Friday, December 30, 2011

Happy New Year!

On the heels of my last post about burning out, I burned out.  The Christmas season got the best of me.  Jack struggled more than usual with the little things, and I was spent.  Between the regular holiday activities and therapy, it was all I could handle to eat and sleep, much less blog.  I'll post about the lessons learned from Christmas this year, but now is not the time.

As we prepare to ring in 2012 with Auld Lang Syne, I take a brief minute to reflect on where this year has taken us.  Jack was diagnosed with autism.  That is a monumental shift in our lives in and of itself, but I feel that the biggest shift has been in my own role.  I went from being a rookie domestic to a mom who increasingly feels that I can handle this task of raising a child with special needs.  I no longer depend solely on the opinions of professionals to validate that I'm doing right by my son.  I trust my own judgement regarding his treatment and what he can and can not handle.  I'm beginning to realize I am the expert in my son.

Most importantly, I no longer believe that autism is the end of the world.  It has altered the course of our lives, but I am beginning to see possibilities.  While I strongly believe that Jack will continue to require support well into adulthood, I see possibilities for his intelligence.  Lacking independence does not mean that Jack cannot change the world.  I believe he can, and he will.  If nothing else, for every person unfamiliar with autism who reads this blog about Jack's triumphs and struggles, he has changed the world.

Jack is breaking down the barriers that come with a lack of acceptance and understanding.  It is seeing the beauty and unabashed joy in his face in the midst of stimming, which to many is always viewed negatively.  It is witnessing the baby steps of progress.  It is in every word spoken by my sweet angel.

Also, I am beginning to see myself as an advocate.  It's not a role I would have taken on voluntarily, but it is one I will assume everyday for my boy.  I realize that I can make a difference.  Maybe, I have found my calling.  I always imagined science and engineering would dominate my life, but perhaps this is where I'm meant to be.

To you and yours, I wish you a very Happy (and safe) New Year filled with blessings, joys, and progress for our incredible children.  I'll see you in 2012.

Monday, December 12, 2011

It Gets Better - Special Needs Edition

The title of this post may be deceptive, so I'll more than likely have to clarify it a time or two, but this is a post that simply had to be written...and here's why.

Last Friday, I saw two (yes, two) stories about mothers who took the lives of their own children because the children were autistic or because the mother feared the child was autistic.  In the past couple of weeks, a local news story in our area highlighted a case of a mother who killed her daughter who had Down Syndrome.  Several special needs bloggers have posted about these cases this week.

I felt compelled to say something.  As a mother, stories such as these get to me on a very personal level.

I simply cannot understand why anyone - anyone - can harm a child.

I'm not trying to have a lack of compassion of empathy about this, because I know the stress that having a child with special needs can place on a family.  It strains you financially.  It strains you emotionally.  Divorce rates are high among our families.  Personally, I know that being a mother to an autistic child means you give and give and give until you break.  You then go off, have a good cry, a glass of wine, and take a breather.  Then, you go do it all over again, because you have to keep going.

I've heard some bloggers in the wake of these tragedies mention that perhaps we all need to watch what we say about the realities of parenting a special needs child, because we don't want to make someone feel like this is hell...like this is a life from which one would wish to escape.

Well, I think there can be a middle ground.  I think that it helps to get it off of your chest.  I think there is something to be said about the realities of parenting a child on the autism spectrum that is raw and not always pretty.  I think we have to voice those aspects of our lives in order to bring attention to the cause and what our children need to succeed.  I think people need to understand that our kids aren't just misbehaving (though they are at times, but not always), but that this is part of the reality of autism.

I also think that, eventually, people have to take responsibility for their own choices.  Sure, you hear news stories talking about the financial and emotional toll autism takes on families, but you cannot fault the media for highlighting that reality when a person does the unimaginable to her own child.  Ultimately, we must all bear the burden of our choices and placing the blame on others for our mistakes is simply a way of dodging responsibility.  That's not to say that some actions/mistakes are not a manifestation of one's individual disabilities or mental illnesses, but even those actions/mistakes can be attributed to something other than the actions of another individual.

I'm sure that all of us autism mamas have days that I call "Autism Sucks" days.  Those are the days when your kid is a disregulated, stimmy mess.  Those are the days when nothing gets done and you're just trying to survive.  Those are the days when you are simply counting down the minutes to bedtime in hopes that tomorrow will be a better day (don't deny it - we've all been there).  However, the overwhelming majority of us, myself included, have never ever considered doing something so unimaginable to our precious babies.

