Transition to Adulthood

The gardens can be haunting in the fog

I met the most amazing lady yesterday.

It started with an incredible experience: Steve and I went to the Coastal Maine Botanical Gardens in Boothbay. First off, if you’ve never been to the Gardens, go! Holy Cow, what a mind-blowing place (and this is coming from a total non-gardener.) The idea of creating a Maine botanical garden germinated (hah!) in 1991; in 1996 the founders mortgaged their homes and purchased 128 acres of land in Boothbay, including tidal shorefront. Over the years the Board has added land through purchase and gift, so that today the gardens comprise 270 acres.

By itself, that history is pretty impressive. But wait till you see what they’ve done with the place. From a sensory garden for the disabled (including the blind and those of limited mobility), to the Children’s Garden (including a fairy hut, fully accessible tree house, Blueberries for Sal and eco-friendly rope clothesline for the youngsters who have never even heard of such a low tech device!) to the water features to the rose arbors to the butterfly gardens to the shoreline trail to the  . . .

It broke my heart. It broke my heart because all I could think was “Josh would love this.” Josh, who at 22 neither recovered from autism nor as of yet has acquired higher-level skills such as talking or reading, does love hanging out where plants are.  I have no idea why. Our home is on a few acres of Maine woodland, so maybe Josh just feels connected to botany. He spent a few years at the Portland Arts and Technology High School tending to their greenhouse, so there’s that in there too. Josh’s idea of a good time is to wander around plant nurseries like Skillin’s and O’Donals. Some will point out that to do so is a hugely sensory experience: the smell of dirt, manure, herbs and flowers; high greenhouse roofs strung with hanging plants reaching down to low-rise tables stuffed with small pots; diffused light, controlled temperatures . . . . maybe he enjoys all that.

It’s certainly not genetic. The whole plant world has never appealed to me. It sounds like a lot of hard, dirty work—all that bending and squatting and digging. And by design, gardening involves bugs—bees at the very least. As I recall worms and slugs can also be involved, not to mention (where we live), mosquitoes and gnats. Not my idea of fun.

But this—these botanical gardens. Wow. It suddenly occurs to me that I don’t need to be the world’s best chef in order to be a thoroughly appreciative Eater, which I am. There is something magical about these gardens. If there were white flakes in the sky, I would feel like I was in an enchanted snow globe. There is a range from formality to wildness, with the transitions so subtle that one is aware only of moving through space and time.

Josh would love this. Which was why my heart was breaking.

It cost me and Steve $29 to gain admission to what also turned out to be good exercise. (Thankfully, there are small electric trolleys running silently along the paths for when one feels one has had sufficient exercise for one day.) Doing some quick math, I figured it would cost roughly $45 for Josh to go, because he goes on outings with two staff, for safety reasons.

If you have special kids, you know a lot of what we try to do is an experiment. The thing with experiments is you have to be willing to walk away from the ones that fail. It is not unknown that I think I have a brilliant idea—Josh will have fun doing this!—only to find out he doesn’t even want to get out of the car. That doesn’t happen often, but it does happen. I can’t tell you how many movies we’ve bought tickets and snacks to; staff get Josh settled in to watch Star Wars; and about 10 minutes later, Josh stands up with a smile (his non-verbal way of communicating “let’s blow this joint”), and out everyone goes. (Less professional staff—not on our team—would try to argue with Josh.) That’s a lot of money invested in a no-go experience.

Not that I’m complaining. It’s not like we had to send Josh to Harvard or anything, although that would be a nice problem to have. But I do find that financial risk involved in some community inclusion causes all of us to think twice or more before taking things on. –Which if not closely monitored, can result in a person with a disability whose world gets smaller, and smaller and smaller.

