The Beauty of Communication: Special Needs Parenting

I’ve come to appreciate just how vital communication is.

My little girl has always had a very tough time communicating.

That being said, she has come SO far in her four years and we couldn’t be prouder of her!

Brielle is deaf and wears cochlear implants, she is mostly blind too.

She doesn’t talk and vocalises very little. However, she is learning how to sign in response to hearing us, and uses some tactile sign and gestures.

It has been so exciting to see her little-self develop…she recently started initiating conversation, or asking for things, by doing a simple sign.

For instance, she hears the water running at the sink and she’ll do the sign for “wash hands” or she is feeling hungry and she’ll sign “eat” and head towards the kitchen.

Many people speculate on whether she will ever talk.

We’ve worked with our fair share of speech and language therapists, audiologists and teachers of the deaf, both in the US and the UK.

Many keep pushing for vocalising and speech.

But you know what?

It really does not bother me if Brielle ever talks.

As long as she can communicate effectively, which I have a feeling will be in sign language, probably mainly tactile sign.

My desire for her is to be heard and understood and to receive information in a way that makes sense to her.

Yes, it would be great if she wants to keep using her cochlear implants to gain access to sound and speech.

And understand speech as much as she is able.

But when she is older, if she decides not to use her implants, and wants to rely wholly on sign, well that is her choice to make.

There is much more to communication than speech.

I’ve realized that Brielle is a unique being with her own personality and preferences, she cannot be figuratively “put in a box” – although she loves to be put in a box to play!

Sometimes I must admit, I do long for her to open up her little mouth and let out some sounds, attempt a wee word! But I don’t have my heart set on it.

I’m content in knowing that she will show us what is right for her, in her own time, on her own terms. We just have to provide her with the best possible tools and opportunities to learn, and reach her full potential.

I never knew before Brielle came into our lives just how beautiful communication can be.

But I know how difficult it can be too. I’ve felt the pain of having very little communication from her.

She was so sick for her first two years really.

She didn’t move much, she hardly cried, she couldn’t hear us or understand sign language, she didn’t show much response to us or our attempts at communication.

Now she is a different girl.

Her personality is shining through, she shows so much emotion, she is affectionate, cuddly and clingy even.

She smiles and laughs (albeit a rather silent laugh), she cries quietly and moans, she sometimes lets out little shouts and noises in excitement.

She communicates with her facial expressions and eyes.

She is learning to ask for things in sign language.

She is learning to listen with her implants and with her hands.

And above all, LOVE is our main mode of communicating.

When Time Stops Still for a Moment

And this is one of those times when special needs parents differ to those of children without major health issues.

You see, a virus almost killed my child when he was just 12 months old (influenza  A).

For many children a cold is just a cold; irritating, unpleasant and leaves you feeling naff but isn’t actually life-threatening.

To many special needs kiddos, it really is.

In Sam’s case, a virus usually equals high temperature. Viral infections can rapidly lead onto nasty bacterial chest infections, because he struggles to clear the secretions from his chest that comes with a virus.  All of this means seizures go sky high.

So when I got home from work and his Nan looked worried every maternal instinct I have went into overdrive and immediately shot a look down at Sam sitting in his comfy p-pod (oh how much do I love that chair?!)… at what point did I learn how many breaths per minute was a normal value for a 3 year old?!

Within 30 seconds I’d determined that he was breathing more rapidly and more shallow than usual, he was working a little harder than usual to breath too (barely perceptible changes, but as a special needs mum you just KNOW).

Pale, glassy eyes, looked slightly sweaty and clammy.

I knew what the thermometer would say even before it beeped with the faster beep indicating a temperature of over 38C.

The inquisition began: Had he had calpol yet? Yes, he had. Seizures? Yes, two big clusters, around 4mins for the first, 9 for the second. Oxygen needed? Yes, both times.

Dammit. Every time Sam seems to get a break from the seizure activity, illness strikes and sends him reeling back into Seizure City.

Lots of seizures during the evening, the little dude just wanted to cuddle so took him up to bed with me early evening whereupon he snuggled into me while cuddling his beloved teddy, Mr. Scruffles.

