So everyone always says it takes a village to raise a special needs child. I am feeling this more and more lately as I attempt to raise you and keep up with the ever changing world around us. I need to find that community for us. We have part of it. We have our friends and family - those that are closest to us that we love but I feel that we are missing a big piece of the puzzle and that is a team of professionals, that has experience working with the multiple disabilities that you have, that work cooperatively together to find the best treatment option for you.
You do not follow any of the books and what works one day does not work the next. I become confused and frustrated and in all honesty lost in what I am supposed to be doing and providing for you next. I love you with all my heart and I know that is a huge piece to helping you heal from you past but I know I cannot provide you, by myself, all of the additional supports you need to continue to grow and to allow the world to see the young man you are becoming. I can create the opportunities and open the doors, we just have to find the right people standing on the other side.
I look at your face lately and I see a look of innocence. This is new for me. I have always known you were cute and that you use this to your advantage but lately it has been different. Maybe it is as you and I continue to grow, maybe it is the longer hair, that facial features are changing, or just a look in your eyes but something is different. When I catch a glimpse of you deep in thought I can see how wise you are beyond your years. I can see that you see the world differently from us, that you never take a moment for granted but that you also have seen the evil it can hold. You are a beautiful child on the outside and with you this comes from all your experiences and all your emotions that are deep within.
This week has been rough. Your behaviors are extreme again and the self-injurious behaviors are out of control. What are you trying to communicate? What do you need? How can I help you? Unfortunately you are not able to answer any of these questions. All I can do is sit back and watch, wait for you to allow me to move a another brick out of the way, and hold you when you are ready.
The other day I heard you in the kitchen - you could not see me so I stood back and watched for a second. You touched a bag of cookies and then started yelling at yourself. You became angry, pointing your finger at the floor, walking back into the play room yelling at the floor, looking down, and pointing at something. Then, all of the sudden, you just fell to the ground and laid completely still for a moment - not making a sound. Then, you popped up, and went through this routine all over again. When you got up the second time you saw me and again you had the face of a deer in the headlights. You were not connected, it was like watching a person struggling with PTSD as you were remembering something that had happened in your past. You were not only acting out the adult but also yourself laying on the floor, helpless and alone. Baby, I don't know what has happened in your past. I don't know if you remember everything in your past but I do know you need to continue to work through these moments. That it is a step that you feel safe and comforted enough to work through some of these memories.
You have grown so much yet I know every step forward is two steps backward. That the happy balance we have been searching for is still years away, and that is okay, but I just wish I knew where to turn next sometimes. When behaviors escalate do I call the pediatrician, the psychiatrist, or the specialist? Do I increase therapy or are you having to much therapy? Are the medications causing the behaviors and would you be better bouncing off the walls? Nobody has the answer to any of these - it is trial and error and I hate trying option after option on you even though it is for you.
I just don't know what tomorrow will bring for us baby but keep on truckin' - you are an amazing strong little boy and we will conquer this.
Mommy
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