Wednesday, October 31, 2012

Intolerance and the Special Needs Bus

It's 6:45 AM on any given school day.  We're standing in our driveway, my boy in my arms as always, a Thomas backpack slung over his diminutive shoulders.  He's staring at his timer with the weight of the world and it's worries far from his conscious.

He hears it coming down the street.  I see his hands begin to flutter as his lips struggle to release the word on the tip of his tongue.  "B-b-b-b-us!  Bus!" he says with the enthusiasm that can only be unleashed in the form of a very young child.  I take the timer from his hands and place it on the trunk of my car just inside the garage.  I put him on the ground and take his lunchbox - a matching Thomas number - in one hand and my baby's small hand in the other.  We walk that walk to the end of the driveway to meet the bus and the inevitable heartache I feel each day seeing my 3-year old's tiny head just above a school bus window, far too young to be in the world of the "big kids".

I heave my boy's tiny frame up each step - stairs designed not for children as small as he.  I hand-over-hand hold his hand fixed to the railing to keep him balanced.  His bus driver waits at the top to guide him back towards his seat and strap him in.  I wait and watch, looking at my baby as he leaves the safety of my grasp for the bus each morning.

That's when I see it - the cars whip around the side of the bus.  There is a STOP sign there.  Our neighborhood also forms a giant loop and - with us living towards the very back - they could just as easily go one way as the other.  Instead of turning around, they whip around the school bus like it is no big deal.  Like waiting a few minutes for my boy to get on the bus and get buckled into his seat is more than they can bear.

Now, Jack isn't on a lift bus, which tends to alert people more to the fact that they are seeing a special needs bus, so I don't expect people to just infer it.  However, this isn't a special needs thing.  It's a matter of decency.  You don't run a stop sign at a school bus stop.  It's dark outside and how do they know that there isn't a child running from across the street to get on the bus?

Normally, that's the extent of it - people swerving around the bus, too impatient to wait for my boy to get secured in his seat - but then came the day where someone rolled down their window.  She poked her head out, obviously annoyed at the wait, and asked why it took so long every morning for the bus to get going after stopping at my house.

Now, this neighbor is one that I haven't held in high regard.  I hear her yelling at her children with such anger in her voice as her children play.  I hear her annoyance with her children.  I know that children can be trying to say the least, but as a special needs mom, I also have a different perspective that doesn't allow me to fully understand the contempt with kids being typical kids.  I find it hard to find anger and annoyance in the everyday follies of a child.

I felt the anger rise in my chest.  The ignorance and lack of understanding from my neighbors had come to a head and I felt so incensed at it all.  The feeling that we are living in a world that no longer focuses on community and centers more around the individual was more than I could bear.  We're so concerned for our lives that a school bus is nothing more than an inconvenience?

As I opened my lips to speak, I paused and took a deep breath.  This is not who you are.  You are the bigger person.  You treat your neighbors better than this.  I took a second breath and responded.

"My son rides the special needs school bus.  It takes the driver a moment to strap him into his seat, but I really appreciate your patience in the meantime."

I could see the look on her face.  It registered.  The fact that I carry my boy in my arms.  That I have to help lift him onto the bus.  The fact that he is so very small.  The fact that he doesn't ride the same bus as her children, even though we share matching elementary school bumper stickers on our cars.  The fact that I have a puzzle piece wreath on my door and that we have blue exterior lighting throughout the month of April.  It clicked.  She knew.  She withdrew into her car silently.  I kept my composure, which was the best I could do.  I spoke calmly and - hopefully - helped educate someone.

I wondered for the rest of the day what she was thinking.  Did she feel remorse?  Did I care, really?  Ultimately, I just wanted her to think twice before speaking, which I hope I accomplished.  I have no idea, but if just one person shows more compassion rather than inconvenience in a similar situation, then I will have done my job as my child's first advocate.

Tuesday, October 30, 2012

The Search for Cinnamon Schoolbook Cookies

I'm over at the SPD Blogger Network today.  Have you ever gone on a mad search for one of the few foods your child will eat, but someone decided to discontinue?

Yeah, I've been there, too.  Read about my search for Cinnamon Schoolbook Cookies by clicking the link below:

http://www.spdbloggernetwork.com/2012/10/30/the-search-for-cinnamon-schoolbook-cookies/

Have a great day before Halloween and stay warm and dry out there with the storm.

Monday, October 29, 2012

True Inclusion


You don't have to feel like a waste of space
You're original, cannot be replaced
If you only knew what the future holds
After a hurricane comes a rainbow

Maybe the reason why all the doors are closed
So you could open one that leads you to the perfect road
Like a lightning bolt, your heart will blow
And when it's time, you'll know

You've just got to ignite the light and let it shine
Just own the night like the 4th of July

'Cause baby you're a firework
Come on show 'em what you're worth
Make them go oh, oh, oh
As you shoot across the sky

Baby you're a firework
Come on let your colors burst
Make 'em go oh, oh, oh
You're going to leave them falling down

Boom, boom, boom
Even brighter than the moon, moon, moon
It's always been inside of you, you, you
Now it's time to let it through

~ Katy Perry, Firework

---

We hear people speak of inclusion often, that children have a right to be educated with typically-developing peers to the greatest extent possible.  Now, my son has never done well with inclusion - self-contained classrooms seem to serve him better - but the right is there and often spoken about in advocacy circles.  

However, inclusion seems to always refer to school settings.  We don't speak as often of inclusion in our everyday settings - with family and friends.

This is where I feel that we fall short.  Inclusion is so much more than a spot in a classroom.  It's about more than rights and laws.  It's about acceptance.  This is where inclusion outside of the classroom becomes an issue.

Think about it.  How many autism parents speak of family members who do not understand?  How many special needs parents feel pressured into putting their children in situations in which their chances for success are low?  How many times do we as parents get pushed to bring our children to places and events in which they'll be bombarded with sensory input, in which they will need to remain still and quiet for an extended period of time, and in which they'll be surrounded by people who do not understand?

And how many of us do it?  I'm as guilty as the next person.  I feel the need to bring my child into a situation that I know - I know - will be unsuccessful for him.  Yet I do it anyway.  I do it because someone else wants me to do it and I don't want to disappoint them.  I do it because someone else doesn't understand just how much these situations bother my boy.  Then, if it's a situation that I can convince someone that he will not be able to handle, I allow other people to encourage me to leave him behind - to leave a piece of my heart, my family, behind.

Why do we do this?  We push our children into situations that make them uncomfortable.  We make them conform to a world that seems to run counter to the way that they are wired.  We do it in the name of making them more like us, more able to "adapt" to the world.

There is something to be said to giving our kids the skills to cope with challenges in their world.  It's also true that no person can truly live in isolation successfully; even the most reclusive person must manage going to the grocery store, the doctor, and other essentials for their survival.  However, in light of all of the work that our children do daily in therapies, school, and just in their everyday lives, is it not the case that we should meet them in the middle?

Unfortunately, there are many people in our lives who won't get it.  They'll say that we need to make our kids do these things, as though a trial by fire will suddenly correct neurological differences.  They will feel slighted when we choose our children over them, but should that not be the case?  Should we not serve as our children's advocates, helping to communicate to the world their needs?

In a way, I've decided that I simply won't allow myself to be swayed by those naysayers.  The people who don't get it will continue to do so until they have an epiphany, but I won't be the one to grant them that.  They have to come to their own realizations.  I can be kind, I can explain until my tongue is tired, but I cannot force someone to listen.  As such, the person I need to be most concerned about, the person who deserves my worry, focus, and attention, is my boy.

Ultimately, anyone who doesn't make accommodations, anyone who doesn't try to reach out to him, anyone who does not truly try to include him in the way that he can best be involved is simply missing out.  They are missing out on my firework - on my brilliant, shining star - who is more amazing than any of them realize.  Inclusion doesn't just mean giving my boy a place; it also means gaining so much more for his presence.  The world and everything in it is better for him being here - autism and sensory issues and everything else added in.

So I make the following resolution to my boy - there is no one more important in my life than you.  Even your father isn't "more" important; I place you both on equal footing.  You are a part of who I am.  You know me better than anyone else on Earth.  So here is my promise, my angel - we will practice true inclusion in our family.  Unless it is truly an "adult" only occasion - like a parents' night out - we will come and go as a family.  If it's a situation in which accommodations won't be made, we will sit it out as a family.  If I cannot make someone understand - and I do try, my love - I will not leave you behind. I will stay with you, because you are an important part of who I am.  The most important part of who I am.  We will always see the brilliance in you and will always be at your side assisting, guiding, and following your lead.  We no longer operate as separate pieces; we come as a package deal.  All of us.  It's you, me, and your father against the world.

