Susan's Blog

Wednesday, October 9, 2013

Autism Mommy Swami Q & A: Age-Appropriate?

Dear Swami,

My son W will be turning 13 in January. He has limited communication skills and in many ways is like a younger child.  He probably falls in the moderate to severe range on the spectrum. I try to encourage his independence. He does chores around the house. It has been recommended to me that I steer him away from some of the things he likes that are for younger kids. For instance, he is perfectly happy to sit and watch Sesame Street. He will go on You tube and pull up Teletubbies and Caillou.

We recently attended a birthday party for a very high functioning 11 year old girl. She is obsessed with animals and bugs. It was a reptile themed party. There was a demonstration where they pulled all these reptiles out of a box and the kids got to hold them and learn about them. It lasted an hour and W did great. He attended, he held everything. He didn’t react much but he participated. For the rest of the party he sat on the floor and played with the girls 2 year old siblings’ toys. I’m not sure what else he could do. He cannot have a conversation and is emotionally a lot younger than the other kids. I don’t think he has any / many interests to share anyway. Staying at the party allowed my 10 year old daughter and I  to socialize.

I half think I should just leave him alone. I’m not sure what to replace these shows or toys with. It’s what he likes. On the other hand, will he be 20 and playing with jack in the box? What does Swami think?

Thank you for this forum. D

 

Dear D,

The Swami understands and recognizes the pain of not knowing how much to try to change and how much to accept/let be in our kids. I struggled so much with this when my Nat was younger. I still struggle with the question: “Is it okay to let him sit around or pace half the day on weekends he’s home, or should I be engaging him more with constructive (read: neurotypical) activities?”

You can probably see where I’m going here. I paid special attention to your statement: “I half think I should just leave him alone…” This is one instinct to consider and give credence to. Our autistic kids are atypical; they are wired differently. They like different things than neurotypical people. That is a fact and it does not mean their preferred activities are wrong. Even if common thinking is that the particular activity is not age appropriate, I have to ask, “How is such a judgement decided? Who died and made Mattel or Lego or television programming boss?” Do psychologists get together and tell television shows and toddler toy manufacturers what is what? Why do they put those stupid depressing ages on the box? Why do we pay attention to it? You like what you like. To tell you the truth, the Swami still likes to dress up in gowns and high heels, only now, they are my own and not my grandmother’s. My “typical” 21 year old still likes Pokemon and thinks Spongebob is awesome.

If, indeed, W at 20 still plays with a jack-in-the-box, where is the tragedy?

On the other hand, if you can find ways to expand his world, and give him more activities to enjoy, go for it! I think it’s great that he enjoyed the birthday party, as well as the 2 year old sibling. Friends, no matter what age, are friends. People are people. We love what we love, who we love. As long as we love, we are doing great. That goes for W, your wonderful unusual boy. Swami says: enjoy him and learn from him all about a different kind of mind!

Love,

Swami

 

Friday, March 22, 2013

Autism Mommy Swami: Braces

Dear Swami,

What advice do you have regarding getting braces put on?  

My son is almost 13, has minimal language and will not understand why his teeth will have these “things” on them. He doesn’t have sufficient receptive language for him to understand. In addition, how can we teach him to keep his mouth open long enough for braces to be applied to his teeth?  And finally, the braces will
hurt when first put in. We won’t know where exactly it hurts in order to put on the wax the orthodontists give the children to coat their mouth when there is a problem. My son will not be able to exactly pinpoint where he has discomfort.

The only positive aspect of this process is that my son has a twin (typical)  sister who just had her braces put on.

We are very worried about how upset he will be by this whole thing. But getting the braces put on seems line an undaunting process.

Can you give us any advice?

Thank you so much.

–Braced for Trouble

 

Dear Braced,

Thank you for bringing up such an important question. As you know, The Swami’s own darling son Nat got braces put on when he was about 12 or 13. We were able to bring this about because Nat happens to be very relaxed at the dentist to begin with. I don’t know how or why we did this, but we started him going before we knew about his autism definitively. So the whole experience for Nat was very “normative,” as our psychiatrist likes to say. I think he means “normal.” I guess it is like introducing less tasty, adult foods to babies while they’ll still try anything. That’s the theory, anyway. We did that for Ben. We put all of our dinner foods into a Mueli grinder and fed it to him mashed up. Oh, he ate anything we gave him alright.

And then suddenly, he did not. And he is still my PICKIEST EATER YET. So, there you have it. Nothing.

