I’m not perfect but I am perfect for them


I have a confession to make: I got annoyed at my children today! What? You have done that too? Seriously why are we so afraid as parents to admit we are less than perfect.

 
Last week I took my kids to the dentist at the wrong time. I sent my son to school the week before without any lunch. He is not able to talk so could not tell anyone. I blame sleep deprivation personally.

 
I do my best. It is what we all do. 

 
But still we never seem to feel we get it right all the time. That feeling is magnified when your children have extra support needs.

 
I remember eagerly buying push along toys, walkers and sit on cars for my toddlers, only to have them sit unused in a corner as my son was three before he walked, by which time they were all far too small for him. I tried to do the right thing, the ‘perfect’ thing, but for my children it was anything but perfect.

 
I sang nursery rhymes with my babies. I read to them, talked to them all the time and blew bubbles. Yet still my 8 year old to this day can’t say a word. I did all the right things but for him it just wasn’t to be.

 
I bought this wonderful potty for my kids. You know the ones that sing to them when they pee and even looks like a toilet. That was a total disaster!

 
I took my pre-schoolers to museums, cafes, soft plays, garden centres and farms. One of them screamed all the time and the other was terrified. What seemed the perfect thing to do was in fact anything but for my autistic children who struggled with sensory overload everywhere we went. 

 
imageSo I decided to stop being the perfect parent and instead become the perfect parent to THEM. That meant taking my son to see lifts. It meant taking them on train rides and joining in games of lining up toys. It meant accepting them for just who they are and allowing them to be autistic.

 
The best toys I ever bought them were second hand. I gave up full time work to care for them so I can attend all their meetings, keep up with all their teams of professionals and ensure they get the support they both need. It means I am there to keep the routine they need to feel secure and calm my son when he is in meltdown.

 
Being the perfect parent for them means sometimes making the same meal every night for a week just to see them eat. It means trailing shops to find the only juice my daughter will drink. It means cutting out labels in their clothes and ensuring the materials are soft and not too ‘busy’ so as not to upset them. img_0046It means reading the same bedtime story every night for two years in exactly the same way. It is answering the same question for the hundredth time and remaining patient.

 
Do I get annoyed at them? Of course I do. I am human. Do I annoy them? Absolutely! Do we love each other and hug often? Yes we do. 

 
I am never going to be that parent who shows off a shelf full of trophies my child won at dancing or football. I am not going to be the parent who home makes Halloween costumes or bakes the most incredible birthday cakes. My kids have way too much screen time than is recommended and my son can’t even write his own name at 8 years old!

 
But I know what triggers a meltdown in my son and how to avoid it. I know what makes my daughters anxiety reach sky high and can work through this with her. I know the limitations of my sons eye sight and the fact he can not see pale colours. I know exactly what reading book my daughter has this week and what characters she is into just now. I know their routines for bedtime and school days and follow them like a robot so as not to upset them.

 
Those things don’t make me the perfect mum, but they do make me perfect for them.

 
I am blessed to have them. We are blessed to have each other. None of us are perfect but together we are the perfect team.

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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.

When reality hits

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I worry for the future. What parent doesn’t?

I booked my kids first ever proper birthday party today. A small affair in terms of what the play centre are used to but a massive leap for us. I used to worry that my children would never have a birthday party, or even understand what birthdays are. Now I am worried none of the children we invite will come. Will my twins notice? One of them might but the other still has no idea what parties or presents or cards are all about.

That worries me. He will be 6 in a few weeks time.

It worries me that he is still in nappies. It worries me that he still has no speech. It worries me that he still can not dress himself, comb his hair, respond to his name, read, write, jump, paint, wash himself, ride a scooter or a bike, understand instructions or use cutlery…all skills other children his age take for granted.

The lady booking the party asked me what 4 things the children would like to eat at their party. She gave us a choice. I asked one of my children and as I looked at the other one a silent tear ran down my cheek. It was unexpected. It was out of character. I try not to cry in public. But at that very moment reality hit me: my son is almost 6 and I can’t even so much as ask him what he would like to eat! He never even came when I called him.

I shouldn’t be with them in a soft play centre; not today. Today is Sunday and on Sunday we go to church. What on earth was I doing on my own with 5 year old twins, nappy bag still in hand, in a soft play centre on a Sunday morning? This wasn’t how it was supposed to be. They should be in Sunday school hearing stories from the Bible, making crafts for me to treasure for years to come and singing choruses. I should be listening to inspirational teaching, having fellowship with friends and worshipping God.

The reality is I just could not face it today. In soft play (at least as quiet as it is on a sunny Sunday morning not long after it opens) we are ‘normal’. The changing rooms are through the same door as the toilets so no-one has to know I am still going to the ‘baby room’ with children more than half my height. As my son buries himself in the ball pool no-one sees that he is licking them all and flicking them in the air to see the shadows they make as they fall back down. The noise of other children playing and the music drown out his squeaks and squeals and the noise of him flapping his arms against his chest. Lots of kids take off their socks even when they are not supposed to so he sort of gets away with that too.

But once we leave reality hits once again. I have to lift them both into their car seats. I have to strap them both in. I have to type the pass code into his iPad because he still has no concept of numbers or what to do. The entire way home (thankfully less than ten minutes) I hear just one word, and it isn’t from the lips of either of the children! Isaac has found an application with numbers that if you press them the name of the number is said…again…and again…and again. It could be animal names, names of people, letters, anything really. He just likes the sound. 2,2,2,2,2,2,2,2,2,2,2,2,2,2,2,2,2…….this is today’s ‘sound’. It may be tomorrow’s too. And for the rest of the week. Perhaps even the week after too. He has no concept of what it means, he isn’t going to repeat the sound or even start to write the number…it is just a noise repeated over and over and over…until you feel sick and want to throw that awful thing in the bin.

The reality is it is THE only thing that he will do for any length of time. And I mean even a few minutes. Other that eating it is the only time he sits still. So the iPad has to stay…2,2,2,2,2,2 included!

I worry what he will find to do tomorrow. I worry that one day there will be no red school jumper in his size for him to wear. I worry how I will continue to lift him in and out the bath, in and out of car seats and his buggy as he continues to grow and get heavier by the day. I worry that he might never ever speak. I worry how people will look after him. I worry I might one day be changing nappies on a teenager or grown man.

Right now I am wondering if he even cares about having a birthday party or if he would be happier alone in the play centre licking the balls and flapping his chest.

Then I smile knowing if nothing else he will love his chocolate birthday cake and whatever the meal is he will eat it like I haven’t fed him in the last 6 years.

Reality hits: I have a beautiful boy and he has made it this far. Whatever the future has we will get through it together. I booked him a birthday party today and there was a time I never thought that would happen.

That is the reality of life with disability: knowing there is still a long long way to go, but knowing you have come a long way too.

When reality hits.