Nat, though seriously involved with his autism, has a good life. He lives in a small house with three other young autistic men, and they are overseen by kind, caring staff and a wonderful house manager. The house was started by three of the four families almost two years ago. I had the vision of such a place, a home near me, in Boston, close to parks and YMCA’s, restaurants, shows, etc. Roommates who were his age and had similar interests and similar challenges. They could learn from each other. They could grow together. Some people feel that there should be higher-functioning role models around for their lower-functioning children to model from, but I don’t feel that way. I think people are people and you can find something good and important in just about anyone. If you are living with that person, that is even more true. Two of the other young men would probably be referred to as “non-verbal,” and yet Nat clearly relates to them. They react off each other. They have fun together. They are his bro’s. Talking has very little to do with their happiness. However, tonight a bit more social savvy would have worked wonders for Nat.
Tonight was Nat’s house holiday party. All the families came, even siblings. We brought Ben, who seemed to enjoy himself enough with paper and pen, as well as chatting in front of the football game with one of the dads. Christmas songs were blasting. Hot dinner smells floated from the kitchen. Ned played with the staff’s little kids and the moms were all running around opening packages of goodies, setting up the guys and the other kids with gingerbread men to decorate. It was noisy, chaotic, and full of good cheer as a holiday party is supposed to be.
When we all sat down with our paper plates loaded with potatoes, mac and cheese, sweet carrots, and ham, I stood up to make a toast to the staff. I really feel good about these guys, who work so hard running all aspects of our sons’ lives, and seem to really know our guys very well. I love when I learn new things about Nat from a staff member there. Yonel even went with us on a doctor’s appointment once and really helped supplement my info for the doctor. Usually John, the house manager, comes to the doctor appointments and these days the docs talk to him more than me!
At the party, I tried to do all this justice but I know I mushed my thoughts together because of all the emotions in the room. I did manage to mention how I loved the families and the way the house is working out. We have had our bumps and false starts — like a real family — but things feel pretty good right now.
We did a Yankee Swap, which was my idea, because I wanted the parents, staff and guys to all play something together, like the pumpkin-carving we did at the Halloween gathering. In the Yankee Swap, everyone buys a $10 gift and wraps it. You don’t know who brought what. Then you each get a number and you choose a present from a pile and then you get to swap it with someone else’s — and they have to give it to you, whether they want to or not. It usually makes for a lot of laughs because men will get stuck with a pack of nailpolish (like Joe, one of the dads, did!). The thing is, with a group like us, no one is going to force any of the guys to give something back if they clearly love it. It’s always kind of hard to buy things for Nat, as I imagine it is for the other three guys, unless it’s candy.
And so… Nat’s beloved roommate D opened the sea-salt chocolate toffee we’d brought. Everyone was oohing and ahhing because of course that stuff’s lethally delicious. I didn’t think anything of it when Nat unwrapped an air hockey game, which seemed like an amazing thing to get for just $10. Nat hit the pucks around and I thought, “Wow, he likes it!” He does not usually look at the stuff he’s unwrapped unless it is food, but he seemed vaguely into the air hockey. I asked for batteries so we could try to play.
But all of a sudden Nat was asking for batteries over and over again, and hitting himself and getting upset. It didn’t take long to get him to say what it was about: D’s chocolate candy. Of course. Nat may have liked the hockey, but even $100 would have gone unwanted when you are Nat and your roommate has chocolate! If this had been a “real” Yankee Swap — and if Nat and D were not heavily disabled and truly understood what to do — Nat would have gotten it and it would have been funny. But instead it was a little heartbreaking. Maybe we could have tried to do the real swap thing but it seemed like it wouldn’t have worked.
John, the house manager, came over to calm Nat down, and Nat was really red, but he started breathing deeply as John was instructing him too. Meanwhile I was thinking about the candy. He had said he wanted the candy. That was great, because he expressed himself clearly and accurately. Ultimately, John did get him a piece. Nat went into the kitchen to eat it quietly. The game was soon over and we started to clean up. I saw Nat on the couch and he was covering his eyes, as if he were still upset. John was with him, and he said he was fine. But he didn’t look fine to me so I came over to him and offered him cookies. Mommy and food to the rescue. Nat ate them and seemed better by the time we were getting ready to leave. We hugged goodbye and left with our odd assortment of loot and full stomachs.
I would say that it was a wonderful party but I did have that little moment of hurt for my dear son, who still can’t always get what he needs on his own. But then again, who can? And has there ever been a party with kids involved that does not have some kind of squabble? Bottom line: Nat has a lot of good people around him — an extended family, friends who understand him, and people to help him smooth out the sore spots. He has many years to grow and learn. I guess we all have to learn to deal with the small bitter taste of disappointment now and then. Good thing Nat could chase his with a piece of chocolate.
