A Letter To My Friends: Yes, He Has Changed, But He’s Still the Same Boy.

After a 3 week stay in hospital, my son is home and doing really well – given what had recently happened to him.

A question I’m asked by almost everyone I see now is, “What happened?”

Which I don’t mind, I’d much prefer people to ask.

It’s just hard to explain it all without going into much depth, but to cut it short… Aj suffered a 2.5 hour tonic colonic seizure, he had to be anaesthetised, intubated and ventilated in resus to prevent him going into cardiac arrest as his little body was under so much stress.

He was then sent as, ‘time critical’, to the nearest Children’s Hospital with a PICU (paediatric intensive care unit), which was 45 miles away.

During his 3 week stay at the hospital, after being extubated and leaving PICU, heading for the children’s ward, he had 3 more days of intermittent seizures.

He ended up moving back on to HDU (high dependancy unit), he was started on 2 regular anti-convulsants and he also had a gastrostomy (feeding tube) placed.

Soon after I’ve explained, people turn to my son and look at him with pity.

I understand people feel bad for him, it’s not a nice thing to happen to anyone, never mind a child – and if I could take it all away from him, believe me when I say, I would.

But he doesn’t need you to feel sorry for him, he’s still Aj.

He’s still the same little boy he was 3 weeks ago.

He still have the same beautiful smile.

All that’s changed are his physical abilities.

It’s hard when people pity you, I’m trying so hard to be positive – to make people a little less nervous (I’m guessing?) around him, but at the same time.

I’m still grieving for the parts that have gone.

You see my son used to walk, not very well.

But he walked.

He would follow me into the kitchen and point for his biscuits.

He could climb/crawl up the stairs.

He could climb onto the settee.

Get himself off the bed.

Use his own iPad.

Lift his own drink.

All of that has gone.

“Will it come back?” – a question I’ve heard, and asked myself, and doctors a thousand and one times.

The only answer is that we don’t know. No one knows.

You see the longer a seizure lasts, the more likely it is that there will be lasting damage to the brain.

He already making huge improvements though.

Two weeks ago his doctors feared he was blind.

He wasn’t fixing or following anything with his eyes, they weren’t even reacting to lights.

He couldn’t roll over or even change his own position.

Now, he’s sitting unassisted for longer periods of time and I’m more than 99% sure he’s seeing the TV!

A recent eye test showed he’s now following things with his eyes, but his eyes are, ‘wobbling’, in certain directions, which can indicate changes in the pathways to the brain.

There will be further investigations into this.

He’s even starting to try and crawl.

I’m hopefully he’ll regain some of the lost skills.

But, at the same time, it’s made me wonder.

Aj using his Scooot

Is walking really all that matters?

It’s taken me a while to get used to, but now I’ve realised, it doesn’t matter if he doesn’t do all the things he used to.

If he learns to walk again then yeah, that’ll be awesome!

And if he doesn’t?

That’s fine too.

As long as he is happy.

Not All Friends Stick Around When Your Child has a Disability

Keeping in touch with people is extremely hard.

I’ve had colleagues joke that I, “only”, work one day a week and must spend my life enjoying coffee shop trips.

I wish this were so.

And if someone is doing that for a living – how do I apply?

This journey has made me become a very unreliable person. 

My two weeks in advance are generally always booked up with things like physio, speech and language appointments, ophthalmology, audiology, optometry, orthoptics, surgical pediatric appointments, dietician, occupational therapy, portage – you get the gist.

If this isn’t a challenge enough, add in Amy’s chronic crying – this is enough for me to either HAVE TO leave the house, or HAVE TO stay in and isolate myself from the world.

It makes me quite emotionally unstable, it can make me appear irrational, it can make me shut myself well away.

On the outside I’ll smile bravely, have a laugh, pretend all is okay.

But on the inside I’m hurting deeply and want nothing more than to hide away in bed and pretend everything is okay.

I’m sure a lot of us are like that and I know we will all be okay in time.

It can make us so unreliable, depending on even the last ten minutes that can determine how our free time is spent.

There are days when I can’t be alone just us, I need to surround myself with distractions and conversation, but equally there are days when I need my space.

I have a small group of incredibly supportive friends that never judge me for that. 

These friends understand what we are currently going through and will go out of their way to be there for us.

It’s incredible.

