Saturday, November 19, 2011


We've been so busy lately.  Scarlett is adjusting well to her 5 appointment-per-week schedule.  It's usually:
  • Occupational Therapy with Lynda on Monday
  • Physical Therapy with Cathy on Tuesday
  • Signing and communication with Kimberly on Wednesday
  • Clinic and labs at the hospital on Thursday
  • Signing toddler class on Friday
The hardest one to deal with has been the Friday toddler class.  It is about 30 miles away.  It wouldn't be so bad, except it starts at 9am, so we hit the world's worst traffic in Oakland, and need at least an hour to get there.   The class is then 2 hours long, and Scarlett generally falls asleep about 45 minutes in, since she's been up for a few hours and needs a nap. 

We like the school, the teacher, and the classroom.  Since the class is really for parents just as much as it is for kids (maybe more), we get a lot out of it and enjoy it.  It's just very far.

So, we have been exploring our options.  While Scarlett will not be attending school full time yet, language acquisition for children with hearing loss demands early intervention.  Ever since we first learned of her hearing loss in April, we have been fighting to get her back on track with hearing aids and professional interventions.  The school we currently visit was recommended by our audiologist and our local regional center for early intervention, who pays for the home teacher and the class.  However, it is not the only option we have in our area.  One of the wonderful advantages of living in the Bay Area (to balance the outrageous home prices, gas prices, traffic and crowds!)  is that we have access to a wide range of services for Scarlett.  However, that puts us in a position of having to choose, which has been a huge source of stress for us lately.

There are three schools in our vicinity that cover the wide spectrum of deaf and hard of hearing services.  All three are highly regarded and have wonderful track records for teaching children to communicate with hearing loss.  All three recognize the importance of early intervention and have classes for babies starting as early as 12 months.  Once Scarlett reaches 15-18 months (soon!) she will be eligible for much more, and we want to be prepared.

On one end is the California School for the Deaf, which is a public school that focuses on manual communication (using American Sign Language).  They teach ASL as well as written English, but spoken English is not used.  While English and ASL are related, they are in no way the same, and are not typically used simultaneously.  Essentially, all sign, no talking.  This school is literally down the street from us, less than 2 miles from our front door.  Because this school is so close, we are embedded in a community that is somewhat familiar with signing, ASL and regularly encounters deaf people.  I used to go to summer camp here as a child when we had a deaf neighbor.

The opposite end of the deaf communication spectrum is the Jean Weingarten Peninsula Oral School, which focuses on listening and speaking exclusively, with no manual communication - all talk, no sign.  It is about 20 miles away, which would take about 45 minutes (plus $5 bridge toll).  I don't know too much more about it yet.

In the middle of the spectrum are a variety of lesser-known philosophies, including the one we are currently learning.  The Center for Early Intervention on Deafness (CEID) uses a different sign language called Signed Exact English (SEE).  This means that, while they use many similar ASL signs, many are different, and there is a sign for every word and conjugation that is spoken in English, so that you can sign and talk simultaneously.  Our home teacher tells us that people who are fluent in ASL and those fluent in SEE struggle to communicate clearly because the two "dialects" are so different.

SEE is seemingly idea for Scarlett because she can hear, and will benefit from the reinforcement of both spoken and visual communication.  However, this is a small group and they only provide instruction through preschool.  Once Scarlett gets to kindergarten, she will either be at one of these special schools or in a regular school (possibly with the support of special education if necessary).  Either way, there won't be any support for SEE once she leaves CEID at 5 years old, so we will all have to relearn everything.  This seems pointless.

Of course, like everything else, there many shades of gray.  We can choose a school and do a separate technique at home.  We can change our minds and take her to different schools once we see more of how her hearing and neurological development affect her communication as she gets older.  But, no matter what we choose, we have to fully commit to it and make the best of it to truly know if it is working.  This makes it a big decision for us, and one that we are taking very seriously.  We have talked with Scarlett's audiologist about what we can expect as Scarlett gets older, as well as her oncologist about their experience with kids in this situation; both have basically said they don't know.  They expect Scarlett to be on the listening and speaking end of the spectrum.  They expect her to be able to be in a mainstream classroom, or at least a regular school.  But because Scarlett's brain is "hardwired" differently, there is no way to know what she will need.  We just have to wait.

And while we wait, we have to make a decision.  We are setting up an appointment to discuss our early intervention and toddler options with the local school.  We will then talk with the oral school to see what they say.  Our feeling right now is that we want her to have all available options for communication, which means that either a sign-only or oral-only approach will need to be supplemented at home.  This might mean we just bite the bullet and deal with the long commute to the current school.  We don't want to close off any options that might be right for her.


Kirstin Stenberg said...

Brandi -

My name is Kirstin, and we met at the blood drive (I won the raffle for the scarf and gloves!). I work in special education, and have another option to consider.

There is a center called Abilities United: it is located in Palo Alto, and they have an AMAZING infant class - I know, I used to work there! I also taught at the special ed/regular ed inclusion preschool also on site.

Definitely worth giving them a call and trying out the program. I strongly urge you to at least look at their website! Because the program is not specified for any particular developmental disability, but rather, adapted to fit a wide variety of needs, Scarlett can receive both hearing loss related instruction side by side with typical spoken language instruction, too.

Take a peek at their website abilities There are many many AMAZING people there, and I can't speak enough about how wonderful this place is.

Feel free to contact me with any specific questions, Id be more than happy to help!

Best of luck, my dear!

Carrie said...

I like the program just described kirstin, it sounds like a total communication option. I work in special education and our program ( located in the philadelphia area, so no where near you!) uses a total communication approach for our hearing impaired students. It is ASL, spoken language, lip reading, and learning to follow social cues and hand gestures. They rely heavily on hearing and speech therapists for their 3 to 5 age group. There is also a possibility that you could look for a speech group not focused on hearing impairments and then work with her at home on ASL.

zagirl2k said...

Sort of local SpEd teacher here. I don't know the specifics of any of these programs or Scarlett's case personally, but my gut feeling would be to go with the ASL program. It will be a lot easier for your to supplement the oral language component and likely receive additional support from other sources (Regional Center, school district, even Park and Rec classes) in the oral English portion of it than it will be to find another strong ASL program. Plus, think of all the extra time, money and hassle saved by not having to travel so far. That is time she could be spending exposed to and participating in language rather than sitting in her car seat. There is enough time that is unavoidable for being in the car. Just my 2 cents. Whatever you choose, good luck!

BalletAndWaves said...

You do have so many decisions to make. Try to take comfort in the fact that you will make a great decision (regardless of what you decide upon) because your basing your decision on what you think is best for Scarlett.

I wonder, if you were to go the ASL route, if she would be able to successfully pick up spoken English and ASL (even if they are not done simultaneously) in a manner similar to how children with bilingual parents can acquire both languages with little/no confusion. Just something to think about...