How I knew, and what I did...
At 15 months, Zion began to have extreme tantrums that would last for HOURS. When noticed this change when we were on our way to Ohio in September 2020. He did so great the whole drive until we got close to Chicago, and thats when the switch flipped. We attributed it to him being over riding in the car, but it continued for months. As we got settled in our new home, thing began to settle and we didn't think much of it. As he approached 18 months, the tantrums began to ramp up again and he also started banging his head on the door, wall or hitting his head with his fist when he was upset. I brought up my concerns to his pediatrician at his 18 month appointment, and she had me fill out the autism
screening. Because I was familiar with symptoms from working as a Behavior Technician, and had spoken to a couple friends and my mom about some red flags, I just knew she would take my word and listen. Well, surprise surprise, she had zero concerns. She attributed the head banging and tantrums to him being a toddler and being unable to express himself and communicate effectively at this stage, and assured me that he would grow out of it.
In my heart I knew that this was not just your typical toddler behavior, but I decided to wait it out and give it some time. Well, as the months began to pass, I noticed that he was not using as much language as he should have been. Words he once had, he no longer used, and his vocabulary was definitely not growing. He didn't really talk much at all, some babbling and singing along to songs in his own little language, but that was yet another red flag for me! He was no longer calling for me, he no longer said thank you, hi, bye, please...The basics that children approaching two years old should be able to say. I will go into more detail of signs I noticed in a bit, but those were the first two things that I noticed and kept in the back of my mind!
Zion turned 18 months in January 2021, come April 2021, we found out we were moving again days after I delivered Malakai, so I decided to wait to get the ball rolling on evaluations and appointments until we moved and got settled in. Lets fast forward to August 2021...
August 2021, we relocated to our new home, and I just knew that with more space and being settled into a bigger space and great weather that he would be happier and we would finally
see his behavior begin to take a turn for the better. Welp, I was wrong. Zion would have tantrums lasting for HOURS every single day. From the time he woke up until he fell asleep for his nap, he would be so unhappy, then off and on once we were home from picking Mason up from school. Y'all, when I tell you I was MISERABLE... He still was not using words, and the tantrums were worsening. Once I set up our new insurance, I started making phone calls!
On August 20, he and Malakai had a pediatrician appointment, and we shared our concerns with her. Thankfully that day he screamed the entire time we were in the doctors office. It was stressful, but she was able to see exactly what we were telling her, and she put in a referral for him to be seen my a psychologist and with a therapy center here! This is where I finally exhaled. Someone FINALLY listened to me!
A couple weeks later, I heard from the therapy center and when they told me the cost of therapy, my heart sank...There was no way we could've afforded it with the insurance plan we had at the time, I didn't know what to do. To add to that, I got a call from the psychologist at the autism center here, and they said it would be months before he would be seen for an evaluation. I didn't know what to do, and felt so lost and hopeless. My baby needed help, and I felt I couldn't help him. While I knew what to do, I also had an infant and five year old at home, and my husband was gone at work all day. I didn't have the strength to be therapist and mommy.
Not too long after this, I shared everything with my godmother, and she told me about the regional center. I had no idea this was a thing! The regional center provides a range services to people with disabilities from birth - adults. For children, they provide early intervention services, so I hopped on it and we had his evaluation in October! Due to covid, everything was virtual, so I met with his worker via zoom to do his evaluation to see where he was developmentally and if autism was a concern for him. The results of his evaluation were no surprise to me, they gave me a sense of relief and I knew how to move forward! Based on his results, at the time, he was performing at least 10months behind in some domains, and more in others, and based on his scoring on the MCHAT (autism screening), he was considered to be high risk for autism.
We began early intervention services which consisted on 1 hour of occupational therapy per month and one hour of speech therapy per month. For many families, EI services were extremely helpful, for us, they weren't because it was only a 1 hour zoom call every month. It was difficult to establish a relationship with his therapists, even though they were amazing, I wish we were able to work with them in person!
