My child is nonverbal. There is no arguing with her, no debate. Yelling also doesn’t work. Well, a few days ago my child didn’t want to put her coat on. It was cold outside. I couldn’t let her win this battle.
The struggle is real, and she is strong. We damn near rolled around the floor to get this coat on. Then we went to a playdate, and we were out at a park. She tried to get naked several times. I had to change a shitty diaper in the car. I can’t wait until she is entirely potty trained. It will be heaven on earth.
She took off her shoes and wouldn’t put them back on. I tried to get those shoes one. I was sweating I was working so hard. I get one on the take the other one off. The other mom said just carry her are we are going to hear all day. She was right Ava is stubborn. The other mom picked her up. I felt terrible she has autistic twins, and her other child was there also. I took Ava from her and carried her to our friend’s backyard. I just let her walk around with no shoes. Fuck it!!!. Sometimes you just have to let life be.
I am concerned she might get sick. But at that moment Fuck it was my answer. Other autism mom gets it.
This morning she put on her coat and shoes with no problem. I was prepared for the fight. I put everything on several minutes before she had to get in the transportation. God gave me this child for a reason. #autismmom
We had the speech appointment. I feel the woman conducting the test made my day. I was early for the test. There was another little girl there. Not sure if she was autistic but I suspected. She came to the appointment with the grandparents.
The little girl waved at Ava. Ava ignored her, but the grandfather was so surprised. He said she never really does that. Can you come home with us? If I had more time I would have talked to him further.
The therapist came out and got us out of the waiting early. We were in the little office waiting for the speech therapist from Ava school to show up. It gave us some time to talk.
She told me the device helps 90% of kids. I said 90%???? She said yes. They don’t all gain speech, but she has seen that. 90% of communication is increased. I am so excited. She basically told me to calm down. She has seen kids talk 4-6 years old and catch up to there peers. That made me feel amazing.
Then I told her how Ava is always watching the creation of the world documentaries that she finds on her tablet. She also watches shows in Spanish. She said she might be interested in planets, and it isn’t unusual that kids with autism watch things in other languages.
The school speech therapist shows up. The test only took an hour instead of the 2 hours that was anticipated. Due to Ava school already working with her and these devices.
So now we are working on the insurance to get the device. Things are looking up!! #autismmom
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.
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.
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!!!
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.
So I get a letter in the mail. Ava insurance will be kicking her center out of network and she will have to go somewhere else by some random date in February. Can I say I was about to have a nervous breakdown? Of course, I get this letter at 4:45 on a Friday. I am calling the number on the letter like a freak. I finally get someone on the phone thank god.
It was the secondary insurance. I finally could breathe. While I am on the phone Ava transportation drove up. He was trying to take her out of the car with no shoes. They are very nice people, some of the drivers are very young. I yelled him to put her shoes one. All while I am on the phone trying to understand this damn letter.
I called the autism center insurance person. She and I are like rode dogs at this point. She walked hand and hand with me to fight my insurance company to get my baby in the autism center. Her work phone was linked to her cell phone. She said they were in a fight with the secondary insurance. They got a lawyer involved.
Can I say thank you JESUS and God and whatever spirit luck or whatever that help my daughter get in that autism center? I am in constant fear they will try and kick her out. Insurance companies are the enemy. Especially with all the politics around insurance now.
Truth is I want my daughter to talk and be in regular school. I am fighting because she has a true need. I need to find me a man with Blue Cross Blue Shield. I am joking but not really.
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!!
When the speech therapist said she felt Ava had Speach Apraxia. When I asked to explain further she said she doesn’t have speech Apraxia she has Apraxia like behavior. What the hell that means I don’t know.
I comb the internet as usual. I found many articles that stated fish oil helps Apraxia and late talkers. Of course, I jumped on that information.I bought the Children’s DHA. I had to buy the liquid version. Ava is not going to eat anything she doesn’t recognize. I immediately noticed she started babbling more. Then in a Facebook group, they started to go up from 2.5ml to 5ml. The week I started the increase she was watching her Tablet and Barney Itsy bitsy spider came on. She started to do the movements with her fingers. I am sure to the average person that doesn’t sound like much. For my child it is monumental. She has not imitated up to this point. She doesn’t mind if you do it, she doesn’t want to do it herself.
Then the speech therapist report came in a few days later.
Here is what it said:
Ava had an awesome session today!!! She imitated so many movements (itsy bitsy, lifting arms for yay, swimming and clapping hands) She didn’t imitate sounds but did put her hand on her mouth showing emerging awareness of what I want her to be able to do. She was engaging the whole session.
When I read that I fell to the ground. Every report prior to this was awful. She cried, she was tired, She watches me do this or that but didn’t participate. I cannot let the coincident go that the week I up the fish oil we finally get a good report. We finished that bottle and I moved onto a new brand this woman was pushing on Facebook.
This brand has Omega 6 and other vitamins that were not in the first brand. I am going to go through this bottle and document what I notice. After the bottle is almost gone I will decide if I will continue this brand or go back to the prior brand.
I am so desperate for my child to talk. #AUTISMMOM
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