HOW CAN YOU HELP???

I am desperately trying to get my son treatment!!!                                                           Image

Please help me …. again……:(

Without you I cannot do this!

I’m attempting help from Dr. Phil again…………………

Please email his show at this link:

http://www.drphil.com/plugger/respond/?plugID=9164

My story is quite simple and you can copy and paste this into the comment box:

My friend is desperate to get help for her autistic son, she is being told that in order to get help she will need to give up her parental rights, this isn’t fair. She is a widowed mom to her son who is almost 14 and has extreme and aggressive behaviors that is preventing her to care for him any longer. She has plenty of documentation from her blog in addition to pictures she can provide to tell her story. Please help her, she has contacted her state senators, governor, and other organizations and seems to be getting nowhere. PLEASE help this family Doctor Phil!

 

Its that simple…..will you email them?

Or send a letter… to:

Dr. Phil show
5482 Wilshire Boulevard #1902
Los Angeles, CA 90036

T H A N K Y O U S O M U C H F O R Y O U R H E L P!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Lisa and Preston Sain

Image

 

Please share so others can help us too…….

 

 

Pins and Needles… and Autism

It has been so long since I have blogged. There are several reasons but the number one reason being that it is hard. It’s hard to convey and express such strong emotions that I feel in regards to this life that my son and I have. I could never in a gazillion years explain the pain and sadness that comes with raising a child with severe autism. There are families that can relate and I am EXTREMELY happy and blessed to be a prat of a group on facebook that allows me to speak so candidly and they understand because they go through the same challenges that we do. I wish I had this outlet years ago but better late than never. :) So to those that read this that are in the group… I love you and i thank you for the support…:) I am sorry that we know of one another through these circumstances but at least knowing we aren’t alone and we are fighting these battles together are helpful.

I remember when Preston was first diagnosed. It was terrifying. I would wait for P to go to bed at night so that I could research autism. I spent many sleepless nights looking and searching for just one sentence that would bring me some sort of hope that there was a cure for autism. I spent every dollar I had on therapies and treatments. Nothing worked. As he got older, harder, and more aggressive I became more and more depressed, tired, isolated from the world around me. I started to hide our lives. I pretended that everything was okay. I had a smile on my face and did the best i could to survive, everyday growing harder and harder. My closest friends and family had no idea the turmoil I was living in. Eventually, I wrote my first blog….the cat was out of the bag. I was out of the closet, so to speak. Extremely hard and a huge cry for help, and i got it. I had the support I needed to do what i knew I needed to do, which was get help. Whatever that meant at the time I wasn’t sure. I started my process of getting Preston into a temporary treatment facility. It took a year but i finally succeeded.

Preston has been in treatment for 10 months and 8 days today. It’s so hard.. ..”hard” and understatement. It’s terrible. He didn’t go to summer camp, he didn’t go to college, he didn’t move in with his friends, he didn’t join the military, he was put into a facility with other severe children and has been put through the ringer. He has been physically abused and at times confused and well I honestly don’t know what else because he cant tell me. The good news though… is that he appears to be doing better. He sleeps through the night, he eats a variety of foods, and he is thriving on the consistent schedule that the center provides. I am grateful and thankful for this opportunity. I thank God every day.I pray every day multiple times a day asking God to watch out for my baby. My faith is all I have, but I’ve learned its all I need.

Preston’s treatment has reached a point that it is time to start his transitional plan. With many meetings and discussions based upon data from the facility, his behaviors, my input and that of CMH it has been determined that there are two options for his “next step”. He is either coming home or going to another facility about 45 minutes from me. If he comes home there will need to be the following major things that will have to happen for him to come home, these things include:

Reinforcing the walls so he cannot break through the drywall and eat it.

Finding heavy duty furniture that he cannot pick up and throw & bolted to the floor.

Finding a way to make our vehicle “preston Proof” so he cannot break the glass nor reach me when we are driving. He tends to choke me, punch me, throw things at me, and move my shifter into another gear, and grab my steering wheel.

We need to remove all glass from the house, including the windows.

We need a high tech security system

We need locks on all the cabinets and rooms in teh house ( so every time i go from room to room I will carry keys around my neck or wrist and open the doors.

He needs a bathroom that is waterproofed so that he can shower throughout the day and not rot the floors from the splashing.

