Susan Senator

Dear Autism Swami Mommy,

First of all, I have to thank you for your blog and your book, Making Peace with Autism.  I am about a year out from my son’s diagnosis and I just getting to the point where I can read about autism without feeling anxious about my son’s future.
Now, onto our current issue.
My son picks his nose and eats the contents.  In public.  Now I realize he’s just three and a half and there are plenty of NT toddlers out there with similar habits.  But I worry that unlike his peers, he won’t catch onto the fact it’s not appropriate in public or “outgrow” it.  He sometimes is accepting when I gently take his hands and tell him “no.”  Sometimes he even accepts my request that he excuse himself and do it in private.  (Even if “in private” means going into his bedroom and turning his back to me without closing the door).  But lately, he’s been more and more upset when I try to (gently) discourage.  He doesn’t seem to do it for stress relief, mostly when he’s tired and bored.  
We also added a new baby into the mix in May, so that adds to the chaos, confusion and stress around here.
I try to deal with most of my son’s eccentricities with humor and grace, but this one worries me a bit.
It sounds like you had some success getting Nat to modulate some of his behaviors in public.
Any advice?

Thanks, from
Pick a Winner!

Dear Pick,

Your questions made the Swami smile on a dreary day, so thanks for that. But your issues here are definitely not a laughing matter. We all worry about our kids learning socially acceptable behavior, and when they’re very young, it’s scary not knowing if this will ever go away. I remember so many times when Nat would come up with new problem activities (notice I did not say “behaviors.” I think that I am going to avoid that word from now on: it’s so reductive. How can a human being’s activities be consigned to the petty category of “behaviors?” I do say “behavior,” because that’s different. Behavior is simply the code we all must understand, the way one must act in public. But when you put an S on it, behavior becomes behaviors, which is patronizing, analytical, distant, and clinical. What we’re really talking about are activities our child engages in that we wish he’d stop. So let’s just say that.) Anyway, when Nat would start doing things like carrying his BM from one toilet to another, or peeing in potted plants (did he think they were “potty plants,” perhaps?) or ripping photos and laughing, I would feel helpless and discouraged. I would wring my hands to the Universe, crying, “Now this?? Why, Lord?”

You panic. And with autism, there’s a feeling of powerlessness, because it can seem like it is Happening, from Autism On High, and there’s just no appeasing It.

But that’s not true, and you have to believe me in this. For autistic kids are just kids that are sometimes harder to figure out, harder to communicate with. But still they learn.  Autistic kids go through phases like everyone else. Growth can seem different sometimes, though, because it can really feel like your kid has lost skills out of the blue. Or picked up habits, just like that.

Of course it is true that some forms of autism are regressive. I don’t know about that in clinical terms, so I can’t speak about that. But what I do know is that all kids learn, some just get there slower than others. Some learn it and forget it again. I know I do! I have to relearn things sometimes. There are times in our lives when we are more ready than others. The same is true for our kids. I know that Nat suddenly could turn over in his crib. Suddenly he could crawl, when an hour ago he could not. Suddenly he let go of my hands and did his chimpy walk on his own. Suddenly he could talk, read.  One year he hated sports, the next year he became a gymnast. He used to ignore other children. Now he would rather be with peers than anyone else.

Nat does not represent everyone in the autism population, of course. But I know other autistic young adults and the same is true for them. No, they are not cured. They did not de-auticize. They still have some bad habits, perhaps unpleasant activities (like you and me). But they have learned a lot about how to behave in this world.

All of this I say because your guy is 3. So there is a lot of time for him to quit picking his nose. I know you are worried. And that is why you are observing this problem with so much energy. That’s good! That is how we zero in on cause, effect, and what works. You have already had the experience of showing him how to stop, and he has even sometimes excused himself to go do it in private. That is so great! There you have it: a precedent upon which to build hope and real change. If you have already seen that he responds to a gentle “no,” then you will see it again. He will do it again. Because he knows how.

Now, onto some practical suggestions:

1) Maybe take out a tissue and slip that into his hand and say, “Yay!” when he uses it, instead of picking and eating.

