Help me do it in private please

I did it in the back of a car…it wasn’t very comfortable!
I did it on someone else’s bed…I hope they never find out!
I did it once behind some bushes…it was not my finest moment!
I regularly do it at speed for fear of being caught…
I am always prepared for it, he wants it far more than I do
But I always, always do it out of love.

Have I got your attention now?

Of course I am referring to changing my disabled son’s nappy!

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I live in a country where disability is recognised. There are government benefits and laws protecting and supporting both children and adults with disabilities. We have disabled access rights, laws regarding discrimination and an education system that should in theory meet the needs of all children.

So why do I still find myself in this twenty first century in a developing country changing my seven year old child in the back of my car or even behind a bush? That is a very good question!

Most buildings now have ramp access where possible and public buildings ought to have accessible toilets. My son is a wheelchair user but he can also walk. His disability is not openly visible. He is unable to speak but you would not know that by looking at him. He is two thirds of my height and wearing incontinence products for a small adult. It is very challenging to clean and change him now while he is standing upright. But still the majority of disabled toilets have no facilities to lie such a child on.

Disabled toilets are mostly designed for wheelchair users who are able to access a standard toilet seat with small adaptations such as handles and pull string flushes. Many are also used as baby changing facilities therefore from a business perspective doubling the use of the room. The only advantage this gives me is that there MAY be a proper nappy disposal bin, but there may not be.

I am long past the stage of being able to lie my son on a pull out table. He outgrew that before his second birthday. He is now at an age and height where questions are asked if I even take him into the ladies with me. Though I struggle to often close the door on some ladies cubicles never mind trying to fit me, a large changing bag, and my seven year old son in too! It is most unpleasant for everyone for me to do that.

I have a key (and rightly so) for disabled toilets. Most times this helps in being able to at least get any toilet open. Why should I have to take my child who is perhaps smelling and screaming to a member of staff to ask to access what should be a public right? Why should he be treated any different to any able bodied person?

I know there is a lot of campaigns out just now to bring accessible toilets up to a certain standard and have better access to these facilities. This is fantastic! But we also need to educate. I have had stares, rude names and inappropriate questions from strangers just for using a toilet! My son may not understand but what if he did? His disability is no-one else’s business. He may need me to support his needs for many years to come and if so that is what I will do. That could potentially mean changing someone taller than me. Does that matter? I suppose people just assume that the sign shows a wheelchair and therefore I should only take him in in the days he is in his chair. That is a bit like assuming you can only go to the toilet on the days you have a red coat on! Pretty crazy really.

I changed my son once again today in the back of my car. It was not pleasant and could so easily have been avoided. A simple bench within the disabled toilets would help so much. I refuse to lie my seven year old on a dirty toilet floor. He may not look disabled but I can assure you he very much is. And he has a right to dignity. And so do I.

I would far rather see to his private needs in private. A simple bench could make that possible.

In fact a simple bench would save many others from doing it in the back of cars, in other people’s beds, behind bushes and many other places besides. I want my son to be respected and be given dignity. Is that really such a big thing to ask?

I need to change my disabled son. Help me do it in private please.

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The less they get, the happier they are

imageIt is the day after Christmas Day and if social media were to be believed my children have been pretty hard done by. Except they haven’t.

By society’s standard in the country I live in we are considered to have little income. But in actual fact we are very rich indeed.

This Christmas my children received less than many others. Much of what they had yesterday was second hard or given by family. Yet this truly has been our best Christmas ever.

Both of my beautiful twins have a developmental neurological condition called autism. Despite being seven year old my son is unable to speak and has significant communication difficulties. He can not ask or show me what he would like as a gift at any time of year and only plays on rare occasions with toys suitable for infants. My daughter has zero concept of peer pressure or current trends and instead likes to re-enact things she has seen on TV or a DVD. She likes simple, small toys that she can line up.

So I decided this year to give them the Christmas THEY wanted. I was brought up as one of four children with extended family of uncles, aunts and grandparents and a minimum of twelve people at the table for Christmas dinner every year. I loved it! My children would hate this!

So we socialised less. We had less people here; in fact we had no-one around on Christmas Day at all and we all stayed home.

We ate less. The kids had no selection boxes or sweets at all and instead had some fish bites and chips for lunch and sausages and mash with baked beans for dinner later on. We never even had pudding. Not because we could not afford it but because no-one was bothered.

