Why I will no longer say I hate summer holidays…even though I do!


My husband and I were having cross words again. Extreme lack of sleep, hardly getting time to eat and a house that looks like a toy shop was burgled, added to constantly demanding children and it was no wonder we were fractious.

 
Summer holidays are so hard.

In fact part of me actually hates them. 

We need a break”

“I just want the house to be clean and some time alone!”

“I hate the summer holidays”

 
They heard us.

 
I just unwittingly and unfortunately stabbed my child in the heart with my words. 

 
Silence.

 
We made ourselves a coffee and regrouped. Stress affects everyone and this summer has been particular stressful for my family. My autistic son has really struggled to adapt to change but once he realised there was no school he assumed every single day would be simply about what he wanted. When that does not happen he screams for hours (he has complex needs and is non verbal so none of this is his fault)

 
I made the kids (yet another) snack and we all calmed down.

 
Then a little tender voice broke the silence:

 
Mum, it’s ok. I will go back to school and just stay there. Please don’t collect me at home time because I want you to be happy”

 
And then she cried. Deep sadness overtook her and I held her as the pain of my earlier careless words wrecked havoc in her mind and her heart.

 
I do hate the school holidays. I hate them even more now.

 
Parents, like all adults, need to be able to express their emotions. They get stressed and tired and we really are just humans at the end of the day.

 
But I don’t hate my children. In fact I love them and enjoy being with them more than anything else. 

 
What I hate about the holidays is this:
I hate that holiday companies are allowed to ridiculously inflate their prices in school holidays preventing so many from getting away.

I hate that family attractions cost so much that they are out of reach for many.

I hate that everyday tasks like shopping are so much more stressful because children want to do fun things and get bored at everyday mundanity.

I hate that my children see parts of me they shouldn’t because the constant 24/7 means I can’t rest or eat without them.

I hate how isolated and alone my family becomes due to having a child with complex needs.

 
But despite all this I will never ever say again in front of my child that I hate the summer holidays.

 
She does not need to hear this.

Her mental health is of far greater value than my need to vent. 

 
Children hear us. What are they hearing when we say we hate summer holidays? They are hearing we hate spending time with them. They hear they are not wanted and they are an inconvenience to mum and dad. They hear that they are the cause of stress. They hear that they are making their parents sad. They hear we hate them.

 
So from today onwards I may vent in adult only places such as social media, I may text privately a friend to moan, I may even write my stress down BUT I will no longer utter those words again when my child can hear.
I love her way too much for that.

 
She is the reason I will never say again publicly that I hate summer holidays, even though I do. 

 
Something to think about perhaps?

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Let them play

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Let them play!

My heart is happy. My son is sitting on the living room floor with a large canvas bag and a pile of teddies. He fills the bag full of teddies, takes them out one by one and then refills the bag once again. It may seem very different to what other seven year old boys do but he is playing.

So I let him play.

Sometimes I get right down on that floor beside him and name those teddies. ‘This is Elmo’ and ‘This one is a panda’ and so on. I almost feel pressured to turn his play into a learning experience or a speech and language therapy session. When your child has significant disabilities and delays the pressure to use anything to ‘bring them on’ is overwhelming. But sometimes they just need to be children. Sometimes we need to allow them to explore and learn and enjoy being in their own world.

So let them play.

When the weather is more favourable we like to go to parks. Sometimes we walk about, or have a swing or venture down a little slide. I have to be so careful that any places are fully enclosed and have equipment that can take the weight of an older child still using frames build for younger, much lighter, children. But mostly our biggest problems is the general public who see my child licking the equipment, or flapping or running around in circles and they mock. And while he knows no different, I do. So he loves the baby swings, so what? He takes a whole lot longer than other just to climb up a few steps and manoeuvre his body down a slide. So what? He is enjoying the park, the fresh air, and learning from others.

He is playing.

I can’t let him be in the garden alone. He can’t join a football team or a drama club. He can barely balance enough to run never mind ice skate or dance. But boy does he love a good tickle! Or some rough and tumble play on the bed. He loves nursery rhymes with actions even if he can’t do any of them himself yet. He loves stories and videos and Peppa Pig. He loves sensory activities like lights and repeating sounds. He likes buttons to press, tummies to squeeze, toys that pour out and anything with water. His toy collection is all things for under three year olds. I am totally fine with that because they make him happy.

And they enable him to play.

We haven’t reached the imaginative play stage yet. Or the social play. He can’t read or write or even speak. He can’t kick a ball or throw and catch. Cars are just something he puts in his mouth to chew on. But fill a ball pull full of toy plastic food and he will sit there for ages exploring, looking and rummaging. He loves his iPad. He loves a DVD player. But most of all he loves his mummy.

So before he gets bored of those teddies I am off to play with him. It is one of the most important and most beautiful things a child can do.

However they do it…let them play!

