To Help or Not To Help.... That Is the Question

I don't know if you read the comments on yesterday's post but all of them were super.

My friend, Elizabeth, raised an interesting question.  It was such a good one that I thought I'd just let it be the focus of today's post.

Here's her question in case you missed it:

"Lana, we were recently on a plane trip with a single mom whose two-year old son was completely and utterly out of control on the plane.

I have a question for you, and I know you can't answer for everyone, but I'd be interested in your input:

I desperately wanted to ask the mom if I could help (hold him and walk him up and down the aisle, play with him to distract him, something!) but I did not follow through on my urges.  Had I been sitting directly next to her or in front or behind, I absolutely would have (I think). (I was a couple rows back and across the aisle.)

How do you think you would respond if a stranger offered you help (not judgement or advice)?  Is it even MORE embarrassing and/or contributes to the problem, or, do you think it's a welcomed response?

I ask, I guess, because for those of us who do not have special needs kids, we don't always understand; we may judge, and assume the parent(s) can't or won't control their kids (whether special needs or not), and we need help in knowing how to best respond in that type of situation.  Offer help?  Or just stay the heck outta the way?

What do you think?"

Just as Elizabeth stated in her question, I obviously can't answer for everyone.  But I'm going to give you my opinion because you know I have one!

But before I get started, I need to let you know that my friend Elizabeth is wonderful.  She is helpful, sweet, friendly, and an all-around genuinely nice person.  I am in no way referring to her or her actions as I am answering this question.  Her question opens a dialogue and communication is how we learn to better help each other.  So cheers to Elizabeth for truly wanting to learn more about the special needs community because as we know, awareness is key.

Let's get started!

I don't believe you can ever go wrong by simply making a kind offer of assistance.

But here's the key:

Speak to the parent and not the child.  Make your offer short, sweet, and simple.  Make it good for the duration of the flight. (I don't mean you have to babysit the whole flight - see the example below)  And do not try to engage in conversation.  The parent is distracted enough and cannot focus on both her child and you.

This is what I would NOT do:

"Little boy, didn't your mommy teach you that big boys don't cry?  And that it's not nice to yell around other people?  You are wearing your mother out.  If you stop making such a fuss, I'll give you some gum."

You may think you're sticking up for the mom but this approach really doesn't help anyone.  And it's never smart to offer kids any food items at all without asking the parent's permission first.

Here's what I WOULD do:

A child is crying without ceasing on a flight and just seems to be unable to calm down.  I would approach the parent and say, "Hi.  I wanted you to know that I am happy to help you out in any way I can if that would be helpful for you.  I have an iPad that I could use for watching Mickey Mouse with your child or I can walk him up and down the aisle of the plane for a few minutes, whatever you think might work.  If now's not a good time, I'm in seat 13B.  Just feel free to come get me.  I'll check back in a few minutes to see how you're doing."

Here's what that tells the parent whose child is wigging out:

1 - There is at least one person on this plane who doesn't hate me and my child.

2 - While I may not take him up on it, I really do appreciate the fact that he did something rather just rolling his eyes and heavily sighing like everyone else around me.

3 - There are still some nice people in the world.

4 - I was ready to put my head down and cry alongside my child but now I can keep going just a little bit longer because I feel like I have an ally.

Again, the parent may or may not accept your offer.  That's not really the point, to my way of thinking. The issue is letting that parent know that you have been right where they are, you remember what it's like to travel with small children and how unpredictable their behavior can be, and while you're willing to help, you also want them to know it's OK.  

And I think that is just a nice thing to do for anyone with children, special needs or not.

Now with a special needs kiddo, odds are good that you'll get turned down in the actual handling of the child, unless you happen to be a therapist or special ed teacher or something super nifty like that and you swoop in to save the day for which the parents (and everyone else on the plane!) will be eternally grateful.

But you might be able to help by getting a bottled water out of a bag or refilling a sippie cup with juice or starting a DVD while the parent is holding the child to calm him.  Those things are just as helpful, if not more so, because while Lily might question a stranger holding her, she doesn't care in the least who gives her a bag of pretzels.  Actually, Lily probably wouldn't care if a stranger held her but that's my child's personality.  Lily might have a tantrum in an airport and there might not be a dang thing you can do to help me.  But by simply making the offer, you have helped me more just by being nice to me than actually doing any task.

Bottom line is this - if you offer help in a kind and non-judgmental manner and a parent gets mad at you and tells you to mind your own business, they are the one with the problem, not you.

Sometimes, I think we worry so much about offending that it prevents us from doing some really nice stuff for people.

And I, for one, like it when people do nice stuff for me.  And I like doing nice stuff for people.  And I don't want to not do something nice for someone simply because I'm fearful of their response.  

