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Category Archives: high functioning autism

Ten Things I Wish Were True

13 Friday Jun 2014

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

≈ 7 Comments

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?

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I Can’t Park Straight

25 Sunday May 2014

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

≈ 2 Comments

Tags

asperger's, autism, parking, strengths, weaknesses

My parking skills are fodder for family jokes and general snarking.

I avoid parallel parking as much as possible. I have been known to abandon an event if I can’t find an easy place to parallel park. At the age of 50, one of my friends taught me how to parallel park, and I was able to do it, sort of. I consider getting within 12 inches of the curb a victory. At an angle, mind you.

I admit it, I am the person guilty of pulling into a pull through parking space and not pulling through far enough. So I have developed the habit of pulling through and matching my door to the car next to mine.

“Mom, try again.” “No Mom, that spot’s too small. Try another one.” “Well, it’s not that crooked.” “I guess that’s good enough…not bad for you, Mom.”

Parking is not my strength, as anyone in the family will tell you. I have developed strategies for coping, though, and I get on with life.

My strengths are writing, spelling, analysis. I enjoy getting together with people in small groups or one on one. I hate large, noisy events…where I can’t hear or make myself heard. Although I can do math, I am not the extra credit kind of gal. My hand and eye coordination is atrocious – when the Zumba instructor says move right, my body moves left – bumping into the person next to me. I am that person.

Mostly, I muddle through life, It’s okay to say, that’s good enough. Or I am unable to do something, and that is okay.

We all have strengths and weaknesses. Very few people are actually well rounded and good at everything. Our autistic kids are the same way.

We knew early on that Will was not going to be an athlete. In a way that was advantageous for keeping him safe – he was no Houdini. He didn’t climb the cupboards, or open windows. He stayed in his crib because he fell out once and that hurt. Will never hurt himself the same way more than once. He never tripped over the same thing twice. That was a indication of one of his strengths – his visual memory.

We also knew early on that Will had strengths in music, so we encouraged that with piano lessons. There are books for kids who don’t know how to read. He was a late reader, but that quickly developed into a strength.

So early on, be alert for your child’s strengths. It is important to work on some of our children’s weaknesses, enough to help them cope. If tying shoes is not to be, velcro shoes are an acceptable option. Maybe athletics are a strength, but learning to read enough to cope, is good enough. Will never learned to ride a bike. Learning to swim was not learned, due in part to sensory issues. He can live his life without knowing how to swim. It’s not ideal, and he may learn it someday. Mary’s spelling is atrocious, but she can read. Before she could read (8th grade), she coped by listening to books on tape, asking others to help, and always ordering a chicken sandwich from the menu.

One of my weaknesses is parking, which members of my family would be delighted to tell you. But I’ve learned how to cope, and put up with the joking. I am willing to say, that’s good enough, I’ll try again, and sometimes I give up for today.

Mary’s Wishes

07 Monday Apr 2014

Posted by Ann Kilter in Asperger's syndrome, Autism, Disability, high functioning autism, Independence, Transition issues

≈ 20 Comments

Tags

independence, independent living, transition

The receptionist at the law firm where I work told me that she will have no children at home within the next six months. Her daughter with the baby is interviewing for special housing, her son is moving in with friends in May, and her youngest is moving into her own apartment to attend college in August. What a change that will be for her and her husband. The empty nest may come upon Ralph and me sooner than I think. Will is already gone. Patty plans to leave in a year or so after graduation this spring to go on to graduate school. And Mary wishes to leave as well.

On Saturday, Mary went grocery shopping with me. Usually, when I drag one of the girls out to the grocery store, we also go out to eat. I started taking my kids out individually for lunch or breakfast on a rotating basis when they were in their early teens, so that we could talk without the other ones butting in. Both Will and Patty were talkers. At first, getting Mary to carry on a conversation was halting, difficult. She would not look at me. Her voice was so soft, I could barely hear her.

At Steak and Shake, Mary informed me that she was looking forward to moving to her own apartment. I said that she would need an apartment that was within a short distance to a bus stop and shopping. I suggested that she might want to live with her brother, Will. She shook her head. She doesn’t want to live with Will, she wants to do what Will has done, have her own apartment and her own life.

In order to move away, she said she needs to get a steady job. Then she told me that she was going to an interview at Goodwill on Monday. They have a training program for a high tech call center. Surprise! I don’t know if she has the ability to learn C++, but she does keep the computers running around here.

