Up until now, I haven’t mentioned Beany much. I wanted to keep this blog focused more on how autism plays out in our family journey and I wasn’t entirely sure where Beany fit in….until now. We’ve recognized rigid behavior in Beany for quite some time. Over the last 6 months or so, our concerns grew to the point where we could no longer dismiss her outbursts as “head strong” or “willful”. So, almost a year to the date of Blue Boy’s assessment, we had Beany evaluated. Same clinic, same doctor. Deja Vu. We were much less afraid this time but also much less sure of the likely outcome. We expected the doctor to identify characteristics of the broader autistic phenotype, but not enough of them to result in a clinical diagnosis of autism. We figured this was our segue to services that could help with her rigidity, anxiety, and difficulty regulating her emotions.
She was a trooper during the assessments – one for autism and one to look at her language/cognitive abilities along with other measures of early learning. She tried SO hard and you could visibly see her confidence shaken when she couldn’t answer a question. The way these tests work is to keep asking questions until a certain number in a row are wrong. As such, she had to “fail” and this was very, very hard on her. At some points she just gave up answering out of fear of getting it wrong. It broke my heart to watch her struggle. After all the assessments were done we still did not know what the results would show.
Two weeks later we got the news and felt gut-punched. Beany would be one of the first kids diagnosed with an Autism Spectrum Disorder under the new DSM-5 criteria. Our meeting was on a Friday, the new criteria went public the following Monday. We left the office that day in shock and disbelief. We had been here before, but this felt so different because we really weren’t expecting it this time. The assessments confirmed what we did already know about Beany…she is quite smart; her language abilities are equivalent to a 4 – 4.5 year old. She is likely gifted in some areas while experiencing developmental delays in other areas….she is twice exceptional.
Mommy looked at me over dinner the other night and lamented “Well, you sure hitched onto the wrong wagon”. I have never thought that for one second. I told her that I had hitched onto a wagon that was never easy but always worth the extra effort. Before Blue Boy and Beany were born I actively wished for “average” kids, I didn’t want outliers. I figured the most comfortable (safest? easiest?) place for them would be right smack in the middle of the bell curve. Oh, how boring that would have been. In retrospect, I am truly happy that wish did not come true – I have two very special, very exceptional kids that I couldn’t love more. Life is not going to be easy for any of us but I bet it will be quite a ride! Welcome to the header pic, Beany!
I didn’t mean to stop blogging, but life happens. At first I was conflicted. I wanted to write a really good post for April, which was Autism Awareness Month. You see, there are two overarching, highly generalized camps among autism parents. On one side are the folks that are trying to “fix” their children and take away their autism and on the other side are those that accept their children for who and how they are, focusing on supports instead of cures. There is a movement afoot that says there is enough Awareness…it’s time to move on to Acceptance. I wanted to equate being born autistic with being born gay…would I take it away if I could? Would that fundamentally change the person I am? Would Blue Boy still be Blue Boy if he wasn’t autistic? I had all these ideas and conflicted thoughts and never got anything down in black and white.
That was April. Then came May…it was a whopper. We had IEP meetings, birthdays, more assessments, and another diagnosis. Oh, and I have been laid off in all but name and Blue Boy is at an all time low on the behavior scale…slapping and throwing things with wild abandon. I have had plenty of material to blog about. But, truth be told, I have been too depressed and struggling to stay afloat to have anything left over to spend on writing. I think I may be surfacing though, so I thought I’d clear the air so I can feel free to move forward. Writing helps…I just have to have a toe hold to start from.
We are all about Elvis in our house right now. Yes, Elvis. I don’t even remember how it started, but Blue Boy took an instant liking to Elvis and his music. What’s not to like…charismatic, animated guy that plays the guitar and dances. Grandma recently visited and brought a DVD of great performances. Beany jumped on the Elvis bandwagon when she saw him perform ‘Teddy Bear’ and ‘All Shook Up’…she practically swoons every time we watch those – it is very sweet. Blue Boy has taken to saying “I am ‘Guitar Man’ and Beany is ‘All Shook Up'”. We are using this as an opportunity to teach about ‘favorites’ and to encourage him to express his likes and dislikes. I grin ear-to-ear every time he strums his ukulele and sings ‘Blue Suede Shoes’…I even got it on video.