And if you have, please seek help.  Please, I beg you, talk to someone.  Allow someone to help you.

I'm not going to sugar-coat it.  This is a rough road on which we travel.  I think that's why it is so important to find support within this community.  Find other moms (or dads...not to diminish your role) to connect with and form a circle of support.  For those of us who have been at this for a while, take a mom with a newly diagnosed child (or one going through the diagnostic process) and take her under your wing.  Give her a shoulder to cry on or a listening ear.  We have to be there to support each other. Even the most seasoned moms out there have the occasional bad day...and it's okay to admit that.  If you don't have that face-to-face support, join a message board.  Read some blogs.  Do what you can to remind yourself that you're not alone.

Let's form the support networks that we all need to help us cope with aspects of a life that was not the one that we imagined having one day.

To those mothers just starting down this road of being a special needs parent, I feel compelled to say this to you - it gets better.  I'm not talking about for your child, because no one knows the exact developmental path each of our kids will take.  I can tell you that the vast majority of children show some degree of progress.  The person it will get better for is you.  I know, because I've been there.

In the beginning, when I truly realized the extent of Jack's special needs, I was devastated.  At the time, all of my dreams were crushed with that 6-letter diagnosis given in about 15 minutes.  So many things I had wished for - to travel, to go back to school, and to have another child - seemed gone.  It took a while, but I came to accept it.  I came to accept autism.  We're not friends by any means, but we're on speaking terms.

This is my life.  This is my son's life.  I have learned to cope.  With each step I take, I feel I can take another.  When I fight for my son and succeed, I feel powerful.  When I see my son eat a French fry without throwing up, I feel hope.  His triumphs are my triumphs.  His struggles are mine.  On the days when his struggles are more than he can handle, I feel such pain, but I know that tomorrow is another day.  I will do Floortime every day with him as though my life depended on it - because his life does.  I know that I can - and I will - get up and do whatever I have to do for my boy tomorrow.  And the next day.  And the next.  I am confident that, if nothing else, I can continue to put one foot in front of the other on this journey.  Honestly, if Jack's development just halted, as devastated as I would be, I'd know that I can keep going.  Because I've done it.

You'll gain that confidence, too.  Each day that passes will teach you a little more.  You'll stop feeling as lost and you'll begin to trust your own instincts.  You'll feel that you have the power to affect change in the life of your child.  You'll know that life can - and does - go on.

And to each of you, may you find some peace as you walk this path.

Friday, December 9, 2011

Picture People

One of our "practice" pictures prior to Jack's shoot.
I figured out that if I take two pictures back-to-back,
I can catch him with his eyes open on the second flash.
Coming off of the low from our Santa experience this year, I felt very pessimistic about our odds at a successful photo shoot the following day.

I had told Brian that what I really wanted for Christmas was a picture of Jack.  A good, professional picture of Jack.  He didn't have to look at the camera.  He didn't have to look at the photographer.  Hell, all I wanted was for him to not meltdown and for us to get something vaguely Christmas-like.  I felt that was within Jack's abilities.

I wasn't so sure, now.

I had done all I could to set him up for success.  First, I found a children's photographer, because if anyone would understand how to take pictures of someone who won't look at you and who doesn't seem to understand what you say (namely infants), then maybe they could handle Jack.  After all, Jack is, in many ways, a mobile infant.

Selected the photographer was key.  We had done two photo shoots at Target's photo studio and both times I was disappointed.  For some reason, photographers have a very difficult time taking pictures of a child and not harping on the fact that they won't look at them.

It looks like he's smiling, but he's really closing his
eyes so tight that it makes his face curl up into this
really fake pseudo-smile.  Still cute, though.
Second, I selected the earliest time slot we could.  I figured that if we were the absolute first people at the store, the noise level would be much lower and Jack might could handle that.  I also scheduled the shoot for Sunday morning, which would eliminate the church-going set from the mix.

Third, we brought letters.  We practiced with my iPhone taking pictures so he'd get used to the flash (which didn't happen - he just squints his eyes so hard in anticipation of the flash that it makes him get the appearance of a fake smile).  We were as ready as we were going to be.

We got to the studio and Jack seemed okay.  I quietly reminded the staff that Jack was autistic and what that would mean for the shoot.  He probably wouldn't look at them.  He wouldn't follow directions.  He wouldn't respond to his name.  I reiterated my expectations, that I just wanted a nice picture, but that him looking at the camera was not essential.  They seemed to understand.

