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.

New blog name for new info

I changed my blog name to "Rare Chromosome Disorder" because after speaking with David's Metabolic doctor on his genetic testing of 2009 it was confirmed that David does not have Fragile X Syndrome; even though he carries a premutation of chromosome x, he also has what they call "deletion of chromosome 2".  David was tested on Oct. 13, 2009 for Microcephaly (small head), Clinodactyly (bend or curvature of the 5th fingers), syndactyly (web toes), and cleft palate. His genetic test called High-resolution oilgonucleotide array CGH came out positive for Abnormal. The results were that he carries a de novo (a new; from the beginning) interstitial deletion of 10 Mb extending from cytogenetic (The study of inheritance in relation to the structure and function of chromosomes.) band 2q21.1 to 2q32.1.
We had this test done also and our results were yield normal, even though I have the premutation of chromosome x I still passed this gene to my son.
After speaking with his genetic doctor she was baffled of the fact that David had the premutation of chromosome x and the deletion of chromosome 2. According to the website "Unique" in their information leaflets under chromosome 2 section, you can read and inform yourself about this rare disorder.
There is no specific diagnosis name yet just that it is considered a chromosome disorder and about 45 people in the world have this deletion, that is what makes it so rare. This new information opens up a whole new world for my son and us, we need to re-evaluate his needs according to this new information. More research will be done on my part and I hope that if you know anyone with a rare disorder you can guide them to my blog. I hope this new information was valuable and re-assuring.

Follow up on meeting

The board meeting went well, Mrs. Vacker actually apologized before hand and said it was an error in her part, a couple of her board members confronted her on that mistake and she toke responsibility...good for her. I was able to speak again and I mentioned that while I observed a Riverside District School I saw how much technology that class room had for their students, for example: ipads, computer apps., remote control toys with push button control. I mean they had some good stuff and all the kids were capable of using them, thanks to the wonderful aides in that classroom. I asked the board to please look into having technology be put into our district especially in Mr. Hansen's class because our kids would be able to communicate with a tap or even a simple eye brow movement and to have the funds for special education be invested in technology. Also I stated that Mr. Hansen's class room does not do community based intervention, no mall trips or any trips what's so ever. These kids never go out, so why can we look into it and have this intervention be put in place at Sunnymead Middle, since all other schools seem to do it  why not ours?
Cathy, another parent who has a daughter in Mr. Hansen's class got up to speak and she mentioned her concerns regarding her daughter. Her daughter has had a fall accident under Mr. Hansen's supervision and Cathy has asked the school to put in carpet in the classroom because her daughter has CP and she and other students need a soft surface to move around in. Also while she had an IEP meeting she asked to see the class after and when she walked in she saw her daughter laying on the floor, not the carpet, but the floor.
How can they just leave her there and not put her in a bean bag or even her gait trainer? She begged the Board to please go see the classroom and see for yourself, she began to cry and who can blame her, it hurts knowing your child is being mistreated. Mr. Rios assured her that the board is taking this seriously and will look into it.
Thank goodness!!! another parent was brave enough to speak out and now their are two complaints on this teacher. And as for the other group who was their to support me on my issue regarding my first amendment rights, they were their and they got a chance to speak out on the Budget Committee Advisory meetings to keep them public and for the board not to try to make the meetings  a Superintendent Budget Meeting, because of the Brown Act the public has every right to see and hear where our budget is going. So the meeting went well and the outcome was good. In update on Mr. Hansen' investigation, I believe its finalized and Kathy Yugo and Mrs. Woosley are still there training the aides and Mr. Hansen. So I asked Pam Binder to look into the matter about if I can return to the classroom to observe my son. Thanks to all who were there to support us and will keep you posted on the outcome.

