Playing Hooky

I have a cold- Nate has a bad cold.  I couldn't get him to get out of bed this morning.  This is a totally foreign concept to me, a child not wanting to get out of bed?  We don't have that in this house.....

So I set about the morning of a busy mommy, rearranging the day.  Figuring out logistics,  making the usual plans, cancel this doctor appt, call the school, call the busdriver, call the home visit tech who is supposed to come on Mondays, call the sitter to see if maybe if I say pretty please can she come a bit earlier.  Yes, I feel crappy too but this rarely keeps me from work.  Then Nate came over to me, put his head on my knee and I said screw it.  My baby needs me.

Some days you have to snuggle your baby.  It's a mommy requirement.  There is nothing today that is more important than taking care of this sweet child.  So I made a few more calls, and now I have my little velcro boy snuggling on my lap.  Excellent morning.

Giddy Up!!!

Well there's good news and bad news. The good news is that Jack decided to branch out this weekend.  He found a new interest.  The bad news is that as always, he took it to the "Jack" level of interest- aka fixation.  I have talked about this in the past:


http://jackandnatesmom.blogspot.com/2012/09/aspergers-and-fixations.html

I am always amazed by just how fixated he can become on a seemingly mundane subject.  I mean, this is a kid who shows major ADHD symptoms, I have to ask him a million times to do something, and he has tremendous difficulty focusing in school.  And yet, when it comes to an area of interest, I dare any one of you to get his mind off the topic.  It all started when I went out for some so called "me time" on Friday night.  I went to the mall and bought the boys' easter outfits, went clearance shopping for the boys for next winter and then went book clearance shopping as well.  And yes, this does so count as me time because I did these things without being interrupted, so there.  I found a book on horses and colts in the clearance section and got it for Jack.  It was 3 bucks and he has talked about them in passing before.  I thought he might enjoy it.  I wasn't wrong, lol.  The next morning he was nonstop talking about it, and asked to watch a horse movie.  My sister will love this- netflix streaming has The Black Stallion right now.  Jack asked to watch it basically continously all weekend.  He is hooked. 

When he gets like this, as his parents, John and I can feel like his puppets.  He is constantly talking to us about the day's subject and it's the same thing over, and over, and over.  This is when it really helps to have a partner- so we can exchange looks, pretend to shoot ourselves behind Jack's back, whinny when he walks out of the room, etc.  For instance, Jack asked each of us no less than thirty times today what type of horse is in the movie- you know, the one CALLED the Black Stallion.  It's like he physically needs to hear us say it.  So he will stand there with his little hands on his hips and say over and over, but what is he called- and we try to redirect as we've been taught, "you tell me", or "I think you know", but he will not be deterred.  He wants us to say it and he can hold out for a long time.  He usually wins.  At one point this weekend I caught myself sputtering "stallion! stallion!  it's a freaking stallion!".  This quieted him for about 5 minutes. 

The hardest part of these new spurts of interest is night time.  He worked himself into one of his frenzies last night- he was up from about midnight until well, morning.  John and I found ourselves mumbling "stallion, stallion, stallion" in our sleep because Jack was standing at one of our sides of the bed demanding we say it.  He had all of his supplements yesterday, including his slow release melatonin.  I dosed him with short acting melatonin 3 times during the night.  It did nothing.  I just can't imagine what this must feel like for Jack- I mean yes he is keeping us up for an obscene number of hours- but he is up all that time too and he can't quiet his thoughts enough to fall asleep.  I have seen kids do this when they are afraid of something, but just because they think something is cool?  It just has to be weird to be that focused on something, that's all.

Today he drifted off on the couch, in the car on the way to run errands, and in the car on the way home from a birthday party.  I woke him up relentlessly, I wanted him exhausted at bed time.  He was tired enough that he put himself to sleep while I was reading to Nate.  Hope it continues all night. 

Mommy Knows Best

I went to the Principal's office today for the first time since I was in kindergarten and got in trouble for jumping in a puddle during recess.  OK, so really it was a conference room, but still.  John and I met with the principal and the assistant principal of Jack's school this afternoon.

