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.

 

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31 comments on “We mourn

  1. This is devastimg and awful. It makes me ill that a mental health professional would treat you the way they did. I am sickened by a system that lets amazing people like you, P, Kelli, Issy, and so many others down. I love you, support you, and pray for you.

  2. Kim Metzer says:

    I don’t even know what to say except that you’re on my prayer list as well and I’m sending you virtual (((hugs))). Moms like you and Kelli are my heroes. I pray that you find the supportive environment that P needs – that YOU need. I always told Kelli that she’s a pioneer, paving the way for others. She’s still paving the way – we can only hope that by her resorting to this it will be a wake up call to those that have the power to DO SOMETHING.

  3. marinasleeps says:

    Thinking of you. Be strong. We are rooting for you every step of the way!

    • lisasain says:

      Thank you Marina, you are kind! We need prayer and support! This is just a tragic devastating situation. SOMETHING GOOD HAS TO COME OF IT!!!! I know my friend and I know that’s what she wants and needs!!

  4. What quack did U C?…………Please find another doctor and fast. U will continue to be in my prayers.

  5. M. Smoot says:

    That Doctor needs a different job, wondering how many patients he sees. Can you see the Doctor that you saw before, I would be so ticked off.

  6. Kelly Wilcox says:

    I hope you have the opportunity to find a different doctor. Does the practice have a different doctor you can see? After changing doctors, I would see if that guy (guy?) has a boss or superior of some sort you can complain to. Then go out on all of the internet sites that allow you to leave reviews and rip him up one side and down the other. Other people need to know what an asswipe he is.

    I am so so sorry to hear about your friend’s troubles and awful feelings of despair this stupid system has driven both her and yourself to. I know its no concrete help, but my thoughts are will you both.

  7. Heather Bolin says:

    I read the story on fox, then immediately found Kelli’s blog and read her story. She has put up with such a battle and I feel nothing but support for all she has done. I work with an autistic boy who is mildly violent and its hard. Its more than hard, and we only have him for 3-4 hours a day. I cant imagine the struggle as a parent. You ladies are by far the strongest women I’ve ever come across. Your stories speak of pain, struggles, and hope. I pray for Kelli, Issy, and her whole family and yours.

  8. Jeanette Stoltenberg says:

    Lisa, don’t you go to the McLaren office in Davison? See if you can switch to Dr. Beck. I know he takes Genesee Health Plan for existing pts, maybe he’ll take it if you’re a pt of the clinic? Sounds like he would help you out a lot more than who you’re seeing. My thoughts and prayers ware with you and your friend and her family.

  9. Mary says:

    I just wanted to let you know that I support you and feel so badly for how you were treated. Kelli and Issy’s story is heartbreaking. My son was just diagnosed ASD last month, he’s 3. Sending you much love and strength (I wish I could send that, anyway). Best to you.

  10. Lisa, I’m so glad to hear you are feeling stronger. I’ve thought about you and Preston many times over the past 3 weeks, and worried about the both of you. I recall reading a status update from Kelli, telling us she was afraid for you and Preston…asking for prayers and thoughts for the both of you….she really CARED. I find myself in shock and disbelief that this could have happened…I can’t even imagine what her family is going through right now. Or what our dear Kelli is experiencing. Never in a MILLION YEARS would I have thought this possible. My heart breaks for the Stapletons.

  11. autismmom2041 says:

    That doctor!!! Grrrr is horrible! As far as Kelli and her family it’s been on my mind so much. I didn’t realize what happened, I knew Izzy came home from G.Lakes. Then read about yesterday when it came across my autism goggle alerts. I am very sad for her and her family. The recipient right letters etc… She helped you and Preston so much from what I seen. Very strong lady! You are right! Total system failure!!! She was pushed to her breaking point.

  12. First off, that doctor needs his ass kicked. Repeatedly.

    Secondly, although I have never heard of Kelli or Issy or you before yesterday, my heart goes out to all of you and your families. I cannot imagine the road ahead for Kelli, but she’s lucky to have a friend like you to walk it with her.