And it will be.

Thursday, October 25, 2012

Dictation and Insight

I got a small taste today of my boy's world.  A small sampling of having so much to say, but being unable to get it out.  Of a mind so full but no words.

You might not realize this, but the blog post you are reading right now may have been written weeks ago.  That's how I operate.  I keep a list of post ideas on my phone and pull off of it as I go.  I post the most relevant things - the important happenings of our life - not long after they occur, but others I may have in the works for a while to come.

I've also written over 350 posts.  That's a lot of typing.

I've been watching those commercials advertising a new dictation software package that is supposed to revolutionize life for the busy mom/student/writer.  I was intrigued, but I also know my limitations.  For example, I can read this post much faster than I can type it, but my words - my thoughts - flow more fluidly when I write than when I speak.  I have read pieces by adult autistics where they describe a similar phenomenon in which they can write better than they can speak.

Still, the prospect of saving time and, perhaps, making a dent on that book I wish to write led me to covet the dictation program.  One day, as I was browsing Apps on Jack's iPad, I saw that the dictation program I was looking at on TV had a free App for the iPad and iPhone.  It was free, so I decided to give it a whirl.  If it worked, it might revolutionize the way I blog.  If it didn't, I wasn't out anything.

I sat down, iPad in hand, to dictate my first "spoken" blog piece.  I hit "record" and nothing happened.  Now, I should clarify, when I said that nothing happened, I mean that I sat there with my mouth all agape.  I knew what I wanted to write about.  I could see it in my mind.  I could not speak the words to make it come out.

I hit "stop" and waited a minute.  This is ridiculous, I thought.  I can speak to other people!  Why can't I dictate something out?

I gave it another go.  I hit "record" and resembled Raj from The Big Bang Theory.  I think I managed to get a few squeaks out, but no actual words - with the exception of a couple of obligatory curse words when I could not figure out why I could not put voice to my thoughts.

Several attempts later and I gave up.  I couldn't do it.  I simply couldn't do it.  Not only could my well thought out post not come out in a coherent manner, I couldn't even get out a friggin' sentence!  It was incredibly frustrating.

It got me to thinking, is this what Jack's life is like?  When he sees something he wants, but he can't even get out a single word to tell someone what he wants, does he feel this same frustration?

I imagine that he does.  I can see it when he parrots back a question and we offer him something - anything - trying to figure out what it is that he wanted, only to see him scream in frustration.

NO!  I didn't want that!  Why don't you understand?

That's just it.  He can't get the words out, or when they come out, they don't make sense.  He'll parrot back what he was asked instead of what he wanted.  Like me, I'm sure he knew in his mind what he wanted, but putting voice to those thoughts was something else altogether.  It makes you sympathize with the resultant meltdowns.

I put the dictation App away and I'm typing this post out as I usually would.  I know that my ability to speak my thoughts is more limited than my ability to write or type.  It also gives me hope.  Could Jack one day find a voice on the page?  Could he - as an adult - find his voice through writing in a way that spoken language might escape him?

We don't all communicate the same way, but that's okay, too.  The important thing is to figure out how to best connect.  How to get your thoughts out.  It doesn't have to be verbally.  I've found my way, through this blog.  Through my writing.  It is my wish that my boy might one day do the same, because I'm sure that he has much to tell the world.

Wednesday, October 24, 2012

Special Needs Mama Times Two

A dog is the only thing on Earth that will love you more than you love yourself.  ~ Josh Billings

---

My sweet little Mason, a sentinel guarding both my heart and my soul, lays obediently at my side.  His chin rests upon my thigh and I feel incredibly grateful that his stroke was not worse - that I was given a gift of time.

I have, however, come to realize that I am now a special needs parent to not one, but two little ones - Jack and my Mason.  Sure, Mason is aging, but there is something about being a pet parent that makes it impossible for you to see your beloved pet as a little old man.  Instead, I would like to think of him as another special needs child.

It has been somewhat difficult juggling Mason's needs with Jack's.  Since his stroke, Mason's mobility has been impaired.  He still trips a lot and his legs occasionally give way underneath him, but his ability to move around has greatly improved.  He still cannot do stairs, which has caused some logistical issues with managing both his needs with Jack's.  I now have two babies who have to be carried up and down the stairs.  Unfortunately, I have yet to master the feat of carrying them simultaneously, as that would equal about 60 pounds of child and pug.

What has been heartbreaking about Mason's decline is that he doesn't seem fully aware of his limitations.  He still attempts to play, only to find that his legs won't keep up.  He'll attempt to jump up on us, but his back legs can't support his weight.

And yet, I find that his spirit is inspiring.  He's old, but he's still got some fight in him.  He needs assistance, yet he still wants to play.

We're moving forward, embracing our new status as special needs parents to our furry baby as well.  He has carried me for so long, certainly I can carry him a little while more.

---

(Hopefully) Related Posts:

The Tao of Mason
Rescue Me
"A Heartbeat at my Feet"

Tuesday, October 23, 2012

Tasteless

I spoke at length last week about the reasons why someone shouldn't use the "R" word.  I spoke of how hurtful it is, how wrong you are to use it, and why it is just incorrect to do so.  I get that people slip, that it is so ingrained in our vernacular that sometimes people just don't think.  It doesn't make it right, but everyone makes mistakes.

That is why the following is so atrocious.  This wasn't a mistake.  This was someone who has used this word before, received backlash, and chosen to do so again because she gets publicity from it.  Granted, it's negative, but ask any parent of a NT (or SN) preschooler if their kids will take negative attention just as readily as praise.

Normally, I don't get so fired up, but today, I'm pissed.  Seriously.  Someone has gone and done it again - on purpose, in my opinion - and I am sick of my child and your child being used in this way.  I'm sick of the hurt it causes.  I'm sick of people who simply seem to lack compassion or a heart on this issue.

I don't care what side you are on - Republican, Democrat, Libertarian, or just straight up Independent - we shouldn't let our desire to support one side or the other allow us to turn our backs silently on a comment like this:

Ann Coulter (@AnnCoulter) via Twitter last night:

I highly approve of Romney's decision to be kind and gentle to the retard.

There are no words.  Seriously.  How dare she?  I don't care who you support (and as you know, I don't like to get into that here), but I have just two words to describe this.  No class.

Slinging insults at the nation's most vulnerable, the people who cannot always speak for themselves, just to get more Retweets and hits on your page is the lowest of low.  Surely, Ms. Coulter, you can think of something better to say than that.  If you want to go slinging insults around as so many political shock jockeys like yourself do, then get more creative.  Surely you can deliver your message without insulting someone else.

Without hurting someone as precious as my child.

What would I like to see come of this?  Ideally, I'd like to see you issue an apology.  I know you're not a parent, but imagine what it must feel like as a parent for someone to sling a word around as an insult that has been used in reference to your child.  I know that won't happen.  You got out of this what you wanted.

So, what I'd rather is this - I'd like Mitt Romney to condemn your remarks.  If he is who you are trying to lift up on a pillar, I'd rather for him to say that he doesn't want your support.  If her words no longer have power to draw people towards the conservative cause because the conservatives don't want her there, then suddenly our message has been received.  That you don't get to sit at the grown-ups table unless you can act in a way that is respectful to people who are different than you.  That someone like you who is supporting him with hate speech is not the kind of support he wants.  That he is against using children and adults with disabilities as an insult to be slung around so carelessly.  That he is for ALL Americans and all American families, including those who have loved ones with disabilities.

For there are many.  There are so many.

Today, let's light up social media.  Let's make it clear to Ann Coulter (her Twitter handle is @AnnCoulter) that we won't allow our children to be used in a political mud-slinging match.  Let's show them all - on both sides of the aisle - that when they throw that word around as an insult, this is who they are speaking about:


This is who they use as an insult, but whom I love with all of my heart and soul:


This is who you are referring to when you use those words - those horrible, hateful words that strike at the heart of every special needs parent.  He is better than you, Ann Coulter, a million times over:


---

Please help!  Let Ann Coulter know that this was a classless comment to make about children as precious as ours.  Clearly the work isn't done.  Read last week's post about Choosing Your Words Carefully (click --> here <--) and consider taking the pledge to End the Word by clicking --> here.  Together, let's work to make this word unacceptable for use by anyone.

Monday, October 22, 2012

What's on Jack's iPad Now?

