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.

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.

Testing

Today is the day. Today Little Bear goes to the hospital to have his MRI and EEG done img_3525and in a week and a half we will have our follow-up to see if he gets the full diagnosis or something completely different. It’s 7:40 right now and he’s allowed to have clear liquids until 9. We have to be at the Children’s Hospital by 11, meaning they’ll take him back close to 12:30.

Nursing school taught me that clear liquids includes Jell-o, so Little Bear is loving his Jell-o buffet breakfast this morning. I made him three different flavors, three different colors, and figure he can pig out on it until it’s time to head down to the hospital. First up is peach flavor. I filled his bowl, he ate it all. I refilled and he said clear as day, “Tank you.” He’s been saying, “Gasha” for “gracias” for a few weeks now, but I’ve never heard him even attempt “thank you.”

His therapy is going very well and every day he’s learning new schools and showing improvement. His OT is probably the most helpful, overall. She has him doing sit-ups, push-ups, fine motor exercises, learning new words. He cleans up when prompted right down to closing the bag for his therapist. I was very impressed with what I saw today versus when she started about a month ago.

He started ABA therapy two weeks ago, but missed all of last week due to Hurricane Matthew rolling through. This week he missed his Wednesday session because of Yom Kippur and today he’s missing his session because of the hospital visit. Hopefully next week will be back to normal for him.

We did have to let go his PTA. His regular PT was excellent and she was doing really well with him, but she was clear from the start that she would be sending her PTA after three or four visits. This coincided with the high holy days, so she was unable to come and we said we were fine with the PTA coming instead that week.

She came to our house and it was a nightmare. She looked unprofessional compared to the other therapists who have come through, but don’t judge a book by its cover, right? Sure, all the other in-home therapists have come with perfect hair, well-fitting scrubs, new shoes. Uncombed hair, size-too-small scrubs, and winter shoes that she’d flattened into flip flops doesn’t mean anything outright. She might be the best PTA ever.

Spoiler: She wasn’t.

One of Little Bear’s big issues is attending to his task from beginning to end. He doesn’t like to stay on anything for more than 2 or 3 minutes unless it’s eating or TV. If there’s a new person around, it’s even harder to get him to cooperate. He’ll run around like a chicken with his head cut off, trying to get you to chase him. In all other cases, the therapists have tried to redirect his behavior, even if they weren’t successful. This woman just let him go at it for the whole session. It was infuriating! And when he did sit down and show interest in the peanut ball, she stopped working with him the moment he got fussy. She never put stress on him to make him work and that’s exactly how therapy becomes useless. My boiling point was when this conversation happened:

PTA: You said you don’t like the SLP. Why don’t you like her?

Me: I feel like all she does is play with puzzles and blow bubbles and that’s not conducive to language learning. He hasn’t learned even one new word since his first session.

PTA: (not even 10 minutes later) Yeah, it looks like we’re going to need to bring puzzles and bubbles.

Me: (because I’d had it) Why do you need puzzles and bubbles for PT? I just told you I don’t want puzzles and bubbles.

So I wrote an e-mail to the owner about the issue. His wife, who is the clinical director called me back to discuss the issue. I tried not to trash her – continually referring to her as a “bad fit” – and it seems that at least one other family with a child whose problems were similar to mine were not satisfied. Now we have to wait and find a new PT. We’re not willing to change agencies and get rid of his OT, though, since she is such an asset.

Well, it’s 8:15 and we have to leave in an hour because of the rush hour traffic. Fingers crossed for a successful day with good test results.

Two Magic Words

There are a few moments that every parents holds their breath waiting for, knowing that that moment will forever change the relationship they have with their child. The first step. The first solids. The first time sleeping in their nursery. Perhaps the most eagerly awaited milestone is hearing your child say “mama” and “papa” with intention. When you have a child on the spectrum, this moment may be years off.

Little bear started talking on schedule. His first word was “all done.” He also picked up “high five” “ball” and “leche.” But no words to refer to Papi Bear or myself. We pushed him, urged him, prompted him, with no result. Our best outcome was the nonspecific “beh beh” to refer to either of us in times of separation anxiety.

Today I took Little Bear to the grocery store. He didn’t want to be in the car anymore and was getting whiney. I pulled into a spot and checked my phone for a moment.

Mama

No. I must be imagining it.

Mama!

I wasn’t. Little Bear called for mama for the first time ever.

Papi Bear said he called him Papi clearly today when we left him alone with his OT for five minutes and he wanted him to come back.

