The 1 in 88

He's more than just a statistic - he's my angel.
His is just one of the faces representing the 1 in 88
children in the US on the autism spectrum.

The latest CDC estimates on the prevalence of autism spectrum disorders were released just yesterday.  Now, I thought the numbers were shocking and worthy of public outcry when it was 1 in 110 children on the autism spectrum; however, the most recent numbers show that 1 in 88 American children are affected by an ASD.  1 in 54 boys in the United States is on the autism spectrum.

Let those numbers sink in.  1 in 88 children.  1 in 54 boys.  

That means that the probability that any one child in our country is autistic is approximately 1%.  The probability that a boy is autistic is approaching 2%.


Let me say this, that means that nearly everyone - and I mean EVERYONE - knows someone who is autistic or who has a child or another close relative with autism.


Those numbers are very, very frightening.

To the naysayers who might claim that those numbers are exaggerated, I'd point to studies coming out of South Korea where every child was tested for autism and the actual prevalence there was shown to be 1 in 38.  I would also say that every person on the spectrum - and I mean everyone, regardless of their level of functioning - struggles in some way or another daily, whether it manifests more subtly in trying to regulate a sensory system that seems out of control or in navigating social complexities, or more noticeable symptoms such as frequent self-stimulatory behaviors and difficulty with the basic tasks of communication, self-care, and mobility.

My child needs a great amount of assistance with daily living, learning, safety awareness, and communication.  Others may not.  Some may need assistance with just one particular area, and some, like Jack, have multiple therapeutic needs.  Regardless of where someone falls on the spectrum, they all need support.

While I don't like to use statistics to frighten people, my hope would be that these figures would serve as a call to action for our country to get serious about addressing what can only be acknowledged as an autism epidemic.  I believe that Autism Speaks put it well when they suggested that we needed to commit to research on many different aspects of the causes of autism, work towards developing better medicines and treatments for individuals with autism, and expanding support systems to serve the growing population of autistic adults as they age out of the public educational system.

Better yet, I believe the commitment to lowering the age of diagnosis to 18 months for all children, regardless of ethnic or socioeconomic background, is critical to addressing this epidemic and meeting the challenges head on with early intervention.

And still, once those children have been diagnosed, what are we to do?  I would like to see state services waiting lists unlocked and increases to state budgets for the care of the developmentally disabled.  I would also like to see nationwide insurance mandates to cover autism treatments and therapies.  Insurance companies refuse to cover treatments otherwise.  States budgets are strapped and only provide the bare minimum.  School systems are flooded with children who need services.  Parents have to constantly fight for what their children need instead of putting energy into their kids.  Instead of the constant banter between politicians over rather petty social issues (some of the recent abortion and immigration debates and Sunday alcohol sales come to mind), we should focus energy on areas that will make a difference.

These aren't just issues that can be debated.  These are children's lives.  And yes, something that affects 1 in 88 children absolutely will make a measurable difference.  Something that affects 1 in 88 children affects us all, whether Republican, Democrat, Tea Party supporter, or whatever your affiliation...it affects us ALL.  If it doesn't yet, one day you will know someone with an autistic child.  Ultimately, if we don't focus on giving autistic children the care they need, we will have a generation of children growing into adults who will not be able to fully support themselves and who will not be able to fully contribute as taxpayers.

Yes, we need to do this for every one of the 1 in 88.  However, I don't just see them as the 1 in 88, as some of you might.  I see these children as individuals with names, adorable faces, and stories of challenge and triumph.  I see the children of my fellow autism parents.  I see the kids in my son's preschool class.  I see the smiling faces of the children I see at the therapy clinic.

Most importantly, I see my son Jack.  He's my 1 in 88.  I see his beautiful smile and precious face.  I see a child that loves to swing, watch bubbles float by on the wind, and sees beauty in letters that others simply cannot see.  I see a child who loves being outdoors.  I see a child who flaps his hands not just because he's autistic, but because he is happy.  I see my son's joy, his struggles, and his pain.  I see my son's life that has been filled with therapies and special education.  I see his past and what we might be facing, but I also see his potential.

God knows there is so much potential with every one of our kids.

There is so much you - yes, you! - can do to help every one of the 1 in 88.  You can take the pledge to Light It Up Blue on World Autism Awareness Day this April 2nd.  You can join a Walk Now for Autism Speaks event.  Or, you can simply spread awareness and kindness in your daily lives and use your right to vote to support expanding services to people with disabilities.  Together, we can make a difference in the lives of every single one of the individuals on the autism spectrum.

Earning My Keep

Yes, sweetheart, I did vacuum the baseboards today!
While I was at it, I also baked a gluten-free cake and
starched your boxers.  You'll find a mint on your
pillow, too.

I promise a post is coming very, very soon about the release of the latest estimates of the prevalence of autism spectrum disorders in the United States (stay tuned tomorrow, folks!), but I started this post today and I'm determined to finish it.

My boy has been in school nearly a full week.  It's been a roller-coaster of emotions for me, as I get used to my new role in Jack's life.  I have been his full-time behavioral therapist for a year.  Think about that...when you hire an ABA therapist, they come into your home for a certain number of hours weekly, but then they get to go home.  Part of the bain (and benefit) of Floortime is that it is, if done properly, a 24-hours a day, 7-days a week effort.  It was draining.  I thought I'd enjoy a brief break.  A break to do the things that I haven't been able to do since, well, since Jack was born.  Like eat a hot breakfast.  Or take a leisurely shower.  Or vacuum.

Think Desperate Housewives.  Those women can meet for cards or drinks in the afternoon, spend time spying on the neighbors, and do the other housewife-like things that "housewives" are supposedly famous for, like tennis matches and exercise classes.

So, why do I feel like I have to be emailing therapists, cleaning my @$$ off, and planning out meals with military-like precision?

Instead, I feel a overwhelming sense of worthlessness.  After all, when I was Jack's full-time Floortime therapist, I had a job.  Now, I don't.

So, I feel like I have to earn my keep.  I have cleaned this house like it hasn't been cleaned since we moved here, as I was 7 months pregnant at the time so I couldn't really clean efficiently.  Then, Jack was born, and tending to his needs has been a full-time job since day one.  Now that I have 3 hours every school day, I feel like I better have this house shining like chrome or else I am showing everyone that I am a miserable domestic failure.

My husband keeps saying that I don't have to feel like I need to earn my keep.  But why do I feel like I do?  Why do I feel worthless, now?

Why can't I relax?!?  I used to be able to relax!  Before Jack was born, I could easily read or spend an afternoon taking a nap.  Now, I feel like downtime must be occupied in some way that makes me useful.

It's not like I can go get a job...as long as Jack has so many therapeutic needs and requires close supervision, working won't be in the cards for me.  However, I feel like going to have breakfast with a friend (not that I really have anyone lined up) or getting my nails done (haha...the best my nails have seen in years is clippers) might just brand me as a sloth.

So, what do I do?  Other moms out there, help me out here!  Is this normal?  Once your kids started preschool, did you feel an overwhelming urge to keep busy all the time?  If so, how did you manage to let go of the restlessness and just relax?

The First Day of School

My big boy on his first day of school.

This may be one of the shorter posts I've ever written, because there are few words to adequately describe how I felt on my baby's first day of school.

As the date has arrived for Jack to start school, day-by-day and week-by-week, I was filled with something I did not expect.  I was incredibly nervous for my little boy.

I've had members of Jack's therapy team comment to me that starting school was going to be hard for my boy.  When I hear that, my heart just sinks.  I mean, am I doing the right thing by sending him to school?  Should I keep him home where he's safe in his world?  There is nothing I hate more than my boy being sad or in pain.

There is also the thought that I won't be there to protect him.  I know, he needs some independence one day, but I imagine that most special needs moms feel as I do that we need to be there to help our children.

In the process, I'm having to trust strangers with my heart and soul for 3 hours a day.  Sure, I've met them, but I don't "know" any of these people.  They all seem very nice, but I don't know them the way I know members of Jack's therapy team.  Jack doesn't know them, either.  They don't know Jack.  It's putting the most precious thing I have in the care of someone else.  And that scares the crap out of me.

Driving to school that first day was numbing.  The thought of 3 hours without my baby was like a punch to the stomach.  How could I do it?  He's like the air I breathe.