Then, they started calling his name.  Over and over and over again.  I guess it's just ingrained in what they do as photographers, but will they not listen?

At first, Jack started to meltdown, but I quickly grabbed him and began to rock, shush, and give him deep pressure.  With that input, I felt him relax.  After a few moments of that, he seemed centered, regulated, and perhaps ready to give it another go.

So we did.  And it went much better.

Sure, it was slow going.  Getting Jack to interact with any of the props was next to impossible.  We'd hide his letters in the "presents" they had, only to have him act as though the letters were gone forever.  He wouldn't search for them as we'd hoped.  They set a ladder up for him and tried to get him to climb it.  As much as I tried to say that he couldn't climb a ladder, they did it anyway and it was a bust.

However, Jack kept it together.  After the photographer tried to get Brian and me into a shot (we declined, we hadn't dressed for the pictures and Brian hadn't shaved that morning) and I firmly said no, we were finished.

The pictures were okay.  Many of the attempts of the photographer to get Jack to look like he was looking at the camera simply looked unnatural.  Jack looked just off to the side of the camera and looked extremely uncomfortable in each one, so we didn't go with any of those.  Instead, we selected a pose in which Jack had picked up a small present (he was about to chuck it out of his way).  He wasn't looking at the camera, but he looked natural and it was in the Christmas spirit - my criteria for a successful shoot.

After much pleading to get us to purchase a $400 package of prints (no, thank you!), we paid and left.  While I don't think we'll use that photographer again (I may need to find a private photographer willing to work within our budget and needs for next year), I was pleased with what we got.

We got my one Christmas picture of my precious, special angel.

Thursday, December 8, 2011

Good St. Nick

Jack visiting Santa at approximately 9 months old.
Do you ever get so optimistic about something that you get to that point of anticipation only to experience a roundhouse kick to the face of disappointment?  So goes our experience with Santa Claus this year.

We went to a mall Santa when Jack was 9 months old.  We went to a Santa at my cousin's elementary school when Jack was a year old.  That Santa experience involved Jack not being willing to be touched by Santa, so Santa resorted to crawling around on the floor with him so we could get a picture.  As Jack's sensory issues have steadily become more prominent over the past couple of years, we were searching for a Santa experience this year that would involve a minimum of sensory overload and anxiety for him.

So, imagine my delight when I found out that our local autism society was hosting a special Santa experience for autistic children!  Hosted at a local ABA center, kids would get to play in a sensory gym prior to going to a private visit with Santa away from the other children.  There would be a photographer who would take pictures and put them on a photo CD for us.  It sounded perfect!

I was very optimistic about Jack's ability to manage this situation.  The ability to get some sensory input prior to seeing Santa, and then to see Santa with no kids around in a situation in which Santa would (hopefully) understand Jack's unique needs was ideal.  I was setting us up for a Christmas activity of which I was certain Jack could handle.

This last Saturday, we came home from Jack's special needs play group and got him dressed for Santa.  I'm addicted to Janie and Jack clothes, so Jack was decked out in dark blue corduroy pants, a collared shirt, and an argyle sweater vest.  With the exception of the beat-up Toy Story shoes, which are the only shoes he'll allow to be put on his feet, he looked so ridiculously cute.  I may be a little biased, but I have a really friggin' adorable kid.

We had our letters.  We had a snack.  We'd been to play group, so Jack had sensory input and movement already in his day.  We were going to a Santa experience designed for autistic children.  Jack was in a good mood and seemed to be handling his day well.  I was so excited to get to do something that typical families get to do - visit Santa.  What could go wrong?

Plenty.

We got to the ABA center which, as so many places for special needs kids seem to be, was housed in a warehouse.  Why would this be an issue, you say?  One word - acoustics.  It goes the same for the indoor aquatics facility where Jack goes to PT.  The noise bounces around and amplifies.  Excellent.  It's sad to say, but those are the things I notice these days.

We go inside and I'll say that the term "sensory gym" might have been generous.  The sensory gym at Jack's therapy clinic has swings, slides, and all sorts of movement activities.  The "sensory gym" at the ABA center was a trampoline and a bunch of bookshelves that resembled preschool centers.  Also, there were no less than a billion children (literally, it seemed like the earth's entire child population was in that room) there.

Perfect environment for an autistic toddler.

