Category Archives: Lists

7 Things I Swore I’d NEVER Do…

There’s a great quote I can’t find that goes something like this:  “Before I had children I had a few strong opinions.  Now I have a few children and no opinions.”  Wise words indeed.  But even more true for those of us raising special needs children.  For we never imagined the complexities and situations we find ourselves in.  My dad has always told me not to tempt God to prove you wrong.  These days, I find these to be even wiser words.  😉

Here are the seven things I swore I’d never do – before having a special needs child: 

1.  Have an un-toilet-trained child over the age of two.  Now, stop laughing at me.  It’s most unbecoming you know.  Seriously, my late and beloved grandmother was a firm believer that all children should be potty-trained by the age of one.  No, really.  And both of her children were.  She didn’t work outside the home at the time, and she spaced her non-special needs children seven years apart.  So, yes, she had the opportunity to use training techniques that many today would call “intuitive” or “listening to the child’s cues”, etc.  It worked for her.  So, I was of the opinion that we would early train as well.  Yeah, life is funny like that. 

2.  Allow my child to sleep in my bed.  I have all kinds of strong, yet useless opinions about sleep schedules and the importance of parents having a sacred space. I’m serious about that laughing.  You really must stop.   Our NT daughter was a good sleeper.  And, despite (or because?) of being a precocious little imp, she actually took two naps a day for us up until almost three.  And I am one of those obnoxious individuals who rarely needs a nap, falls asleep easily, wakes using a mental alarm clock, and doesn’t drink coffee.  So, my son’s sleep issues have probably been the hardest thing for me to adjust to.  Because I am so quickly alert, it is virtually impossible for me to go back to sleep once awakened.  And Callum was still waking approximately 4 times a night well past two years of age.  In light of my strong views, it’s kind of ironic that some of my favorite memories of him are the ones of us awake together in my bed, snuggling and quietly watching Yo Gabba Gabba in the wee hours of the night until he fell asleep again.  I have no idea what his future will bring, but I cherish every moment of that now while I can. 

3.  Allow a child over the age of one to drink out of a bottle.  Yes, my son can drink out of a cup with a straw and uses a sippy cup.  But he still wants to snuggle with me on my lap – and drink out of a bottle.  We confine this to home now.  But he is such a little sensory seeker that he craves this – touching my face, running his little hands and feet over my arms and legs, and pulling my hands to him to squeeze him.  And I’m a wimp to his happiness.  So, there you go. 

4.  Bring an electronic entertainment device into a restaurant.  Oh, I well remember my haughty disapproval of this.  I could not believe that some parents would allow their children to tune out others at a dining table and not learn good manners.  Now I carry my iPhone or an iPad everywhere I go.  It helps him tune out the background and focus– and us to catch a quick meal.   I know I should be teaching him social skills, but he isn’t there yet.  And I’m not willing to let him scream his head off in a restaurant.  There are people there without special-needs children- with their own stresses- who need a quiet meal too. 

5.  Allow my young children to watch TV.  I still don’t really approve of this in theory.  But I’m tired.  And no one has sent in backup.  Nuff said. 

6.  Share my son’s diagnosis.  I used to think that it would do him a disservice.  Now I think the disservice is not preparing his path in the world by helping the world to understand him.  So I tell anyone I think needs to know at any time. 

7.  Discuss my most private hurts, missteps, and worries in public.  I know that seems strange to hear for those of you who don’t know me personally.  But, in my day-to-day life, I am actually a fairly restrained person.  I don’t curse in public.  I’m pretty modest in my dress.  I’m so ridiculously afraid of embarrassing myself in front of others that I don’t even dance.  My friends have long amused themselves and shared stories of various pranks on their part to embarrass me by calling out my name on an intercom or poking fun at my need to be ladylike.  And you should have seen my horrified reaction when my husband decided to apologize for an argument on Facebook.   I’m not  a prude (though an enormous fan of Miss Manners), but I am of the opinion that there are just some things one does not do in public if one has any class at all.  Blame the southern belle in me.  But I’m also of the opinion that if you are going to do something, you should do it with gusto.  I think this blog qualifies, don’t you?  😉

8 Reasons Why My Dad Is Autism Grandparent of the Year

The nice thing about having your own blog is that you get to declare things with no oversight committee.  So, today I am declaring my father – 2012 Flappiness Is Autism Grandparent of the Year.  

Being the grandparent of a child with autism can’t be easy.  On one hand, you are worried about your grandchild.  On the other, you are worried about your own child – the mom or dad.  You want to help, but you don’t want to interfere.  Or maybe you do — in which case you will end up on an altogether different kind of post.   😉  

My dad is awesome.  And, since he never toots his own horn, I’m going to do that for him.  So, Dear Reader, please allow me to share with you the eight reasons why he wins:

1.  He has never – not even once – unburdened himself on us about his own fears or grief.  He is wise enough to understand that we have all we can handle of our own.  I am sure he worries, because I know he loves his grandson.  But he has rightly concluded those feelings are best shared with others.

2.  He does not presume to tell us what we should be doing with regard to raising, educating, or providing treatment/therapy for our son.  He listens to me discuss it — at length – but just nods and says something to the effect of “Alright.  That makes sense.  So where do we start?”  If I ask his opinion, he’ll share it.  But, otherwise, he merely supports what decision we have made.  I haven’t asked him why he is so good about this, but I suspect it is because he trusts me to have researched a topic to death before arriving at a decision and that he thinks I have good judgment.  I really appreciate that.  And, because of that, I seek his counsel more often.