You really learn who matters and who to keep in your life for the good times (which are absolutely going to happen.)

Today we got news that Amy needs major surgery.

We have wondered for over a year now since her fundoplication failed.

This news has come as a bit of a relief because to finally know, but obviously we are scared.

No one wants to make the decisions we have in the last 21 months, but when you look at the bigger picture this needs to happen.

This news in itself will take a while to settle with me.

I need some thinking time and will most likely withdraw into myself a bit whilst I think about life and why it perpetually throws these curveballs at us.

Never underestimate the value of family and good friends. 

They are there for us through thick and thin, when I can barely cope, and when I am ploughing through fighting for what we need to make things okay.

Even little gestures can help our day be much easier – even just a friendly stranger helping me lift the wheelchair up some steps, for example.

I’ve had friends arrive with flowers – just because.

I’ve had friends sincerely offer to help me with Amy’s care needs.

Incredible, all just amazing.

They don’t have to do that at all, and yet they do.

I guess friendship means something different to everyone.

To me it’s someone who can listen and understand, but also include you in their life.

Someone who can provide a distraction, someone who can make you laugh.

Someone who can deal with the fact I will NOT cry in front of them!

Friendship, now, is simple. 

I have filtered out a lot of people.

People who are not willing to be part of our complicated life – and that’s fine, I wish them well.

They are missing out hugely.

I had a friend I have known since birth tell me they wanted to, “take a back seat,” on my life.

This shattered everything I had ever believed about friendship, how they could just request to disappear from your life after being such a huge part of it for such a long time.

I am still reeling from it now and it has made me a lot more cautious who I let in.

I may come across very friendly and outgoing, but this is all a front and letting people in is actually very hard for me.

My mix of friends is a great one.

Friends from when I was tiny, friends who I have met through the special needs journey who, “get it”, friends from college, friends from uni, colleagues and ex-colleagues.

A very mixed bunch all from different backgrounds and places.

It is our differences that make us beautiful, variety is the spice of life, and all that!

I want Amy to have friends with extra needs, friends who are typical who can advocate and include her.

I want so much from this world and I am glad I have the people around me to help me get it.

I love seeing our children develop their own personalities and skills whether they are children with disabilities or not.

To those friends – thank you so much.

To those who are friends with others like us – thank you so much.

You help us carry on and you keep our faith in humanity!

And we are also sorry for so openly discussing poop, stomach related issues, ranting about “the system”, drinking all your coffee, and for using long medical jargon!

The Joy and Sadness of Special Needs Equipment

Probably the first ‘special’ equipment we acquired was her feed pump – which pumps the formula from a 500ml sachet through a long tube and into her stomach.

I hated it until I came up with the idea that I could use a cheap coat rack instead of an expensive IV stand to hang her food – which I thought was terribly clever – and Vegemite discovered she could decorate the coat rack with stickers and Christmas lights.

After that, it became less hated, to the extent that I hardly think about it.

The feed pump was followed by the suction machine…

And then the standing frame and the supportive seating – in several different varieties, some better than others – and the bath chair, which never got much use, apart from in the paddling pool in summer.

She outgrew her ‘regular’ stroller and after a number of trials, we found a special needs stroller that worked well for her and provided all the right support.

I love it and hate it in equal measure and the fear that she is swiftly outgrowing it because she has such long legs can keep me awake at night.

After the special needs stroller came the hospital bed.

She needed a bed where the head could be raised to help with her reflux, and I needed a bed I could raise and lower in order to protect my back.

The gait trainer came next, but wasn’t as successful as the standing frame in encouraging her to bear weight through her legs.

Several standing frames have come and gone in recent years as Miss Z grows and her needs change.

And we now have a special needs car seat.

Yesterday, her latest piece of ‘special’ equipment arrived: a raised bath.

It is a pretty simple design – a small bathtub on a frame with casters – but it means the world to me.

Miss Z loves her baths.

Bath time is her favourite part of the day, and the one time when you are guaranteed a smile, and usually a song too.

Baths have also been the best way to calm her when she is upset, after a seizure for instance, and they also help to loosen the secretions on her chest, enabling her to breathe better.

But most importantly, they make her happy, which is why I’ve spent a long time debating, discussing and brainstorming with various occupational therapists and physiotherapists about how I can continue Miss Z’s baths as she gets bigger, and therefore harder to lift in and out of the bathtub.

