Regardless of what infection happens to be doing the rounds, there is nothing quite an effective as a pandemic to induce displays of herd panic-behaviour in individuals who in fact probably don’t have all that much to worry about. Clearing supermarket shelves, for instance.

Seriously people, just don’t do it. Paracetamol to you is a regular, straight forward painkiller. Easily obtainable for a few pence and useful if you’ve got a headache.

For children like my boy, paracetamol is the wonder drug that keeps his temperature down when he’s poorly, reducing the risk of catastrophic or life-threatening seizures. For others, it’s the difference between a life of unimaginable pain and being able to at least take the edge off so it is possible to still go about their daily lives.

You may not think that buying pack after pack of baby wipes, loo roll, soap or disinfectant gel is a problem. For us, not being able to get hold of essentials makes an already stressful life increasingly difficult.

We also need soap, in order to wash hands properly, and alcohol gels to protect against bugs when we can’t wash our hands so easily – think changing nappies in a lay by for example. Our children may have medical devices to care for too – PEG tubes for example. Or in the case of others, PICC lines used to give medications etc directly into the vein draining into the heart. For us, being able to maintain a clinical level of cleanliness is critical to keeping our loved ones safe longterm, not just until the current panic passes.

If the public gave so much thought to hand hygiene etc. every winter, then maybe seasonal flu and norovirus wouldn’t strike the same level of fear into our hearts as the coronavirus pandemic is inducing in the general population.

Makes you think, doesn’t it.

We read a book in our house called, “I Had a Favorite Dress.” It’s about a little girl whose creative mom helps her modify a favorite dress as it becomes too small, torn, and wrong for the season.

All my kids love this book, and are visibly happy when the girl sees the new incarnation of her favorite clothing.

I’m not attached to clothes, but I get attached to routines. So, I have a favorite day of the week instead.

Currently my favorite day is Thursday; it tends to be full of errands, but after school we have movie and pizza night, where we lay about as a family and just enjoy each others’ company.

About a year ago, I loathed Thursdays. They became the only day my son could see his OT, and it was at a very awkward time of day.

My son had to attend school for a half day, then, at lunch time, muddle through an hour of intense therapy work. While he was hungry. And already worn out from school.

Not to mention I had an 18 month old little sister in tow. You can imagine how much fun these days were.

Back then, Mondays were my favorite day, because it meant older kids going back to class after a weekend of busyness, household chores would be done during the morning, and I could get everything back on track.

In fact, all the other days were fine, too. It was just that awful Thursday, looming over the week, filling me with dread.

I tried my best to be hopeful and helpful to my son on those days, so he could have some success.

Unfortunately, most Thursdays ended up a wash. Disappointment and grief would come to me as well, in thinking another week had gone by without good OT practice, that I was failing my son for not being able to help him more on those days.

It was rough.

What I needed to do was adapt, like the mom does in the dress book.

When the dress shrinks, it’s made into a shirt. When it rips, it becomes a scarf. When all but shreds are left, mom crafts it into a hair bow.

Adapt, adapt, adapt. That’s what a special needs parent must do.

A lot has changed since those awful Thursdays.

My son started preschool, and the bulk of his therapy is done in a fun classroom, with friendly peers, in the morning when his concentration is at its best.

We took a break from outside therapy because – let’s face it – it just wasn’t working for us.

We moved into a house, which provides more space to do therapy at home, and my son is having great success.

We’ve adapted, I’ve learned, and my kids are happier. Any day that comes together is my favorite.

What is normality for you? Before having Rory and Alfie, I imagined what it would be like to be a mum.

To raise my children to live strong and independent lives, yet that is not the reality we face.

For us, our days are full of complexities and worries, and most notably, living in a constant state of stress.

Stress about Alfie. Is Alfie okay, are his ears (cochlear implants working), does he have an ear infection, has he had his medication, does his chest sound healthy, is his nystagmus (eye shaking) worsening, has he eaten enough… All of these questions and so many more.

Normality for us is my blood pressure constantly above average, my phone always on in case any of Alfie’s medical professionals need to get in touch, Zak facing the brunt of my mood swings as I try to deal with the stresses of each day whilst also training to be a solicitor.

Normality for us is not normal day to day life.

Each day that I drop Rory and Alfie off at nursery it takes far longer than it should so that I can ensure staff are fully updated on how Alfie is doing and informed of any changes he may have had to medication/routine and what appointments he may have that day.

At pick up, it is a full breakdown of how Alfie has been, his mood, how well he has eaten (his usual refusal of fruit), how well he did in one-to-one time, whether he slept, and how well he took his medication.

