Susan's Blog

Sunday, March 31, 2013

Red Tape Rant

Nat had a strange rash today. I got the call from his caregiver, who also sent me photos of the rash via text. I immediately remembered the shingles Nat had a few years back. Shingles is an awful disease that is related to chicken pox. It hurts and hurts and it takes a while for it to clear up. I called my sister who is a pediatrician and sent her the photos. It was just a rash, she concluded. Thank God. Give Nat Benadryl, she told me.

The thing that bothers me is that when I called the house manager I was told that legally, the caregivers are not allowed to give Nat Benadryl without a doctor calling the pharmacy and signing off on it. What? I said, “Well, can I give it to him? I’m his legal guardian.” And his mother. So, of course I could do that, and even though Nat had just gone back to his home after spending the night here, they had to bring him back so that I could give him an antihistamine.

Makes sense, right? So riddle me this. What if Nat had — God forbid — been anaphylacting over something, and needed Benadryl? Would the staff have had to wait for all that red tape before helping him??  If so, then this is insane. The state purports to care about these guys like Nat, with this kind of overprotective shit, while still denying person after person funding and housing because the resources are too tight. The caregivers watch over Nat at night, give him meals, drive him around. We trust him in their cars, we trust him to their care. But there not allowed to administer Benadryl, for God’s sake?

Spare me this sanctimonious safeguarding, State of Massachusetts. Until you show me that you can take care of every vulnerable person — homeless children, impoverished elderly, destitute veterans, the disabled — then keep your sticky red tape off my kid.

Saturday, March 30, 2013

The Dreaded Cycles

Nat’s anxiety has returned. Or should I say, Nat is anxious these days? With someone who doesn’t have autism, I would say the latter. With Nat I say that his anxiety has returned, which gives away my own anxiety about what I used to call Nat’s “cycles.” I used to think of Nat’s psychological statein terms of the famous seven years of feast, seven years of famine. We would have periods — of 3-6 months usually — where Nat would try new things, answer questions, keep calm (not in the cliched British sense) and go with the flow of our whitewater family. Then, inexplicably, there would be another phase. Nat would stare out the windows at the streetlights and ask repeatedly for them to go off if they were on too late into the morning. Or he would watch Ned’s feet to make sure his shoelaces were tied. Or he would walk quickly about the dining room until Ben finally came in to have his breakfast.  Screaming, repeating questions ad infinitum, trying to get something out of us that probably did not exist. We did not know what caused it and we would try all those things that people tell you to try when your life goes out of control: (supplements, diets, regimens, etc.). I would get articles from well-meaning relatives that would be about scientists’ new optimism about mitigating the symptoms of autism. It would always annoy me. There’s really nothing new under the sun that I’m going to try for Nat. I’m sorry. I tried so much when he was younger. Looking for — what? a cure? a change? How do you measure progress if you don’t have a baseline?

Well, for the first time in years, as I said, Nat’s anxiety is back. Unlike those other years, I know why. Maybe I even knew why then but it was all so scary to me — having a kid who simply could not communicate pain, discomfort, anger, desire. He would jump up and down, screaming, biting his arm, hitting us, clawing us. There was no place to be that felt safe. Put him in his room and pull the door shut and hold fast to the doorknob for — a minute? How long was this supposed to last? How do you gain control. It was so fucking scary. You just watch, cry, or duck.

Nat is anxious because they have not yet moved into their group home — the new house, that is. Yet they had been told months ago that it would be “soon.” But unfortunate event after unfortunate event has prevented this from occurring. Now there has been a problem with the plot plan, the permits not being pulled, and various other P-based pain.  There have been no tantrums, no arm-biting, no screaming. But he is clearly anxious. Wide-eyed, hand wringing nervous.

Poor Nat. Oh my God. I want to comfort him but he will take no comfort. If I look at him empathically he says, “Noooo.”  What he needs is predictability, Goddammit, haven’t we covered this already? How can it be that his service provider has messed this up this badly? Of course, now that the parents have yelled and screamed a lot, there has been progress. They will be moving “soon!” Yay, soon.

