Ten Things I Wish Were True

13 Friday Jun 2014

Posted by Ann Kilter in Achievement, Asperger's syndrome, Autism, Disability, high functioning autism

Tags

asperger's, autism, special education, wishes

1) Every child with a disability who is entitled by law to receive a free and appropriate public education (FAPE), receives one. This was not true when I was raising my kids. I heard stories at conferences, at advisory committees, legislative comment sessions, and on the internet. In this era of public school destruction, I fear the situation is even worse. (Federal Law mandates FAPE, but with the reduction in funding and the systematic destruction of our public schools due to corporate interference, I’m afraid FAPE is much more likely to be denied.

2) Your kids will always have a job because of their disability. The person who said this to me felt that her kids (brilliant) were at a disadvantage because they didn’t have special job protection under the law (discrimination protected status supposedly given to special classes of individuals due to race, disability, and sex). The unemployment rate of people with autism is above 50%.

3) I wish the liquid asset limit for SSI was raised. The amount for an individual is still at $2,000 and for a couple it is $3,000. This is not enough money to save to move to an apartment, or for emergencies that may come up. For us, it was not enough money to replace an engine in our van in the late 1990s. The amount has not been raised since at least 1994, when we started on SSI. One worker told me that SSI is welfare, that is why the limit is not raised. But as parents who raised two children with autism and one with learning disabilities, this asset limit left us in desperate straights more than once.

4) Every parent of a child with disabilities had a mentor, a coach, a village of helpers.

5) There was a cure for children with autism who have major impairments.

6) Employers would give high functioning adults a chance. And if the first or second person doesn’t work out, keep giving a chance to someone else until they find the one who fits.

7) Those who look down on our parenting skills would spend a day in an autism parenting immersion experience.

8) Immunizations really did cause autism. Then autism could be eradicated within a generation. Instead there are worse things which can be attributed to a lack of vaccines, such as infant death by whooping cough, death by lockjaw, heart disease caused by measles (my mother), etc. The causes of autism appear to be numerous.

9) Every person with autism would have a circle of friends. In high school, Will had the football team (who let be known that anyone who messed with him, messed with them), along with many others.

10) Every family affected by autism would have a fabulous vacation at some point in the journey.

How about you? What would be on your wish list?

Bravely Interfering

11 Sunday May 2014

Posted by Ann Kilter in Asperger's syndrome, Autism

≈ 2 Comments

Tags

asperger's, autism, Interfering, school board, speaking, special education

The kids were playing in the living room when the phone rang in the kitchen. I picked it up and held it tight to my ear, with my hand over the other ear to block out the chaos.

“Ann, the school board is trying to cut costs by cutting Ms. Smith’s job to half time,” said Barb, Will’s teacher for the preprimary impaired classroom in our district. “We need you to speak to the board about keeping Kindergarten staffing at the current level, so our kindergarten classes can remain small. If they reduce her job, the remaining classes will swell to 25 or more.”

So that evening, I told Ralph that I needed to go to the school board meeting. I had never been to a school board meeting. At that time in my life, I hated standing before a group of people to speak. The meeting was crowded, but I signed up on the list to speak before the board.

“My son has special needs, but he is going to placed in regular kindergarten this year in the name of inclusion. Let me tell you about my son. He cries and screams a lot, he enjoys turning the boxes of toys out onto the floor one by one all around the school room. He creates chaos where ever he goes. Can you imagine him in a classroom with 25 plus other kindergartners? If he is in such a large classroom, he may need to transfer to another school for a special needs kindergarten.” I looked directly at the school board member whose son would be in the same class as mine, “Do you want your child to be in a kindergarten classroom with my child?”

Then I sat down. I felt sort of bad because I had said true things about my son, making him look bad. But I put aside my personal feelings in order to convince the school to keep Ms. Smith on as a full time teacher. She retained her job. I did notice that the school board member’s son was in the morning kindergarten class and Will was in the afternoon class. Nevertheless, Ms. Smith was an excellent teacher for him, and he thrived in that classroom. Other students in our district also benefited from our interference.

After this I interfered in other public matters. I went on to attend and speak at public comment sessions when the state tried to cut funding for special education. I also served on special education advisory committees in our district and in the county.

Great things can be done when Moms (and Dads) rise up and interfere.