Stories From the Spectrum

Hi there, and welcome

Our journey started when Milo was just 18months old. We knew that something was off.  He wasn’t speaking or responding to his name. Then at about 20months things took a dramatic turn.  Milo stopped using silverware, eating foods, and using any noises as communication. So we went on a quest for answers. At  2 1/2, Milo was officially diagnosed as autistic.

To say I was heartbroken, would be an understatement. I truly had to mourn who I wanted him to be.  Because Milo is who he was meant to be! He may never play sports or get married. Heck, he may never say “Mom”, but he can be a productive member of society. He will be great at being an “Adult”, whatever that means.

If I can give any advice, it would be: Life is so beautiful. Find just a little happiness every single day! Sometimes it’s hard, but look, it’s always there

-Milo’s Mama

Stories from:

From Tiffani

As an early interventionist I love working with families of young children with autism. Oftentimes we receive a referral because their child is not talking.  As we get to know the family and child, it is often a difficult but necessary conversation if autism is a concern. Walking through that with a family and watching them gain confidence in ways to help their child is an awesome part of my job.  I love watching children make progress and parents become advocates for their child. I have learned over the years that it is important to remember that each child has their own special skills and interest and that diversity is important.   It is an honor to be a part of their journey. -Tiffani

From Amber

I have spent the greater part of the last decade working with children and their families from all walks of life. I started my journey with children with behavioral concerns, including children diagnosed with Autism Spectrum Disorder (ASD) fresh out of college. I was a young, a little naive, and a 22 year old who was determined to change the world for kids who no one else wanted to work with. I landed myself working as a direct support professional in a classroom for children with severe behaviors aged 6-21. My classroom was full of kids that no one could “handle,” or really knew, “what to do with.” I couldn’t tell you how many times I heard my kids referred to as, “the behavior kids.” I will be truthful when I say there was quite the learning curve for me when it came to working with children on the Autism spectrum and their families as well. But, as cliché as it sounds those kids, my kids, taught me so much about patience, compassion, love, and joy. We celebrated their successes no matter how big or small, because the harsh truth was that some of their behaviors overshadowed those moments where, “Tommy was able to pick up that puzzle when I asked him only one time!” or when “Sophia looked at Ms. Amber and said I’m frustrated at you.” I was blown away at what I learned from these kids, and even more so by their loved ones. A parent once told me, “the minute you say can’t or won’t it’s game over. It should always be they will, it’s just when” and that has stuck with me.  It broke my heart to think that there were some people out there who when they looked at my kids they had no idea what was going on in their world because Autism and other things like are often not seen on the outside. The heartbreak I saw on a parent’s face when someone when an outsider would look at them as I helped them with their child having a meltdown at the entryway was always something that angered me because how could they not see what I saw? A parent trying their best, and a child trying to tell us something was wrong only they didn’t know how.

I worked many years supporting children directly, overseeing staff who supported those kids, and I just felt like I needed to keep doing more. It took me a long time to realize that it really does take a village. I set out to work not just with children, but with their families. My goal then and now is to be that person that tells every parent I meet, “the minute you say can’t or won’t it’s game over. It should always be they will, it’s just when.” My role as an Early Interventionist allows me the privilege of being the one many times who is sitting with a parent, or the first call they make when they hear those words, “your child has Autism.” Their world is turned upside, and most likely their head is just spinning. It is my sincere hope that I can at minimum be some comfort to them as I tell many parents I meet that it isn’t going to be an easy road, but it is going to be a beautiful one. I will tell every parent I meet that all the therapies, all the social stories, communication devices, IFSP/IEP meetings, 504s, behavior management protocols, and more acronyms than you can fathom are only one piece of the puzzle when it comes setting your little one up for success. You as a parent/caregiver are the other piece because without your support, and your determination they aren’t going to get there. My heart is full when I am able to help parents not only advocate for their little one, but also see what I see; a little one who is going to teach their family and the world a little bit more patience, compassion, love, and joy, just in their own time and their own way.

Amber Pullmann, Early Intervention Services Coordinator

Grandpa and Grandma Thoughts

We are the very proud grandparents of six amazing precocious grandchildren. They make us smile and laugh out loud. Milo is the youngest of our six grandchildren. He is the only one diagnosed with Autism Spectrum Disorder(ASD).  At first we didn’t want to believe it was true.  We kept saying he is fine, he will be fine, don’t worry he’ll be fine.  But he wasn’t fine.  An early diagnosis confirmed Autism and our hearts broke. He is mostly non-verbal, far from being potty trained and struggles with heightened sensitivity which leads to bouts of stimming.

As grandparents who live several hours away, we long to connect with our enigmatic grandson.  To enjoy with him, as we have with the other grandchildren, the sweet pleasures of sleepovers, cuddles on the couch, silly conversations, rides in Grandpa’s truck to get donuts.  To hear him say “Grammie” or “Papa” would be pure joy.  These would be normal grandparent expectations.  But being grandparents of an Autistic child you need to re-think ‘normalcy’.  Milo’s diagnosis was not something that should have been feared, but instead gave us a better understanding of what our relationship with him could be, that his unique gifts could be enjoyed.  For now, our sweet pleasures are fleeting glances in which he makes eye contact with us. “He sees me!  Hi Milo, I’m Grandma and I came to visit you!”   Or moments when he takes our hand, steering us to a toy or a door to go outside to play. Or he might stand next to us, allowing us to sneak in a quick hug and kiss.  It is in these precious ‘connections’ that we become Grandma and Grandpa to a very special little boy called Milo. We love him for who he is and embrace his autism and all of its wondrous color.

Grandparents have a unique role in the lives of their grandchild who has ASD. Even if you live far away or have your own challenges, you can still be an important source of support, guidance, connection, advocacy and love

We take great pride in our daughter Sarah’s strength and commitment to her son. When the whole family was saying ‘he is fine, he will be fine, don’t worry he’ll be fine’ she listened to her heart instead. She knew he was not fine and sought out professional advice from experts. Today, thanks to an array of early intervention services, including applied behavior analysis (ABA), and the unwavering support of his loving mom, Milo is 4 years old and thriving.   In the two years since his diagnosis, Milo has improved upon many of the challenging behaviors that manifested early on. Thanks to the services he has received, we now have no doubt that Milo will live an extraordinary life, and we feel deeply fortunate to have a front-row seat from which to observe it. Milo is a walking testament to the crucial importance of intervening early with behavioral therapies and educational supports.

Every child is strong when given the right tools; every child is beautiful when loved.