It starts with a question, and then we wait, but there is no response. The question comes right back at us. Jonah very rarely can answer questions, unless they are yes and no, and even then at times he has a hard time answering without us leading him.
His ST has been working with him the past few weeks on answering simple questions. I have also tried to really work with him at home. There really hasn’t been much progress, but that’s okay because we learned the shapes circle and star this week. And that’s enough to keep me content for the moment.
Today I exited the bathroom to find Jonah playing near the couch, and Luke, my one year old, without his diaper on smiling. Someone had peed and pooped on the floor. Not a very big deal in this household, but it was the perfect opportunity to ask Jonah a question.
“Jonah, who pooped on the floor?”
Jonah turned to look at me, then the poop, and then went back to what he was doing.
I said it louder. He stopped.
I said it again, even louder. He turned.
I crazily yelled it, holding back laughter. Now I had his full attention.
I asked him again, and this time he repeated, “pooped on floor.”
“Who did it?”
“Did you do it?”
“Did Luke do it?”
And then we both looked at Luke and laughed.
I left the room to get cleaning supplies, and I could hear Jonah from the front room repeating, “Who di it?”
When my husband walked past, Jonah looked at him, still asking who did it.
If was hilarious. Ten times Jonah asked who did it, all going off my initial question.
So how do we celebrate such accomplishments?
“Princess. Et go.”
To the normal ear, that is quite the puzzle. To my super human mommy ears, I know that means he wants to watch Frozen so he can hear the princess sing Let It Go.
I’m exhausted. Is this the way it is always going to be? I’m tired of fighting for services. I’m tired of setting up evaluations. I’m tired of being told our insurance doesn’t cover something, won’t cover something it already does, and that I need to drop services.
I refuse to drop private therapy unless Early Intervention agrees to pick up those hours. They can’t agree to that unless it is ordered by their therapist. Initially Jonah was given one hour of therapy a week. I had to fight for EI to give him another hour. And then, when he still wasn’t making progress, his doctor ordered more therapy, private therapy. So unless my son gets three hours of speech therapy, which is what he is getting now, we are going to have a massive problem.
And I don’t want to have a massive problem. I don’t want to argue. I don’t want to fight. I just want my son to have what he needs. I understand budgets and funding. But what I am having trouble understanding is my son, and that is a problem.
How many kids go to diagnostic clinic and leave without a diagnosis of autism?
That is the only question I can think about lately. My Facebook page has been lit up by the upcoming autism awareness month, and I’m feeling frantic. I can’t say my son has ASD because he is only “suspected” of having autism at this point. June 11th will bring us the answers we have been waiting for, but until then, I feel like I can’t do anything in realm of autism. I want to join support groups, find parents to connect with, enroll Jonah in special preschool programs, but I can’t, because until they diagnose him, I can’t own it.
Autism is something we have come to terms with, but not something I am comfortable owning until I am sure that is what is going on with Jonah. Suspecting that it is autism is not the same as saying it IS autism.
I know it sounds stupid, and pathetic, but I just want to belong to something, something that is supportive and has people who understand what every day life is like. Something that is real, and honest, and here. I am constantly barraged by family saying things like, “he is in so much therapy, he is only two”, “sometimes I can understand him”, and “it’s not that bad.” And they don’t see what life is really like. They don’t see the melt downs and the hitting and biting. They don’t see the grunting and finger twitching. They don’t see the running away , the hiding from people, the withdrawn eyes. They don’t see what my life is really like, and I am thankful for that because they get to see Jonah as a little boy, and not as a special needs child. But that also makes my life harder because no one understands what it is like.
I feel so alone, and even after we move, I won’t reach out to autism support groups until I know for sure because what if we get to diagnostic and they say it’s not autism? Then what?
So I need to know, how many kids go to diagnostic clinic and leave without a diagnosis of autism?
Our move date was March 22nd. We are still in the old house, and surrounded by boxes! Everything is on hold. Everything. Including Early Intervention therapy, which has been transferred to our new district, where we are not. In hindsight, I should have waited until we actually were in the new house to call our caseworker and inform her of the move, but I didn’t want there to be a lapse in therapy. Well, we are now starting week one without therapy, and I have to say, it’s kinda nice. No rushing Jonah places every morning, no making sure everyone is dressed in the morning, no diaper bags and weighted vests. It’s just us, in our pajamas, hanging out. And if it weren’t for all these boxes surrounding me, life would be pretty perfect.
I had a wonderful chat with the Early Childhood department at the new school district this morning, and Jonah is all set up for his evaluation on May 1st. She reassured me that it would be a no pressure situation, and I could tell Jonah we were just going to play with some people. I was my normal, polite self on the phone, but in my head I was laughing. We have been through so many evaluations that this is routine for Jonah.
The past few weeks have brought us much talking, but with that talking has come much hitting, screaming, and throwing toys. It has gotten so bad that my five year old told me, while crying, “Jonah is always hurting me. Anytime I touch something he wants, he hits me or throws toys at me.” We had a talk about how Jonah still needed our help and love, and how mommy was sorry that I wasn’t there to stop Jonah’s behavior. That’s my fail. I should have been right there to stop it. My new mission is to be Jonah’s little shadow, because how can I correct the behavior if I’m not there to intervene?
Today was our last day at church since we are gearing up for our move next week. And Jonah put on quite the show.
