Distance Learning Day 4

Long story...  but many prayers were answered today.  Maddie had a great day.  This momma is going to bed with a very happy heart.  

Distance Learning Day Three

 

While the purpose of this blog is to document what is going well and what is not going well with Madison's distance learning so I have something to refer to when I call her next IEP, today's blog is just more of a "woah is me blog".  🤪

I wasn't able to really monitor what happened during her classes, as I was in a five hour virtual staff meeting during most of the hours Madison was "at school".  

This was my morning:

In front of me, lots of computers and lots of beverages:

Behind me, rockin' the screen room divider I just purchased so I can pretend that everything behind me is not complete chaos while I am zooming. 😂

And WAY behind me - this adorable chick:

I kind of feel like this is an era of smoke and mirrors and I don't like it one bit.  (But I do love my room divider!)

I basically just hopped in and out of my meeting so I could get Madison logged into each of her classes and cross my fingers she didn't do anything too wild.  And of course, this was they day her school was on "minimum day schedule"; so she had a new class every half hour.  This whole block schedule, A-B day thing (except on Wednesdays of course) is ridiculous.  In my humble opinion.

The good news....  Besides a bit of a glitch during first period, there were pretty much no technical difficulties (that I'm aware of).  That's impressive.

Taking a break in between classes:

The bright spot of our day was that her amazing friend Ciara came over around 11, took her to get some lunch, and got her logged in to her last class.  

Apparently Madison needed some lipstick on for 7th period (her teacher thought she had a nose bleed😆):

Then Ciara took Madison to go visit her dog and even brought the dog back home with Madison!

So really not a lot of info. I could give to her IEP team, but at least I got some fun pics!  I'm not really sure how I am going to keep up with this blog and truly document everything that is going on with each class, but at least I have the first three days on record.  😉

As I start to see everyone else's adorable "first day of school" pics, I am just filled with so much sadness for everyone.  I can't believe this has happened.  It's truly terrible.  I see you all working so hard trying to make this work and trying to remain positive, and I admire you.

Distance Learning Day Two

Madison woke up at 6:00.  It was a long stretch between 6 and 9:15 until her first class.  
Derek and Savannah were both gone by 7:00, so Maddie and I were on our own today....

9:15-10:35:  Period 4, Horticulture.  This is the class Madison is typically mainstreamed into.  It requires a lot of support to participate, but it is her FAVORITE class and it is her FAVORITE teacher.  IRL, this is an incredible, wonderful class.  She woke up very excited to see Mrs. Miguel.  Not sure how they are going to be able to garden virtually, but knowing this very clever teacher, she will figure something out!

9:15-9:30:  Teacher was not in class, BUT, permissions were not set properly, and all kids were allowed in unattended.  Madison saw one of her classmates in class and kept repeating his name and asking him about his dogs, and then another kid yelled at her to stop talking and repeating herself.   She can mute and unmute herself independently, but it’s not always appropriately. Of course, after hearing someone yell at her, I intervened and made sure she was muted.  Please note, I am letting Madison have at it independently so I can explain what type of support and help she needs and to demonstrate that she can’t participate in virtual learning independently or in a meaningful way.  Her one-on-one does not yet have access to any of Madison's online classes, so she can not offer any support yet. 
Teacher arrived around 9:30 and was adorable. She took the kids on a tour of the school’s garden.  😊 They were online together for about a half hour and then the teacher told them they have some independent work to do posted on Schoology.  I’ll be interested you see what that entails.  I haven’t even attempted to check.

A few small tantrums at this point today, but nothing compared to yesterday.

10:45-11:45:  Lunch. I told Maddie we could bring one of her dear friends some lunch and they could hang out for a little bit.  THAT made her very happy. 

AND she got to hold this adorable pup!!!
Thank you, Ciara!!!

11:45-1:05 - 6th Period PE.  We rushed back home from Ciara’s to get Madison logged into PE.  She was SUPER EXCITED at the prospect of seeing her beloved PE teacher online.  But there was no “classroom” to enter...  No where to click or log into.  After getting super frustrated (but no tantrum), I told Madison to take a break and I’d figure out what was going on. Let’s imagine this in a traditional setting.  All the kids show up to class, but the door is locked and no teacher arrives.  The students are just stuck outside and no administrator shows up to tell them what is going on.  Weird.
Come to find out (I only found out through some digging)...  that beloved PE teacher is no longer her teacher.  There is a new fella who “might” start classes next week.  Not that I have much hope for an online Adapted PE class (are you KIDDING ME?), but at least Madison would get a kick out if seeing her “people”.

