Kids With Special Needs: Why, ‘Mama!’ Seems To Be The Hardest Word!

Mother’s Day is a day to be treasured. A day to appreciate your mother for all that she selflessly does and has done for you.

If you are a mother yourself, it is a day to bask in the awesomeness of what you have achieved.

To bring life into this world must be the hardest thing to be asked of anyone!

We celebrated Mother’s Day in the UK in March, in the US and many other countries it was celebrated just last Sunday.  

On both occasions, I felt myself feeling a little apprehensive and well, a little sad.

As my mum friends around the world will no doubt have been showered in love and hugs, all I really wanted from this one day is to hear someone – preferably a child of mine – call me, ‘Mama’. 

That may sound depressing to some or even ungrateful to others, my child lived and believe me I know how lucky I am!

I don’t need validation, I know I am doing a good job of raising my as yet non-verbal 3 year old son with cerebral palsy and 5 month old baby girl.

It just so happens that this year, it will be unlikely that I hear those words. 

That’s not to say that they don’t show me they love me in other ways.

In the early hours of the morning, when I’m feeding my baby girl for the fourth time that night and she looks deeply into my eyes and smiles, that’s enough.

My son may not be able to tell me that he loves me but when he’s crying (his most effective way of communicating) and he reaches out to me – in that one moment – I’m all he needs or wants.

Not Daddy or Grandma, but me.

In that moment I hear the words, ‘Mama, I love you,’ in my heart.

As a special needs parent you learn to celebrate the little things, so that’s what we do as a family.

Next year, I will most likely get my wish. My little girl calling me, ‘Mama’. I will cherish that moment as much as my desire to hear those words from my eldest born, my beautiful boy.

Don’t just celebrate the amazing mothers in your life on one or two days a year, make sure to spread the love all year round and don’t forget to cherish the little things. 

Special Needs Parenting: Learning About Kernicterus The Hard Way…

So, in the last 18 weeks, my family and I have been transported to an alternative universe, one I never anticipated belonging to, one I never gave much thought to and (I’ll be honest) one I barely knew existed.

But here we are in the very special World of Special Needs Parenting.

Our second son Buzz arrived 18 weeks ago, 2 days after Christmas, a spectacularly cute and perfectly tiny person.

We were all besotted with him and everything about him. To cut a very long story very very short he developed jaundice, medical professionals failed to test and treat it or even inform us it could be serious, in fact they kept telling us to stop worrying and we sadly knew no different.

As a result we nearly lost poor little Buzz and he’s been left with a severe form of brain damage called kernicterus. 

It’s safe to say that life, as we knew it, has changed. 

Everything is magnified with a special baby, the good and the bad. Every single day is filled with sadness and terror and magic and meaning.

The sadness I feel at night as Buzz shrieks in agony when the dystonia is at its worst is followed by the pure beauty of the morning when he’s the most charismatic, bubbly, talkative baby I’ve ever known.

If I was into cliches I would say it has been a roller-coaster ride.

Our lives suddenly include hospitals, a super physiotherapist, a teacher for the deaf, Facebook support networks, raising awareness, an assigned hospital paediatrician AND a community paediatrician, OT equipment, hearing tests, eyesight tests, alternative therapies, fundraising, so so many medications, DLA, MRI’s, EEG’s and hundreds of other abbreviations we are in the process of learning.

I’ve changed and grown so much as a person already. 

The self doubt that’s burdened me since I was little has evaporated and been replaced with the spirit of a pitbull!

I’ve found back bone I never knew existed,

I don’t care who you are or what your job title, I know what’s best for my son and I’m no longer afraid to express it.

I’m now an expert in Kernicterus and have already been asked by 2 doctors if I work in the medical profession!

I’ve become more tolerant yet less tolerant all at the same time. I’m more tolerant and understanding of people’s differences and quirks yet I’ve become less tolerant of people grumbling about petty, irrelevant rubbish.

Yes, life has changed, we’ve changed and our friends and family have changed.

So, who knows what the next 18 weeks in this magical yet scary new universe will bring..?

Sorry I Was Late; I Didn’t Want To Come

Picnics do sound amazing. 

The sun shining down on me, warming my skin sounds delightful. 

Spending an afternoon in the summer sun with friends is definitely a dream come true, but bringing our youngest son along isn’t easy.

