How did you meet me?

Did you meet me many years ago, a child innocent and free, more interested in dolls and card games than school, influenced by the beliefs of my parents more than the media, eating food that others made me without thinking of the cost or how it was cooked? Had you met me then you would have known a very different person to who I am now. The innocence of childhood is long gone now.

IMG_1323Did you meet me in high school, a teenager preoccupied with my puppy fat and how to avoid being bullied? When it felt like the weight of the world was on my shoulders as I struggled with French homework that made no sense and tried to remember the periodic table of elements. A time when friendship was someone to stand beside at break time, when my view of life became tainted by smokers in the school toilets and the pressure of exams made me cry. The confusion of my teenage years is long gone.

Did you meet me at university, a naive student who had yet to taste alcohol or party right through the night? The novelty of living alone soon forgotten when the loneliness and homesickness set in every night. When a determination first set in to achieve and my views of child development were rose tinted and way more fantasy than reality. When I let my world fall around me as the first person to ever call me a failure spoke into my life. Had you known me then you would have met an insecure and way too innocent student ill prepared for the reality of a full time career in teaching.

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 Did you meet me when I first fell in love, a believer in happy ever after, dreamer of happy families? When I consumed myself with wedding planning and being with my lover more than anything else because life suddenly seemed amazing, and bright and exciting again after the failure of university. Did you perhaps watch me walking down that aisle full of hope and love and a belief that together with my new husband life would be everything we wanted and more? It takes so much work to keep that spark, excitement and fire going. But the depth of love has not gone cold. I pray it never will.

Did you know me through those wilderness years of bitter disappointment, early pregnancy loss and grief of infertility, when darkness could overshadow me so suddenly I felt like I was being devoured? You may have met someone so negative at times, so consumed with their own pain it was difficult to see the hurt in others, someone so emotional and yet appearing cold in order to protect my heart from pain. Someone trained in child care yet avoiding anywhere children could be found. Someone who worked four and five jobs just to keep busy so as not to face the uncertainty of life. The pain of those years and the volume of tears may have subsided but the lessons learnt run deep inside my heart.

Did you meet me during the exhilaration and thrill of the birth of my babies when I wanted to scream my story out to the entire world and explode from happiness? Did you send me a card or buy a gift for my children? Or at some point on my journey shared with me as you bore children at the same time, experienced teething in your children as I did in mine or liked my children’s photos on social media? There is nothing more bonding for woman than sharing experiences of their children. I may have bored you with stories of their funny faces, silly antics and baby smiles. The beauty of those years will live long in my mind.

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Did you meet me through the agony and pain of realising my children where different, of never ending appointments and devastating diagnosis? Have you journeyed with me through autism, neurofibromatosis, vision impairment, faith, sleepless nights, developmental diagnosis and fighting the system? A mother so emotional yet determined, so overwhelmed yet so focused, needing to learn but struggling to cope. Have I poured out my heart to you in person or online craving that knowledge that someone somewhere cares and has been here before to show me the way? Have you seen me tell someone else it will ‘be OK’ and you wondered where or how I can find that confidence from?

My heart has been changed now. Compassion has taken over. Where there was once judgement there is now empathy for others. Where there was selfishness there is love. I am not the child, teenager, student, wife, or mother I used to be.

Life has a way of changing people. Disability has a way of changing people. Children have a way of changing people. Faith has a way of changing people.

Everyone’s journey is different. Forgive me if in the past I judged you, acted selfishly or was aloof towards you.

How did you meet me? You met me on my journey and my journey isn’t over yet. Bear with me as I keep on walking.

It has been lovely to walk with you for some of the way.

Thank you!

