Day 2 2016: B is for Behavior

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B is for Behavior

All behavior serves one of 4 functions:

To gain attention

To escape a situation

To gain access to something (usually tangible)

or

A response to an internal stimuli such as hunger, illness or exhaustion.

Seriously.  Just 4 reasons anyone does anything.  Think about it–you won’t come up with a 5th. I have tried.

Of course, if it were that simple we would all live in harmony.  However, there are some times it gets tricky.  For instance, when a behavior is triggered by something internal, it can be incredibly difficult to identify.  So if a child with autism likes to clap his hands near his ears is it because he likes the sound?  Or is it because he likes how his hands feel when he claps them together?  Or is it because it creates a little wind near his face which he likes?  To make matters even more complicated…a behavior can change function midstream and without warning.  So that same kid who liked hearing the sound of his own clapping next to his ear and his parent rushes over to him and holds his hands and tells him “stop!  Lets play instead”….her reaction may have just inadvertently changed the function of the child’s behavior from internal reasons to external. Perhaps it becomes a great way to get his parents’ attention now too.  Such is the nature of human existence…including humans on the Autism Spectrum.  It is easy to judge others without understanding when looking at their behaviors through our own lenses.  So next time you see a child having a tantrum in public or seems out of control, bear in mind that the function of his behavior may not be attention like you might be used to from a bratty kid. He may be responding to sensory overload and needs to leave or perhaps if you hang out long enough you may come to find it may be screams of joy because he has no other way to express it.

26 Days of Autism Awareness from A to Z

Day 23In honor of Autism Awareness month in April of last year I started a project to raise my own awareness on my small little corner of Facebook by lettering each day A-Z and sharing a little bit what autism is and what autism isn’t. I have two beautiful boys both with Autism. They couldn’t be any different and while each have their unique challenges they also each have their unique strengths. Given how differently they present I thought it might be worthwhile to talk a bit about how Autism can manifest, issues facing individuals with disability and how Autism is a family systems issue.  My boys don’t just have Autism.  We are a family living with Autism.  Initially without telling too much, I shared how things might look a little behind closed doors along with a personal photo to my friends who might not otherwise get that glimpse.  But as the days in April passed and I became more comfortable with the safety of Facebook, a change took place with my friends on my page. Instead of the usual 20 or so likes I would get per post, I started getting hundreds. I also started to understand that perhaps the wrong kind of awareness exists. Friends and colleagues began to approach me to let me know just that and thanked me for my efforts. Acquaintances stopped me to ask questions. I had others quietly ask me for advice since they weren’t “out” yet with their concerns about their child.  And yet others were even apologetic telling me they wanted to help in some way.

Somewhere around “K” in the A-Z tale, my husband who is a private person changed as well.  Between the “likes” my posts were getting, the kinds of questions and comments being asked and he too was being stopped by supportive members our community he had a change of heart.  For the first time, he let me know that he was proud of us as a family and that he believed I was changing for the better through the process of writing.  I had not changed. I finally felt I had permission to be open.  The more he saw he could trust that I would still protect some of the more personal aspects of our life while still being honest, the more open and honest I could become.  The process was cathartic for both of us.  I asked my 12 year old to read and approve every post or blog pertaining to him and allowed him to be his 10 year old brother’s voice of approval as well given he does not have the voice to approve. My slow-to-warm, seemingly uninvested Aspie now looks forward to reading my writing and even asked to attend a large and lengthy public speaking engagement where I will be presenting.  Though I started with something on April 1st…26 days later I ended with something else.

