"Mom! It's lost in space!"
Milo grabbed my hand and led me up the stairs. "It's lost in space!!" he cried, pulling at my arms, leading me into his room. I had no idea what he was talking about. "What in the world does 'lost in space' mean?" I wondered. He's growing more frantic and there's nothing I can do to help. Milo started looking for something all around his room, repeating "lost in space!" in between tears. Tearing apart his bed, throwing the books and toys off the shelf.
Then I got it.
Two days ago we had watched a Magic School Bus episode about the solar system and the whole class cried out, "We're lost in space!". Maybe Milo was using this to communicate he needs help looking for something? What was he playing with recently? A car? A truck? So I asked him, "Is your toy gone?" Relief and understanding showed up on his face. I'd interpreted correctly. We found the red corvette. This wasn't the first time I've had to think outside the box when trying to understand Milo. It was just the final straw that confirmed my feeling that we should have his speech assessed.
The day after Kyle started his new job, we had Milo assessed specifically for speech through our school district. We had simply grown weary of wondering if Milo's speech was delayed, so to settle our fears, we decided to just test him and see. We were anticipating that the results would show a slight speech delay, then we'd get him into therapy for a bit, and all would be good.
The first assessment was for verbal and social skills, and the results weren't that great. Milo tested pretty low for those two areas, which prompted the assessors to have us come back for gross and fine motor skills testing to make sure they weren't missing anything. We came back and the results for those weren't great either. We walked away from the assessment qualifying for therapy in all 4 categories through our school district, and with a "92% chance of Autism" note on our paperwork.
To say we were stunned is a little bit of an understatement. Autism isn't new to Kyle or I; we have seen it in both sides of our family. We were both well-versed in the common markers of it: not making eye contact, preference to being alone, extreme fascination with unusual things, sensory/texture sensitivities. Milo doesn't have any of these things, or at least the extremes we were used to, so the results shocked us and it made me feel awful for not catching it sooner.
We debated for a few days on the pros and cons of getting an official diagnosis. We were concerned about Milo getting labeled which would lead him to being held back or treated differently, inadvertently delaying him even more. We didn't know how serious his case was; would he be "normal" after a few weeks of this therapy? Ultimately we settled on getting an official diagnosis for a myriad of reasons, but mainly because it would open the most doors to get him the best treatments.
I called over 20 different neuropsychologists in Utah and the earliest appointment I could make was 9 months out; but through my aunt we had a connection to a neuropsychologist in Washington who was willing to fast track our appointment to the end of May. Milo and I flew up there and he was tested.
The results of the testing were shocking and validating. Our neuropsych confirmed that Milo's Autism isn't the kind that you can diagnose on sight; there are some categories where he clearly doesn't qualify as Autistic, but then there are two categories (verbal and social) that he definitely does fall under the Autism spectrum. Our neuropsych said he'd call it a "soft diagnosis". He gave Milo a nonverbal IQ test, through which we learned that he's a bona fide genius. His pattern recognition and matching skills are at an 8 year old level; his visual comprehension is in the 97th percentile. Kyle and I have always known Milo was good at puzzles and patterns but this was jaw-dropping information. Through the IQ test we also learned that Milo has a very difficult time with language skills, particularly receptive language; he is well below age level for verbal comprehension.
Overall, we left our diagnosis testing feeling very grateful that someone else could see Milo beyond his verbal and social delays. It's very difficult getting judged in Target for the tantrums your 3 year old throws when you, as the parent, know that it's only because he's not comprehending what you're asking him to do. To have someone else see Milo the way that we do as parents was truly special.
Going forward, Milo will be in an intensive ABA therapy summer program that is tailored towards helping his verbal and social delays. We saw a lot of progress when he was in the preschool therapy during the last 8 weeks of the school year, so we're excited to see how he progresses with a more intense program.
