Continued Support for Team Jonah

A letter to our son. Three years ago we lost you. Not the physical you. But the child we knew before this disease took you with a vengeance. We watched you slip away, little by little a few years prior. Not knowing what was really happening to you. Reluctantly shoving mental health meds down your throat and being told by doctors "This is just autism"... and we believed them. It wasn't until you had slipped away completely overnight, we knew something was horribly wrong. It's not normal to wake up one morning with debilitating anxiety and OCD. Yes, you have severe, non-verbal autism diagnosed at 18 months old, but this was something completely different. Your dad and I fought hard to push for testing and get answers from your pediatrician with no luck. They referred us to a psychologist who wanted to try more meds (which we did) but nothing ever worked. It took us about a year of desperately researching your symptoms and connecting with other parents who were going through the same thing, to finally figure out what was going on. Through these connections, we found a doctor (one of only a few in WA) that was familiar with what you were suffering from and you finally received a diagnosis...Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep...YES!! We were so unbelievably relieved that we had an answer. It had already been 2 years of you missing out on school, and dad losing job after job due to your intensive needs at home. Your severe anxiety, OCD, and aggression cause you to be extremely difficult to manage for one person alone...which we want you to know is from no fault of your own. We know it's not you, our beautiful son, it's this disease. Fast forward to today...another year later...and we are unfortunately in an even worse place now. The different antibiotic treatments, supplements and regimens we have been trying have not worked for you.  As with everything, they seem to work at the beginning (the ones we can manage to get into you), but then sadly, they fail. Our days now consist of just trying to keep you happy....driving you around to outdoor places that you enjoy (sometimes twice in one day), and getting you the food that you want.  But you don't even enjoy those things anymore.  We risk your safety, ours, as well as the safety of others anytime we step outside of our home.  So mostly we eat in our truck, drive around, and watch life from afar in the safety of our vehicle.  We are exhausted from trying to avoid a daily attack or meltdown by consistently giving in to your demands...it's what we have to do to survive anymore.  And you never allow us to focus on anything else.  Son, we will say this again and will continue to say it...we KNOW this is not you.  It's this disease.  But no one knows what to do for you, not the doctors, not the state, not the school district...no one. And honestly, it is the most terrifying feeling we've ever felt. We wake up to the sound of our bedroom door slamming into the wall, almost daily. You, standing in our doorway naked and covered in urine...yelling. Lot's of yelling. You then stomp off into the bathroom while we drag ourselves out of bed in a daze. You didn't even fall asleep until after 2:00 a.m. last night due to the manic rocking and bouncing in your bed...and yet, you are up at 6:00 a.m.?? The smell of urine reeks strongly through the hallway coming from your room. The only relief we have is that there is no poop this particular morning. Poop is NOT easy to clean up. Especially coming from a 6'1, 245 pound teenager. Your dad and I look at eachother tiredly, and almost in unison say "Yay...no poop today." Like clockwork, dad heads into the bathroom, me to the bedroom, and I begin to strip the urine soaked bedding off your bed and get what I can to fit into the washer.  This has become our daily routine, and I can't help but think of the movie Groundhog Day, and wish that I had a day like that on repeat instead. I hear you and dad struggling in the bathroom. You are completely covered in urine and yet, you are fighting him on getting in a bath. I hear a loud smack and then dad say calmly, "Jonah, please don't hit me". You begin yelling. You then yell out loudly, "MA!!!" because you won't move off the toilet until I touch under your armpits due to your consuming OCD rituals. I rush in and give you a firm touch under both arms and you immediately get up and plop your large body into the tub...so forcefully, that water spills out all over the floor. I rush out of the bathroom while trying not to slip, and into the laundry room to grab any dirty towels out of the hamper to soak up the water. Dad is quickly trying to get your body and hair washed before you unpredictably jump back out...it's always a race against time. You don't like to wait. As I sop up the water and pile the wet towels on the floor to add to the many loads of bedding to be washed later ( I can't run the washer until we leave because it's too loud),  I run downstairs to get insulin ready so we can give you your shot before you get dressed. We know being Type 1 Diabetic is hard, you've been dealing with diabetes for 10 years now, and you are probably tired of the constant finger poking and daily insulin shots to keep your blood sugar steady. It's not fair you have to deal with severe autism, PANDAS, and this life-long illness too son, we know it's hard. I grab your insulin and head back upstairs to bring you clean clothes while dad helps you dry off. We verbally instruct you to put on your deodorant and dry your body thoroughly, which you try to make an effort, but we always end up needing to intervene and finish. Sometimes this is an issue for you to even try at all. And we have to stand at arms length to avoid being smacked, to help you. We are constantly on guard with you, always walking on eggshells. The egg shells are everywhere...all over the floors of our house, in our car, outside, everywhere we go. You stand there naked, with your butt cheek turned towards us and I quickly give you your shot.  