I’m not sure there is anything about Elvis he does not like. We printed out some pictures of Elvis for a school project and made extras for him to look at. He loves to run around holding them, mooning over them, and handing them out like trading cards. He has posed in the mirror with a picture in one hand and a bowl of raisins in the other…beaming at himself with two of his favorite things. The pictures are sticky from time at the dinner table. He even pretended to feed crackers to Elvis.
One night he insisted on going to sleep with a picture of Elvis. After an hour or so of looking at the picture, talking to it, and singing songs with it he called me into his room and asked me to put it on his dresser. Somehow he was able to understand that it was too much stimulation and he needed some space. I was very proud of him for imposing limits on himself.
I had been listening from the living room, wondering if I needed to intervene. I get a lot of joy from watching his enthusiasm for Elvis. I love knowing what excites him, what makes him happy. I love to think of all the songs he doesn’t know about yet and wonder which ones he’ll like. I want to buy him a coffee table book full of beautiful pictures of Elvis. I’m presently resisting the urge to run out and buy him a red guitar so he really can be the Guitar Man, just like Elvis. I also worry. I worry because Blue Boy can get “stuck”. For about a month, we had to look out the front window every morning and discuss the street lights. There are the days at the zoo when he is only interested in the storm drains. There was last Saturday and literally dozens of high-fives with the Easter Bunny and the near-meltdown when we left the bunny for the egg hunt. In the vernacular of autism this is called perseveration.
per·sev·er·a·tion – noun \pər-ˌsev-ə-ˈrā-shən\: continual involuntary repetition of a mental act usually exhibited by speech or by some other form of overt behavior. For example, repeating a word or phrase, lining objects up for hours, or becoming fixated on a certain topic might be considered preservative behavior.
I’m not too worried about the Easter Bunny…bunny encounters will diminish after this coming weekend and will (likely) fade to memory. But what about Elvis? Is he an interest to be developed or is it perseveration? And if it is perseveration, so what! I think that as long as Elvis is not to the exclusion of all else, then bring it on. Of course, I am not immune to my own hypocrisy. Elvis admiration occurs in our home where only we see it. Easter Bunny encounters happen in public for all the world and friends and acquaintances to see. I wish I could have felt more like Beany apparently did. She wasn’t so sure about the bunny and was keeping her distance and watching Blue Boy with the biggest smile I have ever seen from her. She thought it was great and Blue Boy’s comfort and success with the bunny encouraged her to throw up a high-five of her own to the bunny. He helped her enjoy the bunny, he helped her to be successful. But I was also aware that he was stuck…he couldn’t leave the bunny or stop giving high fives. I tried to redirect, to distract, to get him away from the bunny. I told him other kids needed a turn, the bunny was getting tired, it was time to hunt eggs. Was I being a good parent or just self-conscious and embarrassed? A little of both?
I have clearly recognized my embarrassment at the zoo when the other kids are ooohhing and aaahhing over a jaguar and Blue Boy is running full tilt towards a storm drain screaming “It’s a really big drain!” I should be thankful for his language skills, thankful for his enthusiasm, thankful that there is something that interests him so intensely. I can recall kneeling next to him, staring together into the yucky water below the drain cover and feeling sad in a way I can’t articulate. I know the embarrassment and sadness are my problems, not his. There are adjustments that I need to make in my thinking. I need to stay in the moment with him. I wish I could see the world through his eyes. I try. After peering into the murky drain for a while, I looked up at him with a big smile and said “Let’s go find another one!”
I am sure I have earned a special place in parenting hell for thinking those words. The fact that I did a little happy dance in my head as we left the birthday party will certainly seal my fate.
