A couple of years ago, I found out I was pregnant with my third child. Baby Number 3 was a complete surprise and to already stressed out family, not entirely great news. We were just finally warming up to the fact ABA (Applied Behavior Analysis) therapists come into our home everyday to help Number 2. Finding myself pregnant and parenting a child with Autism was terrifying and I had major doubts that I can be a mom to all three. I googled why parents chose to have another child after an Autism diagnosis and what I gathered was many do not. I felt like I was making the wrong decision in having a third. But then I came across a blog, a mommy blog. A mother of three, one of which who had a child with Autism. She wrote about how it was hard to parent an autistic child. She would have to explain her son’s behavior to the other children, sometimes even protect them from his more aggressive behaviors. When she had enough, she would lock herself in the bathroom and cry. But she loved her son and that’s all that matters.
After reading her blog, I felt better better about myself as a mom and my decision to have my last baby.
This is why I am blogging. That maybe another mom out there needs to read that it’s ok to cry in the bathroom and not be sure of yourself. There are others feeling the same way. I don’t have all the answers but I am learning to be a better mom each day.
Sharing how ABA can take over the lives of a family on the Spectrum
Applied Behavioral Analysis (ABA) is a topic that I have been wanting to share since I created this trivial blog. This particular post is not about what’s ABA, its methods, and the research behind it. There are plenty of places to get that information. I want to talk about what ABA does to your Autistic child, yourself, siblings, grandparents, teachers, and everyone else who comes into contact with your Ausome kid. I want to tell you what they don’t during your initial meeting with the ABA consultant.
So if I may I will share our insights and experiences since we started ABA about 4 years ago. I haven’t tackled this issue because I am unsure how to present it. So for right now, I will list memories, the good and the bad, tips, and anything else that relates to ABA. You, the reader can make the pro and cons list on your own, since we may not agree what is a pro and con. Remember what applied to us, may not apply to you. Autism is a spectrum disorder, so naturally there is a spectrum of families and experiences. Also, please check back every once in a while, as I will continue to update.
ABA is more than therapy, IT IS A LIFESTYLE! We do in home therapy and it can if you let it will affect everything in your life.
ABA began for us when the owner and consultant of the ABA therapy company we chose came over to our apartment. He explained what ABA is and how they can help. However, I picked up the notion that the consultant was also there to evaluate my son to see if he was a good fit for the program. It made me question if ABA is successful because they work with children who they perceive will benefit from therapy. Is ABA success attributed to excluding autistic children who may not perform well? I am so not a conspiracy theorist, but this left me with an uneasy feeling.
When we first started, I was excited that we were doing something for our child. We were not going to take this lying down! It gave a sense of relief knowing I was taking the right steps toward curing my child.
The first interaction with a therapist occurred shortly after the initial meeting. Two junior consultants came with some supplies. As they were setting up, my son was in the middle of it. He spoke some words and was in a good mood. Then, they sat him at the little to table to work and he shut down.
We had to purchase some supplies for the therapy, like puzzles. I went overboard. I wanted therapy to have a special designated space for my son. I decorated his area much to the annoyance of his team. I just wanted it to be colorful because Autism can be scary.
For the first therapy session, parents/ caregivers brace themselves. Hearing your child scream for the entire two-hour session is absolutely torture. I walked out of the room and went into my bedroom and cried. Parents, you have to be really prepared to let go. Yes, I wanted to run back into the room and rescue my baby, but I didn’t. Therapy won’t work if your child knows that you will intervene. These kids are testing the therapists. The screaming will eventually stop. Yes, it hurts but it’s for the best. However, if you do feel the child is being harmed, by all means intervene. I think a parent can tell when their child screams out of frustration or when they are screaming in pain. Parents, you know your child best.
Why all the screaming? The first targets for your child is that he or she needs to learn to sit in a chair. My child screamed because he was being asked to sit in a chair without a meltdown. My child was able to physically sit in the chair but had to learn to sit when asked to and for how he was asked to.
Sometimes, I feel that I am not allowed to parent my own child. Everyone has an opinion about your kiddo. I always take their opinion into consideration, but sometimes I will go against their advice.
They can really screw up your kids’ hair. My son hate haircuts. The haircut was not even my suggestion as I loved his long brown hair. But the therapists were adamant his hair was becoming an issue with him focusing and wanted to work towards him being able to cut his hair at a salon. Also, the therapists are not stylists and did serious damage on his hair. He had a bald spot right when he took school pictures! A year later, my son still hates getting a haircut. I wanted him to start school with a good, clean look. It took me two days and bruises on my knees to accomplish this without the help of the therapists.
Our current schedule is 5 days a week totaling about 22 hours. Our highest was 40 hours until insurance cracked down on us.
