Saturday morning, Sofia awoke, inspired, "Mommy, I want to dress up as a ballerina, today." Me: "Sofia, it's about 115 degrees here today with 100% humidity, don't really think it's a great idea to wear a long-sleeved leotard, tights and dance skirt right about now...! Sofia: "AAAAAAAAAAAAAAhhhhhhhhhhhhhhh, I want to dress up like a pink ballerina, Mooooommy!" At that moment, a vision of Brooke in her Santa dress flashed before me and I said, "Sofia, do what you want." So, Sofia proceeded to dress herself in ballerina attire: she pulled up her pink leotard, asked me to tie her taffeta ballerina skirt, then remembered she needed her pink tights, so I had to undo the skirt, help her pull up her tights and retie the skirt. She then sprinted into her bedroom, ran back into my bedroom and screamed, "Ta-dah!" I said, "YOU are such a ballerina princess, but do you realize that your legwarmers are on your arms?"
She said, "Uh, yeeeeeeeeeah!" Me: Cool. Aren't you a bit hot? Her: No, Mommy, I'm beautiful! (God, help me.) Me: Sofia Madyson, wanna come with me to get a cappuccino? Her: Yes, Mommy. (five minutes pass) I CAN'T FIND MY BALLET SHOES!AAAAAAAAAAAAAH! (She emptied her entire wardrobe and it was sitting on the floor in a heap) Me: "Throw on your pink crocs, girlfriend and move your butt, I really need a cappuccino!" Sofia: Okay, I'm ready Mommy. Me: (Noting that she had decided to add a pink Barbie hat to the mix) Okay, let's go. Sofia: Mommy? Me: Yes? (I can just feel what's coming...) Sofia: I have to go to the bathroom.
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.
I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICUs, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychology.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it.
We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland " and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy . We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs.
We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
FYI: Rachel just sent me this... AG Bell Parent-Infant Financial Aid Program Applications Now Available! The Parent-Infant Financial Aid Program was established to provide financial aid support to families of infants who have been diagnosed with a moderate to profound hearing loss and who desire a spoken language outcome for their child. Grants are awarded to assist with expenses associated with auditory support services, speech-language therapy, tuition, hearing device purchases, etc. Click here to review the criteria and download an application.
Award Criteria
Applicants for this program should meet the following criteria: Hearing loss must have been diagnosed prior to acquiring spoken language (pre-lingual hearing loss). Hearing loss must be within the moderate to profound range. This means that the applicant must have an unaided Pure-Tone Average (PTA) of 55dB or more in the better hearing ear in the speech frequencies of 500, 1000 and 2000 Hz. Children with cochlear implants meet this eligibility requirement. Spoken communication must be the child’s primary mode of communication. Formula for calculating the PTA: On the unaided audiogram, look at the results for the better hearing ear at 500, 1000 and 2000 Hz and add those three numbers together, then divide that total by three. The result is the Pure Tone Average. The child must be three (3) years of age or younger as of December 31, 2008. (If your child is older than three years of age, please look at the Pre-School Financial Aid award and the School-Age Financial Aid award on this site.) Applicant must be a resident of the United States (including territories) or Canada. Parents/guardians must demonstrate financial need. NOTE: Children with unilateral [one-sided] hearing loss do not qualify.
Submission Requirements
Please use the following checklist to ensure that your application meets all requirements and includes all materials: All pages of the application and supporting materials should be submitted on 8½” x 11” sheets of paper. All pages should be single-sided. No part of the application should contain a staple. The application should be submitted flat (NOT folded) in a 9”x12” envelope, held together with one paper clip, and in the following order: Application, with pages in numbered order. Every page of the application must be completed and the application must be signed. For children who use hearing aids, an unaided Audiogram performed within the last twelve (12) months OR, for those with cochlear implants, the first page of the most recent MAPping or CI report. Recommendation from a hearing health or therapeutic professional (maximum of two pages, single-sided). Recommendation from a current AG Bell member (maximum of two pages, single-sided). If you do not know an AG Bell member, please provide a recommendation from a member of your child’s educational/therapeutic team. Recommendation from a non-relative who is familiar with the family’s financial need (maximum of two pages, single-sided). Please DO remove letters of recommendation and transcripts from the envelopes in which you receive them, unfold them, and attach them to your application.
Please do NOT include any additional information, such as photos or tax returns; all such items will not be considered and will be destroyed.
Applicants are encouraged to keep a photocopy of their application; applications will not be returned under any circumstances.
Enrollment Period
AG Bell will be accepting applications for the Parent-Infant Financial Aid program beginning August 29, 2008.
Telephone requests for applications are not accepted. The application may be downloaded on this site (above), or you may request an application in writing via email to: financialaid@agbell.org or via fax to: 202-337-8314.
Only those individuals who do not have access to the internet (your local public library or your therapeutic or educational provider can provide easy and free access) or a fax machine should request an application in writing via the US postal service. Requests should be mailed to: Parent-Infant Application Request, AG Bell, 3417 Volta Place, NW, Washington, DC 20007.
