Autism Awareness Month. T is for Teachers and Therapists

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T is for Teachers and Therapists

112. A2 has had a total of 112 different teachers and therapists in his short 11 years. Some were hand- picked….some chosen by fate and luck of the draw. Some were published…lauded recognizable names….some were quiet presences of whom I cannot remember their names. Some have been with us for the majority of his life. Some have only jumped in for a blip of time in his almost 105,000 hours on this planet. Some were stellar….life alterers….some just showed up because they had to. Some interpreted my coolness or seeming indifference to them as being non-caring. Some recognized that I always had my child’s best interest in mind all the time and understood it was important for me not to be too attached for fear of losing perspective and not holding them accountable should his learning derail. All have had a permanent impact on my entire family’s lives and for all of them, I am grateful.

A2 was about 2 years old in this photo. Debbie Jo was one of the first handful of professionals to work with him, and at the time, I had no way of knowing this fact. She was a paraprofessional in his early intervention program and always made sure to seek me out when I would come to pick him up to give me feedback about his day. When this post was first published, she was very ill with a long bout of cancer. Despite her county job, insurance, COBRA and her life savings eventually ran out. Despite giving of herself and opening up her home to those less fortunate, at her most desperate moments, because a GoFund Me account was set up to help with medical expenses, I would have known nothing about the exceptional kindness and generosity she gave to others throughout her life other than that small blip on the map when my child showed up in hers. Debbie Jo died last year and I pray that it was with peace given the level of selfless life she chose to lead that I was never aware.

We fight for our kids. Many times that fight is with teachers, therapists and administrators. They chose their careers and they have a job to do. The are human beings. We know the people who are in this for the good fight and we know the people who should have left years ago. We know the people who don’t get it. We know the people who burn the candle at both ends and we know people who have dropped the ball. I have fought many of these people who teach my child, but typically as collateral damage in a system that is failing helpers and victims. Fight…fight, fight SO HARD for your kids. ADVOCATE like hell for yourself if you have a disability. Don’t be afraid to call helpers out, but BE FAIR. Ask to see data. It is your right to see it. It is your right to question it. Do your research. If you have an instinct there is a problem, be sure to tell them you are coming from that place rather than accusing them…but again, ASK, ASK, ASK how to be reassured. In their world,  no matter how destroying it is to us, your child may be a learning experience.  And if that is all they can offer–it is all they can offer.

In our world…we only get one time around. We don’t get a do-over. Recognize their human-ness and recognize necessity and try to create the most cohesive balance.Featured Image -- 1500

Autism Awareness Month. O is for Obstinate.

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O is for Obstinate

All kids can be defiant. All kids can be persistent. Most can be both at one time or another…..however the persistence of a person with Autism can sometimes be far outside typical willfulness of even the most obstinate of kiddos. Most of this stems from intense need for familiarity, order and sameness of routine. This rigidity is part of the diagnostic criteria of Autism Spectrum Disorders. Sometimes I have no idea what will trigger A2 into a 3 hour long battle of wills. What can be a 5 minute routine one day can take 2 hours the next even when he knows that routine ends in something he enjoys. A1…no matter how much punishment, berating or time outs he got, he would get right back up and do the same thing over again. One summer I decided to ‘put my foot down’ and send him to the time out step after every single infraction.  No warnings.  That should teach him!  After about a week of this, there was a day that I had sent him 17 times all before my husband got home from work. And he went willingly. Every. Single. Time. Something was very wrong and thankfully I had a moment of clarity.  I got a clear cup, drew some lines across it and found a bag of marbles.  Every time I caught him doing the right thing, I would throw a marble in the cup with the caveat that he couldn’t point out to me how good he was being. Unless he hurt someone (which he never did), there was no more time out step. Every time we filled the cup to a line, he got to pick what we did next in our day.  If we got to the top (by the end of the day), he could get a dessert after dinner.

Just. Like. That. Everything was different. He would listen the first time and look out of the corner of his eye to see if I was digging for a marble. He got double marbles if he initiated social interactions. Before long, we were engaged in pretend play in the basement.

I had someone close ask “Don’t you think it might not be autism?  Don’t you think it is could be his personality?”.

