New Year, New Milestones

I have seriously slacked on updating this blog due to a number of life events that have occurred in our family. Everyone is healthy, thankfully, but real-life often complicates taking the time to sit down and write it out, so forgive my lateness in updating.

Little Bear is now about 18 months into his autism journey and he is progressing in stops and spurts. This is not a negative thing, mind you. Progress is progress. Little Bear simply internalizes his lessons and shocks the heck out of us all after a month of doing absolutely nothing.

For example, he just started saying “I want (noun)” clearly over the past month after intense pushing from his therapists. He no longer signs and does not require much prompting to do it, although he rarely says it spontaneously. That said, today we were having New Year’s Day dinner and his brother stood up to leave when he was finished with his dessert. Little Bear yelled, “BIG BEAR! EAT! Mama! Big bear! Eat!” He was tattling on his brother! Little bear was yelling at me to make his brother sit down and eat the rest of the food that was on his plate!

We have also come to realize that Little Bear adores music and being on stage. He first showed us this at a Halloween festival near our home. They had a stage set up and a DJ playing pop music. All the kids were on stage in their costumes dancing. When they came down in a conga line, I tried to get Big Bear to go in, but he refused. Little Bear, however, pushed himself into the line and followed the kids back on stage, where he danced away for a good 30 minutes, watching the other children and imitating their moves. When the police chief of the city came on stage and asked them to take a seat, he took a seat, just like all the other children. He repeated this love of dance at his school’s Christmas show. When the class finished singing the African Christmas Carol and Oh Dreidel, there was  a pause and Little Bear looked around, started clapping and yelled, “YAY!” Giving the rest of the audience permission to cheer. We are thrilled to know that he enjoys the stage and we plan on signing him up for salsa lessons as soon as he’s old enough as well as theatre classes.

He also loves to imitate cartoon characters. His favorite movie is definitely Lego Batman. When Batman reveals himself in the beginning, he goes up to the screen and says, “NUTS? Come on! Nah-nah NUTS!” (“Nuts? Come on! Let’s go nuts!”) and then dances/sings to the rest of the song. The Many Adventures of Winnie the Pooh is another favorite, as well as the live action version of The Jungle Book.

His vocabulary is growing by leaps and bounds. He does three and four word combinations to try to explain what he’s observing. He’ll look out at the daytime sky and say, “Black. Moon. Night.” Trying to explain how it’s different from the daytime sky.

Empathy has begun to emerge. Yesterday his brother fell, scraping his foot and breaking his lego castle apart. He started bawling (mainly over the legos). Little Bear went over, pat him on the head and said, “Sana sana. Sana sana.” My heart melted into a warm pool of pride.

As for a few of the difficulties…

He still isn’t completely potty trained, but he urinates in the toilet whenever we take him in and has very few accidents. He has a lot of work to do with poop. He neither holds it in nor tells us. It’s been a few weeks since he’s pooped on the toilet at all.

We finally got an appointment with neurologist number 2 on our insurance list. We are extremely unhappy with his original neurologist and his lack of interest in even opening our son’s file before appointments. We wanted to switch to another doctor in the office, but they wouldn’t let us. It took a year of calls to get an appointment with the second office our insurance offers appointments with. My husband called on Thursday to confirm the time/date of his initial appointment. The secretary informed us that the doctor was retiring and letters had been sent (we didn’t get one, although a friend whose daughter goes there did that same day). They wanted to make us wait another three and a half months. Keep in mind… This was 10 months of calling just to make the appointment. Then another 3 months of waiting for the appointment to come. The appointment is less than 3 weeks away. And they canceled it. Livid is not the word. My husband put in a complaint to the supervisor. I put in a complaint to the insurance company. Within 24 hours they were miraculously able to move us to another doctor who has an opening on the 10th. Hopefully his old neurologist can get his paperwork there in time.

And this is where we are right now. We’re on winter break from school. We’re very happy with Little Bear’s progress and the future is not nearly as uncertain and terrifying as it was a year ago at this time. All of Little Bear’s therapists seem confident that he will be one of the lucky children who grows up to be high functioning and have an independent life where autism doesn’t hinder his ability to function in society.

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Transition Meeting

Little Bear is currently in an Early Intervention program through the state. His birthday is in August and he will be turning 3, aging out of his program. He is expected to start a public school pre-K program at that point. Big Bear was in a similar program for neurotypical kids because he wasn’t speaking and has some social issues and he really blossomed when he began school. We’ve been waiting excitedly for Little Bear to reach this point.

Little Bear wants to start school desperately. His brother is in a summer camp program at a local Catholic church, which we call Solcito Camp. He calls church Solcito. I don’t know. We just roll with it. Anyway, every time we go to pick him up, Little Bear runs into the room and starts playing with the toy kitchen. Today we went in and they were having a dance party. Little Bear just started getting down. He was stomping, singing, dancing, and having an awesome time. His hardcore home schooling and therapy has helped him a great deal over the last few months, but he really does miss the atmosphere of school and being around other children.

We got to his transition meeting earlier than expected because I picked up the wrong paper from my mailbox. I thought it was at 8, but it was really at 9. For some reason they had a translator there for me, but I gave her up for another family whose translator was running late and was in desperate need of someone to help out with their twins.

