The Moms have existed ever since we started meeting each other at special ed school presentations. First we were friends – mainly because our kids were classmates. Let’s face it, our special needs children didn’t have lots of friends. They weren’t inundated with sleep-overs or birthday party invitations. We were puzzled, embarrassed, and increasingly frustrated as we struggled to learn enough about our kids’ disabilities to function as competent parents. Remember the stages of grief people go through when they lose a loved one? Parents of special needs children go through similar stages, although we don’t usually get to the ‘acceptance’ stage for many years…instead we bounce back and forth from the ‘anger’ to the ‘denial’ to the ‘grieving’ stage and back again, over and over. It’s exhausting.
The only ones going through this same process are other parents in the same situation. It could be either moms or dads. In this case, it’s been moms, but please don’t think I’m discriminating against dads.
What the Moms Accomplished First:
So we met at parent meetings and presentations, exchanged phone numbers, and began to forge friendships when our kids were little. At one point we became organized enough to choose a name for our group (and I can’t remember it), but we were sharing information with each other about our own experiences with our special needs kids. Best doctors, best haircutters, dentists, parks, restaurants, you know. We started going out to the movie theatres – our kids all in one row and the Moms in a row or 2 behind them. Enough for them to have social space with their friends and for us to chat with each other. We visited a planetarium, restaurants, and saw local theatre. One family generously had a Halloween party every year for the kids and their families. That same family had a rocking New Years Eve Party yearly too. The Moms went out to dinner over the years, just us. Sure there were smaller factions within the Moms, but that’s OK. When the oldest kids graduated at age 21 from high school, those mothers noticed they were having social withdrawal. This should be something every parent expects for their special needs kids at that age. We saw them experience depression, increased anxiety, and anger. As those same mothers attempted to manuver in the DDD system and get their adult children services that would both help them with employment and keep them socially-connected with others, they realized the system the state of NJ had set up was inadequate. It was time for a reality check.
“What would they want? our kids…what would they want to be doing for fun?”
We asked ourselves this question. Often. But if you know any mothers of kids with special needs, you know they are creative and persistent (pushy? definitely. driven? -for sure. Desperate? -often). We all had these qualities in common. OK…some ground rules for starting stuff on your own:
If you want to start something, you need to find a space, someone to run it, helpers, and materials. And your adult children have to buy into it too. Of course they do, because they’re the point of this whole endeavor.
Our first activity was Art Class. We found a space for free, bought the materials ourselves, and found a sweetheart of a high schooler to run the class. She brought a few friends to help. There were between 8 and 14 participants each time. While music played, our kids followed directions to create arts and crafts and chat and joke and see friends they had in school but now had no way to hang out with. The highschoolers became their friends too – which was perfect because our kids didn’t want their moms running things for them anymore. The Moms got something out of this too. We sat away from the art class and talked. Vented. Shared the good and the not-so-good. This was a big success for both our kids and the Moms. We saw with our own eyes how much our kids loved to see each other. It inspired us to come up with other activities.
The next idea was a Book Club. My son reads at a 2nd grade level, and we are pretty sure he is dyslexic so I wasn’t too enthusiastic about this one. The mom who had this idea knew that several of the adult children who might want to do this also had reading/comprehension difficulties, so she had a brilliant idea: read the book while listening to it being read on CD. We chose the first Harry Potter book, and she played Jim Dale reading it on CD while the kids followed along in their books. Our site was the county library – and they were happy to give our group a space for their book club (how many kids read anymore? although school was over for them, our adult children still needed the practice reading, otherwise they would likely lose skills they had worked hard for in school). At the rate of a chapter per meeting, twice a month, it took us a year to finish the book. At the Harry Potter party, we watched the movie of the book they had just read and celebrated all things Harry Potter. They went on to read the second Harry Potter book, and then the Princess Bride. We didn’t have a CD for the last book, so we moms took turns reading. Weeeeeell, definitely not as professional as Jim Dale, but we did a darned good job. For this activity we had between 5 and 8 participants mainly because the room was small and 2-3 moms sat in to help. Oh, and a librarian kept shushing us when there were lively discussions, so if you do this, keep the noise down!
The beautiful thing about Moms is that there is no judgement when we’re together. We know that every mom does things differently – makes different choices, has different rules and different expectations for their children (whether child or adult). You have no reason to be embarrassed if your adult child is rude or silly. You just handle it with your kid and continue on. Moms are direct when they see something wrong, and they are forgiving. Moms have been and still are some of my closest friends. Moms will get you through the worst. Moms will have ideas you never thought of. Moms usually know someone you can call for help for a specific problem. Moms have been there. Moms live where you live – in the world of special needs.