Find the Ability in the Disability

They got so carried away with the idea of what Zachariah should be, what he should look like and what he should be able to do, that it appeared to reflect that this person didn’t want to celebrate who Zachariah already was.

For a mother to hear these things spoken over her son was the most heartbreaking thing, it saddened me also that they were obviously missing the joy and love Zachariah brings.

Now, being a Christian myself, I value the power of prayer and I know that God can heal, he can change things but I also know that God makes every child in his own image regardless of their disabilities, ‘imperfections’ and looks.

With God there are no limitations and we all have something to make us special and unique.

I believe that we should have hope that Zachariah may one day be healed of his epilepsy and lissencephaly, and I truly believe there is hope that his eyesight will develop, but I also thank God every single day for giving me Zachariah and feel blessed to have such a beautiful son.

It would seem that sometimes people can get so wrapped up in what they believe things should be like that they completely miss what is shining right in front of them.

There is so much time used to try and fix things, try and change things that the whole moment of celebrating each person for who they are is missed.

Something else that really hurt me was they said that another child who they believed to be the same as Zachariah had been healed and is now ‘normal’, and they believed that Zachariah too could be made ‘normal’.

What I would like to know is how can you say two children are the same and what the heck is normal?

Who earns the right to define what normal is when we are all meant to express our own unique selves?

I truly hold on to the fact that every child is made in God’s image, every child is made to be unique and special and every child has their own right to be treasured, celebrated and held up to flourish.

This made me think about how the world views disabilities and I’m not sure those with disabilities are treated with respect and/or taken seriously.

A pastor of another church once said that if they were change anything about their disabilities it would be prejudice against them and all the other people with disabilities.

Let’s stop this stigma, let’s create a world where we celebrate everybody, and although we can have hope for cures and healing we also have to have the balance of acceptance.

Look at the abilities rather than the disabilities and perceptions can be changed. Zachariah has the ability to make a whole room smile just by entering the room, he has the most amazing drumming skills and has a beautiful singing voice.

Zachariah has a cheeky side that makes you laugh, and a loving side that makes you feel warm inside.

He is the most beautiful boy I have laid eyes on and I celebrate him and thank God for him every single day.

I love my son!

I Have Learned a Lesson

Picture the scene – The opthalmology waiting room at your local hospital.

It’s a standard waiting room really except there are no magazines, the coffee shop always seems to be closed, the water machine always empty, and difficult to negotiate with a wheelchair when as busy as it was this day.

We got there on time but as usual the appointment was running late, even at 09:30am.

I had exhausted every toy in the bag – Amy hasn’t a lot of patience for waiting rooms (understandably) and I was trying my best to not yet play the ipad card in desperate hope of keeping the peace screen free.

The other children around us were seemingly well behaving and I felt a twang of grief in my heart as I thought about how difficult it is getting out of the house and then attending an appointment.

A member of staff popped out again and said “I’m really sorry Ms Madeupname’s clinic is running now an hour and a half behind”. I hunched over further and sunk further back into my seat.

Amy was meant to be at nursery right now, I had so much to do with my day.

I started to feel a bit bitter – I thought to myself “I bet none of these people here have about 50 syringes to wash, an entire bedroom to practically fumigate like I do daily (don’t ask!), a massive prescription to collect, phone calls to OTs/GPs, emails to dieticians and so on.

I sat thinking what a raw deal this was and how I didn’t even want Amy’s MRI results – I am confident that in spite of an astigmatism and strabismus – her vision is pretty fantastic; especially when you consider that she showed no signs of vision at all for the first few months of her life.

The lady next to me turned to me and said “I love your daughter’s shoes”. Thanks I said, they’re pretty awesome aren’t they.

My mum and dad got them for her – they are 5 sizes bigger than her feet to accommodate her splints” I laughed.

Amy actually has very small feet for her age and now she has giant feet thanks to the AFOs.

Unexpectedly the lady responded “we have that problem too”.. I looked over and yes… her daughter also had AFOs! They were well disgused under some amazing my little pony leggings.

This mum was an AFO pro, I was instantly impressed.. and also taken aback at how I had deemed their situation so much easier than ours.

To me I had seen a little girl doing well at communicating her wants and needs and walking around with relative ease.

Conversation turned to Amy’s tube – A popular talking point amongst strangers as it is so blatantly displayed on the back of her wheelchair with tubes protruding from under her chair harness.

“My little girl struggles with fluids” she said. “Really? How do you keep her hydrated” I asked. “Through her gastrostomy” she responded.

