I Don’t Want To Be An Autism Parent Anymore


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. 

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


People don’t expect much of my son. 

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

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

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

The public looks down on him in distaste.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How My Severely Autistic Son Used YouTube To Speak To Me


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

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

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

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


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

 
“Don’t weep for me…”

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

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

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

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

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

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

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

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

 

Are we being ripped off as special needs parents?

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If there is one place where my children feel safe, relaxed and happy it is in a multi sensory room. The twinkling lights, relaxed ambiance, tranquility and sense of well being is totally priceless and it seems the manufacturers and providers of these rooms agree with me on that!
Did you know the average sensory room in a school or nursery costs upwards of £5,000 and this is just the basics!

I am in the process of building and equipping out a sensory room for my twins with autism and I sure don’t have that sort of cash in my back pocket. The reality is that due to the complex needs of both my children I am their full time carer earning a measly £62.10 a week in carers allowance. My maths is not brilliant but by my calculations it would take over a year and a half saving every single penny of that amount just to get the basic cost of a sensory room. They really need this now not in 18 months time!

So I started some research. Special needs parents are experts at research.

I took the top ten pieces of sensory or special needs equipment my children need and use on a daily basis and compared some prices. I was expecting some fluctuation in price due to suppliers, delivery and quality but my results shocked even me.

imageTake a basic 90cm tall bubble tube. This is one of the most basic pieces of equipment for any sensory room and many have several of these in, often much taller.
Where you aware these are actually readily available from many high street retailers and online suppliers for a fraction of the price of sensory sites?
eBay for example sells brand new bubble tubes for £24.99 while the equivalent from a specialist online sensory site was £49.99. That is a massive 100% price increase. While the quality may not be exactly the same the effect is.

On the same topic of lights my son is a huge fan of fibre optics. Large lengths of fibre optic lights amaze him but he is equally enamoured by a small fibre optic lamp. On Amazon I can pick one up for as little as £1.24 compared to a large national sensory site wanting £5.99 for the same item. That is a massive increase in price of 383%. It seems the minute you add ‘special needs’ or ‘sensory’ to an item you can get away with inflating the price beyond reason!

I then looked at one of the most common fiddle stress toys on the market for children: the tangle junior. This is a popular toy for children with autism and is often used in schools. They are available in high street stores but the cheapest I found was £3.15 brand new from eBay with free delivery. Compare that to the exact same one on a large sensory site for £5.99 with a staggering delivery cost of £10.80 meaning including delivery the price increase mounts up to an unbelievable 433%! I am beginning to feel ripped off here!

Surely the humble and well known slinky would prove me wrong? Sadly no! While I could easily pick up one in a high street shop for as little as £1 the cheapest I could find from a sensory special needs site was a whopping £4.80, which would you believe was an increase of 380%!

imageOne of my sons all time favourite sensory items is a space blanket. This is a silver blanket used in emergencies to keep warm but the noise, shiny texture and size makes it a common and long lasting sensory item. I could pick this up at a high street car accessory shop for just £2 but sensory specialist websites had the same thing for £4.50, more than double the price!

The kids need somewhere to sit and what better sensory way to do that than on a beanbag! They love them! On the high street from a catalogue company I can pick one up for £24.99 but the cheapest available from special needs sites was a crazy £144! That is a huge increase in price of 476%. That actually makes me feel sick!

A 12lb weighted blanket is approximately £70 on eBay brand new custom made while the sensory sites charge £192 for the same item!

A rainmaker toy can be bought on the high street from a well known early years children’s store for £6.99 while the sensory sites charged £13.95 for the same item.

Ear defenders, one of the most popular items bought for children with autism or sensory processing disorder are available on an online auction site from as little as £1.99 but the cheapest I could find from any special needs stockist was £9.

Finally for a red chewy stick used to support many children who seek oral stimulation I found one of the cheapest places was Amazon at £4.44 for one while the national sensory provider was £8.95 for the same branded item.

In total my basic list could be bought for £140.79 but for a dear as £439.17 an increase of 212%.

