Karen Solomon has been a dear friend for many years. Usually uncomfortable being in the center of things, Karen agreed to do this interview for WomanPause in the hopes she would help other readers. Karen is the mother of two adult sons, one of whom has autism. In our chat, Karen shares her journey–not an easy one, for sure. She tells us what she’s learned along the way, not the least of which is the power of community and the importance of asking for help.
Karen: I’m a little nervous about this. It’s like when QSAC (Quality Services for Autistic Citizens) wanted to honor us at their June gala. My first instinct was to say no and graciously decline. Rob said, “They’ve done a lot for us. We shouldn’t decline.” So, I did it.
Diane: And you’re glad you did it.
Karen: Yes. I loved the young woman that I worked with, and there were really important people for me to honor. But no, do I like standing up in front of 500 people and making a presentation? That’s not my thing.
Diane: So, doing this interview is a little easier.
Karen: This is a little easier.
“I Gave Them Three Days’ Notice and Began This Journey”
Diane: I appreciate you doing this. Thank you. I think that the major topic to explore is what happens when you have a child with special needs and you’re growing older. How does it feel to make plans for when you’re either not going to be able to be as involved or not be around anymore. But before we even jump into those tough questions, can you give us a little bit of background about your experience with autism?
Karen: It certainly came as quite a shock. Douglas was diagnosed when he was 26 months old with PDD (pervasive developmental disorder). I don’t know how, out of that jumble of words I’d never heard before, I was able to ask the psychologist, “Do you mean autism?” He said, “Well that’s a small component of it.”
It was a terribly painful journey, Diane. I’d been working full time as a hospital schoolteacher after a brief maternity leave. Then I notified my supervisor, who was really kind, and told her I needed to leave the position. I needed to understand what we were confronting. I gave them three days’ notice and began this journey.
Diane: How many years ago was that?
Karen: Douglas is 32, so it’s 29 years ago.
Diane: 29 years. I am certain that what we knew about autism back then was not what we know today.
“I Remember, I Couldn’t Eat at One Point. Then The Only Thing That Was Comforting Was to Eat”
Karen: That’s true. The whole field changed and thankfully so. I met parents whose adult children were older than my son. One woman told me that the psychologist or psychiatrist told her that her son seemed like he had been in the Holocaust and blamed it on the “refrigerator mother syndrome.” Thankfully, a psychologist, Bernard Rimland, whose own child had been diagnosed with autism, destroyed that theory.
Diane: Can you explain what was meant by “refrigerator mother?”
Karen: They believed that the syndrome was caused by a rejecting, cold, refrigerator-like mother. They didn’t say father, but mother.
Diane: God forbid they said father.
Karen: Right. God forbid. That was the original thinking. But not at the time that Douglas was diagnosed. I’m actually not so up to date with the very latest in terms of causation. But there seems to be a trend that favors a combination of genetic and environmental causes. I’m at peace with that. But it was definitely a journey. A very, very painful journey. I remember, I couldn’t eat at one point. Then the only thing that was comforting was to eat. And every day I dropped Douglas off at his early intervention program, I stopped by a Dunkin Donuts next door and had two jelly donuts.
Diane: I get it. You needed comfort wherever you could get it.
“I Had Never Been in a Support Group Before, Ever. But I Asked for One. I Knew I Needed It”
Karen: Douglas initially received early intervention at an early childhood program sponsored by United Cerebral Palsy, which was not the appropriate program for his disability in most respects. I asked one of the social workers there about being part of a support group. I had never been in a support group before, ever. But I asked for one. I knew I needed it.
Diane: That’s great you knew you needed it and you asked. I think we’re so often afraid to ask for what we need.
Karen: They told me they had disbanded one. But they restarted it because of what I said.
Diane: Oh, that’s wonderful.
Karen: So I participated every week with a group of parents, and I remember all of them. Each of our children had different disabilities, and we were from different ethnicities. It was just a very interesting group. When Douglas transferred to a more appropriate program for his disability, The Birch School, I also participated in a support group there. It’s because of my connection with one of the parents who I’m still sporadically in touch with, that I became aware of QSAC, which is the agency that sponsors Doug’s current group home. The organization was started by a group of parents when there were no services whatsoever. They started very small with a small after school program and then they built themselves up to where they are today, a premier agency that sponsors group homes.
