To TuBE or Not To TuBE: That is the Question

Like all her skills, it was delayed but we did get to the stage where we could explore finger foods and different textures and she devoured quavers and pink wafer biscuits (bite-dissolve texture).

Lou Lou loved her food.

But then we’d hit a bad patch with seizures and we’d see her skills regress.

The worst time coincided with chicken pox.

Lou Lou was covered in spots and must have had them in her mouth and throat because she refused food and drink for days on end.

We had to syringe water into her mouth and occasionally she would take some spoonfuls of yoghurt or custard.

Around the age of 2, Lou Lou spent some time on the ketogenic diet to try and control her seizures.

It didn’t work in her case and didn’t make mealtimes any less stressful as it was important to measure everything and ensure she ate every spoonful.

She did put on weight due to the high calorific content of the food.

Normal feeding resumed and we tried to help her regain her skills.

She especially liked to drink.

She loved her orange sippy cup and would lift it herself and gulp from it.

However, it was not to last.

She started to get more agitated during mealtimes.

With a non-verbal child it is hard to know what is happening and we used to interpret it as a sign for more or to go faster.

Sometimes she would cough or get a rash across her chest. The rash would fade quickly but these were our warning signs of possible aspiration.

We reverted to smooth pureed food and started thickened fluids as a precaution and, following a video fluoroscopy were told to give her single sips only.

Managing single sips proved difficult so she now has liquid thickened to a custard consistency from a spoon.

Feeding times got more difficult and she started to lose weight.

It’s hard to get much volume into her and she likes to have her hands in her mouth even during mealtimes so it can be a messy affair.

Throw in her agitation and increasing fussiness when presented with savoury foods and feeding has become a real chore.

She is exhausted after school so feeding becomes even more risky and when seizures increase or she is ill, we decided we needed a back-up plan.

Lou Lou will be having a gastronomy in the next few weeks and I’m really looking forward to it taking the pressure off mealtimes.

She will still be able to eat some meals orally and feeding can hopefully become a family social affair again.

All her medication, fluids and top-up feeds will go through the feeding tube and it can be used as a back-up during illness.

We’ll also be able to monitor her intake better and hopefully eliminate hunger as a reason if she wakes in the night time.

I’m hoping we’ll see a happier and healthier little girl as a result.

Why “Debbie Downers” Are Detrimental on the Special Needs Journey

It doesn’t matter what we call them as long as recognize that they do exist and that they can have can have a significant impact on us as parents and our children on the special needs journey.

These people can be a therapist, a doctor, a family member, a close friend or sometimes that occasional stranger we’ll pass on the street.

I remember our first Debbie Downer – a NICU nurse who did all she could to encourage us to remove life-support.

We’d hear things like “He’ll have no quality of life,”or, “You’re young enough to start over.

And, “It’s the humane thing to let him go.

These types of continual pessimistic perspectives can take a huge emotional toll on a special needs parent.

We are already in a state of balancing bouts of grief and joy and we desperately need something positive to cling to.

I kept searching for Positive Polly or Pete.

Where was he or she?

Where was that person that came in and said hang in there, he’s a beautiful little boy, he’s strong, give him a chance, only time will tell, never give up hope, or I’ve seen children who have overcome bad odds, it can happen, just keep believing.

Where was that person?

Shortly after I  started finding a field of Debbie Downers.

Therapists in particular lined up to hand me sheets on milestones that I was told my child would, “inevitably never be able to reach.

Coaching me to be realistic that gait trainers, and adaptive assisted devices would be a waste of time and energy because he lacked potential to succeed.

One therapist even encouraging me to discipline my child at a tender age of three months by not allowing him to be comforted by his mother as punishment for not participating in therapy because that’s all that a severely child could ever do – is learn not to act out as they existed through life and entered into group homes where they were cared for by staff.

Let me tell you, a Debbie Downer has the real potential to emotionally scar a special needs parent.

Our emotions are already so incredibly raw and tender that you add someone who throws nothing but negative things your way and you feel like you are going to sink.

Your only life line is to swim and pray that Positive Polly is out there and that she’ll throw you life-jacket back to shore.

I started to view Debbie Downers as hope killers and dream squelchers.

I once had the guts to actually confront a Debbie Downer to ask them why they felt this was a successful and appropriate approach when dealing with special needs families, and the response was that they didn’t want parents to get their hopes up so it was better to give them the worst case scenario all of the time and have them be pleasantly surprised if their child surpassed the prediction.

And these feelings filter down to our children.