April is Autism Awareness month…something that is like some weird little carrot in our world where every day is Autism Awareness Month. I erroneously thought “we don’t need any more awareness…unless you have not interacted with the world at all in the last 10 years…everyone has heard of Autism…everyone knows someone with Autism…enough already with the awareness….”. We need to DO something to help.   But as I found, most people who don’t live with Autism don’t understand it even though they thought they did.  And they certainly don’t hop on disability mom blogs to understand more. I don’t fault them for that. I would not either.  I am a mother of two beautiful boys. We live with Autism and other impairments here and apparently I was doing a wonderful job of walking through the world making it look like any other parenting…..and their differences looking like any other differences a child might have.  Though their Autism defines them about as much as their big brown eyes,  this projection makes everyone around us more comfortable but ultimately it becomes the elephant in the room.  Not just for those who want to ask questions around my silent insistence things are “just the way they are” but by letting my kids think that they are just like everyone else…when they are well aware they are not, leaving them wondering why their feelings are incongruent with the reality we try to portray.  So this year I will again start one more blog A-Z.  Its not everyone’s journey in Autism, but it is ours and it has been healing for all of us to say it out loud.

12 Times my Kid Was Way, Way Cooler Than North Carolina

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A1 got off the bus last week and immediately came to find me.  This is unusual as it is typically the other way around.

I hate riding the bus.  I try to keep my headphones on so no one will bother me….but they even make fun of that” he blathered.

A1 is not one to seek out trouble, but he has no ability to not verbally respond to it when it comes his way.  Impulsiveness and rigidity.  Such is the way of  ADHD and Asperger’s and as he gets older, he gets more and more aware of this but doesn’t seem to have the impetus to make it stop.

It wouldn’t be so bad if even one kid stuck up for me or was on my side. B was making fun that I couldn’t run all the way around the track in gym“.

He went on and on. And I nodded imagining A1 trying to explain at length why his Keens rubbed against his heels or how he was out of breath….stoking a fire that he did not know was smoldering.  I did not hear much else until the end.

“….and then B said to me ‘at least I’m not a transgender.”

I stood for another moment gathering my thoughts and wondering what A1 was thinking as I just stared at him floundering to find something to say.  I took a slow, deep breath, “and what did you say when he said that?

I told him ‘If you think I’m cute, you can just say so…..’”

Bam.

He didn’t deny it.  He didn’t admit to it.  He didn’t give the other boy the power to use that in a way that would have inadvertently bullied anyone else in earshot.  He shut that shit down.

I am sure if my child had the ability to remain quiet, he would.  However in that moment I have never been more proud of him.   He is potentially the coolest person I know and possibly not as vulnerable as he feels….and it’s not because he is 12 and has shoulder length black hair with Manic Panic lizard green tips.  He ultimately understands what it means to be transgender….to be different in a way no one gets.  He also doesn’t understand what the big deal is and why “adults can’t get over it either”.  He had several options of comebacks and told me he recognized that given the slurs thrown his way there were many cruel things he could have said but chose not to.  A1 is confused for a girl a lot.  Though we talk about it, he tells me he is not transgender nor does it bother him when people think he is a girl. He says he knows it goes with the territory of having long hair.  My Aspie tells me he is lonely, he tells me he knows people think he is weird…but he lives his life being true to himself, doing his own thing, wearing what he wants…and unapologetically giving zero f’s. And one day…when adolescence has passed him by I am certain he will come out the other side being a better person for it.

So North Carolina…in light of your clamoring last week to pass the adult equivalent bill of bus bullying LGBT people…my 12 year old with developmental issues gets it…why don’t you?  While we are at it…here are 12 other ways he is cooler than you:

  1.  He has mad Etch-a-Sketch skillz

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2.  The element of surprise

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3.  He also sets his own agenda.  But way better than you. 

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4.  Visual cues for piano practice?  He scoffs at those….

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5.  He tells it like it is.  And obviously is learning something in language arts on occasion.

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6.  He expects quality.  And he will wear it wherever he wants.

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7.  Oh.  He’ll do his homework alright…

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8.  This

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9.  Sure, he’ll write your silly story….

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10.  years and years of fashion….(not to mention his real dad is Tommy Lee)

 

11. Upper hand.

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12.  Discussed. 

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

-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 rationally know there is likely nothing in that envelope that should really cause this kind of response. But that’s the thing with phobias or irrational fears and trauma response.

Yes…I said trauma response. 

