Number One: People grow and develop. Education works. Sticking by someone and believing in him works.
Number Two: Disabled does not mean “can’t.” It means “I possibly can, with the right supports. Give me a chance.”
I have a lot to be grateful for. 1) Nat’s tremendous growth and ability to learn; 2) Nat’s wonderful independent living skills education at the May Institute; 3) Nat’s amazing loving caregiver who lives with him in their small apartment in Boston nearby; 4) Nat’s tremendous growth and ability to learn. Lather, rinse, repeat.
Especially given the concern and worry I devoted towards Nat’s self care skills. I despaired that he’d ever learn how to even make his own breakfast, as you can read here in this 2004 New York Times article I wrote for their Education Life section.
Read the piece, and then play this video, taken this morning by his caregiver John. John merely said to Nat, “What do you want for breakfast?” while sitting on the couch, not even in the kitchen. And then Nat went ahead, as you can see. NO PROMPTS.
And now say to yourself, “With autism, never say ‘never.’ With any human being, never say ‘never.’” If any professional every tells you “He will never be able to …” you might consider walking right out of that office, and directing them to this blog post and the video below:
This morning while driving I realized I was behind a van, one of those tall white ones, that transport either school kids with disabilities, or adults in day programs. The rearmost seat showed a hatted head, with gray hair sticking out underneath so I knew it was an adult van. Then I thought of Nat, of course. I remembered immediately that he would be at work this morning, in the supermarket parking lot gathering shopping carts. Small stab of pain in my chest, just the tiniest drop of sadness gathering there. Not because he is a person who has that kind of allegedly menial job. But because I wondered if he was cold. And that I had forgotten about him for the morning, until this moment.
The two thoughts merged while I waited for the left turn signal. The van in front of me became a blur as I remembered the actions I’d taken the other day, to protect Nat from being cold. I had heard from the day program that he was coming in without hat and gloves, and was wearing low socks. Right away I had talked to his caregiver John, whom I love, and who loves Nat dearly, and we’d figured out together what to do. John had then spoken to the day program, agreed about the socks, and then the day program director — also a good guy — pointed out in turn that he’d discovered Nat’s missing hat and gloves in someone else’s locker there. Problem solved.
It’s not often that easy. I often have trouble figuring out what Nat’s doing when during his week and it is no one’s fault. It’s just that he is involved with many people during his days. There are many parts to the Nat machine and keeping them all well-oiled and operative is still my job — even though I am no mechanic. I’m much better at the softer skills, the things I can see and touch, particularly when he is home with us on the weekends. I can look around the kitchen and see he has not yet eaten. Then the problem is to get him to initiate wanting to eat. That is a piece that flies away from me whenever I come near it, like a startled bird. You can never really catch those birds. I don’t know if I will ever get Nat to consistently ask for what he needs, let alone just take it. I am the proponent of “With autism, never say never.” And I’m not saying “never,” but I am seeing initiation for Nat with a big sigh blocking it. And I’m just as much an obstacle, because I love mothering in certain ways, and jumping to make a fun meal for him is one of my favorites. So the Goals and I seem to be at cross purposes.
Sometimes I feel that Nat and his adulthood, and I are at cross purposes, actually. I’m supposed to let him go, and be in the world independently, with the help of others and only sometimes me. But how in the world does one pace this type of thing? And yet it is happening, because I had indeed forgotten about him until I saw the van.
All these thoughts were tumbling through as my vision blurred and the van was a shadow. I thought, I am at such a loss about this letting go thing, because I am torn between wanting him to be a successful adult and with wanting him to feel like he still has the love and protection of his mother. Many of you are shaking your heads, smiling wryly about how I hover, or how Nat is so grown up and I just can’t see it. But do you realize that it hurts — hurts — to think that he might indeed want me more in his life and then finds that I’m not!
So there was that little pinch in my heart, that’s what it was. And then it kind of popped, like a blister, and became something else. For right there, next to those fast moving scurrying ant thoughts along came another memory, creamy and slow, like lotion in a bottle, almost run out: I realized I was at the very corner I’d been 24 years ago, where I was supposed to meet Ned and Nat (after my appointment nearby). And sure enough, Nat had materialized there, swaying atop Ned’s shoulders. Wobbily joyous. Then his face had lit up even more because he’d recognized me. There was that wide goofy baby smile. He was so glad to see me — but he had been happy without me, too.
