Sometimes a simple yes or no is enough

imageMy son doesn’t speak. But ever single day I speak to him. And I hope.
I tell him what we are doing, where we are going and who we will meet. He may have difficulties communicating but his understanding is improving all the time.
He is 7 and about 7 months ago he developed a very precious skill of being able to shake his head to communicate ‘no’. It was a moment of breakthrough. Prior to this we had screaming which could mean anything from yes, no or leave me alone. You could take you pick but if you were wrong the screaming just intensified.

He was so frustrated. And so was I.

Sometimes we just need a simple yes or no answer. That is often just enough.

I have mastered the art of understanding my precious son. I have had the privilege of seven years of learning his ways, his body language and his expressions. I can see his tears before the first drop falls from his eyes and I know what will make him laugh before any sound emits from his mouth. With patience we taught him to tap our hands to make a choice but we still could not get a consistent yes or no for simple questions. He could choose between two things. Would you like mashed potato or chips? Would you like to go to the park or swimming? But when faced with him fussing we could never get a clear answer to something as simple as would you like something to eat? Are you in pain?

Those were the times when just a simple yes or no would help us all so much.

This weekend as we went about our business I looked back at my children in the car and reminded them both we were on our way to the hairdressers to get their hair cuts. As I turned again to face the front I heard something that made me jump. I had just heard a voice I never ever dreamed I would ever hear! It was loud, unexpected and forceful. It was beautiful, perfect and simple. My son shouted at us! He shouted ‘no’! Thank God I wasn’t driving or we may have crashed. As I turned to look at my wonderful boy my heart missed a beat. I was smiling, yet crying. Rejoicing, yet weeping.

He just said NO! It was enough!

No doubt I should have not put him through the stress of that hair cut having clearly heard him voice his objection. But believe me when I say it badly needed done. I needed to see his stunning big brown eyes and he needed to have better vision without seeing nothing but his long brown locks. He hated it. But he survived.

Back home I longed to be able to share that moment with so many of you who follow his journey. So I tried to get him to say it again. I asked that poor boy so many questions willing him to prove he could do it again. He didn’t.

He actually went one better!

Dressed in only his pyjamas I asked him if he liked the rain. (He hates it!) and he made a sound. It was indistinguishable. I asked if he wanted his coat on (he hates his coat!) and again he made a noise but it was more of a grunt. I was determined! I asked him one final question: would you like to go out? And clear as anything he stood up, headed to the door and said ‘yeah’.

He said ‘yeah’!!!

Sometimes a simple yes or no is enough.

Do you know how long I have wanted to hear just yes or no? With Isaac that has been seven years. But with so many other things in life it has taken even longer. When I struggled with infertility for 9 years all I wanted was a yes or no answer to the question, would I have children? When I was told my children had autism I wanted a yes or no answer to questions like will they ever get a job?, will they live independently? When my boy was diagnosed with neurofibromatosis I needed a yes or no answer to will be need medical treatment and be ok? Now I want to ask professionals things like will my son ever be toilet trained? Will he ever be able to have a conversation with me? Will he ever have friends? Some days I want to ask God, are you listening?

I want to know so much. I long for so much. I am believing for so much.

But sometimes just a simple yes or no is enough to keep me going for a very long time.

When an angel captured love

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Do you believe that dreams can REALLY become true?

I do.

Many years ago I visited a friend’s house and my eyes were instantly captivated by a large family photograph mounted on their wall.

‘Wow’, I thought, ‘I would just love to have something as amazing as that of MY children one day.’

Fast forward twenty years and that dream has always remained with me. But the challenge of ever having that dream come true seemed to get slimmer every year. Yes I had the children, but taking an everyday picture of them both was a big challenge let alone getting them into a studio! Eye contact was an issue, understanding instructions another issue, posing impossible, and the bright lights and flashes a trigger for sensory overload and seizures. Beautiful professional photographs just one of the many things families like mine with ‘special’ children have to sacrifice at times.

But then I met an angel.

She read on my Facebook account how I was so emotional and grateful that one of my children’s schools had gone out of their way to allow my children to have a school family photograph taken. When your twins are separated by 14 miles in their education and one school does not even have school photographs taken you realise how this simple act could mean so much to me. What seems a ‘normal’ occurrence to most families became a real act of kindness to me.

Then an angel replied with seven simple words, ‘I can do one better. Call me.’

I spoke to the angel about my children. Did she understand how hard this could be? Would my children even get out the car on the day? Was she aware they have poor balance and co-ordination and would be unable to pose? Did she know my son could scream the entire time we were there? What would happen if my daughter would not smile due to her anxiety? I was as anxious as my children. Would my dream be about to become a reality? Would it be possible to capture love on a camera?

With the skill, patience and dedication you can only get from an angel my children not only coped but they SHONE!

