I have been bent and broken, but - I hope - into a better shape. --Charles Dickens
Continued from….whatever the last blog post was called. “The Next Chapter” or something. Well, this is the Next Next Chapter.
It never ceases to amaze me what humans can adapt to. The frog in boiling water analogy probably puts it best--the issues with Gabriel arouse so gradually, we didn’t realize the sum total until we were firmly entrenched in it.
Our sweet son had been with us already for a year and a half. He wasn’t sleeping and would not give up that bottle or pacifier, but babies gained skill in their own time, you couldn’t rush it. And yeah, he was pretty sensitive to sound. But we kept the house so quiet all the time, he was probably not used to it! As for the social things--the lack of eye contact or meaningful play with other kids at daycare or his sister...well, I had read that girls were more socially motivated and boys more motor-oriented. Plus, no one would exactly argue that I was the friendliest little butterfly. Yeah, that makes sense. Nothing to worry about.
You also have to remember that at that time, Michael and I were wholly and fully nuts. We hadn’t slept--really slept--at this point for quite a while, and we were suffering for it.
Most can relate to the tiredness thing; we have all gone through stints of insomnia for one reason or another. Anyone with a child has fallen victim to a two-hour feeding schedule or an all-night vigil for a vomiting kid. Sacrificing your oh-so-important rest is just one of many you will make for your baby. When I talk about the dazed confusion of a exhaustion-addled mind, chances are that you are nodding along going, “Been there”.
We had adapted to the difficult circumstance; it was time to turn the heat up.
Gabriel started walking around 17 months old; just on the line of when I should be concerned, but not over quite yet.Emerald was a late walker too, so it wasn’t such a big deal. What always struck me is that he learned to climb before he learned to walk. Was that normal? The baby gate didn’t keep him out of anything--he just crawled faster and powered his way through. Barriers were scaled as though they were nonexistent. Putting him in the pack-n-play was only effective if he wanted to be in there; if he did not, he would throw his weight against the side until it tumped over and he could crawl away.
His crawl was an odd (but not so unusual to be concerning) bear crawl where he scuttled along on his hands and the tips of his toes. Almost freaky to see, like a spider crab creeping across the carpet with almost alarming speed.
There was a complete lack of regard for his own personal safety. He couldn’t be left anywhere unattended--he performed belly flops out of his crib, sat atop bookshelves, launched himself off playground equipment.
I remember at the time, my mom teased me, “haven’t you figured out how to take a shower while they are napping yet?” It was good-natured and probably instructional, but I wanted to take my toddler by the feet and hit her with it. I was never in a playful or teasing mood at the time; my nerves were jangled from having a near-constantly crying child that was determinedly trying to injure himself that hadn’t slept since he was a fetus. My main past-times were crying, yelling, and constantly chasing said child around to prevent a catastrophe.
Other parents would helpfully say, “You know, you can’t take your eye off of them for one minute,” while they watched me clean up a mess Gabe had just made. Thanks Mad-Eye Moody, for the advice; now either grab a broom or piss off because I am about five seconds from tearing you a new one.
Gabriel started going to the Parent’s Day Out program on Mondays and Wednesdays when he was 9 months old, the same that Emerald attended. We were getting more incident reports--he spilled the bottle warmer water all over himself, he dove headfirst out of the high chair, pulled a bucket of toys down on his face. Ha ha, boys will be boys, right?
The director of the daycare called us for a sit down meeting. Sitting in those tiny plastic chairs in a circle, we prayed for Gabriel and for this meeting, that God gave them the right words to help Gabe. What a weird thing to pray, I thought.
Gabe’s teacher, a kind, earnest woman, began to describe problem behaviors that she had noticed. He was struggling to walk, barely able to make it more than a few steps before he fell down. That didn’t stop him from trying to run away, though; he threw the door open and took off the moment the opportunity arose.
She described something she called “staring episodes”. She mentioned absence seizures, where the individual just seems to clock out for a few brief moments. Gabriel’s eyes would slide out of focus, glaze over. During this time, he was unresponsive to stimuli--she would clap her hands in front of his face or snap her fingers, touch his arm, say his name. Nothing would pull him back to reality until he pulled himself back.
We had noticed this behavior at home; we just attributed it to him being a deep in thought. Thank you for bringing this to our attention, we will certainly take him to a neurologist. -Nod nod- Absolutely, thank you.
That is when they dropped the million dollar word:
Autism.
….I wish I could describe how I felt in that moment. All the cliches come to mind--floor out from under you, breath knocked out of you. It felt like everything and nothing. Surreal. Clarifying. Dreamlike.
It felt like the universe held up a giant sign that said “DUH!!!”
How did I miss this? I mean, if you were to paint a picture of classic autism, Gabe is the perfect candidate. The aversion to touch and sound, the sleeplessness, recklessness, avoiding eye contact, the perpetual motion, lack of speech. Everything clicked so neatly and beautifully into place that I was shell-shocked for days.
