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!

Advertisements

I Could Hate Autism…but

I could hate autism tonight.

I could hate the fact my son has caused so much damage to my house again, both in financial terms and in emotional terms. Things of sentimental value smashed, toys broken, floors flooded, window blinds torn. I could hate the fact he has screamed for hours on end in frustration and anger and attacked anyone who came near him. I could hate the fact his sibling is having to deal with all this and live in a volatile situation she has no control over.

When the child who has caused the damage has a diagnosis of autism I could hate autism so easily, but I don’t.

Many would argue, and I would have done so in the past too, that my son’s autism is to blame for tonight. It was his rigidity of thinking and inflexible thought processing that were the triggers. It was the fact he could not control everything and his sheer need for set routine that started it all. It was the fact his communication needs are so high and he was frustrated at not being able to verbally say what he wanted. It was his lack of social awareness and inability to understand others viewpoints that meant he caused thoughtless damage to other’s property. Everyone of these things are key traits of autism spectrum disorder after all, so surely autism was to blame for it all?

Autism isn’t why my son is violent. Autism is not always the reason my child has meltdowns and screams.

There is more to my child than autism.

There is more to anyone than autism.

Let me be clear: autism does not make people violent. I do not hate autism.

Am I upset about my evening and the damage that was caused? Yes very much so. I am more upset, however, at the fact people will see tonight as something fundamentally down to severe autism. Severe autism does not mean a child will be violent. I can not stress that enough.

Let me say this: my son is 9. Yes he has autism. Yes he has no verbal communication. Yes he has learning difficulties and other complex needs. His challenging behaviour IS linked to his complex needs and these do play a factor in what happened tonight but they are not the full story.

I could hate autism but I don’t.

Instead I hate the fact I misjudged my son’s level of anxiety to the point I let him get to the stage of full meltdown.

I hate the fact my tiredness and frustration meant I never showed my child the patience and understanding he needed.

I hate the anxiety and frustration my son felt because his world felt so out of control and unordered because I never ran his bath at 6pm when he felt I should.

Autism was’t to blame for tonight: I was.

My son is a vulnerable child. Whilst he does need support to learn to wait and be more gentle (as does any child,autism or not, and many adults too!) he also has a right to be understood, be listened to and have his needs met regardless wether he can speak or not. I am the adult in all this and it is ME who needs to change and mature not him.

Do you know something…my son could have had a bad night, been frustrated and had a challenging evening even if he didn’t have autism. He is a 9 year old boy with developing hormones, a growing body and determination like any other child. We all get angry and children need space to be forgiven and grow as much as we all do. Have I ever wanted to throw something in temper at times? You bet I have. I have just learnt as an adult that there are better ways to deal with anger. My son just needs time to learn that too. Autism and learning difficulties may mean that takes a little longer and it’s my job to be more patient during that process.

In all the chaos of tonight, in all the broken toys, wet floors, and smashed items I found my son had done this on his bed. A line of cars to remind me how beautiful, ordered and perfect autism is.

I could hate autism but there is nothing about autism to hate.

Just to add I ran that bath, apologised to my child and we made amends. Yes he has autism and learning difficulties but his laughter, his energy, and his forgiving spirit know no bounds. One of the most amazing things about his autism is he will wake up tomorrow with no agenda, no grudge and a love of life that makes everyday wonderful.

I could hate autism but I love my son far too much for that.

I Don’t Want To Be An Autism Parent Anymore

*Preface: have you ever felt overwhelmed with life? I have. Of course I love my son with all my heart, I should never need to even justify that, but living with a child with severe autism is hard. I do not need threats made to my life or my child’s because I find some days hard. Comments like that will not be approved.

And for the record I don’t always feel like this but I am human and some days this is exactly how it is. *
The day started far too early. There was no sweet cuddles in bed or a little voice asking for a drink; no I was woken as usual by screaming. I have had day after day, month after month, year after year of being woken by screaming and I don’t want that anymore.

I don’t want to wake up to a smell that would make you want to vomit and bedding that is fit for the bin more than the washing machine, because yet again it is covered in something that ought not to be seen by anyone else. I am so tired of that now.

