First Blog ever..

     Well here it is. I’m starting a blog…I have so much to say that writing on facebook just feels awkward. So as recommended by many I am here to blab and mostly doing it for selfish therapeutic reasons. I am also hoping that if you know someone who faces a challenging life, like myself that you will somehow let them know they aren’t alone and hopefully we can connect and exchange stories and feel somewhat normal in a not so normal world of autism. Ill do a bio later but most know my extremely dramatic story. I don’t do anything half assed.. 😉 Meet boy, fall in love, get married, he dies, and 4 months later our son is diagnosed with severe autism. That’s the short version…

Today something profound happened but in order to understand you must know at the point I am with my son. There are no words that can describe our world. I call it our world because it is nothing like yours. (for my” neurotypical” friends anyways) Our home is consistent with one thing. Insanity. Period. At any given time you may find us eating our dinner in the middle of the driveway. Going for walks in rain gear on a hot summer day or see us in shorts on a brisk fall day. You may see us walking in a blizzard or bike riding in the rain. WHy? Because it makes the prince happy. He requires MASSIVE amounts of sensory driven activities. He has autism. He was just potty trained last year. He is 12. Yes I have cleaned poop and pee for 12 years. I have cleaned poop from the floor, the walls. the toilet, the kitchen, doorknobs, bedding, ceilings, light switches, my head, my hands, my face, his face, head, and hands, I used to call my house the poop palace, but clearly its Preston’s palace. He will kick holes the size of a suitcase in the walls, damage pictures, throw tables, chairs dishes, food drinks, or himself whenever and however he feels is the right time for him. Mainly during meltdowns and being told no over ridiculous requests. For 11 years I have spent every last dollar on therapies for him. I am foggy on what has worked and what hasn’t. He is big now. It hurts really bad when he kicks, bites, punches, pushes, and shoves and head butts me. I’m tired. No i’m exhausted. No i’m emotionally and physically exasperated. I decided some time ago it was time for drastic change. Not sure how or when or where but I knew something had to give because I’m losing it. Literally. My hair is falling out, I have aches and pains and most recently sharp chest pains. Some days I can barely function. My brain is toast..constantly worrying and constantly thinking of whats going to happen next. Its time to get help. Ove rthe holidays i thought he brokemy arm and had it x-rayed. It wasn’t broke but when they noticed the bruises up and down my arms, they asked if i wanted to make a police report on my child. Really? Ummm reality check. I’m being abused. I have been for 11 years…now tell me that isn’t disturbing!

My goal:

  1. Temporarily place Preston in a residential facility so that I can rest and have a clear functioning brain to make the right choices for his future. 
  2. Make a plan for the impending release of him from the facility that meets his future needs
  3. Find a facility
  4. Find a way to pay for facility
  5. Get therapy to help me know I am not a bad parent for doing this
  6. blog every step of the process so hopefully others will benefit in the future

So I found a facility its called Lighthouse Center in Caro Michigan. WOOT WOOT! That’s number 3! Its…. GULP >>>> … How much?? $900.00 a day? Private pay insurance doesn’t cover it? Oh okay I need to work on number 4. Oh wait after about a month of contacting lawyers and googling resources and centers and insurance companies and state representatives.. HEY.. guess what, ARC of Midland County is my saving grace. Yep a non profit dedicated to helping families living and dealing with autism. They heard my story and I talked to the executive director. The ball is rolling…they will try and help me get the temporary facility covered and come up with a plan for Preston. I was not wrong. Its in the Americans with disabilites act: My son has the right to live in a safe and comfortable environment outside of our home with properly trained staff and that doesn’t mean I give up my parental rights, contrary to what I have been told forever. 

I’m scared and excited all in one. The day that he goes to live somewhere else temporarily will kill me, however if his behaviors do not get under control this is his future:

Kicked out of school, placed in foster care, bounced around from group home to group home, because of non manageable behaviors, eventually so highly sedated that he will just lay in a bed developing decubitus ulcers, or sit in a rocking chair..think of: “One flew over the Cuckoos Nest”, yes that bad. That is my son’s future unless I can get him under control and it’s kind of a time bomb.18 is not too far away when he is almost 13 years old. The thought of this gives me panic attacks almost on a daily basis. 

Okay head, don’t go there, ARC of Midland County, thank you. For the first time in months I don’t feel so defeated. 

So buckle up people…I’m going to need to vent. This is going to be one of the toughest decisions I ever make. If my plan fails, I have no plan B. So failing as usual, is not an option in my world.

Someone find my cape please… the rest of you,please pray.

Pray that I get the help and resources and strength and courage I’m going to to need to fight this battle ahead.  

