So Much to Learn

By Dan E. Burns

Ben’s mother is in Los Angeles this week, so 24-year-old Ben and I are doing double duty. I promised to water her urban garden: chili peppers, onions, and tomatoes grown in pots near an alley lot behind our city center condo.  On the way back from breakfast at Taco Bueno, I see the garden and remember my promise.  Ben and I are a few minutes ahead of schedule.  Watering the garden together could be a good chance to squeeze in something different and fun with my pre-verbal ASD son.    

But it was not.

I turn on the water and hand him the hose.  Why does he stand frozen in place, as if in fear?  Does the sound of splashing water trigger his hyperacusis, or does it fascinate him?  Does he not understand that the water should go on the plants, not on the concrete?  That when the water is not reaching the plant, you move toward the pot, not away from it?  That you control the arch of the water by raising the nozzle?  I am impatient.  A task to which I had allotted ten minutes could take an hour or more. This plant’s bucket is overflowing, and it’s time to move on to the next one, but Ben is immobile, shut down.  I physically push him forward.  He pushes back. I yell at him. I hate what I am doing. 

Back in the condo, Ben crawls into bed and pulls the blankets over his head.  I should be fired.  Then who would teach Ben, now that after two decades of therapy he is teachable?  I’ve been watering gardens since I was a toddler.  This may be Ben's first.  There is so much to teach, so much to learn when you're starting from behind, tending a garden and a son.   

Dan E. Burns, Ph.D., is Adult Issues Liaison for AutismOne and the author of Saving Ben: A Father's Story of Autism. Burns is developing the Autism Trust USA, modeled on The Autism Trust (U.K.) and focused on the creation of new campus communities where adults with autism can work, live and improve their skills and talents in a creative and supportive environment.

Comments

[Twyla]

Beautiful post for sure.

[Sarah]

Hi Dan,

I live south of Boston so I could help from afar. I have a backround in community outreach. Part of my job is to write community updates and press releases. I also love to do research. May be too early to ask but has the Autism Trust looked into a location yet? Surplus property (land, farms) are often available to purhcase through GSA.gov. Usually you get a very good deal on GSA real estate through what is called a Public Benefit Conveyance (PBC).

From the GSA web site:

As a Public Benefit Conveyance (PBC), the property can be substantially discounted in price (up to 100% reduction in fair market value) if it is used for a qualified public use.

Types of PBCs:

•Public health or educational uses
•Public Parks and Public Recreational Areas
•Historic monuments
•Homeless assistance
•Correctional institutions
•Port facilities
•Public airports
•Wildlife conservation
•Self-help housing
•Law Enforcement and Emergency Management Response (PDC)
•Negotiated Sales to Public Agencies

Click here for additional Public Benefit Conveyance information

https://extportal.pbs.gsa.gov/ResourceCenter/content/acquireFedProp.do

properties
https://extportal.pbs.gsa.gov/ResourceCenter/PRHomePage/loadPRHomePage.do?type=full

Another portal for surplus property:

http://www.usa.gov/shopping/shopping.shtml

[Benedetta]

Eileen;
My son tested out really high for spacial skills.
I wonder if they or most all do?

Sarah;
This bolting and running - this too shall pass.
I found mine out in the snow, barefooted one morning. Little blue thing - it is a wonder it did not frost bite his tiny little toes off.

[Eileen Nicole Simon]

Dan, thanks for telling us this brief story, and Dan Olmsted, thanks for pointing out a similar incident described by the director of the group home where you found John Trevett, one of Kanner’s first 11 cases. Going back and finding 7 of these children 70 years later is one of the most important contributions of your book. I just looked up what you wrote about John Trevett, including something Kanner wrote in his 1971 follow-up, “He knows his way around . . . and can go for miles and come back without getting lost.” Dan Burns in his book described getting lost on a bike ride with Ben, and it was Ben who led them out of the woods back to where they started out!

My son will be 50 next month, and also has an uncanny sense of orientation and direction. We need to tell our stories and have them heard by the “experts” who only want to associate traits to flawed genes.

Sarah, I have had many down and downest days. Somehow we do learn to cope, and as Dan advises, “Hang in! Life can get better.”

[4Bobby]

Beautiful post...so well said.

[Theresa 66]

has anyone seen this

www.pandasnetwork.org/impact-on-the-family-2/post-tramatic-stress/

I think we are dealing with PANDAS, but autism, pandas, or other
issues like ours all bring the same heartbreak.

Theresa 66

[Dan E. Burns]

Sarah, are you in the Austin area? We'd love to have you as a volunteer. What are your skills and interests?

Regarding your son's adventure on the beach: our NT kids explore; our ASD kids elope. The difference? Post-traumatic stress disorder. At least your son had on his underwear! Ben might have dispensed with that formality.

At camp, we've hired a full-time behavior specialist and life coach to tie up some of the loose ends. And we'll be offering neurotherapy in a few weeks for campers and their stressed-out parents.

Hang in! Life can get better.

[Kristine]

There really is so much to learn. It is overwhelming at times. I feel we are very behind and my son is only 7- the gap widens every single day.

[Sarah]

Hi Dan, I'm having about the downest (my new word) day of my life right now and I am always amazed at your willingness to reflect and learn. About two weeks ago after I left for work in the morning and while my husband was still asleep, my son, age 8, eloped and ended up alone on the beach across the street from my house. This happened about 7:45 am. He was in his underwear. He was spotted going into the water by woman walking her dog. She promptly called the police who came and returned my son home. The incident lead to a report to DSS. Yesterday we met with the man from DSS who came to do a home visit. I felt like the worst parent in the world. We now have a double locks on all the door and alarms. My son also now wears a tracking bracelet. Even when as a parent I try so hard to help my child, incidences like this deflate me completely. I wonder if there is such a thing as autism PTS.

On a positive note I looked at your autism trust web site and love the idea of an autism community for our kids. Would love to help with this.

[Madvocate]

Dan,
Your ability to observe, analyze and self-assess in the midst of a very frustrating situation is admirable. Thank you for sharing this snapshot from your and Ben's day.

[Donna L.]

Breathtakingly beautiful, Dan.
Feels like I just opened the pages of The Sun Magazine.

"I should be fired." --the silent mantra of every autism parent.

[dan olmsted]

beautiful post, dan. reminds me of john trevett, one of the first autism cases described by leo kanner. we met him in his group home and the woman who worked there told us "Occasionally he will do something odd; watering the houseplants one day, he just kept watering and watering one plant until it overflowed. And then he kept on watering. She got after him, she said in the tone of a benevolent but no-nonsense mother, and he didn't do it any more." we also wrote, "our visit with john trevett affected us deeply; he possesses a quiet dignity that we will always remember."