Here is the agenda for Nat’s holiday party. I just got from Nat’s house manager, in regard to the holidays. My heart is just brimming with thankfulness.
(Of course they asked if we wanted to do a Chanukah activity, but I declined because it’s already over! But — I will contribute blue and silver decorations!)
Appetizers- as people arrive
Toast to the guys and the home
Dinner buffet style at beginning part of the party
Standing up the Tree
The guys will decorate their tree on Monday Night, I feel this will leave room for us to do the other activities but also provide them a time to decorate the tree the way they would like it without too many people in the house.
Ginger bread/craft activity graciously provided by M’s family
Yankee swap for anyone who would like to participate
The Yankee swap is a $10 limit, please bring a gift that could work for either Gender, the guys will participate in the same Yankee swap as all of us. For Small children would not be doing the Yankee swap please get back to me with a head count of who is joining the group. There will be a small gift under the tree for each of them to unwrap as well.
Below I have listed the food that we will have and ask that if there is anything you would like to sign up for to contribute it would be appreciated, and if there’s anything else you want to bring that I did not list please feel free to message me back what you will bring.
Cheese, crackers and pepperoni
Tortillas and salsa
Sparkling grape juice
Ham/Pineapple and Cherries- Holly
Green bean Casserole
Corn, Candy Carrots, Spinach- Holly
We are really looking forward to celebrating the holidays in our new home!
How’s that for a lovely holiday party?
I wrote an essay, published by WBUR/NPR, related to the new findings that autism may be detectable as early as 18 months of age. I’m not convinced that this is the best form of research we could pursue. Autism resources are frontloaded into the early childhood years. As Nat’s mom, I gotta ask: “What about the grown-ups, and all that they need? What works for them?”
Part of you pours out of me in these lines from time to time.
My husband Ned just had part of his thyroid removed — a benign nodule had swollen up there — and he has written very eloquently about it. This was the first kind of surgery we have experienced as a couple (together for 30 + years) and even though the cutting and recovery happened to him, we were steeped in the fear and waiting together. We’ve been through autism and other woes, and I’m happy to the depths of my soul that we seem to be stronger than ever. I’m beyond grateful to God and fate and the randomness of the Universe that put me together with this wonderful, unique man; that he is alive and I can be with him for more time. I was head over heels in love with him way back at Penn in 1981, and in 2013 I still am, even more.
This was the man who was instrumental in getting Special Olympics off the ground. Watch this beautiful video and put Special Olympics on your list of worthwhile charities this holiday season.https://www.youtube.com/watch?v=UANJfuEWckM&feature=youtu.be
Massachusetts Families Organizing for Change (MFOFC)
in partnership with
Massachusetts Down Syndrome Congress (MDSC)
“A Full Life Ahead” ~ a series of monthly workshops for parents and guardians
of young adults with a disability. The series focuses on transition, employment, housing, friendships and other topics that will lead to interdependent, full lives
in the community for young adults with disabilities.
Wednesday, November 20, 2013
What Makes a House a Home?
7:00 – 9:00 PM
20 Burlington Mall Road — Suite 261
Burlington, MA 01803
» » Information on Housing Connections ~ Chris Williams« «
Parents, Robin Kantrowitz and Susan Senator will discuss the ups and downs, challenges and successes in setting up and maintaining living arrangements for their sons. Family dynamics, housemates, staffing, cultures and customs all play a role in what you need to consider when putting the pieces together.
Jeff Keilson, Advocates Inc., will discuss the variety of options, including Adult Family Care, Shared Living, group home, guidelines and best practices, issues between families, and collaboration as well as issues that arise between families and the provider agency. Panel will discuss the ongoing journey to ensure quality of life for their loved ones.
Please RSVP to email@example.com Space is limited to 50!
Mark your Calendar – Upcoming AFLA series workshops
? January 29, 2014 – Community Mapping ? March 26, 2014 ? April 30, 2014
781 665 5179
I am writing a fourth book, my third autism experience book. The working title is: “Autism Adulthood: Living a Fulfilled Life on the Autism Spectrum.” The book is to be largely based on interviews with people up and down the spectrum and their families. I will weave in my own narrative with Nat’s experience throughout the book. I decided to try interviewing Nat. I typed the questions and read each one to him, one at a time, with a lot of silent waiting so that he could come up with the answers. He would then say his answers and start typing. He would hesitate, and I would say, “Go ahead, Nat, type it.” And he would. Here is the transcript to the interview:
Interview with Nat
Do you work?
What is your job
Job is like caregs shas
Do you like what you do?
Do like do
Do you have friends that you do things with?
Do you exercise?
Exercise do tradml
What do you like to do at your home?
