I know everyone gives me praise for doing the most for my child. I do not feel I am doing enough. It is a deep feeling that I need to be doing a whole lot more. I talked to the head of the Autism nonprofit I am a part of. She said me and my friend K the other autism mom. Jumped in with both feet. She said she has met many who do not take charge the way we do.
I am always kind of shocked about parents that don’t’ go the extra mile for there kids. I should not be appalled at all my parents in no way went the extra mile for me.
Ava was the gift God blessed me with. I asked and pleaded with God to make me a mother. He did it. I have to do all I can do to get my child to the next level. I have to stay faithful I will hear words.
The food therapist showed me a chair that I have purchased.Ava doesn’t want to sit too long. Well with this she will have no choice. We are going to get to work. I am going to make a learning time every day. So I can be a part of her success of getting to the next level. My friend K said we can do it together also. Like a little preschool class. I am down with that. Her younger child is typical, and I suggested he is a part. Then he can help the girls to advance forward.
I feel Ava can be doing more. So I am about to put myself in the line of fire to prove that. I can’t not rest and wait for everyone else to make it happen with my child. Now I will admit I have no idea what the hell I am doing. I am going to have to educate myself and hopefully find resources to do this.
My childlike hugs. It is her obsession. I know it has to do with her sensory processing issues. She likes the pressure against her body. She requests hugs a lot. Especially with the young white guys at the autism center.
I went in and the new therapist said Ava took her hugs picture and went to everyone in the autism center and request it a hug. They thought it was the cuties thing. Yes, it is cute. I don’t know how I feel about my child all over people.
We went to the doctor and she tried to get in the male physician assistance lap. My knee was hurting so I couldn’t get her before she made him completely uncomfortable. I made a joke about it, she really likes guys. He gave me a look that made me embarrassed. I don’t know him so I let it go. Every time I go to this urgent care I never see the same doctor twice.
Ava is a happy kid most of the time. She is extremely spoiled and when she doesn’t get her way she acts a straight fool. Which I am not here for that foolishness. I am blessed that most day she has a smile on her face.
It is interesting that she rides with another little girl every day. Ava still looks at her like she is a perfect stranger. Granted the little girl told her mother that Ava is her friend. Ava actually has friends!!!
Ava has been doing a lot of babbling. Please God let it be words on the horizon. The speech therapist said it is the pre-cursor to words. Even with those positive words, no one gives you to much hope. They don’t want to be wrong and get you worked up.
Autism has shown me what I am made of. I look at myself and even though my advocating is on fire. I feel like I am losing myself on regular bases.
I was talking to my boss and she asked me if I cry I see so strong. Tears come out of these eyes. Even though I love the women I met on this autism journey. They are amazing people. I would take all that away and not think twice if I could take away my child’s autism.
I know that isn’t the politically correct thing to say. I love my child, but do I really want to deal with all this entails hell no. I know others have it worst. I still can’t help the way I feel. She gave me the gift of motherhood. My wish and a prayer turned into a child that looks like me.
I love her face and I want to hear her voice. That is my major wish to hear her talk to me. Tell me off, tell me she loves me. I love my baby regardless. I am having a hard day. Forgive me!!!
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.
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.
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
When Ava is not feeling well, I feel horrible. Especially, since she cannot tell me what is wrong. So she has had diarrhea for two days. Which has created a crazy diaper rash? I swear I saw a little blood. All this scared me. I ran to Urgent Care. I was twenty minutes too late. So calling in sick to take my baby to the doctors. I can’t sleep on anything my baby needs.
I put it out to my Facebook group. Someone suggested I apply for FLMA. I think I am going to take advantage of that. I never want my being out for my daughter counting against me.
Clearly, she is uncomfortable. Whipping her is painful. I looked it up on WebMD. Why the hell did I do that? It said she might have an infection. My mother had a death trap car and doesn’t take Ava out by herself. So I have no other options to take her to the doctors. I am a solo mission in many ways. I wish I had a sister. I always wanted a good sibling.
I am still thinking of another baby. Granted the desire seems to fade every day. Especially with the challenges with Ava. God can do anything. I guess I need to pray more.