So one of my son's friends posts on Facebook, "in my opinion Autism is worse than cancer." His friend has PDD-NOS. This friend never had to deal with being non-verbal for his young life like my so did. As a teen, I am guessing this friend also has not watched their grandmother battling breast cancer as we have either.
I told my son, feel free to reply that that you strongly disagree if that is how you feel.
It is how I feel, my so stated in his pragmatic tone of voice.
Furiously he types on his iPhone into Facebook.
Why do you disagree, I ask.
Because there are advantages, he says.
Like what?
He says, I think in pictures. So I can build battle mechs or giant robots in Google sketch up from nothing in less than a week. He smiles to himself.
Plus I rather enjoy echolalia. It's a joy in my life and he laughs to himself. Then starts his internal repertoire that I am sure is his own ongoing comedy skit.
While I type this he finishes his post to Facebook.
He wrote: As a person with autism, while autism comes with disadvantages, it does come with advantages. People just have to find these advantages within themselves. For example, my autism lets me see in pictures and I have used this ability to build giant robots with 3-d modeling software in less than a week.
He had me grammar check it for him. I do so without changing any of his words.
Now he's onto funny posts on the interwebs, laughing to himself.
It is I, the mother, who can't let this go.
Autism is not like cancer. For a person with Autism does not know what their life would be like without autism. If you took it away from them they would not think it was a gift from God as many people with cancer would. A person can lead a normal life and then by struck with cancer. They may even heal. Carry around scars and be stronger for the cancer that came and went. They may have had lasting friendships with no trouble. May have achieved in school, had a career, marriage and family without any strife what so ever.
As a mother I look to the future for my son with uncertainty. My husband and I plan for our son to live with us as long as
His friend posts back: I'm probably the most higher functioning side, but so am I. And yes there are advantages, but you don't have a choice, you take the disadvantages and what advantages that come with it.
What do you want to post back, I say. Do you agree?
Hmm as he eats away part of a baguette: Well I do agree that we don't have a choice in the matter, but we have to work with what we got here.
I battle internally with giving him my thoughts on that matter or letting him tell me more of his.
So are you going post back, I ask.
Humph he says scratching at the gap between the leaf and the wooden table. He checks his Facebook again.
I wonder if I should unfriend his mother. It is difficult to be a child of autism. It is just as difficult to be a mother of a child with autism. I have heard this mother scream and yell at her son that is my son's friend. I have heard her curse his PDD-NOS. I wonder if this boy curses his neurological difference because of his mother or his own actuality.
My son posts: while we don't have a choice in being autistic, we have a choice in making the best with what we've got.
Someone else posted before me, he says. It's really long and he read it aloud to me.
He asks, can I like a strangers post.
Yes, you can even send them a Facebook email and tell them that you saw their post. You have autism too and they might turn out to be a good friend, says I.
I kind of have a rule of not being friends with people on Facebook unless I know them in the real world, he says.
I try to explain about making friends via the Internet and how it can be helpful even if you never meet them in real life. How having autism in a smallish town, he may not get a chance to meet someone who sees having a neurological difference as a good thing. He goes silent.
My mom-ness pops up and I think, he's a good boy. I've bounced onto one his hard and fast rules and there is no way he is going to change his mind. This is an absolute. Yet he loves me too much to argue. The Love and Logic I've used for years is evident in this. Yet, because of the autism, he can't quite voice it. So he moves onto his homework that is next to his breakfast plate. He asks me if the Planet Comicon flier should be recycled or if I want to keep it.
He moves on. This is done for him.
As a mother this is not done for me.
I struggle with whether I want him to be with more people such as himself. I struggle with how others view him. I struggle with when to push against an absolute in his mind and when to leave it alone. Should I have sent him to autism summer camps? More like, should I have forced him to leave home to go stay a week with strangers in a strange place and strange foods where he feels powerless? No, I say to myself. Let him be who he is.
