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.

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.

Fancy Child Care Center

Fancy Child Care Center* kicked Little Bear out for biting.

Fancy Child Care Center put him on a two week probation for biting in December of 2016.

Little Bear did not bite from the day the probation started until the first week of March.

Fancy Child Care Center’s owner thinks my son needs a “special school” and “one-on-one attention.”

Little Bear’s therapists and neurologist thinks he needs a social atmosphere and that he is thriving with other kids.

Fancy Child Care Center told me that the owner’s 23 years of experience was more valid than that of his ABA, OT, PT, SLP, and Neurologist.

Fancy Child Care Center said Little Bear bit a child on Thursday at 10:15. Little Bear had both his ABA therapist and his new SLP there for an evaluation at 10:00.

Fancy Child Care Center has been reported to licensing for not providing me with a report when my child was bitten. They will most likely be cited because they didn’t ask me to sign any of his incident reports since November.

Fancy Child Care Center did not feed my son adequately, which led to his behaviors.

Fancy Child Care Center is classist and didn’t want a non-perfect child ruining its perfect reputation.

Fancy Child Care Center will not define my son.

Fancy Child Care Center will not define me as a mother.

Fancy Child Care Center will make me smarter about who I trust my son with in the future.

Fancy Child Care Center can kiss my ass.

 

*not the real name.

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.

Rejection

When I was a child, I was not very popular and I usually only had one close friend at a time. There was one point in my life when I had exactly one friend and I relied very heavily on her for emotional support. We did everything together in school, had sleepovers on the weekends, and occasionally played over each other’s houses. One day we were in 8th grade, sitting at the lunch table, talking like always, and she looked a little nervous. She looked away and said, “M… I think I’m going to go sit with some other friends today.” I said, “Um… okay?” And she left me there with the drawings
we were working on. She didn’t invite me to come with her. That was the first time I felt truly rejected by a person I trusted.

Little Bear started Physical Therapy in February of this year. He was an itty bitty thing, delayed in walking, delayed in crawling, delayed in everything gross-motor related. His muscle tone was low and balance has always been a challenge for him. We went to Early Intervention and they gave him 30 minutes of PT and 60 minutes of feeding therapy. His first therapist came twice and basically said, “Oh, he’s doing great. We’re going to put him on a maintenance schedule.” Her maintenance schedule was coming once a month. He did not improve in that time, although her cheery demeanor made me think he was almost normal.

By April, she was already dodging my calls and cancelling sessions. I called up my coordinator and she was livid that she had changed his therapy hours, let alone decided he was “cured.” She was quickly replaced and the new therapist was wonderful. It was the first time we’d been left so suddenly, so the sting was forgotten once our excellent new therapist started with our little bear.

July rolled around and the events of this blog occurred. Little Bear received his diagnosis and we began the journey into therapist land. We received an agency recommendation from a friend whose toddler had severe delays related to being a micropreemie and spending two years with breathing help. We knew any recommendation from her would have to be the best of the best.The OT was excellent. From the very first day, Little Bear was interested in her and loved being in her company. His second PT was equally enjoyable and suddenly we had about ten hours of therapy a week, making Little Bear’s progress grow in leaps and bounds. As parents, we were so proud of his progress and were beginning to see a light at the end of this dark, endless tunnel.

October rolled around and the PT told us that she was going to begin sending her PTA to do Little Bear’s therapy and she’d come and do progress checks. We were fine with it, since all of our therapists up until that point had been excellent and we felt secure that the PTA would be the same. We planned a Saturday visit after a weather emergency in the area cancelled our first appointment.

The PTA came to our house wearing ill-fitting scrubs and shoes that were meant to be regular shoes, but she had stomped down into flip-flops. Her hair wasn’t completely combed and she gave me a feeling that made me uncomfortable with her around my child. Papi Bear was also there and he raised an eyebrow when she came in. Papi Bear goes on first impressions and I knew this woman wo
uld have to be a brilliant therapist in order for him to allow her to come back to our home.

