What We Take Away From a Break from School

School holidays can be a tough time for many kids, and especially ones like ours.

We have three beautiful, delightful and cheeky kids – two of whom happen to be autistic.

And whereas one cries the day before returning to school, the other one cries in the few days after he stops going.

It’s when David realises it’s not just a weekend and he’s not returning to school anytime soon.

When we first realised this, we thought that the best way to help David was to create a routine at home or allow him to choose his activities.

However, without any prompting, David would spend all the days of his holidays sat in the living room on one of the many sensory cushions, playing continuously with his iPad.

If we thought this made him happy then that’s what we would do.

But I think we have come to realize that this isn’t his preferred way to spend all the days of his holidays – it’s just how he copes without the routine and interaction of school.

Now we have plans for half-terms.  They don’t have to be full-on all the time, although sometimes they are.

Mostly they just need to have some activities out of the house.

We go for walks with the dogs most days but will include days out to amusement parks, visitor attractions and even going out to lunch. Many of the things other families may do.

Generally, these involve more planning.

We have to consider carefully what travel arrangements and environments will be safe for David and we have to make sure we can take lunch with us as there is every possibility he won’t eat whatever is available there.

But we manage… mostly.

I think what we’ve learned over the years of breaks from school, is that having a routine for David doesn’t necessarily mean doing exactly the same things every day.

But it does mean having some consistency in when activities happen (eg breakfast, going out, dinner, bedtime) and having activities to do.

It’s been a hard lesson learned.

Some weeks off would end in meltdowns when we thought nothing stressful had happened because we had stayed at home….

Of course, it was doing nothing at all and staying home that caused the meltdowns.

We’ve figured out some things but still find new challenges on our days out or times away, but I’m glad we’re managing to enjoy them as a family.

Finding Joy in the Mayhem

As any parent of children with special needs knows, every day can bring new challenges and struggles, and there are some days when you consider the fact that you have managed to do the bare minimum a win.

No day is the same, and just when you think you’ve managed to get it all under control, all Hell breaks loose, and a new issue pops up; a massive meltdown at school, a cold for our little guy with chronic lung disease which always puts us on high alert.

Trying to find a specialist that takes our insurance or a mistake on a prescription that results in a series of phone calls that can take up most of the morning.

It would be so easy to fall into a rabbit hole of gloom over the hand that life has dealt, but that’s not how I roll.

I choose not to dwell on the negatives and wallow in self-pity- that does nothing for me, and it certainly does nothing for my kids.

I’m not minimizing the pain and emotion during times of real crisis; I’m speaking of the everyday, routine moments of life that can be extra difficult for those of us with children who have special needs.

Some days are impossibly hard and emotionally draining, but there is always something to be thankful for.

I’ve always been one of those “glass is half-full,” optimistic types.

Don’t get me wrong- I don’t walk around with a smile plastered on my face all the time like everything is all sunshine, rainbows, and unicorns.

It definitely is not easy, but even in the midst of chaos, I can usually find some things to find a little joy from.

A good report from school for my children with challenging behaviors.

No bedtime struggle from my littlest who has bedtime avoidance down to an artform.

Seeing the siblings who quarrel the most sitting side by side quietly, or even playing a video game- together.

No one complaining about what’s for dinner.

Getting stuff checked off a “to-do” list- even if some of the things are tedious tasks.

Getting to drink a whole cup of coffee while it’s still hot.

Remembering the chocolate stashed in the back of the freezer that the kids know nothing about.

A kind word or comment from a friend on social media.

My always on the go eight-year-old sitting still for some extra cuddles.

Watching how focused my daughter is on her workbooks.

These instances and countless others are constant reminders that even though life can be overwhelming and hectic, there is joy to be found in the most ordinary of moments.

‘It’s Not Your Fault…’ A Letter To The Mother Of Our Special Needs Child

To the mother of our special needs child, my wife…

It’s not your fault

It’s not your fault that our child is Autistic.  It’s not your fault that he has Learning Difficulties and struggles to communicate effectively.  It’s not your fault that James has Epilepsy.

