Frequent Flyer

Believe it or not, this is not about Jack and airplanes.  Well, it kind of is, since everything is about Jack and airplanes, ha. 

I went in to Jack's school AGAIN today, for another IEP session.  Before I get into that I will say that I volunteered in Jack's classroom yesterday and for once found it to be a fairly pleasant experience.  He had the special educator with him for "workshop" time (which is what I was there for) and she was fantastic with him.  If you are able to keep Jack somewhat on task when mommy is visiting you're doing pretty well.  I was playing a reading game with the kids and she even helped me a bit when a couple of unruly kiddos weren't doing a very good job of listening.  Of course I am afraid to pull out the wicked witch voice with someone else's kid.  Anyway, it was kind of bonding, which is a good thing.

So this morning, the advocate and I met with the full IEP team.  This team included Jack's teacher, the OT, the PT, the speech pathologist, the special educator, the school psychologist, a psychology student, the assistant principle and the school nurse.  Not intimidating at all.  The meeting lasted less than an hour and was really the least complicated one thus far.  It was basically a session devoted to planning Jack's next set of evaluations.  He is due to have them completed before his sixth birthday.  Also, his diagnosis needs to be changed from developmental delay to something more specific at this point.  I came home with loads of paperwork to fill out regarding his behavior and focus.  His teacher will fill out the same.  There are a mind-boggling number of different evaluations to be completed by the various staff members.  Luckily they have 60 days to get it all done.  I anticipate Jack qualifying for a significant increase in his services after this process is completed.  And it feels really good to get it all started.  I feel like I am slowly becoming more familiar with this process and it doesn't hurt that I am getting to know the team.  As I see them with Jack, my confidence in them is growing.  For the moment we seem to be on the same page.

Tomorrow I will be going to yet another meeting.  This one is at the special needs daycare center I have been considering for Nathan for his afternoon care.  I found out that two of his little ECI classmates are already going to this facility after class on the same bus Nate is on, so this is a huge comfort.  That being said, I am feeling very bittersweet at the prospect of having both boys out of the house all day.  I love having Natey nearby, knowing that if he gets a boo boo I can kiss it, or if he is trying to say a new word I will hear it.  It's hard to give that up. And I also have to consider the fact that it's already March.  Even if this center works perfectly for Nate's half days, summer break is right around the corner and then I will need care for Jack as well, and full day care for Nate when he is not in his extended school year program.  There is no way we can afford this center, full-time for both boys.  It would be over $3000 a month.  The center is considered a higher level of care than a typical daycare center as it offers things like social skills groups, speech, and other developmental activities.  So we may be eligible for some type of aid- grants or something.  The director can assist in this process.  Fingers crossed on that front.

So as you can see, I am really bored.  Ha.  I am also a busy little bee locating ipad apps that are appropriate for the boys and trying them out.  Jack and I tried a reading program before bed last night and he rocked it.  I am so excited to have this tool!

Paying It Forward in the Name of Autism

Have you been the recipient of an amazing act of kindness recently??  Our family has.  I posted last week about Jack's school issues and the administration's suggestion that we get him familiar with a keyboard, namely an ipad.  About 30 minutes after I posted about this I received an email from one of my oldest friends, who lives in North Carolina these days.  She said, we have an ipad and we hardly use it.  How about we send it up to you guys?  I was FLOORED.  I don't care how long you have known someone, or how many experiences you have been through together- this is an extraordinary thing to do.  So first of all, I want to say thank you to her, you know who you are :).  This is a tremendous thing that you have done for our family.

One of my favorite bloggers, Lost and Tired (see my blogroll) posted a challenge today about random acts of kindness:
http://lostandtired.com/2013/02/27/pay-it-forward-in-the-name-of-autism-awareness/

I wanted to pass it along to my readers.  I feel the need to be kind, I feel the need to pay this amazing act of generosity forward.  We should all do this every single day- or at least regularly.  I remember one morning I was in the Starbucks drive through (shocker, right?) and I pulled up to pay for my drink- but the person in front of me had paid for it.  So of course I paid for the person behind me's drink.  The cashier smiled at me and said thanks for keeping it going- turns out we had created something like a 20 car chain at this point.  We need more of this in the world.  Have a great day!

