Vision and Hearing
Perspectives
Trying to See Clearlyby Colleen M. Proctor
A child with complex medical needs?
I've got one of those. His name is Zachary and he just turned three.
He suffered non-accidental trauma when he was only one month old and
spend almost a month at UCSF before discharging home to foster care. A
year later, I learned about him, and after a few get-to-know-you visits,
he came to live at my house and was subsequently adopted. When he came to our home, he was 17 months old and very stiff. He could hardly move his arms and legs, couldn't roll over or hold his own bottle, and could not eat solid foods. He had a diagnosis of Quadriparetic Cerebral Palsy, Strabismus, Cortical Vision Impairment, Dysphagia and the ever-present "Developmental Delay."
(Read More)
Lessons from Eric
by Meghan Clement
Today my husband and I celebrated our eighth wedding anniversary. Over dinner tonight, we were discussing how far we have come in the past eight years. It is almost kind of funny to look back on how we were when we got married. For starters, I was only 19 and he was 21. We were young and naive, and we really didn't have a care in the world. Nothing really mattered to us except that we loved each other. We were reflecting back on the "early years," when we took great vacations and had great parties!
Oh, we had so many laughs thinking back on all that fun we had, but we both agreed that we are in a much better place now. I guess what I am trying to say is that I believe that Eric Thomas was sent to us for many reasons. Eric helped us grow up and learn to be more patient and understanding. He has taught us compassion and the true meaning of love. My husband and I have learned to love each other so much more through our love for Eric Thomas. We have learned how to listen to each other and support each other during difficult times. We have learned to live each day to it's fullest because we know that we don't know what the future might hold. We appreciate one another more. We don't judge others and we always do what we can to help someone else.
by Meghan Clement
Today my husband and I celebrated our eighth wedding anniversary. Over dinner tonight, we were discussing how far we have come in the past eight years. It is almost kind of funny to look back on how we were when we got married. For starters, I was only 19 and he was 21. We were young and naive, and we really didn't have a care in the world. Nothing really mattered to us except that we loved each other. We were reflecting back on the "early years," when we took great vacations and had great parties!
Oh, we had so many laughs thinking back on all that fun we had, but we both agreed that we are in a much better place now. I guess what I am trying to say is that I believe that Eric Thomas was sent to us for many reasons. Eric helped us grow up and learn to be more patient and understanding. He has taught us compassion and the true meaning of love. My husband and I have learned to love each other so much more through our love for Eric Thomas. We have learned how to listen to each other and support each other during difficult times. We have learned to live each day to it's fullest because we know that we don't know what the future might hold. We appreciate one another more. We don't judge others and we always do what we can to help someone else.
Focus: Vision and Hearing
If Only He Could Talk! Communication
Strategies for Children with Visual Impairments
I
find myself thinking this all too often. My son, Ivan, is both totally
blind and also cognitively impaired. He is the light of my life and a
handful at the same time. I'm sure you can relate!
Ivan can't talk, and of course this is
a huge barrier for him. If he's crying or upset, he can't tell me why. If he needs something, he can't tell me what it is. Even when he
suddenly lights up and laughs, he can't tell me what's so funny.
But I also recognize that "language" is an awfully amorphous goal. What is language exactly? Is it the ability to use words or the ability to understand and communicate? What are the important aspects of communication and are there other ways to obtain them besides actually speaking words?
Understanding What It Means to Have a Child Who Has Combined Hearing and Visual Impairments
by Michelle Doty
When my daughter Campbell turned three, she was no longer covered under our state's early intervention system. We had a great team of therapists and a wonderful case manager who guided us in making preparations for her transition into preschool. It was still a very anxious time having to change therapists and programs that we had been involved with since Campbell was six months old. Campbell was born with multiple genetic anomalies including cleft lip/palate and microcephaly. She also has hypotonia of unknown etiology, cortical vision impairment, epilepsy and mild to moderate hearing loss. The actual "cause" is unknown and she falls within the undiagnosed syndrome category.
Campbell received vision therapy before age three, but was never really diagnosed with any hearing loss at that time. We were aware that she had slow processing with both her vision and hearing. When one of her therapists suggested our state's deaf-blind project as a possible resource for Campbell, I was somewhat shocked. Deaf and blind? These were not terms that I would use to describe Campbell at that time. Sure, she had significant visual impairment but she had made tremendous progress with therapy. She did need time to process auditory input and was not always consistent with her responses. But deaf AND blind?
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Bone Conduction Hearing Aids: An Option for Children with Conductive Hearing Loss
by Janis C.
Austin was born with a rare genetic syndrome that manifested in Bilateral Microtia and Aural Atresia. In layman's terms, this means he does not have outer ears or ear canals. During his newborn hearing screening he both passed and failed the test, twice. Now most people might think, why even test him? He has no ears, so of course he can't hear.
I'm here to tell you that that line of reasoning simply isn't true. I knew it was possible for him to hear before they even tested him, but of course there was also the chance that he would be deaf. What most people don't realize is that there is more than one way to hear.
What surprised me most is the lack of knowledge that most doctors had on the subject. Within 24 hours I had more than one doctor say things like his missing ears are just "cosmetic," and he can get a cochlear implant and be good as new. While I'm on the subject, I'd like to take a moment to dispel another common misconception. Not all people who are deaf or hearing impaired are candidates for a cochlear implant. While Austin does not have ears, he does, however, have perfectly functioning cochlea. Therefore, he did not need a cochlear implant. What he needed was a Bone Conduction Hearing Aid.
(Read More)by Janis C.
Austin was born with a rare genetic syndrome that manifested in Bilateral Microtia and Aural Atresia. In layman's terms, this means he does not have outer ears or ear canals. During his newborn hearing screening he both passed and failed the test, twice. Now most people might think, why even test him? He has no ears, so of course he can't hear.
I'm here to tell you that that line of reasoning simply isn't true. I knew it was possible for him to hear before they even tested him, but of course there was also the chance that he would be deaf. What most people don't realize is that there is more than one way to hear.
What surprised me most is the lack of knowledge that most doctors had on the subject. Within 24 hours I had more than one doctor say things like his missing ears are just "cosmetic," and he can get a cochlear implant and be good as new. While I'm on the subject, I'd like to take a moment to dispel another common misconception. Not all people who are deaf or hearing impaired are candidates for a cochlear implant. While Austin does not have ears, he does, however, have perfectly functioning cochlea. Therefore, he did not need a cochlear implant. What he needed was a Bone Conduction Hearing Aid.
Specialty Article
I did a simple search for the terms "cerebral palsy" and "dysautonomia," a term used to describe poor function of the Autonomic Nervous System, and came up with only six results. Five were published before 1990, and three of those were from the 1960s and 1970s. A search for "cerebral palsy" and the more general term "autonomic" still only yielded 36 articles in English, and only eight of these actually discussed autonomic symptoms. There were more results when searching for encephalopathy, but virtually none were relevant to static encephalopathy, cerebral palsy, or brain malformations. Most focused on infectious encephalopathies. A survey of medical textbooks on cerebral palsy and encephalopathy yielded little more than a few paragraphs on reflux, constipation, bladder issues, and temperature regulation problems.
Feature Article
The average child costs around $15,000 a year to raise in the United States. You can expect to almost double this number if you have a child with complex medical needs and typical insurance coverage. How can families survive and prevent bankruptcy or foreclosure when dealing with such high costs?
While financial ruin due to your child's medical condition is not always preventable, it can be minimized with proper planning. This article will provide some general tips to decrease current expenses and prepare for future expenses.