The following is a letter I wrote to our "Letters to the Editor" section of our local newspaper.  I doubt they will print it, it's longer than usual, and I have no special gift with words. But I feel better for writing it ....

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I am writing to tell the community of a heartbreaking event that happened at the Santa area in Rotterdam Mall, on the evening of Wednesday, December 8^th. 

My daughter and I had a nice dinner at the mall and headed over to get my grandson’s picture taken with Santa.  My grandson has Autism, so it’s a bit difficult to keep him occupied while we waited for Santa’s return at 5:15.   

Santa arrived and since we were first in line we were ushered down to Santa’s area for our pictures.  The gentleman taking the pictures was pleasant, friendly and very patient.  It was taking our little guy a bit longer to realize what we wanted of him (to sit still and smile with Santa so the man could take his picture). 

I could tell by Santa’s face that he was getting a bit impatient.  We set up a chair next to Santa because our little guy kept jumping off his lap.  At one point, my daughter went to sit him further up in the chair and while she was doing that, she told Santa “I’m sorry it’s taking a bit longer, my son has Autism so he is impatient to be moving”. 

I was standing a foot or two away.  Imagine my astonishment when I heard “Santa” say “Well that’s your fault for feeding him lead in his food”.   WHAT???

To say that ruined the whole evening would be a gross understatement.  My daughter at that point picked up our little guy, told the photographer to print the best picture and while she paid for it, I calmed our little guy and got him into his coat.  I have to say how much I admire my daughter for not losing her temper or making a scene.  However, knowing there were other little ones in the area and my grandson was gearing up for a melt down, she decided to wait to put in a complaint. 

I called my daughter in the morning, intending to return the pictures (can you imagine the memory they bring back when we look at them).  She asked me to wait, she would call and talk to someone.

To make a long story short, even after a few calls from friends and other family members, the company basically said “sorry, your word against his and he said he doesn’t recall the incident.”  I would like to take this time to remind the company that it is mine and my daughter’s word against him as I heard him very clearly.  To be honest, all my daughter was wanting was a sincere apology from “Santa”.  You know, the guy they hired that is supposed to be happy, jolly and loves kids.

Why am I writing this letter?  I just want to let my daughter know that not everyone is as ignorant and uneducated about Autism as this man obviously is.  More and more, our community is becoming aware of our special little ones and the strong dedicated parents that love them.  And I also wish to let our community know about the company that so obviously looks the other way in favor of this ignorance.

Deborah Provost

Eric’s Grandma

It was a busy day yesterday and a great day with my little guy.  Today will be another busy day.  Pop-Pop is playing with Eric while Nikki and I head out to get some shopping done for a few hours.  Then we will be headed to a Christmas Party sponsored by the Autism Society of the Greater Capital Region along with a company called Quick Response Restoration.  Eric will have his picture taken with Santa and get a present.  I'll be trying to get a good shot of him for Nikki's Christmas cards. 

Not much else is happening.  Eric still hasn't gotten into his new school, but it's progressing.  They are busy evaluating him and writinng up a plan for him. I believe Nikki said it will happen somewhere around the 13th.  

So on that note, guess I'll get ready for my day, it'll be a busy one. 

Meanwhile, Eric continues to not really like chairs and is getting soooo smart on the computer. 

Even Balloons are a preferred choice.  LOL!



Days Like These

How do I even begin to explain how hard it is to hear my daughter call, sobbing -- just crying "I can't take it anymore"... and knowing at the same time that my grandson is suffering as well.  That' I'm not with her and I can't take her in my arms and let her cry it out.  That I'm not there to help her when he does this.  How can I tell her that he loves her, even though it doesn't seem so at times.  How his face lights up when he sees her walk to the car for him -- or across the yard to get him.  How she makes him laugh his big belly laugh like no one else can. 

He is once more going through his phase of meltdowns -- serious meltdowns that I believe have him so overwhelmed he cannot control himself.  They seem like tantrums, but "we" know the difference.  It's hard to know the difference.  Not being able to control himself, complete disregard for his own safety or that of others.  Has no regard for where he is or any social situation.  Not being able to stop himself no matter what.  A meltdown may happen because he wants something he cannot have,  and after a certain point, nothing, not even what he wanted or anything else can satisfy.   Meltdowns hurt -- both him, my daughter and, even when I'm not there, -- me.

