Raising kids With Special Needs: Helicopter Parent Equals Autism Parent

I think the above blurb taken from Google is an insult quite frankly; I take a defensive stance to this.

Some other descriptions from across the net:

• Highly-strung, control freak parents

• Restrictive, patronising, nannyish

• Obsessively protective mums and dads

Here is my definition of a helicopter parent, which one do you gravitate more towards?

Noun, informal “A parent who is vigilant and or is conscientious and or protective of their child or children” You see I don’t want to be this way, I’m not neurotic, I’m working on it and I apologise if I appear to be mollycoddling my son but there are reasons for this.

I am a helicopter parent because…

• At any given moment even though he’s sat enjoying those crisps you gave him; if a south easterly wind was to pass and blow his perfectly placed tuff of hair in a way that feels out of the ordinary he will lose it.

• Although you think he’s being greatly affectionate and interested in your newborn; my throat is in my mouth and in the split second that he loses interest and feels like dropping your bundle of joy – like NOW onto the floor, you will be glad I’m there.

• What a great wedding. It’s lovely that your daughter is playing nicely with the other girls on the dance floor; but I am watching their body language trying not to engage him in “Ring a Roses” that my son is clearly not picking up on and I just read his lips say “I’m going to tell my mum”.

I am a parent who is there to protect, reassure, and prevent harm (physical or emotional).

I do this as millions of women before me and millions after me will do for their own. I don’t do it to turn my child into a spoilt brat as some may see.

I do it to guide his competence and confidence. Every opportunity where I will intervene like the examples listed above, I turn into a learning experience for my son who struggles to understand situations in the way typical children do.

I understand that help is not always helpful but there is a time, place, and environment to let them try these things out on their own or to push their boundaries.

It’s more often than not within familiar surroundings like at home or school, where the fallout can be contained.

• I will encourage him to try new foods/textures even though they may make him gag.

• I will encourage him to try and resolve his issue with his friends at school by himself.

• I will tell him that he can’t always have his own way and to wait his turn. • I will discipline him accordingly when he has misbehaved.

So you may see me a bit on edge in new and social situations. I’m not ignoring you, I would love to enjoy the Latte going cold on the table and above all I truly envy that you can leave your child to their own devices but…

My child is autistic, I am a helicopter parent because…I love!

Raising Kids With Special Needs: More Than A Meltdown

And I say, “suffering with meltdowns”,  because after spending nearly 18 years helping my daughter through her own challenges with aggressive behavior, I have truly come to believe that when she is melting down she is suffering.

Meltdowns are not the temper tantrums of spoiled brats who haven’t gotten their own way.

And what may seem like a perfectly bearable situation to the average Joe Schmoe may be a completely intolerable and overwhelming situation to a person with autism or other special need.

My husband and I have been accused by others a few times of, “letting our spoiled special needs brat get away with murder.”

Let me tell you, when we hear those words, it hurts and it’s heartbreaking.

After witnessing my daughter have a meltdown, people who don’t know my her very well or even at all, often assume that she does nothing but meltdown 24 hours a day 7 days a week.

They sum up and label her as a “special needs brat” based only on seeing her at her worst, most vulnerable moments when she is going through a traumatic experience, enduring an unbearable sensory overload or she has otherwise somehow been pushed beyond her limits.

To those people I say this, ‘Do not judge my daughter’s entire life story based on what you’ve witnessed in just a few minutes or hours out of her entire lifetime!’

Please do not judge my daughter’s behavior or label her a special needs brat if you have not spent a significant amount of quality time with her, truly getting to know her and what makes her tick!

You may have seen my daughter melting down a time or two, but what you have never seen is the sweet, loving, funny, cute, caring, adorable, hard working, determined, smart, brave, courageous, incredible, and amazing young woman that she really is.

You have never witnessed how hard she has worked to rebuild her life and overcome and conquer the after effects of having had a life threatening brain tumor, a massive stroke, cerebral hemorrhage, traumatic brain injury and a debilitating seizure disorder.

You have never seen how unflinchingly determined my daughter has been while struggling to break through the barriers in her way to successfully create quite the happy, active, and satisfying life for herself!

