June 26th 2000. He was here. Baby boy sain. We fought over his name for weeks. So long that he left the hospital without a name and once we decided on it we had to go to court in order to legally make that his name. But it was perfect. Preston Lee Sain. Chad picked Preston. I had a few names I wanted; Easton, Jaxon, and Paxton were my favorites. He insited on Cooper, Coleton, or Spencer. ICK.. none seemed to fit in either of our minds. He was born in East China Michigan, off the Detroit River in St Johns hospital. Canada was a stones throw away. The moment he was born I knew in my heart that something was wrong. (east china, st johns, and Canada was a clue from the start) 😉 Little did I know that almost exactly 18 months later Chad would be gone and he would be diagnosed with a “little disorder” called autism.
Life has been rough. Chad died. Preston got diagnosed. I struggled for years. About 5 years ago I looked into placing him into the “system”. I searched for group homes and none to be found that handled minors. The only way I could place him was if I signed over my parental writes and left him in foster care homes. This would have ended in tragedy. Or I could have abandoned him and then been charged with abandonment, never be able to work with kids, and had a felony on my record. I knew that wasn’t the answer so I put on another pair of big girl panties and sucked it up and said I can do this. Its my only choice.
Fast forward to September of 2012, I heard about the great lakes center and started the process to get Preston into this center. They provide INTENSIVE ABA therapy. Its a challenging therapy to do. I did it when he was younger. It costs on average $100 an hour with mileage to do this. There are less than 40 therapists in the state of michigan that are licensed to provide therapy. About 12 that work with children with autism. But it was the only shot I had. The goal was for preston to go there and get the treatment that costs $800 per day (approximately $320,000 a year) and when he came home do my best to find people that I could train to do the therapy. In all honesty Im not 100% Preston is capable of learning ABA to the extent that I need him to in order to diminish his behaviors. Im not sure I have the strength to train others. Im not sure that this is the best option. HOWEVER, you don’t know until you try and its the only option.. so Ive been fighting for almost a year and still at a stand still with no answers.
In the meantime. My son continues to be medicated due to behaviors, these medications make him eat non stop. The non stop eating makes him gain weight. The weight gain makes him HUGE and unable to physically control him. I get my ass beat daily. I say this with ZERO exaggeration. I can sit here and tell you over and over how bad he is but there is NOT ONE PERSON that could EVER understand the complexity of Preston’s disorder. Nor the complexity of our lives. My life is literally based upon Prestons needs. What time I sleep eat and drink water all depends on Preston. Let me repeat: I AM NOT EXAGGERATING! This is hard to admit, but I am literally thanking God every morning when both Preston and I are alive. This is also hard to admit: I have contemplated killing both Preston and myself many times. My faith and Christian background has prevented that.
Fast forward to a recent appointment with Preston’s long time neurologist. He hasn’t seen him in a year and our recent visit is quite simple. He was in shock. Preston was having a “good day”, in my opinion. He wasn’t being bad he was just his normal self. Bouncing off the walls (literally) jumping yelling..etc. The neurologist asked my mom to take him outside for a walk. Literally out of the building so not to disturb the other patients. She did. He shut the door pulled me close to him with tears in his eyes and said, “you can’t do this. He is out of control. He is big and could hurt you”. I started to cry and told him about Great Lakes. He shook his head back and forth and said “he is too impaired and how in the hell are you going to do treatment afterwards with no support”? I said I don’t know but I have no other options. He quickly told me about a home for boys that is ran by catholic priests that has been around for years. He is personal friends with 2 people on their board of directors. He called as I sat there shaking, worried about my mom and P outside. He hangs up after he asked some very crucial questions. They were from what I recall: do you have availability, do you take minors, do you accept medicaid and does she have to give up parental rights. the answers were yes, yes, yes, and no. I was told to call before 3:00 that day and they would be expecting my call.
I called. I took a tour. I signed the paperwork for admitting him. Phew I said it. kind of. Okay let me try this again.
I am seriously considering Preston into a permanent residential facility for cognitive and developmentally delayed adults and children.
Okay I said it. They may not accept him due to his challenging behaviors. Our intake appointment and interview is this Friday. I’m praying they take him and I have talked to them about a two month trial period. If it doesn’t work, Ill continue to fight for the treatment facility at Great Lakes. However, my gut tells me that this is the right path for us. I’m scared. I’m beyond words of sadness. I’m crying every day. I’m struggling. But I don’t know until I try right? I have tried EVERYTHING I possibly could with the resources I have had. I have spent every dollar I could and now the money is gone. I have used every inch of patience, love and nurturing I have had. Its depleted. I consider killing us to end the misery. I’m “tapped out”. I’m waving my white flag.
Tomorrow is my baby boys 13th birthday. I can’t believe it. Im distraught. I debated on whether or not to have a party, knowing this could very well be the last party at “home”, but decided to have a small gathering of very close friends. Its going to be tough. P loves bugs particularly bees and ladybugs. Kroger has toppers of bees and ladybugs for cupcakes so I went in to order them today and they have some premade but they aren’t the frosting he likes or the colors he wanted. (I asked him last week what he wanted for his birthday cupcakes or cake. he chose pink and yellow cupcakes with bugs) She told me I had to pick something else. You would have thought she told me somebody died. I started crying out of control. She apologized over and over. Then I explained that i was sorry it wasn’t her fault and that my son has autism and that he is probably going into a home and that this is his last party at home and he wanted those bugs. She cried, she hugged me. She said “well lets get those fucking bugs off those cupcakes for him!” lol God bless her. It meant so much to me. So my peanut is getting his bugs. 🙂
So tomorrow.. I’m going to try and make him happy. I hope seeing the people he knows in his life helps him to understand that they care about him. I can only pray that he understands how much he is loved. My last blog was on Chads birthday one month ago. Now its P’s birthday. I still can’t believe this is a choice I have to make. I hope he can thrive with the consistency. I’m sure ill be blogging more now that I let the cat out of the bag.
I haven’t been able to write. Yeah I’m crabby. I’m sad. I’m numb and mourning. I just lost my uncle who would be so proud of me for my choice. He hated seeing me in such turmoil. I also just lost a best friend who left behind her husband and her son who had autism. I have wanted to call her so much lately. I hope she can see this and I hope its a success. Because quite frankly, her son is not far behind Preston i’m afraid. I hope I get support from my autism friends. My “typical” friends and family support me 100%. Its my autism family that I have felt no love from. I need validation right now. I feel so many things but this is enough for one night. My chest is tight. My doctor thinks Im at risk for a heart attack. My blood pressure is high, im over weight and over stressed. I’m supposed to breathe deeply and slowly when my chest starts tightening. So enough for now, I need to go breathe.
Please pray that the center accepts Preston. Thank you. Lisa completely insain….