Oh yeah and get my research papers done on time,( I’m a full time student obtaining my elementary and special education degrees) keep up my laundry, pay my bills, try and work, keep up on medical forms, schedules, meetings, therapies, lose weight, LMAO, try and find a boyfriend, wait try and have fun, remember to take my pills, pretend to others I am normal and happy, put on make-up and do my hair (when I look nice on the outside people think I’m okay) give Preston his pills, keep up on the daily school notes and programs, make sure I make time for a therapy visit for myself, take the trash out, Play word, do the dishes, post on facebook, go to the bathroom, try and poop…oh yes and for goodness sakes.. I have got to try and shower daily. Shaving my legs would be nice more than once a month. LMAO okay okay…I know that’s asking for a lot. Stay tuned… Image

 

 

 

 

 

 

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24 comments on “First Blog ever..

  1. Chris says:

    awesome! I’m excited about this new development.

  2. Sabrina says:

    Good luck Lisa. I hope it all works out as planed i will be praying for you and Preston. Love you

  3. Laura says:

    Praying for you Lisa!!! I’m so glad you found the Arc and they are listening!!!

  4. RLS says:

    Your blog left me humbled for not always appreciating all that I have; sad that in the greatest country in the world it is such a struggle to get the necessary assistance that you and Preston desperately need; proud that despite all of the challenges you face – every minute of every day – you are in school; and fearful that you will second guess your decisions and be consumed with guilt and anxiety. You are loved, adored, and admired. You have always made your decisions on what is best for you and Preston and don’t let anyone suggest otherwise. Love, Ramona

  5. Lorrie says:

    Amazing first blog, sweetie. You really laid it out there in the most profoundly honest way. No one will ever come close to truly understanding how bad things are for you–because all we can do is imagine it through your stories. The meltdowns, the physical abuse you suffer with, the constant worry. It’s mind-boggling and yet, you still put on your smile and pretend that you are normal and happy. There is nothing normal about any part of your daily life and I am awed by you, and how long you have been doing this for. I am also scared for you, physically, mentally, and emotionally. If venting here is something that will help–then everyone who loves you expects you to do it. You have incredibly moving and sometimes funny stories. Please share them regularly with the world, so that those who don’t know what you are challenged with daily, can be provided with a little “reality” and maybe not be quite so asinine in their judgements. Ignorant people piss me off. This is your opportunity to give them a little education. Don’t let them piss ON you! Keeping you in my prayers as always….that ARC is gonna come through for you. You deserve normalcy more than anyone I’ve ever known, and I’m praying that it comes to you very soon. Love you!

  6. Dee Farmer says:

    Lisa, I am so truly proud of you and all you have accomplished. I am so happy that you have found some desperately needed answers and help. I personally do not think you are a bad mom for your choices. I think the exact opposite. You want what is best for your child and that’s what great moms do. You have searched high and low for the right answers and have fought mentally and physically to get them. You my friend are an Amazing Woman. Keep your head up, stay strong and know you have people beside you every step of the way.

  7. tammie manor says:

    Amazing Lisa. Love you bunches

  8. Gillian Brody says:

    I have been to Lighthouse Center in Caro. It is a very nice facility! I can’t believe private insurance won’t help cover it…. Then again… It doesn’t cover much of anything, so I guess it shouldn’t surprise me. I think what your doing I’d a good thing. You can’t physically or mentally continue to care for Preston on your own. Be strong. Ignore the haters. They don’t live your life. They don’t understand. Period.

  9. robin lewis says:

    Stay strong!!!! My heart and soul gors out to you and preston!!! With lots of love and prayers to both of you!!! And always know that two men are watchin over both of you!!!!xoxo

  10. Lucas says:

    Keep on keeping on sunshine girl! You are an inspiration to all and your efforts will pay off for you, “The Prince” and for those who do not know where to begin. Strength breeds hope and you will do that for so many…P will do well because you demand it for him, even at the cost of your “Sainity”. A mother never gives up even if it kills her…the price of being Mama is sometimes taxing, yet you are living proof that the more life dishes out, the more you fight. As many times as you have wanted to give in, you haven’t done it. You can only fail if you quite trying so just keep swimming wand know you are loved, supported and worthy no matter what decisions you have to or need to or want to make. Love and smooches.

  11. Mihailoff@chartermi.net says:

    Lisa this is an amazing idea. I had no idea. I send you strong hugs and huge prayers. You do deserve this. Preston needs a strong sharp minded momma. And it sounds like he doesn’t have that right now. This is a great thing for him. Good luck Hun….

  12. Shawn Moore says:

    WOW…is a I can say! This is awesome and I am soooo glad you have this outlet. You say what so many others are scared to say and I know you will help many, Lisa. Keep your head up mama and I hope and pray that you and P both get the assistance you need and deserve. I cannot imagine what you go through daily, but I do know that you put all of your effort into making P happy and making sure he is safe. It’s okay to get help and not feel like you are giving up…everyone needs helps at times. Sounds like you have many that love you and will be here to help you through this process. Love you and still admire you!! XOXO

  13. Leslie DeCaire says:

    my son is also severely autistic, but honestly, not as bad with behaviors as Preston thankfully, but I feel overwhelmed sometimes with what I have to deal with too….I’ve also thought about putting my son in a ‘home’ in the future (temp or not), but there’s so much to consider and yes, the feeling of being a ‘bad mom’ I completely understand! can’t wait to hear how it goes for you….hoping for the best ❤

