Lash or Lavish

“Dad! Look at the kid! Ugh! Why does he look like that?”

My face turned hot as I whipped my son’s wheelchair to face away from the speaker. I turned my ears to the little boy and his father behind me, frantically willing the parent to grasp this teaching moment. Instead, my heart sunk as the man uttered a quick, “Yep” and hurried his boy away.

Angry tears stung my eyes and I struggled to swallow the lump growing in my throat. I knelt beside my boy and kissed his cheek.

His sweet eyes met mine and I whispered, “Don’t worry buddy. You are amazing. That dad and his boy really missed out on meeting you.”

My son’s face spread into a grin. “How are you always so nice?” I asked him. “I want to punch people. You forgive them and keep smiling.”

He smirked again as I gave his soft cheek one more smooch and wheeled him to my husband so I could take some time to sit and cool down.

As I re-played the events of the morning, I began to remember time after time when my son, as well as my other children with special needs, has endured cruel stares, comments, and interactions.

“What is wrong with him?”

“Well it’s not like he would even appreciate having greater quality of life.”

“How can she do school? It’s not like she can earn grades like other children.”

“You are adopting children with special needs? But what about vacations and holidays?”

“She creeps me out.”

“Is he going to die soon?”

“You are such a saint for caring for children like that.”

“You are going to take him/her on vacation too? Um…wow.”

“What is her lifespan?”

“Why is your kid so scary looking?”

“We didn’t include them because we didn’t know if they would want to be included.”

I could go on and on.

So often, my darling children have been overlooked, underestimated, and either unseen or too seen.

They have been straight up ignored. They have been treated like burdens and regarded as inconveniences.

While I realise that these interactions can be birthed from ignorance, inexperience, and even a messy but genuine effort to acknowledge my son’s existence, I always come to the conclusion that if people were willing to contemplate what they say and do can be received by others, the world would be such a better place.

As I replayed these painful memories in my mind, I asked myself what the answer was.

One thing that makes me livid faster than lightening is my children being treated unkindly.

Sometimes, I have responded to unkindness solely from my anger. I have returned rude comments with harsh words and inconsiderate stares or cold looks. Did these instances ever bear fruit or change on behalf of the offender? No. Not really.

Today, as I reflected on the radiant smile of my son and the endless grace, he tends to give others, I felt the answer was clear: the most powerful response to unkindness is kindness itself.

While rage may cause others to back down or feel shame, the times that I have seen change and teachable moments are the times when I have returned even the most horrific comments and stares with warm greetings and friendly introductions.

Anger and lashing out push’s others away. While at times that seems to be the easiest solution, my heart’s desire is to bring people together.

I want to be a creator of inclusion not isolation. I want others to see the amazing gifts and worth of my children, not the grizzly teeth of their mama bear.

If I truly believe that discrimination and unkindness must end, then I must be willing to lavish love on everyone around me. Everyone.

The very reason I am so defensive of my children is because they are human—humans who are magnificently created and inherently worthy of being seen, respected, and loved.

If I believe those things to be true of my children, then I also must believe them of all who are simply human and therefore deserving of abundant grace and kindness unending.

Holiday clubs are not for us!

Summer holidays. Time for much excitement as children break up from school for what feels like a ridiculous number of weeks. Time for trips away with family or friends, to the seaside or the country side, or to the hustle and bustle of a city. Time for holiday clubs and activities away from Mum/Dad. No? Not sounding familiar.

Don’t get me wrong, school holidays can be lovely, and spending time with Heidi can be lovely.

It can also be bloomin’ hard work! Keeping her entertained can be a challenge, getting out and about can sometimes be tricky (hurrah for the venues that have Changing Places by the way!), and maintaining the same energy levels that her teacher and one to ones have at school can be nigh on impossible!

We also don’t have the luxury of holiday clubs. Friends’ children are bounding off to basketball camp, or dashing off to dance school – they sound fantastic and must be so much fun, I’m not in any way taking their enjoyment away from them.

