Missing Teen, Happy Ending
An Open Letter to Nick Paumgarten, Author of “The Message of Measles”

Autism’s Not Yet

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By Cathy Jameson

Every few months, I’m asked to fill out some sort of questionnaire for Ronan.  Each form has several categories.  Each category asks multiple questions.  Each question builds upon the previous question.  To be scored as accurately as possible, I know that I need to answer every question as honestlyas I can.  Scoring is important as it can determine an updated treatment plan or therapy goal.  Even so, long before I’m given them, I dread filling out those forms.  It takes a lot of energy for me to start answering them.  It takes even more for me to return them.  I should be happy to finally be done with the task and give the sheets back to whomever has asked me to fill them out--a doctor, an educator, a therapist--but I find that it takes me days to return them.  The dread of getting the results or standardized score can be just as unnerving as was answering each question.  

At this point with how many assessments I’ve filled out, I should be used to this process.  

But I’m not.  

That’s because some answers are hard to swallow.  

Does your child… 

-toilet on his own

-make his own meals

-know how to budget for a shopping trip

As with many assessments, questions and sections become more complex.  On the first few pages, I can usually check off that Ronan can Always or can Usually perform whatever it is that’s asked:

My child will…

-turn his head toward me when his name is called

-follow 1- and 2-step directions

-understand a routine with and without picture cues

 

But when the assessment items become more complex, I begin to cringe.  

 

My child can…

-write a school report with proper punctuation and grammar

-communicate personal goals for himself

-navigate (i.e., ride a bicycle or moped, drive a car) into town to run an errand on his own

If I’m filling out any of these forms in the waiting room, I turn so that no one can see how quickly my emotions change when I get toward those prompts and for these as well:  

Can your child…

-walk one city block by himself

-use public transportation without assistance

-call friends on the phone to make future plans with them

When I know that I will be choosing No, Hardly Ever or Neveranswers, like for those above, I end up staring blankly at the page in front of me.  

The last few pages could be done rather quickly since Ronan cannot do what’s being described, but I freeze when I read them.  I’m grateful for the positive answering I’ve been able to do - Look at Ronan go, go, go!  But those more comprehensive skills at the end may never be achieved.  Seeing them remind me just how intense his autism reality is - He can’t, won’t, and could never!  That intensity hasn’t lessened, even with the improvements he’s been able to make, and those assessments continue to remind me of that.  

I almost froze again last week when I reviewed an assessment that I filled out a few months ago.  I filled it out in the beginning of 2019 and had forgotten all about it.  Before I got down in the dumps looking at what Ronan had still yet to accomplish, I decided to change my outlook mid-way through reviewing it and especially before I got to the last section.  While the requested replies were still NoHardly Ever or Never for activities I knew that Ronan couldn’t do, I replied with Not Yet.  

Not Yet can my son use the toilet on his own, but he’s getting there.  If I had to put a number on it, I’d say he was about 75% toilet trained! 

Not Yet can he make his own meals, but he sure does tell us when he’s hungry.  He does that with sign language and by getting out not one bowl on the counter, but 7 bowls! 

Not Yet can Ronan budget for a shopping trip, but he knows that he needs money to make purchases.  He can’t count the money, but we put some in his wallet and prompt him to take out on his own, which he does!

Baby steps have brought Ronan a tiny bit closer to those successes.  Lots more work will be needed to get Ronan closer to success and toward independence:

Not Yet can my child walk one city block by himself, but he still lets me hold his hand when we go for walks in our neighborhood!

Not Yet can Ronan use public transportation without assistance, but he’s able to sit without any meltdowns in the car wherever we go! 

Not Yet does Ronan call friends on the phone to make plans with them, but he sure does love video calling Daddy when he’s on a work trip!

