Goals: Happiness, safety, health

I haven’t been able to write lately. I’ve been living in this fog. Kind of going through the motions and not really realizing that P is in treatment. He has been there for one month today. I was in a war for so long. A war with Preston on a daily basis, a war with trying to get help, a war with my own health and emotions. It’s finally sinking in that he is in treatment. It’s harder than i ever thought it would be. I cry openly, I cry secretly, I have to put my emotions “in check” on a daily basis. For 12 years I have battled with stupid autism. I have pushed many emotions aside, like my own. I lost my husband overnight. Then I lost my son to autism. Finally I lost him to treatment. The house is a silent reminder every second that i am here. Even my cat died 3 years ago. I feel victorious, please don’t get me wrong. However, I feel really lost. I’m pushing 40 and just had a tubal ligation (had my tubes tied). I wont ever have any other children. I’ll never be a grandma and my only child will never have siblings. It’s a hard thing to grasp. I won’t have any children at my deathbed. No grand kids to speak at my funeral. However, I do realize it is by choice. I am a very religious person and struggled with my choice for permanent sterilization. In the end, I feel that God understands my choice. I just couldn’t do this all over again. It would be a risky game of roulette to conceive again. What if that child would have autism too? I couldn’t risk it. I just couldn’t. I’m sad. However, I know for me, it was the right choice. I’m trying to become accustomed to P being gone. It’s a huge adjustment. I am finally sleeping in my room in a clean bed. It’s been a week.. it’s nice 🙂 I don’t have the nightmares that kept me awake at night like I was. I still have them but not as frequent. I can drink water whenever I want to. I can cook whatever i want without worrying that the smells or sounds would send him into a fit or puke. I also get to shower whenever I want. That’s REALLY good! I feel clean.. i feel somewhat normal. However, it feels odd to do these “normal” things still. Every Sunday i still feel like I need to be home by noon to get him from my mom. Then I realize… nope.. do what you want. I have stayed away as much as possible from our home. Its hard. There are no words that can describe my life right now. Bittersweet is all I have been able to find. So here is the deal. He is doing very well. He has minimal meltdowns and has had ZERO episodes of rage. He sleeps through the night (with medication of course) and he seems to really enjoy the rigid and consistent routine at the center. Something that is not humanly possible to provide at home. I’m really happy about this. BUT……I’m also sad, because this shows me that P really needs to be in a permanent facility. It’s inevitable anyways. I knew when he turned 18 I would start looking into group homes for him, but I didn’t think it would happen or even be possible sooner. It is. It’s really hard to admit that i cannot care for my child the way he needs to be cared for. I feel like the biggest piece of shit. I feel like the biggest failure. I KNOW I KNOW, Im not.  However, as a parent its raw and true emotion that will never go away. I’m in therapy and hopefully I will be able to deal with all of this and eventually find peace. Hopefully I will get treatment for my PTSD.  Babysteps….Right now my goals are to accomplish one thing everyday in regards to Preston and to do one “normal thing” for myself. Whether it’s walking, reading, showering, etc. I have been doing that and exceeding that goal. It’s quite easy to adjust to showering daily 😉 So day by day i am trying to put MY life back together, and i’ve realized it’s okay to say so and do so. Kind of…. So the center will have a meeting soon in regards to the treatment P is receiving. From here on out they ( CMH, Great lakes, myself, and medicaid) will determine if he should stay in treatment. If everyone agrees he gets the approval for 3 months at a time. This will continue until treatment is over. The goal of the center medicaid and cmh is to have him come back home. As his Mom, I know that is not the best case for us. Why? Because he will go right back into his old routine of fits and rage. Preston trusts me more than anyone in his world. He knows if he wants something (especially in public) he can get naked to get pudding or a toy or whatever he wants. When he was younger I could scoop his naked ass up and take him to the car. He is bigger than I am. He is strong like a freaking bull. I give in. I don’t have the option to leave him home with dad or his brother or sister(s). P is very smart. He knows he can beat on my head as we are driving or move the shifter, or pull the steering wheel and I will give in and take him to mcdonalds. I cannot control my child. I can’t. I’m alone. We qualify for respite workers through CMH, however i have had so many quit due to his behaviors. They get paid $8.00 per hour. They could make more working at mcdonalds… NOBODY has stuck with