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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Breaking seven years of silence: how a mute ten year old found a way to let her voice be heard

I asked my ten year old if I could share this story, because after all it is her story not mine. She answered emphatically ‘yes’ adding that ‘make you you say that ‘everybody’s voice needs heard mum’ So I’ve made sure to get that bit in first.

So let me give you some background:

This is Naomi, my daughter. She is a twin with her brother having very complex needs including severe autism, epilepsy and severe learning difficulties. He can not speak verbally, which makes her statement about ‘everybody’s voice needs heard’ even more significant and powerful. Naomi herself is also diagnosed autistic with a further diagnosis of anxiety and an eating disorder. She also has a condition known as selective mutism: in many situations Naomi is so overcome with anxiety she is mute.

One of the places she has always been mute in is school. She started education at just two and a half and when she was first enrolled in nursery they didn’t believe me when I said she had a wide vocabulary and spoke clearly. She showed no signs of that in the nursery setting and in her two and a half years at two different nurseries she never once spoke a word: not one single word. She never sang a nursery rhyme, never answered a question and never even spoke to any other child. She smiled, cried and took part in some activities but she just never opened her mouth. By four she was formally diagnosed with the speech condition selective mutism.

At home she continued to gain language quickly and used it confidently. Her voice was clear, strong and beautiful and it was hard to imagine the idea that no-one else was able to hear this.

Naomi started school at five and continued to go all day at school without speaking. While her school were very inclusive and supportive, despite all sorts of inventive ways of easing her anxiety, Naomi continued to find it too difficult to speak. She did have one friend and by her second year in school she slowly began to speak to her one friend, though only outside of the classroom walls, primarily in the playground. This was only by whispers so that no-one else could hear.

She would tell me that she wanted to speak but whenever she opened her mouth the words just didn’t come out. She said it was like they just disappeared. She learnt to adapt to a life of mutism is school and her peers gave up on trying to get her to speak by half way through year 1.

Nativity plays came and went, as did class assemblies, but she could never have a speaking part. I knew she could speak but I seemed to be the only one. It was like we had this secret life at home where she would talk away but outside the home her voice disappeared and she lived a life of silence.

She would be given reading book after reading book yet whatever teacher she had they never once heard her read. Her year 1 teacher hoped her year 2 teacher might find the key to open her up. She didn’t. Her year three teacher was fantastic, but still Naomi was unable to speak. Her year four teachers had no luck either. No-one failed, it just wasn’t to be. Naomi wasn’t ready.

Naomi would often say how she would like to answer her friends, or join in games or read in class but mostly she just became used to the fact ‘I don’t talk’ and it became just how it was. Then one night three weeks ago she came out of school and I knew something was wrong. She cried the whole walk home. She cried most of that evening and the next night and the next night too. It was the week before Burns night, a traditional celebration in Scotland of a well known poet. Schools often mark the occasion by having children recite Scottish poems and Naomi’s school were no exception. This was Naomi’s fifth year of having such a task, every year prior being met with ‘I don’t talk’ and that was that. But this year something changed: Naomi loved the poem so much she wanted to memorise and recite it like her peers!

She actually wanted to speak!

But wanting to speak wasn’t enough. She still could not bridge that mental and physical gap. She couldn’t overcome her all consuming anxiety. That was the cause of the tears: the conflicting desire of wanting to do something so badly but knowing she couldn’t.

It was heartbreaking.

Then one morning I had an idea. I suggested it to Naomi and her tears turned to excitement. When the class were asked to chose a partner to practice their poems with and no-one chose her she just sat alone silently learning the poem to herself. She knew why her peers hadn’t chosen her and she wasn’t upset at them.

Naomi practiced. I practiced. I felt like our secret was closer than ever. Together we had a plan, though I had no idea if it would work.

Then three weeks ago, on Monday 21st of January, the night before my birthday, Naomi and myself performed that poem as if we were on that stage at school. Naomi was relaxed in her pyjamas in her own room. She spoke clearly and confidently having spent hours memorising the task by heart. On the chair in front of us was my iPad and I pressed record.

As we watched it back Naomi smiled and said simply ‘I did it.’

I asked if I could send it to her Head Teacher. She agreed and requested I also share on my Facebook page. But she wasn’t ready for her teacher or her class to hear her yet.

The next morning she woke and announced suddenly ‘Mum, I would like my teacher to hear my voice now. Can she see the video today?’

So I took her to school five minutes early and her teacher watched the video directly from my iPad. She unashamedly cried. She asked Naomi if she wanted the class to see it. Naomi smiled and nodded.

