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“One more itch,
you son of a bitch
been a waste of my time
Now you’re half awake
you bend till you break
and make the same mistakes

Happier, by Guster

One day, I will live in a little log house on 30 acres of woods in Chatham, NY. There will be a stream, and a hill, and trees everywhere you look. I will befriend birds, squirrels, rabbits…all manner of wildlife. I’ll spend my days making trails, stacking rocks, and creating tiny homes for elves and faeries. I’ll have a big pool or pond just for Boo; we’ll dance to Guster and play in the leaves. Hell, I’ll grow gardens of veggies just to feed the deer; they’ll be the happiest critters in Columbia County.

Y’all can keep this damned divided country full of hate. Demonize the Other all you like. I’ll be on my own little parcel of peace, all done trying to be good enough, all done trying to make a difference. All done. Quiet. Calm. Still.

One can fantasize.

The good news is Jonah has been doing well. He’s got 3 upcoming events and I’m looking forward to attending them – a senior class trip, prom, and graduation. Briana is going to be at all 3, and she’s helping me coordinate some cool clothes Jonah will wear for the occasions. I’ll be sure to take lots of pics to share! I just saw Boo this past Sunday…it was a rainy day and I was worried I’d only get to be with him for a short while, so I brought some DVDs to coax him into hanging out a while after we ate lunch at the Visitor’s Center. As if through divine intervention, though, the rain stopped long enough for us to take our campus walk, hand in hand as usual, playlist on full volume. We adore our walks. Jonah truly loves his mama unconditionally, and I love him unconditionally as well. We don’t have to say anything to one another to know it. It’s a singular bond.

I interrupt this post to tell you I’m about to ramble, complain, and bitch, blah blah blah – so if you want to skip the rest, go right ahead. I promise the next post will have stories and photos of Boo.

Unconditional love. We throw that phrase around a lot, and too lightly, if you ask me. I have known a lot of unconditional love, but I have also known a different kind. My birth mother abandoned me at the hospital last minute, so I didn’t get any from her for sure. The parents who adopted me offered transactional, conditional love, once I had a mind of my own. So long as I asked how high every time they said jump, they were happy campers. If I never displayed opinions or thoughts in opposition to theirs, everything was fine. But when I broke these unwritten rules, they usually turned cold, insulting, and distant (my mother) or exploded in anger (my father). I was controlled quite effectively by both of them, and as a result I became cowed. I didn’t get a voice and I certainly was never allowed to be angry. These things are as true today as they were in 1980 when I was 10. Some of it is being raised Gen X. As a generation we were the ‘latchkey’ kids, collectively ignored, left to roam around the neighborhood, told to go play. But maybe, also, it’s true you teach people how to treat you. If so, I’ve taught both my mother and my father to bully me.

Don’t get me wrong. You’ve heard me accentuate the positive aspects of our interactions in this blog. I’ve tried to stay in a grateful place. And I know I’m blessed to have parents who love me, unconditionally or not. I never wanted for anything – food, clothes, toys, lessons in tennis, ballet, piano…trips to Disney World, the Olympics, the ocean, Broadway shows…an in-ground pool, a beautiful house, a sweet hound dog, a college education. I had a lot growing up. I have a lot now.

Today, though, I’m dishing a dose of a different reality.

Last week I was discussing caregiving options with my mother in the hope of leaving her alone for more extended periods of time. She was not happy about this. At one point she bitterly declared, “well I guess we’re just different.” When I asked what she meant by that, she told me she took care of her parents and gave up her friends and her personal life. (I know, by the way, that she only cared for her father – who adored her, whatever that’s like – with lots of hospice nursing help and sibling support, for a period of maybe two weeks, at the tail end of his life). I get it mom, I’m not selfless enough, normal enough, sacrificing enough. You don’t like me and you never have.

I’ve spent way too much time and effort attempting to be an acceptable daughter and it will never, ever, ever happen. It’s not a goal I can meet, because the goalpost is shifted and moved. There’s only what I’m not doing, how I’m not acting, what I should be like.

This ought to be more depressing to me than it is, but the epiphany has been a long time coming, and I reckon I’ve always known on some level that I need to be a very good girl, else love be withdrawn. Case in point:

On Palm Sunday morning, my father called me. I was planning a day out and had just finished setting my mother up with lunch packed in a cooler so she could have it while I was gone. I’d fed her breakfast and coffee, done her toileting, brushed her teeth, made up her bedding, changed her nightgown, clipped her nails, and made sure she had her newspaper, TV remote control, and tray with all her stuff. Then I came downstairs and grabbed my bag – I was getting picked up for a ride with my boyfriend and new puppy. I climbed into the passenger seat, relieved to be going away for a good chunk of time, and after about a minute I looked down at my phone.

