Friday, May 11, 2012

Special Needs Spotlight: Penelope and Lincoln



My name is Michele OBrien and I have three incredible children: Ruby, 12; Penelope, 7 & Lincoln 3. Two of my lovely babies have a genetic disorder called Fragile X Syndrome. Fragile X affects about 1 in 4,000 males and 1 in 6,000 females born each year; these numbers are approximate since it's assumed that many, many cases are unreported.  Fragile X is a terrible name for a really very complicated disorder. People are affected along a spectrum and no two are exactly alike though they share many similarities. Because Girls have the gift of a good X chromosome along with their affected one, they often experience fewer and less severe than their male counterparts.  Fragile X messes with a protein in the brain that interferes with normal cognitive and motor development.  My middle daughter, Penelope, struggles with OCD, anxiety and managing the emotion of fear; really common issues shared by most people (male and female) with Fragile X. She is also a delicate, sensitive, gorgeous child.  My son, Lincoln is moderately to severely affected as all of his body systems bear the Fragile X stamp. He has terribly low muscle tone throughout his entire body. He has poor vision, was a slow still awkward walker. He speaks at the level of a typically developing 12 month old and he has a learning disability. He is also the greatest gift we could have ever imagined.  If you would like to learn more about Fragile X, go here: www.fraxa.org and here: www.fragilex.org

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Miggy:  Michele, you are in the unusual situation of having 2 children with special needs so can you tells us a little about when they were diagnosed?  Were they diagnosed together, or did you have one child and find out later your other child was also affected?  How has your perspective changed since those initial diagnoses?  

Michele:  Our baby boy, Lincoln was diagnosed at 17 months in June of 2010 after a year of hospitalizations for fevers & ear tubes, 9 months of Early Intervention services, fittings for orthotics, hearing evaluations & a year and a half of utterly sleepless days and nights (He'd only sleep for 2-3 hours at a time. Ever.) . When the dust settled a bit our pediatrician asked if we were interested in finding out if there was an etiology for all of his issues. We were. He recommended a neurologist and within weeks we were dealt the news; it was a bowling ball to the chest.  

Penelope, our middle daughter was diagnosed in December of 2011 when she was 7. We suspected she was a full-mutation, it just took us a while to bite the bullet. Again.

My (our) perspective on life, our life with these kids, was not only changed, it was smashed to atoms and rebuilt bit, by bit, by bit. Grief is a voracious beast and we fed it for a long time; mourning desperately the children we thought we had. But now we know we have the children we were meant to have. It's a pretty spectacular realization!


Miggy:  Explain how Fragile X affects your family’s day-to-day life?

Michele:  Oh lordy! What doesn't it affect? Penelope has severe anxiety and OCD. Things need to follow a pattern for her. We are not pattern people so this has been a pretty steep learning curve! Wake up times, breakfast, dressing, waiting for the bus, and then our routine when she gets off the bus in the afternoon till it's time for bed. It's ritualistic.  Today at work I was telling one of my friends about the emotional trans-atlantic flight she took over her homework this week.  And as I'm recalling the moment and describing the detailed steps we need to take with her, she reaches out her hand and took mine and said "Oh, honey! You are never "off", are you?" That pretty much nails it.

And with Link he can often become hyperaroused and need to be re-calibrated. We spend a decent amount of time feeding him a sensory diet to keep him balanced. He goes to a really incredible school about 30 minutes from our house and we drive him every day. 
                                                                                                
          
Miggy:  What are the biggest worries you face for your children?
   
Michele:  That they will be able to fall in love and have someone love them back in a meaningful way.  And that when my husband and I are gone that they (especially Lincoln) will have a safe place to live and not be mistreated in any way. It keeps me up at night. 


Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?  

Michele:  When I was having the initial meeting with our oldest daughter's new guidance counselor at her brand new school, Link was starting to tweak (I had to bring all three kids with me) so I plucked him from his chair and plopped him on the floor in front of me, tucked him in between my knees and began "pounding" on his torso and legs like a cartoon-dough-puncher-machine all the while keeping eye contact with the counselor and not missing a beat of conversation. That kind of thing happens all the time.


Miggy:  How can people best approach or respond to your kids? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Michele:  Be patient, be kind. Don't assume my screeching, flailing, crying son is badly behaved or poorly parented. Have compassion.  Because if you say something to me about how my kids are acting, I may not have any patience for you :)
 

Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?    

Michele:  That there is no plan.

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I want to thank Michele for her spotlight and for sharing her precious Penelope and Lincoln with us.  I really, really love her advice at the end to be patient and be kind when we're out in the world interacting or just noticing other parents and their kids.  We never really know what's going on with other people do we?  

As always if you or someone you know would like to be a part of my special needs spotlight series please email me at thislittlemiggy at gmail dot com.  

Have a great weekend!  

4 comments:

  1. I have a blogging friend that has Fragile X and so does her son. She is a teacher.
    I am enjoying your featured families. It is so amazing how we love our children no matter what. Those parents without children like ours have a hard time imagining.

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  2. I really appreciate Michele's post, particularly regarding not judging the child/parent when the child acts out. I've experienced those mean looks and judgements. Caring for a special needs child can be so trying and the judgement of others has deterred me from going out at times. May we all grow and learn from these precious children we are blessed with.

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  3. I second what Kristi said. Half the battle of going out with my precious son (I have two sweet boys - the oldest has Fragile X Syndrome), is preparing myself for the judgmental glances and comments. It is emotionally draining for me but I don't want to keep my son from experiencing life simply because my feelings get hurt. I want others to learn from my son and see what a beautiful person he is. Great post!

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  4. Thank you for sharing your experience. It has helped open my eyes about everything!

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