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. 

I’m not perfect but I am perfect for them

I have a confession to make: I got annoyed at my children today! What? You have done that too? Seriously why are we so afraid as parents to admit we are less than perfect.

 
Last week I took my kids to the dentist at the wrong time. I sent my son to school the week before without any lunch. He is not able to talk so could not tell anyone. I blame sleep deprivation personally.

 
I do my best. It is what we all do. 

 
But still we never seem to feel we get it right all the time. That feeling is magnified when your children have extra support needs.

 
I remember eagerly buying push along toys, walkers and sit on cars for my toddlers, only to have them sit unused in a corner as my son was three before he walked, by which time they were all far too small for him. I tried to do the right thing, the ‘perfect’ thing, but for my children it was anything but perfect.

 
I sang nursery rhymes with my babies. I read to them, talked to them all the time and blew bubbles. Yet still my 8 year old to this day can’t say a word. I did all the right things but for him it just wasn’t to be.

 
I bought this wonderful potty for my kids. You know the ones that sing to them when they pee and even looks like a toilet. That was a total disaster!

 
I took my pre-schoolers to museums, cafes, soft plays, garden centres and farms. One of them screamed all the time and the other was terrified. What seemed the perfect thing to do was in fact anything but for my autistic children who struggled with sensory overload everywhere we went. 

 
So I decided to stop being the perfect parent and instead become the perfect parent to THEM. That meant taking my son to see lifts. It meant taking them on train rides and joining in games of lining up toys. It meant accepting them for just who they are and allowing them to be autistic.

 
The best toys I ever bought them were second hand. I gave up full time work to care for them so I can attend all their meetings, keep up with all their teams of professionals and ensure they get the support they both need. It means I am there to keep the routine they need to feel secure and calm my son when he is in meltdown.

 
Being the perfect parent for them means sometimes making the same meal every night for a week just to see them eat. It means trailing shops to find the only juice my daughter will drink. It means cutting out labels in their clothes and ensuring the materials are soft and not too ‘busy’ so as not to upset them. It means reading the same bedtime story every night for two years in exactly the same way. It is answering the same question for the hundredth time and remaining patient.

 
Do I get annoyed at them? Of course I do. I am human. Do I annoy them? Absolutely! Do we love each other and hug often? Yes we do. 

 
I am never going to be that parent who shows off a shelf full of trophies my child won at dancing or football. I am not going to be the parent who home makes Halloween costumes or bakes the most incredible birthday cakes. My kids have way too much screen time than is recommended and my son can’t even write his own name at 8 years old!

 
But I know what triggers a meltdown in my son and how to avoid it. I know what makes my daughters anxiety reach sky high and can work through this with her. I know the limitations of my sons eye sight and the fact he can not see pale colours. I know exactly what reading book my daughter has this week and what characters she is into just now. I know their routines for bedtime and school days and follow them like a robot so as not to upset them.

 
Those things don’t make me the perfect mum, but they do make me perfect for them.

 
I am blessed to have them. We are blessed to have each other. None of us are perfect but together we are the perfect team.

Finding beauty in the simple

Peace can often best be found in moments of simplicity.

The last few months have been anything but calm in my family with illness, upset and medical challenges and I have had to learn to find tranquility in the points of each day that may easily be overlooked. I could become overwhelmed with the endless screaming for example but that ten minutes when he laughed and flapped at yet another hand dryer shows me that such a simple thing can bring so much pleasure. Or watching his sister get so excited at the workings of  revolving doors. These are the moments I have to treasure in the midst of chaos.

Like the moment the other day when I was playing a game with Naomi and for the first time her twin brother showed an interest too. It took so much for both children to play together: one requiring encouragement and reassurance that I would not allow her brother to once again ruin the game or become violent and the other requiring huge physical and mental support to have any idea what the game was about. But despite that we had a beautiful moment. It was simple. But my twins played together for a brief moment. They connected and that was the moment I will remember from that day, and hopefully they will too. A moment of healing, peace and beauty in an otherwise stressful and chaotic weekend.