If I'm being truly honest, writing this all out and sharing it has been one of the harder decisions I've made in recent years. I'm trying to balance keeping Milo's personal life private and wanting to share our struggle for our sake as well as those who may be in a similar boat. There's also that constant feeling of guilt that's settled in my stomach since the assessment that makes talking about this difficult. I wonder if I'm alone in blaming myself for a kid's diagnosis. Did I give Milo Autism by making a mistake on the self-reported questionnaires? Did I drink too much Diet Coke while pregnant with him? He did get sunburned once as a 2 year old - did that do it? It's been a very difficult pill to swallow that as a parent, I can't meet all of my son's needs. Logically, I understand that many people work at raising one child, but in my heart it feels like I'm farming Milo out to people to "fix him". There are days where I'd like to go back to not knowing, but then there are days filled with tantrums that make me so thankful I can drop him off to therapy (and then immediately guilty for feeling glad about that). There's guilt for not spending enough time with him during the day, and not WANTING to spend time with him after 30 tantrums in an hour. There's guilt for feeling like I'm not giving my girls the attention they need. There's guilt for dropping the ball in callings, friends' lives, and as a wife because I'm simply exhausted. There's guilt for not being up to speed in politics because my brain is overflowing with testing acronyms, ASD theories & therapies, and potentially benefitting diets.
But then there are also extreme wins that bring me to tears. Milo told me unprompted that he loved me the other day which has happened twice to my memory. He said, "I think it's broken" when I attempted to fix his Hot Wheels car, showing proper pronoun use. He sang along to Katy Perry's "Roar" in the car with perfect timing. He announced he was sharing as he gave Livvy a train. He sang Daniel Tiger's "stop and listen to stay safe!" before crossing a road.
His quirks make him easy: I gave him a potty-training book and he studied it for 3 days then potty-trained himself; we've never had to use pull-ups. He's methodical and intense. He hates messes and loves to clean up. He studies books and entertains himself for hours on end. He remembers everything he's read or seen.
His quirks make him hard: very few people understand him unless you're living in our house because he speaks like the Transformer Bumblebee, piecing together clips from songs, books, and TV shows to make a sentence. Turning off a TV show is an ORDEAL. As is checking out of a store. He rarely shows empathy for other people which makes teaching about others' feelings hard.
We are very new to this journey and the word "Autism" still feels like an ill-fitting shoe. Our day to day life hasn't really changed pre-diagnosis and post-diagnosis. Milo is still Milo. We just have some idea as to what's going on in his head now. While it's been hard to wrap my head around, our overall sense has been one of relief; we can help Milo now and have very specific areas we can focus on to help him become more age-appropriately developed.
Never did I ever think we'd be parents of a kid who has special needs but here we are. It's been a humbling experience but we're ready for it as much as we can be!
Milo grabbed my hand and led me up the stairs. "It's lost in space!!" he cried, pulling at my arms, leading me into his room. I had no idea what he was talking about. "What in the world does 'lost in space' mean?" I wondered. He's growing more frantic and there's nothing I can do to help. Milo started looking for something all around his room, repeating "lost in space!" in between tears. Tearing apart his bed, throwing the books and toys off the shelf.
Then I got it.
Two days ago we had watched a Magic School Bus episode about the solar system and the whole class cried out, "We're lost in space!". Maybe Milo was using this to communicate he needs help looking for something? What was he playing with recently? A car? A truck? So I asked him, "Is your toy gone?" Relief and understanding showed up on his face. I'd interpreted correctly. We found the red corvette. This wasn't the first time I've had to think outside the box when trying to understand Milo. It was just the final straw that confirmed my feeling that we should have his speech assessed.
The day after Kyle started his new job, we had Milo assessed specifically for speech through our school district. We had simply grown weary of wondering if Milo's speech was delayed, so to settle our fears, we decided to just test him and see. We were anticipating that the results would show a slight speech delay, then we'd get him into therapy for a bit, and all would be good.
The first assessment was for verbal and social skills, and the results weren't that great. Milo tested pretty low for those two areas, which prompted the assessors to have us come back for gross and fine motor skills testing to make sure they weren't missing anything. We came back and the results for those weren't great either. We walked away from the assessment qualifying for therapy in all 4 categories through our school district, and with a "92% chance of Autism" note on our paperwork.
To say we were stunned is a little bit of an understatement. Autism isn't new to Kyle or I; we have seen it in both sides of our family. We were both well-versed in the common markers of it: not making eye contact, preference to being alone, extreme fascination with unusual things, sensory/texture sensitivities. Milo doesn't have any of these things, or at least the extremes we were used to, so the results shocked us and it made me feel awful for not catching it sooner.
We debated for a few days on the pros and cons of getting an official diagnosis. We were concerned about Milo getting labeled which would lead him to being held back or treated differently, inadvertently delaying him even more. We didn't know how serious his case was; would he be "normal" after a few weeks of this therapy? Ultimately we settled on getting an official diagnosis for a myriad of reasons, but mainly because it would open the most doors to get him the best treatments.
