Autism Awareness Month. Day 13. 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…

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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…

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Autism Awareness Month Day 9 2015. I is for Independence.

Remembering how hard our kids work is important to understanding just how strong they are

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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…

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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.

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Autism Awareness Month. Day 6 2016. F is for Food.

Running through Water

Day6

F is for Food

This breakfast is 8 years in the making…A2 eats a total of 9 different foods..all presented in a certain way…all brand specific. Starting from 0. He has worked so hard to get to this point and I feel a weird balance of pride, frustration and futility when I see this plate. Feeding issues in autism are common and are outside of “oh, all kids can be picky eaters” or “just tell him if he doesn’t eat dinner, he won’t get anything later–it’s not like he’ll let himself starve”. Because actually….he will. Many children with autism have serious food aversions and feeding issues. The reasons are varied but tend to be due to sensory, texture, medical or obsessive-compulsive issues. Behavioral issues become deeply ingrained in these kiddos when eating is paired with physical pain due to gut issues so common in kids with autistic disorders and can…

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Day 5 (remix!): 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…

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Autism Awareness Month. Day 4 2017: D is for Dreams. Poetry for My Son Without Words

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What do you dream about sweet silent boy? 

The nights you rise up out of your bed and wander our dusty floors?  Are you looking for something you cherished for a moment in that mysterious place between the consciousness of dream and the awareness of waking?

Are you on an enchanted night walk floating through a maze of fireflies and bubbles unaware of the world that holds you back?

Could you be lost navigating the spooky hallway forest, familiar and friendly when the path is lit by the morning sun?

What do you dream about sweet boy?

Those nights your shriek summons me like the siren’s song to find you swimming in your twisted sheets?  My soft words are not your anchor.  You push me away from the helm with your kicks and punches as if resisting being dragged to the bottom of the sea by the mighty whale you have have come to exact revenge.

How do I teach you to breathe when you emerge from the black water instead of screaming?

You wake gasping for air.

What do you dream about sweet boy?

When you sit bolt upright rubbing the glitter of sleep deeper into your eyes with the fists that once fit in the palm of my hand?  You rise with a dreamy smile that does not release either of us until you snuggle in as close as you can. It is how you summon the halcyon to create the calm winds that smooth the waves.

You drift safely on your back.

Do you know you dream sweet boy?

Can you separate day from night? Do your lost words in the light morph into the demons in the dark who suck the words from your cherub lips?

Do nocturnal fantastic birds of flight carry you away and release you from your forced secrets of the day?  Are those birds the thing with feathers?  Do they chirp the same songs they sing to me?

Do you not dream at all sweet boy?  

Perhaps instead you play with angels who speak your native tongue.  You drift off to the place where I am not allowed to go with you. You run freely through the fields of joyous detail or you ramble in teary despair in the wings of the worldless knowing you are understood and safe.

Because no matter the circumstance of night, in the morning  you wake wide eyed and blinking and peaceful.

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Day 4 2016: D is for Diagnosis

Day 3 2015. C is for Coping

Most of what I want to pass along this month is about resources, how to advocate and topics to be aware of—but I also want to give you some of the past A-Z information that might help raise better awareness for your families and friends. Here is one of my favorites:
DAY 3 2015: C is for Coping

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Day 3

In the most typical of situations sibling issues exist. For sibs of those with significant impairment, these kids are often the invisible bystanders. Their issues and needs sometimes take backseat to the immediacy and reality of their sibling with Autism needs. We ask them to deal with leaving fun events earlier than they would like, let embarrassing situations roll off their backs and stifle disappointment. The rate of having more than one child with neuro diversity is high. Sometimes, the less impaired child is asked to cope and step up in ways that would challenge even the most typical and mature of children.

