It doesn’t take much

Life, for me, is a very delicate balance.

The balance between meeting the needs of my very different 5 year old twins. The balance between being a good mum and also being a good wife. The balance between keeping my house clean and tidy for the many and varied professionals who visit but also allowing my children to be free to play and be at home. The balance between trying to move my children’s development onwards but also being very aware of thier need for sameness and the huge anxiety that change brings. The balance between encouraging my son to speak when he has no language but also facilitating him by providing a means to communicate that does not involve speech. The balance between wanting to teach my children social rules and conforming to social norms but also allowing them to be the unique autistic individuals God made them to be.

My selfish desires for quality photos of my children on the wall, to celebrate Christmas as much as possible, to see them in nativity plays and shows and to take them to interesting and educational places like museums and castles, to go out for family meals sometimes and visit family. But balancing that with the fact neither of them do social activities, they have serious sensory issues that make going out a challenge,what is interesting to me is maybe of no relevance to a 5 year old who is really just a 1 year old developmentally, accessing places with a disability buggy is a major challenge, and sometimes the best thing for everyone is just the safe haven of home.

It’s a fine balance.

And it doesn’t take much…to upset that balance.

Somedays we get it right. And others we don’t. For example:

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Since he started school in August and started wearing a red jumper as part of his uniform Isaac has insisted he wears red jumpers every day. And every weekend I try and break some of this rigidity by once again attempting to put on other clothes. He screams, bites, cries and becomes very distraught until the battle becomes more than it needs to be. Sometimes as a parent you need to be willing to lose the battle in order to win the war. So the red jumper goes back on.

It doesn’t take much …for calm to be restored.

But some days you really would prefer he wore something else. Like the day I decided to try and take the children and my mum to a photo shoot. A huge risk but something that was a dream for me for years. But also a major hurdle for the children. That delicate balance between my desires as a mum and thier needs as special children. Compromise..we will book a photographer used to dealing with autistic children and take items with us the children really love. So Elmo DVD and DVD player, wooden farm set and Naomi’s favourite cuddle toy of the day, and biscuits! We only lasted 30 minutes in the studio but I got my hearts desire:

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It doesn’t take much…to make my dream come true.

The balance between both dad and myself longing to attend Isaac’s first ever school parents night with the fact that both children would be upset at the change of routine. It would take a military operation to prepare them for the fact gran would be here at dinner time and the need to have a dinner both children and gran would eat, prepared and ready to serve, prior to Isaac having a meltdown because he sees someone cooking and Naomi screaming ‘I don’t like that!’ Oh and not fogetting a 26 mile round journey just for a 20 minute meeting with his class teacher. But the report and pictures and video clips we saw were worth all the effort it took.

It doesn’t take much…to make me a very proud mum.

When we were out at a local shopping centre and for the first time Naomi asked to see Santa. To see her overcome her anxiety and sensory issues to walk into a dark grotto and talk to a stranger. And to hear her being asked a question I knew she may not feel confortable answering. ‘What would you like me to bring you for Christmas Naomi?’ I gulped, held my breath and waited to see how she would respond. “A toothbrush please!”

It doesn’t take much…to please a child.

When we finally got a letter in the post with details of a proposed respite plan to start in the new year. Once again we had to break the children’s routine of going to church every Sunday to take them to a new centre to meet new people who hopefully will look after them both for a few hours once a fortnight starting next month. I could have found myself dealing with two anxious, upset and screaming children. Instead Isaac took great delight in exploring the windows of the room and examining close up a mural on the wall. And Naomi sat and drew a picture with beautifully lined up ordered pencils. While I filled in forms in duplicate giving every little detail about my children and life imaginable. It isn’t easy admitting you need a break. It isn’t easy dealing with disability times 2, 24 hours a day, whilst trying to keep your marriage strong and your bank balance healthy. Knowing there is a chance of a little break next year spurs me on though.

It doesn’t take much…to give me hope.

Naomi being given the nursery teddy bear to bring home and look after for a day. A box full of cuddly toys already but there is something wonderful and special about this nursery bear and all that they sent home with it. So ‘Sarah’ came out for lunch with us because her brother was having a school trip today.

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It doesn’t take much…to make a child feel special.

Recieving an e-mail from Romania from someone who reads my blog. Knowing someone has been encouraged. Knowing you might have got the balance of humour, reality and the sheer joy of raising two wonderful children with special needs. Just knowing that someone cares. Realising that there are other families facing the same delicate balance of raising special children in a society that does not always celebrate them. Knowing you are not alone. Appreciating the time and effort it took someone else to contact you.

It doesn’t take much…to touch another life.

Life is a very delicate balance for us all. Raising special needs children just makes that balance a little harder to achieve some days.

