Friday, January 8, 2016

When Disabilities Interrupt All Else

Margaret with her asteroid bear.
It is not uncommon for things to interrupt the schedule. Friday the children have occupational therapy and that takes a bit of the day. While they were busy I was able to get some cleaning done. I check my email and I find the neuropsychology reports were finally in!  Yea!  I go and read the reports and find that there were quite a few errors.  This is common when someone sees all the children. They tend to get the information for the children mixed up. It took me over three hours to print, read, and correct the reports with a lot of interruptions in between so there was no homeschooling.  Thankfully the medical history stuff was really the only part was the only part that was jumbled. That was the first two pages.  I did find errors in other areas of the report but they were small.  When the report got to the testing and results I had to slow down my reading just to absorb what was being said.  It's tough to read. To see your children's strengths and weaknesses put in such a bright spotlight!

Corrections from Joseph's first page of
his Neuropsych report.
First I read through Margaret's report. I knew it would be less complicated and I was curious of the doctors impression of Margaret.  The report states Margaret was diagnosed with autism at two.  This is wrong. Early Intervention (EI) in Nevada was of NO help!  I had one care provider come into my home and yell at me because I was not forcing my children to sit down and read to them at two. She was a nasty person that I did not let back into my home.  She was on there twice and the second time there she said my children were running around wild and that if I taught them to sit and listen then her former job as a Kindergarten teacher would have been a lot easier. I was so angry I sat stunned for a moment.  I had to stop myself before I said something really angry myself.  I reminded her that she now worked for EI and that the children she saw ALL have issues or else she would not be there!  Then there was my main EI support coordinator. I kept tell her how unusual I thought Margaret's behavior was (constantly in motion, only said things she heard from TV, her dancing, singing, running around waving her arms, her lack of interest in things and when she was interested in something how it was an unusual preoccupation).  She never mentioned to me about the possibility of autism.  No, I find out about that by running into a woman while I was at a free class on how to file for divorce in Nevada (yes, having multiple disabled children has strained our marriage).  This lady spoke up in the class and mentioned she had disabled children. So I stopped her and talked to her in the parking lot after the class.

I explain to this stranger Margaret's odd behaviors and she said it sounded like Margaret may have autism and I should get her evaluated.  Not once was this mentioned by any of the specialists we had seen, her regular doctor, or any therapist. No one! This stranger, an angel is how I think of her, pointed me in the right direction. SHE had the nerve to mention the big A word, autism! I went back to the EI coordinator and asked why she had not mentioned autism.  Do you know her response? She said, "You had filled out the ADOS and it did not score high enough to test for autism and it is not my job to say anything." What?  You are with EI!  How the heck was *I* suppose to realize it was autism?  What was this ADOS she mentioned???

When EI first came to my house tiny 800 sqft home to do the intake they did not tell me who all they were bringing.  They show up at my door with FIVE people on their team PLUS TWO interns. We squeezed them all in (people had to sit on the floor) along with my husband, myself, and three two-year olds. In the chaos these people where firing questions at both me and my husband about the children while they were buzzing around us.  There was a ton of paperwork to fill out so John thought the would help and fill some out himself. Even though I was the main care provider for the children the the last year he filled out the paperwork.  John filled out the ADOS.  The way he scored it and they way I scored it was VERY different!   John's evaluation did not score high enough to warrant more testing yet when I filled it out Margaret was considered borderline and worth testing.  This happened ONE MONTH before the turned three and aged out of EI.  I was able to get the initial testing completed and that came back as inconclusive. After more psychological testing and observations she was diagnosed with autism at about 3.5-years old.

I lost a year of her autism diagnosis (which does help you get more services) because I thought autism was a kid who did not talk and bang his head on a wall.  There was SO much I did not know back then!  Little did I realize that was only the beginning of my journey of digging into the medical mystery of Joseph, determining answers for Margaret, and trying to keep my head above the water with James.

Back to Margaret's report....

The report is broken down into sections. The first section is Behavioral Observations that occurred during the testing.

Behavioral Observations:

  • Decent eye contact but poorly modulated and uses minimal pointing or gesturing
  • Speech was variable with occasional echolalic and slurring (speaking too fast) speech
  • Easily distracted with long lapses in attention
    • distracted by sight, sound, and sensory
Test Results for:

  • Falls in low average range for same age
Sustained Attention
  • Attention issues observed and verified by testing
  • Variable ability to encode new information across tasks
    • effects ability to efficiently learn new information
  • Low frustration level for tasks not readily understood
Executive Functioning
  • Area of weakness
  • Cognitive flexibility is weak across multiple measures
  • Fluid reasoning is variable and fluctuates depending on the nature of the task and if a pattern was easily identified
    • Fluid reasoning is the ability to solve a novel problem 
  • Working memory is a significant weakness (I used to joke around she has the memory of a goldfish. Apparently, I was pretty close to being accurate. :(  )
    • Working memory requires the use of holding information in short-term memory and requires adequate attention and concentration in order to complete tasks
  • Significant variability was seen in testing
  • Performance on immediate memory tasks was generally lower than her performance on delayed memory tasks
  • Margaret will need more time to consolidate and store new information to memory
  • Testing shows an issue with visual encoding of new information
    • She is more of an auditory learner at this point. Maybe due to her vision problem now and needing glasses?
  • Difficulty maintaining adequate attention over time and from task to task
Processing Speed
  • This is an area of relative weakness and falls in the impaired range with others of the same age
  • Testing tasks used visual scanning and visuomotor coordination
  • Fine motor delays have been a history of weakness and is still an area of relative weakness
  • Problems with visuomotor integration are a relative weakness falling in the 1st percentile when compared to kids of the same age
    • Handwriting samples were poor with immature pencil grasp
    • Grooved Pegboard and bilateral tasks concerning fine motor skills were in the impaired range
Academic Skills
  • Reading and reading comprehension skills are an area of strength
  • Math skills are significantly weaker and less developed in calculation and applied math
  • Observation shows pragmatic speech and communication delays
    • consistent with autism
  • Ability to understand people's perspective might be different from her own is borderline
  • Strengths
    • Reading skills, verbal reasoning abilities, and visual reasoning abilities, good eye contact, ability to spontaneously share information, and asking for clarification when needed
  • Weakness
    • Distractability, cognitive flexibility, working memory, inhibition, planning behaviors, tendency to withdrawn from social situations and retreat into her own imaginary world, repetitive speech patterns, and pragmatic speech skills 
Diagnostic Impressions

Autism; Encephalopathy, NOS; and ADHD

There are a lot of academic and social recommendations along with about 9 books for recommended reading.

I know Margaret has issues but I have to admit I cried a few tears reading this.  It is hard to read the tough truth about your child like this and not shed a tear. My dream for her is to be able to have a profession, if needed, to take care of herself but my wish for her is to have her own family someday. This lets me know we still have a long way to go for that to possibly happen. On the other hand we Margaret is running around with her old block that rattles and she is telling me that he is an asteroid bear that has come to Earth and crashed his imaginary space rocket in our backyard. Then she heard Pandora play the song Let It Go and she starts singing. It is tough wanting her to grow up and then turn around and listen to her crazy, quirky imaginary stories. My heart breaks for her in some ways. Will she always be carrying imaginary stories AND still be responsible enough to take care of a baby by herself?  Will she be able to hold a job and not forget to show up? I just don't know and only time will tell....

Margaret singing Let It Go but getting distracted. 

Margaret telling me her grape kool-aid looks like a black hole. 

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