Round Two v. Council

Tomorrow is another Board meeting at Moreno Valley and I'm attending to hear what the board has come up with regarding my complaint on Mr. Hansen. As far as I know there is an investigation going on but what I don't understand is how a teacher can be investigated and re-trained for the second time on the same issue. How do you take accountability to his incompetence of teaching while you are still training him? Either Mr. Hansen is unaware of what he just told me or the district has not really toke my complaint into consideration.
Also, I'm going to this meeting to approach Mrs. Vackar on her ignorance regarding my right to speak freely in a public meeting and how telling me not to mention the teacher's name is a violation of that right. A group of supporters are going to attend this meeting as well to acknowledge Mrs. Vacker and remind her of this great Constitutional right we have in this country. I just want what is right for my son, a better education, is that so much to ask for? why does the district make it so hard and put so much more on my plate....it's not like I don't have alot on my plate already...it's not easy dealing with a child of special needs and yet they find ways to make your life more difficult because they feel that our children are not important in this community. It's ignorance like that which causes movement and people to rise against; it's ignorance like that which makes a community stronger.
So next time you attend one of these board meetings, ask yourself this question: Am I important and is my issue important, that I may get the respect and honesty that I give in return? and the answer is YES!!! everyone has a right to speak and be heard regardless of race, gender or disability and for someone so ignorant not to understand this should not be in our city council board.
 So I ask everyone who reads this to call Moreno Valley Unified School District at 951-571-7500 or visit the MVUSD.net website and email the district and complain to them and ask them "why is the council violating our citizens right to speak and why is the district funds for special education not being used in special education?
If everyone got involved and let the district know that the community is watching them, we as parents will be taken seriously and action will follow with positive results.

How Assistive Technology Enables Dreams | Edutopia

How Assistive Technology Enables Dreams | Edutopia

Waiting.....

Mr. Hansen is being investigated by Human Resources so in the mean time I am not allowed in the class room till then, so I'm waiting...for what...I don't know. Results...I doubt it but I would like to see what they have found and if they think that Mr. Hansen didn't violate the FAPE rule, their full of it and only covering their butts just in case I decide to seek legal action. What a waste of time, but this is the procedure and steps that need to be taken. It really upsets me because sitting in his classroom for 2 hours and watching this teacher roam around as if he had nothing important to do, to put kids in front of a computer, 3 at a time, on a food game that speaks the item is just putting them aside so he don't have to teach them anything. To ignore a kid at a desk while he chews the heck out of his toy for 5 hours during circle time and the rest of the day is sad and disappointing. To see another kid be put in front of a device meant for blind children and she can see, just baffles me. To see one kid be paid attention to more then the other 11 kids doesn't make sense and to tell me that this kid can speak 50 words, yet I haven't heard one word come out of him. To question an IEP and ask why he has to do the PEC system 20x for my son to learn how to communicate...and still doesn't do it, why is he still here? To see one kid who used to talk and walk independently before he came to his classroom and now says no words and needs assistance to walk?
The system is broken and no one cares in the Special Education Department at Moreno Valley because if they even cared half of what I care I wouldn't be doing what I'm doing. My son matters to me and his education is important and if you can't educate then don't teach if you can't deal with parents like me then retire. It's unfortunate that this "one" teacher can hurt all other teacher's who do care and love these kids, it's unfortunate that this "one" teacher is only in special education for the money. Makes you wonder why some parents choose to take their kids to Charter Schools or a different district; why fight with us, why spend more tax money on your lawsuits form parents like me? If they just toke the time to really listen to the parent's that are honest and just want what's best for their children and put us first we could avoid all this, but they have forgotten how to be a good person;  politics, money, rules and regulations, or just plain ignorance has over come their judgment. So I'm waiting....for what...who knows...a miracle...an epiphany....maybe just closure.

One voice vs. Five Board Members

On Oct.23, 2012 I attended my first Board Meeting in order to speak about my concerns regarding my son's teacher Mr. Hansen. I was nervous because I was the only parent there and even though the other parent's couldn't make it, I had to over come my nerves because I'm not one to speak in front of people. Once I got to the front and began my complaint I started to feel better, then BAM one of the Board Members interrupted me and said "please don't use the teachers name"...what? I just used his name 3x and the reason why I kept saying his name is that I want everyone to remember his name.... MR. HANSEN. What ever happened to freedom of speech and isn't this a public meeting?
Anyways, I asked if I could continue and she said go ahead, so I had to keep reading and hopes that they got the picture. Once I was done they said I could file a compliant with Martinrex Kedziora, the assistant superintendent, so I got the form and began to fill it out. They gave me extra paper just in case. I noticed at the meeting that Mrs. Villa (ex-principle of Sunnymead) was there to receive an award with other principles for increasing their test scores, once they received their awards everyone left, but she stood. She heard what I had to say and I know she will inform Mr. Hansen because they are close. She always backed him up and covered for him, now she is no longer there since Monday. Once I finished my compliant Mr. Kedziora's secretary asked if I had anything else to put, I told her there is too much to put.
Well it's up to the Board to inform the teacher and have him respond to the complaint, Mr. Hansen is a good "bullshitter" he makes things look good and sound good to anyone who doesn't see what I see, so my notes will go against his notes...and the battle will begin.
I will not stop until my son get's the proper and best education possible.

