Progress

We’ve had quite a busy week with Little bear. Both Papi bear and I have been working as hard as we can to get him on track developmentally. We read, we play pretend, we roughhouse with both our boys – whatever it takes to get Little bear engaged.

And it’s working! It’s working incredibly well.

This week he started saying a bunch of new words regularly: No, papi, “Gracias, Little Bear (except his real name),” uva, meow, the letters i, t, d, and z(eta). He’s using old words like bubble and ball more often. He repeats new words more often, even if he hasn’t incorporated them into his vocabulary yet. We see him on the cusp of learning and we’re thrilled by it.

He’s also growing socially. He’s starting to seek approval every once in a while. Not consistently yet, but sometimes when he’s watching TV, he’ll look up to see if you’re watching, too. He especially does this when it’s something he’s really enjoying. He’s done it a few times when playing with puzzles as well. He’s searching for approval and for us, that’s huge.

He’s starting to fight with his brother. Previously he just cried when Big bear bothered him. Now he defends himself by pinching, biting, or pushing back. He’s not doing it unprovoked – he’s learned that his brother feels pain, too, and it makes him stop hurting him.

Finally, Little Bear has found a new love. Kung Fu Panda. We rented the third installment last night and Little Bear was mesmerized. He’s always been a movie fan, but this was Screen Shot 2016-08-07 at 9.49.06 PM.pngdifferent. This was like his entire spirit lifted. He laughed, smiled, growled, and actively watched the entire film from the beginning until the end of the credits, and then went up to the TV and touched it when it ended because he missed it.

Ironically, it wasn’t the panda he liked. I mean the panda was cool and he laughed when he did funny things, but the villain… that was who he adored. He literally squealed with joy every time he came on screen. The action scenes had him literally at the edge of the couch in suspense. He enjoyed the third one so much that we finally watched the first one, which has been sitting on my Amazon Prime account for at least six months – there was a giveaway when Kung Fu Panda 3 came out and I downloaded it “just in case.”

I’m glad I downloaded it.

He loved it. The leopard? Oh god. He sat there growling at him every time he fought the panda. Growling and laughing. He was in heaven.

I think we have a lot of Kung Fu Panda in our future.

Reaching Targets

Today we went to Target with Grandma. You were crying and whining when I sat you in the cart. I thought you had anxiety. I put you on the ground and it turned out you just wanted to walk like your brother.

You were so good! You never went more than one aisle away. You ran down to the end, hid at the endcap and then looked around, laughing and giggling because mommy was far away. I said, “Little! Bye bye!” and you responded, “Bah-bah!” and blew me kisses. I started walking away and pitter patter pitter patter… you were chasing after me.

You and your brother wanted a ball. They were on clearance for $1.48. Grandma bought each of you one. You wanted a blue “bubble” just like your brother had. No way could mommy get you the white one instead. You wanted to be like your big brother – he’s your favorite person ever. Both of you ran ahead of us, chasing your oversized balls, laughing all the way to the checkout.

You made me feel much better about the day.

You were playing, you were using words, you were interacting with all of us, and you were responding to simple commands.

I’m very proud of you, Little Bear.

Testing 1…2…3

Today was our first appointment with the geneticist. She started throwing out all these Screen Shot 2016-08-02 at 11.26.56 AMsymptoms and possibilities, and we just answered questions about our family history as best we could.

History of seizures? No. In the family? No. What did your father die of? Heart disease. And your father in law? Pneumonia. Do you know of any person in your family with a learning disability? No, not that I’m aware of.

Lots of questions. No answers.

A form to take to the lab later today. Results will be back in three months.

Will we find out anything before then?

If something comes up on the exam, you’ll be called in earlier.

I hope the phone rings the day before to confirm the appointment. This is a doctor I wouldn’t mind getting no answers from.

Music

I suffered from depression as a pre-teen and teenager and my only way of breaking through was musicals. I was completely absorbed by them. Sondheim was life. Jerry Herman was happiness. I made a sort of soundtrack to my life using songs from shows. Every single important moment that has happened to me has a matching song – no lie. I even had a breakup song broken up for the inevitable end of my relationship with my now-husband. Luckily, I never needed it.

