Big Family Trip

Screen Shot 2018-01-05 at 10.19.11 PMOver the summer we took a trip up north to visit family in Washington DC, Pennsylvania, and New York City. It’s a trip we try to take every two years, since both sides of the family live in the region and the boys have cousins around their own ages on both sides. It was planned as a pleasant two week journey through three states and a half dozen cities tied around a work party that Papi Bear had to attend in Annapolis.

Unfortunately, Hurricane Irma put a fast halt to the trip about halfway through. We live along the south eastern coast and there was a chance that we would have a direct hit. We realized this while visiting my aunt and great aunt and uncle in a rural part of Pennsylvania. We had plans to spend a nice day with them in a local museum, but we had to cancel and run back to Washington DC so Papi Bear could fly home immediately and secure our house. I was left with the children, basically waiting and hoping we had a home to go back to. The hurricane was predicted to hit on a Sunday, if I recall correctly, and we booked our flight back for Tuesday evening.

I called my aunt in Washington and informed her of the situation. The children and I were now staying three days longer than originally anticipated. Her response was, “Where do you plan on staying during that time?” I was a bit taken aback. I mean… I had other places and I actually had planned on calling other family, but I had assumed that given the fact that a Category 5 hurricane might plow into our home, she would open her doors to her niece and great nephews for a few more nights. I told her we would be staying with my cousin who also lives in DC.

We arrived to my aunt’s house and I packed the majority of our belongings into my husband’s bag, since he had the big suitcase attached to his ticket. I mean hurricanes almost always turn and airports open within 48 hours… It’s not like we wouldn’t be home in five days anyway. The family spent the night together at my aunt’s house and my husband left first thing in the morning. I had the kids out the door soon after to play in the park and stay out of my aunt’s hair. It was predicted to rain anyway, so I wanted them to have some fun before the downpour. It was clear that we were only welcome there one more night and I didn’t want to push boundaries or luck. She’s an older woman and never married or had children of her own. I have not-so-fond memories of how she treated me as a child, so I didn’t want my own children to have those types of memories of her. So far she had only been good with them.

When we got home, my aunt gave the boys two matchbox cars from the dollar store each. Little Bear started fighting with Big Bear over his cars and showed some of his typical aggressive behaviors that he was displaying at the time, heightened by the fact that we were on vacation, out of our home, and out of our routine. After the second or third time of hitting his brother, my aunt slapped him.

I told her not to lay a hand on my child. She said, “Well, he needs it. You’re not disciplining him and that’s why he’s so spoiled.” I said, “He’s not spoiled. He’s 2 and autistic. He doesn’t understand. He has the cognition of an 18 month old.” She said, “That’s just an excuse. It’s a lack of discipline.” She went on to complain about Little Bear’s autistic meltdown the night before when he was starving in a Mexican restaurant that, no joke, did not have rice or eggs. She also complained that I allowed him to play with a fork, which is apparently the sign of a bad mother. I told her I was leaving. She said, “Oh, don’t be that way.” I told her that if she can’t accept my children for who they are, then they aren’t going to visit. I can’t change that Little Bear is autistic. He gets intense therapy to work on his behaviors and he is improving by leaps and bounds, but it should be expected that a week away from home is going to bring out more behaviors from him.

I packed our bags quickly. I paused to think about who to call. I settled on a friend in New Jersey who also has children the same age as mine. She is from the same city I currently live in, so she would understand what I was going through, since her family back home was in the same situation. She said yes, of course we could crash at her house for as long as we needed to. No end date given… as long as it was unsafe to go home, we were welcome in her home. And let me add another note… I met this woman on the internet two years ago and we were phone friends who had never met in person. She opened her house to us. My own aunt slapped my autistic child, called him spoiled, and asked where we planned on staying. Sit on that for a moment.

Before heading to New Jersey, we stopped to see family in Philadelphia that we hadn’t been able to see before. I have a cousin there who, with his wife, adopted a little boy at birth around the same time Little Bear was born. This was the first time we were meeting their son. We had dinner with the family and then headed to visit my friend.

Nikita and her husband live in an upscale town and have two beautiful children: a girl who is right between both of my children in terms of age, and a 9 month old. We arrived late, so the boys went to bed immediately. The following morning, Big Bear started to play with Nikita’s daughter TT. Big Bear and TT hit it off right away and, to this day, are still BFFs and ask about each other often. We have them speak on the phone and we’ve been able to get them together in Orlando as well, where they had a blast together. Considering how shy Big Bear is around new kids, I was shocked and thrilled at how quickly he and TT became friends.

Screen Shot 2018-01-05 at 9.46.05 PM.pngWe spent four nights at Nikita’s house. We visited the zoo together, went to parks, and on Saturday I went into NYC to visit friends there and relieve her of our presence (although she later said she wished we’d been around because Big Bear keeps TT out of her hair). On Sunday it was clear that our flight was at very high risk of being cancelled. I started to freak out. I just wanted to go home. Never in my life have I wanted to go home so badly. It’s not that I wasn’t grateful to Nikita for her hospitality – I was – but I just wanted to be in my own city, in my own home, in my own bed. I looked up car rentals to leave from DC (where my car was due back). They were only $9.95 a day to pick up in DC and return a hotel very close to our house. I sighed. Could I do it? Could I really drive all the way home?

I rented the car, packed immediately, and started back to DC.

We were driving home.

Our route was from NJ->DC, return car, rent new car. We would spend the night with a cousin who lives in DC and then drive to South Carolina to stay with my sister for two nights, then home.