So please, until you’ve spent enough time with my special needs daughter to see that she is so much more than a meltdown, and you’ve educated yourself about her particular conditions and disabilities, kindly refrain from making snap judgments about her and accusing her of being a special needs brat.

The video shows how awesome Bethany is and that she is more than just the sum of her meltdowns!

Special Needs Parenting: The Truth Hurts

Every nappy change, wake up, seizure and activity detailed in nauseating detail.

And it really, really HURTS. Why?


Because it forces me to record all the events that make our lives so different to what we had expected.

It means I have no choice but to acknowledge just how many of the vile seizures my little man suffers on a daily basis.

And that really hurts my heart. It breaks me, if I’m honest.

He is such a lovely, happy little boy but when you have to examine every smile and every laugh to ask whether its joy or seizure activity…. lets just say it sucks the very life out of you.

It’s a truly hideous experience, however it is a necessary evil, a means to an end.

It will hopefully drive it home to the people who make the decisions over whether or not we get the care and support we so desperately need that we do, DESPERATELY, need it.

The agreement is there in principle, however now we have to show just what life is like on a daily basis, and if I’m honest a lot of the time while we don’t ignore Sams seizures or how much we have to do, there is a certain level of acceptance that this is just how life is.

Its no better or worse than anyone else’s. It’s just different.

For me, the seizures just fade into the background of our lives.

One upon a time they had a terrible power over me; they would leave me terrified to let my child out of my sight, too afraid to fall asleep in case one hit in the night and I missed it, and the fear of one hitting while we were out and about meant that I was in danger of becoming a prisoner in my own home along with my precious boy.

Over the past 4 years we have learnt that life is for living, and that while SUDEP (sudden unexplained death in epilepsy patients) is a very real and very frightening thing indeed, it is also not a common occurrence.

That doesn’t help if it happens to be you it happens to – just like with Sam’s condition statistics means bog all when you’re the 1 in x many 1000 affected.

Our defense is to live and to cram as much joy into every day that we can; and to ensure that Sam is treated like any other 4 yr old little boy as much as possible.

We try not to wrap him in cotton wool, for example, sending him off to school in a taxi with an escort.

But today, having to note down each and every twitch, every seizure, and so on…. today there is a small chink in my armour and I’m feeling very vulnerable.

There is but one attempt at a cure for this situation and I intend to make use of it.

I am off to bed, to cuddle my favourite little man in our bed while his Dad, bless him, sorts out the laundry and makes sure all our animals are fed, safe and in their respective beds.

Three days of the diary done, only two more to go.

Raising Kids with Special Needs: Sometimes I Just Want To Be Mom

Certain days, it would be nice to sit with my coffee and snuggle with my kids WITHOUT feeling the twinge of guilt that I always feel.

There is just so much to be done, and my mind won’t allow me to wind down.

There may be a great movie on television that our family could be watching together and taking time out for, together.

Instead, all the while, I am thinking of the numerous therapy methods I should be facilitating for my daughter.

Sometimes, I just want to cuddle and relax with her;

sometimes I just want to be Mom.

Today I don’t particularly feel like spending twenty minutes wrestling my headstrong daughter into her orthotic therapy suit, knee-ankle-foot orthotics, and making her walk in her gait trainer.

This is an integral part of our routine, but today, I honestly wish we could just skip it.

I know in my heart of hearts how therapeutic it is for her.

I know that every minute spent in her orthotics, in an upright position, is beneficial for development.

It is essential to work on her coordination, core strength, muscle development and digestion.

I also remind myself that she needs time in her standing frame later on in the day.

We must work on hand-eye coordination, so I really should get up and charge her iPad.

Installing some new cause and effect apps on it also must be done.

Before lunch time, I need to employ her Nuk brush and work on motor sensory therapy.

Her cheeks and tongue need a good massage so that we can strengthen the muscles in her mouth, and hopefully someday, she’ll learn to chew.

Everyone is comfortable and in a state of repose on the sofa; my brain is telling me to get up and get to work!

I want to ignore it and continue resting and cuddling.

I don’t want to be her therapist today.  

Today, I just want to shower my beautiful, amazing child with affection.

Today, I just want to be her Mom.