Heidi is non-mobile though, so there are restrictions as to what activities she can do, but more importantly, like many of our kiddies with additional needs, Heidi has to be with someone dedicated to her, who knows her well, and in our case, is fully trachi and gastrostomy trained. This somewhat narrows our circle of support. Add in to the mix the fact that me and Steve both work, and the 6 weeks’ “break” across July and August really does start to test our parenting skills as well as our patience.

This sounds a like I’m grumbling, doesn’t it? I’m sorry, I don’t mean to.

We have a lot to be thankful for, but the school holidays are just another reminder of how different our life is.

Everything has to be planned, and it sometimes feels restricting. We do of course do our upmost to make sure that Heidi has fun. We take her to as many places as we can, see friends, take in different sights and smells.

I sometimes have a moment where I wonder if she does have a nice time, but then you see her smile (we waited so long for that smile!), or notice the look of concentration on her face as she’s focusing on a particular sight, and it’s lovely.

She may not be able to talk, but she can certainly communicate and once you’ve tuned in to her, her blinks and eye-brow raises can really say so much.

I would love to be able to set up a holiday club for children like ours – fully accessible, all inclusive, fun and supportive. There’s the slight issue of being able to fund this, and I’m guessing there may be a few health and safety or OFSTED hurdles to jump over, oh and we’d need to find fully trained staff/volunteers to run it, and a suitable venue of course, but I’m not defeatist! If you know of a place like this that already exists then please tell me – I want to move nearby!

So yes, in summary, our school holidays are different to most, but that’s ok. It’s time we have together, and for each day of that I will remember to count my blessings.

Looking back at our Summer

The summer holidays are nearly over.

I absolutely love having Ethan home for the holidays.

Ethan goes to his dad’s every other weekend so when he’s at school we only spend proper time with him every other weekend. So the holidays give us lots of time to spend proper time together.

Don’t get me wrong the holidays are very hard. Having Ethan home all day means helping him as he’s unable to do anything for himself. He needs help for absolutely everything. He can’t do anything unaided. Finding activities he can access while I sort his sisters out is important so he’s not just sat there.

Manual handling during the holiday is no where near as much as it used to be but it is still present. He needs adjusting in his chairs, or rolling and lifting bits of him while changing him. While we’re out Ethan still needs lifting to be changed or to access swings. We’ve tried to do days out with changing places but this doesn’t happen all the time.

Physiotherapy is very full for us and for him. Stretching Ethan and helping him into different positions is hard. You are careful with moving around him but it still takes its toll on you while you are stretching, twisting and bending.

Attending to Ethans medical needs is very time consuming. That along with sorting the girls out with food and getting ready etc I feel like I spend my day doing water feeds, medicines, pad changes and feeding all the children. Fitting in the fun things in between is very hard and it takes a lot of multitasking and prioritising to make this happen.

The holidays have been a real mixed bag for us. We had our first full family respite stay at the hospice. We had a great week making amazing memories together. We had a visit from Elsa to sing to Ethan followed by a trip to the zoo to be a zoo keeper for the day feeding lots of animals. We also managed lots of time with the girls on their own giving them much needed one to one time with us.

Seizures unfortunately haven’t been great over the holidays. We’ve tried not to let them ruin our time together but that’s easier said than done. It really puts a downer on an amazing day when you see your baby boy so poorly and upset from seizures.

Sleep hasn’t been absolutely hurrendous, just all over the place like usual! When Ethans not at school he sleeps worse as he’s not being worked hard all day. I try my best to keep up the level he’s used to but it’s a lot harder with a toddler in the house now too! There have been lots of early mornings and very late nights too!

Usually during the holidays Ethan doesn’t like to relax. He likes to be doing things all the time. This holiday he has been super chilled and has loved being at home and out of the house. We have stuck to his routine and we even managed a pj day without him getting stressed. This is amazing for him and has made things a lot easier this holiday.

All this being said, I still love having Ethan home. All the hard work is definitely worth it. To see that gorgeous smile every time he sees me, to hold his hand whilst he has a seizure, helping him complete his physio or fulfilling all his bucket list things, every minute is precious and I wouldn’t change anything.

School is back in session

It’s almost time for the children to go back to school. I’m always excited when its time for them to go back until the day comes for them to finally go back.