The Value of "Special Needs" Friends

Since the boys' diagnoses we have been very lucky in that the people who were really our friends before this have been supportive and we have been able to keep in touch.  My mommy friendships remain intact for the most part.   I can't say that Jack is really "friends" with his playgroup buddies of the past.  He does have a difficult time connecting with kids in the typical way.  He struggles with it, and it can be hard to watch, as I have mentioned in the past.  I have one friend from back in nursing school who makes an effort to have her daughter play with special needs kids- she wants her daughter to be an accepting person.  Granted, my friend is just an extraordinary person herself, but I appreciate her so so much.  She even came to the roar for autism event for Kennedy Krieger with us last year, heck, she suggested it. 

That being said, there is just something about having another special needs family to interact with.  An immediate feeling of acceptance.  There's no need to explain any of your kids' behaviors.  Even if they are different from the other child's, the parents get it.  I also enjoy TACA meetings for this reason- we talk about poop, poop smearing, spitting, biting, hitting, like we're talking about legos.  And I'm down with that. 

We are fortunate to have connected with the family of one of Nate's ABA classmates.  I think the mommies benefit from this more than anyone else, but I know that it does all of us a world of good to feel just a little less alone in this situation.  We went to a birthday party for this family over the weekend- just me and Jack since Nate was sick.  First of all, Jack was enthralled because we were on a military base- he came home and told John he saw soooo many planes all over the place.  Yeah, we didn't see any, but we all know where Jack's mind goes.  He was starstruck at the inspection station.  Anyway, I am always nervous to take Jack to a party- but a bit less so for this one.  I have always appreciated that some of our friends try to accomodate the boys' diets, as I am perfectly willing to bring our own little cooler, and have done so many times at this point.  I didn't need to do this for this party- but on top of that this mom BAKED gluten free cupcakes.  I don't do that!!!!  I go to a bakery. 

And here are the huge signs that your host knows what's up.  You get a message that you can bring your kids whenever (ie, early) in case they need some time to adjust to their surroundings.  No one bats an eye when, because he is excited, your kid starts flapping his arms.  The hosts ask if Jack will be ok with it before they blow up a big bounce house in the living room (he was thrilled).  Oh and here's a biggie, the host mom smiles like it's endearing when your kid screams because she uses the flash on her camera and tells her to stop that.  And you know that she is truly not annoyed.  Jack felt comfortable there- I could tell.  Who knows, maybe he was reacting to my lack of tension.  He played with other kids, he interacted with the adults (and demonstrated his vast knowledge of WWII aircraft), he ate an astounding number of rice krispie treats.  He did a pretty good job over all- no meltdowns, always a plus.  So this is my thank you to that family- for being so thoughtful and considerate.  It really did make a difference and Jack had a great time.  And what a sweet and polite birthday girl too!

Crabby McCraberson

This post is me.  Complaining.  So if you don't want to hear it....stop. here. 

The schedule is getting kinda cramped again.  I did it to myself of course, but with the best of intentions.  I am still doing the massage for both boys, and although I can't say that I have seen major improvements at this point (other than both boys tolerating more touch), I enjoy doing it.  I enjoy the time with each child.  And about 2 weeks ago we started the OT listening program with Jack:
http://www.vitallinks.net/

It involves him listening to music twice a day for about 30 minutes each time.  I know this doesn't necessarily sound like it should take that much of my time, but we have to use these specific headphones and of course these headphones do not want to stay on the boy's head.  I have wrapped the top in trainer's tape and am now using a headband to hold them on, but I basically have to sit there and watch him the whole time in order to make sure he doesn't take them off. 

Both boys are getting the shots 3x a week at this point.  On the bright side, Jack no longer cries.  He screams at me to stop, giggles, and then goes back to what he was doing.  I think this is progress?  The new supplements just keep coming and coming.  I have been to Jack's school for a meeting every week for basically the past 4 weeks.  He keeps hurting himself at school- the school nurse and I are now on a first name basis.  I am going in for another meeting on Thursday, and supposed to volunteer on Wednesday.  Been home with a sick Natey the past 2 days- although this did give me a chance to try out my new steam mop.  I know, dare to dream!

