Posts Tagged by my son

No Off Switch

 

my son is 6, he has Sensory Integration and Central Auditory Processing Disorder.

he’s hyper, hes active, he has no off button. I knew this when I as pregnant within. He never stopped moving.

He cannot walk anywhere, he has to run. He cannot sit still, ever.

He is clumsy and can fall off a chair just sitting there. he’ll be eating and sitting like “normal”  at the table and then BOOM hits the floor hard…the dis-regulation in his nervous system, requires he seek input constantly and he sings ALL THE TIME,  has to crash into things and people to stimulate his nervous system. he pounds the floor hard when he walks for input in his joints…..talks non stop, spins, jumps, etc etc etc. He tipped the kitchen chairs back on two legs constantly and fell  from them daily. so now he sits on a chair I brought in from the garden that is more like a stool he can’t tip back , because there is no back to push off of.

he wears me out. he sucks the energy out of me mentally and physically.

Even thought I know all of this and do things to compensate for it,give him extra leway because i know it is a thing and he is not doing it to annoy… he drives me bananas after 12 hours of him constantly yammering on and on and on and ON…and spinning, and jumping and talking too loud ( no volume control).

the only time the child is ever quiet is when he is asleep and with the nature of his neuodiversities and just simply getting older, he requires less and less sleep.

If he is awake and is silent, I assume he is hurt or sick…aside from getting lost in lego upstairs ( and even then I can still hear him talking to himself), or being wrapped up like buritto in a blanket to sooth himself while watching a movie he adores like Tron, Cars, anything with a dog in it), sick or hurt is the only time he’s quiet when he is awake.

he’s a total ball of energy, and makes me wanna pull out my hair and deafen myself most days.

And then…. when he is asleep…….i miss it.

#spd #capd #motherhood

Fork & Knife

Sensory boy has a bit of an issue with pronouncing some things due to how he hears things. his t’s are often d’s and his b’s and p’s are interchangable in words as well.

Sometime when he needs to say AND he says AN, i think it is due to how he doesn’t process an entire word when his brain receives the sound. It can make for some funny moments because of how *I* hear with my auditory processing, and how *HE* pronounces words due to his.

he just came runing in the house and said “i need a fuckin knife”

or so *I* thought. I asked him, “you need what?” as he ran to the kitchen. I don’t react negatively when I misshear, because I know that this is most likely the case. But still I need to ask.

He came back to the living room, heading back out to the tent, holding up a fork and knife.

“i need a fook an knife” and off he ran again.

“AHHHHH”, I said… “OK then”…

I am Blessed

You know, it doesn’t matter how long it has been, or how far apart you are, or the things that have gone on in the past…True family is always there for you when you need them.

That family can be blood family, friendship family, neighbor family, or community family…one thing I have learned in our life with each of us having differing needs and disabilities, is just that.

I may bitch a LOT to get through the everyday stress…this is kinda what this blog is for…but I am very blessed in my life because of the true family and support I have in my life.

I told my mom and dad about the waiting for an audiologist test for the boy, from my mom’s asking on my FB wall the other day about his CAPD ( Central Auditory Processing)

Today I did some calling around to find out about alternate ways to get him tested faster.

I’ve been waiting for months to even HEAR anything back about a future date for the OHIP covered testing at the hospital in the city. My Nurse Prac. is not taking me seriously and the boy’s hearing is getting worse, he is loosing /not developing consanant sounds in his talking, is talking more “cotton mouth” like a deaf person with the soft pronouncing of his words, much like my dad did/does, and he is getting very frustrated when he tries to communicate with people. I’m seeing that “i don’t know what you just said, but I’ll smile and nod anyway” look on his face, that my dad often had in those situations.
I’ve asked twice if the referral has gone through because I have not heard anything yet and i felt that she got annoyed with me for being over worried and impatient. “there’s a process, these things take time” instead of just saying, “I see you are concerned, I’ll look into it for you.”

i’m SO SICK of this woman not taking my family’s issues serious. I’m trying to find a new health care provider, but so far no one can take us, and anyone in the county who is available refused us because we are HER patients, and they are on the same health care team, and they won’t take patients away from each other.
So anyway, I had called an audiologist and asked some questions…enquired about cost, coverage etc… it was SO REFRESHING to talk to someone who BELEIVED me when I told him my concerns and the signs my boy shows of CAPD. They squeezed us in for ASAP, and he said, “if you grew up with a deaf parent, and have mild CAPD yourself, NO health practitioner should be minimizing your concerns with him fulfilling ALL of the preliminary criteria for CAPD.”

