Lessons in Learning

First and foremost, I wish to apologize for not having written a new post in nearly 4 months.

 With the start of school last year came a whirlwind of activity.  There was much time spent advocating for an interpreter for Shea, as well as staying with her at school until one was found.  The main problem was that there were no certified interpreters in our area.  This is mainly due, of course, to the fact that this area pays them so little that even local individuals who attend the interpreter program at a local university that they tend to move to other areas affording them larger salaries.  After giving news interviews (Yes, sweet Shea is officially a TV star! http://www.dothanfirst.com/story/shortage-of-interpreters-creates-classroom-barrier/d/story/Hw2XlvI5m0KxDyooeSecBA) and talking via phone and e-mail with anyone and everyone who would listen, we finally got Shea's interpreter.  It actually came about because a a lady in the norther part of the state saw Shea on the news and contacted a friend of hers who is Deaf and told her that she would be able to be Shea's interpreter because she has years of experience as an educator for the Deaf and, obviously, is fluent in ASL.  This was a huge blessing to us because, as it turned out, we already knew this wonderful lady from attending Deaf Family Christian Fellowship!  As a matter of fact, she had even been to our house before!  She had been unaware that she would be able to be Shea's interpreter.  Overjoyed by this news, we met with Shea's new interpreter, giving her the ins and outs of what the students do in class and giving her a list of all the classmates and teachers so that she could familiarize herself with them. And so, for the last couple weeks of school, Shea had an interpreter whom she knew and was comfortable with.  All seemed to be going well.
As generally happens, school ended and summer overtook us.  We traveled to VA to see Shea's Aunt, NY to see her grandparents and great-grandparents and then, yes, we made it to Sesame Place! And now a new school year is upon us again.  She will have the same teacher as last year.  She loves her, so we are thankful for this.  We did, however, receive a text message from our dear friend who was interpreting for her and she informed me that she would not be Shea's interpreter for this school year.  It seems that another interpreter who was under contract already had her student transfer to the Alabama School for the Deaf so the school board was obligated to use her first because she was under contract.  This came as quite a shock to me because we had not yet been notified of this change, and school was about to start in a matter of weeks.  Upon receiving this news, I immediately contacted the Special Ed Coordinator for our county school system.  She explained the situation to me and assured me that they would still use our previous interpreter should this new one be absent for any reason.  OK, that's great, but my daughter is 3 and I'd like for her to be comfortable with this new person, so I asked the Spec. Ed. Coordinator to please give our new interpreter my contact info so that we could set up a meeting with her, both for Shea to become familiar and comfortable with her as well as for her to get to know Shea and see how she signs and understand some of her quirks.
Yesterday was that meeting.  We went to the Open House at the school and saw Shea's teacher, as well as her new interpreter.  She seems quite nice and Shea got along quite well while we were there.  We also met some of her new classmates.  It turns out that, because of having to fill the full time schedule of this new interpreter, Shea had to have her class days switched.
So, in the end we got what we needed - an interpreter for our daughter.  Is everything exactly as we had hoped?  Not by a long shot!  Will we ever get everything we want for our daughter's education?  Certainly not in the public school system.  For now, we have done our best to provide her with what she needs, but in order for her to receive what we believe to be the absolute best education, we will have to make some huge changes in the near future.  What does it mean?  Well, stay tuned as our family embarks on the road less traveled....

Advocating for Your Child

And so it begins.  Shea has aged out of Early Intervention and will be starting pre-school.  Federal mandate requires that the school system provide any child with whatever they need to get an equal education as the rest of the children.  In our case, that means an interpreter.  She starts school tomorrow - we don't have an interpreter yet!

After our 3-year check-up this morning, I have been on the phone for the past 3 hours, literally!  This is a copy of what has been e-mailed to Governor Robert Bentley of Alabama and the entire State Board of Ed as well as the US Dept. of Ed:

"My name is Beth Mitchell. I have called and am now e-mailing you as the President of the Board of Education. My daughter is 3. She has aged out of Early Intervention and will be starting pre-school tomorrow. She needs an interpreter. Because of the new rules you have made, they can not hire someone who is not certified, even though we know her and she interprets for our daughter at church. She is an interpreting student and she takes her test in June. You will, however, allow them to hire an aide. She doe not need help feeding herself, she needs an interpreter! I'd love to hear your reasoning for this. And thank you for making my job as the parent of a child with special needs that much harder!

Please be aware that I will not stop until my daughter has what she needs. I have an appointment next Monday with an Advocate from the Alabama Disabilities Advocacy Program. It is my great hope that you will be able to help resolve this issue before then.

Thank you for your time and attention to this matter."

If you have to advocate for your child - DO IT!  DON'T STOP!!  You'll become a much stronger and more confident person in the process.

If it helps you, take my words and use them to write your own letters to get whatever your child needs.  And if I can help in any way, contact me!  My e-mail is signingwithshea@gmail.com and I will always answer.  If I don't know how to help you, I will point you in the direction of someone who can!