At our last Team meeting about Josh, I shared something that blew me away when I first read it:

It is estimated that the doubling time of medical knowledge in 1950 was 50 years; in 1980, 7 years; and in 2010, 3.5 years. In 2020 it is projected to be 0.2 years—just 73 days. Students who began medical school in the autumn of 2010 will experience approximately three doublings in knowledge by the time they complete the minimum length of training (7 years) needed to practice medicine. Students who graduate in 2020 will experience four doublings in knowledge. What was learned in the first 3 years of medical school will be just 6% of what is known at the end of the decade from 2010 to 2020.[1]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3116346/

I find great hope in that. I pray that someday we will know enough about autism and genes and adult stem cells and treatment to overcome the behavioral excesses and deficits associated with autism. My job as a parent is to make sure, when that time comes, Josh’s brain is ready to take advantage of it. To me—having seen some YouTube footage of brain dendrites and synapses building as a result of one’s experience—that includes keeping Josh stimulated and engaged in new and novel ways, as often as we can.

Which brings me back to this most amazing lady I met. At the end of our visit, Steve and I went into the Coastal Maine Botanical Gardens office, and asked about membership. I dread these kinds of conversations. Most people don’t have a clue what it’s like to love someone with autism or an intellectual disability. To get others to understand, I have to relive the more painful parts of our reality, like “Josh doesn’t go anywhere in the community without two other adults.” Sometimes people look at me and think—or say—“So buy three tickets.” I mean, have you been to Funtown? Tickets to Funtown are $37 each. Even just to accompany a “little” is $19. That’s a lot of dough to blow on an event that Josh may want to transition from after 30 minutes. Thirty really cool minutes, to be sure, and well worth experiencing, especially for an individual who has significantly fewer experience opportunities than his neuro-typical age mates. (My husband reminds me those neuro-typical experiences include drinking excessive alcohol, doing drugs, engaging in non-married and unprotected sex, driving carelessly and other reckless actions undertaken by immortal youth. Still.) So for a long time we bought three tickets.

Until I got smarter. Until I started to ask, “Do you have Caregiver passes?” A lot of ticket-sellers still don’t understand that, so you still have to go into the story, which we did, yesterday, at the Coastal Maine Botanical Gardens. When all of a sudden this woman pops out of a cubicle and says, “Yes! Sure! We can help you!” And that is Betsy Angelico. Betsy is a Membership Associate for the gardens. Betsy gets it, for reasons she will have to explain to you. But Lord have mercy, she gets us, and she set us up. For $150 ($29 of which was credited from our tickets that day), we became Contributing Members for one 365-day year, which includes passes for me, Steve, two of our guests and Josh “and caregivers” to attend the Coastal Maine Botanical Gardens any time we want.

I suspect we have a long way to go, we who care for and advocate for people with disabilities, but at least we have a path on this one. For many people, access to our community is dependent upon the company of caregivers. These caregivers are as essential to some people as are service animals to others. Over time, retail stores, YMCAs and other destinations have added Family Restrooms that provide caregivers the access, space and privacy we need for special circumstances. If we keep reaching out, ticket vendors will more widely permit caregiver passes. These are, of course, vulnerable to abuse, so it’s critical we do everything we can to prevent that.

In the meantime, check out the Coastal Maine Botanical Gardens. Ask for Betsy. It is not lost on me that her last name is Angelico, the root of which is angel. It would not surprise me at all if I return and no one knows of this person; that this angel came down from above just to make things a little easier for our special family, just to be understanding and kind and nurturing.

Whether Betsy is an angel or not, I have a feeling she’ll be around for you, and she’ll fix you right up.

**Many thanks to the Coastal Maine Botanical Gardens website, from which these pictures were borrowed. See http://www.mainegardens.org/.

[1] This presents a challenge as well. The same source continues: Knowledge is expanding faster than our ability to assimilate and apply it effectively; and this is as true in education and patient care as it is in research. Clearly, simply adding more material and or time to the [medical education] curriculum will not be an effective coping strategy—fundamental change has become an imperative. I think this is yet another reason practitioners of the healing arts must increasingly rely on web-based decision support. We simply know too much to know it all.