3.  He doesn’t get upset when we inadvertently forget something.  He knows our days are busy and our stresses many.  He knows that therapy and specialists cost a lot of money.  And he doesn’t get the least bit upset when we find it necessary to do a “just buy gifts for the kids” kind of Christmas.  He’ll tell you that us forgetting things just buys him another “get out of jail free card” for when he forgets something.  But, humor aside, he doesn’t sweat the small stuff or attempt to test our affections.

4.  He stays in the here and now.  Because he knows it is too early for predictions, he doesn’t ask for them.  He doesn’t pester us with “Well, does the therapist think he will talk one day?” or “When is he going to ______?”  These types of questions not only cannot be answered at this time, they also cause us a great deal of anxiety.  I’m sure he wonders as well, but he doesn’t burden us with it.

5.  He doesn’t bat an eye at the disaster area that is our home.  Not even once.  My dad has seen the crumb devastation our little human wood chipper wreaks when eating, his penchant for writing on walls, and his love for testing the properties of gravity with all living room objects.  So my dad just clears a spot and settles in for the visit.

6.  He doesn’t place guilt on us for the things we choose to decline – like parades, chaotic birthday parties, or piano recitals.  He understands that there are some things we just don’t want to do with Callum and that there are some things Callum just doesn’t want to do period.

7.  He has never attempted to deny there was a problem.  Even from the beginning – when others were saying, “He’ll be fine” and “He’s just a boy”,  he never silenced my fears by suggesting that nothing was amiss.  As nice as it is to be reassured everything is okay, it doesn’t silence your intuition.  My dad is great about acknowledging a problem without carrying on as if the sky is falling. People like that keep you grounded.

8.  He truly enjoys his grandson.  When he visits, he delights in the child Callum is right now – rather than adopting The Look of Tragedy every time he sees him.  It’s important for a child to not only be loved, but to be liked just as he is.   And, because he accepts my son for the wonderful little person he already is – rather than waiting to see who he will become – he is able to enjoy his uniqueness as well.  When Callum does something remarkable – something that can be attributed to autistic traits – he gets a kick out of it.  And although, like me, he worries about him, he also finds him fascinating.  That’s unconditional love, with the stress on — unconditional.  :)

P.S.  And one more fabulous thing about my dad.  He subscribes to my blog and reads me every day!

So, who do you nominate for Autism Grandparent of the Year and why?

These Are a Few of My Favorite (Autism-Related) Things…

From time to time, I’ve had a few readers email asking me where to obtain/locate certain items/sites mentioned in my blog posts.  So, it occurred to me to do a “Favorite Things” post with links.  Tragically, I am not Oprah and cannot afford to surprise you all by having these items magically appear under the seat in which you are now sitting.  I am not an Amazon Associate or affiliated with any of these products, nor will I be receiving any sort of compensation or blog promotion for them (other than my shameless linking to my own posts).  :)

Love Life, Be Brave

Favorite Autism Jewelry: This is the first thing I was given following the realization that my son was on the spectrum.  My friend Christy presented this to me after taking me to lunch and giving me the low down on Things to Come as a special needs parent.  I wear it every day.  If you look up the phrase “Love Life, Be Brave” online, you can find it on all sorts of stuff besides rings.

Silver Autism Pendant

This is a little necklace I wear every day now.  My dad gave it to me for Christmas.  It is fairly small, but already connected me to a couple of people who recognized the significance of it.  Autism puzzle jewelry is a conversation starter — especially working with curious middle schoolers.  They are quite fascinated hearing about teacher’s real lives, and it provides an opportunity to provide a little autism awareness when asked about it.

The Curious Incident of the Dog in the Nighttime

Favorite Autism Fiction: The Curious Incident of the Boy in the Nighttime by Mark Haddon.  I read it years ago.  It rang true to me.  And I still recall the young man’s horror, sense of duty, courage, and fear.  Highly recommended.

What I Wish I'd Known About Raising a Child with Autism

Favorite Book to Recommend to Parents of Newly Diagnosed Kids:  What I Wish I’d Known About Raising a Child with Autism by Bobbi Sheahan.  It’s very informative, yet it feels like the author is holding your hand in a moment of crisis.  Bobbi Sheahan is force to be reckoned with in autism awareness — especially in the area of helping parents.

Scentsy Autism Speaks Candle Warmer

Favorite Gift: This is a gift given to me by a reader, Laurie Coleman, a few weeks ago.  It is a Scentsy candle for Autism Speaks.  She had an extra one left in her stock and sweetly sent it to me — without once even asking for a review, good word, or inclusion into any post like this.  My husband has become addicted to it.  The scents last a long time.  And I happen to think it is a really pretty way to make your house smell nice.  I’m not sure whether or not this Autism Speaks candle warmer is still available.  But they are really nice, and you might want to check with her anyway or look at a few others.