I had a dream over 20 years ago and that dream has come true. I met an angel one day. She thought she was photographing my children but in actual fact she captured love in its purest form. She took two children who find life challenging and she found their beauty and personalities. She transformed everyday moments into priceless memories. She gave my son a voice when he has no ability to speak. She gave my daughter confidence that can not be measured. She took an everyday family and made us feel like we were royalty.

Do you believe dreams come true? My dream came true the day an angel captured love:

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Sometimes angels have names. This angel is called Amber Northfield Studio Boo.She took my dream and she made it come true. I can not thank her enough.

Now which one do I put on my wall?

25 confessions of a special needs mum


Have you ever done any of these?

Originally posted on faithmummy:


I had great plans for being a parent. My children would play board games with me at night, have friends around for tea, talk to me enthusiastically about their school day, and always say please and thank you.

Then I had children.

So there is more technology than board games, no friends around and no chit-chat about the school day but I still thought we would read stories before bed, go shopping for clothes, kick a ball around in the garden and bake cakes.

Then I had children with special needs.

Parenting is now intense, includes working with a large team of health and educational professionals, involves lots of trips to hospitals, means sending my child miles in a taxi to school and consists of huge amounts of paperwork. But it is still a huge amount of joy and love.

It is a different style of parenting. I have thought…

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He played with a toy!!

imageThe teachers had a training day and here I was with an entire day with just one of my children. I thought it would be lovely to take him to one of his favourite places to go to…the city centre! This little six year old boy just beams with delight at the very mention of going on a train. How could I resist that smile?

He had it all planned. He has me trained.This is the routine he always does and nothing changes in his wonderful world of classic autism. We go by train to one particular station, we get off and enjoy the escalators and then turn and go into an indoor shopping centre. From there we press every button for every lift, flapping wildly in delight at the thought the doors will open any minute and we visit every floor that every lift has before finally ending up at the food court where he has me knowing to purchase the same meal he always has and sits in the same seating area he always likes. He then spends an inordinate amount of time laughing and clapping at the hand dryers in the bathrooms before running with gusto to the most expensive, prestigious toy shop in town. imageHe knows exactly what he is looking for and I know exactly where he is headed. He bypasses without even a second glance the high prices teddy bears and Lego sets and remote control cars. He hurries past the jigsaws and dolls and the toy animals. He has one place in mind and one place only…he is heading for the lift!

I never have worked out quite what is so wonderful about this particular lift. After watching it for hours at a time you really would think I would have figured this out but I just can’t. But this lift gives me him so much pleasure, more than any toy in the entire shops ever could. He watches the numbers, gets excited at the doors opening and finds great amusement in just looking at it. The total highlight of his trip. In fact until today I wasn’t even sure if he even realised he was in a toy shop.

Can you imagine a six year old not realising they were in a toy shop? Can you imagine a six year old surrounded by more toys than Santa’s grotto and not begging their parents with those four words every parent usually dreads: image‘mummy can I have…’. It is just days until this boy’s seventh birthday and yet he has never once said those words. He has never asked for anything in a shop or even really played with toys. He has no concept of Lego or toy cars and has no ability to read a book. He can not kick a ball and has no understanding what dress up pretend play is. For almost seven years he has been caught up entirely in his own world of sensory play preferring a bowl of water, pressing a hand dryer to turn it on or endlessly watching lifts either in real life or on you tube.

So can you imagine my shock, my amazement, and my emotions when all of a sudden my almost seven year old turned away from the lift for the very first time and looked over at a display of toys! As if the looking wasn’t enough he casually wandered over and decided to ‘play’ with the toys!

Did you hear me…HE PLAYED WITH A TOY! This is epic! This is breakthrough! He suddenly woke to the fact there was a world besides lifts! And he touched a toy in a toy shop!

I scooped him up and kissed him and gave him a high five! I stood there and watched with tears in my eyes! Then without looking so much at a single price tag I grabbed every single toy he had touched and took my son and his array of newly found interests to the cash register!

imageOn the train home something just as amazing happened. It was like all his disabilities left my baby for a few hours and disappeared. It was beautiful. He put his hand inside the bag (he remembered those toys were in the bag!) and he handed me a bag of toy plastic food to open!!
I did not care if that whole carriage got covered in plastic bananas that bag was getting opened! He requested! HE WANTED TO PLAY.

It is so easy to become weary of playing with children. It is so hard to stay patient when they endlessly beg for toys in a toy shop. It is so easy to take speech and play for granted at any age.

Moments like this don’t come to me often. My son has no speech and he has never played with toys. So yes I spent money on plastic toys that were over priced. But you can’t put a price on the miracle I had this week. The miracle that is the simple fact:



So yes…I am doing it for ME!

imageIt’s the week before my twins have their seventh birthday. The invites are sent, the venue booked, cakes arranged and party bags all ready. This crazy mum has only gone and arranged a party for them!