None of these things are your fault, or mine; they are no-one’s fault.  James is who he was born to be, who he was meant to be, with all of the challenges that that brings along with all of the joys that we experience together with him as well.

For there to be fault there would need to be failure, inadequacy, lack… there are none of those things regarding James, not from you, me, or anyone else.

James has a mix of our genes, and those have formed him into who he is, but to be blamed for any differences that this blend has created would be as absurd as finding fault in parents whose child has red hair, or is shorter, or can’t sing in tune, or is left handed…

James’ additional needs are not your fault, but they are what make you shine!

We didn’t expect that our child would have additional needs, or that these would be added to over the years, but the way you fight for him, care for him, love him unconditionally even when that might seem hard, does you great credit.

You fight for him…

When things aren’t happening quickly enough to give James the support that he needs, you are filled with a strong will to champion his corner, to call out poor performance in professionals, to challenge why things are taking so long.

You are better than me at asking the hard questions, putting people on the spot and forcing them to act, bringing about positive change for James and our family.

You care for him…

There is a lot of care that James needs, care that would be much less for a typical 16-year-old.

Whether it’s the whole range of personal care that needs doing, or just sitting with James when he’s had an epileptic seizure to make sure that he is safe and recovering, or just keeping him company when he wants it, you are there for him.

Whatever he needs, you are there…  and you being there means that sometimes I can be away with work, which really helps but I know it comes at a cost as you are then 24/7 James’ sole carer at those times, even though you never complain.

You love him unconditionally…

Even when yet again you are clearing up what you would not expect to have to for a 16-year-old.

Even when James refuses to cooperate, doing the exact opposite of what you have calmly asked him to do.

Even when those rarest of rare things, a break from being carer to enjoy a treat, or a much-needed holiday, gets cancelled at the last minute because James cannot cope or is unwell.

You love him because of who he is, not in spite of who he is.

You juggle like a circus performer

Caring for James, keeping the household going, managing to hold down your job, volunteering at church in the children’s team, being wife to me, mum to Phoebe as well as James, daughter and daughter-in-law, sister, friend and more…

It’s amazing how you manage to keep everything going without dropping something…

I’m very grateful for all that you do and very proud of you!

So, when things are tough, when it’s hard to see the future clearly, when that future looks difficult and there seems no end to the demands on you; when you worry about the future for James and what that will look like, please remember this…

It’s not your fault, I’m fighting for our family alongside you, I care for you as much as you care for James, that I love you unconditionally too, and that when you are juggling and feel like you’re going to drop a ball…

You can toss it to me and I’ll catch it.

We’re in this together, for life and all that it can throw at us, and there is no-one I would be rather facing life with than you.

Your loving husband and friend,

Mark x

Compassion For All

We all fight for compassion for our differently-abled children.

We advocate. We educate. We ask. We suggest. We model. We demand.

But, after all this work, do we give ourselves the same compassion we so desperately desire for our kids?

How often do we show tremendous kindness and patience to others but never extend that same grace to ourselves?

I, for one, am much better about exercising these traits with others than I am at extending them to myself.

I discovered this after a recent counseling visit (we all need a little self-care and introspective work facilitated by a professional every so often-it’s good for our souls) the therapist suggested a book, “The Gifts of Imperfection.”

What in the world?! I am totally not a perfectionist I thought to myself.

You can examine my bathrooms, my car,  and last but not least by desk to come to that conclusion with me.

However, perfectionism is about more than just our external habits.

It has just as much to do with our internal dialogue.

How often I let a mistake of a coworker go by without a hasty judgment but ridicule myself for an errand I forgot to run.

Or, I will offer a patient and understanding ear to a family struggling to meet the needs of their child.

Yet, when I say the wrong thing in a friendship I ruminate over the conversation for days on end berating myself  for a few misplaced words.

I might punish myself through repeated self criticism for how I failed to attend a school function or listen to my child earnestly telling me about his weather project.

Guys, we all need grace and compassion, kindness and patience.

I find that when I treat myself in such a way that practice extends to others in a more authentic way.