1:10-2:30:  7th period, back to Madison’s LLH “homeroom” class.  This is supposed to be her math class, but come to find out, it is actually health and science.  🤔 So at this point, Madison doesn’t even have math on her schedule.  This was another getting-to-know-the-technology period.  Students practiced muting and unmuting themselves.  Class was over at 2:00.

Another bright spot in our day was a fun after swim at our amazing neighbor’s house. (PE: check!)  SO nice to get this kid out of the house and away from a screen.  Thank you Kim!

Oh yessss girl!  Livin’ it up!

So my conclusion after today... too tired to really put it in words, but feeling pretty hopeless.  I do have some people waiting in the wings to come in and help us, but I wanted to get a feel for what this all “looked” like before I started arranging all of that.  

Again, the efforts of all involved are not going unnoticed.  Everyone is trying SO HARD.  But if you are not given the proper training and teaching online is just not your thing, we can’t call that education.  And that is not the teacher's fault.

 
And really, this is just so sad for all involved.  

Distance Learning Day One

 I am attempting to journal Madison's "Distance Learning" Experience.  Some of this is just for kicks and memories, but I have also been advised to document this experience from a Special Ed advocate.  I can't complain that it TOTALLY DOESN'T WORK without documentation.  So while this should probably be private, putting it on this public blog might encourage me to keep up with it.  And if I get a little help and encouragement from all of you, that might be helpful too.  ;-)

Please understand...  The incredible effort of the district and teachers is not going unnoticed.  I am SO IMPRESSED and have a huge appreciation of what educators are attempting to pull off  at this moment in history.  And regardless of my personal views on COVID and the unanticipated mental health and developmental issues that our "shelter in place" are causing, I am in awe of the creativity of our society, our businesses, and our education system.  However, I do have a strong opinion on how our Special Ed students should be handled during all of this.  It would be SO easy to accommodate these students with in-person learning with proper social distancing, masks, blah blah blah.  But the districts' hands are tied because of the mandates set forth by the state and the teacher's union is not helping ONE BIT.

And all that being said... Regardless of what I say below, I am trying my VERY VERY hardest to remain positive in front of Madison.  I am trying to help her see the silver lining in all of this (School in your pajamas!  I don't have to do your hair!  I don't have to put your leg braces on!, etc.)  So I am waking up with a smile and putting my best face forward for this girl.  Promise.

So here goes.

Day 1

8:30:  Log on to the "District Kickoff".  Why a district of 30,000 students thought that their systems could handle all 30,000 students logging on simultaneously at a very specific time would work is beyond me.  Maddie was super excited for her day.  But this is what we were greeted with:

Thus...  Temper Tantrum #1:

Tantrum ensued, and I got an unexpected apology around 9:00.  That was good, as first period was scheduled to start at 9:15.

Here is Maddie's schedule, just for reference.  You might be slightly confused by it.  Maddie is totally on board with it.  😂

9:15-10:35:  Period one.  (Yes, they are running 80 minute block schedule periods)  All student's mics were on, things were a bit out of control, but Maddie was happy to see her teacher.  But there was a lot of squealing on Maddie's part.  I tried to mute her, even though the teacher wanted her mic on, thus...  temper tantrum #2:

This was kind of a work-out-the kinks 80 minutes.  I don't remember the timing of or context of temper tantrum three, but this one was solid:

10:45-11:45:  Lunch Break.   Good thing Savannah was home...   I had to facilitate a parent orientation for my school via Zoom from 10:45 - 1:00.  She took solid care of Madison during this time, and I am SO grateful for her help!!!

11:45-1:05:  Period 2.  I was still unavailable to supervise, but Savannah got Madison logged on to 2nd period.  I'm not quite sure how this went; I just heard a lot of squealing.  Cute, but not appropriate and not easily controlled.

1:10-2:30:  Period 3.  New reading teacher for Madison, but she knew of him and was SUPER excited to see him.  But, his video wasn't working and she was super bummed she couldn't ACTUALLY see him.  He went over some basics and some rules, and explained some things about printing work out and submitting work on google docs.  That is not something that is in Madison's wheel house right now.  We'll figure this out, but she is only able to participate in this class because of some pretty solid modifications that I haven't been schooled on yet.