I am on a Task Force headed up by State Rep Tom Sannicandro and Dr. Dana Mohler-Faria, President of Bridgewater State University. The Task Force is having four hearings (the first of which was today, sorry to be late with this announcement), in different parts of Massachusetts, to hear testimony from the public about the need for and matters pertaining to the inclusion of people with developmental disabilities in Massachusetts state colleges and community colleges. Here is a press release to explain in-depth and for all upcoming hearings:
Higher Education Task Force Focuses on Including Students with Disabilities
Higher Ed administrators and disability advocates prepare to tour state for public input
FOR IMMEDIATE RELEASE Contact:
October 8th, 2013 Ross Richmond (617) 722-2013
(October 8—STATEHOUSE) Rep. Tom Sannicandro (D-Ashland) announced Tuesday the formation of a Task Force on College Inclusion for Students with Intellectual/Developmental Disabilities. The Task Force will solicit feedback and comments from the public, including administrators, teachers, students, parents, and others about expanding opportunities for students with disabilities to be educated alongside non-disabled peers in colleges and universities. It has set dates for four public meetings to take place across the state
In the end, the Task Force will release a report on its findings, as well as legislative recommendations.
“Bringing students with intellectual and developmental disabilities into our colleges and universities is the next step in the goal of universal inclusion of this population in our society,” Rep. Sannicandro, Chairman of the Joint Committee on Higher Education, said. “We have come far in terms of how we include people with disabilities in our community and we are saying today that the Commonwealth is ready to do more in higher education.”
“If a student has a desire and drive to attain a college degree, no obstacle should be in their way to achieving their dreams,” Senator Moore (D-Millbury) said. “Studies have shown inclusive higher education settings create better outcomes for Intellectual/Developmentally Disabled student, including increased employment opportunities and fewer supports needed later in life. The Commonwealth must continue to ensure that a college education remains accessible, regardless of a disability. We look forward to hearing ideas from people across the state to inform our recommendations to the legislature to better include students with disabilities in our higher education institutions.”
Inclusion of students with disabilities in higher education has many benefits including professional development and employment.
Two years ago, Congress authorized funding for the formation of a program called Transition and Postsecondary Education Programs for Students with Intellectual Disability (TPSIDs) to create inclusive opportunities for students with disabilities in higher education. In just two years, 792 students enrolled in 42 participating colleges. Of those enrolled, 236 held jobs, 82 percent of which paid at or above the minimum wage. Prior to the TPSID program, 45 percent of those students had never held a paying job.
Many students who did not have access to TPSID instead participated in segregated work environments, often at sub-minimum wage, and rely more heavily on public assistance.
The Task Force seeks to expand inclusive college opportunities, allowing students to reach their full academic and employment potential.
The Task Force is made up of 15 members:
Legislators include: Rep. Tom Sannicandro, Chair of the Joint Committee on Higher Education, Sen. Michael Moore, Chair of the Joint Committee on Higher Education, Rep. Kim Ferguson, Member of the Joint Committee on Children, Families and Persons with Disabilities.
Higher education administrators and professionals include: Kumble Subbaswamy, Chancellor of University of Massachusetts Amherst, Dana Mohler-Faria, President of Bridgewater State University, Charles Desmond, Chair of the Board of Higher Ed, Richard Doherty, President of the Association of Independent Colleges and Universities in Massachusetts (AICUM), Michael Stein, Executive Director at Harvard Law School Project on Disability, Debra Hart, Education Coordinator at the Institute for Community Inclusion at University of Massachusetts Boston.
Department of Disabilities Services includes: Commissioner Elin Howe.
Disability advocates include: James Brett, President and CEO of the New England Council and Chairman of the Governor’s Commission on Intellectual Disability, Julia Landau, Senior Project Director at Mass Advocates for Children, Susan Senator, Disability Author and Director of Outreach at the Community College Consortium for Autism and Intellectual Disabilities, Deborah Smith-Pressley, CEO and Founder of Garrett-Pressley Autism Resource Center.
Student representation includes: Brian Heffernan, Student at MassBay Community College.
Dates of the public hearings:
Friday, November 1st, 10:30-12:30AM, Bridgewater State University, 66 Hooper St., Burnell 132A, Bridgewater, MA 02325
Friday, November 8th, 12-2PM, Harvard University, Harvard Law School Project on Disability, Austin Hall 304, Cambridge, MA 02138
Friday, November 15th, 3-5PM, Quinsigamond Community College, 670 W. Boylston St., HLC Building, Room 109A&B, Worcester, MA 01606
Friday, November 22th, 9-11AM, University of Massachusetts Amherst, Lincoln Campus Center, 1 Campus Center Way, Room 163C, Amherst, MA 0100
This is a terrific organization founded by friend and mentor Cathy Boyle. If you live anywhere near Framingham, Massachusetts and you want to know about housing for someone with autism, try to get to this one!
