Tag Archives: asperger’s syndrome

Moving

09 Saturday Jul 2016

Posted by in Asperger's syndrome, Autism, cancer, faith, high functioning autism, Independence

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Well…

Things are changing quickly. On Saturday, on our way to go fishing, I said to Ralph, “We should take some money out your 401k to help Marie make a down payment on a condo.” He was open to the idea.

The next morning, I said we should look for a condo. He said there was no way we could find a suitable condo in our price range. I said to him, “God has provided for us in so many ways. He provided the money for you to go to college, and you graduated from college with no debt. He led us to this neighborhood where our kids received an excellent education in a tiny school district. Our kids were more successful than we could have imagined. God provided the funds for them to go to college. Don’t you think that if he has been faithful with that, he would be faithful for our need to find another place?” (I went on to list more instances of God’s provision for us in our lives.)

Then he went to the computer and started looking up condos for sale. “Here’s one we could afford. Two bedroom, two bath.”  That is, one that Marie could afford. We cannot get a mortgage due to our debt and medical bills. We showed the condo to Marie, and suggested we go over and look at the outside of it.

I wrote an email to a real estate agent that we have been working with for the past six months. I told her about Ralph’s cancer and wondered if Marie would be able to buy a condo, and we could move in with her and pay rent to her. She emailed me back and said that it wasn’t likely because the real estate market here is so hot…and some condos are getting 20 bids with some bids exceeding appraisal values. She doubted we could find anything soon.

45 minutes later, she called me and told me about the same condo that we were planning to look at the outside of. We went over with them and instead looked at the inside and outside of it. Nice. Very nice. It has a den/dining room with french doors that we could use for a clean room should Ralph’s white blood cell count dip to dangerous levels. Two full bathrooms, two bedrooms. A gas fireplace. And only two miles from Marie’s job.

Out in the car we all agreed that we liked it and should make an offer on it. We made an offer on Tuesday night at the full asking price. At 6:30 the next morning, our real estate agent told us that the seller accepted Marie’s offer, but only if we could sign the acceptance by noon. Marie did that. Now she is going through the process of getting the mortgage. Next week are the inspections. Then the appraisal. Then hopefully the closing not too long after that.

Then we move out of this old house. Now to choose what to take, what to sell, and what to throw away. The thought is overwhelming. Will is planning to take our old dog, Daisy, and one of the old cats, Chris. We will take the old cat, Mistletoe and the two younger cats.

Then we sell this house. We are downsizing. We won’t even “own” our own house. But we will have a place to live. And Marie, although she is qualified for this mortgage and has excellent credit, will find it easier to pay the mortgage and other costs with us paying rent. She could have the condo paid off fairly quickly. Marie told us a few months ago that she did not want to live alone. We are very fortunate to have her as a daughter. We never imagined that our daughter who spent 13 years in special education, but went on to obtain a college degree in accounting, would come to our rescue. We are praying that everything goes smoothly with no hitches.

home-sweet-condo-retro

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Life on a Tether

21 Saturday Feb 2015

Posted by in Autism

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“You’re tethered, aren’t you.”

My friend said this to me when I told her about Mary’s new job, which is ten miles away from my house, through many stoplights (There is no freeway to get there). “How is she going to get there?,” she asked. “I will drive her there before work and Ralph will pick her up after work. Riding the bus is an hour each way from our house, so that’s the plan for now.”

“Yes. I guess I am.” Tethered, that is.

I have been digesting this for the last week. Mary’s new job means that our schedule, our time off, must coincide with Mary’s time off. Ralph has now recovered enough to drive, so he can help with her transportation. Which means that I can work late to make up for the hours that I spend at Rick’s appointments.

Sometimes over the years, I have struggled with discontentment. Frankly, it is a common struggle for parents of children with autism (ours), and other disabilities.

When my friends show me their pictures of their vacation to the Tetons, Florida, Hawaii, I dare not let myself think about going there myself. It would be too difficult to manage. The same way, early in the journey with our kids, I dared not let myself dwell in the dark cellar of envy when my friends and family bragged about their kids’ sports accomplishments, scouts, graduating to a two-wheeled bike, etc.

So I set my mind to expect that we would be tethered to our kids long after our peers were free to travel, go on vacations, go on cruises, etc. When our peers sent their kids off to college, we were still driving our kids to college. Five days a week, September through early May for eight years. Our schedules were dictated by our kids’ needs. We have never taken a week’s vacation away from our home. We occasionally have rented a cabin for three days (when they were in college), and camped in our little pop-up camper when they were younger for three or four days at a time. We have visited our relatives for a few days a couple of times a year for several years. But that was no vacation.

We could not go on an extended vacation or even think about going to Florida to visit my parents because 1) we could not afford it due, in part, to the cost of our kids’ therapy over the year, and 2) the logistics of all the preparation to get there.

But If I let myself dwell on the freedom and vacations my friends enjoy, I will end up tainting, poisoning, muddying the joy which God has prepared for us. Teddy Roosevelt said “Comparison is the thief of Joy.” And there has been joy and happiness in our journey.

Our kids graduated from high school, and then college. All three of them. Our goal from early on has been independence to the degree possible for our kids. We are almost there. Mary started her longed-for job two weeks ago, and we are committed to her success because it means she may be able to support herself and live on her own. Patty lives at home with us because we are supportive of her goal to go on to graduate school and study history. Will has moved away from home, and his good job has led to the purchase of his own house. Today we are planning to go to his city and help him move. Ralph can’t do any lifting, but he can help with Will’s cats. That is his job for today.

Our commitment to our kids well into adulthood also has other effects on our life decisions. Ralph’s doctors have not found the cause for his overall decline in health for the last several years. Our doctor (PCP) has now suggested that he go to Mayo or Cleveland Clinic for evaluation regarding his blood disorder, thrombocythemia. Our doctor has discussed Ralph’s conditions with other doctors in the area, including a hematologist with years of experience. This is possibly the next step.