This information below comes directly from the Arc of the United States. The new Congress is now stealthily pushing to reduce Social Security Disability Insurance benefits by potentially 20%!!! Taking aim at the most vulnerable, most under employed sector of the US population. Is that fair? Here is the information from the Arc:
The Arc Action Alert: SSDI Under Attack Today: Tell Your Member of Congress to Vote No on House Rules
On the first day of the new Congress, proponents of cutting Social Security have hidden major disability program changes in an unrelated, routine package that sets the rules for the U.S. House of Representatives. These changes to the Social Security disability program have not been considered in hearings or open to input from constituents.
As Members of Congress are organizing for the new session, the rules governing debate and procedure in the House must be approved. Tucked in this package is a provision that takes off the table a routine shift in Social Security revenues needed to prevent a 20% cut in Social Security Disability Insurance (SSDI) benefits in 2016.
This vote is happening this evening – call your Member of Congress now to support SSDI.
In 2016 Social Security’s disability fund will face a long-expected shortfall due to demographic trends such as the nation’s aging population. Since Social Security was enacted, Congress has “reallocated” payroll tax revenues between the retirement and disability trust funds – about equally in both directions – some 11 times, on a bipartisan basis, to account for such demographic shifts.
The House rules package would hold SSDI hostage by putting up roadblocks to another routine, common-sense shift in Social Security revenues. Unless Congress acts to temporarily increase dollars going into the disability fund, in 2016 SSDI beneficiaries will face a 20% benefit cut.
Instead of having a meaningful debate about the future of Social Security and SSDI, House leadership is seeking to make major policy changes that will affect millions of people without hearings or input from their constituents, essentially in the dead of the night.
Call your Member of the House of Representatives today and ask him/her to protect SSDI and vote NO on the House rules.
The House rules package contains a harmful provision that could force cuts to Social Security, including Social Security Disability Insurance.
People with disabilities rely on this program for basic needs – any cuts will have a devastating effect on our/their lives.
This major policy is being done without hearings or input from your constituents, essentially in the dead of the night.
Vote NO on the House rules package when it comes up for a vote today.
Nat’s going home now. It’s always a blue-tinged moment for me when he leaves. I never fail to wonder if he is doing what he really wants in life. Is Self-Determination an attainable goal for someone like him? When Autistic Self-Advocacy Network (ASAN) says something like, “Nothing About Us Without Us!” can that include Nat? What if I am the person who speaks up for him the most? Am I then to be included in that “us?” I hope so.
I know I can speak for caregivers — the ones who really, truly care for and about their autistic loved ones, not the ones who phone it in or worse — when I say that we deserve a welcome at that table. And I do feel welcomed by the autistic self-advocates, and I think that’s how it should be. I wish their language could be amended to reflect the fact that people who have the challenges Nat faces really depend on others to speak for them. Some things about him have to happen without him. I wish it were not so, because I want him to be the author of his life. But he always has a ghostwriter, mostly me.
I don’t know how Nat feels about this reality. Is he used to not doing a lot of things for himself, by himself? Does this bother him? Or is he accepting of it? Maybe both. I guess everyone’s different in how much they accept of their inabilities. Anyway, I try so hard to talk to him, to include him in our conversations, but he still is talked about, talked over. Others are far worse than me in this regard. I’ve seen so many well-intentioned people ask me what he’d like to drink. To them, I am that intertwined with Nat’s presence. They think I know. This Christmas it was very natural for me to answer, “I don’t know, you’d have to ask him,” completely without anger. It came out naturally; I knew Nat would answer. How does he feel about these kinds of situations? I hope he’s proud that I just steer people to him, more than pissed off that I have to do that.
I notice how the norm for most people in our family is to ignore Nat. His brothers do not even think to include him in the simplest of activities, like looking at stuff on their laptops together. I wish it were different and yet this is how it has to be. Their lives, their decisions have to be their own. I know that if I were to ask them to include Nat they would, but would that be good for them? As it is they have had their lives changed greatly by having Nat with them — in good and bad ways. I cannot decide things for them without them. It feels like it is crossing a line to do that. Don Meyer, Sibling Expert, told me in an interview that you have to let the siblings have their own existences, let them do what they need, their lives are hard enough. That there are so many questions in their minds, fears for the future both named and unnamed, that they wrestle with in regard to Nat, that for me to then step into their consciousness and give them tasks, basically give them the message that the thing they are doing is not nice — would be an invasion of an important boundary. It’s not that they’re being mean. It’s that they are being themselves. I never let them be mean. But this is a gray area that now that they are 22 and 16 they must navigate themselves. They have to come to it themselves and the more they are allowed to be who they are, the more likely they are to come to Nat in the future and open their arms to him.