Life is not easy. I will never pretend it is. My children have huge additional needs and that puts a massive amount of stress and pressure on us all. But in among the endless meetings, appointments, forms, phone calls, paperwork and high care needs there are moments of love, moments of beauty, and moments to treasure. Right now those are the things I am looking for in every day. It is the glimmer of gold dust in among the filth, it is the rainbow in an otherwise wet and grey day, it is the diamond that appears when you least expect it.

I came across this poem I wrote about twenty years ago and it sums it up:

Beauty in the simple

Have you eyes to see the beauty in the simple?
Do you stop to smell the roses as you drive?
Inspiration will derive from all that’s simple
And it’s the simple things that keep us all alive

Have you eyes to see the beauty in a raindrop?
Or notice all the colours in the grass?
Have you ears to hear the song the birds are singing?
Or watch the insects crawling as you pass?

Have you time to notice how the leaves are falling?
Or gaze as clouds are drifting through the sky?
Can you taste the purity of water?
Have you listened to a new-born baby cry?

Have you eyes to see the beauty in the simple?
Or grasp those tiny details all around?
A creator who was wise and so inspiring
Knew that beauty in the simple could confound.

It really is amazing how a simple thing can make a big difference. My son may never be able to say I love you but his hugs say so much more.

When everyone wants a piece of you

Another day. Another appointment. Another night of being woken through the night. More phone calls. More screaming. More bodily waste to clean up. More pressure. Never-ending stress.

Every parent gets stressed. Everyone needs a break at times from the 24-7 demands of raising children. But sometimes the added pressure of having children with additional support needs just becomes overwhelming when the days and nights become one, the paperwork piles up and everyone wants a piece of you.

What do you do when a professional calls you and you need to take the call yet your child needs your urgent attention at the same time (I could list any number of things they could be doing here like smearing faeces, climbing in a bath of water fully clothed, feeding the fish a tub of sudacream, eating frozen food from the freezer or escaping out of a window or door)? What do you do when you HAVE to find the time to complete urgent paperwork but your eyes can barely stay open and your mind can not focus due to exhaustion? How do you explain to a child with very limited understanding that their routine needs to change to go to yet another hospital or clinic appointment? What do you do when one professional says one thing and another disagrees and you are caught in the middle? How do you cope when mealtimes make you cry because your child just won’t eat and the other one just won’t stop eating? How do you remain at peace when your child comes home from school wearing clothes for the opposite sex because yet again he has gone through four pairs of trousers in a school day even whilst wearing nappies?

Everyone wants a piece of me.

I am expected to turn up at meetings and act professionally even when at times my heart is breaking. Crying is meant to be reserved for the privacy of your own home and only makes professionals question your mental stability if seen in public.

I am expected to follow through programmes designed by professionals who think they know my child better than me and who think I have nothing to do other than run with their latest plan.

I am expected to answer phone calls and emails in a timely, professional manner as if working in an office environment while the washing machine is spinning in the background, the children have technology at full blast (what other volume is there?) and the window cleaner is knocking my door asking for money.

I am expected to turn up to the right appointment, at the right day and time, with the right child, focussed, prepared and calm with a child who is alert, receptive and willing to participate in whatever therapy they are having today. And all this with a smile on my face and an enthusiasm for the programme.

I am expected to do homework with my children, take them to activities to ‘broaden their horizons and stimulate their interests’, give them a healthy diet and exercise, nurture their talents and spend quality time with them, when in reality we spend our evenings making chicken nuggets for tea again, watching the same programme on TV for the fiftieth time and coping with screaming children, toys and technology being thrown across the room and being physically attacked because I dared to run them a bath!

Schools expect me to jump at the first mention of ‘parent involvement’, hospitals expect me to fly my children to appointments (well they certainly don’t expect me to park given the lack of spaces they provide!), social workers expect to come to a house that is well run, clean, yet homely and comfortable, and my children need me to hold them, love them and help them all the time.