Today, I think I will do just that.

Will it come easy? No.

Will the guilt get to me? Most definitely.

But, as hard as it is to relax when I know how important these things are, she deserves to just be a kid sometimes.  She deserves to just hang out and laugh with her brother.

She shouldn’t have to work perpetually.

Although all these activities on our checklist are aiding in her progress, I remind myself:

One day of rest will not make or break us.

It will not be detrimental if we leave a few boxes unchecked today.

Someday, I will be able to take a day “off” with my husband and my kids without feeling like an inadequate mom.

I will sit and enjoy our family time together and just be Mom.

Allowing myself to give kisses and cuddles and letting go of my worries for a while.

Raising Kids with Special Needs: Multiplex Families – It’s in the Genes

I’m going back briefly to put myself into my mother’s shoes; you see, I’m a second generation autism mum and a very new family addition to this world is my sister Christina and my nephew Alex.

Autism, unless severe, was not diagnosed back then.

I have a brother; Brian whom is an undiagnosed autistic person and now 30 years old, I don’t need to be a medical professional to know this.

I know this because my son Cameron and Alex who are both diagnosed share every trait of his.

Back to the 80’s…

Mum received yet another call from school to say Brian is acting up; “Brian is not concentrating,” “Brian has wondering off – AGAIN!”and, “Brian is now suspended!!!”

She would ask him a thousand times why he had done something; he never knew and would do it again as soon as her back was turned.

The tears she cried.

A Doctor once told mum that there were thousands of children like Brian who fall through the net and are let down by the powers that be.

By the time there were mentions of autism and complex diagnosis, Brian was in high school.

It was too late for him; he left school with no grades having had no support.

The reputation he had obtained throughout his school life was of being naughty, instead of an ASD label he so deserved.

He now has a family and found his own way but things could have been much easier for him.

Genetics… At present, no specific genes linked to ASD have been identified and there are currently no tests that can screen for, ‘ASD genes’.

However, the specialist seeing your child may screen them for genetic conditions that have similar features to ASD, depending on any additional symptoms your child has or are present within your family history.

There are some families where only one member has a diagnosis of ASD, and no one in the extended family has a diagnosis.

Such, ‘one-off’, incidences of autism are referred to as, ‘simplex’, autism.

On the other hand, there is a multitude of families (like my own), where more than one member of the extended family has a diagnosis, or several members have very high levels of autistic traits – even though they might have never received a formal clinical diagnosis.

Such families are referred to as ‘multiplex’ families.

Experts estimate that between 400-1000 individual genes may play a role in the complex neurological issues involving autism.

I have read that if you have one child with autism then the risk of your next child having this also is only 2-6%, if autism was down to a single gene then this figure would be more 25 or 50%.

Present day; back in my shoes, a multiplex family.

So in the 80’s there was no diagnosis for Brian…2012 a thorough but lengthy diagnosis for Cameron…. and 2015 a quick diagnosis for my nephew Alex where we noticed on multiple occasions within the reports, “maternal cousin confirmed ASD & uncle ASD traits!”

It’s easier in some ways for us; it goes much more beyond statements of, “Ohhh he’s just like his uncle/cousin,” or, “He does that just like his uncle/cousin.”

For us the similarities are comforting, it’s reassuring if we have seen the trait before because we then can gauge if it’s a phase and if it was outgrown.

It’s the unique traits that are new or unknown that make us more nervous or take to the Internet for reassurance.

Christina and Alex were my inspiration to want to blog about autism.

I struggled during the early diagnosis days when battling to explain how Cameron was similar to my brother with autistic traits, who didn’t have a diagnosis.

I wanted to share my experiences for my sister as well as others to have a reference, to be able to relate.

For Christina the professionals were keener to listen to her as soon as she mentioned her nephew was autistic. For her I think it helps that I am a few steps ahead in my journey, for reference.

So as they say “It’s all in the genes”; be proud of your genes but use the information you have and what you know about your loved ones to your advantage when seeking a diagnosis or additional support.

10 Tips to Encourage Independent Walking

Each child achieves these skills at their own time, in their own way.

Though we learn motor development from textbooks putting forward neurodevelopment theory to explain skill acquisition and motor patterning.