Telephone inquiries about the status of an application or award are not accepted. Regular updates about the timing of various notifications will be posted to this site.
Deadline
The deadline for applications is October 16, 2008. All materials MUST arrive together in one package at AG Bell by 5 p.m. Eastern Time on October 16, 2008.
Application package should be mailed to:
Parent-Infant 2008 Financial Aid Program AG Bell 3417 Volta Place, NW Washington, DC 20007
Please Note:
AG Bell does not accept responsibility for delays or delivery errors on the part of delivery services; applicants are encouraged to submit applications well in advance of the deadline.
FAXed applications will not be accepted under any circumstances.
Late and incomplete applications will not be considered under any circumstances.
Applications will not be returned for any reason.
We have a strict policy for no exceptions; please do not contact AG Bell seeking an exception.
Memorable time spent in Dublin with Giovanni and the ladies. A city that promises fun times, colorful street performers and expensive as hell cappuccinos (I pay 1 euro 10 cents in Grosseto - I paid 3 euros there), Dublin is the perfect place for a crazy weekend with friends or that significant other. Here's a little taste of my fifteen days...
The Bunnies and the Leprechaun
Chillin' in Belfast
My girls with Ray the hot French Guide! (Hi Ray!!)
Dublin: St. Stephen's Green (Where's Rachel when you need her?)
Hanging out with Oscar Wilde
The Guinness Factory *smile*
Thinking of my blog...
My best friend Max and the group
St. Patrick's Cathedral by rain
Six plates of Curly Fries - the only edible material in 15 days
John-poker chump and Luke - Social Planning Director
I always rant and rave about the amazing support offered by the incredible (and hot and sexy) parents on the Pediatric Cochlear Implant Circle. In fact some of the current threads are... Freedom BTE and FM System Amazing Video of one brother with a CI reading to his other brother with a CI (I will be posting that one, btw) Bilateral Surgery a Success Gentamicin and Hearing Loss (very interesting - lot of info offered) Hearing with noisy background Static on Plastic Slides CI Awareness Cochlea Necklaces (I have this one!) ETC.
Oftentimes, moms post topics such as "Bragging Rights," or "Had to Share," because when we finally see our children succeed, we know just the parents to come to to share our exciting news with...those who are just beginning - so that we can inspire them...and those who have accompanied us along the journey, so that they can be happy for us.
You know, while Jordan was growing up, I never "bragged" about him to other parents, actually I spent most of the time apologizing for his behavior issues. Yet, even while I was apologizing, I knew that he was so super-intelligent that his time would come.
Lately, this mom on the CI Circle has many inspirational stories to share about her son John. This is merely the latest in a looooong series that will only keep growing:
Today we learned that John has been selected as a National Merit Scholarship Semifinalist. That makes him one of 16,000 students selected out of the 1.5 million juniors who took the PSAT last October.
John was late diagnosed and didn't receive his first HA's until age 3.5, had the evaluated expressive and receptive language of a 12 month old at the age of 4, received his first implant at age 8 yrs 8 months (8 years ago, that's a lot of 8's!), suffered two failures and received his current (and best working!) implant in June 2007.
Yes, he's bright. More importantly, he's hard working. But look what he was able to do despite having to make up so many years!
I know, I mean I KNOW -
I don't just think or speculate, that his intelligence and work ethic would not have been enough to help him achieve this honor without the CI. Earliest intervention is always the best case scenario, but for all of you guys dealing with borderline candidacy, or auditory neuropathy, or progressive hearing loss that results in your child receiving an implant past those all important language development years, look what can happen!
Keep up the hard work and don't lose faith!
PS. When I requested permission to blog about her child's incredible achievement (btw, I was not a Merit Scholar, just in case there was any doubt *smile*)this proud mom added:
Feel free to point out that several "experts" told me that John would never talk (when he was just 3.5 yrs old), that he was more than likely autistic(another reason why he'd never talk - as if autistic children don't deserve services and/or hope), that he was more than likely mildly mentally retarded (their term, not mine), and that I was committing child abuse by teaching him to speak. When I politely disagreed with all of the above, they told me I was in "denial". I suppose I was. I was in denial of all their hogwash. From non-verbal to National Merit Scholarship Semi-finalist in 13 years - we'll take it.
Well, my dad just left. Goodbyes suck, and I am really bad at them. While my dad was saying his goodbye to Jordan, Jordan sobbed and through his tears managed to say, "Mmmmammmmma, why can't Nonno (grandpa) stay until Friday? Mmmmmammmmmmma, will you buy me the new military model airplane that's coming out tomorrow? Bbwwwwwwwaaaaaaaaaah, pppplease?" (Chump) And Sofia? She said, "Bye Nonno Steve, I love you. Mamma can I have some more lipgloss?" (as she twirled a Shirley Temple curl) Kids find a way to adapt. So do moms...but it isn't easy.
This was one of the latest quotes on the Pediatric Cochlear Implant Circle: When asked "What advice would you give younger children about being hearing impaired? Explain."
