Everybody hurts……..

Today marks exactly 2 years that Preston has been into treatment. He had his 13th birthday at home & it was so emotional, knowing he would be leaving very soon.  The thought of that birthday brings me to tears…. it was awful.

Preston is now 15 and he was placed into a facility for autism in Kalamazoo. After a year, he was placed into another facility because his behaviors had dramatically decreased and he was being abused by other clients. It was time to go. Now he is in a facility in Grand Rapids that is amazing. He has made such huge strides….He is able to go on community outings as often as possible. At least 2 a week. Prior to being placed in GR, he had never left the other facility for A WHOLE YEAR!!!!! (except for medical appointments). His aggression is almost minimal, his outbursts, rage, and meltdowns are rare. He no longer has “destruction of property” reports, fecal smearing is almost non existent, and his PICA episodes are also almost non existent.

What does that mean? Well for starters it means I was able to take him on vacation for the first time in about 5 years. I was able to have an overnight visit for the first time in two years. I was nervous, excited, and scared. Turns out I had ZERO worries. He LOVED going on vacation. I rented a little cabin at a campground and it had a hot tub that he pretty much stayed in the whole time. The child loves water. He ate whatever we did, in the past I would have to have a menu just for him. It was magical. It was like a miracle. I cried both nights once he was tucked in. I cried because it felt good. For the first time in my son’s life, I felt like a “real” mom. I wasn’t his dr, therapist, teacher, or any type of specialist. I was his mom. We ate breakfast, lunch, and dinner together for the first time in his life. We loved and loved and gave more love. I received affection from him like I had never had before. It was if he were saying to me, “mom I love you and thank you for bringing me here”.

The wonderful trip was truly a blessing. I was able to pay for the trip with funds from his trust fund that were raised by the fundraiser in our honor. So for those of you who helped to do that, contributed, worked, volunteered, donated, etc. Thank you. Thank you for allowing us to have LITERALLY, the best days of my life. Two whole days of bliss and love. I cherished snuggling with my peanut. Touching him, kissing him, smelling him….you get the point, right? I mean just showering him and putting clean pajamas on him and tucking him in with a smile on his face and knowing I could see him the second I woke up was magical… and sad.

It was sad because I didn’t want it to end. However, I knew it was going to. It has been a month since our excursion. Since then P has, for the first time in his life expressed that he misses/wants me. The facility has called and said that he would cry and out of nowhere be sad and sobbing real tears. he would grab his PECS book and point to the picture of me. He would sign “want mom”…………

                                                                                                              GUT WRENCHINGstab heart

So where do I go from there? I don’t know. the next time I see him I explain why he isn’t home. How do I do that? “I’m sorry son, but because of your brain disorder, you tend to beat the shit out of me & I’m scared of you. Even though you were a good boy when we went on vacation… I’m still scared of you”….. I mean really how would I say this? I tell him I love him but he can’t come home because he is growing up and he needs to learn do be independant. i tell him everyone grows up and moves away from their mom. I tell him I’m sorry but I will be there for him until I can’t anymore because one day i will die and I won’t be there. Drastic, yes…. but the truth. Preston likes the truth and he is a very literal person. So I just state the truth with as much love as I can as my lip quivers and my eyes swell with tears that I fight off with all I can muster, yet they come and they fall down my cheeks. I tell him I cry because i miss him too, but we will both be okay. It’s a very “F”ed up situation. I miss my son, I miss being his caregiver, therapist, dr, specialist, teacher, etc. I know he is thriving and I am EXTREMELY grateful for our current situation. I tell myself all the time that everyone goes through this. Kids leave for college, boarding school, to get married, etc. It’s just a different kind of leaving the nest. One that i am still struggling to accept. Tough love is no joke. I am doing the best that I can in a very “different scenario”. I am so proud of my guy….. He is the reason I am still alive and doing my best to have a “different” type of happy ending.

crying boy

 

