Jack’s Journey…and my life as his mommy
Scattered previous entry – Overall, Jack is doing remarkably well. So much gain over the last few months. I think we have come to expect continued fantastic quick gains and really don’t want to accept stagnant periods or regressive days. I’m hard on him (in my mind) and hard on me too. Today, and yesterday, Jack’s been dealing with some kind of bug, I guess. Intermittent low fever, irritability, decreased appetite, stimming, whining instead of using words…I’m frantically trying to figure it out – teething? A bug? Yeast overgrowth? Ugh – I think I feel pressured because Mom & Dad will be here in 2 days and I SO want him to be at his best. Silly, I guess. But they see him so rarely. I just want it to be great so that they can see his progress.
Today was Rob’s last day. He’s been an integral part of this journey and Jack’s progress for the last 10 months. From a little 17 month old baby who couldn’t follow a simple direction or say a word to a sweet boy who follows simple directions, knows letters and numbers, and talks all of the time! It was hard to see Rob go – he certainly was a blessing to our family as we dealt with the overwhelming-ness of this diagnosis. So many times I cried during sessions as we talked about Jack, his future, etc. I’ll miss his guidance, but feel like I’m prepared now and armed with enough knowledge about this disorder to go forward.
The mystery is mostly solved. I am pretty sure Jack is getting his 2 yr. molars. Good news is that he had a good visit with Mom & Dad. Bad news is that the molars have yet to break the surface. This could be a long summer! Jack was really disconnected from Mom & Dad on Saturday, their first day here. It is heartbreaking to watch, as I’m sure it is also for them to endure. By Saturday evening he had warmed up a little more, especially with Dad at the pool, and by Sunday was doing normal grandkid stuff with them. Mom’s still thinking about him pushing her off the couch so she wouldn’t sit by him, though. When they got home they looked at their video tape and commented that his eye contact was quite poor. He really didn’t respond that well to them. Tough to hear. I love them for wanting to fight the fight with me, but the truth can be tough to hear outloud.
Going to attempt to begin my journal. I have a few previous entries scattered around our cluttered home, but can’t seem to get diligent enough in this effort (or many other efforts) as of late. In fact, with great intentions in hand, I spent the better part of 2 hours on the internet AGAIN. Tonight I was converting Jack’s Hair Test results to post to a bulletin board for comment. I’m so thrilled with all of his current progress. Seems that what is left after many of the other autistic-y stuff has cleared is his obvious low social skills. Eye contact and joint attention, to be most specific. So I posted to see if there was any advice for us regarding supplementation that might tackle the eye contact issue. Because sporadically it is there. We’ve seen it! For example, last night Jack played a little game with me. He was playing with his Learn Through Music Game (were back to this toy again for a jag) on the Dora cartridge. He was happily matching colored birds with their matching color nests (it is still Color Month here at the Halberts) upon request by the toy. As Scott and I sat in the playroom with Jack, he would identify one “nest” on the screen and then say the color. Then he’d look right into my eyes and say the color. I’d repeat the color and then say something like “Good job matching!”. This went on for 20 –25 exchanges! It was awesome! However, Daddy was not included in the looking game. I couldn’t believe how he was even more beautiful as I was getting that special gaze. I saw future pictures where that smiling face, staring directly into the camera, would be caught forever on film…I can dream, and hope, right?