There were 4 missed calls and 2 voicemails, all from my father, all over the course of no more than ten minutes. I really need to have you call me back, he said in one of the messages. While I was busy helping my mother, he had called. And called. And called. And called…repeatedly trying to reach me. Concerned, I started to dial his number, but he was already calling me yet again. I answered and asked if everything was okay. Yes, he told me. There’s no emergency. But he quickly went on to say he needed me to drive to a particular auto parts store to pick up an oil cap for his BMW and bring it to him, and without pause began to give me the address of the store and what I needed to do and say when I arrived. Trying to absorb this run-on sentence, I asked him how late the place was open. “I don’t know how late they’re open,” he answered impatiently. “I need you to do this now, in the next hour or so.”

“I’m not home right now,” I explained. Before I could tell him I’d get it as soon as I could, he snapped, “Forget it. I’ll find someone else to help me,” and click he was gone.

Now I’m hurt, and angry, and the interaction has ruined my free time away from caregiving. My back, shoulders, and neck are tightrope lines of stress wrapped in resentment. When I get back to the house later, dejected, I make some dinner and bring it upstairs to my mother, who predictably has a complaint about some aspect of the food. When I come back downstairs, my father is calling my cell. I sigh and let it go to voicemail, thinking maybe he feels bad and is calling to apologize. But he didn’t leave a message. Two minutes later he calls again; this time I pick up.

I shit you not, the man immediately starts giving me more instructions: “Yeah, Amy, listen, I got the auto place to send the piece I need to a closer store, so tomorrow morning you can go get it for me like you said you would.” Never mind that I never said any such thing. Never mind that mere hours ago he threw a tantrum and hung up on me. Never mind that tomorrow is Monday and a workday for both my jobs. Never mind that he could have taken a cab or an Uber to the damn store if he’d wanted the piece so desperately.

Nearly always I do whatever my father needs me to do, and I certainly avoid arguing with him at all costs. He can take any argument straight to fight, from speaking to screaming, faster than anyone I’ve ever known…even in public, where he has embarrassed and humiliated me several times. There’s no rational discourse. As a result, I back down from even the slightest argument 98% of the time just to avoid the storm, no matter how unreasonable or insulting he’s being.

But now I’m pissed. “I didn’t say I would get it for you. You told me you’d find someone else to do it, and then you hung up on me.”

“I haven’t asked you to do anything for me in a year and a half,” he replied, as though infrequency warranted his disrespectful, demanding bullshit. “You didn’t ASK me to do anything,” I countered. “You ordered me.” Now he’s ratcheting it up and talking over me, and we’re both yelling. “You owe me an apology,” I said angrily. “I’m sorry,” he immediately mumbled, not even trying to disguise the tone of a toddler who’ll say anything so long as they can get their way. I almost laughed. “You’re not sorry,” I said. “You just want something. Once again you called to instruct me what to do and when to do it.” There was some more talking over one another, and finally, in a loud, clear voice, each word distinct, I said LISTEN TO ME.


He hung up on me again — and hasn’t spoken to me since.

No respect for bad girl. No voice permitted, no defense granted, no anger allowed. It doesn’t matter that bad girl is taking a day for herself, or working, or busy, or tired, or just not around at any given time. Bad girl didn’t ask how high when dad demanded jump, so bad girl gets punished.

If that’s not conditional love, I don’t know what is.

It’s very telling that the last 3 words I said to my father were listen to me – and that, of course, he didn’t. I’m not even sure what I could have said, or if it matters. When he hung up on me again and never called me back, it told me everything I needed to know.

I’ve exhausted myself my whole life chasing my parents’ acceptance, affirmation, and approval. I don’t know why I keep doing it and I don’t think I can anymore. I’m 53 years old, for God’s sake. This is ridiculous. I am ridiculous.

I don’t have it in me to go up against one more thing. Most days my mother is belligerent, stubborn, unkind, picky, demanding, critical, and exhausting. She guilt trips me and gaslights me. There is no doctor, no nursing care, no diagnosis, no respite. She won’t have any of it. She can’t breathe and is very wobbly when she does attempt to stand. She uses asthma meds and a nebulizer that my aunt and I get for her. She refuses to let anyone but me help with her toileting or any of the myriad of caregiving tasks she requires – and I can never do any of it right. She lies to people and tells them she is up and walking. Then they ask me, and I am put in the middle. I can either lie like my mother or tell the truth and risk her wrath. She barely allows her own brothers and sister to visit, let alone assist – and when they do, she tells them Amy is fine, she doesn’t need any help.

They all know I do need help, but none of us can force her. She tells me she just wants to die. I called the Office for the Aging for advice and they told me she has every right to refuse care. To press the issue I’d have to hire a lawyer and attempt to become her guardian, which most certainly would be expensive, fruitless, and fraught with emotional distress of epic proportions for everyone involved.

She insisted on getting herself down the stairs to have her hair done recently, because evidently the hair dresser will come here but can’t walk up stairs…and my mom fell again, even with me right next to her, guiding and helping her slowly down each step. Luckily the fall wasn’t terrible and she didn’t break anything. The hair dresser arrived, tried to ignore my mother’s bleeding hand and scraped up forehead, gave her the haircut, and left. Then we were trapped because my mom was too weak and out of breath to get back upstairs. My boyfriend had to come over and literally carry her in his arms back up the stairs and into bed. Believe it or not, my mother has scheduled yet another hair appointment and is planning to try again to get down those stairs, despite my vehement protests. Before this second fall, she had been getting up, walking a little with her walker, and using the commode next to her bed – but now she’s stopped doing all of that.