He was going through a wonderful growth spurt (that's what Nik and I call them) where he was learning, laughing, able to bring himself back from quite a few potention meltdowns.  What is it that has changed?  We don't know.  He can't tell us and all we can do is guess and speculate. 

Is he sick and hurting and can't tell us...Nik will call and make an appointment to have his ears checked and anything else that the dr might suggest.  It wouldn't be the first time he's had an ear infection and we didn't know.

Is it his school?  He won't be getting in his new one till the end of the month.  But two mornings in a row he did not want to get on the bus.  Since today is his last day till the 29th, what harm would keeping him home do for a few days.  Let's call the new school and check on how things are progressing -- do they have a date yet.

And to top it off, when my daughter calls she is told that maybe Crossroads isn't the right place for him.  Huh?  What?  After we met with them and they told us it was definately the right place for him?  After they showed us around and we saw for ourselves how wonderful he would fit in there?  I heard them -- they were anxious to meet him and hoped to get him started as quick as possible if we were interested in having him go there.  Now all of a sudden it's not the right place?  "Well, he can only go here two years"  What?  After we were told the school helps children almost into the middle school years.  What? -- did they find someone else they wanted more?  No fair....  All they did was add more frustration to my daughters day. 

But I'm grandma -- calling them and telling them what I think wouldn't be appropriate and would probably make more trouble for Nichole getting him in at the end of the month.  Honestly -- now I am not so sure I even want him there!  Be brave and strong for Nik -- that's all I can honestly do.  Being Grandma sucks sometimes -- I want to raise some hell.  But like I tell Nik -- where would that get us? 

I want to make things all better for my daughter -- and for Eric.  And I want everyone to know just how wonderfully strong she is -- she always gets through.  No matter how bad she wants to give up.  She never does.  I wish I was half the mother to my "normal" kids that she is to our little man.   You are not alone Nichole.  Not ever.

New School Update

Yeah, I know.  I'm so original with my titles.  NOT!

Do you believe next week is Thanksgiving?  Wow...time is zipping by and I AM NOT READY!  NOT EVEN STARTED!  Ok, we won't go there.  I'm stressed enough already.

As you know, Nikki and Daniel have been looking over new schools for Eric.  I toured two of them with Nikki and we loved both.  But after touring both of them, Nikki really, really liked the second one, Crossroads.  It is a small school for children with Autism.  We both could picture Eric in this school.  They let us view the classrooms and see the teachers interact with the kids.  They were so indepth in their interview and rather than focusing mostly on the school, they wanted to know Eric himself.  And when we talked about Eric, they were able to tell us something about the school that might help. 

The first school, while I liked it as well, was mostly focused on showing us the school.  They mentioned that if we were interested they would like to meet and get to know Eric as well.  I guess I was impressed that the second school was mostly focused on Eric himself right from the get go.

Anyway ... before I get to rambling on...HE WAS ACCEPTED AT THE SECOND SCHOOL AND WILL START AT BEGINNING DECEMBER!  YAY! 

We are so excited because we feel that after his transition into the school he will skyrocket.  We have heard many good things about Crossroads ... how successful they are at helping kids understand and grow.  We know that Eric is capable of so much more -- now we have the help we need to bring him out of his world into ours.  The school encourages parent visits, geared to keeping things consistant for Eric, at school and with his family.  Perfect! 

I went to dinner with Nikki and Eric last night at Ruby Tuesdays.  It's taken first place over 99 Diner as our eating out place because of their awesome salad bar.  He is quite a character.  He kept us smiling and laughing the whole time.  Of course he will be mad at me Friday night when he visits because he didn't get to play at MeMa's last night.  He's good at the cold shoulder and never forgets he's mad at you.  Funny though, as soon as he makes it known hes mad at you, he's not mad anymore. 

So tomorrow night, I will look forward to another night of chaos.  I sure wish he would prefer to sit in the chairs though.  Wonder why he doesn't like chairs?

Halloween Cupcakes!

Saturday morning and tons of cleaning to do.  I have Eric till around 1 or 2:00 so he will get to "help".  LOL!  Help mess up that is...  : o )

As I've mentioned Nikki is keeping a close eye on Eric at school.  She does surprise visits to his classroom.  On the Friday before Halloween I tagged along with her.  I guess the school was having some Halloween Parties.  We got there in time to see the kids decorating Halloween cupcakes.  Yummy.  With a little help from mom, Eric finally finished his:

Here you go mom!  Eat up!