“It’s Very Isolating for the Family Who Needs Connection”
Diane: What does QSAC stand for?
Karen: Originally it stood for Queens Services for Autistic Children and now they’ve expanded so much they’re Quality Services for Autistic Citizens.
Diane: Oh, I love that. And they work with adults now too.
Karen: Yes. And my son is one of them.
Diane: So you had to do a lot of the legwork?
Karen: Yes. Except I would say QSAC was instrumental. I went to their monthly meetings and participated in the support group. I met a lot of people, asked a lot of questions, and made some very fine contacts. They provided a lot of emotional support that helped me grow because it didn’t happen overnight.
Diane: I think that any time you have a child with any kind of difference, you feel alone.
Karen: Absolutely. Especially when you’re not anticipating it and you don’t have familiarity with that particular set of circumstances. It’s very isolating for the family who needs connection.
Diane: Connection is the magic word there. Right?
Karen: You need connection.
Diane: Douglas is the oldest.
Karen: Douglas is the oldest.
Diane: And then you had Evan. How far apart are they?
Karen: They’re three years, five months exactly apart.
Diane: Did you know something was up with Douglas while you were pregnant with Evan?
Diane: Were you afraid to get pregnant?
“I Did My Best to Avail Myself of What Was Out There”
Karen: Yes. And that’s a story too. We contacted a highly regarded Genetic Researcher, Dr. Edward Ritvo, who was based in California. I asked Robert to call him directly. And he did. We told him our concerns about the likelihood of this happening again. He told Robert to go for it.
Diane: Were you nervous your whole pregnancy or Evan’s infancy? Were you looking and looking?
Karen: Well, I was hoping that we would have a girl because the likelihood was less with a female child. I do know families where they do have more than one child with autism.
Karen: We briefly also considered having a third child. We knew at that point that Evan was fine, but we weren’t comfortable taking that risk, not only for ourselves, but for Evan, our younger child as well. It was liberating at that point to give away all my baby things to lovely people.
Diane: How do you feel it affected Evan growing up?
Karen: We did our absolutely best to shield him by taking advantage of all the services available to us via QSAC. People came to the home to work with Douglas. I had a group of young–it was primarily young women–who I absolutely adored, treasured. Not only would I use them to enhance the situation for Douglas, but I would also integrate them so that they could assist me in group activities. I did my best to avail myself of what was out there so Evan could get the attention he deserved. But I do know it definitely impacted him.
I remember one of his grade school teachers talking to me about the impact because I think he shared something with her. I said to her, “Well did he tell you that he went to space camp with his dad?” I tried to make special circumstances that were designed just for Evan, his own private time.
“I Overprotected Him and Did Not Include Him Enough”
He had a small close group of friends that he brought to the home. And some of his friends were really fantastic with Douglas. Douglas would request their company. Douglas’ language is limited, but he would say, “Justin sleep?” He always wanted Evan’s best friend Justin to sleep over.
Douglas’ placement in the group home coincided with Evan’s going away to college. I had my two kids leaving at once, which was like wow. I also had major surgery at the same time.
There was so much going on at one time. But I do remember when Evan came home for the Thanksgiving break, I had about 40 kids in my house. I realized this was kind of a reaction to Douglas not being in the house and Evan invited the world over.
Diane: Now he was free to do that.
Karen: He was free to do that, which was jarring. And then there was another incident I’d like to share with you. When Douglas was placed in the group home, I invited Evan to join Rob and me to go drop Douglas off for the transition. Evan initially told me he didn’t want to go. For whatever reason, my good judgment prevailed, and I didn’t push it. Within the hour he changed his mind.
When we got to the group home, Evan said “Where is it?” I said, “Evan, it’s right here. We’re here.” And he said, “But Mom, where is it?” I did not understand what was confusing him. Evan thought Douglas was being placed in an institution. I never explained the process to him, and that was my fault. All of a sudden, it made sense that I overprotected him and did not include him enough.
“We All Wish as Parents That We Can Protect Our Children from Things We Really Can’t Fully Protect Them From”
Diane: And he imagined what he thought was the worst.
