New Year, New Milestones

I have seriously slacked on updating this blog due to a number of life events that have occurred in our family. Everyone is healthy, thankfully, but real-life often complicates taking the time to sit down and write it out, so forgive my lateness in updating.

Little Bear is now about 18 months into his autism journey and he is progressing in stops and spurts. This is not a negative thing, mind you. Progress is progress. Little Bear simply internalizes his lessons and shocks the heck out of us all after a month of doing absolutely nothing.

For example, he just started saying “I want (noun)” clearly over the past month after intense pushing from his therapists. He no longer signs and does not require much prompting to do it, although he rarely says it spontaneously. That said, today we were having New Year’s Day dinner and his brother stood up to leave when he was finished with his dessert. Little Bear yelled, “BIG BEAR! EAT! Mama! Big bear! Eat!” He was tattling on his brother! Little bear was yelling at me to make his brother sit down and eat the rest of the food that was on his plate!

We have also come to realize that Little Bear adores music and being on stage. He first showed us this at a Halloween festival near our home. They had a stage set up and a DJ playing pop music. All the kids were on stage in their costumes dancing. When they came down in a conga line, I tried to get Big Bear to go in, but he refused. Little Bear, however, pushed himself into the line and followed the kids back on stage, where he danced away for a good 30 minutes, watching the other children and imitating their moves. When the police chief of the city came on stage and asked them to take a seat, he took a seat, just like all the other children. He repeated this love of dance at his school’s Christmas show. When the class finished singing the African Christmas Carol and Oh Dreidel, there was  a pause and Little Bear looked around, started clapping and yelled, “YAY!” Giving the rest of the audience permission to cheer. We are thrilled to know that he enjoys the stage and we plan on signing him up for salsa lessons as soon as he’s old enough as well as theatre classes.

He also loves to imitate cartoon characters. His favorite movie is definitely Lego Batman. When Batman reveals himself in the beginning, he goes up to the screen and says, “NUTS? Come on! Nah-nah NUTS!” (“Nuts? Come on! Let’s go nuts!”) and then dances/sings to the rest of the song. The Many Adventures of Winnie the Pooh is another favorite, as well as the live action version of The Jungle Book.

His vocabulary is growing by leaps and bounds. He does three and four word combinations to try to explain what he’s observing. He’ll look out at the daytime sky and say, “Black. Moon. Night.” Trying to explain how it’s different from the daytime sky.

Empathy has begun to emerge. Yesterday his brother fell, scraping his foot and breaking his lego castle apart. He started bawling (mainly over the legos). Little Bear went over, pat him on the head and said, “Sana sana. Sana sana.” My heart melted into a warm pool of pride.

As for a few of the difficulties…

He still isn’t completely potty trained, but he urinates in the toilet whenever we take him in and has very few accidents. He has a lot of work to do with poop. He neither holds it in nor tells us. It’s been a few weeks since he’s pooped on the toilet at all.

We finally got an appointment with neurologist number 2 on our insurance list. We are extremely unhappy with his original neurologist and his lack of interest in even opening our son’s file before appointments. We wanted to switch to another doctor in the office, but they wouldn’t let us. It took a year of calls to get an appointment with the second office our insurance offers appointments with. My husband called on Thursday to confirm the time/date of his initial appointment. The secretary informed us that the doctor was retiring and letters had been sent (we didn’t get one, although a friend whose daughter goes there did that same day). They wanted to make us wait another three and a half months. Keep in mind… This was 10 months of calling just to make the appointment. Then another 3 months of waiting for the appointment to come. The appointment is less than 3 weeks away. And they canceled it. Livid is not the word. My husband put in a complaint to the supervisor. I put in a complaint to the insurance company. Within 24 hours they were miraculously able to move us to another doctor who has an opening on the 10th. Hopefully his old neurologist can get his paperwork there in time.

