Since officially starting down the autism path in December 2021, I have learned several things. Jaxon was diagnosed with mild to moderate autism. Jaxon is now three and a half, but developmentally, he is behind. He is just beginning to do things an 18-month-old does.
One major thing we did after the autism diagnosis was to have his gut checked by testing his stool. The report says Jaxon has a significant yeast belly, C-Diff, and three other bacteria. This explains many of the behaviors we saw and a lack of verbal skills.
Before the gut diagnosis, Jaxon’s vocabulary consisted of roughly 20 words. He is way behind the guidelines for his age. As of today, we are two months into cleansing his gut, and Jaxon says more than 60 words and does not beat himself in the head anymore or pick his lips.
Various Therapies For Autism
Jaxon needs focused therapy for the next several years. The doctor told us the sooner we could start treatment, the better. The more therapy before he turns six, the better his chances of attending kindergarten with other children. We pray for great results as we patiently maneuver through the next few years. Jaxon needs Speech, Occupational, and Behavioral Therapy. For those waiting on a diagnosis or who recently received an official diagnosis, allow me to share the three main types of therapy the doctor prescribed Jaxon to help with his autism. DISCLAIMER: I do not know what therapies are required for your child or any children on the spectrum. I am sharing what we have implemented for Jaxon. We have seen a lot of positive progress, and we are so thankful.
We started with speech therapy. We managed to get speech therapy going before we received an official diagnosis. Jaxon’s pediatrician helped us get started with a speech therapy company that took his insurance. We were approved to go twice a week for a half-hour each time. It wasn’t much, but our schedules didn’t allow for daytime appointments, and evening appointments are usually booked with a waiting list. Since the diagnosis, Jaxon still goes twice a week, but for one-hour sessions, which is a significant improvement.
Jaxon’s speech therapist shared the following description of what she focuses on in Jaxon’s speech sessions. “In speech therapy, the goal for a child who is a late talker or not using many words is to find and create more opportunities for the child to communicate, and it could be through words or signs. Using American Sign Language signs is often easier for kids to understand/imitate, and it serves as a bridge that after a while leads the child to not only use the sign but also say the word. One way to promote or expand vocabulary is through play and reading books. Children have to understand language before they can speak it. Sometimes without realizing it, parents are asking a child too many questions at once or in general, and that puts a lot of pressure on them. That’s why it is so important to model, repeat, use short simplified phrases, and most importantly, wait for them to respond. Speech therapists also work with the child on following directions, imitating actions, sound effects, (car, animal sounds), speech sounds, and words. It’s a process, it takes time, and we provide parents with carryover strategies to use at home.”
While You Wait For Speech Therapy
While waiting for a speech therapist, we created a program I heard about on YouTube. I got the idea from Mary Barbera, a well-known author in the field of autism. She suggested getting a shoebox and cutting a hole in the top to fit 4 x 6 photos. You then take photos of ordinary everyday things in your house, one-word objects of things your child sees or uses every day. You take pictures of familiar people too, one person in each photo.
Then you take the photos, one at a time, and hold the photo up in front of your child, and you say the word that is pictured in the photo three times, clearly and slowly. You move the picture closer to the child as you say the word. The child may grab the photo, and that is ok because you want them to engage the picture and then place it in the shoebox. We did this after dinner each night.
Admittedly, for a few weeks, Jaxon said no words. He grabbed the photos and looked at certain ones intently, but he didn’t repeat the words. It was disheartening, but I remembered that I was also teaching Jaxon what things he may see every day. Jaxon was also learning the names of the people in the photos.
We were told if Jaxon did not start speaking words soon, we would need to begin teaching him sign language so he could communicate.
Thankfully, changing his gut health opened up the vocabulary channel, and he now says words like dinosaur and banana. We never imagined going gluten-free, dairy-free, and sugar-free would profoundly affect Jaxon’s speech. We have a long way to go to clear out the yeast belly, but we are so thankful we are hearing words we can understand. Jaxon may never fully speak sentences like other children, but he can communicate more now than he did in the first three years of his life.