I tried to sneak some video of her during this time.  She wasn't thrilled about that.  😆

So, all in all, the day wasn't TERRIBLE...  The potential for learning is SLIM, but I will try to keep an open mind.

It's important to understand, that because of Madison's very unique educational needs, she has a one-on-one paraprofessional assigned to her throughout her entire school day.  She can not access her curriculum, her learning, her accommodations, etc. without this very unique support which we are incredibly grateful for.  This support has not even been addressed for "distance learning".  We have no understanding of how this support will be delivered to Madison during this unique time.  But we DO know that paraprofessionals ARE reporting to work each day, but we have not heard how their paid work at the schools will benefit students like Madison.

But on an incredibly positive note...  Madison received a visit from a VERY special visitor who took her for a drive for a special treat, hung out with her at home, and styled her hair.  THIS kind of stuff is what is going to get us through.

And just for a little perspective and to put a little salt in the wound, THIS was Madison's first day of school last year:

So sad.  What a difference a year makes.

I trust you, Madison

Once upon a time, in a small town in Texas, the beautiful Marika Kalanges showed true faith in Madison's ability to walk when she told Madison to take her beloved Hedgehog, Shuni, for a walk.  Down the street.  On concrete.

Marika probably doesn't know how significant that moment was for Madison and me.  Madison took that Hedge Hog for a walk and Madison did not fall down.  The trust that Marika gave to Madison that day was the most incredible motivation I have ever seen.  That moment, I realized I needed to have more faith in Madison's abilities.  Marika's biggest gift to me was handing me that faith.  In the form of a Hedge Hog, no less.

Often, I hear Marika's beautiful Hungarian voice in my head saying, "I trust you, Madison".  And when I hear this voice, it gives me the confidence to let Madison try something new and challenging.

So......

Yesterday, when we got home from Costco, Madison asked if she could carry the eggs in. (Please cringe right now.)   The initial response in my head was, "NO WAY, are you crazy?"  But then I heard that Hungarian voice in my head and said, "Sure, I trust you Madison and I know you can do it."  Well, Madison started to carry the eggs but realized it just might not work out so she quickly turned around and "put" the eggs back on the car seat.  Just one egg cracked, but she didn't notice.  It's truly amazing what just one egg can do on a leather seat.  I took a deep breath and didn't let Madison know that an egg cracked.

So while I was cleaning up the slimy poultry...  Madison got herself into the house through the garage, stepped in the cat's water bowl, got 10 paper towels down to wipe up the water, decided to empty the pencil sharpener (???), got pencil shavings all over her pants so she changed her pants, went into the kitchen to get some water, but accidentally dropped the cup, and got 10 paper towels down to wipe up the water.

I just realized that really sounded like "If You Give a Mouse a Cookie".

This all happened in about five minutes.

So while the Hungarian voice in my head did not lead to Madison successfully walking eggs into the house, it did give us so many other successes.  Madison independently got herself into the house.  She cleaned up after herself.  She changed her clothes by herself.  And she had the confidence to get herself a cup of water.

I was pretty wiped out after cleaning up after Madison cleaning up after herself, but so very, very grateful!!!  Marika's faith has been a gift to our whole family and we will be forever thankful.

kerigustafson.tripod.com

5,667 Beautiful Happy Genes

And the news is…  There is absolutely no news!   The results are in and Madison continues to be a medical mystery.   

For those of you who don’t know, Madison was diagnosed with “Cerebral Palsy” simply because the doctors don’t know what else to call her “condition”.  Because of this, she is always the first to take any new tests that are developed that might give us more answers.  We are in a very exciting time in the world of genetics (or so I’ve been told), and the technology that has been developed over Madison’s lifetime is fascinating.

She did her first human genome DNA Microarray test when she was about two.  It was the latest and greatest at the time.  She’s done several since then.   They have never yielded an answer.  As they continue to fine tune these tests,  we are always given hope that we might finally get an answer.   This last year, there was a new latest and greatest test and we really did have some solid hope that we might get an answer.  In fact, 50% of all undiagnosed cases are getting a diagnosis with this new test!  This last test was able to test 5,667 genes.  In the world of genetics, this is incredible (or so I’ve been told.)   We did blood work for this test last spring, and just now got the results.  If any of these genes were mutated or abnormal in anyway, it might help us understand Madison better.  It might indicate a particular disease or condition. 

