Our Autism Story

“Autism is a spectrum.” I’m sure you’ve heard that before. Well, that’s because it’s absolutely true. Autism or Autism Spectrum Disorder (ASD) currently affects approximately 1 in 44 children in the United States, and no two of those children are exactly the same. They each have their own strengths, struggles, and personalities. I can’t speak for all children with Autism, but I can tell you a little about mine. Here is our story.

What is Autism?

Autism is a neurodevelopmental disorder. It presents challenges differently in each person, but some common ones are trouble relating to people socially, delayed speech and language skills, and repetitive behaviors.

Our First Concerns

I cannot stress enough that all children (with or without Autism) are so very unique. Just because these concerns led to an Autism diagnosis for our son, does not necessarily mean your child with one or more of these behaviors or symptoms has Autism. *But if you are ever concerned, please bring it up to your child’s pediatrician.

Our son, Milo, was born in June of 2018. He met all of his developmental milestones on time, if not early! However, around 15 months old, we began to notice a few things that didn’t seem “quite right.” The first thing that became apparent was that he was losing vocabulary. Words that he had been saying for months, he just stopped saying. After this, we also noticed how he never held eye contact. He would make brief eye contact, but never hold it. At his 15 month check up, I brought up these concerns to our pediatrician. He said it could be cause for concern, but he would prefer to wait until his 18 month checkup to give Milo more time. He said we would know more then.

For those next three months, I watched Milo like a hawk. I never let him out of my sight. I wanted to document everything. It definitely took a toll on my anxiety, but that’s a post for another day. During this time period, he started to present quite a few new concerning behaviors. He started having these moods where he would just start making a disaster of the house. He would also spin in circles, line up all his toys, not respond to his name, not point or look at anything I pointed to, and he would parallel play next to his big sister, but would never actually interact with her. He would also run away from us and throw tantrums that could last up to an hour.

At his 18 month appointment, I presented our pediatrician with my documentation. He said it was definitely cause for concern now, and he referred us to Early Steps. Now, I do have an education degree, and a little bit of experience in special education, but not much. Knowing what I know now, I wish I would have gotten him on the waitlist for an Autism evaluation that day! But I think the lack of knowledge on Autism combined with a bit of “Mommy denial” led me to holding on to hope for a bit longer. We decided to just get him into Early Steps, and go from there.

Early Steps

Early Steps is Early Intervention. It may be called something different in your parish/county. When a child has developmental delays of any kind, early intervention is key. This was definitely the case for Milo. I firmly believe he would not be where he is today if it weren’t for early intervention. We started with Speech Therapy, then added on Occupational Therapy, and finally Special Instruction. Milo’s therapists during this time were absolutely wonderful! All three came to our house once a week for an hour (at separate times). They worked with him one-on-one, and he began making progress almost immediately. After working with him for a couple months, all three expressed their opinion for possible Autism with me. I’m so thankful that they did. I feel like I needed to hear the words spoken by professionals for me to leave my denial. So when Milo was two and a half, I spoke to our pediatrician again and asked for a referral for an Autism evaluation.

Unfortunately in our area, most providers have an approximate waitlist TWELVE MONTHS LONG. That’s why I said in hindsight, I wish I had just gotten him on waitlists after my initial gut feeling. But nevertheless, I started calling and calling. I got Milo on the waitlist for an evaluation at every single local hospital, institution, or private practice that would take our insurance. I did happen to find one place with a waitlist 1/3 as long, but unfortunately, they did not take our insurance. So the wait began…

Luckily during this waiting game, Milo was still in Early Steps, receiving his therapies. So he was continuing to make progress. However, he aged out at three. Milo has a June birthday, and the next program he could enter was P.E.I.P., which is run on a school schedule and didn’t begin until August. So that did mean we would go the summer with no therapy. BUT part of the process of Early Steps is also teaching me ways to work with Milo on my own. This was incredibly helpful, because this meant we didn’t have to go the whole summer with nothing. I did therapy with him! This meant no regression, which was a huge relief.

P.E.I.P.

P.E.I.P. stands for Preschool Early Intervention Program. This program is run by the public school system, and is hosted at local public schools. It has been WONDERFUL! Milo loves it. They go for two (2.5 hour) sessions a week. We chose mornings, so Milo goes two mornings a week. He receives his same therapies he was receiving in Early Steps (plus more), except now in the form of a short school day. He is in a small class of 8, and there are 4-5 adults in the classroom as well. This program is designed for children with special needs to receive their therapies, while also preparing them for a transition into preschool. It ends when the typical school year ends, and Milo will enter Pre-K 4 in August. I will do some at home therapies with him over the summer, once again.

Diagnosis

Last month, we finally got the call. The Boh Center for Child Development at Ochsner Hospital had reached his name on their waiting list. I made the very first appointment I could get, and a few days later I took him in for his evaluation. After 2 years of suspecting and 1 year of waiting, we finally got a diagnosis, Autism Spectrum Disorder. I’ll never forget that immediately after hearing those words, the doctor asked me, “How are you feeling, Mom?” I thought that was so kind. Although it was still hard to hear, I basically knew it was coming. I had two years to finally come to terms with it. It’s hard because no one wants that life for their kid. You bring a child into this world and instantly have all these hopes and dreams for them. You want their life to be easy. But what I’ve come to realize over the last two years, is that no one’s life is easy, whether neuro-divergent or not. He will struggle. He will get hurt. He will fail at times and learn from his mistakes. But that’s ok. His life will also be big and happy and fun and joyous and anything he wants it to be. That might just look a little different, and that’s okay. I know one thing for sure… I will always be right beside him cheering him on and here for him when he needs me. I’ll always be his biggest advocate. 🙂

Where Do We Go From Here

Having the diagnosis is helpful because it opens up even more opportunities for him. Number one being ABA Therapy. I know that people have opinions about ABA, but I went ahead and signed him up at a few places because guess what they all have… a waitlist. In the mean time, I am doing my research, and I have learned that ABA Therapy is not what it used to be. It has changed a lot. So many of the complaints people had about it are no longer valid. I also just finished a free online class/support group where I learned more about what exactly ABA is, how to spot a good program, what to expect, etc. I will continue to learn more about it, so that when a spot opens, I can make an informed decision.

I also just got him enrolled in additional speech therapy (additional to what he is already receiving in PEIP) at Ochsner. We started two weeks ago. He will go once a week for 30 minutes. This has already been great. The therapist has taught me even more ways to work with him at home too!

He is also on the waitlist for Occupational Therapy (in addition to what he is already receiving in PEIP) and Feeding Therapy at Ochsner. He is an extremely picky eater, due to sensory issues, so I am really looking forward to the feeding therapy in hopes it will help his diet. I’m glad to be getting him into additional speech therapy and occupational therapy because he will have a few months of doubled therapy, and then when he goes to Pre-K, we will keep attending these therapies at Ochsner.

His whole future might be a little unknown, but isn’t everyone’s? We will take it day by day. I fully believe with our support, a good school environment, and continued therapy, he will not only do just fine, but thrive.

I am so proud to be his Mom. I love you, Milo James.

[April is Autism Awareness Month. I hope to make a couple more posts during the month to help spread awareness and brag on my sweet boy. I’ll be answering many FAQ in a future post, so please feel free to ask me any question. We can’t learn unless we ask. ]