The hardest blog I’ve ever posted

June 26th 2000. He was here. Baby boy sain. We fought over his name for weeks. So long that he left the hospital without a name and once we decided on it we had to go to court in order to legally make that his name. But it was perfect. Preston Lee Sain. Chad picked Preston. I had a few names I wanted; Easton, Jaxon, and Paxton were my favorites. He insited on Cooper, Coleton, or Spencer. ICK.. none seemed to fit in either of our minds. He was born in East China Michigan, off the Detroit River in St Johns hospital. Canada was a stones throw away. The moment he was born I knew in my heart that something was wrong. (east china, st johns, and Canada was a clue from the start) πŸ˜‰ Little did I know that almost exactly 18 months later Chad would be gone and he would be diagnosed with a “little disorder” called autism.

Life has been rough. Chad died. Preston got diagnosed. I struggled for years. About 5 years ago I looked into placing him into the “system”. I searched for group homes and none to be found that handled minors. The only way I could place him was if I signed over my parental writes and left him in foster care homes. This would have ended in tragedy. Or I could have abandoned him and then been charged with abandonment, never be able to work with kids, and had a felony on my record. I knew that wasn’t the answer so I put on another pair of big girl panties and sucked it up and said I can do this. Its my only choice.

Fast forward to September of 2012, I heard about the great lakes center and started the process to get Preston into this center. They provide INTENSIVE ABA therapy. Its a challenging therapy to do. I did it when he was younger. It costs on average $100 an hour with mileage to do this. There are less than 40 therapists in the state of michigan that are licensed to provide therapy. About 12 that work with children with autism. But it was the only shot I had. The goal was for preston to go there and get the treatment that costs $800 per day (approximately $320,000 a year) and when he came home do my best to find people that I could train to do the therapy. In all honesty Im not 100% Preston is capable of learning ABA to the extent that I need him to in order to diminish his behaviors. Im not sure I have the strength to train others. Im not sure that this is the best option. HOWEVER, you don’t know until you try and its the only option.. so Ive been fighting for almost a year and still at a stand still with no answers.

In the meantime. My son continues to be medicated due to behaviors, these medications make him eat non stop. The non stop eating makes him gain weight. The weight gain makes him HUGE and unable to physically control him. I get my ass beat daily. I say this with ZERO exaggeration. I can sit here and tell you over and over how bad he is but there is NOT ONE PERSON that could EVER understand the complexity of Preston’s disorder. Nor the complexity of our lives. My life is literally based upon Prestons needs. What time I sleep eat and drink water all depends on Preston. Let me repeat: I AM NOT EXAGGERATING! This is hard to admit, but I am literally thanking God every morning when both Preston and I are alive. This is also hard to admit: I have contemplated killing both Preston and myself many times. My faith and Christian background has prevented that.

Fast forward to a recent appointment with Preston’s long time neurologist. He hasn’t seen him in a year and our recent visit is quite simple. He was in shock. Preston was having a “good day”, in my opinion. He wasn’t being bad he was just his normal self. Bouncing off the walls (literally) jumping yelling..etc. The neurologist asked my mom to take him outside for a walk. Literally out of the building so not to disturb the other patients. She did. He shut the door pulled me close to him with tears in his eyes and said, “you can’t do this. He is out of control. He is big and could hurt you”. I started to cry and told him about Great Lakes. He shook his head back and forth and said “he is too impaired and how in the hell are you going to do treatment afterwards with no support”? I said I don’t know but I have no other options. He quickly told me about a home for boys that is ran by catholic priests that has been around for years. He is personal friends with 2 people on their board of directors. He called as I sat there shaking, worried about my mom and P outside. He hangs up after he asked some very crucial questions. They were from what I recall: do you have availability, do you take minors, do you accept medicaid and does she have to give up parental rights. the answers were yes, yes, yes, and no. I was told to call before 3:00 that day and they would be expecting my call.

I called. I took a tour. I signed the paperwork for admitting him. Phew I said it. kind of. Okay let me try this again.

I am seriously considering Preston into a permanent residential facility for cognitive and developmentally delayed adults and children.

