Susan's Blog

Monday, June 25, 2012

Faux Memoir?

Mommy forgot your pills. Blue box is on counter. Blue box is closed. Your pills inside.

You walk. Feet, feet, feet. Floor, stomp. Pills are still there. Turn around, walk to kitchen. Pills are still there.

Mommy stairs. Mommy. Mommy is talking. “Nat, what is it?”


Eyes. Walk, feet, light, window. Chair. Sit. Listen.

“Oh, man, forgot the pills again. Well, too late now. Forget it for today.”

Pills. No pills. Blue box, pills inside. Time for your pills! Feet start to walk. See the blue box. Blue box. Pills inside. Home, dinner soon, pills first. Feet walk, loud feet. Window, light, dinner.

Pills. No pills.

Autism Mommy Swami #11: PTT or Potty Training Trouble

Dear Swami,

I am SO FREAKIN’  frustrated with potty training. The ‘special ed pre-K teacher who has been doing this for years’ is DOING THE SAME THING OVER AND OVER (the definition of insanity) to try to get B to pee on the potty. There’s alot of info out there. We are struggling. We also have 11 and a half year old dogs who are struggling with potty & a 6 year old who cries “Will you wipe me now? ” No. please. At least he can ask. At least he was easy to potty train (when awake) I’m just waiting for my husband to need help. Oy and Vey. I have  BCBA behaviorist person consultant who gave me a chart to put his progress on.  Wants me to spend hundreds on a potty alarm for his pullups. There’s barely any progress! Did you have trouble potty training Nat? Just curious. Many have no problem at all potty training their kids falling somewhere on the spectrum. I do.  No rush on this, but thought I would ask.  You know…they make diapers for very tiny ones and big old adults but not many options for the in betweeners. Running out of time????
Thanks so much!


Dear Jewels,

Potty training is the worst. Just the worst. I had trouble training two out of three of my sons —  and it was awful. We had years and years of #2 accidents way after they had peeing down, and I had no idea what to do, despite a lot of expertise around me. Never heard of potty alarms, what will they think of next? That sounds scary. No, all we had was a Cabbage Patch kid fake little toilet that actually made pee sounds when you pushed down on the seat, and it could make a flusher sound, too! It kept at least the Swami entertained for hours. We had books — mostly really stupid boring ones that also didn’t work, and we had reinforcers galore. Every day he would go the window in his room, look out, and drop one in his pants. Even with the potty and me right there. It just wasn’t happening.  By the time Nat was five, I was at my wit’s end.

Then we went to Disneyworld and when we got to the hotel, I showed him the ultimate reinforcer: the Cadbury chocolate creme egg.  (By the way, this is all in my first book, Making Peace With Autism.) I then showed him the bathroom. I said that when he pooped in there, he would get the egg.

He went in and pooped in the toilet, first time. Got the egg, and after that, forevermore.

Was it that it finally sunk in? Was it the extra great reinforcer? Was it the new environment? Was it that he is so literal, God bless him, that he thought I was telling him to go and do it right then and there! Or was it that some neuron fired?

Or was it that he was five, not 2.5 or 3.6 or whatever the damn books say we should be when we are at last willing to let go of what feels like a part of ourselves? It’s hard for me to believe that any of us get toilet trained! But here’s the thing: developmental disorder/delay means developmental delay! AKA some things will take longer!!!!  So can’t we wait until a child is developmentally more ready?  I don’t think enough can be said about developmental readiness, of late blooming, of late intervention. Everyone does early intervention, and that’s great, but if it doesn’t take at that point, then what? People still think there’s a tiny window of brain elasticity until 5, or 10, or whatever, and let me tell you, that just ain’t true. Our guys are often late bloomers. Yet the schools and daycares insist that they be potty trained by a certain age. Whatever happened to accommodations? And by the way, didn’t Freud tell us way back when not to be too hyper about potty training?

You can see that I have little or no expertise in this matter, I am only answering as the Swami, which means I am consulting my own experience with my own children, which happens to go pretty far back. The part that the Swami can help with is encouraging you to consult yourself for the truth, to go with your own gut and expertise about your child. In my experience, charting stuff had its place — like when I was a kid and quit sucking my thumb using a turtle calendar I drew — but that’s not what worked for us. Probably some combination of coaxing, guilting, some show of my impatience, and much rewarding is what did it. But I just don’t know.

I think that the best thing the Swami has to offer you is to see that all things pass — literally and figuratively. So keep that sense of humor I see in your letter, keep talking to experts, read, ask other moms, but the thing is, to some degree, children do what they do and usually they figure it out eventually.



Tuesday, June 19, 2012

Autism Mommy Swami #10: When is it enough?

Dear Swami,

When you have a child that is more severely affected by Autism, how do you determine how much therapy your child should receive and what is just too much? My son, Henry, is 6 and non-verbal, and though he has been in school and therapy since age 3, the approaches that have helped so many other little ones we know have largely not really helped him. He has learned many things over the last few years, but continues to make very slow, steady progress seemingly regardless of what services he is receiving. Do we keep adding more services or let him be sometimes? And, how do you let go of personal guilt and feelings that you aren’t doing enough?

