What I Want You to Know on World Cerebral Palsy Day

It is estimated that 1 in 400 babies born in the UK have a type of cerebral palsy.

Figures indicate that with the birth rate in excess of 700,000 per year there may be as many as 1,800 new cases of CP in children each year (source)

I am proud to be Mum to a very determined little boy who has cerebral palsy.

William, now 8, suffered from a lack of oxygen prior to his birth which resulted in severe brain damage and a diagnosis of CP.

Cerebral palsy is a condition which affects people in many different ways.

William is at the most severe end of the scale and his CP affects his muscle control in his whole body resulting in him being unable to sit, stand, walk or talk.

He has no control over his body and cannot make many purposeful movements.  But despite this he is one of the happiest children you will ever have the pleasure to meet.

He is a very determined little boy who rarely lets his frustrations get the better of him.

We try and make sure he lives as full a life as possible and whilst he cannot do some of the things other 8-year olds do, he still has great fun and always has a smile on his face.

His disability has opened my eyes to the many barriers faced by people in the UK who have cerebral palsy and there is one major barrier preventing my son, and thousands of other people with CP (and other disabilities) living their lives to the full.

When William was little, and until he was about 4 years old, we were able to go out and about without much thought for where we were going and how long we would stay.

Sure, we had to pack special meals and make sure we had enough nappies and a change of clothes, much like you would with a baby, but it was do-able.

All that changed when he became too big and heavy to put on a baby changing unit.  Suddenly we were forced to face the sad reality that people like our gorgeous son seem to be invisible to much of society.

That can be the only reason their needs haven’t been catered for when it comes to public toilets.

By public, I don’t mean council funded toilets, I mean ALL toilets available to members of the public.

To date there are only 1,033 toilets in the whole country which William can use, to put that in perspective there are 600 public toilets in The Shard alone (and William cannot use any of them).

I, naively, assumed that when William was too big for the baby changing room we would simply use a disabled / accessible toilet.

After all, he is disabled so it would make sense these toilets would meet his needs.

But, as you’ll know if you have ever snuck into a disabled toilet, the only differences between these toilets and a ‘normal’ loo is the addition of handrails, a lower sink and (sometimes) a bit of extra space.

But William cannot stand up.  He can’t sit without support and he can’t use his arms to transfer himself onto a toilet, and he will never be able to.

If you cannot transfer yourself to the toilet then you’re going to need some help, either from carers or (ideally) a hoist but have you ever seen a hoist in a disabled toilet?

Luckily, William is still pretty light (22kg) so I am able to lift him onto the toilet, but once he is a fully-grown man I will have no hope of doing that and will rely on a hoist to help me.

But before I can lift him onto the loo I need to remove his trousers, he can’t stand up so my only option is to lay him down to do this.

Have you ever seen anywhere suitable for me to do this in a disabled toilet?  It pains me to say the floor is our only option.

Toilet floors have an average of 77,000 germs and viruses so that isn’t somewhere I fancy putting my son, not least because he has a low immune system, something which is common amongst people with CP.

These days, if we want to go out as a family, we have to ensure that we are going somewhere which has a ‘Changing Places’ toilet in case William needs the loo while we are out.

He may not have developed many skills over the years but he does understand how to use a toilet.  He is not happy to ‘mess himself’ and I wouldn’t expect him to simply because he is disabled.

Of course, this means our days out are limited.  Either in where we go, or how long we can stay.

I have lost count of the number of days out that have been cut short because there was no toilet available.

Shopping baskets I’ve left in the middle of the supermarket without paying as I’ve had to return home empty handed when William was desperate for the loo.

Invitations I’ve turned down because I know there won’t be anywhere for him to go for a wee.

Many large businesses and services are not willing to provide such facilities regardless of the need (at least 1 in 260 people in the UK need a changing places toilet – according to Clos-o-mat) and until they change their stance Williams (and therefore my) world will remain limited.

He can’t go to the cinema, have a day out or even do the weekly shop with me (he’s probably relieved about that!)

Cerebral Palsy is not a condition you can prevent or cure, it is for life and it affects people in diverse ways.

But one thing that remains the same for everyone with this condition, is the need to empty the bladder and bowels.