Today we had a windfall! Scott bought 2 scratch off lottery tickets and won $100!!! And, he gave the money to me to go run “Mommy errands”. What are “Mommy errands”, you ask? Typically, they are anything you could do alone in 1/3 the time it would take to do with your two year old. Sometimes they are completely sanity saving events, like haircuts and pedicures (the pedicure part is fantasy, although I have great intentions to actually go one day) and other times they are quick errands that would completely obliterate the good mood of the best two year old, like purchasing makeup or shopping for shoes! And with $100 burning up my cool less-mommyish GAP jeans’ pocket, I headed out. First stop, decaf coffee. Afternoon and caffeinated beverages do not mix for this girl! Then off for the simple stuff. The pedicure crossed my mind several times, but then I decided I could buy 2 months of the “Brain” vitamin for Jack at the health food store. Such are the demons an autism mom wrestles with. So many expenses involved in this conquest, and we are fortunate enough to try many. But the spending nags me constantly. What will we do next year when/if Metro cuts back on funding for ABA? Metro won’t pay for his Autism-Only Speech Teacher – can we actually consider seeing her privately at $80/hr? He sees her at 2/week now! That’s $8300 per year! Yikes! Deep breathing taking place now…one day at a time. What is all of this wonderful progress worth???
This was a welling-up moment this weekend…I was tearful. Here’s why: I decided when Jack was a baby that I would sing a special song to him that would be “his” song. I considered “Baby of Mine” by Bette Midler but never bought the cd. Couldn’t find the song online to download (it was during the Napster scandal), so, while filled with emotion and pregnancy hormones and staring endlessly at this beautiful baby boy in those first days, I created my own. Quite simple, and special, and his. Well, ours. Part of that secret mom-boy wonderment that only Mommies of little boys understand. A simple, no fuss, no hair bows or wanting to wear your shoes, kind of love. Ok, so the song goes “Goodnight, Baby; Goodnight, Baby; Goodnight, Baby; Sleep tight, sleep sweet.” Trust me, it’s yummy. I sang it a lot when he was tiny. My mom said “you should videotape yourself singing it to him!” but I couldn’t bring myself to do it. Vanity, pride, embarrassment, whatever. Sang it quite a lot. Then, when Jack turned 14 – 15 mo., he didn’t want singing or reading. AT ALL. PERIOD. Was convinced that we would want him to participate, do hand gestures, point to something in the book, I don’t know. But there was no reading/singing in the rocker. So, the song went by the wayside. Now, at 2 yrs. old, a sweet boy has emerged that likes to rock. And, most recently, SING! Tonight I put him in his crib. He grabbed his blanket and pacie and said “Yight Yight…Please…Rock”. What’s a mommy to do? Of course, we rocked. Then I said, would you sing the “Goodnight” song? And he did….”guhnight, bay-beee…..guhnight, bay-beeee…..guhnight, bay-beee…guhnight, bay-beeeeeee!” Even Scott had a big impish grin on his face. Those are moments you parent for. And my plan worked…it’s OUR song, even if only for the moment. So, I taped him. And, ruled by the toddler laws he lives by, he had a rather sloppy performance on the second go round, but I heard it as though he was singing it perfectly, like the angel that he is. Sleep sweet, my angel. Mommy loves you.
If only I could “think” my entry into some type of mental Dictaphone and I could print it out effortlessly later…who knows, that just may be a reality in 2057 or so. Wonder if people years ago sat around wishing for something faster than a stagecoach or cooler than a ceiling fan. Probably so.
Seems that the trick to this condition, from a parent’s perspective, is riding the daily emotional rollercoaster without needing to get off or losing your lunch. Yesterday I was feeling a bit down. Noticing how little Jack actually says TO us. Also, there seems to be so much verbal stimming of the reciting of vocabulary words or counting. We’re sitting at the table, I’m asking him if he wants more of something, and he’s looking out the window saying 7,8,9,10! Those are the tough moments. Moments like this morning, watching him in Sunday School, sitting there like a big boy, getting distracted like any other two year old, but noticing the sweet little 2.5 yr. old girl next to him say “I’d better move my (stuffed) animals out of the way!” in clear as day English during the Noah’s Ark lesson while my sweet baby keeps saying “el-uh-fant” over and over while looking at the ark, almost under his breath (one that a mommy’s ear is constantly tuned in to but a sweet old teacher’s ear can’t hear amongst the crowd) as she pulls out every other animal first. Hmm, seems obvious to me why us mommies get so overprotective. A few moments with anyone else, including well meaning grandparents and daddies incorrectly interpreting his mumbles and approximations and I swear he won’t leave my sight until he’s fluent in French! Ok, so I really mean English, but it’s a fun fantasy!