Icon of the Circle, "A's" answer..... "Don't let it pull you down or hold you back, just live your life to the max, don't be afraid of challenges and find people worth having as friends"
Description: Our son Drew was born in September 2006 with profound hearing loss in both ears, which means he is deaf. At 8 1/2 months of age, he became the youngest child in Ohio to receive simultaneous, bilateral cochlear implants. This blog is a record of our efforts to "turn on" Drew's ears and educate him with an auditory verbal philosophy.
Cutie Drew
...posted this newsworthy information:
Music For New Ears - Creating Music For Cochlear Implant Users Mike from Music For New Ears contacted me through Drew's Facebook page today to tell us about their amazing non-profit collaboration which aims to create music especially designed for cochlear implant users.
We all know how big of a deal music appreciation is to many CI users. Imagine a group of speech and language professionals collaborating with musicians to design music created just for those with CI's!
Please take a moment of your time to visit the Music For New Ears page on Ideablob.com and click on the green VOTE button on the right. If they get the most votes, they'll win a $10,000 grant to help develop this music.
Not decided whether you want to spend 2 minutes on this? Here is the description of their idea - in their own words.
Cochlear implants are surgically implanted electronic devices that provide a sense of sound to people with profound deafness. However, many aspects of sound, including pitch and timbre, are almost entirely lost in the process, making it difficult for cochlear implant users to enjoy music.
Music For New Ears is a non-profit collaboration between composers, hearing scientists, and cochlear implant users. We identify sounds that C.I. users can hear with the most clarity and use these sounds to compose new music. Our mission is to help cochlear implant users better enjoy music by creating music specifically for them and the unique way in which they hear. What will you do if you win $10,000 for this idea?
1) Pay our primary composer to create full-length music compositions for cochlear implant users.
2) Recruit C.I. users to provide us with valuable input during the composition process.
3) Arrange live performances for audiences of C.I. users in Boston, MA and surrounding areas.
4) Organize a national contest for composers unaffiliated with our organization to create their own pieces of music for C.I. users, with a grand prize of $1,000.
We have everything in place and we are eager to begin working. We simply need the funds to get started.
Sound good? Now go vote - I can't wait for them to get started!
Have a question for Mike? Email him directly at michaelpeterevans@gmail.com, or post your question as a comment so we can all see the response (Mike, let us know if this is ok).
I'm dealing with two kids, my Dad and a husband in heat, while trying to build an empire. I'm a little overwhelmed, especially because I haven't been blogging. Blogging helps me maintain my sanity, what's left of it.
If I've been in limbo the past year and a half, now, I'm at the starting gate ready to bust out to take on the first lap (obviously I'd be running the Preakness). Waiting and waiting and waiting...the projects are lining up but they need to be organized and defined. In any case, I need to talk about two doctors: my pediatrician and my Cochlear Implant Surgeon.
When Ferdi gave me the opportunity to create a project for his association, I began surfing the internet regarding Newborn Hearing Screening and found a study in PEDIATRICS: Primary Care Physicians' Knowledge, Attitudes, and Practices Related to Newborn Hearing Screening OI: 10.1542/peds.2006-1008 Pediatrics 2006;118;1357-1370 Mary Pat Moeller, Karl R. White and Lenore Shisler that has an excellent questionnaire which evaluates the level of current knowledge of the Health Professionals working with our Deaf kids...and those to come.
I showed this questionnaire to Ferdi who was very interested in the idea and gave me the go ahead to proceed. Then, I showed it to my pediatrician who was Very enthusiastic about the idea, and who acknowledged that the knowledge level of issues in Deafness among pediatricians is lacking.
When I showed the questionnaire to my ci surgeon, he informed me that he had just had a book of guidelines for Newborn Hearing Screening in the region of Tuscany approved and that based on regional legislation, the Tuscan region mandated that all birthing hospitals had to perform the screening as of Oct. 2007.
Back to the pediatrician... Dr. Giovanni Lenzi performed a sort of "preliminary investigation" as to exactly how many of the birthing hospitals regularly performed the Newborn Hearing Screening and found that some perform the entire screening process very well, some perform the screening process when "motivated," (puke),and some not at all.
Interesting. The results of this little investigation apparently pissed off some people. Niiiiiiiiiice. One hospital coincidentally got their "broken" screening device "fixed" and began the screening process five days later.
I went to speak to my Cochlear Implant Surgeon, Professor Stefano Berrettini a few days ago. Now that is one dedicated surgeon, who has single-handedly created the NHS program for the region of Tuscany and who by chance would like to add the component of Parental Support to the Early Hearing Detection and Intervention program that is in the initial phases of being actualized. He was also interested in the support of the Italian Federation of Pediatricians. Got that!
Do you know what he said to me? He told me that he appreciated my professionalism, motivation and determination. He would like me to be a part of his team. (You know he wanted to add that I'm a pain in the ass, but he is just way too nice:))
I think I might just be goin' back to college! Look out!
