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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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.

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.

Tubes

When Little Bear was born, he failed his newborn hearing test. We tested him three more times and he failed, failed, and failed again. At first, we feared he was deaf. He wasn’t looking when we called his name and he only looked towards noises if they were extremely loud. We didn’t realize at the time that he wasn’t neurotypical, with the added issue of conductive hearing loss. The conductive hearing loss was confirmed by an audiologist and his ENT placed ear tubes last March.

The ear tubes helped him reach his gross motor milestones. Within two weeks of theirScreen Shot 2017-03-18 at 10.04.34 PM placement, he began to walk regularly, at 19 months. We waited anxiously for the speaking to come, but it never did. A few new words came out here and there, but no big blossom like the ENT had promise would happen. It was soon afterwards that we took Little Bear in for a neuro consult and he received his initial PDD diagnosis.

The ear tubes stayed in place until about 3 weeks ago. Around the time the right one fell out, he started to bite again. Within a week, he had an ear infection and the pediatrician said the fluid was back. That same week he bit two days in a row and he was booted from daycare. His behavior became more short-tempered and his attention span dropped. He just wasn’t himself once the tubes came out.

We went to the audiologist on Wednesday for a hearing test. He failed. We saw the ENT for his follow-up on Friday. He said the left tube was out, too. Both ears had fluid. That, combined with behavioral changes and the ear infection meant we were headed straight for new tubes. Sigh.

Little Bear loved the ENT, though. He followed him into another exam room and yelled, “BYE BYE!” to him and, “Abrazos!”

Meanwhile, I begged and pleaded with the scheduler to try to bump him up as soon as possible so he doesn’t get kicked out of school.

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.

Normal

“Let me call my husband. He couldn’t be here, but he wanted to be on speakerphone to hear the results.”

“Don’t worry about it. Everything came back normal. Your son’s genetic results were all normal. No additions, no deletions, nothing out of range. He has the results we would expect for any neurotypical two year old boy.”

Normal.

This is the first time a doctor has referred to my son as normal since we began this journey in July. Suddenly the idea of having a third child isn’t off the table and the idea of testing our older son for autism is. We have a normal 2 year old who just needs intensive therapy to reach his milestones. Of course, we don’t know why he hasn’t reached them yet or whether or not his future will include this level of therapy, but he is improving little by little and each day brings us closer to having a “normal” little boy.

When you get news like we’ve gotten in the past week, it’s hard to decide how or what to feel. First comes the overwhelming feeling of relief that the “diagnosis” of ASD is temporary. When a doctor tells you that your child is most likely just experiencing autistic-like behaviors, it somehow sounds temporary and completely curable. I mean ASD is not curable, but autism-like behaviors can be overcome, right? We’ll just do lots of therapy and he’ll continue to improve and he’ll be fine.

But then there’s the lingering fear that autism-like behaviors are just that – behaviors that mimic autism. The fact that they mimic a disorder says nothing of how long they will last or their permanence. For all we know, his prognosis remains unchanged with the added risk of seizures.

We’re very happy that our child’s diagnosis is temporary, but we also feel that we need to push hard for him to continue in his therapies and reach his full potential. To us, he’s still the same child he was before he had his first diagnosis, the same child he was when he received it, and he’s the same person he’ll be throughout his life.

He is our son and we will love him and fight for him, no matter what his medical situation is.