Saturday, November 27, 2010

My Attempt at Cramming the Importance of What's "Between the Ears" into a Nutshell

Somebody recently formed a 'Deaf Community' group online BabyCenter.com and started a thread with something along the lines of "How did you become deaf?" This is my response on November 26 after reading several responses, knowing there may be new parents out there who have recently found out their child is deaf or hard of hearing.

Oh wow, there's a variety of experiences here regarding deafness, themselves or their kid(s). There's no one correct way to go about it, going for hearing aids or cochlear implants, or nothing. One of my favorite quotes goes like this: "It's not the ears that are important, it's what's BETWEEN them that counts." !!!

It is very important that your child has language from the beginning! Whether it is sign language or spoken English, pick which one is the most convenient to the deaf or hard of hearing child, not what is easier for the people around him/her. This may be hard to take but it will pay off in the long run. Research has shown that if a child starts out in ASL, with ASL proficient parent(s)... even those with satisfactory skills, he/she will succeed in picking up the 2nd language, English, for example.

I totally recommend taking your little kids to a Parent-Infant Program or Infant Toddler Program in your county or state, or even a Deaf school. The Parent Infant Program at my new son's school has a variety of deaf kids with other disabilities including Down's Syndrome and Cerebal Palsy... and kids who are simply Deaf. If you're not able to access these, at least your child needs to have friends just like him/her and if he/she can meet any Deaf or HH role models that would be incredible!

I was born with severe to profound deafness, unknown reasons. I even had my blood sent in to check for Connexin 26, a known gene that causes deafness and nada. I fall in the 20%-30% of those of us with unknown reasons. Took speech therapy in public school, all the deaf/hh teachers signed, I had interpreters in my mainstream classes and at home Mom was on top of me with saying words correctly BUT she always signed to talk with me. I transferred to the Washington School for the Deaf at 12 years old and it was a profound positive experience for me- everyone signed, period. From the cafeteria staff to the superintendent. I fell head over heels for sports and REAL teamwork. Hard to put it all in a nutshell. There's a good side to everything.

My husband is Deaf, my oldest son (6) is Deaf and fluent in ASL and is in a Deaf school (not residential); my daughter (4 1/2) is hearing and not yet old enough to start kindergarten; my newest son is deaf and blind. He was diagnosed prenatally with bilateral anophthalmia-no eyes (now recently corrected the diagnosis to bilateral microphthalmia- little eyes). He is totally blind and at the best he just might have some light perception in one eye. We are hurrying to get him hearing aids and he'll have them in by the time he's 5 months old (he's 4 months now). We read that deaf-blind children are sorely delayed simply by the severe absence of environmental input. We also are considering cochlear implants for him. We learned that CI's will help deaf-blind children develop language, yet ironically not spoken language (based on a study on only 7 deaf-blind children with CI at one site... I agree when they said there is a need for a multiple-site study). I'm curious about the same study on deaf-blind with hearing aids, but so far I know of none.

A Deaf and hearing child is normal to us in our family- it's just a difference in their ability to interact with the world around them. It's our 'normal'. Now with our baby who is also blind, that's where I find things... new experiences may be parallel with parents who can hear who happen to have a deaf child/children. It's a different and new experience, and that's a 'new normal' for all of us. Another thing we all have in common is that we love our little ones to bits! <3

Ms. Holligan- I'm so sorry if I just wrote a book on your thread!!! If any of you want to get in touch to talk about deafness, blindness or deaf-blindness, etc. feel free to message me.

Skyler and Anastasia hangs out with 9-week old Orion on September 20th.

Monday, November 22, 2010

The Second Opinion: The Ocularist

Today, 4-month old Orion and I met Orion's new ocularist in Bethesda. It was a huge relief to meet him and get confirmation on my mommy instinct: Orion will benefit immediately from shells inserted in his eye orbits (a.k.a. eye sockets). Over the phone last week he stated that babies can have the shells put in at even weeks old. During today's visit, he observed that Orion's upper eyelids were turning in, the lower eyelids were overlapping the upper eyelids. I noticed that but I realized I was not alert to what was happening. The clear shells will encourage Orion's sockets to grow in proportion as the rest of his face grows. The first year of life is the year babies grow at an amazing rate. In fact, Orion has grown 5 inches in his first 4 months of life! I cannot help but wonder what the other professional, a plastics ophthalmologist, was doing telling us that implants will be painful to Orion and that we do nothing but follow up with him in 6 months. He said nothing about shells either. Although I appreciate him telling us he cared about Orion as if he were his own... unfortunately something was missing from the whole picture. I can't imagine missing 6 more whole months of opportunities to work with Orion's eyes! With the ocularist, everything seemed to be on the right track- he was pleasant, humorous and took the time to type on the computer screen whatever he was saying.

The ocularist opened Orion's eyelids and looked inside while Orion objected to having his sleep interrupted. Serves Orion right to do the same to Mommy during Mommy's sleep time! ;) Clear shells will be made for him and his office will call us when it is ready so we can come in and have Orion try them out. I am looking forward to it!

[2nd Edit: Check out this mom's photo blog of her son's trip to the ocularist. In it, you'll see photos of the shell I'm talking about. It goes around the front of his little eyeballs, unlike the traditional 'glass eyes' many of us know about and those only go in if there are no eyeballs present. By the way, I love and echo what she calls her 'New Normal'. :::H]

Top: Orion enjoys the electronic drum pads thumping out its own rhythm.
Bottom photos: Big brother Skyler's first pair of glasses! White-haired Withrows share a moment.


Monday, November 15, 2010

Simon Says

Today, the Withrow family, minus Skyler who was in school, went to a doctor's appointment for Orion. During the visit, our noisy 'Tasia said, "Let's play 'Simon Says'!" The doctor stopped and said his name was Simon. His worn-out name tag said so, too, and he joked that he thought 'Tasia was teasing him.

Tasia proceeded to quietly play 'Simon Says' with me and didn't try to fool me once.

:::H

'Tasia rocks it out at Chuck E. Cheese's at a friend's birthday party last month.
video

Thursday, November 11, 2010

Believe

Thank you, to those of you who have shared with me your appreciation of my blog. I have to tell you, there are so many more inspiring moms out there of our unique children. Not only parents of children with bilateral microphthalmia or anophthalmia that I've seen share their experiences in a closed Yahoo group, but also parents of children who have their own different challenges. Yes, it is true our children are our teachers and we are their #1 fans cheering them on. I know one of the many best things you can do for your child is to believe in your child even when he/she goes through a rough patch. I watched a Dr. Phil episode about deaf-blind triplet girls and their parents and near the end of the show there was a blind lady who traveled as an inspirational speaker and has published a book (that I ought to get). When she lost her vision as a teenager, she said the key was her parents because they believed in her before she did. That really hit me. A lot of us are doing that anyway but I never stopped until then to reflect on that for my own kids. I'm a kid of my parents. They're my grandparents' kids. No doubt about it they believed in me and maybe it helped I also have a stubborn streak (my mom will be glad to confirm) that gave me the drive to accomplish things. We have a delicious cycle that shall be continued- we believe in you!

Hope it wasn't too cheesy. If you are sipping on wine, then perfect.