We will have to find staff that can be here 24 hours a day 7 days a week. LOL LOL LOL LOL LOL LOL LOL LOL

We need a certified BCBA. This is a person that is trained in making a personalized behavioral plan for Preston and supposedly trains the 24 hour staffing to implement tha plan. They will check in weekly to make sure the plan is being implemented. The BIG problem with this is we do not have a certified BCBA in Genesee county. They will have to hire someone from out of county to do this. $$$$$

In addition to this problem, there are only two companies that CMH uses to hire staffing for families. One of the agencies has said that they will not provide services to us. Yes, we were kicked out of a company because they know they cannot find staffing for Preston. They have stated he is too hard and even if we found someone, the pay rate would be too high. (the “workers, aides direct care staffing, or whatever you want to call them” get paid $7.50- $9.00 and hour most of them are $8.00. I don’t know anyone in their right mind that would wipe a  grown teenagers poopy butt, put their life at risk, and get hit, bitten, and deal with such intense situations on a daily basis. However, as you are reading this and know someone please feel free to contact me… I may have a job for them!!

 So those are SOME things that must happen for Preston to come home. Here is what need to happen for him to go to the new place:

They need to continue the treatment plan he has at the current facility and provide a BCBA to oversee his program and treatment.

That’s it. :)

PROBLEM: They do not have a BCBA and they do not do this type of therapy.

UUUMMMMMM Okay.. now what?

I have no flipping idea. I put in my official request for the new facility 14 days ago today. They have 14 days to respond to the initial request for placing him in the new facility. I am on pins and needles. I am shaking, sweating, trying to go about my day and freaking out ever time the phone rings. Maybe the notice will come in the mail. I don’t know.

SO that’s the update on Preston. I want him moved to the new place. Mostly because it seems to fit his needs more, they have a pool that they go to on site at least twice daily but usually more. He can have a tv, his kindle,and a gym with a sensory swing. It is big enough for him to take his bike too.. :) They have a playscape and a sandbox that he is free to go and play when ever he wants to ( during his “freetime” of course) They train in areas that are more realistic like doing his laundry, doing dishes, taking out the trash. Basically daily living skills that he needs. I’m sure its not perfect but compared to where he is now, he will feel like he went to a heavenly resort. SO please pray that Preston gets placed at the center in Caro. The most important thing with him going there is that when he starts school, one of his workers from his home will go to school with him. He will finally have a one on one aide!!!! Something he has needed for years! :) Then the most EXCITING thing is that i can pick him up and go into the community, maybe go to eat, go to the beach, go to a park, go shopping, etc. They will send staff with us if I need the support. He can also come home for the day or weekend!!!!!! OH EMM GEE!!!!! To have my son come home now and then is a dream come true!!!! They have a ton of options.. staff can transport back and forth, they can stay or leave depending on my need for supports, or I can pick him up bring him home for a while and take him back if he needs to. This is the most important part to my selfish self. I can’t help it. I miss my son. Its ridiculous that i miss certain things like bike rides at 3:00 am, washing his hair, clipping his nails. I miss his irritating happy noises, I miss the joy I see while he plays in water non stop. I miss baby einstein constantly playing and me making animal noises and crawling on the floor to make him happy. I don’t know how I can miss these things but I do. It’s how I had to parent, and although not ideal nor typical, it was OUR way. I miss parenting him.

Since Preston has been gone my life has changed tremendously. I actually feel human. I eat, drink, sleep. Not only do i do these things whenever I want, but I do them in a clean house and bed. A BED!!!! A real bed with clean sheets every night… lots of pillows and candles going. I often sit in silence. Something I never had the opportunity to do before. Yesterday was tough. I mowed the yard then I sat for a break. I actually sat in my swing in the front yard and drank my tea and realized that i have had that swing for many years and even though the cushion is gone I sat there for the first time in my front yard. I have lived here for 13 years and never had that opportunity. I even have a boyfriend now. It’s wonderful… to have affection and someone that cares and to keep me company. It’s a real relationship and it feels great but a part of me will always be missing. He has two children a boy and a girl who are 11 and 15. It’s tough to spend time with them and I have guilt and choke back tears when i am with them because I feel guilty for not being with my own child. All normal feelings and I just have to push through them. This will never change. I have to put my big girl panties on and suck it up.

Life is good….a clean house, a boyfriend, and my health. I even started school again. I’m in the “focus mode”….trying to meet my goals. Trying to do what is best for my son and for myself. It’s not easy something we can all relate to. Life isn’t easy and if i didn’t have autism and Preston I wouldn’t be so grateful for what I have. If I had not have lost my husband i would not be as far as I am in accepting Preston’s autism and doing the inevitable, placing him into residential care. I am happy that I am making these moves for him because eventually it would happen. It feels good knowing I got through a MAJOR “HUMP” and milestone that many families I know will eventually face. I’m proud to be so strong in doing what is best for my son.

So with that being said… I hope you understand where we are at. Please pray for Preston to get whatever it is that he needs. I’m not exactly 100% sure if that is coming home or going to the facility in Caro, I am leaving that one to God….so please pray. I will continue to sit here on pins and needles waiting for the call. Or the mail….the mail comes in two hours. Not that i’m keeping track of time ;)

Thank you for supporting me. I couldn’t have done this without you. I almost didn’t make it. We almost didnt make it. I am glad for my special friendship with Kelli, it opened my eyes and I cannot wait to continue fighting for families, finishing school and helping the families that so desperately need support!!!! My friends, my family, my strangers that read and support….. God bless you… and thank you from the bottom of my broken still in repaired but still beating heart!