    • lisasain says:

      Hi Leslie,
      Unfortunately that is probably the future for most kids with autism unless they are very high functioning.
      However, I have learned that this doesn’t mean doomsday! Many times children with autism thrive under the consistent and controlled environments, that families just can’t provide at home.
      So if you think your child may eventually end up in a residential facility or group home my advice is to voice that out loud. I have for a few years now. It took a year of admitting it and saying it out loud before I wouldn’t cry while doing it! Now blogging about it. 🙂 is it easy? No. But healthier and hopefully if I’m able to help just one other family it’s worth our ” life on the line”. 🙂 happy reading Leslie & hang in there 🙂

  14. Michele C. says:

    Lisa, you are one amazing Momma! You have done what any normal mommy would do…the absolute best they can for their child, even when it’s killing us…it’s what we do. Prayers for you and Preston!

    • lisasain says:

      Thank you Michele!
      It is VERY HARD to disclose such information. This isn’t a movie or a story, it’s our very private life exposed. However it feels good to ” come out of hiding” & try my best to explain our situation. No words can describe the pain I feel in trying to do this yet, I know it’s for both of our best interests. Thanks for reading & your response! 🙂

  15. Angela Schaeffer says:

    Miss Lisa – We can read your words and so “Oh, I get it.” But the truth is that we can’t ever comprehend your pain. What we CAN do is love you, support you, pray for you, and do whatever we can to be supportive. I think this blog is such an excellent way to get your feelings out. Sometimes, when our fingers touch the keyboard and our thoughts are unloaded, we do get a level of peace that allows us to move forward another second, minute, hour, day. People like to say that God doesn’t give us more than we can handle, but when we examine what you are going through, we can only imagine that he must think you are pretty strong. Though you may not always feel it, you are. You have a strength of character and will that can’t be measured. Even at your weakest, we can’t come near to withstanding what you do. I have faith that you will get peace one day. One day lady…one day… Until that day comes, vent away my dear. Vent until your fingers are numb. Those who love you and care for you are here.

  16. Erica says:

    I don’t know you but a mutual friend of mine posted your link. I just wanted to say that I will remember you and your son tonight in my prayers. And also don’t let your feelings about finding care for him make you feel guilty, I think it’s incredibly brave and selfless. Good luck to you

  17. Lori says:

    I’m in a similar situation but also have two smaller children who he is abusing on a daily basis. I’m trying to find him an alternative home (not forever) but a residential and insurance won’t pay for it. I’ve been repeatedly told “theres no funding” and that I have to sign my rights away. I would love the opportunity to chat with you and pick your beain if you wouldnt mind. Would you be willing to email me? lorilate@gmail.com I am a single mother and am not receiving and child support and can’t work b/c of my sons needs and no one will watch him. I am seriously in need of help!!

  18. karen nichol says:

    Lisasain I just found your blog we have IDENTICAL children and lives in many ..I lived your life and still do..my son is in a group home 3 hours from me and there is no explaining the guilt and heartbreak. He is the sweetest boy.BUT there is now way to keep him safe unless you have 24/7 care .Thomas is 13 this month..im actually a special ed teacher..I too did everything right all the therapies 2 hours of sleep for 10 years ..watching my son hurt himself from frustration or and pain..you dont know because they cant tell you..its uncomprehending unless you’ve lived it..
    Your honesty is perfect and right on ..I think your the first time I can really say ..THS IS MY LIFE..there are hundreds of thousands like us im sure ..but they are too exhausted to do anything but survive..The government and people of america seem to ignore this is a NATIONAL epidemic that is hitting america.. these children need to be valued and the public needs to understand how badly they and we their parents just what one thing for them in the end…happiness. Thats it..the problem is there are only very few places for these children and adult children in all the US…shame on america as these children need help the most of any..it is equal too life threatening desise.they are in pain and dying inside every day unless they are helped.
    Meaning 24/7 help ..they need village of love and routine. I want to send you a picture on my son..its actually scary how much yours and mine look alike..Ive noticed the more severe the more angle like “cherub” face they have..different theory’s on that as well ..mine is they are angels..in tune to everything ..they are gods test..how others treat these children tells EVERYTHING about a persons REAL character..Im sure you have lost alot of friends and family when it comes to your son..you find out l fast who chooses to deal with it and who chooses not too..as there is not a second of convenience or relaxing with this type of child …ever!! Yet there love is truly magical as they are the sweetest loving children in the world..they are pure innocence..pure love..like a baby..unconditional love.
    Gotta run..if I cant send a picture I do it on face book. Karen and Thomas

  19. Look in Thomas album..He looks like your son . (I think so)
    My sweet angel!! Has a brother Johnny just turned 15. Its been tough but I KNOW theirs always a plan that we cant see..we just have to keep believing and keep moving in the right direction inch by inch for these children.

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