One day at a time.

Oh, and his brother got a car bed today. He called it vroom vroom.

Penciling in Life

Last week Little Bear was approved for therapy through our private insurance to add on to his Early Intervention therapy. At the moment, he has 9.5 hours a week. We’re still screen-shot-2016-09-18-at-11-25-44-pmwaiting on an eval for private speech therapy, possible OT through Early Intervention, and a possible doubling of PT through Early Intervention. All in all, he may end up with 15-18 hours a week by the time we finish scheduling everything.

Little Bear is doing extraordinarily well in his new school and every day we see him more and more eager to go to class. He cried for 15 minutes after we left him on the first day, but Papi Bear said he just goes over to his seat and sits down with his breakfast when he leaves him now. His new PT told me she observed him for 15 minutes before she started her therapy with him on his first day on Thursday. She said he is very attached to the main teacher in the classroom and he likes to hold her pants and sit in her lap during circle time. The same teacher has told me he’s the sweetest little boy ever (except for the pinching) and that she adores him, so I’m glad he’s found a teacher at school that he can find comfort in while he’s away from Mama and Papi. We’re also thrilled to walk in at the end of the day and find him running around on the playground, rather than in a classroom or watching TV.

Today was a special day. A milestone day. Today was the day Little Bear picked up a remote, held it to his ear, and said, “Hewwo? Hewwo?” And then gave it to Mama to listen. Today was the day Little Bear truly played pretend and his Mama Bear’s fears lowered down one more notch. He can play pretend. My Little Bear can play pretend!!

The fears are still there. We still worry about the future. We still worry about the present and about the things we may have done to cause his disorder. We don’t, however, feel the terror that we felt back in July. Our terror has been replaced with hope: the hope that Little Bear will have the capacity to live a productive life in society and function as someone who is simply “different.” We’re okay with him being “different.” We’re both “different” ourselves. We just don’t want him to ever feel like he’s a burden to us or his brother. That is what we want for our baby boy.

And every day that goes by fills us with more relief that that will not be his case. We’ve passed the 3 week mark since Little Bear’s urine sample was given. The geneticist said that if he had something concerning like Fragile X, we would be called in earlier than our November 1 follow-up and the tests generally take 2 weeks to get back. I don’t want to say we’re in the clear for serious genetic conditions, but the stress has definitely gone down now that we’re heading towards a month since the second test was turned in.

For now, we’re just trying to pencil in life between therapy. Deep breaths and away we go towards the prize: our son reaching his full potential and finding coping mechanisms that work for him.

Early Intervention

As Little Bear’s progress continues, our fears have slowly gone from high flame to a simmer. We’ve seen the neurologist, the geneticist, three physical therapists, two occupational therapists, a speech pathologist, and we have appointments with two ABA specialists at the end of the month. At first each new evaluation was a terrifying prospect that both Papi Bear and myself feared the night before. We knew our hopes and dreams for Little Bear would die a tiny bit more as his diagnosis was confirmed yet again.

Yet now, a month and a half after his initial visit, our fears have reduced to such a level that we’re almost happy to see new evaluations. Each evaluation he has seems to be less extreme than the previous one, showing us the obvious success that early intervention has had on our son.Screen Shot 2016-09-07 at 12.03.36 AM.png

For example, when we initially filled out his survey, we said he rarely made eye contact. This is no longer true. Little Bear doesn’t make normal eye contact by any stretch of the imagination, but he comes up to us and looks in our eyes spontaneously, always looks at us  when we’re playing with him, and he’s even begun to look for approval after completing a task. These are big milestones to our family and we’re very proud that he’s been able to make significant progress after just a few weeks of therapy and work with his parents.

His vocabulary upon diagnosis was under two dozen words, but is at least twice that now and every day he seems to add something new. He knows his shapes, his letters, and his numbers now. He can name three body parts, a few animals, and he makes his likes and dislikes known through the word “no.” This is absolutely thrilling to us as parents, since just a few short weeks ago all he would say regularly was “leche,” “ball,” and “bubble.” Now he’s actually communicating with us.

Early Intervention is so commonly ignored by parents for whatever reason. I, personally, am a huge fan of taking advantage of it. It changed the outcomes for both of my boys and has put them on a direct path to success. I urge everyone who has even the slightest fear about their children being behind in anything to have their child evaluated. There is absolutely nothing to lose and an entire world of good that can be gained.

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.