I am constantly overwhelmed at home, overwhelmed to the point where sometimes all I can do is just sit there and think about everything I need to do.  This is not especially productive.

I guess I am saying that I am feeling that all too familiar drowning feeling that many moms experience.  I need a vacation.  I need a break.  A real one.  Not two hours at Target, or a TACA meeting without the kids.  Not the planned excursion for my birthday- a TACA conference with the husband.  I need an umbrella drink, a masseuse, a beach.  I actually did have a half hour massage last Saturday- wanna know what the masseuse said???? I don't think I can really help you in this short a period of time, this is really bad.  After the thirty minutes, she poured some icy hot on my back and we called it a day.  Actually helped quite a lot, I recommend trying it if you haven't before.  And here I thought it was only good for shin splints. 

Back to this whole vacation "idea".  Who gives the shots when I run away from home?  Who knows how to give this massage?  It's only going to get worse in the next few weeks, as our sitter is leaving us.  How dare she move to PA to be with her own grandkids???  So now I have a daycare search to conduct, which is one of my least favorite activities. 

OK, I'm done :-)

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.

Why Not?

I mentioned in my last post that I am trying some new interventions with the boys.  Before I tell you about our latest direction I feel the need to clarify my feelings on being an "autism mommy".  There are parents of children with autism that feel that their child's autism is a "gift".  I am not now nor will I ever be one of those parents.  I would never choose to see my boys struggle in the ways that they do.  Yes they have taught me much about life, and yes I am a much stronger person for having been their mommy.  I would never want these things over seeing my children thrive.  So I will continue to try new things- again and again and again.  Some of the benefits may not be evident to others- I am here to tell you that the baby steps matter. 

So on that note...I received a book in the mail from my aunt last week.  I have been continually amazed by the amount of support our family has received, and it has come from unexpected sources as well.  My aunt lives far away, we don't see her very often, and yet she has become one of my biggest cheerleaders in this experience and I was very touched to receive this gift.  The book focuses on Chinese Medicine.  It relates to the same principles applied in interventions such as acupuncture and acupressure.  As you may well know, these techniques have proven effective for many ailments, so much so that they are often covered by insurance. 

The book is about an intervention called Qigong massage- specifically QST or Qigong Sensory Training.  To explain a little further I will give you some brief information from the book:

Chinese medicine in general is based on the electromagnetic field around each person's body, and the circulation from the top of our head down the outside of our body to our hands and our feet and then back up inside the body to our heads again.  In any situation that involves illness or pain, Chinese medicine makes the diagnosis of a block in energy and circulation and the treatment will open up the block and restore circulation.  The theory is that in autism there are many blocks in the energy channels, especially in the areas where the senses open to the world around us.  This prevents the senses from working properly and the child can't receive accurate information about the world around them.  The massage is meant to remove these blocks and fill these channels.  The person giving the massage works from the top of the head to the toes-  to follow the proper flow of energy in the body. 

So this was very intriguing to me.  I took several alternative medicine classes in nursing school including a therapeutic touch class.  It served me well as an oncology nurse- I saw the effects and I believe in them.  I have also used the wilbarger brushing protocol on the boys- which was recommended by their OT and seen the effects of this.  To me, all of this must be interrelated, so I had no problem accepting this theory.  Also, I am inclined to try interventions that "do no harm".  Things like dietary changes, vitamins, etc.  Things with very limited negative effects.  I think massage counts? 

What's the worst that could happen in this situation?  The protocol calls for me to give each child the massage daily for 5 months.  It takes approximately 15-30 minutes for each child depending on their reactions.  OK, so even if it does nothing for their autism, it's one on one time each day with each child, it's eye contact, it's loving touch.  So worst case scenario- we bond even more?  I can handle that.

The book describes various reactions that indicate blockages and/or lack of energy in a particular area.  The child will shy away if there is a blockage, in which case I should use lighter, quicker touch.  If the area is not blocked but lacks energy, the child will put their hands over mine and push, aka, wanting me to hold more pressure in this area.  Got it.

