Early Intervention Doesn't Cut It
It isn't just the time that therapy itself takes, it is also the fact that, so often, therapy services are scattered. Sure, when your child is young you had Early Intervention sending a therapist to the house to work with your child, but then he turned three. At three years old, a horrible thing happens. Early Intervention stops. Typically, they will have spent the past several months helping you to transition your child into both school district and private services. Even with their help in locating services and getting through wait lists, the day will come that you find yourself utterly drained.
In our case, we have to drive 45 minutes for services. We also have to drive half an hour to get to the school if we need to meet with a therapist or teacher, but, fortunately, that is only on occasion. After school I wait for my children to get home. The busses arrive between 4:10 pm and 4:35 pm. My daughters arrive on the primary school bus, and my son arrives on the special transportation bus. Once they are all home, we run onto the house, make potty trips, because they have been on the bus for 30-45 minutes, grad a snack to-go, and then jump into the family mini-van.
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Once we are in the van, we get gas, if needed, and then we head a couple of towns over to the clinic where my son does therapy. While my son is in therapy, my daughters and I work on their homework. After he is finished, we get back in the van and drive another 45 minutes, if we don't hit traffic, to get home. This is our entire afternoon on Tuesdays and Thursdays. I know some families who do this even more frequently than we do.
This has been our routine for the past four years. It is exhausting. I am not certain how long-haul truck drivers handle being behind the wheel all day. By the time that I get home, my back hurts, my hips hurt, and my carpel tunnel syndrome is killing me. Sometimes my tailbone is throbbing too. The hardest part though, is the fighting. After being on the bus for 30+ minutes, my poor children are in no mood to sit for another 45 minutes on the way to therapy. We bought our van so that we could separate Joseph from the girls. He had a tendency to hurt them. At this point, he has actually become my best behaved child. Now, we are trying to separate the youngest from Joseph and the oldest. She spends the drive doing everything that she can to make it clear that she does not want to be in the van. From screaming to throwing anything that she can reach, she makes the drive miserable. This of course gets the oldest worked up. Poor Connie is expected to set a good example. Connie spends the drive studying or playing a game on her tablet (which I am proud to say she worked hard to earn money to buy for herself). She tries so hard to be patient.
Of course, there is only so patient that a fourth grader can be. Eventually she snaps, and she starts yelling and screaming back at her sister. Joseph is pretty good at escaping into Joe Joe land, as we call it when he tunes out the world, but poor Connie has to be mentally present. She can't help it. By the time that we get home my nerves are shot. I am a wreck. I walk in the house, and grunt at my husband. If he does not have supper ready, I tend to snap at him. It is time to get the kids fed and off to bed, and if he is not going to cook, I want to know to pick something up. Poor man; I certainly would not tolerate it if he came home angry at me because I don't have supper ready. The man has become a saint over the past couple of years. The angrier that I get, the calmer that he gets. He understands what I deal with on these drives, and he is incredibly loving and supportive. Dont get me wrong, he has a sense of pride and his own limits. He wouldn't tolerate it if I was walking over him anytime that I was in a bad mood. One of the things that I love about him is that he is not a push over. He stands up to me, and he is not afraid to voice his own needs. He doesn't play that whole the woman is always right game. Frankly, that would get on my nerves, and I would start to look down on him if he we're like that.
But he is also incredibly supportive, and he is patient when he knows that my patience is lost. He also tries to be home in time to keep the girls with him when we go to therapy, but he has a job to do, and like most of the population, his time is not as flexible as he would like. As a soldier, he has varying duties and rotations that he works. Recently, he was on a morgue rotation. This was fabulous for me. He was home early every day, and he stayed with the girls while I was gone with Joseph. Every time we came home, supper was either ready or almost ready; the girls we're finished with their homework and ready for bed, and all that all that I had to do was eat. Then we got the kids ready for bed, read to, and tucked in.
Have I mentioned how much I love this man?
