Today Erika shares her sons’ Growing up with Autism story. Erika is a very sweet lady that goes to great lengths to encourage those special needs moms who are coming behind her.
It’s funny, through the years when I’ve described our family to people, I always get looks of astonishment because we have 3 boys. Then I let them know we homeschool and that all 3 have special needs of varying degrees. Then I give them ‘the list.’ LOL!
Daniel, Zekariah, and Luke in their scout uniforms
Zekariah was on the late end of ‘normal’ for most developmental milestones, but his official diagnosis began in Jan 1995. At 2yrs3mos old, he had a Speech/Language evaluation at a great clinic in OC. The results were: expressive & receptive speech delays, and semantics & pragmatics delays. We knew there were other issues along with speech, so we sought other avenues through our insurance and saw a Developmental Disabilities Specialist when he was 3. Pervasive Developmental Disorder-Not Otherwise Specified(PDD-NOS) was added, and she referred us to a Pediatric Neurologist.
The Pediatric Neuro did exams and asked lots of questions; he suggested that Zek may be having ‘absence seizures’ and recommended Tegretol. He also did a CAT scan to make sure there were no brain lesions or other abnormalities. We also did the blood testing for Fragile X Syndrome, a genetic disorder that commonly includes autism. The CAT scan was normal and the Fragile X testing was negative, although there is a much more thorough test now, so I’d like to have it done again. The doctor diagnosed Zek with mod-severe autism, marked to severe hypotonia (low muscle tone which included fine & gross motor delays) & sensory integration disorder (SID). After some research I found out that hypotonia used to be called Benign Muscular Dystrophy. This was all around 3yrs old.
So, now Zek needed occupational, physical & sensory integration therapy along with speech/language therapy. Zek attended therapies thru the school district & some were contracted. When he was 6, he graduated out of all of them with less than 6 months delays. Zek has been re-evaluated at 6, 9 and 18yrs old. His final diagnoses are: moderate-high functioning autism, sensory processing disorder, dysgraphia (writing disorder), dyscalculia (math disorder), an average IQ and exceptional abilities in history.
At this final evaluation (Feb 2011), the doctor felt Zek had an average IQ although he learns like someone that is ‘intellectually disabled’. He also thought Zek may have a speech impairment because he had a hard time understanding Zek during part of the oral testing. We’re going to look into the speech issue, but I think it was more a case of lack of eye contact and mumbling while Zek was doing his testing. Zek does still have difficulty with the ‘L’ and “Th” sounds. Zek has processing issues which explains the slow learning. He’s not good at answering questions on the spot and needs time to process. Then he can come back and usually answer most questions right.
Luke and Daniel have their own learning issues as well. Luke has dyslexia, poor vision and is quite hyperactive (ADHD), although never officially diagnosed. Daniel has dyslexia, SID, general anxiety disorder (GAD), ADHD and probably Asperger’s syndrome (AS), although it was inconclusive at 4yrs old. Daniel is also a frustrated perfectionist which used to come out in behavioral issues. Now he’s learned other coping mechanisms. Luke and Daniel do not have official diagnoses, but they don’t mind me putting a label to their learning difficulties either. When we got the recent results back on Zek’s testing, Luke’s comment was, “Didn’t we already know these things?” I had to laugh at the insight of a 16 year old boy, who knows his brother well.
So, when people tell me, “I don’t know how you do it!” I usually respond, “I’m lucky enough to have their needs spread out and not all rolled into one, like many parents!”
Erika has been a consultant, advocate, writer and speaker for homeschooling special needs children, primarily the autistic spectrum. You can visit her website Journey of Learning Academy, at http://www.journeyoflearning.com or on Facebook at Erika Schron, Journey of Learning Academy or ASLearningAtHome.
This is the last post in the Growing up with Autism series. I hope you have enjoyed the stories as parents relate the progress their children have made. If you have missed any posts, you can find them here:
Daniela’s success with biomedical treatment
Heather’s lesson from Eric Carle
and the story that inspired the whole series
Many Hats Mommy 