The following day, on Wednesday 23rd January 2019 a class of nine and ten year olds in a school in Scotland witnessed something very very special. As the pairs of children in turn recited their poems to the class and Naomi sat in silence cheering them on, the teacher ended the session with a little clip that changed everything.

For the first time in five years Naomi’s classmates heard her voice for the first time ever, as she casually and effortlessly recited the same piece they had all been learning, via a video playback of her recording at home.

Some children watched open mouthed, some cried. Every single one cheered and many hugged her.

Two days later, with Naomi’s approval, the Head Teacher showed that video to her entire school. Naomi told me staff and children were in tears.

Naomi gained every award going that week: star of the week, Head Teacher’s award and even an invite to have hot chocolate with the Head for going above and beyond!

Two weeks have since passed. Naomi is still selective mute. She’s still very anxious and still autistic. She hasn’t spoken yet in class directly or to her peers.

But they, and now the world, know that she can.

If and when she is ready she may one day speak in person. There is no pressure.

The fact is she did it. She broke seven years of silence in the only way she could. She proved that her voice counts. She proved she could.

Her message is strong and powerful and needs shared.

‘Mum, make sure you you say that everybody’s voice needs heard.’

She says it better than I ever could.

Here is that special video. Here is the moment my daughter broke seven years of silence.

Can You Be Severely Autistic And Still Have Empathy?

I admit I have had to get professional support to help me as a parent of a child with severe autism.

I didn’t expect to have a child who could not talk, or who would have severe learning difficulties or scream for hours. I was unprepared for the lack of sleeping, the rigidity of routine, the huge struggles to communicate and the life long high level of care he needs.

I also didn’t expect the professional misunderstandings either.

Please don’t judge me but in my endeavour to help my son I assumed that what these highly trained professionals were telling me was correct. Things like:

That behaviour needs stopped because it’s controlling.’

‘It’s extreme sensory seeking and you can’t let him do that!’

‘He needs to be taught strict boundaries.’

‘His behaviour is having a negative and destructive impact on his sister so you need to do somethings out that.’

‘It’s because he has severe anxiety and needs to be in control.’

‘You need to learn to accept he has severe autism and this is just how it is.’

Now I am not saying these are all wrong, or don’t apply to my son, but recently I have been thinking about my son differently though I had no idea how controversial my idea would be.

Could my severely autistic son’s behaviours actually be due to him being very empathetic?

My son has no functional speech. While he can say ‘mummy’ if asked to repeat it or asked a simple question he understands like ‘whose car do you want to go in?’, and he can say ‘no’ when asked simple direct questions using vocabulary he is familiar with, he can’t tell me why he does certain things or why he gets so distressed about other things.

For years people have been trying to ‘guess’ based on their knowledge of autism, or learning difficulties or sensory issues. I was told my son was locked in his own world, consumed with his own thoughts, controlled by anxiety and aware only of his own needs.

When I suggested recently I thought he was actually the loveliest, most empathetic, most caring little boy ever I was looked at as if I had lost the plot.

I shared with a mental health nurse who specialises in challenging behaviour, severe anxiety and learning difficulties the story last week of how my son woke up very early and was making a huge amount of noise and mess in the bathroom removing his myriad of bath toys he has to have in the bath, spilling water everywhere and waking everyone up. Of course I could predict that she suggested he had huge unmet sensory needs and I should try and incorporate more water play to his schedule. It was also suggested he had some type of clock in his room to master when he could get up so as not to disturb everyone else, and other ways to curb and mould his behaviour.

Then I suggested something radical:

I think my son was actually showing concern for others, wanting to help and showing love!

The previous evening I had went over the next days routine. It had started with his sister having a bath, something I knew my son struggled with. My non verbal severely autistic son wasn’t trying to sensory seek, or deliberately wake us all up or control everything: he was taking his toys out the bath to HELP because he CARES about his sister and thought about her the moment he woke.

I started to think about some other behaviours. Could those actually be because he cares deeply for others?

He screams if his sister has socks on when wearing pyjamas. Could it be he himself finds socks uncomfortable and doesn’t want his sister to experience that?

He becomes very agitated if I don’t remove mugs of tea or coffee or glasses of juice immediately after meals. Could it be he knows these could spill and he’s trying to protect us all from wet clothes and wet floors?

He has to be first in the house and first out the house every time or he self harms and screams. Could it be he cares about us all so much he is wanting to make sure everything is ok before the rest of us venture in or out?