Adjust your perspective...Not everyone is normal and not everyone should be. May these posts help you teach, parent, and understand those who think differently than you.
Sunday, April 14, 2013
Sunday, February 10, 2013
Parenthood: Rights & Advocy
As a teacher, I work for the school district that employs me. I must follow their guidelines and their rules for writing and implementing IEPs (individual education plans). Having worked in 3 districts now, I know that each district does things differently. These 3 districts do things even more differently than my home district does ( where my own children who have IEPs go to school).
That being said, you are the parent. There is no greater voice or resource than you on your child. The special Ed teacher is the expert on finding ways to adapt the curriculum to meet your child's needs. The regular Ed teacher is the expert on the curriculum and the regular peers. The LEA (local education agency) -- usually the principal-- is the expert on what the district has to offer your child.
YOU are the expert on your child.
NEVER let anyone convince you that the other 16 hours you spend during the week, 48 hours on the weekend (not counting breaks, illnesses, and holidays) are not valid. You gave birth to your child. You carried your child. You raised your child. You will be there for your child when this set of teachers transitions your child to the next set of teachers. You are the constant!
In mathematical terms you are the x variable in the equation: y=mx+b
Y being your child's potential, m being your child's personality, disability,and abilities, b is their education. We teachers are merely and additional part of the equation. Parents multiply their child's potential! Parents make the difference!
As a special Ed teacher, I love active parents. I love having a parent come in and observe my work. I love their feedback! I work to please the student first and the parent second. Usually when I work to get growth out of the student, the parents are happy! Unfortunately, districts can mess that all up with their own rules, regulations, and finances. School budgets are a mess now, especially with no one wanting to pay the taxes necessary to educate the regular student, not counting the exceptional students!
Know as a parent that your view points are valid. Insist that your child get the appropriate education to help your child reach the regular curriculum. Every child can be taught. Every child can learn. The special Ed teacher's job is to assess and ascertain how to get your child there. Not every child can learn at the same rate as their peers, but that is what the IEP is about! The IEP is the plan to get your child on grade level. It is not simply enough for an IEP to be functional (life skills, daily activities, peer integration)! But an IEP must address the academic needs as well! How will this child be able to do mathematics? How will this child be able to read?
YOU, the parent have a right to ask these questions.
For further references who validate the importance of the parent check out:
The U.S. Department of Education, Office of Special Education Programs’ (OSEP’s) IDEA website: http://idea.ed.gov/explore/home
Parents' Guide to the Family Educational Rights and Privacy Act: Rights Regarding Children’s Education Records: http://www2.ed.gov/policy/gen/guid/fpco/brochures/parents.html
This is where you can find your official copy of parents rights in the state of Missouri:
http://dese.mo.gov/se/parentresources.html
This is where you can find your official copy of parents rights in the state of Colorado:
http://www.cde.state.co.us/spedlaw/download/2011ProceduralSafeguards.pdf
This is where's you can find your official copy of parents rights in the state of Kansas:
http://www.ksde.org/Default.aspx?tabid=2832
This is where's you can find your official copy of parents rights in the state of Arkansas:
https://arksped.k12.ar.us/sections/dss.html
This is where you can find your official copy of parents rights in the state of Nebraska:
http://www.education.ne.gov/sped/parentinfo.html
This is where you can find your official copy of parents rights in the state of Iowa:
http://www.educateiowa.gov/index.php?option=com_content&view=article&id=574&Itemid=510
Wright's Law is a disability advocacy law firm. They have a lot of plain English information about parents rights in the form of webpages, pamphlets, and workshops.
http://www.wrightslaw.com/
That being said, you are the parent. There is no greater voice or resource than you on your child. The special Ed teacher is the expert on finding ways to adapt the curriculum to meet your child's needs. The regular Ed teacher is the expert on the curriculum and the regular peers. The LEA (local education agency) -- usually the principal-- is the expert on what the district has to offer your child.
YOU are the expert on your child.
