Category Archives: labels

He’s Left The Harbor

27 Thursday Dec 2018

Posted by in Asperger's syndrome, Autism, cancer, Independence, labels, Transition issues, Uncategorized, writing

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“There’s a rumor we may need to go to London around the first of the year,” said Will, via Facebook Messanger to me, Ralph, and Patty. He sent this to us from Atlanta while on a business trip in November.

Will has definitely left the harbor. He owns his own home in another city. He goes on several business trips a year. This year he has spent time in New York City, Los Angeles, Atlanta, and probably somewhere else I am forgetting.

I started this blog in 2011 at Will’s urging. That is, I started writing again. After he graduated from college. He encouraged me to go to a local writing group, and there I learned how to blog.

From 2011 to 2014, I posted once a week on average. After Ralph’s health emergency in 2014, the blog faltered. I lost focus. My entries were not solely grounded in transition issues for young adults on the spectrum transitioning to adulthood.

I wonder what direction I should go from here.

Should I consider closing it down? Our kids are in their late 20s to early 30s. Will and Marie have jobs and mortgages. Patty is struggling for direction, but lives with her brother. Patty has said to me directly that she doesn’t want me to identify them as having any struggles growing up. It is important for their careers that they not be identified as ever having been on the spectrum. I struggle with this, because it has been so much of my life, raising them, and helping them achieve what they have. But I can see her perspective. On the other hand, she has told me that I need to write the story of our family. If I don’t, she has said she will. She wants to see my journals. However, I don’t know if she could handle the rawness of those emotions. I stopped journaling when they learned to read well.

Should I gather up these blog entries and put them in a collection of essays and publish them under the pseudonym of this blog. What if that becomes successful? Will they be “outed?”

If nothing else, this blog has been cathartic for me. It has helped me understand and process some of the history of our family. Our struggles, emotions, etc. But I don’t know if I should just shut it down. Throw it away. Act as if it didn’t happen.

And then there is the question of whether I should keep writing, and further, what I should write about. So pray for me, my readers and fellow bloggers. I don’t know what direction I should go now. Write fiction, stories, reviews, poetry, etc. What would I write about. I have been busy the last few years just taking care of myself and Ralph, who has cancer. But things have settled down since the diagnosis and subsequent move to the condo with our oldest daughter, Marie. So this spring I have planned to go to a writers’ retreat at the urging of my psychiatrist. He said I need to take care of myself and get away. But I am at a crossroad. I hope nothing prevents me from going to the retreat. It is paid for. I am still a member of my writing group, even though I don’t meet with them in purpose.

Will is out of the harbor. Patty lives with him. We live with Marie in her condo. Maybe it’s time to close the door on this chapter. But I don’t know what direction I want to go next. I just know I want to keep writing.

What say you?

Tiger, Tiger – Apologies to William Blake

02 Monday Dec 2013

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

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Tiger, tiger in our tree. I see him looking out at me. Who knew, when kitten found that he….Would make his home a Christmas tree?

When first he shimmied up the tree…He was a kit, 2 oz, pound three,…Now 15 pounds, give or take…His climb doth cause the tree to quake.

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He is the smartest cat of all…and with his polydactyl claws..He knocks ornaments off with fury…Picking them up makes me weary.

Tiger coos with delight…As he climbs up past the lights…Then hubby cries out with a mighty shout…Tiger, from the tree get out!

Then Mr. Tiger takes a flight…Over all the Christmas lights…Like a sparrow, like a robin…He just makes those lights go wobblin’

Mr. Tiger, in our tree…Why did you climb up so high? Did you think you are a bird? Did you think that you could fly?

Tiger, tiger, in our tree…Again I see him look out at me…Who knew, when kitten found, that he…Would make his home a Christmas tree?

*****

This is a parody/take-off of a famous poem by William Blake, Tyger, Tyger. Some of you may have read this work in High School or college. I published this last year as well, but I am so taken with its silliness that I am reposting it.