The easy solution is a bath chair, which can be wheeled into the shower, but she doesn’t like showers, she likes baths.

And it was very important to me to give her this one thing that she enjoys.

The solution was amazingly simple, but until I met the right phsyio, I didn’t know they even existed – at least not in a form that fit in our bathroom.

Yesterday the raised bathtub arrived and today we tried it out for the first time.

It will take some getting used to (by the end the bathroom floor was flooded and I was soaking wet, red faced and frustrated), but Miss Z’s huge smile as she splashed around made it worthwhile.

It was a small – and in the end, surprisingly simply resolved – battle, but it is still a win.

We have a bathing solution that doesn’t involve massive renovations to our bathroom…. yet.

All this equipment is important to Miss Z’s quality of life.

Not everything works for Miss Z, but the things that do are immediately incorporated into our daily life and as Miss Z gets bigger, they become essentials.

We wouldn’t be able to get around without the stroller and car seat, she wouldn’t be able to sit or stand without the seating and standing frame.

This equipment quite literally changes her life, and we are so grateful to have it.

However, with the joy of new equipment also comes sadness.

The seemingly never-ending need for expensive, complicated, ‘special’, equipment is a constant reminder of what Miss Z can’t do.

It is a reminder that she needs additional help with even the most basic activities in life and will never enjoy the independence and mobility that her sister takes for granted.

And the equipment also medicalises her (if that is even a word) – it makes her everyday routine feel very institutionalized when I have to rely so heavily on specialist equipment.

And it keeps her at arms length from the rest of the world.

Her stroller is supportive and stable, but it also makes it difficult for her to interact closely with other children and more or less impossible to reach out to touch something in front of her.

Her standing frame keeps her comfortable when she is standing upright, but with a large base, it also prevents her from getting too close to anything or anyone.

And her new bath, which enables her to continue to safely take a bath, also means that baths with her sister will stop – a ritual we’ve had more or less since Miss Z was born.

I am so grateful to have the equipment we do – it transforms Miss Z’s world and gives her opportunities that would otherwise be closed to her.

But with the joy that these opportunities bring, there is always sadness that we need them at all.

#BarefootChallenge

Emma Hodges is the mastermind behind this thought-provoking challenge that’s really gaining momentum on social media.

Emma is a mum to two young very busy boys.

She has worked at a special needs school for children with physical needs for 13 years and has helped many families in the home environment.

Last year, she took a job as team leader for Alfie who is 9 years old and has Cerebral Palsy.

She has known Alfie and his family since he was a year old. Alfie’s mum, Samantha Buck is a well known name in campaigning circles and recently presented at the first Changing Places conference.

Samantha campaigns in many areas to improve access for disabled people today and for future generations.

The Changing Places campaign is Samantha’s main focus.

Changing Places toilets are different to standard accessible toilets (or “disabled toilets”) as they have extra features and more space to meet the needs of people who use them.

‘I have seen the massive impact the provision of appropriate toilet and changing facilities can make to a family’, said Emma.

‘It can make or break a day out, having the right facilities when they already have so many other things to think about, toilet access shouldn’t have to be one of them.

I also used to plan the school trips and it was very limited to where had appropriate toilet facilities so the children could have comfort breaks and I found that very disheartening.

Being able to use a toilet or access a changing bench to have personal needs taken care of is a basic need.’

Emma and Samantha had been discussing ideas on how they could help spread the word about Changing Places and really make the general public aware of this very real problem faced by special needs families and people with disabilities.

‘We wanted it to really make you think about how you would feel, get the public involved and encourage people to sign and share the petition.

I said we need something that can be shared through social media, like the ice bucket challenge.

So the #barefootchallenge was born! I thought many people wouldn’t take part if we said you had to do it in public toilets (but amazing people are!!) and that really is the point if you can’t even put your feet on a public toilet floor, how is it allowed and still happening that we have to lie a disabled person on a floor.’

Although Emma came up with the idea a few months ago she has been waiting until the right time to launch the challenge.

With the help of The Unmumsy Mum Facebook page the challenge was launched last week.