Not to diminish the pain of parents who have lost a child, but this is the song that has resonated most with me as we’ve dealt with Little’s diagnosis. My husband and I haven’t talked about the diagnosis with many people. He just told his mother for the first time today and she hung up on him and cried for a half hour before calling him back. We’ve been very private about our pain. My only outlets have been this blog and two friends that I’m in a group chat with on Facebook. I have no energy to discuss it daily with my real-life friends or even my family beyond my mother and sister. So I keep to myself. I take walks. I cry silently. I cry out loud. And I hold my boys as though they were slipping from my grasp.

There are moments that the words don’t reach.

There is suffering too terrible to name.

You hold your child as tight as you can

And push away the unimaginable

….

I spend hours in the garden

I was alone to the store

And it’s quiet uptown.

I never liked the quiet before.

I take the children to church on Sunday. A sign of the cross at the door.

And I pray

That never used to happen before.

 

If you see him on the street, walking by himself, talking to himself, have pity…

He is working through the unimaginable.

 

There are moments that the words don’t reach.

There is a grace too powerful to name.

We push away what we can never understand.

We push away the unimaginable.

Guilt

I fought to carry Little bear to 42 weeks against my OB’s advice. My first son had been a planned c-section and I wanted Little bear to be “natural” and “come when he was ready.” Little bear was never ready. He was finally induced at 41 weeks, 6 days and was born 33 hours later. Ever since his diagnosis, I’ve wondered if my bad pregnancy decision affected his outcome.

The neurologist told me no, it doesn’t seem so. He told me if he was born pink and crying with no signs of oxygen deprivation, if I had regular BPPs, if he was a normal weight, and there was no mention of placental inefficiency, I did nothing to hurt my child. Yet, I wonder. I want to go back and be induced on my due date. I want to know if it would change this pain our family is going through.

My husband needed some time alone last night to think and read. He went onto the CDC’s website and austismspeaks.org to read more about the disorder. He came back to me an hour later and said, “I think I might be autistic. What I’m reading sounds so much like me.”

My husband has told me often that he can’t remember his childhood or any unpleasant event from his life. He said it’s not a normal, “I don’t want to remember,” situation: He literally cannot recall his past and it caused him a lot of pain when his father passed away four years ago.

He has the ability to block out the world when he concentrates on something. He can easily go twelve, sixteen hours by himself working on a project without coming out to eat or drink. He is passionate, dedicated, and impossible to stop when he has something in his mind.

He has never been popular. He has “friends,” but he really wouldn’t be very bothered if he never saw any of them again. I was his first and only serious relationship. He’s the type of person who walks in a room and automatically assigns “roles” to people rather than deciding if he likes people or not. People are there for reasons, rather than relationships in his mind.

I told my husband, “If being autistic means that our little boy can be exactly like you, then I’m thrilled at the prospect.” Because there is nobody I love and admire more than my husband.

Acceptance

My husband and I didn’t really talk about Little bear when he arrived home from his trip on Friday late afternoon. I was excited because of the progress I’d seen from working so hard with him. He was answering to his name one in five times (twice as often as before), he was pointing to a few different items in books, and he was making eye contact a little more often. The world seemed rosy on Friday night.

Then today happened.

Little bear was cranky the entire day. He woke up early, went to nap late, and we had to wake him up around 5:30 so he wouldn’t sleep into the night. He didn’t want to be apart from mama, but neither did his brother and it was just a non-stop day of fighting and arguing between them.

We finally got them to bed around 8 and my husband and I sat down in the bedroom and pulled out our external hard-drive. Big bear had been speech delayed, so we wanted to see where he was a few weeks before his second birthday. He’s close to normal now – he has a few quirks, but nothing hugely concerning.

We watched for about half an hour. Big bear was saying about 4 words with regularity at two, which is about on par with Little bear. There were differences, however, that cannot be ignored.

Big bear’s words were: mama, dada, gata, caca.

Little bear’s words are: ball, bye-bye, leche, all done, up, beh-beh (used when mama or dada leaves)

Big bear’s words were words that communicated with the living beings in his circle. Little bear’s are things he likes or things that get stuff done.

The other difference was saw was the communication with us. Big bear constantly looks back at the camera for approval. Little bear just does his own thing. He rarely searched for approval. This sealed the deal for my husband and I.

We hugged. We cried. We did what-ifs. We talked about scenarios. We talked about treatments. We blamed each other. We blamed ourselves. We blamed the world. We cried some more.

