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.
We went to speech therapy today. A weekly appointment I am not loving but have to do. This is her only constant until I get her into the Autism Center. The place we go is a Medical Center. It is called Harvard Vanguard. I like the one stop shop. Everything under one roof. We sometimes have to go to different centers depending on availability. So this center isn’t where Ava pediatrician is located. Where there is ample parking. This center is in the middle of Fenway. If you know anything about Boston that is where the Red Sox play Fenway Park. So they have a parking garage.
When you go upstairs you have to get your tickets validated. It is six bucks, which I can’t complain about. Originally you could pay your six bucks at the receptionist desk. They made a change and now you have to pay with a credit card or cash after you get out the elevator on the floor your car is located.
Now Ava is not the sit there and waits for mommy type of kid. So this damn machine has been a challenge every damn time we go to this place. It doesn’t want to take my credit card. The cash spits back out. It is fine when we are there by ourselves. It gets hectic when people are waiting or there are people trying to get on the elevator. My #Autismmom sensors are up like where is my kid.
So I have my purse, Ava diaper bag with all her stuff we need to roll with. Then this bullshit ass machine doesn’t want to take my credit card. Now that all the credit card companies have rolled out the chip on the front of these cards. This is an issue with this stupid machine. I had no cash. I looked for another card. Well while I am doing this, a white guy. Things went so fast I have no other description except he was white. Open the door for my daughter to walk into the parking garage. My heart jumped out of my chest. Why the fuck would you open a door for a three-year-old. This dude wasn’t even going out the door. I have no idea what his motivation was. My focus was my daughter’s safety. She will go for an exit in a minute. She has no concept of danger which scares the hell out of me.
So the machine was spitting out my parking card as I chased down Ava going out the door. Do you think this mother fucker said sorry? Nope didn’t give a shit that I was about to have a breakdown. I got her barely before she rooming in this parking garage with cars flying by. The Latino people behind me got my card out the machine and handed it to me. I was very grateful. Still, fluster my goal was getting my child in her car seat where I felt she would be safe.
I put her in the car seat and now I can’t find the parking ticket they handed to me. I went through my purse her bag everything is now on the floor of my car. I left her in the car seat rolled down the windows and retraced my steps to find it. The ticket was in the middle of the road.
I got back to my car and tears started coming down my face. What the FUCK can I do this? I am a horrible mother. How could I let this shit happen.? What would happen if I had another baby? I was beating myself up. What type of mother and I.
This happened a few days ago. I still feel like shit. God help me. #AutismMOM
I have been waiting for the approval for the autism center. I really thought they were going to deny it and I would have to appeal. Little did I know it was sitting on someone desk. I was sooo fucking pissed steam was coming out of my ears.
My baby doesn’t have services because of paperwork. I called and some chick on the other end told me it could take eight weeks. Wrong answer!!. Every time I called this company I got a bunch of complaints and excuses. They were fucking with the wrong BITCH they didn’t know it yet.
I reported them to the Massachusetts insurance commission. I told the eight-week chick and all of sudden she wants to contact another department to help me. I wanted to say wait a minute before I said that your ass was telling me it wasn’t’ your department. I got off the phone with her ready to fight.
I couldn’t let this bullshit stand. I comb the internet and found an email address to one of their VP’s.
I wrote a long email about their company was obstructionist. (Yes using the Trump words LOL) She wrote me back in minutes and said she was making calls. Within hours the operations coordinator was calling me. That contract that was supposed to take eight weeks took hours.
You would think the fight ended there. No, it just started. I reported them to the company that holds my health insurance policy. This opstructionist is a subcontractor. They told me the autism center could start treating my daughter there is an approval. They would not do that because this company is notorious for not paying the rates required. I told them my daughter is not going to start somewhere and you end up not working out these rates and she has to leave.
All my emails subject. Autistic 3-year-old denied Services. So the Autism Center was right they wanted to pay 13 bucks an hour. They pay more at Mcdonalds. I was pissed and was not playing any longer. I told them I would contact the Attorney General and I link the article where a company lost a case for restricting autism services. My last line was LET ME MAKE MYSELF CLEAR, I will contact channel five news and talk to anyone who will listen. They approved the rates that were necessary for my daughter to get into the autism center. Why did I have to do all that bullshit? I know there are other families that wouldn’t have fought as hard. I hope this company will think twice about doing this to another family. My daughter is in but doesn’t start for another month. Which pisses me off. They need more staff. If they approved it, in the beginning, she would already be there. God is teaching me patience.
I have joined an Autism group. They have had several Trampoline events. Which the venue opens two hours early for the children to not have to deal with crowds. It is a great event. This is our third time at the same place. The first time was a friends son’s birthday party.
I didn’t have it in me today to jump with her. I was thinking I am too old for this shit. I wasn’t athletic when I was a child. I would describe myself and fat and lazy. Ava wants me to bounce with her. She didn’t have such a great time. There were some smiles so I will call it a success. It is so hard to figure out what a child likes when they don’t talk.