Because of our current schedule, we mostly get done at 6 pm most days and 7 pm on Tuesdays. My son receives his therapy directly after a full day of school. I like that he is engaged in something and not just hiding under Olaf in his bed, but its a long day for my kiddo.
Your child and you will be burned out from all the therapy. Honestly, I think the therapist do too.
I felt and still feel that one parent takes therapy more seriously than the other. Just because your partner is physically present does not mean they are an active participant. If you have a partner that is also committed to your child as you are, consider yourself lucky and I’m happy you are not in it alone.
My son’s therapy witnessed the collapse of my marriage. One therapist was present when my ex moved out. So yeah, they saw me at my worse. And I thank them for focusing on my child and not stopping the therapy.
They will have opinions about you but they for the most part will not express them to you directly.
The ABA line therapists in our experience have mostly been young adults just out of college who are unsure what they want to do and are usually preparing for the GRE or something. So with that being said, there is a bit of a high turnover rate. It’s really a mixed bag of people who just see this as a paycheck and those who are hoping to advance their career serving the Autistic community.
Ok, taking a break…See you soon.
ABA IS NOT CHILDCARE NOR A BABYSITTER! For our therapy, someone needs to present with the kiddo.
And honestly, don’t you want to present and active in the therapy?! I want to learn how to help my kid.
You don’t have to super involved. A parent needs to learn when they should participate and when they need to back off. There are certain targets in which a parent needs to participate in. I think parents should give the child and therapist space to work but kinda hang out in the background. Observe, be a fly on the wall.
Parents be an ACTIVE LISTENER! Listening to how the therapist communicates with your child is so important!!!!! I recently took my son to testing. The psychologist was giving my son directions which my son was not able to understand. However, the targets were very similar to those in ABA. I remembered the therapists’ verbal directions and prompts and used them to assist my son during the test. I was able to get more out him and the psycholgist was able to see more of what my son is capable of.
To be continued…
ABA is really helpful in teaching children the self-help skills. Self-help skills are broken down into steps. Overtime, he has mastered the steps and they are all put together to complete the larger task. He learned to put on his own t-shirt, wash his hands, button his pants, put on and zipper a jacket. We are currently working on teaching him to brush his own teeth and wipe his own behind.
The therapists and I have had some weird conversations. We’ve had to agree on how to put on underwear and a t-shirt. We’ve debated what’s a fruit or vegetable. We were always looking up the correct pronunciations of words and so on. The point is that we all had to be on the same page so they we can teach my son consistently.
We once had part of the team meeting in the bathroom to discuss the steps on how to teach my son how to wipe.
One thing that I love about my son having therapists is that they can sometimes really help in areas that we are currently struggling. For example, when my son starts to throw a tantrums around certain areas, the therapist will help desensitize him to whatever is setting him off. Once we continuously walked past a playground for like 45 minutes to teach my son to walk by without throwing a fit because we can’t stop and play.
An ongoing target is that we are desensitizing him to public restrooms. Hand-dryers and loud toilets can be so overwhelming for autistic kids. So every time we go for walk with a therapist, we always make sure to hit up a local public restroom.
Because we visit local businesses so frequently to work on targets, people recognize us and after a while they start to understand what’s going on. There have been times where I would introduce myself to managers to explain the situation. When we started the hand-dryers in public restrooms, my son would scream. Oh, he would scream so loud! Few times I had to say, “Please don’t call the cops, we are just trying to teach my son how to use public restrooms. ” However, businesses around us have been very welcoming, like Starbucks, Michael’s, the Gap, Target, Hair Cuttery, and Mariano’s. While these businesses have never given us a problem, not everyone inside these places are so understanding. We do get plenty of stares. One time, an older woman laughed at my son. Once in the bathroom, a woman told me my son is like that because of vaccines. People can be pretty ignorant, but these businesses have never turned us away and I am thankful for them.
Having a therapist tag along has made venturing out in public less stressful, even when they are not there. I use their techniques so I can help my son and slowly we are becoming more confident about going out. Therapist can assists in going to the grocery store, going to get haircut, to the doctor, and so on. The therapist helping my son in public has really changed our life. I remember a time where I had to avoid certain areas. Crossing the street was scary because he would throw a tantrum in the middle of the street. Now, it’s gotten so much better and we can walk by a playground without a problem.
Sometimes my AUsome kiddo would burst into tears. He would cry and repeatedly say, “I’m sorry, Mom.” It is distressing to watch and listen to your kiddo cry and unable to understand what made him upset, let alone help him cope with whatever is distressing him. I thought I would never be able to understand what exactly goes through my child’s mind. I think like all parents with kids on the spectrum, we can really only guess what they are thinking and how they feel.
