Well, I don't! Horrors! :) But I can write one! :)
To give some background, Josiah was born exactly five years and six days after Jeff and I got married. He was very much wanted and very eagerly anticipated, and I loved each day he grew inside me. The pregnancy was largely (always an appropriate adjective to use in conjunction with pregnancy!) ;-) uneventful, as was the delivery. His birth story is told here in detail.
In August of 2002, when Josiah was two months old, we went to Israel for a vacation; and in January of the following year, we moved there when Josiah was seven months old. We were exceedingly happy to be living again in the country where we met (as students at Jerusalem University College, in the spring of 1996), and we looked forward to the adventures that would come our way as a young family of three.
And then the trouble began.
Well, not trouble exactly. From hindsight, we can see that what we went through was no big deal; but at the time, it was challenging, frustrating, and scary. You see, Josiah stopped hitting the milestones that characterized a normal baby. We had taken the book What to Expect the First Year along with us when we moved to Israel, and I--like many first-time moms--eagerly read each chapter to make sure I was doing everything right as a mom and Josiah was doing everything right as a baby. :)
But then, he wasn't. The things that the book said a baby at a particular stage might possibly be doing were most certainly things that Josiah was not doing, and even the things that the book said a baby would definitely, absolutely, no-doubt-about-it be doing (OK, they didn't actually phrase it that way, but that's how I read it!) were not always things that Josiah could do. For example, I can't remember exactly when the book said a baby should have the pincer grasp--LONG before 12 months, at least--but Josiah didn't have that ability firmly in place enough to pick up a piece of food and put it in his mouth until just a couple days before his first birthday. I still recall how we let Jeff's mom babysit 10-month-old Josiah while we went out (this was during a trip back to San Diego for the sad reason of Jeff's dad's death); and when we returned from our outing, she told us how she had put some Cheerios (Josiah LOVED Cheerios) out on the tray in front of him, but he didn't eat any. I had neglected to tell her that he couldn't pick up Cheerios and get them in his mouth yet!
More alarming, however, was his complete inability to move himself around. Not only was he not walking, but he was not crawling, nor was he scooting, nor was he rolling*, nor was he getting himself into a sitting position. Whichever place we put him, whatever position we put him in was where he stayed.
* To be precise, I recorded in his baby book that he first turned over from tummy to back on Feb. 1, 2003 and from back to tummy on April 6, 2003, but he didn't use rolling to really get from one place to another.
Looking back, I think, "Well, that certainly made life easier for me!" ;-) While it's true that mobility does bring a whole new set of challenges to parents of a toddler, I didn't appreciate the ease of life that Josiah's lack of mobility brought to us because I felt in my spirit that something wasn't right, but I didn't know what it was.
I wish I could remember more of the details of all of this, because I know my foggy memory means that I won't get this recorded just right. But as best as I can remember, my concerns were pooh-poohed and put-off a little bit, and I was told to wait until Josiah turned a year, and then see how things were. So I did, and June 2003 brought no significant change in his abilities. It was at this point that the medical personnel at Tipat Halav, the clinic for mothers and babies that we went to in Israel, began to pay attention and helped us start on the dizzying journey of figuring out what was going on with Josiah.
After a decade, most of the steps of that journey are shrouded in mental mist; but a few details stand out to me even now. I remember...
...how much I'd been reading about the value of early intervention. Every delay made me feel somewhat frantic, thinking that a window of time in which we could best help Josiah was closing. I didn't want to sit around and wait and see how Josiah was in a few months time; I wanted help NOW.
I remember...
...Josiah being examined by a wide variety of doctors. Besides the expected pediatrician, he was also seen by a neurologist, by a child psychologist, and by a team of physical therapists; and maybe I've forgotten some? I remember being surprised that he needed to be seen by a psychologist, because when I imagined psychologists at work, I pictured couches with patients reclining on them, pouring out their woes to impassive professionals with notebooks in hand--not exactly something that Josiah could be doing. :)
I remember...
...how HUGE the language barrier felt during this time and how HARD the cultural differences seemed to be. Even though Jeff and I were studying Hebrew and beginning to feel fairly comfortable with spoken, conversational Hebrew, the words I was learning in my Hebrew Ulpan were almost never the medical terms that the health professionals were using. Like many, many people in Israel, they spoke English, too--with varying degrees of fluency--and of course, we were grateful for that. But there was still A LOT of communication that was either being missed by us or being apprehended only with much difficulty. Something as simple as reading a report from a doctor's appointment was very nearly impossible for us because understanding that level of Hebrew was something we just couldn't do.
I remember...
...that some appointments would revolve around "them" (the doctors, etc.) watching Josiah and I play together, and I, with my first-time-mom, foreigner-in-this-land insecurity, felt like I wasn't playing correctly with him. Maybe our home environment wasn't stimulating enough for him. Maybe we should have gotten blocks, and I should have helped him learn to stack them. Maybe this... Maybe that... Imagine, a loving, involved, devoted mom feeling like she wasn't doing a good enough job playing with her adored child! That was me.
