The Newest Cullen

Haha, before we get Javi's hair cut, I wanted to try an experiment. I wanted to see if I could get his hair to look like Rob Pattinson's from Twilight. I just love that messy hair look! I don't have photoshop installed on my laptop right now, but when I do, I'll give it that proper blue gray tone. Just for laughs! Javi is a handsome little devil. He makes a good model too. He follows instruction well when it comes to making faces.

Ok, so I've been a little obsessed with Twilight since I finished the saga last week, but this was fun and Javi had a lot of fun with it too ;)

Blue Sky Reserve Field Trip

We had such a great time on our field trip yesterday. This was Javi's first field trip with his new class. We went on a hike at the Blue Sky Nature Preserve. I was still battling my cold, but I didn't want to miss Javi's field trip. I got to meet a lot of the parents of the kids in the class. I also got to know Javi's new classmates a little better. They are all great kids. They are all so loving and accepting. It really makes me wonder why we try to shoe horn kids with ASD to be more "typical". It seems we have a great deal to learn from these kids. I held hands with most of the kids yesterday, many of them hugged me. They are so accepting, even of us new folk. No suspicion, no malice, just wonder and kindness.

I am truly happy that we found such a great placement for Javi. He has made some great friends his first week. He told me that one of the girls in his class, Sydney, is his girlfriend. I asked if she knew that ;) They are really cute together. They shared a bag of apples. Very cute! We love the new teacher Ms. Meghan and her assistants. They are so great with the kids.

Here are the pics of the trip...

Javi's New School

We are very pleased to announced that Javi will be starting school at Garden Road Elementary this Monday! Hooray! I went to check out the placement yesterday. It was so awesome to watch the teacher work with the students, I nearly cried. I just knew that this placement would be great for Javi and that he would be well matched to make friends easily. I knew right away that he would pair particularly well with a couple of the boys and one of the girls. Yep, two girls are in the class!! That is the most Javi has ever had. He will be one of the two third graders in the 2/3 class, but that's fine with Javi. He doesn't care much about the kids ages.

The teacher had already prepared a letter and a social story for Javi, even before we decided. She also had told the students about Javi and they were sooooo excited to have a new friend joining the class.

We are so happy that he will fit in nicely with the kids and that they will mainstream and accommodate Javi's needs.

Poor Javi

Still going through the motions of finding Javi a new placement. I have a meeting with the principal of the prospective new school where I will also get to take a look at how the class is run and meet the teacher. I am hoping that this will be a good placement for Javi, otherwise, I think we may have to go to homeschooling.

Javi has been pretty sick for the last couple days. Today, he had a fever of 103. He has barely gotten out of bed or eaten much for the last two days. As if all the school trauma and turning his whole little world upside down wasn't enough.

I know I was pretty vague at best about what was going on, but Javi has basically been on a behavioral downward spiral at school over the last, well, since the beginning of the year actually. The "experts" kept trying to tell us that he just needed more time to adjust, which clearly wasn't the case. The last straw was the two referrals and an in school suspension with in two weeks time. At that point, we decided enough was enough. I pulled him out of school until we could make other arrangements. It was against their suggestion, but at that point, I was not going to continue to further subject Javi to an environment that clearly isn't right for him. They were just not equipped to handle Javi's needs and they lacked the understanding of ASD to be able to work with him.

We have also taken Javi off the GF part of his diet, for now (maybe we'll try again someday?). It was just making him to angry. He didn't like being different at school or different at home or different from his friends. The anger Javi has been suffering with has just been so overwhelming, that we didn't want to further traumatize him by keeping him on it. He has made it no secret that he doesn't really like being on a diet, but who does? It did help him, but the benefits were outweighed by the anger issues.

We are planning to take Javi to an ASD psychologist to help him work some of the issues he has been having lately. We have seen a glimmer of the old Javi here and there since he started staying home with me last week.

I just wish there was more I could do for him. I wish I had a crystal ball that could tell me exactly what to do to make his life easier or more comfortable.

Well, until tomorrow. Thinking positive and hoping that the class I visit tomorrow will be the right place for him.

Grrr...

Yet another school incident on the Javi front.  Yesterday, Javi came home and reported that the class aide gave him pizza.  Apparently, the class got a treat for turning in their homework consistently and they voted for pizza.  For those of you that don't know, Javi is on the GFCF diet which the school is fully aware of.  Not to mention, Javi said he asked if the pizza was gluten and casein free and they told him no and gave him a slice.  Of course, this is according to Javi, but since he was reluctant to tell me because he was afraid he would get in trouble, I have a harder time believing it didn't happen.  