So, on the off chance I can’t get the testing covered by our Disability, I had written my mom an email and asked if they’d loan me the money to get a hearing test on our own faster. My dad has been essentially deaf even with two hearing aids since I was 9…he had a cochlear implant at 55years old, and got back 65 percent of his hearing! He heard bacon fry for the first time in nearly 30 years when he was 55 years old.  I can TALK ON THE PHONE with my deaf father. we now call him bionic Poppy, because he has digital ears technically. He can “turn his ears off” and be completly deaf when he is not hooked up to his implant. He says he sleeps REALLY WELLlo.. anyway…i’m getting sidetracked…

When I got home from swim class with the kids, my mom had emailed me back and said “of course, we know how worried you are, as are we with the family history of nerve deafness, and no we don’t want the money back.we’re glad to help. All you need to do is ask!”

So I have an appointment for the boy with an audiologist on June 21st.  It’s a day trip, in a farther away city, but I don’t care. I’m hoping for good weather and a good health day for hubby, and i’ll pack a picnic, and we’ll make a day of it. At the appointment, he’ll get the full testing needed. A physical hearing test, the newborn screening nerve test they did when he was born ( which he technically “failed” because they did not get a reading, and the midwife assumed that meant her device was broken), and then the test with probes on his ears and head to see what he processes from ear to brain, while engaging in typical conversation/play and talking during background noise etc.

My dad  knows what it is like to live without hearing well and growing deaf and he doesn’t want that for his grandson. He’s too smart a boy to be held back by any level of deafness. When I told my 5 year old about getting his ears tested, he was genuinely happy, and said he’s wanted his hearing tested, because he can’t understand people when they are too loud to him, and he can’t hear me when the disswasher is running, or when daddy is talking”.

This is a BIG deal for me…My parents are not well off by ANY means…. they get by on my father’s disability pension for his deafness & arthritis from a school board as a bus driver, and my mom works part time giving samples in a grocery store like they do at costco, and kills herself physically doing it…so for them to just give us the money, no questions asked, means A LOT to me!

you have NO idea how relieved I am right now! I’m sittin’ here with tears streaming down my face!

Babies Who Don’t Respond To Their Names Could Indicate Early Detection For Autism Or Other Developmental Disorders/Delays

Source:http://www.sciencedaily.com/releases/2007/04/070402162106.htm

ORiginally titled”

Babies Who Don’t Respond To Their Names May Be At Risk For Autism Or Other Disorders”

I don’t consider being BORN with a certain set of characteristics that can be labelled autistic or other developmental disorders, to be called “being at risk” for it later in life, because they can possibly detect these things earlier.

It is clearly a case of , they are seeing earlier signs on development that may indicate communication delays, and or development milestones being met later than “typical” .

I’ve seen signs in my daughter’s sprectrim idiosyncrancies since she was a baby, as early as 5 months old, when she preferred alone time, and her own sleep space, and would only snuggle or cuddle when SHE wanted, and would get outright flippy screaming if you stopped her activity without enough notice.

By 2 years old, “Raising your spirited child” was my parenting Bible, and the first indication to me, that my daughter was  not typical, and that as a parent I was not alone with a spirited child.

I knew in PREGNANCY with my son, he was a hyper child.

************************************************************

ScienceDaily (Apr. 4, 2007) — Year-old babies who do not respond when their name is called may be more likely to be diagnosed with an autism spectrum disorder or other developmental problem at age 2, making this simple test a potential early indicator for such conditions, according to a report in the April issue of Archives of Pediatrics & Adolescent Medicine, a theme issue on autism spectrum disorders.

Although as many as half of parents of children with autism report concerns about their child’s developmental progress before the first birthday, the disorder is usually not diagnosed until age 3 or 4, according to background information in the article. “Earlier identification of autism offers the possibility of early intervention, which holds promise for improving outcomes in children with autism,” the authors write. “This has motivated a growing body of research that aims to ascertain the earliest reliable indicators of autism.”

Aparna S. Nadig, Ph.D., of the M.I.N.D. Institute, University of California Davis, Sacramento, and colleagues assessed the tendency of infants to respond when their names are called, which is “one of the most consistently documented behaviors in infancy that distinguishes children later diagnosed with autism from those with typical development or developmental delays,” they write.

