The snake in the garden of special needs parenting

Archer Matthias  2/6/13 :)

I knew something was different about Archer.

I couldn't quite put my finger on it, but he was just kind of - odd? It was very subtle in most cases; I would think it was strange that, as a baby, he would say a word for the first time and then never say it again. There was no real resource online for that kind of thing. You could google all day and find a hundred pages referencing children who are not speaking by a certain age, and the importance of hitting that milestone, as well as the age at which you should bring your concern to your doctor. That didn't quite fit Archer, though. He would say words from time to time, and even use language beyond his years it seemed. Because of this, many people assured me that it was not at all abnormal.

"He will talk when he wants to!"

"He's too smart, that's the problem."

"I had a brother/aunt/cousin/friend who did that as a baby, and they are fine now."

"It's because his siblings talk for him. He will grow out of it eventually."

Eventually Archer did in fact begin speaking in a {mostly} normal capacity. For the record, his first real words that he repeated and used consistently were "Sam Sparks" and "taco-dile," because he was obsessed with Cloudy With a Chance of Meatballs.

 There were many odd things he did, or didn't do, that seemed to stretch on for years. As soon as he would overcome one instance of his seemingly abnormal behavior, two or three more alarming traits would pop up in its place. Over and over, I brought these details to the attention of friends and family members only to be told it was all normal. I knew better though. Once I had pushed myself out of my utter denial, I knew that the culmination of all these bizarre instances were indicative of something that would change the course of all of our lives in many ways.

I still, from time to time, go back and forth about it all. Am I 100% certain that Archer is autistic? The short answer is YES. He is autistic. Since learning more about what autism is, its genetic prevalence, and what it looks like, I can see that Archer is not the only one. I'm on the spectrum, as is Rowan, possibly Jericho, and without a doubt, Griffin.
I knew what I was looking at when Griffin was born. He began to exhibit very unique behavior from birth! When I say "unique behavior" I am not referring to simple quirks. I am talking about things that do not align with developmental normalcy.
In order to say with utmost certainty that something is developmentally abnormal, you have to factor in one huge red flag - and it's one that gets steamrolled and ignored more than any other.

Mother's intuition.

Mothers are the first to notice when something is "off" about their child. It's actually been proven that mothers correctly diagnose their own children sooner and more often than pediatricians!

Parents beat clinicians detecting autism in infants

I believe the biggest reason for this is that the signs of autism that are mostly on the radar for professionals lack one important attribute: motivation. Any child can certainly display any sign of autism for any reason, but it's the reason behind it that makes it significant. If you have a child that is constantly displaying signs of anger, it could be because they are very smart, or very stubborn; on the other hand, they could be lacking understanding of their surroundings which increases frustration. Some children are just inherently picky eaters, while some children will literally vomit when they experience certain textures. The answer to why a child does these things is absolutely more likely to be guessed at correctly by a mother rather than a doctor or relative. After all, we started getting to know this tiny person from the minute they began to exist. We learned their personality from the inside for nine months before anyone even knew what they looked like. There is no comparison for anyone to "know" our baby like we, as mothers, do.

The hardest thing about the input from our circle is that every single person is genuinely trying to help. Settling the fears of a mother who questions her child's behavior is the least that anyone can do. No one is sitting there hoping that a child actually is special needs but they can convince the mother not to seek a diagnosis! Unfortunately the only purpose that is usually served by well-meaning people who tout the normalcy of your child is that you end up doubting yourself. I personally saw a trend that if I were to tell people around me outright that I thought Archer was autistic, it would be a negative response and everyone would think I was wrong. After all, they assumed I was wrong about all the traits he had already displayed. If they couldn't see those things, surely they wouldn't see that he is, in fact, on the spectrum. It's a tough line to walk, but I don't need to walk it a second time.

By the time Griffin was only a month old, I already had an overwhelming suspicion that he was on the spectrum. I'm sure that seems laughable to most people whose children are strictly neurotypical. Nevertheless, his quirks were tangible and overtly apparent in many situations for extended periods of time. As an infant, he had a strong aversion to breastfeeding. He also wouldn't sleep in our bed with us, which is likely partially due to reflux but not entirely. Over all, he just seemed extremely hesitant to fully relax and feel comfort being snuggled up to me! As a long-time co-sleeper, I was perplexed.  He made no eye contact with me while breastfeeding. He didn't smile for a really long time compared to what I had seen in my other children.  And the most telling of all? These weird little things that struck me as odd just kept adding up - and none of them really went away. Sure, he eventually started smiling, and making eye contact, and even sleeping in our bed more readily.

Still, the nature of the delays evolved as he got older and was expected to hit various milestones.