Sunday school: Jonah sat in Sunday school class. Key word, sat. He didn’t hide under a table, chair, or in the corner. He stood in front of me for a while and then took a seat next to his big brother and quietly played with his planes.
Church: Jonah ran circles around me. We sit in the back, and Jonah ran circles around the pew and back of the church. He laughed and laughed, and while I tried to stop him and calm him down, secretly I was so happy, because he wasn’t hiding. He was out in the open.
Children’s church: For most of the time Jonah played by himself. My husband and I snuck away, and he didn’t seem to care, so we ran back up the stairs and listened to the sermon. Later I went back to check on him, and he was still playing near his brother. I was in shock.
After church, as the parents picked up their children, I spotted Jonah leaving the toys and walking off where the older kids were kicking a ball back and forth. At first he just watched. Then he walked in between them and said, “throw ball.”
I couldn’t move. I couldn’t think. All I could do was pray that what I was seeing was really happening. The little boy didn’t understand him, so I told him what Jonah said, and he smiled and tossed the ball to Jonah. And then, the three of them played catch. I wiped the tears from my eyes and just watched. Jonah was not playing near someone, he was playing with someone.
This morning I as I dropped my son off at preschool I truly realized how dire this situation is.
Imagine: one woman exiting her car and walking through a parking lot with a five year old, a two year old child with behavior issues, and a one year old child who isn’t steady on his feet while trying to juggle a backpack and keys. This woman is visibly tired, has stains on her pants and sweatshirt, and is barking orders at her children to hold hands.
She enters the building, carrying the one year old, and dragging the two year old up the stairs. She signs her preschooler in and starts to leave. She makes it all the way to the car without incident. She opens the door, smile on her face, and let’s go of her two year olds hand, so he can climb in. And in that second, he runs.
Now she is chasing him, screaming, because cars are driving through the parking lot. She is trying desperately not to drop the one year old in her arms, and just as her two year old rounds the curve of the building, a car slams on it’s breaks. The car startles the two year old, giving the mother just enough time to grab his coat and arm.
All I could scream at Jonah was no. That’s all I could get out because all I wanted to do at that point was sink in to the building and cry. After getting both boys back in the car and secured with seat belts, I explained to Jonah how scared I was, how dangerous that was, and how he could never ever run away like that again. I’m not sure if he understood.
It’s amazing. I feel like the worst mother in the world. All I can think about is what would have happened if that other parent was going faster or didn’t see him. Jonah has been horrible the past few days. Yesterday he ran away from me in the library, grocery store, and tried to run through a parking lot. He’s been screaming no at me and refusing to do everything. Every single thing during the day is a battle. I am so exhausted by 1pm that I can barley keep my eyes open.
I called my husband crying and told him that we are going to have to put Jonah on a child harness when I have him out in public. I hate the idea of leaching our child, but I just can’t do it anymore. He is so much faster than me, and when I have all the kids with me, I’m even more vulnerable.
Dear father of a special needs child,
Stop pretending to be so strong. I know society has told you to be the rock of the family and that showing emotion is bad, but you’re not fooling anyone. You are allowed to be upset. You are allowed to be frustrated. You’re allowed to cry.
You’re not here for the routine. Don’t feel bad about that. You’re working, providing support for your family financially. None of the therapy sessions could happen without that money. And don’t feel bad that you don’t know the routines. How could you possibly know that there is a specific order to the chaos? Don’t feel that you’ve abandoned us because you left for work. We will be fine, and when you get home, shower us with love and affection, because you have no idea what happened while you were gone, and sometimes we put a smile on because we don’t want to let you in on how sad we really are.
Stop being so worried about the future. Trust me, I worry enough for the both of us. What I need from you is a different kind of worry. Worry about milk, eggs, and clean clothes. Worry about the last time I got to take a shower or nap. Worry about when we are going to the zoo. I have the future covered. I need you to worry about keeping us in the present.
Look at me. Kiss me. Hold me. Touch my back while I’m doing the dishes. I feel like children have taken over my identity. I’m no longer a woman; I’m a mother, therapist, bouncer, dancer, pillow. I need you to remind me that I’m a wife, too.
Look at your children. I know at times it is hard, at times it is so frustrating you want to scream, but look at that little face and remind yourself that he is worth the battle.
Now look at what we have. Look at our house, our cars, dressers, beds. Realize they are just things. A house is only a building. It’s okay to give that dwelling up and move. It’s okay to get rid of things for progress. And it’s okay to be terrified of change. All the dreams you had for your children, your house, your future are gone, and they have been replaced with fear. Don’t let that fear make decisions.
When people start slinging around words like normal, autism, and apraxia, smile and nod. In your heart you know they are only words, and they define no one. When people stare, smile and nod, because they have no idea what a wonderfully hard life you have, and they will never know the pleasure of truly knowing your children. When people make comments, smile and nod, and in your mind, imagine that you are punching them in the mouth. But don’t resort to real violence, because no one has the money to bail you out of jail.
When your wife is crying, it’s okay to cry too. When your child is frustrated, it’s okay to sink to the floor and hold him. It’s okay to be real, and silly, and scared.
And when your wife is yelling at you, telling you that she can’t do this anymore, questioning everything, tell her it’s going to be okay, because the battle you are going through, she is going through too. And sometimes we all just need to act a little crazy.