Developmentally not five!!

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.

Charity Autism Gala

I was invited to attend the Doug Flutie Jr. Gala. I rejected the invitation at first. Due to my fat ass did not want to shop for a dress. I have been wearing the same yoga pants for two years now. Not the same ones. I bought 10 pairs of the same black pants. Yes, that is me no originality or effort. I am glad I work at a job that the dress code is not that serious. When I first started there, I was a reasonable size.

Then I noticed after working there for a while not many were dressed for the runway. I worked into a uniform of comfort. I have an incredibly boring job. Sitting there all day being uncomfortable is not the move.

So I bought the bullet bought a dress I didn’t like, but it fits. Yes, that was the primary requirement it meets. I purchased a Spanx and a brand new bra. Then I found an essential pair of shoes on clearance at DSW.

I wasn’t feeling my choices, but they were going to get me through. I hate that I am at this point. There was a large part of my life where I really like how I looked in clothes. This is not the case at the moment.

We created gift bags for the event. I put a copy of my book in every gift basket. Then I brought in three copies with me. The event was beautiful. I met a lot of great people.

Laura Flutie spoke. Her words brought me to tears. She said her 27-year-old son said, momma. She cried, and I was crying. I walked up to her at the end of the event. I told her she made me cry because I want to hear mama from my child in the worst way. She was being pulled away in every direction. She looked me in the eyes and said she really wanted to talk to me. I waited for a few minutes. Then thought to myself this is her family event and she has to be very busy. They were taking pictures and talking to her. I walked away appreciating she talked to me at all.

I was talking to the woman who invited me. Laura Flutie comes up with the biggest smile, and we had a great conversation. She made my night. The fact that she came and found me was unbelievable. I gave her a copy of my book. She took a picture with me and the book. I have to say I am glad I didn’t let my insecurities prevent me from this event.

Where have I been???

I have been somewhat consistent with this blog. When I could update it at work, I had the content flowing. Now that time is not my friend, I try and write several posts in one sitting. Well Ava has been going to sleep with Melatonin by 7:30pm. I swear I am so tired I sleep shortly after.

She started waking up in the middle of the night again. So my sleep is all fucked up. Excuse the swearing, but that is all I got at the moment. I am going to do better with this blog. Even though it has been a hobby. I can never seem to figure out how to make money on social media.

This blog was created because I do love to write, even though my grammar sucks. My married ex-boyfriend. (had to say that being men who date me tend to get married) Said if I wanted to get better at writing I need to practice. He created this blog for me and gave me the password.

So years have passed. I was friends with him, but he dropped me because of the marriage. Which I don’t blame him, we weren’t that great of friends. I tend to have a habit of calling my ex for validation. I haven’t done it in years. I am going to keep that chapter closed. Except for the one guy on Facebook that has been married and divorced twice after we dated. He loves finding me on Facebook and reminiscing. I have to say I enjoy it also. Did I make a mistake leaving him? Two ex-wives might say no!! I can’t focus on my past because that is something with no repeat.

I can’t focus on the future because I tend to have a negative outlook lately. I am going to stay firmly in the present.

Speech Apraxia/Nonverbal Autism

Two different speech therapist years apart has stated Ava has speech Apraxia.

Definition: Children with apraxia have difficulty coordinating the use of their tongue, lips, mouth, and jaw to produce clear and consistent speech sounds. … Speech-language pathologists have specialized training in distinguishing a broad variety of speech-language problems, many of which overlap

I wanted to know if there was a diagnosis for this. I kicked up a lot. Emailing her pediatrician the speech therapist at the children’s hospital. All that to find out a child needs about 50 words to be diagnosed with the condition.

I understand but when it is clear many children that are nonverbal have this. Why hasn’t it been studied and protocols on how to treat it been created??? What is the point to say this when there is nothing you can do about it.

Ava has no interest in talking. She doesn’t make an attempt or even tries. The whole speech therapy can be painful when you have a child barely participating. If I had the money and time, I would take her to speech five days a week. So unrealistic but that is how much I am invested in hearing my child’s voice.

 

Boston Children’s Hospital

I took Ava to her follow up appointments with the speech pathologist at Children’s Hospital. She was so impressed with Ava achievement with the speech device. She has only had it for four months. Ava showed her skills in her office. I told her we were having trouble getting the insurance to pay for the device. She agreed to write a letter on Ava’s behalf.

I thought a letter from Children’s hospital would expedite the process. Here intern told me some children have the device for the same amount of time and can’t functionally communicate one-word on the device.

I am so impressed with my child. She advised the next step to pair the device with Ava trying to say words. I am excited about the next steps. I am still praying for words. Autism can come with intellectual disability. It was insinuated that Ava was intellectually disabled. I haven’t gotten her tested. The test is very expensive and an insurance company won’t pay for it, but every 3 years. I am waiting for her to get to school then I will go for the test.

With this speech device, I am starting to feel intellectual disability is not going to be Ava story. There are so many things I have to guess about my child. Words mean so much!!

