Tuesday, November 23, 2010

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.

Thursday, November 18, 2010

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.


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?

Saturday, November 6, 2010

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 )

Friday, November 5, 2010

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. 


Thursday, November 4, 2010

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!