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Tuesday, December 22, 2009
Tuesday, December 15, 2009
So I ordered some items for Megan to use at home to help her with her homework.
Megan's biggest issue is with strength and grasp (Fine Motor Skills).
She tires quickly and wants to give up after just writing her first name.
We found that if her feet are on the ground and her work is raised off of the flat desk then she can work for longer periods of time.
So now we have a slanted work board.

It is clear so that you can put papers underneath so she can work on tracing.

Here is head phones so she can hear back everything she speaks. This helps with her speech issues....She said "Pennsylvania" yesterday very clearly just by hearing herself in these headphones/microphones.

The last items are: 1. wrist band to help her hold her pencil in place 2. 3 tiny u shaped pencils to help strengthen her grasp 3. Blacked strips with blocks to help her focus on reading words in her books. So far all of these products have been useful. We are hoping with reinforcing at home that she will become more confident in her work at school.

p.s. If you are wondering, we purchased these items on Therapy Shoppe.
Saturday, December 12, 2009
On Shutterfly are buy 1 get 1 50% off right now. They make GREAT gifts and they are fun to make. I just finished one myself. It is really cool and I cannot wait to get it.

Also use the code SHIP50 and get FREE Shipping on orders over $50.

Here is 2 pages out of my book.
Thursday, December 10, 2009
Dr. Randal Betz.

He is an exceptional doctor but a more extraordinary person.

I know Dr. Betz personally because he and my father are best friends. He takes really good care of my dad and makes him feel like a part of his family. They are very close. My dad has his own room at his home which he uses often.

When my daughter Megan was born 6 years ago with Down Syndrome I would never have thought that Dr. Betz would provide so much in way of exceptional care for myself and my friends. After Megan was born I joined the online community, Downsyn.com, where I also became a moderator.
I spent the first few years of Megan's life connecting with these other families on the site and becoming close with them, talked on the phone everyday and met them at the annual NDSC Conferences. We are now connected forever even if we have moved on and do not talk as regularly we would do anything for each other.

My friend Renee, she has a 5 year old daughter Kennedy and when she got neck x-rays (which is a routine check-up for our kids because they have a higher chance of having AAI) the first person I thought of was my father's best friend, Uncle Randy.
So without thought I had my dad give him a ring and he and I continued to swap emails until eventually he took over Kennedy's care. Kennedy went on to have spinal fusion surgery at Shriners in Philadelphia and today is doing amazingly well.

With Renee and Kennedy's success I have had so many people contact me to get in touch with Dr. Betz. And every time, I send on the email, and every time he reviews the case and helps in any way he can. He is my hero because he isn't looking to get anything out of it, he just wants to help. He again is an exceptional doctor but more importantly he is an extraordinary human being and I wish more doctor's were just like him. So thank you so much Dr. Betz for never saying I can't! I am sure you are a hero to more than just me!
Wednesday, December 9, 2009
Mom: "Hey Joey I want you to read my blog"

Mom: read my blog out loud to Joey.

Mom: "Joey do you know what segregation is?"

Joey: "Ummm, not sure."

Mom: "Did you know when Nana was little that blacks and whites couldn't go to school together?"

Joey: "seriously"..."that wasn't that long ago"..."Man I can't imagine that, Nigel is like my best friend, I can't imagine not being able to go to school together"

Mom: "So maybe when you are talking to your son 20 years from now, he will answer the same way about his friend with a disability....now wouldn't that be cool?"

Joey: "Now that would be awesome"
LDA? Anyone know what this stands for?

LDA= Least Dangerous Assumption
Anyone know what that means and how it is connected to inclusion?

