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Autism Awareness Month. Q is for Quirky

Jaycee Kemp1 Comment

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. 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 9 2015. I is for Independence.

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Day 9

An Occupational Therapist once corrected me in a meeting when I mentioned that A2 ‘s progress is like being in a race. She said “no, it’s like being in a marathon, you have to pace yourself”….but not having a child with a disability herself what she didn’t understand is that he needs to be front runner in that marathon if he has any hope of functional independence as an adult. As any kid ages, it gets harder to learn new things easily–neural pathways are set, myelination slows down…so early on every moment needs to become practice or a learning opportunity. We celebrate small steps toward independence with hope. After 2 years of task analysis, A2 can almost navigate a bathroom (with the exception of going) with minimal assistance. Yesterday, he independently ordered fries. But he cannot be alone or play outside without supervision, he cannot make his needs known clearly, he doesn’t know what to do in emergencies. A2 is not likely to ever live independently and as older parents without a caretaker for him this is terrifying. So we move forward and relish and celebrate every step forward with hope…and so does A2. Each step represents countless hours of work, practice and sometimes frustration. Everything he does takes 50x longer 100% more effort to learn than a child sitting next to him. His independence is truly the embodiment of a strong spirit and determination.

Day 7. G is for Grace, Gratitude and Generosity

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Day 7

Did you know that some companies will match your donations to non-profit organizations? Check with your HR department. This experiment of autism A-Z as it affects my family gets a little harder every day. Not because I can’t find the right picture or because I don’t know what to say…but more because as it does for many autism families I really prefer to keep whatever goes on in the inner circle (and even then….). I don’t like to ask for help….do any of us? I’ve had several people reach out privately to ask about charities. There are 2 501c3s here in Columbus started by Autism moms that benefit local families directly in many ways. Please check out both Fluttering Families and The Mother Ship Inc. on FB for more information and consider donating to help our community here in Central Ohio.

Autism Awareness. Day 5 E is for Elopement

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Day 5

E is for Elopement

“Check water first”. The most terrifying emergency directive a parent can hear….and this is the protocol for children with Autism who go missing. Elopement, wandering, bolting, fleeing. 48% of children with autism elope. Drowning is the leading cause of death in kids under 14 with Autism. We are lucky-A2 only gets distracted and wanders to find things that are interesting without regard to safety or whether a familiar adult is nearby–but he does not run from us–which prevents so many families from being able to go in public safely with their child. One of the things that makes A2’s non-elopement complicated as that he is not a risk…. until he is.  He can go a full year with staying in eye shot and then one day out of no where he will simply leave the house. With no warning. He also cannot tell anyone his first and last name with consistency or clarity.  He does not know his address or phone number despite years of practice.  He knows my full name, but unless you are a trained listener. you will not understand him.  We all know to approach a young child who appears to be lost, but most would not think to approach an older child or young adult. Be aware–this is one way we can all be a village to our families!

Unfortunately, there are limited ways to actually prevent elopement behaviors.  When we assume the function of behavior is escape we may be missing out on other factors.  Does he bolt and laugh while doing it as he watches you chase him (attention)?  Is he fascinated with streetlamps or water or heavy equipment and feels intense compulsion to go check it out (access or internal attenuation)?  Does he seem to leave only in specific situations or with specific people?  If you have a child that is a runner, consider tracking the behavior for antecedents and response or consequence (even when unintended), track the time of day and what was happening around him at the time.  Track WHAT the elopement looks like…does he run or is it more like walking away?  Does it change what it looks like based on the situation?  Besides lockdown and direct supervision, understanding your child’s behavior through data collection is your best preventative defense.

As far as what else you can do if your child is an elopement risk…again, limited but both high and low technology options can be lifesavers. If your county or police department have a special needs registry, register your child. There is a national initiative and grant called Project Lifesaver that your police department can utilize and get wristbands with gps or radio signal your child can wear. Keep an up to date photo of him on you at all times. Create a card he can carry with him with his information and use discrete trial training to teach him to hand it to someone if he cannot find you. Consider a cell phone and GPS tracking or the Find My iPhone App. There are tracking devices like http://www.angelsense.com available for a monthly fee. These attach to the inside of clothing.  Go online and search for other high and low tech options they are out there.

GPS tracking device reviews:  http://www.safewise.com

List of tracking, ID and safety products (not an exhaustive or all inclusive list): https://www.autismspeaks.org/family-services/resource-library/safety-products

It is easy not to move forward because we do not want to assume the worst…..but like for so many of us in many aspects of our lives with our kiddos…we have hope for the best…but plan for the worst.

 

 

Day 4. D is for Details

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Day 4

In grad school I learned this neat little thing called a ecomap…and then saw another mom post a personal one in a blog. A year ago, I decided to make one for the kids (for sake of privacy, a fourth of this map is not shown) For us, that means 37 total IEP objectives and 19 ISP service areas to track, 44 providers, 12 clinics and 6 agencies we are in regular contact. All before work and caregiving. When you meet a parent of a child with special needs–and if you run into them somewhere and they don’t seem to recognize you….or you already know one who seems extra high strung or flighty or snarky….well….cut them a little slack. Not everyone is built to keep this much in their head all the time.

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.