Why I no longer grieve for my autistic son

Four and a half years ago I wrote a blog titled ‘grieving for a child I haven’t lost’. It has been read over 100 thousand times since I wrote it and appeared in a number of books and on some popular websites. It’s been one of the most commented pieces I have written and evoked very strong feelings from people, both good and bad.

Time has passed and feelings change. Some advised me to delete that blog. But why would I be ashamed of how I truly felt at the time? You can’t eradicate history and it’s not healthy to pretend something wasn’t real when it was. I stand by every word I wrote back then and I know by being so brutally honest it has helped thousands of others feel less alone and more understood. Four and a half years ago my son was non verbal, smearing, screaming for hours, unable to read or write and needed 24 hour care. He was still in nappies at 6 and a half, having seizures, his behaviour was ‘challenging’ and every single day felt never ending.

He’s now 11. He’s still not toilet trained, still smears, now officially diagnosed epileptic, still has challenging behaviour and still non verbal. He still screams, he still can’t read or write or dress himself but something fundamental HAS changed: I no longer grieve for him.

I refuse to debate wether ‘grief’ is the right word to use for what I went through. I am the one that went through it and I know the intensity and depth of my feelings and the struggles both my son experienced, and in turn I felt as his mum and full time carer. The day I sat on that park bench and poured my heart onto paper was a day of truly understanding the reality of the pain, heartbreak and despair I felt. No-one has any right to undermine that unless they were living my life. My feelings and thoughts are not up for debate and never will be.

But things have changed now. A few days ago I took my son a trip to his favourite place. He now has a means of communication and I have learnt to listen. While he still can’t communicate verbally, after a lot of frustration and heartbreak, he found his own way of sharing his world through unconventional means. For him this is a unique combination of you tube, google street map, photos and using items of reference. He shows ingenuity and creativity daily as he tries to convey what he wants to wear, eat, and do. I have had, in turn, to be wiling to put my prejudices aside, be patient, and be willing to listen with more than just my ears.

Many misunderstood my grief as not loving my son. The opposite was in fact true. It was my intense love for him that made me grieve what I was missing as a parent and also the reality of what he will miss throughout his life.

But back to our trip and why I no longer grieve for my autistic son.:

He woke up on Saturday and made his way downstairs to ‘his’ chair. He pressed his iPads on (yes he has two!) and scrolled through his history of videos in YouTube until he found the one he wanted. He then used the other to go on google street map which is set to begin at his own home. Within minutes he had taken himself to the local train station on one iPad whilst watching local trains on the other.

I know my son and I know where he likes to go. Together we have a deep understanding now that has helped us both feel happier. He learnt that communication was worthwhile and I learnt the importance of allowing him to decide and control more about his life.

So I took him on a train to his favourite shopping centre to see lifts. On the train I watched as he flapped happily and looked out the window, holding his favourite teddy up so he could see too. He held my hand to get off the train and he took me to all his favourite lifts. We had lunch together in the food court and he dragged me by the hand and pointed to what he wanted. Then when he’d had enough we came home.

I’ve accepted that this is what makes him happy. He’s accepted that I actually have a use and by communicating other ways instead of screaming (which was his communication) he can achieve more.

I struggled but he struggled more.

Love helped us through. We both needed time.

In the four and a half years of us both needing time and changing I noticed something very important: attitudes to autistics are changing. We are much more accepting of difference now and the need to accommodate. Unfortunately though that acceptance still doesn’t seem to apply to parents as they journey through all the emotions involved in caring for, and living with their autistic children.

I am no longer grieving for my autistic son because I have come to accept and acknowledge that his life will always be different, as will mine, and that is OK. But it’s important that that is seen not as a ‘changing sides’ or ‘finally being positive’ but more about a natural journey of learning, patience and love. I haven’t suddenly become ‘accepting’ it was a process of coming to terms with the fact that my entire life will mean caring for my child and his entire life will involve others caring for him.

My son didn’t scream once on Saturday nor did he self harm or even show challenging behaviour. He was happy and so was I.

It’s still difficult at times, for both of us. But instead of sitting on that bench crying we now walk hand in hand past it as he flaps and laughs and drags me back to the car. He’d rather have fun at a lift or be eating lunch than walk around a park with his mum. That’s not something I grieve about now. It’s something I smile about instead.