I remember...
...racking my brain, trying to figure out what we might have done to cause or contribute to Josiah's delays. Was it because we had swaddled him before putting him to bed when he was a baby? Maybe if he had not been swaddled, he would have exercised his arms and legs more and would have been further along in those skills. Was it because we didn't give him enough time to lay on the floor and play that way? It's true that we had a walker that he enjoyed being in (I understand the dangers of walkers, but many of those dangers simply didn't exist in our tiny apartment in Israel, so we felt fine with him using it), and maybe that confinement slowed his progress? Was it because I wasn't consistent enough with tummy time with him? The questions went on and on.
I remember...
...the guilt. Having a delayed child certainly was an intense introduction to the infamous Mommy Guilt that likely hits all moms from time to time. At times, I felt pretty sure that I must have done something to mess him up--this child that I loved more than life itself. Another aspect of this Mommy Guilt kicked in when people--usually truly caring people--would suggest various reasons for his delay ("You carry him too much!") and various remedies ("Lay him down on the floor, away from his toys, and let him get frustrated enough to move himself to get them. DON'T get them for him!"), some of which I was not comfortable with at all. I still remember a very good friend of ours, a burly Russian who was trained in martial arts, pick up Josiah and "toss" him around in the manner in which he played with his own two daughters, showing us how we could help strengthen Josiah's muscles. I very nearly had a heart attack. ;-) It makes me chuckle now; but at the time, I thought, "Oh my goodness. There's no way I could do that to Josiah; that doesn't even look right! But maybe I should be doing that. Maybe that's the key to improving his movement..." And so the guilt continued.
I remember...
...Jeff coming home late one day from his morning Ulpan (Hebrew language learning) class. With a sober demeanor and serious voice, he told me that his teacher had asked him to stay after class; and when he did, she, knowing some of our challenges with Josiah, shared with him her experience with her son who is autistic. Her main point, which quite frankly terrified me, was that we needed to be more aggressive with the health professionals so we could get the truth from them, because they, as she said, wouldn't tell us the whole truth if they didn't think we could handle it. Up until that point, no one had mentioned the "A" word; but after that conversation, Jeff and I began doing more research and, in particular, found a fairly thorough checklist for autism indicators. When we began marking off the ones that Josiah we had, we discovered that, although he didn't have nearly all of them, he clearly did have some of them. To feel like there was a huge hammer of bad news hanging over our heads that our doctors were waiting to lower until they felt like we were strong enough was absolutely horrible.
I remember...
...wrestling with God in our tiny kitchen in our Tel Aviv apartment, maybe the afternoon after Jeff's conversation with his teacher. To think of Josiah having autism was not only painful in terms of what the future might hold for him, but also felt devastating because of the entire wiping away of dreams that I held so dear to my heart. These are some of the thoughts I remember running through my head during that struggle to surrender to God's will: IF Josiah had autism, we would probably never have other children, because of the genetic risk......IF Josiah had autism, there would be SO MANY of the "normal" childhood pleasures that we would miss entirely...IF Josiah had autism, he would almost certainly never marry...IF Josiah had autism, we would never experience the joy of being grandparents... Recalling those thoughts from the vantage point of 2014 makes my struggle on that day (and not just that day, but also others following it) seem laughable; but it was a real struggle, a genuine Abraham-on-Mount-Moriah-to-sacrifice-Isaac kind of struggle.
I remember...
...telling some classmates in my Ulpan class (I took classes in the evenings, and Jeff took in the mornings, so we could share the care of Josiah) about the issues we were facing; and one evening when Jeff had brought Josiah to the park that was very close to the Ulpan, Ariel, an Orthodox Jewish man who had recently immigrated to Israel from New York (or New Jersey, I can't remember) walked with me to the park during one of our breaks so he could meet Jeff and see Josiah in person. Jeff was pushing Josiah on a swing, something Josiah LOVED; and after Ariel spent a little time observing Josiah and talking with Jeff, we walked back to class. On the way, he said, with conviction in his voice, "Your son is not autistic." Now Ariel wasn't any kind of a doctor--I think banking was his profession--but he felt very confident that Josiah didn't have autism because of the way he made good eye contact. "He connects with people," was what Ariel said, and my heart was reassured.
I remember...
...Jeff going with me to an appointment we had with the child psychologist, shortly after the talk with his Hebrew teacher. We were determined to press the psychologist to tell us the truth; we would not leave there without some solid, straightforward answers. I still remember the relief that rushed in upon me when the dear, kind lady said, "Oh no, there's no way your son is autistic. That's not even a possibility. I would tell you if it was, but it isn't. You don't need to worry about that." I could have kissed her. ;-)
(I feel the need to add here that at the time, I didn't know very many people at all with autism; and my lack of familiarity with the condition made it seem bigger and scarier than it really is. I'm confident now that if God had seen fit to give us a firstborn with autism, His grace would have carried us through. I very much admire my friends who have children on the autism spectrum, and I've learned that autism isn't the Big Bad Monster that, at that time, I thought it was.)
