Wordless Wednesday, Now With Words and Punctuation Marks!

Wordless Wednesday is this meme where you post a picture of something or someone, that tells a story without words.

I’m not really good with rules.  You know this.

A couple of weeks ago, we went to the Fall Festival at the big YMCA a few miles from home (because we like to spend ass-tons of money like that).  It’s the Super Target of YMCA’s, because it has a lake, cabins, volleyball courts, and several acres.  They also have a 40-foot climbing tower, and when we arrived, that was the first thing we saw.  Connor was super excited about climbing it.

That's my kid, kicking that tower's ass!!!

What’s amazing about this, is that there was a live rock band performing on stage, about a hundred yards away.  Talk about sensory overload!

He climbed and he climbed, and I cheered and I cheered.  At almost the very top, he got scared and called down that he couldn’t do it.

“YES YOU CAN!!!!  YOU’RE ALMOST THERE, YOU’RE AWWWWWESOME, YOU CAN DO IT!!!!”

Every molecule of my being was focused on him, urging him to the top, straining to push him up the last steps with the sheer force of my thoughts.  I was sure I was going to stroke out.

He let go briefly and dangled, but then caught hold of the rope ladder in the middle, and finished the climb.  Standing on the platform at the top, he called down, “I can see EVERYTHING from up here!”

And Oh. My. Gawd. did I cry like a baby. I was so goddamn proud, I thought I would bust open like a pinata.

It wasn’t just the tower.

It was the four months of daily desensitization it took to transition him from a bottle to a sippy cup.  It was working slowly up to table food at the age of two.  It was occupational therapy, and ABA therapy, and finally being potty trained at the age of four, and floor time therapy, and medication changes, and aggression management and social skills therapy.

It was a metaphor for every fucking mountain we’ve climbed, or, more appropriately, that I’ve had to drag him up kicking and screaming.

And it was hope for every other mountain that we still have to climb.  Because we don’t always have a lot of that, do we?  When we’re up to our elbows in shit, and we haven’t slept a full night in longer than we can remember, and we work ten times as hard for half the payoff, and we think “I don’t know how I’m ever going to get through this, it’s just too much.”

It was a good day; a day I will pull off the shelf and dust off, from time to time, when the going gets tough and the mountain too steep.

He needed this.

I needed this.

And I needed a vodkatini, after the $87 we spent on this outing.

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Holiday Stress, YMCA and Pflugerville ISD

With Connor in kindergarten this year, it was our first time seeing the effects of school combined with holiday stress.  The last week and a half before the holiday break was a real challenge.  We saw our normally happy child exhibit a big spike in aggression and anxiety. 

A couple of incidents at school involving hitting, and I was emailing the teacher, special ed teacher, district autism specialist, and our behaviorist.  Simple common sense tells me that when a child is anxious, and exhibiting a loss of control as a result, then they need some extra supports to help them with coping strategies.  Initially, the teachers did not agree, and chalked it up to holiday angst, recommended that any changes right now would not be a good idea, and informed me they would monitor after the holidays.

Huh?  I don’t think so.

Our behaviorist, on the other hand, completely agreed, and sent a list of interventions to try until the holiday break.  They were simple tools, aimed at helping Connor get out extra energy, and providing a little more structure at recess time, when he was having challenges. 

In an amazing about-face, the teachers and autism specialist “agreed”, and the rest of the week went by without further incident.  In my ongoing commitment to being diplomatic, I humbly thanked them for their enthusiasm at helping Connor through the rest of the week.  It was great that they saw the value of our behaviorist’s recommendations, and I can only hope that in the future they also see the value of parents recommendations, namely, mine.  I’m told by others that my experience is an unfortunately common one.  On a positive note, we have all established my reluctance to be dismissed, and my commitment to a team approach.  Yay team!!!!

And then there’s the YMCA…..

Of course the challenges carried over there as well.  I asked every day if they were using the “happy face” chart and prize box.  Ummmm, no.  Alrighty then, I’m afraid I cannot address your concerns unless you are using the abundant tools that I have provided. 

Next day, better.  They used the chart.  “So you used the tools, and the behavior was better?  So I guess you guys have a handle on things now, and I won’t need to provide any more reminders about using the tools, right?”

