Seth story part one

 So  yesterday I  told  you about   what it used to mean  in America  to have a disability, and thus why we  should not use the  R word,  Well today  I   am  going to share with  you  a   story  of   a  Amazing  little  boy  named  Seth who used to live in similar situations, I am  happy to  report  that Seth has  been adopted into a loving family and is doing  quite well.  Seth's  mom  Laura   will  tell  us more.





I’m trying to think back to my life before Seth. Before adoption. Before cerebral palsy. It’s only been four months, but I have a hard time remembering what life was like. How did I fill my day, my life, my family, without this little boy? I know some things were easier, like getting into and out of a store quickly. But some things were harder, like getting my children to understand what a true “need” is, versus what a “want” is. Now that my children have met Seth, they understand how truly unimportant the newest phone is, or another pair of jeans.


Before Seth, I had very limited experience with disabilities. I knew next to nothing about CP. I didn’t go into adoption to find a child with CP. In fact, I didn’t really mean to adopt at all, and certainly not a child with CP. Seth and CP found us. I saw him while scrolling through a blog post that a friend of mine had written. When I saw his face, my heart dropped. He was mine. I knew it as well as if I’d given birth to him. He belonged to our family, and as crazy as it seemed, we had to go get him. It was only after that initial realization that I noticed he had CP and couldn’t walk. But he was a child. A child who needed a home. We had a home. We had what he most needed. Once your heart commits, the rest doesn’t matter.

Seth's family.   As  you can see  he is around love. This  is what EVERY child needs 

We set aside a night to talk to our kids. We have six biological children, ranging in age from 18 years down to 3 years. We called them all together and showed them Seth’s picture. We explained about CP, that he lives in an orphanage in Ukraine and we think we need to adopt him and bring him to our home. We had a variety of responses. One of our daughters, my most tender hearted, cried for him. Another daughter completely supported us but was very concerned about the length of time we’d be gone… seven weeks. We told them they can share concerns openly or pull us aside privately, but that we wanted to know how they felt. We have sweet children. They all agreed that this little boy deserved a life and needed our family.


Four short months later, we were flying across the world to meet our little boy, embarking on the biggest adventure of our lives. We knew Seth had been transferred to an institution three months previously, and we knew that likely did not bode well for him. Children with disabilities, and especially those who cannot walk, do not fare well in Eastern Europe orphanages. We knew Seth had likely been confined since his transfer. We were anxious, nervous and worried about his condition and what we’d find. We had pictures of him from right before his transfer. We knew what we should have seen when we walked in. The reality was far different. The reality took us back. Shocked us.

 Seth in the institution 

We learned that Seth had been confined to a wheelchair with the brakes locked, for three and a half months. He was in a room with three others, all in wheelchairs. No toys, no books, no conversation. All four boys were non verbal. Other than the sounds of moans, groans, and teeth grinding, it was a silent room. The sound of boys literally losing their minds. Our Seth had regressed fast. In fact, we didn’t even recognize him. The director had to point him out for us. He did not even resemble the boy in our pictures. He was slumped over in his wheelchair, not making sounds,not making eye contact, completely disconnected from his surroundings. Our minds raced with fear. This is not what we expected. He was like an infant. In that moment, we had to make the biggest decision of our lives. Our facilitator looked at us and asked us if we wanted to proceed with the adoption. Quiet. Racing heart. Brain numbing worry. Jeremy and I looked at Seth. A traumatized child. A hurting child. A child with some very serious problems. We looked at each other. And nodded. Yes. Seth was ours. Have faith.  


Stick around for part  two  of Seth story. Also Visit  Laura's  blog  

 Seth on the  move.      He  looks  much more  happier than   the pic above 

Conotation vs Denotation

I have a amazing  memory.  Literally   that is how  I am  able to share stuff from my  past with  you guys  and   that is the reason why   I  am  able to tell you  this story.

 I  remember the specific   moment  that I first  learned of connotation and  Denotation. It was in tenth  grade in  english  class.      A few years  later (2010)  when  I asked   a teacher  to speak about the R word  what  term  come to  mind   Connotation and  Denotation.      the students  were also  reading Othello so   I   used all three of those things to  explain  about the R Word.

