Tag Archives: high functioning autism

The Family Hero

04 Sunday Nov 2012

Posted by in Asperger's syndrome, Autism, diagnosis, Disability, high functioning autism, Thankful, Transition issues

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Ralph, my husband and father of our children, is an unsung hero. Well, today I am writing his song of praise.

When he became a father 26 years ago, he took on the challenge with aching love and trepidation. Three months after Mary was born, I went back to work at a bookstore. I came home one evening to find him sitting on the couch, white as a sheet. It was his first experience with an evening of full blown colic. Mary had screamed for three hours before she calmed down. After seeing the doctor to find out why she was screaming, he found ways to comfort her. He walked her outside back and forth for hours, while singing the song he made up for her.

Nighty-night time

Nighty-night time

Nighty-night time for my Mary

Nighty-night

Sleepy tight

I lo-ove you.

He was the one who developed a bedtime routine for our kids…bath, a story,  nighty-night song and tuck-in. The kids would read stories with me during the day, but at bedtime, they wanted their Daddy. For Ralph, they would settle down and go to sleep.

Ralph supported breast feeding by helping out around the house. He cooked dinner. He distracted the older one(s). He wanted to do what he could to ensure that our kids got the best start in life.  Without his support, our kids would not have been breast fed, for about a year each.

He cleaned up after the kids when they were sick.

He got on the floor and played with them.

When Ralph came home from work, he wanted to hear about our day. He listens, intently.

When our kids were in the process of being placed in special education, his was heartbroken. He has learning disabilities, so he blamed himself. Before the initial IEPC for Will, he didn’t want to go because, “I don’t want to hear what they say is wrong with my little boy.” He went anyway.

He worked to understand autism after we received the diagnosis. He encouraged me to go to conferences and workshops to learn more about autism so that we could help our kids. He helped with at-home therapy. He told me over and over how he appreciated the work I was doing with the kids.

When I told him that understanding humor, and differentiating between kind teasing and malicious teasing is difficult for people with autism, he used his joking and story telling talents to help them…for years.

He adjusted his work schedule so that he could pick them up after school or take them to appointments when I went back to school, and when I started working full time. For the last 12 years, he has been getting up at 3:00 a.m., so that he is available after 3:00 p.m.

He models faith. He shows his love by talking to them and playing games with them. We are a close family and Ralph is the anchor.

He has gone to nearly every one of Will’s concerts and band competitions. He took Patty to her art competitions.

He used his vacation time to be with the kids over Christmas break. He used his vacation to go with Will to band camp for three years, to go on youth retreats and spring break mission trips with Mary, Will, and Patty.

He has worked to support his kids even in the face of daunting health problems. His medication for his blood disorder makes him so tired. For two years, he had an very painful ulcer on his leg. He went to work anyway, to support his family.

When our kids went to college, he picked them up, and found additional opportunity to talk to them and influence their souls.

Now the kids are stepping toward independence, their own lives. Will left home and Ralph has worried and ached for him. Ralph put together furniture for Will. He teaches Will his favorite recipes.

Will called Ralph for advice. Last week, he called Ralph to find out how to cook meatballs.

Ralph often praises me. He, however, is the family hero.

Battles

29 Saturday Sep 2012

Posted by in Achievement, Asperger's syndrome, Autism, diagnosis, Disability, faith, high functioning autism, Independence, Support, Thankful

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That urge to protect my children, to advocate for them, awakened the she-bear in me.

We take life day by day, just like everyone else. One of the things that helped me along the way was the day that I realized that others fight their own battles as well. Other people sometimes feel lost along the way, but we parents of autistic children are too busy and overwhelmed with our own battles to see what others deal with. Yes, I had to raise a runner, a loud awkward young man and a quiet, compliant girl who was easily ignored by her teachers, even though she could not read or write or tie her shoes until quite late. My son sucked up the attention because he was very disruptive in his main streamed classroom. But I developed backbone when my daughter was going to be placed in a very, very inappropriate setting.

Sometimes I was envious of how easy other parents seemed to have it. Jealous that their kids were in/understood sports. Resentful that I had to spend all this time taking my kids to therapy instead of girl scouts or soccer.  But as my kids grew up and became more independent and I had a chance to catch my breath, I looked around and saw parents dealing with drug abuse, alcoholism, and depression. My sister has had to deal with mental illness in two of her children. A young woman in our church has just found out that one child is diabetic and another has heart problems.

