Settle Down, It’ll all be clear….okay Phillip Phillips…:) I will….

So official meeting #2 was yesterday… PHEW….3 hours long! I met two new “high ups” and they seemed to hear me loud and clear. They hear me, but they just keep saying, “we don’t cover residential services”. GRRRRR!!! I cried,I pleaded… I begged. It was sad. It was hard. My two advocates did not show in person nor were they able to be there via teleconference. Talk about annoying. So it was 6 state workers and myself. Lovely. The meeting came with many moments of silence. They know I’m right, its completely a financial thing. I’m going to continue with my crusade. ūüôā This song comes to mind and I dedicate it to the Stapleton family! Especially Kelly Stapleton (The Status Woe, here on word press) ..and all others in the “Hard to Love Club”…

Won’t Back Down… for the Hard to Love Club ūüôā

SO that was that. I leave the meeting and¬†I’m¬†so thirsty, I’m¬†emotionally¬†drained. Thank goodness i still have my water bottle from the meeting. I take a swig… mmmm….I could use a “stress nap” as I call it. When you get this stressed a good 10-20 minute nap helps to just “refresh your brain”. But, no. No time for that. I must go get P, because from what I’m told Thursday (today) is the day he is getting admitted into U of M. From what I hear from other parents that have been through similiar scenarios, ¬†its a month long stay. SO my intent is to have fun with Preston. Do whatever he wants and try my best to let him have fun and enjoy himself, spoil him, if you will. So he wants to go the indoor bounce house.¬†OK¬† Lets go,¬†I’m¬†sure it wont be busy. I call & there are only two small girls there. PERFECT! He does well pretty much the whole time. At one point the small girls do come into the bounce house he is in.¬†Immediately, I step inside the bounce house. I know he can be a danger to himself and others. He does really good. UNTIL they leave.. he doesn’t want them to .. but he can’t talk. He pulls her ponytail before I could stop him as she’s sliding out. I felt so bad. She didn’t cry¬†and¬†her¬†mom was right there. The mom was not happy but understanding. I¬†apologized¬†profusely. From this point on he keeps looking at the girls, pointing, grunting. I¬†know¬†he wants to play with them.. but he can’t. He’s overbearing, scary, and doesn’t know appropriate play. I¬†know¬†I know .. THEN TEACH HIM!!! Guess what… I HAVE TRIED!!!! I¬†NEED¬†HELP.. in order to teach him these things he needs ABA therapy 24/7. Intensive treatment.¬†That is¬†what the Autism center can provide.

