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A Time To Dance...

6/17/2014

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Disney Countdown: 90 Days

Before Hope could walk, I bought her a pair of tap shoes.  Like so many other moms with beautiful little girls, I imagined her in a fluffy pink tutu gliding magically across a stage and preforming to the roar of the audience. 

However, after she was diagnosed with Autism - I hid the tap shoes away.  They were too painful to look at.  All the doctors and professionals gave me a very grim outlook for  her future.  I would not allow myself to even consider the possibility of her being able to have the dream of dancing.  My little girl couldn't speak or look at me or tell me if she had a  belly ache...  In my mind, dancing became "labeled" impossible - just like so many other things in her life.

When her therapist suggested this past winter that Hope maybe try a ballet class, I was skeptical - but I trusted her judgment and knew I had to give Hope a chance.  (I am slowly learning that I should never underestimate my children - Autistic or not.) So in January of this year Hope attended her first dance class which was a combination of ballet and tap. 

From the moment the music started, I witnessed her change - it was as though she was awakened to another world - one outside her world of Autism.  The teachers all were amazed at how well she did.  She listened, followed directions and she not only realized that they were other children in class with her - but she watched them!!  These were all things she had never done before.  They all encouraged me to continue, which we have.  The dance school she attends is absolutely amazing and allowed her therapist to attend every class with her.

Now, every Saturday she wears those same tap shoes to dance class. And what once was a painful reminder of everything that she would never be able to do - have now become the symbol of all that she is capable of - there is no stopping her.   

This past weekend, Hope preformed in her first recital.  Something only a year ago I didn't think would ever be  possible.  We all held our breath to see if she would be able to withstand all the sensory elements of the theatre and actually do her little dance on stage with her friends.  When she did, there was not a dry eye among family, friends and dance teachers. 

A door to the world outside of Autism has opened.  And thanks to a superb dance studio - who are so accommodating to us, amazing teachers & therapists, and the Grace of God, she danced through it.  

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We were not allow to film at the theater, but the following is a dress rehearsal at the studio. Hope is the third poodle from the left with the long thin braid.  And yes - she is the one who is leading the others during the middle part.   She repeated the directions that the teacher would say, so the others followed her lead.
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Happy Halloween!

10/31/2013

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WOW - it's been a while!  Our crazy schedules and homeschool drama has made our lives so hectic lately - but I have promised myself that I will update this blog in the next couple of days!  lol 
  
I have to share...  The week before we left for our Disney trip, I entered the Disney Parks Moms Panel search and found out last week that I advanced to round 2. 

Don't know if I will make it any further, but I have to say, it was so exciting to have made it that far!  I actually cried
when I read the e-mail.  (Now you guys know I'm a crazy person!)  

Keeping my fingers crossed for round 3!
  

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Returning to Reality

10/2/2013

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Sadly we have returned from Disney and we are slowly getting back to reality and our daily routines.  

Our trip was incredible and so many amazing things happened.

I promise I will be updating this site over the next week, right now  I am in the process of writing a trip report.  You can read it here:

http://forums.wdwmagic.com/threads/this-is-autism-when-you-add-a-little-pixie-dust.873100/

My name on the site is FigmentForever

The thread is titled:  This is Autism... When you add a little Pixie Dust!

I hope you enjoy it!






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HUGE Milestone Of The Day!

9/9/2013

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If you asked me a year and a half ago if I thought Hope would potty train - I would have probably teared up and said - "I don't know."  Not even the neurologist could say for sure.    This year, she has done so well in most areas  - but it seemed that the "switch" that made her realize "I have to go." wasn't working.  If I didn't bring her to the bathroom, she would just have an accident.  And she didn't care. 

A week or so ago - she amazed me when she actually walked into the bathroom, got herself on the potty seat and went.  Unfortunately , she forgot to pull her pants down.   But that did not stop me from doing a huge HAPPY DANCE!

Well, today you can only imagine my joy when I heard her go into the bathroom all by herself and she remembered everything!  I cried - I think you really have to be a mom of a special needs kid to understand what kind of accomplishment it is. 

It was one of those "WOW - all that hard work paid off!"  kind of moments.  It makes me want to scream out - There's no stopping her!

