Wednesday, October 31, 2012

Today's Top Ten

10.  The chill of October in Chicago!

9.  1st Quarter...coming to a close.

8.  Prepping for Parent-Teacher Conferences.

7.  Adding OT again?  Well, maybe...I think...I guess so.

6.  The amazing way my children handled a funeral.

5.  What are you going to be for Halloween?

4.  Yes, we are still happy with how things are going with gen ed/mainstreaming.  Just a little tweaking needs to be done.

3.  Making major family changes soon!

2.  I think I've been talked into writing a book with one of my buddies!  Yes we may do this!

1.  I LOVE my kids!

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Tuesday, October 30, 2012

He just LOVES Laurie Berkner!

My son is obsessed with Laurie Berkner.
Obsessed.
He wants all of her CDs on his little iPod Shuffle.
He sings like there is no tomorrow!
And we all know what a major role music plays in learning and development, too!
We use music and dancing as part of his speech therapy and it is really working for him.

Below is a link to one of his "solo" performances.
He didn't know that I was recording him....silly boy thought I was looking at photos on my camera.
My favorite part is around 0:41 seconds......I giggle everytime I hear that part!

And below is the real Laurie Berkner singing the "Bumble Bee Song (Buzz Buzz)":





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Monday, October 29, 2012

What Would YOUR "Billboard" Look Like?

In the short amount of time (years) that I have taken to this computer to share our journey with apraxia, special needs and special education, I have met a lot of people.
Most of them remind me of myself at various stages of the journey. 
Those in denial.
Those who are angry.
Those who have accepted and are working with what they have and making the best of it.
And then there's Jen.
An awesome Mom and even more awesome of a writer.
A gal after my own heart....whom I love with my whole heart.
And after you read what she wrote....what she experienced...what she dreams for her child, you will love her, too!
Thank you, Jen Jen, for speaking from your heart.
 
 
A Billboard
Successful. Accepted. Loved. Those are three terms I often use when people ask what I want for my son, Wil, in his lifetime. As parents, we all long for our children to be a part of something bigger in this life. To find a niche; a place in this world that they can call their own and be accepted. Wil has had to fight tooth and nail in his short sixteen years on the planet for things that can come easily for others, including his siblings. Speaking. Writing. Blowing his nose. Remembering names. Lifting a spoon full of apple sauce to his mouth without making contact with his cheek instead. Those are little things for some. Large hurdles crossed for others.
We labored for four years to find a diagnosis for our son. As a graduate with a degree in early childhood education, I knew what was going on with him developmentally at the age of two was off in many ways. It wasn’t until Wil was in first grade, that we took him to a doctor and a physical therapist, both possessing extensive clinical knowledge in Apraxia, that we had even heard of the word. The physical therapist asked Wil to write his name on a piece of paper. He grabbed the pencil with his right hand, yet used the pointer finger of his left to guide the pencil across the page. I will never forget Dale Turner, the best PT provider on the planet, turning to me and saying, “This poor little boy has Apraxia! Why didn’t any professionals see signs before?”
I had no answer for her.
Mostly because professionals in the school settings were quick to label him autistic, whereas those in private practice (doctors, therapists and clinicians) knew it wasn’t a matter of being on the Autism Spectrum Disorder Scale, but they just couldn’t put their finger on what it was with Wil. He was quirky. Quiet. Ran on the playground like Napoleon Dynamite. He was also the first one to comfort a sad classmate, hug his baby brother, and want to be a part of the activities of others. Mike, my husband, and I always felt like he was a little onion. So many layers to peel to get to the core of what was going on. And so now with that brief history of our personal journey behind us, I want to get to the heart of the matter of my blog post today. Thanks for sticking with me.
Apraxia is still misunderstood. After a recent conversation with a teacher in Wil’s building where she told me he is, “The face of autism,” and meant it with nothing but the best of intentions and love in her heart, I was caught off-guard. At first my voice dropped a few octaves as I corrected her, yet the spirit of the conversation embodied love and acceptance of all students with disabilities and this teacher meant no ill will in any way, shape or form. I realized then and there we as parents of apraxic children still have a lot of work to do.
Yes, I wish that I could walk into a case conference and not be the one to educate the staff every year on what Apraxia is. Yet, I am glad that I can and will always do it in the spirit of helping them, help my son. Yes, I wish that educators had more in-services provided to them to understand not only more about this diagnosis and its effects, but also for other diagnoses such as Hyperlexia, Auditory Processing Disorder, Ataxia and so, so many others. Yet, I realize that is not happening and I will gladly continue to be the one who passes on information to them as best I can in each building Wil passes through on the road to graduation.
What people do not know about my first born is vast. They have no idea how many tears he sheds a week knowing he’s different. He asks me for “smart pills” to fix what’s broken inside. He struggles with not being as book smart, popular or as athletic as his younger brother. He understands his repertoire of friends is slim; none that he spends time with outside of the school building. Wil’s confusion in life is sometimes misinterpreted is disrespect, or an unwillingness to pay attention. Those moments his tears fall lead to gushes sorrow from my soul.
There are many other things I’d like people to know about Wil too. He has gone from the preschooler who hid under tables in class, to delivering Sunday morning announcements before our church congregation, complete with a few jokes. He can cook a mean pot of mac & cheese better than his mom can. He is tender and loving towards his sister, and fights like crazy with his brother. He wakes himself up and gets going in the morning with a bigger smile than I can ever muster at 6:00AM. I never think twice about leaving him to babysit his little sister, Gracie. Wil plays piggyback, builds block towers, and reads bedtime stories to her in a superb fashion. Wil made the high school bowling team this year. He’s proud to be the owner of a bowling ball and old-man looking white shoes to wear on the lanes. Whether he hits the gutter or scores a strike, his smile spreads like wildfire and infects his teammates positively.