“Well, ” I indulged “if everything we do serves a function, what function do you think his behavior served that week?”  Without much hesitation, she drew her hand up as if she was grabbing something and said “To have a ‘gotcha’ moment!” I thought for a moment.  “What 4 year-old would rather sit on a step over and over, day after day instead of playing just to get under his mother’s skin? Isn’t a week long enough to learn that without the behavior increasing?”  A four-year-old.  Clinically, that would be a much, much bigger issue than autism.

Before that, I used to joke about how even a dog can learn to salivate to the sound of a bell when paired with food over time, yet I could not get my child to understand how his behavior had anything to do with the consequence he would receive. It’s one of the most bewildering and frustrating parts of parenting because regular consequences do not work. Though A2 may connect consequence to behavior in the moment, the pathology outweighs all and it is likely that he may not learn from his behavior for the next time.  A2’s Childhood Apraxia of Speech required us to do drill work with cards for sounds and words over and over.  Did we create some of this rigidity with him because of this?  Probably.  Did I have any idea that would be possible then?  No. But the trade off was that he learned to try to speak and can make some needs known so that people other than me and my husband understand.  Was it worth it?  As a parent with limited understanding and resources  I would have to say “yes”, because he displayed rigidity before that.  Even as I add to this blog post from the original version written two years ago, I realize how much I have learned to even question if this was possible.  We have lots to continue to learn.

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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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 wordless 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

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

Clutching at the Heels of the Disabled: Why You Should Be Wrestling With the Idea of “Handouts” in Healthcare

white-1184178_1280I read a story this morning in the news about a woman in Texas who stopped on the side of the road to chat with a homeless man.  Since she passed him in the exact same spot  for three years her curiosity finally got the best of her . You can see it here.  He was thin, unshaven, filthy.  We’ve all passed “him” on the side of the road, haven’t we?  Remember the Man-With-The-Golden-Voice several years ago who hung out by the highway and  became a media sensation?  I passed him…sometimes twice a day on the way to my child’s school.  There he was–all wild haired and looking strung out. And then there he was on Dr. Phil with a Cliff Huxtable sweater and a haircut.  A former radio announcer who succumbed to addiction.  We were all cheering him on–he had a Golden Voice and would contribute to society with those gilded vocal chords.  And my, wasn’t he handsome with that haircut?  He could practically be someone we knew!

I digress. This woman from Texas stopped to ask this man why he was always in the same spot all day, every day.  He told her he was waiting for his mother because that is where she left him.

He was waiting for his mother. Right where she told him to wait for her. 

To be sure, his mother was not coming back and this man  struggled with mental illness.  But maybe she really did leave him right there the last time he saw her.  This could very easily be my beautiful boy.

Let me give you some background on this….

What you might not know is that he didn’t suffer from mental illness…that came later in life.  He also had Autism with a speech disorder and a learning disability.  He was raised in an affluent suburb with the best schools in the state but they failed to teach him to read.  This man’s parents were older when he was born, were highly educated, had good jobs and didn’t retire until they were forced to.  His grandparents were all elderly and required care themselves. His father had excellent medical benefits at work that covered most of his care and his mother was extremely resourceful and was able to access everything available from funding to therapies to alternative treatments.  This man’s parents saved as much as they could and because of his unique needs, his mother could not work full-time.  Care for a disabled child is a commodity.  In childhood, the man’s parents tried to give him the most enriching life possible with as much exposure socially as they could.  He found so much joy in being out in public going to sporting events, concerts, religious congregation events and festivals. His parents looked at spending money on these activities as investments since staying at home did not provide him with any social opportunities at all.  After he was about four years old, there were no more parties or play dates or neighborhood shenannegans. His parents were his best friends and gave him a life outside of the house.

This man was once an exceptionally adorable little boy and it was so easy for him to get attention and love almost anywhere he went.  That is, all the way up until adolescence.  It became confusing to him when people didn’t respond in the same way when he would wave at them and say “hey!” or approach their table in a restaurant just to say hello.  His parents put off making a trust because the idea of appointing a guardian was so daunting.  How do you ask someone to make sure your child is OK for the rest of THEIR lives?  How do you ask them to make sure that child has a guardian beyond THEIR lives as well?  Given his parents became increasingly socially isolated as he grew older, it was hard for them to even consider options.  So they just didn’t and hoped for the best.