But those moments are peppered with beautiful, eye-welling, heart pushing against your ribcage, L-O-V-E moments. Every parent has them, of this I’m sure. But, I suspect that only parents of Developmentally Delayed or otherwise challenged children find these moments in the simplest of places. Today I walked into Jack’s room after his nap. I had heard him on the monitor. He was definitely awake. But, unusually available right at the time of his first chatter, I went in a bit earlier than usual. He didn’t move. Eyes were open and in my general direction. I dropped some clothes in his basket and proceeded to quietly leave. No words spoken. Just a test, the results of which I couldn’t imagine. Perhaps he’d cry, scream, not notice? As I began to shut the door, the sweetest sound: “Vovvy!” he cried (his version of Mommy). The simple things. To hear your child, at two years old, speak your name, something that rarely happens in this house unprompted.
We played in his room for a while and then he headed down to the den, presumably to watch a video. Am I too easy on him, I began to think? Does he have to ask for much? Or do I just anticipate his needs? When WAS the last time he had to ask for a drink? Yes, this is why I’m exhausted each morning when I wake! The brain is constantly torturing me like this! So, I sat down on the stairs leading to the den. He happily hopped up on the couch, faced the tv and said “Vatch!” Then he waited. I moved a bit farther down the stairs, so I’d be in view, and turned my head away. No eye contact. And, beautifully, he ran over, made quick eye contact and said “Vatch!” and ran back over to the couch. Test completed. You have passed. My worries subside for a little while.
Baby feelings are ever so slightly creeping in. Not even baby feelings, per se, but “family” feelings. I want to have a family. I KNOW that I already have a family, but I want a bigger family. While I don’t see us agreeing to a third without the assistance of some failed birth control or an empty bottle of wine, the possibility, especially prior to the diagnosis, was more like probability for a second. A sibling for our sweet baby boy. He, the big brother, little brother or bothersome sister in tow. But, odd as it sounds, we feel so blessed by Jack’s condition. He is doing so well, is such a sweet and loving child, that we have good reason to believe that we will be able to “recover” him (and I use that term loosely). I guess I mean that I feel today that he will be able to lead an independent life. Perhaps he will look forward to an education without an aide. He’ll be able to communicate with us and those around him. But the fear of the unknown is a mighty tool of the devil. What if the next child is again afflicted? What if the condition is more severe? How would we live with our decision to increase our family? I try not to think of these things too much. And I want to know Scott’s opinion in all of this, because one yes equals a “no” on this issue. So, tonight I gently slid the question out in the open. Almost underhanded, which is only my style in the stickiest of situations. “I don’t want Jack to be our only child, do you?” I timidly stated. I got the ever so classic Scott response, the “shrug”, followed by an “I don’t know”. The door is cracked open just a fraction, ladies and gentlemen, and light is coming through. This topic is tabled for a month much colder than this one.
I have neglected my crafty-motherly duties for months. I haven’t touched Jack’s scrapbook. I now have 3 stuffed storage boxes brimming with photos of every awesome and ordinary moment of his 2.25 years. And, to date, I have about 9 scrapbook layouts completed to prove what a wonderful life it has been. First I was busy, working part time at my quasi-career as a Pampered Chef Director while caring for a new little tyke, then it was the onset of therapy last summer, along with the part time work and wifely responsibilities. Then, it was grief. As his diagnosis became a looming, speeding freight train headed directly for us in the dead of night, I wasn’t sure HOW to scrapbook and journal what we were experiencing. And, honestly, I still don’t. Do I take photos of his sweet team of therapists, giving their time and talents to a little boy that barely acknowledges their existence, and include progress reports, or do I gloss over this grueling time in our lives in hopes of “not dwelling on the dark years” when we make it to the “other” side of this nightmare, God willing? Do I comment on the fact that I have quite an extensive collection of “candids”, since my sweet boy will not smile at the camera? If at the end of the journey, I have a perfectly healthy, world dictated “normal” little 7 year old in regular school, no longer meeting the criteria for Autism, will we tell it like it is or spare him the gory details? My guess, knowing me, is that it will just be part of his existence, like adoption is for me, or Scott’s father’s death is for him. Life is not without bumps (or chasms) in the road.
