Special Needs Parenting: A ‘Thank You’ to Teachers and Therapists

To witness all the things that she cannot tell me about.

To see how her teachers interact with her.

Experience how her therapists work with her.

Feel the love and dedication of everyone that she comes into contact with.

Today is no exception, as I gaze through the crack in the open door, I see three happy and engaged children and one very animated teacher singing into a voice playback device.

It is days like today, when I see a side of my daughter that rarely is seen outside of the comfort of our own home, that I know that she is in the right place.

Mia has been in kindergarten since August of this past year.

Kindergarten starts at the age of four where we live and runs two years in length.

When a child is at the young end of age four, parents can decide to wait a year to send their child.

Even though Mia was only two days shy of the cut off date to even make it into the kindergarten start, we decided with a healthy leap of faith that this was the right time for her.

The school we chose is specialized in working with children with multiple handicaps, and is also a competence centre for those with visual and hearing disability, as well as other sensory disorders.

Finally all her therapies would be under own roof.

One integrated and interdisciplinary team to help Mia.

What a change from the marathon of appointments that we have had over the last four years.

Sending any child to school, special needs or not means letting go and trusting in your child’s teachers.

When your child is non-verbal it is scary to send them off, not knowing how they feel about their time away from home.

What if she doesn’t like school and can’t tell me?

What if her teachers can’t read her needs and she suffers?

What if she feels abandoned that I don’t accompany her to school?

Luckily, all these questions in my head have been answered without me ever having to really ask.

I visited Mia’s classroom four days after her new teacher started working with her.

In that short amount of time, her teacher had discovered Mia’s favourite activities, without me ever having to say anything.

So in reflecting back on the last half a year of school, I’d like to say, ’thank you’ to her teachers and therapists:

You took the time to see Mia as an individual.

You made it your priority to adapt and refine activities to meet Mia’s needs, even custom sewing items and crafting sensory devices for her to use in the classroom and at home.

I see the look on Mia’s face when she is in the classroom—and it is one of pure happiness.

It is a look that is rare to see in a new environment.

Thanks for making her feel at home.

There are days that Mia arrives home with the bus, that I can tell she is not feeling well or has had a hard day, just by how she is sitting or holding her head.

No sooner is she in the house, I get a call from you to tell me, what I already know.

Thank you for being so in-tune to my daughter’s needs that you take the time to call me.

But it is with mixed mommy feelings that I notice that Mia gets excited in the morning when she ride the bus lift in her wheelchair.

She is happy to go to school.

Any fear that she would feel abandoned that I don’t accompany her are gone.

Thank you for creating an environment where Mia looks forward to spending her days.

My daughter looks forward to her time in school.

She is understood.

Her needs are not just met—they are surpassed.

What more could parents ask for?

Thank you.

Do We Need to be Cruel to be Kind?

If we pushed our son more. If we insisted that he do more stretches and more physio. If we told him categorically that he has to wear his gaiters/his special boots/his Lycra shorts every day.

Perhaps if we did all these things, he may be more mobile now.

In fact, I think he probably would be.

I believe this is the opinion of some of his therapists and doctors and even some friends.

Although they are very kind and don’t say so in as many words, you can tell what they’re thinking.

This hurts. It makes us feel as if we aren’t doing the best for our son. When of course, all we want is for him to be as mobile as possible.

For him to have more independence and freedom to explore.

But the reality is, he doesn’t like doing these things. He really doesn’t. And boy does he let you know about it!

So much so, that we very often give up trying.

Because we feel sorry for him.

I hate that we feel sorry for him. It seems so wrong, but we genuinely do. I feel dreadful for him every day and would change places with him in a heartbeat.

And because we don’t have the energy to fight him on it. So we feel guilty and we feel that we are being judged for not helping him to achieve more.

But shouldn’t we be listening to him? He’s not sitting on the fence. He’s adamant that he doesn’t want to do these things and that’s one of the only things he has control over.

He doesn’t see his twin sister in a walker or doing exercises. He sees her jumping on the sofa, doing puzzles, playing in the garden and reading stories to her teddies.

That’s all he wants too isn’t it? To have fun. To be a four-year-old.

So should I feel proud of myself for allowing him to be free to watch back-to-back Thomas and Friends, whilst eating biscuits draped over the sofa (in a position his therapists would crucify me for), instead of spending some quality time in his standing frame learning how to hold a pencil? And then there is the other issue of time.

