This week marked one of those milestone moments..Oh yes it was my twins fifth birthday but it was also the moment of me realising that after 5 years I finally ‘get it’. I am finally understanding, even embracing my children’s autism.
Let me show you what I mean in pictures. Because pictures say so much more than words…
November 2009 – my longed for, hoped for, prayed for twins have their very first birthday. Like all parents we want to spoil them and buy them all we can. But they had only just mastered sitting, neither of them were self feeding and neither of them had any words. Nothing to worry about. They were born a little early, there is two of them to care for and all children are different. So we bought them musical toys, activity centres, wonderful books and little cars to sit on.
They both screamed to sit and play with the hanging beads in the kitchen:
All children are like that at that age, right?
November 2010 – I long for sleep, I hope for my babies to look at me and talk to me, I pray I will one day see them walk. But I am worried. One can’t even pull herself to stand yet. So I buy them push along toys, brightly coloured building bricks and sorting toys and a ball pool to explore. 8 weeks prior we had first heard that word mentioned. You know, that ‘A’ word that would go on and define our lives. That six letter word that brings fear and tears in equal measure. One child was terrified of the ball pool and cried at all the noisy toys. The other just screamed. And screamed. And screamed. That day was the lowest I have ever been. Because something had stolen my children and I could no longer be in denial. Yes one was looking at books and babbling. But the other was lost. There are no pictures to depict that day. It is a lost day. Because my son was lost by then. And his twin sister damaged by the ‘A’ word I just couldn’t bring myself to utter. Just 7 weeks before Christmas and things were so bad we cancelled Christmas. No tree, no decorations, no presents. My children, especially my son, could not cope and therefore neither could we. Drastic? yes. Necessary? yes!
It made headline news:
It took a year for us to face the press but it was our lowest moment and everyone read about it the year later. The cuteness of playing with the kitchen beads was now a frighteneing reality. A year later when that article was printed our boy had only just started walking. And there was still no words. Curse those kitchen beads!
November 2011 – I’m still longing for sleep, hoping to hear my sons voice and praying for those first steps from him. But I am learning much more. My faith is stronger. I listen to others who have walked this path before me. The children are in nursery. But still neither asks for anything for thier birthday. But in the 365 days since the previous birthday I have watched them and I have read book after book. I have cried on the phone to the National Autistic Society. And I have an idea. It might just work…anything is worth a try. So wrapping paper is banned. Singing happy birthday is banned. Banners and balloons and anything out of the ordinary is forbidden. I buy the kids imaginative toys and games and dvd’s and books. But instead of wrapping it all I actually take everything out it’s packaging. And each child has one plastic box of toys. The boxes get hidden under the coffee table. If Isaac can’t cope it will just be like any other day. But if I can just slide that box out a little…then a little more…well who knows?
And it worked! By the end of the day he was scanning his new bus across his eyeline like it was a toy he had always had.
and Naomi finally showed some imagination with her new toy till:
I’m beginning to get it! I’m starting to live the autism life. And finally the screaming is beginning to settle. And shortly after this event I swallowed that ‘pill’ and embraced the fact my son was leaving mainstream nursery, where at 3 he was still in a baby room, and about to attend a special needs nursery. Maybe if I had taken them away from those beads two years ago…or maybe it was always there and I just wasn’t willing to see it yet?
November 2012 – Still longing for my son to talk, and my daughter to speak outside the house. Hoping that one day they might be out of nappies. Praying the world is kind to them. It is getting more obvious they are ‘different’ now they are 4. Finally both walking. Finally feeding themselves and using spoons. But still needing so much help. Both still using baby bottles and dummies. Isaac’s seizures are at an all time high. But it is time to celebrate again. And the boxes worked. So if it works we repeat it. And for the first time ever we are actually get asked for a toy. The obsessions have begun. Isaac loved the idea of the box this year. But a year has passed. And he has forgotten he has to take the toys out of the box. So he stood at that box and smiled and flapped and walked around it:
barefoot. Oh yes, barefoot. Always. I wasn’t even sure what shoe size he was. He was diagnosed by now and I began to choose my battles. So barefoot he was. But I still wasn’t quite getting it. Some of those toys were given away just weeks later. No straight lines. Not sensory enough. I should have stuck to his beloved sensory toys. But there was still a part of me wanting to fight that autism.
And at 4 the train obsession started with his twin sister:
and the lining up:
I think it might have started with those straight lines of those kitchen beads you know!
November 2013 – longing for others to understand my beautiful children. Hoping there is more awareness and acceptance of autism as each year passes. Praying for those amazing people who are doing wonderful things working with my children and others like them. I have watched the children so much. I have interacted with them. I have read the books again. And attended courses. And got so many professionals on board there wasn’t enough room to list them on thier disability living allowance forms. I actually fought to get Isaac into a special needs school. I was willing to blog about it. I was happy to admit his needs were severe and complex if it ensured those needs were met in the right environment. I get it. I accept Isaac might not speak. I have covered my kitchen cupboards in photographs of his favourite snacks. And he brings those pictures to me. I have limitted my language. I wait for him to process what I am saying. I use sensory toys to motivate. We allow him to wear nothing but red jumpers because that is what he wants to wear. Autism is no longer something to be feared. It is something I embrace. I accept he needs a little melatonin to help him sleep. I admit Naomi needs medicine to help her poo. I still change nappies. And use bottles and dummies. But I know things are progressing. And if birthdays are still a box each with all the toys out of packaging then so be it. We can now sing happy birthday quietly. We are happy to buy the children what they want however different that may be.
So Naomi asked for a cuddly number 5 and a train house. So we searched and we found them for her. And number 5 has never left her hands since:
and Isaac got a Peppa Pig annual from two years ago and even takes it to bed. He doesn’t know it isn’t up-to-date. But he knows it is his…and that is progress.
We had a very contented 5th birthday. I sat with Isaac. We had one-to-one interaction and he learnt how to put the marble in his new marble run much to his delight. I coloured in with Naomi. And played trains with her. And watched numberjacks over and over. I wasn’t sad to purchase toddler toys for a 5 year old, or embarrased that my son loved the feel of his sisters barbie dolls dresses. And it didn’t surprise me when Naomi gave me one of her toys back and told me she couldn’t have it yet. Because she had been working for that £5 toy for three weeks sitting on the potty having stories and she still had 2 squares of track to move her trains before they all got home. And the rules are you don’t get the toy until you have completed the reward chart. Oh yeah. The rules of autism. How could I forget?
The kids have moved on so much in 5 years. But so have I. And you know what? I am actually thinking of buying the kids some wooden hanging beads just like the ones they loved back on thier first birthday. They might sit under them and play. They would certainly enjoy the noise of them and the straight lines and the shadows each little bit makes and the way they move, the feel of the shapes, the way they hang. There is no eye contact involved. No social interaction needed. No words needed. Just them being them.
It is autism.
And I finally get it.