Ill keep you posted…..:)

Sincerely,

The InSain Asylum xoxo

 

Image

 

Drugs, Love, Mental health, and a box of chocolates

I miss my son. He has been placed in a temporary residential treatment facility that specializes in children with severe autism. They use ABA therapy as their main approach in improving behaviors. Keep reading, I won’t bore you with the acronyms that you don’t understand. Parents who have special needs children deserve a college degree in the memorization of the acronym’s and their meanings… we know about a gazillion.. lol Anyways I made it through the holidays. I have been receiving therapy since my son, Preston was placed into the facility in August. He’s been there for almost 5 months. It’s the hardest thing….remember when your baby was born and you loved every new day.. the strides and milestones that they hit? Imagine being away for 5 months.. that is the only “vision” I can give you to describe how much I miss him. I’m missing certain milestones in his world. It’s tough, but it’s for the best.

I am enjoying my new life and I have finally become somewhat accustomed to it. Although today was a tough day. Sundays usually are… “family day”. Ugh….I despise the Sundays….but I managed with a few tears. I enjoy the freedoms I haven’t had in the past but they come with much guilt. I have a hard time doing certain things and especially food related. My son loves two things in this world more than anything… food and water. Obviously I can’t escape those things so everyday I am challenged to not cry over taking a pleasurable hot shower, or enjoying our favorite food… salad. It may seem absurd but it feels like my child is in prison and I am free to enjoy life and it isn’t a good feeling. It’s odd that I have to work on not feeling guilty over everyday “pleasures”, but I do. Some days I struggle more than others. I still feel as though P is thriving in his new environment but I get more and more anxious every day for the next phase, whatever that may be. Here is where we are:

Nothing has changed since my last post 20 days ago. However, I have been doing some research and I am UTTERLY surprised at how many families have experienced such similar circumstances. I’m not the only parent who has been told by professionals that an “option” in order for our children to get help is to relinquish parental rights so that our children can receive adequate medical and psychological care. It sickens me. However, it also feeds my fire of fury to keep trying to find a solution, not just for Preston but for other families and children with special needs including but not limited to autism. My latest “Bible” has been the State of Michigan Department of Human services licensing guide with the Bureau of children and adult licensing. Bet you have never read that for pleasure have you? lol I remember when I studied and read and researched the medicaid manual provider for weeks trying to find  a way to get medicaid to pay for the treatment facility. Phew.. I did it when many people said I wouldn’t, I did. I WILL find yet another loophole. I cannot take all the credit, as much as I feel as though the department of Community Mental Health has been an enemy they are also my best friend. “They” are helping me in this area. Guess who else is helping… YOU yes, you. Strangers and friends alike are constantly messaging, emailing, texting, etc. Not too long ago someone posted about an author named Toni Hoy. She has written about her experiences with her adopted children and although the circumstances are obviously different, they are also eerily similiar. I thank GOD for the internet and my ability to talk to other families. I’m in the process of reading her book called “Second Time Foster Child”. It’s not an easy read. It’s a story that is all too familiar. However, I’m pushing myself to read in hopes that I hear she has a happy ending and that I find some “secret clues” in getting help for my son.

What I have painfully learned about this whole scenario is that it all comes down to money. 

My child’s life is about a bunch of political and bureaucratic BS….

It really truly stinks, but life is a box of chocolates you never know what you’re going to get, Forrest Gump taught the world this. ( by the way did you all know that Forrest Gump was based upon a cognitively impaired person with autism traits? Hmmm imagine that….) So as I continue to open our chocolates daily and deal with the nasty ones and divulge in the good days when I get the yummy ones, I will continue my quest. I’ll do it for Preston, for myself, for my friend Kelli. For my friend Amy, for my many friends that I cannot list here because my list of parents who are doing their best in dealing and coping with the tragedy of autism is way too long.