So we started 3 days ago.  I was told to expect resistance at first, and I have definitely had some- I mean they have to stay somewhat still, and for Nate especially this is a challenge.  That being said, BOTH boys have grabbed my hands and held them to a particular area already- Jack to the top of his head and his ears, Nate to his ears.  Giggling also indicates lack of energy- Nate laughs like a fool when I massage his pinky finger.  Crying indicates a block- my ticklish little Nate sobs when I massage his toes.  It's just astounding.  Also, today, a mere three days in, Jack came running upstairs at bedtime, upset to have to turn off a movie, and he yelled "Mom, I need my massage NOW".  Really?  We weren't supposed to have that reaction for several weeks! 

So in any case, I am giving it the old college try.  Clear benefits exist- a stronger connection with my boys and them becoming less sensitive to touch in areas like their ears.  And of course massage is relaxing- both boys have almost fallen asleep already.  If the other effects of increased concentration, better sleep and improved speech occur, it will just be icing on the cake.  So really, why not?

Good Weekend for Mr. Jack

Jack was faced with a couple of challenges for him this weekend.  Nothing huge or traumatic, just stuff that I worry about.  For instance, his grammy and grandad took him to the orchestra on Saturday.  It was a children's performance, but let's face it, it was live music and this is my kid with major auditory sensitivities.  He begged not to go almost all morning and then went like it was nothing when my parents came to pick him up- my mom and I both suspect it was the influence of grandad, who he really looks up to.  My mom and dad say he did "well" although he was chatty- which is just to be expected.  And I take the fact that they didn't come back early as an extremely good sign.

I got some much needed and appreciated respite this morning in the form of coffee with a close friend who I have been missing lots.  Two hours of conversation later I think we are just about caught up.  :) 

I really wanted to spend some quality one on one time with Jack today.  After this past week of working on the IEP and focusing on his issues, I needed to just be with my little boy and remember how awesome he is.  It was a simple afternoon really- we spent about an hour and a half at a local playground- almost the whole time was playing tag- mommy is beat.  But he also showed interest in climbing a tree which is a first for him.  He used to be nervous about even the jungle gym, so this was pretty cool- he didn't get far, but he wanted to try again and again...

I was really worried about it but wanted to take Jack to a local art show called "Art from the Heart".  It was put on by an amazing local foundation in honor of a girl who passed away from cancer at the age of 13- the foundation was founded by her younger sister (how inspiring is that??).  The art was all created by children at the Johns Hopkins Children Center, except for one small exhibit which was created by kids at the Harbor School, which is a local private school for children on the spectrum.  Jack and I have been talking about people getting sick and he has been asking many questions.  I thought this would be a good way to help him see the human side of all of this- he has the tendency to get caught up in the technicalities of things (no surprise there) but he has such a wonderful heart- sometimes he just needs a little reminder (just like the rest of us).  I confess that I am always nervous about taking him to things like this- didn't know if other kids would be there, didn't know if it would be quiet and subdued or a more laid back atmosphere.  Thank God it was option 2.  Jack looked at the art with me for about 5 minutes and then found out that one of his "old" preschool buddies was playing in the gym of the facility- he went and played with the kids for awhile- fine with mommy- another big positive- social stuff!  The exhibit was so very touching and the art was beautiful.  I am so glad that after texting and emailing various people to ask their opinions (thank you) I took the plunge with him.  Very worthwhile cause.

We then just ran a few routine errands.  Doesn't sound exciting, but when Jack waits in line nicely with mommy it is a major victory.  We picked up some valentines (airplane) that we had printed up and got some envelopes.  Two stores.  He did a great job.  We went to Chipotle for dinner and mommy let him cheat and have a tortilla.  He was a little gentleman.  Other than his funny expression when he tried a pinto bean, haha.

When we got home I got his valentines ready and wrote all of his classmates on the envelopes in highlighter.  Jack sat down with me and wrote every single name (tracing) with very little protest.

I know this all probably sounds a bit mundane, but really, this was a fantastic day.  Jack did a great job with transitions, unfamiliar places, and many new people.  The only time I saw some sensory stuff is when they turned the big lights on in the gym and he ran out of the room as fast as possible.  No biggie.

I am working on a few new interventions for the boys- non medication related.  One we started yesterday officially and one will begin later this week (for Jack only).  Will elaborate on these in another post, but let me just say that I am really thinking outside the box these days.  Wish me luck with that!

