Special needs families: Plateau’s and where to go

What do you do when you’ve hit a plateau?

You are doing the same thing over and over with fewer and fewer results.

I often find myself falling into plateaus with my weight loss.

What worked for the past 3 months isn’t working now. I am back to gaining weight.

When I find myself here I change up my routine and what I am doing.

I change how often I am working out, make sure to get adequate sleep, drink more water or anything to help me get over the hump.

We recently found ourselves in this situation with Sawyer.

We were doing what we could at home but the pandemic had vastly reduced our physical therapy hours.

Sawyer was at a stand still and we were working with him every day but needed direction. [Insert a random Facebook comment here] A mutual friend of my uncle commented on a post about my son.

She commented that we need to meet this therapist named Josh in Ohio.

I was sceptical at first and even had to reschedule a few appointments.

Going to Ohio for 3 full weeks wasn’t a small undertaking for our family and it made me extremely nervous.

After hearing Josh speak to us and hearing what he had to say we knew it was a God moment.

It was a moment that God pushed us to exactly where we needed to be, despite it being scary.

Sometimes the best things are the scariest things in life.

In one simple video call Josh gave us HOPE.

He gave us hope for the future for our son. He said things that made so much sense about Sawyer.

He didn’t diminish the fact that Sawyer’s brain injury meant he would never accomplish some things.

He said that often times these kids accomplish so much more.

After our call I looked at Sawyer’s nurse, who has now become a sister to me and we both just smiled.

We felt the hope and saw the future for Sawyer that felt so far away.

Sometimes that ’s all it takes but for us, this is the beginning of the story.

Follow the next blog for the months leading up to therapy and the time in therapy.

Special needs parenting: Living with Anxiety

Appointments with my son these days always lead up to dread, and ultimately anxiety.

Not only within myself, but he too, suffers from the anxiety.

At just seven years old, he already cringes and fears the mention of having a doctor’s appointment.

I sometimes look back and wish things were as they were when he was a baby. So innocent. So unaware of what was to come, even though the tests and procedures where of benefit to him.

You can only keep them unaware for so long.

Simple procedures like a routine dental cleaning, have now turned into something that needs anaesthesia.

Without something to calm his nerves, or put him under, my son cries, gags, and even vomits at the attempt to look into his mouth.

And the hardest part? All this doesn’t make any future appointments easier.

No matter how I try to explain that this procedure doesn’t hurt this time, that this is super quick if we just cooperate; we always end up leaving with more scars on top of the ones he already has formed in his memory.

Seven years old, and I see him worry about every little thing. Is there a way to cope without medication?

Without adding another little pill to his ever growing collection?

I have yet to speak with a doctor about it, as I am trying to learn and work through it with him myself.

It was not until my early adulthood that I learned I lived with anxiety. I chose the route of medication.

But it has not been an easy process.

I am old enough to know that certain things aren’t how it should be, and I am able to successfully communicate that with my doctor.

We are able to work together to change or alter medications to find the right fit.

But when you are seven, your capability of doing so drops dramatically.

For now, we must find ways to cope and learn together. Life is always a learning process.

But having a child with special needs, we usually find ourselves having to find ways around the “norm”.

Finding what works for us, and running full force with it until it no longer works.

Then we come back to the building blocks and start again.

Living with anxiety isn’t something that I want to cripple my son in living his full life.

But in a world where every day there is something to worry about, how do we work past that?

How attitudes change depending where people meet us

I watched closely as my 12 year old son carefully chose some more peddles from the stony beach, put them in his beloved red bucket, then walked a few steps to the water and dropped them in one by one.

He was always within reach, smiling, laughing and making his usual happy noises. 

After a few minutes I noticed a couple walking towards us as they walked hand in hand along the beach.

As they got closer I noticed they moved off course slightly and I assumed, like so many do frequently, that they were trying to avoid us.

Instead they smiled at both my son and myself and even initiated conversation. 

‘Lovely day for it isn’t it? He sure looks like he’s having fun there!’ 

I replied briefly back as they nodded,smiled and walked on. 