2) Or make a social story about what to do with a full nose:

A) Nose is stuffy!

B) Go get a tissue.

C) Blow nose junk into tissue.

D) Wipe nose clean.

E) Throw away tissue.

F) Clean hands.

G) GREAT JOB!!

Draw it. Or cut out pics from magazines to illustrate. Or use the Meyer-Johnson stick figs. Or sing it. Act it out. Be funny. Whatever he’ll understand.

3) If you find he’s doing it for attention, then probably the thing to do is give him attention. BUT, not then. For other things. Give it at other, positive times in the day. Look for praiseworthy moments, like, when he gets a tissue. Make that a very big, happy deal. Give very little attention, on the other hand, when he is picking.

4) Stay patient and relaxed. But also, remember that just about every human being on earth picks his/her nose. Kids and adults. Have you ever looked at the driver in the car next to you when stopped at a light? We shouldn’t, but we do. It’s always better to remember to use tissues, but it’s never a felony if we don’t.

And truly, the more skilled he is with a tissue and going into the privacy of his room, the better things will go for him when he hits puberty…

Love,

Swami

Dear Swami:

My son’s mother and I do not think he’s getting much out of his summer camp, which is supposedly tailored towards special needs children, it’s not worth the three grand for ten weeks.

What we’re thinking about for next summer is potentially hiring a one on one aide to watch him in one of our houses for 6-8 hours a day. We have no clue what the going rate is, or even how to go about doing this.

I’m guessing you have some experience in hiring aides, any advice or tips on where to go?
-Guy Rude

Dear Guy,

First of all, yes, I have advice. The Swami wrote an article about this in 1999 for Exceptional Parent Magazine.

You have asked for my advice, not my opinion. But I do have an opinion, but rather than express it outright and tell you what to do, I will ask you pointed questions so that you may decide for yourself.  What do you imagine your little guy will do with those long 6-8 hour days at home(s)? If you believe that his days will be more fulfilling at home, then pursue this idea. No matter what it costs, if a camp is mediocre, it is not worth it. And yet, is it feasible and worthwhile for Little Guy to be with only one person of uncertain training every day for ten weeks? Even if you were to plan a curriculum of 20-minute tasks and assignments and outings, 6-8 hours is a long day for both of them. There may likely be long moments of not much going on.

There are, however, midpoints that are not as risky as one or the other.  Perhaps you can send him to camp with the aide you hire, for the purposes of having the aide act as a liaison who can adapt the camp curriculum.  It seems to me that if you can show that Little Guy is not getting much out of the special needs camp, your school system should be getting involved. He should have an Extended School Year, and sometimes that can come in the form of an aide in a camp. From what I know of Little Guy, he should be getting ESY to prevent regression. If he is already getting this, then you must have your team reevaluate the program’s efficacy, and perhaps have them add an aide or find a different program.

Another midpoint is to have him do a half day of the camp (perhaps getting the tuition prorated for a half day, citing ADA accommodation as the reason; tell them Little Guy can’t attend a whole day due to his extensive needs). This way he gets his socialization/communication/community/physical goals met in the camp and then the other half of the day the aide can work on one-to-one communication/academics/pragmatics/community/computer/you name it.

For many years, long ago, the Swami hired tutors for Nat’s after school and vacation times, the purpose of which was to keep him engaged as much as possible. Our feeling was that if someone were always “in his face,” making sure he always responded in some way, it would keep him in the habit of attending to others. So the first thing we did was hire the person, after coming up with a job description: (hours desired, pay rate, qualities of employee — humor, flexibility, ability to think on her/his feet, dependability, punctuality.)

How did we find the person? 1) We advertised at all nearby colleges and also let teachers know that we were offering an opportunity for extra cash. 2) I simply asked aides and tutors what they expected to earn. 3) I called all references. 4) I set up times for the person to come and interact with Nat so that I could see if I liked her/his style and the relationship with Nat. 5) If I hired her/him the first sessions would take place with me in the room or nearby. 6) I would develop a curriculum: I set up a notebook divided into separate goal areas. In each section would be suggestions of how to meet those goals. For example, in academics the suggestions would be: trace alphabet letters in coffee grounds (sensory satisfaction); fill in the blanks of sentences; do Spell-A-Puzzle to practice reading… 7) I would provide space in the notebook for the tutor’s notes on activities and progress, what worked and what did not.

