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.

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To The Parents Of The Disabled Child Who Doesn’t Look Disabled

Dear fellow parent,

I understand.

I understand what it’s like to be in the park and others wonder why you are sticking so close to your child, perhaps guiding them or supporting them to do what other children much younger are doing easily. I know what it’s like to see parents and children stare at your child, laugh at them or worse…walk away from them.

People would understand if your child looked different, if you were pushing them in a wheelchair or if they had a walking frame. I see your child’s disability even when they don’t look disabled.

I understand.

I have a child just like that too.

It’s the expectations isn’t it. They look fine so why are they not talking like others expect, acting age appropriate or joining in with others? The assumption that ‘looking fine’ means they are ‘fine’ and that we are the issue not the child. Oh do I understand that!

Our parenting is questioned just because our child doesn’t ‘look disabled ’ whatever ‘looking disabled’ is even meant to mean? People think we are over protective, over bearing and causing the problem. Yet they don’t know what we know. They don’t see what we see.

They can’t see autism so they don’t know it’s there.

They can’t see global delay or learning difficulties so they must not exist.

They were not there when you received the genetic diagnosis so they don’t know.

They haven’t experienced the epileptic seizures so therefore you must have made them up.

They don’t know anything about the myriad of specialists you have visited or the volume of appointments your diary is full of.

They see your child and make assumptions based on the fact they look ‘normal.’

I understand.

You dare not mention that your child receives disability money. You know from experience that you will be accused of using your child to get money.

Why? Just because your child doesn’t ‘look disabled’ so therefore according to society they can’t be disabled.

I understand.

You see I have a child like that too. I get the sideways looks when I hold my almost ten year old tight as we walk. I hear the sniggers as he flaps and makes baby noises as we walk down the supermarket aisle. I know the judgement at the school gate when my child is the different one yet he looks just like any other child.

For some reason disability is meant to be noticeable or else it must not exist. People have this strange notion that if something can’t be seen then it must not be believed.

I know how that makes you feel because I feel it too.

We should not need to justify our child disability just because they don’t look disabled as people expect. It shouldn’t matter what someone looks like and people are so quick to judge.

So know you are not alone.

Know that I understand.

I am right there with you.

You do what you need to do for your child and know I support you.

Together we can raise our beautiful disabled children who don’t look disabled and hopefully one day others will understand too.

Yours lovingly,

A mum of a stunning but very disabled little boy.

This blog originally appeared here

I Will Never Walk My Child To School

I’ll never walk my child to school

I get to buy him uniform. I get to pack him snacks for playtime and fill a bottle of fresh water for him. I get to buy him a nice warm winter coat, new footwear, and a nice new bag.

But I’ll never walk my child to school.

I’ll never get to wave to him as he joins his line for the first time. I’ll never get to say good morning to his friends, kiss him goodbye at the gate, exchange pleasantries with other parents or pop into the office with his forgotten pencil case.

I wish I could walk my child to school.

It’s not the biggest thing to want. It’s not expensive or overly time consuming or rare to see. I just want to hold his hand or walk beside him in the morning and at 3 o’clock like other parents get to do with their children.

I never had it at the nursery stage but somehow that didn’t seem quite as bad. He’ll grow up never seeing my face just before he enters school to be away from me for six hours. Whatever his day was like I won’t ever be the smile that greets him or the hand that takes his as he leaves school behind for another day.

He’s still young and he needs me. I should be walking him to school.

There’s a wonderful school so close to us. Not too big, not too small, with such a friendly, welcoming ethos. I should have been buying burgundy jumpers to match his sister and seeing him laugh with friends in the school playground minutes from my house. When I sit in the garden listening to the children in my daughter’s school play outside I close my eyes and dream that my son is there too, kicking a ball about, chatting to friends, sharing life.

Instead I say my goodbyes at the front gate handing my son over to strangers who change every academic year. I strap him in a car seat, kiss his tender little cheek and tell him I love him. He never waves back. He rarely even looks at me.

I long to walk him to school.

We would splash in puddles. We would laugh when the wind blows our umbrellas inside out. I would listen intently as he told me about his day, his lessons, and who was star of the week. He would nag me to leave him at the gate instead of the line as he got older and we would get excited in winter walking in snow and making footprints. I know this because I get to do all of that, and more, with his sister.

Walking your child to school is so much more than just a menial daily chore. It’s bonding with your child, giving them priceless security and routine, its allowing your child uninterrupted special time to de stress and transition from school to home. It’s being familiar with their school, knowing the office staff by name,smiling at their teacher and having a chance to sort things out quickly because you are right there where you should be.

