V Is For Voice

But then there have been the odd occasions, the seemingly random pure miracle moments when we have heard her voice.

Not the joyful babble, or that constant stream of jumbled consonants and vowels that resembles a difficult round of countdown, but an actual voice with words.

In seven years here is what she has said:

“Elephant” whilst sat on my lap at Grandad’s and looking at a copy of a colour supplement I pointed to a photograph of one on the cover and she repeated my word. Only once mind and nothing else after that.

“I’m a good girl” whilst sat on my lap the day before my sister-in-law’s wedding. Luckily my husband walked into the room at the time and heard her, otherwise I doubt he’d have believed me.

“Yes” shouted emphatically into my mother’s face when she asked Lucy if she was bored, my poor Mum promptly burst into tears.

“Yes” shouted straight into my husband’s face when he asked if it was time for her to go to bed.

“More” for her favourite petit filous fix, but she has since given up saying it verbally and now signs “more” in Makaton instead.

“Love you” which punctured the air like an arrow at 4am on our first night on holiday when my husband and I were so shattered with her staying awake all night. Needless to say we forgave her instantly!

“Really?” said this weekend as she was sat in her activity chair in the kitchen. I was unloading the dishwasher and nattering to her about our plans for the day ahead.

Lastly, and perhaps most surprisingly…

“Planet Earth!” whist watching Mr Tumble (or rather Justin) on the TV as he and two children went to the Planetarium.

She repeated their words and I very nearly ironed over my hand that was gripping the ironing board in shock.

When she speaks, or shouts, it is with a clear little voice free of any impediments and quite grown up. #

It happens very infrequently, seemingly randomly and she won’t repeat it so I can’t film it as proof!

I think it’s odd, to say the least, that she clearly can hear, understand and form words not always in repetition but in answer to a question. It’s “odd” because all the evidence from her speech and language sessions would suggest she is way, way behind being able to do this.

As beautiful as those moments are, they are also frustrating as, if it’s possible once why isn’t it possible always?

I battle with feeling hugely grateful that I have ever heard her little voice at all, with feeling angry that there must be a way of helping her to speak daily.

It would make all of our lives so much easier.

I guess we will just have to wait and see what happens, time as they say is a great healer.

We have all the time in the world (or planet) for her to find her voice.

S is for Sleep

That was back in the day when Lucy was a baby and her sleep patterns (as scattered as a crochet one) allowed me to at least cat nap.

I never, ever had what other mums lovingly referred to as the, “golden two hours”, in the afternoon when their cherubs slept. I hated them for even mentioning it.

A whole two hours? In one go? At the same time every day? Don’t be stupid!

If it wasn’t the regular night time feeds waking me up, it was the colic (that was a trying time).

Next came the whole day/night confusion thing.

Then the sensory deprivation phase followed swiftly but thankfully briefly by the separation anxiety – a few weeks of realising that the mummy she’d left downstairs was not the hissing mess that came to see her in her room, knocked that one on the head.

We tried everything, from the Gina Ford (I’d punch that woman if I ever met her) method to, “soothing”, lullaby lights and sounds which did anything but what they promised.

Once she was finally off to the land of nod, we’d have to perch on the sofa downstairs.

We kept the TV on low and would creep about at bed time because even though she could sleep through a storm, a mouse fart or that squeaky top stair woke her instantly.

Then an argument in raised whispers would ensue whilst my husband and I blamed each other for waking her.

The toddler years were marginally better until when she was two and a half, an evil being crept into our house and invaded Lucy…

Epilepsy. Nocturnal epilepsy.

That first night was the start of a new threat.

Even though she grew into sleeping better, it ruined any hope of it for us from that point on.

Sleep became a shadow of its former self. Some part of us never allowed ourselves to be fully taken into its arms and rested.

Every sound made us jump, every whimper or whine shot us out of bed to check that she was alright and not having a seizure, or choking, or not breathing.

Every time we had to call an ambulance in the night and go to hospital, blue lights flashing, we left sleep at home, sometimes for days on end.

Any sleep we did get at last was filled with vivid dreams and more than a few times I actually awoke having a panic attack.

Thankfully, an amazing family whose own son has severe epilepsy, developed a wearable epilepsy alarm which senses the raised heartbeat that happens just before a seizure.

The Pulseguard by Adris Technologies, has given back our permission to sleep, even if madam still has times when she doesn’t give it and stays awake all night.

We can trust that the Pulseguard is watching over our daughter for us.

These days I go by the Army motto, “Eat when you can, sleep when you can,” which as the latter is still irregular has just resulted in me becoming a bit more beach ball than beach babe!

