I had to argue with a neurological resident. We were in the Children’s Hospital. You see so many residents it is crazy. Each doctor with a neurological background. Pretty much saying the same thing. They have no idea why Ava has seizures other than Autism, and Delay has seizures more than regular folks.
The first doctor said the seizure medicine Keppra had a side effect. It could affect her behavior. I am thinking ok she not going to talk and have an attitude problem. Which sounds like a lot of crying to me.
He told me we will give you B6 to counteract that. I thought great a vitamin can do that. Then the next round of residents leads by a very young Indian woman. She said we will not give her the B6 and see how she reacts to Keppra. I looked that lady down. I don’t think so. You will give me that B6. It is a vitamin.
Does she know how hard it is to guess what is wrong with a nonverbal autistic toddler? She was given me that damn B6. I was not trying to hear that wait and see bullshit.
Ava doesn’t take pills. I had to buy a pill crusher for the B6. Money well spent. I called the autism center to tell them what happened. Also to have them watch out for any behavioral changes.
Next stop Ava nerologist for followup.
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!!
When the speech therapist said she felt Ava had Speach Apraxia. When I asked to explain further she said she doesn’t have speech Apraxia she has Apraxia like behavior. What the hell that means I don’t know.
I comb the internet as usual. I found many articles that stated fish oil helps Apraxia and late talkers. Of course, I jumped on that information.I bought the Children’s DHA. I had to buy the liquid version. Ava is not going to eat anything she doesn’t recognize. I immediately noticed she started babbling more. Then in a Facebook group, they started to go up from 2.5ml to 5ml. The week I started the increase she was watching her Tablet and Barney Itsy bitsy spider came on. She started to do the movements with her fingers. I am sure to the average person that doesn’t sound like much. For my child it is monumental. She has not imitated up to this point. She doesn’t mind if you do it, she doesn’t want to do it herself.
Then the speech therapist report came in a few days later.
Here is what it said:
Ava had an awesome session today!!! She imitated so many movements (itsy bitsy, lifting arms for yay, swimming and clapping hands) She didn’t imitate sounds but did put her hand on her mouth showing emerging awareness of what I want her to be able to do. She was engaging the whole session.
When I read that I fell to the ground. Every report prior to this was awful. She cried, she was tired, She watches me do this or that but didn’t participate. I cannot let the coincident go that the week I up the fish oil we finally get a good report. We finished that bottle and I moved onto a new brand this woman was pushing on Facebook.
This brand has Omega 6 and other vitamins that were not in the first brand. I am going to go through this bottle and document what I notice. After the bottle is almost gone I will decide if I will continue this brand or go back to the prior brand.
I am so desperate for my child to talk. #AUTISMMOM
I wanted to start with I schedule these post out. So I can keep a constant flow of content. I write them when I have the time or during my emotional dramas. This particular Sunday I woke up with nothing to do. I feel like a horrible parent if I kept my child in the house too often. I called a friend who loves us to come over. I never go over there. I knew her since the third grade. Ava loves it at her house. I have no real reason why I don’t go over there more often. She has four kids. Her oldest is adopted her only girl which she took her in after her mother died. A friend of hers from High School. We went to a very big High School so I didn’t know the girl until years after we graduated. Her daughter loves playing with Ava and watching her. Which gives me a big break. I can actually converse with my friend and feel like I can have some adult time.
Well her youngest is two and we had a cute conversation. He likes Ava to and kept bringing her toys. He would say this is for Ava that is for Ava. I told my friend I wish Ava could talk. She is over a year older than her son. She said don’t compare them. He doesn’t have autism. I know she is right but my soul was sinking hearing this little boy talk to me and ask me questions.