I try hard to let the three of them determine for themselves who they are and what they want to do with their lives. But they do need my guidance. They cannot be allowed to be mean. Is not including Nat mean, or is it merely what they do right now?
As for Nat, not being able to speak for himself much is one of Nat’s greatest challenges. He is frequently passive or unable to determine what he wants, and so it is a complete conundrum to help him in this regard. Helping him not be passive — the only way to do that is to sabotage things, make him so frustrated that he has to ask for them. It feels cruel and in the end, it doesn’t really help. It’s an ABA-ish solution, one where you may end up helping but the means of doing so are questionable.
You can’t force someone to move past their disability. You have to accept their limitations as much as they need to. You have to give help, and they have to accept it, but you also have to not help sometimes. Sometimes you also have to step back and let things go on in an unsatisfying, imperfect way. I don’t like that. And so, letting him go home Sunday evenings in this murky set of circumstances feels bad to me, like it does when people basically ignore Nat. In the end I have to hope that what we are doing or not doing for Nat is what he would want. Or at least what is okay with him.
Warm sunny Sunday
Come sit, my darling
You are yellow and blue but not afraid, not sad
Together we dent the couch, sinking in
You’re so close, I breathe you. My heart’s a balloon, filling, stretching.
Pick who you want to talk to
I ask you to give us some words, if you can. Are they light inside you today, effervescing at the top of your throat?
“Yes,” soft and fragile, floats like a bubble.
Finger crooked over the letters, darting: where are they? Don’t lose the word, quick. I’m breathless waiting for the connection.
Fingertip to key,
Words to me.
Kaleb Gaudinier, Missing from Clinical Support Options Respite in Florence, Massachusetts. He weighs only 110-115 lbs. and is in a fragile state of starvation and dehydration. He was last seen on 11/12/2014. He is 5’10” and is a white male. He was last seen wearing a black hoodie sweatshirt and black sweatpants. He is autistic and may shy away from people.
“We should all have equal rights. We need a place to live, too. Not just typical people…any number of people that you wish.” A developmentally disabled client of Jewish Family and Children’s Services, November 6, 2014.
“I love my house. Don’t shut it down.” Another young man with a developmental disability, I did not hear where he was from.
Integration, and Community First Vs. Self-Determination is the issue at hand. Does one-size ever fit all?
CMS, Centers for Medicare and Medicaid Services, has come out with new rules related to home and community- based settings: “Full access to community living, integrated settings.” Department of Developmental Services in Massachusetts is proposing to go further, beyond the new CMS rules and restrictions on community residences and DayHab. They are having two hearings, one was tonight, November 6, the other is November 12. (Send your email testimonies to HCBSWaivers@state.ma.us for comments by November 15)
Tonight there was a gathering of perhaps 150 people at Mass Bay Community College in Wellesley, Massachusetts for the HCBS Medicaid/DDS public hearing. Many of these giving testimony were family members, residential home staff, and self-advocates. Many great points were raised, for example (please forgive my paraphrasing, I tried my best to follow their exact words). I am not doing justice to the passion and eloquence and variety of great points raised, I’ll just do my best to pull out points that jumped out at me:
First there was Steven, from Stoughton, stepfather to M, 44, developmentally delayed, lived at New England Village since 1993. There are over 150 ppl there. Full time nursing staff. Life skills, pool, wellness center, arts&crafts, helps other residents, takes cooking lessons. Friendships develop betw residents at diff houses and outside of NE Village. “Working is what she does best.” His wife is always in the loop with regard to every aspect of Michele’s care. Michele has learned about the cycles of life, even death. (sat with resident who had Altzheimer’s in his last hours).
John of Berkshire Hills Music Academy said, “A shame to judge a community by just one standard.” “Community should never be defined as a fixed location.” “Don’t assume that just because it is a community setting doesn’t mean it is unsafe.” Used example of those many in Assisted Living. “What if we take that choice from them?”
Paul, brother of M, who is as he put it, “severely retarded… Couldn’t take a bus anyplace. We had an objective: to find a happy healthy place for her to grow.” Has been in New England Village for 42 years. She has grown: library card, white water rafting, kayaking, shopping with others…It is a village, not a home, not an institution. You must look at each person individually, you come out and look at these establishments, see how the people react.
Barry: Chair of Board, NE Village. Created as an answer to the de-institutionalization. “Speak to understand what the person wants and help them achieve their goals.”
Kathleen, A’s sister, also NE Village. A is very involved…picked out her own room colors, goes to the animal shelter.” Later, A spoke, too.