No stares. No questions. No hint that anything was different about my child.

Later the same day I took my son to the park. It was a very different experience there.

While he struggled to navigate and climb equipment for children less than half his age I noticed other parents stare, younger children pull back and conversations get quieter.

My son was out of place, drawing attention and his noises and mannerisms made people very aware he was different.

Similar things happen in shops, in swimming pools, in shopping centres or restaurants. 

People’s attitude to my disabled non verbal son seem to vary greatly depending where they meet him. 

I often wonder if that’s down to how different my son appears to others in certain situations or how relaxed other people are depending on where they are?

Maybe the couple on the beach felt they could distance themselves naturally if they wanted to much easier, and less conspicuously, in the fresh air than they could in say a shop or cafe?

Or maybe my son’s behaviour on the beach mirrors more what other children might do there and therefore his disabilities aren’t as immediately obvious?

Would that same couple have been as friendly and chatty if they were on a bus and saw us as they were at her beach? 

It’s hard to know really. I do often think in places like the park that still so many are influenced by others.

If one family beckons their child to move away from my son often others will copy. If one person in a restaurant stares then others sometimes do the same. 

What happened at the beach that day should be so unremarkable, so everyday, that my mind saw no need to really remember it.

Sadly, for many families like mine everyday friendly encounters like that are still so rare that they are treasured for months and years to come. 

One day I hope that the vast majority of interactions I have with others when I have my son with me are like that moment on the beach.

It shouldn’t matter where you meet my son, or anyone different for that matter, we should always  smile, chat and see them as just as valuable and deserving as everyone else, whether that’s at the beach, at the park, in a shop or anywhere else. 

Leaving Lockdown – Learning To Listen

We are surrounded by noise, whether it is the noise of people around us, the constant noise of technology, the noise of kitchen appliances, the noise of cars and trucks, emergency vehicles, planes and trains.

There is noise everywhere and perhaps that is why we become less good at listening… listening to each other, listening to our children, listening to ourselves. 

Just like it’s harder to hear the sounds of nature around us, the song of a bird or the cry of a fox, it’s harder for us to tune in to other people or our own ‘voice’.

On top of everything else, over the last 15 months, as we’ve lived through lockdown after lockdown, we may have been so unsettled, anxious and worried about everything that perhaps we’ve been less inclined to just listen.

Less able to mute the concerns that have dominated our thinking and to just listen…

Listening to each other
The world, and indeed our own country, is filled with conflict.

People taking ‘sides’ and being unwilling or unable to listen to different views, different perspectives.

If you believe what I believe you are ‘right’, if you believe something else you are ‘wrong’ and in many cases the vitriolic real life ‘slanging match’ or online ‘pile on’ that follows is horrible to witness.

Whether it’s politics, equality, the response to COVID-19, or a hundred other fault lines that have divided us, those divisions run deep.

We seem to have lost the ability to listen to someone who thinks differently to us, who is in a different ‘tribe’.

To respectfully discuss alternative points of view, to be willing to learn and maybe even to change our minds.

In many cases our identity becomes enmeshed with our strongest held views. Is this healthy? What does this do to our mental health? What does it do to our relationships with other people? What does it do to our society? What example does it set for our children?

Listening to our children
Our children’s voices seem to have been lost more than most over the last 15 months or so, especially children with additional needs.

They struggle to understand the rage that people show when someone disagrees with them; they can’t easily comprehend that the pressures of the last 15 months have been hard for many people to keep in.

But they have experienced great pressures too, a loss of school time, separation from family and friends, being shut indoors for months on end, their screens becoming their closest companions.

The mental health toll on our children has, and continues to be, massive.

Are we listening to them, really listening?

Reading the signs in their body language and facial expressions, their reluctance to do things, their withdrawal?

Although bit by bit we are returning to the ‘new normal’, for our children this is still a huge change.

Are we listening to their worries, treating their concerns seriously, supporting them and being there for them even though we are struggling ourselves?

Listening to ourselves
With all that is going on, that little ‘inner voice’ inside of us can be drowned out.

The plaintive cry of “I’m exhausted!” goes unheard, or worse, ignored.

