Everyday is a gift

December 6, 2015 § Leave a comment

Our family seems to live with perpetual stress. Not just the regular day to day stress of raising a family working and going to grad school full time, we also are rasing a daughter with significant needs and living with a parent who has stage 4 cancer.  

Honestly, we are used to the stress of the disability and the cancer even with all the bumps in the road that both bring.  But two weeks ago we didn’t just have a bump in the road, we hit a sink hole! A big sink hole I thought we would never get out of. We almost lost my mom from complications with Chemotherapy.

We are not niaeve we know what cancer, especially stage 4, means but this just happened so quickly and so unexpectedly it blew our minds.

I am an only child and my parents put a beautiful in-law addition on our house shortly after my moms diagnosis. Living all together under one roof has been a dream.  We have all spent so many happy days together. Our favorite time is sitting on the screen porch watching the world go by and talking for hours until the fire flies come out.

My dad and I supported each other and my mom through this horrible time two weeks ago. Watching his love for her is ingrained in my brain forever – it is one of the most beautiful things I have ever seen. I get tears in my eyes just thinking about it.

But as it turns out my mom is strong, tough and resilient!  She made it through and is home with us.  We have two weeks before she starts her new chemo, right before Christmas.  I admit I was selfishly disappointed at first. I was mad that I didn’t get to celebrate Thanksgiving the way I wanted to with my mother and now potentially Christmas would be ruined by the Chemo treatment too.  Until I just STOPPED, until I remembered  those dark few days in the hospital when I pleaded with God not to let my mother suffer and to just let me see her smile again.  And that’s what made me stop.  I just realized I got what I asked for, God answers my prayers – I can’t waste it always wanting more! I have to enjoy every minute, hold her hand, soak in her smile and laugh with her as much as possible. And the more I think about it I know how important the everyday is – not just the holidays but all the regular ol days in between – those are the days that are magical. 

I am feeling blessed and hopeful this Christmas. I am grateful for my faith and my family. 

Through the use of technology we can give children voices and autonomy in the classroom, also allow them to develop confidence, access the curriculum and be seen in a new light by their peers.

August 16, 2015 § Leave a comment

As a special education teacher and soon to be technology specialist I like to look at what having high tech solutions look and feel like to all team members involved.

Technology when used correctly with all parties, well trained and on board can create a way for students to cross bridges that allow them to access curriculum and participte in ways that were inaccessible before.

Watching children who can not use their voice to speak  instead use an augmentitive communication device to participate in class is a game changer for that child. It puts them on an even playing field as their classmates.

But it’s not that simple you see, so much goes into making sure that moment is successful.

1.  Both the teacher, specialist and child must be fluid with using the device.

2. The child should practice using the device with the specialist and teacher in the same fashion and with the same types of questions used into the classroom. Practice leads to success.

3.  The first few instances of practicing in the classroom should be coordinated between the teacher specialist and child.  A simple wink from the specialist so the teacher calls next in that student to answer a practiced question is discrete and helps the child build autonomy.  It also begins to show classroom peers that the nonverbal child does truly have a voice all their own.

4. Practices like these above become built on during the introductory stages but as all team members become experts more organic and spontaneous interactions begin to happen. That’s when things become breathtakingly cool!

But what about the teacher who doesn’t have time to “deal” or who sees it as the specialist job?   Hey, it’s true that teacher is busy and learning how to do this probably was not part of the deal that they had in mind. It becomes one more thing on their plate that is super difficult to get to.  

How does it feel for the child to be using the one with the device?  I am unsure.   I imagine their feelings change with age.   It’s cool at first when they are little, but iver time the novelty wears off.  I bet when a button gets stuck and they say the word over and over its really embarrassing.  I bet when they have something to say and that language hasn’t been properly programmed in its super frustrating!

So as you see this effort for everyone to feel successful must be collaborative. It must involve extra planning time, communication in advance about upcoming curriculum and what is salient to learn for that child.  It can be done – I’ve done it! It can work!

What about the student who used technology for organization, writing, research and to foster executive function skills?  At this level kids are usually a bit older – sometimes resistent because they want to be the same as everyone else. This is a problem in which the teacher can be a huge help.  Teaching the child to feel proud to be using the correct tools opens up another avenue for universal design and self-discovery in the class room where every child learns about which particular tools they need to be successful.  It’s a great opportunity for discussion that everyone uses/gets what they need to learn.

This type of technology in the older set requires more than just encouragement and support – it requires direct instruction for the student using the device .  It requires that the child’s team is all trained and fluid with using the same programs the child is using.  

On several occasions I’ve seen a scribe used for my daughter instead of her typing her own work simply because the paraprofessional  couldn’t be bothered with helping her access the program correctly or didn’t know how.  In that one moment when a decision like that is made you take away a child’s autonomy. You damage their confidence and you send a message that it’s just too much work to do it that way. It sends a message that the technology is a bother and I’m pretty sure that would make any child feel bad.

