Special Needs Campaigns: Supporting Grace’s Campaign

On many occasions, a flash of a blue disabled parking badge, the opening of a car boot to show a wheelchair or the lifting out of a piece of medical equipment is enough to send the doubters on their way.

But for people who have disability or medical condition that is not visible life can be that bit more difficult.

They are often stared at. Openly challenged by members of the public.

And even have spiteful comments directed at them.

One 10-year-old girl was tired of being made to feel bad because her condition is not a visible disability so she has started her own campaign, Grace’s Sign.

Grace’s Sign aims to raise awareness that people who do not have a visible disability may still need to use an accessible toilet.

Grace Warnock is from Scotland and has Crohn’s disease.

Grace explains that,

‘“There are children and adults with severe Crohn’s who have had to have surgery and they need to change their stoma bags when out.

Doing this in a room that has a toilet and sink means that they will have the privacy of one room.

Why should you be made to feel bad just because you need a little more space or you need access to clean water?

No one should be stared at or receive hurtful comments doing something very natural just because your illness can’t be seen.

Grace has designed a new door sign to help show that it is not just children and adults with an obvious physical disability who need the use of an accessible toilet.

Despite the fact that Grace’s own condition is in remission she forging on with her campaign to make a difference for people living with a disability that is not obvious.

Grace has met with the Scottish Parliament, Independent Living in Scotland and the Scottish Disability Equality Forum to help raise awareness of her campaign, she is now calling on those responsible for signage on public toilets to incorporate her sign and help challenge raise awareness of disabilities and medical conditions that are not visible.

Firefly is supporting Grace in her campaign, you can too by liking and sharing her Facebook Page.

How to Make a Fidget: DIY Sensory Disorder Toys

It shouldn’t have come as a surprise when, a few days ago, my children emerged from the kitchen, with handmade fidgets, configured out of animal-balloons (I’ll get to that), and a bit of water, all tied into a knot.

“Mommy, we made calm-down fidgets!” they exclaimed, pride evident in their voice.

I was pretty impressed.

What a smart idea!

As a therapist with a limited budget, working in the school system, I am always looking for do-it-yourself sensory items.

I have some already made to bring in for the start of the upcoming school year!


– Pack of balloons.

– Your filler of choice e.g. water, rice, play-doh or beads (or anything else you think will be engaging and safe for your child).


– Add your filler into a balloon using a funnel until approximately 1/3 to 1/2 way full. Knot it together.

– Take a second balloon and cut off the neck. Wrap the first balloon in the skin of the second, this will strengthen the surface making it harder to pierce. You can repeat this with a third balloon for extra strength.

– Repeat the entire process with two more balloons and ‘double-wrap’ them too.

– Tie all balloons together.

You’ve got it!

Just don’t poke a hole in it.

Remember that the fidget could burst if bitten or damaged so it’s important to be careful and only use a safe filler.

My kids loved being able to fidget with this, moving between the balloons, and shifting water around from side to side within each balloon.

Have a wonderful day!

Lauren (and the kids- Shayna, Yosef, and Lianna)

Why You MUST Accept Help – Raising Children with Disabilities

For all of my flaws I think one of my most troublesome is pride.

Much as I want everyone to think I can cope and that I am super-mum, I also want people to see that yes this is hard but not viewing me as a victim.

There is no balance – I want to be hailed as amazing for what I do, but I want to be empathised with (NOT pitied!!) but you know what?

I also want to be just like everyone else – I don’t always want our situation to stand out as different.

You can’t win.

So there you go.

Aspire to be like me, wish you weren’t me, and see me as you!

You see the last thing I want is anyone at all to view my caring for Amy as a burden.

I am absolutely honoured and privileged that I get to play such a huge part in my little girl’s life.

Sadly for many families like ours – a lot of our time together is robbed from us by appointments, therapies, prescriptions, phone calls, admin, tube feeding commitments etc.

We often spread ourselves so thinly that we operate on permanent burn-out mode.

This week I did a big thing.

A few months ago our team of specialists helped us get respite.

We were awarded 5 hours at a local respite centre.

It is a truly amazing place, it has a wheelchair swing, adapted equipment everywhere, themed bedrooms, a gorgeous sensory room – everything.

I would have us all move in there in an instant if I could, it’s perfect, as are the staff.

When I pick Amy up she is always in such a lovely mood – she seems genuinely delighted to see me, and me her!

I know she is in great hands there and I get very excited to see her because whilst I need that time – I also miss her sorely when she isn’t there.

We have been having respite for a couple of months now.