I have been given a wonderful gift that came with excruciating hard days of work, blood, sweat, tears, commitment, and love. I have been promised that P will not leave the facility without proper staffing. I know that sounds cliche….However I believe it to be true. It is my job as his parent to make sure that laws, regulations, statutes, and codes are enforced and implemented in order for Preston to thrive and live a happy, safe, and as productive as he can be, life. He is after all a citizen of the United States, of the human race. He is not in prison being punished for a crime. When I have results and when I know more, I will share with you my fellow comrades, friends, and supporters. :) I love you. Now for some really good personal news:

I am happy to say that my therapist and I both agreed that I am not crazy and that I have these true raw emotions for a reason. I suffer from that of a soldier who has been at war. I suffer from Post traumatic stress disorder, depression, and possibly a touch of A.D. D. For years I have been on and off of medications trying to find something that works. I am excited to state that we found medications that are helping me to feel stable. Its a combination of not having the stress of Preston 24/7 and the therapy and medications. I will only see my therapist on a “need to” basis. No more threats of me being committed to the psych ward. :) YAY! I also started dating again. :) Its hard to describe that. It’s been a long road and I have had a handful of really bad relationships because of my vulnerable state. However, I am trying and it feels great! I keep in touch with my friend Kelli. of course I can never say too much in such a public forum, but she appreciates all of the support. Please continue to write her and do whatever you can to help.

      Another huge issue in our life was our home. It was filled with things that i am not going to list. It was like a war happened in those walls. My friends and family helped me to get the house back in livable conditions. This may seem like just a couple of sentences and you may be thinking, “well that’s nice”. It seriously took a small village to make the house a home again. Almost three months of working 2-4 days a week on the house for 3-7 hours a day. We conquered what I thought could never be possible. I believe God works in many ways. I am SO EXTREMELY grateful for having my house back to living conditions, but in all honesty I’m more grateful for the time spent with my family and friends. It was extremely therapeutic for me. When they first started coming to my house I was so ashamed. I cried daily. My head swirled with so many emotions. I was dealing with Preston, the loss of everything I had ever known. I felt alone, isolated, confused, and deeply depressed. I have not been used to the “outside world” with the exception of a small circle of friends. I bravely painted a picture of who I wanted to be and tried to depict that for them. To expose myself to my family for the first time in years was hard. They had no idea exactly how disheveled my life had become. I feel as though I deserve an Academy award for my role over the past decade. Anyways it was a grueling process, but nonetheless, a gravely needed process. It helped me heal. It helped me to feel human again. It saved my life. Literally. I wasn’t sure I would pull through….I was crying excessively day in and day out. I couldn’t see any light at the end. I was forced to make human contact on a weekly basis. I had one day that I remember very vividly. I was just so upset by everything. My frustration boiled up like a pot of water ready to spew. I had had enough. My family left that evening and I lost my mind, I wanted to destroy my home all over again. I wanted to kick the walls, rip the cupboards off, tear the lighting fixtures, and take a hammer to anything I could. Suddenly my rage turned and I knew that I couldn’t let my family and friends down, all the hard work they had done. I had to stay calm. I grabbed my purse and I ran out of my house and jumped in my car before I did the damage that I desperately wanted to do. I went to a best friends house and as I stormed into her house, I looked like alice cooper.. mascara running down my face, I was in my polka dot pajamas, a blue tank top wearing no bra and a leopard print robe with no shoes and just my socks. My girlfriend listened as I wallowed in my blubberish state. She is one of my best friends and had never seen me like that. She told me to take a xanax and I did and I calmed down. It was the first time that I felt like I let her see that side of me. It made me realize that it is okay to be the crazy lady now and then. I have every right,along with many other families dealing with such hardships. As long as I don’t give up and as long as i stay true to myself, its okay. It’s also taken me the longest time to realize that I’m not superwoman. I thought I could do everything myself over the past 12 years. I can’t and you know what… the strongest bravest people in this world know when to ask for help. I have vowed to myself, and to my friends and family that i would do so. I intend to keep that promise. It feels good to be out of the closet and to have such wonderful unbiased love from my close ones.

If you are reading this and think you are at the brink…please….do not be a super hero. You aren’t alone and the strongest people reach out for help.Also if you need medication, that is okay too. We aren’t all equipped with emotions of steel that can handle such stressful times. So if you have meds, take them if you need to.  If I can do it so can you. Hang in there…. I hope tomorrow is a yummy chocolate day for you. (I’m done with my public service announcement for prescriptions and mental health) lol

Huge thanks for reading, for caring….A huge shout out of gratitude for those who helped on my house. You know who you are. :) God Bless you all.

Lisa and Preston

Merry Christmas…and blah blah blah….

Hi all. So here it is, the most dreaded time of year for me. memories flood of the dreadful phone call i received that my husband died in a car accident on his way to work. I’m not going to bore you with the story….again… but I just have this insatiable need to convey that it happened and that it is hard, and that i miss him. There i said it. ;) Moving on to stories of the living….

