Did you miss me?

Did you miss me? I was on a post frenzy last week and then I slowed down:)
We are in the process of transitioning her to a different classroom that is better equipped to handle her needs. We (Lizzie and I) visited it before school vacation and it was great. They have everything for her. Touch screen computer, switches, PODD communication boards…so much amazing stuff. It is through Santa Clara County where our district did not have a classroom sufficient to meet her needs. We are excited for the switch. The teachers seem to be really great and are for inclusion.
Charlie also starts a pre-school program next week. It is 2 days a week through the one of the local park and recreation departments (LGS Park and Rec Dept – for those local). It is called World of Discovery Preschool. We got luck y and there is a spot available now and even luckier is that it is on the same elementary school campus that Elizabeth is switching too! This will make my Mommy Drop-off time so much easier and will give me a little more freedom to get stuff done without kiddos in town.
Charlie is a live wire and never stops. He chats all the time and is on full speed all the time. I can not entertain him enough! The school will be great for him to get some more language skills and playtime with kids his age.
At PT, we have introduced Elizabeth to a tricycle and she loves it. Through a generous donation, we will be able to get her the fully equipped one that I can push and not break my back helping her pedal. Pictures to come when we order the right size and it gets delivered.

ALSO, in other news for those who do not follow me on Facebook. We are going to BOSTON, MA to Boston Children’s Hospital to participate in the IGF-1 clinical trial for treatment of Rett Syndrome. We are very excited to be able to participate in the trial and help researchers one day reach their goal of finding an effective treatment or cure for Rett Syndrome. IGF-1 is not a cure, but it will help.
The trial is a double blind “cross-over” study.
Per Boston Children’s Hospital, “The “crossover” design to this study was created so that every child in the study will have the opportunity to receive this potential new therapy. It is hoped that IGF-1, by some of its known actions, will improve the outcome of children with Rett syndrome. If this is the case, the health of your child and other study participants may be improved.
This study will also help us to identify a potential treatment for Rett syndrome, a condition for which there is no curative treatment. If the medication works as we believe, your child’s behavior, and perhaps also her cognitionand vital signs, will show some improvement over the study period. Information collected in this study will also provide useful information which may help other children and future children who develop this disorder.” We will be traveling to Boston mid-July for 2 weeks to start the process. We have to wait for July because of therapy criteria. With out move to California. Elizabeth’s therapies have all had to stop and be restarted in a new place. She will start ABA therapy with a local company here in San Jose the first week of March…We have to be active in a therapy for 3 months before starting the trial for trial consistency. So June is 3 months away and the available appts are not till July. Wish us luck. We will update as we can on this process but we don’t want to create false hopes!

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    “My Rett Family”

    Just want to place a little shout out to “My Rett Family”. Since moving to California, we have met a few people and we are working on reestablishing our community.  Especially trusted adults that we entrust the care of our children.  “My Rett Family” is not my biological family, but it is close enough.  We share “genetics” and are brought together by a common denominator.  Our children have Rett Syndrome, a rare genetic disorder that is a de novo mutation “an alteration in a gene that is present for the first time in one family member”.  We did not sign up for the life of having a special needs child, but then again who does?  We are blessed.  We are blessed with beautiful spirited children who show us and the world love in its purest form.

    Today, I had to have a thyroid biopsy to confirm that the nodules showing on my thyroid are benign and indeed caused by Hashimoto’s disease.  Hashimoto’s Disease is a condition in which your immune system attacks your thyroid causing all different types of symptoms.  The biggest for me has been rapid weight gain (without the ability to lose it via diet or exercise), inability to regulate my body temperature, and pressure in my throat (from the nodules increasing in size).  I have been dealing with this for over 18 months and finally found a doctor who listened to my concerns and dove in to figure out what is going on.  After 4 doctors, the fifth doctor in a new state put me on thyroid medicine to help regulate my thyroid.  I feel a small difference, but time will tell.  It has only been 6 weeks and I know that I will have to increase it after my follow up blood work is done….Your thyroid literally regulates EVERYTHING in your body so we have to work up slowly!  I won’t find out the results of the biopsy until next week, but it is an 85% chance that they are benign…

    The reason for my medical lesson is that a friend, who I met 2 years ago through social media, aka FaceBook, who lives literally 2 miles from our new “pad” watched my daughter this morning.  A trusted person who gets it.  I don’t have to explain why Elizabeth does certain things…She just gets it.  Our daughters, although about 5 years apart love each other already and were upset that we made them part…Every person that I have met with Rett Syndrome just connects with each other.  I have seen it with Elizabeth.  It is truly amazing.  They are the only people in the world that just “get each other”.

