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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I just need some breathing space

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I keep looking him in the face while I make that phone call. Answering machine again. 20 minutes later I call again and yet again it is just the same. How many messages should I leave? How desperate should I sound? Is there a point at which you push too much for respite and give the impression you don’t love your child anymore?

School finished for the long summer holidays two and a half weeks ago. 18 days ago to be precise. I make out on social media we are having a wonderful time. For 7 of those days we were on holiday in a cottage in the middle of nowhere. I post photographs of my children playing with gran’s dog, going on trips by train, playing with toy trains and toy food and going on walks. We come back and I post about days out, more train trips and fun in the garden. I make out that everything is ok. Because I feel I need to. No parent wants to admit they are struggling. I want to enjoy having my children at home full time. I want to make memories and do lovely things together. This is my daughters last summer before starting full-time education and I want her to remember this summer. We have had lovely weather and there is so much we could do as a family.

But 18 days in and I can hardly keep my eyes open during the day. Two nights in a row of being up through the night with my daughter having continuous nose bleeds. The trying to do everything in silence to avoid waking her brother, but not succeeding. And every day Isaac being awake before 5am ( and awake during the night too) even when we have had a full on day of activities the day before. Everyday Isaac screaming for mashed potato and gravy at 6am and hitting me with the gravy jug because I said no. Then being hit on the face with the iPad because he has pressed on google but you have no idea what he wants to look at (google images is his current ‘thing’), only to have it thrown back at you because that wasn’t what he wanted. Everyday Isaac wanting pushed on a swing in the park for hours, the constant trying to escape every time the door is opened or unlocked, the constant spilling of any liquid he happens to see because he likes the sensory feeling of water, the continuous turning on of taps and flushing the toilet non stop, the endless screaming, the knocking things down to hear the noise all the time, the opening of the fridge and freezer and helping himself, the biting, self stimulating and banging on the table to demand more food yet again. The effect all of this is having on his sister, on my husband, and on me is showing. 18 days in and the cracks are starting to appear.

He needs the routine and stimulation of school. We need the break.

My mum is doing what she can to help but at almost 70 she isn’t able to lift Isaac or restrain him. And Isaac is the same in her house as he is at home. Nothing is secure. The dog’s water and food is tipped up onto the floor within seconds of his arrival. He is up at the table wanting food even when he has just been fed. He has the dogs toys tipped out and thrown around before we have even closed the front door. He is like a tornado that never ends. He has mastered how to open her back garden gate. And he finds all this hilarious.

We have to keep him occupied constantly. He can not play with toys, or sit for more than a minute or even watch TV. He walks over and breaks anything his sister is playing with. He wants to sit in a ball pool of toy food by seconds later he has the entire box of toy food strewn all over the living room floor. When he has a bath the bathroom floor gets as wet as he does. And he pours into his bath any cosmetics he can get his hands on. The taller he gets the more things he can reach. If his hands can’t open it he just chews it until it opens. He turns the taps on constantly. He won’t even stay still for a nappy change.

Before the holidays we were getting 3 hours respite a fortnight. It was like gold dust. It enabled me to get to church and hear a service, something I hadn’t done in 5 and a half years. I had time for a cup of tea and a brief chat with friends afterwards before having to pick the children up. I haven’t been in a church service since the last time they had respite. I miss that so much. So I keep calling.

We get so fed up getting messed around that finally one morning we put the children in the car and drive to the summer respite centre we were promised a place in. I feel a failure as I press that buzzer with tears in my eyes yet ears still hurting from the screaming my son is doing even at that exact time. I am having to phyically restrain him. He can see swings across the road. I ought to be taking him there not to some strange building he hasn’t been in before. And Naomi’s hands are out in front of her showing how scared and worried she is. Before she cries I pick her up and hold her. What sort of mother stands outside a centre on a warm summers day hoping to persuade strangers to look after my son? I feel sick but I know we have to do this.

They let us in. The children already inside are settled, happy and silent? I’m sure we have come to the wrong place. Apparently not. We register Isaac but hear how despite the fact we have a set of twins born just one minute apart, despite the fact they both have a diagnosis of autism, they are only able to take one of them; Isaac. I hope they didn’t see the relief on my face when they said he could come for two days every week for the next three weeks. 6 days, 5 hours each day of breathing space.

I hope that is enough to save my marriage. I hope it is enough to give my daughter some valuable time alone with us before she starts school. I hope they look after him.

