Kids, Special Needs

Autism Spectrum Disorder

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When Levi was two, I made the observation that he did not speak. At all. He maybe had three or four words in his vocabulary, but mostly pointed at things when he wanted them or screamed like a banshee if we didn’t understand him or he didn’t get what he wanted. When I asked his pediatrician, he told me that sometimes boys develop language a little later and slower than girls and that if he didn’t improve in the next six months that we could get him a speech evaluation. I was used to my two girls speaking full sentences by two that I hadn’t thought about boys development stages being different. So I decided to wait.

Over the next couple months of summer, he did not improve. In fact, he got worse. The screaming for things increased and multiple times a day I ended up in tears because I didn’t know how to fix it. My heart broke for my son, who wanted to talk to me, but couldn’t. He literally couldn’t. Everyone had an opinion about our situation. Levi was being lazy, or he was a late bloomer, he needed to be spanked, I needed to stop babying him. It made me feel worse. I was failing my son and I didn’t even know how I was failing him.

A friend messaged me on Facebook and told me about the Regional Centers and that I should call and put in a referral for a speech evaluation.  Regional Centers are nonprofit private corporations that contract with the Department of Developmental Services to provide or coordinate services and supports for individuals with developmental disabilities. I didn’t know about these centers and when I researched it, there was a center right in my own city! I gave them a call and asked for a referral for Levi and we got an appointment for that week.

During the evaluation, we met with the case manager and then the physical therapist and speech therapist. They asked him to do physical things like pick up toys or climb stairs or build a block tower. And then they asked him questions to see how he would respond. They would show him a set of pictures and ask him, “Where is the ball?” And he would point to the ball. “Where is the car?” He would point to the car. Then they would show him pictures and ask him, “What is this?” But he couldn’t answer them. He could understand, but he couldn’t reply.

After the evaluation, they determined that his physical ability was around an 18-20 month old. His speech ability was around a 9-12 month old. He was 28 months old at the time. When they told me this, my heart sank. It hurt to know he was so far behind. I used to teach preschool and am a huge advocate for early childhood education and I’m familiar knowing the struggles of delays. Their plan of action was to provide speech therapy for him a few days a week. Even though he was behind physically, it wasn’t enough to give him services and I mentioned that I would be working with him myself.

Speech therapy changed our lives. Because Regional Centers only take little ones until they age of three without any kind of diagnosis for disabilities, and they determined him not to have one, he only had six months of speech therapy. We had the most amazing and patient therapist work with him  during those months.

At first, he worked with Levi on one word at a time, emphasizing consonants he had difficulty with, and then working his way to two words and then three words.  He would say milk. And then a few weeks later it was “want milk” and weeks after that, “I want milk.” The first time Levi looked at me and said, “I love you”, melted my heart. He wasn’t screaming for things. Our therapist, helped him find his words! In the six months that Levi received speech therapy, he went from saying eight or ten words to saying over a hundred.  He still had problems with his articulation, pronouncing certain sounds of letters, but he was able to communicate with us easily. We will forever be grateful for Mr Ken and his efforts with Levi. It looked like they were playing all the time, but it was really hard work. There were days Levi didn’t even want to try and the session was a waste. But Ken did not give up on him.

When he aged out of Regional Centers, they sent his case to the local school district to be evaluated for speech there. They checked his eyes and ears and physical abilities and then had him say the names of objects and letters. They were impressed that he could identify all the letters of the alphabet, his colors, and shapes(once again, high five and shout out to our amazing speech therapist who incorporated all that into sessions!!)

          We set up an IEP meeting and at the meeting they told me because he had no medical diagnosis and was at what they believed his age level in speech, they would not be able to provide services. One of the ladies told me, “He’s smart. He knows more than some kindergartners.” I wasn’t worried about what he knew. I was more concerned with how he pronounced them. So I asked our pediatrician for a referral for speech through our insurance and we went to a private office for an evaluation. Because there was no medical diagnosis, the insurance denied him. We were stuck. I felt he still needed help and no one was willing to help.

Despite Levi using his words, I noticed a few things. He had a hard time transitioning between thinking and talking. It was like his mind was thinking the responses he wanted to say, but his mouth couldn’t say them. He was slow at replying. He showed OCD behavior, such as lining things up, needing things to be done in order, or screaming if his hands got wet holding a wet cup. He was withdrawn from other kids and didn’t socialize well. He didn’t play on his own. He had a hard time making eye contact, even when asked. All the things typical kids don’t usually worry about, he freaked out. He showed a lot of anxiety in social situations. I took him back to the pediatrician and voiced my concerns. He gave us a referral to a neurologist.

The neurologist met with us and tried to talk to Levi, but Levi ignored him and didn’t talk. The neurologist talked to me and asked me about my concerns  and family history and brought some toys in for Levi. He was able to observe a few things, but needed a repeat visit. On our second visit, Levi was very rude to him( at least what I thought was being rude, but the Dr told me that it’s what he needed to see if it was atypical behavior), and he threw the biggest tantrum when we took the toys away. The neurologist told me that although Levi seemed to be on the borderline of the spectrum, he would diagnose him with Autism Spectrum Disorder so we could get the help he needed. On the actual insurance paperwork it was listed as Asperger’s Syndrome, however I’ve come to find out that Asperger’s Syndrome has been put on the Autism Spectrum and it’s all listed as Autism Spectrum Disorder.

When I drove home with Levi, I cried. I was happy that someone had listened to me, I was relieved that we would get the help we needed to help him cope with all his struggles, and I was afraid for what the future would be like for him. Would he be a normal kid? Would he make friends and go to a regular school? It was that drive home that I realized that our road ahead would be long and hard and I was determined to be a good advocate for him.

4 thoughts on “Autism Spectrum Disorder

  1. I can’t even imagine everything you must be feeling and dealing with on a daily basis. I know I’ve told you before, but you are an amazing mom and thanks to you unrelenting when multiple people told you nothing was wrong, Levi is getting the attention and therapy he needs. Hugs from far away. 💗💗💗💗

  2. I love this so much Jackie. Thank you so much for sharing your story. I love love the last photo on this blog. It’s so endearing and sweet. ❤️😊

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