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Autism Awareness Month. Day 2 2017: B is for Blogs

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About 9 years ago when A2 was 3 years old, he attended a social skills group with a speech therapist and 3 other minimally verbal children.  A2 was by far and away the most pleasant and social of the 4 kids in the group and at that point did not have an Autism diagnosis.  I didn’t know WHAT was happening with him for sure. I sat in that lobby week after week wondering what A2 could possibly be getting out of the group given none of the children had any functional verbal language and a great majority of the time the adults were wrangling to keep the kids all in one spot.  After the final session, I sighed at the speech therapist and asked her what she thought was going on with my beautiful boy.  She asked me if I had ever heard of the book Schuyler’s Monster by Robert Rummel Hudson.  I had not.  It is a memoir written by a father about his wordless daughter.  A2 and I left the speech session and immediately went to the library to find it.  I suppose I would have been reading more about parent perspectives of young children with disabilities had a known my child had a disability.  But he was 3.  He had delays.  A gross motor delay, a fine motor delay, a speech delay.  He flapped.  But he also looked at me and smiled, knew his name and cuddled.  Other than the cache of bewildered parents who sat in lobbies at therapies, I had no connections to others going through similar circumstances. As an action oriented person, I didn’t know I needed to have those connections.

That is until I read Schuyler’s Monster. 

In some ways, I feel like that is where my story begins.  It started as an easy read because Rob is poignant, funny and his words wash over the pages and get right into your brain.  And. Then.  To put it simply…I was knocked on my ass. He was telling my story.  He was me.  And Schulyer was almost exactly A2.  Right down to the personality.  I had to set time aside to read when I knew I didn’t have to be “on” because I wasn’t sure how what I would read would affect me for the rest of the day.  Schuyler has a rare genetic disorder called Bilateral Perisylvian Polymicrogyria.  I called A2’s neurogeneticist at the Cleveland Clinic and insisted he himself go back and read A2’s baseline MRI and not rely on the radiologists report. He humored me and alas, A2 and Schuyler did not hold this in common.  I finished the book and felt like I was underwater. What was I going to do without Rob, Julie and Schuyler?  I felt connected to something and yet I had never felt so alone in my whole life all because a piece of cardboard filled with paper and a beautiful little girl on the front told me life might not be what I think it is.  I was not an avid reader of blogs and at that point was not on social media.  I found his blog Fighting Monsters with Rubber Swords and reconnected with his words.  Soon, I found another blog that spoke to me much in the same way written by a teacher who had an autistic child called Flappiness Is.  At this point, we had an autism diagnosis and I was in the throes of learning to advocate for my child in ways that rocked my world. Leigh was there to say the things I couldn’t say. Then there was another (which is no longer around) that made me laugh about our situation when I needed to laugh about it.

I now had a community and resources I could access whenever I needed it.

I am an accidental blogger.  I wrote 3 posts back in 2010 and when I realized I really had nothing to say, I was done.  It wasn’t my time to talk.  I don’t know if it is really my time to talk now, yet here I am.  Instead of following 3 blogs, I follow dozens and all for different reasons.  I have met the most amazing folks along the way because of it including the now very grown up, very kind and very inspiring Schuyler.  And she seems to be exactly the person I hoped she would grow up to be when I met her as a little girl as typeset words sitting on my couch 9 years ago.

There is no need to be alone if you cannot find “your people” in your community.  I never dreamed that some of my closest confidants are people I have never met or only briefly met in person. This list is not exhaustive…..and most categories will overlap, but my resource list of favorite blogs/social media folks you might want to check out (note also most blog links will be the same name on Facebook):

Day 2 2015. B is for Boredom

Day 2 2016: B is for Behavior

DAD PERSPECTIVE

Bacon and Juiceboxes

Jason Hague, Writer

Just a Lil Blog

Dad Enough

Autism From a Dad’s Eye View

Autism Blues

Stories About Autism

The Spectral Zone

The Autism Daddy

PERSPECTIVES FROM THE SPECTRUM

Autistic Not Weird

Autcraft

Seriously Not Boring

Deciphering Morgan

Autistic Speaks

Kerry Magro

Anonymously Autistic

Autism Uncensored

MEMES/HUMOR/KEEPING IT REAL

Autism Odysseys

Just a Minute My Cape is in the Dryer

Ink 4 Autism

Rantings of an ADHD Mom

ALL THE REST

David Snape and Friends

Carrie Cariello

Love That Max

Finding Cooper’s Voice

Take Another Step

Autism With a Side of Fries

Herding Cats

From Motherhood

Our Adventures with Riley

Special Ev

Walking With Drake

A Day in Our Shoes

Special Books by Special Kids

 

 

 

 

 

Autism Awareness Month. Day 1 2017: A is for Ableism

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Ableism: discrimination or prejudice against individuals with disabilities

(https://www.merriam-webster.com/dictionary/ableism)

“How old is……are you?” the little girl in the pink rain boots corrected herself as her eyes darted from mine immediately to A2’s.  He was standing behind me and flapping excitedly anticipating a single engine plane landing from the observation tower at the regional airport where we all stood.

