Recently here at AutismSpot, we’ve been shining the spotlight on parents raising kids with Autism Spectrum Disorders. As we continue our “Spotlight” series in 2011, I am pleased to share Nancy Mandell’s (aka – Nance) story of motherhood. Actually, an AutismSpot reader who has been following our Spotlight Series suggested that Nance be highlighted because she is a trailblazer for many of the rest of us. Nance’s dedication not only to her two children, but to the many families she helps and inspires on a daily basis is inspirational and appreciated!

Story by Nance Mandell

I am the proud mother of Amanda age 25 and Ryan age 23 who is diagnosed with Asperger’s. My husband and I have been married 29 years and he is a psychologist. I got my degree in Counselor Education from UNT in 1986. I was a late bloomer; married at age 30 and had my children late in life at age 35 and 37.

Before Autism, I read a lot, had tons of friends, went out to eat and volunteered for hospice, which I loved. My husband and I also went running together. I worked for Family Outreach as a case worker for 5 years. I worked with incest survivors, but during my pregnancy it was too stressful so I quit and became a stay at home mother.

Both of my children were born preemies, about 4 weeks early. Ryan's pediatrician was there to assist in his birth. Ryan was in fetal distress and came out a chalky white color. After his birth, his pediatrician rushed him out of the room to check him out. My own doctor came in at 3 am to ask why my blood pressure was so elevated, seeing as how I just delivered a beautiful boy. He shamed me and I felt responsible, even though I now understand it was very much pregnancy- related.

From the beginning, Ryan was an easy and content baby. My two year old, on the other hand, was very jealous of her brother and wanted him sent back, so it was stressful trying to keep them apart.

Later, Amanda and Ryan were both handfuls. I had to keep them occupied at all times. Ryan was uncomfortable having friends over and would tell them to go home after only a short while. One thing he really loved was playing Sesame Street on Nintendo, starting at just 18 months. His favorite toy was his stuffed animal, “beep beep.” It took us months to figure out “beep beep” was actually the Road Runner character from Looney Tunes. I used to drive all over Texas to get him special toys he had to have. People thought I was crazy, as nobody understood his obsessions. Dinosaurs were the first. He got so upset when we could not find the T-Rex he desired, so I would make him call Toys R Us before every shipment to make sure it was in stock before driving to yet another location.

I knew something was different from about age 2. Ryan flapped his hands and he walked on his tip toes. He could not handle being dirty and still washes his hands constantly. He had other sensory issues, for example: the smell of bananas made him throw up. In 1996, I began to seek help.

I first heard about Asperger’s from the Autism Society of Dallas, of which I was already a board member. My best friend, Anne Russell Bramlett, had a son with autism and had asked me to serve on the board. When I volunteered for her, one of the professionals we were in contact with mentioned Asperger’s.

Despite a fear of computers, I began using them to study Asperger’s for 12 hours daily. I took Ryan to a well known psychologist who tested Ryan and said no way could he have PDD, as his verbal IQ was higher than his Performance IQ. Regardless, I did not give up. I joined a new listserv called Asperger’s Syndrome run by Barb Kirby. There, I met a mom who told me about the Connections Center. I called one of their staff, Dr. Rachelle Sheely, and she talked to me for an hour. She suspected AS too and asked me to bring Ryan to their center in Houston. We stayed a week so the entire staff could evaluate Ryan. (I was on pins and needles.) I am the only person I know who wanted a diagnosis of AS. At the end of the week, the Connections Center officially diagnosed Ryan with Asperger’s Syndrome.

In the late 90's, Ryan had sensory integration therapy with Sally Fryer. I also used counseling techniques, RDI, and friendship groups. I was one of the first to be trained in RDI, but later they made their certification more extensive.

Ryan’s schools still told me nothing was wrong and I was just an overprotective mom. It took two years for Plano ISD to believe Ryan had AS. When he began middle school and still walked in flapping and toe-walking. Due to those outward behaviors the IEP team finally believed me. Until then, I always felt crazy. Why did people not see what I saw in Ryan?

I bonded with the 6th grade teacher and created a special space for Ryan in the Special Ed classroom. I used a closet to set up a desk and chair, and when Ryan felt comfortable he joined his peers in the regular classroom. Unfortunately, in 7th grade they took all his support away. PISD no longer accepted Dr. Sheely’s or Gutstein's report and had an independent report done that disagreed with the Asperger’s finding. I got tired of being given parenting books and being told what an incompetent mom I was and chose to homeschool him from then on.

I joined every national group on Asperger’s I could find and attended every conference over the years on ASDs and NVLD. The only original group left is ASPEN. Lorri Sherry helped me set up DANISH, so Dallas could have a branch of local families to lean on each other for support.

Ryan was doing somewhat better at home, so I shifted my focus to educating the public on Asperger’s. I now regret I did not do biomedical treatments with Ryan, but not as much was known back then. He did get allergy shots, and since both his father and I are in the counseling field, we focused primarily on socialization.

The most frustrating aspect of being an Aspie mom is not always feeling respected for all of the countless hours I put in researching this disorder. I had a library of over 300 books I knew backwards and forwards. I’d point out websites and books that explained what I was going through perfectly, but still people doubted my son’s diagnosis. Because Autism and Asperger’s aren’t always understood, people with no background on the matter still thought they knew better than I did.

Ryan is now involved in nonPareil Institute and is a very creative artist. He is a gentle, kind person who is interested in the darker side of life and the fight between good vs. evil. He is fascinated by fantasy. But I know his heart and he just wants to get rid of all the bad people.

I see a bright future for Ryan because of nonPareil. Before he had this career path, I was worried sick. I have experienced so much stress over the years it has literally made me ill. My children are my life and I only want the best life has to offer: real friendships, meaningful jobs, and love. Above all, I hope Ryan finds a life partner who gets him. I know relationships aren’t always lasting and that’s what worries me the most.

I want parents to join support groups, share information, be open and trust their guts. We can all lean on each other during the good times and bad.

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Leigh Attaway Wilcox is a writer and editor for the projectLD family of companies. Leigh is Assistant Editor of the internationally acclaimed AutismSpot.com and her work can be found on many of the pLDNetworks sites. Leigh is a guest blogger for the Dallas Morning News on the Dallas Moms Blog and is the author of ALL BETTER: A Touch-and-Heal Book published by Piggy Toes Press in 2007. Leigh lives in North Texas with her husband and young son who loves reading, LEGOs, Mario Bros. and also happens to live with Asperger's Syndrome, an Autism Spectrum Disorder.