My “baby”, Preston… He’s doing okay. It has been to date the toughest challenge I have faced in my life. He’s doing okay. He thrives in some areas, in others he doesn’t. Mostly i am concerned about his emotional state, and his safety. He keeps getting bit. Not tiny bites but huge horrible painful bites. Its very disturbing. It’s extremely and emotionally excruciatingly hard to bare. I am unable to protect him. It flat out sucks. With that being said…I appreciate not being abused by him. Imagine that scenario… Sad for him, yet somewhat happy for me that for the past 4 months i have not been abused by my child or feared for my life. Yet devastated over his possible lack of happiness, security, and safety. Its a hard place to be in my head and words could never convey to you the pain I face on a daily basis. I push away the thoughts and do my best to let my faith in God help me know this is the right thing… for now.

In a nutshell this is where we are at. I decided to request a permanent facility stay for Preston (group home like setting) this is the St Louis center. I am told it wont happen but am waiting for the official denial letter so that i can appeal the decision and go from there. I may or may not know more about this situation this Wednesday as I have a big meeting to discuss where we are with the outcome from community mental health. I cannot afford to pay for this, it would cost approximately $60,000 on the low end. Possibly more if he required a one on one aide on a daily basis. Ultimately if I cannot get financial help from the state to pay for this, Preston is coming home. Once he turns 18 medicaid will cover a group home. So I have 4 1/2 years to try my best to keep us both alive until he can be placed in the group home.

I can not give up my rights as a parent. Preston would be placed in foster homes and probably shifted back and forth between foster homes due to his severity and the inability of others to care for him. He could even be hospitilized. Eventually if he is placed in a permanent facility, then I would have legally abandoned him which is a felony in the state of Michigan and end up in jail. I would be placed on the central registry list of child abuse/ neglect and never be able to work with kids in the academic field. i would probably go to jail for a while and accrue a hefty bill in attorney fees while i tried to have the felony expunged from my record. In all honesty, if I knew there was a family that could care for him, love him, and keep him safe, I would go to jail. However, that is not a reasonable expectation. So Preston will probably come home.

I am trying my best to prepare for this scenario. I am in the process of trying to move, sell my house, etc so that i can find a house closer to my mom who helps me so much with him. i need a home that is more suitable in meeting his needs. For example privacy…so my neighbors don’t hate me anymore.  I’m trying my best to get back into school so i can finish my degree. I am 9 classes away from two bachelors degrees. However, it isn’t easy. I still deal with loads of paperwork and stress with p being in the treatment facility. i struggle emotionally with trying to stay positive. My family and friends have been a HUGE help in this area.

I have done more over the past 4 months then I have done in the past decade combined. I sleep, eat, shower, like a normal human. I love that part….its a freedom I have not had in 13 years. I will miss that part of my life when/if p comes home. However, as a mom… I am almost elated that he may come home. I miss my baby.

I am sad that Christmas is here again…..I’ll be happy to see it pass….however, I have had the best 4 months and hardest four months of my life. i am not stressed 24/7. My chest pains have stopped…It feels great. I suppose its the calm before the storm.

I hope you all have a very Merry Christmas….Ill try and keep you posted. I need to thank you all for the support, for caring…for loving us. My life has not been easy ( I know that nobody’s is) but ironically through this insanity i feel so blessed. I have SO MANY PEOPLE that love us. That are there for me when I need them. I am a lucky girl….I feel happy and content right now…even with the huge void in my life of my son. I am trying to stay calm and carry on… its all I can do… baby steps and one day at a time…I have truly healed over the  past four months. I’m not sure if we will make it when/if he comes home. But I am going to give it everything I have left in me. Its my only choice.

Remember my friend Kelli….she felt she had no other option. I pray for her daily and miss her immensely. I pray for her children mostly. I also thank her for her actions, because it showed me I am not alone. She has shown me that the options I do have (life or death) I want to live and keep fighting. If you would like to write Kelli, send money to her comisarry account,or donate to her legal defense, any and everything is greatly appreciated. Kelli helped me and now I want to help her… thank you, and you can visit her page here: https://www.facebook.com/pages/Kelli-Stapleton-The-Status-Woe/441514065886958?directed_target_id=0 Before Preston went into treatment, I was one meltdown away from driving into the train tracks…Ive had much needed time and mostly peace to prepare for the storm… Im doing my best and I couldn’t have done it without you all. I love you and I thank you! Happy New Year and count your blessings…:) You’re alive….

20131209-171513.jpg

20131209-171529.jpg

20131209-171544.jpg

20131209-171557.jpg

20131209-171618.jpg

20131209-171729.jpg

Today I talked to a Mother who found me by googling autism services in Davison Michigan. It was hard to talk to her. She wanted to know what services were available to her 9 year old daughter who has autism. They just moved to the area and she wasn’t familiar with what our county had to offer. It was really hard to be positive. In a way,  wish i wouldn’t have answered. She was an intelligent woman and she seemed less stressed after i talked to her. I guess that’s good. I have talked to many families, I have given a book or twoon advice, I have cheered moms, dads, cousins, siblings, grandparents, etc of children on the spectrum up. I have a good friend who teases me because I’m “that girl”, the one who builds em up, whether its self esteem or encouragement needed, I’m the “build you up buttercup” girl. lol I get on my own nerves at times, but I cant help it. I’m THAT girl. I enjoy making people happy. Too bad I can’t build me you up buttercup myself. 