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They can’t just “get over it”

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My son has Neurofibromatosis type 1: he can’t just ‘get over it’. He has it for life. The implications of it are unknown.
My daughter has autism: she can’t just ‘get over it’. She has it for life. How it will affect her in the future is as yet unknown.
My son is non verbal: he can’t just ‘get over it’. He may be non verbal for the rest of his life. He may not be. We just don’t know.
He also has autism, visual impairment and learning difficulties. You don’t just ‘get over’ any of those either.
My children are both incontinent. Well, guess what, they won’t just ‘get over’ that overnight either!

It is hard to understand. I have hope because I need to have hope. But there is no magical cure. The future is uncertain and I have to live with that.

But one thing I do know is that my children are doing everything they can to make the best of their lives. So when they get upset or struggle or become overwhelmed it isn’t because they have given in, or because they are spoiled or want their own way, or because they want an easy life. It is because they have disabilities; disabilities that may be unseen but are very real. You may look at them and think they are fine. But they are not.

The world is confusing and loud and overwhelming for them. They rely on support networks that others don’t need as much. They see the world in black and white. They take things literally. They overgeneralise. They look at things from a completely different perspective. They have sensory overwhelmed from places that cause others no issues. They have anxiety to a scale many will never be able to imagine. They struggle with simple everyday tasks that we take for granted. Everything is an effort, a big deal, a massive achievement.

My daughter lost her comfort blanket and she was distraught. It was impossible for her to ‘get over it’. She had had the same cloth since she was a new born baby. No other cloth was good enough. Nothing else smelled, felt, looked or could offer her comfort like that cloth. Maybe all children have to grow up at some point. Life has disappointments. Special things get lost. But a child with autism can not ‘get over’ anything just like that. Her whole world turned upside down. Her sense of security and comfort disappeared. Her brain had to process that her cloth was no longer available. The depth of sadness this brought was tangible. It was found again but her faith and security in life remains uneasy. Something of paramount importance to her was lost and now she worries that something like that may one day happen again. That is a huge amount of stress for any 5 year old to carry around all day. She will never just ‘get over’ something like that. Her world changed. And I can never fix that for her.

My daughter is coming home from school in tears. She has a long list of things causing her distress. She isn’t just wanting her own way or demanding she is someone special. She can’t cope with noise or crowds or new unfamiliar routines. She is struggling to keep up with her peers and in the midst of sensory overwhelming in school she is finding listening to a teachers voice a real struggle. This is not made up stories. This is sensory processing difficulties. This is autism.

I took her in the front door of the school this week to avoid the playground. Another parent spoke to me when I came out. In her opinion I am spoiling my daughter. I am babying her. She just needs it get on with it like all the other children do. She just needs to ‘get over it’.

If only….

If only my kids could ‘just get over it’…

They may learn to cope better as they grow. But they will always have nf1, or autism, vision impairment and learning difficulties. The same way others have health conditions, mental health issues, struggle with bereavement or loneliness. Be patient with people. Have compassion. There are very few things in life people ‘just get over’. Most people are trying hard. I know my children are.

“Be completely humble and gentle; be patient, bearing with one another in love” Eph 4:2
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There is more than meets the eye

 

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It is the first day of the new school term here and my daughters first ever day at school. I took the standard parent ‘first day back’ photos and posted them on social media. The usual comments ‘they look so smart’ ‘good luck’ and ‘have a great day’ all touch my heart.

There is so much that has gone into today, way beyond the simple purchasing of new school wear, shoes, washing and ironing uniforms and packing bags. For weeks now I have had to prepare these children for this major change in routine, even though it was previously familiar to Isaac. Seven weeks is a long time in a child’s life to get used to going out with the family, eating lunch at home and playing with toys and technology.

So my autism mummy mode took over and prepared social stories for Naomi, visuals for Isaac and lots of walks to Naomi’s new school even though it was closed. Both of them have books all about their summer to take into school. And we have read about Topsy and Tim, Biff, Chip and Kipper and everyone else you can think of starting school!