He spent years becoming so agitated and distressed at open doors, mostly outside house doors that he felt should be closed? Could it be he wanted to protect others from intruders, the weather or noise? All things he himself struggles with so would naturally want others to be protected from.

He has to have a bath at 6pm regardless what else is going on around him. Could it be he is trying to help us all feel reassured and comforted with familiarity against a world of chaos? Could he be bringing predictability back to help us all feel calmer and more secure?

Of course I can’t say for definite if my interpretation of my son’s behaviours is true because he can’t tell me. However looking at things from the viewpoint that he cares and loves us all and wants to help us has been life changing for him and everyone else.

We used to joke in my house that life revolved around my son. His needs had to come first and we all had to learn to be empathetic and adapt to him. But maybe, just maybe we are doing children like my son a huge injustice.

Can you be severely autistic and still have empathy?

Can you be Scottish and still love English tea?

Why of course you can and the sooner we all realise that severe autism does not mean they only think about themselves then the better things will be for everyone.

Assume people care. Assume they are trying to help.

Always try and see the positive even if others tell you not to.

My Husband’s Story: I didn’t even feel I was normal

My name is Nigel and I was diagnosed with autism at 59.

I always felt I was different right from my teenage years. It’s hard to describe but I didn’t even feel I was normal.

I hated school. It was a real struggle and so hard. I didn’t go to anything at school, clubs and such. I had no true friends. I was just different and invisible. I felt like I was always passed over. The only subjects I was remotely good at where physics and chemistry. Maths was a mystery but then I had a PE (physical education) teacher teaching me who had no idea about maths herself. I never did understand that one.

I was horrendously bullied at school. Every single day. Kids beat me up, kicked me and pushed me. All I remember about school was being black and blue from the other kids.

I think my difficulties and struggles were overlooked as I had a physically disabled sister who was number one priority in the house at all times.

I collected stamps for years and liked photography but it was frustrating as with just 50p a week what can you really collect?

After school I worked in a supermarket for years. It was just a job; somewhere to go really. I had work colleagues but no friends there either. I only left that job when I moved from Wales to Scotland to do a course. I had no idea that would be the last job I would get for many years. I can’t do forms, I detest them with a passion. I have a speech impediment which means I’m rubbish at interviews. I can do the job but few ever saw that bit.

I hate change of routine. If I do the grocery shop any day but Thursday I get so confused. I struggle to shop anywhere but Tesco as other shops are laid out differently, smell different, look different and don’t sell Tesco products. I would be wondering ‘will I like that?’ , ‘Will it be as good as the Tesco brand I know?’, ‘where is the the sell by date?’ I know where that is on the Tesco product.

If something doesn’t work in my routine I am so thrown out not just for that day but days later.

If I am geared in my mind to park in one place and there is no spaces there I can’t think of anywhere else to park so I go home. That may sound strange but it’s just how I am.

It wasn’t until my son was diagnosed with autism when he was three and I reluctantly went with my wife to a course that I started to think the course was talking about me and not my son. It was like an awakening to think maybe I actually had something that was making me different after all.

People always had the attitude ‘oh that’s just Nigel’ and would ignore me, ‘he doesn’t know anything’; people never give me any credit.

I have been depressed since my teens but no-one really thought about it. They would say ‘what do you have to be depressed about?’ I’m been on medication for 5 years now. I’m still depressed it’s just some days I have good days and others bad days.

I have two autistic children but that doesn’t mean I can help or understand them any more than my wife who is not autistic. In fact caring for them exhausts me due to my own depression and autism and the fact I have a hearing impairment.

I hate being interrupted and the children interrupt with demands, screaming and needing attention so much. It gets too much. If I cook dinner and you interrupt me by phoning I can’t concentrate to cook dinner. I just can’t.

I’m allowed to struggle. After all if I didn’t struggle with certain things in certain areas I would never have been diagnosed would I? Isn’t that the whole point of autism?

But I have a strong faith, I love my wife, I adore my kids, and I get by.

Maybe if I had been diagnosed sooner things could have been different?

I don’t know.

I just hope my children don’t struggle like I have.

I hope the world is kinder to them.

Nigel.

The Biggest Difference Facing Families Affected By Autism

I have seen so much on social media recently about the differences affecting autistic people, from their traits, their treatment, their support, and access to suitable education. The great divide between those who have loved ones with ‘severe’ autism often accompanied by challenging behaviour, significant communication difficulties and learning difficulties and those whose loved ones have one foot in the non autistic world and one foot in the autistic world, often feeling the need to mimic and mask risking their mental health.

