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.

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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.

Semantics

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Today a friend I knew when I was in grad school made a post on facebook during a trip to the local fair asking something along the lines of “is it normal for 5 and 6 year olds to have pacifiers and ride in strollers now?” This friend has always had a penchant for the sarcastic and lives in a heavily hispanic area despite being a white man, so it was quite obvious that his comment was saying, “Latinos, you need to get your kids up and walking and not give them pacifiers.”

My children are Latino. My 4 year old rides in a stroller when we go to theme parks for safety reasons.

I decided not to play into the racism of the comment and instead mentioned that many children are special needs and require sensory stimulation in crowds and need to be in strollers for their own safety or they may simply be disabled. A friend of his responded, “Their kids will end up gap toothed and having weak legs.”

The conversation moved towards “well, there must have been a lot of kids with autism there!” My response, “1:42 boys have it. My son is autistic. So was Thomas Jefferson.” To which gap-tooth-weak-leg woman said, I kid you not, that *I* was being ableist for calling my child autistic.

I have heard the idea of “autistic” being ableist before. I have heard the arguments of  it not defining the child. I have heard them and as a mother of a child with this disability and as a linguist, I wholeheartedly disagree. I respect the desire of people who want to be referred to as “having autism” and will always follow their leads (or that of the parent in the case of young children), but I will not be told by the mother of neurotypical children how I should refer to my child who is on the spectrum. Take a seat. Pull out your suitcase. Unpack for a minute. I know I had to before writing this post.

If given a choice of terms, I would say my son does not have autism. To me, you have diseases. He didn’t acquire autism when someone sneezed on him. When he was born, he was hard of hearing. He was not “without hearing.” We don’t change the morphology of any other disability-related word to make it less “defining.” Why are we afraid to define our children or, in adult situations, ourselves, as autistic? Why can’t we embrace it as a trait rather than an affliction to be “had”?

My son was born with autism. It may not be in his DNA as far as the geneticist can see, but his tendencies were visible soon after birth. Autism is part of him. He doesn’t have it any more than he has latino heritage or white skin. He is latino. He is white. He is autistic. No, it doesn’t define him, but it certainly makes up a large part of his world view and to take that away from him and isolate it as a sort of illness is offensive to me as his mother. Also, I feel like saying he “has autism” gives the false impression that it’s an issue to be cured. He doesn’t need curing. He may need therapy to help him navigate the world, but he certainly doesn’t need a “cure” for his autism. As a very staunch pro-science mother, I also feel this term plays a bit too much into the woo ideas of it being curable through pseudoscience.

I am certain that as Little Bear grows autism will be an important part of his identity.  Every part of his identity deserves an adjective. He came to us with both a full head of hair, light skin, and autism. Calling him brown-haired, light skinned, and autistic are just naming three aspects of his being that make him my beautiful, special little man.

If he decides that he feels differently as he matures, I’ll change my way of referring to him, but for now, he is my autistic son Little Bear. If the person has any background in medicine, I may say he’s on the spectrum. You will never hear me introduce him as “my child with autism” unless the day comes when he says that’s what he wants.

So the ableists who want to call out the mom of an autistic child for defending her child and his culture… they need to take a goddamn seat and check their privilege while not defining my child according to what they feel defines him and doesn’t. Autism defines my child. Latino defines my child. South American defines my child. North American defines my child. Bilingual defines my child. Adorable defines my child. Just as a word can have many definitions, so can a child. Autistic is just one of the many listed under the dictionary entry of Little Bear.

Ear Tubes

Little Bear got his shiny new ear tubes put in yesterday morning. We were up bright and early, before the sun, and before Little Bear knew what hit him. We got to the hospital, went through registration and hung out in the pre-op room for a good hour, watching cartoons, playing on the ipad, and taking trips around the floor in their wagon. He started to get antsy towards the end – mainly because he realized I had a muffin tucked away in my purse, but luckily the CRNA came in with something to calm him down. When he was starting to feel the effects, they pulled out a phone, put on Baby Shark for him, and started to wheel him away. He was halfway down the hall before he realized I wasn’t with him.

