Reaching his goals

David's teacher at Landmark Middle has been keeping me updated on his toilet training, David has been getting better at notifying when he needs to go! That is awesome, this is just the beginning of what will be a long road for David in reaching his goals for potty training. If he keeps this up and through hard work, hopefully he will be trained by high school or at least 10th grade. David is very fortunate to have such a wonderful teacher and excellent staff at Landmark...all that stress and issues with the district was worth it, his education is so important to me and I will not let anyone define him as a second-class student, he is important just like every other student that attends school. Word of advice parents: don't ever give up, don't let the school tell you they can't do what you asked for your child and always stay postive.

Neuromuscular Appointment

So about a month ago my son went in to see his Pediatrician and I asked him about David getting checked for scoliosis, he gave David an x-ray and we left it at that. He has been referred to a Neuromuscular Doctor and I am assuming that David might have scoliosis...here is another rock to climb in this already precarious situation, if it isn't one thing its another. Lets pray that he only needs a brace and not surgery, depending on the results I get next month.

It's gettin HOT in here

After spending a very Hot day at Splash Kingdom in Redlands with the kids, we began to head home but while driving on the freeway and having my nice air conditioner on, it suddenly became humid? NO!!!!! I lost  my air conditioner and while on the freeway, I can't roll down the windows all the way because David freaks out with the massive wind blowing at his face. So when I got the chance to exit and take the surface streets I was able to roll them down at least half way, I began to mess with the automatic windows just so I can get the right amount of wind that David could handle. Sweating, like I just ran a marathon, I am struggling to get these windows right...and finally I did. David was starting to look as if he just walked out of the shower, it was crazy hot...so I drove up to the nearest drive-thru and ordered David a chocolate shake and us some drinks. David was a trooper though, he drank that shake till the last drop and not once did he put the cup down, sweat coming down his nose and forehead, it didn't matter he was enjoying that shake. After 15 minutes of this torture we finally made it home to a cool air conditioned home...ahhhh.

To my surprise

So, we get up earlier than usual and David is in a good mood ( he must of gotten enough sleep ). He looks over to my night stand looking for his toy, he stretches his neck forward and looks down to the floor where he notices his toy, he jumps out of bed and picks it up and begins to play with it. I then get him ready for school, put on his AFO's and make him oatmeal...that kid loves his oatmeal. We wait outside for the bus and its taking long for the bus to show up. So, we wait and wait and I realize its not coming, I called transportation and no answer; I put David in the car and I drive to the school complaining to the Gods as to why the bus didn't show up, I drive up to the school to drop him off, but to my surprise there is no school today...whaaaa??? Gee, thanks for the "heads-up"....I drive up to just see an empty parking lot and the school locked up.

AFO's

       David got back into his AFO's (ankle-foot orthoses) in July of last year and it toke him about 2 weeks to get adjusted to them. As always I followed the procedure of 30 min. on 30 min. off and observe for redness and bruising, since wearing his AFO's David has gotten used to them and is up and around. When David was seven years old he had gotton his first AFO's and he had just started walking at the age of 5, so I had no idea how important these AFO's were to David's needs, keep in mind....lack of education and research.
        Since David has hypotonia (muscle weakness of the legs) it was crucial for him to wear them daily, now I am not a perfect parent, so I did forget at times to put them on and having three other children to look after was not an easy task for me to remember. I regret not following the instructions back then, but live and learn and I revamped myself.
        David well always have to wear his AFO's in order for his feet to adjust properly so he can walk with no pain, his feet tend to move  inwards which caused his knee bones to curve out, not giving him a straight-leg standing. For those parents who know how uncomfortable AFO's can be on a child, you understand my hardship but also let us not forget to give information to our "new" parents who are dealing with their kids in regards to AFO's.
       As for David, he has adapted well and will continue to wear them until his Orthopedic doctor considers them no longer needed, but what I am hearing from the doctor at this moment is that David will have to use them for the rest of his life. So parents if you are considering or required for your child to have AFO's, ask questions and do research, as for me I had to get a referral from his Orthopedic doctor to the AFO Specialist who makes them (Johnson's Orthopedic) and then have him fitted. David's Medi-Cal insurance paid for them so you will have to contact your primary doctor or insurance before you start the process. I hope this information was helpful.

Great News

First and foremost I finally got David out of Sunnymead Middle and into Landmark with a remarkable teacher, secondly I also got a break and was interviewed for a permanent  position with the district and now I am working at Hidden Springs Elementary for 3.5 hours. Unfortunate I did not get to keep my 6 hour position at Canyon Springs High School, as much as my teacher Mrs. Longo pleaded with the administrators and HR it was a "no go". So I went from subbing 6 hours to a perm. position of 3.5 hours.

Funny thing though, when I was interviewed back in January 30 I was told by Mr. Frazier that there was only 3 hr positions available and was I still interested, of course I am...duh...permanent position of 3 hrs is better then subbing forever. So I was o.k. with it...but during my orientation on March 12 I saw 4 other aides there, two of which I knew, and all 4 got hired for 6 hour permanent positions. All of us at Elementary schools???? hmmm. Anyways, I kind of feel that I got the short end of the stick, regardless did Frazier do this to hurt me/ who knows, but for now I am o.k with 3.5 hours.

