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

We mourn

Yesterday I was at my psychiatrist appointment to get more medication. I’ve been without my meds for a little while and I can feel the difference. The psychiatrist has seen me once before but doesn’t remember me. I explained my circumstance and this slightly jarred his memory. As he started asking me questions I began to cry, then sob, and before you know it I was a blubbery mess of tears. Here is how the conversation went and I will leave out the parts that I don’t think are suitable for this blog. 

Dr: Why are you crying so hard?

Me: I feel completely lost, angry sad hurt and alone, and most of all I miss my child

Dr: well this is something you must accept and cope with better, you cannot be dependent on drugs

Me: I am not dependent on drugs.

Dr: then why would you wait so long to refill?

Me: Because i thought I could do it without them but I know I can’t I feel my depression and anxiety getting worse

Dr: You do not take drugs of any kind?

Me: no.

Dr: whats in your purse?

Me: excuse me? Nothing… cigarettes, tissue, autism pamphlets, a special needs trust fund brochure, etc.

Dr: okay. Well do you not have any support? What about your boyfriend? 

Me: I dont have a bf.

Dr: The paperwork says you do. It says RIGHT HERE that you live with your boyfriend.

Me: I do not live with anyone except my son

Dr: so your son is with you or in a facility?

Me (crying out of control and hard to breathe) NO, I lived with my son alone until he went into treatment now I live alone.

Dr: I dotn understand why it would say that if you live alone. I will not judge you, its okay to live with someone. 

Me: I LIVE ALONE and what does it matter. Why do I feel interrogated? No disrespect but you are making me cry because I don’t feel sympathy or understanding from you, and thats fine but for God’s sake please dont scrutinize me. I just need the stupid medication. 

Dr: I honestly do not feel safe writing a script for you and quite frankly I feel like calling an ambulance for you now. You are in crisis mode and you need a shot of something for your nerves and you are having an anxiety attack. I know I am not the psychiatrist who saw you before and I believe that you have memory problems, PTSD, anger issues, and if you do not talk to me I cannot help you. You need to be admitted into the psych unit for a couple fo days for evaluation. 

Me: How can I get help when you are badgering me and you are the one that doesn’t remember me? 

Dr: you are the one with mental health issues, not me. You must calm down or I’m sending you to the psych unit. 

Me: (realising he is serious) take a deep breath and get on my phone and play a family feud game…I must quit crying or Im going to be admitted and I still wont get my meds but Ill be doped up laying in a hospital bed. I take along hard deep breath and I apologise for my “anger and noncompliance”. I ask him about his work and how long he has been there yadda yadda, five minutes later I get my stupid script for a prozac type medication. All that for an antidepressant. Nothing more. He refuses to give it to me. 

I leave the office with my puffy eyes. I’m so angry and frustrated. This psychiatrist is a state worker. I do not have insurance other than the genesee health plan which is minimal coverage yet better than none. I have no other choice to go to him. My family pcp will not give me tylenol if my leg fell off. Shes horrible and constantly tells me I need therapy. I know friends who get xanax because their kid didnt make the football team and they are upset. I’m not happy. Then I got one of the worst phone calls I think I’ve ever received. 

 Its my friend who tells me about the Stapletons. My hero, my sister, my warrior, my confidante, my mutual contender, my mentor, and so many other things. 

Oh My God, PLEASE help me find the words. There are no words. I just have to type this. 

The system failed Kelli and her family, she got to a breaking point. She attempted to kill Issy and herself. 

I have been close to this scenario myself. As a matter of fact yesterday when this stupid doctor wanted to admit me into the psych ward I thought my gosh I could just go postal, why is it so hard to get help.

I have no words for the pain and shock I am feeling for her, for her husband, for her children, all three of them. I may be sounding a little conceded here but I thought I was the strongest person I knew, until i met Kelli. She has fought for so long. SO LONG DAY AFTER DAY HOUR AFTER HOUR YEAR AFTER YEAR to get help for her daughter. 

One person can only do so much, along the way she held my hand and showed me the ropes. I can never repay her for her braveness and courage to stand up for Preston and I as we sought out treatment, I didn’t understand how God could give me such a wonderful friend to support me. Our lives mirrored one another and through her I have met so many other wonderful parents and we have become this brigade and Kelli is our leader. She is our Commander, our chief. 

She has fallen. I will NEVER give up on you Kelli. My heart aches. I am so sorry my dear friend. I only wish I knew what to do. I feel like you would have already rallied the troops and be standing by my side. I feel as if I failed you. Im scared, and I feel alone. I wish i could have been there for you more. I pray for you nonstop. 

Last night as I drove home by the railroad tracks that I so many times have thought about running my car into with myself and Preston, I cried for you. I have been there more times than I care to admit. However, for the first time I looked at them very differently and I was afraid of them. I got chills and I broke down. I pulled off to the side of the road and I made a promise to God. I swore that i would do my best to carry on, no matter how hard. 

My friends, my family, my supporters, I make a vow to you this day. I promise to do my best to not go into those train tracks. Life is not easy now or has it ever been. I am bracing myself for the fight to place Preston into a permanent facility. I cannot care for him any longer. Its so hard to admit. But I cant. I’m not sure if I will ever be the smae person I used to be. This life has really changed me. But I’m okay. 

I wasn’t before he went into treatment. I was one more punch in the face from riding into those tracks. But Im okay now. for now. 

Please pray for Kelli and her family during this devastating tragedy. If you do not support her and express sympathy and compassion, please do not post on my page. Remove yourself from my friends list. She is and always will be a hero in my eyes. Please pray fpor her and her family. 

Here is a support page on facebook:

https://www.facebook.com/groups/596268760417104/596284140415566/?notif_t=like

Thank you.