Six Reasons Why Autistic Children Might Struggle With Losing

Last week I was at a school party with my daughter for Halloween. She’s not a fan of parties yet wants to be there too. It’s a huge internal struggle for her as she as she wants to be there like everyone else but realises she is different too.

The free dancing, general socialising, and snacks were hard enough but worse of all was when the games began.

My daughter loves games. She loves the rules and obeys them precisely. She likes that they are organised, structured and fair. The only problem is…she has to win!

They played one game which she lost right at the very start.

In front of her peers she could not hide her upset and I had to remove her from the room to save her embarrassment.

It’s now over a week later and she still can’t get the fact she lost out of her head. She can’t process it or make sense of it.

Of course all children can find it hard to lose but for autistic children it can be so much worse.

It’s not about just telling them to be a ‘good loser’, or using logic to explain that only one child can win out of everyone there. There are very valid reasons why autistic children can find losing hard and before we can help them we need to understand them better.

1. The Spiky Profile

Autism is a complex disorder and it usually comes with what is known as a spiky profile. This means that a child’s development is at different levels in different areas that what might be expected for their age. So, for example, while my daughter is on par with her peers in maths ability she is years behind in social skills. While her peers have mastered ‘good sportsmanship’ she isn’t there yet. It doesn’t make her any less it just means she needs extra patience and understanding. All children develop at different rates but somehow society expects all children to accept losing gracefully by the time they start school. For many autistic children this just isn’t realistic.

2. The Overgeneralisation

When my daughter loses in her mind it isn’t just a game, it’s everything. Her mental health deteriorates so quickly and it escalates from ‘I didn’t win that game’ to ‘I am useless at everything’ in minutes. Nothing will persuade her out of the mindset that she didn’t win so therefore she is terrible at everything, everyone hates her, and there is nothing she is good at at all. Many autistic children can be like this. They process the game as something of major significance and losing becomes the be all and end all. All rational thought leaves and they judge themselves by the sole fact they lost at one thing. While some may think this is ‘stupid’ or ‘childish’ it is a very real anxiety and needs patience and understanding.

3. The Humiliation

One thing my daughter can not abide is being the centre of attention in a negative way. She hates people staring at her or seeing her as different. Her social anxiety makes her believe that everyone thinks of her as a loser so the humiliation of publicly losing a game just reinforces that fact in her own mind. The shame of not being the best, the embarrassment of having to ‘sit out’ and the added cheers from others who continue to play only make this worse. Despite the fact she knows it is fair she will argue that ‘it’s not fair’ because in her mind fairness equates to only her winning. Which leads to the next point…

4. The Expectation

Losing well takes practice but how can you practice something that causes so much anxiety you can’t cope? It doesn’t matter how much you try to explain to my daughter that the reality is only one child will win and statistically that is very unlikely to be her, she will then argue that is ‘should be’ and ‘could be’ her so she plays with the attitude of ‘I am going to win because I want to’. While this is admirable and makes her play well and push through her social anxiety about joining in, it all falls apart very suddenly when she doesn’t win. It’s a catch 22 situation because if she accepted she was unlikely to win she would never agree to join in in the first place! I. Her mind she has already played out the game already. That’s the only way her anxiety will allow her to play but her imagination has her winning so when the reality is different the crash is big. Expectation vessel reality is always a hard one for everyone.

5. The Inability To See Things From Others Viewpoint

My daughter isn’t selfish. She is actually one of the most empathetic children there is but when it comes to games her anxiety becomes so high she goes into self preservation mode. In that mode she can’t look at someone else’s point of view so forcing her to congratulate the winner won’t work. She feels cheated and angry at the winner so how can she say ‘well done’ to them? Her own feelings and upset become so huge they are overpowering preventing her from having empathy for anyone else at that precise moment.

6. The Lack Of Control

One of the hardest things about any sort of game, wether it’s snakes and ladders or musical bumps, for an autistic child can be the absolute lack of control they have over any of it. The randomness of what you may thrown on a dice, or having an itchy nose when you should be frozen in musical statues is uncontrollable and that can bring huge anxiety to many children. They can’t predict and they are out of their comfort zone which can cause upset, frustration and challenging behaviour.