One day, while the girls we're with their daddy, and Joseph and I we're driving to therapy, I listened to my son. I listened to him sing, and I listened to him talk to me about his day. He told me about his friends, and he told me about school and his teachers. He sang on top of his precious little lungs when his favorite songs we're on the radio. The entire time, my heart danced.
I could only understand a small fraction of what he was saying, and I understand more of what he says than most people are able to understand, but he was talking. He was talking about his day. He was telling me stories about his friends. He was expressing himself verbally. It was beautiful.
These drives are exhausting for me. I often find myself feeling worn out, frustrated, and wondering if it is even worth it. Between therapy, doctors appointments, and making time to be a Girl Scout leader (so that Connie understands that she is just as important to me as her brother is), and trying to carve out one-on-one time with my youngest, I am worn out beyond words. I add to that writing, and on top of that I went back to school too. Between all of this, I am physically and emotionally worn to the breaking point.
Sometimes I do break. I sit outside, where my children won't see me, or I lock myself in the bathroom, and I cry. I am not sad; I actually love my life. I have a fantastic husband, and I have amazing children. I cry from exhaustion and frustration.
That day, though, I drove to therapy, and I was refreshed. I heard my son sing, and I heard him speak. I was reminded why I drive. I was reminded why I poor so much of my life and energy into his therapy. I was reminded why I drive on.
Well, I'm having one of those days. You know what I'm talking about. We all have them. Things are starting to clear up, and I am formulating a plan to accomplish the impossible act of being in three places at once. I think that I can make it work.
Whether my plan is successful or not, this has been a rough morning. I don't like to complain. I much prefer to stay positive, but I also promised that if anyone wandered over here, looking for something to read, I would have something waiting for them. I could write more about my day, but since I prefer not to dwell on the negative, I thought I would share something that I wrote for a class a while back.
This is a cut version of a larger play; I hope that you enjoy it:
Whatever It Is, Its Not Autism
by Kelly Ponce-DuBowik
SARAH: The mother, Sarah is a kind woman in her early thirties with infinite patience for her children, but not nearly so much patience for her husband. She has a hint of a southern drawl that comes and goes and is strongest when she is angry.
THOMAS: The father, Thomas, is a loving father in his late thirties. While he is loving, he is also old fashioned, and he is struggling with denial over his sons special needs.
TEMPERANCE: The sister, Temperance, is named after her grandmother; the little girl is the family glue. She is only briefly featured, but it is clear that she is her mothers strength.
MICHAEL: A little boy with special needs, Michael is hyper and sensory seeking. He is prone to melt downs, but he also can be very sweet.
The curtain opens to a family style restaurant where a couple with a toddler-aged boy and preschool-aged girl try to eat supper. The appearance is given of a crowded restaurant. Focus is on the family seated at a table stage down right. The little boy jumps up and down and flaps his hands next to the table while his family eats, and the father becomes noticeably agitated. The boy has a large drool stain on the front of his shirt and is covered in food. There are a few other tables with people seated on the stage including a late middle aged couple seated at the table center stage. No visual focus is given to the other dinners at this time.
SARAH: [calmly] Just finish your meal. If he doesn't start spinning we can get through this.
Thomas: [aggravated] You're spoiling him. He needs his butt whooped. God, why do we bother trying to go anywhere? All I want is one nice family evening. Am I really asking too much?
SARAH: A spanking isn't gonna teach him to talk. It isn't gonna make him sit still. Its just gonna make him scared of you. [Calmer] If he can't talk he isn't going to understand why you're hitting him.
THOMAS: He understands plenty. Dont underestimate my son.
SARAH: If you want a nice family outing then we have to give him the chance to learn how.
THOMAS: Then teach him! Correct him, for once!
SARAH: I correct him when he does something wrong. Standin next to the table and wigglin around a little bit is not doin somthin wrong. Its his way of copin.
TEMPERANCE: Stop fighting!
SARAH: [low and looking mostly at the table while smiling] We aren't fighting. Were discussing. Now, eat your supper. Michael, please sit down. Dear, lower your voice, and try to be calm, or he won't be calm.
