Josey

I know I just thanked her for helping me, but I had to post this too.

Josey is my amazingly sweet girl.  When going to the junior high, she was all excited to get to do partners club which is a group where students with and without disabilities socialize together.   I asked her, "Don't you get enough autism at home?"  She looked at me like I had 3 heads.  In Josey world, there is no "inclusion" because exclusion never occurs to her.

My favorite Sam and Josey story happened when they were still itty bitty.  Sam had that OCD thing where he could not tolerate the credits on movies.  Back then, he was a little more "physical" in his requests.  He had pushed Josey several times that day alone.  She was much smaller, so I really had to keep an eye on them.  Josey was watching a show.  Apparently she had taken all the bullying she was going to from Sam that morning.  When he moved toward the T.V. to turn it off, she flew across the room, pummeled him in the chest, sent him flying and stood with her hands on her hips while she yelled, "Sammy! You NOT turn off  my T.V. show!"  He has done whatever she tells him ever since.

Sam had a project due today.  It was a poster presentation on an element from the periodic table.  It was actually kind of labor intensive.  Josey was a huge help.  She got him to work for almost an hour.  Sam was very excited to take the poster to school.  His teacher sent home a note saying that Sam was really proud of himself after he gave the entire presentation.  That is kind of amazing for a nonverbal kid with autism who use to hate being around people.

Thank you Josey for helping Sam with his project.

Gale

Max started his first job on Saturday.  Right before drop off, I got a text from Gale.  She gave me a whole list of things not to worry about.  Sunday, she happened to be at his new employer because of her husband's employer.  Of course, she checked in on him and let me know things were good.  It's so nice to have the stalking, hovering experience without having to leave the comfort of my own home.

Thank you Gale fore watching out for my baby and telling me not to worry because it would all turn out ok.  You were right....it did.

Fr. Graham

We go to a very large Catholic church.  We use to be very regular attendees on Sundays at 9am for over ten years.  Life being what it is, we somewhat abruptly changed to the Saturday evening Mass.  Because our parish is so big, we have several assisting priests that handle various Masses.  One of them is Fr. Graham.  I hadn't realized that he typically doesn't do the Saturday Mass until just this week.  This was a week he happened to do the 4:30 Mass. 

Fr. Graham has always been particularly kind to and about Sam, including those times when Sam took making "a joyful noise unto the Lord" to a whole new level.  Matt, Josey, Sam and I made a point to say hello after Mass.  When he greeted us, he said he was so glad to see we were still coming to church and doing well.  It was just so nice to feel appreciated. 

Fr. Graham, it was so nice to see you again.  Thank you for making us feel missed!

Matt

I bought myself an iPad mini to use at work a few weeks ago.  I decided that I had spent enough of my money in colored ink, lamination and Velcro to justify buying an iPad to replace a zillion little boardmaker pictures. I found a really nice free app that lets me make my own simple talking communication boards.   I also found some great apps and stimulus photos for various kinds of therapy activities.  Matt asked how I liked my new mini.  I said I loved it, but in a perfect world, I would have a mini and a full sized iPad. Matt asked why. I told him that for some kids, I need one for targets, like the picture we are describing, and one with the choice board or visual supports to complete the activity.  Today, Matt said he had a present for me.  I was thrilled with my new fancy earbuds that are designed to stay in your ears when you are working out.  Then he handed me another box.  It was a 64 GB iPad.  I was so excited, of course I posted on Facebook!  Somebody asked why he bought it for me.  I asked him how I should respond and he said, "Because I believe in what you are doing and want to support that.  And I love you."

Thank you Matt for making my world perfectly wonderful.....long before you gave me the iPad.

Josey

I have a few events coming up this summer.  Couldn't resist an online bargain for a super cute sundress at a super great price.  In fact, the sale was so good I picked up a shirt and shorts too.  They came today.  I tried on the dress first.  Big thumbs up from Josey.  Tried on the shirt next.  Josey told me I could borrow her tank top for under it.  That was a subtle way of saying it was "no way!"  That shirt is going back.

Thank you Josey for your fashion advice.  You have saved us all from the humiliation of inappropriate mom wear.

Annie

Annie is one of the teachers in my building this year.  She is young and enthusiastic.  I'm refraining from using the word perky.  Crap!  I used it.  Well she is. She is also cute as button and I'm old enough to say things like that so DEAL!  Basically, she is the quintessential elementary school teacher.  Even though it is not directly her job, she has worked to build her students' reading fluency because they needed it.  She championed the school garden.  She spends her lunch time eating with students at a picnic table in the garden.  Basically, she has that sunny save the world attitude that everyone working in the schools should have.  Here is a very specific example. 