Image Source: Project Injini
I had a reader ask about the apps we currently have on Jack's iPad, which got me to thinking - I've never really talked about Jack's iPad on my blog!  It's such an integral part of our every day lives, yet I haven't ever really talked about what is on it and what we use it for at this time.

So, here goes...

Case:  I know it's not an app, but I get asked often what kind of case we use.  We currently have a Griffin Survivor.  It fits our iPad 2 very well and with Jack's (lack of) motor skills, it has taken a tumble or two.  So far, so good!  I also love that it has a built-in screen protector.

The apps we use the most are:

Injini Child Development Suite:  This is one of the more expensive apps that we have purchased for Jack's iPad; at the time we bought it, it was $50, but worth every penny (there used to be a free demo version that you could download on the App Store, but it's worth getting the full version if your kiddo likes it).  It's a suite of mini games that is designed for children with developmental disabilities, like autism, Down Syndrome, and other developmental delays.  Each time a mini game is added - and that happens often - you get it free.  The games foster fine motor, language, and cognitive development.  The games all work on positive reinforcement - your kid can keep trying until they get it right, so there's no frustration from doing something wrong!

Jack would give this two thumbs up.  He loves the little games and I love that he's learning as he plays.

Image Source: Handhold Adaptive
Touch Trainer:  If you, like us, have a child with fine motor challenges who found it difficult to "tap" a touch screen, try this program.  Designed by a BCBA, it puts increasingly smaller touch targets on the screen until the icons are the size of typical app icons on an iPad.  For each correct touch, the app provides your child with a visual and auditory reinforcer.  This program is the reason why Jack touches his iPad rather than slaps it as he used to do.

iPrompts XL:  I think that, as a parent, one of the things I like best about the iPad is how it eliminates the need for a ton of hand cut/laminated picture cards to get lost, misplaced, and made again and again and again.  iPrompts XL is an all-in-one picture scheduler, choice board, and visual timer rolled into one.  They also have an iPhone version (iTunes cards are on my Christmas list), but the only version we have is the one on the iPad.  It has a large database of common PECS pictures, plus it allows you to take pictures and integrate them into the software.  Especially for kids like Jack who have difficulties making verbal choices and who need a lot of visual support (Jack does), this program is an easy way as a parent to provide that support.

Image Source:  Toca Boca
Toca Kitchen:  This one was a great find on the part of one of Jack's private speech therapists.  As I've mentioned over and over, feeding and anxiety/sensory issues with food are a BIG concern in our house.  Well, this game allows Jack to feed a character on screen, thus experimenting with food in a clean, safe, and low stress way.  Toca Kitchen allows your kids to chop, cook, microwave, and boil food before feeding it to a boy/girl/cat/cow (yes, cow) on screen.  For feeding kiddos, I'd highly recommend this as a safe way for kids to play with food and increase their comfort with feeding.

And...just for fun, here's what Jack enjoys playing on his iPad these days:

Monopoly:  The repetitiveness seems to soothe him.  He can "roll" the dice, the pieces go around the board in a predictable manner, and it just works for him, at least that's what his special instructor thinks. It also plays very soft, elevator music that soothes the overreactive preschooler.

Image Source: iTunes Store
Toca Train:  Yes, like every other autistic kid - it seems like so many of our kids LOVE trains - Jack loves trains.  He's never been able to play with a train set appropriately; instead, he resorts to rolling them back and forth in front of him or staring at the wheels.  Toca Train is like a train set on the iPad, except that he can't play with it any other way other than on the track - so no stimming on the wheels.  Like Monopoly, it's very predictable (the "train set" just keeps a continuous loop), but it also allows for some thinking outside of the box.  Kids can pick up passengers, stop at stations, and get cargo.  They also control how fast or slow the train goes.  It's a cute game, even if it plays into his repetitiveness and perseverative play.

Super Why!:  Of course, you couldn't expect that we wouldn't have a Super Why! game, right?  There is a mini-game for each character - Alpha Pig, Super Why, Princess Presto, and Wonder Red - and all deal with letters and words, so naturally Jack loves it.

Bubbles:  Jack loves bubbles.  Loves them.  This was a game that we got out of desperation one day because it was raining and we couldn't do bubbles outside.  He plays it sometimes, but I think that he still considers it a poor substitute for the real thing.

Fruit Ninja:  He just likes watching the fruit fall.  Word of warning - if your kids like to just watch the fruit fly into the air and fall back down, as in they don't like to actually cut the fruit, put the game in Zen Mode.  That way, the game won't end after the first couple of pieces of fruit.  And yes, sometimes it's okay to just visually stim.

Besides games, I keep some of Jack's favorite songs on the iPad - like right now he really loves Carly Rae Jepsen's "Call Me Maybe" and REO Speedwagon's "Keep on Loving You" - but he usually doesn't choose to listen to music.  I do have several episodes of Super Why! downloaded into the Videos app, just in case we get somewhere and nothing but an episode of Super Why! will do.

Otherwise, that's it.  Our selection of apps tends to change from time-to-time, but the ones listed above are the big ones.  I firmly believe that touch screen technology holds so much potential for kids on the autism spectrum.  It can serve as a wonderful medium for teaching a wide variety of skills.  It can serve to add structure, predictability, and logic to a world that seems anything but to our kids.  It provides them with a motivating reinforcer and a way to unwind.

Most importantly, it gives our kids a voice.  Our kids tend to be so visual, so even kids who have some speech still benefit from the iPad's ability to integrate so many aspects of life into a form that is easy for them to understand and process - a visual image.  With Jack, I've seen him able to make a choice on the choice board that he simply cannot do verbally.  That is the power of this technology - to give our kids a voice.

I'll open it up - what apps have you found that help your child?  Please share and provide links, if possible.


Sunday, October 21, 2012

Red

I'm over at Hopeful Parents today!  Please pop over there and read about those blissful stolen moments with our children - and if you'd leave a comment, I'd be much obliged!

Check out my post - Red - by clicking the link below:

http://www.hopefulparents.org/2012/10/red.html

Have a fantastic weekend, my friends!

Friday, October 19, 2012

What Is My Autistic Preschooler Doing Now (18 months post-diagnosis)?

It's been a year and a half since Jack was diagnosed.  A year and a half.

It seems like it's been forever since we've started down this road, and in a way it is.  Jack's always had delays so that's nothing new, but adding a name to it seems to change things.  It gives it a finality and a permanence that was - in reality - there all along, but is made more real with the name.

It also seems like we are light-years away from where we were.  I like to look retrospectively every six months to see just how far we've come.  A year and a half later, here is where we are and where we're going:

Jack's Therapeutic Program:

When Jack was diagnosed, he was getting the following -

  • 1 hour of speech/feeding weekly
  • 1 hour of OT weekly
  • 1 hour of special instruction weekly
  • 1 hour of Gymboree weekly
Before his diagnosis, we attempted to enroll Jack in preschool, but we were told by the typical preschools that they could not meet his needs.

Now, a year and a half later, Jack is getting - 
  • 2 - 1 hour sessions of speech/feeding weekly
  • 2 - 1 hour sessions of OT weekly
  • 1 hour of aquatic PT weekly
  • 1 hour of special instruction weekly
  • 1 hour of special needs play/social skills group weekly
  • 1 hour of special needs music class weekly
  • 3 hours a day of special needs pre-K - plus through school - 
    • 2 - 30 minute sessions of speech weekly
    • 2 - 30 minute sessions of OT weekly
    • 30 minutes of PT weekly
So, we've increased Jack's therapy load quite a bit, but I think that the increased intensity has really helped Jack overall and helps maintain the consistency he needs to progress.

Speech/Language:

When Jack was diagnosed, he had the communicative abilities of a 7-month old.  He was non-verbal.  He was using no gestures, words, or sounds to get his needs met.  We were unsure what - if anything - Jack could understand.

Now, Jack's testing at an overall level of an 18-20 month old in terms of communication skills.  Echolalia and scripting have been the name of the speech game for some time now, with it comprising about 80-90% of what he says around the house.  In terms of spontaneous speech, Jack has tons of labels; he knows what a lot of objects are called and just this summer began to spontaneously label them.  In the past month, his new favorite word is "No!"  He's gotten to where he is much better with greetings.  He can say "Hi/Bye _____" with pretty good accuracy, though he still needs prompting and occasionally he'll say "Hi Jack" instead of the other person's name.  He can say just a few spontaneous two-word phrases, primarily ones with "more" or "all done" plus a noun.  He still doesn't use verbs expressively or pronouns, nor does he ask questions.  He knows our names (Mommy and Daddy), Mason's name, the names of his therapists and teachers, plus the names of a couple of extended family members (his Grandma, Grandpa, and one of his uncles).