And this is where we are right now. We’re on winter break from school. We’re very happy with Little Bear’s progress and the future is not nearly as uncertain and terrifying as it was a year ago at this time. All of Little Bear’s therapists seem confident that he will be one of the lucky children who grows up to be high functioning and have an independent life where autism doesn’t hinder his ability to function in society.

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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!

Transition Meeting

Little Bear is currently in an Early Intervention program through the state. His birthday is in August and he will be turning 3, aging out of his program. He is expected to start a public school pre-K program at that point. Big Bear was in a similar program for neurotypical kids because he wasn’t speaking and has some social issues and he really blossomed when he began school. We’ve been waiting excitedly for Little Bear to reach this point.

Little Bear wants to start school desperately. His brother is in a summer camp program at a local Catholic church, which we call Solcito Camp. He calls church Solcito. I don’t know. We just roll with it. Anyway, every time we go to pick him up, Little Bear runs into the room and starts playing with the toy kitchen. Today we went in and they were having a dance party. Little Bear just started getting down. He was stomping, singing, dancing, and having an awesome time. His hardcore home schooling and therapy has helped him a great deal over the last few months, but he really does miss the atmosphere of school and being around other children.

We got to his transition meeting earlier than expected because I picked up the wrong paper from my mailbox. I thought it was at 8, but it was really at 9. For some reason they had a translator there for me, but I gave her up for another family whose translator was running late and was in desperate need of someone to help out with their twins.

Little Bear was his regular self during the evaluation. He talked a little bit, but not much. He played, used his social smile, but didn’t always follow directions. Getting him to stay on task was a challenge. Getting him to say two word phrases besides “I want” was not happening. However, within five minutes of the evaluation beginning, the psychologist and developmental specialist both said, “Look, we can’t diagnose your child. Also, we should let you know that none of this information will be shared with your medical provider unless you choose to share it, but we personally do not think your son’s final diagnosis will be ASD. We see a lot of children come through here with an ASD diagnosis and if your son is on the spectrum, he is very high functioning. We’re not saying he’s not autistic. We’re not saying he’s where he should be. We’re still filling out the forms for the autism class evaluation, but we do not expect that he will be placed in an ASD classroom. He just doesn’t fit the criteria of the other children who are placed there and he most likely wouldn’t improve as quickly as he would in other rooms.”

Papi Bear wasn’t with me for the evaluation – he had to attend a conference out of town – but when I told him over the phone later on, he was thrilled. He said I had made his entire week. Little Bear’s diagnosis has always been difficult for him to deal with because of cultural differences. It has been compounded by the fact that he usually performs better in the mornings and he only really sees him in the afternoons after he’s worn out from 6-8 hours of therapy a day. This made him feel like his child has more possibilities to reach his potential. I think Papi Bear still has trouble grasping the idea that autism doesn’t mean Rainman or rocking in the corner. I think he also carries personal fears that he may be autistic and, therefore, the cause of his son’s neurological differences.

And that’s where we are now. Our next meeting is on August 8th, four days before Little Bear’s 3rd birthday. We’ll find out what school and classroom he’ll be assigned to. Fingers crossed that he gets a full day schedule and that they let his ABA therapist go in to see him at school.

“I don’t think his final diagnosis will be Autism.”

In 2002, I met a girl online while searching for other fans of a Spanish pop singer. We quickly became friends and, when my best friend died of lupus a year later, she was a huge support for me. Fifteen years later, we remain close friends and confidants. During those fifteen years, she went on to become a Pediatrician. Dr. Friend now works at the clinic of a prominent hospital in her city.

She lives far away from us, so she hasn’t seen Big Bear since he was a baby and this was her first time meeting Little Bear. She knows that Little Bear has an ASD diagnosis and I had told her about my husband’s freakout on Monday.

