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!

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When other people get involved

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The uniforms are bought, the bags packed, and the children prepared to once again start a new term at school. It is with great anxiety and fear that once again I release my children into the hands of others to be looked after and educated for six hours a day, five days a week.

For the last seven and a half weeks I have pretty much been with them both 24/7 and even though that has brought pressure and stress at times, it has also been a relief to not have to deal with other people and schools for a while.

Now that is all about to end.

Once again other people are about to get involved in my life.

When other people get involved…

1. It is easy to feel like a failure.
While I know my children have thrived this summer under my care there will be teachers and therapists within my children’s schools who will only see the fact that their development has not been stretched perhaps as much as the would have liked, or they have not been challenged educationally or encouraged to socialise with others their own age enough.
Then there is the fact other families will stand in the school playground boasting of holidays abroad, play dates with friends and new skills their children mastered over the summer which my children may never achieve.
Being around other children the same age as mine and seeing what they can do and say has a way of making me feel like an utter failure within minutes, even if unintended.

2. Everything suddenly becomes a big stress.
In summer we ate when we were hungry, if we wanted to have pizza for lunch instead of dinner we did. We ate out now and again, we took packed lunches and went out for day trips and we had fish and chips at the end of a busy day. But now my children are returning to school where one barely eats and drinks and now food will become a huge stress again.
Now the professionals are back involved there is also an expectation to ‘move the children on’ in areas they have become stuck at and we are expected to follow “proven” methods or be criticised even when these may not be right for our child. Stress!

3. The pressure to perform becomes huge.
Did anyone care if my son wore an un-ironed t-shirt last week? Returning to school brings with it a pressure to have children dressed smartly, in uniform, and arriving on time, having eaten healthily and slept well. All of those things are major challenges for my children with sleep difficulties, sensory issues, limited diets and no understanding of time. Forgetting homework, leaving the packed lunch at home or not remembering PE kit has you instantly marked down as a terrible mother and raises my daughters anxiety to a level that makes her ill. There is pressure to keep up with the other children in the class and do weekly activities too. Having other people involved in caring for your children puts so much pressure on us all.

4. I lose knowledge that is vital to communicate with my children.
My son is non verbal and both my children have social and communication difficulties (autism). Being with them all summer has meant we have learnt to understand each other. My son would only need to find a photograph to show me and I would immediately know what he was trying to communicate because I was there with him and I know what he enjoyed. When other people get involved I lose that vital connection and no school diary or ten second talker can make up for the fact I am not with my child and therefore I have no knowledge of what he is trying to communicate. He may have heard a song at school he wants to hear again and I am expected to just ‘know’ and because I don’t we have hours of self harming, frustration and upset all round.
Neither of my children can properly communicate to others when they are hurt or where. Neither will adequately communicate when personal needs require to be met or that a food may make them feel sick. This is the bit I hate: that not knowing and having missing pieces that they can not explain to me and I have no means of working out.

I know there are some advantages of having other people involved though. It is important my children become more flexible and less rigid in insisting only I can meet their needs. They also do need to learn independence even if they will require support throughout their life. There is also the fact that having some professional involvement can actually help by bringing new ideas, support me and help access resources that can make a difference. We just need to learn to communicate, trust and work together.

I need to let go. After almost eight weeks with my children that is hard. But for my children’s sake and my own it really is important…

To let other people get involved.

When everyone wants a piece of you

Another day. Another appointment. Another night of being woken through the night. More phone calls. More screaming. More bodily waste to clean up. More pressure. Never-ending stress.

Every parent gets stressed. Everyone needs a break at times from the 24-7 demands of raising children. But sometimes the added pressure of having children with additional support needs just becomes overwhelming when the days and nights become one, the paperwork piles up and everyone wants a piece of you.

What do you do when a professional calls you and you need to take the call yet your child needs your urgent attention at the same time (I could list any number of things they could be doing here like smearing faeces, climbing in a bath of water fully clothed, feeding the fish a tub of sudacream, eating frozen food from the freezer or escaping out of a window or door)? What do you do when you HAVE to find the time to complete urgent paperwork but your eyes can barely stay open and your mind can not focus due to exhaustion? How do you explain to a child with very limited understanding that their routine needs to change to go to yet another hospital or clinic appointment? What do you do when one professional says one thing and another disagrees and you are caught in the middle? How do you cope when mealtimes make you cry because your child just won’t eat and the other one just won’t stop eating? How do you remain at peace when your child comes home from school wearing clothes for the opposite sex because yet again he has gone through four pairs of trousers in a school day even whilst wearing nappies?

Everyone wants a piece of me.

I am expected to turn up at meetings and act professionally even when at times my heart is breaking. Crying is meant to be reserved for the privacy of your own home and only makes professionals question your mental stability if seen in public.