Karen: He didn’t imagine it was just a house with other young adults with a disability. A group setting, kind of like a commune.
Diane: Must have been a relief.
Karen: Yeah, but it was so jarring to me. That, and having the 40 kids over for a pre-Thanksgiving party. It definitely impacted him.
Diane: Of course. But whatever challenges we have, we grow from, hopefully. So as much as you are sharing that it impacted him in some ways that you wish it hadn’t, I’m sure it helped him develop into the person who he is in many positive ways.
Karen: Yes. And he’s actually made reference to a friend who’s on the autistic spectrum.
Diane: He gets him.
Diane: That’s wonderful.
Karen: That part is true. And I’ve never heard him make fun of someone. Yes, I’m sure it’s rounded out his character, his personality.
Karen: But as his parent … We all wish as parents that we could protect our children from things that we really can’t fully protect them from. I think we did the best that we could. But it was definitely not perfect.
Diane: Nothing is.
Karen: Nothing is. It was also brought to my attention that he may have gone out of his way to be a so-called good child so as not to have burdened us any further.
Diane: That happens a lot.
“I Did Apply Broadly to Agencies I Thought Would Be Suitable”
Karen: Right. So there are all these different things.
Diane: There are lots of years to be on the couch. Just like for all our kids. And you know what? He’ll be able to access the issues more easily than some others.
Karen: I’m sure there were parts of it that accentuated his growth, but there are other parts that I’m sure challenged him because we don’t grow up in one fell swoop, it’s a process.
Diane: And we also don’t grow unless we’re challenged. It’s really the truth.
When the childhood services ended, when Douglas aged out, were you like “I hope he gets into the group home.” Was there a gap or…
Karen: I was very lucky for two reasons. Douglas’s birthday is in September. Had he been born three weeks earlier he would have been denied services at his regular school, and he would have aged out and then needed to transition into an adult program. As it turned out, the vacancy occurred while Douglas was finishing up the final extended year. He was 21. So, the timing ended up working out. But there was a lot of work that went into that. I was very much involved with QSAC, and I had a very good relationship with a top administrator there who, when Doug was 16 years old, said to me I needed to apply very broadly to group homes because he could not guarantee a spot for Douglas. I did apply broadly to agencies that I thought would be suitable, and I did go to visit them. I made appointments, I met administrators, I completed tons and tons of paperwork, I went to meetings at Douglas’ school, often meetings regarding transitioning.
“He Told Me There Was One Spot and They Were Offering It to Douglas”
I remember there was a staff member at Doug’s school, who had a sibling with Down Syndrome. Her parents opted to keep the young lady at home with them until they were physically unable to care for her. Because then they had health issues, I think she was placed when she was close to 50. She made a good transition, but I knew that that was not the most preferable approach. So as painful as it is to go through this process, I did know when Douglas became a teenager and taking care of him was more challenging, that it was something that I wanted to do.
Diane: I remember when you first found out he got into the group home.
Karen: The day that I found out about Doug’s placement was a very, very unusual day—a crazy day at work.
I remember one of my colleagues saying to me, “Karen, go home and have a drink.” When I got home, flowers were waiting for me. It was right before Mother’s Day and Robert had sent me flowers, which was lovely. Within an hour I got the call: “Mrs. Solomon, this is Cory.” He told me there was one spot and they were offering it to Douglas. I didn’t automatically say yes because the only thing I wanted … the one request that I had, was that Douglas have his own room because he had always had his own room. But that was not the case at that time. I told Cory I wanted to think about it. He said to me, “Mrs. Solomon I really suggest you take it … One spot.” And I did.
“One of the Most Bittersweet Moments Was the First Time Douglas Came Home and Then Requested … to Return to His Group Home”
Douglas eventually did get his own room, but at that time he had a wonderful roommate that Douglas was extremely protective of. Douglas would put his roommate’s seatbelt on him and gave him instructions on what to do. He became his big brother.
Diane: How was it getting used to not having him in the house?
Karen: Okay. They asked us not to visit him for the first month. We could call.
Diane: He’s not that communicative. Right?