The actual progression of gross motor skills takes on distinct characteristics when we look at each child as a unique creation.

Among the first reassurances I can give families is that motor milestones exist on a continuum.

There are differences in personality, some children are always seeking, searching for new sensory experiences, investigating each new noise, new scent, new image.

Other children are happy to be more sedentary, allowing the objects and people in their life to come to them, engage with them on their level.

Sometimes we, as parents and caregivers, need to encourage a bit more exploration to facilitate not only motor development, but language acquisition as well.

And now for some helpful tips to encourage independent walking, modeled by my son Abe.

Tip#1: Encourage barefoot exploration as much as possible.

Allowing the child to experience different tactile surfaces along the sole of their feet allows for use of the intrinsic muscles, which lead to eventual development of arch support.

Barefoot standing and navigation also promotes more natural weight shifting and weight bearing which helps child build both static and dynamic balance necessary for independent walking.

So, take off your shoes and socks and join in the barefoot walking on grass, sand, padded mats, solid floors…the possibilities are endless!

Tip#2:  Move everything from the floor to different surfaces around the playspace.

Choose different heights, different placements throughout the day, determine the objects that are the most motivating for your child and make those objects the more challenging to reach for.

As you can see Abe has been really motivated by the shape sorter, in particular the star shape so that is placed at the most elevated level these days!

To reach certain objects Abe gets up on his toes, then squats down low to reach others.

As he brings certain items to me, either a book to read together or the colorful coins to help him put in his piggy bank, he will be encouraged to let go of his upper body support, rotate his body, stand independently, and ideally take a short step or two.

Tip#3: Encourage reaching overhead and down below for objects, bubbles, balloons, putting ball in hoop.

This will promote less reliance on upper body external support as the child reaches away from base of support, activating balance reactions, trunk strength and weight bearing through stable lower extremities.

Tip#4: Encourage bi-manual work.

Again we are taking the focus away from that external support your child has been relying on.  Offer an object, which requires your child to use both hands to manipulate and carry along.

Promoting standing and walking while child is holding object with bi-manual grip using both hands will discourage reaching for support and encourage more activation of trunk and lower extremity muscles.

O-Ball offers some great options, two musical toys (one for each hand!), a large stuffed animal, anything motivating that requires both hands to be engaged and active so that the child’s trunk and lower body are called upon to maintain balance and stable support.

As you can see in the above photo, Abe is holding one egg shaker in his right hand, reaches across midline to grab the other musical toy with his left hand and with both hands occupied, he stands independently!

Tip#5: Encourage transitions.

Many of our little ones are pulling to stand using upper body more than lower body to attain this position.  We can encourage other means to rise to standing, for instance:

Sit to stand transitions from low bench, cube chair or foam roller, promoting knees over toes pushing up into standing (vs using upper body to pull up to stand).

Click to see video of Abe’s sit to stand.

Tip#6: Introduce idea of, “dynamic support”.

Pushing weighted shopping cart, toy car, swing in park, large therapy ball all help to encourage weight bearing and moving through space with “dynamic support”.

Promoting weight bearing through legs, weight shifting, and less reliance on stable support as the child has to begin to anticipate the movement and adjust their body accordingly.

Tip #7: Encourage climbing.

Ramps, stairs, or a slide can help to promote trunk and lower body dissociation and strengthening.

Tip #8: Change up the environment.

Bring child to different settings: outdoor playground, indoor gym, friend or family’s home.

Different settings bring different experiences, new challenges and new incentives to interact physically with surroundings!

A great way to generalize skills and prevent any degree of complacency.

Tip#9: Enjoy every moment.

Despite being sleep deprived, hungry, and stressed….try to enjoy these moments with your little one.

Each skill acquired no matter how big or small is a great accomplishment that should be relished and applauded for you and your child!

Tip #10: Ask for help.

If all else fails, ask for help.  As Pediatric physiotherapists we are able to offer other suggestions, activity ideas, and help to assess any underlying reasons for the developmental concerns you may have.

No judgements, just helpful suggestions await if you reach out to the right professional!