I should have called 911 when she fell this time. I didn’t because she would have killed me. I might as well have; she’s killing me anyway. I’m so beaten down most days, I complete her nighttime caregiving rituals by 6:45pm and lie down by 7, where I can carve out peaceful time to listen to audiobooks and play a word game on my phone before going to sleep early, sometimes even before the sun. I think I love sleep more than I love just about anything else right now. Sweet, dark oblivion.

But I’ve got to stay on top of Jonah’s future living situation and prepare for an annual work event. And since I have lived here, we had a clogged toilet plumbing disaster, tree branches came down over the driveway, the mailbox fell over completely, the shower handle came off in my hands, and the downstairs toilet and kitchen sink faucet both broke and needed replacing. Now siding fell off the side of the house and I need to figure that out too.

My mother insists my 9 minute showers are too long (I never heard of anyone taking a longer shower than you do!), the vegetables I serve are not warmed enough (I like my vegetables hot), her drinking water isn’t properly chilled (you didn’t let the water run long enough), the soft washcloth for her face is not suitably warm (have you ever heard of hot water?), I clutter up everything (by purchasing a plunger), I rearrange the whole house (by putting the bathroom rug in the wrong spot and clearing out 2 drawers for my clothes), I serve dinner too late or too early, the coffee is too weak or ice cold, I’m not cheerful enough, the house isn’t warm enough, I’m making too much noise (what’s all that banging?), I took too long grocery shopping (I thought you got in an accident!)

She calls my cell from the phone by her bed 10-15 times a day. You left a dirty glass up here. You need to turn the light on in the hallway. I need to be changed again. Did you bring in the mail? I need a shorter straw. Don’t forget it’s garbage day.

You can’t make this shit up.

Yes, I know I sound manic and crazy, desperate and complaining. I know I need more than one kind of help. I started tele-therapy yesterday with a new therapist, and I really like her. But my mental health is shaky and I need it to be stronger.

It’s going to get better. Sometimes my mom is grateful and will tell me she doesn’t know what she’d do without me. Sometimes she wants me to sit with her and watch Wheel of Fortune and Jeopardy. Sometimes when she’s getting changed she says “you poor thing.” She usually says thank you when I do things for her, and I know she’s glad I’m here, even if it doesn’t seem that way very often.

I can place my focus on those things…and on feeding the birds and bunnies (and once, a turkey!) outside the window where I work at the kitchen table. I can focus on my friendships and my son, my boyfriend, my bio half-sisters and brothers, my aunts, uncles, cousins, pets. I thank God I can work remotely for both my jobs. I am grateful for the sunshine and the springtime.

Jonah’s field trip and his prom and graduation are hopefully going to be fun. My friends and I are planning a few day trips. I’m going to get away for an overnight, somewhere, sometime. Don’t ask me how. I need to believe that I can. It’s been more than 4 months now but I can’t just pack up and move out, as much as I’m tempted sometimes. The longest I’ve left my mother is 6 hours, and I usually pay for that time one way or another upon my return. As often as not, whenever I am gone, she calls me and tells me to come back.

My life has been hijacked and I need to practice some radical acceptance, lest I end up admitting myself to the mental hospital again or jumping bye bye off a cliff. Neither my mother nor my father is going to change. I can only change the way I react to them. I can assert I am worthy of basic respect and common courtesy, and that just like every other person in their lives, I am sometimes unavailable. I am not a servant or a slave.

I think I’m going to start a separate blog where I talk about stuff like this. Or maybe move these kinds of conversations to my portfolio at writing.com. Something. Today, though, I’m puking it up right here. It helps me to do so. I needed to vent.

May peace be with you, my peeps. For now, I’m out.

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First, for full transparency, I have worked in the Independent Living (IL) disability community for nearly 7 years.  I am very familiar with the IL movement and its philosophies, and I wholeheartedly agree that all people with disabilities deserve respect, dignity, and the same rights as those without disabilities.   As an individual, I advocate with and/or financially support many disability organizations and initiatives, including the NYS Disability Rights Hall of FameFair Pay for Home CareNational Alliance on Mental Illness, the Brooklyn Center for Independence of the Disabled, the National Council on Severe Autism, and the Disability EmpowerHer network.

Further, I am expressing myself as an individual and not a representative of any organization.

I am a woman with disabilities as well as the parent and legal guardian of my 21-year-old son, Jonah. If you are new to this blog, I’ll tell you Jonah is an engaging young man with a great sense of humor. He loves music, walks, car rides, trains, swimming, hanging out with his caregivers, and visiting with his parents, among other things. Jonah is verbal and usually expresses himself in short phrases. He also has severe/profound autism, severe intellectual, cognitive, and developmental disabilities, glaucoma, and aggressive/violent behaviors. 

