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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When you don’t feel ‘enough’ as a special needs parent

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By 4pm the panic was setting in. Later afternoon is the time it mostly hits. I begin to think about dinner, cleaning up, baths, stories, and hopefully bedtime, and I realise yet another day has passed and things haven’t changed. When my children eventually settle to sleep my mind will run through all the missed opportunities, all the forms I never quite had time to fill in and all the moments I left my children to entertain themselves. Did I do enough today to help them? Did I do any of the exercises the physiotherapist told me I should? Did I ensure my daughter had her insoles in to correct the turn in her feet? Did I teach them anything or encourage any social skills?

Even if I did something, was it enough?

If I read my children’s speech reports I am reminded of all the times today I forgot to use pictures to reinforce understanding, and why do I suddenly remember all about makaton signs the second my child has fallen asleep?
Then I remind myself I am not a speech and language therapist. Even more important I am not MY CHILD’S speech and language therapist. I am his mum. I can never be ‘enough’ for his speech and language development as that is not my speciality. So I could do more! What parent can say they honestly do all the exercises with their speech delayed child all the time?

If I read my child’s physiotherapy report my heart sinks. Once again another day has passed and we never did those leg strengthening exercises she hates, or invented games that required rolling. When I was busy cooking I noticed she was sitting in that ‘W’ shape again and I left her too it. I never did enough. Actually I don’t think I have ever done enough to satisfy her physical needs. I feel guilt about that daily but then I am sure all parents feel like this sometimes? Maybe it is just me?

I left my non verbal son to watch videos on his iPad today. Not the most ideal thing according to therapists I know, but sometimes I just can’t do it all. I even put my two autistic children in the car and went somewhere today without first reading them a social story about it, showing visuals and going through the route on google street maps! Oh dear, no brownie points for me today!

The fact is they survived. I survived. We lived to see another day, and yes I will always feel guilt at what we didn’t do in terms of therapy or research or exercises, but in many other ways I was more than enough for my children today.

They had more than enough of my time.
They had more than enough to eat and drink.
They have more than enough toys and technology.
They have more than enough clothes to wear.
They have more than enough access to medical and educational support.
They have more than enough love.

Fellow special needs mum, remember this: never let any professional make you feel less than enough. Never let your child’s struggles make you feel less than as a parent. You ARE enough! Your love, encouragement, support and dedication WILL be enough. Did you make it through another day? You were enough today and you will be enough tomorrow.

Never ever forget that!

This post first appeared here.

 

 

 

The effect on me…

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Having children affects everyone. You become less focussed on yourself and more focussed on another. You sleep less, go out a lot less and consider it a great achievement to get a shower without interruption. But as time passes the children slowly become more independent and confident and you little by little gain more of yourself back again.

Well that is how it works when you have typical developing children anyway. But what if that very needy, all-consuming, up through the night, needing a huge amount of time stage never ends?

It is well documented that parents of very young children are vulnerable and prone to depression, mental illness, and can easily become socially isolated. Health professionals are trained to look out for this and regularly check for signs that all is not well as research has shown that sleep deprivation and coping with the high demands of a baby or young child take a huge toll on parents.

But it is expected that season will pass as the child grows.

But for some, like myself, that season just keeps going on. And not because I went on to have another child either. It is because almost seven years after having my babies I still face the high demands, the daily intimate care needs, the lack of sleep and the stress of milestones not being met. My children have disabilities and the pressure parents of very young babies face is still very much the same as what I face daily. I still change nappies, I wash my children and dress them, I am still singing nursery rhymes and trying to teach one to say ‘mama’ or ‘dada’, I am still cutting food up and putting socks on that have been pulled off.

And that long-term intensity has to have an effect on me.image

It takes it’s toll mentally in that some days I could just sit and cry. The doctor could give me tablets but the pain and stress would still be there. Some days the effort to get dressed and get out the house just seems too much. Except unlike parents of babies who don’t have to leave the house and can go back to bed, my children have school to get to even if one of them still only functions at the level of a 1-year-old.

It takes it’s toll socially in that going out at night is impossible. Besides the fact I have huge caring responsibilities and am permanently exhausted, baby sitters are a rarity for families like mine. Who has the physical ability to carry a large six-year-old out of a bath and dry him and dress him? Who has the emotional strength to deal with a little one having a panic attack because her mum has left the house? Even if I did find that special someone I have no motivation to get dressed up and make myself presentable when my body just craves sleep.