Meanwhile Nat is running around like a squirrel asking with his eyes when his nervous living situation is going to smooth out again. And of course he looks at me the most. I am still Mommy The Great and Powerful. That melts my heart and scares the shit out of me. I am still the main one in his universe who really truly has got to keep it together. And we all know how stable I am.

Plus, even if I knew what to say to him, he’d probably still say, “noooo.” So I guess we are going to have to wait until the cycle changes back.

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!






Saturday, March 16, 2013

Dealing with what comes up on a walk with Nat

I got the the following article from Sunday Stilwell at Extreme Parenthood, and it really stirred up some stuff for me. We really have so many of these “odd souls” flying around these days. So many Nat-like guys in our stores, restaurants, streets, schools. We all know this, we encounter these people every day. We become friends with people solely because we share this experience, of taking care of someone who is Not Like Everyone Else. Not “normal.”

But with so many “not normal,” doesn’t that change what normal means? I guess that technically neurotypical, Developmentally On Time people are still in the majority. But the DD guys are so very visible, God bless them. Nat is so gloriously autistic, even when he is not flapping, not talking to himself, not walking fast. There is just something in his overly-alert, anxious-to-comprehend stare. His stance is uncertain and yet starkly evident against the blur of strangers.

Maybe that’s just my perception. But I have to look at it. And so I did. There he was trudging up High Street, his jeans a little too short to be stylish, no matter what I do to fight against his dressing disabled… please forgive me, but I know many of you know what I mean… with the huge CVS bag filled with 12 rolls of toilet paper. Like an old person, somehow. Two young woman walked purposefully downhill towards him, stepping adroitly out of his way. I heard snippets of their busy lives’ conversation, their competent, to-the-point words. They were roughly Nat’s age.

But today, before the sadness of missed potential descended fully, my own wider, open self kicked it out of my head.  You, Ms. Senator, are judging him. You are seeing him as inferior to them when you talk about missed potential. You are automatically assuming that normal is superior. That he is missing something, when truly he is existing on the same plane as them. Humans, humans, everywhere, each with a different set of neurons and experiences and synapses linked or not. One mind does not exist more fully, does it? We are all breathing the same air with our animal lungs, we are all evolved from apes and alive.

Yet my eyes can’t lie. There is sadness behind them anyway, and I suppose my words will not pat them away. The answer, then, is simply to go find Nat and give him a kiss.

Wednesday, March 13, 2013

Old Deval Had to Fund…E-O-H-H-S

Here’s a parody I came up with while riding my bike today. Inspired by budget difficulties for our state agencies under EOHHS (Executive Office of Health and Human Services), it’s called “Old Deval,” (our governor) and it is sung to the tune of “Old MacDonald had a farm.”

But first, here’s a glossary:

1) DDS = Department of Developmental Services  (under the aegis of EOHHS, along with Mass Rehabilitation and Mass Department of Mental Health)

2) ID = Intellectual Disability

3) Aspie = Person with Asperger’s

4) ASD = Autism Spectrum Disorder


And now, on with the song!

Old Deval had to fund E-O-H-H-S:

He had to fund the DDS …


With some ID her and some Aspies there

Here ASD, there ASD, everywhere ASD

Old Deval had to fund E-O-H-H-S


He had to fund Mass Rehab…


With no job coach here and no support staff there

Here a cut, there a cut

Everywhere the budget’s cut

Old Deval had to fund E-O-H-H-S


He had to fund Mental Health…


With some stigma here, and no nurse care

Where’s the home, nowhere’s the home

So that is why the street’s their home,

no job coach here, no support staff there

Here a cut, there a cut, everywhere the budget’s cut

ID here and Aspies there

Here ASD, there ASD there, Everyone’s got ASD

Old Deval had to fund… E-O-H-H-S!



Friday, March 1, 2013

Tim Shriver: Next Pope Should Be a Mystic

Once again, my friend and mentor Tim Shriver (Chair of Special Olympics) hits one out of the park, with this brilliant Washington Post oped!