Monday, October 31, 2016

Neuropsych results

I'm way overdue, I know.
We've had some interesting past weeks just go by.

Jason lost his Aunt Sue suddenly to lung cancer earlier in the month. So sad for the entire family, and it shook things up for everyone.

My grandma had her 80th birthday party, so we've seen a lot of my side of the family lately between a recent wedding and the birthday. We've been back and forth between home towns and our home a lot the past few weeks.

The boys enjoyed an early morning of charter fishing on Lake Michigan, an autism walk for our friend Ethan, some baseball practices, swim lessons, a Green Bay Gamblers hockey game and some Halloween trick-or-treating. Jay and I had a quick weekend away in Florida to see friends and have a client review with Jason - so yes, it's been a busy October!

Jax finished up his testing with the Neuropsychologist a few weeks ago, and Jason and I met with the doctor for the results. He has been clinically diagnosed with ADHD (combined type), and he has every red flag for the learning disorder of Dysgraphia. He can't be diagnosed with Dysgraphia until mid-third grade, so we'll have him retested in that area next year if he's still having such struggles and being pulled out of the general classroom for those areas of writing and spelling. His biggest symptoms of Dysgraphia are his inability to put thought to paper for writing words or numbers, extremely bad penmanship with constantly forgetting how letters are shaped, all while having a higher than average reading level and a normal IQ. His writing and spelling are a kindergarten level and his reading is almost at a 4th grade level - see the massive disconnect?

He gets accommodations at school for all these areas already, so it was nice to have the Neuropsychologist review his IEP and tell us how well he's covered, and how unusual it is to have a school give such great accommodations pre-diagnosis.
The doc said his ADHD diagnosis was extremely clear cut without question. He struggles with going SO FAST with everything, and every small thing distracting his focus and attention.

We were given some ideas of how to help with the current issues at home and school and also given the names of some tutors to consider over the summer for Dysgraphia. I've laminated some charts for Jax to help with remembering his things from school each day and his morning routine to get out the door without 100 requests to get through every single step. I also have velcro under the kitchen table and I've sent some to school to go under Jax's desks. A sensory input for him to feel without holding onto something to distract him or ripping his fingers raw from fidgeting with them.

After sharing this information with Jax's school team, I received emails back of support and also some questions of how to further help him. His reading teacher needs ideas on how to slow down his reading and his math teacher asked if she could add an aide to scribe for him during math problems since he can do the math in his head, but he can't write it out - another Dysgraphia symptom coming out. So, it's nice to know there's so much support in that school.

We aren't going to explore medication at this time since Jax's behavior isn't impeding his academic-needs right now and the meds would suppress his already suppressed appetite - so no way. But I have no idea how to know what the future will or won't bring, so I'll always stay open to whatever is needed and best for this kid. For now, we have a bunch of natural options to explore, and tons of accommodations at school. We already do a lot of suggestions, which may be helping his behavior, so we will stay the course.

I feel an immediate defense of that subject matter since everyone tends to have such an opinion about it. I don't think opinions about it are always fair since no two kids or situations are alike, and no one else has the burden of decisions to affect the child's entire life or the environment for the rest of the family. But I guess you know what they say about people and opinions...

I'll admit... I'm totally over the non-stop constant life altering decisions for this little soul. It keeps me up at night. Did I read enough? Did I research enough options? Did I contact enough doctors? Did I communicate enough with all the people involved at school? Did I parent through the last over-tired meltdown right? Did I.. did I... did I...

((Sigh)) all we can do is love him! I'll admit that after a week to digest this info, I'm in a decent place about it all. We'll see a pediatric Neurologist next week to just review all his history with the neurological speech disorder, feeding disorder, ADHD, possible learning disorder and a few other small things. I don't assume anything will come of it, but I can go to bed at night knowing he was seen.

He's still happy, funny, charming, mostly sweet (HA) and has an awesomely amazing twin brother who may have a seat next to Jesus already with his name on it. Seriously, if you see Brady any time soon, give that kid a high five for just being such a selfless soul. He loves Jax so much, and he's already promised me to take him to college with him so he can watch over him :) Good night y'all.

Lake Michigan charter fishing

A random fall practice

Ethan's Autism Walk

Love these boys

One of grandma's celebrations

The boys watching some construction of the new Bucks stadium going up downtown

Quite a catch from our friend's back yard!

Friday, October 7, 2016


I swear the weeks are just flying by lately.

The boys received their first bibles at church a couple weeks ago. They're a children's version, so they can read them easier. Brady has been reading from it a few nights a week, he really likes the stories in 'Luke'.
We spent 3 nights back home last week for a wedding for my cousin. My brother and aunt/uncle flew in, so we had a lot of family together. Another uncle flies in next weekend for my grandma's 80th birthday, so we'll have another day with family coming up.

Jax is currently in the evaluation-process with the Neuropsychologist. Jay and I had an interview with the doctor and she got to meet Jax. He will have a full day of testing this coming Tuesday and we should have results at a meeting set for the 25th of this month. I've been digging back for school reports/IEPs and had tons of paperwork completed from Jax's teachers, myself and also signed off for medical records to be reviewed. We know Jax has a lot of struggles and accommodations at school, but if any of it is actually part of a clinical diagnosis is yet to be seen. Jay and I agreed that if something is found or not, we at least know we have done everything to try and help.

In other news, our world is coming to a halt. Jay and I were going to attend a gala in Madison this weekend for children with special needs, but unfortunately there's a crisis happening in his family this week. One of Jay's aunts had a stroke last week and was hospitalized. While there, they realized she has terminal lung cancer and was put into hospice pretty immediate. We got the call while driving home from Green Bay last weekend, so we turned around and went straight to the hospital to see her. Thankfully she was able to see the boys and we were able to talk with her.  Jason has gone back up today to see her again and to offer support to his cousin. Please pray for the family in this difficult time. It's an extremely helpless feeling...

Jay's cousin and his wife visited for a night while playing a charity softball tournament.

Brady refused a photo for some reason.

But as usual, Jax was loud and proud!

My cousin's wedding

My brother is pretty much like the boys...
My brother and niece!

Brunch with some family on the way out of town.

These kids...

These boys...