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Category Archives: diagnosis

Sacrifice

28 Thursday Nov 2013

Posted by Ann Kilter in Asperger's syndrome, Autism, diagnosis, Disability, faith, high functioning autism

≈ 1 Comment

Tags

being there., father, fatherhood, love, sacrifice

Ralph’s impending unemployment has been hard on everyone in the family. However, it has helped us to refocus our priorities, to reassess what is important.

On the way home from church tonight, Patty shared with me that she often has felt that her father wasn’t always there for her. That she sometimes sought other father figures. In part because Ralph went to bed around 8:00 p.m. every night because he worked from 5:00 a.m. to 2:00 pm every day for at least 15 years…since she was five years old. He was often exhausted.

She said, “I realize now that he sacrificed himself for us. He worked hard to provide the things that we need. So many fathers are concerned about other things, but his chief concern was us.”

12 “Therefore, I urge you, brothers and sisters, in view of God’s mercy, to offer your bodies as a living sacrifice, holy and pleasing to God—this is your true and proper worship. 2 Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.” Romans 12:1-2

The Checklists

12 Saturday Oct 2013

Posted by Ann Kilter in Achievement, Asperger's syndrome, Autism, diagnosis, Disability, faith, high functioning autism, Independence, Miracles, Tests, Transition issues

≈ 3 Comments

Tags

acronyms, autism, Betrayal, checklist, high functioning autism, truth telling

When Will was four, an alphabet soup of diagnoses followed his name: SLI (speech and language impaired), SID (sensory integration disorder), FMI & GMI (fine and gross motor impairment), BI (behaviorally impaired), MI (mentally impaired), etc. Amazingly, he did not fit the profile for ADD or ADHD. Acronyms had to be used in part because there was not enough room to type his diagnoses on the Individual Education Plan Forms.

At seven, AI (Autistic Impaired) was added by Dr. Smith, a child psychiatrist specializing in developmental disorders.

Eight weeks before our visit with Dr. Smith, a thick packet of paper arrived in the mail.

Half of the papers were Authorization for Release of Information forms. I was instructed to sign and date the forms and return them, along with a list of all the doctors, therapists, and schools involved with Will’s care.

The other half was a Parent Reporting Form. The first page consisted of demographic questions (Name, date of birth, address, parents’ name, etc.).

The second part of the form was a long list, with instructions to check off the items that pertained to Will. The items on the list varied from the mundane (preterm birth, full term birth, weight at birth, ethnic background, 1st language, etc.) to those which identified characteristics due to developmental differences.

Some of the significant items for Will, along with my comments:

Unusual fixation or fascination with objects – Will was utterly fascinated from a very early age with lights. When he was a baby, he would twist himself around in his high chair to to view the lights through his half-shut eyes, looking through his eyelashes. I worried at the time that he might do psychedelic drugs when he was older.   Later, when he could actually reach light switches, he turned them on and off constantly. It was like a disco at our house. We moved the furniture away from light switches. That helped until he was tall enough to reach the light switches. He made it his business to find out where the light switches were in every building he entered. When he was three years old, he escaped from the nursery at church and found the light switches to the sanctuary. The lights flashed on and off during the Sunday School class.  A deacon came out to discover a giggling three year old playing with the light switches. After that, they made sure the doors to that bank of switches was always closed.
Lack of eye contact or qualitative difference in eye contact. Will not only had very fleeting, if any, eye contact; he actively resisted efforts to encourage or force eye contact. My mother would hold his face in an effort to get him to look at her when he was naughty. It was futile. Once, when we were talking to his preschool teacher when he was eight years old, he twisted his body in all different directions to avoid making eye contact. We instructed him in eye contact and practiced it. He eventually made eye contact with his father and me, but nobody else. He could read our faces, but he had extreme difficulty reading the faces of strangers. We found that forcing eye contact completely obliterated his ability to listen, so when we needed to emphasize behavior changes, such as not running across the street, we sat next to him and talked to him.

Sensory differences. Did I say lights? Also, he was highly sensitive to touch. He was extremely ticklish. He couldn’t stand any tags in his clothing, and he did not want to wear knit clothing. One of his therapies was brushing him down with a soft brush to improve his tolerance to touch.

Impaired social interaction. He could not initiate and/or maintain interaction with children his own age. He had extreme difficulty making friends. He screamed if any of them came near him. As a result, he was very isolated.

Constant talking. He could talk all day about Power Rangers long, long after I had lost interest in the subject. Later it was video games. And still later, it was computers.