Thinking in Pictures

Favorite Book by an Actual Person with Autism:  Thinking in Pictures by Temple Grandin.  She has been a  hero of mine for many years.  I think it is awfully ironic how drawn I was to her story – many years before I even had my ASD son. This is compelling and wise reading.  If you haven’t read this, do yourself a favor and get a copy.  It is an autism classic and a behind the scenes peek into a fascinating autistic perspective.  I know there are other awesome autistic individuals besides Temple Grandin, but a hero is always a hero.

What Autism Means to Me

Favorite Autism Youtube Video:  It is a young autistic man named Alexander who explains what autism means to him.  I love this.  It’s insightful, and it made me smile.

Camp I Am Special

Favorite Program for Special Needs in My Local Area:   It is Camp I Am Special, located in Jacksonville, FL.  I know two autistic kids who have attended it for years.  Their parents recommend it highly — and it is the only autism-free break they get each year.  There are many such camps and summer activities geared toward autistic and special needs kids throughout the United States and probably other countries.  Share your local one and its link below, and I will do a compiled listing of them here on my site.  Unless, of course, one of you already has a link to such a list…

Indoor Trampoline (A.K.A. The Best Money I Ever Spent)

Favorite Toy I Bought My Autistic Child:   a little indoor trampoline.  The one I bought is currently unavailable, but this one looks almost identical.  It’s sturdy, and he knows how to play with it.  I compared a lot of these before picking this one.  It had the best reviews.  It’s been wonderful for our house.  And, if you could see the daily squeals of delight each day, you would understand why.

Favorite Autism Parenting Blogs: There are entirely too many wonderful autism-related blogs out there.  And entirely too many bloggers whom I really like and admire.  But these are a few that I return to most frequently.  Their voices are unique, heartfelt, and sometimes controversial.  But I learn from them.  I know that there are many autism parent blogs I’m leaving out here.  Forgive me, but I simply don’t have enough room.

Adventures in Extreme Parenthood

Adventures in Extreme Parenthood – by Sunday Stillwell, mother to two boys on the more severe end of the spectrum.  She is who inspired me to “put myself out there”.  She tackles her challenges head-on with humor and style.

Autism Daddy

Autism Daddy – by an anonymous dad of an 8-year-old boy with severe autism.  I love his willingness to tackle controversial issues without alienating people who disagree.

Lost and Tired

Lost and Tired – by Rob Gorski.  This blog is a labor of love by a dad with three boys on the autism spectrum.  He is a passionate advocate for his kids and clearly adores his family.  Some of his posts will rip your heart out.  I love that he also shares great apps for Android – a device often ignored by autism app reviews.

The Third Glance

Favorite New Blog by an Actual Person with Autism –  The Third Glance – by “E” – an autistic PH.D student.  It’s a new blog, so there isn’t a lot of content yet, but I like E’s writing and perspective.  I’m looking forward to reading more.

Favorite Autism Quote:  “I know of nobody who is purely autistic, or purely neurotypical. Even God has some autistic moments, which is why the planets spin.”
— Jerry Newport  (Your Life is Not a Label: A Guide to Living Fully with Autism and Asperger’s Syndrome)

"Welcome to Holland"

Favorite Autism Inspiration:  If you have been in the autism community for long, you already know it.  But it’s a classic for a reason.  It’s that good.  It’s “Welcome to Holland” by Emily Perl Kingsley.  If you haven’t read it, do.  If you have, read it again.  :)

Favorite Autism T-Shirt:  I don’t have one of these, but I really want one.  I love the touch of whimsy.  Someone who counts themselves among my family and friends should buy me one of these.  You know who you are.  Size 2x please.  😉

Nickel Bed Tent

The Coolest Thing Ever Invented for Special Needs Kids (With a Really Long Waiting List):  The Nickel Bed Tent.  This was invented by a mother of an autistic child who could not be contained safely in his bed at night.  Check it out.  We’re getting one.  They are a small company, however, and do have a waiting list.

Favorite Autism Websites:  I purposely did not include wonderful organizations such as First Signs, The Doug Flutie, Jr. Foundation for Autism, and Autism Speaks because I am planning to feature them in a Resources page I’m working on.  The following are a couple of sites that those starting out in the online autism community might not know about yet:

Autisable - An Online Magazine of Selected Autism Blog Postings

Autisable – I like Autisable because of the variety of posts featured from bloggers I’ve never even heard of.  And, because posts are submitted and put through a selection process, readers get to read posts that focus on the issue at hand – autism.  Most autism blogs I’ve come across end up being journals of the everyday lives of their bloggers with varying concentrations of autism related postings thrown in.  Which is fine, of course.  A blog is whatever its blogger wants it to be.  But there are really only so many people you can follow and have any kind of life whatsoever.  (Except for mine, of course.  You should always follow mine.) Autisable allows me to read some interesting posts that focus on autism alone.

Future Horizons

Future Horizons – Yes, it’s a publisher rather than a traditional information site.  However, these folks have the kinds of books you can’t find at Barnes and Noble.  They specialize in autism publishing, DVDs, and conferences.  There’s a lot here on a lot of topics.

The Cutest Little Boy in the World

My Favorite Autistic Person’s Picture -When He Was a Baby-  There’s really no reason to share this other than my shameless pride at having given birth to this little guy.  And who would blame me?  Admit it.  You just went, “Awww!”

So, what are some of your Favorite (Autism-Related) Things?