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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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For the love of my child

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I will endure months of feeling sick and exhausted, and craving food combinations that are totally crazy just knowing it is because you are inside me.
I will face needles and tests and personal questions by strangers because you are changing my body in ways it has never been changed before.
I will research car seats and prams and clean areas of my house that haven’t seen a duster in years because I want to protect you.
I will endure pain on a level I never thought existed before for many hours on end just in order to give you life.
And when I first hold you all this will forever disappear from my memory because you are worth it.
For the love of my child.

I will repeatedly feed you, wind you, change you, and comfort you in a never ending cycle day and night because you need it.
I will exchange current pop music for lullabies, fashion heels for slippers and home cooked meals for a cold cup of coffee because I just want to be with you.
I will spend all night holding you while googling ‘help for colic’ or ‘cures for the teething baby’ because I only want the best for you.
I will cry when you say ‘mamma’ and video you when you take your first steps because I never knew what pride was until you came into my life.
For the love of my child

I will watch you with wonder, photograph you in the hope of remembering every last detail of your day, because I want to remember you.
I will measure medicine to the exact fraction of a millilitre, and cut grapes into tiny pieces to prevent you choking because you make me scared sometimes.
I will play make-believe games with you and talk to you like you are the most amazing person in the world because every moment with you is precious.
I will plan birthday surprises, take you to parks and splash in water at the pool with you because you make me smile everyday.
For the love of my child.

I will bubble on your first day of school and cheer you on at sports days because you are everything to me.
I will encourage you to do homework even when it is challenging for both of us because I want to teach you.
I will push you to go that bike or practice that dance recital because I believe in you.
I will nag you to brush teeth, wash your hair and be the best you can possibly be, because you are beautiful to me.
For the love of my child.

I will sometimes seem like your biggest enemy whilst always remaining your greatest ally, because we are too alike.
I will listen to your worries and hear the latest ins and outs of all your daily issues because I care deeply.
I will watch as you change from a toddler to a child to a teenager while it seemed like I was dozing because time passes far too quickly.
I will drive you places I would never go myself and buy you clothes that I have no idea what part of you they will cover because I respect your choices.
For the love of my child.

I will be overcome with emotion and pride at everything you achieve even if it seems trivial to you because my heart belongs to you.
I would spent my last penny on a new car for you or to see you through university because no sacrifice is too great for you.
I cover my walls in your photographs because my memory needs reminded so often of everything about you.
And even if I die I want the world to know that I lived my life and did it all
For the love of my child.

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Just imperfect parents raising imperfect children

I have a confession to make: I am not a perfect mum.image
I just needed to get that ‘out there’ without feeling a failure or weak. The truth is none of us are ‘perfect’ parents and none of our children are ‘perfect’ either. We are all muddling through as best we can. It’s just some of us are under more scrutiny than others.Most families get to raise their children with minimum involvement from others outside of their own family. I don’t have that luxury. And while I am grateful for everyone who supports us it also comes with huge pressure to ‘perform’ and ‘jump through hoops’ at times.
I left another multi-agency meeting this week in tears. While no-one actually came out with the line of ‘it’s the parent’s fault’, there is always a feeling of inadequacy that comes with having children who have ‘extra needs’. Sometimes it can feel like your best is just never enough.
So I just need to get this out:
I am not perfect and neither are my children.

My children throw tantrums often for the craziest of reasons, they have more screen time than they should, sometimes we are still in pyjamas at lunch time at the weekend. I sometimes let them sit right in front of the TV even though I know they shouldn’t, I help them get dressed some mornings for school just because it is quicker and easier, and I have even thought about doing homework for them because I just can’t face another battle (I said thought as not quite mastered the art of writing and spelling like a six year old).
My children have off days.
And so do I.
Just because my children have special needs does not make my family any different to any other. In fact we are probably more exhausted, more chaotic and busier than many other families.
We live in a glass house at times where teachers, social workers and therapists feel they can tell us where we are going wrong and what we have to do to help our children. Sometimes it is helpful; sometimes it isn’t. I don’t have all the answers, but neither does anyone else.
But we are doing our best.
It is easy for others to judge and criticise and ‘guide’. And there are times when someone outside of the situation can see things we just can’t which is helpful and supportive. But on a daily basis we live this.
I know I get it wrong at times. And I know other times I get it just right. Sometimes my children master something new, sometimes they don’t.
Special needs parents are no different to other parents really. But because our children ‘struggle’ in areas it puts pressure on us to ‘fix’ them and support them when all we really are is imperfect parents raising imperfect children.
When we get it ‘wrong’, be kind. When we get it ‘right’, encourage. We are all raising unique, wonderful, individual children with different qualities and skills. And we are all doing it in the best way we can.
My children’s struggles may be obvious but everyone of us struggle, wether child or parent.
Be kind, be supportive, and don’t judge.
Every single one of us are just imperfect parents raising imperfect children at the end of the day.

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
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“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
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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
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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.

They never told me THAT at diagnosis!

imageThey never told me THAT at diagnosis!