Handing him over to his teachers was so incredibly difficult.  His teacher looked at me and said, "Go do something for you."  I squeaked out, "I'll try."  She then looked at me and said, "Don't cry!" and I again squeaked, "I'll try."  The tears came as soon as I got to my car.

I went home and cleaned.  And cleaned.  And cleaned.  I kept cleaning until time to go pick him up.

He did great on his first day of school.  He didn't seem to notice that I had left in the morning, or that I had return a few hours later.  He didn't participate much, but I didn't expect him to do that.  In fact, he did about as well as could be expected for the first day.

It was the beginning of a new chapter in my boy's life.  He will do fine.  Will I get used to my baby leaving every morning?  I'm sure I will...over time.  I will have to evolve, too.

A Letter to My Son on His 3rd Birthday

Jack - just minutes old.

My sweetest baby, Jack -

It was March 23rd, 2009, 8:45 PM.  My whole life changed with a in a single instant with a single cry.  I didn't know then how much my life had changed, but I wouldn't have it any other way.

You had the softest, lightest hair.  Your cheeks felt irresistibly soft to my lips when I would kiss them.  I could get lost just staring at you and breathing in every moment.  You were, and still are, the most beautiful child I have ever seen.

I thought your life would be simple, filled with the everyday pleasures that childhood brings, but God had other plans.  You were sent here with a purpose.  Little by little, we saw that some things were more challenging for you and that you might be different.

Life has not been simple for you, my sweet angel.  You have made great progress, but the things that other children learn naturally have had to be painstakingly taught to you by a team of therapists.  While other children your age spend their days in typical preschool, on play dates, and enjoying the wonders of early childhood, you spend more than 20 hours a week in therapies, both at home and in clinics, to simply have a shot at the opportunities that other children enjoy without having to work as hard as you do.

The sweetest smile you'll ever see.

You defy the odds every day.  A year ago, we were told to not expect you to speak before you were 3.  We were given studies that said that 40% of children who had undergone a speech regression, as you had, would never regain the ability to speak.  I looked at you and could not give up.  We surrounded you with people who believed, as we did, that autism wasn't going to rob the world of all you had to say.  At times it has been tough.  I know that there were days that you wanted nothing to do with therapy, but still you did it.  At 2, you were silent, but at 3, we are beginning to hear your voice.  It is music to our ears, my sweet boy, and we can't wait to hear what is on your mind.

A year ago, you could not eat anything but purees and baby food, and even then you would still throw up violently.  Now, that has subsided, and you are slowly learning to eat foods that we enjoy, like peanut butter, pizza, and French fries.  You are putting on weight, and I no longer fear the scale at the pediatrician's office.  You are well on your way to overcoming this hurdle.

Such an angel.

You continue to amaze me.  You get a little stronger everyday.  You seem more aware of your surroundings.  I hear your laugh more often.  I see smiles on your face.  You give me brief glimmers of eye contact that I didn't get last year.  I couldn't be prouder of you and all that you accomplish.

I am eternally grateful to you, my sweet baby.  You have taught me that miracles happen.  You have taught me to slow down and appreciate the littlest things, because the littlest accomplishments take so much work for you to achieve.  You've shown me the beauty and peace of relaxing on a swing and of watching bubbles float by on the breeze.  You see majesty in things that I don't notice or take for granted, and you are teaching me to be more aware of these things and to experience life with all of my senses.

You have also shown me just how strong I can be for you.  When I felt like giving up, you motivated me to keep going for you.  If you could fight, then so could I.  I've learned that I am capable of making good decisions for you and you helped me to trust myself as your mother.  You proved to me that I can do this.

At nearly 3 years old.  Not a baby anymore.

You have also shown me that love doesn't necessarily have to be measured in terms of hugs, kisses, and "I love yous".  You show your love through your smiles, your eyes, and holding my hand.  I steal moments of hugs and kisses from you occasionally, but I can be patient for you to decide to bless me with your affection.  I have forever to wait, so take your time.

You have shown me that I can live on those brief moments when you will come sit in my lap and lean your head back against my chest.  Though they may be brief, just a small dose, long enough for me to breathe in the sweet smell of your hair and plant a light kiss on your baby soft forehead, is enough for me.

As you move forward and start school, know this - God has a very special purpose for you, and I think I know what it is.  You were sent here to be a teacher.  Not in the conventional sense that we think of the word, but you are a teacher.  You teach everyone you encounter about acceptance and compassion.  With each flap of your hands, you teach them about overflowing joy.  With each word spoken, you teach about accomplishment and everything that children with disabilities can do.  You teach everyone, from family to friends to strangers, about autism.

Most of all, you have taught me everything.  I view life completely different because of you.  You have taught me that anything - anything - is possible.  You have taught me what unconditional love really is all about.  You have taught me that beauty lies everywhere in our world, if we can only open our eyes to see it.

It is with all of this love, more than you'll ever know, that I wish you a very happy 3rd birthday.  I am so incredibly blessed to be your mama and to be walking this journey with you.  I will always be right there with you...every step of the way.  May all of your dreams and wishes come true, both this year and beyond.

Love always, Mommy

Cupcakes and Sprinkles

My angel's birthday is tomorrow.  He's going to be 3.  I can't get over it.

Today, I took Jack to visit the Special Needs Pre-K class that he'll be attending beginning Monday.  It's going to be bittersweet, for sure, seeing my boy start at his big-boy school.  Today's trip was intended to acclimate him to the room, the kids, and the teachers so that it would not be such a big shock come Monday.

We also decided to bring cupcakes.  I can't tell you how excited I was about it.

Here's the thing - Jack isn't aware that it's his birthday.  I try talking about it, asking him, "Who has a birthday tomorrow?  Jack has a birthday tomorrow!"  He doesn't understand.  He doesn't do well with groups of kids (so you can imagine the challenge we'll have with preschool), so we decided not to throw him a birthday party.  I know a few kids that I could invite, but Jack really doesn't have friends.  He doesn't always act aware of the other kids.  I had long ago given up hope of having a party for him this year.

However, going to his school gave me the perfect opportunity to both bring some good will Jack's way with sugary bribes and to have other kids, just for the briefest of moments, celebrate Jack's birthday.  So, I packed cupcakes up and off we went.

Overall, the visit went about as I imagined.  Jack let out several of the blood-curdling screams for which he is so famous.  He did not sit in the circle with the other kids, though his teacher was able to get him to color by sitting behind him and doing hand-over-hand assist.  Watching him color, even though he was being manipulated like a puppet and the teacher was holding the crayon in his hand and forcing him to color, brought tears to my eyes.  It was such a normal activity (minus the fact that it was hand-over-hand) and something that you'd expect to see a 3-year old do!

It made me feel like he was in the right place.  Sure, things will be modified for him and he'll need assistance with...hell, everything, but he'll be in a place that will be willing to give him that modification and assistance so that he can do some of the things that typical kids get to do in preschool.

When it was time for snack and cupcakes, Jack screamed and slapped at me as I held him for his birthday song, but I really could have cared less.  The other kids stared at him with smiling faces, so excited to sing and eat his cupcakes.  Several of the kids came up and wanted to touch him or give him a high-5.  Several talked to him, even though Jack scripted and kept his back to them.  One little boy wanted to be everywhere Jack was.  Jack didn't seem to notice any of it, but my heart was overflowing.  These kids were trying their hardest to welcome their new friend.

Imagine that!  Jack being someone's friend!  Ever since I first heard the word "autism", that's what I wanted more than anything for my boy.  Not words, or independence, but just a friend.

After all, it's not our abilities that make our lives richer, but the relationships we form with others.

He may not have noticed today, but one day he will.  He'll notice the little boy who always sits next to him and says "Hi Jack!"  I wanted to give that little boy a big bear hug and thank him for the greatest gift he could give my boy, kindness and friendship.

And really, that's what Jack needs...he needs persistence.  He needs kids who won't take no for an answer.  He needs kids who want to be around him no matter how much he resists.  He needs that social challenge.

We left shortly thereafter, not wanting to leave on a bad note.  The teachers are great, the class is great, and the kids are awesome.  I am so blessed that my boy is going to be in such a good place.

I left with tears in my eyes.  Tears for the friends I hope he will make.  Tears for the teachers who go out of their way to make sure my boy is okay.  And tears for the promise of all that is to come.

