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Challenge: Kids with Special Needs

M.o.C.h.A. Six - Angels Among Us

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Excerpt from “Waiting for the Light Bulb: Chapter 7”
“The new location for the ABA clinic was walking distance from my work. Yes, I know. Walking distance. It was beautiful inside not because of the décor or the building, but because of the people. To see and hug that BCBA that I had spoken to a year before was a full circle moment. I found out that both of her children went to the same day school June was in and it was just meant to be that our lives crossed. There were so many therapists! Remember that each child was guaranteed one-on-one therapy so they were all there, young, happy, excited, and motivated. I saw the therapist that had traveled to help transition Isla and she was beaming and proud and I hugged her too. I remember thinking that day, gosh if they all only knew all that happened to open these doors and how they too are being used in Isla’s incredible story.”
Since that day and since the last day Isla attended that clinic, I knew that it would continue to impact many families. I knew that lives would be changed. But I also knew I may not ever know the stories of all the children that entered and exited those doors. So, for me, M.o.C.h.A. six was my gift. She was God’s gift to me for trusting Him so many years ago and for taking that leap of faith to bring this special place into our community. I have decided to write this story in monologue format so here we go…
When my son was born we were living in a trailer in Odessa, TX. It was a sweet, simple life and definitely our “good ol’ days”. He was my third child and when I found out he was going to be a boy I was so proud to give his older brother, who was three years old at the time, a buddy and a friend.
Around the months when he started to crawl I noticed that he never babbled and instead of crawling towards me, he always crawled away from me. He would laugh or giggle sometimes with his beautiful, big brown eyes but no words, at all. He never interacted with his brother and sister. In fact, it seemed sometimes like he avoided them on purpose. At about eighteen months I caught him organizing every single toy he could find in a large U shape on the floor as if they were on display. He began to cry a lot in the evenings and was generally fussy throughout the entire night. Closer to two years old he started walking but with a limp on one leg and that’s when I knew it was time to have a serious conversation with our pediatrician.
By this point we were living in Illinois. I should have mentioned this earlier but we traveled a lot for my husband’s job, so explains the trailer. Anyway, the pediatrician listened to what I had to say and simply replied, “You need to give him more structure. The siblings need to help more and either way boys are lazy and usually late talkers.” Alright.
Soon after this appointment we moved to the Rio Grande Valley and I decided to take my son to one of the only pediatric neurologists that was available which meant three hours in a waiting room. Well, I was obviously the newbie because every single family that was waiting seemed to know it would be a half-day wait because they all showed up with picnic baskets full of food and snacks and games and iPads. This meant three hours of me fighting off my son from every single morsel of food in that room that did not belong to him. After a three hour wait, we were with the nurse and doctor a total of about thirty minutes and left with a diagnosis of autism spectrum disorder and pervasive developmental disorder not otherwise specified. We also left with a prescription for what I like to call, the “medicine from hell”.
My son was four years old when we got the diagnosis and it was time for him to start prekindergarten. He was pissed. Just mad all the time. He cried hysterically but not a normal cry. It was a cry of desperation; sometimes you could hear sadness and even depression in his cry. He was placed in a preschool program for children with disabilities or PPCD classroom with such a kind and beautiful personality as his teacher. She tried everything she could but nothing worked. My son scratched people to the point of drawing blood, he threw stuff across rooms, he was completely nonverbal and was still not potty-trained. School activities were heartbreaking to watch. Like the holiday parties and Halloween parade, they all proved too much for my little boy and I would be so taken aback by the reality of how incredibly hard it was for him to cope with those environments.
This was also the time that food aversions started. The medication made him hungry ALL THE TIME but he refused to eat vegetables and some fruits mainly due to texture. Sometimes even the sight of food made him immediately gag and vomit. The first time we noticed this was when his older sister, my first born, was pouring a bowl of chex mix. As soon as my son saw the way the chex mix poured out of the bag and into the bowl he had immediate responses of nausea and he vomited all over the table. Because of such a limited diet, but large appetite, and in combination with the “medicine from hell” he began gaining ridiculous amounts of weight. I am talking fifteen pounds within a couple of months.
