Category Archives: parenting

PPT meeting prayer for parents

With PPT season underway, I thought I’d share this updated post 🌷😊

Love Support Educate Advocate Accept

May my child’s love of learning grow.
May his teachers always know –
How to reach him,
How to teach him,
the way he learns best.

May I get a good night’s rest,
give me strength to do my best,
stay calm and strong –

To help him along,
to future education, employment and independent living…

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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

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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.

Hunting Goodwill 

Well here I am finally… but how did I get here? I’m writing on my phone now because my little guy stole my seat as usual. He then proceeded to spin around on my computer chair, and naturally didn’t notice the cords. He was tangled! He stood up and crash there goes my laptop. The battery pops out and the cord has become disconnected, I pick it up knowing my dear old windows laptop may just have seen better days, but the screen isn’t cracked thankfully. So I set it to the side for investigation at a more convenient time (if I can find one.) When I finally got around to checking it out, I found the screen was blank and dark – no picture 😕

Now I should tell you what brings me “Hunting Goodwill” otherwise I might just get lost in a tangent or distracted by something decidedly more important.

So I’ve done a lot of thinking and God forbid I pick up a pen and go back to the stone age, my finger is cramping just thinking about it.

For those of you who know me, you know my life is complicated and never uneventful, but sometimes we all need to stop and catch our breath. I’m a special needs mom after all. It’s a high stakes game, very stressful, but the victory is enormous.

Today I’m thinking about the struggle, the fears and failures, the desperation. Dare I say the hopelessness – but I’ll never go down without giving the devil his due. I’m not giving up. That’s what I’m talking about “Hunting Goodwill.”

Yeah I’m struggling, I’m always struggling, but that’s what life ‘s about. Another year has passed and I look at my accomplishments, and it’s never enough. So I dust myself off and try again, try again.

I’ve been thinking about talking another run at potty training my 8-year-old, non-verbal, deafblind, autistic, Angel.  (Labels are just labels after all.) He’s my son, and I’d never give up on him. He’s truly an amazing person with innate potential.

We all have our own unique strengths and weaknesses after all. I’m not going to get hung up on negative emotions. I’ve spent two days researching the best approach and the real $ cost involved and I’ve come up with a number, which of course I don’t have. Have I mentioned having a special needs kid is expensive? I feel guilty for saying that but it’s true. There’s some shame in knowing that I’m failing to provide financially. I take one look at my son, and I realize I do have success.

I have faith that some people spend their entire lives in pursuit of. Spirituality I’m grounded like the tree that’s planted by the water. I have a gift in that it comes easy to me like the piano to Beethoven. I’m always “Hunting Goodwill” like “Good Will Hunting” I struggle with fear and fear of failure, fear of loss. I know I have something far more valuable than material wealth.

Who knew training pants could run around $30 – $50 each for an 8-year-old? Size 3T is what $10-$15 for 5 or 6 pairs. How many do we actually need anyway? Well, the experts on cloth diapers agree on 10 or more as a minimal amount. Potty training experts estimate 12-18 pairs depending upon how often you can and will do the laundry.

Do you have some goodwill to share? Every little bit counts. It all adds up. I’ll update you shortly on the details but for now I’m going to get back to my movie. I need to blow off some steam because before you know it the engine will be running full speed ahead…

Parenthood

I’m a huge fan of the show…

It’s been soooo long since I’ve written on this blog that I’m not sure anyone will notice…

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It’s been too long, WAY TOO LONG…

Parenthood is a demanding job, my hubby fell asleep with our 8-year-old in the middle of our queen size bed. He weighs 60 something pounds now, so maneuvering him out of my bed without waking him is something of a feat. I pull him by his feet to the bottom of my bed. Then carefully lift him over both forearms, bending my knees as I lift so not to break my back. (As if I could really carry a 60-something pound boy like a baby, in my arms, from one room to another.) Then I put his feet down on my bed and flop him over my shoulder while he and I both pretended he’s still sleeping. Then I stumble over the beanbag in the middle of the living room floor and barely make it to drop him on his bed with just a little bounce. I tuck him in and give him a kiss on the forehead.

 

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So much has happened since I last wrote that I don’t even know where to begin. So I’ll start with my latest muse.
I was watching the last two episodes of Parenthood on DVR. I know my hubby will be mad that I watched them without him, so I’ll do my best to keep a poker face, and pretend I haven’t already seen them. I really won’t mind watching them again – 2 totally heart-warming, touching episodes. And the spoiler at the end is just breaking my heart. Why do they have to do that with the spoilers. If my hubby was awake he would have insisted that we didn’t watch the “next week on…”

As I watch the show, I’m reminded of just how valuable time is, especially time with those we love. Never take for granted the moments that make up a happy life. Moments of joy and sorrow, fear and hope, love and loss.

The holidays have come and gone with all the typical hustle and bustle of the season. Barely a moment to stop and catch my breath. I sit down to write and I’m pulled away and distracted with daily responsibilities. It’s easy to think of time to relax as a luxury, one I often feel lacking. I sometimes forget, as many busy parents do, that time to unwind is an actual necessity in life.