But alas…  Madison has 5,667 beautiful genes with no abnormalities!  There were a few “markers”, but they don’t match Madison’s symptoms, so they are deemed irrelevant.  This could be considered great news – some of those mutations are indicators of some terrible things.  It is only bad news because our hopes were a bit dashed at finally getting an answer.

So what does this mean?  Nothing, really.   A diagnosis is not going to change Madison’s life in any way.  If she does have a genetic disease/disorder, it’s not like anything can be done to “fix” it.  And we are not  in the business of “fixing” Madison anyway!  But we do want to do all that we can to make sure she is living the fullest life possible and that we are giving her all of the opportunities and help she might need.  A diagnosis would help us plan a bit more for the future.  And darn it, it would just be nice to solve this mystery.

So we shall continue to take pride that our girl is, indeed, one special gal.  There (really, truly) is no one like her in the whole wide world.  J  We will continue to thank God for blessing us with this beautiful, amazing,  spunky child, and be appreciative of all of this new technology that perhaps, someday, may give us an answer.

http://kerigustafson.tripod.com/

Refreshed Hope: Arizona, 2016

I am sitting in a hotel room in Peoria, Arizona, experiencing my first Monsoon and watching an amazing lightning/wind/dust storm while Madison is soundly asleep next to me after a week of intense therapy.  I will always marvel at the situations I wind up in because of this little wonder.

Before I explain this week of therapy, I have to reflect back and figure out what brought us here....

It’s been a tough couple of years.  My Facebook posts might not reflect that, as I do tend to paint with a very positive brush!

The last intensive therapy I did with Madison was in Texas two years ago.   It was an AMAZING experience.   Madison did such incredible things, and we still felt so much hope, excitement, and potential.  Madison was walking entire city blocks unassisted.  If she fell down, she got right back up again and continued walking.  We have the most amazing videos of this time…  http://madisongustafson.blogspot.com/2014/07/madison-is-super-star.html

Then we got home.

It was a tough year.  Madison was frustrated and unmotivated.  We couldn’t reinforce anything we learned in Texas.  She got sick.  We could never figure out why, but she threw up all the time and our focus transferred to that.  We could no longer fret about her walking, talking, and standing when we were dealing with daily vomiting.  The doctors had no idea what was happening and could only say it must be related to her so-called “Cerebral Palsy”.

We saw a nutritionist who said Madison’s diet was fine.  Lol.  I knew it was not, but was eager to accept that particular opinion.  We sought after an “alternative” nutritionist.  She was (is) amazing, but I will never feel like we can live up to her expectations.  (6-8 supplements a day, no sugar, all vegetable/lean protein diet.)  The only way we can get supplements in Madison’s body is through chocolate pudding.  For some reason, the nutritionist doesn’t like that… ;-)    Though we will never do what this amazing nutritionist expects, we try VERY hard and Madison is no longer throwing up every day.  That is a good thing.

And then Madison grew.  A LOT. And then she grew some more. She grew so much she could no longer walk or stand.  She just can't figure out how to balance this new, very long body.  She has finally realized that the falls hurt.  She gave up on walking, just like those stupid doctors said she would.

And then there were the "seizures"...  That's just a whole other story...

So through severe behavior issues, HORMONES, incredible growth, medical issues, poor nutrition, sketchy educational experiences, and a plethora of other things, we have meddled through the last few years.

We didn’t think we had the funds to afford anymore “intensive” therapy, and had become skeptical of the long term benefits of all the therapy we had been providing Madison over the last ten years.

