Is your other kid normal?

image

‘Is your other kid normal?’

How would you feel if someone asked you that?

Before I let you know how I reacted to that I want to start by looking at the dictionary definition of ‘normal’.

According to The Oxford English Dictionary the word ‘normal’ means: conforming to a standard; usual, typical, or expected.

In other words this stranger was implying my son is not standard, or usual, or what was expected. He does not fit societies stereotypical idea of a seven year old. He is different. He is unique. To the stranger he stood out as exceptional and out of the ordinary.

Do you know how proud that makes me of my son?

I love that he is different. I love that he does things in his own way, at his own time and he has no concept of following the crowd. I delight in the ways he shows excitement by flapping, making high pitched noises and spinning. I smile when I watch him making his own delicacies like pizza with custard and yoghurt with mashed potato. I find it refreshing how he would rather watch lift doors than spend money on toys. I dance around with him in glee at watching yet another person use the hand dryers in the public bathrooms.

He is funny. He is loveable. He is energetic. He gets bored clothes shopping and thinks he knows better than me at times. Those are all ‘normal’ things that seven year old boys do!

He has brown hair, Hazel eyes and a love of technology. He is average height and weight for his age and even his shoe size is right on target!

So why would a stranger ask me if my other kid was normal?

She looked at my sons disability. She looked at the fact he is unable to speak. She looked at his poor balance, his different mannerisms and noises and she saw him as less, not conforming and not typical. Her question implied I should be sad for having such a unique child and craving a child without any such challenges. Maybe I should be sad I have to see to his every need at seven? Maybe I should be broken hearted he is not yet potty trained and not speaking?

I refuse to judge this stranger. Why? Well a part of me used to be there. My heart ached for the things my son could not do. My body ached pushing him around in a chair for all the years he could not walk. My ears would love to hear his voice.

Now I see my son differently. I see him as beautiful. I see him as wonderful.

He IS normal. His sister is normal too.

Normal according to the dictionary is conforming to a standard. If you see the standard as being human then there really is no such thing as not being normal.

So do you want to know how I replied?

I simply smiled and said softly ‘Yes. I am blessed with two amazing children. Thanks!’

image

 

A moment of beauty at build-a-bear

Kids are so full of surprises! Just weeks after Christmas and the usual delude of new toys and games and what was my daughter wanting to play with? A teddy bear she has had for years! Now reincarnated with a new name and involved in all sorts of fresh imaginary play; I knew what was coming next…

Mum, I can’t find Ellie’s clothes?

Imagine my confusion! Who or what is Ellie? Followed by the panic of realising I not only have no idea where the once-buried-under-the-bed-in-a-box toy appeared from but how did she even remember it had clothes? And she seriously expects me to just pull out this last seen in 2013 teddies coat and boots? What? Goodness, this mamma can barely remember the day of the week let alone anything else! We dug in the we-have-no-idea-where-else-to-put-this-stuff box to no avail and alas I began to wonder if these ‘suddenly in demand’ items she can not live without now could have ‘accidentally’ jumped into my car boot in the pre-Christmas clear out. Oh what an awful parent I am! I shall pre-book my daughter to that counsellor she is sure to need when older!

And sometimes, for our own sanity, we make a promise we know our bank account will live to regret!

Ok, this weekend we shall take Elizabeth, Ellie, ..whoever, to the bear shop and buy her an outfit. Ok?

And breathe!

Well until today when that eager eyed baby woke and ran into my bed to announce today was the day her bear was getting new clothes! That’s it, NOTHING is ever getting thrown out again, you hear me!

So we excitedly (well reluctantly on my part!) got prepared to go. And this is when it gets complicated! As well as my way too attentive daughter I also have the honour of being mum to my son who has complex needs. How in the name of whoever am I going to get this boy of mine into build-a-bear? It’s not like you can buy a bear and get a free burger now? And the last time I checked they had no lift or hand dryer? So that’ll be a ‘no chance mum’ as per!

Flip! Could Elizabeth, Emily, sorry Ellie not become a naturist for a while until you find some other old toy? That look…well if you are a parent you know what I am referring to…it said it all!

So let’s just get this over with!

You are kidding me? Really?

My son, aged seven, who has never in his life touched a teddy, who has yet to speak, who has no idea about imaginative play…is standing over a basket of teddy ‘skins’ and has ‘chosen’ one he wants! STOP!

He is in the shop. He is not screaming. He has not wrecked the entire place.