I found myself trying together to stop laying down and licking things. #mommyproblems
I am sure I mentioned this before. I schedule out my blog post. This is to have consistent content. So I wouldn’t’ call my information current I put on the blog. So I am praying my daughter has already started this program while you are reading this post.
Presently we got approved for the transportation. I was sweating that. There were several ways this would have fallen apart. One being transportation. I will be at work when she would need to start the program. I will still be at work when it was time for her to go home.
I have to find a car seat. We will have to figure out who will stick int his car seat daily. I will have to tell them my mom is disabled and that will not be possible for her.
A worry, but the least of my worries. My insurance is trying not to pay. They are presently fighting my insurance company. I need God on my side. I really want her in this program. A friend has the good insurance. Blue Cross and they already gave her a start date.
I don’t know why in my career I have never lucked up when it comes to insurance. I have always had the bullshit policies. My baby needs this service. All this talk of insurance over the T.V.
I have to say I don’t trust a damn Republican or damn Democrat. When you can accept money from major corporations you are bought and paid for. I need to raise this child the best way I can. I will fight with every breath in my body.
The end of the Early intervention. All her therapist came to my house when I was at work of course. I bought a cake for everyone. Which said Ava graduation. No one took a picture for me. When I talked to my mom they already ate it.
When I called them I thought they would have my baby talking in no time. Little did I know when I called them I would be going down the rabbit hole of diagnosis, therapist, Autism, ABA, advocacy, and stress. My life has taken a turned I can’t say I was prepared for. I gained 50 pounds eating out of stress and worry for my baby future.
Even though she has made massive improvements. She still has not spoken a word. Which is the reason I called them in the first place? Advocacy for my child is my number one priority. EI told me they have parents that tell them not to come back when they suggest they get a diagnosis of autism. I pray for those babies that someone will help them.
I took her diagnosis very personal. What did I do wrong? What could I have done better? What did I not pay attention to? Ill prepared for any of this. I had many nights crying in my pillow. Until I met other autism parents, I realized I am not a freak. A lot of these mothers are crying and eating the pain away. With the crying and eating they still get up and take care of their kids and advocate for their success. The tears of the mother are the prayers to god to spare their baby from any struggles or pain. Life is not paved in gold for anyone. We all have problems and things we have to deal with. I wouldn’t advise anyone to gain 50 pounds. If those 50 pounds keeps from a complete breakdown then eat dammit. I am sorry food got me through. I am working on getting it off now. But I am glad I ate than drank. Thank god for that!!!
I did a montage with Ava videos on my Youtube channel. It is so funny how I have this channel, and I don’t have a whole lot of videos of her. I found these old video’s which I wanted to share. I noticed she did look at me when she was young. I have no idea when the eye contact went away. Someone asked me how old was she when this happen to that. All having to do with things of autism. I have to say I don’t know. I wasn’t paying attention. This journey of autism and Ava had all to do with her lack of words. The rest went over my head.
Ava will be three coming very soon. It is very bittersweet. We have had early intervention in our lives for half of her life. She has made some great strides. There has been a barrage of young women coming in and out of our home.
This will be a whole new normal. We had to get used to the home therapy, now we have to get use them not being here.
Ava is on a whole new journey. I am working on putting her in an Autism center. Which has not been an easy mission? I am stressed and worried about when this will happen. I will stop stressing when she finally starts her first day.
My baby is almost three. I haven’t heard mommy yet. Even writing it makes me want to cry. Life has thrown many curve balls. I am still praying for the reasoning and how to deal with some of my realities.
Ava does not have a variety of food that she eats. Not to mention I am not cook of the year. It is so frustrating that she will put random things in her mouth. When I offer her something different from her limited menu she acts like I am trying to kill her. She gives me the stank bitch face. If she could talk I feel she would be saying bitch you can’t be serious. I am not eating that.
I push it in her mouth to give it a try. I am not going to feed her something she really doesn’t want. If she never tastes it she won’t know if she likes it.
Now we are at the point if it is something she likes she will feed herself. If it’s something not on her list of likes, I have to feed it to her. So a few days ago, I got her to eat salmon and mash potatoes. I covered the salmon in the potatoes to achieve this success. She had me chasing her around the house with the food. Surprisingly she opened her mouth. Not how I wanted it to go, but shit I will take that.
I decided she will eat the school food. I want to see if they can get her to eat other things. I will send snacks that she likes if she totally refuses. I know most 2 years old are picky eaters. I also know this has a lot to do with autism.
They say there is a lot of adjustment being an autism mom. I can’t say I really have to adjust, being that she is my only child and the diagnoses have been with us for over a year.
I still have high hopes for my baby. No one is telling me she won’t succeed. The general answer is I DON’T KNOW. Which is an answer I hate? Tell me she is going to be perfect. Lie to me!!!
OK, I really don’t want to be lied to. Sometimes I wouldn’t mind a lie or two. 🙂