Friday, August 31, 2012

Still a Child

Special needs kids have busy schedules.  At the tender age of 3.5 years old, my son does the following each week:

4 hours of Preschool Special Education every weekday - plus - at school he gets:

  • 2 - 30 minute sessions of Occupational Therapy 
  • 2 - 30 minute sessions of Speech Therapy  (the SLP pushes in to team-teach 2 days a week)
  • 1 - 30 minute session of Physical Therapy
  • Music Therapy and Adaptive Art with his class

2 - 1 hour sessions of Occupational Therapy
2 - 1 hour sessions of Speech/Feeding Therapy
1 hour of Aquatic Physical Therapy
1 hour of Special Instruction
1 hour of Special Needs Social Skills Play Group
1 hour of Special Needs Music Class

- plus - 1 to 2 hours of DIR/Floortime daily (which we're getting better at implementing as naturally as we can at home)

Now, I'm not complaining, don't get me wrong.  Jack still has a very long way to go, but he wouldn't be where he is right now without all of that.  It has taken Jack a year and a half of an intensive therapy regimen to see what progress we have seen.  I'm incredibly grateful that we have been able to provide that and that we continue to be able to provide that for him.

At the risk of sounding contradictory, don't you ever feel like your kid just needs to be a kid?  I used to abandon this idea, thinking that every moment of his day needed to be crammed with...well...something.  If he wasn't in therapy or school, I needed to be doing Floortime as though my life depended on it.

Well, that burned us both out.  We couldn't sustain it.  We all need time to unwind and relax.  Sure, if left to his own devices, Jack will revert to self-stimulatory behavior and fixating on letters.  He'll self-absorb into his letters or his iPad.  I used to fight stimming with every bone in my body.  I was going to drag Jack kicking and screaming out of his self-absorption and into my world and I was going to keep him here.

The lesson I've learned a year and a half into his diagnosis is that it's simply not possible.  While it may change forms over time, I've come to realize that stimming and self-absorption is always going to be a part of who Jack is.  He will always feel more comfortable in his world, where he can be himself and who he is.

While I may not implicitly allow or embrace it, I must learn to accept it.  To accept him.  To accept that this is who he is, and that there might be little I can do to change that aspect of his neurology.

He has a busy schedule.  His brain is in overload by the end of the day.  It is cruel for me to not allow him some release.

In our house, you'll find that we don't fight stimming as much as we used to do so.  I never discourage the hand-flapping.  I allow him some time each day to arrange his letters.  I give him 30 minutes of iPad time a day.  I allow him to watch one episode of Super Why! a day.  On the days when we don't have school or therapy, I allow him to just take a breather and relax.

Why?  Because my autistic child is just that - a child.  Regardless of his special needs, he is a little boy who deserves time to have fun and play.  His play may not look what you and I consider to be "play", but he enjoys it.  I should allow that enjoyment.  He deserves to relax and be happy.

The lesson learned in the past year and a half is this - every moment can be a teaching moment, but not every moment has to be a teaching moment.  Our kids are different, but they're still kids.  We should allow them a bit of precious time each day to be themselves.  They'll be happier for it.  I'd like to hope that one day Jack will be able to understand that I love him for who he is, letters and all.

And I do love him more than anyone on Earth - letters and all.

Thursday, August 30, 2012

The Storm

7:45 PM: Tuesday Night

We are in the thick of battle.  It began with the transition - that damned transition that seems to get him these days.  He simply can't handle it as he once could.  His words no longer make sense, oscillating between exclaiming "MORE SOCKS!" and "ALL DONE SOCKS!" through heaves, tears, and screams.

Everything seems wrong.  The toothbrush is new and I couldn't find one that was identical to his previous one.  It's a similar color, but not the same.  He knows it, too.  He's had it for several days, but it's not accepted yet.  He fought that part of the routine harder than he ever has recently.

I rocked him briefly - his chest heaving against mine - as he sobs and picks at his toes.  I keep inspecting them, trying to figure out why he can't stop rubbing them, but I see no reason for his perseveration.  It must be stimming for stimming's sake.

In the tub, he continues to scream.  We try everything - making gentle "shush" sounds, rocking, our whole bag of tricks - but nothing works.  We just power through.

The screaming continues as we take him out of the tub and bring him to his room.  At this point, his body is beyond his control.  He flails and kicks as we attempt to diaper him.  His foot finds my jaw, leaving me temporarily reeling and shaken.  I let the pain of the impact linger on my face.

Through the perpetual motion, we zip him into his Sleep Sack and place him in the sanctuary of his crib.  It takes the two of us to manage to subdue our boy - our boy with low muscle tone who still shows increasing strength with age.  Saying our goodnights and I love yous, we close the door and walk away.

For a moment, I feel defeat.  What will the future bring?  Will each passing year bring with it a struggle to calm the storm?

I walk away, thinking that I cannot let those thoughts enter my head.  Not now.  Not at this moment.  It is a bridge I will cross upon approach, and not a moment before.

---

A hurricane is upon the Southeast.  Safely nestled here in Atlanta, we expect to get nothing more than a much needed deluge of rain.

In the Reinventing house, we're being pounded by a deluge of another kind.  It's one that only a special needs parent can truly appreciate and understand.  It's one that I hope will not make it's presence this time every year.

You see, Jack is in his third week of school.  Each morning is the same - we wake him at 6:30, get him dressed, comb his hair, put on his shoes, and wait for the bus to arrive.  Each morning, he screams bloody murder throughout the entire routine.  He screams "ALL DONE SOOL!" - still doesn't do the back sounds - as the tears fall from his cheeks.

It's hard on me as a mama.  I know it's good for my boy to go to school.  I know he needs it - the socialization, the demands, and the routine - and I know it's good for him.  It's a fact of life that we all are required to go to school for at least a portion of our childhoods.  I know it's really not an option for him or for us.  Private preschools can't accommodate his needs.  He needs this.

Sure, it could be the transitions, those damned transitions that still catch my boy and his need for predictability and sameness.  Still, to hear your child scream as though you are torturing him by sending him to school or therapy...well, it begins to wear you down.  Each day, though, I do it.

The tears always subside with the school bus.  I believe that Jack does like the bus.  The ride - I imagine - is probably bumpier and, therefore, more fun than Mommy's car ever could be.  There are few children on the special needs bus - he's one of 5 total - so it's probably a pleasant ride for him.

I pick him up around lunchtime and see good marks on his day sheet.  I know that he's not eating great at school.  I know that he really doesn't like doing OT at school.  I know that he loves music therapy.  I know things are not always easy, but for the most part I get good reports.

He then goes to therapy - and yes, he goes every. single. day. - and I hear of the progress.  It's progress that can't always be measured by a standardized test, but it's there.  It's reassurance that, regardless of the crying and wailing as we leave the house, it's all worth it.

Each day, he comes home and takes a nap - a long, glorious nap that the mother of a 3 1/2 year old feels fortunate to get.  He's fatigued, working harder than he ever has, and the demands couldn't be higher on him.  His body yields to it and gives itself over to sleep.

You would think this would be all.  Special needs mamas, especially those of us with sensory kiddos, know better.  You see, for those good days at school and therapy, our kids are waging a battle with themselves to stay regulated, to stay focused, and to simply field the demands coming their way.  It's an onslaught, and it leaves them tired, unwilling to process more demands.

It leaves my boy reeling.  It did about 3 weeks into last school year as well.  ESY didn't last long enough for it, but here it is.  The surge is upon us.

Evenings have become a time of meltdowns.  He screams.  He flails.  Routines that had become more stable for him - like tooth brushing and bathtime - are suddenly much too much all over again.  We power through regardless.  We have to.

He is less verbal.  He wants to stim.  If I try to break his perseveration, he screams.  He fixates to the point of no return.  Hell, I've had to turn to giving him a timer to calm him.  No, the timer doesn't calm him by having a set amount of time to relax; he simply adores watching the numbers count down.  I give my son a timer so he can watch it like a television show, flapping his hands and temporarily rising out of himself.

