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.


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.

One Year Follow-Up

Little Bear was diagnosed with PDD-NOS in July of 2016. It was a devastating day for our family and I was overcome by a range of feelings ranging from fear to desperation to anger, culminating in an anxiety attack that I thought would overwhelm my entire being.  There is no way to easily describe how it feels to have your child’s future slip through your fingers like grains of sand, becoming indistinguishable from its previous self as it blends into the endless beach that makes up the Autism spectrum.

This past year has been filled with a number of ups and downs, many of which I’ve written about in this blog. We’ve gone from an almost-completely non-verbal 18 month old who was just starting to walk to a speaking child with a large vocabulary, but difficulties in sentence formation and word combinations. He can run, squat, and is trying to jump, even though he’s not quite there yet. A year ago he didn’t make any eye contact unless you were playing a game and he didn’t respond to his name. Now he makes eye contact most of the time, has developed joint attention, and he answers to his name most of the time. He’s a nice child and we’re very proud of his progress.

There have been ups and downs with providers. Finding a good support system of therapists is not an easy task. We found an excellent OT right away, but everyone else has been rough. We’re starting to settle in. We’ll see what happens in August when school starts and everything gets shaken up, but for now the therapy is settled and to our satisfaction.

Then there’s what should be the key component: the neurologist. At our second appointment in October, he went over the results of Little Bear’s MRI/EEG. He said Little Bear had a bright spot in the area where all of his symptoms were located. That, combined with his unremarkable genetic testing results, made him tell us that there was a very good chance that he actually had delayed myelination rather than ASD. He said, “Look. I’m going to give you the ASD diagnosis because you need it to get services. But honestly, I don’t think your son is autistic. We’ll know more in a year after you repeat the MRI.”

Days passed. Weeks passed. Months passed. Goals were made, goals were reached. Milestones were hit. Progress was achieved. We were very proud of our son and felt confident going into his MRI earlier this month.

I held his little hand while they burritoed him up for the IV. I stroked his hair as he fought the sedation. I rocked him and held him when he came out and tried to get him to eat or drink something so we could go home. When he was finally cleared for home, we had a weeklong waiting game in which we would wait patiently for his appointment so we would receive hopefully-good news from his neurologist.

The day of the appointment came. We went in, nervous for the results that would potentially be as life-changing for us as the diagnosis he received a year prior. We felt confident, though. We knew our Little Bear was slowly opening up to us more and more. We were sure that good news would come from this meeting.

We entered the room and the neurologist asked us when we were going to do the MRI. We looked at each other, confused.

“We did the MRI last week.”

“Where did you do it? It’s not in the system.”

“We did it at Hospital Where Big Bear Was Born.”

“Why didn’t you do it here at Big Children’s Hospital?”

“Because they called us less than a week before and told us that they no longer accepted our insurance. Then they called us 2 days after and asked why we didn’t come to our appointment and said they did, in fact, accept our insurance now.”

Dr. Neurologist looked up the MRI results on his computer and spent at most 1 minute reading them.

“Well, his MRI came back as normal. It says everything is unremarkable. The EEG shows improvement. It’s a much faster reaction time.”

Papi Bear and I start getting excited. Smiles abound. Holding each other’s hands a little tighter. This was incredible news!

Dr. Neurologist kept talking and saying, “Yeah, so nothing really interesting.” We were stunned. What? Nothing interesting? You literally just told us that our son most likely had delayed myelination. This is incredible news! We asked about this.

“Oh no, you just didn’t understand what I said last time. I never said your son might have delayed myelination. Your son is autistic. You need to accept that. It’s obvious.”

“Dr. Neurologist, you told us it might be delayed myelination at two appointments. You gave us in-depth descriptions of why. You told us, ‘I’m giving him an ASD diagnosis, but he might not have the same one in a year or two.’ This was the reason you ordered the MRI again.”

“Again, you misunderstood what I said. I never said that he wasn’t autistic or that it was delayed myelination. That’s something completely unrelated. Also, even though this came back as unremarkable, it was done at a different hospital and it was read by a different tech. There is room for error. You need to accept the results. There are studies being done related to genes, but when you have a gene that is multiplied or is irregular, there are currently no therapies to change it.”

I stopped him right there. “What are you talking about?”

“I’m talking about how autism is genetic and you can’t do anything about it.”

“Our son’s genetic screening came back normal. There were no markers for autism.”

My god if this man didn’t decide to do a 5 second diagnostic exam of my bored 2 year old RIGHT THEN AND THERE. Yep. He sure as hell did. He pulled out the diagnostic criteria for ASD and started asking “told you so” tone questions.

“Well, I can see right now he has repetitive motions. He’s walking in circles.”

“Actually, he’s singing his favorite song and it’s a circle song. He’s bored. He only walks in circles when he’s singing to himself.”

“But he doesn’t have joint attention. He should have had that a long time ago and he still doesn’t.”

“What are you talking about? We go to the park and point at planes together all the time when they fly overhead. His joint attention may not be perfect, but it’s there.”

“Does your child like Mickey Mouse?”

“I guess so. As much as the next kid, I guess.”

“Look over there! It’s Mickey!”

My son was facing the door because he wanted to leave, but he looked over to see what Dr. Neurologist was pointing at. Dr. Neurologist claimed he didn’t see it and tried again. This time Little Bear glanced for a second, but he already knew what was there, so why linger?

He wrote on his paper “NO” next to “joint attention.”

He went through the list… Questioned us. “Observed.” At the end, he paused… I knew why. Because I’ve done the MCHAT a thousand times. I do it every single month. And for the past 3 months or so it has always resulted the same: “At risk.” A year ago he was “high risk.” Now he’s “at risk.” He has improved greatly. He’s no longer a clear cut case. Dr. Neurologist seemed upset at our son’s five second diagnosis. He told us to come back in nine months.

Papi Bear and I left furious. We were both expecting our child to leave with good news and we felt that this doctor had not even opened his case file before we walked in. The tipping point for me was the spiel on genetics when our son’s genetic testing was clear. This told me that this doctor knew nothing about our son. He cared nothing about our son. He didn’t want to do anything about our son. He just threw him in a heap with a bunch of other kids and couldn’t be bothered to look up his records and see what he had said previously.

I called the office the following day to make an appointment with the other neurologist in the practice. No can do. They don’t do “second opinions” within  the same practice. There is one other practice in my county and we’ve been trying to get an appointment for a year now without success. I was in tears because nobody would help our child. I complained to Big Children’s Hospital’s complaint line and they said that this is a separate office that doesn’t represent them. I told them, “Like hell they don’t represent you. They have your name on their office and they are in your building. They most certainly represent you. They’re your neurologists on your website and I just want to see a different doctor because this one didn’t even read my child’s case file.”

Nope. Nothing. Can’t do a damn thing for us. They said they would talk to the office manager and get back to us. It’s been over a week and nobody’s called me. I’m not surprised in the least.

So that’s where we are now. We’re nowhere. We have a horrible neurologist who doesn’t look at our son’s data with an objective eye. We can’t get an appointment with another neurologist because there are literally none outside of these two practices. We paid for these expensive tests to be done and nobody bothered to properly compare them to the first ones.

I’m just done.

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