Veronika's Recovery Progress...Yay!!!

[Guest guest]

I've been asked by a number of people how Veronika is doing and

how/why have we decided to do Son-Rise. I realize that some of you

know the back story behind our decision and some don't, so I will tell

some of the back story before getting into Veronika's terrific

progress. If you already know this, just skim down to some really

cool things that have been happening. Veronika, who was originally

diagnosed PDD-NOS, then eventually Autism, was an over achiever for

the first 15 to 18 months of life [saying her first word at a mere

four and a half months and being the social butterfly who made friends

with everyone] lost her words, became lethargic, wouldn't look at us

and started ripping her hair out by the roots.

At the age of 3, we enrolled Veronika in pre-school for

developmentally impaired children. Though my gut was telling me not

to do it, Early Intervention said that I had to because she needed the

therapists, and shamed me into it by implying I just didn't want to

let go of my baby. So, thinking they must be right, I decided to cut

the cord and let her go to school. Starting with the PDD-NOS

diagnosis, I spent many late nights for 2.5 to 3 years searching the

Internet for something to bring our daughter back. Prior to the

PDD-NOS diagnosis, the only knowledge that I had of Autism was from

watching the 1980's TV show " St. Elsewhere " , in which the one doctor's

son was Autistic and living in an institution, and when the son was on

home visits, the child would be out of control and sometimes violent.

We would *never* consider institutionalizing our daughter, yet like

most parents of children with supposedly life long catastrophic

conditions, we worried about who would be able to care for Veronika

when we are no longer here. Adding urgency to this typical parental

reaction was the knowledge that I have Renal Disease. I had a ticking

clock in my head, telling me that I had to find help for her " NOW! "

While I've been able to avoid the need for dialysis, for now, the

sometimes crushing fatigue made it harder to keep up with Veronika's

tantrums. Last year, Veronika would have tantrums where she would

throw her head back; sometimes into my mouth or eye, or the head board

of the bed, or the floor etc. and all the tantrums seemed to generate

from an inability to communicate her wants and needs. I went to the

special needs school's behavioral management seminar that promoted a

program {Magic 1-2-3} that was ineffective and possibly dangerous {at

one point encouraging parents to ignore threats of suicide}. Then, I

took a college level course on Early Childhood Education of Special

Needs Children. Everyone else in the class was a teacher or becoming

teacher. The class text book was brand new and from a reputable

publisher, yet the newest studies it sited on Autism were from 1994,

(but most were from the '70's and '80s)...indeed it referred to Autism

as Childhood Schizophrenia!...which is flat out wrong! I was appalled

that this is what some teachers are being taught. Speaking of

teachers, we observed her first preschool teacher put a little boy in

the " Naughty Chair " for time out for taking off his shoe in circle

time...he was in the " Naughty Chair " for the remainder of circle time,

all of snack time, and potty time...the poor kid barely made it on the

bus. Even though I think time outs are pointless for kids with

Autism, the school's protocol states a maximum time out of one minute

per years old and he was 4, so it was well beyond the time that he

should have been there. Then we visited another teacher's class as a

possible switch. At the time, Veronika had a habit of hitting a chair

or table (not people) open handed when frustrated. Well, she got

frustrated by something and tried to hit the back of a chair, instead

hitting the back of the teacher. I'm so glad she couldn't see the

teacher's face...it turned bright red, her eye bulged out and she

looked like she wanted to throw Veronika across the room. We finally

found a teacher that we loved...and the assistant and most of the

therapist were great, unfortunately they were still limited by the

teaching modality of the school which limited their progress with

Veronika. She made progress, but nothing to compare with these last

few months. Also, a year ago, we had two TSS's in the span of three

months in home working with Veronika with little to no improvements.

In July 2006, we received the last of Veronika's pre-school

evaluations, and based on the report, she had made no verbal progress

with the school's speech therapist the entire year. By the way, the

school's speech therapist would handle Veronika's echolalica (sp?) by

saying " Stop it! " ...so of course, Veronika would just say, " Stop it!

Stop it! Stop it!... "

In April 2006 (after 2.5 to 3 years of Internet searches), I stumbled

upon http://www.autismtreatmentcenter.org/ and the Son-Rise Program.

