The Life Of An Autism Sibling


In the back hall of a church she watched as her brother climbed a toddler slide. As he sat at the top of the slide flapping he lost his balance and fell off. He was shocked and shaken as he laid there confused and hurt.

While the adults checked him over his sister ran around the room looking for all his favourite teddies, then sat beside him stroking his hair and whispered: You are ok. Don’t be sad. You are ok.
She is smaller than her brother, weaker than him physically, and much more timid in nature.
Yet she is strong. 

She is the sister of a child with autism and that is something very special. 
She copes with screaming and has learnt to be a peace keeper.

She copes with a brother who is controlling and she has learnt to compromise.

She copes with a sibling who rarely sleeps and she has learnt to rest as and when she can.

She copes with the unfairness when her sibling does not understand rules and she has learnt patience and maturity beyond her years.

She copes with aggression and responds with peace.

She copes with his iPad on full volume and responds by showing him how to plug in earphones.

She copes with people staring at him and she smiles at them and puts her arm around her brother in support.


She copes with getting less attention than she deserves and has learnt to play herself to cope.

She instinctively knows and understands now when he is experiencing sensory overload and leads him to a quieter place.

She opens snacks for him because she knows he does not have the co-ordination to do it himself.

She has learnt that he can not join in her games and copes with that disappointment better than many adults would.

She fights her brothers corner.
She keeps him safe.

She changes the TV channel when he screams at a show he does not like.

She even makes hand dryers work for him because she knows how much he likes them.

The life of an autism sibling is not easy. They are often over looked and expected to cope. They miss out on so much because of the needs of their sibling and have to adjust to family life dominated by an invisible condition. A lot is expected of them beyond what other kids deal with.

It takes strength to cope when your brother screams daily. It takes strength to understand certain toys can not be bought because they pose a danger to your sibling. It takes strength and maturity to realise and accept that having friends around to play may be more difficult than it is for others.

To watch your brother or sister struggle with something you do easily and not boast about this, to stand up for your sibling when others mock them, to cope with public meltdowns and not be embarrassed: you are amazing! 
Let’s hear it for the autism siblings! You all deserve the lime light for once!

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How setting up a just giving page changed things for my family.

Most of us find it very difficult to ask for help. It is often seen as a sign of weakness in society and a sign that you are desperate.

Recently I found myself asking for help for that very reason; I was desperate.

I had to let go of my pride and allow others the opportunity to support me.

 

Gwynne - 20151003 -33 - highWe were going through a time of crisis as a family as my son’s MRI results showed upsetting results with his eye sight. As well as autism my son has the genetic condition neurofibromatosis type 1 and a routine scan showed one eye has microphthalmia and his other eye has an optic glioma. Both are very significant conditions that require long term care and close maintenance and both can leave him blind. Currently one eye has next to no vision already.
He is non verbal with classic autism. He has global developmental delay and sensory processing difficulties. He has severe learning difficulties. Life is not easy for him.

My daughter also has autism and huge anxiety. She has mental health struggles and an eating disorder.

Both children require a lot of support and I am a full time carer for them.

My sons challenging behaviour and my daughters anxiety meant they would both benefit enormously from a room to relax and chill out in. We were regulars at special needs places and I knew both of them loved visiting sensory rooms. I wondered if having one of our own would help them.

I looked into costs, funding, ways to build one and equipment that would benefit them both. The financial costs made me cry. Even with funding support it was impossible for us to build a sensory room on our own. Then I came across just giving.

I hesitated.

Was it right to ask others to support us when there are so many other good causes out there? Could I swallow my pride and allow others to help? Would anyone even care?

Almost reluctantly I set up the page and put it on my social media. As people began to give I cried again. With every donation I wanted to hug people. Every email notification on my phone make my heart skip a beat.

Just giving showed me people cared.
Just giving showed me we were not alone.
Just giving enabled people who don’t even know us to invest in my family.
Just giving reconnected me with friends and relatives I had lost contact with as word spread and my image was shared.
Just giving made my dream of a sensory room for my autistic twins come true.

By the end of the 30 days our target was not only met but exceeded. We had a custom build shed made and installed and ordered the equipment with excitement and gratitude.

 

It IS making a difference. More than I ever imagined it would. Every single penny given has been used and has changed my family.

When my son is frustrated he has somewhere to go and calm down that relaxes him and excites him.
When my daughters anxiety gets too overwhelming she has somewhere to go to destress away from people and events that overload her.
It has enhanced and developed their relationship and brought joy to my entire family.

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The room will grow with them and change to meet their needs as required.