Ralph’s first reaction was “No. We can’t afford it.” My first thought was, “how can we manage it logistically. How can we get Mary to her new job if we have to travel for Ralph’s evaluation?” Not what would be best for Ralph’s health. Our tether influences all of our decisions. We are care givers. I am a care giver for Ralph, as well. We have not even begun to consider the other costs versus the benefits. Will it make any difference to his treatment? What will the doctors at Mayo or Cleveland Clinic be able to tell us that would help improve Ralph’s health? There are only two treatments for thrombocythemia. Ralph has used the best one for 27 years. I don’t know what to do. We need wisdom, brothers and sisters. (James 1:5)

tether

Again, I return to I Thessalonians 5:16-18.

16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.”

By faith, we look to God in our circumstances. Giving thanks is an act of faith. Prayer is an act of faith. Rejoicing is an act of faith.

By faith, we believe that God’s providence is active in our lives. So we will wait on Him.

And today, we are planning to travel about 100 miles to help our son move into his new house. That is our joy for today.

Comorbidity – Rodgers

26 Monday May 2014

Posted by in Achievement, Asperger's syndrome, Autism, diagnosis, Disability, Not autism

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I was alarmed when I heard that Elliot Rodgers had been diagnosed with Asperger’s Syndrome. That was one of the first things I heard about Adam Lanza after he killed 26 at an elementary school in Connecticut.

The media gloms onto a diagnosis in an effort to make sense of the unexplainable, the incomprehensible. Unfortunately, it has the effect of casting others with the diagnosis in a very negative light. When unenlightened people hear a child has Asperger’s syndrome, or a future school, or employer, the word may cast aspersions on those who have the diagnosis. Accommodations? Why might you be needing accommodations?

When I saw the videos of Rodgers, I said to my kids, “He can’t have Asperger’s syndrome. He doesn’t strike me as a person with Autism.” He does strike me as a person who is very seriously mentally disturbed.

I could be wrong, this could just be Asperger’s in its worst form, but I don’t think so. If he did have Asperger’s syndrome, it almost certain that it is comorbid with other conditions. When my daughter was placed in an autism classroom, I became aware that having autism does not insulate you from other insults to the brain and body. Mary had classmates who were also blind, also epileptic, and/or mentally impaired. Mary has very mild cerebral palsy and severe learning disabilities, along with autism. When two or more conditions are present, they are said to be comorbid. My daughter had autism and the comorbid conditions of learning disabilities and cerebral palsy.

Adam Lanza’s father said that he doesn’t believe that Asperger’s Syndrome was the cause, that other mental problems were the issue. (http://time.com/19957/adam-lanzas-violence-wasnt-typical-of-aspergers/).

Elliott Rodgers may have Asperger’s Syndrome, but in my opinion it is very clearly comorbid with severe mental illness. We may find out that he was misdiagnosed, as some claim about Adam Lanza.

 

 

 

 

World Autism Day – Going Beyond Awareness

03 Thursday Apr 2014

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

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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.

Weakness – Part 2

13 Saturday Apr 2013

Posted by in Asperger's syndrome, Autism, Disability, faith, high functioning autism, Miracles

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Because of our weakness, we sometimes feel that we are not strong enough, that we cannot do the work that God has called us to do.

I felt that I was not strong enough to raise two children with autism, and their sister with learning disabilities. I said rather frankly to God that I was pretty sure that I was not the right person for this job… My inner conversations with God at this time were of a similar ilk. Why do they have to have autism? I don’t know what to do, help me.

I felt weak, exhausted – sometimes too weak to even pray. Even unworthy to pray because I was weak. I felt helpless.

But helplessness is the key to prayer according to O. Hallesby, in his classic book, Prayer. He says “helplessness is unquestionably the first and surest indication of a praying heart…your helplessness is your best prayer. It calls from your heart to the heart of God with greater effect than all your uttered pleas.”

In our crying out to God, even if it does not feel like prayer, it is. So many times when I didn’t know what to do, my only prayer was, God help me. I didn’t know what kind of help I needed. I didn’t know what to pray in the face of tantrums; odd and uneven language development; persistent stimming behavior; barriers to education, mainstreaming, and inclusion; financial difficulties; health problems, etc.

But God has an answer for our weakness in prayer, even when we don’t have what we feel are the right words, or any words, for that matter.

“26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. 27 And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.” (Romans 8:26-27)

Those desperate, on-the-fly pleas were really prayers, sometimes spoken out loud, and sometimes silently. Then in my spirit, I waited.

Somehow, an answer would come to me in the form of a person or an idea . Not immediately most of the time.

Will couldn’t participate in organized sports. He didn’t understand running around the bases, or waiting in line to bat the ball. He couldn’t coordinate his hand to hit the basketball at the top of the bounce. A friend or a teacher told me about program at the local rehabilitation hospital for kids, which included group games and one-on-one swimming lessons. Someone else told us about therapeutic horse riding.

Will flicked light switches on and off at our house for years. On day I wondered if piano lessons would help him. Pressing a piano key is similar to flicking a light switch; flicking a light switch results in light, pressing a piano key results in sound. Shortly after that, one friend wanted to know if I would like a free piano. Another friend agreed to try to give Will piano lessons – just to see how it would go.

The challenges of this life can often leave us gasping. But God can gives strength to the weary.

Isaiah 40:28-31

Do you not know?
Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
29 He gives strength to the weary
and increases the power of the weak.
30 Even youths grow tired and weary,
and young men stumble and fall;
31 but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

God’s strength is the answer to our weakness. His love is the balm to our souls.