T is for Therapy

For the past two days I’ve driven my 6 year old daughter to London two hours each way on a journey that should take half that time.

London traffic it would seem is a law unto itself and time takes twice as long.

They really should have invented road lanes just for transit vans – not that they’d stay in them as they seem to enjoy cutting up the rest of the traffic and find indicators optional.

To say I arrive at our destination stressed is an understatement.

The calmest voice in the car is that of the Satnav and even she sounds pretty bored by now.

Lucy is a good traveller but two hours strapped into a car seat is no entertainment and not great for her posture either.

Despite this, I tell myself that it’s worth the effort. We are about to try a new therapy, a very exclusive one only available in California, London and wait for it … Scarborough!

Now you don’t hear those three locations in the same sentence often do you?!

The therapy is called the Anat Baniel Method, a movement system that evolved from Fieldenkrais therapy and is different to anything else we have tried.

And boy have we tried a lot of different things!

In addition to the standard NHS approved physiotherapy, speech and language therapy and occupational therapy, we have tried in no particular order: Cranio Sacral therapy, Osteopathy, Fieldenkrais, Brushing, Hydrotherapy and Conductive Education.

We have also been going to Brainwave in Essex for the past three and a half years and take Lucy horse riding regularly.

Our house is fit to burst with equipment, from bouncing gym balls of all sizes, scooter/ crawler aids and walkers, benches, conductive education chairs… you name it we probably have it.

No one could say we haven’t tried, but then who am I kidding no one is going to stand there and say that, just as no one is likely to give us a medal for trying either.

That’s because she’s our child, our responsibility and we can stop when we or she wants to, only it’s never that simple is it?

Whilst there is just one more therapy out there suggesting it might work, it’s too tempting to go that extra mile to try it.

And then there’s the cost. These ‘alternative’ therapies don’t come cheap and very few are funded on the NHS.

It’s easy to get sucked into a form of self blackmail, if I just pay for X amount of sessions Lucy might do A, B or C as a consequence.

Our main concern is walking – but I know plenty of other families for whom talking, sitting or eating is their goal or tackling specific behavioural issues.

I know I should be grateful that I have therapy options available to us, the time to be able to take Lucy to them and to some extent the income to make them possible.

For now our two days with the new therapy have worked well, we are still in that early flush of hope stage like in a new romance.

Here’s hoping our dates continue.

R is for Relatives

Relatives can be great for special needs families, the safety nets that stop us from falling through into a dark space.

They can provide the respite and practical help that social services may be stretched to offer.

They can become a team of advocates around your child and a barrier against the effects of the, ‘system’.

In short they can be amazing and I have many friends with special needs children who are very lucky to have what I consider a big, happy, supportive family full of relatives that step up to the plate.

Then there are those of us who don’t have that. I’m not jealous, but things are a little tougher that’s all.

We’ve all heard the saying, “You can choose your friends but not your relatives,” which is true but, so too, is the opposite, “You can lose your friends but not your relatives.”

I’ve had occasion to walk away from a toxic friend or two who has perhaps said one too many comments that are upsetting or belittling.

Whilst I’m not saying it’s acceptable for a relative to behave like this, it is usually more complicated to deal with.

Un-following them on social media, ignoring texts and omitting them from the Christmas card list is much less easy and far too subtle for family.

Plus the fallout, the collateral damage can be huge.

If you write off a former friend, you may have shared friends in your network to ‘manage’ but ditching a relative is much more complex and can have a domino effect on the whole family.

Family social gatherings, anniversaries, birthdays etc all throw up difficult choices.

To go and face them or decline and in effect write off the rest of the family too.

A couple of years ago I had a humungous argument with my Dad after a stressful week of him and my Stepmother visiting.

They live in another country and make an annual trip to visit us.

It doesn’t reveal the complex realities of living day to day with a severely disabled child.

I understand now that this makes it harder for them to empathise as they are simply clueless to the strain of everyday life.

Throw in my acting as hostess for a week and fireworks were bound to ignite.

In the end, I had bitten my lip so many times to their unthinking comments and questions that my mouth looked like Mick Jagger’s.

Just how crass do you have to be to:

a) Talk about a child as if they are not in the room, and

b) Ask stupid offensive questions about them?

I won’t go into specifics but it brought out the mamma bear in me defending her cub.

I felt vulnerable, angry, disappointed, betrayed and ashamed.

All very hard feelings to deal with whilst also caring for a special needs child.

It was my Mum in the end, the one person who I thought would welcome my estrangement from my Dad, who initiated a ‘truce’.