Some of you will argue that quality is worth paying for and that these may not be like for like products but in some cases the product was exactly the same brand and specifications!

I have no intention of wanting anyone to go out of business or for staff to not be paid a proper wage but I still can’t help feeling that special needs parents are being ripped off by sites adding the words ‘special needs’ or ‘Sensory’ to an item as a means of inflating the cost.

Of course no-one is making me buy any of these products, in fact you could argue they are luxury and not necessity. What is absolute necessity for my children though is nappies so you can imagine my delight when I discovered a discount supermarket had pull ups to fit my almost eight year old at the amazing price of just 10p a pull up! Topping up my NHS supply of just four a day using the same nappies provided by the NHS was coming in at 45p a nappy. That is quite a difference when you go through up to 20 nappies in a 24 hour period!

Special needs parents, do some home work. There is some amazing specialist equipment on these sensory sites that can not be bought elsewhere but don’t be fooled into thinking you can not find some products on the high street.

Don’t allow yourself to be ripped off!

Learning to be tomato

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I am blessed to have a beautiful house. It has bedrooms,  a kitchen, a bathroom and a family room. It has walls and a roof and doors. I pretty much get to choose who enters my house and I can choose to close the curtains and blinds and doors and have privacy whenever I wish.

Yet in so many other ways my life is open to all, in full view and often seems like my every move is on show. In so many ways I live in a glass house.

When my children were young babies one of them was not gaining weight as fast as they should have been. We were scheduled to have a home visit every single week by a public health visitor for the first year of my twins life. An entire year of having someone see your children at home every week. Some visits lasted up to an hour. The only concern was my daughter’s weight yet our home had to be opened for unexpected visits at all times. That was the start of one wall of my house turning to glass.

By the time my twins were 18 months we had our first referral to community paediatricians. This put us ‘in the system’ and started more home visits by speech therapists, learning support staff and nurses who all entered my house regularly. I felt like I was on show having to keep my house fit for visitors at any time while trying to raise two very young children. A second wall of my house seemed to quickly be changing to glass for everyone to watch how we were living, playing and raising our children, all because they were not reaching milestones as everyone else felt they should.

Eventually the children began nursery and we were expected to attend courses about parenting and autism and attend regular meetings with the nurseries. As wonderful as it was to learn it also opened my family up to more people, and every interaction with our children had to have a purpose and a goal and we were even videoed several times in our own home. Sometimes it really felt like we were animals being watched in a zoo by all the professionals. A third wall of my house had now changed from brick to glass. As more people saw into our lives it got hot at times and stressful. It felt like there was such a lack of shade and privacy at times.

Three glass walls are hard to handle but while one remains brick and the roof remains covered there was still time to be alone. That is until the children started school. In order for their needs to be fully met we had to enter the new arena of school support. This meant multiagency meetings, school meetings, parents nights, school diaries and homework. Right before our eyes the last of our walls changed from brick to glass and our every move seemed controlled by our children’s difficulties.

Now we are in the realm of requiring more support. As the children have grown and their needs increased things like respite, befriending and budgets are now being banded around. Where you aware of how much of your life requires to be put on the line in order to access these things? There is no ‘sign here’ and we will give you it. Assessments are thorough, long winded and often extremely personal. You have to become vulnerable, lay yourself on the line and be scrutinised constantly. You have hoops to jump through and boxes to tick. In doing so the roof of my house, my only privacy and shade left, suddenly became made of glass too.

So my beautiful house has changed from bricks and mortar to a hot, cramped and open-to-all glass house. In order to help and support my children so much of my life and privacy has had to be sacrificed.

So how do we support them through this when our house has constant professionals visiting and calling and we have so many forms to complete? How do I enable them to have a childhood free from stress and invasion when so many people are involved in their care? How do I cope living in a glass house due to my children being disabled?

We are learning to be tomatoes!

We need the support of schools, nurses, occupational therapists, social workers, speech therapists and others besides in order to fully support our children. That means opening up our home, our lifestyle and our ways to many people. So we are going to use this to our advantage.

