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