Which of these groups need the most support and how they access that support seems to be a whole area of debate.

As a parent to one child whose difficulties are very obvious and another child whose difficulties are perhaps initially more difficult to spot I read with interest what other families in my country and further afield are experiencing.

In doing so I have came to this conclusion: The biggest difference facing families affected by autism isn’t actually how you experience life with autism but actually WHERE YOU LIVE.

Location matters, even more so when it comes to experiences with autism.

Despite national policies and laws on autism things are very different in different areas. Everything from your educational experience and support, access to CAMHS (child and adolescent mental health services), OT (occupational therapy) support for sensory issues and fine and gross motor skill development, support groups for families, access to speech and language, and respite vary from one part of the country to another.

This results in families feeling cheated, jealous, angry and frustrated as they hear of other children or adults getting support that they need just as much, sometimes more, yet can not get.

The geographical disparity across the country, often referred to as the postcode lottery, is failing families, failing autistics and failing professionals who are fighting for funding to provide a service they are trained and equipped to provide yet restricted by lack of funds and investment.

I asked a few families about their experiences of services and professional support throughout the country and here are a few comments. (Names and locations all hidden for protection)

With the exception of an initial visit from the Educational Psychologist as part of the initial diagnosis process, we have been denied all services at some point over the years. Even when sight loss occurred because of anxiety no services were offered.”

I have had a good service compared to many others. Had access to speech therapy although after cuts had to contact head of service and MP (member of parliament) to chase for more which was then granted. Seen OT but had to go private to see specialist that can actually offer help. Not needed camhs but hear its a nightmare to get. Directed to parent support groups for autism and given pre school support from asd service. I have parents in the same nursery as my child that fall under these LAs(local authorities) that have to fight every step.”

“We have a NAS (national autistic society) support group which have been a godsend. Plus the school my child is at puts on workshops which have proved really interesting. We were told speech therapy would continue in school but it hasn’t . They’ve had no speech therapists. One started in January so I’m hoping that means he’ll have access now.”

We were denied occupational therapy even though we’ve applied 3 times with other professionals recommendations.”

We were refused any support from wheelchair services due to not meeting their requirements for a government funded special needs buggy, despite our doctor asking them to reconsider. Their reasons were because his joints don’t dislocate and that he isn’t medicated daily. Obviously this didn’t help us in getting my 6 year old Autistic son, who struggles with pain from hypermobility, to and from school every day. Luckily for us, the parents at our sons school held a fundraiser and raised enough money for us to buy one ourselves.”

We have been denied any form of dealings with CAMHS even though my son kept threatening to kill himself at 8 years old. Not a severe enough case apparently.”

“Speech therapy; not denied but rubbish and one SALT left my house saying she couldn’t help my non verbal 4 year old!! Thankfully he gets a better provision via SEN school now. Occupational therapy – this is NOT commissioned when there is an Autism Diagnosis in my area.. We have gone private for assessments and reports. The only local authority OT we saw was the Disabled Children’s Team one regarding home adaptions. CAMHS – Had to fight for this but once ‘in’ with CAMHS Intellectual Disability they were helpful. Educational Phycologist – Assessed when my Son was 2 & refuses to re-assess now he’s 6. My area regularly breaches national guidelines on everything and services are so stretched it’s a fight to get anything!”

All these families have children with an autism diagnosis, all these children require support, yet the ability to access that support varies on something as fundamental as your location.

Could you imagine if the same geographical disparity happened with other health issues? Imagine you broke your arm in a fall and had to go to hospital for treatment. Would you not expect that treatment to be almost identical throughout the country, following a proven and approved pathway of treatment and follow up? Of course waiting times may vary depending on the time of day, weather conditions, how busy the hospital is and so on but basics such as an X-ray and painkillers should be standard wherever you went.

Most broken bones mend within six to 8 weeks. Autism is a life long condition yet diagnosis, support, education and life experience all vary not necessarily due to the individual uniqueness of each person but due simply to your postcode.

One non verbal five year old may have access to speech therapy, respite, have one to one support in a fantastic school and have free access to clubs to enhance his social experiences whilst elsewhere that same child could be left to struggle in mainstream with no access to speech therapy, no support for his or her family and not even an annual paediatrician check up.

The reasons why this happens may be complex and take time to change but that does not mean we should accept it as normal.

I feel blessed that on the whole my children have the educational support they require, my son can access some respite, my daughter has received the necessary eating disorder diagnosis so that everyone understands her, and I am aware of some amazing support groups nearby.