I remember...
...learning a new word, the word that would put a label on this struggle we had been enduring. Hypotonia. Low muscle tone. In Josiah's case, something that he would likely grow out of...and the years since then have shown us that yes indeed, he has done just that, thank You, Lord!
I remember...
...going to physical therapy appointments with Josiah. Just getting there was always an adventure, because we didn't have a car, so I walked and pushed Josiah in a stroller. Well, that wasn't unusual, because we did that nearly everywhere we went! But we had to walk through the shouk (outdoor market) to get to the building where the physical therapy was; and depending on the time of day, the shouk could be crowded and noisy and--I'll be honest--rude! When we got to the appointments, I remember seeing other mothers with their babies and children, most (if not all) of which appeared to be in much worse condition than Josiah. It was always a good reminder to me to count my blessings. It also made me feel a little silly to even be there! There I sat, with a basically healthy child who just happened to be taking a little longer to figure out how to coordinate his muscles to crawl, walk, etc., while across from me sat a woman whose little son was dealing with truly life-altering disabilities. Humbling, to say the least. By the time we had meandered through the maze of the Israeli health care system (not to mention the maze of how to get our American insurance company to help pay for the expenses!) and had started physical therapy, it was apparent that Josiah really was going to be OK; and we, with the approval of the therapists, decided to stop his appointments after just a couple of them.
I remember...
...being told by a woman I respected very much, who had herself raised two children outside of the United States, about a friend of hers who had given birth in a South American country, I believe, and had followed the standard protocol in that country for childhood immunizations. Her child, however, did develop autism, and there was a strong suspicion that the vaccines might have been to blame--perhaps because the medical system in that country wasn't as careful as the U.S. might have been? There were lots of unsubstantiated claims in that situation; but what I took away from it was a strong caution about vaccines; and as a matter of fact, we, who had been following the standard schedule for immunizations for Josiah ever since he was born, immediately stopped getting the shots for him. It wasn't until much later, after we had returned to the States, after we had done a significant amount of reading about it, and after Josiah's development had caught up, that we went ahead and had him get any more shots. To this day, even though we let our children receive vaccinations, we follow a delayed schedule (which sometimes is a MUCH delayed schedule because of my procrastination!) ;-), largely due to our caution during those early years of Josiah's life.
I remember...
...the sweetness of victory, so to speak, when Josiah did hit milestones. When he started crawling (at 16 months, mind you)--my goodness, you'd have thought no baby had ever accomplished that feat before, the way we carried on! And walking (at 18 months)? That was a cause for trumpeting the good news from Tel Aviv all the way to California! :) To have wondered for so long if he would EVER move, and then to see him DO it...oh, it was glorious!
I remember...
...having a conversation sometime later with Jeff's mom in which she rather casually mentioned the fact that Jeff had not walked until he was 18 months old. Really?? It's entirely possible that she had told me that before, but I surely didn't remember it during those agonizing months of wondering what was wrong with Josiah. I keenly missed, during those Israel years, the reassuring presence of a grandma (or two!) to say, "Shoot, child, there's nothin' wrong with that boy! Look at him! He's just takin' his own sweet time. Don't you even think about worryin' your pretty little head about him!" ;-)
I remember...
...being amazed when David started crawling at 10 months! So early!! ;-) Well, not by anyone else's standards, but a full 6 months before his big brother had. When David didn't really launch out and start walking until 18 months (although he'd officially taken his first steps a month or so before that), we didn't feel too concerned at all. Tobin's walking came even later, at 19 months; and Shav didn't start walking until 20 months! Moriah broke the trend and learned to walk at 14 months, surprising me, for sure. But since Josiah, I've learned by experiencing what I'd previously learned only by hearing: each child has a different timetable, and the range of normal is very, very wide--a lesson that I've needed to recall at some point during the infancy and toddlerhood of each of our children, because they have all had at least one area in which they were--officially or unofficially--delayed. How kind of God to teach me that lesson right at the beginning of my years as a mother! :)
Before I close this walk down Memory Lane through a somewhat trying period of time, how about some pictures? My face breaks into a smile when I see these... :)
Davene and Josiah in Imperial Beach, CA - Nov. 5, 2002 - Josiah was not quite 5 months old.
Not too many weeks after that picture was taken, our beloved David was born, and the parenting journey started all over again. Each time around on the roller coaster called motherhood has produced its fair share of ups and downs, surprising advances and worrisome delays. But most of all, JOY.
Unspeakable!
Wow! That was a lot to live through, especially with your firstborn. Praise the Lord it was something he easily outgrew.
ReplyDeleteI thought I got some inconsiderate remarks when Paul didn't talk AT ALL until he was two years old (he only grunted, saying "Unh"). I realize that was nothing compared to all the recommendations and remarks you had to live through.
You are so right about the spectrum of normal being very wide. I hear about and see children on different places of that spectrum at times. I also work with each one of mine, who are on different places on the spectrum. Meeting their needs where they are is the key, I think.
Thanks for this post.