Monday, August 22, 2011

Learning To Ride

It's a right-of-passage...learning to ride a bike.  Every kid goes through it at some time.  It creates a new sense of independence and freedom for them, opening up all kinds of possibilities.  It's a feat we have undertaken this weekend.

Squirrel's been riding a hand-me-down bike all summer.  It's too small for her (her knees touch the handlebars) and it has training wheels on it still.  She didn't care--I only let them ride up and down our street, so it's not like she was flying around town on it or anything.  She didn't care--until she had a friend from school over to play, and her friend said that she learned to ride a bike in Kindergarten.  She didn't care--until the neighbor across the street, who's two years younger, learned to ride this summer.  So now, she cares.  She wants to learn to ride without training wheels.

Some people say we should've pressed this issue years ago.  Most kids lose the training wheels well before they are nine years old.  But Squirrel's not most kids.  She has a lot of trouble with balance and coordination--which bike riding requires a lot of!  She has a low frustration-tolerance threshold and gives up very easily.  She is strong-willed and defiant much of the time, so it's hard to teach her something new.  I'll admit--we didn't push the issue partially because we didn't want to teach her.  But we also didn't push it because she lacks the skills to be successful in the typical ways.

But...she wants to learn to ride a bike, and so I have taken it upon myself to teach her.  We bought a new bike with garage sale earnings (she sold a lot of toys to buy herself a new bike!)  She picked one that was green and black with orange tire rims--no girly pink or purple thing for her.  It's a sharp little bike, and she wants to ride it so bad.

We've tried a lot in the past few days.  We go outside for 20 minutes at a time--she doesn't tolerate longer periods, and I find myself trying really hard not to snap at her for the way she's expressing her frustration at me.  20 minutes is enough for each try.  She's not making much progress--I've let go of her for five, six, seven seconds, but she always falls.  She just doesn't understand how to balance her body.  She leans to one side, but she doesn't realize she's doing it.  She slides sideways on the seat, but doesn't feel that she's crooked.  She forgets to steer when she pedals, and forgets to pedal when she steers, and can't figure out the brake at all!

I've explained to her what to do.  I've shown her what to do.  I've pointed out her stiff elbows, and her leaning body, and her bottom in the wrong position.  We've watched you tube videos about how to ride.  The neighbor girl gave her pointers.  Daddy took a shot at helping her.  The thing is, you can't really explain to someone how to ride a bike--you just have to feel it for yourself.  The proper tension in your arms.  The curve of your elbows.  The movement of the handlebars in relation to the balance of your body.  These things can't be taught, they are just learned.

She will learn this.  It may take her longer than it takes most kids.  She will probably fall a lot more, and feel more frustration, and want to give up more times than your typical kid.  But when Squirrel puts her mind to something, she figures out how to do it, and I know this will be no exception.  I hate watching her struggle more than other kids do.  But I've seen her struggle before, and I know she'll make it.  And come out stronger and more self-confident for the extra work she endured.  She's a tough girl.  She'll make this right-of-passage and be pedaling around the block before we know it!

Then I can move on to worrying about the next thing.  Like how she fails to notice cars pulling in and out of driveways on her way around the block. (*gulp*)

Saturday, August 20, 2011

Finding Our Place

Sometimes I feel like an impostor in the special needs community.  My children both have "invisible disabilities," in that most people would never know by looking at them that there's anything different about them.  My children are extremely bright and gifted intellectually.  They can walk, run, and otherwise move just like other children.  They get excellent grades in school, participate in extra-curricular activities, and are completely typical kids for the most part.  Spend some time with them, and you may see some little quirks or behaviors pop up, but nothing that says "special needs."

Sometimes, I see the ways that my kids are just like typically-developing kids, and I forget that I am part of the special needs community.  Call it moments of denial, I guess--but it's also something more.  I am just so used to the way my children react to, and interact with, and move through the world around them, that I don't see it as unusual anymore.  Spinning, toe walking, chewing clothes, hands over ears, even meltdowns--they are common and expected when we are out in public.  It's our "normal," if that makes sense.  And, of course, I love them just the way they are, quirks and all.  In fact, I value those qualities in them that would make them "special" as much as I value any of their other qualities.  It's who they are!

But sometimes things happen to bring me back to reality, and assure me (or perhaps, remind me?) that we are indeed a special needs family.  Friday was one of those days.