What...what was I going to do with a special needs child?
Forget for a moment that, strictly speaking, I had already had one for eighteen months. This felt like a death sentence that things were not going to get better. It was a theft of hope, because the prognosis for autism...it is one big, life-sized question mark. You have no idea where it is going to go, what it is going to look like. Hell, you don’t even know what you are supposed to do. If you get strep throat, you get an antibiotic, done and done. You have autism? Welllllll…..
To Michael, who was somewhat of a layperson when it came to autism before this, the term "retarded" kept floating to mind. As offensive as some of us will find that now, the terms went hand-in-hand for so long that it is an understandable connection to make. What was his quality of life going to look like? What sort of impairments are we talking about here? How we were we possibly going to care for a child with a disability we knew so little about?
I was still enrolled in school at this time. I don’t know who I thought I was fooling, attempting school that semester. I’m not the type to fail a test, but I hadn’t gone to class since the meeting at the daycare, and I failed in a glorious blaze of humiliation. Below my score, the teacher had written in red “see me after class”.
We sat in the hallway and he said he didn’t know what was going on with me, but he was there if I needed to talk. I said nothing, my eyes filled with tears. I couldn’t say anything, because if I did, then this was real. My son was autistic and my dreams of being a doctor were officially dead. I did not return to that class for the rest of the semester, an easily-avoided F that haunts me.
Our pediatrician at the time, Dr. Striping, was great. He didn’t want to talk about autism until Gabe was older--he was old-school in that regard--but he was happy to write referrals to whoever we wanted to see.
With medicaid and many insurances, you have to get a referral from your primary care physician to get in to a specialist, a fact that has stalled more than a few parents as they have sought answers.
If you have a good pediatrician and speak with knowledge and confidence, you get your referrals to get evaluated by therapists, to see specialists, get tests done. If you are unlucky, have a pediatrician that is stingier with referring out, if you don’t insist in the right way...it can be a lot more frustrating of an experience. Personally, from this side of the bench, I really can’t understand why a doctor would deny the request honestly. That has been my line as I serenely smile: “What does it hurt to check?”
Should ECI comes out and see there is no need, they will say that and you will be denied services. They have such heavy caseloads and get paid salary, not hourly or by the patient, that they will never fudge the numbers on a kid “just to get paid”.
A friend of mine--Stacy, who did continuity of care for a home-therapy company--put it best when she said, “You don’t take a sore throat to a speech therapist and expect a diagnosis; why would you have a general practitioner evaluate a speech delay?” And she is absolutely right. Doctors, send it out. What exactly is it going to hurt?
Obviously, I realize there is another side to this, and if you would like to read more from the other perspective here is an excellent article: http://health.usnews.com/health-news/patient-advice/articles/2016-04-07/whats-behind-that-medical-referral
Off my soapbox, I promise. Sorry.
Anyway, we got lucky. Excellent physician that we loved very much. Even though he was not personally concerned, he knew that we were and he was happy to send us to whoever we needed to see to get peace of mind. Dr Stripling said that the staring episodes needed to be evaluated by a pediatric neurologist; the other symptoms we saw, they could be attributed to difficulty hearing. He got us in with an allergist/immunologist to do some testing, see if his considerable allergies were causing chronic sinus infections that would interfere with his hearing. We also got one for ECI to start evaluations, for an ENT, and an audiologist. Finally--and he warned us that it would take months to get in--he faxed over a referral to a developmental pediatrician.
The first specialist we saw was Dr. Brown, the neurologist. Potential seizures are serious business that cannot wait. This was October of 2010. Dr. Brown ordered a “sleep deprived EEG”. The nurse explained in the pre-appointment phone call that we would be required to keep him up all the night before to perform the test.
Michael stayed up with me that night so he could drive us the next day. It was honestly harder for us to stay awake than it was to keep Gabe up. We just watched movies and prayed for daylight.
Once in the car at 6 in the morning, Gabriel started to relax and drift off. Michael would stop suddenly and jerk him awake because we couldn’t let him fall asleep now--it would ruin the results of the test and we would have to reschedule, do this horrible thing again another night. At one point, he was nodding off and I had to pinch his little baby leg to startle him. He and I cried all the rest of the way there, but we made it.
There were wires attached all over his head and he looked so small and fragile, just a baby connected to a machine. He got to sleep through the test; we were glad he was getting the rest he so needed, but we were also aware what this meant: we ourselves would not get to rest when we got home. It was okay. As long as our little guy was taken care of.
After forty-five minutes, they peeled all the little sensors off. His hair was absolutely wild from having the things stuck all over his head. They sent us home with the promise they would call within the week with the results.
With the first specialist down and four more to go, we took our now well-rested and wakeful child back home.
--Andie
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