A few years have gone by now since my son Jacob’s diagnosis, and although the challenges are still there, I feel like we’re more adjusted to our new way of life. Things are crazy almost all of the time, but I can make plans now and sometimes keep them. I can function without feeling completely scattered. I can reflect back on some amazing things that have helped me get through these times. But, I can also remember some not-so-amazing things.
I hear from many parents whose children have recently received an autism diagnosis and I can absolutely relate to the stress, frustration and fear that comes with it. When friends and family ask how they can help, you become so emotionally overwhelmed you can’t form an answer, much less have the energy to ask for help. So, here are some ways people have helped me that have made huge difference to our family.
1. Instead of staring, ask.
Instead of staring during meltdowns, strange eye movements, hand flapping or when we speak in a funny voices, ask questions. I love to inform people about autism because I want people learn, accept and understand my baby. Don’t feel like there are any dumb questions, either. Asking questions translates to caring.
2. Bring the help to our home.
If you want to help with babysitting, sometimes it’s easier to babysit at our house. People have offered to babysit my son, but don’t realize he’ll be highly agitated in a new environment. But it’s hard to say, “Yes, but can you come babysit at my house?” If you want to babysit, sometimes offer babysitting at our house.
3. Bring the hang to our home, too.
If you want to hang out, sometimes it’s easier to just come to our house. My best friend often grabs some snacks at the store and then comes over to hang out with me. She knows I can’t leave Jacob much and is so considerate to come here when I can’t go somewhere special. This really helps me to unwind and feel like I’ve had some friend time without having to leave my house.
4. Set up a playdate!
Make plans between your typical child and our children with autism. This is an amazing way for us to teach our children social skills, and for our kids to feel loved and accepted by their peers. You can also use this as an opportunity to talk to your children about special needs. These are valuable lessons for all children. Don’t be scared your child will mess up or say something wrong. Trust me, as a parent of a child with autism, I’m quite used to awkward moments and tend to be extremely forgiving.
5. Be understanding when we cancel plans last minute.
This is a biggie. Children with autism often have difficult meltdowns and anxieties in certain places. Many other things can arise at the last minute. Be aware: there are simply some places we won’t even try to bring our kids. For us that includes places by lakes or pools we aren’t swimming in. But, please don’t stop inviting us places. There will be one day we can actually get out and have fun. Trust me, it will mean the world to us.
6. Don’t pretend like they aren’t there.
Make sure you say hello and goodbye to our children with autism, even if they don’t say it back. In church, there are a couple of women who make it a point to stop and look at Jacob in his eyes to tell him, “Hi.” It’s so unbelievably kind they show him such respect and kindness.
7. Ask questions about our son, but not if he’s gotten “better.”
Please know answering the question, “Has he gotten better?” is a really tough thing to do. For many families, some things get much better, while a lot of other things start getting worse. Instead, ask how they’re doing or if they’ve learned any cool new things. But, don’t avoid asking how our child is for fear of an awkward conversation. Asking the right questions is a excellent way to show you care.
8. Instead of research, send us love.
Please don’t send us research studies or the latest heal-autism-quick advice. Chances are we’ve already read it. I’ve become a research expert and am always reading studies and looking for tools for our children. Instead, send us encouraging emails, prayers or feelings of concern. That really means the world to us. Recently I received a kind email simply telling me someone has been thinking of us, and it made my day. I know I can say the same for my husband. Autism sometimes makes you feel isolated from the outside world, so notes of encouragement remind us we are part of the world, too. People have also reached out to tell my daughter how important she is, and what a great job she’s doing as a big sister. This kind of support makes her feel special and happy.
9. Cry with us…
This is for our family or close friends. There’s a time to encourage, but you’ll see it in our eyes when we just need a good cry. Don’t say, “It’s OK, don’t worry,” because often that makes me feel like I should suck it up. If you can see I need to let something out, just be there. Acknowledge it’s hard. Let us get it all out. Sometimes a good cry is just what the doctor ordered.
10. …and then help us laugh.
On the flip side, when I call you panicking about my child rubbing poop all over the window, or when we had to chase him through the house because he refused to put his pants on while a repair man was there, don’t hesitate to be extra silly and help us laugh! This really is what has helped me the most. My best friend almost daily has to remind me of the humor in the situations I call her about. Sure, it’s super stressful and scary, but you either cry or learn to laugh. I love that I can call her and know she’s going to make me giggle about what I’ve gone through that day.
It may not be exactly the same for everyone, but these things sure help us out a lot. Please share if you know someone who may need it.