We stayed for several hours. I got in the car ready to go. I cried all the way home. I want to hear my baby voice. I want to hear mommy come from her lips. No one can tell me she will talk. I mean no one will say those words. My now close friend who daughter goes to the autism center with Ava. We put them in together. They told her, her daughter will talk. She is saying her ABC’s and singing songs. She has also been in preschool for a year and is older than Ava. I know these kids are all different. I know I can’t predict the future and no one else can. Please God Please give my baby words. Help her to be successful and be able to handle life on her own. My worries my fears are great. My love is deep, my heart is broken with this word I never dreamed would be a part of my life. AUTISM
Ava has door to door medical transportation to her program. It has not been going smoothly. I made sure to put in the prescription that she requires a female monitor. Which does not consistently happen. The company is run by Russians. They are friendly men that drive the van or car. Ava doesn’t seem distressed or pissed off. Which I have to go off her mannerisms because there is no verbal communication.
I have complained once due to them being late two days in a row. They have been on time as of late. I don’t want to piss off people that have my child or a regular basis. I am giving them some time to get it together. I want my baby safe. I don’t want her to be taken advantage of because of age and lack of language.
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
I have been waiting for the approval for the autism center. I really thought they were going to deny it and I would have to appeal. Little did I know it was sitting on someone desk. I was sooo fucking pissed steam was coming out of my ears.
My baby doesn’t have services because of paperwork. I called and some chick on the other end told me it could take eight weeks. Wrong answer!!. Every time I called this company I got a bunch of complaints and excuses. They were fucking with the wrong BITCH they didn’t know it yet.
I reported them to the Massachusetts insurance commission. I told the eight-week chick and all of sudden she wants to contact another department to help me. I wanted to say wait a minute before I said that your ass was telling me it wasn’t’ your department. I got off the phone with her ready to fight.
I couldn’t let this bullshit stand. I comb the internet and found an email address to one of their VP’s.
I wrote a long email about their company was obstructionist. (Yes using the Trump words LOL) She wrote me back in minutes and said she was making calls. Within hours the operations coordinator was calling me. That contract that was supposed to take eight weeks took hours.
You would think the fight ended there. No, it just started. I reported them to the company that holds my health insurance policy. This opstructionist is a subcontractor. They told me the autism center could start treating my daughter there is an approval. They would not do that because this company is notorious for not paying the rates required. I told them my daughter is not going to start somewhere and you end up not working out these rates and she has to leave.
All my emails subject. Autistic 3-year-old denied Services. So the Autism Center was right they wanted to pay 13 bucks an hour. They pay more at Mcdonalds. I was pissed and was not playing any longer. I told them I would contact the Attorney General and I link the article where a company lost a case for restricting autism services. My last line was LET ME MAKE MYSELF CLEAR, I will contact channel five news and talk to anyone who will listen. They approved the rates that were necessary for my daughter to get into the autism center. Why did I have to do all that bullshit? I know there are other families that wouldn’t have fought as hard. I hope this company will think twice about doing this to another family. My daughter is in but doesn’t start for another month. Which pisses me off. They need more staff. If they approved it, in the beginning, she would already be there. God is teaching me patience.
Still waiting on the Autism Center. The coordinator from the IEP sends me an email that she got into the preschool I wanted her in. I bitched sooo hard for that preschool. The coordinator emailed me as soon as she found out. Which would have been great news until I changed course.
Now waiting for the autism center. I haven’t let go of any of the original services. Always have that plan B. She can not sit in the house all day every day. She will get services one way or another.
I feel the autism center will be the best for her. I don’t know what God has planned for my child.
I have joined an Autism group. They have had several Trampoline events. Which the venue opens two hours early for the children to not have to deal with crowds. It is a great event. This is our third time at the same place. The first time was a friends son’s birthday party.
I didn’t have it in me today to jump with her. I was thinking I am too old for this shit. I wasn’t athletic when I was a child. I would describe myself and fat and lazy. Ava wants me to bounce with her. She didn’t have such a great time. There were some smiles so I will call it a success. It is so hard to figure out what a child likes when they don’t talk.
I found myself trying together to stop laying down and licking things. #mommyproblems