Little Bear was his regular self during the evaluation. He talked a little bit, but not much. He played, used his social smile, but didn’t always follow directions. Getting him to stay on task was a challenge. Getting him to say two word phrases besides “I want” was not happening. However, within five minutes of the evaluation beginning, the psychologist and developmental specialist both said, “Look, we can’t diagnose your child. Also, we should let you know that none of this information will be shared with your medical provider unless you choose to share it, but we personally do not think your son’s final diagnosis will be ASD. We see a lot of children come through here with an ASD diagnosis and if your son is on the spectrum, he is very high functioning. We’re not saying he’s not autistic. We’re not saying he’s where he should be. We’re still filling out the forms for the autism class evaluation, but we do not expect that he will be placed in an ASD classroom. He just doesn’t fit the criteria of the other children who are placed there and he most likely wouldn’t improve as quickly as he would in other rooms.”

Papi Bear wasn’t with me for the evaluation – he had to attend a conference out of town – but when I told him over the phone later on, he was thrilled. He said I had made his entire week. Little Bear’s diagnosis has always been difficult for him to deal with because of cultural differences. It has been compounded by the fact that he usually performs better in the mornings and he only really sees him in the afternoons after he’s worn out from 6-8 hours of therapy a day. This made him feel like his child has more possibilities to reach his potential. I think Papi Bear still has trouble grasping the idea that autism doesn’t mean Rainman or rocking in the corner. I think he also carries personal fears that he may be autistic and, therefore, the cause of his son’s neurological differences.

And that’s where we are now. Our next meeting is on August 8th, four days before Little Bear’s 3rd birthday. We’ll find out what school and classroom he’ll be assigned to. Fingers crossed that he gets a full day schedule and that they let his ABA therapist go in to see him at school.

ABA

Little Bear has done very well with his current ABA therapist through Early Intervention. She has him following rules, concentrating on one task, improving his joint attention, and communicating much better than he was previously. He’s always ready to work when she comes in and it took him months to get to that point.

On May 10th, ABA therapist and I had a bit of an exchange over text message. I asked if she would be able to switch one or both of his days to the afternoons so he could attend a special needs preschool program that wouldn’t allow her to perform therapy on site since they have their own therapists. She responded saying she had 2:15PM open. We had a bit of a heated conversation in which I said that a 2:15 therapy time for a 2 year old is basically throwing away his hour because it’s right smack in the middle of his nap time. She ended by saying I was misunderstanding and this was not an obligatory change – we would be able to keep everything as is or, if I chose, she could find me a different therapist with a more open schedule. I said no, I wanted to keep everything as it was since he hasn’t been enrolled yet anyway and we’d figure it out when the time came.

Today, I received a call from ABA Company saying she would no longer be Little Bear’s therapist because she’s a supervisor and her schedule no longer permits her to see patients. I flipped out. I really, truly flipped out. I felt bad for the woman who called me. She transferred me pretty quickly to a conference call with the owner and the therapist.

First, the therapist tried to gaslight me and say she said that we had discussed this in May. I said no, I have the text in front of me, and I read it out loud. I said, “My son has two months left until transition. That is literally how long it takes for him to become used to a new therapist. You gave us absolutely no indication or warning that you were leaving him. You’ve cancelled three appointments in the past month and have only made up two. We’ve been extremely understanding and extremely accommodating to your schedule and now you can’t even do Little Bear the favor of finishing out his transition?”

ABA therapist continued to cite her schedule, her schedule, her schedule, but schedules are not made overnight. I’m receiving a call on a Thursday saying that she’s not available, effective Monday. I waited three months for Little Bear to get these hours initially, but there are suddenly two therapists for me to choose from for him to see? No, this is lack of professionalism at its worst.

After listening to them try to say she was acting in an appropriate manner and that my child will continue to develop, I finally said I just had to hang up. They were not listening to my concerns. They were explaining them away, telling me how wonderfully he’d do, but he’s autistic. And two. And does horribly with transitions. And so they’re transitioning him to a new ABA therapist exactly at the point when he started getting past his issues from the tubes falling out two months ago and then she’s going to leave him so he can transition into public school in August. It’s complete heartless bullshit that puts my Little Bear last and does not take his progress and well-being into consideration. And I told them as such. They offered to have ABA therapist attend two or three sessions with New ABA therapist. I literally laughed and said, “Are you serious? I don’t want her in my house again. She’s hurting my child’s progress and has behaved in the most unprofessional manner possible. She told me two weeks ago that she would continue with him and now she’s leaving him with less than 2 working days notice. No, I do not want her anywhere near my son. She shouldn’t be a supervisor if these are the traits she’s going to pass down to other therapists.”

I cried. I cried buckets for Little Bear. He was doing so well and now he’s going to regress. I just got him approved for ABA therapy through Medicaid and confirmed a very difficult schedule for him starting next week. Now instead of having three five hour days and two other days to schedule OT, PT, and SLP on, I’m stuck with two 4.5 hour days and three 2 hour days with his other therapists upset because they’ve been pushed out of their normal slots.

Overall, I’m just upset that an agency that deals exclusively with autistic children would have so little concern with giving adequate time for transitions or making sure children who are close to aging out aren’t put under the stress of two changes in under 2 months.

New ABA therapist comes tomorrow afternoon. The owner called again in the evening and kept telling me how great he’s going to do.

He’s not going to do great. But at least I can do it in the afternoon and help his other therapists out by opening up a prime morning hour.