Isaac has a photo album full of stories and photos to share with his teacher. He has no other way to share his experiences from the last two months as he can not speak. I sat with him for days going through all the photos we had on his Ipad and having him point to the ones he especially liked. Then I sent them off to get printed. There was no surprises that the majority featured food! But it is his story and if he was able to talk these are the things he would want to tell his new teacher about. As his teacher is brand new to the school and only knows about Isaac from information the school has (assuming this has been read), I so hope someone will sit with him and take a few minutes to allow him to share his summer with them. This is as much about transitioning from home as it is to school. We are all in this together.

Naomi’s new school had given the children a summer scrapbook to do at home. The pages were blank which immediately caused Naomi huge anxiety. She needed guidance and instruction and clear boundaries and pages that could contain ‘anything about your summer’ where far too vague. So I helped her structure her ideas and we had a lovely time together as she drew her family, stuck down photos of some things she enjoyed and cut pictures from magazines. Once again I hope someone takes the time to get to know my daughter and puts no pressure on her to speak if she can not yet overcome her anxiety to do so.

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We hit some very real challenges when we found out that transport arrangements for taking Isaac to school were all changing. I sighed. If only the ‘powers that be’ had any idea how change affects my babies. For the sake of saving pennies they change contracts and providers taking no account of the needs of the children. How would they feel to watch their child bite himself, bang his head and run back inside the house when he has to meet a new driver and escort and see a new taxi? I bet their heart would break like mine. But I swallow hard and do what we can. Take photos of the people, the taxi, and his school. But still we have the screaming and the self harming. And all I can do is pray; pray that he might one day understand, pray for patience for these new people in his life and pray for a way to help my baby understand. And then I realise our fatal mistake! We arranged for them to visit at dinner time! It really was that simple. We had been saying ‘see taxi’ and ‘new driver’ and ‘school taxi’ to him and in his mind he never gets in a taxi at that time of day and he certainly doesn’t go to school after his tea! So when it came to the day, the one you all see the photo of, off he went. Because that was right: first taxi, then school! And the promise of a school dinner had him flying right out the house. (was my cooking for the last seven weeks really THAT bad?) Can you tell any of the trauma we went through just from the photo?

There’s more than meets the eye.

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As I took Naomi to her school for the first day and finally left her in her classroom sitting at her desk with all the other children I had the same emotions as all the other parents there. What you don’t see is the fact she is the first child to go to that school who isn’t toilet trained. She is the only child in the room wearing a nappy. And she drank her milk that morning from a bottle too. But as all the other parents made their way out of the building a line of adults waited to talk to me. Then I suddenly realise there is more going on: An autism outreach worker, two classroom assistants, the class teacher and the new Head teacher too all waiting to introduce themselves. Though they were not in today there will also be speech and language therapist, occupational therapist and various other professionals involved too. Because I have pushed for as much support as I can get. She may be going to mainstream but she will jolly well be supported.

There will be meetings, reports and iep’s written up within weeks. There are still some unknowns but she went there today, and she held it together. And I am so proud of her for that.

This afternoon and tonight we will have the aftermath of the first school day. The stress doesn’t end for these children at the school gate. Autism, nf1 and developmental delays are 24-7. We will have it today, tomorrow and forever.

The photos are a great memory of one special day. Thank you for liking them, commenting and loving us.

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Please remember though that behind those photos there is more going on than meets the eye.

And that will be the same for so many families of special needs children too. 

They just sat there holding hands

The long summer holidays were coming to an end, it was getting ever closer to the children’s bedtimes and they were having a little time on technology while I tidied up. They were quiet so I turned around to check on them to see them engrossed in their own worlds but yet so closely bonded in each other’s worlds they were sitting holding hands. It was one of those moments you just had to be there. It was sweet, intimate and special. It was beautiful:

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They didn’t need words (which was perfect since one of them is yet to speak) and they didn’t need to look at each other (even better since they both have autism). A powerful image of two people connected against all odds. A moment of love.

