I have a coffee stain on my ceiling. “How? ” I thought. But quickly the “how” became an “of course”.

My 29 yr old autistic son has a bedroom directly above the dining room, where the ceiling is stained. I asked him ” Brett, did you happen to spill coffee up here. or in the hallway?” We had recently ripped out the old flooring in the hallway, leaving only a sub floor temporarily. “Not that I can remember? his usual answer, especially when he thinks I might be mad. Truth was, I wasn’t mad. I was resigned to it, because I already Knew he had spilled his coffee. He always does.

Yesterday, an announcement was made that there might be a correlation between Tylenol and autism, and the mother’s use during pregnancy. If I am being honest (and I am) I don’t know how I feel about it, or what to do with it. What I do know is this…Unless and until You have been diagnosed with it or have lived with an autistic person Please keep your opinions to yourself about it. Some “experts”, like to say how beautiful autism is, and there is beauty. But, and it is a big but, there is also sadness, loneliness, isolation, rejection, anger, resentment. I could go on and on. We have lost, what we thought were friends. We have been made to feel like liars by people who are supposed to be family members. All because we put our son before Any of them. Again, unless you live it, please, be quiet. Still, I am not mad or upset about the announcement. It doesn’t change my son, or our situation.

I have so many caseworker meetings. All to benefit him. We are Forever parents, (if you are not aware of the term, look it up, it is a real thing). During each meeting, they ask my son multiple questions, which he answers with his unique sense of humor. It always leaves us all laughing. Then they turn to me, and ask Me, if I need help, am I doing okay. With Every fiber in my being, I want to say, “No. no I am not okay. I am tired, exhausted. I am sad, and stressed.” But, I never do, I simply say “I’m good”, with a forced smile on my face, and eyes trying to communicate to the caseworker, without saying a word, because I don’t want my son to feel bad or embarrassed. Inside, I am screaming.

We have holes in the hardwood floor where my son rocked( part of his “stimming”) so hard the springs came through the chair and spiraled a crater in the floor. We have replaced his bed more times then I can count, for the same reason. Daily I have to tell him to wash himself, brush his teeth, to wear weather appropriate clothing. To not eat all the food in the house. He still can’t tie his shoes. These are just a few of the daily things my husband and I ( and his siblings) deal with. There are very very hard days. There are also wonderfully happy days. Days that we don’t feel stressed or tired. But those days are fleeting. Please don’t misunderstand my point. I love my son, Exactly how he is. Exactly how God intended him to be. So I feel Guilty for even entertaining the other thoughts. So to see people on all sides of the issue, arguing over yesterday’s statement, is just another gut punch.

I don’t know what it’s like to have cancer or diabetes or other issues like it. So I would never interject myself or my opinions to someone who does. I would just say ” do you need to talk?” A Dr. can diagnose autism, a therapist can help them, but They Don’t Live it. They aren’t in your house for the meltdowns, for the outbursts, for the frustration. They aren’t with you as you hear your child up all night long, t.v. volume maxed, chair rocking so hard the walls shake.They aren’t with you in the weeds of it. I may not be educated in the autism field by Professors and the like. But, I can guarantee I could out debate most of those who are. I may not have a litany of letters behind my name, stating a fancy title, but what I do have is a heart for anyone walking in my shoes. new to the autism village. Where we fiercely protect our own. I don’t have a Masters or Doctorate, but I have absolute unconditional love for my son, and coffee stains on my ceiling.