Dear Special Needs Parent…Please find time to cry

Dear special needs parent,

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

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

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

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

Please find time to cry.

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

Don’t let the parent guilt consume you.

Don’t ever feel you are alone.

Please find time to cry.

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

It’s ok to want privacy.

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

Please find time to cry.

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

It’s not a weakness to cry.

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

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

So find time to cry.

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

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

It doesn’t mean you are any less.

It doesn’t mean you are not coping.

It means you are human.

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

I promise you you will feel better for it.

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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


The day one of my neighbours became an angel to my seven year old.

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I wish I had the faith of my seven year old. When she prays incredible things happen time and time again.

My daughter is so special but so fragile. God has his hand on her in a very special way. Naomi has autism. She has huge anxiety and her twin brother has a genetic condition with complex needs as well as autism. To help ease her anxieties she carries little toys with her wherever she goes, including going to school.

A week ago today her twin brother was due to go to hospital to have an ambulatory EEG machine fitted to monitor his seizure activity. Naomi was more anxious than usual that day and clung to her toys in her pocket as she walked to school.

I left her at school and headed up to hospital with her brother Isaac. It was traumatic for him and for us and we headed home with him all wired up. Naomi was collected from school by her gran as we were not going to be home in time.image

I came home to her in tears. One of her precious toys has been lost. She was distraught and I felt so helpless. I could not just go to a shop and replace it as her brother could not be left unattended and she knew this. Nothing could make things better and she cried in my arms. My heart was broken for her.

As she dried her tears and her breathing settled she quietly looked up at me and whispered

“It’s ok mummy. I have prayed. God will bring me back my toy.”

My thoughts turned to how I could make this happen. I did not want her heart to be disappointed but more importantly I did not want her faith to be shaken. I am her mum, but I can not be God. I looked into her beautiful blue eyes and saw her heart of faith.

“Naomi, you are right. I believe with you.”

And that was that. She had prayed.

As I continued to watch her brother closely we started homework with a total peace. She lined up her toys leaving an obvious gap where her missing one belonged. I knew she would not sleep tonight with that gap there but she just assured me God would bring her toy back.

She did her spelling and her reading with her heart of peace intact. She smiled, she laughed and she carried on as normal.

Then the door bell went.

Mummy, that is the Angel God has sent with my toy.”

Have you ever seen an angel? Do you think they have a halo, wings and dressed in white? My daughter knows differently. There on my doorstep stood a neighbour I only knew by sight.

“Hi, this may sound strange. On my way to work this morning I found a plastic toy on the ground. I picked it up and wondered if it belonged to your daughter. I don’t know you but I put it in my pocket and took it to work with me. I am on my way home now and just thought I would knock your door and ask if it belonged to you.image

My daughter danced with excitement. I cried.

I don’t know what my son faces but I know God is with us.
I don’t know how my daughter will cope with a future with autism, anxiety and living with a twin with complex needs but what I do know is that God has his hand upon her in a very special way.

God cares about a plastic toy for a seven year old and God cares about you.

I will never forget the day one of my neighbours became an angel to my seven year old.

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Conversations with a six year old about disability

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We were sitting waiting in the car; unassuming, ordinary, an almost everyday occurrence. But the conversation was anything but. I have replayed it in my head a few times now because the insight, compassion and sheer innocence of it all was something very special.

Children see the world so differently. And there is so much we can learn from a six-year-old.

Mummy, we are parked in a wheelchair space” she piped up, so matter of factly.
I know honey, it is ok. Isaac is with us (her twin brother who has a number of disabilities) and I have put the blue badge up.”
“But you have not got his wheelchair?”

That is ok too sweetie as not everyone who is disabled uses a wheelchair. Isaac is disabled but he does not use his wheelchair sometimes. The picture is just used to tell other people the space is for disabled people.”
Well that is a bit silly! I don’t like that sign mummy because it is not right. Why have it for cars? They are not disabled. And it is not right on the toilets too! Wheelchairs don’t use toilets, people do!”image
“I know. But they use it as a sign to mean disabled because wheelchairs are something lots of disabled people use. And on the toilets it is just like the sign for woman and men and changing babies too
“Well the baby change one is wrong too! My brother is not a baby and you take him into the baby change too sometimes. Do shops not think that sometimes big children still need changed and they are not babies? That makes me sad because my brother is not a baby.”
I agree. Sometimes it makes me sad too darling. But it is just a sign and nobody means it to upset people.”