My heart is broken that I have had to admit I am struggling. I keep telling myself he has to have one to one at all times at school even in a special needs school. I try to remind myself this is not a parenting fail but rather a child with severe and complex needs who still can not speak and isn’t toilet trained. My mind knows my whole family needs this breathing space even though my heart is broken at having to hand my son in to respite.

I love him so much. I just need some breathing space.

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Sometimes autism wins…

You can turn anything into a positive if you try hard enough. But however you look at it, somedays autism wins.

For example it was so easy to pack my sons clothes for a holiday as all he will wear is his red school jumpers. I can even joke that he is saving me money buying him holiday clothes. I laugh about the fact he is slowly turning those jumpers into pull overs as he eats his way up the sleeves. But that joking hides the sorrow in my heart that every time I see him in that school jumper I realise that once again autism has won. If you were scoring the days then before anyone has even had breakfast in my house it is clear that autism is on the winning side. I have to choose my battles. And right now this one is just beating me. So I turn it into a positive. Autism might win the battle, but one day I might win the war. And if I can get him to do more things, be a little more flexible during the day, or wait without screaming then autism can win the red jumper for another day.

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You get used to pushing a stroller around and you actually forget sometimes that the ‘baby’ is actually almost 6, until someone looks at you like you have horns in your head. Hey, I say to people, having a buggy makes carrying bags much easier as you can hook them over the handle bars. Pushing a buggy gives you something to lean on when you are tired, and stops you having to drag a child along kicking and screaming. I have to dwell on the positive. Because the fact that this week I took both children on a train ride into a city centre and had to put both my five year olds into buggies in order to achieve anything could really get me down. It is another sign that this week autism won. It was the only way my family could go anywhere safely. It was the only way the children could cope with the noises, crowds, walking distance and strange smells. It made boarding and alighting the trains very hard, it made getting over the bridge to the other side to get the car like a mountaineering expedition, and it filled the car boot before we even tried to get a bag in. But although autism won, it was actually a win for us as we managed a day trip out and we all had a good day.

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So we tried to go out again. This time we tried a farm. One child loved it. The other lasted a few minutes before having to be carried back to the car. Autism prevented me even getting pics of the child who was loving it.

We moved on to an indoor adventure centre. One loved the toy shop and wanted something from the cafe. The other was so preoccupied with the lift and automatic doors that one parent missed out yet again. Sometimes autism wins…

We’d packed a picnic so we found a lovely park by a castle to sit on a bench and eat. One was so excited. The other could see a macdonalds at the bottom of the hill and that was the end of that. Why would anyone eat cold sandwiches and fruit when there are hot fries and nuggets at the bottom of the hill? It seems at times like this we are fast losing the war. So many battles…which ones to fight, which ones do we just ride out?

Never judge a war based only on what you see at first glance. It might seem like autism is winning but in actual fact we are making progress.

This week the children have both thrown toys for granny’s dog. They have played with and interacted with something other than ipads and trains.

We have had fish and chips outside watching ducks at a pond.

We have been for walks and seen sheep and cows as a family.

We have even managed to eat out at a buffet restaurant.

One of the children ate chips for the very first time.

We are not allowing autism to keep us at home during the summer holidays.

Autism, you might think you are winning because the children are still in nappies. You might think you are winning because one still can’t talk. You might think you are winning when we abandon plans and try something else. You might think you have won the war because we let the boy wear a red jumper everyday.

But don’t be fooled autism…

Sometimes autism wins…

And sometimes we laugh and smile and have fun like it never even exists. It’s all about being in it for the long hall. The war isn’t over yet…and the summer holidays have only been going for a week!

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What holidays??

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This afternoon my children start the long summer break from education. My daughter will leave her nursery years behind and begin her formal education in August and my son will have completed his first year at school and will say goodbye to his teacher for the last time as she moves to another school. Except, unlike most children, neither of them have any idea what is going on.

For ten months Isaac’s life has been consistent. He has spent 6 hours a day at school wearing his beloved red jumper and being with the same four other children and staff. He has grasped the routine of swimming, sensory room visits, school dinners and outside playtime. He has become accustomed to going on a taxi journey every morning. He has no concept of holidays at all so seven weeks without this consistency and routine will really confuse him. He will still insist on wearing his red school jumper, because that is what he always does.

He might be on holiday from school but he won’t get a holiday from his autism, or his learning difficulties, or his neurofibromatosis, or his developmental delay. And we won’t get a holiday from them either.