So I am a ‘special needs mum’, more by accident than choice. I have six-year-old twins who have an array of medical and developmental diagnosis. There have been a number of occasions when we have sat down with doctors, specialists and psychologists to receive spoken, and later written, diagnosis and each time brings a huge array of different emotions. But over time you realise that while professionals may give you a ‘name’ for what your child is experiencing there is so much else they DON’T tell you. Here are a few things no-one told me when my children were diagnosed:

1. This won’t just affect your child. It will affect the entire family.
Having a child with a genetic condition, or a developmental disability or who requires on-going support, puts a huge strain on everyone in the family. Parents have to walk through their own private journey to come to terms with, and hopefully eventually accept, that life is not going to be quite how they planned it. And siblings have to cope with perhaps not getting the same attention they need or facing seeing their brother or sister go through things no child should ever have to. Grandparents, uncles, aunts, and extended family members don’t always know what to say or how to support and so sometimes appear to criticise or upset when perhaps they never intended. It is like dropping a pebble in the ocean and seeing it ripple out way beyond where it first dropped. No-one told me that at diagnosis. I wish they had. I may have been more patient with family if they had.

2. This will put a huge strain on your relationships.
Even couples who are incredibly close and resilient struggle when you add in the added complication of a child with a diagnosis. Blame, jealousy of the child’s needs, extra financial pressure and lack of sleep, make it so difficult to maintain a healthy relationship on top of the caring responsibilities of a special needs child. Then there is the strain put on friendships when you can’t make as many social events or you cancel things at short notice. Social gatherings such as weddings, parties, and christening become quite a burden to a family who can not readily get a babysitter for a child with additional needs. I wasn’t prepared for how a diagnosis would affect my marriage and my friendships. I wish someone had told me. I may have been more understanding if they had.

3. This will stretch your finances beyond recognition.
Raising children is expensive. Raising a child with any sort of diagnosis is even more expensive. Hospital visits cost not only in travel and parking costs but often in food, treats for your brave soldier and perhaps time off work. For many families giving up work to become a full-time carer is the only option and that brings with it a drop in income that never seems to get replaced. Private therapies cost and toys with the words ‘special needs’ in front seem to double or triple in price. Extra heating to keep a sick child warm, ongoing clinic and therapy appointments, carers, equipment, specialist clothing, continence products and replacing broken communication devices all put a huge strain on the financial situation of a family. I had no idea about this when we first had a diagnosis. I wish I had known. I may have been more prepared for it if I had.

4. Everyone you speak to will now be an expert.
When I had no ‘name’ for my children’s challenges people were happy to listen, offer a hug and at the most perhaps suggest a few things they thought might help. But mostly people just felt sorry for me or my children. But once we received that all important diagnosis (especially for some reason when one of the diagnosis was autism) everyone seemed to suddenly become an expert! We needed to urgently start this therapy or that therapy! It was because we had the kids vaccinated! It was the stuff we fed them! They knew someone who had the same thing and they took this vitamin or read this book and now their child is cured. And so on. We were judged, and corrected, and criticised for everything from the moment we mentioned the diagnosis! No-one told me that at diagnosis! I wish they had. I might have developed a thicker skin quicker if they had.

5. Diagnosis is the start of a journey not the completion of one.
When you have spent months and years fighting to get your children’s needs recognised and acknowledged, when you have been on waiting lists for so long you can’t even remember the person’s name who referred you in the first place, when you have put your heart and strength and fight into this one thing, you can easily see the diagnosis as the end of a very long journey. It is three years this month since we were told my son had classic autism, global developmental delay and severe learning difficulties. Three years on and I am still fighting his corner, still trying to get people to listen, and still pushing for more support. I naively thought everything would ‘fall into place’ after we had a diagnosis. Sadly that never happened and I have discovered it rarely does. They never told me that at diagnosis. I wish they had. I would have saved some of my strength and stamina if I had known.

6. There will be days or years later you will still be sad.
I expected to cry the day we were given the diagnosis. What I didn’t expect is that years later there would still be days I would look at my child and cry. That does not mean I am not a happy person. My children fill me with pride daily. They are achieving in their own way all the time. But some days I watch them struggle. Or see something another child does easily that they have yet to master (like talking or waving goodbye) and the tears come easy. And I have realised I am not alone. Some days I relive that diagnosis day and it stabs me in the chest as much as it did the first day I heard it. I don’t live there anymore but I still hurt. And that is ok. It’s just no-one told me that on diagnosis day. I would have kept some tissues with me had I known.

7. Diagnosis doesn’t change your child. Love does.
I looked at my child differently the day they were diagnosed. I saw a child struggling with medical issues or developmental issues and I worried for the future. I saw a life mapped out for them I never planned nor wanted and that broke my heart. I thought the diagnosis would somehow define them. But years later I realise that has not happened. As time has gone on people see my children simply for who they are not the name given to their communication difficulties or social struggles or medical challenges. When I introduce my children I just call them by name. That is who they are. That is who they will always be. They never told me THAT at diagnosis. Maybe if they had I would have realised it would all be ok.

They gave a name that day for the collection of difficulties my child presented with. But that was all. A name. A word. Something I could learn more about to help them. They took my breath away for a moment. But they never ever took my child.

My children are awesome. But they never told me THAT on diagnosis day either. That is ok though. I tell them that everyday anyway!
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