It suddenly dawns on me that you no longer look like a child. You are covered in hair from head to toe. You have a full beard now. I find myself suddenly longing for that little brown eyed boy who loves his mama so much.  And I know that you do...it's just different now.  We verbally instruct you to get dressed, each piece of clothing needing some sort of verbal prompting or assistance. I try to quickly run a brush through your soaking wet hair while standing on my tip toes, but it catches a little snag and you immediately grab me hard on my shoulders yelling loudly and hit me. I back away and try to not let you see my eyes well up with tears. Dad intervenes and coaxes you down the stairs for breakfast, but you can't get past the halfway mark before turning around and coming right back up. You go back to where you started and try again. You are frustrated with needing to get each step just right. You begin walking again but something goes wrong and you scream so loudly it pierces our ears and then you start coming after me...grabbing at me frantically in a rage and trying to bite. You are so much bigger than me, and in that moment I forget that you are my child and feel nothing but fear of you.  I manage to get myself in the bathroom and shut the door and lock it. You pound on it, yelling. Not liking that I removed myself from your sight. You keep pounding and yelling and dad reassures you, "mama is just cleaning up the bathroom". You suddenly stop.  And it's quiet for a minute. Dad tells you again to come downstairs and have breakfast and I suddenly hear you walk downstairs with no issues. And then I begin to cry. I HATE that I am scared of you. I HATE that we have found nothing that helps you and have seen no improvement, and you continue to struggle. The days with you have only become harder. We live each day consistently trying to meet your immediate demands, and if we fail to meet them...you attack us, or destroy our home.  Dad is the only one that can manage you safely, for now.  But you are bigger then him and he is wearing down.  We know you don't want to feel this way son,  any more then we want to see you this way. You are our life and we love you with all of our hearts. But you deserve more then we can give. You deserve to be somewhere safe where you can get the help you need. Whatever it may take. What we are saying is we can't go on living like this, Jonah.  And you can't either. We are so tired. And we know you are too. We are about to lose everything...and if that happens, we will have nothing for you. No home to come back to. No mom or dad to be here for you. We have to make a living for ourselves and for you...but this disease has not allowed us to do that. And the state and the doctors here in WA have not been able to help us do that either. And you have only become more severe.  And you continue growing bigger, older, stronger, and more violent.  So, it's time for us to go BIGGER.  What do we have to lose?  We need to go big...for you, our beautiful son. Who has every right to have access to healing and access to professionals that are going to bring you to your highest potential. We know it's going to take a village. Well, maybe more then a village...perhaps a town, a state, a universe. But you deserve it sweet boy.  We see your potential.  You have so much to give and to offer the world but you have had no opportunity to do that.  And we still see YOU.  Our beautiful, funny, and loving son, who has a laugh that is contagious and a smile that will melt even the hardest of hearts.   So here we are again...humbly asking everyone for a miracle. For you.  Friends, what we desperately need is significant financial support so that we can access the best care, the best medicine, and the best supports for Jonah. We don't know what that may look like...but we are on a mission to find it.  We know it's out there...if not here, then somewhere.  Time is not on our side, for we are in serious financial trouble due to Jonah's extreme needs this past year,  and us not being able to leave our home to provide a decent income, and no support or services from DDA to help manage our son.   We also know a big part of finding treatment for him is going to take money.  When you have money, you have options.  So please...please help in any way you can. And please share our story. Along with the help of our friends and family, we pray that someone significant will see our story and either help guide us in the right direction, or get us to where we need to go. We are so afraid of losing our son to this disease and having him put somewhere that he doesn't belong.  After many many meetings with DDA, paperwork, fighting, and pushing and pleading for help, the state has already made clear to us that there is no placement they can provide for Jonah that will fit his needs.  And we are not going to agree to sending him to a mental hospital.  Sorry, not happening.  He has a medical condition that is NOT a mental health condition.  He's already been through so much pain and suffering and has lost years of his LIFE. Please help him (and us) climb out of this hole and get some life back.  We sincerely thank you all from the bottom of our hearts and the depths of our souls for your past, present, and continuous love and support. And mostly for your genuine concern for the well being of our precious son.  We are not done fighting for him.