But this week I realised – 5 hours is simply not enough.

When respite was first mentioned it was met by feelings of horror that they thought I couldn’t cope.

But after careful consideration I realised that this would be best for all of us.

I then imagined coffees with friends, reading books, all those sorts of things – things I used to do – things I know other people still do, things I grieve and used to take for granted.

But the reality is that an hour of that time is taken up driving to and from the respite centre and the rest was collecting prescriptions, drawing up meds, changing bedding and all sorts of unpleasant but highly necessary tasks.

So the big thing I did?

I asked for help!

I explained how I wasn’t coping and how constantly rushed I was.

I explained my bad back, I explained that genuinely my personal hygiene and mental health was suffering as a result of the amount of responsibilities I now have.

So now next week we will have a couple more hours and they are going to review our current services and hopefully provide some extra support.

You know what else I realised this week?

When Amy is in respite she has a whole team of people dedicated to her well-being.

Not just me.

I am that team!

I am that person pressing buttons on toys because she can’t, I’m the one singing, I’m the one administering meds, I am the one doing nappy changes, physio, speech and language therapy, dealing with tantrums, cuddling etc.

Not only am I not a whole team of people, there is so much cool stuff there – there are bubble tubes, laser lights, projectors, other children, more toys than you can imagine!

When offered to be child-free for an hour or two inside I’m screaming “Oh, yes please!” and I’m internally planning about 100 activities I would love to do (firstly sleep. Always sleep. Then a bath, then of course all the tv shows I have missed over 18 months, eating snacks, reading books, writing blogs, texting friends, sitting in the garden etc).

But what comes out?

Usually: “No thanks, don’t worry, I’d rather us all hang out together.”

I worry that I am becoming a nuisance, or I worry that I am betraying my child by needing that time away.

Well recently I have managed to muster up: “Are you sure? That would be great,” followed closely by a huge wave of thoughts about how selfish I am and what a horrible mother I have become.

I try to banish these thoughts as part of my recent interest in mindfulness.

I am trying to learn that in order to care for Amy and be the mum I need to be that I need to look after myself.

I know that I cannot operate on burn-out mode and I have seen a really pathetic, downbeat, defeatist version of myself recently that I would really like to see the back of.

For me recently the overnight tube feeds have started to take their toll.

You know how people get a sign for their house like “rose cottage” or “sunshine terrace”?

Well, here we are, eyebag central.

We are tube-town nook, backache boulevard; you get the picture.

My parents and Phil’s mum see my exhaustion more than most others.

They know how when Amy goes to bed we are too tired to enjoy hobbies.

They know I plough on 110% mode with my necessary chores, feeling tremendous guilt that Amy is not getting the fun, relaxed, playful mummy she deserves.

So now, I will accept those offers.

I realise now – it is helping Amy socialise with others, will allow her new experiences, will help her learn some independence and when she comes home to me I will have the energy needed to be who I want to be – for her, for me, and for Phil.

So, the moral of the story?

I want to be you, I don’t want to be you, I am just like you.

If you need help – ask for it.

If you are offered help – take it.

Look after yourself.

Not looking after yourself will have a knock-on effect on everyone important to you.

Your mental health could suffer; your loved ones will suffer.

Life is far too short to run on empty.

I have not yet had my few hours extra respite, but knowing they’re there helps me plan my week, feel positive about the future, and helps me set achievable goals for that time.

I know I will get chores done – but I will also get to be me for a while too.

Disability and a Throwaway Culture

Perfectly good clothing and even toys often get tossed into the trash can when they are outgrown by the children who once loved them.

When an appliance develops a minor glitch, rather than calling a repairman to fix it, off to the dump it goes.

So many other things in our society are also disposable.

Most people, myself included, never think twice about using disposable diapers and dispsable wipes.

Who’d rather spend their time getting down and dirty wiping and diapering little poopy butts with washable cloth diapers and cloth wipes?

We use mops with disposable “wipes” on them to clean our floors with and we wipe down our counter tops and toilet bowls with disposable disinfectant wipes!

We eat off of paper plates, drink out of paper cups, and eat our food with plastic forks and spoons! Even contact lenses are disposable these days!

Now don’t get me wrong, I really don’t think that throwing things away when they’re broken and using disposable items to make our lives easier are all bad things to do.

However, when that throwaway attitude begins to affect how the general population feels about certain types of people, it can become pure evil!

The belief by some that human lives are also disposable is beyond frightening to me.

I was recently devastated when a close friend of mine suggested that I place my daughter, Bethany, into an institution for the disabled so I could have a better life!!!