Especially for our oldest son Jaylen who has special needs and is nonverbal.

If there is any change in his school, teachers or teacher aides its instant anxiety for me.

I absolutely hate change when it involves him. And for the past couple of years this has always happen.

So, every year on his first day of school I cry.

My husband must make me leave the classroom.

I remember about two years ago after being at the same school with the same teacher for four years they moved him.

On his first day of school I was nervous, and my anxiety was through the roof.

When we got to the school, we wheeled him in and met his new teacher as well as the aides.

All I thought about the entire time is taking my baby back home. I asked a million questions and they answered them.

They were very sweet but still I did not want to leave my baby with them.

After my husband saw that I was procrastinating he said let’s go.

I kissed my baby and we began walking to the door.

As I walked towards the door tears began to fall. My breath was short, and I just wanted to go back in that classroom to get my baby.

All while my husband is consoling me and reassuring me that Jaylen would be alright.

While walking down another parent notice I was crying and asked my husband was I alright.

She than asked, is this your baby first day of kindergarten too? My husband said no, our son is in the sixth grade.

The look on that lady face was priceless but if you aren’t a parent of a child with special needs you probably wouldn’t understand either.

We know our children need to go to school because they need to learn as well as socialize with their peers.

Its just something about putting them in the care of others that seems so hard to do.

How we can do better than exclusion

The opportunities to make good or bad choices regarding children and young people with additional needs or disability exist in schools, clubs and other settings every week.

I wrote an article for Firefly called ‘How Holiday Haircuts Teach Us About Routines’ that included a brief story about a youth leader being put through to my ‘phone one day whose opening line was; “I’ve got this lad in my group, he’s got ADHD and he’s an absolute nightmare. What can I do to exclude him?” In this article I expand on this story a little and try to draw out some more learnings from it for us all.

I’ll always remember that call, and the shock I felt when the leader spoke of exclusion.

Clearly there was a story here that needed to be listened to and understood, so I took a deep breath and asked the leader to explain to me what had happened…

This was a church youth group’s mid-week club night and it seemed that during the ‘talk time’ this lad had started to get a bit unsettled, showing early signs of anxiety and stress, struggling to cope with the expectation that he was to sit still and listen to the talk for 10-15 minutes.

Seeing these signs as disruptive behaviour, the leader had told him that as he couldn’t sit still and listen he wasn’t going to get tuck this week.

The lad liked tuck (who doesn’t like tuck!) and so things ratcheted up a notch or two with the lad becoming more agitated and unsettled, and now feeling upset that he was going to miss tuck!

The leader responded by saying that as the tuck penalty hadn’t worked, the lad was suspended from club for a week and so couldn’t come next week.

Next week was party night and the lad had been looking forward to it immensely, so things continued to escalate and eventually he was sent home.

The leader told me that this lad had always been disruptive during talk times, could not sit still and listen, and so this had been happening for a while.

The leader had reached the point where he just wanted to exclude the lad so that the problem would go away.

I rewound the conversation with the leader asking him to identify all the times that opportunities had been missed to support this young person, to recognise his needs and to help him to manage his stress and anxiety.

ADHD is often misunderstood as being all about behaviour, but there is often a lot more going on which can include:

Low concentration; finding it hard to focus, may fidget, may fall behind others.

Reduced attention to detail; can also struggle with problem solving.

Impatience; can find waiting or queuing hard, may shout out answers too soon or interrupt.

Social skills; can find it harder to make or keep friends, sometimes talk too much, struggle with facial expressions/body language (very important elements of communication).

Now this list isn’t comprehensive, and not every young person with ADHD will struggle in all of these areas, however I think if I was finding some of this hard, and wasn’t getting much if any support to help me, it just possible that it might eventually work its way out in my behaviour!

As I explored this with the leader and we looked at the opportunities that had been missed to support the lad earlier, there were many.

The leader had mentioned that the lad had “always been disruptive during talk times…” So, this was a recurring, weekly event.

Albert Einstein may be misquoted as saying that the definition of insanity is doing something over and over again and expecting a different result, but the saying still holds true.

