The Friends of Special-Needs Parents Respond 17

and They Have a Lot to Say

I am grateful to bring you this guest post by Bobbi Sheahan, with Kathy DeOrnellas, Ph.D. and lightbulb art work by Brad Weatherford.

This article is the second of a two-part series.  Your friend’s child has autism, and your relationship is changing.  In our first article, Your Child Has Autism, And I Don’t Know What To Say, we talked about all of the ways that you could keep your friendship alive and be a supportive friend.

Now, it’s your turn. 

The friends of parents with kids on the autism spectrum responded to our first article, and they had a lot to say.   I’ll start with the good stuff (and there’s lots of it).    When I asked for a response, I knew that I was sticking my neck out.  To be honest, I felt a little Forrest Gump-ish, not knowing what I’d get.  I needn’t have worried.  Many, many of you expressed admiration, love and support.  A mom of five, who asked to remain anonymous, summed it up best:

“I can’t imagine what it feels like to look at your child and worry that she’s going to put a light bulb in her mouth. [Note to readers:  yes, my child tried to eat a light bulb.  It was memorable for all involved, including the doctor.]  When I see special needs families, I just want to hug them and thank them for bringing these precious children into the world.  I can envision, I can listen, I can empathize, but I don’t have the struggles that you have.  You are a hero.”

While you’re feeling the love, I’ll move on to some tougher stuff, such as:  They want to have enough information to act upon, while also being able to talk about other things.  Dealing with special needs may be our reality, but our friends do sometimes need a break from hearing about it.  Let’s start at the jumping-off point of our first article, which is a friend’s lament to the New York Times.  http://www.nytimes.com/2011/10/23/fashion/of-course-shes-worried-social-qs.html?_r=2,  Turns out that yes, we special needs parents Really Are Bores Who Never Talk About Anything Else.  If I were feeling defensive, I’d say that we’re just like other parents, only more so, and all parents talk about their kids.  Even so, we can take the hint and occasionally change the subject or make the extra effort to ask How Was Your Day while we’re at it.

Another part of the woman in the New York Times’ lament is that we sometimes try to diagnose our friends’ children. Unless we are “trained professionals,” it’s probably not helpful to our friends to point out symptoms of autism that we see in their children. Even if it’s true, our friends don’t like it. So, even if our best friend’s son is hyper-focusing on horses or computer repair, it’s not our job to diagnose him. Just as our in-laws and other well-meaning individuals often believe that (from their perspective) there’s “nothing wrong” with our kids, we may be looking at our friend’s son from our own perspective, which – we’ve already established – has some unique experiences behind it.

We make them tired – and sometimes we make them think — when we see autism everywhere we look.

My friend Karen, asked, “Do you have to try really hard not to see everything through the prism of autism?”   That was a tactful way to put it.  Thanks, Karen. (It brought to mind an old Fawlty Towers episode where John Cleese thought that Everything Was About The War, but if I have to explain it to you, it won’t be funny…)

Karen hastened to add that the “I’m a Hammer, and Therefore Everything is a Nail” approach isn’t entirely bad.  For example, although none of her children have autism, more than one of them chews on their clothes, and she was glad to learn about Chewelry (www.chewelry.ca) from me.

Perhaps we’re not giving our friends enough credit.  We may need to give our friends credit for being much more understanding than we realize.  After all, we chose them as friends in the first place, didn’t we?  Renee Malove is a kind, kind person who read our first article, and boy-oh-boy, did she have something to say.  I can’t improve on Renee’s words, so I won’t try. Here goes:

Chances are, I won’t mind.

If your child is at my house and they start to melt down, I won’t mind.

If you have to cancel a date because it’s just been one of those days, I won’t mind.

If you’re three hours late for whatever we had planned, I won’t mind.

If I’m at your house and they’re having a bad day, if they’re watching “The Fox and the Hound” in my living room for the millionth time just so we can have an hour to have coffee, I won’t mind.

But I can’t prove that to you if you don’t let me.

I want to hug her.

