Category Archives: diagnosis

Like Father Like Son

30 Tuesday Apr 2013

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

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During one of our weekly telephone conversations, Will told me that he was eating sausage and green beans. “See,” he said, “I am eating a vegetable.” And then he told me that the reason he didn’t eat many vegetables is because he cooks like Ralph cooks. When Will first moved away, Ralph spent some Saturdays at his apartment teaching Will how to cook Will’s favorite meals.

Ever since I went to work in 2004, Ralph has been cooking the majority of the weekday suppers. This is because 1) he knows how to cook and 2) he gets out of work at 2:00 p.m., whereas I usually work until 5:00 p.m. or later. Ralph pushed me to work full time, so I told him that if he wanted to eat before 8 p.m., he would have to cook.

Ralph’s repertoire of meals*** include spaghetti and garlic bread, chili mac, chicken nuggets and fries, breaded fish from the freezer and fries, meatballs with barbecue sauce and tater tots, sausage and green beans, tacos, pot roast with carrots and potatoes, turkey with stuffing, barbecue (made with ground hamburger) on a bun and tater tots, hotdogs and steak on the grill with french fries. Will told me that since Dad didn’t have many vegetables in his cooking, he didn’t either.

One of the nuggets of wisdom I managed to catch from the conferences, meetings, and self-education regarding autism when my kids were growing up was that our kids have autism, but they are also like their parents. They will have their parents traits. It was a reminder to think about that fact that their autistic traits were not everything.

So Will tends to learn along black and white lines, which in some ways is good for computer programming and calculus. His creativity seems to be along those lines as well.  I tend to think like that in terms of my work at a law office.

Patty told Will last night that her theology professor told her that she was a better student of theology than Will was (they went/are going to the same small Christian college). In part, this is because she brings her depth of understanding as a history major to the subject, along with her willingness to challenge her teacher on his positions. She is a conservative fundamentalist, in a truly historical Calvinist way of thinking. Ralph picks her up from college and they have highly entertaining (to them) discussions. Patty says he thinks deeply about these things. Ralph majored in Bible and pastoral studies in college.

Some characteristics our kids demonstrate have nothing to do with autism, and owe more to their parents’ traits.

***My meals include chicken and dumplings (carrots, onions, potatoes, corn), baked tilapia with rotini and a vegetable, salad, chicken nuggets and fries and a vegetable, baked pork tenderloin and rice and a vegetable, crockpot Boston Pork roast and rice and vegetables, etc. Sometimes when Ralph and I discuss what to have for supper, it is really a discussion about who is going to cook supper.

World Autism Awareness Day – Going beyond awareness

02 Tuesday Apr 2013

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

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Today is 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.

Autistic Spectrum Disorder

01 Monday Apr 2013

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

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Very soon now, most of the autistic diagnoses will be gathered under one umbrella: Autistic Spectrum Disorder. I don’t know if that will make it easier to get services or more difficult. I do think that condition of our schools and budget changes will make it much more difficult for parents of modest means to get services for their children. But at least it may make it easier for all to spend less time defining their diagnosis as one or the other.

When Will was diagnosed with extremely high functioning autism at the age of seven, I did not want to accept it. That was 18 years ago. I said to the child psychiatrist, “Maybe he has Asperger’s syndrome.” He said to me that this was not something that I should want for him. He had trained with Dr. Luke Tsai at the University of Michigan in the Asperger’s clinic, and he said he knew the difference between the two. My older daughter was diagnosed with PDD.NOS, which I did not realize was on the spectrum. I kept wondering why they treated her as autistic, but I did know that she was more disabled that my son.

I have not been very involved with autistic support groups or activists, in part because I didn’t feel accepted. There was a lot of pressure to purchase the latest therapies (some of which have now been proven useless), and I could barely afford any of it for one child…which child should I choose? A difficult moral question. So we went our own way. I went to conferences and workshops, and I learned a lot and applied it. Sometimes therapists would suggest to me that Mary had Asperger’s because of certain characteristics of same. But I would come back with, “She was below the 1st percentile for speech development through middle school.” I think there was some fluidity in these diagnoses and much controversy. Now the diagnoses will diagnostically disappear.

I have also not been involved because I have been busy since 2005 taking my children back and forth to local colleges. Will did not learn to drive until he was 22. Mary may never learn to drive due to some comorbid conditions due to lack of oxygen at birth. At any rate, the local rehabilitation driver’s program says she cannot drive. So I have not been involved in the autism community for several years due in part to time constraints. Now that Will and Mary have graduated from 4-year colleges, I may get involved again with groups for adults  in the area for Mary’s sake. I have more time to drive her there.

When my kids were in elementary school, it was easier for us to access services due to the fact that they received what was perceived as a more severe diagnosis. Parents of children with Asperger’s were still in a battle with the system to get any kind of services or accommodations for their kids, even though many of their needs were the same and sometimes worse than what we were dealing with.

