For World Autism Awareness we asked our group if someone wanted to share their journey about Autism. We couldn't have a more amazing group of supportive and motivational Mamas. Francesca is an amazing mama to Rafa, now 5 years old. We have watched her overcome obstacle after obstacle and just think she is AMAZING. We love her whole family and we hope these answers not only help but connect you to people and resources in the area! All children are amazing and special.
At what age or milestone did you notice something may be different?
Just after our 2yr wellness check when he regressed significantly in speech. We were already aware his speech was a little delayed, but still within acceptable limits. Shortly after he turned 2 he completely stopped using any language. As he continued to grow, we noticed other areas where he was not developing at the expected rate.
Did you have to advocate for your child or did a doctor notice it first?
Initially our doctor did acknowledge the fact that we were behind on the "expected" amount of words at our 2 yr wellness check, but he wasn't concerned enough to advise us to do something about it. When our son regressed a month or so later, we reached out to a few clinics to see what we needed to do to get speech therapy support. That's when we were advised to seek out ECI (Early Childhood Intervention). Even though we were the ones who got the ball rolling, our doctor didn't hesitate to help us with referrals when we needed them.
What was your biggest challenge early on?
Trying to identify what was going on. Rafa had a mix of developmental and behavioral “quirks” that did not fit any clear description of a diagnosable condition. We were not aware of if our son was experiencing: a developmental delay, ADD/ADHD, anxiety, autism, sensory processing disorder, something else, or a combination of these things. With no clear answer of what we were dealing with, finding the correct support was challenging.
How many different therapies have you researched, gone to, found success with, etc....
We have used both occupational and speech therapies, but we have also looked into other support services/therapies as suggested by both ECI and our healthcare team. The therapy journey started with a google search for clinics that offered speech services. I reached out to get information on the enrollment process and put us on multiple waiting lists. It took us almost 6 months before we went to our first location. After a couple of sessions, my gut told me the therapist wasn't a good fit for my son, so we got on the waitlist at the clinic where we had just begun Occupational Therapy. This next clinic worked out so much better as we are still going there after almost 3 years. My son has such a wonderful relationship not only with his specific therapists, but the whole team.
What are your child's amazing qualities?
His lovable personality, kind heart, and joyful nature. He's just such a happy kid and manages to make anyone who meets him smile.
What has your child taught you?
***Oof. This made me too emotional to answer. There is so much I want to say, but I wouldn't know where to begin.
What's your biggest piece of advice for a mom?
Do what is best for your child and your family. Your life may look different than expected, and you may miss out on some experiences you wanted the family to enjoy, but seeing the growth and development of your child is worth any short term sacrifices you may have to make.
What are some resources in the area you found helpful?
Our biggest help came from ECI (Early Childhood Intervention). They did an amazing job of providing support for and engaging with Rafa. This support helped us to transition him into the best preschool to support his needs. Along with aiding in his development, ECI taught us so much as parents. We received great lessons in supporting a special needs child and were shown how to best advocate for him.
MtDAC (Montana Developmental Assessment Clinic) was a great resource for getting our diagnosis. Other resources that I know I can reach out to if needed would be STEP, Inc (support for when kids age out of ECI) and Montana Empowerment Center (for kids who are school-age and have IEPs). And finally, the Special Needs Billings facebook group has been great for connecting with other parents, finding resources, and being aware of inclusive events for kids with special needs.