NEVER let anyone convince you that the other 16 hours you spend during the week, 48 hours on the weekend (not counting breaks, illnesses, and holidays) are not valid. You gave birth to your child. You carried your child. You raised your child. You will be there for your child when this set of teachers transitions your child to the next set of teachers. You are the constant!
In mathematical terms you are the x variable in the equation: y=mx+b
Y being your child's potential, m being your child's personality, disability,and abilities, b is their education. We teachers are merely and additional part of the equation. Parents multiply their child's potential! Parents make the difference!
As a special Ed teacher, I love active parents. I love having a parent come in and observe my work. I love their feedback! I work to please the student first and the parent second. Usually when I work to get growth out of the student, the parents are happy! Unfortunately, districts can mess that all up with their own rules, regulations, and finances. School budgets are a mess now, especially with no one wanting to pay the taxes necessary to educate the regular student, not counting the exceptional students!
Know as a parent that your view points are valid. Insist that your child get the appropriate education to help your child reach the regular curriculum. Every child can be taught. Every child can learn. The special Ed teacher's job is to assess and ascertain how to get your child there. Not every child can learn at the same rate as their peers, but that is what the IEP is about! The IEP is the plan to get your child on grade level. It is not simply enough for an IEP to be functional (life skills, daily activities, peer integration)! But an IEP must address the academic needs as well! How will this child be able to do mathematics? How will this child be able to read?
YOU, the parent have a right to ask these questions.
For further references who validate the importance of the parent check out:
The U.S. Department of Education, Office of Special Education Programs’ (OSEP’s) IDEA website: http://idea.ed.gov/explore/home
Parents' Guide to the Family Educational Rights and Privacy Act: Rights Regarding Children’s Education Records: http://www2.ed.gov/policy/gen/guid/fpco/brochures/parents.html
This is where you can find your official copy of parents rights in the state of Missouri:
http://dese.mo.gov/se/parentresources.html
This is where you can find your official copy of parents rights in the state of Colorado:
http://www.cde.state.co.us/spedlaw/download/2011ProceduralSafeguards.pdf
This is where's you can find your official copy of parents rights in the state of Kansas:
http://www.ksde.org/Default.aspx?tabid=2832
This is where's you can find your official copy of parents rights in the state of Arkansas:
https://arksped.k12.ar.us/sections/dss.html
This is where you can find your official copy of parents rights in the state of Nebraska:
http://www.education.ne.gov/sped/parentinfo.html
This is where you can find your official copy of parents rights in the state of Iowa:
http://www.educateiowa.gov/index.php?option=com_content&view=article&id=574&Itemid=510
Wright's Law is a disability advocacy law firm. They have a lot of plain English information about parents rights in the form of webpages, pamphlets, and workshops.
http://www.wrightslaw.com/
Monday, July 2, 2012
11th Day Rule
A student with an
IEP may not be expelled or suspended for more than 10 days of school without a
hearing. If a student is expelled or
suspended for more than 10 days, on the 11th day the student is
required to be given free appropriate public education (FAPE) to participate in
the general education curriculum and progress toward meeting their IEP
goals. The 10 days may be from one large
suspension or expulsion or may an aggregate of several suspensions or
expulsions. However, the law states on
the 11th day the student with a IEP is entitled to FAPE. If a student is removed from school for 11
days it is considered a change in placement from that in the IEP. There are mitigating circumstances and exemptions to this rule. This video while boring and a bit monotone, is very good at explaining the 11th day rule.
Wednesday, June 27, 2012
Free App
Kids Learning - Photo Touch Concepts
By GrasshopperApps.com
Open iTunes to buy and download apps.
Which girl is facing left?
Touch the ball above the line.
Touch the plate with less apples.
Find the star shape.
Touch the left strawberry
Which one is different?
This is another application for your iPad, iPod, or iPhone from Grasshopper Apps. I like this app creator because the images are usually vivid of photographic quality. This app is customizable in that you can decide which pictures you want from the library and which ones you don't want.