I don’t want to sit on my couch in the middle of the night looking at my child and wondering what I did to have a child who sees no point in sleeping, who at 8 still can’t say ‘mama’ and who still thinks the world revolves around his needs only.

I love him more than words could ever convey but I don’t want to be an autism mum anymore. 

I want to be a mum who has fun with her child rather than doing therapy with them.

I want to walk my son to school and talk to his friends instead of sending him in a taxi to a place where I am a stranger to them.

I want to be able to talk to my child about the fact it is his birthday soon and discuss what he would like to do to mark that day.

I want to be someone who takes my child to bowling, teaches them to ride a bike or even goes to the movies with them. Instead the only place I ever take him to is hospitals or respite.

I am tired of missing out on everything. I am tired of never having party invites, knowing nothing about his day at school, having to still dress him, having to take adult nappies and wipes with me wherever I go.

I don’t want to be an autism parent anymore.

I am tired of holding my child as he screams in public again.

I am tired of the never ending judgement, the stares and the horrid comments.

I am am tired of carrying around my broken heart as a result of the interventions and therapies having achieved nothing.

I simply can not bear the thought of my child as an adult knowing what society is like.

I am tired of meetings.

I am tired of phone calls from his school.

I am tired of fighting for everything but then being accused as having an attitude or people thinking I act like I am entitled. 

I don’t want my child to have autism anymore. This is not a ‘different way of seeing the world’ that he has, or ‘a wonderful gift’. This is a child about to be 9 years old who can not say ‘mum’ or use a bathroom himself. This is a child almost my height who still can’t put his own clothes on, brush his own teeth or dry himself after a bath. This is a child who can never ever be left alone, who has to have everything the same all the time, who self harms and wanders. This is a child still with the mind of a toddler who will require others to look after him his entire life.

Who would want that for their child?

Who would want that as a parent?

Today I don’t want to be an autism parent any more.

The problem is I have no choice.

So I strip that bed, bath that child, cook him that breakfast as I always do and let him sit on my knee while he rewinds the same ten seconds of video on you tube he did yesterday and the day before that and the day before that.

Nothing changes much in my house, except my feelings. 

Today I am tired. I don’t want to be an autism parent today the same way any other parent may feel about not wanting to be the mum of a toddler who tantrums daily or a baby who has reflux or the partner to someone with Alzheimer’s. We all have days when we are just down about the life we have.

Yet we carry on. We dust ourselves down, search for some positives or listen to some music.

Tomorrow is a new day. It will probably start off with screaming again too., but maybe tomorrow I will be stronger, more hopeful, more upbeat.

Maybe tomorrow I will want to be the autism parent I need to be. 

Maybe tomorrow. 

Ten Seconds That Prove You Should Never Underestimate A Non-Verbal Autistic Child. 


People don’t expect much of my son. 

Speech and language therapists have all but given up on him, encouraging me to just accept he is non-verbal with limited understanding.

School take him on ‘environmental excursions’ rather than reading and writing because…well he can’t hold a pencil despite having been in school for four and a half years so he is never going to read and write is he?

The learning difficulties mental health team wrote to us explaining his challenging behaviour and long spells of screaming are just part of his complex diagnosis and are unlikely to change.

The public looks down on him in distaste.

Children his own age mock him in parks and soft plays when they see he can’t talk and is still wearing nappies.

Even as his mum I sometimes find myself wondering what the future holds.

It is easy to understand why. My son has a long list of diagnosis all of which are life-long conditions. He development is years and years behind what is ought to be and he requires support for all his personal care. He is a non-verbal severely autistic 8 year old who is still very much living in his own world. 

Well that is what I thought too. That is until I happened to turn my iPad video recorder on this evening while he was playing with his iPad. What I captured changed everything.

He had been handing me his iPad on and off for the last half hour. He was pressing the ‘google’ app wanting me to type things in to let him scroll though images. It was exhausting trying to guess what he wanted to look at with no eye contact, no words to tell you and no clues. In the end, frustrated myself, I handed him the tablet back and said ‘Isaac google something?’ I never for a minute even thought he would understand let alone google something so incredible it had me in tears:

He clicked on the search button and within seconds he pressed the ‘i’, quickly followed by ‘s’, then without hesitation he pressed the ‘a’ right beside it twice, before pausing for a few seconds then finishing his search with a ‘c’. In total it took less than 10 seconds for him to prove you should never underestimate anyone!