Insistence on sameness. He always had to have the green plate, the green glass, the green toys. He would wear green clothing if he had the choice. We often gave him the choice because we had other battles to fight. He became upset if we took a different route to church or the store.

Difficulty transitioning from one activity to the next. Will would scream if it was time to change activities before he was ready. Changing from story time to outside recess was especially problematic.

Perseverative behavior. Will would open and shut doors over and over again. We had to put spring loaded latches on all the doors in the house because we were afraid that Will would shut his sisters’ fingers in the door.

Articulation difficulty. Will was difficult to understand.

High pitched  and sing-song voice. Will’s voice was very high pitched. He also talked in a sing-song tone of voice. His inflection was off. In American English, the pitch of the voice typically rises at the end of a question and goes down at the end of a statement. Will’s sing-song inflection affected his intelligibility.

Gross motor delays and hand eye coordination. Will couldn’t bounce a basketball. He never learned to ride a bike.

Fine motor delays. As a result of his fine motor delays, Will took much longer to learn to tie his shoes and cut his own food. His writing was labored, slow, and very difficult to read.

Etc., etc.

The last part of the Parent Reporting Form consisted of several essay questions. Do any other members of Will’s family have developmental issues? Describe a typical day in the life of your child. Do you have any other concerns about your child?

I spent three hours checking items on the list, and writing out the answers to the essay questions. Toward the end, tears rolled down my cheeks. On one hand, it had taken three years to get approval from our insurance company to have Will evaluated by Dr. Smith. On the other hand, I felt that I was betraying my son by telling the truth about him. Because I loved him with all my heart, I wrote the truth, unadorned. Then I sent the whole packet back to the doctor.

Within 20 minutes, Dr. Smith diagnosed Will with extremely high functioning autism (HFA).

Every year I had to check off a list of characteristics and write answers to essay questions to prove that he still qualified for autistic impaired services. Every three years, I had to fill out a more extensive list. I filled out lists like this for his sister as well. Sometimes I felt very discouraged.

Will is an adult now. He still has autism, but I no longer fill out any lists or write short essays.  I have always believed God has a plan for him – that is our encouragement to him and to ourselves. He has a very good job as a web design consultant for a large corporation. He cooks, drives, and keeps his apartment reasonably clean.

All the checklists and essay questions were worthwhile. Truth telling, unadorned, turned out to be for the best.

Will at 4

Advice – Making Choices

23 Monday Sep 2013

Posted by Ann Kilter in Asperger's syndrome, Autism, diagnosis, Disability, high functioning autism

≈ 1 Comment

Tags

advice, asperger's, autism, discipline, making choices

Parents get advice and sometimes criticism from all sides; and this is no different for parents with autistic children. Some of the advice is offered kindly; some of it is thrown with a dash of contempt. Our choice was how to respond.

“If you would spank him, he would straighten up.” From my parents and other relatives. We tried it, once. My son thought we were playing. I think about it now and I cringe. We chose to try other methods of discipline.

“What a brat!” Said a young woman when my son was having a meltdown at age four as we were leaving a women’s Bible Study. I was too busy trying to get him and my two daughters into the car to reply. This was one of many such encounters. I chose not to reply or defend myself or my children; I chose to turn my attention to my kids. Still, I pondered these things in my heart, later when it was quiet.

“Try to get your kids into a bedtime routine at night.” This was helpful advice and worked perfectly with our kids. Our routine involved bath time, story time, and singing their father’s made up songs. Each kid had a different song. Autistic kids thrive on structure.

“You shouldn’t give in to him. Make him take the blue plate. You are spoiling him by always giving in to him,” said my mother on numerous occasions and in various forms. My son was committed to green. He wanted the green plate, the green glass, green shirts, green blankets, green toys, and green pop (7-up and Sprite came in green bottles at the time). If it was in our power, we chose to let him have as much green as he desired; and we advised others to do the same. When my mother took care of him, she tried to make him take the blue plate, with predictable results. She wanted to prove her point.  I said, why not let him have the green plate? Is that so difficult? He’ll grow out of it. His fascination with the green did fade with time. It took 10 years, but is that so bad?

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We had to choose our battles and ignore some advice along the way. With autism, there are so many battles to fight. We only had energy for the important battles. We battled our son over crossing the street at the right time; not over whether his sandwich was cut in triangles.  We struggled with teaching him how to cut his food; not whether his plate was green.

