So I get a letter in the mail. Ava insurance will be kicking her center out of network and she will have to go somewhere else by some random date in February. Can I say I was about to have a nervous breakdown? Of course, I get this letter at 4:45 on a Friday. I am calling the number on the letter like a freak. I finally get someone on the phone thank god.
It was the secondary insurance. I finally could breathe. While I am on the phone Ava transportation drove up. He was trying to take her out of the car with no shoes. They are very nice people, some of the drivers are very young. I yelled him to put her shoes one. All while I am on the phone trying to understand this damn letter.
I called the autism center insurance person. She and I are like rode dogs at this point. She walked hand and hand with me to fight my insurance company to get my baby in the autism center. Her work phone was linked to her cell phone. She said they were in a fight with the secondary insurance. They got a lawyer involved.
Can I say thank you JESUS and God and whatever spirit luck or whatever that help my daughter get in that autism center? I am in constant fear they will try and kick her out. Insurance companies are the enemy. Especially with all the politics around insurance now.
Truth is I want my daughter to talk and be in regular school. I am fighting because she has a true need. I need to find me a man with Blue Cross Blue Shield. I am joking but not really.
A person contacted me to interview me about being a single mother by choice and my Youtube channel. I waited for her to call during our appointment we set up and no call. I am sick of being disappointed. It was known skin off my back really. I was really excited that a major magazine was interested in my story. To be honest it was an email online. I have no idea if this person was real.
I work through a lot of disappointment. When you feel you always get the short end of the stick. Every time I complain, I always feel like shit because I have a very decent life. My child is autistic with seizures, which is a club I would have never joined on my own. I don’t think anyone wants a membership to that club. I saw this on Facebook and I had hope again.
The hope ends when I stop striving. Whatever the outcome I need to continue the fight. The fight for my child and my dreams. Which my child was a dream that came to reality. So her talking and living the greatest life can be another dream come true!!
I had to schedule an MRI for Ava. I pushed it back as far as they would let me. I know this is crazy but I am not looking forward to this test.
They have to put her to sleep. Which scares the shit out of me. I did an MRI in my teenage years. It feels like you are in a coffin. I am praying there isn’t anything wrong with my baby. I hope the seizures will never happen again. Now I am in no rush to put her in her own room. We can share indefinitely. I canceled my appointments because I have so many for Ava. Mine can wait a few months. I know I have to take care of myself. I am taking a lot of time off work for Ava and I need my job. I don’t want them giving me the side eye.
I really like my job. Even though they are about to take our parking and making our park in the neighborhood. Why do I find these job with parking issues I do not know.
I was freaking out about the food I was bringing to the evaluation. I stress over the little things. Finding parking was a nightmare. If anyone knows where Boston Children’s Hospital is located, you know it is a traffic nightmare. The test was three buildings over from the hospital. I went to two different parking lot to finally end up in the correct one.
Ava ended up eating Mac & Cheese and mandarin oranges. The verdict she has no physical issue why she doesn’t eat but four things.
She said her food choices are sensory. She had some dried veggies and Ava brought it to her lips. She didn’t take a bite. She said that was great. Other children wouldn’t even do that.
I also tried to give her pepperoni. She screamed like a mad woman when I put it on her plate. Clearly not going to be one of her favorite foods. We got home in one peace. One appointment down. Many to go!!!
I heard gurgling. I turned on the light and saw my baby. Her eyes were rolled up in her head, she was unresponsive and gurgling. I picked her up and tried to get her to respond. I ran to my mom’s room, screaming something wrong with Ava. She jumped up and started to do what I did, trying to get Ava to respond. She yelled called 911.
First came the police, then fire then EMT. By the time the EMT reached the room Ava had snapped out of it. We took an ambulance to Children’s hospital. My aunt, mother, and cousin showed up to the hospital. I was so glad to not be alone.
They were asking me a lot of questions. My memory was failing me. I was trying to pull it together not doing the best job. The neurologist took a look at her and stated she looked good. I felt like they were going to send us home. Then I felt Ava body go limp and I turned her around and looked at her. It was clearly happening again. Her eyes rolled up in her head and she was unresponsive. They gave her something to stop the seizure and another medication on top.
My baby was asleep for 15 hours. They put electrodes on her head to see her brain waves. They found nothing abnormal. She was not put on seizure medication. They gave us emergency seizure medications. I got one for my house and the other for her school. I feel so beat down by life.
When your kid is not doing well, you are doing worst. Ava is totally back to normal and I am a wreak. #MOMMYLIFE
They started potty training Ava at school. She is killing it. She is doing so well it is crazy. They are going to turn it over to me once they get her to request to go. She did have a bad rash. I talked to the therapist about it. They said it could come from sitting on the toilet so much.
I know they aren’t doing much but potty training. I want to keep her learning, but I want this child potty trained also. I am so tired of changing shitty diapers. The struggle is real. I am thankful that they are going to give me the handoff once she can request. I told them I don’t speak nonverbal. Also, they are watching her all day. One on one therapy. I am usually doing my own thing at home. She is in the living room with all her toys. Her tablet and whatever I can figure out that she likes on the TV. When she wants to cuddle she comes find me and sits on my lap. I make sure she eats and stays hydrated. Other than that I can’t watch Barney and Super Why all day. I would want to kill myself.
So she has officially taken over the living room. She also likes to reorganize things in the refrigerator. We can find the contents placed all over the house.