Our first leg was 4 hours. I learned to count long car rides in terms of 2 hour distances during this drive. The kids could get through 1.5-2 hours with their favorite toy/book and then another 2 hours with the ipad and then they would usually be able to fall asleep from boredom, if we hadn’t already arrived at our destination by that point.

We arrived in Virginia early and I took the kids to Monkey Joe’s to burn off energy until my cousin got off work. I stopped at Target to do some shopping for winter clothes, since I had sent most of our warmer clothing back with my husband and a cold front was coming through. I also bought a pair of earbuds with a microphone to avoid driving and calling/texting.

We had dinner with my cousin and her children and I put Little Bear to bed in the living room. I took Big Bear with me to the airport to return the car. The following morning we went to the park outside her house to play for an hour or two and then started on our way to South Carolina to stay with my sister. Driving time: 8 hours. It was not nearly as painful as it sounds, although it was pretty damn painful. The boys were well-behaved and I talked to a few friends on the phone to pass the time.

We arrived at my sister’s house sometime in the evening and ordered dinner from a nearby restaurant. The kids refused to eat what looked like the worst mac and cheese ever. Whatever. I put them to bed and crashed with them.

We went to a local children’s museum the next day so that their trip wasn’t completely awful. We had dinner with my sister afterwards and played on the playground at her house. We had planned to leave early the next morning, but I was reading on facebook that the trip home was taking three to four times as long as usual once you crossed the Georgia border and that there was no gas in sight. I freaked out. I went to Walmart and bought a gas can. Filled it up. Loaded the kids. And we left for home around midnight. I made a reservation at a Disney resort for the following evening because I knew that there was ABSOLUTELY NO WAY that Disney did not have power at this point. It was an 8 hour journey.

I stopped and refilled at every gas station that I saw once I was a quarter tank down. I also peed in a Big Gulp cup twice when the inside area of the gas stations didn’t have attendants or the kids were asleep. It was awful.

The drive was dark and boring. I played Hamilton over and over and over. Big Bear woke up two or three times. Around 4AM I felt myself fading. I pulled over, attempted to nap. About 10 minutes in, Big Bear starts talking to me. I was crying, “Please let me sleep. Just ten minutes.” I did this again around 5.

When we hit Georgia, the lights were all out and the sides of the road were a parking lot. All of the exits were closed. The number of vehicles that lined the shoulder started off in spurts, but turned into rows after a while. All I could think was, “Thank god I left at midnight because otherwise these cars would all be on the road.” Followed by, “Those lucky bastards are probably sleeping.

We arrived at Disney World around 10AM. I’m pretty sure I cried when we parked. Pretty sure. Checking in was a nightmare of a wait, since our reservation wasn’t tied to their app and we didn’t have Magic Bands, since we had literally just made the reservation the previous night. After a meltdown (from me) from waiting in an endless line the second

Screen Shot 2018-01-05 at 9.44.37 PM.png

time – just trying to get my room number – a manager took us into a room, calmed us (me) down, and gave us three extra fast passes for the day.

We went to our room. I was totally 100% ready to sleep. Not the kids, though. They were bouncing off the goddamn walls. So I drove us to Magic Kingdom and we rode a few rides, heading back to the room around 5 or 6. We all crashed immediately and slept until 8 the following day. I don’t think I’ve ever slept that well in my life.

The next morning we checked out and went home to start the adventure of no electricity post-Irma. Luckily our house, cars, and property sustained only minor damage.

Advertisements

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.

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.

Playground

Little Bear has been getting 15 hours a week of ABA for about 3 weeks now and the improvements have been measurable. Today he was eating his dinner in his high chair and he pointed to the napkin holder and said, “Yo ee ne.” Which is close enough to, “Yo quiero (whatever – you pointed!)” for me to be thrilled. Tuesdays are always especially hard for him because we have PT at my mother’s house, ABA for three hours at home, barely a 2 hour nap, then SL, followed by another hour of ABA. Since he did so well, I took him and his brother to the park.

The boys were running around, having a great time. Big Bear, who is four, insisted on taking his matchbox space shuttle with him. He was running around the playground, Screen Shot 2017-06-20 at 11.38.07 PMclimbing and playing with the shuttle when this slightly older child, maybe 5 or a young six, came over and tried to take it from him. I noticed immediately that the child was almost certainly on the spectrum. He was not making eye contact, he was not noticing anything except the space shuttle – even when he pushed my son, he never looked away from the toy. I intervened and told the child, “Let’s put the toy away so we can play together.” The child did not look at me and said, “My shuttle.”

The boy’s mother came over and looked mortified. I said, “Oh, don’t worry. My younger child is similar.” I smiled, trying to signal, “It’s okay. My son’s on the spectrum, too. It happens.” Her response was, “I hope not. Of course I have the kid who likes to mug other kids on the playground. It’s because he’s an only child. He doesn’t understand that he needs to share.” She reminded her son that he has five shuttles of his own at home. I later saw her leading him around with a backpack style leash on him.

It was at that moment that I felt a profound pity for that child. Could it be that his mother didn’t realize or want to admit that he has special needs? This child was at least kindergarten age, if not first grade, and he spoke to me on the level of a young two year old. It really hurt to see a child that may have had the potential to obtain fluent language and develop social skill muted by a parent who just explained away the differences.

I sincerely hope, with all my heart, that she was simply embarrassed by her child’s behavior and that he is, in fact, receiving a full schedule of therapy. No child deserves to be denied his or her future.

“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.