My daughter is not broken

Ever since we found out that Shea is Deaf, we have been dealing with professionals, experts, friends and family alike who have the opinion that Deafness is a disease that needs to be cured.  Everyone from grandparents to Doctors inquired about our intentions of getting Shea a Cochlear Implant (CI).  Naturally.  Something between Shea's ears and brain was broken, so let's fix it....right?  We couldn't agree LESS, actually.  Our beautiful daughter is happy, healthy and can communicate her wants and needs to us very clearly using ASL.  We see no reason to put her through the major surgery that would be required for a CI.  We researched, discussed, worried, obsessed, and came to the decision that we would not make that choice for her.  She wasn't even 1 yet when people were telling us we should find out if she was a candidate and have her head cut open so that she might be able to hear.  That's right, there is no guarantee that it would be successful.  And even if it is successful, Shea would still never hear the same way "normal hearing" people hear.  No, I'm sorry, I will not subject my child to that trauma just so that she might be able to hear the nonsense that people spew on a daily basis, or so that she might be able to speak.  Would I love to hear my daughter verbally say "Mommy, I love you"??...Of course I would!  Will I sacrifice her happiness and peace of mind to do it??  Absolutely not!  It is not more important for her to speak than it is for her to read and write English properly.  Hearing is not a prerequisite to that.
What many people forget to consider is the child's sense of identity.  Many CI recipients suffer from a poor self image.  Not only because of the implant itself being noticeable, but because they are not really hearing, and at the same time they are not really Deaf.  Our daughter is a very self-confident little girl who loves to play, run, be the center of attention, and dance...yes, she loves to dance!  We're not going to risk her sense of self worth so that we don't have to bother learning ASL.
Now it should be noted that we are fully aware that, no matter what choice we made, there will be individuals who disagree with us....strongly.  That's fine.  You have a right to your opinion, and you have a right to do what's best for your family.  We have chosen to do what we feel is best for our family.  We are learning ASL together, as a family.  We are sharing our new found knowledge with anyone who is willing to learn.  We have immersed ourselves in the Deaf Community and have come to know many new friends in doing so.
At the same time, once Shea is old enough to fully understand what is involved with the surgery and aftercare of getting a CI, if she wants to do it, we will support her 100%.  Our main goal is to raise a happy, healthy, confident and productive member of society.....whatever it takes.
In the meantime, we will continue our education in ASL, try to find the best schools for her, take her everywhere we go, immerse her in Deaf Culture, teach her to read & write English, give her new experiences, take her to new places and love her as she is.....beautiful, perfect, happy, loving and self-confident.

Learn a new sign today with Signing with Shea on Facebook.

Communication is more than key

As parents, we want to do what's best for our children.  Sometimes that means making a decision that we think is best.....and then just hoping that it is.  As parents of a deaf child, there are so many more decisions that you just don't otherwise think about.  One of those is at the forefront of our world right now - school.  Yes, we always want to send our kids to the best school possible, but for us that means deciding between Deaf school or "mainstream" school.  And we have heard SO many opinions on this.  From deaf people who went to public school, from deaf people who went to Deaf school, and from concerned family and friends.  The bottom line is that we have to do what we feel is best for our daughter.  Right now that means finding a way to move to NY so that she can attend Rochester School for the Deaf.  Their program is incredible!
But the most important thing is that we continue to learn ASL so that we can communicate with our daughter as she gets older.  So that we can ask her for her opinion on where she would rather go to school.  So that she always knows that she can come to us with anything that she may want to discuss and that we will take the time to see what she has to say and to understand her.  I never want my daughter to feel out of place at holiday gatherings or family functions.  I know we have so much to learn, and sometimes it seems daunting, but when I look back at how far we've come....together, as a family, I am so proud and I know we can do it, no matter what it takes.  I mean, 3 years ago we had almost zero knowledge of ASL, and now, we attend Deaf Church, have many Deaf friends, and can carry on conversations with them and with our daughter.  Are we slow? Yes!  Do they make accommodations for us and slow themselves down for us, even spelling when needed?  Yes!  But we're doing it!  We're learning and growing every day, and I wouldn't trade this crazy life for all the riches in the world.  And we are so grateful to the Deaf Community for welcoming us with open arms.  Thank you!
Now, go learn a new sign today at Signing with Shea on Facebook!

