Work I've had published

Mother's Wories was published in The Autism File 2010

My son, Charles is now ten years old and attends a mainstream school for four and a half days a week and half a day at a special school. He can now talk the hind leg off a donkey and he’s doing well in most of his subjects. However the beginning part of his life was very stressful and went in a blur of battles with the authorities over entitlements, hospital appointments, form filling and appropriate schools.  Not to mention the many levels of anxiety I felt, the despair, the loneliness and guilt… for what, I wasn’t quite sure! But throughout it all I have meet some very good people and have experienced some wonderful moments in my son’s life. This story is about how one of the after school activities we joined helped me move forward and opened a new world in social skills for Charles. 

MOTHER’S WORRIES

     It was our doctor that suggested that we enroll Charles in an out of school activity to help with his social skills. So we decided to try our local scouts and beavers group who said they were quite prepared to help. Even though I was worried about the other children making fun of him I decided to give it a bash.

      I stayed for a few weeks in a back room while the leaders got to know him and to make sure he settled in okay. When the time was right I was told I could go home for the hour due to Charles coping well and him enjoying his freedom. The thing was it became difficult for me to let go and leave him there while I went home. For weeks I would leave the building and just sit in the car for the whole hour making sure the leaders were keeping an eye on him. I questioned them about the security of the building, would he be able to escape? I told them if they went on a trip then at all times someone must hold his hand because if something caught Charles eye he’d be off and there would be no stopping him. I felt I was getting paranoid and I had started to notice frowns from other unsympathetic mothers.

      After a few weeks of Charles settling in the leader of the Beavers club asked me whether he could take part in a dancing all singing performance onstage to do with the East Birmingham, Gang Show. I was informed there would be lots of rehearsals and I was reassured that he would be taken care of and he would probably be able to gain great deal from it. Providing of course Charles wanted to take part. Again it though me in a spin and I was mortified and refused out right. I was so angry they’d even suggested it. I raised all my concerns about the place being absolutely packed with people and that there’d be too much noise for him to cope with. I had visions of him running on stage like a whirl wind and careering through the stage props. That’s if of course on the night of the performance they actually got him on stage! And if they did what happens if he just throws a wobbly in front of all those people. I felt sick! I just said no and went home . Charles was upset that he couldn’t do the show but I tried to explain that it would be for the best. 

      Luckily for both of us the leaders didn’t give up and sent one of their chiefs to have a word with me and explained that they had a lot of experience with special needs children. He explained exactly what would happen on the night and of how long they would be on stage and who would be with Charles throughout the evening. He finally convinced me to give my son a chance to experience the joy of being with other children as a team on stage and if for one minute Charles changed his mind or it looked remotely possible he couldn’t cope or as I’d put it (threw a wobbly) then I was assured he wouldn’t have to do it.

  

      The evening came and off Charles trotted, (well actually, they trotted Charles raced!) with all the other children to get ready for the performance. I sat in the coffee area while all the other parents gathered and chatted excitedly before being called through to the great hall. By now my throat was tightening, my heart was pounding and beads of sweat trickled off my brow, I was half regretting what I’d done. Surely this should be fun, I thought, Isn’t this where moms are supposed to feel proud? Is this the way the rest of our life together will be, me constantly being on tenterhooks for him. Why was I feeling like this, why was all this happening to us?   

      The curtains opened and the tension in the hall was electrifying, everyone started to

clap.  I felt at that very moment like the walls were closing in on me, I wanted to make a run for it, I think I might have done if I could have got past all the mountain of legs. It was too late. The music started and first on stage were the Scouts singing, then someone dressed as Henry VIII reciting a monolog. It felt like an entirety before the beavers were introduced. Eventually one by one they came on, each dressed as Tigger from Winnie the Pooh. Each one bouncing across the stage with homemade spring tails and their faces painted orange and black blasting out, ‘The Wonderful Thing about Tigers,’…and there stood my Charles full of enthusiasm, singing his little heart out, his face beaming while straining his neck to see if he could see me in the crowd. He held tightly onto one of the leaders hands and looked straight up into his face for praise…and got it. The children continued to bounce around the stage twice more before bouncing their way off again.

     

      ” See, he was fine,” a voice whispered in my ear.

  

      Tears streamed down my face. How proud was I! I was worn out from all the excitement but clapped as loud as the next person feeling as though a weight had been lifted. For me, this evening had given me hope and faith and made me realize that with the right kind of people anything’s possible!

I wrote a poem that summed the night up nicely for me.

My child stands on stage

ready and eager to sing

to dance, bounce and jump

before applauding crowds

This moment lasts forever

The day my life changed direction was published in autismmatters, Autism West Midlands newsletter.Summer 2010

THE DAY MY LIFE CHANGED DIRECTION

After my second son was born everything seemed to go according to plan. It was when he was approaching his third birthday that I became concerned about him. He was a “late walker” but once started he began racing from room to room; from toy to toy ; and making loud excitable noises whilst removing any clothes I had just put on him.

     His speech or in his case lack of it was definitely beyond most three year olds, he would use grunting sounds to get my attention; or use words like “ju, ju” for juice while thrusting his cup in my hand, that was about it.

     I thought that once he started at Playgroup, mixing with other children, things would be okay. It didn’t quite work out. One thing I did notice about him was that his eyes looked dark and empty. He looked confused and unsure.

     Staff at the Playgroup questioned his lack of speech and co-ordination and asked whether he was deaf. They were concerned about his behaviour and soon cut his hours from three to one hour a day. In desperation I rang the children’s clinic for advice.

     The local hospital sent two clinical co-ordinators to assess him and within twenty minutes of observing Charles they agreed there were some characteristic signs of autism.

     The word Autism went round and round in my head, tears streamed down my face. I felt physically sick. They continued to talk, but I could only see mouths moving. Questions filled my mind, why, how will we cope, will he ever marry, drive, or lead an independent life? There were no immediate answers!

     My days just went in a blur of battles with the authorities over entitlements, hospital appointments, form filling and sorting out an appropriate school.

     However, from the age of five he did attend a special needs school full time and within two years a sparkle had returned to his eyes. He was able to read and write his name. He was then slowly introduced to a mainstream school for a couple days a week out of the five. Now at the age of eleven years attends there for four and a half days.

     I know it hasn't been easy for him and at times fear for him has completely consumed me. But from that very dark place where my son once was he has blossomed into a funny, bright, intelligent little boy. I have seen him taking part in singing, dancing, and sports, things I thought at the time we could have only dreamed about him doing.

     We now have another great challenge - transition to secondary school!