Often times prior experience attaches itself to something innocuous and we then pair our previous response with a neutral stimuli and generalize it over time. Caller ID with the school prefix, email and now apparently manila envelopes have become the manifestation of years of battles, blockades and having my already fledgling parental competency called to the carpet.

For me….my defining moment were words uttered in a meeting 7 years in….but 3 years ago:  “Its not fair for one (A2) to get more just because of your parental advocacy”  (which was agreeable…but in a whole different way given we were discussing data collection that was reportedly correct, not collected by me…and concerning). 

It is silly I suppose if you are the one who stuffed the envelope and have no knowledge of my defining moment or my other, more academically impaired child. She certainly must be wondering about the warning likely issued by the elementary school about my hypervigilance, because the experience she is having is the opposite. A parent who is late to answer emails yet bizarrely will parse apart data collection in an IEP meeting….and be spot on why it was taken incorrectly must mess with her own schema of special needs parents.   I have learned to become a very hands-off parent in hopes of preserving my own life in the last year.  I have a double-decker weekly pill case that houses my capsules of life extending medications that would impress most of the AARP crowd.  Yet I am not yet even 50.  Years of sleep deprivation and external stress can only wear so long in a genetic cesspool.

So there it sits….but not without words. It screams to me every day over the din of my responsibilities. But I am strong and I can withstand long term, unfocused wailing.

So I leave you with 3 truths….

A. I am human.

B.  I love my child more than anything I could have ever imagined.

C.  I am preparing for an uncertain future in a time that I will no longer be here to advocate in a world that does not see my child as perfect as I do.

…and there are things that get in the way of of the co-existence of Notions A, B and C.  

Sorry about the envelope.

That one time Saturday Night Live was super un-PC and it worked…

I have no idea how to work our TV, so I have to ask my children to leave it on every Saturday evening so I can watch Saturday Night Live.  I often wonder if I watch it because it is the only time I don’t have someone whining at me that it’s their turn.

Last night between forcing my eyes to stay open and shoving a handful of popcorn in my mouth, SNL aired this skit:

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The Champ: Jonah Hill is not the Winner you think he is

For those of you not completely cued in, this is satire of something that goes on in the lives of individuals with disability all the time.

Did it make you uncomfortable?

SNL nails it. 

Hear me out on this one….

About a month ago, I read the yuckiest headline ever.

UNDEFEATED WRESTLER LOSES TO RIVAL WITH SPECIAL NEEDS, MAKES HIS DREAMS COME TRUE.

You can read the article here. 

Once I moved through being perplexed why a star wrestling champion would have a dream of losing to someone with special needs I realized what it really said.  Which ultimately was equally as perplexing and somewhat disturbing.

A wrestler with special needs was given the opportunity to feel like his hard work paid off. He won against a wrestling champ…but not really and that is now NATIONAL HEADLINE NEWS.

Since this has been so fresh on my mind recently I wondered….is the problem more about selfish people who want attention for being decent human beings or is the problem more a media and journalism issue?

I pondered this just a bit last week as well when I blogged about blogged about Donna, an unsuspecting fast food worker who treated my child with a severe language disorder just like any other patron. In our case, Donna is completely unsuspecting that so many people now know and respect her because of her act. It truly was an act that occurs far less in our world than one might think.

The sensationalizing of reporting overly heroic gestures toward those with special needs is a reflection of our world.  Hollow good deeds and instantaneous 15 minutes of fame is raising the wrong kind of awareness folks, but it sure makes people feel good and it garners thousands of clicks.

Please do not misunderstand.

Us parents are caught up in a catch-22 vortex.  Watching A2 join in to a neighborhood kickball game only to see the 9 year old neighbor run just slightly slower to retrieve the ball as he runs to his base is amazing.  But he DOES run to get the ball and he has gotten A2 out sometimes. The difference is that its not a one time thing. 