Dawn of a Breakthrough? Yesterday was an ordinary Saturday here. After running a few errands alone in the a.m. while Jack was in therapy, we settled into our Saturday routine. I fixed lunch for Jack and me (Daddy always manages to eat breakfast around 10, lunch around 3 and then joins us for dinner) and then we played together while Scott began his yard duties under a bright summer sun. I noticed something that humored me…Jack didn’t want me to leave the room. He received a new Learn Through Music game cartridge this week, and I think he’s unsure of some of the sounds it makes (like a rocket ship blasting off). So, he’d come and find me and say “Help”. I’d come into the playroom and he’d sit down with the game. If I left the room, he would fuss and cry “help”. How nice to be wanted! Then, while playing, he would be sure that we were touching. At one point, he was laying on me, playing from my lap. An autistic mother’s dream! Later, I set up the pool on the deck and filled it with water. Jack played in and around the pool while I sat on a patio chair and read a book. Ok, I didn’t get much reading done, but my intentions were there! Instead, I responded to Jack, who constantly was making comments to me. He’d pick up a bathtub letter and look at me and say “B”, followed by “hurray!”. He’d wait for me to say “hurray” too. What a fun game. Lots of eye contact out there on the deck. You’d have thought we were just ordinary folks enjoying an ordinary Saturday. It was anything BUT! My baby was looking at me…lots!!! I put him down for his nap and noticed that he was as quiet as a churchmouse. Asleep in 5-10 minutes, I suspect. We’ve grown so accustomed to hearing him chatter on and on, oftentimes for 30 minutes or more! Scott and I both commented on how engaged he was all day and how much he seemed to care whether or not we were in his environment.
Friday night, while playing on the computer, I counted 16 eye connections with me in 15 minutes! Wow! Then yesterday, while watching “Do the Alphabet” DVD, a record setting 26 times in 15 minutes!!! If he keeps this up I’m going to start to expect it!
Then today we head to church. Jack walks into his class and shouts “Hi!” before his teachers could even acknowledge his presence! This is new…then on to the worship service. He was quite chatty in the service, as usual, but sat quite well for being just 2 and a quarter years old! (I keep reminding myself of this fact). With 15 minutes left in the service, he looks to his left and sees “Mr. John” seated next to me. He climbs over me and right into John’s arms. John cuddled him for 4 or 5 minutes. Jack looked like he just wanted John to hug on him for a bit. This is the most outward sign of affection I’ve ever seen Jack display to someone other than Scott or me. You could tell that John was smitten. Jack even gave him a kiss before squirming back to his seat. I was proud. The little things…
For the record, I have started this week Houston’s AFP-Peptizide enzyme in place of the Kirkman Complete DPPIV and am up to 1 capsule at each meal. No problems, that we’ve noticed. Additionally, Thursday I started adding 25 mg. DMAE into his a.m. cocktail. This would be in addition to the 20 mg. he is receiving of DMAE in his vitamin, which he takes most days. Could one or the other be contributing to the joint attention and/or eye contact increase? Time will tell.