    “My Rett Family” welcomed me to the club that no one wants to join when we got her diagnosis 2 1/2 years ago.  I talked to Texas families that reached out to us.  I met 2 moms in Massachusetts when we visited family for vacation (one who was a seasoned Rett syndrome veteran and one who got her daughter’s diagnosis a month after we got ours).  Texas families reached out to us when they got their daughter’s diagnosis (even before I was the IRSF Regional Rep).  When we moved to California, families reached out to us.  Helping us navigate and suggest doctors and therapists.  Trying to explain the way California works when it comes to special education and their struggles and triumphs.  They invited us to dinner and didn’t mind out daughter feeding herself and making a complete and utter mess with the pasta (which is one of Elizabeth’s favorite foods).  They invited me to Rett Mom’s Night Out.  They offered to watch my kids and did watch my kids.  They met me for coffee when I was in tears b/c I was lonely and lost.  They rejoiced with me and cried with me and listened to me for over an hour vent about Rett Syndrome and special education and ridiculousness.  I won’t call them out by name, but they know who they are and I hope I provide the same love and care that they do to me and my family.

    As much as Rett Syndrome steals our children away from us piece by piece…It gives us something so profound that it is hard to even put into words.  I am so thankful that we have a community beyond our biological family.  We may be a small community united by a rare genetic disorder but we are fierce.  Like the say “Don’t Mess With Texas”, “Don’t Mess with A Rett Syndrome Mama” 😉  The Rett Syndrome family community cares and loves our children as much as their own without question.  I appreciate every single one of you!

     

      Posted in Rettology | 2 Comments

      Inclusion and Special Education

      How do we want our children, typical and special needs functioning in society…as one. We used to segragate because of race, religion, blah, blah, blah…And society has made strides to see that this doesn’t happen. I think that it is similar to special education. We want our children to function in society and have meaningful relationships and a meaningful education so that they are productive members of society. My daughter will be 5 in May.  Since she was 3 she was in a full inclusion classroom.  We moved to another state.  She is currently in a special education classroom separate from her typical peers.  I have pushed since day 1 in this new to us district that I expect full inclusion within the next 2 years.  The may reason, I am OK with the special education classroom is that she is getting more one on one.  She needs to learn function communication so that when we hit Kindergarten and 1st Grade that she can be fully included and learn besides her peers.

      We will all get there eventually and we have to push, push, push, so that our children get the education they deserve and other kids get the education they deserve. I personally think it is a win-win situation, but people do not like change, especially when a practice is so engrained in society.

      On the show Parenthood they have a middled school aged son with Aspergers.  They writers are really good with showing the struggles that parents have getting their children included in a typical setting and even getting their educational needs meet.  Adminstrators talk in circles and get parents to agree to things that they don’t want for their kids.  I am so glad that “Hollywood” is showing the struggles we have getting our children a fair and equal education (or the technical term, FAPE, Free Appropriate Public Education).  Whether people realize it or not, everyone knows someone that needs modifications to learn this requiring “special education”.

      Special Education is a heated topic and everyone has an opinion that is valued.  I wish that it worked the way we all want it to…that as a team we deem what is best for our children and that a parent’s opinion and a child’s actual needs mattered the most.

        Posted in Rettology | 1 Comment

        School Break

        I always looked forward to school break when I was in school. As an adult it is different. I don’t get a break from school or from parenting. School break gives the kids a break from structured learning. It gives teachers a break and the ability to plan (wishful thinking:)) But parents get put back onto over-time duty. I am always on full time duty with 2 kids, 1 having special needs.  I really appreciate all my parents did for us growing up. We were always excited for school break, early release days, and summer.  Little did I know how full circle it would come!