I called over 20 different neuropsychologists in Utah and the earliest appointment I could make was 9 months out; but through my aunt we had a connection to a neuropsychologist in Washington who was willing to fast track our appointment to the end of May. Milo and I flew up there and he was tested.
The results of the testing were shocking and validating. Our neuropsych confirmed that Milo's Autism isn't the kind that you can diagnose on sight; there are some categories where he clearly doesn't qualify as Autistic, but then there are two categories (verbal and social) that he definitely does fall under the Autism spectrum. Our neuropsych said he'd call it a "soft diagnosis". He gave Milo a nonverbal IQ test, through which we learned that he's a bona fide genius. His pattern recognition and matching skills are at an 8 year old level; his visual comprehension is in the 97th percentile. Kyle and I have always known Milo was good at puzzles and patterns but this was jaw-dropping information. Through the IQ test we also learned that Milo has a very difficult time with language skills, particularly receptive language; he is well below age level for verbal comprehension.
Overall, we left our diagnosis testing feeling very grateful that someone else could see Milo beyond his verbal and social delays. It's very difficult getting judged in Target for the tantrums your 3 year old throws when you, as the parent, know that it's only because he's not comprehending what you're asking him to do. To have someone else see Milo the way that we do as parents was truly special.
Going forward, Milo will be in an intensive ABA therapy summer program that is tailored towards helping his verbal and social delays. We saw a lot of progress when he was in the preschool therapy during the last 8 weeks of the school year, so we're excited to see how he progresses with a more intense program.
If I'm being truly honest, writing this all out and sharing it has been one of the harder decisions I've made in recent years. I'm trying to balance keeping Milo's personal life private and wanting to share our struggle for our sake as well as those who may be in a similar boat. There's also that constant feeling of guilt that's settled in my stomach since the assessment that makes talking about this difficult. I wonder if I'm alone in blaming myself for a kid's diagnosis. Did I give Milo Autism by making a mistake on the self-reported questionnaires? Did I drink too much Diet Coke while pregnant with him? He did get sunburned once as a 2 year old - did that do it? It's been a very difficult pill to swallow that as a parent, I can't meet all of my son's needs. Logically, I understand that many people work at raising one child, but in my heart it feels like I'm farming Milo out to people to "fix him". There are days where I'd like to go back to not knowing, but then there are days filled with tantrums that make me so thankful I can drop him off to therapy (and then immediately guilty for feeling glad about that). There's guilt for not spending enough time with him during the day, and not WANTING to spend time with him after 30 tantrums in an hour. There's guilt for feeling like I'm not giving my girls the attention they need. There's guilt for dropping the ball in callings, friends' lives, and as a wife because I'm simply exhausted. There's guilt for not being up to speed in politics because my brain is overflowing with testing acronyms, ASD theories & therapies, and potentially benefitting diets.
But then there are also extreme wins that bring me to tears. Milo told me unprompted that he loved me the other day which has happened twice to my memory. He said, "I think it's broken" when I attempted to fix his Hot Wheels car, showing proper pronoun use. He sang along to Katy Perry's "Roar" in the car with perfect timing. He announced he was sharing as he gave Livvy a train. He sang Daniel Tiger's "stop and listen to stay safe!" before crossing a road.
His quirks make him easy: I gave him a potty-training book and he studied it for 3 days then potty-trained himself; we've never had to use pull-ups. He's methodical and intense. He hates messes and loves to clean up. He studies books and entertains himself for hours on end. He remembers everything he's read or seen.
His quirks make him hard: very few people understand him unless you're living in our house because he speaks like the Transformer Bumblebee, piecing together clips from songs, books, and TV shows to make a sentence. Turning off a TV show is an ORDEAL. As is checking out of a store. He rarely shows empathy for other people which makes teaching about others' feelings hard.
We are very new to this journey and the word "Autism" still feels like an ill-fitting shoe. Our day to day life hasn't really changed pre-diagnosis and post-diagnosis. Milo is still Milo. We just have some idea as to what's going on in his head now. While it's been hard to wrap my head around, our overall sense has been one of relief; we can help Milo now and have very specific areas we can focus on to help him become more age-appropriately developed.
Never did I ever think we'd be parents of a kid who has special needs but here we are. It's been a humbling experience but we're ready for it as much as we can be!
