At Mindr, we know how important it is to find your tribe. Connecting with others who “get you” and what you are going through - all of the sweet, crazy and frustrating moments - is critical to maintaining our mental wellbeing. As parents to children with developmental differences, Gena Mann and Carissa Tozzi realized there was a significant need for an inclusive community specifically for parents whose children have special needs. So they decided to create one. What started as a shopping platform for children of all abilities soon became a social platform where moms can meet other like-minded women in their neighborhood. The childhood friends launched Wolf + Friends on October 1st. The free app is designed to be the resource that Gena and Carissa wished they had when they first became mothers. We applaud their creation of a judgement-free space that allows members to connect with other local parents and find content specifically catered to the needs of their children from vetted specialists. We asked Gena to share with us her perspective as a parent with two special needs children and her belief in the importance of celebrating tiny victories.
When my boys were toddlers, it was almost impossible for me to leave the house alone with the two of them. Jasper was nonverbal with an autism diagnosis, and Felix was clearly symptomatic of receiving some sort of diagnosis down the line. Neither of them had any sense of danger or felt the need to stay near me for safety. If not strapped into a stroller, one would literally run off in an instant. It was not only possible, but probable that either one (or both) would have a knock down, drag out tantrum over seemingly anything - a door not being closed, a misplaced Grover toy, a long line. My stomach was in knots all the time waiting for a meltdown and the looks from strangers that would surely follow.
As they grew, meltdowns were replaced by a slightly easier time going to a handful of places that were familiar - the beach, one hibachi restaurant in town, the grocery store - but trying new things was still incredibly stressful. What if there was a long line? What if we can't get the table we sat at last time? Even when in a good mood, Jasper was way louder than your average child, making odd noises, dancing in public and flapping his hands. It was even hard to go to friends' houses as my boys couldn't play with our friends' kids and I could only handle so many questions from friends' inquisitive children about why mine didn't answer them or talk at all for that matter.
I’ve relaxed a bit and learned that celebrating tiny victories is something special needs parents do… because the big victories are sometimes few and far between.
Now that my boys are 14 and 16 (and I have two “typical” girls ages 11 and 4) the knots in my stomach, while not completely undone (I do have 4 kids!), feel looser and I have begun to feel like planning things with my children isn't much more overwhelming than it is for other parents. I’ve relaxed a bit and learned that celebrating tiny victories is something special needs parents do… because the big victories are sometimes few and far between. It’s these small, positive shifts in the way your child behaves, learns and lives in the world that feel unbelievably amazing every single time.
It may be difficult to understand what I mean by “tiny victories.” This summer was filled with these moments that felt both small and huge, and I’d like to share with you three of these victories from our life.
I kind of still can't believe that the kid that used to need 2 paraprofessionals to drag him from my car into school, was now calm and confident and mentoring other kids! I couldn’t have been more proud and neither could he.
First, after many years of attending different day camps with various levels of support, my son Felix, who has high functioning Autism Spectrum Disorder (ASD) worked as a Counselor-In-Training (CIT) at a local Y camp. He is an avid guitar player and he brought his guitar to camp and played music for the kids throughout the day. He also helped out with some of the younger kids with autism. He told them he remembered what it was like when he was younger…that he had a hard time listening and following directions too. I kind of still can't believe that the kid that used to need 2 paraprofessionals to drag him from my car into school, was now calm and confident and mentoring other kids! I couldn’t have been more proud and neither could he.
Second, my son Jasper suffers from reflux, one of the many joys of autism. In August, he had to have an endoscopy. It was the 4th time he had to be put under general anesthesia for medical necessities. My husband and I woke him at 6 am and took him to our local hospital for the procedure. I thought about the times we had done this when he was 6, 8, 10. Then, it required both of us to keep him in the room until the doctors were ready because it was excruciating for him to be kept waiting. And when it was time to insert an IV he needed to be held down by both of us as he couldn’t sit still. This time, while not the experience we would have with a typical 16-year-old - he couldn’t tell the nurse the last time he ate or how tall he is - it was so much less stressful than it had been. He followed directions, he waited quietly (albeit while Raffi played on his iPad), and when he came to, he sipped his apple juice, waited patiently to have his IV removed and got dressed. I felt so grateful for how far he has come as I walked out of that hospital with my sweet boy who is now 10 inches taller than me.
Finally, last Sunday evening, having fed my kids nothing but pizza and french fries for the better part of the weekend, I decided I needed to make a salad. Upon looking in my refrigerator, I found no lettuce (not surprising), and so was left with a dilemma. Do I pile my 4 kids into the car to drive to the market for lettuce or is it possible that for 20 minutes, I can leave them home alone and have a quicker, easier trip. When my husband is working or traveling, I am fortunate to almost always have a babysitter with me. In years past it would have been impossible to leave the house with this crew without a second adult, but lately, Jasper has grown much more independent and trustworthy. He listens, he would never leave the house alone, and he doesn’t even leave sinks running with stoppers in the drain like he used to. Felix is an incredible rule follower and always looking to help, and my 11-year-old daughter is responsible and creative and was dying to watch her 4-year-old sister. I went for it. I left Felix (14) in charge of Jasper (16) and Lulu (11) in charge of Indie (4). I went to the store and returned 25 minutes later with lettuce and to no disasters and kids who I think were extremely proud of themselves for staying alone.
These milestones are obviously so different from the recitals, graduations and soccer games that many of my friends celebrate with their kids, but we have learned to feel incredibly grateful for our tiny victories.
Gena Mann is the co-founder of Wolf + Friends and mother to four. Gena and her co-founder mama of one, Carissa Tozzi are former NYC based media executives. The Wolf + Friends app is free and available in The App Store.