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The Second Time
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I don’t know what I am going to do. I will just do what I can and hope we pull through. What else can I do. Do you know of any place we can go? Yes, I didn’t think so.Yes, for now the hospital seems like the best option. I don’t care which ER we go to. A pediatric ER sounds good, let’s try that.
When we came back my daughter had calmed down some. She was no longer attacking the police. Instead she was pacing the room like a caged animal and randomly throwing exercise balls around.
I went to go in and help, but one of the police officers brought me back into the hall.
“We got this. She is calming down.”
I never got to take a step back from her meltdowns. For over two years I have been on the frontline for everyone.
Fifteen minutes later my daughter was sitting quietly.
“The ambulance is still an hour and a half out. If you think she can make it we can drive her in.”
“She’s done. She’s apologizing. We can make it.”
So we rode to the ER in the back of a police car.
I had gotten a new job, one that paid more money. I had taken my daughter out of her free after school care and put her into the YMCA. The school after school care had asked that she not come back, after they had to keep evacuating classes for her meltdowns.
When we visited the YMCA I told them everything. I told her how she was asked to leave her last care provider. I told them how her meltdowns were so bad that she had to be separated from other children. I explained that she was super smart and very cute. I told them they would forget that she was autistic. Then they will expect her to behave like all the other children. They will stop allowing her little quirks which help her to cope. Then the problems will happen.
They assured me they had many children on the spectrum and everything would be just fine.
She lasted through the rest of third grade. Then she made it through the summer. Fourth grade started out fine, but then they started to forget.
“She started fighting with another kid today.”
“What happened?”
“I don’t know. Everything was fun and then she just started yelling at him.”
“I will talk with her, but she has a hard time understanding other kids. Maybe she can have some quiet time so she can relax. She will do better if she can have a bit of space.”
Then there was my favorite conversation.
“She refused to leave the room during the fire drill. She went and hid behind a bookshelf. We told her how that was not acceptable behavior. She got in trouble.”
“Did anyone explain what was going on? Did anyone help her to transition?”
“It is a fire drill. She should know.”
“What about the other boy who is here. Is he in trouble?”
“No, he is autistic. He has a hard time with fire drills.”
“SHE IS AUTISTIC. SHE HAS A HARD TIME WITH FIRE DRILLS.”
I only yelled on the inside. On the outside I said the words comely, hoping they would actually listen. Maybe I should have yelled.
They didn’t understand why it took 30 minutes for her to let me leave in the morning, or why she hid behind the flower pot, or why sometimes everything was fine and she played so nicely with all the other children. Then the next day she wouldn’t stop climbing up the fence and using the poles on the sun shade as a monkey gym.
Near the end I was getting calls two or three times a week to come pick her up. I had already scheduled it so she only stayed an hour. However, some days she didn’t last minutes until the YMCA bus dropped her off at the center.
The last day I was met at the gate by one of the staff.
“She’s had a hard day. She won’t listen. She yelled at a boy today.”
“I get it. I know one day you will kick her out. I haven’t found anywhere else for her to go yet.
I went and signed her out.
“Can you maybe just let her be alone a bit more? Can you treat her a bit more like the other kids here who have autism?” I was practically pleading at this point. I had tried to find a new place, but there was no place for her. She had just gotten turned down by the Regional Center – even though she scored as autistic. She was too smart. She was too female. It was too easy to overlook the glaringly obvious signs of autism because people were too busy looking for nonverbal boys.
As if on cue I saw her. She jumped on the ramp railing and onto the ground. It was a six feet drop. Then she went running into the main building.
“Oh, I didn’t realize she had reached this far today.”
She zoomed out of the building and back into the bungalow that served as the after school room.
I looked for her for ten minutes before finally finding her hidden behind some bookshelves. Before I could catch her she zoomed out and jumped of the railing. Then she went to climb the ten-foot fence.
I plucked her off. She fought at this point completely lacking control. I was afraid to let her go. Afraid she would hurt herself.
She bit me and escaped. I caught her on the ramp to the bungalow.
She had medicine now. If I could get her to take it she would normally calm down. Seroquel was the only progress we had made in the last three years.
I put her pill in her mouth and she spit it out. I tried to put my finger down her throat to make her swallow it. She nearly bit off my finger.
I used my calm voice to try and get her to take her medicine. My legs were wrapped over her legs. My glasses were tossed a few feet away where she couldn’t reach. When she started clawing me, often drawing blood, I held her arms. I hated to do that so I mostly let them loose.
She was screaming at the top of her lungs. She was yelling to everyone who could hear that she was being kidnapped. She was screaming to be let go. The rest of the YMCA kids had been moved to the nearby park.
“Take your meds and I will let you go,” I said over and over again in my calmest voice.
She screamed and screamed.
“Help!”
“She is kidnapping me!”
“Someone save me!”
Once when she was having a meltdown by the library I held her as she screamed. A woman walked by and I was terrified of what she was going to say. She just smiled at me and told me that I was doing a good job. I explained that she was autistic, but the women already knew. She smiled again and walked off.