This go around, I know - I hope - that the storm is temporary.  You see, being a year and a half into this process, and being Jack's mother for longer than that, I know that Jack has always had sensory and behavioral challenges.  There is a certain level of disregulation that is just the status quo for him.  However, I know that it comes in waves.  There will be weeks - months even - of an onslaught of a storm, but like a hurricane, it will not last forever.  He will rise over that peak and descend the other side.

I also know that while it might break my heart with the screaming and flailing and loss of control that I cannot seem to stop or even fully prevent in my boy, I too can come out of it bruised, but more or less unscathed.

Bruises heal.  I will heal.  In those periods of calm before the storm, I'll prepare myself for the next round that will inevitably come.  I will build up my strength with the knowledge that I have survived once, so I will survive again.

Monday, August 27, 2012

Just a Trim

Instruments of torture for my poor angel.
There are some aspects of life that are - more or less - mandatory.  We all go to the doctor periodically to maintain a state of optimal health.  We all go to school at some point in our lives.

And unless you have a parent who can moonlight as an amateur barber, we all have to get our hair cut from time to time.  Well, maybe we don't, but society expects a certain degree of grooming.  As the mother of a child with special needs, I always strive to have him look very well put-together.  Hell, he may be screaming bloody murder, but he's going to look good doing it.

Haircuts have always been a nightmare of a battle for my boy.  For a sensory avoider, I can think of nothing worse than a haircut.  There is the noise of the buzzers, blow-dryers, and the other customers.  There is vibration, someone touching you - touching your face no less, and the necessity of remaining absolutely still.  There is no wearing headphones to escape it.

Jack is like an elephant; he never forgets.  The children's barber that we use is located in a shopping center with both a Target and a Chick-Fil-A.  Any time that we enter the shopping center - even to just go through the drive-thru - we hear a familiar chorus from the back seat...

All Done Hair Hut!  All Done Hair Hut!  ALL DONE HAIR HUT!!!

And yes, he pronounces it "hair hut".  He still can't make those back sounds.

He gets very worked up as we pass the barber, but finally he calms down as he realizes that the car will not be stopping there.

Except...every 6-8 weeks the car does stop there.  When it does, there is screaming to be heard.  You can probably hear the screams from a mile away.  We pull him out of the car, tears streaming down his face.  I always walk inside first and try to assess the situation, the wait time, and the stylists that are available.

This brings us to this last Saturday.  Jack needed a haircut, with his last being just before the Fourth of July.  I had refrained from bringing him in the previous 2 weeks, as I knew that the place would be flooded by families getting those much needed school haircuts.  Jack's special needs music class was on a brief hiatus to allow kids to settle into the school year, so it seemed the perfect opportunity to get the ever dreaded haircut.  Being 2 weeks into school, you would imagine that the place would be much quieter, right?

Wrong.

We got inside, Jack still sobbing and screaming, and I inquired as to the wait.  20 minutes.  It could be worse, but it could be better.  We led Jack over to the waiting area, which sports a couple of couches and a train table.  Train tables seem to perplex Jack a bit.  He did as I expected him to do; he grabbed a train car and began to walk circles around the table.  He was humming his nervous hum, but the screaming had temporarily stopped.  His eyes still bore the redness from the onslaught just a few moments prior.

A few minutes passed before Jack stopped.  "Up.  Up.  More up," he says to no one in particular.  I pick him up, but he begins to squirm immediately.  Obviously, being held is not what he wanted.  I decided to cut my losses and hand over my iPhone.  His face erupts into a gleeful grin as he begins to play the old standby - Monopoly.  It's amazing that self-feeding eludes him and communication is a huge challenge, but he can buy and sell property in Monopoly and build houses.  Talk about splintered development.

Faster than I expect, I hear his name.  "Jack?"  We head over toward the chairs.  There is a row of chairs that are all designed to look like all manner of vehicles.  There's a train, a fire truck, a taxi cab, and an airplane.  These seats are always offered to Jack, but he doesn't respond, except with the usual "ALL DONE!!!"

I suggest that we just go with Jack sitting in Brian's lap again.  Brian sits in a traditional barber's chair and Jack is placed in his lap.  Then it starts.

Only, for whatever reason, this time it was worse.  Much worse.  The second the switch flipped on the buzzers, Jack lost control.  He began slamming his head into Brian's chest, head-butting him over and over again.  He flailed.  He shook his head violently back and forth.  It took all of Brian's energy to keep him pinned in the seat, as Jack stiffened his body in an attempt to fight the assault of the clippers to his head.  Tears streamed down his face.  I stood by with a washcloth to wipe tears and hair off of his face, as the feeling of both can cause Jack to react even more violently.

I looked over briefly at the group of parents staring over in the waiting area as it took 3 people to hold my screaming baby down for a haircut.  I turned my back to them to focus on him.  It worked; I didn't notice anything else.  Not the stares, not the shock, and not even how the haircut was actually going, because if I'd noticed that, I'd have seen how bad his hair looked.  It was patchy, with spots here and there being far too short.  I can't blame the stylist, though.  She was doing as best as she could with a flailing, screaming, head-butting, and shaking 3.5 year old.

I always wonder what I must look like to others in these instances, when I'm doing battle with my boy's body.  I feel like there are lumps in my throat - like I must look as though I am on the verge of tears - but I'm always told that I look very stoic and focused.  It's odd, because that's not what I feel.  When my boy is so out of control, I feel like I am teetering on the edge of breaking.

Then it's done and I scoop him up.  His body is still covered with hair, but I could care less.  I can feel the heaving of his little chest against mine; the tears are still fresh on his cheeks.  How I wish I could take this from him.

Instead, I pay the bill, leave a generous tip - lest we scare the stylists off - and head to the car.  I hold out hope that haircuts will one day be easier.  I hope that we can give him the tools to handle it all.  I hope that he can feel the pride that will be overflowing from my heart the day that he sits in that chair all by himself and gets a haircut.

I have to believe that day will come.

Thursday, August 23, 2012

Last Friday Night


Do you ever get the sinking feeling that when you are enjoying yourself, something must be going horridly wrong?  Well, that was my Friday night.

Brian and I were with my Dad, my stepmom, and two of my siblings at a baseball game – one of only two baseball games that I have sat through in its entirety since I got pregnant with Jack in 2008.  That’s four years, people - four long years for a person who used to attend Opening Day every single year.

So, I stayed and enjoyed each moment.  I watched the legend hit a home run.  I ate a hot dog.  I would have chased it with a beer if I weren’t with my siblings – who are much, much younger than me – and my Dad.  I even stayed to watch the fireworks show afterwards.  It was blissful.

Once we got home, I noticed that Jack’s grandparents weren’t asleep in their usual places on the couch and armchair, as is custom whenever they watch Jack.  Instead, there was activity upstairs.  Jack was awake.

Jack had thrown up.  Not once, but a couple of times.  They had run laundry already, but Jack threw up again.

I flew upstairs and found Jack not upset, but seemingly indifferent to the events of the previous few minutes.  There he was, his Sleep Sack coated with a layer of yuck, and his other Sleep Sack – the one he insists on sleeping with in his crib – similarly affected.  It was already 12:30 AM.

I changed Jack out of the soiled Sleep Sack and left him in his pajamas, which survived the melee.  After sending the soiled crib sheets and various additional garments along with Brian to be washed, I put new sheets in Jack’s crib and decided to try to put him in bed sans Sleep Sack.

Big mistake.  The screams began.  I picked up my crying baby, fearful of another stress vomiting episode, and began to rock him.

“More nappy?”  He wants to sleep.  My back is killing me.  I decide to take him into our bedroom to try to get him to fall asleep.  Now, the issue with this is that Jack has never slept anywhere other than his Pack n’ Play – which we no longer use due to Jack’s size – or his crib.  He always has slept in a Sleep Sack.  I crossed my fingers that he would be able to break from his routine just this once.  I was desperate.  I needed sleep.  It was approaching 1:30 AM.