5 Things I Would Do for My Son and Others Upon Winning the Powerball Lottery

Dear Universe, Random Chance, Fate, All Powerful Individuals My Somewhat Suspicious Grandfather Believed Controlled the State Lottery, Etc.,

No, I didn’t address God here.  I do believe in Him.  But I prefer to think He is concerning himself with matters unrelated to state lotteries or NFL football. 

I have heard the unfortunate stories circulating in the past few years about lottery winners who later go on to personal misfortune.  It has occurred to me that this is perhaps the reason you have reservations about letting me win the Powerball lottery.  I know that we don’t actually have the Powerball lottery here in Florida, nor do I actually play it.  But my dad assures me that this should not be a hindrance if I am destined to win.  If it is meant to happen, it will happen.  So, I thought I should outline exactly what I would do with the funds should you rethink the matter and place a winning ticket in my path. 

Here is what I would do with several hundred million dollars:

1. Build a new home — complete with a large sensory-friendly playroom filled with therapy equipment and furniture ideal for preschool learning.  Build a nice guest home a little distance from the house.  Hire a full-time ABA therapist.  Recruit someone awesome with competitive salary and free housing (the guest house).  Yeah, so this one is personal.  But, if I win the lottery, my baby gets taken care of first.  However, he needs socialization and a school.  So…

2.  Put together a team of education experts –some made up of professionals I have worked with in my local school system who are awesome, recruited persons knowledgable in autism and special needs learning, and experts in charter schools and private schools. 

3.  Build an autism charter school or private school here in my hometown.  Staff it with teachers who have experience working with autistic kids, speech/occupation/physical therapists, and ABA therapists and trainers. Design it on a sliding scale of affordability for parents to enroll their children and establish some sort of foundation to assist in keeping it running after the money runs out.  I was an English major.  Somebody else will have to be in charge of that part. 

4.  Found a special needs parent organization designed to establish a chapter in each city – including mine.  The goal being to have a PTA type group looking out for each others’ common needs across a common school system and training some members to be special needs advocates. 

5.  Begin a therapy scholarship for families like ours.  Whose insurance (just yesterday) deemed that their child may not attend locally based speech, occupational, and physical therapy but most drive out of town for 6 therapy sessions per week.  People who can’t quit their jobs to do so.  People who need ABA therapists to travel to remote areas to provide services in little towns that have never heard of ABA.  People who aren’t eligible for any kind of help whatsoever because they are living high on the hog on the equivalent of a teacher’s salary.  People who didn’t sleep a wink last night — eaten up with panic in the witching hours of worry for parents of special needs kids.  Yeah, people like that.

So, you see, I have good plans for these funds.  Certainly better than that guy who put it in the bank and bought an RV, right?  I’m ready, Universe.  Bring it on.  I got this.

Speak No Evil: 8 Things Family, Friends, and Complete Strangers Shouldn’t Say to Parents of Autistic Kids

Nosiness isn't any more attractive in you.

1.  “Are you planning to have any more children?”  Hmm.  Are you planning to have sex tonight?  Why people ask such personal questions of strangers or acquaintances is unknown to me.  But even if you are acquainted well enough with someone to discuss future children, think about it before asking the parents of an autistic child.  Lightning can strike in the same place twice.  This is a deeply personal issue for some of us.  Statistically, we are more likely than not to have any future children not affected by ASD.  But the risk is higher.  And the ASD affecting another child could be more severe.  Yet, we may want our children to have siblings.  We may want more children to love.  We may always feel the loss of a child we had expected to one day have but choose not to after considerable thought.  Parents of ASD kids do not need your opinion on this issue – unless we ask for it.  Besides, we happen to love our ASD kids and may not find them quite the tragedy some would have us believe.

Moving in with us? Then, no, free advice is unwelcome.

2.  “What are you going to do to about such and such behavior of his?”  Well, are you referring to stimming behaviors?  Because he can’t stop those behaviors any more than breathing.  It’s who he is.  Stimming fulfills a need.  If the stimming behavior is harmful or dangerous, then that obviously needs to be addressed and replaced with a safer one.  But some kind of stimming will happen no matter what, if the child needs it.  If you are asking about his refusal to speak, socialize, or observe social conventions, then your question is a loaded one.  One that is answerable only by the child’s ASD severity, temperament, and possibly years of intervention.  Unless you plan to quit your job, obtain a degree in behavior analysis, sell your home and move in to become a permanent ABA coach, it’s best to avoid leading questions and insinuations such as this one.  With all due respect, you may not have all the information you need to discuss or judge this.

"As long as I'm living, my baby you'll be." - from Love You Forever

3.  “She is so lucky that you love her so much and that she has you for a parent.”  Please take a moment and think about what you are suggesting.  Don’t all children deserve the love of their parents?  If a child – through no fault of their own – is born with some physical or mental imperfection, should she have to accept a reduced level of parental love and pride?  Children are owed love, pride, and affection by their very birth — not luck.  If you wish to dole out compliments, why not simply tell us how cute or sweet our kids are or that you think we are good moms and dads?  That works for parents of all kids.

Our babies are just as precious to us -- no matter what side of the vaccination debate we take.

