The New Normal

The Boy has had a heck of a spring. And after the fall/winter we barely survived, this is sort of amazing. He's made so much progress in so many areas. He's reading. READING! And riding a bike. And writing his name. And sending "emails" home that he types telling us about his day at school. He's learning so many new skills. He's even been dry at night for the past 5 nights in a row. And that, my friends, is a true miracle.

That boy has never had a dry night in his life. We've spend a small fortune on night time Pull Ups. Not only have they been wet every single morning, but half the time he even pees through them and wets the bed. Laundry is a daily routine. It's hard to believe one small body can produce so much pee. 

We have tried everything. And I mean everything. No liquids after 7:00 pm. Then 6:00. Then severely limited them after 5:00 pm. We briefly discussed going to 4:00, but were afraid that might be considered child abuse. We made sure he emptied his bladder before bed. Then I started getting him up when I go to bed to empty his bladder one more time. I even got him up in the middle of the night to go yet again for a few nights. (that didn't last long, mama needs her sleep) Nothing helped. He ALWAYS got up soaking wet in the morning.

So imagine our surprise when 5 days ago he got up and was completely dry. The Pull Up was dry! We were shocked. And so excited. We made a big deal out of it and the The Boy actually seemed proud. This is an emotion he doesn't show very often, no matter how big his accomplishment. So clearly something was clicking here. We talked about it throughout the day and again when he went to bed. And in the morning he was dry again! 2 days in a row! 

Its now been 5 days and he's been dry every morning. As I texted my sister yesterday: Dare I say, could this possibly be our new normal? He even asked this morning about wearing "unnerwears in my bed". I'm not sure I'm ready for that step. Honestly, it frightens me a little. I know how much pee this kid generates and the thought of it flowing freely like a river ... I just don't want to go there. Yet. But clearly something has clicked with him. I don't believe 5 days in a row is a fluke. Especially 5 days in a row after 9 years of soaking wet every single night. 

I had started to wonder if night time enuresis was just a life time fact for us. I had honestly put this issue on the back burner, not giving it much thought anymore and just resigning myself to daily laundry and morning sponge baths. But once again, The Boy is teaching me that I should never count him out. And that its not up to me. When he's ready, he'll make his move; in his own time, in his own way. I just have to offer support and cheer from the sidelines. You go kid, you go!

Progress

We were again at the Fun House last weekend. It is our respite place. The place where we can breath deeply and feel the stress and tension leave our bodies, our minds, our family. A place where we can all just be.

So its natural that in this place we might occasionally stretch Bambam. Pull him out of his comfortable zone and work on situations that are uncomfortable for him. This weekend it was eating out at a restaurant. 

Eating out has not always been an issue for him. In fact, when he was younger (a preschooler) we used to eat out on occasion. We had a favorite pasta restaurant that we would visit maybe once every other month. Eating out has never been a frequent occurrence for us. But he liked the pasta restaurant and usually did very well there. Until the incident.

The last time we ate there, probably 2 or 3 years ago, they sat us back by the open kitchen. This was a new experience. Usually we sat up towards the front windows. As soon as we sat down I could see Bambam's anxiety rising. At that point, I should have asked to be moved. Hind sight is always 20/20. With lots of noise and activity in the kitchen, he was on edge. Then, as soon as we ordered, a flame shot up over the half wall with a loud searing noise. And it was all over. Instant meltdown. He was yelling and flailing and trying to claw his way inside my shirt. There was no calming him down without leaving. So I took him outside while Mr. Fixit changed our orders to go. We haven't been back since. In fact, every time we even drive by Bambam says loundly "No go to noodle restaurant!". Years later. And he has been unwilling to try any other restaurant. Until this past weekend.

We were in town running errands and decided to try lunch at a pub. It was time. We had the iPad, we figured they had wifi and Bambam could entertain himself. So with deep breaths, we ventured in. And wouldn't you know it, they sat us back by the open kitchen! As soon as the hostes left, Bambam looks at the kitchen and then looks at me with fear in his eyes and says "no sit here". Good job self advocating kiddo! So I went back up front, quietly explained that my son is autistic and the kitchen is causing him some anxiety, could we please move up to the front by the windows. They were more than accommodating. Once we sat at our new table, Bambam visibly relaxed. Unfortunately, there was no wifi. But he entertained himself coloring the kids menu and we talked about what he wanted to order for lunch.

