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Staci Grosser has a 10-year-old son who was diagnosed with autism when he was a toddler. If you missed her story of Renner’s autism journey, click here to read it. Then come back here to read her tips. We’ll start out with a few of her tips for friends of parents whose kids have autism or other special needs. Then we’ll move on to advice for other autism parents.
Staci’s Tips for Friends of Autism Parents
Ask them how they’re doing. Ask how you can pray for them. Ask if they need a hug. If you’re not with them, text them. I don’t often have time to talk on the phone, so don’t be offended if your friend doesn’t answer a phone call. But let her or him know you care.
Offer Your Support
Especially at first (and even still), I needed so much emotional support because I was hurting and grieving. Listen to your friend and be there for them. Let them talk without judgment. And then follow up. Don’t let it just be a one-time deal.
Think Twice About Giving Advice
Advice is a double-edged sword. It can be annoying to the recipient yet can be good at the same time. Make sure what you’re offering might actually be helpful for the person’s child, and don’t push it.
Staci’s Tips for Parents of Kids with Autism
Allow Yourself to Grieve
When a diagnosis of autism comes, so does grief for all the things your child (and you) may not be able to do in life. Autism alters your life. You have a child, and in your head you plan all the play dates, you map out vacations, you think about the perfect school, and so on. You imagine them graduating from high school and possibly college. You think about their future marriage and the grandchildren they’ll someday give you.
But then you get a diagnosis like autism, and you don’t know if any of that is ever going to happen. Everything is up in the air. He may be able to do those things. He may not. He may be able to hold down a job. He may not. He may be able to get married. He may not. And the worst part is, he may be able to talk . . . and he may not. That was the hardest for me. That was the most grief I have ever encountered. I didn’t know if my son would ever be able to talk to me. You have to allow yourself the time and space to grieve, and realize that it will take time.
Find a Support Group
I’m part of a special needs group called Gladiator Moms. We get together every so often and cry with each other, give each other advice, and just be there for each other. Last month I went to the group and bawled the whole way there because I was having a horrible day with my son. I got there and was just able to unload, because everyone there gets it. I was able to say, “It’s horrible. I’m at the end of myself. I’m emotionally spent. I don’t know if I can take another second of this.” And they understood. They were able to listen and to give me advice based on what has helped them.
Support groups are also a great place to get tips, ideas, and advice for things like what you need for IEP meetings at school, which therapists are good, which medications others have tried, and so on.
My group was started by a friend who I met in a Bible study and reached out to after she opened up about her daughter’s recent autism diagnosis. I was able to give her some support, and then she decided to help other people get out of that place she was in by creating Gladiator Moms. So if you can’t find a group, start one!
My husband has also met with other men whose kids have been diagnosed with autism, which has been very helpful for them.
Be Sensitive to the Needs of Your Other Kids
There are times when my daughter just needs to get away from the chaos when my son is having a bad day. I might plan a play date or a special outing with just her.
Sometimes the two of us will go for what she calls a “walk and talk.” She’ll ask me why her brother does (or doesn’t do) the things he does, and I’ll explain that it’s because of autism. This is often followed by her asking why he has autism, and I say, “I don’t know. But all we can do is love him and try to get him better. That’s what Mom and Dad are trying to do. We’re doing everything we can to get him feeling better, to get him happy, to get him not scared of things, so that he can have fun with you.”
It’s also interesting, because I can’t discipline her the same way I discipline her brother. I’m quicker to give her a consequence than I am him, and she’s not always happy about that. But as with any siblings, you need to take their individual needs into consideration.
Be Specific with Consequences for Misbehavior
Speaking of discipline, we met with a behavioral therapist to help figure out how to give my son consequences when he disobeys. The therapist suggested we create three different consequences: one for a minor offense, one for a moderate offense, one for a major offense. So if Renner hits his sister, that’s a major offense, and he gets a major consequence for that. But if he won’t eat his dinner, that’s a minor to moderate consequence, depending on the situation.
Know It’s OK to Use Medications
I know a lot of people want to go the homeopathic route, like I wanted to do, and are against using medication. But putting my son on Prozac and Periactin has given him a quality of life that he could have never had without it. He doesn’t fight to take his medicine anymore. He doesn’t fight to not take a bath. He doesn’t fight to stay inside all the time.
A few weeks ago we took him out to the bowling alley and we played air hockey and skee-ball, and he grinned and giggled and jumped and laughed the entire time we were there. He bowled strikes. He beat his sister at air hockey. It was amazing.
