Today we are being interviewed with our local paper about our Canine Companions for Independence experience, my Ty, the issues he has and how Gretchen has and will help him.
I love being able to tell our story because well, it's anything but typical, anything but easy, anything but what it just simply is.
But I also find, telling our story, Ty's story starts to open a pandora's box for ME!
And sometimes that is just hard.
it's a reminder of all the struggles and challenges we've been through these past 10 years, the constant battles for proper medical care when he was little little
Then we moved onto the constant battles with the school system
and all the things of life with Autism and cecostomy brings to us.
And in one way I am absolutely amazed at how far Ty has come... so many challenges, and so many things he has overcome
and also a reminder of how many challenges he continues to have, and the constant struggles he experiences every day and some days it feels so helpless as his parent because he's 10 and when he refuses our help, what are we to do?
So a bit nervous opening up all those old wounds for me, all the really tough memories of what he has gone through,
and what his journey will be in his future!
Which if you read this blog, you know we really do not "think" much about the future.. it's too hard
We absolutely live in the here and now and take each moment as it comes!
But I understand that is hard for many people to understand and people question how we are "prepared" for his future!
and I simply have no answer!
School, yeah I know, he doesn't go to school... we've tried it and look where it has ended him!
So again, we have had to figure out things on our own, with lots and lots of push backs
and not by the experts, by people who THINK they know, and in reality- no one does!
Today will simply be another reminder of how unique my son is, in so many ways
But it's also a reminder of our continued and constant struggles with him everyday
how it affects our girls
how it affects our marriage
how it affects each of us within this house!
I've never lied and said "it's so easy" because it is hard.. it's hard all the time, just to different degrees ....and we have the good moments thrown in there!
But when you have a 10 year old boy who struggles with so much in life and didn't get "early intervention" as HE SHOULD HAVE..... despite us banging down doors left and right to get help for him
and finally at almost 7 starting behavioral therapy
and of course have learned SO MUCH about him and his needs and struggles through these years... and honestly YES we are the experts in him...
we may not have any degree that would be considered an expert, but trust me... everything we have ever said about our son, has been and remains the exact truth... despite not understanding it by the experts... to the degree it is... his issues have been the same issues since before he was crawling, walking, talking,
and then they just have been magnified with him growing up!
He has made incredible progress, it's patience and time and more patience that WE have dedicated to helping him-
and believe me it's usually not easy- but ultimately we've seen incredible growth in him... sometimes it takes lots of steps backwards to remember and realize the growth, but it's there, trust me!
But again, as far as the interview goes today, it's opening our crazy world to the community- and that's not easy to do.
People always ask (when they see us out and about)... wow that's great, just the beginning, what's next, ... but reality is many times it's a set back that is next...
Just like this week was after an amazing week of basketball camp last week!
That's just reality... and he was at Basketball camp, because we felt he could do it, we felt he was capable of experiencing it without too much behaviors and fall out
And getting through the camp is the easy part, it's the after that everything falls apart for him.. he has no more reserves for even the tiniest of stimuli, and that is when he blows... the smallest of things because his cup is already full from all that was taken in during camp- and it's not about the basketball, there are lights, there are holler's there are buzzers, there are kids everywhere, moving quickly unpredictably, there are coaches yelling to get attention, there are balls dribbling on the gym floor, even fire alarm's sounding for a drill (yes that happened- ugh)
So despite his amazing skills for basketball- his reality is all these OTHER things make it really hard and he struggles to filter out all the things that are happening around him that cause his system to become over loaded!
I told the coaches that they need to pretend that Ty cannot hear and to help him visually by giving him cues, hand gestures, etc to communicate... he simply turns off his auditory system (which is great, it's what needs to happen for him to be able to be in that environment)
But he is simply not listening to any directions, or anything, he is visually watching for cues on what do to next, on where to go, he's watching the other kids on what is happening
and luckily the amazing staff got that.. and wow it really helped him-
but that doesn't mean "he was able to filter out all those extra noises and stimuli that overload his system and then create an inappropriate response to literally some one just talking normally, or chewing food normally at the table, every little thing at that point becomes an absolute struggle- just because his system took in way too much and now he's overwhelmed and responding (over responding)
So, this week was tough for this reason, most people do not understand this aspect at all,
they see the hear and now and see he did camp...
but we are his parents and we know he's on edge, he's irritable, he's not sleeping as well, he's very quick to react negatively to pretty much everything
and this is our everyday reality
and we will be opening this reality up to our community- and yes Gretchen is helping tremendously, and yes he continues to make giant strides (because 6mo ago he wouldn't have even been able to tolerate the camp setting, let alone for 1 week)
but our story is unique, our story is well, not heard of very often if at all!
But are we really alone with our story or is it that families like ours just can't "get out" and be seen much by the community and therefore are hidden in our own bubble!
Because for us- our paradise is in a bubble!
And it doesn't always go so well when we "break through the bubble"
But sharing our story may just help even one other family, bring more compassion for what others experiences are
shed a light on Autism (because when all you hear is "he doesn't look autistic- ugh we clearly need more education in Autism)
When a family like ours struggles, well simply it is nice to just have people smile at you rather than glare and stare and judge!
Compassion goes a long way in the special needs world
and by telling our story, Ty's story, sharing how Gretchen is helping him and our family, and what we hope for in the future now having Gretchen
well, maybe it will just help one other person who reads the story. Maybe another family will get the energy to "look into getting a service dog for themselves or their child"
it just might invite compassion among our community so that it's not so difficult to get the proper medical care and the proper educational services for all of our children who NEED IT!
It might just spark a conversation about what our community is doing to HELP kids like my son, and if there isn't much being done, how can the community come together to change that. My son is not alone
I know so many kids who struggle - it doesn't matter what the cause is but they all have some sort of special need and very rarely do I hear
the parents are happy with how things are going, services are appropriate and effective, etc...
So maybe just maybe by telling our story, and although it makes me a bit nervous to open this up outside our bubble world
maybe things will begin to change for the better when it comes to families who need help with their special needs kids!
and that would be worth every open wound and tear shed.
We always have said and continue to say we love our children, we love our only son and will continue to FIGHT every system that stands in the way of him getting the help he needs... no matter what! We will never give up on him
we will always be there supporting him! And we will continue to keep our family moving forward, and try to bring more smiles than tears, to bring "normalcy" to the girls world, but also show them that yes our family is unique and different
and that's okay- it's not the "things" that bring a family together- it's moments like laughing around the dinner table, being silly, or simply sitting on the couch watching America's Got Talent as we did last night together!
Those are moments. Those are precious memories! That is what they will remember!
No comments :
Post a Comment