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

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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.

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Why is it so hard to hear what you already know?

imageSometimes you already know something. Your mind has already gathered all the facts and knowledge and came to its own conclusion. Circumstances have been leading up to things and you *think* you have it all worked out.

That is until someone else says what you have been thinking out loud. Then suddenly your world crumbles and you go to pieces, even though you kind of knew it anyway!

In one of our many meetings this last week a professional who has seen my children regularly for over six years voiced out loud my inner thoughts on the subject of my sons inability to speak. Isaac is now six and a half. And he still has no speech. He makes noises, he screams, he takes me by the hand to things he wants, and now he is older he sometimes just helps himself. He has only been pointing for around a year.

I swallowed hard and asked her for her honest opinion. “Will Isaac ever speak?” I *thought* I was ready for what she would say. I already know deep down that the older he gets the more unlikely it is he will talk. I live with his frustrations and anger everyday and hold him while he cries every night. I celebrate all his efforts at communication in every form yet still long to one day hear his voice. But the realist in me knows that time is passing and he still has yet to master the tiniest of words that babies less than a year say with ease. We haven’t had the ‘ta’ or ‘hiya’ or even the basic ‘goo’ and ‘gaaa’. We have no waving goodbye or clapping in glee. Eye contact and joint attention that comes naturally to the youngest of children is still a mystery to my six-year-old. I am not in denial.

Yet when she told me my boy is unlikely to ever speak to me it still broke me.

Why is it so hard to hear what you already know?

Next month marks the three-year anniversary of his first major diagnosis: Classic autism with global developmental delay and severe learning difficulties. He had only recently mastered walking at that point, had no language and was very much locked in his own world. We had been told he had autism since he was 21 months and had yet to meet any professionals who disagreed with this in any way.

Yet on the day we took him to that clinic assessment there was still a tiny part of me hoping everyone was wrong. My world fell apart when I left that appointment hearing what I already knew spoken back to me by someone else.

Isn’t it strange how hard it is to hear someone else say what you already know?

Maybe when no-one else confirms it we just try to somehow forget about it? Maybe we don’t really face our own worst thoughts? Maybe the reality of someone else saying it just makes us realise it is true after all. But then they add to the pain and harsh reality by sending it to you in writing. And we find ourselves mourning in our darkest moments all over again.

I sort of knew deep down there was more going on. He had other ‘symptoms’ children with autism didn’t really have. But I never wanted to hear someone mention that out loud. At least not to my face. Yet one day five months later we heard the doctor tell us our baby also had neurofibromatosis type 1. Combined with his other conditions (and we may yet hear more as we wait for full genetic blood results to come back) the future is not the brightest for my son.

I know he will need care throughout his life. I know it is unlikely he will ever drive, own a house, have a successful career or go to university. But am I still not quite ready for someone to voice those things to me.

Why is it so hard to hear what you already know? Because it means you have to finally face up to it. It means others know your worst fears and concerns. It makes you vulnerable. It brings emotions to the forefront you would rather others never got to see. It is like stealing away that tiny shred of hope you held on to for dear life.

Someone asked me how the meeting went. I told them we were just told some stuff we already knew. They looked at me in wonder as the tears ran down my face.

Why is it so hard to hear what you already know?

Still a child

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Dedicated to the wonderful children who are too often defined by diagnosis, difficulties and impairments.

He sits in a wheelchair with a bib around his neck. People talk about him like he isn’t really there. They feed him something without thinking wether he likes it or not. He has no say where they take him or how he is dressed. But just because he can not speak do not assume he can not understand. Give him a chance. Would you treat any other six year old like that? Treat him with respect and love. Let him try. Let him be included. He may be disabled, but he is still a child.

He screams in your face when you touched him. He bit himself when you closed the door. He is flapping his hands at the rain falling at the window and isn’t interested when you say his name. You don’t need to shout louder because he isn’t deaf. As frustrating as it is to watch, losing your temper at him won’t help. People talk about him like he is unaware. They had information about him but never took the time to read it or do anything about it. It was filed away and forgotten. People try and engage on their terms taking no account of his interests or sensory issues. Some even physically remove him or close the blinds.window Where is the respect? Where is the love? He may be disabled but he is still a child.

She lies on the floor trying to roll. People are pushing and pulling her this way and that. Talking over her noises and ignoring her pain. They think they are helping. They talk to each other without looking at her face, her eyes and listening to her cries. They have their agenda, exercises to increase her movement that no-one has involved her in. Their intentions are good. But have they motivated her and relaxed her? Would you expect any other five year old to exercise without motivation or encouragement? She may be disabled but she is still a child.