 This meeting was the result of my visit to Jack's classroom last week, when I saw multiple things that really really concerned me.  I emailed the assistant principal, who is the administrator that participated in Jack's last IEP meeting and she had us in within a week for the meeting. When you have the ear of someone who can really help your child, you feel quite a bit of pressure to make sure you get everything out.  I wanted to make sure I painted a full picture for her of Jack, and of my worries.

So I started briefly at the beginning, I talked about the fact that I have known that Jack has these needs for a very long time and feel like he is a child who could slip right through the cracks; that I don't feel like he has ever had enough services; that he is crying everyday before school; that he is coming home with his work blank daily; that a boy in his class tells him to go away and stop talking every single time he opens his mouth and Jack happens to be seated right next to him.  I'm sure there was more, but I can't think of it right now.  I cautioned John before he came with me that I wasn't going to be holding back in this meeting, that it might be hard for him to hear all of these issues rapid fire.  He hadn't been able to attend the last IEP meeting and most of the communication with Jack's teacher and providers is through me.  So sometimes I think it can be quite a shock to step into a situation like this in the middle of the storm....but he did great.  Thanks for coming honey, I'm really glad you did.

The principal began her statement to me by saying that they have quite a few kids with aspergers at Jack's school.  She also said that they were astounded when they saw the IEP that followed him from his pre-K and how few services he was receiving- that they knew that has to change.  She told us about a little boy who was in a similar situation to Jack's several years ago who is now in all honors classes in fifth grade.  She was quick to assure us that she thinks it is appropriate for Jack to remain in this school, that he doesn't need special placement at this time.  I appreciated her saying that to me.  I do completely believe that Jack is capable of achieving at that high of a level academically.  She stated that one of the things that made a huge difference for this child was the ability to type all of his work either on a laptop or an ipad.  That his fine motor deficits were holding him back in so many ways- making his work slower, making him frustrated, causing him to lose focus.  And I can see that, although I certainly don't think fine motor is Jack's only issue (nor does she).  She did say that if we get Jack to a point where he is very proficient on the ipad that it can replace writing in school almost completely.  Handwriting is just not as important as it used to be, so the school has become very flexible about this.  Now I just have to find the funds for this among all of our expenses....sigh

They already had a new schedule typed up for Jack.  Before we even spoke.  He now has adult assistance basically for every minute of the day.  It remains a bit piece meal in that it is not the same individual all day.  But I understand that this is something they are scrambling to get into place.  The principal made me aware that she has spoken with the head of Special Ed for the county about the increase the school has had in need and has requested that they audit the school's needs vs the staff they are allotted.  She is trying to get a dedicated aid for Jack.  Mama can take a bit of a deep breath.  Also, she is going to ask the teacher to separate Jack from the child who telling him to go away all the time- Jack has enough challenges, he doesn't need someone putting him down all day when he is struggling to begin with!

Jack will have someone with him for lunch, for recess, for all academic areas.  It sounds like moving from class to class he will be ushered by the teacher, yes, kindergartners CHANGE CLASSES for subjects these days.  What the heck is that??? I didn't do that until sixth grade!  They organized the help by periods of the day instead of subjects which makes a lot of sense since the schedule seems to change daily.  He will also attend a social skills class weekly.

OK, I have to say this.  As his mother, I get that people around us may not always recognize the depth of Jack's issues.  Because he's chatty, because there are times (especially when he's in a situation where the ratio of adults to children is like 4:1) when he acts like a completely neurotypical kid, because up until now, he has often been able to compensate for his challenges because he's brilliant.  But mommy has known.  Mommy has known that he cannot be put into strange unfamiliar situations without his parents, and even then it's questionable.  Mommy has known better than to take him out in a crowd without major preparation, or somewhere where there is loud unpredictable music, or somewhere there are bugs.  These are all major triggers for Jack.  There have been many many times when family and friends have not seemed to understand why John and I have held back from certain situations, or seemed incredibly tense or uncomfortable in a particular venue. 