Autism Housing Pathways (AHP) will present a full day workshop on housing on Saturday, December 7th, at Advocates, Inc., 1881 Worcester Road, Framingham, MA. Come prepared to roll up your sleeves and work! The goal is to end the day with an idea of what benefits your family member may be eligible for, what you can afford, and what models might be applicable to your situation. We will be completing questionnaires and worksheets, as well as Section 8 applications. You will not need to share this information with anyone; it is for your own personal use.
Attendance will be capped at 25 participants. While prior attendance at one of AHP’s presentations on housing is helpful, it is not necessary. Please RSVP to Cathy Boyle at firstname.lastname@example.org.
The day will run from 8:30-5:15. Light refreshments will be provided, but you will need to bring your lunch. This event is free, but donations are requested. Anyone donating $35 or more will also receive a one year membership to Autism Housing Pathways.
If you can get to Concord Massachusetts tonight 10/24, to Minuteman Arc (see below), and you are seeking info on putting together a home for your adult child with developmental disabilities, go to this fantastic workshop. Doreen Cummings is the presenter and she is someone I’ve known forever, and she knows it all about housing in the adult autism/DD world. This is one of those workshops that will have accessible info for you. If you get overwhelmed, write it down and contact me for help: email@example.com I’ll do what I can! Here it is. Go and I’ll see you there tonight!
Crafting a Home for Your Child (without DDS funding)
A Free Parent/Guardian Training
Doreen Cummings, Director of Program Development at Jewish Family and Children’s Service, and Sara Freedman, Director of Community Programs, will speak about the homes that they have created that utilize financial resources other than from the Department of Developmental Services e.g. use of Group Adult Foster Care, SNAP and Section 8. JF&CS strives to serve the population of those who are not eligible for DDS services or who are not a Priority One for DDS residential services. This will be a good opportunity to learn about what they offer and speak to her about what you may be seeking for your child.
Date: Thursday, October 24, 2013
Time: 6:45-8:45 P.M.
Place: Minute Man Arc for Human Services,
130C Baker Ave. Extension, Concord, MA
To register for this workshop, R.S.V.P. to Michele Klein: MKlein@… or 978-287-7900.
Please include your phone number when registering.
Here is a plea for action that came my way via autism advocate Cathy Boyle, who founded a wonderful organization called Autism Housing Pathways. I have edited a little bit for expedience:
****How do autism families figure out the financing for their adult child’s housing?****
While there are a number of programs aimed at providing financing for lower-income and first-time home buyers, families creating housing are largely treated — unfairly — as purchasers of vacation homes.
However, there is one mortgage product aimed at these families: Fannie Mae’s Community HomeChoice, a variant of Fannie Mae’s MyCommunity Mortgage. HomeChoice permits family members to be considered “non-occupying co-borrowers.” This means their income can help, in that the family’s income can be considered in determining the ability of borrowers to repay, while still allowing the individuals with disabilities to be considered low income, and thus qualify for the program.
Here is the important part: Community HomeChoice allows individuals with disabilities to put 3% down, and only $500 of it has to be their own money; the rest can be from family members!!!
Unfortunately, currently in Massachusetts there do not appear to be any mortgage lenders offering HomeChoice. Fannie Mae does not have the ability to identify lenders offering specific products. Most (if not all) Massachusetts participants in MyCommunity do not engage in manual underwriting, which is necessary to use the HomeChoice option.
Cathy Boyle, who sent me this notice, has been in discussions with officials at MassHousing regarding the possibility of MassHousing working with a small group of lending institutions (probably 6 or 7) scattered around the state, to offer HomeChoice. There is some openness to the idea. She has been told that it would be helpful to get as many public comments as possible on MassHousing’s draft strategic plan asking for this option.
MassHousing is accepting public comments until the close of business on November 8th. You can comment here, using the talking points listed below.
* Individuals with disabilities and their families need a mortgage product that has a 3% down payment and that recognizes the need for family members to help financially
* Fannie Mae’s Community HomeChoice is such a product
* Community HomeChoice does not appear to be offered by any lender in the state
* MassHousing should work with a small group of lenders to make Community HomeChoice available throughout the state
* Such an initiative would fit into MassHousing’s proposed objectives of expanding housing options for special populations and expanding home ownership opportunities for underserved populations
If you would, please cc Cathy Boyle at firstname.lastname@example.org on your comments, so she can have a running total of who has commented.
Thanks very much,
Autism Housing Pathways
And me, Susan Senator
People ask me where do I get the energy to do this and that. I truly do not understand this question and it makes me feel like I’m a little bit of a freak. But you know what? I am! That’s the answer. I am not normal. And like the bumper sticker says, it is genetic. I inherited it from my kids.
