Motherhood was a blessing I prayed for and cried my eyes out to be a part of my life. The struggles of motherhood I was not prepared for. I had an idea of what I was in for. Special needs parenting was a whole different story.
I feel very unequipped for all that goes along with it. I am winging it on most days. I remember when I was in a 12 step program for food. To do the next right thing. Sometimes I can only remain in the day and not focus on the future. The future brings on so much worry. It brings on a depression I cannot deal with and function in the world. Since I am now against depression medicine. Due to the many side effects, I experienced. I need to compartmentalize my life and deal with one day at a time.
My biggest gratitude I have is my mother. She is what keeps us going. She fills in when I am not available and working and in traffic. Ava is her only grandchild and they are best friends.
I am eternally grateful for my mother’s help. I don’t know what I would do without her. I don’t even want to imagine that day. Having a nonverbal child has brought challenges most people would never understand. I love that face that looks exactly like mine. The feeling I won’t be able to protect her terrifies me daily.
I would pimp myself out for a rich man that lives in a good school district. I say that and get a lot of laughs. I am only half kidding.
I am part of a group I had no plans to join. I am an Autism Mom. Since these kids are not interchangeable there a lot of different things that could mean. I have an autistic daughter who is interested due to the population being mostly boys. I have a nonverbal. Which is also a percentage of autistic that is nonverbal.
In the world of autism, there are things only parents in the same situation will ever understand.
My child spends a lot of time on her tablet. I know screen time blah, blah, blah. I let her do what she wants in her free time. I know that is awful, but I am a tired, always busy autism mom.
Between work and traffic and a child that like to wake up at 3-4am. I am beaten down by life. I need a break when we are home. She is content with her tablet. How the hell do people do this with multiple kids?
My mom let me take a 3-hour nap. Those three hours went so quick? I woke up and still was a tire. Yes, that is my life always functioning tired. I am trying my best to turn my social media into an income. I gained 5 Youtube followers in one day and started jumping for joy. I know pathetic, but it’s something.
Ava put her own straw in her juice box. This might seem like a little thing. Autism parents have to celebrate the little things. Her motor skills are not excellent. So the fact that she took the plastic off the straw and got the straw in amazed the hell at me. She is not perfect at it by any means. Shit sometimes I struggle to put the straw in the juice box. It’s a start. Autism parents understand!!!
Ava will be five in a few days. I swear to look at her is looking into the mirror. We look so much alike. I love that she looked like me. I prayed for her to look like me. Five years went by so quickly.
I can’t say I hadn’t pictured what it would be like to have a little me around. I thought she would be talking me to death. I thought she would be hilarious and had me laughing all the time.
Ava is not talking me to death. She isn’t doing anything I dreamed about. She is not developmentally 5 years old. I believe she is a few years behind. Will she catch up, I hope so.
My life has been so unpredictable. I swore when I was in high school fat and feeling less than my peers. I would have never imagined any of the events of my life. Life is stranger than fiction.
My baby has been making progress. Not fast pace, not what I hoped for. Progress none the less. God has humbled me in so many ways. Ava diagnosis has shown me what I am made of.
Granted not always the mom I want to be. I can be jealous of what others do not have to deal with. Jealous of not having a husband. Jealous of not having a regular sex life. Jealous of not living my dreams. Jealous of finding myself so late in life. Jealous of people who do not have my worries.
I try every day to be the mom I feel Ava deserves.
I had to go to my aunt’s house to put up a blind that fell down. Ava woke up at 3am. I worked on the reconciliation at my job for the entire day. Work that was not mine, but I couldn’t stand the arguing of whose job was it, so I volunteered. After eight hours of plugging away and calling the vendors. I think I have gotten closer to a solution to the differences.
Feeling stressed I went to Dunkins and bought things that are not on my diet. I walked right past the Keto options (I need to do better). Then I sat in an hour and a half worth of traffic. I got home Ava had already done her #2. It was all over the place I dropped her in the tub and sprayed her off. She thinks showers are fun. As long as I am not washing her hair. Washed her up and sprayed her up. Then I purchased Mr. Bubbles Slime soap. I spray her down and try and get her to wash. Then I get frustrated and rub in the slime soap. Rince and get her ready for bed. I gave her, all her sleep medications.