Though our children may have visible differences that demand such treatment we, too, require a tender word, a kind embrace from ourselves and to ourselves.

Self-kindness is really a thing.

What would it look like if you practiced compassion with yourself today? It might be that second cup of coffee instead of dusting the coffee table overflowing with baby paraphernalia.

It might be taking myself to a movie or going for a bike ride instead of making a well-balanced dinner.

Whatever it is, treat yourself with kindness today. I know you can do it! After all, I see you practice this each day with your child.

Give yourself the same grace! You are worth it!

We’re All In This Together – The Continuous Learning Curve

Over the last five years I feel I have really encountered a lot. Special needs parents will have their perceptions of the world shifted significantly.

They will have probably several profound life altering moments in a short space of time.

They’ll witness a lot – things that before having their child they never could have anticipated.

They will see beauty in the smallest moments and compile them all together so that they have something positive to reflect on when times become overwhelming.

They will most likely at some stage wonder where their place is in the world. Our normal isn’t like most people’s normal.

We find ourselves having to translate our conversations to others and we can see them withdraw and become awkward at times.

The funny thing is that our normal… somewhere.. Is the same normal as someone else’s.

For every few thousand lives that can’t relate to ours – there are other people speaking our language and coasting along with the ebbs and flows of special needs family life.

One of the main recurring phrases that comes to mind is “we are all in this together” and it’s so true.

Recently my daughter turned 5.

Birthdays are a real time of rumination and reflection for me.

I find myself simultaneously in awe of how far we have come; but equally grieving hard at what we have had to overcome and the challenges we have faced along the way.

There is a deep and intense pride and relief that she is still here; but there is the painful agony of reliving in my mind those uncertain early days.

This year we opted for a bowling party. Every child we invited had additional needs and I had put a lot of effort into making sure the event went as smoothly as possible.

It sounds pessimistic – but I have found that the best thing to do is expect the worst.

I fully expected either to have to cancel our appearance entirely due to hospital emergencies, or I expected full blown meltdowns and tantrums causing us to vacate the event early.

I expected explosive nappies and inadequate changing facilities. I imagined a chorus of every child at the party harmonising in a symphony of sensory overload and squealing.

I laughed to myself at the image of issuing each parent with ear defenders… for themselves!

I had finally learned the lesson that actually, I am not in control at all.

Epilepsy, cerebral palsy, chest infections, neurological irritability – none of it cares how much I want my daughter to enjoy her Birthday party. It might sound silly – but this is a big lesson for me.

As someone predisposed to anxiety and outbursts of emotion; it’s a tough pill to swallow when things don’t go my way!

Prior to having Amy, I was fastidious in my planning… I was always early, always over prepared. If I wasn’t early, I considered myself late.

I would be a flustered, palpitating mess. I have had no choice but to accept that sometimes… leaving the house at the time I want to or need to, is not always possible.

Anyone who can’t handle that isn’t worth knowing. So I threw caution to the wind and thought “what will be will be”. We can only do our best.

We are all in this together.

How did it go I hear you ask? Swimmingly. Honestly. It went really well.

The day before, Amy really suffered with her seizures. Recently they’ve been really bad. But strangely, on this day, I witnessed maybe only 5 small seizures.

Initially she had a big meltdown… transitioning and traveling is still a challenge.

One by one our little guests arrived. Most had never been bowling before.

It felt a bit like a social experiment!

The amazing thing about this party was that every child had their own set of diagnoses and each one adapted to the event however they could.

Some could walk with a bit of help if a walking frame or a parent, and could push the ball down the ramp themselves.

Some would be pushed over in their chair and with a bit of prompting could push the ball. Some needed more help pushing the ball but thoroughly enjoyed a “1…2…3…” buildup in anticipation of pushing the ball.

I would be lying if I said there were no meltdowns…

But the beauty of it was that we have all seen it before. There was no silent judgment or staring, no tutting. Just a group of parents that “got it”.

Each parent knew how much it meant for their child to get invited to a party, and how important it is to be included and have an activity catered towards their unique set of abilities.

