Check off another one, or two, maybe three...

Got the bag today. It's absolutely beautiful! Thanks again Gwen!

Another link I want to throw out there is this extremely touching speech that Niksmom posted. Here is the transcript if you don't have time to watch the video, though the video is well worth the watch.

Also, thanks Karen for my award. I promise I will get to passing it on asap...

Now for that long laundry list of things I need to journal about....

Let's talk about the TEIS meet since I will be meeting with The Teacher tomorrow. Remember this conversation? and then this victory? Well, I met with the TEIS lady on the 11th (2 Mondays ago) and she interviewed me, a pretty standardized interview. Based on the results she agreed that she should send someone to the house to do an evaluation. I got a rush on the appointment because The Younger is having his Trigger Thumb annihilated on March 8th so we had to have it set before then (it was changed from Feb 15th to March because The AP has gone back to Brazil for 2 weeks to visit and renew her license and visa. Hey, I got to check off another one on my list! "The AP has left the building.") Well, this is the rule. He must be 25% delayed in 2 areas of development OR 40% delayed in 1 area in order to receive services from them. When i first heard that I got a little panicky and started to doubt myself and the need to actually have him evaluated. But the lady reassured me again that I was doing the best thing to get him checked out.

What surprised me was that from her interview, she found 2 areas of delay. I was pretty shocked because neither one of them was sensory processing - which in all fairness was not really a category. But he had delays in communication and fine motor skills. If you know my child, this was a huge shock to me. It must have shown on my face because she immediately started to explain why the results turned up that way. It is the fact that she doesn't form proper phrases until he is repeating a phrase he has already learned and that he tends to perserverate when he is anxious, hurt, or scared. A popular phrase is "I want mommy." Now to someone outside of our family that appears very normal, but he will continue to say this even when I'm clearly in site or even holding and comforting him. Hopefully that is just a phase.

(By the way, The Elder was jamming with some complete, sensible sentences, both questions, statements, and responses to questions....he got his IEP interim report today and it was the first grading period that he showed improvement!! He has already met the majority of his goals all in one interim!! And it only took 5 interim periods!)

The second delay was in fine motor which really threw me off. Mainly because it was his motor skills that pretty much sealed the deal for us to realize that The Elder was delayed in his motor skills - because The Younger was running circles around him, literally and figuratively, for example with feeding himself, opening water bottles, etc. Her explanation was not that he couldn't color, draw, cut, etc, but that he uses his fine motor skills inappropriately. He will break every crayon and peel the paper off of them, but won't color with them. He will take apart pens, flashlights, remote controls, and anything that he thinks he can take apart and sometimes successfully put them back together. He will crack open pistachios and mussels on the shell even though the taste of them repulses him. He just wants to open them for us to eat.

So once she explained all that I sat there with a "Hmmm!" look on my face. Not sure if I had caught on to any of that. And I was supposed to be paying attention! The only things that really got my attention was his anxiety and sensory issues. So we have his evaluation scheduled next week, thanks to the Trigger Thumb surgery. Else it might have been a month!

Would really like other people's input on this or their experience. I don't think he has ASD. I have another meeting with The Teacher tomorrow.

-------------------------------------------

The Need for Routine

There were actually a whole series of these but I could never get Picasa to upload them all. (Note to self: See your C: drive for the rest of these videos...)

If you click on the link above you will see a mighty hilarious show. What you would have gathered from the series of videos is that The Elder had created a little routine to the video. In the one video here it looks like just random "dancing" but it actually was a rather evolved routine. He even told me later, "when the pink lights come, I do this." and he struck a pose (the one where he kinds looks like superman about to take off). It was adorable. In each video there was an new step added to the routine somewhere in there. My favorite? The Jazz Hands (which actually looked like he was waving good-bye).

The more intriguing fact of this event, was that music video he was dancing to was on an informational DVD that directors receive early for the upcoming product launch. We are coming out with a very cool customizable compact (not trying to give myself a plug here but it really adds to the hilarity of this story) with interchangeable products. I guess the mechanical nature of the commercial really fascinated him. He kept telling me that he wanted one. Well, I got a free one when i was in Houston and he stole it from me!!! I gotta figure out how to get that back!

In previous videos if I can get The Hub to post it, you can see The Younger playing his "guitar" using a DVD. It is pretty funny. He said, "I play 'tar.....Daddy play cheese." He was using his camera to video it all. Get it? camera? cheese? Har har har!!