I went to my aunts put up her blind came home, and Ava was sitting in the living room playing on her tablet. My mom was sitting opposite her playing on her tablet. I took a shower and put Ava in her bed. Her new thing is going in our room and slamming the door shut. Yes we share (After her seizure I can’t have her too far away from me)
This whole week I was trying to work on my book. I have gotten home late, and things got in the way. I have many Youtube video’s I need to watch. How to set up my facebook fan page? How am I going to market the book? I need to finish reading it over to do final edits. I am a beat down tired as hell Autism Mom.
I bought more scratch tickets. I have a problem apparently. I don’t spend money, but I do spend my play money. It is sad, but I have no energy to scratch them. The moment I closet this laptop. I am headed to bed. Praying Ava will sleep through the night.
I won on one of my scratch tickets. I decided to treat myself to a new Laptop. I really could have used the money to pay bills. I felt the bills would always be there. I never tend to buy things for myself. I have invested in some new clothes. That was out of necessity due to my weight gain. Most of my money is usually spent on Ava.
I love my desktop, but sometimes I want to lay in my bed and work. It has made it very convenient to update this blog on a regular basis. I had to buy a copy of Microsoft Word. I tried to use Google Doc. I have no interest in learning another program. I got a bootleg copy of 2016 Office on eBay.
The only problem is I am always sleepy. My mother blessed me with a nap on Sunday. I slept for four hours. I really felt like I was going to pass out until I had the nap. It brought me back to life. I don’t know how I would handle two kids. I would definitely need a nanny.
Which is the only way I would add another child to this mix? I would need my own place and a nanny. Praying for that all mighty dollar to make that happen. People are shocked I would love to have one more child. Or even two. I had never planned for Ava to be an only child.
What the future holds who knows. God blessed me with Ava. I prayed hard and I really need to get back to praying. I have a woman who sends me bible quotes on Instagram. I am not religious but I swear she is right on time. Each day the things she sends hits the spot. I always write back what I got out of what she sends. I told her I am more spiritual than religious and appreciate what she sends.
Faith can be so hard to have. Blind faith can be the most difficult process of my life.
Ava has had sleep issues since she was 3 years old. She would sleep through the night a few nights a week. I tried everything. Melatonin didn’t work, it would get her to go to sleep but not stay there.
After of year of no sleep, I brought it up to her pediatrician. She said to give her Benydril. I was a little shocked. She said it had fewer side effects then sleeping medication.
Ava had her neurologist appointment for her seizures and I brought up the Benydrill. She looked disgusted like oh no, I don’t like that. So she put Ava on two different sleep medication. One to go to sleep and one to stay asleep. It was a long trial and error. We finally got to a place where it started working.
Now we are back to waking up at 3-4am. She is usually wet and I have to change her diaper and try to get her to go back to sleep. She was sleeping through the night and waking up dry. The potty training has regressed, I have no idea why. It regressed at school and at home.
It is so hard to have a medicated child. Especially being non-verbal, I can’t ask her how the medication is affecting her. It is only 11pm and I feel so tired, due to her waking up at 3am last night. I have contacted the doctor, but she is out. I then called the emergency line to get some to make adjustments to this medication.
The struggle is real!!!
I have been working on this book for two years. I actually have several books on my computer that I have started and have not completed. The book I am trying to get published is about autism. It came to me reading a blog from an autism mom. She stated her son had superpowers and he was here to help the normal people.
My book premise Autism is not a disability it is a superpower. I kept reading my book over and over and I doubt myself in every way. I will agree my grammar is the worst. I have all these stories in my head. If I could be a writer and be able to support Ava and I would have won the lottery.
When Kim Porter Died, P-diddy baby mama at 47 years old, I thought why am I not taking the plunge. What do I have to lose? I only have possible gains. I started working on publishing it on Amazon. I did not realize that is not as easy as I thought. There is a lot I have to teach myself to get the process done.
I need to market the book and have a plan. I have to learn the Kindle direct system. It took me two hours to get the margins correct. I know excel, Microsoft word is not my wheelhouse.