Perhaps this change in diagnosis will make it easier for students with the Asperger’s diagnosis.

The Journals

23 Saturday Feb 2013

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

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In the summer of 2011, I decided that I wanted to start writing. Actually, writing has been on the back burner since my children were placed in special education in 1991-1992. It has been my secret dream. Well, not so secret. My husband has known since before we were married. My parents and siblings have been aware of my dream of being a writer ever since I was a young child.

Even though I didn’t pursue writing when my children were young, I did keep journals. My journals were a way keeping the dream alive, while also serving a therapeutic function. They were not great literature by any measure. Many of the entries are mundane: Christmas lists, budgets, devotions, how I spent too much money, how a car repair delayed buying winter boots, etc. More importantly, over half of the content is about our journey with our kids: descriptions of of their developmental differences, diagnoses, therapies, emotional struggles, conflict regarding their educational services, IEPC meetings, turmoil regarding medication, etc.

Most of this blog has been written either about current events in our children’s transition to adulthood, or looking back from the perspective of accomplishing much of our long term goal of independence. These journals looked forward to a future that I hoped for, struggled toward, and could not have imagined.

When my kids began to be able to read, my journal writing tapered off. I didn’t want them to read about themselves and be embarrassed. So I took the journals upstairs and put them all together in a box. I hid them away. I have thumbed through them briefly a few times in the last 12-15 years.

Tonight I finally brought the large box of my journals downstairs and put it next to my computer desk. I am ready to look to the time when I was looking forward.

I am ready to read the real time descriptions of our struggles. I remember that Mary’s language development didn’t fit the typical progression, even for children with delayed language development. I remember bits and pieces regarding her language development. But I also know that I wrote down language samples (an influence of my linguistics training in college)

I expect that this will be an emotional process as I relive the past. However, the accomplishments of today are due to a myriad of small steps and repetitive successes. The story of transition would not be complete without a description of how we got here.

Weakness – Part 1

03 Sunday Feb 2013

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

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I have been called a weakling. First, by other children taunting me on the school playground and then chasing me home shouting “weakling” and throwing stones at me. I was bullied from kindergarten through the fifth grade until we moved to a new city. There, to my relief, I was able to fade into the background.

Second, I called myself a weakling when I struggled with depression in my 20s, many miles from home at a major state university.

I called myself a weakling when I could not stop the tears from slipping down my cheeks during  early special education planning meetings with my children’s teachers, therapists, and special education administrator. The focus seemed to come down overwhelmingly on the balance sheet in terms of my children’s weaknesses. Their speech and language deficits, their fine and gross motor skills deficits, their social skills deficits, their auditory processing deficits were written out in excruciating detail.   The list of their strengths seemed to be a mere formality…a grasping for anything to write down on the credit side.

Those people who say that God only gives you what you can handle don’t read the Bible deeply or broadly. As I was bringing up my children, I was certain that the Lord was giving me way more than I could handle. I was too weak to bear this burden.

But the Bible is full of people who were too weak to bear what God had given them.

Paul, the apostle struggled with weakness in the face of a serious health problem. He came to God.  “Three times I pleaded with the Lord to take it away from me. 9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”

David, the king of Israel in ancient times, spoke about God’s understanding of our weakness.

13 As a father has compassion on his children,
so the Lord has compassion on those who fear him;
14 for he knows how we are formed,
he remembers that we are dust. (Psalm 103)

Again, David acknowledges weakness in Psalm 61: 1-2 (NIV)

“Hear my cry, O God;
listen to my prayer.

2 From the ends of the earth I call to you,
I call as my heart grows faint;
lead me to the rock that is higher than I.”

When faced with the cross, Jesus cried out in anguish to God, ““Father, if you are willing, take this cup from me; yet not my will, but yours be done.” 43 An angel from heaven appeared to him and strengthened him. 44 And being in anguish, he prayed more earnestly, and his sweat was like drops of blood falling to the ground.[c]” (Luke 22:42-44 NIV). He needed to be strengthened to go on to carry out the work of the Father.

The gospel itself is a testament to our weakness before God. We are utterly unable to save ourselves by our own strength.

“For while we were still weak, at the right time Christ died for the ungodly.For one will scarcely die for a righteous person—though perhaps for a good person one would dare even to die— 8 but God shows his love for us in that while we were still sinners, Christ died for us.(Romans 5: 6-8).

I was drawn to Jesus when I was nine years old, in part because I knew that He understands what it is like to be taunted and mocked. He understands weakness. He understands suffering.

God gave me a counselor to help me during the time of depression at the university…a perfect fit. She called me strong for seeking help. But that is all that I could do at the time. I failed 2 out of 4 classes every quarter that year, but I stayed at the university for the counseling, and I was healed.

The team of teachers were very concerned for me as I could not hide my weakness. But God gave me strength. He led me to others who helped bear my burdens.

28 “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. (Matthew 11:28-29)