Explanations are good.  Before I ever had reason to think that autism had anything to do with my family, I attended a parents’ meeting where a mom named Eileen Moore spoke to the group about autism.  She handed out a one-page information sheet, and she brought up specific instances about her son:  “When you want to get his attention, he’s really not ignoring you.  You have to get right in front of him and get him to make eye contact, which is really hard for him.”  She explained that what appeared to be defiance was actually hyper-focusing, and that he had difficulty controlling the tone and volume of his voice.  She answered a lot of questions.  Obviously, I was impressed, since here I am writing about it more than seven years after the fact.

The things that we live with all the time – the therapies, the exhaustion, the battles over the IEP or the potty – are things we couldn’t have imagined Before We Lived Them.  Let us not imagine that our friends have more imagination than we do.  Let us spell it out a bit more than we have been.  Clarity is good.

Another example of the benefits of Just Spelling Things Out comes from my dear friend, Kassi.  When our kids were smaller, she felt awkward about the fact that the Sheahans seemed to be the permanent hosts for playdates.  She said,

“At first, I felt bad when you kept hosting us all the time and we never seemed to get to reciprocate, but over time, I saw that it really did work out the best and it really was what you wanted.   When one of your kids needed to be alone, or go to a special quiet place, or had a challenge, it was so much easier for us to be at your house.”

Kassi has earned a place in my Friend Hall of Fame for this and other kindnesses, including distributing birthday cake much earlier than planned when it became obvious that one family (we’ll call them “the Sheahans”) was going to leave much sooner than the rest.    (When I read this to Kassi, she insisted that there is much more reciprocity in our friendship than I am letting on, but I think she just said that because she’s such a champ.)

They worry about the toll on us.  Yes, they are bummed when we won’t go and have a beer with them, but it’s not just because we’re spoiling their buzz.  It’s because, to them, we look like the parents of newborns:  sleep-deprived, crabby, relentlessly living a sprint as a marathon that never ends.

They really do want to make the friendship work.  Honest.  Some of them are concerned that they’ll hurt or offend us with a question or with using the wrong term.   There’s a lot that we can do to help with that.  It’s time to ask some leading questions and really listen to the answers.

They wonder (and/or worry) about our other kids. 

This is a concern that they may not realize that we share with them.  I think that it’s a good concern to share with our friends.  We may get some helpful feedback, and it’s good for them to know what we’re thinking.  Even the best friend isn’t a mind reader.   In my book, I wrote quite a bit about the importance of not casting siblings as hostages in Autism World 24/7.

Let us not forget our fellow special needs parents!  In writing this article, I was also reminded that we special-needs parents are in a unique position to reach out to one another.  I’ve been blessed to have received a great deal of support from other special-needs parents, particularly those more experienced than I.  I try to pay it forward.  Fiona, the mom of a special-needs child, summed up the point I’m trying to make:

“I am grateful that I have been blessed with a number of supportive friends and they know who they are, they do it without expecting anything in return and love me as I come. I want to be that friend too.”

The professionals know when we’re blowing them off, and it frustrates them.  I’m going to wrap up by bringing in yet another category of friends.  I had quite a few responses from educators, and there was a definite theme.

I’m bound to aggravate some of you with this one, because I know that we have all had both good and bad experiences with teachers, school administrators, and therapist-types.

Please know that I’m including this one because I think it might help you and me and all of our children.  One of the Good Guys, who definitely qualifies as a friend to us and our children, asked me to tell you, Gentle Reader, that she’d really appreciate it if you gave her and her colleagues the benefit of the doubt.  I’ll hide behind the nearest chair while I let her share her point of view:

“We are with your kiddo every day in a much different setting than at home. We see them in different light, place an entirely different set of demands on them; therefore, keep an open mind and take what we recommend as helpful, meaningful advice….not an attack…so don’t fight us.”

I’ve seen fire and I’ve seen rain, and I could make your hair stand on end with my own horror story or two, but I am trying to take this advice to heart and remove the Brass Bra before my next encounter with a professional who is unfamiliar to me.  There’ll always be time to put it back on later if needed, but maybe I’m about to meet a cherished friend who will earn my trust and be a blessing to my child.  That was certainly the case when my family and I met Dr. DeOrnellas, my co-author; we were still reeling from some bad experiences, but I am so glad that we approached her in good faith and with open minds. I don’t even try to think about where we’d be if we hadn’t met her when we did.