You already know that what works for one family may not work for another. You feel that your son will not sit through getting these things on his teeth, let alone keeping his mouth open for so long.

So, I think you have to dig down into your instinctual knowledge and grab onto clues for yourself. Here is the biggest clue you have offered: his twin sister just had them put on. Is your guy visual? The first thing I would try is writing your son a Crisis Story. Known these days as Social Stories, (but I created my own version when Nat was 3, before I knew about Carol Gray and her copyright), these are simple stories that explain, step-by-step with photos, exactly what your child should expect from this upcoming “crisis.” Unlike Social Stories, however, Crisis Stories contain real photos from the child’s life to accompany the text. While the Swami is aware that symbolic or iconic representative drawings do work for children on the Spectrum as a quick shorthand for grasping basic meanings, they do have their limits. For someone who is literal and has difficulty generalizing — like Nat — you need actual photos from the child’s immediate life. Then he sees it and connects it without a huge leap.

So what do you do first?  Determine just how important the braces are. You clearly want to do something for your son’s teeth, and the Swami understands. We parents want our children to have every advantage they can and straight teeth are important socially as well as in terms of health. But, temper this desire with compromise. Maybe you only have to do a little bit to correct the worst of the problem. Maybe you don’t have to get his teeth perfect. That’s what we went for with Nat: presentable, not perfect. You just can’t have everything, my dear Braced. So in this life, you make choices.

Next. Make sure that your practitioner is with it. Go to the dentist, sit down with the staff who will be working on your son and tell them his issues. Give them suggestions for how to deal with him. Be very clear that if they are not with the program you will take your business elsewhere. We did that. We made absolutely sure that our orthodontist knew what she was getting into and what we would and would not tolerate from her (the orthodontist). Yes, you are the client, so you set the tone of this relationship. This goes for any professional you work with. If they don’t get it, move the F on. Life is too short to waste on stupid insensitive “professionals,” and our children are too precious for that kind of nonsense.

In fact, let me step outside of this particular narrative for one moment and say: NEVER LET ANY PROFESSIONAL — ANYONE — MAKE YOU FEEL BAD ABOUT YOUR KID.

 Third, create the Crisis Story.

  • 1) You take pictures of your daughter’s braces — within her face, to keep braces connected to familiarity.
  • 2) You take pictures at the dentist’s office, of the person who will be working on your son and all the equipment.
  • 3) You take pictures of your son’s face, teeth, mouth.
  • 4) Try to get a fake picture, of your son already in the dentist’s chair! Stage it beforehand!!
  • 5) Write up your story with simple text that keeps the info clear and brief:
  • -Tell Johnny what is going to happen to him. (picture)
  • -Tell him that this already happened to his sister (picture). Show him his familiar dentist’s office (pictures of chair, tools, dentist).
  • -Then include the picture of him in the chair, showing him that this is what will be happening to him.
  • -Show him the inside of his sister’s mouth. Talk about keeping the mouth open (picture) for a LONG time.
  • -Talk about how he can have breaks, and treats (pictures) AFTER he does what is necessary.
  • -Talk about how it will end, and how proud he will be.

As for the wax, you might be able to ask his sister the most likely pain points. You might even be able to run your own finger inside his mouth and feel for sharp points to cover. Also give him pain reliever as long as the dentist allows it. But also know that one of the worst things about being a parent is that you cannot always take away your child’s pain.  You can prepare him in every way possible, though, and that is a great gift to him.  Good luck!

Love,

Swami

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Saturday, August 18, 2012

Autism Mommy Swami: Nose Picking

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

Friday, July 20, 2012

Autism Mommy Swami #14: Hiring a Tutor

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

Thursday, July 12, 2012

Autism Mommy Swami #13: A Home For My Son

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

 

 

Monday, July 2, 2012

Autism Mommy Swami #12: Masturbation

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

 

 

Monday, June 25, 2012

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!
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

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.
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

 

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 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

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 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

Sunday, June 3, 2012

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.

Love,

Swami

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.

Love,

Swami

 

Monday, May 21, 2012

Autism Mommy Swami #4: To stim or not to stim

Dear Swami….

I’m like the wind blows, back and forth.
Stimming… ahhhh!
I listen to some and they say, let the child stim.  It’s who they are, they self sooth, telling them not to is the same as saying there is something wrong with them, and don’t be different.
Some say, if they’re stimming, they can’t be paying attention to school work, peers, things going on around them.  Allowing them to stim will keep them from succeeding.
The school allows full stim.
His Autism Specialist says control it.
What do you think?