Another, a mom of a 22 year old at an Amigo group home. “He receives prompts and reinforcers to help him through his day which could be defined as coercion inadvertently.” “Taking away the ability to use restraints judiciously could result in dire consequences,” And “What will be the fallout in terms of disability sensitivity when videos from community are released into the media?” Also, “Forcing Timmy into the community for 30 hours would cause him serious distress.”
M — a client who spoke for herself. She lives in “The Yellow House” since 2010 w 6 roommates. “See how awesome our home is,” she said proudly.
A sister, guardian of a 63 yo. Lives in home run by Charles River Arc, one of three houses on a cul-de-sace. Less than 2 miles from Needham Center. No evidence that these three homes are contrary to the goals of HCBS. “There is no way that my sister would choose to relocate.”
Stephanie B asked: “Are we responding to the integration mandate or the person centered choices first?” Person-centered Planning will lead to integration!!”
J, who lives in The Yellow House: “I want to continue living with my six friends. Thank you.”
Another, M, lives with eight housemates. “That is a better number to live with than just being with five…We plan meals together, we enjoy talking to each other. To me living in a Shared Living apartment helps me to grow up and live away from my parents.”
Irene, I’s mom. Isaac is autistic, 26, served by Amigo. About DayHab: in school, they trained Isaac in voc tasks. He needed a one-to-one. He never got any training doing these things in the community. The school deemed him not ready. At 22, no money for a one-to-one job coach for him. Too difficult to fade out the job coach. So, what good is it to have a person do a job when you need another person right next to that person to make sure the job gets done? So Isaac is in DayHab, scheduled day. He has more opportunity than when he was in a program that exercised voc skills !
One woman with a disability spoke of the need to push for integration, to give people chances to grow. “Community First,” was what she said — so she is of a different mind from the others who spoke before.
Gary Blumenthal, ADDP, told DDS, “We’re all here because you all have done such a good job!” We ask that the Dept of MassHealth not Pre-judge CMS. CMS will hold you to your word. We ask that you work with the providers that will be part of the Joint Committee of DDS and ADDP to determine in a manner that is outcomes-based that looks at the total experience of the individual with the disability and not just on their location. We ask that we have a chance to see what amendments you take before it goes to CMS.
Jude, an autism mom, and J, her son: “J is not an adult but he will be soon.” Crying, she thanked a lot of Jack’s friends for coming. “Important that our loved ones with autism be seen and heard.” Jude mentioned that she also works for Autism Speaks when CMS looked at these rules, Autism Speaks “expressed concerns about rules that restrict where people live.”
A, who is from Sage Crossing. Her son told her he always wanted to live on a farm. He wants to work the land. Under the proposed options, he won’t have that possibility.
Another couple: “What is the number five? …Why should the folks that live in the over-five-people homes, their family be limited to just three or four others?”
Cheryl C, an autism mom: “The broader community is not inviting my son to come to their house. No one has the right to decide that people with disabilities aren’t capable of being friends and supportive of each other. And that they must be in a public place to be fulfilled. I’m sorry, but that’s crap.”
Cathy B, an autism mom: “Overwhelming sensory issues limit the time some individuals with autism can spend in the community.”
My feeling while listening was: Forget the fact that there are so many family members and staff testifying about the need for self-determination, not tenant number-based or location-based restrictions for happy, healthy residences for the developmentally disabled. BUT the fact that all of these self-advocates – intellectually disabled people could come here and testify themselves — doesn’t that say anything about how things have changed since the closing of the institutions? There is so much more independence, people working, living worthwhile lives. Why is the DDS messing with success?
If you live in Massachusetts near Wellesley, or Westfield, PLEASE consider attending this hearing! Maybe work it out so that your autistic adult family member/loved one attends with you. DDS et al. need to have AUTISM IN THEIR FACE. This may help them get it. Wear RED!!!
If you have considered creating or settling your autistic loved one on a farm, for example, you can forget about that if these rules go through.
BULLETIN From Cathy Boyle, of Autism Housing Pathways:
This Thursday 11/5/14, at 6 p.m. there will be a public hearing at MassBay Community College, 50 Oakland Street, Wellesley, Massachusetts.
Westfield State University campus, 577 Western Avenue, Westfield, on November 12, 2014 at 10:30 a.m.
