I Used To Worry About My Autistic Child’s Future Until I Met An Adult Just Like Her

All parents worry about their children: Will they make good healthy choices? What if they get hurt? Will they have friends? How will they cope with handling money? Will they be safe?

It’s standard parenting really to worry.

That worry is amplified if your child is autistic. You worry even more about them misunderstanding language, making friends, and being independent because they are more vulnerable and different to their peers, and because society isn’t yet as accepting and embracing of difference as it should be.

I worry about both my autistic children but for very different reasons.

My son is profoundly autistic. He is, however, likely to have the support he needs throughout his life because his needs and difficulties are very obvious to people. The fact he has no spoken language, he has significant medical issues and severe learning difficulties on top of his autism mean that my worries for him are more about will he carers look after him, will he be understood, will he be respected and so on.

With my daughter, who is also autistic, but who has no accompanying medical issues other than anxiety (which is huge and I would never underplay that), and certainly no learning difficulties, my worries are very different. I worry about people taking advantage of her when she is socially naive to their motives. I worry wether she would manage a work environment with her unseen and often misunderstood sensory difficulties. I worry that her communication difficulties and social anxiety will mean she is isolated and unsupported. I worry that her naturally caring nature and very tender heart would mean she is vulnerable to bullying and cruelty.

I try to never let her see my worries but they are always there. When she struggles with change at school on days like sports day or comes home in tears because she had been unwell and unable to tell anyone. When her anxiety is so high she has panic attacks and nose bleeds and I am powerless to make everything right.

She worries about everything and I worry about her.

Then I met Tom on a social media group. I say ‘met’ him but he was a stranger posting on a group both by commenting on posts relating to my daughter (and other posts too) and writing his own posts. Very quickly to us both it became obvious that Tom and my daughter had so much in common. Examples included little things like the fact:

1. They both preferred to sit on hard surfaces like the floor instead of traditional furniture like armchairs and sofas. Naomi spends hours a day, often all day, playing on the floor. It turned out Tom does that too but as an adult to relax in other ways like watching TV.

2. Naomi really struggles with needing personal space. She builds barricades out of toys to create circles around her that no-one can enter. Tom struggles with personal space at work in a similar way.

3. Naomi takes language literally timing me for example if I was to say ‘I will be back in a minute.’ Tom was struggling with the same thing and mentioned misunderstandings at work and with his family due to the same literal understanding of language.

4. I mentioned in one post that Naomi was terrified of flies, wasps, bees and any other small flying creatures. Tom was reminded of the time his parents told him he was so scared of bees he refused to get out the car.

5. Both Tom and my daughter would rock to self soothe.

I could go on but the resemblances continue to grow the more Tom posts about his life and the more he reads about my daughter.

Coming across an adult who is so like your child is incredible. It gives me hope when I once had worry, it excited me when I used to fear and it inspires me when I was once disheartened.

I know Tom isn’t my daughter, but with so many similarities I feel we were meant to meet to ease my worries. You see Tom is independent, he has a full-time job, he has friends, and though he struggles with isolation at times he never loses hope and he never stops trying. Of course he still has struggles but he did well educationally and he has achieved in so many ways. He lives the sort of life I hope my daughter might have one day but yet I worried wether it would happen.

Tom only found out he was autistic as an adult. My daughter was diagnosed aged 5. Tom doesn’t live in the same country either and his family life and dynamics are different. Yet the similarities are just enough to make me feel encouraged. What is even more important though is that hearing about Tom is helping Naomi.

While my daughter isn’t on social media yet I have been telling her about Tom. She is amazed at the similarities (have I mentioned Tom even shares her birthday?) and so encouraged to hear that while he may have some struggles (don’t we all, autistic or not?) he is achieving, happy and doing well.

She may never meet Tom but that doesn’t matter. We don’t have to meet people in person to be encouraged or inspired by them.

My daughter will one day soon be an autistic adult. Hearing about an adult just like her has been life changing for us both.

Thank you Tom.

I used to worry about my child’s future until I met an adult just like her.

If only every autistic child could meet an adult just like them too. Believe me when I say it really is life changing.

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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!

Where does it hurt?

Gwynne - 20151003 -29 - highWhere does it hurt?

Every so often I get a rude awakening that my seven year old is not like other seven year olds. Today was one of those days.

The doctor sat in front of him smiling. “Hi, when did you start to feel unwell? Can I listen to your chest? Where does it hurt?”

Questions doctors ask all the time. Questions a seven year old should understand, have a reasonable ability to answer well and have the verbal ability to communicate to a stranger.

My son continued playing his game on his iPad obvious to us all. At seven he is non verbal.

He is different. But today he was the same as everyone else in that centre. He needed medical attention. He could not wait for his regular doctor to reopen. He was unwell.