It’s not that I don’t sympathize with other parents, believe me, I sympathize. But, for once, it was not Blue Boy or Beany that was melting down or throwing up at an event. Yes, I’m afraid that has become my measure of success for outings with lots of unfamiliar people, activities, and food. To have fun seems like asking too much. But, this past Sunday afternoon, they did have fun…we all had fun. It was not without drama on our part; but, the drama was mostly only noticed by me or Mommy.
Blue Boy and Beany were both excited to say happy birthday to fellow twins – we had seen the birthday boys recently so they were excited to go and play. We discussed the possibility that there might be “special treats” at the party…a term we usually reserve for something sweet and baked. Beany threw out a hopeful bid for sugar plums (purple, sugar covered gummies they had memorably received from Santa) as we left the house. We were off to a good start.
As we arrived at the party, Blue Boy ran (yes, literally ran) to the birthday boys’ mom – he’s had a special thing for her since he was a tiny infant – it made me smile. But, then he caught sight of a “daddy” and stopped short, turning back to me with a decidedly unhappy and anxious look on his face. Somewhere in his second year Blue Boy developed a fear of men. We took an ill-fated approach and tried to explain that men were just like Mommy and Mama only we called them daddys or something botched-up like that. Now all men are “daddys” and he still doesn’t like (most of) them….we think it might be the big, deep voices but it’s hard to say. Mommy and Beany worked their way into the house, Blue Boy refused to go inside. We sat on the front steps for a while and I tried to work him closer to the front door. A “daddy” (the birthday boys’ uncle) came out of the house and started to talk to Blue Boy…uh-oh, here it comes. But it didn’t. Blue Boy listened to him, answered a question and accepted an invitation to visit his dog who was taking refuge from the party in the back of a car. I helped Blue Boy stand on the back of the car and pet the dog…he was thrilled. I was thrilled.
We moved back to the steps. I asked if he wanted to go inside…’no’. The birthday boys’ aunt asked if he wanted to come inside for a balloon…’yes’. He marched right inside, moved through the crowd and to the back of the house where there was a beautifully set kids table with a balloon at every tiny chair. He said ‘I want light blue’. Blue Boy also asked for the dark blue balloon for Beany…will wonders never cease. I was dumb struck and giddy.
Beany had a moment when she realized the party’s hired entertainment was leaving. She had yet to screw her courage up after an initial attempt to participate was abandoned..it was a bit raucous and she is very sensitive to noise. I told her she had been very brave to try and that I should have told her they would be leaving so she could have another go at it. She was disappointed but I also recognized that this was more about control than anything. She has this burning need to control resources. Her head was tipped towards the floor and I could see her trying not to cry. I was braced for the meltdown. It didn’t happen, she accepted a hug instead. Um, now I know these are not my kids – I had a fleeting body snatchers moment.
They sat/stood right behind the birthday table. Happy Birthday was sung. The candles came and were blown out. Still no tears, no screaming, no terror over the fire, no meltdowns. I was so happy for them and, yes, relieved for me. A boy whispered a secret in Beany’s ear – she’s not telling or can’t remember what he said. They ate a cupcake – Blue Boy actually ate it, he didn’t just lick it. The last bite was dicey, but I cleared his mouth and gave him his sippy cup. Yay, no throwing up. He didn’t panic. He asked for another. We quit while we were ahead. They drank juice out of a box using a straw. They were happy. They were kids at a birthday party.
There was crying, there was throwing up. But, it wasn’t my kids.
Cody is Blue Boy’s doll. Last night we were trying to herd the cats….er, get the twins to settle down for our nighttime story, when we heard those words from Blue Boy. Sure enough, there was a naked Cody sitting on the dusty potty chair that neither twin had shown any interest in for well over a month. Blue Boy was standing proudly next to him. Beany came zooming across the room to look at the miracle – she quickly started trying to arrange Cody so he would be more comfortable. There was a tussle of body parts and Cody fell into the potty. Beany thought he needed to get dressed, Blue Boy wanted him to stay naked. Cody was quickly forgotten and we managed to get everyone sitting down for a story.