 

Instead of crying we are now dancing together. We are more relaxed as a family thanks to every single person who clicked ‘donate’ on our page.

Just giving changed my family. It was hard to let people help but so worth it.

Asking for help is not a sign of weakness, it is really a sign of strength. Never be afraid of letting others help make your dream come true.

Just look how happy my children are in the sensory room.

Thank you to everyone who made this possible.

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Never before has a tray of pasta meant so much to me

imageNever before has a tray of pasta meant so much to me

I could so easily write a negative post. Life is anything but a field of roses right now but right in the midst of pain and struggles a little kindness, a hint of love, or even a tray of pasta can change things!

This post is dedicated to the manager of a pizza restaurant local to me. I will be printing out a copy and hand delivering it to her this week.

I need her to know that never before has a tray of pasta meant so much to me.

imageMy children are struggling. I try and disguise that but I can’t. In the last month my son has endured some difficult medical test including 24 hours of wires glued to his head:

And a few weeks later having to have anaesthetic for an MRI to identify where all his tumours are growing inside him.

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For any child these things are a real challenge but when you can not talk, have limited understanding and have a diagnosis of severe autism and neurofibromatosis these things just seem so much harder; for the child and the parents.

As well as this he has had to cope with a change of teacher at school and beginning overnight respite. He has been brave but in turn we have had to deal with some challenging behaviour.

For his twin sister these procedures and the ensuing changes to her schedule have been so upsetting and disorientating. End of term changes at school, a wobbly tooth and her friend being off school have made everything seem so much worse. This all causes one major difficulty: when stressed Naomi stops eating. Really stops eating.

Isaac loves his food. Anything edible is the highlight of his day. Among his many favourite foods are pizza, salad and garlic bread. One of the very few things his twin sister will eat is a certain pasta from a pizza restaurant.

Sometimes as a parent you do what you need to do to survive.

As much as I try to hide it it is very obvious even to a stranger that my children have struggles. Yet in this particular restaurant we always seem to be welcome.

By now you may have guessed what happened. My daughter broke her self imposed stress related fast and picked at her favourite pasta. As I took her brother up to the buffet the manager spoke to me with a smile and said she noticed my daughter only ever ate the pasta so she would go put more on ready for if she she wanted it. I wanted to hug her.

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Never before has a tray of pasta meant so much to me.

I had to say something because by now I was emotional. I sort of whispered that Naomi has autism and loves the pasta and thanked her for her kindness.

I thought nothing more of it until I went to pay and the manager said she had something for me. She handed me a bag with an entire tray of the pasta in!

She had no idea of our story. She had no idea the stress we had all been through and the daily struggles we face. She had no idea that that pasta was pretty much all that was keeping my daughter out of hospital.

A tray of pasta.

Never before has a simple tray of pasta meant so much to me, or my daughter.

You don’t need to know someone’s struggles to be kind. You don’t need to know their story to show love. The smallest of gifts can impact another life so much. Be kind. Show compassion.

We have of course eaten the pasta now. But the love shown to my family that day lives on.

I’m still a mummy

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I watched the little girl shuffle across the floor on her bottom the exact same way my daughter used to do. So pretty, innocent and delightfully happy. I approached her mum and commented on what a wonderful way it was to get about. Mum didn’t seem so sure. The baby was only just over a year so I shared with her how my own daughter used to do the same and what a smart way it was to get about as it allows you to see where you are going and take things with you in your hands, both of which are much more difficult when crawling on all fours.

Mum seemed reassured when I spoke about how my daughter walks, talks, goes to school and is doing well academically. We smiled at each other, looked at each other and the conversation flowed. And then something changed. I mentioned, almost without realising, soon after, that my daughter has autism. And the conversation pretty much ended there. Any confidence and reassurance I had offered about her daughter seemed to vanish instantly. Somehow I wasn’t in a position to support or encourage because my child had some sort of disability. I am sure she probably just didn’t know what to say or felt awkward or maybe thought that somehow her daughter’s shuffling in the same way as mine may mean I was suggesting her baby may also have autism. Who knows. It just changed things the moment that word was said.

It isn’t the first time that has happened too. Neither of my children are potty trained and I find other parents avoid even talking about that when I am around. And some even find it strange if I offer to take their child to the bathroom if they require help. Maybe they think I won’t know what to do as my own children are still in nappies or maybe they feel it may upset me. Neither of those are true. When I mentioned to another friend how my son also loved being in a ball pool as a baby and still loves them now she seemed to want to change the subject. Maybe the thought my six-year old was still enjoying what her one year old likes felt weird. I am not really sure.