4.  “Did you vaccinate your child?”  The very fact that you would ask this question means that you are divided into one of two very opinionated camps.  The first being the Vaccinations-Are-the-Sole-Sause-of-Autism-and-What-a-Shame-You-Signed-Off-to-Do-This-Thereby-Causing-Your-Own-Child’s-Autism.  The second being the I-Hope-You-Aren’t-Some-Stupid-Whacko-Who-Is-So-Irresponsible-as-to-Not-Protect-Your-Own-Child-from-Disease-Therefore-You-Shouldn’t-Be-Allowed-to-Even-Be-a-Parent.  Parents of autistic kids get jumped all the time with this question.  Don’t ask it.  You force us to either confront our own regrets or justify our choices to a disapproving audience.  Both scenarios stink.

If there really was an instant cure for autism, don't you think it would have actually made the evening news? The polio vaccine certainly did.

5.  “You should go to such and such a doctor or try this who/what CURED some Random Person I Read About in a Magazine’s kid.”   Even supporters of DAN treatment and dietary intervention (GFCF), don’t usually claim a total cure.  After all, a total cure would mean the dietary intervention is no longer necessary.  Instead, some parents have reported improvements in their children’s symptoms and interaction.  Some significant improvements.  And some non-existent ones.  Many of us have tried it and abandoned it due to lack of results.  Many of us support biomedical treatment and are happy with the results. Some of us have tried other regimens and therapies with varying results.  Again, you force the parent into justifying their choices.  I promise you – promise you – we’ve all heard of biomedical and other treatments for autism.   And made our decisions on the issue based upon our own research and instincts — long before you read that magazine article or talked to your friend’s cousin twice removed.

Would that we all could see into the future...

6.  “When is he going to talk?  Will she be able to read?  Will he be self-sufficient?  Will she ever be able to marry?”  Honestly, we don’t know.  Autistic kids do things on their own timetables, sometimes years after their typical peers.  Some will go on to college and raising families.  Some will live on their own with minimal assistance.  Some will require life-long care.  These are the questions that haunt parents of autistic children.  These are the questions that wake us up at night and steal joy from the here and now.  Please don’t remind us of our worries.  It serves no purpose to be reminded of what we cannot control.  Look inside your heart and consider your purpose in asking such questions.  Curiosity isn’t a good justification.  Instead, simply ask how our children are doing, though you might get a longer answer than you were hoping for.  If things are looking up, you can be assured we’ll enthusiastically brag about it.  If they aren’t, you won’t have asked us questions we cannot answer.

No. I promise you. No matter what, you could and you would.

7.  “I couldn’t do what you do.  I could never handle it.  God gave you this child for a reason.”  I know you mean well.  But, really, if your child had been born with physical or mental challenges, would you have abandoned him?  Of course not.  We didn’t volunteer for this, nor did we volunteer our child for the difficulties he faces.  And some of us take exception to the idea that God did this to any child.  I don’t think the suggestion that God inflicts any difficulty or malady on defenseless children speaks too well for Him, does it?  Autism happens.  It happens to children.  And it happens to the parents who love them.  You would have loved your child just as much had it happened to you.  If you want to tell me you think I’m doing a great job,  thanks for the encouragement.  But if you convince me that you wouldn’t do the same for your own child, then I don’t think I would like you very much.  And I wouldn’t believe you anyway.  I think you would walk through the very same fire for your precious child as I would for mine.  Really.  Have a little more faith in the power of love.

If your expression resembles this when speaking to a parent of an autistic child, go someplace else until you can control it. Really.

8.  The Look of Tragedy.  Believe it or not, the Look of Tragedy is a statement in itself.  You might think that your expression of sadness and devastation isn’t obvious, but it is.  If you are overwhelmed with sadness for us or our children, just wipe that expression right off your face.  Why?  Because it hurts.  Practice it in the mirror if necessary.  But the Look of Tragedy is the worst thing to say of all.  It says that someone has looked at our situation and sees it as hopeless.  Trust me, hope is a very precious thing for special needs families.  Please don’t endanger ours.

“You people are awfully sensitive.  So what can I say?”  We know you probably mean well.  But sometimes the thoughts we don’t want others to hear come through loud and clear in the things we say.  When people or their loved ones have obvious physical or mental differences, they hear the same thoughtless comments repeated to them for years.   This can make you overly sensitive to be sure.  However, I firmly believe that most people are good and don’t want to be hurtful to others.  I believe that, if shown how a simple statement can be needlessly upsetting to others, that most people will stop saying it.

Here are some things you can safely say:

“I love you.”

“How are you?  How is your family?”

“Is there something I could do to help?  How about if I….”

“You are a great mom (dad).”

You really can’t go wrong with these.  With any parent of any child.  :)

If you enjoyed this post, you might also like:  “Dear Shopper Staring at My Child Having a Meltdown in the Grocery Store” or “So You’re Wondering If Your Child Might Be Autistic”.

You might also enjoy:  “What to Say to the Parents of a Baby with Down Syndrome: Dos and Don’ts”.  

Membership Rewards: 10 Perks to Having a Child with Autism

Since I tend to write someone dramatically and have been known to drag my soapbox around, it occurred to me that it is high time I write something happy.  For not everything about autism is sad.  Some of it is inspiring.  Some of it is funny.  And there are definitely good things about raising a child with autism.  Sometimes we forget to tell others.  And sometimes we forget to remind ourselves.  :)

1.  Folks tend to nominate you for sainthood.  We, of course, know that it isn’t us that are special.  It’s the child that makes you special.  But glowing praise never hurt anybody.  And, sometimes, a little pat on the back is what you really need.