Changing places toilets are the only place that offer a safe and dignified solution to do that.

This World Cerebral Palsy Day I want you to know how difficult it is for disabled people to find a usable toilet in the UK, and maybe help to do something about it.

World Cerebral Palsy Day 2017

October the 6th is world cerebral palsy day… a day to acknowledge, appreciate, celebrate, and most importantly raise awareness for this neurological condition.

We are almost 4 years into our deep relationship with the world of cerebral palsy and I still have so much to learn.

When we were first given Amy’s diagnosis at 10 months I was told “Amy is a little girl who will have significant mobility issues”… all of the words spoken that day still churn around in my head every night as I try to get to sleep.

I try to think of how else it could have been phrased… if I would prefer the news be delivered in a different way. The answer really is no.

There is no easy way to hear that your child is going to be drastically different from the one you first envisaged when you saw your first pregnancy scan.

It takes a long time to digest and process information like this, I think in a lot of ways I am still learning, and re-learning.

I thought I’d use this post as an opportunity to share with you some of the things I have learned about cerebral palsy.

I think it’d be cool if everyone could leave some comments about what they have learned on their journey too.

1. First and foremost. If you have met a child with cerebral palsy you have done just that. You have met ONE child with cerebral palsy.

CP manifests itself in all sorts of different ways. Just because your neighbours’ friend’s cousin has CP and can walk does not mean that my child will also learn to walk.

What makes all of us different makes us beautiful and each person with cerebral palsy is just like everyone else… we all have different challenges, hobbies, abilities and so on.

2. Not enough people understand what cerebral palsy is. A lot of people who meet us don’t really understand what it means… before Amy I also didn’t really understand what it means.

My favourite way to explain it to people is that the brain controls the muscles differently and that this can affect speech, learning, posture, movement and so on.

I think the key to acceptance and inclusion is understanding. I really wish that we were taught from a young age to embrace difference and to continue with that ethos in to later life.

3. Cerebral palsy can be acquired in different ways. For us it was hypoxic ischemic encephalopathy. Amy was born starved of oxygen from aspirating meconium.

HIE can happen from things such as placental abruptions, cord compression or entanglement, all sorts. In some cases it is preventable, or in our case… inevitable.

I have since met people who had a brain bleed, a stroke, fluid on the brain and so on.

There is no one way cerebral palsy happens, it can happen to anyone. It is not contagious, it is not to be feared.

4. My daughter is not “wheelchair bound”. I have said this before and I will say it again… her wheelchair is her freedom and her access.

Of course I would (and she probably would too) love her to be able to move independently, but it is what it is, so the best thing to do is make sure you access the community the best you can and have the sweetest wheels in town.

So many people feel negatively about disability and they pity her.

My main sadness for Amy is the pain she often feels from muscle spasms or feeding issues… but when it comes to her wheelchair and feeding pump I am grateful that these technologies exist to keep her alive and give her a way to explore the world around her.

5. Standing frames are not so your child can learn to stand! I did at one point think this. I realise now this was a bit naive and over hopeful!

It is to help with bone density, muscle building, weight bearing, postural support, aids motility/digestion and all sorts.

Learning about all of the different pieces of equipment and their purpose has been a huge deal for us. There is so much more to physio than helping someone become mobile.

It’s about preventing hip and back issues, protecting bones and muscles and so on.

6. I like to raise awareness! I love when people get the confidence to ask questions and learn.

A lot of people may stare… or go the opposite way and look away from us, but we love when people either just interact with Amy like they would any other child… or they satisfy their curiosities and go away knowing more about the different people that surround them.

Everyday seems to feel like a learning curve. Amy is due her first orthopaedics appointment soon. This is an appointment I have been anticipating for a while.

I wonder if her dystonia has worsened her hips, I wonder if her spasticity could be better managed than it currently is, I wonder if her physio interventions we do at home are enough, I wonder if the ankle foot orthotics are sufficiently helping her legs and feet.

There is so much left to learn.

I have dedicated a long time to just trying to understand tube feeding and the various ways we can help Amy increase her weight and receive ample nutrition; I have also spent a lot of time looking into different ways to help her communicate.