For all of my initial ARD meetings I was always a total mess. Like seriously the very first meeting I was almost shaking as I sat there waiting for it to start. Then the principal started the meeting by asking me to state my name for the record and then she started reading some rules and policies like, “All information concerning a student with disabilities is confidential and may not be discussed with, yada, yada, yada”. Geez, I almost turned around hoping to find Olivia Benson walking in to comfort me because it felt like I was on an episode of Law and Order. I felt so lost and scared and everything was so new and I knew I was not prepared or versed enough in the lingo to even contribute. Ugh, I was just a crying, emotional mess.
By his kindergarten year he was not participating at all. We had been looking forward to his kindergarten teacher who was this really smart, innovative teacher that everyone raved about and she went and had a baby. I know, so rude. So instead, my son had a teacher that had been moved from high school special education to elementary special education and well, there is no nice way to say he was, uh, oh never mind. He was not cut out for kinder, OK?
It was the summer after this kinder year that we decided to take our family to Disneyland. By this point my son was five and I had a new little baby girl who was almost two. There were six of us total. Oh my God we were crazy I know! But my husband is seriously the best partner and friend. We were in it together. We would each take over on the trip and tag the other person in when we were getting tired. It was also at Disneyland that I did something I never thought in my wildest dreams I would do. In fact, I had judged many parents for years when I saw them using this on their children.
Child leashes.
You know what? I had no choice. Now I know that you should never judge. We would have never survived that trip without a major injury or completely losing our son forever if it weren’t for that $19.99 leash that brought on many judging eyes.
Overall, Disneyland was my sons proprioceptive dream. Every single rollercoaster was so sensory stimulating for him and he was so joyful the entire time. Of course, he would get tired and need breaks but it was the last moment of the day that can never be erased from my memory. I remember the image of his silhouette sitting on his daddy’s shoulders watching the fireworks over Cinderella’s castle and in that moment, he was like every other kid.
First grade came around and it was time to meet the teacher. I don’t know how to explain this without sounding rude, but I had a little experience with teachers by this point and well sometimes you can just tell it won’t be a good fit. This particular Life Skills teacher just seemed, kinda sleepy. Man, I know that sounds horrible but from a parent perspective we have just learned that to deal with our kiddos all day long requires a certain level of energy and excitement for life and for the new day. If you are too relaxed or too sweet, our children will eat you alive why lie? This particular class also made it tough for me to feel comfortable because even though there were very few students, some of the students had extremely severe disabilities and over time my son began to mimic them in movement and in speech. It was during this year that for the first time I was brave enough to ask for a shadow or a one-on-one aide for my son. The principal flat out told me, “We don’t do that. We believe the student should be independent.” Wow. Wait, so was he saying I DON’T want my son to be independent? Did he not understand that that is the prayer of my life is to raise this special boy to be independent? Did he not understand that I have panic attacks at just the thought of what will happen to my son when I am gone if he is not independent? So if I want to make him as independent as possible and I still asked for a shadow don’t you think there are other reasons? Safety? Lower his stress level so he will perform better in academics? More attention when he needs breaks or to leave the classroom? To build self-esteem and confidence again? This guy just didn’t get it. It can be very discouraging as a parent to have administration of a school just “not get it.” After that particular ARD where the shadow was denied, the teachers and paraprofessionals started helping my boy with some new hands-on learning projects and they tried to implement new plans and schedules. They had good hearts but my son just could not handle the change, or any change. His sleepy teacher started sending notes home with all of the “bad” things that my son did that day. Awful notes of all his “inappropriate” behavior and big sad faces on his daily report. Sometimes she would even write and ask me, “What should we do? Do you have any ideas?”
I remember thinking, you are the teacher. How can I tell you what to do in your classroom? Isn’t there training for this? Doesn’t your administration help you? Do you even ask your administrators for help? What about the special education department? Surely, they know. They have to know.
It was also during the first grade school year that I caught my oldest daughter checking in on my son during school. I happened to be there dropping off lunch when I saw my sweet girl peeking through the classroom window where my son was. With all my kids I always just stressed to them that he was different and he just needed extra help. We would love him and be patient with him because we were a family. It was that simple. We also as a family decided that we could no longer travel with my husband for his job anymore. We loved to travel…like we LOVED it. All of us. The kids were always excited to live in new cities and have new schools and for us it was one big adventure after another. But after having my son and seeing how he struggled with even the slightest change in the day and seeing how much support he needed, we knew the traveling had to stop.
