Susan's Blog

Wednesday, October 30, 2013

Housing Workshop!!

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 ccampboyle@comcast.net.

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.

Tuesday, October 29, 2013

By the way

Go Sox!

Thursday, October 24, 2013

Autism Parents: Get Thee to Concord Mass 10/24/13

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: susan@susansenator.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.

Sunday, October 20, 2013

Help families finance adult autism housing

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  ccampboyle@comcast.net on your comments, so she can have a running total of who has commented.

Thanks very much,

Cathy Boyle
Autism Housing Pathways

And me, Susan Senator

Renaissance Rebirth

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.

Monday, October 14, 2013

The waiting is the hardest part

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?

Wednesday, October 9, 2013

Autism Mommy Swami Q & A: Age-Appropriate?

Dear Swami,

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

 

Dear 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!

Love,

Swami

 

Sunday, October 6, 2013

The Radical Right is Wrong

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.

 

Wednesday, October 2, 2013

My Latest WBUR/NPR “Cognoscenti” Column

I write for our NPR affiliate station, WBUR, and last week 9/25, this piece was published.

Max & Nat and Separation

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.