Deep Breaths………Big Prayers…..

I am so lucky to have the support of so many people and I want to start off by saying thank you. Thanks for listening, reading, caring, sharing, for sympathizing with our situation, and for those who do/can empathize. I am sorry I have not blogged in a while. It’s been a debate that swirls in my head almost daily. It’s a great outlet and I feel that I’ve “sucked many of you” into our lives for lack of better words. So bare with me. My thoughts are scattered. Stress tends to kick my A.D.D. into high gear. Despite the advice of several professionals I am going to ignore them and I am blogging.

First I need to talk about my friend Kelli Stapleton I support her. Period. I will not speak about anything I know or don’t know. I read the articles now and then and I don’t know anymore than anyone else. I understand that the news is not always the best way to get the facts, but it’s all we have. In my opinion, I know in my heart where my dear friend was, I know because i’ve been there. More than once.  I will leave it at that. If you would like to help her and her family there are two sites that you may make contributions to. One is through their church to continue to help with their autistic daughter’s treatment. That site is:

                                                       http://elberta-alert.org/please-help-issy-stapleton/

There is also a way to help Kelli and raise money for her legal defense fees. That site is:

                                                  http://www.youcaring.com/other/friends-of-kelli-stapleton/90021

Both sites are legit and all funds donated will go towards the causes that they are meant for. If you can spare an extra dollar or million, any and all is deeply appreciated. Thank you. 🙂

So On to my beautiful son Preston. How is he? Where are we at? Whats going on? To be quite blunt….it’s been stressful. Preston has been through the ringer. Hospital visits, Er visits, Doctor visits, getting physically harmed, etc. Emotionally, it’s hard to tell where he is at. He doesn’t talk. It’s like a newborn. You just go by what you see. The nonverbal cues and physical attributes of his body and face. It’s what I go by. The staff lets me know when something “bad” happens. However, I don’t get daily calls from them. We tried facetiming but it only brought stress for both P and I, so we stopped. Emotionally Im a complete wreck. I knew this would be hard, but not this hard. It’s beyond words gut wrenching and I live life almost daily in constant turmoil. Worried, anxious, sad, and angry. I can only pray i eventually have peace someday. Maybe my mom was right after all these years, that it is harder on me than him. I hope she’s right, but mom’s are always right, correct? 😉 I’m going to place a bet on my mom…:)

So the good news.. ready? PRESTON IS THRIVING! Huh? What willard? Yep.. thriving, doing well, dramatic decreases in behaviors. So does that mean I wasn’t strict enough? Didn’t follow behavior plans correctly? I didn’t get “professional advise” “professional” help? NO, NO it does not. I was strict. I spanked Preston, I used timeouts, I used ABA, I tried COUNTLESS methods suggested by professionals. These professionals do not live with autism 24/7. I can handle 5 autistic kids for 4-8 hours a day too. I can be consistent, and stick to plans. Preston doesn’t trust a stranger. If they tell him to do something he may push their buttons to see if they “cave”. Eventually he realizes that they wont. He behaves and doesn’t ALWAYS use aggression to get what he wants, especially when the rules are black and white. With me its a whole different planet. He trusts me. He will hit me, bite me, destroy our home, and literally put me in …ugh tough to admit, but in life threatening situations. He knows I’ll give in out of exhaustion, emotional ties, and at the end of the day no matter what he does to me, I’m going to kiss him love him and never bite him back. That’s called abuse. I won’t lie about my next shameful statements. I have hit P, I have bit him back when he was younger, I have yelled at him and threatened him out of pure frustration and exhaustion. Caregivers have done the same. Why is he behaving at the treatment facility?

Because of several components. He doesn’t “trust” them the way he trusts me. They are consistent. They have a safe environment. Non breakable furniture, walls, tv stations etc. No windows that are accessible. They are in lockdown. He has minimal space that he is allowed. He cannot get a drink of water freely. EVERYTHING is locked. I do not have the luxury to transform my home into an autism friendly environment and make the modifications. What i do know is that he is thriving in this type of environment.  That’s the great news.

Which brings me to our next step. Making the choice to come home or TRY to get permanent placement in a residential facility. I am going to admit something that is really hard to admit.

I cannot do it anymore. period. 

I have dedicated my life to making sure health forms are filed, he is up to date on anything and everything, making sure he gets proper education, staffing, plans, therapy etc. I’m done. It wore me down. It didn’t work. I was suicidal, depressed, and suffer from PTSD. I’m broke, in every way you can imagine. I’m damaged. If I’m not okay, he won’t be okay. I’m his Mom and his Dad. We are tired. I’m going to try and put Preston in a residential facility. Let me explain something to you before I get into that. Even if Preston came home, we DO NOT HAVE staff in our area that can help with Preston. We tried. Yes, his behaviors are better, but i have to train individuals who would get paid crap for money. It’s a tough job and $8 an hour doesnt cut it. So even IF I WERE emotionally and physically up for the challenge, I am alone. I would have to fight for the maximum services we would need to get by and that’s an understatement. Why not move to a place where services are better? Well, good question… but I’m not guaranteed anything and at the end of the day, don’t I deserve to finish my degree, work, and try and rebuild my life? I’ve been alone for 12 years. I kind of miss having a man hold me, support me in choices through good and bad. I want to work and follow my dreams. I’m not getting any younger, but there is still time, I hope. However, let’s dance with the idea of me moving “somewhere” (in this perfect land of autism filled professionals that know what they are doing and help) and he gets better services than where we live. What happens of I die in a car accident? Not very likely right? Well it happens. It’s a very real reality to me. I actually think i’ll die of a heart attack. Anyways….if i die what happens to Preston then? I just had my tubes tied, there will be no other siblings to care for him, no nieces no nephews… no aunts or uncles that can or SHOULD have that burden. Then what happens? Aren’t I smart to secure his future the best way that I can now? Establish a secure and stable environment for him now? The answer is yes. In my heart and my gut and as Oprah says.. “aha moment”, yes.

