Living in Fear as a Special Needs Parent

The following piece has been submitted anonymously for obvious reasons. No parent should have to live like this but sadly this is the reality for so many parents of children in the U.K. with additional support needs. It is vital stories like this are heard.

Why I live in fear.

Fear is the emotion I identify with the most. Some days it is all I feel.

I have two boys, let’s call them Harry and James. They both have additional needs. Harry is autistic and is not in school, he has been excluded several times and now refuses to go. James is undiagnosed but probably also autistic, he goes to school but has severe anxiety and is very unhappy there. 

Harry has an EHCP, but it is totally inadequate. To get it changed I have to take the local authority to court.

I am afraid we won’t win, and that the fight to get the right help will be too much for me.

Meanwhile he is not in school (because his needs have not been met for so long) and his absences are being marked down as unauthorised.

I am afraid that I will be prosecuted.

I have asked for help from every conceivable agency. We have been turned down for a social care assessment because Harry is not ‘disabled’ enough.

I am afraid that we will be left until we reach crisis point and then suddenly we’ll end up under Child Protection, despite the fact we’re allegedly coping well enough right now.

Sometimes I’m afraid of Harry, because his behaviour can be very violent and challenging.

I do everything I can at home, but I cannot control the school situation which is causing so much anxiety and driving his behaviour. I am too afraid to tell anyone how bad it is, because I’m scared he’ll be taken away.

I am afraid of the effect this is having on James. My happy little boy has become serious and quiet and cries often.

I live on my own with my children and, because Harry is not in school, I am with one or both of them 24 hours a day without respite. Their needs are very different and there is only one of me. I can only ever meet the needs of one of them at the expense of the other.

I am afraid they are being robbed of the happy childhood they deserve. 

I am afraid Harry will end up in the criminal justice system.

He is vulnerable to influence and bullying.

I am afraid that people will not be able to look past his extensive vocabulary and see his problems with social interaction and receptive language and jump to all the wrong conclusions. 

I am afraid that my children will not have the happy future that they deserve, because rather than access to early intervention services we will be pushed beyond breaking point and irreversible damage will be done.

I am afraid that people won’t see my children for who they really are: Sweet, loving and kind little boys that still call me mummy and enjoy watching Paw Patrol, despite their age.

I am afraid for my future.

I gave up a well paid job to be a carer. I have no pension, I don’t own my own home and I have no savings. At least one of my children will probably still be living with me well past the age you would normally expect. 

I am afraid of growing old alone, as the opportunity to meet someone feels like an impossibility right now, and it feels like I have been alone forever.

I am afraid what will happen to my boys if something happens to me, because no one could love or protect them, and no one understands the nuances of their behaviours and care needs, like I do. They would be so frightened, alone and confused if I wasn’t here anymore. 

Some days all I feel is fear. 

Can We Take Autism Acceptance Too Far?

My husband is autistic. Both my children are autistic. I am a huge advocate of autism awareness and acceptance. However I am also a realist and deeply honest and something that has been worrying me more and more is the fact that we seem to be moving perhaps too far in our pursuit of autism acceptance and I am now wondering if the scales are now tipping too far the other way?

What do I mean?

Well for many years the voices of autistic adults were ignored and suppressed. In more recent years, thankfully, this has been changing and some of the most successful advocates for autism are now autistic adult self advocates. This IS a good thing and I don’t want us to stop hearing from autistic adults. I have learnt so much from them and I would love my own daughter to emulate some of them as she matures and grows.

However, there is a balance and with the growth of self advocates there has been a real suppressing and abuse of parents of autistic children (and adults) who have been threatened and bullied because their thoughts seem to clash with the autistic self advocates.

You see autism is a very different experience for different people. For some adults it is just seen as a different way of thinking or a unique way of looking at the world and for them that is absolutely fine and right. Then there are parents, like myself, of children who may never talk themselves and who have extremely high care needs and require round the clock care, diagnosed with the same condition, yet living very different lives. For those families, and I say families because it affects everyone not just the autistic child or adult in these cases, autism is a huge disability and they have a right to voice that too.

Here is a good example of how things have changed:

Six years ago when my son was just four, screaming all day, smearing, non verbal, still in nappies and attacking me I would read posts on support groups which read ‘Help My child is always in meltdown, attacking me and stimming. I’m exhausted and struggling.’ I could identify and I would say so. So many others said similar and the person posting was validated in their struggles while a few would give some ideas of things that had worked for them. Everyone wanted to help both the child and the parent but at no point was the parent made to feel awful for struggling.