I recently received an anti-guardianship letter in my work email. After reading the letter, I decided to contact two members of the organization’s board to ask questions and offer a different perspective.  During both of those conversations, I was invited to present my thoughts on guardianship, express concerns about their hardline approach to guardianship, and relate my own journey in obtaining guardianship for Jonah. I felt heard by both of these individuals, and they both agreed that further conversation is needed. 

They subsequently brought my concerns to the board at large. I received an email from a board representative in which it was incorrectly assumed I needed instruction about the nature of IL and its mission. I was not asked any questions about my situation, nor was any interest expressed in my voice. After I replied to the email and tried to explain myself, I received an answer assuming I was writing solely as a parent in need of edification about Supported Decision Making (SDM) as an alternative to guardianship. Had that board representative taken the time to ask about Jonah, it would have become apparent that SDM is not an appropriate solution for him.

I decided to respond here, and talk about a few other things while I’m at it, as I don’t wish to attack any individual or group but rather address some issues I’ve observed about the disability community in general.

I am somewhat familiar with SDM but to learn more I visited the SDM website link provided in the email. I reviewed the information and watched the videos, each of which profiled an individual with disabilities making complex life choices with assistance. In every case, those profiled had far greater cognitive, behavioral, developmental, and intellectual abilities than Jonah.  I am not underestimating my son. Jonah, and many others like him, simply do not possess the ability to have conversations about decision-making, to weigh the consequences of their actions, or to formulate goals, no matter how diligently they are guided.

Jonah has his own room in a house at a residential school for individuals with similar severe disabilities and self-harming/aggressive behaviors.  He needs 24/7 supervision and supports, and he requires a restraint protocol for his violent behaviors. Anti-restraint and anti-congregate care rhetoric is ubiquitous in the disability community. I’d like to hear a solution in lieu of restraint while being physically attacked by Jonah or any other individual with severe autism. I’d like to know where we can house and educate our children when our windows and walls are destroyed, our families live in constant fear of physical injury, and our children are kicked out of special needs day schools because of violent and/or self-harming behaviors which cannot be mitigated.

With the right support, some insist, everyone can live independently in the community.  That sounds great, except the level of support Jonah needs is not only unavailable – it’s nonexistent. In fact, he is ready for an adult program and there is currently nowhere for him to go. These realities do not make me pro-institutionalization, pro-congregate care, pro-restraints, pro-guardianship, or pro-nursing home. I am frustrated when parents are dismissed as short-sighted or, worse, are attacked by those who seem to believe there are no people with severe autism and severe behavioral/cognitive disabilities. There is a pervasive and condescending anti-parent tone to many disability conversations and conferences; while I agree that choices made by an individual should supersede those of a parent, parents need not be perceived as enemies by default.

I most certainly support the right of all people with disabilities to practice self-determination. But possessing the right to do something isn’t very useful if you don’t also have the ability. Some individuals with disabilities simply can’t make the choices that the disability community so ardently insists they have the right to make. I challenge anyone to offer Jonah SDM services.  I challenge them to make a video about Jonah, and in that video present important life choices to him, using PECS or any other means of accessible communication.  Please quote his responses, verbal or otherwise.  And don’t forget he may physically attack you at any time during the process.

Of course, I wouldn’t expect anyone to do any of that.  People like Jonah – and those more severely impaired than Jonah – don’t fit into the preferred narrative. It’s easy to see why. Their dependencies are inconvenient and their stories aren’t pretty. Most autism groups look right through them, and most self-advocacy networks seem embarrassed by them. Too many disability organizations claim to represent ALL people with disabilities – but they don’t want people like Jonah on their websites.  They don’t want people like him in their videos.  They don’t want to see people like him at all.

To deny the existence and experience of individuals like Jonah is an egregious offense on the part of any disability community that calls itself inclusive.  If you refuse to acknowledge him, you’re not alone.  The significant population of severely autistic/profoundly intellectually, cognitively, and behaviorally disabled individuals is almost always overlooked.  I’m used to that.  But I’m tired of seeing them swept under the rug during these important conversations.  It’s as if we advocated passionately to get these individuals out of workshops and Willowbrook, then turned our backs on them completely.

One can support the IL movement AND allow for guardianship, restraint protocols, and differing living situations if necessary and, most importantly, where there are no workable alternatives. These things are not mutually exclusive.  I’m proof of that, and I’m deeply disappointed that anyone in the disability community needs reminding that people like Jonah exist. Their unique needs are just as valid as those with higher level cognitive, behavioral, and intellectual abilities.  It’s important to remember they cannot advocate for themselves to say so – which makes them all too easy to ignore. 

If the very disability community to which they belong won’t acknowledge them, who will?