Then today I happened to find The Reason I Jump by Naomi Higashida. A book that was written by a Japanese autistic child when he was only thirteen years old. This book is presented as a series of questions about Autism that Higashida answers from his perspective. Higashida used an alphabet grid to answer these questions. By the time I got to the fourth question, I was already holding back tears. I felt that I was gaining insight into my son’s mind through Higashida words.
I have attempted to read other books on Autism but could never get past the introduction because there was what I perceived to be a sort haughtiness from the author. Many books are written from the parent’s perspective or the book is really about super high functioning Autism. And to be honest, how does reading the history of Autism help me when my child is throwing a f-ing tantrum at the grocery store?!
Higashida explains how autism affects his body but also his self-perception. Higashida explains that people with autism just can’t control themselves and some behaviors are soothing, and they are aware that it does cause distress to those around them. He repeatedly begs us to be patient and keep trying.
Higashida also includes pieces of his own writings. Higashida’s pieces of fiction and his insights on Autism demonstrate the potential of children on the spectrum. It is truly amazing that this wisdom existed in a non-verbal child who was only thirteen when it was written!
Higashida does talk about something that now that has me rethinking how I parent my child and how others are teaching him. Higashida explains that he doesn’t like visual schedules. Visual schedules is something that my son’s team wants to implement but Higashida explains how they are actually more harmful than helpful. But again Higashida does mention visuals may help others on the spectrum but in his experience they were restrictive. I don’t think Higasuida’s words should be taken as a manual on how to approach therapy. I feel his words are more for us as the caregivers to develop more empathy towards our children on the Spectrum.
I think this is a fascinating read not just for parents of kids with Autism but for teachers, aides, therapists, the whole world! I wish I would have read this first, so that I can enjoy knowing a little bit more how my son’s minds works and to be more understanding of his atypical behaviors. Higashida words left me with a recharged determination to not give up on my son but also hope that my son won’t give up on me.
Today, I was finally able to get blog out. I have been trying to write for weeks. If you read my last post, I stated there was drama. There is always drama. And I am still struggling to survive each day. I have so many ideas about things I want to write about or even scrap book but there are not enough hours in a day. And unfortunately, many of my hours are spent worrying how I will ever get things done and truly thrive.
But yeah, just trying to get through this and hopefully I can start writing about topics like autism. I have so much I want to say from a mother’s point of view. But it will have to wait, because I have to get my kiddos and I to bed because the therapist will be here at 8:30 am. Actually, she’s always late.
I finally done it. After months of eyeing the new wine bar in my hood, I finally decided to give it a try. I am not afraid of trying new restaurants or foods (okay, maybe oysters). I have been afraid of eating at a restaurant alone. And fast food joints don’t count. I have been grabbing take-out for months and those places are starting to know my exact orders. I needed to get out of my comfort zone, mostly off my couch and away from Netflix. Well, at least for one kid-free evening. This solitary dining experience was to be different. No kids. No friends. Just me.
As the children were getting ready to leave, I was busy running around getting myself ready. I put on my silky blue shirt dress that I have been dying to wear all summer. Seriously, wish I had worn it more. I added my strappy brown low heel sandals and very minimal jewelry. Minimal makeup as well except, I dabbed on my red Korean lip tint and mascara. Obsessed with K-beauty and this tint does not disappoint. It’s super pigmented and very little goes a long way, just careful not to get it on your teeth. Trust me. And I was ready for my date with myself.
I escorted the kids out and said goodbye. I always give them a few minutes to walk away to give them space to be with him but also to protect my privacy from him. After a few minutes, I see them turn the corner and I know that I am free for the next 48 hours. Actually, less than 48 hours because he needed me to watch them for a few hours. I will serve you that drama in another post.
I walked a short way to the new restaurant. Not many people were inside. The few people there were coupled. It made me nervous because I wanted to get lost in the crowd hoping not to get glances because I would be dining alone. I went in anyway and there was no hostess or server in sight. I had to ask the bartender if I could sit anywhere. Way not to draw attention to myself. I very quickly chose the furthest seat by the window. I wish I chosen a seat rationally because the setting sun was scorching. I had to leave my sunglasses on but I didn’t mind because it offered some security from the stares.
My server finally came over and took my order. I ordered a glass of wine and pasta with mussels. She brought out bread and olive oil before my meal was served. Not only was I grateful for the bread to keep me busy and feeling less awkward but it was so good. Love when restaurants serve rustic, handmade bread.
So yeah …eating my bread and totally feeling fine. And that is when I ruined it. I checked my phone. I wanted to check some emails and I realized I forgot to send one of my kiddos with something. I had already told him that I would send it with him so I need to go on TalkingParents and apologize for the oversight. But then I very quickly received a message in return. I should have waited to check it later but I thought it was something wrong with kiddo #1 since he was very recently diagnosed with asthma. Nope, it wasn’t. He needed me to send #1’s swimsuit.