Bowling alleys are loud, there are lots of people in them, and there are lights on all those games. Before Prozac, he would have screamed because the lights were too bright and they flashed too much. He couldn’t have coped with it. It would be too much. Now he can deal with it for short periods of time. We were at the bowling alley for two hours, and he handled it beautifully.
Medication has created a better quality of life for the whole family. His sister was happy that day at the bowling alley. They got to play air hockey together. They’ve also been playing T-ball together. (And just a few months ago he was terrified of balls!)
Talk to Your Child About How He or She Feels
I ask my son about how he feels, and I give him ways to explain himself, since he has trouble communicating it without assistance. So I’ll say, “How are you feeling today?” And I’ll hold my thumb up and say, “Are you feeling a little bit bad?” I’ll hold my thumb sideways and say, “Are you feeling a medium bit bad?” And then I’ll hold my thumb down and say, “Or are you feeling a lot bad?” And he’ll respond with his thumb and tell me how he feels.
We ask him about his medications and how they make him feel. After starting a new one, we’ll ask things like, “Do you feel better at school? Does it make you hungry? Does it make you feel sleepy?” And so on. Find ways that will help your child communicate how he or she feels.
Understand that There’s an Ebb and Flow
You go through seasons where autism is better. Your child is acting better and feeling better. Usually in summer, my son does better because he’s not in school. There isn’t as much pollen in the air, which means he feels better. He does well in the fall and then starts going downhill around Christmastime, and that lasts through the spring. And then in summer it’s better again. It will be different for your kid, but if things are bad right now, do know that it won’t always be that way.
Find Safe Places They Love to Go
My church has a special needs ministry called City Friends, and that’s Renner’s favorite thing to do in the whole week. He has to be there every Sunday, and if he doesn’t get to go, it’s not good. He loves his teachers, and they love him. He comes up with great stories and draws maps for them. And he tells them a bunch of interesting information and they just eat it up. So find something that your kid loves to do, and do it!
Pay Attention to Your Marriage
There’s a higher rate of divorce for autism parents (and other parents of kids with special needs), likely because everybody handles the extra stress differently. My husband copes with stress completely differently than I do. I don’t cope with stress very well, but it’s good that he deals with it better than me. He can give me a different perspective on it. So remember you can learn from each other and support each other instead of focusing on how you do things differently and getting angry about it.
Remember You Can’t Do Everything
Life is stressful. Life with a child who has autism is extra stressful. And that means you can’t do everything for everyone else that you’d like to. I want to help other people with meals and baby showers and so on. I usually feel guilty when I don’t participate in a meal train. I always want to be a part of them, but I often can’t even get dinner ready for my family much less make one for somebody else.
But all I can do is all I can do. I’m just trying to get through the day. What is great is that when I’ve felt like I wasn’t doing something to help someone, people have said, “You were there. You texted me. You called me.” People will understand when you’re not able to do everything. Just let them know you care. And give yourself a break!
I want to thank Staci for sharing her story in order to bring awareness about the realities of life with autism and so other parents can know they’re not alone. I hope her story and tips are helpful to both autism parents and their friends, and that through these posts they’re inspired to live well and serve others.
Organizations That Support Autism Parents and Kids
- The Autism Society of America:The Autism Society of America has been improving the lives of all affected by autism for over 50 years and envisions a world where individuals and families living with autism are able to maximize their quality of life, are treated with the highest level of dignity, and live in a society in which their talents and skills are appreciated and valued. They provide advocacy, education, information and referral, support, and community at national, state and local levels through our strong nationwide network of Affiliates.
- Autism Speaks: Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of people with autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.
- International Autism Organizations: The Autism Speaks website includes a list of organizations all over the world that support individuals with autism and their families. Organizations are searchable by country name.
- PATH International: The Professional Association of Therapeutic Horsemanship International (PATH Intl.) promotes safety and optimal outcomes in equine-assisted activities and therapies for individuals with special needs, including autism. Click here to find a center near you.
Note: This blog and author do not endorse or have personal knowledge of the abilities of the organizations listed. These resources are not intended as a recommendation, endorsement, or referral, or as a tool for verifying the credentials, qualifications, or abilities of any organization, product, or professional. Readers are encouragement to use their own judgment and request references when considering any resource associated with diagnosis or treatment of autism, or the provision of services related to autism.
On Wednesdays I upload a post profiling someone who lives well and serves others in everyday and extraordinary ways. If you want a reminder, I will be sending an email update each week with information about new posts and resources.