by Rachel Steuermann
When the doctor says it’s okay…
While observed in April, to me, every month is Autism Awareness Month. My son, Brian, diagnosed with autism at 18 months, is now 24 years old. For a little over a year, he’s been living in a house with four autistic young men as part of New Hope Community, the adult program we chose after a long search. It’s only a fifteen minute drive away from The Center for Discovery, where he lived from age 13. In addition to being a great program, choosing New Hope also meant that when we visited, we could continue the routines we established when he first moved away from home. Until now.
For Brian, schedules and routines are everything – which makes the current corona virus situation particularly challenging. Since Brian first moved away, his dad and I have alternated visiting him on weekends. In all these years, I have never missed my weekend visit. While he is happy at New Hope, as he was at Discovery, he is very focused on the schedule of our visits and they are a major organizing principle in his life. Now, suddenly the visits have stopped and Brian has limited language with which to understand the reason.
My visits with Brian have always had the same structure. I arrive with whatever treat he requested at the end of the previous visit and a bottle of water. After he eats and drinks those, it’s time to go over our schedule, which is always the same. He looks at me and says, “Mommy go.” So I say, “And now…” (dramatic pause) “… it’s time for Walmart, Colosseo’s, MacDonald’s big ice cream!” Then he repeats it back to me, sometimes prefacing it with, “Ladies and Gentlemen, Boys and Girls…” and often having to re-start many times to get it exactly right – this can require a lot of patience on a day when he is having a particularly hard time allowing himself to finish. 
So first we drive to Walmart for Legos (his favorite – the only “toy” he plays with), then to a local Italian restaurant where he has “square pizza, triangle pizza” (Sicilian slice, regular slice) and “Pepsi soda.” When we arrive, he immediately goes to the counter to point to the exact slice of Sicilian he wants – always a corner piece, if available. They know us so we don’t even need to tell them what he’s having. Then we go to McDonald’s where they also know he gets a hot fudge sundae – often on the house. Next, we go back to his house. I get him settled and we take out his iPad calendar and set up the next visit, two weeks later, including what I will bring him. “Mommy visit big Tootsie Roll.” (He rotates through Tootsie Roll, 3 Musketeers, Twix, “Purple Skittles” and “Brown M&Ms.”) For the next two weeks he recites this to the house staff multiple times a day: “Saturday, February 22, Mommy visit big Tootsie Roll.” The purpose of the treat each visit is for continuity – he knows he can tell me what he wants and I will bring it two weeks later. It’s a way of staying connected.
But now, there are no visits. How do we explain this situation, so full of uncertainty, to him? Typically I draw on things I know he has understood in the past. In this case, I have found something from a very painful time in our lives that seems to help.
When Brian was about 11 he became increasingly aggressive – dangerously so. I have memories of our hallway covered with shards of glass because he had broken all the picture frames lining the walls, or going to the emergency room myself for stitches because he hurled a glass at my head. There were incidents where he physically attacked me and I would yell to his older sister (who was only in her early teens at the time) to call 911 because he had me pinned down. The police would arrive and then EMTs would carry him kicking and screaming into an ambulance to go to the emergency room where he was sedated. 
Eventually, the safest and best option was for Brian to be admitted into a children’s psychiatric hospital in White Plains – a 40 minute drive or train ride from our Manhattan apartment. We had no idea how long he would be there. He was extremely unhappy, constantly saying, “Pack it up, take it home.” We had always been able to tell him what to expect by showing him on a calendar or picture schedule. His dad and I took turns visiting every other day and I arranged for all of his therapists and caregivers to visit so he had daily visits from at least two people. Still, the one topic on his mind was going home. After trying different ways of explaining it, we finally landed on a sentence that seemed to resonate: “When the doctor says it’s okay, you can come home.” Brian embraced this as a way to manage not knowing when he could come home and repeated the phrase over and over during every visit. It was a light at the end of the tunnel and the promise that this would end. 
When I realized I would not be able to visit Brian for a while, my biggest concern was how to help him understand. Each time we spoke, he tried to get me to say a date, or at least a month when I would visit. Then, remembering this phrase from the hospital so long ago, I finally said to him, “When the doctor says it’s okay, we can visit.” Looking at him over FaceTime, I could see that he understood.
So our new routine is finding its way. I send him packages of Legos and we use FaceTime when he’s willing. When he says “No FaceTime!” we talk on the phone. Whatever medium we use, much of the conversation is spent saying back and forth to each other, “When the doctor says it’s okay …” The last time we spoke I added, “We have to be patient,” and he started repeating that back to me as well – it seemed to resonate. When we were about to hang up, he said one last time, “When the doctor says it’s okay, we can visit. We have to be patient.” I have to say, it doesn’t hurt for me to hear those words as well.
There are particular challenges that COVID-19 poses for people with autism, as well as for those with other types of special needs, and for those of us who are caring for them. I think of all the support people who came in and out of our apartment during the hardest years when Brian was at home and really feel for people who are managing home care without their normal support system. 
I’m relieved that Brian and I are finding a way to communicate and to see him adjusting to this extraordinary situation. I’m grateful that he is trying to understand and take it day by day along with the rest of us. If there is a bright side to all this, it is the opportunity to discover capacities in each other that we didn’t know existed – and to realize we are all going through this and in that way no one is alone.