        I guess I do get a break from waking up the kids and getting them ready to be somewhere on time.  I have never in my life been on time.  I have struggled with this since I was little.  Just ask my Mom…Do you know how many tardy notes she had to write for me when I was in High School?  TOO MANY!  Thanks Mom.

        Now a days I try so hard not to be late, but inevitably something makes me late.  Do you know how hard it is to drive 3 miles in San Jose, CA at 8am?  It is not as easy as you think! Traffic light after traffic light.  Always red.  As much as it was hard to get Elizabeth up and ready to be on the bus at 6:40am, we always did it.  I only missed the bus once and we were in the hallway.  Talk about sinking feeling as you watch the bus drive away:(

        Anyway, if you have school age kids, remember to Thank your parents for doing it all those years and showing you the right way to do it!

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          ABA

          Do you know what ABA is? Do you know why it is important to a portion of the population?
          I had NEVER heard of it until I had a child who needed it to learn a basic function of life, communication.

          ABA takes it down to the basics. Line by line. Item by item. It is a systematic way to teach functional communication. My daughter has a disability. She has Rett Syndrome, apraxia, limited hand function. Using ABA helps her to use the functions her body has in the way that she is able to. She needs to learn another language to be able to communicate with us. I can not even imagine what she goes through on a daily basis. It breaks my heart, but I know that she is learning to meet us half way, so we are learning on meeting her half way. I am thankful that there are resources to meet our girl’s needs and that we have health insurance to help us reach her and work with her to overcome her disabilities.

           

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            Be Honest With Yourself and the rest will just happen

            Rett Syndrome is just words, right?  I think sometimes that we don’t have to deal with it.  Then I am reminded daily of what my 5 year old CAN NOT do.  Well I will tell you.  She can do ALOT.  She surprises people every day.  She surprises Chris and I everyday.  Recently, we have been through ALOT of changes.  We moved, DUH.  With that move came changes in school districts and therapists.  The school district is trying, we have learned this, but there has been a lot of miscommunication because of the difference in HOW special education is administered across the United States.  You would think where IDEA was a Federal Law that it would be somewhat uniform…AHHHHH, NO.  It isn’t.  We are moving Elizabeth to a different classroom.  It is more hands on and has more equipment.  I do not like it b/c of the implications, but I know that it will be best for her and getting her to learn and at some point in the near future to be fully included in a mainstream classroom.   It’s a good thing.  Therapists are great and see her potential and what she has stopped doing…like chewing properly.  When did this happen?  I have no idea..This is when I feel like I have failed her.  But I think it is an environmental thing.  She  does chew when it is necessary. (We cut everything up for her so I guess we are enabling her.)   But then I look at my sweet girl through the eyes of new people, people who are meeting her for the first time.  They love her.  She is sweet and kind and smart.  She surprises everyone.

            We went for the classroom observation on Friday and she fit right in and worked on the computer and they were pleasantly surprised that she knew how to interact with the touch screen and switch…THANKS MARTHA AND AISD!

            She is getting ready to start back up again with ABA (Applied Behavior Analysis) so that we can teach her functional communication and other important life skills.  The therapists were so happy that she could do the things that she could do.  We showed off her video and  she showed us that she understood us.  She MATCHED 2 out of 3 items.  I did NOT even know that she could match!  What the What!!!!  It is amazing how just a little bit of encouragement and belief can carry a child to do what “typical’ people think impossible of her.  She will show them just how capable and smart she is.

            I truly believe that she is destined for greatness.  There is a cure out there and it is coming. When it does, watch out!  There is some great untapped potential lying around that is about to be exposed.