Little Bear has done phenomenally at home with me this past week. On Monday, he was throwing tantrums and wouldn’t sign “want” at all. Today he didn’t throw a tantrum until 3 hours into our day when he was legitimately tired and done. When we did our puzzle together, he not only signed “want” every time, but he coupled it with “Yo” (“I” in Spanish) and the name of the animal that the piece was related to. This was after only four days of working with him at home. He is like a different child.

So it was this Little Bear that Dr. Friend met. She gave him a board book of Brown Bear Brown Bear What Do You See and, after reading it twice, read Dr. Seuss’s ABC with him. She was surprised to see that he knew huge portions of the book by heart and was able to turn the pages with minimal help.

Later, we took our cat to the vet since she had been suffering from a UTI for a week. Little Bear fell asleep in the car on the way. I asked Dr. Friend to stay in the car with him while I took the cat and Big Bear inside for our appointment. At some point during the appointment, he woke up and she brought him inside and showed him the cats and the fish. During the entire time, he was well behaved, held her hand, and smiled at her while he laughed at the animals.

Later that evening, Papi Bear and I took her to a Brazilian restaurant for live music and too many caipirinhas. After two or or three, I asked her for her opinion on Little Bear.

“I only just met him, but I don’t think his final diagnosis will be autism. He doesn’t exhibit a lot of the signs of children on the spectrum. He is delayed linguistically and socially, but he was completely fine spending time with me and he’s very interactive with people he knows. He’s very affectionate, he follows directions or he at least understands them and chooses not to follow them.”

She advised us to continue with his therapies, get as many as possible, have him in the special needs school for at least a year, but she thinks he will eventually mainstream.

I think this is what my husband needed to hear and I do think her comments are more along the lines of what the neurologist feels, even though his therapists and pediatrician continue to say he is autistic. Ultimately it’s the symptoms that matter rather than the actual diagnosis, but to hear from a trusted friend that he is social and cognitively where he should be definitely relieved some of my anxiety.

The stages of grief

I’ve been in the acceptance phase of Little Bear’s diagnosis for a long time now. I spent weeks crying, blasting my self-soothing music, crying, “Why my son? Why my baby?” at absolutely no one. I mourned his differences as if I had lost a child. I did lose a child. But in losing the child I imagined he was, I began to meet, love, and adore the child he is.

This morning we started our homeschool sessions. I think everything went well except for table time. We definitely need to work on table time. His ABA therapist came at ten and he did a wonderful job reading books with her and taking breaks before transitioning back to his assigned activities. She gave me ideas on how to organize his day and get him to do what he needed to do. When she left, I felt very positive about his future. He knew at least two words on every page of the Dr. Seuss ABC book, he named my sister, my mother, and my mother in law and he asked for food every time he wanted it. To me, it was a very successful day.

I filled out his transition papers for preschool. I requested a special needs school with complete knowledge and acceptance that this is what my son needs. It was a good day.

My husband has also gone through stages, but today was not a good day for him. Little Bear was rolling his head back, not answering to his name, and being generally disinterested in anything my husband said or did with him. On Mondays and Wednesdays I teach at night, so I wasn’t there to help get him back on track or figure out why he was derailed at dinner/bedtime.

I came home late from work. I had papers to grade and tests to write and I always work more efficiently from my office or a classroom compared to my home. I came in and my husband was on the couch, classical music playing, feeling very down. He had been reading about ASD and was full of questions, the biggest one being: Why our son? Why our family?

He broke my heart more than once during the conversation, although I didn’t tell him. The first time was when he said he didn’t want to have any more children because of the risk that another one could have ASD. I very much want a third child and Little Bear isn’t confirmed ASD yet. He has ASD-like symptoms, but his neurologist is heavily leaning towards delayed myelination. Since delayed myelination isn’t genetic, I see no reason not to have a third child. I want a third child. I very much want to have a third child in the next year.