 I have been extremely busy with my life. My home of 12 years is being remodeled and getting ready to go up for sale. It makes me sad. I’m not sure where I’m going. Probably towards Lansing. I hate Swarts creek but that’s the direction of the home that I want P to go into. Today I had to deal with someone that really disturbed me and hurt me emotionally. They didn’t mean to, there intent was to say they understood, but they don’t. Talking about P, I am EXTREMELY sensitive. I miss him more than I ever thought I would. I’m worried constantly. Anyways this person brought up lobotomy. Yep. The “L” word. The thought of it is so inhumane. I can’t imagine that happening. He brought up, abuse, rape, and all kinds of mistreatment of children and adults with special needs. I cried and he just kept talking. It hurt. As if I don’t think of this everyday. The thoughts of these things ring in my ear nonstop like my “reality voice”, my voice of “reason”, she constantly annoys the shit out of me. “Lisa WHO could send their child away”, ” Lisa who in their right mind would send a child to be in the hands of Catholic priests”, “Lisa he could be harmed and can’t tell you, raped, mistreated, abused, emotionally traumatized, etc”. I want to slap her sometimes, thsi so called voice of reason, then I have the other voice who says to me, “You CANT do this any longer, he will kill you, or worse you kill him or each other”, ” you deserve to be happy”, “you deserve to be safe”, “You have suffered long enough” “you gave it your all”. That voice annoys me too. However, even more annoying than those two voices combined is the voice of a stranger who doesn’t have a clue. So unless you were widowed at the age of 25, left to deal with a  child who smears shit, eats non food items, abuses you daily, destroys your home and any other property they wish, and cannot talk whom you love more than life itself; PLEASE do me a favor. Do not say you understand, and do not tell me about the gloom and doom and russian roulette I am “playing” by choosing to place my child into a residential facility fo rthe handicapped, please. I have enough voices and opinions. Unless you have something positive to say, do not say anything, didn’t your perfect mother teach you that? 

I went to Social Security today too. That’s where the day changed. The woman helping me, understood my situation. She knew what ABA was, she knew about Great Lakes, She knew about my friend Kelli. I told her how Kelli is the only person that understood my life. She said something that made me relax and pack away my “gone postal revolver”…;) (Im kidding.. Im kidding Im kidding) She said to me, “I don’t understand, but I have children, I’m a mom and they are your babies, and i’m sorry, I can’t imagine”. She had tears in her eyes and it was all she could do to not cry. I said thank you. That simple…. that simple act of kindness and her being sympathetic versus judgmental, THAT’S what you do to help a parent of a special needs child. I left in a great mood. I loved that she knew what aba was. I have Kelli Stapleton to thank once again. Thsi stranger must have googled aba therapy, they looked up the center for autism, she read the People magazine article. She read and she didn’t judge. She sympathized. Thank you lady at the SS office. :) 

On another note I defended Kelli yet again today, and I will until i am no longer on this universe. People, you just don’t understand. That’s okay, but don’t throw stones and/or judgement either. Not in your job title. 

So I’m busy building up buttercup, I’m busy trying to make things right for P, I’m in the middle of a remodel, half living with friends, whats left of my home, and in a campground ( thanks to a VERY generous friend) :) I’m taking baby steps still and I’m treading lightly. One little set back brings tears to my eyes and makes me go into a rage. So please, have patience….I’m trying…

On a final note, I want to thank my friends and family that are working their asses off helping me to get my life together. They are literally working themselves into the ground in every way to help us. I appreciate it so much. Words cannot convey my gratitude for everything over the past 6 months and longer.. the fundraiser, the help, my friends, my family… God. The prayers….thank you. Keep em coming….we aren’t out of the woods and in phase 1 of our next war. Love you all…. :)

Lisa and Preston

(sorry no time to correct typo’s.. I’m at a restaurant taking up a booth at dinner time…gotta go!) 

Deep Breaths………Big Prayers…..

I am so lucky to have the support of so many people and I want to start off by saying thank you. Thanks for listening, reading, caring, sharing, for sympathizing with our situation, and for those who do/can empathize. I am sorry I have not blogged in a while. It’s been a debate that swirls in my head almost daily. It’s a great outlet and I feel that I’ve “sucked many of you” into our lives for lack of better words. So bare with me. My thoughts are scattered. Stress tends to kick my A.D.D. into high gear. Despite the advice of several professionals I am going to ignore them and I am blogging.