Other parents are there for 15 minutes, it regularly takes over 45 minutes for us in order to ensure all aspects of Alfie’s day have been discussed.

Work is constantly interrupted by my phone going off- a call from either nursery (to let me know something is wrong with Alfie or that he has had an injury) or a medical professional involved in Alfie’s care to discuss how he is doing or to arrange an appointment.

These phone calls are often distressing, as with so many professionals involved in Alfie’s care, the updates can often be negative or concerning, such as the need for a further video fluoroscopy or concern as to Alfie seemingly failing to track objects with his eye gaze.

Yet this has become the norm for us.

I can’t remember the last time I had a day where I wasn’t in a state of worry about Alfie and his health.

People often ask how we cope, how we manage on a day to day basis, and the truth is that we have no other choice.

We cannot give up; we cannot walk away. This is our life. This is us every single day and will be for the rest of our lives.

Every parent wants their child to have friends, good friends that like them and care for them, friends that they can trust and build healthy relationships with.

But what about when our child is disabled, different or diverse?

A mother from Neptune Beach Florida, USA, spoke about the overwhelming response she has received after Tweeting about her lonely 21-year-old Autistic son.

Kerry Bloch’s son David has been non-verbal for most of his life but recently amazed his parents by asking his first question: “Would someone like me?”

David’s story got me thinking about my own 17-year-old son, James, who is also Autistic and has Learning Disability and Epilepsy along with anxiety difficulties.

James has never had the kind of friendships that most children and young people have; he’s never had friends round to the house or gone to someone else’s house, he stopped being invited to children’s parties when he was about six or seven.

When James was out of school for over a year, was actually out of everything for over a year when he was unable to leave the house due to severe anxiety, there were no friends to come and visit him; nobody called.

The only human interaction he had was with family and the few professionals that came to check on him and work with him. No friends.

But is that the full story? Are there other young people that like my son James?

I remember that once James had been able to start going out again, one of the first places we were able to visit was the farm shop that he loves to go to.

They sell lots of things that James enjoys, but it is also a safe place for James.

Many of the staff are very kind to him, know him by name, ask him how he is doing, and don’t mind if he eats what he has chosen before we’ve been able to pay for it! But are they his friends?

When James has been at church, people interact with him, ask how he is doing, care for him, but these lovely people are all adults; none of them are his age, none of them would be what might be understood to be his friends.

But then when we were about to start re-engaging James back into short visits to school, the weekend before his first scheduled visit I happened to bump into one of the students in his class, Brendan, and his mum at the supermarket.

It took a moment to recognise where I knew them from as it had been so long since James had been at school, but when I mentioned that we were going to try to bring James in for a school visit the following week Brendan literally jumped for joy and kept repeating James’ name… he was delighted that he was going to be seeing James again!

Now that James is back at school regularly, three short days a week, he is able to interact with other students.

Another of the students at school, Arya, regularly asks about James and seems genuinely pleased to see him.

Maybe in Brendan and Arya, as well as other students, James does have some friends of his own age after all…

David’s mum Kerry from Florida Tweeted her son’s question “Would someone like me?” and it went viral, with responses from thousands of people including parents of other Autistic children and young people, but also sports people, emergency services teams and loads of other places… all affirming that they liked David a whole lot.

Their story going viral has brought some attention to the often lonely world that Autistic children and young people can live in, that their families can live in.

We all too often hear the stories of Autistic children being left out of class-wide party invitations, or the stories of them sending invitations to their own party but no-one coming.

Perhaps this story will help to raise some better awareness, acceptance and understanding and help us all to appreciate better that we all long to be liked, to have friends, to be included and to belong.

What can you do today to make a difference for someone you know?

This week, the Dude has had one of the best school trips of his young life; he and his friends have been ice skating.

Yes, you read that right. Ice Skating. In a wheelchair.

Usually when I tell people that Sam went ice skating and loved it, I’m given a bit of a funny look.

After all, all our friends and colleagues are well aware of just how physically disabled our little boy is ; even sign language is a struggle for him.

And yet, last week, his class went off to a local ice rink and had an awesome time scooting round on the ice in their chairs, with carers and parents doing the pushing.

One of the greatest assets in Sam’s life, is his Dad.

Together they are partners in crime, always pushing the boundaries of what appears possible.

And it was Daddy who was with him at the ice rink; while the staff very sensibly donned spikes to allow them to grip the ice, Sam’s Dad (with encouragement from Sam himself I have no doubt) threw caution to the wind, grabbed a pair of skates, and off they went at some speed!

