On Independence

Blink's ninth birthday was yesterday. As part of our celebrations, we went to a suburban pool for the afternoon. Actually water park would be a better descriptor. This place was off the charts. The highlight for Blink was the 4-story tall water slides. The boy whom we've been struggling to get up off the couch for months climbed four flights of stairs dozens of times. It was wonderful.

What was not wonderful (for me) was having to make snap decisions on how much independence to let Blink have. Clearly, other kids his age were navigating the park independently. Blink had the drive and the confidence to do so as well. Luckily, I was there with a friend and I was able to ask her what she thought about the situation. She encouraged me to let him have some freedom.

So I did. He asked if he could walk around by himself during a pool break while his sister and her buddies played in the sand area. I said yes but told him he needed to come find me and ask me before he got back into the water. I told him it was a test to see if he was responsible enough.  He followed through!  So I let him go.

Blink's not a daredevil (though he sure did enjoy the rush of the slides!) so I wasn't worried about his physical safety. The pool is not deep and there are lifeguards (attentive ones, even) everywhere. Instead, I was worried about a dispute or an altercation with another child. Luckily, that didn't happen.  I'm still on the fence about whether it was a good idea. I'd hate for him to get in a fight with a three-year-old, you know?  I guess we'll have some preemptive talks about the responsibility that goes along with independence.

But spectrum parents, how do you know when to let go?  Is it even possible to be a helicopter parent when you have a child who is quite delayed socially/emotionally?

Blink frequently goes to the lake with his wonderful PCA and she confirmed something I have often thought: water tends to regulate him. I'm so excited about having another outlet for everyone to have fun and get some exercise. We got a season pass thanks to my mother's generosity, so I intend to go often!

P.S.  When I asked Blink in passing if he wanted to do the next session of swim lessons, his answer was an unequivocal YES.

On Swimming and Growth

Blink started swimming lessons a few weeks ago. Upon the advice of some trusted experts in the field, I decided to hold my breath and start him out in regular lessons at the YWCA where his sister takes hers and loves them. The teachers are great, the classes are small (3-4 kids apiece), and when I asked them if they'd worked with Aspie kids before they didn't sound scared. So the idea was to see if it worked before moving to something more private/autism-oriented.

The first lesson, Blink started out well but then stormed out of the pool and said the teacher wasn't teaching him right

His father had taken him, so I didn't have firsthand observations to go on, but I think he felt anxious and self-conscious about being bigger than the others and maybe making mistakes. He'd rather not do something at all than to try and make a mistake. Sometimes this is hard to see because he's so busy being angry and dramatic about it.

To say I was a bit worried about the second lesson would be an understatement.  I decided to make a comic strip with a superhero that taught Alex "how to act at swim lessons."  We read it a few times and I held my breath as he went off to the second swim lesson and I went off to an autism workshop.

At the workshop, I listened to two parents describe how their older sons on the spectrum are on the swim teams. How swimming has become a fantastic sport for them. How it's given the confidence and mentors as they enter the teen years. It was inspiring and a very timely reminder to stick with the swimming.  Imagine if they'd given up after a first lesson!

Later, I learned Blink did a great job following directions at his second lesson.  Whew!  I hope we can keep it going.

A New Specialist to Visit, Oh Boy!

I must offer my apologies for the dearth of posts lately. It's continued to be a challenging time for Blink and a time of major, multiple transitions for the entire family (more on these to come in future posts) and that's sapping my usual posting energy. 

I took Blink to the pediatrician this week, because it's become increasingly clear that he's walking funny.  Or to be more specific, toeing in.  Blink says it "feels good" to walk this way.  Hmm.  He never used to do this!  Is it related somehow to his lack of stamina, I wonder?  Of course I first realized something was going on about a week after our OT fired us, so I didn't have someone to casually run it by.  So, what the heck, to the pediatrician's we went, where Blink was charming (whew) and slightly manic in his conversations about pets.  And where we received a referral to an Orthopedist and the intimation that he'll probably need some physical therapy.

So, in a month we will see what's going on. I'm not terribly worried, but I am weary at the thought of adding another specialist to our roster. 

Tough Weekend

I guess the good news about this weekend is that I survived it. Mostly.

Sometimes I can roll with the challenging behavior. And sometimes I can't. Sometimes the emotional armor  wears thin and it gets inside me.  And once that happens, it's so hard to recover.  Once we both end up in tears, the floodgates are open wide.

I am burnt out.

And somehow I have to put the pieces together and figure out how to better handle him.

The Grief We Carry Arround

This weekend, my partner and I were having lunch and we were chatting about a set of adorable twin boys he knows who are on the spectrum but receiving a great deal of early intervention. He predicted that these boys will be able to go off to kindergarten in two years and nobody would ever guess they have autism.

My eyes instantly flooded with tears.

I didn't even have time to think about it; the grief just washed over me.

That's not my son. Why can't that be Blink? Why us? Will everything always be difficult because we didn't figure everything out earlier? And of course... Why didn't I get him help earlier? If only...

The amazing thing for me was that when I looked at my partner, I saw the same grief on his face, as well. The grief may still well up unexpectedly and fiercely (will that ever stop?), but at least I'm no longer alone on this journey.

Oh Yes, That Sounds Like My Son...

Yesterday, Blink's school had a special assembly to celebrate the school staff, culminating in an "open mic"  for students to take the stage and thank special teachers and staff. I'm told Blink took to the stage and spent about two minutes giving a very thoughtful and sweet thank you to the aide who has worked most closely with him over the past three years. He told me he was nervous standing in front of so many people but that he felt happy to be saying nice things about Ms. C.

He apparently said that Ms. C gave him his first ever Lego set (this is a very big deal as it is his current obsession) back in kindergarten and that she has been "sweet" and helped him a lot ever since.  Sniff. I wish I could have seen it.

But this uber-sweet side of Blink is only part of the story, of course.

Assemblies are loud and overwhelming and that's often bad news for Blink. Apparently, by the end of it Blink had some sort of meltdown and threw a sock(!?) at the school's principal.  Oops.

But yeah, that sounds like my son.

Reaching Milestones I Didn't Know Existed...

The epic battle with Blink's school over the bullying (which I've been reluctant to discuss in detail here) finally reached some resolution yesterday morning. Hallelujah.

After first denying, dismissing, and don't-let-the-door-hit-you-on-the-way-outing, his school's director took a different approach in our meeting and set forth some key policy changes that would ensure no students will be vulnerable to harassment when they use the bathroom as well as some specific adjustments to Blink's daily schedule and supervision to ensure the most vigilant monitoring of interactions between Blink and the bully.

Funny how everything changes when you show up with a legal advocate from your state's Disability Law Center...

While Blink is still showing signs of stress and anxiety, he is starting to moderate and behavior at school is starting to improve as well, so I'm hopeful we may have turned a corner here.  And summer is rapidly approaching anyhow.

So. Another milestone in parenting a child with special needs has been reached -- successfully working with an advocate.