She stands at the side of the playground watching all the others play. The adults find this concerning so they devise strategies to include her and teach the children to not allow her to be on her own. She is badgered by voices shouting her name and pulling her hands. She is forced to join in, forced to interact when she didn’t want to. Why did no-one ask her what she wanted? Did she lose the right of choice and privacy when they diagnosed her with autism? They think they are helping but no-one thought to find out if she was happier watching and joining in if and when she wanted to. While other children can watch it seems she isn’t allowed. She may struggle socially but she is still a child.

He can’t speak so they buy him toys that they think he should like. No-one thinks to watch him and see what his interests are. He wants to look at a flyer from a frozen food shop but adults deem that wrong and would rather it was a book. When he licks the toys they take them out his mouth and take them away. They set up fancy sets with tiny cars and bricks that he can not hold and expect him to play like any other child. They get upset and annoyed when he brakes them and screams. They put dvd’s on he has no interest in because it is deemed more age appropriate. They think he can not speak so he can not communicate. But he can. He would rather the baby toys still but they are too embarrassed to buy them for a six year old. He may be developmentally delayed, but he is still a child.

He swears at your face when you say hello. He came out of school kicking and screaming and threatening to kill his teacher and classmates. The other children are scared of hi20140225-210850.jpgm and the school threatens the parents with the police. They label him as disobedient, a bully, having challenging behaviour. They yell at him more than they talk to him. He is retrained far more than he is ever hugged. He is isolated from his peers and banned from after school clubs. They try to fix complex problems with behaviour star charts and bribery. He may have difficulties, but he is still a child.

Despite physical, mental and and social difficulties these are all children. Children who deserve time, patience, understanding and love. They have a right to choose, to be educated and respected, to be listened to and included. They deserve to explore the world around them, learn in their own way and play with toys they enjoy. They deserve hugs and tickles and kisses.

Difficulties and diagnosis should never define anyone. Even if they can not feed them self, dress them self, attend to their own needs, speak or struggle with social interaction or behaviour they are still worthy of respect.

Because most of all, they are still a child.

Just imagine if that child was yours.

So now what?

Have you ever waited for something for a long long time, fought for something until you were weary of fighting, or investing your life in something until it seems like it is all that consumes you? I know lots of us have.

I longed to have my children for 10 very long and seemingly never-ending years. I have fought for both children to recieve their diagnosis. I have fought for my son to receive the right educational environment to thrive. I have fought for basic adaptations to our home to allow my children to fully enjoy all that it has to offer. I have fought for help and support for both my children. And for the last two years I have been fighting for respite.

But with all this fighting, all this striving and pushing and waiting, what do you do when you finally get what you have been waiting for?

My children are here now.

They are now both diagnosed.

My son is in a fantastic school and doing well.

We now have railing and grips on both outside stairs and extra railings on each side of our inside staircase.

Both children have a co-ordinated support plan in place.

And would you believe it…we had a letter this week to say that starting from this weekend BOTH children will be receiving a few hours ‘respite’ each fortnight. Well, they are calling it a Sunday Club (well we would not want them to admit we actually need respite now would we?) but it is the same thing. This Sunday I get a few hours break.

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So now what?

If your child has recently started school, or recently been diagnosed, or you have finally got the answer you have been waiting for for a long time it can be a time of real mixed emotions. Relief, delight, satisfaction, and possibly even joy. But it can also bring confusion, emptiness, a whole lot of questions and a feeling of overwhelming emotions. What do I do now? Where do we go from here? Will this be all that I was hoping it would be? How does this change things?

Take time to savour the moment. Take time to digest the news. And whatever emotions that brings, allow those emotions to come to the surface. It really is ok to get excited about a breakthrough. It is also ok to cry when you have finally reached that place you have longed for for years. It is ok to kiss the joiner who finally fitted your bannister because you know that finally your son can climb those stairs to his own room safely (so ok that might be taking things a bit too far but I did hug him)

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It is ok to want to know more when your child is diagnosed. It is ok to want to frame that letter that says finally they will be getting the right support they deserve or get to attend the right school. It is ok to want to keep that positive pregnancy test when you have wanted a baby for so long, or want to frame the wedding certificate when getting married has been your life’s dream. It’s ok to hold those new house keys in your hand and have a silent moment of thankfulness.

But when the initial emotions settle and you are thinking what’s next? Now what? What do I do now?

Here’s my advice: Enjoy the rest. Enjoy the not fighting. Enjoy a period of things going good. Let the change settle down. Because if everything was always a fight, always a struggle and always a waiting game we slowly become sick. There will surely be more fights ahead. There will always be things needing doing around the house. There will be something else my children will need as time goes on. There may be things that are not quite right yet. I still need to secure the right support for my daughter starting school. My son is still not speaking. There are always loads of appointments still. I would love another child.