I laid Jack on the bed.  “All done!”  I picked him up and laid him against my chest as I sat upright in bed.  Brian was downstairs tending the laundry and plowing through the work that he neglected earlier in the evening so that he could join us for the game.  The fatigue was wearing me down.

He sat and laid down in two-minute cycles as I fought sleep.  I could tell he was tired - I know he was tired - but he simply was not allowing himself to sleep.  Without his beloved "blue" and "red" - his Sleep Sacks - he could not sleep.  

Then, I heard it.  SPLAT!  He threw up...on my sheets.

Honestly, at that point, I could have cared less.  I needed to sleep and the second that Jack went to bed, I was crawling in mine, even if that meant sleeping on a bare mattress with a quilt draped on top of me.

Finally, as 2:30 AM rolled around, Brian came upstairs with clean and dry Sleep Sacks.  Concerned that Jack was vomiting so much, I nestled him into his "blue" and tried to get him to sleep in the bed with me, but he wasn't having it.  It wasn't his crib and his sense of consistency wouldn't allow it.  It made me wonder if we'll ever get him out of the crib.  Surely, he won't be an 18-year old sleeping in a crib, but will he still be there at 4?

For that night, I couldn't worry about the future.  He was exhausted.  I was exhausted.  We both needed sleep.  I gently carried my baby boy to his room, placed a final kiss on his soft little forehead, and laid him down in his crib - his safe haven - and walked back out the door.

Oh, how I wished that - just for one night - Jack could be like every other kid, more than content to sleep in his parents' room!  I might not have been as sleep-deprived the next morning.  Instead, I went to sleep, fingers metaphorically crossed that this was not the start of another period of stress vomiting for my boy.

Wednesday, August 22, 2012

Never More Than You Can Handle

Faith.  It's something that I try to avoid talking about too much.  It's polarizing and, in my opinion, a very private thing.  For example, take 5 people and you will get 5 very different viewpoints.  Take 5 Catholics and you will get 5 different viewpoints.  The same goes for Baptists, Presbyterians, and every other denomination and religion on our planet.  It's an intensely personal experience and one for which there are no right answers.

It's why people go to college to study, debate, and rewrite - yes, rewrite - our theological basis for our beliefs.  Even the Bible goes through new translations.  Religion is filled with the subjective ideals of those who practice it, thus it makes for shaky conversation.

I was writing a post for another website about things that people say to special needs parents that I hate hearing, which brought me around to this subject.  This statement.  It's one that I've avoided, but that I feel like I should voice my opinion on, because it's a statement that I hear all too frequently and it makes me cringe each time.

While this is strictly my opinion, and I know there are some special needs moms that probably take great comfort in such statements, I really hate it when people bring religion into my son's special needs. Particularly, it bothers me when people try to say to me, "God gave you Jack because He knows you can handle this."  Another one I'll occasionally get is "God never gives us more than we can handle."

Here's the reason both of these statements bother me - they seem to assume that it's all about me.  That God gave me a special needs child because I'm a strong enough person.

What about Jack?

The thought that God, someone who is a Father and protector, would purposefully give a child a disability is, to me, problematic.  I definitely can learn from Jack, but why should Jack have to be that teacher?  Why can't Jack be able to breeze through life easily, not for my sake, but for his own?  Why should he have to deal with neurological conditions that put him at odds with a world that is not designed for his needs?  If I thought that God made Jack the way he is on purpose, I might would be angry with Him.  Why my son?  That's not a pity cry, either, because that statement is not about me.  Why him?  Why should he have to work so much harder than everyone else to do the things that other kids do so easily?

I don't want to be angry with God for the challenges that Jack faces and the diagnoses that he has.  Rather, in order for me to maintain my peace with God, I have to believe that not everything is within God's control.  I have to believe that genetic differences are not something that God controls like someone manipulating a roll of the dice.  I have to believe that it was out of His control.

Also, I take issue with the fact that "I can handle this" or "I'm strong enough".  Sure, I "handle this" day in and day out because I have to handle it.  Parents with multiples can surely appreciate that statement, as I know many of you also get comments from well-meaning people who ponder just how you "handle it".  Well, as I'm sure you'd agree, we handle it because we have to handle it.  We don't have a choice.

And you would, too, if you were in my position.  It's nothing to do with strength and everything to do with willpower.  If you had a 5-mile walk home, you'd walk it.  It wouldn't be easy.  You might have to will yourself to take one step after another, but you'd do it.  You'd do it because you have to - not because you are a stellar athlete.

If the decision to give me a special needs child is because I have some type of inner strength, I'd like to argue that God might have been gravely mistaken.  There are days in which it is all I can do to hold it together.  There are days in which it's too much for me.  I keep taking one step after the other for several reasons - hope that tomorrow is a brighter day, willpower, and most importantly, Jack.

In order for me to maintain any resemblance of faith, I have to believe in these things.  Really, no one can prove any of these assertions, so like a child believing in Santa Claus, I have to believe what brings me joy and peace until someone gives me evidence to the contrary.  I have to believe that God is there protecting Jack in any way he can.  I do believe that there is probably a special place in God's heart for special children, as there is in the hearts of so many.  Well, I'd like to think so, anyway.

I will say that having a special needs child has led me to prayer more than I ever did before.  I guess that I never saw much of a reason to pray for myself, but I have daily reasons to pray for Jack.  I pray for his health, his progress, and that he continues to get what he needs to grow and develop.

I would caution people who try with the best intentions to say something - anything - to make the parents of a special needs child feel better.  Saying something that seems so benign  - that you might think would be a compliment to the strength of a parent - might not convey the message you wish to deliver.

I urge people who want to give comfort to a special needs family to do so in two ways.  First, tell that family that you're there if you need them.  Don't be so open-ended about it, either.  Many special needs parents don't want to ask for help, but they'll take help if it's offered.  Offer to drive carpool, or watch the family's NT kids so that mom or dad has time to take their SN child to therapy.  Or, better yet, offer to have the family over for a playdate or dinner.  Don't exclude them.

Second, ask about the child's condition.  Ask what you can do when the family comes to your house to make it a more comfortable experience for their special needs child.  Allow yourself to be educated about just what that child's condition is and isn't so that you can further educate others and spread truth.

As with so many things, don't assume that it gives someone comfort to hear that God gave them a special needs child for a reason.  Some might find comfort in that statement, but others will not.  Ultimately, what is much more helpful is a dose of compassion and understanding.

Tuesday, August 21, 2012

He Won't Bother Us

Dear Well-Meaning Family Member, Friend, or Acquaintance:

I appreciate your invitation to join you for a dinner out/family gathering/birthday party with my son.  When I voiced some brief concerns and ideas about how to make the night easier for Jack, you responded in the following way:

"Don't worry; he won't bother me/us if he screams or gets upset!"

While I appreciate that you are trying to be understanding of Jack's autism and the fact that certain situations cause Jack to have behaviors that are - shall we say - less than desirable, I feel that you maybe missed the point of my concerns.

I have a slight confession to make.  While I certainly don't want him to ruin anyone's good time, my primary concern is for Jack and Jack alone.  I learned long ago that the world will think what they will about my boy; there is no changing that.  My concern, therefore, is for him.

You see, when Jack screams, or cries, or flails, or runs for the door, it is not just because he wants to be disruptive and bother you or your guests.  Rather, it is because there is something in that room that bothers him.  Maybe it is the noise level.  Maybe it is the activity going on about the room.  Maybe it is some trigger that I cannot immediately identify, but the point is that he is in distress.  He feels tremendous anxiety already by the time that the tears flow.

Think about the times when you have anxiety.  Now, think about the times when your anxiety is so high that you feel a fight or flight response.  How does that make you feel?  You feel powerless.  Scared.  Unable to think about anything else.  When Jack begins to scream or cry or flail or run, he feels the same way, except his anxiety seems ongoing.  He is on high alert all the time.

