He Knows

It's 4:30 in the morning. And I am not asleep. I've been awake since 2:30 just laying in bed. This is not good. I need to sleep. I cannot be an effective mama without adequate rest. Not to mention that I may never get over this viral crud that is now in week number three. Regardless, my body is wide awake, my brain won't stop. Perhaps writing will help clear my head.

It's been a tough transition into fall. There is nothing new about this, we go through this every year. But often times, in the midst of the hard, there is awesomeness. A little beacon of light. This year it came at The Boy's IEP meeting.

For the first time this year, we had The Boy attend his IEP meeting. This is something I've been thinking about for the past couple of years. These meetings are for and about him. What he needs, how we can all help him become the best possible version of himself. Who better to tell us than him? 

So I approached his teacher (MB) with the idea. And she was completely on board. We devised a plan that we thought would work. 

The Boy is not capable of attending a 1-2 hour long meeting hammering out the nitty gritty of his goals for the year, how they will be measured, how they will be reported, what accommodations and supports will be in place for each one, how much speech therapy, occupational therapy, social skills training he receives each week, when he will be in his GenEd vs SpEd classes etc, etc, etc. But we did want to introduce him to the process, let him know that this entire team of people (10 in all) are here for him. To help him and encourage him and work with him to optimize his growth and development.

But, more importantly, we wanted him to learn that his input was valuable and that we wanted to hear it. These are the seeds of self advocacy. 

So we decided that he would attend the first part of the meeting. He would listen as we went around the table, each of us talking about the strengths we see in him, what we enjoy most about him. And then we would begin by asking him what are his 3 favorite things at school, what is he good at. Then asking what is hard for him. The plan was for him to be in the meeting for about 15 minutes.

I wasn't sure how this would go. Meetings are not really his thing. And with his language skills...well sometimes he answers a question and sometimes he doesn't. Sometimes his answer has nothing to do with the question. Language is a huge challenge for him. 

The night before the meeting we told him about it and that MB would ask him these questions. We didn't get much of a response about the questions, he just kept talking about going to a meeting. I had no idea what to expect the next afternoon.

At 3:30 the next day we sat around a kid size table in kid size chairs, introduced ourselves to the new comers, and talked about his strengths; there are many. He appeared to not be listening, but I know better. Then MB asked him what was easy for him at school, what were his 3 favorite things. 

He immediately answered "PE!" 

Pause. 

"And recess." 

Much longer pause while thankfully everyone waited silently. 

"And um, um ... and um ... LUNCH!"

And everyone chuckled just a little. Because yes, these ARE the areas where he does not struggle, or struggles the least. And, what 9 year old boy doesn't love lunch and recess? We were perhaps looking for more academic answers, but his answers were very true to him. And on topic.

MB then asked him what was difficult for him, what was hard for him to do. I'll be honest, I wasn't sure we were going to get an answer here. And if we did, I thought for sure it would be writing, or worksheets, or the generic "school work." Because even though he is making progress in these areas, it IS difficult and arduous for him. He tells me over and over when we do homework that he can't do it, it's too hard. This is what I expected.

But here is what he said: "real-a-loud and closing". 

Read-a-loud 

Closing

Activities where he is not actively working, but where he has to sit still and quiet, listening. And he didn't just say read-a-loud and closing. He also said "I'm not good at it".

Wow. Just, wow. I mean...wow!

That one answer told me that he is so much more self aware than any of us have given him credit for. 

That boy is what my mom would call a "wiggle worm." (Is that really a term or just my mom?) I don't know if it's due to the ADHD or the autism or just being a boy, but he is constant motion.  And he talks incessantly. The only time he is still and quiet at home is when he is asleep. That is it. Even laying in bed trying to go to sleep he is moving all over the bed and talking to himself. Out loud. When he watches a movie he is acting it out at the same time. He is incapable of being still and quiet.

Read-a-loud and closing. I'm not good at it.

He knows. He knows where his strengths and weaknesses are. He may not be able to articulate I can't sit still and quiet, it's impossible for me. But he can say he's not good at read-a-loud and closing. He's telling us the same thing the only way he can.

As an outsider watching this boy run and jump and tumble through his days, it would appear that he is unaware of almost everything. But I know better. I see it in his eyes. That boy misses nothing. He sees everything and he hears everything. It is all going into that amazing brain of his. And it is all being stored there. And when the time is right, it will come out. 

Read-a-loud and closing. I'm not good at it.

Had anyone ever asked him before what was hardest about school? He's now telling us it's having to sit still and quiet. It not only makes read-a-loud and closing hard, but also schoolwork. When he can't move and be big, when it takes all his energy and mental capacity to sit still in a chair, there is not much left over to concentrate on reading or worksheets. His answer says so much more than just read-a-loud and closing.

He knows. He is telling us. We need to make sure we are listening.

English Language Learners

Where I work we have several employees for whom English is a second language. I don't interact with them directly very often, only about HR issues. But when I do, I'm always struck by how their use of English is so similar to The Boy's. Or maybe I should say The Boy's use of language is similar to theirs; almost as if English is a second language for him.

