I grew up fat, so none of this should be a surprise. Being overweight at 8 years old to 24. I lost a hundred pounds in my early twenties. Through a 12 step food program. Yes, treating food like it is alcohol actually worked. Granted I could never remain totally clean. I also would stay at a size 14 the highest for years. At times getting down to a size 8.
When Ava was diagnosed I was on my way back to that 8. The 12 step food program wants a lot from me. They wanted me to go to three meetings a week. Talk to a sponsor every morning and commit to my food plan. Also, talk about my issues. It actually worked for the most part.
After Ava diagnosis, I didn’t have the time to commit to the program. It was easier to do when I was single with no commitments. Right now I am a single mother, with a very helpful grandmother. My mother helps in ways I couldn’t repay. I know Ava is her only grandbaby. I also subsidize my mother’s income which helps her to enjoy her retirement. Ava doesn’t stop, some days she is chill, but most days she is bouncing off the walls. I couldn’t ask my mother to watch her more then she does.
All that to say my weight has ballooned and I regret it, but I needed something to cope. Thank God it wasn’t drugs or alcohol because that wouldn’t have helped the situation. I did try three different anti-depressants. The first one I broke out in hives that didn’t go away for three weeks. The second, my eye felt like it was going to pop out of my head. The third one gave me suicidal thought. I called that doctor and told her I was done. I let her know none of these medications will take my daughters Autism away. I know that sounds like I have something against Autism. I do not, I love my baby. I am worried about how the world will treat or miss treat her because she does not talk. I can’t get past that fear. It keeps me up, it makes me nervous, it puts fear in my heart.
I ask God every day to give my baby a voice.
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!!!
We have been going to additional speech therapy on, the weekends. There have been less than six verbal imitations of any sounds. I try my best to not get discouraged. The first session we got two verbal imitations, and now we are down to one each session.
The speech therapist is leaning towards Ava needing a device to talk. I told her I am not at that point right now. I am praying with all my heart that my child will be able to speak to me. Even catch up with her peers.
She just turned 4 a month ago. I have beaten the odds in many areas of my life. I can’t let the faith go now when I really need it.
Ava skills are starting to emerge. Before she wouldn’t imitate anything. Now she has the sign more down pack. Also, I got her to touch her head when I said head and touched mine. I personally never been interested in early education, and now learning the basic of the progression of how children learn.
When I was down in the dumps, I was reading a Facebook post, and they stated there child had no words until they were five. Then I was in a mood again, and a woman left me a comment on my Youtube Channel. She was asking a question about Ava. Then I went to her channel, and she is from London Autistic and talked very late in life. She is in college now.
God has been giving me signs all over the place. There is nothing or no one which will have me give up on my child. Yes, I had to change my perspective of her accomplishments. Right now I can not count her out for any future achievements. I asked God for help nightly. I am working on my faith. Blind faith is the hardest things to obtain. I use to have it. I am working hard on getting it back.
I ended up in a meeting with a lot of people to discuss my complaints. I tried to defuse the situation, in the beginning, to say I love this place, I just have some concerns. Well, there were great outcomes from this meeting.
They will send home better updates. They are sending me a copy of the PEC they are using home. I am going to go in for more parent training. They implemented it right away.
Then there were a few things that happened in that meeting that pissed me off. Granted I had to play diplomate. They are the only game in town with this kind of program. I am in a rock in a hard place.
I was told twice if they weren’t doing what I needed they would help me find someplace else. Also, it was brought up that Ava could be intellectually disabled. Which pissed me off. In this journey of autism. I have asked that question to several therapists. I always got a no. Due to her being there 10 months and that was never stated before. I feel it was bullshit to shift accountability.
Several other things made me upset. I left that meeting feeling beaten and mistreated. It wasn’t anyone working directly with my child. Granted they backed her up which felt happened due to her being the big boss.
I did not let her totally roll over me. What I stated is anyone in this room stating my child is intellectually disabled. She said no we can’t make that diagnosis. Then it shouldn’t have been mentioned in that setting in my view.
I don’t know this woman personally. I have been in this position, and I felt the same way. Some white people do not want to be questioned by minorities. I really thought she was trying to put me in my place. In a way, I took some of the bullshit. I wasn’t going to let my pride destroy what my daughter needs.
I also called them on the carpet for the blanket statements about my child with no validated reason. I said she also equally learn slow. Which they agreed. I still love her center. Even though I was not feeling upper management.
The changes were made I am happy with that outcome. I talked to several parents, and they implemented the changes across the board. So my mouth has made it happen. It didn’t go on deaf ears.