But — yay. Because my children really set me free. From Nat I learned how weird and utterly unlike everyone else a person can be. (My therapist would not like my word choice, “weird,” but I calls ‘em as I sees ‘em. Weird doesn’t have to mean undesirable or bad. I just like it better than “quirky.” It is stronger than quirky.) There is no one I know who is as (outwardly) weird as Nat. He just is his own Nat self all the time and I am very envious of that. It took me years to be comfortable with who I am and I don’t know if I will ever be as out-there-myself as Nat is. Sometimes I cringe for him, sometimes I worry so much about his oddness, his eccentricity, his mannerisms and how people will stare at him but by and large the world has treated him very well. People who see him love him. I think they know his sweet nature almost immediately and perhaps they, too, admire his openness to the world. While the stereotype tells us that people with autism are closed, I find with Nat the opposite is true. There is no one who is more openly him than him. He doesn’t hide from the world, he is right in the world’s face. The rest of the world — including me — don’t always get what it is he’s showing but nevertheless, there he is.
Ben, the youngest, is the toughest nut to crack. It may be that I feel the most like Ben, of all my children. I understand his shyness and his dark wonder at the world. He wants to understand everything very deeply, even if it is difficult to face. He has a sharp bullshit detector. With Ben you have to be at your most authentic or he has no use for you. He may not express that in words, but he draws it, he paints it. His art will break your heart but will also make you glad you are alive. Ben is chiarascuro impersonated. He teaches me how to not be afraid to go there, for the beauty he finds is indescribable.
And Max. Well, Max I think has set me free above all others. Like his father, he has learned how to be in the world comfortably. He takes people as they are and merely adds them onto his gigantic entourage and makes them feel lucky to be a part of his life. When you look at the world from Max’s point of view, you feel like anything’s possible and you don’t feel burdened by that possibility. The other day I got to see how this works.
Max had come home for my birthday weekend. We were planning to go to King Richard’s Faire as part of my birthday celebration. He and I decided to go to The Garment District, a vintage clothing-costume shop in Cambridge. We wanted to get a few things to embellish our costumes. I was still uneasy about dressing up in Renaissance garb — I didn’t want to feel silly. But on the other hand, I’ve wanted to do that my entire life. I do not come from a family who knows much about dress-up; I had to teach them. And from that I learned that it was hard to just go ahead and have costume fun. But as an adult I have learned slowly. Starting with dressing up for Halloween to take the kids trick-or-treating, and then when I became a bellydancer and collected costumes, I have really become someone who does dress in costume. But never much in public.
Inside The Garment District, I pulled out costume after costume, pleasure warming my face, but then reality would come down like rain and I would put the stuff back, thinking, “Yeah, but I’d look ridiculous. I’m too old.” Then we got to the Fairy Corner. There were flowered, beribboned headbands, wings of every color, floral combs, angel fluff stuff and I just could not leave. I gently touched the sparkly stuff, and I muttered, “But aren’t I too old?”
Max suddenly said, with only the faintest trace of exasperation, “You think that too much.” And I felt the rain just lift. Max had brought in the sunlight and I realized I could do just what I want. It was completely okay.
Next morning we all woke up and got to work on our costumes. Well, not Nat. He was going to the circus with his social group — a perfect alternate activity for this family. Anyway, Ben had elf ears and a long brown cape. Max wore a leather aviator’s cap and the black cape he’d bought at Garment District. Ned did not dress up, and that is his right. I pulled out sparkly gauntlets from my pink and red bellydance costume and drew them on over a deep blue velvet Laura Ashley dress. I slipped a magenta bellydance skirt over the skirt of the dress and put on long hair extensions. Perfect.
When we got out of the car at King Richard’s Faire, I saw droves of kindred spirits: adults and children dressed as knights, fair ladies, elves, monks, strange magical beasts, kings. We all marched through the gates into the old fashioned village, swaggering, laughing. Everywhere I looked, happy faces. Grown ups leading their children, and in my case, children leading the adult, showing her how to let go and just be. Everyone around us had that light in their eyes, the shine of people being who they are. Even if it meant being entirely disguised in Renaissance garb.
I keep going to an image of Nat from yesterday when he was home visiting, of him sitting on the couch across from me, watching. Waiting. He was waiting to be told what would happen next. If we told him nothing, then nothing would happen. He would just continue to sit, watching, waiting.
I see this image of Nat, perched, unoccupied, and a softly creeping sadness wraps its way slowly around my heart and throat. I try to move away from it, to detach my body from its long sticky reach but it is there nonetheless. I have been running from this picture for two days now, maybe longer. In the middle of organizing my third autism parenting book, my creativity chokes and withers in the face of Nat and his expectant eyes, as wide and blue as the sky around us. I am haunted by that open, trusting look he gives me. Don’t write that, I hear. Write me instead. Tell me what is, what I am doing. What is next.
