Contradictions

I may regret what I’m about to put in writing, but this past 4 weeks has been the most peaceful and pleasant we’ve had in the last 3 years.

In the last 3 years.  3 years.

For 3 years, Connor has been irritable and moody.  That’s a long time to walk on eggshells, friends.  A very long time.

For 3 years, Connor has been the boy prone to aggression.  Not random, out-of-the-blue aggression.  It’s always in response to a real or perceived injustice or slight.  A toy taken, a rule broken, an unkind word said…things that would be met with a push, or a hit.

3 years of bad reports.  3 years of punishments and consequences.  3 years of various therapies.  3 years of wondering if we were failed parents.

4 weeks ago we stopped one of the medications, against the doctor’s advice.  4 weeks ago the irritability subsided, the aggression stopped.

For 3 years, Connor was defined a certain way, put into a certain category.  Now he must be redefined, recategorized.

2 weeks ago, we went to a picnic at the park.  Connor saw a little girl on the swing.  He went up to her mother and asked to push her on the swing.

A strong breeze would have given her a harder push.

3 years later...

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Rocks and Hard Places

I prefer to not talk about medication, because it’s a polarizing topic.  Instead I’ve written a “story”, about a family with a boy that takes medication.

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Little Man was three, and he had so much energy that he had already been kicked out of two daycares.  Mommy and daddy were worried, and frazzled.  They knew something was different about him.  And they were trying to hold down jobs, which was becoming increasingly difficult when nobody could handle their child.  So they made an appointment with The Doctor.

The Doctor knew right away that Little Man had ADHD.  He was like Tigger the Tiger, always bouncing here and there, distracted by butterflies and ants and sunshine and air.  The Doctor started Little Man on a medicine to help him.  The medicine is a stimulant.  Mommy and Daddy were nervous, but wanted desperately to help Little Man.

They're bouncy, bouncy, bouncy, bouncy, fun, fun, fun, fun, fun!

For a while, Little Man did much better on the medication.  But after a while, it seemed less and less effective.  It was changed to an extended release version, designed to last 8-10 hours.

Because of Little Man’s metabolism, it lasted 3-4 hours.  The Doctor prescribed it twice a day, and soon Little Man was at the maximum dosage. 

Stimulants tend to affect a person’s sleep, and soon Little Man was up every night, waking up Mommy and Daddy at 2am, 3am, 4am.  When people are sleep deprived, it begins to take a toll on their health.  Mommy and Daddy were not doing well, and they talked to The Doctor about it.  He added a medication at nighttime, to help Little Man sleep.

For a while, things went well.  Everyone was sleeping again.  But time passed, and Little Man became more and more irritable.  Stimulants can have this effect.  The Doctor added a mood stabilizer medication, to counter the effects from the stimulant.  He also added a non-stimulant ADHD medication, because the stimulant was losing its effect.

Now Little Man is five-years-old and on four medications.  He was still very irritable, and was now having episodes of aggression.  Mommy and Daddy walked on eggshells around Little Man, and Mommy began to fear him because he is a very strong child.  Mommy began to worry that Little Man would have to be hospitalized.  Things were very dark.

Then Friday night, as Mommy sat crying again, she decided that the medications would stop the next day.  They would have a medication free weekend.

Mommy was very relieved to see that Little Man was back to his bouncy, happy self.  There was no irritability and no aggression.  Even when he was sent for timeout for not listening, he did not yell or slam doors.  There was a lot of laughter over the weekend, and Little Man was very, very affectionate.  Mommy was so happy to see that her child was not out-of-control, and she stopped thinking about hospitals.

Little Man slept well all weekend.  He even agreed to read some words for Mommy, which he does not like to do.  It took twice as long to get anything done, but they were all much happier.

But they did worry about school.  Little Man was as distracted as ever.  Mommy and Daddy stayed up late, talking about medication.  They decided to give him ONLY the non-stimulant medication on Monday, and hope for the best.  They would consult with The Doctor (who they were starting to lose faith in), and see how things went at school.

Mommy and Daddy knew the school would not be happy, but they didn’t care.  They had been travelling this dark and lonely road all by themselves, with no help.  The school was not there to help them when Little Man was breaking things and screaming.  Even their family and friends did not understand. 

They were just glad to have their happy, bouncy child back.  And maybe the rest would just fall into place, and they would find a happy ending.

Just Breathe…

Connor and his big stick.

 

The first week of school took more of a toll on all of us than I would have guessed.  With Connor attending pre-K and childcare in the past, I guess I wasn’t expecting this to be a difficult transition.  I don’t know what I was thinking…my child has ADHD and Asperger’s, and almost all transitions are challenging.  This past weekend gave us some good downtime, and I decided to find a fun activity for all of us. 

No, Texas is not my favorite place in the whole world, but Austin does have some pretty areas, and a plethora of creeks and lakes.  Since Connor has never been to the ocean, or a natural body of water, I thought some creek exploration was just the thing.  A few minutes on google, and we were soon on our way to Bull Creek. 

During the drive, we discussed logistics:  what is a creek, how deep is a creek, how far away is the creek, are there sharks in the creek, etc, etc.  As we wound around the road, Connor grew more and more excited, asking “Are we to the creek now?” 

I could not have ordered up a more relaxing and fun adventure for our little family.  We parked the car and got out, and I explained that we had to hold hands near the cars and road, but I would let go once we got over to the creek.  He followed my directions beautifully. 

The three of us waded around, watched small fish scurry by, and enjoyed the scenery.  My boy found rocks to throw in the water, and a huge walking stick.  We explored and looked and laughed.  We even hiked up a small trail for a while and back down.  There were no behavior problems, issues, challenges, nada. 

This was my boy.  My sweet boy that loves to roam around and toss rocks and make noise and ask a million questions about all that he sees.  Maybe someday he will be a park ranger or a trail guide.  My boy just doesn’t do as well with being inside the box of a classroom, with rules and assignments, and competing voices and hands.  He’s like a fish out of water. 

I feel recharged after this family time.  We all piled into the car with our wet shoes and feet and headed home for dinner.  We even brought the big walking stick, so Connor could keep it.  My fear and dread has receded a little, and I think we’re all going to make it.

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 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??