It takes it’s toll physically. The lifting and carrying of a baby can make a mum’s arms ache but when the ‘baby’ is two thirds of your height and a quarter of your weight how do you manage? Seeing to personal needs of a toddler who decides to crawl away is a challenge. Seeing to the personal needs of a child who can bite, punch, kick and climb is an altogether harder challenge. When they are long past the age of using a baby change in public and you have to find a way to meet those needs in public toilets not build for that purpose your body aches and bends in ways you never thought possible.

It takes it’s toll financially. Babies cost. I often hear parents complaining at the cost of essential items like prams, car seats, cots and nappies. Second hand is sometimes an option though. But not when you enter the ‘special needs’ market and you have to look for elastic waisted soft trousers for a child who can not dress himself yet aged 6. Or you have to think about paying for private therapies not available on the NHS. Then there is the cost of hospital trips, the fact the schools are miles away from home and special needs sensory toys come at a huge cost. And I still have to buy wipes, and bedding and nappies and other ‘baby’ items six years on.

It just all takes it’s toll on me.

The days of people ‘popping by’ to see if I am ok has long passed. The excitement of coming to see those new babies has long gone. The phone calls from friends to hear how the babies are stopped many years ago. Yet the reality of my life never changed much.

Yes, my children have changed me for the better, but full-time caring for a disabled child takes it’s toll.

Please, if you know someone who has a child with any sort of disability, think about and do what you can to help the child. But have a think what you could do to help mum or dad too. Believe me they need support more than you may ever realise.

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What if no-one ever understands him?

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I am a parent. So by nature of the job description I worry for the future of my children. I worry about wars and disasters and car crashes and bullying and wether or not my children will be messed up by my parenting. But mostly I worry if anyone will understand my son.

Because at six years and nine months old I still struggle to understand him myself.

My child is so unlike me. I try to imagine what life is like for him but in all honestly I just can’t.

I talk to him all the time. But he never talks back. I read to him every day but he never asks anything about the story or attempts to learn to read it himself. I make him food and although he eats it I have no idea if he is just tolerating it out of hunger or if he actually enjoys it. I sing nursery rhymes to him but I have no idea if he understands a word I am saying.

When he imageis sick I have no idea if he is in pain and if so where.

I know he loves lifts, hand dryers and mash potato. But I have no idea why.

For over 600 days all he would wear was the same jumper. Lots of people have had guesses as to why but only my son really knows. And he can’t tell us.

I took him to a sensory room recently where there was something called a musical wall. He touched that wall in the same place over and over again to hear the same song. I was so desperate to ask him what is was about that wall he so loved. I would have loved to hear his little voice join in as that wall sang ‘you are my sunshine’ for the hundredth time.

What was he feeling? Has he enjoyed the other places I have taken him this summer? Does he like school? What would he like for his birthday?

There is just so many unknowns.

I have read books. I have spoken to therapists who apparently have trained for years in his conditions. I have attended so many courses. I have even spoken to many adults who have the same conditions as my son. I have spent six years and nine months living with my son.

And still so much about him is a mystery. We are all guessing. And we could all be wrong.image

Why can’t he speak? Why does he flap? What is it exactly about lifts and hand dryers that he likes so much? Why is it so traumatic when I cut his nails, or wash his hair, or use a different plate for his dinner? Does he miss me when he isn’t with me?

I want to know. Because if I don’t know who else ever will?

So yes, I worry about the future of my non verbal, severely autistic son with neurofibromatosis and learning difficulties.

I worry that people will take advantage of him. Or hurt him. Or never allow him to be himself. I worry about whether he will ever learn to communicate or whether anyone else will be able to communicate with him.

There were moments today as he pulled my glasses off my face yet again and climbed all over me that I wondered how much longer I would be able to care for him full-time. And that scared me.

He is my son. I adore him. But I don’t always understand him.

And not for the first time I wonder…

What if no-one ever understands him?

If he was your baby would you not worry about that too?

It’s all about me!

Being positive is not being in denial. Posting highlights of your day on social media is not being fake. Trying to find hope in hopelessness is not wrong.

Attitude means everything.

And recently I have had to give myself a good shake.

Living with the daily challenges of two children who struggle can really get me down. Some days, more than I would like to publicly admit, I cry. I worry about the future. I struggle through everyday, often silently. And I feel alone.

But then I realised something important. I came to realise it was actually all about me!

