School Assignment

Yesterday was D-Day. We received Little Bear’s school assignment. Papi Bear and I were nervous, almost as though this were a decision as to whether or not our baby was going to an Ivy League school. First, they reviewed his assessment. We agreed with everything stated. Then we both started thinking, “Oh wait. Did we make him sound too good? Maybe they won’t even consider him for school. Crap. We need to make him sound worse! He needs to be in full day preschool with an IEP!”

FullSizeRender 3Next came his medical history. Then came his speech history. Then came his physical therapy. It was almost an hour of going through who exactly Little Bear was and what exactly his deficits were.

Then came the moment where they explained the different programs.

“One of the programs your son tested for was the ASD program. Your son has a social smile, attempted to engage strangers, enjoys playing simple games, and has developing joint attention. He also has over 200 words. Because of his social and verbal abilities, your child does not fit the school board’s criteria of ASD. Keep in mind this is not a medical diagnosis and is simply the criteria of the school board. It will not affect any services your child is currently receiving.”

I could feel Papi Bear breathe a sigh of relief. This trip has been an even bumpier ride for him than it has been for me. He only sees Little Bear at night and on the weekends, when he’s least structured and most likely to act out. His culture is also not one that takes the bull by the horns when it comes to dealing with special needs. He hasn’t told many people about Little Bear outside of his immediate family. This gave him hope that his son was simply not that social – just like he was as a young child.

Now we were sweating again. Did he place at all? He must have. He must have placed somewhere. We thought he was at a lower level than his brother at his age. He was, wasn’t he?

“Little Bear has been assigned to the Intensive Full Day program at Big Boy Elementary School.”

That’s Big Bear’s school! Our boys were now in the same school! Thank goodness! We were terrified that we’d be facing two buses, two schools, two pickups, two sets of events, etc.

I had originally requested that Little Bear be in the same class with his brother, but his brother is in the larger class size, so it’s not possible. They’ll be right next door to each other, though, and they have recess and playground together. I’m okay with that.

And that’s where we are. Little Bear is going to full day preschool at the end of the month in a small class with other kids that have similar developmental levels. He was not deemed high enough need for a special needs school, which means his ABA, OT, PT, and SLP have brought him a long way from where he was in March.

More than once I’ve considered calling Fancy Preschool and telling them, “Guess what, Fancy Preschool director. The school board says my child does not need a special school and is perfectly capable of being in a regular classroom as long as there’s a smaller class size and he has a little more help.”

Little Bear celebrates his third birthday this weekend. We’re taking him to Disney to celebrate. He doesn’t really care much, but his brother has been talking about it non-stop. Fun times this weekend for the Bear family!

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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.

One Year Follow-Up

Little Bear was diagnosed with PDD-NOS in July of 2016. It was a devastating day for our family and I was overcome by a range of feelings ranging from fear to desperation to anger, culminating in an anxiety attack that I thought would overwhelm my entire being.  There is no way to easily describe how it feels to have your child’s future slip through your fingers like grains of sand, becoming indistinguishable from its previous self as it blends into the endless beach that makes up the Autism spectrum.

This past year has been filled with a number of ups and downs, many of which I’ve written about in this blog. We’ve gone from an almost-completely non-verbal 18 month old who was just starting to walk to a speaking child with a large vocabulary, but difficulties in sentence formation and word combinations. He can run, squat, and is trying to jump, even though he’s not quite there yet. A year ago he didn’t make any eye contact unless you were playing a game and he didn’t respond to his name. Now he makes eye contact most of the time, has developed joint attention, and he answers to his name most of the time. He’s a nice child and we’re very proud of his progress.

There have been ups and downs with providers. Finding a good support system of therapists is not an easy task. We found an excellent OT right away, but everyone else has been rough. We’re starting to settle in. We’ll see what happens in August when school starts and everything gets shaken up, but for now the therapy is settled and to our satisfaction.

Then there’s what should be the key component: the neurologist. At our second appointment in October, he went over the results of Little Bear’s MRI/EEG. He said Little Bear had a bright spot in the area where all of his symptoms were located. That, combined with his unremarkable genetic testing results, made him tell us that there was a very good chance that he actually had delayed myelination rather than ASD. He said, “Look. I’m going to give you the ASD diagnosis because you need it to get services. But honestly, I don’t think your son is autistic. We’ll know more in a year after you repeat the MRI.”

Days passed. Weeks passed. Months passed. Goals were made, goals were reached. Milestones were hit. Progress was achieved. We were very proud of our son and felt confident going into his MRI earlier this month.

