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.

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.

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.

Sensory

At every appointment, assessment, doctor’s visit we’ve had, one of the questions thrown into the pile is inevitably, “Does Little Bear have any sensory problems? For example, is he bothered by loud noises or does he find clothing tags especially bothersome?” Both Papi Bear and I always answered quickly, “No, we’re lucky. He’s completely average in that sense. Once in a while when he’s really stressed and really tired, crowds and noises will bother him or he’ll cover his eyes if there is a sudden change of light, but in general, he’s completely fine.”

Little Bear does, however, have a tendency to bite me. Not bite everyone – just Mama. Okay, that’s a lie. He also uses his teeth as a weapon against his brother, but in all fairness, he’s never bit his brother when he hasn’t deserved it. When he’s with me, however, it’s just something he does on occasion. Sometimes he does it when he’s hungry or tired, but other times it just seems like he’s doing it just because. We’ve been to redirect the biting, but now it’s morphed into pinching at the same, or even higher, rates to the point that sometimes we just don’t know what to do with him.

His PT told us that she suspected that he was doing it for sensory reasons. His OT agreed. Yesterday he began therapy with his ABA specialist and she specifically asked me about the pinching/and biting: how often, why, who, etc. I told her at times it seemed like hunger/sleep/sibling rivalry, but at other times we really had no idea why he was doing it or how to handle it, and I expressed the suspicions that his other therapists had suggested. She confirmed that she, too, would consider it to be a sensory issue before behavioral and recommended we buy chewy sticks and stress balls for him.

Here, amazon. Take my money. Make my son not pinch me. Please.

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.