On Friday morning, I met with Squirrel's teacher to tell her about some of the challenges and issues that Squirrel has in the classroom.  I told her how sometimes Squirrel falls out of her chair, and how she can never sit directly on her bottom, but is always on her knees, or on one foot, or in some other wacky position on the chair, because she's trying to find a position that gives her the best sensory input and helps her keep her balance.  I told her how she fixates on a strange noise, or a smell, or a wonky fluorescent light, to the point that she stops hearing the teacher at all.  I explained that she chews on everything, because it provides her with sensory input that allows her to focus better.  And how she has trouble with oral directions because of auditory processing problems, and trouble with written directions because of visual-motor delays.  And as the teacher expressed surprise and very honestly said she didn't know a lot of these things existed or could cause a child problems, I was reminded--I have a special needs child.

Later, I joined some friends for lunch at one of their homes.  As all our children were playing outside together, and all the moms sat and visited, I realized I was the only one jumping up every few minutes to intervene or remind my son how to play appropriately.  "No, Munchkin, we don't grab our friends.  We need to take turns with the toy--give it back please.  No, we don't knock someone down when they're in the way, we say 'excuse me.'  Honey, he doesn't want a hug right now, please let him go."  And I realized again--I have a special needs child.

We left there and stopped at the store to pick up a new bike for Squirrel.  There we spent forty minutes carefully making our way through the store when the errand should have taken ten.  But successful trips to the store for us involve allowing each child to touch and feel and look at and examine whatever they feel they need to touch, feel, look at or examine.  It requires that we move along carefully so that Munchkin has time to react to each noise, since he hears them all and is trying to sort them out and make sense of them.  It means fielding seventy-five requests from Munchkin to look at the Hotwheels aisle, and then waiting until he's had his fill of looking before moving on.  To skip any of these steps will ensure a meltdown.  And as I longingly wished that this errand could have been done later, without any children in tow, I had to acknowledge again--I have special needs children.

Finally, we ended up at swim lessons right before dinner.  Although it was a beautiful, warm sunny day, it was also pouring down rain for most of the hour of swimming.  (Very strange weather!)  So I reassured Squirrel twenty times that it was safe to swim in the rain as long as there was no lightening.  To no avail--she stayed anxious and couldn't wait to be done.  And I knew it again.

But what really made this message hit home on Friday occurred while I watched the kids swim.  There was a mom with a child not much younger than Munchkin--maybe four or five.  He caught my eye because of the swim diaper sticking above his swim trunks as his mom coaxed him to jump in.  I watched as he threw his hands over his ears when the lifeguard blew his whistle, and I saw him jump back when another child swam into him on accident.  I watched him freak out when it started to rain and hide under the chair until he was ready to come out.  I watched his mom pull double duty trying to give her other children the attention they wanted as they played in the pool and still keep an eye on her little boy.  I saw her panic when she couldn't see him for a minute, then relax when she realized he had run over to the sand area.  And I knew this little boy was just like Munchkin, and that was us just a year ago.

Then I thought, that's still us!  We've just become more comfortable in our roles.  Whatever each day brings, I do have children with special needs.  We are indeed a part of the special needs community.  And I embrace our place.  I'm proud of my children.  I'm proud to be able to advocate for them and for others in their situations.  And I'm proud to be part of such an amazing, special group of parents as those who have children with special needs.

Sunday, August 7, 2011

Roller Coasters and Rides: No, Real Ones! Not Metaphorical Ones!!

We took the kids to Six Flags Great America this week, because they both had tickets from the Reading program at school.  I wasn't sure how it would go.  I mean, crowds, heat, lines, high intensity rides, exhaustion, endless walking--doesn't really seem like a recipe for a good time where my kids are concerned.  Or for me either, for that matter.  But they were excited, and Daddy and I were committed, so off we went.

I was told to get the Special Needs pass for Munchkin.  I debated whether we'd really need it.  I mean, how long could the lines for the kiddy rides be?  Surely he could handle them?  I don't know what I was thinking.  Thank goodness the voice of reason (my hubby) spoke up and said to get it.  It was, quite literally, what made our day so enjoyable.

So, how does it work, you ask.  He got a pass with his name on it, and the number of people in his party written on it.  So when he wanted to get on a ride, we walked up to the exit instead of standing in line.  For the busier rides (the coasters mostly), they wrote in a return time based on the wait time for those standing in line.  So if the wait time was one hour, we still had to wait one hour to ride.  But we were free to leave and come back at our assigned time.  For the kiddy rides, though, they put us on within one or two rides after walking up to the exit.