I held his little hand while they burritoed him up for the IV. I stroked his hair as he fought the sedation. I rocked him and held him when he came out and tried to get him to eat or drink something so we could go home. When he was finally cleared for home, we had a weeklong waiting game in which we would wait patiently for his appointment so we would receive hopefully-good news from his neurologist.

The day of the appointment came. We went in, nervous for the results that would potentially be as life-changing for us as the diagnosis he received a year prior. We felt confident, though. We knew our Little Bear was slowly opening up to us more and more. We were sure that good news would come from this meeting.

We entered the room and the neurologist asked us when we were going to do the MRI. We looked at each other, confused.

“We did the MRI last week.”

“Where did you do it? It’s not in the system.”

“We did it at Hospital Where Big Bear Was Born.”

“Why didn’t you do it here at Big Children’s Hospital?”

“Because they called us less than a week before and told us that they no longer accepted our insurance. Then they called us 2 days after and asked why we didn’t come to our appointment and said they did, in fact, accept our insurance now.”

Dr. Neurologist looked up the MRI results on his computer and spent at most 1 minute reading them.

“Well, his MRI came back as normal. It says everything is unremarkable. The EEG shows improvement. It’s a much faster reaction time.”

Papi Bear and I start getting excited. Smiles abound. Holding each other’s hands a little tighter. This was incredible news!

Dr. Neurologist kept talking and saying, “Yeah, so nothing really interesting.” We were stunned. What? Nothing interesting? You literally just told us that our son most likely had delayed myelination. This is incredible news! We asked about this.

“Oh no, you just didn’t understand what I said last time. I never said your son might have delayed myelination. Your son is autistic. You need to accept that. It’s obvious.”

“Dr. Neurologist, you told us it might be delayed myelination at two appointments. You gave us in-depth descriptions of why. You told us, ‘I’m giving him an ASD diagnosis, but he might not have the same one in a year or two.’ This was the reason you ordered the MRI again.”

“Again, you misunderstood what I said. I never said that he wasn’t autistic or that it was delayed myelination. That’s something completely unrelated. Also, even though this came back as unremarkable, it was done at a different hospital and it was read by a different tech. There is room for error. You need to accept the results. There are studies being done related to genes, but when you have a gene that is multiplied or is irregular, there are currently no therapies to change it.”

I stopped him right there. “What are you talking about?”

“I’m talking about how autism is genetic and you can’t do anything about it.”

“Our son’s genetic screening came back normal. There were no markers for autism.”

My god if this man didn’t decide to do a 5 second diagnostic exam of my bored 2 year old RIGHT THEN AND THERE. Yep. He sure as hell did. He pulled out the diagnostic criteria for ASD and started asking “told you so” tone questions.

“Well, I can see right now he has repetitive motions. He’s walking in circles.”

“Actually, he’s singing his favorite song and it’s a circle song. He’s bored. He only walks in circles when he’s singing to himself.”

“But he doesn’t have joint attention. He should have had that a long time ago and he still doesn’t.”

“What are you talking about? We go to the park and point at planes together all the time when they fly overhead. His joint attention may not be perfect, but it’s there.”

“Does your child like Mickey Mouse?”

“I guess so. As much as the next kid, I guess.”

“Look over there! It’s Mickey!”

My son was facing the door because he wanted to leave, but he looked over to see what Dr. Neurologist was pointing at. Dr. Neurologist claimed he didn’t see it and tried again. This time Little Bear glanced for a second, but he already knew what was there, so why linger?

He wrote on his paper “NO” next to “joint attention.”

He went through the list… Questioned us. “Observed.” At the end, he paused… I knew why. Because I’ve done the MCHAT a thousand times. I do it every single month. And for the past 3 months or so it has always resulted the same: “At risk.” A year ago he was “high risk.” Now he’s “at risk.” He has improved greatly. He’s no longer a clear cut case. Dr. Neurologist seemed upset at our son’s five second diagnosis. He told us to come back in nine months.

Papi Bear and I left furious. We were both expecting our child to leave with good news and we felt that this doctor had not even opened his case file before we walked in. The tipping point for me was the spiel on genetics when our son’s genetic testing was clear. This told me that this doctor knew nothing about our son. He cared nothing about our son. He didn’t want to do anything about our son. He just threw him in a heap with a bunch of other kids and couldn’t be bothered to look up his records and see what he had said previously.