  It really saddens  me  when  people  fail to understand the hate ful  affects of the  word  Retard.    You see growing  up   in  middle and high school  we never discussed  disabled  history. Growing up  we  never  learned   what     historically   was  ment  by the  R Word.

  Historically if    someone was  born  with  any type of disability  in the  United States  doctors  were told  to send their infant    to  a training facility away  from  family.    This  was not a school    it was  a  prison  where   it  was  common place to  see scenes like this

   And this

  That is  what the  connotation  of the  word  Retarded  was.  That is  what people  who were the  R word  were   subjected  to.  These  people  these kids  were subjected to   conditions  worse then  prisons.    These  people for no   apparent  reasson   other then  a dingoes of some kind  were  terrorized  and   lived  in  inhumane  conditions.

 The  Dictionary  term   can be found  here.  I will not post it because  the connotation is   way stronger.  When  people  say  the  R word    it     makes  those  poor  people  in  insitutions   suffer  even  more.  We  need to  teach  general  education   kids about this  painful  part  of    the  United  States  history because   this  is  still going  on  around  the world  today.

 To  be  continued

 In the  mean time  end  the word  or tell a friend about it

Funney People with CP part one

                 So   I am  thinking of  doing  a highlight of  famous people with CP  this  month.  Today's  post    is   of      Francesca Martinez               she is a comedian with  CP. She lives  in    the  UK and she is  really  funny.

The First day of middle school

 my Middle school logo 

 I  actually do  remember  a little  of my  first day  of  middle school.  I  remember  being   nervous because  I  thought  it was  on a huge  campus on a  hill.  I  quickly learned  that  was the high school.  My school was  in the   valley.  I  did not know  who my  one on  one aid was  so my  Mom walked me into school.   It  turned out    that   I had  my  old aid  from    fourth  and fifth grade, Ms.M,  I  remember my homeroom  was  English  class.  We  stayed  in English for two  periods.  My whole English class than   went on to  math  and  history class. Unfortunately  my aide  did  keep a communication book with my parents  but    I do not know where it is :( . I also do not have a lot of  pictures  from back then because the hard  drive is broken  and has not been  fixed.  If anyone knew me  in  middle school and has  photos  of me   from back then I would be grateful if  you  sent them to me.

Able to go to college introduction

             So    when I graduated  from high school  two years ago I was soo scared of what lay ahead. I  saw   my future as a abyss  and  I did everything in my power to  stay in high school.   What ended  up  happening was I  burnt a lot  of  bridges.  I had a  Flip  video    Senior year and  seeing the videos  today I am  ashamed of how I acted.      I see  both  sides  now  and do not blame anybody in  high school for   not    contacting me.

   I have been  taking  videos   of  my life as a college student. I learned in high school that you can   not film in class   so   most of the videos  I have  to date of  our   me  talking about college  life.    I am  taking college classes  and last semester, for the first time in a long time,  I have    gotten  mostly A's. I am    pulling out my camera  again, I  phone this time, but this time   taking a  weekly  video  about college  life.  My greatest hope is that  a high school student, especially those with CP NLD OCD or  other developmental disability can  see that     college is not scary and it is  doable   thus  they will  leave   high school  willing  making the  transition easier then  I  did .  Here  is a preview.

Thanks for stopping by but please stick around

  Today is  the  annual  Cerebral  Palsy  Connection.     I am  here to tell you  that     instead  of   getting  one day  of  stuff  on  CP. I  will be  posting  four  weeks worth  of  Cerebral  Palsy  information  about  my  life.  I will  be   posting about my  middle school  Memories    some  video    from  life as a college  , and  some  flashbacks     from the   past    20 years.  In case  you are  wondering  why      four weeks worth  March  is  Cerebral  Palsy  Awairness   Month   along with  the  all to  important  Spread the  word  to end the word. So  please  book  this  page  susbie   and do  whatever you need to do  so  you can  get   to this  page for the next  four weeks Mon-Fri.   I will not post  on  the  weekend. 

Living with NLD Past Present and future

 A   Filmmaker with  Nld  recently asked me some   questions  about  living  with NLD  because  she  is making a  documentary  about this    disability and since  have  not blog specifically about  my NLD  before  I  thought I  would  share the anwsers   with you  guys
This  is  a long  post  so    make  sure  you  have a lot of time to read 

 Me in   Kindergarten

* When did you discover you have NLD and how did it affect you in school when you were a child? Were you ever bullied because of NLD?