Jack immediately disengaged.  He didn't notice another human being in the room.  It's interesting, because you can almost see the switch shut off...like he's switched into hyperfocus and will not acknowledge anyone else.  He found a bead maze and spent his time before seeing Santa pushing the beads back and forth.  Brian and I could tell by looking at him that he was stressed out, so we just let him fixate.  Whether that was right or wrong, we did what we felt our baby needed us to do, which was let him be.

They called us back to see Santa in what resembled a teacher's workroom.  There were OSHA posters on the wall and mailboxes on another.  There may have been a copier behind Santa.  The ceiling of the workroom was open to the rest of the space, so you could hear everything from the "sensory gym".  Everything.

For their part, Santa's "people" had sent me a questionnaire asking what kinds of things Jack likes (letters and Super Why), will he speak with Santa (no), and what might they do that might set Jack off (anything?).  When we entered, every person in the room began to bombard Jack with questions.  "Can you tell Santa about Super Why?"  "What letters do you have?"  "Can you come see Santa?"

Jack found the mop bucket in a corner and went to investigate.  One of Santa's helpers said, "Every kid has gone right for that mop bucket!"  Well, maybe you should move it?!?


She then made a big mistake, which was trying to pick Jack up.  I had said specifically in his information sheet that touching him might set him off, and Jack demonstrated that in due form.  Brian picked him up, but Jack was already done.  He seemed overwhelmed and confused.  I could almost see that his system was getting far too much input, from the noise from the center to Santa's people asking him questions, to the florescent lights and the busy walls.  He couldn't handle it.  He couldn't process it all.  He began to scream and flail and lose control as my heart began to sink.

I sat next to Santa (not on his lap, I just find it creepy) and held Jack tightly, both to give him input and to help control and keep him there.  We attempted to put Jack in Santa's lap, but he writhed and squealed.  So, we got what pictures we could and left.

When we got to the car, I couldn't help but feel a sense of disappointment.  First, and foremost, I felt that this was not designed for autistic children at all.  The autism society said that kids could stay and play as long as they wanted, so many parents were taking advantage of this to socialize with each other while their kids wandered aimlessly, flapped their hands, jumped on trampolines, and fixated, like Jack was doing.  However, and maybe this is the Floortime person in me, I saw a bunch of kids who were stressed out.  They were doing these things because it was all too much for them.  They needed a way to soothe.

I feel like at times we parents of autistic children try to force them to meet this standard of conformity to a world which is so alien to them when what we really need to do is meet them at their level.  It's a lesson I constantly must learn, as even I push Jack too far in pursuit of a sense of normalcy.

If I could give some pointers to the autism society, I would say to do the following for next year:

  • Schedule this event at a smaller facility with an actual sensory gym.  That way, our kids can get some movement and proprioceptive input prior to seeing the jolly old elf.  One trampoline doesn't a "sensory gym" make, especially for kids like mine who can't jump.
  • Take everything, and I mean everything, into consideration when looking at a space.  A warehouse maybe wasn't the best choice.  The room Santa was in was too busy.  Educate people on speaking softly, moving slowly, and exuding a sense of calm.  These things make a difference for our kids.  Jack responds far better to a person who uses a calm voice and is not very overwhelming.
  • When a parent says that their kid isn't going to talk to Santa and that all they want is a picture, don't bombard the kid.  Listen to the parents.  This isn't about making an autistic child conform to a Santa experience.  Tailor the experience to the kid.
  • While I don't think you should play the "Don't let the door hit you on the way out" game, I would schedule only a few children at a time.  Ask parents to arrive about 20 minutes prior to their appointment to allow children time to transition into the environment, but ask parents (respectfully) if they wouldn't mind leaving after their appointment with Santa so that they can make room for more children.  The more and more children there are, the more stressful it is for our kids.
Brian and I were both sad, too.  We had a lot of hopes for how Jack would do, and while the scenario was different than what we anticipated Jack facing, we were no less disappointed.  Christmas this year has been a bit more difficult to bear, because Jack still isn't at the point where we can do the things that typical families do around the holidays.  So much of our delight with the season rests in Jack's happiness, and when he doesn't enjoy (or understand) it, it takes away a piece of our joy.

It's a game of trial and error.  We constantly learn what Jack's limits are.  When we push and he doesn't quite get there, we readjust our expectations.  Next year, I don't think we'll do the autism society's Santa experience.  We may go the private Santa route, and maybe we'll see if other families want to get in on the act and share the cost.  We'll readjust, dust ourselves off, and move on...with hopes that better days are in the not too distant future.

