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.

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Cultural Differences

Papi Bear and I are from different countries. I’m American and he’s South American. We have much in common, but our upbringings were very different and our views on childrearing often butt heads when it comes to topics such as discipline and Little Bear’s autism treatment.Screen Shot 2016-08-22 at 11.06.53 PM

Papi Bear accepts the diagnosis when we’re with the therapists and doctors. He is more eager to say his response to speech is severely deficient than I am. He is less likely to explain symptoms away than I am. He is the one who really pushed for the neuro consult to begin with. For all who see Little Bear in a clinical setting, Papi Bear is the one who accepts this reality most firmly.

Me? I accept the reality of my son having autism. I can now say it without crying. I can go to his appointments without having a panic attack when they say “autistic” and point out his deficits. I am, however, his primary caregiver and I do see differences between where he was when we started a month ago and where he is today. I also see differences between how he is when we’re alone, how he is with both parents, how he is with his brother, and how he is with therapists. He may be babbling nonstop all morning with me, but when he’s being evaluated or working in therapy, maybe one or two words will come out. He is also much more verbal with me than he is with my husband. When I lay in bed with him, he’ll touch every part of my face and whisper, “nariz…. nose…. ojos… eyes…boca… mouth,” and then wait for me to lay on my stomach and then he’ll climb on my back and fall asleep. I know a different Little Bear than the rest of the world.

Today my husband arrived home from a weekend trip to his country. We were discussing Little Bear’s progress over the past few days. He said he definitely agrees with me that Little Bear does better in the morning than he does in the afternoon/evening and that he is understanding more directions and commands. He was also very impressed that he walked across the entire house to bring him an empty apple sauce pouch and say, “Gracias,” when he gave it to him.

We discussed where we see deficits the most. I told him I see some social deficits for sure and also some minor sensory ones. He asked what I meant. I told him I notice that when he leaves his very-dark room after nap and walks into the living room, which is very bright, he will sometimes put his arm above his eyes for a few minutes until his eyes adjust to the difference in light. I also mentioned our recent trip to Tusker House at Disney World for a character meal. Both of the boys were tired, Teddy was just recovering from roseola, and the combined stress of not being 100% with high noise levels and lots of people was just too much for him to take. He freaked out and wouldn’t eat a thing. It was a very stressful experience for all of us and he pretty much had to eat in our arms in the buffet area because he would cry every time we were in the room with the noise and people.

I told my husband I had asked some moms of autistic children what they do when they go to Disney and their kids have sensory overload. One woman said, “My son wears noise-cancelling headphones and has the added bonus that he can listen to the same song over and over without bothering the people around him.” I thought that was a wonderful idea and so did all of my friends who work with autistic children or have one of their own.

My husband’s response was, “No. That’s a horrible idea. He has to learn how to deal with it. He’s not going to wear noise-cancelling headphones when he’s 20.”

To which I responded, “Maybe he will. We don’t know. When he’s 20, he’ll most likely have other coping mechanisms. For now, he’s 2 and he doesn’t know how to cope with the world around him. I want him to be comfortable in public.”

Husband doubled down. “No. He is not going to wear headphones. Just because you read something on the internet doesn’t mean it’s a good idea. We don’t even know if he’s autistic yet. They’re still testing. It still might be something else. But no matter what, we need him to learn how to be as normal as possible. He needs to figure out how to deal with it. He’s not wearing headphones ever.”

At that point I said, “But that’s the point. He’s NOT normal. He needs accommodations because he’s NOT normal. He’s autistic. And he’s two years old. He doesn’t know any other way of coping at this age. He is not normal and we can’t treat him like he is to the detriment of his mental health.”

And that’s when I left the room and silently cried alone. My son is autistic and he is disabled. He needs accommodations that make him comfortable. Would we deny a paraplegic child a wheelchair in an attempt to have him appear normal? Would we deny a deaf child a seeing eye dog in an effort to appear normal? A hard of hearing child a hearing aid? A nearsighted child glasses? Our child is no different. His father needs to understand his disability and realize that this isn’t a small learning disability that can be overcome with extra tutoring or no time limits for tests. It is something he will deal with the for rest of his life. I refuse to make my child suffer anxiety and mental anguish in the name of appearing “normal.” Besides, we’re in 2016. It’s pretty normal to wear headphones at all times in public anyway. Nobody would know he was using it as a coping mechanism. They’d just assume he’s listening to the Wiggles.