So, while I appreciate that Jack's screams won't bother you, they bother me.  They bother me because I know that something is bothering him.  What he cannot communicate in words, his actions speak volumes.  His humming is a sign that he's getting overwhelmed.  So is his hand-flapping that you think looks so adorable.  So is a marked decrease in eye contact and eye regard.  You see, for Jack these signals are the non-verbal cues he gives that he feels stress.  Just as you do not like to feel stress, so do I wish the same for Jack.  I don't want him to feel stressed out.

Also, please know that the things we do, like putting headphones on Jack, aren't to stop him from having a meltdown.  They are to prevent that meltdown from ever occurring.  So, if Jack is happy, it is because the ounce of prevention we take is working.  It doesn't mean that Jack doesn't need that ounce of prevention.  So, when I start to put the headphones on Jack before entering and you comment that Jack doesn't seem upset, it's because I do everything I can to keep him from feeling overwhelmed.  If he seems happy, I'm doing everything right.

Please know that I don't duck out of events early or decline invitations just because I don't want to come.  I don't use my child as an excuse like that, even though you think I do - and I know you do, because occasionally you've told me not to use Jack as an excuse.  Rather, I do it because we don't have the energy or because the previous week has been a battle in our house - a battle that you don't see and of which I don't share every detail - and placing one more demand on my angel is simply unfair to him.  He's worked so hard and he deserves a break, too.

I hope you can understand why we have to modify and/or decline some invitations.  I have to be my baby's voice when he cannot speak for himself.  It's nothing against you, your event, or anything else - it's just what we have to do to survive.

Regards,

Reinventing Mommy

Friday, August 17, 2012

Floortime and Being The Most Interesting Thing

I haven't done a Floortime post in a while and I've gotten a lot of questions as of late about Floortime, so I thought that I'd talk about some of the Floortime strategies we're using right now and where we are with Floortime.

I think that one very common misconception about kids on the autism spectrum is that they don't form close bonds with primary caregivers.  That is absolutely untrue.  In fact, one of the things that I particularly like about the new DSM-5 criteria for autism is that it recognizes that children on the spectrum can (and do!) form close bonds with primary caregivers.

Here's the thing, though - our kids don't interact with us the way that NT children do.  Once you drop that expectation of interacting with your child on your terms and open your heart and mind to the concept of "Whatever it takes!", then you can start to see the relationship blossom.

One big premise of Floortime is that you - and by you, I mean parents and caregivers - are your child's first and most important playmate.  Your child needs to be able to form a connection with you before relationships can form with peers.  Think about a NT child.  A baby or young toddler wants Mommy's attention.  This happens long before other children are appealing as playmates.  So, before you expect your child to form friendships and enter the world of peer-to-peer social interaction, he or she needs to have a strong relationship with you.

This is where we are right now, and we're making some good progress.  Sure, Jack would much rather play with magnetic letters or his iPad, but I simply insert myself into his play.  I lost the expectation that we would be doing elaborate imaginary play long ago.  I consider myself lucky if I can get him to follow a model for simple pretend play - like rolling a car back and forth on a table or hugging a doll with prompting - but I don't push it, either.  I introduce it if he seems receptive.

For those of you familiar with Greenspan's Developmental Stages, this places us at stage 2 - Intimacy, Engagement, & Falling in Love (for more about it - read --> here <--).

So, if Jack's leading the way with our Floortime interactions, what am I doing to try to foster engagement?  Am I just being lead along like a blind puppet in all of the stimmy fun?

Of course not.

Instead, I take his lead, but I try to insert myself into his play in a way that both engages his interest and leads him to interact back, whether it be with a word or two or even just a smile.  First, I get into all of Jack's most favored obsessions, and if I don't really "get into it", then I fake it.  And I've gotten to where I can fake it really well.  Jack's favorite things are Super Why! and magnetic letters, so guess what?  My favorite things are not Super Why! and magnetic letters!  Is it what I imagined my interactions with my son to resemble?  Absolutely not.  Am I willing to do anything - to love anything - to connect with my boy?  You betcha.  Again, it's about dropping preconceived notions about what is and is not play and what is and is not "appropriate" for your child's age.

Second, I make everything very over the top.  I bump up the emotions - called your "affect" in the language of DIR/Floortime - whenever I talk to or interact with Jack.  For children on the spectrum, it can be difficult for them to interpret and understand the various emotions that others express.  In addition, many kids on the spectrum - mine included - struggle with being able to attend to an adult and pay attention to what they are doing.  To help them with this, bump up your affect.  Is something funny?  Fall over laughing - literally!  Are you sad that they aren't playing with you?  Pretend to cry.  Did your little one do something to make you happy?  Smile like you've never smiled before!  Smile like you are trying to cram a 1/2-lb. cheeseburger in your mouth.

You have to get up in your kid's face.  You need to insert yourself in the stims and scripts.  You need to make yourself the most over-the-top thing your kid will see in a world full of distractions.  You need to be the most interesting thing in the room.

Third, stop caring what other people think of you.  Anywhere and everywhere is a good place for a Floortime interaction.  Be over-the-top and silly, even in public!  I am an awful singer, but I sing all the time when Jack is with me.  I sing on the way to the car - "We walk and walk and walk..." - and everywhere else in between.  Jack hates it when I sing, but you know what?  He has to do something to get me to stop.  He has to say "No!" or I prompt him to say "No singing".  That's an interaction.

I've also had to drop to the ground where we are - frequently - to rock or console Jack.  He needs to wear headphones in many stores, but it's what he needs.  Sure, we look silly - I look silly - with some of my interactions with him, but that's what I have to do.  I'd much rather have my child like me than have the admiration of a stranger at the grocery store.

Fourth, I have redefined my preconceived notions of the meaning of the word "interaction".  What is an interaction?  Well, you might define it as a back-and-forth exchange in which both parties are taking something away from it, like a conversation.

My definition of "interaction" is a bit more loose.  I consider a successful interaction - called a "circle of communication" in Floortime jargon - to be me doing something and Jack reacting.  So, our interactions don't always look like yours might.  Here's an example - Jack scripts from Super Why!...a lot.  As in, all the time.  I get to where I memorize entire episodes of Super Why! just from hearing them so often.  So, what do you do with a kid that scripts?  Or stims?  Copy them, of course!  I repeat the scripts as he goes through them or, if he's flapping his hands, I flap along with him.  Usually, both illicit some kind of reaction.

And that's what I want - a reaction.  It's about the engagement, the connection, and being a part of the same world, and not necessarily about anything else in that exact moment.  There are times in the day to focus on language, motor skills, cognitive skills, etc., but in that moment my only concern is the interaction.  Appropriate or inappropriate as that reaction might be, I'm going for engagement.

Once the engagement is natural, frequent, and your child is seeking you out for attention, you can add to it, but teaching children with disorders of relating, communicating, and thinking that the interaction is the reward is the most important lesson.  You want your child to want to be with you in a shared world of interaction.

---

As you may have guessed, I'm a big - BIG - proponent of DIR/Floortime.  I love it, I breathe it, and it is truly a lifestyle in our home.  For more information about DIR/Floortime, I highly recommend Engaging Autism by Stanley Greenspan or go to the DIR/Floortime website by clicking --> here <--.

And don't think that Floortime is only good for kids with special needs!  Every child can benefit from Floortime, or from joining in with a friend or sibling's Floortime play!  NT kids are the BEST Floortime players!

Thursday, August 16, 2012

Numbers

I'm over at the SPD Blogger Network today!

We all have them.  Files upon files of paperwork and documentation of our children's delays.  In the end, do those numbers really define who they are?  Please join me over there and voice your opinion:

http://www.spdbloggernetwork.com/2012/08/16/numbers/

Wednesday, August 15, 2012

The Big - Yet Small - "Neeyo" Bus

In the sunny ATL, most school districts are now back in session.  Jack's is no different; his first day back was Monday.  This new year was bringing some notable changes, the first of which would be riding the school bus.