Jack started pointing at the start of the summer.  He doesn't point to show interest or request objects - only in response to a question of "Where's _____?"  He doesn't yet wave, but he will clap with prompting.

Receptively, Jack's showing us that he understands more.  He is starting to follow some very simple 1-step commands, but he usually needs us to break down multi-step commands into individual steps, for example we'll tell him "get shoes" then once he's done that we'll say "sit on couch" instead of "get your shoes and sit on the couch".

Clearly we've got a very long way to go, he's come so far already.

Feeding:

When Jack was diagnosed, he was still eating mainly purees.  He was also vomiting multiple times daily.  Foods with any texture would make him gag.  I refer to that period in our lives as the "Dark Days".

Now, feeding is still a significant challenge, but he's made lots of progress.  Purees make up a much lower percentage of his diet.  Now, his main foods are cereal bars, yogurt, French toast, waffles, peanut butter and jelly sandwiches, grilled cheese sandwiches, pretzel rods, alphabet cookies, and Cheerios.  Occasionally, he'll eat pizza.  He only drinks milk.  Other foods cause a lot of anxiety.  He recently added a new food - Goldfish crackers - which was a victory!

He still struggles a lot with coordinating his swallowing and chewing.  Jack still can't eat independently.  He needs prompting and assistance with each meal.  He needs to have oral stimulation before and during meals to help keep him from pocketing.  If he pockets, we have to massage his cheeks and help him clear that food and swallow it.  We've had a lot of problems with Jack pocketing food in his cheeks, which seems to ebb and wane over time.  We've had several choking incidents because of Jack's pocketing and tendency to overstuff his mouth.

It's a work in progress, but I'm confident that we'll continue to see growth in this area, slow as it may seem at times.

Other Adaptive Skills:

Jack can take off his shoes and socks.  He can put his Velcro shoes on with a little prompting and assistance.  He can't take off or put on any other clothing, including his diaper (a good thing, in my opinion).

Jack still has very few self-care skills.  He will occasionally put his comb to his head with prompting.  We still have to wash his hands, brush his teeth, and comb his hair.  We also still have to help him eat or feed him when he struggles with utensils.

Jack is still in diapers.  We're working on him being able to have awareness of the need for a diaper change.  We see minimal awareness when he has a BM, but none with wet.  Even with BMs, he doesn't always say something or if he does, he says it to himself and doesn't alert anyone to it.  We usually have to look for the tell-tale signs that he has gone - like walking funny or a grimace - to know he's gone.  That's not always a guarantee.

We're working on Jack being able to simply sit on the potty for a few moments.  We've been able to lure him up there by counting (he loves numbers these days).  Right now, we're going just for comfort on the potty and being able to sit up there for longer than 10 seconds.  We're taking our time so as not to freak Jack out during the process.  We don't want him to shut down like he has in the past.

Fine and Gross Motor:

When Jack was diagnosed, he wasn't able to self-feed at all.  He couldn't scribble and his hands were very weak.  He couldn't jump or climb stairs.  He had not met a motor milestone past walking/running.  He struggled greatly with motor planning.

Now, motor planning is still a huge challenge with fine, gross, and oral-motor tasks.  He does better with motor planning when the task is familiar.  He just started jumping and it's definitely a work in progress, but one which he loves and seems motivated by.  Stairs are still a big challenge for him and he seems to fatigue going up the stairs in our house.  Going down stairs is very difficult for him.  

Fine motor presents the bigger challenge.  Jack can now scribble, but his strength in his hands is so weak that his scribbles are very light.  He needs to be prompted to scribble and he still can't produce markings beyond back-and-forth lines.  Anything fine motor is NOT a preferred activity - just ask his therapists who get to hear his screams.  I'm guessing he won't be a budding artist anytime soon.  :)

Social:

When Jack was diagnosed, he was not aware of other children at all.  He didn't notice them.  He struggled with eye contact and was very self-absorbed.  He didn't respond to his name at all.

Now, social skills are still a significant challenge, but we're making gains.  He's gotten to where he can do greetings to familiar adults pretty easily if he hears some kind of prompt (they say "hi" first).  He can spontaneously greet familiar adults but not unfamiliar ones, but still needs prompting to do it most of the time (or to say the right name occasionally, he still tends at times to parrot back their greeting with "Hi, Jack!").

His eye contact has greatly improved.  Jack won't look at you for more than a few seconds - you might call it fleeting eye contact - but it happens and is much better than it ever was.  We find that sensory activities - jumping, sliding, swinging - help with this.

Self-absorption still occurs.  He still has a tendency to get an object and get "lost" in it.  I'm not sure we'll ever see this go away, as it may just be Jack's way of dealing with the stress of his world.

Peer-to-peer interactions are his biggest challenge.  The good news is that Jack's awareness has increased.  He seems curious of what other children are doing, sometimes in an anxious way, but more often than not just because he's curious.  He doesn't care to join in with the other children, though.  He's emerging in parallel play - meaning he'll play near a peer if they're both set up with a similar activity - but there are times when even parallel play is too much of a challenge, like with fine motor activities.  He has been yet to be observed to imitate the verbal or motor behavior of a peer, which is a critical skill for success with parallel play.

There was one time recently - one - in which he spoke another word to a child at therapy because that child was engaged in a very motivating activity for Jack (bubbles, which was what he said).  He has spontaneously said "Hi, ____!" to that same child twice.  This is a child that is frequently at therapy at the same time as Jack and is often used as a peer model and for work on peer interaction.  This in in a 1:1 setting with tons of sensory work first in a controlled environment and is so rare (only 3 times ever speaking to a peer that are so precious to this mama!) that we don't even consider it really an "emerging" skill yet.  We've seen it with no one else and in no other setting.  This other child has special needs, but seems very in-tune to what Jack needs in his environment and goes out of his way to make Jack feel comfortable.  As a result, Jack feels very comfortable around this little boy, even if they don't play and interact much.  I consider this to be the HUGE victory - staying comfortable and regulated around a peer.

For actual interaction to take place, Jack needs a lot of facilitation.  He needs a 1:1 assistant or therapist to prompt him to speak, look, and act.  He won't initiate interaction on his own.  This has been one of our biggest issues with school, because every day when I pick him up he is off on his own.  The other boys are running or riding bikes, while Jack is either sliding (one of his favorite activities) or opening and closing the doors to the Little Tikes house or grill.  It breaks my heart that he's alone and no one is helping him.  We're not sure what it will take to get someone to facilitate him at school, because right now he can't do it on his own.

Emotionally, Jack seems to lack awareness of the emotions of others.  If I cry (and it's been known to happen), he won't comfort me as a typical child his age will.  He understands receptively that crying is the action of crying and the sound it produces, but he doesn't equate it to pain.  He isn't affectionate, though he will move his face towards you if you prompt for a kiss (oral-motor problems prevent him from puckering his lips) or will stand still for a hug (won't reciprocate).  He will say "Love you" if prompted verbally, but he has never just come up to me to initiate saying "I love you".

We anticipate social skills, like speech and pragmatics, will be something we are always working on.  It will forever be a work in progress.

Joint Attention

I only mention this as a separate category because it's one that parents ask about a lot.  Does my child have joint attention or doesn't he/she?

So, what is joint attention?  In my non-professional nutshell, it is when someone draws your attention to an object through looking, pointing, or other non-verbal (or verbal) means.  It is someone wanting to share interest in an object with you.

Jack's joint attention is weak.  The obvious things we notice are that he doesn't follow a point well (though with tons of work with his special instructor, it's improving), nor does he look at what you're looking at (called "eye gaze").  It presents challenges when we're trying to alert Jack's attention to an object, like a dropped toy or something he might find interesting.  We have to point and then manipulate his head to look in the direction of the point.  It makes it hard to work on vocabulary (prompting with "What's that?" questions) when he won't look at what you're pointing to or looking at.

In terms of Jack initiating joint attention, that's not happening yet.  He can point when prompted with a "Where's ____?" question, but he doesn't point to indicate wanting an object or to draw attention to it.  So, he doesn't point at a car that goes by when it interests him.  Those of you with NT kids, think about it.  When your child sees something of interest, they point to it and look back at you to see if you're watching.  Even if they're non-verbal, they've indicated interest.  That's joint attention.  Again, a lack of it is kind of a key feature of autism - not sharing enjoyment in the world around you with others.

Jack also doesn't say "Look!" when he sees something of interest.  I've heard that these skills usually come much later with kids with autism, so we're patiently waiting.