How on earth would we find the time to do everything that is needed to ‘bring him on’ faster anyway?

He has very little sleep, so is exhausted most days. As are we. He doesn’t eat well, so mealtimes are long and stressful and take up a significant part of the day.

We have pre-school and horse riding, family visitors, hospital appointments. Plus we have another child. She can’t be forgotten and has to put up with a lot as it is.

There is barely a minute to breathe and there is definitely no time for housework.

Most days I feel grateful just to have gotten them in to bed in one piece.

I wish he would let us push him more. But he won’t at the moment and if we do, I think he will just end up more cross and frustrated.

For now I am just going to have to learn to be grateful for what we do achieve. We do lots through play and that is helping. But it’s slow progress and that’s a worry.

Especially as we prepare him for school this September (gulp!). But that’s another story altogether….

Hooray for Mr Tumble!

If you are in the UK and familiar with children’s television I am sure you will know that this is a well known phrase from the programme ‘Something Special’.

This is the ‘magic’ we have to use to send the spotty bag to Justin or Mr Tumble.

Now, I am the grand old age of 32 and I think that this is the best programme on television.

And, I mean that seriously.

It may be aimed at children but this programme is important.

It is important as it is aimed at children with special needs but is also important as it includes children with special needs within the programme.

It also uses Makaton, which is a form of sign language.

As far as I am aware there are no other programmes like this out there.

The programme is presented by Justin Fletcher MBE and he also plays the characters of the much loved clown, Mr Tumble (sshh, don’t tell the kids), Grandad Tumble, Lord Tumble, Aunt Polly to name but a few.

Basically, Mr Tumble will send his spotty bag to Justin via the ‘magic’.

Inside the spotty bag is the Tumble Tap (it used to be photographs, but they have upgraded to a tablet now) and Justin and his friends (the children) who could be at the zoo, a water park, shopping etc need to find the three ‘special’ things that Mr Tumble has pictures of on the Tumble Tap.

Once they have found all the items and the children have said goodbye to Justin, the spotty bag is sent back to Mr Tumble via the ‘magic’ again.

The basic format of each programme remains the same.

There is a lot of repetition and learning of different signs which is great.

I have learnt a lot of signing from this programme.

Unfortunately, the sign for ‘naughty’ is probably the one that is used most in our household.

Not on Oscar though, but daddy and Pebbles!

I first discovered this programme when I was on maternity leave.

I was fascinated by it (as you can tell, I still am) and thought it was brilliant as it included special needs children and felt it was great that they had not been left out.

The fact it is educational and taught all children signing (regardless of whether they have special needs or not) was also fantastic.

I did not even know then, what I know now.

That my child has special needs.

Oscar loves this programme and I mean LOVES.

It is the one of the only programmes that he takes a real interest in.

Although, he is non-verbal he does occasionally say the odd word or two.

Recently, whilst watching “Something Special’ he shouted ‘Mr Tumble’.

It was not perfectly clear but you could tell that is what he had said.

Also, when Mr Tumble was saying thank you for the safe return of his spotty bag, Oscar said ‘You’re welcome’.

As you can imagine, this absolutely made our day.

I know we may never hear Oscar say these words again but I know they are there.

If you have never seen this programme, please try and track it down.

I promise you, it is worth it.

World Down Syndrome Day 2015

We had the night of our lives at the Lancashire Cup Final where the girls were mascots of the victors Chorley FC who wore a special pink kit for the occasion.

It was a great way of raising awareness during such a week.

Then midweek Jodi was interviewed on ITV television which can be seen here – http://t.co/NgVAKUmEkE whilst I did local radio, it’s been a manic few days.

Today the girls will lead out Rochdale FC when they take the field in their Division 1 clash.

The lads at Rochdale will all be wearing Pink T Shirts during their warm up as will Chorley.

The Down Syndrome Community has the support of a Boxing World Champion, an International Rugby superstar and the Lancashire County Cricket club on their tour in Dubai.

In all people around the world will be flying our flag and raising vital awareness of Down Syndrome.

I’m sure come Monday we will be ready for a rest x

Life, According to Sam

The story of the secret garden is one of discovery and realising the value of friendship and love, and of overcoming heartache and obstacles, so for me it couldn’t be a more appropriate piece of music to start writing to.

