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.

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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


I Don’t Want To Be An Autism Parent Anymore


The day started far too early. There was no sweet cuddles in bed or a little voice asking for a drink; no I was woken as usual by screaming. I have had day after day, month after month, year after year of being woken by screaming and I don’t want that anymore. 

I don’t want to wake up to a smell that would make you want to vomit and bedding that is fit for the bin more than the washing machine, because yet again it is covered in something that ought not to be seen by anyone else. I am so tired of that now. 

I don’t want to sit on my couch in the middle of the night looking at my child and wondering what I did to have a child who sees no point in sleeping, who at 8 still can’t say ‘mama’ and who still thinks the world revolves around his needs only. 

I love him more than words could ever convey but I don’t want to be an autism mum anymore. 

I want to be a mum who has fun with her child rather than doing therapy with them. 

I want to walk my son to school and talk to his friends instead of sending him in a taxi to a place where I am a stranger to them. 

I want to be able to talk to my child about the fact it is his birthday soon and discuss what he would like to do to mark that day. 

I want to be someone who takes my child to bowling, teaches them to ride a bike or even goes to the movies with them. Instead the only place I ever take him to is hospitals or respite. 

I am tired of missing out on everything. I am tired of never having party invites, knowing nothing about his day at school, having to still dress him, having to take adult nappies and wipes with me wherever I go. 

I don’t want to be an autism parent anymore.  

I am tired of holding my child as he screams in public again. 

I am tired of the never ending judgement, the stares and the horrid comments.

I am am tired of carrying around my broken heart as a result of the interventions and therapies having achieved nothing. 

I simply can not bear the thought of my child as an adult knowing what society is like. 

I am tired of meetings. 

I am tired of phone calls from his school. 

I am tired of fighting for everything but then being accused as having an attitude or people thinking I act like I am entitled. 

I don’t want my child to have autism anymore. This is not a ‘different way of seeing the world’ that he has, or ‘a wonderful gift’. This is a child about to be 9 years old who can not say ‘mum’ or use a bathroom himself. This is a child almost my height who still can’t put his own clothes on, brush his own teeth or dry himself after a bath. This is a child who can never ever be left alone, who has to have everything the same all the time, who self harms and wanders. This is a child still with the mind of a toddler who will require others to look after him his entire life. 

Who would want that for their child? 

Who would want that as a parent? 

Today I don’t want to be an autism parent any more. 

The problem is I have no choice. 

So I strip that bed, bath that child, cook him that breakfast as I always do and let him sit on my knee while he rewinds the same ten seconds of video on you tube he did yesterday and the day before that and the day before that. 

Nothing changes much in my house, except my feelings. 

Today I am tired. I don’t want to be an autism parent today the same way any other parent may feel about not wanting to be the mum of a toddler who tantrums daily or a baby who has reflux or the partner to someone with Alzheimer’s. We all have days when we are just down about the life we have. 

Yet we carry on. We dust ourselves down, search for some positives or listen to some music. 

Tomorrow is a new day. It will probably start off with screaming again too., but maybe tomorrow I will be stronger, more hopeful, more upbeat. 

Maybe tomorrow I will want to be the autism parent I need to be. 

Maybe tomorrow. 

The Life Of An Autism Sibling


In the back hall of a church she watched as her brother climbed a toddler slide. As he sat at the top of the slide flapping he lost his balance and fell off. He was shocked and shaken as he laid there confused and hurt.

While the adults checked him over his sister ran around the room looking for all his favourite teddies, then sat beside him stroking his hair and whispered: You are ok. Don’t be sad. You are ok.
She is smaller than her brother, weaker than him physically, and much more timid in nature.
Yet she is strong. 

She is the sister of a child with autism and that is something very special. 
She copes with screaming and has learnt to be a peace keeper.

She copes with a brother who is controlling and she has learnt to compromise.

She copes with a sibling who rarely sleeps and she has learnt to rest as and when she can.

She copes with the unfairness when her sibling does not understand rules and she has learnt patience and maturity beyond her years.

She copes with aggression and responds with peace.

She copes with his iPad on full volume and responds by showing him how to plug in earphones.

She copes with people staring at him and she smiles at them and puts her arm around her brother in support.


She copes with getting less attention than she deserves and has learnt to play herself to cope.

She instinctively knows and understands now when he is experiencing sensory overload and leads him to a quieter place.

She opens snacks for him because she knows he does not have the co-ordination to do it himself.