-------------------------------------------

Saw The Super Doc again today solo. I totally love her. How could I be so incredibly blessed to have resources in my life that I click with and truly have my best interest at heart. Keep in mind she is The Hub's Doc, but she wants to make sure that I am sane! I love it! Well, I'm one step closer to trying some treatment for ADHD. Sounds ridiculous to some but I am of the thought if I don't try it, I will never know if I need it or can live without it. So I have about a week until I see the Drug Doc.

Sick but productive...

OK, I got my share of the bug... Getting over it as we speak but still haven't had anything to eat in over 24 hours. Almost 30 hours.

But the good news is that before I got sick sick yesterday I was able to get the TEIS referral for The Younger. The Teacher had coached me on what to say when I asked for the referral. Seeing that The Younger's fine motor skills are that of an 8 year old, she said that just asking for an OT evaluation wouldn't suffice, because he would pass the fine motor skills testing with flying colors. Instead she suggested I use words like desensitizing, and higher than normal anxiety, even using the word "daredevil." One thing that I thought to add on my own was the fact that he picks at his scabs and lips until they bleed. I got a good reaction out of them with that one. My final statement included something like, "His brother has Asperger's so we were told to lay low as he might be learning these behaviors but when I was seeing a different kind of sensory processing in him, and the increase in anxiety, I began to worry." Her immediate reaction was "Yes we can do the referral and you are absolutely doing the right thing."

That made me feel so good. I guess because I wasn't going to be a warrior about this but knew that if he could get into OT it would be great, but that if he didn't, it wouldn't be the end of the world, especially since we have The Super Doc and The Teacher to kind of give us advice along the way, not to mention the experience we have with The Elder. But to have someone else acknowledge that you are doing the right thing for your child and it involves getting him help (state funded help for that matter), it really is a pat on the back. It makes me grateful for not waiting because he will be 3 later this year and would be "too old" for TEIS. So how blessed am I to have people in my life who are bringing this to my attention before I missed the boat?? Thank goodness for people who are teaching me to be a warrior instead of succumbing to complacency. Mandolin Mom taught me a phrase today that I'm excited about using..."Well, this is unacceptable." Scares me a little, but I'll have to put on my big girl panties on one of these days because my boys need me to be a warrior for them. I won't always have The Teacher in my court...

Also yesterday before the major sickies I was able to write this letter:

February 4, 2008

To Whom it May Concern:

This is in response to the letter asking parental feedback regarding the upcoming year. One of the things that pleases me the most about the current program that my child is in, is that not only is he in a structured setting but he is also learning. He has made more progress in the last 4 months than he has with OT and ST alone. At the previous 4 preschools that he attended, the structure was much looser and the agenda was based on the typical children and left no room for dealing with sensory issues, leaving him misunderstood and being asked to leave each program. The program at KES has teachers and aides who not only understand how to handle the autism, but also is firm in what my child needs in order to "survive" kindergarten and dedicated to working with the parents to help in transitions.

My biggest fear for the upcoming year is that my only 3 options would be:

• Send him to Regular Ed Kindergarten at a very young age (DOB 7/08/03) without any resources.
• Send him to private PreK, the very same situation as the previous 4 schools who could not handle him.
• Keep him home which would lack the proper structure he needs to prepare him for Kindergarten.

My suggestion would be having a transition class that is structured just like Kindergarten. He would attend the same hours he would as if he were in Kindergarten, 5 days a week. The only way we know how he will handle the transition of kindergarten is to simulate it as closely as possible. This includes perhaps having a "reverse" inclusion setup where typical children would be in the classroom, but at an even ratio, or 2:1 ratio of Asperger children to typical children. I think doing it this way will ease the transition as my child relates to typical children at a slower pace, rather than bombarding him with 20 typical children at one time AND expecting him to perform his studies. Not only might that cause problems for the teacher staff, but might negatively affect the other children's learning, and negatively affect my son's self-esteem and confidence.

I really hope that this is seriously considered. As of right now, my child does not have an option that is in his best interest. I do not want to lose the progress that you all have worked so hard to make with him during this year. Please feel free to contact me if you need any more clarifications or additional input.

Thanks,

Lastly, I got a solo session with The Super Doc today. It was good. I guess I'll leave it at that. She does a good job of making me feel like I'm not a screw up!

