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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When it feels like you are on reality TV as an autism mum

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I am not a big fan of reality TV despite the fact I am actually quite an avid people watcher at times. Sitting on a park bench watching people walk dogs, have a romantic stroll or push a toddler on a swing is much less intrusive than watching their every meal, their every move and listening to their every word.

‘Intrusive’ is a word often used about reality TV but it could just as easily be used to describe my life as a mum to two children with autism.

Since my children were young my life, my home, my children, my lifestyle, and even my marriage seems to have been laid open for so many people. Some weeks, even now four years since my son was diagnosed, my front door feels like a conveyer belt for professionals.

Just like a reality tv star I feel sometimes like my every move is being watched.
I have had occupational therapists, social workers, speech and language therapists and mental health nurses in my home when I have been making tea for my children or playing with them and some have even went as far as to watch my children eat. I signed up for support but my children never signed up to be watched like that. I don’t t believe it is healthy for them but sometimes it just can’t be helped. While professionals have been visiting my children have required their personal needs to be met as well. Although I remove my children from the room for this it is still embarrassing and upsetting for my children and disturbing for us all.

Just like a person on a reality TV show I know I am talked about lots.
While I get invited to many meetings I am also very aware that there are many meetings, emails and discussions between professionals that I am not privy too. People form opinions of me and even have a right to record these opinions in reports. Parents are ‘fair game’ simply because our children need extra support.

Like reality shows for the entertainment of others I am often given extra challenges and problems to face.
New forms to fill in, problems at school, fighting for transport or services, juggling appointments, lack of sleep, challenging meltdowns, or dealing with change: I am expected to handle these with patience, grace and professionalism as if there is some major reward to be gained from it all. I wish there was a reward.

Like reality TV not all my colleagues are actually for me.
Unfortunately in the current climate of cuts to services families that should be supporting each other are actually having to fight against each other for school places, funding or access to services. It is often a case of every man for himself when in fact this is not good for anyone. Sadly not all the professionals working with my children like me either. I am actually ok with that as long as they support my child. Some of the professionals I don’t actually like either!

Like reality TV we are watched and then forgotten.
Professionals visit, or see us in a clinic or attend a meeting about my children then the second we are ‘offline’ nothing seems to happen. We are yesterday’s news as they have long waiting lists, too many clients and not enough resources to go around.

Like many reality TV stars my name and face are now familiar to more people.image
There is a certain person who holds a pretty major role in our education department. Apparently he knows my name well now. I can’t imagine how that is! My children’s Head Teachers know my name well as do many Heads of departments and clinics.

Perhaps the reason I have little interest in watching reality TV is actually because I live it enough daily.
Or perhaps my life has enough drama, characters, emotion and challenges without any need for more.

Just in case you missed it earlier I had lasagne, salad and home made chips for my tea tonight!