I know that I said that I wasn't going to put Jack on the bus.  I railed about how I wanted Jack to have some historical recall - which may be a few years off - before putting him on the bus.  There are two compelling reasons - both related to each other - that led me to put my 3.5 year old baby boy on a big yellow bus this year, even though that "big" bus is actually pretty darned small.

The first reason - breakfast.  The other kids in Jack's class eat breakfast at school.  By dropping Jack off right before school started, he was missing an extra 30 minutes of social skills and instruction that the other kids were getting.

The second reason - feeding goals.  Jack has several feeding goals in his IEP.  If I drove him to school, I would have to take him after carpool ended (the other parents can be real assholes about the fact that I have to stop my car, get out, unstrap my child, and walk him to his classroom since, ya know, he's 3.5).  That means that he misses breakfast and the only opportunity to work on feeding goals happens at snack.  Going for breakfast gives him one more opportunity to work on those oh-so-important feeding goals.

So, on the heels of a night where my little boy didn't go to sleep until nearly 10:00 PM (thank you, melatonin, for picking the worst night no NOT WORK), I woke my baby up at 6:30 AM - 20 minutes before the bus would arrive.  Since he doesn't need to eat breakfast before school anymore, I can let him sleep until the last minute.

He wasn't thrilled about being woken up by any means.  He screamed.  He railed, "All done school!" - a refrain I have heard every morning all summer long.  Yep, school may not be his favorite.  We donned our cute baby blue polo shirt and plaid shorts and put on our new pair of Star Wars light-up sneakers.  In the preschooler realm, he was looking like a rock-star.

All except for the tears streaming down his face.

Five minutes before the bus was due to arrive, we walked - or rather, I carried him - out to the end of the driveway to wait for the bus driver, Ms. P.  He was nervous.  We tried in vain to take a picture of Jack looking at the camera on his first day of school.  No dice with looking at the camera, so we got several shots of him looking into the distance with an anxious look on his face.

Right on cue, Ms. P pulls up in her bus.  I asked Jack, "What color is the bus?"  He chirped with a quick response - "Neeyo!" - which is his word for yellow.  When the bus stopped and we approached, the flailing and tears began.  Ms. P asked if I wanted to come on to the bus to help him get settled, so I did.  Good thing, too, because getting him buckled in to the car seat was a team effort.

Before I got off the bus, I planted a kiss firmly on his forehead and looked down at my angel.  He was bawling - tears streaming down his cheeks - as he sat helpless in that car seat.  Ms. P gave me a comforting "It'll be okay" as I walked down the aisle and off the bus.

Brian and I stood at the end of the driveway, barely able to see Jack's head peeking up above the window on the bus.  He was still sobbing.  We waved as the bus pulled away with our sweet little boy, off to start the first day of this new school year.

I walked into our garage and leaned against the wall for a moment.  That was when my tears flowed.  Tears for all of the things that my little baby has to do - like tackle the school bus - at an age much younger than his peers will.  I wished that I could just explain it all to him, that I could tell him that it was all okay.  That I could explain what the bus was about, but he just doesn't understand.  It's just all so scary for him.

I know that with each day that goes by, riding on the bus will become more and more a part of the routine.  It's still hard that we've moved away from that glorious comfort level that Jack seemed to experience during ESY, but it's my hope that with 170+ days of school left, we'll get back there.

How has the start of the school year gone for you and your families?  How have your kiddos dealt with the changes?

---

UPDATE:  Jack got on the bus all by himself - with the exception of needing assistance climbing the stairs - and walked with the bus driver all the way to his seat without me needing to get on!  It's so nice to know that he's doing better with it.

Tuesday, August 14, 2012

Shell-Shocked

After last week's choking incident and yesterday's post, I began to reflect on feedback I had heard from other autism moms and mom bloggers.  You see, I simply could not shake the fear.  Each time I fed Jack, each time I've placed him on the bus knowing that he'll be fed at school, and each time I handed him over to a therapist for a feeding session, I felt my blood pressure rise, my heart rate increase, and the anxiety swept over me.

It's not the only time that I've felt shell-shocked like that, but it is definitely the most fear I have ever felt with regards to my little boy.  Hell, I didn't feel this much fear when I first heard the word "autism" used as a diagnosis with regards to my little guy.  That fear that my boy might choke just has consumed me.

There have been other times, though.  When my boy's screams escalate in a public place and he loses control, I begin to feel the fight-or-flight (most often, flight) response.  I hear an Emergency Broadcast System alert on TV and I jump right along with my boy.  I'm more jumpy.  I feel constant anxiety.  There is always something to worry about.

The anxiety with feeding Jack has been the worst.  Before, I felt constant anxiety about the amount of vomiting and Jack's declining weight percentiles.  I felt anxious with every meal of Jack's for nearly 2 straight years.  Just as the fear had eased as his vomiting decreased, I now have to worry about choking.

Then, I stumble upon a post from a mom blogger about PTSD and autism (to read MOM-NOS's post over at the Washington Times, click --> here <--), which I had read before, and I thought to myself, Holy S#!&!  She's right!

Autism does tend to rock your world.  I know other autism mamas who, like me, will jump at the loud noises that trigger reactions in their children.  We don't do it because we fear that noise.  We do it because we fear the reaction it will produce.  Like Pavlovian dogs, we've been conditioned to react to a stimulus that, in and of itself, should cause us to not react.  Not unlike our children, we remain hyper-vigilant to a world that we know will bombard our kids at any moment.

Now, I'm not about self-diagnosis by any means (and you shouldn't be, either - leave the alphabet soup to the professionals), but I think that many of us can say that having a child with autism changes you.  You do feel like you're riding a constant wave of anxiety.  You don't feel like you can fully relax, or if you're like me, you wait for the other shoe to drop when you do feel like you can relax.  I keep busy - crazy busy - thinking that productivity can counteract any fears I have.

It never does.

I imagine that the constant anxiety, no matter how well we all hide it, can't be good for any of us.  Stress shortens lives, contributes to cardiovascular problems, and generally doesn't feel great.

Full disclosure here - I will say that I have taken medication in the past for both anxiety and a panic disorder.  I used to have panic attacks regularly.  I was in college and it was debilitating.  Luckily, it's been a very long time since I've had one, but I can say with all honesty that there are medications that can help if you have a problem with anxiety.  Ask your doctor if you are feeling overwhelmed by your anxiety and stress.  Believe me, you're not the first or the only special needs parent to feel a bit overwhelmed by the realities you face.

I think that many of us special needs moms (and dads - can't forget the dads) feel extra stress, strain, and  hell, maybe even a touch of PTSD.  Like I preach so often, take care of you, too.  The stress is real - don't let anyone tell you it's not - and it does affect your life.  It's okay to step up occasionally and say, "This is a lot for me to handle.  I need to focus on me, too."  You can't take care of the never-ending tasks of special needs parenting unless you are as whole as you possibly can be.

So, for those of you who feel a little shell-shocked, like me, know that you're not alone.  I'd argue that there are many of us anxious, jumpy, sleep-deprived, over-worked mamas out there who just have to try to tread water some days.  

It's okay to admit that you're not Super Woman.  In fact, it's probably healthier to do so.  It's also okay to do what you need to take care of you.

---

Guys and gals out there, I'm serious - if you are feeling overwhelmed and stressed out, get help.  Delegate tasks to other people.  Let the housework go.  Ask a family member or friend to watch your kid for a while so you can nap.  Don't be afraid to talk to a doctor.  Don't feel like you ever have to fight this battle alone.  Get yourself some support.

Visit the American Psychological Association (http://www.apa.org/topics/index.aspx) for more information about mental health topics, including anxiety and stress.

Monday, August 13, 2012

Breathless

It was Friday - the last official day of summer vacation.  Upon us lay the weekend and the first school night of 2012-2013 school year.