Wednesday, December 7, 2011

What Does _____ Do For Autism? (Part Three)

Jack at aquatics.  And no, he's not by himself in the middle
of a pool...his therapist is right off to the side.
Today's installment, and the final one of this week's series - Physical Therapy.

(I won't go into too much detail about my feelings on behavioral therapy, namely Floortime, but if you want to know about those aspects of autism treatment, click here and here.  I honestly can't speak much to ABA or other models of behavioral therapy because we don't go that route.  Jack also receives Special Instruction, which basically is a private special education preschool teacher.)

This is probably the therapy that Jack gets that people understand the least.  If you were to see Jack out and about, you'd see that he walks.  Well, if he's walking, why would he need PT?

Well, it's because he's walking, but he can't jump.  He struggles with motor planning (I go in some depth on this in yesterday's post).  He's very uncoordinated.  He tends to use only one side of his body (his right) to do things, thus leaving the left arm and leg a bit weaker.  PT helps with these issues.

For Jack, he does his PT in an aquatic setting.  The water helps Jack stay regulated through the constant pressure of the water against his body (sometimes...not always), plus it provides natural resistance and allows him to work on motor skills with a diminished sense of gravity, so he can do things in the water that he couldn't do on land.  For example, try jumping and doing a somersault in the air without touching the ground.  Unless you are a gymnast, or have the assistance of a big trampoline, you couldn't do it.  Then, try doing a somersault underwater.  Much easier, right?  Same idea.

I think that PT is harder for people to understand as a treatment for autism because I get the impression that it wasn't as widely utilized for autistic children until the not too distant past.  Kids with autism have social and communicative issues, so it's easy to say that those are the most obvious issues and that those deserve the focus of treatment.

As my back and wrist can attest, Jack needs PT, because he's getting heavier and it's difficult for me and Brian to continue to assist him and carry him as much as we do.  He needs quite a bit of assistance to ascend stairs, and even with assistance he can't make it all the way up a typical flight of stairs.  He usually defaults to crawling from the get-go (it's easier for him than walking) or requests "up" so that we'll carry him.  He falls often when walking around and while he doesn't really feel it when he falls, he could really hurt himself.

In my opinion, why not treat everything?  If my kid has motor deficits, than I'm going to treat them just as aggressively as anything else.

The good news is that, at least in Jack's case, the motor deficits he has can be treated in PT and he will hopefully require PT for a shorter duration of his life than we anticipate him needing ST and OT.  Speech, pragmatics, and social issues will need attention for years to come.  So will self-help, fine motor, and sensory issues.  His gross motor issues will hopefully be resolved in a few years.

A typical aquatics session for Jack starts with him putting floatation vests and arm floats on.  His PT will usually put a pressure wrap under these to give him even more input.  After that, she works on a number of skills, from him propelling himself forward in the water in a focused direction (we're still really working on that) to jumping into the water (not even close to accomplishing this one) to complex motor skills, like retrieving a toy and taking it back to the side of the pool (this is a hard one).

We're seeing very slow progress, but PT has highlighted deficits that we didn't know really existed, but that do impact Jack's ability to do things independently.  I'm glad we're getting it addressed now, instead of trying to address Jack's gross motor issues later in his childhood.

What have been your experiences with PT - both land-based and aquatic?  Have you seen benefits from PT?

Tuesday, December 6, 2011

What Does _____ Do For Autism? (Part Two)

Today's installment of this week's series - Occupational Therapy.

Now, an actual occupational therapist could probably tell you far better than I what OT is and how it helps, but as I said before I can only provide my Mom perspective.

I have people ask me occasionally why Jack would need OT and what OT is supposed to do for children.  After all, with the word "Occupational" in the title, one might think it was for adults, right?

Well, what is the "occupation" of children, really?  It's play.  It's life.  A child's occupation is to live and learn.  Thus, OT helps children accomplish tasks related to that objective.

Children on the autism spectrum have several issues that OTs can address.  First, most people may not be aware of this, but many children on the spectrum have difficulty with self-help tasks and fine motor skills.  For example, Jack can't use utensils.  He self-feeds Cheerios (though we're currently on strike from that after a failed attempt to introduce Alpha Bits in his Cheerio cup) and, most recently, cereal bars (as long as he doesn't touch the gooey part, then it's over) and Chick-Fil-A Waffle Fries (but not other fries, ironically).  OT helps him build the fine motor skills to self-feed.  As Jack progresses, OT will help him with other self-help skills.