This was big, really big. Kids on the spectrum frequently struggle with play. All the professionals in Blue Boy’s life tell us that play, and particularly pretend play, are skills that we need to teach him because it won’t come naturally. So, along with all the other toys I have purchased to try and engage Blue Boy, I got Cody. Cody has a penis. I thought that would help with Blue Boy’s ability to identify with Cody and lead to better engagement. And, at first, it did. But then, like so many other toys, Cody was forgotten and he laid sleeping undisturbed in his tiny little pretend bed for many weeks. If you brought Cody out and suggested he might be thirsty, Blue Boy would offer him something to drink. If you said Cody is hungry, then Blue Boy would share his snack. But it was prompted, always prompted. Last night was not only unprompted, it was novel. We have never suggested that Cody might have to use the potty. And, not only was it unprompted and novel, but it might also be a gateway to potty training – hooray!
We haven’t really worked on potty training yet – it is another notoriously tricky area for some autistic kids. Beany showed an early interest around 18 months and then, poof, it evaporated. Blue Boy showed an initial fear of the potty and wouldn’t sit on it. Then he would sit on it, but never with his bare bum. We let him move at his own pace. Beany took up interest again with a vengeance last summer, but we were so distracted with the new diagnosis and all of Blue Boy’s appointments and needs that we didn’t follow through and she lost interest again. During that period, Blue Boy would get really excited for Beany when she had a “hit” and soon was sitting on the potty bare-bummed and even had a hit or two himself. We probably should have jumped on the potty training bus at this point, but they were just starting preschool and having such a hard time that we couldn’t imagine doing potty training simultaneously. Particularly since they are both afraid of public restrooms – meltdown, hysterical, terrified. They have been since they were infants. We think it’s a noise sensitivity thing – blowers, toilets flushing, echoes. So, for us, potty training will also need to include de-sensitizing them to public restrooms if we ever want to leave the house again!
Such a small thing, putting a doll on a potty. In a house with typical kids, it might even go unnoticed. But in our house it is cause to celebrate. No, it wasn’t sustained pretend play. But it was a beginning. And, it might come in handy when we finally push the potty training this summer!
My personal experience with receiving a diagnosis for myself is that it comes with a treatment plan. High blood pressure – take this pill, exercise, lose weight, monitor your numbers and check back in 3 months. Pretty straight forward, very prescriptive. Not so with autism. Blue Boy’s diagnosis came with about 10 pounds of documents, dozens of links to “helpful” websites, a suggested reading list for parents, and 9 separate treatment recommendations. There is no plan, just a lot of information that the parents are left to sort through, understand, and somehow apply.
Mommy suggested we develop a flowchart and work our way through it. Great! A road map….I like maps. I started by putting a bunch of ovals on a page. The idea was that I would put each of the recommendations in a bubble and then we could “connect the dots” in a way that made sense and resulted in a plan for moving forward. Here is my vision:
Problem was, nothing made sense. A speech therapist? He talks, does he really need a speech therapist? An occupational therapist? Well, this made a little more sense once I understood it was for sensory issues and not about employment. Where does this go? I dunno, just stick it in a bubble, we’ll rearrange the bubbles and connect them later. Early intervention services…that sounds good, but isn’t that the same as speech therapy or OT? Bubble. Early intensive behavioral intervention…I don’t like the sound of that one, makes me think brain washing. Don’t even want to put this in a bubble. Just keep it all on the table, open mind, keep an open mind I told myself. Fine, bubble. Functional behavioral assessment. OK, sounds like we should assess behavior before doing a behavioral intervention….Oh, snap. Wait a second, this is talking about problem behaviors and the intervention bullet is talking about autism-specific therapy like ABA. WTF? Bubble. OK, what else is on the list. Social skills. He’s 2 for crying out loud, don’t all 2-year-olds just parallel play at this point? OK. OK. Bubble. What else? Something has to make sense. Re-evaluate and ongoing monitoring. Yeah, whatever. Bubble. Medical follow-up for genetic testing. What good is that going to do? We can’t change his genes and besides, he nearly tore my ears off during his 2 year well child visit trying to get away from the doctor by climbing over the top of my head. A blood sample? Bahaha! Oh, wait. Final item is overall program structure…should’ve started with this one. At least 25 hours of intervention or active engagement, preferably in a 1:1 environment, per week. Are you f-ing kidding me, how are we going to fit in 25 hours of therapy in a week let alone pay for it.
