Tag Archives: neurology

Old pictures and updates…

10 Mar

Found this today.. This is Alex and me. Just before his 1st birthday, he was admitted to Children’s Hospital in Boston for every neurological test except the one the doctor wanted him admitted for (an MRI).  The cribs are solid steel and built like tanks. The nurse told me I could climb in if I wanted to…So I did.

Bek & Lexo the Great (2004)

Bek & Lexo the Great (2004) *click for all blog entries about Alex...*

Anyway, I love this picture and so does Alex and I just felt like sharing on this sleepy Tuesday night. (Can you believe how big he has gotten? Can you believe that his head is now only a couple of centimeters smaller than mine? And mine is in the >98% to begin with!)

For those of you that are curious, we still don’t have results on my MRI from last Monday (yes, it has been almost 9 days. We were supposed to have the report within 24-48 hours.  The neurologist’s office finds this odd as well but hopefully the radiology peeps are just reading and rereading it and writing a thorough report).  I am still having the jello legs/weakness thing and the arm thing. I’ll post when we have more info.  Needless to say I am steering clear of power tools for the time being, but never fear! I have quite a few pieces in my arsenal that you have not seen yet! So I will be posting those and also planning for a “Move us the heck out of Florida to anywhere with an increased likelihood of Jeff finding a job and more options to help Alex rock even more Fund” grab-bag/mystery sachet/container o’surprises thingeroo fundraiser in the near future… So keep those eyeballs on this space and keep your fingers crossed that we get some sort of an answer soon so we can get back to whatever it is we do here.

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Hugs all around,

xo

Bek

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Quiet….

18 Oct

It’s quiet… The stress of this week, the fight or flight response of Tuesday’s meeting with the school district, has mellowed a bit…

We are not pulling kiddo from his school until we have a better plan in place.  I feel like we were blindsided and given no time to gather people and information as the test results came in and BAM! same meeting we were writing the IEP- with really no idea of what we could include…

So we are on a little mental vacation from planning and researching a change.  Instead I have been strategizing on how to reach kiddo and the three of us have been working together to plan how to help him in the immediate future.  It’s frustrating.  He is overwhelmed, but also relieved…  He told me he was worried about school.

He said, “I fit in.”

I think he fits in right now the way that someone in camo fits in with the forest…I think he blends enough that some of the kids accept him.  If he feels that he fits in then I am so happy about that.  I never had that feeling of fitting in as a kid- not even with my family, immediate or extended, and I struggle with it as an adult, but for the most part I have my tribe. I am loved and I love. And I love that Alex feels loved by the kids at school, even with the constant struggles and the huge differences.  I love that they take him by the hand and sit him down and even though he is often looking off into space (or at the fire sprinklers or ceiling fan), they treat him as an active participant…  When I pick him up from school the kids tell him that I am there and on occasion this one girl who Alex adores will help him clean up his space and remind him to bring his lunchbag to me, at the door to the classroom… She will hold his hand and lead him to me.  Sometimes I get progress reports.  It’s amazing the differences between the two, and he is 5 and she will be 4 soon and there are similarities, but it’s the differences that are so beautiful and startling and it is this difference between Alex and the other kids that keeps him safe in many ways, at least for now.  At least until they start noticing differences as a negative thing.  It happens. It is life. We have so much work to do and what a rollercoaster we are on…

But I wouldn’t trade this experience for the world…

Update on neuro

3 Mar

Just a quick and brief update…

Looks like pretty bad ADHD (don’t worry anyone, nobody is jumping the gun and medicating the kiddo. With our family medical history we know better) combined with Sensory Integration Disorder and higher language issues, low tone, and poor fine motor skills. Of course, all of these things play off of each other and everything needs attention…

Working on strategies to work on structure and impulse control….

Doc suggested putting boy-o in the public school system where he will be better supported… I agree that he may need a change in school environment/structure in regards to learning with ADHD and not having it be such a mix of “he sat still and learned today” and “he needs to work on his listening/he doesn’t listen” (which seem to be the two brands of report that I get when I pick him up). Maybe that structure is a trial run of more days at school because it seems like the minute he settles down (in his 3 mornings a week) it’s the weekend again…. I understand that public school might be a better fit and better support and it might be more of a no-brainer if we still lived up north. But we don’t. We live in Florida where corporal punishment (physical paddling…rationing of bathroom use…physical restraint) is permitted according to state given teacher rights and those rights offer too much personal interpretation and gray area for me to be comfortable sending my kiddo into that environment without a ton and a half more research and trying out a few more things before we make that big change. I realize not every teacher paddles or believes it is a positive approach to managing behavior in the classroom, but in our county it is allowed….I have lots of what ifs these days…What if a sub comes in for the day and thinks paddling is the only way to deal with a child who can’t sit still or won’t stop talking a mile a minute and can’t stop disrupting his peers? That one person could do a whole lot of damage to my kid, and I’m not willing to take that risk especially before exhausting all other avenues.