            I had a great high school English teacher and Guidance Counserlor.  He passed away last week at 61.  WAY too young.  His name was Louis Trudeau.  He was always supportive and never judgmental.  Our high school class was a “difficult” one.  I HATE that people said that.  When we label kids that is what happens.  I remember our 6 grade class being labeled the same way!  The kids in my High School class were not the same as my 6th grade class as it was the difference between public and private school, but ANYWAY there was a label put on us.  They are the trouble makers.  It makes me sad.  Because none of us were really trouble makers, we were just “another brick in the wall” that needed to find where we belonged in the larger scheme of things.  The Marian High School Class of 1996. We were awesome.  We dedicated our yearbook to an awesome teacher and mentor, Mr. Trudeau.  He won the heart of all of us.  He inspired us.  He taught us.  He pushed us beyond our limits.  He reminded us that we were not just average, we were excellent and that we could and would excel to anything we wanted to be if we were honest and tried hard.  To this day, I always strive to be honest and strive hard.  I am trying to teach this to my children and I live this way.

            BE HONEST WITH YOURSELF AND YOU WILL BE GREAT.  BE HONEST WITH THE WORLD AND YOU WILL BE EVEN GREATER.  Mr Trudeau, Thank you for being there for all us.  Thank you for being you.  Thank you for letting us trust you.  Thank you for living your life the way you wanted us to live our lives, to the fullest.  Rest in Peace, Mr Trudeau.  Know that you are and were loved in life and in death.

              Posted in Rettology | 1 Comment

              Getting Settled

              We are finally settling into a “routine” here in northern California.  It seems odd to say that we live on the West Coast.  It is hard to get used to the time zones and remember that we are 3 hours behind my Boston peeps and 2 hours behind my Texas peeps.  This becomes difficult when I need to chat with someone at 8pm!  Regardless, the move has its good days and bad days.  Mostly good.

              Elizabeth started school back in November and that is going OK.  It is different than our school in Texas.  In Austin, she was in a full inclusion class (half typical developing and half special ed) and here she is in a special day class (all special ed).  She is getting more direct services here so we are seeing how it all pans out.  Of course, we are still trying to determine what is best for our sweet girl.

              Elizabeth started physical therapy last week and our new PT is great.  She has different ideas and really sees Elizabeth’s potential.  It also helps that she told me that I am a great Mom.  How can I not like someone who thinks that I am great and so in tune with my kids :)  OK, enough of a pat on my back.  Elizabeth is so sweet and giggly with her and she wants to work and she is doing well with the change.

              Elizabeth starts occupational therapy next week at a highly recommended facility.  The only catch is that they do not accept insurance so I get to learn how to file insurance claims.  Awesome!

              Charlie is doing well.  He has some mad skills at climbing and balancing and stuff that I never saw Elizabeth do and I pray that she can do some day very soon!  Charlie is sweet and loving and kind.  He is also a ham.  Not quite sure where that comes from;)  His words are coming slowly, but they are coming.  He enjoys his mornings with Mama and he gets to go to a local drop in child care center every so often and he enjoys it.  It gives him some away from Mama time and some kid time.  We are looking for more activities to do, but have not gotten a schedule locked into place.  We did join a playgroup, but with the holidays it has been quiet.  I am sure we will meet some great people in this group.

              The West Coast Weaver’s say, Happy New Year and stay tune for more greatness from the Weaver duo, Elizabeth and Charlie:)

                Posted in Charles, Elizabeth, Rettology | 1 Comment

                Heart Warming

                It is truly heart warming to see your children playing happily and know that you are doing something right. Parenting is the hardest job anyone can ever have. There are emotions attached to it and you can’t leave your emotions at the door like you can when you go into an office. I watch my kids together. A 2 year old little boy who never stops; is hilarious; runs around like a maniac; and fiercely loves and protects like his sister.  a 4 year old little girl who tries so hard to do things that her brother does and she just can not.  She sits there happily playing with her music.  She wanders around the house checking things out. She looks out the window and checks on the weather.  When she falls, her brother goes running “Lizzie, you ok” in this sweet little voice.  He tries to help her up, but isn’t strong enough to do so and then yells “mom/dad/mom/dad, Lizzie/help!!!!” or comes running to find help.  He gently strokes her head and kisses and hugs her.  He holds her hand.  He is one of the gentlest, kindest souls I have ever met and I am proud that I get the opportunity to be his Mom.  I apparently picked names that truly epitomize my children’s personality…Charles “free man/strong” and Elizabeth “oath of God”.