I sometimes want to say to people that just because my children have difficulties does not exclude me from the mummy club. I am still a mummy. My children still breastfed, had wind, were sick, went through teething, cried though the night, spat out solid food when they first tried it, learnt to sit and stand, walk and crawl and drove me crazy with noisy toys. They still pulled clothes out of drawers, fell asleep when I least wanted them too, loved throwing food from their high chairs and needed nappies changed at the most inconvenient of times. They were still children. And I am still a mummy.

The only difference is my children did these things at different times. I remember the breaking back pain of having to hold your babies hands to help them learn to master walking. It is just I was doing that with a heavier, slightly taller three-year old rather than a lighter, smaller one year old. But I still did it. Because even when children have a delay or a disability they mostly still have to go through the same stages of progress. They still have to master standing, balancing and confidence before they learn to walk. They still have to master sounds and listening skills and facial movements before learning to talk. It’s just my six-year-old got stuck somewhere when the one year old sailed through that. They still have to go through toilet training whatever age that gets mastered.

Identifying with you in your child’s progress does not mean your child has the same thing as mine. It just means my children are just as normal as yours. I still had to enrol my children at school. I even saw one take part in a nativity this week. And my children will still hate the sprouts for Christmas dinner like most other children.

I guess I just feel sometimes only going to things for disabled children, or ones with autism, or neurofibromatosis, or whatever, isn’t helping. It is often the only way we can access things and so I am all for making accommodations for families like mine. But it has the negative effect sometimes of making people think we are different. In some ways, of course, we are. In the community I live I would find it very hard to find another non verbal six-year-old or a six-year-old still in nappies for example. But I could easily find another six-year-old just like mine who doesn’t like doing what he is told, likes playing on an iPad and hates wearing a hat. I could easily find a six-year-old like my daughter who likes books and Thomas tank engine and baking cakes.

This Christmas please see my children the same as yours. Children with dreams and hopes and a bright future. Children who will wake up on Christmas morning to new toys, whatever they are, and who may end up playing with the box longer than the toy. Not because they have autism or developmental delay, but because all kids love boxes!

And just like every other mummy I want to make my kids happy. I want to hear them laugh and I want to have quality time with them. I want to be included with other parents too. Everyone is different but kids, disabled or not, are still kids.

And I am still a mummy.

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I just need some breathing space

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I keep looking him in the face while I make that phone call. Answering machine again. 20 minutes later I call again and yet again it is just the same. How many messages should I leave? How desperate should I sound? Is there a point at which you push too much for respite and give the impression you don’t love your child anymore?

School finished for the long summer holidays two and a half weeks ago. 18 days ago to be precise. I make out on social media we are having a wonderful time. For 7 of those days we were on holiday in a cottage in the middle of nowhere. I post photographs of my children playing with gran’s dog, going on trips by train, playing with toy trains and toy food and going on walks. We come back and I post about days out, more train trips and fun in the garden. I make out that everything is ok. Because I feel I need to. No parent wants to admit they are struggling. I want to enjoy having my children at home full time. I want to make memories and do lovely things together. This is my daughters last summer before starting full-time education and I want her to remember this summer. We have had lovely weather and there is so much we could do as a family.

But 18 days in and I can hardly keep my eyes open during the day. Two nights in a row of being up through the night with my daughter having continuous nose bleeds. The trying to do everything in silence to avoid waking her brother, but not succeeding. And every day Isaac being awake before 5am ( and awake during the night too) even when we have had a full on day of activities the day before. Everyday Isaac screaming for mashed potato and gravy at 6am and hitting me with the gravy jug because I said no. Then being hit on the face with the iPad because he has pressed on google but you have no idea what he wants to look at (google images is his current ‘thing’), only to have it thrown back at you because that wasn’t what he wanted. Everyday Isaac wanting pushed on a swing in the park for hours, the constant trying to escape every time the door is opened or unlocked, the constant spilling of any liquid he happens to see because he likes the sensory feeling of water, the continuous turning on of taps and flushing the toilet non stop, the endless screaming, the knocking things down to hear the noise all the time, the opening of the fridge and freezer and helping himself, the biting, self stimulating and banging on the table to demand more food yet again. The effect all of this is having on his sister, on my husband, and on me is showing. 18 days in and the cracks are starting to appear.

He needs the routine and stimulation of school. We need the break.

