School Assignment

Yesterday was D-Day. We received Little Bear’s school assignment. Papi Bear and I were nervous, almost as though this were a decision as to whether or not our baby was going to an Ivy League school. First, they reviewed his assessment. We agreed with everything stated. Then we both started thinking, “Oh wait. Did we make him sound too good? Maybe they won’t even consider him for school. Crap. We need to make him sound worse! He needs to be in full day preschool with an IEP!”

FullSizeRender 3Next came his medical history. Then came his speech history. Then came his physical therapy. It was almost an hour of going through who exactly Little Bear was and what exactly his deficits were.

Then came the moment where they explained the different programs.

“One of the programs your son tested for was the ASD program. Your son has a social smile, attempted to engage strangers, enjoys playing simple games, and has developing joint attention. He also has over 200 words. Because of his social and verbal abilities, your child does not fit the school board’s criteria of ASD. Keep in mind this is not a medical diagnosis and is simply the criteria of the school board. It will not affect any services your child is currently receiving.”

I could feel Papi Bear breathe a sigh of relief. This trip has been an even bumpier ride for him than it has been for me. He only sees Little Bear at night and on the weekends, when he’s least structured and most likely to act out. His culture is also not one that takes the bull by the horns when it comes to dealing with special needs. He hasn’t told many people about Little Bear outside of his immediate family. This gave him hope that his son was simply not that social – just like he was as a young child.

Now we were sweating again. Did he place at all? He must have. He must have placed somewhere. We thought he was at a lower level than his brother at his age. He was, wasn’t he?

“Little Bear has been assigned to the Intensive Full Day program at Big Boy Elementary School.”

That’s Big Bear’s school! Our boys were now in the same school! Thank goodness! We were terrified that we’d be facing two buses, two schools, two pickups, two sets of events, etc.

I had originally requested that Little Bear be in the same class with his brother, but his brother is in the larger class size, so it’s not possible. They’ll be right next door to each other, though, and they have recess and playground together. I’m okay with that.

And that’s where we are. Little Bear is going to full day preschool at the end of the month in a small class with other kids that have similar developmental levels. He was not deemed high enough need for a special needs school, which means his ABA, OT, PT, and SLP have brought him a long way from where he was in March.

More than once I’ve considered calling Fancy Preschool and telling them, “Guess what, Fancy Preschool director. The school board says my child does not need a special school and is perfectly capable of being in a regular classroom as long as there’s a smaller class size and he has a little more help.”

Little Bear celebrates his third birthday this weekend. We’re taking him to Disney to celebrate. He doesn’t really care much, but his brother has been talking about it non-stop. Fun times this weekend for the Bear family!

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Discipline

One of the biggest challenges in Little Bear’s growing world has been a struggle for the entire family: Getting along with his big brother.

Little Bear just turned two and his brother is three and a half. They’re eighteen months apart. Big Bear wasn’t a huge fan of getting a brother – he’d be perfectly content to be an only child forever – but I think by now he most likely doesn’t have many memories, if any, of being an only child. We wanted it that way. We wanted back to back newborns, back to back toddlers, back to back everything. We didn’t want to get over the no-sleep hump just to go back to square one.

The early days were surprisingly easy. It was nothing like everyone said it would be and I honestly didn’t regret our decision for even one second. Papi Bear and I were doing high fives all around over our brilliance and blowing raspberries at all the people who said 3 was the perfect age difference.

Then Little Bear became a toddler. A developmentally delayed toddler.

Holy freaking Christ.

So now I have a recently-turned terrible two year old with a limited vocabulary and ability to understand and a slightly developmentally delayed 3 year old who is bossy as hell and doesn’t understand that his brother doesn’t think the way he does.

Examples of their “brotherly love.”

Snack time:

Big Bear: Mama, Big Bear no quiere fishies.

Mama Bear: Daselos a Little Bear.

Big Bear: No. Quiero fishies.

 

Play time:

Big Bear just randomly grabs Little Bear’s favorite puzzle and dumps it upside down. Even if he’s not playing with it. ESPECIALLY if he’s not playing with. This drives Little Bear into a rage because it’s his FAVORITE PUZZLE.

 

Bath time:

We just replaced all our bath toys for Little Bear’s birthday. Both of them want the new basketball net. Neither one wants the fishing rod. Little Bear pinches Big Bear for it. Big Bear screams and kicks Little Bear. More pinching. Big Bear elbows Little Bear in the face and cuts his lip.

 

I’m sure a lot of it is just what you would expect with the terrible twos and a three year old. Also, Big Bear was never a “terrible” two, but he’s definitely had his moments at 3. He’s also slightly delayed developmentally, though not nearly as much as his brother. Nobody has suspected autism, though we do plan to have him tested once everything has been done for Little Bear. Add into that the enormous amount of attention his brother has been receiving since his diagnosis. He only goes to school three days a week now and gets to hang out with mommy when he’s home. Mommy and Papi pay huge amounts of attention to him, trying to capture his gaze and keep it. Everything is “Little Bear, look! Little Bear, hello! Little Bear, I love you!” Lots of stories, lots of laps, lots of playtime, since that’s when he makes the most eye contact. Big Bear feels pushed aside at times.