Also, how did you navigate the school system with Nat? Did you keep him in public school or go private? I feel like our public school means well but may not be fully equipped to handle Henry, yet I don’t want to take him out of the community. Did you ever do periods of just services at home or did you keep Nat in the system?

Thank you.


Dear Lori,

My goodness, the Swami’s bejeweled head is spinning from the thought-provoking questions! Let me start by telling you that ultimately the answer is going to come from your own heart, gut, and head. But the Swami always has an opinion and experience to conjure up, and so I will do my best. So you want to know how to judge that you have done enough in terms of therapy for your guy. But what I really think you are asking is for permission to slow down. Permission, also, to have certain feelings of tiredness, disappointment, discouragement, and all the other ugly things we don’t want to feel.

Let me pick the low-hanging fruit first: what do I do about the guilt that I am not doing enough? I don’t do anything about it except feel it and listen to it. I try to figure out if there really is something left to be done, something that needs action that I haven’t taken. On Sunday when I dropped Nat off at home I was overcome with sudden remorse. Why was he living there? Why was he not smiling when I left? Is there something I should look into, check about staff or anything else? Was everyone taking good care of him? What kind of mother drives off and leaves her son to live with others, and can’t know how they really treat him?

I went over all the evidence, all that I know to be true. Nat told me to “go home.” Nat says he likes it there every time I ask, even when I ask in different ways. He has had multiple opportunities to let me know somehow if this is not good for him. And he has not.

What’s going on is my own sadness and perhaps guilt that I can’t keep him home with me. This was the choice my husband and I made, and it was not a perfect choice.  We had to weigh everything: Nat’s anxiety in our unstructured home; my other two sons’ anxiety over his unpredictability; our need to have some respite sometimes; Nat’s need for his parents’ love, that no one else can give him; Nat’s need to learn independence; and Nat’s chance to be more comfortable, with a new, structured life.

As I went over this in my car, I heard something that cut into the morass of uncertainty: You did the best you could at this point in time.  Live with it, you did your best. And it’s not so bad.

Is there a way you can tap into your own evidence about your son’s progress? You feel that all of this high-energy effort may be leading to slow and steady progress, and his learning many things. That is no small accomplishment. Progress, fast or slow, is what you want. I’m sure he himself is trying his hardest to learn, to make sense of the world, to please.

You are wondering if you need to add even more services. You also wonder how I navigated the school system. Nat was sent to a private placement not too far away, and was in private placements pretty much his entire school career. Our school system supported that move. I mourned his loss to the community, but we doubled our efforts to take him everywhere and make him well-known in town and in our neighborhood whenever he was home by taking walks with him and going into restaurants, coffee shops, ice cream parlors, the bookstore, the supermarket… He was included that way. He participated in the local Special Olympics teams and got to know other local kids. So you see being in the school building is only one way to do it.  I did also have home services and tutors periodically, but he was always in school. Although I believed I wanted to homeschool him, my husband knew me better than I knew myself, and told me I probably would not like it in the end. So we supplemented regular school with home tutors after school. But not always.

The deepest message here is that with autism — and probably with all parenting — you have to make your own rules, set your own goals. You look at your kid, not others, and you figure out your priorities. What we did in terms of adding or subtracting therapies and services was to choose what we thought we could and should do more of, and also what we thought we could jettison.  Sometimes we pushed for more reading support, more speech therapy. Months or a year later we’d decide this or that needed to be tweaked or dropped. Sometimes our goals became clearer and we knew just what to do. The best thing that ever happened to us was Special Olympics, because that killed many a bird with one stone: with Special O, Nat became more social, more communicative, more athletic, more independent — and it all happened naturally, not in a therapist’s office. For us Special O took the place of therapies. Special O, and then once he was 14 or so, voc ed. Real and pragmatic activity spoke to Nat, fit his interests and skills. We stopped looking at him as a receiver of therapies, as a board to be written on, as clay to be shaped. We started to see him more, and felt that maybe, just maybe, his stims were interests and could become more like hobbies. His fast, circuitous walking… that eventually meant he could be a runner, a ball player. His need to line things up… well, now he puts away shopping carts at the supermarket for a living. His need to be with people without talking to them… that became Nat the partygoer, the social group maven, the desirable teammate.

You gotta decide, do your best, and then let yourself off the hook — provided he continues to progress. Looking at him, really seeing who he is, what he is good at, what he likes — that is how you will judge what more to do and what progress means for him.




Monday, June 18, 2012

Autism Mommy Swami #9: How Not To Do This Alone?

Dear Swami,

This may be the stupidest question you’ve ever been asked. I don’t know what else to do, so I’m writing it out anyway.

My son, K, is 5, soon to be 6 years old. He is verbal as long as he’s not upset (at which point all we get are shrieks, grunts and growls), but he is frequently upset, angry, and aggressive, though he can also be extremely loving and… well… “barnacle like” (which I say with love, I promise… but he literally clings to me every possible moment, which I often love and cherish, but sometimes can’t stand for one more second like when I need to use the bathroom or maybe breathe more than short shallow breaths). K has a lot of sensory issues and a lot of anxiety. Change is extremely difficult for him.