 As summer approaches I know there will be quite a few invites that we will need to carefully consider.

1. Is there disabled access for his medical stroller or do I need to hold him the entire time?

2. Is there a shaded area or a place for him to cool down?

3. If he loses his mind when we arrive and we have to turn around and go home, will it be worth the drive?

4. Will there be others there willing to help if I’m going alone?

5. How upset will our older son be if/when we have to leave early?

6. Should we drive separate (if my husband is attending) so one of us can stay with the big guy and one of us leave with our youngest?

7. How loud will it be? Will he be able to handle the sensory overload?

8. What will keep him entertained?

9. Will there be anyone who is ill there?

10. Do we risk going not knowing if anyone is ill or has been ill recently?

It’s not that we don’t want to attend. Really, I would love to load up the car without a worry and enjoy the summer weather.

It is just that my list of things to consider may be longer than others.

When attending with a child who cannot sit on a picnic blanket, run around the playground, or splash in the water, there are quite a few more items to think through.

So, if you invite us to an outdoor event, please understand that I may want to come but he may not.

The Marvellous Scooot

It does have to be said. He is desperate to crawl but he can’t yet fully coordinate his arms and legs to get himself moving.

Due to the entire family being struck down with one lurgy or another, it has taken a while for him to actually have a go on it – I have to admit, his initial outing was not a huge success.

Sam hated it, didn’t want to lie on it, kept trying to roll off, refused utterly to put his hands on the floor… you name it, he did it.

This is, however not an uncommon situation with him; most new things are treated with the same level of utter disgust and disdain initially!

In an effort to show Sam that it really isn’t some hideous torture device, Daddy decided to join in and have some fun… by the time I came back into the front room Daddy was sitting on the Scooot and showing Sam how to move it forward… Sam was unimpressed, Daddy was very amused.

Don’t try this at home kids.

After some finger wagging from Mummy and being told he’d better not break it, Daddy relented and Sam had another go.

This time, far less resistance.

Still refusing to fully cooperate but now will at least lie on the thing and seems to enjoy the sensation of moving forward (granted, with Mummy or Daddy guiding him/it).

Our next adventure with the Scooot was far more exciting.

As Sam has the habit of rolling off it, we located a thing called a, ‘Bearhug’, – basically it’s a fabric band with Velcro, that you wrap around your middle. It supports your back and which conveniently wraps around the little dude and his scoot perfectly.

THIS time, Sam felt much more secure and had a darn good go at moving himself forward, cheered on by his (ok, possibly slight over excited) parents!

You have to remember, this is a sight we have waited YEARS to see, our little man able to move himself forward…

Its early days with our Scooot, however I suspect that with repeated use it’ll do wonders for my boy’s independence and confidence.

Here’s to forward motion!

Words that Doctors Should Never Say

These are all words that were spoken to me when I was eight months pregnant.  I was eagerly awaiting my second child.

She had a name, a pretty pink nursery, and a family that was already in love with her.

After an ultrasound picked up birth defects and restricted growth, a doctor will little compassion smashed all of my dreams and hopes by telling me these harsh things.

No matter how grim a situation may appear, there has to be a better approach.  

These words caused me and my husband days of heartbreaking sadness and horrible sleepless nights.

The intervention of a wonderful, compassionate Geneticist ruled out the disorder that our baby was thought to have had.

While questions still loomed and we were four weeks from knowing her exact fate, we had reason to hope.

“We may have to just let nature take its course.”

More agonizing words from yet another doctor, one week before our daughter’s birth.

For a mother that was feeling her baby’s kicks and cartwheels from inside, I didn’t want to hear that.  I refused to digest her words.

We were on pins and needles and wouldn’t know anything definite until her birth, but one thing we did know…. as long as our baby was alive and we could hold and love her, we would have the world.

We would take anything else that came along with her.

Fast forward four years….my daughter is a beautiful, miraculous girl that reminds us daily to hold onto hope.

She has a rare genetic disorder that causes her multiple physical and intellectual disabilities, and she holds our hearts in her tiny hands.

We’re blessed to have her here and she is PERFECT.

Even though our life has taken a different path and our journey is different than we ever expected, we embrace it. We are truly lucky.

We still hear those words from time to time that doctors should never say.

“If a child doesn’t walk by the age of four, the chances are very slim.”

We have met many special needs parents that have children that walked at eight, ten and even twelve years old.  We’ve learned to let words like these roll off of our backs.