Like a referee in the boxing ring, she bravely stood between the two people she knows best in the world and putting her own feelings aside healed old wounds and new.

She realised that to maintain a relationship with your family when possible is important.

Two years on and he is learning to be more sympathetic and empathetic to my life and I have been there to listen and support him through some serious health scares.

It’s not perfect our family. None of us are particularly close, there are no family members who offer to care for Lucy and give us a break.

No one other than my husband and I have ever gone to one of her medical appointments.

We are scattered geographically, so we are probably more emotionally distant than other families are with each other.

However they are our relatives, we are bound to each other in ways that are more complex than friendships.

If you can keep yours, even if you have to put up with them, I say it’s worth it in the long run.

O is for Organisation

As a student I lurched from week to week never planning forward like how much money I’d need to buy food with or when that deadline for my next essay was due.

Perhaps people these days would call that, ‘living in the moment’.

I know that I am a bit of a scatter-brain and I don’t think my dyslexia helps, but there is some method in my madness, some order in the chaos, even if I’m often the only one who can see it!

That all got turned on its head however when my magical daughter was born.

Actually to be precise it started four years before she was born.

For those of you who have ever had to worry about infertility or sub-fertility, you will know all too well about planning and organisation. Mother Nature truly works to a schedule in that department.

Those of you, like me, who have undergone repeated rounds of IVF will probably have a smirk on their face about now.

The planning and organisation involved is on an epic scale. Forget to inject yourself at exactly the right time and it’s all for nothing.

Even so, those years were child’s play in comparison to raising a baby with a unique genetic condition and an emerging long list of special needs.

Each week it seemed that we had acquired a new label to get used to.

At least I tried really hard to get her in the first place, because lord knows we have worked hard on several occasions to keep her here since.

I have a large, ‘week per view’, Filofax for my daughter that I have had since she was born, full of all her appointments.

Occasionally it has something more fun like a play date pencilled in, always in pencil!

Each year when I replace the pages with new ones (this starts in August as we start to get appointments for the following January!), I look through the year and see how far we have come.

I’ve seen a definite trail-off of many of the consultant’s appointments now.

Not because everything is fine and sorted, but because it isn’t and somehow I feel after a certain age an unspoken agreement that they can’t change things creeps in.

The Golden window of opportunity slowly closes its curtains on optimism.

Their waning appointments have been replaced with more regular school appointments, which at least are nearer and more fun.

This time, instead of resisting the tide of people, I have embraced it.

I joined the school PTFA as soon as my daughter started there and over the last couple of years I have worked with them to fundraise for a much needed new playground.

We have raised £130,000 in a year and I have fallen into a ‘project manager’ role co-ordinating staff, pupils, contractors and charities.

I even stood up at a posh London charity dinner in front of 200 people and talked about the school and what being a special needs parent feels like to me.

Only then when I saw their reaction did I know how far I have come…

An independent, organised parent, shaped by the experiences I once feared. 

H is for: Hospitals

It started with those appointments we unknowingly signed up to the moment we became parents of a child with special needs.

The ones where Paediatricians dish out observations but don’t really do much.

The appointments with therapists of every description possible, from Physio to OT and speech and language to play.

Then the appointments with different specialists as her medical issues unfolded.

The annual pilgrimage to the Geneticist, who lovely lady though she is, only served to scare us even more with her grim predictions and the possibility of yet more medical issues not even on our radar.

There have been a couple of times that we have dashed into our local children’s unit which is just up the road from Lucy’s school. On those occasions I was glad that we go to that ward so frequently the staff know our first names and how I take my tea.

The nurses there are lovely and part of our lives now.

The bigger events, mostly the in the middle of the night seizures, the Sepsis she got at six months old and the string of infections she battled with throughout her toddler years, they all ended us up in the children’s ward 20 miles away from home. Because the one down the road from us is a day ward only.

We got to know these staff too, remembered the names of the helpful ones and tried to avoid the few who were less so.

Staying on a children’s ward overnight is no pleasant experience, it’s noisy, either freezing cold or stiflingly hot and lonely.

On the few occasions where we were kept in isolation and had a room to ourselves, the stay itself was more bearable.

Tucked away in a secluded spot, I’d start to nest build on a small scale, bringing in familiar toys, a blanket etc and try and make it a home from home as best I could.

You simply can’t do that when all that’s dividing you from an arguing family or a child throwing up, is a flimsy curtain.

In a side room you also usually get a fold up bed to sleep on next to your child.