I must have looked visibly shocked as she laughed and said “Haha, it is discreet isn’t it when not connected to anything?!”

I instantly felt awful. Why had I judged her? I don’t know their story.

As it happens, her daughter actually has a rare chromosome disorder. She has a tube, AFOs, a hearing aid, and had recently endured surgery on her eyes. What a little superstar.

Don’t get me wrong, all kids are awesome… Obviously I just have a special place in my heart for any child who even remotely reminds me of Amy.

The moral of the story is – NEVER ASSUME!

I am one of these people who will share every photo about invisible disabilities and never judging a book by the cover and so on…

You will never fully know what is going on in people’s lives and should always remain humble and be kind.

Don’t compare yourself to others, we’re all fighting our own battle.

Similarly, I recently found out one of the workers at a business near our house has a wife who suffered a brain injury a few years ago… I only happened to find out when we were discussing our new wheelchair van and I was so shocked that someone so young had gone through so much.

I had always seen him coming and going from work and secretly envying his “normal” life.

I sometimes think full time workers have a lot of stress, but at least they clock out and go home and can switch off… but no, that isn’t always the case and I should learn to be more open minded.

I sometimes wonder how I am perceived by the public when I am not out with Amy.

Do they just see an almost 30 year old girl with daft piercings wearing all black and shopping on a weekday and think “benefits scrounger” or “lazy”?

Because I am a dedicated mum, a hard worker, a full time carer, full time worrier.

I can understand why they might think that up on viewing me and knowing nothing about me.. it sort of reminds me of when people assume homeless people are “drug addicts” and it is “their fault” they are homeless. Not true folks. I defy you not to turn to drugs or alcohol to endure nights on the street.

Obviously I can’t vouch for every situation but what I am trying to convey is that you shouldn’t judge unless you know the full story – and even then… show some compassion and learn that your first impression is not always a true one.

I feel so humbled for meeting that mum. Her daughter really loved Amy and even made us come and sit back with her after our appointment. She really was a little treasure.

I asked her mum if she had facebook. She didn’t (That or she thought yes I do but you’re not adding me!!). So chances are I may never see her again.

But if I do, I’d like to tell her how she and her child altered my mood dramatically that day and made me think about first impressions and assumptions.

I came away with positive MRI results for Amy, and a renewed energy and appreciation for life.

If Only These Were April Fools!

April the first is known as a day for spreading practical jokes and hoaxes.

Sadly sometimes as a special needs parent it feels like everyday is April Fools as members of the public, and even at times schools and professionals, say things that are absolutely crazy.

I know I have had some really bizarre and funny things said to me about my two children with autism but I decided to see if anyone else had had anything strange or silly said to them too.

Here is a collection of what people told me. All of these are true accounts:

1. Now your child has glasses it will cure his autism.

2. The best way to stop your child from smearing is to change him more often.

3. Your child’s difficulties are because you worked while you were pregnant.

4. Your children have autism because you don’t love them enough.

5. They probably have autism because they are twins. Twins always have problems you know.

6. It is because you had post natal depression. You are to blame for your child being disabled.

7. Your child is like that because you are not strict enough with them. They would never be like that if they were mine!

8. Are you sure they have autism? They don’t look autistic to me!

9. Vegetables, your child needs to eat more greens and then they will be fine.

10. It is because you breast fed them for far too long!

11. Your child needs to control themselves better.

12. Are you sure it isn’t you with the problem? Have you thought about counselling?

13. You must have really done something terrible in a past life to have a child who is blind.

14. Have you tried praying more?

15. She is non verbal because you don’t speak to her often enough.

16. He is just lazy.

17. They never had anything like that in my day you know.

18. He’ll grow out of it.

19. Have you not thought to use essential oils?

20. They just need a good skelp!

21. Once he starts talking you will never know he has autism.

22. Disability is just an excuse for poor parenting.

23. Your child has that because you neglected them.

24. It is learned behaviour because their brother has it. They are just copying you know.

25. He just has too much screen time. Take his iPad away and he will be fine!

26. All kids do that.

27. It’s just because you have anxiety. That makes a child disabled.

28. She isn’t talking because you are deaf so you can’t teach her!

30. He’s fine in school you know!

31. Fillings. If you have fillings in your teeth it makes your child disabled.

32. Peppy Pig is what makes your child autistic.

33. You need to feed them the right stuff. Organic, gluten free, sugar free, wheat free…

34. It was probably for the best you had a miscarriage as you would not want another child like your son would you?

35. Cool they have autism! What’s their special gift?

36. He’s always fine with me you know!

37. It’s because you and your husband separated.

38. There’s no chance he has autism because he gives good eye contact.

39. There’s no chance you have autism…you have a job!

40. Are you sure they actually got diagnosed with that?

41. You just sent her to the wrong nursery!

42. Vaccines. I got my child immunised and made them disabled.

43. They just need more fresh air.

44. Dirt. Apparently, my house is too clean and that has caused my son’s autism!

45. Have another child. If he has someone to play with he will be fine.

46. She can’t have autism, she’s a girl!

47. She is way too social to have autism you know!

48. You do way too much for him. Doing that makes them disabled.

49. You just want people to feel sorry for you because you have a disabled child.

50. Mixed race marriages. It isn’t right and that is why your child has problems!

Some of these are laughable, but some actually made me cry.

None of the above were actually  said as a joke nor were the devised as deliberate hoaxes for a day like April Fools. In many ways it would be so much easier for families if they were!

Instead every single day of the year we face remarks from others that are hurtful, inconsiderate and offensive.

Special needs families do very much have a sense of humour…we need it more than others to cope.

But we also need respect, support and understanding and none of the comments above offer this in any way.

Please read the statements again and make sure you are not an April Fool this year by saying any of them.

We sure don’t need to hear anything like that today or any day.

Think, care and learn. Don’t be a fool to families with children with additional needs.

Thank you!

The Future of Us

Once as my son and I were pushing his sister in her wheelchair down the aisles, a kind lady approached us.

I will never forget that unexpected meeting.

She told me that she was a mom, just like me, and proceeded to show me photos of her beautiful son in his wheelchair.

When our chance meeting ended, we hugged and she told me how we were, in a sense, sisters.  That ultimately led to my frantic search for tissues in my diaper bag, to dry my overflowing eyes.

Recently, another unforeseen moment of impact hit me as I shopped.

There was an elderly couple with what I assumed to be their middle aged daughter.  The three of them walked slowly together; the parents lovingly helping their adult child maneuver through the store.

She had the brightest smile and it was completely obvious that the three of them mutually adored each other.  I am not certain that she was nonverbal, but that was my impression.

My daughter is nonverbal, and I could just sense some similarities between them, on some strong parental wavelength, perhaps.

I couldn’t help but stare at them…I wasn’t gawking at them by any means, I was watching them in admiration.  I was gazing at them and feeling a sense of familiarity.

I could see a glimpse of my own disabled daughter, many years down the road.

I also saw a glimpse of myself and my husband in the elderly couple.  They were holding on to her so tightly and helping her to walk. They did not waiver and they kept a slow and steady pace.

I went on about my business and finished up my shopping.  While in the check-out line, I saw the mother walking the daughter to the restroom and helping her make her way inside.

I felt that familiar lump in the throat start to form, and the hot sting of tears starting to burn my eyes.

I could see myself doing this in thirty years…..and I knew I would do so with pride.

I thought about them all the way home.  And I still think of them often.

My daughter will need me and her Daddy always and forever.  That scares me beyond words, as I know the day will someday arrive when we have to leave her on this Earth without us.

It’s a thought that I push way back in my mind and can’t allow myself to focus on for long.

She will have her brother, and that brings some comfort.  But, she will always need US.

Putting myself in the shoes of the mother at the grocery store, I know that she probably feels those same, real fears.

As a mother of a daughter with multiple, profound disabilities, I will gladly care for her, carry her and protect her as long as my own body holds out.  Her Daddy and I both will.

It will be an honor and a privilege, because of the immeasurable love that we have for her.

Reaching New Heights

We started small and without much motivation, managing to make it up to his knees before giving in.

Then we graduated to a full upright standing position that he pulled into from the ground to the coffee table.

Funny enough, the same motivation that sparked his interest to crawl was the same to get him to stand. Candy. (Whatever works, right?)

The thing about my son is most of his strength used for standing, comes from his arms.

That is where he puts most of his weight and definitely is what he uses to pull up since he is paralyzed from the knees down. This is where it gets scary for momma.

He has taken a few slips of the hands or feet and tumbled chin first into the table, or if we got somewhat lucky he just landed softly onto his playmats.

It’s also pretty worrisome now that I have to worry about what is in reach of his little hands. He has never got into anything he wasn’t suppose to, but I know it can and probably will happen one day.