But right now I am savouring the taste of victory. It may only be for a few hours once a fortnight. But whatever they call it…it is respite.

I can actually taste that hot cup of tea…and after 5 years I will get to hear a church service…it’s true what they say ‘a longing fulfilled is a tree of life’

“Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.” Prov 13:12

If you are still waiting for that day of diagnosis, if you are still longing for that baby or husband or new job, if you are still dreaming of that bigger house…keep fighting! Keep believing! Never give up hope!

But celebrate the victories as you go along. Because without the fight you never really appreciate the victory. When I leave my longed for, beautiful, treasured children on Sunday I will give them both a kiss and a hug. And I might just kiss the respite workers too!

What now? Well who’s putting the kettle on?

It will get better, I promise

“Blood mummy. Blood mummy.” she cried just as I was trimming her finger nails.

The tiniest nick. But lots of tears. And plenty of blood.

If there is something sure to get my baby girl upset it is blood. She becomes hysterical at the sight of it. I just know it will be one of those stories I will hear repeated and repeated and repeated and will never be allowed to forget. But in the meantime I have to clear up blood that is pouring like a river and comfort a little girl who has gone into overdrive.

So dad wraps her finger in some kitchen paper. And I get some plasters.

“No mummy, not a plaster” she screams.The sight of the first aid box just made her ten times worse.

She doesn’t want a visual reminder of her pain. She wants it gone. She doesn’t want anyone else to see her wounds. She just wants to get better. I don’t have time to sit and explain or prepare her for the fact a simple plaster will make it all better. I even try a children’s plaster with lovely pictures on. She pulls the finger away dripping blood everywhere.

And the tears keep coming as fast, if not faster, than the blood from her finger.

We don’t do unpredictable very well in our house. We do routine, structure, preparation, This isn’t as much the pain that is causing her stress this is the look of blood, the not knowing what we are doing, the people being too close to her, the mass of sensory feelings her body is getting bombarded with. This is fear. This is the thought that things will never ever be better.

Plasters don’t work. So mummy held her 5 year old baby in her arms and firmly held kitchen towel over the small but highly distressing wound. To her this is massive. And I understand that.

“It will get better, I promise.” I whisper.

Slowly but surely it does of course. But her emotions and heart beat and adrenalin need to catch up with reality. That takes time. The comfort of being held and spoken to softly help. She is holding onto that promise. Though she has no visual sign of the reality she is trusting.

“It will get better, I promise.”

A little cream, a firm wrapping of kitchen paper and some micropore tape to hold it down does the trick. For now though she knows she is different. She feels that everyone will stare at her. She feels emotionally vulnerable and ready to cry at the slightest thing. The pain is still raw. Her mind can not yet think of anything else other than that cut. Everwhere she looks is obvious reminders of the pain. Drips of blood on her pyjamas, on the seat and on mummy’s clothes. Drips that right now seem massive. But to someone who has no knowledge of the situation they may even go unnoticed.

I remind her clothes can wash. Chairs can be cleaned.

“It will get better, I promise.”

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Two bedtime stories later and a little more reassurance and she was asleep. Tomorrow that little cut will be much better. In a few days time it will seem much less dramatic. The memory will be there of course. The trauma will still be there too. But in time that will fade a little. As I promised her, it will get better.

And I can promise you things will get better too.

Sometimes life is like tonight and suddenly something traumatic and overwhelming happens. And you may not be prepared. You child got diagnosed with autism, your marriage ended, you became ill, you lose your job, your landlord wants to sell your house, there is a death in the family.  Life has a way of throwing things like this at us. And just like my daughter when she saw that sight of blood, panic sets in.

Although my daughter is too young to voice it, she was probably thinking, like we all do,

‘How will I ever get over this? How can I stop this from happenin?. Can someone help me? Please just let this stop!’

It is ok to feel like that. It is natural.

Let people help. The right person can come along with that first aid kit, and that reasurring loving voice and tell you,

“It will get better, I promise.”

At first you see the plaster, that visual reminder that something is wrong, and you might panic more. You think everyone will see your pain. You feel vulnerable, insecure, broken. We all feel like that at times. It is ok to cry. When it all seems temporarily overwhemling crying is instinctive. It is part of the shock release. Sometimes it is the pain that is the issue and other times it is the thought that everything has changed, the not knowing what to do now, the sensory overwhelment of it all.

In that period of being wounded, of needing comfort, of being confused and emotionally vulnerable we all need the security of resting in someone’s arms. In my times of need I am so thankful for the loving arms of my Father God. Of being able to find refuge in the shelter of his wings. But we need people too. Friends to comfort us and keep reasurring us that it will get better. We need helped. Supported. Loved.