THIS IS WHY

Our child does not handle changing situations the way other children do.  He experiences all noises, movements, touch at a far more intense level than other children do.  And mommy has known.  It affects every aspect of his life, and it is our job, as his parents to protect him from situations that are too much for him.  There is no one else who knows him as well as we do.  And we have not been wrong.  We were never wrong.  I was never wrong.  I was doing the right thing for my baby. He can't follow his daily routine at school without constant adult assistance, if one fire alarm goes off it  causes him to wear headphones for a month,he can't sit down to complete one worksheet without being prompted approximately 20 times (this is not an exaggeration, at all).  His teacher is overwhelmed and she's been a teacher for 30 something years.  I said this to my mom earlier, and I feel kinda bad about it, but I feel vindicated.  I don't want Jack to have problems, but if he does, and I know about it, I want it acknowledged and addressed.  I don't want it minimized, ignored, or treated as bad behavior.  And it's happening!  After almost 6 years of me feeling like no one believes me, or understands how truly difficult this has been, it's happening.  Just thinking about that I feel my whole body relax just a notch.  My baby is going to get what he needs.  Because I won't stop until he does.  And I have been and will continue to do the right thing for him.  Ahhh...clarity

Nate Has Something to Say

So I think I have mentioned before that delayed speech in autism is not necessarily about an inability to speak, but a lack of understanding of the purpose of speech, of communication in general.  Basically, what's in it for me?  Nate has definitely fallen into this category for a while now.  I used to say to his initial infants and toddlers visiting therapist that I just didn't understand why he wouldn't repeat me.  Well what was saying "duck" gonna do for him?  Not a whole lotta. 

That's why the first stage of speech development is called the own agenda stage.  Basically the child has their own plans and if communicating with you doesn't make them happen then pooh on you.  Many kids with autism stay in this stage a long long time, and Nate was no exception.  The next stage is called the requester stage.  Nate has been in this spot for at least 6 months now.  So the main time he wants to and understands that he needs to communicate is when he wants or needs something.  It all started with a simple little word called "more".  He has gotten more and more assertive with letting us know, from walking over to us and saying more, to grabbing our hand, turning it palm up, and putting his cup in it, to now grabbing our hand, pulling us out of our chairs and to the area where the desired object is.  This is part of why pointing is also such an important precursor to speech as well- it is evidence that the child gets that they need to let the person know what they want or they won't get it.  Pointing gets frustrating after awhile, believe me, my mother in law listened to me say "this? this? this?" for a good 15 minutes the last time she was here for dinner.  After all of that time I finally figured out he wanted a frozen waffle.  Yes, I am a genius, ha.

So what we have been waiting for with baited breath is the early communicator stage.  The point where the child is starting to talk for reasons other than physical needs.  It's coming, I can taste it.  And this morning I got a good sampling.  I always talk to Nate about the bus in the morning, seeing "Mr. Sam" the bus aid and "Miss Robin" his teacher.  This morning as I was talking about it he looked right at me and said "Nate, bus".  Right after I fell out of my chair, I said yes, that's right.  Then he looked at me and said "mama, byebye".  Then he started crying and saying "ma, no bye". 

This is huge.  He also has said "Annie" for the sitter and supposedly "Riley" for our dog- although I missed that one.  I am praying this amazing trend continues....

What a Difference a Year Can Make!!!

Today is my 1 year blogiversary!  I can hardly believe it.  I never thought I would get the type of response that I have.  I initially started the blog to keep family and friends updated, to vent a bit, to avoid being asked the same questions over and over.  I have definitely accomplished this.  I just wasn't necessarily expecting that other people would be interested too!  Now, I am not a frequently viewed blog by blog standards, I don't have thousands of views everyday.  However, I do have about 80-100 views each day.  I have had close to 20,000 views over all.  I have about 100 facebook followers and over 600 twitter followers.  Not too shabby for a year's work!

The blog has become so much more than just an update vehicle to myself and my family.  My first entry was the result of feeling very very alone, of feeling desperate for some support from somewhere.  And it came in droves.  I tried to prepare myself for both negative and positive feedback.  The negative never really came, and this has truly become my sanctuary.  A place where I can vent about, pray for, praise, or freak out about the boys.  A place where I can honestly share the impact that the boys' challenges have on my life, my work, my marriage.  I thought I was losing my family when I started the blog- instead, it is more solid than it has ever been.  I was feeling hopeless when I first wrote- I can't say we have made crazy progress, but I have documentation of the progress we have had, and it is there.  And that means something to me. 