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Business As Usual

9/9/2013

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Disney Countdown:  9 Days

Disney may be 9 days away, but this week is a full school week.  I will admit that the everyone's focus level is not the best, but work needs to get done.  Overall, it was a pretty good day. 
While the girls were working on independent stuff, I was able to sneak upstairs and get some packing done.  We are flying Jet Blue which allows each one of us to have one checked item fly free.  So we will have 4 suitcases total.
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Suitcase number one holds all of out toiletries.  I put all the items in Ziplock bags just in case anything leaks. 

At the top are my Purex laundry sheets.  They are great to do laundry with.  

Suitcase number 2 holds all of our swim gear and bedding items.  Hope will not sleep in hotel beds - she hates them.  So we have to set her up on the floor.  She prefers the floor even at home sometimes.  So I have her pillows, blanket and comforter. 
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Suitcase number 3 has our snacks, diapers & wipes and also Julia's and Hope's clothes.  Yes - this one is massive! 
When my husband weighed it, it registered 49 pounds.  Since you are only allowed up to 50 pounds before being charged, I needed to move a couple things around.  Just to be
on the safe side!

Finally, the last suitcase will hold my husband's and my clothes and any last minute "I forgot...". 
Carry-on's and outfits for travel day are the only packing I have left! 
Cinderella was the movie of the day - it played on the Disney Channel.
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Measuring Up

9/8/2013

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Countdown To Disney:  10 Days

Well, with 10 days to go, I've been checking the height requirements for Splash Mountain and Soarin.  Both have a height requirement of 40 inches.  I have been trying to measure Hope to see if she will make it.  It is so close, I can't tell!  I think Disney will have to make the call.   
I pre-ordered Photopass+ for our trip.  Last year was the first time I splurged and bought it.  I was really happy I did.  The pre-purchase price is $149.00.  They send you a certificate to redeem at WDW for the Photopass+ card and also a code to order the photo CD when you return home.  In addition to having all the photos taken in the parks by Disney Photographers, you can also have all your ride photos added (where applicable).  Plus if you are eating at any meal that offers a photo package - like Chef Mickey's, those are included too - as well as the photos added to the card.!   
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Since I am the family photographer, I also enjoy being able to "be" in the pictures.
We have also begun our family Disney Movie Marathon.  I have read on other people's blogs how they watch their favorite Disney Movies before leaving for their trip.  I have never done it before but it seems like fun so I thought I would give it a try. 

One of our family's top favorite ride experience is Splash Mountain. 

Julia always asks about the characters - Brer Fox & Brer Rabbit.  I told her about the movie "Song of The South" and Uncle Remus.  I remember watching the movie as a child in theaters.   But since the movie is not available in the U.S., she has never seen it.  Well,  I managed to find a copy!  We watched it today.  She recognized not only the songs, but the characters and  scenes from Splash Mountain.   

As we spoke about the controversy of the movie it also brought up the topic of the Civil War.  So I know what our next history unit will be on. 
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Packing and Organizing

9/7/2013

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Countdown to Disney: 11 Days

Waking up this morning was a subtle reminder that the end of summer is upon us in the Northeast.  It was a brisk 44 degrees outside and the house was a bit chilly. 

Now that State Fair and Rosh Hashanah  are behind me, my focus can now be on Disney!  Yeah!

My morning was spent near the washing machine.  I took down the girls fall clothes and began our "packing piles".  Since the weather changed so fast, I can gather together most of our summer clothes to pack while keeping just a couple of short outfits out for the next 11 days.  Julia graciously donated her bookshelves in her room for the designated "Disney Packing Station" 
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Our luggage tags are ready to go along with our resort ID tags.  I have to say Disney makes traveling super easy with their Magical Express Service. 
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Next - time to get the suitcases ready.
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A Sweet New Year

9/6/2013

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Disney Countdown: 12 Days

Well, I survived 16 in-laws and my very first Rosh Hashanah that I hosted.  I think it went pretty well.  No complaints on the food - which is good because when my brother-in laws do not like your cooking, you know about it!    However, I will admit my matzos balls were a matzos mess.  I didn't realize that they expand so much well you put them in the pot of water!  So a bunch of them just disintegrated.  But all in all, not a bad job for a Catholic, Italian girl!  Special thanks to The Food Yenta - a fantastic website that provided me with most of my recipes.   http://thefoodyenta.com/wp/

The weather held out and we were able to eat outside on the patio.  No pictures though - I was too busy to even snap one. 