Now THAT was worth coming!

Now how do I explain this ‘teddy’ needs stuffed by a loud, spinning machine full of white ‘stuff’? He doesn’t know what a teddy is? Or maybe he does?

Well he waited, and he ‘chose’ an outfit, unsurprisingly one that closely resembled his own beloved school uniform (he doesn’t care it was a skirt) and a red bag to match. Meanwhile I dreaded to imagine what his sister had seen! Have you seen the prices of these clothes? I pay less for my own clothes and I can assure you they are a whole lot bigger!

She settled on…the exact same uniform, a pair of pyjamas…and the added ‘accessory’ of…a wheelchair! She announced in front of the entire shop that her bear just wanted to be like her brother. And how do you argue with that?

Ok, mr build a bear, your prices are crazy, your appeal far too great, your choice better than the average high street shop for ‘real’ people, and I never want to visit for a good while until my bank account recovers…

But I have to admit, you gave me a moment of beauty today. I even hasten to say a miracle. The boy who has no teddies now has one. And he hasn’t let it go since! And you ‘normalised’ using a wheelchair for a child who sometimes struggles at how different her brother is.

So cheers! I owe you one!

P.s, a coffee shop to give me a moment to recover may not be a bad thing! I’ll leave that with you 🙂

image

image

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.

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.

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.

Finding beauty in the simple

Peace can often best be found in moments of simplicity.

The last few months have been anything but calm in my family with illness, upset and medical challenges and I have had to learn to find tranquility in the points of each day that may easily be overlooked. I could become overwhelmed with the endless screaming for example but that ten minutes when he laughed and flapped at yet another hand dryer shows me that such a simple thing can bring so much pleasure. Or watching his sister get so excited at the workings of  revolving doors. These are the moments I have to treasure in the midst of chaos.

image

imageLike the moment the other day when I was playing a game with Naomi and for the first time her twin brother showed an interest too. It took so much for both children to play together: one requiring encouragement and reassurance that I would not allow her brother to once again ruin the game or become violent and the other requiring huge physical and mental support to have any idea what the game was about. But despite that we had a beautiful moment. It was simple. But my twins played together for a brief moment. They connected and that was the moment I will remember from that day, and hopefully they will too. A moment of healing, peace and beauty in an otherwise stressful and chaotic weekend.

Life is not easy. I will never pretend it is. My children have huge additional needs and that puts a massive amount of stress and pressure on us all. But in among the endless meetings, appointments, forms, phone calls, paperwork and high care needs there are moments of love, moments of beauty, and moments to treasure. Right now those are the things I am looking for in every day. It is the glimmer of gold dust in among the filth, it is the rainbow in an otherwise wet and grey day, it is the diamond that appears when you least expect it.

I came across this poem I wrote about twenty years ago and it sums it up:

Beauty in the simple

Have you eyes to see the beauty in the simple?
Do you stop to smell the roses as you drive?
Inspiration will derive from all that’s simple
And it’s the simple things that keep us all alive

Have you eyes to see the beauty in a raindrop?
Or notice all the colours in the grass?
Have you ears to hear the song the birds are singing?
Or watch the insects crawling as you pass?

Have you time to notice how the leaves are falling?
Or gaze as clouds are drifting through the sky?
Can you taste the purity of water?
Have you listened to a new-born baby cry?

Have you eyes to see the beauty in the simple?
Or grasp those tiny details all around?
A creator who was wise and so inspiring
Knew that beauty in the simple could confound.

It really is amazing how a simple thing can make a big difference. My son may never be able to say I love you but his hugs say so much more.

image

Grieving for a child I haven’t lost

*Preface: I feel it is important to say that while I stand by every word of this blog I do not always feel this same intense grief at all times. If you can relate to this blog I want you to know two things: you are not alone, and it does get better. With love, Miriam *

As I sat on the bench in a public park the tears came easily. Watching little toddlers peddling trikes and mothers chatting to babies. Seeing pre-school children laughing and chatting as they wheeled around the water on their brightly coloured scooters.

It has been building for a while.

The night before last it was anger and hurt as a friend shared how her 14 month old was defiantly talking back when they were trying to get her to bed. I wanted to scream and say ‘but she understands! But she talks!’ Instead I mourned silently.

The world goes on while I grieve for a child I haven’t lost.

It is a very different pain to others. I know the pain of not having children. I know the pain of losing a yet-to-be-born baby. I know the pain of losing someone very close. I know that feeling of despair and anger and hopelessness. People understand when they know you have loved and lost.