My next step for Preston is to check out a “step down program”. Which means, a place that isn’t as restrictive of an environment. A house in a regular residential neighborhood with real windows, doors, yard, bathroom, etc. He will have 24/7 staffing as he does now. I am hoping that I choose; and mostly find a place to meet his needs. Once again I am scared and nervous. If this works out… IF…. then we will have had total success and he will either

A- come home

or

B- go to a group home

I’m shooting for option B, not because it’s what I want, but because it is what he needs. He is 15 and we have already ripped that band aid off a few times…. we got over the “big hill” already, why do it again? He may go within the next 6 months or so and then he will be 16, give it a year in the next facility and he will be almost 17. Legally he can be in a group home around 17 1/2 years of age. So why put both of us through the emotional trauma again?

So that is my plan. It’s our plan…. for his needs and for his well being. I suppose for ours. I mean its no secret how clinically depressed & suicidal I was… TY Dr. Phil… ;) So I suppose it is okay to say i can’t handle him anymore and I am doing this for both of us. I need to know it doesn’t make me weak or a bad mom. My heart breaks for so many people that are/were in our same scenario. Many do not have our “pending happy but different ending”. I have friends that are struggling as I type. They are fighting the fight

every

single

day.

They hurt, struggle cry, and feel alone. I can only pray and talk to them. I can let them know that there is a way. It’s not easy, but it’s an option and alternative to the latter…. Knowing this, I need to remember how grateful & blessed I am to have had so many things…. the help, the placement, the new lease on life, support, etc. To those of you that read this and struggle with extreme and severe autism, PLEASE keep fighting the fight and don’t give up. You are all warriors and eventually you CAN have a life again outside of your personal prison. It is possible to be happy again and allow your child to be in the care of others. It isn’t easy, but it’s an option. You just need to keep fighting to find it!

So here we go onto the next chapter of our “different” journey. Thank you for listening and supporting as always.

I need to carry on and keep carrying on. Day by day…. :) I am grateful and thankful for life, and I am still in pursuit of Happiness, health, and safety. I’m getting close…..for both of us :)

Preston and I summer 2014 @ treatment facility

Preston and I summer 2014 @ treatment facility

 

I like checking in like Joe Schmo

On July 29th 2013, my world changed, it possibly began…….again. Preston my son with severe autism was placed into a residential treatment facility for children with severe and aggressive autism. I was relieved, scared, and emotionally and physically depleted. Autism had drained my soul to the darkest of places. I felt alone, empty, numb, and quite honestly, I was over our life that had slowly crept up into the region of Hell.

Fast forward to March 11th 2015— 20 months and 10 days……

I just got back from a vacation. A vacation mostly free from worries on whether or not my son was okay with my mom and his grandparents. I have NEVER gone away for a weekend without getting utterly drunk and bawling while sobbing and trying my best to explain to whoever would listen about my horrible life. The despair, the challenges, the negative prospects of the future. The incoherent babblings of my feelings of doom. Yet i went away for FIVE WHOLE DAYS and I didn’t cry, not once. I got teary eyed when I noticed a special needs girl in the ocean. She fell and the family laughed and so did she. At that very moment I wished I had the capacity to have my son with me, but I didn’t cry. I prayed. I prayed that the family had a wonderful day and enjoyed the time they were having. I prayed for the girl to have a safe and healthy life, for her to enjoy whatever it was that made her happy and that the family had the least amount of stress possible. I prayed that at that moment my son was happy, enjoying whatever it was that makes him happy. I prayed for my guilt to please go away for enjoying such a wonderful trip. I prayed for all of my “extreme friends” who still struggle daily, for a multitude of reasons with their severely affected children. I prayed for Kelli, and her family and that they are adjusting okay to the life that they have had to accept.  I asked God to help me realise and accept that I deserved  the beautiful vacation. I guess it worked because I enjoyed the sun, the family,and the friends that I was surrounded by.

