Strike 2

Little Bear got kicked out of Fancy Religious Child Care Center on Thursday.

No shock there, but Papi Bear took it very hard. He was pretty messed up about it all day.

Special Needs Child Care center will be able to accommodate us the second week of June for their summer program. I have to call back on Monday when the director returns to see where he is on the wait list for the regular program.

I have to admit there were some tears when I explained how much it hurt that Little Bear wouldn’t have friends anymore. Maybe that moved us up. Fingers crossed.

Until then… Little Bear Home School goes into session on Monday at 7AM.

Semantics

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Today a friend I knew when I was in grad school made a post on facebook during a trip to the local fair asking something along the lines of “is it normal for 5 and 6 year olds to have pacifiers and ride in strollers now?” This friend has always had a penchant for the sarcastic and lives in a heavily hispanic area despite being a white man, so it was quite obvious that his comment was saying, “Latinos, you need to get your kids up and walking and not give them pacifiers.”

My children are Latino. My 4 year old rides in a stroller when we go to theme parks for safety reasons.

I decided not to play into the racism of the comment and instead mentioned that many children are special needs and require sensory stimulation in crowds and need to be in strollers for their own safety or they may simply be disabled. A friend of his responded, “Their kids will end up gap toothed and having weak legs.”

The conversation moved towards “well, there must have been a lot of kids with autism there!” My response, “1:42 boys have it. My son is autistic. So was Thomas Jefferson.” To which gap-tooth-weak-leg woman said, I kid you not, that *I* was being ableist for calling my child autistic.

I have heard the idea of “autistic” being ableist before. I have heard the arguments of  it not defining the child. I have heard them and as a mother of a child with this disability and as a linguist, I wholeheartedly disagree. I respect the desire of people who want to be referred to as “having autism” and will always follow their leads (or that of the parent in the case of young children), but I will not be told by the mother of neurotypical children how I should refer to my child who is on the spectrum. Take a seat. Pull out your suitcase. Unpack for a minute. I know I had to before writing this post.

If given a choice of terms, I would say my son does not have autism. To me, you have diseases. He didn’t acquire autism when someone sneezed on him. When he was born, he was hard of hearing. He was not “without hearing.” We don’t change the morphology of any other disability-related word to make it less “defining.” Why are we afraid to define our children or, in adult situations, ourselves, as autistic? Why can’t we embrace it as a trait rather than an affliction to be “had”?

My son was born with autism. It may not be in his DNA as far as the geneticist can see, but his tendencies were visible soon after birth. Autism is part of him. He doesn’t have it any more than he has latino heritage or white skin. He is latino. He is white. He is autistic. No, it doesn’t define him, but it certainly makes up a large part of his world view and to take that away from him and isolate it as a sort of illness is offensive to me as his mother. Also, I feel like saying he “has autism” gives the false impression that it’s an issue to be cured. He doesn’t need curing. He may need therapy to help him navigate the world, but he certainly doesn’t need a “cure” for his autism. As a very staunch pro-science mother, I also feel this term plays a bit too much into the woo ideas of it being curable through pseudoscience.

I am certain that as Little Bear grows autism will be an important part of his identity.  Every part of his identity deserves an adjective. He came to us with both a full head of hair, light skin, and autism. Calling him brown-haired, light skinned, and autistic are just naming three aspects of his being that make him my beautiful, special little man.

If he decides that he feels differently as he matures, I’ll change my way of referring to him, but for now, he is my autistic son Little Bear. If the person has any background in medicine, I may say he’s on the spectrum. You will never hear me introduce him as “my child with autism” unless the day comes when he says that’s what he wants.

So the ableists who want to call out the mom of an autistic child for defending her child and his culture… they need to take a goddamn seat and check their privilege while not defining my child according to what they feel defines him and doesn’t. Autism defines my child. Latino defines my child. South American defines my child. North American defines my child. Bilingual defines my child. Adorable defines my child. Just as a word can have many definitions, so can a child. Autistic is just one of the many listed under the dictionary entry of Little Bear.

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

Look, Mommy! It’s Little Bear!

We were running around the playground playing monster. Mama Bear being chased by Little Bear and Big Bear, although Little Bear inevitably ended up behind and the chased. Lots of laughs and giggling, but then Little Bear tired of the game and decided to walk around and play alone, as he often does.