Then Little bear woke up. I just held him and cried for another ten or fifteen minutes. We tried reading with him and the problems were so obvious that we would have to be blind to ignore them.

Little bear is autistic.

He isn’t untreatable. He isn’t suffering in his surroundings. He’s just trapped in his mind more often than not. We’re just here knocking on the door, hoping he’ll answer, even if it’s just for a few precious moments.

We put him back to sleep. He wanted his mommy and papi to be with him. It breaks my heart that my son wants me to be with him all the time, but he can never come out completely to be with me.

It just isn’t fair. But then, no disease is fair and no parent should ever have to go through this type of pain with their child.

All I want is for my son to be independent and happy. That’s all. I hope, as a mother, I can give that to him.

A Good Day

Last night Big bear stayed in his bed until 6:30 in the morning. I let him come in with me at that point, as long as he didn’t wake up his brother. He didn’t sleep at all, but he cuddled and had some mommy time. Around 7:30, he said, “Mama, time get up!” and I begrudgingly obliged.

Big bear and I made his lunch together, read some books, and watched TV while Little bear continued to sleep. We had some one-on-one time, which has been very important this week. He’s missing his daddy a lot and he’s noticing mommy spending more time and giving more attention to his brother, so he’s starting to act out.

Screen Shot 2016-07-28 at 11.23.38 AMAs soon as Little bear woke up, he was a totally different child. Hitting, kicking, attacking his little brother and all Little bear wanted to do was drink his milk and watch Super Why.  I tried to sit Big bear on my lap and explain that Mama loves him and we’ll have lots of fun together. He said he wanted his father.

While I dressed Little bear, I narrated what I was doing. Put on pants. Ponte pantalon. Put on shirt. Ponte camisa. Put on shoes. Ponte zapato. A soft whisper “…papo…” I repeated “zapato?” A little bit louder, “Papo.” Little bear was trying to say “zapato.” This is a new word for him.

I broke up a few more fights started by Big bear and put them both in the car. At that moment, my phone rang. Daddy was calling on FaceTime. He talked to the boys for about 10 minutes and it made Big bear feel better. When I said it was time to say goodbye, he started crying uncontrollably and saying, “No Papi bye! No Papi bye! Quiero Papi! I wanna Papi!” So I called my husband back using whatsapp and he was able to sing him his ABCs all the way to school.

Little bear and I had some one-on-one time when we got back to the house. The minute we walked in the door, he did something he’s never done before: He reached in the direction of the kitchen and said, “awa….. aaa…. awa… awa.” He was asking for agua. I praised him profusely and gave him a choice between agua and leche. He chose leche, of course. He didn’t point to the drink he wanted, but he pointed to the room where it was located and for a child who, up until now, has never pointed, that’s a big deal.

We started with a picture book: Happy Baby Palabras. I used his finger to point to each photograph and I labeled in English and Spanish. He flipped ahead to his two favorite pages: toys and food. He tried to use my finger to point, but I corrected him and used his finger to point to his favorite toy: ball. Then he pointed to his favorite food: yogurt. Back and forth he went, studying each page and then pointing to his favorite, occasionally saying, “Baaa” (ball). I was very happy with the progress.

After reading the book a few times, we played bubbles as a reward. Little bear bounced and said, “bubba pop! bubba pop!” when they landed on his clothing.

We followed bubbles with some puzzles, shapes, and play-doh. At that point, he started to climb on my back and bite me, which is his signal that he’s hungry.

He seemed interested in what I was doing as I broke the eggs and beat them, so I pulled out the play food and gave him his own burger and pan. He started poking the burger like I was poking the eggs in the pan. After two or three minutes, he started biting the burger and smiling. I finished my task and took the food to the table, blowing on it to cool it off. I look down and I see Little bear blowing, too. He was imitating mama! He rarely does what I do, so every little bit gives me hope that we’ll be able to get to know our son at least a little one day.

He ate his eggs, followed it up with some apple sauce, and then we went to the bedroom to play tickle monster. He giggled and giggled. He always looks me in the eye when we play tickle monster, so I said, “Hola, Little bear! Hola!” And he repeated, “Hola! Hola! Hola!” over and over again.

He played in his toy car for a bit to calm himself down and he started asking for “leche,” so I made him some milk and put him down to sleep. He’s still awake, but he’s slowly calming down and getting ready for his afternoon nap.

Today has been a very good and very productive day.