Families of disabled children and adults are already well aware of the challenges of attending to the personal needs of their loved one on a day out, however the aim of this campaign is to raise mainstream awareness of the difficulties encountered and highlight to businesses, decision makers, policy makers and politicians the real need for Changing Places and better provisions of Spaces to Change with adult height adjustable changing benches and overhead hoists in existing venues.

Firefly Garden’s Space to Change Campaign awards businesses who make practical changes to their existing toilet facilities to better meet the needs of special needs families this can include replacing the existing baby change unit with a height adjustable adult length changing bench, providing a large private space for changing where existing disabled toilets are too small.

For more information on how your business could adapt it’s current facilities get in touch!

Please sign the petition to show your support.

The petition has received an additional 1500 signatures since the launch of the #BarefootChallenge.

Start a #BarefootChallenge by taking a photo of you own bare feet beside a toilet.

Then, share it on your personal Facebook Page using the #BarefootChallenge or via Twitter with the #TweetYourFeet .

Don’t forget to nominate at least 3 friends to take the challenge on!

Keep up to date with the challenge on the Bare foot Facebook Page.

Top Five Ways to Create an Awkward Moment with a Special Needs Parent

Here are five ways people have created an awkward moment for us by something they’ve said or done:

One

Peer over our son’s stroller, who has poor muscle tone and preferred turning his head to the right as a baby, and say hello.

Snap in his face and turn his head yourself saying, “I guess you don’t want to look at me, huh?”

Two

Walk right up to us at the state fair, look at our son in his stroller, and ask us if he has a disorder of some kind. (Really?!)

The woman did go on to explain she has a granddaughter with cerebral palsy and worked with children in hospitals years ago.

This can be a startling question, however, when you aren’t expecting it from a complete and total stranger.

Three

Ask if we have seen a such-and-such doctor….neurologist, physical therapist, naturopathic doctor, etc.

Of course we have!

We want our son to get the best care, medical attention, intervention, and plan of action as possible.

Four

Ask how old our son is, and upon hearing he is two, go on to tell us about what a fun age two is.

They really start to express themselves, show their personality, and on and on and on.

This is a tough situation as a parent of a child with special needs because you don’t care to explain everything to them, and you aren’t quite sure what to say.

So far in our experience we have seen that people just assume everyone has healthy typically developing children.

They mean well, but don’t consider the fact that or son may not be expressing himself, running around, and wearing us out like someone else’s two-year-old.

Five

Make comments about our son being a little snuggle bug, so tired, a sleepy little guy, not quite awake yet, etc.

Because of our son’s low muscle tone it’s very difficult for him to pick his head up when we carry him, so he typically has his head on our shoulder, thus putting him in a position where he looks like he’s going to sleep.

What I really want to say to people following their comments about this is, “HE HAS A MITOCHONDRIAL DISEASE AND CAN’T PICK HIS HEAD UP!”

But that would be awkward, wouldn’t it?

The Special Needs Homeschooling Movement

It is quickly becoming a preferred method of schooling for children with special needs.

We took a closer look into why we’re seeing this new shift in how children with special needs are being taught especially in light that most families find inclusion a very important part of what they want in their child’s life.

There have been some growing concern with tragedies that are reported in by news media.

A story involving an older child with special needs whom inadvertently was left on a bus, which cost him his life.

Parents are fearing they will send their children off to school and not see them return home.

News reports of bus drivers getting so lost that they are driving special needs children around for over four hours without reporting in to anyone.

Reports of children with special needs being abused by teachers and staff are becoming increasingly more common, which has created the push behind the drive to have cameras in all classrooms.

Social media is filling quickly with graphic and heartbreaking photos of children who have suffered not only emotional injuries but in many cases severe physical injuries.

Some of these injuries even inflicted by peers without adult supervision or intervention.

And then the continued increase of school shootings in reported all across the United States.

No school-age seems exempt.

Children and teachers incorporating into their routines emergency plans and parents are fearful of where that leaves a child who is confined to a wheelchair and has no where to hide.

Special needs parents who also have a medically fragile child also are leaning towards homeschooling as a way to detour and filter out unnecessary germs that could take aim and cause further health complications for their child.

A common cold could turn into a life-threatening illness during cold and flu season which is quickly passed from one child to another.

Some parents state that their child simply is overwhelmed with a school setting and is unable to handle the sensory challenges associated with a classroom full of other children.