Many children with autism have difficulties with motor planning, which is a complicated thing to understand.  I'll put it this way, a typical child Jack's age would see a new piece of play equipment at the playground and start to tackle the task of scaling it immediately.  Jack will look at a piece of equipment and while he might want to climb it (we have no real way of knowing), he can't do it.  The child who climbs to the top of the piece of equipment had to execute several motor actions to get there.  He had to climb the stairs, round a corner, perhaps crawl through a tunnel, all to get to his destination.  Jack's brain simply doesn't quite tell him how to do these things.  We have to physically manipulate his body for him to help him climb that same piece of equipment that the other child could scale so easily.  Only through making him do that motor sequence multiple times can Jack begin to "learn" the sequence of actions needed to execute that motor movement.

Does that make sense?  I'm probably not saying that right, and an OT can probably describe it better, but that's the 5-cent version.

So, OT helps Jack with his motor planning.  He plays in a therapy gym that looks like the world's coolest indoor playground.  He swings on swings.  He climbs stairs.  He goes down slides.  He pushes weighted animals.  This also helps him with his low muscle tone, but I'll get to more on that tomorrow.

Jack has difficulties with transitioning, or moving from one task to another.  I'd suspect that's due to his sensory issues in some way, but OT helps with this, too.

Jack also has difficulties with sensory integration.  Dr. Stanley Greenspan, the Floortime guru, said that not all children with sensory integration problems have autism, but all children with autism have sensory integration problems.  Jack is certainly no different.  He has sensory issues related to eating, as well as tactile sensitivities and some sensory needs, like he craves pressure and movement.  Jack's system tends to over and under react to various sensory stimuli, and the constant bombardment of stimuli on his system cause him to be disregulated. OT helps address sensory integration issues.

Why are sensory issues such a problem and why would they need to be addressed?  If any of you have been reading my blog for a while, you'll know why.  Sensory issues affect every aspect of our daily lives in our house.  We can't go out to eat, go to the store, or go to many public places with Jack because it is simply too overwhelming for him.  He'll react by screaming or stimming.  In a baby, that's not a big deal, but in a kid approaching three, it's more noticeable and gets us some looks.  He also won't touch or taste new things.  To try to make him do that makes him scream and melt down.  Things like bathtime, diapering, toothbrushing, and other self-care tasks are extremely difficult because he can't tolerate the sensations involved.  OT will help him learn to cope with these differences in his neurological functioning that cause him to experience the world differently than the rest of us.

Not to diminish the role of other things that OT addresses, but those are the biggies that come to my mind.  Our OT also reinforces what is going on in ST and works on behavioral issues, when necessary.

In my experience, OT is awesome.  Kids love it (heck, I'd love to go swing and go down slides, too!).  OT definitely works as a means towards the end that all parents of autistic children are trying to achieve, and that's a future for our children that includes as much independence and self-determination as is possible.

What about you?  What are your experiences with OT and how has it worked for your child?


Tomorrow's installment - Physical Therapy.

Monday, December 5, 2011

What Does _____ Do For Autism? (Part One)

While Jack's speech therapy sessions do not involve
Colin Firth, I am definitely not opposed to the idea.
It's all therapeutic.
In my constant effort towards educating people about the realities (not the myths) of autism, I am introducing a series this week highlighting the therapies that Jack currently receives and what those therapies can do for a child with autism.  Bear in mind, I am not a therapist or a doctor.  I'm just a Mom and I can only share what I experience through Jack's treatment.  If you are a professional, or another parent, or you just have a question, feel free to jump into the conversation and share your experiences.

I figured a good starting point would be with speech therapy.  This is the therapy that most people have few questions about, and with good reason.  When people think of autism spectrum disorders, they think about children who can't talk.  Jack has an obvious speech delay.  So, it's a no-brainer that kids with autism get speech therapy.

However, ST does so much more than just get our kids talking.

Jack has a delay in both expressive and receptive language (technically, he's diagnosed with Expressive/Receptive Language Disorder).  To those not entrenched in the special needs universe, this means that Jack has delays both in the language that he produces (expressive language) and the language that he understands (receptive language).  So, not only does Jack have difficulty communicating, but he has difficulty understanding what people say.  This results in a lot of frustration for Jack, because he can't efficiently get his point across or let someone know what he wants or needs.  It also causes a lot of frustration for us parents, because Jack won't follow a simple one-step command and we have a hard time gauging what he does and doesn't understand.