For more information you can email Dr Rebecca Talmud, Pediatric Physical Therapist and owner of Dinosaur Physical Therapy directly at [email protected]

Raising Kids with Special Needs: Life Isn’t Always a Walk in the Park

My little girl has given me the power to be an optimist.

Most days I’m able to tackle the challenging and hectic schedule that is our life and find many beautiful moments woven in.

With her happy smile, she helps me see past all things difficult and reminds me how much there is to be thankful for.

However, there is an unescapable sadness that still manages to creep up on me from time to time, when I least expect it.

The sadness and grief are cyclical; periodically recurring, no matter how positive our current situation may be.

Things may be going perfectly fine and life can be magnificent, until one little catalyst can turn a good day upside down.

At a recent visit to a local park with my family, my son played cheerfully while I sat my daughter in the sand to feel the texture.

As this didn’t suit her, she tried out the accessible swing and then the slide, with my help.

None of these activities met her standards of a good time!

Sitting her back in her wheelchair, she was finally contented.

She was back in her comfort zone.

Then, out of nowhere, a pang of grief snuck up on me with one simple question from a little girl.

“Can she get out of that chair and come play with me?”

And there it was.

The familiar lump that quickly forms in my throat when I want to cry, but I desperately try to choke it back.

Like a brick to the forehead, the sadness hit me, and it hit me hard.

A simple response of, “I’m sorry; she can’t,” was all I was able to manage.

Her mother was beside me and quickly told her to run along and play.

The day was bright, and there were kids laughing, running and digging in the sand.

There were squeals of cheer all around us as kids were playing and enjoying the freedom of being at the park.

All but my daughter.

She was only a spectator, merely observing the sights and sounds around her.

A sweet child wanting to incorporate her in the fun normally would have delighted me; someone wanting to include her.

This particular day at the park, it didn’t.

I felt the opposite of delighted…I felt completely dismayed.

While I truly appreciated her wanting to involve my daughter in play, all I could do was feel the heavy inequity – the unfairness of the situation.

The fact that she can’t get out of her chair and join in hurt me to my core.

She deserves to be able to run and jump and climb the steps to the slide.

She deserves to be part of those precious childhood moments other children get to experience.

Instead of enjoying this sunny afternoon at the park, instead of happily watching my son on the monkey bars having the time of his life, all I wanted to do was dig myself a giant hole in the sand.

Moments like this will always be a part of our life.

I am certain that they will come and that they will pass.

As waves crashing onto a seashore, the sadness will roll in from time to time.

There is no way around it.

On a positive note, the waves recede a lot faster now than they did in our journey’s beginning.

The sneaky sadness that found me on that day at the park diminished as we left to go have ice cream.

She loves ice cream and I love seeing the joy on her face that it brings her.

In beautiful moments like that, I again find gratitude.

I appreciate this beautiful daughter of mine and all the wonderful things she is.

SHE is reason enough to dig myself back out of the sand.

Surviving Chronic Stress As A Special Needs Parent

When your child has very complex needs and you must spend your days contending with, “the system”, it is pretty much inevitable that, at some point, you will reach either carer burnout or chronic stress.

Depression, anxiety and mental health issues in general seem to be finally getting the serious attention they deserve and I think it is absolutely crucial that we all talk about these issues and take care of each other.

Chronic stress is defined as the response to emotional pressure suffered for a prolonged period over which an individual perceives he or she has no control.

Those of you who have followed my blogs will know very well that I am at peace with Amy’s diagnosis.

This causes me very little stress. If she is happy; I am happy.

But is she happy? No. Facebook is a very unrealistic portrayal of how things really are.

The pictures are all smiles and cuteness but the reality is… you didn’t see the five minutes before or after that picture. Things are bad right now.

For us at the moment the challenge is chronic, unexplainable crying.

For over a year now I have been advised time and time again that Amy is suffering the wrath of GERD/severe reflux.

It’s true… the reflux demon does dwell within and we medicate her for this.

However, I have been adamant for a long time now that there is also another issue that needs addressing.

Be it neurological, be it neuropathic pain, be it visceral pain.

Who knows?

Certainly not I, nor any of the professionals involved in Amy’s care.