She has learnt that he can not join in her games and copes with that disappointment better than many adults would.

She fights her brothers corner.
She keeps him safe.

She changes the TV channel when he screams at a show he does not like.

She even makes hand dryers work for him because she knows how much he likes them.

The life of an autism sibling is not easy. They are often over looked and expected to cope. They miss out on so much because of the needs of their sibling and have to adjust to family life dominated by an invisible condition. A lot is expected of them beyond what other kids deal with.

It takes strength to cope when your brother screams daily. It takes strength to understand certain toys can not be bought because they pose a danger to your sibling. It takes strength and maturity to realise and accept that having friends around to play may be more difficult than it is for others.

To watch your brother or sister struggle with something you do easily and not boast about this, to stand up for your sibling when others mock them, to cope with public meltdowns and not be embarrassed: you are amazing! 
Let’s hear it for the autism siblings! You all deserve the lime light for once!

Professional Speak Translated For The New Autism Parent 


Picture this: you have some concerns about your child’s development. Perhaps he or she is not speaking much, not giving eye contact, ignoring or over familiar with others or has some behaviours that seem a little repetitive. You decide to seek some professional advice. 

You have now entered the world of ‘professional speak’ where all sorts of professionals will say thing to you that actually have a meaning you may never realise. 
For those just starting out on the autism journey here are some things you may hear a therapist or a doctor say about your child with autism and here is what they might really mean. 

  •  “Let’s see how he goes shall we.” 

What that really means is we reckon you are exaggerating a few things and all will be fine. 

Remember: if your child has autism they will not grow out of it so don’t let this put you off!

  • Shall we discuss this another day?”

Which really means they are hoping to avoid the issue and hope you don’t notice.

Remember: take notes and remind them at your next visit you have something that needs discussing!

  • He/she is very complex.”

Which means that they really are not sure what to do with your child and hoping someone else will take over. 

Remember: if a doctor or therapist says this make sure they are working alongside everyone else dealing with your child so that this is not used as a cop-out. 

  • I’ll see you back in clinic in six months time.”

That translates to they have ticked the box to say they have seen you and they hope whatever the issues were that they will have disappeared by time you get seen again.

Remember: make a note somewhere on when you were seen and start chasing the next appointment in a few months time. Write down your concerns and make sure you are being heard.

  •  “What do you want us to do for you?”

This means they are trying to manage and limit your expectations from day 1 and they are also checking IF they can actually help at all. 

Remember: not every service is right for your child but if you feel a service CAN help push them to do so. Sadly they are often under pressure not to take every case on that is referred. 

  • The next step is for you to attend this course before I can do anything else.

Invariably that will be some sort of parenting course. Sadly it is still endemic to blame the parents before any real issues with the child are even looked at. 

Remember: it is not mandatory to attend any parenting course but often doing them can help and it also shows professionals you are engaging with them. As annoying and insulting as they are at least you can prove you are not to blame. 

  • I was speaking to my colleague about this.”

What this means is they feel they are out of their depth and may be looking to blame a colleague for some new idea or treatment rather than taking responsibility themselves.

Remember: this is YOUR child and if you feel uncomfortable with any professional talking to anyone, be that colleagues or other agencies, then make sure they know! Data protection means you have a right to privacy and confidentiality at all times. 

  • “I was planning to do such and such a test and speak to so and so in due course and get back to you at a later date.”

What this really means is they are delaying diagnosis in the hope at least one other person will state they have not seen signs in your child.

Remember: While basic tests like eye tests and hearing tests are useful and gathering information is wisdom, you can not be left indefinitely in limbo land for too long. It is important if your child does have autism that they get diagnosed and helped as soon as possible. Insist on calling back in a months time to ensure you are not being forgotten. 

  • Have you tried….(fill in the blanks with anything from hypnotherapy, hydrotherapy, ABA, a certain support group in the area, melatonin for sleep and so on)?”

This really means they are hoping you will say ‘ah yes we did this and such a thing is now no longer an issue’ so that they can discharge you. 

Remember: just because something works for others does not mean it will work for your child too. There is no harm is trying a change of diet (providing not harmful) or different forms of therapy, but there is no one size fits all in life and your child may need something totally different. 

  • That’s just all part of autism.”

Ridiculously some professionals seem to think once your child has autism that every other niggle or health concern they have is therefore related even if that is a rash, a headache or as crazy as tooth ache!

