at the time of that denial, how could someone who does not know our daily life claim his disability does not interfere with it.

They are not there every three hours when I have to cath my son because his paralysis affects his bowel and bladder.

They did not understand that when I appealed the second denial, Oliver was now 14 months and still unable to crawl or walk.

Oliver was three months when we first applied for disability and was 20 months when I finally got a hearing for him.

The next battle within this war, came with finding a representative.

I argued with myself that I really did not need one, and after failing to find someone who would represent an infant, I decided it was the only way to go.

I told the judge I believed and felt fully confident in my ability to explain all his medical history as I was the one who took him to every single therapy and appointment.

The hearing proceeded the best way it could, and only addressed his medical issues and necessities.

One month later and I have finally received my letter that we are approved!

The approval was like a cake with extra yummy frosting, but the cherry on that cake came within the letter.

In just a couple of sentences the judge mentioned how great of a job I was doing for my son, and how the state failed to realize that my son indeed did have a disability that interfered with his life on a daily basis.

Hearing from someone else that could have turned us down that I have done a great job for my baby and fighting for him was almost just enough for me.

If only that was enough to help pay for his medical equipment and therapies, lol.

All in all, I am glad that I put in the fight for him and remained strong when I was almost knocked down twice.

Fighting for him, when he has yet to have a voice for himself is so important to me.

Whether we are advocating or fighting the system for our children – never give up hope!

Nappy Provision: Special Needs Mum Takes on the Supermarkets

Brody has Global Development Delay (GDD to those who are familiar), hypotonia, hypermobility and epilepsy.

As a result of his GDD, he is non-verbal and isn’t yet potty trained.

On the 30th November 2015, I decided to post on a leading supermarket’s Facebook page about providing larger nappies.

To explain:- size 6+ (the largest size supermarkets sell) is becoming too small.

I was feeling frustrated about the situation and how this is yet another difficulty parents like me face – finding suitable products easily and at a reasonable price.

The response to the post from other parents was great in terms of support and understanding.

However, I decided I needed to step it up a notch and as a result created a Change Petition asking ALL of the supermarkets in the UK to provide larger nappies.

The louder we shout, the more chance we have of being heard, right?

Well-meaning followers, point me in the direction of the continence service, which Brody is soon to be referred to.

Whilst there is no doubt that this service is beneficial, what a lot of people don’t realise is that there is an inconsistency with how the service is operated around the UK.

For example, I have discovered the following from talking to other parents –

• The age a child is eligible varies (where I live it is 4, someone explained that their child wasn’t eligible until they were 8)

• Some parents, despite their child’s disability, find that they are not eligible.

• The waiting time differs depending on where you live.

• The number of nappies provided also appears to vary.

As a result of this, either due to being ineligible or not having enough nappies, parents have no option but to buy nappies online, which can be inconvenient and expensive.

Well-intended people, also highlight that Pull Ups are available.

However, these are designed for children in the process of potty training who have some bladder control.

The feedback is that they are less absorbent with fewer in a pack at a greater price tag.

Liz Crook contacted me with a photo that I thought was apt.

It showed how much money she spent on a pack of nappies for her newborn (£2), 15 month old (£4.50) and 5 year old disabled child (£14).

Of course, the nappies for her disabled child had fewer in a pack for the hefty price.

There is a huge gap in the market.

How great – and yet simple – would it be to be able to go to your local supermarket and pick up a larger size when needed?

Not spending over the odds or waiting for an online delivery when you’ve run out.

I really hope that the supermarkets listen and our voices are heard.

You can sign and share my petition here.

Raising Kids With Special Needs: When You’re Sleep Deprived…

Meds are being changed and they are making my little boy suffer once again.

Drug increases are just as difficult to adjust to as drug weaning.

Seizures at night mean that none of us are getting the sleep we need.

Sam manages brilliantly, mostly by sleeping on the way to and from school, and by flaking out once he gets home!

Mummy and Daddy, however, don’t have that option.

And this week is a big one for appointments – seriously, WHY do they all come at once?

Do the appointments people do it to us on purpose?!

