Remember, if you ever need a helping hand, it’s at the end of your arm, as you get older, remember you have another hand: The first is to help yourself, the second is to help others. Audrey Hepburn
Recently a mother I’ve met in this wonderful world of blogging sent me some questions and asked if I would be willing to answering them. Not only do I not mind answering, I thought I would turn the answers into a post. So here it goes, a mom to mom Q & A…
1. What is Teddy up to now?
After graduation from high school in 2009, Ted left home to attend a state university for one year. When he decided not to continue, I was momentarily disappointed, but he said that he was “sick of school and just wanted to study computers.”
Ted taught me a long time ago to be flexible. He has always developed at his own rate, so we left the conventional path and honored his need to no longer attend traditional school. However, we told him he did need to be working towards the ultimate goal of independent living. Ted has since completed the computer-focused CompTIA A+ certification and is halfway through the CCNA certification.
Additionally, Ted is enrolled in Mom’s Daily Living Skills program. The curriculum includes weekly menu planning, grocery list making and independent grocery shopping. He doesn’t drive, so I provide the transportation to the store. He also cooks his meals, does his dishes, laundry and cleans his room.
And now, just days ago, he announced he is ready to begin looking for a part-time job. Stay tuned as I chronicle that journey.
2. What was it like when he went through puberty?
His energy level greatly decreased. It was stunning. He went from a hyperactive child to a sleep-all-the-time teenager. Pretty typical of teenagers in general I have been told.
Regarding the emerging sexuality puberty brings, Teddy had all the usual outward physical changes and acknowledged the internal desires as well. That said he did not act inappropriately because of these desires. In fact one day recently he told me he wanted no part of a relationship because, “They are too much work and aren’t worth it.”
3. When you received the diagnosis what information, if any did you get?
I was very fortunate to become good friends with the psychologist who diagnosed Teddy and she was always available to answer questions and direct me towards the researchers of the day. She also told me about Future Horizons conferences. I attended many and have seen Temple Grandin, Tony Attwood and Carol Gray, my personal favorites, many times.
4. Where there any “miracle” treatments?
There were no miracle treatments. We did try medication for aggression and anxiety with minimal results. We ceased all meds when Ted was 12. We tested for underlying medical conditions such as allergies, seizures and leaky gut. All results were negative. I am by nature a skeptical person and deliberately stayed far away from any fad treatment that used the word CURE, provided only anecdotal evidence and always seemed to cost a great deal of money. Treatments that prey on parents desperately seeking help for their children unfortunately exist. I always thought of Jonas Salk, parents didn’t have to go down back alleys to get the polio vaccine. If there is a legitimate medical breakthrough in autism I have always been convinced we would know about it and not from some shady website. That’s just me.
5. Did you read anything that was particularly helpful?
I loved, loved, loved Tony Attwood’s Asperger’s Syndrome. As I was reading it I was like, “This man has lived in my house and I didn’t know it.” It was my near constant companion. I gave a copy to his teachers every year and loaned them his videos.
6. Who did you talk to?
The first year and a half post-diagnosis was wonderful. I began working for Louisa, Ted’s psychologist the three morning he was in preschool. I joined her on observations and typed reports. I learned so much, not just about Asperger’s, but about the many disabilities that impact kids and their families. Active in the special needs community, she asked me to participate in an Asperger’s presentation designed to be from the parent’s perspective and I was able to travel to Washington D.C. and Salt Lake City to speak at conferences hosted by LDA International and the National Council of Exceptional Children.
I also had a very dear friend, Jenny. Her son David had the appointment before Teddy’s at OT. We came early for our appointments so we could talk during David’s time and then she stayed during Teddy’s time. This weekly hour and a half was therapy for both of us. The lessons I learned from Jenny about her experience with Down Syndrome were significant and are worthy of its own post.
And then we moved and it was very difficult to leave behind such a solid support group. About a year in our new city, I befriended a family who had a son with autism a few years older than Ted. His mother, Sofia, was a well-versed advocate and she taught me the law. The boys were like two peas in a pod. Their mutual love of K’NEX, LEGOs, computer games and complete distaste for eye contact and small talk made them perfect companions. Our families also took turns babysitting, giving us grown-ups an occasional night out.
7. Where did you get support, and if you didn’t how did you handle that?
My number one source of support came from my husband, Neal. He is my best friend and my rock. Although he was often overwhelmed too, we always made it our first priority to support each other. We are a team and I don’t know how I would have done this without him. I also got support from two other favorite guys, Ben and Jerry. I ate my weight in ice cream during those early years.
8. I noticed you began this blog with flying, did that help you? Was that something that came about because of the diagnosis?
I became a pilot later, when Ted was in high school. I didn’t have the time, money or mental energy before then. It has been a wonderful release and sense of accomplishment. I guess it represents a dozen or so years of delayed gratification.
9. Was there pressure to do things with Teddy in a particular way?
When you ask about pressure I think of school. They weren’t prepared to deal with his challenges. They wanted him to fit in their already established programs. His 3rd grade year was the ultimate submission to their pressure. I allowed him to be put into a self-contained Emotionally Conflicted classroom and it was hell. They did none of the things they said they would do, like work with him one-on-one and begin mainstreaming within six weeks. We ended up, after months of unfulfilled promises, filing a lawsuit to get him removed from the class. Those were the darkest hours – but from it came tremendous positive change.
10. Where you tempted to do things to help him that you later regretted?
Regrets, I have a few, but I didn’t have a crystal ball. I honestly and sincerely always acted in what I perceived to be Teddy’s best interest. I tried to be in the moment and make decisions based on what I knew at the time. Was I perfect? Absolutely not.
Discovered along the way is that the times I could regret, like the EC classroom, produced unanticipated positives. I have to believe that things happen for a reason. It is so much easier for me than believing in regret.
11. Did you wonder, worry, question about his future?
When he was little I wondered, worried and questioned his future constantly. I had two flash forwards,
1. I was sitting at his Nobel Prize awards banquet,
2. I was sitting at his arraignment.
I used to say he was born without a “pause button.” He had no ability to pause and reflect before he reacted. He just lashed out impulsively and it was my job to install in him an after-market pause button. I strongly believed learning to control himself was key to his overcoming his challenges. I was always working towards making vision number one come true.
12. When you did worry what pulled you back to the present?
What pulled me back to the present was Teddy and the job I had to do. I would occasionally take mental-health breaks, to rest up, correct my thinking, but I couldn’t stay out for long. I honestly felt I had to save his life. You can’t rest for long when you feel that way.
13. What about friends and family – how did they react?
Our friends and family have always been supportive. We live a 1,000 miles away from my husband’s family so we don’t see them very often. My mother (my father passed away in 1987) moved to our city in 2000 and was invaluable, especially with Meg. She was also who I called when I had those moments of self-doubt. She is my mothering mentor. After all, I kind of like to think she did okay. As far as friends, the ones we had were supportive, if they weren’t, they weren’t our friends.
14. Did they pressure you to do things you might not have?
No. I can honestly say we have not received pressure from our family and friends. Both Neal and I are independent, think for ourselves people and our families respect that. We are fortunate.
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Thank you to Ariane for reaching out and asking me these questions. I am honored that you have not only read my work, which is like reading my heart, but you have taken your valuable time to comment and compose these questions. It means a lot to me that someone cares, that maybe someone can be helped by what we have learned.
Visit Ariane at Emmashopebook.com