But how do you explain you are grieving a child you have not lost?

I get to read to my son. I get to bathe him and dress him and kiss him. I hear him laugh when I tickle him and get to push him on the swings at the park. He goes to school. He will watch a video sometimes. And yet he is lost.

I have yet to hear his voice. I grieve for the conversations we will never have. I grieve the fact I will never hear him sing or shout or chat with friends like those little ones in the park. I grieve for the fact I will never hear him tell me a joke or talk to me about his day at school. I grieve for the loss of never hearing him whisper ‘I love you’. I can only dream about what his little voice may sound like, how it might have grown in depth and tone as he aged, what sort of accent he may have had or how he would pronounce names of people he knew. A part of him will never be. And I feel the loss and pain of that.

I grieve for all the milestones I have missed and may never have with him. As I watched a mum bend down to hold her son’s hand today to help him walk I thought about how much she takes for granted. Her little one was not much over a year old and yet he confidently held her hand to take some steps. By the time my child did anything like this he was tall enough that I had no need to bend and his hands were nothing like as tiny as her son’s. I have skipped the toilet training, the bike riding, the learning to read and write, the school plays, the attending clubs and the having friends. I have been robbed of things others take for granted and that should be part of normal childhood. There is a loss and a sadness for times that might have been but will never be.

There is sadness that I can not walk him to school or that he can not go to school with his twin sister. There is pain relying on others to tell me about his day when I should hear it from him. There is heartbreak watching the neighbours child of the same age jump on a trampoline and my son can not balance on one leg let alone jump. There is a lump in my throat when people ask what my child wants for Christmas and he still plays with baby toys at almost seven. We have never experienced the tooth fairy with him, he has no concept of Santa Claws and neither chooses his own clothes nor has the ability to dress himself. He has never said ‘mummy can I have’ or gone in a strop because he can not go out to play. He has no friends his own age and doesn’t get invited to parties.

He is here but to many he isn’t.

I have a son. He is my pride and joy. I am so proud of everything he does. But I still grieve for him, for the things he will never achieve and the experiences he will never have. And I grieve for myself as a parent when I see a world of parenting I can only ever dream about.

As I sat on a bench in a public park the tears came easily; tears of heartache and anger, tears of frustration and pain.

It is all part of the journey. Before I can move on I need to grieve for the loss. And grieving takes time.

So please forgive me and support me. Life goes on and I understand that. I have no bitterness at that.

But sometimes those tears are needed. Bear with me as I grieve for a child I haven’t lost.

What if no-one ever understands him?

image

I am a parent. So by nature of the job description I worry for the future of my children. I worry about wars and disasters and car crashes and bullying and wether or not my children will be messed up by my parenting. But mostly I worry if anyone will understand my son.

Because at six years and nine months old I still struggle to understand him myself.

My child is so unlike me. I try to imagine what life is like for him but in all honestly I just can’t.

I talk to him all the time. But he never talks back. I read to him every day but he never asks anything about the story or attempts to learn to read it himself. I make him food and although he eats it I have no idea if he is just tolerating it out of hunger or if he actually enjoys it. I sing nursery rhymes to him but I have no idea if he understands a word I am saying.

When he imageis sick I have no idea if he is in pain and if so where.

I know he loves lifts, hand dryers and mash potato. But I have no idea why.

For over 600 days all he would wear was the same jumper. Lots of people have had guesses as to why but only my son really knows. And he can’t tell us.

I took him to a sensory room recently where there was something called a musical wall. He touched that wall in the same place over and over again to hear the same song. I was so desperate to ask him what is was about that wall he so loved. I would have loved to hear his little voice join in as that wall sang ‘you are my sunshine’ for the hundredth time.

What was he feeling? Has he enjoyed the other places I have taken him this summer? Does he like school? What would he like for his birthday?

There is just so many unknowns.

I have read books. I have spoken to therapists who apparently have trained for years in his conditions. I have attended so many courses. I have even spoken to many adults who have the same conditions as my son. I have spent six years and nine months living with my son.

And still so much about him is a mystery. We are all guessing. And we could all be wrong.image

Why can’t he speak? Why does he flap? What is it exactly about lifts and hand dryers that he likes so much? Why is it so traumatic when I cut his nails, or wash his hair, or use a different plate for his dinner? Does he miss me when he isn’t with me?

I want to know. Because if I don’t know who else ever will?