Debbie Downers may not even recognize that our children can feel this negative energy that someone doesn’t believe in their potential.

And you are dealing with children that need every ounce of positive feedback they can find in their lives.

And it’s not just the medical community or therapists.

This can also happen with family members or friends.

You can hear things like “You are just babying him.”

She’ll always be disabled so why try?

Friends throw their two cents in, “How long do you plan to care for him at home?

I bet it’s really hard to have a life and go on date nights, you must be so miserable,” or, “I am sure that this must be a strain on your marriage… have you considered divorce yet?”

So how do we go about handling this situation when we come across someone who is deserving of one of these less than positive titles?

Change Gears: 

Recognize quickly that a Debbie Downer might not be a good long-term match to be a care provider, doctor, or therapist in your child’s life.

Likewise, if your Debbie Downer is a family member or friend, consider placing some intentional distance.

It’s okay to say this person is not the right match for our family’s needs.

There are lots of amazing professionals, friends and family that can be the Positive Polly that you need.

Look for them.

Keep them close, let them be a big part of your special needs tribe.

You will inevitably need them on your hardest of days to fuel your hope and inspire your child to reach new heights.

Give Leeway: 

Sometimes we all can have a bad day.

Sometimes, a Debbie Downer might just be mistaken for a person having a hard day and it may not be necessarily a predictable pattern.

If something happens but it’s out of the norm, try to put it in the back of your mind to make sure this person isn’t habitually throwing negativity your way.

Approach it Head On: 

Be bold.  Speak up and don’t be afraid to let a Debbie Downer know you recognize their approach and it doesn’t work for you.

Invite a polite and respectful conversation and let that Debbie Downer know how their choice of words and philosophy is affecting you and your child.

Sometimes, people are don’t recognize they are doing it, and in their eyes they simply think they are sparing you from having hope.

It could be a good learning tool for them and may put them on the path to eventually becoming a Positive Polly.

Most importantly make a conscious effort to be drawn to those who are truly positive about everything in your day.

You will need to feed off of positive energy on the hardest, most challenging aspects that come along with special needs parenting.

Find those cheerleaders and keep them in your close circle of trust.

Know whom you can confide in who will not offer you any negativity but rather who will put that positive spin on everything.

Those who help you cultivate and grow hope, to remember to have faith, and know that each new tomorrow holds the promise of possibilities.

Thank You for Seeing My Son for Him

We had more doctor visits with Oliver, we were more cautious and aware of any symptoms he had, we even found ourselves with a new set of friends.

It is actually amazing what social networking can provide now-a-days.

I found all the support groups that I am a part of through Facebook.

One day, while scrolling, I even came across this very website that posts my blogs for all of you to read: Firefly.

Most days, I curse Facebook for that weird, “suggestions”, thing they do based off previous research you have done.

It creeped me out to see the shoes I so happened to research on Google the day before.

The only day it did not freak me out, was when they suggested this company who provided products for special needs families.

I had previously done some research on mobility devices for young infants.

Granted I still do not know if Oliver will walk or not, but I wanted to see what was out there.

I found a couple companies here and there, but the next time I logged onto Facebook….BAM! There it was.

In that little suggestion box.

I understand how it may look, me bragging about the same company that gives me the opportunity to blog for them, but they are truly amazing!

I was introduced to not only mobility devices like the Scooot,but other products as well.

Although Oliver does not need some of these products, it was nice to know if he had ever needed it, that it was out there and available.

What amazed me the most, was seeing how connected Firefly is with the families.

On the wall, at any given day, I can go visit their Facebook page and see that we are more than just customers.

There are so many different ways you can connect with them, whether it be through their products, family blogs and updates, or even through their Firefly Community.

I have my eyes set on the Scooot, which will allow Oliver to get around while he builds the strength to one day walk. When he is of age, and we purchase it, we know that we are more than a customer.

It is like a giant family…they know what new possibilities their products can provide and show that with all the amazing pictures we see every day.I am not just bragging about Firefly because I blog for them.

I am bragging because I am truly thankful I found a place that sees my son for him.

For finding a company that knows that for our children there are no limits as to what they can accomplish.

I officially declare this my, “Firefly Appreciation Blog!”

Seeing everyone else’s amazing photos with their Firefly products, I ask; What has Firefly brought to you and your family?

What are you thankful for?

Campaigning for Better Disabled Toilets and Changing Facilities

​Yet again, Special Needs Mums are showing their power to make real change.

In this recent campaign Emma Louise Hodges and Samantha Buck are raising awareness of the real need for improved toilet and changing facilities by challenging people to share photographs of themselves standing bare foot in a toilet.

