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Things I Wish Someone Had Told Me (Hindsight Edition)

That it might not be colic, it might actually be Sensory Processing Disorder.

I couldn’t tell you exactly when it started. Jonathan was never easy, never placid or interested in sleep. From the beginning he slept in small snatches and always woke up… troubled, maybe? I christened him Beastie one day early on; he reminded me of the start of Robert Burns poem “To a Mouse, on Turning Her Up in Her Nest with the Plough”:

Wee, sleekit, cowrin, tim’rous beastie, 
O, what a panic’s in thy breastie! 

He was my Timorous Beastie when troubled, my Ravenous Beastie when he was hungry, my Ferocious Beastie when he was, well, ferocious.

Being the dutiful mom I made sure to tell the pediatrician everything, that he was a “barfy baby” like my others, that he was a terrible sleeper and all around fussy baby. “Colic,” the doctor said, and I didn’t know any different, so, OK. He put Jonathan on a special formula and sent us on our merry way (and can I take a second to shout out for WIC? $25 a can for formula could easily wreck a one-income family. Thanks to WIC we didn’t have to go hungry to feed him).

The formula did help somewhat with the spitting up but it didn’t do a thing about the crying, the fussing, the general sense of discomfort. I told the doctor the miracle cure formula wasn’t doing the trick and he basically said, “Well, nothing else to do but tough it out.”

So we did, and I didn’t know enough to think maybe the doctor gave the wrong diagnosis. I knew what Jonathan was doing didn’t really follow what Google told me about behaviors for colicky babies. He didn’t act like his tummy hurt, he acted like his nerves were on the outside of his body. Like the world was simply too much to take in, too much to process. But maybe that’s what colic was, how did I know?

I didn’t know what else to do so I simply started trusting my instinct on what might be best for him. Dark rooms, holding him tightly, bouncing and rocking. I held him as much as I could. More often than not he slept on my chest, my arms wrapped tightly around him as I tried to shield him from the world.

He eventually grew out of the eternal discomfort and since it was in the general time frame of colic I chalked it up to that and went on my way trying to keep up with him. I put it out of my mind almost completely.

Until we realized he wasn’t talking. He made noises, sure, nothing wrong with his vocal cords, but actually talking to me, babbling and cooing communications like my others had, not at all. That led us to therapists, who asked questions and watched him play and gave us strings of letters to explain what was going on with our wee sleekit beastie. One of the strings was SPD.

From SPD Foundation:

Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”) is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.

The more I learned about SPD and the types of meltdowns it can cause the more I started looking back over my shoulder. What I was reading sounded exactly like what the first 3-4 months were like for him. I was absolutely right in thinking the world was just too much to take in. I will swear to this day he never had colic.

Sometimes I want to be pissed at the doctor, at his lack of knowledge or inclination that Jonathan might have something else going on. I want to be pissed at myself, for not digging deeper into the Internet. I want to cry when I think about how much more I could have done to help him, when I think about how it must have felt inside his skin.

Of course none of that does any good, it simply wastes time and energy and I don’t have any to spare these days. The only lesson to take from this is to trust my instinct and his actions over the word of any doctor. I’ll listen to what they have to say, I’ll look into it, but in the end the only expert I’ll listen to is my son.

By Brenda

40-something-something stay home mom, floating somewhere between traditional and strange. I’m addicted to music, making things and my computer.

9 replies on “Things I Wish Someone Had Told Me (Hindsight Edition)”

Oh, good, ’cause I was gonna say “don’t panic, but keep an eye out for autism.”

Yeah, I grew up with undiagnosed autism and some pretty gnarly sensory processing issues that no one believed me about.  You’re doing good.  Just keep believing him.

I’m still walking the line trying to figure out when and how and why I should mention his full diagnosis – sometimes it is important to mention, other times it has no more bearing than his red hair or Mick Jagger legs. This time I should have. Oops.

Thank you.

You could also factor in that a lot of doctors don’t even see it as a legit diagnosis. Which is utter BS. True, most wit these issues have other diagnosis as well, but even if it is describing a symptom set (and what is a diagnosis beyond a description of a set of symptoms? Particularly in things that the physiological cause is unknown, varied, or debatable?) it is a legit thing.

Best of luck helping him cope!

I guess that explains why the newest DSM is set to remove SPD as a stand alone diagnosis. I love how the ‘experts’ keep making shit so much harder for everyone.

(And you know, now that I think about it, his pediatrician has never once addressed the SPD. He’s all over the speech and what he sees as ‘behavior problems’, but never mentions anything else. Guess that explains a few things too)

Thank you :-D

Yeah, it’s a pretty common idea that it only manifests as part of another Dx. While it’s SUPER important that sensory issues are included in ASD diagnosis, not all people with sensory processing disorder are also Autistic. Unfortunately, some people who are autistic were given SPD dxs rather than ASD ones because of worries of freaking out parents. (There are also, believe it or not, parents whose kids *have* ASD dxs but whose parents would rather the SPD dx because of having inaccurate ideas of outcomes for Autistics.) Unfortunately the not so great solution wasn’t to just add sensory issues to asd but to also remove SPD from contention.

The speech delay might or might not be an ASD thing, but it might just be an issue with audio processing issues or something. From what I am guessing he’s just too young to say either way- age 4 is usually the big number. It doesn’t rule out ASDs if you speak before then, but it’s usually a big deal thing by then if a kid doesn’t test as deaf or HoH.

Either way, it’s going to be super tough dealing with the system and with making your home accessible to him sensory wise.

I probably should have mentioned this is serious hindsight – J will be five next month. His most recent diagnosis is ASD, SPD and ADHD.

We’ve been very lucky so far, we found an early intervention program that helped us get a handle on the speech and sensory issues. He’s moved up, from non-verbal to functionally non-verbal to delayed. The sensory stuff is still a lot of trial and error, but thank the stars for good OT’s and the internet!

 

Every time I’m over there he seems to have grown leaps and bounds. I was happily surprised to hear him say “Hi, Auntie!” when Mom and I walked through the door – he never seemed to remember our faces in the past, probably because we need to get over there more often. And I love the way he says “Noopy!” when I ask him about your puppy.

You have always had amazing instincts. I’m glad you follow them. :-*

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