Merry Christmas to all. Ann.

Milestones

07 Saturday Sep 2013

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

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Height is just one of the milestones by which we measure our children. We also closely measure our children’s growth via the milestones set out in pamphlets/posters at the doctor’s office, in magazines, child rearing books/websites, etc. We are happy, even proud, if our children meet or exceed the milestones;  worried if they don’t.

Most of us remember being measured for height at home. The marks lower on the door belong to Mary and Patty. Will’s marks were higher on the door. He was always tall for his age. Mary was in the 10th percentile for height and weight until she was 12, and then she shot up 12 inches in two years. Which goes to show that you can’t predict future growth by past growth.

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“Developmental milestones were described as occurring later than normal” – a statement from Mary’s psychological report, dated August 29, 1991; the first of many over her educational career

I was the one who described her milestones as later than normal. She walked at 15 months, used single words at 15 months, accomplished toilet training at three and a half years. (The actual time of toilet training was a year later, with some later accidents, but I was embarrassed at my failure to help her meet that milestone.)

As a result of this psychological evaluation and the speech evaluation, Mary was placed in a special education classroom. Mary was eventually diagnosed with PDD.NOS (Pervasive Developmental Disorder, Not Otherwise Specified), and her siblings were also given an autistic diagnosis.

Their placement in special education also came with many “homework” assignments from the speech therapists, occupational therapists, and social worker/psychologists. In addition to their regular schoolwork, we also had handouts showing exercises to strengthen their bodies, improve gross and fine motor skills, tongue exercises, speech pragmatics, etc. It felt like every minute of their at home time had to be devoted to the effort to help them reach the goals on their IEP reports (Individual Education Plan). The goal was to help them catch up with their peers.

Every IEP report, which was done yearly for our kids, contained goals:

  • Mary –  produce /p/ in initial position in words 60% of the time.
  • Will – reply to his teachers’ greetings 80% of the time by the end of the semester.
  • Mary – Tie her shoes independently 50% of the time. (This goal appeared on her IEP report four years in a row.)
  • Will –  refrain from answering all the questions in Algebra class and allow his classmates to answer within 4 weeks. (The situation had reached a crisis, so we needed an extra meeting to address it.)

Setting goals is necessary  in order to know when our kids are making progress. But sometimes they seemed arbitrary and forced to me. We had to do something, anything to make things better. Jess Connorton in her excellent article, Rethinking Functional Behavior and the Tyranny of Made Up Deadlines, speaks eloquently and thoughtfully about the pressure that parents feel. http://adiaryofamom.wordpress.com/2013/06/05/rethinking-functional-behavior-and-the-tyrrany-of-made-up-deadlines/

A half hour of Power Rangers was watched every day for several years at our house. Playing Power Rangers served a functional purpose, developing the ability to pretend.

Weight lifters and runners need to give their bodies a rest in order to achieve the best results. I think this is true of the mind as well. Work needs to be balanced with fun and vegging out time. This is true of typical children and adults. Why wouldn’t it be true of people with autism, cerebral palsy, or other conditions?

Results Not Typical

25 Sunday Aug 2013

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

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“In a great green room, tucked away in bed, is a little bunny. “Goodnight room, goodnight moon.” And to all the familiar things in the softly lit room—to the picture of the three little bears sitting in chairs, to the clocks and his socks, to the mittens and the kittens, to everything one by one—he says goodnight.”

http://www.amazon.com/Goodnight-Moon-Margaret-Wise-Brown/dp/0064430170

When Mary was two years old, we read this book to her every night for a while. I would walk around her bedroom with her, facing forward in my arms. We would say goodnight to the light switch, good night to the curtains, good night to her teddy bear, etc. And she would giggle. And then settle down. It was part of the ritual.

From babyhood, we read books to our children, cuddling them as they went to bed. We also read stories whenever they would bring us books to read. We are a reading family.