We’ve been struggling mightily since before he turned 3 years old. We’ve had no help or support yet from the school system and have had to obtain all of his services and therapies privately (which I’ve had to run him to and from and pay for out of pocket while also attempting to hold down a full time job out of financial necessity and also care for my 8 yr old daughter).

We have no family here. I am a transplant to the midwest from the east coast and my husband’s family are all deceased. We are not very social people in general, never being ones in younger years to go partying or the like, and literally have no real friends locally.

We are very much alone.

The neighborhood we live in doesn’t have any families with younger children. We have nothing to connect with anyone on. We are not religious and do not attend church.

So very often I feel like I am drowning or suffocating. Like I Yet there is no other choice.

We have no babysitter, no respite care of any kind available to us. I am exhausted…. emotionally, physically, and financially. I am the primary caregiver and the one K looks to… nay… ~requires~… for everything. I spend hours and hours and hours researching everything I can, hoping to find something, anything, that might help. I can’t keep up with the house. The kids are in zero activities b/c I can’t figure out how to get them there and back again and or can’t figure out what K might possibly be able to participate in or tolerate.

Every single minute seems spent already… and yet I truly need to not be alone in this any more… and yet… I have absolutely no idea or concept of how or where to begin to make or find this village I’m supposed to build…much less when I will accomplish this when I can’t even seem to find time to eat or sleep or shave my legs… or think straight.

How do I do this? Where do I start? How can I find a connection when I can’t even get through the day successfully?

Thank you for even reading that, and if you do end up answering this one, thank you both for the answer and for keeping us anonymous.

K’s mom.


Dear K’s mom,

Even though we have already talked over email, I feel the need to reiterate some of what I said to you privately. My advice was to first of all find online support. You told me that you live in Cedar Rapids, Iowa, and that most services available are in Dubuque or Des Moines, hours away. The closest supports are in Iowa City. This means that you have to take every action possible to help yourself. To me, this means find people going through the same thing so that you see and feel that you are not alone (because you are not, by a mile). Even though you prefer face-to-face real world contact, that will be your longer term goal for the moment.

Your choices are limited and your soul is very much in demand by this child you love so much. Everything you say is very familiar. The Autism Swami has had many Alone times, even with groups nearby and caring people reaching out. This is because I, too have my preferences and I am tough to please. I choose my friends so very carefully and reluctantly let people in. But once they’re in, they’re in. And then I hold onto them like a suction cup. But very few can really handle my intensity, so I am alone alot. I love being alone now, but that has taken a decade to grow. I talk to myself, I laugh at myself, I sing to myself. I shop with myself, I berate myself. I am a pretty comprehensive friend of mine. I like it that way. So believe me, I do know what it is like to be alone, whether it comes from geographical distance or just plain pickiness. But I have learned how to embrace it and to feel my strength and revel in it.

But you don’t feel that way; you want an in-the-flesh friend who gets it, and you want time off from mothering.

Well, the ugly reality is, you live where you live and flesh autism friends are going to be hard to find. So what do you do? You look for a friend, period. You cultivate someone. I would look around for a person I feel a connection to, and it doesn’t have to be an autism connection. A good person is a good person, and that person will get it once she becomes your friend. You have to be open and interested to be a friend, and so you will let this choice person know up front what your life is like. Think of it like dating. Some things you have to disclose, others can wait. But once you find one good friend, that should do it for the most part.

Now, as far as respite: see if your support center in Iowa City has staff who can do even an hour a week for you. See if the DDS (Department of Developmental Services, in your state government (look them up on the web) has any funds for family support. Perhaps even your church has a kind parishioner looking to make a little extra money babysitting. You have to be creative and have your eyes open for the right kinds of people, the people who will love your little guy. Even an hour every few days will be a precious relief. Maybe a teacher would come for a little while, someone from the elementary school or a high school kid? You could be in the house but not right in the room.

Given how you feel about wanting friends, I would start with what is possible, rather than what is not. The Internet is as infinite as the Universe, and so you should be able to connect with other parents or autistic adults with whom you can have great conversations online. For example, are you pragmatic and interested in understanding autism in a cerebral and sometimes soulful way? You should read all of my books, first of all, (hey, I can plug on my own blog, right?). Take a look at TPGA, Thinking Person’s Guide to Autism. Or, are you in need of actual ideas and how to do things? Check out Lisa Jo Rudy’s books. You must, you have to read Sunday Stilwell’s Extreme Parenthood blog, and also Jess Wilson’s Diary of a Mom blog. All these women are accessible, smart, humorous, and kind. You can friend them on FB (tell ’em I sent you) and you can connect in a very satisfying way — daily.

For autistic adults who have a mind-blowing perspective, try Kassiane or Landon Bryce’s ThAutcast. You will find others from them.

So what does one do with all of the energy that must go into your child? Well, of course one gives that energy. But you also have got to figure out ways to free your mind a little bit, even if your body is holding your child. Find your non-autism friend and hook into Autism Facebook, and that will be a good start.


