Tuesday, August 3, 2010

A Q&A with the authors of "Shut Up About Your Perfect Kid"—plus a giveaway



I recently had the chance to ask a few q's and get a few a's from the two sisters who wrote Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children (originally published in 2007, an updated version is coming out today). Gina Gallagher is mom to Katie, a 15-year-old with Asperger syndrome; Patricia Konjoian is mom to Jennifer, a 17-year-old with bipolar disorder. It's not often you call a book about raising kids with special needs funny, but it so is. It's also very informational, helpful to moms of kids of all ages but particularly those with older kids. Here's what the ladies—who also have a blog—have to say:

What I most adored about your book, besides the info and inspiration, was your sense of humor. I laughed out loud a bunch of times, like when you compared bragging parents' bumper stickers to ones you'd like to see—particularly:

Theirs: My honor student loves me

Ours: My bipolar kids loves me and hates me.

Here's my question: It's not always easy to keep your sense of humor about this stuff. What helps you?


For many parents, the process of accepting their child’s disability is a mourning process. We have to mourn the loss of the “perfect” child and let go of our expectations. We had to get through that process to be able to laugh. Now that we’ve been through this and time has passed, we are able to see the humor in raising an imperfect child in a perfection-crazed world.

I liked the resourceful mom in your book who had a business card made that her child with autism hands out that says, "Ask me about my autism. (I'm nonverbal, so I may not answer.)" What other tactics have you found to be effective for helping people engage with kids who have special needs?

One of the most valuable things we’ve learned is not to ignore children or people with disabilities. We were brought up not to stare at others with differences. We never realized that by doing so, we were making them feel ashamed. Now we try to engage kids with differences. It could be a smile or a brief conversation.

In your "Tips for Success At Home," you mention that developing a structured, predictable daily schedule is important for making kids with disabilities feel comfortable at home, and not to plan any change in the schedule without allowing at least one full week for preparation. OK, here's the thing: I don't love routines. What can parents like me do to walk that line between what's realistic for their lives, and what's best for their kids?

We’ll be honest, structure isn’t easy for either one of us. We fly by the seat of our pants. Of course, being self-employed with freelance businesses hasn’t helped make that any easier. We never know when work will come. What we have learned to do for our anxious children is try to give them advance warning about events and also to recognize that transitions are very hard for them. For example, before Gina’s younger daughter, Emily, started camp, Gina took her to the camp location so that she would know what to expect. Of course, there are certain events (such as taking Emily to the dentist) when it’s best to spring it on them at the last minute. It will cut down on their screams.

The book mentions that the grieving process for families of disabled children can last just as long as the grieving process for families with children who have died. Can you each share a little about what most helped you move past the grief?

Gina: I think there were several things that helped. First of all, I hit rock bottom the day my daughter’s teacher sent home a dark essay my daughter had written. I didn’t realize the depths of my daughter’s struggles until that point. I tried talking with friends and family members, but I think they were too closely involved to be able to help me. They were in pain too. I was fortunate to have a wonderful, older neighbor (a former counselor, teacher, and nurse) who was able to help me. She was what she called “a safe person.” She didn’t judge me or have any hidden agenda. Her goal was to get me talking and to help me arrive at my own decisions on what I needed to do. I was so overwhelmed with grief that I couldn’t see straight. My friend helped me break things down into manageable parts. Once I did that, I was able to take back control and help my daughter. Once I started taking action, my tears subsided. That helped me deal with the grief, but what got me to see my child differently was speaking with positive parents of kids with disabilities. They shared success stories and helped me see the gifts my daughter has. They told me what books to read and what speakers to hear. Suddenly, I was looking at my daughter in a completely different way.

Patty: My experience was very different than Gina’s. When Jennifer first began exhibiting severe mood swings, I feared that maybe she had experienced some trauma that I wasn’t aware of. Once we ruled that out as well as exhausted every diagnostic test, I knew it was a mental health issue. Know that depression runs on my side of the family, I was very concerned. It wasn’t until three years after Jenn of bouts of severe irritability and sadness that we received an official diagnosis. As Jenn was being discharged from her second hospitalization, the psychiatrist told my husband and me that Jennifer was indeed bipolar. Even though we knew for three years that this was most likely to be the diagnosis, it was, nevertheless, very difficult to hear and I felt very sad. But as we left the office, I continued business as usual: trying to keep Jenn calm and to keep all three kids safe. I knew that if I became unglued, so would the rest of my family. It was critical for me to conduct our lives as if we were just like everybody else. So with two hospitalizations, various medications, therapist and psychiatrist appointments, I went about my business and never cried.