Thereby, creating the need to provide a learning environment for them at home which doesn’t overwhelm or over stimulate their child.

Exhaustion over IEP meetings that result in plans not being followed, and their children failing to be included.

Parents no longer wishing to fight the school system, they turn to homeschooling as another way to eliminate added stress in fighting a system that they cannot change.

And now with new proposed laws in California aimed to force vaccination even upon children with special needs who may already have compromised immune systems and neurological challenges just to be able to attend public school, has parents searching for other alternatives in homeschooling to preserve their child’s rights and what they feel is in the best interests of their child.

No matter what factors are that are the causes of this shift, it’s important to take note that parents are having to make harder and harder decisions regarding the avenues that they are pursing for their child’s educational needs.

Special needs families choosing to take the homeschooling route should be offered continued county services in-home, be offered ways to partake in field trips with their peers as they deem necessary and fit, and most importantly not be judged for their homeschooling decisions for their child.

With this growing trend, it is exceptionally important to share special needs homeschooling resources within the special needs community.

If you are a homeschooling parent what resources, sites and curriculum do you find most beneficial?

When An Airline Hurts Your Child’s Wheelchair…

In some cases we got lucky and it was merely cosmetic damage.

In this last trip his wheelchair was actually crushed rendering it useless at the gate.

Each time regardless of the amount of damage, I think my jaw actually hits the floor.

How can airlines be so reckless with equipment that is worth thousands of dollars?

Sometimes I wonder if they think they can bank on the fact that we’re really in a travel rush and only have sometimes a limited amount of time to get to our next gate or destination that we’ll miss the claim filing window deadline and they won’t have to be held accountable for their mishandling of these precious pieces of equipment.

I’ve tried everything.

Traveling with a wheelchair that folds down, taking off all accessories that have the potential of being damaged and putting them in a carry-on bag, taking a one-piece wheelchair…and mind you I’m terrified to even consider the power wheelchair.

No matter how I go about it, they just cannot spare any wheelchair we take.

Thankfully, on our last trip we had arrived home and just had to find a way to tote our non-ambulatory son over one shoulder, keep track of a wondering typical child, drag a broken wheelchair and seven bags of luggage and medical supplies and two carseats through the airport to meet our ride home.

Still we were left with the fact that we didn’t have a functioning wheelchair.

Although I was thankful it happened on the way home and not on the way to our destination I thought there has to be options for those of us dealing with severely broken wheelchairs as a result of an airline while traveling.

What do we do in the interim while we’re attempting repair or in many cases replacement?

I’ve learned recently that sometimes it all depends on the airline you are flying.

While all made good on damages and repairs they all had a different approach.

With British Airlines for example you simply report the damage and ask your local DME (Durable Medical Equipment) provider for a price quote on the damage.

The airline will send you a check in which you turn over to the DME or cash to pay for the repairs.

Southwest airlines for instance contracts with a company called Global Repair Group.

They step in after you file a damage claim and will coordinate all the details of your repair or replacement for you, right down to sending their own technician out to your home to evaluate damage and to conduct all necessary repairs.

Global Repair Group will also coordinate the use of a rental wheelchair in the interim should your wheelchair be deemed a complete loss and require full replacement, as it did in our case.

And I highly recommend their services.

A rented wheelchair was overnighted by way of Fed Ex, and then picked up after the new wheelchair had been custom built and replaced.

The rented wheelchair is then again picked up by Fed Ex at your home and shipped back.

I wish I would have had this crucial bit of knowledge on my previous flying experiences with our child especially should we have been in a different state or country without a functioning wheelchair as a result of an airline’s abuse of a wheelchair.

Now that’s not necessarily going to help you get out of the gate or terminal very easily – especially if you have a custom wheelchair with specialized supports, but to know that your trip may not be completely ruined entirely without having a functional wheelchair.

If you are traveling with a wheelchair don’t hesitate to ask an airline who they work with in advance in the event that there is wheelchair damage, it may influence your decision on who you chose to fly with depending on how they go about handling any potential damage that could occur.

And no matter what in the end make sure you take a deep breath, because if you’re anything like me it can make your heart sink and your stomach drop when they bring that wheelchair up to the gate crumpled…

Special Needs Parenting: Three Cheers for the ‘Low-Maintenance’ Friends

There’s no doubt that the lives we special needs families live don’t fit into anyone’s frame of, ‘normality’ – except ours, of course.

