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…..:)
The InSain Asylum xoxo