Karen: We were calling really to speak to the people who ran the group home rather than him because this was a trying period. From what I understand, Douglas was packing up every day, initially. He was ready to leave at a moment’s notice.
Diane: When am I coming home?
Karen: Right. We had sent him to a specialized camp for two weeks at the end of every summer and he did participate in a dude ranch weekend. So …
Diane: He was ready. It was over.
Karen: He was ready to go. They let us know that later. I think Robert had a much harder time than I did. Robert was very, very sad and missed him terribly. I missed him as well.
Diane: Of course. And now it’s 10 years. Right?
Karen: Now it’s 10 years.
Diane: So how do you feel now looking back?
Karen: I do think it was the right move. Rob and I were able to do things that we were never able to do since this happened. We routinely go on vacation. I’m able to accompany Robert when he goes for a meeting to an interesting place. We can have alone time with Evan too in a different way than we were able.
Douglas has grown as well. I have to say one of the most bittersweet moments was the first time Douglas came home and then requested after a number of hours to return to his group home.
Diane: That is bittersweet.
“I Was Thinking About My Parents Regarding Everything Going on with Coronavirus and I Started Crying”
Karen: That was very bittersweet. He said, “I want to go back to the white house.” He refers to our house as the gray-white house and his group home as the white house because it’s made of white shingle.
Diane: As sad as that is, how wonderful it is that he’s so happy there.
Karen: You know you have these pivotal moments in your life? I remember that phone call that I received regarding the availability, that time when Doug said he wanted to go back to his home, the day he was diagnosed, the day he started his preschool program, the day that Robert and I were looking at possible programs for him. I can remember walking into the program we eventually picked. There was a girl with autism in the program. I walked out of the room and started crying terribly because it didn’t affect girls as often as boys. I just was heartbroken, heartbroken.
Diane: Do you still cry?
Karen: On occasion.
Diane: About what?
Karen: I don’t cry as often. I cried recently about my parents. I don’t know why my parents were in my thoughts. It was only within this last week. I was thinking about my parents regarding everything going on with coronavirus and I started crying.
Diane: Did they meet Douglas?
Karen: My mom did.
Diane: Your dad died when you were young, right?
Karen: Yeah. My dad died when I was 26. It was before Douglas was born. Douglas is named after my father. My father was Daniel. I used the D.
“’ You’ll Be Surprised. They Have a Better Social Life Than We Do’”
Diane: I think it’s every parent’s dream to have kids who are independent and able to manage the world on their own. But Douglas is now in a place that he loves and is getting great care. Is he able to stay there for his life?
Karen: Yes. Yes he is able to stay there. I do have meetings with them, where we discuss his progress. He e-mails me several times a week, with supervision, which is fabulous.
Diane: That’s wonderful.
Karen: There’s a wonderful woman who’s part of the team who has suggested that. Sharon, bless her heart.
Diane: So they really want their residents to keep growing.
Diane: It’s not just a housing situation.
Karen: No, they do things … I was actually told by a social worker when I was making the rounds of the group homes, “You’ll be surprised. They have a better social life than we do.” Oftentimes, not of course in this lockdown period, but that’s true. They’re always engaged and doing things. Douglas is very interested in what he’s doing. He looks at the calendar and makes note of what outings they’re having. That’s oftentimes what he transmits in e-mails. “I went here today. I did this yesterday.” I love knowing what he’s doing. He’s as independent as he can be.
“You Want Your Child or Your Adult Child to Be in a Situation Where They’re Respected, Their Needs Are Being Met, and They’re Allowed to Grow and Be Who They Are”
Diane: And do you get satisfaction from that?
Karen: Yes. He’s doing the very best he can with the challenges that he has because he has major challenges. So you want your child or your adult child to be in a situation where they’re respected, their needs are being met, and they’re allowed to grow and be who they are.
Diane: That’s wonderful. That must give you great peace.
Karen: It does give me great peace. But I’m always still involved. I’m involved with the people that are important. They know me, they know that my son’s very important to me, they’re important to me. And I hope that Evan will take over when we are unable to. In the meantime, thankfully I’m able to and I hope I continue to be. I do know that four of the parents in the group home, not in Doug’s specific group home, but in the group homes that they supervise, have passed away during this period of coronavirus.