–Windy

Dear Windy,

First let me say how entertaining I found your email format to be!

Second, let me say how sad it makes me that there is this angst in the world about stimming. I know from deep experience how Nat’s stimming has made me feel over the years, how uncomfortable. But my deeper embarrassment is that I care at all. Nat’s stimming is necessary to his comfort and more; I know that, but being a silly flawed human, I still am not at the point where I feel comfortable when he stims in public. It is not that I am ashamed of him, not at all. It is that it puts me back in that place of loss, where I once realized that Nat was not going to have the life I had dreamed for him. He was not going to have a mainstream, red white and blue kind of life that I could provide and wanted to provide. Of course none of my sons has turned out to be mainstream, steak-loving short-haired males, but neither is their father, and neither is their mother, so to speak. But what my other sons are is not the point here. It feels like they had a choice to be alternative and different; Nat did not. His autism made him different from the start, which is not bad in and of itself, but it does make life harder. Mommies usually do not want their children’s lives to be hard. Our duty is to give them life and to help them survive and carry on. It is genetically programmed into us.

So the stimming brings me right back to the point of shock, where I see how Nat appears to others, and they are so wrong about him, in their silent ridicule or misunderstanding of him. They are so wrong! And yet I can’t do anything about it! I can’t realistically stop them in the street and say, “Wait, no! You don’t know him at all! You think this self-talk is wacky but it means something! He’s not stupid, he’s not someone you can just scrape off your shoe! MY CHILD! Really? You’re going to laugh at MY CHILD???  But he’s so awesome!  Wait, look, see how he can smile even if the world is confusing to him? See how he learned to navigate the outdoors safely, despite so many strong impulses?  Look, damn you! Look at him. See his deep and real Personhood (you fucking idiot).

Those are the feelings I have when Nat stims in public and they are not easy feelings to have. I would rather not have them. But do I say with painfully clenched teeth: “STOP THAT, NAT!” No, I don’t. The most I have done is to add a new layer of skill to his social repertoire:  the ability to be quieter, and/or choose a different time and place for it. Or choose a more socially acceptable stim. In Nat’s case, he can do “quieter silly talk,” (yes, that is what we call it, from a long time ago, and that is how he knows it, and it is too hard at this point to change over to a kinder terminology.) or do silly talk after the supermarket.

Sometimes, though, happily, I just don’t give a shit, and I feel just totally in love with him, and I want to stim right along with him. IN YOUR FACE, WHOLE FOODS UPTIGHT BITCHES!

Sorry. The Swami gets very heated about perceived attacks on her babies. You understand.

On the question of whether allowing them to stim gets in the way of their understanding school lessons, and what goes on around them… well, yes, it probably can do that sometimes. But sometimes it is the other way around. They aren’t understanding what is going on around them and so they stim! If I didn’t understand what was being said all around me, the way I felt in London, for example, I space out, and I focus on the “wrong” things (my shoes, my hair, which I smooth down, fluff out, smooth down, flatten out… sounds a little stimmy, doesn’t it?). I don’t know, but does doing that to myself perhaps reassure me that I’m still here, even though I am so cut off from everyone else around me?

I think the best solution is taking it a stim at a time. When it’s no big deal, it’s no big deal, let it be. When it is a big deal to be more still, you can help your child understand time-and-a-place-for-everything, and that is good for his survival in this bug-eyed world, the demanding schoolroom or workplace. But it has to be done humanely, acknowledging the importance of stimming, something like this, “Oh, sweetie, I know you love to flap, but in this room flapping has to be quieter. You can flap when the bell rings and class is over.” Or “You can flap in ten minutes, let’s set this timer.” Or, as in Nat’s case, we do tell him not to suck his thumb in public, and so he then taps his thumb against his lip, and seems to enjoy that, too.  I think it is a sign of caring to help your child figure out acceptable and subtle relief.

I never believe there are black and white answers to these kinds of things.  We’re trying to teach our autistic children to discern gray areas and be comfortable with them, because life is about the gray areas. Stimming is neither good nor bad, it just is, but it can be softened without shaming, just to help one fit in a little better.

Love,

Swami

Wednesday, May 16, 2012

Autism Mommy Swami #3: Aggression?