However, on the ward it’s a showdown to get the comfy pullout chair that turns into a very slim sized couch, they are usually pale blue and there is nearly always only one on a four bed ward. Everyone else sleeps uncomfortably on the grey plastic chairs.

The situation was no better when we knew we were going into hospital for planned surgery.

Lucy had three major operations on her hip and thigh when she was age 14 – 17 months old. We had met the wonderful staff before and knew what to expect.

What we hadn’t planned on was us all catching the Noro virus from the poorly little boy in the bed next to us who was violently ill, a lot.

We brought Lucy home in a full body cast which only had a small hole cut out to tuck nappies in. You can imagine how that first 48 hours went!

I’d love to write something positive about hospitals, they are on the whole amazing places covering a huge range of medical issues and little kingdoms in their own right.

But there’s so much more that they could do to make stays more bearable.

I once dreamt up a business idea for a chain of hairdressers and beauticians in hospitals, where patients or their long term visitors or even staff could go to for a little pampering to feel more human.

Back with my feet on the ground and I’ll have to be content with my mini Clarins samples and dry shampoo, both staples for surviving a week on that blue fold down couch!

E is for: Epilepsy

I was having a dream, more of a nightmare really that I was carrying Lucy in a baby sling and she’d fallen down too far, head squashed against me and couldn’t breathe.

I awoke with a start and then realised that her scream had woken me.

It was a blood curdling, wake the street up kind of scream and I was out of bed and by her side in seconds.

She was sitting bolt upright staring forward and unresponsive, then her tongue started darting in and out of her mouth she started drooling.

Her eyes then drifted off up to the top right and she fell back onto the bed.

It was 2.30am on a Sunday morning and I had absolutely no idea what was happening but instinctively knew I must call an ambulance.

My husband had flown into the room with me and was now cradling her listless body on his lap.

She was due heart surgery in a few months time, so at that point I genuinely thought she was having a heart attack and we were losing her.

The 999 phone operator was amazing, she kept calm getting me to speak clearly.

Then as I told her our details, Lucy’s right arm started to twitch, subtly at first and then more noticeably.

Then her right leg joined in and within a minute her whole body was jerking.

Ridiculous as this now sounds, I was overwhelmed with relief that she was having a seizure and not a heart attack.

I knew nothing about epilepsy apart from thinking it was fairly common and curable.

She remained that way until the ambulance crew arrived and took over.

They administered diazepam and nothing happened. Her breathing then became laboured and the sense of urgency in the tiny nursery stepped up a pace, we were going into A&E on a blue light.

The paramedic gently scooped Lucy up in his arms like a broken little bird and carried her to the ambulance.

The blue lights danced off of the neighbour’s houses and woke some of them up.

My husband drove behind us in his car whilst I sat numbly in a ‘jump seat’ in the back of the ambulance watching the Paramedic try to revive my daughter.

It’s a long 25 minute journey to our local hospital and in the middle of the freezing cold night it was also foggy.

Despite the trauma unfolding, there was a kind of peace and calm in the ambulance, a sort of protection. No one spoke.

That all changed as we arrived at the A&E department and were met by a team of doctors.

Still shaking in a constant seizure, Lucy was laid on a bed, surrounded by medical professionals.

They spoke quickly to each other, applied monitors to Lucy and tried to get a cannula in to medicate but it was futile.

In the end they asked us if they could access her blood supply in her bones and we watched morbidly transfixed as they plunged needles into her shins like they were butter.

On the second attempt it worked and yet the medicine they gave her still did not stop the seizure.

She had been fitting continually for an hour and a half.

There was talk of inducing a coma to give her little brain a rest, an air ambulance to London was mentioned as they explained it was too complex for them to deal with.

Then miraculously the seizure stopped.

But then the fall out started. Cat scans, admission to the children’s ward for 48 hours observation.

Detection and treating of the underlying infection that had caused her spike in temperature and the seizure.

We went on like this for another eight months.

Because of her age (2 ½) doctors assumed they were febrile convulsions due to high temperature.

It wasn’t until one of our stays coincided with a paediatrician on call who is an epilepsy specialist, that the E word was even discussed with us.

She had another six seizures, each one different.

The second one only lasted a few seconds and went away on its own.

The third she stopped breathing in my arms and turned blue.

Luckily we had rescue meds by then and quickly giving them to her she came round and started breathing again.

All the other times we have had to call an ambulance because the seizure either didn’t stop or her breathing became laboured following rescue meds.

We now know she has Status Epilepticus, or seizures which don’t subside within 5 minutes. It’s bad, very bad indeed.