Hey!  What do you want?  I'm only 5



MeMa will eat it...won't you Me Ma!

: o )

Where are the Doctors??

I just watched a series of videos from You-Tube.  Got me thinking --

I'm still new to this -- all this Autism research, and there is so much information to digest.  And honestly -- sometimes some of the things I read are so technical it may take me days before I understand what one article is talking about.  Picking it apart bit, by bit to understand some of those hundred dollar words that are used.  But I keep at it.  There is a key somewhere to our Eric.

One of the things that puzzles me, as Autism beomes more prevelant in our society today, is how few Pediatritions know anything at all about Autism.  When Eric was diagnosed the statistics were 1 in 150 and now, five years later, the statistics are 1 in 100.  What is happening to our children?  And why aren't there more Doctors, especially Pediatritions being trained or educating themselves about the Autism Spectrum.  I have to admit that before Eric was diagnosed, I knew next to nothing about Autism.  But you sure can bet that once he was diagnosed, I was a master researcher as was my daughter Nichole.  There is nothing we would not read or study or try.  It was a challenge...bring our little guy back into our world.  Why don't more doctors feel that way?  Are they not challenged to find answers or learn more?

One the the things this video talks about, is that we need to treat Autism as physical as well as neurological.  I am so much in agreement.  There are tests that can be done to make sure the child does not suffer from any physical problems that may be happening -- that also may be affecting his Autsim treatment.  How can the treatment be effective if the child is in pain that we don't know about?  The video tells us of some things we can do to find out.  Why then, didn't any of Eric's doctors suggest any of these things?

How do we know when Eric has an ear infection?  We can never be sure, but we look for the usual signs that he may be in pain, such as pulling on his ear, a fever.  He cannot tell us, so you can imagine that there have been a few trips to the Doctor for false alarms.  But so what...we want to be sure.  How do we know what else he may be feeling if he cannot tell us?  Where are the doctors to help us figure this out?  I'm sure that there are some out there -- very few.  None that I am aware of in the Capital District area where I live though.  Not even one that I can find.  Come on, make me a liar.  I would love it.  Not one DAN doctor in a medically advanced city such as Albany N.Y.

Anyway, this is a great video.  It came from a website I visit called "Yes, I am Autistic, And proud of it! :)" that I have on my Facebook.  She posts the best articles -- and yes, she is Autistic.

Gotta run, it's almost time to head home and I have a few things to finish.  Have my little guy tonight.  YAY!

Here is the link:  Don't forget to tell me what you think. 

http://www.theautismnews.com/2010/09/29/autism-suffering-in-silence/

Yes! Eric's Grandma is still around

Sorry to be gone so long, and barely before I started this blog.  Typical of me.

I've been so busy.  Keeping an eye on my little guy for Nikki, getting ready for a trip across the country, taking that trip across the country.  Birthdays, and other end of the summer events.  Excuses, excuses right? 

Is it ok if I just start off from here instead of filling you all in?  No huh?  Ok -- just a summary?

Eric started school - did not do well at first so butterflies  intensified, helpless feelings intensified. 

Then, he started to do very well, with minimal problems and we started to relax. 

Nikki - worrying that the school is not the right place.  Eric needs someone who will make him learn.  Will make him come out of his comfort zone.  Only when he gets pissed off and angry does he learn.  Weird, I know.  But it's almost like he's saying "See, I can do it - now will you leave me to my world" ---   We need to bring him to this world.  Nik feels this school is just maintaining (aka babysitting).

Major shakeup event with Eric at school.  There is no way I can talk about this right now.  I'm still too angry.  Maybe someday.  But lets just say we are looking into other schools for Eric.  His Early Intervention Team (who are wonderful) and Nikki and Daniel are hard at work on this.  There are so many procedures and approvals to go through.  Daniel even threatened to move out of the District, just so he wouldn't have to go to that school.

Anyway -- that's just a rough sketch. 

Autism Walk was a great success!  We raised our $1,000. and had a wonderful day. 

Eric had a wonderful 5th birthday party.  The first time he really got into the swing of things and had a blast!