SO anyways he is a little frustrated and I¬†know¬†that this can escalate so i try to get him to leave. ¬†I can tell he wants to but doesn’t. I can tell he’s going to flip on me and I’m on eggshells, my heart is racing, I’m praying to God, “please don’t let him meltdown or rage here… PLEASE GOD PLEASE!”!! I almost get him out the door when he notices a photo album. My heart dropped. I took a deep breath. I knew all hell was about to break loose. You see Preston is obsessed with photo albums, ANY kind. He enjoys looking at pictures. Especially those that have fun things in them.¬†This¬†one had party pictures that the place has done. It was a showcase per se, ¬†of their work on display. Preston wanted it and he wanted it bad. Already on the border of a fit, i knew this was going to be awful, I could feel it. Mind you.. I just finished a 3 hour stressful meeting. I didn’t sleep the whole night before. I’m not exactly sure he last time I slept the whole night this week. I take a deep breath and I say, “Preston we can’t take that with us, its not ours”. He grunts he grips the photo album and attempts to get into the car. I’m able to coax him back and I say, “do you want a sucker”? He says yes. I make him give the woman the photo albums and he gets the sucker. That’s when it takes the ugly turn.. he literally flips out screams, falls to the floor. They kind of giggle not knowing how horrible this can get. I tell them. They say ok no worries. Im thinking ummm you’re not listening. P decides to start kicking me and I can tell this is escalating and he is going to rage. He stands up adn I look at the girls and I said watch out. I feel they are pretty safe behind a large counter. I tell them to stay there and not come out. He begins to throw candy. then he knocks over a table then it happened.. he starts hitting me. I back up and he thrusts forward. He got me in the face and has a hold of my hair. I manage to break free and step far away as he starts destroying the property. I dial 911, the operator can barely hear me through his fits of rage. The screams were so loud. As I’m on the phone he broke a ping pong table in half, took a framed picture off the wall and attempts to throw the glass part at me. He manages to break one piece of glass but doesn’t harm anyone. As I’m dodging glass, and candy… I’m trying to remember where the hell I am. They need the address. The girls scramble to get it for me. I tell them to clear the counter because he is going to use anything he can to throw at us. The operator asks if we need an ambulance, Yes. We do. In the¬†back¬†of my head I’m thinking here ¬†we go. I was told that if we ¬†were int his situation that I need to tell the ambulance driver that he is registered to be admitted to U of M. So i’m thinking we are going there. I hang up with her. I’m dealing with a monster.¬†This¬†is¬†not my boy.¬†This¬†is autism. Fricking stupid, insane, ludicrous, unfair and nasty autism is staring me right in the face and challenging me. Nope. You will not win, I attempt again to stop Preston from his rage and destruction.. bad move. He slaps me dead smack on my face. It stings. I hear the¬†girls¬†working sigh in astonishment. Preston literally picks up the popcorn machine and throws it behind the counter. My tears flow snot is dripping uncontrollably from my nose. I wipe it on my clothes. Where is the damn ambulance? Where are the cops. “Fine… I give in autism you nasty bastard”!!! I’m defeated. I’m scared. Finally the cop comes in. He is calm as can be. He says this guy? I say yes. He gets close to him and I say DONT! Hes aggressive he will hit you! Too late. Hes asking me questions and i’m like… control him …P’s destruction starts the officer tries to stop him. P gets aggressive with him¬†and¬†the officer has no choice but to put him to the ground. His knee in P’s chest and gripping his arms with all he has. P is flailing about. The officer has him in lockdown. Once things calmed and P stops moving. He asks me is he ALWAYS liek this.. I just nod. The tears wont stop. Can you imagine seeing your child pinned down by a police officer? My baby. He’s 12. But really according to his educational records he is only about 4 years old. Damn it. This sucks. I tell the officer if he releases him, now that he’s calm he will just lay there that he is afraid. P wasn’t just afraid he was scared to death. I think he had a seizure. He’s looking at me with these eyes. The help me please mama eyes. The officer states he cant because he is afraid he will hit him. I just not in compliance. I can’t argue. He’s doing his job. The ambulance gets there. The officer is like, get a gurney, restraints, and blah blah blah.. this kid is a danger, hes aggressive, strong, and blah blah¬†blah.. i just kind of blank out. A familiar face walks in as i am in trauma block out mode. Its a fellow “autism warrior” …He is a police officer in the area that knows me. He hugs me and I break down. He simply says,” you”re doing the right thing.” Its exactly what I needed. A hug. I haven’t been hugged in so long except for my mom the other day. ¬†I just needed that…. those 5 words, I needed at that exact moment. I take a deep breath, wipe my tears and got my crap together. The paramedics have him¬†restrained. I tell them he needs transport to U of M, the driver says rudely and quickly, ” I’m not transporting to U of M.” I ask why and he says I’m¬†not¬†going¬†to fight him the whole way. I state, ¬†“one he is calm now and two he is restrained”. ¬†” i’m not doing it lady” he says. Whatever.. I’m too tired and I’m too angry and frustrated. The police are there.. I feel defeated. He is on his way to Hurley. I stay talk to the police for a moment and leave.

So now we are at the hospital. Im not even going into that or that i had to tell a couple of people off. idiots. You ARE NOT TRAINED IN AUTISM! LISTEN TO ME! YOU ARE NOT TRAINED IN AUTISM!!! YOU do your job, Ill do mine! But we need to communicate effectively.. in order to help the situation. UGH! UGH!!!! talk about frustrating. P is agitated at one point and Im lke the sucker! I have the sucker from the bounce house! YAY YAY!!! Success… he is happy and we found cartoons on Nick Jr…Phew.. deep breath…

photo (13)

We get home around 6 or 7 I can’t remember. But What i do remember is finding out that his stay in Ann Arbor is only approved for 2 days. GULP! WHAT?!?! I have heard from other parents its a month stay. No. Approval for 2 days then they go from there… I’ll be “lucky” to get 6 days total. On one hand I’m happy…¬†that is¬†SO easy! I can handle 2-3 days… CAKE! But wait.. isn’t he there to be observed, to be monitored? So that he can get evaluated and we can help him? Umm great. perfect Flipping perfect. So ……He is supposed to be admitted today. Who knows what will happen but while he is in the hospital now, I get to fight for treatment too. I can’t wait. Relax? Get rest? recoup? Nope. Not this mama. I’m in a war… you don’t rest in war. You sleep with your eyes open and get ready for your next move. Carry on.

This song is dedicated to my son:–KE

I Love you Preston Lee.. today now and always.. I will NEVER give up on you… ever, even if it kills me.

6 comments on “Settle Down, It’ll all be clear….okay Phillip Phillips…:) I will….