Then in second grade, my son got out of the house while I was doing laundry and I had no idea. As my home got a little too quiet I remember looking out the laundry room and calling his name. As I quickly checked each room I could feel the blood rush to my feet and I felt like I could pass out at any second. I remember I started to stumble and then I fell, over and over. I just could not find my footing no matter how much I tried. It was the stuff nightmares are made of. My legs were so wobbly I could not get them to move fast enough to run so I just started walking. I was on the street just walking and walking and walking and then I saw a cop car and the officer waved me down. My son was in the cop car. A police report was filed. They interviewed me and my husband. The police in this case were so kind to me. They had to do what they had to do but they were so respectful and handled it all so well I can only thank them. So, let me tell you now you have to ask permission to get into my house and ask permission twice to get out. There are alarms and gates and locks and we are all trapped inside. After this escape attempt we started a medication for attention deficit hyperactivity disorder (ADHD) hoping it would help with his impulsivity. If the first “medicine from hell” brought on dramatic weight gain, this new drug brought on SUPER dramatic weight loss, sleeping problems and now big time aggression especially towards his siblings.
At the start of third grade we switched up the medication and now he was a zombie. A zombie with a bad attitude. He was calmer but became mad all the time and seemed so annoyed with everyone so the doctor’s recommendation was… increase the medication.
I blame myself for listening. We increased it.
At the drop-off for school he started to blatantly refuse to get off the car. After a few rough mornings the school told me they would start sending a male teacher to the drop-off area each day to help me get my son off the vehicle. It was a nice gesture so I was hopeful. BUT, would you believe that the first day that the “male helper” showed up … he strutted out of the building with a big cup full of coffee in his hand? Lord have mercy. I seriously don’t think this is a parent perspective thing. I mean really??? You were asked to help, literally physically lift up a boy that is kicking, screaming and defiant and carry him into school and you come out day one enjoying your piping hot caramel macchiato??? PEOPLE! HELP. A. SISTER. OUT.
I know I mentioned earlier that my son is nonverbal. He is nonverbal about 90% of the time. Since pre-K he would have moments when all of a sudden he would start singing the ABCs and then wouldn’t sing or talk again for weeks. Then when he was three to four years old he started repeating full long and complicated names of dinosaurs and would leave us all dumbfounded. So I knew this kiddo had words in that elaborate brain of his and I knew he had potential. But even then it was me that had to push the school to use PECS (picture exchange communication system) and social stories and a visual schedule and I continued to ask them at every single ARD for a sensory room. But, no luck. Next thing you know I am getting a call to come quick because my son jumped off a chair during class time and split his head open. I found out that there was a refrigerator in the room and due to his medications my son would have these breakthrough hunger pains and they could not keep him away from the fridge. So, instead of removing the fridge from the classroom, they built a corral around it to keep my son out. It was blocked off with chairs they had laid down and boxes and so my son pulled up a chair and tried to jump over the corral.
Then my last straw, the end of my rope came. I pulled up one day to drop my son off for school and as I turned around to smile at him and wish him a good day, the image of him was burned, engraved in my mind. He sat in his seat and he was clutching his seatbelt. He was not screaming or uttering a single sound. He was grasping his seatbelt with both hands and his face and eyes were wild. He looked like a trapped, terrified animal. He was expressing sheer full on terror. Panic. I instantly felt so sick to my stomach I just drove us both home. That day I started to consider homeschool and honestly just plain truancy.
I can only explain what happened next as God’s divine intervention. Our occupational therapist at the time told me about a new clinic that had opened, The Shape of Behavior. It was a full day applied behavioral analysis (ABA) center and was very expensive. We would need to purchase insurance from the marketplace to afford it and the process was crazy long. In April of his third grade year, my son had his first day in ABA therapy.
He was nine, nonverbal and in pull-ups.

First day headed to The Shape of Behavior

The main BCBA told me that potty-training would be first on the list. That was a skill that needed to be learned as soon as possible. I remember smiling to myself and thinking, oh what a funny lady. She really thinks she can potty-train this guy. OK, sweetie go ahead.
They asked me to bring a change of clothes for him so I got a whole suitcase and packed one set of clothes for each day of the week. When I rolled that suitcase into the clinic, one of the therapists said, “Oh that’s perfect! That will be plenty for today.”
