Apraxia

Autism Awareness Month. Q is for Quirky

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Day 17

“Why does he do that?” A common question for parents of children with autism. There is no easy answer for that in a global sense given each child with autism is as unique as any child without autism. Many times it’s because the wires are crossed neurologically causing some kids like A2 to perceive things in the world differently. Licking a basketball before he shoots it, flapping his arms whenever he is excited or anxious or hooting loudly when he sees something interesting….try thinking instead taste sometimes is like balance, repetitive movements are calming to the body and noise is quicker that coming up with words. Sometimes the quirk comes because the part of the brain responsible for things like memory, the time it takes to process information and the ability to take another persons’ perspective has a blip and experiences the world in the same way much like A1. Someone just said to me “I always thought he just marches to the beat of his own drummer”. And he does. They both do. My kids are as they are and as they should be but at the same time they do need to be functioning and hopefully contributing members of society. Sometimes though, to watch the struggle of loneliness because others don’t understand is painful and hope that I am projecting my own anxiety and that they are more resilient than I give credit for. This unique and quirky nature of autism makes my guys who they are…..and they are perfect to me. Perfect…and different, not less….

Autism Awareness Month. P is for Pediatrician

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Day 16

P was hard because there are so many things P can be for us. Passion, Pediasure, potty training, poop, persistence (in a good way). But if this is about awareness, this is critical.

Early conversations over time had with doctors about both A1 and A2: Me: “He’s sitting up already but his hands are still in fists and he can’t grab anything-something doesn’t feel right. ”

Doc: “Wow. He’s just really uncoordinated.”

Me: “He can say way more than I think he understands-so I had a speech therapist look at him and she validated that, what is that?”

Doc: “That’s impossible. That therapist doesn’t know what she’s talking about.”

Me: “Since our move I’ve noticed he doesn’t babble in his crib any more and he only smiles at the microwave and the lamp, but not me.”

Doc: “You just moved…he’s getting used to his environment don’t worry about it (at 8 mos. old).”

I wish I could say that we just had a doctor who was incompetent  (and no, the picture is not of the ACTUAL doctor which would potentially explain how things would be missed), but I hear things just like this in my private practice all the time.

All. The Time.

If your gut feels off about something and you are dismissed by your pediatrician, get a second opinion. Seek out information online about early symptoms of autism. All the research points to early intervention as the key component to long term success with the symptoms of autism. There are programs that are now identifying autism in infants. Lack of eye contact, failure to meet developmental milestones (especially language), lack of responsiveness to their name, repetitive motions such as flicking hands in front of their face are just a few. Even outside of classic symptoms, there are some not so classic ones.

Both as a social worker, but also a mom, if you have a nagging gut feeling….”let’s wait and see if he grows out of it” may waste precious time.

Autism Awareness Month. N is for Night

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Day 14

This photo was taken over the Scioto River in broad daylight, but thanks to filters it looks like a cross section between day and night. When sleep is elusive for our children with autism and days roll into nights roll that into days… that sultry blanket doesn’t seem quite as enchanted and that line between light and dark not nearly as defined. I’m not certain that A2 has ever slept through the night in his life. For the first several years of his life he was up every 90 minutes or so. I was told to let him cry it out. So I did. And then abandoned the wholehearted attempts after 11 weeks. We have it easier than many. A2’s nighttime visits do not include damaging the house, self harm or escaping, but is instead marked with fitful wandering, bed hopping, laundry for diaper leaks and sometimes a sneaky visit with The Wiggles on the DVR. We wonder if his slow cognitive development and behavioral issues are exacerbated by exhaustion and we try to have patience in our own exhaustion recognizing that if he could sleep, he would. There is no simple answer for the underlying etiology of lack of sleep for kids with autism and hope that my guy doesn’t feel tortured by sleep being just a visitor passing through. In the still of darkness I wonder if I am the only one awake in the world. Shadows turn into demons of an uncertain future and the quiet becomes a deafening blare of anxiety that the hustle and pace of the day drowns out. Perhaps even if A2 could have restful sleep, I am fairly certain that I still would not.