We were at peace. We were content. The less we got and did, the happier we all were.

imageIsaac loved a simple book. And a toy toaster that only just cost marginally more then the wrapping paper I used to wrap it in! A family member bought him a plastic jar of magnetic letters. It brought him huge joy and despite being described by professionals as ‘own agenda’ and ‘in his own world’, he gave me eye contact and smiles and vocalised to get me to tell him the letters and numbers as he showed me them. An inexpensive item bringing priceless moments of love, communication, connection and education.

imageNaomi had a new DVD and some small characters. But one of the things she loved most was a small game of bowling which she used her new characters to play with time and time again. Turn taking, fine motor control, imagination and maths skills all coming into play in a toy that cost just a few pounds. And together we spent some beautiful time together playing a game of dominoes that cost half the price of a roll of sticky tape bought to wrap the gifts in! Gran bought her a tub of Lego and she helped me make a pencil. That pencil became a magic pencil that wrote letters and passwords all over the house.

A few days before Christmas I came back from a meeting at my sons school to a note through my door. All it said was there was a parcel in the bin for me. When I went to retrieve it I discovered two bin bags of wrapped gifts for my children.image I have no idea who did this but it was such a beautiful act. One box was full of second hand transformer type toys. My son has fiddled with these and my daughter is fascinated by the moving parts. Another gift was a craft set my daughter loves and another was some children’s make up which Naomi says will make her even more beautiful. (I don’t believe that is possible!)

It has been a very simple Christmas, by choice rather than need. The children got less but in doing so we ALL got more. More in the way of quality time with them, more peace, more calmness and more appreciation of the things we so often take for granted. For the first time they were not overwhelmed or pressured and neither were we.

I love Christmas; I always have done. But this year my children taught me the true meaning of it all. Baby Jesus was born in the most humble and basic of circumstances and in our humble Christmas this year we found a closeness and a magic we have not had before. My children showed me that the less they get, the happier they are.

Well apart from love that is! You can never ever have too much love!

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My Christmas miracles

imageI believe in miracles.

But the reality and daily grind of life can shatter that belief until it feels like miracles only happen to others. Then I witness a moment; a tiny fraction of time, and that belief is restored once again. Those moments often happen when we least expect it and in the normal everyday occurrences, so we need to be watching and waiting and believing. Sadly too often I am overwhelmed, exhausted and so busy I almost miss those moments of beauty right in front of my eyes.

This last week though I have noticed two miracles with my son. Nothing huge like starting to speak, or new physical skills like kicking a ball or jumping (stuff other seven year olds do without even thinking!) or even independence skills like showering himself.

No to most parents of seven year olds my miracles would seem trivial indeed; unmentionable, so run of the mill they would be taken for granted.

But one thing that happens when you parent a child with additional needs is that you learn NEVER to take anything for granted!

I had taken the children to a Christmas party. The fact we even got inside the door could be classed by some as a miracle. The fact my son was no longer wearing his red school jumper this year (he wore nothing but his school jumper for two years everyday) could easily be noted as a miracle. In many ways that was something I never thought I would ever see. The fact he climbed onto the bouncy castle and enjoyed the vibrations while everyone else jumped was amazing. These are all massive achievements for my son. He never joined in dancing or games and wandered around very much still in his own little world. But that was ok.

He ate when the food was offered and he never had a meltdown or attacked anyone and he was smiling and happy. I could end here as these are all massive achievements for us.

The Santa came.

He has no idea who Santa is. He has no concept of Christmas. So I just held him on my knee while the other children got excited and waited eagerly for Santa to give them a gift. He moaned and squirmed a little with being held but seemed to watch in his own little way. As an adult I knew at some point his name would be called. But how would he know that?

“Isaac” said Father Christmas with his usual smile and excitement.

I was just about to take my sons hand and drag him up. But before I could move he stood, he looked right at that man in red and he walked right up to him, took his gift and brought it right back for me to open!

imageHe responded to his name! He took a present from Santa! He watched others and figured out what was expected!! I am so overcome with pride about those things.

Not that long ago he had no idea what his name was. He would not go anywhere he had not already been to before. He never watched other children. He would not have had any idea what a present was, especially if it was wrapped.

But this weekend I had my Christmas miracle.

And later this week I have another one too. He is only going to be Joseph in his school nativity play! He is part of it! He has a role! And to whatever degree he understands he will be acting out that role. It is what seven year olds do. But something I never dreamed I would see.

