Santa Visit

The kids and McKenzie saw Santa tonight

This hit home today

I woke up this morning in a complete panic.  Different than most days, as the worry in my heart was more intense than the normal worry a mother feels.  As a mother you worry about your children, constantly.  With Evan's most recent diagnoses and viral illnesses, and the frustration that I feel on a daily basis, I think it is all catching up with me today.  I try not to weeny whine about it because frankly, it is easy to feel misunderstood.  People brush it under the rug, and don't see the day to day.  God is the only one that really understands what is going on, so I do take great comfort in that.  Today I came across this wonderful article on a VCFS chat board that I am on.  It helps me get some answers in between waiting to see specialists.  It is a community that is going through very similar things that my family is going through.  Although we have been blessed with great educators for our children so far, I felt this was a great article and a raw understanding of what a mother/teacher is feeling.

Dear Parents of Special-Needs Children I’ve Taught In the Past,

I need to make a big apology.  You see, I’ve been teaching now for fourteen years, but I have only just recently joined your ranks.

I didn’t know.  Not even a clue.  I thought, mistakenly, that having two special-needs children in my family made me more sensitive toyour needs as a parent.  It didn’t.  And I’m so sorry for operating under the assumption that I did.  I’m not attempting verbal self-flagellation here.  I meant well.  I knew a lot about autism and some about other special-needs conditions.  I did care about your child.  And I did want to do right by him.  But, like a lot of teachers who Just Don’t Get It, I thought doing right by him meant giving him extra time on assignments and not allowing him to fail my class.  I thought being extra nice and seating her at the front of the room was what you needed from me.

But you needed more.  And I didn’t understand that.  You needed communication.  A lot of it.  You needed me to understand your depth of worry.  You needed me to understand that, if you’ve met one special-needs child, you’ve met one special-needs child.  You needed me to understand that I was teaching your child, not an I.E.P.  You needed to know, not assume, that I would go out on a limb to make sure your child’s needs were met all over the school and not just in my classroom.  You needed to not worry that, when your back was turned, I was still doing everything that I promised as well as thinking of better ways to meet your child’s needs.  You needed to talk about your child in meetings and not worry about the clock.

I know better now.  In just a few months, I am going to be placing my special little boy into the hands of the public school system.  Because he is non-verbal, I will have no way of literally knowing how his  day went, if he is being treated well, and if those to whom I am entrusting his care really do care about him.  This kind of fear is paralyzing.  And more so because I know just how little training (read almost none) that most of the staff in a public school have in dealing with children like my son.  They, too, will mean well.  But they won’t know.  They won’t get it.  I now know why you carry The Binder of Epic Proportions to every meeting.  Mine is getting bigger by the day.

I look back now at all of your children and wish that I had picked up the phone more, written quick notes home more often, challenged your child more often rather than less, and make you feel certain that someone else loved your baby in your absence.  For that, I’m sorry.  I promise to do better for those kids in the future.  I promise to not assume anything about your child’s unique situation and needs.  I won’t just react to bullying of your very different child.  I will actively be on the lookout for it.  I will remember your child and her possible confusion on activity bell schedule days.  I will take more time each day to get to know her.  I promise to do my best to push, cajole, educate, and even take to task my colleagues who don’t get it in the years to come.  I pray that teacher training will improve in the future and that my son will reap the rewards of that.  And I hope that I am just as patient, kind, and understanding with his teachers and schools as most of you were with us.

And those of you who weren’t?  I get you too.

Sincerely,

Your Child’s Former Teacher

3 day 60 mile Breast cancer walk

In November of 2012 I am going to be participating in the 3 day 60 mile Breast Cancer walk in San Diego, CA.  In order to do this walk I need to fundraise $2300.  This walk is a personal goal of mine and it is also to honor both of my Grandmothers and an Aunt that are/were survivors.  Everyone has their own charity that they like to contribute to, but if you are feeling led to support my walk (60 miles!) I would be very grateful.  You can donate online at The3Day.org or call 1 800-996-3DAY to make a donation with a credit card.  If you would like to pay by check you can send a check to me and I will send it in for you with a registration form. Please make all checks payable to “Susan G. Komen 3-Day for the Cure®”and write the Participant ID number 6428361 in the memo.  All donations are tax deductible.  Also if you work for a company that does matching donations, that would be great to let them know. If you would like to join the walk we are looking for more team members.

