And So It Begins…

The first week of kindergarten is officially over, and I’m utterly exhausted.  At my house, it’s so much more involved than new shoes, backpacks, and lunch boxes.  It’s extra classroom supports, medication coordination with the nurse, and a love-hate relationship with the afterschool program. 

Connor was nervous, but was excited to be wearing his new sneakers.  There were no tears as we walked him to class on the first day.  The tears came later that evening, but they were my tears.  On day one, I picked him up at the YMCA after school program, in his school’s cafeteria.  The staff was waiting for me with a write-up, and that look.  I hate that look, I’ve seen it so many times before.  The look of bad news, and of people that already can’t stand dealing with my kid.  The look immediately fills me with both dread and anger.

Connor was standing on chairs, running down the hall, not listening, walking away from staff, yadda, yadda, yadda.  We talked about his challenges, we talked about the first day being difficult and confusing.  They asked me how to support him, I gave suggestions, they reminded me several times that they can’t provide one-on-one support.  I grew angry.  I told the director to put in writing that they can’t serve my child, he backed off and said they’re willing to work with him.  It was a standoff.

The big problem is that there are not programs designed to accommodate children with disabilities.  Period.  Beyond that, I strongly advocate inclusion.  I don’t want my son segregated, and with autism numbers growing exponentially, programs need to get on board and beef up staff to start providing services to all children.

We hammered out some short-term behavior supports, and his behaviorist will come meet with program staff next week to discuss ways to work with and support Connor.  Until then, I feel like I race the clock to get there every day, and oftentimes I feel like a pariah.  Why in the hell should I feel like this?  My kid acts out because he doesn’t know how to tell you that he’s overwhelmed, confused, scared.

I’m trying to hold down a job I hate, to support my family, and can’t find after school support that wants to understand and work with my son.  I can only wonder what single parents do.  Texas has left me underwhelmed with their negligence in planning and providing services for the disabled population.  If only we had known this before our move here.

And on Friday came the call from his teacher.  A few instances of hitting, leaving the classroom without permission once, and difficulty sitting still and staying focused on activities.  Yeah, yeah, I know. 

I have to believe things will get better.  This can’t be a snapshot of my son at 8, or 12, or 16.  Of course at those ages, things could be worse.  But I can’t even entertain those thoughts, I have to stay rooted in the present, which isn’t pleasant either.

I wish these people could see Connor like I do:  laughing, smiling, saying funny things, hugging, kissing, tickling, sharing. He does not hit at home.  He does not walk away from us.  He follows us everywhere, and sweetly shares his crackers, and asks permission before he does things.  And he says “Mommy don’t be sad, don’t cry.”  And then his arms are around my neck, and he is wiping my tears and kissing my cheek.

And then I know that I will never stop fighting.  He is worth every tear, and every pitying look, and every dreaded phone call.  And someday they will see what I see.

Goodbye Summer!

Connor in the pool

I HATE summertime.  It’s not just because I have a natural aversion to being hot and sweaty, as well as a body genetically made for layers of sweaters and parkas, but also because of the “childcare” issue.  Summertime means five full days of care for my son, preferably somewhere that can handle his challenges and still provide a fun environment for him.  This summer was definitely a challenge, as well as a learning experience.

Since he completed pre-K this year, and is due to start Kindergarten, we thought long and hard about the best option for him during the summer.  Although he attended a childcare facility last year that specifically works with both disabled and regular children, their cost exceeds $900 a month, which would be a significant impact to us.  Besides that, we really wanted to try and ”mainstream” our son in a program, since his school is placing him in a regular kindergarten class.  We thought it would be a good experience for him, and hopefully prepare him for the coming school year.

With all this in mind, we decided to put him in the YMCA’s summer day camp program.  Holy cow!  On the first day, we took our son to his elementary school campus, where the Y was having their day camp program.  There were well over 100 kids in the cafeteria already.  As I spoke to my son about being good, listening, etc., I already knew we were headed for trouble.  That’s an awful lot of kids in one place at one time for there not to be trouble.