First I need to talk about my friend Kelli Stapleton I support her. Period. I will not speak about anything I know or don’t know. I read the articles now and then and I don’t know anymore than anyone else. I understand that the news is not always the best way to get the facts, but it’s all we have. In my opinion, I know in my heart where my dear friend was, I know because i’ve been there. More than once.  I will leave it at that. If you would like to help her and her family there are two sites that you may make contributions to. One is through their church to continue to help with their autistic daughter’s treatment. That site is:

                                                       http://elberta-alert.org/please-help-issy-stapleton/

There is also a way to help Kelli and raise money for her legal defense fees. That site is:

                                                  http://www.youcaring.com/other/friends-of-kelli-stapleton/90021

Both sites are legit and all funds donated will go towards the causes that they are meant for. If you can spare an extra dollar or million, any and all is deeply appreciated. Thank you. :)

So On to my beautiful son Preston. How is he? Where are we at? Whats going on? To be quite blunt….it’s been stressful. Preston has been through the ringer. Hospital visits, Er visits, Doctor visits, getting physically harmed, etc. Emotionally, it’s hard to tell where he is at. He doesn’t talk. It’s like a newborn. You just go by what you see. The nonverbal cues and physical attributes of his body and face. It’s what I go by. The staff lets me know when something “bad” happens. However, I don’t get daily calls from them. We tried facetiming but it only brought stress for both P and I, so we stopped. Emotionally Im a complete wreck. I knew this would be hard, but not this hard. It’s beyond words gut wrenching and I live life almost daily in constant turmoil. Worried, anxious, sad, and angry. I can only pray i eventually have peace someday. Maybe my mom was right after all these years, that it is harder on me than him. I hope she’s right, but mom’s are always right, correct? ;) I’m going to place a bet on my mom…:)

So the good news.. ready? PRESTON IS THRIVING! Huh? What willard? Yep.. thriving, doing well, dramatic decreases in behaviors. So does that mean I wasn’t strict enough? Didn’t follow behavior plans correctly? I didn’t get “professional advise” “professional” help? NO, NO it does not. I was strict. I spanked Preston, I used timeouts, I used ABA, I tried COUNTLESS methods suggested by professionals. These professionals do not live with autism 24/7. I can handle 5 autistic kids for 4-8 hours a day too. I can be consistent, and stick to plans. Preston doesn’t trust a stranger. If they tell him to do something he may push their buttons to see if they “cave”. Eventually he realizes that they wont. He behaves and doesn’t ALWAYS use aggression to get what he wants, especially when the rules are black and white. With me its a whole different planet. He trusts me. He will hit me, bite me, destroy our home, and literally put me in …ugh tough to admit, but in life threatening situations. He knows I’ll give in out of exhaustion, emotional ties, and at the end of the day no matter what he does to me, I’m going to kiss him love him and never bite him back. That’s called abuse. I won’t lie about my next shameful statements. I have hit P, I have bit him back when he was younger, I have yelled at him and threatened him out of pure frustration and exhaustion. Caregivers have done the same. Why is he behaving at the treatment facility?

Because of several components. He doesn’t “trust” them the way he trusts me. They are consistent. They have a safe environment. Non breakable furniture, walls, tv stations etc. No windows that are accessible. They are in lockdown. He has minimal space that he is allowed. He cannot get a drink of water freely. EVERYTHING is locked. I do not have the luxury to transform my home into an autism friendly environment and make the modifications. What i do know is that he is thriving in this type of environment.  That’s the great news.

Which brings me to our next step. Making the choice to come home or TRY to get permanent placement in a residential facility. I am going to admit something that is really hard to admit.

I cannot do it anymore. period. 

I have dedicated my life to making sure health forms are filed, he is up to date on anything and everything, making sure he gets proper education, staffing, plans, therapy etc. I’m done. It wore me down. It didn’t work. I was suicidal, depressed, and suffer from PTSD. I’m broke, in every way you can imagine. I’m damaged. If I’m not okay, he won’t be okay. I’m his Mom and his Dad. We are tired. I’m going to try and put Preston in a residential facility. Let me explain something to you before I get into that. Even if Preston came home, we DO NOT HAVE staff in our area that can help with Preston. We tried. Yes, his behaviors are better, but i have to train individuals who would get paid crap for money. It’s a tough job and $8 an hour doesnt cut it. So even IF I WERE emotionally and physically up for the challenge, I am alone. I would have to fight for the maximum services we would need to get by and that’s an understatement. Why not move to a place where services are better? Well, good question… but I’m not guaranteed anything and at the end of the day, don’t I deserve to finish my degree, work, and try and rebuild my life? I’ve been alone for 12 years. I kind of miss having a man hold me, support me in choices through good and bad. I want to work and follow my dreams. I’m not getting any younger, but there is still time, I hope. However, let’s dance with the idea of me moving “somewhere” (in this perfect land of autism filled professionals that know what they are doing and help) and he gets better services than where we live. What happens of I die in a car accident? Not very likely right? Well it happens. It’s a very real reality to me. I actually think i’ll die of a heart attack. Anyways….if i die what happens to Preston then? I just had my tubes tied, there will be no other siblings to care for him, no nieces no nephews… no aunts or uncles that can or SHOULD have that burden. Then what happens? Aren’t I smart to secure his future the best way that I can now? Establish a secure and stable environment for him now? The answer is yes. In my heart and my gut and as Oprah says.. “aha moment”, yes.