The day went pretty smoothly considering the demands placed on Jack.  The morning began with Open House at school, which really was less of discovering who his teacher is - he has the same PSE teacher for the next 2 years - and more about getting him used to the idea of school again and writing checks to the PTA.  With headphones in tow - which were very necessary due to the crowds - we went to Jack's school and got everything sorted out.

Next, it was home for me and Jack and work for Brian, as I vowed to relish every delicious moment of my final day of the summer with my baby all to myself.  I had cancelled Jack's special instructor for the day to allow us time to go to Open House without worrying about a schedule.  The rest of the day was open, and I was going to enjoy every moment of Jack being only mine.

For lunch, we took a car ride to a drive-thru for a recent favorite of Jack's - French fries.  Yes, it's not the healthiest food on Earth, but my child is a 29-lb. 3-year old.  He could stand to put on some weight. As always, I also ordered chicken nuggets, hopeful to sneak in a bite of protein in between little bites of fries.

We got home and Jack accepted the fries with gusto.  I was fortunate to get almost 2 whole chicken nuggets - cut into bite-sized pieces - down him in the process.  All-in-all, I called it a successful lunch.  Before we went upstairs, I checked to see that he had swallowed the last of his food.  Not seeing anything, I put his cup away and carried my angel up for his nap.

Our naptime routine is the same every day.  He lays on the floor - Jack's too big for the changing table these days - and I change his diaper.  Here in the South, it's too hot for Jack to sleep in both his clothes and his SleepSack, so I let him sleep in his diaper.  I then lay his red SleepSack - and it always has to be the red one, never the blue - out on the floor, as I wait for him to flop down on to it, burying his face in the well-worn fleece fabric.  I rub his back as he settles down.

Once we got to this stage, Jack sits up and I see a look on his face.  I know this look; he's struggling and he's about to throw up.  A little vomit just doesn't phase me after 3.5 years of this, so I hold my hands out waiting to catch whatever's coming.

Only nothing happens.  His face is turning red.  He seems like he's going to gag, but nothing's happening.  I look in his mouth and see it - a piece of chicken is still there.

My heart begins racing.  Please, baby, just throw it up!  Get it out!  Nothing.  The look in his eyes tells me that he's on the verge of this chicken slipping down his throat.  I turn him on to his stomach and thump his back, trying to get the chicken a little closer to his mouth.  COUGH!  It works, but it doesn't come up and he's still coughing.  I can see the chicken, just within reach in his mouth, and terror that it will slip further back towards his throat begins to flood me.  I need to get this out with the only instrument I have available, my finger, before he chokes again.

I reach in and flick the chicken towards me.  It lands - plop! - right in my lap, just as Jack clamps down on my index finger.  Now, for a child with oral-motor weakness, my kid can do some serious damage.  I tried to coax him to open his mouth - Please, baby, open!  You're hurting Mommy!  Ouch! - but the message obviously isn't getting through.  The problem with someone who doesn't read emotions well is that they can be completely unaware that someone is in any pain.  I tried to use my other finger to gently pry his mouth open as I pulled my trapped hand slightly, hoping he'd get the idea.  He didn't.  He just clamped down harder with each movement of my hand.  Finally, I raised my voice - Jack, you're hurting Mommy.  No bite!

Nothing.  Jack!  NO BITE!

No response.  JACK!  NO!  NO BITE!  

He finally releases me.  Instinctually, I grab the chicken out of my lap, though I'm fairly confident he wouldn't put it back in his mouth.  I look down at my finger, which is gnarled and turning an interesting shade of purple at each tooth impression.  Being upstairs, I run to Jack's bathroom and fling the chicken in the toilet, flushing away the cause of this whole mess.  I'm shaking from fear with what just took place in a time span of about 30 seconds.

I hear a pitter-patter behind me.  It's Jack.  He's standing there, still red-faced, and a bit dazed, as though he's terribly confused as to what just happened.  After a few moments, his face melts into a sadness as he begins to cry.  While he's wailing, I look to be sure that no more food is in his mouth.  It's clear.  I reach for Jack and, like usual when he's very upset, he pushes away.

Then he throws up.  The gag and throw up I would have welcomed just moments before is now all over me and the carpet.  I clean the floor and myself up and wipe Jack's face before picking him up to carry him back to his room.  I put him in his SleepSack and zip it up, my hands still shaking.  I sit on the floor - he doesn't like me to rock him in his glider - and gently sway him back and forth for a few moments until I feel the heaves of his chest decrease as his tears subside.  We stay that way for several more minutes, as the fear of losing something as precious as my angel makes me reluctant to leave.

Eventually, I put him in his crib and left after giving him a kiss.  Closing the door, I heard the sweet sound of him babbling away as I dropped to the ground and sobbed into my hands.

I had never - never - seen such a serious situation with my baby and food.  The thought that he had been choking was gripping me with fear.  Never mind that my finger was starting to resemble a sausage link, I was consumed with the "what ifs".  What if patting his back hadn't dislodged it?  What if his mouth was clinched tight and I couldn't have swept the chicken out?  What if it had gone down his windpipe?  I didn't want to allow myself those thoughts, but they kept flooding my head.

It was an incident that was all but forgotten by Jack within seconds - if he had been aware of any gravity of the situation at all - but it was one that would continue to haunt me, as there is nothing more precious than my sweet angel.  When he woke, I would hug him a little tighter, even though he would resist, and steal one more kiss than I normally would.  I would also be a little more careful, and I'm sure that the situation would trigger my OCD a bit as I would have to obsessively check and double-check to be sure that he had swallowed his food.  Just one more "lesson" in living with a child with feeding problems, but one that I would not soon forget.

Friday, August 10, 2012

Comfortably Numb

There is no pain you are receding
The distant ship's smoke on the horizon
You are only coming through in waves
Your lips move but I can't hear what you're saying

When I was a child
I caught a fleeting glimpse
Out of the corner of my eye

I turned to look but it was gone
I cannot put my finger on it now
The child has grown
The dream has gone

I have become comfortably numb.

~ Pink Floyd, The Wall, "Comfortably Numb"

---

The lyrics from my favorite song from high school ring true at the most poignant of times - that feeling of having to shut down, to hold on to that numbness in order to keep the sadness at bay.  Of course, I don't refer to a chemical numbness, as is implied through one angle of the lyrics of this classic from The Wall.

And yes, I was - and still am - a Pink Floyd fan.  Yes, my basement does have the posters to prove it.  My college dorm room was adorned with a poster of a section of the Berlin Wall, with graffiti that read, "Mother - should I trust the government?"  I was one of those kinds of people.

It's a sad fact of life that sometimes we put up barriers to keep ourselves intact.  Sometimes, we get so used to the day-to-day battle that, eventually, it no longer seems like a battle.  It's not that the battle changed or lessened, but that we have conditioned ourselves to no longer buckle under it's strain.

There are times lately when I find myself not feeling that same kick in the gut when my boy screams.  It's not that the screams have lessened, but that I am simply getting used to it.  I don't want to get used to it!  I don't want to ever feel like that when it comes to my baby's pain, but I think it's just an automatic response.

Jack is, as always, still having the dreaded tactile issues that rear their ugly head during bath time.  He hates water on his face.  He hates soap on his face.  He hates the feeling of his towel.  He hates being held while we dry him off.  He hates having his hair combed.  The specific offenses of each of these events and the precipitating trigger are, to us, still largely unknown.  We know he doesn't like any of it, though.  He fusses.  He cries.  He screams and flails.

And I'm getting used to it...and that is what I hate.

I don't want to feel numb like this, but I also know that without a bit of numbness the battering of it all will eventually wear me down even more.  Jack has to take a bath, or be cleaned in some manner, each day.  This is not optional.  We can tweak it as much as we can to try to eliminate the factors that drive Jack over the edge, but ultimately he still must get a bath.  If we cannot figure out a way to give him a bath without offending his senses, we'll simply have to shove on with the process without his consent.  I hate that, too.

In a way, I don't want to be used to this. Don't want to feel like the seasoned veteran, even though I still consider myself far from it.