Thursday, June 14, 2012

Ben Graduates Eighth Grade

Well, my youngest son, Ben, is now a high schooler. Ben has been “at” that school his entire life; he was born when Max started kindergarten there. Ben started preschool there at 3, and the family has been involved with Lincoln for 15 years.

What a beautiful ceremony the school had! A great bunch of kids. In his speech, one favorite teacher said, “I feel as if someone is taking the stars from the sky and moved them to the southern hemisphere.” Ben was singled out for high honors 2 years in a row, and for being an artist. He carried himself with aplomb and looked soft and happy. And then sad. I saw him standing on the hill by the upper playground, crying, with Max’s arm around him.

Nat did not come. It was too complicated to pick him up at his house, and I also think that the ceremony and crowded reception would have been too much on him — and Ben. It’s Ben’s day, after all. We finished the evening with a great dinner at Cheesecake Factory, Ben’s choice.

Tuesday, June 12, 2012

Nat’s First ISP Meeting

We had Nat’s ISP meeting today, which is basically an IEP for adults. Although there are fewer requirements for the service providers to fulfill for their clients, Nat’s service provider and also his dayhab/day program staff seem more than eager to outline comprehensive goals for him.  Clearly charmed by his intense work ethic as well as his sudden smile and the occasional surprising flash of violet-blue Bambi eyes, his entire team wants to watch Nat soar.

Everything I heard pre-22 told me that Autism Adulthood would be the dregs of the universe, but it has been the opposite for Nat. Yes, it is true that Nat has Priority One funding (because of occasional intense episodes of frustration that can become self-injurious) and so he has enough support in his life. He is lucky in that way, lucky in the way that would otherwise be considered unlucky, for this means that he also has an IQ that measures pretty low. (Although that reality is not shameful, it is nevertheless an acrid, poison-tasting reality that IQ is tallied in a way that is completely anti-autistic in nature. If you don’t see the forest, nor the trees, nor the bark, but instead you are listening to the quietest of animals there, you will presumably have a tough time choosing which thing doesn’t belong. I hate the IQ as much as Theory of Mind. Anti-autistic biases.)

Yes it is true that we live in Massachusetts, the land of choices, open-mindedness, and opportunities. And yes, Nat has a couple of championship fighters in his corner. Ned and I have been through Rocky Balboa-like training, punching everything in sight instead of sides of beef to get what Nat needed.

But, the other side of the equation is that the service providers are indeed out there. Today, I experienced the beautiful reality of that. I walked in, and there was Nat, sitting straight as a rod in neat pink button down and khakis, at an oval table with our DDS liaison, the house manager and direct care staffer we love, the day programs director, and the dayhab coordinator. I sat around that table listening to reports of Nat. S, the program director, talked about how “we haven’t had any concerns, for the first time with one of our workers… he really understands — Nat, you really are very good in the parking lot, with the cars backing up.” (Something like that.)

All discussion included Nat. Although there were times that we lapsed into “he,” we all quickly remembered that Nat was sitting right there. Everytime we remembered and spoke directly to him, he would not only turn towards the speaker, he would strain towards him/her, to really understand what was being said. His brows creased and his eyes focused sharply on the words, and he would answer. Oh, yes, he would answer.  So the DDS liaison directed her questions at him, and though she filled in or prompted him a little too much (because she doesn’t know how to structure questions for him to get his original language and genuine response), he conversed with her in his way:

“What do you do when you go recycling, Nat?”

“Take to the dump. Bottles.”

“What do you wear in the parking lot at the supermarket?”



“Orange vest.”

“And Nat, when you are not working, on Tuesdays and Thursdays, what do you do?”

“Meals on Wheels, recycling… play some basketball, walk the track.”

We also learned about Nat’s homelife a bit, and how he does out in the community with his roommates. Apparently he helps herd them when they are not paying attention! The lovely thing also was that Nat’s staffer always gave Nat the best possible interpretation: “He shows a lot of concern for his roommates. When we had the fire drill he was very good with them, trying to get them to go out.” No one said things like, “He really needs everyone to follow the routine, it can be a problem.”

We set goals having to do with improving communication via the iPad — typing and (well-monitored) Facebook and YouTube. Also, he still needs work on safety skills although we all felt that he does know all about looking for cars when crossing. Still, he doesn’t know about the asshole that goes through the red light when he has a walk sign.

I told them that my goal was for him one day to use his earnings to pay for more job coaching. Everyone agreed that that would be great, although it is hard to keep a competitive job like his in this economy. 🙁  But if anyone can, it will be Nat.  It will be Nat.

Monday, June 11, 2012

Keys and Locks to the Universe

In the past I have written about what I call “keys to the universe,” which is a list of my no-fail, always great things in my life. Not generic, obvious stuff like my sons or love, but specific items or actions that come my way. The loveliness,the blessings of life. On my bike these kinds of things whisper through my head like a breeze.

It might be a good idea for you to consider yours, and remind yourself what really floats your boat.

