Thursday, April 26, 2012

life update (and why my Mama is my hero).

My mama has flown back to New York... and I cried the whole way home from the airport.  I'm begging mama to come back in June.  Maybe end of June, early July, at the latest.  I need my mama...   But unfortunately, there is a lot going on with my sister, Caroline right now, so Mama can't just hop a flight to Lisbon for an extra vacay and grandbaby splurges...  

best thing my sister has ever said to me... when
she was about 11, she was already taller than me.
she looked (down) at me and said, "jax... now i'm
the big sister."  OMG!!! <3 <3 <3

My sister Caroline is 21 and in a therapeutic boarding school in Western Massachusetts for children (and young adults) living with Autism Spectrum Disorder.  Since about the age of four, Caroline has been diagnosed with PDD – NOS (Pervasive Deficit Disorder - Not Otherwise Specified) in the Autism Spectrum Disorder.  Because of Caroline’s developmental disability, this is as "close" as a diagnosis as we have ever found.  Her behavior fluctuates between violent tantrums and attacks, to normal teenage drama, to the emotional responses of a pre-teen.  The State of New York's Special Education Department is required to assist in Caroline's education until the end of the academic year (August 2012) when she is 21 years of age, and then they will help in assisting my parents in finding a suitable living environment as she transitions out of "school" and into the rest of her life.  Upon “graduation,” my sister is no longer the responsibility of New York Educational Department and they can just wash their hands of her. In theory, she will “transition” from a structured school environment to an “adult life” in a “structured residential adult program.”  Caroline will never be able to live a "normal" life, live on her own, have a job, have normal relationships, etc.  I don't even know if she is truly capable of living in a group home and maintaining any sort of employment (assisted or not.)  All I know, is that for the last 20 years, my parents have been doing everything they can to take care of my sister, spent astronomical amounts of money on schools, therapies, lawyers, etc.  How much help any of it has really been, I don't really know.  But I do know that every single day, I have watched how the stress of having a child like Caroline has affected my parents and my family.  This is the home stretch for my parents, and my Mama deserves a medal of honor, for everything she has done for my sister.  For the last year, my mama has been fighting all over AGAIN with doctors, lawyers, therapists, and agencies and the bureaucratic jungle of bull, to do whatever it takes to find a suitable place for my sister, come June?  August?  She is quickly aging out of the New York State Education System, and will ultimately be someone’s responsibility afterwards…  We have known for years that sooner or later, my parents, along with Caroline’ long list of educators, will need to establish a supported residential transition plan, aka “the plan for the future.”   In these final months of her last official “academic” school year, this plan has yet to be clearly established… THUS the panic… Coming home is unfortunately not an option, as my parents do not have the emotional, nor physical strength to restrain my sister when she has having a violent outburst, punching walls, throwing furniture because she has been asked to brush her teeth and get ready for bed, they cannot afford to spend days on end with credit card companies, explaining how their autistic daughter has stolen their credit cards, hijacked my mom's Paypal account and spent over $700 on (true story...), nor can they emotionally handle the repercussions of her refusing to take her anti-psychotic medications (and what happens when she doesn't....) Nor should they.  I can go on and on and on, but I don't want my Mama to read too much and get depressed...  I just wanted to say that my Mama is my hero, for all that she has done for me, my brother and my sister, and how proud I am of my father, who has especially in recent years, really stood up tall with my mom, I think finally realizing in the last 10 + years, how much of a "situation" my sister really is.  (We've always known, but in the last 10 years, there has been a huge shift in how strong of a team my parents are, particularly in dealing with my sister's developmental and psychological issues, etc.)  ON TOP of it all... As most of you know, Mama was diagnosed this past October with bladder cancer.  On top of everything else, she has been at the hospital for her weekly treatments which have been greatly successful, though the stress of this next phase of Caroline’s life is so incredibly ill-timed….  Naturally, when all this is going down, Mama will be resuming further treatment in August.  When it rains, it pours…………    

caroline grace
august 13th, 2011

Sadly, not all of the people in our lives are sensitive to how much my parents struggle in dealing with an adult child like Caroline.  Friends and family can see just how much my parents have struggled and lived with, by raising a kid like my mostly wonderful little sister Cappie...  She has her moments of AWESOME, and at times is the most sensitive, brilliant and intelligent young lady, who fiercely loves and defends her family.  So in the next two months, please keep my parents, but especially my Mama in yr hearts, prayers, thoughts, etc., (whatever you may believe) as these next two months will be the deciding factor in the rest of our lives, in terms of Caroline's living situation, and ultimately how my parents lives will play out, in terms of Caroline.  (Am I still making sense?)  


Sometimes, I wonder if my parents regret adopting three kids… As much of a joy we are, I know that we have certainly put them through the ringer… And when you adopt a newborn baby, you never anticipate, years down the road, where we have ended up with Caroline today.  It is truly unbelievable, how lucky all three of us are, but especially Caroline, for having parents who are so dedicated and willing to do anything it takes to have the best life possible… Including going up against NY State government agencies to provide the necessary support for their disabled daughter.  My sister’s biological parents were living out of a car in Texas when she was born, and we think that her developmental disabilities are the result of drug use during pregnancy.  Caroline would never have had a chance if it wasn’t for my parents. 

Anyhow, thank you Mama, for always fighting for us, even at times it was fighting with us....  And as much as I hate to admit it sometimes, my mom has always been right... in the end.  About friendships and relationships, my education, life plans, etc.  How do mama's DO that???  Damnit.

my beautiful mama. august 13th, 2011

But back to my positive hopes for the next few months...  Mama please come in July!!  DON’T give up the fight… DONT LOSE HOPE… we will find a place for Caroline!!

and then come back to Portugal to RELAX and help me finish decorating the nursery for your first grandbaby. <3

Happy Mother's Day!!

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