On the 2nd day of camp, I got the phone call.  Connor had hit other kids a number of times, and was being “suspended for 3 days.”  So much for the director’s assurance on the phone that they were capable of working with children with special needs.  So, I leave work and hope that I will have a job to come back to at the end of the week.

After many phone calls to the Y, we decided to move my son to their day program at another school campus, a couple of miles away.  The number of children there was 90, as opposed to the 150 at his campus.  There was also a lead counselor there that was very experienced in working with children with special needs. 

Although no program is perfect, I have to say that the Y really made great efforts to work with us.  The lead counselors at the other campus were great, and worked so beautifully with Connor.  The unfortunate part is that in the afternoon they leave, and other “non-lead” counselors take over.  The majority of the challenges with hitting occurred during the afternoon hours, with counselors that did not understand his needs as well.

Connor made it a total of nine weeks in the summer camp program before we made the decision to pull him out.  For the last three weeks, he spent the days with his respite provider, and two or three other children.  It was a much smaller group, and provided a way for him to wind down before the beginning of school.  I wish I could say that the hitting stopped, but even in the small group it continued.

All in all, I have to say that the summer experience was a positive one.  I could dwell on the negative, and mull over what didn’t work, but what’s the point?  The fact that my son lasted nine weeks is a huge accomplishment.  There were many good weeks, and some not as good.  But he had the chance to be included in regular activities with regular kids, and had a great time.  I think it was a great opportunity for him to do some great activities, and learn to get along with others.  Well, try to learn, at least.

I may not be able to say that he is 100% ready for kindergarten, and there will be no behavior issues, but of course, I can’t.  I do, however, think he is much more prepared than he was, and I know he will have additional supports in place at school that he didn’t have at summer camp.  I am so proud of him for trying, and never once being afraid.

He is my hero.

The Tangled Web I Weave

I’m no saint, but I never really considered myself a “liar”, per se.  Oh sure, there have been the occasions of withholding information, or only telling a half truth, like when my friend’s skirt is way too tight, but I say she looks great.  And yet now that I’m a parent, the phase that is the most critical test of my moral core, that I find myself not just skirting the truth, but tossing it aside completely.

When my son was younger, around three-years-old, he developed a habit of fidgeting with the car door handle and lock.  Of course the child safety latch was set, but the fiddling still bothered me.  So I would hit the door lock button from the captain’s seat.  He was instantly mesmerized by this, and I explained that Mommy knew magic, and if I waved my hand I could make the door lock.  This actually became a happy pastime while driving in the car, until the novelty finally wore off.

Soon, I moved on to bigger acts of deceit.  About this same time, Connor had a fascination with rolie polie bugs.  He stopped at every singe rolie polie to look at them and say “hello” or “good morning.”  To my dismay, each morning as we were leaving the house for work and preschool, there was a march of the rolie polies across our driveway.  And I mean hundreds of them.

Thus began my adventure in the parental lying trap.  “Honey, leave the rolie polies alone, they’re on their way to rolie polie school, and they’re going to be late.”  What do you know, it actually worked.  In no time, we were in the car and he was waving goodbye to the rolie polie army in the driveway.  YES!  It was all the reinforcement I needed.  I expanded upon the theme when we got home in the evening, by explaining that the rolie polies were being called by their rolie polie Mommies to come home for dinner.  I was now in the throes of a full-fledged parental lying addiction.

I think I reached the pinnacle of Liar’s Mountain yesterday.  Connor and I were in the car, and I happened to glance over my shoulder to look at him.  UGH!!  His finger was in his nose, a conversation we have had on more than one occasion.  “Get your finger OUT of your nose!”

“Why,” he asks.

Without blinking, I respond, “because boogers are afraid of fingers, and they will climb way up your nose to get away from them.  They like tissue and kleenex because they’re soft, and they won’t run away from them.”

