So yes…I am doing it for ME!

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

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

There I said it.

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

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

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

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

So why am I doing this to them?

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

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

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

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

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

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

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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.

It’s all about me!

Being positive is not being in denial. Posting highlights of your day on social media is not being fake. Trying to find hope in hopelessness is not wrong.

Attitude means everything.

And recently I have had to give myself a good shake.

Living with the daily challenges of two children who struggle can really get me down. Some days, more than I would like to publicly admit, I cry. I worry about the future. I struggle through everyday, often silently. And I feel alone.

But then I realised something important. I came to realise it was actually all about me!

I could look at things negative. Or I could try to see a positive.

imageFor example I could have wallowed in upset at the thought my daughter was so anxious she never made it to her first ever school trip. I could have become angry that she seemed to be excluding herself due to fear. But instead I chose to take her out for the day instead and shared a picture of her smiling face at a science centre rather than dwelling on her inability to join her peers at the zoo. School trip failing verses mummy and daughter quality time? Which would you have thought about more?

imageSame with sports day. I could shed many a tear over the fact my daughter was unable to join in many of the activities due to her difficulties. I could share pictures of an older girl having to take her hand and support her for even the simplest of races. Or I could take pride in the fact that on the tenth go at running around the cones my six-year-old finally had the confidence to say ‘can I try that myself?’. Those nine turns at needing support could have broken me but that final time doing it independently will make up for that every single time.
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And then there was her class assembly. I was hurt and devastated when my daughter came home to say she was the only child in the class who did not have a speaking part. Her teacher had asked her and she had told them she felt she could not do it. Though I admired her honestly I have to admit I also felt so sad. For her, and for me. But can I tell you something? There was not a dry eye in the house on the day of her assembly when she took centre stage and held the entire show together with the most crucial part in the play despite not saying a single word! In the words of my six-year-old, ‘We can’t all have speaking parts. Someone has to do the acting!’ There is so much wisdom in that.

I could think about the sadness of taking her to yet another appointment.Or I could look at her smile as she played innocently in the waiting room and her sheer delight at being given insoles to help turn her feet. I think as adults we too often set our minds on that appointment rather than the child-like look at it all.
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I could be angry at the fact I never get to sit in church with everyone else due to my children’s needs. Or I could take pride in the fact my children will sit outside the hall in their own little bubbles allowing me to at least be in the building. This is progress.

I could be embarrassed that I took my children to visit a friend and my son preferred to feel her garden bush than to be social. Or I could snap a picture of his happy face and be grateful my friend accepts us for who we are. And is happy for us to come back anytime.
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I could shed tears at the fact my daughter recently went to a party and spent two hours sitting at the side next to me on her own. Or I could be delighted she was invited in the first place and see this as progress that she stayed in the room and enjoyed watching.
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I could become frustrated at the fact everywhere we go my son is fixated with the elevators. Or I could ride with him, film him and discover on play back that he actually said the word ‘again’! Had we not been at that lift I would have missed that word! He hasn’t said it since but I have a video as proof and in time I may one day hear it once more!
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And finally I could despair at the fact that for almost two years now my son has refused to wear anything other than his beloved school jumper. I mean literally every day I only get to see him in red. It started off funny but then in time I somehow gave up hope. Then, just today, he let me put a t-shirt on him and he kept it on happily all day long! And after all those tears, hopelessness and feelings of despair, I found a reason to smile again.
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My children have some real struggles. I will never deny that. And everyday is a challenge. But sometimes it isn’t about them. It is about attitude: My attitude. Sometimes it is how I see things that makes a real difference to everyone else.

And now I realise that: it is all about me!

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?