So I am in the process of looking at the TWO homes in our state that will take Preston. Problem:

State of Michigan will only “accept” his medicaid if he is a client of Department of Human Services or DHS. How does that happen? He is a foster child. My choices to get medicaid to pay are simple:

1- I refuse to pick him up from where he is now and abandon him which is a federal offense.

2- I give up parental rights. Which means I have no say in his care, or where he is placed, or make sure he is ok and even worse than that on a personal level, I never get to see him again.

How do you like those apples? Hold on, I can do private pay and the cheapest of the TWO facilities that I can POSSIBLY choose from  will only cost me $126,608 per year. UUUMMMM Unless I become President, I’m not sure I can actually afford that. (Lisa inSain for president please) 😉

I expect to pay for my child’s care, its like sending your typical child to college. One difference, you have time to do this, there are scholarships, etc. I didn’t ask for this. I know others aren’t responsible for my child either, but it’s not fair, and that’s a fair statement.

So for now, i’m remodeling my home so I can sell it and buy a cheaper home.  I will live in a campground thanks to a good friend until I get the house done. I’m not sure what the future holds, I’m back to the books. researching laws, calling on God, the president, the financially fat owners of these homes…..begging pleading for them to help save us. He can’t come home to me.  I think we all know why. Don’t make me say it.

Keep us in your prayers. I love you all. Something has to change, I’m working on it.

Lisa and Preston

Clueless at the inSain Asylum

                                                                                                                  1413

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10 comments on “Deep Breaths………Big Prayers…..

  1. Candy says:

    Lisa – Please google Toni Hoy, she’s a mental health advocate who successfully sued her state to get it to pay for the treatment her son needed. She’s also written a book called “Second Time Foster Child” about her experience.

    She was forced to relinquish her Parebral rights… but GOT THEM BACK!

    • lisasain says:

      Hi Candy, I appreciate the “resource” but her situation is different. She is a foster/adoptive parent. The rules are different, and she lives in another state. But thank you!!! 🙂

  2. lynnblair47 says:

    Lisa, this is very well written. I have followed you since hearing of Kelli’s case and digging in to it. I read her entire site. I feel for all you parents in this situation. Keep blogging. Hopefully y’all will get the attention you deserve. Your plans sound great. Keep moving forward. Praying for you (and Kelli).

  3. Alice says:

    I found your blog after reading about the tragedy of Kelli Stapleton. I just want you to know that your story is deeply moving, and your honesty will help others like me understand what it is to have a child with autism. You are brave in a way that most of us cannot imagine being, and my heart goes out to you as you work through this decision about Preston’s care. Sending you a giant wish for peace–for Preston, for you.

  4. Angela says:

    I am hoping there are some provisions in the Affordable Care Act that will help with this type of stuff myself. Crossing my fingers. Hang in there.

  5. Rebecca says:

    As a mother, my heart breaks for you. But you are strong and the woman God blessed Preston to have for a mother. I can’t imagine having to make such horrific decisions. So I am praying for you dear woman. During this time, pray to receive God’s peace and soak in His love for you. As much as you love Preston, God loves you both even more. Imagine Him holding you. Continue to ask Him for wisdom and provision. He has a plan for you and for Preston and it’s not to difficult for Him. From a stranger praying for you, who admires your strength and loves you with the love from the Lord.

  6. Dovi's Mom says:

    I’m thoroughly confused. Is there REALLY no way in michigan to place a special needs child in a residential fcility without giving up parental rights???
    This CAN’T BE RIGHT!!
    Did you talk to the 2 facilties? is that what they said?
    If it’s true, it’s awful. Parents of sn kids should be able to place them while remaining their parents. This ‘rule’ is outdated and cruel.
    Please please try to find out if there’s any other way. Or look into out of state placement. I gave you links to four residential schools, you do not hve to relinquish any rights!!!
    Try to get a special needs advocate or SOMETHING – this can’t be this way 😦 it shouldn’t 😦
    ((HUGS))

    • lisasain says:

      I took a break for a moment…. I needed it. From what I know, this IS the case for a minor.
      My break is over and starting tomorrow it’s back to my “war”, back to the books, back to studying the Medicaid manual for the state of michigan. Back to endless phone calls and endless responses that typically end with responses like, “hmmm I don’t know have you contacted autism speaks?, contact your local Cmh, I would call disability network, contact department of human services, etc”.
      I’m not confidant in my plan. Right now it feels like a lose lose situation, in all honesty, even if I do accomplish my goal for my child’s best interest, I’m not sure how I’ll find peace. But I know I have to one way or the other.
      I appreciate the support, feedback, resources, and prayers.
      My combat gear is waiting….. Again.

  7. Sheryl B says:

    As a mother with a 21 year old autism spectrum son, it breaks my heart to see that nothing has really changed since my child entered kindergarten in 1997.

    A person who see their child struggling, who has to let go of the dream that their child will fit into the world, to have the endless, horrific fear and worry about what is going to happen to your child when you are no longer around to protect them – it destroys something in your soul.

    I am so very sorry for your struggles.

  8. Sheryl B says:

    Oops – a person who “sees”..

    My thoughts seem to be scattered too…

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