2.  The sweetness of the baby years lasts longer with developmentally delayed kids.  And, if your child is a sensory seeker, you can get all kinds of skin to skin snuggling for years. 

3.  You will connect with people and form friendships based upon your shared experience in raising special needs children.  These are amazing people whose hearts and minds have been tempered by this life-altering journey.

4.  If your child has food aversions, you won’t hear a lot of “I want that!” in the grocery store.  I’ve never once had to give up my own food for my ASD child.  My NT daughter, however, is a persistent mooch.

5.    You will develop an appreciation for detail.  The details that your ASD child is so good at fixating upon.  I now notice more about the world than I ever did – the sounds, the smells, the textures, etc.  I have him to thank for that.

6.  Their toy wish lists aren’t extensive at all.  Young ASD kids get way more excited about household objects than toys.  This makes birthdays and Christmases less about things and more about appreciating your blessings.

7.  You become more patient with both others and yourself.  There is simply no other option.  You discover that it isn’t just the child who is growing.  You are as well.

8.  We take nothing for granted.  Not a single thing.  When you live in the unknown, all progress is singularly wonderful.

9.  You now have the ability to reach out to others beginning the same journey.  Which means that you have knowledge, skills, and compassion that can touch the life of another in need.   You can be the reassuring hand reaching out in the darkness.

10.  The child.  He or she is the best reward of all.

P.S.  It has been pointed out to me that I failed in mentioning a primo perk to having an ASD child – Fast Passes at Disney!  Sea World, other theme parks, etc. They’re called Guest Assistance Cards and require a doctor’s note.  They allow autistic kids and their families to enter/exit via a less congested area to help prevent sensory overload, etc.  Parents of ASD kids rave about how this simple thing can save a family vacation.  :)

What membership perks have you discovered in having a child with autism?

If you enjoyed this post, you might like this one by Autism Daddy.  It’s a similar list and funny!

13 Cool or Helpful Gifts to Give a Special Needs Parent

These kinds of lists typically come out in December.  But it occurred to me that gift-giving happens throughout the year.  You may have a child, sibling, or friend who parents a special needs child and are wondering what kinds of things make nice gifts.  You may know of a special needs family struggling and wish there was something you could do to help.

Therapy, special foods, DAN doctors, regular doctors, medications, in-home services, diapers, special beds, special toys, listening programs, etc. cost money.  A lot of money.   If special needs parents aren’t made of money to begin with, it’s a killer.  When you take into consideration that many of us have other children (perhaps young children requiring daycare), money gets tight.

So what can you do to surprise some special needs parent in your life with gift they would truly enjoy or even a gift of help?  Well, I don’t actually know all special needs parents.  However, I have noticed that many of us are like-minded or, at least, in the same boat.  (At the very least, it’s a good place to start for my friends and family, right?)  You may notice that my list is made up of a lot of gift cards.  I’m a big fan of gift cards.  They can be replaced when lost.  And, they tend to get used for their purpose.  Give a mother plain old cash and she’ll get talked into giving it to her kids.  Give her a gift card and the gift goes to her.  Or dad as the case might be.   So, here’s what I’ve come up with:

1.  Gift card for family portraits.  When times are tight, we tend to put things like this off just a little while longer.  One of the best gifts I ever received was a session for my little one’s Christmas pictures. 

2. Diapers and wipes.  No, seriously.  Some of our children are still in diapers.  And some of our children will always remain in diapers.  They get even more expensive with each increasing size.  Some of our families use specialty diaper sites, so you might want to inquire and then look into purchasing a gift card.

3.  Grocery store gift cards.  Many of our kids are on special diets.  And even more of our kids have food aversion.  Some of them will eat only a few particular foods which can get expensive.  Since grocery budgets are one of the first things that people try to cut back on when saving money, a grocery gift card would be appreciated by families.

4.  A little pampering.  Find out who Mama’s hair stylist is.  Call her.  Ask what Mama would get done if she could have the works – color, highlights, brows, whatever.  Write a check for a gift certificate to be redeemed at Mama’s convenience.  This is the first thing I drop when money is tight.  And the thing I miss the most.  If this isn’t something she loves, she probably will still appreciate a gift certificate for haircuts for the rest of the family. 

5.  Drive-through/pizza gift cards.  Many of us have a lot of late days following various therapies and doctor appointments.  (My son has seven therapy appointments a week!)  On days like this, the last thing you feel capable of is cooking dinner.

6.  Theme park gift card.  A trip to a water park, Disney, etc. is a distant dream for those on a tight budget.  The opportunity to take one’s kids for a family fun day is something special indeed.

7.  An afternoon mani-pedi with a girlfriend.  This is one thing she won’t buy herself if funds are stretched.  Pure bliss.

8.  Movie theatre gift card.  This can be great for the whole family or just a date night for mom and dad.  Hard to go wrong here.

9.  iTunes gift card.  No, really.  Many special needs families these days have iPads and have to purchase the educational apps they download for their kids.  Even if they don’t, mom or dad may have an iPod, etc. that hasn’t heard a new song in a long time.  This is the kind of treat you forego when tightening budgets.