Mixed Emotions

So how is one supposed to feel after a meeting like the one I had today?  I have said it before and I will say it again- it is really hard to sit in a room of people and listen to them list all of your child's deficits.  And it will never never get easier.  After almost 3 years of this with Jack I have come to realize that.  So this afternoon was really rough- I always come out of these meetings feeling like I've either been beaten up or run about 2 miles more than I am capable of.  Just exhausted, emotionally and physically.  And this IEP meeting was almost two and a half hours.  Jack's difficulties were laid out before me- his lack of focus, inability to stay on task, the fact that he is slowly falling behind academically, his social awkwardness, his fine motor delay, his lack of motivation to complete tasks.  This is the bad part.

Here is the good....

For a mom who has known these things about her child for a long, long time, hearing professionals not only acknowledge all of this, but commend me for getting him this far is an enormous relief.  This makes me feel a little guilty, but....think of it this way.  What if you knew something was going on with your child?  But it was your first child, and those around you were telling you things like he's just really smart (true), he's very spirited (true), let him cry it out, he can't do it forever (wanna bet?), just take the airplanes away (ha)?  I remember asking his first preschool teacher if she noticed anything different about Jack. She said no.  Clearly she wasn't paying attention.  His next teacher noticed and finally I had a bit of validation.  Even so, I have never felt like his "team" has taken his issues seriously enough.  With Nate it's clear- he's not speaking, he's constantly stimming, he doesn't respond to his name.  With Jack it was never like that.  But I was the one trying to help him focus on crafts, games, puzzles, etc.  He would listen to books (about his areas of interest) for hours if we would keep going.  All this other stuff- he screamed when I tried to do these things with him.  Every single thing we ask Jack to do is a huge battle and it always had been- but he is charming and smart (and precious, sweet, and perfect), and he could mask much of this, even in a half day program.  While at home, life was basically a constant struggle to prevent or stop the tantrums.   Who am I kidding, it still is.   In Pre-K I felt like they were acknowledging the issues quite a bit more, but it felt like they were saying "send him on to kindergarten, let's just see what he does."

Well here we are.  I told the team today that I have been waiting for this moment for a long time.  I knew it was coming and wondered how long it would take.  Turns out, about 5 months in a full day setting.  Today the entire team agreed that Jack needs additional adult support for language arts, morning work, social studies, science, and math.  In case you're keeping score- that's all academic areas.  Upon hearing this, I burst into tears- maybe the team thought I was sad, but I wasn't- I was just so relieved.  I looked over and his teacher was crying too.  No joke.  You could tell she was relating to our situation- once a special needs mom, always a special needs mom.  Thus far Jack has been getting assistance in language arts only.  He will now be pulled to a small group for reading, to a room with an aid for math, the special educator will be with him for social studies/science and the aid will be with him for language arts and likely morning work as well.  This feels like a bit of a piecemeal solution, but it is a solution nonetheless.  And he has his assessments coming, which will likely qualify him for further services.  All of these additions are coming before that even happens, which gives me great hope for this school. 

The advocate?  I have a whole new perspective.  I was still kind of wondering what exactly she would do.  Here are the things I observed:
1.  Her being the "nitpicker" about language and inclusions in the documentation allowed me to be able to discuss the big picture issues with the team without being the "bad guy"
2.  She knows how things need to be phrased to make sure that they are done, she knows to ask them if they require any further documentation in order to get funding for Jack's needs
3. She caught something BIG today.  When I first discussed his IEP with her, I told her my concerns, which I blogged about last week.  That they were only allotting 30 min/day of special ed services.  I told her I felt that he needed more time with an aid and she said that that was irrelevant to the special ed services section of the IEP.  I was confused but figured I could ask about this further today.  Well, in the meeting, she inquired about what was being done during these 30 minutes each day.  The educator stated that this was the time the aid is with Jack.  Ummmm.....turns out this was a BIG no no.  The special educator has NOT been working with Jack directly, basically at all.  All of his special ed time has been with the aid, and the aid time should be separate from the special ed time, which is the time when the special ed TEACHER should either be coming into the classroom or pulling Jack out.  So this was documented, and now the educator will be spending this time one on one with Jack on a daily basis AND the aid will be coming in.  I NEVER would have known to call them out on that.  In my eyes, he was getting jipped. 