We went to a little kids amusement park. She had a great time. In the picture, she has her chewy necklace. Which she has been using like a champ these days. I hated her licking random shit. It was driving me insane. The school has helped her use the proper things to chew on. I realized I hate amusement parks. I am the lame parent. These were not big rides but they were making me dizzy. I love the rides I could put her on by herself, or with the other little girl who came with us.
I love having a little autism team for venturing out. My friend and her daughter also had a good time at the park. So now we are going to be home a few Saturdays. I did my part this summer. I really want to get her into a Saturday activity. I am thinking swimming. I still haven’t gotten a bill from the autism center. So I am waiting to see that before I make any financial commitments.
All in all the day was a success. Not something I want to do often, but she enjoyed it and that is all I needed!!!
We did not sit in the house this summer. Thank god!! I would have felt like the horrible mother. Which I do from time to time regardless of our activities.
She is actually not supposed to be sitting in that thing. She was having a great time and I didn’t have to chase her. So I let her sit there until we got kicked out. We went to an indoor water park for a child birthday that goes to her school. When I say she loved it is a total understatement. When it was time to go to the party. Ava fell out. It was the biggest tantrum she has ever had. Screaming, crying, wailing.
Old school mommy wanted to take her out. It is so hard for me to figure out what she likes. It is hard to reason with a child that doesn’t talk. We went to the party. I had to carry her screaming ass the whole time. She is 40 pounds. The mother who invited us felt pity and said I understand you don’t have to come to the party part. Go back to the water.
I was a little embarrassed, but shit what could I do. I brought her back to the water. She didn’t know that is what we were about to do. So she laid on the ground kicked and screamed. I sat there and watched her. We eventually ended up back in the water and she was happy again.
When it was time to leave she didn’t give me much hassle. It is hard to get dressed and then get her dressed. Especially because she is a wanderer. We were in a stall and I felt so tired by the day and handling my child.
When we got home, I wouldn’t give her a yogurt and she laid on the floor and kicked and screamed. I stated to her firmly, I said no and I stepped over her ass and walked out the room. Yes, you embarrassed me in public and I was trying to get a handle on the situation. We are home now and I don’t give a shit. We are not starting this precedent that you get what you want because you kick and scream. I told her therapist at school what happened. He agreed don’t just give in because you will never get the bullshit to stop.
Childhood speech Apraxia
Ava speech therapist at the autism center says she has Apraxia. I don’t know how I feel about it. I am happy if this diagnosis will get my baby to talk. To learn that my baby brain is not working correctly for her to talk is heartbreaking. I wanted some good news. I am not sure if they are good. I asked her if she has seen 3-year-olds talk and catch up with this Apraxia. She said she has. So I am keeping hope alive.
Praying hard to finally hear the words mommy on a regular basis. She has only been in the autism center for two months. It seems that she is doing well. I want things to go faster, but it seems to be going on her own terms.
I have to be patient and let the process work. I am advocating on every front. The OT wants her to get a feeding evaluation at children’s hospital. My baby has a lot of issues. From muscle tone, speech, sensory, feeding. I wish we could catch a break some damn where. I know things could be worse. I am just in my why my brain tonight. Hopefully, it will change tomorrow.
We went to speech therapy today. A weekly appointment I am not loving but have to do. This is her only constant until I get her into the Autism Center. The place we go is a Medical Center. It is called Harvard Vanguard. I like the one stop shop. Everything under one roof. We sometimes have to go to different centers depending on availability. So this center isn’t where Ava pediatrician is located. Where there is ample parking. This center is in the middle of Fenway. If you know anything about Boston that is where the Red Sox play Fenway Park. So they have a parking garage.
When you go upstairs you have to get your tickets validated. It is six bucks, which I can’t complain about. Originally you could pay your six bucks at the receptionist desk. They made a change and now you have to pay with a credit card or cash after you get out the elevator on the floor your car is located.
Now Ava is not the sit there and waits for mommy type of kid. So this damn machine has been a challenge every damn time we go to this place. It doesn’t want to take my credit card. The cash spits back out. It is fine when we are there by ourselves. It gets hectic when people are waiting or there are people trying to get on the elevator. My #Autismmom sensors are up like where is my kid.
So I have my purse, Ava diaper bag with all her stuff we need to roll with. Then this bullshit ass machine doesn’t want to take my credit card. Now that all the credit card companies have rolled out the chip on the front of these cards. This is an issue with this stupid machine. I had no cash. I looked for another card. Well while I am doing this, a white guy. Things went so fast I have no other description except he was white. Open the door for my daughter to walk into the parking garage. My heart jumped out of my chest. Why the fuck would you open a door for a three-year-old. This dude wasn’t even going out the door. I have no idea what his motivation was. My focus was my daughter’s safety. She will go for an exit in a minute. She has no concept of danger which scares the hell out of me.
So the machine was spitting out my parking card as I chased down Ava going out the door. Do you think this mother fucker said sorry? Nope didn’t give a shit that I was about to have a breakdown. I got her barely before she rooming in this parking garage with cars flying by. The Latino people behind me got my card out the machine and handed it to me. I was very grateful. Still, fluster my goal was getting my child in her car seat where I felt she would be safe.
I put her in the car seat and now I can’t find the parking ticket they handed to me. I went through my purse her bag everything is now on the floor of my car. I left her in the car seat rolled down the windows and retraced my steps to find it. The ticket was in the middle of the road.
I got back to my car and tears started coming down my face. What the FUCK can I do this? I am a horrible mother. How could I let this shit happen.? What would happen if I had another baby? I was beating myself up. What type of mother and I.
This happened a few days ago. I still feel like shit. God help me. #AutismMOM