Sensory Issues

I think that Jack's sensory issues haven't so much changed, just evolved.  He still really struggles with transitioning and breaking routine.  He has a lot of anxiety.  His anxiety involves tactile issues, auditory sensitivity, and anxiety with feeding.  All we can do is try to manage these sensitivities while trying to slowly introduce the stimuli to "desensitize" him when we can.

He also hates lights being on.  I think that he'd live in darkness if we'd allow it.

On the other hand, Jack is very underreactive to certain stimuli.  He doesn't get dizzy easily.  He can swing, spin, and get dropped onto surfaces all day long.  In fact, Jack craves pressure.  This may seem strange for a child that doesn't really like to be touched, but he loves pressure.  He wants to be squeezed, compressed, or dropped onto a crash pad.  One of the ways to really help him calm down is using joint compressions/brushing (called the Wilbarger protocol) or by putting a weighted toy on him or a compression vest/garment.  Pressure helps calm his system down.

Perseveration

Ah, stimming.  Jack wasn't as big of a stimmer in the obvious way when he was diagnosed, which is why many people have suggested that he probably was diagnosed as PDD-NOS at 24 months when he presents now as being more like "classic" autism.  When he was diagnosed, he would fixate on trains, running them back and forth in front of his eyes.  He also would cut his eyes to the side while pacing.  Both are forms of visual stimulation.  He also loved to stare at spinning objects like tops or fans, or anything else he could spin.

Now, Jack does more of the traditional stimming - hand-flapping, toe-walking (though not exclusively), and spinning himself in circles, plus most of what he used to do, minus the trains (not a favorite anymore).

Jack's current fixation is still letters and has been for over a year.  He also has come to like numbers, I imagine for similar reasons as the letters.  As a result of the new love of numbers, he fixates on timers and the timer on the microwave.  He loves to watch them.

Play Skills

Functional play and play skills are still a weak area for Jack.  His tendency is towards non-functional or cause and effect play.  He'll open and close doors on a play house instead of playing with it.  He'll drop or bang an object on a surface instead of using it functionally.  He'll arrange letters in strange patterns.  He has a house full of toys that he rarely plays with.

He still isn't doing any pretend play, though he can be prompted to do a simple pretend play action, like feed a doll.  He needs a model to follow in these situations.  He doesn't initiate this at all and needs to have facilitation for appropriate play.

Like I said before, he tends to fixate on non-toy objects, like his timer.  He also would far prefer his iPad to a person any day.

School/Learning

Jack has been described as what you would call a Gestalt learner.  He learns things in chunks.  Someone once described it to me in this way - his words are in Duplo, or big, pre-made chunks.  The rest of the world learns in Lego, or small, moveable pieces.  So, he learns in chunks, like learning a scripted phrase like "Go play!", but he can't use the individual components of that phrase - "go" and "play" - to form a new phrase, like "play letters" or "go car".  This can help explain why it's been such a challenge to move into meaningful, spontaneous 2-word phrases.

Jack does not have savant skills, but he has areas of very uneven cognitive ability.  He has significant cognitive delays, though we have been unable to get good cognitive testing done due to Jack's language and attention issues.  For example, his perceptual processing of things like hidden toys is very weak (you hide a toy under a cup, move the cup, and it's basically gone to him).  However, he knows all of his letters (along with phonemic sounds they produce) and the numbers 1-10 (and a lot beyond that), plus he can read a digital clock.  He memorizes words from Super Why! and can spell them with magnetic letters, but only in the order that they do it on Super Why! and with no other words except for ones seen on there.  He has an incredible memory, I'd say bordering on eidetic.

Unfortunately, he has no understanding of any of this, nor does he know how to use it.  He can read a clock, but he doesn't know what "time" is or those numbers mean.  While he knows his numbers, he can't "count" how many of a certain object is placed before him.  Comprehension is a huge problem for him in so many areas.  He can recite many things, but he doesn't know what it means. This is what is known as splintered development, and it's very common with kids on the spectrum.

Also like many kids on the spectrum, he is a very visual learner.  He requires extensive visuals and picture schedules to understand sequencing and multi-step tasks, like the layout of his school day.  Some of his best learning actually occurs via his iPad, which contains several programs designed for children with developmental disabilities.

Jack has a hard time attending to task due to his sensory issues.  His anxiety also comes into play at school, too.  We see him get overwhelmed and self-absorb a lot at school.

These differences in learning make a good special education program critical for Jack's success.  Mainstream scenarios have never worked in the past for Jack, but it's because he needs an environment tailored to his needs and learning style.  We'll probably always be on the hunt for the perfect learning environment for Jack.

---

So, that's it.  That's where we are.  As you can see, we've come a very long way and we still have a very long way to go.  We've resigned to the fact that progress is a dynamic term, constantly changing and redefining itself.  We are so incredibly proud of our boy, what he has done, how hard he has worked, and where he is going.  Our definitions of progress, success, and the future have changed, but we couldn't be prouder of him, regardless of the destination.

He is, and will continue to be, our inspiration.  Our reason to fight.  Our heart.

So Far

There are dates that stick out in your mind.  Your birthday.  Your wedding day.  The birthdays of your children.  For many of us special needs parents, another date will inadvertently stick out from now until...well...at least the not too distant future.  I'm talking, of course, of the day we first heard those words - our child's diagnosis.  In our house, I refer to it as "Diagnosis Day" - not exactly a day to celebrate by any means, but a day of reflection on where we've come and where we're going.

This month rings around 18 months since Diagnosis Day.  I had a post all ready to go that was highlighting Jack's current functional status right now or his PLOP, for those of you entrenched in the IEP process at the moment.  Yet, every time I've gone to hit "Publish", I can't help but think that regardless on how much emphasis gets placed on the progress made - or not made - on that list, those levels of performance miss the point.

You might look at my child and see a funky grasp, a weak pincer grasp, or single words with a smattering of two-word phrases, but you'd be missing him.  So, I'm not going to emphasize that.

Not that it's not important.  Not that he hasn't made loads of progress in many areas.  Not that we don't have a long way yet to go.  It still misses HIM.  Who he is.  What he's done.

You see, there is so much about my boy that makes him the greatest person on Earth.

He is the only person who I have ever loved before he even existed.  He's that awesome that I loved just the idea of him.  We were expecting a rough, long wait when we decided to start trying to have a baby, so he defied us all by showing up as a positive pregnancy test that first month!

Then, when I had a sub-chorionic hemorrhage at 9 weeks, I thought that we surely lost him.  I was devastated.  I went to the midwife expecting the worst.  They did an ultrasound to confirm what we all thought was a certainty.  To our astonishment there he was, fluttering and kicking and pumping his little arms in the air.  The hemorrhage - while bad enough to put me on rest for 2 weeks - was nowhere near him and posed him no direct threat.  He was already a fighter and defying the odds once again.

At 16 weeks, my genetic testing came back saying that I was a carrier of Cystic Fibrosis.  Suddenly, the cards were stacked against him once again as his chances of being born with CF skyrocketed.  We waited 4 long weeks for genetic testing on my husband to come back negative.  Of course, I was cautioned that "negative" only meant "negative for the most common mutations causing CF" and that there was still a chance that he could be born with the disease.  When he was born, all CF testing came back negative.  He had defied the odds once again.

I started having pre-term labor contractions at 32 weeks.  They put me on medication to stop my contractions - and it worked.  I was told that I just needed to stay pregnant for 5 more weeks - that he'd be much better off if we could get to the 37-week mark.  He did it.  He made it until 37 weeks to the day.  On that day, I had some complications with my labor and needed an emergency C-section.  We were told that he'd likely need to go to the NICU for a while.  They had a team waiting for him when he was born, but they weren't needed.  Jack showed them that he wasn't going anywhere except with his mama!

All of this to just be born.  My boy is a fighter.

Very shortly after his birth, he made it very clear that his developmental path was going to differ from everyone else's.  Before we had names for what he was doing - before there were diagnoses to describe it all - we knew that he had to work 10 times harder to accomplish the everyday.  He didn't roll over until he was about 8 months old (I actually have it on video - I was so excited!).  He didn't crawl until he was almost 11 months old.  He didn't walk until he was about 16 months old.  Some other milestones - like cruising - were just skipped altogether.  Still, he worked so hard and did them all.

He's defied the odds ever since he was diagnosed with autism.  During one of his first evaluations at the age of 2, I was told to not expect my boy to speak until well after the time he turned 3.  I was told that speech was "not a realistic goal for the next year or so".  Babies Can't Wait didn't even assign him a speech therapist because they thought "he wasn't ready for speech therapy".  Guess what?  He showed him that projections mean nothing.  By this time last year, about 4 - 5 months into private speech therapy, he was acquiring some words.  At the age of 2.5-years old, my boy defied their projections.