Okay I said it. They may not accept him due to his challenging behaviors. Our intake appointment and interview is this Friday. I’m praying they take him and I have talked to them about a two month trial period. If it doesn’t work, Ill continue to fight for the treatment facility at Great Lakes. However, my gut tells me that this is the right path for us. I’m scared. I’m beyond words of sadness. I’m crying every day. I’m struggling. But I don’t know until I try right? I have tried EVERYTHING I possibly could with the resources I have Β had. I have spent every dollar I could and now the money is gone. I have used every inch of patience, love and nurturing I have had. Its depleted. I consider killing us to end the misery. I’m “tapped out”. I’m waving my white Β flag.

Tomorrow is my baby boys 13th birthday. I can’t believe it. Im distraught. I debated on whether or not to have a party, knowing this could very well be the last party at “home”, but decided to have a small gathering of very close friends. Its going to be tough. P loves bugs particularly bees and ladybugs. Kroger has toppers of bees and ladybugs for cupcakes so I went in to order them today and they have some premade but they aren’t the frosting he likes or the colors he wanted. (I asked him last week what he wanted for his birthday cupcakes or cake. he chose pink and yellow cupcakes with bugs) She told me I had to pick something else. You would have thought she told me somebody died. I started crying out of control. She apologized over and over. Then I explained that i was sorry it wasn’t her fault and that my son has autism and that he is probably going into a home and that this is his last party at home and he wanted those bugs. She cried, she hugged me. She said “well lets get those fucking bugs off those cupcakes for him!” lol God bless her. It meant so much to me. So my peanut is getting his bugs. πŸ™‚

So tomorrow.. I’m going to try and make him happy. I hope seeing the people he knows in his life helps him to understand that they care about him. I can only pray that he understands how much he is loved. My last blog was on Chads birthday one month ago. Now its P’s birthday. I still can’t believe this is a choice I have to make. I hope he can thrive with the consistency. I’m sure ill be blogging more now that I let the cat out of the bag.

I haven’t been able to write. Yeah I’m crabby. I’m sad. I’m numb and mourning. I just lost my uncle who would be so proud of me for my choice. He hated seeing me in such turmoil. I also just lost a best friend who left behind her husband and her son who had autism. I have wanted to call her so much lately. I hope she can see this and I hope its a success. Because quite frankly, her son is not far behind Preston i’m afraid. I hope I get support from my autism friends. My “typical” friends and family support me 100%. Its my autism family that I have felt no love from. I need validation right now. I feel so many things but this is enough for one night. My chest is tight. My doctor thinks Im at risk for a heart attack. My blood pressure is high, im over weight and over stressed. I’m supposed to breathe deeply and slowly when my chest starts tightening. So enough for now, I need to go breathe.

Please pray that the center accepts Preston. Thank you. Lisa completely insain….

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56 comments on “The hardest blog I’ve ever posted

  1. Lucas says:

    Lisa, I can only say with tears in my eyes and pain in my heart, that we love you and P! I cannot imagine how hard this is for you guys, but I think we all know that when one contemplates death, something’s got to give. I hope at some point you will feel you have made the right decision, as you have NO CHOICE here and you obviously know this. I hope for both your safety this happens for you and P, I believe your physician is correct for specifically that reason! Love y’all to pieces and we will be there to share his 13th birthday.

  2. sherry legue says:

    I tried to reply but cant see through my tears Bug , but this I know for sure , God is listening and knows you cant take it anymore … he gave you this because you are STRONG , and now your strength is gone , your dreams of helping others is going to come true… he has you Sis and yes your Uncle Tim has your back !!! Everyone knows you have tried everything !! And anyone that doesnt have your back , as I have told you so many times before just does not GET IT !! Your ” Autism ” family has never had it as bad as you , not that I am diminishing their lives .. but they are NOT as severe as our Peanut … well there you go I guess I did have some things to say to you , it is just easier to say What I want to say this way !!! I love you so much and so does your Brother , we WANT our LIsa BUg back , you have lost yourself in all this baby girl , and to help others this needs to be done !!! And in my heart I know its going to be good for Preston . I do understand all you are going through < I have cried my eyes out and Prayed more than I have ever prayed in my life … Had dreams … had nightmares , but I believe in my heart of hearts its because we love him so much and it is all going to be OK !!! God Has us SIS !!! I love YOu !!!