Sure, accidents happen on the diet, but this seemed to be a blatant disregard for his diet altogether!!  I am waiting to see what his communication log says before going to the principal.  I wanted to get their side of the story first.  

Oh, and surprise surprise!!  Javi had his first meltdown in months the second he walked in the door because he may have lost his jacket.  Full scale, crying, throwing-himself-on-the-floor meltdown.  The evidence is irrefutable that he had pizza, just waiting to hear their explanation. To be continued...

This Little Piggy

This little piggy looks better than it did yesterday!

It isn't slowing me down one bit.  It looks much better by comparison to Mark's toes, after the two times he broke them, one of those times was on our wedding day!  It doesn't feel too bad.  I have stayed loaded up on advil to help with the pain and swelling.  

I have a field trip for Ethan tomorrow to the Children's Museum.  Jamie Poppins, our friend and helper will be coming to watch Kay while we are out.  Straight from the field trip, I will be running to drop Ethan off at home, then whisking off to Javi's continuation IEP, to which I will undoubtably be late for.  I told Javi's dad to start with out me.  I only have 30 minutes between the arrival of the field trip bus and the start of the IEP.  Talk about cutting it close!!  Wish me luck!  With this troop, who has time to slow down?

Faces Of Autism

Jaden, Javi and Ethan are famous ;)  

After we saw our friend Jaden's post on Faces of Autism, we decided to submit Javi and Ethan.  What a wonderful way to promote awareness and also put spotlights on children that are not always recognized.  It's such a positive spin on what may otherwise be considered a devastating diagnosis.  It's a nice way to say to everyone, "Hey, we may have some rough days and we may have to do things a little differently, but these are still very capable and loving individuals with strengths and weaknesses, just like everyone else. " 

When it rains...

It pours!  Wow, can't believe that the weekend is already here.  This week has been such a whirlwind with everything that's gone on this week.

Grandma Audrey is still hanging on.  We can't believe that she has hung on this long with what the doctors and hospice had said on Tuesday.  Bless her heart, just hoping she will remain peaceful and is not in any pain.  Please keep her in your prayers.

Still no resolution with Javi's IEP.  Not that we were expecting one this quickly, but just thought I would update.  We are still planning on contacting the program specialist to see if we can possibly switch schools and have him placed in another NSH class, but we are trying to determine the best and quickest way to get him out of the class with minimal mediation.  As anyone who has dealt with difficult IEP matters knows, you have to be very very careful how you word things.  One wrong move, and mediation can drag out for months.  We are hoping that we can go about it from two angles:  

A) Javi technically lives with his dad now and has for the last year, though we share joint custody.  My address has been listed as his home address since he began school. Previously, there was no real benefit to changing it, since we had been at the same school for three years with out any issues.  The reason we didn't change it last year was because we thought it might be a good thing for Javi.  His current school is one of the newer schools in our district, so it has state of the art facilities, computer labs, classrooms, etc.  

Long story, short, if we were to change the address, that would put him at a different home school and would change the location to the nearest NSH program. So, by default this may change his placement.

B) It's obvious in so many ways that this is a shear mismatch of student to teacher and parent to teacher.  I don't think any mediation will do it at this point.  Javi has been stamped with the "problem child" stamp and frankly, I think any further intervention may make things worse instead of better.  

It was evident in the teacher's note in the communication log today that she was already on the defensive.  She noted that we should try to talk about his day in a more positive way and that we should encourage him to tell us about the good things that happened at school, instead of focusing on the negative.  EXCUSE ME???????  She even went so far as to list questions we could ask him.  I guess she thought we were too ignorant to come up with positive questions on our own.  It's not like Javi gets off the bus and I ask him "Hey, so who was mean to you today?"  or "How many times did you get in trouble today?".  The nerve of her to even suggest that, after most of her commentary in the log has been negative, if any at all, which we have all brought up amongst ourselves on many occasions!!!  Which, BTW, we did nothing to suggest that it was her fault that he was miserable this year.  We just simply said he's unhappy and it's evident in many ways.  He feels like he doesn't have any friends and more often than not, plays by himself because the kids are mean to him.  In what way does that indicate we are pointing the finger?

I was so perturbed by her audacious insinuation that we are somehow spawning negativity and that is what is leading to his inability to be happy in her class.  