The big one is on Wednesday with Sams Neurologist.  And I am going to need to have my game face firmly in place as it is not going to be an easy one to get through.

The thing is, when our children’s consultants see them it is usually for 20 minutes every 6 months; through no fault of their own they don’t have the chance to really dig deep into what it’s like on a daily basis for their patients and their families.

Sam’s Neurologist has been with us since Sam was 18 weeks old, he’s pretty much family, and I love him and want to throttle him in equal measure!

He is also human, he doesn’t have a crystal ball and isn’t able to pick a particular drug off the shelf and say, ‘This is the one that will stop the seizures’.

Sadly it is a balancing/juggling act and it is utterly demoralising as we try a new combination of medications and have to report, again, that the seizures are continuing.

I have only ever cried once in a neurology appointment, and that was the day he had to show me my boys MRI scan… and he had to fight back his emotions too.

This week may well be the second time I cry in an appointment with him – it’s just such a hellish experience watching my little man go through so much, and being utterly helpless to do anything about it.

Currently, the medications he is on are holding back the massive seizures that stop him breathing, but are making his other seizure type far worse.

We could try a new drug, but that brings so much uncertainty with it over whether it will help at all, or make things worse, or bring with it awful side effects.

But the main reason for this appointment is to discuss surgery.

More specifically, why no progress has been made with referring him for evaluation.

No parent ever wants to discuss this sort of thing, we are in effect asking them to see if our son is a candidate to have his brain cut in two in a bid to stop the seizures.

I feel sick just thinking about it, but then there’s a tiny spark of hope that the surgery might help him more than anything else.

Until he is evaluated we don’t know if it’s even an option, and now this special needs mum has to put her foot down firmly.

I suspect all parents feel as anxious as I do before an appointment – please tell me it isn’t just me?!

I dread it.

But it’s the way we make headway and help our children… fortunately, we have medical professionals who are prepared to work WITH rather than AGAINST us, but it is still a difficult path to walk.

The Exploitation of People With Disabilities and Inspiration

Such a picture (as above) is meant to inspire people who do not have disabilities to persevere and go on to achieve similar great things themselves.

But many people in the disability community feel that this sort of thing exploits and objectifies the disabled.

It’s called, “Inspiration Porn”, which is when a person with a disability is considered inspirational based exclusively on their disability alone.

As if there is nothing more to that person than their disability.

People with disabilities do not exist to be the inspiration or entertainment of others or to make others feel good about themselves.

And I know this is not quite the same thing, but after the heartbreaking experience of my daughter, who has disabilities, have her entire life defined by someone who witnessed a public meltdown, I have to say that I agree.

No one with a disability should be defined by their disability.

Neither should anyone be defined by one aspect of their disability.

As a blogger and vlogger about life with my disabled daughter, I need to be hyper-conscious of what I document for the whole world to see through my writing and the lens of my camera, because there is a fine line between being exploitative and informative.

Deciding what to share is a daunting and monumental responsibility because what I write and film about her has the potential to either positively or negatively affect and reflect not only on her, but on every single other individual in the world who has similar disabilities!

My daughter cannot read what I write about her, nor does she really comprehend that the videos I share about our life together online can potentially be seen by the whole world and not just by her or those with whom we choose to share!

So, out of respect and love for my daughter and all others who have disabilities, I have developed two rules to guide my publishing and posting decisions.

1. If she asks me not to film her, I don’t.

2. I never publish anything about her that I would not want the whole world to see if it were me I would love to hear the thoughts of others on this subject.

If you have any other suggestions that will help make proper posting and publishing decisions concerning our loved ones with disabilities, please share them.

Autism: Diagnosis Day

My husband chose a pre prepared sandwich, very average and I ordered a latte.

My 4 year old son Cameron never ate out anywhere – he barely ate at home.

I was meticulously prepared with, “red crisps”, and, “green juice”; maybe today he will try the yogurt that we have been working on for the past ten days, maybe without a meltdown.

Our return time fast approached and we made our way back to that colourful waiting room, I always think how much more of an effort they make in the children’s departments compared to everywhere else in the hospital.

The wonderful smiley Doctor came and called us through whilst instructing a nurse to take my son to play next door, “Don’t worry,” he reassured, “He will be fine they have trains”.