At first, I felt guilty using it.  I mean, we were skipping the 20 minute wait for the bumper cars or the spinning ride.  We were getting on when all these little kids were waiting in the line still.  We were going ahead of kids who had been waiting patiently.  I felt bad.  I thought, "Everyone's looking at us wondering which one of us has something wrong with us."  Especially since no one can tell that Munchkin has any kind of disability when looking at him.  Or, as we waited with people in wheelchairs, or a little blind boy on one ride, or the child with the "obvious" autism, I felt like an impostor.  But after awhile, I quit caring what anyone thought.  I mean, by waiting at the exit, Munchkin was able to spin in circles and race up and down the exit ramp, instead of standing shoulder to shoulder with other people in lines.  He was able to cover his ears when the horn blew to start the ride without anyone looking at him funny.  He could watch the ride a few times before deciding to ride it, without any pressure to hurry up and get on.  And for the bigger rides, we could walk around, get a snack, ride something else, or people watch in the shade while we waited for an hour for the ride.  Sure beats standing packed into lines, sweating and smelling other people's sweat, hearing everyone else's conversations, watching the teeny-boppers make out in line.

(I enjoyed it too, can you tell?  In fact, my hubby commented that he doesn't know how he can ever go to Great America with the high school youth group again, if it means he has to wait in lines!  Yeah, we all benefited from the pass...)

Not only that, but had he been required to stand in a line for even 20 minutes, we would have been exhausted from holding on to him for that time, so that he didn't hit anyone, run off, or just bump into everyone.  He would have had a serious meltdown by the second or third ride, and we would have had to leave, or take turns holding him while the other parent took Squirrel on the rides.  He, and we, would have been miserable.

We decided not to get a pass for Squirrel.  I'm not sure we made the right call.  When she and I went on a roller coaster that Munchkin was too small for, we had to wait in line for 75 minutes.  She kept asking why we couldn't use the pass.  I told her it was because she didn't have trouble being in lines like Munchkin.  She doesn't get overheated as easily as him, she doesn't have meltdowns when she's overwhelmed by other people, and she's able to be still where he is not.  But I'm not sure I made the right call.  Because she does have trouble with crowds--she gets agitated when people get too close to her--so the line we waited in was torture for her.  She chewed her clothes (which she only does when she's stressed) and left big gaps between her and the person in front of her so she could have some space.  She stood on the bars between the aisles because it made her feel less crowded if she could see over the adults around her.  Towards the end of the wait, she curled up in a ball and started picking at the dirt on the ground--which she also does when she's stressed.  She refused to talk to me after about 30 minutes in line--she needed to reserve her energy to deal with the negative sensory input on her body.  It was obviously very stressful for her.  She was fine once we got on the ride, so it didn't ruin her day.  But she did choose not to ride anything else that Munchkin couldn't ride, so that she wouldn't have to wait in line.

All in all, we had an awesome day.  Both kids rode their first roller coasters, including the Demon, which has loops and corkscrew turns and is really fast.  (Remember what I said about Fearless?  Yeah, once again, my kids proved it!)  They loved it and can't wait to go back next year.  And we all enjoyed the family time and a really great day, thanks to that pass!  Without it, we wouldn't have made it more than an hour or two.  Maybe when they get older, we won't need the pass.  But if we do, we'll use it without caring what anyone thinks.

Just one more little side observation:  Hubby commented on how they gave us a pass without asking any questions.  They didn't ask why we needed it, or what accommodations we would need...they just wrote Munchkins name on it and explained how to use it.  We decided that this was probably because there is no politically correct way to ask, "What's your disability?"  But I think it's also because the park realizes what many people don't--that not all disabilities are something you can see.  They gave us a guide to the park that was really cool--it broke down each ride by not only physical limitations, but also emotional/psychological ones--fear of heights, high anxiety, claustrophobia, fear of dark, etc.  To me, it was a hopeful sign that people are starting to "get it" when it comes to kids with hidden disabilities!

Friday, August 5, 2011

Six Things For Six Years--A Birthday Post for Munchkin

Six years ago today we were blessed with our Munchkin.  After four days of on-and-off labor; after several false "this is it" moments; after four days of no-sleep and contractions that ranged from annoying to downright painful, I was given a mild sedative and the instructions to go get a good night's sleep and come back in the morning to be induced.

And that's exactly what I did.  And four days after he was scheduled to make his debut, Munchkin finally joined the world outside my womb.

So today, in honor of his sixth birthday in this world, I present to you my "Six Things I Love About Munchkin" list.  Sure, there's many more than six, but these ones are my absolute favorite things about my little boy.