So I am glad I hired the advocate.  I am glad that the team is acknowledging the full extent of Jack's limitations for the first time.  While it's hard to hear, in Jack's case it is way overdue.  I am hoping that now that the academic team has seen this, and they agree that he needs more help, we are on the right path.  Next meeting is Feb. 28th, to finalize the assessment plan.

Big Day

Today is Jack's IEP meeting.  For the first time, I am not going alone- an advocate is coming with me.  Unlike before other IEP meetings several drafts have already gone back and forth, information from Jack's private providers has been shared and I have provided a detailed parental input document.

I feel like a little kid going to the principal's office.  I need to shake this feeling off and go in with the attitude that the school has a responsibility to provide these things for my child.  I am glad to have a teammate, I am glad that I feel prepared.  I have examples of Jack's work and I have my boxing gloves tied around my neck- will not put them on unless necessary.  I want to have a good working relationship with these professionals as we have a long road ahead of us.  I feel as though this meeting will be very telling- will they compromise with us?  Will they take my concerns into consideration?  How they react today will tell me a lot about what the future holds. 

So please wish me luck.  Deep cleansing breaths. 

You Need More "you" Time

HA!  I say hahahahahahaha.  This is what our therapist told me this evening.  Again- ha. 

As with many many mommies out there, my "me" time is THERAPY, or driving there or better yet the dentist!  How many of us have fallen asleep in the dentist's chair (and I mean without sedation)?   I had a run "scheduled" today.  Really I did.  However, Nate's bus was stuck in traffic and couldn't get to him this morning, so after Jack's bus picked him up at 8:50 I had to drive Nate to school and get him there by 9- at least 5 miles away during rush hour.  Did I mention that I have never dropped Nate off at his "new" school before?  If you were there this morning I was that idiot mom that pulled into the bus area- yes that was me.  Every elementary school has a very "strict" drop off procedure, and just to keep it interesting each one is very very different.  After having my boys in 4 elementary schools already, believe me, I am aware.  This, however, did not prevent me from making a complete a** of myself.  So idiot mommy had to back down the bus lane and pull in the correct way, only to be told that ECI kids have to be walked in when they are driven.  Awesome.  So I pulled through that lane and parked, and took Nate to his class, and had a 20 minute conversation with his teacher.  And pulled Nate off my leg.  The victory- he didn't cry when I left. 

So I guess the frantic drive home (or as I prefer to think of it- to work) was my me time today.  Today was the only "normal" day this week- aka no run. 

I think it's bed time- hey maybe that can be my "me" time....

The Woman's Got Game!

OK, now I have to tell you, when we left Nate's ABA program for the ECI program the 3 year olds graduate to, I was skeptical.  He was one on one with an aid in ABA, and we had Miss Kristen who came out once a month.  And we loved us some Miss Kristen!

So when Miss Gwen knocked on our door for the first time....well, I was having the usual issues with change.  Miss Gwen comes an hour a week on Mondays.  It is almost becoming a spectator sport among those who love Nathan.  My mom comes most Mondays, and we say that it's because we all want to learn Gwen's techniques, but honestly, as my mom said today, it gives us all such hope. 

What this woman can get Nathan to do!!!!!  I mean first of all, she has him sitting in his little cube chair for an HOUR.  And focusing pretty much the whole time.  She does give him some short down periods, but for the most part it's work work work.

When I say work, what I actually mean is "play" for neurotypical kids.  She gets him to play with toys appropriately.  Today it was race cars going down a ramp (not to brag, but I can get him to do this too, lol), doing a 10 piece puzzle, building a block tower repeatedly and not only that but tricking him into wanting to do it so badly that he had to strain and reach to get the blocks- which he did.  They worked on color sorting, they played peekaboo. 

