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?”
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.
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!
There are a few moments that every parents holds their breath waiting for, knowing that that moment will forever change the relationship they have with their child. The first step. The first solids. The first time sleeping in their nursery. Perhaps the most eagerly awaited milestone is hearing your child say “mama” and “papa” with intention. When you have a child on the spectrum, this moment may be years off.
Little bear started talking on schedule. His first word was “all done.” He also picked up “high five” “ball” and “leche.” But no words to refer to Papi Bear or myself. We pushed him, urged him, prompted him, with no result. Our best outcome was the nonspecific “beh beh” to refer to either of us in times of separation anxiety.
Today I took Little Bear to the grocery store. He didn’t want to be in the car anymore and was getting whiney. I pulled into a spot and checked my phone for a moment.
No. I must be imagining it.
I wasn’t. Little Bear called for mama for the first time ever.
Papi Bear said he called him Papi clearly today when we left him alone with his OT for five minutes and he wanted him to come back.
One day at a time.
Oh, and his brother got a car bed today. He called it vroom vroom.
Last week Little Bear was approved for therapy through our private insurance to add on to his Early Intervention therapy. At the moment, he has 9.5 hours a week. We’re still waiting on an eval for private speech therapy, possible OT through Early Intervention, and a possible doubling of PT through Early Intervention. All in all, he may end up with 15-18 hours a week by the time we finish scheduling everything.
Little Bear is doing extraordinarily well in his new school and every day we see him more and more eager to go to class. He cried for 15 minutes after we left him on the first day, but Papi Bear said he just goes over to his seat and sits down with his breakfast when he leaves him now. His new PT told me she observed him for 15 minutes before she started her therapy with him on his first day on Thursday. She said he is very attached to the main teacher in the classroom and he likes to hold her pants and sit in her lap during circle time. The same teacher has told me he’s the sweetest little boy ever (except for the pinching) and that she adores him, so I’m glad he’s found a teacher at school that he can find comfort in while he’s away from Mama and Papi. We’re also thrilled to walk in at the end of the day and find him running around on the playground, rather than in a classroom or watching TV.
Today was a special day. A milestone day. Today was the day Little Bear picked up a remote, held it to his ear, and said, “Hewwo? Hewwo?” And then gave it to Mama to listen. Today was the day Little Bear truly played pretend and his Mama Bear’s fears lowered down one more notch. He can play pretend. My Little Bear can play pretend!!
The fears are still there. We still worry about the future. We still worry about the present and about the things we may have done to cause his disorder. We don’t, however, feel the terror that we felt back in July. Our terror has been replaced with hope: the hope that Little Bear will have the capacity to live a productive life in society and function as someone who is simply “different.” We’re okay with him being “different.” We’re both “different” ourselves. We just don’t want him to ever feel like he’s a burden to us or his brother. That is what we want for our baby boy.
And every day that goes by fills us with more relief that that will not be his case. We’ve passed the 3 week mark since Little Bear’s urine sample was given. The geneticist said that if he had something concerning like Fragile X, we would be called in earlier than our November 1 follow-up and the tests generally take 2 weeks to get back. I don’t want to say we’re in the clear for serious genetic conditions, but the stress has definitely gone down now that we’re heading towards a month since the second test was turned in.
For now, we’re just trying to pencil in life between therapy. Deep breaths and away we go towards the prize: our son reaching his full potential and finding coping mechanisms that work for him.
As Little Bear’s progress continues, our fears have slowly gone from high flame to a simmer. We’ve seen the neurologist, the geneticist, three physical therapists, two occupational therapists, a speech pathologist, and we have appointments with two ABA specialists at the end of the month. At first each new evaluation was a terrifying prospect that both Papi Bear and myself feared the night before. We knew our hopes and dreams for Little Bear would die a tiny bit more as his diagnosis was confirmed yet again.
Yet now, a month and a half after his initial visit, our fears have reduced to such a level that we’re almost happy to see new evaluations. Each evaluation he has seems to be less extreme than the previous one, showing us the obvious success that early intervention has had on our son.
For example, when we initially filled out his survey, we said he rarely made eye contact. This is no longer true. Little Bear doesn’t make normal eye contact by any stretch of the imagination, but he comes up to us and looks in our eyes spontaneously, always looks at us when we’re playing with him, and he’s even begun to look for approval after completing a task. These are big milestones to our family and we’re very proud that he’s been able to make significant progress after just a few weeks of therapy and work with his parents.
His vocabulary upon diagnosis was under two dozen words, but is at least twice that now and every day he seems to add something new. He knows his shapes, his letters, and his numbers now. He can name three body parts, a few animals, and he makes his likes and dislikes known through the word “no.” This is absolutely thrilling to us as parents, since just a few short weeks ago all he would say regularly was “leche,” “ball,” and “bubble.” Now he’s actually communicating with us.
Early Intervention is so commonly ignored by parents for whatever reason. I, personally, am a huge fan of taking advantage of it. It changed the outcomes for both of my boys and has put them on a direct path to success. I urge everyone who has even the slightest fear about their children being behind in anything to have their child evaluated. There is absolutely nothing to lose and an entire world of good that can be gained.
Little Bear’s vocabulary is beginning to take off. He doesn’t pronounce most words correctly, but he’s gaining the confidence to repeat words, guess what’s coming next, and, most importantly, use them productively.
New words: Airplane, pato, leon
New realization: Little Bear recognizes his numbers up to 9 in Spanish. He can finish almost every page of the Dr. Seuss ABC book.
New productive use: luna (nuna), pelota (tota), pato, gracias (while handing something he’s finished with), MAMA and PAPI!!! FINALLY!!!
Other new milestones: He looked in my eyes when I changed his diaper. He hugged his grandmother for the first time (he’s a hug monster with me and my husband, but nobody else). He wanted to hang out with his brother and two other kids who were at the playground tonight, even though he didn’t directly play with them. He shared his toys with me even when he wasn’t done with them. He looked for Papi Bear’s approval when we were talking over FaceTime.
This week he doesn’t have school. He’ll be with Mama Bear every day. I’m going to work as much as I can with him and hopefully the following week when he starts school, he won’t have as much anxiety as he did at his old one. Fingers crossed.