Sometimes,rarely, I have a bad time while riding and I find myself coming up with “locks to the universe,” or negative things I come across, items,events, people types who rain on my bike ride. On yesterday’s ride, locks and keys competed within me, and I need to write them down:

Locks To The Universe, bike ride 6/10/12
1. Cars that insist on passing me, even when it’s unsafe
2. Cuts to public aid
3. Elbow that won’t heal
4. Mean guy at coffee shop
5. Bitch in car on cell phone
6. Bored of my music
7. Almost fell
8. Unresolved thoughts of Natty

Counteracting Keys To the Universe
1. Shopping cart attendants
2. New York City
3. Pugs
4. Wall of honeysuckle
5. Special Olympics
6. Summer fruit
7. Job coaches
8. Moment of arrival at Cape House

Why not end at eight?

Friday, June 8, 2012

Autism Mommy Swami #8: What Makes A Good Teacher?

Dear Autism Mommy Swami,

What do you look for in staff and teachers/therapists!! And what qualifies as “good” outside qualifications; I would love to know from a parent’s perspective!

–B.A. Good Teacher


Dear B.A. –

Thank you for writing and being so patient waiting for the answer. The Swami never forgets her dear fellow Momrades. And although you are not a Momrade you are a teacher, which puts you on a golden pedestal for us all. Thank you for being a teacher!  Teachers can make our kids’ lives worth living.

So, now that the Swami Blog takes comments, I am hoping many smart parents will write in to you with their opinions, but I will start, of course, with my own. What do I look for in a great teacher? I look for a sense of ownership. Because along with kindness, wisdom, training, humor, loyalty, I want Nat’s teachers and caregivers to feel a sense of ownership of him. I want him to feel like theirs. He is always, always mine, but when I look back at the people who have had the biggest impact on Nat, it is those who felt they had become Nat Experts and they were terribly proud of what they knew. They felt they had a special bond with Nat that no one else had. They had a sense of wisdom about him, a feeling of being able to predict what he’d do, what he liked, disliked, etc.

I remember one of his more recent teachers calling me to tell me about an Incident At School — you all know what I mean, the dreaded phone call from the school where you learn that something bad happened either to your kid or because of your kid. W called to tell me that there actually had not been an incident, but there would have been one a year ago, only now Nat really understood how to get his message across without getting really upset. He told me how Nat had stood still trembling a little while standing in line too long for something unavoidable. He trembled, and that was his only sign of agitation. (Of course, Autism Mommy Swami felt alarm by the word “trembled” and so she marched Nat down to the neurologist right away for a check-up, that yielded no problems!) But anyway, that day at school, Nat did not act out when he could have. He did not bite his arm, or yell, or jump, or scream, hit, or pinch. Or even pace. He let himself sit with — or in this case, stand with — the feelings; he let them pass.  As most of us know, maybe the hardest thing in life is sitting with ones feelings without acting. W was calling me because he was so proud of Nat that he had to brag to someone! This is what I mean by ownership. W felt that he was responsible for Nat in the way that a Master feels towards his Apprentice. There is respect, there are boundaries, there are lessons to teach, but there is also a deep and abiding warm pride in the student’s accomplishments, a feeling almost that they are the teacher’s accomplishments, too.

Ownership is built over time, but it could come very quickly, of course, depending on the teacher’s experience, confidence, and perspicacity. The teacher has to be able to have great insight and empathy; she has to understand the moods, the motivations, the methods of her student. These will make her a good teacher, but having along with those an overarching feeling of ownership: responsibility + love, will make her a great teacher.

Thursday, June 7, 2012

Autism Mommy Swami #7: Homeschool?

Dear Autism Mommy Swami,

Charlie is twelve and going into “sixth” grade next year. I say that with quotes because he is on a second/third grade level. When we found out in fourth grade that he was able to read and spell like a wiz, but was functionally illiterate, not knowing what any of those words meant, I took him out of school and put him and the other kids into Charlie had never been in a special education class, he had supports and an aide (who was doing his work for him) but the school had no such thing as an “autism class.”

After enrolling my three kids in, we set up a program where Charlie would be in second grade and I started language with him from the basics. Charlie was becoming more and more conversational and was listening to stories that I would read. He was able to tell me what the stories were about. He was getting so much from the work that we were doing. We had gotten as far as prefixes when we moved and my 2nd grade daughter launched a campaign to get back into school because she missed kids.

Back they went. They went back because I was exhausted. They went back because I had hopes that here in Pittsburgh, when they offered an autism class, they would reach kids on a level that I couldn’t. Because they are the Experts.

They had an autism program for Charlie, and they promised to keep working on the meaning of every single vocab word with Charlie. For the first time in his life, he was placed in an entirely autistic classroom. Here is what we have found:

1. He’s back to not knowing the meaning of words and now he’s losing pronouns and the ability to use superlatives (better, best). He will not read anymore.He can not follow a story and give the salient points of even a short story.
2. They are NOT working on words with him.
3. He’s been working on the same times tables since we started him in December. He knows them well, but they are not moving on at all.
4. He’s hitting himself and grasping others and squeezing. Not at school, but at home. There is a child in the class who acts out in this manner.
5. He’s developing or mimicking autistic behaviors like mad.
6. He is complaining of headaches or stomach aches to try to get out of school in the morning. He vomits at night sometimes when he thinks that will get him out of school.
7. He says that he being “taken to the principal’s office” daily, the teacher reports that he has never been to see the principal, but this is the threat that they use to get the kids to settle down. He does not know who the principal is or what would happen there, he’s terrified.