Did I just tell my five-year-old that boogers are afraid of fingers?  Did I just attribute a personality to mucous, dust, and pollen?  Yes, yes I did (hanging my head in shame).  Even my sometimes morally questionable husband said, “you didn’t really say that, did you?”

Hey, don’t judge.  Life is so complicated, and I will unabashedly reach into my Mom toolkit anytime I need to.  Sometimes being a parent is like suiting up for battle.  You put on your armor and drag out your arsenal and you get through the day, over and over, one day at a time. 

Besides, I’m way more worried about having to come clean about Santa Claus someday.

The Tao of Poo…

Before my son, I never thought much about how my body functions.  I just lived my life, like most people.  I worked, I went to movies, read books, shopped, travelled on occasion.  Now I think about things like poop.

Admit it, if you’re a parent, then you have spent your fair share of time on the poop issue too.  It’s unavoidable.  With a newborn, you find out immediately that monitoring the color, volume, and frequency of poo is very important, and information the doctor will ask you about.  But who knew it would continue to be a hot topic long past the infant and toddler phase?

As with many children with special needs, our son was difficult to potty train.  He was almost four when we finally got him out of daytime pull-ups.  Once we made that transition, we soon noticed that something was amiss.  There was no poo.  Our son was avoiding this unpleasant activity by purposely “holding” it in.  He said he was afraid to go on the potty because it would hurt.  That makes sense, because when you hold it too long it becomes difficult to pass.

I never could have imagined the wide variety of toileting products on the market.  I actually managed to find a book called, “It Hurts When I Poop.”  So, he sat on the throne, and I read the poo book, to no avail.  He would usually tell me, “Mommy, I don’t want to have a rock-hard dinosaur poop.”  Ugh, a special thanks to the cartoon, Dinosaur Train, for throwing that monkey wrench into the process.  We got to the point where he went five days before I finally resorted to the dreaded suppository.  When the mudslide began, a fair amount of blood came with it.  I kept my composure while inside I was panicking.  Off to the after-hours care we went.

The doctor said it was probably just a blood vessel, and told me to start giving him Miralax in juice every day to help with regularity.  We have used it ever since, and no more “rock-hard dinosaur poop.”  We still notice that 2-3 days go by between “visits” to the potty for that particular visitor, but at least it’s better.  He knows it won’t hurt now because mommy puts special medicine in his juice to make it soft.

Now you might think I’m crazy, but I definitely still notice a correlation between behavior and my son’s poo schedule.  There are some days where he is just cranky, difficult, and belligerent.  And sure enough, it’s usually when it’s been a couple of days.  After he goes potty, the behavior seems to be much better.  The doctor doesn’t necessarily agree wholeheartedly with my poo/behavior theory, but I swear to you it’s true.  Imagine being backed up for a few days, how uncomfortable and irritable you’d feel!

Although things are easier these days than they have been in the past, I am really looking forward to the day when I don’t have to monitor poo on a regular basis.  That day will come, won’t it??

Labels, labels, labels, get your labels here!!!

Our son was diagnosed with “severe” ADHD in February, 2009.  He was three months shy of his fourth birthday, if that’s any indication of the level of hyperactivity and inability to focus that we were dealing with.

Although I was sad, there was also a sense of relief.  After having our son kicked out of two different daycares, and feeling like failures as parents on an almost daily basis, we now had some idea of what we were dealing with, and how to get started in finding ways to support him.

Our son’s ADHD was so intense, that unlike many parents, we did choose to try medication, even at his young age.  He was just completely incapable of sitting still for any length of time, constantly fidgeting, wriggling, touching, grabbing, spinning…anything you could think of to be in constant motion.  And I must say, the medication proved to be a blessing, helping him to slow down, and really be present in the moment.

Later that year, around October, we pursued an evaluation with the school district.  Our thought at the time was to see if he qualified for pre-K services, based on his ADHD.  We all got ready for the evaluation, which was two hours long, and chose not to give Connor his medication that morning.  We felt that the diagnosticians should see what he is really like, without medication, since we never know when medication will lose effectiveness for him.