MassHealth will be hearing public comment on its draft transition plan on Medicaid’s new rule on home and community based settings. While this sounds complex and technical, the bottom line is that the final plan will determine where you can use Medicaid funds to pay for your adult family member’s services. Even if your child is not yet an adult, these changes are likely to be in effect for a generation. As of right now the draft plan means people with DDS funding will NOT be able to be used in:
SELF-CONTAINED, QUIET SETTINGS REMOVED FROM THE COMMUNITY (* Settings that have limited, if any, interaction with the broader community);
* Settings that use or authorize restrictions that are used in institutional settings;
* FARMSTEADS or disability-specific farm community;
* GATED or SECURED communities for people with disabilities;
* Settings that are part of or ADJACENT TO A RESIDENTIAL SCHOOL;
* Multiple settings co-located and operationally-related that congregate a large number of people with disabilities for significant shared programming and staff;
* Multiple settings on a single site or in close proximity (see directly above)
“DDS may license or fund new homes in the community that are duplexes, “triple-deckers”, or free standing homes that are either side by side or adjacent or on bordering lots only upon the review and approval of the regional director, the assistant commissioner for field operations and the assistant commissioner for quality management. The capacity in these settings may not exceed four (4) individuals on each side of a duplex, in each unit of a triple decker or in each free standing home located on adjacent lots.”
The new Medicaid rule also applies to day services, and may result in severely restricting the use of center-based day programming. Individuals who cannot participate in the community 30 hours a week, either in competitive employment or recreational activities, may find themselves at home much of the day. While the current draft transition plan refers only to residential services, we have been told testimony regarding day services is also appropriate at the hearing.
If you are concerned by any of the above please come to the hearing. We ask that you wear red.
To learn more, please go to www.visionsofcommunity.org
I was in the lobby when those first notes from “Circle of Life” broke through at the autism-friendly Autism Speaks-supported Lion King at the Boston Opera House. I was standing just outside the doors, as Main Floor Navigator, in the lobby with the actors about to walk through the doors onstage. They were the animals coming to see the new baby Lion. I stepped backwards to give them more room. I felt like a child allowed to be at the adult party. All around me the actors had their costumes half-on, with the masks on the floor, at their feet. Huge hairy water buffalo heads rose from the ground like monoliths; a ghostly translucent giant rhinoceros, made of blue grey papery ribcage and thick tree-trunk legs materialized off to my left. They all tensed at that first call; then there was a velvety hush in the lobby, and they answered as one, a capello, angel-like,,getting into their roles, summoning all that clear, half-whispered awe in those syllables. The doors opened, and they strode into the theater, through the audience. I felt chills, and tears sprang to my eyes. A profound beginning, but also, so many memories swirling around me, carrying me away on their sweet tide. My first two babies,Natty, 3 1/2, and 18 month old Maxie, sitting in the backseat of our little red Honda Civic hatchback at the Wellfleet Drive-In on Cape Cod. It was Max’s first movie.
The animals all sang to their new tiny king to pay homage, a blast of brilliant hue, animal shapes, a cacophony — really a symphony of cries, so loud, so moving — filled our ears. Then, as if a plug is pulled from a bathtub, the sound is sucked away and it’s all dark.
“What dis movie?” Little Max asked me, thinking that the opening scene was the entire film — it was that huge to him. Oh Maxie! You were so little you didn’t even know that. Even then you were fascinated with film. Who knew you’d grow up to graduate from NYU’s Tisch School of the arts, a camera artist, a budding cinematographer?
But I’m getting behind — and ahead of myself. Yesterday Max wasn’t there, but Nat was, now almost 25. Wearing the same oversized yellow lion face tee shirt as Ned and all the other adult volunteers. We were all there to navigate, assist, calm, and bask in this beautiful Autistic Assembly, this army of parents and caregivers, for once not fighting bureaucracy, school systems, or sad wistful taunting dreams. They were there, at peace, accepted and loved. Some guys didn’t make it through the next scene. Ned told me parents would come up to him, he was an usher, and say, “We just have to — ” And he’d say, “It’s okay,” and point the way to the calming room, or the exit, or the bathroom. One friend came out with her grown son (who had her very same face) (I’d never met him, I got to meet so many of my Autism friends’ kids). This friend said to me, “I think we’re going to declare victory…” Ned turned to me and said, “Was she thinking of my words?” So long ago, Ned had come up with our family mantra: “Declare victory, then get the hell out.” Meaning, we, the family, would set the terms of success. We would decide how much of this moment in time we could get through and then we could leave feeling triumphant.
Yesterday we were all triumphant. The Opera Workers seemed delighted. The actors hummed with their energy and ours. The “regular” world had met us and welcomed us. We were surrounded, and embraced, by a Circle of Friends.
