Taking the Scenic Route

Savoring the Journey

Zane’s Story

Zane, our oldest, is Autistic.  He was diagnosed at 4 years old, in December of 2006.   The doctor went back and forth between Classic Autism (based on how he interacted every time we were in the office) and PDD-NOS (based on some of the videos of his interactions at home).  She finally settled on PDD-NOS because she felt he was just shy on one of the points for classic autism.  (existed, but not quite severe enough).  Some days I think he should have a classic diagnosis, some days, I think it was right on.  If I feel a need to change the diagnosis later, I will go back.  I don’t really care right now.

As a family, we align ourselves more with the Autism Acceptance movement rather than the Curbie movement.  We believe it is genetic and a difference, not a disease.  My main frustrations come from how people treat him (and us) because of the differences.

Although we do agree that the current vaccine schedule needs to be severely modified (far too many, way too soon), we don’t think it is the cause of autism.  I do concede that it can cause damage to the immune system that can mimic genetic autism. (and that is why we are strong advocates for delayed vaccines.  Unless a child is at a direct risk for a particular disease, I think you should wait until the blood-brain barrier is closed at around 2-3 years old before you assault the immune system like that.  I am more concerned with SIDs resulting from early vaccine damage than symptoms of autism)

I can understand why parents who experienced regression after vaccines are striving to cure it, but that was not our experience.  Zane simply followed a different developmental path, and he is who he was meant to be, who God created him to be.

Because of his unique learning style, we have chosen to homeschool him and maintain the private therapies we began before he had the diagnosis.  We did put him in the school system for kindergarten, but after a rather disastrous four weeks (where I volunteered as his full time para due to a massive screw up in getting his IEP instated) I realized that he would not be best served in the school district.

His language is years behind (fairly low verbal), we are still struggling with potty learning, but he tested out as having a very high IQ (high 90s on the Weschler, a test that usually tests genius level autistic kids in the 60s and 70s due to it’s high reliance on verbal ability) and he is doing math and reading at a far advanced level.  In spring 2008 (kindergarten year), he tested at a high 2nd grade level and early 3rd grade level for phonetic awareness, word attack and rapid naming, but at a low kindergarten level for reading comprehension, confirming our suspicions of him being hyperlexic.  Because of this, our main focus this coming year (2008-2009 school year) will be on bringing up his comprehension by using the Visualizing and Verbalizing program by Nanci Bell.

The other programs we like are Floortime (Engaging Autism) by Greenspan, Relationship Development Intervention (RDI), and some behavioral approaches for a few things.  (ABA is not our main tool, but it can be useful in some situations if used in moderation, and with respect for his view on life).  We do not believe in stopping stims (self-stimulation) if they are non-harmful, but we have worked to modify and redirect anything that will cause harm to himself, others, or property.  (just like you would with any child).

Besides communication, his biggest challenges are sensory issue.  He seeks out deep pressure and is avoident of light pressure.  Occupational therapy has greatly improved his ability to cope with the world around him and be happier inside his skin.  He thinks better when he is able to move and wiggle, which was a major challenge in the school system.

His mouth is hyposensitive, which makes his speech somewhat apraxic (doesn’t articulate clearly on a consistent basis) and means he has major food sensitivities, especially to texture.  He loves hot sauce, crunchy or spicy things, sour (like sour candies), and won’t touch a single vegetable and very few mushy foods. 

In the near future we plan to continue his speech therapy at Heartspring and Wichita State Univerisity’s Speech Language and Hearing Clinic.  We hope to resume his Occupational Therapy, and are looking for Hippotherapy and Music Therapy programs for him.

  • Zane's age

  • Zane is 22 years, 1 month, and 26 days old
  • Zora's age

  • Zora is 18 years, 1 month, and 30 days old
  • Random Quote

  • It is only natural that we and our children find many things hard to talk about. But anything human is mentionable and anything mentionable can be manageable. The mentioning can be difficult, and the managing too, but both can be done if we’re surrounded by love and trust — Fred Rogers

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