Despite the frightening possibilities that can come from him standing, I have embraced it with open arms.

After all, it was something the doctors’ said he would never be able to do.

It kind of makes you want to send a lovely little video to them and say, “in your face!” (;

Now that we have achieved this awesome step towards walking, we are able to use our Upsee without a hassle.

When we received the Upsee earlier this year, Oliver showed no interest in standing and wasn’t gaining much from being in the contraption.

I can tell such a difference now, from him bearing more of his own weight all the way to initiating his own steps.

With the awesome help from one of Firefly’s therapists, we were even presented with activities that could improve Oliver’s experience and weight bearing in the Upsee.

Such activities included helping mommy put dishes away, having him color on a table, or even going with me outside to get the mail.

What a gift it is now, to hear my little man saying he wants to go outside and walk with his mommy.

When we received Oliver’s diagnosis, as I mentioned above, the doctor’s shared what we might expect and not expect.

Anything physical was not high on the possible list. Sadly, it was all we knew to believe from these medical professionals so we did not expect it.

Although delayed substantially compared to any other child his age, our son did end up hitting these milestones.

Oliver learned how to sit on his own at one year. He learned how to crawl by the time he was 1 1/2 years old.

We are here now, almost three, and are pulling to stand!

We still don’t live to expect anything from our boy, whatever he gives us we will love, but with the awesome therapy and devices out there we are constantly surprised with what he is able to do!

This little boy of mine is reaching new heights with help from all over.

Epilepsy – Seize The Moment

I’m sure I don’t need to tell anybody that though.

My son was diagnosed with epilepsy in October 2015 after a two-and-a-half hour – (yes, 150 minutes!) – seizure landed him in PICU, intubated and ventilated – unable to breath for himself.

He had experienced seizures before this when he was on the cooling mattress in NICU, over 9 hours on his worst days.

Then as he grew older, they became very few and far apart, until that awful day in October 2015, when I thought I’d lost my baby – just 17 days before his 3rd birthday.

Watching his tiny body uncontrollably shake whilst over 12 doctors, nurses and anaesthetists ran around him, sticking needles everywhere to try and find a vein that hadn’t already been overused.

Then using what I can only describe as a DIY drill to gain intraosseous access into his shins, just to give his body the fluids needed to keep up the fight.

Intravenous access was no longer an option so they injected directly in the marrow of the bone to gain an entry point that wasn’t collapsible to provide fluid and medication.

After what felt like a lifetime, the decision was made for him to be anaesthetised and sent to the nearest children’s hospital with a paediatric intensive care unit which was over 50 miles away.

He was sent in an intensive care ambulance as a time critical call.

That journey was the longest journey of my life.

Sat in the front of the ambulance, as there was no room in the back, blue lights flashing and sirens wailing, I felt like I was stuck in a time warp – not moving anywhere.

It was that moment, that very moment when I looked over my shoulder, through the little window into the back, the anaesthetist looked back and smiled – they’d finally gotten a response (albeit the smaller respiratory effort, but, it was a response).

It was then that I saw the first glimmer of hope, my boy was fighting.

Fast forward a week on PICU and a further month in hospital, my boy was home and on medication to help prevent seizures.

Ever since my son was born I’ve appreciated every-single-moment, but since his epilepsy diagnosis and the realisation he could be taken from me at any time – I’ve learnt to ‘seize’ every moment.

Take pictures, smile, laugh, do silly things, cuddle as much as you can, love as hard as you can.

Because it could all be taken away, just-like-that.

Since being on medications, we’ve ‘only’ seen between one and three seizures a month.

Each one displaying similar traits.

It never gets any easier though.

Each minute seems longer.

Each time his lips go blue from the inadequate breaths he takes whilst seizing.

Counting down the minutes until I can administer his buccal modazolam, in the hopes it will stop the seizure in its tracks.

After every seizure you can’t help but wonder what damage it could have done to his tiny body.

After his big seizure in October 2015 he was blind for over 3 weeks.

Thankfully, his recent seizures have been under 10 minutes and he’s slept them off after having his rescue medications.

We’ve also been dealing with a lot of neurological irritability recently.

Our epilepsy nurse has also mentioned ‘auras’, an aura can be anything from a funny taste in the mouth to seeing flashing lights or a really, really bad head ache.

Now, my son cannot communicate his needs, so his only way of notifying me of his unusual feelings is to cry.

Not his normal cry.

A high pitched almost shriek like noise.

Life with a special needs child is hard, a special needs child with epilepsy makes it even harder.