My first thought was " This could be it! " ..my second thought was " If it

sounds too good to be true, it probably is. " So, I disregarded it,

but kept coming back, wondering if I was letting my own skepticism

cheat my daughter out of a real chance. My husband, , had made it

clear we couldn't do any more extra stuff e.g.(independent Speech

Therapy, Music Therapy, Art Therapy, Dance Therapy, Special Needs

Gymnastics and Horse Back Riding Therapy) because the budget couldn't

take it.

Then one event changed everything. May 18, 2006, our nephew was killed

in Iraq. Well, something like that just shakes you down to your core.

When Robbie was home for R & R in February, his last words to my husband

was " You take good care of that cute little girl. " We remembered those

words as we prepared for his funeral, and knew we had to consider the

possibilities.

We bought the book " Son-Rise: The Miracle Continues " by Barry Neil

Kaufman in June; saw changes in Veronika in July; decided to take a

trip to the Autism Treatment Center of America [

www.autismtreatmentcenter.org ] in Sheffield, Mass. for the late

August Son-Rise Start-up. While there, we met parents from all over

the world; 23 states and 10 countries...including a lady from Kenya,

where parents are legally required to leash their Autistic children in

public...she emailed me recently and she plans to come back to the US

in a couple of years, so that she can take the professional training

to become a Son-Rise Child Facilitator, then go back and help families

in Kenya. We were so impressed with Son Rise that we did something a

little kooky upon our return home, with just a month and a half to go

before their world wide fundraiser for scholarships to attend the

Autism Treatment Center of America and having never organized a walk a

thon, we volunteered to organize the local leg of Walk Around

the World http://www.walkaroundtheworld.org/ raising almost $4500

dollars [even though the far better known " Crop Walk " was the same

day]. Though we knew this meant we could only do Son Rise part time

until the walk was over, we felt a duty to help other parents have the

chance to attend this amazing program.

Even with the walk a thon, my father with a major health crisis, and a

car accident during the first few months, Veronika made great

progress. Veronika had her first real Christmas this year!!! Her

verbal skills are growing exponentially; her eye contact and focus has

increased dramatically!!! We are getting 5 and 6 word sentences like,

" Now get pudding Mom, please! " , instead of just saying " pudding " , and

" Please throw Harmony Bear to me. " instead of just saying " catch " like

she use to, and we get a lot of spontaneous language including " I love

you " s. She is engaging in imaginative play. Books use to be a

solitary experience for her...not allowing us to read to her...ripping

out pages....now we read together, I (or my husband) will read a

sentence then Veronika will continue to read out loud...not just

simple words like cat, dog, etc. but words like beautiful, umbrella,

delivery, etc. and it's not just memorizing because we switch out

books and she sounds out the words then makes eye contact to check

that she got it right. She sings songs with us and responds

pleasantly to our requests. We visited family over the holidays and

some family member who always treat Veronika like she can't do

anything were now discussing what career she might end up having.

Last week, we had an amazing shopping trip...she walked when and where

we walked and stopped when we stopped...I looked at her and thought

" Who's kid is this? " She still can have bad days, like all of us, but

they're few and far between and not as bad as they use to be.

As I stated above her eye contact has really increased, here is a note

from my journal last week:

February 1, 2007 starting 5:09 PM

Veronika gave 30 seconds of uninterrupted eye contact, as part of 10

minutes of significant eye contact with only occasional breaks of

about 10 seconds, then returning to my eyes.

Stopped eye contact for about a minute to look at her drawing, then

returned for another 30 seconds of uninterrupted eye contact, then

continued significant eye contact for another 3 minutes with only

momentary breaks of contact.

Then got up to go back to drawing.

I don't know what level of eye contact is common for

typically developing 6 year old children, but I suspect the amount of

eye contact rivals even non-Autistic 6 year olds.

As stated above, we use to do Speech Therapy, Music Therapy, Art

Therapy, Dance Therapy, Special Needs Gymnastics and Horse Back Riding

Therapy. We were constantly driving somewhere, with marginal results

at best. We dropped everything, but the Horse Back Riding Therapy.