Screen Shot 2017-04-08 at 1.05.59 PM“That’s Little Bear!” I thought I heard a voice yelling.

Nah, it must be another Little Bear.

But I heard it again and again. And a mother confirming her daughter’s comments.

There was a little girl on the playground who knew Little Bear from Fancy Child Care Center. I introduced myself as his mother and talked to the child’s mother for ten or fifteen minutes. I apologized for my son’s disinterest in her daughter and let her know that he had ASD. She said she understood, although it was quite apparent from later comments that she didn’t. She revealed to me that her daughter had been one of his biting victims, although, seeing Little Bear’s delays, she didn’t seem especially upset by it. She brushed it off as, “She came home saying, ‘Little Bear was mean to me!’ and I told her that I know she’s been mean, too, and so have her friends.”

I explained about the ear tubes and their effect on his behavior. She asked who his ENT was because her daughter needed them. I gave her his name and information and she said she’d heard wonderful things about him. I told her how the fluid had affected his balance so profoundly as a baby that he didn’t walk until a week after they were placed. They were life-changing for him.

Then came the unsolicited advice and excuses, as it always does in these possible-friends situations. I expanded on his delays and she said she had read that children usually focus on one skill at a time, so maybe he was focussing on his gross motor skills rather than his speaking and social skills. She adjusted the amber bracelet on her daughter’s wrist as she explained this alternative fact mined from Google.

I didn’t want another mother to hate me and my child for his disability, so I, “oh, really?”ed while willing my eyes not to roll. Since I didn’t let them roll, I had to also try to fight back the tears that want to escape when I have to make the mother of a neurotypical child understand that my child is not neurotypical and will almost certainly never be neurotypical.

Her daughter tried to play with Little Bear. He would follow her when she ran, but he didn’t know how to interact with her. He just didn’t know what to do and it breaks my heart all over again.

But… in other news… today he said, “There you go” multiple times in socially appropriate situations. Also, he and his brother did an excellent job of taking turns playing a game on the ipad.

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.

Waiting Game

The waiting game has begun. Little Bear did fine on his first day back to school. He was throwing toys, but he didn’t bite, pinch, or scratch anybody. I picked him up at 11:30 before naptime and he was exhausted. He slept from 12 until his brother woke him up at 3. I was really proud of his progress and held onto the hope that he’d make it through probation.

At the same time, I did still visit Special Needs Child Care Center to see what our options are. I have to admit, I almost cried more than once. Not because Little Bear is special needs, but because he was doing so well at Fancy Child Care Center and I felt like because his ear tubes fell out, they robbed him of a chance at having a normal school experience. Every time I mentioned the school’s response, my voice shook and the director would reassure me that biting is developmentally expected from even neurotypical two year olds and the school was out of line. They actually took their name and information to check if they claim to be ASD-inclusive so that licensing can investigate whether they did, in fact, make accommodations for Little Bear.

Special Needs Child Care Center is what Little Bear needs right now. I know it in my heart. I just need to get Papi Bear on board and that’s hard when he comes from another country and still doesn’t tell people what our son’s diagnosis is. I have no problem saying it… It’s completely obvious when you meet him and not saying the words doesn’t fool anyone. It just makes us look clueless.

This center is opening a new room later this month, but it’s already full. I asked to be put on the wait list. What else can I do? Cross my fingers and hope for the best.

Today was a failure. Three therapists had scheduled for this morning, so I’d cancelled his ENT follow-up since his therapy was so important. Two of them forgot they had put their Monday sessions on Thursday and the other one switched to the afternoon. I went to pick up Little Bear while she was there. She said he bit someone on the playground and he’s been doing better, but not the same as before. She’s wondering if maybe he just associates the school with bad behavior at this point. She pushed me towards home/special needs daycare. A short text conversation with his ABA therapist seemed to go in the same direction.

Now if only one of the special needs schools actually had a spot for him before August, that would be awesome.

To close out a long day, we went to Golden Corral to use my free birthday meal before it expires tomorrow. Little Bear had a meltdown when I gave him stuff he likes but doesn’t usually eat there. At one point I was getting his food and he was back at the table screaming. A stranger said to me, “Wow, that poor baby keeps screaming. I hope he’s okay.” Yeah, that’d be my kid. Thanks, though. As soon as he had a bowl of mac the size of his head, he was good to go.

What a week.