10.  Amazon or B&N gift card.  If mom or dad is a reader, then they might enjoy the treat of a new book.  It’s a splurge when times are tight, but a thrill for book lovers.

11.  Gift card to favorite sporting store, golf course, neighborhood pub, etc. for Dad.  Dads, too,  need time with their friends or an opportunity to enjoy their hobbies.

12.  Gift card to a nice restaurant.  For two.  Because date night is a needed thing.

13.  A night away in a hotel or B & B.   After all, sometimes tired mommies and daddies need reminders how they got these special children in the first place.  😉

So, Special Needs Parents, do you have any other suggestions for great gifts? 

14 Things I’ve Learned in My Very Short Special Needs Blogging Career

Since beginning this blog just short of a month ago, I’ve had a few people email me to ask me questions like, “Is it hard to set up a blog like this?”, “How did you learn how to do this?”, etc.   While it is awfully nice that they would ask me these questions, I am a newbie.  But it got me thinking about my experiences with blogging over the past few weeks, and I find that I have learned a few things.  So, if you are thinking about starting your own ASD/special needs parent blog, here’s what I have gleaned so recently:

1.  You can’t just start a blog and wait for them to come to you.  It doesn’t work that way. You must use social networking to find your potential audience.  Twitter, Facebook, Pinterest, and the like serve a purpose — they connect you in very different ways to people who share your reality.  And, by doing that, you will find amazing blogs whose audience you wish to join.  Most importantly, interacting with the special-needs community will teach you quickly that you are not alone.

2.  Self-promotion can be a tricky thing and feel unnatural for those of us who’ve never worked in sales.  You have to do it, or  no one will find your blog.  But you also don’t want to do it in tacky ways, so finding the right words when promoting your blog can be hard.  If you are like me, it will be a test of your courage to step out on that stage for the first time.

3.  As soon as you begin reading blogs of other parents, you may feel not worthy.  Suddenly, the challenges you are facing with one toddler who is likely on the milder end of the ASD spectrum pale in comparison to the mom who is raising six kids with severe ASD, is in foreclosure, and battling cancer.  You might feel like you have nothing to say or offer.  You have to remember that everything in life is relative.  No matter what our children’s challenges are, we all love and worry about them exactly the same.  It is important to neither discount yourself nor discount others.

 4.  If you put a picture or a name out there into the blogosphere, you will be discovered by those in your real life, particularly if it is a special needs blog.  There are a lot more people who connect to the special needs community than you might imagine (teachers, therapists, doctors, nurses, social workers, etc.).  It’s a smaller world than you perceive it to be.
5.  There is such a thing as blogger’s regret.  If you think that you felt stupid over a verbal flub made in front of your co-workers, imagine how stupid you will feel when 25,000 people read it.  The printed word can say everything and yet it often doesn’t reveal the subtleties of intonation, irony, and humor.  You will re-read a post and realize that it might possibly come across in a very different – and likely unfortunate – way than you intended.  This can make you feel a little like you’re doing the walk of shame from your college days.

6.  You will receive hate mail.  You might get 100 positive and supportive comments, and only one negative one.  Depending on your constitution, this might be the one your self-esteem fixates upon.

7.   People are not always what they seem like online.  There are sharks out there offering iPads, and special needs resources if you’ll just take a moment to give them all your private information.  These people will try to befriend you and hitch their wagon to you before revealing their true nature.   You have a moral responsibility to rid your blog and social networking from the appearance that you support these folks and not allow them to lurk around.

8.  Having a post go viral or get Freshly Pressed (or some other such net attention) is exciting for a day, maybe two.  Then reality sets in, your stats drop, and you wake up with blogger’s block.  Most blogs that go viral, including yours, really will be a one hit wonder.  Perhaps if your blogging intention is merely to make money, this might bum you out.  If you are blessed to be blogging about something that is important to you and others, then obscurity isn’t all that significant.  When it comes to blog recognition, we can’t all be Dooce, and most of us will probably have to keep our day jobs.

9.  Those wonderful folks you are connecting to online are real people who matter.  But the real people who live in your house and actually know your phone number and home address matter more.  Of course I knew this before I started blogging, but I didn’t know how easy it is to get caught up online.

10.  There are a lot of really stupid fake awards, badges, “contests”, etc. that you can clutter up your blog with and distract you from your real purpose – writing useful content.  If all you have to do is register and copy/paste some code into a text widget, you really haven’t won anything.  If your content stinks, visitors won’t be impressed with all those badges either.

11.  There are a bunch of ethical considerations when blogging.  Should you use your real name?  Is it okay to tell the world about your child?  Is it okay to make money blogging about something as serious as ASD/special needs?  How do you balance honesty and advertising?  Bloggers make different decisions about these for different reasons.  It’s important not to judge others’ decisions and to find the answers to these questions that will suit both your blog and your conscience.

12.  You might regret letting those in your real life know about your blog.  Especially if you live in a small town.  It really can stunt your writing.  Suddenly you worry what your flesh and blood friends and family will think of what’s really going on inside your head.  Once you start worrying about what other people think, you then aren’t as free to write what you really need to say.

13.  There’s a world of people out there who know exactly how you feel.  They are rich and poor, blue-collar and white-collar, religious and atheist, left-wing and right-wing, American and international, and every sort of dramatic variation there can be.  But they know your heart and mind.  They too have held a child tightly in their arms and wished it was possible to take away the challenges they will face or heal them with nothing more than a parent’s love.