It is undeniably tough to be a parent of autistic children, and some in my community put me on a pedestal (distancing me from my peers). They say, how did you do it? Even, how can you stand it? You are an amazing mother. Yes, it sounds good, but I still had to deal with the dailiness of always training, always trying to predict what was going to happen and try to prevent meltdowns and/or awkward moments.

In  the end it is worth it. You can do it. You are doing it. The truth is, though, my house is a mess. My garden is in woeful shape. I have spent myself for my children, and that is more important than a clean house.

Driving – a dream released

21 Friday Sep 2012

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

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Mary started on-the-road driving instruction yesterday. Her instructed said that if today she doesn’t improve greatly in her ability to turn the wheel, she will not be able to continue. This was quite distressing to her, and I will admit, to me as well. She spent at least six months trying to get driving instruction lined up with the local driver’s rehabilitation program.

But my desire is that the answer from the driver’s rehabilitation program will be clear. Can she learn to drive or not? My feeling is that learning to drive may not possible.

Update:

This afternoon Mary texted, “No more training.” I texted back that I would leave work and pick her up and bring her home. I didn’t want her to be waiting too long at the scene of disappointment.

In the car, I asked, “What did your instructor say?” She said, “I couldn’t push the brakes at the right time, or turn sharp enough. It isn’t her fault, it is my autism.” Mary told me that she planned to do the dishes and laundry when she got home.

I dropped her off, and went back to work. I struggled emotionally at work. There are some limitations that just cannot be overcome.

Shortly after I came home, I was talking to Ralph, and I thought I heard someone downstairs doing laundry and singing. When Mary came upstairs, I asked her if she had been singing. She said she didn’t know all the words. but she was singing a worship song.

Maybe she is relieved that she doesn’t have to learn to drive, even though she really wanted to learn. Now, she says, she can look for work in her brother’s city. They have a much better bus system. Her brother likes that idea.

Mary will start paid work in October.

15 Saturday Sep 2012

Posted by in Achievement, Asperger's syndrome, Autism, diagnosis, Disability, faith, high functioning autism, Independence, Transition issues

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Mary came home last week with the happy news that she will be starting paid work at the homeless shelter where she has been volunteering two days a week for the last year. This is full time, temporary work during the “giving season.” It will last from October through mid January.

They gave her a chance to practice her skills in accounting on a regular basis. Now they will give her a chance to be paid for it. Volunteering can lead to paid work.

And next week she will start on-the-road driving instruction in at the local rehabilitative driving school.

What Ships Are Built For

07 Tuesday Aug 2012

Posted by in Achievement, Asperger's syndrome, Autism, diagnosis, Disability, faith, high functioning autism, Independence, Miracles, Support, Thankful, Transition issues

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2,000 miles. It is breath taking. Will will be flying to San Francisco next week for more training. Then he will be working on a long term project in web development.

When we took him to the interview 70 miles away, there was the risk that he would move away, and it happened. When he was offered the position as an entry level web developer, there was the risk, in fact the certainty, that he would travel for his job.

Now, he is traveling to San Francisco. The project manager really wants him to come San Francisco and not Chicago. He interviewed well, the project manager told him.

A ship is safest in the harbor, but that is not what ships are built for. (John Shedd) This saying has been in my email signature line for the last 10 years or so, to remind myself daily that I cannot keep them in the harbor. Oh, the internal struggle of parents of high functioning autistic adult children.

But to keep them in the harbor is not healthy for them or for us. We have constantly talked to our children about their futures, creating expectations in their minds and ours. When Mary told us that she should not have to sweep the floor because she wasn’t very good at it, I told her that she needed to practice for living in her own apartment. Not if, but when. When you go to college, we said. When you get a job, we said.

Now the rubber meets the road. I hope the preparation and the training are enough to help him through. It is wonderful, yet exhausting. We will be gripping our seats for his next steps. So I pray, pray, pray for his safety, that everything goes smoothly,  but I resist the urge to tell him he can’t go. I don’t know how he is going to manage it, so I pray. And we encourage him to seek advice, to talk to others to prepare himself. Our time of preparing him is over; he is responsible for his own path.