Sam was born healthy and well after a somewhat rushed arrival into the world; the pregnancy had been difficult for me due to my own health issues and despite Sam suddenly deciding to stop growing and arrive a few weeks early by emergency induction, I was just over the moon that our little boy was here, safe and sound.

We had significant issues getting him feeding, and a mess up there over his blood samples meant he was left dangerously dehydrated and we were stuck for a week on the post-natal ward.

However once home, things settled into a typical pattern of feeds, sleeping (him, not us), nappies etc.

Then at 14 weeks old Sam experienced a seizure and our world turned upside down.

In a matter of hours, Sam had been through a barrage of tests to rule out particular horrors such as haemorrhage, tumour etc., while the seizures continued to hammer him, hard.

They did eventually stop thanks to the amazing staff in the childrens ward, who never once left us that night. In the morning we learnt that our beautiful baby boy had epilepsy; and we assumed that we’d get him started on medication and would never need to see another seizure again.

After all, epilepsy is the most common neurological disorder in the world, how bad could it be?

We soon learned that epilepsy is a nasty, vicious creature, as our baby boy battled hard to live as the seizures torn into him relentlessly.

He developed a rare but catastrophic form of epilepsy called infantile spasms, his seizures simply refused to be controlled by any medication we tried and we could do nothing but watch helplessly as our boys development came to a complete halt.

We wondered, more than once, if we’d ever be able to bring him home… if he survived.

The medical team worked tirelessly to help him, but the look in their eyes of sadness and pity told us far more than their reassuring words that sometimes it just takes a long time to find the right meds combination.

By the end of Sams first year he was like a new-born; the seizures were every few hours and our gorgeous little boy was gaunt, exhausted and had virtually no quality of life.

Our hearts were utterly shattered and any hopes/dreams we’d had for our first (and only) child were long gone.

Grief is a funny old process.

It doesn’t have any time limits, and no two people will experience it in quite the same ways.

I went through a very difficult period when Sam was very small, where I simply didn’t know what was happening and could only survive a day at a time, holding onto my husband and child for all I was worth.

My health both physical and mental suffered terribly.

I still grief for what COULD have been, and there are still days when the feeling of guilt is almost overwhelming.

But I do know that none of this is anyones fault. Sam is exactly the person he was MEANT to be.

This is how he was made, and this is how he is.

Without his challenges, I doubt he’d be the same child he is now.

Fast forward to March 2015 – Sam is more gorgeous that ever 😉

He’s a cheeky monkey who has defied the brutal prognosis of his early days and far from being almost vegetative, he is funny, happy, loving, and a menace who thinks it’s funny to wake his parents up at all hours!

In 2013 we finally found part of the answer to why Sam experiences such a difficult to control form of epilepsy – he has a rare brain malformation called polymicrogyria (pmg for short), that affects both sides of his brain at the frontal lobes.

His prognosis is still poor – likely to be dependent on carers all his life, severe learning disabilities, cortical visual impairment due to the severity of the seizure activity (Sam is registered blind) etc., but he’s far more than that.

His vision has improved with intensive therapy to the point where he CAN see albeit not very far; he knows who we are and loves us as much as we love him… he gives great cuddles and has a smile that outshines the sun.

Sam is by far and away the greatest gift in the world, he’s changed our lives in ways we could never have imagined and changed us for the better too.

If I could go back in time to visit myself at the very start of our journey with Sam I’d be able to say that it really is going to be ok – everyone tells you that at the start but you don’t really believe them.

But it really, really, is OK – life isn’t about what we’re given but about what we make of it!

I will admit, in my darkest hours I wondered how on earth we’d ever cope and grieved for the life Sam should have had and that WE should have had.

There are still bad days but they’re outnumbered 100 to 1 by the good days – when I come home from work and am welcomed back with a huge grin from my little monkey, and a massive snuggle to make the day all better 🙂

Special needs are scary, and finding out that your much longed for baby has huge mountains to climb is soul destroying if you let it be; Sam, his Dad and me stand side by side in our journey together, we’re not sure where the destination is but we’re going to make sure we enjoy the ride.


I have been amazed at how our girl has blossomed. She has gained weight, she has outgrown many clothing sizes and she went from barely sitting up to now walking with assistance.