       If my son is going to be the face of something, anything, I want it to be that of a human being. If he is to be a billboard for others to see, let it be one that says we are all different on the outside, yet have feelings and souls that can bleed on the inside. If he is to be an example to other students, let it be that he is accepting of others and slow to judge his peers. And in his years on God’s earth, if Wil can be a representative of the population with special needs that teaches others to look beyond the disability and directly at ability, then I am one proud mother who knows she did one thing right.
Bless and be blessed,
Jen

 
Jen Tucker has never met a gluten free cupcake that she didn’t like. A former teacher and educator, she has worked with children in school, hospital, and enrichment settings. In her years at The Children’s Museum of Indianapolis, it was Jen’s job to bring the “hands on fun” into the visiting exhibitions in the galleries. Jen broke away from writing children’s books and thematic units in 2011 with her memoir, The Day I Wore my Panties Inside Out which was a semifinalist in the humor category in the 2011 Goodreads Book Awards. She is a monthly guest blogger at the website, Survival for Blondes where she marries humor with preparedness. Jen lives in West Lafayette, Indiana with her husband, Mike, and their three children.
You can purchase Jen’s latest book, The Day I Lost My Shaker of Salt, here. You can also find her on Twitter, Facebook, her blog or on her website at Princess with a Pen.
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Thursday, October 25, 2012

How We Handled the "Death and Dying Talk"


Death and dying.
Not a typical dinner topic.
Fortunately, we have a relatively healthy family.
But recently, a family member got very ill, very quickly and out of the blue.
And not just any family member:  a Grandmother.
For 21 days, we didn't say anything to the kids about it.
 
But they knew something was amiss.
 
They picked up on the tears.
The frustrations.
The arguments.
The frequent "meetings" that Mom and Dad had to go to.
 
And while many of you may not agree with how we (as parents) handled the situation, we chose to handle it the way we knew would work best for our kids.
The last thing we wanted was to put them in a tailspin.
Death is not something that is easily understood.
Not by adults.
Not by "typical" children.
So how in the world would a child with special needs get it?
 
We chose to have our conversations out of the range of little ears.
Our "cry sessions" had to become private or when the kids were in school or in bed for the night.
We chose to tells them that "Mom had a meeting" or "Dad was still at work" when one of us went to the hospital to visit.
And it worked....kinda.
For 21 days.
And we found out that there were some behavior issues in school as well.
I am sure we caused it...seeing that we were choosing to withhold information from them.
Because I am sure they knew something was very wrong.
We informed the school of the death of their Grandmother and the schools were very supportive.
So supportive that one of the schools sent this home to help us:

 
 
Where Are You? A Child’s Book About Loss, by Laura Olivieri, illustrated by Kristin Elder. For younger children, this book describes the feelings a boy has after a death, in simple sentences that comfort without sugarcoating raw emotion. “I look at your picture and your blue shirt in the closet. But you are not here. I miss you.” The explorations of an afterlife don’t come to a pat conclusion or deny the sense of loss – “Maybe you are a raindrop that fell into a cool blue ocean. But I can’t touch you.” But the book ends with the child drawing pictures and remembering happy times: “I remember you. So you are right here.”

 
 
And it helped tremendously.
A simple book.
Simple photos.
Simple language.
We didn't read it to them page by page.
We let them read it and look at the pictures.
But it wasn't going to take the place of "the talk" that needed to happen.
 
