There are times in life when everything a person thinks he/she knows is challenged. Undercurrents suck them under and threaten to pull them into a bottomless sea of despair. It can sweep away every trace of reason in a matter of seconds. That's WHY the wise man built his house upon a rock.
But what happens if you pick the wrong rock with the best of intentions, only to discover that the foundation is about to crumble?
I had a nice family. 2.5 kids, a 3 bedroom house, mini van, decent job. I thought I had built my house upon a rock. With all those items piled high up on top of my rock, I never thought my foundation could crumble. But over the years with Autism, I've found that my "foundation" wasn't always built upon the rock that never fails. Often it was built on endless other "rocks," trusting other people, trying to believe that no one blamed me for my son's disability, trying not to blame myself, or worse God...etc. The rocks are so endless. Here we are again, with another tsunami about to blow, and I'm wondering if my rock will hold.
This year we're "aging out" of the schools system. That means your child/adult is 22 years old and well everyone is wiping their hands of the situation. They're sighing with relief and showing you the door. They are so glad they are done with YOU! The family who brought the definition of Autism to their first ARD meeting, while stunned teachers, and administration stared aghast, wondering what new horror this disability would bring! YOU, who sued the district because your son HAD TO HAVE Digestive enzymes just to eat! YOU, who forced a middle school to actually BUILD a classroom, because putting special needs kids in a modified kitchen just wasn't good enough for your son. YOU, who taught many teachers and aids, that working in Special Ed was no longer a sit down, "take care of children who can't move from their wheelchairs kind of job! YOU! Most school programs and certainly the district treat you as if YOU created this thing called Autism. YOU brought this to this school, and YOU (and your son) should pay for it. Trust me, we pay for it, and pay for it and pay for it... But more than that, our only son pays for it! The tsunami winds have blown for years on our rock! I often worry that it will be too much to bear. "I was sure by now, you would have reached down, wiped my tears away, swept in and saved the day. But once again, I say, Amen, and it's still raining."
I want to attempt to pause my talking about the storm, with some incredible positives about some of the heroes who have withstood many storms by our sides. There are so many miracles, so much good God has brought into our lives, like when He moves on others to understand, to love, to truly care with their whole hearts. It is amazing how far Britton has/will come. I'd like to give credit, where credit is due. Britton has had some FANTASTIC teachers pass through his life. Teachers who have more than cared, they have loved him, truly and completely. They have fought major battles, planned, hoped, even plotted with our family to try to get around so much political bureaucracy. IMPOSSIBLE to do. God BLESS the wonderful, precious, AMAZING teachers who have loved my son. There are no words to describe my gratitude for your selfless love. May the God of all Mercies reward you for being His hands! You help me cling tighter to the rock.
To one extremely special woman who has been part of our sons life for the past SEVEN YEARS! We love you! YOU are an angel sent from God. You love our son as your own. You stand by him, love him no matter what. God must smile when He watches you. I know I do. I tell God should I have any reward in heaven, He is to give it to you. You are the best of what God created us to be. That is a HUGE part of what strengthens my hold on the rock!
Now, here comes my tsunami about "Aging Out.."
Then his immune system failed, and we hid him from the world as best we could, so we didn't end up in the hospital even more months. Repeated bouts of chicken pox, measles, flu, viruses, we lost count how many times he had them. We stayed in the house, away from family, friends, school... those were some dark years. The storm pelted us those years, always threatening to suck us under! The doctors didn't really know what to do, so they inserted a central line, and we did IV drugs around the clock. Then we "aged out" of that storm and the rock stood firm. (Truly God intervened again, and his body began to make functioning antibodies, a real miracle. There is no other explanation. "And as Your mercy falls I raise my hands and praise the God who gives And takes away."
One sentence hardly gives justice to each of those phases. The difficult years, the battle scars the whole family wears. We are battle weary. So very tired of fighting the storm! But it doesn't matter because it isn't going to get any easier. "Aging out" for us just means, (yet one more time) we must figure it out first, because we are the oldest of the "autistic" children. No one has passed this way before us. Holding onto our raincoats, batting down the hatches, waiting for the next wave the size of a small mountain. Praying one more time for the "house on the rock" to be standing after the wave...
This past week I sat in Britton's last ARD. One more time I listened to the nonsense, thinking how bitter I was. Every question was really just rhetorical to finish the paper work. They always PRETEND there is some kind of transition plan. I'd laugh but it makes me so sad and desperate. For FIVE YEARS they have been writing that Britton will work at our clinic folding towels. (Feel free to laugh) I'm sorry it's just so ridiculous. Even they are at a loss. This year they asked me, "Is that accurate, is that okay?" I just laughed and said, "it's not true, it hasn't been true for the five years you've been writing it." They KNOW it's not true. They KNOW he can't possibly spend hour upon hour folding towels. But as they say every year, "We have to write something." Again, ridiculous!