It ain’t easy being an advocate.  The hardest part is living in a state that is so very far behind in services for the disabled population.  There are not adequate programs, people have had very little training, it’s still like a foreign concept here.  So I provide tools, I advocate, I teach, and I remind.  I remind them constantly that my son is not going away.  And worse, I am not going away.  Not following through is not an option, because I will be there again and again, asking questions and holding people accountable.  Good grief, these children are your neighbors, your friends, your relatives.  You will not pretend they don’t exist, and you will not just dismiss them when they don’t fit inside your box.

And now we are in the middle of holiday break, and it is going so nicely.  My child is happy, bubbly, and pleasant.  He spent 45 minutes at the McDonald’s playscape, making friends, playing nicely, having good manners, and being a pure joy.  That’s the best Christmas gift I could have received.

Milestones

After all the changes, and the meeting, and changing my work times, things have been sailing along much more smoothly at Connor’s after school program.  He has a new counselor that worked with him at their summer camp, and she is really great with him.  The past two weeks have been rather pleasant (I’m almost sorry I just put that in writing).

On Friday when I picked up Connor, his counselor asked me if I would always be picking him up that early.  She said she’d like him to stay later, since he’s been doing so well.  She’d like to see how he does when he’s there for more than an hour.  WHAT??!!  That is a first!  Never in his five years has someone asked for him to stay longer.  I was just so flabbergasted, I didn’t know what to say.  Then I remembered that they have an early release day coming up this week, and a teacher day off in October.

I reminded her of those, and we decided to see how things go on those days.  Let’s not get all crazy and start thinking he can just hang out for hours on end, being good, for heaven’s sake!

Things have also gone well in his kindergarten class, with only two days of naughty reports.  Two days out of four weeks is not too shabby.  I’ll take it!

I can honestly say, my heart swells with pride.  Maybe he is finally maturing and understanding how to conduct himself.  He even went to his counselor to ask for help with a conflict, rather than hitting or pushing.  He got a trip to the treasure box for that.

Here’s crossing my fingers and hoping things continue this way.  All our hard work is paying off, painfully slowly, but still getting there.

Creating Success

Last week I took time off work for the meeting with the after school staff to discuss behavior supports.  Connor has been attending a social skills playgroup weekly, and his group behaviorist agreed to attend the meeting to pass on her wealth of knowledge on behavior supports.

The meeting went fairly well, and we discussed a number of ways to help Connor succeed in the after school setting:

1. Using first/then language; first you must wash your hands, then you can have snack.
2. Giving him a picture schedule to remind him of each different activity (snack, restroom, gym time, outdoor time).  He can earn a “ticket” for each session where he has good behavior.  He can turn in his tickets for a prize from the treasure box (provided by me) at the end of his day.
3. Giving him a job, such as line leader.  Being in charge gives him a boost.
4. Making sure his staff person spends a few minutes pairing (bonding) with him.  He needs to know he has a connection with you.
5. Using language to help Connor understand how his behavior affects others; “When you don’t listen and you walk away from me, it hurts my feelings and makes me feel really bad.”
6. His special ed teacher will help each day with the transition from class to after school time.
7. I will be changing my hours at work to 7:00 a.m. to 3:30 p.m.  By the time I pick up, he will only have been there an hour, and less time equals less behavior.  Daddy will have to take him to school each morning.

 

The autism coordinator for the Pflugerville school district is also involved, and has been helpful.  So far, it has been an encouraging school year, and I hope that things continue on this track.  They seem to be hearing me when I say that failure is not an option.  And it’s not.  If my son fails, that means that we all, collectively, failed him.  With parent/school/teacher/behaviorist support, there is no acceptable reason for Connor to not succeed.  Excuses will not be tolerated. 

Last week went a bit better.  This will be the first week with me on the new schedule, which I absolutely despise, but will do it because it’s for my son.  Now we need to start thinking about what to do during the two-week winter break, and other various school “off” days.  I’ve had to take so much time for his various appointments, and suspension days from summer camp, that I don’t have many days left to take off.  I’m hoping the autism coordinator can help us come up with some solutions.

And despite my reluctance, I attended the first PTO (formerly PTA) meeting, and volunteered for three activities.  I figure I better start networking my butt off, and making nice with other parents.  This is where resources come from, and we sure do need some resources.

It’s going to be a busy, busy year.

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.