A2 can be told “see you tomorrow” as an invitation to join in again.  And that 9 year old isn’t walking around to his friends saying “Wasn’t that so nice of me? Did you see what I just did?”…at least not in front of A2 or the rest of the world to be overheard. That gesture turns a regular experience into a charitable yet humiliating one.  I love the idea of having my little guy being an equal part of the game. I even love the idea of the kind gesture of a child making him feel special during that game….I don’t like the idea of him being seen as a charity or a headline because of it.

And that is all.

Thank you Saturday Night Live and Jonah Hill for showing how ridiculous that is.

Tigers Forever.

#SNL, #JonahHill

Random Acts of Dignity: The Ultimate Advocacy for My Disabled Child

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Dear Donna, Cashier at Wendy’s,

My 10 year old and I stopped in for lunch today on your shift. I could see after you asked him how he was doing today that his jumbled answer might have caught you off guard. You shifted your eyes to me and then back to him as he continued…something that happens all the time in our world. So I looked down at him and as his 24/7 speech and language coach I said “You can say, ‘I’m good!'”.

But then you caught me off guard. Instead of looking to me for his order, you asked him.

He answered you.

You leaned in and said “I think you said you want a cup of water. Is that right?”

He nodded.

“Aren’t you getting anything to eat?! What else?”

After he excitedly spit out a string of jargon you asked him to slow down and try again. So he did.

“Fuhweyes” he said.

What size?” you asked.

Mee-yum.

Great….anything else?” she asked, glancing quickly in my direction.

I shook my head as my son clearly said, “Nope!”

What you didn’t know as we held up the line is that my son has Childhood Apraxia of Speech, but the name of his disorder didn’t matter to you. What mattered to you was making sure you got his order right.

You didn’t “let” him be an equal patron at your restaurant…he just was.

You let him be his own expert.

You presumed competence. Not your version of competence, his.

You allowed him the dignity of time.

You asked him his name to put on the screen for his order just like everyone else and checked out to see if you said it right. You even asked him if he knew how to spell it for you. So he did.

Through this act I am certain you are not expecting a newspaper article or local talk show segment. You weren’t trying to be noticed or given kudos or wanting to be called a hero because you took a moment and tried a little harder. You wanted a 10 year old at your counter to order lunch just like any other 10-year-old might on a Friday afternoon.

Advocacy and inclusion are tricky things. When they come from a place of equality, empathy and understanding they are wonderful things. When it lacks authenticity, it can still have a place but can also be humiliating and damaging to an already fledgling movement. By “letting” my child be prom king, shoot the last basket in the last 10 minutes in the last game of the season, by being so kind as to “be his friend” , well meaning people are inadvertently continuing to marginalize him. No one has assumed that he was worthy of the crown on his own, able to make that basket without help or that maybe he makes one heck of an awesome friend and that perhaps HE is the kind one.

So you, Donna your authentic advocacy is the kind that will change the way we as a society deal with disability. Thank you for lunch with a side of hope.

Sincerely,
A2’s Mom

To the Regular Ed Teachers: Top 5 Ways to Keep Special Needs Parents Off Your Back

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My home phone rang the other day right before my kids got home from school. For those of you who do not know what I mean by “home phone”, its that thing that plugs into a wall and has the # symbol that cannot hashtag anything. When the home phone rings, I typically keep doing whatever I am doing unless I am feeling a bit of whimsy to torment the telemarketer likely on the other end. The only other time it rings is when someone at the school does not know to call my cell…which often then strikes fear in my heart. So I picked up.

“Mrs. ATeam?” Gulp.  It was A1’s new science teacher calling to say “First of all….let me tell you I think he is hilarious. He made this cartoon strip ….” He then went on to disclose all the other things drenched in awesomeness while I was waiting for the “Second of all….” part. That part never came. He called me to tell me I had a cool kid. And that was it.

I am already too experienced with the school system to be naive. That same morning I had to send an email to kindly remind another teacher to carefully review A1’s IEP and Health Plan as there were some important things not being followed. Coincidence to hear from the science teacher the same day? Probably not. I am guessing he may have just been reminded that he had a kid in his 4th period class who has an IEP and a Health Plan. Maybe not…but as I said, doe eyed ingenue does not work as well with crows feet.