So I am in the process of looking at the TWO homes in our state that will take Preston. Problem:

State of Michigan will only “accept” his medicaid if he is a client of Department of Human Services or DHS. How does that happen? He is a foster child. My choices to get medicaid to pay are simple:

1- I refuse to pick him up from where he is now and abandon him which is a federal offense.

2- I give up parental rights. Which means I have no say in his care, or where he is placed, or make sure he is ok and even worse than that on a personal level, I never get to see him again.

How do you like those apples? Hold on, I can do private pay and the cheapest of the TWO facilities that I can POSSIBLY choose from  will only cost me $126,608 per year. UUUMMMM Unless I become President, I’m not sure I can actually afford that. (Lisa inSain for president please) ;)

I expect to pay for my child’s care, its like sending your typical child to college. One difference, you have time to do this, there are scholarships, etc. I didn’t ask for this. I know others aren’t responsible for my child either, but it’s not fair, and that’s a fair statement.

So for now, i’m remodeling my home so I can sell it and buy a cheaper home.  I will live in a campground thanks to a good friend until I get the house done. I’m not sure what the future holds, I’m back to the books. researching laws, calling on God, the president, the financially fat owners of these homes…..begging pleading for them to help save us. He can’t come home to me.  I think we all know why. Don’t make me say it.

Keep us in your prayers. I love you all. Something has to change, I’m working on it.

Lisa and Preston

Clueless at the inSain Asylum

                                                                                                                  1413

We mourn

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

Dr: Why are you crying so hard?

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

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

Me: I am not dependent on drugs.

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

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

Dr: You do not take drugs of any kind?

Me: no.

Dr: whats in your purse?

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

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

Me: I dont have a bf.

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

Me: I do not live with anyone except my son

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here is a support page on facebook:

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

Thank you.

 

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)

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.. ;)

 

 

Trust no one, suspect everyone

Well supporters of the insain asylum, I do believe they are getting the recipient rights complaints. Or maybe they heard my message loud and clear the other day. Let me start this post by stating VERY CLEARLY that I am completely unclear of our situation. I am confused and frustrated with what is going on and I am not sure if I should even be blogging anymore.

However, I can’t stop. It’s my only outlet. Not only that but have you ever started something and feel compelled to finish. To me this is a story that I’ve sucked everyone into and I wont stop until I can write the end, good or not. Its life. Its our life. Its truth. Its all I have.

So Yesterday we go for our normal med review, it goes well. The one thing I can say right now is that his new medication is working. For now… I am pretty pleased with that. However, our “normal” is not good. Even on a good day, we struggle. I am tired. I’m at the end of my rope. I can not keep up on anything in our life. Laundry, cleaning, etc. It’s a nonstop affair. I know I know… it is for everyone. But you don’t understand. I mean I am CONSTANTLY washing bedding and soiled clothes. Rarely have all of the chores been done. I don’t have the extra help to mow the yard. Make dinner lunch etc. Its tough and I am quite frankly, sick of it. Emotionally and physically beat down. I have expressed this many times but this last time when I called out of desperation I expressed that sometimes I wished we were dead. Yet sometimes I’m scared because I’m afraid P may kill me or me him. Its that bad.

I suppose “they” listened this time. Maybe its the recipient rights complaints. Either way… I was told that CPS is probably going to be called by someone at the state level. At first i was shocked and laughed. Then I got angry, then I really panicked.

After sitting here all night thinking of the scenario i realized that I don’t care. (yet, of course I do) It will go one way or the other. On one hand this could work out to our benefit, if Preston is taken out of my care even temporary guardianship is gone. Then medicaid pays for treatment. Yay.. winning right? Maybe. But not really. The other side of this is the trauma induced when he gets put into temporary foster care. He wont do well. Whoever has him wont keep him long. I am not guaranteed where he will end up or if he will even get treatment.

****sigh**** maybe this was a sort of threat. Maybe its part of the “game”. Maybe its that serious and I am naive to it all.

I’m not sure. But I am sure of one thing. I don’t trust anyone anymore. I may get media involved. Its time. Now if I can find the time. Ill keep you all posted. Who knows what today will bring. We may get some company.

Carry on carry on.