Until the National Council for Severe Autism (NCSA) was formed, I didn’t feel people like Jonah were represented anywhere. NCSA’s guardianship position statement says, in part: Guardians provide an invaluable role in maximizing the quality of life of severely autistic individuals, and NCSA supports guardianship as a fundamental protection for this vulnerable population. The statement also points out some important concerns regarding SDM.

I stand by my decision to obtain guardianship of Jonah as the best and most caring, logical way to ensure he enjoys life as independently as he is able, with dignity, in the least restrictive environment. 

I am not asking the disability community to change its intent to ensure people with disabilities have the right to live and work independently in the community, lead others, and have self-determination.  I agree with that important mission. I also support the fight for fully accessible communities, and I hope someday my son can live in the community with the supports he needs.

In the meantime, I do wish to see kinder, more respectful and open-minded discourse with individuals who question a disability organization’s stated beliefs. I do wish to see changes in the disability community’s thinking and rhetoric to reflect full inclusivity, crafting language that acknowledges all populations of individuals with disabilities and provides exceptions to some of the hardline beliefs which, as they stand, are both exclusionary and ableist.

Nothing about us without us.  That means all of us.  

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bigger than bargained for

Well I did say in the last post that this would be a big year — but I had no idea just how big.

A few days after I last wrote, my mother fell. She didn’t answer when I called her that morning, which was weird enough – but when she didn’t call back after I’d left a message, I knew something was wrong. So I drove over and found her lying on the floor of her bathroom, frustrated and hurting. No bones were broken, so over the course of a few hours I helped her up and back into bed (she absolutely refused to have an ambulance come). I’ve been living here ever since, taking care of things and carving out a space for myself in this sea of fake flower swags and Thomas Kinkade. As if to illustrate Murphy’s Law, the Life Alert emergency response system I’d ordered arrived on her doorstep later that same day.

And so we began a new journey, on a foggy road, with no clear path ahead and random raging storms. My mother will not accept nursing/medical care, so we’re kind of flying blind. She isn’t breathing well and she’s very shaky, but she enjoys her puzzles and her meals and her TV, and for the most part we are getting along.

Still, I regularly bitch to friends and family about how stubborn my mother is, how tropical she likes the heat, or how exhausted I am…but I’m also grateful. I’m grateful I’m not in my 20s, itching to play pool and drink margaritas with my friends at Café Hollywood on Lark Street. I’m grateful it’s not summertime and I’m not missing out on trips to music festivals or Hampton Beach. And I’m grateful I’ve got some stellar friends and family who have provided support, gifts, flowers, food, opportunities to get out, and company — all of which make a huge positive difference.

I marvel at how the experiences throughout my life have led me to this caregiver role. I had a child in diapers for 9 years, which better prepared me for this. The pandemic sent us home for work, which enabled me to move my office for both jobs here. Working as a caregiver some years ago taught me a trick or two in finding ways around difficult tasks, like changing sheets when someone’s lying in the bed. I reckon I was about as ready for this as I could be.

Luckily my mom loves cats, so it was a no-brainer to bring my two cats with me. And I’ve been able to get out for a few hours at a time here and there. When I visit Boo I’m gone for at least 5 or 6 hours, so on those days I serve my mom a hot meal for lunch and wrap up a peanut butter & jelly sandwich for her dinner while I’m away.

When I get frustrated, I try to put myself in her shoes. Her home has been invaded and she’s lost a lot of her independence. She doesn’t feel well, or strong, or in control of anything. She turned 80 in her bed. (I sang Happy Birthday and brought coffee, plus one blueberry muffin with a candle in it). We’re doing the best we can.

Speaking of birthdays, Boo is almost 21, and all our minds are blown. 21?! How did that happen?

I’ve had great visits where he devours his pizza & wings dinner, then we walk together around the campus, always with music on. His current favorite song is Attention by Charlie Puth, which is about as pop as pop gets, but he still requests Guster first and foremost, usually on a playlist I made that begins with Fa Fa. Last time I visited, it was a recording-breaking high temp of 64, so we ate at the picnic table!

I have a few new photos to share, too – Jonah likes his beard and always answers “no” when asked if he wants to shave it off.

I’d like to blog more often, because there are other things to say – but most days I’m too tired. There’s a meeting on Tuesday about Jonah’s “exit plan” from Anderson, which so far isn’t much of a plan. We shall see…

Be well, my peeps. Back soon, I hope!

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This year’s Christmas card came out a little dark, but I love the pictures anyway:

Last week when I drove down to see Jonah, there was a mix-up at the Visitor’s Center and both rooms were occupied, so we made do by having our dinner in the 2nd floor conference room. Briana was there to help, and the room had napkins, chairs, a table, and my phone to provide the tunes – so we had everything we needed. This time Boo wanted to dance, and he pulled me up to bop around as he grinned and giggled. It’s always so awesome to see him happy. He must have said thank you 3 or 4 times – for handing him my phone, for giving him a drink, for opening the blue cheese container…and each time it feels like a precious thing. Spontaneous language of any kind is special, and I know it took a lot of work to teach him. After dinner we took a walk in the dark and cold, and I couldn’t help but wonder how much longer he’ll be at Anderson. On March 7th he’ll be 21, and he’ll graduate in June.