I have seen the photos. And videos. And there is no doubt in anyone’s mind that Sam absolutely loved every minute of it.

My boy is definitely of the ‘scream if you wanna go faster’ type and had the time of his life being pushed around the rink, doing his best ‘fast and furious’ drifting round the corners and, evidently, being a bad influence of the other adults… who by this point had traded in the spikes for skates and were ALSO having a fantastic time with their respective charges!

I can safely say, I have never been prouder of having two men in my life who think nothing of pushing the boundaries and defying conventional wisdom.

Our belief has always been that where there is a will there’s a way; just because Sam makes use of a wheelchair to increase his mobility should never mean that he is prevented from enjoying being a child like any other.

We are incredibly lucky to be surrounded by others – school teachers, carers, family and friends – all of whom share that same philosophy.

And I for one know a little boy who thrives on it.

These sanctimonious, rose-tinted and insensitive posts that I often see popping up on the internet really drive me mad.

These messages that we are meant to believe and the lessons about our new existence that we are meant to swallow.

Before Harry I was Hayley from Northampton, loved music, enjoyed art and was moving into a career in Marketing.

Now I am Hayley * drum roll*.. Mum of severely disabled boy Harry and his two sisters (what’s their names again?).

You see, this is what happens ..we become defined.. never to be just Hayley again. And do you know what doesn’t help.. the messages that we see bandied about the media.

Telling someone who has a disabled child that what they are doing makes them a saint is well meaning.

However, for a mum who is struggling to find their new place in the world comments like this can make a person feel more isolated, defined and un-relatable in the realms of the normal families.

Also it’s that ridiculous ideology that we’re quite often subjected to that “Only special people are tasked with looking after special needs children, the people who can handle it”

Like what the hell? Talk about ways to make a person feel inadequate and guilty when they don’t want to or can’t handle it.

Guess what stupid “inspirational quotes” we are quite often not stronger, we are not more resilient more able to find joy in the smaller things and not made of stone like your twee statements suggest.

You see we know you mean well but your posts are damaging to many… we are just people trying to cope the best way we can, we just want to operate on the same level as everyone else, no pedestals needed!

We do not need praise for looking after our child, we have not been given any other choice.

So please quit it with the insensitive, trite, blanket statements about how parents of special needs children should feel or behave.

We do not need them.

We are all different, and I think it’s important to look for the individual when you talk to anyone no matter what their circumstances – no one wants to be defined by what’s happened to them, especially when they have so much more to share and to make life about.

Encourage the person to allow themselves time; time to themselves, time to rest and time to reflect.

It’s ok to not be ok, its ok to need help and to ask for it and its ok to have a whole host of feelings that nobody would dare write on a sugar coated post it note.

Motherhood is hard full of so many rules and opinions but who really owns the guide book? My advice is look after you and you will be far more able to tackle what’s coming and just be you.. with a child with special needs.

You’ve got this!

Whether you’re in the US, Europe, Asia, Africa……we will have to live our daily lives a little differently than ever before.

Kids are home, caretakers may not be able to be available as much, family members may need our help, supplies are limited, and nerves are high.

Each of us has to figure out a way to push through the next couple of weeks.

I surmise that many of you are stressing that you won’t be able to access your typical therapy providers so here are some creative ways to incorporate active movement:

1. Keep up with school work

2. Create a healthy menu, cook or bake together.

3. Arts and crafts activities

a. In sitting- can promote range of motion for shoulders
b. While lying on your belly- can strengthen head and back extensors
c. Sitting on a swiss ball- can promote balance

4. Take a walk-whether you’re all walking or whether you’re pushing someone outside, it’s great to be outside. Just consider social distancing.

5. Practice yoga by viewing video through your cable network- make it a game, a competition, or a contest

6. Play outdoors (sidewalk chalk, finger paint on plexiglass, footprints on the grass, slip and slide, sprinkles)

7. Limit screen time to certain times of the day

8. Clean out closets and create a pile for donations

9. Post free items on your community list serve

10. Have a dance party (moving and stopping as the music is turned on and off, respectively).

11. 2×15 minutes of dedicated time to exercises to stay strong and flexible (if you don’t feel that you know what to do- google it. For example” Ideas for sensorimotor activities for 1 year old..)

We can’t change the reality of the situation; however we can surely change the narrative that goes with it.

Our children feel our angst, so think positive; take frequent mental and physical breaks.

Remember, this too shall pass!

Nearly two years ago, I lost my dad. He was not very old, only nearing 70, and suffered a brain aneurysm that was fatal.

