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.

Advertisements

Happy Moments

Tia Bear watched the boys last night while I taught my class and Papi Bear was out for a business dinner. She was supposed to put them to bed by 8. When I walked in at 9:15, they were running all over, chasing the cat and laughing about it. Little Bear saw me and came running over. I picked him up, and he started pointing and going, “wa wa wa!” Then I realized… he was SINGING! I sang the verse and he sang the chorus.

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.

Cultural Differences

Papi Bear and I are from different countries. I’m American and he’s South American. We have much in common, but our upbringings were very different and our views on childrearing often butt heads when it comes to topics such as discipline and Little Bear’s autism treatment.Screen Shot 2016-08-22 at 11.06.53 PM

Papi Bear accepts the diagnosis when we’re with the therapists and doctors. He is more eager to say his response to speech is severely deficient than I am. He is less likely to explain symptoms away than I am. He is the one who really pushed for the neuro consult to begin with. For all who see Little Bear in a clinical setting, Papi Bear is the one who accepts this reality most firmly.

Me? I accept the reality of my son having autism. I can now say it without crying. I can go to his appointments without having a panic attack when they say “autistic” and point out his deficits. I am, however, his primary caregiver and I do see differences between where he was when we started a month ago and where he is today. I also see differences between how he is when we’re alone, how he is with both parents, how he is with his brother, and how he is with therapists. He may be babbling nonstop all morning with me, but when he’s being evaluated or working in therapy, maybe one or two words will come out. He is also much more verbal with me than he is with my husband. When I lay in bed with him, he’ll touch every part of my face and whisper, “nariz…. nose…. ojos… eyes…boca… mouth,” and then wait for me to lay on my stomach and then he’ll climb on my back and fall asleep. I know a different Little Bear than the rest of the world.

Today my husband arrived home from a weekend trip to his country. We were discussing Little Bear’s progress over the past few days. He said he definitely agrees with me that Little Bear does better in the morning than he does in the afternoon/evening and that he is understanding more directions and commands. He was also very impressed that he walked across the entire house to bring him an empty apple sauce pouch and say, “Gracias,” when he gave it to him.

We discussed where we see deficits the most. I told him I see some social deficits for sure and also some minor sensory ones. He asked what I meant. I told him I notice that when he leaves his very-dark room after nap and walks into the living room, which is very bright, he will sometimes put his arm above his eyes for a few minutes until his eyes adjust to the difference in light. I also mentioned our recent trip to Tusker House at Disney World for a character meal. Both of the boys were tired, Teddy was just recovering from roseola, and the combined stress of not being 100% with high noise levels and lots of people was just too much for him to take. He freaked out and wouldn’t eat a thing. It was a very stressful experience for all of us and he pretty much had to eat in our arms in the buffet area because he would cry every time we were in the room with the noise and people.

I told my husband I had asked some moms of autistic children what they do when they go to Disney and their kids have sensory overload. One woman said, “My son wears noise-cancelling headphones and has the added bonus that he can listen to the same song over and over without bothering the people around him.” I thought that was a wonderful idea and so did all of my friends who work with autistic children or have one of their own.

My husband’s response was, “No. That’s a horrible idea. He has to learn how to deal with it. He’s not going to wear noise-cancelling headphones when he’s 20.”

To which I responded, “Maybe he will. We don’t know. When he’s 20, he’ll most likely have other coping mechanisms. For now, he’s 2 and he doesn’t know how to cope with the world around him. I want him to be comfortable in public.”

Husband doubled down. “No. He is not going to wear headphones. Just because you read something on the internet doesn’t mean it’s a good idea. We don’t even know if he’s autistic yet. They’re still testing. It still might be something else. But no matter what, we need him to learn how to be as normal as possible. He needs to figure out how to deal with it. He’s not wearing headphones ever.”

At that point I said, “But that’s the point. He’s NOT normal. He needs accommodations because he’s NOT normal. He’s autistic. And he’s two years old. He doesn’t know any other way of coping at this age. He is not normal and we can’t treat him like he is to the detriment of his mental health.”

And that’s when I left the room and silently cried alone. My son is autistic and he is disabled. He needs accommodations that make him comfortable. Would we deny a paraplegic child a wheelchair in an attempt to have him appear normal? Would we deny a deaf child a seeing eye dog in an effort to appear normal? A hard of hearing child a hearing aid? A nearsighted child glasses? Our child is no different. His father needs to understand his disability and realize that this isn’t a small learning disability that can be overcome with extra tutoring or no time limits for tests. It is something he will deal with the for rest of his life. I refuse to make my child suffer anxiety and mental anguish in the name of appearing “normal.” Besides, we’re in 2016. It’s pretty normal to wear headphones at all times in public anyway. Nobody would know he was using it as a coping mechanism. They’d just assume he’s listening to the Wiggles.