the position for very long and they arent even left alone with him. I don’t blame them. The one person who has stuck by our side is my mom. However, its not working, she was overly stressed and developed health problems, had surgery, and is still recovering. I an’t count on my mom forever. Not to mention its not fair to her. She would do it if I asked her. But I’m not willing to sacrifice my mom, brother, and nephews lives anymore for Preston. He is  not their problem. Not to mention the type of therapy being done is intensive ABA therapy. You must be licensed and certified in the state of michigan in order to do this with P. I think in Michigan we have a total of about 33, and about 18 of them work with autistic kids….By law we are entitled to this therapy, unfortunately it just isn’t something I am willing to do anymore. I’ve been down this road before. It cost a CRAP ton of money. It was consuming, and if it isn’t done the same way in such a precise way by EVERY person who is around P, it fails. It confuses him and the plan goes to crap. I would have to fight fight fight for services. HOURS of documentation and constant data taking on paper. When P turns 18 our social security death benefits are gone. This is what i live off of. Preston was kicked out of 5 daycares by the time he was 4 years old maybe even 3. I have had to sacrifice working in order to care for him. I have worked for $8.00 an hour as a substitute paraeducator for as long as he started school full time. (7 years) I would work when I could. I based this on if I was able to get 4 hours or more of sleep. I didn’t work that much… lol So the point is, that when he turns 18 the benefits are gone. I have no degree although I’m close! What happens then? I need to make a plan for me too. I took a leave of absence from school. Eventually I will go back. So what do I do now? Where are we? PLAN A:  Well, I wait for the meeting which is Wednesday to hear if he gets approved for the 3 months of treatment. If not.. well I can’t even think about that, lets be positive… lol I need to gut my house. It is seriously damaged from P. I intend on selling it and moving to a home that is more accommodating to us both ( in case he HAS to come home and they don’t give us permanent placement at a residential facility). I need to get a job. His treatment is costing me $1200 a month. GULP!!!! Don’t ask how I am going to manage that… I guess the job I am going to get but don’t have yet. I am going to eventually go back to school get my degree and open a center for children with special needs. That has been my dream for a long time. That is why i invested so much of my time with the non profit that i helped start. However, that didn’t happen so i’m doing it the way I know it needs to be done. PLAN B: win lottery.. BIG LOTTO PLAN C: marry a rich nice man who will take away all of my woes….;) That’s it, that’s my plan. sounds easy enough right? I can do it. I have the biggest support system of anyone I know. Our recent fundraisers are a testament to that. Not to mention I’m crazy. I get my way. If it’s not handed to me i’ll get my way by fighting, sweating, bleeding, crawling, whatever it takes… I’ll do it. I’ve lost a lot of people this year and know a lot of people that have passed this year…friends, husbands, wives, uncles, dads, brothers, sisters, aunts, etc…..It makes you wonder what really matters in life. I’ve known for a long time. I learned my lesson on December 12th 2001. We all just want to be safe, happy, and healthy. That’s it. I never thought that my son would be institutionalized (UGH, I just grimaced typing that word, but I’m getting there), however he is and you know what, he’s happy. He’s safe. He has many people that love him. He is my hero. I pray so many times throughout the day that i am making the right choices for him, and the right choices for me. I also deserve happiness, safety and my health. and that’s okay. Eventually I’ll own it and so will he. Thank you for reading, thank you for caring, thank you so much for the support. Slowly but surely, we are putting the pieces back together. Day by day, hour by hour. I also need to say something else before I go, I need to apologize if  you ask me how  P is doing and I then respond by saying he’s good and walk away or then ask about your life. It’s really tough to talk about. Whats even tougher is that I know that nobody knows what else to talk to me about. Autism has ruled my life for as long as I can remember….But for now, its not something I can talk about openly yet. (unless you want to see my snot and tears) I’m not trying to be rude, and I care IMMENSELY about my son. However, every moment right now is tough. Being around your kids, being at the beach, the birthday song, seeing his favorite foods, doing something he would love… its tough. I really am choking back emotions… so please PLEASE forgive me. I want to just stay home and mourn, but i can’t. I need to go out and slowly adjust to this new life. Thank you for understanding…. 🙂 HUgs and lots of love from both Preston and I. 🙂