I feel like I have to go to some inner place.  I cannot let him see me cry, even though he doesn't seem to understand the emotions of others, like crying.  He now has a social smile, but he really doesn't understand pain and sadness, or happiness that isn't expressed in an over-the-top way with a smile.

Most importantly, I feel like I can't let others see me cry.  It's led many to believe me to be a very emotionless person, even though I'm not.

I guess I also don't want to give people the impression that I can't handle this, or that I'm not handling this.  I guess I see tears as weakness.  It's an idea I've always held, as misguided as that may be.

Jack's special instructor often comments how level-headed and even-keeled I remain during a meltdown.  I tend to brush it off, saying that I've bourn witness to a meltdown or two in my days.  She always says it's more than that, like I'm trying to deny that it upsets me by remaining so stoic.

Maybe I am.  I guess I don't know what would be accomplished by reacting - by letting my emotions override the fact I'm needed as a rock, a monitor, and a steadfast comfort to my boy.  Best that those emotions don't occur then, or best yet that I push them aside.

Do you ever feel this way?  Do you ever catch yourself becoming numb to the pain of the everyday things that our angels go through?  Do you think that it is good to let the emotions flow, or do you chose to keep them hidden away?

I'm fairly confident that there are no right or wrong answers here, simply a group of parents doing all that we can to keep placing one foot in front of the other.

Thursday, August 9, 2012

Special Needs Explained: Scripting

Tell me that you're not hearing him say
"How you doin'?" in his Joey voice.
You can't, can you?
It's been a while since I've done one of these posts.  So often, I forget that the language and terminology that seems so intrenched in the special needs world is - at times - foreign to everyone else.  I tell people that Jack is "scripting" and I imagine that everyone else knows what the hell I'm talking about.

Allow me to clarify for you what I mean when I say that Jack is scripting.  When you think of speech and language, there is either spontaneous speech, which is language you use off the top of your head, or echolalic speech, which is where you are repeating what you have heard.  Echolalia can either be immediate - like when your 5-year old starts repeating everything his older sibling says just to get a rise out of him - or delayed - like when you say goodbye to someone by saying, "Hasta la vista, baby."

Many people think of echolalia as being a feature of autism, and you'd be right.  Kids on the spectrum - Jack included - tend towards echolalic speech.

Here's the thing about echolalia, though - we all do it.  If your husband walks in and you look towards him saying in your best Joey-from-Friends voice, "How you doin'?", then you have just spouted off a little snippet of echolalia.  Or is that just me?

I'm guessing it's probably not.  I just may pick the cheesier lines to script.

The difference is that Jack does it all the time.  Rather than using words in a functional way, he scripts.  It becomes a sort of stim for him, and I suspect that the familiarity of these lines - repeated over and over - gives him some degree of comfort in a world that feels so wholly out of his control.  As a result, I have entire episodes of Super Why! memorized at this point, and it's not because I just love watching Super Why!.  It's because he repeats them to himself all day long.  That echolalia - which is the fancy term for it - is scripting.

There are other times that Jack will resort to scripting, other than just for comfort.  If he is anticipating an event in his schedule - like bathtime - he'll start repeating the phrase that he hears Brian and I say every night around that time.  He'll repeat "What time is it?  What time is it?  What time is it?  What time is it?"  The same with greetings.  He had gotten better about greeting people using "Hi" plus their name, thanks in part to his ESY para-pro who absolutely drilled it into him over the summer.  Now, he's slid back a little into his usual habit, which is greeting people with what they will say to him - "Hi Jack!"

Another favorite of Jack's is to repeat the opening titles of Super Why!, and I'm not talking about the theme song.  I'm talking about all of the gobbly-gook that they say before that, when they list off all of the "proud supporters of PBS Kids and Super Why!"

I can tell you with all certainty that both Chuck E. Cheese and ABCMouse.com sponsor Super Why! religiously.

Really, while scripting isn't ideal, but for a kid who wasn't talking this time last year, I'll take it.  We don't encourage it in our house.  We don't try to egg him on, but I don't try to silence him, either.  I feel that the meaningful language just might - it must - piggyback on the non-functional scripting.  Honestly, if he needs a little comfort in his life, a little scripting here and there isn't horrible.  He's trying to make sense of the world.  I try not to let the constant refrains of a few Super Why! lines drive me completely out of my mind.

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If you ever have an idea for a "Special Needs Explained" post, or if there is something you'd like a special needs mom to take a stab at explaining, please leave a suggestion!  It's all about awareness and education, folks!

Wednesday, August 8, 2012

Different, Not Less

Discrimination.  It happens to special needs parents.  I get that.  There is a lot of misunderstanding out there about not just autism, but all disabilities.  When children exhibit behaviors that people do not understand, they tend to react negatively.

We've experienced it ourselves.  I remember taking Jack to the library for story time about a year ago.  The librarian, an older woman, made it very clear that if Jack could not sit still and stop screaming that I needed to take him and leave.  I tried to explain that it takes him a while to get used to new situations, and that this might be how he would act for a few weeks.  She didn't care; Jack was disrupting everyone else.  I get that other people have a right to enjoy story time, but Jack will never get that opportunity without a few weeks of unpleasantness.  I was given no choice; we were no longer welcome, so we left.

I've actually had a couple of Jack's therapists tell me that I could come wave a copy of the Americans with Disabilities Act at that librarian, but I chose not to do so.  I made the decision that I wasn't going to force them to reluctantly include Jack.  I wanted Jack in an environment where people wanted him there.  Forcing his presence wasn't going to change any attitudes.  It might only create resentment.  Since then, I've opted for activities geared towards children with special needs, as these environments cater more to his needs and are far more welcoming of his differences.

We've gotten stares, comments, and other random bits of nastiness here and there, but nothing - nothing - compares to this (click on the link to read the full article):

Young Man Denied a Heart Transplant Because He's Autistic

Did you read that?  The family of a 23-year old man diagnosed with PDD-NOS is alleging - and they have a letter from the hospital to back it up - that their son is being denied a heart transplant due to his psychiatric issues, autism, and the unknown effects that the needed medications would have on his behavior.

What?!?  You're concerned that psychiatric issues (he has a mood disorder, which is pretty common with some autistic individuals), behavior issues (again, tied into his autism), and his autism will make him not a good candidate for transplantation?  So, in essence, it's because of his autism?  Are you f@#*ing kidding me?!?

I can tell you this - I'm guaranteeing that this man's family would take any behavioral issue you could throw at them just as long as their son is alive.  I know I would.

Also, deficits in self-help skills and independence should not exclude someone from receiving a donated organ.  So what if someone needs help remembering to take their medication?  Us parents are used to doing that for our special needs kids.  This is what we do.  We create back-up systems and plan for our children as best as we can.  Just because my son, or yours, or this young man needs assistance with daily living tasks does not mean that we should deny him the opportunity to receive a transplant.

This same scenario came up earlier this year with a little girl named Amelia (see my post on sweet little Amelia --> here <--).  Luckily, she was approved to receive a kidney donated by her mother when her kidney function declined to a certain point, but why do stories like this need to get to this point?  Why must we get to a position where parents have to beg and plead for someone to give their child a chance at life?

Who are we as a society to determine what does and does not waste a gift as precious as a donated organ?  Sure, there has to be some decisions made as to who can truly benefit from a transplant, but I'm thinking more in terms of surviving the transplant surgery or contraindicating medical conditions.  This would be the case with any medical procedure - there are some procedures that would simply do more harm than good in certain circumstances.  Who are we to say that someone is more or less worthy of life based on a disability?  Does a lack of independence or a cognitive impairment make someone less worthy of a transplant?  Do those factors indicate that an organ would be wasted on them?

I'd argue not.  We, as a society, need to send a clear message that we will protect and respect even the most vulnerable members of our communities.  Disabilities are not something that diminishes the worth of a person.  If you don't believe me, ask another parent of a special needs child.