I have had five years and nine months to look at their hands. I remember when their hands were so tiny they could curl round a single finger of mine. I remember holding their tiny hands in a gentle fist while I slipped their arms into little baby grows and cardigans. I remember holding their hands when they needed me to balance them as they took their first steps. I remember gripping their little hands as I showed them how to climb stairs, holding their hands as we walked in shops, climbed up hills or along paths. This week I will take one of those precious hands and hold it as I walk my daughter to school for the first time. Precious moments of love, guidance, bonding and closeness. I know one day she won’t want her mummy holding her hand but until that days comes I treasure that intimacy with her.

One of these little hands will learn to write soon. But while her brother may not do this for a long time to come it doesn’t stop them being close. Summer has brought them so much closer to each other. It has given them more shared experiences together and time in each other’s company. They prefer to be together. Education is separating them but love is joining them.

And while one of these little hands will turn pages in a book, paint pictures, thread beads and cut and stick things the other hand is still be used as an essential means of communicating. It is only in the last year that my son has leant to use his hand to point. I still dream that one day he may use his hand to blow me kisses, or wave, or stroke my face. But right now I rejoice he still uses his hand to take mine to what he wants.

Therapists want my son to take my hand less and use other means of communicating. While I see the advantage to this there is something so special about a little child leading you by the hand to show you what he wants. It connects you physically when there is no language. It tells me he loves me without any words leaving his mouth. And as he uses photos and pointing more I miss those moments when he sought me out, pulled at my hand and led me to what he wanted.

I may not always be around for these children, though I pray God sustains my years on earth for many years to come. But seeing them together, knowing that despite all their challenges they have a deep love for one another, that from the moment they were conceived they have been connected. Seeing my daughter put her hand over her brothers to teach him what to do in a new game, watching how she holds a straw in a glass of juice for him to help him have a drink, observing how she tenderly strokes his arm when he gets upset…I just know that they will always have a friend in each other.

I wanted to kiss them both, explain how special this moment was to them, talk to them about the significance of what they were doing… Instead I smiled at them and took a photograph… While they just sat there holding hands.image

He ran into the arms of his mum

 

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He ran into the arms of his mum

I dropped you at your play club
You never waved goodbye
I never got a kiss on the cheek
You didn’t even cry

You ran to knock the chairs down
You never looked back to see
Did you even know I was leaving?
Do you actually care about me?

Did you think about me during those hours
When you run around and play?
Or do you just live in the moment
Forget I exist for the day?

You’re never far from my thoughts
I don’t like letting you go
But you’re not one for emotion
So I try not to let my tears show

It’s hard to offer you comfort
When you are always pulling away
But you love me stroking your head
And would let me do that all day

I’ve learnt to live on your terms
I’m trying to understand
The reasons you don’t like folk near you
And you don’t like holding my hand

So when you come and sit near me
With a photo you just want to share
It makes my heart leap for joy
Feeling you close sitting there

I cling to those precious moments
The times when you’ve sat on my knee
I can’t stop kissing your hair
But soon you are off running free

So I come to collect you from play club
Praying you might look in my eyes
Hoping you respond to my voice
But you give me a glorious surprise

A staff members calls you by name
You turn to see me smile
Your face lights up like the sunshine
Your legs start running a mile

You ran right into my arms
I hold you tight as you come
I’ve yearned for this moment for years
He ran into the arms of his mum!

He ran into the arms of his mum!
The tears have started to come
There is nothing like holding your son
When he runs into the arms of his mum

Bringing healing to my heart

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I must be one of the few parents who delight in hearing my daughter being cheeky. That does not mean I will not be teaching her and training her in how to behave but there is something about her giving smart remarks, exerting her own will and asking for treats that actually brings healing to my heart.

Oh how I would so love to hear her brother shout back at me in frustration because I have corrected him for something he didn’t like or respond to some remark I say by giving a remark back of his own that showed understanding, quick thinking and advanced cognitive processing. Oh how I wish he was able to exhort his will verbally by saying ‘no, I don’t want to go there mummy I want to do this instead.’ I would actually cry if he said something similar to my daughter who told her daddy today “I am fed up with you being grumpy.”