After more than two hours of questions and observations and descriptions of our son, we prepared to go over their findings.  I think I actually stopped breathing for a moment when they said “mild Asperger’s Syndrome” and sat there stunned.  I wasn’t ready for that.  I was prepared for ADHD, and had become accustomed to the thought of it.  But the idea of austism felt like doors were slamming shut.

What about his future?  What about college?  What about independence and a family of his own?  These thoughts swirled in my head while the diagnostician sat explaining school services to us.  And then she was pushing a box of tissue toward me, and I realized that silent tears had begun cascading down my face.  I heard her saying “it’s really very mild, and he can still be successful.” 

Just make it go away.  Make it stop.  Take all those words back, and give me back my son, before your evaluation, before your “analysis”, before the “A” word.

But this is life, and there is no going back, there is only going forward, with all of our courage, and all of our resolve. 

Needless to say, my son qualified for pre-K services.  He now had two “A” diagnosis’ to entitle him to services.  Although the ADHD was the most noticeable, I was also now allowing myself to see some of the Asperger’s qualities too.  They were always there, but I felt comfortable putting them in the ADHD bin.  But now I would face them, and we would work on them together.

All of this led us to yet another evaluation.  This one was with Travis County Mental Health Mental Retardation.  I hated that name so much, and they recently changed it to Travis County Integral Care.  In Texas, this county agency coordinates services for the disabled population.  Their evaluation, much like the school’s, lasted about two hours.  However, their diagnostician simply went through her booklets of special tests, asking us questions like, “Does he have a preoccupation with one or more stereotyped and restricted patterns of interest?”

“No.”

After a barage of questions, she told us that she didn’t believe he “fit the criteria” for Asperger’s, but she would put him in the PDD-NOS category.

I don’t know why, but it enraged me.  I began crying, and my voice got louder and louder.

“Every place we have been for an evaluation, has given us a different label to attach to our son.  I don’t think anybody knows what they’re doing!  I want to make sure I get appropriate services for my son, and I want some consistency between the so-called professionals working with him, so I want you to reconsider the diagnosis.  All you did was read out of a book, why don’t you ask us some questions about what we deal with every day, and we’ll tell you!”

She reluctantly agreed.  We told her how he spins when he enters and leaves a room.  We told her about how he becomes extremely agitated if you refer to a motorcycle as a “chopper”, hounding you to retract it and say it’s a motorcycle, because he just can’t accept that something has more than one word.  We told her how he screams when the hair dryer or vacuum cleaner is running.

As though she was doing us a gigantic favor, she agreed to put him in the Asperger’s category.  Gosh, thanks lady, you made our day!

To be honest, I’m not sure what my son’s label should be.  Asperger’s, PDD, ADHD…it doesn’t really matter.  The important thing is that we’re finding ways to work with him and support him.

What amazes me in all this, is that no matter where we went for tests and evaluations, no one ever offered us assistance, as parents, dealing with this devastating news.  No information on parent support groups, grief support, nothing.  As parents of a special needs child, we are all the tireless researchers, therapists, appointment makers, service coordinators, and chauffers for our children.  We are also the walking wounded, the ones that brace themselves everyday for the bad report from school or childcare, the ones that live and die by every tiny success of our child, the ones with a huge hole right through the middle of us.

But we are warriors too.  And as I slowly make my way through the maze of services and groups, I find that parents of special needs children are quite special.  We are tireless and determined, we arm ourselves with vast amounts of knowledge, and never hesitate to go toe to toe with a doctor or school to advocate for our children.

So I’ve found that, along with all these labels that I never wanted, and all the extra work that none of us wants to have to do, I have found many positives along the way.  My patience has expanded to infinite proportions, my sense of humor is more vast than it was before, and I know, better than most parents, how significant and meaningful even the tiniest success can be.

For my son,  I hold onto those positives, because if I don’t, I would be of little use to him.  And after all, he is my greatest gift.