He is still not talking and won't give kisses. He makes a funny puckering face to get a laugh out of us, but he doesn't quite grasp how to lean in and give the big sloppy kisses that babies give around 6-7 months old (most of my kids started doing it at 3-4 months).
Ultimately, it's not so much the late talking. More than anything, it's the combination of traits - some are subtle, some are not. When I say he doesn't say "mama" or "dada" at one year old, it seems like a minor detail. Some kids don't say those words until later. But when you compare it to my other 6 children, they were all speaking very readily long before this point. Within a few weeks of uttering their first, "mama," each of my babies would gaze lovingly into my eyes and address me with that title. They knew that mama meant me, and it was very obvious. That's not even the whole story though. When you factor in all of Griffin's speech irregularities, it paints a clearer picture of the situation. He doesn't babble the way babies are expected to babble. He won't try to make complicated sounds, and he doesn't string together varying consonants. If you watch him closely (which I do, because I find it fascinating how many of these traits he presents) you can tell that he doesn't quite grasp the turn-taking involved in a conversation. He can mimic sounds, but he doesn't understand (or he simply refuses) to repeat them in context later. He growls, grunts, and shrieks a lot. You can see it often in the videos I post of him! He is constantly trying to communicate with us using grunts. Most people will look at that and say it's normal, because he is still trying to communicate; but the subtle abnormality there is that a neurotypical baby will very quickly pick up on the fact that we are not speaking in grunts and shrieks! They will adapt their language abilities drastically in a short period of time. Griffin simply won't adapt. He has been trying to communicate with us the exact same way for more than 6 months, either unaware or uncaring that we are all using complex speech and we don't know what he wants when he just yells open-mouthed at us.
He didn't respond to his own name for a very long time, but does respond whenever someone shouts, "popcorn." Because of this, he has earned the nickname "Popcorn" which the kids find absolutely hilarious; I, however, do no find it amusing.
The most telling part of all of this is when you look at what he can do. He is very capable physically, as evidenced by his climbing, his early walking, and things like adjusting the pacifier to go in his mouth correctly (which he started doing quite a while ago). So why doesn't he clap while we are playing clapping games? Why have I caught him three times now, staring at the television and clapping discreetly to himself in solitude?

I know exactly why; because he is autistic, and I am ecstatic that he is. Each of my kids is an amazing and unique blessing, and I wouldn't trade them (or their remarkable little brains!) for anything in the world. That means that I have every intention of embracing them for who they are, whether they are neurotypical, special needs, stubborn, smart, athletic, melancholy, silly, serious, or anything in between.




Being a special needs parent is lonely in many regards, and that loneliness begins before you ever realize that your child is special.

The following is a hilarious and occasionally horrifying timeline of Archer that I compiled for this blog post. Take from it whatever you will, but I can look through it and just shake my head, wondering how I ever doubted myself...

10/29/13: "My littlest guy is sick and he absolutely HATES taking medicine :/ So every dose of Ibuprofen seems like I'm force-feeding an angry 24-pound gorilla."

 10/30/13: "Changing Archer's diaper is like opening a buried treasure chest because you never know what's going to be inside. There are always stickers and wads of hair. Today there was a feather."

10/31/13: "Well... It's 6 a.m. here and no one is up but me and Archer. He got mad because i opened a Dr Pepper to take some ibuprofen and i wouldn't let him have a drink. So now he is laying behind me in bed screaming without stopping and kicking me in the back. My quietest baby has become the worst tempered monster."

 11/12/13: "I'm not sure what's wrong with him but he does this a lot."

 

 11/28/13: "Fat little baby got his first thanksgiving food and those deviled eggs made him AAANGRY! #phlegmatic #turkey #thanksgiving"

 

12/21/13: "Eating toilet paper..."

 

12/28/14: "Can someone tell my 1 year old that he doesn't HAVE to sleep naked?"

 1/12/15: "Every time I ask Archer what the baby's name is, he insists it's "sandwich." But, since he is 1, he says "sammich."

 12/2015: These were a few adventures that occurred in a very short amount of time, but are an adequate representation of life with Archer ALL THE TIME. 

 2/20/16: "We got family pictures done today. Archer pulled a full "Sadness" and went limp. We had to drag him. He refused to stand up for pictures. It was humiliating."

 6/27/16: "I need help. Archer (3) is so out of control. We walk on eggshells around him because he's just volatile. Nothing works. I've tried talking, spanking, timeouts... He gets more and more hysterical until he is literally just screaming and flailing. Like if I try to do timeout, he will just go limp. I've gone through pretty much every weapon in my arsenal. And now with my brother and sister in law here, they also don't know what to do with him. What else is there??"

 7/4/16: "Two different people told me today that they think Archer is autistic. I'm so hesitant about that, because I've seen so many kids get labeled that way - just like when A.D.D. was the popular diagnosis. The scary thing is that I can totally see how someone would think that. But where do you draw the line between thinking your child's behaviors are related to their temperament and thinking they might actually have a mental disorder? Especially for someone who is hesitant to diagnose? Sorry this is such a weird random post from me..."

 8/30/16: "So Archer's 'evaluation' was a total bust. It was such a joke. They checked his physical development basically, which is right on track but really did nothing to check the things I'm really concerned with - which are things I filled out as being concerned with in the paperwork! It's frustrating. They told me he just needs more structure like a preschool and he will probably "act up" less. She said it would be a good idea because I probably need a break from him."

