This is the second part of a two part series answering questions about raising a child with autism.
1. How has having an autistic child changed your life? What have you missed?
- Marriage. Our whole life revolves around him, his schedule, his behaviors. Many marriages don’t make it when there is a special needs child; typically they disagree on parenting styles.
- Raising another child, trying to give Jamie the attention she has craved, having an uninterrupted conversation!
- Silly talk. Scripting is a common characteristic of autistic children. They repeat language (or if they are non-verbal, actions) from movies, TV and books. They interrupt everything. (I mean it, everything). It’s like a ringing in the ears; it never stops. At five, it is endearing. At twenty, it is annoying. We are thankful that he does talk; so many autistics are non-verbal.
- Work. I left a successful corporate career to focus on Luke—his therapies, doctors, medications, etc. Bob has turned down several opportunities in his insurance career to spend more time at home. Not having a “normal” son. Bob would have loved to coach a baseball team, take him fishing, camping. He missed out on these things and many more.
- Social life. Getting “alone time” for our marriage. Finding and keeping sitters can be challenging. Even at 20 years old, we rarely leave him home alone. It is still difficult to bring him to our friends’ homes.
2. What strategies and therapies have you tried that have worked?
That is enough for a whole column or two! Stay tuned, and please give me feedback on those that have worked for your child and your family. Here is an abridged answer, to be more fully explained in future blogs, based on reader comments:
Good ones (for us):
Behavioral Token System
Early intervention programs
Individual and Group speech therapy
Auditory Integration Training (AIT)
Go to http://www.cawn-krantz.com/auditory-integration-training
Recreation Programs and James (yes, the same James that taught Kai Fukanaga to swim and ride a bike)
Medication (“Better Living Through Chemistry”)
Therapy for us: Respite!!!
Residency at Oconomowoc Developmental Training Center, WI, for 20 months, age 13-15
Ones that had no effect on Luke:
Chelation treatment, glutein-free/casein-free diet, supplements, Theraplay, Biofeedback, Hypnosis. I urge anyone with a special needs child to try anything you think might help your child, but be wary of promised results and costs.
3. What’s ahead for his future? Will he drive? Go to college? Live on his own? Hold a job?
We see Luke entering a group home within the next year or two, attending a special needs day program with a vocational component. We doubt that he will ever be gainfully employed. We are looking at some “college living experiences” for him, but few are nearby, and few would accept Luke due to his low academic skills. FYI, there are more than 240 of these programs nationally. He reads at a fourth grade level and does math at second grade level. He does understand time and money (rudimentary), which is a plus if he seeks employment. What he lacks in smarts, he makes up for in smiles!
4. Does Luke have “savant” qualities, as in the movie “Rain Man”?
Many people think that “Rain Man,” the movie, has done much to raise autism awareness in the last decade. Rain Man has also been seen as dispelling a number of other misconceptions about autism. The movie does not touch on the failure of many agencies to accommodate autistic people and make use of the abilities they do have, regardless of whether they have savant skills.
Luke has no savant skills or interests, as far as we can tell. He has an outstanding auditory memory and, quite possibly, a photographic memory. Reference Temple Grandin’s award-winning book, “Thinking in Pictures.” He has been learning piano for ten years, and can now read music and play reasonably well with two hands. We were blessed to find a wonderful teacher who has been so compassionate and patient. (See photo)
5. Why does Luke misbehave so often?
Truly, he can’t help it. Autistics generally have no “theory of mind,” i.e. apathy or sympathy for others. They want what they want NOW!! The world revolves around only them. For example, while reading a book upstairs, Luke will yell “Mom, what is this word?’ He does not realize that I can’t see it.
This is why he could never drive. In addition to his short attention span, he could never anticipate what another driver or pedestrian might do. And this is why he might hurt someone without considering the reaction. When Luke is with neurotypical (normal) peers, he does try to model their behaviors. That’s a good thing!
6. Does Luke know he is autistic? How did you explain it to him?
No. Luke believes he is like everybody else, but was confused when his peers went to college, and he didn’t. He did walk across the stage at HPHS graduation and received a standing ovation and hoots from the grads: LUUUUUUKE!! When we have the discussion, he screams, “I won’t listen!’ – a typical reaction to complicated subjects. I am not really sure how he feels about his place in society.