So yes, I worry about the future of my non verbal, severely autistic son with neurofibromatosis and learning difficulties.

I worry that people will take advantage of him. Or hurt him. Or never allow him to be himself. I worry about whether he will ever learn to communicate or whether anyone else will be able to communicate with him.

There were moments today as he pulled my glasses off my face yet again and climbed all over me that I wondered how much longer I would be able to care for him full-time. And that scared me.

He is my son. I adore him. But I don’t always understand him.

And not for the first time I wonder…

What if no-one ever understands him?

If he was your baby would you not worry about that too?

They never told me THAT at diagnosis!

imageThey never told me THAT at diagnosis!

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

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

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

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

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

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

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

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

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

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

How do you explain they won’t ‘get better’?

image

If I had a pound for every time someone told me my children will ‘grow out it’, or ‘be fine when they are older’, I would be a rich woman. People expect you get ill or have difficulties for a short time, you have a period of struggling, and then you ‘get better’. You ‘get over it’ or ‘snap out of it’, or you have an operation or take medication, and then you become ‘normal’ again and function like everyone else.

But what if the difficulties and struggles are life long? What if you won’t get ‘any better’ even if you improve?

It is three years this month since we received my sons first major diagnosis. Though the initial shock and pain has eased I still get sad some days. Because three years on we are still in that same place.

He still has the exact same diagnosis. He hasn’t been cured. He hasn’t went into remission or stopped having his difficulties. I can’t read his diagnosis report and think they are talking about an altogether different child than the one sitting on my knee.

Yes he is making progress. But it is slow. And in spurts. And sometimes we still get regression. Oh are we allowed to mention that? The dreaded ‘regression’ word? Am I allowed to admit that sometimes my children struggle more than they did before? Or lose a skill they previously mastered?

How do you explain they won’t ‘get better’?

It sure looks like my son is getting better. After all for 678 days all he wore was the same red school jumper yet all of a sudden now he will wear other tops? That sounds like improvement. And it is! My daughter has started to master reading and writing. Surely that is her ‘getting better’ you suggest? And yes it seems so.

On the surface my children are both coming on well. We have had a recent successful play date, we have had them taking part in school activities I never dreamt they would ever manage, and two weeks into the summer holidays we have managed some days out and visits to parks. It seems like everything is ‘getting better’. It seems like to some that all is well.

Because people find the life-long bit so hard to understand. People see what they want to see. And after a while they get bored with seeing the same struggles, the same excuses and the same problems. People want to help and get upset when they do help but the problems still exists even when they have done everything they can to support. We look for quick fixes and short-term solutions and life long conditions need on-going, energy draining, never-ending support. It requires a commitment few are willing to make.

It is hard for people to understand why three years down the journey I still get sad some days. Why? Well because some days it feels like I am still where I was three years ago. It hasn’t gone away. And it never will.

There is no cure.

My daughter may ‘get better’ at social situations but it will never quite come naturally to her.
She may ‘get better’ at understanding that not all language is literal in meaning. But idioms and sarcasm will always need explaining to her with patience and understanding.
My son may ‘get better’ at being understood without any speech. He may one day learn to communicate via a device or language or pictures. But he will always have severe communication difficulties to some degree.
My son will never ‘catch up’ with his peers. He is not suddenly going to run a race, or write a story or learn to swim. He may never speak.
I have no idea when they might master potty training.

We are in this for the long haul. When others get ‘bored’ and move on we will still be here. We will still be struggling on.

Doctor’s can’t ‘cure’ my children. They won’t ‘get well soon’ or ‘grow out of it’. It won’t ‘magically disappear’ when they get older or become teenagers. In fact it may magnify.

You may not see them struggle but they do. It may seem ‘cute’ to flap and suck on your clothes at six but whimageat about sixteen? It may seem ok to have your tongue out all the time at six but what about ten? Or thirty?

My children have autism. My son has neurofibromatosis. They will become adults with autism one day and my son will become an adult with NF. His tumours will grow with him and his skin will grow fibromas and patches throughout his life. He will become an adult with social and communication difficulties and a learning disability.

They will ‘get better’ at developing a thick skin and coping with ridicule. They will ‘get better’ at devising coping strategies and becoming a part of society in some way or other.

But they won’t ever ‘get better’ from their life long conditions. And I may never ‘get better’ at coping either.

I may have more good days now than bad. But some days I am right back where I started three years ago. Life long condition means a life long journey. I know some people find that hard to deal with. But you know what? So do I.