It is hard at times to recall how awful my life was. Just yesterday I was stopped by the same train tracks that I had thought so many times I wanted to run Preston and I into. It seems like a lifetime ago, and yet some days it seems like yesterday.

I miss my son. I have cried most of today with a plethora of mixed emotions. They run deep and they are hard to get a grip on at times. Today is one of those days. Maybe its the sun. The first glimmer of spring were good days for us. I miss having the bike ready when Preston would get off the bus. I miss his smell, his laugh, his sound. I miss Chad too, but it’s weird how I have accepted his passing and feel mostly at peace with it. However, with Preston it is so different. I still, however awful as this may sound, feel that if he had passed away it would be easier. The constant worrying over him is tough. I will never fully accept my son’s condition. I will die with a broken heart and a fractured soul. I do pray that God takes Preston before me. I can’t fathom his living without me to do my best to protect him. These are the thoughts that make the tears flow and my nights into horrific recurring nightmares that no therapist could ever fix. No amount of drugs, no amount of wine will ever take these haunting thoughts that plague my racing mind away. They are there. Some days I can tuck them away some days I can’t. I’ve been struggling lately and I don’t know why. I think it is the change of seasons. As I stated he loves the warm weather.

So Here I am posting my happy photos on social media. I no longer complain about the exhaustion, fatigue, and constant struggles associated with living with a child who is impaired and beats the shit out of you. The pictures aren’t fake. I am content, safe, happy, and mostly healthy. I just turned 40 and for the first time in as long as I can recall, I’m the most stable i’ve ever been, so is Preston. I have a bf who treats me well. He has two children that I am falling in love with as much as I am with him. I am blessed beyond words with the friends and family and supporters that I have. However, underneath the smiles, there lies a former abused mom who misses her son so bad that it literally kills her. Every single day. I want him in my daily life.

I just got off the phone from the supervisor of his home and care. Here is the skinny:

                                                December                    January                       February

Physical Aggression               43%                             11%                                  6%

Property Destruction               45%                             4%                                    6%

PICA                                        17%                               6%                                    6%

Disrobing                                 20%                              23%                                  0%

Fecal Smearing                      4%                                  4%                                   0%

These are the percentages of incidences that he has had since he was placed at the new facility in November. Not only does he go on community outings, but he is no longer abused by other clients. He earns an allowance and his favorite place to shop is at 5 below. His favorite outings are anything to do with water activities and when he is at his “home”, he enjoys getting tickled by staff and making them act like various animals. He still enjoys making me act like a monkey and a chicken, particularly in public. I suppose some things will never change… ;) I have been told that as of right now, his placement is the perfect environment for him. He should not be placed in any more of a least restrictive environment than where he is presently. He should also not be confined to a more restrictive environment. Preston is thriving in every aspect of his life, from what can be measured. Of course only God knows his psychological and emotional state from all of the trauma, but from what I can tell as his momma…. my “baby” is doing pretty damn good. I couldn’t be more proud of my booty boy.

I do not know when or if he will ever be able to come home. I try my best to bury those questions and just live day to day and enjoy the freedom that I have. I enjoy the freedom from being abused by Preston, and the freedom of the stress and trauma. I like posting my food on social media and posting my check in’s like “Joe Schmo”. It’s so cool that a friend can call and say hey wanna meet for dinner, and I hesitate (although not as much as i did at first) and I think, “hmmmm do i feel like going to dinner”? It is still a tad crazy to me that i have the option to say yes or no. It’s InSain that I am no longer a prisoner of autism. It feels good. So as many times as I cry myself to sleep at night…..I just continue to carry on. I pray and thank God for leading me into the life that he has given me. I am moving on to the next phase of my life. I am almost done with school and can finally decide what I will be when I grow up, besides my son’s punching bag, rest area, and monkey robot chicken impersonating mom.