  3. M. Smoot says:

    Lisa, what a great doctor to want to really help you. Hopefully, all will go well and just remember that its not a forever place for Preston.

  4. Verina Keely says:

    Lisa,I will be saying a very long and a very powerful prayer for you and Preston tonight. Happy Birthday, Preston. You are doing the right thing. Lisa. Preston needs your strength, good health, and love. You know that none of this is possible if you do not take care of yourself. It is now time for that. You have done all you can do for Preston. All of us have to seek help at one time or the other in our lives. Now is your time. Lots of love your way. Lots of prayers being sent for peace and resolve for you and Preston.

  5. Christina says:

    Lisa, you are such a good Mom! Every single time I read your blog I am just in awe of you. I think I can call myself a strong woman, but I can’t hold a candle to you. Reading your posts makes me feel stronger… It makes me feel like “If I can just be half as good at this as Lisa is, I will be the kind of Mom Kaleb needs me to be.” I know that you are struggling and I will pray for you and Preston. Please know though, that the way you fight is nothing short of inspiring. Big Love from my family to yours. πŸ™‚

  6. I’m positive the ‘autism family’ you speak of not showing you love are the ones with mild cases and/or Aspergers….Only someone with a severe case and no help could possibly understand. I’ve thought of all the same things you have and my son is not abusive toward me at all! Sending love and TOTAL support! I hope he does great there!

  7. Gillian Brody says:

    Oh, please let them except Preston! This priest surely must be sent from heaven. Finally, a doctor that listened and actually helped. I pray for you everyday. Only you, Lisa, knows what is best for Preston. I believe, as a medical professional and friend, you are doing what is best. Not only for you, but for Preston. I love you… And I’m proud of you. (((((Hug)))))

  8. Meredith says:

    Your mom hit the nail on the head about the group. We defiantly don’t know what it is like to have the fear and anguish over your child everyday the way you do. My heart aches for you. Me also having just the one child and being pissed that I have been robbed of the typical experiences my other friends and family gets to experience. I can associate with that part but not the meltdowns and physical abuse you endure on a daily basis. I also worry that I will get a message that Preston has killed you or put you in the hospital. I pray for you that this center will take all that into consideration and take Preston and give you time and peace to get yourself healthy. I will have all fingers and toes for you on Friday.

  9. dorothy says:

    Lisa, my prayers will be with you and Preston. I think you are an amazing Mom, truthfully I don’t know as I could have done what you have. you and your mom have been terrific with P. Good Luck to you and Happy Birthday to Preston

  10. Gretchen says:

    I’m praying for all of you. What an absolutely gut wrenching decision to have to make. Sometimes the hardest things we have to do as a mom is to let go of our kiddos. My heart tells me you’re doing the best thing possible for both of you. May Preston get the interventions he needs and you get the rest and peace of mind that you so badly need as well. Sending hugs as well.

  11. thestatuswoe says:

    You are a superhero Lisa. You are. Never, ever doubt it.

    It’s very dark at our end of the spectrum. But someday the light will shine on all of us here. Please be safe until you have help.

  12. Dovi's Mom says:

    Lisa,
    I’m a mom who knows and feels your pain.
    My autistic son is only 5 and I’m starting to look into residential schools, bc I know it’s the only way he can really learn and the only way my family can really survive with a child this challenging. I’m not sending him yet at age 5, but I have my options open.
    i cry every day at the thought of sending my baby away, I can’t breathe.
    But it’s going to have to happen one day.
    But the future isnt over for Preston. He has a great, bright future at the residential school, where his behaviors can hopefully b helped and he can still come back home to live at some point.
    The four schools that I know that come highly recommended are the Boston Higashi School, the NEw England Center for Children, The Center for Discovery in NY, and Foundations for Behavioral Health in Pennsylvania. If your school doesnt work out you can look into these four.
    Good luck and ((HUGS)). It’s a wrenching, wrenching decision. and it’ll b beneficial for you both. But it feels like death.