We tackle challenges as they come at us and we take what doctors say with a grain of salt.  They clearly don’t know everything.

When I look at my daughter, I see a child that THRIVES, and a girl that is very COMPATIBLE WITH LIFE.

In fact, she gives life new meaning.

If only doctors could put themselves in the shoes of the parents, and fill their vocabulary with more compassionate words.

Parents would not have to hear the words that doctors should never say.

Autism and Picnics – A Bad Combination!

We were having a lovely holiday with our two young children, the sun was shining and we had wonderful plans for a family day out.

We chose our destination, packed the car, organised all the equipment our children needed and set off for our first proper picnic.

We had chosen a castle on a hill with a park for the children to play in after we had eaten.

There was disabled parking and the walk, although uphill, was possible with a wheelchair.

By the time we parked up we were all hungry.

To be fair, my son is pretty much ALWAYS hungry and today was no exception.

Our first challenge was to cross a road.

For the child in the wheelchair this involved screaming, arm throwing and bouncing on the chair.

He sees no reason to wait for anything!

For the other, her anxiety was already off the scale; noise, cars, no sign of traffic lights, feeling the breeze on her skin, shoes on her feet – the list was endless.

We tried not to let their stress affect us.

So, we crossed that road safely and started our short walk.

What we forgot to think about is what is short for us seems never ending for a child with sensory issues!

We ended up resting at every seat we could see and we started to think we would be eating supper never mind lunch!

We soldiered on. The kids cried. We finally found a spot to put our blanket down and we released our eager son from his wheelchair.

And he was off!

Why, oh, why did we not find an enclosed piece of ground?

We chased him. We bribed him.

We were torn between as escaping non verbal severely autistic child and his twin sister frozen with fear and screaming at her brother’s running.

Right at that moment I looked down from the top of the hill and realised our biggest mistake EVER!

Yes, we had a wonderful view of the town below, the countryside in the distance and rooftops.

What we hadn’t noticed was that we also had a birds eye view of a well known fast food restaurant.

Three guesses for where our brown haired boy was heading?

My husband ran like the wind to catch up with my son and since I knew he had a phone I decided to settle my daughter with the delights of our picnic.

Did I mention she is one of the most selective eaters I have ever met?

The sandwiches were too squashed, the fruit was too hard, the crisps didn’t smell right, she could see insects within miles of her, the rug was too scratchy, the wind was too cold – need I go on?

I conceded defeat as she shivered standing on the rug even on the warmest that year. We were tired, stressed and hungry.

In the end the child with the least vocabulary, and the diagnosed learning disability seemed to have the best idea of all.

Autism and picnics for us don’t work.

Food is eaten at a table, warm and inside.

Those are the rules.

I was just glad I had the wheelchair to help me get my daughter down that hill.

We made memories:

They just consisted of nuggets, fries and tomato sauce instead of sandwiches, fruit and salad that day.

Sometimes plans change and that is part of the fun!

Five Tips For Holiday-ing With A Special Needs Child

Every day in our lives as parents to special needs children we encounter things that challenge us.  We just get on with it.

Going on holiday is no different; we are just paying for the privilege of doing it in a different setting.

So, it is imperative to get everything just right, so that the whole family enjoys themselves.

We all work so hard in day-to-day life that we deserve to redeem some quality time to put our worries to one side and let our metaphorical hair down.

We anticipate upcoming holidays with so much excitement because they are often the one and only time in the year that the family can be together properly.

There is so much at stake for that one or two weeks!

Even when we have downtime in our family (which is hardly ever!), it’s not genuine downtime, because I always find something that needs doing, a form that needs filling in, a call that needs to be made, a bunch of clothes that needs to be ironed.

I can no longer allow myself to simply sit back and relax because of the guilt I feel for not doing the jobs that need doing.

Holidays take away the option of doing those jobs, and place you in a position where you are forced to separate yourself from the daily struggles, giving you the opportunity to relax and let yourself forget about those horrible tasks back at home.

The problem is, if a holiday is not chosen wisely and planned properly, you can end up more stressed at the end of it, and need a holiday to recover!

So, here are five basic tips that might help families such as mine to make the most of their valuable time off:

 1. The Stay-cation

A holiday doesn’t have to involve an expensive visit to an overpriced commercial resort or a foreign country.