The surgery itself was about 30 minutes from when they took him in to when they called me to recovery. Little Bear licked a popsicle, drank a cup of juice, and waited to be cleared. Little Bear was increasingly insistent that he get up and move, but he was still really woozy from the anesthesia. They said we could leave without seeing the doctor and that I could call later on for any information that wasn’t on the papers. This wasn’t our first rodeo, so I wasn’t too concerned.

When we got home, the improvement was immediate. Little Bear was listening. He was babbling. He was saying words. He still was far from where he was before the tubes fell out, but there was definite improvement. I put him down for a nap and when it became clear that he wasn’t going to take one, I went in and he said, “Hiiiii Mama. Hiiiii.” He’s never done that before. Usually he just says bye bye, but socially too late. Seeing him give  a social greeting at the correct moment, made me feel wonderful. He said peepee and caca when he was practicing on the potty. He followed simple directions again. I started to get hopeful.

Then I talked to Papi Bear, who had spent his morning in a meeting with Fancy Religious Child Care Center. He’s on probation for a week, starting on Wednesday. Papi Bear and I had already decided that we’d pull him after next week as it is, but this confirmed our feelings. Apparently Little Bear was biting his teacher and it hadn’t been reported to us previously. They suggested we look at special needs schools.
I think we’ve arrived to the point where that’s where we’re headed.

Papi Bear and I had a long conversation about it last night. He’s afraid to put Little Bear into a school where kids may be behind him. I had to make him realize that Little Bear is behind. Almost a full year at this point. He wanted to make comparisons with his older brother, who has an IEP right now at age 4. I showed him videos of Big Bear when he was 2.5. That’s when it hit him. That’s when he realized our son is severely delayed. At this age, Big Bear wasn’t saying full sentences, but we have one where we went to the zoo, and he pulls my husband over to the camels and says, “Mira! Camel on the ceiling! C C C!” Little Bear occasionally pulls us towards things, but not with the same eagerness and awe that Big Bear did at the same age.

Little Bear has improved since his tubes went in. He has only bitten me when he’s cranky from being hungry or just waking up. He’s still hitting. He actually pounded his brother over the head repeatedly with a small plastic baby ball today because his brother took his soccer ball. Of course this happened in the middle of a store. That I was doing a mystery shop at. Because that’s just how it goes when you’re the mom of two toddlers, one of them special needs.

Little Bear has been speaking more, singing again, daring to say new words, and dancing along with all his favorite videos on PinkFong. He speaks louder and more clearly. When I repeat one of his approximations in the correct form, he tries to correct himself. It’s an improvement. It’s a step towards where he was a month ago.

At the same time, I’m not sure how to handle school. He’s on probation already. They suggested trying maybe just the mornings for now, but he’s in school mainly because I’m teaching a night class on Mondays and Wednesdays until the first week of May. After that, I can pick him up without any problem and have him home before nap time.

I called every special needs school in the area today. None of them have space for him. One has a long shot space for him in the third week of April. They’re opening a class in his age group, but it’s already fully pre-registereScreen Shot 2017-04-04 at 10.43.05 PMd. He’s on the wait list. If you’re the wishing on a star type, please ask the stars to give him an extra push of luck to get in. I’m touring the school tomorrow and preparing for the emotional rollercoaster of acceptance that will come along with it.

Papi Bear and I have to decide tonight whether he’s going back to school tomorrow. He’s done so well the past two days. I see improvement and I’m absolutely terrified that it will go down the drain if we send him back to school. The special needs schools are not a problem, since he’ll almost certainly transition to one in August anyway.

We have a long discussion ahead of us tonight.

Little Bear… I hope whatever we choose is the best option for you. Always know we’re doing our best to give you the best possible outcome in life. We love you.