A couple of months later just as Jenn was about to begin middle school, my husband and I met with the school adjustment counselor. It was during our meeting when she said, “Your daughter has a severe disability.” Severe disability? Throughout everything we had been through with Jennifer, I never once thought of her as disabled. Nonetheless, I found myself feeling terribly sad once again. The real gravity of the situation hit a few months after Jenn was released from the hospital. I was sitting alone in my living room watching home movies while everyone else was sleeping. As I watched the images of my little girl running and smiling and acting like any other kid, I began sobbing. “Was she bipolar then? How could I not know? I am her mother.”

As sad as I was, I knew that I needed that moment of realization. And still I knew that we would go about trying to live our lives as normally as possible. I believe that God gives everyone a unique gift. Fortunately my gift from God was a wacky sense of humor. I knew that my sense of humor would continue to sustain me for whatever life had to throw my way. It was during a meeting with my therapist when I announced I was going to write a humor book about bipolar disorder. Her response was, “I know you will.” And the rest is history.

As you well know, dealing with other parents' responses can be tough. I liked your response to moms who say "I just don't know how you do it"—"You mean I could choose not to do it?" What do you do when moms act all sorry about your kid, like he's a tragedy or something?

Gina: I actually don’t get offended any more. I almost feel sorry for them that they aren’t able to go beyond a child’s differences to see what gifts they offer. Our children are such honest and compassionate kids. Their hearts are pure.

Patty: I am not offended either. Rather than focus on our kids weaknesses, I prefer to talk about their strengths, that way you educate as well as help to reduce stigma.

What is your #1 tip for staying sane (more or less)?!

Gina: White wine (just kidding...it’s red). Take one day at a time. As parents of special needs children, life is full of unpredictable ups and downs. Just strap on your seat belt and get ready for the ride. But just remember that you’re not on that ride alone. There are others that are screaming and smiling right beside you.

Patty: There is an instant connection between parents of kids with disabilities. When we meet people whom we connect with, we usually tell them, “You had us at hello.” And for those folks we really bond with, we will teach them the secret handshake.

The authors have kindly offered to give away two copies of their book. Leave a comment below—about what Gina and Patty had to say, about why you'd like the book, whatever you please—and I'll randomly pick two winners by Tuesday Aug 10 at 11:59 p.m., announce it in this post and alert you both by e-mail.

UPDATE: Congrats to Patty and Kristen, who will each get a copy of the book.

51 comments:

  1. Is the new version different than the original version? I have the first one, and I absolutely LOVE it. Like you, I laughed out loud many times. I love that response to how do you do it. :) If the book is different than the first one, I'd love a chance to get a copy!

    BTW, I just got my box from Fun and Function and am SO thrilled. I will be blogging about it soon. :)

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  2. I need this book. Especially as the diagnoses' just seem to keep piling up. So give me a go and throw my name in the hat!

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  3. So I just found you and Max, who I already love to itty bitty pieces. And I recently learned about these supa-fab ladies and their book. Also? I had to get my ear drained today (after a very stuffy flight), but I couldn't go until I had my flat tire repaired, which was difficult because the hubs is on the opposite coast this week. Anyway, when he's out of town, I pretend that I've been cleaning the beegees out of our house. Really? I have my secret housekeeper come out, and I spend the day playing and working with my own little SuperBen, while my nights are spent reading, reading, reading. I'm ready for a new book, and I love me some funny!

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  4. I love what Patty says about sometimes finding instant connections with other special needs parents. I find this such a true statement. I really would love this book ,especially having two children that are both special needs, yet completely different needs. With their changing needs I find sometimes I am not sure where to go.

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  5. The grieving process is long indeed, and when you think you've got a handle on it, something will come out of the blue and knock you back down.

    Today, we were denied seating at a restaurant that doesn't allow strollers (Bertrand's wheelchair is on order). It so easy to pretend he is still just a baby rather than an almost 3 year-old toddler who beat his two year life expectancy but whose condition is still believed to be fatal and who may never sit unaided, crawl or walk. Then SH*T like this happens.

    I could use some of Gina and Patricia's sense of humor. :)

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  6. I would so love this book! I have a son with Asperger's and even just the title sounds exactly like something I'd say. If I don't win the free one from you, I'm totally buying my own copy! (But please can I have the free one? Neurologists, meds, OT, social skills group, etc... that stuff doesn't come cheap!)

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  7. Reading about that book came at just the right time. I am really struggling with the grieving process right now,and dealing with families misconceptions about my children. I have three children, one with Bipolar disorder(among many other dx),and another with an autism spectrum disorder....I feel very alone in this right now. And I do SO often want to yell that at people "Shut up...I get it, your kid is perfect...fine...YOU win all the parenting awards!!" LOL...