Ava and I went to an Autistic superhero party. Ava spends a lot of time under the table. The highlight of the day. I finally connected with an Autism Mother I noticed at a few events. She had a daughter that is seven. She was parked next to me when I was leaving. The next day we talked for almost an hour and a half. I asked her when her daughter started talking she said six. I mentioned how did it happen. What she said was crazy. She said they were in the park, and she was telling the other kids, her daughter doesn’t talk, but she is really friendly.
The little girl looked at her mother and said MOM I DO TALK. What I meant was that the first thing she ever said. She said yes. Not the only impressive story. At the event, I gave one of the mothers Ava Super Girl costume. It is to small for her so I thought I would gift it. It always feels better to give to someone you see then giving it to Goodwill.
I asked her about her daughter’s eating habits. She said her daughter is very picky. She only likes peanut butter sandwiches with peanut butter one side of the bread not made into a sandwich. I was confused. I asked how did you figure that out if she doesn’t talk. She said she was making a peanut butter and jelly sandwich. Right before she was to merge the two parts the little girl who does not speak said I don’t want that.
I was like damn. The mother almost fell to the floor. We don’t know what amazing children can do. I am waiting for those words out of my child’s mouth.
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.
We went to a little kids amusement park. She had a great time. In the picture, she has her chewy necklace. Which she has been using like a champ these days. I hated her licking random shit. It was driving me insane. The school has helped her use the proper things to chew on. I realized I hate amusement parks. I am the lame parent. These were not big rides but they were making me dizzy. I love the rides I could put her on by herself, or with the other little girl who came with us.
I love having a little autism team for venturing out. My friend and her daughter also had a good time at the park. So now we are going to be home a few Saturdays. I did my part this summer. I really want to get her into a Saturday activity. I am thinking swimming. I still haven’t gotten a bill from the autism center. So I am waiting to see that before I make any financial commitments.
All in all the day was a success. Not something I want to do often, but she enjoyed it and that is all I needed!!!
I have people in my life who are angels. They might not realize it. I should spend more time telling them. I have a friend who reads my blog religiously and sends me a text about my updates. My friends who haven’t forgotten about me when I left Atlanta. A lot of folks forgot about me when I first left Boston and moved to Atlanta. Ava god mother who I met in 1997 at my first job out of college.
She is one of the few who stay in contact and visited and her friendship never wavered even after I left my place of birth. She still is inviting and enjoy my friendship as I do hers. My friend that came to visit me and wouldn’t take no for an answer. We enjoyed Boston in a way I never have before.
The woman I met in an Autism Group who took it upon herself to guide me in the struggles of being a #autism mom. My friend and I (my other autism mom buddy) bought this woman a gift. I tried to compliment her in several ways. She is so humble she never really accepts my compliment. She is the reason Ava is at the autism center. She guided my friend and I with so many resources. How do you THANK a person like that? How do I show God god blessed me by bringing her in my life at the right time? I bought her a plaque. I cropped out her name on the top.
We are also going to give her 100 Visa gift card. She deserves ten times more. My mother and my aunt. They drive me crazy, but their love for me has never wavered. Their love for Ava is strong. They are my number one angels!! They are my up front village. That makes my journey in motherhood not so lonely.
I have some money in the bank. I was thinking of treating myself. That is so hard for me to do. I have no idea why. I go to work every day. I am always in the world of adulting. Thinking of my responsibilities have always been a big part of my life.
I still have a sizable debt. I have been doing great to lower it.
I wanted a new camera for my youtube channel. Then I talk myself out of it. I don’t have a big audience. I haven’t made as much money as I am investing into youtube.
Then I started to think. It is very nice to have people watch my video and comment. The truth is I like doing youtube regardless of my subscribers. If I didn’t I really wouldn’t have gotten this far with it.
Then I want a new computer. My computer has Vista on it. That shows you how old it is. Then I think there is nothing wrong with the computer. It works fine. I don’t do much on it really. How much is a new computer needed? It is hard for me just to buy these things because I want them. There is no real need for either thing.
There hasn’t been something I wanted so bad in a long time. Other than my baby. That was the last thing and only thing for a substantial part of my life that I wanted in a bad way.
I am not very materialistic. I am not into clothes. I wish I did my makeup more often. I have a lot of it. I just don’t have the time in the morning. I am so low maintenance. I recently went to the nail salon. My toes and nails look wonderful. I should do that more often. The problem is I can’t take Ava with me. She would not do well with me indisposed. She is not the sit their type of child. I didn’t want to ask my mother. She watches her so much. I broke down and asked her when my toenails were catching on my sheets. Yes so embarrassing. They were long just jagged for whatever reason.