  1. jeff valley says:

    I am friends with Amanda Hoffman and saw this on Facebook….. I am the owner of the Bounce Warehouse and showed up minutes after you left and spoke to the police officer (your friend)… I am glad I saw this because I wanted you to know that everything on our end is fine and you have nothing to worry about!!! The ping pong table was the only thing that was in issue which was only a bracket holding it together and I was able to fix it right away – everything else is in working order and in the end mean nothing as long as your boy is o.k. – I wish you nothing but luck with him and the future.
    Jeff Valley

    • lisasain says:

      Hi Jeff,
      I was going to call you today. It was on my “to do” list. I AM SERIOUSLY sorry!!!!! I felt so bad. That was his 3rd time there and he enjoyed himself. He seriously just snapped. The girls working were so kind and always are!! I appreciate you saying not to worry about it! I’m so glad there was no major damage… Especially the ping ping table. What about the popcorn machine? Please let me know. Thank you for understanding. I hope the girls working weren’t too upset. Once again, I sincerely apologize and thank you!
      Lisa Sain

  2. Misti says:

    My heart aches for you, friend. I found your site through a link on The Status Woe. As hard as it may sound, I think you should post a video and start a similar fundraising campaign. Let people help you help your son, and then pay it forward helping others. I’m praying for you, and him, and all of us with children suffering from a condition none of us truly understand. I just want to leave you with a word of encouragement shared with me by a friend, mother of 4, all of whom have now been diagnosed with Autism- she told me that when she gets down, she reminds herself that God thought her children were a good idea, and chose her to mother them. I have to remind myself that daily(hourly!)-God thinks MY child is a good idea. He doesn’t make mistakes. I can’t fathom autism being good in any way, but God’s thoughts are higher than mine, and His arms are there to pick me up when I fall. Praying the peace that passes understanding over you.

  3. Maura Berg says:

    Dearest Lisa,
    I just wanted to take a moment to reach out to you. I realize you have no idea who I am but I still needed to let you know I hear you and my heart goes out to you! I am Director of Special Needs programming at Brighstar. I work with special needs kids seven days a week. I know Issy Stapleton and used to work with her before my path changed and I began working for a different company. So I found your latest blog from a link on her page.
    There is just so much I want to say. So much I wish I could do to change things for you and P. so much that just cannot be put in to words. I work with kids/ adults who have a wide variety of disabilities from Spina Bifida to Autism. When I started working for BrightStar in July I was blessed that they gave me the opportunity to create a program that allows my staff and I to work with these Special Needs Miracles and it has transformed my life. I have never felt more alive and full of love since I began this journey into the trenches with these kids and their families. It is a tremendous blessing!
    I want you to know what a remarkable mom you are! I cannot imagine the strength it takes to get up everyday and forge through what you do. When I read your blog my heart broke for you. Not out of pity but out of this grand respect for the road you are walking and the amazing tenacity you are doing it with. I am sure there are so many moments when you feel like the water is well over your head. But you my dear are a gift to this world! You are a shining example of all that we should strive to be. Even reading through the meltdown story the love,compassion, strength, and hope bleeds through every word you say. You are a loving mother fighting for her son who needs to be heard. The depth of your heart for your son simply goes beyond words. He is a very lucky boy to have such a wonderful warrior fighting on his behalf. I know that at the moment Autism seems to be charting the course of your life but I want to encourage you to hold steady! There is hope and change is possible and my prayer is that you find and are given what you and P need. I have no doubt he is a phenomal young man. These miracles always are and though their struggles might color how some people view them the truth is what they fight through everyday is a strength we should all hope to have. I have yet to meet a Special Needs Miracle that hasn’t completely transformed my life. They teach me so much everyday and constantly challange me to become better and to love deeper!
    I wish I could write all this better so you could understand my heart towards you! Just know this…..
    ~ you are a remarkable woman and I applaud all you are striving to do!
    ~ P is a gift meant to make this world a better place and we absolutely need him! We just need to find out how to unwrap him so that all the beauty that lies within can shine and color the world the way his life was intended to.
    ~ sometimes the answers and help we need seem buried under cement and beyond our reach but don’t give up….please keep going…one good moment… meltdown…one miracle at a time!
    ~hold steady and stay the course! People you don’t even know are cheering you on!
    ~and thank you! Thank you for loving him the way you do! Thank you for fighting for him! Thank you for being transparent and sharing your story with the world! We need to hear it!
    Cheering you on

  4. Holly says:

    I don’t personally know you and have been reading your blog through Michigan Happenings. I have a son who is 9 and autistic he was the most lovable kid. As he gets older and his anxiety goes up the worse he has gotten.You truly are a blessing not only for P, but us moms who feel alone and have no one to help us or who take the time to try and understand what it is we go through on a daily basis. Thank you for opening up your life and letting people know how autism really is. I truley hope you get the help that P needs. I cannot believe that the state of Michigan is failing the both of you, but yet there people who are cheating the states system and getting away with it. My heart aches for you, you are a remarkable women and mom. And the strength that you have within in you is just unbelieveable. Thank you for everything that you do for your son. I will being parying for you every day. And sharing your story with everyone I hope you can get all the help you need for P.

  5. Melissa934 says:

    Hi Love…
    There’s something people don’t see whither children and it causes much distress. When a child is born Autistic they are very wise. They come to teach you patience and unconditional LOVE. As well as hand your child a computer of some sort…allow his COMMUNICATIONS to be heard this way. Its always that their communication skills arnt properly tuned. remember for every frustration you endure in life….find the lesson as a positive jump forward. Lots of love…..Melissa 333444

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