Is it wrong that I want that for my son too?

To know he has arrived safely, to walk home myself feeling at peace, to know where he is and that he is safe, to feel comfortable with the people who are looking after him and teaching him.

I’ll never walk my child to school and that simple, everyday loss is so hard to deal with sometimes.

My son has complex needs so has to go by transport to school many miles from home. I correspond with the school via short sentences in a diary. I don’t know what door my child enters the school or exits or if he even lines up outside. I don’t get to see his playground, his friends, or the staff. I have to assume he has arrived safely and he is well even when the weather is awful or I hear of accidents on the route. I can’t pop in with a forgotten snack or a form and even when I call them my voice or name isn’t familiar.

I wish it was different but it’s not.

Please don’t take it for granted when you walk your child to school. Some parents, like me, will never know that simple joy.

Today is just another morning that I never walked my child to school.

Dear Special Needs Parent…Please find time to cry

Dear special needs parent,

I can see behind that false smile, the reply of ‘I’m fine, thanks’ and your happy photographs you post on social media. I need you to know something very important as a parent to a child or children with additional needs: it’s ok to cry.

When you pick that child up from school to go to yet another appointment but you feel you are not getting any closer to answers; please find time to cry. I know you want to ‘brush it off’ as just another day and get on with things. I know you need to ‘keep going for the sake of the children’ as you add another outpatient appointment in your diary for a time you know will clash with the school pick up of your other children but you just don’t have the courage to say so.

It’s ok to admit it’s all draining and never ending.

You don’t have to be strong all the time.

Please find time to cry.

When you feel you are the worst parent in the world dragging your crying child to school because they are not coping and you want to help them ‘sort it out themselves’ because you know ‘this is just another incident and tomorrow there will be something else’ but deep down you still doubt if you are doing the right thing. When you worry about their mental health every bit as much as you worry about their physical wellbeing but you struggle to get anyone to take you seriously.

Don’t let the parent guilt consume you.

Don’t ever feel you are alone.

Please find time to cry.

When your child with communication difficulties is attacking you and won’t stop screaming. When you have missing hours you know nothing about and continually worry something has triggered or stressed them but no-one has communicated that to you so you can’t ‘sort it out’ and ‘make it right again’ like you always do. When you feel like you daren’t breathe incase one of your children has another meltdown and you can’t even use the bathroom without an audience.

It’s ok to want privacy.

It’s ok to feel you have lost control and you can’t make everything right for everyone.

Please find time to cry.

When the system grinds you down. When you feel scrutinised and judged by schools, professionals, and the general public. When you are heart sick of writing forms about your child’s struggles because you are trying to see a brighter future than everyone forecasts. When you no longer have any control over where you child can be educated or what therapies they can get because your child’s needs mean someone else feels they should make these decisions for you. When you feel robbed of everyday life experiences and see reminders of this everyday in social media posts and family occasions, please find time to cry.

It’s not a weakness to cry.

There is no shame is saying ‘this is hard’.

In fact by ‘holding it all together’ you are actually falling apart more than you realise.

So find time to cry.

It doesn’t mean you don’t love your child.

It doesn’t mean you are not accepting their condition or diagnosis.

It doesn’t mean you are any less.

It doesn’t mean you are not coping.

It means you are human.

Dear parent if a special need child or children: do yourself the best favour you possibly can today; find time to cry.

I promise you you will feel better for it.

The top ten summer stresses for special needs families


At first it is lovely to not have to cope with the school run or never ending packed lunches to make. It is a novelty to be able to put the TV on and not worry that the kids will be late or that they won’t eat breakfast. I am delighted to not have to wash and iron uniforms (who am I kidding I stopped ironing them by the end of September!) and find matching socks before 8:15am.

These are all great things to get a break from and I do not miss carrying my screaming child out to his taxi daily. But I would be lying if I said as a special needs mum that summer holidays were all wonderful. They are not. I find so many things stressful about having my disabled children with me all the time. I am not alone either. 

Here are the top ten summer stresses faced by so many special needs parents today:

1. Lack of changing facilities. 

I want to take my children to soft play, parks, swimming, museums and day trips. The problem is I have two children who still need nappies changed and both are well over the age of being able to access ‘baby change’ facilities. I need changing places toilets and these are so hard to find. For so many families this lack of toilets prevents them accessing places all year round but it is magnified during summer when children want to be out and about in lovely weather and families want to go out together making memories. None of my friends whose children have no special needs seem to even think about access to bathrooms and it upsets me that such a basic necessity for special needs families is so hard to find.