As educators we MUST be dedicated to the use of technology for our students who need it to access all parts of their school day. Yes, it’s an extra responsibility that you didn’t plan for but the reward from the successes are grand and fulfilling!!

Giving children voices and autonomy in the classroom, allows them to develop confidence, access the curriculum and be seen as equals by their peers.

Technology is the great equalizer when used properly!

She didn’t even know how powerful the words were…

August 6, 2015 § Leave a comment

The past couple of weeks I have been joining my very good friend to go see a personal trainer.

There is a whole back story about how I knew this trainer years ago.  She is the reason I started my love affair with yoga and eventually started teaching.

10 years ago after Arianna was diagnosed I struggled emotionally in ways that I choose to try to forget.  The impact of learning that your child is “different”, will struggle and that there’s not much you can do about it is devastating.  (Although 10 years later I feel completely different and believe her diagnosis/disability has been a gift for us all to learn many things and mostly she brings conatant joy!)   In the “dark days” I couldn’t relax.  I had so many emotions, fear, anger, anxiety – the list goes on.  I kept seeking relief through exercise – I ran – I ran like I was being chased by a tiger! And while I was running if no one was around I would scream – primal screams!  It felt good but winter came quickly and I had to find a new outlet.  I was tired and thought I would try yoga because “it would be easy, right?”  HA!! Enter the amazing trainer – who is also an amazing yoga teacher.  I had entered power yoga. We must have done 100 Sun Salutations that first day.  I had to pay attention to keep the flow, I had to abandon my thoughts to stay on pace with the class and listen – “inhale, exhale…” Oh yeah and it made me breathe – I think I had been holding my breath for months!  At the end of the first class we of course ended with shirvasana and for the first time ever since “D day” I relaxed. The minute I did, lying there in a pile of sweat on a borrowed mat, I began to cry!  In front of everyone the tears just kept rolling down my face – I had found my release.

It wasn’t long before I practiced yoga all the time and pursued my certification.  I had left teaching at the school and found a way  to combine my two passions – special education and yoga. I created a business called yoga adaptations and taught yoga to people with a multitude of disabilities.  It was an amazing experience.

Three years later, I got a call from my current job. They were looking for a Special Edication Teacher.  With the stress of the new job my yoga business and practice quickly became a thing of the past.

Fast forward to three weeks ago.  At the personal trainers home and it is the same teacher that ignited my passion 10 years earlier.  We work out, she kicks our butts, “lift, push, slow down, hold!” And then she ends our session finally with shirvasana.  Well don’t ya know …. Total PTSD moment! All of those emotions I had felt that first day came rushing back. Her voice, my breathing, … the release.  Again, flood gates opened.  I shared my story with her.

I was there again last night – I was extremely silly.  I just was giggling about everything, especially my lack of coordination! But I tried to focus, I listened and even in my silliest moment I heard her words.  They resonated in a way she didn’t even intend.  They had become the lessons I have learned over the years – the lessons taught to me from our journey as a family.

“When you get to the top, pause”

Isn’t that powerful? Really we need to stop and pause and realize the beauty of our kids successes no matter how big or small. We need to bask in it, take it in because if we don’t we are onto the next struggle in a blink!

“Exhale, release

Enough said really!

Inhale and open up through your heart.”

Oh I just love that one.  It just makes me think of opening my heart to the wonderful people in my life and breathing in all the beauty of the blessings around me.

To this very special woman – thank you!

You give your heart and soul to us each week.  You make me laugh, cry, and heal. And, you speak powerful words without realizing!  I am blessed to know you again. Thank you for helping me reconnect with my yoga and with myself!

Overcoming!

August 3, 2015 § 2 Comments

Tonight was an amazing night for our family.  The theme I would say would be “overcoming”.

Tonight my daughter took the stage for her first real drumming performance of her life.  It was in no way a typical “first concert”.  Her drum teacher, who rocks, (pun intended) invited Ari to play with his band during an Italian feast in Boston’s North End. 

She practiced for months.  She was excited and nervous and so were we. This was a huge undertaking given Arianna’s, anxiety, sound sensitivities, distraction and having never met or heard the band play before.  Also just the thought that sixth short months ago she had undergone one of the largest surgeries a person can go through having her entire thoracic spine fused with rods and screws.

But she overcame it all!

I can’t say it was the best I have ever heard her play but that’s not what mattered it was everything else that mattered.

Having my parents with us celebrating their 49 wedding anniversary – that mattered!  A whole different form of “overcoming” in its own way!

My mom, who is living with further metastasis of kidney cancer and deals with so much spinal pain from it made the journey into the city to be part of all of it! Talk about “overcoming”!