One of the teachers, whom you will likely read about in the near future, has a student who is going on a corporate field trip.  The deal is, you dress business or you stay home.  This young man has school uniforms and casual clothes.  He was very disheartened by the idea that he may not be able to participate.  His teacher very casually mentioned that he was going to buy something appropriate for the student to wear and Annie immediately opened her wallet and donated $20 to the cause.  She wasn't asked.  It wasn't even implied.  The student is not now, nor has he ever been on her caseload.  She did it because she said it was worth giving up 2 pizzas so he could have a tie.  She would feel better and so would her husband.  Quite honestly, there are not enough Annie's in our schools. 

Annie, thank you for being such a good example to our students and staff. 

David D

I'm sure that you have heard about Autism Speaks, The Autism Society and about a million other groups and organizations that offer support.  When Sam was first diagnosed, I remember the doctor saying I should join one of these groups...to find support.  I did join one.  I don't think I ever went to a meeting.  We have never been to a sensory Saturday movie or Santa's "special" workshop.  But I did find support.  I found it in the waiting rooms of speech clinics, at my local pool and even in Kroger's.  I'm not sure I believe that 1 in 88 is an accurate reflection of autism, but I do know there are a lot of us out there. Jumping, flapping, melting down, and stimming throughout communities across the country.  The wiser and more experienced parents reach back to pull the fledgelings along.  The fledgelings gain strength and build determination until they are ready to reach back for someone themselves. 

I have been very fortunate to meet many amazing and knowledgeable people because of Sam and his autism.  That is a good thing.  It is a very good thing about my child having autism.  I know it sounds strange to say there is anything good about my child having autism, but there is.

Today, I was in Kroger's and saw one of many families I know because of autism.  David's son is older than mine.  He and his wife are really wonderful people.  If for no other reason than the fact that they are still married.  Something that I find quite amazing.  Their story is longer than just a son with autism, which I won't get into.  I am so impressed with their dedication to their children and their equitable division of responsibility.  If you asked me to come up with 3 words to describe what I see each time I run into them in any combination, I would say balance, love and acceptance.  I think I have learned more from families like theirs than I ever could have from sitting in a formal support meeting. 

David, thank you for talking to me tonight about adult services.  It was really nice to hear your perspective on that next step. 

Teri

I may just spend the next month and a half thanking anybody who acts surprised when I say how old I am.  Notice I said "acts."  I really don't care if it's genuine or not.

Teri, thank you for saying I don't look 43.

Lynne

Last night, I slept like a baby.  Nothing may come of it, but I appreciate the heads up just the same. 

My Mom

Two pages, huh?  Well....Ok!  This is the mother of all thank yous for the mother of someone full of thankfulness.

I'm going to share a few of my favorite mom and Sam stories, because it is still autism awareness month.  Sam has really done his part to make people aware of autism and I think that needs to be acknowledged.  I also think tonight is a good time to share "Sam's Adventures with Grandma."

Josey was going off to her first year of pre-school the same year Sam was starting kindergarten.  In preparation of a bright new school year (that actually turned out to be a disaster) we went on a great big Mall kind of back to school shopping spree.  Who doesn't love new pencils and new shoes to start their new school year?  I'll tell you who...a five year old with severe autism.  Sam made his displeasure clear by throwing a bit of a hissy fit.  My mom didn't want the other two kids to miss out, so she said "You go on, I'll take care of Sam."  So off mom and Sam marched down toward the food court and Max, Josey and I dove into school clothes heaven.  Also known as the GAP.  It was so crowded, it took a little longer than I expected.  As soon as we stepped out of the store, I could hear Sam....who was ten stores away and in rare form.

My mom can do the mom glare like nobody's business.  She is the Chuck Norris of the mom look.  When I reached her, she had the look.  My first response was to revert to that five year old explanation voice that is two octaves higher and 30 words per second faster than my normal voice.  My mom cut my apology off and said, "It's ok.  You stay here, I need to go have a talk with somebody."  Relief washed over me, just as it did when I was little when I realized I was not going to be the recipient of her wrath.  And just as I delighted in watching my siblings get it when I was little, I sat back and watched the show.

My mom marched into Things Remembered.  I was too far away to hear a word, but the expression on the managers face made it clear that even she could see, my mom was about to verbally take her out.  My mom is most fierce when she is not yelling.  Let me tell you friend....SHE....WAS....FIERCE.  The woman behind the counter was about 5'7" and 200 pounds.  I watched her shrivel to 4 feet 98 pounds as my mom dressed her down in an even tempered voice so cold, the cash register was dripping with ice.  At one point, the woman fruitlessly tried to defend herself, my mom made a cutting gesture in the air with her hand to make it clear, she was having none of it.  The woman shut her mouth immediately.  Mom got the last word.  I'm sure that woman will never call security to complain about a child with autism, or any other child for that matter, ever...EVER, again!

Anybody who has seen my wrath when I'm protecting my babies....I came by it honest.