So we took a deep breath and started arranging bubbles and trying to connect them. We got something similar to this:
Lots of question marks and no clear path – we had no idea where to start. We called back the autism clinic and told the doctor we were overwhelmed…she told us to start with early intervention through the birth-to-three program but to be aware that Blue Boy might not qualify for much. He was not showing any significant delays (yet…I thought to myself in a moment of despair) and standardized tests often failed to quantify the “deficits” associated with autism. She also reminded us that we didn’t need to do everything at once.
Today, I can look at all of the bubbles and I know right where everything goes and how it all fits together. In the immediate, emotional quagmire of a diagnosis it was daunting, overwhelming, emotionally paralyzing. Ultimately, a lot of early decisions were made for us due to availability of resources. Birth-to-three qualified Blue Boy on the basis of his diagnosis alone. However, since he wasn’t significantly delayed in any area (yay!) he only qualified for one hour a week with a special education specialist (boo!). Hardly the recommended 25 hours.
I hit the reading list hard. I tried unsuccessfully to negotiate extended leave without pay from my workplace (that my mom graciously offered to subsidize) so that I could focus on educating myself. I purchased a bazillion books and received many more as a generous gift from my sister – I now have my own autism library. With no large chunk of time to devote to reading, I did a lot of skimming. Luckily, I got pretty good at picking out the highlights and letting go of interesting-but-not-necessarily-immediately-useful information.
When I started going through ‘More Than Words’ by Fern Sussman I quickly understood that Blue Boy did need a speech therapist to help with his flexible speech and communication skills since so much of his language was not “functional” and his non-verbal communication was severely delayed. We are fortunate to have private insurance and Blue Boy started receiving 1 on 1 speech therapy shortly after his diagnosis. It was a rough start with a lot of anxiety, but Blue Boy loves his therapist now and is very comfortable with her. I go to all of the sessions and it is often the highlight of my week. It has made a huge difference in our ability to communicate with and understand Blue Boy.
We knew Blue Boy had significant sensory issues, but they were difficult to ferret out because they seemed to change from day-to-day and situation to situation. He is a very cautious and anxious boy and our primary goal in this arena was to help him feel more comfortable and confident in the physical world. We put our names on a 3 to 6 month wait list for occupational therapy services at a clinic that uses DIR®Floortime™ techniques. We chose this clinic because their approach focused on how individual differences in sensory processing impact overall functioning. The practice empowers child-parent interactions and helps parents understand how individual differences relate to the range and variation in sensory, sensory-motor and motor planning abilities. It took about 4 months for a slot to come open, but Mommy takes him once a week and we are really starting to see changes in how Blue Boy relates to his environment. He actually jumped off a curb the other day and planted two feet squarely in a puddle. It was awesome. My jaw dropped. I had never seen him jump off of anything unless there was a big soft mat to land on.
Blue Boy’s doctor emphasized that getting him into a structured environment with other children should be very high on our priority list – this was the social skill component. Preferably, something preschool-like that would require him to participate on terms other than his own. This would be a tall order. We had tried community music classes..he loves music. Disaster. He mostly just screeched and wanted to hold the blue egg shakers and only the blue ones the entire time. This social skills class would also have to be something that Beany could go to and that our Nanny could bring them to….it would just be too many hours for us to be off of work. We were looking for something that would be a couple of hours, two days a week. Ultimately, we switched birth-to-three providers and gave up our 1 hour of in-home special education time for 3 hours in an integrated toddler program. We figured it would be a tough transition for both Beany and Blue Boy, but that they would adjust to 1.5 hours in a “preschool” two times a week. Ummm. NO. Six months into it and their Nanny is still in the classroom with them due to anxiety issues. As long as she is there then everything is OK. They even seem to enjoy their time and after weeks of boycotting circle time they sit on their little mats and sing songs and do all the hand motions. Good has come of it….all I can say is that it’s a work in progress.