Currently it seems we are dedicating our time to distracting Amy from her crying… we are not actually making her happy.

We are diffusing a situation rather than enjoying ourselves. It is hindering her development massively that we don’t know how to help her.

Inevitably when stressed I turn to the Internet. I search for mindfulness, coping mechanisms and so on.

The Internet is so quick to tell you to cut out that thing that is making you stressed.

It tells you to eat healthily, exercise more, take more time for yourself. How on earth are we meant to fit any of that in?!

My stress recently has got to the point of my anxiety medication being doubled and me eating horrendously. My brain is screaming out for carbs and sugar – quick fixes to my lack of energy.

The result is an expanding waistline which then makes me lethargic, self conscious, and even more sad.

Until we get answers about why Amy cries how she does and why she isn’t sleeping there is no way at all I can recover. The knock on effect of this is of course that I will have no patience or energy to be the mum Amy deserves and needs me to be.

This then sends me into a guilt spiral and thinking I am not doing enough.

It is suffocating. Truly suffocating.

Our, “urgent”, housing situation has me awake a lot in the night, as do feeding issues, appointments, all sorts.

On top of this I have non-Amy related issues worrying me.

Sadly this year I have suffered two miscarriages, one of which was particularly traumatic.

Nothing can prepare you for that level of grief. To take that on in addition to everything else is soul destroying, but in the long run I know I will become more resilient and learn that some things are just not meant to be.

Someone at my work joked about my working one day a week and said, “Enjoy your six days off!”


Come and live a week in our life!

One week is physio, opportunity groups, chasing return calls, special needs events, countless phone calls and paperwork, non stop research, forever drawing up meds and changing tube feeds, pediatric visits, speech and language exercises, standing frame time, collecting and ordering prescriptions, and so much more.

I can’t quite put into words just how much of our time is taken up due to “extra needs” related things.

Things like the GP taking things off our prescription list without explanation and then the amount of calls it takes to rectify it.

Just silly things like that can take a good few hours.

A day at work is peace for me.

It is a chair, it is a hot drink, it is a pleasure.

We recently went on a long trip to a city hospital to meet with a gastroenterologist. The journey itself was the definition of stressful.

We foolishly decided to get the train there. We did not phone in advance to enquire about wheelchair access. So the trip involved an out of order lift and carrying a very heavy wheelchair up two huge flights of steps.

It involved asking people to move to a different carriage so we could fit on the train. It involved parking the wheelchair outside the toilets because people saw fit to store their luggage in the designated wheelchair bay.

If that wasn’t enough we then embarked up on a two mile uphill walk in the rain to the hospital. Amy absolutely screamed and wailed inconsolably for the entire journey.

We eventually got lost and I broke down. I broke down horribly. I cried, I wheezed, I got strong heart palpitations, I felt weak, I felt fizzy, I felt I could pass out.

But we plodded on, determined to get some answers.

I arrived in the hospital looking like a wet, boofy haired, overweight Alice Cooper.

The consultant by the way was of course stunning, just to further emphasise just what a trollop I looked!

She took one look at Amy and said, “What I am seeing right now, it’s not reflux.”

She continued; “No child can be on that amount of medication, on this type of feed, not vomit.. and have this be called reflux.” I felt a huge surge of emotions.

This beautiful lady was confirming exactly what I had been harping on and on about for over a year. I was frustrated, relieved, smug, just everything. When we left the hospital I held Amy tight and I cried “I am so sorry. I don’t know why things are like this but I promise it will get better.”

So there we go. I now must get the paediatrician on board, see a neurologist, get three tests ordered at our local city hospital to confirm it is definitely not reflux.

If it’s not reflux, then what is it?

If it is reflux, Hello, major surgery.

You see, Amy is on 24 hour pump feeds at the moment and has a failed fundo.

I am reluctant to get a redo as children with severe neurological impairments are at a higher risk of it failing again.

I don’t want to put her through that – it was a hard enough decision the first time round!

Last week I collected Amy from respite. On the drive there, I could feel myself getting more and more upset.

I had spent the whole time feverishly trying to complete necessary tasks – I had no down time whatsoever.

I felt angry and upset. I calmed myself down.

