Thursday, July 30, 2015

Because Fragile X is forever...

I know.  You're waiting.

Something profound. Something to touch your heart. Something to make you think. Something to make you understand.

I know.

I know I've been quiet.  I chalk it up to "busy" which is true both in life and in the "writing" in my mind.  I've written a hundred blogs that my mind constantly dictates, if only I had someone who could scribe my thoughts, we'd be set.

I know almost the entire month has passed and while I've shared facts about fragile x all month long on my Facebook and Twitter accounts, I haven't made it personal... I haven't let you "in" and I haven't blogged.  A few of you have even reached out asking me why.

When my children were diagnosed 12 years ago with Fragile X I opened up our lives in a very public way. Newspaper, TV, Radio, Magazines... every possible way I could think to reach out and tell our story, educate others, raise awareness, I did.  Selectively now, I still do.

There are multiple reasons it's more selective now but the one that is hardest for me to swallow is the biggest reality - because my children are no longer cute adorable toddlers.  They are now cute, adorable teenagers (well, almost for Allison - let's not rush these last few weeks before turning 13!).  People want to see babies, toddlers, young children who's lives need their help. Initially I saw this as a "sign" to step back and "pass the torch" but then I realized, my children don't get the option of no longer having fragile x just because they are teenagers.  They won't get that option as adults either. The reality is this is life long for them. No really, it's forever. For-ev-er. For as long as they both shall live they will live with the challenges of having the full mutation of fragile x. For always.

I didn't promise my children I'd stop when the world wanted to see younger faces, I promised them forever.  Forever I would advocate, educate and make a difference.  We have a long time left in that promise, my work is far from done... no matter how tired I am there is more to do on this journey.

It's an interesting new world, having a 16 year old son with an intellectual disability who still has 16 year old hormones. A 16 year old son who asks me every 5 minutes what I am doing and why I am doing it, is the same 16 year old who wants me out of the room so he has privacy while searching YouTube for videos that are incredibly different from the "Ruff, Ruff, Tweet and Dave" show that is playing on the TV in front of him.  A boy who spells at a first to second grade level can easily type "girl, swimsuit, bikini" on his iPad, auto fill in is his friend for the video options.  YouTube's parental settings are the furthest thing from perfect.  At the same time, he's 16 and a very typical 16 year old boy at that - his bedroom has posters of sports teams and girls in swimsuits. At a glance, you'd never guess there were more to his story than a typical 16 year old boy but there is, so very much more to his story.

As he prepares for his junior year of high school, his friends prepare to return with a driver's license in hand.  As they prepare for life after high school, I wonder how I will explain to him where his friends have gone as he continues on with school after graduation with job training.  While his peers begin to think of careers, I try to guess what Parker would like to do after he does finish school.  At our last meeting with the school, the local sheltered workshop was recommended for Parker's future.  While it's an excellent place where I have many friends that work - I know he is capable of so much more.  I've fought long and hard for inclusion that continues after graduation as I find the right place in our community willing to employ him.  In all honesty, when this crossed my mind when he was 5 I thought more options would be in place by the time he was ready to make this transition... it depresses me that I was so very, very wrong.

The reality is Parker will always need assistance. Always, throughout his entire life. It's incredibly difficult to admit and it's not that I or anyone else has failed him.  We haven't and he has not failed us.  He continues to learn, continues to grow, continues to exceed expectations.  We continue to push, raise the bar and well... hope and pray, a lot.

Thank you, Lisa Lawrence for this beautiful graphic!
I thought that every parent worried about what would happen to their grown children when they were no longer here.  After a lengthy discussion with a group of my friends who all have typical kids, I learned nope... that's just me.  They know, as adults, their kids will be ok.  They will have the skills to live independently and carry out full lives.  They "won't be needed" which is kinda sad to me but I guess, I understand that too as my goal is for Parker to live independently one day while I am still here so I know that when I am not, he will be ok without me. (As ok as one can be without their mom anyway).  At the same time, there are things that scare me to death that they have never had cross their mind.  Things that I thought were only worries when he was little but as he ages I know are concerns for his adult hood too. I have to continue to do the one thing that is hardest for me to do when it comes to my children and other people... trust.

When your child is non-verbal, or like Parker limited-ly verbal, you put a huge amount of trust in anyone who spends time with them when you are not there.  School, camp and in Parker's future someone to assist him with daily living skills, either in a group home or as a personal assistant.  One day, I won't be here to help him and all of that will fall on others, likely strangers who I have to learn to trust. (or figure out how to haunt after I'm gone).  His sister will, I know, do all she can to be sure he is safe and well cared for but her life will go on too and she will need to care for herself and her family.

I have so much to teach Parker. So much to teach the world around him so over the next several years he'll be ready for his independence. It's a long road ahead, it's been a long journey to this point and there is a very long way to go.

I know he's now a handsome 16 year old, his sister a beautiful almost 13 year old - many of their challenges and struggles are different now - some are the same.  Anxiety still rules our lives.  It will always be part of us. Sensory issues are a daily treat.  Aggression is still there for Parker.  Depression loves to run rampant. Medication is part of our life. Routine and schedules keep us sane. Laughter still takes over each day. Love will always conquer all. Worry creeps into the shadows of each day, knowing that tomorrow we are one day older, one day closer to those next steps.

I'm not sure what Parker's life as an adult with a disability will look like.  I know he will have a job, I know he will be active in our community. I know he will want to be with his friends. I don't know where his friends will be or if they will stay in touch after school.  I am sure, like with all of us, new friends will come and go throughout life but I hope that many that he has made will forever remain with him.

When I started this journey, I was alone. I was creating new paths on my own.  Now, the mountains I climb are surrounded by a beautiful sea of amazing friends who all walk this path, who all pave roads, who all strengthen and inspire me. I'm not alone. They are not alone. Our children, while often living states apart, are growing up into adults (and some already adults, even older than me!). Together we will change the way disability is viewed in adults, because it's not just the little ones who are adorable and need your support!  :-)  It's a life long disability with challenges and successes at every single step of the way.  It's a journey we will share and hope you will support and join us as we bring understanding to life - all of life - with fragile x.

We've been forever connected by a disability we knew nothing about.  We've changed our communities, educated professionals and participated in research.  While our children are growing older, there is still a lot for us to accomplish.  There are still messages to share, hope to hold onto and a difference to make - and together, we will do that.

We can't do it alone.  All month long I've asked for your support.  That continues today and every day.  July is Fragile X Awareness Month, an entire month dedicated to teaching others about Fragile X.  We have a fundraiser set up specific for this month.  I beg of you to please, please donate to it here at our Crowdrise link .

Please take time to learn more about Fragile X and support the efforts of the National Fragile X Foundation here.

No matter the time of year, your donation can make a difference, please give when you can.

The reality of our lives is simple.  Fragile X will forever be a part of it.  My children will one day be adults living with the full mutation of fragile x.  I will forever be a carrier of the pre-mutation. I will likely face other fragile x disorders in my life including FXPOI and most scary of all FXTAS. Very little in this world scares me more than FXTAS and the effects it could have on me.  So much so, I won't blog about it but you are welcome to read more about it and I encourage you to do so.

Fragile X disorders bring challenges to multiple generations of a family at one time.  While our lives are beautiful, they are challenging and there is so much needed to be done.  That takes money.  I wish it were free.  I wish research was free. I wish education, advocacy, awareness and support were all free but they are not.  Our future and the future of over 1 million people in the US alone are counting on us.  The National Fragile X Foundation needs your help to make a difference.

Please.  Be a part of the difference and donate today.

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