Dear Autism Mommy Swami,

Do you think Nat’s aggression/anxiety was worse during puberty? Jeremy just turned 13, and although the aggression has subsided, the anxiety and rigidities seem to have escalated. I’m hoping hormones may be playing a part in this, and that later on (sooner than later I hope) things will level out. I think you are going to be very busy with this new endeavor…bless you, Swami!
-Cookie

Dear Cookie,

Thank you for writing. The way I’m going to answer this one is to tell you all the factors that I believe went into Nat’s behavior when he was aggressive. I do this so that you can think in terms of possible reasons for Jeremy’s aggression, to give you a context to work from. You don’t need to compare your situation to mine; just know that you can use your own observation and empathy skills to try to figure out what’s going on. I say empathy so that it will be easier to remember to stay on his side. My biggest mistake was becoming afraid of Nat and being apart from him. When a child is feeling bad enough to hurt others, it is so important to stay with him. I think of this as “being the adult.” It is very hard, because you’re scared: for him and for others (and you). But try to feel for him, and you will stay connected. Connection is definitely a way out of troubled times.

Nat started to become overly energetic when he was 10, shortly after beginning Paxil. This period also coincided with his starting in a classroom that was not appropriate for him. The teacher was a skittish person and the speech and OT people took Nat’s behavior personally. This was the only experience in Nat’s entire school life where he was disliked by staff. And boy, did he know it. Even now rage simmers angrily inside of me when I remember them. I mention this because we parents always try to pinpoint when difficulties began and why, but what do we really know? My gut tells me that Nat’s synapses were becoming too slippery on the Paxil, making him almost a little manic and definitely uninhibited. But combine that with a tough winter and Blue Meanie teachers… why wouldn’t someone start hitting out at them?

But why did he also hit me? I still don’t know. This period lasted on and off for a year or two, until Nat was settled in a new school program where he stayed until he turned 22. During those years under the care of a wonderful humane doctor we started him on a tiny dose of Resperidone to see if it would calm him a little — not sedate, but calm him, give him a split second of space before responding impulsively. That was the theory. The Resperidone did help somewhat, but also I’m sure we were relieved to have something to try and so we calmed down, too, and that was good for Nat to experience. Can a parent fake calm? I would advise it.

We also started Nat in Special Olympics gymnastics at this time, and this was such a positive experience for him that he really started to feel good again. His coach was lovely and the other kids on the team were his age and some became friends of his to this day.

Winter gave way to spring, and this also helped.

Hormones make anyone crazy, be they adolescent boys or middle-age perimenopausal moms. Indeed, people in general tend to straighten out once their bodies do.

Here is another thing that helped, and you must read this without judging the Swami. Nat’s school had an idea which was to use a time-out room for 1 minute to help him decompress when he became aggressive. This way they could avoid restraining him. It was a small room with a small window. I cried when I signed the consent, but I felt that we should try it and see how he responded.The time-outs were fine for him; he could be alone and away from whatever/whoever had set him off. It served as a cool gust of air in a hot room (I think).

Time-out rooms are not legal these days, but I think that Nat benefited from the quiet separate space for those brief intervals. They were not used as punishments; they were used as a distancing device. I think that’s okay. I think it did him good to experience that he could be calm rather than aggressive.  Would I do it this way, knowing what I do now? Probably not. Now that I know how much he wants to communicate (but on his terms), I would have worked harder trying to teach him words and typing emails.

As Nat grew, so did his language, and I believe that was the element that had the biggest effect on his peace of mind. He could identify what was bothering and he could see that telling us about it had a positive result. This built trust, which is what may also be at the heart of some of the aggression. I think that when Nat would get so worked up that he would hit someone, it was driven by fear of not being validated. I think he felt alone, needing something but not knowing how to tell us. I think this enraged him, at us and at himself.

What I’m trying to tell you, Cookie, is that yes, I think Jeremy will grow out of it the way we all do, and that also there may be some concrete things to try like Special O, maybe meds (under a good doctor’s care), communication skill-building. I think you should trust your gut and your kid, that it definitely will get better and that you both will have learned a lot at the end of this phase.

Love,

Swami

Sunday, May 13, 2012

Autism Mommy Swami #2: How will I tell her?