  13. Rebecca says:

    I’m praying for you, your son, the stapletons, and everyone else facing these issues. I am uninsured right now and I suffer from a huge list of things. The state screwed up and now I’m uninsured. The system sucks. For your “doctor” I would be calling up every single possible person and complaining. Do not stop complaining. That’s insane. I would also suggest counseling. You may need to shop for a counselor though because I have had some terrible ones. I’m not sure if you can see my email but feel free to email me and ill add you on Facebook. If you ever need anyone to talk to, I promise that I will be there to listen. Although my son is currently only almost 16 months old and has no health concerns/behavior issues thus far… I’ve known and helped alot of people with their “issues”. I don’t want to go further on this in public about all my problems Etc but you can accept my friend request and send me a message. I’m praying and sincerely hope that our system changes and so much more xoxo

  14. Rebecca says:

    Also I know of a family friend who now owns and operates a facility for people with autism I’m not sure if they can help but I added you on Facebook. Rebecca Brewer 🙂

  15. Vivian says:

    Hang in there. I’m praying for you and Preston.

    The whole thing with Kelli is just unbelievably horrific.

  16. Rick says:

    Keep strong Lisa!!! I’m praying for you Lisa, Preston and especially, Kelli and Issy!

  17. Maris says:

    Hugs for you and good thoughts for you and the stapletons

  18. Dovi's Mom says:

    Lisa, some excellent places to look into that cater to severely autistic children are http://www.bostonhigashi.org, http://www.necc.org, http://www.thecenterfordiscovery.org, and http://www.fbh.com. GOOD LUCK SWEETIE ((HUGS))

  19. sarab1981 says:

    Lisa,
    I just wanted to say I’m praying for you and your friend. What you both have gone through with your children is devastating. I’m really sorry our system has failed those who need the help the most.

    As for Kelli. The way it’s being reported is driving me mad. They keep saying things like “tried to kill” and “attempted murder” which may be what it is, technically, on paper. But to me, it seems she was acting from a kinder place. She was trying to free Issy (and herself) from the monster that is autism. Anyone who has ever seen their child in pain that tylenol won’t touch knows the desperation of a mother’s desire to stop it. She’d done everything she possibly could. She’d begged and pleaded and pursued treatment, and came up empty handed. Those who judge her harshly should have to live a week with an aggressive robot (robot not because the children are like robots but because most people couldn’t endure what she did day in and day out without hurting the child and children like Issy certainly don’t need more ridicule) and then see how they feel.

    She isn’t responsible for this. She had no where else to go. My heart breaks for her.

  20. autismmom says:

    Wow that doctor is a piece of work.My doctor gives me meds when needed because he knows how hard it is for me dealing with my daughter who is autistic. He also has a daughter with autism so I think he understands so he never gives me problems. He gave me xanax but they tend to make me too groggy so I only take them when I’m really feeling unhinged. I live in NYC and reading your blog I sometimes felt how you felt. The worry of what the future holds to the loneliness of feeling isolated from the entire world because nobody really understand how it feels to raise a child with autism. I consider myself strong but sometimes I am weak. I cry sometimes when I my child doesn’t get birthday party invitations then I stop crying and say to myself …wait my daughter doesn’t like birthday parties lol who am I crying for me or her lol. Just know you are not alone. My daughter will be nine. She still eats baby food, doesn’t really speak,she is not potty trained and has no fear of danger whatsoever. My new fear is her getting her period…ugh I dread it so much. I’ve been fortunate enough to have someone come to my house seven days a week to help me out and now I’m waiting on a respite program for her.

  21. Carla says:

    Lisa, I found your blog through Kelli’s and hers through a news article. Sometimes we are quick to judge others actions without knowing the struggles of that person. I’m sad that the system fails the people that most need it. Stay strong! I will keep you and the Stapletons in my prayers.

  22. Hi, I found your & Kelli’s blog after hearing about her terrible experience in the news. My son is also on the spectrum & aggressive so I’m a kindred spirit. But I just wanted to comment and let you know that I care about your struggle and wish all of you well. toddlermomonthebrinkofinsanity.blogspot.com

  23. Linda Peterson says:

    Lisa, I am in shock on how that “doctor” treated you. It sounds to me like you are in better shape than he is. You and Kelli are two of the most thoughtful people I have ever heard of. Even though you and Kelli were dealing with super tough situations, you still take time to suggest to other people to think and pray for each other. The sense of humor I read in both of your blogs is pretty amazing. You are a super, super person to love and help your son as you have. I will continue to pray that his treatment is very successful and you are able to place him in a great place. Thinking about you every day and hoping each day will get easier for you. I think the world of both you and Kelli.