You may have to go through a period like my daughter of knowing you are different. I know when my children were both diagnosed with autism I suddenly realised how different life was for me. I thought my ‘wound’ was so obvious to everyone. I felt the pain and hurt would never go away. It felt like everday I was reminded of the fact my children were not like others. I felt like everyone would see that ‘cut’ and ask all about it. I seemed like I was dripping reminders of autism everywhere I went. I felt sad, alone, confused, vulnerable.

But time heals so well. I rested. And one day the wound was no longer raw. My children still had autism, just like my daughter still had that cut. But the diagnosis day became a memory. Sometimes, like Naomi, I want to replay it and talk about it. And that is ok. We just need to find the right people to listen. But things have moved on. When Naomi wants to talk about the day her finger got cut I will listen and comfort once again if the momory restirs emotions, but I will be reminding her that it got better.

She can’t keep that bandage on forever. It would not be healthy. I can’t keep going back to diagnosis day either. It happened. And things changed. But you know what? It got better. I grew as a result. I learnt, I became more compassionate, and I found new friends along the way too.

In the year I have been blogging; In the 13 months since we found out my son and husband have an incurable tumour condition; in the 18 months since Isaac was diagnosed as classic autism, global developmental delay and pica; in the 3 months since my daughter was also diagnosed as having autism; in the 4 months since we found out Isaac is visually impaired: these words have been my comfort, my strength and my hope.

It will get better, I promise.

Let them comfort you and bring you hope today too, whatever you are facing.

It will get better, I promise.

A label won’t define them

Are you one of those shoppers who reads the labels before buying a product? Do you want to know how much salt it contains, whether it has any artificial products in it or even just how long a use by date it has? Or do you just recognise familiar brand labels and put them in your trolley because you know your kids will eat it? Whatever you do the label serves a purpose but without opening the product you still won’t know what it is actually like.

Autism is the same.

‘Autism’ is a label that was given officially to my son on 31st July 2012. It is a label he will have for life. Some people see his label but don’t see him. Others use the label to get a better understanding of his behaviours and tailor his education to suit his needs. Some see his label as just an excuse for anti social behaviour. Still others are frightened by his label. Many do not understand his label and a few see past his label and get to know Isaac. And even fewer are interested enough to read the small print and see the other labels he has such as global developmental delay, severe learning difficulties and neurofibromatosis type 1. 

So I thought it would be good to explain his label (his diagnosis) a little more:

Autism is a complex lifelong condition that affects how a person sees and makes sense of the world. It is a spectrum condition meaning some people are affected mildly and others more severely. There are four main areas it affects including:

social communication (Isaac can not talk or point and struggles to make his needs known. He does not use social gestures like waving or pointing or blowing kisses. He is unaware of others around him much of the time and can not read facial expressions such as knowing when someone is happy or sad. He can hit or bite as he does not know this is not a socially acceptable means of communicating)

social interaction (Isaac does not give eye contact and ignores people when they are talking to him. He has difficulty following simple instructions. If he wants to sit on a seat and someone is already on it he will sit on top of them as if they were not there. He only plays on his own. He does not understand other childrens games. He will break up a train set unaware his sister is playing with it.)

social imagination (Isaac is unable to imagine dangers exist such as moving cars on a road, or falling down a hole. He can not cope with changes to his routine because he can not ‘imagine’ doing anything differently. He can not cope with new places as he has no concept of the wider world around him. New toys stay in the boxes as he can not imagine they could be taken out. He can not imagine what another person might be thinking so can act very inappropriately. He is unable to work out what other children are playing or that a train set toy is representative of a real life train.) 

sensory issues (Isaac processes sensory information differently to others. His play is all on a sensory level and he finds great delight in water play or exploring feathers. He likes to scan things across his eye line. He hates socks and shoes on. He chews and bites everything. He prefers to have no clothes on. He likes deep pressure. He loves the detail and repetitive patterns on things. He adores straight lines.)

 

But this is only how those areas affect Isaac. Everyone with autism is so unique and the areas of difficulty can affect people in all different ways. It is very likely Isaac’s twin sister will also be diagnosed as having autism later this year. But, she can talk fluently, gives good eye contact, is socially aware and academically thriving. Yet they could both have the same label.

Because a label can not define a person. 

You have to open a tin of beans and taste them to know what they are really like. For all a washing powder label says it gets “rid of every stain known” until you try it on your childs ground in blackcurrant juice stains you will never know how good it is.

Please don’t be frightened of my childrens labels or diagnosis. And please never let it define them. They are funny, boisterous, happy, loving children who are unique in every way. Autism helps us understand them but it will never define them.

Here they are playing together with a toy kitchen. Communicating, interacting, using imagination and experiencing all sorts of sensory feedback like noise and colours and movement. Because no label can define them!

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