The boy crosses to the table at center stage and takes some food from the womans plate. The woman looks up and smiles as the mother crosses to the boy while looking mortified.
SARAH: I'm so sorry, maam. [Then to the little boy] No! We do not take food from other peoples plates. Not okay!
The little boy makes perfect eye contact with the mother and grunts then shrieks and giggles as he breaks free and runs over to his sister and grabs her food. His mother sighs and looks back to the woman at the table.
SARAH: I'm really sorry. I'm trying. I'm just afraid that if I don't take him out he won't learn.
WOMAN: [sympathetically] Its okay. I teach children with autism, and you're right. You have to try, or he won't learn. I would suggest dinning at times when the restaurant is less crowded until he learns to handle crowds better, but I really only mean that as advice, not criticism. This is going to be a long road. You are doing a good job, and these first few years are really rough.
SARAH: I know something is going on, but whatever it is, it's not autism.
The curtain opens to the little boy, now about four years old, playing in a sand box, stage left, on a playground with a little girl of the same age. The sister, also age progressed, is playing with an age mate, up center and less focused while the mother watches and talks with the mother of the sisters friend from stage right.
SARAH: [Observes her son hand a sand box toy to the little girl and sighs with relief. Then she turns to the other adult to speak.] See that! I don't know what that doctor was talking about.
ADULT: What did he say?
SARAH: He said that that besides being willin to bet his car, his house, and his medical license that we we're headed for some ADHD meds, he was pretty sure that when all the evaluations came back we'd be lookin at autism. He says that I shouldn't look at autism like a spectrum. Says it's more like a box, instead. Says in the center of the box is the textbook autism case. On the far left and far right are the ends of the spectrum, but all around it are variations that you never see on television or in textbooks. He says there is room in that box for Michael.
ADULT: [Nods sympathetically]
SARAH: But you see that. Hes sharin with that little girl. He is really social. He just does things his own way. [Fighting back tears] I mean, I know something is goin on but [shakes head]
MICHAEL:<[i>Pushes over little girl and takes back the toy then looks at her blankly when she begins to cry. ]
SARAH: [Runs over, to stage left, to correct her son ] No! [Firmly but calmly ] Give it back to her. When we share, we share nicely and wait patiently for our turn. [She then gives the toy back to the little girl. This provokes a violent meltdown from her son] . Shhhhhh. [calmly ] Blow away the angry. Its okay. [Makes blowing sound ] Blow it away.
MICHAEL: [Fists clenched, he stops screaming and attempts to blow]
For a moment it seems the blowing might work, but then the little boy loses whatever control he was beginning to gain and is in full meltdown mode. He becomes physically aggressive and attacks his mother. She holds him as carefully, as she can, calmly repeating herself.
SARAH : Shhhhhhh. Its okay. Its alright [repeated a few times in a singsong voice even though the child is clearly injuring her ] Its going to be okay.
TEMPERANCE: [Meekly and standing safely behind her mother as if she knows this routine well] Mommy, are we ready to go home?
SARAH: (To her daughter, but without looking at her she speaks kindly with just a hint of both pride and sympathy for her) Yes, my little love, as soon as I can get him calm enough to move.
The mother sits at a low table center stage with another woman and a stack of paperwork Michael plays with toys on a circular carpet near a small bookshelf stage left. This is a planning meeting to begin a special needs preschool and therapy program for Michael.
TEACHER: There are six other children in the classroom. Michael will make seven. We have a maximum of eight. Right now, we have all boys, but that's not always the case. We love it when we have little girls too. Its good for their social skills to be in as diverse an environment as possible, but we do see more boys than girls. We work with the general prekindergarten class as much as we can for skill modeling, and we do art, music, and library class with the general pre-kinders.
SARAH: Are all of the kids in the class nonverbal like Mikey?
TEACHER: No. Actually, all of them are verbal, but to varying degrees. That is what is really great about our class. Right now we have a wide range of skill levels, so there are some great verbal models for the less verbal children and some great social models for the less social children. They all help each other out.
