Autism Encounters

Sometimes when I am having a hard day of parenting, I think about a woman I used to work for named “Diane.” She has increasingly become a hero of mine and for a long time now, I have wanted to tell her story and how I became involved in it…

Diane and her husband struggled for several years to have children but to no avail so they decided to adopt. First they chose to adopt a newborn baby girl from South America whom they named Jessica. A year or two later they adopted a little boy, Nathan. Both children seemed healthy upon arrival in their family but then things began to slowly unravel, beginning with Jessica.

Hours after one of the first vaccinations she received at around 6 months of age, Jessica began to experience violent seizures so severe that she had to be hospitalized. Though she had seemed a perfectly healthy, normal infant before these seizures, afterwards, she was not the same child. Neurologically she was changed and from then on, her developmental progress was dramatically altered and Diane could only watch as her daughter became disconnected from the outside world, swallowed up by the confusing, disorienting disorder known as Autism.

To add to the heartbreak, it became increasingly evident that Nathan was not developing normally either (incidentally, the children are not related). He was eventually diagnosed with Aspergers Syndrome. And so, without much experience handling children much less those with substantial developmental delays, Diane and her husband were thrust into an interesting parenting dilemma. Would they rail against their lot or would they see these children as blessings, no matter what, and seek to give them the best upbringing possible?

Well, they chose the latter. They chose to give their children the best shot at learning and opportunity possible, hiring various in-home tutors, therapists, etc to work with their children…there were no lengths they would not go for them. A collage junior, I was looking for a part time job and the opportunity to do some in-home tutoring with a severely autistic girl sounded so interesting and rewarding. After seeing an ad she had put up on my school campus, I called Diane up and got an interview.

I met Jessica when she was eight years old. She was sitting on the living room floor, stemming on a straw. Stemming is a term for the repetitive actions an autistic child will often engage in. She was literally unaware of everyone around her and with a faint smile on her face, her mouth half open, she just stared up at the straw and waved it in the air. How long she had been lost in this activity I was not sure but she showed no signs of losing interest in the straw. She didn’t say many words and made no eye contact. She was still in diapers as being potty trained was beyond her capabilities. Frankly, I had never met a child with such severe Autism.

An incredibly beautiful girl, Jessica had wavy black hair, large, luminous brown eyes and a long, lean little figure. It didn’t take us long to bond, her getting on to my lap at one point and engulfing me in a big hug. Diane decided I should have a go at this job and though clueless as to what it would entail, I was eager to learn!

For two years, I worked with Jessica three afternoons a week. I was introduced to the Applied Behavior Analysis (ABA) method of tutoring and sought to teach Jessica different concepts and skills. It was rough as she often had severe tantrums but on the good days, it was so exciting to see her pick up something new and to record that in the progress book Diane kept for the various tutors to write in after each session…progress big and small is what kept her hopeful that Autism wouldn’t get the better of them!

Besides Jessica, I had the opportunity to work with two severely Autistic boys for a summer. But my most memorable experiences were those spent with Diane and Jessica. Seeing the way Diane never complained about her situation but always sought to fight for her daughter’s well being and future. The way she loved her children with all her heart even though she could not be loved back in the typical ways an adolescent might love a parent. The way she took the time to educate me about Autism and the unique isolation parents of special needs children often feel.

I look at my “worst” days as a mother and realize my hurtles pale in comparison. I will be forever grateful God gave me the opportunity to be immersed in the world of Autism if only for a few years. Those children deserve a future and those parents such as Diane are heroes in my opinion!

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9 Responses to Autism Encounters

  1. artistrower says:

    How wonderful that she put so much into her daughters development…was her son as severe in his disability?

  2. artistrower says:

    Susanna…this is grace. For some reason signed in as Justin.

  3. Anonymous says:

    Beautifully-told Susanna. I remember Diane coming over at times, just to talk and be heard by Mom. And didn't they go to your wedding? Maryanne

  4. SYK says:

    hey susanna! it's so encouraging to read this post. i have a couple autistic young adults i work with @ my job… although a challenge to work with, they are often also a joy to be around. im sure it's much harder for their parents and i admire those who are so dedicated and selfless. makes me realize i shouldnt take things for granted…hope youre doing well:)

  5. Anonymous says:

    Well told, Hon…Would love to see them again.

  6. Becca says:

    I had the distinct blessing of doing some private teaching for a family whose son has special needs (presenting itself much like autism) back when I was finishing undergrad/grad school. I learned a LOT about myself as a teacher :) that stuck with me in my classroom and I learned a LOT from his mom now that I have Asa. Grace upon grace. Patience overflowing. Advocating for her child every step of the way. Speaking the truth in LOVE. They are a WONDERFUL family whom we are so thankful to stay in touch with–their son was a bell ringer in our wedding and we stop to see each other when visiting family. Some of the most challenging teaching I have ever done, but also immeasurably rewarding. Your post really resonated with my experience as well. :)

  7. Susanna Rose says:

    Grace-I think Nathan was aware of his disabilities but in a child-like way. It would be interesting to see how he is doing now.Maryanne-YES, she and the family were at our wedding! SO special!Becca-How neat that you had such a similar experience! We are blessed to have known such families!:)

  8. Homemaker, MD says:

    Thank you for telling this story of grace. It's always a blessing for me to hear the special way that those with disabilities are uniquely gifted to teach us about God.

  9. meg says:

    Hey Susanna, I just found your blog. That story is so touching, and a good reminder of what a blessing all our children are, even on their worst days.

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