  1. HIS SONGS.  In fact, if I was more talented, a fitting tribute would be to set this to music of my own making and sing my list.  I love the way Munchkin sings.  He can hear a song once and memorize it.  Of course, his songs of choice were from Thomas movies for a long time, but he's branching out now.  When he plays by himself, he's either narrating his play, or singing a song.  (In fact, right now he's playing with Action Links and humming the Smurf theme.)  He often sings one octave higher than the rest of the world--but perfectly in pitch!  It's hilarious and lovely at the same time.  This year his language and imagination have both grown enough for him to start making up his own songs.  And so he sets his requests, his refusals, his thoughts about his family, his thoughts in general to music now.  (Such as the other day, when I said No, we can't stop for ice cream on the way home.  And was then entertained for the twenty minute car ride with a lovely number about his love for ice cream, his favorite flavors, and his lack of understanding as to why mom won't get him ice cream when he wants it.  It was gorgeous.)
  2. HIS GIGGLE.  Have you heard this boy laugh?  Not that fake "heh-heh" thing he does.  No, that makes me nuts.  No, I'm talking about his real laugh.  It comes straight from his heart and literally explodes out of his mouth.  He has made me forget why I'm mad at him more than once with that laugh.  He's made me smile when I'm tired and laugh along with him.  You can't hear him laugh without joining in!  It's the most beautiful sound in the world, and you don't even have to work to solicit a laugh--he laughs all the time!
  3. HIS LACK OF RESERVATION.  Sure, it's a little unnerving when he talks to perfect strangers everywhere we go.  And I have to keep a super-close eye on him because he will walk off on a whim and be lost before I blink.  But I love the way he just wants to interact with every part of his world.  I love his friendliness, his curiosity, his self-confidence.  And he can sure charm the ladies!
  4. HIS HUGS.  You have not had a hug until you've had a Munchkin hug.  He grabs you around the neck, wraps his legs around your waist, and hugs with his whole body.  Long, tight squeezes with these happy little "mmmmm" sounds involved (from both of us!)  His hugs fill his sensory needs on a practical level, but they also fill us both with love and happiness.  If  there was a way to bottle that feeling you get when he hugs you, I would carry it around with me for the times we're apart--he makes me feel that good with his hugs. And it's not just me--he gives them freely to everyone he loves!   He usually follows his hugs with a kiss.  We used to have a ritual--a kiss on each cheek, one on the forehead, one on the chin, and one on the nose.  First me, then him.  Now it's just a kiss on the nose.  I love hugs and kisses from my guy!
  5. HIS MIND.  He is a thinker.  He wants to know how everything works.  He wants to know why things happen.  He asks a million and ten questions a day.  He never stops talking.  And yes, it makes me absolutely batty at times, but I am a teacher at heart and I love teaching my boy.  He is smart--really smart--and his physical and verbal limitations don't always allow people to see that.  But I see his mind at work everyday and I am amazed that my child is probably going to be smarter than I ever was!
  6. HIS JOYFUL HEART.  Seriously, the child is always happy.  Even when he's tired, or cranky, or sick--he bounces right back from it and reclaims his true nature.  He has a huge smile that lights up the room.  His eyes are usually twinkling with excitement or mischief.  He jumps, runs, hops, skips, crashes, and tumbles his way around the world with so much energy and life.  He loves everyone and everything unconditionally and is quick to forgive and forget hurts against him.  He is honest and obedient and generous and kind.  He is a beautiful child, inside and out.
There it is.  Six things for my six-year-old.  I love my Munchkin with my whole heart and thank God for him every single day.  He has changed my life forever and taught me so much about myself.  God knew what He was doing when He created this little boy just as he is, and placed him with us.  I think ahead to the next six years, and then the next, and the next, and I have no idea what they will hold.  But I look forward to finding out!


Thursday, August 4, 2011

Choosing Wise Words: Advice from Judge Judy

Being at home has led me to watching way more daytime TV than I care to admit to.  But sometimes I stumble across something worthwhile, which makes me feel a little better about my viewing choices.  Judge Judy is one of those shows.  And I can watch it with the kids in the room, because Judge Judy says innocent things like, "You, Sir, are a nincompoop," which makes Seth laugh hysterically and walk around repeating that line for the rest of the day.

Yesterday I was watching Judge Judy while I folded the ten million loads of laundry that I finally got around to folding.  She had your typical deadbeats and dummies on, then the soundbite for the next segment played before the commercial.  It had a young mother saying, "Ma'am, my son is severely autistic," with the equally young dad interrupting her to say, "Judge, she always says that but I just don't buy it."  My interest was piqued. 

During the commercial, my mind raced back to those days before and immediately after Munchkin's diagnosis.  As I sat remembering, the show came back on and I watched the drama unfold, laundry forgotten in my lap.

