Tell us about yourself, and your children who are on the spectrum.
My name is Sharon King and my husband is Richard King. We got together when I was 22 and he was 28. We fell in love very quickly and decided that we would like a family together, as we both feel strongly about family life and love children. I did not actually conceive until I was 26, and that first pregnancy ended disastrously as an ectopic, with my left fallopean tube being removed and us both feeling very depressed. Doctors warned that my future fertility could be adversely affected, so we were thrilled when, two years later, I found that I was pregnant with Rosie.
All seemed well, though Rosie was a quirky baby and toddler. We loved her to pieces, she made us laugh every day and began to speak in full sentences a little after her first birthday. A year later I was expecting again. The pregnancy seemed to go ok, but this baby didn't move or kick so much. Daisy was born in the year 2000 and shortly after her birth, doctors warned that there were some problems. At one year she was diagnosed with a rare genetic syndrome, Kabuki Syndrome, and we were warned that she may never walk or talk, and that her learning would be severely affected. Another eighteen months later and our son Lenny was born. At eighteen months we noticed that he was not meeting his developmental milestones and the autism question was brought up. He was diagnosed with classic autism just before his third birthday. We learned as much as we could about the condition, and our research begged the question, was Rosie autistic too? She was diagnosed with high functioning Asperger's at the age of 9.
What was your experience when your children were diagnosed? Is there anything that you wish you knew then that you know now?
The diagnoses were like three bombs going off in my life. I fell into a dark depression. There are many gaps in my memory from this time, because that is how the depression affected me. At the time I was unable to feel the pain of it, I felt only numb. Gradually the news of the children's conditions sank in. I began to get to know them for who they were as opposed to who I imagined they would be. I found that I loved them even more. The more I became actively involved in my new life as a Mum, the less I felt depressed. Life was good after all. I found that I could thoroughly enjoy stepping up to the many challenges that life presented each day. Far from making life hell, these challenges made me sharp, strong and resourceful. The kids were different, but they were also beautiful, funny, interesting and magical. I wish I had known from the start that a diagnosis is not the end of family life. It was the beginning of something truly wonderful for us all.
How did your family blog, My Perfectly Imperfect Family, come to be?
I have always loved to write and I found great comfort in writing about our challenges and our daily life. I dearly wanted to share my joy with the rest of the world. Whenever we met people who were interested, I enjoyed talking about the children. To me, opening up a line of communication and giving out the right information in a positive way is infinitely more preferable to a situation where people guess, make assumptions and gossip. I decided that I would take control of what information about my family went out. I began writing a column in our local newspaper which ran for four years. It was very popular and we became minor celebrities in our town. I was glad to share this good news story. When Rosie was asked to speak for TED, the organisers suggested that I write a blog for people who may be interested to know Rosie's family background. Doing this brought my views and positive ideas about autism, disability and individuality to a wider audience. I have since written a book sharing my experiences and the things that being an autism mum has taught me. I feel passionate about raising positive awareness. When I hear woe-mongers telling tales of horror and shattered lives with respect to autism, I often wonder what effect these words have on young people with autism. I refuse to speak disparagingly about my family. My children are wonderful and mean the world to me.
What resources have been most valuable to your family, especially while raising three children on the spectrum?
Daisy and Lenny's school is excellent. The children are collected at 8 a.m. and dropped off home at 4 p.m. As well as providing the children with a wonderful, stimulating and varied school-day, this also gives me a chance to put the house back together and have something of a life myself. I am able to get involved in all kinds of projects as well as supporting other young mums who are going through the diagnosis experience. I run parenting classes, write and spend many hours walking my dog. My life is really good. Daisy and Lenny also access regular respite, and this allows me to have regular nights out with my husband and friends, as well as the opportunity to do age-appropriate things with Rosie. Without the support of school and respite services, our lives would be very different. Still, though, without these supportive services, I know that we would make the best of the situation and enjoy our family life.
What advice do you have for other families affected by autism?
This is the advice that I would like to pass on to other families. Never compare yourself to anyone else. That is the road to depression and disillusionment. The grass may look greener on the other side, but every family has issues and challenges. Take the stance that you will enjoy whatever challenges come your way. Hone your resourcefulness. Even when your children have grown and flown the nest, this skill that you develop to always see the positive, to learn from each challenge and to remain adaptable will serve you well. It is my children's gift to me. They have made me into twenty times the person I could ever have been without them. 'Thanks' kids! :)
Let's hear some of your proudest moments as parents to children with autism.
Every day I am proud of my children, and I am proud of us, as a family unit for the way that we have stepped up to our challenges. Rosie's TED speech made me and her father very proud indeed, we almost dissolved in a mist of pride! But the respectful way that she treats her brother and sister, the way that she is prepared to do everything she can to make the world a more understanding place for them to grow into, the way that she cares so deeply about me and her father, these are the things that make me proud of Rosie. Daisy and Lenny's achievements may seem less remarkable by comparison, but we know what challenges that they face. The fact that Lenny is prepared to be compliant, to come back to the car when he would much rather stay in the park, or to come and shower when he would rather stay in the swimming baths; this blows me away. He doesn't necessarily understand why I am asking him to change activities. It is beyond his reasoning to see that I have a different agenda, but his straightforward love for me wins over his desire to resist. This amazes me. Daisy was never expected to walk. She has low muscle tone, tiny, inverted feet and hypermobile joints. Nobody bothered to tell Daisy that she shouldn't walk. At age five she took her first tentative steps. She grew stronger and stronger, and the fact that she was upright and mobile meant that she grew out of the life-threatening recurrent chest infections that plagued the first five years of her life. She is as a beautiful as an angel and adored by all who know her. I couldn't be more proud of her.
My husband works long hours, in a demanding job. Still though, he gets up extra early to spend time with the children on a morning. He helps me bath and dress them, and is here to say goodbye to them as they board the school bus. After a long day at work, my husband gets in late evening, and mostly volunteers to take the children out to the park or swimming for an hour, if he can see that I am tired. I meet a lot of single mums with my autism connections, I know many men do not stick around in the case of having only one child diagnosed. Not only has my husband stuck around, but he is a devoted father and husband, and gets genuine pleasure from spending time with his unusual family. Yes, I'm very proud :)