It might be OK to stand bare feet on your own bathroom floor but the thought of standing bare foot on a public toilet floor would repulse most people.

Yet for many families with disabled children their only option is to change their disabled children on the floor of a public toilet.

Emma Louise and Samantha are calling for more Changing Places facilities.

To find out more about the Changing Places Campaign visit

Firefly’s Space to Change campaign also calls for improved toilet facilities and provides options for venues where cost and available space prevents them from installing a full Changing Place facility.

Visit our Space to Change Campaign for more information.

Support these mums’ #barefootchallenge by sharing your own photos of your bare feet on a bathroom floor to Facebook or Twitter using the hashtag #barefootchallenge.

The Friend Nobody Wants – Raising Children with Disabilties

I recently had to see the doctor.

Not because I was physically ill.

I didn’t even schedule the appointment; my husband did.

I needed to see the doctor, but my friend wouldn’t allow me to.

As I sat waiting for the doctor, my friend crept up through my body.

My palms began to sweat.

My heart began to race…the doctor is going to laugh at me…there is nothing wrong with me…what will I say…how long is this going to take…I have to be back to collect Ethan…did I sign that thing for J?…will the doctor think I am going crazy…I think I’m going crazy…I am so tired…I must remember to ring Temple Street…is it bin day tomorrow?…the doctor will laugh…I know it…God, I’m weak…

“The doctor will see you now, Geraldine”

Later that evening, as I tried to learn more about my friend, I learned that 1 in 9 people will have my friend with them throughout their lifetime.

That floored me.

No one talks about my friend.

I contacted a few other parents in my situation (they all have children like Ethan), although my friend can become anybody’s friend, I wanted to speak with my kin, my safe people.

I asked them straight out if they had my friend too.

I discovered that there are many different versions of my friend; my friend was just a version of somebody else’s friend.

I learned that there are many different treatments which can help ease or help live with my friend .

I learned what works for one person’s friend may not work for my friend – and that is O.K.

I learned there are still some whispers around my friend – I received many private messages answering my question, while many others simple commented openly on the thread.

I learned that was OK too…it is up to me how I choose to deal with my friend; the important thing is that I deal with my friend.

No one wants my friend…hell…I don’t want my friend; I worry all the time, I don’t sleep, I build up a simple task into something so much more, I lose focus, my belly churns at the thought of doing something I don’t normally do or going somewhere I’ve never been or meeting new people, I find it hard to breath…it is endless and relentless.

My friend has a name: anxiety.

And I am not alone.

I am now learning to manage my anxiety, not trying to cope with it, which I had been doing for years.

Special Needs Parenting: Three Years Ago Today

What I didn’t know then was that she would never start eating again – not orally, anyway.

And what I didn’t believe then was that it would be OK.

When Miss Z stopped eating three years ago, it ripped my heart out.

Although it has been one of the most manageable challenges we have faced, it was also one of the most difficult for me to come to terms with.

After all, if you, as a mother, can’t feed your child, you’ve failed, right?

Providing them with food is not only a way to sustain and care for someone, but it is a sign of love.

What do you do when your child simply refuses it?

Previously, Miss Z had been an enthusiastic eater.

She hadn’t progressed beyond purees and the occasional soft food like tiny pasta shapes or little chunks of banana, but I expected that her eating would improve over time.

And in the meantime, I threw myself into making purees every weekend, buying healthy, organic food and searching the Internet and my Annabel Karmel cookbooks for new and creative puree ideas.

Miss Z wolfed most of it down, only occasionally showing her dislike of certain foods, such as avocado.

The height of my feeding achievement was on Pancake Day, when Miss Z ate a whole pancake.

I have a photo of Miss Z and her sister, sitting side by side with their pancakes in front of them, about to tuck in.

Six months later, I had posted the photo of Miss Z with the naso-gastric tube on Facebook.

Miss Z had stopped eating purees and was refusing bottles and her meds.

During that long and exhausting hospital admission, I wracked my brain for reasons why Miss Z had stopped eating.

Had I pushed her too far, introducing chunkier foods?

Or was I feeding her wrong – too fast, or at the wrong time?

Should I have continued breastfeeding for longer?

Was I wrong to mix her medications in a bit of yoghurt to get her to eat them?

And I deployed all sorts of strategies to get Miss Z to start eating again.

Sometimes, she would suck on a bottle if I got it in her mouth when she was asleep.

So, I would wake up every two hours during the night to try to feed her.

I added chocolate powder to her milk to make it taste better.