I’m told he’s on a special list for kids aging out who are not currently being considered by any agency, and there’s a meeting soon about that. Jonah can stay at Anderson if he needs to, and it looks like he will need to, at least for a while. As Jonah and kids like him get older, there will be fewer and fewer spots for adult housing and day programs. Openings are few and far between. I used to think I’d do a lot of research and then Andy and I would choose the best possible placement for Jonah, but it doesn’t work that way.

There’s a portion of the disability community who vehemently insist that all people with disabilities can and should live independently, in their own residence, in the community. I’m not sure if they simply refuse to acknowledge people like Jonah or if they really believe all necessary supports will be provided to enable someone like him to live at home. After all, it’s just me here. I’d need 3-4 strong DSPs (direct support professionals) in my home pretty much 24/7, and that’s not on the menu, even if I had a big enough house to hold them all. If I did, and if I could, I’d love to have Jonah living with me again. I’m amazed at how much it hurts sometimes, even after 11 years, to live apart from him. Mainly I want him to live as happy and fulfilled a life as possible.

I’ve joined the National Council on Severe Autism‘s National Grassroots Network (NGN). To quote NGN, “We exist to help ensure that policymakers tackle autism as an urgent national priority — and are fully informed about the realities of autism and challenges faced by families across the country. We in the NGN will operate in all 50 states and across all congressional districts to emphasize the needs of the rapidly growing population of children and adults who need continuous support, and often, specialized services.”  I’m thrilled and grateful to be a part of an organization that finally addresses the needs of individuals like Jonah.

You can see NCSA’s official positions on a variety of issues in its position statements covering topics such as guardianship, housing, language and more. I stand in agreement with them all.

For now we’ll move one step at a time into the future, thankful for Briana and the other DSPs and teachers at Anderson, who care for and teach Jonah every day.

Happy Holidays, everyone! I wish you all a blessed 2023 full of love and laughter.

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boo’s playlist

I’m so grateful when Jonah’s teachers and caregivers send me videos, and I have 2 to share…

In this first one, he’s learning how to play a game. (I love how he’s very conscious of being filmed – and how much he seems to love it):

Boo plays a game

In this one, he busts some moves while listening to “Attention” by Charlie Puth, which has been his favorite song for a while. (The song on the video was added by Siara, the awesome DSP who send me the clip):

I watch the videos over and over, and they always make me smile.

Boo had a (mostly) great summer, with rare aggressive behaviors and lots of fun. He got to swim and play, and he spent a lot of free time with headphones on, listening to his tunes. I made a playlist for him on my phone and put it on shuffle, for when we visit and walk around the campus. Recently, I’ve been sneaking some tunes by my old favorites into the mix, to test out his tolerance for them. “I’ll Tumble For Ya” by Culture Club was a big hit, and anything by Bob Marley always satisfies him. Other current favorites include “Cake by the Ocean” by DNCE and “Watermelon Sugar” by Harry Styles. I’m going to experiment with some Wham! and Duran Duran. I’ve tried some different classic rock songs, but he usually just hands the phone back to me and asks for Guster. Actually, every time he doesn’t like the song, he hands the phone back and asks for Guster — as if Guster is his default standard for acceptable music.

In that we are alike.

More updates to come….happy Autumn everyone!

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avoiding autism

One of my friends is really into the Netflix Show Love on the Spectrum and asked me if I’ve seen it. Well, actually, she kind of assumed I watched it. If I had a dime for every time someone told me about a book or movie or article or documentary about autism, I’d have enough to fill a wheelbarrow.

I’m usually just not interested. For 20 years now I’ve lived and breathed the reality of severe autism – and for a few of those years, I did it in crisis mode, documented here in the beginning of my blog. While there are exceptions (I recently read and loved The Maid by Nita Prose, for instance, whose main character is a woman who seems to be on the spectrum), I’ve kind of had my fill of autism and will often even avoid autism stories.

I’m particularly uninterested in “I cured my kid of autism” stories. If there were a “cure” for the severe kind of aggressions and/or self-injury seen in individuals like Jonah, we’d all be on board, believe me. Not to mention that for many people with autism, the notion of needing to be cured is insulting, and rightly so. What needs curing are those elements of autism causing distress, pain, and harm…the things that prevent the person and those around them from quality of life. That’s how I see it anyway.

At any rate I’m over here not watching Love on the Spectrum, though I know it’s supposed to be good. Maybe I’ll check it out sometime. I’d be lying if I told you the stories of higher-functioning people didn’t sometimes make me envious or sad. I’d love to have a conversation with Boo. I’d love to see him making friends, going places, achieving dreams, falling in love…participating in the world. And at the same time, I’m grateful he is innocent and unaffected by all the things that bring the rest of us down….fear of war, on high alert for school shootings, the divisive climate of our country, disastrous climate change, the recession, all of it.