Although his breathing overnight was pants, we got away lightly I think – only a couple more seizures overnight than usual.

And this morning he’s pouring with snot. POURING. As in, we-need-to-take-out-shares-in-kleenex type pouring. BUT for possibly the first time ever, he seems to be dealing with this one pretty well!

Big grins for me and Daddy (best therapy I could ever have that), even if he did insist on wiping his nose down my sleeve when I had a snuggle (I should learn not to wear dark tops); although he’s been quieter than usual, we haven’t (touches wood so so quickly here) ended up in hospital.  For Sam, this is a HUGE achievement.

To me it really emphasizes how incredible our kids are, whether special needs or typical – if I had that level of a cold I promise you I would be feeling very sorry for myself, yet despite all his additional issues this little man is refusing to succumb to the virus.

Only a couple of years ago this would have been a nightmare situation involving long hospital stays, oxygen, antibiotics to fight the inevitable secondary bacterial infections and a very, very poorly child.

When Sam was tiny and we practically lived in the hospital, my incredible Mum said to me that it wouldn’t always be this difficult.

That as he grew and got stronger he would be able to hold his own against the usual infections of childhood.  At the time, we couldn’t even think past that day, let along years into the future. We spent Sam’s entire first winter in hospital, his first birthday too. His second year, it was pretty similar.

Then his third year arrived, and we realised that we hadn’t had a stay on the ward in 4 months.

This winter has been a real pig for illness – the delightful Noro virus came to visit, snotty colds have done the rounds as have the usual run of chest infections/hospital visits BUT no actually hospital STAYS.

For the first time, we have managed to get through winter without being admitted  😀

Cue happy dance!

So, although Sam being poorly is utterly poo and rubbish, it’s really emphasized how far he’s come since the early days.

So, don’t lose hope – if you and your little people are suffering, hang onto the knowledge that they are stronger than you know, tougher than anyone else would believe and more inspiring than you ever imagined possible x

Eating… the Delayed Development Way

I remember asking my Health Visitor how you wean a child who is blind? And she told me that you did it just the same way as you do a neuro-typical child.

As it turned out of course, many, many other factors would come into play to make Alex’s eyesight the least of our worries.

So far down the pile it is – behind inability to walk and talk – that sometimes I’m genuinely surprised to see a note from his school that his visual impairment teacher has been in. But I digress. We started with baby rice (yak!) and moved through to baby porridge, so far so good.

But it turned out Alex had an aversion to a) certain textures and b) chewing. It’s effort Mummy.

So my freezer filled – and filled – with more puree’d and mashed food than I had ever done with Emma.

Night after night I did this as it was impossible to do it during the day.

My fridge covered in meal planners – 2 cubes chicken casserole, 1 cube broccoli (lucky boy) – weeks in advance.

Nursery was a godsend as suddenly it wasn’t just me doing all of this and their kitchen staff were brilliant – never too much trouble to mash/ blend/ serve something else if he just couldn’t manage.

Often he’d use his tongue to help mush it in his mouth. Or pop his thumb in his mouth to help.

It wasn’t pretty, but it was going down.

Delayed development meant his mouth muscles just weren’t there yet and, it turned out, he was too busy just trying to sit upright – there was no cognitive space left over to chew as well.

It was just like trying to pat your head and rub your tummy.

And then he was able to sit up independently. And suddenly, after what felt like an age of puree’d mush, of buying jars to take with us so we could go out somewhere as a family, little cubes of food became an option.

And little cubes became bigger cubes and suicide watch became less of an everyday occurrence (as, yet again, he’d choke on a piece of overly optimistic-sized meat) and he was able to eat every day food cut up into normal sized pieces.

In one of those moments of development not working in isolation… as those muscles improved he was able to make some sounds.

My little boy ‘spoke’. I heard his voice. I cried.

He’s babbling you understand, streams of nonsensical noises ‘dubbuh-dubbuh-dub’ being a particular favourite of mine, but there he is. In the room. Joining in the conversation as only Alex can.