My next favorite story took place when Sam was getting his service dog.  I actually have two.  In the first story, we had rented a 2 bedroom suite.  Mom had one room, Sam and I the other.  There was a living room between the two.  I had popped down to the office to get a snack for us.  When mom went into the bedroom to check on Sam, he was gone.  Panicked, my mom raced to her room.  She was just about to call for help when she realized that Sam was in the living room sitting on John Boy.  Relief turned to back to panic when she realized that John Boy was not moving.  She was sure Sam had killed his service dog in the first 3 days.  Then a dog barked on TV and John Boy flopped his tail in that way he does without ever moving another muscle of his body.  My mom said "Hallelujah, it's the resurrection again!"  Then she asked if they had Manhatten's down at the office.

In the second story, we went to Max and Erma's for dinner one night.  The waitress was trying to be helpful and brought Sam's meal ASAP.  The problem was that as soon as Sam was finished, he was ready to go.  Our food hadn't arrived yet.  Sam figured that was our problem and threw a fit (are you seeing a theme here?)  Well, the people at the table behind us were not very nice about the entire thing.  Which, I can understand to a certain degree.  But I did give up my dinner and take Sam out when quieting and bribing didn't work.  That couple was very mean about the entire thing.  They kept commenting and looking, saying things like, "Can you believe that someone would bring a child like that in here?  Does she think we want to listen to that?  What is she thinking?" I took Sam out (surprise, surprise, I was in tears) but told the rest of my party to stay.  My mom was none to pleased with the continued commentary from the peanut gallery upon our departure.  So when they got up to get their ice cream, my mom actually said, "Look at that lady?  Can you believe she would be that fat and still get up for ice cream?  And that man!!!  Why he has no legs!!!  Doesn't he know people don't want to see that?"  I love my mom.

When I told my mom that my husband had moved out and we were divorcing, she said to me, "Why does Kenny Rogers You Picked a Fine Time to Leave me Lucille keep running through my head?"  My mom has a wicked sense of humor.

When some people get divorced, they lay in bed crying for months.  Some rage and break things.  Me?  I took the kids and my mom to Disney.  Grandma and Sam have quite the adventures in hotels.  They stayed behind one night so Josey and Max could have an opportunity to shop for souvenirs.  When I got back, mom asked me to check on Sam.  When I did, I noticed he had horrible purple dotted marks all over his face.  Mom was concerned.  Being the rational individual I am, I freaked out because I was sure that he had acquired a flesh eating virus in the 2 hours I had left them alone.  The next day the marks were worse..but they also made it clear what had happened.  Sam had picked up one of the glass tumblers and sucked in through his mouth to create a vacuum that held it to his face.  Basically, he gave himself a giant face hickey.  It lasted for days.  Mom found that hysterically funny too.

Why am I rambling on with random Grandma and Sam stories?  Because tonight was another one of those nights.

A few years ago, one of my oldest and dearest friends was bitten by a brown recluse spider.  It went undetected for some time and wreaked havoc on her health.  She was hospitalized several times, lost kidney function at one point and all kinds of other really awful, yucky things.  So tonight, when I noticed a red, puss filled mark on Sam's arm with an indent like a hole in the middle, of course I thought the worst.  I called mom for a second opinion and she came over because that is the kind of mom she is.  We decided it was just a pimple, but a pimple that had to go.  Mom decided to "express" it....and when that sucker blew...it shot out and landed right on Grandma.  Who immediately said, "Carol Ann, I better get a two page thank you for this one!"  Mom, I could write 200 pages and it would never be enough!

I have said it before and I will say it many, many times again....thank you mom!

Jill

Hard to believe this picture was taken two years ago.  For two years, I spent more time with these lovely ladies than I did my children.  At least it felt that way.  But graduations happen, life goes on and you lose touch.  Tonight, thanks to Jill, I had the chance to catch up and talk shop with two of them.  I also learned that I am so way behind the times because I Facebook, but don't twitter.  That is the real reason I needed to catch up.  Because without my young hipster friends, I would be wearing mom jeans, keeping in touch with a land line!  Thank you Jill for arranging dinner tonight.  We always say "we should" but I'm glad this time we really did.

Kelee

Every girl needs a girlfriend she can cry with, she can gossip with and she can giggle like a fool with.  Kelee, thank you for being a giggling fool with me for THIRTY YEARS!!!!!

Adolfo

Today, I was talking about my kids...which is something I do CONSTANTLY because they are such amazing little people.  Except that they are no longer "little" people.  Two of them are full sized people with the years to match.  Chronologically, my oldest will be an adult this summer.  I said that today and Senor N, told me he never would have guessed.  He is 36.  He told me he thought I was younger than he is.  That was likely hyperbole.  He probably just meant he didn't think I was FORTY-TWO (and 3/4.)  But even if he thought I was forty instead of forty-two, it's still a big fat compliment in my book!

Adolfo....thank you for making a point of telling me you were surprised, that really, I'm pretty stinking old!!!!

Josey

Short and sweet.  That describes my daughter AND today's post.

Josey, thank you for doing the dishes tonight.

Matt

Five years ago today, I had plans to meet a man from Missouri.  When I got up that morning, I wasn't sure I was actually going to follow through.  I'm kind of glad I did. 