By the time he has adjusted to any new routine of being at home, going trips out, or eating lunch at home, it will be time to start preparing him for his return to school.

While his teacher, speech therapist, support workers, and even his respite carers all get a summer break, we, his parents, have to become all of the above and more in order to keep his development on track and continue to encourage his communication. Except, unlike the professions, we don’t get a full nights sleep, or a wage, or have access to wonderful resources. We get to do it without training, support or a break. We do it out of love.

For three years now all Naomi has known is nursery life. We have read books about school, she has had a few visits, she has seen photos of what her brother has done at school, and we have her new uniform and school bag ready. But still she asked yesterday morning what would she do when she no longer goes to nursery! Because until the reality of starting school happens she can not ‘imagine’ herself doing anything different. Like all 5 year olds she lives in the moment. Seven weeks away is like years away to her. As she hears all the staff saying goodbye, as she hands them presents to say thanks, as she empties out her tray of all her art work and letters, she still hasn’t fully understood that she won’t be back there again. As adults it can be hard to think what any new routine will look like and it can take time to adapt to changes. It will seem strange for me not to hang her coat up on the peg we have used for years now, to put her slippers in her bag for the last time or to drive out the car park knowing I won’t be there again. I find it hard to imagine my tiny five-year old will be wearing a shirt and tie or school pinafore in just a few months time. This change is big for me, so it is huge for my daughter.

So we say goodby to her key worker, her learning support teacher, her speech therapist, her assistant Head and Head teacher. I look at their faces and realise just how many meetings we have attended together over the years, how many times we have discussed my daughters difficulties, how many strategies we have worked on together and how many forms we have all filled in. They now get a holiday from all this. And while we may get a break from meetings and discussions with all these professions, and many others beside, we will still have to work on communication strategies, self help skills, independence, gross motor development and toilet training throughout the summer. Once again we will be working on all these without training, support, sleep or access to the resources they have.

Naomi’s challenges won’t disappear for the summer. In actual fact they may become more pronounced as she struggles with the lack of structure, becomes more social isolated due to not being around her peers and becomes even more attached to me and therefore more anxious when she is apart from me. While she will be delighted to not be forced into social situations or have to join in with others, seven weeks of being allowed to play on her own, being restricted by the needs of her brother, never being away from me and not being challenged in her communication with others will have a big effect on her confidence socially and in her general development.

While I will do my utmost to keep my children entertained, stimulated and happy throughout the summer I also need to keep working on their communication and social skills and their physical and mental development. And we still have hospital and clinic visits throughout as well. Except now we have to take two children along to them all.

I know all the professional who have worked with my children this year deserve a break. I know it is good for my children to have a rest from formal education too. But while they all begin that break at 1pm today the batons gets passed to me and my husband.

Seven weeks of no speech therapy support; no breaks while the children are at school and nursery to get on with paperwork, housework or shopping; no respite; no school meals; no access to the support and resources his school has to offer; and no extra funding to provide any extra support the children need.

Holidays? What holidays??

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When you watch your child struggling

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It’s the end of term here in Scotland which traditionally means schools and nurseries relax the rules a little bit, organise sports days and school trips and have end of year awards ceremonies and graduations. Parents love them, teachers spend more time decorating rooms, organising teams and taking photographs of children than they do teaching, and social media fills up with post after post of proud parents posting of their child’s achievements. But for some children, my own two included, all these changes bring stress, anxiety and confusion.

My children don’t excel in sports, or academics. School trips makes their anxiety levels soar. And the relaxing of the rules is so confusing for them both.

So while parent after parent takes pride in their child winning races, telling them all the details of their school trip or enjoying all the wonders of this years school fair, I rejoice in the simple fact of my child taking part.

Isaac had his first ever sports day at his special needs school last week. I knew he had been preparing for it when his legs had even more bruises than normal on them and he came home upset. They sent me home a photograph of his assistant helping him bend down to pick up something in a race. I have no idea what else when on that day. But I do know he took part in some of it. And that makes me incredibly proud. He has no concept of sport, or competing, or what he was supposed to do. He would have been much happier running around the hall flapping in circles. But with constant support he took part. It was a struggle for him and his teacher. But they tried. And that was worth getting a gold medal in my book!

