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!!!
When the doctor looks you in the face and tells your child is autistic you life changes at that moment. Regardless of where they are on the spectrum your life changes. I have been told I am the right person to have an autistic child. I call bullshit. I don’t feel like the right person. I feel like a mom willing to do anything for my child.
I have no idea what Ava future is going to be. The success stories are what keeps me motivated. It is what keeps me going.
Now Ava has a speech device. It was approved with the insurance. I get notes home with her doing these great things with this device. These success stories give me hopes that one day I will be able to talk to my daughter.
When I was pregnant or dreaming about being a mother. I would never have imagined any of the challenges that motherhood to an autistic child brought me. Sometimes I really need a lifeline.
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 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.
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.
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.
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.
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.
Even though I have a neurological condition, I do not go the doctors much. I have been depressed lately. I have been on three antidepressants. The first two was crazy side effects. The third made me more depressed. I asked the doctor what are these drugs supposed to do. It won’t take my child’s autism away.
I don’t care that Ava has autism. The things that go with Ava needs and meltdowns etc. takes a toll. On my mind and my view of her future. So yes I cried in this woman’s office. Handing out pills. Before the third perscription, I told her drugs are not for me. I have to deal with my problems.
She then pushed me to try another prescription. Once the doom and gloom came, I left a message to get me the hell off these pills safely I am having dangerous thoughts. The doctor called me and said we will talk about it the next appointments. I canceled that appointment. I am done with antidepressants. I know they help people. They don’t help me at all.
So this added appointments that added to Ava endless appointments. I have to say I still am depressed. It is manageable. I feel a lot better than being on those drugs. I need to lose 100 pounds. That is what I am going to work on going forward. #autismmom