Occupational therapy is the one we have not started yet. We are still working on obtaining a good occupational therapist (OT). We have reached out to a few folks for referrals and have yet to make a connection. It is challenging for our little family to fit in all the therapy Jaxon needs, but we try to do what we can. The most significant focus for Jaxon at this time is speech and behavioral therapy. According to a site I found online, Occupational therapy can help improve communication skills, social skills, and daily living skills. Occupational therapy for autism can also help reduce challenging behaviors, and in some cases, it can even improve cognitive skills.
This is the biggest focus in our house at the moment, with speech being secondary only because of availability. Jaxon is struggling with behavior that includes aggression toward his peers and us. Jaxon does not like the word no, and he does not like to be denied access to something he wants.
I remember when my daughter was his age and denying her access to something she liked didn’t initiate a full-blown tantrum that involved hitting and headbanging.
Part of the behavior problems in Jaxon stem from his inability to communicate what he wants, and while we are trying to get in more speech therapy, it isn’t enough, and it takes time, a lot of time.
I told a friend the other day when she asked how it was going, ‘This is a marathon, not a sprint.’
Behavior therapy is not for the faint at heart. It is hard work, but we have to start now before he gets older and bigger. Many times, we have to let him tantrum in a safe way without saying a word. Jaxon has chosen his room as a safe place to calm down. When he exhibits a calm body, we communicate and try to figure out what he wants. Sounds easy, right? It’s not.
Bring your patience
Working through behavior challenges requires a lot of patience, even when your child is charging at you full speed with his head because you told him he couldn’t have veggie straws for dinner again. Jaxon has no problem expressing himself verbally in those moments, even though most of what he says in anger is illegible. When he is calm, we attempt to teach him how to ask for things, what to ask for, and how to handle disappointment when he doesn’t get his way. But these things take time.
Our therapy of choice for behavioral therapy is ABA (Applied Behavioral Analysis).
What is ABA?
From the online dictionary, “ABA (Applied Behavioral Analysis) is the practice of applying the psychological principles of learning theory in a systematic way to modify behavior. ” Sounds very technical.
While this may make the hairs rise in some people, others like us have found it very beneficial. We have found two excellent ABA therapists. They were referred to us by another family through church.
ABA therapists are not all the same. Our BCBA and RBT take great care of Jaxon, and thanks to them, we have learned so many techniques on how to manage Jaxon. I especially like the parent/therapist discussions where we talk about our week, the difficulties, and the wins we experienced with Jaxon. We hash out the steps of what we should or should not have done when it comes to specific situations and challenges.
This calls for new techniques
To use the techniques I used on my daughter when she was young do not work on Jaxon. His brain thinks completely different than mine, and it’s a huge adjustment trying to think like him so I can manage him and his care. His brain is beautiful and unique and I need to learn how best to relate so I can help him grow into the best version of himself.
We are in this for the long haul and have been slated to have behavioral therapy until the end of 2024 at the earliest. Jaxon may require more treatment after that, but as of right now, he is getting up to 18 hours a week on average.
The neurologist suggested he get up to 40 hours a week of intensive ABA therapy based on his behaviors. We have not been able to make that happen because of scheduling and availability.
To offset the reduced hours he is receiving, we are learning everything we can to help during the off hours when ABA can’t be here or at his daycare.
I know ABA is a sore subject for some, especially those who had experiences with it many years ago, but I don’t believe our ABA therapists act in accordance with the old processes of years ago. A lot more research has been done and they are always looking to improve the process. We are thankful for our ABA therapists.
One of the things that are important to me is educating myself on the various strategies that go into helping Jaxon. It is very time-consuming, and honestly, I am still learning new terms weekly.
There are a lot of rocks to turn over, but I must give myself some grace and remember I am doing the best I can. As I mentioned earlier, this doesn’t get fixed overnight.
Last night as I kissed Jaxon goodnight, I whispered in his ear that his life would help someone someday. His autism will teach many. It’s already teaching me a lot about myself.
I believe the Lord has a purpose for Jaxon being here with us and each day I ask the Lord for guidance and strength to get through. I can’t think years down the road today, because today is all I can handle.
“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:34
“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.” Philippians 4:6
“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?” Matthew 6:25-27
Starting Over At 54 – The Journey Is Hard
Mary Barbera – Autism Mom ABA Help
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