Matt, thanks for driving over 5 hours in the middle of the week so you could spend time with me on our anniversary.  I look forward to the day you aren't more than 5 minutes away.  Love you....always.

Sarah V

I'm kind of glad that I decided NOT to put people's last names.  Sarah has a really long one I still can't spell. 

Not a lot of detail to go along with this one because I try very hard not to be snarky.  So I will tell this story instead:

The Little Dutch Boy

by Peter Miller

 http://www.pantheon.org/articles/l/little_dutch_boy.html

 

Dutch legend has it that there was once a small boy who upon passing a dyke on his way to school noticed a slight leak as the sea trickled in through a small hole. Knowing that he would be in trouble if he were to be late for school, the boy poked his finger into the hole and so stemmed the flow of water. Some time later a passerby saw him and went to get help. This came in the form of other men who were able to effect repairs on the dyke and seal up the leak. 

This story is told to children to teach them that if they act quickly and in time, even they with their limited strength and resources can avert disasters. The fact that the Little Dutch Boy used his finger to stop the flow of water, is used as an illustration of self-sacrifice. The physical lesson is also taught: a small trickle of water soon becomes a stream and the stream a torrent and the torrent a flood sweeping all before it, Dyke material, roadways and cars, and even railway tracks and bridges and whole trains.

________________________

My mom read this story to me when I was little.  I remember it being all about the boy.  He was the hero.  Now that I'm an adult, I know that kid would have been screwed about ten different ways if somebody hadn't wandered along and helped.

Sarah, thanks for wandering along.  My fingers aren't that big.

Amy M

Autism is described as a being a disorder that significantly impairs social interactions.  When I first heard that, I thought they were talking about the child.  What I didn't realize is that autism is a disorder that will significantly impair social interactions of the parent as well.  Why?  Because the first time your child breaks all the nick knacks in somebody's house for additional "sensory" input is pretty much the last time you will be invited over.  Even when you are, it can be difficult to feign interest (as opposed to jealousy induced loathing) when everyone else is talking about the challenges of choosing between double accelerated 1st grade calculus and quadruple accelerated 1st grade trigonometry.  At those times, you gotta have your autism peeps at your side.  Sometimes, they are the only ones who get it.

Amy is one of those people that when life hands her lemons....she squeezes the hell out of them and throws them in the jerk's face who ruined her day in the first place.  And she can make you laugh about it too.  She is one of those people that makes you think, "Why doesn't she write a book or start her own website?"

Amy, thanks for always having something to say that makes me LMAO.

Max

Over a week ago, there was an "issue" with Max's homework.  Not really important what it was, just that I was angry and screen time was taken away.  Taken away for 3 weeks.  In teenager time, that equals 10 years.  Tonight, my mom stayed with Sam so that I could go out to dinner with Matt.  When I got home she said that Max had been very helpful by getting things out of the garage and helping to keep Sam moving through his nighttime routine.  Mom was so appreciative, that she told Max he could have screen time back.  He said no.  He was grounded and that was the rule.  Max is a good, good boy.

Thank you Max for being so helpful to your grandmother and being so respectful of your mom.

Teresa & David

I have been in Blockbuster several weekends and seen a gentleman with down syndrome getting movies with somebody who was obviously his caregiver.  I have also seen them in a few other locations around our small town.  As Sam gets older I find myself checking these people out, trying to decide if the people are nice or not, which agency employs them....that kind of thing.  This guy is really good with, and to, his client.  Very kind.  Very patient.  Today, I was filling my tank with gas when lo and behold that gentleman and his client were in the car next to me.  Feeling it was kismet, I introduced myself, explained my situation, said I was interested in finding out who he worked for and if he might be interested in working with Sam.  I also apologized for seeming so nosy and staring at them when they were out.  He gave me all the information I asked for and then said it was ok that I was staring, but he had hoped I was staring because I was interested in going out with him.  He said I should call the agency if I needed help with Sam and keep him in mind as a backup plan if things didn't work out with Matt.  Made me blush ten shades of red and feel embarrassed and flattered all at once.  Mom said I am not allowed to use Sam as "man bait."  Josey asked, "Did you tell Matt?"  When I said no, she said, "Well I wouldn't" in a total teenager-of-a-lame-mom tone.  Max just shook his head in disbelief.  This all has absolutely nothing to do with today's thank you.  I am only telling the story because 1) EGO BOOST!  2) I am not giving details about today's thank you and didn't want you to feel gypped by a short entry after several days of long ones.   3) I'm hoping you don't recognize there is no autism awareness link.   I would hate for you to think I got lazy because it's Friday.

Thank you Teresa and David.  Mostly Teresa because it was her handwriting and because she has no genetic obligation.

Mr. Rob M

"Love re-living in story all the exciting adventures of you and Sam, but I just can’t wait for my favorite hero, when oh when is  the fabulous MR. ROB going to appear (still wish we could have brought him home!!!!!!)"