Therapy versus Home

Little Bear at therapy: Plays with puzzles for 30 minutes and says “Quack” to the duck, despite much pushing from his therapist to do more.

 

Little Bear at 1AM last night: Points to cat and says, “Two… cent. Two… cent!” (The cat’s name is 2%). He follow this up with,  “Leche, gracias.” And now he’s sitting in the play area barking at the dog in his puzzle, mooing at the cow, and saying the letters. But never with his therapist. She must think we’re the worst parents ever.

Discipline

One of the biggest challenges in Little Bear’s growing world has been a struggle for the entire family: Getting along with his big brother.

Little Bear just turned two and his brother is three and a half. They’re eighteen months apart. Big Bear wasn’t a huge fan of getting a brother – he’d be perfectly content to be an only child forever – but I think by now he most likely doesn’t have many memories, if any, of being an only child. We wanted it that way. We wanted back to back newborns, back to back toddlers, back to back everything. We didn’t want to get over the no-sleep hump just to go back to square one.

The early days were surprisingly easy. It was nothing like everyone said it would be and I honestly didn’t regret our decision for even one second. Papi Bear and I were doing high fives all around over our brilliance and blowing raspberries at all the people who said 3 was the perfect age difference.

Then Little Bear became a toddler. A developmentally delayed toddler.

Holy freaking Christ.

So now I have a recently-turned terrible two year old with a limited vocabulary and ability to understand and a slightly developmentally delayed 3 year old who is bossy as hell and doesn’t understand that his brother doesn’t think the way he does.

Examples of their “brotherly love.”

Snack time:

Big Bear: Mama, Big Bear no quiere fishies.

Mama Bear: Daselos a Little Bear.

Big Bear: No. Quiero fishies.

 

Play time:

Big Bear just randomly grabs Little Bear’s favorite puzzle and dumps it upside down. Even if he’s not playing with it. ESPECIALLY if he’s not playing with. This drives Little Bear into a rage because it’s his FAVORITE PUZZLE.

 

Bath time:

We just replaced all our bath toys for Little Bear’s birthday. Both of them want the new basketball net. Neither one wants the fishing rod. Little Bear pinches Big Bear for it. Big Bear screams and kicks Little Bear. More pinching. Big Bear elbows Little Bear in the face and cuts his lip.

 

I’m sure a lot of it is just what you would expect with the terrible twos and a three year old. Also, Big Bear was never a “terrible” two, but he’s definitely had his moments at 3. He’s also slightly delayed developmentally, though not nearly as much as his brother. Nobody has suspected autism, though we do plan to have him tested once everything has been done for Little Bear. Add into that the enormous amount of attention his brother has been receiving since his diagnosis. He only goes to school three days a week now and gets to hang out with mommy when he’s home. Mommy and Papi pay huge amounts of attention to him, trying to capture his gaze and keep it. Everything is “Little Bear, look! Little Bear, hello! Little Bear, I love you!” Lots of stories, lots of laps, lots of playtime, since that’s when he makes the most eye contact. Big Bear feels pushed aside at times.

We’ve tried to compensate. I give him extra long hugs and have long talks with him in the car. I let him help me cook, I ask him to help out with labeling the baby books when we’re reading together, and I do double pony rides. We bought annual passes for Disney World this year and plan to visit at least once a month while we can. Big Bear especially loves Animal Kingdom. He calls it “Alemanes” and it cracks us up every single time. But even at Disney, he feels like it’s more about his brother sometimes and we just don’t know what to do for him. Right now our plan of action is to tag team, but when my husband is traveling, that never works.

Hopefully things will improve after this year. Everything is a phase. That’s what I keep telling myself.

Testing 1…2…3

Today was our first appointment with the geneticist. She started throwing out all these Screen Shot 2016-08-02 at 11.26.56 AMsymptoms and possibilities, and we just answered questions about our family history as best we could.

History of seizures? No. In the family? No. What did your father die of? Heart disease. And your father in law? Pneumonia. Do you know of any person in your family with a learning disability? No, not that I’m aware of.

Lots of questions. No answers.

A form to take to the lab later today. Results will be back in three months.

Will we find out anything before then?

If something comes up on the exam, you’ll be called in earlier.

I hope the phone rings the day before to confirm the appointment. This is a doctor I wouldn’t mind getting no answers from.