2. Lack of disabled trolleys in shops.

My son has profound autism and other complex needs. I can dream that one day he will walk around holding my hand helping me but it is a pipe dream. In reality he will smash things, scream, run away from me or wander out the store completely. I need to shop even when my children are not in school. Although online shopping is handy there are days I just need to be able to pick up bread and milk but something so simple is so difficult, and often impossible, if a store does not have a suitable disabled trolley for my son. I have lost count how many shops I have had to walk out before I bought anything because there are no basic facilities for my son. In 2017 this really should not be the case.

3. Lack of playing facilities in parks.


My local park is wonderful. It has a swing seat my son can use and a wheelchair accessible roundabout. Sadly this is NOT the norm and if my son is in his wheelchair I often find myself unable to even access parks due to cattle grids and tiny gates and that is before we even get to see if there is any equipment he is even able to use. Parks should be inclusive not just for the mainstream elite. The stress of not knowing your child can access something as simple as a swing in a play park is common for so many special needs families. 


4. Access

Yes even in 2017 there are shops, play centres, public buildings and restaurants that I still can not enter as my son is unable to climb stairs. Many shops also have displays so close together manoeuvring a wheelchair around the shop is impossible. I am denied access to places my son should be able to visit and I should be able to enter due to inadequate disabled access. The United Kingdom is far from disability friendly sadly.


5. Autism friendly hours that are not autism friendly times!

I am delighted that more and more places are putting on quiet hours and autism friendly times. However as wonderful and inclusive as this sounds they are often at times that are so difficult for my family to access. Early Sunday mornings for example are of no use to my family as we attend church and late at night is no use when I have young children who need routine. Instead it would be better to have a quiet day or autism friendly day once a week that enabled many more to access and enjoy places that otherwise exclude so many. 



6. Lack of respite.

Being nurse, therapist, attending appointments and getting very little sleep is draining. The majority of special needs families have no summer respite and little support through the long weeks of summer. This causes resentment for siblings who fall to the wayside and can put pressure on relationships and cause many carers to struggle with their mental health. For special needs families school offers necessary respite which they can not access all summer long. It makes for a very long summer indeed.

7. Inability to use household items due to sensory issues.

I dare you to use the hoover in my house over summer when the kids are home! Or the hairdryer or washing machine. These are items I use daily when my kids are at school but using them in summer causes the kids to scream and lash out in real pain. Parents of children with sensory processing disorder walk on egg shells all summer just trying to keep their house respectable without triggering continuous meltdowns.

8. Lack of sleep.

I can cope when my son does an ‘all nighter’ when he has school as I can rest or nap while he is out. When your child or children need 24 hour care and you get very little sleep that has to take its toll eventually. By week three of the holidays I have no idea of the day of the week or even my name as sleep deprivation kicks in big time. 

9. Lack of support.

Therapists vanish in the summer, as do health professionals and social workers! While I fully respect everyone needs a holiday it can be so disheartening and stressful as a parent to be left without any support all summer long. It is also detrimental to the children who require continuity and routine. Living with a non verbal frustrated 8 year old for seven weeks with no speech therapists is stressful! 

10. Isolation

Places are noisy, busy, expensive (carers allowance is a pittance!), and the general public can be ‘challenging’, making trips out of the house so difficult. Add to that the stress many families face trying to get their special needs child off of technology and even into a garden and you have some idea how stressful summer can be. For thousands of families this leads them to be isolated in their own home, forgotten and abandoned due to having a disabled child. 
With time, money and planning so many of these stressors could be overcome. A little respite, businesses and community groups installing changing places toilets and more shops purchasing firefly trolleys suitable for disabled children and life could be so much different. 

Have a think. What could you do to make summer easier for a family with a special needs child?



