Friday, February 20, 2009

What do I do now?!

Just when I thought I was an expert about my son's disorder, I get the shock of my life!!

I have been really busy the past few months gathering as much info as I could about CAS and trying to help my son develop as much speech as possible. Although his first day of Kindergarten is still a little over a year ahead, I am learning that the sooner he develops near normal speech the better the outcome for him and the better chance he has for a good education and "normal" life!

He had his 4th Birthday on the 22nd of January, with a birthday comes his yearly physical, where I addressed my concerns with his possibly having Sensory Processing Disorder (a condition I have suspected for a long time, but had not been "officially" diagnosed) and his Dr. referred us to a Pediatric Neurologist...

I made the appointment with the PN for Tuesday February 17th, and attempted to be as prepared as possible for the day. I have learned, among many other things, that when it comes to dealing with these types of specialists, especially when you are the one inquiring about a "specific" condition, it is best to be prepared with as much knowledge as you can gather, along with very detailed information about your child as to why you are inquiring about it to begin with. I found a really good checklist for SPD (Sensory Processing Disorder; aka Sensory Integration Dysfunction...I will add a link at a later time my laptop is not working too well for this at the moment (: I used a "key" to identify how often if at all my son exhibited each of the characteristics i.e; s= sometimes, o= often, ob= obsessively, *= he did this at a younger age but no longer applies. I believe that having that checklist helped quite a bit with all of the questions the Dr. had for me.

After a very thorough examination and many, many questions....the Dr. agrees that we have a huge problem here, I am NOT exaggerating any of this...I am NOT crazy like so many other people have tried to imply!!! She asks me if anyone has ever mentioned the "A" word to me about him...the A word...HUH...what like a$$ (that was went through my head..LOL) "Autism" she says...okay...I sure wasn't prepared for that one!! She gives him the "official" diagnosis of "Sensory Processing Disorder" and "Autism Spectrum Disorder" aka "PDD-NOS" and says she wants to have a sleep study done on him with a full EEG, as well as a full array of chromosome testing to include a test for Fragile X Syndrome. She wants to see him again in 4 months, and sends us home with a suggestion of buying an over-the-counter med called "Melatonin" to help him sleep better, and a script for clonidine (a med for high blood pressure in adults...but also used for kids who have ASD's or ADD, ADHD) Apparently children on the spectrum quite often have sleep problems, I never knew this, and have been driving myself insane with no sleep chasing after this child at all times of the day and night!!!! :)

Now...on the bright side, I have a new subject to become an expert at :)! This is who he is...always will be, and I love him no matter what...I know everything will be okay, deep down...but I can't shake the fear of the unknown for him!!! He has a very long struggle ahead, but he is a very strong willed little boy, and overall else...he is very, truly loved by all who know him!!!

Wednesday, November 19, 2008

Where did the time go!?

I have not updated in a while now! Sad thing is there hasn't been much to talk about until this week! I have been busy with life in general but definitely nothing to blog about! My birthday is coming up...this Sunday, November 23rd I will be 30 years old!!! I cannot believe I am going to be 30 feels like my 20th birthday just passed!

As if that wasn't enough to make me realize how quickly time goes by...the past few days have been a horrible example of it! Growing up (all of my teen years) there was this group of us that were ALWAYS together. We all had quite a few friends but this small group was my life then...we were all best friends! The group consisted of me, my lil bro Shaun, my best friend (to this day) Katy, Tim, Scott, and the brother's, Gary and Donny!!! What's sad to me, is that I've been thinking about these people a LOT lately because somewhere along the lines I've lost touch with the last three that I mentioned, and I have missed them being in my life...I hear about them and things going on every now and then, but we all have completely different lives now, even so I have and always will care a lot about all of them!

Monday evening I got a call from Katy, who informed me that Donny (the youngest of all of us at 25) had been in a horrible car accident and was killed on impact! His funeral was yesterday. It was an extremely hard thing for me to go there and face his brother mostly. I felt guilty about not trying harder to see them before this, I always just assumed they would be there and I would meet up with them eventually when our lives were more in sync with one another...truth is...I lost that chance with Donny and that is really sad to me! Once we were all there, together I felt much better, we grew apart but we all still love each other. We talked a little and exchanged numbers and all I can do now is hope that another 10 years doesn't pass before I talk to them again!

I will be doing my best to stay in touch with them now! It took a dear friend losing his life way too young to make me realize how fast time goes by...don't let the same thing happen to you!

Monday, October 6, 2008

The dog get's it....why doesn't everyone else?!

Our Chihuahua, Cuervo, is a big part of this family. We have had him a little over a year, and he truly believes he is one our children!!! :) He loves the kids, and does all sorts of cool tricks, and he is spoiled rotten let me tell ya!

I just happened to notice that when my son, Munchie, calls for Cuervo, it does NOT sound at all like he is saying his's like--Ahhh...oHHH!!!

Munchie found Cuervo's favorite toy a few minutes ago, and began calling for him...he did not smack his hands together or anything else that would give the impression that he was calling a dog...but wouldn't ya know comes Cuervo running for his boy!!! I realized, it doesn't matter to Cuervo that Munchie doesn't "say" his name, he gets it...he understands the words coming from my severely Apraxic childs mouth in a way that most adult humans do not!!!