Yesterday I had one meal. It was one of those days. And the fact is I am not alone. There are so many parents in the same situation. Living with stress that is incredibly high, balancing meetings, appointments, therapies, professionals, children and the demands of running a home whist caring 24/7. Because despite the volume of people involved with my children it will still be me tonight who cooks them both tea, has clean clothes for them to wear to school tomorrow, reads them the bedtime story and kisses them goodnight. It will still be me who lies with them through the night while they cough or cry or scream.

It is me who knows them, protects them, loves them.

Everyone wants a piece of me. But these two have a piece that no-one else can ever have. They have my heart. Every other piece of me can just wait while I take a moment to hold them. The phone can keep ringing, the post can wait a moment and the emails can stay unread just a little while longer. Whoever else wants or needs me these two always come first.

Pass it along…and leave it to mum

What qualifications did I need to become a mum? Very little, if any.

Teachers study for years, as do speech therapists, occupational therapists, physiotherapists, social workers and psychologists.

I am just a mum. I don’t mean that in any way to put down what I do. But my role is very different to the specialists named above. My job is to love, nurture, support, encourage and guide my children to become the best that they can be in life.

For my children with additional support needs that means I will be changing nappies much longer than average, still teaching basic sounds and numbers long after others, and spending that bit longer supporting my children (possibly way into adulthood). That I can, and am happy, to do. I will happily spend my evenings singing nursery rhymes, playing board games and doing homework. I have no issue with cooking, cleaning, washing and other seemingly mundane house hold chores.That is what being a parent entails.

But increasingly I feel I am being asked to be way more than a parent to my children.

As financial pressures increase upon the services my children depend upon to support them, there is a current trend of ‘pass it along’. Basically for so many professionals their time with my child is very restricted. Their roles are goal oriented where after a few sessions it is expected they can record progress and show they are making a difference. Then they show me how to do what they have started and move on.

So for example, the speech therapist may visit and introduce some basic visuals. He or she may check my son or daughter appears to understand, then proceed to give me a quick demonstration and hey presto…they vanish off the scene leaving me to do their job! They have little choice really. They have referrals coming out their ears and fewer resources at their disposal. So ‘pass it along and leave it to mum’ is the only way for them to survive.

So now I am a parent and suddenly a speech therapist too. That adds a bit of pressure.

My daughter was finally seen by a physiotherapist this week. She was lovely and very thorough. We now have a much clearer understanding of some of my daughter’s physical difficulties. More referrals will now be made (the hospitals must think we have a season ticket!). When I asked specifically where we go from here I was told that hopefully someone can show the school some exercises and we will also be sent leaflets full of things to do at home too. No time to come and teach me. It is expected I will be able to work it out myself, without all their years of specialist training. No time, no resources, not enough staff. Pass it on; discharge.

So now I am a parent, a speech therapist and now a physiotherapist too? I can sense the washing pile mounting up more and more!

The occupational therapist came this week too. Her case load is more than some schools have on their entire role! There was insufficient time (as usual) to complete the paperwork she wanted to do that day so a pile was left for me to complete as soon as possible. And of course she left us with more practical ideas to support the children. No time to teach but ‘the sheets will explain’…where have I heard that before?

Now I am a parent, a speech therapist, a physiotherapist, and an occupational therapist!

Do I really need to tell you what sort of thing the psychologist meeting was about? I think you get the picture!

Of course I could easily chose just to default and be ‘simply’ mum. But the reason my children were referred and accepted by all these professionals is because there was a need for their services. Their input could apparently ‘add value’ to my children’s lives. They could apparently help us.

So while I am left with not only the raw emotions of finding out my child has yet more physical issues and needs, and passed to yet more health professionals and departments, I am also forced to take on roles I am neither qualified or trained to do.

And when it all unravels and my child still can’t talk or use visuals in years to come, or my daughter is still unable to carry out certain physical tasks or is still crippled by anxiety who will accept responsibility?

They will say the have done their best. They did exactly what the system expected them to do. They passed it along…and left it with mum.

Meanwhile poor mum has little time left just to be a mum. She is far too busy trying to be the professional needed for her children.