And you know what? I am doing it all for ME!

There I said it.

I have invited children I want there, I have organised the cakes I want, and I have put what I want in the party bags.

That may sound very selfish. And it may well be. But for once I NEED this. I NEED my children to be part of some sort of ‘social norm’, I NEED them to feel ‘included’ and I NEED them to take part in society in some way.

So yes my son will not speak to a single other child. He probably won’t even recognise the children there or play with any other person. He won’t thank anyone for a present or open any cards and it is highly unlikely he will join in any activities. He has no concept of what a party or a birthday is even about now I think about it. So I can assure myself I am not going to all the effort of a party for HIS behalf. He would happily have spent a day watching lift doors opening or closing or watching hand dryers.

His sister on the other hand may like the concept of a party but the actual reality of it is a different matter. It will be hit or miss wether she speaks on the day, wether she will join in on her terms or not and she will certainly not be the life and soul of the party in any way. Social events are a bit of a nightmare for her and the noise and bustle of a busy room could sent her into sensory overload.

So why am I doing this to them?

Firstly they miss out on so much in life. They don’t ever get out to play with friends or get invited to a sleep over. They never get to go to brownies, or rainbows or boys brigade. My son has no friends (not that he even gets that concept) and my daughter has just one friend she talks to. Play dates just don’t happen around here. They are isolated and excluded from so much and for once I want them to be part of society. Is that such a bad thing?

Secondly, they may have zero social awareness but I do. All the other kids have a party on their birthday and I want my children to experience that too. I don’t want them to be ‘neuro typical’ or ‘normal’ but I also don’t want them to be bullied for being different either, especially when my daughter attends mainstream school. They may have no idea about peer pressure just now but I also want to protect them from cruel children who think nothing of bullying a child because they were the only one not to have a party. They are growing up in a non autistic world that sadly will not always be kind to them and sometimes I just want to protect them a bit. So I am doing it for ME so I feel they are just the same. Wether that is right or wrong is not up for debate. It is what I feel is right this year.

Thirdly, for just once, I want my children to be the centre of attention even if they don’t know it. They deserve their moment in the spotlight just as much as any other child. They rarely get to be called up at school for achievements and they never get awards outside school because they are unable to attend any after school activities. So while I am throwing the party for ME it is because I want people to notice my children, love on them and enjoy being with them. We just don’t get that much.

I just want to say I am not being cruel to my children. I have booked a centre for children with support needs. There will be a fabulous sensory room for my son which I know he loves. If it is too much for my daughter she can have as much time out as she needs. They won’t hate it all, they just won’t ‘conform’ to social norms on the day. And that is fine by me.

It is two hours of their day. Seven years Is worth celebrating. THEY are worth celebrating.

So we are having a party. And yes, I am doing it for ME. Is that really so bad?

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The effect on me…


Having children affects everyone. You become less focussed on yourself and more focussed on another. You sleep less, go out a lot less and consider it a great achievement to get a shower without interruption. But as time passes the children slowly become more independent and confident and you little by little gain more of yourself back again.

Well that is how it works when you have typical developing children anyway. But what if that very needy, all-consuming, up through the night, needing a huge amount of time stage never ends?

It is well documented that parents of very young children are vulnerable and prone to depression, mental illness, and can easily become socially isolated. Health professionals are trained to look out for this and regularly check for signs that all is not well as research has shown that sleep deprivation and coping with the high demands of a baby or young child take a huge toll on parents.

But it is expected that season will pass as the child grows.

But for some, like myself, that season just keeps going on. And not because I went on to have another child either. It is because almost seven years after having my babies I still face the high demands, the daily intimate care needs, the lack of sleep and the stress of milestones not being met. My children have disabilities and the pressure parents of very young babies face is still very much the same as what I face daily. I still change nappies, I wash my children and dress them, I am still singing nursery rhymes and trying to teach one to say ‘mama’ or ‘dada’, I am still cutting food up and putting socks on that have been pulled off.

And that long-term intensity has to have an effect on me.image

It takes it’s toll mentally in that some days I could just sit and cry. The doctor could give me tablets but the pain and stress would still be there. Some days the effort to get dressed and get out the house just seems too much. Except unlike parents of babies who don’t have to leave the house and can go back to bed, my children have school to get to even if one of them still only functions at the level of a 1-year-old.

It takes it’s toll socially in that going out at night is impossible. Besides the fact I have huge caring responsibilities and am permanently exhausted, baby sitters are a rarity for families like mine. Who has the physical ability to carry a large six-year-old out of a bath and dry him and dress him? Who has the emotional strength to deal with a little one having a panic attack because her mum has left the house? Even if I did find that special someone I have no motivation to get dressed up and make myself presentable when my body just craves sleep.

