To The Parents Of The Disabled Child Who Doesn’t Look Disabled

Dear fellow parent,

I understand.

I understand what it’s like to be in the park and others wonder why you are sticking so close to your child, perhaps guiding them or supporting them to do what other children much younger are doing easily. I know what it’s like to see parents and children stare at your child, laugh at them or worse…walk away from them.

People would understand if your child looked different, if you were pushing them in a wheelchair or if they had a walking frame. I see your child’s disability even when they don’t look disabled.

I understand.

I have a child just like that too.

It’s the expectations isn’t it. They look fine so why are they not talking like others expect, acting age appropriate or joining in with others? The assumption that ‘looking fine’ means they are ‘fine’ and that we are the issue not the child. Oh do I understand that!

Our parenting is questioned just because our child doesn’t ‘look disabled ’ whatever ‘looking disabled’ is even meant to mean? People think we are over protective, over bearing and causing the problem. Yet they don’t know what we know. They don’t see what we see.

They can’t see autism so they don’t know it’s there.

They can’t see global delay or learning difficulties so they must not exist.

They were not there when you received the genetic diagnosis so they don’t know.

They haven’t experienced the epileptic seizures so therefore you must have made them up.

They don’t know anything about the myriad of specialists you have visited or the volume of appointments your diary is full of.

They see your child and make assumptions based on the fact they look ‘normal.’

I understand.

You dare not mention that your child receives disability money. You know from experience that you will be accused of using your child to get money.

Why? Just because your child doesn’t ‘look disabled’ so therefore according to society they can’t be disabled.

I understand.

You see I have a child like that too. I get the sideways looks when I hold my almost ten year old tight as we walk. I hear the sniggers as he flaps and makes baby noises as we walk down the supermarket aisle. I know the judgement at the school gate when my child is the different one yet he looks just like any other child.

For some reason disability is meant to be noticeable or else it must not exist. People have this strange notion that if something can’t be seen then it must not be believed.

I know how that makes you feel because I feel it too.

We should not need to justify our child disability just because they don’t look disabled as people expect. It shouldn’t matter what someone looks like and people are so quick to judge.

So know you are not alone.

Know that I understand.

I am right there with you.

You do what you need to do for your child and know I support you.

Together we can raise our beautiful disabled children who don’t look disabled and hopefully one day others will understand too.

Yours lovingly,

A mum of a stunning but very disabled little boy.

This blog originally appeared here

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Adding Epilepsy and how it has changed things for my beautifully complex child

It’s quite a bizarre feeling when a medical professional finally tells you what your gut already knows. I mean if you already know it why does it still send your stomach into knots, make your head feel like it will explode and fill your eyes with tears? Maybe knowing something inwardly but hearing it outwardly isnt quite the same.

Whatever it is, the day I finally heard the medics say my son has epilepsy was just like that.

It shouldn’t have been a shock, but hearing it still made me numb.

I should have been prepared, but hearing the words still felt unreal.

I had already googled it so many times so why did I suddenly google all over again when I heard it ‘officially’, desperately believing that the information I read would somehow be different?

Knowing something inwardly doesn’t ever prepare you for hearing someone else say it after all.

So my son has epilepsy.

It’s not like this is his first ever diagnosis. He collects diagnosis like some people collect coins or stamps. He’s a beautifully complex child who already has a list of conditions that would scare even the monsters under your bed! Severe autism, severe learning difficulties, neurofibromatosis type 1, microphthalmia, Persistent Hyperplastic Primary Vitreous, optic glioma, global developmental delay and now epilepsy. It’s a mouthful. We tend to shorten it to ‘isaac’ and we encourage everyone else to do the same.

So here he is.

Isaac. My beautifully complex son who now has epilepsy.

Despite so much against him Isaac had been doing well, though I guess that always depends on what you mean by ‘well’. He was attending school, he was eating and drinking and, now and again, sleeping. He was happy, energetic and full of life…until March this year.

I didn’t see it coming. Yes he has had minor seizures, or episodes before. He has been having absence seizures for years and had EEG’s several times. He has, like all children, caught various bugs and minor illnesses but despite the fact he has no speech at all I could tell right away when he woke on the 4th March that something was seriously wrong. In fact I had to wake him that morning which I can’t remember ever having to do. He spend the day like this, only walking to have what I knew was some sort of seizure then sleeping again.