I called the office the following day to make an appointment with the other neurologist in the practice. No can do. They don’t do “second opinions” within  the same practice. There is one other practice in my county and we’ve been trying to get an appointment for a year now without success. I was in tears because nobody would help our child. I complained to Big Children’s Hospital’s complaint line and they said that this is a separate office that doesn’t represent them. I told them, “Like hell they don’t represent you. They have your name on their office and they are in your building. They most certainly represent you. They’re your neurologists on your website and I just want to see a different doctor because this one didn’t even read my child’s case file.”

Nope. Nothing. Can’t do a damn thing for us. They said they would talk to the office manager and get back to us. It’s been over a week and nobody’s called me. I’m not surprised in the least.

So that’s where we are now. We’re nowhere. We have a horrible neurologist who doesn’t look at our son’s data with an objective eye. We can’t get an appointment with another neurologist because there are literally none outside of these two practices. We paid for these expensive tests to be done and nobody bothered to properly compare them to the first ones.

I’m just done.

Playground

Little Bear has been getting 15 hours a week of ABA for about 3 weeks now and the improvements have been measurable. Today he was eating his dinner in his high chair and he pointed to the napkin holder and said, “Yo ee ne.” Which is close enough to, “Yo quiero (whatever – you pointed!)” for me to be thrilled. Tuesdays are always especially hard for him because we have PT at my mother’s house, ABA for three hours at home, barely a 2 hour nap, then SL, followed by another hour of ABA. Since he did so well, I took him and his brother to the park.

The boys were running around, having a great time. Big Bear, who is four, insisted on taking his matchbox space shuttle with him. He was running around the playground, Screen Shot 2017-06-20 at 11.38.07 PMclimbing and playing with the shuttle when this slightly older child, maybe 5 or a young six, came over and tried to take it from him. I noticed immediately that the child was almost certainly on the spectrum. He was not making eye contact, he was not noticing anything except the space shuttle – even when he pushed my son, he never looked away from the toy. I intervened and told the child, “Let’s put the toy away so we can play together.” The child did not look at me and said, “My shuttle.”

The boy’s mother came over and looked mortified. I said, “Oh, don’t worry. My younger child is similar.” I smiled, trying to signal, “It’s okay. My son’s on the spectrum, too. It happens.” Her response was, “I hope not. Of course I have the kid who likes to mug other kids on the playground. It’s because he’s an only child. He doesn’t understand that he needs to share.” She reminded her son that he has five shuttles of his own at home. I later saw her leading him around with a backpack style leash on him.

It was at that moment that I felt a profound pity for that child. Could it be that his mother didn’t realize or want to admit that he has special needs? This child was at least kindergarten age, if not first grade, and he spoke to me on the level of a young two year old. It really hurt to see a child that may have had the potential to obtain fluent language and develop social skill muted by a parent who just explained away the differences.

I sincerely hope, with all my heart, that she was simply embarrassed by her child’s behavior and that he is, in fact, receiving a full schedule of therapy. No child deserves to be denied his or her future.

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.

“I don’t think his final diagnosis will be Autism.”

In 2002, I met a girl online while searching for other fans of a Spanish pop singer. We quickly became friends and, when my best friend died of lupus a year later, she was a huge support for me. Fifteen years later, we remain close friends and confidants. During those fifteen years, she went on to become a Pediatrician. Dr. Friend now works at the clinic of a prominent hospital in her city.

She lives far away from us, so she hasn’t seen Big Bear since he was a baby and this was her first time meeting Little Bear. She knows that Little Bear has an ASD diagnosis and I had told her about my husband’s freakout on Monday.

Little Bear has done phenomenally at home with me this past week. On Monday, he was throwing tantrums and wouldn’t sign “want” at all. Today he didn’t throw a tantrum until 3 hours into our day when he was legitimately tired and done. When we did our puzzle together, he not only signed “want” every time, but he coupled it with “Yo” (“I” in Spanish) and the name of the animal that the piece was related to. This was after only four days of working with him at home. He is like a different child.

So it was this Little Bear that Dr. Friend met. She gave him a board book of Brown Bear Brown Bear What Do You See and, after reading it twice, read Dr. Seuss’s ABC with him. She was surprised to see that he knew huge portions of the book by heart and was able to turn the pages with minimal help.

Later, we took our cat to the vet since she had been suffering from a UTI for a week. Little Bear fell asleep in the car on the way. I asked Dr. Friend to stay in the car with him while I took the cat and Big Bear inside for our appointment. At some point during the appointment, he woke up and she brought him inside and showed him the cats and the fish. During the entire time, he was well behaved, held her hand, and smiled at her while he laughed at the animals.

Later that evening, Papi Bear and I took her to a Brazilian restaurant for live music and too many caipirinhas. After two or or three, I asked her for her opinion on Little Bear.