So, let’s see. That’s just 5 hours of “therapy” each week – a far cry from the recommended 25 hours. But, we decided it was enough. Speech, OT, and “school” – it’s a lot when you are only 2. We pursued parent training options so that we could make the most of his non-therapy hours. It’s been a challenge because we both work and he and Beany are with a Nanny for the better part of the day. A Nanny that loves him (and Beany), but doesn’t think there is anything wrong with him other than his anxiety. She engages him better than most. So, for now, it works
It’s been close to 9 months since we received Blue Boy’s diagnosis and therapy decisions are a new constant in our lives. It is not static…I’m sure there is more to be done. We are currently in the middle of the assessment process to determine if Blue Boy will be eligible for special education services when he turns 3 in the middle of May. We need to decide where he (and Beany) will go from here….integrated developmental preschool or a private preschool? Same school or different? How will that affect OT and speech? What else should we be doing? What should we not be doing?
The questions and need for decisions never end. And, while our questions may be different from those faced by many other parents, I’m learning that parenting is all about making the best choices for your children regardless of the path they are on. For me the hardest thing to do is nothing. I want to keep throwing “fixes” at Blue Boy – I am learning to take my cues from him. To allow him the space to be who he is while challenging him to stretch his comfort zone in a way that he can be successful. It is difficult. We are all growing.
I have done a horrible job documenting the lives of Blue Boy and Beany and many small moments have been lost. Fortunately, much has been captured in pictures if not words. But there are also things I don’t think I will ever forget even with no pictures, no Facebook posts or bragging emails to relatives. I remember Blue Boy standing in the big, overstuffed chair looking out the front window – he was naked from the waist up because he was going through a phase where he refused to wear shirts. He was saying something that I have forgotten because as I watched him excitedly “talking” about something he saw outside I suddenly had an epiphany – those are not his words…..they are almost never his words. All that great phrase speech that I thought he had vanished in an instant.
Kids learn to talk by copying what they hear. “Look, there’s a garbage truck” might come back to you as “look, garbage truck” or “mama, garbage truck” or even “truck…garbage”. The typical child learning phrase speech will key in on the important words, remember them, and then use those words the next time they see a garbage truck. Blue Boy was remembering the entire phrase as a chunk or blob of information and whenever he saw a garbage truck he would say “Look, there’s a garbage truck” exactly as he had heard it the first time he made the association. This is echolalia, delayed echolalia to be more precise.
I began to scrutinize everything he and Beany said and compare their use of language. Beany sometimes repeated entire phrases exactly as she’d heard them, but usually she put words together to make new phrases of her own to express an idea or thought. Blue Boy understood and used lots of nouns, but very few of his word combinations were original. The amazing thing is that he largely used his “canned phrases” in entirely appropriate ways so it appeared as though he had rather advanced language abilities. He also used immediate echolalia which is when a phrase, or the last part of a phrase, is repeated as soon as it is heard. His desire and ability to communicate with us even though he was struggling and actually quite delayed in his expressive language abilities was and is impressive.
My initial instinct was to “fix” his expressive language and get rid of the echolalia. I started researching echolalia online and talking to his speech therapist and the other professionals in his life. I’m glad I tend to research first and act second because my instincts were all wrong. Echolalia can not be “fixed” and getting rid of it would deprive Blue Boy of his means to communicate; not that I think we could actually have gotten him to stop talking! Instead, the challenge was to help Blue Boy learn how to use language more flexibly.
Basically, we used one-up-man-ship. This was hard for us because we were used to just talking to Blue Boy and Beany…we had been talking to them conversationally since the day they were born. We had been told how important this was and we were actually really good at it. Now we had to take a new approach with Blue Boy – listen to him, pick out the original speech and then one up him. If he was using single, original words then we would add a second word. If he put two original words together then we would add a third. For example, playing with trains would sound like this:
Blue Boy: “train”
Me: “Blue train” and show him a blue train. “Green train” and show him a green train.