I always say I couldn’t have done this without you. It is true. Whether we are strangers, friends, frenemies, family, acquaintances, or neighbors….I needed you. For one reason or another, and I thank you. My son thanks you. We are stable. happy. healthy. Life

                                        is

                                        good.

God bless you all and thank you for helping me in this journey. All my love and sincerest blessings to you and yours. No matter the struggles and challenges you face. We all have them. You and only YOU can work really hard to get to where you need to be. Do what makes you happy. You deserve it…… we all do. :)

Sincerely,

 Lisa and Preston InSain but thriving….:)

THEN

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NOW:         Preston and I.... Blue shirts P Close up

Dr. Phil

       I apologize that I cannot answer everyone individually or respond to the messages of love, support, advice, etc. I want you all to know that I have read them all….(I think) and it means the world to me. I figured that I would try to generalize on my blog in order to answer and respond to questions comments etc. I will do my very best.. so grab a coffee.. this could take a minute.. ;)
First of all let’s start from the beginning. My son Preston is currently receiving treatment after a year of trying to get help. He was admitted into the Great Lakes Facility for Autism which is 2 1/2 hours away from me. Preston has been there for over a year. How is he doing? Well for starters, I love my child and I post pictures of him on my facebook. Those pictures depict a happy smiling boy who is thriving. There is a lot of truth to that. Preston IS thriving for a multitude of reasons, those being:
1- environmental factors~~ Meaning there is no additional stimuli like trips to the grocery store, windows that he can break, access to appliances, dishes, television, computer, etc. No pictures. No stimuli. Period. Preston lives in a room with very small windows at the very top of the ceiling that he is unable to reach. If he does find some houdini”ish” way to reach them they are special windows that are “unbreakable”.
2- Consistency~~ 24/7 consistency. Something that I am unable to provide to him for a multitude of reasons. I’m not talking general consistency and routines that a child needs like bedtime is at 8:00, do your homework, brush your teeth, etc. I am talking about minute by minute consistency and structure. Right down to how much toothpaste is used on his toothbrush, the type of toothbrush, the brand of toothbrush, the brand of toothpaste, the temperature of the water, how we brush his teeth (assisted because he is unable to implement personal hygiene tasks independently) how long we brush his teeth, etc. and that’s JUST brushing teeth. Now go through that scenario with washing hair, body, getting dressed, dinner, getting ready for school, for bed, etc. Seeing the pictue now? Overwhelming thinking about it? Try doing it.
EVERY YEAR
EVERY MONTH
EVERY WEEK
EVERY DAY
EVERY HOUR
EVERY MINUTE
EVERY SECOND
FOR
THE
REST
OF
YOUR
LIFE!!!
I’m exaggerating, right? Yes. I attempted and as Kelli would put it, I epically failed. I DID not and was not capable of doing such routines. Nor is the treatment facility because…..ITS NOT HUMANLY possible!!!!! However, with breaks, and different staff, and constant hands on care, they are doing better than I could do as a single widowed parent who tried to maintain friendships, her sanity, a “social life”, school, work, and , teacher, doctor, friend, Speech therapist, occupational therapist, psychologist, and lastly mother to Preston. It was a bit overwhelming and I “failed”. As ANYONE WOULD!!!!!
SO now that we have that out of the way…. Yes, Preston is “thriving”, meaning he is happy as far as I know for the most part. (remember he is non verbal) I can only take the staff’s word on how he is doing. There are no cameras. I see the bitemarks, bruises, scratches, and scars on his body. It really sucks and it’s hard to bare. As a parent, I can say he is mostly safe and obviously, I am too. The biggest accomplishments of Preston being at the facility is that he is safe and so am I. PERIOD. He is not learning to communicate any more than what I have taught him at home. I am still the only one that understands him, it’s as if we have a secret language to outsiders. The treatment facility is not some magical place where miracles are happening with severely autistic children. In fact the therapist there that works with Preston has stressed that if the plan is not followed to a “T” it significantly affects Preston’s behaviors. So my question that I constantly ask myself is: How do we rigidly follow his behavior plan and execute it like a trained and experienced brain surgeon with precise hands and skill? Answer: We don’t know. It remains a puzzling paradox. Probably always will.
You see that is what is frustrating and overwhelming. We must learn to accept what it is. We must accept that our children will grow into adults who will eventually live in a group home without us to advocate for them. They will probably more than likely be medicated and their bodies will ultimately start shutting down… and then well… you know. (thinking one flew over the cuckoo’s nest? Me too… :-/ )Now I am not saying ALL children, but children like Preston. There are many.
Which brings me to this: yes I was on Dr.Phil show. I was there to express the best I could in 20 minutes or so how a parent could reach their breaking point, how we can lose hope. I am not a hero. The truth is, my story is not an original one, it’s not just our story, it’s a whole plethora of people’s stories. People I love and people that share these common traumas and concerns on a daily basis. I am not proud of what Kelli did. However, I am proud of her because she decided that she did not want to put her children through any more struggles and now she pleaded guilty and will take whatever punishment is given to her. I wonder, do people really think that her going to prison is going to help ANYONE? I don’t. Hasn’t she suffered enough? Haven’t we all? If you all only knew the stories I read in a group I belong to of those that struggle daily. It’s heart wrenching. I feel guilt that Preston is in a facility and I am safe as I read how my friends are not. It’s awful. I spilled my innermost shameful experience on national television in hopes that others would be brave enough to do the same. To let others know that in this society, there are so many that need help. Help that is not always available. I think of one woman who recently came out of the “closet”, so to speak. She posted pictures on her social page of her injuries. I’m proud of her, and I’m proud that I was a person that influenced her to do so. I want her family and friends to see just how severe and dangerous her life is. I hope and pray every single day and night that my friends get help. I pray for lenience in Kelli’s case.
In closing, the show was hard. the biggest question I am being asked is what did “I get” or Preston “get” from being on the show. The physical answer: A coffee mug and a hard cover book and an online book that was printed for me with an autograph. I did not get paid in any way shape or form. Not that I expected to. Obviously, the show was about Kelli and helping Issy. We were not offered therapy, or additional treatment. Am I disappointed? Of course a little, I will not lie. However, in the big picture… I am grateful for a wonderful family, God, friends, and my attorney.