The boy grew into a man and it was important to his parents that he felt like one. They insisted he held a job and helped him find work wherever they could.  As they grew older, their health issues became too much for them to be able to continue to change diapers or physically help move the man to safety when he got upset and ran in the direction of danger.  The man’s health care waiver ran out when he turned 22.  Reluctantly, his parents dipped into their accounts for his care and in less than 5 years, they ran through their life savings. The same amount of money that would have been considered sufficient in any other situation in old age.  The parents did everything right.  The man worked hard his whole life to be the most contributing member of society his parents could push him to be. And yet…..one day on the way to a doctor appointment, the mother asked the man to wait outside.  She was afraid that if the doctor saw she was trying to care for an adult with a disability he would be taken away…taken away to live in a substandard long term care facility…one that was short staffed where he would be living with strangers. The Medicaid cap would release him to the streets when it ran out. Well…frankly, it was better to let him wait outside, she must have thought.  That is until at that doctor appointment he determined she needed surgery immediately because all the nausea she was having recently turned out to be repeated heart attacks due to a blocked artery. Only she didn’t make it in time to let anyone know her beautiful boy was waiting on the curb for her.

And there he sat for 3 years.  Wandering for food. Wandering for help, but due to his speech disorder and illiteracy, there was no one who understood him enough to know who he was or what he was looking for.  He looked crazy. He looked drunk.  He sat and wandered until that nice lady finally stopped to ask him who he was.

This could be my son.  My beautiful boy.  The kiddo who is 11 years old right now. Of course, it is not.  I actually know nothing about this man from Texas or his background.  But I certainly can imagine this very real scenario.  It is a scenario that keeps me up at night with the exception of the kindly stranger and the happy ending on channel 10.  For those of you who believe people who live off the system have made their lot in life or that they are owed nothing…is this who you picture when you see the guy sitting on the side of the road?   Because that guy may have once been my beautiful boy….your white, upper middle class neighbor’s child who you thought was a ‘cool little dude’.  Where do you think those kids go when they have no one? (and if one more affluent person who knows my child says “well….THAT’S different” be prepared to introduce me to someone else you know milking the system.  Go ahead…I’ll wait right here.).  Because you personally know me and because you personally know him and we kind of look like you  does not make him more deserving than the dirty adult sitting on the curb you think you have never seen before.  That guy that is owed nothing. You just don’t recognize him because you keep your eyes on the road.

I don’t think…I KNOW that one day I will die. Unless I sell my soul to the devil, I am not sure how I will manage to work a  steady job through my own elderly death that will happen AFTER his . I keep reading how his care should all be on me.  And it most certainly is.  And my husband and I have done everything we are supposed to do.

Today.  Call your congress people TODAY.

Don’t know who they are?  Click here to get the name and contact of your National/State/Local representatives.  Don’t know what to say?  Pick out the parts of this article that spoke to you the most and read it to them.  Remind them that NO ONE is a throw away person….not any of their constituents.  Not even the ones that cannot vote.

Stop what is happening with the repeal of ACA.  $800 BILLION cuts in Medicaid are going to be made for tax cuts to people who don’t really need those tax cuts. Medicaid will come in block grants to states with caps….and those caps come quick.  Where will my baby go when he meets his cap?  1 out of every 6 children have a disability and many of them depend on their families to ensure the bulk of their care and with Medicaid to help where they cannot. I have split my time between working and paying taxes to the country I am asking to help and also providing his care.  What happens when my child is not in school and needs full time care?   How do you keep a job and ensure your commitment as a tax payer while also fulfilling your duty as a parent of a disabled child?  If I don’t have a job, he is a freeloader.  If I do have a job, I am a freeloader AND negligent. The circular logic for the reduction of assistance and subsidies is just that ridiculous.

I am glad to hear that man from Texas is doing well.  I am glad there are middle-class individual citizens out there who might stop their cars to find out how they can help.  This, however should not be my son’s disability policy. His life is worth more than a sound byte on the local news.

Autism and the Dentist: Top 5 Tips for Successful Visits

How in the world has it been 6 months since I have taken the kids to the dentist? After a rousing success this fall, I thought I’d share this again in hopes we can recreate using my own advice! Any tips or tricks for your kiddo at the dentist?