Speech therapy helps with both of these issues, through play and various techniques.  Also, Jack has some oral-motor weakness.  Speech therapists know what to do to get kids to exercise and strengthen those muscles.  Oral-motor weakness affects Jack's ability to both produce speech and eat, so this is a critical area to focus on.

Jack also has a condition called dysphagia.  Dysphagia is, essentially, difficulty in swallowing, and has resulted in Jack being on a mostly pureed diet, until just within the past few months.  Speech therapists treat disorders of feeding and swallowing, so Jack also receives feeding therapy during his speech time.  His therapist works with him to help him learn to chew and swallow in an age-appropriate way.

So, that's it, right?  That's all speech therapy does, right?

Wrong.

Speech therapy also focuses on social skills and the social aspects of communication, as well as language used to communicate and socialize (known as pragmatics).  Obviously, this would be an area, if not the area, with which Jack would need sustained assistance and therapy.

I think this is also the area that people have a harder time understanding.  After all, if a kid talks, he talks, right?  Check out these two examples:

Mom: "What did you do at school today?"
Kid: "I painted a picture!"

Mom: "What did you do at school today?"
Kid: "More cookies."

See the difference?  The second kid didn't answer the Mom's question, he just stated a request.  Jack tends toward echolalia often, so you might hear something like this in our house:

Jack: "More Super Why?  No, all done Super Why." (over, and over, and over again)

Did you catch what just happened?  Instead of making a request, he says the entire exchange, like a script, over and over.  He states a request ("More Super Why?"), but then he also gives the response that he so often hears from me and, thus, seems to be anticipating ("No, all done Super Why.").  He doesn't say it to a person, just to himself.  He'll sit on the floor by himself and say this 20 times or more.  Does he want Super Why, or doesn't he?  Who knows, but you can see how he is producing words, but they are not his own (they are echolalic) and he's clearly not communicating anything.  Thus, producing words doesn't equal communication.  This is where pragmatics come in.

Here's another example from just last night:

Me: "Jack, is that tasty?"
Jack: "Jack, is that tasty?"

It's probably easier to see what happened there.  I asked a question, but instead of an answer, I had the question spit right back out at me.  Obviously, that's no way to hold down a conversation.  He's producing words, but they are not his own thoughts.  Speech can help with this.

There are other aspects to communication that you never think about, but are also important.  For example, I remember at Jack's 12 and 15 month well child check-ups being asked if he was pointing out objects of interest to me.  I answered that I supposed that he was, but that I'd never really thought about it...which should have been a clue to everyone, including me, that he wasn't.  In fact, Jack has never once pointed out something that interests him, like the way typical kids from an early age will point to a dog nearby to show a parent, or will point and say "What's that?"  In fact, Jack has never pointed.

You might not think this is important to communication, but it is.  If a child doesn't have words for something, a gesture such as a point can get the "point" across.  So can a nod, a reach, a shake of the head...all things that Jack can't do.

Also, many people think that kids with autism never look people in the eye.  Well, what I find is more common is that they give fleeting, infrequent eye contact.  As we all know, the easiest way for someone to know that you are speaking to them is for you to look at them.  If someone doesn't look you in the eye while they speak, you have no clue to whom they're speaking.  I had to learn this the hard way, when after years and years of not looking people in the eye, people started demanding that I do it.  I was in college before I learned to look people in the eye when speaking to them.  Speech can help with this, too.

I can't say enough good things about the speech and feeding therapy we do now.  I hope that clarifies some things.  Feel free to leave comments and questions and share how speech and/or feeding therapy has helped your family!

Tomorrow's topic - Occupational Therapy.

Friday, December 2, 2011

Thanksgiving 2011 or The Day of Constant Stimming

"More Super Why?  More Super Why?  More Super Why?"  It was the constant refrain of our day.

To most families, Thanksgiving is a day of overindulgence in good food, abundance of family, and remembering the blessings we have in life.

If you can judge by the following comment I made in the car on the way to my in-laws' house, you'll see that no one in the Reinventing house was thinking along those lines:

"Everyone is going to have a better attitude, okay?  EVERYONE."

We were all on edge that day.  The week had been stressful, to say the least.  Brian had taken the whole week of Thanksgiving off, but that was messing with Jack's sense of routine badly, and it was making Brian feel awful.  More than that, 3 of Jack's 5 therapies/special needs activities were cancelled for the week.  We had ST and OT earlier in the week, but would be going a full 5 days with nothing but Floortime, and Floortime in our house had not gone well for a few weeks.