This app would be good for vocabulary or concept development. I plan to use it for teaching prepositions and directions.
Enjoy!
Monday, June 25, 2012
Temple & TED
Temple & TED
Is there anything better than Temple Grandin and TED? I think it must rank up there with peanut butter and jelly, chill and hot dogs, or macaroni and cheese. This video was shared by one of my professors. I watched it and smiled listening to the Temple I have enjoyed many times in the past. She touched the topics near and dear to my heart
- The different types of the Autistic mind
- The importance of Mentors
- The importance of Social Skills
- The importance of Sensory Issues
- The importance of lighting the spark to science
Wednesday, June 13, 2012
Down & Dirty on Data
Down & Dirty on Data
Before I can write an IEP, I need data.
Before I can evaluation an IEP written for my sons, I need to see the data.
Data is the single most important part of special education and yet is somehow the most overlooked. This is why the first thing I train a new paraprofessional to do is take data. The paraprofessional can not accurately discuss student behavior if she/he does not know how to observe it or keep track of it. It is my job to create the forms they use to track behavior.
Data drives the IEP.
Data drives placement.
Data drives accommodations and modifications.
Data drives the positive behavioral support plan. The problem is when data is not taken, gathered or observed until a student acts out.
Don't allow dirty data to muck up your program! Get everyone on the same page!
Friday, June 8, 2012
A mother's response to Less folic acid in pregnancy tied to autism: study
Less folic acid in pregnancy tied to autism: study
A mother's response
The article that I was linked to from my CEC SmartBrief: Hartford Courant
The article that I found when I Googled the title: The Chicago Tribune
The actual study when I Googled the article: American Journal of Clinical Nutrition
If you read the newspaper stories and compare it to the actual journal, you will notice the difference in language, tone, and statistics. As a parent or teacher of children with Autism, it is important to look for the source on any of the media put out on Autism. Newspapers want to make money. They make money by creating catchy headlines that sell their papers. They have no need to adhere to a fidelity of reporting of what is actually significant. A 38% decrease in the likelihood of autism spectrum disorders in the birth of a child is hardly significant to me. What does concern me is the blame on the mother.
As mothers, we generally do whatever we can to help our children. I know women who stop eating sushi while pregnant to those who change what they wear, change where they live and only eat organic food while pregnant. Still I know mothers who put their children on the DAN diet to 'cure' autism. It is always on the mother. This pressure the media and culture put on mothers needs to stop.
When I had my own son back in 1993, the current thought was the refrigerator mother idea. The idea that I did not bond with my child caused his autism was ridiculous. It killed me inside. I did some very crazy things in an effort to 'cure' my son. I put him through all sorts of faith headings. Each time it didn't work, I blamed myself. I did not believe enough. I did not pay enough. I was bankrupting my family to put my son through things that did not work.
As a mother I say, "Stop the madness!" Research what exactly an autism spectrum disorder is. It is a neurological difference. Then look at the research as to what has been proven statistically to work with children that have autism spectrum disorders. Chances are if there is no statistical methodology on the strategy or cure, then it does not work. Do not trust things that are not transparent. If a strategy or cure tells you that you are not an important part of the process, then it is not effective. The best strategies either require parental involvement or see parents as resources to create the process. Never doubt your power in your child's life to help them adapt to the non-autism spectrum disorder world. Never doubt that you can help. If any therapist, healer, teacher or doctor tells you differently, run away from them. Do not give them your money.
If you have a child with an autism spectrum disorder and you worry that your next child will also be on the spectrum, then by all means take the folic acid to decrease your anxiety. The less anxiety your feel the better no matter what gives that to you.
I've liked to this document in the past, but I will do it again. This 2009 document is the most concise document to list the current treatments in autism spectrum disorders. I have this document loaded on my iPhone, personal iPod and portable hard drive for easy access. Every time someone tells me of a treatment for an autism spectrum disorder, I look it up in this document to see it if the treatment is efficient.
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