Our Autism Story: The Beginning and Our Life Now

Our Autism Story: The Beginning and Our Life Now

Our son, Baylor, has high functioning autism, otherwise known as Asperger’s syndrome. It has been a challenging and emotional journey. Chris and I made a decision that we would be open about his autism story for several reasons 1) To bring hope to others facing similar struggles and let them know there is a community out there to help  2) To give a greater understanding about these kids, especially to those who have no experience with this kind of diversity and 3) To show that God is still performing miracles in our life everyday.

This is our autism story; from early days to where we are now.

THE BEGINNING

Baylor was a happy, healthy baby and met all his milestones on time or early. Everything was fine until he was 10 months old when he had a severe reaction to peanut butter. We ended up in the emergency room. For the next 2 years, we avoided anything with peanuts or tree nuts. He ended up outgrowing his peanut allergy which is a true miracle. It only happens to 20% of children. (sometimes I wonder if a weak immune system is tied to autism somehow?)

When he was about 2, we started noticing that he would run away from us in public places, having no fear or awareness of his surroundings. We assumed it was normal and attributed it being “active”. He didn’t listen very well either. His sister, Loxley, was born when he was 2 1/2.  Other than him being a little standoffish to her, there were no red flags, tantrums or meltdowns.

Baylor’s behavior became more challenging as he reached 3 years old and wasn’t clearly expressing himself. There was very little back-and-forth communication. It was difficult for us because we didn’t know what was normal behavior and what wasn’t. When we told the pediatrician about our concerns, she brushed it off saying, “boys tend to talk later” and said “you might want to think about putting him in daycare for socialization”. So we did.

Baylor was relatively healthy (not sick often) and active, climbing, and meeting the normal physical milestones.

By age 4, he was FINALLY potty trained (whew!) and began to add sentences to his vocabulary. He began to catch up with the help of a speech therapist. We noticed his tone was higher pitched than his peers and thought it was odd.

At the recommendation of his speech therapist, we had him evaluated with our local school district to see if he qualified for any services. They determined that he had a speech delay, but did not qualify for occupational therapy. We also met with a child psychologist to get him evaluated for autism. This psychologist was supposed to be the best in Birmingham when it came to children with autism. After he spent time with Baylor and completed a questionnaire, he said, “your son is not going to be severe enough to qualify for any services, so I would be hesitant to put a label on him for fear of people lowering their expectations of him.”

So we carried on. We were relieved…. temporarily.

When Kindergarten started, his behavior was a distraction in the classroom. He would overreact about simple things (like the teacher using a different marker on the dry/erase board) and walk out of class when he was asked to do something he didn’t want to do. He would hide and not respond when his name was called, which was a big safety concern.

Chris and I were both working full time and were now expecting our third child. We were overwhelmed and didn’t have many answers for the school.

There were certain things that stood out to us about Baylor. He was an extremely picky eater. He wouldn’t respond when we called his name at home, unless we raised our voices. He was a little “spacey” and talked to himself. His younger sister was only 3 but she seemed to understand more than he did.

As he progressed through Kindergarten, Baylor’s behavior became increasingly inflexible. We had him evaluated again, this time through the school. At the end of his Kindergarten year, he was diagnosed with autism spectrum disorder. This was an educational diagnosis, not a medical diagnosis. When we told his psychologist about this, he agreed to give Baylor a medical diagnosis of “mild” autism.

This is when I decided to leave work and stay home full time, to dedicate more time and energy to get him what he needed.

He started first grade with an IEP (Individualized Educational Plan) with additional resources to help him. He was ahead of the class academically, but he didn’t enjoy “doing hard work” (in his words). Unstructured play was very difficult as he would have sensory overload and would not follow directions. He quickly learned that eloping from the classroom or hiding under the table earned him a trip to the Special Ed classroom where he could relax (less stimulation).

Baylor also had trouble interacting with other kids. He wanted to play on the classroom computer a lot. He would wait to go to the bathroom so long that he had frequent potty accidents.

SEARCHING FOR ANSWERS

Chris and I attended the National Autism Conference in September ’16 and gathered a lot of information. We spoke with many helpful parents with kids with the same diagnosis. They suggested we find a doctor that specialized in autism and also look into testing for the MTHFR gene.

We found an autism specialist within 2 hours from us (Atlanta) and she did a preliminary genetics test. The MTHFR genetic mutation test came back positive and we began the recommended b-vitamin supplements (B-12, B6, methyl-folate). Around the same time, we removed artificial ingredients from Baylor’s diet. We also cut back on diary and added Juice Plus chewable vitamins, which “fills the gap” of the nutrients he doesn’t get in his daily diet.

ABA THERAPY

After many failed attempts to get Baylor what he needed from a behavior standpoint (including being kicked out of an after-school autism program) we discovered ABA Therapy. Applied Behavior Analysis is a proven method to help children with autism. There was a 2-month wait, but we contacted everybody we knew to get Baylor in the front of the line. We soon discovered that ABA therapy was NOT covered by insurance and is quite expensive. Chris and I were still determined to get Baylor what he needed.

