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?