Friday, June 7, 2013

Some answers.

We finally have some answers.  I feel relieved and overwhelmed at the same time.

Dan and I met with the neuro-psychologist yesterday morning.  I was sick to my stomach for several hours beforehand.  I think it was the culmination of all that's happened this year and I was so on edge I thought I might burst!  It was truly an effort to keep it together.

They tested Amelia for a number of things....Intellectual Functioning, Verbal/Linguistic Abilities, Visual Perceptual Functioning, Attention/Impulse Control/Executive Functioning, Sensorimotor Domain, Memory Domain, and Social Perception.  She used terms like NEPSY II, BASC2, and WISC IV.  All very confusing and overwhelming.

Thankfully, Dr. J. explained everything and I think we have a grasp of what we're dealing with.  She listed 4 main issues that she has diagnosed her with.  They are:  Reading Disorder, Cognitive Disorder, Mood Disorder and Disruptive Behavior Disorder.

She went into detail about each one and explained exactly where her weaknesses are.  I had never heard the term "executive functioning" before.  She told us that difficulties with executive functioning can present in children as problems with impulse control, organization of time and materials, emotional modulation, and task completion.  These are exactly what she's struggled with all year long!  She also said that in a lot of cases, these type of kids are monitored constantly, told to stop doing things  or to go and do other things.  As a matter of fact, she said that Amelia may try to do the right thing, but she's just unable to do so and this frustration is was leads to oppositionality.  Sometimes the social difficulties that she has can lead to her failing to notice things going on and so she misses the cues about how to behave and how not to behave, as well as acting before thinking which is something she does a lot!

When it came to her reading skills, she said that Amelia had some difficulties with verbal/language skills such as phonological awareness, lexical access and oral motor control.  Now honestly, I've never even heard the words phonological or lexical before, but she explained that basically, she has trouble reading some words but when those same words were read to her, she was immediately able to give the correct meaning.

So where do we go from here?  Well, the psychologist provided us with pages and pages of recommendations.  Some of them included things that I've thought should be provided to Amelia from the very beginning.  Sadly, the school/teachers have no clue how to handle a child like Amelia.  I am not a professional teacher...I am a mom and some of these recommendations are just COMMON SENSE things!  Why is it like getting an act of Congress for the school to get on board?  Here are some recommendations that she suggested:

  • Long projects should be broken into chunks with time frames for completing each chunk.
  • Ask Amelia to identify ways she would like to organize herself.
  • This one cracked me up because I SUGGESTED THIS to her teacher a number of times...but I was IGNORED:  Amelia should have one notebook in which all assignments are recorded.  The teacher should be asked to check assignments at the end of each day to insure they were recorded properly and that the necessary materials to complete the assignments are packed in her book bag.  The teacher should insure that the due date for each assignment is written at the top of each page.  No, her teacher could not be bothered with this task.  I can't even tell you how many times Amelia came home without her homework written down.  It was infuriating sometimes.
  • If needed, it can help if two copies of each textbook should be provided.  Wow, now that's rocket science!  If she forgot her book, we couldn't do her homework at all.  I'd have to call a friend to get her to take a picture of the page in the book and then text it to me!  How's that for resourcefulness?
  • Fewer problems/questions on worksheets and/or creating boxes next to each question will allow Amelia to check it off as it is answered.
  • Here's the kicker one for me:  It is perfectly reasonable and justified to give Amelia shorter class and homework assignments, just as it is reasonable to give superior students more tasks that are complicated.  I can't tell you how many times it was said to me, "Well, we can't treat her differently than any of the other students...her assignments have to be the same"....blah, blah, blah, blah.
At the end of the meeting, Dr. J. asked me about Amelia's teacher.  She said that she thought there might have been a "personality conflict" of some kind because she thought that her answers to the teachers portion of the questionnaire were particularly harsh.  I guess it just reflected her level of frustration with Amelia.  I certainly don't fault her teacher for being frustrated.  After all, I live with Amelia and I KNOW how frustrating she can be.  However, I do fault her (and the school) for not having a clue about to handle her.  That school has been in existence for 90 years!  You can't tell me that they have NEVER encountered a student like Amelia before.  For Pete's sake!

Anyway, I'd better end this post now because I am beginning to feel the heat of anger creeping up again and I want to LET THIS GO!  I can't live with the resentment that I've encountered over this.  I don't want it.  While I can't change what happened (or didn't happen) at school, I can change what happens at home.  Our attitude with Amelia can set the tone for an entire day.  We have to be more mindful of what we say to her and how we say it.  THAT is going to be my focus for the summer.  We will begin regular therapy sessions with Amelia on July 1st.  We will get a better handle on the medication situation and will work on a detailed plan for next year.   

Although it might not seem like it, I am relieved.  We know more now than we did before and we are on the right track.  I am so thankful for the friends and family that have supported us through this process.  We couldn't have done it without you!


Mary N. said...

I'm so glad you have some answers, Nancy. Sometimes just knowing that there's a name for these things is a relief and it helps to know that there are ways to make life less overwhelming for your daughter.

I hope you all enjoy the summer!

Thia said...

What a relief, that those answers came in. I know there are probably many more questions now, but you're heading in the right direction! That is such good news!

Lori said...

Nancy I am so happy to hear you have some answers and know what you are dealing with now.
I find it amazing that more assistance was not given to Amelia at her school. With my clients we are REQUIRED to make exceptions and accommodations to anyone with mental, developmental and physical disabilities. You would think in an environment where the purpose was to teach and learn that this would be paramount, the rule WITHOUT exception. I hope things go well over the summer as you can now focus on Amelia.

Judy Dudich said...

I am so happy to read this.
As always, you and your dear family are in my thoughts and prayers.
SWEET AMELIA can now have a wonderful summer; spent in the bosom of her family, learning how to handle/deal with/navigate these issues. Perhaps her instructors, at school, will be willing to read some literature (which you can provide) over the they will be ready to welcome her back in the Fall.
With that said...I am SO glad that you have been given RELIEF in knowing some of the details about Amelia's situation!

Therese R said...

So glad you have the recommendations for Amelia that will help her blossom. Have you chosen a new school for her?