I remembered the salmon coloured curtains and the teal plastic covered chairs as we were invited to join the group of professionals.

Their chairs set out in a semi circle, but still had a board meeting feel about them.

“Mr & Mrs Kaye, thank you for taking the time today for us to complete the ADOS assessment. We can confirm that Cameron score places him on the autistic spectrum.”

I don’t recall much of what was said following that, something about follow up appointments, indications that help will be put in place…SUPPORT…any questions?

  • You see at that moment the following happened; I entered the initial stages on the grief cycle –
  • LOSS
  • SHOCK
  • DENIAL

Even though as a pragmatist, this diagnosis was exactly what I needed to go forward, to learn, to grow; to get to the final grief cycle stage…acceptance.

12 months on from D Day…

“He’s had a wee in the toilet, he just went by himself!!”

I was calling EVERYONE to share this news, sending pictures; I mean really who sends pictures of poo to their friends/relatives – any autism parent!!

I could have burst with pride at the fact that, at age 5, he is now toilet trained!!

Yes it took us much longer than a typical child but you see this is not just a transition from nappy to toilet.

For us, as a family, this is no longer a worry that I have to frantically get in touch with someone to make their way to school, to change his soiled nappy because I’m stuck in a meeting in work. I was so pleased cancelling the incontinence team referral.

That he can now go to the toilet as other children in his class do.

One less thing that makes him stand out for the wrong reasons.

24 months on from D Day…

Cameron is a bright child with an ability to adapt; loving, kind, well mannered and comical but does struggle in social situations and can be stubborn!

This was the most prominent sentence of Cameron’s school report.

“He gets his stubbornness from his Dad.”

I piped up whilst looking at my husband, we all laughed.

Yes!!!

My autistic child is coping in mainstream school, they are fully able and managing his needs exceptionally well.

The statement/EHC document is in now in place along with his 20 hours one-to-one support!

Present day…

Cameron is much more able to work independently, but still has a long way to go.

He is polite, loving and likeable.

This was stated in the most recent school report at the end of year 2:

“He excels in technology and the sciences. Last year he was below the national average and his effort minimal.”

Now he is working at the expected national average and his effort is exceptional!

My baby is trying.

So you see although I started this blog post with the intricate details of the diagnosis day; which are there because of the pain that is still etched in my mind and heart, we made it past those final grief stages though – optimism, acceptance…… hope!

We will never forget but we will learn to cope and will never stop looking forward and beyond.

Kids with Special Needs: So what? It’s just a pair of shoes!

Never assume it’s because we haven’t tried.

Trust me, we have.

We have learned to listen to the things Ethan can’t say; we’ve learned to read him and we now know which situations are best avoided for Ethan’s sake.

Experience is the only way to learn this, unfortunately for all involved especially our Ethie.

The last time we brought Ethan shoe shopping was 2008. He had just been diagnosed with Hunter Syndrome.

Ethan has needed AFO’s and Pedro boots since he was four years old. Before they were introduced, Ethan only ever had three pairs of shoes, yes, three.

Ethan’s feet grow but they grow so slowly that, he rarely out grows any pair of shoes.

We decided that we would bring him into a new children’s shoe shop in our local shopping centre. I hated those boots and AFO’s, they were heavy, clumsy looking and I just didn’t like them.

My kid was battling a lot, we were facing a lot, but damn, those, ‘special’, shoes really annoyed me.

The shop assistant could have been an extra in, “High Five” – (a really, really annoying children’s programme, think Barney with adult overly nice friends). We smiled as she looked for shoes wide enough for Ethan’s little feet. Ethan’s feet are tiny but, boy are they wide!

“Hopefully she won’t take long,” D laughed as Ethan ran around the small shop yelling,”NEW SHOES”. J was only three and quietly sat in his stroller.

The lady brought over six boxes while we patted the seat for Ethan to sit beside us. He happily walked over.

“New shoes,” the lady smiled as he threw off his old ones, hitting her in the face. We quickly apologised, she joked about it being all part of the job.