And once again I had to be his voice. As best as I could. I can not say how he is feeling. I can not say when he started to feel unwell. So I told them what I could. And that is all I ever can do.

I find myself over analysing everything. Was that behaviour he displayed a few days ago the first sign he might be poorly? Did he not finish his dinner yesterday because he felt sick? Is he sitting in my knee because he is looking for comfort or just because he wants to? How am I supposed to know?

They say a mum has a ‘sixth sense’ but this goes beyond that. When you live with a child who can not communicate the most basic of things such as pain you walk a tightrope daily. I could worry about every bruise, (where did he get that? Has he fallen and I never noticed?) every cut, (is that stinging him in the bath, what caused that and should I find it and remove it in case it happens again?) and every behaviour gets dissected like a science experiment. I become more of a detective than a mother. Or do I just let him be a ‘normal’ seven year old and be content that he is not screaming or being sick today?

My son lives with a silent invisible medical condition. But his autism makes it impossible to know how that condition is truly affecting him.

I could panic every time he is sick. I try not to. A wise doctor told me that statistically despite having a progressive genetic condition he is still more likely to have a common childhood illness such as an ear infection, a chest infection or a virus. As true and as logical as that is I still live with the worry he could be ill because of something much worse.

He has a high temperature and neither the doctor nor us know why.

Where does it hurt?

Well right now I can tell you where that hurts for me. It hurts my heart. And just as there is no cure for my sons condition, there is no cure for my hurting heart either.

Why can’t they take away his tumours?

I try not to think too much about my child’s medical condition. His classic autism I can deal with (well most of the time anyway), even the fact that at six years and six months old he has no language is just about bearable. The fact he has global delay and has the understanding of a young toddler is hard, but something that might improve. But when I talk about the fact my child has this condition called neurofibromatosis type 1 my heart still breaks, even though we have been living with it for over two years now.

This is not easy to write about but if it helps just one person then I feel I have to talk about it.

This handsome boy, full of life and energy and mischief, has a body that keeps making tumours!

imageAnd there is absolutely nothing I can do about that!

You see I know about autism. I can sit with him and work on that. He might never speak but there has been huge investment in autism and so many resources available. I can use the internet to access photographs, or even take some on his iPad that he can have instant access to. Then there is picture exchange communication that one day he may be able to understand. There is also makaton and British sign language. He can take me by the hand to things he wants and we can help his socialisation skills by taking him to a wide variety of places and hopefully in time introducing basic social stories.

I know he will always have autism. But the likelihood is he will improve, even if not by a lot.

I know about his global developmental delay. We can work on his physical skills, one day eventually we may even be able to toilet train him, and in time he may be able to use cutlery, wash himself, dress himself and learn basic life skills. Children with global developmental delay, especially to the level of Isaac, may never catch up with their peers but he will improve, even if he always needs support.

But his neurofibromatosis type 1? Well that is just another thing altogether!

I am educated and willing to learn. I know about the physical features like his large head, his skins marks (cafe au lait marks because they look like coffee stains) and his small height. I know that some of his learning difficulties is also due to his NF1 and that genetically he inherited the gene from his father. I see glimpses of how his body may look as he ages by looking at my husband. We know he will most likely get freckles under his arm pits, his cafe au lait marks will increase and grow, and he will most likely have fibromas (small tumours on his skin). Those are all things we can cope with. And I am sure Isaac will cope with them too.

imageimage imageIt’s just the unknown. The fact that when you say to people he has tumours the first thing they say is ‘does he have cancer?’, followed by the inevitable, ‘why can’t they take them away?’. That’s the hard bit. No he doesn’t have cancer, for which we are incredibly thankful. But he also can’t be cured. And should he develop certain tumours on his spine, or eyes, for example, he may one day require chemotherapy. But unlike cancer, there will never be the option of no longer having tumours.

He will always have autism. He will most likely always have global delay (although that may change to learning difficulties as he ages) and he will always have neurofibromatosis type 1. But unlike the others his NF MAY be stable, mild and not require treatment or it may throw up hurdles we don’t want to even think about. Of course we hope and pray for the former and reassure ourselves this is how it has been for my husband.

Why can’t they take away his tumours? Sadly he would just produce more. And more. And more.

Do I want a cure for autism? Sometimes when I have tough days and my son is not able to be understood and is frustrated yes. When I spend longer watching lift doors with him than I do sleeping some weeks? Maybe. Would I like a cure for his global delay? Partly, but then he is slowly achieving things and I know in his own time he will get there. Would I like a cure for neurofibromatosis? Yes I would.

But then I look into these big brown eyes and I think I couldn’t possibly love this boy any more than I do. And I know whatever the future holds…well we’ll get through it…one lift at a time!
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