Dear Autism Mommy Swami,

I have a question I was wondering if you could help me with. How long do I let my daughter live in her own world that involves driving, babysitting, getting married, having children, etc.? She is 11 years old, moderately cognitively impaired, high functioning autism, severe auditory processing disorder and understands about only 50% of very short familiar sentences. She has severe short term memory loss, seizures and a number of other medical issues. Language is lost on her. She tries, bless her heart, but she doesn’t understand what she is hearing most of the time or even what she is saying. She mimicks what she hears other peopele say. In this case, she hears her older sister talking about all these dreams, so of course these must be her dreams too. I hope that one day she will be able to be somewhat independant like your Nat, but I really wonder if that will ever happen because she cannot take care of even the basics without reminding or/and help. I worry constantly of her being taken advantage of in so many ways. I have only had her for nearly 3 years as I adopted her and her sister from foster care. She is beginning to come to a knowledge of some sort that she is different from other kids. But I am wondering how long to let her have these dreams that are not possible. She will never drive, or babysit, or have children…at least not unless she is taken advantage of or has sex and that is the outcome, but she will never be able to care for a child. She will always be a child herself mentally. When do I ease her into these truths or do I allow her to live in her dreams and face these things headlong as they come? I hate it when she says something about a variety of things I know she will never be capable of doing because it feels like I am lying to her to go along with whatever her chatter is in that area. It is weird because she has such a hard time communicating her needs and wants, but she can mimick these things so well and believes them. Does that make sense? Just wondering if you have any insight. Thanks in advance. –Gabriella

 

Dear Gabriella-

I can see how painful this is for you. I understand your questions. I also relate to how scared you are for her, and how black & white you are seeing things. So let me start there. She’s only 11. You would not believe how difficult things were with Nat at 11! So much growth occurred in his later teens and early 20′s! Although I don’t know your daughter, I do know that our delayed kids can and do continue growing after puberty (growing intellectually and socially, that is). It might be because they have experienced more of the world, and they understand it better, and so they are more in command of themselves and their communication. So you should try not to think in terms of “she will never…” because you don’t know. For instance, even if she will “never” babysit, it may be possible for her to go with some peer and help babysit. It might be possible for her to just be in the room with you and a relative’s baby, and let her do a few helpful things that you can call “babysitting.” It is not a lie; it is a creative form of getting her what she needs. As far as driving — well, that in itself is not such a big deal. Plenty of people don’t or can’t drive. That is something she can deal with when she’s older; you don’t have to address it now. Let her talk, let her fantasize, like any other 11 year old. Some of them think they’ll be ballerinas (I did, but I was a plump kid, so that was never to be!)!!! And this applies to having children… remember, a lot of little girls have their dreams, and who knows what true adulthood will bring? Keep in mind she’s just a little girl. She has limitations but she does not need to know about them in this way. If you were asking me how to tell her she can’t cross the street by herself, I would say tell her now! Help her now! But something like daydreams — let that be for now. Let her enjoy her thoughts, her confidence in herself. Her confidence and joy in life will probably actually help her succeed more later on. Attitude helps a lot. My mom thought I was crazy to want to be a writer… it only encouraged me more! Our kids always surprise us, please believe me. Finally, I want to address her mimicking ability: also a good thing, a skill! That may help her someday in articulation, in being understood, and in turn understanding people!

Also, I still have to repeat that you never know how she will grow. Even if she needs assistance in dressing or something, that doesn’t mean she won’t be independent in other ways. Do you think that Nat is really so independent? It’s all in the way I look at him. I feel proud over every small accomplishment, like when he can make himself understood at Starbucks… but that doesn’t mean he is independent in a restaurant! But we have to be happy wherever we can be.

Also, don’t feel that she will “always be a child mentally.” She will be a teen and then a grown woman and you don’t know how she will be perceiving the world. Our kids may seem childlike but they are very much whole people. Nat seems “babyish” at times but he is a man, and he needs me to remember that and respect it. Don’t worry. All this will come to you in time. For now, try to enjoy her fantasy world, like any other little girl, help her achieve the things she can, be creative! There are no rules here, no definites. Just trying our best day by day.

Saturday, May 12, 2012

Autism Mommy Swami Question #1: Teaching New Skills?

Dear Swami,

We are backing away from years of ABA, and now working more on recreation and ADL skills in-home with Jack (who is 10).  We are “staffed” for a significant amount of time — 25 hours a week.

We have him working on things like emptying the dishwasher, carrying laundry baskets, feeding the dog, etc.  Do you have any other ideas?  How about for hygiene or recreation skills (he has none — not even interested in computers)?  Do you have anything you can draw on from your experience setting up Nat in a house, etc.?