It is amazing how cerebral palsy can transform your life for the better and force you to view the world from a different perspective…

Even if it does mean constantly emailing companies asking them to improve their wheelchair access and changing facilities!

Special Needs Parents: The Calling

I haven’t really talked about it with anyone but maybe mentioned a few things to my husband here and there.

To be frank, I can’t even figure it out myself, and it seems to be ever changing.

It is a tug and a pull into wanting to do more for myself, more for my family, and especially more for my son Oliver who was born with a lifelong diagnosis.

Before, I used to stay at home with Oliver while his older brother Aaden went off to school and my husband Aaron went off to work.

Life was plenty busy with all kinds of appointments and learning to be a new mother in general.

When I met Aaden, my step son, he was five. Life did not require changing diapers, feeding every three hours, nor the countless sleepless nights a baby brings.

I took it all in stride and eventually the sleepless nights tapered off, the feedings grew further apart, and the diapers… well no, the diapers still needed changing every three hours. Lol.

As we cleared more appointments with good results, those eventually grew further apart as well. Only needing check-ups every 6 months or year.

Life became… a bit of a bore. I had all the things in this world to teach my son of course, but growing up as independent as I did, I wanted more for myself.

I wanted to be of more help, financially at least, to my family. I had always had a job and I was soon going on two years without one.

But as much as I tried, it just was not in the cards for me to be able to go out and work and have my son somewhere where he could be watched safely and with all the extra care he personally needed.

I basically couldn’t have my cake and eat it too. I, one of the very few, luckily came across a legitimate opportunity to work from home helping out a friend and her Etsy store. Almost a year later, I still help run the shop for her!

Yet this nagging feeling has since returned. EVEN though my life grew busier by a job and a new little addition to the family.

A family of three boys now, my husband and I work and I finished a few classes even at the community college.

I know and pray I will eventually be shown which path to take, and I know it can be different then what my future ultimately will hold.

I just want to do more for the community of disabled children and adults, I want to finish nursing school, I want to extend my writing abilities, I want so much more!

I know this life of mine is meant to be full and of endless opportunities, I just have to take them one step at a time.

When Your Autistic Child Does Not Have Impulse Control

Before I got him out the door he HAD to switch the light switch on and off a few times. He HAD to touch every car parked beside me. He HAD to slam his door shut even though I reminded him to close it gently.

He HAD to turn my radio on before I could make sure his seatbelt was fastened and then as I drive he HAD to open and close his window despite me asking him not to.

If he sees something he wants to do he just can’t stop himself.

Once I park the car he HAD to slam the door shut again..despite being told not to. He HAD to push my wing mirror in even though he saw me watching and he HAD to run despite the fact I held onto him tightly.

You have already decided I need to discipline him more.

You have already deemed me an unfit mum.

You have already no doubt branded him ‘naughty’.

In actual fact my child has autism and he also has absolutely no impulse control whatsoever. The latter is what makes raising him the most challenging.

In the shop if he saw a wonderful neatly stacked display on the shop floor his instinct would be to knock it over like a tower of bricks.

He would then laugh so wildly at his antics while I meanwhile would want the floor to open up and swallow me whole!

No amount of warnings, being punished or talking to him works. For some children on the spectrum impulse control is just something that they will never really gain.

They live in the moment. They can’t always predict danger or what might happen.

Their sensory needs are so overwhelming they take precedence over what you and I would see as common sense. They see and they do.

At home if I make myself a cup of tea my son just itches to knock the mug on the floor. He simply can’t NOT do it.

It is incredibly frustrating but part of his challenges and something we have all had to learn to live with.

I could smack my child every single time (for the record I would never dream of doing this) and still he would never learn impulse control. He just doesn’t have it yet, end of.

He will punch and slap his sister with no understanding this hurts. He may cry later when given a row but he will just go right back and do it again and again.

Without impulse control he can not use self control to stop himself.

If he sees an open window he has to throw something out it.

He HAS to go into every toilet and put taps on. The sensory fulfilment this gives him overrides completely any fact that I consistently tell him this is not allowed.

I may as well be talking in a foreign language because even if he understands later that it was wrong, without impulse control he will still do it again and again.