I was flabbergasted that she would think that way about my beloved and precious daughter.

Her callous attitude made it’s despicable debut when I broke down crying one day while she was visiting.

Bethany’s behavior had been quite upsetting that day.

To my bewildered astonishment, rather than supporting and encouraging me to continue in my attempts to understand and eliminate Bethany’s behavior triggers, she told me to toss her out like a bag of trash so that I could have a better life!!

I cannot find the words to express just how heartbroken and crushed I was by this friend’s cold and heartless statement.

If you are the parent of a child with disabilities who have placed their child in a living arrangement outside the family home please don’t take my reaction to my friend’s response the wrong way; I personally know several children who are thriving and much happier living away from the family home.

I’m fairly certain that the majority of parents who place their child outside of the home did not come to that decision lightly or do so because they felt that caring for their child was an inconvenience.

Sometimes good and loving parents have no other options and for the welfare of the child, parents make the agonizing decision to place their child into a living situation outside the family home.

Sometimes parents make such a decision for the safety of their child or the for the safety of other family members. Sometimes when our disabled children become young adults, they want to experience growing up, leaving home, and living as independently as possible just like everybody else their age does.

And of course, as parents of children with special needs grow older we need to get them ready them for a life without us and that may involve transitioning them into other housing options.

If you are the loving parent of a child with disabilities who has made the very difficult decision to place your child into a living situation outside yor family home.

Please do not be offended by my words.

My criticism is not meant for you.

My criticism lies wth the horrifying attitude that if a child’s disability causes an inconvenience, is annoying, or makes life difficult in any way then by all means just get rid of him or her!

This growing and disturbingly inhumane belief that a person with disabilities is as disposable as a broken toy or a dirty diaper makes my blood boil and also terrifies me.

Huge Breakthrough for our Disability Trolley Campaign – Tesco is Onboard!

The news is a huge boost for the Firefly’s GoTo Shop Campaign, as it aims to make shopping easier for parents of children with disabilities.

Although many supermarkets have disability trolleys, they are often not supportive or secure enough for children.

So it is fantastic news that Tesco is taking steps to make shopping more accessible and convenient for families.

The GoTo Shop Campaign’s goal is to get at least one in #EverySupermarket in the UK and Ireland.

Claire Smyth, the Firefly Garden’s Community Manager, said:

“This is fantastic news. All the parents involved in raising awareness about this campaign can be very proud of themselves and what they have achieved.

There’s still a long way to go in this campaign and we need everyone’s support.”

You can support GoTo Shop Campaign when you download the campaign leaflet and hand it in to your local store.


Why I’m Campaigning for Better Toilet Facilities!

Same as it is for everyone else we were thrown into the maelstrom of having a new little person to look after with all the sleepless nights and feeds as everyone would expect.

As the months went by though there was a dawning realisation that not everything was going to plan with our little girl, she wasn’t hitting her milestones, was unable to sit and so the inevitable referral to a paediatrician was made, and we were told that she has global development delay and that no-one could predict her prognosis.

So, now to the present time, my daughter is now 5.

She remains non-verbal and she is still unable to weight-bear.

But she shines her light wherever she goes.

I wouldn’t change my daughter for the world but a while ago I realised that the world needs to change for my daughter.

Which is why, I find myself here, writing these words.

A few months ago I started campaigning to see if I could improve disabled toilet facilities.

You see my daughter is unable to sit on a loo, and also unable to tell us when she needs to go, so she is still in nappies.

And nowadays she is beginning to outgrow the baby change facilities that I’ve relied on for the last few years.

And so now, more and more often I’m having to change her on public toilet floors when we’re out and about.

Now I don’t want this for my child, and I would think nobody wants this for their child.

Let’s face it, our children are more likely to have lowered immune systems and/or invasive equipment such as feeding tubes or catheters so the last place they should be is on a toilet floor…

I live in the UK so I wrote to my local MP, who in turn wrote to Government ministers, asking that planning permission laws be changed and that Changing Places toilets (with changing benches and hoists and space for carers) should be made compulsory in new public buildings.

I set up an online petition, which is still available to sign, I have had my views broadcast on local radio stations and I’ve appeared on our local news station. I’m beginning to see results, currently on a local level.

My local council has agreed to try and tighten up planning permission laws so that we should get more brand new Changing Places throughout the county.

But they’ve also decided to go further and are currently looking at 20 existing public toilet facilities to see which ones would be appropriate to turn into a Changing Places loo, as well as looking at 7 local developments that are in the pipeline to see if a Changing Places toilet can be incorporated into their plans.