I’m going to stick with the Not Yet answers for now.  That may not be officially acceptable by the agencies or entities asking for information, but it’s a perfect response for our situation.  It gives Ronan, and me, room for improvement.  Not yet is my child doing whatever is age appropriate.  Not yet is my son on grade level for some school subjects.  Not yet have we controlled the seizures with certain treatment suggestions.  But by golly, he’s still trying.  And I’m still trying, too!  With every task he’s asked, with every obstacle he overcomes, with every effort he makes, Ronan’s trying.  He’s trying to catch up, to maintain, and to do his best.  I don’t care what the forms say.  I don’t need to waste time worrying where he falls on a scale.  I know he’s delayed.  I know his skills are limited.  I know he needs help.  He’s getting help.  He’s getting loads of support from people who love him and want to care for him.  Because of that, Ronan is learning.  He is growing.  He is happy.  And he is moving in a forward direction at his pace.  As long as he keeps moving forward, I’m happy. 

Cathy Jameson is a Contributing Editor for Age of Autism. 

 

 

Comments

Cia

Thank you, Beleaguered Autism Mom, I've also been dealing with this for years, Cecily is 19 now.

We didn't have any luck with a private therapist either. And the public school therapist, when I explained that you need to repair the language neural circuits in the brain damaged by the vaccine encephalitis which causes autism and stroke-like damage, especially to the langauge and social center of the brain, and you can do so by using ESL methods, English as a Second Language, and that I had already had remarkable success with my daughter by doing so. But it means setting specific minute goals (which is gold-standard ABA therapy for autism), modeling them, practicing them in very restricted, easy contexts, working up to using them independently. Just like learning a foreign language, which these children (or adults, I guess) are doing. I explained it, and the speech therapist said: But that would take YEARS AND YEARS! I said yes, it would. It has. So? The alternative is to not do anything, not teach anything, not accomplish anything, and then throw up your hands and say Well, we did everything possible. When you haven't done one single thing.

I suggested working as a team, I would email her and the private therapist what specific construction we were working on at home (and we've done four Cambridge Connect books, four Interchange books, and two Passages books. I'm now planning to start Let's Talk, but if possible use Skype to have the class with some of my friends in Mexico City, who said they'd be interested in such a class. Cecily is enthusiastic about the idea, and it would set up specific grammar and topic/vocabulary goals for each lesson.) She's still hesitant to speak independently, but has said some very complex independent sentences when under stress.

And guess what the therapist said about working as a team, everyone focusing on the same goal at the same time? Like What would you have done if....? (We were up to that level after years of ESL work at home.) Each person contributing her own ideas for setting up situations to practice it. And she said Oh, if I were to do something not specifically recommended by the National Association of Pharma-Endowed Speech and Language Therapists, I could lose my license.

And since they deny that autism is anything new and needs to be regarded as millions of children unable to use language to communicate because the vaccines caused STROKES in them, they're stuck in using therapy methods designed in the '60s for completely different types of speech problems. I had one autism resource specialist tell me Oh, Cecily just suffers from an anxiety disorder which impairs her speech. But she's heard English every day all her life. Of COURSE she knows it!

Going back to the summer when Cecily was two, First Steps sent a language therapist to our house. But, guess what? Cecily couldn't say anything, repeat anything, act as though she understood anything. She had AUTISM! And the speech therapist, being paid to give speech therapy to an autistic child, said Well, if they can't say anything at all, there's nothing I or any other speech therapist can do for them. !!! So what was all that crap about early intervention is the key to cure? Cecily was 25 months old, they said developmentally she was nine months old.

