Awaiting Answers to Prayers 12

Dear God,
Sometimes I think you have too much faith in me especially since you should know me better than anyone. You must realize that I am not as strong as I sometimes seem. I prayed, asking that you send angels to help and I am not sure if I missed an important answer, if you delegated to an angel who is not up to the task, if the request or even the reply got struck in a queue somewhere, or if my message somehow was spammed.

All I know for sure is my family and I still need your love and support to get through life’s challenges and I did not get a reply that I can understand. I am sure you know about my request; after all you know everything. I hope my handful of readers will understand that the details are on a need to know basis that I cannot and will not share here.

Mahalo for taking the time to listen when I know there are many others who need your help and in the scheme of things, many need you more than we do. I hope you understand that I do not ask you to abandon someone else for us.  Still I hope you can spare someone who will give me clear guidance as to how to proceed.

Love,

Sue

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.

Does Special Needs Equal Medication Needs? 5

This post is part of Danette’s wonderful Best of the Best Series at S-O-S Research Blog where the topic this month is medication use related to those diagnosed with invisible special needs. I mentioned our bad experience with medications in my Therapy? What Therapy? in August, so you might assume I am totally against medication for this group. I am not.

Yet, I am against medications being the first choice especially for young children. First, you need a full workup to rule out alternative causes and to help assist in obtaining an accurate diagnosis. Yet, we have some psychiatrists who skip this step or who, if they do not completely skip it, still fail to order a complete evaluation prior to prescribing medication.

Unlike one of my fellow bloggers in this series, I do not believe the reason is for financial gain. Wonder why? I spent years working for various insurance companies, and even volunteering on legislative committees for case management organizations. I am also married to a physician. Doctors receive money as speakers, but they also go to extra training on medications and take time away from their practices to do this and most do not take prescribing new medications lightly either.

Remember it is their license on the line if a medication causes life threatening side effects. Doctors also pass on samples of medications to their patients who cannot afford them. I really want to write a post about when and why we stopped trusting any doctors, but that is a post for another day.

None of the medications prescribed for my child were samples, nor were they medications newly on the market, yet they still were unhelpful and inappropriate for her since they did not address the root of her problems, and in fact made things worse. Lack of understanding of her sensory sensitivities resulted in the wrong treatment.

I was given a check list to compare at one point to determine which diagnosis my daughter had, ADHD or Bipolar Disorder. I told both doctors that neither one really fit her, but they suggested I guess as to which one fit best. There is a reason I speak out about wrong diagnoses and especially wrong diagnoses in girls. No one even mentioned Asperger’s or autism at that point nor did they mention sensory sensitivities despite the fact that my daughter had text-book characteristics from the time she was a toddler, if the doctor listened and asked the right questions.

Once we had the correct diagnosis from a third doctor, who is a neuropsychologist and who did the complete evaluation, the psychiatrist asked me why I would want my child to have a diagnosis that no medication could treat. My reply, “Why would I want to treat her for something she does not have?”

Yes, medication can help some children as long as you have proper monitoring for side effects and as long as you have ruled out other medically researched options. Please note that many on the autism spectrum also have comorbidities that can be treated with medication. There are ongoing studies related to autism and sleep problems, so hopefully correct treatment options for this will be available too. I wrote about this in July on my Autism Myths, Legends, and Mysteries of Sleep post.

There are times when medication is appropriate, for instance when, there is a risk of harm to self or others. Even then it is important to monitor for side effects and to reevaluate once the patient is stable. Some medications can be safely weaned with medical supervision.

Your Child Has Autism, and I Don’t Know What to Say: Seven Ways to Go the Extra Mile to Keep Your Friendship Thriving 43

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 me@bobbisheahan.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.