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.
These days success or fame is easier to get then the past. We have social media, viral videos. Even with my small youtube channel, I have been contacted by three reality shows. I don’t even watch reality TV and wasn’t really interested. One did hook me because it was a major network. I figure they weren’t interested. I did all the steps, had my friends they wanted involve go through the steps. Then in the final stages, the woman never called back. She kept me on the hook, I am assuming until they said they didn’t want us.
I have had various people interested in my story. I have done pod-cast there have been articles. My dream is to be an author. I love to write. I am my own worst critic and feel my stuff is crap. I have friends that build me up for sure.
My latest project is going very slow. I had this crazy deadline I wanted everything completed. Which were ridicules? After I paid for editing I realized I needed to start over. When you read your own work and think it is crap, you have to start from scratch. Will I ultimately end up successful in my pursuits? I hope so, not sure, praying it happens. I will still strive regardless of the outcome.
I finally feel like I have purpose and direction. I wish I had it early in my life. It comes when it comes I guess.
Ok, my daughter has been crying on and off for hours. I always give her Tylenol or Motrin if there is too much crying. She can’t tell me if she has a headache. Don’t come for me, I ran this protocol by her doctor.
I don’t know if she didn’t like her lunch. Was there something on TV that scared her. Her tablet isn’t doing what she wants. Or she just needs a nap. I start going through every senerio. Ok, she ate half her lunch. I changed the station on the TV to one of her other shows. I gave her the backup tablet. All still crying. She needs a nap. I keep sending her to her bed. She gets up pulls the tablet of the charger all while crying. I take it away meltdown intensify. Now she stomping falling out into the floor. I pick her 40 pounds up lay her in her bed. She stays for three minutes gets up to go to the bedroom door which is closed ( I know her escape artist). Now she is crying at the door. Ok, come to her boos (her nickname). Now 40 pounds is sitting on my lap like a baby. Then she wants to get off and get the tablet again. Round and round for two hours. Yes, I said two hours. Why two hours because she kept crying. If anything would have stopped her from crying I would have given in at this point. Wore down autism mom. Yes if this child could talk and say I want ice cream I would have given it to her. No, still can’t figure out the problem round and round her bed, the door, my lap. Crying loud stomping feet falling to the floor.
This is why when non-autism parents think your child is spoiled walk in my shoes or shut the hell up. Two hours twenty minutes she is snoring. Peace finally. What was wrong this whole time I have no idea. Round and round in my life with my child. I don’t want anyone’s pity, I want understanding.
I usually find people who have faith in me. I have been told on several occasion when I have a goal I will let nothing stop me. Prior a friend help me publish my first book. She put her money where her mouth was. She put up half the money to self-publish. The was over seven years ago. After that experience, there are many things I would do differently. Also, I am totally indebted to my friend for having faith in me. The book didn’t do well and she never said a word about it. If and when I am truly successful I will thank her in a proper way.
I am a part of a new non-profit for minority girls with autism. I have two family members, one on each side of my family that has grant experience. I have a love-hate with asking anyone to help me with things. They usually don’t share my enthusiasm and say they will do something that never happens. We have worked on the grant and hopefully one of these family members will help us put the finishing touches on the grant. I don’t know if autism hits girls less or they are not being diagnosed. It is a small group of minority girls with ASD.
As I am yelling at my daughter to go to sleep. I remember her school led her into the nap room and she was asleep in seconds. I think this child is a lot smarter than I give her credit. I remember the other ABA that came to my house told me she was playing me. She needs to take a nap, even a late nap. If not she will get tired of 5pm go to sleep and not want to go back to bed at regular hours. Or wake up at some ridiculous time and messing up my sleep for the week.
She is going for it now, but I don’t always win the nap battle. I will fight for a little while but if she is persistent she will win and I will take the hit as a wimpy mom. It isn’t always worth the battle.
I look back on the years I spent in Atlanta. I really enjoyed my life out there. It was the major move of my life. A strange city where I didn’t know anyone. I could be whatever I wanted. I reinvented myself in a way I thought I couldn’t in Boston. I did a lot I met many people. I have lifelong friends. I miss them with all my heart. My life has slowed down in a big way since then. Not in a way I predicted or thought about. Single motherhood can be very lonely. Especially when you have a special needs child.
I miss my Atlanta days. Now looking back I could have done so much more. Even though I did a lot, I feel like I wasted a lot of time. That hit home when I try to take a few minutes to write my blog. Work on my videos, and work on my book.
Time is not my friend. I don’t miss the club life and the casual relationships. I look back and I know things in my past hindered me from having relationships. Rape in teenage years set my life on a trajectory of how I would deal with men. Not saying finding a decent relationship isn’t hard under any circumstance. I have an extra layer of crazy due to my prior sexual assault. There were several men that wanted me in my past life. I have no clue if those relationships would have truly worked out. I know I sabotaged several of them with insecurities that were beyond my control.
I don’t mind a life that is not full excitement. I am introvert and an only child. I can entertain myself. I push myself out the house so Ava has experienced. I need Ava to hit a few more milestones to feel more comfortable to bring her to more things. Right now I am waiting for her to fall asleep so I can take a much needed long hot shower. The little things mean so much to me. My life has come full circle. I don’t regret any of my choices. I might not like the outcomes, but the choices I would not change.