Climbing the Mountain

Image Source:  Wikipedia

This morning, I intended to post about Jack's recent dentist visit and all that it entailed, but I felt a need to post about something else.

Just like many of you special needs mamas (and dads!) out there, I am a part of a support group.  Well, actually two.  I go to one large one that is for our whole area, and another smaller, more personal one.  I get different things from each and find them both to be very worthwhile.

Well, last night was a support group meeting.  I don't like to think of myself as a veteran, because I am by no means an expert at this, but I do feel fortunate that I am a year into my son's diagnosis.  It's just a better place to be.  That's why when parents introduce themselves who are just weeks, or even days, into a diagnosis, I feel it in the pit of my stomach and something in my heart really begins to hurt for them.

Because I've been there.

I won't lie; it's such a hard place to be.  In those first few days, weeks, and even months, I've compared it to drowning.  It's an experience unlike any other.  You have so many questions, yet so few answers.  You receive so much information that you barely have time to process it, let alone sort through it and determine what is and is not useful.

Then there is your grief.  It weighs you down.  You have to reexamine your life and what it means from here forward.  You question everything.  Was it the flu shot I took when I was pregnant?  How did I not see it?  Was I in denial?  Why did this have to happen to me?  My family?  My child?  Is God punishing me?

The fear follows.  You fear the unknown.  What will the next year look like?  5 years?  10 years?  What will my child's adult life be like?  Will we be able to manage?  How will we do it?  It will keep you up at night - the questions and the fear.  You will feel like it's a struggle to breathe.  You'll question if you should seek help.  You'll determine that maybe you should, or maybe you shouldn't.  I'll tell you that you should, in some way, some form, find help and support.  You cannot do this alone.

You will hear grim statistics.  You'll hear that 80% of couples with an autistic child will eventually divorce.  You might hear that 40% of children who undergo a speech regression will never again speak.  You might hear that only a small percentage of people on the spectrum achieve full independence in their adult lives.

You will find yourself sitting at the bottom of a Mount Everest of deficits, therapies, school services, and Early Intervention.  You won't know where to begin, and you'll examine all of the equipment thrown your way and wonder which to use when.

I promise that it gets better.

You'll take that first step on the mountain.  You'll find your footing and slowly take a few more.  You might slip every now and again, but you'll never fall all the way back down.  You'll just fall a few feet. You'll learn that the footing that made you slip wasn't the right one, so you'll try another hand-hold.  You'll be climbing for a very, very long time, but eventually you'll look behind you and see just how far you've come.  You'll feel more comfortable in that environment, with that equipment, and you'll even meet a few other climbers along the way.  Some of those climbers will join you.  They'll warn you when you're about to go the wrong way, and you will do the same.  They'll give you some of their oxygen and you'll do the same.  Eventually, you'll see other climbers coming up behind you and you'll offer to help them.  It'll make you feel good to help someone find their footing.  You'll see the progress and it will motivate you to keep going.

It's a never-ending journey.  It's draining and it's hard.  It's a constant fight.  That doesn't mean that it's not worth doing.

Oh, my heart hurts for those who are just taking those first steps.  When I hear their stories, I feel myself choking back tears, because it's all still so raw to me.  I think it is to all of us.  I look down at my scars and I can see that they never fully heal.  However, they get to a point where they are less noticeable, and only a small portion is there.  That small open wound will still get you occasionally when you least expect it.  You'll feel it's sting when it gets tweaked.  You'll wonder if it will ever heal, and it won't, but it will be less and less noticeable.  You'll get to the point where you only feel it very rarely.  It's not that you don't know it's there, but it's sting won't bring you to your knees like before.

When Jack was diagnosed, he was one of the only kids his age with an autism diagnosis.  As time goes on, more of his peers join him in this community.  I see the looks in the faces of these moms who have just arrived here and I feel their pain so acutely.  I try to always say something to one of these new moms to our community, just to remind them that they are absolutely not alone.  That there is an army of other moms fighting this fight right along side them and that we will take up the fight for their children, too.

To the veteran moms and those who have found their footing, hold out your hands to the moms coming behind us.  Help them find their place and help them know that they are not alone.

To the new moms, know you are not alone.  This mountain isn't easy to climb, but you can do it.  We'll help show you how.

Things You May Not Know About Me...

The other day, I was asking Brian if he would post something at work about Jack's Autism Walk team.  I could sense his hesitation, so being the good wife I am, I pushed him about it.  I come to find out that he doesn't want to be defined at work as the guy with the autistic kid.

Now, that may sound harsh, but I get it.  Really, I do.  After all, there are people at Brian's office who have been regularly asking him if Jack is sleeping through the night since he was born.  Brian's response for the past nearly 36 months has always been the same..."Yes."  So, it stands to reason that he might get asked about Jack's progress uncomfortably often.

I also get the idea that you might want to be defined by who you are and not what your kid does.  I feel like this has happened to me, in many ways.  I'm an autism mom.  However, people may not realize that there was a person there before I was an autism mom.  Seriously.  I wasn't born being an autism mom.

I am a Southern gal.
I am an older sister (out of 7 siblings!).
I am married to my high school sweetheart.
I am a geek.
I am awesome at math, biology, and physics.
I am not so awesome at history, art, or music.
I am a writer.
I am a blogger.
I am a pretty good cook.
I have been a basketball player and a catcher of my softball team.
I have been a quality engineer.
I have been a biology major.
I have been a policy debater.
I have been valued for my intelligence.
I have fallen in love.
I have dated quite a few guys just to get to that point.
I crochet.
I speak bits and pieces of 4 languages.
I'm learning ASL.
I see myself in my son.
I have a hard time trusting people.
I have had my heart broken.
I have had my heart mended.
I have battled crippling anxiety.
I have managed to figure out how to control my anxiety.
I have not figured out how to make it go away completely.
I am weak at times.
I am figuring out how to be strong.
I am realizing that I am stronger than I ever imagined.
I am brave.
I am able.
I am not going to quit.

I am an autism mom.

However, I'm starting to realize that this is my place.  I've found a community here.  I've found that I am needed.  I've found that I have the power to change the world for my son, both directly and by  changing the perception of autism.

And I am finally comfortable in my skin and with my place.

The Long-Awaited, Much-Anticipated IEP Meeting

A very accurate representation of the amount
of paperwork generated on my kid during
the IEP process.

The IEP has come...and gone.  In ways, it's a relief.  As many other special needs parents will certainly agree, evaluations, meetings, and decisions about our kids' programs (both therapeutic and educational) bring all kinds of anxiety.

In fact, I'm starting to wonder if I'll ever stop feeling anxiety.

Last Friday, as promised, the educational diagnostician brought a draft IEP and the reports that she could to Jack's school so I could review them before the meeting.  I'm very glad I did.  The results from the evaluations were sobering to say the least.  As my personal Facebook status read last Friday, "...does it ever get any easier reading what your child can't do?"  

I can answer with a very confident "No, it doesn't."  I knew he would test low, but I did not imagine he would test quite as low as he did.  It's always a reality check when I read these reports on my boy.  I try not to use it as a barometer of his potential for future success, but I think that parents can't help but worry.

It's good that I read it now, because I needed to have a good cry over those results and I needed to NOT have that good cry during Jack's IEP meeting...because that's what would have happened.  It still hurts, and that's not to say that I didn't keep a lump in my throat the whole time, but at least it lessened the blow.

I had also heard to bring food to the meeting, so my mother-in-law provided coffee, while we got an assortment of muffins.  After all, when you get a group of women together, the best way to make everyone happy is to provide something to eat that is, preferably, sugary.  I know...I'm a chick, too.

We also had a list of draft IEP goals.  I had read 3 (yes, 3) WrightsLaw books on IEPs.  I felt as though I was as prepared as I could be for a process which everyone claims can be rough and an fight.

So, imagine my surprise when it wasn't!

For those of you who haven't been through the IEP process, I'll give you a brief rundown on it as I go.  Bear in mind, I'm sure that every school/school system does it a bit differently.

We first did the eligibility portion of the IEP meeting.  For those of you not in the special needs world, your child has to qualify for services through the school system or through EI agencies like BCW.  Your child has to score below a certain standardized score on 2 standardized assessments in order to qualify in certain categories.