My parents had just visited two weeks’ prior, so I am grateful for having seen him so recently, and having a goodbye of sorts.

This didn’t make losing him any easier, but softened the blow.

Over two years I have learned to reach out to others and talk about the pain of loss.

I’ve found my role as a special needs mom prepared me for this; I understood having something very important taken away suddenly and unexpectedly, as my son suffered a brain injury during labor and has cerebral palsy as a result.

That one medical incident forever changed his life, mine and his father’s, his siblings’ and others’.

In moments, something was taken from him (being a neurotypical child) that can never be returned. It was a loss I felt deeply and struggled to accept.

My dad’s passing was earth-shattering for me, but I was able to cope with it, I believe, much better than I would have without my son’s experience.

What I wasn’t prepared for was the waves of grief that came when I first realized my dad had been a huge supporter and advocate for my son.

The first time I realized this was when a casual thought passed through my mind about Henry’s (my son) change from a crib to a bigger bed.

Oh, I remembered, my dad said he’d help me design one. Cue the sobbing.

For months afterward, just looking at Henry’s crib would produce this effect.

Even talking to friends about making Henry’s bed would prove too much to handle.

My dad – also named Henry, like his father before him – loved my little Henry so much.

He loved all my children so much, from the very start of each of their lives.

What made my dad’s grandpa love so wonderful was that it wasn’t specially bestowed on any of my kids; he loved them all the same, wanted to know and nurture them as individuals, and help makes their lives richer in any way possible.

He was the kind of grandpa to get right down on the floor and play with them.

Where Henry expressed apprehension as a baby with other adults, my dad was an exception.

He’d make funny faces at Henry and never shied away from helping him with physical tasks – although he’d always ask first if Henry wanted help.

That’s a big deal to me; I much prefer people ask my son if he wants help than automatically doing things for him.

My dad always talked about my son to his colleagues and friends also.

My son was as much a presence in their lives as my father was, which is remarkable considering most of them never even met my son.

When we needed help paying Henry’s medical bills, my dad circulated a funding campaign and donations came pouring in.

During March, or whenever something concerning CP came up in the news, my dad made a point to post articles on his social media and ask me questions. He put CP in front of other people, gave them solid information, and always spoke positively of my son (and me, for that matter).

Losing my dad felt like a crushing blow, not only to me but to my children.

I’m sad for my dad who won’t see Henry and his sisters accomplish so much, do so much, be so much of who they are. And I’m sad for my kids that they won’t have grandpa cheering them along the way.

Even writing this, it’s almost too overwhelming to think about without tears.

However, I am so very thankful for his advocacy and the legacy of it.

If he has inspired one other person to think about physical disabilities, cognitive conditions and the real people behind those labels, he has done my son a great service.

To my dad – we love and miss you, and will carry on your advocacy in your absence, to honor you.

 

I’m feeling downhearted today. I can’t even go into specifics as to why, but it relates to my daughter and how she is unable to tell me about her day.

I had already been feeling a little low. You see it was her Birthday recently, and every year I try to update a slideshow of her for when the family comes to visit.

I noticed whilst going through the pictures that we go to the same park every time to use the roundabout.

The park in question is actually over 10 miles away from our house. The wheelchair accessible roundabout hasn’t even been there for a year and we have used it at least 10 times.

I don’t know, or indeed want to know, how many parks we pass whilst traveling down windy country roads to get to that piece of equipment.

It’s a different town and county from us so it seems strange in this day and age to have such inaccessible leisure facilities for children with a physical disability.

One of our local parks recently updated its facilities. As part of the process they proactively took to Facebook and asked the community what features they would like the park to have.

I went on one of my classic rambles about the importance of inclusion and accessibility.

I mentioned how great it would be to have a wheelchair accessible roundabout (that all can use), a wheelchair swing (or at least one adapted to make it easier for a child with physical limitations), a sensory garden for those with visual or hearing impairments to explore texture, smells etc.

I mentioned a lot of things to be honest. I implored fellow parents to request the same. They did. They’re good like that.

What happened I hear you ask? Well it was the usual.

They thank you for your excellent idea, pay a whole load of lip service to you, agreeing the validity of your points… then they consult their bank balance and decide to instead put in some outdoor gym equipment that not only can my child not use… actually tore part of a child’s finger off in the first few months of being installed. Great work!

I am fed up with being ignored. My child is more disabled more by her environment and by the community than she is anything else.

Those in a position to change this, that hold the key to her potential and opportunities – listen up!

