I feel like the day a woman becomes a mom, there should be a big sign that appears after she births the placenta that says, "Welcome to the most amazing journey you will ever have in your life. But be prepared for some major challenges that will have you questioning everything you ever thought you knew!" Okay, maybe that banner is just way too long. We deal with challenges -- big and small, different family, different challenges. But tons of challenges.
The challenge of having a baby in the NICU. The challenge of a learning disability. The challenge of unforeseen ailments. The challenge of single parenting. The challenge of being a working mom. The challenge of affording college. The challenge of autism.
Here, moms who have kids on the spectrum share their challenges. I ask you as readers to share your own challenges and your triumphs. There's nothing like support and understanding when facing any challenge. It's how we overcome.
The work can be very overwhelming. The "odds" seem insurmountable at times. You feel at times as if hell has literally set up shop in your house. But I would say the grief over "what could have been" or "what should have been" is by far the hardest part. Each person has to come to that point at their own time. And for me it's been in stages. But I remember when the first deep wave of grief was released, I felt like it was also a cleansing. You are jumping through so many hoops to try and manage or cope, and those hopes are moving targets. If you're not careful, you can lose yourself, lose your marriage, your sense of who your family really is. At the end of the day, you want to be able to look at your family and be so grateful that you are together. Come what may. You have one another. -- Christa Proctor, mother of Danielle (age 9, with autism), Sophia (age 7, with autism), Victoria (age 4), and Annalise (age 1)
Perhaps the most challenging part has been that it's been very difficult to just drop off my child at someone's house and let him play with his friends, as so many parents of typical children often do. For one thing, he'd be more likely to play with the friends' toys, not with the friends, so there would be no social interaction without my (or another parent's) facilitation. I also find that I'm more involved with his activities even at home, because if left alone too long, his play patterns will get rote and lean toward self-stimulation. This applies to homework, piano practice, and downtime. I'm almost always keeping an eye or ear on him to make sure he's staying on track and not falling into a stimming pattern. -- Andrea, mother of 9-year-old boy
The most challenging part of dealing with Jackie's autism is uncertainty. I deal with unstable day-to-day situations, balancing medication, and sometimes frightful behaviors. I'm as uncertain about the present as I am about her future. Often I feel she has no future. -- Carole, mother to 14-year-old Jackie
Dealing with people who don't know what's going on but seem to think that they know how to handle the situation better than me. The forums here are full of stories of moms being out with their kids and having some well-meaning yet ignorant person try to tell them that their child's meltdown is the result of bad parenting. -- Jaderica, mother of 4 including Tommy, 7-year-old with autism
I think any parent faces challenges with their kids. Figuring out the best ways to support your child, whether they have special needs or not, is quite a challenge and takes energy, consistency, and a willingness to try different things when the “normal” way doesn’t work. I think one of the biggest challenges for us is the emotional one of focusing on the present and not worrying about the future. We try pretty hard to keep our focus on how we can help him and work with him today. As he gets older, the challenges are changing and becoming more social-related in terms of how he interacts (or doesn’t) with his peers. -- Ali, mother of Simon, 8, with autism, and Anna, age 1
The biggest challenge is seeing my son want to, need to communicate and not be able to fully do so. He and I both feel powerless, and he gets so frustrated -- it's heartbreaking. But he's starting to learn to type and read, and I have hopes that this new wave of AAC (Augmentative/Alternative Communication) applications for iTouches and iPhones will open up new communication opportunities for Leo and his peers. -- Shannon, mother of three including Leo with autism
The biggest challenge has been trying to get other people to accept my son, trying to get other people to understand who he is, and this community supports him -- my best friend, my family, my mom, all the people who really get a good Team RJ going. My biggest challenges surround my fear of what happens when I'm not here. Who's gonna watch out for this guy? Who's going to protect his heart? We all have that fear. Your kid doesn't have to have autism, but when you're told he'll never live on his own and he'll have to go to a group home ... they told us stuff like that at 3 years old. That's the biggest challenge for me. Knowing that I've got X amount of time to try to prepare him to have a meaningful life. -- Holly Robinson Peete, mother of RJ, 12, with autism, and daughter Ryan, 12, Robinson, 7, and son Roman, 5
How have you overcome your own challenges? What can you share to help and support families living with autism?
Image via Alexey Losevich/shutterstock