There are several eligibility categories your child can qualify under, including designations like "significant developmental delay", "speech-language impairment", and "autism".  You'd think that having an autism diagnosis would automatically qualify you for an "autism" eligibility, but it doesn't.  Conversely, you can potentially not have a medical diagnosis for your child (your child hasn't been actually diagnosed by a medical doctor), but the school system can still give your child an "autism" classification because they meet the criteria.  So, an autistic kid may not be classified under "autism", but an undiagnosed kid might.  Make sense?  No?  Don't worry, you're not alone.

During this portion, each evaluator (there were 5 total) explained their testing, their observations, and the results of their particular portion of the evaluation.  This part, in and of itself, takes a while.  Afterwards, we went over Jack's strengths and weaknesses, as we've done many, many times before.  Then, we established his actual eligibility categories, which we determined to be autism for his primary category and speech-language impairment as a secondary category.

Now, why is getting an autism eligibility a good or bad thing?  Well, from what I gather from the IEP team, having the autism eligibility gives us more options for Jack come kindergarten.  However, most children his age don't get an autism classification at school.  Why?  I imagine that most who are autistic haven't been diagnosed yet.  Anyways, it's a good thing, I guess.  I like having options.

Second, we went about the business of hashing out his actual services and placement.  Placement comes first.  Schools have to provide children with a free and appropriate education in the least restrictive environment.  So, for most children, that's a typical class.  For special needs kids like Jack, it can be many things.  It might be a typical class with no support.  It might be a typical class with a 1:1 aide.  It may be working in a resource room or being in a team-taught, or inclusion, class.  Or, it might be in a self-contained special education class.

For preschool, options are limited in our area.  As I discovered, almost all private preschools won't admit Jack because of his delays and the amount of support he needs.  However, we always have the option to choose a private, typical preschool without special education services.  We also could send him to a private preschool for autistic children.  Again, that would be outside of the school system.  Our other option would be to have therapy provided at school, but more like it would be for a private therapy, where we'd have a set weekly appointment with a therapist but no classroom time.  The final option would be to send him to a public preschool special education program in a self-contained classroom at a local elementary school.

Ultimately, it was recommended that we accept the self-contained preschool special education classroom option, and we agreed.  There isn't a typical preschool that would be able to handle Jack, nor would many accept him due to his lack of toilet-training and self-feeding.  We also have not found a preschool program for autistic children that is both close enough to home, in our price-range, and does not provide an intensive-ABA program (we don't want that).  He will go approximately 3 hours daily, 5 days a week.

Next, we needed to determine the frequency of services for Jack.  Being in the preschool special education class and having a speech-language impairment classification as well, there will be a speech therapist in Jack's classroom 2 days every week.  So, it works out to about an hour of speech weekly for him.

The big question was OT and PT.  We knew Jack would qualify for OT, but PT was more iffy.  He has motor problems, but did they have educational impact?  Well, the PT who evaluated him felt that they did and that he'd need PT support at school.  So, Jack will see the PT 30 minutes a week at school.  The OT that did Jack's evaluation felt that Jack needed intensive OT support at school, so he will see the OT for 1 hour a week at school.  We thought that PT might be a fight and we thought we might have to fight for an hour of OT, but it was offered without us even fighting for it.  What a blessing.

But...that's not all!

The next question that came up was that of Extended School Year services, also known as ESY.  Essentially, it's a few weeks over the summer when a child can continue to get IEP services at school.  Well, I had honestly not given much thought to ESY, because everyone had been telling me that no one gets ESY.  Imagine my surprise when they said they were recommending ESY for Jack!  At first, they thought we could reconvene at another date to give us time to decide on ESY, but we decided to just go for it.  We had thought of putting Jack in a camp this summer anyway, so ESY will just take the place of that.  He'll get preschool, speech, and OT at ESY over the summer.

And we didn't have to fight for it.

While I don't want to let my guard down, this was the most wonderful thing about Jack's IEP meeting...I never had to fight.  Also, I went in without an advocate, which was something many people had recommended, and I did it myself (with Brian and my MIL's help, of course).  That is so empowering...to feel like I have the ability to get through these things and help my boy get what he needs.

So now we wait for school to start in one week.  While I feel better, my focus has turned to getting my boy ready for what will surely be a huge upheaval in his life when he starts school.  That, and a part of my heart really hurts at the thought of him being gone for several hours a day.

What can I say...I'll miss my baby.

Additional Blessings

The coolest thing
my kid will EVER get.

I never thought I'd be saying this, but I heart Medicaid.  Seriously.  At least at the moment I do.  I reserve the right to completely do a 180 on that later.

As you may know, Jack currently receives Medicaid through a special waiver program for children with disabilities called the Katie Beckett Deeming Waiver.  Just to give you a brief idea of how Medicaid works to cover therapy, you get a certain number of "units" each month per therapeutic discipline.  A "unit" is one billing code.  So, say you get 8 units a month.  That might be plenty for you if your therapist bills 2 codes per session (like one for feeding and one for speech).  However, if each billing code is, say, a 15-minute block of time, then 8 units a month might only cover 2 sessions.

However, Jack's therapy team is totally on the ball.  We have been trying for months to get UHC to cover additional therapy sessions for Jack, so that we could bump up his frequency for both OT and speech to twice-weekly.  UHC outright refused to not only cover the additional sessions, but to cover even weekly sessions for Jack, which helped light a fire under my butt to apply for Medicaid.  However, this isn't a rant on big insurance...

Jack's therapy team submitted for pre-authorization for Jack to get twice-weekly speech and OT as soon as we heard he was approved for Medicaid.  I wasn't sure what to expect, but I tried to maintain my optimism.  Within this past week, we found out that Jack was approved for the twice-weekly frequencies for both therapies...effective immediately!

So, within the past week, Jack has started going to speech and OT twice a week.  Jack's OT had openings to take him on for a second session, but his speech therapist did not.  So, he still sees the speech therapist he's seen for the past year, but we've added an additional speech therapist to cover the extra session...and she's awesome.

Jack's schedule is suddenly much more jam-packed with therapy.  At first, I was worried about this and burning him out, but several people reminded me of one thing...he doesn't know any different.  Other kids his age spend their days at play, at the park, and in play dates, but Jack spends his in therapy.  That's all he knows.  We've had therapy frequency increases before, and while it's an adjustment to the new schedule, we always get used to it.

It's a great thing, though.  It's well-known that intensive, early intervention leads to the best outcomes for children on the spectrum and I'm so blessed and thankful for Jack's therapy team (and Medicaid!) for making this extra therapy possible.

But...that's not all!  There's more!

About a week ago, I heard about an assistive technology grant for young children with disabilities.  There have been several items that we've looked into getting Jack before, including compression garments, weighted toys, and a platform swing, but which can get pricey, so we held off.  Once I heard about the grant, I brought it up to Jack's OT and she agreed to submit it for us so we could give it a shot.  We decided to go for the gold and apply for all of the items that were on our AT wish list for Jack.  A few days ago, we submitted the proposal by email and kept our fingers crossed.

Honestly, I wasn't sure we'd get it.  We asked for 5 items total, including a platform swing and ceiling mount that was worth about $700.  You never know if you don't try.

Imagine my delight and surprise when I hear yesterday that we were approved for all of the items!!!  Jack's getting compression shorts, a compression shirt, a weighted shoulder snake, and...the big ticket item...a platform swing!!!

For those of you who may not get why I am so delighted at this, let me just describe what these things do for my boy.  They help calm his sensory system down so that he can attend to us better.  They keep him organized and regulated.  They keep him from melting down.  They make learning and engagement possible.  As I said last week, Jack needs a constant "fix" of sensory input, through pressure (like weights and compression) and movement, to keep calm and regulated.  It's a real challenge for him to stay regulated.  He can't do it on his own.  He needs these things, this input, to help him do just that.

So, this grant is providing us some of the tools to help my boy stay regulated.  To help him stay happy and calm.  To help him learn.

My heart is overflowing.  Truly.  Again, I have to thank Jack's OT for her hard work getting this grant proposal put together.  I also have to thank Easter Seals for this grant opportunity and for approving my boy to get the assistance he needs and we so desperately want to provide him.

There have been times in the past when I felt that this was an uphill battle and that I had very little fight in me.  However, this week, to see some of my advocacy, and the advocacy of others, produce tangible results that can benefit my boy, well, it renewed my spirit.  I am incredibly grateful for the generosity of others with regards to their time and efforts to help my boy.