I sent this message:
” Yes, I will send his things since I provide everything!!!!I will send the swimsuit but you must provide a change of clothes. And thanks for ruining my dinner!!!!”
To my Friend. It’s great to text angry messages that you meant for ex to your friend. It lets out the frustration. So grateful for that friend.
So to sum up my first date with myself: decent food, overpriced wine, Instagram worthy atmosphere, except I am not on Instagram. I am proud that I finally ventured out solo. I didn’t hide behind my kids or a friend. But next time for sure, I will try to leave the phone and sunglasses at home. But definitely wear the Korean lip tint again, it stayed on after all that pasta!
Obviously, I am not a writer. I don’t pretend to be some great, grammatically correct essayist. I am just a mom sitting down at her son’s laptop and typing what I feel at that moment. I reread my posts and self-edit, in fact I just corrected this post like months later. And I have had this blog for a year and only have like 5 posts.
I will commit to this and try to do better. I am still mommy-ing through the chaos one year post- family break-up. And when I can finally sit down at the computer, I will share more of what it’s like to be a single mom of three with one on the spectrum.
This is an ongoing list of all the reasons why I love this awesome kid:
He sleeps in on Christmas morning.
He gives me the best hugs.
He turns his back when hugging every one else.
When he tries really hard, he sticks out his tongue.
He can read!!!
He memorized the bus and train routes.
He skips along in the crisp, winter air likes its the middle of summer.
He likes going to the pool.
He secretly gives hugs to his little sister.
He mistook dog pee for a puddle.
So last night he bit my leg…this is why I shave my legs despite being single.
He is the only kid that I know that likes Charlie Brown.
And on that note, he actually replied to his speech therapist, “Blah, blah, blah,blah.”
He still doesn’t understand the big deal about opening presents.
When I pick him up from school, he literally runs and jumps into my arms.
He will strut around in his underwear…he is totally comfortable with his beach bod, wish I was.
He is a bottomless pit.
Bottomless pit keeps me skinny by stealing my food.
He will sneak his edible rewards from his therapist when they are not paying attention.
He keeps his therapists on their toes.
He can add.
He has really good penmanship.
He likes to cuddle.
He has a sense of humor.
He is afraid of the dark.
He has the quirkiest little dance.
He can count to 15 en Español. I only learned to 10.
He likes to sing.
He misses and asks for his brother and sister when they are not around.
He is emotional and cries.
He tries so hard to play Mario on WiiU.
When he was three, he sang Frozen’s “Love is an Open Door” at the top of his lungs while shopping at Michael’s.
Then he turned it into a duet.
He stims using my nose.
He walks to school holding his Woody doll.
He is just not into sweatpants or anything stretchy…I wish I could get out of my yoga pants.
When he gets himself dressed, he puts his t-shirt on backwards.
Me singing, “Everything is…” He finishes with “Awesome.” That is officially our song!
He fell asleep holding a carrot.
On his first day of Kindergarten, he got lost in the school. And we hadn’t told the school he was autistic, yet.*
Last night, he needed to cuddle.
I love when he says, “C’mon mom.”
So no longer holding onto Woody. He walks around with Olaf.
*So you’re maybe thinking, ‘well that was a lousy irresponsible thing to do by not letting the school know before hand! Shame on you Mom!’ Yeah, f— you! By not letting the school know about the autism was the only chance my son could even attend his neighborhood school.
No wonder why there is the saying “April showers bring May flowers.” We had the most wonderful May. I can’t remember being so happy and hopeful in such a long time. This month was filled laughter and milestones.
Wether we were at our first Cubs game or our first school play, I was determined to do “normal” things. Yes, we were going to do what other families take for granted. And we did. We made it to the 7th inning stretch and sang “Take Me Out to the Ball Game.” We sat in the school auditorium and didn’t get asked to excuse ourselves by the door monitor. We even made a dinner date with friends on Friday, family swim on Saturday, then our favorite diner for breakfast on Sunday.
Of course it wasn’t all perfect, but it was fun. Did my kiddo actually watch the baseball game? No, he jumped on my lap and got uncomfortably close to the people next to him (we need to work on personal space). At the pool, he threw our towels in the water. And on the way to breakfast, he mistook dog pee for a puddle.
We got a lot of stares but they weren’t the mean kind that all mothers dread. My kiddo got glances at the ball park because he sat there holding his Woody doll. And he made people laugh when he ate the piece of pretzel off the ground. He would do his little dance and cheer when everyone else did. He was just so adorably different. On Sunday, my little miss got all the stares when she twirled on the sidewalk with her Jesse doll, with her big brother behind holding Woody.