I didn’t tell my daughter how amazing that comment was. In actual fact she was corrected for speaking to her dad like that but inside she was bringing healing to my heart.

This is how it is supposed to be.

You are supposed to hear your young child say things that seem cheeky or naughty. As part of their development it is normal for them to hear worlds others say and repeat them at times they are not supposed to. Children make grammatical mistakes and even make up words of their own. You expect them to get frustrated at times and even shout at you. They learn to whisper, scream, tell jokes, share stories and experiences and express emotion all hopefully within the guidance of a loving and secure home. And they are going to challenge, delight, make us proud and give us plenty of things to smile about. We get to read to them, share our lives with them and build them up. We get to interact and communicate with them and hear what they like, who their friends are and what their day has been like. And because we teach them to communicate we can eventually allow them freedom knowing they have an ability to share any problems or concerns with us as they grow and mature.

Except my 5 year old son still can’t even say ‘mamma’. He can point to a food he wants or scream if he doesn’t want something. He can hold my hand and take me to something if he knows where it it and I can make a guess at what he wants. But he won’t let me read to him, he can’t communicate in any way how he is feeling or if he is in pain, he can’t tell me what he has done that day if he has been away from me, he can’t shout at me in frustration or anger or tell me he loves me. He hasn’t got the ability to make up stories to tell me about his favourite characters, or be able to ask for some programme on the TV he wants. He can’t even ask for sauce on his dinner if he does not know where it is. And because of his severe communication difficulties and learning difficulties he has very limited freedom.

So yes, I would love him to be cheeky to me one day. In actual fact if he told me he hated me it would bring healing to my heart. It would show he could speak, could understand basic emotion and it would be a three word sentence said in context. It would be music to my ears!

His sister has no idea how much I need to help her build train tracks, and talk to her about her beloved Thomas trains. How I delight in hearing her made up stories based on episodes of Thomas the tank engine she has read or watched. How I could spend all day with her in the garden pretending it is a cafe and she is serving me food. The simple delights of interaction and imaginative play bring healing to my heart. How my heart jumps for joy when she asks for a shed for her engines because she has seen one in a shop, and how I still smile inside when she gets stroppy that I said it was too expensive. Because that strop means she understood my language, her asking showed she can form full sentences and request in a way everyone understands and her approaching me showed she knows that communication has a purpose and can get her what she wants. And the healing continues in my heart when I say we can make a shed instead. She trusts me, she is connected to me and she is willing to wait and watch while I stick some boxes together to make her a shed.

Oh how I wish her brother could ask for a toy, understand the concept of cost and the fact it was too expensive, express his upset at this, and be willing to accept a compromise based solely on my use of language. Oh how I wish he would even play with toys in a meaningful way rather than chewing them.

As we pass the halfway mark of our summer holidays we are looking at uniform purchase for Naomi. There was no uniform to buy in the shops last year for her brother. It was jumpers and t-shirts from a school supplier and simple jogging bottoms. We never had the tie, or shirt, or school trousers. And the buying uniform is healing that place in my heart that longed for this experience. This is how it should be.

I will get to walk my daughter to school soon. It will be emotional in so many ways. But it will help that healing. I never had that with her brother as he has to go on transport 13 miles each way to a school for children with complex needs. To walk my daughter to school, talk to her coming home about her day, find out the name of her friends, hear what picture she has on her peg; those simple acts parents take for granted. Those are special. I get to have that photo of her first day going into school.

Everyday I realise how much I have missed with my son. I treasure the moments he wants to sit near me, or smiles at me, or hands me his iPad to change the google images for him. I love every moment he takes me hand and leads me. Those moments bring me healing too.