Today, I consider myself blessed.

Guilty Pleasure

I told myself I'd never be one of "those" stay-at-home moms.  Up until now, I haven't been, but I have a confession to make.  During nap time, I'm doing something that I enjoy so much and yet am so embarrassed about.

I'm watching the Dunwoody Day Care Murder Trial online...and I can't.  Stop.  Watching!

I'm really ashamed of it, too.  It's the personal story - the personal tragic story - of someone who lost their life to a murderer.

So why the hell am I watching?  And why can't I stop watching?!?  It's not like I am an aspiring lawyer!  Hell, being married to someone in the legal profession just convinces me more that I do not want law to be any part of my future career plans outside of being an autism mommy.

Perhaps that's it...it's because it's outside of my reality.  It's something that is so far away from the world of autism, testing, IEPs, and Medicaid.  It is beyond Floortime, therapy, and sensory diets.  It is the stuff that gives birth to Law and Order.

After all, it has everything on which good formulaic crime dramas thrive.  There is a homicide obviously, plus an insanity defense and inklings of tawdry affairs.

This has me wondering...what is it about things like police chases, murder trials, and other train-wreck-like events that makes it so we can't stop watching?  For the record, I count Jersey Shore and Teen Mom 2 in that same category.  Is it a morbid curiosity with the misery of others?  Or, is it that "stranger than fiction" allure?  Or maybe it's that the average lives of the average people are so boring that something so far beyond our reality is appealing (not that we'd want to be on trial for murder, be involved in a high-speed chase, or live next door to Snooki)?

I don't know what it is, but psychologically we are driven to this phenomenon.  Think about when you are driving down the road and see a car accident.  What causes the most traffic congestion associated with that accident?  You've got it...rubbernecking.  That's why traffic builds up on the opposite lanes of the highway when there's an accident; everyone stops to take a peek.  So, courtroom drama, pregnant teenagers, and other incidents become TV's version of rubbernecking.

We all do it, don't we?  If not this, I'll bet that every stay-at-home mom out there does something about which she once said, "I won't be that mom".  So, my question is, what is your guilty mom confession?  Have you turned into a soap opera junkie?  Or do you watch murder trials?  Are you a crafter? Or...do you (gasp!) drive a minivan?

What is your mom confession?

Saying Goodbye

I have some exciting news about Jack getting more therapy units from Medicaid and a grant opportunity, which I promise I'll talk about soon, but today isn't the day for that.  Today is a day for saying goodbye.

As Jack transitions out of BCW, many things will change.  He'll gain new providers, but he'll also keep the therapy team he's known for the past year.  We'll simply be adding new faces through school and the clinic.

However, there is one provider that we no longer have the option to keep.  It's sad, but IDEA Part C says that it's time to say goodbye to our service coordinator.

Under IDEA Part C, which is the portion of IDEA that deals with early intervention services and creates state agencies like BCW, every eligible child under Part C gets a service coordinator.  This is a social worker who comes out to your home periodically and helps navigate the BCW maze.  They help set up your IFSP (Individualized Family Service Plan, the Part C version of an IEP), they do 6 month reviews of your child's progress, they help coordinate services, and they serve as a go-to person for various questions you might have.

Our service coordinator has really come to bat for us several times while we've been a part of BCW.  I complain about BCW a lot, but our service coordinator has little to do with that.  When BCW tried to yank funding for Jack's special instructor when he began to receive aquatic PT through them, his service coordinator took up his case and invited me to their team meeting so that I could tell them, as a mother, just how much my son needed special instruction.  They didn't doubt that he needed it, but it was all a matter of funding.  In the end, they agreed to continue to fund both Jack's aquatic PT and special instructor until he aged out of the program.

As our service coordinator walked me out to my car, and produced the paperwork for me to sign to resume BCW-funded SI, that she prepared just in case we won, she said that she was so glad to get Jack what he needed and she was going to head back into the meeting to take the verbal lashing she knew she'd get from her superiors.

I felt awful about that.  However, it meant the world to me that she was willing to take that lashing for Jack.

So today we have our exit appointment with our service coordinator and face the reality that we are about a week and a half away from the transition.  I gave our service coordinator a nice card and a Starbucks gift card (because I'm sure it takes a lot of caffeine to deal with people like me) and said our goodbyes.

To those of you out there, the social workers and coordinators who spend your careers helping families like mine, going above and beyond what your job description requires simply to help my child have a chance at a better life, I thank you.  Sincerely.  We talk a lot about therapists and how awesome they are, but there are also unsung heroes in this game.  The people who populate offices and know you by name and are willing to make the calls they need to make to get what your child needs.  To the social workers, coordinators, and helpful office staff, we thank you.

I humbly ask that each and every one of you give a small "thank you" to one of those unsung heroes.  You just might brighten someone's day.

Full Disclosure

Can we also ban intolerant jerks, too?

I was on a message board the other day (what can I say...naptime gets boring), when I read a post by a person who was annoyed that a children's play she attended was noisy because of the presence of a class of special needs children.  The solution posed was that audience members might be alerted to the fact that a special needs class was in attendance, that way audience members could decide for themselves whether or not to attend.

I had to respond.

This is a debate I hear come up often, and in many different contexts.  Essentially, it boils down to this - do the rights of the special needs child to be included trump the rights of the person who does not want to be disrupted by the noises and behavior that can be a manifestation of our child's disabilities?

I may be biased...okay, I am biased...but I would say that my son's right to inclusion trumps the annoyance a person feels at his presence.  Legally, my son has a right to inclusion; however, the person who is annoyed doesn't have a right to not be annoyed.  Since you can't change the fact that some people will be annoyed or disturbed by his behavior, I have learned to simply ignore (when I can) the comments and stares.

But what about disclosure to audiences that their experience will be shared by individuals with special needs?

I have problems with this, too.  As a parent, I feel as though it's my right to disclose to my son's disabilities as I see fit.  Being an asshole doesn't always earn you the right to that disclosure.  On the same token, I would not appreciate it if my son's class had to be identified to the entire audience at the play as having special needs.  To the average person on the street, it's none of their damn business.

Second, I feel that alerting audiences to special needs kids amongst them seems to imply that there will be a disruption that will take away from their experience.  That's simply not always true!  The fact that my son is autistic does not mean that he will scream and meltdown in every scenario.  Some, yes, but all, no.  I think it sends the wrong message to audiences that special needs kids always bring disruption.

Besides that, I feel it's a step in the wrong direction.  Autism now affects 1 in 110 children in our country.  It's more common than diagnosed cases of pediatric AIDS, cancer, and diabetes combined.  When I was younger, you never saw children with disabilities in schools.  They were segregated off in their own wings and never offered inclusion.  Now, inclusion is becoming more and more common.  If you have children Jack's age, your children (I guarantee you) will be in a class at some point with a child with an IEP.  Your child will likely know children with autism, whether you realize it's that child's diagnosis or not.  Seamlessly including children with special needs whenever we can has become the norm, and labeling them for the purposes of making the lives of others more "enjoyable" is a purposeful step away from that goal of seamless inclusion.

It's the same reason I dislike policies by restaurants to bar disruptive children.  Not all children are disruptive because they are being brats.  Some are disruptive because their behavior is a manifestation of their disabilities.  Is it right to prevent parents from bringing their children out in public because it might inconvenience others?  And to those who say that it should be okay to bar disruptive people from restaurants catering to adults (nicer restaurants), I would argue that there are adults with disabilities (like autism, Tourette's, etc.) who have similar behaviors that might disrupt other customers.  Excluding them from a nice meal is not appropriate, either.

My wish is that people would begin to look past the behavior and see special needs children for the assets they have to offer, rather than assuming the negatives of the diagnosis.

My Hypothetical Trip to Japan

The few who know me very well know that I have a love for sushi and Asian foods of all types.  What you may not know is that my dream vacation is to take a huge (we're talking month-long) trip across Asia, visiting Japan, China, India, and Thailand.  If I were younger and just out of college, I'd attempt such a trip on my own, living out of my backpack and off of my savings.  However, being a mother tends to derail such ideas, so my current wish is to simply be able to have a taste of this trip with my husband, and hopefully Jack, one day.