She was not a brilliant therapist. She essentially just chased Little Bear around for 60 minutes, repeating over and over again how cute he was, and at one point put him in her lap and kissed him. That was the last straw for us. When we closed the door behind her, my husband literally said, “She is never coming near our son again.”

We told the agency we were not happy with her and we’d like a different PTA. The PT responded that she was off for the Jewish holidays, but she’d take Little Bear back on as soon as she was back and she’d find a suitable PTA as a replacement. Two weeks passed… And by two weeks, I mean two weeks after Rosh Hashanah had ended. We received no update and no new schedule. I called up the owner and asked when we would be starting again. She called the PT and she said she didn’t have time to take Teddy on and she was dropping him. We were devastated. Two hours a week of therapy gone. The company told us they would find someone else, but here we are two months later without a replacement. I’ve started looking on my own at this point.
We continued on their wait list for an SLP. We finally got the call in November. She came on a Saturday morning and seemed very friendly and professional. We went into Little Bear’s room and I sent Papi Bear and Brother Bear to get lunch so there would be no distractions. Little Bear is never in the mood to be evaluated, but he was even less so that morning. He wouldn’t do anything she said and he kept biting me. She said she understood – it was his first time meeting her and he was understandably distracted. He was not happy and not cooperative. He just wanted to play peekaboo on the bed and roll his trucks around. His interest in her test was nil.

After she finished the evaluation, she told me her availability and it worked perfectly with ours, so I was very happy to hear it. She shook my hand and said she looked forward to planning our sessions soon. She would not answer any questions about where she saw him developmentally. I closed the door expecting her to call me within a few days to get started.
She never called.

The agency called more than 2 weeks later and said she would not be taking Little Bear on because he was “aggressive.” She was not comfortable woscreen-shot-2016-12-02-at-8-11-29-pmrking with a child who scratches, bites, and cries when frustrated. My immediate response was, “Then why on earth would she even bother to waste my time and money evaluating my autistic toddler?” A neurotypical toddler bites, scratches, and cries when frustrated, so I would imagine a “professional” would expect a child with an ASD diagnosis to have these traits as well. On top her label, this chart shows where she ranked my little bear. 15 months old. My Little Bear has a vocabulary of around 100-150 words, even though he’s not a big talker. He used a three word sentence in front her repeatedly (I see you) and he knew all his colors, shapes, numbers, and letters with her.

The other rejections bothered me, but this one broke me. My son was labeled aggressive. My son was labeled as being half of his developmental age. Were his other therapists lying to me? The agency told me she had spoken with his OT before taking this decision, so I assumed they may be. I showed the evaluation to every therapist he has and they all disagreed completely with what it said. It made me feel a bit better, but now I just felt my child was the victim of discrimination rather than having been misdiagnosed. I made sure her agency knew I felt this was a very discriminatory practice. As his ABA therapist said, “Any therapist who takes on a child with ASD should expect to be bit, scratched, spit on, and screamed at. It comes with the territory.”

Little Bear has also been in a new daycare since late August. He loves it there and we love do, too. It’s more money than we’d like to spend, but we think his socialization and education are worth the investment. He’s in the 2-2.5 year old room with 20 other kids and 3 teachers. He seems happy there.

Over the past month, there have been a number of biting incidents. We’ve realized that Little Bear knows that biting gets attention and he’s been taking full advantage. We’ve attempted to address it with cheweys and other actions, but nothing has worked so far. Usually he comes home with a note saying he’s bit a child at least one of the three days a week he goes to school.

On Wednesday they informed us that they would be putting him on probation. He has one week to stop or he’s going to be kicked out of the school. They told this to Papi Bear – originally saying that would be his final week, but Papi Bear was able to negotiate one last try. The owner claims 4 families have already left because of him. I don’t know how much I   believe that, though. It’s a 2 year old classroom and unless he’s biting one child over and over again – which they said he isn’t – then I don’t understand what parent in their right mind would pull their child from an excellent school based on one or two bites. Both of my children have been bitten in school and my thought is, “Well, they’re in a room full of  2 year olds and 2 year olds bite.”