The first pair, Ethan refused to try on, we didn’t force the issue. The next pair, he simply yelled, “NO WAY!” and kicked D for even trying to hold them close to him.

The third pair, “TIE DEM” he ordered me.

He jumped up, “WHOO-HOO! NEW SHOES!” we all laughed. He now had the full attention of everyone in the busy store. “You can check the fit when he calms a bit,” D smiled as he watched Ethan march, run, hop and jump in his new shoes.

“There’s the mirror,” she pointed at the full length mirror, “If you want to see your new shoes, Ethan,” she added, then pointed again at the mirror.

There happened to be only one mirror. In front of that mirror stood a beautiful little girl, who was admiring her own new shoes.

Beside the mirror where neatly stacked boxes of more shoes, from the floor right up to the ceiling.

Ethan ran over to the mirror knocking the little girl to the floor, she fell into the boxes knocking them over, which indicated to Ethan this was play time.

Ethan threw the loose lying shoes everywhere, I mean EVERYWHERE.

The little girl was now being sheltered from the over stimulated Ethan, who was trying his very best to see how well these new shoes of his kicked. D was trying to calm him, while I was apologising and picking up the shoes.

I may have even apologised to a few shoes too, who knows, I just wanted to get out of there.

Then I looked. I watched my son, scream, cry and shout while his Daddy tried to calm him. I watched Ethan look frantically around at all the faces staring at him.

He roared as his tears came fast, “NO! NO! NO!”, he roared as D hugged him, tight, from behind, trying to regulate him.

I felt my cheeks burn as my eyes stung, I was simply upset, while my son, my poor little boy, was having a complete break down over a simple task such as getting shoes.

I approached the sales assistant, thanked her, apologised again and I handed her the money.

She smiled, tilted her head and handed me a tissue.

We left the shop with a screaming Ethan, an oblivious J and two heartbroken parents who promised Ethan we would never, knowingly, let him go through that again.

Those, ‘special’, shoes don’t seem so bad anymore.

B is for: Brave

They didn’t play together of course, even though my daughter is the same age as her son, he rushed around with his toy cars whilst she lay on her back, legs in the air happily chewing one.

I have to admit I didn’t react to the comment externally as I was inside.

I managed to stifle my scream if only to not frighten the children, but in that moment what had seemed like a fairly ‘normal’ and equal friendship, changed.

Brave.

To me brave is something you call service personnel who go off to war, or hunky firemen and women (although in my dreams it’s only firemen!) who save lives at the risk of their own.

Brave people dive into rivers to save drowning dogs, wade into the middle of pub fights to end them and generally do things of heroic proportions.

Or they jump off of burning buildings wearing pants over their tights and a cape. Mel Gibson in Braveheart was, well, brave – you get my point.

What did she see about my being a mum to my daughter that was brave?

Was I being put on a pedestal? Then embarrassment gave way to horror, was I being pitied?

Was parenting of a child with complex needs being compared to something horrible that one endured like an incurable disease?

Or was I indeed the brave soldier doing battle in an endless war?

Lucy had given up chewing the plastic car by this point and was thinking about mouthing something more nutritious so I made our excuses and left.

I never did find the courage (not brave enough) to ask her exactly what she meant, or why she felt she needed to tell me.

Although we met up a few times following that, things were never the same again.

Partly due to my dented pride and partly the ever growing developmental gap between our kids which drove a wedge between us and made ‘play dates’ empty and a bit pointless.

Fast forward a few years and I feel stronger and more mature now, more able to challenge the throw away comments like that which can sting.

I also realise I’m quick to assume that the person has meant something by it when perhaps they haven’t.

People do need to be given the benefit of the doubt and a break now and again.

I’m not sure I agree with her use of the word brave.

To me, brave still suggests someone’s put themselves at risk knowing the consequences.

We are not like that, even those who do know that their child will be born with disabilities can’t possibly know how hard the road ahead will be.

Perhaps brave is the way in which we face that road, but again it suggests to me a, ‘stiff upper lip’, and get on with it attitude which is a high bar to set ourselves for those days that we just don’t feel strong enough to be brave.

It’s a word I would like to aspire to, but would never burden any special needs parent with – and especially not their child.