Remember that bumper sticker you used to see so much that said "Practice Random Acts of Kindness and Senseless Beauty"?  Well, I'm not so much concerned with the senseless beauty part.  But let's make a pact, OK?

Let's be kind.

To people we love.

To people we don't know.

We are responsible for our behavior -  not anyone else's.

So let's just be kind.

  

Flying the Friendly Skies.... At Least I Hope So

Traveling with kids is always a challenge.  But traveling with special needs children can add a whole nother layer of challenge to the experience.  Now that I know we're going to be flying to California in October, I have a little over two months to worry about Lily on the airplane.

So can you guess what I've already started doing?

If you said googling tips on traveling with special needs children, then you're correct!

And wouldn't you know it?  I've come across some pretty helpful stuff already.  And really, most of what I've found is helpful information for all kids and their parents.

Even though we're coming up on the end of summer, so many families travel throughout the year nowadays that I thought I'd go ahead and share some of the best ones with you.

Pick Your Seat.  If at all possible, book the first row of your section so that your child has nothing (or no one!) to kick but a wall.  Yes, you lose the storage under the seat in front of you, but you gain peace of mind in not having to tell your child to stop kicking the seat in front of him 362 times.  If you can't get the front row, maybe another adult or older (and very patient) sibling traveling with you might be willing to take the seat in front of your child.  At least then your child is kicking someone who loves him no matter what!

Take The Carseat.  Yes, it's just another thing to carry.  And it's not even an easy thing to carry.  Especially when you're thinking your kid might take off at any moment and you need to be light on your feet and able to react quickly.  But it's worth the trouble because if your carseat is anything like Lily's, it provides 5-point maximum restraint - something that will be much more beneficial than that little lap belt. And I'm not just talking for safety reasons here, if you get my drift.  That lap belt would take Lily all of three seconds to realize she could undo which she would then proceed to undo 362 times.  Fortunately, Lily likes her carseat and she's comfortable with it so it will remove the "new seat" factor that an airplane seat would present.

Tape a Picture Over the Lap Tray Latch.  This tip I LOVE.  How many times have your kids discovered that sliding that little latch over releases that little tray and it falls down?  And then they put the tray back up and repeat the whole process 362 times?  As soon as you get to your seat, before your kid realizes what that white thing on the seat back is, tape a fun picture over the whole tray table that covers the latch and leave it there the whole flight.  I've even seen those hanging seat organizers with pockets for crayons, coloring books, handheld games and the like that you might put there, especially if you know the person sitting in the seat in front of your child.


If At All Possible, Fly Non-Stop.  It's hard enough waiting in line to board and getting settled in your seat without having to do it multiple times.  Depending on how much it is, it just might be worth the extra money you spend in order to prevent possible meltdowns.  


Bring Lots of Stuff.  Lots.  Handheld games, iPads, iPods, DVD players, laptops, headphones, crayons and coloring books, puzzles, books, magnetic games, lacing cards, stringing beads, non-staining playdough, Barbies... whatever will help keep your child busy and happy.  Don't bring it all out at once.  And don't let your child see all of it.  Just hand him one thing.  Or ask if he wants to color or do a puzzle.  Then as you see him start to get a little restless, put that thing away and bring out something different.  Make each thing last as long as you can.


If You Need Help, Be Specific.  As parents of special needs children, we've had lots of time to learn the ins and outs of caring for our kiddos.  Just saying your child has autism might not mean anything to the gate agent.  Be specific.  For example, if waiting in a crowded terminal overwhelms your child, briefly explain that to the gate agent and ask where there might be a quiet corner where you could sit with your child until time to board.  Be nice and remember - you catch more flies with honey than with vinegar.  Who knows - if you're really nice, you might get a better seat.  I've seen it happen with my husband multiple times.  He has the gift of schmooze and it comes in handy!


Give Yourself More Time Than You Think You'll Need.  Rushing around will only make you more cranky and frantic and therefore your children more cranky and frantic.


I don't really know how I feel about this next tip yet.  


We've all been out in public, seen a child having a tantrum and and made an automatic judgement call about how we would handle that kid if he belonged to us.  I've done it myself.  Of course, my eyes have been opened and I now understand that I don't know it all!  I'm not so quick to judge anymore and I'm much more likely to offer help.  


To address this judgement issue, I know a couple of moms who have resorted to having their children wear special t-shirts when traveling.  T-shirts that let people know their children have autism and that some of the behaviors they exhibit are attributed to that.  