Thank you to each and every one of my readers.  I was saying to a friend of mine last week that I am always amazed when I run into people I haven't seen in a long time- I never know who reads in general, but these days it is immediately obvious by the person's greeting.  I either get "how are the boys?" or "I read your blog every day".  The people who read don't have to ask.  And that was the point!  Your support means everything to me.  I know I could do all that I am doing without writing about it, but this outlet really does help me process everything. 

Dodging a Sensory Bullet

Jack went to a birthday party for a little friend in his class yesterday.  It was at one of those bounce places- I was a little worried about the noise and the large number of kids- worried about sensory overload.  There were probaby close to 30 kids at the party.

So they lead us into the first of 2 "bounce rooms".  This was a swanky bouncy place let me tell you.  The kids are handed glow necklaces and they start playing.  Suddenly they turn out all the lights, turned on loud music, put on flashing colored lights, and a disco ball.  Then about 5 minutes later they turn on the bubble machine so there are bubbles everywhere.  I stood there and almost had a heart attack.  This sort of situation, a year ago, would have meant the demise of party time for Jack.  Without question.  I mean the other moms and I were standing there commenting about how we were getting headaches just watching the kids. 

Jack barely seemed to notice?  OooooKaaaay.  I am not complaining, I was just shocked.  Maybe it was because he was busy chasing around the one little boy in his class who is constantly telling him to get away from him?  Why do kids do this by the way?  It's like watching them beat their heads against a social wall.  I don't think Jack even notices that this little boy is NOT being nice.  He calls him his friend.  Ahhh the insulating blanket of Asperger's.  Sometimes it has it's positives. 

Anyhoo, so glad that he survived the party without a meltdown, major victory. 

Weary Mommy

Yesterday just sucked.  The Valentine's aspects of the day were great, hubs sent flowers, I made him a s'more bouquet, that was very nice.  I took a half day in order to go to both boys' Valentine's Day parties.

Nate's was up first.  He did pretty well with me there other than being velcro boy- gluing himself to me the minute he saw me.  It's hard to see him in that classroom- almost none of the children are talking, there's some signing and a whole lot attempted interpretation.  Love the teacher though.  From the minute I got there Nate was grabbing my face and saying "ma".  And then "come, go".  AKA let's blow this popsicle stand.  Sweet boy.

Then I went to Jack's class party.  It was a mommy nightmare.  I know he was a bit amped up to have me there, I know he was excited to be at the party.  There were 4 other moms there volunteering, and thank God because I was unable to leave Jack's side the entire time.  He was so off task, I had to literally hold his hands to his craft project to help him focus on actually doing it.  He was running everywhere.  One of the hardest things to see was that some of the kids are starting to react negatively to him.  Wanting him to go away, telling him to be quiet.  The minute they realized I was his mom several kids gathered around me and started telling me that they can't get their work done b/c Jack is always interrupting them.  Believe me, I know the feeling guys.  Still very difficult to hear.  I mean, he is frustrating his classmates.  Several of the kids did tell me that they like Jack, because they like to help him.  There was no aid with him, and I have come to the difficult decision that I need to fight harder than I already have.  He needs someone glued to his side, at the very least.

I walked over to his teacher at one point and said, how is he ever going to be able to be in a classroom?  She said, that's not something I have the power to ask, only you can ask that.  Her answer told me everything I needed to know- this is not working.  Tears sprang to my eyes right there in the classroom, although I managed to hold them off, and they're back right now as I think about it.   I am devastated and don't know where to turn.  I spoke with the advocate and she suggested the administration.  I have spoken with the assistant principal and have a meeting with her and the principal next week.  Piece meal is not going to cut it.  A dedicated aid hopefully will, at this moment, after what I observed yesterday, I'm just not sure of anything anymore.

Please say a little prayer for my spirit, I am feeling very very down right now.