Okay, and here is my latest Washington Post Oped, about my troubles with Facebook. It’s all true, bro. Yeah, it’s already up on FB, too.
Family-friendly Broadway is nothing new, and its success is no surprise. But autism-friendly Broadway is a stroke of marketing genius. Billed as “judgment-free, ” these shows generally offer a stimuli-sensitive environment: low light and sound, quiet space, autism specialists available for extra support.
There have been pockets of such performances offered around the country in the last six years but Theater Development Fund’s (TDF) Autism Theatre Initiative has taken the concept to a new level. TDF has been funding overwhelmingly popular performances – most recently the Lion King — at venues like Los Angeles’ Pantages Theater and the Autism Speaks-Boston Opera House venture on October 11. The Madison Square Garden Lion King on September 28 apparently sold out in just days.
I am of course, a veteran autism mom – Nat is almost 25 – and this kind of trend is, well, music to my ears. When Nat was a child, he didn’t even get to go to school in his hometown, let alone participate in any normal after school fun. For Nat, rather than taking an art class like his brothers did, or a group music lesson, everything Nat did was therapeutic — music therapy, art therapy. Or I had to pay big bucks for a one-to-one, which I only did for Sunday School because back then that synagogue had no special needs curriculum. I did organize an autism spectrum soccer team, but the coaches gravitated towards the less autistic teammates and left Nat in the dust. One year he was taught to tolerate wearing a costume so that he could be in the class play. Everyone could say he was being included, but was he? It just seemed so — fake.
Still, I never gave up looking for a welcoming place where Nat could really participate, like any other kid. And every now and then we did manage a family outing to a movie, with no behaviors, no outbursts, and with a lot of positive reinforcement. In the safe accepting dark of the theater we’d dole out a piece of popcorn to him every few minutes that he was quiet. Back then our goal was usually getting through things – enjoyment took a back seat. “Declare victory then get the hell out,” my husband would say.
I will readily admit that I had serious problems with being oversensitive to anyone looking at Nat cross-eyed. I have intolerance-for-Nat radar that may be highly tuned to a faulty. So I was not much help when it came to joining with organizations that offered kid experiences. Still I yearned for a time when we didn’t have to explain Nat and watch his every move and try to intercept his autism so that everyone else could enjoy their lives. I faulted society for being intolerant and clueless. But most of the time, I faulted myself for being unable to give him more of a normal life.
Wow, have things changed. Not to sound cynical, but autism is big business. And yes, many more people really care about our guys and want to help them enjoy our world. So I am cheering for the autism-friendly Lion King performances — not only because I love the show, but because of the attention and respect being given to kids like Nat. Yes, it is a separate performance, but it is the real deal. And I have made my peace with the fact that with autism, sometimes inclusion simply means having the same experience as other people. Sure, I wish that every performance in every theater could be autism-friendly. Yes, there is still a stony part of me that is resentful of the generally autism-unfriendly world. But, hey, one step at a time. You know – Hakuna Matata.
This article is from the Disability Scoop, by Michelle Diament. If you are a person with a disability and you have Medicaid benefits, the bipartisan ABLE Act would allow you to save up to $14,000 a year, and up to $100,000 total, rather than the current $2000 total — and you would not lose your Medicaid benefit. You could save for a home, education, transportation…
I decided to be the Stealth Mommer today. I was so anxious as I drove to Nat’s workplace. But I told myself there was no need to worry, that I would not let him see me. He would not detect a blip in the Shaw’s parking lot forcefield and freak out. And why should he freak out that his mom was shopping there? Well, because it is Nat and me. We are connected by an invisible umbilical cord. That is not meant to infantilize him. It is a statement of fact, that our connection is deep and eternal. I’ve mentioned my plans to haunt him, yes? I do not plan to lie passively in some grave somewhere while he goes on trying to figure out this damned complicated world. Nor will I be a Mombie, chewing up his life. I plan to be a wisp of a presence in his soul, a memory, comforting and guiding him.
Okay, well, I don’t believe in afterlife, so that probably won’t happen. It sucks that we have to die and leave our kids to grieve and muddle through. Sucks doesn’t even begin to describe it, actually, but I don’t feel like dwelling in my saddest place today. Because I saw Nat at work.
Anyway… I planned to observe covertly. But soon after going into the store I almost bumped right into him. He was in profile, tall and sure in his navy down jacket (Yay! Warmly dressed!). He did not notice me, and went safely past me with his coworker and coach, pushing carts, smiling, talking to himself. So happy they don’t bug him about stimming. I kept watching him from afar. He went from carts to stacking the baskets. His coach was right there with him, which surprised me — I thought they were fading back a bit. But I leave that decision to them.