We chose not to say anything the night before the funeral.
We know from past experiences that bad news or bad days lead to bad nights and no sleep with these two kids.
So on the morning of the funeral, we had the talk.
It was 6:30am and the little girl was up early sitting in the living room.
She randomly said "Nana is sick."
 
That stopped my husband and I in our tracks.
And now we had to tell her the truth.
The conversation lasted for less than one minute.
Less than a mere 60 seconds.
We planned on telling her the concrete truth in the simplest forms we knew.
We would only answer her "WH-" questions and would not elaborate unless she wanted to know more.
We weren't going to tell her that she passed away three days prior on my sweet little girl's birthday either.
That will be for a later date...years down the road.
 
We told her Nana wasn't sick anymore.
She looked at us blankly.
She asked if Nana was in the hospital.
We told her that Nana was with Jesus.
She looked at us blankly.
She asked if Nana was OK.
We told her that she was happy with Jesus.
 
And at that moment, she stopped, looked down at her little hands and then looked at us and said "OK."
 
OK.
OK?
That's all you have to say?
No questions?
No comments?
Where was the "Why?" "When?" and "Where?" questions?
Just OK.
 
At the Church, we gathered in the back, talking and hugging family and friends.
Kate stood next to me, and I was on guard to shelter her from any additional information that she didn't ask herself.
As I talked with one family member, she turned and looked at a marble etching of angels.
Then she turned to me, tugged on my shirt-sleeve and said "Nana is with those angels."
The adults stopped and looked at her, looked at each other, and smiled at the innocence of a child.
 
WOW.
OK.
She gets it, and she gets it in her own little way.
 
Rest in peace, Nana.


 

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Friday, October 12, 2012

Parents: Read Your IEP Fine Print

This doesn't happen all the time, but when it does you really want to rejoice!

We had our annual IEP for the little guy this morning.
Either I am becoming a pro at these and they are rattling me less and less or I am on autopilot here because it was more of a casual, social event rather than a Tums-chewing event.

Granted, it is much different than his sister's meetings.
Less issues.
Less minutes.
Less fighting for stuff and support.
Less of everything.

But nonetheless, it was a meeting and it went well.
Two experienced parents.
Two experienced school professionals.
Two nervous novice school professionals (with shaking hands, too!).
Minutes are not changing (as if I would let them?).
Services are staying the same (of course they are!).

However, there have been some State changes to the template IEP that I think you all need to be aware of.
In the State of Illinois, they now require the schools to identify what deficits "adversely effect" the child in the classroom.

Adversely.
Don't like that word.
And the statement that was on the bottom of page three of his IEP read as follows:


"his developmental delay and speech and language delay adversely impacts his level of engagement and rate of progress in the general education curriculum.  This results in delays in his development of positive social relationships, acquisition of new knowledge and skills, and his ability to take appropriate actions to meet his own needs."


HUH?

"Adversely impacts his level of engagement and rate of progress in gen ed?"
So wrong!
While  his social relationships are emerging and he is becoming comfortable with his peers, I would (and did!) argue that this was an inaccurate statement.

"This results in delays of positive social relationships, acquisition of new knowledge and skills and inability to meet his own needs?"
I was told over and over how many friends he has in school, who he gravitates to and who gravitates to him!
The graphs that were shown to me do not reflect this.
And while he does require cues and assistance in completing skills and tasks, he is a very functional, self-sufficient little boy
Wrong again.

This is not my son.
This is the State giving the schools a black vs white choice for assessments.
This is the State not allowing a subjective statement to be written.

So of course,  I got feisty about it.
And I asked for it to be removed from the IEP paperwork.
It is a legal document and I do not want an inaccurate statement following him like this in school.

So, it was rewritten and revised to look like this:

"his developmental delay and speech and language delay impact his communication, attention, social interaction and fine motor activities."
 
Much better!

My advice to you all:  read your paperwork line by line.
Note any discrepancy.
Your State may be assessing your child without knowing one thing about them.

And most of all.....I have NO REGRETS in terms of not sending him to Kindergarten this year!
Progress is proof!


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Tuesday, October 2, 2012

Tuesday Top Ten

10.  A new swim coach!  The kids love her....although they still miss their other coach.

9.  Fall colors!

8.  Prepping for Halloween and a little lady's birthday coming up!

7.  Continued speech therapy progress!

6.  Consequences for bad behavior.

5.  Rocking her first-ever spelling test!

4.  Walking to school on cool, crisp fall mornings.

3.  Progress reports that make you smile!

2.  School pictures!

1.  I LOVE my kids!

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