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!!!
A person contacted me to interview me about being a single mother by choice and my Youtube channel. I waited for her to call during our appointment we set up and no call. I am sick of being disappointed. It was known skin off my back really. I was really excited that a major magazine was interested in my story. To be honest it was an email online. I have no idea if this person was real.
I work through a lot of disappointment. When you feel you always get the short end of the stick. Every time I complain, I always feel like shit because I have a very decent life. My child is autistic with seizures, which is a club I would have never joined on my own. I don’t think anyone wants a membership to that club. I saw this on Facebook and I had hope again.
The hope ends when I stop striving. Whatever the outcome I need to continue the fight. The fight for my child and my dreams. Which my child was a dream that came to reality. So her talking and living the greatest life can be another dream come true!!
I had to schedule an MRI for Ava. I pushed it back as far as they would let me. I know this is crazy but I am not looking forward to this test.
They have to put her to sleep. Which scares the shit out of me. I did an MRI in my teenage years. It feels like you are in a coffin. I am praying there isn’t anything wrong with my baby. I hope the seizures will never happen again. Now I am in no rush to put her in her own room. We can share indefinitely. I canceled my appointments because I have so many for Ava. Mine can wait a few months. I know I have to take care of myself. I am taking a lot of time off work for Ava and I need my job. I don’t want them giving me the side eye.
I really like my job. Even though they are about to take our parking and making our park in the neighborhood. Why do I find these job with parking issues I do not know.
I was freaking out about the food I was bringing to the evaluation. I stress over the little things. Finding parking was a nightmare. If anyone knows where Boston Children’s Hospital is located, you know it is a traffic nightmare. The test was three buildings over from the hospital. I went to two different parking lot to finally end up in the correct one.
Ava ended up eating Mac & Cheese and mandarin oranges. The verdict she has no physical issue why she doesn’t eat but four things.
She said her food choices are sensory. She had some dried veggies and Ava brought it to her lips. She didn’t take a bite. She said that was great. Other children wouldn’t even do that.
I also tried to give her pepperoni. She screamed like a mad woman when I put it on her plate. Clearly not going to be one of her favorite foods. We got home in one peace. One appointment down. Many to go!!!
I heard gurgling. I turned on the light and saw my baby. Her eyes were rolled up in her head, she was unresponsive and gurgling. I picked her up and tried to get her to respond. I ran to my mom’s room, screaming something wrong with Ava. She jumped up and started to do what I did, trying to get Ava to respond. She yelled called 911.
First came the police, then fire then EMT. By the time the EMT reached the room Ava had snapped out of it. We took an ambulance to Children’s hospital. My aunt, mother, and cousin showed up to the hospital. I was so glad to not be alone.
They were asking me a lot of questions. My memory was failing me. I was trying to pull it together not doing the best job. The neurologist took a look at her and stated she looked good. I felt like they were going to send us home. Then I felt Ava body go limp and I turned her around and looked at her. It was clearly happening again. Her eyes rolled up in her head and she was unresponsive. They gave her something to stop the seizure and another medication on top.
My baby was asleep for 15 hours. They put electrodes on her head to see her brain waves. They found nothing abnormal. She was not put on seizure medication. They gave us emergency seizure medications. I got one for my house and the other for her school. I feel so beat down by life.
When your kid is not doing well, you are doing worst. Ava is totally back to normal and I am a wreak. #MOMMYLIFE
I have been in Boston for three years. I don’t have many friends here. It can be very lonely. Which is strange because I am an introvert and don’t mind being by myself. I do have a new friend. The other autism mom I met. I swear I talk to her several times a week. I so miss my girls from Atlanta. I didn’t even see them a lot when I lived there. It was something about always having the option.
I was at work, walking from the convenience store with a co-worker. When I saw him. Driving a very expensive Mercedes truck, looking as sexy as he did in college. Yes, my college crush was sitting in a car out front of my job. He waved to me and of course, I was all in his face like how are you doing. He was on the phone, I walked into work. Ten minutes later he called me and I went outside to chat.
We really went friends in college. We remained friends for years after and use to talk a lot at times then go radio silent when our lives got busy.
It was like old times with his big smile. He is still a complete dog, and I thank god I was not one of his victims. I told him he needed to find me a man that wanted a kid and had some money. I was halfway kidding. He said he would find me someone for sure.
I had a flashback to when I asked him why he wasn’t interested in me in college. He stated he thought of women as a piece of ass and he had to much respect for me. Which I did see it as a compliment.
I told him about Ava autism. He said another mutual friend of ours son has autism. He called him. He moved to Canada years ago. He immediately started speaking French. They are sons of immigrants. Then I told him about Ava autism. He told me his son had a condition that has 250 people in the world has. He doesn’t walk or talk. I immediatley felt so bad for my friend. The friend I haven’t seen over 20 year ago. We all so care free in college. Then we have children that we can’t fix. That we can’t take there issues away. I am sure we both would give anything to make that happen.
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!!!
Childhood speech Apraxia
Ava speech therapist at the autism center says she has Apraxia. I don’t know how I feel about it. I am happy if this diagnosis will get my baby to talk. To learn that my baby brain is not working correctly for her to talk is heartbreaking. I wanted some good news. I am not sure if they are good. I asked her if she has seen 3-year-olds talk and catch up with this Apraxia. She said she has. So I am keeping hope alive.
Praying hard to finally hear the words mommy on a regular basis. She has only been in the autism center for two months. It seems that she is doing well. I want things to go faster, but it seems to be going on her own terms.
I have to be patient and let the process work. I am advocating on every front. The OT wants her to get a feeding evaluation at children’s hospital. My baby has a lot of issues. From muscle tone, speech, sensory, feeding. I wish we could catch a break some damn where. I know things could be worse. I am just in my why my brain tonight. Hopefully, it will change tomorrow.
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 wanted to start with I schedule these post out. So I can keep a constant flow of content. I write them when I have the time or during my emotional dramas. This particular Sunday I woke up with nothing to do. I feel like a horrible parent if I kept my child in the house too often. I called a friend who loves us to come over. I never go over there. I knew her since the third grade. Ava loves it at her house. I have no real reason why I don’t go over there more often. She has four kids. Her oldest is adopted her only girl which she took her in after her mother died. A friend of hers from High School. We went to a very big High School so I didn’t know the girl until years after we graduated. Her daughter loves playing with Ava and watching her. Which gives me a big break. I can actually converse with my friend and feel like I can have some adult time.
Well her youngest is two and we had a cute conversation. He likes Ava to and kept bringing her toys. He would say this is for Ava that is for Ava. I told my friend I wish Ava could talk. She is over a year older than her son. She said don’t compare them. He doesn’t have autism. I know she is right but my soul was sinking hearing this little boy talk to me and ask me questions.
We stayed for several hours. I got in the car ready to go. I cried all the way home. I want to hear my baby voice. I want to hear mommy come from her lips. No one can tell me she will talk. I mean no one will say those words. My now close friend who daughter goes to the autism center with Ava. We put them in together. They told her, her daughter will talk. She is saying her ABC’s and singing songs. She has also been in preschool for a year and is older than Ava. I know these kids are all different. I know I can’t predict the future and no one else can. Please God Please give my baby words. Help her to be successful and be able to handle life on her own. My worries my fears are great. My love is deep, my heart is broken with this word I never dreamed would be a part of my life. AUTISM