Today I am grateful to be able to share this Guest Post by Bobbi Sheahan, with Kathy DeOrnellas, Ph.D
Your friend’s child has autism, and your relationship is changing. Let’s face it: you feel like you’re watching your friendship slip away. You say, “If there’s anything I can do…,” but your friend doesn’t suggest anything, and you feel like a jerk. You see less of her than ever. Can This Friendship be Saved? Yes, it can, and it may be easier than you think.
1. Let’s start with the real practical stuff: We’re not avoiding you. It can sometimes be hard for us to get out of the house with our kids, or to get around to making a meal. Wanna be a hero? Make dinner. Don’t talk about it in advance, because your friend will say “No Thanks” in some combination of independence and embarrassment. Just call or text to make sure someone will be home, and let her know you’re about to leave a cooler on their porch. Better yet, include paper plates so there’s no cleanup. I have a neighbor who has TWICE in the past few months called me and said, “I made too much chicken salad,” and has shown up with cornbread and cookies to go with the salad. This is kindness, my friends. Your friend may turn you down for book club or an evening of margaritas, but it’s not because she doesn’t want your company. She’s exhausted and can’t face the ordeal that it would be to get out of the house. Who knew the power of chicken salad? It’s the thought that counts, says Nagla Moussa of Texas: “Compassion is key, offer to do the laundry or pick up groceries if you don’t know what else to do!”
Cooking isn’t your thing? No problem. Bringing over coffee or a dollar store balloon might work too. Offer to go for a walk or to the grocery store with Mom or Dad at an odd time – like late in the evening or at 5 in the morning, when the rest of the family is in bed. An alternative would be to offer to come and hang out at the house with the kids for an hour while Mom grocery-shops solo. One trip to the grocery store with a child on the spectrum who is experiencing sensory overload would make a believer out of you.
2. Take their other kids with you the next time you go to the park, the library, or the circus. The siblings of kids with special needs are some of the most delightful people around, and it’s wonderful to give them a chance to go and Just Be a Kid with another family. As I write this, my daughter is at a Fall Festival with her best friend’s family.
3. Listen more than you feel like you should have to. Especially when the diagnosis is new and frightening, we need to talk about it, probably more than you ever wanted to hear about it. We’re sorry, but will you (pretty please) listen anyway? I recently read this article http://www.nytimes.com/2011/10/23/fashion/of-course-shes-worried-social-qs.html?_r=2, which confirmed My Fear That I’m a Terrible Bore Who Doesn’t Talk About Anything Else. If you can be patient when we need to Talk About Autism Yet Again, we will eventually tire of the topic and you will have our eternal gratitude.
4. Be willing to talk about things OTHER than special needs. Yes, that may sound like a contradiction of what we just said, but really, it’s not. Make your friend laugh. Drag him out to the movies. If he or she can’t get away, bring over a funny DVD and watch while the kiddos are asleep.
5. If you are inviting the family over, ask specifically about how you can accommodate, and try to follow the parent’s lead about the extent to which the child will be involved. No gluten? No problem. Your Halloween decorations or your perfume may trigger a meltdown? Easily fixed. They are leaving their child with a sitter even though you’ve insisted it’s okay to bring her? That’s fine too.
It’s much easier for us to tell people what we really need to do if they let us know that they want to know. Otherwise, we will probably decline perfectly wonderful invitations just to avoid being an imposition on you.
For example, a child with autism might have a favorite video that can be the default setting when the socializing gets to be too much. Kids may have certain foods that they must avoid, or certain colors that freak them out. A child may need safety precautions that would be easy for you to take. The family may want to be home earlier than most, so dinner could start early. Jeannie, an adult whose only sibling, a sister, has special needs, says: “Ask the parents if they want to also include their child to join everyone when they go out. It is hard to find a sitter for someone who is an adult and has special needs. Including them is so nice because they already feel isolated and left out as it is.”
6. Ask the questions that you really want to ask. Ask your friend leading questions. Ask her to tell you her greatest joy or her greatest fear or The Thing She’s Afraid You Won’t Want to Hear. It may be, “I’m afraid my kid will run around naked or break stuff at your house,” or “We may have to leave before the screeching sends the neighbors running.” Whatever it is, it’s a kindness to let her know that you really do want to hear it. I’m sad to tell you this, but many people don’t want to deal with another family’s struggles, and you may feel avoided when in fact the parents simply don’t want to burden you. So, just ask.
A “Mom of an Aspie” who blogs at www.aspieside.wordpress.com said: ” Maybe it would be better if I just explained up front what I need in a friend… Please don’t think that I am selfish but any plans must be made around my child’s schedule because routines are so important to my child well-being. If I have to leave unexpectedly or cancel last-minute, I am really sorry and I would appreciate your support and understanding because I am already facing very stressful circumstances.” Yes, this is a tall order, but you are a good friend. Otherwise, you wouldn’t have read this far.
Another thought: One reason that your friends might not speak up is that they have learned, through difficult experience, that when they try to simply explain things, people think that they are being given the overwhelming (not to mention impossible) task of Fixing It All, or, as Claudia put it, “Or they think you are looking for charity. Sometimes a listening ear is enough.” She went on, “Don’t become a know-it-all or fix-it-all. Be there and let them know you support them.” Err on the side of asking questions rather than giving advice or opinions. It’s hard to do, but it will make you a hero to your friend.