But most of all seeing my little girl up on that stage, overcoming every single obstacle she had to deal with in that moment made me the happiest person on Earth! She put her anxiety aside, she didn’t let the noise get to her and even when the band members started doing a crazy dance right next to her she drummed right through it – not letting the distraction of them or the ever growing crowd get the best of her! 

Maybe people watched her, not seeing all these hidden obstacles or even the less hidden giant noise canceling headphone  or the top of her spinal scar showing and thought that she was not anything special. But, had they seen it from my eyes, dealt with the hours of therapies, naysayers, medications, and doctor appointments – then they would have seen just how amazing tonight truly was for our family and for my daughter.

I owe all of my love and gratitude to her drum teacher, who has never doubted her, not even for a second! He has challenged her while knowing her limits at the same time!  He is truly an angel on Earth for us! Thank you for loving our girl the way you do and giving her the opportunity you did tonight!  You have helped her overcome so much and believe in herself! We love you❤️
  
 

The music therapist

June 10, 2015 § 1 Comment

So this is quite a different post for me to write but as I watched her teach today I knew her sparkle needed to be shared with the world.

I did get her permission to write about her.   

Her name is Danielle Bayer.

She and I met several times over the years at fundraisers for the Williams Syndrome Association where she performed for children – using her special music therapy skills to bring complete joy to the children around her.

Over the years I have observed many music therapists.  I have come to form opinions about what makes a music therapist great and effective and I have found all of those qualities within Danielle’s abilities.

  She brings an air of magic into the classroom and she is without a doubt everyone’s favorite part of their week.

She works so hard through routine , bonding , understanding of complex disabilities and brings laughter to everyone’s day. 

  • The effects of her work are reflected both during class but also continue to effect us all even after and has left. 
  • I have witnessed non-verbal students , finding their voice.
  • I see increased speech production from all Students involved, neurotypical or not.
  • I see from these students increased ability to follow directions and most importantly the students see themselves as a group and they have bonded as such and now look after and respect one another.

I have never been moved to write about a specific person before but as she was leaving yesterday after our last session for the year I thought – I need to write about her, the world needs to know what a great music therapist can do.

Danielle also performs live singing in Plymouth, MA regularly.  


Thank you Danielle! 

 

It’s not regression – 

June 4, 2015 § Leave a comment

I DID NOT WRITE THIS BUT IT IS SOMETHNG THAT MUST BE SHARED THIS TIME OF THE YEAR!

This is such an important message.

It was shared with me about 3 years ago, maybe more.  

I apologize that I can not give due credit to the author but the original link is below ! 
http://www.spdbloggernetwork.com/2012/04/26/it-isnt-regression-2/It Isn’t Regression!


April 26, 2012 by Hartley Steiner in Advice, Behavior with 14 Comments

This is the time of year where parents all over the world are wondering, worrying and asking, “Why is my child regressing?” with a level of terror usually reserved for things like walking into your kitchen and finding your 4 year old has stuck the hose in the French doors and proceeded to turn it on, effectively flooding the kitchen with water – for the third time this week.
Oh, actually, that probably isn’t your life (the hose thing), just mine. . .
But the regression question is at the forefront of everyone’s minds these days. Isn’t it?
Teachers, parents, therapists, are all watching as our kids, who normally can perform a certain task, or have acceptable behavior in a given situation, are now magically unable to.
And it scares us. The idea that all of the therapy and consistency is somehow erased one spring day without so much as a warning – that it will all be for not, because our child has regressed.
I hate the word regression. It is so permanent. It is so damaging. It suggests that our kids have LOST skills that took them months, maybe years, to attain. But so you know, I don’t think what we parents see this time of year is true regression. Ah, then what is it?
Remember how we talked with Dr. Roya Ostovar about the analogy of sensory information coming into the body as stress – just more stress on an already overstressed body?
I am going to use that analogy – but I am going to take it one step further.
Think of your child as experiencing all disruptions – things that throw them off, that cause confusion or that upset the delicate balance in their lives – as stress.
Time Change

