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 am a part of a nonprofit Autism Sprinter. They are a great organization. They have events in the Boston area and also a Facebook group. Then adopted me. I really have not had time in my life, but I have been making time to be a part of this organization. I created a commercial for them to promote the group. Take a look.
I stay in my fantasies. I feel it calms me to what the future can bring. I always had dreams. I am glad I never lost them. I still want to be the best selling author. Own another home, have another child. My book is on my mind, even though I haven’t looked at it in a few months.
I been so tired and lonely and stressed. Stressed due to Ava illness and the rest is self-explanatory. I have a doctors appointment coming up. I will be asking about antidepressants or mood stabilizers. I don’t know if I need them or what is the difference. This is what I need to discuss with my doctor. I have only seen this woman one other time. I went to the same doctor for 14 years in Georgia.
Now to have a doctor I have met once. I guess it is a blessing to not have many medical problems. I am sure my weight will be an issue. I haven’t had a major weight loss. In the past two weeks, I haven’t eaten carbs. I know I need to control the amount of food and to stop eating late. One thing at a time. Not stuffing my face with cakes, cookies etc was my first stop to weight loss success.
Tonight I will be working on my book. Even if it is just one hour.
Why can’t I have a child that goes to bed early? I am so jealous of my friends’ daughter who is also autistic, but she goes to bed from 7pm-8pm. That would be a god sent. Not my child. She doesn’t go to be the earliest 9:30-11pm. She is running around now. I am thinking it has been a long day. Go to bed as I say it fifty-eleven-hundred times. She will stay down for a min and get back up.
Getting her to sleep is a major job every night. Now she wants to sit in my bed. I know she has a long day. They only give her an hour nap. None of that matters, every night we go through the same bullshit.
Me: Go to bed Ava
Ava: Blaiushtions (translation) No!!!
Me: Get in your bed Ava
Ava: Jamsloing (translation) I said hell no!!!
Pick her out of my bed and put her in hers . Which she climbed out of three times. Now I am sitting next to her bed to make sure she stays in her bed.
Ava: Whimpering (translation) I want to stay up with you. Go get me another yogurt
I win the war by sitting next to her bed for 20min until sleep finally sets in.
All this everynight
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.
No seizure in two months. I thought we beat this seizure thing. We went to Children’s Hospital for the followup MRI. We are doing the intake. Everything seemed great. She was laughing and having fun in the waiting room. We get to the room. I could hear she was about to throw up. The nurse brings us a bucket. I thought damn we have to come back no MRI today she is clearly sick.
Then it happened. I couldn’t believe it. Her eyes rolled back in her head full-blown seizure. I tried snapping her out of it. No luck. Another nurse came in and I told him she is having a seizure. We are in the Children’s Hospital. They jumped into action. They decided to do the MRI. They said if they sent her to the ER she would be right back to get the MRI.
They had to put a breathing tube in due to her throwing up. Then they put her to sleep. The MRI came back clear. Then we find out the EEG had some slowing. Which is what they said last time. We were all hoping it would not happen again. We ended up in the hospital for three days. We left the hospital with seizure medicine that she will have to take for two years.
That hospital was so depressing. So many sick children. There was a three-month-old across the hall and a one-year-old next door. You see all the sad parents on the elevator. I met this young guy there because his brother has cancer. I never want my daughter to be back in that place. I know Boston Children’s hospital is the best in the country. Maybe the world. I appreciate that, but I was so sick of that place after three days. My friend came with toiletries so I could take a shower. Day three Ava no longer wanted to be in the hospital bed. We finally left and Ava is back to business as usual. Like nothing happened. Her mother, meaning me is a stressful crazy mess. Pray for us.
My insurance comes from the GIC (Government Insurance Commission). In there wisdom, they decided to get rid of the most popular plans they have. For the cheaper plans. They were holding a public meeting. I was attending that meeting to bitch about all I went through with getting Ava in the autism center. Well, a week before the meeting in an 8-5 vote they decided to sabotage our insurance choices.
I am assuming they thought this would be incidental and people would suck it up. Well, that is a big no. Uproar happened. There was an article in the Boston Globe. So the meeting I had signed up for weeks ago, now had a lot of people there.
I had to take a bus a train and walkways at 19 degrees. Well, I didn’t get into the meeting because it was at capacity.
A woman was outside with this sign
I sat out there with her for a while. I understand where she is coming from. At this time it seems like the working people are getting screwed left and right. I ended up coming home taking that long ride on the train. I decided to take a cab from the train. I didn’t want to sit out in the cold again. I was pissed I took a day off not to make it to the meeting. I was interviewed by the Boston Globe. So we will see. Due to all the people and uproar, they are recording the vote. Keep home alive and putting my voice out there. A closed mouth does not get fed. I have to fight for what is right.
My depression is taking over. I am not sure if I need a therapist, antidepressants or Church. I need to do something. I did make a plan to make moves this week. I didn’t do anything. It has been a stressful week. I am putting it on my to-do list for next week.
I decided to check out a church. They have a daycare that will take autistic children. I am not taking Ava until I see this place and feel comfortable leaving her there. I need something because things are not going well. I am not happy and feel really disappointed with life. I feel like I will be fighting forever for everything. Pray for me. I am working things out. I am sure it will get better. I am going to be proactive about finding a solution.
The first blizzard of the year sucks. I wish I had a man in my life that wanted to handle our snow issues. Would I pimp myself to not have to shovel? That is a hard yes if I was dating someone.
I wrote on my Facebook WTF with me in my snow gear covered in snow. My neighbor asked the other neighbor what WTF stood for. They had a good laugh when she found out the translation. I have to say it is nice to see people work together.
All this snow makes me miss Atlanta in a big way. My mother being out here by herself would suck. Granted years before she had a lazy ass boyfriend that would help her. Yes, my mother sucks at picking men. I can’t knock her too much, I don’t have one either. So my ass is in a glass house and doesn’t need to throw a stone.
Someone asked if Ava will play in the snow. My daughter won’t keep a hat or gloves on. She barely wants to wear shoes and socks. Plus I left the boots at school for them to help her get over her sensory issues of wearing them. All in all, she will be in the house. Where she likes to walk around with a shirt and no pants. My mother said she is going to be a stripper. She like the least amount of clothes as possible. I am grateful I have a roof and heat on this day. I pray for all that don’t.
Is it odd that men seem more attractive if they live in a neighborhood with an excellent school system? I don’t want to come off as materialistic. It is like meeting the dude with the nice shiny car. I don’t care about the car. I don’t care if he is a blue collar. I care if his property taxes are paying for good schools.
I know people think I am crazy. Shit, I believe I am insane. I have dated men because they have an adorable smile. I am not going to get into a relationship with an asshole based on where he lives. I will say I would flirt a little extra if he lives in Brookline or Newton.
A 60-year-old guy hit me up a while ago. Now I wasn’t as concerned about his age. He also had to be fuckable. I am sorry if I am being TMI. I can’t deal with a man I have no attraction to. I do find older men attractive, so that isn’t the issue. I can’t be with a man with no appeal on my part.
I would have considered this guy if he wasn’t kid adverse. I totally understand why he isn’t into kids. His kids were in there 30’s, and he had grandkids. I wished him the best, and that was that. So I am still selective. Just say a prayer I can find someone living in Sharon. I am keeping my eyes on the prize.