Blue Boy: holds up yellow train and says “yellow train”
Me: “Yes. Fast, yellow train” while making the yellow train move fast on the tracks. “Crash yellow train” as it falls off the tracks.
We didn’t always talk like that, but we would find times to sit down with Blue Boy and focus on breaking language down into its parts. He knew we were trying to “do something” and he was resistant at times. He has this uncanny ability to read people and knows when you are trying to elicit something specific from him. It was a real challenge to work with him like this without “tipping him off”. Blue Boy’s a pretty smart little guy and has been working really hard over the last 6 months and it has really paid off. He has gone from having moderately delayed expressive language to right on target for his age. Whether it is the therapy that helped or if he just needed a bit more time to develop more flexible and functional expressive speech we’ll never know. I’m guessing it’s been a bit of both.
It’s easier for him to communicate with canned phrases so the echolalia continues along with the flexible speech, particularly when he is tired or otherwise stressed. His flexible speech is a struggle that you can hear…he stammers and gets stuck on words. You can feel him searching for the word he wants. He wants so badly to communicate and I imagine this will get easier for him with time and practice. I really couldn’t be more proud of him.
It’s funny, but this is the question we are most often asked when we tell people Blue Boy is autistic. Maybe it is because he often appears so “typical” or perhaps they have concerns about their own child. But, in all likelihood, it’s just a safe question to ask.
So, how did we know? This may sound callous, but our suspicions and concerns developed because we had a control or point of reference…Beany! Blue Boy was a couple of weeks ahead of Beany in all of the early milestones – head control, rolling over, sitting up, crawling, standing. When Beany started pointing at everything and trying to name objects we expected Blue Boy wouldn’t be too far behind. After a few weeks and still no pointing, I started telling myself this was probably one of those boy/girl things, right? Then we started to notice that Beany would turn towards us, or at least react, when we called her name but Blue Boy rarely did. Well, he was just really focused, right? We also considered that there might be a problem with his hearing – after all, he had taken a very long time to pass his newborn hearing test. We started to “sneak” up on him from behind and say his name or talk to him to see if he would react to us. Our results were inconsistent, our methods anything but scientific. Our pediatrician was not worried, but we couldn’t shake the feeling that something was not “right”.
At about 15 months, we took Blue Boy in for a hearing test. He failed. Not because of his hearing, but because the testing environment caused him so much distress that he could not be tested. We were told to come back in 3 months and try again. My emotions over that next 3 months were wide-ranging. On many days I chided myself for being such a worry-wart because he was clearly a happy, charming little boy who loved to engage people. But there were plenty of days when I couldn’t stop ruminating on the pointing thing; I was convinced that this was important. I also worried about eye contact. At a distance everything seemed fine, but up close Blue Boy would avoid looking into people’s eyes. And the mouth….why was there always something in his mouth. Not the usual toddler chewing and exploring but an almost constant need to have something in his mouth. He also held small objects in his closed hand and carried them around for hours. They were frequently blue, but not always. Blue. My sweet, sweet Blue Boy. He always chooses blue. At 9 months he sat in a baby bathtub filled with balls and one by one threw out the blue ones, only the blue ones. We gathered them up, brought them back and he did it again. At the time I thought it was strange, but I recall thinking at least we knew he wasn’t color-blind. I tried to adopt “You worry too much, he’s fine” as my mantra, but I had a growing feeling in my gut that Blue Boy was autistic.
So, I took to the internet. The site I found most helpful contained a library of video clips that showed “typical” and “red flag” actions/behaviors in various settings. I looked at every age-appropriate example clip — some left me feeling like I’d been kicked in the stomach. I was on my own in this pursuit, I hadn’t shared my autism concerns with Blue Boy’s Mommy. Mommy was operating on the assumption that Blue Boy had ADD, she is the birth mom and it runs in the family. I would watch clips at work and then go home and try to recreate the situation to see how Blue Boy reacted. Sometimes I was relieved and at other times I felt devastated. I found myself hoping it was ADD – we had some experience with that, we would know how to help him.