However…  Some dear friends of ours had been researching alternative therapies, and discovered an incredibly affordable “movement specialist” in Arizona.  We had exposed Madison to a similar type of therapy many years ago, and it was amazing. (http://kerigustafson.tripod.com/id28.html) But it was SOOO expensive.  $150/hour expensive.  We drove to the Bay Area for over a year and paid SO much money.   Madison experienced a few vague, though significant results, but not enough to warrant the continued travel and expense.  With all of this experience behind us, it was very motivating to think about this therapist in Arizona who made it her life’s work to make this type therapy affordable.  Affordable, as in $500 for an entire week of therapy.   How could we not try it?
http://www.movementlesson.com/home.html

It was a great week.  This therapy is different.  But it’s amazing.  It is something that begins with no goals.  (Which is CRAZY, because everything in Madison’s life is goal-oriented.)  This amazing movement specialist, Michelle, did not want all of the history; she just wanted to begin to “work” on Madison.  It is a very gentle therapy. Basically, it looked like Madison was getting a fantastic light message twice a day every day this week.   It looks like it is passive, but once you understand it, you realize it is actually a lot of work.    

So I watched.  I watched Michelle's talented hands, and I watched Madison’s body with new eyes.

The first day, I watched Madison’s feet contort into crazy positions, as they always do.  I saw her crash down from the therapy table to the floor in a way I am SO used to. I watched her play with Duplex legos in her very typical, disorganized way.  (Slamming a few pieces together, ten more pieces dropping on the floor, and her not paying much attention to any of it…)  I heard her tell me “hi” and “I love you” over 100 times within the first 15 minutes.  (So sweet, I know, but….)

The last day (today), I watched Madison’s feet flat on the floor as she calmly built a 20 piece tower with the legos.  I heard her tell me “hi” only once and “I love you” only two times.  I saw a calmness in her body I haven’t ever really seen.  When I helped her get ready for bed this evening, I felt her stand up for me like she hasn’t done in over a year.  Something has definitely changed in this girl!

I met a beautiful mom from Washington DC who ended up moving to Arizona so she could study under Michelle because it is the only thing that is helping her daughter.  I met a blind girl with CP whose family moved here from Hong Kong so she could receive this therapy.  The fact that I drove all the way from California was like no big deal in this world.

Will it “stick”?  Only time will tell.  Madison's body was introduced to new ways of moving that her brain really liked.  (Or perhaps I should say Madison's BRAIN was introduced to new ways of moving that her BODY really liked; I'm still trying to figure out how it all works!) I do believe her body will remember many of the things it learned this week.  Have I seen all that has been accomplished this week?  Probably not.  I can’t wait to get back home into our regular environment and see how Madison’s body reacts and what she might be capable of now…  

Are we done?  Of course not.  Can we afford to spend a week in Arizona every 6 months?  Probably not.  (But Michelle travels, and I might try to concoct a way to get her local a few times a year with other students!)

But one of the most valuable things this week has given us…  Refreshed hope.  It gave me beautiful time with Madison to remember how incredible she is.  And it made me realize that we can NOT give up.  She still has so much to learn and she is so incredibly capable.  We still have time to prove those doctors wrong!

While Madison struggles with things most of us take for granted such as walking and talking, she has gifts many of us could only dream of.  She lights up a room.  She makes the most unlikely people smile with her charm.  She makes friends WHEREVER she goes.  (I do believe that Rosanne, the hotel manager, will now be a lifelong friend!)  I am so grateful for this opportunity to look at Madison with fresh eyes and for being able to step back and remember HOW hard she has to work to do just about everything.  I needed that.  It has been so incredibly challenging living with and being mom to this frustrated little gal these last few years.

As we journey back home, I am excited.  Sometimes it is hard to understand the path and plan that God has for us.  I have been working on trusting that path even without always understanding it. We are in His good hands!  We will begin this new school year (middle school for this girl!) with calmness and hope.  I am so thankful.

A good video explaining more about this therapy:  http://www.movementlesson.com/exceptional-family-tv.html

To go back to Madison's original website, click here:  kerigustafson.tripod.com

Here are some pictures of Madison working with Michelle.  They clicked.  Michelle definitely "got" Madison.  It was so fun to watch.

And between therapy, we had to entertain ourselves somehow...

Something Madison has never been able to tolerate before - a WHOLE movie.  We had so much fun watching Finding Dory!

 Maddie's new BFF Rosanne.  <3

 We found the trick to beating the Arizona heat.  Malls!  We walked around a lot of malls.  This sweet gal gave Maddie a little makeover. 

 Maddie wiped out after her first day of Movement Lessons.

 Day Two - We went to the zoo.  In the middle of the desert.  It was only 112 degrees.  Not a great idea, but Maddie had SO much fun!

Visiting the aquarium.

Eating dinner with the sharks!