This was the e-mail I received from my mom this morning.  Sometimes, I wonder if she would have traded me for Rob......Remember when I talked about the summer Sam did intense services?  (It was yesterday.  Go look.  I'll wait......ready?  Ok.)  Rena was the supervisor, Rob was the one who did the work.  

Rob moved here from New York.  I'm going to tell you this about him, because it will make you realize what  a really good person he is.  Rob started out working in group homes.  He was supposed to take the residents to a ball game.  It was one of a very few outings.  It was cancelled because of funding.  He said that was it for him.  Those people had lives and it wasn't fair and he didn't want to do it anymore.  Two things:  One, I'm lucky that there are Robs out there in the world who say what's wrong with the way we treat adults with disabilities.  Two, I'm lucky that he left so that he could start working with Sam when Sam was just a little guy. After several weeks, Rob told me Sam was his first little guy.  I would never have guessed that.

The first session, Rob set the expectation that Sam would work.  Sam was none to pleased about that entire prospect.  By the time he met  Rob, he had pretty much figured out that being a kid with autism was kind of a sweet deal.  You aren't encumbered by things like rules, asking for things, or waiting.  You want, you get.  If you don't get, you throw a fit.  Then you get.  Work and responsibility were so not a part of the protocol.  Much to Sam's chagrin, Rob was not a board with how Sam operated.  By the end of the first session, Sam threw such a major hissy fit over being asked to *gasp!* sit down, that it took three adults to get Sam back on track.  He was back on track by the time the session ended.  Rob always ended the sessions when Sam was compliant.  Lesson learned.

When Sam started with Rob, he had just received his first dynamic screen communication device.  Rob was instrumental in teaching him how to use it.  I learned things from watching him that I use professionally today.  By the end of the summer, Sam had made tons of progress.  Over the next year or so, Rob taught me how to do what he did.  He is one of many people who made Sam and I who we are today.

Rob, thanks for sticking it out with Sam.  My mom still loves you and wants to adopt you!

Rena S.B.

Mondays child is fair of face,
Tuesdays child is full of grace,
Wednesdays child is full of woe,
Thursdays child has far to go,
Fridays child is loving and giving,
Saturdays child works hard for his living,
And the child that is born on the Sabbath day
Is bonny and blithe, and good and gay

I looked up his birth date.  Sam was born on a Thursday.  But looking at him now, I see nothing but Sunday!

Another autism awareness month thank you. 

I have been interviewed many times by students in various educational and medical fields about being a parent of a child with autism.  For some reason, professors always make them ask a really stupid question about diagnosis.  It's usually something like "What changed after Sam was diagnosed with autism?"  After I roll my eyes, I say something like, "On Monday, Sam wasn't talking.  He was throwing tantrums, tearing  my house apart, and making it difficult to go anywhere.  On Tuesday we got the official diagnosis.  Wednesday, Sam wasn't talking.  He was throwing tantrums, tearing my house apart, and making it difficult to go anywhere."  I say this because I want people to understand the label didn't change Sam the way a car accident or diagnosis of brain tumor changes things.  It isn't a normal life Monday, and an autism life Wednesday.  It's simply a confirmation that things ain't easy and that's not changing any time soon.  But changes do happen.  I know autism changed me. 

The change was not immediate.  Somebody called me Superwoman once because of Sam.  There have been days I felt like I needed super powers to raise a child with autism.  But the transformation from parent of a neurotypical child to parent of a child with autism isn't like being bitten by an atomic spider.  One day you are a normal human, the next you turn into a green monster that can rip off people's heads if they mistreat your child.  It is more like reincarnation.  You were something.  You die.  You come back to life.  If you are lucky, you come back better (Oh, How I wish I could add Kelly Clarkson's Stronger here as background music.  I know!  Run get your iPod and play it while you read.  I'll wait.  Ready?  Yippee skippy!)

Just as babies need to develop the skills they need to navigate the world, the parent of the "newly diagnosed" needs  to develop the skills he or she will need to navigate the world of autism.  Which brings me to Rena.

I told you about the fabulous Melissa a few days ago.  You have also read about amazing Dr. Kim K-G.  Before the two of them, there was Rena.  She was my, and Sam's, first exposure to DTT (discrete trial training) and ABA (Applied Behavior Analysis.)  When Sam was in kindergarten, I knew he had major potential.  I also knew that I was the only one who believed that.  I argued with Sam's school because I felt that they were not doing enough.  Over the summer I drove to the other side of the city several days a week so Sam could receive intense services.  The first time he went, he pitched a MAJOR fit.  Like the kind that required three adults to intercede.  The irony of autism is that "low muscle tone" does not necessarily equal weakness.  Rena was monitoring the session and ran to help.  My first lesson, "there is someone besides me who is capable of managing Sam." 

My next lesson?  I learned that I was right and Sam was capable of making progress at a faster rate than what his teachers said.  I learned how to better respond to Sam eloping.  Eloping is a fancy schmancy autism word that means anything from running away to dropping on the floor.  Oh, yeah, I learned fancy schmancy autism words like "elopement."