14.  Think twice before blogging about your mother-in-law.  It just might get a little more traffic than you anticipated.  And then you will constantly be looking around, waiting for the inevitable.  Theoretically speaking, of course.  😉

I really do have a LOT more to learn.  I am planning to move to — as soon as I get up my nerve.  And I have a lot of technical things to figure out about optimizing my site, blogging support forums, something about a sitemap, etc. etc.  Everything you need to know can be found online, of course.  It just takes a little time to learn what you need to learn.  But, overall, it has been a profound and cathartic experience.  I urge those of you thinking about it to give it a whirl.

So, Fellow Bloggers, what have you learned from your blogging experiences?

11 Things I’ve Learned Since Becoming a Special-Needs Parent

A few days after I published this post, the nice folks at WordPress “Freshly Pressed” it.  A big honor and one I am very thankful for.  Because of that, I ended up meeting lots of new readers and bloggers.  Thanks so much, WordPress!  

1.  Not knowing is a lot harder than knowing.   Yes, there is a lot we can do via therapy to help our children walk, talk, learn, etc.  But the hardest thing to admit is that most of it is simply up to their brain and its wiring.  There are no certain predictors that a special needs child will develop speech, be able to read, be potty-trained, or become self-sufficient .  Good signs, yes.  But nothing is certain.  The not knowing can drive you crazy if you let it.

2.  The internet is a blessing and a curse.  On one hand, there is valuable information out there.  Yet, information overload can get you stuck.  You end up reading too many awful things — that often don’t apply to your child at all — and it can deplete your hope and make you paranoid.

3.  Connecting to the special-needs community (whether it be acquaintances, support groups, or the internet) can be both a lifesaver and bummer.  It is vital to find people who know what you are going through.  Yet, sometimes it can produce even more negative feelings.  Since there is always someone who has it worse than you, it can make you feel guilty for complaining.  And, since there is always someone else who has it much better, you can sometimes forget that, when it comes to parenting, stress and worry are relative.  Those people are just as immersed in their concern over their children as you are and, understandably, aren’t grateful simply because it could be worse.  It can always be worse.

4.  Holidays  and special events magnify the situation.  Birthday parties are no longer joyful events.  Your special needs child is in an unfamiliar setting, one with all kinds of new dangers.  You actually have to observe typical children alongside your child, so his delays  and social difficulties are painfully obvious.  People naturally want to know what to buy your child.  And you might not know.  He might not play with toys.  And you will have to endure the present opening and cake cutting that your child is tuning out in front of everyone present.  No matter what is said and done, there is an air of sadness.  Ditto for Christmas.

5.  Well-intentioned people will silence you and add to your frustration.  They don’t mean to, but it is human nature to comfort and soothe.  Invariably, they will attempt to do so in awful ways.  Some will deny there is a problem and say that everything will be just fine.  By denying there is even a problem, they effectively silence you and leave you isolated in your own mind.  Some will try to remind you how grateful you should feel.  And, while gratitude is a great thing, being reminded that you aren’t just makes you feel worse.

6.  Picking your battles will take on a whole new meaning.  A lot of folks will look at you like you are crazy for “giving in” to a 24/7 diet consisting of nothing but chicken nuggets and crackers.  Even more will judge you for “giving in” to what they view as tantrums and being spoiled.  You, however, know that therapy, joint attention activities, and getting to school are the real nonnegotiables.

7.  People will surprise you.  Causal acquaintances will step up to be better friends than the friends you most believed you could count on.  There is nothing like becoming a special needs parent to give one clarity.

8.  Doctors and other experts really don’t know everything.  Your pediatrician and other persons doing behavioral screening may not see what you are so worried about and may try to convince you nothing is wrong.  They may encourage you to wait and see.  You will want to believe them and may forget that child development really isn’t their speciality.

9.  If you aren’t a naturally assertive person, you will have to become one.   People ranging from loved ones to Early Steps to the school system will give you a lot of reasons why they can’t meet your child’s needs.  Even if it goes against your nature, you will have to fight for him.  You will have to insist — which is both harder and easier than you might expect.

10.  It’s easy to neglect others when you are caught up with the needs of one child.  You can forget the importance of date night with your spouse.  You might forget a friend or loved one’s birthday.  You might realize that your typically developing children aren’t getting enough attention from you.  And you might realize you are not taking care of yourself and are about to fall apart.  You will have to figure out a way to stay both connected and together.  This is hardest thing to learn and do of all.

11.  You will develop an appreciation for the little things.  There are moments of interaction and progress that will steal your breath.  Hugs and kisses are unbelievably precious.  And you will understand why this little soul was given to you. It’s because you are a perfect match for one another.  And that is what sustains you through everything else.

So, what about you?  What have you learned?

If you liked this post, you might also like these:

Letter to My NT (Neurotypical) Child

An Apology From Your Child’s Former Teacher

Reply to a Disgruntled Reader

10 Things I Wish My Mother-in-Law Hadn’t Said About My Autistic Child — And the One Thing I Wish She Had

From the Rooftop:  Autism Disclosure

Dear Friend Whom I Haven’t Seen Much of Lately

Stirring Up a Hornet’s Nest:  Free Advice and the Vaccine Controversy