At 18 months Blue Boy passed his hearing test – he was still quite distressed in the tiny room with flashing lights, sudden noises and a stranger trying to engage his focus as he clung to me – but he passed with a normal field of hearing (he refused to wear the headphones). Time to move down the checklist – we discussed autism and ADD and were told a referral to the autism center was the best way to go. We were told the wait list was around 6 months and that they would call us when we were getting close to the top.
As we approached 2nd birthdays for Blue Boy and Beany I was nervous that I hadn’t heard from the clinic so I called. There was nothing in their files…Blue Boy had not been referred. It took every ounce of emotional strength I had not to explode through the phone in a stream of expletives and strangle the person on the other end. Long, winding story short, the chart was misread and the referral was made for ADD, not to the autism center – different departments, different waiting lists. To their credit, and after many phone calls and hoop-jumping on my part, the clinic backdated Blue Boy’s referral and we were looking at another 3 month wait instead of six.
During the wait, Blue Boy’s struggles and challenges became more and more apparent although we missed much of it in the moment. Spoken language exploded for both Beany and Blue Boy during this time. We noticed a few quirks – he often dropped hard consonants at the beginning of words, most of his words were multi-syllabic and rather sophisticated for “first words”, and he loved to sing songs over and over again. His language began to feel like a fire hose – he never stopped talking or singing or repeating phrases he’d heard. He had a lot of “language” but I never felt as though I knew what was in his head. Beany managed to get her point across and I could understand her in a toddler sort of way, but Blue Boy seemed to be inside his own head and I didn’t feel like I knew him. Just before his second birthday, we got a call from the autism center. There had been a cancellation, did we want it? Uh, YES!
The assessment process was very difficult for Blue Boy. From the report, “[Blue Boy] was quite anxious throughout the evaluation, and evaluation tasks could nearly not be administered to him in a standard manner….Overall, although concern is raised about [Blue Boy]’s level of anxiety, it was felt that this occurred due to difficulty with flexibility in social interaction skills. Therefore, the findings…were considered consistent with a diagnosis on the autism spectrum…” There is was in black and white…autism. So, now we know.
His actual diagnosis is PDD-NOS, Pervasive Developmental Disorder – Not Otherwise Specified. It doesn’t really mean much since the doctor told us they are pretty good at identifying when a kid is on the autism spectrum, but exactly where on the spectrum is more difficult to pinpoint. We were told we would have a much clearer picture of Blue Boy and his challenges when he reaches kindergarten age. In the meantime, we feel as though we are navigating foreign waters and struggling to get our bearings. There is a lot of information and many, many therapies out there; from excellent to harmful rubbish and everything in between. We are still sorting it all out, but I have adopted a new mantra, a new filter….”do no harm” because Blue Boy rocks.
Blue Boy has been receiving services through birth-to-three and attends “school” twice a week for 1.5 hours. Beany is in class with him as a “typical peer”. Since we are 90 days out from 3rd birthdays, we had a meeting today with Blue Boy’s head teacher and a representative from the Seattle Public School District to discuss transitioning to special education. I have read so many horror stories about this process and wanted to be prepared for this first meeting. I found a great document that helped bring me up to speed on the purpose of this first meeting and what to expect.
As it turns out, this meeting was all about eligibility and how it would be determined. Our primary role in this meeting was to sign a bunch of papers that said Blue Boy could be assessed to determine if he is eligible. We did get the chance to advocate for testing in all developmental areas since past assessments have shown some unexpected deficits in fine and gross motor skills. The head teacher, OT, and SLP at his school will do all of the testing which should help with Blue Boy’s anxiety.
We left the meeting with the impression that Blue Boy would be found eligible for services (to be determined during development of the IEP) based on his PDD-NOS diagnosis and his social/communication deficits. The school has a month to do all the assessments and the district has an additional month to review the results and determine eligibility.