SARAH: [meekly] Hes been doing speech therapy for a while, and he has some sounds now and a few words too, but he gets nervous and has trouble using them. He tries to sign, but his motor skills aren't very [pause] well he's clumsy, so it can be difficult to understand his signs. Instead of signing cup like this [signs cup ], he does this [hits fist against arm], and instead of this for eat [signs eat], he does this [taps self in mouth with fist]. He tries to grunt a few things to make his point too, but he gets mad when people don't know what he is saying. Its [starts to cry really frustrating for him. I tried to put him in an hourly preschool class once so he could be around other kids, and he just cried and screamed the whole time because he was so scared. No one understood him. No one tried to understand him. He really does want to be understood. He wants for someone to listen. I'm so scared for him.
TEACHER: What are you scared of?
SARAH: [still crying] I'm scared of him startin school. I'm scared of leavin him here every day without me. I'm scared of not bein around to protect him, but I'm also scared of not doin it. I'm scared of keepin him home with me, where I can't help him enough. Some of the doctors say he has autism. I don't think that's right. He has somethin. Whatever it is it's not I don't know; it's just[pauses ] he tries so hard. I know he needs more than I can do for him, but I am so scared of leavin him here where he might get hurt or picked on, and not be able to tell anyone. I am scared of leavin him without me when he can't communicate.
TEACHER: [Smiles warmly and states in a way that makes it clear that this should have been obvious from the very beginning ] Every behavior is a communication.
[Lights fade out while a spot on Michael spinning in circles fades the slowest ]
You know that thing? That thing, you know that thing that makes you get out of bed in the morning. We all have one. No, no not your alarm app. I am talking about the thing that gives you purpose. I'm talking about the thing that causes the first smile on your face each morning.
I didn't figure out what that thing was until a few years ago. Sure, I love my husband, my parents, and especially my kids. I have friends and pets, and I have hobbies. There have been jobs, and there has been a lot of volunteer work, but it was only a few years ago that I stopped hating the morning.
When my son was a baby he didn't get to his first words like other kids do. He didn't say his name, and he didn't label objects. He did manage a sound that stood in for Mama , and another one that meant he wanted food. Mostly though, he just grunted or shrieked. Dont get me wrong; I am a mom, so of course I knew what each and every grunt meant. Sometimes, I didn't even realize that he wasnt using words. Urghhg sounded just like; I want my toy train, to my ears.
One day, two years ago, my husband was about to deploy. He was upstairs, on the night before he would leave, tucking in our children for bed. Dave, my husband, had just recorded himself reading a Thomas the Tank Engine book for Joe to listen to during deployment. They curled up in Joes bed, and together they listened to the story. After the story, my husband tucked him in, just as he had done with our daughters, and then he came down stairs.
When he got to the kitchen, where I was making my evening tea, he looked at me, and he had the biggest smile that I had seen on his face since the day our first child was born. With tears in his eyes he said, He said, I Love you, dada.
It was not said with the clarity that one would expect of a five year old, and to be frank, if other people heard the words, they probably would not have known what my son was saying, but his daddy knew.
Moments like that are things that most people will never fully understand. Hearing your child say that he loves you for the first time is special for any parent, but hearing a child, who is mostly nonverbal, say those words right before leaving for a deployment is a joy that can only be expressed by the tears in my husbands eyes that evening, not by any words.
If I could go back and undo my sons condition, I would. I know that parents always say that they would not change their childs special needs if they could, but I would. I would make it so that my son never had to have another seizure, and I would make it so that he did not need to spend nearly half of his life in therapies to learn to speak, hold a pencil, or sit still. I would undo every single struggle he has had to face, if only I could, but, I would do it at great personal loss.
My son has changed me. He has taught me how to appreciate every little joy in life. He has shown me, just how much a few words or a well-timed smile can mean. My son makes me into a kinder and more patient person than I ever was before he came into my world, and each and every day, he is the first smile on my face.
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Posted in Performing Arts Post Date 03/02/2017