The Horse Back Riding Therapist has embraced the Son Rise approach

with Veronika and is now using it with her other Autistic clients and

seeing results.

Recently, we had Veronika's first dental exam since we started

Son-Rise. Usually, she is put in a mesh wrap that forms a cocoon

around her to keep her arms and legs under control, also we usually

have a portable DVD player playing favorite cartoons throughout the

exam...and she still lets out a scream from time to time. None of this

really goes with the Son-Rise approach, so we decided to try without

the wrap and the DVD player.

When the dental hygienist came out, we informed her of our new

approach and went back to the exam area. The dental hygienist knelt

down [like she always does] to ask Veronika what flavor fluoride she

wanted. Veronika gave her a hug! The dental hygienist said, " Wow! I

wasn't expecting that! " As for the fluoride flavor, in the past, we

always have picked for her because she never responds. The dental

hygienist asked her a couple of times in quick succession. We advised

the dental hygienist that Veronika needed time to process the request

(the Son-Rise spacing approach), and nobody said anything for about 15

seconds then Veronika declared, " Bubble Gum! " We usually pick grape

for her. Who knew she wanted bubble gum?!?

Veronika got into the chair, laid back as requested, opened her

mouth as requested and the dental hygienist went to work. Every now

and then, we would take a break for a few seconds while Veronika

repositioned herself. The dental hygienist said, " She's like a whole

different girl. I mean, Veronika is normally a sweety, but she is so

responsive and focused. It's amazing. " The dental hygienist cleaned,

flossed, and probed Veronika's teeth with the pointy explorer tool,

and Veronika was a real trooper! The dental hygienist said to us

before we left that she can hardly wait to see Veronika in six months

because she has as a feeling that there will have been so many more

changes that she won't recognize Veronika.

Then 2 weeks ago, we had Veronika's birthday portrait done. We

always get the same photographer at Sears who works with the special

needs kids. We usually bring the portable DVD player to get her to

look in the general direction of the camera. We didn't bring the DVD

player, and we didn't need it. We got lots of great shots of her

looking at the camera...Veronika was quite the little ham! The

photographer said, " I have to know the name of this program. She

actually listened to me. She's so changed that I have to tell my

other Autism families. " So we gave her a few of the tuition

assistance cards that we grabbed up at the treatment center in

Sheffield, MA. The other day, when the photographer called to let us

know the photos were in, she commented again about how incredible

Veronika is doing and said that a lady the works at the " Miracle Ear "

department next to the photo studio had also commented on the

" fantastic " changes have Veronika has made.

While putting together train floor puzzle, Veronika stepped on

portion of puzzle causing it to come apart then became upset. Cried

and said the word " Sad. " I reacted differently than typical, I said

softly, " I know your sad. That's alright. I'll be here when your

done. " Her eyes opened real wide and stared into mine, then she

requested a tissue, wiped her face and was done. I, of course, don't

want her to be sad, but it was a cool moment because first time that

I'm certain that she told me how she felt (we had an " I'm happy " and

" I'm sick " in the past month that could have in theory been brought on

by other visual and audio cues, but this one, I am certain came from

Veronika)...which means she is starting to internalize then verbalize

her feelings, also, it was great because it didn't become a full blown

melt down. That said, I couldn't figure out why. Was it just the

shock factor of me reacting differently or something more? I thought

about that moment several times during the next day, then it came to

me. As her mom, I don't want her to be sad. If something is easily

fixed, I want to make her realize that it is not a big deal. All this

time, I been stepping on her opportunity to vent! Instead of

realizing that if she chooses to be upset, it has nothing to do with

my ability as a parent, I felt the compulsion to fix the situation.