Infants whose older siblings had autism, and who were therefore at risk for autism, were compared with control infants who were not at high risk of developing the disorder. While each child sat at a table playing with a small toy, a researcher walked behind the child and called his or her name in a clear voice. If the child did not respond after 3 seconds, the name was called again up to twice. Fifty-five at-risk infants and 43 control infants completed this test at age 6 months, and 101 at-risk infants and 46 control infants were tested at age 12 months.

“At age 6 months, there was a non-significant trend for control infants to require a fewer number of calls to respond to name than infants at risk for autism,” the authors write. “At age 12 months, 100 percent of the infants in the control group ‘passed,’ responding on the first or second name call, while 86 percent in the at-risk group did.”

Forty-six at-risk infants and 25 control infants were followed up for two years; three-fourths of those who did not respond to their name at age 12 months were identified with developmental problems at age 2. A total of 89 percent of infants who did not have an autism spectrum disorder (including autism, Asperger’s syndrome and related conditions all defined by deficits in language and social skills) and 94 percent of infants without any developmental delays at two years responded to their name on the first two calls at one year. Of the children who were later diagnosed with autism, half failed the test at one year, and of those who were identified as having any type of developmental delay, 39 percent failed the test.

“Thus, failure to respond to name at the well-child one-year check-up may be a useful indicator of children who would benefit from a more thorough developmental assessment,” the authors write. “It will not, however, identify all children at risk for developmental problems.”

“Since this task is easy to administer and score and takes few resources, it could be incorporated into well-child pediatric visits at 12 months of age,” they conclude. “If a child fails to orient to name, particularly reliably over time, this child has a high likelihood of some type of developmental abnormality and should be referred for more frequent screening, comprehensive assessment and, if indicated, preventive early intervention.”

This research was funded by a grant from the National Institutes of Health.

Everyday Conversations

The Mundane One and I over Lunch.

me: you should have seen the boy on the balance beam this morning, he was really going..so fast, he was flying like a bat in the wind

hubby: bat in the wind?
( I always get those “old sayings”/metaphors/assimilies wrong since I grew up with a deaf father, who heard them wrong all his life and passed them onto me, so i knew I said it wrong by his question)

me: ya, you know. like really fast.. I guess that one is wrong too right?

hubby: uh YA.. you’ve been saying that for months now, and I keep trying to ask you what the hell…

me: ya. i dunno. i got that one from my dad I guess…. bat out of hell then right?

hubby: ya I guess that would work

me: whatever, he was going really jam fast!

hubby: jam? what is THAT?

me: giggle.. ya. I dunno, just came out, meant to say damn.. but…

hubby: jam tho?

me: YA… I’m trying to curse less for fuck’s sake ok? so, I said JAM instead of DAMN

hubby: (laughing) so.. ok.. how’s that working for ya so far?

me: really fuckin’ great! :P

hubby: ( shakes head and laughs at me in the knowing.. you’re hopeless, but I love ya anyway look)

COOL mom points

So yeah.. I’m watching Big Bang Theory with the hubby the other night and sheldon talks about spaghetti with hotdogs in it, and I think “OMFG no, people don’t really do that do they!?”

But given I know people who think a real nice spaghetti dinner is pasta boiled and thrown into a can of Tomato soup! GAG

So I did what any normal sane person would do, I googled it.

And when i searched the pictures results…which is how I decide what result page I go to first for every search I’m doing-this little concoction for kids came up when I looked for  Spaghetti with cut up hot dogs.

So I decided to call them spider dogs with just 4 pieces of noodle. I made them for a surprise for the kids for lunch yesterday, and then tonight when we got home from the girls swim glass, and needed supper fast, they again asked for spider dogs.

Easiest Cool mom points EVAR.

Building Sensory Fun

The boy insisted on pulling the heavy 20 kg bag of sand to the box hmself.. he did a great job! heavy sensory therapy work DIY style.

He’s been in the sand box ever since. The sand has always been one of his most favourite things to do. I can currently hear him humming to himself under the cherry tree playing with cars in the sand.

Homeschooling before supper

Hubby and the children decided to do some chemistry/science tonight
making crystals, while I made a science experiment of cooking dinner.
I snuck the picture, he doesn’t like having his picture taken, and
he’ll be upset that I did, but I don’t care…he is a good daddy &
that needs to be documented :)