She licked the open space between her missing teeth and twisted her body from side to side as I looked back to A2 since he wasn’t answering her. “A2…..this little girl wonders how old you are.” I said to him as I touched the corners of my mouth as a starting cue for a long /e/ sound.

“Sevuh.” he said without looking way from the window.  I touched his back and then his chin and he looked up.

“Eeeeelehhhvuh” he replied, eyeing me closely for the cue.  I looked back to the girl to see if she understood.  She bit her lip and looked up at her own mother.

“Yes, you ARE eleven” I clarified and then paused to gauge interest. “A2….you could ask her ‘how old are YOU?'” in a futile attempt to redirect his attention from the excitement of a helicopter taking off from a landing pad.

Hannah was 7. And her brother was 5. And her other brother had his birthday this weekend….and he is 3. And her uncle lives in North Carolina and he came in to town for the party and now he was flying away back home. And there were green cupcakes at the party. With rainbow sprinkles.

STOP.

When you read this, what do you take away from this interaction?  How did it make you feel?  Did you picture yourself as the parent?  As the little girl in the pink boots?  As A2?  Or maybe you pictured yourself as the mom of the girl?

Since I was there, I will share my perspective.

  • Had A2 been in almost any other physical environment, he may have been the one approaching the girl rather than the other way around.  He may not have automatically told her “seven”, the oddly missing number from his rote lexicon from one to ten we worked tirelessly toward remembering to say during his seventh year of life.  Ironically, seven has been his automatic go-to age ever since then, especially when he is distracted.
  • I saw an opportunity to practice social language and articulation.  Another child asked him a direct and appropriate question in a shared environment.  In our society, it is the norm to make conversation in environments such as this. Even though he was distracted by something exciting, this is still the norm.
  • I saw another child who appeared to not understand what A2 said and also appeared to not know what to do next.  It then became my role to subtly articulate for the other child and to cue my child’s part in the conversation.
  • When I saw A2 was too distracted to engage in anything socially meaningful to this little girl, I engaged her for a bit to see if he would enter in at any point.
  • I was thrilled that this young child caught herself and re-evaluated how she wanted to ask her question and presumed A2’s competence by asking him directly.
  • I felt frustrated A2 missed a social opportunity.  I felt sad he would rather flap his hands.  I felt gutted to get more details about a 7-year-old-stranger’s weekend than I have ever gotten from my own child about his day.

I imagine the little girl’s perspective looked something like this:

  • I don’ t understand why he talks a little like my brother when he was a baby.
  •  I know when people want to know how old I am they ask me…..they don’t ask my mom.
  •  I wonder if he wants to know my uncle is flying a plane!
  • He didn’t know how old he is.  I wonder why he won’t look at me after I asked him a question…I feel uncomfortable now.
  • I’m glad that lady asked me about my weekend.  I love cupcakes with sprinkles and was glad I could share my favorite part.

A2’s perspective might be:

  • Humming of airplane motors sounds like the humming in my body.  The propellers move so fast, but that is how I see so many things…its like I can see each blade when they spin.  This is the only place I get to see anything like this! I’m so excited!
  • Mom is tapping me.  She wants something.  When I respond to her, she will then leave me alone and I can finish watching.  I better look up.
  • That little girl has nothing to do with this experience right now.  Why does she need to know how old I am when there are machines flying into the sky?!

Of course, I have no way of actually knowing the perspective of the little girl or of A2. I can only assume according to my own interpretations in the moment and based on my previous experiences.  I may be completely wrong.  The only perspective in which I truly have full insight is my own as evident in the richer description.