He can not see an open door and just leave it. No, he HAS to go close it…even on someone’s face!

If he sees buttons he HAS to press them regardless where we are!

Books shops are a disaster as he gets great delight from knocking them all down like dominos. Buffets are hard as he can not self regulate the amount he can actually manage to eat.

Food shopping is a huge challenge as without impulse control he would think nothing of picking up the fruit on display and eating it!

If he helps me push the trolley (as a means of containing him) he thinks nothing of ramming everyone in sight.

For the record he is disciplined, he is taught right from wrong just the same as his sister.

What people need to understand though is until a child is cognitively ready to understand the consequences of their actions there is only so much a parent can do.

It is also worth remembering that many adults also struggle with lack of impulse control in areas of eating, spending and alcohol consumption for example and they do not have the level of difficulties my son has.

I am doing my best but one things is certain and that is: no matter where I take my son it will be obvious to everyone that he clearly lacks impulse control.

I hope it is just as obvious that until the penny drops for him I will continue to teach him and guide him as best as I can.

It just may take much longer than I would like.

Special Needs Families: My Son and His Service Dog

When he came to live with us he’d had extensive, ongoing training.

My husband and I attended four days of intensive training with Ewok to learn his commands and have his trainer pass the baton to us.

The update? He’s an awesome dog with impeccable training and he already adores our son.

Once we got Ewok home, it was time to work on reinforcing his bond with Sebastian. This morning when Sebastian got on the bus to go to school, Ewok wanted to go with him.

I think our reinforcements are working!

Each morning Ewok bounds up the stairs to greet Sebastian while he’s still in his bed.

Ewok sleeps in his crate downstairs. Eventually he will sleep in his own dog bed in Sebastian’s room. Sebastian kicks his legs in excitement, loudly vocalizing and smiling, anticipating their reunion.

I move Sebastian from his bed to my lap on the floor, or in a chair, and he gives Ewok a treat. Then Ewok cuddles up next to Sebastian so I can help him pet Ewok.

It’s the best part of a very busy morning in getting ready for school. As I see Sebastian’s face beam from his happiness with his new buddy, a rush of emotions overtake me. My heart is full.

Having a dog in our home is a new experience for our family. And Ewok is not your typical dog.

He’s been trained in specific commands and he will continue to learn more to assist Sebastian.

In addition to his commands, I have him come to Sebastian when he is upset and help Sebastian pet him, which immediately calms him.

Ewok gives him kisses and then lays at his feet, as close to Sebastian’s wheelchair as he can get.

When Ewok arrived, we put him in a down-stay command next to Sebastian during meals and other times so he would get used to being with Sebastian while practicing the command for longer periods of time.

This was to help him know that his place is with Sebastian, but also build his stamina in down-stay so that we can go out to a restaurant or a doctor appointment with Ewok.

Already, Ewok is choosing to lay near Sebastian without being commanded to do so.

To continue with Ewok’s training and retaining the training he’s had, I have taken him out on adventures each morning, such as a ride in the accessible van to the grocery store, farmer’s market shopping, and posting a parcel.

Sebastian has one day a week in which he does therapies instead of school, with part of that time home with me.

This will also allow him the opportunity to go on adventures with Ewok too and reinforce his training.

This past Thursday we took Ewok to the library, on an elevator, and then browsed and checked out some DVDs.

Over the weekend we took him to a busy farmer’s market as a family and on a hike where many other dogs were present.

Ewok has to heel next to myself or my husband, his lead attached to Seb’s chair. He has to ignore dogs, kids riding by on bicycles, and people purchasing food. He’s doing it!

As Ewok’s handler, I have to be ‘on’ at all times. I have to make sure he’s following commands and not paying attention to people, noises, dogs, or traffic.

I’m definitely more tired by the end of the day than I thought I’d be! But we get to have fun too. I toss the ball to Ewok in the back garden, while Sebastian watches from the porch.

We have to make sure he doesn’t get excited around Sebastian but we also have to make sure Ewok gets the exercise he needs and the down time from working.

When we are out, he has his vest on and he is working; sometimes that could be hours. When we get home, he usually takes a big nap!