I then ventured closer and closer. I asked a Shaw’s worker if she knew him and she said, “Nate? Your Nate’s mom? Oh, he’s great!” I wanted to hug her. But I smiled and thanked her and left her with her table of sample cake slices. Nat had moved around to the other entrance.
I must confess that I gave in to my hovering mothering tendencies and finally let Nat see me. I stood still, 15 feet away, and removed my sunglasses. Right away he said, “Hi.” but just kept walking. I sheepishly introduced myself to the job coach. We shook hands, and she was smiling so much. She also told me how “He’s so great.”
I worried that Nat would be knocked off balance because I was there. So I said casually, “Nat, I’m shopping because I needed some food for the weekend!”
“I got you brownies!”
“I’ll see you soon, tonight, for supper!”
I went back to my car and drove past them again, an odd trio: tall blond Nat, short round coworker, tall thin smiling coach.
I sighed with happiness over my son. This is called “nachas” in Yiddish (pronounced “nakhahs”). Nachas is a perfect way to end one’s week, seeing a so-called “disabled” young man who is a treasured employee and fellow great guy to them. Plus now I have brownies.
Today Nat wanted to do some Facebooking. The way we do that is I have him look at the column of all the people who are logged on at the moment — the green dots show him — and then he chooses whom to talk to. He initiates the conversation with “hi.” After the person responds, I help him by reading their response and then repeating it to him. So when they say, “Hi Nat, what are you doing today?” I then say, “Nat, she wants to know what are you doing today. So tell her, what are you doing?” And whatever he says, I say, “Okay, so tell her that. Type that.” And then I sound out his answer for him, a sound at a time. So if he answered, “Sitting here.” I say, “S..” and I wait. I say again, “S…” He then says, “S” and I say, “Okay, type that!” If he does not say “S” then I go back to, “Nat, you said, ‘Sitting here.’ Type that.” And begin again.
Today he was very logy. And yet he really really wanted to do Facebook. He just had a hard time getting his info from his brain to his mouth and then to his typing finger. I had to repeat back his letters and sound things out but I never tell him what to say. Only if he says something that is completely default or echolalic, like “hi” too many times. Then I say, “Nat, you already said hi to her. Now say something else. You can tell her what you did yesterday. You can tell her what you want to eat.” Then he will answer something, like, “You went on a walk.” Or “Cereal.” So I’ll just say, “Okay! Type that!”
I always ask him the other person’s question and take whatever he says, no matter what it is, and help him shape it into a response. I coach him a sound at a time how to spell and type it. He does invented spelling, not accurate spelling. I don’t care. These are his direct thoughts.
This morning he chose his Aunt Laura to talk to. Here is the conversation, and I am beyond proud of him because he really really wanted to hang in there and talk to her.
LAURA: Hi Nat!
L: Where are you?
N: where here
L: at your mom and dad’s?
N: alrtan st
L: What are you doing today?
N: stay at al alrian st
go to kalton streatn
L: Did you do anything special yesterday?
N: went on wlk
L: I bet you got a treat too!
happy barfly jon love nat
L: Thank you so much Nat, I will tell John. Yesterday Kim and I had cupcakes for a treat!
N: hi snaman tost cranch
L: Yum, I love that cereal, but my favorite are Lucky Charms.
N: lake charms
L: Yes. do you like them?
Nat comes home every weekend. He is quiet. Sometimes he’s “activated” as his psychopharmacologist says — I hate that. It is such an inhumane way to describe someone. He’s just active. That’s it. Activated — what’s that? It’s referring to how maybe his meds make him? No, his meds are not like that. Besides, he is practically weaned off them.
Sometimes Nat is not active at all. Sometimes he just moves from one couch to another. I can’t get away from feeling like this is something that should not be. I remember years ago, a behavioral consultant who believed in that ABA bible, “Let Me Hear Your Voice,” told us we needed to scaffold with Nat, and to chain. Lots of construction, building — and also keeping down. The eternal struggle of ABA. We’re supposed to wrestle the autism to the ground, like Secret Service agents.
So I didn’t do that. Not really. People think I’m such a good mother but I did not do that. I got tired. Depressed. Lost hope. I didn’t consistently practice the ABA. He’s almost 25 for God’s sake and I’m still beating myself up for it. I did not believe it was the way.
Was I wrong? He is so quiet. If I had believed and converted, would I be hearing his voice more?