“I only just met him, but I don’t think his final diagnosis will be autism. He doesn’t exhibit a lot of the signs of children on the spectrum. He is delayed linguistically and socially, but he was completely fine spending time with me and he’s very interactive with people he knows. He’s very affectionate, he follows directions or he at least understands them and chooses not to follow them.”

She advised us to continue with his therapies, get as many as possible, have him in the special needs school for at least a year, but she thinks he will eventually mainstream.

I think this is what my husband needed to hear and I do think her comments are more along the lines of what the neurologist feels, even though his therapists and pediatrician continue to say he is autistic. Ultimately it’s the symptoms that matter rather than the actual diagnosis, but to hear from a trusted friend that he is social and cognitively where he should be definitely relieved some of my anxiety.

The stages of grief

I’ve been in the acceptance phase of Little Bear’s diagnosis for a long time now. I spent weeks crying, blasting my self-soothing music, crying, “Why my son? Why my baby?” at absolutely no one. I mourned his differences as if I had lost a child. I did lose a child. But in losing the child I imagined he was, I began to meet, love, and adore the child he is.

This morning we started our homeschool sessions. I think everything went well except for table time. We definitely need to work on table time. His ABA therapist came at ten and he did a wonderful job reading books with her and taking breaks before transitioning back to his assigned activities. She gave me ideas on how to organize his day and get him to do what he needed to do. When she left, I felt very positive about his future. He knew at least two words on every page of the Dr. Seuss ABC book, he named my sister, my mother, and my mother in law and he asked for food every time he wanted it. To me, it was a very successful day.

I filled out his transition papers for preschool. I requested a special needs school with complete knowledge and acceptance that this is what my son needs. It was a good day.

My husband has also gone through stages, but today was not a good day for him. Little Bear was rolling his head back, not answering to his name, and being generally disinterested in anything my husband said or did with him. On Mondays and Wednesdays I teach at night, so I wasn’t there to help get him back on track or figure out why he was derailed at dinner/bedtime.

I came home late from work. I had papers to grade and tests to write and I always work more efficiently from my office or a classroom compared to my home. I came in and my husband was on the couch, classical music playing, feeling very down. He had been reading about ASD and was full of questions, the biggest one being: Why our son? Why our family?

He broke my heart more than once during the conversation, although I didn’t tell him. The first time was when he said he didn’t want to have any more children because of the risk that another one could have ASD. I very much want a third child and Little Bear isn’t confirmed ASD yet. He has ASD-like symptoms, but his neurologist is heavily leaning towards delayed myelination. Since delayed myelination isn’t genetic, I see no reason not to have a third child. I want a third child. I very much want to have a third child in the next year.

As he kept saying what pre-occupies him and what scares him and what his fears about the future were, I tried to remind him repeatedly that our little bear is not a lost cause. Looking at where he should be cognitively, he hits every single milestone except following two-step directions. When looking at what a 3 year old does cognitively, he does everything except turning a doorknob and playing make believe. His delays are purely linguistic and social in nature. I have no doubt Little Bear will eventually mainstream once his language skills take off. How easy school will be for him is another question. My husband doesn’t seem to share those feelings. He fears Little Bear will be in a home and need constant care for life. I just don’t see that happening. His language was at an 11 month level 6 months ago. He tested at 18 months two months ago and he has gained an avalanche of words and phrases since then. He’s potty training on schedule like a neurotypical 2 year old. In other words, he’s making progress.

That wasn’t the moment that broke me, though. I asked him if he’d rather an autistic Little Bear or no Little Bear. The obvious response should be, “Autistic Little Bear.” His response was, “Please don’t ask me that.” My heart broke in that moment. My heart shattered into a thousand pieces because, while I’d love Little Bear to be able to walk through this world as comfortable as possible, the idea of this world moving on without him is a possibility I would never want to consider.

Then came the argument of secrecy. My husband does not like to tell people Little Bear is autistic. I tell people all the time. I really don’t see it as a big deal. I tell family. I tell strangers. I tell anyone that wonders why my 2.5 year old acts like an 18 month old. I think it’s better to be honest and have them treat him with kindness and empathy than have them think we’re awful parents. My husband has not told the vast majority of his family. He says, “I don’t see why they need to know. It’s private.” To me “private” means “embarrassing.” His family is “private” about anything and everything that can cause discomfort. I am not. This is a continual collision point in our marriage and I see it continuing to be so as we move forward with Little Bear’s treatment.

So now we’ve gone from having a venting conversation to not talking because I’m too public about Little Bear’s diagnosis. And that, too, breaks my heart.