It takes it’s toll physically. The lifting and carrying of a baby can make a mum’s arms ache but when the ‘baby’ is two thirds of your height and a quarter of your weight how do you manage? Seeing to personal needs of a toddler who decides to crawl away is a challenge. Seeing to the personal needs of a child who can bite, punch, kick and climb is an altogether harder challenge. When they are long past the age of using a baby change in public and you have to find a way to meet those needs in public toilets not build for that purpose your body aches and bends in ways you never thought possible.

It takes it’s toll financially. Babies cost. I often hear parents complaining at the cost of essential items like prams, car seats, cots and nappies. Second hand is sometimes an option though. But not when you enter the ‘special needs’ market and you have to look for elastic waisted soft trousers for a child who can not dress himself yet aged 6. Or you have to think about paying for private therapies not available on the NHS. Then there is the cost of hospital trips, the fact the schools are miles away from home and special needs sensory toys come at a huge cost. And I still have to buy wipes, and bedding and nappies and other ‘baby’ items six years on.

It just all takes it’s toll on me.

The days of people ‘popping by’ to see if I am ok has long passed. The excitement of coming to see those new babies has long gone. The phone calls from friends to hear how the babies are stopped many years ago. Yet the reality of my life never changed much.

Yes, my children have changed me for the better, but full-time caring for a disabled child takes it’s toll.

Please, if you know someone who has a child with any sort of disability, think about and do what you can to help the child. But have a think what you could do to help mum or dad too. Believe me they need support more than you may ever realise.


Walking on bubble wrap or walking on egg shells?

imageHave you ever worked or lived somewhere were the mood of just one person affects everyone else? The boss is having a bad day so the atmosphere in the office is awful? The baby won’t stop crying and so everyone in the family is stressed?

I am a full-time parent carer and more and more I am realising the effect that one of my children can have on my entire family.

My beautiful son has classic autism and neurofibromatosis type 1. He is on the verge of turning seven-year-old and as yet is not speaking, or toilet trained, is dependent on me for all his care and very much lives in his own world.

Some days looking after him is like walking on bubble wrap. We are all cushioned by the fact he lives very much in his own world. People can call him anything but he doesn’t care. We can spend hours watching lifts or listening to the noise of hand dryers in bathrooms oblivious to the fact the world is passing us by. People neither hear us nor see us as we walk on our bubble wrap and only the tiniest of ‘pops’ make us heard in our community. We are isolated, invisible almost at times, but very secure in our own protected world of routine. Provided all is going according to the world of ”Isaac’ the world can be a happy, settled and loving place. He can be the happiest, flappiest, most content child in the world. There is no ‘mummy can I have’ or peer pressure for the latest trends. There is no social pressure to join in the best football team, or streams of birthday parties to go to. I have no costs for computer games as he can’t play them and he is as happy as a pig in mud surrounded simply by plastic food or a few baby books. Some days walking on bubble wrap is the most beautiful, most peaceful and wonderful place to be.

But other days he wakes up at hours only night shift workers ought to see; bedding, child and room covered in your worst nightmare that you smell before you see. Or you hear that high pitch scream for hours on end. The bubble wrap we once walked on once again replaced by a harder, more dangerous and very precarious road known to many as walking on egg shells.

This is the side of autism people don’t feel comfortable talking about. The days when nothing goes right and my child goes from one meltdown right into another. Like the morning this week he freaked out simply because our car was covered in condensation due to the colder weather. Or the fact his breakfast was not exactly what he wanted or expected. Or the taxi came too early, too late, or reversed into the driveway when he wasn’t watching! The days when everything we touch cracks those shells and impacts on everyone in the entire family. There are days, sometimes many on the trot, when we have to look out for the safety of his twin sister as he would bite, attack, throw things, pinch or push her without any prior warning. There are days when I wonder if my back, or hair, or glasses can cope with much more aggression and attacks from a child fast approaching my own height and weight.image

It isn’t easy to say but some days we are afraid for our safety and that of our other child. The older he gets the more egg shell days we seem to have. Reversing the car, stopping at traffic lights, road diversions, coming in the house from a different door, not going to lifts or hand dryers, not having mash potato for every meal, you tube layout changing, Google street maps not looking like he expects it too, no internet, presenters coming on the television instead of the programme….and so on. Endless broken egg shells and meltdowns we can not control.

I have never really been a fan of eggs and I detest walking on egg shells. School see the bubble wrap boy mostly, which is good. And sometimes we get to see that boy too.

It is the start of half term here and tomorrow I have no idea if I will wake to walking on bubble wrap or walking on eggs shells and it won’t be me deciding how my own days goes.

Autism: it affects entire families and the way they walk so much.