There was a pause while I sorted out her brother who was upset and in doing so I knocked over his parking badge. My daughter noticed and continued…

“Well, if I was disabled I would not want a blue badge…”
Another pause while I wonder how I should reply to this but before I can she continues…
“I would want a pink one! Girls should have pink ones!”
I smile to myself but secretly think she has a point.

“Is the car beside us disabled mummy?”
“Cars are not disabled darling. It is people. And yes either the person driving or someone in the car is probably disabled as they are in a disabled parking bay just like us
.”
“What disabled do they have?” (I should probably correct her grammar but decide that might interrupt the conversation too much)
“I don’t know. Sometimes you can tell quite easily if they need lifted into a wheelchair or if they use crutches but sometimes, like Isaac, you can’t see what someone is struggling with. There are lots of disabilities people can have.”
“But you can’t ask them can you? Because what if they are like Isaac and they can’t talk?”
“That is true
.”

The rain has stopped so I decide to get both children out the car and into the supermarket but my daughter still has plenty to say. As I hold their hands tightly my daughter raises another valid point.

“Why are all the other trolleys next to the parking bits but the one for Isaac always so far away? Everyone else can walk but he needs help.”

Good question!

imageAs we eventually find the trolley we need and strap her brother in she has some more observations.
“People that help like you mummy are very strong. And I think you need to grow too! The handles are very high up even I can’t reach them!”

Another valid point. This child will go far! She sees things most adults don’t.

She proceeds to carry on talking and questioning and commenting as I try to think what essentials we need. Meanwhile her brother flaps and makes noises and presses the same noise on his iPad continually. I finally make it round the store and pay for our goods.

On the way back to the car the rain has got heavier and my little blue-eyed six-year-old decides having a special bother is actually a good thing.

“At least we got to park near the shop so we don’t get wet. I don’t think disabled people like getting wet so that is why they have spaces near the door.”
She isn’t quite finished…
“If I had a shop I would have spaces for people with children, spaces for disabled people and spaces for people like you mummy.”
“Spaces for people like me?”
“Yes. Ones for tired mummy’s like you
!”
I am not too sure what to say to that idea but I do think it would be very popular!

As I drive the short distance home with them I am so grateful for both of them. Grateful for one who can talk, and question and discuss such subjects as disabled parking, changing facilities and suitable shopping trolleys and grateful for her twin brother who is making these subjects such everyday events and breaking down prejudice and taboos without even saying a word.

What does my six-year-old think of disability? She just thinks her brother is special. He has a blue badge, sits in a special trolley and goes to a different school. But he is her brother and she loves him.

Missing the bigger picture

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‘How will that impact on his sister?’, I asked at yet another meeting.
‘We are here to talk about Isaac’, was the reply.
This is the reality of life with more than one child.
In my case both my children have additional support needs, but even if my daughter was ‘typical’ developing she should still be considered when it comes to matters of her brother. The impact on her is just as big, and at times even bigger, than on her brother.
It is all too easy to say, for example, that we have to let one scream, harm himself and cry for hours on end as he tries to push boundaries and test limits. But how does that affect his sister? Or us? Would professionals be able to hear a sibling, or their own child, someone they love dearly, cry in distress for hours and not be effected?

I wish therapists would stop missing the bigger picture.

‘Sorry, we are not able to increase the allocation of supplies despite medical support.’
Another disappointing call updating us on an ongoing challenge we have been having.
People in an office, looking at limited facts on a screen, making a decision based on only the details of that one child with no thought to how this will affect an entire family, and beyond. My son is a number to them. To me he is a precious individual who deserves dignity, respect and to have his basic needs met.

I wish services would stop missing the bigger picture.

A recent visit to a medical practitioner with my children left me with some ‘projects’ to work on over the summer. The only problem is that both children have ‘projects’ that, while increasing their development and skills and helping their medical conditions, they will also both require huge amounts of time and support from me. I also need to be very mindful of the fact summer should be a time of fun, and making memories, and that my children will grow all too quickly. It is very easy for doctors and nurses to suggest health care plans, or developmental milestones to try to achieve, or even to give timetables to implement programmes of therapies. I smile, and leave with yet more literature while thinking all the time, ‘what about my other child?’. My time is not exclusive to one child, even if their needs would call for this, and I also have a house to run and a husband who needs me too. Seven weeks might seem a huge chunk of time to medical trained professionals but it can pass in the blink of an eye when I take into consideration hospital appointments, days out, quality time and household duties.