It breaks my heart when I think that the difference between what I have experienced and what other families in the UK experience is all down to one thing: where you live.

Isn’t it high time we addressed this and stopped failing so many autistic children, young people and adults so that everyone has equal opportunities to be the best that they can be?

A letter To The Parents Of A Struggling Child

Dear parent,

I know at times you feel so helpless and alone as you watch your child struggle. When we give birth and hear our babies cry for the first time from that moment on we want to help them and make everything right for them.

We don’t want them to be ill.

We don’t want them to be unable to eat.

We don’t want them battling for breath.

We don’t want them in pain.

We don’t want them to be the last to meet milestones.

We don’t want them emotionally or physically or socially struggling.

There is something about watching your child struggle that tears your heart in two. That feeling of uselessness, helplessness, having no control over things. That feeling that you should be the one to fix it all for them, comfort them, make it all better…but you can’t. That feeling of not being able to meet your child’s needs, whether that’s feeding them, holding them, carrying them or teaching them. That feeling of having to accept help for the sake of your struggling child.

I’ve been there too.

I know that feeling of failure well. That gut wrenching feeling as a parent when a nurse, therapist, teacher or doctor is the one that gets your child’s first eye contact or enables your child to say their first word. I understand that feeling of being robbed of something that should have been your privilege, not theirs. I’ve experienced that feeling of despair, the wanting to give up, the inadequacy that comes with having a child who is struggling.

I’ve cried so many tears and I’m sure you have too.

No-one wants to be the parents of the child who isn’t talking when all their peers are. No-one wants to be the parents of the child who has failed their six week check up, two year check up and even their pre-school check up. It’s a kick in the teeth for all the hard work and investment in your child when all they see is still a struggling child.

I know the fights. The fights to prove you are a good parent and your child’s struggles are not due to neglect. The fight to get your child help. The fight to be listened to. The fight for the right educational environment for your child to thrive. The fight for basic equipment to help. The fight for support. The mental fight to get through each day.

I know the fears: for the future, for their education, because they are so vulnerable.

When you are the parent of a struggling child it means you struggle too.

Too many judge.

Too many are ignorant.

Too many refuse to understand.

Too many ignore.

Having a struggling child is lonely. It’s isolating. It’s heartbreaking.

But I also know you are doing everything you can and more. Your determination, courage and strength shines through you. No-one could love, encourage or support your child more than you do.

You’ve got this.

My child struggles too. Their struggles may not be the same ones your child faces but that doesn’t matter. We are still in this together.

Stay strong my friend. There will be better days ahead.

Your child may be struggling but that’s not your fault. Hold your head high and show the world who you are.

You are not a failure for having a struggling child.

You are not to blame.

You are a wonderful parent.

Never ever forget that,

Yours,

A fellow parent of a struggling child.

My Disabled Child Is Still A Child

Before I had children of my own I genuinely thought parents pretty much stuck together. I mean after all aren’t we all in the same situation struggling with lack of sleep, worrying for our children’s future and tidying up toys every day?

Then I had a disabled child and I discovered that somehow that changes things.

Other parents no longer talk to me about standing on Lego because they assume I won’t relate since my child can’t play with Lego.

Other parents don’t mention all the activities their child does after school and how they feel like a glorified taxi driver taking their kids to dance, swimming and karate. They know my child isn’t able to do these things so they don’t bother to share about them with me.

Other parents don’t message me for advice even if my child is older than theirs because they assume I won’t know anything about normal child development since my child is disabled.

I could go on. I’m sure you get the point though.

There is an assumption by other parents and society in general that my disabled child is somehow not really a child like other people’s. They assume my parenting is nothing like theirs.

So let me tell you something very important: disabled children are still children.

They still have toys.

They still watch TV.

They still try and get away with more time on technology than they should.

They still turn their nose up at sprouts, throw toys in frustration and demand all our time.

They also outgrow clothes and shoes quickly, lose teeth at the same time as other children, go to school and learn, hate homework and catch the cold like other kids.

Yes every single child is unique, every life is different and my child struggles to do many many things other children do naturally (like speaking for example) but that doesn’t mean I don’t want to hear about your parenting issues nor does it mean I won’t relate.

You might be surprised to know we actually have more in common than you realise.

I have a disabled child. That may mean some parts of parenting are a little different to others but at the core my son is just a child like any other and I am a parent like other parents too.

Please treat me like any other parent. Please see my disabled child as a child just like yours.

We are all in this together and we have much more in common than we both realise.

Oh and my son may not play with Lego but I can still appreciate how sore it is to stand on. You have my sympathy there.