In 1984, Anne Donnellan, a respected researcher in special education, wrote that “the criterion of least dangerous assumption holds that in the absence of conclusive data, educational decisions ought to be based on assumptions which, if incorrect, will have the least dangerous effect on the likelihood that students will be able to function independently as adults.” From Disability Solutions Volume 6 Issue 3 Fall 2005

Case in point. I watched a film during our conference where a mother fought to get her disabled daughter included. Her daughter grew up in the 70's when it was much harder to get a child mainstreamed. The mother fought an up hill battle. She had a daughter who had limited use of her hands and was non verbal with violent behaviors. All the doctor's said she was mentally retarded and not to waste anytime trying to teach her, it would be lost. So this child went through life not being taught any general education curriculum. When this child grew into an adult she was completely dependent on her mother but with strides in Assitive Technology they were able to introduce a computer system that she could type through. What they found out through this new technology was that this child now an adult was trying to scream out to everybody without her voice that she was capable. She understood EVERYTHING everybody was saying but was incapable of speaking or writing the words. All her violent behaviors were her trying to get people's attention. Can you imagine how you would feel if this were you or your child? So now as an adult she still requires the use of a nurse and cannot care for herself. This story is a DANGEROUS ASSUMPTION....So now go re-read the definition of LDA. Make sense now?
What do we lose if we assume that EVERY CHILD is competent? Say we send a child who has the label of MR through the general education classroom and she grows up and she still cannot understand, what have we truly lost? The alternative is the case in point above. Do you want that to be your child?
"I see inclusion as the last frontier of desegregation....if you read the brief from Brown v. The Board of Education...the board of Education argued that if we let blacks be integrated that the next thing you know is that we will be letting people with disabilities be integrated"
From the Documentary Including Samuel
Joe Petner
Principal, Haggerty School

All children no matter their gender, race, nationality, religion or disability should all be afforded the same educational opportunities surrounded by their peers.

Some people fear that their child's behavioral problems are to extreme to include them in general education. Some people fear their child's medical needs are too great to have them in the general education classroom. Some people feel that since there child can't write or speak or are mentally retarded that they somehow should not be included in a regular education classroom. As a parent to 1 child with special needs whom is mentally retarded and 2 typical children I say please include your children. Challenge your system to make it work. It can be done appropriately. Not only will your kids with special needs benefit but my typical children will too.
I imagine a world where your child in a wheelchair who cannot speak is the best man at my son's wedding.
I imagine a world where your child who requires deep pressure to get his behaviors under control is settled by the touch of my daughter.
I imagine a world where all our children no matter their gender, race, nationality, religion or disability walk side by side in a world that doesn't see labels.
Am I delusional to think this is possible?
I FEARED the disabled growing up, I do not anymore.
I do not want that for my children.

Can you imagine being that parent who just wants there child included and to get it the mother must say "Just let her burn"....well then, as a mother....I will join this other mother and say it too...."Just let her burn" because all our children deserve a chance at a more accepting life and it starts with a sense of belonging.
I wanted to talk about a conference I went to back in October.
The guest speakers were husband and wife (The Theoharis's) and also professors at Syracuse University. Here is Julie's website for those interested in learning more.

When I first decided I wanted Megan included my husband and I talked about where we thought Megan needed to "be" to do it. We set 1 goal...that she needed to be fully potty trained or otherwise she would stand out in the classroom as different.
What I didn't realize was that it was ok that she was different. Her speech and her physical ability would make her stand out and that was ok. That was why we wanted her included, to make her "difference" one's others could accept.