But the very best thing I learned in the entire world that was the deal breaker for Sam?  I learned about data driven decisions.  I know.  You wanted something moving that would make you cry.  Sorry.  But that is what she taught me.

It happened at one of the last sessions of the summer.  I brought the school's proposed IEP.  It had turned "unpleasant" by that time and I wasn't sure if I should accept what they proposed or not.  I didn't understand the IEP process or know how to decide what Sam could do.  I asked Rena to look over it for me.  Instead, she went over it with me.  She explained the importance of getting a good baseline.  She explained objective measures.  Now I know that she was modeling and scaffolding so that in round two, I would know if the IEP goals were right for Sam or not.  It was confidence building.  Like the first time a toddler lets go of the couch to cross the room.  For the first time, I felt like I could do it.  I could raise this boy I loved dearly who just happened to have autism.  So maybe that was the day the change took place.  I guess that makes Rena atomic.

She stuck it out with us until the end of first grade.  Rena attended meetings and guided staff.  That was important because they were not too sure about me by that time.  I mean it took all the way until the Avengers movie before we knew the Hulk really had a good heart, right?  When all was said and done, I understood my child and how to help him.  And that, my friends, is reincarnation into a higher level being. 

Thank you Rena for being atomic so that I could transform into the parent Sam needed me to be.  Without you, I don't know that I could have helped get Sam from Thursday to Sunday.

Sandy

Back to the autism thank yous.....

When your child had autism, anything you go to do is a little more tricky.  Even going to church.  Jesus may have said, "Suffer the little children unto me...." but there are quite a few people who would prefer we suffer with our kids at home.  I remember when I signed Sam up for our church's children's liturgy program I was very nervous.  I approached the woman who was running it and explained a million things in a single breath about autism and my baby.  At the end of my ten minute ramble I asked her if she worked at our local children's hospital.  She informed me that she was in charge of the speech pathology department that specialized in developmental disorders.  At which point I asked, "So do you think you'll be ok with Sam?"  She was generous enough to respond with a very patient "yes" as opposed to a whack on the back of my head.

About that same time, Sam qualified for a county program that allowed me to take him to speech therapy.  I had no idea that autism was a specialized field.  I had no idea that speech therapists needed to have special qualifications to be in the field.  I started to figure it out when the first person I took him to said that she didn't use pictures, she just taught the kids to talk.  I thought to myself, "If it's that easy, why isn't there a line out your door?"  I also didn't like that she needed to wipe the powdered donuts off her face.  I'm just funny that way.  Since I had no idea how to find a speech pathologist, and Sandy seemed to know a lot of them, I asked her, "Can you recommend somebody for me?"  Looking back, I think she was worried about us wandering the streets in search of speech services because she hooked me up immediately with somebody she just hired.  Flash forward, that is what led to Sam getting his dynamic screen communication device.  Which is one "thank you."

Sandy took Sam under her wing at church too.  He was fully included during the liturgy program.  When he was ready, she was a key player in helping us navigate Sam making his first communion ( Click here) which is another big "thank you."

As if that weren't enough....when life's little surprises required me to decide toot sweet what I wanted to be when I grew up, Sandy was very supportive.  Twenty years ago, when I was an undergrad, I majored in fun.  I have the grades to prove it too.  Speech language pathology is a competitive field.  Undergrad programs may have 50 students.  The school may not have a graduate program at all or may take significantly fewer grad students than they do undergrad students.  Surprisingly, "You can trust me now, I drive a minivan" is not enough to get an acceptance letter.  You have to back it up with some updated grades, a good GRE score, and solid letters of recommendation.  Can you guess why I have to say "thank you" again?

The reality is that sometimes, one person can have a tremendous impact on your life in a million ways you never expected.  Sandy, thank you for helping me find Sam's first knowledgeable speech pathologist, thank you for helping him get his voice (twice!), thank you for helping me find my inner speechie side, thank you for encouraging me to apply to grad school, thank you for a letter that I'm sure helped me get into school, and thank you for the million things that you have done over the years for me that I couldn't even get to because this post is already so long! 

Stacey

Stacey is another grad school buddy.  She was actually in my "leveling" courses before we were both accepted.  And Stacey use to work for the Girl Scouts....so you know she is way awesome!

Stacey, thanks for your tip.  Got an e-mail today!

Christina

Autism break, because, surprisingly enough....there is more to my life than autism.

Christina was a classmate of mine in grad school.  She is MUCH younger than I am.  In fact, when she and the other girls were talking about the year they were born, I had to point out that any one of them could have been my prom night baby!  Anyhoo- she was a frequent partner for projects and just a really great girl.  She is one of those people who just has a perpetually sunny personality.  Recently, she gave me a little tip which may really pay off. 

Thanks for the info Christina!

Dr. Kimberly K-G.

Autism thank you número tres......