Every time she opened her mouth, I would be there with a spoonful of puree.

Nothing worked.

Instead, she clenched her jaw and turned her head away.

The times when I did manage to get something in her mouth, she would cough and gag until it came back out.

Giving her medication was the worst.

I would have to hold her down and syringe them down the back of her throat, then hope and pray she wouldn’t choke or vomit them back up.

Three years ago today, I was in an emotionally and physically exhausting place, out of my mind with anxiety about the fact I couldn’t even manage to keep my child hydrated.

And hanging over it all was the dark cloud of regression – that Miss Z was losing the ability to eat, and in fact, the ability to swallow.

I wish I could tell my three-years-ago self that it would all work out in the end, that by January, Miss Z would have a PEG – a feeding tube surgically inserted in her tummy.

And, although three years ago I had thought that a PEG would be a sign of failure, in fact it has been one of our greatest successes.

For me, the PEG (which was later converted to a mickey – a “low profile” type of feeding tube) means that I know she is getting exactly the nutrition she needs to grow and thrive.

It means that there is no fight over taking her meds – she hardly notices when I give them and I know that she’s getting the full dose.

It means I can make sure she gets enough water, especially over the summer months and when she’s sick.

And after three years of tube feeding, I can do it all in my sleep – quite literally, since I’ve done it all in the middle of the night and barely opened my eyes.

For Miss Z, it means no more stress at feeding times, no more being held down and forced to swallow medications.

And it means she is safer, because as her swallow deteriorated, she began aspirating liquids into her lungs and up her nose.

She is a much happier, healthier child today thanks to her feeding tube.

And the tube doesn’t mean that she can never have food orally.

We still try to tempt her with tastes of custard and yoghurt and veggie purees.

She isn’t interested, but that doesn’t mean she won’t want to try them someday.

And in the meantime, she gets smoothies and juices through her tube if we’re all having them and I don’t want her to miss out.

Three years ago, I was facing some difficult times.

I wish I had known then that Miss Z’s feeding problems weren’t because I was a bad mother, or because she was being stubborn, for that matter.

And that a feeding tube wasn’t a sign of failure, but rather the best thing for us.

Special Needs Parenting: Where Did You All Go?

When events come up that involve late nights, you weigh the pros and cons of what that evening of fun will look like the next day at sunrise when your very excited child runs out of bed.

Each glass of wine you drink, is a headache you can’t sleep off and your life changes from free will and fancy free, to diapers and coffee.

Your social life changes as you find friends that also have children, and you discuss diaper consistency, the latest bottles, and the coolest new shows on Disney Channel.

This was the image I had in my mind.

I thought even though I was going to be a parent, I would have a social life. I was so incredibly wrong about what I thought life would look like.

Von came into the world early, and I often thought he was in a hurry to go nowhere.

He stayed in the NICU for weeks.

We measured each poopy diaper to the gram, and counted every single milliliter of milk he drank.

Every single thing he did was put on a chart, and my early weeks of motherhood were of beeping machines, alarms and sleepless nights wondering when he came home.

I felt so lonely then.

I wanted to take him home. I thought if I took him home this could be like I imagined.

I thought I could put him in those tiny little outfits, and cuddle him to sleep while I watched my favorite shows.

I imagined my maternity leave as one of coffee dates with friends as they held him and I could get a needed break.

When Von finally came home, he was still so sick that we didn’t go anywhere.

The friends I thought I had disappeared, and I wasn’t sure why they left.

I’ve itemized in my brain all the reasons a friendship that spanned years would suddenly poof after the diagnosis I received for Von.

I wondered why all the people we had in our lives scattered.

I knew when we had children, relationships would change.

However, I didn’t realize when you have a sick child, it was sort of like wearing a scarlett letter in the 1700s.

We were the family of the sick kid.

The whispers and I’m assuming the assumptions and blaming of what I must have done wrong during pregnancy were likely being discussed.

In fact, a woman I just met told me Von would not be so sick had I just not eaten all those GMO’s during pregnancy.

Or it was likely the medication I took while I was pregnant I had friends suggest.

In truth, we’ve never found the answer, and no matter what I hear about why he could be sick it changes nothing.

I thought that if friends would disappear that at least my husband and I could count on our family.

Unfortunately, that assumption was again wrong.

Family struggled to understand the magnitude of his illness, and I believe many still have no idea how hard we fight.

Others just don’t care to check in on Von’s development.

Von wasn’t doing what their kids were doing, and so hanging out with them just wasn’t a priority.