Not deciding anything overnight. Not when it comes to my kiddo.

Especially with this. Especially because I have fairly difficult to manage ADD, and I have been through the medical wringer. I ‘m more than a little wary of doctors and other medical professionals making snap judgements based on one little trait…I’m more than a little exhausted from staying on my toes as far as my reasoning goes and being aware that some things can be helped by medicine and need medicine, but not until all other avenues have been exhausted. In our situation that means creating structure at home and in school and working on the kiddo’s other areas that need improvement….

Updates to come… For now I have a whole bunch of organizing of pretty much every part of our lives. Not easy for as our lives have been pretty much an endless series of “survival” modes since I became pregnant with my little guy long ago. Medical and family and financial and work emergencies have kept us moving, but haven’t helped with taming our environment. So that is what we are working on now, so we can have a cleaner canvas to build upon.

Semi-break….

2 Mar

For those of you that don’t know, I am taking a brief break from making custom pieces… My shop is still open, I’m still shipping, but I needed some much needed meditation time… It’s hard. I want to make stuff. I need to make stuff. But I’m pulled elsewhere.  Perhaps all of this time away will refuel my creative tank and I’ll be able to play again… Lots of things are going on in clever-land…  The occupant of much of my brain and heart-space is, of course, my little guy… Tomorrow we head to the new neurologist, as recommended by his occupational therapist, to discuss some of the flags she has seen, and of course, that we have seen.  When she first mentioned the idea of making an appointment she also suggested writing down all of the “quirks” that our guy has.  So for the past month and a half, while waiting for our appointment to come up, I have been looking at my kiddo, and myself, with a magnifying glass that is perhaps too strong.   I spent this past week crying every time he did something that isn’t typical of a regular kid.   I am realizing, with every magnified step that if there was doubt that he is different (and I’m not talking different as in wonderful different- I’m talking about the kind of different where it is hard for him to function in the world just as he is -different)  that doubt has vanished. Part of me dug my heels in today about going to the initial consultation tomorrow.   It’s like folks who dwell in denial- if you don’t go to the doctor than nothing is wrong.  Of course we are going.  Of course going tomorrow doesn’t change anything for the negative.  Going tomorrow is not going to make my little guy different (for lack of a better word). It’s not going to brand him with an affliction.  The only thing that can happen is that we will learn something and be given a giant spotlight instead of the miniature magnifying glass to help us find the tools that can help all of us.   I’m also reminded of when the early intervention folks came for the evaluation almost 3.5 years ago, for his gross motor delays – his pediatrician and neurologist and stay in the hospital and testing had all asked about the things that he didn’t/couldn’t do.  The early intervention social worker asked me “What is he good at?”  and I was floored.  Surely he was good at many things. But we had already been trained to look at the solid negative evidence in front of us and not see the sun breaking free of the clouds.  I’ve kept that lesson- to see the light even when being told to describe only the darkness- because you can, with so many variables have one without the other if you forget to see it all. Anyway, tomorrow we will go and hopefully it will be the beginning of a journey for our family where we will all have the tools to have more good days together.So this is what I’m focusing on… Well, this and reorganizing every bit of anything in our home and my studio so that there will be less distraction for all of us and we can work on having a bit more structure.   My kiddo tends to be pretty black and white about everything and hubby and I tend to be more grey-area, less structured, more artistic….We are trying to find a happy medium…. Hugs all around.  And for the love of pete if someone could tell me why none of my formatting is keeping please please please let me know… :-)

International Ataxia Awareness Day

25 Sep

Today is International Ataxia Awareness Day.

Never heard of Ataxia? I had never heard of it either, until I met Auntie Patti.

Ataxia is a slow moving and unstoppable thief.

As a bystander, you feel powerless.

We aren’t totally powerless.

Please take 5 minutes today to read up here:

Ataxia Fact Sheet

Ataxia.org

Wikipedia’s easily digestible info on Ataxia is here:

http://en.wikipedia.org/wiki/Ataxia

Sadly and tragically, Auntie Patti passed away a week ago today. To promote and assist further research please consider a donation to the National Ataxia Foundation are appreciated – if you would like to make a donation of any size you may do so here

(if you do donate please select “research giving” and “sporadic ataxia” in the drop down menu… Please consider donating in memory of Patricia Benyo. Thank you.)

*hugs*

B

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