We’ve tried to compensate. I give him extra long hugs and have long talks with him in the car. I let him help me cook, I ask him to help out with labeling the baby books when we’re reading together, and I do double pony rides. We bought annual passes for Disney World this year and plan to visit at least once a month while we can. Big Bear especially loves Animal Kingdom. He calls it “Alemanes” and it cracks us up every single time. But even at Disney, he feels like it’s more about his brother sometimes and we just don’t know what to do for him. Right now our plan of action is to tag team, but when my husband is traveling, that never works.

Hopefully things will improve after this year. Everything is a phase. That’s what I keep telling myself.

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.

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.

Sibling Rivalry

Although he’s never received a diagnosis, it wouldn’t surprise me one bit if big bear were also on the spectrum. He called everything in the world “gata” until he was about 2.5 and he didn’t start using 2 word phrases until closer to 3. He’s never really cared to hang out with other kids, he loves doing the same puzzles over and over, making Miami traffic is his favorite pastime, and we’ve had more than one stubbed toe from can stacking. When we’re outside, he has to touch every single sprinkler in sight or he gets very upset. He calls them “eh eh.” He also can’t tolerate having the trash cans at the curb after the garbage truck comes. Those “neh heh heh”s need to be put away immediately.

He aged out of Early Intervention and was placed into VPK3 in a regular public school. He thrived. Within a month, he was singing songs, using full sentences in two languages – our family is bilingual – and his tantrums from not being understood all but disappeared. He’s still a little bit behind the average three and a half year old, but we are thrilled with his progress. His bowel control has regressed during summer vacation, but his language and social skills continue to grow. We’re very happy with his progress and have not sought further treatment as a result.

Little bear is significantly further behind where his brother was. His eye contact is about 25% of the item. He smiles at us when we catch his eye and he adores peekaboo and hide and seek. He says about a dozen words combined between our two languages spoken in the house. His two-word phrases are memorized phrases, rather than spontaneous speech: Bubble pop, high five, and all done.

Since he received his PDD diagnosis, I’ve taken huge steps to work on little bear’s speaking skills so they don’t completely fall away. Today he started saying “hola” again and he said “bye bye” to every single person we left. He said bubble with mommy and grandma and grandma said he said dog to the TV when he was watching Lady and the Tramp. I turned his carseat forward facing despite recommendations so that I can turn around and make eye contact at red lights. I sing to him and narrate what we’re seeing in the car. I hand him toys and tell him about them. In other words, I fill him with language and hope he catches a few words here and there.

Big Bear has noticed a difference. Little bear received his diagnosis on Monday and it’s Wednesday today. I teach at a local college on Monday and Wednesday nights and my husband is out of town, so my mother watched the boys on those two nights. They were fine on Monday, she said. It was a normal day, as far as my older son knew, and they both went to bed without incident.

Tuesday was a different story.

A friend from nursing school who has an autistic son told me, “You can’t let them see you cry or suffer. They can sense it. You have to show them how strong you are so they feel strong, too.” I failed at this advice with spectacular grace.

I picked the boys up from school on Tuesday afternoon and we went to dinner with my mother. Little bear did not want to sit still because he was hungry and Big bear didn’t want to sit still because his brother was acting up. Little bear was walking up and down the aisle of the restaurant laughing and giggling because I was telling him to come back. Big bear was trying to do the same, but I kept telling him he had to sit down. He responded by telling his brother, “Little bear! No do dat! No do dat, Little Bear!” Little bear could give a crap.

The jealousy grew after they finished eating. I went to wash Little bear’s hands and Big bear wanted to go, too, but had to go through the entire bathroom and close every single door that was open. He doesn’t like bathroom stalls to be open. After washing hands, we went back to the table. The check still hadn’t arrived. My mother told me to take Little bear outside because he wasn’t able to handle it anymore. We went outside so he could run around for a bit. Big bear wanted to stay with Grandma. But he also wanted to go outside. Which led to a meltdown. He stayed inside and ran over to me and glued himself to my leg as soon as we were outside.

That night I tried doing some language practice with Little bear. I repeated words from puzzles over and over. No response. He didn’t even look up. I pointed to myself and said, “mama” while doing the sign at least two dozen times. Not even a glance. I cried. Both times I cried. Big bear came over and said, “Mama, why you crying, mama? Why you crying?” I hugged him and told him, “Teddy is sick. We have to help Teddy learn.”

I hugged my Big bear extra super hard that night. When he woke up around midnight to use the bathroom, I let him come into bed with me for the second night in a row. He wants his mommy. He misses his daddy. He’s confused about his brother.

Today when I picked him up before going to work, he threw tantrum after tantrum in the house. I had to remove him from the room and hold him close, reassuring him that mama loves him just as much as always. Mama will always love him. Mama might be spending time with Little bear, but she loves her Big bear equally as always.

I put his favorite movie of the week on and snuck out of the house to go to work. My mother said they both behaved the rest of the night, but I’m sure this is just a very small sampling of what’s to come in the years ahead. I just need his dad here so we can take turns being alone with the boys and giving them their own one-on-one mama/papi time.

Today I feel better, though. I haven’t cried since 8PM. Unfortunately, at 8PM it was in front of my entire class when I explained why I was a bit “off” the past two nights. One of the students came up to me afterwards and told me her niece is autistic and she will ask her brother in law for resources for me. I have wonderful students.