Julie Causton-Theoharis started the conference by talking about a mom and her disabled daughter. Julie was assigned to this family as a 1 on 1 and was told she would be doomed as a para-professional because this mother was CRAZY (or so that is what the other teachers and school administration had said). Her daughter could not walk and barely spoke, she was in a wheelchair and she wanted her daughter to go to her home school. NOW THAT IS CRAZY ISN'T IT???? Julie spent a lot of time with this family. The mother started out by telling her their story. They moved into town and her daughter was assigned to go to a special school where they were prepared to deal with her extensive needs. Her mother would have to wake up extra early and put her daughter on a bus that goes 1 hour away. But her mother didn't want that. She wanted her daughter to go to the same school as the kids next door. The school was not even a mile from her home. Shouldn't her daughter get to go to that school? It saves her daughter 2 hours of riding on a bus a day...10 hours a week. So the mother wheeled her daughter right into the home school and signed her up. The school looked at her and her daughter and nicely said, "oh, your daughter needs to go to the wheel chair school, not here, we are not equipped to help her here."
So the mother was shooed away and told to send her to the other school.
The mom still did not want to go to that other school so she marched right into the school the next day and wheeled her daughter into the 1st grade classroom where she belonged. She walked out and went home. She received a phone call right away telling her to come pick up her daughter that the teacher was not equipped to handle her and didn't know what to do with her. The mother responded,"just teach her like you would teach the other kids" and hung up the phone. The phone rang again and it was the school administration telling the mother to come pick up the child. That the building had fire safety rules and that they would not be able to get her daughter out of the school in time and she would most likely die in a fire.
The mother instead researched and found that not only were there no fires ever in that school, but there were no real fires in any of the schools in that state in the past 50 years. So the mother went right into that school and said, "I give you my permission that if there is a fire in the school then you can let my daughter burn."

Tuesday, December 8, 2009
So many people ask me, why inclusion? Why send Megan into an environment that is set up for her to fail? So many teachers have gotten used to finding the kids with the "disability" and sending them to the appropriate classroom for the right support....you sent Megan into a place that has no idea how to handle her....Well, I say....

I do it because I want what is best for MEGAN. Community and socialism is more important to me than academics. I can help and supplement at home....I cannot supplement the socialism and community she needs to build for herself.

I am going to be brutally honest here. Growing up I was SCARED of the people with special needs, they did not go to school with me and when I saw them out in the neighborhood I STAYED AWAY from them. All the kids in the neighborhood were mean to them. I remember this boy with Down Syndrome vividly, his name was Chris and people nicknamed him Purple Duck (not sure why). Chris liked one of the girls in the neighborhood and wanted to kiss her (I was in 5th or 6th grade and had no idea how old Chris was). Behind his back, this "girl" made fun of him. She told him to eat dog #$%^ and she would kiss him. It was so sad and gross and I just was not a strong enough person to get involved and I am ashamed of who I was, even being present for something like that.

My fear surfaced again when Megan was born. I was scared of her and scared I couldn't love her. Boy was I wrong. I did a lot of soul-searching and recounted my old memories the first couple of weeks after her birth. I realized people were mean to Chris because they did not know him, he was sent to a "special" school and so nobody was used to his speech and behaviors. He was not the norm. It was now my job as a parent to make it the norm. To expose Megan to all the kids who she would grow up around and be expected to work with in the future. So inclusion works for us. Megan is known in the community and treated with respect, she is not feared and she is part of the norm. So when we went to the mall on Friday and we ran in to kids from her school they did not stare and point, they did not gossip about her or make fun of her...they all walked right up to her and gave her a hug and asked her how she was doing....and so, this is why inclusion is important to me. I don't want anyone to fear Megan.
I would say...

Megan will most likely grow up...

And be on stage.

It is where she shines!
Thursday, December 3, 2009
Yesterday I went in to Megan's school to help her "shop" for presents for her brother, sister and dad. She did all the picking out herself. It was so cute to see her like something and pop it into her bag. I was very proud of her. Once we were done shopping she sat with her friends going over their purchases while I helped some other kids in her class.
She bought her sister an Angel Necklace in this cute velvet pink heart box, she picked out basketball book marks for Joey's books he is reading and she bought her daddy a ______ (sorry, daddy always reads the blog).
We had such a nice time and she gave me my hug and went back to class. She is finally getting used to seeing me at school and then going back to class w/o getting upset.

Had to share. Before the Thanksgiving holiday there were presents coming home in Megan's bookbag for her birthday. There were stuffed animals, necklace, movies and a cute note which reads like this:
Megan, Happy Birthday! You are so cool. I hope you like the stuffed animal dog. Love, Kara

OK, I had tears in my eyes reading that. How sweet! Looks like Megan is doing very well in the social department. When I spoke to one of the teachers at her school she told me Megan's new nickname was Megan the Movie Star since everyone knows her and says hello to her. I don't think I could ask for anything more!