Running through Water

**DISCLAIMER**.  The first half of this is the How Did We Get Here part.  The second is How Can You Maybe Get Here part.  Feel free to scroll to the second part…I promise you won’t hurt my feelings.

“How’d it go?”  I hacked out with the phone resting between my ear and the bed.

“Well,” my husband hesitated, “After he bit through the little mirror thingy and puked all over the dentist she told me that you should bring him from now on since you have more control”.

I usually took A2 to all medical appointments but had succumbed to a virus that resembled the plague and the only thing worse than me having the plague is A2 having the plague.  Normally, Mr ATeam and I are a pretty good team when it comes to him but one area I quietly held resentment was having to be the heavy when…

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Why we do the things we do. The trauma edition.

After seeing a thread from another writer today about the topic of trauma response in reference to the state of hypervigilence as special needs parents and all of the universal agreement, I thought I would share this again as winter break winds to a close…..

Running through Water

-font-b-Handmade-b-font-mini-kraft-paper-font-b-envelope-b-font-5-8x9cmThere is a large manila envelope still sealed sitting on my desk. No matter how much I stare at it it doesn’t:

1. Spontaneously burst into flames

2. Disappear

3. Take care of itself.

It does not contain a subpoena, a warrant for my arrest or an eminent domain letter. It was not delivered certified mail or by official messenger. It was hand delivered by my 6th grader because the teacher very graciously contacted me ahead of time to ask me how I would like the prior written notice papers from the last IEP meeting delivered so I could sign and return them in a timely manner to the school. It has been sitting and judging me silently for over three months now as it sits untouched. I am reduced to a Pavlovian dog except my bell is an envelope and my saliva is anxiety. A crippling-can’t-get-any-thing-else-done anxiety. And I…

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Happy Holidays! I’m the Room Parent. I Know You Have Never Heard of My Kid, But……

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Pinterest success for a classroom party.  Though, watch out for that reindeer in the second row on the right…he clearly is up to no good.

How we got to December already is beyond me.  I feel like I just put up my Halloween decorations on the house and made my contributions to the Harvest party at school, yet the red and green bins from the basement are now out and I am filling out Evite forms and combing Pinterest to figure out what I will ruin three times before bringing it to the holiday party at school.

I am a working mom with  a 5th grader and a 7th grader.  In the last 7 years, I have:

  • been a room parent 7 times (including the year I was room parent in BOTH my kids classrooms)
  •  planned 9 Halloween classroom parties and 10 winter holiday class parties.
  •  baked an estimated 1000 gluten free friendly treats for classroom and school wide events.
  • been a chaperone at EVERY  Walk-a-thon, school celebration and field trip (one year at the Valentine’s fair in school I lost a kindergartner….and in all fairness and disclosure, no one told me he didn’t speak English….and I found him…)
  •  volunteered weekly in 4 different classrooms, shelved books in the library for 3 years and worked the cafeteria snack table
  • sold crappy novelty items no kid NEEDS at the school store weekly for 4 years
  • stapled, folded, stuffed flyers, envelopes, book fair propaganda, changed out bulletin boards, helped clean the building before summer break, cut out thousands of shapes for projects, hole punched writing projects, graded math papers, labeled book shelves, organized folders, passed out ice pops, redirected children, gave out hugs to kids I didn’t know, tied shoes, located ice packs, made meals for teacher appreciation days

I think you get the picture.  An estimated 2000-2200 hours of my time since 2009.  Basically….a 40 hour a week job for one full year. I rarely see my child during any of these hours spent at school. And before anyone thinks I am judging the non-volunteer moms, I am NOT a sanctimommy. And no,  I do not want a cookie, a prize or personal recognition from anyone.  Other than to say this….

I have had to land my helicopter on the roof of the school for two simple reasons. I have a child who doesn’t have the capacity to tell me about his friends and a school that only recently took steps to discussing making that meaningfully different.

This is not an unusual phenomenon.  I had a conversation with a special ed coordinator in another school district about this once.  She also “lives in the field” like I do having a couple of kids on IEPs.  I mentioned this struggle to her at which point she stated “I understand, but at some point, this isn’t the school’s responsibility (to help special needs parents get to know each other).  Since I was visiting her district professionally, I didn’t say much mostly because I had a feeling that her IEP-ers at home are verbal.