Unfortunately, what struck me most about this amazing phone call is that in the 3 years that my younger A2 has been in public school…my very speech impaired child…I have never ONCE received a phone call from a regular ed teacher just to tell me about his day in their class. And let me be clear about 2 things. Real clear since this won’t apply to everyone.

1.   A2 tries to tell me about his day. Every day. And we CANNOT understand him.

2.   I have ASKED  for communication. Over and over. Every year. In front of other people. To almost no avail.

So teachers…this advice is completely free of charge. The key to keeping us special ed parents at bay.
1. CONTACT US FIRST: Before school even starts, call to introduce yourself and ask about our kid. Give us your contact information. Assure us you are the extra eyes and ears for a kid who has no voice.
2. DON’T ASSUME THE INTERVENTION SPECIALIST IS JUST TELLING US EVERYTHING. My kid has a whole 30-60 minutes a day of direct IS time required in his IEP in our high-end-award-winning-district. My severely learning disabled child. The paraprofessionals who are with him most of the day are not permitted to communicate with me directly due to their classified employee status. We often get second hand info from our IS that sounds something like “had a great time in music class learning new songs”. The small tidbits we do get…well…that’s all…that’s ALL we get to know. The nuances are never there for us…if they are making a new friend, if someone hurt their feelings if they thoughts something was cool or interesting. And those things are definitely happening in my child’s world and no matter how hard he may try to share those things with me, if I have no context, I will not know at all what he is telling me let alone what questions to ask. The paras also are not allowed to attend IEP meetings even at my request. Were you aware of any of that? A2’s Intervention Specialist has 10 kids who can’t tell their parents anything about their day. She is ALL of their voices….and she is trying very hard to be all knowing by being the 3rd party communicator. But why? This is a team approach. While you do have 25 kids in your room, if they are lucky and have parents who actually ask them about their day, their kids can tell them. You have so much you can tell us and I guarantee all of us want to know.
3. INVITE US IN: To volunteer, to be a fly on the wall, to talk about our kids to your class. Did you know that neither you nor any of his other caregivers during the day are allowed to divulge any information regarding our child’s diagnoses to the other children due to HIPAA**?  And there are SO many questions from children aren’t there? If you have an inclusive classroom, the information a parent can provide the children can be invaluable to the inclusive environment. Offer to include the IS to help that parent if they express interest but are uncomfortable. **IMPORTANT DISTINCTION:  FERPA (Family Educational Rights and Privacy Act) any information that is directory information is ok to give out.  So If a parent is asking for another child’s last name or to get in touch with another family, that is not confidential information if the family did not opt out of directory information.  You just can’t tell us the child is on an IEP or anything regarding diagnosis.
4. RECOGNIZE WE UNDERSTAND YOU ARE BUSY: We are not out to get you or have a “gotcha” moment. I cannot imagine being a teacher right now. Huge classloads, jobs dependent upon test scores that are dependent on more than just your ability, differentiated instruction, outliers flying under the radar, helicopter parents, uninvolved parents. A 10 minute phone call once a month to tell us something we wouldn’t know without your call. If you do that once a month without fail you will likely never hear from us. But your principal will almost definitely hear from us. To hear how awesome you are.
5. INCLUSION AND INTEGRATION ARE DIFFERENT: This doesn’t mean let them also have a desk and have peers help them hang up their backpacks (though we recognize the value in that too). I mean if you take a picture of our kids to put on a bulletin board make sure it is a good one like everyone else. If you are in reading to the class and you ask a question the other kids can answer, figure out a way to ask a question that could include our kids’ ability to answer. While you have kids who can fall through the cracks, ours have absolutely no way to mountain climb out of those crevices without you. I am sure like us you don’t want them just to be a warm body at another desk. Ask their IS for strategies…that is why they are there.

