Expert: Catherine Ridenour - 11/14/2007

Question
Hello Catherine
I have known my stepson since he was 2- although I am "just" his step mom I am his full time mother (he lives with us full time)  I feel like I am his only advocate and I am desperate for some answers.  He is 11 years old, he has had an IEP since 1st grade- he has had problems with speech receptive and expressive, adhd w/o hyperactivity and auditory processing problems.  He didn't begin walking until closer to 2 years old, he has alway had extreme mood swings- if something goes wrong in the morning- the entire day is shot!  He cannot read or spell phonetically at all- he doesn't even try.  His handwriting is horrible and he is always saying & writing very unusual things- Christmas is Crisemees then later on in a different paragraph it is spelled yet another way (totally strange) did is often bib, what is wait forever is for every. It is not uncommon to hear him say he is going on baseball (when we are leaving for baseball practice)  He will ask if people are speaking Spain (spanish)  He comes up with the most unusual things and I find myself constantly trying to help him say things the proper way- it doesn't work. He is very uncoordinated and overall very awkward looking in movements and walking.  He almost always has something in his mouth- a rubberband, piece of paper, paper clip anything - it is not unusual to find his playing with his own saliva and it looks like he has gum in his mouth.  I know this is stemming and have always thought it was odd.  He is always picked on/bullied.  It is so difficult for him to make friends- he truly gets along best with kids who are much younger than him.  He is immature in so many ways.  He also is very sensitive to the way clothing feels- last year he would have complete meltdowns in the morning because hie lo-cut socks bothered him- no kidding they didn't "feel right" so he would yell, scream throw things around in his room before school.  Needless to say I immediately threw the socks away and bought ankle socks to avoid the situation. He is overall a very sweet sensitive boy, a very loving protective brother to his two little sisters (1/2 sisters)  He is a wonderful boy and all I want to do is give him every opportunity for success.  Right now he is not getting what he needs at school in his IEP.  I need to know what to focus on at his IEP. Most people think hes a quirky kid and have just come to accept his uniqueness- My heart just breaks because I truly feel like there is something going on and the older he gets the more obvious things are becoming because he isn't outgrowing some of these traits.  Thank you for your help- anything would be wonderful.

Answer
Hi Holly,

If your step-son has not been diagnosed as autistic, they have missed the boat. Everything you describe is part of an autistic spectrum disorder.

His IEP should be focusing on speech therapy and auditory processing. He may have dyslexia as well from what you describe about his reading/spelling. (Auditory processing disorders are very hard to treat as it is truly a "crossed wiring" situation. He probably actually hears "for every" instead of forever.)

I would recommend that you search your area for a mental health nurse practitioner or doctor who has genuine experience with spectrum disorders and get a thorough evaluation. Schools just aren't cut out to do the job.

Even though he lacks the hyperactivity, if he's genuinely ADHD, he may benefit from medication for that disorder. It increases the ability to focus. Many autistic kids have an ADHD label but really are not. This should be sorted out in the evaluation.

As for his social problems, not only should he be receiving occupational therapy to learn social skills, the school should be taking a pro-active stance toward preventing the bullying. If he is being mistreated by classmates on the playground, the school is not providing adequate supervision and a safe learning environment for him. Make noise. Get a lawyer if necessary.

You are right that you are his advocate. Parenting a child on spectrum is a full-time job. You are right to love and accept him as he is and also right to keep pushing for an appropriate education.

Here are a few web links to help you learn more:

http://www.neurodiversity.com/main.html (many links to books, articles and resources)

http://www.patientcenters.com/autism/news/resources.html (books and resources)

http://www.ninds.nih.gov/disorders/asperger/asperger.htm (the definitions and
government links)

http://www.autism.org/temple/meds.html (about medication)

http://www.autism.org/ (many links to information)

http://www.angelfire.com/pa5/as/asteachersites.html (teaching resources)

http://www.rettdevil.org (a discussion board for parents and persons with neurological and developmental disorders)


Best wishes,
Catherine