Lady, you can candy coat things any way you want, but no amount of focusing on the positive aspects of his day is going to change the fact that he feels like his only friend is someone that he is carrying on imaginary conversations with.  (see previous post)

Javi's stepmom wrote the response to today's communication log.  I knew I was not in the right frame of mind to word things eloquently.  She did a wonderful job of being polite, but it was also to the point.  I am certain, that no matter what we write, she is going to be on the defensive, so I can't wait to read the response.

Our next step in the process will be to contact the two other mothers whose children are in the other NSH program that we want him to transfer to.  We can find out more about the teacher and whether or not the class is full.  Javi was in the same class with these two kids since K, so he will at least feel like he has friends with all these chaotic changes.  Most children have that comfort of having students that they are familiar with, so why isn't it similar for children with ASD who have an even harder time with change?  I am still not seeing the benefit to breaking them up.  They told us that they try not to place all the ASD kids transferring to NSH in the same class.  I don't think there are any studies that show that it hinders growth to have some form of continuity in friendships for kids with ASD, but I am not an expert.  

From there, we will be speaking with the educational consultant provided by the regional center for their input and then contacting the district's program specialist. 

We are hoping to have a resolution before all the holiday breaks begin, since it can be difficult to get anything done during that period, as we have experienced in the past.

Ok, I think this post is slowly becoming a novel, so for those of you that are still hanging in there thanks for reading!!  I will continue to keep you all updated as it unfolds.  Sorry for the ranting, but I tend to get fired up about these subjects, as any mama would.

IEP Warrior

Well, today was Javi's IEP. About the most successful thing I can say about it is that Javi's dad, stepmom, Mark and I agree that the teacher is not a good match for Javi. She doesn't seem to have the knowledge, nor the sensitivity to deal with a child on the spectrum that has sensory seeking behaviors and a tendencies to flap.

Javi is not at all happy in school this year. It is evident in his academics that he is not happy. This is the first time ever that he has not even partially met an academic goal. He managed to meet some of his OT and Speech goals.

Surprise, surprise!! He's had a total academic and social regression. Hmmmm....wonder why?

It's no secret that we haven't cared much for his teacher this year. I am sure that she is fine with her other students, but where Javi is concerned, it just doesn't seem to be a match.

She told us that Javi has a tendency to clap and bother the other students. She said even though they work through this problem over and over again, he just doesn't seem to be making the connection to stop clapping and bothering the other students. Hello? Did I hear that right? To a person with Autism, that is like telling someone to stop blinking because it's bothering people. I wanted to tell her she should attempt to stop breathing during the meeting because it was bothering me. She just doesn't seem to make the connection that it is due to the fact that the part of the brain that controls the nervous system is damaged. So, when certain "emotional" chemicals are released in the brain that cause Javi to be anxious, excited, happy, etc, he flaps, or in Javi's case claps.

We ended the IEP with out signing, since we still have matters to discuss. They are attempting to call the ASD program specialist to consult, but frankly, I don't think it will help. Javi feels as though he has no friends. Today he told me that he didn't cry at school today, which has been a pretty frequent occurrence. So, I was glad to hear that he had a decent day today. He said that he still played alone.

Javi is not typically the type of kid that strives to play alone at school. He will typically at least attempt to engage other students, but now, he just says that he doesn't really try anymore. He just plays alone because the kids are mean. He has been telling me that he talks to a girl on the bus and at lunch. She is a little girl in a wheelchair. We had always thought it was sweet that he thought her wheels were cool and that they had things in common, their love for all things Disney. Apparently, the little girl doesn't speak, so any conversations he is having are not verbal ones. We had such high hopes that he had at least made one friend, but according to the teacher, he doesn't sit near her on the bus or during lunch. When I asked him about it today, he finally told me that she doesn't talk because she has a sore throat. He had told me that she had a sore throat once before, but I assumed it was because she had a traech. 

It's so sad to hear these things about him and to see him in this state. He is typically such a happy kid and a such a sweetie. He has completely changed since the beginning of this year. We thought maybe if we gave it a little time, that he would get used to the routine, and things would get better. It's just not getting any better. I think we are finished being patient.

Next step, I'll be contacting the program specialist to talk to her privately with out the teacher and tell her our feelings about the situation. We have suspected it from the beginning, but didn't want to jump to conclusions with out meeting with the teacher and other therapists. Now, I think we have all the info we need to conclude that it's the class is a mismatch, not just Javi being a bad candidate for this program. Fortunately, there are other classes available for him to go to, so we are hoping it will not be too difficult to switch.