I would try to keep my expectations low at first because you really don’t know how Little Guy will take to this format nor do you know how the aide will turn out. Do not be afraid to model correct interactions for her/him and do not be afraid to fire them. If you have any kind of bad feeling, don’t hire them.  Many people can be worked with to give them better teaching approaches but no one can be taught compassion.

Good luck, my friend.

Love,

Swami

Dear Swami,

Autism dad, me, B, has consulted with attorneys and insurance pros for help with suggestions for how to set up a house, the tax and liability issues, for my son with autism. They really haven’t come up with anything. Any advice before I impulsively buy a house and post flyers for staffing it?

Dear B,

I take it that you are not coming to the Swami for matters fiduciary, financial, or otherwise legal & final. The Swami only knows about issues intuitive, soul searches, and heart murmurs. While I can’t advise you about whether to buy a house for your son, set up a special needs trust, get guardianship, I can plumb the question of how to do what you need to do.

I have lived through a lot and gotten to know many people along the way, so many parents who, like you and me, struggle with the right answer. The sooner we all realize that there are few single solutions, the better off we are. Unfortunately, parenting is not a science, nor an art, but a big sloppy cooking session, with only a few crappy implements picked up at other people’s yard sales. Sometimes the meal you make is great; sometimes it is godawful, but you just keep cooking because you gotta eat, and you must nourish others.  But don’t expect rave reviews.

Anyway, it sounds like you really want to buy a home for your son, because you ask, what is to stop me from impulsively buying a house…? Impulse is an important feeling. Impulse is Intuition’s embarrassing sibling.  But what you can learn from impulse is that there is something you want desperately. You want your son’s future to be secured in every way it can be. And because none of us knows what services and supports — if any — will be available in our children’s futures, we all want to do whatever we can given that reality.

I don’t know you or your financial situation, but I do know that you kind of want to provide a tangible shelter for your son. I know two other families who had the means to do this, and even though it came with many headaches, they do not yet regret it.  The Swami herself wishes she could buy Nat his own place, to share with friends and staff, but that is not possible at this time.

For many of us, the more we can control, the better. If you know this about yourself, why not pursue what it means? You clearly have attorneys and financial advisers and special needs experts to steer you through the legal and financial minutiae. I can’t do that. But I think what you want from me is validation as the dad, permission to do what you think is best.  In the end, the parent makes his best decision, based on honest research and soul search, based on understanding the child himself and what he wants and needs, and what he, the parent, is capable of pursuing.

Don’t do anything that would jeopardize your son’s eligibility, but do everything that you believe will help him survive and thrive.

Love,

Swami

Dear Swami,

We have a 13 year old son.  He is basically moderate to higher functioning, for whatever that means (lol).  Puberty has hit this poor guy in a big way and we are having issues with his time for his uh, well, masturbation sessions, or PT (private time) as we like to call it around the house and others who have no idea what we’re alluding to.  He had a few episodes at school being caught in the bathroom, and now he is in summer camp and had his first and I fear not his last episode today.

 We have tried to explain to him that he can only do it in our house in specified areas and written social stories as well.  Although he seems to understand that there are limitations, it’s so difficult not having the where with all about how taboo it is, and how disturbing it is to others.  I feel bad for him as he’s asked me for PT time in the tub (it’s main area to do it) and let’s just say it’s evident he needs that time, and this can’t be helped.  My hubby tries to help too but nothing seems to help him get past the urge if you will.

All the other mom’s I’ve asked about this either say their son doesn’t do it, or they aren’t aware they are doing it.  I guess I am the only one with a kid with Autism that masturbates in public places!!!!…. I don’t think so.  It’s a huge problem for us right now.

Any info or resources you could offer would be wonderful.  He’s is our only child, so I don’t have much experience in this whole arena if you will.  I almost lost it when I saw his first underarm hair 3 years ago, so you can imagine how it is dealing with this!  