  13. Anony Miss says:

    Praying for you.

  14. Julia says:

    Lisa, I can’t imagine how difficult this must be for you. You never know; this could be an environment Preston flourishes in – an environment in which he finds purpose and help. It is worth it, for both of your sakes, to give it at least a trial. My heart goes out to you. I pray you peace…

    • lisasain says:

      Hi Julia,
      You are exactly right. I am trying to look at it as another therapy. I wont know unless i try. I once told someone that if someone had told me that if I rode a horse naked at midnight every night for 15 days then chopped my arm off when i was done that it would help treat Preston, i would have done it. Life has not worked for us. THIS is not working, so i must try something! Thank you very much adn my prayers will be answered if he thrives… πŸ™‚ I knwo that is a possibility! TY!!!! πŸ™‚
      Lisa Sain

  15. Sarah Almond says:

    I may not know you, but I hope I can send some good thoughts your way…

  16. Your position is an awful one. My son is five, and the lashing out isn’t nearly so bad yet. I hope it never will be. But even those little glimpses tell me the absolute truth in what you are saying. You are doing the right thing. The absolutely right thing. Whether it works or not will be a whole nother story, but you can’t allow yourself to be killed or to be ripped apart to the point of being suicidal. You have to do something, and this is a loving decision made to protect yourself and Preston. At the very least, it will buy you a couple of months of breathing space to think through the situation.

    • lisasain says:

      Thank you Jesterqueen,
      I have words of advice for you.. DONT GIVE IN TO YOUR SON! Also consistency is crucial show your love through consistency! Thank you for writing and you have a long road ahead but most cases arent like mine. I am sure he is a joy to be around. I swear the AI kids crack me up and I love them so much.. especially on their good days! TY for reading and caring!
      Lisa Sain

  17. Deb V. says:

    Hi Lisa,

    I found your blog via a Facebook share. Just wanted to say I am thinking of you and your son. I have a child with Asperger’s and severe psychiatric illnesses, and there have been days when I literally thought I could not do it for another moment. Hang in there. It sounds like you are doing the right thing. Our son, too, is about to enter a residential placement (totally different story, and different type of kid, I think) and while it is the hardest thing we’ve ever done, we think it will be life-changing both for him and for the rest of our family. So just know you are not alone…not by a long shot. It was brave to write honestly about your darkest feelings. It sounds like you have lots of family support, which is awesome. I wish you and your son and family all the best. Take care, Deb

    http://www.thestripednickel.blogspot.com

    • lisasain says:

      How old is your son.. I am so THRILLED to know I am not alone in my journey. I am so sorry for the sppot you are in. I have so many questions for you. I am sure your son is probably 18 though … I look forward to reading your blog. Hang in there striped nickel… THANK YOU FOR READING AND SHARING!
      Lisa Sain

      • Deborah Vlock says:

        Lisa, thank you for your warm thoughts. How generous to be thinking of others in the midst of all that pain and struggle. My son is almost exactly Preston’s age! He turned 13 in May.

        Listen, i feel like I might have stuff to share that *could* be of help. If you want to email me at the address on my blog or through my website, deborahvlock.com i would love to connect. (don’t worry if it takes a couple of days for a respone–things are a bit nuts around here right now. I am so glad to see all the wonderful commenter support here! Take care, Deb

      • lisasain says:

        Thank you Deb, In due time I will get in touch.. SOOO much going on! Thank you for your support! πŸ™‚

  18. GERLE WEBB says:

    You have to know that this is the BEST thing for your son. He needs to be in a safe environment..that’s the bottom line. You’re his mom. YOU, more than anyone else, know what’s best for him. You should be proud of what you’ve accomplished thus far. You are an AMAZING woman. Don’t ever let anyone tell you otherwise.