Denise Shelton
April 15, 2020 - 12:50 pm ·People overuse the word “hero” so I won’t use it here. You are a wonderful mother, which is exactly the same thing. Thank you for sharing your story. It helps to put things in perspective for the rest of us. Brian, too, is an inspiration. His struggle to make sense of his world and to fit into it is a profile in courage. I wish you both all the best.
Nora
April 15, 2020 - 3:01 pm ·oh goodness…please. I feel terrible (but I hope the words still apply) This is a guest blogger..
her name is attributed at the top. I should have made it clearer! I am so sorry.
Janet F.
April 15, 2020 - 12:52 pm ·Nora,
No words. I had no idea. You have walked a walk so many never know about. I have been very interested in Autism for a long time, read a lot and while I know about it, I know I don’t understand it in a way parents like you do. I have thought about those with Alzheimer’s and others who are in NYC high rise apartments and all of us around the world. Some of us decidedly much luckier than others. It makes me never want to complain ever. I read a good novel by Jodi Picoult about an autistic young man. I found it compelling. I know there are so many. I pray for your son and others to learn to understand this and deal as best they can. And those caregivers are God’s special people on earth. Prayers for you and your family and your son. You are a strong, strong, person. LIfe has handed so many such heavy burdens that seem to pile on and others go blissfully along with fairly minor complaints. I admire you.
Nora
April 15, 2020 - 3:01 pm ·oh goodness…please. I feel terrible (but I hope the words still apply) This is a guest blogger..
her name is attributed at the top. I should have made it clearer! I am so sorry.
Karen
April 15, 2020 - 2:39 pm ·Thank you for you honesty and love, they both shine through. During this pandemic I’ve thought many times about adult children not seeing their parents, about folks in nursing homes, people in hospitals, but I never thought about situations like this. I cannot imagine how hard it is for all of you. I will keep you in my prayers that this is over soon and you can reunite.
Amy Koss
April 15, 2020 - 5:12 pm ·Motherhood is some powerful ju-ju! Please thank your guest blogger for some powerful writing.
Blyma Wolpin
April 15, 2020 - 6:31 pm ·This piece broke my heart right open. As I shelter at home with my (frequently annoying) children, I cannot imagine what it must be like to be separated from them and not able to communicate. Please ask Rachel if she is ok if I share this more widely. More people need to be aware. While I wish I could believe that we will come out of this a completely changed society (for the better), if nothing else, perhaps more people will be aware of the incredible inequities, and more empathetic to the many people whose lives differ from their own. This is an incredibly powerful piece of writing.
Rachel S Steuermann
April 15, 2020 - 7:32 pm ·Thank you so much for your message – I appreciate that there are others facing similar and different challenges in this extraordinary time. And yes of course I am happy for you to share with others!
Elise Orlando
April 15, 2020 - 9:32 pm ·Kindred spirits we are still.
Rhoda Ralph
April 16, 2020 - 1:01 am ·My love and understanding grows deeper
Rhoda Ralph
April 16, 2020 - 1:19 am ·My love for you and understanding your situation with Brian I realize you too are a hero.
Rachel S Steuermann
April 17, 2020 - 11:17 pm ·Thanks Rhoda 🙂
Lauren
April 17, 2020 - 12:41 am ·I am also a mother with a 28 year old son in a group home. I see my Son every weekend&he comes home overnight a few weekends/month. I haven’t seen him for a little over a month. Over the years my son has shown me how we will never comprehend fully how much he knows. I try to hold that thought close to my heart when I worry about him. He has proven to me many times how resilient he is.
Like you I have lived in that alternate universe having to endure his aggressive behaviors. These behaviors to me are the cruelest of all. I still have to live with the injuries I sustained to take care of him.
My thoughts are with you&we all
have to look forward to the time when we all
can be together again.
Rachel S Steuermann
April 18, 2020 - 3:57 pm ·Lauren, I know what you mean about remembering that our children are resilient. Your phrase “that alternate universe having to endure his aggressive behaviors” really resonates for me. At the time I didn’t know anyone else going through it and felt very alone. We now refer to it as “the dark time.”
I also remind myself of that with Brian – in some ways he takes things better than I do. It sounds like you and your son are navigating as well as possible. It’s striking how this difficult situation that is separating everyone physically is bringing us all closer together in another way. Thank you for responding – 🙂 It’s good to “meet” you.
Rachel S Steuermann
April 17, 2020 - 11:16 pm ·Absolutely! And always will be xo
Kevin Maurice Dent
April 30, 2020 - 5:40 pm ·I’m an aspiring [not so young] writer doing my due diligence to research and learn the craft. I picked this time to finally dive-in for obvious reasons. I stumbled onto Nora and have been drawn by her skills and her passion for teaching. I never imagined I’d end up also finding such a touching story from a guest blog during this surreal time of “emotional distancing”; (as I call it at times). It seems it may apply with Brian right now. On one hand I was wondering “why we don’t hear more stories like yours on the news?” On the other hand, I think I prefer hearing it directly from you, in your words and delivery. Thank you for sharing. Well wishes for you and Brian.
Rachel S Steuermann
April 30, 2020 - 7:47 pm ·Thank you so much Kevin – it does seem like the perfect time to explore writing more! And you’re right, Nora is a wonderful writer and teacher – I have learned much from her!