Thanks so much
B

Dear B,

Ah, yes, the M word, the Swami knows all about this as do all of us because masturbation is as normal and human as breathing. Everybody’s doing it, or wants to, or is thinking about it, or has just finished, or will get there in time. None of the moms talk about it because they are struggling with it, too. This the Swami promises you. It’s just that none of us really knows how to talk about it and there are not really great resources for us, either. (Although I have to say that Dr. Peter Gerhardt is the one I’d go to. I know him, he’s a delightful guy, and is very direct and can-do. He has written and lectured on sexuality and ASD, and I know there is some literature out there that he’s put together.)

Clearly you are very aware of the challenge here, and the gravity of the problem. I commend you for already having helped him find a good place (the tub) and a name for it.

That being said, it is best if you can approach this milestone as calmly as possible. Your boy will pick up on your stress as it is, and so the more at peace with this phase you can be, the better. Problems become nightmares when we try to deny or suppress them, when we allow fear to consume us and taint the act with shame. The more you can de-mystify this for him, with clarity and calmness, the better it will go for him.

When my Nat was about 13, one of us caught him “at it.” I remember actually feeling sad, but in a kind of normal way, because I realized that he was no longer a little boy, that he truly was growing up into being a man. I think I must have said something about privacy, closing doors, etc. And Nat, God bless him, began calling it “making privacy.”

So take a moment and feel the triumphs you guys have achieved so far, and know that the rest will come. When a problem is fresh and new we think it will last forever; it rarely does.

The public place aspect is, of course, the scariest and most serious part. Have you asked the school for help, as tough as that may be? What do your specialists say?  When I need to bring it up to various staff people in Nat’s life, I try to be as clear as possible while at the same time making it clear that I know none of us wants to talk about this, but we must. I maintain the attitude that this is a person’s human right. Okay, so what can you do? For starters, I’d tell him that there are only two places he can do this: in his bathroom with the door closed, and in his bedroom with the door closed. That’s it. Nowhere else. A public bathroom is just too risky, too public.

Your guy is likely a concrete thinker, so the clearer and more absolute your rules and messages are, the better. Not punishing, but clear and firm. What are the rules that he needs to understand?

First of all, this is a normal act, and it is perfectly okay that he does it. You can tell him that, as long as you then also tell him that everyone has to abide by certain private time rules:

1. Where: only his bathroom or bedroom with door closed.

2. When: you decide and let him know, but base it on when he seems to need it most. We all have to be aware of time and schedules, so this is not cruel. If you notice him touching himself in the tub, you can say, “Do you need some private time?” and let him tell you. This way you are also calling attention to it and making him aware that what he is doing needs to be attended to (by him), that it is important. In terms of during summer camp, you should probably have a talk with the staff that this is an issue you are all working on, and get agreement on how to handle it so that you are consistent across the board. They can tell him, “Private time at home,” because I just think that using public bathrooms is too risky. And you don’t want the staff to have to be around during, or anything. Only the innermost circle of trusted people (doctor and you). They can try to distract him, always provide other desirable choices, even help him realize that it is difficult because we all do have the urges, but it is okay to do something else until later. Everyone has to learn this anyway, not just him!

3. How: Alone, only by himself, with himself. No one else may touch his private parts except his innermost circle of trusted people — doctor or parent/guardian and only then with an explanation why and asking permission.

The only other issue is how to help him complete properly. Depending on his language level — and it sounds like he has a lot of language — explain that he is responsible for the clean up. We had to tell Nat many many times over the years what was appropriate in terms of clean up. And finally after about 7 years, he got it. But we had to be firm, clear, consistent, and calm so that he could understand what was expected of him without feeling any shame around this very human act.

This is tough, but not impossible.

Love,

Swami

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!
Jewels

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.

Love,

Swami

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.
Lori

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.

Love,

Swami

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 can.not.do.this.one.more.minute. 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.

Love,
Swami

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.

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 K-12.com. 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 K-12.com, 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?

Jan

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…

Love,

Swami

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.

Love,

Swami