The case was about dental bills that dad refused to pay for a five-year-old boy.  As Judy berated mom for letting her child's teeth rot to the point that he needed thousands of dollars worth of dental work, mom interjected with the fact that her son was autistic, and dad argued with his point.  And I thought, "Oh, that poor mom!  She's going through so much, and dad is such a jerk!"  Then Judge Judy starts into mom...

"Why do you say he's severely autistic?"  Well, I had him tested.  "Do you have a copy of the test results?"  Yes, right here...  (As she looks them over...)  "Does he speak?  Is he verbal?"  Well, yes.  "Does he dress himself?  Feed himself?"  Well, he needs a little help dressing.  "Does he make eye contact?  Show affection?"  Yes, but...  "Is he in school?  Where does he go to school?"  Dad speaks up: "He goes to the public school.  He's in a regular kindergarten class.  He's extremely intelligent and doing fine there."  Mom says, "Well, he has an aide."  Judge Judy yells, "Well lots of kids have an aide!  That doesn't make him severely autistic!"

Now, at the start of all this, my heart was going out to the sobbing mother.  She explained how he was just diagnosed, but she's always known something was different about her son.  She said that dad is in denial and won't support her or him.  That he fights her about therapy and all that.  I was remembering when Munchkin was first diagnosed, and my hubby was less than on board (though not at all to the extreme of this deadbeat dad!)  But as Judge Judy continued to question her, I immediately saw where this was going--this was not a "severely autistic" child and mom was clearly trying to either, a: paint him in that light to better win her case, or b: come to terms with her child's diagnosis and taking the extreme view.

Yeah, I related to this too.  When Munchkin received his diagnosis of PDD-nos, I immediately (after consulting Google) went through a "God help me, my child has autism" period.  I convinced myself that all my hopes and dreams for this child were out the window, down the drain, over the moon...He would obviously never work, never get married, and live with us until we died and left him with no one to care for him.  Luckily, that period was short-lived, because anyone who knows Munchkin will tell you that this is the furthest thing from the truth!  This kid is going to do amazing things with his life, not in spite of his differing abilities, but more likely because of them!!!

Back to Judy.  She consulted the diagnostic papers in front of her and said what I was yelling at the TV by now, "Ma'am, it says her your child's diagnosis is PDD-nos."  Yes, that's on the autism spectrum.  "I know it is!  But that's not severely autistic!"  (Mom crying openly now.)  But everything is so hard for him!  And dad won't support me!

Then Judge Judy said something very profound.  I hope the mom was really listening, because it will make all the difference in how she takes the rest of her journey with her son.  She said, (and I paraphrase,)

"You need to be careful with your words.  Especially when describing your son.  Lots of kids with this diagnosis outgrow their symptoms by eight or nine years old.  What you are told about a child at 18 months, a year, five years, is not necessarily going to follow them for life.  But your words will."

She acknowledged then that mom was in a difficult place with coming to terms with a new diagnosis, and urged her to do everything she could for her son, and not make it worse for him than it really was.  Then she told dad to step up, support mom and their son in this journey, and pay the dental bills.  (Cheers!!!)

I don't know what the next case was about, because I was still thinking about this one as I continued to fold laundry.  As always, Judge Judy said what needed to be said without mincing words.  I wish someone had been so bold with me, but I did come to the same conclusion on my own, so I guess it's all just part of the grieving process and works out in the end.

I think her advice is Pure Genius.  The labels we assign to our kids will follow them for life.  The emotion we put behind those labels will follow them.  The shame or pride we put behind those labels will follow them.  With special needs children, it's so easy to become fatalistic in our thinking.  And I don't think it's just a one-time thing you go through in the early stages of coming to terms with their diagnosis.  No, I think it continues to pop up in our thinking at different stages of their life.

My child is going to be the victim of bullies.  It's inevitable.  He'll never have any friends.
My child will never learn to drive.  He'll be the only one who doesn't get his license.
No one will ever want to date my child.  She'll never go to the prom.
I'll never get grandkids.  My child will never grow up and get married and have kids.

Maybe it's true for some people.  I know children who really will never drive, or date, or have kids.  Their parents, perhaps, are justified in feeling fatalistic and defeated.  (Though most of them don't.  Most of them consider it a privilege to have been given this special child to love and care for until God calls them or the child home.  These are my heroes.)  But I can't be negative in my thoughts.  Munchkin will always be a little quirky.  But I can't limit him by his quirks.  His diagnosis is not a sentence handed down by the Judge.  There's no limit to what he can accomplish!

No, I will choose my words carefully.  My boy is nothing short of amazing.  That's the best word I can choose for him!  He's amazing.  A miracle.  My boy.