I could look at things negative. Or I could try to see a positive.

imageFor example I could have wallowed in upset at the thought my daughter was so anxious she never made it to her first ever school trip. I could have become angry that she seemed to be excluding herself due to fear. But instead I chose to take her out for the day instead and shared a picture of her smiling face at a science centre rather than dwelling on her inability to join her peers at the zoo. School trip failing verses mummy and daughter quality time? Which would you have thought about more?

imageSame with sports day. I could shed many a tear over the fact my daughter was unable to join in many of the activities due to her difficulties. I could share pictures of an older girl having to take her hand and support her for even the simplest of races. Or I could take pride in the fact that on the tenth go at running around the cones my six-year-old finally had the confidence to say ‘can I try that myself?’. Those nine turns at needing support could have broken me but that final time doing it independently will make up for that every single time.
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And then there was her class assembly. I was hurt and devastated when my daughter came home to say she was the only child in the class who did not have a speaking part. Her teacher had asked her and she had told them she felt she could not do it. Though I admired her honestly I have to admit I also felt so sad. For her, and for me. But can I tell you something? There was not a dry eye in the house on the day of her assembly when she took centre stage and held the entire show together with the most crucial part in the play despite not saying a single word! In the words of my six-year-old, ‘We can’t all have speaking parts. Someone has to do the acting!’ There is so much wisdom in that.

I could think about the sadness of taking her to yet another appointment.Or I could look at her smile as she played innocently in the waiting room and her sheer delight at being given insoles to help turn her feet. I think as adults we too often set our minds on that appointment rather than the child-like look at it all.
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I could be angry at the fact I never get to sit in church with everyone else due to my children’s needs. Or I could take pride in the fact my children will sit outside the hall in their own little bubbles allowing me to at least be in the building. This is progress.

I could be embarrassed that I took my children to visit a friend and my son preferred to feel her garden bush than to be social. Or I could snap a picture of his happy face and be grateful my friend accepts us for who we are. And is happy for us to come back anytime.
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I could shed tears at the fact my daughter recently went to a party and spent two hours sitting at the side next to me on her own. Or I could be delighted she was invited in the first place and see this as progress that she stayed in the room and enjoyed watching.
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I could become frustrated at the fact everywhere we go my son is fixated with the elevators. Or I could ride with him, film him and discover on play back that he actually said the word ‘again’! Had we not been at that lift I would have missed that word! He hasn’t said it since but I have a video as proof and in time I may one day hear it once more!
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And finally I could despair at the fact that for almost two years now my son has refused to wear anything other than his beloved school jumper. I mean literally every day I only get to see him in red. It started off funny but then in time I somehow gave up hope. Then, just today, he let me put a t-shirt on him and he kept it on happily all day long! And after all those tears, hopelessness and feelings of despair, I found a reason to smile again.
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My children have some real struggles. I will never deny that. And everyday is a challenge. But sometimes it isn’t about them. It is about attitude: My attitude. Sometimes it is how I see things that makes a real difference to everyone else.

And now I realise that: it is all about me!

What if the hare doesn’t nap?

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Most of you will be familiar with the age old story of the Hare and the Tortoise, one of Aesop’s fables. The story being that a hare and a tortoise race. Of course the hare, being by far the fastest, takes a very early lead and, not seeing the tortoise anywhere behind him, decides to take a nap. Meanwhile the tortoise continues slow and steady and in doing so passes the hare and wins the race. We can all pick out the moral easily about not being over confident in life and that there are advantages to going slow and steady.

I am a mother of two children with additional needs. We are living every day like the tortoise and moving at a very slow pace. We have missed more childhood milestones than we have reached so far. But we keep moving even if at times it feels impossible to catch up with others.

This last week my son got to go to mainstream school for the first time. Except, like so many other things in his life, it came years later than it should. And even then it was only a fleeting visit. But, just for once, I got to walk both my children home from school. It was beautiful. But it won’t happen as a daily occurrence. Because although I can dream and pray, the reality is he will never catch up with the hare’s in life.

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Because in real life the hare doesn’t nap.

In real life other children won’t take a ‘nap’ from their development to allow him to catch up or even overtake. They won’t stop learning, or maturing or gaining new skills. Life is not a fable, and there are no fairytale happy ever afters.

But that does not mean it is all sad. It just means I have learnt to accept that the race is not for winning but rather for taking part in. We are not all equal. But my job as a parent is to make sure my children never feel like failures because they are taking the race slow and steady. It could become easy for them to become intimidated by the speed and ease at which the hares are moving along. They could get frustrated, depressed or feel overwhelmed at the never-endingimage struggle just to master a little skill others did years ago. So my job is to make a huge deal of everything the hare takes for granted but the tortoise finds so hard.