 

photo (5)

I haven’t been able to write lately. I’ve been living in this fog. Kind of going through the motions and not really realizing that P is in treatment. He has been there for one month today. I was in a war for so long. A war with Preston on a daily basis, a war with trying to get help, a war with my own health and emotions. It’s finally sinking in that he is in treatment. It’s harder than i ever thought it would be. I cry openly, I cry secretly, I have to put my emotions “in check” on a daily basis. For 12 years I have battled with stupid autism. I have pushed many emotions aside, like my own. I lost my husband overnight. Then I lost my son to autism. Finally I lost him to treatment. The house is a silent reminder every second that i am here. Even my cat died 3 years ago. I feel victorious, please don’t get me wrong. However, I feel really lost. I’m pushing 40 and just had a tubal ligation (had my tubes tied). I wont ever have any other children. I’ll never be a grandma and my only child will never have siblings. It’s a hard thing to grasp. I won’t have any children at my deathbed. No grand kids to speak at my funeral. However, I do realize it is by choice. I am a very religious person and struggled with my choice for permanent sterilization. In the end, I feel that God understands my choice. I just couldn’t do this all over again. It would be a risky game of roulette to conceive again. What if that child would have autism too? I couldn’t risk it. I just couldn’t. I’m sad. However, I know for me, it was the right choice.

I’m trying to become accustomed to P being gone. It’s a huge adjustment. I am finally sleeping in my room in a clean bed. It’s been a week.. it’s nice 🙂 I don’t have the nightmares that kept me awake at night like I was. I still have them but not as frequent. I can drink water whenever I want to. I can cook whatever i want without worrying that the smells or sounds would send him into a fit or puke. I also get to shower whenever I want. That’s REALLY good! I feel clean.. i feel somewhat normal. However, it feels odd to do these “normal” things still. Every Sunday i still feel like I need to be home by noon to get him from my mom. Then I realize… nope.. do what you want. I have stayed away as much as possible from our home. Its hard. There are no words that can describe my life right now. Bittersweet is all I have been able to find.

So here is the deal. He is doing very well. He has minimal meltdowns and has had ZERO episodes of rage. He sleeps through the night (with medication of course) and he seems to really enjoy the rigid and consistent routine at the center. Something that is not humanly possible to provide at home. I’m really happy about this. BUT……I’m also sad, because this shows me that P really needs to be in a permanent facility. It’s inevitable anyways. I knew when he turned 18 I would start looking into group homes for him, but I didn’t think it would happen or even be possible sooner. It is. It’s really hard to admit that i cannot care for my child the way he needs to be cared for. I feel like the biggest piece of shit. I feel like the biggest failure. I KNOW I KNOW, Im not.  However, as a parent its raw and true emotion that will never go away. I’m in therapy and hopefully I will be able to deal with all of this and eventually find peace. Hopefully I will get treatment for my PTSD.  Babysteps….Right now my goals are to accomplish one thing everyday in regards to Preston and to do one “normal thing” for myself. Whether it’s walking, reading, showering, etc. I have been doing that and exceeding that goal. It’s quite easy to adjust to showering daily 😉 So day by day i am trying to put MY life back together, and i’ve realized it’s okay to say so and do so. Kind of….

So the center will have a meeting soon in regards to the treatment P is receiving. From here on out they ( CMH, Great lakes, myself, and medicaid) will determine if he should stay in treatment. If everyone agrees he gets the approval for 3 months at a time. This will continue until treatment is over. The goal of the center medicaid and cmh is to have him come back home. As his Mom, I know that is not the best case for us. Why? Because he will go right back into his old routine of fits and rage. Preston trusts me more than anyone in his world. He knows if he wants something (especially in public) he can get naked to get pudding or a toy or whatever he wants. When he was younger I could scoop his naked ass up and take him to the car. He is bigger than I am. He is strong like a freaking bull. I give in. I don’t have the option to leave him home with dad or his brother or sister(s). P is very smart. He knows he can beat on my head as we are driving or move the shifter, or pull the steering wheel and I will give in and take him to mcdonalds. I cannot control my child. I can’t. I’m alone. We qualify for respite workers through CMH, however i have had so many quit due to his behaviors. They get paid $8.00 per hour. They could make more working at mcdonalds… NOBODY has stuck with the position for very long and they arent even left alone with him. I don’t blame them. The one person who has stuck by our side is my mom. However, its not working, she was overly stressed and developed health problems, had surgery, and is still recovering. I an’t count on my mom forever. Not to mention its not fair to her. She would do it if I asked her. But I’m not willing to sacrifice my mom, brother, and nephews lives anymore for Preston. He is  not their problem.