Didn’t wake up

I didn’t wake up for work. Ava and I were knocked out. My mom came in and said what is happening. I am never late for work. I told her it was Sunday. It was actually Monday. I go to work early every day. I had to rush around and get myself together. If Ava didn’t have so many appointments. I would have called in sick. I am always tired. I called my boss and told her I would be late. I actually made it on time and found a parking space. Parking is so sparse at my job.

In the same week, I forgot Ava’s speech device. I felt awful. Those are her words. That is how they teach her and she communicates. I called my aunt to bring it to her. My aunt is retired and I work too far away to bring it to her. My aunt had it to her by noon. I was so thankful. In the same week, I forgot to charge the speech device. I was having the worst week. Feeling like an awful mom.

I know perfection is not what I strive for. I do want to keep my head above water. Also, be there for my baby.

 

Consolidated Credit Cards

I am getting closer to debt free. If I didn’t start getting frivolous about a year ago, I would almost be there. I bought a few high ticket items that I didn’t really need. I bought a Canon T7i that I barely use. I actually wanted a different camera. They sent me the wrong camera, but it was the more expensive one that I was looking at.

Now looking back I should have sent it back and got the camera I wanted from the beginning. The one I originally picked was more automatic without a lot of settings. I don’t have enough space to use the Canon T7i. I really like the camera and wish I had the time to learn how to use it. My mom actually contributed to the purchase of it.

Then a few months passed, and I bought a canon g7x markii. I love that camera it is easy to use and take great video. I invest in these cameras when I take a break from Youtube. Crazy right!!!!

I haven’t been motivated lately. I was shocked when some of my subscribers called me out about the lack of videos I didn’t put up. I only have 1,600 subscribers. My videos usually get about 60 views on average. I do not have a big following. I would post videos because I enjoy it.  I have created a community.

I don’t like doing video’s when my mother is home. She is usually talking to me, and Ava is running from room to room. I love to do the video’s when I am home alone. Which is only one day a week.

Also gaining the weight doesn’t make me want to be in front of the camera all the time. I am still on a mission to lose weight.

Additional Therapy

One of Ava therapist that has left her school stayed in touch. She offered to babysit or anything I need. I thought that was so sweet. She also lives close to me. I finally decided to take her up on it. I want her to work with me on Ava skills. I hope she is reasonably priced. We haven’t’ discussed the details as of yet.

I have a price in my mind. I don’t want to do it every Saturday. Hopefully every other Saturday. I want to go to the park and have her help me teach Ava how to play in the park. To understand the danger and what she shouldn’t do.

I want to go to lunch in a restaurant and work on Ava’s skills when she is not totally being entertained.

I want to go to the supermarket. Have Ava walk next to the cart and not have to be in the basket.

I want her to help her play with the toys that she ignores.

I am not saying she can make all this happen, but I want to work on it. I am at work when Ava is working on her skills. I need these skills to translate home. I know it will be an expense I didn’t expect, but it is so worth it to get Ava to the next level.

I also want her to show me how to promote speech. I have a lot of plans. Praying she has a reasonable price in mind.

Rebuilding my brand

I am an amateur and taught myself all my social media stuff on Youtube. I don’t think I have a real knack for it. I try my best, but I feel it is time to invest in my brand. I am paying for freelancers to help me. I had a character made of Ava and I.cartoon 2I am going to use it in my Youtube banner. I paid someone to make the banner. I am waiting to see what she comes up with. I might pay for a new intro. Also some thumbnails. I need to invest in quality. I have been using Fiverr.com. So far I have been pleased, and it has been inexpensive. I have been keeping the receipts for my business. I am going to have to do business taxes next year.

I started the business because I didn’t know how successful I would or would not be with my book. I have only made 50 bucks so far with my book. Which I don’t like looking at the numbers. I don’t want the sales to dictate my day.

Everything is a slow process. Due to working and my commute and Ava. Not a lot of time in my life. Not complaining I love seeing my baby smiling face. It makes my day when I get my daily kisses.

Unbelievable!!

My book has some grammatical errors. I knew that. I had paid for editing, but after spending that money, I added to the story and did a lot of revisions. I didn’t have any more money to put into editing. Then Kim Porter died, and I said to myself F*&^k it I am putting it out and doing my marketing. If I die tomorrow no one would read it if it’s on my computer.

I have a following on Instagram. I have 6500 followers. A few people have bought my book. An autism mom bought my book and corrected it and wanted to mail it to me. I don’t have P.O. Box and I was not giving my address out online. She is having me pick it up at her job. I think it is amazing she did that. I didn’t know people like that existed. A stranger bought my book. First, thank you for that purchase. She liked the book but thought the errors took away from the story. She corrected the text and wants to give it to me. If it didn’t happen to me, I would think that is totally crazy.

I am meeting some amazing people along the way of life. I have to say I am also losing amazing people along the way.  I have a marketing plan for my book. I bought 60 copies. Clearly, those books have errors. A friend and confidant made the suggestion when I sent out my marketing letter say the book is a work in progress. I thought that was great.

I love when people give me solutions. I need answers to life, not just critics.