I was thrilled that my sister in-law, Jen,  almost broke out in tears when she saw Hope.  She hasn't seen her since April and she commented that she was like a different child.  That is HUGE to me.  I know this past year has been so successful for Hope, but I am with her everyday so I don't see changes the way others can who do not see her for a long time.  I know when I am having a bad day - you know, those kind of days when you, as a homeschooler and mom doubt yourself or wonder are you doing the right thing?  I can think back to her face and know that I am on the right path.

My niece and nephew are both starting Kindergarten on Monday.  My nephew is 4 turning 5 in November - one month older than Hope.  While my niece is 5 turning 6 in January.  He will be the youngest in his class while she will be the oldest.   I am curious to follow their "building" school journey alongside of Hope's homeschooling journey. 
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New York State Fair

8/26/2013

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Disney Countdown: 

Julia and I headed to Syracuse Wednesday morning for our 4th trip to the Great New York State Fair.  I cherish the time I get to spend alone with Julia.  She makes a lot of sacrifices for her sister, so she definitely deserves some mom and daughter time.  And I have to admit, I love the fair!
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Our club had an Action Booth where kids could make their own Geocache box.  We ended up making just over 200 boxes in 4 hours!
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The Orange County Booth looked great!
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Julia did her Produced In New York presentation and received the purple rosette for Judges Choice! 
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Of course, there are so many things you can only see at the fair:
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"This is autism" - not quite

6/27/2013

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"This Is Autism" - not quite
days to disney

As a rule, I do not watch very much T.V.  - OK it's true, you will catch me watching Dance Moms now and then.  However I did hear about a documentary called, This Is Autism, that was going to air on Discovery Fit & Health Channel and obviously it caught my interest.  So I sat down and watched. 

Please note - the following is my opinion only.

It was the most depressing view on Autism that I have seen.
  Had I had viewed this in the days or weeks after Hope was diagnosed, I think I might still be in bed crying.
The documentary by Louis Theroux followed the lives of three families with Autistic children.  It showed what I believe to be very severe cases of Autism.  Yet, it gave the impression that this is Autism in general.  That is what bothered me the most. 

It never discussed at what age each of the children were diagnosed, what kind of early intervention they received early in life and the extent of their therapy now in relation to their home life.  . 

One boy, who was older was prone to violent outbursts.  When they occurred, he had to be physically restrained by mom or dad, or the school staff.  It showed mom actually lying on top of him until he settled down. She wanted it to be filmed so "the world" could see what the moms of Autistic children go through - again very generalized. 

My heart went out to her.  But at the same time, I wondered, what self regulation strategies  were implemented when this boy was 2 or 3?  In other words, did his early therapists work with him and his family to teach him how to calm down by himself and re-group?  This is something we are focused on with Hope right now.   

I think most of the children in the film attended a
private school for Autism in the state of New Jersey.  They seemed to all be making progress at school, but at home, they seemed not connected with anything.  The parents didn't seem to know how they should fit in. 

Yet again, I see the beauty of homeschooling. I can't imagine putting Hope on a bus in the morning, her spending all day in an artificial atmosphere and then getting off the bus and me expecting her to function in her life at home. How is that possible?  

Most of the parents who were interviewed sounded and appeared "beaten" down.  In one instance, Theroux asked one mother, "Does Autism define you and your family"?  Without hesitation, her answer was emphatically "Yes".     I thought that was really sad.
    
Towards the end of the show, one of the mom's admitted her fear that her son would end up in a residential home.  She said that inevitably, this was to be the outcome for all of "these" children.   
When Hope was diagnosed, I too heard those words from the doctors - "severe" & "profound".  But the fact that all of her therapies - all of the hard work we do, takes place where it matters most, in the environment in which she needs to function everyday, I believe, makes all the difference.

Perhaps Mr. Theroux will do another documentary on Autistic children who are homeschooled.  How curious would that be?  I would have to find some time to sit down and watch that too.
I appreciate the families who made this documentary possible.  I feel their pain because I walk the same journey.  However, I hope that other parents who view this film do not think that this is nessesarily the outcome for their children.  It does not have to be.   I would tell them to read the works of Temple Granden.

For the record, I do not feel that Autism defines me or my husband, or my daughter Julia or even Hope for that matter.  Rather, I believe that it is our family and how we function with the challenges of Autism in our lives that enables us to define a single snapshot of Autism.
 
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    About me

    I am a homeschooling mom who lives in New York State and homeschools my 2 daughters.  My oldest is 19 and Dyslexic and my youngest, who is 12,  was diagnosed with profound Autism. 

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