love shows up – a circle 5 years in the making

A beautiful story – quick read, thoughtful and heartfelt ❤️ tears and smiles 😅

a diary of a mom

I wrote the following post in May of 2010 for a website called Hopeful Parents. Yesterday, I found it in my Draft folder. Sometimes, for all the miles we travel, we find ourselves right back where we started, the lessons once learned patiently waiting to say, “Yes, still.”

When I was thirteen, I broke my leg while doing gymnastics. My dad had brought me to practice that night, just as he always did, and was expected back at pick-up time three hours later, just as he always was. I broke my leg right in the middle of practice.

As soon as I felt the flat of my shin crack against the balance beam, I knew. This wasn’t a run-of-the-mill, put some ice on it and quit your belly achin’ injury. Something was really wrong.

As my coach lifted my head, our team trainer created a foam splint and…

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Always About The Child

Awesome post from a fellow blogger! These are the same feelings that influenced my earlier post (Autism and the Hurtful Misuse/Abuse of Labels) For parents it’s always about the child! Teachers and professionals please keep this ever-present in your mind!

Portia Dawson "My Son, His Voice, Our Journey"

AlwaysAboutTheChildPic

A month ago, my husband and I requested a school autism assessment to be done on our son, Callie. It’s been awhile, and since Callie is going to high school next year, we wanted to see where he is now, especially in the areas of Reading, Math and English. This is a new school, new district and new year — why not enter in high school with updated results? The diagnostician organizes, carries out and supervises the testing. He or she is the one who analyzes and evaluates the learning difficulty of a student and recommends ways to help and support that child. Although this being true, the definition and this district’s current diagnostician should not be in the same sentence. She is definitely not a favorite and I’m pretty sure I’m not her first pick for parent of the year. Callie’s transition into the district was nothing short of…

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AUTISM and the Hurtful Misuse/Abuse of LABELS

As Autism Awareness Month (April) draws to an end, the topic of labels become prominent in my mind.  I’ve had yet another horrible experience with audiologists. My son is congenitally Deafblind, a term I don’t always use because of people’s preconceived stereotypes about what Deafblind means.

Audiologists often fail to understand the diverse community of people they serve. The reason – nearly all accredited audiology courses in th US have no requirement to learn about Deaf culture, American Sign Language, or Deafblindness. Autism is a prevelant diagnosis today, audiologists are usually somewhat familiar with Autism. SOMEWHAT FAMILIAR is a relative term.

Parents should know audiologists are by no means qualified to make an autism diagnosis, nor to apply the label to a child with a complex medical history.

Parents should also be aware that use of the autism label in the audiological setting is ill-advised. The reason – audiologists often fail to recognize hearing loss, auditory processing disorders, auditory neuropathy, Deafness (as in respect to language acquisition), blindness – particularly cortical visual impairment (the fastest growing cause of blindness), Deafblindness, as well as the combined effect of multiple sensory impatient and/or multiple handicaps, when a child is labeled autistic.

Deaf-blindness is a low incidence disability and within this very small group of children there is great variability. Many children who are deaf-blind have some usable vision and/or hearing. The majority of children who are deaf-blind also have additional physical, medical and/or cognitive problems. Children are considered to be deaf-blind when the combination of their hearing and vision loss causes such severe communication and other developmental and educational needs that they require significant and unique adaptations in their educational programs.

Autism and Deafblindness are two different and unique conditions.

Why Deaf-Blindness and Autism Can Look So Much Alike

 For example Autism does not cause abnormal findings on a Brainstem Auditory Evoked Response (BAER or ABR.)

The ABR is used for newborn hearing screening, auditory threshold estimation, intraoperative monitoring, determining hearing loss type and degree, and auditory nerve and brainstem lesion detection.

Hearing loss alone (with no other medical, behavioral, or social issues) significantly impacts language acquisition. A child with a mild hearing loss can miss 25-50% of spoken language in the classroom.

What Is Language? What Is Speech? 

What are the effects of different types of hearing loss?

What is hearing ability?

The current DSM-V diagnostic criteria for autism requires specification of:

With or without accompanying intellectual impairment

With or without accompanying language impairment

Associated with a known medical or genetic condition or environmental factor

***

Images Courtesy of:

I am not Autism – dnagengaCC-BY-NC-SA 2.0 Generic

see past labels – Krissy Venosdale – CC BY-NC-ND 2.0

I don’t know.” – Krissy Venosdale – CC BY-NC-ND 2.0

Creative Commons License
Love Support Educate Advocate Accept by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Should I worry? It’s better to know.

It’s better to know. Does my son or daughter have autism? Is it possible that my son isn’t hearing everything I’m saying? Why doesn’t my baby look at me?

Fear of the unknown will keep us from reaching our true potential. When we know the facts we can make better decisions. The decisions we make will direct our path in years to come. These words apply to so many situations that we’re all faced with in life, but for parents knowing our children’s strengths and weaknesses will allow us to help them reach their full potential in life.

Developmental milestones in early infancy was one of my concerns. My son wasn’t reaching for or holding a rattle or exploring the small space within his reach. This was the only sign, such a small and seemingly insignificant sign, that something could be wrong. Sure he didn’t push himself up on his arms when I put him on his tummy. He didn’t want tummy time at all.

His older brother loved to sleep on his tummy as a small baby. At the time, it wasn’t recommended because medical professionals suspected a link between SIDS and infant sleeping positions. So we allowed him to get comfortable on his tummy while keeping a careful eye on him, and promptly turned him on his side as he drifted off to sleep.

But what does it all mean anyway? Should I worry? Well, the truth is maybe – maybe not.

Autism Awareness

As a parent, no words can instill fear like the words autism and special needs. I remember the first time I heard the words “developmentally disabled” used by my son’s pediatric neurologist to describe his future prognosis. I was crushed. If I could go back in time and know then what I know now, I’d see the future is uncertain for us all. I’d know that despite countless obstacles, I couldn’t be happier as a mother, and as an individual.


Image Sources:
48365 World Autism Awareness Day – CC BY-NC-SA 2.0
Autism Awareness – CC BY-NC-ND 2.0
Creative Commons License
Love, Support, Educate, Advocate, Accept… by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.