Tuesday, March 1, 2016

The Waiting Game

I have not blogged in awhile because I have been waiting to see the direction this blog post would take. Weeks ago, after years of worrying, noting, therapies, teacher conferences, play dates, and daily life we decided to explore the answer to "Why are so many things difficult for E2?" This is not something we noticed over night. This is not a question that popped up a few months ago. This question has plagued us for years. Years.

Everything E2 accomplishes comes with intense patience, one on one teaching, therapy, love, and determination on her part and ours. It is exhausting. The thing that has kept all of us going is her smile and love for life and the excitement that she exudes as each milestone is met.

Deciding to get E2 "tested" was a lengthy discussion with my husband and multiple diagnosticians. I called more than one, spoke to them on the phone, listened to their questions and opinions, and then chose the one that best met our daughter's needs. We did not go through the school district as the bureaucratic red tape is beyond ridiculous and time consuming. That process also takes forever and when you are dealing with a child with delays, forever is not an option.

We chose a doctor who is a Clinical Psychology Postdoctoral Fellow. She is well educated, warm, friendly, kind and matter of fact. The testing took hours divided up into multiple days. E2 did great during this time. She cooperated, played the games, and had fun. It was not upsetting to her, she did not shows signs of stress, anxiety, or anything of that sort. E2 was happy to hang out with the Dr.

We filled out pages of questions. E2's teachers filled out pages of questions. The questionnaires and the tests were complied and evaluated.

At our parent meeting with the Dr. we reviewed pages of observations, test results, graphs, charts, and tables. We reviewed 32 pages of data. Data. Evidence. Facts.

We learned E2 has a Language Disorder and has extreme markers for ADHD with Inattentiveness. ADHD does not always mean hyper or impulsive. People sometimes call ADHD with Inattentiveness, ADD.  E2 was only diagnosed with the Language Disorder because her Dr. does not believe in labeling ADHD at her age. She did explain to us that with such extreme numbers, it would be almost impossible for E2 to not receive this additional diagnosis in a few years.
(Children get tested every 2-3 years.)

E2 has a million thoughts in her head at any given time so to push those thoughts aside and learn a new task, even talking, requires effort, determination, and hard work. It requires patience. It requires understanding.

So now what?

Now we continue speech, physical, and occupational therapy. We meet with her teachers and put accommodations into place to help E2 be successful. We teach her one on one in five minute increments. We check for understanding. We try our hardest to fulfill the seven pages of recommendations. And then we wait. We wait for the interventions to work. We wait for the connections to be made. We wait for the success to come. We are patient.

What we will not do is defend our child's diagnosis, our school choice, our parenting techniques. We will not listen when you tell us she is fine, we will not listen when you tell us what you do or do not believe in. We will not listen if you question an extremely well educated doctor's findings based on data and evidence.

We will listen to what worked for your child.
We will listen to a suggestion.
We will listen to a new idea.
We will read an article you think might be helpful.
We will listen to a loving comment.
We will listen about a school or program you think might be beneficial.

We know E2 will be 'just fine' in the long run. Her IQ (which was evaluated) allowed us to learn that E2 is smart and will find success given the correct tools and environment. While the road E2 travels might be long and bumpy, her future is bright. Her persistent personality would accept nothing less.

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