BONUS #6 also at no charge: THE MOST DIFFICULT PARENTS ARE LIKELY YOUR BIGGEST ALLIES: Yep. We are the wave makers, the getter-doners. We figure out what you want and need and we try to get it for you especially if it will benefit our kids. Sometimes you don’t even need to tell us what that is. We figure it out. Assume nothing regarding our motivations.

For those of you who went into regular education vs. special education–those days are long gone. Inclusion is not just the responsibility of your Intervention Specialists. Much like us parents of kids with special needs…we started out in the exact same place as all the other parents in your room. Maybe even as you did too as a parent. Our journey veered off years ago but the desire to get to know the same thing we would have if everything turned out as expected has not.

Autism Awareness Month: Y is for Youth

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The sticky wicket of Autism. There are some moments I feel particularly lucky for autism. Those moments I watch slip away from my friends who’s babes with bountiful curls framing cherub faces ask for the straightening iron ……who have their gossamer wings clipped to keep their feet firmly planted on the ground….who no longer rub the wonder of dreams deeper into their eyes when they are sleepy….I would imagine it’s the bittersweet joy of having children…watching the transformation from innocent Angels to inhabitors of earth. I get to cavort with an angel for longer. I still get to hear a gasp followed by “look mommy…moon!”. I still get warm snuggly visits at 3AM. Bubbles are still magical. Raffi is still the only fully grown man who can sing wheels on the bus and get a rousing sing a long at our breakfast table. A2 can still do interpretive dance in the aisle at the synagogue during prayer while onlookers smile and nod as if it is part of the service. But it’s not for much longer….as those other children blossom from midlings to Ivy League applicants….A2 will likely still ask for The Muppets or try to squeeze himself onto a tricycle or squeal “go faster daddy!” as he coasts down a hill on a tandem bike….the promise of youth in the body of an adult where looks from strangers will fade from smiles when asked “what’s your name”. It’s not natural to pray you outlive your child….but we both agree as long as there are songs to be sung, dances to be danced and bubbles to blown we will move with him and try to always see the wonder of his world.

Autism Awareness Month. X is for X-Ray.

Day 24

Sensory differences are a common symptom of autism. Often kids on the spectrum can become overwhelmed by these differences. A1 tells me that a public toilet flushing sounds like a bomb going off and for several years he avoided public restrooms. A2 flaps his arms and locks out his knees whenever he is filled with anxiety….kind of his virtual rocking chair….or else he is just hoping to fly away from the dentist/barking dog/hand dryer. As autism-folk we try to build awareness by creating overwhelming scenarios to get NTs (neurotypicals…yes, we have a name for you) to sympathize the plight of the kid flicking his fingers in front of his face as a way to stop having his eyes taking a million pictures at once or the kid who is pacing because he can’t tell where his body is in space. But sometimes, I am fairly certain that some of those sensory integration differences are not experienced in a negative way and sometimes there are common things that just look, sound or feel like something not of this world…..if I could only take an x-ray of A2s little mind and see what he could for 10 seconds….. (…and feel free to smile at this picture….)

Autism Awareness Month. T is for Teachers and Therapists.

Day 20

 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.  When reading this post today–please help me help a few whose lives are difficult right now–Debbie Jo Pierce (pictured above) was one of the first paraprofessionals to work with A2. She has given most of her life to helping others and is ill with cancer leaving her unable to work and without income. Please consider today to donate to a Gofundme account started for her to help ease her burdens. Also, if you are of the praying sort, please like the FB page for Pray for Rachel. Lauren Sullivan, a favorite home team therapist of A2 15 year old sister Rachel is in Nationwide Children’s Hospital being treated for cancer. Rachel is her heart and soul –a child of strength and character. I am only one person–Christmas gifts and thank yous always seem so trite in the face of what we ask of the professionals who help us. Can you help make an impact for 2 of them today?

**This post has been updated since the original post  in April 2015, Debbie Jo passed away..taken too early in this world, yet someone must have felt her job here was done….and what a job she did in a quiet world where her time impacted so many.  Rachel Sullivan has made a full recovery and is enjoying school, family, sports and her community.