After we came home, I told Ralph what Mary had said. I started looking on the computer at apartments in the area. Talking about where Mary would shop, how she would get around and how she would get to work. He said, “Wait, one step at a time. You never know, she might get married.”

“I can’t wait,” I said. “How will she get groceries, go to the dentist, go to the doctor. We have to think about these things. Plan for her.” But this isn’t my job or my place. I have to let go to the extent that we can.

The truth is, Mary is making plans, taking steps to make her wishes come true. She has been planning for years. Even though she can’t drive, she is going to ride the bus to her interview tomorrow and back. She can get around.

Mary can take care of herself, in many ways better than her brother could when he moved into his apartment. She does laundry, cleans house, and cooks. She has accepted the fact that she cannot drive, so she plans to get around on her own. We have insisted that she try to find a job which is easily reachable by bus. As tempting as it is to say we would drive her to job inaccessible by bus, her independence is dependent on the bus.

Living Room

Above is a picture of Will’s apartment after he moved in. To say his furniture was sparse is an understatement. But Mary has her own bed, a recliner, desk, office chair, TV, bookcases. I would encourage her to buy dressers, lamps, etc.

Mary is vulnerable, and that is one of my fears. But I must let her go at some point, whether it is to supported living or totally independent living.

A year or two ago, I dreamed that Mary had moved into her own apartment, and I walked through her apartment looking at her cupboards to make sure she had enough food. I opened the refrigerator door to peak in, to see how the food supply was. I went through the same process with Will after he moved. After a while, I stopped prying into his cupboards, except now to ask where he keeps the sugar or coffee filters.

My wishes are that she would be safe, and able to take care of herself. Mary’s wishes are to be independent, have a job, make her own life. I need to step back and let her live her life. To leave the harbor, so to speak. That is what ships are for, even for Mary.

World Autism Day – Going Beyond Awareness

03 Thursday Apr 2014

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

≈ 5 Comments

Tags

asperger's syndrome, autism, autism awareness, disability, going beyond

Tuesday was World Autism Awareness Day. The color is blue.

Do more than be aware.

Hire a person with autism.

Befriend a person with autism. Will’s first friend in fifth grade meant the world to him, and to us. Many befriended him in high school and in the church youth group. Mary had more difficulty making friends.

Befriend their parents; having a child with autism can be very isolating. Befriend their siblings.

Support autism research and autism support groups.

Provide respite if you can, or a meal. Raising children with autism is exhausting and at times, lonely.

Maybe they ought to change the name to World Autism ACTION day.

Courage is Contagious

31 Monday Mar 2014

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

≈ 5 Comments

Tags

ASD, aspergers's, autism, Autistic spectrum disorder, courage, disability

Courage.

Some days, some months, some years, it takes courage to get out of bed and do the job of raising our children with special needs.

The Merriam Webster Dictionary defines courage as “mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty.”

That pretty much sums it up.

Some days it takes courage just to get dressed, get our kids dressed, and get everyone where they need to go. Sometimes it takes courage to face special education committees to advocate for your child. Sometimes takes courage to advocate for our kids to the youth group leader, Sunday school teachers, summer camp leaders, neighbors, family, school, etc. Etc. Etc.

Sometimes it takes courage when a day has been a complete and utter mess, exhausting everyone, to get up the next day and start again.

But, when you live your life with courage, others are encouraged.

When my children were young, sometimes tears would slip down my cheeks when discussing my children’s difficulties. I am sometimes an overly emotional person. I can’t always keep smiling in the face of difficulties. Actually, I can rarely keep smiling in the face of difficulties. That’s not me. During these meetings sometimes my kids’ teacher consultant or social worker would tell me that they would bring me up as an example to other parents. I didn’t really believe them. I thought they were just saying that because of their discomfort with my emotions.

I was reminded of those meetings when I visited with my parents at my brother’s house this weekend. My sister also showed up from the other side of the state. She is a nurse, with wildly varying hours, so it is not easy to see her, or even talk to her on the phone these days. (She ended up having to leave early because she is on call for two weeks). While we were talking about her youngest son, she mentioned that she knew how to advocate for him because of our many conversations when my kids were young and watching how I handled my kids. She told me that he has some autistic features. “He has autism?” I said. She nodded. Thinking back on it, I can see it in him. He is in his third year of college planning to go into computer programming. He is on the high end of the spectrum, so they didn’t realize what they were dealing with until much later in his education.

My courage encouraged her. Your courage will encourage others…even if you can’t see how.

courage-to-continue-mcounts

 

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