This article first appeared here

I put him to bed some nights and cry


Loving my son is easy, living with him is not.
Some would say he is controlling, a bully, self centred and aggressive. These would all be correct.
He is also frustrated, anxious, stressed and agitated.
No anger course, or therapy or counselling will help him.
He is 8 and can not speak. He is still in nappies. He has no sense of danger. He can scream for hours, smear, attack and demolish all in one day.
Yet he can laugh a deep laugh that is so contagious he makes everyone smile. He can flap and find utter delight in lift doors opening for hours.
He is the apple of my eye and the delight of my heart but some nights I put him to bed and cry. 
I cry for the life he is missing out on: The lack of friends, the inability to read and write, the fact I have no idea when or if he will ever be toilet trained. I cry because he is misunderstood and judged so much. I cry because he can not tell me anything like how he is feeling or what he likes. I cry because he is so vulnerable and that scares me. I cry through exhaustion having to constantly guess what he wants and why he is so upset. I cry through years of sleep deprivation, lack of support and the stress that something as simple as an open door makes him throw himself down the stairs in distress.
I put him to bed and cry because I do not want him to see my tears. I never want him to feel he disappoints me. I never want him to feel rejected or unloved. 
But I need to let the tears out. Pretending this is ok is not helping anyone.
My son has severe autism and it is very hard. My son has neurofibromatosis type 1 and that scares me. My son is vision impaired and that worries me.
His list of diagnosis and difficulties is comprehensive. He requires 24 hour care and relies on me for everything. He will need care all his life and his condition is progressive and unpredictable.
He brings me great joy but caring for him exhausts me.
Loving him is easy, living with him is not.
I love him more than words can say but I put him to bed tonight and cried.

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50 Reasons Why We Still Need Autism Awareness Month

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You are probably thinking this is going to be a heck of a long blog with a title like that. What use would that be? I have no intention of boring you so I will cut to the chase.

If you have ever wanted to know why we still need autism awareness days or months or awareness days for any other type of condition here is why…

These 50 comments are all from the general public and each and everyone of them were actually said to a family with a child with autism or additional needs.

This is why I keep writing about autism. This is why we need people to talk about it.

1. Now your child has glasses it will cure his autism.
2. The best way to stop your child from smearing is to change him more often.
3. Your child’s difficulties are because you worked while you were pregnant.
4. Your children have autism because you don’t love them enough.
5. They probably have autism because they are twins. Twins always have problems you know.
6. It is because you had post natal depression. You are to blame for your child being disabled.
7. Your child is like that because you are not strict enough with them. They would never be like that if they were mine!
8. Are you sure they have autism? They don’t look autistic to me!
9. Vegetables, your child needs to eat more greens and then they will be fine.
10. It is because you breast fed them for far too long!
11. Your child needs to control themselves better.
12. Are you sure it isn’t you with the problem? Have you thought about counselling?
13. You must have really done something terrible is a past life to have a child who is blind.
14. Have you tried praying more?
15. She is non verbal because you don’t speak to her often enough.
16. He is just lazy.
17. They never had anything like that in my day you know.
18. He’ll grow out of it.
19. Have you not thought to use essential oils?
20. They just need a good smack.
21. Once he starts talking you will never know he has autism.
22. Disability is just a excuse for poor parenting.
23. Your child has that because you neglected them.
24. It is learned behaviour because their brother has it. They are just copying you know.
25. He just has too much screen time. Take his iPad away and he will be fine!
26. All kids do that.
27. It’s just because you have anxiety. That makes a child disabled.
28. She isn’t talking because you are deaf so you can’t teach her!
30. He’s fine in school you know!
31. Fillings. If you have fillings in your teeth it makes your child disabled.
32. Peppy Pig is what makes your child autistic.
33. You need to feed them the right stuff. Organic, gluten free, sugar free, wheat free…
34. It was probably for the best you had a miscarriage as you would not want another child like your son would you?
35. Cool they have autism! What’s their special gift?
36. He’s always fine with me you know!
37. It’s because you and your husband separated.
38. There’s no chance he has autism because he gives good eye contact.
39. There’s no chance you have autism…you have a job!
40. Are you sure they actually got diagnosed with that?
41. You just sent her to the wrong nursery!
42. Vaccines. I got my child immunised and made them disabled.
43. They just need more fresh air.
44. Dirt. My house is too clean and that has caused my son’s autism!
45. Have another child. If he has someone to play with he will be fine.
46. She can’t have autism, she’s a girl!
47. She is way too social to have autism you know!
48. You do way too much for him. Doing that makes them disabled.
49. You just want people to feel sorry for you because you have a disabled child.
50. Mixed race marriages. It isn’t right and that is why your child has problems!

Are you shocked? Angry? Upset?

So was I.

Ignorance is still rife and until people realise how wrong and hurtful comments like this are I will continue to write about the reality of my life.

You may have heard about autism but do you really know what it is?

It is alright to not know but it isn’t ok to say any of the things above.

I just hope and pray that every awareness day, every awareness month and every blog I write goes some way to dispelling some of these awful comments.

Until then I will talk about autism in all its reality, splendour and wonder.

Because I never want these two to ever have to hear any of those 50 comments, ever!IMG_0725