Thank you for your consideration!

Quick link to donate online:

http://www.the3day.org/site/TR/Events/General?fr_id=1430&pg=pfind

Infirmary

This fall has been a rough one for our family.  The kids had various colds to start the school year, and then Gracee got 2 sinus infections, Evan got Hand foot and mouth, bronchitis, double ear infection, pink eye and now they are both home today....Grace with a fever, Evan feeling nauseous.   We have had many visits to the Dr, and pharmacy this fall.

Gracee may have allergies which are causing her sinus infections.  We are now on nose spray and Zyrtec for the next month to see how it goes.  It is possible she may need her tonsils and adenoids out.  Evan may have to get tubes in his ears again come February if the fluid in his ears does not go away.  With all of the diagnoses that he faces, his hearing his key to his behavior.

In between all of that we have found some time for fun!  The weather has been gorgeous this fall 65-80 degrees on a given day with very little rain.  My sister was down earlier this month and so was David's Mom.  It was great to have some family time.  I am enjoying helping out at school and of course I am looking forward to this Christmas season with the family.

Knotts Berry Farm with Gma

The kids and Auntie Kate

Me and my sister

Evan the Indian (Thanksgiving feast)

Autism walk in Anaheim

Dinner out with friends Public house, Temecula

David and Jesse on Thanksgiving

Me and my wonderful friend Kristen

Evan and friend Nathan

Me and my girlie

Tree lighting at the Mission Inn, Riverside, CA

I have reached my goal already of walking/running 365 miles this year, but I am still working on getting to 400 by the end of the year.  I am also signing up for the 3 day/60 mile breast cancer walk in San Diego next November.  I am going to need to raise a lot of money, so you may get sick of me by then.

Evan lost his first tooth/Halloween fun

Evan lost his 1st tooth on October 30th

 The kids dressed up

Our pumpkins

Me and the kids

Me and David carving pumpkins...the kids ditched us

U of O pumpkin (David's creation)

My California pumpkin complete with palm tree

Evan with his pumpkin and the missing tooth

Gracee's heart pumpkin

Me and my pumpkin

Cray hair day....Gracee had a rats nest with fake rats.

The kids on crazy hair day

Gracee on 70's day

Pumpkin patch petting zoo

Gracee at the petting zoo

Gracee measuring herself

Evan the ghost

Gracee the ghost

Cupcake creations

The kids at kids club at church...Evan was a walking snack bar and Gracee was a 60# sack of potatoes.

New Family pictures

Evan Kindergarten

Gracee 2nd grade

David and Dorothy

Our family Fall 2011

Gracee Ballet Thumbelina (can't seem to flip this on the blog)

35

Octoberfest with the kids

Evan and Grace with their top hat and crown they made at the festival

Dody and David at Shogun for our Birthday dinner

Ryan, Kristen, David and Me at Shogun

Cake and wine afterwards...that is a wine yolk holding my glass.  We sure had some laughs with that thing.

Breakfast brunch for Kristen's 29th birthday

My birthday buddy Kristen...Her's is the day after mine.

Turning 35 a few days ago felt a little strange.  I had a wonderful weekend with friends and family and feel so blessed by the amazing people in my life.  Here are some pictures from the weekend!

Are you ready for some football?

Evan #82

Drinking his Gatorade

Garcia...ready to hit the Field.

Football season is in full swing and our very own football player, Evan had his first game tonight.  He did such a great job.

UCLA Medical Center Research

This is a research study that we did with Evan yesterday.  He did such a great job.  What a blessing to us to be able to be part of this.

22q11.2 Deletion Syndrome (22qDS, or Velocardiofacial Syndrome) is a genetic disorder that occurs in approximately 1 in 4000 people.  It is a disorder that frequently causes craniofacial anomalies and heart defects. It can also cause developmental delays. Many people with 22qDS have a greater chance of having attention deficits, learning disabilities, and particular psychiatric conditions.