Stuck in the middle of a broken system

My son who is delayed in speech but can function if the PECS system was used more often, he is still in diapers but is mobile. Unlike his other class mates who are either on a wheelchair or with a severe disability, they need more attention because of their health issues so my son gets kind of lost in this 6th grade class. He is not autistic, he is not on a wheelchair with health issues, he doesn't have down syndrome or CP, his in the middle.
He can do activities that require consistency and have structure, but once you take that from him he becomes out of sync and refuses to do or learn anything. Mr.Hansen is a lousy teacher at Sunnymead, the man doesn't do anything, so the kids just sit around on the floor, wheelchairs, rubber seats or basically on the floor. There is not structure and the aides work at such a fast and unorganized way, because Mr. Hansen has no leadership. I've made my complaints to the special education department and all they suggested is to give Mr.Hansen more support and new tools to make his class better, well that was a waste of time because Mr.  Hansen only does what he wants to do regardless of the support from the district and new tools from other teachers.
The district refused my son's transfer to another school which wold have been better but their reason was that they don't have the services that David needs or room at Landmark. They admitted that David's services or program are not available for 6th grade within the district so they felt it was for his best interest to be put with the severe kids.
You would think that if the district knows there is a problem in my son's class they would do something about it to avoid a law suit, you would think that the district knows that they are in desperate need of better programs/services for students like my son and would provide that kind of class environment.
So I'm asking anyone who feels the same way I do call the Board at Moreno Valley Unified School District and complain with phone calls, emails or letters. One voice makes a ripple but more voices makes waves.

Beginning 6th grade..what a nightmare

My son is attending Sunnymead Middle in Moreno Valley and his teacher basically does nothing in the classroom, I heard rumors and stories by other parents about Mr. Hansen, so I toke it upon myself to observe his class on a daily basis...and I don't like what I see. The stories are true, he does nothing, he just wonders around the room looking busy and stretches "circle time" for an hour and "music time" for 30 min. No IEP's are done except for my son he gets attention on some of his IEP's because I sit in the class room to observe.
The aides are wonderful but they are helpless do to Mr. Hansens's non-leadership and guidance with the students, no communication or orde is in that class. I have voiced my concerns to the special education department and to the principle and even though they are giving him another chance by showing him the tools and giving him support Mr. Hansen still choses to do what he wants to do regardless of what anyone says.
Five years of complaints and five years of getting away with murder. Just baffles my mind as to why the district still sits on their "butt" and does nothing about it, you can't fix what is broken and this has been broken too long.

Hello, it's been a long time since I wrote anything so bare with me...lets keep you up to date on the clinical trials, I haven't heard anything yet so just kind of laying back and will try to contact Dr. Hagerman at a later time. I have been busy with work and just playing catch up with "to do" things. David has graduated 5th grade and is now headed to middle school, nervous and excited at the same time. New teachers to deal with and new schedule to handle, hopefully David will adapt. He has been more self advocate for what he wants at home, just by making sounds he can let me know how he feels about his t.v. shows, music or even his snack. He has grown taller, about an inch and he has gotten more demanding. His attending summer school and still loves the bus ride. As soon as the bus pulls up front of our house and he notices us, he just smiles and flaps his hands while he laughs...beautiful sight. Still loves to play with the faucet in the bathroom, turns it on and just goes wild splashing water. Have a nice summer everyone.

A Drug Shows Promise in Autism - Technology Review

A Drug Shows Promise in Autism - Technology Review

Clinical Trials

Last week I read an article on Neurology Now about a family who has a son and daughter with Fragile X, their son Parker toke a clinical trial for a medication called Minocycline which helped her son with speech. So I looked into it more online and found Dr. Randi Hagerman at UC Davis was in the process of doing another clinical trial for this medication. I emailed him and within two hours he responded, he suggested another kind of medication that might be more suitable for David. He asked me to have his doctor refer David to him, so I emailed my son's pediatrician and metabolic doctors and hope I can get a referral to see Dr. Hagerman. I know that clinical trials are just that, trials, and not a miracle worker, but just for David to have a chance to improve his life regarding this disorder can benefit him more if I just try instead of saying maybe. So I cross my fingers and see what happens next.