I can get discouraged on occasion. Will my child ever talk. Will she ever catch up. There are times when I feel Ava is very smart. Other times I feel like she a four-year-old teenager that doesn’t want to do what I ask. Other times I don’t know what to think. Right now my mother helps so much, I am scared to face life without my mother in the picture. It’s not just child care. It is special needs childcare. Who do I trust with a child that doesn’t talk?
I wish I didn’t have to work and could be more hands-on with Ava. It is hard not only do I work I sit in traffic a lot. I come home tired and stressed. She is a high maintenance child. With all her medical needs, doctors appointment, parenting training. I am beat with the reality of having an autistic child. I find myself jealous of other people and their kids. I know everyone has there problems. I was jealous of a friend. She has a son a year younger than Ava. He talks and is potty trained. The grass looks greener. With that being said my friend is sick and doing through major medical problems. She has several kids and a husband. All this to say life isn’t easy for most people.
I do want to be easier for me. Will she ever talk. No one knows. All I can do is wish and pray she surprises me and actually calls me mom one day.
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.
The day Ava had her second Seizure I was taping her for my Youtube channel. We were at children’s hospital getting the intake done for an MRI. During the intake, she threw up and had a seizure.
It was horrible. I ran across this video twice. Both times watching it, I couldn’t watch it in entirely. Also, I can’t stop myself from crying. When there is something wrong with your child it is so hard to handle.
I have so much stress with things I can not control. I know the serenity prayer. It isn’t helping at the moment. Ava hasn’t had a seizure since she was discharged from the hospital. I think we are going on six months no seizure. We have a neurological appointment coming soon. Also, a developmental Pediatrician appointments coming up. Then After the summer I am going to make a dentist appointment.
While also taking myself to the doctor to find an antidepressant that might help me. As the world turns over and over. Life stops for no one.
During Ava swimming lessons I noticed this guy with a special needs son. I didn’t know how to begin the conversation. What do you say? I saw your son is special needs like my daughter and I am impressed he can swim.
Well, the next week he comes up to me and says Hi (my name)!! I am thinking WTF you know me??
He said yes we went to college together. You were (a person I no longer talk to) friend. I did not remember this guy at all. He said she didn’t have many friends. I thought yes, and there are many reasons why that took me forever to learn.
Well, I didn’t even pay attention to Ava we talked for the entire 40 min. He has two autistic sons. I got his number and thought wow life is stranger than fiction. I have seen this dude four times being an attentive father. I was impressed with him and his son. Then I find out we went to college together.
He is a handsome guy. I don’t think he is interested in me at all. I feel it was hey I know you lets talk kind of situation.
One son talks the other is nonverbal. They are both excellent swimmers. He got them in all sorts of activities. I love it.
Ava Godmother went to Edaville amusement park with us. It was great I didn’t have to ride any of the rides. I hate amusement parks. She met several of the other Autism mom’s.
She suggested we used her house for a meet and greet. I have to say I was a little intimidated. One of my anxieties is giving an event. I freak out if I think things aren’t going right.
I took the bate, and I am giving an event for Autism moms. No kids allowed. It is for us to get to know each other. We all don’t know each other. A few are moms from Ava school. Then we have a few moms from my facebook group.
I bought the meet already from Bj’s. I have bottles of wine in my car. I have to buy a few more bottles.
I invited 9 and six responded quickly. Sounds like a good number to me. I hope it goes well. Mrs. V, Ava Godmother will be cooking rice and peas. Another mother wants to bring the salad. I bought big bags of chips.
Things are really coming together. Thank God I have Mrs. V to help me. I am not the party planning type. I am the show up with a store bought desert type.
This is way out of my comfort zone.
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.
Being a single mother by choice really defined my life. Having a special needs child took over my life. When looking at that little face I can’t imagine life without her. The struggle is real.
Since the diagnosis of Autism, everything is a fight. Even my sanity. I never had so many arguments in my life. Fighting for my child and her improvement has become my sole reason for living. Praying for her to progress is my nightly prayer.
Dating is something I want to do, but need to be realistic in that area. I need a man who wants to talk. Not just meet. I am not taking the time to meet everyone. I have to plan and coordinate to get out for a date.
The traffic I fight to and from work is ridiculous. I have no idea how I would do this without my mom. I don’t even want to imagine that possibility.
In my dreams, I would work part-time and drop off and pick up my own kid. Money makes the world work. A nanny would be a dream come true. Someone to attend to my children needs that I can trust when I am not around.
Well, my fantasies are so much better than my realities. #autismmom
I really thought swimming was going to be a bust. The first lesson she cried the whole half an hour. The second week she was sick. I wasn’t looking forward to going into that pool today.
We get ready she is crying a little as I change her into her bathing suit. I am thinking oh lord. We sit in the bleachers waiting for our lesson. The instructors come up and ask Ava if she is ready. Before they get to the pool she lays on the ground and cries. I walked over and asked her if she needed help.
She says she is ok. She picked her up and they went into the pool together. Ava did great. I am personally shocked. No tears that I could see. The whole half an hour was beyond great.
I needed a win. I know this sounds horrible. When you hear so many things your kids struggle with. It makes you feel so great when something finally works out. Even the woman next to me said she did great. I was so proud of my baby. #AutismMomPride
I am having a hard time with Ava being nonverbal. I am trying to stay optimistic. There is a real possibility she might never gain language. The one thing I know is she is stubborn.
The first week of speech therapy she imitated a few times. Then she did it a few times at school. Then radio silences. We went to the speech today and she got her to repeat one sound. I told I will take that. I rather have something than nothing.
The challenges of life are no joke. My aunt died and I have to say I am still shaken. Here one day gone the next. Life is so fleeting. I thought things were challenging in my life. Then God shows me those things were nothing.
I am blessed in many ways. The struggle is real. I am having a hard time keeping my emotions in check. I call my Louisanna boyfriend. An autism father I met on Facebook. He doesn’t judge and sometimes you have to just blurt out your feelings with no judgment. God brought him into my life right on time.
I talked to him weekly. I don’t have to be the strong Mom when I talk to him. I can complain about all my fears and frustration and he is there. All the men I had in and out my life I never had a man with that level of concern for my feelings. He is a great father and a great friend.
God sent him to me. He understands having an autistic child of his own. That no judgment is so important.
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.