I didn’t start off this way.  I was your regular, run-of-the-mill, elementary school, product of divorced parents volunteer mom.  While the 1970s were not known for tales of excellence in parenting,  as a child, I was aware of the presence of the other moms who volunteered or were there for events during school. I promised myself I would one day figure out how to be one of the moms who ran the mimeograph machine on Thursdays.

Then Autism came along and and early on  I realized volunteerism wasn’t going to be a once-a-week-show-my-kids-I-care kind of activity.  My youngest was turning 8 and for the first time expressed excitement over his own birthday. “CHUCHEE CHEEE!”,  he exclaimed after I asked him where he would like to have his party.  Since he had not been invited to any  birthday parties since starting school, I wrote several school staff asking if they could help with names.

The only response I got was from the regular ed teacher with a polite reminder that due to confidentiality, she could not tell us the names of his friends.  She also reminded me that she would not be able to pass out any invitations if we weren’t inviting the whole class.  And that was it.

I was perplexed.  She did know my child had a severe communication disorder, right?  I politely acknowledged the ramifications of what she was saying and pondered in the follow up email if there were anything she could do to help us figure out a solution.

No response. So after a week,  I wrote again but with a much more explicit message.

My message was: “As far as I know, it’s not a confidentiality issue when one child approaches another for their name and phone number.  That’s how typical children do that.  We have programed the following into his talker (speech generating device):

“My phone number is ***-***-****.  Can you have your mom call my mom?”
OR
“Can I have your phone number?  My mom wants to talk to your mom”
Given its on his IEP –the need to prompt him to initiate social interactions as well as guiding him use  prompts on the talker, I am sure someone will find the right opportunity to help him with this interaction.  Its amazing to see how far he has come.  As any parent would be, we are so proud and excited for him.”

Fortunately, the principal at the time appreciated the value of enlightened self awareness and stepped in to make this happen. He had the most glorious time with his friends at his own party. While he was blowing out the candles on his cake, I took the instructions handed to me by the school on “intro to helicopters” and filed it away for later.

(For those of you who don’t know,there is nothing in FERPA (Family Education Privacy Act) that would actually prohibit a teacher from giving you the first and last name of any student your kid is hanging out with as long as it is directory information and there is no expressed exclusion in writing from the family, or if the child gave it on their own.  So no…its not “confidential”. This includes special education students…FERPA would prevent her from telling you that the child was receiving special education services, not from giving you their name…and I get it….I wouldn’t want my name and phone number handed out willy-nilly either…except my friend’s child with language hands hers out all the time simply because he can)

I am privileged to be self-employed and have a job that affords me the flexibility to work around my kids’ schedule and needs.  When you have a child with a disability, weekly mid-day therapy appointments, meetings and emergencies are part of the deal and already require us to be like Navy Seals.  We are flexible on a moments notice to switch gears and take care of whatever arises unexpectedly. But those 9-5 parents or single family households with special needs kids are truly super-parents….Space monkeys exploring uncharted territory  different than typical families with similar scheduling issues. They do not have a finite number of years in which they have to sweat it out every day, and they certainly don’t have an ounce more  flexibility to find time to sit glassy-eyed in an empty classroom pulling staples out of a cork board.   Volunteering for the purpose of  learning every nook and cranny and connecting with the people in my child’s world just to have a frame of reference would likely happen anyway for me but definitely not with the volume or tenacity.  I am lucky to have this as an option, but many…if not most working parents of special needs kids do not.  The onus is on the parent to try to figure out how to connect the dots to create a fulfilling world outside of school for their kid and many times they aren’t even given a pencil to do that.

So when you get that email or phone call that it is time to start collecting money for your teacher’s end-of-the-year-gift and its from the two moms of kids you never heard of (because each spend a total of 1 hour a day in the classroom), now you know why you don’t know who they are.  Reach out to them….because they don’t really have time to be collecting your money…but they will make all the time in the world to find out more about your child.

**The inspiration from this piece came about a month ago after yet another disheartening situation. A few weeks ago we had a meeting where I had to be very firm and direct to make sure this message was heard. I believe it was heard by most in the spirit it was delivered. Most of the team who work with my child have worked with him since the beginning.  Those direct workers are caring people for certain and they are working on a plan to rectify some of this type of issue.  Stay tuned…if you are in this dilemma for your child!

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