Music

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

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

There are moments that the words don’t reach.

There is suffering too terrible to name.

You hold your child as tight as you can

And push away the unimaginable

….

I spend hours in the garden

I was alone to the store

And it’s quiet uptown.

I never liked the quiet before.

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

And I pray

That never used to happen before.

 

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

He is working through the unimaginable.

 

There are moments that the words don’t reach.

There is a grace too powerful to name.

We push away what we can never understand.

We push away the unimaginable.

Guilt

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

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

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

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

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

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

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

Acceptance

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

Then today happened.

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

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

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

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

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

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

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

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

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

Little bear is autistic.

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

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

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

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

A Good Day

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

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

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

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

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

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

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

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

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

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

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

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

Today has been a very good and very productive day.

Sibling Rivalry

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

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

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

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

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

Tuesday was a different story.

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

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

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

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

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

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

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

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

 

Woo Woo Train

Aside from the obvious social challenges that lie ahead for my family, another often-overlooked challenge lies before us: Sifting through the search results from real doctors and Dr. Google.

I’m sure every parent’s first reaction is to google “autism” and hope there’s some magical cure out there. I don’t kid myself. I know there isn’t. I took the woo-woo train for one stop when I was pregnant with little bear and I have no desire to reboard now that he’s being diagnosed.woo train
See, his brother was breech presentation. My OB at the time suggested I try the Webster technique to make him move. 80% success rate, she claimed. And stand on my head in a pool or against a wall and put frozen peas on my stomach. The baby will move down. Yes, a woman with a medical degree from an actual university told me to do this. And, because I trust doctors from actual medical schools with university degrees, I believed her. She really pushed me away from doing ECV, which was actually my best option for having big bear turn, I found out two years later.

At 36 weeks, he was still butt down. I asked to plan a c-section. She said to wait another week. I waited another week and requested again. She said, “Let’s wait until you go into labor. Sometimes babies flip at labor.” I said, “Let’s not. I don’t want to go into labor if he’s head down. I’m already terrified of the needle going into my spine, so having that happen while I’m having a contraction is not appealing to me. I want a c-section.”

At my 38 week appointment, she finally granted my desire. I was scheduled to deliver at 39 weeks. I had an uneventful planned c-section.

The internet told me that was wrong. That was bad. I needed to have a vaginal birth and it was possible and safer. Basically, I wasn’t a mother unless I had a vaginal birth. Oh, and I had to go into labor on my own. None of that induction stuff.

I switched OBs. I was told around 37 weeks that I should start thinking of a c-section, since I hadn’t dilated. I asked not to see that CNM again. I went to 40 weeks and still nothing. At 41 weeks, they told me to go in for a BPP. I did. Everything was as perfect as perfect can be. I breathed a huge sigh of relief. The CNM wouldn’t discharge me, though. I felt like I had been “trapped.” She insisted on inducing me at that moment. My anxiety started to kick in because I was starving and my 18 month old was there and I didn’t want my husband to leave me.

I was induced for 12 hours until my regular OB was on call. We had a long talk about pros and cons, risks of both decisions. He said he would give me 3 days. If I wasn’t in labor on my own, I had to come back and be induced or have a c-section. My choice. I agreed. I was back the time/date that he decided and I was induced. 33 hours later, I was holding my son in my arms.

I breastfed him, just like I was supposed to. For  a full ten months. I even got into full-on fights with people in stores who told me to be more modest or that you were too old to be breastfeeding.

According to Dr. Google, I did it all right. Vaginal birth. Never a drop of formula.

Shortly after you were born, I found a group on Facebook that really opened my eyes to the pseudoscience that surrounds birth and how even educated women accept it as fact. It made me skeptical about everything and it taught me to really question sources when it comes to childbirth.

Now I’m facing life raising an autistic child and I’m looking at websites and I’m not sure who’s Dr. Google and who’s a real doctor. It’s like starting all over again from nothing. And really… all I want is a list of evidence-based exercises I can do to expand my son’s vocabulary.

Perfection Shattered

unnamedWhen your brother was 8 months old, we decided to start trying for a second child. I knew the moment I was pregnant with you. I just felt pregnant. I felt feverish. There was a slight cloudiness over my brain that fogged everything I did. I knew. I took tests daily until one finally came up faintly positive just 9 days after conception.

I was pregnant! On our first try.

The pregnancy was uneventful. To be perfectly honest, I had so few symptoms that half of the time I didn’t even remember I was pregnant. I felt this pit in my soul that I would lose the pregnancy, as I had with my first pregnancy before your brother was born. I just always felt something was wrong. Almost an impending doom.

But you grew and you were healthy and you were born post term, but as perfect as can be. They placed you in my arms and I cried. I held you, smiled at you, and named you after my father, who left this world when I was seven, and your paternal grandfather, who had departed just two years earlier.

My perfect pregnancy turned into a perfect newborn. You latched so well even from the first day. You nursed like a champ. Your brother never nursed as well as you did. It was very stressful and had caused me PPD and suicidal thoughts. Your newborn period was so peaceful. You nursed without issue and slept through the night even at a few days of life. We called you Powerball because you were the most perfect baby we could have asked for.

Everyone loved my little Bear. I remember one of my friends saying, “Big bear is sweet, but little Bear… he’s just the nicest, sweetest little boy in the world. He’s so special.” I felt so proud to be raising such a wonderful little boy.

You didn’t like the bottle. You wouldn’t swallow with it. The milk just dribbled out. We tried preemie nipples and you struggled with them as well. Your weight slowly went down. At one point, you were in the 0 percentile. You stayed there for a long time. You had failed the newborn hearing test. You weren’t eating because you were dizzy, they said. You weren’t looking at me when I said your name at nine months because of the fluid in the ears. Everyone blamed your ears. Always your ears.

We finally got an appointment with an ENT. You weren’t talking yet. You weren’t walking or even cruising. You crawled late. It was your ears. Always your ears.

I distinctly remember leaving your 6 month visit and shouting your name at you and you didn’t respond. I was terrified that you were deaf.

Today I wish you were deaf. I know what the prognosis for deaf is. I know what to expect with deafness. I know that your life would be completely normal but without sound if you were deaf.

I don’t know what your life will be now.

I did everything right for you, my little bear. I had you evaluated by Early Intervention twice. The first time, they said you were fine. The second time, they dropped the ball and you didn’t get therapy for a full four months. Within a month, your SLP said that she suspected autism and you were in the neurologist’s office the following Monday because of a cancellation.

The doctor didn’t sugar coat it at all. He said you weren’t making eye contact with me. I had never realized it. You didn’t respond to your name at all during the visit. He said your playing isn’t actually playing with others – it’s getting others to entertain you. My entire view of you, my perfect little angel, shifted.

A friend who works with autistic children told me, “He’s still the same child today that he was yesterday.”

You say that, and I know you mean that, but as a mother of an autistic child, he isn’t the same child today that he was yesterday.

Yesterday when he pushed the button on his Little People school to get music and then started bouncing, he was dancing. Today he’s doing a repetitive behavior.

Yesterday when he put puzzle pieces in my hand because he couldn’t figure it out, it was an adorable way of asking for help. Today he’s using me as a tool instead of communicating.

Yesterday when he cried because I left him at school, he had separation anxiety. Today he just has anxiety.

Yesterday he was perfect. Today he has autism.

Today I have to pick up the pieces of my shattered heart and try to put them back together and move on with this new hand my family has been dealt. And I have to do it while my older son, who may also be on the spectrum, asks me, “Mama… why are you crying?”

The road ahead is long, but I must prepare for it. We all must prepared for it.