Ear Tubes

Little Bear got his shiny new ear tubes put in yesterday morning. We were up bright and early, before the sun, and before Little Bear knew what hit him. We got to the hospital, went through registration and hung out in the pre-op room for a good hour, watching cartoons, playing on the ipad, and taking trips around the floor in their wagon. He started to get antsy towards the end – mainly because he realized I had a muffin tucked away in my purse, but luckily the CRNA came in with something to calm him down. When he was starting to feel the effects, they pulled out a phone, put on Baby Shark for him, and started to wheel him away. He was halfway down the hall before he realized I wasn’t with him.

The surgery itself was about 30 minutes from when they took him in to when they called me to recovery. Little Bear licked a popsicle, drank a cup of juice, and waited to be cleared. Little Bear was increasingly insistent that he get up and move, but he was still really woozy from the anesthesia. They said we could leave without seeing the doctor and that I could call later on for any information that wasn’t on the papers. This wasn’t our first rodeo, so I wasn’t too concerned.

When we got home, the improvement was immediate. Little Bear was listening. He was babbling. He was saying words. He still was far from where he was before the tubes fell out, but there was definite improvement. I put him down for a nap and when it became clear that he wasn’t going to take one, I went in and he said, “Hiiiii Mama. Hiiiii.” He’s never done that before. Usually he just says bye bye, but socially too late. Seeing him give  a social greeting at the correct moment, made me feel wonderful. He said peepee and caca when he was practicing on the potty. He followed simple directions again. I started to get hopeful.

Then I talked to Papi Bear, who had spent his morning in a meeting with Fancy Religious Child Care Center. He’s on probation for a week, starting on Wednesday. Papi Bear and I had already decided that we’d pull him after next week as it is, but this confirmed our feelings. Apparently Little Bear was biting his teacher and it hadn’t been reported to us previously. They suggested we look at special needs schools.
I think we’ve arrived to the point where that’s where we’re headed.

Papi Bear and I had a long conversation about it last night. He’s afraid to put Little Bear into a school where kids may be behind him. I had to make him realize that Little Bear is behind. Almost a full year at this point. He wanted to make comparisons with his older brother, who has an IEP right now at age 4. I showed him videos of Big Bear when he was 2.5. That’s when it hit him. That’s when he realized our son is severely delayed. At this age, Big Bear wasn’t saying full sentences, but we have one where we went to the zoo, and he pulls my husband over to the camels and says, “Mira! Camel on the ceiling! C C C!” Little Bear occasionally pulls us towards things, but not with the same eagerness and awe that Big Bear did at the same age.

Little Bear has improved since his tubes went in. He has only bitten me when he’s cranky from being hungry or just waking up. He’s still hitting. He actually pounded his brother over the head repeatedly with a small plastic baby ball today because his brother took his soccer ball. Of course this happened in the middle of a store. That I was doing a mystery shop at. Because that’s just how it goes when you’re the mom of two toddlers, one of them special needs.

Little Bear has been speaking more, singing again, daring to say new words, and dancing along with all his favorite videos on PinkFong. He speaks louder and more clearly. When I repeat one of his approximations in the correct form, he tries to correct himself. It’s an improvement. It’s a step towards where he was a month ago.

At the same time, I’m not sure how to handle school. He’s on probation already. They suggested trying maybe just the mornings for now, but he’s in school mainly because I’m teaching a night class on Mondays and Wednesdays until the first week of May. After that, I can pick him up without any problem and have him home before nap time.

I called every special needs school in the area today. None of them have space for him. One has a long shot space for him in the third week of April. They’re opening a class in his age group, but it’s already fully pre-registereScreen Shot 2017-04-04 at 10.43.05 PMd. He’s on the wait list. If you’re the wishing on a star type, please ask the stars to give him an extra push of luck to get in. I’m touring the school tomorrow and preparing for the emotional rollercoaster of acceptance that will come along with it.

Papi Bear and I have to decide tonight whether he’s going back to school tomorrow. He’s done so well the past two days. I see improvement and I’m absolutely terrified that it will go down the drain if we send him back to school. The special needs schools are not a problem, since he’ll almost certainly transition to one in August anyway.

We have a long discussion ahead of us tonight.

Little Bear… I hope whatever we choose is the best option for you. Always know we’re doing our best to give you the best possible outcome in life. We love you.