I nearly did a song and dance when I heard of all of this.

As for UK wide, I’m still waiting on replies from those Government ministers, but if they fail me I’m planning to take on each and every council, because if one can do it so can all the rest.

Here’s to making the world a better and brighter place for all of our children.

For more information about Changing Places visit the website here.

If you live in the UK you can sign Lorna’s here.

To find out more about the Firefly Garden campaign Space to Change to improve toilet facilities visit our campaign pages.

Special Needs Parenting: Trusting Someone Else To Care

It was truly terrifying.

Since Sam was born, I’ve been there.

I’ve held him through as many seizures as humanly possible, for blood tests, lumbar punctures, bumps and scrapes when he’s had a seizure and bitten through his lip or banged his head/knee/arm during the throes of one of the wretched things.

While not his sole parent and sole carer, due to work etc it has more often than not fallen to me to be nurse, therapist, dietitian, and advocate.

So, handing over the reins to someone else was… difficult.

And his wonderful carer totally got it.

I already like this lady and the other lady who comes to care for him.

We’ve only met once, yesterday afternoon, when they popped over to say, hi, introduce themselves and find out a bit about this special little man they’re going to be looking after while Mum and Dad are at work.

Sam likes them too.

They have a warmth about them, and a manner that was so gentle that even Sam couldn’t resist giving a little smile.

For parents of neuro-typical kids, it’s tough letting your child go with someone else, think the first day at school, or the first time they’ve gone out with a friends family….

But for us, the parents of non-neurotypical kids, there’s the added need to explain ALL about our kids.

Their needs, seizures, movements, how they communicate, how they can let you know that they like/dislike something/are in pain.

It’s scary leaving someone alone with our child knowing that the child in question may well have a severe seizure and stop breathing, or may choke on vomit during/after a seizure and require emergency medical attention.

Although we *know* these are trained carers and will take everything he can throw at them in their stride, it is hard to relinquish that caring role and allow someone else to take the strain, albeit just for a few hours.

I find myself hanging around, not quite ready to leave my boy…

I’ve almost become dependent on HIM, not the other way round!

However, Daddy is now home and all is well…

Sam behaved like a gentleman and didn’t have any major seizures, and by all accounts has had a fantastic morning. I’m thrilled that we’ve got this support, allowing us to be parents not just carers.

We get some financial help with covering the cost of the service from social care through direct payments but they are nowhere near sufficient to meet the costs fully.

The sad thing for us is that as Sam is only 4, our direct payments are deemed to be for carers respite, NOT childcare.

And yet, our boy cannot access ordinary, mainstream childcare and is too young for special needs holiday clubs.

For us, it’s a price worth paying, but many others don’t have that choice… surely its about time childcare for SN children was given the priority it so desperately needs?

Sam and I certainly think it is x

The Advantages of Homeschooling Special Needs Students

Home computers were relatively new in 2000.

There was no Facebook, Skype, or any other communication systems available back then that would have made teaching my children back at home much easier, while Bethany and I lived in the hospital for two months, but we did make use of email and of course the phone.

We are living proof that a family can continue to homeschool long distance during a medical crisis.

After Bethany was released from the hospital she had to learn how to sit up, walk, talk and use her arms and hands all over again.

Thankfully, she was eligible for in-home physical, occupational, and speech therapy.

When it became obvious that Bethany would benefit from learning sign language, she had lessons at home for that too.

In fact, our whole family did!

Luckily for me, Bethany’s sign language teacher was a special education preschool teacher as well!

She supported our homeschool endeavors and was more than willing to give me some hints and tips on how to teach Bethany preschool academic skills!

However, when Bethany was about six years old I began to feel inadequate as her teacher.

I had been able to successfully teach her many skills and concepts, including teaching her all the letter sounds.

But try as hard as I might, I was not able to teach her how to blend the sounds together into actual words.

I felt like I was failing her as a teacher and began to entertain the idea that perhaps being taught by a trained and educated special education teacher would be better for Bethany.

I was wrong.

Although Bethany loved her first year attending a special education class at our local public school, by February of her second year, she began having many more seizures than usual.

She nearly stopped eating altogether and lost so much weight that she became overdosed on her medications.

She was so ill that we had to take her out of school until she fully recovered, which didn’t happen until the next school year.

We tried school again.

This time Bethany was in a different classroom.

She had to walk through a long, noisy and chaotic corridor and climb a set of stairs to get to her new classroom.

It was right around this time in her life that Bethany began to get violent and have behavior problems.

By February of her second school year, we found ourselves facing the same health issues Bethany began having lots of seizures again.