She has learned to communicate by using sign language and she is hearing with the assistance of a cochlear implant.

Even with all the discoveries, we still have many unanswered questions.

Our medical paperwork has huge blanks due to her medical history and family history being unknown.

Last week, our doctor suggested that we explore the field of genetics for more answers.

We will be going to a genetics clinic later on this month and begin testing in hopes of learning more about Afua.

A part of me is excited to gain more information and a part of me is nervous that we may find something more devastating.

But like our Doctor said, knowledge is power and we can be more proactive about Afua’s care once we know more.

The Positive Side of My Daughter’s Disability

I was born into a family that always saw the worst aspect of anything and everything that ever happened.

Even if what happened was really a good thing! I grew up believing that the glass was always half empty and never half full!

My family members thrived on doom and gloom and their own misery!

They wallowed in their own unhappiness without restraint and attempted to seduce anyone who crossed their path into joining them

I hate to admit it, but as a result of growing up in such a hotbed of wretchedness, I often wrestle with my own distorted way of looking at life.

I certainly don’t have to stretch my imagination very far or need any help in order to find something to darken my day or dampen my mood!

Negativity is in my genes!

Of course, having a child who was diagnosed with a brain tumor at age two and then disabled by the surgery to remove it has given me lot’s of fuel for my “negativity” fire!

Yet even though it’s an ongoing struggle for me, I long to see my world through rose colored glasses!

I crave positivity! I yearn to see the good in all things!

As difficult as it is, I am striving to become more aware of and focus on all of Bethany’s good, positive, and happy moments as well as call attention to and celebrate her many awesome accomplishments, achievements, and improvements!

Below are just a few of the positive characteristics of Bethany’s disability that I am choosing to focus on and celebrate!

• Bethany has absolutely no low self esteem issues. She does not worry about keeping up her appearance or image.

In fact, I doubt that she even has a self image at all!

She doesn’t fret about what she looks like, or her weight, or if she’s wearing the latest styles! Neither does she worry about being popular.

• Bethany simply does not comprehend that there are people who might judge her by the way she looks or acts!

She doesn’t recognize when people make fun of her and she’s completely oblivious to people staring at her when they notice that she’s not acting her age, that she talks funny, or when she’s having a seizure in public.

• Bethany accepts everyone just as they are.

She doesn’t judge people in any way whatsoever- not by the color of their skin, their religious beliefs, their lifestyle choices, the way they look, the clothes they wear, or how much money they make.

Making fun of anyone is not even within her ability.

• Bethany is satisfied and content with a few very basic and simple pleasures in life, like following her routine, watching her movies, tapping her craft rocks, playing games, going for a ride in the car, and playing with her friends at club.

She has absolutely no desire for expensive video game systems, diamond rings, stylish clothes, money, or fancy sports cars.

Though I must admit, she does love her technological devices!

• Bethany does not get frightened about things like being in the dark, bad people, getting hurt, or even what will happen to her in the future.

She has absolutely no concept of the future, that there are bad people in the world who might wish to harm her, or that the boogeyman might be hiding under her bed at night.

• Bethany will always be my sweet and innocent little girl with a childlike faith in God and humanity!

Even though Bethany’s disabilities come with daily struggles, challenges and occasional heartaches I will continue to search for and celebrate the positive in even the most negative of situations!

The Ominous “First Year”

I was told that the appointments would die down, we would accept what happened a little better and we’d have time to digest what had happened before we were plunged into this crazy world of cerebral palsy and tube feeding.

The intensity of raw emotion is something that I don’t think many people will experience in their lifetime.

This time last year I was full term pregnant and desperately hoping for my little bundle of joy to arrive soon.

You have these idyllic images in your head of baking together, painting together, going on walks, those first words, those first steps etc.

I became so impatient in my pregnancy as the discomfort grew.

I had a sweep and was due another but my waters broke.

Next thing the contractions started and we rushed to the local hospital.

The heartbeat slowed down and in the end I was rushed for an emergency c-section.

It took 8 minutes to bring our little girl back to life and then she was rushed to the city hospital for cooling treatment as she had sustained a severe brain injury.

We were told she may not make it through the night and that if she did she would be a “total vegetable”.

We never gave up hope, not at all. As the weeks went by our little girl grew stronger.