It was hard to arrange playdates when I had to constantly remind them we couldn’t be around other sick children. Von caught illness from other kids and didn’t fight them the same.

We finally had to really clamp down when he got whooping cough at Thanksgiving.

I don’t blame anyone for his exposure, but it made me realize that Von is so fragile that even events that are happy for most are stressful for our family.

We’ve never attended our extended family’s Christmas party because children that attend are often sick.

Our holidays are quiet, and often the three of us, or my parents and sibling.

It’s not at all how I imagined life would be.

I’m trying hard to find joy in the pain.

It’s been incredibly difficult.

Our lives by comparison to the others are so different.

How we celebrate our holidays are different.

As we come in to the season with Halloween, then Thanksgiving and Christmas, I have a tightness in my chest as I worry about the germs and what it will do to Von.

I feel sad that Von can’t enjoy the very basic things normal children do, and I struggle to find ways to make this season joyful for him.

He will hopefully go trick or treating but only to a few homes as there are far too many germs this time of year and the wind in October here is hard on his asthma.

We will go to Thanksgiving but only for a short time as he still struggles around large groups, and our Christmas this year will hopefully be the first time we can attend a larger family function.

It’s so hard knowing that we have to rely on so many other people to keep their kids home if they are sick, then to risk exposing Von to serious illness.

This year I’m putting my trust in God and hoping he will keep Von well and allow him to enjoy the season instead of fear it.

The holidays are a magical time for most, and yet they scare me to pieces.

I pray for a day when our lives are less isolated, and when people will no longer fear Von’s disease.

I pray for a society that is not scared of embracing children who are fighting serious illness.

We get a lot of praise online and through social media.

However, in our day to day lives most of us are very alone, and most of us really need friends to help us get out of this darkness.

If you are reading this and you have a friend that has a sick child, don’t be afraid to say the wrong things.

Just reaching out and saying something is better than saying nothing at all.

Irish Retailer Dunnes Stores to Roll Out GoTo Shop Trolley

Dunnes Stores’ decision to roll out the GoTo Trolley is a direct response to a request from special needs mum, Gina Grant.

Gina’s son Francis has mitochondrial disease and is unable to walk or move.

Gina, like many other special needs families, struggled to do her weekly shopping having to either put Francis in the basket section of the trolley which he found very upsetting or push his wheelchair and carry several baskets.

Shopping had become so stressful that she approached her local supermarket manager and asked him to investigate disabled trolleys for children.

The store manager at Dunnes Stores in Letterkenny, discovered the GoTo Shop Trolley, which provides the necessary support for children like Francis because it has a five point harness, side supports and head support.

One was quickly ordered for the Grant family and was in store within a matter of weeks.

Following the success of the GoTo Shop trolley in it’s Letterkenny branch, Dunnes Stores has just placed an order for an additional 230 trolleys to roll out across its stores in the Republic of Ireland.


To support the campaign download and hand in the leaflets here to your local supermarket.

Newlife: Free Equipment Now Available

The Newlifeable scheme run by Newlife Charity has quality refurbished specialist equipment ready and waiting to be delivered to UK children with disabilities or terminal illness.

Newlifeable launched in January 2014, offering a large selection of quality, clinically refurbished and certified equipment, all available through a grant for ‘priority delivery’ at no cost.

The equipment is available for all children with a disability up to their nineteenth birthday.

Equipment includes:  

• Specialist seating

• Manual wheelchairs

• Buggies

• Walking frames

• Assisted living aids

To view the current range of equipment and FAQ’s regarding this service, please visit Newlifeable’s website.

If you cannot access the internet to view the range and know the name or type of equipment you are seeking, you can also call Newlife on 0800 902 0095 (free from UK mobiles & landlines).

Newlife welcomes contact direct from families.

They also want to hear from professionals if they know a child in need of specialist equipment – especially when they would probably not be able to get provision through the local statutory services.

Newlife can deliver anywhere in the UK, including Scotland, Wales and Northern Ireland.

You must also include the website reference for each piece of equipment you are applying for.

Newlife is committed to ensuring that children and young adults with disabilities or terminal illness are able to get the right equipment at the right time.

Children like Archie have received essential equipment through Newlifeable.

The mum to two-year-old Archie, who has Quadriplegic Cerebral Palsy, added:

“It’s absolutely amazing. Archie doesn’t qualify for wheelchair services for another few months, so having the opportunity to get the right equipment when he really needs it has been great.”

To register your interest in any of these items, just call the Nurse Helpline on 0800 902 0095, Monday to Friday from 9.30am – 5.00pm (free from UK mobiles & landlines).