I sought medical advice. I was told it ‘probably won’t happen again’, except it did. Again and again in fact. Each time lasting longer, adding more adjectives to describe what was happening and scaring us all more.

Until finally in July this happened.

One minute Isaac was sitting eating breakfast, the next he collapsed unconscious onto the floor, his whole body tense and writhing and his arms and legs shaking uncontrollably. A three and a half minute tonic clonic seizure. A four hour sleep followed by a second three minute loss of consciousness, rigid body and shaking.

And so we added epilepsy to his complex needs. We added medication that week too.

Medication has been awful. If we thought the epilepsy was bad the medication was even worse! My son became a shell of his former self, lost deep in a world of lethargy, nausea, confusion and distress.

I was told ‘it will pass’. It didn’t.

So we stopped that medicine and started another. This time he is more alert but the lethargy, agitation and mouth ulcers have caused him so much distress. It’s utterly heartbreaking.

He’s not at school much.

He’s not doing much.

He’s not eating much.

He’s not really interested in much.

Life is one huge effort for him right now.

Adding epilepsy to my beautifully complex child has not been easy; thats an understatement.

And the hardest part of all of this is he can’t understand what’s happening at all and I can’t explain.

I have never felt so helpless as I do right now.

Coping With Worry As A Parent To Children With Complex Needs

One Sunday three months ago things changed in my family. Up until then I always worried about my non verbal severely autistic son but it was mostly around his inability to be understood, his challenging behaviour and what his future might be like. That changed on the 4th of March when I found my son face down on his bed semi conscious. He has just had a seizure.

That day he went on to have three more seizures and he slept on and off all day, not eating but at least having small amounts of fluids. He was referred to neurology though he already attended. An emergency appointment took 8 weeks but finally on 23rd April he saw the neurologist and an epilepsy nurse. She wanted an urgent MRI as Isaac has NF1 which causes tumours to grow on his nerves and a previous scan had shown Isaac had a tumour on his optic nerve.

However before we even had a date for his MRI on the 15th May I had a call from Isaac’s school to say he had arrived sleeping and had been sleeping all day and semi conscious. I immediately knew he had had another seizure. He was not home ten minutes when his eyes began rolling, his arms shaking and his mouth foaming. There’s general vague worrying for your child and then there is urgent medical worry. Once again it was confirmed by a doctor he was having some sort of ‘episodes’.

A week ago today he finally had his MRI under general anaesthetic. It’s his fourth one and I am worried. If his tumour has grown then chemotherapy is an option. If the tumour is stable we could be looking at epileptic medication. The future is unknown.

Yesterday Isaac had another episode in the park. He was violently sick this time. His sister was terrified and it was very challenging getting him safely home.

Things have changed. While I try to stay positive and keep my faith it is hard not to worry. How do you cope with worry when your child has complex needs?

I decided to reach out to some friends to ask how they cope with worry.

Charlie (whose son was having surgery the same day Isaac had his MRI) told me: ‘I try to stay busy when he’s in surgery and I remind myself of the reasons we’re doing this and the benefits rather than what might go wrong. It’s always a tense time and even though I keep my mind busy I’m physically exhausted as soon as he’s back safely with me. (www.ouralteredlife.com)

Steph (who writes at http://www.stephstwogirls.co.uk) had this to say: ‘All I can really relate to for this is when Sasha was in hospital for those 10 days three years ago. She had to have a CT scan rather than an MRI but there was other stuff to worry about, like her leaky valves… I guess I just tried not to think about it but in reality what I did was suppress it all in order to be as matter of fact about it all with her as I could be and prepare her/keep her calm.’