My heart just breaks for him. How is it okay, living such a quiet life?
I did the best I could, but my best was at times anemic, tired, mediocre. And he suffers for that. He is only as engaged as I make him be. That’s what a teacher told me when he was 5. It was all up to me in the end.
It’s always up to the parents. Even Post-Refrigerator. I see that now even with Nat as an adult. It’s up to us. From the start. The parents give birth. The parents try. The parents have to figure out that something’s wrong. The parents have to convince the doctor. The parents have to push the school system. The parents have to deal with their sadness, their incompetence. Everyone’s incompetence. And ignorance.
Then the evil of the adulthood system starts and there’s even less. Parents come to the rescue again. Parents will tell you what to do. Parents will listen. Parents write the blogs. Parents run the workshops. And write the books. I’m still writing mine, but just so you know. I’m no expert, either. I am just a mom, and not always a good one.
It’s just we humans and our beautiful, vulnerable children.
Here is an essay I wrote for our service provider’s newsletter, about Shared Living for Nat. Enjoy!
Valuable home-purchasing information for anyone in the country with a developmental disability looking for a possible low percentage down mortgage. I received this information from Autism Housing Pathways’ Cathy Boyle. It may now be possible for parents to buy with very little down through Fannie Mae if the property is for a son or daughter with a developmental disability!
How to get a 5% down mortgage from Fannie Mae if you are buying a property for a son or daughter with a developmental or physical disability:
The key language is in the Fannie Mae selling guide.
Note: If a property is used as a group home, and a natural-person individual occupies the property as a principal residence or as a second home, Fannie Mae’s terms and conditions for such occupancy status as provided will be applicable.
Also please note, this is different from the Fannie Mae HomeChoice program, in which the individual with a disability is the owner of the property, and the family member is a non-occupying co-borrower. In this case, the family owns the house. This *should* allow the person with a disability to use a Sec. 8 voucher, provided the local housing authority permits the family to be the landlord as a reasonable accommodation. This is not true of HomeChoice, which doesn’t permit the use of a Sec. 8 rental voucher.
This is a very exciting discovery.
As always, neither I, nor Cathy Boyle, nor Autism Housing Pathways, is engaged in providing financial or legal advice. Always double check everything with your own financial and legal advisers. A full legal disclaimer is available at the Autism Housing Pathways website.
Another great resource for Massachusetts autism adult housing: Housing 101 Workshops you can set up for your own organization. Autism Housing Pathways will bring their workshop to you!
Autism Housing Pathways* has now developed “Thinking about housing” to be “Housing 101″ for families. This free 2 hour presentation introduces families to the range of public funds available to pay for housing and supportive services (including for those without DDS supports). Some examples are given of how these can be combined with private funds to create housing. The presentation also introduces a checklist of things to do when your family member turns 18.
Their current schedule of presentations is:
Oct. 6, 2014 at 6:30 PM at Community Resources for People with Autism, 116 Pleasant St., Suite 366, Easthampton (RSVP to JanDoody@theassociationinc.org)
Oct. 7, 2014 at 6:30 PM at 7 Hills Family Services, 128 Main St., Sturbridge (RSVP by calling 7 Hills Family Services, 508-796-1952)
Nov. 5, 2014 at 6:30 PM at BAMSI, 155 Webster St., Unit D, Hanover (RSVP to Mary Ann Mills-Lassiter at 781-878-4074 ext. 11, or firstname.lastname@example.org)
Dec. 16, 2014 at 7:00 PM at Cary Memorial Library, 1874 Mass. Ave., Lexington (sponsored by Lexington SEPAC; RSVP to Barbara White, email@example.com)
Dec. 17, 2014 at 7:00 PM at Morse Institute Library, 14 East Central Street, lower level, Natick (sponsored by the Autism Alliance of Metro West; RSVP to firstname.lastname@example.org)
At least 5 more presentations will be added during the school year. If your organization wishes to host a presentation, please contact Cathy Boyle, email@example.com
*Autism Housing Pathways is a non-profit that my friend Cathy Boyle developed here in Massachusetts. AHP’s core values are as follow:
Autism Housing Pathways (AHP) is a family-driven, membership-based organization serving individuals and families in Massachusetts impacted by autism and other developmental disabilities. We have the following core goals:
- Building the capacity of families to find or create housing solutions for their family members with disabilities;
- Improve the professional development of direct support staff;
- Conduct research on the housing needs and resources of the Massachusetts autism community
- Building the capacity of the housing sector to meet the residential needs of individuals with autism