Knowing that talk time was difficult for this lad, but doing nothing differently, nothing to support him, and expecting a different result, was never going to work.

Understanding that the lad found this part of the programme hard, and so both modifying talk time so that it was more inclusive, as well as supporting the lad with a tailored strategy to enable him to stay engaged, could have made a difference.

Once the early signs of the lad becoming anxious and stressed started to surface, instead of resorting to punishing the lad by saying he couldn’t have tuck, the leader could have used a pre-agreed strategy, arranged with the lad himself, or with his parents if he was younger, to help him to cope.

This would be an individual plan, but could include access to a ‘chill zone’, or the use of fiddle/fidget toys, among a range of possible solutions.

When things had escalated further, the lad’s increased need for support and help was met with further unfair punishment.

Children’s and youth work is relational, we build trust and mutual respect with children/young people by investing in relationship building with them.

What this lad was learning here is that at a time when he needed support and help the most, he was getting pushed away.

If the leader had invested in the relationship with this lad, it is possible that the lad may have been able to alert him earlier to the anxiety and stress he was feeling, before things developed to the point where they were overwhelming him.

The leader finished our call saying that he was going to call the parents of the lad straight away, to apologise and to invite him to back to the party the next week, by which time a strategy to support the lad, worked through with them as his family, would be in place and known by the whole team.

Taking the time to understand each child or young person individually, to understand what they find hard and why, to understand how they cope (and sometimes fail to cope) and why; to help them to understand that we are there for them, to help them and to support them, all of this is so vitally important.

So often the challenging behaviour that we might see and wrongly judge them for is a final cry for help when we’ve missed so many other pleas for help and support already.

It’s a last desperate way of trying to get our attention, or a final attempt to respond to their overwhelming urges.

As I’ve talked about before, however we look at this, we must put the child or young person first; do everything we possibly can to remove or limit stress and anxiety, ensure the necessary routines are followed, and so help them to cope.

Putting their needs above our own, us doing the adapting rather than expecting the child to.

Tuck anyone?

“Do you think you’ll have another?”

Well…..that was the question that caught me off guard a little! It first came with a nod to Heidi, when she was about 6 months, and more recently as I was chatting about her (now 4) and her additional needs.

Did I think we would have another baby?

I know people ask these things with genuine interest / care (most of the time!), but I do think there needs to be a little caution as you never really know the circumstances a family may be going through.

My honest answer was “I don’t know” but it’s something I have pondered long and hard over, on many occasions.

When I was younger, I wanted to grow up, get married and have 2 children.

As I got older, I realised that life is rarely that straight forward.

I was in my late thirties when I met my now husband Steve, was very fortunate to fall pregnant quickly when we decided we wanted family, even though I was classed as a “geriatric first-time mum” (ouch!), and counted my blessings every day of my healthy pregnancy.

When Heidi was taken so poorly just after she was born, our world was tipped upside down.

My ideas of how having a baby would be were nothing like our reality, but we did what we needed to do to get through each hour, day and month.

Once we were home and settled, I kind of thought about having another baby, and really thought it would be a good idea.

I think part of that was so that I could have the “normal” experience of having a baby – I hope that doesn’t sound selfish. I love Heidi, lots, but her start in life had been tough on us all and I thought having another would help ease some of the pain.

I also thought that adding to our team, with a sibling, would be great for Heidi too – she would have her own little buddy, who would be around longer than us (I do worry about when we’re not here, but that’s a whole other blog!).

But that in turn made me think about how that second child would feel – they might see things that would be upsetting, might feel left out as Heidi needs so much of our attention, may resent us as parents.

I’ve seen other families though and the siblings are some of the most well-balanced, loving, caring little people you could wish to meet, so that dispelled my theory.

Of course having a baby requires a certain, ahem, things to happen – and without wanting to speak on behalf of other SN parents, quality alone time can be rare.

Our lives are busy with everything Heidi-related, and at the point she is settled and asleep, I’m either busy sorting out the meds, feeds, clothes, appointments etc. for the following day, or wanting to get some sleep myself (or occasionally writing a blog!).

Add in to the mix having a carer 2 nights a week, and any form of romance is way down the list.