You would think with all that my daughter would hate games. In fact the irony is she loves them! Yet no matter how many different games we play she still finds it deeply distressing to lose.

The important thing is I recognise that and I understand and we continue to work on good sportsmanship often.

Like everything it’s about patience, understanding and compassion.

So the next time you see a child crying because they lost at pass the parcel or getting angry because they were ‘out’ at musical chairs spare a thought for the difficulties they are dealing with and remember we can all struggle to lose…especially when it comes to football!

Raising Two Autistic Children and How It Has Affected My Weight

I have never been super model material and that hasn’t ever bothered me. Prior to having children I was a size 12 and my weight wasn’t anything I ever thought about.

I am not prepared to say what size clothes I wear now because I know I am over weight and now I think about it a lot!

At nine months pregnant with twins I weighted much less than I do now, ten years later. The years have not been kind to me that way sadly.

As a new mother my weight was the last thing on my mind. It went even lower on the list when I told the health visitor I had some concerns about my son’s development. At 20 months I took him to see a paediatrician.

That day the paediatrician first mentioned autism and I went home and ate chocolate…because we all know that HAS to make everything better don’t we?

I had secretly hoped my sons struggles with speech, his delay in reaching milestones, his need for routine, his lack of social skills and his continuing rocking was a ‘phase’ he would grow out of. I was struggling with him outside of the house(and inside too where he would scream for hours on end) so I slowly but surely stopped going to anything with him. No toddler groups to be embarrassed at with my screaming child, no rhyme time at the library to watch other kids his age singing when mine could not say a word, and certainly no church when he would never settle in crèche.

The isolation started to affect my weight.

If you are not going out and meeting people what does it matter what you look like? I coped with the isolation by making poor food and drink choices.

Neither of my children were great sleepers. My daughter would only sleep if nursed from the breast and my son could stay awake all night at 18 months and still have more energy that a Duracell battery!

The lack of sleep started to affect my weight.

When you are tired your whole body is lethargic. You haven’t got the energy to cook and wash up so calling a delivery from a take away felt so much easier. It seemed like one less stress to think about in the chaos of life with young twins who consumed me all day and night. Sleep deprivation also meant that if I did manage a supermarket shop I would always forget essentials out of exhaustion. It took less energy to open a can of fizzy juice to drink than to remember how to even make a cup of tea. I was that tired!

Then as the children started nursery speech and language therapists, early years workers and educational phycologists became involved. The thought of people coming into our lives and our home brought so much stress and anxiety that I would cry into my cup of tea while munching on a chocolate biscuit.

Stress started to affect my weight.

The stress of finding a nursery place able to meet the needs of a non verbal child in nappies at three who wasn’t yet walking. The stress of putting the children in transport when neither of them could say if they were being treated well. The stress of feeling like I was always being judged because my children were not like others would make me want to reach for cake and fizzy juice while the children were at nursery or school.

Outside of nursery or school I had no other child care. My son was still screaming at 6 and beyond and the children’s insistence on rigid routines meant I could never ever be away from them. Going to the bathroom caused my daughter to have a panic attack and my son to scream! Everyday was a repeat of the previous one and outside of school we never left the house. I felt I was letting my children down.

Guilt started to affect my weight.

I felt I must be to blame for my children’s struggles since I was their main carer. I would read about autism being genetic and cry myself to sleep. I would read about early intervention and courses and wonder if I was doing something wrong since my child was 7, then 8, now 9 and still not talking at all. I felt guilty asking the NHS for nappies for my child as if I was somehow stealing from them. I felt guilt I was unable to work and pay taxes. I felt guilt at not noticing the autism in my daughter until she too was diagnosed a week before her 5th birthday!

I coped with that guilt with more take always, hot chocolate and crisps.

Food became my comfort when my world was falling apart.

I lost my self esteem, self worth and pride.

It’s taken me years to accept my children’s autism. I have walked through the isolation, the lack of sleep, the stress and the guilt and though things are not without difficulties, I am in a much better place.

Then one day I realised: if I could accept my children’s autism then it was time to wake up and accept how overweight I really was and do something about it.