My mum is doing what she can to help but at almost 70 she isn’t able to lift Isaac or restrain him. And Isaac is the same in her house as he is at home. Nothing is secure. The dog’s water and food is tipped up onto the floor within seconds of his arrival. He is up at the table wanting food even when he has just been fed. He has the dogs toys tipped out and thrown around before we have even closed the front door. He is like a tornado that never ends. He has mastered how to open her back garden gate. And he finds all this hilarious.

We have to keep him occupied constantly. He can not play with toys, or sit for more than a minute or even watch TV. He walks over and breaks anything his sister is playing with. He wants to sit in a ball pool of toy food by seconds later he has the entire box of toy food strewn all over the living room floor. When he has a bath the bathroom floor gets as wet as he does. And he pours into his bath any cosmetics he can get his hands on. The taller he gets the more things he can reach. If his hands can’t open it he just chews it until it opens. He turns the taps on constantly. He won’t even stay still for a nappy change.

Before the holidays we were getting 3 hours respite a fortnight. It was like gold dust. It enabled me to get to church and hear a service, something I hadn’t done in 5 and a half years. I had time for a cup of tea and a brief chat with friends afterwards before having to pick the children up. I haven’t been in a church service since the last time they had respite. I miss that so much. So I keep calling.

We get so fed up getting messed around that finally one morning we put the children in the car and drive to the summer respite centre we were promised a place in. I feel a failure as I press that buzzer with tears in my eyes yet ears still hurting from the screaming my son is doing even at that exact time. I am having to phyically restrain him. He can see swings across the road. I ought to be taking him there not to some strange building he hasn’t been in before. And Naomi’s hands are out in front of her showing how scared and worried she is. Before she cries I pick her up and hold her. What sort of mother stands outside a centre on a warm summers day hoping to persuade strangers to look after my son? I feel sick but I know we have to do this.

They let us in. The children already inside are settled, happy and silent? I’m sure we have come to the wrong place. Apparently not. We register Isaac but hear how despite the fact we have a set of twins born just one minute apart, despite the fact they both have a diagnosis of autism, they are only able to take one of them; Isaac. I hope they didn’t see the relief on my face when they said he could come for two days every week for the next three weeks. 6 days, 5 hours each day of breathing space.

I hope that is enough to save my marriage. I hope it is enough to give my daughter some valuable time alone with us before she starts school. I hope they look after him.

My heart is broken that I have had to admit I am struggling. I keep telling myself he has to have one to one at all times at school even in a special needs school. I try to remind myself this is not a parenting fail but rather a child with severe and complex needs who still can not speak and isn’t toilet trained. My mind knows my whole family needs this breathing space even though my heart is broken at having to hand my son in to respite.

I love him so much. I just need some breathing space.

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Because a disabled child is a disabled family…

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Firstly, I want to stress that I am blessed. But secondly I also want to say that I still struggle.

I struggle with everyday things like taking my children out, buying food when we need it, cooking a meal, juggling hospital appointments with picking up children from school and nursery, dealing with the piles of paperwork and phone calls that have to be made whist functioning on just a few hours sleep, and trying to give both my children the time and attention they need.

My children are both disabled and therefore my entire family is disabled. That may seem a strange thing to say so let me explain what I mean.

This week my children have had some time off again for a holiday weekend. Like parents around the world I want to spend time with my children and enjoy them while they are young. The weather was not in our favour one afternoon so I thought I would do some basic baking with them. They are both 5. One is at school and the other nursery. How hard can it possibly be to make some chocolate crispy cakes?

Nothing is easy when you have a disabled child. My daughter was super excited about baking. My son could see it was something to do with food when the cereal packet came out the cupboard but that was all he understood. I explained the process to them using photographs (google is my friend) and we filled a mixing bowl with some cereal. And then everything went rather crazy after that! Because his sister had poured cereal into a mixing bowl and not a cereal bowl; because she wasn’t sitting at the table to eat breakfast like he expected from seeing the cereal out; because he had no idea what we were doing. So he lashed out. He screamed, bit himself, banged his head on the floor and threw everything about he could get his hands on. What should have been an enjoyable family activity was now becoming yet another casualty of my sons disability. Once again his disability was spilling into the entire family. My daughter could not continue baking, I could no longer give her attention or help and my son was seriously struggling. In the end Naomi made the quickest crispy cakes ever and Isaac sat and ate a bowl of cereal with some chocolate drops in. I made the mistake of trying to drop some melted chocolate in for him. Never again! The photo shows a smiling girl with a cake. But you just don’t know what else went on that day just to achieve that. One disabled child not coping and the entire family struggles.