Fast forward six years later and the same post in the same group gets very different comments because things have changed. We have been told by autistic adults how much they need to stim and how we need to accept them for exactly who they are and embrace their differences. While that is absolutely right it has also lead to parent bashing and now the same parent gets comments such as ‘how dare you make this about YOU!’ They are called a martyr mum for struggling and some even go as far as to threaten to report them for abuse claiming the child is struggling because they are such an abusive parent. What then happens is the parent feels worse than ever, even less equipped to support their child and even more isolated than before.

Then there is the cases of genuinely concerned parents desperate to help their struggling children asking about therapies in order to help their child make friends, communicate better or cope better in school and they are jumped on by autistic adults who were damaged by certain therapies as a child and who say the parent isn’t accepting or loving their child as they are because they want to change them.

We are fast reaching a point where parents are no longer allowed to be human, or ask for support or want to help their autistic child. We are no longer allowed to mention anything that even hints that our child struggles or that they have any difficulties or we are accused of ableism.

Apparently I am not politically correct and ableist by saying my son has severe autism, he is non verbal at ten, not toilet trained and has the academic ability of a baby. However that IS exactly what he has. He has low functioning autism and his reports even state ‘severe mental impairment’. Stating that he won’t get married, have children, live independently and need 24 hour support all his life is suddenly taboo and offensive because his autism is just a different way of looking at the world and nothing more. According to some self advocates I should have my son removed from my care because I dare to say his autism is a disability. Apparently none of his difficulties are actually his autism and all other conditions. They say my attitude is what disables him and not his autism.

We need the voices of autistic adults, as parents we need to know what to avoid and how best to support our children BUT we need to also be allowed to struggle too. The seesaw of acceptance has to swing both ways.

For a long time parent voices out weighted those of autistic self advocates and that was wrong. Now I feel we are in danger of swinging the opposite way and parents who are sleep deprived, heartbroken at watching their child self harming or struggling with suicidal thoughts, or just exhausted by the same ten seconds of a video on replay for 8 hours, are vilified for daring to say autism can be difficult.

Can we take autism acceptance too far?

If we continue to see it just as a different way of thinking or seeing the world we are in danger of losing educational support for so many struggling children and throwing them into mainstream because ‘autism is not a disability’.

We are in danger of losing vital financial help for families because they are too afraid or programmed not to admit their child’s struggles.

We isolate struggling parents leading to an even bigger chance of vulnerable children being abused and parental suicide.

We cut back vital adult services for those who need it because we see anyone with autism as just different and not therefore in need of support.

We need a balance and an acknowledgement that autism is experienced differently by different people and that’s ok. Some need very little support while others need much more and that includes parents as well as autistic children and adults.

Until we accept that the balance of autism acceptance will never be right.

When You Lose Purpose As A Parent Of A Disabled Child

I’ll be called a martyr mum for writing this. I’ll be accused of being self indulgent and making my child’s disability all about me. That’s all fine by me because I know I am breaching a big social taboo, putting myself on the firing line and making myself vulnerable. So why am I writing this? Well because I am far from alone in experiencing this and others need to know they are not alone.

Let me start by back tracking a little. When I was in high school and I was choosing subjects I was encouraged to think about my future. What did I see myself doing after school? What grades did I need to achieve this and how would I go about progressing my life. In other words what was the purpose of all my learning. I was instructed to ‘make the most of myself’, ‘aim high’, and ‘study hard.’ I ended up choosing an academic path and graduated from university with an undergraduate degree in teaching. I had a career path set out ahead of me.

So ok life didn’t quite go as planned and the sudden death of my dad threw me a curve ball, and though I did graduate I then went on to find employment in lots of different roles as I tried to figure out who I was and what I wanted from life. I worked, I paid my bills, I paid tax and I achieved. Regardless what employment I had, I had purpose.

I then got married and ten years later gave birth to twins. They became my purpose as I raised them to the best of my ability. I expected my children to be my new purpose for their whole lives, perhaps interspersed with some voluntary work or helping in things child related such as play groups and later schools.

It then transpired my children needed lots of support. Both are classed now in different ways as disabled. My son will require life long care.

Suddenly my purpose became fighting for everything he needed. Yes he was the disabled one but with a complete inability to ever advocate for his own needs I had no choice but to take on that role…for the rest of my life.

He’s now ten. I’ve fought for the early intervention, I’ve fought for the right primary school. I’ve fought for services, professional involvement and support. I’ve begged, cried and emailed more times in the last ten years to strangers than I ever thought possible.