    • lisasain says:

      Hi Gerle,
      So I am a weirdo, but living alone without supports I post messages on the walls and refrigerator to myself. They help me during really gut wrenching times when he is being violent. Through tears i read them and think, I can do this I CAN do this, I will do this”. ANyways your post touched me because my latest “wall hanging inspiration’ reads, EVERY PERSON NEEDS AND DESERVES TO BE SAFE AND HAPPY! That is ht ebottom line! Thank you for the validation.. πŸ™‚
      Lisa Sain

  19. Heather says:

    Lisa I don’t know you, I was sent here from another autism parents page. My prayers are with you, my son is also autistic, but does not have the violent meltdowns you have described. It seems that you have tried and exhausted all other opportunities. You seem like a very good mom, and I pray that this home is an answer to your prayers. You and your son will be in mine! ❀

    • lisasain says:

      Hi heather,
      You are very lucky not to have these behaviors. They are downright awful. Although even without the major behaviors you have other issues. Its all tough stuff. Thank you for the prayers, we truly need them. God Bless you and your family and thank you for the support!
      Lisa

  20. Merrilee says:

    Lisa…thanks for sharing yours and Prestons story. You are strong and you have done well for him. Hang in there and be safe until you get help for Preston.
    Happy 13th Birthday to Preston!

  21. Jenn says:

    Lisa, my heart is breaking for you. I can’t exactly identify with what you’re going through but please know this autism momma has your back. Only YOU know what is best for your son and for you…that isn’t for anyone else to decide. We should only be here to hold your hand, rub your back, and listen when you need an ear. The fact that youve endured so much and are still breathing and kicking says so damn much about the kind of momma and person you are. I have a ton of respect for you and how you’ve raised preston. I will be following your story from now on. You have my ear.

    • lisasain says:

      Thank you jenn,
      I truly appreciate the support, especially from a parent with a child with autism. I suppose hearing from autism families helps me to not feel so guilty. I dont know why. I need their support and compassion during this time. I dont mean to feel so needy but this is the toughest choice i will make. Thank you for reading and caring.
      Lisa

  22. Jennifer says:

    I don’t even know what to say that doesn’t sound trite and pathetic in terms of encouragement. There aren’t sufficient words to express how much I wish I could help you, rescue you and Preston. It probably sounds crazy but I swear to God if I ever win the lottery, you will be taken care of. You are amazing. You are heartbreaking. You are inspiring. You are so SO strong. You are NOT alone. Please keep writing your story.

    • lisasain says:

      Well after reading your post, your name does not seem fitting, “slimshadyjenn”…;) you don’t sound in the least shady and if you do win that lottery, I’ll be happy to meet you!!! lol I would be happy to meet you now even…;) Thank you for the kind gesture…I appreciate it.
      Lisa

  23. I truly appreciate your honesty and vulnerability in this post. We parents all struggle with whether or not we’re doing the right thing … I can’t imagine the emotional struggle you’ve had. Bless you and thank you for sharing this. I wish you and Preston the best. I hope that he has a smooth adjustment and I hope that you find peace. xoxo

  24. Amanda Hoffman says:

    Lisa,
    I may not be a parent of a child with autism, but I work with autistic children in the summer. You are doing the right thing!
    Keep your head up!
    Amanda

  25. jillsmo says:

    You don’t know me but this stranger in California is thinking so much of you and yours ❀ ❀ ❀ ❀ ❀

    • lisasain says:

      Hi Jillsmo!
      A stranger caring is just as good as my friends and family caring, Thank you from the bottom of my heart. Its nice to know that people care … PERIOD. Happy 4th of July…:)
      Lisa

  26. Tina says:

    I don’t have a child with autism, but I support you. This is going to be a good thing, for both of you. You need a breather, or you won’t be around. I will keep my fingers crossed.

    • lisasain says:

      Thank you Tina,
      Having people tell me that over and over is very helpful and almost validating. I appreciate it. ENjoy the 4th and thanks for reading. πŸ™‚
      Lisa

  27. cathykal says:

    Lisa, I’m sending prayers. I’m an autism mom too & my son has been in residential treatment for over a year (see the post “the biter” on Autism Home Rescue) but I am still hopeful. There are champions in every system & if you keep writing & reaching out you’ll find them. xo

    • lisasain says:

      Hi Cathykal!!
      How amazing that I am finding other moms who have placed their children in residential! I will read your post and I cannot thank you enough for posting a reply to me! God Bless you and hopefully chat soon! πŸ™‚
      Lisa

  28. I found your post through a share on Facebook and I have tears streaming down my face after reading this post. At 9, our youngest is demolishing the house around us and hurting us daily. He’s still small, though, and I know how overwhelmed we are at the thought of what we’re going to do, how we can possibly help him … it’s killing us emotionally. He’s the youngest of three boys, all of whom are on the spectrum, and we’re emotionally and phsyically exhausted.