Christenson & Fiederlein P.C. @ http://www.cflegal.net/ Although I will take this opportunity to say that even though I am a badass, sometimes you need assistance from the legal aspect to get your child help, this attorney is pretty damn good…and continues to help my son remain in treatment and receive services that he is entitled to… feel free to seek their services for your child. Mention my name and I am pretty sure they may give me a coffee mug to add to my collection, you’re welcome;)

http://www.cflegal.net/contact-us/employee-directory/10-the-people/4-chris-christenson

     I am grateful for the ongoing support that has been there for many years. Multiple fundraisers and prayers. I am EXTREMELY thankful that my son is in a facility. I mourn for him. I miss him. But we are safe for the most part. Which is the #1 reason I needed him to be in a facility. So I cannot dismiss that we have met the number one goal… “SAFETY”. We are still working on happiness and health. Aren’t we all? My story is not original. It’s OUR story. If you are in a similar situation…. suicide is not the answer. You and your child deserve to make the best go you can. It’s not easy, but life isn’t easy. YOU and only you have the capacity to change your mindset and turn a horrible and depressing life into one that you focus on the positives. Even the smallest bit. Today, I’m thankful for safety. I’m thankful for you. I’m thankful my son is here and so am I. I would not be where I am if it weren’t for the help and support from everyone that fought along with us. The letters to Dr. Phil, the complaints filed to the state, the support, the fundraisers, etc. Let’s not forget Kelli and her friends. They played a huge role in seeking services and literally saving my life and my son’s life. Forever grateful….forever indebted. I love you all so much!
Lisa and Preston of the InSain Asylum

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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

 

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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….

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