We have a long, long way to go. Alex can finger feed beautifully, but he doesn’t always know when to stop, so you have to watch him the whole time to stop him over-stuffing.

He will pick up a loaded spoon or fork, but hasn’t yet worked out how to dig back in again for a refill. Sometimes he’ll just throw the fork down after taking the food.

This requires patience from us. And a lot of spoons.

But at the back of my mind as I watch my nearly five year old boy being spoon fed, flapping inappropriately, flinging his sippy cup across the floor and I know that – to an outsider – this must seem a ridiculous life to lead…

I am immensely proud of my boy. And I’m proud of my family too. For riding it out. For accepting him for who he is. And for helping make it happen.

Her Ballet Slippers

Aside from these everyday childhood play things, you would find a standing frame, a wheelchair, an iPad filled with communication apps, and a therapy bench.

You see, my daughter has multiple disabilities.

She is unable to walk or talk.

However, she is beautiful, happy, silly and absolutely strong-willed.

She displays more determination in her daily life than most people could begin to imagine. 

While many mothers delight in their daughters taking dance lessons and wearing pretty pink ballet slippers, my daughter wears corrective ankle foot orthotics.

They are chunky and clunky and they come up to her knees.

They provide support for her legs, that severely lack muscle tone.

These AFOs (we Special Needs Parents love our acronyms!) are not made of soft canvas, satin or leather. 

There are no frilly bows accenting them or giving them a sense of dainty girlishness.

They lack soft, flexible soles for easy movement.

They are fashioned of hard plastic, and have thick rubber soles.

In place of delicate lacy ribbons are strong white Velcro straps. 

To make them remotely appealing, I chose to have them made in purple with little butterflies printed on them.

In helping her learn to stand and hopefully someday to walk, they are part of her daily wardrobe.

I cried when she received her first pair of AFOs.

They were such a cold reminder of DISABILITY to me. 

A clinical-looking symbol of what my daughter could NOT do.

They made me more aware of her limitations and I hated that she needed them.

They weren’t the slippers I would have chosen for her to wear, or the ones she was supposed to wear.

But slowly, over time, I began to see the magic in them. 

I started to realize how they were helping her bear weight on her tiny feet and take actual steps in her gait trainer.

It soon became clear that they were aiding her foot positioning and assisting in promoting a sturdy stance.

They were giving her strength.

What once was a hindrance had quickly become an extraordinary benefit. 

My daughter is gaining a graceful sense of freedom from them and my eyes are now open to seeing the amazing things that she is ABLE to do.

They are her ballet slippers.

And someday, I am hopeful to see her dance.


“I’m Not Scared of Having Another Child with Spina Bifida”

My family was the first to ask me if I planned on having more children after Oliver was born.

I took a shallow breath before answering, not just frightened of the increased risk I had for another child to have spina bifida, but the thought of another human being to care for when I am just managing with one little guy.

Three percent.

My chances of having another child with spina bifida is increased by about three percent.

I went home later that day and I couldn’t get the question out of my head.

Of course, I had given no answer to them.

How could I when I was unsure.

It wasn’t as easy as deciding whether or not we could afford another child’s college education, or whether or not we could afford to upgrade to a four bedroom house.

This was my health and the future health of this child.

I suffered from an incompetent cervix during pregnancy, forcing me on bed rest at 24 weeks.

The emotional toll from receiving Oliver’s diagnosis was tremendous.

Could I do it again?

In the beginning I was almost sure that I could not, and that my dream of having at least two children of my own would have to be altered to just one.

But then I realized how much I love Oliver, and how his diagnosis was no worry of my mind anymore.

Sure it was scary in the beginning, we lived everyday with the unknown outcome of his health.

Then came April 11, 2014.

He was the most magnificent thing I had ever laid my eyes on.

He had ten beautiful little fingers and toes, a head full of hair, the longest eye lashes I had ever seen, and even the open lesion on his back was beautiful.

Here we are now, a year later, and his scars are just stories for him to tell one day.

Stories that will tell all of how much he went through, at such a young age.

Days, weeks and months soon past and I no longer found myself scared of this diagnosis.