We count our blessings though, thankfully she only gets them when ill, so we are extra vigilant with that.

She is responding very well to the epilepsy medicine and we have now been able to manage any breakthroughs at home by having a no wait on rescue meds.

Lastly the thing that has made all the difference to our lives, and given our sleep back to us is an epilepsy alarm called Pulseguard, created by parents of a child with epilepsy.

Lucy wears the watch like monitor at night and it sets off an alarm if her heart rate goes too high or low.

It’s saved her life once already, so even though it is a little expensive, to us it’s priceless.

So that’s it. Mr E stormed into our home one November night and tried to tear us apart, but you know what,

So far, he hasn’t won and we will do our best to make sure he never does.

D is for: Diagnosis

An album of where we were when we got Lucy’s diagnosis, or rather all the places we were when her condition started to unfold:

From the young paediatrician who (wrongly as it happens) told me my newborn had Down’s Syndrome, before shutting the curtains around my ward bed and leaving me alone for an hour to digest this information.

To the kind older paediatrician who on day two gently suggested Lucy’s features looked dysmorphic and he’d like to run some tests.

Then the chirpy SCBU nurse who battled with neonatal sized needles and latex gloves around our arms to try and get our blood samples.

Our even chirpier attitude and disbelief that a young couple with five university degrees between them could have anything wrong with their genes.

The fax shown to us in the SCBU corridor outside the breast pump room. Its scattered numbers and letters looking more like a knitting pattern than a diagnosis.

The string of unanswered phone calls from Guys hospital genetics department and then the one which came and changed everything.

The one I took on the phone at the top of the stairs during which the genetic counsellor announced that, “with that result there was no way we weren’t looking at severe disability”.

I still don’t know how I didn’t fall down the stairs.

The hours that merged into days and weeks, trawling the Internet whilst absorbing so much new and alien information it physically hurt.

Going to sleep with pictures of chromosome maps imprinted on the inside of my eyelids.

The frantic phone call my husband then made back to the genetics department to find out the exact break point on one of the chromosomes as we clung to the hope that things might not be that bad.

The moment the person taking his call refused to give us the information over the phone and I collapsed to my knees and started screaming.

I clawed at the living room carpet till my nails hurt and in the shear stress of it I started foaming at the mouth and muttering gibberish in between huge sobs.

A few days later, I awoke early in the clear knowledge that I didn’t want to be alive.

Some higher power took my weak body downstairs and phoned 111, who told me to get to A&E.

By the time my husband woke I could no longer walk, and was in the early stages of a complete breakdown.

The terrified look in my mother’s eyes as we dropped Lucy off to her so that we could go to A&E.

By this time I was mute and withdrawn, very deep inside.

The feel of the cold wall against my face in the A&E room as I sat on the floor clinging to it.

Ironically, it was only then that our family got some professional help.

This simple act of wall hugging, released an army of suit clad psychiatric nurses that visited us once a day for two weeks.

No drugs, no therapy, no men in white coats (thank fully) no district nurse, no nanny.

In short; no real help.

The look on my husband’s tired face when he came home from the long awaited appointment with geneticist.

His own sadness reigned in to protect my fragile state.

The world resting on his shoulders.

I loved him so much for that, for being strong for all of us.

Breaking the news to family, both here and abroad and hearing their helplessness.

Discovering that the genetic fault had been inherited through a balanced translocation, not discovered despite all the tests we had had prior to IVF.

Feeling bitterness at the IVF clinic, wanting to blame someone.

Terrified of blaming our family.

The testing of other family members to see if they had the same gene fault, the net of diagnosis widening to take in others.

The mixture of relief and abject jealously when their tests came back clear.

The family curse stopped but at our door, a very difficult thing to handle as a couple.

The diagnosis, a simple line of text on a thin fax had come in and swept us off of our feet.

It changed everything and yet because it was so rare, even unique, no one could tell us what it meant.

A diagnosis without a prognosis is useless.

Having a unique diagnosis is as useful as having none. 

It’s left me to question if Lucy is a SWAN (syndrome without a name) or not?

As the years have gone by we have now become the experts on our daughter’s condition and out of necessity have developed our medical knowledge far more than we would have liked.

There has been some light in the darkness and Lucy through her strength and charisma has shown us in her own way the path forward.

None of us have a map to our future, would we really want to scan along to the end to see it if we could anyway? 

This process has changed me profoundly, forcibly and sometimes uncomfortably but I’m finally learning that we are the ones writing her diagnosis.

Through our love, support and never giving up, we will help her to reach who she is destined to be.

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.