Diane: From coronavirus?
Karen: From coronavirus.
Diane: Oh wow. Wow. When my kids’ father died, I felt pressure. I can’t die. I mean they’ll be okay, but I have taken on a different kind of meaning than “just a mother.” I put that in quotations because no one’s just a mother, but I do feel a different burden than when Jay was alive. I wonder if you feel that at all.
“I Would Always Encourage Parents to Be Proactive”
Karen: I understand. I remember when Douglas was placed, and my friend Judy invited me and several other friends to visit her in Florida. I had a phenomenal time. But on the flight over I sat with my friend Gail and there was a tremendous thunderstorm. The pilot was having trouble landing and he was circling about. You could see the thunder. Gail thought I was crazy when I told her, “You know, I’m okay.” I felt that Douglas was placed …
Diane: So you could die.
Karen: I could die. I said, “Rob and Evan will take care of themselves.” I said, “Douglas is placed.” I said, “Don’t get me wrong Gail. I don’t want to die. Don’t think I want to die. I don’t. But I could die now.”
Diane: And go in peace. You did your job on this planet.
Diane: You have more to do but-
Karen: I have more to do. I mean look, I don’t think it would have been good for anybody, let alone myself, but that was the thought in my head.
Diane: Before we stop, I just want to ask you if you have any advice for women who have kids they’re concerned about, whether it’s a placement or…
Karen: When I was a teacher of hospitalized children this came up a lot because I dealt with a lot of families who had children who were disabled. I would always encourage parents to be proactive. I would give them lists of resources and make contacts and advocate for families.
No one is going to come knocking on your door to help you, unfortunately. Maybe some of us live in communities where there’s a community involvement to really guide and nurture and help, which really is a wonderful…
Diane: We should hope for that.
“You Learn Things from Other Parents, from Other Families”
Karen: We should hope for that. But realistically, most of us live in environments where that’s not occurring, so I would encourage families to be as proactive as possible, to learn as much as possible, to avail themselves of things that are out there, to make their lives, to enhance their lives and the lives of everyone in the family because all family members are affected. The siblings are… Everybody’s affected.
Diane: And that remember that they too need support, like you did.
Karen: Yes, the support of other moms in particular, because the moms were more active. Yes, you learn things from other parents, from other families.
I did avail myself of all the different things. To be as active as possible because there are things out there to make your life easier because it’s not an easy life at all. When you have to account for every second of your day and you can’t leave someone unattended… I mean, there’s a story to that too Diane.
One time I took a shower. Douglas could entertain himself. He’s wonderful with a computer. He loves television and all that. But I went into the shower, took my shower and he let a woman into the house.
I nearly had a heart attack. I went to the basement to do my laundry and there was a woman seated on the couch. She was barely answering me, so I thought she was crazy. It turns out she didn’t know English well. She was an Italian woman who came from Italy and was dropped off here because her sister made a mistake. My neighbor, my adjacent neighbor who has since passed away, was cutting people’s hair in the house, in the basement.
All she could say to me was … Then I knew what had happened. “The boy, the boy,” meaning Douglas had let her in. That’s all she could say.
Diane: Wow. Interesting. Yeah.
“You Keep On, Keep On and You Never Know Who’s Going to Be the Source of Important Information”
Karen: So the bell rang and Douglas let her in. She knew that she had an appointment in the basement. So Douglas took her to the basement. And he went upstairs to watch television.
You have to account for every day and every minute. I would say to any parent, if you have a problem, reach out to the important people in your son’s school or daughter’s school. There should be a social worker that you can engage with. Some were wonderful, some were not.
Diane: Right. And if you find someone who’s not…
Karen: If you find someone who’s not, there is always somebody who is, and you keep on-
Diane: Keep on.
Karen: You keep on, keep on and you never know who’s going to be the source of important information
Diane: You never know where you’re going to get what you need.
Karen: Right. You never know. So be open.
Diane: I think that’s a wonderful place to end. Be open. Great advice under any circumstance. Thank you, Karen, for being so open with us and for sharing your journey. Give Douglas a hug from all of us!
As always, I’d love to hear from you. Please leave a comment or send me an email
See you April 5th!