There is a whole generation of top notch professionals at our local autism center who "grew up" with Sam. The first time he did an intense therapy session (ABA/discrete trial training) his behavior therapist was brand new and there were 3 different PhDs in various levels of "officialness."  One of the entourage from those early days was Dr. K.   Although she did an excellent job when she worked directly with Sam, it was something she did later that leads me to this thank you.

I'm sure there is lots you have heard about autism.  Some things may be true, like the difficulties with language and social interactions. Other things may be misleading and untrue, like that individuals with autism are incapable of showing affection.  One thing you may not know, or understand the implication of, is that many children with autism have feeding issues.  You may be thinking that means they can't chew and swallow (our fancy speechie word for that is dysphagia.)  What it usually means is that they have a very limited number of things they will eat and they eat those few things under certain conditions.  What's the big deal? Nothing if you live in a hunting and gathering society where everything is grab what you like and go.  But if you live in a society that intertwines eating with socializing, autism is a double whammy.

Stop and think about any major holiday you celebrate for a moment.  What comes to mind?  Well, Thanksgiving has it's turkey.  Hanukkah has it's latkes.  Remember the Who's and their Christmas roast beast?  Before you watch the Fourth of July fireworks, what do you do?  Stuff yourself with hotdogs and potato salad.  Every gathering brings us together to share a meal.  Unless your child has autism.  Then you spend your holiday not sharing a meal with loved ones.  Actually, you never eat a meal as a family.  Ever.  It also limits your choices in eating out.  You can either go to McDonalds or hope you aren't asked to leave someplace that isn't McDonald's because you brought McDonald's with you.

Which brings me to Dr. K.  During an Autism Society conference, I wandered into a presentation she was giving about how to get kids with autism to increase the variety of their diet.  She said, start with something they eat, like fries, and change it by small degrees until it's a new food, like a baked potato.  She also said to pair undesirable foods with desirable, again, using small steps.  First, they just let it stay on the plate.  Then they put it on their fork.  Eventually, the expectation is they will eat it.  Yes.  It was a very slow process.  But like I said, we are a society that revolves around food.  Not eating, whether from stroke or autism, can be a HUGE social barrier not only for the individual, but for the entire family.

When I started, Sam ate McDonalds chicken nuggets,  eggs, salami, pizza, and grapes.  He was deselecting every day.  There was not one vegetable he could tolerate.  It took many years, lots of gagging, and occasionally cleaning up vomit during dinner, but we did it. 

See this happy boy with this turkey at school?  Know why he's happy?  Because he is thinking about that giant turkey leg he knows is 350 degrees and 3 hours away.  My boy who gagged to the point of projectile vomiting over having to touch a lettuce leaf to his lips now asks for his dinner salad.  In fact, if Josey doesn't eat her salad, he will steal it too.  We can now go to any restaurant and find something that Sam will happily eat.  It has increased my grocery bill, but is well worth it.

The best part is that Sam sat and enjoyed sharing the big 3 holiday meals this year:  Thanksgiving, Christmas and Easter.  He even commented on the Thanksgiving dinner by saying "Mmm, good" to my cousin, unsolicited.  You the reader may not think that's a big deal, but Dr. K-G...you so know what that means to me. 

For a long time after I heard Dr. K-G speak, I would send an e-mail to say "guess what he tried last night?!?!"  I realized tonight that I have no more "guess what" stories because now...what he tries is no longer a big deal.  Sam eats like any other kiddo.  No more fighting and crying about eating at the dinner table.  He no longer fights, so I no longer cry.  Never thought I would see the day.

Dr. K, thank you for some very good advice about how to get my kid to eat.  It has not only improved his health, it has also expanded his social circle and decreased the social isolation that can envelop an entire family. 

Jen

June is a big month for me.  It marks my birthday, the anniversary of my divorce and the anniversary of my graduation.  In people years, I will be 43.  In single people years, 5.  In SLP years, I will be 2.  I'm sharing that so you understand that when I say "when I grow up I want to be just like Jen B." you know I mean in SLP years.

Autism awareness thank you number 2!

Sam gave me a lot of first hand experience with language development.  It was a definite advantage in school.  It has also made me a bit of an snob because I knew what really high quality speech therapy looked like.  Jen was my supervisor for a quarter during grad school.  Jen is of the highest quality.  She is so much more knowledgeable than I am.  I can, and have, learned a lot from her. The very best part? She works with my son.

Jen, thank you for your input in the meeting today.  I appreciate your professionalism and focus.  I'm really looking forward to Sam's time with you in high school.

Melissa

I decided to go in another direction for the moment.  This is Autism Awareness month.  Let me just say it right now....I have no autism swag.  No multi-colored puzzle piece ribbon pin or t-shirt.  No blue light on my house.  Nothing that would let you know I'm aware of autism.  Except for Sam.  He is the only autism awareness accessory I have.

Because I'm too lame to adorn myself with autism, I am going to write a couple of autism specific "Thank Yous" this month.  Just making you aware!  Here is number one.

