My Son Has Autism: The Story of the Johnson Family
April is Autism Awarness Month. Autism is something that is becoming more and more normal in our children. In fact, 1 in 68 children are diagnosed with a form of autism. So in honor of this month we will have different stories to share with you about some awesome kids.
Today I would like to introduce you to the Johnson family.
In January 2004, I was blessed with a beautiful, precious baby boy. I named him Landyn, and he changed my entire life from the moment I saw that first sonogram. I had a few complications during my pregnancy with him, but nothing too severe. Everything was normal in all the sonograms. He had 10 fingers and 10 toes, all his organs had formed and were functioning properly, and he had a FULL head of hair! He was absolutely perfect in my eyes when he was born.
From the time he was 2 weeks old, he was frequently sick. At 2 weeks old he got RSV which seemed like it lasted forever. This is when my husband and I were dating, and he stayed at my moms with me while Landyn was sick and helped me with everything. Landyn had RSV at least once a month and pneumonia in between. He was in and out of the hospital monthly, and at 3 months old we were told that he had severe asthma.
For majority of his life he has been in and out of the hospital with everything from RSV and pneumonia to Whooping cough and unknown viruses that no one knew anything about; all of which required hospital stay after hospital stay for several days at a time.
He was placed on 7 medications at the age of 9 months for asthma and allergies, which he had to take twice a day (and he still to takes those medications today at the age of 10). There were so many sleepless nights filled with breathing treatments every 2-3 hours and even times when he stopped breathing, and so did I! I tell you these things because we thought this was heartbreaking, and trying, and all together hard to handle.
However, there were a lot of things that were overlooked from the time he was born. He was a quiet baby. He hardly ever cried or made any noise. He only fussed or made noise for reasons such as a loud noise, when he was hungry, when he needed a diaper change, and when he wasn’t TIGHTLY wrapped in a blanket when it was time for him to lay down. He didn’t like to be held all the time, wrapped or not. He wanted to be wrapped and laid in his cradle. He loved classical music and other music and I played it for him 90% of the time because it seemed to soothe him.
As he got older he didn’t act like most children his age. He was still very quiet and he liked to play alone. He had particular toys that he liked to play with and anything that made loud noises, and didn’t have adjustable volume, were NOT okay. He didn’t say words, instead he made noises or gestures. He walked before he crawled. He disliked the feel of certain things, and his bath water had to be luke warm all the time.
At around 1 year old he started having tantrums that started becoming violent. He would bang his head on things on purpose and throw things when he was frustrated. I was pregnant with his brother at the time, and had a full time job. All of this just seemed to aggravate him even more. He would hit my stomach and throw things at me. He would headbutt me in the face, and kick me. We were told by his doctor that this was normal behavior it was separation anxiety and likely jealousy over the baby in mommas tummy and the fact that I had started working. He said that we just needed to set more boundaries and try to help with the jealousy he was feeling, and that I needed to spend some extra time with him when I could to help with the separation anxiety. So, that’s what we did, but nothing really changed any of it. We didn’t know what he wanted half the time and it frustrated us because we didn’t know what to do or how to handle it. So we just dealt with it the best we could.
Landyn’s brother, Alexx, was born in April 2005. That’s when a whole new set of problems came along. He would hurt his brother for what seemed to be no reason. Alexx had several sets of stitches and scratches on his back that would bleed. Landyn would take out his aggressions on his brother as well as himself. This resulted in the hospital threatening to call CPS because they thought we were abusing our child. We kept telling them what had happened and they didn’t believe us. The last time we went in for Alexx to get stitches, they told us that they had to report it. About 5 minutes later, the doctor saw exactly what we had been telling her. Landyn became violent with Alexx for touching his cars (which were HIS and he didn’t like anyone to touch them unless he handed them to you! And that didn’t happen very often.).
When Landyn was about 1 1/2 years old, I changed jobs and had to put them in an in-home daycare. Landyn didn’t handle that well at all! He became more aggressive, frustrated, and aggravated. He started repeatedly banging his head on the walls and floors and no matter what you did, he wouldn’t stop. We would pick him up and hold him and try to soothe him. When we thought he was calm, we would let him go and he would go right back to it. Which caused severe bruising and sometimes blood blisters. Again the doctors said it was normal tantrums to get what he wanted or to let us know he was mad.
Almost a year after I put them in daycare, the babysitter approached me one day when I showed up after work to pick the boys up. She said that she used to work with children who had Autism and that she thought Landyn had Autism. That she recognized the signs in my son. I became very defensive and angry. I cried and I told her over and over again what the doctor had said. I was LIVID! “How dare this woman tell me what was wrong with my son! She’s not a doctor! She doesn’t know what she’s talking about! ” These were the thoughts that were going through my head. I didn’t know what to do or think. I grew up hearing how horrible Autism was and saw how kids were treated who had any kind of mental disorder. The “R” word was used daily for people who had any intellectual disability or mental disorder. “Not my son! She’s crazy! ” Those were my next thoughts. So, I went home to talk to my husband about what she said and he had similar thoughts about it. We decided to go through with the testing, more or less to prove her wrong. We took him to TPMHMR and they did the testing. I knew by the demeanor of the woman who tested and evaluated him that we weren’t going to like what she had to say. She sat down with us and told us that he was on the Autism Spectrum and that he was mild to moderate. We immediately burst into tears and PJ started asking questions. I, on the other hand, wasn’t hearing any of it. I wanted a 2nd opinion. So, we got one, and that one came back the same way. So I asked for a 3rd opinion. When that one came back the same way, we were completely overwhelmed with the diagnosis and what this meant for our son and our family. At this point I panicked. I put in my 2 week notice at work and pulled my children from childcare.
