I’ve been thinking a lot this week about the communities I immerse myself in and build around myself and Melon. This post is really a series of little reflections on some of those communities that Melon and me are part of: the support we get from them; what they mean to us; the way they have changed us. It is also an observation on someone in my life – an NT Mom – who has been very good at building a community around herself and her young family
We are part of a church community. I’ve been going to our Local anglican church pretty much weekly since I was pregnant with Melon. I started going when we moved to this area, because I wanted to build some social and community links, and re-connect with my faith after a long break from attending church. The children come with me every time and are part of that community too.
It’s the Parish Christmas fair this weekend. I had set aside a big full of Melon’s clothes that she’d grown out of. I found them in the bottom of the wardrobe the other day when Melon climbed in there and used them to build herself some kind of a nest (ironic really, because a lot of them were clothes she had never worn, still with the labels, because she didn’t like their texture). I was going to give them to church to be sold on the parish stall, but last year when I did the same, one of our Sunday school leaders took the whole bag for her little granddaughter and made a handsome donation to church funds. So this year, I just took the bag straight to her, refused money and just told her to make a donation to church again if she felt she wanted to. The bag was quite heavy, and the lady is in her 70’s, so I gave her a lift home with them.
Now this lady (I’ll call her Anne) helps in Sunday school every week. Sunday school is a little community within church that I am not part of. It’s Melon’s community. Anne’s not the main group leader, she’s the assistant, and she spends a lot of time with Melon, helping her to focus on the story they read out, and encouraging her to complete the drawing and colouring activities. Anne has worked on a weekly basis with Melon for well over 2 years. But it wasn’t until I gave her that lift and she chatted to me about her life, and about Melon, that I realised just how much she cares about my little girl, about how concerned she is for her well-being, about how much thought she puts into the time she spends with Melon in Sunday school beyond the way she does for any other child, how she supports Melon to interact with the other Sunday school children, and about how rewarding she finds this. Melon loves Anne, and happily goes to her in the Sunday school. Autism is part of Melon, it is part of her needs, part of her charm. It has drawn Anne closer to Melon, closer to the Sunday school community. And they both benefit from that.
Anne’s husband goes to a different church, 6 miles away. It’s Anglican like our church, but he prefers the style of service they offer. That aspect of worship is really important to him.
But we have other priorities.
For me, attending our local Church helps to embed us within our local community. Melon’s school is linked to our Church. A lot of people start attending the Church to increase their chances of getting accepted to the school, so there are lots of children at the services. This meant that Melon had met lots of her classmates, sat in Sunday school with them, gone up to recieve Blessings with them, and was known to their parents even before she started school. This preparation has been a really important step in helping Melon settle at school, and to be understood and accepted by her peers. The other children are curious about Melon. They talk to their parents, who in turn speak to me. They try to learn and understand, and they pass their understanding and acceptance of Melon onto their own children.
Our church is a warm, welcoming community where Melon has learned that even outside her family she is accepted for who she is, and can make people love her. I cannot imagine a more positive, important thing for her to learn.
When Melon started school, I made a conscious decision that I was just going to be upfront with regards to her being Autistic. I wasn’t ashamed or embarassed about it, and I know from experience that sometimes people are afraid or embarrassed to ask questions if they aren’t sure how you’re going to respond. I didn’t want people to start speculating amongst themselves about Melon, so I went with “shoot from the hip”. After a couple of weeks, I began to doubt my tactics a bit. I got a couple of odd looks from people. I thought they were concerned and worried about an Autistic child being in mainstream school, I panicked and thought that my tactic had backfired, and that people would try to draw their children away from Melon.
I was wrong. The “odd looks” turned out to be based on surprise that I didn’t seem more upset, or reticent when talking about Autism. The odd looks quickly turned to relief that awkward questions about Melon’s differences weren’t going to need to be needed. Then the relief turned to something very important; people approach me to ask about Melon – her behaviour, our experiences with diagnosis, our feelings about the school and professionals. What also happened is that people who have concerns about their own children have begun to talk to me about their fears, anxieties, their experiences and challenges with getting support and diagnosis for their children. And in opening up to each other we are becoming stronger and more confident, we are all starting to draw in those other playground parents who have similar issues, and we are gently starting to promote awareness. From fearing I would be alone on “special needs island” in the playground, we are slowly starting to form a little peninsula of parents who want to learn to support their children, and parents of NT kids who want to learn more in order to help their friends, and to help their child accept children with different needs more easily. It is a little community that is strengthening everyday.
Facebook Autism Community
Followers of this blog will know that I was a ghost in the Facebook Autism page community from before I began my own blog and page. I started following a few pages in early February this year. They were my sanctuary, my hand to hold, my place to laugh at the stuff I was scared of and so to make it less scary. I didn’t comment or post, I didn’t feel comfortable to as Melon wasn’t officially diagnosed, I wish now that I had. But I read and I drew in support, I formed opinions, I felt became less isolated, I became more positive.
Since I set up my own Facebook page 6 weeks ago, a few things that people have said to me about this community have stuck out in my mind:
“Its a community that saves my sanity on a regular basis”
“Our son was diagnosed last month… Seeing the link to your page was serendipitous.”