And here I am with a severely intellectually disabled son who will require round the clock care all his life and I am starting to lose my purpose fast. As preparations start for high school, a time in life when he should be becoming increasingly independent, developing his learning to prepare for his further and gaining life skills for the workforce, I am left thinking how does any of this stuff relate to my son who is currently unable to care for the most basic of his own needs and still can’t write his own name?

He won’t go to college.

He won’t work.

He won’t handle his own money, live independently or ever drive.

I am expected to be his full time carer until the day I die. I am supposed to carry on doing intimate care on a teenager and grown man, entertain and educate a child who will never know what a wage packet ever is, give him the best and most fulfilling life possible and deal with all the financial implications of life with a disabled teenager and adult.

They never mentioned any of this at the careers conventions I attended in high school.

No-one told me people like my son existed let alone that parents of such children are expected to devote their entire lifetime caring for them full time.

I don’t resent my son. Not for one moment. I adore him, love him unconditionally and delight in every part of him. But where is my purpose in life? Am I really just the person sitting singing nursery rhymes to my adult child and watching Peppa Pig for eternity on YouTube?

I will fight for him.

I will love him forever.

I will do everything in my power to make his life meaningful and enjoyable.

I will give up my dreams, my future and my purpose for him because he is worth it.

I will sacrifice my future for his.

That’s the only purpose I have left now. It’s what being the parent to a disabled child with such high needs as mine requires.

So go on call me a martyr mum. Tell me my son’s disability isn’t about me. My son is severely disabled and relies on me just to get washed and dressed, communicate and live.

My sole existence is caring for him. That’s the only purpose I have and ever will have until the day either he or I passes on. If the pressure and weight of that burden is self indulgent then so be it.

Sometimes forever just feels a very long time.

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.

How do you explain they won’t ‘get better’?

If I had a pound for every time someone told me my children will ‘grow out it’, or ‘be fine when they are older’, I would be a rich woman. People expect you get ill or have difficulties for a short time, you have a period of struggling, and then you ‘get better’. You ‘get over it’ or ‘snap out of it’, or you have an operation or take medication, and then you become ‘normal’ again and function like everyone else.

But what if the difficulties and struggles are life long? What if you won’t get ‘any better’ even if you improve?

It is three years this month since we received my sons first major diagnosis. Though the initial shock and pain has eased I still get sad some days. Because three years on we are still in that same place.

He still has the exact same diagnosis. He hasn’t been cured. He hasn’t went into remission or stopped having his difficulties. I can’t read his diagnosis report and think they are talking about an altogether different child than the one sitting on my knee.

Yes he is making progress. But it is slow. And in spurts. And sometimes we still get regression. Oh are we allowed to mention that? The dreaded ‘regression’ word? Am I allowed to admit that sometimes my children struggle more than they did before? Or lose a skill they previously mastered?

How do you explain they won’t ‘get better’?

It sure looks like my son is getting better. After all for 678 days all he wore was the same red school jumper yet all of a sudden now he will wear other tops? That sounds like improvement. And it is! My daughter has started to master reading and writing. Surely that is her ‘getting better’ you suggest? And yes it seems so.

On the surface my children are both coming on well. We have had a recent successful play date, we have had them taking part in school activities I never dreamt they would ever manage, and two weeks into the summer holidays we have managed some days out and visits to parks. It seems like everything is ‘getting better’. It seems like to some that all is well.

Because people find the life-long bit so hard to understand. People see what they want to see. And after a while they get bored with seeing the same struggles, the same excuses and the same problems. People want to help and get upset when they do help but the problems still exists even when they have done everything they can to support. We look for quick fixes and short-term solutions and life long conditions need on-going, energy draining, never-ending support. It requires a commitment few are willing to make.

It is hard for people to understand why three years down the journey I still get sad some days. Why? Well because some days it feels like I am still where I was three years ago. It hasn’t gone away. And it never will.

There is no cure.

My daughter may ‘get better’ at social situations but it will never quite come naturally to her.
She may ‘get better’ at understanding that not all language is literal in meaning. But idioms and sarcasm will always need explaining to her with patience and understanding.
My son may ‘get better’ at being understood without any speech. He may one day learn to communicate via a device or language or pictures. But he will always have severe communication difficulties to some degree.
My son will never ‘catch up’ with his peers. He is not suddenly going to run a race, or write a story or learn to swim. He may never speak.
I have no idea when they might master potty training.

We are in this for the long haul. When others get ‘bored’ and move on we will still be here. We will still be struggling on.

Doctor’s can’t ‘cure’ my children. They won’t ‘get well soon’ or ‘grow out of it’. It won’t ‘magically disappear’ when they get older or become teenagers. In fact it may magnify.