“Breathe”, I keep telling myself, “It’s okay.” I got through the doors at respite and they told me how Amy had been impossible to settle the whole time.

They said they didn’t know how I was coping.

I said I wasn’t.

I broke down.

I felt so stupid.

I hate crying in front of people.

I am sure they are used to it and they were very understanding.

But the truth is – what we are doing can be really hard.

No one wants to see their child constantly distressed and not know why.

No one wants to operate on permanent burnout.

So my tips to cope? That’s a hard one. I am not sure I am the most qualified person on telling you how to cope.

I cope with coffee. Not great I know. Lots of coffee. Copious volumes. What else.

Accepting help, talking about your issues, searching for solutions at every given chance.

I used to keep my anxiety a secret – I didn’t want people to think I was attention seeking or that I was weak.

But you know what?

Sometimes your brain simply cannot make the chemicals needed to cope with a situation and we need a little extra help.

There are people out there going through so much less than us that are suffering mental health issues, it’s a very real thing.

Life is stressful.

Every now and then, I will do a big exhale and take stock of what I have got.

I have an amazing partner, daughter, dog, family and friends.

We have love, warmth, shelter, and most importantly – hope.

This journey makes you strong, it makes you more patient, it teaches you so much.

You learn not to judge, you learn empathy and compassion.

By talking about what I have been through/am going through such as miscarriages, wheelchair issues, housing problems, chronic irritability, anxiety and so on, you soon realise you are not alone.

There is great comfort in that.

Stay strong everyone.

Don’t keep it bottled up.

Keep fighting.

Love each other.

Take care.

You will get where you need to be. Sometimes it is one step forwards two steps back, but just keep going.

When People Say Our Son With Cerebral Palsy, ‘Will Be Just Fine….’

I was balancing hope and reality equally.

Those around me, meant well and their intentions were likely to find verbal consolation to our son’s tragic birth injury, but I kept hearing time and time again, he’ll be just fine.

Stories poured in – miracle stories in fact.

Babies that had similar birth complications like our son had who went on to lead normal lives and find full recovery.

Everyone telling us that our son would be just fine.

But he wasn’t okay or fine… and wouldn’t be.

While the miracle that he survived felt like more than enough for us, we had a hard time getting others to realize that he wasn’t going to be okay.

That he wasn’t going to be one of those happy ending stories.  I wanted it, boy did I ever want it.

What mother wouldn’t want their child to be healed?

It almost felt like the world was placing expectation on our child being “normal” and “disability free.”

I watched many friends and families remain in denial of our son’s severe condition for months, some even years after his birth.

Constantly telling us he’d catch up, all would be fine, he’ll learn to walk, and talk – you just wait and see.

Part of me wanted to believe them.  But I knew.  I knew with my entire soul the gravity of the situation.

I couldn’t run from it, I couldn’t hide from the fact that our child wasn’t one of those lucky cases where everything is fine.

Where you leave the hospital and the NICU was a distant memory that you looked back on with sigh of relief because the worst days were behind you.

Sometimes things aren’t all flowers and roses, and you can’t dust things with sugar and say things are going to be okay.

No one has a crystal ball, no one can ever predict if things are going to be okay.

It made things so much harder when I couldn’t get others to understand our son wasn’t going to be okay.

His brain damage was severe, irreversible – permanent and forever going to alter the course of his life and ours.

They wanted to believe it was going to all be okay, because they couldn’t conceive of anything else.

How would we have anything in common otherwise?  They would get to experience what they considered a perfect child within their own family unit, and we wouldn’t.

It’s okay to tell someone you don’t know how things are going to turn out.

Nothing is wrong with saying you don’t know what the future will look like but that you’ll be there regardless.

We need reassurance that our support system will still be in place – even if that means that our child doesn’t find healing or a cure.

We need to know that it’s going to be okay if he isn’t just fine.

We need to feel like it’s not shameful if our family doesn’t have a fairy tale storybook ending.

We need you to stop telling us it’s going to be okay – when we know that he isn’t.

We need you to accept it just as much as we’re grabbing and struggling to come to terms with it.

We need you to acknowledge that not everything in life winds up being okay no matter how much we pray and wish that they were.