I Can Change The World!

It's been quite a while since I have posted an update on Beckett. Since the start of the new year we have been full speed ahead.  Beckett has started a new medication which in addition to his Lamictal has helped him control his meltdowns and sensory overload.  He has been on Clonodine for the last 6 months.  It has been a life changer for us.  His meltdowns are minimal and his cognition has improved over time.  We still have the occasional tantrum, which is expected.  But this is nothing like from years before.  The hours of screaming are gone and it is much easier to redirect his behavior.  He is now at a daycare where the children and workers love on him.  I see him truly happy and there has not been an issue with him at his new after school care.  The foundation is taking off.  We are full speed ahead and are focusing on building our programs and planning a long lasting strategy that will sustain our mission.  My new motto has become #NEVERSTOPPING.. because until I am 6 feet under I am never stopping.  My hope grows stronger for these children every day.  The great scientists and clinicians who are walking by our side all the way are going to help us get there.  There is so much to say and do.. but to keep this short there is one picture that says a thousand words.  A picture that my Beckett brought home form school said it all.......

He has changed my world.......

An On Going Phase

It has been a busy summer.  Beckett has been going to day camp every other week with his twin sister.  We were suppose to start his ABA school in July, but have had to put it off until we can see about our finances.  Our insurance deductibles have gone up again.  We are still trying to pay off our loans from previous deductibles from past years. Another issue that we had with starting ABA is that we can't get much help from my parents who could bring him and pick him up, but have other things going on in their lives that keep them from helping us a lot. 

On the upside, Beckett seem to be progressing much faster than in the past.  He is beginning to repeat words and communicate with everyone.  This is huge because his frustration level has gone down a lot.  He is following simple directions and beginning to problem solve. An example of his problem solving is when I told him to leave the chain to the light on the ceiling fan alone.  He would stand on the coffee table and pull it on and off.  When I wrapped the chain up so he couldn't reach it he jumped down and ran to the switch at the wall and turned the light on and off from there.  I was shocked that he even put two and two together.  But he seems to be figuring it out.

Behavior wise he has started to have more fits when he doesn't get what he wants or is trying to get attention.  His new thing is striping his clothes off and then peeing on the floor.  We have had a couple of incidences at camp where the teacher turned around to see what the kids were laughing at, and Beckett had his pants down to his ankles.  Now it's all fun and games.  I am also a little stressed about school starting. This year Beckett and Pyper will be attending different elementary schools.  Pyper will be going to her regular school and Beckett will be attending a new school that offers life skills.  It is a sister school in the same neighborhood.  We were quite upset when we found out that our school district will not bus Beckett from our daycare due to the fact that it is not in its attendance zone.  Funny thing is, the school he attended last year that was out of the attendance zone and he was at the same daycare and was bussed with no problem.  We will be addressing that with some higher ups in the school district. He has transportation that was agreed upon in his IEP meeting last year and haven't had an IEP to remove it since. So right now we are having to pay the daycare to bring him to school.  I am sure I will all work out though, it always does.

In the meantime while the twins were in camp I have been working on several projects.  The first project is with another SYNGAP parent and myself, We are working on organizing a non-profit foundation.  We are in the beginning stages right now.  We have submitted our name reservation, which it is going to be called Bridge The Gap- SYNGAP Education and Research Foundation. Our board members have been chosen and we will be submitting our next application for the establishment of an incorporation.  We will be very busy this year working to get it all together.


The second project I have been working on to raise awareness of a House Bill that needs to be mandated in to law. I have been visiting my Congressional Members of Congress to draw attention to this Bill.  It is called the HR 1591 The Charles August Long Undiagnosed Diseases Research & Collaboration Network Act of 2013.  This law is named after a 5 year old boy who passed away undiagnosed.  His name was Cal.  Doctors are still searching for his killer.  Here is a little background on this bill and why it is so important for it to pass.