Now I am slowly trying to lose weight. It isn’t easy though as my children are just as autistic as they always have been. They still only accept me doing certain things, rely on rigid routines, require a very high level of personal care and still struggle with sleeping a lot. I still don’t have child care and we have an abundance of appointments.

But I am making better choices. I am exercising when I can and not ordering take always like I used to. Change isn’t something my children like and it was so easy to settle into our unhealthy rut and stay there.

But for the sake of my autistic children and for my own health I am now slowly taking control of my weight.

I don’t blame my children for my weight issue nor do I blame autism. It was MY reaction and MY choices combined with the social isolation, lack of sleep, stress and guilt that having autistic children brought that pushed me to seeking support in all the wrong places.

I know it’s not going to be easy but one thing having autistic children has taught me is that even when progress is slow it is so worthwhile.

Why I No Longer Tell People My Children Have Autism (even though they do)

I always thought I was a proud ‘autism mum’, unashamed of my children and spreading autism awareness wherever we went. It turns out I have actually been harming my children, and the autism community, without even realising it.

Let me explain.

It’s the school summer holidays and both my children are autistic. One of my children has severe autism. He has also recently been diagnosed with epilepsy. At 9 he has no spoken language so he often screams. He chews his cuddly toys, flaps, spins, claps and makes repetitive noises. His twin sister has anxiety, is selective mute, freezes if someone talks to her or even looks at her and is very much in her own imaginary world.

Yesterday I took them out ten pin bowling followed by a trip to a well known fast food restaurant.

When we arrived at bowling, despite pre-booking the lane online to save waiting, there was still a queue. My daughter panicked and became anxious and distressed, asking a million questions over and over again

‘What if it’s too busy mum and we can’t play?’

‘What if all the lanes are broken and we need to go home?’

‘What if there are no staff because they are all sick?’

‘What number lane did you book because I can see people on lanes and they might be on our one…’

And so on.

Meanwhile her brother was wandering, flapping, chewing the nose of his teddy and otherwise just acting happy and excited in line with his developmental age of around 18 months or younger.

This time last year I would have not stopped talking. In fact I would have been similar to my daughter who was saying so much out of sheer anxiety. Except my anxiety was different as I was much more socially aware and I felt I had to ‘explain’ my children’s unusual behaviours. I would have turned to the strangers behind me and said something about how both children have autism and find waiting difficult and my son can’t speak. Even if they were not even looking at the children or even bothered by them in any way I still told them anyway! I then would have made a big deal of announcing to the person at the counter how the children had autism and global delay and my son could not speak and this and that and…well more than she or anyone else actually needed to know!

I truly thought I was helping. I thought I was explaining behaviours and educating strangers. I believed I was spreading ‘autism awareness’.

Actually what I was doing was embarrassing my children, portraying autism as something that needed excusing or apologising for and exposing my vulnerable children to the world. Would I have felt the need to broadcast my children’s difficulties if they had been wheelchair users? Would I have shouted it to the world if they had a hidden genetic condition or a medical condition like diabetes? Yes my children were noticeably different but by mentioning that fact I was actually drawing MORE attention to it and not less. My anxiety was making things worse.

This year things are different. Naomi is asking question after question, Isaac is flapping, wandering away and chewing his teddies. They are openly different.

But now I keep quiet.

Now I no longer tell strangers my children have autism even though they do.

I am not ashamed of my children, neither am I embarrassed. Never. Not even for a second. In fact I accept them totally and wholeheartedly for who they are. That is why I stay quiet.

My children deserve respect and privacy. Society should accept them without any justification.They should not be accepted because ‘they have autism’ but because they are wonderful, beautiful and unique just like everyone else in life.

So yesterday we were issued a lane (number 19 if you really need to know) and I supported my precious children to take turns, use a support frame to push balls down the lane, and to watch excitedly as pins fell down (much more often when they rolled than when I did!). No-one stared, no-one asked questions or even really cared about us much and I never once told anyone my children have autism.

When we had had our ten games I helped them into the car and I drove to the nearby well known restaurant. I ordered nuggets and one ate just the skins and drank only milk while the other licked the table as well as his food! Still I never once mentioned autism to anyone. Both children clapped, flapped and made baby noises. I still never mentioned autism.

