It’s been 6 months since we found out Aidan was on the Autism Spectrum with PDD-NOS and it has felt like I have been on spin cycle every day ever since. I’ll never forget the morning he got the diagnosis, going in I was completely torn. I wanted a diagnosis, I mean I wanted to know what was wrong with my little guy BUT who would ever want something to be wrong with their child? At the same time feeling scared that another doctor was going to look at me like I was crazy and say “oh no he’s just a two year old”. Then we went through the test where the doctor asked me and his early intervention coordinator (yes she went to the appointment with me, she really is THE BEST!) a bunch of questions and then played with Aidan. At the end of the appointment she scored his results and told me she was diagnosing him with PDD-NOS. I fought back the tears even though I had anticipated the results; I hated to imagine what he was going through. The next few weeks were an emotional rollercoaster, Between being happy to have answers, sad that he had the diagnosis, and mad that it took so long to get it, I was feeling plain Crazy and since Hubby was working 18 hour days back then and didn’t really have any idea what Autism was I was feeling very lonely. But all these feeling soon passed because I quickly realized I didn’t have time to have a pity party I needed to find every way possible to help improve my sons condition! Right now Aidan receives services 5 days a week from different therapists, he has a speech therapist, developmental therapist, occupational therapist, autism therapist, and two floor time therapists. Luckily our insurance covers it all because we could never afford this type of care. My little guy is VERY busy but luckily he loves all of the wonderful ladies that come out to see him so he really enjoys it. These services have helped him so much there are days I look at him and think how could there possibly be anything wrong with him, this is all wrong…. Then he has a melt down or a really unregulated day and I am smacked back into reality. Yet no matter the struggles we have and will face I can’t say that I would change anything given the chance because he is hands down the funniest most loveable little boy I have ever loved!
Something had been Tugging at my gut lately about Lilly, and after walking through Aidan’s “diagnosis stage” I remember always hearing “a mother just knows, follow your gut” so I made an appointment with a neurologist at Children’s Hospital who was absolutely fabulous…… And Lilly got the diagnosis of autism spectrum disorder! It’s so strange that feeling you get when a doctor confirms your child has a disability, that feeling of sadness that they have something that may hinder them, happy that you have answers, worried about upcoming tests and specialists, and so many more feelings that are jumbled into that pit in a mothers stomach. As I work through those feelings now knowing both twins are on the spectrum I have good days and bad days but am absolutely dedicated to learning how to become the best advocate my children could ever have.
Aidan was such a happy baby. I had always been a pretty easy going mom, the mom who took her kids everywhere with her without a second thought. We took trips to the mall to walk around, went to the park, had play dates, and I was in my glory because all I ever wanted to be growing up was a mommy and more importantly a Stay at Home Mommy. I didn’t want to leave my children everyday, I didn’t want to miss them growing up, and now finally I had all I prayed for. I was home with all three of my little loves, doing the wife and mom thing.
Then around the same time as Aidan and Lilly turned one, I realized Lilly wasn’t talking or crawling. Back then I had no idea what Autism was, the stigma in my mind was “Rain Man” and Aidan wasn’t that version of Autistic. Aidan smiled, Aidan ran and played, Aidan liked to be hugged. Everyone thought he had ADHD, that was the going joke around people not living in my shoes “your son has ADHD at one”. I would laugh it off in public, and cry at home. This little boy who melted my heart with every smile and every hug, was also making me second guess leaving the house and worry constantly about keeping him safe. He was running into walls and furniture, throwing himself of the floor, doing summersaults off the couch, climbing everything and anything.
I didn’t know what was wrong, in tears I explained what was happening to the kids pediatrician. While I love there pediatrician, I don’t think he saw Aidan as an autistic child either. All I got was a “just keep him safe” from that doctors appointment. I did however get a phone number to Early Intervention from him for Lilly. Not knowing what to do, I called and made an appointment to have both twins evaluated.
The morning the Early Intervention Teams came to evaluate the twins, Aidan was in full “Aidan Speed”. He wouldn’t stay still for floor time testing, licked everything including the wall, and when taken out to the stairs to see if he could walk down them he attempted to jump down the entire flight. I’ll never forget sitting in a circle after that hour, and for the first time, someone looked at me and said “your not crazy” and “we’re going to help”. That day I finally felt like some of the control was back in my hands, like answers where coming, like I can help Aidan. A week later I met with his team again, they gave me a bunch of information about Sensory Processing Disorder and started him right away with Speech Therapy, Occupational Therapy, and Behavioral Therapy every week. I read through the SPD info and was shocked how much it matched up to Aidan. The rocking, the running into things, the not keeping clothes on, everything.
As Aidan began services, his coordinator advised me to make an appointment with a Developmental Neurologist. These specialists take months to get into see, however as she was preparing me for the strong possibility of a diagnosis, she also called the neurologists office in an effort to push the appointment request. We got an appointment within a month, by this time Aidan’s workers had become like family. I had gone from not leaving the house and hardly having contact with anyone beyond my husband to having these woman come every week at different times, they kept Aidan busy and safe so I could breath and sit for a moment. They were there when ever I had a question or needed to vent, they were my support system.
Aidan’s coordinator went with me to the appointment, I was so nervous, I am so glad she was there. We left the appointment with an Autism Diagnosis, along with the Sensory Integration Disorder, and Language Disorder diagnosis’s.
I cant explain the feeling I had driving home for the doctors office. I wanted to cry because my son had Autism, I wanted to smile because I finally knew he had Autism, I wanted to scream at his pediatrician because he had Autism every time I talked to him about Aidan.
The weeks following the diagnosis are a blur. I was reading books, talking to other moms, early intervention added an autism specialist to his treatment and referred him to a floor time behavioral program. Once the floor time therapy started, Aidan’s therapy jumped from 3 hours a week to over 15 hours a week, 5 days, with 6 different therapists. My house felt like a merry-go-round at times, but I was also so grateful for everything.
Aidan is now four, he aged out of early intervention at 3 and started the SPED program in public school. He has his ups and downs, he has melt downs, he still acts like he is run by a motor. He has no safety awareness, and I still worry constantly. However having all those therapists in his life so early on, gave so much power to Aidan and to me. Aidan learned so much and came so far, and I learned how to redirect him, how to regulate, and how to advocate for him. EI was in our home to teach Aidan to play and talk like his peers, but they also helped me find my voice.
(Lilly also qualified for speech, after not progressing she went to the neurologist and also got an ASD diagnosis, she then got intense services mimicking Aidan’s. Her speech increased greatly, along with her muscle tone. She still has sensory issues and delayed processing but has improved greatly)