I am expected to follow through programmes designed by professionals who think they know my child better than me and who think I have nothing to do other than run with their latest plan.

I am expected to answer phone calls and emails in a timely, professional manner as if working in an office environment while the washing machine is spinning in the background, the children have technology at full blast (what other volume is there?) and the window cleaner is knocking my door asking for money.

I am expected to turn up to the right appointment, at the right day and time, with the right child, focussed, prepared and calm with a child who is alert, receptive and willing to participate in whatever therapy they are having today. And all this with a smile on my face and an enthusiasm for the programme.

I am expected to do homework with my children, take them to activities to ‘broaden their horizons and stimulate their interests’, give them a healthy diet and exercise, nurture their talents and spend quality time with them, when in reality we spend our evenings making chicken nuggets for tea again, watching the same programme on TV for the fiftieth time and coping with screaming children, toys and technology being thrown across the room and being physically attacked because I dared to run them a bath!

Schools expect me to jump at the first mention of ‘parent involvement’, hospitals expect me to fly my children to appointments (well they certainly don’t expect me to park given the lack of spaces they provide!), social workers expect to come to a house that is well run, clean, yet homely and comfortable, and my children need me to hold them, love them and help them all the time.

Yesterday I had one meal. It was one of those days. And the fact is I am not alone. There are so many parents in the same situation. Living with stress that is incredibly high, balancing meetings, appointments, therapies, professionals, children and the demands of running a home whist caring 24/7. Because despite the volume of people involved with my children it will still be me tonight who cooks them both tea, has clean clothes for them to wear to school tomorrow, reads them the bedtime story and kisses them goodnight. It will still be me who lies with them through the night while they cough or cry or scream.

It is me who knows them, protects them, loves them.

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Everyone wants a piece of me. But these two have a piece that no-one else can ever have. They have my heart. Every other piece of me can just wait while I take a moment to hold them. The phone can keep ringing, the post can wait a moment and the emails can stay unread just a little while longer. Whoever else wants or needs me these two always come first.

Because it never ends

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I woke up this morning. Once again it was far too early. One again the alarm clock never got a chance to ring as screaming became my wake up call. My mornings, like so much of my life, are very predictable.

In a few weeks it will mark six years of it being like this. I thought children were supposed to sleep through the night at some stage?

I guess that is one of the things about my children having special needs. The early waking never ends.

So to stop the screaming I dress him. In the exact same things he wore the day before. So it may be a school day but it really doesn’t matter because he wears the same jumper whatever day of the week it is. Sometimes I can shrug that off, laugh at it, even smile at the predictability of it, but other times it gets to me deep inside. We’ve been doing the jumper thing since August 2013. It is one of the hundreds of things we are ‘working on’ just now but getting nowhere. It just seems relentless. And sometimes pointless.

On a positive he has still been saying his first word ‘on’ that we spent an entire week learning last week at half term. It still isn’t fully pronounced but he is trying. And with massive prompts he is using it for the DVD player, the iPad, and his jumper. But like everything, it is all consuming, all encompassing; exhausting. I can’t let it go because if I just do things without having him try and talk I will be training him that there is no need to speak; no reason to communicate. So now we have started it has to continue. And if we manage to, by some miracle, add in a new word, it will be the same again. We HAVE to take every opportunity we can to help him. It’s just sometimes I would like a break from it all.

We’ve had some problems with the national oral health programme. Not surprising when the simple task of daily teeth brushing is a battle for both children. So now both children have to attend a specialist dentist every six weeks for ‘familiarisation and treatment’. For one of them that means dragging him away from the lift in the waiting room every six weeks. And sometimes that is just another battle that never ends.

It just adds to the myriad of appointments we have anyway; Eye clinics, paediatricians, clinics, home visits, school meetings, training courses, genetics, opticians, and regular GP visits. And unless we want them to have hair like Samson then we have six weekly hairdressers visits too. For most of these we are still struggling to get past the lifts and the automatic doors. Sometimes I could punch the person who invented such things.

I know, I know, this is my life, and I need to get on with it. Lots of folk have it worse. I know that. And I am not depressed. In actual fact I had fun tickling my son and watching lifts with him on his iPad at 4:30am.

It’s just that knowing that this is for life: Autism, genetic conditions, learning difficulties, neurofibromatosis type 1, developmental delay. They are relentless. They put stress on families and make everything seem massive. They add strain to marriages and test the patience of saints. They require more energy than the national grid can provide. They can’t be cured. I can’t walk away.

Forgive me for blogging in a negative way. Please understand I am not feeling sorry for myself. I am exhausted. I am surrounded by battles many of which I may never win.

I now understand why so many marriages struggle when there are children with special needs involved. I know understand why so many parents of childrenĀ like mine are on anti-depressants. I now understand why so many are begging for respite.

The reason is this: because it never ends.