We keep on keeping on until we collapse, having long since gone past ‘empty’ on our physical and mental health fuel gauge.

We think that we ‘can’t’ slow down, we ‘can’t’ think about ourselves, we ‘can’t’ do some self-care… we’re just ‘too busy’, and ‘too many’ people depend on us.

But what good are we to anyone when we’ve finally hit that brick wall that is the inevitable destination if we don’t listen to ourselves.

What will happen if we wake up one morning and just can’t get out of bed, no matter how hard we try?

What will the people who depend on us do when we’ve experienced a physical or mental breakdown? When we’re the ones who become dependent on others?

Friends, let’s listen better; let’s listen to each other, let’s listen to our children, let’s also listen to ourselves.

We might be easing slowly out of lockdown, but if we don’t listen what kind of a world are we emerging back into?

Let’s learn to listen well, and learn to respond well to what we hear.



Age is just a number

When people ask how old Isla is we currently reply 12 but always need to give an explanation. “She’s 12 but much younger”. “She’s 12 but more like a preschooler”. ‘She’s 12 but she’s not”.

All through a child’s younger years until adulthood they are measured against milestones.

When your child’s age doesn’t match up to these developmental goals it’s hard to know where they sit.

When Isla was younger it was a little easier to make sense of. She always was 2 years behind with her behaviour.

That didn’t seem too bad until we had to send our 3 year old to school. Over the years the gap has widened considerably.

It is hard to quantify.

You could say in some ways Isla is stuck in her preschool years enjoying Thomas the Tank Engine, Paw Patrol and Disney Cars.

Her ability to write and formulate sentences is very basic. Her behaviour and reactions can be very immature like that of a much younger child.

However there are some aspects that are much older. Such as her enquiring mind, observations and a little bit of tween sass.

Her physical body doesn’t know her mind is much younger and still develops as it should. She is becoming a child in an adult’s body.

Age becomes irrelevant.

When I compare Isla to her sisters at the same age their lives seem so far apart. I cannot even comprehend or imagine what she “should” be at this age.

It really is a strange place to be. 

We navigate life with Isla with blinkers on staying in our own lane not wanting to catch glimpse of normality. It is easier like this for Isla and for us.

It is the same when people ask what year she is at school.

When people enquire and we say that Isla is going to College next year people tend to have a preconceived idea of what that means.

Isla’s reality for normal college life is so far away from the norm how do you put this into words and make sense of it.

This next stage of growing up to become a teenager doesn’t seem like a step towards opportunity and independence like it does for others.

Those college years fly by so fast and for Isla it’s the start of navigating uncharted waters transitioning into an unstructured life trying to find purpose.

Comparison is the thief of joy.

We have to create a new normal for Isla and age and the expectations it brings has no place in our lives.

Isla is doing amazingly well and this is measured by her happiness, her willingness to try new things and finding her place in this world.

This is what we focus on, trying to take one day at a time and not comparing her life with others.

Special needs families: Social Media Overhaul

In this social media obsessed day, it’s easy to get caught up on someone’s Instagram feed or Pinterest page and question everything about your parenting technique (and, do I even have a technique?) because someone else is making beautiful crafts and baking and taking their kids to all the best museums.

Am I failing my kids by not making their lunches into picture-worthy Bento box treats?

Frankly, I’m more concerned that they eat fruit most days, and my aspirating son doesn’t have anything too dry to eat.

Am I failing my kids because they aren’t seeing where every single culture around the world is at right now?

I’m more concerned that they learn to love and help the kids in their own neighborhood and city.

Am I a failure of a mom because I didn’t shower in a couple days, and my perfect seasonal outfit is sweatpants and an oversize sweater?

Do I sound a little bitter? Maybe I am.

Maybe I am a tiny bit jealous of the Instagram moms who can accomplish all these things.

Maybe I am jealous of the excess time I had before my son was born with cerebral palsy. Maybe I wish I could do everything, be everything to all my kids.

The reality is that there is only so much time in a day.

I try to spend a little quality time with each of my children daily, but sometimes I fall flat.