My children haven’t changed. I have.

Last night I apologised to both my children. I can’t say how much either of them understand how my own anxiety caused me to feel I had to tell the world about their diagnosis when in fact it was no-one else’s business. If THEY wish to tell someone about their own autism (I understand my son is likely to never reach this stage due to lack of spoken language and severe learning difficulties but he still deserves the same respect and I treat him as if he does understand anyway) one day that is THEIR choice. If my daughter (or son) wanted to wear clothing stating they had autism again that would be their choice.

But until then I have no right to disclose their diagnosis to complete strangers just because I feel the need to justify and explain their behaviours. Everyone is different and we should all just accept that without explanation or labels.

I am learning. I am not anxious anymore. So I no longer tell people my children have autism even though it is obvious they do.

It is making for a much more relaxed life for everyone.

P.s. They both beat me at bowling…I wonder how I would feel if they told everyone I was rubbish at bowling…

Hope For Parents Who Can Not Leave The House With Their Own Children

My children returned to school this week after two weeks Spring break and as I look back at photographs of their time off I realised something very significant: I am now able to take my own children out of the house!

That may seem a strange thing to say to anyone who has never been where I (and thousands of other parents) have been, but I can assure you every school holiday there are parents of autistic children right around the world stuck at home unable to leave the house with their own children.

Back in July 2016 I wrote this post where I quoted families throughout Britain who were trapped at home unable to take their own children out. It wasn’t lazy parenting or just anxious mums or dads, there were very legitimate reasons why taking their autistic child (and siblings) out the safety of their own home was a huge challenge. To summarise the list of reasons included refusal to leave by the child, no awareness of danger, violence and unpredictable behaviour, sensory issues and public comments.

I was one of those parents.

I have two autistic children, one with huge anxiety and another with challenging behaviour and huge sensory needs. For my safety (and theirs) it was best we stayed inside our own bubble of safety at home.

So what changed? Less than two years later and I have photographs of my children at soft play, in shops, swimming and in the park during school holidays. I not only took them both out myself but we all had fun and I even managed to snap some pictures! What others take for granted since birth has taken me almost ten years to achieve…but I got there, and you can too.

So how did I get to where we are now?

1. I worked out my children’s sensory needs and played to them.

I watched them at home and took notes. It was very obvious both my children loved water. They would play happily with water and bubbles and they both loved a bath. That got me thinking about swimming. I called the pool to see when they were quiet and while they were at school I went myself and took pictures of the changing rooms, lockers and showers (I knew they would never use these but they still had to walk past them). We watched YouTube videos of children swimming and I let them try on arm bands and rubber rings.

Then one day I took them swimming. The changing and drying was, and still is, a bit challenging but they love being in the water. It was worth it. Finally we had one place I could take them!

2. I took account of their need for routine and worked around this.

My children do not cope with routine changes. However that meant I could not leave the house with them so something needed to change. I knew there were some parts to the day that were unmovable like bath time and meal times. We never go out after dinner as I know how anxious and distressed my son gets if he does not have a bath at 6pm. He is more amicable and open to change after breakfast so this is when I usually head out now. It’s what works for us and that’s fine.

3. I do the activity and then bring them back home.

First bowling then home. First library then home. They needed to learn to trust me and they needed to know they would always be brought back to their safe place. There was no sneaking into the supermarket while I had them out or popping into a friend’s house on the way home. Short trips keep their anxiety (and mine) much lower and gives them time to process where we have been and wind down from that. One thing at a time is a motto that works very well for us all.

4.iPads come too.

For my twins, and many other autistic children, technology is much more than just a solitary chill out activity. My non verbal son uses photographs on his iPad to communicate and they both use their tablets to zone out when things get too much. If that means they play a game on their tablet and stay sitting on a seat while the other child takes a turn at bowling then I am delighted. Having their iPad helps the transition, minimises the sensory overload and brings them comfort. If that’s what it takes to get out the house then so be it.