Horribly, I ignore him sometimes. I can’t do it. I just can’t always do it. Just as when he was a little boy and I was told to interrupt his self-stim talking and “give him a model of something real to say,” how horrible and judgmental and huge a task. How utterly unachievable. I felt/feel that I must live for both of us. Just like when he was a baby growing inside me. Eat for two, breathe for two (as the Natalie Merchant song goes). It is an incomprehensible task.
I’ve been raised (growing up with Nat, that is) to believe that he needs. Constantly. That it is up to me to give him something. A frame within which to live. Structure. “They” need structure. So where does structuring his day end and turning him into my puppet begin?
I think that what is making me sad about this staring, waiting Nat is that this passiveness is the disability. This is the thing I can’t fix. Because, thank God, he can breathe on his own, eat on his own, walk, communicate (somewhat), and even work. There has been enough intervention and education and especially love and work to help get Nat to be able to do so much. But it feels like there is no amount of anything that can get Nat to stop waiting for others — all of us who have trained him to listen to us and learn from us — and just go ahead. That mechanism comes from within and I don’t know how to fix it or how to stand back and let it — be?
My son W will be turning 13 in January. He has limited communication skills and in many ways is like a younger child. He probably falls in the moderate to severe range on the spectrum. I try to encourage his independence. He does chores around the house. It has been recommended to me that I steer him away from some of the things he likes that are for younger kids. For instance, he is perfectly happy to sit and watch Sesame Street. He will go on You tube and pull up Teletubbies and Caillou.
We recently attended a birthday party for a very high functioning 11 year old girl. She is obsessed with animals and bugs. It was a reptile themed party. There was a demonstration where they pulled all these reptiles out of a box and the kids got to hold them and learn about them. It lasted an hour and W did great. He attended, he held everything. He didn’t react much but he participated. For the rest of the party he sat on the floor and played with the girls 2 year old siblings’ toys. I’m not sure what else he could do. He cannot have a conversation and is emotionally a lot younger than the other kids. I don’t think he has any / many interests to share anyway. Staying at the party allowed my 10 year old daughter and I to socialize.
I half think I should just leave him alone. I’m not sure what to replace these shows or toys with. It’s what he likes. On the other hand, will he be 20 and playing with jack in the box? What does Swami think?
Thank you for this forum. D
The Swami understands and recognizes the pain of not knowing how much to try to change and how much to accept/let be in our kids. I struggled so much with this when my Nat was younger. I still struggle with the question: “Is it okay to let him sit around or pace half the day on weekends he’s home, or should I be engaging him more with constructive (read: neurotypical) activities?”
You can probably see where I’m going here. I paid special attention to your statement: “I half think I should just leave him alone…” This is one instinct to consider and give credence to. Our autistic kids are atypical; they are wired differently. They like different things than neurotypical people. That is a fact and it does not mean their preferred activities are wrong. Even if common thinking is that the particular activity is not age appropriate, I have to ask, “How is such a judgement decided? Who died and made Mattel or Lego or television programming boss?” Do psychologists get together and tell television shows and toddler toy manufacturers what is what? Why do they put those stupid depressing ages on the box? Why do we pay attention to it? You like what you like. To tell you the truth, the Swami still likes to dress up in gowns and high heels, only now, they are my own and not my grandmother’s. My “typical” 21 year old still likes Pokemon and thinks Spongebob is awesome.
If, indeed, W at 20 still plays with a jack-in-the-box, where is the tragedy?
On the other hand, if you can find ways to expand his world, and give him more activities to enjoy, go for it! I think it’s great that he enjoyed the birthday party, as well as the 2 year old sibling. Friends, no matter what age, are friends. People are people. We love what we love, who we love. As long as we love, we are doing great. That goes for W, your wonderful unusual boy. Swami says: enjoy him and learn from him all about a different kind of mind!
Because of House Republican behavior in forging ahead with this particular shutdown, our very democracy is now at stake. This is not how our country’s checks and balances work. We have three branches of government in this country and all three have already spoken on Affordable Care Act, aka “Obamacare.”
Steve Almond’s piece in today’s “Cognoscenti” column at WBUR/NPR online is an excellent explanation of what is at the heart of the Republican resistance to the Affordable Care Act. What is at stake here, because of this blackmail on the part of the House Republicans, is indeed the American democracy. I say this because the facts say it, too. Obamacare is already the law of the land. It passed as a law by Congress in 2010. The Executive Office branch of the government (the President) signed it into law. Multiple legal, Congressional efforts to repeal it, via the Legislative branch of the government (members of Congress) failed. The Supreme Court, the Judicial branch of the government, upheld it. It is now as much the law as Civil Rights, or Women’s Right to Vote.