Thanksgiving Day, it came to a head.  Jack wouldn't eat for us.  Going somewhere for a meal mid-day was more than he could handle.  The second we got to my in-laws' house, Jack started with the "more Super Why"s.  While watching TV for hours on Thanksgiving Day would not have been my choice for him, that's exactly what Jack did.  Really, there wasn't a whole lot I could do about it, either.

When it was time to eat, we decided that we would try to bring Jack to the table.  Not to eat, mind you, but just to sit with us.  We brought his iPad to keep him occupied and calm.  It was my one wish for Thanksgiving - to be able to sit with my family...including Jack.  He didn't have to eat.  He just needed to be there.

That didn't happen.  We tried to strap Jack into the booster seat at Brian's parents' house, but he was screaming and flailing so much that we had to put him down.  Even if we had gotten him in the chair, it wouldn't have been fair to anyone else to have him screaming through what should be a highlight meal of the year.  So, we put him down and let him go watch Super Why in another room and play with his cloth letters.

That's what he did.  All.  Day.  Long.

I tried to hide my disappointment, but I probably did a really crappy job.  It's hard to have expectations that you think can be achieved, only to have those expectations not come to fruition.

In reality, I know my expectations were probably more than Jack could handle.  Sitting at the table with two other people is a lot for him, and five would be more stress.  While I may long for some resemblance of normalcy during the holidays, it's not fair to Jack for me to hope that.  I'm still not great at meeting him at his level.

We're getting back to normal.  We had a rocky start to the therapy week and an increase in tactile sensitivities all of a sudden, but Floortime's been improving, so I'm hoping that we're turning a corner and heading back to where we were a few weeks ago in terms of Floortime and engagement.

See?  I just "hoped" something else!  I'm really bad at this...


Thursday, December 1, 2011

Mandatory Reporting

Recently, I read an article in the AJC talking about broadening our state's mandatory reporting laws in light of the recent events at Penn State.  What I'm referring to are the laws which state that certain individuals are required by law to report suspicions of child sex abuse.  Note that I didn't say proof, because the law requires that you report suspicions as well.

Upon reading the article, I was actually shocked that the list of mandatory reporters was so narrow.  Here are the types of people who have to report their suspicions of abuse:

  • Teachers, school administrators, school psychologists and social workers
  • Medical professionals, including doctors, nurses, dentists, and hospital personnel
  • Professional counselors, social workers, and therapists
  • Licensed psychologists
  • Child welfare personnel
  • Law enforcement personnel
Notice anyone missing from the list?  How about the following:
  • Clergy
  • Coaches/Instructors
  • Day Care Personnel
  • Babysitters/Nannies
Sure, legally no one at Penn State was required to report what was going on.  We can argue all day about whether or not anyone there did anything wrong by not reporting what they saw to the police (I believe yes, but I'm not going into that), but the core issue is that we should compel individuals to report abuse if they will not do the right thing and do so voluntarily.  There is a code of silence in certain organizations, sports and religious organizations among them, that keeps witnesses silent when they know or suspect wrongdoing.  They don't want to tarnish the good name of their church, their team, or their school.  Ultimately, children pay the price for their silence.

The punishment for failing to report abuse is woefully inadequate as well.  Failing to report is a misdemeanor punishable with up to one year in prison.  That's the maximum sentence, and I'd argue that few, if any, receive it.  After all, with all of the cases of teachers having inappropriate relations with students, you never hear of other teachers or administrators going to jail for not saying anything.

Why do I feel the need to devote an entire post to this?  Because I am a Mom of a child who cannot tell me if someone is hurting him.  I am able to protect him now, but in 3 short months he'll be starting special needs Pre-K.  He'll be out of my sight, out of my protection, for several hours daily.  I'll be wholly reliant on people whom I know very little to treat my child with dignity, kindness, and respect.

If I were to ask Jack if someone were hurting him, he wouldn't be able to tell me.  I'm dependent on the eyes and ears of others to watch over my child as if he were their own and tell someone if they saw him being mistreated.

It's every parent's worst nightmare.  It is my hope that no one ever treats Jack with anything less than the kindness and compassion that he deserves.  However, people should step up to the plate and report suspicions of abuse to authorities.  Even if it's not legally required, is it not morally imperative to do so? We should have the courage to stand up for children, because they are more important than the stability and welfare of an organization.

What do you think?  Should we require more people to serve as mandatory reporters of abuse, or is that opening a door to a cascade of false accusations?