5. I involve the children and instantly reward them.

Good old fashioned bribery got us out the house! I remember taking my screaming son one day to the supermarket. He was anxious and annoyed I was taking him out the house but I knew the benefits to him would out-way his anxiety. He was safe and with me and I was monitoring his stress levels continually. I took him in for bananas and right back out again. On the drive home he ate a banana while flapping with excitement. Now he associates the supermarket with food (instant gratification) and I can take him in with me for short periods provided he gets something to eat in the car coming home. There is no wandering aisles stressing him and I take him at times the shop is quieter to minimise waiting. It works. There is one supermarket near me that he never ever wants food though and that’s because they have another massive motivator for him: a lift! He knows if he stays with me while I pick up milk he can watch the lift for a minute before home. It’s mutual benefits really. With my daughter a promise of a magazine or other small treat had the same effect.

They both now see so much benefit to leaving the house that on occasions they even suggest going places before I do!

It took time and patience. I needed to take a risk and do it. It involved planning, risk assessment and sometimes having another adult with me, but we got there.

Like so many thousands of parents of autistic children I found myself staying home all day everyday because my children refused to leave the house, their lack of danger awareness scared me, their sensory issues were so high and I was worried about what people would say.

My children still have no awareness of danger. They still (and always will) have autism. They still have high sensory needs and I still get comments and stares from the public.

The difference is now we just go out and have fun anyway!

It wasn’t easy. It took time and patience. Today I can leave the house with both my autistic children on my own. I am proud of myself but I am ever prouder of both of them.

If you don’t feel you can leave the house with your autistic child can I tell you just one thing: There is hope.

It is most definitely worth it. You need out and the world needs to see both you and your amazing autistic children.

Why I will no longer attend anything at my autistic son’s school

I don’t want to be one of those parents that never turns up for anything at their child’s school, but next year I can assure you that I will be that very parent. I won’t be at any parent engagement events, or school shows and I will be avoiding assemblies like the plague! I won’t even be at parents night and my child won’t even see me at the annual achievement assembly either.

I am not a bad parent though, far from it.

This is NOT what I want but I have come to the conclusion it really is for the best.

In fact making this decision has broken my heart.

Yet my New Years resolution to not attend anything at my son’s school is one New Years resolution I fully intend to keep.

Why? Well because it is what my son wants.

I never thought my child would want to be the only child in the school nativity without his mum or dad sitting proudly watching. I never thought my son would want to collect his annual achievement award with no-one to cheer him on. The thing is though; I am not autistic, he is.

He sees the world very differently to me and this is a great example of that. I see his school as somewhere I want to be highly involved with and engaged with. I want the emotional feeling of seeing my only son being on stage and taking part in things I never thought he would be capable of. I want photographs and memories to treasure of him dressed in costumes and joining in. I am really wanting it all for me. Isaac though sees things very plainly: mum belongs at home not school. End of.

Seeing me at school, for whatever reason, causing him far too much distress. That distress, confusion and even anger, has now built to a point where it is no longer safe for me, or for staff, to have me at school events. Isaac gets so upset at seeing me and so anxious he can harm himself and others. That distress lasts a long time as he just can not process the fact I have appeared somewhere that, in his mind, I should never be. When he comes home from school his anxiety is set off again as he sees me back home and he must wonder how I was at his school 14 miles from home just a few hours before. He doesn’t have the cognitive or processing ability to understand fully that I could drive there and back (after all he never drives so how could I?) and the whole evening becomes challenging for the whole family. Things get thrown, broken, we get screamed at and he is in obvious distress. We can not ‘talk it through’ since at 9 he has no speech at all. It is awful and heart breaking for everyone.

So I have had to lay aside my own desire to see my child at school. I have had to take the very difficult decision to never see another nativity play he is in, or visit him in his classroom. It is even harder when I know he is actually excited to see other parents do these things…just not his own mum.

I could disguise myself and sit at the back of the hall I guess but what if he did somehow see me? Is it worth the upset it causes him?

I will continue to support his school by sending items in, communicating via his home school diary and giving money as required. I want much more, of course, but I hope they understand that this is the best way now. I pray they take photos that I will never be able to take and maybe even record events on video if possible. It won’t be the same as being there for me but what can I do?

I miss out on seeing my son do so much already. I miss out on hearing his voice, or teaching him to ride a bike, or even playing a simple game with him. I just never thought I would miss out on seeing him at school too.