It’s just she has no-one left to pass it all along to.

As long as they wear it!

The weather is getting colder and the kids keep growing, so I took myself to the shops today to buy them some new winter clothes.

Like everything else though it was much harder than I thought it would be.

So it seems everyone is into the film Frozen and this is reflected in all the clothing stores. My almost six year olds have never watched a film in their life and when my daughter saw a clip from Frozen in her nursery last year it gave her nightmares for weeks. Numerous other characters appeared on t-shirts, jumpers, and pyjamas for the girls yet I had no idea who they were. We watch very little TV. My daughter’s current obsession is Octonauts and like her previous obsession of Thomas Tank engine it seems that girls are not supposed to like such things, and certainly there is no demand for pink items with such characters on. She will, once again, be most disappointed. Neither is she a huge fan of all things ‘girlie’ like tutu’s, bows or frilly socks. She would far rather wear a jumper and leggings to play on the floor with trains or her little characters from Octonauts.

She also has sensory issues. She likes soft, cosy and lose fitting items. She hates tight fitting or hard fabrics like jeans and much prefers her arms to be covered. She only likes soft tights and only when the seam is ‘just right’. Socks must be neither too tight or too loose and this poses a real problem just now as her feet are at that transition size when she is right at the bottom end of the sock size and thus socks are all baggy and loose until her feet grow even more. But the smaller size socks are right at the top end of her shoe size and thus too stretched for her to feel comfortable. She is petite and very slim so that also makes it difficult as elasticated items often just fall right off her.

If I thought she was hard her twin brother is even worse! For 440 days now (yes THAT many!) he has only ever wore his school jumper EVERY day, including his birthday, Christmas Day and every weekend. I have tried every style of red jumper imaginable but nothing will encourage him to even try anything else. His school uniform includes jogging trousers (far easier in an incontinent child) but he used to happily wear any trousers that I put on him. But in the last few months he has refused to wear jeans or chinos or corduroys and now insists on jogging trousers everyday too. There isn’t much selection of colours in jogging trousers and even if there was there are only a limited amount of colours that match the traffic light red of his school jumper. At least a jumper is appropriate winter clothing!

He refuses to wear a hat and gloves. He sees no need to as he rarely feels the cold. It is a massive battle to even get him to wear a coat. But he will at least wear wellington boots, preferably if they are red! He would happily be bare foot, even outside!

Clothes for Isaac have always been an issue. He never walked until three and buying trousers for a toddler who could not walk was difficult as they all had pockets and thin knee areas that are useless to a crawler. As he has aged less and less trousers have the elasticated waist required for a child in nappies and it is all button flies and clips suitable for children developmentally the same age as their clothing size. And then there is the age appropriate issue of bibs and motifs. While my almost six year old would still be delighted to see socks with Igglepiggle on or Peppa Pig, it is assumed that those wearing bigger socks would rather see superheroes, Lego and characters from computer games. Isaac has no idea what any of these are. His feet may be the size of a six year old but his brain is still that of a young toddler.

He will be requiring Velcro fastening shoes long after his peers have learnt to tie. I pray Velcro shoes stay in fashion for years to come.

It doesn’t matter to my children where I shop. I will be cutting the labels out of the clothing anyway! They are not brand away or swayed in any way by peer pressure. They have no concept of cost.

At the height of Halloween I didn’t need to enter into the frenzy at the costume areas either. Neither of them will entertain dressing up at any time. They are happy with who they are and imaginary play is not a skill high on their priority list.

In the end I settled for another few pairs of the same joggers I always buy for Isaac. And Naomi got a new fleece jumper and some warm soft leggings. And both of them got some new pyjamas. Not that they are bothered really.

Clothes are just functional to them. And since Isaac stripped off in the middle of a restaurant last weekend it hardly matters what I buy him…the important things is he wears something!

I choose my battles carefully. And I buy what they like not me. After all it is them wearing it not me.

Are they warm, comfortable, happy and wearing something? Well that is all I ask.

Winter, we are ready for you 🙂