He just typed out his own name and I had no idea he even knew it let alone how to spell it!

The speech therapists may be right about him not speaking but he clearly understands far more than they realised.

School thought he would never be able to read and write…well he may not be able to hold a pencil cold but he just wrote his name using a keyboard on an iPad so who know what else he may be able to type?

The learning difficulties health team may be right about his behaviour being part of his comprehensive and complex diagnosis but what if so much of it is frustration at understanding but unable to communicate back?

Maybe this ten second video may help the public see that you can not judge anyone by lack of speech or lack of eye contact or lack of social skills. 

It only took my son ten seconds but in that ten seconds he has proved to so many that we must never, ever underestimate anyone, especially those with non verbal severe autism.

Does my son still have difficulties? Absolutely. Should I ‘not expect too much of him’? Never!

Behind the flapping, you tube on repeat, screaming exterior is a brain hard at work piecing things together in his own way in his own time. 
People don’t expect much of my son: I do. He just showed me why.

How My Severely Autistic Son Used YouTube To Speak To Me


Isaac loves his iPad. It is with him from the moment he wakes until the second he goes to sleep. He has a few games he likes and he really enjoys looking through the photos but his all time love is YouTube.

He is pretty typical of many 8 year old boys in that sense. However there is something very different about Isaac: he has no spoken language at all. Isaac has severe autism as well as other complex medical issues and he has poor eye sight. He can not read or write and certainly can not type into a you tube search bar. He fumbles his way through you tube by clicking on random videos and spends most of his day flapping in delight at lift doors opening and closing over and over again.

When Isaac does listen to songs they tend to be very random or theme tunes of favourite programmes aimed at very young children like ”Peppa Pig’ or ‘Wooly and Tig’. He rarely allows anyone else to touch his iPad so he has to go on ‘rabbit trails’ through lift videos or episodes of Wooly and Tig to find anything different. Due to the nature of the video playing app he tends to be faced with a fairly limited repertoire but this has suited him immensely due to his need and love for repetition.

I am not afraid to admit I often struggle to parent my son. He gets frustrated (I absolutely understand that) and that can lead to hours of screaming or throwing himself down the stairs or hitting and pinching people. He has severe phobias of things I can not control like open doors or other children (including his sister) eating and drinking. His life has to be the same all the time which makes living with him quite restrictive. He is not toilet trained nor can he care for any of his own needs. Some days I get very low and I question ‘why us?’ My faith has been taken to levels of testing I never knew existed before.


Then one night last week I stopped what I was doing and just sat beside my son. I longed to hold him but I knew he would attack me. My love for him was overwhelming yet I was unsure if he even knew who I was. I sat beside him on his bed and I could feel the tears building at the back of my eyes. I have not been able to take him to church for weeks now because of his outbursts and his inability to cope with the slightest change. Had God forgotten about my child? Did my son have any idea of the world around him or how much he was loved? I was weeping for my child. My heart was broken both for myself and my son.
In that moment I heard words that seemed to come from God himself. A male voice I had never heard before. The words caught my heart before my brain even fully processed them..

 
“Don’t weep for me…”

What? My son was looking right at me smiling. He knew who I was and not only did he love me but he had something to share with me. He moved closer to me as his finger pulled the scroller on the you tube bar back to the start of where he wanted it to be…

Somehow, I believe from God himself, my non verbal severely autistic son with limited eyesight and no ability to read or write, had found a song on you tube that was saying everything HE wanted me to know…

Don’t weep for me, God made me this way. He’s chosen not to let me speak, but I hear every word you say…

Because the pieces of many colours symbolises what I am, it represents the hope of a cure that lies in God’s own hands” 

He pulled that bar back to the exact spot again and again as those words washed right over us both.
I was weeping for a child I thought I had lost but here that same child was showing me more than his own words ever could in a way so powerful, so emotional and so spiritual it was like God himself was in that room. 

I can not explain how he found that video. I can not explain how he understood those words and related them to himself. I have no logical explanation to the timing of me arriving in his room and him finding it or the fact he would scroll right back to the start of that chorus time and time again.
We sat there together for what felt like hours. The words of that song healing places in my heart I had not even realised were broken.