Is it possible that my intervention was sending a negative message to both A2 and the little girl because I didn’t fully accept where my child was in the moment?  Because I expressed feelings over the scenario, does that mean I perceive my child who happens to be disabled as less? Were my choices in this situation potentially fueled by own neurological/mental health differences?  Would it matter if they were?

If I did nothing, would the girl have pressed on?   Would her mother tell her “come on, he can’t answer you” and leave before the little girl could wait him out? Would she have learned that in the future not to bother to ask questions of kids who flap and have trouble speaking?

Should I have insisted he turn from the window? Should I have answered everything for him?  Should I have explained what she could do to connect with him in the moment?   Should I have insisted the mother help her child connect with mine when he didn’t answer? Do I represent all mothers of all autistic children?  Mothers of all children with Autism? All Autism Moms in this situation? Does she represent all 7-year-old neurotypical children?

I am a parent.  I make many decisions for my minor children every day. I make them do things that go against what they want to do because that is an uncomfortable reality of parenting.  Sometimes I give in to things usually because I am feeling tired or lazy. Other times, I just make the wrong decision or don’t respect their feelings and apologize later. The fact that I am literally my child’s interpreter due to his disability complicates this parenting thing because I cannot untangle the ball of cords that being a parent to my child vs. being a parent to my autistic child is. I  have no choice but to parent him from the only perspective I have day in and day out just like every other adult given the privilege of parenting. The thing I know for certain is every decision and action comes out of the intense and blinding love I have for them.

As a society, we are all learning together right now what it means to be inclusive, to accommodate and how language can affect disability rights, especially when it comes to Autism.  The growing pains with this process are palpable.  Subcultures and their preferences exist in any community often elusive to the general population but tend to sit right below the surface for the group affected creating a dissonance that effectively can halt any movement forward outside of the culture.  A simple/not so simple example: many adults on the spectrum prefer “autistic” as they do not see autism as a disability but rather as a difference.  Yet, in academia, person first language is still being taught and “autistic” is being used as a taunt by kids who are none-the-wiser that it is culturally a preferred term without negative connotation.  Some parent perspectives dictate a different mindset around autism preferring “has autism” and would never refer to their own child as autistic. As a professional in the field, writer and parent, I trip over how to refer to autism, my kids or myself for fear of sounding ableist and this nuance could alienate the very community for which I want to advocate regardless of my perspective in family systems theory.  When asking my own kids what they prefer, one says “yeah” to either option leaving me as his parent with the choice……the other has told me he doesn’t want to refer to it at all because he doesn’t care and he doesn’t know why it matters or why he would ever have to explain it to anyone to begin with.   Clearly, this hot topic within our autism community, this invisible topic to the general population, is a complete non-issue to my boys.  It is all about perspective.

These are complicated times.  There are many, many voices that make up the autism community.  There is a tentative balance in how we talk about autism and how we approach the disability perspective in the community. Perhaps it is because there are some great, big general rules of thumb when it comes to respecting individual differences and abilities and it should be apparent to anyone who stops to think for a moment.  Perhaps it is because disability voices should get precedence as representative to their individual needs and possibly the needs of others.  Perhaps it is because sometimes those individual narratives are different from the realities of many families and it becomes difficult to separate this inconvenient truth when there are no other options. My goal as a parent is to give my children as many opportunities to be successful and independent as they can be which means the choices I make for them as I google how to unwind that mess of cords will be based on their individual needs and the options and resources available. I also recognize that we do not live in a vacuum.  My experiences and access and circumstance dictates certain necessities.  I absolutely cannot expect that society as a whole will know or understand how to accept and provide the individual needs my child has based on his disability when I am not even certain I always know what they are.

There will always be Hannahs in pink rain boots who approach disability as a curious difference.  Whether she grows up with the same perspective is up to us as individuals, as caregivers and as a community in these brief moments. The one thing I know for certain is we are evolving toward a collective understanding from many different perspectives and these perspectives come from a place of respect and love. Almost always.  We all have to be better.

Day 1 2015: A is for Aides

Day 1 2016: A is for Advocacy