Many families have been searching for a diagnosis for several years to no avail.  Giving physicians the ability to search a national registry to help diagnose their patients would be tremendously helpful to all of the families on the journey to diagnosis.  The waiting for answers and not knowing what a child’s future holds is tormenting for so many.  This tool would be a GREAT advancement in the handling of cases of individuals searching for a diagnosis.  Unfortunately, this cannot be implemented without YOUR HELP!
The bill, HR 1591, would help individuals and military Service Members and Veterans who have unexplained symptoms and medical problems by establishing an undiagnosed diseases registry. Currently there is not a registry that helps physicians and researchers diagnose and treat those with unexplained conditions. (http://www.urourhope.org/tag/hr-1591/)
It would also:
• provide physicians who are handling undiagnosed cases to search for similar cases and to network with other physicians handling similar cases in order to find a diagnosis
• enable physicians to cross reference undiagnosed diseases with other common diseases and rare diseases to help find a diagnosis, identify similar findings and potential treatments.
• help physicians and researchers describe prevalence of cases of undiagnosed diseases throughout the United States while making necessary data available, such as environmental, generic and occupational factors, that are associated with undiagnosed diseases.
• help physicians and researchers better outline demographic factors of individuals who are undiagnosed.

Please contact your representative and ask them to co-sponsor this bill. 
 

HEAR MY CRY!!!

Over the last few months I have been trying to find my place.  Asking myself questions of ,"Where do I start?  Who will listen?  Who really cares?"  I am learning that more people do care, but there is so much going on who has time to do much about another person's problems.  My steps have been small, but as I look back on two years of shouting to the sky, I feel like I have been heard.  I am so excited to announce that the group www.GlobalGenes.org has published my son's story.  I have been a volunteer advocate leader for them and trying to help raise awareness of rare diseases and rare genetic conditions. This to help inform the public to to pass legislation that will benefit the Rare Disease community and encourage them to contact our United States Congress.  If you would like to read the published story about my son, please follow the link.
http://globalgenes.org/mom-spreads-awareness-about-rare-syngap-1-gene-disorder-after-sons-diagnosis/

Please contact your US Representatives and ask that the pass the following legislation.

If you would like more information on the pieces of legislation being discussed please follow the links below:

House Bill 460:   http://beta.congress.gov/bill/113th-congress/house-bill/460/

House Bill 1591:  http://www.facebook.com/l.php?u=http%3A%2F%2Fbeta.congress.gov%2Fbill%2F113th-congress%2Fhouse-bill%2F1591%3Fq%3D%257B%2522search%2522%253A%255B%2522H.R.%2B1591%2B%2522%255D%257D&h=dAQEaOjeQ

In the meantime, Beckett has finished his Kindergarten year and is looking forward to a relaxing summer.  We are hoping that he begins his ABA school in July and looking forward to seeing his progress.  Since last summer we have seen vast improvements in his verbal communication and his cognitive level has improved. He is saying his siblings names so that you can understand them and is having a better time expressing his needs verbally.  He can following two word commands and understanding directions more so than he ever has.  We believe that since Beckett's seizures have been controlled his learning has increased at a more rapid rate.  I am super excited to see him grow and develop when he begins Spectrum of Hope. 

https://www.facebook.com/photo.php?v=10202000707371403&l=1997653894636273445

 

Beckett's Kindergarten Year in Review - He's Happy

Just wanted to share a short video of Beckett and his sister Pyper's Kindergarten year.  This is Beckett's favorite song by Pharrell Williams - Happy

Hope you enjoy!

A Different Perspective

Beckett and Daddy decorating Easter Eggs
Easter 2014

A new special mom friend shared this with me a couple of nights ago. A poem written by Emily Kingsley.  This mom happened to see it while her son was in NICU.  You may never experience the life of raising a special needs child. I am not a victim, I am not helpless. God has given me a purpose and a greater love than I have ever thought I could experience. A selfless love. A life of gratitude and appreciation. Not one to be bitter, envious, or selfish. I will admit that this is the hardest thing I ever have had to do. The strength I have is only through my faith in Christ. If I influence you in a way that is encouraging and one that builds, then I have done my job. I am no better than anyone else in this world. I do what I do because its to tell you that you could if you needed to too. If I died today and people spoke of my life, I would want you all to know that I would hope that those things above you would remember me by.
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Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

 

Please Help Us Raise Funds For Beckett

These funds will be used to help pay for Beckett's ABA school and medical bills.

Thank you in advance for your support!