As I get older, I feel gratitude more freely and frequently. Every meal, every friend, every heartbeat. I have enough and I know it. My son is happy with his music and his swimming pool and lives under the watchful eye and heart of Briana and others who love him. He has a mother and father who love him dearly.

I’ve been feeling better, embracing and strengthening my relationships with friends and family, going places and doing things. So far this season I’ve kayaked at a local lake, hiked in the woods, spent 3 days at the beach, shopped farmer’s markets, joined a dining-out group and met new neighbors, planted flowers, took a watercolor class, attended a wonderful weekend music festival (where Guster headlined one night), saw Janice Ian at Caffe Lena, and of course visited Boo a bunch of times.

I’ve settled into somewhat of a summer routine with Boo, whereby I stop at a local restaurant to pick up food for Jonah and his caregivers (usually Briana and Siara), and we all eat at the picnic table by his house, then take a campus walk. Always Jonah wants my phone to play music; at his request, the music he wants on our walk is Guster. Always the campus is beautiful. Almost always, he reaches for my hand and we sometimes dance or laugh.

Here’s the photo from the clever Mother’s Day card Boo/Briana mailed me. Gotta love that smile!

Although I don’t write here as much as I used to, I plan to keep posting updates and news of Boo. He’s still an interesting source of stories, and as we near his graduation and move into an adult program, there will be a lot to share.

I have faith it will be positive news.

Wishing you all a bright, beautiful summer full of love!

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the many faces of boo

Can I believe my son is 20? Nope. I like him with the beard and ‘stache, though I reckon he’s just as handsome clean-shaven. Two pics are Jonah with his Easter Basket from Krause’s Handmade Candy, and a very focused Boo dyeing eggs. The 3rd photo is Boo on March 7th, his 20th birthday, about to blow out his (chocolate) cake (with chocolate frosting). HIs house threw him a big party, complete with pizza and wings – and all the blue cheese he wanted.

After another postponement, he finally had the operation to remove a cyst on the back of his neck. But he picked at the bandage and it came off, and the wound is not healing well. They tried to glue it together with skin-glue stuff, but every time he turns his head it stretches and finally breaks. I know they’re on top of it and he’s going back to the doctor soon, though I can’t help worry. I hate when he has health problems of any kind. I always think, “isn’t it enough that he has severe autism and is blind in one eye?” As if there could be a limit to what one must endure in this life.

I’ve been better and then not better, struggling and trying new medication, meditating and listening to a lot of Pema Chödrön, forcing myself on the treadmill every day to walk at least a mile uphill, forcing myself out when it is sunny, like now. I am not out now, but I was earlier. I swept and raked and cleaned a little. Some days doing just a little is a lot.

I shop for my mom once a week but I do it at 8am on Saturday or Sunday, so as to be there with but a handful of other early birds. If I try to go at noon with all those crowds of people I swear I’d have to abandon the cart. When it gets bad inside my brain, I remember the song “A Private Future” by the Stone Roses, and how they sang, “Live a life you love, choose a God you trust, and don’t take it all too seriously.”

It sounded like good advice then and it sounds like good advice now.

More to come in May. And randomly sharing a photo I took at the Denver Aquarium. Never underestimate good timing!

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Things are messy. There is a lot I can’t say until it’s all over. I know that might not even make sense, but it’s been so long since I’ve written that I feel the need to give an update, if only to say happy new year…and to tell you my last visit with Boo was a wonderful one. I made food this time – cooked taco meat and brought down all the fixings, and watched my son devour 3 tacos consisting mostly of sour cream. The 2 staff members who were with us ate too, and afterward we took a campus walk (gratefully it was the warmest night of that week, which was otherwise frigid).

As usual, the 2 staff members walked a bit behind Jonah and me. Jonah almost always wants my phone to play music, but this day we held hands and sang 3 Guster songs together instead. In the middle of the 3rd song, he suddenly shrieked with laughter and yanked his coat & shirt up to do his “happy belly slap.” I was thrilled, and comforted, and drove home smiling.

Still I wake every day scared, anxious, and unsettled, as though I’d done wrong or was facing something dark and foreboding. A good friend hurt me terribly and now I feel sick inside, afraid to make myself vulnerable again. I joined bumble and am dating a good guy who plays the guitar and loves music. I own a guitar I’ve never learned to play, so now I’m doing that too. We’ve been hanging out a lot, and we have fun, but I can’t shake feeling uncertain, so I just allow myself to feel that way until I don’t feel that way anymore. I meditate semi-regularly, I walk the treadmill, I do intermittent fasting, I practice the guitar, I try to stay forward-facing. I willfully compartmentalize & ignore the thing I can’t talk about yet.

My parents are getting weaker, older, and more vulnerable, each currently living on their own, and an uncertain future of caring for them as their only child stretches out before me like a looming threat. I don’t know if I have it in me but I’ve got to have it in me, like it or not, for as long as it takes, despite my own shaky mental and physical health.