OT results

We didn't get the OT services through the school system. I think I'm ok with it because he does get related services through his curriculum like for fine motor and crossing the midline and sensory activities. The OT said she evaluated him twice and he made a marked improvement between the two evaluations. I must say I agree with her that he has improved but not to the extend that she is describing. For example, the buttons. Why just THAT morning he was freaking out because I was wearing PJs with buttons on them, that he was too distracted to brush his teeth and then when I took over he grimaced and pulled away from me. The OT believes he has behavioral issues outside of sensory processing. The Teacher believes that he must have constant intellectual stimulation or he reverts to his "sensory" ways. We decided that he "performs" differently under the structured environment of school versus the unstructureness of home and church. I can still request another evaluation in the future and I still have gymnastics as an option for now if we choose to pay for it (that's the real key I guess).

Kindergarten was the other issue that arose. The Assistant Principal (I love her) said that he will go next year because he will be 5 BUT it will be an inclusion class with no resource class/CDC available to him because of some rule-changing. I'll have to learn more about that. So if I'm not ready for him to go to Kindergarten then I'll need to enroll him into a private preschool next year because public preschool will not take him if he is 5. It's scary to think that he will go from a class of 7 kids of his peers (they are all HFA/AS) to an inclusion class of 20 and No Aide (and at a different school because Karns is NOT is our zone). The Regular Ed Teacher was talking about how much he would be expected to do as far as nouns, verbs, sentence structure and story telling. Even The Special Ed Teacher said, that wouldn't be a problem because he's already doing that (me, gushing inside with pride), but his current transition skills are not up to par. So in the next 6 months they will be doing more inclusion with the Regular Preschool "typical" students to help the kids prepare for Kindergarten transition. So we will see. In the meantime I'm going to be trying to reserve him a spot in a new preschool for next year.

Occupational Gymnastics

I visited my friend's girls' gymnastics class yesterday to check it out. The Kiddos were both in gymnastics starting a year ago for about 6 months. I have mixed feelings about our experience then. First, I was the only parent at Mommy and Me class with 2 kids. One that was exhibiting avoidance behaviors and one that felt like he needed to act like his big brother. Second, I think the coach contributed massively to The Elder's first evaluation leading to a misdiagnosis. Well, an UNdiagnosis, which is worse. What really sucked is that I like her and she handled both of them very well and I trusted her because she has private lessons with children with autism and even mentioned to me how The Elder's actions resembled those students of hers. But when we "graduated" to the preschooler class (without Mommies) he did a 180 in the behavior department, which the finger was pointed at me (which is why the psych suggested a parenting therapist for me - pffft!). Never mind that he was in a class with his brother and other children of that age before, and then switched to a class with 4 year olds (The Elder was 3 at the time). Never mind that it was a LOT more structured and not a "free play" session like it was with the toddlers. No, it's my parenting. (But I'm not bitter.)

I digress...

So as I was saying, I went to observe this class and was really impressed with it. The other gym was a competitive gym for gymnastics and cheerleading. They had 2-3 classes going on at the same time in a HUGE open gym (not overstimulating at all - pffft). But this place was a cozy gym with smaller equipment and classical music playing in the background. Very structured and the instructor works with a variety of special needs children. Her class reminded me more of The Elder's occupational therapy sessions than what he was doing in gymnastics. For example, they went from station to station and eventually built up to an obstacle course of 3 stations. Well, that would work on his ability to follow more than 2 directives in a series. One station was the balance beam (vestibular therapy), then it was donkey kicks with a trampoline and they had to recite a letter during each kick which she had laid out for them (lots of good things from that - kinesthetic learning, coordination, um, what else?), then the last station was a low beam where they had to pick up "ice cream" and velcro them on the sides of the beam in different pre-set locations, and then go back and get them and put them back in the "ice cream" bucket. As you can see, I can see this being very very good for The Elder.

But as always, fees are always an issue. She is much less expensive than the other gym so that is a plus, especially for what you get. She is also cheaper per class than our co-pay was when he was having OT. Next Thursday we have a meeting at The Elder's school to discuss the results of his OT evaluation. It is so obvious that he needs it, but I still have that fear that they aren't going to grant him the services. At least I have another option if it turns out he has been "performing" well for the therapist at school.

I wonder if gymnastics is a tax deduction....