After a few days, I came out of denial and accepted the diagnosis. I researched everything I could about Autism, every bit of literature in books and online. Everything I read described our son exactly, and I realized that Autism was not what I grew up believing it was. It can range from very mild to extremely severe, but its not the end of the world. It can be difficult at times, but its nothing to fear.
Landyn didn’t speak until he was almost 6 years old. We put him in Highland Park in kindergarten and his teacher was amazing! She and Landyn just clicked and she made huge progress with him. In fact, I will never forget when everything changed. About 6 weeks or so of being in kindergarten, Landyn had started talking to us in very short and to the point sentences. About 6 weeks later he started having conversations with us, and a few weeks after that, Landyn came home sat down with me, and started reading a little book to me! I was so happy I burst in to tears! He did the same thing for PJ when he came home, and well, daddy cried too. But the most wonderful thing happened several weeks later, Landyn had come home from school and I had gotten him a snack and I was sitting next to him. We were talking about school and out of no where, he hugged me and said “I lub you mom!” I began to sob uncontrollably. Landyn had NEVER said that before! We never thought that would happen because we were told not to expect it, but it did, and that was one of the most beautiful moments in my life! To this day I tear up when I talk about it or think about it.
Our son is an amazing child! He is extremely smart and very serious 99% of the time. You can’t tell he has Autism by looking at him and you can’t always tell by watching him. We started therapy with him right after we got the diagnosis and we all learned how to cope and live life pretty normal. Landyn has adjusted well and so have we. It’s a constant learning experience as he gets older because we learn new things about him daily. Landyn doesn’t have the best social skills, he appears shy at times, he doesn’t like certain textures of food or clothing, he ONLY takes showers (he doesn’t like baths) and the water has to be EXACTLY the right temperature. He wears his socks inside out because he doesn’t like the way the inside of the socks feel on his feet, he doesn’t like loud noises, and thunderstorms will send him in to an all out melt down. He doesn’t have the best coordination skills, he fidgets and can’t sit still, he doesn’t make eye contact, he prefers to play alone and is often in his own world. He’s very honest and says EXACTLY what he is thinking, he doesn’t like public places and crowds of people, he DOES NOT like the colors red and orange. He loves anything to do with science, computers, and anything mechanical, his favorite color is blue. He has melt downs and freaks out over things that most people think are petty, he likes things to be done a certain way (and if it’s not done that way, it throws him off and can cause a melt down). If Landyn hugs you or lets you touch him, feel very blessed! That means he feels like he can trust you and that he has accepted you into his world. Our son is absolutely amazing! We love him more and more each and every day, and we wouldn’t change him for anything in this world! He has overcome a lot, and he has surpassed so many limitations that were placed on him with the diagnosis. Things they said he would never do, well Landyn HAS done them!!
I would encourage everyone to do their own research about Autism. Become familiar with it and get a better understanding of it. There is nothing bad about it. I have heard so many negative and sometimes hurtful things from people about kids with Autism. Some believe it’s just an excuse for the way our children “behave”. It’s not an excuse for anything and it’s not “behavior issues”. It’s the way they react and process everything around them. It’s what happens when there is too much stimulation around them. Too much noise, chaos, or even things that we don’t fully understand. It may not be something we find hard to process or handle, but they do! All you have to do is be understanding.
Our son doesn’t “get away with murder” like so many think and have stated. We learned the difference between what is Autism related that he can’t control, and what is typical child behavior, and when it’s something that isn’t Autism related we deal with it the same way we do with Alexx. We have rules and consequences. But, we don’t discipline him for what he can’t control. So please, the next time you see a child having what looks like a tantrum in a restaurant or store, don’t judge the parent by what you see. Don’t assume that the child is simply “out of control”. That child may very well have Autism and that is the only way they know how to express and process what’s going on in their body. The parents are doing the best they can. Some parents aren’t even aware that their child has Autism and even if they are aware, that doesn’t mean they know how to handle it or what to do. So, instead of judging and assuming, be understanding, compassionate, loving, and tolerant. And for parents who have children with Autism, please do not put limitations on your children! They can do so much more than people think they can! They can live a so called “normal life”, or you can empower them to live an EXTRAORDINARY LIFE!! All you have to do is believe in them and encourage them.
It’s Autism Awareness month, so become aware!!
~Tara & PJ Johnson