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Autism Lives Daily in Our House

04/30/10
by Wrightslaw

For Brian and me, the autistic behaviors of Jack, our now six year old son, first appeared at age 10 months. Nearly one year later, we finally received the diagnosis that I had feared: Jack was autistic.

A mom of a child with autism shares her experiences and gives us 10 tips from a military family that has been traveling the path for the last five years.

Read Leslie’s story about her family’s ride on the autism rollercoaster…

For Brian and me, the autistic behaviors of Jack, our now six year old son, first appeared at age 10 months. I was pregnant with Ellie at the time and busy teaching that the University of Maryland, so I passed them off as just interesting, if not quirky, behaviors. Shortly before Brian deployed to Fallujah in August 2003, we met with a physician’s assistant who listened to us about our questions regarding Jack’s lack of language. Going through the referral process was tedious and B was commanding in Fallujah, so communication across six time zones proved challenging. Nearly one year later, we finally received the diagnosis that I had feared: Jack was autistic.

Treatment and Therapy

Since that time, we have tenaciously pursued treatment (since there is no cure). While at the War College in Carlisle, PA, we have found what appears to be the best of every part of the situation: an autism ABA school in Hershey, medical oversight and treatment at the Kennedy Krieger Institute’s Center for Autism and Related Disorders (CARD) at Johns Hopkins in Baltimore, and home therapy through the Army’s supplemental insurance (ECHO through TriCare). We estimate that Jack receives nearly 40 hours a week of ABA therapy and instruction, courtesy of the South Middleton School District, the state of Pennsylvania and the United States Army. Taking both a biomedical approach and an Applied Behavioral Analysis (ABA) approach, Jack has made huge strides toward mainstreaming next year at Fort Bragg (where Brian will be commanding the 508th Parachute Infantry Regiment, aka the 4th Brigade Combat Team of the 82nd Airborne Division).

Autism lives daily in our house. Our daughter, Ellie, age 5, has been affected as has our lifestyle. We have learned to embrace routine (a challenge for people like Brian and me) and we have discovered that autism can actually bring some wonderful things to our family. Because of this disorder, we now are acutely aware of our own spectrum-like behaviors (does anyone remember when I only ate Rice Krispies???? if not, remember when I used to exercise three hours a day?) and we are finding joy in our journey.

The Autism Rollercoaster

After five years of ups and downs on the autism rollercoaster, we are still discovering new and interesting twists to this experience. For example, Jack provides us with an interesting behavior every week and it changes from week to week. Last week, it was an aversion to bath time (something that he has always loved) to this week, it is an aversion to public bathrooms. He has come to love his snowboarder hat. . . .which should be interesting as we return to the heat of the south. He loves his pajamas and will sneak away, at the first opportunity, to slip into them. . . .and, they have to be the right ones. . .anything less, and they are left behind.

His food interests vary from week to week, but his love of Lime Tostitos is unabated, even after four years of consumption. He can tell the difference between Pizza Hut thin and crispy pizza edges and those of Papa Johns’. And. . . . unless you want to see unhappiness, do not try to substitute Red Delicious Apples for his favorite, Granny Smith green apples.

He can sing the score to any Disney movie and absolutely loves to watch Rudolph the Red-Nosed Reindeer on any day of the year. . .even when mom messes up and leaves the spanish version in the DVR (Rudolph speaks espanol, but sings in English). You get used to it.

Legendary Problem-Solving Skills

His memory is photographic and his problem-solving skills are legendary. He has learned to eat at McDonalds, Red Robin, Friendly’s and can shop as well as his mother. Branding (my forte) works with this population. . .he can walk through Giant or the commissary and find his exact brands and what he wants without any help. He also loves animals to such a degree, that I often find a giraffe, a lion or Curious George asleep next me when he crawls into bed in the middle of the night with us.

While his social skills may not be great, his love for his sister and her activities is evident. He loves to make her laugh and he is not above torturing her by taking whatever she is pursuing and holding it over her head. He is also very good at getting her to do his bidding. . . .this winter, he found a way to get Ellie to pull him on his sled around the yard. He attached his sled to the back of her electric car and off they went. Ellie is pretty sure that, since he tends to be nonverbal, that whatever she wants is what he wants, but we have finally figured out that they can both manipulate us like experts.

Autism Touches All of Us…

. . . through our children, grandchildren or the children of our friends. It is time to take action to combat this scourge that is stealing the minds of our children.

If you or someone you know has a child with autism, here are some tips from a family that has been traveling the path for the last five years:

10 Tips from a Mom of a Child with ASDat http://www.wrightslaw.com/info/asd.tips.ld.htm

Leslie Drinkwine, PhD

Note: Many thanks to Leslie for these tips.  Her family is currently living at Ft. Bragg, NC while her husband, an airborne infantry commander, is deployed in Afghanistan.

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4 responses so far ↓

  • 1 Lisa 10/31/10 at 2:39 pm

    It looks like we are PCS’ing to Fort Bragg next Summer. We have a 6 year old boy with Autism. We would appreciate any information as to schools/ABA therapists in the area.
    Thank you,
    Lisa

  • 2 CMom 06/11/10 at 2:10 pm

    Very touching article. We are a military family with two special needs sons. Life is sure a challenge! God be with this family in their travels. Thank you so much for sharing your experiences, what you have learned. I hope that all military families will be able to access such good resources. This is a challenge at times, takes strength and perseverance in the family.

  • 3 Suzanne 05/31/10 at 11:16 am

    I love how you have worked to marshal all the resources to help your child with autism! I am awed and better informed by your 10 tips. I’m a therapist that works with high functioning Asperger’s and am learning more about autism every day.
    Blessings!

  • 4 David1 05/02/10 at 1:18 pm

    Kudos to these parents for participating in their child’s success story.

    Special education is not a spectator event. By the time our kids walk the stage, we have all been their teacher of some sort in their lives.

    Keep up the good work!