I remember taking Blake in for a sick appointment when he was around two years old. We didn’t see our regular doctor that day, but saw one we had seen a few times before. In the appointment Blake was alert, playful, and laughing at all of the doctor’s silly faces as he poked and prodded him to check his ears, nose and throat. Despite his happy disposition, he ended up having double ear infections, which was a very common occurrence for him. We were one ear infection away from having the tubes in his ear discussion, but we never had to go that route, and he doesn’t get them anymore, thankfully.
With a prescription in hand, I gathered my things together; diaper bag, snacks, toys, books, and the rest of my Mary Poppins bag of entertainment tricks. The doctor was imitating silly voices and laughing with him as I packed, then he paused, looked at me and said, “You’ll never have to worry about him being autistic. He’s way too social for that! What a special boy. He’s so happy!”
It was an interesting topic to mention seemingly out of nowhere but I remember smiling and sighing with relief. I don’t know why I sighed in relief. It wasn’t as if this worry was looming over me, but the thought had crossed my mind before. Not in a panicky kind of way. At the time I didn’t see anything from Blake that was too out of the ordinary. I think every parent wrestles with questions in the back of their mind. Is my child meeting their milestones? Are they developing at the rate they should? Autism disorders seem to be on the rise, or at least the topic and discussions are. But, nothing at the moment, in this moment, being in that doctor’s office with a two year old, particularly pressed me to worry specifically about “Autism” for my own child. He met all of his milestones right on time. Nothing was ever delayed. At this point headbanging was the only oddity about him, and the doctors assured me every time it was nothing.
I’ve often thought about the doctor’s words over the years.
“You’ll never have to worry about him being autistic. He’s way too social for that! What a special boy. He’s so happy!”
It was true, Blake was a happy baby once we got passed all the colic, GERD, and milk allergy diagnosis and treatments. To help the colic I bounced on a yoga ball for 6 + hours a day. He was on Zantac for the GERD until he was over a year old. And he had an Epi pen for a severe milk allergy. The craziness subsided around 5-6 months old and his milk allergy went away at 15 months. The truth was, despite it all, he loved to laugh and people often commented to us how happy he was.
A lot has happened since we walked into that sick appointment at 2 years old. I’ve gone from hearing my child could never be autistic because he’s so happy, makes eye contact and is playful with strangers, to a boy who is shy, still happy but has a lot of emotions and frustration, doesn’t make eye contact with people he isn’t comfortable with, can be socially awkward, has sensory issues, seeks and needs just the right amount of sensory input, still headbangs, is easily overwhelmed, and stutters.
As usual, the stuttering comes and goes but it’s been around for a while now, and kids are noticing. He doesn’t get upset when they make comments but he does get sad. He knows he speaks differently, but he really does have the best attitude about it. If you ask him about talking differently he will tell you he knows he talks different than others and that it takes him more time to say things sometimes. We just continue to encourage him.
He struggles in school socially and behaviorally. He’s not a bad kid at all. He isn’t mean to other kids, but he’s easily frustrated, hyper, stubborn, and any kind of change in routine is difficult. He struggles with peer relationships and working with others in school, it seems.
Thankfully, he has some amazing teachers and a great team of people at school who are helping me to help him.
Last week we met with the Developmental Pediatrician, Dr. F..
I made this appointment 6 months ago and the first they could get me in was November, so I took it. At this point we’d already been to numerous professionals who said that he is on the spectrum. It was a 3 hour appointment where the doctor observed him as he played, interacted with him, and had me answer some questions about his history. I brought reports from all his therapists and other doctors, and she carefully looked them over.
She explained everything to me. She answered all my questions.
His headbanging beginning at just a few months old was a telling sign. This was his way of providing sensory input. The neurologist had already told me this, but she confirmed. Because I was told for so long by his doctors that it was “normal” and because he’s now 5, it’s become ingrained in his nighttime sleep routine, both putting himself to sleep and during REM sleep. She said it’s going to be incredibly difficult to break him of this habit. My heart sank in annoyance of people who didn’t listen to me for years.