As he kept saying what pre-occupies him and what scares him and what his fears about the future were, I tried to remind him repeatedly that our little bear is not a lost cause. Looking at where he should be cognitively, he hits every single milestone except following two-step directions. When looking at what a 3 year old does cognitively, he does everything except turning a doorknob and playing make believe. His delays are purely linguistic and social in nature. I have no doubt Little Bear will eventually mainstream once his language skills take off. How easy school will be for him is another question. My husband doesn’t seem to share those feelings. He fears Little Bear will be in a home and need constant care for life. I just don’t see that happening. His language was at an 11 month level 6 months ago. He tested at 18 months two months ago and he has gained an avalanche of words and phrases since then. He’s potty training on schedule like a neurotypical 2 year old. In other words, he’s making progress.

That wasn’t the moment that broke me, though. I asked him if he’d rather an autistic Little Bear or no Little Bear. The obvious response should be, “Autistic Little Bear.” His response was, “Please don’t ask me that.” My heart broke in that moment. My heart shattered into a thousand pieces because, while I’d love Little Bear to be able to walk through this world as comfortable as possible, the idea of this world moving on without him is a possibility I would never want to consider.

Then came the argument of secrecy. My husband does not like to tell people Little Bear is autistic. I tell people all the time. I really don’t see it as a big deal. I tell family. I tell strangers. I tell anyone that wonders why my 2.5 year old acts like an 18 month old. I think it’s better to be honest and have them treat him with kindness and empathy than have them think we’re awful parents. My husband has not told the vast majority of his family. He says, “I don’t see why they need to know. It’s private.” To me “private” means “embarrassing.” His family is “private” about anything and everything that can cause discomfort. I am not. This is a continual collision point in our marriage and I see it continuing to be so as we move forward with Little Bear’s treatment.

So now we’ve gone from having a venting conversation to not talking because I’m too public about Little Bear’s diagnosis. And that, too, breaks my heart.

First Sentence!

Little Bear was sitting in his seat the table eating his favorite food ever: smokey mozzarella salad from Fresh Market.
“Ques be shek.”

Papi Bear and I looked at each other. Little Bear pointed at the TV.

“Did he just say…”

“I think I heard it, too.”

We put Baby Shark on the TV. Little Bear got a huge sm
ile and started singing along.

April 11, 2017. The day Little Bear made his first non-memorized, not-requested sentence: “Quieres Baby Shark?”Screen Shot 2017-04-12 at 12.49.15 AM

Papi!!!

Little Bear has been going through a Papi Bear phase lately, but it has always hurt Papi Bear that he doesn’t say “Papi” (or Mama, for that matter). He’ll say it when he’s not around, he’ll say it when he’s gone, but he never says it to him, and that’s what really matters to us.

Today we decided Little Bear would come home from school at 11:30, because it seems that most of his trouble happens in the afternoon. Papi Bear dropped him off at 11:45. I opened the door and Little Bear smiled at me and said, “Hi!” I said, “Papi! He said hi!” Little repeated, “Hi, mama!” and giggled as I took him out of his car seat. I held him up to the window and he pointed at Papi Bear and said, “Papi!”

Me: “Dijo Papi! Lo escuchaste?!”

Papi Bear: “Parece que si, no?”

LB: Papi! Papi!

Papi Bear almost cried. I could see the tears as he said, “Por fin, hijo. POR FIN!”

And then LB proceded to have a complete meltdown because Papi Bear had to go back to work. Five minutes screaming at the door, “PAPI! DADA! NOOOOO!” I opened the door and he ran to the end of the driveway and looked for his Papi, screaming because he wasn’t there. I dragged him back inside and called Papi Bear through FaceTime. I handed Little Bear the phone. Little Bear calmed down. They “conversed” for five minutes and LB kept his own face visible the entire time. When Papi Bear said he had to go, Little Bear said, “Muah, Muah, Muah! Bye Bye!” and blew kisses to his Papi. He didn’t cry at all when he gave it back. He took his milk, went to bed and is now napping happily.

And Mama Bear and Papi Bear are both so happy with their little boy’s new milestone.