Halloween was fun!  He made the cutest little dragon....and M'Kayla was Little Red Riding Hood (or "Little Red in the Hood" as she says).  We tried to tell her we didn't live in the "Hood"...

One of our neighbors even gave him a toy motorcycle instead of candy....

So that's just a brief summary of some of the events.  Mostly because I'm running out of time to finish.

It's a rainy Thursday in Upstate New York -- I'm looking forwad to going home to my sweats, my comfy chair and my shows tonight.  I don't have Eric till tomorrow night and believe me, I sure could use this evening of rest.  Even husband is going bowling, so I have the house to myself.  Love that!



Huge Butterflies

I have such butterflies in my stomach this morning.  Got hardly a wink of sleep last night.  Eric starts his first day at a regular Kindergarden today.  Yes, it is Orientation, and his mom will be there.  But you see, my butterflies are for both Eric and my Nikki. 

I know too well her struggles and her worries about this - and no, I cannot feel the whole extent of her pain and worry, cause, well....she is the mom.  But I'm her mom, and Erics Grandma, so I do feel quite alot of it.

I've been sitting here reading the other blogs -- its not just Eric, I feel for all the moms and kids with Special needs.  There are days I'm filled with joy and hope when I read them.  Right now, with school looming (some have already started), I'm afraid. 

There is not much more I can write at the moment.  Time to hit the shower and start my day.  It's been a busy last two weeks, and I've lots to post.  But this is all I have at the moment.  All that fills my head. 

I love you Eric Daniel, and no matter what you find in the world out there, your family adores you.  I love you Nikki, I'm so proud of the mom you are and admire the strength you have.  Eric was sent to you for a reason.  He is special and so are you my love......

Blessings to all the moms out there who need them now. 

Lady Clariol you are no match for Eric

More grey has been added to my head.  I came from the kitchen into the dining room  yesterday to find Eric standing on the dining room table, reaching for the chain that controls the ceiling fan and light.  Not that he was really in any danger - honestly, the table is sturdy and he was right in the middle.  And believe me some of his other daredevil maneuvers have been much more hair raising than that one.  It was just a shock I guess, as he has never attempted to stand on the dining room table before. 

The chairs, yep...all the time, to see how high he can jump off them (very high)...almost higher than he can jump off the 4th step going upstairs.  He can also run really fast...and much to my relief he can stop on a dime before he hits the walls.  sigh.......He's mastered piling things up to climb up to where he wants to get something.  I don't know what he was aiming for yesterday by piling his kid size Adirondak chair, onto his table in his room and trying to add the laundry basket upside down.  There isn't anything up that high -- and he must have figured that out because he stopped trying after the laundry basket kept falling off the arm of the chair that was on the table.  Good grief...

Anyway, I found myself wondering how he connected that the fan and light are controlled by those chains - they are rarely used (and I yes, I noticed the dust that gives that little fact away).  We have a switch on the wall that can dim the lights and control the speed of the fan.  He has mastered that, and we don't even have to lift him up to do it anymore.  I don't believe he  has seen anyone use the chains -- we really never do.  He is so darn smart.  He made sure I wasn't looking.

Yesterday was his mommy's birthday and we had cake waiting when she came to pick him up.  Eric loves the "Happy Birthday" song and we clap when we sing it cause he loves that too. 

Happy Birthday Mom

Clap Pop-Pop

This is so fun!

Love you little guy!

Another weekend hanging out in the boonies.....

I won't have the opportunity to see my little guy this weekend.  He's with his dad while his mom, Nikki and I go to a baby shower.  This is in the boonies too.  A different set of boonies....different direction.  We are headed to Bleeker, where my dads house is on the mountain there.  Yes, a real mountain - and I can only hope my car (with the brand spanking new $870 clutch) will make it up the mountain.  Last weekend's visit to the boonies destroyed it completely.  How they can enjoy living so far from civilization is completely beyond me.

So, have fun with Daddy Eric!  Me-Ma will see  you Tuesday!

Weekends are too short...

We had a great time in Newcomb. Too bad we had to come home. Eric is probably thinking the same thing.

He was well prepared for the ride,

He had his beloved hose time,

LOVED THE BOAT

Of course there just had to be a spider on the boat, 

Big babies...

Not too crazy about the first four wheel ride, but insisted on a second ride while he decided if he liked it or not

who can forget one of his favorites, the playground....