He has 3 scars on his head from it.
He hums constantly, mostly in a car or when playing. But it’s the same tune over and over again. He also will repeat words or phrases numerous times over, randomly. I never thought much of it because I just thought he liked a specific tune, or he would take a few words and make a tune out of them and repeat them. But it seems it’s more than that. She heard him doing this in the office and said it was stimming (a stimulatory behavior).
He’s always played with his toys at eye level, and at a very young age. He still does this, and she was able to observe it in the office. I knew going in this was a sign of autism after some research I’d done previously, but I never understood why, and never knew it’s actually autistic stimming, particularly with eye level playing, it’s visual stimming.
Severely autistic kids will give the side glance and this is their visual stim. Visual stimming is actually a processing disorder and it’s believed to have something to do with information not properly traveling through the neurons in the brain, creating a visual impairment where they want to see things from a different perspective to process information. It’s believed this ties in with language delays. I’m not exactly sure how all of this works, and how it’s tied to other delays, but I plan on researching it and finding out more.
Speaking of language delays, two other professionals have said to me that Blake has a language delay, which I thought was crazy at first. He’s always had a high vocabulary, is very articulate, and makes interesting connections to things. If he’s ever been strong in anything, it’s been speaking.
Dr. F diagnosed him with Pragmatic Language Disorder. I was taken aback, again, by hearing from a 3rd professional, whose job is to specifically identify development, that he has any kind of language delay. Surely, these people were not seeing the same child I was?
Pragmatic Language Disorder is known as a communication impairment, often among kids on the spectrum. It’s also known as a social communication disorder. Basically, anyone who has this impairment has difficulty with social cues, responding appropriately in social settings, can be very blunt (offensive), and struggle or are unable to have “back and forth” conversations. She was asking me if I ever saw any issues with this and at first I told her no. We have conversations with Blake all the time! He seems fine! Normal!
She asked if he ever talked about his school day when we asked, to which I responded, “Does any kid?”
(This is why we usually ask the “What was the best/worst part of your day?” questions.)
But she challenged me to listen to him throughout our appointment. Before I “agreed” to this diagnosis I wanted to give myself time. (I’ve learned to advocate for my child over the years and take information as a grain of salt). So, I took some time and I observed and listened to him in conversation on the way home. Michael and I paid close attention to dinner conversations that night, and it all became too clear.
He will not go back and forth in social conversations unless it’s about a topic he’s interested in or he’s initiated.
He doesn’t ever answer questions about himself, or if he does, it’s only a few words, and if you ask a follow up question he will no longer speak with you, or (seemingly) ignore you.
I always thought he was was just already bored with the conversation and wanted to move on.
He doesn’t respond to us a lot of the time. I thought it was a choice of “selective hearing” or just being his stubborn-self. Ha!
I still don’t understand why he doesn’t respond. She tried to explain it to me. She said it’s not by choice, it has nothing to do with stubborness or lack of hearing, rather, genuinely not knowing how to respond.
This is one of the aspects I have trouble processing myself. You just answer the question! But, I guess it’s more than that.
I have a lot to learn and that I want to learn to better help B.
I’ll be honest, I never even recognized that he doesn’t make eye contact with people. This isn’t a problem with us, and with people he knows well. Isn’t every kid shy? Others close to me have confirmed that he does struggle with this.
Amazing how blind you can be to things sometimes. Dr. F. noticed his lack of eye contact immediately and throughout our time together.
He’s an awkward kid socially. When he gets around a lot of people he gets very silly and very hyper. She explained this was part sensory overload, part Pragmatic Language Disorder. We kept his recent birthday party very small because I’ve witnessed him at other parties and he just doesn’t do well. He has meltdowns, and it’s always an emotional rollercoaster.
We attended a summer birthday party where all the kids were playing in the water on a bounce house water slide. I usually have to keep an eye on Blake in these situations because he will approach me 1,000 times with a meltdown, question, or concern. I make him take care of all of his own problems, like approaching other kids, but always make myself available to coach him. When wanting to play with another kid, Blake ran up to him, slapped him on the back, got really close to his face and yelled “Do you want to play with me?!”