The Conservatives lost this one. Not just once, but many times. But they are now radicalizing in their methods. And their behavior is a threat to our democracy as we know it. Now the House Republicans have shut down the government and are refusing to fund us (the people and our programs) and that is new and destructive to the way this government actually functions. This behavior could then pave the way for any branch of Congress to threaten shutdown for any law. What’s to stop Democrats in the future from threatening shutdown if the Republicans don’t allow better gun control, for example? Or how about another Republican shutdown to rescind Roe v. Wade? Or Americans with Disabilities Act? Or Civil Rights?
The real danger here is indeed “too much government,” in the sense that House Republicans, a part of one branch of our government is overstepping its rights. The House Republicans are seizing power away from the other two branches in shutting down government funding of programs, because the other two branches have already acted on this law (Obamacare). Affordable Health Care for All is already the law. It is not up for conjecture. Not according to the Supreme Court, the President (Executive Branch), or even Congress itself (see 2010, making Obamacare official law).
The Radical Right is no longer playing by the rules. This particular shutdown state of affairs is poor sportsmanship and worse, dangerous precedent.
I write for our NPR affiliate station, WBUR, and last week 9/25, this piece was published.
This piece of mine was published in the Jewish Advocate today, October 2:
My two sons
I t’s the New Year, and autumn, and all of this usually hits me right in the face, not gracefully at all. Where others rejoice in the way summer ends in bountiful harvest and blazing color, I feel loss.
In the past three years, fall has become that time when my two older sons move back to their own homes, and I have a hard time with that. When the boys leave, they suck everything out of the room – including my peace of mind. Although Nat, my oldest, goes back to his group home in Boston every weekend, when it is coupled with my middle son Max resuming college in New York City, their exodus feels especially sharp.
My two adult sons could not be more different, and yet when they go, my anxiety seeps in for the same reason. It’s all about how well they can live on their own. I cannot stand not knowing if they’re going to be OK.
Nat’s group home is nice enough, but the budget is tight and staff oversight is sometimes erratic as a result. This may have played a roll in an alarming weight loss in Nat. He is severely autistic and cannot tell us that he is hungry or in pain, and so we often have to guess what is wrong. If you ask him how he is feeling, he’ll say, “Good.” But that’s his default answer for everything. If you then ask him if anything hurts, he’ll say, “Yes.” So I take him to the doctor often, to get him checked. At this point, the doctor knows him very well and so the two of us puzzle these things out together.
I have a very different relationship with Max, who is as communicative as any normal 21-year-old young man in college (that is, not much). So I worry about him, too.
This year his apartment in Brooklyn is more squalid than usual because he is off-campus, not even close to the illusory protection of the school grounds of New York University. I had to learn just how bad it was from Facebook. Max posted something like this: “Ugh, the toilet doesn’t work and we have bugs. Only dead ones so far.” He was “pretty certain” they were not bedbugs.
Panicking, I told him to tell his landlord but I knew that would likely be an unsatisfying experience in such a slum-like apartment. I know he is a young man and has to learn to do these things himself – but bedbugs? That takes a mother’s muscle, not a mellow young man’s. I asked him to send me a picture of the bugs and I would show it to a pest specialist. He emailed it, saying, “pictures of bugs, sorry about the white balance.” Oy, film students!
To my surprise and relief, Max actually did sort this out. The landlord came and fixed the toilet. He sprayed for bugs. Yes, the corpses were still there when went down there to help him with additional furniture. Yes, he’s since seen a few more and they were very much alive. But they turned out to be cockroaches, not bedbugs. I never thought I would find myself saying, “Thank G-d, cockroaches!” But the experience of your sons leaving home gives you a new perspective on such things. For now – just for now – I feel I can relax about Max. Maybe he will be okay – as long as he locks those bars on his windows.
And Nat, well, it is a bit more complicated, of course, because he can’t call a landlord or complain. It is heartbreaking and scary. I solve this by bringing him to his doctor for extra visits, just to be sure, which is not easy because he works and lives 20 minutes away. The doctor is perfect for Nat and me. She takes each visit very seriously. She rejoices at his progress. She really “gets” Nat. She worries enough that I trust her, but knows enough science that she doesn’t go overboard. She also happens to be a Jewish mother as well, and perhaps that gives us an extra connection.
I had to bring him in the other day because I’ve been worried about the recent weight loss, and his overall diet and health. After a battery of questions about his belly/tummy/stomach that he may or may not have answered accurately with that same “yes,” the doctor turned to Nat once again and asked if his head hurt. Nat bellowed, “Nooooo” – so firmly that we all just sat there stunned for a moment. Then the it was as if the sun came out, and we burst out laughing. I wanted to jump up and hug him, but of course, he is a 23-year-old man, so I didn’t. Instead I gave him a dignified thumbs up. But, wow. That time he really told us. Loudly.
