Autism touched my life 16 years ago, when I became close friends with, Diana, who I met while living in Florida who has a son that is autistic.
Up until that point, I had no awareness of autism.
Several years ago, I had the immense pleasure of meeting fellow-blogger, Bijoux at Bytes From The Burbs, who also has a child with autism. Periodically she will share posts about her daughter, which have always touched me. Such as it was last month, when Bijoux shared about a project her daughter was working on in college.
It was then that I got the idea of hosting an interview with her because I thought it would be educational and enlightening to those of you who might not know much about autism. So I contacted Bijoux and asked if she would agree to share an interview on my blog, and she did.
I have never met this lovely lady in person, but can tell that she is a kind, compassionate, open and VERY humorous soul. And I can also tell that she's an outstanding Mom.
So without further ado, I give you, Bijoux.
Welcome, my friend, and thank you for sharing this interview.
Please tell us some of your initial thoughts and feelings, when you first discovered that your daughter was autistic.
Oddly, I knew something wasn’t quite right in the first few weeks. She was my second child, and I found it disconcerting that I couldn’t get her to make eye contact or smile. Then we discovered she had some eye and heart defects, so we attributed her behavior to those medical issues. Starting at age 2 ½, we began the process of getting her evaluated, but it wasn’t until age 5 that she was formerly diagnosed. Even though I had suspected it for years, it was still difficult to hear. In 1997, there wasn’t a lot of information out there. From my previous career as a continuing education coordinator for medical/social workers, I knew quite a bit about classic autism. People with autism in those days were confined to group homes and institutions. Since this was pre-Internet, I spent my days researching autism at the library, gathering every piece of information I could get my hands on. My husband and I were committed to providing her with the most normal life as possible, so we started speech therapy, occupational therapy and at-home interventions immediately. As far as my feelings, there was a lot of crying and fear. There was definitely a period of grief for the loss of the ‘normal child’ I thought I had given birth to. I did not know how others would react, so we kept her diagnosis to close family members. It’s hard for me to admit this, but there was definitely an aspect of shame and not wanting anyone to know.
I know there are different functioning levels of autism. Please share a bit about your daughters.
She was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified by a neurological psychologist. She is considered high-functioning. She did not have enough of the characteristics of Asperger’s to get that diagnosis, nor is she as high-functioning as many Aspies we know. She is completely verbal, though she suffers in her pragmatic language skills and she also has a dysfluency problem (stuttering) that is non-related. Her gross and fine motor skills are below average (never able to ride a bike, although I am taking her to a special bike camp this summer, so keep your fingers crossed), can’t catch or hit a baseball, has trouble with scissors, zippers, etc. and is generally messy at most tasks. Has difficulty in social situations (can’t start a conversation or keep one going, no clue on how to join in) and is emotionally immature for her age (extreme difficulties spending the night away from home or in any new situation). Her strengths are in music and creative writing.
Overall, how do your daughters peers react and respond to her autism?
She was generally accepted by her peers from preschool to about grade 5. She had a nice group of friends and was invited to birthday parties, etc. I had her involved in Girl Scouts, so she also had that as a social resource. Unfortunately, after about age 10, her lack of social and emotional skills made her stand out. It was as though all her friends matured and she stayed the same. A big part of this is that her interests are immature for her age. She still played with American Girl dolls in middle/high school and watched the Disney Channel. She is also small and has a baby face, so even at age 21, she is still given a children’s menu at restaurants. She survived with one best friend in high school and a few outliers, who were really just friends with her best friend. Her one best friend has been a lifesaver though. She is a girl who had a brother (who has since passed away) with severe cerebral palsy, so she is extremely sensitive to those with disabilities. I do not know how my daughter would have gotten this far in life without her. A girl with Asperger’s at her community college also befriended her in a class her first year. Those are currently her only two social contacts. She did not have much trouble with bullying, it just got to the point where she was ignored by most classmates. It would have been nice if her peers had made an effort to include her (she WANTS to socialize, she just doesn’t understand HOW), but I also realize that teens aren’t known for maturity in social situations. Most are just trying to survive themselves.
What has been the biggest challenge?
For me, it has been the ‘perpetual childhood’ aspect of the disorder. I still feel as though I have a preschooler at times, driving her everywhere, reminding her to clean her mouth and take a shower, picking up after her because she is oblivious to her messes, calming her down when something is not working (like her Kindle). When you have children, you have hopes and dreams for them, and the knowledge that they will one day leave you and be on their own. We will never have that with our daughter. Even though she’s in the process of earning an Associate’s Degree, I can already see that she will not be able to hold a regular job and her lack of motor skills and common sense don’t make it likely that she will ever drive. It’s a worry that never leaves you….what will happen when I am gone?
What has been the greatest joy?
Watching her try so hard to do something and finally succeed. It’s usually the littlest things that bring the greatest joy. I remember how much she wanted to blow out her birthday candles at age 5. She struggles with any task that requires verbal explanation, so imagine trying to explain how to blow out a candle. It’s hard to explain or demonstrate (you can’t see air!), especially because we really didn’t understand why she couldn’t do it. She was finally able (though to this day, it still takes her a number of tries) and the look on her face, followed by the exclamation, “I DID IT!” was priceless. There is also a lot of joy in the humor that she brings to our family. Most people with autism are brutally honest. It’s actually difficult for her to lie, and when she does, she will immediately tell on herself. Her viewpoint is so different from the rest of ours, she can be quite hilarious at times, without meaning to be, and she also has trouble understanding when someone else is trying to be funny. This year she took college biology and she told me, with a straight face, “Today in class, we looked at a healthy pig’s lungs, and the lungs of a pig who smoked.” After I regained my composure, I asked her if she really thought a pig had smoked. She thought about it and then said, “No, but that’s what the professor said!”
Is there any advice or support you can give to parents with autistic children, as far as things that you have learned through this journey?
Read as much as possible on the topic, attend conferences on autism, find a support group of parents who can relate to what you are going through and be a network of exchanging ideas, and never give up on your child. They will always surprise you! The biggest thing I’ve learned is that autism is a disorder with a myriad of symptoms. Although some of the general characteristics may be the same, no two people with autism will present the same way. Erase Rain Man from your head. My daughter is horrible with numbers!
Thank you so much, Bijoux....x
*Please feel free to direct your comments to Bijoux, as she will be responding to them personally.
More information: Autism Speaks