 
It was an experience I will never forget. My non verbal severely autistic son with complex medical and developmental needs brought me to tears by using you tube to communicate something I will never forget. 

Isaac can not speak to me but God can use any means he wants to give him a voice. That day he used you tube and this song.
Have a listen to what my son wants everyone to know:

 

Four things my severely autistic son has taught me


Having a baby is the most wonderful, humbling, exhausting experience I have ever known. I thought it would be a challenge but I would learn and gain so much.

 
Then one day my baby was diagnosed with severe autism.

 
Everything I had ever known about parenting suddenly changed.

 
I went from being the teacher to becoming the student and despite my son having no ability to speak he has taught me more than any speaker, any book or any course every could.

 
Here are five things my severely autistic son has taught me about life:

 
1. If you enjoy something, repeat it! 
All too often in life we are told to ‘move on’ or ‘grow up’ or ‘you are too young for that!’ My son has no concept of age appropriateness nor is he affected in any way by peer pressure. He enjoys a ride on a train to the same station to see the same elevators over and over again. He watches the same videos on you tube over and over. He presses the same button of the same toy repeatedly and still laughs.

IMG_1391

 

Isaac has taught me that if something fills your heart with joy never be ashamed to relive that. Life is to be enjoyed over and over and over again. I need to go back to finding joy, just like him, in the simplicity of life over and over again.

 

 

2. Stop worrying about other people!
Isaac has no awareness of others. He is not afraid to get on a roundabout even if a group of older children are in his way. He is not afraid to flap, spin, laugh and clap even if others don’t join him. Bullying goes right over his head. Comments from others don’t affect him. He could not care what he is wearing, where others are going or wether he is included or not. He does not aspire to be politically correct nor does he want to lead the crowd. Instead he is blissfully content being who he is, exactly how he wants to be.

 

I want to be more like that.

 

Life is not about doing what everyone else is or pleasing others. He is different, and happy to be so, and there is a lesson there for all of us.

IMG_1126
3. There is other ways to communicate without using words.
I talk far too much. Most of us do. Isaac can not talk at all so he relies on other, much more basic ways to communicate. He sits beside me if he wants a hug, he screams if he is unhappy or scared, he takes my hand to lead me, he finds photographs of things he wants.

 

To most his communication is too basic, too rudimentary, to learn anything from. They are wrong. Speech is not a ‘higher’ level of communication but rather a way to communicate that is actually too easily misunderstood. We can say we are happy yet our body language says otherwise. We can say we love when we actually don’t. My son simply shows me in beautiful and simple ways. They say actions speak louder than words and perhaps we all rely way too much on spoken and written language when a simple hug or smile would convey much more?

 
4. Don’t worry about the future, just enjoy today!
Isaac has no concept of ‘future’. He lives in the here and now and at 8 is just about coping with the basic idea of ‘first and then’. He has no worry about politics, or religion or current affairs. He has no concerto of wars, shootings or terrorism.

 

He lives in the moment.

 

He eats food and enjoys every item with no consideration for cost or sell by dates. He is as content to eat an out of shape vegetable from a low cost supermarket as he is eating out in an expensive restaurant. As long as he gets to eat he does not care! He never stresses about money or where it will come from neither does he desire anything of any real value. He will play with a coat hanger flapping it for hours without any idea that most would view it as trash. While we may not be quite as able to ‘live for the moment’ as he is we certainly could learn from his care free lifestyle and worry much more about today than the future. First today, then tomorrow could be a motto for us all.

IMG_0933
Isaac will most likely never read, or write or live on his own. Does he care? Not an ounce. He has zero idea about toilet training and he is not in any way worried what anyone thinks about that. He wakes up every morning happy. He laughs at the same you tube clip that he laughed at yesterday, and the day before, and the day before that too! He drags me to the cupboard for food and is neither brand aware nor cost aware.

Life is simple. Life is fun. Life is about today. He dances to his own beat and I am proud of him.

 

He brings me delight every day. He has so much to teach us.

 

He may be severely autistic and non verbal but the world is a better place for having him in it. 

 
People tell me he needs to be more like us. I disagree. We need to be much more like him. 

 

IMG_1466A version of this blog first appeared here