Japan is the destination I've most looked forward to visiting.  A big wish of mine right now (you'll notice it on my Life List) is to learn another language, and I'm just about sold on Japanese in preparation for my hypothetical trip (Rosetta Stone's not cheap, though).

Why Japan?  Well, it's a brilliant mix of East meets West, with a culture that is equally unique for it's place in the modern world.

On my trip, here are some of the adventures I'd like to undertake:

Visiting a Temple or Shrine:  I think that this is what people think about most when they think of travel to Japan.  I personally love the peace and tranquility that religious sites offer and I can't wait to experience this in Japan.

Taking a Hot-Spring Bath:  The Japanese have wonderful natural hot-spring baths that overlook beautiful countryside views.  You can soak in near-scalding water while taking in the landscape.

Participating in a Festival:  Japan has religious festivals nearly weekly with brilliant displays and parades.  I'd love to see one (this is something I want to do in India, too).

Eat Japanese Food:  This may be a given, but I'd like to experience actual sushi and, my favorite, sashimi. I never tire of it.  I'm also a fan of street food, and I'd love to experience some of the foods that the locals eat.

Ride the Shinkansen Bullet Train:  I guess Jack's love of trains must have rubbed off on me, but this is Asia's fastest train with speeds up to 180 mph.  You get to eat boxed meals and take in the countryside at astonishing speed.

Visit the Tsukiji Fish Market:  One of Japan's largest local markets located in Tokyo.  I'm a big fan of farmer's markets, and I'd love to see what the Japanese like to purchase for their own consumption.

See a Kabuki play:  This is a very extravagant form of theater in Japan.  I've seen a lot of horrid theatre here in the US, so maybe the Japanese can change my mind about the theatrical arts?

See Mount Fuji:  While I'm not sure I'd want to climb it (you can only climb it in the summer), I'd love to see Japan's tallest mountain.  However, maybe I'll get particularly inspired and climb it!  I think it takes basically 15 hours, though.

Visit Kyoto: Being the capitol of Japan for well over 1000 years, Kyoto has some of the best of ancient Japan.  I've heard that if you visit one city in Japan, this is it.

See a Japanese Tea Ceremony:  While I've heard that many nicer hotels do this, I'd far prefer to see one in a more idyllic setting, like a garden.

For now, I can only dream of a chance to briefly travel to a country that has been on my list of places I must see.  For those of you who have gone to Japan, or have lived there for a while, what other ideas do you have for my hypothetical grand Japanese tour?

Speak Only Kind Words

This may seem like a rant...

I guess that being a special needs mom has given me a unique perspective.  I see the world in a different way these days.  Things I might would have found funny in a previous life seem so much less so now.  On the contrary, the simple things, like my boy's laughter and beautiful smile, fill me with more joy than I can possibly contain.

I try to keep my blog free from negativity directed at a particular person or group, unless that group happens to be a government entity or a major insurer, but I think we can all agree that sometimes they deserve it.

I try to stay out of most of the common debates within the autism community.  I try to take the approach that all points of view are, for the most part, valid, and there is no one "right" answer to how to raise your child, special needs or not.  I think attacking various points of view is counterproductive and not necessary.

That being said, I'm going to have to attack the mean people in this post.

No, I don't have any particular haters...or at least I hope not!  You'd tell me if you heard of some Reinventing Mommy haters, right?

Back in December, I was pointed towards a blog, which shall remain nameless to protect the identity, because of a viral post about the lengths some parents go towards in the pursuit of the whole Elf on the Shelf tradition which I want to participate in so badly, but maybe not to the lengths that some families do.  I found the post funny and began to follow the blog.

However, every post on this blog was a rant about a particular person, way of doing things, or group of people.  Some were funny, admittedly, but all probably hurt someone.  While I haven't been attacked, it is a bit disheartening to see a blog gain popularity by making fun of other parents who are trying, albeit in their own way, to do the best for their children.

Consistently, when people would comment about the insensitivities of this blog, the overwhelming response from both the blogger and other followers was to comment on how everyone should learn to take a joke and how if you didn't want to be made fun of, you shouldn't put yourself out there.

Can I say that this is a common bully tactic?  You put yourself out there, you acted like that, you deserved to get teased and bullied, you were too sensitive.  The bully places the blame of the bullying on the victim.  It's what bullies from elementary school through adulthood do.

Let's face it, apologies aren't as entertaining and humorous.  Being a member of a group that pokes fun of others is.  It makes you feel powerful and better than someone else.  It doesn't make it right, but it is human nature.

Yes, this is a way to get blog followers, but I would like to offer a different perspective.  Hurtful words, whether said in jest or not, are still hurtful.  You may not care that it hurts anyone, but don't act surprised when it does and don't try to justify your actions and remove blame from yourself by saying that it was all a joke.

We all have to learn that our words have impact.  I tell Jack all the time as I try to drill it into his head that his words have meaning.  You say "More cereal bar?"  Then don't be surprised when you get one.

Our words have meaning.  If we say something that hurts someone, we may not change our opinion, but we can be remorseful that our words caused someone else pain.  That, my friends, is the true measure of being able to reflect upon our words carefully.  If we can look at what we've said and acknowledge that it was hurtful and that we were the cause of that pain, then we take a step back towards consideration for others.

I also say constantly that not everything needs to be said.  When people try to figure out what to say to us when they hear we have an autistic child, the best thing to be said is nothing.  Our child is autistic...it is what it is.  The same goes here.  Just because you have a thought in your head, that does not mean that you need to voice it.  Sure, you have a right to do so, but do you need to put voice to those thoughts?  I am a firm believer that everything we say and do should be spoken and done with the following thought - if this is the only interaction I have with a person, how would I want them to think of me?  If this is the only interaction anyone could judge me on, how should I act or speak so that I am judged in the way that I wish to be seen?

You are entitled to think and feel anything you want to think and feel - right or not.  You have the right to voice those thoughts and feelings.  In the end, not everything needs to be said.  Sometimes it's best if things go unsaid.

I would urge each and every one of you - don't be a hater.  Present yourself in a way, both online and off, that reflects the kind of person you truly would wish to be.  I'm not saying to not have these thoughts and to not perhaps share them on a limited basis with people who can thoughtfully listen and appreciate them, but when you post them for all to see you place them into a forum for people to take offense.

Therefore, we should all be more careful with our words.

Speaking of being careful with our words - you should really support Spread the Word to End the Word on Facebook or at http://r-word.org/.  This is another example of a word that people use far too frequently without thought as to the hurt behind it.  I've personally had to correct family members on it's use, and I'll call you out on it, too!  Take the pledge to stop using that word.  If you want to know why I feel so strongly about this, please take the time to read the following archived posts:

Someone Let Mama Bear Loose...

The "R" Word

Remember...your words have meaning!

The Week of Non-Stop Testing - Part Three (Psych! No, really...)

The third component to Jack's school testing, which actually came second in the sequence, was the psychological testing.  To tell you the truth, this was the component I was the most concerned about, simply because Jack has never had any psychological testing.  After all, he's a minimally verbal almost 3-year old.

Also, for full disclosure, Jack tends to test low in terms of cognitive ability.  When he was tested by BCW, he actually tested as having a significant cognitive delay.  Knowing that the primary component of Jack's psychological testing would be intelligence testing, I kind of dreaded what was to come.

Let me say this...I believe, in all honesty, that there are very, very few kids on the spectrum who have a real cognitive impairment.  I believe that there are multiple barriers that prevent our children from demonstrating their full cognitive potential.  I also believe that the standardized tests used to measure cognitive ability are not always appropriate for our children for two reasons, a) they assume an age-appropriate level of receptive/expressive language, in most cases, and b) they assume that a child can both attend to and interact with a clinician in the testing scenario, both of which are notoriously difficult for our kids to do and indeed part of their core deficits.

That doesn't mean that it mitigates bad test scores in my mind.

That Wednesday, we went into the testing and I had the expectation that Jack was going to struggle.  He did.  Understanding what was being asked of him was incredibly difficult in spite of the fact that the testing given to him was designed for children who are non-verbal.  Even with me feeding the psychologist ways to phrase questions in order to get a response from Jack, he was very non-compliant and non-reactive.  However, in all honesty, many of the tasks being asked of him were things that I did not imagine he could do.  As I mentioned in reference to his educational evaluation, Jack isn't matching objects.  So, it didn't surprise me when he didn't do it there.