My daughter is 6. She’s a child. She loves to be thrown around, I’ve heared her roar with laughter as her daddy throws her up in to the air and sends her on “the daddy rollercoaster”.

I’ve seen her squeal with delight as daddy charges round the skatepark with her in her wheelchair, flying up the ramps with great speed.

I’ve seen her on the beach wheelchair getting to ride on the sand for the first time; and look at the sea from the same perspective that everyone else can.

Last week when I took her to the roundabout she laughed excitedly and cheered at the mere sight of the roundabout.

She showed that she knew what was about to happen and couldn’t wait to get involved. She absolutely loved it. It was worth the 10 mile trek.

My heart felt a bit heavy as we left the park… she was looking at all of the bits of equipment with interest.

She could see the other children playing. It was the first time I have ever noticed her thinking about her differences.

I hated so much that we had done a 20 mile round trip to utilise just one piece of equipment.

There is so much out there. If you google “inclusive play equipment” you’d be amazed at just how much exists to help make it so that every child can enjoy themselves.

I cried tears of joy once when a hospital provided us with a bed that Amy would be safe in.

I was so happy and grateful just knowing that for one night she would definitely be safe without me having to physically cling to her or stay awake all night.

It shouldn’t be like that. Not anymore. I don’t want to feel like it’s a special treat when I can change my child’s nappy in a dignified way.

I don’t want to walk through parks with blinkers on, trying not to look at just how much of the world isn’t for people like “us”.

At the moment I am at that difficult part of all of this where I can just about lift her without needing a hoist, but am finding physically it is taking a toll on my back and that I probably should start hoisting her more.

It isn’t so much her weight, but more her sudden unpredictable movements that can cause me to twist my back out or cause her injury.

I know that this summer I’ll be lifting her to place her in nest swings and onto slides even though each year it gets harder and harder.

I dread the day that I can’t do that anymore. She doesn’t yet understand that the daddy rollercoaster can’t last all day, because it’s hard work for daddy.

She will throw a big strop, kick out and scream because she doesn’t want the fun to end.

I don’t want the fun to end either, though sadly designing parks isn’t my job and I’m not the one holding the purse strings.

The right setting has the ability to promote learning social skills, playing with others, exploring surroundings, cognitive development, sensory feedback and so much more.

To me these are all fundamental in raising a child, especially one that needs all of those things even more.

I gave up going to soft play centres a while back. One charged us extra because we wanted to use the sensory room.

This meant that we paid MORE than Amy’s able bodied peers, even though we could experience about 90% less of the place than them.

I complained to the company and they offered me a free visit. No thanks. Change your policy. Another play centre told us off for leaving wheelchairs and medical equipment near the gate.

We couldn’t take those things in with us which was bad enough, but to insist we separate our children from life saving medical equipment? No. We have come some way in regards to attitudes about disability but so much more needs to be done.

I’d love to see a place have a lift or pulley system to get my child to the top of the slide. She loves the slide more than anything. But getting her on one isn’t possible.

I know we are a minority, and I know I sound quite demanding… but before Amy I hadn’t even considered the importance of such a thing.

I hope that by raising awareness that one day even one persons’ opinion will shift, and that they will somehow make the world a place our family can enjoy just as much as everyone else gets to.

When Amy isn’t with me I try not to look at parks as I walk the dog. I’ll even take a different route if I’m particularly sad.

Even then I’ll get sad that I’m doing a walk that isn’t wheelchair accessible and feel defeated that this is a part of the world she won’t get to experience.

It’s hard not to get overly bitter and emotional about it. She isn’t going to change. But the world around her should.

I’m not saying that overnight absolutely everywhere should become wheelchair friendly.

But it’d be nice if that shop I enquired about wheelchair access could muster up something better than “oh sorry no, we aren’t accessible” and look at how they can make it so that it is accessible.

When our lives aren’t being over medicalised involving hospital appointments, therapies, physio, tube feeds, meds, seizures and so on.. it’s so nice to actually try to engage with the world around us and focus on what’s important in life – making memories.

The two most important things to Amy are 1) family/people she loves, and 2) fun.

One of the best places I’ve ever been with Amy was the space centre in Preston. It is purpose built and designed to be accessible.

There is hoist tracking and just so many amazing features I couldn’t quite believe it. It isn’t near to where we live at all but worth going the extra mile for and booking in.

I just wish every town could have at least one place like this, and outdoor space too.

What does everyone do for a fun inclusive day with their child?

I’d love to hear of the best places you’ve been to or what you like to do to keep your child active and engaged with the environment.