In January, Zion began attending a speech playgroup offered by Nevada State College and that is when we began to see SO MUCH progress in him! He LOVED going every week, and he began using so many words! It was amazing, and they were so impressed with his progress! He attended this group through July, we were sad to leave, but his time there was just enough to carry us through the several months he attended!
Rewinding back to February...I was able to get him in to a pediatrician who claims to diagnose autism. For over a year now I knew that that was the cause of the struggles we had been having with him, I just needed an official diagnosis. She looked at me and said "He does not act like a child with autism" whatever the heck that means. I pushed for a diagnosis, but it was not enough to get the resources he needed. I was so frustrated until I got the call from the autism center a couple weeks later saying that there was an opening for his evaluation in March! When I say that this was all God...some families are waiting on this waitlist for over a year, and we got in in 5 months...I was over the moon because I knew that this would finally be it!
March 24, 2022 I brought Zion in for his evaluation, and I finally felt at peace. As some of you know, I used to work as a behavioral therapist for autistic children, so I was very familiar with the terminology and methods used to determine his diagnosis, BUT I have never been the parent. As I watched the doctor work with Zion, tears filled my eyes. I was overwhelmed with many emotions as I came to the realization that life was about to change. Once the diagnosis was official, therapy would start shortly after, and we could finally (slowly) begin to live our new normal. What a roller coaster ride that was, but we finally got answers, and my big boy is THRIVING! We are in awe of the progress he has made and so grateful to everyone God has placed in our path and for the support of our families. An autism diagnosis is not a horrible thing, in fact it is truly a blessing! We are learning so much everyday, and it is not easy, but it is so so so WORTH IT!
If you have questions, feel free to comment them below or reach out to me via email or on Instagram! I would love to chat with you!
Here are some questions that I have been asked regarding our experience:
What were some of the signs of autism you recognized in Zion?
The most evident signs were the tantrums, head banging, and lack of verbal communication. As he has gotten a bit older, he started scripting (or echolalia), fixations with things needing to be in a certain order, lining up cars and blocks, visual stimming (which has decreased significantly in the last 3 months).
Who did you talk to to find out what to do?
I first spoke with people who I trusted that had experience in the field, then spoke with his pediatrician (which was not helpful). If your child's pediatrician is not helpful, PUSH for further testing AND reach out to your areas Regional Center to begin Early Intervention services, which are FREE, and they can guide you in the right direction while providing services. My experience is very different from other families I know personally. You do not need a doctors referral to begin the process! If your child's pediatrician is not supportive, find a new one who will be!
What kind of therapy is Zion in and how is his progress?
Zion is currently in ABA Therapy (Applied Behavioral Analysis), and is thriving. He started in July, and since has been communicating effectively, has had minimal tantrums, and ultimately he is genuinely HAPPY. There are many mixed opinions about ABA therapy, but I am a firm believer that with the right team, therapy can be extremely effective.
What activities do you have at home that have been beneficial?
We set up our extra room as a playroom for him, and it is across from his bedroom, so that he is able to go in there and play freely! We wanted to make sure he had a space where he is safe and can play without us worrying about him! He has a trampoline (he loves jumping), a train table, magnatiles, blocks, and he has an iPad. On his iPad, I have limited the apps on it, so he only has a few to choose from that are beneficial to him! His favorite is Khan Academy Kids, he also has PBS Kids Games and Video and Disney+. I wanted to keep the apps limited because I want to make sure that his time on the iPad is enriching, but also fun. I will add more, I am just searching for the best ones that will spark his interest!
Here is a link to products that we have in Zion’s playroom!
How do you feel about his autism diagnosis?
Honestly, I feel okay about it! I did have moments of grieving the life I thought we would have, which I still do from time to time, but overall I feel good about it because I see how well he is doing! Every little milestone is a big one. We have so much to celebrate with him every day, and that has brought so much joy to us in this whole journey! The care that he is receiving in therapy has given me so much PEACE, and I am confident that he will be able to live a very full life!