Last weekend The Boy was outside riding his bike. I'll say that again, he was riding his bike. Still so amazing to me. Anyway, I went outside to check on him and saw blood running down his leg. It looked like he had fallen off the bike and scraped up his leg. Without a word or any tears, typical. And worrisome, but that is a topic for another post.

When I asked him if he got hurt his reply was "Yes. My leg is not feel good." He didn't say my leg hurts, or my leg is bleeding, or even my leg doesn't feel good. He said "My leg is not feel good." Not exactly how any of us would say that. His point was clear enough, anyone would understand his message. It's just different, and a little awkward. And is usually one of the first signs to strangers that he is unique. Perhaps I should just tell them that he is an English Language Learner.

Now, if I could just figure out what his native tongue is...

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Sing a Little Song

Bambam has started singing. This is a new skill for him. It started within the past year with the Happy Birthday song. Which makes total sense because birthdays are one of his most favorite things. Doesn't matter whose it is, he just loves candles and cake and presents...and now singing Happy Birthday. Which he sings to someone (be it alive or stuffed, human or animal) at least once a day. It is awesome.

Within the past couple of months, his song repertoire has been expanding. He first added Old MacDonald and Baba Black sheep (yes, its a clear animal theme). But most recently he's added Frosty the Snowman and Santa Clause is Coming to Town. His versions are not exact replicas of the original, but they are certainly close enough for anyone to understand what he is singing. Seriously love it!

The only little issue with all this singing is that he wants me to sing with him. I. Can. Not. Sing. As in, I sound like a sick cow. Lets just say that my talents lie elsewhere. Don't get me wrong, I love to sing. When in the car alone I sing at the top of my lungs along with the radio. And I have a great time doing it. But any singing in public ended for me in Junior High School. (I know I'm dating myself, they call it middle school now.) I remember it clearly. The first time we were required to "try out" for choir. I didn't make it. Yes, lots of teenage girl drama followed. But eventually I came to grips with the fact that my singing was limited to in the shower or in the car alone. 

And then along came Bambam. My boy who had no words until he was over 3. Who works so hard on any and all verbal communication. Who I thought would never sing a single song. (Yes, I've learned my lesson about the word "never". Over and over and over again.) And when that sweet, angelic face looks at me and says "wanna sing too?" Well, there is nothing else to do but sing right along with him. No matter where we are. 

So, if you are in the grocery store, or at the park, or just walking down the street and you hear something that sounds a little like a dieing cow trying to sing Frosty the Snowman, well, that's probably me. Just one blessed mama enjoying a festive song with her beautiful boy. 

Hugs and Loves

For years, Bambam has greeted me first thing in the morning by asking for a hug. I'm not sure when this started, it must have been somewhere around 3 years of age when he began using words. Every morning He comes downstairs with arms stretched out saying "hug". Bambam is a sensory seeker. Deep pressure calms him. I think this is his way of grounding himself before the onslaught of the day starts. And of course I comply. Because what mom doesn't want to start the day with a big squeeze. It is awesome.

For the past 4 years, everytime I get my morning squeeze, I say "I love you". And for years it was answered by complete silence. And then, as words came for him, he would respond with "I like you". But he never said the word love. I often wondered why. I'm sure he could pronounce it, he says much harder words. My (probably flawed) reasoning is because he didn't understand the abstract meaning and how to apply it. The word like is used much more frequently in our everyday language. I like toys, I like playing, I like brother, etc. But love is not used as often. So it is harder for him to learn how to use it.

And then one day a couple of weeks ago when I said "I love you" during our morning squeeze, he looked at me and said, "I love planes". Progress! I was so excited as I also recognized that every autism parent needs to have thick skin and not be offended easily. I mean really, who wants to hear "I love planes" in response to telling them "I love you"? Well, I do as it means progress. He does love planes, he was learning how to use the word love.

This morning during our morning squeeze, I must have been a little distracted as my "I love you" was delayed. And I was rewarded by my little man saying "I love you". And I cried.

My 7 year old son said "I love you" for the first time ever today. 

Best. Day. Ever.

Pickles, Pears, and Pretzels

Bambam struggles with language. For him it is not intuitive, it simply does not come naturally. He had no real words until age 3, sentences until age 5. He works so hard for the words and conversation he does have, but sometimes it just doesn't come out quite right. The other day I bought pretzel snacks in the shapes of the Disney "Planes" characters. Major score as airplanes are one of Bambam's obsessions. On the drive home from the fun house yesterday, this conversation took place:

Bambam: I want pickles.
Me: Pickels? I don't have pickles.
Bambam: I want pears.
Me: OK, here are your pears.
Bambam: I don't want pears.
Me: OK.
Bambam: I want pickles.
Me: I don't have pickles, I have pears.
Bambam: I DON'T WANT PEARS! (pause) I want...I want the "Dusty" snacks.
(Dusty is the lead character in the Disney "Planes" movie)
Me: Great job finding a way to tell me what you want! Do you remember what they are called? They are not pickles, they are ...
Bambam: (long pause) Pretzels!

Its a very fine line between helping him slow down and find the right word and watching him become a frustrated puddle of little boy. Sometimes we fall on the good side of that line. Yesterday was a good day.