If you burst my bubble I will cry

So it’s the summer holidays here and all the schools are off. Except my children are still going to nursery as usual. They need their routine, I need the break. And it keeps all our sanity intact.

But other than nursery we are staying away from people and places as much as possible. We haven’t been swimming, or soft play or to any of our usual places much (unless they are autism related) since the schools broke up. Everywhere is busy, noisy, and full of ‘normal’ children. The kids can’t cope with the noise or the amount of people and I can’t cope with my little bubble of life being burst by seeing ‘normal’ children and families or else I cry.

Seeing children climbing soft play equipment and not chewing the wire safety surround. Seeing all the children in church sing songs on the stage and doing all the actions without thought. Watching children in parks on see-saws and roundabouts laughing and playing with friends. It is all too much of a contrast to the life my family is leading and it bursts my little bubble and makes me cry. So for now, the four of us just get on with appointments, nursery, family and playing in the garden. And attending things that are special needs specific only. It’s all any of us can cope with so it is as it is.

If I take my kids to soft play one refuses to ever go on the equipment and instead sits at the table with mum and dad watching all the others. She can’t climb or crawl and is frightened of other kids. Add the fact she hates walking without shoes on due to her sensory preferences and you can pretty much forget soft play. The other can climb but has no awareness of other kids so pushes them out his way, bites them or climbs over them. Then he forms a circuit on the equipment and simply repeats the same circle over and over and over and over, only stopping to chew the wire safety surround, stare into space for minutes at a time or flap his hands and arms. He has no interest in the other children and neither looks at them nor cares what they are doing. If they block him he squeals at them until they move. He sticks out like a sore thumb. He gets called names, laughed at, picked on and pushed. Young children bursting my bubble and making me cry. So the only soft play we go to now is an autism group one. Even there he is different. But so are all the other kids. And most of the other kids have little interest in what he is doing. And all the parents think it is there child when a tannoy says one of the children is running around naked!

So the only non-autistic place we go to every week is church. And right now church is very very hard. They keep bursting my bubble and making me cry. They don’t mean to but the older my children get the more obvious their disabilities have become. Both my children should have moved on from creche to sunday school 18 months ago but both are still in creche with the babies. In Sunday school you sit down and listen to stories, you do crafts and play games and sing songs. Isaac can not talk or sing, or play games or hold a pencil, or follow instructions, or sit down long enough to hear a story. So Sunday school is totally unsuitable. Naomi says the singing is too loud it hurts her ears, she refuses to talk or join in games and is highly anxious and upset all the time. And she isn’t toilet trained. But the other children in the church keep growing up and moving on to Sunday school and my bubble keeps bursting! Two weeks ago all the sunday school children were up on the stage at church singing songs and doing actions and praising God. Children a year and a half younger than my twins singing to a crowd of almost 200 people, happy and excited to be showing what they have been practicing for weeks. I was so glad that Isaac was having a very bad day (in fact a very bad weekend if truth be told) and we could get our bags and go home. My bubble was well and truly burst that morning. I just could not pretend my children were normal any more. They should have been up on that stage with the other children. But I don’t know if either of them ever will.

It is exactly the same when we go to parks. Isaac only wants to find a bush to run along side and look at out the corner of his eyes. And Naomi only goes on the swing. The baby one at that. She is afraid to go on a seesaw, gets dizzy on a roundabout, thinks slides are too high and isn’t able to climb on anything. So pretty pointless taking her to the park then! And if the other children run about she thinks they will knock her over or bully her. Meanwhile her brother has escaped somewhere. No, the garden is a much safer place to be!

Being a parent of special needs children is very isolating at times. Even more so when everywhere is noisy and busy and there are queues wherever you go. But one advantage of doing things with just the four of us is that I can let my children be who they are without people staring, or children laughing at them, or others complaining. They are accepted and loved and made to feel special for what they can do and not excluded for what they can’t do. They need to be in that bubble at times too. Because sadly they will be reminded of their disabilities all too often from the world. For my daughter who has high anxiety and low self esteem already spending a summer in a bubble surrounded by only family, friends, or other special needs families will do her far more good than harm. She needs to hear encouragement, friendly voices, cheering, laughter, love and support. Her mainstream nursery provide this, creche at church provides this and family and friends give her this. But busy soft plays and parks and sunday schools full of children all out of nappies and running around just make her feel inadequate and unable. It bursts her bubble and makes her cry.

And as for Isaac, as long as he gets to run alongside a hedge or fence back and forth as often as he wants, as long as he gets fed often, has peppa pig to watch and lots of plastic toy food to chew on he will be fine. He has no concept of holidays anyway and is happy with his shoes and socks off all day and the nursery bus coming as usual every morning. His world is simple. He isn’t aware he is different. He just needs his routine like any other day. Don’t burst his bubble by saying it is the holidays and nursery is off. You will only make him cry.

So we’re staying in our wee autism bubble for now. Hallelujah for nursery through the summer. What was that? Summer holidays finish in 6 weeks and my boys starts school? No!!! What did I tell you…don’t burst my bubble or I will cry!

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4 thoughts on “If you burst my bubble I will cry

  1. It hurts. I felt exactly the same way in the Church environment. It was hard to see what other children could do so easily. It might well get better with time My son is now 15 and has finally joined the Youth group. The Church have learned along the way and they are able to include him but it’s been a steep learning curve.

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  2. You must keep believing things will get better, it will be difficult but you are strong. I know you can do it.

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  3. Mirriam you really are an amazing mummy,so strong.your blogs are amazing and straight from your heart.I always look forward to reading them,and your twins are beautiful children.I do know how you feel when people stare it happens with my gorgeous girl most days and as she gets older shes noticing the stares but thats just ignorant people.xx

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  4. Have the faith Miriam and hold onto that Faith that things will change. God is able to do exceedingly more that we can ask or think. He will bring all things to the improvement of both children. They will develop into brave heroic children able to surprise mum and dad. Love you all loads.

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