Sebastian’s sister has loved seeing how Ewok has connected with Sebastian, ‘oh that’s so cute,’ I hear her saying when Ewok is giving him kisses or sitting next to him. She also struggled at first, ‘I bet Sebastian loves petting Ewok; he looks so soft.’

She has taken on the task of filling Ewok’s water bowls and loves helping with the ‘pooper scooper,’ a contraption that has a long enough handle so Seb can help too. We help Sebastian fill up Ewok’s food dish and he gives him plenty of treats.

I know that she will help others understand that Ewok is a working dog while we are out and I imagine her helping Sebastian tell other’s about him too.

So far, that’s been my job while his sister spends most of her time trying to ignore Ewok. She understands that he needs to bond with Sebastian. And as she sees it happening, it get’s easier to do.

Ewok has toys and bones that he has moved from his crate downstairs, to his dog bed in Sebastian’s room.

After Sebastian left for school today and we went upstairs, he went in to Seb’s room and to his bed to look for him.

Watching him attach to Sebastian is an amazing feeling. And it’s just going to keep getting better.

Special Needs Parenting: Happy?

An introvert adolescent and the youngest of three, I spent plenty of time alone growing up. I didn’t mind.

I liked reading. I liked thinking.

I very clearly remember saying to my mum when I was about four ” but what is a human being?”

The philosophical thoughts of a preschooler are enough to make most parents shudder, but I’m not convinced my thoughts have moved along much.

The main problem of having a mind of your own is that you have no one else’s internal workings to compare it to. Your normal is the normal.

When does being a loner, a thinker, a ponderer, tip over into something pathological?

Are all introverts depressive?

In an attempt to resist over thinking this I’ll tell you how it is in the grimy recesses of my brain.

Depression to me is hard to explain and harder to admit to. It colours other people’s perspective of you.

Go to the GP and I believe a little flashing link appears on the case note screen.

”I think I’ve torn a ligament Doctor” “And how long have you been on the antidepressants Mrs. Scott?” (I exaggerate but…)

I have long felt that any bad health I experience, physical or mental is a character failing.

If only I worked harder, ran faster and was an all-round better person, I would not experience this thing.

As my excellent GP really did say “you are extraordinarily driven”

Well duh?! Through sheer force of will I can, I will, be better!

Oh dear, that definitely sounds like the workings of a depressive brain. Couple that with the fact that I think I’m probably putting it all on. A double whammy.

Also, if I’m not depressed I’m happy. I don’t really do in between. I feel things extremely intensely, or I’m depressed when I don’t really feel anything at all.

In the absolute grip of it I long, long, for it to be over.

So what is it?

An absence of feeling. An abundance of desolation. A loss of appetite for food, drink, touch, smell, life.

A deep hole which seems impossible to scale the walls of. A heavy sadness in my very bones.

An utter and total loathing of myself, and a certainty that my family, my friends and indeed the world in general, would be better off without my draining existence.

Where does it come from? I know it comes from a lack of serotonin. I know that. But how, and why, and where has my quotient gone?

Does somebody else have my measure? Is my happiness so happy I spent all my serotonin on a good day? Where does it go?

I lie some mornings in bed, sniffing the air. Is it here? Has it gone? It’s gone! I leap up! Oh. No. Still there.

On days like this I would amputate my own arm with no anaesthetic if someone told me it would make that thing, black dog, cloud, slough of despond, go away.

Sometimes I sense it creeping up on me. If there are too many hospital appointments or LA fights, I keep my wits about me and take action before it settles in.

Occasionally its stealth amazes even me. It quietly whispers into my unconscious brain “you’re worthless” So quietly that it becomes background unquestionable fact.

Most of all it lurks invisibly. People don’t see it in me, I keep it well hidden. Well would you go out in public if you felt like that?

Recently I’ve been naming and shaming. Get it out there in the light, show it up for what it is, in the hope it will burn up and fade.

Mainly at the moment I thank Big Pharma for the little white pills. They contain the right dose of my elusive serontion. I have hated them, I have resisted them, but now I welcome them.

Just now, right at the moment they help. They can’t solve my problems but they can smooth over the rough edges and help me muddle along.

Isn’t that all that any of us can really do?