I honestly feel quite emotional reflecting on it. The goodie bags weren’t sweets and yoyos.

They were sparkly sequin snap bracelets, a drawstring bag that could be reused and hung up on a wheelchair with supplies in, bubbles, a piece of cake (mainly for the parents in our case as we only have a few oral eaters with us), light up rings/glasses, and a nice smelling squishy toy for the more tactile approving child.

I am so proud of every child and parent that attended.

Sometimes just leaving the house and doing something you’ve never done before can be a huge deal.

One parent thanked me saying they’d never have considered going bowling as an activity as it’s one you tend to associate with being able bodied.

I can’t take full credit – my idea for the party came from watching a video Amy’s respite recorded of Amy pushing a bowling ball with purpose and precision.

I couldn’t believe my eyes when I saw the video.

I have great belief in what Amy can achieve, she already does so much more than we were ever told to expect; but at the same time, I try not to expect too much and appreciate all that we have.

To see her engage in an activity that doesn’t involve electronic toys or YouTube is a massive achievement.

It’s sometimes so refreshing to be around profound/severe disabilities and things be accessible, inclusive, and positive.

My tether to my old reality has loosened and I still find myself in unfamiliar terrain sometimes, but I love that we are all adapting and finding ways to make our normal work.

One of Amy’s friends was unable to attend due to family illness, but his mum still managed to drop off the most impressive Birthday cake I have ever seen.

I didn’t know what the design would be so was very surprised to see my daughter’s favourite ever toy appear before my eyes in cake form.

When we showed her she tried to bash it as it looked so much like the toy! (It’s a wobbling toy that you hit to make it sing). It was such a funny moment.

Separate to this we also had a small family gathering at our house. It was so lovely to see Amy so happy to see everyone.

The year before she had been quite unwell and lethargic and didn’t respond to anyone who tried to interact with her.

We are very lucky to have family that adapt to our normal and will do what they can to be a part of it and understand it all.

Amy may have got a lot of fantastic Birthday presents but I truly believe I got the best present that day in seeing my child have a nice day with her friends, doing what everyone else gets to do, and enjoying it.

I will never forget that day and will always be grateful that it happened.

I am learning lessons all the time, and I am so grateful that we are all in this together rooting for each other to make this the best life possible in spite of the curveballs get thrown our way.

Accessible Shopping Survey – The Results

In a recent survey we asked our online community to share some of their thoughts and experiences when shopping with their child.

The results are in and we plan to use the findings to support the GoTo Shop campaign and show retailers how they can make their stores more accessible to special needs families.

So, what did we learn?

Our survey was undertaken by parents of children aged from 13 months to 25 years with a variety of conditions such as Cerebral Palsy, Down’s syndrome, Autism and Metabolic Disorders.

86% of participant’s children were wheelchair users.

We asked parents what their preferred method of food shopping was; only 7% chose online while the rest preferred to physically go to the store or a combination of both.

However, 66% then went on to say that they have, at one point, felt forced to shop online due to accessibility issues at their local supermarket.

This highlights the need for retailers to be more inclusive because, although parents want to shop in their stores, they feel that it is not always an option.

The majority of those asked said they choose to take their child shopping with them but 85% find supermarket shopping to be a challenge.

We asked parents to expand on exactly why this is the case and found that the majority of participants found supermarket shopping to be a challenge because of issues surrounding inaccessible shopping carts.

In fact, 63% described a problem with pushing a cart and wheelchair simultaneously or that there was no suitable cart available to them.

“We need 2 people if we want to shop with our son, one to push the cart and one to push the wheelchair. Otherwise, I can only grab a few things”

A further 6% stated they needed to arrange childcare in order to carry out their supermarket shopping.

“I cannot take my son shopping so I have to fit it in around school hours”

When asked what additional features parents would like to see in their preferred store, 60% said they need an accessible changing area and 49% an accessible shopping cart.

One of our most overwhelming statistics shows that 91% of parents said they would be willing to travel to an alternative store if they offered a more accessible shopping experience.

