Monday, June 30, 2008

Deaf Village...

There is a great new website called Deaf Village. It brings together folks of all 'walks of life' as it concerns the Deaf and hard of hearing. I am one of the blogger links on there so I thought I would write just a bit about ourselves and how I may end up contributing.

Our hearing history:
My son is almost eight years old. We found out he was deaf through newborn screening. The doofusses (how is that not in spell check?) did the test and said it 'might be water in the ears.' The pediatrician said "check it again in two months because he may grow into his hearing." Dorks! So on Halloween of 2000 we found out Andrew was indeed Deaf..profoundly. We immersed ourselves in activities of all kinds....we learned about oral, ASL, Deaf community, cochlear implants. (etc...) We went from Deaf events (churches, scrapbooking weekends) to cochlear implant seminars. I HIGHLY recommend EVERY parent, Deaf or hearing, to attend every sort of event they can in the first year of their child's life to determine the course that they might want their child to have. There is only ONE wrong answer...the one you let someone else make for you.

We decided to proceed with a cochlear implant at 13 months old. We chose Advanced Bionics. We started with Auditory Verbal Therapy. Again- personal choices, based on MUCH prayer, work and involvement in Andrew's first year of life. There are oodles of posts on all this stuff elsewhere on the WWW.

the "other."
As Andrew developed we knew there was 'something else.' Prior to the implant we did a CT scan so we knew Andrew had malformed semi-circular canals which would delay his physical development. But there was again...more than that. Two AVTs said there was 'something else.' One had no idea what to do and the other suggested an Occupational Therapist. But you see, the first OT we saw in the schools said 'it's just the malformation of the semi-circular canals. There is no need for other therapy." Note: Never listen to just one person...and don't be stubborn in your thinking. There is a verse in the Bible that says, "Test everything. Hold on to the good." 1 Thessalonians 5:21 In the Bible that is referring to prophesy primarily but I think it holds here too. When people ask how we have made decisions, the primary answer is prayer. We KNEW there was something else from day one. It took awhile for that knowing to take root in action when it came to the 'other' issues.

We were in a FABULOUS oral preschool. There were a few hard fought IEPs even before this class but once we got here we thought it would be great. The problem was, the teacher was an HI teacher with HI kids...and Andrew had 'other.' After many evaluations we did a MET and he was labeled as having autism. His developmental pediatrician says he is 'autisticish' in that he dances around it but never quite enters it formally. Regardless, he has sensory, attention, and social issues way beyond the scope of an HI room.

We looked around for an appropriate program for Andrew. I have always had homeschooling on my heart, even before Andrew was born. But we did want to keep our options open. As we looked toward Kindergarten our options were 1) HI room, 2) Autism room or 3) Mainstream. Andrew is "pretty smart." Let's just say that when I went in and saw there accelerated reading program I almost laughed out loud. In the autism room I saw kids lying on the kids licking toys (and escaping while I was left in the room with the other kids.) In the mainstream room they were 'included.' I witnessed the teacher say, "Go tell Billy Happy Birthday." Billy was the autistic student. Does that sound like inclusion? So...we homeschool. (Yes I know all my rights, I know I could fight for the prefect situation...but homeschool is what we feel is the best option for him right now.)

Our inclusion for homeschooling is hit and miss. Some folks bend over backwards to include. Some folks..well...not so much. Because autism manifests itself in behaviors, some folks see it as 'bad parenting.' And the cochlear implant has been incredible. Andrew reads above grade level. He can communicate in incredible ways with people one on one. I recently had my neighbor say, "you are doing great with him." This was after a conversation directly between Andrew and her. This is incredible for a kid born deaf and also with 'other.' Still Andrew's behaviors prove challenging. We went to Nana's funeral service today and Andrew didn't want to listen to the 'pretty music.' Is that the autism? the way the implant transmits music? or just plain stubbornness? No idea....

Academics is challenging in that I try and formulate our day to best fit his needs. We do the Charlotte Mason approach with an eclectic mix. I am in the process of formulating our fall curriculum but no matter what the materials, it will consist of short, high interest lessons. We will add in low interest lessons as a way of improving attention but those lessons will be VERY short. For autism we informally do RDI so I prefer to call it Mediated Learning or Guided Participation. We do not do ABA because we don't believe that has a long term lasting effect for most children with autism. There is controversy everywhere;)

So what will be my contribution on Deaf Village? Well, did you know that ONE OUT OF SIXTY Deaf kids is autistic????? That is well above the one out of one-hundred or so in the general population. And many people- deaf, autistic and combo end up homeschooling. So it is a uniquie niche that I fill. I have two other blogs. Settings of Silver focuses on our household; we do allergen free and are trying to organize our house to maximize attention and sensory input. I also have Our Art and Music Blog. I put, well, our art and music stuff on there that we do for homeschooling. Charlotte Mason is heavy on those subject areas and it is a great way to work on listening as well. I think that may be of interest to some folks here. It will probably be updated more frequently once the school year gets rolling. so....that's us....thanks for stopping by. leave a comment...or just enjoy. Oh- my OLD blog is Growing Fruit ONE. I moved here for a variety of reasons but you can check the archives for various hearing and homeschooling activities we have done!


elizabeth said...

Thanks for your support! Welcome to the neighborhood!

The Glasers said...

One piece you may be able to help people to understand is the concepts of Vygotsky who actually studied the deaf in his research. Did you get to the chapter in Awakening Children's Minds that addresses diffabilities? I thought of Andrew when I read it!

Prince Andrew and the Queen Mum said...

tammy- will have to drag that darn book out again!!! i have a post in the back of my mind on how RDI, AVT and CM all roll together...and fit so nicely.

Kris! said...

What a beautiful article about your homeschool journey, especially from a perspective after a struggle. It gives those that are struggling fortitude to follow Christ through to the other side of difficulty.

Prince Andrew and the Queen Mum said...

Thanks for your comments Kris. I think sometimes I write things in the blog so I can look back and SEE how far God has brought us.

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