The staff at the YMCA didn’t smile. They didn’t offer to help. The called the police and stayed as far away as possible.
I first saw the police car through the center fence. By the time he entered the gate on foot I was prepared for him.
“She’s autistic. She’s having a hard day and was hurting herself. That is why I am holding her.”
“What do you do to get her to calm down?”
“I have medicine. It will kick in in about ten minutes. But she won’t take it.”
“How can I help?”
I was so stunned I didn’t respond right away. No one offered to help. Not even her therapists offered to help. They stood around dumfounded waiting for me to solve the problem.
“I told her if she took her medicine that I would let her go.”
During this whole conversation she had kept screaming.
“Help!”
“She is kidnapping me!”
“Someone save me!”
Then he helped. He used his authority as a police officer and as a man. He told her in a calm voice that he was here to help her. He told her that if she took her medicine that I would let her go. He told her everything that I had told her.
I put her medicine to her mouth and she took it. Then I let her go. If you make a promise you have to keep it, or they won’t believe you the next time.
My daughter got up and bolted straight off the ramp, to the ground, and into the main YMCA building.
“Will she hurt herself?”
“Yes, she was climbing fences and jumping off railings. She has a long history of suicide attempts and risky behavior.”
We went into the building to find her.
It was easy. We followed the loud banging noises to where she was tearing apart a weight room.
I went to grab her. I needed to stop the destruction. Yet the police officer stopped me. He went to her and pulled her into his arms. For once it wasn’t me receiving the blows. She stomped on his steeled toed shoes, kicked his shins, and went to bite his arms.
Can you imagine the fear of watching your child attack a police officer?
I felt helpless. At least when she was attacking me I had some control over the situation. Now it was completely out of my hands. I had no idea what the consequences would be.
“How long before she calms down?”
“The meds should have taken the edge off by now. If they don’t work it can be hours before she stops.”
“I think we need help.”
He called for another unit, this one with a social worker for a partner.
I knew she was going to be kicked out of the YMCA. I was also worried that I was going to be charged for the damage she had caused. Yet, we hadn’t even gotten her calmed down at a person from the YMCA came in at that moment to tell me. I don’t think I have ever hated anyone more at that moment then that women who couldn’t even wait until my daughter was safe. I still cannot drive by the YMCA without anger at how they acted during this entire situation. How every minor request I had asked for was ignored, requests given to every other special needs child at the center, and then when they pushed her to explode they were so cold and inconsiderate.
Before the second police officer showed up a fire truck came. The first police had called them in thinking that they could transport my daughter some place safe. Had I known I would have told them that it didn’t work that way. What he needed was an ambulance.
In total there were two police cars and a fire truck all for a ten-year-old girl who had been denied any type of services because her autism was not sever enough.
With the second police officer also arrived a social worker. While my daughter was busy assaulting two police officers I walked outside with her.
“I need to get some information.”
“Ok, but first I need to check on my other children.”
“You have more?”
It took me a few minutes to find my other two children. They had moved from the car to a shadier spot. After two years of their younger sister’s meltdowns they knew the expected behavior. At 14 and 13 it was much easier to leave them until their sister was safe.
“Do you have the phone,” I asked my son. At this point they still shared a cell phone.
“Yes.”
“Call Grandma. Ask her to come and pick you two up. If she says that she cannot tell her that your sister is going to the hospital. Tell her I really need her to come and pick you two up. Text me when she has you so I know that you are ok.”
I walked back to the police car and began talking to the social worker. I answered the questions that I had been asked so often that I had them all memorized.
She was diagnosed as PDD-NOS at two. That is Pervasive Developmental Disorder – Not Otherwise Specified. It is part of the autism spectrum.
No she is autistic. Now she is diagnosed with Asperger’s. Well she would be, if it existed anymore. Now they have to just call it Autism Spectrum Disorder.
She has had the meltdowns all her life. They have just gotten worse the summer before third grade. Her school closed down and she tried to kill herself.
No there is no help. We have been turned down by everyone. They won’t help her because she doesn’t have a mental health diagnosis. She is Autistic. Except the people who handle developmental disabilities won’t help her either. Because her IQ is off the chart. She scores in the 99th percentile in her visual ability. That and she is a girl. They tell me she can’t be autistic even though everything says that she is.
The regional center tested her. She tested as autistic. The assessor also told me that Autism is a cognitive disorder. She is wrong. She had so much wrong information. I kept correcting her. She didn’t appreciate it, but I have my own master’s degree. If my daughter was a boy then they would diagnose her, but she isn’t.
I don’t know what to do. We just got kicked out of our house. We have three weeks and then we will be homeless. No there are not any centers we can turn to. She has been turned down for everything. No one will help. She doesn’t qualify. She isn’t severe enough.
I know I understand. They don’t care. No one cares. They just look at her achievement tests and say that it is someone else’s problem. Everyone knows something is not right. It just isn’t their problem.