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

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

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

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

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

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

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

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

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

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

The stages of grief

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

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

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

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

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

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

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

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

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

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

First Sentence!

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

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

“Did he just say…”

“I think I heard it, too.”

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

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

Papi!!!

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

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

Me: “Dijo Papi! Lo escuchaste?!”

Papi Bear: “Parece que si, no?”

LB: Papi! Papi!

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

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

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

Transitions

If Little Bear could stay in one area and do his thing and then move to another area of his choosing at a time of his choosing, he would be the happiest little bear in the world. However, the world – and, more specifically, school – does not work that way. Little Bear struggled and dealt with it at Fancy Child Care Center and was starting to show huge improvements in his socialization and participation. He went from a year behind to about 6 months behind. He’s been at Fancy Religious Child Care Center for two weeks now and he has tanked.

We don’t blame the school or the teachers – not in the least. They’ve been nothing but wonderful to us and to him. They keep in close contact through messenger and send us daily pictures and videos. It’s really a phenomenal school that we’re very excited to send our older son to over the summer. However. HOWEVER. Little Bear… not impressed. At all.

He throws toys, snatches them from other children, refuses to participate, and doesn’t want to play with other kids. He’s basically just mean. He’s even been less cooperative with his therapists since leaving Fancy Child Care Center. He’s begun to bite and scratch more often, too. Even at home, he bites me at least once a day in sensory-seeking or attention-seeking ways.

The cause… well… we’re not sure. It could very well be the ear tubes falling out. I can’t imagine how it must feel to be dizzy and hear everything like you’re underwater. And to combine that feeling with a new school where you don’t know anyone and are not familiar with the routine… That’s difficult. I know he’s struggling. I see him struggling. Before I’d always take him every day we paid for, even if I wasn’t working. I knew he’d get the benefit of circle time and playground interaction. Now, I keep him home and we go to the park together instead. Every day I worry about getting a message about him biting another kid or snatching toys or just generally misbehaving.

Papi Bear and I had a long talk about it last night. It came down to this: We put Little Bear into school for socialization. He is not socializing. He actively avoids other children as much as possible. We don’t know if it’s him who is regressing or if it’s the transition that’s tough on him or if it’s the hearing issues that are making him irritable. Our final decision is that we’re giving him two weeks post-op to improve. After two weeks, we’ll meet with the director, the school’s counselor, and one of his therapists and decide if there’s been improvement and, if so, what can be done to help him along. If there isn’t improvement, we will pull him from the school and I will change my work schedule from 830-5 to 1030-7/1130-8 and begin to homeschool him in the mornings and schedule his OT and SLP in the afternoons while I’m working.

We don’t think Little Bear has regressed into a closed-off state. He’s not making as much eye contact, but when you get up in his face and start sticking your tongue out or playing with him, he’s back to normal. When he’s in the dark, he’s actually really playful. Every night this week we’ve had to go into the boys’ bedroom and yell at them to get to bed because they’re both in Little Bear’s bed, playing, tickling, and laughing. We’ve seen his little personality come out. We know he’s a social kid, albeit a bit awkward, but so were (are) both of his parents. We just need to get him in a situation where he’s getting the attention he needs in order to thrive.

And that’s where we are. We’re at a point where Little Bear will take the lead and show us what he needs. If he needs Mama Bear to make a homeschool for him for a few months, so be it. If he shows us that it was completely the tubes and he’s back on track once they’re in place, then we’ll stay in Fancy Religious Child Care Center. Whatever is happening, we’re very glad that his school has been extremely supportive and not accusatory towards us. That goes a long way when your child has special needs.

Big Day!

Even though Little Bear is struggling without his ear tubes, he continues to move forward in other areas. The past three days, he’s consistently peed in the potty almost every time we’ve presented it, both sitting and standing. Papi Bear doesn’t recognize what a big milestone this is for an autistic child, but I’m overjoyed that he knows what the potty is for and uses it. Our neurotypical son took almost a year to potty train – not counting the stress around pooping.

Moving forward every day… We’re so proud of our little guy!

Gifted

When I was a child, “gifted” was a bad word to my mother. I was labeled as “gifted,” but she refused to let me take gifted classes. After a year of repeatedly telling her how much more advanced I was, my mother relented and let me take gifted English/Writing. I have very few memories of second grade, but I remember that class and how much I loved it. I wish my mother had allowed me to take other classes as well. I promised myself that when I had children, I would never stop them from reaching their full potential through gifted courses. Now, as a parent, I just want my child to mainstream and have a fulfilling life.

Little Bear is 2/3 of the way through his probation period and has had exactly one biting incident – and it was in retaliation to another child scratching his face to take a toy, so we forgave it. He was also bitten pretty badly by another child in the classroom, but the teacher didn’t notice, so we have no idea what happened there. A sigh of relief is being breathed all over our household. We hope that he can stay in school because he needs it.

screen-shot-2016-12-19-at-1-30-44-pmLittle Bear’s communication is progressing rapidly. He’s learning lots of new words and starting to use signs consistently for words he’s unable to say clearly yet. He’s learned a lot of new words from the youtube station “BabyRadio” and makes the noises for the animals whose names he can’t say. He’s using the signs for more, bye bye, hello, again, and all done consistently and he’s constantly throwing in new signs that I have to ask friends who are hard of hearing to interpret for me.

Watching him grow and mature makes me thrilled beyond belief, but I still mourn the fact that he isn’t where other children his age are. While other moms compare how advanced their children are, I continue to be proud that today he followed most of the directions I gave him, even though he didn’t answer any of the questions I asked him.

I wish my life followed this e-mail that I received from Baby Center. I would love to be concerned about what area he’s “gifted” in, but instead I’m celebrating the fact that he clearly yelled for “Papi” on Sunday when my husband was the only one who hadn’t gotten out of bed yet. It was the first time he had clearly called for either of us multiple times, which brought Papi Bear close to tears. We realized that Little Bear does, in fact, know us as Mama and Papi, but he hadn’t realized that calling those words would bring us to him. I think he might be starting to understand the concept now, which is another milestone we’ve been waiting a very long time for.

Our child may or may not be gifted. We know he is a gift to us, without a doubt. Our life now is preparing our child to communicate effectively and make him smile with us. It’s piggyback rides and BabyRadio. It’s eating and stuffed animals. It’s realizing that the small things count and thinking maybe we’re lucky to get an extra year of baby phase with our boys. They grow up too quickly and we get to make it last a little longer.