I was like, what? Oh man these people were serious!
Within the first week…the FIRST week he started peeing in the toilet. Within one month he was fully potty-trained for peeing. ONE month.
We had meetings every single Friday to update me on his progress with charts and graphs and data and behavior tracking and interventions and lists of reinforcers that were working and … oh I just can’t express to you how joyous you become as a mother when for the first time in your son’s nine years of life he is understood. He is fully understood. The way he thinks, the way he feels, the way he learns, the way he shows up in life, he is understood. And he is respected. My mother lives in Mexico and I call her daily with his progress and she really said it best when she said, “El estaba dormido antes de este lugar. Y ahora el esta despierto al mundo.” “He was sleeping before this place. And now he is awake to the world.”
I have watched videos where my little boy is sitting like actually sitting quietly with one person and laughing and working on small projects or tasks. I have seen videos where he is singing karaoke! I mean really singing with his therapist in a crazy, funny duet.
What used to be just random repeating of movies or songs now has turned into, “want toy” or “want food”.
Now he can play catch! Ha! He can sit through me reading him an entire book, a small book but still! We went to the first wedding ever as a complete family and he lasted until 10:30pm! For the first time he was able to sit through his sister’s band recital as she proudly played her clarinet and this time was able to wave to her ENTIRE family.
Then came Christmas time and it was during one of our Friday parent meetings that one of the therapists told me that he was so hopeful that my son would have more fun this Christmas opening presents because they had been practicing.
I started to weep immediately. For nine years and nine Christmases my son had never opened a Christmas present. I don’t know if it’s the sound of the wrapping paper or the noise of everyone or too many people or too much attention but as all of his brothers and sisters and cousins sit around the tree each year and open presents and laugh and play, my son sits in another room with his headphones.
That Christmas day my son eagerly opened his presents and beamed when he was done. He sat among all of his brothers and sisters and cousins and actively participated in that holiday memory.
Who does that? Who practices with a child every single day for months and teaches him how to get used to the sound and feeling and texture and smell of opening a present so that he too can participate with his family that day?
Only someone who truly gets it. These things that to you seem so simple, so ordinary, I am so blessed that God has given me this gift of seeing EVERYTHING in my life as a miracle.
They are really just our angels.
Now my son gets ABA therapy hours at home too so that he can learn how to shower and dress himself. There are no other words to tell you what the Shape of Behavior and ABA therapy have been for our family.
Here is a little Q&A with M.o.C.h.A. Six.
When you got the diagnosis, what did you need?
A mentor. I was so lost. It seems that everyone should have a sit down face-to-face conversation with someone who has gone through this, even as soon as that first day. I had no idea where to go, who to talk to, what to research. I lost time.
Do you feel loss for the child you envisioned while you were pregnant?
My mom always warned me against putting a face and voice and ideas of the life my children would lead while I was pregnant with them. However, I did dream every day that he would be a great brother and friend to his older brother and for that I do feel loss. But most of the loss I feel is for my son. I long for him to love and enjoy life the way we do, but maybe that does not feel like a loss to him at all.
What is your biggest regret?
That I did not research and find ABA therapy sooner after his diagnosis. That would have spared us many of the heartaches and headaches that public school brought into our lives.
What is your biggest prayer for your son?
That he find somebody that loves him like I do.
How do you cope as a M.o.C.h.A.?
I keep busy with my kids and rarely do I sit down to really process everything because I quickly go too deep and it’s too much to bear.
What would help you right now?
ABA coverage for life. Our insurance changes policies left and right and we continue to get approved for less and less hours. My son CAN NOT go back to public school. It will destroy us.
What do you love the most about your son and what do you want others to know about him?
He is so loving. Most people don’t realize that he is all there. They talk about him like he isn’t but he hears and sees and understands so much.
What has your son taught you?
He has taught me true, uncompromised compassion and daily renewed hope in what is possible.
I want to give a special, deepest thanks to The Shape of Behavior in Harlingen,TX. You are truly our heroes and angels among us. Let’s continue to change lives. All of us. Together.
Just a few days before this story was posted this little boy enjoyed his first family vacation, FULLY POTTY-TRAINED. His momma, M.o.C.h.A. Six, my new hilarious and fun-loving friend, could not be more thankful.

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