Focussing on the little things

One of the many ironies about having children with autism is the fact I have so many big things to worry about as a parent but they are way more concerned with the details of the little things! They worry about the  feel of things, how the straight lines look from every angle imaginable, how the wheels spin, how things look lined up, how a certain part of the dvd sounds, what a certain piece of food tastes like or how some bubbles stay as bubbles when they land on water. While I worry about will they ever get out of nappies, will Isaac ever learn to speak, will we ever get rid of the dummies and the baby bottles, will they ever have friends?

There are so many ‘big’ things I could dwell on right now. Concerns about the fact the twins are almost 5 and neither is out of nappies, concerns about where my daughter will go to school next year, concerns about whether my son will ever talk. While so many parents around the world are beginning to think of Christmas and Halloween and fireworks or Thanksgiving, my focus is still on getting through another day. I could easily become overwhelmed by thoughts of how I get my son to stop eating his clothes when all 9 of his school jumpers now have cuffs that look like the jumper has been mauled by a wild animal. I could be overwhelmed with thoughts of how I get my children to ever have friends, or simply initiate contact with another child. Or how I prevent my son from wandering off every time we are out, or screaming when traffic lights are on stop, or biting himself. It could all just become too much so easily.

So I’m focussing on the little things. Just exactly like my children do! I’m allowing them to teach me the joys of simply taking a day at a time and enjoying life. My son’s only thoughts of Christmas so far is the joy of sitting in a ball pool feeling tinsel.

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His idea of toilet training is tearing up the toilet roll into little bits and having fun with it:

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He is delightfully happy. He isn’t worrying about not being able to speak, or still being in nappies at almost 5. He has no concept of the fact the school he attends is for children with severe learning difficulties. All he knows is the jumpers taste great! And they feed him lunch and he gets to go swimming and play outside and someone is there to help him when he falls over. Life for him is simple. But that simplicity gives me hope.

Because in all his struggles, in all his delay and in all the complexity of his needs he is showing incredible progress. Which when I focussed on the ‘big’ things I hadn’t really noticed how the little things were really improving. Like the day he came home from school and saw his sister playing with her train set.

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And this was what he always did to it:

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That was no little thing to his twin sister! It doesn’t matter that both my twins have autism in moments like this. Autism might explain why one likes everything ‘just so’ and set up so lovely and the other likes the sensory play of knocking the track pieces together. But even without autism, these are two children who will not always agree or want to play games the same way. And any parent with more than one child will know the difficulties in balancing both children’s needs at times. I could easily have felt despair at this, fearing my daughter will never get to trust another child playing beside her, fearing my son will never learn to not destroy and take everything apart, fearing my children will never know the joys of playing together. Those ‘big’ worries overtaking me once again. All I could do was distract one child and hope for the best. Another day. Another compromise. Another prayer said.

But then the following day when he came home from school and once again the beloved train set was set up..

He climbed off the sofa, he knelt on the floor…and he pushed a train on the track for the first time ever!!!

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And that’s when a little thing really does become a BIG thing! After 5 long years of solitary sensory play, just enjoying the feel and touch of things and seeing how they look scanned across his eye line. After over a year of watching his sister playing with the same train set, he finally worked out how to play with it appropriately! I could have been so focused on cooking a meal, or cleaning up, or endless other tasks us mums seem to have to do on a daily basis. But I decided to focus on the little things and caught a beautiful moment in time.

A few days later I caught him again with another of his sister’s toys (because he has not seen his own toys being played ‘properly’ he has no idea how they should be played with, so is learning play through watching his sister play with her things) picking up a little person and putting them down the water slide:

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A few weeks ago it was questionable whether Isaac was even able to see the pieces in a toy so delicate and small. But he has once again proved us so wrong. He even knew the difference between a plastic tree and a plastic person!

Meanwhile his beautiful sister is proving that autism will not stop her either as she set about painting so wonderfully within the lines:

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and then brought tears to my eyes when she showed me something she had written:

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This is getting dated and framed and treasured. Aged 4 years, 11 months and 6 days, my beautiful and ever so clever daughter wrote her name for the first time!

A little piece of writing. But a massive milestone.

When I worry about their other milestones, when I have serious concerns about what the future holds for them, when I get stressed about whether I can be all they need me to be to help them be the best they can be, when the big things become all too consuming, I am going to look at the little details just like my children do. I am going to hold this first piece of writing by my daughter, treasure the photo of my son pushing a little train on a track for the first time, dwell on the little noises my son makes daily that one day may turn to words. And enjoy life just like they do.

And leave the rest of the big things to God.

There is something to be said about focussing on the little things and letting God take care of the big things.  And not worrying.

“Therefore, do not worry about tomorrow, for tomorrow will worry about itself.Each day has enough trouble of its own.” Matt 6:34

Remind me of that one when we are in the midst of toilet training later this week or stressing over what school Naomi should go to next year please!

What is there to worry about when you have trains to play with eh!

http://www.youtube.com/watch?v=IpeU612ku-Q&feature=youtu.be