I stopped cyberschooling him because with his sister going to school, he stopped working with me and it was a constant fight. I am considering re-enrolling him and just perking up the day a lot more with fun things, possibly changing up the school for one that has better special ed support, although K-12 rocked at special ed. I guess I am just looking for some support. It is hard to homeschool, harder than I ever thought, but after only 6 months at this school, I see reverse progress, especially socially.

In this district they will not integrate him into the classroom because he is so far below grade level. And because he’s very tall. His height is prohibiting him from interacting with his true social peers. He is a third grader at heart. What would you do?



Dear Jan,

Thank you for writing. I think that you’re seeing a poor fit for Charley in the public schools, where they won’t place him with the third graders simply because of chronological age and size. It really pisses off The Swami when others don’t see our guys as the unique people they are. Some may call it “splinter skills,” which I suppose means something like this: a few promising shards break off from the otherwise amorphous static lump. But that’s like seeing not the forest, not even the tree, but only the bark! Clearly Charley’s got it going on; I have known of him for at least six years and I have watched his progress, his blogging, his art. One thing I feel I must ask: Is Charley a third grader at heart as you put it, or is it more that he can benefit best from many aspects of the third grade class and curriculum? In other ways he benefits on his own or with his sibling — and with you. I ask you this because I want to encourage you to keep seeing Charley from a kaleidoscope rather than a microscope, in his full potential.

His school is sadly myopic and guilty of square-peg mashing. This is what Autism Swami sees again and again, institutions and others viewing our guys as static. Why can’t Charley be switched around during the day, benefiting from third grade material when he needs to, and other grades and children for other times? Why herd him into a classroom where he regresses?

You are seeing that your own program at home made a world of difference. You know how hard that is for you to do, though. I’m now thinking of a powerful autism mom I know who came up with her own hybrid program for her guy, partly at home, partly at school. She had her own teachers at home — granted that is likely exorbitant for you, me, and other mortals, but this mom had those kind of superpowers and the purse to match — and other parts of the day her guy benefited from his peers at school.

You have to think about what is right for Charley and for you, because if you’re exhausted you won’t be happy. And if he’s tossed into an inappropriate grade and classroom, he won’t flourish.  Is a combo what you want?

I wonder if you can do this in a few stages, with the goal of a hybrid of home and school. With the ultimate goal being a mixture of both your program and the best of the public school programs (maybe some mainstreaming, and a little one-on-one skill-building in the autism classroom?) First of all, stick to your guns, trust your gut, etc. You know what is right for Charley. You probably even have documented proof. Perhaps take him out and go back to your home program with the knowledge that this is a diagnostic period, not forever. That will help you feel less tired out. During this time, keep records of all of Charley’s success. Perhaps at one point you could get an educational consultant to witness his work.

Second of all, figure out what are your connecting points with the school. What have they done well, what have they done right? Where do you agree with them? This would be your starting point in negotiating with them. The idea would be that you show them that Charley is doing so well in this Charley-specific program, but that he could also benefit from the school expertise and peer groups. Get them on your side if you can by keeping the conversation focused on what Charley has accomplished at home, how wonderful that is. Keep them on your side by showing them the positive experiences he has had on the third grade level. Staying true to your goal, keep it friendly and positive at all times. Learn from Autism Swami’s mistakes when Nat was 10 and she snarled and bit everyone in the room and vanished with him in a puff of black smoke.

As hard as it can be, Autism Swami has learned that it doesn’t have to be all-or-nothing, if we need the help of others. If you can do it alone, do it alone. But if you think there’s a way to benefit from the school part of the day, maybe there’s a way to get that. You’re in the driver’s seat. You’ve done this successfully before, so you know you can do it — although you’ll be very tired. You can be the author of Charley’s education and magnanimously welcome the school people in — or not.  Know your power, feel your power, keep hold of what you know about Charley, and that will keep you on the right track. You’ve taken him so far already, but don’t be afraid to ask for help from the school. Don’t be afraid, period. And you, Jan, know what I mean…



Monday, June 4, 2012

Blog post from 4 years ago

Four years ago, almost to the day, here is what I wrote about Nat and his life. Amazing. How much has changed…

Monday, June 9, 2008


I was folding napkins for dinner. In the middle of smiling at Joyful House Stompies, I stopped dead in my tracks. My brow pulled inward and my throat swelled, and there it was, grief out of nowhere. I watched Nat running back and forth, stimming, talking so loudly in his own language, and I suddenly felt leveled by what was to come. He was going to live at his school. It was really going to happen. The thing that I once feared so much, come to life. I had promised, when he was eleven, that I would never send him away. Anything that happened, our family would deal with it. We would just broaden our arms to hold it up.

So — my arms are tired. I find I cannot carry this much. I am opening them up, and letting him go. Our family is no longer bigger than our challenge, the way families with little kids are in control. We are beyond control. Nat and Max are breaking off, discreet lands of their own. We are bigger, and also smaller than we have ever been.