I knew my answer then and there.

I actually waited for people to soon ask me again if Aaron and I would have another child.

“YES!! Of course”, I would say.

Why wouldn’t we?

I could not have asked for a better child when Oliver was born, and why wouldn’t we want a match to that.

We are enjoying Aaden (Oliver’s amazing big step-brother) and Oliver, so of course we don’t plan on having a baby anytime soon.

And yes, I am sure when that day comes to find out his gender and we get our second trimester screening, I will have that fear.

But we are no longer afraid of the unknown…because we do know now.

We know that spina bifida has never described Oliver, other than in his medical records, and that Oliver has overcome all that spina bifida has put in his way.

We are such adaptable creatures, that we just learn a new way to live life.

We know that Oliver is quiet, he loves laughing, hates tummy time, and loves his apples.

We know that three percent no longer frightens us.

Parents Know Best

Discussion groups have opened my world to friends I would have never met otherwise and my life is richer for it.

Today, one of my friends told me that her doctor did not agree with equipment she was requesting for her child.

It wasn’t anything big, but the doctor thought that her opinion was more important than the parents.

Of course, this can lead to frustration because we are with our children all the time and the doctor may see them once every few months.

Instead of asking more questions about the request, this doctor just said no and moved on with the appointment.

There are times where something is completely against what is safe, necessary or needed for a child.

I understand that.

A doctor or a therapist can see that a certain piece of equipment would not work for a child or a new medication everyone is trying wouldn’t be safe.

Those are the times that a discussion about it and finding an alternative would be necessary.

Sometimes a parent might need education or sometimes it’s about listening to why the parent is asking for something.

Maybe there is a bigger problem to solve.

Other times medical professionals get stuck in a rut and only use certain products, companies, medications or service providers.

That’s when we, as parents, as advocates go to work for our children.

And I would hope any professional would take the time to listen and see that the parent has done their homework.

My genuine wish for all healthcare providers is that they would listen and view us as partners in our children’s care.

I hope that we could solve problems together and each would rely on our own expertise.

After all, we know our children and that is our expertise.

‘Can I Just Take a Shower?’ – Wishful Special Needs Parenting

A full-time, stay at home mom, spending my days like many others.

I get two children off to school, sort the laundry, clean the house (to some degree) and run errands for my family.

I help my son with homework, and then I make dinner every night.

Bath time and bed time routines are an important part of our evening.

These are all familiar activities that so many moms who stay at home raising children experience every day.

Beyond these typical daily duties, I am a Special Needs Mom.

My work day begins at 6:00 am and continues on, sometimes through the night.

Mornings entail measuring medications, bottle feeding my four year old daughter, and sticking to a strict routine to keep my eleven year old son calm and on task.

Hours are spent scheduling physical, occupational, social and equestrian therapy sessions, as well as routine and specialist doctor appointments.

Too many hours to count are logged contacting insurance providers, paying visits to school officials (I’m sure they LOVE to see me coming!), calling pharmacies and medical mobility equipment providers.

Attending therapies, and carrying over the learned methods at home take the place of hours once spent behind a desk in the working world.

Preparing special, high-calorie pureed meals and searching for gluten-free alternatives now replace taking leisurely lunch breaks.

Then, there is the overtime put in researching homeopathic remedies, breakthrough therapies, communication and behavioral tools.

On a really ambitious day, I even manage to take a shower!

These are just some of the duties that I am responsible for in my job description of Special Needs Mom.

These tasks, as mentally taxing and exhausting as they can be, are proudly carried out with love each and every day.

And you must know, they truly yield the most beautiful rewards.

For this line of work, there is no paycheck, and there are no paid vacation or sick days.

However, a bright smile and a giggle from my amazing daughter or a tight hug from my incredible son is PRICELESS compensation.

They make all the difficult moments of my day melt away, and they are worth every second of it.

Life is not easy being a Special Needs Mom, but each day my heart overflows with the joy that my children bring.

I find myself to be so much more grateful at this point in my life than I have ever been.

This roller coaster of a journey that I never expected to take has become the beautiful path that I was always meant to travel.

