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:
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:
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.
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.