“Welcome to the fight for ya like a sister Autism Facebook community”
“I don’t know anyone else near me who is in my situation”
“It’s the only time I can speak to people who I know will actually “get it””
“It’s so good to speak to people who can finally relate to what I’m going through”
People who are part of this community are proud of it, they celebrate each other’s triumphs and mourn each others sorrows. In the last week, various technical issues with Facebook have meant that people have had trouble being able to see information from other pages in the way that they usually do, and have also struggled to get their own stuff seen by the people who follow their pages. Some people were frustrated, some were accepting of the fact that every now and then facebook, like life, just makes things more difficult. But many of the admins who run smaller pages like mine were anxious, concerned, scared even. They weren’t just being dramatic. The prospect of not being able to reach out, to share and to hear the stories of others – these things that help them feel less alone on their journey – was frightening for some people.
It really bought home to me that behind each page is the story of someone’s child and family, the story of someone’s struggle. The pages are people’s efforts to reach out for help, to give back support, to spread awareness, to celebrate their children, to share and promote the good work of others. Through our pages we share in the story of each others’ lives, smile at the triumphs and mourn the difficult periods. We learn and grow stronger together. It made me realise again just how important the online Autism community is at a level beyond information/awareness. We are watching each other’s children grow, develop, struggle, succeed. And for some of us that connection is a huge part of our everyday lives and our ability to cope with the situations we find ourselves in.
I would never have started running a facebook page if Melon had been NT. I would never have begun reading blogs. I would never have begun to connect with people via the internet. I would never have begun to write again, to learn about creating graphics and to challenge my own fear of technology. Autism has made me part of this community, a community which has become very special to me very quickly.
A person who builds
This reflection involves a friend. I’ve talked about her before. I’ll call her Marie. I met Marie through pregnancy yoga, our babies were born on the same day, we’ve been close ever since then. I allowed Autism to push me away from her a bit when I was still frightened and didn’t understand it. I shouldn’t have. She’s fantastic and has made a real effort to try and learn about what autism means for us, for Melon and for our lives. She even flings terminology like NT into everyday conversation. Go Marie.
But this reflection isn’t about our friendship, or Autism. It’s an observation of someone who has beautifully and tirelessly constructed a community for her children that takes the place of key family members who are absent from her children’s lives. Marie’s parents are both dead. They died the same year my dad did. They died quite suddenly within 5 months of each other. Marie was 20. Her boys will never meet their Grandparents. Marie’s Husband also lost his Mom before the boys were born. His father lives abroad and is a distant figure in their lives.
Marie could literally talk you to death. I have never seen her lost for words, or struggle to strike up conversation with anyone. I’m not even sure I have ever seen her pause for breath, but I’ll accept that’s physiologically impossible for her not to, and move on. She has a knack of reaching out, putting people at their ease, finding the funny in her observations of life. She’s never afraid to tell you what she thinks and she has a truly massive heart. Along with her husband, Marie draws friends into the circle of her family, and weaves them into the everyday fabric of her children’s lives. They have built up a close and supportive network of friends with children, they holiday together, treat each other’s houses as second homes and are there for each other at the drop of a hat when crises emerge. Marie has the same relationship with her friends that I do with Mine and Hubs immediate family.
Marie isn’t an Autism Mom, both her boys are NT, but she is a true Momma Bear. She is aware of her children’s faults, and is the first to address them, but she champions and fights for her children at every opportunity. She is always there to celebrate their progress. Sometimes, quite unjustly, we Autism Mom’s can struggle to be around parents who champion thier NT Children. Sometimes, when we are adjusting to the implications of an Autism diagnosis for our childrens lives, it can be hard to listen to a parent praise their NT children’s progress without it hurting. I’ve seen some people use the phrase “perfect little NT snowflakes”. If anyone used that in relation to Marie and her children I’d throw eggs at them. And here is why – There is a saying somewhere that goes “Everyone you meet is fighting some kind of battle. Be kind” Marie fights so hard for her children, praises them so much, integrates her friends so closely within their lives because she is re-creating an extended unconditionally loving family that her boys would not otherwise have. She is trying to deliver the love of three absent Grandparents as well as her own. Her boys are growing up within the embrace of this suportive and loving community that Marie has built around them. A community that will nurture and guide them as they get older. She has done, and continues to do, an amazing job.
My last little reflection, in the spirit of it being Thanksgiving over the pond in the USA, is to list all the reasons that I am grateful that Autism is part of my life. looking for the positive minimises the negatives, for me anyway. Any time in the future that I find myself struggling, I’m going to come back and read it
Autism has drawn us to people. It has drawn people to us. It has helped us build communities that love and support us.
Autism has strengthened friendships, and helped make new ones.
Autism has bought to an end some friendships that had run their course.
Autism acts as a kind of filter that keeps out of our lives those people who we maybe don’t need after all. It has shown us that we can live and flourish without them, their judgements and their validation.
Autism has made me more creative and has made me challenge myself.
Autism has made me into a student, a teacher and an advocate.
Autism has made me patient. It has made me begin to see the world through Melon’s rainbow glasses.
Autism brings me to my knees, and then makes me strong. It has made me into a fighter.
Autism has made me appreciate the little, wonderful things in life, and it has made me let go of some things that just weren’t so important after all.
Autism is part of my daughter. It’s made her the wonderful, intriguing, curious, beautiful little girl that she is.
She is my Daughter. She has made me love more than I ever believed possible.
….So there it is. I am a part of many communities. I have a different role in all of them. Some I help to build, some I just contribute to. Those communities fill many important roles in mine and Melon’s lives, just as Marie’s community does for her and her children. The presence of Autism in my life has made me a more thoughtful, responsible and reflective member of all those communities and has deepened my relationship with them. Today, I am saying thank you for that.