For example, look at these tees from Cafe Press:








They even have shirts for moms or dads to wear if you don't want to put one on your child:


And then some of the shirts have a little more direct message, I guess you could say:










While I have felt like saying some of the things that are on those last five shirts, I don't think I would ever actually wear one.  Or put one on Lily.  If I'm asking people to be understanding or seeking to educate them, I don't think I'm going to accomplish that by being antagonistic.  Though staring and rude comments directed to me or my child can be perceived as antagonistic, I certainly don't have to sink down to that same level.

A large part of me thinks it's no one's business and if Lily has a meltdown, then she has a meltdown. We deal with it and move on, just like we would if we had a child without special needs who was having a tantrum.  But the way we handle these situations is what makes them a little more unique.  For example, if we needed to do a holding position with Lily to calm her down, it's going to look a little strange to outsiders.

I'll have to think on this one a little more.

Any travel tips you want to pass along?

And what do you think - T-shirt or no t-shirt?

Talk to me!

All Clear On The Nasal Front... Plus Some Great News

Just in case you missed it, I posted a little something extra last night in honor of Reagan's birthday so be sure to read it!

So, the ENT visit yesterday turned out to be pretty uneventful.  She checked up Lily's nose and declared it free of foreign objects.  Just to be 100% certain though, she pulled up the scans from Lily's hospital stay and she could actually see the nasal passages.  So now we know for sure that her nose is free and clear.

I'm not going to lie - Ryan and I were really hoping that doctor was going to pull out some humongous lima bean or something and say, "Well, problem solved! Now go forth and cry no more!"

No such luck.

I'm all out of ideas so now we just wait to see if the behavior resolves on its own.

In the meantime, I have some wonderful, incredible, exciting news that is an answer to all of our prayers:

Lily is going to California!

Well, not all by herself, just to clarify.  Our whole family is going.

We got a phone call that Dr. Michael Goldberg, the doctor we were hoping to see in California, is going to take Lily on as a patient.

We are beyond excited!

The appointment isn't until October 11th but with the way time flies lately, it'll be here before we know it.

When I found out we were in with the doctor, I asked Reagan this: "Reagan, would you be interested in missing a few days of school in October to go to California?"

Her response?

"You had me at missing a few days of school.  I didn't really care what you said after that."

Can you tell someone is really sad that summer is just about over?

Thanks to all of you for your prayers for California.

Now, if you'll just pray that Lily will recover from whatever mysterious ailment is going on with her and that we have a nice, easy time of travel, I will love you forever!

And Mr. Steve Jobs, if you're reading this, October would be a great time to donate your private plane for a little flight from Texas to California and back, I'm thinking.  Have your people call me.  We'll talk.

My Baby is.... 15?!?

Pre-Post Note - I apologize for the weird gaps in between some of the pictures.  You know I am a technical dunce and my computer geniuses are at camp this week.  I'm pretty impressed that I managed to figure out how to do the scanning all by myself.  I can't be bothered with gaps, too.  Read on...

I know this is highly unusual but I couldn't miss out on putting another post up because today is a special day.

Today is Reagan's 15th birthday.

Fifteen years ago, I gave birth to the longest, skinniest baby the Askew and Rush families had ever seen.  At her two week check-up, the pediatrician told me to go home and put some meat on her bones.  I've been working on it ever since!

Reagan's at Student Life Camp this week and I'm finding it really strange to not have her here, putting a candle in her pancakes at breakfast and making Ms. Amy Lingenfelter Cake for after supper.

My Reagan is one of a kind.  Most people think she is quiet, maybe even a little shy.  But once you get to know her, you discover that not only can she talk your ear off, she's quick with the one-liners.  She is definitely the clown of our family.

One of the things I'm most grateful for is seeing what a great big sister Reagan is, something none of us would've known if The Bird hadn't come along.

Happy Birthday, my sweet Reagan!  We love you bunches!

We're Off To See The Wizard... I Mean ENT

First of all, I need to tell you that we made it through the evening yesterday with not a single crying spell or meltdown or anything.

Woohoo!

We had a perfectly lovely night with our perfectly lovely baby girl.  And for that, we are quite thankful.

These 6 PM crying spells of Lily Bird's had me remembering when Ryley was a colicky newborn and we knew she would begin crying at 5 PM every day and it would last an hour and a half.  It was brutal.  Each day, as 5:00 approached, a knot would just start forming in my stomach.  It was like knowing something awful was going to happen and you could do nothing to stop it.  I was so happy when those days were behind us.

And I am hoping and praying that maybe we have turned a corner here and these 6 PM meltdowns will become a thing of the past.

The middle of the night was more rough than the last couple of weeks.  Lily saved her crying spell for 1 AM and she finally fell back asleep around 2:30.  After trying several things, I finally just got in her bed with her, something she generally doesn't like.  But I think she was so exhausted by this time that she just kind of collapsed beside me and fell asleep.