Melissa.....or as Sam calls her when she is making him work (eyes squinty, scrunched nose) "Mah with ah."

Melissa joined the Sam autism express at the end of his 1st grade year.  I love having Melissa at Sam's meetings.  She is very smart and knowledgeable about Sam and autism.  I have always known that.  Even when I point out scope of practice with my mean mom "back off" SLP attitude, I know that  her knowledge base goes beyond what can sometimes be arbitrary boundaries.  (Ok, I said it.  It's in writing that you can print out any time you want.  Quit smiling!)  I also love that she knew Sam when he was nothing but a lump.  I know that sounds terrible, but he was a lump.  He was a lump that would have laid in a bean bag chair rubbing a feather across the tip of his nose while he sucked his finger all day if he had his druthers.  Melissa guided everyone on how NOT to let that happen.  Now he can go into Target, order a snack, pull out his wallet and give the correct dollars to pay.  It's kind of amazing to see.

After several building/staff changes over the last 7 years, Melissa is now the only non-family member who knows that transformation.  She also played a major roll in helping get Sam from lump with a feather to teenage boy who looks up plastic surgeons specializing in breast augmentation on the internet.  (And they thought he wasn't paying attention in health.)  She supported me when I was the only one who believed Sam had untapped potential.  She has even supported me to give something a whirl when she didn't totally agree with me.  That's important because she has been with Sam for seven years and may be with him longer.  But in the end, I will be with him the longest.  Having a professional that understands that if there is a mistake to be made, it needs to be mine is what makes her golden.  I take that back.  It makes her platinum.

There are a million stories and instances I could share about Melissa from knowing her over the last 7 years but I will share this one thing.  It's my favorite piece of advice she gives to people who watch "Rainman" or "60 Minutes" and are sure they want to work with kids on the spectrum.

Melissa says that if you don't go home after some kid with autism beats the crap out of you all day and think "Wow!  What can I do tomorrow to reach him?" you are not meant to work with kids who have autism.  That is what makes her qualified to do her job.  She sees reward in the challenge and doesn't give up.  Even when the kiddo in front of her is a lump....rubbing his nose with a feather...while he lays in a bean bag.

Melissa, thank you for seven years of support and guidance.

Mr. Johnson

Before I had kids, my understanding of education was that as long as I put a kid on the bus each morning, I was guaranteed that child would be returned to me that afternoon with a day's worth of newly acquired knowledge.  Eighteen jaded years later, I realize there is no guarantee like that which makes me more appreciative when something unexpectedly good happens.

Mr. Johnson, thank you for saving the day by running interference and making sure Max had the opportunity to turn in his paper.  I'm sure that he is spending the next 3 "screen time free" weeks feeling thankful too.  Ok, maybe not.  But he should.  And thanks for pushing today's meeting.  I wasn't so sure why we needed to have one, but it turned out it was spot on necessary.  Quality.

Anna

Today Dr. C asked me to come speak to her class with a few other SLPs.  The first thing she said to me was "Hey there, Hot Momma!"  Really, I should probably be thanking her, because, let's face it...at 42 everyone loves to be greeted that way!  On top of that, I love a captive audience who has to listen to me blah, blah, blah about students with speech language needs and my own kids.  Alas, this thank you is not for her.

One of the other SLPs said, "Hey!  How are you.  Long time no see."  It was a long time.  So long, I wasn't too sure I could place her.  Then she explained and I thought, "Oh crap!"  because I was a really mean GA for one of her classes.  It was all on-line, so I'm not sure we ever actually met.  She said she remembered me from the PrAISE conference.  In particular, she remembered my presentation.  "Really?" (wrinkled nose of disbelief mixed with absolute pleasure as ego swells.)  She replied, "Yes!  People talked about it for a long time.  A really long time."  In truth, they could have been talking about how much it stunk.  Or that I am long winded.  Maybe I had food in my teeth or an unfortunately large boogie hanging out of my nose.  I didn't bother to ask so that I could assign my own meaning to that comment and feel happy.  Which is always nice.

Anna, thank you for the very nice (I'm assigning positive meaning to make it a) compliment.

Shomo

Josey had her first foray into organized school sports this year.  Gotta say, not a big sports mom.  Partly because I was never into sports myself.  Partly because I think some people put too much emphasis on high school sports.  Really, is there anything more pitiful than a grown man boring some poor soul with endless stories of a football game everyone else forgot about 5 minutes after graduation?  That's why I  was so happy she picked running.  It isn't a high school sport, it's a lifetime sport.  Shomo is the perfect coach to teach that.  He had the kids set personal goals with each race.  Although team wins were important, improving on personal best was really the goal.  Josey really pushed herself.  She actually fell at the start of one race, popped up and still set a new personal best.  And she has asthma.  That's quality.  She has now moved on to track.  Regardless of how her season turns out, I'm already proud of her for branching out and trying the field events.

Shomo, thanks for being the kind of coach who teaches the kids lessons that last a lifetime.

Gale

Thank you for having us over for Easter.