My son gets extra attention by default; he needs me to listen longer because he is trying so hard to be verbal.

It often takes me six times hearing it before I process what he’s saying.

He also needs extra time to go up the stairs, to be put in and out of a structural vest, his AFOs, his wheelchair.

Sometimes it’s all I can do to promise them that “maybe tomorrow” we will sit down together to do that puzzle, to color in a book, to paint our nails.

Or I try to do one of those things while putting someone to bed, or reading a story, or feeding my son.

I’m honestly not the best at multitasking though. Someone always feels slighted.

I’m sure my kids wish they could go to all the museums, too, and do all the crafts, and bake all the beautiful Pinterest-pinned desserts.

I’m sad I can’t give them those things, but the truth is I cannot be all things to all people, all the time. It’s not realistic!

So what’s a modern mom to do?

The crucial thing is to stop comparing our lives to someone else’s.

Sounds easy, but it isn’t (especially in the U.S.). It’s in our nature to compare to one another, but just because something is in your nature does not mean it should be given into.

We simply must reject the idea that we need to be like someone else.

We need to embrace our differences and proudly jump into the social waters, ten minutes late, with all our extra equipment, and post about that.

The more posts about our reality are out there, the more they are seen and read. A

bove all else, our community is strengthened by seeing our stories published, and that is powerful!

Special needs parenting: A new diagnosis…

Have you ever been in the situation as a special needs parent, where you suspect your child has a certain condition, but you are kinda dreading getting it investigated or getting it formally diagnosed?

I know I’ve personally been in that position a number of times over the last 10 years…

My little (or not so little now) girl Brielle was born extremely prematurely at just 25 weeks and 3 days gestation.

She weighed a grand total of 801 grams (1lb 13 oz)- less than a 2lb bag of sugar!

This put her in the ELBW category (which no, does not have anything to do with an elbow as it sounds! It stands for extremely low birth weight) and meant she was VERY very sick and fragile.

She spent over 6 months in the NICU and underwent many surgeries and treatments, it was really touch and go if she would survive, and was definitely the hardest time of my life.

Fast forward 10 years and my miracle baby Brielle is thriving and growing taller and stronger by the day.

She is almost TOO strong now sometimes for us to manage as she cannot walk independently and is SO strong willed she often pulls us the opposite direction we need to go, or jumps up on us like a baby koala to be carried.

Her 1:1 asked me recently what was I feeding her because she’s so flipping strong! (I replied, spinach like pop-eye of course.)

Which is true… I make her PEG-feed blends as she’s on a blended enteral diet and does so well on it).

Yesterday when I brought her to school, she dropped to the floor just as we got in the first set of doors.

When her 1:1 and I struggled to get her back on her feet, she wedged herself between the door and wall, not wanting to go to her classroom.

She is getting very stubborn and moody these days…She is having more and more meltdowns, and getting very fussy if things do not go her way, or her routine is disrupted.

I finally got to speak to her Pediatrician yesterday and expressed my concerns over her change in mood and behaviours over this past year.

I’m seeing many traits of ASD and that is my suspected new diagnosis.

She can get so worked up and upset that she hurts herself by thrashing, kicking, banging her head against things or hitting herself, biting her hands and arms, throwing herself around.

I’ve had to collect her from school 4 times in the last few months as they just could not get her settled and she was an absolute state.

I know it will be really hard to assess or diagnose for ASD because Brielle is also mostly blind, and she is profoundly deaf with bilateral cochlear implants.

She cannot speak due to her deafness though she communicates in sign languages and gestures.

Thankfully there seems to be a local specialist psychiatrist who has much experience with children who are deaf and those with learning disabilities so plan to get referred to her.

We just want the best for our precious girl and to know how to support and communicate with her in a way that nurtures growth and independence.

Isn’t that what we all want?

Special needs parenting: Your Mental Health Matters

May is Mental Health Awareness Month in the United States, and it’s essential for families of children with special needs to be aware of caregiver burnout and how to prevent it.

Parenting is challenging enough, but parents and caregivers of children with special needs deal with an added layer of stress.

