Wednesday, February 20, 2013

Happy Birthday to Jupiter. Autism heartache and love.

  Jupiter is 11 years old today.   He has been officially diagnosed with autism for 8 of those years.   We have tried so many therapies and so many biomedical interventions and treatments.  Some have worked and continue to work and others were in hindsight a waste of time.  That's how it goes though.  You do what you gotta do for your spawn.   (the things that continue to work are the gluten/casein/soy free diet and his iPod touch with Proloquo2go app for communication)

being mellow and contemplating.  I sure wish I knew what was going on in that beautiful head of his.

  This morning as I was thinking about the day ahead I couldn't help but feel choked up and distracted.  My beautiful boy who was developing normally and then stopped talking and lost eye contact may never have the things I wish for him.  I worry that he will be lonely.....

  I sat alone in the bedroom and cried for a while.  Letting it all out.  With Jupiter its about balance.  There are lovely delightful things about him to balance out the heartache.  When I think about his life right now and whether or not I think he is happy, based on how he acts, I have to say I think he is happy.  He lives with people that let him be himself.  We love him and he is not picked on or made fun of.  He is included in activities and he is wrestled and played with often.  He fits well with us and we seem to fit well with him.   He has people all over the world that love him and ask about him often on Facebook.   I can tell that his therapists enjoy working with him.

  An overwhelming sense of compassion for other parents of kids with special needs came over me as I was sitting and thinking about my lovely Jupiter and our journey so far.  Some parents look at Jupiter and think "if only we had it so good."   Jupiter can use the bathroom independently.  THIS IS HUGE.  It may seem trivial to some but I feared for many years that I would be changing diapers and I am not.   He was not feeling well yesterday and he went in and threw up in the toilet. This too is huge.   For the most part he is mellow and laid back and likes to watch shows on the ipads and play games on the computer and spends hours outside.   He is always up for going somewhere is is pretty easy going when we are out.

  I celebrate the small stuff with Jupiter and even though it hurts my heart something fierce to think about his autism, I want him to be happy and content and I will keep working teach him how to find those things for himself.

  There have been some very low rough times where he was not able to attend school and was lashing out at others and himself.  We still see that sometimes and its so hard because it stems from his lack of communication.   So we work with him to use his "talker" and we plod along as best we can.

  That boy has taught me to love deeply.  He has taught me to be patient and kind.  He has taught me about loyalty and also  to remember to take care of myself when I get so wrapped up in others.   He has taught me to look for the upside, the silver lining, when times seem so bleak and sad.   He has taught me to come together when times are tough instead of drifting apart.  He has taught me to speak out for him and not be afraid to stand up for him and those in need.

  Jaymon and I have been to hell and back as a couple and some was just couple stuff and working through this whole human experience thing but much of it has been the constant stress of a child with autism.  We learned to come together although it is indeed a work in progress.  Autism has bound us together profoundly and with that perspective I am thankful for it.

  I sat and had my time of letting out the pain and then sat and did my mediation practice.   I thought of the functional things I can do.  I can work to get him into services and a good school.  We keep him on his special diet and keep his talker working and updated.  We research the technology available and those coming up so we can continue to figure out how to help him communicate.  I can decorate the house and get him some gifts and some candy instead of cake and we will celebrate him and his life so far.

  I have to focus on what I can do instead of how I wish things were different.  Of course I wish he could talk and that Sam didn't get jipped out of a sibling that he could grow up with the way the younger two boys have each other.   Sam has suffered too when it comes to Jupiter's autism.   
BUT we learn and we grow and we love each other.  What more is there really.
Happy birthday my Jupiter.  I've always got your back my son.
Your mama


Anonymous said...

A beautiful post! Full of love and compassion for your son, your family and yourself. Happy Birthday Jupiter and many blessings in the year to come!

Unknown said...

A Parent of Autism child feels very hard that how their child will be able to survive in this world, when he or she is even not able to properly interact with others.
But one thing which i want to mention is that don't be so negative about this disorder becasue mental experts says, that with continuous efforts and support improvements can be seen.
Reference: Autism Ireland

YogiKoks said...

Beautiful we have a lot in common !!!


God bless you Jupiter, happy birthday! My daughter Jamie is 9 years old and she was noy only diagnosed with CP, GDD, Epilepsy but Autism, I do understand the things you have been and gone through, stay strong, rely on God and be blessed! Take a look at my blogs as well,, thanks, Tonie

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