I wish professionals would stop missing the bigger picture.

End of term is bringing some challenges too, not least the fact my twins attend different schools with very different calendars of activities. The pressure to attend two different sports days, end of term assemblies and prize givings, services and summer fairs can seen rather overwhelming. How do you choose when dates clash? How do you fit in homework, or juggle after school activities with the extra needs that having a disabled child brings. A few times recently I have sent my daughter to school without her reading book, or her packed lunch, or her PE kit. And when school calls I am expected to leave everything to get these things to her, even in the midst of caring duties to her brother. Sometimes I am miles away in meetings, driving or simply changing a nappy. Each school sees one child. And they forget the family is much bigger than that one child.

I wish schools would stop missing the bigger picture.

It is easy for us all to see one thing in isolation: a child crying, a struggling mum, someone sitting alone in a cafe looking out the window. It is all too easy to hear noise from the house next door and come to the wrong conclusion, or berate someone for not keeping their garden tidy when the weather seems nice. Without realising we can be quick to judge or form an opinion, even when we have no knowledge of the background, or circumstances of someone else.

I have lost count the amount of comments I have had on my children because they ‘look fine’ or because they won’t reply to them or give eye contact. People are very quick to comment on the fact my children still use a dummy for bed, or wear nappies or carry a comfort cloth around. There is more going on than you think.

Let’s not be guilty of missing the bigger picture.

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So when did you become a carer?

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I bumped into someone the other day who I hadn’t seen for over a year. We exchanged pleasantries and briefly caught up. It’s hardly high up on the social etiquette rules to say ‘oh yes my kids are almost 6 but both disabled’, so I dodged the issue talking about the fact they are now at school (I didn’t even say where as that would take some explaining as to why one travels so far while the other attends the local primary), we are all well and how lovely it was to see her again after so long.

And then the inevitable question:

‘So what are you doing these days?’
‘Oh, I’m a carer.’

‘So when did you become a carer?’

What a good question!

When did I suddenly go from being ‘just’ a parent to my children to becoming their carers too?

moses basketWas it the day my children were born shortly after I first gave up full time work to start my maternity leave?
I was ‘just’ a parent then. New and excited and enjoying the beauty of holding two new lives.

Was it when they were around 9 months old and I made the choice to not return to work after my maternity leave?
I was ‘just’ another stay at home mum then.

Was it the day I first realised something was ‘wrong’ when I called my health visitor and they were only 18 months?
I was ‘just’ a worried mother then.

Was it when they were 21 months and the paediatrician first mentioned autism?
I was just an anxious, confused and upset mum then, frantically googling ‘autism’ hoping and praying there was some mistake. But I still didn’t see myself as a carer.

Was it when my children had their third birthday and still one of them wasn’t walking?
I may have been edging more towards a carer but everyone, including myself, still viewed me as a parent.

naomieegWas it when my children, first one and then the other seven months later, began receiving disability benefits?
Possibly. I guess signing as their ‘representatives’ should have made me realise. Over time I was doing more and more of a caring role but don’t all parents ‘care’ for their children? I was only doing what all parents should.

Was it when my children started having more hospital appointments than birthday party invites?
All kids need to see the doctor at some time, right? I was ‘just’ a busier than normal mum.

In truth I don’t know when it actually happened. I never had a starting date, I certainly have no finish date and it wasn’t something I ever planned on becoming. But the reality is both my children need twenty four hour care, well above what other children their age require. I am more than a parent:

I am a fellow professional at every meeting, knowing more about their needs than any of the others combined.
I am their voice when they have no voice. I will fight for them way beyond what anyone else ever will.
I am their advocate. I will take their side against all odds and push for what is in their best interest.
I am their driver, lifting them out and in transport, pushing them in wheelchairs, changing their nappies, and ensuring their health needs are met.
I am their nurse making sure daily medications are taken on time and reordered as needed.
I am their speech therapist, occupational therapist, mentor, and encourager. I spend more time doing exercises from therapists than I do doing homework from school with them.
I am their researcher ensuring new guidelines on their conditions are adhered to and they receive the care they should.
I am their educator when school has finished but they still struggle with the concepts and learning that others grasped easily.
I am their administrators filling in forms on their behalf and keeping their records up-to-date.

