With April being Autism Awareness month, I decided to talk Karen into reading Next Stop with me. Then I realized how many people I know raising teens or young adults who are on the autism spectrum. I approached two of them, one brought a friend in, and soon a little discussion group was born. It turned out that we had a lot to say! (Translation: I cut as much as I could and this is still the longest blog post ever.) But the discussion is so full of wisdom and insight from these wonderful women, that it's well worth reading through to the end.
Meet the Moms: Karen, Jen, Maureen, and Mellissa
Karen's sons are ages 21, 18, 15, and 12. "After being a stay-at-home, homeschooling mom for 15 years, I put my kids and myself in school and got my master's degree. I'm now a high school counselor by day in a smallish rural high school. Since Marc (21, and previously diagnosed with autism) graduated from high school, we have been on a very bumpy road trying to help him transition to adulthood."
Jen has a boy aged 18, and two girls, 15 and 12. "I am a homeschooling mama as well as an educator by profession. We are entering our 11th year of homeschooling (for mental health and special needs). My eldest will be undergoing a full pysch. eval. this spring and we are pretty sure that he will show up on the autism spectrum this time around."
Mellissa has three sons 14, 11, and 8. "I've been home with the boys (who go to public school) for almost 12 years and am currently trying to figure out what I want to be when I grow up. Before I stayed home I was a biology research scientist. My younger two boys have been diagnosed as being on the autistic spectrum, but they are both very high functioning. The youngest definitely has more of an "Aspergers" feel."
Maureen says, "Mellissa posted about the book on our Facebook group’s page and it sounded really interesting. I read it in only a few days, which is super fast for me, but then again I am sort of an autism memoir junkie, if I may say that. I have a 14-year-old daughter with Autistic Spectrum Disorder and a neurotypical 17 year old son.
Ali: One thing that really struck me is the author's relationship with her other two kids and how she feels it suffered because of her hyper-focus on David. As a parent of two fairly typical boys, I know that I never feel like I have quite enough time for either of them (or my husband, or my writing, or really anything in my world come to think of it...). I wondered whether Glen Finland's sense of being pulled away from her other children is more true for parents whose children have special needs, or if it's just part and parcel of parenting and the difference lies in the mother putting the "blame" on the atypical child for taking her away from her other children.
Jen: The author's relationships with all of her kids and where she lays the "blame" really turned me off. I have been to hell and back with a couple of my kids and it never made me feel as negative about them as this woman feels about all of her kids. Certain types of special needs are more time consuming/worrying than others but as parents we learn how to strike some sort of system for a more balanced approach so that no one child feels overly neglected. Honestly, the attitude she expresses in the book makes me think that she resents that parenting (of any sort) got in the way of her living the high powered life that she seems to have wanted.
Ali: It seemed like she felt trapped in motherhood. She was so devastated by her 3rd pregnancy--she wasn't ready for that third child. I think that a lot of the book was her grieving for the life she felt she could have had.
Jen: I agree that having an unexpected 3rd child definitely had an impact but MANY mothers find themselves in that situation and get past that "trapped" feeling. I greatly admire and respect the author's openness and honesty about her feelings, good and bad, but the negative really seems to overwhelm the positive. Now, I have not had to deal with the severity of issues she does but it really seems like she focuses on what her son can't do and is surprised when he does do things on his own.
Ali: I think her negativity comes from fear. When she writes about David's failure to gain anything from the program in Florida, saying that the one positive aspect of it was that she got 2 years to reconnect with her husband--I see a lot of fear on her part, that *she* will never be free of David's autism.
Maureen: I am relating so much to Jen's reactions. I have to say, I was struck by the weird dichotomy between her focus on what David can't do and the fact that she lets him loose on the mean streets of DC. On the one hand, I feel like the kid is WAY more capable than she gives him credit for (he has a driver's license, for god's sake) yet she doesn't seem to believe in his abilities. Then why oh why does she give them that incredible amount of unsupervised, possibly dangerous freedom? This the crux of my overall reaction to the book; and I'm not an overly protective person (it may sound like I am!) I agree that she is refreshingly honest about her feelings, good and bad, but she does come off as super self-centered in that comment about reconnecting with her husband.
Jen: I think Alison hit the nail on the head when she said that the author is afraid that she will never be free of the responsibility of David's disability. Unfortunately it is a fear that she has exaggerated in her mind thereby causing herself and her family more stress than need be.
Karen: I have a hard time connecting with mothers who write books about how difficult it is to be a mother. Of course it's difficult. Obviously, if you have more than one child, your time has to be split among them and no one gets all of you. In Glen's case though, it seems that because she couldn't give all her time or attention to Max and Eric, she ended up giving nearly none of it. In the Love Me Tender section, Glen bemoans not being able to give enough of herself to the other boys, then she immediately jumps to the need to take time for herself and starts writing stories again. Not that I think taking time for yourself is a bad thing. I'm all for it. I'm just saying that if she really regretted not giving enough of herself to the other kids, she might have put that ahead of her writing.
Jen: Karen, I had that exact same thought in regards to her writing. She seems rather oblivious to how her own choices negatively, or positively, affect her family's emotional state. I am a firm believer in parents pursuing their own interests but there are always times that parents have to put their own interests/needs aside to make time for kids going through a hard time. I think this is particularly true for parents with special needs kids.