   I  was  born  prematurely and   was  diagnosed with mild  Cerebral Palsy  as a  toddler   I  received early intervention for  the  CP which  include   OT PT ST hippo therapy    My parents  could  tell that  I was   bright so  after I  Graduated from  the  county program   for disabled  preschoolers     I entered a  Private school for pre-k til  first grade

  Me in first  grade   shortly after  I was  diagnosed with  NLD

     When  I was in first grade    symptoms  of   Nld  started.  I  sat on my  teachers  lap   a lot and  needed  a  lot of  intervention.  I  was  still  learning but having a hard  problems  with  behavior    anxiety and of  course  making  friends.  I  got diagnosed  the  winter  of    first  grade  so     around  1998.    The school  did not  want me anymore  so  I left and  was in public school  ever since. I  knew  I had NLD    as a  youngster but   it  took until  I was  a  freshman in high school  to  understand what it  really meant   to have it.

  For the next  ten years of my schooling  I  had  problems  with   social skills   behavior problems  and  anxiety: however  I  was still in  the  general  education  classrooms and  I  am now in college.  I  was   bullied   all the way though  elementary school  mostly  because  of  my speech  issues  which  were from CP.    In  middle and high school  I was  bullied  most   in  special  education classes  which    teachers  thought  I was the  bad  student.


*How does NLD affect you know in the following areas:

       Executive Functioning/Organization Skills/Time Management

            Binders  are  a  mess 
       Visual/Spatial Issues (Getting lost, math, etc)

 College Stat test I  passed  it with a B.  With NLD  that is huge 

 I am  good with directions    but learning math was  extremely difficult for me as a elementary student.   in high school  I  really  struggled  with  Geometry   but I   got though  it and  passed it the first time.    I sometimes  bump into people.

       Social Skills—friendships
 This  has  been   a  hard  struggle  for me.     I  get my social  time with others  with disabilities   and  the whole high school drama  thing actually happened   outside  of school.   It was  hard because  of  clicks and stuff  that  con sits  of people of  all types of disabilities. My behavior problems  are  a part pf  this   and   for high school  this  was  part of  OCD  and  anxiety

*What's the most frustrating part of having NLD? How do you compensate for these issues?
  Lack  of  friendships are the hardest part for me.  I compensate by   going on facebook  and  blogging and  talking to myself

*Do you feel that NLD has in some way helped you in your life? How? What do you like best about having NLD?

I  know  what it feels like to be picked on  so   I think the   challenges  I  have  faced   have  motivated me to help others.   I  like  how   NLD allows  me  to focus on things  I  enjoy   such as  Toy Story   Harry  Potter  and  disability advocacy.
*I'm really impressed with you activism promoting disability rights in general and within NLD and CP communities? Why have you chosen to be this active? What do you get out of it and what do you think other get out of it?

 Me and my cousin  in  2007   the  year i  started blogging

   Thanks .    I  chose this because  I   started  reading  blogs of  parents   mostly   who had  children  with DS  and   it looked  like   a  lot of  fun.   That was  back in  2007 and some of those  bloggers  who  I  originally  read are no longer around. I get a way to express myself  and others  get a chance  to   meantime.   I  really  love being a disabled  advocate  and hope to   keep doing  it for Meany  years  to come
*Why did you blog about your life and why did you choose to include NLD/CP?    Those  were my disablites  at the  time   I started blogging    

*What would you like to do when you graduate from college?

 I want to be a special  education  teacher  that  helps  kids  with  developmental disabilities    be include  in   there high schools  for the Marjory  of their day  including  academics.  I am also   a writer so I might  write  a book.

* Are there any specific issues about NLD that you would want to see included in a documentary film about NLD?
  dating and  Nld  as  i  have never dated before  but would like to find a husband  some day
*What would you want an audience who's never heard of NLD to know about the disorder and about the people who have it?

  I like  parents and  teachers  to know that students  with NLD  are not bad  people  are not  trubble  makers I would also  say to  teachers  to  treat all  students  with  respect.  I am currently blogging about   my middle school  years and will go though  all  this   in depth later
*Are there any misperceptions of people with NLD that you would like to see addressed?

  see   above