You may not see them struggle but they do. It may seem ‘cute’ to flap and suck on your clothes at six but what about sixteen? It may seem ok to have your tongue out all the time at six but what about ten? Or thirty?

My children have autism. My son has neurofibromatosis. They will become adults with autism one day and my son will become an adult with NF. His tumours will grow with him and his skin will grow fibromas and patches throughout his life. He will become an adult with social and communication difficulties and a learning disability.

They will ‘get better’ at developing a thick skin and coping with ridicule. They will ‘get better’ at devising coping strategies and becoming a part of society in some way or other.

But they won’t ever ‘get better’ from their life long conditions. And I may never ‘get better’ at coping either.

I may have more good days now than bad. But some days I am right back where I started three years ago. Life long condition means a life long journey. I know some people find that hard to deal with. But you know what? So do I.

When reality hits

I worry for the future. What parent doesn’t?

I booked my kids first ever proper birthday party today. A small affair in terms of what the play centre are used to but a massive leap for us. I used to worry that my children would never have a birthday party, or even understand what birthdays are. Now I am worried none of the children we invite will come. Will my twins notice? One of them might but the other still has no idea what parties or presents or cards are all about.

That worries me. He will be 6 in a few weeks time.

It worries me that he is still in nappies. It worries me that he still has no speech. It worries me that he still can not dress himself, comb his hair, respond to his name, read, write, jump, paint, wash himself, ride a scooter or a bike, understand instructions or use cutlery…all skills other children his age take for granted.

The lady booking the party asked me what 4 things the children would like to eat at their party. She gave us a choice. I asked one of my children and as I looked at the other one a silent tear ran down my cheek. It was unexpected. It was out of character. I try not to cry in public. But at that very moment reality hit me: my son is almost 6 and I can’t even so much as ask him what he would like to eat! He never even came when I called him.

I shouldn’t be with them in a soft play centre; not today. Today is Sunday and on Sunday we go to church. What on earth was I doing on my own with 5 year old twins, nappy bag still in hand, in a soft play centre on a Sunday morning? This wasn’t how it was supposed to be. They should be in Sunday school hearing stories from the Bible, making crafts for me to treasure for years to come and singing choruses. I should be listening to inspirational teaching, having fellowship with friends and worshipping God.

The reality is I just could not face it today. In soft play (at least as quiet as it is on a sunny Sunday morning not long after it opens) we are ‘normal’. The changing rooms are through the same door as the toilets so no-one has to know I am still going to the ‘baby room’ with children more than half my height. As my son buries himself in the ball pool no-one sees that he is licking them all and flicking them in the air to see the shadows they make as they fall back down. The noise of other children playing and the music drown out his squeaks and squeals and the noise of him flapping his arms against his chest. Lots of kids take off their socks even when they are not supposed to so he sort of gets away with that too.

But once we leave reality hits once again. I have to lift them both into their car seats. I have to strap them both in. I have to type the pass code into his iPad because he still has no concept of numbers or what to do. The entire way home (thankfully less than ten minutes) I hear just one word, and it isn’t from the lips of either of the children! Isaac has found an application with numbers that if you press them the name of the number is said…again…and again…and again. It could be animal names, names of people, letters, anything really. He just likes the sound. 2,2,2,2,2,2,2,2,2,2,2,2,2,2,2,2,2…….this is today’s ‘sound’. It may be tomorrow’s too. And for the rest of the week. Perhaps even the week after too. He has no concept of what it means, he isn’t going to repeat the sound or even start to write the number…it is just a noise repeated over and over and over…until you feel sick and want to throw that awful thing in the bin.

The reality is it is THE only thing that he will do for any length of time. And I mean even a few minutes. Other that eating it is the only time he sits still. So the iPad has to stay…2,2,2,2,2,2 included!

I worry what he will find to do tomorrow. I worry that one day there will be no red school jumper in his size for him to wear. I worry how I will continue to lift him in and out the bath, in and out of car seats and his buggy as he continues to grow and get heavier by the day. I worry that he might never ever speak. I worry how people will look after him. I worry I might one day be changing nappies on a teenager or grown man.

Right now I am wondering if he even cares about having a birthday party or if he would be happier alone in the play centre licking the balls and flapping his chest.

Then I smile knowing if nothing else he will love his chocolate birthday cake and whatever the meal is he will eat it like I haven’t fed him in the last 6 years.

Reality hits: I have a beautiful boy and he has made it this far. Whatever the future has we will get through it together. I booked him a birthday party today and there was a time I never thought that would happen.

That is the reality of life with disability: knowing there is still a long long way to go, but knowing you have come a long way too.

When reality hits.