And this is the one that kills me- she got him interested in bubbles.  He has been ho hum about them forever.  In case you didn't know, bubbles are typically one of the most motivating activities for all kids, but especially kids on the spectrum.  Without this tool, it's kinda like what do I use as incentive now?  She was blowing the bubbles one at a time and he was reaching to pop them.  She repeatedly put the bubbles away- he asked for more.  We have been working on a communication technique with Nate- it's so simple that I don't even really understand why it works.  I just know we have been using it at mealtime, and Gwen used it incredibly effectively today.  It is literally a laminated sheet of paper with three dots on it.  The idea is that when Nate wants something, you take his finger and touch each dot I-want-cup.  The goal is to get him touching each dot when he wants something and eventually filling in the words that go along with it.  Well he has "I want" down pat.  We are working on the nouns, he has a few- like cup, pretzel, chip, and if that isn't what he wants he usually gets frustrated and just starts pointing in the direction of the kitchen saying "that".  What a huge improvement this is!  So today with the bubbles, when Gwen started putting them away, he would say "I want", but not be able to fill in "bubbles".  Eventually he started looking at her and pointing to each of the three dots.  He knew that he had to touch ALL THREE.  That "I want" wasn't adequate.  So he substituted the dot for the word, and when he did so, she gave him the bubbles, and repeated over and over "I want bubbles".  The hope is that he will soon replace the dot with the word.  But it's amazing to have him doing that much.  Every little step is just so so huge.  I can't emphasize this enough to parents of neurotypical kids.  I remember how amazed I was when Jack was developing speech (very very very quickly).  I can't express how hard it is to watch your child struggle so much with communication- every time we jump even the smallest hurdle- it feels like I just WON a marathon. 

And you can tell Miss Gwen feels the same about her "students".  She came in today a little teary saying that another client had his/her first meaningful speech in 2 years during their session today.  Can't. even. imagine.  Miss Gwen does have one magical tool- the cube seat with a desk contraption that goes across it.  Basically Nate is a captive audience.  Starting to think I need to get me one of those!  Of course, I'm pretty sure the desk isn't magical, Gwen is just amazing.

More Than Words

You are looking at a graduate!  Of the Hanen More Than Words program!  A little refresher on what that is:

http://www.hanen.org/hanen-programs/programs-for-parents/more-than-words-parent-program.aspx

More Than Words^® — The Hanen Program^® for Parents of Children With Autism Spectrum Disorder

As a parent, you know how challenging it can be for your child with Autism Spectrum Disorder to interact meaningfully with others and connect with the world around him.
The More Than Words Program was designed specifically for parents of children ages 5 and under on the autism spectrum. Addressing the unique needs of these children, the program provides parents with the tools, strategies and support they need to help their children reach their full communication potential.
More Than Words does this by empowering you to help your child reach the following three goals:

1. Improved social skills
2. The ability to engage in back-and-forth interactions
3. Improved understanding of language

I have been attending this class I think since early October?  First, there are many people who have had to bend over backwards to help me make this happen- Rhonda my amazing coworker and one of my closest friends, thank you so so much for covering my cases while I took a half day every Friday!  And although she doesn't read I'm pretty sure, I need to thank my boss Val for her flexibility in letting me take my vacation time in a rather nontraditional manner.  And my mama- thank you for getting Jack off of the bus most weeks since I couldn't get home in time- once again you came to the rescue. 

Has Nathan made tremendous progress through this program?  I don't really know how to answer that.  He has made progress, yes, no question.  But I think that while this program definitely helped him, it has helped me even more.  To understand Nathan.  He may not be talking very much at this point but he is definitely communicating!  It's almost like this class has helped me interpret his way of communicating.  And it also helped me to accept where he is, and anticipate what will come next.  I understand more thoroughly now that I NEED to invade Nathan's private world.  He cannot be allowed to stay there- basically I need to get in his face, force him to interact with me.  Because he would be happy playing with a ribbon all day.  So I am figuring out how to pull more out of him.  And that is priceless.

This class has also served as a support system in many ways- parents comparing and sharing their experiences, venting about frustrations and at times sharing sadness.  It has been through this class that I have come to realize that while Nathan's "play" is not "typical", he is not the only child that loves to play with tissues, ribbons, and leaves.  He is not the only child who loves to just run laps...and laps...and laps.  These behaviors are actually pretty darn common in kids on the spectrum.  I think I knew this in theory before the class, but being around other real families having similar experiences has been very helpful.  I hope and pray that I am able to keep in touch with people I really connected with- I am actually not too worried about that.  Think it's a pretty sure thing- we need each other.  Good autism mommy friends are hard to find  :-)