The Willie Family

Our personal journey into the autism community began 3 years ago in August of 2019 when our son Noah was born. In the beginning, Noah seemed to be developing like a typical child would, meeting all milestones. By a year old he was speaking a few words, walking, and doing all the things that a typically developing toddler should be doing.

 

At 14 months everything changed. Noah stopped talking, he was not interacting well with others, he hated to be in large crowds (especially when things got loud), he did not follow directions, he was constantly climbing on things, flapping his hands, toe walking and began to throw severe tantrums that involved self-harm. At this time my husband and I knew very little about autism. We knew that it existed and some very vague things about it but that was really the extent of our knowledge. At Noah’s 15 month well child appointment we began to voice our concerns to our pediatrician regarding Noah’s speech, or lack of. We were told that many boys are delayed and that this is a normal thing for a boy his age. I knew in my heart that this was not the case, but I wanted to trust what the doctor was telling me, so I did not dig much more that day.

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By 18 months he was still not speaking, throwing the tantrums and all the red flags were still present. I wanted to start ruling things out so we could get to the root cause of these behaviors. We reached out to his pediatrician again and requested to have his hearing tested. The hearing test was normal so the next step that we requested was speech therapy. Around this time, a good friend of mine, Lizzie, reached out to me and offered me the encouraging nudge that I needed to act. She shared her story with me about her son who is on the spectrum and how Noah reminded her of him.

 

At Noah’s intake appointment with his speech therapist, she talked with me at the end about some behaviors that she noticed during the appointment that correlate with autism spectrum disorder. This was all that I needed to hear to begin the process of reaching back out to his pediatrician and demanding that we begin taking steps to have him evaluated. At his appointment, the doctor agreed with all the points we made, and we began the process of getting him in to be evaluated and receive an official diagnosis. Little did I know how long these wait lists are.

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We were placed on the waitlist for 3 major hospitals as well as with Murray State University. Each of the hospitals had extremely high wait lists ranging from 12 months-2 years. I was so frustrated with this process. How are we going to get our son the early intervention therapies he needs when insurance refused to cover these services without a diagnosis, and we were having so much trouble getting the diagnosis? 2 months after the initial referral was made, my daughters’ preschool teacher told me about KY First Steps. My husband and I immediately looked into this service, and I am so thankful we did. Noah began receiving OT, Speech and DI through first steps within a month on top of the speech therapy he was already receiving through a private company.

 

We began our journey to get some answers in February of 2021 and finally got our diagnosis through MSU on March 7, 2022. I know that our journey has only began. Noah will have high moments, but he will also have low moments. Things are never going to come as easily for him as they do for others, but that is ok. He is the bravest, kindest, smartest boy that I know. He always tries his best and is extremely intelligent. This autism journey is not an easy one, but it is ours and I would not change a single thing about Noah.

 

Shortly after we began the process of getting our diagnosis, I was introduced to FOTS. FOTS has been an incredible resource for our family, and I am so thankful for the knowledge and friendships I have gained through the group. I hope as Noah gets older, he understands how amazing this group is and how much he is cared for by the people in it. Being a part of FOTS means getting the pleasure of watching our children grow, meet milestones, achieve goals, and learn new things. We experience the highs and the lows together and offer encouragement and a helping hand, everything a family should be and more.