Ups and Downs

I know that life, in general, is filled with tragedies and triumphs, but sometimes it just feels like I can barely enjoy one success before my bubble gets burst. This past Sunday we took Shea to Deaf Family Christian Fellowship, which is a local group that meets once a month to share the word of God via ASL.  And there are also many family members of the Deaf, as well as ASL students and interpreters in attendance as well, so someone voices service for those of us who are 'sign-impaired'.  We go to expose Shea to as many positive Deaf role models as possible. And it's a great help to us in learning more sign.  We had a GREAT day!  Shea made the rounds and sat with three different people during bible study.  She was such the little show-off.....she totally knows when she is the center of attention, and she loves every minute of it!
And then....Monday came.  And with Monday came "testing" by our speech therapist.  Testing that was requested by the preschool, which she will be attending beginning in April.  Testing that is NOT designed for Deaf children who use ASL.  I have several issues with this testing.  First, all of the testing objects were new to Shea.  They consist of toys that a required action is to be performed with, such as "the bear is hungry, can you give the bear something to eat?", and books where particular objects or scenes are to be pointed out.  Shea is not even 3 years old yet.  What do you think she wants to do when she sees a new toy or book?  Right!  Play with it!  Her focus was not on what our speech therapist was trying to get her to do, but rather on what these cool new toys and books were all about!  It was so frustrating for me.  And for Shea, who became quite irritable when she was not allowed to simply play however she liked.  Another part of the test consists of asking the child to point to a picture on the page of a particular body part.  Well, in ASL if you want to say 'eye', you point to your eye, so that whole part of the test is thrown out....even though Shea can spell 'E Y E' and 'N O S E' in ASL as well.
I just cannot begin to express my disappointment with the whole testing process for children who are not "normal".  I'll say it again......normal is anything in the main stream or the commonplace, therefore, genius is not normal!  Don't get me wrong, I'm not saying that Shea is a genius, but I am one of those annoying parents who thinks my child is incredibly amazing!  She teaches me so much every day - I can only hope that one day we can make a difference in areas like this for children whose abilities need to be showcased in a different way than the boring old "normal".
Please visit Signing with Shea on Facebook and learn a new sign today!

Wrap your brain around this....

As a hearing person, my brain works a certain way when it comes to language.  I hear a word and my brain automatically understands the meaning of that word.  The same applies to English, Spanish, Italian, or whatever language is spoken.  But American Sign Language....now that's completely different.  When we think of ASL, we want to immediately translate the signs into English words.  ASL doesn't work like that.  American Sign Language is a language all it's own, with totally different rules for grammar and syntax than any other spoken language.  While ASL does use an English Manual Alphabet (handshapes for the ABC's) to spell many words which do not have their own signs, that's about as far as "sign-for-word" translation goes.  On top of being a language of hand movements, ASL relies heavily on facial expressions as well. The same sign can have 2 different meanings depending on the facial expression and movement. For example, to sign that you understand something you put your closed hand near your temple and raise your index finger while nodding your head 'yes'. To sign that you do NOT understand something, you make the same exact hand movement while shaking your head 'no'.  ASL is used more to convey an idea or story than actual 'words'.  THAT is the hard part about learning ASL for hearing individuals.  We have to change the way we think about language.  We have to wrap our brain around the idea of language as being more similar to a game of charades.  Nearly every day I have to force myself to think of an alternate message of something I want to say to Shea.  I'll have an English thought in my head and have no idea how to communicate that thought to her in ASL, so I make myself think of whatever it is I want to say in an entirely different way until I figure out how to get my message across.  And it works!  Once you train your brain to think differently about language, ASL becomes much easier to understand.
One of the wonderful things that we have recently come to learn is that ASL is becoming widely accepted as a foreign language option, not only in colleges and universities, but in high schools across the country as well. We recently went to Chick-Fil-A at our local mall for supper one evening and the lovely young girl behind the counter absolutely lit-up when she saw us signing with Shea.  When we got to the counter she asked us if she was deaf and we said that she is.  This young lady was so excited she could barely contain her fingers!  She is home-schooled and had chosen ASL as her foreign language block.  Yay for homeschooling with ASL!  She was an excellent signer and I think she enjoyed conversing with us in ASL as much as Shea enjoys meeting new people to sign with.
And, of course, my favorite word comes out of all this: Sign-impaired.  Deaf people are not hearing-impaired, hearing people are merely sign-impaired.
Come learn a new sign with us today: Signing with Shea on Facebook

A Mother's Soothing Words

Last week Shea had an ENT appointment.  This  is not out of the ordinary for us.  She goes every 6 months to have the excess wax removed from her ears so that her hearing aids can help her as much as possible.  Apparently she follows in her daddy's footsteps in this area because, he too, has a wax issue.  :)
The only thing different this time was the fact that her right ear, which is her "good" ear, appeared to have fluid.  My poor baby cried and cried when the Dr. cleaned the wax out of that ear.  He had her tested and, sure enough, the test showed fluid behind that eardrum.  This may be the result of the cold she had all last week, or it could become a chronic problem.  He gave us some nasal spray and an rx to help and we will be back to see him in a month.  This was such a traumatic event for Shea that she fell asleep in my lap while waiting for the doctor after the pressure test.  She NEVER falls asleep on my lap, much less an hour before nap time!  It always hurts me when she is so upset because I know that, unlike hearing children, I cannot calm her simply with my voice.  Of course, I do talk to her, with the hopes that feeling the vibrations as I speak will somehow comfort her.  And I sign to her that everything is OK, or that the doctor is all done, or what have you.  But the ache in my heart remains because I know she cannot her me when I tell her that Mommy won't let anything happen to her.  One day I know she will understand all this more, but for now all I can do is hold her tight.