This highlights the importance for retailers to be more inclusive or face losing customers.

Similarly, if supermarkets were more accessible, 58% of parents said they would be more likely to spend a longer amount of time instore; a considerable benefit to the retailer.

The survey has given some valuable insights into the issues faced by parents of special needs children and provided findings we can present to retailers in the hope they will strive to provide a more accessible shopping experience to ALL their customers.

It’s clear from the results that one major issue faced by special needs parents is that supermarkets do not offer a shopping cart which is safe and suitable for their child.

This means many are forced to shop online, arrange childcare or a second person, or struggle with a wheelchair alongside a shopping cart.

At Firefly, we want this to be a thing of the past by making sure #EverySupermarket provides at least one GoTo Shop cart.

You can help us to achieve our goal by taking our campaign leaflet and requesting a GoTo Shop at your local supermarket.

For more information on how you can get behind the GoTo Shop campaign, e-mail us at [email protected]

3 T’s – Tears, Tempers and Tantrums

Tears, Tempers and Tantrums.

Oh man, eh?

If there was one simple trick to help avoid these behaviours wouldn’t parenting be a whole lot easier?!

Sadly, there is not one trick- there isn’t even a step by step guide,there is however; luck, patience, practice, frustration, embarrassment (even if we don’t like to admit it), avoidance, understanding, acknowledgement, pretend-we-didn’t-notice and finally, acceptance.

Tears, Tempers and Tantrums (3T’s) are all part and parcel of having a little mini version of your beautiful self in this world.

My experience with my three boys regarding these 3T’s (and no,not Michael Jackson’s failed nephews band,yep I am showing my age!) was very different for each of my boys.

Ethan my eldest, has always been the best 3T-er ever.

Hands down, Ethan wins. Ethan’s brothers own versions of the 3T’s never really bothered us, simply because Ethan had done it all before them and at such an intense level that their 3T’s were almost laughable in comparison.

I am pretty sure I am not the only parent of a child with such complex needs like Ethan has, that when the siblings who are ‘typical’ try it, we just kinda eye roll our way through it.

It is a perspective kinda thing really, isn’t it?

Ethan has never really understood waiting,’no’ and ‘stop’ – he saw these words as an invitation to throw some amazing 3T’s in the most mundane circumstances or in the most awkward of places.

Looking back, I can tell you, our little man kept us on our toes.

He certainly paved the way for his brothers who, try as they may, never really had me out in sweats while they threw their very own 3T’s.

Ethan would have me panting, pleading, distracting, sweating, begging for the ground to open up while he threw a regular 3T.

We tried everything.

I mean absolutely everything, but regardless of our picture boards or our explaining about what was going to happen next, our little dude could not help but throw a 3T our way.

It took us years and years of understanding and educating ourselves and those around Ethan to accept that these 3T’s were not his fault nor were their our fault.

They were simply our little man’s reaction to things and situations he could not understand or cope with.

Mostly we had to learn about sensory overloads and what that meant for our son and try our best to help him through these overloads.

As the years went by, Ethan 3T’s calmed somewhat.

Don’t misunderstand me, the boy can still throw a whopper but these days he uses them sparingly (mainly due to Ethans syndrome progressing).

What Ethan taught us about the 3T’s during his younger days was that we were not to blame, nor was Ethan.

If there is one thing I could say to any parent out there who’s child throws plenty of 3T’s it is this : IT IS NOT YOUR FAULT.

Yes, all children know how to throw a 3T, lets face it, the only kiddies who don’t are the kiddies that ‘Mary’ has yet to have – you know ‘Mary’, we all know ‘Mary’- if I had a child they would never do that or that and if they did by god they’d never do it again! BULLS**T ‘Mary’.

There is something however, slightly more intense about the child throwing a 3T for no apparent reason, the child who cannot regulate themselves as well as other children, that is the child that draws an audience of ‘Marys’ or ‘Know -it -all Noras’.

Those parents who deal with this are my kin, you are my people.

You are my heroes and you should all know that you are amazingly capable even when you feel like you aren’t.