I won 1000 buck on a lottery ticket. I decided to buy a laptop. I sit at a desk all day at work. Sometimes I like to lay in my bed and work on things. I had to buy Microsoft office. I tried to use my old copy that was a no go.
I am hoping to have it out there by February. I will keep this blog posted on the progress. Pray for me doubt can be a killer.
I was so excited to run into a guy I went to high school with. He was still handsome. Still a little corny but I find that attractive these days. No high school influence or peer pressure. The chance meeting made me feel like I found a winning lottery ticket.
I didn’t even consider that my life doesn’t work out in such a positive manner. I was starry-eyed and dreaming of the future. Well eventually after a few dates he was honest with me. He has a depression issue. I don’t want to go through the details, that is his business. I know it is extensive and I can’t add that to my plate.
My hope of a possible relationship was dashed. He tried to convince me that it wouldn’t be an issue. I wasn’t going for it. I am not desperate or in need of any more bullshit in my life.
Dating is not looking optimistic these days. I don’t have a babysitter. My mom watches Ava a lot, and she can be a handful after a few hours. If I didn’t live at home, I feel she would watch her more. Ava is always in her orbit, so there is no time she really misses her. My father would babysit, but he doesn’t live close. He has offered for her to spend the night, but with all her medications that might not be a good idea.
Another autism mom said she had a guy she wanted to introduce me to. She has mentioned it twice. I am not going to push. If she is going to do it, I am not opposed to it. My life consists of my job and my baby. I do miss my ex. Which I really shouldn’t since he strung me along for years.
I always felt that guy was my soulmate. I think I always have had a level of insecurities. When I was with him, I felt like a million bucks. I had a comfort level I never had with anyone else. Will I ever get that again??? I can only hope!
Ava was enjoying swimming. It wasn’t easy to get her use to it. The first few sessions it took her a while to warm up.
Then she started to enjoy it. My aunt paid for six private lessons. We got through those, half the summer has passed. We signed her up for an additional six. We got through four of them. Then the young instructor had a sceduling issue. A few weeks had passed, and she tells me she no longer works on Sunday.
I asked for a refund. I was told they don’t give refunds. Then she offered to provide me with another instructor. I said her two lessons was not enough. It will take two lessons for Ava to warm up to the instructor. They offered me four lessons to make up for the inconvenience.
Several weeks had passed before our new lessons were set up. I get to the pool. Ava was not in the best mood. I got there early to talk to the new instructor about Ava and what she will need.
Those people had no idea what I was talking about. I waited a half an hour, and finally, I go up to someone. Is Ava going to have a lesson today? He said no. I was fuming. I went to the front desk and got a card for the director of operations.
I emailed him as soon as I got home. Demanding a refund. He emailed me back in ten minutes. I was shocked because it was Sunday.
He apologized and said he understood because he worked with the autism community for 10 years.
We talked later in the week, and he stated I would get a refund. When he sent me the reciept, it was the total for all six lessons. I was a little shocked by that.
People don’t understand the hoops I need to jump through for my child. For them to make us wait a half an hour and Ava running towards the pool hard to contain and they didn’t seem to give a shit.
Ava Godmother went to Edaville amusement park with us. It was great I didn’t have to ride any of the rides. I hate amusement parks. She met several of the other Autism mom’s.
She suggested we used her house for a meet and greet. I have to say I was a little intimidated. One of my anxieties is giving an event. I freak out if I think things aren’t going right.
I took the bate, and I am giving an event for Autism moms. No kids allowed. It is for us to get to know each other. We all don’t know each other. A few are moms from Ava school. Then we have a few moms from my facebook group.
I bought the meet already from Bj’s. I have bottles of wine in my car. I have to buy a few more bottles.
I invited 9 and six responded quickly. Sounds like a good number to me. I hope it goes well. Mrs. V, Ava Godmother will be cooking rice and peas. Another mother wants to bring the salad. I bought big bags of chips.
Things are really coming together. Thank God I have Mrs. V to help me. I am not the party planning type. I am the show up with a store bought desert type.
This is way out of my comfort zone.