Today, I did a very brief autism rating scale on the phone that was more of a formality than anything else.  Does he play appropriately with peers?  No.  Does he make eye contact during interactions?  Rarely.  Does he communicate in unusual ways?  Does echolalia count?  Then...yes.

The psychologist readily admitted to me that she cannot get an accurate result from most kids on the spectrum until they are in their middle school years.  However, I don't need a test to tell me that Jack is smart.  I know him and watch him.  When he's watching something spin, you can tell that his mind is running on all cylinders.  He has a photographic memory.  He remembers the color of every letter in every set of letters he has.  He remembers, with astonishing accuracy, every episode of Super Why!, right down to the placement of the letters, that he has ever seen.  I imagine that one day his mind will be able to take in astonishing amounts of information.  If we can only help unlock his mind, I am convinced he will change the world.

So ended our school testing.  It was long, but relatively painless.  I felt as though they got a good sense of who my boy is, what his challenges are, and what we need to do moving forward to ensure that he can access the curriculum and have the accommodations he needs to learn effectively.

His IEP meeting...the dreaded IEP meeting that we've been anticipating for the past several months, is a mere week and a half away.  Sometime between now and then, we should be receiving a draft IEP letting us know what we can expect.  I'm looking forward to getting past this and moving forward with the next phase of Jack's educational and therapeutic program.

On The Move

Our Indoor Gym net swing in Jack's therapy room.

One of the things I talk about often with Jack is his sensory issues.  Some people may not realize that one of his big sensory issues is his constant need for movement.  He is literally on the go all day long.  When he starts to struggle with regulation, movement helps his system get organized again.  (By the way, if you don't spend hours of your time in a therapy clinic, you may not know that the movement is known as vestibular input in our world.)

I know that being on the go isn't exclusive to kids on the spectrum, but kids with special needs tend to need more of this and in ways that might seem unconventional, for lack of a better word, to the rest of us.

Lately, it's been all I can do to feed this constant need for movement.  Not just any movement, mind you, but BIG movement, like going down slides, swinging, spinning, and crashing down onto couches or crash pads.  He also likes pressure, so to keep him from literally bouncing off the walls (it's happened before), we look for ways to feed that need.

It's like doing a non-stop workout with a 29-lb. weight.  It's exhausting.  So, I'm always looking for ways to make my job easier and provide Jack that movement he so needs.  His motor planning issues and low tone don't help, either, because I have to assist him far more in these activities.

Slip-sliding away.

With spinning, for example, Jack and I definitely couldn't see eye-to-eye on the issue.  Jack could spin for a good 40 minutes straight without getting dizzy.  I spin for 10 seconds and I'm nauseous.  So, we got Jack a chair from Ikea for Christmas (or rather, Santa got him a chair from Ikea) that is shaped like and egg and spins.  For a long time, Jack wouldn't use it.  I tried to figure out why, and this week I finally got it.  The chair has a hood that comes down so you can sit in the chair and be totally enclosed, and that's what he wanted.  He wanted an escape.  Once I do that, he'll spin until my arms get tired of pushing the chair!  He even says "More spin!"

We have a swing in his therapy room in a doorway.  The swing has a net that he gets cocooned in.  He loves it.  It provides pressure and movement.  No rotary movement, though, which is why we're looking into getting a grant for a big platform therapy swing for our basement that will do rotational movement as well as back-and-forth.  Fingers crossed that we'll get it!

We've also bought him for his birthday the roller coaster I've described in a previous post.  He'll need some help to use the roller coaster, but hopefully that'll provide him a good dose of the movement that he loves oh so much.

Once the weather gets nicer, we hope to return to the playground and the swings and slides we've loved before; however, we're well aware that we are likely to see more social challenges this year with going to the park and playground.  We've recently tried one of those indoor inflatables centers as well, but again he needs a lot of assistance and the social/sensory aspects with the children tend to stress him out, but it's an option for early mornings on rainy days.

I've even heard of parents from our Floortime class who let their kids "sled" down the stairs on a mattress and crash into a bumper of pillows at the bottom of the staircase.  Jack's a little young for that (I can see him flying through the air and landing *splat* on the wall), but I could see him enjoying a similar activity.  The trouble is balancing the need for extreme movement with the need for safety.

Parents with special needs kids (or not!), how do you feed your child's need for movement?  What creative ways have you come up with to help your children get their vestibular fix?

Nursing Guilt

How about being pro-feeding babies?

There is nothing, and I mean nothing, that can turn groups of intelligent, well-meaning women into absolutely b*!%$es more so than motherhood.

I read recently an article on the Today Show website about a New Zealand anti-smoking ad that turned controversial because it pictured a dad bottle-feeding his baby, saying that he doesn't smoke because he is a parent.

Now, what was so controversial about that, you say?  The La Leche League of New Zealand asked that the picture be pulled because it goes against the core message that breast-feeding is always best for babies.  So, the anti-smoking message wasn't nearly as important as the fact that the dad was bottle-feeding.

WTF?!?


A couple of on-face comments about this.  First, to my knowledge, dad's physically cannot breast-feed babies, therefore the only option available to them is to bottle-feed.  Second, who says that the bottle wasn't filled with pumped breast-milk?  Third, so what if it was formula?  It's a tender picture of a father bonding with and caring for his child.  Isn't that more precious than a single breast-fed meal?

I don't know why people get so heated about this topic.  Really, I could care less what people choose to do for their children.  I'm pro-feeding your kids.  As long as you're feeding them, I could really care less how it happens.

There are some facts about breast-feeding that are undeniable.  One, breast-milk, in most (not all) circumstances, is the best substance to nourish human infants.  That is true.  Two, the act of breast-feeding is more difficult for babies and promotes oral-motor development.  Third, from a purely cost-effective view, it's a hell of a lot cheaper than formula (believe me, I know).

That being said, it's not always an option for all mothers.  It wasn't for me.

When Jack was born, he was a plump 8 lb. 5 oz ball of adorable.  Since he was born at 37 weeks, just shy of being considered premature, we had an automatic referral to lactation at the hospital.  Lactation specialists were in and out of our room.  The first night after he was born, I thought that breast-feeding was going well.  The next day, during our first lactation appointment, I was informed that it wasn't going well.  Breast-feeding, within the course of a couple of days, went from being a natural part of motherhood to which I had anticipated with joy to something that I dreaded.

Our breast-feeding routine involved the use of a nipple-shield because Jack wasn't latching-on.  I had to nurse him for at least 15 minutes per breast (which turned into 30 minutes each because we couldn't stimulate him to keep eating) then we had to supplement him with formula or pumped milk.  After that, I had to pump for 15 minutes.  We did this cycle every 3 hours, 24 hours a day.  All this while I was recovering from an emergency C-section.

Jack struggled to latch-on to the nipple shield.  Eventually, he stopped latching on to it entirely.  My milk supply went down because I was basically only pumping.  Everyone, and I mean everyone, blamed me for the fact that my baby couldn't nurse.  "You must be doing something wrong, let's try with lactation again", the pediatrician told me.  Lactation told me to just keep with the regimen.  The problem was that I couldn't force Jack to nurse.  With great sadness, I switched to the bottle.

I've had people since give me a bit of flack about that decision.  "You just didn't try hard enough."  My heart broke when people said that, because they didn't know how hard I tried.  They didn't know that my boy just didn't seem to eat right.  That it seemed like he couldn't eat well with a bottle, either.  Fast forward two years, and he was diagnosed with dysphagia and determined to have oral-motor weakness and a poorly coordinated chew and swallow.  He still has this.

Can't we all just get along?

While I respect the push to encourage more women to breast-feed, I think that the lactation community should be understanding of the fact that some women, no matter how hard we want to, cannot breast-feed their children.  It's not always the mother's fault, either.  Some children are born with problems that inhibit nursing.  For those children, the bottle (or even tube-feeding, in some cases) is best, because the alternative is starvation.

Not unlike the debates we have in the autism community about vaccines/biomedical treatments/cures, it seems like mothers lose the bigger picture, which is to help our children thrive given the unique set of circumstances each presents.  Not every way of raising a child will work for every child.  As long as families do the very best they can with what they have, why must we all engage in these cat-fights?