  24. Marty Stultz says:

    Lisa, I read all of your postings and all of Kelli’s postings after reading about Issy and her Kelli in People magazine. My heart goes out to all of you. Please know that you cannot raise Preston alone. You are doing the right thing by seeking residential treatment, even if you are forced by the system to give up your parental/custody rights.

    My brother is severely retarded. I was born in 1963 and he in 1965. At that time, of course, it was considered to be shameful to have a mentally disabled person in your family. My parents looked into various “placements,” but could not bring themselves to put my brother “in a home.” So we all lived together in a small house along with my mother’s mother, who was “senile,” spoke little English, and was meaner than the wicked witch of the east.

    While my brother was not autistic, and his behaviors were not as aggressive as Preston’s and Issy’s, our home and lives were tailored around his needs. Because he had severe grand mal seizures, all hard surfaces like windowsills were “padded” in case he was nearby when a seizure hit. Doorways to all rooms were accessed by gates to either keep him in or out. Anything that you did not want to see destroyed had to be put in cabinets or in some way secured so he could not get them. He, like Preston, would take off his clothes and run naked through the house. There was no rhyme or reason as to what might happen on any given day. Furniture upended, toys and any other unsecure objects strewn everywhere, seizures, recovery from seizures, meds, screaming, tantrums, could happen at any time. During his teen years, puberty kicked in and there was now the natural biological issues that affect boys to deal with.

    The constant stress took a toll on all of us. My mother died of bile duct cancer when I was 13 and my brother was 11. That left my dad, who had to work to support us, my crazy grandmother and me to care for my brother. It was just what had to be done. I knew that I needed to escape as soon as I could get out of the house or my life would never be my own. When I turned 18, I graduated, got married and left the state. That left my dad and crazy grandmother in the house with my brother.

    Finally, other relatives took my grandmother to live with them. Kind neighbors and respite services helped my dad manage. But my father, with a weakened heart from the rheumatic fever he had as a child, died when I was 21. Guess what? I was called home and everyone wanted to know what I was doing to do. So I made the hard decision that my parents never could – seek residential placement for my brother. I found an excellent state facility and within weeks of my father’s passing, my brother was moved to a safe, secure environment. I am his legal guardian, but do not wish to have any control over his finances. He receives state disability and SSI. He does not know me.

    My brother remained at the state facility for over 20 years. When the state facility closed several years ago, I was once again forced to make placement decisions for him. He has been in a series of group homes. For the past year, he has been medically stable and seems to have settled in. We will see how long this one lasts. With every new move, every new staff person, and every hospitalization, I reiterate that he has a DNR order on file. He has lived and suffered long enough.

    The point I am making is that parents of children with severe special needs must do the right thing and reach out for help. What happened in our family has definitely made me a more compassionate and independent person. I have the strength to make the tough decisions because I have been forced to do so for so long. Please, for the sake of other family members, make the decisions that need to be made for your children. Do not leave it to others to have to decide for you, after the fact.

    Lisa, Preston, Kelli, Issy, and your families are in my thoughts. I hope everything turns out OK for all of you.

    Marty Stultz

  25. Tamara says:

    Kelli’s fb support page seems to have been taken down and I was notified today that comments have been disabled for her blog, which is where I read about you and Preston. I looked for her blog after reading about her murder-suicide attempt to try to understand why she did it, and now I do. You’re so strong for not having done likewise with him! My heart is breaking for you, and those you love. I’m so sorry you lost the advocacy of such an amazing friend in such a horrible way, and I admire your refusal to neither denigrate her nor tolerate anyone else doing so. I’m amazed that you even had the courage to say, “There but for the grace of God go I”. I wish you and your son the very best futures possible.

  26. B Cates says:

    Lisa, I have followed your blog and Kelli’s for quite a while and asked to be a part of the support group for Kelli. Over the weekend, I was dropped from the group. I had not posted any negative comments (or any comments). I am very disappointed that I cannot be part of the group and get updates on how Kelli is doing and contribute to the various funds, etc. I’ve requested to be reinstated, but no action has been taken. Please allow me to be a part of the group.

    • lisasain says:

      The group was removed per the family’s request. Every person was deleted. I’m very sorry.

      • Cheryl Archer says:

        Lisa, you are in my prayers. I know exactly what you mean about the railroad crossing. I promise you here and now that I will never go there with my son either.
        Cheryl Archer in Texas

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