Always the farmer’s daughter, I find myself ever aware of the cycles of life and constantly in awe of the beauty therein. So I take just a moment to reflect and draw inspiration from the change of seasons. The cold, wet winter days remind me of the challenges that are behind us and of those that lie ahead. Winter is a time of rebirth. A time of quiet, peace, patience, and perseverance – waiting for the spring thaw, for the seed to sprout.

I’ve been so busy since I wrote last. I’ve worked a full-time job special needs parenting, a second full-time job as a volunteer education and legal advocate, and a part-time job self-employed in property management (imagine that a job I might actually get paid for 😉 ) Struggling to make ends meet and to fulfill ALL of my responsibilities to the best of my ability.

I’m happy to report our recent success in educational advocacy. Stephen started at his new school 6 weeks ago. He is now in a “language learning environment” where he will learn to communicate, improve his listening skills, and make the most of his own unique strengths and abilities. He seems happy and appropriately challenged at his new school.

I’m sure other special needs parents out there will want to know the specifics of how we got to this point, but in the typical legal mumbo jumbo fashion there is a non-disclosure agreement with the city. Suffice it to say that knowledge is the key that opens many doors. My best advice to parents is know your rights, know your child’s rights, consider your options, tread carefully, and just put one foot in front of the other and carry on, never give up! A long journey begins with the first step! Take it one day at a time, one step at a time, and persistence pays off.

The first few weeks Stephen was downright giddy with excitement about school. He’s slightly less enthusiastic about returning to school after the holidays, a pleasant indicator that he is aware it’s back to work and back to the grindstone we go. I’m at ease knowing that he is communicating in his unique way that he’s being asked to work hard and learn new things at school.

I’m reminded of seasons past, first with the Birth to Three program – physical therapy, aquatic therapy, feeding therapy, and occupational therapy. Each time he progressed through seasons of dormancy and seasons of growth. The seasons of rest being the times he looked forward to his therapies, and the seasons of growth being the times he would drag his feet just knowing that he’d be asked to do some hard work, and the harvest season – a time of success, accomplishment, and fulfillment. Seasons that inspire and challenge us with anticipation of what lies ahead. regression, disappointment, and frustration mere stumbling blocks turned into stepping-stones.

So it’s off to school he goes, and I’m a little uneasy starting again, anew. I miss the old familiarity of professionals we came to know and love like extended family (aunts and uncles, cousins and family friends.) I’m wondering how they are and what new things this season brings… I’m missing the text messages, and the ease of communication with someone you know and trust, the friendly smiles, and familiar nods. I know one day we’ll be there again – with short sentences, and unspoken words…

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Vacation

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We’re having a good time on vacation. Stephen lost his front tooth. I think he ate it. I noticed blood on his pillow and when I asked him he wouldn’t open his mouth. It seemed like he was crunching on something. He swallowed and then slowly opened his mouth. Missing tooth – nowhere we could find it. I guess he didn’t want the tooth fairy to get it 😉

A Small Thing My Dad Never Knew (R)

Butterfly Mind

I was unloading the dishwasher the other day, and my wedding ring clinked against a glass bowl, making a sound so similar to a sound from childhood that I was transported instantly to a motorboat, zipping through briney rivers, the sun on my face and the wind in my hair. I even caught a whiff of salt air.

I grew up on a tidal creek off the coast of Georgia (on a small “hammock” island just before you get to Tybee Island), and we spent every weekend during the summers out on the boat. My mom was in charge of the beach bag, chairs, towels, snack foods, lunches, and packing the cooler, and my dad was in charge of everything relating to the boat and the dock – fuel, mechanicals, boat and dock maintenance, crab traps, lines, first aid/life jackets, and driving the boat. My brother and I would cast…

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Judging Without Being Aware

I’ve been so busy dealing with school and addressing Stephen’s educational needs – I didn’t get a chance to write or post anything last week. Dealing with school is one situation where I feel as though everything I say or do is judged without the administrators who are making the decisions knowing the facts.

I’m a little bummed out to have so little time with family this summer. Summer is the time of year I look forward to. This year we will be cooped up in our little apartment for 6 weeks – just so that Stephen can attend day camp for 3 hours a day 4 days a week. I’m not sure that attending the day camp (provided by the school district as a reparation for services that were not provided) is in Stephen’s best interest.

We’ve decided to give it a chance, and alter our plans as we see fit along the way. What about potty training? We specifically asked for the school to continue with potty training while he’s there. The district ignored our requests on summer school and potty training. Is 3 hours a day at a summer program more valuable than the independence he will gain by being fully potty trained at age 7? I’m wondering how much of the 3 hours a day Stephen will actually participate, and how much of the time he will just be waiting for mom and dad to come get him…

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

When is it ok for parents of special needs children to ever have a bad moment? Somehow all is documented in your mind, as well as, in other people’s minds. There’s no way that being angry where dishes are shattered, doors are slammed and a long drive away from it all are approved and seen as a way of release and not a permanent way of life. Sobbing uncontrollably. Living in isolation. Dressing in clothes of woefulness. Breathing the air of no hope. Sad songs on instant replay. Your mind becomes a nomad, wandering from confusion to disbelief to what? to why? to how? and never resting long enough to land at one spot. And to add weight to your worry, there’s the sting of onlookers. The ones who portray a life of perfection and make it their mission to be that constant reminder that your life is not perfect. Not only do they frown at…

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