Now look at what the useless, cowardly, MFs SHOULD be doing. I'm looking at Cambridge Super Safari teacher's book level 1, designed to teach English to three year olds. The series sells four hand puppets, Gina the giraffe, Polly the parrot, Leo the lion, and Mike the monkey, that are used in lessons throughout the book. The teacher smiles and waves at the class and says Hello. The teacher encourages the child to say Hello back (but if he doesn't, the seed has been planted, and the teacher should just smile and keep going). She encourages each child to say Hello to his neighbor. She holds up flashcards with the animal characters and their names and says them (and many autistic children are hyperlexic, and learn to read by unknown means, like Cecily and me when I was very little). She says Hello, Leo, and encourages the children as a group and individually to say Hello, Leo. No pressure, they can't do it, move on. She teaches a mime for each character: stand tall and munch leaves from a tree for Gina, flap wings and squawk for Polly, growl and leap for Leo, swing arms and make a monkey sound for Mike. The teacher does one of the mimes and asks the name of the character. Make the mimes as funny as possible. If appropriate and not scary, the teacher flies the parrot or whatever to a child, and makes it say Hello, I'm Polly. and encourages the child to say Hello, I'm ---. Maybe the children will answer right away, maybe it will take a while. (Expansion activity for when it might be appropriate. Point at pictures or puppets and say long legs, long hair, strong arms, wings, etc. Then draw a wing on the board and elicit the name of the character and the word. Polly's wing. Mike's tail. ) There is a chant with music on the CD, nothing but Hello, I'm.... The music is played and when it stops, each child turns to the person next to him and says Hello, I"m. And then, when appropriate, the whole thing is repeated with Good-bye. And then when it's time to move on, the next lesson is Stand up. Sit down. Also with cards, games, practice with the teacher and neighbors, and songs.

You'd have to work out how to handle students who progressed at different rates, but ideally a student would have to show mastery of one skill before advancing to another. You'd have to have small groups to start with, and then other small groups with children still needing to practice whatever structure. And you'd have to have a supervised playroom for those unable to participate at all, or not at that time.

So why the hell are they not doing this in every school in every country in the world with autistic students? Super Safari 1 teaches very simple structures with just four vocab words per unit. 10 units, the first of three books in the series. Then comes a different series for elementary school. Physical responses are built into every lesson, as well as values. Greetings, commands, classroom items, family, age, colors, toys, I have --, numbers 1-4, pets, Where is ..., foods, I like ..., I don't like...., clothes, park, playground equipment (slide, swing), The ... is fun!

Unfortunately, my daughter never in her entire life until we started the middle-school Connect books when she was 13, never ONCE had she said Where is the ---? or I have a hamster. She had a few rote sentences which she had learned by heart, but wasn't able to use the individual words in any other sentence. She could say What are we having for supper? And that's about it. Shortly after starting the Connect 1 book, for the first time (after seven years of useless language therapy at school) she said It's over there! (pointing) It's in the garage. Who is in the tool shed? Actually, she still hasn't spontaneously said This is fun or I like.... However, a few months ago she wrote several paragraphs which were grammatically correct and about ten sentences long each about recent experiences, which she had correctly remembered. But before we did the ESL work, she DID NOT HAVE the structures in her brain and could not access them either for comprehension or expressive speech. And NO ONE in the public school system had the least interest in helping her attain them. All they can do is send home fifteen-page forms once a year with two hundred skills you have to check as to whether your autistic child can do each one never, some of the time, often, or always. Our answers the one time I did the whole thing were sometimes for ten of the skills and never for 190 of them. And NOTHING WAS DONE ABOUT IT! Nearly all the skills came down to language use, but since they have neither the interest or the ability (due to the fear of losing their license) to do anything about it, it's just another way of money spinning on their party. There was zero reason, none, to send the form and make me waste my time on it.

People who don't have autistic children just don't understand what Silence means. They do not understand that the ONLY reason typical children pick up their native language so easily is because they have intact neural language structures. You screw them up with an excessive inflammatory response to one or more vaccines, and, well, you've caused severe, disabling brain damage in that child, leaving them stranded in a world forever foreign to them.

Caroline McIlhenney

Black socks they never get dirty. The longer I wear them the stronger they get. Sometimes I think I should wash them but something inside me says no NOT YET. Camp song offered as comic relief. I was at Fedex yesterday faxing 20 pages of forms, and now I know I was not alone. We all have form-itis! Thank you!

Brian Nomi

"What Gayle Said." Never give up HOPE.

Cathy, I love reading about Ronan. Never stop writing about him.

Beleaguered Autism Mom

Cia, After YEARS of experience, I agree with your comments about speech therapists, especially those in school districts. My husband says I shouldn't be so hard on them, we were clueless about autism until our son was diagnosed and they are getting these ASD students without any additional training. But I argue I am willing to learn and I have learned a lot in the last 16 years. I have not seen any improvement on their end. ASD kids make up the majority of Speech Therapists caseloads and yet they are unwilling to change or adapt their practices, by modeling alternative technology to communicate. Once in awhile an health-insurance-provided home-based ABA therapist will drift through our lives who is patient enough, committed and capable of the interaction that is needed for our son to learn how to communicate. 20 months out of 192 total to be exact.

