What Happens Now When The Autism Diagnosis Changes?

The big day arrived. Our wait was finally over. Eight months ago, I made an appointment with a behavioral pediatrician. We already received an autism diagnosis of mild to moderate autism in December 2021. This appointment was to address Jaxon’s behavior. When I first made the behavior appointment in November 2021, Jaxon struggled terribly with aggressive behavior. He was hitting other children, pulling their hair, and in some instances dragging them to the ground. There were days it didn’t matter if the other children instigated him or not. Some of the behaviors were unprovoked. Thankfully, Jaxon was in a private daycare, and the woman was very understanding, and so were the other parents. They all knew we were seeking help for Jaxon.

The day was approaching, and by now, we were well into therapy for Jaxon, both ABA and speech. We also implemented some major food changes due to an insightful stool test we did in February 2022. The stool test revealed major issues, and this shed some light on the behavior issues we were having. We now had a better understanding of why Jaxon seemed irritated at the slightest noises and engaged in a lot of self-injury behavior.

Changes are coming

On February 19, 2022, we started Jaxon on a gluten-free, dairy-free, sugar-free regimen. We also implemented seven supplements, all in an effort to eradicate the yeast from his belly, kill the C-Diff, and three other bacteria that had taken up residence in Jaxon’s gut. The poor guy had been suffering for many months, and we didn’t realize the extent of his suffering until we got the test results back.

Click on this link for more details on the treatment and plan of action. Tips For Eradicating Yeast Belly (Candida)

His integrative pediatrician counseled us on what foods to eliminate and how to proceed. I have written about the details of these instructions and results; you can find those blogs under the autism tab. Look at the drop-down menu and search for Food and Medical. I encourage you to read the articles, especially if your child is experiencing similar behaviors and is nonverbal. You can also click on the links below.

Update on Jaxon’s yeast belly

I am happy to say that as of August 1, 2022, Jaxon has made remarkable progress in his behaviors and speech. We are hearing words and seeing him grow. We can tell the changes in food, along with the addition of the supplements, have benefited him and others. We are seeing a lot less self-injurious behavior, and the attacks at daycare have decreased. This is great news!

So one can understand why I considered canceling our long-awaited appointment with the behavioral pediatrician. I contemplated the need for the appointment now that Jaxon was clearly making progress. It’s still a given that Jaxon is still struggling to reach some 18-month milestones at 3 1/2 years old, but we have seen big gains in other areas and are very happy with the progress.

What else could this doctor tell us about Jaxon’s behavior?

We weren’t interested in putting him on medication because he is so young. We had already been instructed by the neurologist to do intensive ABA therapy because he was too young for medication.

Nonetheless, I decided to keep the appointment. After all, I had waited eight months; I better go and hear what this doctor had to say.

The day finally arrived, and Jaxon and I drove to the other side of town for the appointment. We didn’t have to wait long. I will say that is one thing I have noticed with the specialists – once you get there, they see you quickly.

My expectations were small, and I have since come to a better understanding of what a behavioral pediatrician does. This may be my own understanding, but based on our appointment, it’s what I took from the session.

This doctor looked at all areas of Jaxon’s behaviors, not just physical aggression. She wanted to know everything about Jaxon, going back to pre-natal and birth. She wanted to know about his verbal skills, his walking, his ability to dress himself, and how he responds to commands, feeds, and interacts with others.

We spent almost 95 minutes with the doctor. She was wonderful, very patient, understanding, and thorough. What I didn’t expect was a change in our autism diagnosis.

At the end of the appointment, she looked at me and said, “I am going to explain the reason for my diagnosis today. I do not know what the previous diagnosis was, but here is my diagnosis based on milestones, everything we have observed, interacted with, and discussed today.”

Number three – Severe Autism

I have heard of the “number diagnosis” before, but always with someone else’s kid. I’ve read story after story in Facebook groups of parents coming away from doctor appointments with a number for their child. Up until that point, Jaxon hadn’t been assigned a number. But all that changed as a result of this appointment.

The doctor assured me that Jaxon could move from a number three to a number two or one. But we were to keep doing intensive ABA therapy, speech, and if possible, OT therapy.

The doctor also stated that she felt Jaxon would flourish better in a one-on-one environment as opposed to a school setting with lots of children. She felt he would do better in several areas with intensive one-on-one teaching. This would not be easy, but she felt it could be done.

Needless to say, I felt deflated for a bit, not realizing that this appointment would lead to this outcome. But I am glad I kept the appointment and met this doctor. She is well known in the autism community and highly sought after. She was very sincere and took her time with Jaxon and me as I answered all her questions, and she interacted with him directly.

So, where do we go from here?

I decided to educate myself more about ABA therapy, so I could complement what Jaxon was already receiving. ABA therapy gets a bad wrap for many reasons, all of which we have yet to experience, and I am thankful. ABA has helped Jaxon tremendously and has taught us how to manage Jaxon. I can say with certainty what I was doing before ABA was not working at all and, in some instances, making it worse.

Mary Barbara is a 20-year veteran autism mom who comes from the medical field. She and her husband have a son named Lucas, who is now in his 20s. He has autism, and Mary will tell you that she ignored all the signs when Lucas was a toddler. Only when he was tested and the signs could not be ignored any longer, did she finally admit her son was autistic. The problem back then is little was known about autism, so she had to figure a lot of things out on her own. Mary has since written two books and has training classes on ABA therapy and working with autistic children.

I took her first class, Turn Autism Around, and I have since signed up for her second course. The information Mary shares and the video examples have helped me tremendously. If anything, it is comforting to see other children just like Jaxon and to see the moms of those kids doing their best using these strategies and seeing their children make progress. So, I know what Mary shares in the classes is beneficial. It takes time, and I have learned this is a marathon, not a sprint. While every child is different, much of what Mary teaches can be used for any child.

Let’s wrap this one up

Just because Jaxon received a severe autism diagnosis on June 28, 2022, does not mean he isn’t capable of learning and becoming the best version of himself. We are going to do everything we can to help him get there. It isn’t easy. Most days are hard one way or another. No day feels the same. The behavior is still a struggle, but not near as bad as before. But we believe with continued therapy, food monitoring, supplements, continued training, patience, and lots of love, Jaxon will get to where he needs to live an independent and successful life.

I continue to believe Jaxon is with us for a reason, and we are to honor that reason and do all we can to make sure Jaxon gets the care he needs, even on those days when it hurts your heart and head to see him struggle and you want to give up because it’s too hard. Our goal is to stay the course.

Blessings,

The Teaching Lady Logo

Stool Testing – Part 1

Stool Testing – Part 2

Stool Testing – Part 3 – Sugar

Stool Testing – Part 4 – Signs

Stool Testing – Part 5 – Purpose

Mary Barbera – Autism Mom ABA Help

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