Thanks to all of you who took the time to write in and let us know what you’re thinking. Friendships are important to those of us with special-needs children and it’s good to know they’re important to you, too.

I mentioned a resource in Part I of this series, but it’s so good, I’ll mention it again for anyone who may have missed it.  If you are a special-needs parent, or a friend of a special-needs parent, I recommend that you read 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/    It’s a deeper look at some of the topics we’ve mentioned here, and I recommend it highly.  Connie also Tweets at @conniehammer, so if you’re looking for a friend who really Gets It, check out her daily Tweets.  They’re good.

The Last Word Goes To The Parents.  Perhaps you’ll forgive me for giving the last word to The Special Needs Parents, but it’s time for us to say thanks.  Thanks to those of you who’ve brought chicken salad, who’ve given our kid a sensory break with a favorite DVD, who’ve offered a hug, who’ve made an exception for us and our kids.  To quote a wonderful excerpt from The Other Julia Roberts, who Tweets at @JuliaRoberts1:

Thanks if you’ve ever been a part of helping me or another family of kids with special needs in a simple way. I’ve learned that people who do those little things are the exception in many ways. You’ve probably helped me or a family like ours in a way you don’t think is much, but we do. We remember. We remember all the times we’ve had exceptions. Every single one.

Amen to that.

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  (for a special discount, use the code BOBBI at checkout), or wherever books are sold.  Bobbi would love to hear from you at me@bobbisheahan.com.

Mahalo to Bobbi and to everyone who contributed to this post and to all of my friends who help keep me standing during difficult times and who bring joy and laughter into my life.  You know who you are.

Autism Myths, Legends, and Mysteries of Sleep 15

This post is for Danette’s wonderful Best of Best Series.  Click on the badge below on July fifteenth to see other posts on this subject.  FYI: My daughter approved this post.

BestofBestThe myth is that if your child cannot fall asleep it is due to either anxious parenting or lack of firm parenting.  The legend is that those on the autism spectrum can totally avoid sleep problems if they avoid sensory overload and they are in a calm environment.  The mystery is why those on the autism spectrum have trouble falling asleep and staying asleep.

Too many parents of children on the spectrum experience judgement for their child’s sleep problems and are given poor advice as a result.  I am one of them.  I can tell you now that if you talk to my fifteen year old that she will collaborate that the environment was quiet prior to her bedtime, and I was calm as we read her bedtime stories, told her stuffed animals good night and said her prayers during her toddler years.  Her bedtime was the same every night too.  Still she rarely slept more than six hours and she frequently had trouble going to sleep and went through periods of waking up several times a night.  She completely gave up her daytime naps unless she was ill by the time she was three.

Parents are also told that if they remove bright colors and all electronics from the bedroom and keep the house quiet their child will be able to sleep just fine.  Some recommend adding deep massage and/ or aroma therapy.  My teenager will tell you this does not work for her.  There are many times that she has no idea what keeps her awake.  Her mind just has trouble shutting down when it is bedtime.  She does eventually fall asleep.  She does get enough sleep to function either by taking naps or by sleeping longer some days.

No one knows for sure what causes those on the autism spectrum to have problems with sleep yet it remains an issue into adulthood for many.  Baylor College of Medicine believes it possibly is due to alterations in the production of melatonin.  You can read about their study by clicking on this link: Treatment of Sleep Problems in Children With Autism Spectrum Disorder With Melatonin – Full Text View – ClinicalTrials.gov.

I believe we need to quit believing there is a one size fits all range of needed sleep or even for the time of day people sleep.  Maybe some children and some adults do not need as much sleep as others.  Maybe some people are born night owls and need to sleep later in the day.  Mayo clinic seems to think this is true for teenagers anyway.  Click on this link to read more: Teen sleep: Why is your teen so tired? – MayoClinic.com.

Let me know what you think!