Sometimes several layers.

Caring for a child with special needs is often equivalent to a full-time or more because many require round-the-clock care.

Parents of children with special needs are extremely prone to caregiver burnout.

I’ve been there, done that.

Several years ago, I found myself sobbing in a doctor’s office after the stress had taken its toll.

I’d had back-to-back illnesses for several months while caring for two kids with multiple complex medical and behavioral issues.

The physical and mental health consequences of chronic stress-related to raising kids with additional needs are real.

Depression, anxiety, sleep issues, chronic fatigue, and relationship problems are just a few of the issues that can lead to caregiver burnout if they go untreated.

One of the issues that parents of children with special needs have- and I am guilty of this myself- is that they feel like they should be able to do it all.

No one knows our kids as well as we do, and if you’re like me, it’s rare that you find someone you can trust completely with their care.

Unfortunately, when this happens, basic self-care gets put on the back burner.

A good night’s sleep, staying well fed and hydrated, and getting enough exercise is often unheard of when caring for medically complex kids, much less getting to spend time away with your spouse or a night out with friends.

Isolation and exhaustion are common in families who have children with special needs, and even more so if they don’t have a local support system.

Even with local support, many people are also afraid to ask for help when they need it.

I’ve found that many people genuinely want to help but may be unsure of what exactly is needed.

Asking for help with specific things makes it easier for family and friends to pitch in when you need it.

The saying is true- you can’t pour from an empty cup.

Sometimes it’s easier said than done but finding just a little chunk of time each day to do something you enjoy, or that’s just for you can go a long way.

Special needs parenting: Running into Spring

In my previous blog, I spoke about how March was the month for me to start a fresh chapter, a time for me to really dig deep and do what I want to do.

I must say, things are moving rather quickly and I love it!

Over the past year, with all the home-schooling and virtual learning, I have been able to get an insight of Zachariah school life, and get a real good feel of how his day looks when at school.

I have also had much deeper conversations with his teachers around his development, and how best to help him push further and achieve new goals.

Over that period of time, there were also conversations around me possibly looking into teaching/working in the school myself.

Like I had touched on in my previous blog, I have put my all into Zachariah, home schooling included, I’m pretty sure I came across as a teacher’s pet, haha!

The thing is, I really enjoyed it, I loved preparing the lessons, and enjoyed seeing them come to life.

I learnt so much about Special Education, learning through play and exploring the senses. 

It was a once in a lifetime opportunity I feel, to get an insight into what Zachariah gets up to at school and work with the teachers, a lot different from notes in the home diary at the end of the day.

I now really know what sensology is, and why it is used. And I see the importance of repeating activities, although this was probably the part I struggled with the most. 

All this got me thinking.

I did once have the dream to be a teacher, I went to College and University with this in mind, I have qualifications. I have the passion for children and giving them the best opportunities in life. 


Do I have the capacity mentally? 

Am I able to commit to helping other children?

This isn’t a job that you take lightly, nor is it something you can just walk into, and or walk away from. We joked about it, but is there something in this. 

I had spoken to Tim about going back to work a few times, and about starting a career, but we had always gone round in circles, coming back to the fact that Zachariah needed me to be available, and the constant jobs, appointments etc would be too hard to juggle. 

I guess there’s an element of fear too, I haven’t worked in a structured job for 7 years, as I started Maternity leave in March 2014, and never returned as Zachariah needed full time care. 

Then one day I just so happened to be looking on the council jobs website and came across a Midday job at my son’s school!

It made sense!

With very little confidence, I went for it.

I only went and got the job!. 


I have no idea if now is the right time, do we ever truly know?

However, I feel ready to commit, and start a career, and this job seemed the perfect place to start as the commitment was only a few hours a day, term time only.

With this I have also started a Diploma in SEND. It feels so good to be doing something again.

I had started to feel deflated and almost given up on the idea of working again, being a full-time carer is an incredibly huge thing to do, but it doesn’t have to be your everything.

There needs to be space for YOU too, whether it be a career or something completely different, YOU are enough to achieve outside the box you may have put yourself in.

Much love,