One step forward, two steps back…that seems to be the saying and today it seems to hold true. I’ve noticed Jack’s “scripting” seems to be hitting an all time high. I first noticed it enough to mention it to Jack’s speech therapist on Thursday. I hear him in the morning counting, saying his ABC’s and a bunch of inflected jargon that I’m betting is his repertoire of video/computer game dialogue. If only he spoke clearly, I think he’d confirm my fears. Today, however, it was crazy! After his 1.25 hr “power” nap, I put him in the swing as we waited for his third ABA session of the day. He got on a counting jag that was of epic proportions. Lisa came in during his 10th round (or so) of 1 – 10 and raised her eyebrows. Her face said “uh oh”, but she said nothing. Then, after his session was over, as we went to the door to say our mandatory “goodbye”, he started counting again. I actually could NOT interrupt his counting to get him to successfully say goodbye! It was freakish. I was very disturbed. It was like he was possessed or wasn’t there. And, to top it off, we had to go immediately to the paint store before it closed, so I got his shoes and hurried him to the car. All the way into the garage and car, the counting continued. I tried screaming into his ear. It did not phase him. By the time we were heading home from the paint store (where he did not count, but instead looked around and picked out colors to recite) my eyes had welled up with tears. I was near a breaking point. It was now 6 p and dinner wasn’t even started. The house is in shambles from the painting (which I secretly hope is the culprit of today’s craziness – paint fumes!) and I have PMS (legitimately) to top it all off. My stomach is now churning. Ugh. Luckily, these days are few and far between. Good thing, or I’d be filling out my own application to Bellevue! So, here’s the fun game I get to play tonight: What is causing the Scripting? Answers: a) increase of DMAE b) switch to HNI’s AFP-Peptizide from Kirkman’s DPPIV c) paint fumes d) changeover from Epsom Salt Baths to less frequent use of Cream e) absolutely nothing that we’ve done. And I wonder why I have dreams where Jack’s pediatrician has a meeting with me where he tells me I am an OVERINVOLVED mother and I have problems! Then we chase his moving car down the street that contains his children and mine and no driver!
7/28/04Officially – a really GOOD day! I did a lot of praying last night. I’m asking for peace; turning over the tough stuff for God to handle, since he’s much better at it anyway. Got up feeling pretty good. Kitchen is freshly painted and the granny wallpaper is gone! Jack ate left over French toast sticks without a fuss for breakfast. Weather was just gorgeous – 68 degrees this morning (in July)! Jack had therapy and I buzzed around the house, cleaning up after the painter. Then we hopped in the car and drove over to the grocery for some quick shopping. Got home and set up for lunch for Jack & me on the porch! Put kid music on out there, set up the booster seat, and we had a lunch “date”. Things went so well that I got out the camera and, lo and behold, got 4 outstanding photos of Jack, looking straight at the camera! How absolutely fantastic! That alone would have made for a good day.
Also, his scripting seems to be lessening. Perhaps it was the DMAE, which I have removed, or his initial reaction to the new enzyme is balancing out. Whatever the reason, it seems a little better. Then this evening we all went out to eat with Scott’s new boss and had a great time. Jack was a doll baby. I told him we’d have Chicken & Fries at the restaurant (which I had to bake and bring warmed due to the diet), and when we sat down I gave him some fruit. He said, “chicken, fries”. Funny. After he was finished eating, he played with his sticker book, placing about 5 stickers down the length of one arm. Once we got home, however, he seemed to be in some sort of pain – when he went potty he whimpered, then screamed a little afterward, even as I was changing him, as though his bottom hurt. This seemed to subside until bedtime, when he got real whimpery again. I put him to bed and went downstairs. A few minutes later he was screaming, so I went in and rocked him for a while. Then I put him back in the crib and left. 5 minutes later he is screaming (quietly) again, then stops, then says very clearly “Vovvy!” (his version of Mommy). He said it twice! I bolted up the stairs and “rescued” him from the night monsters and rocked him until I could hear his heavy patterned breathing and watch the rise and fall of his little chest. I tucked him delicately into his crib and tiptoed out, with a grin as big as Texas. My baby called for me today. July 28. A really GOOD day.