Imagine my surprise when our server arrived at our table and asked what Bambam would like for lunch and he answered "pizza." He even answered all the followup questions: What kind, pepperoni; what would you like to drink, apple juice. Unprompted, my son answered questions for a stranger. On topic. With the correct answers. In a stressful environment. We were stunned.

It was a great experience. He didn't actually eat his lunch. At least not at the restaurant. He ate it later back at the fun house. And he did get up and go upstairs to the empty mezzanine several times. But he was not disruptive, he handled his anxiety well, and the rest of us were able to eat a nice lunch. 

Progress. That's what we call it. It may be small, baby steps. But it is still progress. Learning to navigate this big, assaulting world that wasn't made for him. And I revel in each and every one of the baby steps, no matter how small. I surround myself in them, swim in them, soak them in. I hang on to them, pull them out during the difficult times. Always, always reminding myself to NEVER count him out. It is all in his own time, in his own way.

If Only

It seems I've been living in a world of "if only's". Since Bambam was very young and we realized there was something "different" about him, "if only" has been a constant phrase in our house.


"If only Bambam could walk, things would be so much easier."

"If only Bambam could talk."

"If only Bambam could pee in the potty."

"If only Bambam could poo in the potty."

"If only Bambam could swim." 

"If only..."

"If only..."

"If only..."

And it seems, he has accomplished each and every one of the "if only's". In his own time, in his own way. But accomplished them just the same. And I've learned a lesson. Its not an "If " its a "when". I've learned NOT to assume my child cannot gain a new skill. I no long say "If Bambam can accomplish...." I now say "When Bambam accomplishes..." Because he will. Never count that kid out. His determination and grace (Not physical grace, he's the clumsiest kid we have. But inner grace and beauty) are amazing to watch. I have no idea where his path in life will lead him, but it is an amazing journey to watch. And I'm so thankful I have a front row seat.

The Report Card

We recently received Bambam's first report card. To be fair, we did receive progress reports in preschool and kindergarten. But this was his first "real" report card from first grade. And WOW. Talk about depressing. The entire report card was filled with "n/a's". And I mean the entire thing, no other marks at all, just "n/a". Even though I know exactly where my child is developmentally, this still makes me take a step back, sit down, and breath deeply so I won't cry. I've said it before and I'll say it again: seeing in black and white exactly what my child cannot do is one of the worst things about being a special needs parent for me. I really don't need to be reminded, I live it every day.

This report card seems worthless to me. I'm not sure why the school even bothers to send it home, other than I'm sure it's required by some stupid administrative rule. And I'm sure his teacher likes filling it out about as much as I like receiving it. Who wants to focus on what a child cannot do?

Apparently not Bambam's teacher. Because in addition to the report card, the envelope held a letter written by her. The first sentence said: "Bambam has made steady progress since the beginning of the year." And then she listed items that he CAN do or where he has made significant progress. These are not things measured on the report card of a typical first grader. They included items such as

• Greeting peers by name and making appropriate eye contact
• Having short, appropriate give and take conversations with peers
• Reaching conclusions after hearing spoken information; expressing his conclusions
• Using a quiet voice when interacting with peers and adults
• Accepting of "now" and "later", will concentrate on work now for a reward later
• Able to spend up to 30 minutes in the classroom and remain calm with normal activity/noise level of peers
• Participating in PE and Art with his class
• Beginning to do academic activities in the classroom with an aid, or with a peer but no adult supervision (HUGE!)

There were 16 of these items. And she ended with "I am expecting great things from Bambam. He is doing wonderfully". I'm not ashamed to admit that as I read this letter, I did cry. I was crying not just for the improvements we've seen in the past 4 months (awesomeness!), but for the people that surround my son at school. People who "get him". Who celebrate his small accomplishments as much as I do. Who clearly love him for who he is, where he is, and what he has to offer. For this I am grateful everyday. 

As for the report card, they can keep that. I'm keeping the letter.