– Catherine the Great Mom

Dear Catherine the Great Mom -

If I understand you correctly, you are asking how to come up with more things for Jack to do at home, how to go to the next level (beyond ABA-structured, engineered activities to more real-life, organic activities). Purposeful pursuits like ADL’s and self-care regimens, gainful activities for time at home. I remember when we were always trying to come up with activities for Nat while he was home, some sort of meaningful or useful things for him to do (and learn about) that would also give him the schedules and structure he craves.  It used to drive me crazy that I did not know what he could be doing during supposedly fun times.  What did “fun” mean to someone who could not tell me what he liked because he always answered “yes” by default?

First thing I had to learn was to switch around how I thought of him and his likes. Eliminate “he does not like…” from my vocabulary. Think in terms of what he does with his own time to understand what he does like, and build from that.

The idea was to take his natural activities and stretch them outward to other activities. Watch him and then think what I could add on, rather than think in terms of lists of stuff I want him to do and know.

This meant that I had to ask him what he likes in a different way from my usual front-and-center demands. I had to watch him almost peripherally, to see what it was that he gravitated towards, what he did frequently when demands were not in the picture. This way I could go from something he liked to do naturally and expand it into something that uses that as a base but adds in more. If he walked back-and-forth a lot as his preferred activity, I had to think without judgement, “What else can he do while walking back-and-forth?” Lawn-mowing, vacuuming came to mind. Lawn-mowing with a rotary blade, an old dull push mower (no motor) is a safe way to have him work purposefully outdoors and walk a lot. Pick up one at Home Depot or even at a yard sale. He can mow any which way, and you can just clean it up afterwards. Even if you have a tractor mower, leave a patch uncut for him.  Walk with him at first to make sure he can handle it safely and phase yourself out, of course.  This was what I did.

Or you can build on a current skill. You have him feeding the dog. What naturally comes next? Are there other things he can do with the dog, like put his leash on, and take a small walk around the lawn with him? He will think he is walking the dog and actually, he is. He’s just doing it on your terms.  Does he like lists? You can make lists for him that he can check to be sure he is doing the task and more. What are the steps to walking the dog? Think like him: 1) Go to peg for leash. 2) Click leash onto collar. 3) Take dog to corner of lawn near Mrs. So-and-so’s house. This is so that he’ll feel organized and so that he’ll enjoy it because a list is involved.

You asked about hygiene. What are the struggle points? What are the easy parts? You always have to find the low-hanging fruit, do the easiest stuff first and go from there. That is the stretching point, your point of entry. So if he willingly showers but refuses to wash well, what would make sense to him in terms of getting him washing? A laminated visual reminder stuck on the tiles in the shower? A Disney song about scrubbing? In our case, Nat used way too much shampoo. The way the house stopped that was to pour out a nice amount into a dixie cup. And remind him that it goes on his head, not down the drain. Get him used to the right amounts.

Now, let’s talk about “recreation skills.” Are we talking what’s fun for mainstream people or what’s fun for your son? I’m a believer in starting with the kid and going from there. My two neurotypical boys hate sports, recreation to them is laptop fun. How do I get them outside, then? The same approach goes for your autistic son. My autistic son loves sports. But we had to learn that by taking him to Special Olympics to see what it was he really liked. He likes the back-and-forth of swimming, the defined task of each kind of stroke. In basketball, again, it is the back-and-forth up the court, the way teams take turns (your team shoots, then it is our turn). He also likes the cheering and noise in a gym, it turns out. (Take that, all you stereotyping types who say “Autistic people do not like loud sounds and chaos.”)

See, all the things he already does — and it sounds like he does a lot! — can be stretched further to encompass more and lead to other things. He can pick up twigs from the lawn. He can use the wheelbarrow. But quantify these things if he needs definition. He can learn to dust his room (with gloves on). He can measure the detergent in the machine, and from there learn to measure for baking. Anything can be recreational but it’s a matter of thinking like him, not Everyone Else.

Love,

Swami Mommy

For now, even though comments are delighted in and appreciated at this blog, the Swami is not sure about publishing them on the Swami forum.  Please don’t be offended to see no comments here. Commenting will still be available on other blog posts that are not letters to the Swami!

If, however, you feel that your comments are actually questions and concerns that can be addressed by the Swami, let her know by emailing autism.mommy.swami@susansenator.com

Love, Swami