Little Bear being threatened to be thrown out really broke me emotionally. I cried buckets when Papi Bear told me. I want Little Bear to stay there, but I don’t want to be in a perpetual state of fear that he’ll be expelled. I sat and thought on it a long time. His OT recommended special daycares for ASD children. One is 30 minutes away going in the same direction as traffic. The other is $900 a month for 3 days a week plus a $600 registration/supplies fee. Neither is within our means. Today his ABA therapist and I came up with a possible solution. Once he has been added to our private insurance, we’ll start him on 20-30 hours of ABA a week. We’re going to ask the school to put him back on the wait list to give him a few months to work on his problems. When he goes back the ABA therapist will be with him in the classroom and prevent him from biting. We’ll also start working with picture cards for him and see how he does with them.

I feel confident that he will improve. We just need to get the right team together that believes in him.

New School!

Little Bear started at his fancy new school that costs a lot more than his not-so-fancy previous school. While we loved the one year old teacher, we always despised the two year old teacher and with a special needs kid and the good three year old teacher gone, the decision was made for us. We were done; we were ready to move on.

Little Bear’s new school is a breath of fresh air. The reports are more detailed, the teachers are more professional, the facilities are incredibly well-maintained. Not to say his old school was badly maintained – it was just an older building and it was showing its age, while this one is a new building and also shows its age. The playground at this school looks like a brand new city playground and impressed Big Bear so much that he labeled it “No Little Bear cole. Big Bear cole.”

His teacher said he doesn’t specifically play with other children, but he plays near them and rarely goes off into a corner on his own to do something. She said it seems that he likes being around others, which is very different from how he was perceived by his previous teachers. As his parents, we were thrilled to hear that he’s no longer avoiding contact with other children. Honestly, that’s all we want for him from this school: socialization. And we may be biased, but we both think we’re already seeing him improve a little bit, even though it’s only been two days. When we pick him up, he’s usually babbling to himself with new words, rather than quietly playing alone and when we’re at home, he’s usually in a much better mood for dinner than he was when he was at the other school. We decided we’re going to wait and ask his PT what she thinks in another week or two, since she’s seen him at both schools.

Little Bear has been talking a lot more lately, which has been easing a lot of the anxiety Papi Bear and I have felt. He calls Papi Bear “beh-beh” consistently and he’s started to say “Mama” every once in a while. He always asks for leche and agua by name, his favorite toys have names, and he tries to label things he doesn’t have a word for yet. For example, when we did his 2 year old photos last week, he called the balloons “bubbles.” Before he would have just grabbed at them and made no attempt to associate a word or sound with the object.

We’re going to see about changing his SLP soon. Although we love her as a person, but we don’t feel he’s getting anything out of the sessions. All we do is sit there and do puzzles and blow bubbles, which does not make for productive therapy. He learned the word bubble on his first day, which impressed us since his speech had completely stalled. He has yet to repeat that early success, though. His PT has taught him more communication skills than his SLP and I have to go to the hospital for the SLP while the PT comes directly to the house. The PT gets down on the floor and offers him things and makes him say “mas” or “more” or “mine” before she’ll give it to him, even if he gets uncomfortable with it. She does a deep massage on his arms and legs to calm him before she puts stress on him and she does it again once he’s done. Even though she doesn’t speak Spanish fluently, she’s made efforts to learn the Spanish children’s song that we use to calm him down. He trusts her, he enjoys her, and she challenges him. I wish we could have a half hour with her every day, rather than once a week, but unfortunately she doesn’t accept our insurance so we only get what’s provided through Early Intervention.

We have a few more evaluations coming up this week. OT is on Thursday and then he has another PT eval on Friday through our insurance. We’re trying to get as many hours as we can this year so he is prepared for regular public school preschool next year. Everyone has told us they see promise in him, so we’re still holding out hope that he can integrate and be in the classroom next to his brother. We’re keeping our fingers, toes, and everything else crossed. We’re hoping this new school is just what he needs to help him learn how to be with other kids.