For these 2 nothing else matters except for the true love of a little boy and his dog! It was a really neat thing to see! :)

Saturday, October 4, 2008

Quick update!

I just realized it's been a few weeks since my last entry here, and decided I'd better update! :)

I haven't had much goin on since Munchie started school. I did get a new (well, new to me) car last night....I went from a 1989 gray Chevy Celebrity piece of crap to a 1996 Red Pontiac Grand Am!!! I love this car...just have to get all the legal stuff done now, title, inspection, plates...the whole 9 yards!!

I could beat Hector though...he actually bought this car a couple of months ago, and was working on it, it needed a new motor, and he had it at his friends house at the guys shop so that he had better access to the tools he needed! He left the trunk open on it one night, and it rained!!! Pendejo! Now the car smells like an old flooded out, musty basement...and he had better hope that he gets that smell outta there or I will not be driving it! :(

Finances have been crazy lately...for the first time in 3 years we had fallen behind in August, and just got caught up this week! I was kinda freakin out for a minute! But I think it'll be alright now! :)

I have been looking into moving to Mexico, for good! Anybody have any ideas on how to go about getting legal in Mexico if you don't have a job offer, nor will be attending school there. Me and Hector have been living together for 5 years, but are not married, and I have 3 kids whose father's are Mexican Citizens!!! All I can find is for me to go on a tourist visa and return every so often to renew it...I would really like to be able to stay with no problems, and worry that if the economy fails here the way I think it likely would I be to have a tourists visa renewed!!!? Me and Hector have both searching everywhere for info, on Mexico's Government and immigration websites, and found NADA to help me out! So, now I'm asking anyone who might have experience with this to help!!

Thanks ya'all!! :) I'll talk to everyone soon!


Friday, September 19, 2008

LMBO @ Anthony...

I'm gonna make this quick, I just wanted to tell everyone what my oldest son did at the store the other day!

We had gone to Walmart with my best friend who was in town visiting, we had used her van to go and when we were walking out to leave Anthony decided to run up ahead of us all (he has a bad habit of trying to beat everyone at everything!) he hurried to swing open the door, and hopped in as quick as he could, completely ignoring me yelling to him, and gave us all a look like ha-ha I beat ya! What he missed me yelling to him was "Anthony, NO...NOT THAT ONE...Aunt Katy's is the one on the other side!!!!!!" He had jumped into someone elses van!!! LMBO!!!! I will NEVER let him live this one down!:)


After the IEP meeting Munchie was evaluated on Social, Emotional Skills to see if he met the criteria to attend the classes 4 days a week. He had that evaluation a week and a half ago, and this past Wednsday I was told that he does qualify!

This is aweome news for us. It means that he will be getting 4 of the 5 hours of therapy he needs right there in his school. They will be coming to get him and bringing him home each day on the bus. He will be in a school type setting, prepearing him for the real thing, getting him used to being around his peers, and helping him to detatch from me and his dad!

Munchie is very upset about the whole thing, he is NOT at all willing to get go and I know it is going to be a huge struggle for at least the first few weeks! It's okay though, I believe that in the long run this is going to help all of us out tremendously! :)

I hope to talk to all of you soon! Where is everyone?! I miss ya'all! :) ~Jenn

Friday, September 5, 2008

IEP Meeting Update...

Today was the day! The dreaded IEP meeting for Munchie! My stomach was in knots all morning before I got there...I was feeling very intimidated having to present myself and speak in front of all of these was finally over!

I walked away feeling pretty good though, it went much better than I had anticipated! I truly believed I was going to have to battle my way through all of this, and for the most part I found that they agreed with me on almost every aspect of my concerns! :)

Next Wednsday, when Munchie would normally be receiving therapy, they will be evaluating him for Social-Emotional skills...due to his melt down the other day, they think he may need more opportunity to be involved with some other kids his age. If this evaluation goes as planned and we get the results we are expecting, he will qualify for 4 days a week in the classroom...which at first I was concerned about simply because I thought that if we did that, he would only receive group therapy, which is NOT what you want for a child with CAS! After questioning them on this I was relieved to hear that instead he would actually be removed from the classroom for an hour each day for indivualized 1 on 1 therapy with the SLP!!! That means that, out of the 5 hours a week he needs, he would get 4 of them right here, close to home, and I would only need to take him to the other SLP (45 minutes away from us) once a week!!!!!!! :)

I also mentioned the fact that I felt it was necessary that I be allowed to sit in on the sessions, at least some of them! Patty, the SLP said that she agreed, and that from now on I will be in there with them! I had printed out a lot of info I got from the Apraxia Kids website specifically for SLP's who do not know much about Apraxia, I told her that I was unsure of how much experience she has with this disorder, and how much she knows about it, and that I decided to give this to her so that she could learn more about how to best take care of my son's needs. She thanked me and said that any info I can give her is more than welcome...that made me feel much better! We need an SLP who will advocate for us also...I may be his biggest and strongest advocate...but I am NOT his only one!

I will update this as soon as I find out more from the evaluation on Wednsday and whether or not he will qualify for extended services...Please keep us in mind during your prayers...we sure can use them! :)