 

Conundrum

27 Tuesday Aug 2013

Posted by Ann Kilter in Achievement, Asperger's syndrome, Autism, diagnosis, Disability, faith, high functioning autism, Independence, Support, Tests

≈ 16 Comments

Tags

asperger's, autism, conundrum, disability, equine, equine therapy, fraud, ostracize, Sophie's choice, therapeutic horseback, therapy

When we began going to autism workshops and conferences, we found ourselves the subject of many sales pitches for the newest therapies that would produce miracles.

We also were sometimes pressured by parents in the local Autism Society to make a commitment to purchase a certain therapist’s services in order to “bring her to our community.” Enough parents had to participate in order to pay for her services to make it worth her while to come. Auditory integration training would cost $2,000 for a set number of therapy sessions. Music therapy was $100 an hour.

There were two problems with this.

First, we could not afford it. We were just scraping by as it was. Several options were presented – beg the money from our relatives, put it on a credit card, get a bank loan or a second mortgage on the house.

Second, which one of our children would we choose? Choosing them all was out of the question.Should we choose our gifted, disruptive autistic son or our quiet, multiply learning disabled autistic oldest daughter? Or our youngest, questionably autistic daughter? An impossible choice.

Therefore, we said no. As result, we were ostracized for not “participating for the good of all the children in the area.”

Instead, we chose to invent our own therapies out of ordinary life.

We listened to classical music in the house for our music therapy.

We were blessed by a piano teacher who was willing to try to teach my son. He enjoyed music, singing in tune with gusto. After a year, she noted that he had an aptitude for music. She taught him for 12 years. After that year, we ask her to teach our oldest daughter in order to improve her finger strength and coordination. I thought it might help her learn to hold a pencil. My youngest daughter wanted to do what her brother and sister did. This cost $10 a week per child – a pay as you go therapy.

We chose to take advantage of community subsidized speech and occupational therapy offered by Easter Seals and the Rehabilitation Hospital. These required small payments times three.

In spite of extended and persevering effort, learning to ride a bike did not happen. Instead, we found equestrian therapy – offered at a discount due to the generous donations of the community – also paying as we went. Our children were unable to ride a bike due to balance issues, but they were able to eventually learn to ride a horse independently.

These choices stretched us financially, sometimes heavily, but we made the sacrifices on a weekly, monthly basis. Choices of “miracle therapies” with little proof of efficacy would have bankrupted us.

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Learn more about the benefits of equine therapy here: http://www.autismkey.com/equine-therapy-for-autism/

Results Not Typical

25 Sunday Aug 2013

Posted by Ann Kilter in Achievement, Asperger's syndrome, Autism, diagnosis, Disability, high functioning autism, labels

≈ 6 Comments

Tags

asperger's, autism, bedtime stories, Good Night Moon, reading

“In a great green room, tucked away in bed, is a little bunny. “Goodnight room, goodnight moon.” And to all the familiar things in the softly lit room—to the picture of the three little bears sitting in chairs, to the clocks and his socks, to the mittens and the kittens, to everything one by one—he says goodnight.”

http://www.amazon.com/Goodnight-Moon-Margaret-Wise-Brown/dp/0064430170

When Mary was two years old, we read this book to her every night for a while. I would walk around her bedroom with her, facing forward in my arms. We would say goodnight to the light switch, good night to the curtains, good night to her teddy bear, etc. And she would giggle. And then settle down. It was part of the ritual.

From babyhood, we read books to our children, cuddling them as they went to bed. We also read stories whenever they would bring us books to read. We are a reading family.

So when Mary was placed in special education at 5 years of age, with a 2.5 rated age for reading readiness, among the questions that I asked myself over and over was “Haven’t I read to her and with her since she was a baby?” It didn’t make sense to me.

At that time, I tried to follow guidebooks. Dr. Spock was my go-to reference book. If parenting could be done by the book, I was an expert. Earnestly, we raised our children. We cared for them, read to them, gave them delicious food, played with them, etc. We did what all caring parents do for their children. Maybe there should have been an asterisk on Dr. Spock’s book and all such books – “Results not Typical, for special needs children.”

When my children were all placed in special education in the space of a year (1991-1992 school year), all that we had done for them was thrown into doubt. Why, if I did everything by the book, were my children in special education? It all seemed upside down.

I didn’t throw my Dr. Spock Baby & Child Care book away, but I wanted to.  I kept it for disease identification from that time onward, having to do with measles, pinkeye, etc.  (There was no Internet back then.) I started reading different guidebooks.

However, we did continue reading to our children. We did continue the night time routines. They say many children with autism thrive on routine and structure. (Breaking the routines can and did result in meltdowns). For our family, the bedtime pattern (bath, story, song, prayer), remained a very precious time.

**********

What were/are your children’s favorite stories?

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