New year, new term, and a new way of putting my son’s needs before my own.

This is the right thing for my son, for his sister and for the whole family. I have tried for five years but that’s it over now. From now on I will no longer attend anything at my son’s school and for us this is hopefully going to help make the next year more manageable and pleasant for us all.

Sometimes though I just wish autism was a little less hard on my heart.

Why Has Society Got Such An Issue With Parents Being Carers To Their Own Children? 


‘What do you do for a living?’ 

‘I am a carer.’

‘Oh wow. Where do you work?’

‘From home. I care for my disabled son.’

‘Oh, you mean, you are a stay at home mum?’

——

What is the problem with people understanding the fact that I can be a mum and a carer for my own son?

 
Even within the community I am part of (families with one or more children with a disability) some still don’t understand. They see what I do as what every mum would do and to an extent they are right.
The issue is my son’s needs are so great at present that I am unable to work. He has complex needs and is therefore entitled to a benefit for disabled people. Part of that means someone is able to claim a separate benefit to care for him. Why can’t that be me since it is me who is doing that job?
If I were to devote the same hours to caring for my elderly mum, or for my next door neighbour or even a friend I would be seen as noble and brave and most people would be urging me to claim the carers benefit to cover my expenses of taking them to hospital or making them meals or even as token payment for my hours of care. The issue only seem to be when I mention that the person I care for is in fact my own child.
You see people are able to see that caring for someone else necessitates a clear distinction of roles. There is an expectation of a carer to put so many hours in, put the other persons needs first, make sure the person cared for is getting the best services possible and facilitating them to attend places they need to go to. When you give birth to a child there is an assumption that a parent will do all of that for a child regardless.
But there is also an assumption that at some point the child will became more and more independent and the caring side of parenting (the formal looking after side rather than the emotional caring which lasts a lifetime) will gradually fade.

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There was a time in my son’s life when I realised that for him this was never going to be the case. It was not a day or even a week but a gradual realisation that the child I gave birth to was not meeting milestones and was never going to live independently in any way. At 9 he can not speak. He has no concept of using the bathroom on his own. He can not open a packet of crisps nor use a knife and fork. He can not dress himself.
His care needs are 24 hours a day 7 days a week. He started receiving his disability benefits at just two years old. I never started claiming anything as his carer until many years later. When he was still of pre school age, even though he never walked  until after 3 and he was uncommunicative with very limited understanding, I still viewed myself as his parent much more than any sort of carer.
When he began school I looked at returning to work either part time or full time. That was the beginning of me realising I was not in any way a traditional parent. The school would call regularly just as his nursery had done previously. His medical appointments totted up quicker than I could keep up. His diagnoses accumulated continually. His development, on the other hand, stalled. Sleep was just a few hours a night while screaming could last much of the day. I sat in so many hospital waiting rooms dreading what doctors would tell me next.
I googled what a carer was:

A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support. (Www.carers.org) 
I googled what a parent or parenting was:

Parenting or child rearing is the process of promoting and supporting the physical, emotional, social, and intellectual development of a child from infancy to adulthood. (Wikipedia) 
I thought about my child. If parenting is supporting his development from infancy to adulthood I was definitely a parent. But I looked at the roles of carer and realised my child has a life long disability. He wasn’t going to get better and at no point in the foreseeable future would he cope without my support.
I could not get a job because my commitment to him was too high. He could not access after school care and neither could a child minder look after him. Family members could not look after him either as his physical care needs were too high. I finally realised I was his full time carer as well as being his mum. 
I understand that my role is complex. I understand that many would say ‘well surely any mum of a disabled child would do that?’. I see you metaphorically scratching your head trying to figure out if it is right that a mother can be paid to care for her own son.
While you think about it I am wiping dinner from my son’s face. I am holding his hand while he walks, I am lifting him into his car seat and strapping him in. I am watching him through the night as he is wide awake yet again. I am bathing him and changing his continence products.
I can’t wait for society to decide if I am caring: I am far too busy being my son’s carer. 
There is no-one else stepping in to the role after all.
Whether society wants to accept it or not thousands of parents in Britain today are caring for their own children as well as parenting them. 

I am just one of them. 

 

A version of these his article first appeared on Firefly here