Not to mention the type of therapy being done is intensive ABA therapy. You must be licensed and certified in the state of michigan in order to do this with P. I think in Michigan we have a total of about 33, and about 18 of them work with autistic kids….By law we are entitled to this therapy, unfortunately it just isn’t something I am willing to do anymore. I’ve been down this road before. It cost a CRAP ton of money. It was consuming, and if it isn’t done the same way in such a precise way by EVERY person who is around P, it fails. It confuses him and the plan goes to crap. I would have to fight fight fight for services. HOURS of documentation and constant data taking on paper.

When P turns 18 our social security death benefits are gone. This is what i live off of. Preston was kicked out of 5 daycares by the time he was 4 years old maybe even 3. I have had to sacrifice working in order to care for him. I have worked for $8.00 an hour as a substitute paraeducator for as long as he started school full time. (7 years) I would work when I could. I based this on if I was able to get 4 hours or more of sleep. I didn’t work that much… lol So the point is, that when he turns 18 the benefits are gone. I have no degree although I’m close! What happens then? I need to make a plan for me too. I took a leave of absence from school. Eventually I will go back. So what do I do now? Where are we?

PLAN A: 

Well, I wait for the meeting which is Wednesday to hear if he gets approved for the 3 months of treatment. If not.. well I can’t even think about that, lets be positive… lol

I need to gut my house. It is seriously damaged from P. I intend on selling it and moving to a home that is more accommodating to us both ( in case he HAS to come home and they don’t give us permanent placement at a residential facility). I need to get a job. His treatment is costing me $1200 a month. GULP!!!! Don’t ask how I am going to manage that… I guess the job I am going to get but don’t have yet.

I am going to eventually go back to school get my degree and open a center for children with special needs. That has been my dream for a long time. That is why i invested so much of my time with the non profit that i helped start. However, that didn’t happen so i’m doing it the way I know it needs to be done.

PLAN B:

win lottery.. BIG LOTTO

PLAN C:

marry a rich nice man who will take away all of my woes….;)

That’s it, that’s my plan. sounds easy enough right? I can do it. I have the biggest support system of anyone I know. Our recent fundraisers are a testament to that. Not to mention I’m crazy. I get my way. If it’s not handed to me i’ll get my way by fighting, sweating, bleeding, crawling, whatever it takes… I’ll do it.

I’ve lost a lot of people this year and know a lot of people that have passed this year…friends, husbands, wives, uncles, dads, brothers, sisters, aunts, etc…..It makes you wonder what really matters in life. I’ve known for a long time. I learned my lesson on December 12th 2001. We all just want to be safe, happy, and healthy. That’s it. I never thought that my son would be institutionalized (UGH, I just grimaced typing that word, but I’m getting there), however he is and you know what, he’s happy. He’s safe. He has many people that love him. He is my hero. I pray so many times throughout the day that i am making the right choices for him, and the right choices for me. I also deserve happiness, safety and my health. and that’s okay. Eventually I’ll own it and so will he.

Thank you for reading, thank you for caring, thank you so much for the support. Slowly but surely, we are putting the pieces back together. Day by day, hour by hour. I also need to say something else before I go, I need to apologize if  you ask me how  P is doing and I then respond by saying he’s good and walk away or then ask about your life. It’s really tough to talk about. Whats even tougher is that I know that nobody knows what else to talk to me about. Autism has ruled my life for as long as I can remember….But for now, its not something I can talk about openly yet. (unless you want to see my snot and tears) I’m not trying to be rude, and I care IMMENSELY about my son. However, every moment right now is tough. Being around your kids, being at the beach, the birthday song, seeing his favorite foods, doing something he would love… its tough. I really am choking back emotions… so please PLEASE forgive me. I want to just stay home and mourn, but i can’t. It’s not

How did we get so lucky?

Well supporters.. we did it.. grab a coffee.. (or not, its late),I have a lot to say!