It is upon us now. I once feared this eventuality so much that I ran from it — for the first three years of Nat’s life. That thing — once the doctor at Mass General said the word, “Autism,” — was kind of a gray, shadowy essence that I could keep at bay. I did not have to see it. I did not know what shape it would take, but I could be optimistic. I could still say, “All bets are off. You never know.”

I was sad tonight because now there is one big thing I do know. He’s leaving.

Sunday, June 3, 2012

I Stim Therefore I Am

Today I rode my bike around 11 miles, shorter than usual, because it was drizzling the entire time. I kept hoping the sun would fight its way through the clouds but it gave up. I didn’t give up, though, because I was enjoying myself. I only cut the ride short because I was getting too wet.

I always enjoy my ride. Always. I don’t always look forward to it, and sometimes it is a true bitch, but there’s something about it. And as I pushed on my thick black pedals, it came to me: it’s the singing. I wear my earbuds — on low, so don’t bug me — and I listen to my favorite stuff. Over and over. You only get like 90 songs or something on a shuffle, so there’s a lot of repeating.

The songs are repeating, the tires go round and round, my routes are nearly always the same. I’m alone. I can’t hold onto thoughts when I ride. If something’s bothering me, it sounds like this: “Why did he, why does he always?” and then I blank out. And then, oh, yeah, “Why does he…?” Sometimes I don’t even remember the problem. I get distracted by nothing and everything: Where did that gorgeous scent come from? Hey, those shrubs are blooming now!  Oops, stick, watch out. Fucking car. Ha ha cute chipmunk. The tires are new and bouncy, with treads like hard muscle, and they sound as loud as a car; sometimes I think a car is right behind me and it’s only me. Especially when the roads are wet: that’s when my tires are the loudest.

The music feels like sweet chocolate in the middle of a good bite of candy. No matter how many times I hear Neil Young sing, “The sky is blue and so is the sea,” my lungs expand with that tender, simple truth. Even when the sky is toadstool grey. And I sing along. I sing all the time on my bike. I whistle, too. I whistle when I’m passing walkers, because I don’t want them to hear me sing. But other than that, I’m singing, and when cars pass me, my mouth is wide open and my lips are bent around lyrics. I probably look kind of silly.

I have to sing when I ride; I just can’t help it. Well, I guess I can help it, of course. It’s not like breathing or something. But the thing is, I don’t want to help it. When others want to ride with me, it is a compromise for me. I love the company of dear ones, but I also have to forgo my music when I’m with them. I miss it during those times. I long for it when I can’t have it, when my battery’s dead and I can’t sing on my ride.

And today while rounding one of my favorite corners, as the wet from the road hit me in the face, so did the realization that I am just like Nat. My singing/riding is my stim. I do it almost uncontrollably because the zen of it is so pleasurable. I’m lost in it, lost to it. I look a bit weird doing it. I try to modify it around others but in the end, I gotta do it.  And so, if I can do it, so can he.


Autism Mommy Swami #6: Give yourself a break

Dear Swami:

Charlie is verbal and has quite good language, but very little social language.

Some background stuff – my husband has been very ill and in hospital for nearly nine months.  One month ago today, he finally had a heart transplant.  He’s been home now for about 10 days, and it’s fabulous to have him home.  Charlie loves Paul and is thrilled to see him every morning.  He says a lot “Daddy home.  Daddy not go hospital”.  He wants to cuddle Paul all the time, he wants Paul to read him stories at bedtime (of course, by stories, I mean look at any book with a picture of a toilet in it, but I digress!).

So that’s all lovely, but… Charlie has become very controlling and manipulative of me.  I know that it’s the impact of such a huge change – a good change, but a huge one  – but it’s very hard to cope with.  He hates it when I help Paul with anything, and the nature of Paul’s surgery means that I will have to continue to help him a lot.  We took him to the shops for an ice-cream this morning.  He refused to hold hands, lay on the ground in the middle of the car-park screaming, demanded an ice-cream, then had another tantrum because he saw the bakery and wanted a cake, then another because he wanted to open the boot of the car, then another because he didn’t want to get into the car, then another because I opened the door of the car…you get the picture.   I am making the mistake of giving in to him because I don’t have the physical or emotional energy to say no and deal with the fall-out right now.

I could deal with it except I know he is perfect for anyone else.

I don’t really know what my question is.  But still, do you have any advice?

Thanks so much,

Charlie’s Mom


Dear Charlie’s Mom,

Thank you for writing and for your compliments. It is okay if you don’t formulate a question; the Swami can sense what you’re getting at. First, let me say that Charlie as you know has experienced a tremendous event in his life: his father’s illness, absence, return, and convalescence. Charlie also has a difficult time processing information due to his autism. And, Charlie is at an age where this sort of pulling away happens. This is true for any kid; once they get beyond 5 the will to independence is strong. It makes sense; as children grow and develop more and more neural pathways and connections in the brain are made through experiences and exposure to life. Awareness emerges. In our guys, maybe it is a more cloudy awareness. Maybe it is overly bright. I don’t know. But I do know that what you are experiencing is probably some natural dismay not only over the difficult behavior itself, but also over this developmental change, some confusion as to whether this is natural (and therefore “okay” on some level) or is it autism (and therefore “not okay”). Do you know what I mean by the latter? We are conditioned to believe that if it’s due to autism, it must be worked on, and if it is due to normal development, it is not mysterious and we can either wait it out or decide among popular parenting strategies what to do.