There are many good reasons to simply stay at home.

Turn off your work emails, dig out a few dust-covered DVDs or board games, search out some local attractions in your area that you simply haven’t had time to visit before, and take some day trips further afield.

Spend quality time as a whole family, where the stresses of everyday life are pushed into the background for a few days.

Children respond to, and savour, the joys of having their parents’ undivided attention and if those parents are relaxed and happy, this can harvest wonderful feelings of togetherness, regardless of whether you are home or away.

Save on the overpriced cost of flights and family accommodation, and use the money to treat your family to some indulgences at home.

 2. The Seaside

Time on the beach can be wonderful therapy for our children.

The freedom of being by the sea, playing in the sand and splashing in the waves can work wonders.

There are so many aids available to help physically disabled children enjoy these things, such as the Upsee for paddling in the sea, or the GoTo Seat for sitting in the sand and making sandcastles.

I have personally found the seaside to be a liberating experience for our whole family; we can be outdoors in the public arena but we have our own private space where we don’t have to worry too much about upsetting others with the clamour that our son makes, or the behavioural differences he may display compared to the next family.

There’s something about the combination of the sea air, the warm sand and the freedom of the ocean that makes for a recipe for a happy family day out.

 3. Happy Parents = Happy Kids

Make sure that the holiday is about fulfilling the child’s needs as much as your own.

Disgruntled parents who are getting under each other’s feet, or who are cheesed off with the low grade accommodation, are a dead-cert for impacting negatively on the whole family experience.

For example, if you have a toddler then it’s unlikely you’ll be going out for romantic dinners in the evenings, so ensure you book accommodation with a decent sized kitchen and dining area, perhaps a sunny terrace, satellite TV, or all of the above!

Why not even indulge in a setting with a whirlpool bath or hot tub, which the whole family can enjoy?!

 4. Do Your Research

More and more attractions these days give concessions for admitting a disabled child so look out for destinations that offer these, to keep the costs down.

Research the attractions for exactly how accessible they are, for instance does a boat trip allow for a wheelchair, and can parents accompany children on the smaller rides?

Use resources like Trip Advisor to see what others have said before you.

Call them in advance and you will be surprised as to how accommodating some attractions can be.

Use social media sites to request some suggestions and advice, there is bound to be someone who lives nearby the place of interest that can give you some invaluable pointers.

 5. Relax!

Use the opportunity of being away from home and everyday life to put your feet up and let your guard down.

Try to be more relaxed about doing things that you might not choose to do at home.

For example, if you avoid soft play because of the difficulties of carting your child to the top of the slide or the awkwardness you feel about the looks and glances from other parents, a holiday is a good time to expose yourself to these things.

You might surprise yourself with how much better and easier things are when you are relaxed.

Plus, everyone around you is a stranger therefore you will care less.

Maybe use the holidaying experience to experiment with changes that you had been toying with but hadn’t got around to, for example dropping a child’s nap, or feeding in public.


Whatever your choice of holiday, enjoy some wonderful and well-deserved time with your family…. You deserve it!

Happy Holidays!

A Tale of Unsuccessful Potty Training

Due to traffic, the drive took me five times longer than usual.

Slow and steady finally got us to the hospital campus.  I parked, turned the car off, and sighed triumphantly.

My toddler cheered from the backseat.  “You did it!”

I giggled. I guess I did.

I carried our nearly 40-pound child into the clinic.  A mitten dropped as we pushed through the revolving door, and I swear we almost died as I bent down to pick it up while continuing to walk forward — all while he was making the, “Wheels Go Round”, hand motions for, “The Wheels On The Bus.”

I ran down the hallway (it was more of a shuffle-hop-shuffle-sprint).

An elderly woman tried not to stare at the sloppy commotion, my son already bellowing for his post-appointment sucker.

I watched her steal glances over the top of her Southern Living magazine.

Something about her awkward grimace told me that she probably had once upon a time done this much more gracefully with four children, two in cloth diapers, with a perfect pompadour hairstyle to boot.

I tried to shuffle faster.

The strap of his backpack was strangling me.

I hoped we weren’t so late that we’d have to reschedule, which would mean I’d have to schedule/re-schedule/schedule/re-schedule his other weekly therapy appointments.

I felt something trickle down my back, hitting the top of my jeans.


Sweat or melted snow?


My son’s cup had tipped while we were running.