Which just made her more mad and rightfully so....think about

it...we've all had those moments when we are working on something and

are most of the way done, then we do something (usually something we

knew not to do) and mess it up. We start to grumble, then some well

meaning family member, friend or co-worker will come along and say how

easily it can be fix and that it's not a big deal...and as we are

there trying to be polite to the barer of this unsolicited advise, we

are thinking, " Hey, you're stepping on my venting! I want to be mad

right now! " ...and you find yourself wanting to reach over and pinch

them. But you don't, even though they are incredibly annoying. ;-)

The other day, Veronika, who typically will color by scribbling in one

part of a coloring page then move on, colored two pages with

meticulous detail and responding through her actions to questions

like, " What color should the shoe be? " ...when I asked, " What color

should the dress be? " instead of making the dress just one color, she

very purposely made a two color vertical design; half the dress blue

and half the dress pink. That was a cool looking dress!

My husband, a college professor in Computer Science, received special

permission to miss a contractual obligation at the college to attend

the Son-Rise Program provided that he presented a faculty tea on his

experience. The Provost of the college recently informed him that it

was one of the best reviewed professional development events that the

college had all year...a couple of weeks ago, he received a request to

speak at the college about his experience with Son-Rise and as the

father of a child with Autism 3 more times in the next year.

For those who are interested, you can find more information about the

origins of the Son-Rise program in " A Miracle to Believe In " and " SON

RISE, THE MIRACLE CONTINUES " both by Barry Neil Kaufman. Most people

first read " SON RISE, THE MIRACLE CONTINUES " (which is about Barry

Kaufman's son Raun who totally recovered from Autism) then read " A

Miracle to Believe In " (about the Kaufman's working with the Soto

family (1978-1979), who's 6 year old son was mute and functioning only

at a 2 to 7 month level), yes, I said month.

My husband and I just finished reading " A Miracle to Believe In " a

couple of weeks ago, and though I love both books and they both have

value in learning about Son-Rise, I am now recommending everybody read

" A Miracle to Believe In " first. It is the closest thing, publicly

available, to a " how to " guide, depicting where they succeeded and

where they made mistakes...and how they recovered from those mistakes.

My husband who reads lots of technical manuals complained about the

" flamboyant " writing style...it reads more like a novel, but we were

both teary eyed as the little boy, ito, sang songs, played the

xylophone, and leaped into his father's arms, remembering him after

not seeing him for 5 months when his father had to work at the family

business. Now, to clarify this took place in the late 1970's, so the

Kaufman's can't practically adopt families like they did with the

Soto's who virtually lived with them for 19 months, but the approach

that they've honed over the past couple of decades works. The print

in that book is rather small so you may want to use a magnifier.

There is a link to a AutismPodcast

http://www.autismtreatmentcenter.org/contents/other_sections/what_is_new.php

40 minute interview with Raun Kaufman, who as I stated before use to

be Autistic. Thanks to his parents' unwillingness to accept the dooms

day predictions of doctors, Raun totally recovered and earned a degree

in Bio Medical Ethics from Brown University. There is also a link to

video interview with Raun on " Ireland AM " at

http://www.autismtreatmentcenter.org/contents/reviews_and_articles/videos.php

After deciding to keep Veronika from Kindergarten, the mother of an

adolescent child with Autism pleaded with me saying, " , you

don't know what Veronika needs...The school does! Besides, you need

the time away from her to regroup because it is only going to get

worse!! " I have enjoyed my daughter more these past few months than I

have in years. Although we met some terrific people at the preschool,

if I would have known about Son-Rise years ago, she would have never

gone. There was so much stress in our house and sometimes over things

that seem really stupid now...like the day I had to rush to dress

Veronika 3 times to go to school because every time I turned around,

she had stripped down to her underwear. When I'm working with her

these days, she can wear whatever she wants. Remember, I said that I

had a ticking clock in my head urging me into panic state? Well, the

subject of that clock came up the other night. My husband asked,

" Have you heard the clock lately? " It was then I had a realization

and replied, " No! Haven't heard that darn thing for months. " :-)

Well, that's all the changes that I can think of, though I'm probably

missing something. I've been ready to send this several times then

remembered something else. One last thing, Veronika had a physical

change...last night she lost her first baby tooth. She was upset for

a couple of minutes then had fun looking at the hole in the mirror. I

can't believe she's growing up so fast!

Good night! Zzzzzzzzzzzzzzzzzzzzz....

--- " Son-Rise Mom "

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There is no such thing as " false hope " !

http://www.autismtreatmentcenter.org/