But as anyone who has worked for MVUSD knows that they hold grudges and they don't see the big picture as to how aides, teachers, staff can be better utilized to make MVUSD function more professional and better for our kids. Everyone I have talked to has always said something negative about this district, it is sad that the people who run the show can care less. I love this city...don't get me wrong and I love what I do but unless we clean house and reform this system we will always be the bad example of what not to do, and all we can do as parents is never give up and speak up for what is right.

As to the latest on my son's teacher at Sunnymead, last I heard when David left within two weeks Mr. Hansen and the entire staff was removed and replaced. Mr. Hansen is Finally being investigated by the district and hopefully they can see the what is really wrong with the system and that I was not a crazy mom gathering more crazy moms to protest. I was just a concern parent and I was not looking to getting anyone fired just to please fix what is wrong with it and it is sad that others had to pay for Mr. Hansen's five year mistake.

Well, till then keep smiling and keep fighting there is always a light at the end of the tunnel.

Hopefully a resolution

           On February we are finally going to have my son's Mediation Hearing with his school district. My advocate has put together a reasonable summary and demands and I'm hoping that the district will give us what we ask for, its scheduled from 9:30-4:30 so I am assuming that it's like a bankruptcy court where you show up and wait to be called...but then again does it really take 7 hours?
           Also his Tri-Annual IEP is coming up on January 30 and his IEP (Individualize Educational Program) is going to be revised to his needs, his old IEP goals seem to not make sense so I revised it to his specific needs and realistic goals. I looked up on how to write IEP's on the internet and found some very good advice and strategies. I believe every parent should really look at their child's IEP and determine the reality of   the goals and what is expected from their children.
          So till then we will await our outcome in February and hope for the best. Wish us luck.

Update to his Education

Spoke with David's Advocate and we are in the process of filing the petition for the hearing mediation regarding MVUSD not giving him his one-on-one aide that I requested and also to make some new demands due to the insuffient teacher (Mr. Hansen) at Sunnymead Middle. Regardless of the re-training and support given to this teacher and staff it does no justice to keep my son there for the next 3 years till he gets into High School. David would basically enter High School lost and behind if he stays in Sunnymead Middle, so I have requested his transfer out to anothe Middle school with a better teacher and staff. My request are simple and reasonable, the teacher doesn't do the PEC system  (see You Tube under PEC System phase 1) which is on his IEP (Individualize Education Program) becasue he is just plain lazy.
Five months of this un-necessary battle, lack of sleep and stress will finally come to an end soon. Good news David is able to adapt to a communication device to use a soft ware applicaiton to communicate so I requested that he get an AT Evaluation from the Psychologist.
I walked in 3 weeks ago to pick up my son for a doctors appointment at 2:45, while entering the room I saw my son sitting at a desk by himself touching a texture puzzle while an aide sat on top of the table watching over him. The other two aides were talking to the Substitute because Mr. Hansen had left. Kids just kind of scattered everywhere, one by the door laying on the floor playing with a guitar toy, one sitting on the floor (which she is not suppose to be, she has CP) which she should be on a bean bag personally requested by her parents. There was no curicculum being done just socailizing, so as I got my son ready to leave Mr. Hansen walks in and is suprised to see me. "Oh I was expecting you this morning?" he said, of course I didn't make it in this morning, they want me to check in before I show up to his class. Before I just walked in with out notice and after signing in at the front office; now since I filed the complaint I am asked to call ahead of time and was asked to wait till January to observe the class because they are still getting things together for the transition. From what I saw 3 weeks ago I see no progress, so when school is back in session January 14, 2013 we are suppose to have another "special" open house for us parents to observe the class room as a new and trained place for our kids.....blah blah blah....I am so done with these people they have no clue as to what makes a great program for these kids because if they did it wouldn't involve Mr. Hansen.
I should  be hearing something about our hearing date soon and hopefully by February he will be at a better school where they value the education for special needs. I tried to get other parents involved and to my surprise only one is making noise just like me, the other parents I feel have fallen for the Districts deciet and lies of how this new training will be better, its sad but alot of parents prefer not to fight it's just too dang stressful and we already have to deal with our disbaled kids. One thing is for sure Jeff Frazier  (Special Education Assistant Director) needs to go, that guy can care less of what the parents want, he has such a one track mind and never supportive of any issues that involve our kids. I mean how hard can it be to improvise, adapt and LISTEN to our concerns, not just listen to us complaining but take into consideration the child first.

My son is "Unique"

After learning about my son's chromosome disorder and searching the web for some insight I came across the Unique website and after registering with them I was also linked to Facebook with other parents who have children with rare chromosome disorders. So I posted my introduction and it was amazing how many other parents understand you and from all around the world. This open ups a whole new world to me and my son, new information and research needs to be done so he can become the best at what is expected of him. So I offer this advice...Educate yourself people, they are so many types of disabilities out there that we tend to ignore the most rare becasue they are not in the spot light like Down Syndrome or Autistic, but never the less they are all special. Having a child with a rare chromosome disorder can be scary but parents don't give up, advocate for your child in every which way. I asked lots of questions and did lots of research to get where I am today with David and my challenge has just turned a different corner. Happy New Year to all of you and may the best of wishes come true for 2013.