When he was first evaluated, and every evaluation since, Jack has tested as having a cognitive delay.  Yet, he shows everyone just how bright he is by knowing all of his numbers, letters, and colors.  It took a lot of hard work and repetition and even playing into his perseverations to keep his interest up (who says that fixating is a bad thing?!?), but he's learned it.  He's not going to let some label, some measure of his cognitive abilities, define who he is and what he's capable of doing.

It's been in everything.  He has worked so hard for everything.  It's the way he had regressed to being non-verbal and then, a year after his regression, began to slowly regain his speech.  It's in the way that from birth he would vomit several times a day with meals and now he goes weeks without doing that.  It's in the way that he can now jump.  In the way that he couldn't point before, but now he will when prompted to point to something.  The same goes for clapping.

He did it all - the speech, the motor gains, feeding gains, cognitive skills, all of it.  It was his hard work that got him where he is.  Sure, there is a lot of hard on the part of therapists and teachers that has contributed to getting him to this point, but ultimately the victory is his.

The biggest change?  His smiles.  The big, beautiful smiles that I never saw when he was younger.  His affect was always so flat, but now it glows when he sees those magnetic letters.  Just allowing him to be himself - flapping hands and all - clearly makes him so much more comfortable in his own skin.  It shows.  He is happy to be himself, most of the time.

I eat up each blissful moment of my beautiful baby boy who has worked harder than any child should, but has come so far in the process.  I have nothing but pride for my angel.  He inspires me and shows me that anything - absolutely anything - is possible.

He has shown me what unconditional love is.  That even in the absence of the traditional displays of love - like hugs and kisses - that a love greater than I have ever known can pass between us simply by sitting next to each other while he arranges his letters.  That a smile can convey what a million words cannot.  In spite of all of the hard work it takes for him to learn and grow, Jack still finds time to teach me a lesson or two about just how much I can love someone else.

I know that we have a lifetime together of continuing to walk along this road of progress, and there may be twists, turns, and corkscrews of growth along the way, but I also have faith in my boy.  I know that he is a fighter.  I know that he'll continue to work hard every day to grow and learn.  I'll be there to support him, to hold his hand, and to think he is the greatest person I've ever known, but the triumphs are all Jack's.  He did this.  He fought.  With support and lots of therapy, he is the one who has come so far.  Not me.  Him.

He is the one who has come so far.

Thursday, October 18, 2012

Exhausted

Last Night's Reinventing Mommy Facebook status:

I've let the things that others say get to me a bit too much today. Time to put on a happy face, bake some brownies, and go to an Autism Walk planning meeting because - you know - that's what we do. We put one foot in front of the other and keep going. Because some days, that's victory enough.

---

As we mark 18 months since Diagnosis Day, today's post was supposed to be about how far Jack has come, the progress we've seen, and the challenges we still face.  I was even going to follow up with a post - not written yet - about how far I had come.  What a good place I am in.  I had it all written out, but I couldn't post it today.

That's because I don't feel like I'm in a good place today.  I sat down and wrote this piece and - eventually - trashed it, because the first time it was filled with too much anger.  You know what?  That's not me.  I'm not an angry person.  So, I started over a few hours later.

Today, I was exhausted.  I put my boy down for his nap with tears in my eyes.  I'm tired, battered, and feeling like I can't take it today.  I just want to shut the world - minus my angel - out and just forget it all, but I can't.  I have a meeting later on for which I'll have to don a happy face, so I need to get this out, suck it up, and pretend - as always - that everything's okay.

The funny thing is that it isn't Jack that's exhausting me today.  It's not autism that has brought about my tears.  My boy is my boy and he ebbs and flows like the oceans.  I've come to learn to take the bruising of the high tides and to relax in the lull of the low tides.

It is the rest of the world - the constant comments, opinions, and input - that has gotten the better of me today.  It's the little comments that have been cascading upon one another until, well, until I just couldn't contain it any longer.

It started a couple of weeks ago.  I've been holding this inside, but I have to let it out.  I had someone tell me - someone I really trust and appreciate - that I don't see the positives in my boy.  That I don't give my boy enough credit.

It hit me like a ton of bricks and I tried hard to hold it together.  That's hard for me to hear that someone might have that interpretation of my feelings about my boy, because the reality is anything but that.  Anything but that at all.

I'm constantly being reminded of how much progress he's made, as though I need convincing, but I see it.  Believe me, I see it.  I see it in the lack of throw up laundry I do compared to what I used to face daily.  I see it in the fact that my boy was - at this point last year - largely non-verbal (he had just begun to reacquire words - he had close to 20 at the end of last October).  I see it in the way that his eye contact has improved.  I see it in the way that I can say "Give me glug-glug" and he hands over his glug-glug (which is his milk, for those of you who don't speak Jack).

Just because I discuss his challenges and how far we have to go does not mean that I am not appreciative and acknowledging of just how far he has come.

It also should be said that I tend to talk to some people about the challenges we face because that is more relevant to them and their dealings with my boy.  It's not because I dwell on them, but because that is something that they need to know.  Other people, like grandparents and some friends, get more of the brags.

For people who are Facebook friends of mine, you might used to remember how we would have rough days and I would say "Autism wins."  Well, I don't do that anymore.  We still have rough days.  Hell, Jack threw up 5 - yes, 5 - days in a row this week.  We haven't seen that in a long time.  He had a weekend full of meltdowns, but I didn't advertise that.  I only tell people I trust - people who need to know - when we struggle these days.  I try to keep those days to myself so that people don't see my life as something to pity, because it's not.  I don't want people to read my words and feel fear.  I want them to examine my life - and my boy's life - and feel hope.

I feel like some people think that I don't see all of the wonderful, beautiful things that my boy does.  I feel like I have to convince them just how highly I think of my boy.  Do you know how awful that feels when you feel like you have to convince people that you love and believe in your child?

With that, there is a constant push-and-pull.  You feel like you have to convince the world that your child is so capable, yet getting services and dealing with issues at school seems to be all about what your child can't do.

Then, there is a constant back-and-forth about what you're doing for your child.  There will be some who claim you could be doing more (like I really could manage that right now).  There will be others who claim that you're doing too much ("let your kid be a kid!", as though I don't want to let my kid enjoy his childhood).  I'll get recommendations from providers that I simply can't implement.  I'll have people bugging me to get on the school, a therapist, a doctor, or someone about a particular issue.  If I don't jump and have it done, I'm reminded that it's very important.

The problem is that it's all important.  Every little thing is important in his life.  He has global delays, so by definition we are working on everything - cognitive, language, fine/gross motor, social/emotional, and self-help - but there is only so much I can do at once!  We have to teach him every single piece of it; he doesn't just infer this stuff that way that other children do, and I get that, but it's hard to make every moment a teaching moment.  It makes me want to throw up my hands sometimes, because it's next to impossible to remember each and every little thing we need to be fostering at any given moment.

The back-and-forth, the over-abundance of opinions, the constant fighting for what he needs has simply worn me down over the past couple of weeks.  I feel like I have to convince people of what he's capable of doing given the appropriate support.  I feel like I have to fight, and fight, and fight for that support - for someone to just help him eat and help him not shut himself off from the world - despite exhaustive documentation and test results showing he needs it.  Then, I have to convince people - people who think I'm "too negative" - just how much I think of my boy.  How much I love him.  How when I describe a challenge, that is just one single sentence out of the hundreds I say daily about my boy.  How such a large percentage of what I say is singing his praises and telling the world just how much I love him.

If there is one thing I know now, it is this - I am the expert on my child.  My child is different from every other, including other kids on the spectrum.  I know his strengths.  I know his challenges.  I know what he's capable of doing and I know his limits.

I also know that I love him more than anyone else on Earth.

Why can't that be enough?  Why can't it be more simple?  Why can't the world back off a bit?  It really does make me want to let Jack sit next to me on the couch for days on end playing his iPad simply because it makes him happy and because sitting next to him and seeing him happy makes me happy in return.

But I can't.  Ultimately, it's not what he needs, and I know that.  The easy way out isn't going to help him at all.  Life isn't easy.

I'm sure this was a post of run-on sentences and endless blabbering, but that's just me today.  I needed to let it out.  You'll have to excuse me, because I'm just a mama who is tired.  I'll wipe the tears off and put on that smile because I have to not show people that what they say really hurts.  Sometimes, you have to triumph in the fact that putting one foot in front of the other really is the victory.