I'd love to see us all commit to being more civil to one another and respecting the decisions each family makes regarding their own children.  As long as the babies are being fed, is it really worth the fighting over which way it happens?

The Week of Non-Stop Testing - Part Two (OT/PT)

Jack's Mt. Everest.

Yesterday brought Jack's last day of testing (I still have to fill out an autism rating scale over the phone on Monday).  We had Jack's OT and PT evaluations, so we headed back up to the school to round out the week.

He performed about as I expected, and I felt as though the school system got a good representation of his strengths and weaknesses, for the most part.

The OT part definitely went just as I'd expected.  Jack didn't perform as well for the school's OT as he does for the OT that he has seen for nearly a year.  So, no puzzles, no pegs, no building with blocks.  On the contrary, he wanted to drop the blocks and a light-up ball in front of his face over and over again.  I also filled out a sensory inventory for Jack, since they can't test every sensory scenario.

The one surprise from the OT portion was when they tested Jack's ability to track objects with his eyes.  He could track side-to-side and up-and-down, but when they tested his ability to track an object coming towards his eyes, he did something unexpected.  When you bring your finger in front of your face, say about arms-length out, and move your finger to you face slowly until it's touching your nose, your eyes cross to continue tracking that object.  In fact, if you try to not track it, it seems almost impossible to not cross your eyes; however, Jack's didn't cross.  They tested it a few times, and Jack's eyes didn't cross.

The PT portion went about as expected, too.  There were components where Jack was asked to jump (he can't), to walk backwards (they kind of forced him to), and his ability to maintain balance and right himself was tested.  They tested his ability to walk down the hall (she noted he walks really slowly, which I think may be a factor of being far to distracted and over-stimulated), to get up and down a curb independently (up was better, down was difficult and caused him to almost trip), and to climb stairs without assistance (he wasn't awesome with this).  I was surprised to learn that Jack isn't able to kick a ball.  I guess I'd just never thought about it, but I don't recall ever seeing him kick a ball.

The problem to me occurred with the stairs.  They tested him with the stairs leading up to the stage in the school's cafeteria.  That set of stairs is very narrow (about my width with a few inches of clearance on either side) and very small (only about 5 steps).  Using both hands to steady himself against the walls, he was able to ascend and descend that set of steps with some difficulty and a spotter.  The issue I had was this - that set of stairs is not representative of what he normally would ascend and descend at school.  At school, the staircases will provide him no additional hand-hold.  Unless he has a para-pro holding his hand at all times when on staircases, he has the potential to trip and fall.  I know...he split his chin open at one point last year when he fell trying to go up a set of stairs at the playground.  As for going down the stairs, that might be next to impossible.  At home, he crawls either the whole way or halfway up the stairs.  Going down, he either has to be carried or he scoots on his butt down the stairs.

Now, why would this set of stairs be such a big deal to me, other than the obvious safety concerns?  First, you have to understand the purpose of school PT.  Remember, schools don't have to provide the Mercedes, only the Chevy.  School PT only has to provide access to the curriculum, which means that school PT only has to provide what is needed to allow a student to maneuver around the school safely.  Things like climbing stairs and negotiating curbs fall under that category.

Clearly, he'll qualify for OT, but PT will be the wild card.  The PT reiterated the purpose of school PT to me yesterday and stated that she recommends that parents stick with their private PT.  So, what the hell does that mean?  If you know, please share, because it could either mean that Jack won't qualify for school PT and we should keep private (which we're doing anyway), or that school PT will only address climbing stairs and negotiating curbs, in which case we should keep private PT to address his coordination, hypotonia, motor planning, and other delays.

I know that I've tried to explain this to family members before, who don't seem to understand why the schools, if they have a PT, won't provide PT to address all delays.  Well, because legally they don't have to.  Speech and OT issues all affect a student's ability to learn and access the curriculum, but mobility doesn't necessarily fall into the same category.

I'm going to be optimistic.  We really want school PT, because it's difficult to address the issues with stairs in an aquatic setting, so Jack's private PT was hoping that the land-based PT he'd get at school could help with that.  Fingers crossed...we'll find out at Jack's IEP meeting, which is less than 2 weeks from now.

The ABLE Act and Why It's Important

(Image Source: Autism Votes)

For those of you who have children with disabilities, how many of you are saving for your kids' futures?  Do you have college savings accounts set up?  Do you have provisions in your wills for your assets to go to your children?  You just might, because that's what parents do for their kids...they plan so that their children can be provided for in their absence.

For families with children with disabilities, we don't have that same flexibility.  Our kids need support, often significantly more support in the future than typically-developing children do, but our hands are tied.  It's a shame, it's unfair, and it simply needs to change.

You might be wondering why the parents of special needs children struggle with issues of financially planning for our children.  Two big reasons - SSI and Medicaid.

For those of you who aren't aware, I'll give you a brief run-down on what SSI and Medicaid are.  SSI (Supplemental Security Income) makes monthly payments to people who are either a) 65 and older, b) blind, or c) disabled.  SSI will make payments for disabled or blind children, but eligibility is determined by their parents' assets and income.  The income cap for receiving SSI is really low, a lot of disabled children don't qualify in childhood, but as adults, if they cannot work, SSI payments kick in.  SSI can only pay for certain things, like housing, food, etc.  To my knowledge, it doesn't pay for anything Medicaid pays for, because you automatically get Medicaid if you have SSI.

Medicaid is also income-based.  However, children who are not eligible for SSI can still get Medicaid through a special program offered in some states (sometimes called TEFRA or Katie Beckett Deeming Waiver).  This program deems that the parents' income and assets should be waived for a child who has significant disabilities but can still be cared for at home (there are separate Medicaid programs for nursing home care).  Thus, all you're left with is the child's income and assets (which are often $0) and the child qualifies.  This is how Jack receives Medicaid.

Those two public assistance programs are absolutely critical to special needs kids and their families.  Insurance doesn't cover very much for therapy and the Georgia state legislature has been woefully behind the ball in implementing autism mandates in our state.  Without Medicaid, Jack's therapy bills alone would total thousands (yes, thousands) of dollars each month.  No family can afford that.  That doesn't include medical bills, which can be costly at times.  As for SSI, if Jack can't work as an adult, he'll obviously need public assistance to help provide for his basic needs.

Both SSI and Medicaid have very low caps for income and assets.  That includes checking and savings accounts in his name.  If Jack were to have more than $2000 in cash and assets at any given point, he would lose eligibility for SSI and Medicaid.

You can see where planning for the financial future of a special needs child would get difficult.  We have to plan in a way that we can shelter those funds from SSI and Medicaid.  The only option this leaves most families is to establish a special needs trust.  Special needs trusts are accounts designed to shelter money from SSI and Medicaid, but they come with their own pitfalls.  First, the money in special needs trusts can't cover anything that SSI and Medicaid will cover.  So, no housing, food, medical bills, etc.  There are ways you can get around it by paying a stipend to a "conservator", who then pays those bills on behalf of your child, but then you have to trust someone else to do right by your child.  Second, they are incredibly difficult to dissolve.  If you establish a special needs trust and your child no longer needs it, it is difficult to get that money out of the trust.

So, special needs trusts are not the ideal way to go.  This is where the ABLE Act (Achieving a Better Life Experience) comes in.  It would amend Section 529 of the Internal Revenue Service Code to allow individuals with disabilities, and their families, to deposit money into a tax-exempt savings account that would supplement, not replace, benefits through public assistance programs like SSI and Medicaid.

Does Section 529 sound familiar?  It might, because you might have a 529 college savings account for your child.  This would allow families of children with special needs to save for our children's futures in almost exactly the same way as you save for your typical children.  It levels the playing field.

I think that this program is an incredible way to secure the future of Jack without the worry that goes along with traditional special needs trusts or the risk of the loss of Medicaid and (one day) SSI for him.

I would urge each and every one of you to please go to Autism Votes and send a letter to your Congressperson urging them to cosponsor and/or support the ABLE Act.  Allow families like mine to set aside money to help provide for our children in the future, rather than leaving us to send our children into an uncertain future in which they are dependent on other means of financial assistance which may or may not be available to them.

Thank you for your support of kids and adults with special needs!

Want to get involved and send a letter to your Congressperson?  Click here!  It only takes a moment and will make a difference in the lives of families with disabled children.