Is it that the TRUTH is too hard to bear? It is for me! But they have to write "something" to make themselves feel better, and soothe the states feelings. Glad to help them "feel better" I guess.
My eye has been twitching for over a week. It started in the meeting and now just won't stop. I was thinking how every single parent who has sat through an ARD meeting should receive counseling for Post Traumatic Stress Disorder. It's like being caught in a flood and not one person standing there with a life preserver in their hands, is willing to throw it to you.
The best part of the ARD was that the principal was absent. Ahhhh relief... I felt a tiny bit more at ease. (Most likely she was afraid to come, because she believed, I was at liberty to speak my mind without her taking retribution on my son.) I'm not saying she would, or she has, (well not out loud) I'm just saying it's every parents fear. Let's be honest, I'm not at liberty, not now, and not ever!
It breaks my heart that my son, will not be able to tell his side of what life was like during school, I'll have to wait for heaven to hear it. It's not that the principal/administration hates my family specifically. (they do, but that's beside the point.) If you ever make waves, e.g. sue the district for what your child needs. You are labeled as trouble and everyone walks carefully around you! YOU! How dare YOU! Try to save your son? How dare YOU, make sure he can digest what he eats! How dare YOU, fight like a mother bear to give him one tiny shred of decency! It might cause others to DEMAND that decency for their own child! HOW DARE YOU! The tsunami continues to blow and my family, we cling to the rock. It is the only real shelter.
" I remember when, I stumbled in the wind. You heard my cry to you, and you raised me up again. My strength is almost gone, how can I carry on, If I can't find You?"
I have found no mercy, no kindness, no gentleness when it comes to Administration and Special Needs. They won't even consider what might really be helpful in the future. That's your problem alone. It's too scary to let "those kids" out in the public. Too risky to do what will have to be done by their parents for the rest of their lives! "Too bad we could have helped, but it was too much risk..." Nope, no taking risks, after all it's not their child the waves are sucking under, and they just refuse to care that much! Perhaps our district, "Aged Out" when autism showed up. I did request that they just reorder the comments on his final paperwork. Talk about the good stuff FIRST! How about on the FIRST PAGE? It was so obvious to me, but to them it was like a revelation. "Oh we could do that. " We could talk about his accomplishments before we assassinate his character completely! What a novel idea. I felt I could Breathe for a minute. My rock again, stabilizing, holding me steady.
It's still stunning how little even those who supposedly work with autism, understand it. It's not easy, it's an extremely bizarre, strange condition. Because only half of them can talk, we rarely understand their prison. When Britton gets highly agitated and extremely upset, I always begin the process...What is happening? Is he sad, is he hurting, is he afraid? We rarely ever know. But one thing for sure, as Jesus would have me do, I put myself in his place and treat HIM the way I would want to be treated. An old fashioned belief our entire society "aged out" of about fifty year ago. I often picture myself as autistic. I can't imagine many days when I wouldn't at least try to "chew through the restraints." Because autism is a sort of prison, and it's a life sentence. It takes autistic people a lifetime to teach the "normals" what the rules of this prison are. I will spend my entire life learning, because you see, it's a life sentence for my whole family. I have a friend whose son is also autistic, and she always says, "Not DEAD, can't quit!" That pretty much sums it up. We aren't allowed to die. On top of the terror of him trying to live without us, how do we "dump" him and his disability on someone else? HOW? It's far too much to ask, and yet... the day will come. WE will "age out" of life, and someone else will be asked to help Britton finish his course. To help him hold to "the rock." The storms will continue to rage even after we are long gone.
"But as the thunder rolls, I barely hear You whisper through the rain, "I'm with you." And as Your mercy falls, I raise my hands and praise the God who gives, and takes away."
I'm praying that much will have changed by the time I breathe my last breath. That there will be a wonderful place for the kids damaged by so much injustice, and that we will leave behind a lot more understanding. I am willing to devote my life to build such a place. What I wouldn't give to open the eyes of "the normals" who would rather not believe the truth because it's just so much easier not to. I'd like to finish this rant, I mean blog, with a thought you probably never would consider. I often wish I was "a normal." I wish I had the luxury of not believing that vaccines damaged my son. I wish this year he was graduating college...I wish I could live in my perfect little world where my biggest concern was how to pay for college and save for retirement. Lots of days I grieve the loss of what could've been. The loss of who God intended Britton to be. But then I look at my son, and know he paid much to high a price for me to sit here and lick my own wounds. So until the truth is told, I'll be over here yelling at the top of my lungs over tsunami waves; "LOOK AT AUTISM! It's not going away because we "Aged out!!! It's EVERYWHERE!!" At the very least 1 in 88! And the thunder rolls...