I think he freaked the other kid out.
He ended up responding to Blake saying he didn’t want to play with him.
I don’t blame him.
I probably would’ve said the same thing if someone came up to me, slapped me and demanded in my face that I play with him.
That wasn’t Blake’s intention of course, but that’s exactly how it came out.
Then, the kids were getting small plastic cups of water and dumping them on one another. B wanted to join in so he went and got a one gallon bucket, filled it with water, and dumped it on another kid’s head. The other boy ran crying to his mom and pointing at Blake who had his head down and was walking toward me crying. He knew something went wrong.
These are constant struggles in big social situations. He wants to fit in. It’s like he knows how, but doesn’t know how appropriately.
These are constant struggles in big social situations. He wants to fit in. It’s like he knows how, but doesn’t know how appropriately.
He’s very blunt and has no problem telling you or anyone else what he thinks. He has no idea sometimes why we just break out in laughter at his honesty, when he’s clearly not trying to be funny.
We were outside playing with our neighbor earlier this week and the girl was crying. Blake ran up to her mom and asked, “Do you have those headphones I can wear? She’s crying too loud and I don’t want to hear it anymore.” We just had to laugh. He looked at us and seemed confused why we thought it was funny. He really wanted those headphones!
I think this is a good quality, honesty, and I also know that all kids do this-regardless of any disorder or diagnosis. Honesty is an enduring quality of many kids. But it’s also just one of the many added factors that contributes to an ASD diagnosis it seems.
At school he received “needs improvement” in all areas for his progress report, except verbalizes emotions and feelings. He struggles working with others and in social situations, a big learning component of VPK!
So, after the Pragmatic Language Disorder diagnosis, and after spending some time thinking about it, the diagnosis makes perfect sense to Michael and I.
I thought we were just going in for our official ASD diagnosis, but received the PLD. Not that I’m complaining. I want him to get all the services he needs.
Dr. F.. asked me at what point I noticed something was different about him. I had to think about that for a bit. I don’t believe there was ever a big moment that smacked me in the face. Rather, it was just a bunch of little parts along the way. I get why the logo for autism is a puzzle piece. It’s a bunch of little tiny pieces that come together to form a big picture. At least that’s what it is for me. I don’t know the true meaning behind it.
People have said to me, “Oh my kid doesn’t make eye contact. That’s normal.” Or, “My son is sensitive to noises. A lot of kids are.” Or, “Every kid has to be told what to do in social situations. They aren’t born knowing how to communicate.”
To that I say, yes. You’re right! Every kid has a struggle.
I appreciate people making me feel better and letting me know it’s all a part of a normal development. I know they’re just trying to help.
But each individual part of that is just a part of the bigger picture. The puzzle.
We walked out of Dr. F’s office with the following official diagnoses and a request to receive services for an IEP (Individual Education Plan) at school.
- Autism Spectrum Disorder
- Speech Fluency Impairment-Stuttering
- Pragmatic Language Delay
Services Requested for an IEP:
- Speech Therapy (Stuttering)
- Language Therapy (PLD)
- Social Skills Training
Really, it’s Asperger’s, but it’s all the same now. It’s ASD.
She also said he shows all the signs of ADHD but I told her that wasn’t a priority for me right now because I think it’s all secondary to what we currently have. She agreed. Most ASD kids are ADHD. Besides, I’m not willing to treat a 5 year old with any sort of prescription meds for ADHD. He’s FIVE! And a boy!
She also said we need to keep a close eye out on the epileptic seizure activity report we received from the EEG this summer, because it’s common with autistic kids and there’s a high percentage the “activity” will turn into actual seizures. Hopefully this won’t happen. But if it does, we will just deal with it.
Dr. F. also said to get him in ABA Therapy. So, will also be having an ABA Therapist come to our home and visit him at school. She will help with keeping his day running smoothly, and just all around be a great resource for him. And us.
After discussions and questions, it was apparent too that the difficulties we had with him as a baby were all signs that have lead us to where we are now. These kids tend to be colic and have food allergies more than the average child.
