Monday, December 26, 2005

really not alone?

My first child—a baby girl—arrived.We named her Kathryn. Everyone was excited and looking toward the future.The months went by, and people would ask, “Has she said any words yet?” “Is she walking?” “Well no, not yet,” I would reply. The years went by. On some days when we would go to the playground, I found my mind wandering as I watched my child play so happily—alone—whilethe other children laughed and played tag. Did their parents know how lucky they were? My two-yearold was not yet able to walk, or use the slide on her own. Those other parents probably never waited for inconclusive results, I thought, or sat through therapy sessions and evaluations. They’ve likelybeen at the zoo or visiting and laughing with friends. Did they know the miracle of having a child born normal? I watched my daughter, and I also questioned my state of mind. Maybe I worried too much, maybe she was just slow in developing. Friends were telling me not to worry,so maybe what I was feeling was simple envy. I experienced all of these emotionswhen I should have been enjoying the day with my child.Many friends and family offered advice and support, assuring me that Kathrynlooked fine and that I worried too much. They didn’t really understandwhat I lived through each day, and so sometimes they attempted to comfortme by pointing out how lots of kids do that. But do lots of kids hate hugs? Do lots of kids prefer to play by themselves?Do lots of kids cry because the “words arestuck” in their heads and they can’t get animportant message across? Do the phonesof those other parents stay silent becauseno friends were clamoring for play dateswith their children?Sometimes the doctors thought that they knew what was wrong and would render a diagnosis. But the diagnoses didn’t truly fit all of the symptoms I saw in my child. Then one day the years of testing, examinations, and observations came together and someone said, “I think your child has an autistic spectrum disorder.”“YES!!!” I said as I read and researchedthis disorder called Asperger’s. I wept as I read, seeing Kathryn on every page, in every description. At long last, after all of those years as her mother, I felt that I could finally get to know my own child!Imagine the joy! I tell this story to as many people as will listen. Some think it strange that a mother would be so happy about a diagnosis of an autistic spectrum disorder. That is because they do not understand that the diagnosis has opened the curtains on my daughter’s world. In addition, it wasa relief to find out that I was neither an over-protective, nor an ineffective parent. Indeed, there was something wrong that I could now address!Some friends and family are curious and want to know what caused it, and how do you fix it? To me, it doesn’t matter what caused it or what name they give it. Kathryn has it. But although she was born with it, Asperger’s doesn’t define who she is. It does, however, provide a guide to helping me understand her world.After the diagnosis, my focus became that of helping Kathryn cope in a world that seemed confusing to her—to show her the joy in a joke; to help her understand that “skipping school” doesn’t require a skipping rope; to teach her how to converse with others; to give her visual clues in an auditory world; and to respect her wishes by asking her if it’s okay to hug her. There are so many things that have to be done, that I don’t have time to question why Asperger’s entered our lives. I leave that question to the researchers, and enjoy the remarkable gift of my child with Asperger’s.At the playground, I am no longer selfabsorbed, no longer jealous of the othermothers with “normal” children. Rather, I am happy inside as I accept and embrace this wonderful child who enjoys the details of life, and thinks of things that others never dream of. I have a different attitude now. I think it’s too bad that those other mothers may never know the gift of a child who is different.Sure there are days when I am frustrated and don’t handle motherhood all that well, for the parenting of a child with Asperger’s is a daily challenge. But surely there are days when all mothers don’t handle motherhood very well! Some people have offered condolences about the diagnosis, while others are merely dismissive saying “It could be worse” or “How can it be autism, she looks so normal?”For my part, I think of how brilliant I will be after a lifetime of explaining idioms dead last (Did he really die?); skipping school (I didn’t bring my rope!);tickled pink (Who’s tickling you?); getting cold feet (Why don’t you put socks on?); getting up on the wrong side of the bed (But my bed is against the wall); and the list goes on!With all of this in mind, and with the perspective of time, here’s what I’d like to say to all the other mothers like me:Cry when you need to, and reach out for support whenever you can. Know that it is okay to grieve initially—to feel frustrated and alone. Acknowledging those feelings will allow you to deal with them. Read about autism, and try to meet other families who are raising children with autistic spectrum disorders. Learn the strategies that work for you and your child. Most of all, realize that you are never alone. Somewhere out there— today—another mother has heard the diagnosis of autism and needs to hear from you that it will be okay!Perhaps this analogy will work for you as it has for me. Think of your child with autism as a butterfly-in-the-making, who must first go through the difficult caterpillar phase. Slow to learn the ways of the world, traveling alone, and so easily missed in a fast paced world, he or she turns inward—a cocoon of sorts—because he or she lacks the understanding and skills for the next step in life. Other children—those without autism—are like birds whoreadily develop and change as they move toward independence—spreading their wings, making friends and exploring.The child with autism, however, needs the right intervention, environment, and support to break free of the “cocoon.” If you are lucky enough to watch a butterfly hatch, you will understand the task before your child. Watch how hard and long a butterfly works to split the cocoon that has kept it safe. When first it spreads its fragile wings and alights on a leaf to dry, it must feel so different from howit did in the safety and sameness of the cocoon. Like the butterfly, the child with an autistic spectrum disorder must also learn a new way of existing. This process cannot be rushed. Remember that the butterfly can be fragile. If you rip it from its cocoon, try to make it fly too soon, or keep it in a cage, you may never see its potential to fly free, high, and far.Children with autism fly like butterflies too—up, down, here, there and everywhere. They may lack the easy grace of butterflies and birds, but they do get to where they want to go.

Hang in there, it’s worth it.

Love from Kathryn’s mother.

Passed on to you with love from Abby and Emma Jean's mother.
'I have given you authority to trample on snakes and scorpions and to overcome all the power of the enemy; nothing will harm you.'Luke 10:19


Blogger yagottawanna said...

Hang in there - it sounds like an incredible journey

10:11:00 PM  

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