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All About my Mother (And I)

Author: Merrick Egber (September 2018) It wouldn’t be fair to just have an interview with one parent for this year, so since it was my mother’s birthday coming up, on September 18th, I decided to interview her for September’s blog article.

Debra Egber is a role model for women who want to succeed in a male-dominated field. Born in the middle of coal mining country, in Wilkes-Barre, Pennsylvania in 1956, graduating from Penn State University, she went from the daughter of locally popular furniture store owners to becoming an engineer, and after a short amount of time, a corporate executive for Westinghouse and then Northrup Grumman, when the latter acquired the former. Through her many stories of advancing through the ranks into retirement just last year, she is an important marker of the history of women in business.

With that background in mind, here’s my interview with her:

1Q – Merrick: What are your favorite stories about me growing up with my condition?

1A – Debra: You were amazing with puzzles when you were very young. Each day at your pre-kindergarten school, you would enjoy helping with clean-up by putting all the puzzles from that day’s activities back together. You would sit on the floor with piles of random multi puzzle pieces all around you. You never made a mistake and were very fast completing each puzzle from the random pile of pieces.

Change is very difficult for anyone and especially someone on the spectrum. I learned very early that getting you to change your mind and do something you didn’t want to do required more than “Because I said so …”. The successful way to get you to accept change was to provide you with a very detailed analysis regarding why the change was needed. This was not a challenge for me but actually fun since I have a technical background and respond best to logical thinking too.

Your uncle bought you a book for your birthday. He asked you if you liked it.  You responded, “How do I know since I haven’t read it yet?”  We all laughed!

2Q – Merrick: I was originally diagnosed with Pervasive Developmental Disorder (P.D.D.) … can you talk about the evolution of my diagnosis?

2A – Debra: You were born in 1986 and Dad and I began to immediately notice certain traits like fluttering hands and delayed motor skills. Experts told us that you had P.D.D., so we began our extensive journey with seeking out all types of resources and joining support groups. As you continued to develop, we questioned the diagnoses because you exhibited so many traits that seemed different than other P.D.D. children. You were reading before you were 5 years old, you could do complex puzzles without making a mistake, you were like a sponge in learning about subjects you liked, enjoyed attending and discussing movies and concerts with us and loved to be kissed and hugged. It wasn’t until 1994 when you were 8 years old that experts started telling us that you had Asperger’s. This diagnosis seemed to explain more of your traits, but we realized that even this diagnosis didn’t seem to explain all your traits. I realized that every child on the spectrum is an individual with unique traits of their diagnosis mixed with traits from their parents. No one diagnosis from experts would explain everything you can or cannot do but instead provided a starting point. Your potential was still an open path and not predetermined destiny.

3Q – Merrick: You’ve talked before, to me, about how events in your life have influenced you in your positive thoughts about the disabled … why?

3A – Debra: When I was very young, I had an older cousin that was referred to in those days as “slow” and I was told that he was born with a hole in his heart. During family functions, I would spend a great deal of time talking to him. He would tell me about his likes and dislikes, high school experiences and the cheerleader he wanted as a girlfriend. Through these interactions, I realized that all individuals, regardless of their disabilities, have the same dreams, wants and desires. My life has included many other experiences with family members and classmates that had many different types of disabilities. In each instinct, I learned to treat everyone with respect and cherish my time learning from them.

4Q – Merrick: How has my condition influenced your thinking?  How has it impacted your life?

4A -Debra: When you were in your teens, we had a lengthy conversation about autism. I remember explaining to you that folks refer to it as “Little Professor” since you become an expert in anything you like and are compelled to tell everyone honestly what you think.

I know now that “Little Professor” means so much more. You teach me every day how to be compassionate, understanding, resourceful, motivated, driven, creative and loving. Your ability to write songs and poetry is amazing and a true gift. You are a role model for us all and I’m so proud to be your Mom.

5Q – Merrick: What would you tell any mother if their son or daughter has been diagnosed with autism?

5A – Debra: Each autistic child is unique and what works best for one child might not work for your child.  Become knowledgeable about autism via the Foundation you work for (Els for Autism), other experts, numerous available resources on the internet/bookstores/library and reach out to other parents with children and adults with autism.  Contact a Special Needs Trust lawyer so you can decide whether or not this is something you need to set-up for your child.

Remember that your child will have autistic traits coupled with you and your partner’s traits.  Not everything that your child does is because they are autistic.  You will need to understand the differences, so you can react appropriately.

Be flexible, creative and open minded so you can leverage and adjust to your child’s needs throughout their life.  Understand what your child can and cannot accomplish today – tomorrow – someday in the future. For example, your motor skills are delayed but we have all learned how to leverage and adjust so you can succeed.  When we wanted to go on a family ski vacation, we discovered many ski resorts have programs for adults and children with all types of disabilities. We took you to Breckenridge, Colorado, and enrolled you in the Breckenridge Outdoor Education Center and it was an amazing experience. They adjusted their instruction and equipment to address your motor skill needs. I’ll never forget the look of accomplishment and pride on your face when you skied down the mountain. We discovered other programs, both out West and in the East, and you loved skiing in these programs. As a result, you were able to ski down beginner slopes (and a couple intermediate) with ease. Winter vacations became a special time for us as a family to ski and enjoy your accomplishment.

Merrick: Thanks mom!