In Praise of the P-pod

The seat can be moulded to fit the individual child if there are postural implications such as spinal curvature etc., or can be a standard fit.

While not a postural support device it has given Sam a comfortable place to rest and relax… due to his low tone, Sam is very delayed with his motor skills and is very floppy especially when tired; things like sitting on a sofa safely without full support just aren’t possible for him.

When he was dinky, we could sit him on our laps and support his body with our arms/strategically placed cushions… however he is now almost 1m tall and sitting on Mummies lap at least isn’t very comfy anymore!

Enter, the P-Pod. Sam *loves* his p-pod.

He can relax in the seat and go to sleep in there if he so wishes.  When he’s had a seizure and aches all over, we pop him gently into his p-pod and tilt it back so he can fall asleep if he needs to.

The waist straps are wide enough to be comfy but keep him safely in the seat so if he seizures whilst in there he’s safe.   And it’s light enough to move between rooms as needed.

For me the biggest plus is that it looks so awesome! The covers are lovely bright colours (Sam’s is bright blue), can be personalised, and are easy to remove for washing (unlike SOME of his equipment I might add).

It doesn’t scream ‘Special Needs’ at you like the oxygen cylinders, triton postural  support chair and standing frame all do… it just like an incredibly cool beanbag chair 😀 And we all love it completely.

However, getting the funding for one isn’t necessarily simple.

Sam’s former community Physio dislikes them with a passion as they don’t provide suitable postural support…  that is not what they are designed for.

Think of a dining chair – perfectly suited for supporting your posture whilst eating. Now imagine having to sit in that high/rigid back dining chair at ALL TIMES.

Hardly comfy or relaxing are they?!

I agree, Sam needs the firm postural support he gets from his other chair when he is eating, as it keeps him safe and allows him to eat safely… but just because he has additional issues, why should he not be allowed somewhere comfy to just chill out in?

As statutory services are only required to provide one piece of safe sitting equipment for him, they are under no obligation to provide another for the purposes of relaxation.

Fortunately, Sam’s OT agreed that it would be beneficial for him to have a p-pod and supported our application to a charity for help funding it (even though she did get in trouble about it and had to give us written instructions for use to appease PT 😉 ).

I honestly think it’s been one of the best piece of kit Sam has ever had – purely because it allows him to just be a little boy and watch cBeebies in comfort. Cx

I Said It.

What’s worse, they have definitely seen me struggle in to preschool with my son and daughter, pushing the wheelchair, desperately trying to juggle two ruck sacks, two book bags and two lunch boxes along with a huge potty chair and all the while trying to make sure my daughter doesn’t let go of my hand in the car park.

On numerous occasions!

Yet they still think it’s acceptable to park in the disabled bay without a blue badge (or a disability).

The blue badge sign is very, very clear and at eye level when you park, so there is no way they are unaware of what they are doing.

What’s even worse is that the times that I have seen this person parking there, the car park has been pretty empty! Not that it would be an excuse if it was full (I would still be fuming).

It’s just pure laziness and complete ignorance.

No sensible, caring, intelligent person would do this. The icing on the cake is that she is a mother.

She is a mum of a little person the same sort of age as my disabled boy.

Yet she has never thought to put herself in my shoes and think what it would be like if it was her beloved child that she had to watch suffer and struggle every single day!

For that, I can’t forgive her.

She is not a nice human being. So when I wrote the note for her (in black eye-liner, fittingly on the back of a letter from the NHS for one of my son’s physio appointments) I started it with: “I have reported you for repeatedly parking in the disabled car parking spaces without a valid badge. Please stop parking here.”

But there was a bit of room left at the bottom of the paper.

And I was so angry I couldn’t help but scribble “ARSEHOLE” in big, fat, capital letters.

Then I felt a bit guilty.

Then I felt ridiculous for feeling guilty. Then I felt annoyed with myself for not putting something far worse than the A word, but all the while I was shaking feeling like I was the one that was in the wrong.

Which is crazy I know, but it’s how people like this woman make us feel and that makes them even more despicable.

I haven’t seen her park there since (pats self on the back).