Ali: In the Q & A at the end, the first question is what is the book about, and the author replies that it's the story of the summer she took her son around on the Metro. This is what I had expected the book to be, since the cover blurb says the same, but IMO it wasn't any more the story of that event than it was the story of David running a marathon, or David getting a job at the ball park, or David getting a scooter. Was it the story of them riding the Metro together, in your mind? Was that project a key turning point in their relationship? Would the book be fundamentally different if they hadn't embarked on the Metro project?
Jen: That part confused me, too. I suspect that originally that summer is what the book was about but that the overall story grew and expanded once she really got writing. Personally, I found the organization of the story hard to follow as it seemed to jump around a lot.
Karen: The author makes a big deal about the Metro being David's beginning to have a "shot at a real life he can call his own." I'm not sure David really wanted to be on his own with nearly the same fervor that his parents wanted him to. That summer on the Metro, David relished the freedom of choosing where and when to ride and wander or run around D.C. But, where did he ever really express a desire to move out? I think his parents wanted him to want to have a life of his own, but it's not the same thing. Lots of neurotypical young adults live with their parents well into their mid twenties. I hope that my autistic son is able to function on his own one day, and I work to help him develop the skills so that he can. But, realistically, while other kids move out in their early twenties, I realize that Marc will likely be much closer to thirty before he is ready. He has been delayed in developing many other skills. Why should that be any different?
Jen: That's a really good point Karen. I do remember thinking something along those lines as I was reading. That these parents seem to have no clue what David wants and that most of what they emphasize is what *they* want or need.
Ali: I was struck by that when they took him to the group home. They asked him afterwards what he thought, and he said that he liked it--"Except for all the people." I would have reassured him, "That was an open house, so there were a lot of visitors. It wouldn't be so crowded if you lived there." Instead, their reaction was, "Yeah, he's right, it's totally the wrong place for him." I didn't feel like they were looking at it from his perspective at all.
Jen: I just have to say that, based on the last third of the book, Glen has some amazing sons that she should be very proud of. David proves to be more capable than she ever expected and the two other sons really step up to the plate when their brother needs them. That part of the book warmed my heart as not all siblings are willing, or able, to help support and care for their special needs family member.
Karen: I agree, Jen. I know the book was about David, but I would have liked to have gotten to know Max and Eric better. They obviously feel a deep sense of connection and responsibility for David, but we didn't get a sense at all of how that evolved in their family.
Ali: I would have loved to hear more about Eric and Max's perspectives on having David as a brother. I'm sure she wanted to protect their privacy by not exposing too much of their personal lives in the book. In the Afterword, she said that upon hearing of her plans to write the book, Eric cautioned her, "Don't embarrass him." I thought that was so sweet and showed so much empathy. It really touched me.
Karen, I'd be interested to hear any experiences or concerns that you've had with Marc that the book brought to mind. Marc is much more communicative and emotionally connected than David, though, so it kind of feels like comparing apples and oranges.
Karen: It's like Glen said several times about how if you've seen one autistic person, you've seen one autistic person, though there were some times where she was describing David that I had an ah-ha moment about Marc. Like when she talked about how David always lives in the present. One of my frustrations with Marc is how unconcerned he is about doing poorly in college. Failing college classes only upsets Marc when I call him out on it and force him to have a discussion about what is going on. Otherwise, he's perfectly content to ignore the unpleasantries and carry on as if he has no cares. Reading that part of the book gives me another way to look at those behaviors.
I had high hopes that the book would give me some ideas for helping Marc transition into adulthood. Like you pointed out, Marc and David are pretty different. I think Glen and I are pretty different too. While I would like Marc to show some concern and interest in his future, I don't feel the sense of urgency to get him living independently that Glen expresses in the book. For now, Ray and I have told Marc that he is welcome to live with us as long as he is in college or working. He makes dinner for the family one night a week and does some cleaning chores around the house. Maybe it's because he's my oldest, so I'm not feeling any empty nest urges, with three younger brothers still at home.
One area where I think Glen and Bruce could do better for David is to help him explore his interests. I am confused by their need to push him into a menial job that he will likely hate. I don't know how much he gets for social security disability, but will a few hours a week at minimum wage really help? The volunteering with the animals was great. How about helping him find something to do with his maps or start a running club for boys at the local school? If Marc doesn't get serious about college, I am going to push him into getting a menial job; but that's because I want him to learn what is available in the working world to him without a degree. I think Marc is capable of getting a degree and having a career. David probably isn't.
Ali: I think you're right that birth order is hugely important. When I was reading Glen's book, I found myself wondering how things would be different for David and his family if he had been her oldest instead of the "oops" #3 child. Or, alternatively, how they would be different for Marc if he were your 3rd or 4th.
Jen: Those are some great comments Karen. I think a lot of parents are rather limited in their views of what's available for their kids as job/career choices; special needs or not. I need to ponder that whole living in the moment concept as one of my kids is like that and it drives me bonkers.
Ali: It is so hard to let our growing-up kids make their own choices. I'm right on the verge of this phase of parenthood (my oldest is 16) and I have so much trepidation. I can only imagine how much stronger that would feel if I were concerned about his competence going into adulthood.
Jen: I agree Alison. Watching my eldest struggle to make his way in the adult world is one of the hardest things I've ever had to do.
And I think that's what Next Stop is truly about--the process of letting go. Letting go of preconceived expectations, and of control over our lives, and of people that we love.
Has autism affected your life? I'd love to hear your stories or reactions to our discussion in the comments.