She became anorexic and overdosed on her medication again.

We now believe that the stress of attending such a big, noisy, and chaotic school was too much for her.

We withdrew her from school again.

This time we kept her home for about three years.

I once again began to feel inadequate as her teacher so we decided to look for a more suitable educational placement for Bethany.

We discovered a small, cozy, private special education school which seemed like the ideal and perfect placement for Bethany.

We decided to give it a shot.

Bethany made it through a year and a half at the private school before she began having so many seizures that it became nearly impossible and definitely dangerous to continue sending her to there.

At this point, I resigned myself to the fact that my sweet, precious daughter needed to be at home full-time and all attempts of trying to send Bethany to school ceased forever!

We did try a short time of having in-home instruction with a teacher from the public school, but Bethany’s seizure disorder was so chaotic that it too, soon became pointless.

You can’t schedule seizures to occur only after school hours!

I finally learned that I would have to be Bethany’s teacher and that we’d have to schedule her learning experiences around her seizures disorder.

So we took advantage of her good days and let her rest on her bad days and that’s what we are still doing to this day!

Advantages of Homeschooling a Special Needs Student:

• The parent knows and understands their child’s needs better than anyone else.

• The parent can create a truly individualized educational program for their special child.

• Homeschooling provides the child with 1:1 instruction.

• Homeschooling eliminates many stressors from special needs students’ lives.

• Homeschooling offers the flexibility to schedule lessons for when your child is feeling best able to learn.

• Homeschooling offers the flexibility to teach for as long or as short of a time as your child is able to attend.

• Homeschooling offers the flexibility to schedule school time around medical appointments.

• Homeschooling offers a safer environment, especially if your child depends on special medical equipment.

• Homeschooling offers a safer environment for medically fragile children who may be more susceptible to getting dangerously ill from common childhood germs and bacteria.

While I certainly have nothing against sending any child, those with special needs included, to public or private schools, I have learned that homeschooling my special needs daughter has been the better choice for her and it may be a good one for your child too.

“How Do You Cope? I Know I Couldn’t.”

Mostly from well-meaning friends, some of my son’s therapists or even strangers who see how much of a handful my son and how hectic life can be.

Long days, usually starting at 3 am, quite often even earlier.

Even longer nights, where sleep is nonexistent, constantly waking to comfort my son who’s distressed for no obvious reason.

Meltdowns that can last all day, kicking, scratching and biting.

Appointments coming out of our ears.

Constantly having to fight for things he needs.

Constantly fearing my son choking (he has a poor/delayed swallow).

Constantly on the phone chasing up things such as equipment, tests or appointments.

I could probably write a book of all the, ‘non normal’, stuff we have to do just to get through the day but to save sounding like I’m moaning, I’ll just leave that there.

The thing is though, I never really quite know how to truthfully reply to that question.

I mean, I never really think about how I cope… I just try to get on with things.

Don’t get me wrong, I’ve had (and still have) many, many, days where all I’ve done is cried, stomped my feet, felt like a failure as a mother and wondered, “Why me? Why us? Why my son?

Quite often, I sit down at the end of a busy day and find myself thinking, “Wow, how did we fit all that in one day?!” “How haven’t I gone crazy yet??

But when it comes to it, the truth is, I cope because I feel I have to.

If I didn’t, my son would have nobody to fight his corner for him…

And that would make things a whole lot harder for him.

He needs me.

He can’t speak, so I am his voice, I speak up for him.

I am his home therapist, therapy needs to carry on at home too, right?

I am his pharmacist, making up meds and administering them in the mornings.

I am his secretary, answering phones, opening and replying to letters day in day out.

I am his carer.

(Somebody needs to tell someone, somewhere, that carers need caring for too!)

But most importantly, I am his mum and I won’t stop at anything to get my boy everything he needs.

When people ask me how I cope it sometimes feels as if they think it’s, ‘too much‘, then I start to second guess myself..

– Can I really do this?

– Yes I can, I have too. Am I doing everything I can?

– I’m doing the best I can. Is it all enough?

– I hope so.

I hope, one day, all of our hard work will pay off and we’ll see some progress.

I’ll admit, caring for my son is without a doubt the hardest, most physically and mentally draining thing I have ever had to do.

Every day is so, ‘full on’, and non stop until bed time (which doesn’t last long!).

Some days we can go all day without even so much as a smile from him, but when we do get one, even just a tiny smile before bed, it makes it all worth it.

So, yeah, basically the short answer – to the question, ‘How do you cope?’ – I do it for my boy, he needs me.