Going out is hard, enjoying outings can be even harder.

But if you can…

Get out and, ‘seize’, the moment.

Make memories.




Mother’s Day

I longed to be a mum, mothering Sundays use to be bittersweet, celebrating with the women in my life and thinking that this is not something I would be able to celebrate on the receiving end.

My wish did come true though and in the year 2008 that I got married I also became a mother, it was magical and all my dreams came true.

My mothering journey was not to be straightforward though or mainstream.

You see I was blessed with a son who had extra needs, these were not visible needs or easily identifiable – they were issues that took alot of investigative action from the professionals and early intervention strategies.

Early learning plans, speech and language therapy, communication assistance; on top of that my son was severely short sighted with a rare eye condition and this was a whole barrage of additional checkups and pulling and prodding.

So I received the card and the flowers and the chocolate from my husband in the early years, but mother’s day was just another day in our hectic lives.

We had a son who was not able to go to restaurants or day trips to busy places as these caused sensory issues and ended in a breakdown from Cameron and tears from a fraught mum.

The worst part though, was the fact that one of the biggest hurdles my son would endure would be learning emotions.

I was told that most autistic children are “not very loving”, that they struggle with emotions and their comprehension of these.

This was really hard to digest, especially on the tough days, when you just want to hold your child and have that connection and bask in their love and warmth.

My son never sat still and wasn’t one for touch.

But this was the early days into our autism journey, Cameron was just a little delayed in his blossoming.

The first year of him understanding mother’s day was magical when he brought me the handmade card from school at the age of 6 – even if it did say To Mum & Dad.

Cameron is 8 now and on reflection this mother’s day I know that I don’t need cards or flowers or chocolates…… ok maybe the chocolates.

You see my son now tells me at least 2/3 times a day how much he loves me – EVERY day, without fail.

“I love you mum ya know”

“You are the best mum that I’ve ever had”

He will come to me for a cuddle; he will sit with me and watch a film, even if it is one he chose and we have watched a thousand times already.

You see I know now that I am a lucky mum, yes my child has weaknesses and daily struggles but we CAN communicate, but he is healthy and we have our own way.

He loves and is thoughtful and empathetic – I know people who have nothing wrong with them and don’t have empathy like my child does.

So this mother’s day my thoughts are with the special educational needs families that do not have the ability to communicate with their children.

That long to hear their child speak and hold their gaze to be able to connect.

Mothers that can’t have a day of rest, as their child needs 24 hour support.

The single mothers that pull double shifts with their children and don’t have anyone to share the daily woes.

I salute you all – you are the true heroes and people worthy of mother’s day thanks and appreciation.

Don’t Be Scared

Please do not view my son for everything his disability claims him to be.

For he is everything but. He is fierce in anything he sets his mind to.

Although it may take him some time, he finds a way to do it.

It may look different than how your child does it, but trust that it will get done.

He is intelligent. At just two years old, he is able to hold conversations with kids and adults of all ages.

His frame may be thin but after a few minutes he still gets as tiring to hold as any other toddler!

I see the stares and conversations under their breathes at the playground, stores or restaurants.

I hear the mothers’ warning their children to be extra careful around my boy.

Making the exception when he takes their toy, scolding them to let him play as he pleases.

I will let you know that despite his diagnosis, he has still learned how to share toys and play appropriately. I scold him when he takes toys away, not sharing as he should.

He still has things to do at home, like cleaning up after himself when he has taken every toy out of his toy box.

If he spills, I kindly hand him a napkin and I teach him how to clean the spill up.

My open letter is to simply ask that you do not view nor treat my son any different than you would your own child.

He is capable of mischievous things just the same as any other child, and my goal is to raise him the same as my other children.

Because of this, he has never viewed his disability as something that sets him apart from his siblings or any other children.

Although young, he does not even seem aware that he has a disability. Growing up, it is all he has ever known.

So I ask that you do not view him as fragile, small, incapable, or even angelic.

I do love to brag that he is one awesome kid (who is pretty good at following the rules), but I do know that he loves getting into things he shouldn’t.

Curious little minds can lead to all kinds of discoveries. Just the same as curious minds can lead us down the road of new awareness to things such as his diagnosis.

Instead of shying away from him because he wears braces on his legs or uses a wheelchair for getting around, encourage your little ones or even yourself to come over and inquire about what you are curious about!

If things don’t seem like such a taboo and we learn about them, they might not seem so foreign to our children.

We are the biggest teachers of our children’s life!