Remember: while autism is a complex neurological and developmental condition your child still has a right to treatment for bowel issues, pain and any other medical issues. Do not be fobbed off with the autism card! 

  • You look like you could do with some respite!


This translates as you could really do with brushing your hair and the matchsticks holding your eyes open are rather obvious today.

Remember: if they truly think this make sure they do something about it! Insist they pass that comment on to the right people or explain the process of getting respite!
Finally I will end with this one because of all the comments professionals give me this one angers me the most: ‘

  • We find working with the teachers is a better use of our time that working directly with your child.

Really? What that means is they place way more value on a teacher (who does not have autism) than they do on your child who desperately needs help! 

Remember: while few of us actually enjoy challenging professionals we have to fight for our children. Do not allow system failures to fail your child. 
Whatever therapists and doctors tell you always remember you are the parent. You were the one to raise concerns and you are the one who knows your child best. Make sure everyone is working with you and for you. 
Also note you will sometimes hear those wonderful words we all love so much: ‘

  • “I believe you!”

I hope more of us hear that one than the others! 

The reason I don’t like to eat

My beautiful blue eyed girl has recently been diagnosed with an eating disorder. Three years ago she was diagnosed with autism. Last week I sat with her and we talked. This is all her own words. She asked me to share so others understand.

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Sometimes bedtime is the best time. It is the one time people leave me alone. They stop asking things like ‘are you hungry Naomi?’, ‘would you like a drink Naomi?‘, ”are you sure you don’t want a snack?’
Why do people eat and drink so much anyway? I have things I much prefer doing like watching you tube and playing my own games with my toys.
How am I meant to eat or drink when I am doing something else?
Sometimes people even want me to change rooms to eat.
School do that.
Why?
I am comfortable and happy and then you make me move and my brain is thinking about where am I going, did I leave anything I might need, what if things have changed when I get back? What is someone touches anything?
Those things scare me.
You want me to move to somewhere, sit down and eat what you have made.
But I didn’t ask for it. I did not know it was happening. No-one told me I would smell different things, hear different voices and touch different stuff and now you want me to even taste things?
It is too much so I just freeze.
I can hear you but everything is fuzzy.
I am so scared. I am scared that people are looking at me. I am scared everyone is going to talk to me. I feel sick.

Why do people eat funny things? People eat things with bright colours and I can’t understand that. My body is a pinky beige colour. That is a safe colour. Like a light brown sort of colour. If my skin is ok then things that colour are ok too.

You want to know why I still sometimes don’t eat things that are my skin colour? Well it is just wrong. And my brain is all upset about food. When I play with my toys they look the same, they stay the same and they act the same. Sometimes I eat something and it tastes nice, it is the right colour and it fells nice and soft in my mouth. But then some days I eat what you tell me is the same and it isn’t the same. It is not the way I saw it the time I liked it. It does not have the same softness and I get upset. You ruined it. Why do people do that? I order my toys in lines so when I look at them they look the same. I feel safe like that. But you don’t let me do that with food. If I put it in order it makes sense. I want to know it is ‘right’ and I need to check it. What if it is wrong and it goes inside me? That would hurt me.

That is why I have to have one thing then another. My brain tells me ‘this is nugget skins’ and I remember what they taste like. You damage it if it has sauce or potatoes on. Then it is not nugget skins but some weird thing my brain does not know. So all nuggets are dangerous. And I get scared again.

I like soft. When I chew sometimes I get a little tiny bit to swallow and sometime a bigger bit. That means it tastes different and it does not make sense. Nibbling is safer. My teeth don’t want to touch stuff because then it tastes of teeth not what it should taste like. Teeth is not a nice flavour. You know that because no one makes anything teeth flavour do they?

I feel sick sometimes. Mummy says it is hunger but I don’t get it. My tummy makes me feel sick and people say it needs food when it already wants to get rid of what is in there so why add more? That does not make sense to me.

I don’t think people like me sometimes. They shout at me and keep making me eat. I get scared and sad, Please leave me alone. I like it best when mummy puts things I like near me when I am playing so my toys can look at it and tell me it is ok. I know my world is ok then.

All day long people eat eat eat. And I get scared scared and more scared. I eat at breakfast and then you want me to eat again for lunch or snack at school, then dinner, then supper.

I want it to end some days. That’s why bedtime is the best for me.

Mummy asked me if I dream about food when I sleep. No way! I dream about trains. Thomas tank engine is brilliant. He never eats and I like that!

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This article first appeared here