 11/20/16: "Well I'm obviously failing as a parent.
Archer (3) just walked through the house, punching each other kid in the stomach.
When I asked him why he did it he said, "I just hate everyone."

 12/6/16: "Archer is insisting that Santa is bringing him a POISON DART FROG for Christmas.
I have never promised him a poison dart frog, obviously, and we don't teach Santa. Where does he get this stuff?!"

3/16/17:  "He eats nothing but peanut butter sandwiches and popcorn (which he now makes on his own). But he also has to get out an extra pack of popcorn and loudly drum it while his other popcorn is cooking.. Cause he said "it sounds like popcorn." It's not loud and obnoxious AT ALL."

4/13/17:  "Please tell me archer is not the ONLY 4 year old who consistently tears his food into tiny pieces (usually a peanut butter sandwich) and lines it up and calls it a train?"

 4/15/17: "Archer just informed us that he can sweep in Spanish"

4/24/117: "Pray for Archer please. All the kids did great with me leaving, and Archer seemed fine until I actually said goodbye. He freaked out and is having a really hard time. He just started crying and wouldn't look at me or say anything. He's coming up in two weeks but he's just really having a hard time"

 6/12/17:

Archer walks up as I'm putting peanut butter in my shake... "I need the peanut butter." "Well I'm using it..." "That's 600 calories.. " "What??! No it isn't....?" *Archer sighs* "Mom just give me the peanut butter."

5/30/17:  "I'm sooooooo over Archer screaming about EVERYTHING."

7/10/17: "We're waiting to be seen at the clinic for Archer. They are probably just getting us a referral today. So far he has bugged everyone by shouting, climbed on and behind the chairs, told me a ridiculous story about how his arms are a bridge to the edge of the universe... And opened one of the windows in the clinic and I can't figure out how to shut it. We've been here for ten minutes. Lol"

7/14/17:  I'm so tired of hearing about how everything is MY fault and Archer is normal and I'm obviously doing something wrong.

7/17/17: "Apparently Archer being social for once is bugging people. A dad at the park with his daughter was trying to get Archer to go away. Archer wasn't even doing anything but talking to them :/
Trust me dude, your kids are WAAYY more annoying than mine!"

(I wish I could remember which A-hole ^^this^^ was!!)

7/24/17: "Archer just Sheldoned his way into a swing.
He says "I want to use that swing."
Little girl says "no, I'm using it right now."
Archer says, "Okay. I'll wait." And stands six inches from her and stares. She awkwardly got up and left, and he got the swing. 🤣🤣"

8/14/17: "Archer, taste the beans I made!"
*Archer tastes beans*
"How are they?"
"A little spicy and unpredictable." 😂

9/20/17: "Archer has NO social decorum. He has turned a corner from being antisocial and now he is extremely off-putting and in-your-face to every child he meets 🤣🤣
It's kind of embarrassing but I can't help but laugh. I feel the need to apologize to a lot of people whose toddlers he tries to make play with him 😂"

11/27/17:  "Y'all. Archer CARES about the baby 😍😍 I have waited almost FIVE years to see this behavior. I'm astounded. I'm overwhelmed. And he still hates Jericho :/ But you can't win them all!"


1/24/18: "5 year old CONSISTENTLY putting their shoes on the wrong feet. Normal at this age? Or a little questionable?"

2/6/18:  "This guy! Scowling in all his newborn pics😂 In hindsight, that's so Archer. We thought we had parenting all figured out - But seriously, this kid really rocked our world in so many ways. Can he really be FIVE years old?"

12/18/18: "Sometimes, I forget about Archer's spectrum status. And then he does something like trying to kiss and play with Ender while he is OBVIOUSLY asleep 😑
Yep. There's one of those lovely ASD idiosyncrasies 🤨🤨"



12/24/18: "My older kids are so NOT into Santa 😂 Jericho, however, was very excited and had been talking about Santa for weeks (despite knowing he's not real... It's kind of weird). And Archer....oh, my Archer. He decided that this would be a good time to pretend to be a robot no matter what I said 😒 So.. yeah. Oh well "

11/12/19:  "Recommendations for meltdowns? Archie just punched Rowan in the throat 😫 I'm not very effective when he does this and I think we need to look into new calming techniques (products) that he can do on his own 🤔
It's tough because he hates everything and I'm not sure what we could set up for him that would help..."

2/18/20: 

Ender Dean (2) petting Ripley:
"Awww. Dis not Bon-yuh. Dis Nippy!"
(This is not Vanya, this is Ripley)
Archer (7) pointing at Brock:
"Mom, I like the brown dog the best."
We have literally had Brock for Archer's entirely life 🤦

Archer pulls a lint ball out of his pocket and asks what it is. 
I am sitting here trying to explain in the simplest way: "little bits of fabric that get stuck..."
He looks at me so confused, and I feel like he isn't understanding anything I am saying. 
Finally, he says, verbatim, "So it's clothing particles that won't fit through my pocket?" in this super condescending tone...

When you are done denying your kid has special needs