So when Mary was placed in special education at 5 years of age, with a 2.5 rated age for reading readiness, among the questions that I asked myself over and over was “Haven’t I read to her and with her since she was a baby?” It didn’t make sense to me.

At that time, I tried to follow guidebooks. Dr. Spock was my go-to reference book. If parenting could be done by the book, I was an expert. Earnestly, we raised our children. We cared for them, read to them, gave them delicious food, played with them, etc. We did what all caring parents do for their children. Maybe there should have been an asterisk on Dr. Spock’s book and all such books – “Results not Typical, for special needs children.”

When my children were all placed in special education in the space of a year (1991-1992 school year), all that we had done for them was thrown into doubt. Why, if I did everything by the book, were my children in special education? It all seemed upside down.

I didn’t throw my Dr. Spock Baby & Child Care book away, but I wanted to.  I kept it for disease identification from that time onward, having to do with measles, pinkeye, etc.  (There was no Internet back then.) I started reading different guidebooks.

However, we did continue reading to our children. We did continue the night time routines. They say many children with autism thrive on routine and structure. (Breaking the routines can and did result in meltdowns). For our family, the bedtime pattern (bath, story, song, prayer), remained a very precious time.

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What were/are your children’s favorite stories?

Tantrumming

30 Sunday Dec 2012

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

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I think the word “tantrum” is overused, especially when it is applied to individuals with autism. I am not saying that my children never threw tantrums; they did. Nevertheless, there is a world of difference between an angry, frustrated outburst when the answer is “no” on candy at the checkout; and the outburst which occurs after too many transitions in too little time.

A tantrum is an outburst of anger and frustration, typically associated with young children. In our culture, frequent tantrumming is usually blamed on the parents. Parents of children with autism know this all too well.

My mother (and my aunts, my siblings, many people at church, and many strangers at the grocery store, etc.) said, “If you would spank that child, he would straighten up/behave himself/fly right.” Ha! We know that didn’t work; we tried it. Will did not understand what a spanking meant. Many ordinary children do not understand it, either.

It is often said in our world (the world of parents of autistic children, teachers, therapists, physicians) that children with autism have “difficulty with transitioning.” This phrase appeared on Will’s IEPC reports for at least 10 years. In our world, we know that this is code for screaming, crying, throwing things, and possibly aggression.

This behavior is not “brattiness.” This behavior is not the result of poor parenting.

Behavior is communication, though. There are many reasons that children with autism have meltdowns, fits of crying, and shutdowns. Adults in our world struggle with the task of putting the puzzle together to help our children.

Will had difficulty transitioning to the next activity. Sometimes he really enjoyed what he was doing and didn’t want to stop. Most of the time it was because he had a hard time moving from one task to the next. He was helped by a “what’s next object.” When lunch was the next activity, his teacher handed him a picture of a lunch tray with pictures of food. (This can backfire when the lunch food doesn’t match the picture, though.) When circle time was next, his teacher gave him a book to hold.

Will was averse to touch and would cry when there was too much close contact in the lunch line, for example. We began “brushing” him to reduce his hypersensitivity.

Language delays, both receptive and expressive, often lead to distress. It was not easy for Will to tell us what was wrong. We needed to teach him phrases that he could use to communicate his needs to us. I often said to him when he was about to have a meltdown, “Will, use your words. Tell me what is bothering you.” Sometimes, we did use time-outs. I would say to him, “Will, go to your room to calm down. Then we will be able to speak.” His room was his refuge. In middle school, he had a refuge room as well.

Tantrumming often has the stain of judgment and shame attached to it, especially as our autistic children grow beyond the toddler stage.  People often wondered how I could remain calm in the face of meltdowns. They would say, “I can’t believe how patient you are with your children.” I think part of it comes from understanding our children; and part because I needed to conserve my energy.

I knew that my mother finally got it when in her weekly call from Florida she told me that she thought she had seen an autistic boy (whose parents were struggling with whether to have him evaluated). She said, “He screams the same way that Will does.”