This is so frigging hard to deal with especially in public.

On one hand you are trying your level best to help regulate your child while an audience of (probably ‘Marys’ & Noras) gather to watch you, all while tutting and judging you.

It is such a horrible feeling.

It forces us to get angry. We feel like we have to explain our child’s behaviours to complete and utter staring strangers.

This makes our faces go redder,our skin wetter while our mouths seem to suddenly become dry.

It takes us away from our child, even for a split second, and that brings guilt to the forefront.

It’s a vicious cycle and that is just us!

Our child who is currently dealing with one hell of a sensory overload that they feel like their world is spinning rapidly out of control is having such an intense meltdown that all they need right there and then is a safe place not a parent or carer who feels like they are being harshly judged.

There are no tricks or tips to stop this from happening to a child who has sensory issues, autism, social anxiety…

There are only tools to help both of you understand the triggers,predict the behaviour, manage the predicted behaviour and wing it.

That’s the truth. Nearly, if not all, parents we see are indeed winging it- even us, the experts in our children who have extra needs.

All we can do is be patient,be present and remain calm; which is so much easier to say than actually do;but in time and with plenty of experience you may very well find yourself calmly helping your child and not even noticing the ‘Marys’ or ‘Noras’.

Of course once it’s all over and the ‘Marys’ are slowly moving away, you may even take a bow… or that could be just me?

Little Changes Can Lead to Big Tears

David has always struggled with transitions. Sometimes it’s easy, sometimes it’s difficult and sometimes it’s a disaster.

Whether David likes it or not, he is going to have to spend a good deal of his life moving from place or place and task to task so it is something we are helping him learn.

A transition is when there is a change in a situation.

This could be not going to school because it is half term, going to the park with Granddad when you expected Grandma or going from playing a game to getting ready for a bath.

It was this last transition that became particularly tearful last night.

We are fairly routine with ‘early warnings’ in our home.

This is not the kind of warning I got from my Gran when I was being a bit naughty but a pre-emptive announcement of a change in activity.

“It’s nearly time for a bath”, I holler to the eldest and youngest playing in the lounge.

I then repeat the notice and sign it in Makaton for David, checking to see if he has understood.

He signs and grunts “Nah” for ‘No’ back to me so although he doesn’t agree with my suggestion, I know it’s been received. A few minutes later we repeat the process.

I let Anthony and David know it is nearly time for a bath and they will have to stop playing with their respective games and electronic devices soon and to go upstairs.

This is a way of setting expectations for the kids.

David’s response, however, is the same. This time I confirm that ‘yes’ this is going to happen. Finally it is time to get ready for a bath.

Anthony and Jane reluctantly, but happily head for the stairs. David bursts into to tears and runs into the lounge.

One of the ways David calms himself is through a small routine with a set of toys, he will often then carry them through a transition if allowed i.e into the car, through to the dinner table etc.

I can see my small boy huddled in a corner with a small pile of toys that he is quickly flipping over in sequence.

Although gathering the toys is a way David has learned to cope with transitions it’s not necessarily a long term solution and not one we have decided should extend to upstairs as it can create further problems in going to bed etc.

Instead, we encourage David to finish with the toys.

People with autism are driven by routine and being comfortable.

Having to stop preferred, comfortable activities in exchange for something like going for a bath is really difficult.

We have been helping him with this via an ABA type approach. We can now help David put the toys away, by setting an example and singing a song about putting the toys in the box. #

As I approached with the box and starting to sing, David knows what’s coming.

He is crying loudly with tears streaming down his face.

David finishes a cycle of his routine and waits as I slowly wave goodbye to the toys and one by one gently move them into the box singing the same song.

David is holding on tight to the last toy. I very carefully pull his hand and move his clenched fist over the box.

He drops that last toy in. I look over at him and give him a big smile, and his tears give way to giggles of relief.

Well done David, you put the last toy back. Maybe it was because he was finally ready to.

I put the box away and David takes my hand as we head towards the stairs. Sometimes he needs help, sometimes he copes.

It’s slowly becoming less of the first and more of the second.