When I became a mother I had an entire plan in place. I was so excited & ready. I devoured any and all literature about pregnancy and parenting that I could find. The name was chosen. Maximir. Unique and strong. I researched best practices for everything baby & child. I had a long list of activities planned for my little one. Play Groups, Rubber Duckie Swims and Tot Gym. Beyond that, I eagerly anticipated Soccer Practices, Music Lessons, Birthday Parties, and surrounding my new little one with loving family & community.
The plan was derailed. During my Maternity Leave while I spent our time happily at the Play Groups, I noticed something. My Max was not behaving the same as his peers. He could play & be social with familiar & engaging faces, however he also had an uncanny ability to shut people out. His play skills were completely different from the others. He focused on the minutest details of cars & did repetitive things. The living room floor was covered with lines of blocks, Little People, and cars. There were no words when there should have been. Tantrums that lasted hours. Hand Flapping. Autism.
I went through an intense mourning process when I realized that Max has a condition that will make him different & hinder his ability to live the life I was expecting. That, along with navigating the vast maze of treatments, Government agencies, Private agencies, IBI, long waitlists and the unbelievable financial toll it took, sunk me into the deepest darkest hole I had ever been in. I was completely overwhelmed. My son’s social discomfort intensified as he got older. His sensory issues made the world difficult to navigate. I now had to deal with ”Undesirable Behaviors”. He was so stubborn. If Max wouldn’t do it, it was not going to happen. His ability to disengage became a huge obstacle. It became impossible to socialize. Our social circle diminished to nothing. We are no longer in contact with both the Best Man & Maid of Honor at our wedding. They couldn’t deal.
My life became all about getting Max what he needed. Our days were filled with IBI, appointments, and any enrichment opportunities that I could find at little or no cost. During this time, I found new friends and a lot of hope. This community welcomed us with open arms & helped us in any way they could. I was able to get some perspective. There were places we could go & things Max could participate in so that he could be a part of the world. The community I wanted him to have.
I was able to start seeing the gifts that Autism was going to bestow on me.
The Community of people who work with kids & adults who have disabilities are true Heroes. They came into my life & taught me the skills that I needed to help Max achieve many milestones. While our “friends” ran for the hills, they rolled up their sleeves & jumped into my messy, chaotic world without hesitation. Without their expertise, our family would have crumbled. Thanks to the help of many professionals, Max is developing a skill set that will carry him through life. He would not be able to sit at a table to eat or learn without them. He would not be able to communicate, spend the day in a classroom, or tolerate peers. He would not be TOILET TRAINED without them! I will forever be in debt to the Senior Therapist who came up with what he once called, “The Craziest Toileting Plan I’ve Ever Come Up With”. I found that with these people, I could share any problem. The problems that come along with Autism are complicated & sometimes require unique solutions. This is a solution oriented bunch. They have tons of ideas and are able to think outside of the box. We work together to ensure my son’s success. They care as much as I do. These people CHOSE to join me in the battle to prepare Max for the world that awaits him. I’m not the only parent who cries when we say “Goodbye” instead of “See you tomorrow.”
The Community of Families that we have come to know is phenomenal. Since our lifelong pals became scarce, I’ve met new families. They are such an integral part of our lives. We are an extended family of sorts, connected by our struggles & victories. We share stories, resources, and the highs & lows of Autism. There is no shame or embarrassment when I ask for help or advice or I just need to vent with another Parent. We hug each other tight when we’ve just met. We advocate for all our kids. We have the Best Mom’s Nights Ever! There is an E Card out there that goes something like this – “Autism Moms : Always ready to bring over a bottle of wine or join you in a street fight – Because we get it.” So true! We are a strong group. Don’t mess with us.
Through all these great Professionals & Families I have learned how to teach my son. I have learned how to incorporate, ABA, Speech Therapy, Music Therapy and Natural Environment Teaching into our lives. I have learned acceptance & patience. I have learned to lend my voice to stand up for those who do not speak. I have also learned so much more about people with Special Needs – a group dismissed by so many, while they work so hard to attain skills and find their own voice. I cannot imagine the frustration one would face in a world that is socially, physically and emotionally challenging. Still, they manage to bring so much joy to those around them. I feel so blessed to be a part of their lives & I am a better person for it.
The most amazing gift that I have received is the gift of my son.
Maximir has so many unexpected talents & the most unique view of the world. He is kind and caring. He is fun. He is musical, now working on drums. When he sings, (he sings more than he talks) he has the voice of an angel. He shares my love of long walks in the woods. That is where we spend some of our best times. He is insatiably curious and loves to take things apart to see how they work. And there is a joy in him that is so infectious. He does not see the bad parts of the world and makes me forget them too. When he laughs the whole room laughs. He puts in so much effort to learn things that come naturally to others. His hard won achievements keep me smiling for weeks. Even without many words, he can connect to your soul like no one I have ever known. Although he is not what I expected, Maximir is unique & strong and thanks to him, I am much stronger too.