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  8. I love how they have the guts to be honest and say that sometimes it's hard and sometimes I don't know what to do.
    People who don't have children with disabilities often assume that those who do, are the most amazing parents who must know everything. They don't realise how much time these parents spend in the dark wondering, What now?
    I LOVE their sense of humor!
    I know an "ordinary mom", my best friend who would benefit from this book, so throw my name into the hat too please :)

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  9. This sounds like such an interesting book! (As far as I know) my baby girl is "normal" but I work daily with the special needs children and their parents. I'd love to read the book for myself but also add it to my library that I can loan to the parents I deal with. I work in a very low socio-economic area and most of my parents are struggling to buy nessicary items like food and clothing, they usually don't take the added stress of raising a special needs child well so an informative book that isn't written like a textbook sounds like the perfect way to offer them some help!

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  10. Love the article and the reminder that all children have special gifts regardless of a disability. I like her response to moms who say they don't know how she does it.

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  11. Love the title. Can't wait to read this book!

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  12. Wow! Would love to read it! If necessary, I'll pay for shipping :)

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  13. I never read posts this long... I'm way too lazy. But. I read this whole thing... and now I wanna read the book!! And I wanna write my own... with swears and everything!

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  14. Marissa's getting a little big for her stroller, and her wheelchair is awkward to transport with our new son in the car as well, so for now, stroller it is. We're starting to get "the look".

    So far, nobody's gotten punched in the mouth. It's early yet, though. My sense of humor seems stalled in 2008, when Marissa first got diagnosed, so the book would be excellent for us.

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  15. I have a nonverbal 3 year old with developmental delays a brain lesion, epilepsy, mild CP, and a whole slew of other medical problems (who just learned that farts are funny). I also have a 10 month old, and my husband is going overseas for a year. I could definitely use some humor to keep me sane- I need this book! :)

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  16. Love it! I requested it from my library, but I'd love to have one of my own - to lend out to other parents who could use a little humor too!

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  17. From Gina and Patty

    Thank you all for your kind words. This book is a re-write of the first, but very different. It tells more of a story, taking readers through the difficult journeys with our daughters (i.e., Jennifer's hospitalization) to show readers how we got to the point when we were ready to laugh and to see the many ways our children have made our lives better.

    It also offers prescriptive advice from experts so that special parents can feel empowered to help themselves and their children.

    The Foreword was written by Dr. Ross Greene.

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  18. This is great! I'd love a chance to win this book. And it would be great if it were called "Everyone's sister-in-law should shut up about her perfect kids". Just kidding; I love my SIL, but her kids ARE perfect.

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  19. This sounds like the kind of conversations me and my friends have! I would love to have this book, but if sending to the UK rules me out, pass it on to someone else!

    The transition thing is a big deal at the moment so I'd love to read more of what they suggest.

    It seems like there is so much more provision in America - here therapy is hard to come by and it feels like if you're a family who are coping OK (and whose child seems to be doing OK!) you just get passed by.

    I guess that's one of the few negatives of the NHS! xxx

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  20. I would love to have the book! I have a son with Autism, SPD, APD, Apraxia...the list goes on and on. I would love to read something that brings funny to the table. SO many special needs mom books are just so depressing and dry.

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  21. I'd love to read this book and be able to recommend to other parents I know. I have a child with PANDAS who exhibits, OCD, ODD, sensory, rages, and so much more when sick. It's a disorder not many know about so we are constantly defending our kids and our parenting skills. It would be great to finally recommend a book that we can relate to, enjoy some of the "inside jokes" and actually smile!

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  22. I identified wholly with that seeking other POSITIVE parents of special needs kids. My husband and I have found that some "support groups" seem more like pity parties.

    (and I loved the business card idea!)

    Stacy

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  23. Will you ship to Ireland? If so, I'd love this, and I promise to share it with the rest of 700-strong Irish Facebook group for families living with autism. It sounds like a great read :)

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  24. Great interviews! Two points that resonated with me are the laughter and the wine. :) We have two special needs children, the second just born and has a medical-error-caused brain injury, and humor is key, even under the worst circumstances. We've found that through and through with our first child who was born with cerebral palsy. There are times, however, when you just need to unwind. We enjoy sharing our stories and challenges with other parents over, of course, a glass of red now an then. Keep up the great work!

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  25. It was nice to hear that I'm not the only parent who hit rock bottom and didn't know what to do. I have depression and an anxiety disorder so when I realized that there was something not quite "right" about my son it really hit home. Even after accepting that there was something going on, I began hating on myself for not getting over my depression and helping him more. Now that we have all the right people to help us we have been able to see past the label and let go of all the expectations we had and find out who our little boy really is. I'd love to win a copy of this book.

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  26. This post made me laugh ("Ask me about my autism - I may not answer") and cry (recognizing that my child has a disability), so I can only imagine what the book will do.

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  27. I just found this. You can read an excerpt here.

    http://www.scribd.com/doc/34237863/Shut-Up-About-Your-Perfect-Kid-by-Gina-Gallagher-and-Patricia-Konjoian-Excerpt

    Their website is www.shutupabout.com

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  28. Awesome! I'm ordering the book (and if I win it, I'm giving it to one of my many friends who have special needs kids.)