By this point we were tube feeding experts and were learning as much as we could to facilitate getting her home faster.

Eventually she was home with us and we were still in a deep state of trauma from what had happened.

The trauma of the past, the difficult present, and the uncertain future.

Every professional through our door was a well meaning but painful reminder of the severity of the situation.

We learned how to put on brave faces and how to get by on almost no sleep.

As time went on, surgeries happened, hundreds of hospital appointments and home visits the routine started to set.

You become sort of numb to it all but every now and then something will just rise on up out of nowhere and smack you in the face and it’s “Boom. Feeding issues. Boom. Mobility issues. Boom. Money issues” etc.

I genuinely think the first year will indeed be our hardest.

The first Birthday will be full of joy, gratitude, grief, anxiety, hope, anger, celebration, sadness and so much more.

A nurse said to us at the start there will be good days and bad days. I can see that today is a bad day, but just wait for tomorrow and it’ll be okay.

Our appointments are actually on the increase as we are planning to learn sign language, attend messy play to help with feeding issues, constant dietitian appointments for g-tube related feeding issues, physio (soon to be group physio) and various other things.

I am learning to enjoy the appointments now and to view them as giving our daughter the best opportunity possible to achieve her full potential.

I love our specialists, they are all genuinely dedicated to helping us and can all see how full of promise our bright little girl is.

For anyone earlier into the journey than myself – A few things I wish I had known back start.

Your baby is so tiny right now… they don’t stay that way long… whilst this is a difficult time do enjoy every nice part of this that you possibly can.

Accept help – you are not weak for needing help. If you are struggling mentally then go to a doctor – you are not weak… your brain might not be releasing the chemicals you need to cope with this very unexpected and trying situation.

Stay strong, rest as much as you can (easier said than done).

A diagnosis does not define your child, your child’s “limitations” are merely challenges, it does not reflect your child’s amazing personality, eagerness to learn, and cute traits.

For anyone further into the journey than us – continue being you, and being a huge inspiration for us at the start of this.

Happy Birthday to our amazing Amy-Rose.

You have been through more in your first 12 months than most of us have in our entire lives and you are our world.

I’d like to take this opportunity to send out a massive thank you to absolutely everyone who has supported us in this last year.

To friends and family that have been there for the tears, but also been there for the amazing parts.

Rare Conditions Are An All-Too-Common Story

I’d been waiting all afternoon to talk to the attending doctor, and he still hadn’t arrived by eight in the evening.

But as luck would have it, he of course arrived at my daughter’s bedside just minutes after I’d left the unit.

My husband was still there pacing back and forth like a point guard next to Mia’s bedside, so I knew she was in good hands.

The long awaited talk with the attending doctor is always a special occasion in the hospital, not only because we get to talk to the person that is calling the shots, but because it is also the chance to explain the intricacies of our daughter’s rare diagnosis.

Being able to convey these details sometimes can make a difference in the clinical care that is provided.

Carrying the badge of a rare diagnosis means that nine times out of ten, even the most versed doctor will not have heard of your child’s condition—or let alone even met another child with the same diagnosis.

It also means that the hidden unknowns of the rare disease can often cause surprise side effects to typical medical interventions.

Parents of children with rare diagnoses spend a great deal of time researching and networking through the glory of today’s social networks.

Gathering information and anecdotal experiences, basically anything that can paint a picture of the rare condition at hand and hopefully allow for some insight into medical care.

My husband did his best to convey the prevailing characteristics of our daughter’s diagnosis, even spelling out the syndrome twice to ensure that the doctor could do his own research.

So I was a little surprised, when I later read the patient medical history, which read, ‘Patient has an extremely rare genetic disorder called Phasing McMurphy Syndrome. It is not listed in any database.’

I had to laugh at that one, it sounded more like a popular pub than a diagnosis to be reckoned with.

My daughter has a rare syndrome, but it actually is recognized internationally with an estimated 1,000 children and adults currently diagnosed worldwide.

She happens to be the only registered case in Switzerland, even though statistically there should be more.

It is called Phelan Mcdermid Syndrome (P-MS), and involves a micro deletion on chromosome 22, so it is sometimes also referred to as 22q.13 Deletion Syndrome.

Sadly, this is not an isolated scenario.

Families with rare diagnosis children are born into the role of advocate from day one, mostly out of necessity.