He had his first ever school trip this week. His class of five children went to the safari park. But his taxi arrived that morning and it was a different colour, and his beloved food catalogue wasn’t there as it was in the other car. No catalogue, wrong car and the added confusion of a ‘different’ day were all too much and it took thee adults to carry him into the taxi kicking and screaming. I should have stood outside the school gates waving him away on a bus like every other parent of a child in mainstream school. Instead I was still hearing his crying as the taxi pulled away from our street. My heart was broken seeing him struggle so much. And knowing he can not come home and share with me the joys and excitement of his day because he can not speak. He came home with three photographs in his bag. The tears of pride I had when he chose to sit on my knee and point to those pictures. That was worth the struggle to get him into that taxi.

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Naomi had her first sports day at nursery last week too. As all the other children independently came out of the class and down the three stairs into the garden she had to be supported by a member of staff. As all the others formed a line and filed into rows of seats she just stood there. She had no idea of the social ‘rules’ going on so could not follow them. She had to be seated on the last seat away from her friends. As the races began her face went paler and paler. As she watched children run across a small section of garden, she looked so lost and was huddled into the rows in front by staff and pupils alike like a little lost sheep just following the crowd. When it came to her race she never moved until the word ‘go’ was said and she ran as fact her little legs could go, which isn’t very fast at all. The others finished and the next group were all lined up but she wasn’t even at the finish line yet. The tears in my eyes were a mixture of sadness, pride and overwhelming love all rolled into one. The staff and parents cheered her on like she was one of their own. And finally she made it. The others full of energy while she was exhausted from just one short race. With difficulty and support she completed every race in a similar manner! Last by a long way every time. Thankfully there was no sack race or hurdles as she still can’t jump. As all the children received medals and had pictures taken there was a massive round of applause for my daughter as she stepped forward to get hers. We had all watched her struggle. And we all celebrated her victory.

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This week she struggled again. This time it was the nursery graduation. The hat and coat annoyed her so much. The noise of all the children and adults was so loud for her. The heat in the room made her feel sick. But she sang, she watched videos of everyone’s time in nursery, and she clapped for the other children receiving their certificates and school ties. All the while her face was getting paler and her hands were moving more in front of her showing her anxiety. As all the others jumped excitedly onto the made up stage she needed two members of staff to support her up. She stood at the top terrified. But she did it. I can not begin to tell you how proud I was of her. At that moment it didn’t matter one bit that she doesn’t speak there, or that she is still wearing a nappy, or that she has autism. At that moment in time I was so proud of her for getting to that point, for overcoming her struggles and taking part.

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Tomorrow we have Isaac’s end of term celebration at his school. I know he will struggle. But I know with support he will get through it.

It is hard to watch your child struggle. But it is even harder for them. Sometimes courage can be found in children who are trying hard to take part despite everything.

They say it is the taking part that counts. And even though Naomi has had nose bleeds, fainted,and cried with it all this week and Isaac has bit himself, screamed and gone deeper into his own world as a result of struggling with the changes end of term has entailed, they have both made me so proud.

I watched my children struggle. But I watched them overcome too. It’s been a year of struggles but also a year of breakthrough.
Life really is about taking part. Because for many children, like mine, that is an achievement all on it’s own.

I walked beside you

I recently had the privilege of going on a walk with my son’s school. He attends a school for children with severe and complex needs. There was nearly as many adults on the walk as there were children. There were wheelchairs, crutches, walkers and a high percentage of children who have no speech. It was truly one of the most beautiful walks I have had the honour of being on.
I was holding my own son’s hand and here is how our walk went:

I walked beside you on the school trip one day
Holding your hand all of the way
You don’t see danger in the way that I do
You don’t know the way but trust that I do
I see the hedges, you pull the thorns
I watch for traffic, you laugh at horns.
I point out the library, you yearn for the doors
You pull to get in there and drop to all fours
The walk has now halted, a child is down
The teacher shows you photos and we keep walking through town

I walked beside you on the school trip one day
You held onto my hand for all of the way
You don’t see life in the way that I do
The innocence of childhood embodied in you
I see the challenges, you just see play
I worry for the future, you just live for the day
I point out the park, you just see the stream
As I pull you away you just let out a scream
Teachers come running with photos in hand
They knew this might happen, so they had it all planned

I walked beside you on the school trip one day
You taught me so much as we went on our way
Your mind is years younger than the body it uses
You keep falling over, legs covered in bruises
But you keep getting up and you keep going on
You may not have words but you sing your own song
You laugh at the birds and you flap at a fence
The joy that these bring you is pure and immense
I need more of your joy, I need more of your zest
We could walk so much further, but today let us rest.

I walked beside you like I always do
You needing me and me needing you.

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