Season Change

Allergies

School Routine Changes

Home Routine Changes

OT/Therapy Routine Changes

Anticipation of Summer

Sleep changes

“Spring Fever” in the Air

Worry About Summer Scheduling

Worry About Next School Year

Worry About Not Seeing Their Friends

Worry About Leaving Their Teacher

and MORE.
Imagine if all of these things are coming into your child’s body as stress. Your child is probably too young to have any real skills in the area of self talk (where you tell yourself, “Don’t worry, it will be OK.”), so they are not truly processing any of these thoughts or phenomenon. Instead, it is all just a garbled stew of stress.
Now, enter his school teacher who normally just says, “You need to put that away, it is time for circle.” And your child screams. Then throws the toy.
“Little Tommy has regressed!” your child’s teacher says with pure exasperated annoyance. “He hasn’t done this since last fall!”
And you feel awful.
Or this example (stolen from SashaSays’s real life with her Wild Child).
You get a note home, “Your child was putting her knees on the table, and she refused to stop. So she was made to eat in the office.”
And you are at a loss for what to tell the teacher, because you don’t know why your child doing something that they haven’t done in ages.
Or this one, (stolen from Chynna’s blog).
Jaimie gets to school, just to realize her friend isn’t there. Big MELTDOWN.
And you think, “OMG she hasn’t done this since last September – I can’t handle her regressing!”
Do those sound familiar? They probably do. They are happening to everyone, everywhere, right now. Including our family.
But it is NOT REGRESSION.
Then, what is it?
It is your child’s way of handling stress.
This time of year (and usually the winter holiday season too) your child has so much stress coming into their body that they cannot access the skills necessary to react adaptively to situations that they normally don’t have a problem with.
Example reasoning from the above scenarios:
Little Tommy: He can’t transition because he is stressed – Maybe the time change has him not sleeping well, his allergies are flaring up and he really just wanted to play with the toy. Enter flip out.
Sasha’sGirl: She was obviously in need of some input in her legs (duh!) and was attempting to get it in a fairly adaptive fashion (knees on table at my house would not be a problem). Why couldn’t she follow the rules (the teacher thought she wouldn’t, but we have all read Dr. Greene’s work, and believe that this darling little one would do well if she could )? Because the need for sensory input was just one more stressor and it put her over the edge.
Chynna’s Jaimie: Why did Jaimie start to have the same behavior as she did at the beginning of the year? Because having her friend not there was just too much – as Chynna wrote, Jaimie was dealing with transition issue to 2nd grade, loss of her school routine with summer coming, and a myriad of other stressors. The absence of her friend was just too much.
Here is my point:
Our kids take two steps forward and one step back. Every year. Every month. Every week. Every day.
It is more important that we realize this, lower our demands of them during the rough times, and allow them to continue to feel successful, until we can ramp back up to where we were before – and move forward again. This isn’t a ‘loss of skills’, it is more of an ‘unable to access the skills’ issue.
So the next time someone says, “Your child has regressed” or “He hasn’t done that all year!”
Ask them if they would be able to function seamlessly after just after being fired from their job, finding out that their MIL is moving in with them for the summer, and having their husband call to say he’d wrecked the family’s car – without insurance.
How focused would they be then? Would they blow up? Be irritable? Easily frustrated? Not feeling flexible?
Of course they would be.
Imagine how your kid feels now — in their little lives, it really feels like that big of a deal.​

Prepping to play Chess

May 19, 2015 § Leave a comment

Next week we have our daughter’s annual IEP meeting.

This is our first meeting in a new building where they will be generating goals for my daughter.

Her current IEP is from her previous school.

I have such a process now of prepping. It’s mostly internal and I am guessing the night before I will get it all down on paper once it’s sorted in my head.

My process combines thoughts about what I thought was good about the year and what I thought was not.

It also becomes a “multi-player” game as I also try to anticipate exactly what the school team will say about the same issues and figure out how apart we are on each idea.   I have been in countless IEP meeting over the years.   I would say 10-20 on a typical year and situations that have occurred replay like movies in my head, perfectly stored for when they are needed. This entire process I often equate to “trying to play chess alone”.   You have to constantly figure out what you want to do but then switch sides and figure out what the response to your move will be.

Yes, It’s crazy making for sure.

Last year I spent countless hours prepping, worked with a professional who came to the meeting (not an advocate just a really educated person and expert in my daughters rare disability who was able to keep things positive).     Last year I paid this same person to meet with the teachers at my expense (without my presence) to know she was available to help my daughter and give them the freedom to address whatever they wanted without the pressure of me being in the room.  I also with the help of the Williams Syndrome Association  organized a professional conference for teachers/therapist in the district and surrounding towns.   Through all of this the team should have really gotten an understanding of my daughter’s learning profile and how to handle it.

But they didn’t – it was all for nothing.

One year later  and I am still begging for her work to be accommodated and modified.

So does prepping make a difference?  I am not sure.  I worked so hard last year to not be adversary.  I worked so hard so I didn’t have to “fight” later.

This year, I am prepping in a much different way.   I simply don’t have the money to spend that I did last year.  I am also entering which was once a hopeful situation as a disappointed parent.   and that changes everything.

It puts me in a crappy position.   I am walking though the door praying things will be great but knowing I am about to play chess for real.   It truly puts me in a reactive position.

Maybe they will read this?  Maybe they will act proactively and think about what should have been and what was.  Maybe they will do what’s right and admit they screwed up.   Maybe they will make things right moving forward.

A girl can hope can’t she?

In the mean time I prepare.  I visualize, I read and I anticipate.