have you ever tried to make it through a day when your heart was completely broken. I mean broken to the point where you just keep running around in circles as if you are doing a lot of things but in reality you are actually doing nothing? I think I have lived my life like this from the moment I realized something was different. I can remember staring at him as he sat transfixed on the dancing deep blue colors of finding nemo as I would match socks and running a load of laundry knowing in the back of my mind I would inevitably forget about and have have to re-run the next day. Thats just how it is when your mind is constantly racing as you obsess and run through every possible way to help your child that seems so far away from you even as he sits not five feet in front of you.
We are seven years of intensive therapy into our journey and I still cant reach him. Today, Thousands of hours, dozens of therapists and doctors, hours upon hours of research on my end, countless tears cried, thousands of dollars spent and today as I read his new evaluation his numbers remained in the less than first percentile in every category of functioning. After looking at the charts with all their plot points and empty lines I couldn’t think. I blinked as as the tears sat in my eyes not falling I could see the new speech device that I had fought so hard for hoping to hear at least his inner voice and stared for a moment as it all came crashing in. I gently closed my laptop as if to shield myself from the realities on the screen and sat in silence.
That was seven hours ago and I still can’t set down all the thoughts in my mind. I have always been the one to think positive. Even when I made that switch from hoping he would be that one in a million to hoping for a good quality of life, then it was the hope that he would never end up in a care facility, then it was “I just want him to be the kind of patient that a person wants to take care of” and now at this moment, if I’m honest, the thought is, “I hope I’m healthy for a long time to keep him out of those horrible environments as long as I can. At least today, in this moment, he is safe.”
Therapy was rough today, he was off keel. He was screaming and clapping in frustration. I walked into therapy and slid up behind him as he sat on the floor across from his therapist with the laminated money still sitting in front of him and he put his hands over mine and put my hands over his ears. I held his ears so tightly to shield him from the noise of the world and closed my eyes and rested my cheek on the side of his head covered in his trademark hoodie that he always wears to protect himself. My heart hurt as he collected himself and the therapist said, “give me five dollars”. I’m living life broken hearted and scared.
Everyone looks at me as if i am this “warrior mom” like I have all the answers but i dont. I have done more research than the FBI, I have read more books, talked to more people, written more things than I could ever count but I still cant reach him.
Working in the field now and watching my son I feel more confused and lost than ever. BCBAs elude me. I cant figure it out. I get the breakdowns in the client therapist relationship. Its destined to fail. I was sent the results of my sons six month re-evaluation through email (at my request to be fair) and as I looked at the data I saw the boy behind the data. I saw a broken hearted momma trying to make sense of it all. I was rewinding the past six months in my head wondering what I had done wrong, what i was missing, questioning if the data was skewed in some way. “Did I answer the parent questionnaire wrong in some way” I thought, “Should I have blackened the number 3 bubble on that one question instead of the number 2?” And as my mind raced There was no one sitting there saying, “but he is doing this now and he wasn’t doing _______ six months ago” all I had were “<1%” and line graphs pointing downward staring back at me and as my world was crashing in the words “professionalism” became less important to me.
I began to see videos in my head of techs in and out of my house as I frantically cooked dinner in the evenings and the task analysis’ I had been running even without the therapists there in hopes to progress further so as to work on something new and yet, “<1%” is what I saw. I’m not even angry. I’m too tired to be. I’m too defeated to be. This up and down is just too much some days. Its so exhausting and even I cant keep up with myself.
Lately, as I bow my head to pray, no words come. I just sit there head down blank in the silence and all I can do, as my eyes open to the same situation, is hope that God can fill in the silence with what he knows I need. My faith is wavering on this one. And as I look up to the sky it continues to lose its mystery.
Life is heavy right now. I keep fighting, I keep trying to keep pressing forward as the world keeps turning. I make sure every door is locked and alarmed, I make sure every window is screwed shut (we found him on the roof twice and he likes to throw things out windows), I hide the toilet paper so he wont eat it, my couches have been replaced with a big pod swing and silence can send me into a full out panic in fear he has run away again despite all the safeguards.
And I don’t know what words will make it okay. I don’t really think that there are any really. What I do know is that I won’t give up its not in my blood. I don’t care if I’m almost 80% gray at 34 years old. I don’t care if I never feel good because that is my everyday. I can’t change the way the world sees my kid.
To some, hes a paycheck, hes domeone’s paid rent or the newest iphone in their pocket. To others, hes that annoyance in the restaurant with his moans and occasional yelling out. But to me, he is the most beautiful boy in the world. He has never said one mean thing about anyone (except that time he called his therapist a “deadbeat” because she was holding out on his ipad he he). He is the most pure thing in this life. If it weren’t for the rest of society and the fact that one day I won’t be here to protect him I wouldn’t want to change a thing. But that’s not reality. Not even close.
Maybe tomorrow, as the dust settles from the results of this evaluation, things will be better but tonight this is where I am. Wondering what would have been if he had gotten therapy at diagnosis. What if we had insurance coverage? What if we were allowed medicaid and didn’t lose all that time waiting for legislation to pass? what if this? what if that? What if I could just open that door to let some light in without fear of finding him in a police car or worse. Just a little bit of light. what would it be like? To live life with just a little bit of light? Even in those moments at the kitchen at the table with only the night light illuminating the table because the main light hurts his eyes and he turns it off immediately upon entering I wish for just a little bit more light because the dark is painful and I have been finding myself in the dark way too much lately.
Tonight as I lay my head on the pillow with the vision of “<1%” in my mind I will find peace only in the knowing that he is sleeping soundly and is no worse off than he was the day before. Its us that are hurting not him and for that I am thankful. I guess thats true love when you are more than willing to take the pain of someone else without question or expectation. Maybe that’s the lesson. Maybe God is answering me everyday, “God what is love” “Let me show you” Love, God.