“He’s biting your hair.”
You look at me as if I don’t notice my three year old pulling on my hair and putting it into his mouth.
So “He does that,” is all I can reply because I don’t know what else to say. I can’t explain why he is putting every single thing in his mouth right now. I can’t explain why he screams at the top of his lungs constantly (I am certain he has caused some hearing damage in my right ear…not kidding). I can’t explain why he won’t listen to me, why he throws his food or why he decides to dart off in the opposite direction all.the.time.
If I knew why, I wouldn’t be here.
When you walked in and sat down I could tell this meeting was not going to sit well with me. The annoyance at having to be here right now with me in this cold shell of a room is plastered all over your face like a billboard. It’s early, I get it. I am your first appointment and you probably haven’t had enough coffee yet. But I am here with my son who needs help. I have dreaded this appointment the entire drive over because my son is difficult in public places and waiting rooms are pretty much my nemesis. And I know he came into the room and immediately began playing with the electrical outlets and tried climbing on the table and would not listen to your commands. I get it. I live with that all day, every day.
But you chose to do this. You chose to come to work each day and to help those with special needs. You are there to mentor, guide, teach and to give hope to the children and parents you work with. And I’ll tell you, we are begging for it. We want all the help we can get because this special needs thing is hard. It’s exhausting, unpredictable and, at times, very emotional. We want what is best for our child and are trying to trust the professionals and specialists they get referred to.
But we also want some understanding from you. I’ve been a teacher. I see how many people you help a day and how exhausting and intense it can be. You deal with a lot of different children with a wide spectrum of needs. But when you are with me, in this room, all of that should be put on pause. As a teacher I learned that no matter what is going on in my own personal life, it could not show its face to the students I taught or their families. It was not their fault that I may have been having a bad day. It was not their fault that I may have been dealing with a TDY or a deployment and just wanted to curl up in my bed and not deal with life that day. I had to be 100% present for them because they deserved it. And I needed them to feel that.
Today I did not feel that from you. Let’s get real. When you stared into my eyes and asked “Is he difficult to parent?” you already knew the answer. If you had any situational awareness you would’ve taken note of the water pooling in my eyes when you asked that question and used that as a springboard for reassurance or a smile or something. There are times when I want to crawl in a cave and wait a year or two until normal day-to-day things become easier for my son to deal with. I feel isolated in this often, and you were supposed to be one of the few who understood and got into that cave with me. Instead you left me feeling alone and, quite frankly, stupid.
Your little bit went a long way with me. It stayed with me for the duration of our meeting, drove with me home and sat with me most of the afternoon.
It wasn’t until I went to the clinic to request a copy of the evaluation you did with my son that you finally left me. My son had a complete meltdown while I waited for the nice man to grab the copy for me. He was screaming his lungs out, sprawling out like a starfish on the floor and even managed to run away from me a time or two. People passed by, there were some sideways glances. I was getting hot and embarrassed and frustrated and almost left when a man in uniform came over and handed me a Curious George book.
And then he smiled at me.
In the midst of the explosive screams and crying he stopped what he was doing and smiled. I stared at him in bewilderment for a second and then told him thank you as he walked away. Miraculously, my son stopped his tantrum and started looking at the book. The man came back around real quickly and said, “Oh, and he can keep that.” That man, the one in uniform who had plenty of work to do, got inside that cave with me for a second and I felt his concern. He didn’t see a woman who couldn’t control her kid or an annoyance. He saw someone begging for help.
His little bit went a long way with me. It stayed with me as I picked up the copy, drove with me home and is here with me now as I am typing this.
A little bit can go a long way in either direction. Being a parent of a child with a special need–whether it’s a learning disability, developmental delay, physical disorder, psychological disorder, or anything else–can be a great challenge. It’s day-to-day, and a lot of times you feel beat and that you aren’t doing enough. A support system is crucial, and those that are specialists in the areas in which our children have needs should be an integral part of that system. We’ve been blessed with an amazing SLP for the past year, but because of my son’s age he is now going into a new system with new providers and possibly some new specialists because of his behavior. I pray they will be as loving and caring as our current one is. Their little has changed our lives.
Leave A Reply
Ariel, what a touching and clear view of what it is like to have a special needs child. Paulo is autistic. I found out when he was two from a TOTAL jerk doctor who saw him for 20 minutes. I went for a second opinion with a doc who evaluated him for 3 days and said, "I don't think he is autistic, I think he is quirky." That was a more satisfying answer, but he saw 2 more docs and the fourth said, "Yes, on the spectrum." But it was that first diagnosis that killed me…as selfish as that sounds, I was not supposed to have a special needs child. I have found out that he is just…special. He struggled so much and got the WORST kinder teacher…and then one month later, I moved him to Stearley, with Ms. Shepard. She was a life saver, and so was EVERY TEACHER AND SPECIALIST THAT WORKED WITH HIM SINCE. My biggest fear in putting in for a transfer was that he would lose his friends. Classmates that understood, loved, and accepted him, as awkward as he is socially. I prayed more sincerely than I ever had, for God to put us where was best for Paulo. For the past two weeks, he has been a mess. Moody, grumpy, sassy, lazy, annoyed with me…not my loving, sweet boy. Today was the first day of school. I was a mess, so was he. After school I see him and say, "How was your first day of middle school?" "GREAT!" says he. Thank God for the teachers who have read his IEP, read the notes that I so carefully penned that would help them understand that when he takes things from other's desk, it is not stealing…it is a stimulant that he NEEDS to focus, and yes, he will put it back. That if an adult likes him, takes interest in him, he will do ANYTHING for that teacher. So…my point here was to tell you not to worry. Of course you WILL worry, because you are such and amazing parent and fabulous educator. But I will say, in my 26 years as an educator and my 11 and 1/2 years as a mother of an autistic boy, the people who work with him are in it because THEY LOVE THESE KIDS. At least 99% of them do. I thought the older he gets, the harder it gets, but that is just not true. The older he gets, the more amazing he is. I am blessed with a "special" child and would not trade one day. Even the tough ones. I am officially in your support circle.