I also joke about being too old and fat to have another baby – I feel like I have aged so much since having Heidi, and have certainly put the whole exercise regime I used to love so much on the back-burner, but then I also remember how I already cope with a lack of sleep, so would having extra company on the night-shift be so hard?

We had, at one stage last year, seriously talked about fostering.

It’s something we would love to do but the commitment is just too big at the mo; foster families have to have regular meetings (totally understand why), and can face their own challenges, we just didn’t think it would be fair on anyone – plus I have no idea how to look after “typical” babies, give me a feeding tube or trachi and I’m fine! – maybe we’ll come back to in the future.

Hats off to those who do it, what a gift.

So, for now, we’ll let fate decide, happy as our team of 3.

My answer remains as “I don’t know”.

Much safer to ask if you think we’ll get a dog, you’ll likely get a resounding “yes” (from me at least!).

Coordinated Chaos

This year has been one for the books!

This momma finally put on her big girl underwear, and applied for the surgical technologist program.

I have been putting it off for so long, it was almost embarrassing to contact the many, many colleges I’ve attended for transcripts.

But, I did it and made it into the 1 of 18 seats for the program.

Before applying, I kept doubting myself and making excuses how I did not think it was possible, how I was going to find childcare for my youngest, and how it would be financially possible.

If it wasn’t for my husband pushing me to apply and assuring me we could make it all work, I would have put off another year.

Now one semester down, I start clinicals in September.

I am excited for the hands on part of the program to start and learning through great instructors and healthcare professionals.

Back at home, my kids have survived, we have still stayed on track with bills and the extra finance of going to school, I have found childcare and actually built a great friendship through that (not only for myself, but my kids with her kids too!) and life has just done its thing.

Sure dinners have consisted of a little more take out than normal, clothes have gone longer without being washed, and there have even been days where I have had to shorten play time in order to get enough study time… but like I said, life continued to truck on.

Sometimes we spend more time making excuses for something we are afraid to start because it’s new, scary and unknown.

Change is very scary for families settled and comfortable in the ways of life as it stands.

You are afraid to try and fail. Afraid to fail in other aspects of life, when you dedicate your time to this new thing.

But the worst thing isn’t failing. It is not taking that chance, because you never know what could be.

I have had this dream to become a surgical technologist since I graduated high school in 2008 and first started attending community college for my basics in 2009.

I spent 10 years making excuses and putting it off for different reasons.

I am so proud of myself for finally taking the plunge and working towards my career dream.

I encourage you to take that plunge as well, for whatever it is that you have been putting off for days, months or even years!

Waiting Room

Here we are again. Waiting. Waiting. Waiting.

What will the news be today? Will we hear of hope we have ached for? Will we learn of findings I cannot find the strength to consider?

Perhaps there will no answers at all but a million more questions, yet another referral, and more waiting. Waiting. Waiting. Waiting.

Beside me, the nervous tapping of a mother’s foot as she holds her baby close hammers into my anxious thoughts.

Our restless eyes meet one another and still just long enough to share a sympathetic look and tight smile. We don’t have to know each other. We just know.

I silently plead with God for good news for that mama today. And we wait. Waiting. Waiting. Waiting.

I take a deep breath more audibly than I had intended and shift in my vinyl seat. My sweet boy snoozes beside me.

I am so thankful for his rest and escape from his mama’s nerves. I look around the room and allow myself to take in each person who sits and waits—some for good news, some for bad.

In my mind I start to calculate the number of hours I have spent in waiting rooms the last week….month….year…three years. Whoa. Too big of a number.

Will I ever be done waiting? Waiting. Waiting. Waiting.

But slowly, a realization slips into my mind and grabs hold of my heart.

Time is precious. If I must spend hour after hour waiting, I must wait well.

What if a waiting room became a place of mundane miracles and human connection instead of anxious hearts and racing minds?

No longer will I allow these hours within the waiting room to be defined by slavery to the minutes ticking by and thoughts of terrible news.

My eyes fall on a couple in the corner struggling to manage the behavior of their child who has additional needs.