We are hoping that there will be a quick resolution. I refuse to let him go through the year like this. The mama lion will pounce if I have too :)

Ring Ring, Meltdown Crisis Hotline

I was a little alarmed by the phone call I received from Javi's teacher this afternoon.  Apparently, Javi had had one of his 4 alarm fire meltdown's at school today.  We are not totally clear on what caused the meltdown, but it has made us evaluate whether or not Javi was ready for such a huge transition to non-severely handicapped (NSH).  While we are not quite ready to throw in the towel and pull him out of the program, we are going to try to figure out if he is just anxious about the change, or whether he needs more support than they can offer him.

I spoke pretty candidly with the teacher when she called.  She said she felt she could handle his behaviors, but felt that if meltdowns like the one he had today were a regular occurrence, we needed to evaluate whether or not this is the right fit for him.  

I am hoping that this was just a one time incident, since this was a huge change for Javi.  I think it would be a huge change for anyone to be at a new school, new friends, new teacher, new way of doing everything.  I guess we had to expect a little backlash.  

It's hard not to be the rescuer in this situation.  My first instinct was to go and pick him up, take him away from all of it and protect him.  The teacher had said that he calmed down and he was starting to eat his lunch.  She said it would probably be a good idea for him to stay, since he may think that any time he had a big enough meltdown, that he could be rescued.  I agreed with her.  She did a good job working through it, since he manage to clam down.  She said that she would call if he just couldn't handle it and needed to be picked up.  While I don't think that the meltdown had anything to do with him trying to escape anything or because he wanted to see how much he could get away with.  I think he just had reached his limit with the stress of all the changes and this was his way of expressing it.

He did manage to finish out the day and take the bus home.  We talked about what had happened when he got home and how to work through things and tell people when he needs a break when he is feeling frustrated.

I hope he has a better day tomorrow.

For more information on autistic meltdowns, visit this link...I think it's important for people to be aware and understand this is not a behavior that happens as a result of poor parenting or undisciplined children.  They can happen for many reasons.  Change, overstimulation, disappointment, frustration, extreme emotions of any kind can cause a meltdown.

Brotherly Love

Javi was showing Ethan how to play Pokemon when we were walking around
Circuit City today. It was very cute. What a good boy! He even shared
with brother and let him have a turn.

Happy 8th Birthday Javi!!

Glad your party was a success and everyone had fun. Happy 8th
Birthday to my big 3rd grader!!

Wall-E cake

Jav hasn't seen it. He saw part of it, but I didn't finish it until after bedtime, it will be a surprise. He was really excited about it yesterday, that's what it's all about. I love to see his little face light up. He usually starts jumping up and flapping he gets so excited, which is always cool. Today I have to make giant choc chip cookie that will go under Wall-e. Javi hates cake.

SDRC

We are at our psych eval at San Diego Regional Center. Javi has one
every couple of years. Pretty much to see if it's time to cut off his
services. Well, I think he needs them now more than ever, but we'll
see what happens. Javi's sensory needs have been overwhelming lately.
He needs input just about every 5-10 mins as compared to a few months
ago only needing it once an hour. He is showing much more classic
autistic behaviors as he gets older. I am not sure if something
changes in his brain as he ages or if just the demands and
responsibilites change, this is his coping technique. It could be a
combination of the two. I am going to investigate treatment options
for his sensory needs. He already does OT at school and has a sensory
diet, but these days that just isn't enough.

Hope all goes well. Javi just went back for the first part of the
eval. To be continued...

Javi of the Jungle

SD Zoo, originally uploaded by alphastatedotnet.

I just love this picture of Javi. He really enjoyed the Bonobos. We must have watched them for over 30 minutes. It was nice to take a rest. They were really cute. Javi got out his notepad and took his "zoo notes" on the Bonobos. They were wrestling around with each other. I think Javi could really identify with this, since that is pretty much all he does with his brother :)

IEP Season

I have been IEP'n it up having two boy on the spectrum. It's
transition time for both of them. Javi is going in to NSH (non
severely handicaped) and Ethan in to Integrated Preschool (50% typical
kids with less adult to child ratio). This is a big step up for both
of them, in terms of independence. They will both be at a new school
with new classmates and new teachers, so it's a pretty big change.

Yesterday we had Ethan's transition and today is the continuation of
Javi's transition meeting. Hope all goes well!

Shanna Grimes
(Sent from my iPhone)

Javi Hawk

Check out PowerJavi's Blog for some pretty funny pics and video.