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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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.

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.

Tubes

When Little Bear was born, he failed his newborn hearing test. We tested him three more times and he failed, failed, and failed again. At first, we feared he was deaf. He wasn’t looking when we called his name and he only looked towards noises if they were extremely loud. We didn’t realize at the time that he wasn’t neurotypical, with the added issue of conductive hearing loss. The conductive hearing loss was confirmed by an audiologist and his ENT placed ear tubes last March.

The ear tubes helped him reach his gross motor milestones. Within two weeks of theirScreen Shot 2017-03-18 at 10.04.34 PM placement, he began to walk regularly, at 19 months. We waited anxiously for the speaking to come, but it never did. A few new words came out here and there, but no big blossom like the ENT had promise would happen. It was soon afterwards that we took Little Bear in for a neuro consult and he received his initial PDD diagnosis.

The ear tubes stayed in place until about 3 weeks ago. Around the time the right one fell out, he started to bite again. Within a week, he had an ear infection and the pediatrician said the fluid was back. That same week he bit two days in a row and he was booted from daycare. His behavior became more short-tempered and his attention span dropped. He just wasn’t himself once the tubes came out.

We went to the audiologist on Wednesday for a hearing test. He failed. We saw the ENT for his follow-up on Friday. He said the left tube was out, too. Both ears had fluid. That, combined with behavioral changes and the ear infection meant we were headed straight for new tubes. Sigh.

Little Bear loved the ENT, though. He followed him into another exam room and yelled, “BYE BYE!” to him and, “Abrazos!”

Meanwhile, I begged and pleaded with the scheduler to try to bump him up as soon as possible so he doesn’t get kicked out of school.