One final piece of the puzzle we're looking into today.... going to see an ENT at 1 PM to have Lily's nose thoroughly investigated.  If there's something up there, this doctor's going to find it.  And hopefully get rid of it.

I'll go ahead and let you know this - if there's something up there, I'm not taking pictures to share with you.  It'll be a full time job just standing upright, taking deep breaths and trying not to pass out.  I'm pretty sturdy with most medical procedures but something about the nose and foreign objects makes me feel a little woozy.

I can't tell you how many times I just shake my head at the irony of having not one, but two "medical" kids.

When I was in second grade, I knew beyond a shadow of a doubt that I wanted to be a teacher.  I also knew, beyond a shadow of a doubt, that I never wanted to be a nurse.  I did go to college and get a teaching degree and I did become a teacher.

But I'll be danged if I'm not a nurse, too.

God does have a sense of humor, and He often displays it in my life.  Today's ENT appointment is just another example of that.

Have a great Tuesday!

And The Doctor Said....

I was hoping to get a post done over the weekend to fill you in on the neurologist's appointment but I just never had enough time to sit down and gather my thoughts.

So here it is:

In comparing Lily's two MRIs (one done at 5 months of age and one done at 4 years of age), it appears that the spots of missing white matter are new.  Or at least, they weren't present in the five month MRI.

But.... are they new as in really recent and tied to her irritability?  Or are they new as in one year old?  Or two years old?  Or are they in some way tied to the regression that took place when she was 18 months old?

And the answer is.... no one knows for sure.

ARGH.

So what's the next step for Lily?

Another MRI in two months.

But there is some good news and that is what we'll choose to focus on.

First bit of good news - Lily was tested for Multiple Sclerosis, a condition very much tied to brain white matter loss.  The test results were 100% negative.

Second bit of good news - When people have degenerative white matter conditions, the symptoms manifest themselves in very physical ways, such as falling down frequently, being unable to keep your balance, losing muscle control... things like that.  Lily has absolutely none of these symptoms.  Therefore, the neurologist is very comfortable in saying that Lily does not have a degenerative white matter condition.

We are praising the Lord for this report!

Because of all this talk of white matter, I have spent some time on the Internet (the source of all things true and accurate when it comes to medical information!) and learned just enough to be dangerous, I think.

But one interesting thing I did pick up that was confirmed by the neurologist as being true and accurate is that all of us can have temporary spontaneous white matter degeneration and regeneration.

During a time of acute illness, a person's white matter can degenerate and as they get well, it can regenerate.  All on its own.  All perfectly normal.  And all without anyone knowing.  Because most of us don't run out and get an MRI every single time we get sick.  But odds are that when we are sick, our brains look just a little bit different than usual.  Interesting, huh?

I say all that to say that we may have just caught a picture of Lily's brain when something is going on that may have nothing at all to do with the brain.  And the only other MRI we have to compare it to is when she was recovering from open heart surgery, a time that her brain may also not have looked "normal".  Make sense?

So the next MRI will take place when Lily is perfectly healthy and displaying no unusual symptoms of any kind.  Then we can assume that the picture we get that time will be her "typical" brain.  Or as "typical" as a child with her medical history can be!

OK - enough brain talk.

How is Lily acting now?

I'm glad you asked.

Most of the time, things appear to be mostly back to normal.  Or as normal as things get around here.

Lily is still having one or two unexplained crying spells a day.

Something will set her off and she simply cannot be soothed.  She will want you to pick her up and then immediately will want you to set her back down.  She can't seem to get comfortable and can't decide if sitting still or moving around feels better.  So she does some of both.  And sometimes she's angry while it's happening and sometimes she's simply sad.  It's quite frustrating for everyone and hard on a poor mom's emotions when she can't calm her child.

This week, I'm really focusing on what possible triggers, if any, might be setting her off.  It tends to happen for sure around 6-ish in the evening so I'm going to be watching closely for signs of discomfort or frustration or sadness or anything to see if I can get some clues.

Ryan even called the After Hours Clinic yesterday to ask if maybe Lily could've shoved something up her nose and it's been missed through all of this. (She's discovered her nostrils in the past month or so and is fascinated with them.)  The opinion seemed to be that if it was something hard, it would've shown up in the CT scan.  If it was something soft, like food, it would be really stinking now.  I've never had kids who put things up their noses so this isn't familiar territory.  Anyone have any thoughts on this?

OK - my fun little blog is starting to sound like a medical journal.  I promise to share something cute and totally non-medically related before the week is out.

Enjoy your Monday!