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  29. Marissa's dad - you can get larger strollers made specifically for disabilities. They are lighter and easier than a wheelchair, but unfortunately quite expensive. But if you could get your doc or PT to write an Rx you might be able to get insurance coverage. Here's some examples:
    http://www.especialneeds.com/alvema-ito-stroller.html
    http://www.spinlife.com/Convaid-EZ-Rider-Stroller/spec.cfm?productID=82175

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  30. I would love this book. Who out here couldn't absolutely use a dose of FUNNY? I'm sure we could all learn a thing or two from these two veterans.

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  31. I'd love to read this book! There are days my sense of humor is gone by breakfast.

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  32. I so want to read this! And then I want my friend to read it and my sister and....

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  33. I can not wait to get this book! I love what I have read so far. I have two special needs children, one 9 y/o with Cerebral Palsy and one teen with Bi-polar & Borderline Personality disorder. Humor is better than therapy in my opinion. Plus, getting insight from other special needs mom's is the best!

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  34. These sound like my kind of gals! We have a son with ADHD and a very close friend with Aspergers. I'm looking for additional coping strategies as they get older (13 and 7 now). This sounds like an excellent resource. Love, love, love your blog! So informative!

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  35. I must get this book! I so related to these special ladies! I am parent (carer) to a 20 year old with bipolar, and a 7 year old who is wheelchair bound, and in palliative care. I have discovered (after many tears and frustrations) that I function best when I don't try TOO hard - when I give myself permission to be GOOD ENOUGH - when I give myself TIME for myself (occasionally) - when I accept that I am not in control - I just manage what happens on any given day! and when I try to live each day, and be happy! That way I can help my kids to be happy, too.

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  36. Oh laughter can SO be the best medicine during rough times. I'd love a copy of this book to read and to pass around to some friends that have dealt with years of friends and family that just don't 'get it'. How refreshing!
    What a great summer read!
    Ellen

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  37. I have already ordered this book but would love another to share with friends and family! You two rock!
    ~Lisa

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  38. I can't wait to read this book!! I know our library won't have the second edition for awhile so I may just have to pick up the old one.

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  39. I love your wacky sense of humors!! Sometimes a good laugh is as theraputic as a good cry.

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  40. This sounds like a great book! I really enjoyed reading this post.

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  41. What a great book! As a special ed teacher I try to always remember how my students family feels. Books like this are extremely helpful and give me insight into what it's like parenting a child with special needs.

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  42. I have a friend who I think would relate to this book-and could use the humor, too.

    Oh-and I would like to read it, too.

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  43. you got me at the bumper sticker!! I can"t wait to read this book!!!

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  44. I would LOVE this. My husband and I lead a special needs ministry at our church, and I know many parents would benefit from reading this and that it would help us have a better understanding of the families we work with. We're also considering adopting a child or children with special needs, so it may be handy for our parenting need too!

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  45. I love reading your blog, mostly because it makes me laugh & think. This post really had me cracking me - which is good as I'm getting on the roller coaster again next week. I have a nearly three year old boy who is a quad congenital amputee (missing hands & feet) & am expecting a baby girl next week who doctors have not been able to diagnose but will be medically fragile and have some sort of disability.
    Needless to say, your interview with these authors gave me some much needed laughs! Thanks for sharing!

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  46. Well if I don't win I'm definitely going to get it for myself. Our daughter is getting her first SMO tomorrow so I'm preparing myself for the questions. She had a stroke when she was born and is such a motivated little girl so far we haven't had a lot of questions but I know they are going to start coming.
    BTW Love your blog. You've really helped us.

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  47. Love this interview with the authors and I just read the Amazon reviews too which were great. The funny title alone tells you that these women "get it." I love the idea that when you meet another mom raising a child (or children) with special needs, they just "have you at hello." So true (as I learned from you and many others last weekend!)

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  48. Ahh, I love finding those who "get it". Sounds like a fabulous book, that we could all use for a little relief. Can't wait to read it!

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  49. Sounds like just what I need right now (a good laugh that is) I liked how they said the we need to take one day at a time because you never know what is going to happen!! So so true. Also, that you feel an instant connection with someone that has a child who has a special need. I have three. Type 1 Diabetes, Autism and Epilepsy. All very special and challenging in different ways. The one with Epilepsy was just diagnosed 3 weeks ago hence the reason I would not mind a good laugh. :)

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  50. Thank you so much for sharing this info about this book. I've been meaning to purchase it, but times are tough. I'd love to have some laughter in my "me time" when it consists of book reading. Great post!

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  51. I will read this book with great joy! Thank you for the interview.

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Thanks for sharing!