Over time my job evolved. I have a full-time job that brings me huge rewards but very little pay. I have gained patience, empathy, a sense of humour and the ability to function on very little sleep. I have become well versed on my ‘clients’ needs and wants. I am highly educated on how their disabilities and conditions affect them personally.

To many I am still just seen as a parent, a stay at home mum, or even an unemployed person.

But I am proud to be a carer.

When did I become a carer? When I realised my children needed more of me than I thought I would need to give. When I realised their care needs were overtaking my life as well as theirs. When there was no longer time to think about a job let alone apply for one or have one. When the meetings and appointments and paperwork became my life.

And I was finally ok about that.

My kid cried…let’s call a meeting

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Something about the ‘stay at home mum’ got lost on me this week. I was hardly home at all. One meeting was followed by another meeting, followed by phone calls and emails.
I am so grateful for having people involved in my children’s lives. I appreciate the work my children’s schools do and the professional involvement that they both have. But it is a stark reality that having two children with additional needs with two separate teams of professionals and two different school to deal with often means a whole load of meetings.
Add to that medical issues and everyday appointments like dentists, opticians etc and I once again realise why I am often more of a carer than a parent.

The reality is that meetings are necessary. I can not raise these children alone. I have had to ask for help. We have speech therapists, educational psychologists, social workers, occupational therapists, doctors, paediatricians, nurses, support staff, teachers, head teachers and carers all involved with the children. And they all need to know when things change.

Then there is church too. After almost six years attending crèche the tiimageme has come to discuss how we go about transitioning the twins into Sunday school in church. While other families just take their child to a different room one week, perhaps stay for a short time and then leave them, it isn’t that simple for me. So I had to have a meeting. The children need social stories, photographs of staff, visual timetables and lots of discussions about to manage behaviour, communication and anxiety.

Now school has returned and there are new teachers to work with, new support staff and medical issues to sort there has had to be meetings with both schools. I have had discussions with teachers, head teachers, support staff, seen where one of the children will be changed and sorted through lots of minor issues and misunderstandings. The transitions to new classes and starting school has been hard on the children. It has involved panic attacks, self harming, screaming, and a whole lot of tears. Only one of the children has the ability to tell me what has been going on. We needed meetings and phone calls to help sort out a whole page of difficulties for one child and meetings to sort out ‘unknown’ difficulties with the other child. School has brought with it such an intensity at times and family life has been very hard. While that is often just something families need to go through and you know it will sort itself out, when your child has a disability you have a duty to keep professionals informed in order for them to best help and support. No parent can have their child self harm or have daily panic attacks and just ignore it.

We had some teething trouble with transport. Lots of phone calls later and that seems to be more stable. We have had challenges with homework in a house where both children require 1-1 at all times. The balancing of needs is turbulent at the best of times but add homework into the mix and the storm hits with full force, from both children. So this needed discussed with school too.

Care plans needed updated, medical issues have needed addressed and sensory needs monitored. And it all involves lots of discussions and meetings.

At times it really has felt like the second one of the children cried we would be having yet another meeting.

Sometimes it would be nice to just get on with family life. It would be lovely to have privacy and not have to keep discussing daily how we will deal with today’s struggles and tomorrow’s worries. It would be wonderful to not have to read school diaries and feel the weight of concern when you read ‘they had a bad day today’.

But I have to accept that if my children have support then in turn I lose something of myself. I lose my time, my privacy and some of the confidentiality of family life. My children lose a lot of that too. In order to help there has to be meetings. People have to know when my children are in pain, highly anxious or upset. We do need to share sensitive information with others like when they have had bowel movements or what they have eaten. It has to be recorded for their health and well being. Sometimes that just upsets me. It can feel like an infringement of privacy at times but sadly for everyone these things need to be shared.

But can I tell you that today my kid cried. And I just dealt with it. No-one else will know why and there will be no meeting. Because in all these discussions my family still needs respect and privacy.

Just because my children have extra needs does not mean everyone has to know everything. Help us, don’t suffocate us.

I might just mention that in the next meeting I go to…