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”…………
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.
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
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
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 :)