My heart skips and jumps and races and stops, so I went to the cardiologist and wore a heart monitor for the week after Christmas. My resting heartbeat is more than 100 BPM – and the highest heartrate of that week was 155, just after midnight on January 1st, when I am pretty sure I was asleep, which makes no sense at all. At any rate, now I’m on heart meds too.

Add to all of this a frigid winter and 2 jobs full of work, and it’s enough to send me to bed most days by 8pm, escaping into blissful sleep until the early morning brings its anxiety to drown me anew.

I’m hoping springtime and sunshine will help. It sure can’t hurt.

I’m exhausted.

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above and beyond, revisited

So I recently posted that Briana, Jonah’s wonderful house manager, won the Anderson Center for Autism’s Above and Beyond award this year, after being nominated by yours truly and two other parents as well. They cancelled the live event because of Covid concerns, but yesterday Briana texted me to say they finally sent her my speech, which I had recorded via Zoom. I’m happy to share it with you all:

I had to sit and rehearse the speech over and over until I could get through it without “ugly crying.” I could have gone on and on about Briana – but am so grateful to her for everything she’s done and everything she is. Jonah is so blessed and lucky to have her!

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The past two times I’ve visited Boo have been on a Wednesday, around dinnertime, when his house has the staff available to help keep everyone safe. It felt strange, like Jonah and I were famous and required bodyguards to watch over us. I am grateful, though, for otherwise I’d be hard-pressed to visit him at all. I don’t have a whole lot of people willing to travel down with me and risk being attacked by my son. And as of fairly recently I am single again, so the pool of helpers is now even smaller.

On the first Wednesday, there was a bit of a miracle. After chowing down some Micky D’s, Jonah sprang from the picnic table and declared “walk” – so I jumped up to join him, and 3 staff members followed us at a slight distance. The campus walk we take is a little more than a mile…a beautiful mile, really, past a pond with a fountain spray and lots of wooded areas. As we walked along, I gave Jonah lots of space, keeping pace with him but from about 8 feet to the side. At one point about a third of the way in, Boo started to move toward me. I kept cool and waited. With his right hand holding my cell phone playing music, he threaded the other hand into mine and held it firmly as we walked along. Like magic. He hasn’t held my hand for any length of time in years. He simply doesn’t do this. And yet there we were, hand in hand as if we always walked this way together.

Briana, walking behind us, took this photo. She told me later she was holding her breath, almost in tears. I was too. I was a little in shock and grinning wide.

He held my hand for the whole rest of the walk, and when we said goodbye he offered me his cheek to kiss before he went inside the house.

Driving home, I thought about the strangeness of our relationship, how little we can communicate verbally and how amazing the simple act of holding hands. I thought about happiness – how it comes to us in moments…a fresh-baked cookie, a tiny baby’s smile, a winning poker hand, the full moon on a cool October night.

I thought about how happiness can be just as much the absence of something as the presence. How when you’ve got a headache, happiness looks a lot like not having a headache. How when your child lives away from you largely because of his violence, the absence of aggression becomes a state of joy. In this light and from this frame of mind, anything beyond calm is a bonus – and this day, a jackpot.

I am filled with gratitude for Briana and her staff, and Anderson, and every tiny decision that led us to its doors. Don’t get me wrong; Jonah isn’t a made-for-TV movie success story, and his life is not ideal. When they take the other kids in the house for apple and pumpkin picking, Jonah stays behind. It simply isn’t safe to take him. And though my first reaction to this may be sadness, I have to remember he really doesn’t seem to care. Sometimes I struggle not to impose my own ideas and ideals on his life. I have to pause and understand what happiness looks like for Boo might be very different. What success looks like for him might be to manage his emotions in such a way that nobody gets hurt. And maybe what love looks like to him is taking his mother’s hand on a walk around the Anderson campus.

I still awaken afraid, and the new path I’m forging is frightening too. But I’m trying to approach it like the Buddhists do. I sit in the quiet and allow myself to feel the emotion, however scary or strong. I notice where it arises in my body, the fear or the anger. I can feel it in the set of my jaw and the tightness of my shoulders. I find that when I do this, neither fighting nor ignoring the emotion, it passes. Like a craving for a cigarette or a sweet. It passes, if you let it pass. Everything changes.

I pause and try to examine my feelings with curiosity and compassion. When I get caught in a negative self-narrative, when the panic arises, when regret twists my insides into painful shame, I say to myself “thinking” and come back to the breath. Come back to the now. What we think is what we tell ourselves, and often what we tell ourselves is false. We buy so easily into everything we think, believing it all without question. It’s all just thinking, really.

Those are some of the ideas I’m putting into practice, anyway. I fail about as much as I succeed, but the wisdom I find in Buddhism feels more like truth than anything I’ve encountered yet.

Do I sound like I’m flaking out? So be it. I am a deck of cards old now, past caring if I sound flaky.

Onward ho.

Small wheel turn by the fire and rod, Big wheel turn by the grace of God.
Every time that wheel turn ’round, bound to cover just a little more ground.”

~ The Grateful Dead

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