    Right now, this is the most honest I’ve been about how destroyed we are because of his behaviors … I can’t imagine exactly where you are but I empathize with you. Sometimes, in life, we’re forced to make decisions we never imagined having to make. Know that we’re praying for you and thinking of you. {{hugs}} And kudos to your son’s doctor for seeing what you weren’t able to see.

    • lisasain says:

      Hi Katrina,
      Im very sorry about your youngest sons behaviors, Im sure its taking its toll. I can tell by your post. Where do you live? Having 3 on the spectrum? Wow… challenging to say the least. I can empathize with you on the behaviors. I wish there was something I could say to you. Im sure youve tried every medication etc. My son was always this hard. He has just gotten so big I cant control him anymore. hugs to you in your battle.
      Lisa

  29. Kimberly says:

    I have never struggled with the types of struggles you bear, but I feel in my heart that when choices are made from a place of deep love, they are rarely wrong. The love you feel for your child is clear. The choice is hard. And sometimes the hardest ones are the choices that remove us from the ones we love for the benefit of that child. You are no less of a parent because this is the choice you are making. In fact, I would argue that it makes you a fantastic parent.

    My heart will be with you on Friday.

    • lisasain says:

      Thank you Kimberly.. Its very hard to remember this at times but i need to believe that myself and then remember it. It comes and goes in waves…i appreciate your response, you reading, and you caring.. TY..
      Lisa

  30. Dani G says:

    Lisa, I’m a fellow metro Detroit mom raising a kiddo on the spectrum. I am so glad you’ve found a great doctor who can help you AND Preston. You’re doing what’s right for you, for Preston. Your feelings are valid. Feel them. Allow yourself the dignity to feel the grief, the fear, the pain. But then trudge forward, like I know you will. You’re obviously a fighter. And a hero.
    Sending hugs and love your way.

  31. Holly says:

    praying for you. (((hugs))) you are a brave, strong woman.

  32. nicoleramage says:

    Lisa,
    My thoughts are with you. I am the momma of a 2 year old Aspie and while he is very high functioning, I completely understand the overwhelming feeling of drowning and not knowing what else you can do. It’s a hard decision but I believe you are making the right one.

    • lisasain says:

      Hi Nicole,
      Being an Aspie parent presents so many other challenges that are extremely difficult. Its a whole different ballgame and I don’t envy you. Just remember to always keep fighting for what is right. It is a social disorder and the aspie children need to focus on their strengths and build solid friendships that help build self esteem. Knowing appropriate social boundaries in all aspects is one of the most important things. Hang in there and thank you for the support. It means a lot! πŸ™‚

  33. Aimee says:

    Poor Sweet Brave Lisa!
    We’ve never met, but I’ve read your entire blog and feel so deeply for you and your darling baby boy. I got into the Autism world when Amy Wink Krebs ‘Winklett’ wrote a piece for CNN’s Autism Awareness Day a few years ago. I went back and read every word on her blog – the piece she wrote for CNN was about 6 months after she put her then 10 year old son and only child into Residential Care. My heart breaks for parents making this choice. Her case I find especially poignant as she is adopted; Jonah is her only biological relative that she will likely ever know and he lives over an hour away from her. Reading her blog ‘Normal is a Dryer Setting’, I have no idea how she held out as long as she did. Sorry to ramble, but my point is that you deserve SO MUCH MORE than to merely stay alive from day to day! There are people out here in the world who love you and Preston and want so many good things for you!!! I probably sound like a creepy stalker (please. I have Lupus & I just don’t have the energy required to stalk someone, I assure you! Lol), I just want you to be happy. Sorry if I come across as creepy, but you are loved and respected for what you have been going through.
    Aimee

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