Wednesday, October 17, 2012

Choose Your Words Carefully

I might belabor this point a bit on here, but I feel it needs to be belabored because obviously people don't get it.  They just don't.  I rail on about it, yet people still do it.  They get defensive when I try to politely point out the harm in what they've done.  I don't understand how it is so difficult to get people to listen.

Yet, at least 2 - 3 times a week, I see or hear someone using the following word:

retarded

I've had family members do it.  I've had friends do it.  I've heard it used to get a laugh.  I've heard it used to get a reaction.  I've heard it used as a straight-up insult.

It is also a word that people have used in reference to my child.

I will tell you that I cannot describe how hurtful it is when you hear someone use this word in reference - in derogatory reference - to your own child.  While I don't want to rehash my first experience hearing someone say this about my child, I'll direct you to click --> here <-- to read all about it.

Because it's simply to painful for to put it out in type again.  Because I know that, in our society where we give so little regard to our most vulnerable of citizens, I will likely hear this word used to describe my child again.

Here is the thing that you must understand, that word is no longer even used as a medical term by many people, but what if it were?  Does that make it okay for you to describe something in the following way:

That song/show/person/thing/object is so retarded.

or, when someone hasn't done or said something right

I'm so retarded.

So you say that you didn't mean it that way, right?  Okay, well, you're using a word that is and has been used to describe children - like mine - who are developmentally disabled.  Yet, you use it as an insult?  I promise that my son is a much better person than most people I meet, so you are not doing an effective job of insulting anyone or anything if you say that they are like him.

Oh, so I should lighten up and not be so sensitive?  I get that a lot, too.  Surprisingly enough, most of the people you will hear that still use this word

retarded

will find it offensive if someone uses this word

gay.

Both are terms that either are currently used or have been used to describe groups of people.  Both have also been used as derogatory terms in common slang.  Yet, why is it acceptable to use the former when people find it so offensive to use the latter?  Is it because one group can speak for themselves and the other struggles with that same degree of self-advocacy?

Here's the thing - they are both offensive.  I consider that equating the word "stupid" or something derogatory to either group of people is horridly offensive.  Surely, you can be more creative with your insults than that.  Surely you can find a way to offend the target of your aims while leaving other people - good people - out of it?

Or, better yet, you can speak only kind words.  That's truly the best way to live.

This is what you should know - it's not funny.  It's not cool.  The attention you get from using it doesn't make people like you more.  When you use words like that, you are hurting the public perception of someone's child - someone's baby.  You are throwing barbs right at the heart of mamas like myself who bear the weight of the world on our shoulders for our children.  We want to give our kids a more just world full of tolerance and understanding, rather than insults and slurs.

Because you would be privileged to be as good of a person as our children are - as good of a person as my boy is.  You would know about hard work and perseverance and triumph and struggle and love and all of the messiness that comes in between it all.  You would know what it's like to wear your heart on your sleeve and send it off on a bus each day with the hopes that it comes home unblemished.  You would know how sweet one word, one smile, and one hug can be.

That is no insult.  That is living life to the fullest.  So watch your words, because they may hurt someone more than you can even imagine.

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To hear more about why this is so incredibly offensive to special needs parents, please read my previous post on The R Word by clicking --> here <--, or better yet, take the pledge to end using that word by going to Spread the Word to End the Word --> here <--.  We can all make a difference by choosing our words carefully.

Tuesday, October 16, 2012

60 Seconds of the Worst Kind of Fear

Friday Morning - 11:35 AM: 

We were at the park, as we are every Friday morning after school, waiting for Jack's special instructor.

There's a predictable routine to Jack's movements throughout the park.  We walk from the parking lot - hand-in-hand after a year plus of intensive behavioral work - and stop at the first piece of play equipment we encounter, which is a slide.  Jack always releases my hand about 15 feet away from it and rushes towards the slide.  Each time, I have to scramble after him because he never notices the drainage ditch that lies between him and vestibular bliss.  I always catch him just a couple of feet before he falls in.  What I wouldn't give for him to notice that obstacle in his path.

The stairs on this piece of equipment are hard for him to navigate.  There is a wide gap between each support bar and the stairs are so wide that he can only hold with a single handhold.  He inevitably takes several stairs crawling.  He takes a few turns on the yellow slide - always the yellow one - before moving towards a second piece of play equipment just a short distance away.  This one has a narrow staircase with both handrails within easy reach.  He can walk up these stairs completely upright and, with the exception of a standby spot from Mommy, independently.  It's the little things, like walking independently up three stairs, that are so big.

He takes one turn on this slide, which admittedly is a pretty lame slide, before moving on to the big ones.  The slides that seem to rise like skyscrapers from the foundation of the playground.

The slides that he would have no awareness of if not for his father taking him up to them once in the recent past.

He loves these slides.  They are so tall and fast that they throw his little body around like a rag doll within their enclosed tubes.  He loves the bumping, the speed, and the impacts.

The problem comes in getting him to the top to slide.  Jack needs a spotter on these stairs, so someone has to follow him.  Then, when he reaches the top of the stairs, someone has to heave-ho him up the ladder.  He can't support his own weight going up the ladder, so he requires assistance.

That also means that we typically need two people to take Jack to the playground - one to help him up to the top and the other to wait at the bottom for him to emerge from the slides.  Normally, his special instructor serves the latter function during our sessions at the park, but today she was running late.

Jack was heading towards the bigger slides.  It was the next step in the sequence.  I kept stalling, trying to wait for Ms. SI to get there.  I tried to direct him towards a bell on the play structure that he loves.

"Jack, do you want to go ring the bell?"

"All done!" he snapped.  He kept walking.  "Slide.  More slide."

Damn.  I assessed the situation.  Did I dare let him get a head-start on sliding and handle the whole slide-to-ground-to-slide transit alone, or did I risk a meltdown by delaying what was - to him - the next vital component of every park outing?  I decided to go ahead, knowing that a meltdown might ruin the entire session.  Since we pay out-of-pocket for our special instruction sessions, I wanted to get every minutes worth of the time.

He was already scrambling up the stairs.  I stood guard behind him, as his right leg always led and his left dragged slightly behind, as it always seems to do on these stairs.  We got to the ladder that led to the highest level of the play structure and atop it, the pinnacle of Jack's sliding dreams - the magical green slide.  I have no idea why the green is better than the red, but it's always the green he chooses.  He'll continue this circuit over and over again until his fatigue overwhelms him.  For his little body and all of the effort it takes to scale this equipment, it doesn't take long for fatigue to set in.

I helped Jack up the ladder.  I remember him struggling to motor plan the positioning of his legs on the ladder, so I kept tapping his leg to move.  Finally, he was at the top.

I asked, as I always do, "More red or more green?"  I always know that I shouldn't do the preferred second, but for some reason I can never do it in practice.

He parroted back, "Green."

I turned to rush back down, but my way was blocked by a throng of preschoolers from the park's creative play program.  I realized I might not make it down in time, but Jack always takes a while to actually begin to descend down the slide.  I looked up and saw he was still at the top.  As I made my way through the mass of children, I kept looking back, confirming his location, until he wasn't there anymore.

My eyes shot down to the bottom of the slide, which emerges out of sight from where I was positioned at the time.  I was waiting to see his little frame round the corner.

I never saw him.

I finally got to the bottom and ran over to the mouth of the slide.  He wasn't there.  I looked around, but he wasn't there, either.  I looked towards the stairs to see if he headed back up, but he wasn't there.

I began to feel my heart thumping out of my chest.  "Jack, where are you?"  I yelled.  I knew he wasn't going to respond with anything that would reveal his location, but instinct told me to keep yelling.  "Jack?"  JACK, WHERE ARE YOU?!?"  I saw nothing.  No indication of my boy.

I searched around the play equipment.  I looked by the bell.  The creative play class was heading towards another playground, so there were children everywhere.  I searched in vain among them to see if he was just lost in the shuffle.  He wasn't there, either.

"JACK!  COME HERE, JACK!"  I don't know why I was saying it, but maybe I hoped - I prayed - that this would be the first time he would respond to the "come here" prompt.

I looked towards the other playground.  I knew that in between myself and the street was a staircase too large for him to ascend on his own, so I looked in the other direction towards the creek.

The fear flooded over me.  He can't respond.  He has decreased safety awareness.  Hell, he has decreased awareness - period.  He gets confused easily.  I felt like I couldn't breathe.

That's when I saw him.  He was standing near a picnic pavilion a short distance away, his eyes pointed up at the sky with his back to me.  I ran as fast as my feet would carry me across the mulch-laden ground.  "Jack!" I squeaked out as I approached.