....aren't we all just kids at heart?

Wonderful weekend, much too short, and according to Eric, tooooo many pictures Me-Ma, 

No more.....

Have a nice weekend everyone.  Eric is spending it with his daddy, and Me-Ma is heading North to a different set of boonies, for a baby shower and to spend time with sister and dad.....

Later!

Traveling to the Boonie's...LOL!

We are going to see my sister and brother-in-law in Newcomb. Waaaay in the boonies. It is a 2 hour ride.

Eric loves to see and do new things. However, he is not so crazy about the ride. Sitting still for such a long while is completely out of character for him. Can you imagine what it was like during the 7 hour ride from NY to Delaware last month? We have learned to make frequent stops when necessary and to keep the gameboy handy (hidden until needed). Here, Eric decided M'Kayla was talking to much. He is such a character. I probably didn't mention that Eric is non-verbal. Although he does say a few words now and then, he has yet to completely learn to communicate by speaking. M'Kayla, however, has no such problem.

It is a bit difficult traveling with Eric, but oh so worth it. He has been known to have melt downs during long drives, and hates when the car stops at all, even just for a red light. Believe me things can get pretty tense. Once in full meltdown there is no alternative but to stop the car till things calm. Not always easy on the highway.

Eric is an extremely picky eater. I guess I'm in charge of bringing Eric's Mac and Cheese, which he will only eat for me in one of my bowls from home. Nik will take care of his waffles and Almond milk... he will eat fruit bars, pizza, grilled cheese, Dorito's, cinnamon toast and chicken nuggets as well. On occasion we can get him to try something different, but it is very rare and he never eats it a second time. We never give up trying to get him to taste new things.

On Sunday's, my nephew Louie and Nichole experiment with receipes and spend the afternoon cooking. Louie has been known to chase Eric around the house with spoonfuls of whatever they are cooking at the time.

As you can see by the picture, Eric just laughs and manages to get away.

Yes, it would be so much easier to avoid traveling and therefore avoid the headaches, heartaches and frustrations that it brings at times. But think of all the great experiences we would have missed and the memories that wouldn't have been made and the things we wouldn't have learned about Eric (make sure he's eaten and has a full belly before the trip) or even the things that Eric wouldn't have seen or learned (like how much he LOVES the ocean). Traveling with a child with Autism is difficult and yes there are times it is impossible. But we try, and the times we are able to complete the trip, or the adventure are learning experinces to us.

So .......wish us luck this weekend --- we are on our way to Newcomb!

Imagine my Surprise

For the past two days I have searched online for a blog written by a grandparent of a child with Autism. Even though I know of one or two that exist, I couldn't find one. Not even my friend G's blog (who I know shares my challenges and joys of grandparenting a child with Autism). Imagine that? But we are out here.....loving, supporting, caring -- and in my case wanting to share more of what has become a major part of my life. Actually, it's overtaken it...but I don't mind (at least most of the time).

But what I can tell you about are the wonderful, fantastic, informative blogs I've found written by moms and dads, which I forward directly to my daughter. I enjoy following them, keeping up with the progress made, quiet thoughts, frustrations and tremendous joy. However, my view is different, being a grandparent and not directly on the front line. .. Although I am mere inches behind the two who are...Mom and Dad.

Our Eric was diagnosed at age 18 months...I believe it was March or April of 2006. My daughter Nichole, Eric and Eric's daddy Daniel, were living in Bradenton, Florida, when my daughter began to suspect something wasn't right. The "unofficial" diagnosis came from there. More tests needed to be done. My daughter, scared and feeling alone, wanted to be home near her family. Daniel agreed and they relocated, back to New York, and moved in with us until they settled in their own place.

There are no adequate words to tell you the emotions I experienced upon hearing Eric's official Diagnosis. Holding my crying daughter in my arms, looking over her shoulder at our little guy, the only thing I could think of was that I needed to be strong. For my daughter Nichole, for Daniel and for Eric. There was work to be done and a little boy to save.

Anyway, meet my little guy Eric...


His school "Cloverpatch" took a trip to the Saratoga County Fair and his mom and I tagged along. He's resting with his MeMa...and the look on his face says he's staying right there.

Now off to find Gail and see how she's doing with her little one.
Oh, and since I'm at work I really should do a bit of invoicing as well.