We have a committee meeting next month to sit down with a team of people at school (the one I also work at) to discuss eligibility requirements and services for his IEP.
I made a binder full of all the doctor reports over the years, just to keep my head straight and in the game should I need to refer back to any paperwork. Doctors don’t communicate with one another so I’m usually the one carrying paperwork back and forth so I needed a way to keep it organized. It was important that I came up with a catchy cover for it, because that’s just how I roll.
It’s not his “Diagnosis Binder”. It’s not his “ASD” binder. It’s not his “Medical binder.”
It’s so much more than that!
It’s been such a journey. When I look back at how we got here, it’s pretty remarkable. God really put people in my life to guide us in the direction. It’s been slow moving, but I think it was all purposeful. I needed time to process all of this. I didn’t need someone to smack me in the face with an ASD diagnosis without having time for it to marinate. I needed years! And that’s exactly what God granted me.
I process things over time by thinking and researching. All the research, mentors, therapists, doctors, and questions have lead me on a path to understanding and acceptance.
I’m not sure what the doctor was thinking when he made that comment 3 years ago. I also don’t know what has changed, if anything. Or why. I can’t over analyze it. In a way I’m grateful he mentioned it. It was our beginning.
I walked out of our appointment relieved. Not screaming “YAY! My kid is ASD!”, but relief because this is what we needed to help B. Now that it’s official, our insurance will accept and give us more services. They stopped paying for OT and Speech, and now that it’s formally on paper, we won’t be paying a ton of money anymore!
He’s perfect and just the way God made him. There’s always a purpose for everything.
He’s still obsessed with cars. He could spend hours building cars out of Legos! Maybe one day he’ll be a car engineer.
Right now I’m just enjoying the 5-year old boy walking around in his Batman cape. My little superhero.
He’s on the
Autism Awesome Spectrum Disorder. He stutters. He has a language delay.
And this is what makes Blake awesome.
5 thoughts on “What Makes Blake Awesome”
((Hugs)) I’m glad you’ll be able to get better help (insurance, etc) now that you have a diagnosis.
I didn’t know the side glance/look was visual stimming or linked to speech delay! My daughter (29 months) does this and her speech is extremely delayed. Didn’t know there was a connection so thanks for mentioning that as I’ll research it! Her pediatrician says give the autism diagnosis three months and the speech therapist says watch for the next six months…but I already know. Ya know? She is my fourth and I know she’s on the spectrum.
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I had no idea side glances were visual stimming either, except from what I’d read. Blake doesn’t do that at all, but I knew it just from observing other kids.
There are so many different types of autism, which is why they call it the spectrum. The saying, “If you’ve met a kid with autism then you’ve met a kid with autism” is so true-because they’re all so different!
I understand your doc and the speech therapist wanting to wait. I know many kids who are presented with delays but they want to wait just to be sure. IT’s good that you’re at least noticing it now, that way if something does come of it then you aren’t blindsighted. Mental preparation is key to sanity. Ha!
As far as the stimming being related to delayed speech, that came up in some research that I’d done. I would quote it here but I’ve researched it so much that I don’t even know exactly where I got it from. It was a study, done by a neurologist (or some profession of that nature) who found a link. I’m not sure it’s really going to be in published journals just yet. But, sometimes studies are all we have. 🙂
Is there anything else you’ve noticed about her?
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The doctor and therapist were the ones to bring it up because of many signs of autism presenting in her behavior but then said we will wait a bit. I’m fine with that as I’m not planning to pursue a diagnosis unless down the road a specific therapist or treatment is unavailable to us without one. We homeschool so there won’t be an issue about it at her “school.” Lol
The main thing about Elizabeth is that she is in her own world most of the time and it’s a matter of her letting us in, which we work at every day. 🙂 It’s hard to describe without writing a ton. It’s been DIFFICULT since this time last year (she started changing at 17months). 😦
I’m sure if I thought about it I could find a specific turning point for us, but I can also see evidence from early on.
Hope you get some answers!