While there is no known cure for 22qDS, there is a lot of exciting research happening in this area. UCLA investigators have recently embarked on a study to further expand the knowledge of 22qDS in humans. This is not a treatment study; however, it is hoped that the information gathered from this study may help to develop treatments for the disorder in the future.

THE PURPOSE OF THE STUDY

This current research study, conducted jointly by investigators, Carrie Bearden, Ph.D., Departments of Psychiatry and Biobehavioral Sciences and Psychology, Katrina Dipple, M.D., Ph.D., Departments of Human Genetics and Pediatrics, and Christina Palmer, Ph.D., Department of Psychiatry and Biobehavioral Sciences, aims to examine emotional adjustment, thought processes such as memory and attention, and brain structure and activity in children and adolescents with 22qDS, as compared to children and adolescents without the disorder. The study also aims to determine whether variation in the specific genes affected by 22qDS is related to differences in brain structure, function and behavior. By repeating the assessments at two follow-up visits (1 and 2 years later) we will be able to determine how brain structure and function changes over time in individuals with 22qDS.

WHAT WILL PARTICIPATION INCLUDE?

Baseline participation may take between one to two days (~7 hours for all study procedures). Participants will be given paper and pencil and computer tests of memory, attention and logic, and interviews about their mood, thoughts and behaviors by a trained staff member at the UCLA Center for Cognitive Neuroscience, and an MRI scan at UCLA’S Brain Research Institute. These tests will help us to learn more about how the brain works in people with 22qDS. The study also involves a review of medical records, to get information about birth and medical history, and an optional blood or saliva sample obtained from both you and your child, to determine whether the genes affected by 22qDS may be related to differences in how the brain works. Some of the study procedures will be repeated at 2 follow-up timepoints. All procedures will be explained carefully and all participation is completely VOLUNTARY. You may withdraw from the study at any time. There is no financial obligation on the part of the participant.

Participants will be compensated up to $260 for full participation in all of the study visits. If after the initial evaluation it is determined that you are not eligible for the study you will be compensated $20 for your time. There are minimal risks involved with participating in this study.

WHO MAY BE ELIGIBLE TO PARTICIPATE?

1. Your child is between the ages of 6-22

2. Your child has a confirmed diagnosis of 22q11.2 deletion, via FISH test

3. Your child has not been diagnosed with a disorder of the brain or nervous system (such as epilepsy, encephalitis, brain tumor, etc.)

4. Your child does not use drugs or abuse alcohol

5. Your child is able to complete the study measures and interviews in English.

Contact Information

If you are interested in finding out more about this research study, Please call Carolyn Chow at (310) 825-3458 or email beardenlab.ucla@gmail.com *Individuals under 18 must have their parents call.

Principal Investigator: Carrie Bearden, Ph.D.

Email: cbearden@mednet.ucla.edu

Department: UCLA Semel Institute, Depts of

Psychiatry and Psychology, and Brain Research

Institute

Please be assured all inquiries are kept confidential

participating in this study UCLA IRB Approved Approval Date: 11/17/2010 Through: 11/16/2011TeCloemphmoitntee::(M31e0di)c7al9I4R-B9733

Back to school

The kids are back to school here in Southern California.  The summer just flew by, but we had a great time.    Evan just started kindergarten and Gracee is in 2nd grade.  Gracee got the same teacher as last year which I was very happy about.  Evan got a great kindergarten teacher who was a special education teacher for several years.  I will be volunteering in both of their classes starting Thursday.  I have worked out carpooling with my friend Lisa which is a blessing for both of us.  I seem to fill up my 3 1/2 hours of no children very easily.  The biggest difference is that I can run errands without children, or maybe squeeze in a quick work-out while they are away.  So far I am enjoying the new found freedom.

Gracee and Evan 1st day of school

Our 2 school kids

Me and and the kiddos on the 1st day of school 

Evan in Kindergarten

Gracee a big 2nd grader