Tomatoes thrive in a glass house. While everyone watches on they grow, mature and become ripe due to the intense heat and pressure of living in that environment. Tomatoes are sweet, balanced and healthy despite being subjected to intense heat. They are versatile and popular.

Glass house living when you are raising children who have challenges is difficult, but by becoming tomatoes we can use our unusual circumstances to refresh others in many ways from soups, drinks, sandwiches or even tomato ketchup!

Sometimes I feel cut up or squashed but however you look at it I am blessed.

I am blessed to live in a beautiful house even if at times it seems like it is made of glass instead of bricks.

He played with a toy!!

imageThe teachers had a training day and here I was with an entire day with just one of my children. I thought it would be lovely to take him to one of his favourite places to go to…the city centre! This little six year old boy just beams with delight at the very mention of going on a train. How could I resist that smile?

He had it all planned. He has me trained.This is the routine he always does and nothing changes in his wonderful world of classic autism. We go by train to one particular station, we get off and enjoy the escalators and then turn and go into an indoor shopping centre. From there we press every button for every lift, flapping wildly in delight at the thought the doors will open any minute and we visit every floor that every lift has before finally ending up at the food court where he has me knowing to purchase the same meal he always has and sits in the same seating area he always likes. He then spends an inordinate amount of time laughing and clapping at the hand dryers in the bathrooms before running with gusto to the most expensive, prestigious toy shop in town. imageHe knows exactly what he is looking for and I know exactly where he is headed. He bypasses without even a second glance the high prices teddy bears and Lego sets and remote control cars. He hurries past the jigsaws and dolls and the toy animals. He has one place in mind and one place only…he is heading for the lift!

I never have worked out quite what is so wonderful about this particular lift. After watching it for hours at a time you really would think I would have figured this out but I just can’t. But this lift gives me him so much pleasure, more than any toy in the entire shops ever could. He watches the numbers, gets excited at the doors opening and finds great amusement in just looking at it. The total highlight of his trip. In fact until today I wasn’t even sure if he even realised he was in a toy shop.

Can you imagine a six year old not realising they were in a toy shop? Can you imagine a six year old surrounded by more toys than Santa’s grotto and not begging their parents with those four words every parent usually dreads: image‘mummy can I have…’. It is just days until this boy’s seventh birthday and yet he has never once said those words. He has never asked for anything in a shop or even really played with toys. He has no concept of Lego or toy cars and has no ability to read a book. He can not kick a ball and has no understanding what dress up pretend play is. For almost seven years he has been caught up entirely in his own world of sensory play preferring a bowl of water, pressing a hand dryer to turn it on or endlessly watching lifts either in real life or on you tube.

So can you imagine my shock, my amazement, and my emotions when all of a sudden my almost seven year old turned away from the lift for the very first time and looked over at a display of toys! As if the looking wasn’t enough he casually wandered over and decided to ‘play’ with the toys!

Did you hear me…HE PLAYED WITH A TOY! This is epic! This is breakthrough! He suddenly woke to the fact there was a world besides lifts! And he touched a toy in a toy shop!

I scooped him up and kissed him and gave him a high five! I stood there and watched with tears in my eyes! Then without looking so much at a single price tag I grabbed every single toy he had touched and took my son and his array of newly found interests to the cash register!

imageOn the train home something just as amazing happened. It was like all his disabilities left my baby for a few hours and disappeared. It was beautiful. He put his hand inside the bag (he remembered those toys were in the bag!) and he handed me a bag of toy plastic food to open!!
I did not care if that whole carriage got covered in plastic bananas that bag was getting opened! He requested! HE WANTED TO PLAY.

It is so easy to become weary of playing with children. It is so hard to stay patient when they endlessly beg for toys in a toy shop. It is so easy to take speech and play for granted at any age.

Moments like this don’t come to me often. My son has no speech and he has never played with toys. So yes I spent money on plastic toys that were over priced. But you can’t put a price on the miracle I had this week. The miracle that is the simple fact:

HE PLAYED WITH A TOY!

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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.

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imageLike 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.

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