                  Posted in Charles, Elizabeth, Rettology | Leave a comment

                  Changes…

                  Changes happen when you are looking and they happen when you are not looking.  Since mid-August, the Weaver family has been undergoing ALOT of changes.  Chris took a new job in California with Apple leaving Intel after 11 years.  He came to California and worked while the kids and I stayed in Texas “selling” the house.  We moved mid-October and we closed on the house in Texas the beginning of November.

                  We are settling into the house in California.  We are renting a one-story house and Elizabeth is absolutely loving it.  She has 100% free range of the house and has even figured out how to open some of the doors (they are special handles).  Although neither kid knows how to open the front door, but Charlie has figured out how to open the slider and go out the dog door to play in the back yard unsupervised, which is NOT good news.  Charlie has been a little pill lately and we are attributed it to the lack of verbal communication and the fact that he is 2!  He does say “please” and signs “please”.  Thank you to our good friend, Sharla.

                  Elizabeth is in school and it is much different than what we had in Texas.  We are not sure yet, if it is good or bad change.  But it is change none the less and it is what we have and we are making the best of it.  We are in the process of getting new doctors situated for all of us.  There is so much to do and trying to get things done with a 2 year old who does not listen and thinks it is HILARIOUS to run into the road is not helpful.  We are trying to do fun things during the week.  And we do a family day on the weekend, but we have only been here one month so all in time.  Change is slow, Change is fast.

                  The first week of school, Elizabeth wore her arm braces.  The teacher wanted to try the behavioral approach again (we have tried several times in the past).  Where the teacher is new to Elizabeth and Elizabeth is in a new environment, I figured, Sure…We are always willing to try new things and our ultimate goal is to behaviorally modify her hand mouthing.  Well, low and behold, she stopped hand mouthing at school.  So we tried again at home and she stopped hand mouthing at home.  She sometimes starts up again and we touch her arm/hand and say No mouth.  If she continues, we put the arm braces on for a little bit, but she really doesn’t need them.  Knock on wood!

                  We had a little scare with Elizabeth last week as she has started falling more, but it appears to be the dyspraxia getting to her.  She tried to “save” herself and has started to crumble to her knees and fall forward catching herself with her hands and arm rather than rolling onto her back and hitting her head.  I hate that my 4 year old has to learn how to handle her body not doing what it wants to do and what it should do.

                  Charlie is adjusting well to life here, but we still need to find child care for him and a playgroup of some kind.  Momma needs a break.  I am working on finding a gym or excercise group and meeting some new people.  Changes and new places is never easy, but I am hoping and know that I will find some amazing people here.  I have met another Rett Momma and have talked to a few other in the area.  They have helped me cope with the change in scenary and the changes in Elizabeth.  They have helped guide me to find good doctors and helped me deal with the new school district…

                  So during this week of Thanksgiving, I am thankful for family, thankful for old friends, new friends, and friends we haven’t yet met.

                    Posted in Rettology | Leave a comment

                    Words of Advice

                    My Mom told me last week that she had recently listened to a sermon (by Joel Osteen) ** Disclaimer: (This is how I interpreted what my Mom interpreted from Joel Osteen and I could be wrong… 😉 But I learned something and need to share )**   She said that it was OK to pray big…That when we pray to God, we often just pray for health, happiness, and blah, blah, blah…often we leave our prayers open, we don’t define them.  It is OK to PRAY BIG…Yes, Pray Big!

                    Well I have been praying Big!  I asked God to help sell our house, I asked God to bring our family closer together so that Chris, Elizabeth, Charlie and I can be a stronger core team.  I asked God to show me His light so that I can see the path He wants us to be on.  He is still working on the situation, but in the past week we have gotten good news on 2 fronts.  Not going to count our eggs before they hatch so I can’t share yet…And THEN I came up with an even bigger idea building on someone else’s idea.  Hoping that I can pull it off and hoping that the original person who came up with the idea will be on board so that we can change the world together.

                    It may not always be what you expected to get from the situation, but it opens your eyes and good things will happen…

                      Posted in Rettology | 1 Comment