I dig in my purse for a scrap of paper, grab a pen from the front desk, and jot a note in penmanship that reveals my nerves in shakes and quivers: “Hi! I am fellow special needs mama and just wanted to tell you what an amazing job you are doing. Your love for your daughter is radiant. I know there are so many hard days. I don’t know you but I am for you. God bless you.”

From that day forward, the many waiting rooms I find myself sitting in became places to spread hope, unity, and kindness no matter the relief or heartache that await us.

I no longer simply wait. I write encouraging notes, I start conversations, and I hear people’s stories.

I go out of my way to make my little ones laugh and take minds away from the fear of the wait.

Just like that, the waiting room lost its grip on me.

It is no longer waiting…waiting…waiting. It is loving…laughing…living.

When it comes to the miracles that take materialize in the mundane every minute matters.

How Special Needs Parenting can be a circus

Special Needs parenting can be a bit like a circus sometimes, maybe more than we would like to admit! Here’s a (hopefully) light-hearted look at how at times we can play many of the familiar roles of circus performers…

Circus (noun): a travelling company of acrobats, clowns, and other entertainers which gives performances, typically in a large tent, in a series of different places.


Most of us probably play this role all the time… keeping all of the balls in the air, desperately trying to keep them all going in the right direction even when other people are lobbing extra balls at us to add to the pressure.

The only difference is that the circus juggler comes to the end of their performance and, with a carefully choreographed drum roll and “ta-da!!” from a trumpet somewhere, catches all the balls, takes a bow, and leaves the ring for a well-earned break.

Special needs parents, on the other hand, need to keep on juggling forever like some Duracell bunny whose batteries never run out!


The clown is jolly, full of laughs and jokes, but when you look closer you see that the painted-on smile can mask what is beneath.

Clowns can be hilarious on the outside, the life and soul of the party, but inside can be hurting, struggling, sad. Special needs parents can wear a positive face while being broken inside, the forced smile covering the pain within.

We can also look as ridiculous as a circus clown most days too… getting dressed at all can sometimes be a ‘win’, and vaguely matching clothes? #unlikely

I’m reminded of the words to the song… “But where are the clowns. Send in the clowns. Don’t bother, they’re here.”


Then there is the acrobat, swooping overhead or teetering on the tight-rope, carrying out amazing feats of balance and agility.

Sometimes there is no safety net below to save them if they fall and so the risk is high.

Special needs parents sometimes have to summon super-human abilities to be everything, and everyone, that our child needs.

Sometimes we can even be in two places at the same time, and we all are equipped with eyes in the back of our heads as well as a natural ability to balance everything!


Oh, those times when we swallow the sharp things we’d like to say to people; perhaps to the unkind person in the supermarket who has just scored our parenting as ‘poor’ or been unkind to our child who was having a meltdown.

Or the professional who still firmly believes that three years of reading books teaches them more about our child than our lifetime of parenting has.

Sometimes swallowing those swords hurts; sometimes we wish people knew how much their words hurt too.


And keeping the whole circus going, coordinating all of the different performers and acts, ensuring that everything keeps to time, is the Ringmaster.

Special needs parents are great ringmasters, the P.T. Barnum’s of their family, running the ‘show’ like clockwork and ensuring that all of the educational, health and care needs of their child are met, as well as ensuring that they are loved, valued and included.

The former three might sometimes need a whip, the latter three just need us to be there, alongside them in the ring.

The tent

All circuses have a tent, the place where the show is held, where the equipment all arrayed ready for the performances, where everyone watches the show.

For special needs parents it can sometimes feel like we live in a circus tent… everyone watching and waiting for something funny or tragic to happen, all the extra unusual equipment we may need for our child, and harking back to the days when there were performing animals in the circus, some parents would be familiar with the unusual smells!

But if special needs parenting is a bit like a circus, we are presented with a choice.

Either our version of the circus can be a tired, shabby looking one without much to interest or attract anyone; or it can be spectacular, a really awesome place to be, fun for us, our children, and anyone who cares or dares to turn up.

Let our circus be the very best that it can be, performing to the utmost of our ability, and inviting others to join us for the show of a lifetime!

Roll-up!! Roll-up!!