But we have difficulty looking upon our autistic children as normal. So much of what they do causes us fear because we don’t have a model of what to do.

But it doesn’t have to be that way. Think about what you would do if Charley were not autistic. You would give him some latitude, I think. Because neither of you has the psychological strength just now to work on this. If you are going through a period of extraordinary circumstances — and I would say that a husband’s recuperation from a heart transplant qualifies — you must give yourself a break. You must try and believe that at some point in the future, you guys will feel routines again, you will feel “normal” in many ways. Maybe not normal like my family — as if I’d ever call us that! — but normal in that stuff no longer feels new, sharp, and achy. Humans adjust to the most incredible situations, and I would bet that you already are somewhat easier about all this in your life than you were when Paul first came home.

I know how hard it is that Charley is suddenly being challenging and demanding — and manipulative with you. You are wondering how you should stop it. You are wondering what you should be doing so that he isn’t always like this. Should, should, should. As my wise father would say, “Forget your shoulds.” I would adjust that to say that in times of great stress, ease up on the shoulds. Charley is not going to act like a six year old forever. Even Nat, God bless him, grew out of wanting to pee on houseplants and tear up family photos for attention. Nat learned to sleep through the night at 8 years old. Nat learned not to pinch and scratch people when he was frustrated. You’ve read the book; you know that the bad periods do end.

I know that definitive boundaries and consistency are important overall for children, and often especially those on the Spectrum, but the fact is, relationships are softer than that. Nothing lasts forever. So I think if you can let go of worrying about Charley’s behavior growing rigid and unchangeable, for a little while, you would feel more relaxed. Charley would sense this, and maybe he would relax a little, too. If you can do what I do sometimes and just shrug with a sigh and say, “Ick, I am so flawed. Oh well. We’ll survive.” Keep your focus on how loving Charley is with you, on your husband’s return to health, on your family’s wonderful resilience and know that when you are able, you will be able to deal with Charley’s challenging behavior. You might even find it goes away on its own. The behaviorists are not always right. Sometimes you just gotta be, give in, let go, and trust yourself that it will be okay.



Friday, June 1, 2012

Autism Mommy Swami #5: Get on the bus

Dear Autism Mommy Swami:

B suddenly doesn’t want to ride home on the bus (I already drive him in the AM because I didn’t like how the aide spoke to him). Oops, must go, more detail later. He is happy to go home in the car, just not on the bus.:(

— Bus-Ted

Dear Bus-Ted

I don’t know enough about B to venture any kind of guess, but of course that doesn’t stop Autism Mommy Swami from having an opinion, or at least a little anecdote to share.  First of all, I don’t like sudden changes. Why did things change? Every parent reading this is probably thinking, “Hmmm, what happens on that bus that makes it not work for B?”  Can you ask B in any way, shape, or form to tell you why? Nat has a lot of trouble answering why. If I ask him, “Nat, why are they celebrating?” He’ll answer, “Party.” But if I then ask, “Why are they having a party?” He’d say, “Celebrating.” And around and around.

I would start with the aide. You don’t like the way he/she talked to B. That is not good! You need to talk to her and let her know how you would like people to talk to B. It doesn’t have to be confrontational. When I recently came across a staff person who was too quiet and humorless around Nat, I told him, “I want you to put on your most excited, overly-caffeinated attitude when you’re with Nat! Use as much humor as you can with him!” And I kept it smiley. This guy went on to become one of the best we ever had.

I don’t know how your guy does with accuracy. Maybe you can find your way into the answer by going around the long way. In other words, what else could it be, if it’s not just the rude aide. Maybe chat up the driver. Get a feel for him/her. Is he friendly? Closed? Creepy? Angry? Fun? What feeling do you get when you see him and talk to him. Of course you can’t judge a book by its cover, but the instinctive response you have can inform you a little.

I would also ask the teachers for help on this one. Maybe they can do a social story that explains why we take a bus and why it’s a good thing — it means your a big boy, old enough not to have to ride in Mommy’s car, etc. Do other kids from the class take the bus? Are they nice to him? Is there a way of connecting with the other parents and finding out anything else about the bus experience?

And also, is it possible to get a monitor, for a short period, to check this aide out? Maybe if a trusted adult rides with B just once, he or she will have an idea of what goes on for B that makes him not want to ride.

Then again, it could just be that he wants him Mom the way he has her for the other direction. If you want to tough it out for a few weeks — as long as you feel okay about the aide, the driver and the other kids — maybe decide on a time period that you will make him do it. You’d then figure that if at the end of those two weeks he still doesn’t want to do it, you’ll drive him. You can also try incentives like treats for each day he rides.

I guess the thing for me is to be sure you feel confident about the aide, the driver, the other kids, and the ride before you take any other action.