Christine

These forms are just one more thing that make me feel trafficked.

Why TF are there so many people being paid to harvest information from me & plug the data into some assessment application that spits out a score that shapes the interventions used, etc ... Every damn department just gives me their part of the assessment to fill out.

Why am I doing your job? More importantly, if all you paid professionals need me to do your job?

THEN WHY AM I TOO STUPID TO KNOW WHAT MADE MY SON THIS WAY IN THE FIRST PLACE? Now that he's disabled; NOW I'm the ultimate authority? If nobody can be the authority on how he functions without taking care of him, hands on, 24/7 then they can't the authority on what happened to him either.


Grace Green

Hi Cathy,
That sounds like a really stupid form - don't they always ask the wrong questions! I find it quite impossible to answer some of them, about myself, and writing a letter is even worse - takes me months. One of several good things I noticed about Ronan in your replies - he may not be able to make his OWN meal, but he sets the table for all of you! That's empathy, something we're supposed not to have. I could suggest some other replies for you to make, but probably better not to alienate your support workers.

Cia

I used to get forms like that from the school, but finally said I wasn't going to fill them out anymore, as they took a long time and were completely ridiculous, and didn't lead to a single positive step in making out teaching plans for my daughter. I would get a 15-page form, and nearly the whole thing was: Can your child order merchandise on the phone? Can he return something for a refund? Can he drive to a party? Does he attend social gatherings with same-age kids? Can he converse with them about things they've done? Does he listen to and understand news reports on television? Can he take public transportation unassisted? Can he ask the bus driver for assistance if he's unsure where to get off? Can he call public service agencies unassisted for help getting material and social assistance? Can he tell a doctor about unusual physical problems he is experiencing? Can he independently access all of the recreation opportunities available in our enlightened community?

In other words, is your child normal yet? If not, why not? Why, indeed. My daughter never got one single useful plan to help her learn to do a single one of her unmet goals. She has never even answered it the phone. And never practiced it at school or in language therapy. It was absolutely pathetic. I'd say Conversation, and they'd say Oh, yes! (face lighting up with a big smile). We work on the structure of conversation. First the greeting. Hi, how are you? Good. At the end the leavetaking. Bye! See you tomorrow! And then in the middle the body of the conversation, which is just, well, the body of the conversation. You know. Which they NEVER broke down into its constituent parts of grammatical structures, which they called syntax. I think SLTs go into that field because they get to chat constantly about themselves. It's all What did you do this weekend? (Silence.) Well, WE went to that concert in St. Louis this weekend, my favorite band, and we sang along, danced, kind of crowded, but really fun! (beaming) Now that you've heard my example, what did YOU do? (Silence.) Well, how about birthdays? I made a cake for my husband's birthday, chocolate-cherry, and you couldn't blow out the candles when you tried, they're trick candles, and it was SO funny to watch him try to blow them out and he couldn't. So, tell me about YOUR last birthday! (Silence.) Well, our thirty minutes are up, pshew, I guess I really earned my seventy dollars for half an hour of therapy.

I absolutely hate the whole racket and I HATE this farce of Oh, we know exactly what to do to educate the autistic and teach them to use language. You say it doesn't work? Oh, well, I earn a nice living just doing what I love to do most, talk about myself, so who cares?

Gayle

Cathy-I agree your response "not yet" is the same in our family too and it is also our way of saying KEEP HOPE ALIVE as Bob Moffit says in his post. We must never give up hope that one day our sons will be able to do all those things and we must keep praying for a miracle CURE for all who are affected by an autism diagnosis. Thanks for another wonderful article. God Bless you and your family.

Cathy Jameson

Thank you, Bob. I always appreciate your responses!

Bob Moffit

Cathy .. your response "not yet" .. is the same in our family .. it is our way to .. as Jesse Jackson famously says: KEEP HOPE ALIVE.

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