Our children are different, not less.

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Please consider signing the following petition.  We have witnessed over and over again the power of the individuals - linked together through technology - to enact real change.  Thank you.

Help my autistic son get a life-saving heart transplant at Change.org

Tuesday, August 7, 2012

Collecting Doctors

Now, if someone can direct towards
Dr. House's practice, I'll be a very happy
mama indeed.
Our special needs angels seem to collect doctors, therapists, and other medical personnel.  I know that my baby alone has a rather sizable collection of 4 doctors and 7 therapists (and we're about to gain 2 more - not including school therapists).

If there is one piece of advice I could give every new special needs mama, it would be this - you need doctors, specialists, and therapists that will be an asset, not a hinderance.

I've spoken before about Jack's therapy team.  I cannot say enough good things about each one of them - and it's not just because I picked them.  It's because each one is a vital component of my little boy's life.  And they care.  They truly care.

As for Dr. DP, it was a blessed coincidence that we stumbled upon him.  We could have gone to the larger autism center nearby, but they had a very long waiting list.  When I called Dr. DP's office, this office manager simply put me at ease.  She introduced me to the world of special needs insurance claims.  She taught me how to navigate it all.  The social worker fit us in sooner, just so that Jack could get what he needed.  It felt like the right place to be.  Dr. DP himself is one of the most reassuring, intelligent, and caring physicians I've ever encountered.  He just gets Jack.

Even some of our other specialists, like Jack's GI and audiologist, are so incredibly in-tune to the needs of a special needs child that it makes me breathe a little easier.  We all stay on the same page, and I trust these doctors to not put my baby through any unnecessary procedures.

There are several qualities that I would say definitely embody a good doctor or therapist.  Compassion. Dedication - both to your child and your family.  Perseverance.  Knowledge about their chosen field.  A desire to see patients get exactly the care they need.

We've also had experiences with a doctor or two that have been less than ideal.  I'd also say that there are several additional things that you should consider when looking at new doctors or therapists:

  • Accessibility.  As the parent of a special needs child, you will - in all likelihood - be contacting or visiting your child's doctor more than the mom of a NT child.  In order to avoid frustration, try to find a doctor who is easily accessible to you whenever you need her.  Calling and always being routed to a "gatekeeper" nurse prior to your doctor receiving the message is not the definition of accessibility.  If you call and leave a message for your child's doctor, you should be able to feel confident that it's going to your child's doctor - not a triage nurse.
  • Size of the Practice.  The larger the practice, the larger the chances that your child will be lost in the shuffle.  If you want to have a good relationship with your physician in which he or she knows your child (without having to pull up a chart each time), then look for a smaller practice.
  • Office Management.  The biggest problems I've had with one particular doctor's office we use have been with the way the office ran.  Really, this isn't an issue with the doctor themselves - I find that most doctors are very hands-off with the management of their practice and want to keep it that way.  If you call and they can't find a record, that's a problem.  If you have frequent billing issues, that's a problem.  If you call and no one seems to know how to help you (or they are unwilling to take the effort to do so), then that is another problem.  It may sound minor, but office management issues can make you want to run from even the best of doctors.  On the other hand, a great office staff - like at Dr. DP's office - can help sell you on a practice.
  • Turn-Around Time.  This will primarily be a concern with a primary care physician, who will be the one to churn out a lot of the paperwork you'll need for insurance/school purposes.  Even though your child's primary doctor did not diagnose your child, most insurance companies will still want documentation to come from him or her.  If it takes 3-4 weeks to get paperwork back, that's a problem.  A week is more reasonable.
The other thing I always recommend to people with special needs children is to remember what doctors specialize in and don't expect more out of them.  This primarily pertains to general practitioners.  Once you suspect that your child has some special needs, find a specialist who is an expert in treating your child's condition.  Continue to see that person over the years for developmental issues, if you can.  I would actually look for a practice that will coordinate your child's care, as some will focus on diagnosis only, but check with your insurance to see if frequent care management visits are a covered medical service as not all policies will allow you to do this.

In our family, for example, we only see our general pediatrician for the usual "kid" stuff - ear infections, shots, yearly physicals, etc.  Any developmental issues beyond that go straight to Dr. DP.  I know that our general pediatrician doesn't specialize in developmental issues, so I don't ask her to make those kinds of treatment decisions.  Similarly, we bypass her for hearing tests (she's not an audiologist and Jack won't tolerate the hearing tests they perform in her office), vision screenings (she's not an optometrist), and anything GI related (we have a GI specialist for that).

Remember, too, that the collection of doctors you accumulate for your child is always a work in progress.  You can tweak it and cut away weaker links as you see fit (in most cases - your insurance policy may not allow that).  While you don't want to "doctor shop" or change physicians every couple of weeks, be on the lookout for recommendations from other parents who are truly happy with a particular doctor.

Special needs parents - what advice would you give someone who is trying to find the perfect doctor for their child?

Monday, August 6, 2012

Battling Worthless

Happy Monday, everyone!  We in the Reinventing household spent our weekend nursing Daddy back to health.  He had laser eye surgery Friday and got to spend the weekend knocked out on sedatives.  I couldn't help but feel just a tad jealous of all of the sleep that he got!

Today I'm over at the SPD Blogger Network again.  I'm really proud of this post.  I took a deep look at myself and confronted my own feelings of worthlessness.  Join me there (click the link below) and join the discussion:

http://www.spdbloggernetwork.com/2012/08/06/battling-worthless/

Wednesday, August 1, 2012

New Beginnings

Dear Jack's School Team,

Another summer has come and gone.  As we progress towards the first day of school, I would like to share with you just where we are at this point.

Jack's summer has been filled with promise, progress, and some setbacks.  Over the summer, he began to distally point when prompted with a "Where is (plus a familiar noun)?" question.  He has also emerging in his ability to jump.  While these may seem like little steps, I know you can see the progress.  You can appreciate it, because it wasn't there before.

ESY went better than we could have possibly imagined.  I know you will be receiving a report that shows that Jack made no progress during ESY, but I can attest to the fact that there was progress to be seen.  It wasn't progress that pertains to an IEP goal, but progress of a much more global nature.  You see, Jack basically had a 1:1 para-pro assigned to him over those summer weeks and his comfort level - both at school and at home - was noticeable.

We learned some lessons from ESY.  It reiterated to us that Jack requires 1:1 support, along with constant sensory support, in order to fully benefit from school.  We also learned that it would be to Jack's benefit to have breakfast at school each day.  This will give you all additional time to work on the myriad of feeding goals that are currently on Jack's IEP.  I know that this is going to be stressful for you - I know that it was stressful just dealing with snack-time last year - but it's also going to be stressful for me, too.  I'm going to have to relinquish my boy to the school bus each morning.  I'll be the first to admit that this is going to be tough, but we've got to do this for my boy.

I'd also like to remind you of a few things.  First, my boy is still not safe around food.  It's tempting, when he's on a roll, to look away and help another child, but this is simply not possible.  Over the summer, it has been these very moments that have led to disaster - to situations in which he came so close to a serious choking incident.  It takes our breaths away each time.  So please, watch him closely. I beg you, don't let yourself get lulled into complacency.  It is those moments that time and time again have proven hazardous for my angel.

Second, remember that Jack will simply shut down when overwhelmed.  I know that there are children who scream and cause behavior issues from time to time, but don't ignore Jack just because he's quiet.  It's in those moments that he needs you the most to pull him out of his world.

Finally, remember each and every day that the child before you is more than just your student.  He is someone's baby.  My heart beats for him.  I read constantly about kids like him being mistreated at school.  I trust each of you; I couldn't relinquish him to your care if I did not.  Please don't ever do anything to violate that trust.  Please treat my baby with care.

I look forward to this year and the progress to come.  I hope that each of you look to this year with similar anticipation and I hope that you'll expect nothing but the best from my boy.  I want him to know that I believe in him, and I hope you believe in him as well.

All the best,

Jack's Mom