In case you haven’t heard… Preston is in Great Lakes Treatment facility. Yes, you read right! He is in treatment!!!Its such a bittersweet feeling. I miss him something awful. It’s a very mixed array of emotions that i deal with by the hour. My husband passed away when P was only 18 months old. From the minute it happened, Preston became my world. Literally. I’m feeling very lost without him. However, I know it’s for the best. I cannot thank everyone enough for reading my blog, for caring about us, for helping us, and for the emotional support. Blogging and social networking has been my lifeline. I am going to answer a few common questions about his treatment the best way that i can.

How did I get Preston placed into the facility?

It wasn’t easy and in all honesty I’m not sure I can say it was exactly one thing or another. I believe that it was the combination of the endless phone calls, proof over the years of his behaviors that were undeniably unmanageable, countless hours on the phone to any and every person that i thought could help like autism alliance of michigan, the ARC, disability network, the governors office, endless conferences, emails, and most of all dealing with medicaid and the state of michigan, including CMH. The combination of these things and the letters of recipient rights complaints, the support, and basically the state of crisis we were in. Finally it was realized that Preston really did need treatment and help.

Where is Preston placed?

This center is called Great Lakes Center for autism treatment and research. It is in Portage Michigan and they specialize in treating behaviors with autism using a type of intense therapy called “ABA” which stands for applied behavior analysis. It is the only proven approach that has helped decrease undesirable behaviors associated with autism. I have my own opinions on this treatment, but in all honesty, I’m desperate. WE were desperate!

How long will Preston be in treatment?

I have no idea. It is a month to month thing. I know one “client” of the center that was placed and discharged after 3 months. It all depends on many components. How treatment is going, homelife afterwards, and probably mostly… the dreaded funding.

Do I get to visit and how often?

Yes I can visit during the centers visiting hours but they are pretty flexible. The problem is that it is 2 1/2 hours away. 😦 But I’m doing the best i can.

What will I do when he gets home?

I have no idea, right now I still feel as though P should be placed in a permanent residential facility. ( aka group type home) This is hard to admit and I may change my mind. However, I know what is best for my son and myself and I am doing my best to accept these feelings and admit it.

Where do we go from here?

I have no idea. I have a plan… kind of. Like fixing my house and selling it. Trying my best to find a home to fit both of our needs knowing that he may possibly come back “home”. I need to get a job, finish school, deal with his treatment, deal with the grieving process that i never went through in losing Chad, going to therapy for myself, breathe, breathe,and breathe some more. I would like to do my best to not feel guilty for enjoying my life right now. You know like drinking water, a dry floor, a clean bed, enjoying times with friends and family, etc. Its way harder than i ever imagined.

So hopefully this helped answer questions. 🙂 On another note there is something very heavy on my heart and mind. The infamous fundraiser that was put on for my son and I by a total stranger and the community of caring people that surrounded us.

Everyone has issues in their lives. I’m not “special” in any way shape or form. I KNOW that others have things to deal with. Death, financial issues, children, husbands, exes, boyfriends, girlfriends, careers, etc. I’m not exactly sure why God has put people in OUR lives that have helped us with our moment of despair. But I’m grateful. I’m over the moon grateful. The volunteers, support, love… its all priceless. I CANNOT express this enough: I was not well. Neither was Preston. We were in a state of crisis and looking back on what seems like was an eternity ago, I realize just how awful it was. Like it was a surreal experience. I honestly cant believe the stories from the people in those pictures and posts. Thank you for saving us. Because you did. That’s a tough one to put out there too. Its embarrassing to admit that you are drowning. I fought for so hard for so long….alone. Hiding in our “prison walls”. It feels good to know that people care. It feels amazing the support that has literally lifted us in every way.  How did we get so lucky!????!!!?!? Thank you. Thank you to my amazing family who is having a huge garage sale next weekend and telling me to go up north and spend some moments with friends and my soul sister Kelli S. 🙂

So i sit here. It was a long and emotional weekend. Who am I kidding… lol it was a long and emotional life…..I got a ton of sincere hugs. I felt so proud to be blessed in the presence of such amazing people. The only thing missing? My son and my husband. I guess its time to move on in my life. Time for the next decade….time to have hopes for my son. I used to pray that he would talk and be placed in a general ed classroom.  Now I just pray he is safe, loved, and happy.

In the end… isn’t that all that matters for all of us?  

Life is crazy……live it….thanks to you, I’m going to give it my best shot. I love you. All of you.

PS… the recipient’s rights letters can stop now. The state keeps calling me…lol I promised I would ask our supporters to stop sending.. 😉