7. Give her the benefit of the doubt. Here’s a tough one. What if you’ve judged your friend and thought that you were witnessing bad behavior (and/or bad parenting) when in fact a child may be having a sensory issue or simply be overwhelmed? Did I just make you cringe? Sorry. It’s an understandable mistake; we (that is, the parents) often make it too. Venessa, a reader, has some advice: “Try to understand that the parent IS addressing the issue and these things take time–sometimes a LONG time — and you’re just seeing a snapshot. If it doesn’t adversely affect you; and particularly when you see that this child’s siblings seem pretty well-adjusted, try to have a little faith in this parent.”
Venessa then reflected on the isolation that a special needs parent often feels, compounded by fatigue: “This parent is probably tired and exhausted (like you are); only the struggles with special needs kids have made her feel lonely and incompetent.”
We said this a few paragraphs ago, but it really is true. If you’ve read this far, I know that you’re a good friend. We’re not trying to be selfish; it’s just that we’re at our wits’ end. This may sound like a lengthy list of demands, but it’s really just a renegotiation of the relationship, which is what is constantly happening in any healthy relationship anyway. (Isn’t it?)
Friendship is a two-way street, and you really can have a healthy friendship with the parent of a child with autism or another special need. They — I mean we — really need you. Paradoxically, we seem less available to you than ever when we need you the most. We don’t expect you to always take a back seat or to solve our problems; we just want you to bear with us a bit as we do our best to be a good friend and a good parent at the same time. It will get better with time as we both get used to the rhythms of life with special needs.
So, to summarize, we appreciate your patience. Really, we do. We also like it a lot when you feed us and listen to us. We’ll be grateful, and we’ll do our best to make it up to you over time. Plus, in your hour of need, we really hope to be there for you too. Through necessity, we tend to be good in a crisis.
If you’d like to know more about this subject, another excellent resource is Parent Coach Connie Hammer’s wonderful article, “Parenting 101: Where Did My Friends Go? Dealing With a Shrinking Social Circle After a Diagnosis of Autism.” http://www.momeomagazine.com/parenting-101-where-did-my-friends-go-dealing-with-a-shrinking-social-circle-after-a-diagnosis-of-autism/ From the emotions that a parent feels in response to the diagnosis, to the realization that Johnny isn’t going to be welcome in some playgroups, to the reality of having one’s life consumed by therapies, author Connie Hammer goes deeper into the parents’ point of view, and I recommend it highly.
Just after I finished writing this article, a friend pointed out a lovely post on the same topic, which is found on the perfectly-named blog “I Love You Song:” http://theiloveyousong.blogspot.com/2011/10/10-ways-to-help-family-living-with.html
This is the first of two articles. In our next article, it’s your turn! That’s right; the friends will talk back. If you have a friend whose child has autism, and there’s something you’ve always wanted to tell them (or ask them), please email the authors at email@example.com. If we use your comment, we’ll say so unless you indicate in your email that you’d prefer to remain anonymous.
Bobbi Sheahan and Kathy DeOrnellas, Ph.D., authors of What I Wish I’d Known About Raising a Child With Autism; A Mom and a Therapist Offer Heartfelt Guidance for the First Five Years (Future Horizons, 2011). It is available at www.fhautism.com and wherever books are sold.
So so true, I find that people for whatever just do not think we need help, my son is now fourteen, and even family have really never thought I might need assistance even though I always talked about the difficulties, It has been so hard, and I think there needs to be more awareness and understanding of just how hard parenting an autistic child can be. Thankyou for sharing this.
Bobbi is wonderful! Many have given her post to their family. You can also read the story of three inspiring people who are helping to change world views including an Aspie adult from my home page. Best Wishes!
Perfect post! …just perfect! Thank you so much for this. I might even reblog at some point if that’s okay? 😉
Bobbi is the best. I tweeted her to let her know about your request. Her response was “Cool! :D”
This is one of the best articles I’ve read! It gives great advise and connections you with others who’s children has autism.
Glad you liked it! Bobbi is amazing and I am honored that she wrote three posts for me.
We felt very isolated at times when our kids were growing up. Part of the reason is that our friends/relatives did not like to be around our kids. It’s tiring. And uncomfortable. It was just easier for them to do things together without us. That way they don’t have to worry that our kids can’t swim or ride a bike.They didn’t have to watch their kids to the same level of alertness that we needed to watch our kids. Their kids could be friends with each other’s kids. Our kids could be friends with, well, us.
Bless those who reach out and stay with their friends with kids after diagnosis. May their kind multiply.
I agree! I hope those that reach out and offer support multiply!
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I have great friends but still feel quite isolated. They ask a lot of questions and the best ones don’t try to tell me how to deal with the problem. For that i thank them!!
I used to feel that way too, so I understand, but the blogging and tweeting community has helped me tremendously and I love that many of our friends watch things on autism and read books on the topic to help them understand. It means the world to me that none of them judge my daughter or us.
Thanks for this helpful post… just like an extension to your awesome book! Bobbi Sheahan and Kathy DeOrnellas, Ph.D., the autism community and all parents with special needs children are lucky that you teamed up to give us this great advice.
I agree! I love Bobbi’s post and the book. She and Dr. DeOrnellas make an excellent team. I have told both of them that I wish we had a Dr. DeOrnellas and a Bobbi when we were going through the process of obtaining the diagnosis. Life would have been so much easier. I am honored that she found me on Twitter and reached out and that she has done three excellent guest posts here.
Hi Bobbi, First response? What a loving real commentary! You got it girl! Thank you. Fatigue and isolation. Magic words. Friendship. Well said. I better thank the twitter followers that let me know too! Happy New Year. Tweet hug, ANNE
Anne, thank you!! I am so touched by the response to this article. Friendships don’t have to be lost when our circumstances change, but too often they are. I hope that many folks, on both sides of this particular fence, will be more willing to simply reach out and saying, “I don’t know what to say, but I’m here.”