Autism Awareness Month. M is for Music

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Day 13

M is for Music

In the presence of music, A2 is the conduit that paints the musical mural that you cannot see just by listening. It is a source of joy, excitement, passion and communication for him. Though A2 has a high desire to communicate his speech/language disorder makes it very difficult if not impossible sometimes to do so. A symptom of his Autism is Childhood Apraxia of Speech. Communication disorders that involve speech directly are a common issue for many children on the spectrum. A2 often knows what he wants to say, but cannot make his mouth follow the step by step instructions his brain wants him to in order to form sounds, sentences or ideas. This is a motor planning difficulty. There are phonological errors, jargoning and word finding problems and oral-motor weakness in addition that prohibit him from effectively communicating verbally. In addition to the 6 hours a week he receives of Speech therapy, Occupational therapy, Physical therapy and social skills training, A2 also receives Music therapy. Through music, he is learning how to say our names, his address and phone number. Music is his best friend, his motivator and his unique yet universal connection to everyone around him.

Autism Awareness Month. Day 12. L is for Love

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Day 12

L is for Love

Because L is ALWAYS for love when it’s about your child.

As a parent, as do many special needs parents, I find it confusing and sometimes a little unsettling when people say to me “I don’t know how you do it” or “I don’t think I could do what you do” or elevate my parent-ness to the likes of a saint. People are well meaning-I know the awkward sentiment is often a compliment of sorts, but it’s hard to respond. What is the most difficult thing you would do for your own child? Push him out of the way of a bullet and take it yourself? That would be mine, because caring for my child and meeting his needs is not even a close comparison to taking a bullet. We love our children with parts of our souls that we did not know existed before they were here. And I promise, guarantee, pinky swear you absolutely 100% WOULD know how we do what we do and you would do it too because there is no other option in the surrendered obligation of the deep love for your own child. So…if you have said this before to an autism parent, do not fret I don’t speak for everyone–we get what you mean. Moving forward consider this sentiment and instead try, “what is it like to be ______’s dad?” Or “how is physical therapy going?” Or “what is the most useful thing I can do to help?”.

Autism Awareness Month 2015. K is for Kismet.

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Day 11

In the month of our 15 year anniversary, I can confidently say we have embarked on a journey neither of us could have expected.

In some ways I wonder if our trek is easier than others since we never had musings of what our unborn children would be like or what kind of parents we would be.

…or if we would be parents at all….

I believe in a judicious balance between predestination and free will. Sort of like walking into a movie complex. You can pick the movie you will see, but once you choose it, the plot and ending remain the same. It is up to you if you decide to leave the theater to get popcorn or simply decide that movie is not for you and you should have never listened to Siskel and Ebert’s reviews to begin with.

All marriages require a gentle balance between cohesiveness and independence….and especially with families like ours. Stress is a constant, sleep deprivation a given, and child rearing? Well, throw out everything you ever thought you knew about that. Not everyone can do that.  Usually, the stronger is left holding the bag on their own.  I know too many families like that and watch in awe as the parent left behind carries the weight of her world.

Through thick and thin we give each other the space we need, recognizing we are in for the long haul.  Our children are who they are supposed to be.  We make the same mistakes as every other parent in every other union, but with the knowledge we must be united as forever parents, even long after we are gone.  And for that, perhaps we are luckier than most.

Autism Awareness Month. Day 8. H is for Haircuts.

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Day 8

H is for Haircuts

Lots of autism moms become expert level beauticians early on. I can scissor cut the hair of a moving target in 10 minutes or less without making my subject look like Moe from the 3 Stooges. But it’s been a long time coming…A2’s flip switched at about 24 months and haircuts became Wrestlemania meets the Exorcist with half-nelsons, projectile vomiting, sweating, injuries and lots of public interest. Many children with Autism fear hair cutting time as it becomes sensory overload for them. In addition to having to sit still for extended periods of time, the smells of unfamiliar products, the feel of a wet head the sounds of clippers buzzing becomes a sensory nightmare. Haircuts are pleasant experiences now in the comfort of our own bathroom and paired with Monsters Inc on the iPad and the promise of getting to use the vacuum for clean up.

Day 1. A is for Aides

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Day 1

A is for Aides.

Though I can’t find pictures of all of them, they have all made a significant impact in our lives. Without them, A2 would not have made the gains in language, socialization and self care that he has. They have cleaned vomit out of their cars, do not ruffle at the idea of diaper changes, and have endured power struggles with grace and maturity. They are the extra eyes and hands in a world where we have none but need 20. They are young and move on with their lives from us but we have always known that we sacrifice longevity for love and are happy that so many reach out to stay part of our village.