He’s now been in ABA for a little less than a year and it’s been a game changer. It’s what he needed the entire time; we wish we’d gotten him in sooner.  We are seeing tremendous progress.

OUR LIFE NOW

Baylor is now 7 years old and going into the 2nd grade. His behavior, vocabulary and independence has improved significantly. He is showing interest in new activities and is more self-aware. He is helpful, caring and protective of his siblings. And since he’s able to express his emotions and what he’s thinking, everyone understands him much better. It is a night-and-day difference.

My heart breaks for him still, though, because he cannot go to “typical” summer camps like his sister (the staff is not trained to deal with his behavioral issues should they arise). He is going to ABA therapy almost every day. We are working on building his stamina up so he can try new things. We are always searching for new strategies to help him. And even though we are not “there” yet, we’ve seen enough to know that he has an incredible future ahead of him. Just his determination and ability to overcome ALONE will take him far.

WHAT WE’VE LEARNED

Most of us can get through tough times if we know there is a light at the end of the tunnel. Autism is heartbreaking because we don’t know WHEN or IF we’ll see that light. It could be just around the corner, but often it feels impossibly far away. What a test of faith! If this journey has taught us anything it has been to give up control and surrender to God’s plan for our family- whatever that may look like. We are blessed!

We’ve also learned how important it is to treat Baylor the same as his siblings. We expect family members and teachers to do the same. He’s fully capable. The bar is set high because he can absolutely reach it!

For those that are “in the trenches” like we are – keep it up. Take it one day at a time. Reach out, get answers. Celebrate small victories. Look for the miracles! Give yourself a break. You are doing a fantastic job.

It is entirely possible to get our kids to a great place.

One of God’s greatest blessings was giving Loxley to us. She pushes everyone outside their comfort zone!

How we roll in the Best house! Lots of laughs!

Typical brother & sister shenanigans!

Not your average lego builder! He put this together with very little help, followed the instruction manual perfectly. We were so proud!

He is a fish! It took two summers of traumatic swim lessons that included running away and hitting the teacher – oops!  To this day, he still tells me he never wants to take swim lessons again 🙂

I asked him why he was randomly wearing monster shoes and gloves in the house and he said “because I like funny things!”  ok, fair enough son. Me too.

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11 Comments

  1. Jan Johnston
    July 11, 2017 / 7:01 pm

    We enjoyed y’all being at Grady’s Party saturday. Your children are precious. Seems to me you and Chris are doing a great parenting job. Baylor seemed just fine to me, like all the others here.

    • Carli Best
      Author
      July 12, 2017 / 3:15 am

      Thank you Jan. The kids loved swimming at your house! Hope to do it again soon!

  2. Linda Best
    July 11, 2017 / 7:37 pm

    Carli, such a beautiful way in sharing Baylor’s journey & the way you & Chris show your love & support to one another as you take on the challenges of helping Baylor become the man God is developing him to become. Your blog will definitely give hope & encouragement to those that read your this. Love my little man, Mom Best

    • Carli Best
      Author
      July 12, 2017 / 3:13 am

      That’s my goal, to bring encouragement! I love you Linda!

  3. Amy Flynn
    July 12, 2017 / 12:50 am

    This is so great of you and Chris to share. It is very insightful and good to mention resources and how to get help when people need it. Baylor’s lucky to have such great parents who are open and take others advice not just doing it on their own! Kudos to you both!

    • Carli Best
      Author
      July 12, 2017 / 3:10 am

      Not many people talk about it Amy. There are so many kids diagnosed that you wouldn’t even know. Chris and I have chosen to break the stigma and open the door to talking about it. Hopefully more parents will do the same.

  4. Tonya Jones
    July 12, 2017 / 2:44 am

    Thank you Carli,
    My son was diagnosed in March 2017….I still can’t say it out loud yet. This is what I do….I worked with children with Autism. I’ve trained countless numbers of teachers but my baby sit in my home and I didn’t see it. We weren’t having any problems, he had no communication delay he just had behavior problems at school socially. I finally put all the pieces together from school some sensory things at home then it hit me. The guilt is heavy! But he’s getting everything he needs!

    I love you guys you guys are truly an inspiration

    • Carli Best
      Author
      July 12, 2017 / 3:08 am

      Yes the guilt is heavy! Autism looks different in every child and it could be easy to miss at home, because the behaviors aren’t the same! I was shocked at what the teachers said about Baylor. Like two different children! I know you will be strong like the Tonya I know!

  5. July 17, 2017 / 3:50 pm

    Thanks so much for sharing your story! I have a family member with Aspergers, and it is so helpful to hear other people’s stories, how they’ve dealt with it, and what their success stories are. All the best for this coming school year!

  6. July 17, 2017 / 3:50 pm

    Thanks so much for sharing your story! I have a family member with Aspergers, and it is so helpful to hear other people’s stories, how they’ve dealt with it, and what their success stories are. All the best for this coming school year!

  7. July 17, 2017 / 4:12 pm

    Beautiful story! I can completely relate to the struggles of diagnosis. Our son has a rare spine disorder, and it took quite awhile to begin treatment. Love that you’re sharing your story!

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