If you’re lucky enough to have friends with high needs children themselves, there’s a level of deeper understanding that’s like a breath of fresh air.

We recently went to the birthday party of one of Charlie’s little friends from her special preschool.

It was such a lovely experience.

All of Cam’s toys were appropriate for Charlie, I didn’t have to explain any of her behaviours, and his extended family were wonderful.

His Grandad came to offer Charlie some food, holding out his hand and waiting with a patience born of experience for her to tell her hand what to do.

It really was the most incredibly eye-opening thing for me.

Better yet, their family lives very near to us, so I’m hoping we’ll see more of them over the coming months.

In more general terms, though, I don’t have any, ‘special needs family’, friends.

I’ve been lucky enough not to lament this loss, since our circle of friends has been nothing short of amazing.

I find myself thinking a lot about this lately, because one family of our particularly close friends has just moved overseas and I know our lives will be very different as a result.

Our youngest children are the same age and have grown up together, so there’s never been anything less than total love and acceptance for Charlie and her needs.

There’s never been any pointing or staring to deal with; they just ask questions immediately as they think of them.

Extended ‘family’ gatherings at parks or swimming pools together have always given us a protective bubble of normality despite our obvious differences from the crowd.

So here they are, three cheers for these brilliant friends who are more like family:

Hip hip, hooray!

I love the fact that we can sit in a room together, chatting and laughing, while I’m performing some ‘special needs’ task that other people might run screaming from.

Better yet, these friends are the kind who would happily roll up their sleeves and do it for us, never missing a conversational beat.

Hip hip, hooray!

They’ve been the friends we can really tell the truth to, ones who love Charlie almost as much as we do and, because of that, they’ve cried with us as well as laughing at – or making! – the most inappropriate jokes without offence.

Hip hip, hooray!

Thanks for all the no-effort babysitting – we’ve been able to drop kids at their house with only the clothes on their backs and they’re fully prepared and ready for anything.

They understand Charlie’s needs and signals better than anyone outside the immediate family and they don’t mind when she makes an enormous mess.

Bon voyage, Tempelmans!  We’ll miss you!

Raising a Child with Special Needs: “I’m Sorry for becoming an Introvert.”

With my mind clouded with sleep deprivation and stress, I made the decision that this was easier on the people I treasure most.

This does not mean I don’t want you to share your everyday lives with me.

Whether it’s a new career, vacation, night out on the town or something your children accomplished, I want to hear it all.

I just know that sometimes when you ask how things are here, you wind up feeling guilty for the great things that are happening and I don’t want that.

Don’t get me wrong we have plenty of happy and fun days but when you ask how things are going I am leaving a lot out of our conversation.

I know all Moms can drive themselves crazy worrying about how things will play out in their children’s lives and none can predict the future but the thoughts and worries of a mother with a special needs child can be brutal.

When I lie down at night and try to drift off to sleep I worry like everyone else how school will go this year and what my sons will be like as teenagers but then my mind will focus on my Matthew.

Buddy (that’s Matthew’s nickname his brother gave him) will be turning 4 this year, he was born with a deletion of his 5th chromosome which has caused a developmental delay.   I constantly worry about what’s going to happen when he gets older.

He is happy, adorably cute and making progress but he still has a long way to go.

Will he ever talk? Will he ever walk on his own?

What happens when he isn’t a toddler and people stop thinking he is cute, will they start being rude to him?

Will he make friends, have a girlfriend or get to be involved with school clubs?

Will he ever get to be just a normal kid that is included in birthday parties and play dates?

Sometimes my thoughts turn selfish too and that makes me feel even worse as a mom and a human being.

Will Matthew always be dependent on me?

Will he ever get to live alone?

What if I have to change his diapers forever?

It’s hard enough to ever get anyone to babysit for us now, we will ever get to go out and enjoy adult time again?

I hope that maybe all of the people I care about can understand why I am so quiet lately.

Just typing these concerns out makes me cry and wish that I could shut my brain off.

I know that no one has the answers to any of these crazy questions and I don’t want anyone to feel they need to say, “I’m sorry”.

What I do know for sure is that when Matthew smiles at me and holds on to my hand, all of the worries melt away for a while and he reminds me not matter what at least we have love and hope.