Like the fact at six years and three months old my son finally worked out how to build a tower out of bricks. So what that he failed to do this task when assessed at his two-year check up? So what that babies younger than a year have mastered this skill with ease? He moved slow and steady and finally did it. He actually got to the end of that race even if it took years to get there. They just assessed him on the skill years earlier than they should have.

Like the fact at age six his sister mastered jumping for the first time. The himageares did this before they even started nursery and they are now onto skipping, hopping and riding bikes. And most of this probably went unnoticed. But we celebrate everything in this house. We celebrate the first snowman ever built:

We celebrate every little noise that may vaguely be the sound of a word. We celebrate getting invited to a hares birthday party because being with the hares is so good and often so rare too. There were fleeting times that it was hard to tell the difference between the hare and the tortoise at the party as both sat together to share food and drink. Hares are beautiful, agile, and wonderful. Just like the tortoise is too.

The hares may be winning the race with ease but I have no bitterness or anger about that. Because that is what hares were made to do. But my children are tortoises. They are hardy, colourful, strong, like their own company and move carefully and thoughtfully. Sometimes they just hide inside themselves for a while until they feel confident.

Meanwhile the hares don’t nap.

And neither they should. Life isn’t a fable. But we can still learn lessons along the way.

My kid cried…let’s call a meeting

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Something about the ‘stay at home mum’ got lost on me this week. I was hardly home at all. One meeting was followed by another meeting, followed by phone calls and emails.
I am so grateful for having people involved in my children’s lives. I appreciate the work my children’s schools do and the professional involvement that they both have. But it is a stark reality that having two children with additional needs with two separate teams of professionals and two different school to deal with often means a whole load of meetings.
Add to that medical issues and everyday appointments like dentists, opticians etc and I once again realise why I am often more of a carer than a parent.

The reality is that meetings are necessary. I can not raise these children alone. I have had to ask for help. We have speech therapists, educational psychologists, social workers, occupational therapists, doctors, paediatricians, nurses, support staff, teachers, head teachers and carers all involved with the children. And they all need to know when things change.

Then there is church too. After almost six years attending crèche the tiimageme has come to discuss how we go about transitioning the twins into Sunday school in church. While other families just take their child to a different room one week, perhaps stay for a short time and then leave them, it isn’t that simple for me. So I had to have a meeting. The children need social stories, photographs of staff, visual timetables and lots of discussions about to manage behaviour, communication and anxiety.

Now school has returned and there are new teachers to work with, new support staff and medical issues to sort there has had to be meetings with both schools. I have had discussions with teachers, head teachers, support staff, seen where one of the children will be changed and sorted through lots of minor issues and misunderstandings. The transitions to new classes and starting school has been hard on the children. It has involved panic attacks, self harming, screaming, and a whole lot of tears. Only one of the children has the ability to tell me what has been going on. We needed meetings and phone calls to help sort out a whole page of difficulties for one child and meetings to sort out ‘unknown’ difficulties with the other child. School has brought with it such an intensity at times and family life has been very hard. While that is often just something families need to go through and you know it will sort itself out, when your child has a disability you have a duty to keep professionals informed in order for them to best help and support. No parent can have their child self harm or have daily panic attacks and just ignore it.

We had some teething trouble with transport. Lots of phone calls later and that seems to be more stable. We have had challenges with homework in a house where both children require 1-1 at all times. The balancing of needs is turbulent at the best of times but add homework into the mix and the storm hits with full force, from both children. So this needed discussed with school too.

Care plans needed updated, medical issues have needed addressed and sensory needs monitored. And it all involves lots of discussions and meetings.

At times it really has felt like the second one of the children cried we would be having yet another meeting.

Sometimes it would be nice to just get on with family life. It would be lovely to have privacy and not have to keep discussing daily how we will deal with today’s struggles and tomorrow’s worries. It would be wonderful to not have to read school diaries and feel the weight of concern when you read ‘they had a bad day today’.

But I have to accept that if my children have support then in turn I lose something of myself. I lose my time, my privacy and some of the confidentiality of family life. My children lose a lot of that too. In order to help there has to be meetings. People have to know when my children are in pain, highly anxious or upset. We do need to share sensitive information with others like when they have had bowel movements or what they have eaten. It has to be recorded for their health and well being. Sometimes that just upsets me. It can feel like an infringement of privacy at times but sadly for everyone these things need to be shared.

But can I tell you that today my kid cried. And I just dealt with it. No-one else will know why and there will be no meeting. Because in all these discussions my family still needs respect and privacy.

Just because my children have extra needs does not mean everyone has to know everything. Help us, don’t suffocate us.

I might just mention that in the next meeting I go to…