It was apple juice.

It was an appointment to check to see if we needed another surgery.

Once we were in a waiting room, our urologist examined him.

He did not need a third surgery.

Things were healing beautifully.

She asked me about potty training.  I stammered.

My son is three.

We first started training at about 30 months.

We started at that time because he showed signs of understanding all the fundamentals: what pee and poop are, where we go, flush and wash, how to hold it and keep underwear dry, even elephants do it, etc.

He also started removing his own diaper.

He couldn’t yet undress himself, get on the toilet alone, or wipe by himself, but I was there to help him each time.

We went a full week in underwear and only two minor accidents.

I was a cocky little parent about that week of potty training.

You see, we have been delayed in pretty much every developmental milestone under the sun.

Yet here he was, wearing dry underpants.

And he wasn’t yet three.

Which meant… we were on time!

I celebrated too soon.

By the end of the week, he saw past the gummy treats and train stickers.  He grew irritated by the potty dance and cheering.

He realized he could call the shots.

He was the one who said when he wanted to go and when he didn’t.

I could tell him when, I could haul him into the bathroom, I could plop him up on the seat.

But he was the one who let out his stream.

So he started to hold in his pee.

He refused to go at all, diaper or potty.

He held it for hours upon hours.

One time, he passed 24 hours of holding his urine.

It was a true and total power struggle.

“So,” I humbly confessed to the urologist, “he’s not potty trained.”

She laughed, took off her glasses.

“Listen, the train-your-kid-in-three-days is a marketing gig.  It sells books.  For some kids, it works.  That’s great!  For others, it doesn’t.  Your job is to be patient for when he is ready.  You have time.  Your son is delayed, and that is OK.”

I realized that his potty training was less about him and all about my desire to finally check off a box on a milestone list that wasn’t in the, “when you should be concerned”, section.

Over the years, I suppose I’ve grown a bit bitter about milestones.

There’s something about special needs parenting where milestones quickly lose their magical glimmer.

It gradually becomes less about celebrating and more about breath-holding.

Less about what actually happens at three and four years old and more about what we fear will still be happening at twelve years old, or twenty years old.

However, I’ve found that my son’s preschool has a perfect group-time motto that can be applied to toilet-training: eyes are watching, ears are listening, voices quiet, bodies calm.

I listen to the opinion of trusted advisors (like our smartie-pants urologist) for when to push and when to pull back.

I watch for my son’s developmental cues.

I keep myself chill and trust my intuition.

And if we’re late, we’re late.

Just like driving in a snowstorm, sliding on ice into the parking lot, tramping in boots (and practically falling) our way into the clinic — looking like a crazy disheveled, sticky mess of a mom and son.

You think you’re never going to make it.  People watch you as you’re going down in flames, shaking their heads.

But we still did it.

And we did it together.

The Constant Fight of an Autism Mom

When you finally have a firm diagnosis on paper, after waiting anxiously and patiently for it, you think that things will easily fall into place.

The missing piece to your child’s puzzle has been found, and services will magically open up and be made available, right?


Hundreds of phone calls to service coordinators, government agencies, insurance companies and mental health and behavioral specialists have left me with the wind knocked out of me.

A school system that places more importance on the COST of school services for your child than the child’s actual well-being….accommodations that are written as a plan to be followed for your child but fall by the wayside: these things force us Autism Moms to FIGHT.

When an IEP is changed and your child loses invaluable services, the battle within you wages on.

When a Shadow is denied for your child because it’s too, “costly”, you make more phone calls, write emails and letters, securing your place in boxing ring.

You learn to fight for your child at all costs.

I have been in matches and gone round and round with different agencies, school officials, and insurance companies.

My son is eleven years old.

I am a seasoned fighter.

I have pulled my son from school, and turned our dining room into a home-school learning environment.

I have painstakingly sought out Autism Spectrum Disorder groups for him, argued with doctors about needed medications and begged the system for help with expensive, necessary therapies.

I have given dirty looks to strangers when I felt them staring at us in public – times when life was overwhelming for my child – when the movie theatre was too loud, the circus was too crowded and the restaurant’s smells were too pungent.

I have fought for him, and with every breath in me, I will continue to fight for him.

The fight is one thing that has remained constant over time.

I won’t be retiring from the ring anytime soon.

He is worth every blow, every punch and every swing that comes our way.