But seeing my daughter just being a child, hearing her voice singing and chatting and asking me endless questions, hearing her tell me she loves me.
There was a place in my heart that was empty. I never knew how hurt and broken that place was. But my sweet little daughter is soothing that pain and reaching into areas that needing that healing balm of oil. She needs me. I need her. And I need her brother too.

One day he might say ‘mummy’ again. One day he might kiss me or tell me he loves me. One day I might even correct him for giving me cheek. One day I might be able to make him a toy he wants and see his face light up as we play together with it.

And those moments will keep bringing healing to my heart too.

Never take a child for granted. Cherish every moment.

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Ten tips for surviving the summer holidays with special needs children

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Three and a half weeks ago my children finished up at school and nursery for 7 weeks holiday. Although I love my children deeply I admit I was worried how we would cope with the pressure of looking after both children without any breaks day or night. Both my children have autism, one has neurofibromatosis and other complex needs, and they are both fully incontinent. One of them is non verbal and very delayed. They both have medical problems and need a high level of supervision and care.

So how do parents like me cope with being mum, entertainer, taxi driver, speech therapist, nurse, occupational therapist and support workers to our children for almost two months without a break?

I may not have completed the holidays yet but here are my top ten tips for survival when the kids are at home all the time:

1. Try and keep some sort of routine in place if at all possible.
I have been getting my children breakfast, dressing them and washing them in the same order as I would on a school day. Once they are fed, changed, dressed and clean I have a much better chance of them settling with toys, or a DVD or an electronic device for ten minutes while I get myself washed and dressed. An uninterrupted shower is a luxury but you would be amazed how you can multitask having a shower while also supervising a child brushing their teeth. Thankfully my two are still young enough to not worry about privacy too much. And I do have the advantage that one can’t tell anyone anyway :)

2. Don’t feel you have to go everywhere just because you have been invited or there is something special on.
My children have a habit of waking through the night or getting up at 4 o’clock to start the day. By midday they can be tired, grumpy and very unsociable so I try not to commit to many events and go with how the kids are. Busy noisy places are very difficult for both my children to cope with so I thank people for their invites and say we will come if we can. The stress of feeling we have to go is too much for me and then the children feed off that stress. They need time to transition from one place to another and ideally they need to know where we are going beforehand. My daughters anxiety means that just turning up somewhere we haven’t been before would have her very distressed and confused. I may not be at your event but we still love you and I am grateful you invited me.

3. Only do the essentials of the housework while the kids are at home.
Sometimes we have to move house or do repairs while the children are off but if it can wait, let it wait. Trying to make my house into a show room while my children are at home is fruitless and way too stressful. They need clean clothes, clean plates to eat off, a clean floor to play on and a bathroom that is tidy and useable. When they return to full time education I can clear out their toys, redecorate and give the garage a good clear out. Trying to do these with two children at home with high care needs is asking for a disaster. If you missed the five minutes in the morning when my living room was tidy then I apologise. I tidy up at night enough to find the sofa and floor and put my feet up before falling asleep. By 6 am the train track will be back on the floor again for another day of playing with Thomas. One day I will look back with fondness at these times even if at times the clutter of children seems t be screaming at me to get tidied away.

4. Kids appreciate the simple things.
Theme parks, soft play centres, farm parks and expensive garden toys are all wonderful. But someday the children just want to spend time with you. Only one of my children can kick a ball, but the other can lift it up and walk away with it. We have had so much fun in the garden and in local secure parks with a simple ball. Both my two would also happily play in local parks being pushed on the baby swings for hours and going for walks. My son would flap at the bushes all day if I let him. Few of us can afford to take the children to expensive places all summer so I have been balancing trips out with time at home. We have been blessed so far with wonderful weather so parks have become a firm favourite. We have also loved the fact that the sun has made soft play much more accessible as it means the centres indoors are so much quieter. Some centres have even put on special offers to attract customers during the warm weather. We also found out that children travel free by train locally so we have had some lovely train trips. It hasn’t been about the destination for the children but in fact the journey itself.