He was humming and staring off into space.  My guess is that he got confused at the bottom of the slide, as he typically needs someone to lead him back over towards the correct stairs to climb the slide.  He must have continued to wander away looking for the slide after that.  Or, he simply saw something near the pavilion that caught his eye.  He has had wandering incidents in the past in which something caught his attention - like a balloon or a ball - and he simply, and silently, walked away.  It's even happened at school.  Whatever happened, he was here and he had frozen.

Thank God that he froze.  Thank God that he stopped.

The whole ordeal felt like it lasted for millennia, but in reality only about 60 - 90 seconds elapsed.  "Jack, baby?"  The humming continued.  He was fine.  I was not.  I started choking back tears as I squeezed by boy tight.  He kept humming.

To the other parents, I'm sure the sight seemed very bizarre.  Why is this woman so upset after she lost sight of her child for just over a minute?  He's 3.5, can't he have some independence?

Yes and no.  Yes, I can foster independence when I can.  No, I can't leave him alone for one second, because he simply doesn't have the same safety filters that a typical child does.  We still keep childproof locks on cabinet doors because he will mouth the bottles of cleaner.  We keep gates up because he can fall down the stairs if he gets up them.  He still can't descend stairs, so we especially keep the upstairs gated with knob guards on his bedroom door.  We keep a lock box in our garage because he has accidentally locked us out of the house twice (he hates open doors), but he can't let us back in.

Hell, I have to keep him from walking straight into a ditch every single Friday because he simply doesn't notice it.

But he was okay.  I was not.  I felt incredibly guilty.  I knew better!  I should have waited until Ms. SI arrived.  I knew that I couldn't manage it all, but I didn't want to risk the meltdown.  I should have waited.

Moments later, as if on cue, Ms. SI arrived.  She saw the look on my face and asked what was wrong.  I told her.  She had the same look of fear, because she knew just how scary - how bad - that situation could have been.

We brainstormed what to do next time.  We talked about prompting him with "Jack says 'HERE'" to play into his ability to follow that prompt and the echolalia.  After all, he might not respond to "Jack, where are you?" with "HERE!", but he'll definitely respond to "Jack says, 'HERE'" with a "HERE".

We also talked about the fact that I absolutely have to get the wanderer shoe ID tags I got in our Big Red Safety Box sent off to the engraver so that they can be on him at all times.

She worked with him the rest of the session with responding to a "Jack, where are you?" prompt with "HERE!"  He always needed prompting, so we talked about how we can't rely on him to provide a response.  It's up to us - to all of us who care for Jack - to always stay vigilant.

It's a problem so many of us face and I wish I had more solutions, but I don't.  I just held his hand a little tighter and gave him a few extra hugs that day.  I was a bit more clingy and I didn't want him out of my sight, even when someone else had a close watch over him.

It definitely made me count my blessings and pray that it never, ever happens again.

---

My child is a wanderer, and I know that he's not alone.  Many of our kids wander.  In fact, almost half of all kids with an ASD (about 49%) will have a wandering incident.  If you have a wanderer, please check out the National Autism Association's Big Red Safety Box program.  At limited times during the year, they offer FREE (yes, free) safety boxes full of tools to help keep your wanderer safe, including visuals and shoe ID tags.  They also have downloadable Big Red Safety Toolkits both for first responders and caregivers.

We've already gotten a Big Red Safety Box for our household.  If you don't need one, consider donating to this cause to help provide a box for another family of a wandering child.  You can get information on the Big Red Safety Box program and access to the Toolkits by going to the National Autism Association's website by clicking on the link below:

http://nationalautismassociation.org/big-red-safety-box/

Monday, October 15, 2012

The Pumpkin Patch, Version 4.0

It's our fourth year of Halloween revelry with my boy.  It is truly my belief that Halloween is one of the worst holidays for our special needs kiddos, what with costumes that they don't like to wear, candy that they don't like to eat, and lots of noise and overstimulation everywhere you look.  Even if they like the candy, our kids have to speak in order to get it.  Yeah, because I have a hard time getting Jack to greet unfamiliar people, let alone say something like "Trick or Treat" - a phrase which has no meaning to him.

Each year, we press on with the festivities - in a modified way, of course.  Included in that is our yearly trip to the pumpkin patch.  We live close to a pumpkin patch that offers most of the traditional "pumpkin patch experience", complete with apple cider (that is irritatingly never hot), homemade fried pies (a can't miss), and a hayride.

This year, we decided to change our plans.  Normally, we just go to the pumpkin patch a couple of weeks prior to Halloween, but this year we decided to go early in October with an organization with which Jack will soon start play sessions (more on that in another post).  We thought that this would be setting Jack up for the best chance of success.  After all, the crowds would be lighter early in the year.  There would be other special needs families there, and there is something to be said for strength in numbers.

A few things changed this year.  The sleepy little pumpkin patch suddenly started charging for everything - including parking!

When we got there, we sought out the group.  They happened to be perched near a swing set, complete with a nice, long slide.

Yes, there was a slide.  Yes, Jack noticed it immediately.  And yes, it's all he wanted to do from that moment forward.  He wanted to do circuit after circuit on that slide.  I left Brian and Jack to the fun of repeating the slide process over and over again while I went and talked to several of the other parents and some of the leaders.  I got a ticket for Jack to pick up a free baby pumpkin in the patch just as one of the leaders pointed out that the line for the hayride to the patch just got blissfully shorter.

No wait.  I knew that was our window.  I motioned to Brian, who scooped Jack up much to his dismay.  There was fussing and flailing about the situation.  I hoped that the hayride might be an incentive once he realized what we were doing, but it wasn't this year.  Instead, he kept perseverating on the slide.

"More slide.  More slide.  MORE SLIDE!!!"  The chorus rang through my head.  I was briefly contemplating my escape options, until I had a realization.  The way that Jack learns is through repetition, repetition, and repetition.  The only way that the pumpkin patch was going to get easier was for us to keep coming.  We can't hide from the world.  We have to expose him to these experiences.  We can continue to tweak them as we go, but keeping Jack locked up doesn't do him - or anyone else - any favors.

I held on to him and carried him on to the hayride.

The ride out to the patch was uneventful.  Jack spaced out watching the large wheels of the tractor in front of us.  By the vacant expression on his face, I could tell he was a bit uneasy.  When we got out to the patch, we ended up carrying him most of the way as his little body couldn't quite propel itself over the rugged terrain.  Of course, for a day that we would have to carry Jack so much, nature decided that it would be best if it was incredibly hot outside - like approaching the low 80s hot.  We alternated bearing Jack's weight as the sweat drenched down our backs in pursuit of the perfect Reinventing family pumpkin.

Jack did get his baby pumpkin, which we always perch on his dresser for the holiday.  He picked up one, but got rid of it quickly.  I ended up picking out a baby pumpkin for him.  While he didn't choose it himself, he did hold it this year, which was a triumph.  Of course, if by "holding it" you also mean "mouthing it"...well, he did that, too.

This was not what the pumpkin patch owners
intended Jack to do with the pumpkins,
I'm sure.
He also discovered that pumpkins roll, which makes it especially fun to kick them like a 3.5-year old bully might kick over his friends' block towers.  He wasn't happy that we put that behavior to an end, but we didn't want him putting his foot through a pumpkin.

Jack was antsy the rest of the time we were there, so we decided to cut our losses, pay, and leave.  Brian and I each got a fried blueberry pie and dreamed of the day that Jack could share one with us.  As we were leaving, bags of farm goodies and two pumpkins in tow - as well as a very heavy and stimmy preschooler in my arms - I temporarily felt a sense of piece at what has just become our normal.  We'll have abbreviated and modified events, but that's okay.  He was done and we knew better than to push it further, or let him see the slide and begin the cycle of perseveration once again.

There was a little girl who kept staring at my boy as he hummed.  I wanted so badly to ask her "What are you looking at?", but I held my tongue.  It's probably not a good idea to accuse other children of staring too much at my boy as he hums and flaps.  Children are just curious of differences, and I need to remember that, lest I get in a rumble with another parent.

When we got to the car, we reflected back on the experience.  It was much briefer than last year's trip to the pumpkin patch and we conceded that this might be the way we might have to go about this experience for the foreseeable future.  Meanwhile, the experience was really no better or worse than last year's.  Call it homeostasis, or the relative lack of change from what we experienced last year.

We'll take homeostasis.

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To read about the Pumpkin Patch, Version 3.0 - A Most Sincere (and Sensory) Pumpkin Patch, click --> here <--!