So sometimes, I can kinda, sorta let go. And I know at some point I will have to let go. Autumn comes and then – winter. But not quite yet.
In the end, after a thorough exam and later on, blood tests, the doctor decided that Nat was OK. She felt reasonably certain that a focused diet would help. Her final advice was in that most sage of tongues, Yiddish: “Eine bissele, mein kindelah!”(“Eat a little bit, my child. Just one piece.”)
One piece at a time. More broadly, one step at a time. I realized a little later that this could apply to Max, as well. One step at a time. I guess that’s all any of us can do – sons and their worried mothers.
1) If you must jaywalk, do not read your phone and go really slowly at the same time.
2) If someone clearly lets you in ahead of them, wave or smile at them.
3) If you did something wrong while driving and someone honks at you, don’t honk back at them.
4) Do not listen to your music so loudly that I can feel the beat and hear the lyrics — even though you have on earbuds.
5) If I hold the door for you, thank me.
6) Let people out before you go in. Elevator, restaurant, store.
7) If you’re riding a bike, don’t antagonize drivers by riding two abreast or taking the entire lane when there is a bike lane to use
8) When passing a biker in your car, don’t pass them too closely.
9) It’s okay to give a homeless person money. It doesn’t matter what they may or may not do with it.
10) Don’t count up every item on your restaurant check. You’ll enjoy your meal better the quicker you take care of paying.
11) Don’t let your child play or run around right in the way of waiters.
12) Don’t have a loud conversation with a friend on a quiet subway car.
13) Give up your seat for an elderly person, a pregnant person, an overburdened person.
I found myself almost going back in time today as I thought about Nat and reading. I want him to read more. I have wanted that for ages. Reading was in his IEP year after year. He knows how to read, has known since he was about 7 or 8. He has progressed to a first- or second-grade level, and there he has stayed. I don’t care, I don’t mind, who cares what grade he’s at as long as he’s reading. But I don’t think he is. I do hear from the house staff that Nat does choose to read when he has down time. I don’t really see that here, but I have to admit that we don’t often think of offering it to Nat as something to do. Usually, if I do see him looking at something on the living room coffee table, it is a flyer from his social group. He doesn’t seem all that interested in his childhood books — or the childhood videos, for that matter. When we do ask to read with him, he can read, probably at a first or second grade level. I believe he understands the content when written on that level as well.
When Nat was a baby, the first shared activity we had with him was reading. That day, that beautiful, heartstopping day, when he reached out for Corduroy’s Day: A Counting Book, took it from my hands, closed it, and handed it back to me, saying “uh uh uh,” and I knew that some things were going to be okay with this unusual baby of mine. There was something we did like to do together; there was something he could make me understand.
Back then Nat showed his joy in small slips of smiles here and there, unexpectedly wide bright flashes of light from his face. That’s what he does now. But I want more. I want to see him engaged like he used to be, in something that he likes, but that will also stretch him, lead him out of his own mind. As fascinating as he finds his own world, I think it would be good for him to engage more in the wider one out here. Aside from interacting directly with people, or indirectly on Facebook or email, there is one very clear way that Nat could enjoy engaging with the world: through books.
But as I once said prior to Thanksgiving of 1992, “There are no good books out there,” for someone like Nat. Back then I meant someone who needed things explained, step-by-step, beginning, middle, and end. He needed Thanksgiving to be explained, not in terms of Native Americans and gratitude, but in terms of what the heck happens to him on Thanksgiving Day. I created the “Nat Books,” or “Crisis Stories,” which did just that. These were a kind of social story, but I feel I invented them (mine, I mean), because I did this before Nat was even diagnosed, let alone before I’d even heard of Carol Gray’s ingenious invention. Necessity is the mother of invention? Necessity is why this mother invents.
This morning I was Googling books for adults that were written on a first-grade level. My mother is a librarian and she told me such books exist. I could only find one company producing them, and frankly they looked like cheesy boring crap. And suddenly I found myself saying, “Why can’t there be books about adult things, but that Nat could read and comprehend? Why must he be stuck in the world of princesses and pirates? Talking mice, flying carpets? He’s a grown man. He must wonder about other things. Why aren’t there books about things that Nat cares about, like — like — like — ?” Like what? What does Nat like?
Nat likes calendars, his social group outings, Cape Cod, and his brothers. He types “Max Ben” whenever you ask what he wants to talk about. He asks to talk about the calendar when he wants to talk about anything. He grabs the social group flyers from the coffee table. He loves going to Cape Cod.
So today I started writing a simple chapter book, and the first chapter is Max and Nat move out. Ned is going to find the right on-demand publishing software — probably Lulu — and together we are going to make cheap, bound, real books for Nat that tell him what he wants to know — and perhaps even more.