In case you did not know, my son has classic autism. He is still wearing nappies and unable to speak. He has Neurofibromatosis, a genetic condition that can cause learning difficulties and delay. He can not read or write or count. He can not dress himself. He is very much in his own world. I worry what the future holds for him, and the many hundreds of others like him in this world.

But miracles happen all the time. And this Christmas they have happened to me.

Keep looking and one may just happen to you too.

All I want for Christmas is to hear his voice

Reblogging this as I have appeared on The Mighty. 12 months later and he has still not spoken. Having a non verbal child is hard all year but somehow it seems even harder at Christmas.

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imageAnd so another December has begun and Christmas is almost upon us once again. There is something so special about this time of year with the fairy lights, and Christmas carols, children’s nativity plays and the joy of giving. The awe of little children’s faces as they open up a gift that was so wanted, wether it be from Santa or family. That is what parents long for and why families will go to extreme lengths to see a smile on a child’s face.

But what if you have a child who can’t ask for anything? What if you have no idea what they would like because they struggle so much to communicate and play with so little?

Six years ago I gave birth to a beautiful baby boy. An I am still waiting to hear him speak.

I want him to argue with me. Shout at me ‘no’ and…

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When someone says, “It’s only autism”

imageTwice now I have heard the paediatrician confirm ‘Your child has autism’.

Have you any idea what that feels like?

Hundreds of times I have found myself telling someone else that one or both my children have autism.

The responses are interesting. They range from shock to sympathy, from confusion to comfort, from understanding to utter ignorance.

A few times people have told me it isn’t that bad, it is ‘only autism’.

Before I go any further I need to tell you I am so grateful for my children. I adore them. My son attends a school for children with severe and complex needs and he mixes every day with children who have life limiting and severe medical and developmental needs. I am involved with a charity that supports children with Neurofibromatosis and know personally of children with brain tumours, undergoing intensive chemotherapy and struggling with pain. Every time I take my children for hospital appointments I count myself blessed. I know there are thousands, even millions of families in the world worse off than mine.

The biggest issue my children both face is autism. But it isn’t ‘only autism’.

When you say ‘it’s only autism’ it can sound like it is something minor, insignificant, that it has little to no effect on them. That could not be further from the truth. According to the National Autistic Society autism is ‘a life long developmental disability…’ In other words my children with autism will one day be adults with autism. They will always have it. When you say ‘only’ I think of a cold or a sickness bug that is minor, time limited and will leave no major problems. My children’s autism is none of those.

Autism affects how they speak. One of my children has no speech at all aged 7. He may or may not be able to speak as an adult. What is ‘only’ about that? I find that very significant and life limiting for him and us. Many children and adults with autism have echolalia, selective mutism or difficulties being understood. These are all significant speech and language issues that need intensive support.

Autism affects what they wear. They both have huge sensory issues and rigidness. My daughter refuses to remove her school fleece even on the warmest of days and my son went two years only wearing his school jumper every single day. Some children with autism strip off even in public, others are unable to wear shoes and many have issues with everyday items like socks. It may seem trivial in comparison with what others struggle with but dealing with this daily is exhausting and debilitating for so many.

Autism affects what they eat. I have one child with autism who has no concept of edible and non edible at aged 7. He would eat plastic as easily as mashed potato! I have another who refuses food due to severe anxiety. Millions of children with autism have limited diets or severe eating issues. The stress parents face at every mealtime is anything but ‘only’.

Autism affects their play and social skills. My son is locked in his own world. He has little awareness of other children and with no language he is unable to really interact with others. My daughter has no natural desire to talk to other children other than one friend and last year preferred talking to flowers to talking to children. She likes rules and sadly people and social events don’t always comply with rules and she gets confused. My children are vulnerable and always will be. That is scary.

Autism affects how they learn. My son has significant learning disabilities. This is not uncommon with autism. My daughter learns best from visual stimulation which is not always how things are taught in mainstream school. They need patience, understanding, repetition and consistency. So many things take longer. They won’t ‘grow out it’, ‘be fine’ or ‘snap out it’. My son won’t suddenly learn to read or write or talk. It takes time and intervention and therapy. None of that is ‘only’.

I could go on and say how it affects the way they understand and think. It affects how they interpret emotions. It affects their sleep and self esteem. It affects their mental health. It affects their ability to face new situations and cope with change.

And it affects me as their mum.

Yes there is so many things worse than autism. I would never ever argue with that. But autism is still a serious condition for so many, my children included.

It may be ‘only autism’ to you, but it is far more to me, my children and thousands of others too.