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Then there was a 9am appointment for one of the children. That is quite common for us. Appointments in general are so common it is rare to have a day without one. But certain times make negotiating the logistics of family life a real challenge. How do you get one to an appointment and back to school 13 miles away and the other to nursery a mile in the opposite direction at the same time? Any family having to juggle hospital, clinic and therapy appointments with other siblings, work commitments and family life knows this dilemma. The disability of one child has a huge knock on effect on the others children and the parents. So often parents of disabled children are unable to continue working because the level of commitment needed to attend these things impacts on working life so much. A disabled child becomes a disabled family.

Then there’s the places you just can’t go to because your child is disabled. Yes more and more places are wheelchair accessible but that doesn’t make them autism accessible, or suitable to take an ill child or a child prone to seizures or public outbursts. Or even make them safe for a child with developmental delays or the ability to escape within seconds. As my children grow the list of places I can take them both to gets smaller. Holidays make that worse as everywhere is busy, noisy and unpredictable. Taking them to the local grocery store just to pick up basics takes military planning, praying the one (yes you read that right just one) disabled trolley is available, the music isn’t too loud, the layout has not been changed and the checkouts are not too long. I can’t just tell my children to follow me, or hold their hands or ask them to help. Picking up a pint of milk is as hard as an army assault course when 9 months pregnant! It is exhausting. One disabled child is all it takes for an entire family to be affected.

Emotionally disability affects everyone too. Parents worrying about test results, operations, high temperatures, infections, the next therapy sessions, the fight for the right services, the concerns about the future. Brothers and sisters torn between wanting time with their parents to support them whilst realising that far more attention has to be on their sibling. Children often becoming young carers long before they should have any real responsibility. Young ears hearing things that no child should have to hear simply because there was no child care to go to and so once again they had to ‘tag along’. Children seeing adults cry and not knowing how to cope with this weight. Brothers and sisters coping with their toys and valued possessions being destroyed by a sibling who never seems to get told off, or who doesn’t seem to care. Children afraid to tell their parents they are being bullied because they don’t want to add to the already heavy burden that their parents are coping with, or worried about asking for money for a school trip because they know money is tight, or even struggling with feelings of resentment towards all the attention the disabled sibling seems to get. That balance is often impossible for parents of disabled children to get right. Whilst one child might be registered disabled, emotionally everyone in the family is disabled too.

One child wakes up screaming and often the whole family gets little sleep. One child is sick at the dinner table or throws the meal across the room and no-one gets to enjoy a meal. One child refuses to go to school or wear the uniform, every child is late as a result. It is a ripple effect.

We need to support disabled children. We need to continue to spread awareness of disability in all it’s forms and continue to invest in services, therapies and medical equipment. But we also need to remember the parents and the brothers and sisters too who live disability on a daily basis. They might look fine but remember…a disabled child is in fact a disabled family. And they ALL need our prayers and support. Thank you!

A special needs Christmas carol

God bless ye precious families
Let nothing you dismay
Remember that our special kids
Might scream on Christmas day
To save you from those children’s tears
Keep receipts for all those toys
O I’m longing for comfort and joy, comfort and joy
I’m longing for comfort and joy.

In lots of towns and lots of rooms
They’ll be strange dinners made
Cos lots of children can not eat
The turkey that’s been laid
So just make chips and nuggets now
To keep your happy boy
Or you’ll never see that comfort and joy, comfort and joy
You’ll never see that comfort and joy.

From God our heavenly Father
Our blessed children came
But he now needs to give us patience
So we can all stay sane
The lights he broke, the baubles smashed
The tree he did destroy
And now I’ve lost my comfort and joy, comfort and joy
Now I’ve lost my comfort and joy.

Fear not said all the family
It’s just the time of year
It’s just because you spoil him
That iPad was too dear
But they don’t hear his high demand
It’s all that he’ll enjoy
But we still sing of comfort and joy, comfort and joy
We still sing of comfort and joy.

The schools are closed for Christmas break
The teachers need a rest
So we’re left caring day and night
But still I say we’re blessed
Lot’s more hugs and kisses too
Times with my girl and boy
And that will bring me comfort and joy, comfort and joy
And that will bring me comfort and joy.

And when it comes to holidays
I need you all to see
Our special kids might be the ones
Who are up in A and E
I’m grateful for the NHS
And all who they employ
To help us spread the comfort and joy, comfort and joy
To help us spread the comfort and joy.

Now to the Lord sing praises
Our children are still here
And with true love and brotherhood
We face another year
So from us all at Christmas time
I hope you all enjoy
Good tidings of comfort and joy, comfort and joy
Good tidings of comfort and joy.

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