5. Make home fun.
My daughter had a nose bleed last week and we had loads of bedding to wash and change. Both my children found it hilarious to watch me put on a duvet cover. So I went with it and made it into a game. My son then found some towels drying on a bannister and dropped them down the stairs. For him it was such a fun game. There really is no point trying to explain how this makes more washing and could cause someone to have an accident. He has no understanding of all that. So I went with the moment and had great fun with some towels. Simple childhood fun. If the train tracks are out I am down on the floor playing and interacting with them. If you can’t beat them…join them!

6. Internet and evening shopping is the way forward.
I am blessed to have a husband and although during the day it often takes two of us just to meet the children’s needs, once asleep it only needs one person at home. So I rejoice in 24 hour supermarkets and online deliveries. Trying to drag two 5 year olds around a supermarket is worse than pulling teeth. And sadly food won’t just appear in my kitchen. So we have adapted to work around it. It may not be our ideal but it is just for the holidays. I never thought before I had children that I would say a supermarket at 10pm was a luxurious break. Believe me, during the holidays it is!

7. Choose your battles.
I do this all year round but more so in the summer. My son will only wear his school jumper so why fight. The days are long enough and the nights too short for me to battle needlessly. If my daughter wants a chocolate spread sandwich for breakfast I rejoice she is eating. If it means I can cook a dinner then they can have some time on electronic devices or some TV. Seven weeks of non stop battles would drive us all crazy.

8. Take help and let your children go to friends houses.
If you have other children in addition to your special needs child and they are old enough to do so, let them have some independence. Children, like adults need social interaction. There is nothing wrong in letting friends have your kids for a short while or letting a family member take one out for the day. The holidays are long so take respite when you can. I fought hard to get my son a few days in a play club for children with additional needs. He needed the break and so did we. I missed him dearly when he was gone but we all benefitted from a few hours apart. If someone can give you a night away from the kids don’t let them change their minds. If you have a partner try and take turns if possible. If you are offered care packages, kids clubs or such like use them as much as you can. You are not a bad parent for needing to be without your children. I still struggle with this but I am slowly getting there.

9. Never be ashamed or embarrassed about taking your children out.
My skin is getting thicker this holiday. I hear comments made about my children all the time, from adults and from other children. The more we are out in public and the more other people are out the more obvious it is how different my children are. It breaks my heart how isolated parents of special needs children feel, especially during the summer months. They feel they can not invite other children around to play, or feel trapped in the house because of their child’s needs or feel excluded. My children have as much right to play as other children. Whatever my children’s difficulties they are still children who want to run around a park, be pushed in swings or go on trains. This summer I have taken them more places than ever before even though their difficulties are more obvious. They need to experience more in life and the world needs to see more children like mine to break down ignorance. Yes, people will be cruel but smile, laugh and perhaps pass ancard explaining your child’s condition. They might not change their views but you would be amazed how much more love there is out there than hate.

10. Keep doing what works.
My son is addicted to you tube videos of life doors opening and closing. If it keeps him occupied and happy then I am happy for him to have some time watching them. He uses photographs from the iPad to communicate his needs in a similar way to how he uses photographs at school. If it works in school then I am keeping that up at home. It keeps things consistent and it allows me to know what he wants, at least some of the time. Likewise we are using the ‘first/then’ strategy to get him to do things he finds more challenging. First shoes on then out in the garden is a good example. For my daughter we found allowing her to eat away from her brother (whose table manners would put anyone off eating) has helped her eating. Likewise at times we use TV and dvd’s to allow us to put a washing on or cook a meal. If it works for you, do it!

Seven weeks is a long time to live off very little sleep, entertain two children and meet their needs at the same time. But half way through we are surviving and having fun doing the strangest of things, like changing beds and tipping out water. It’s about survival. It’s about keeping your sanity. But it is also about enjoying your children whatever their difficulties and challenges. I would love to hear your top tips for surviving the holidays with your special children too.

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