Lisa said ‘I don’t always realise I have been worried until after the event and then it feels like a weight has been lifted. I’m a massive over thinker but tend to have a positive outlook for the most part. Sometimes things haunt me afterwards…post trauma?’ (http://www.alifelessordinarywithautism.wordpress.com)

Cara (http://www.lylasangels.co.uk) told me: ‘I don’t worry, it’s like i go numb and just go through the motions. Before Lyla’s hip reconstruction last year a friend asked me how I felt about it and I went through my spiel about knowing it was going to be a tough recovery etc and he said yes but how do YOU feel? And i didn’t have an answer because I had no idea how I felt, I felt nothing really about her actual operation. She’s been under GA a couple of times before that for mri’s and I wasn’t worried or anxious, just numb.’

Maxine (http://www.downinfrintplease.blogspot.com) told me how running helps her cope: ‘Oh absolutely the running is my saving grace. Especially because I am always trying to fend off injury so there is such total granular focus on posture, cadence, breathing and there is no room for anything else in my thoughts for that blissful time. The outdoor space is open overhead so nothing visually pressing down on my shoulders. I am utterly free from it all when I run, and ever so much more able to cope thereafter. I also don’t pressure myself for times or even to run all the time (I take regular walk breaks) so it is only about the freedom and ‘me time’. If I don’t have it I am a wreck from trying to keep track of everything. I can’t imagine coping without it.’

Gemma (http://www.islasvoice.co.uk) uses humour to cope with her worry. ‘I am mostly numb and I hide everything with humour.Most of the time I try not to think because I know when I do my worrying consumes every bit of me.Luckily we don’t have any health stuff to worry about.Instead I wonder why everyone has discharged a severely autistic child and she has no support. I worry I’m a shit mum. I worry I should be fighting more. I worry she’s not getting everything she needs and should be getting. I worry about what will happen when I’m no longer here. Then I start laughing and joking and in my head it’s all good but I know it’s denial. It’s how I get through each day.’

Sally, who blogs at http://www.hunterslife.co.uk told me how her son helps her with her worries: ‘If I start worrying about all the things that I should be worried about – all the unknowns about the future (or lack of it) – I drown. So I try to take my cue from Pudding more and just live in the moment. Not very good at it but it’s a heck of a lot better than thinking about the alternatives.’

Jeanette finds crochet helps: ‘I use distractions here. My brain over-thinks all the time so I either distract it with a bit of crochet or some music (can’t do the latter if not on my own). The “having to concentrate on stitches or you’ll screw it up” really helps, that and being around others who “get” if you might be quiet. (Www.autismmumma.com)

Julia confessed to how anxious and worried she gets: ‘Noah had 3 anaesthetics in under 7 months. Each time I carried him to the room and held him till he was under. I buried the fear deep. Buried the worry. He needed me to be strong. I focused on him as a patient sometimes, rather than my little boy. I put my nurses head on as such as it was the only way I could cope. As he slept I’d talk to my sister in law about him. She’s also a nurse and it helped me get through it all. I still have nightmares about those months. He only has to cough and burning anxiety starts climbing up my body.’ (Www.bloomingautism.com)

Lucy (http://www.revelationsofaslummymummy.blogspot.com) is much more pragmatic about it all: ‘Bizarrely, I worry about not worrying enough. I’m a very pragmatic person, have had mammoth amounts of trauma previously. Anyway, I just cracked on, partly as a survival mechanism and partly because I knew no different. For me, that works, but I always wonder if my pragmatism perhaps leads to complacency with Brecon. He seizes every day, and it’s just life. He bites, pinches and scratches me everyday, and it’s just life. I really really hope my approach doesn’t lead to him being less efficiently cared for or me being less proactive in terms of getting him what he needs.’

Finally Anne from http://www.fainbowsaretoobeautiful.com told me: ‘I worry all the time. I find the best thing I can do is try and ‘park’ worries for a while. Realise I’m worried about something but let it go with the knowledge I’ll return to it in a while – whether that’s a few hours, days or months.’

So we all worry. My coping mechanisms right now include swimming, praying and of course writing.

One thing I do know though is that worry won’t change anything. Everyday is a fresh day and a chance to start again. And right now everyday Isaac doesn’t have a seizure is a bonus. Thankfully we have many more seizure free days than we do seizure filled ones. As for the MRI…well I will share those results as soon as we know!

And Isaac? Well he is flapping, smiling and laughing through it all. He isn’t worried about anything at all!