Yesterday at Wal-Mart I saw the cutest kids' haircutting kit. It included clippers, scissors, a comb and a cape. It boasted to be quieter and less scary (which was a plus in my book!!) so I snatched it up and put it in the cart.
Jack has an awful cold, so our Easter plans were canceled. We packed boxes and cleaned out the garage (for the upcoming move) while Jack napped all afternoon. Jason went to visit family while Jack and I stayed home. I had the brilliant idea that I was going to give Jack a hair cut! I've seen daddy do it several times so i thought -- a piece of cake, right?
Well, I chose the wrong setting and Jack is next to bald. I wanted to throw up. I am so upset. You can see his scalp...his shunt protrudes out and you can see his SKIN! I was in the bathtub with Jack when Jason got home and he gasped when he saw him! I feel so horrible. I KNOW everyone's going to comment...and of course we see every therapist and of course there's school...I want to cry! In fact, I already have.
I won't even post pictures, that's how bad it is. I am wearing a hat on him until it grows back. Luckily his hair seems to grow quickly so hopefully it'll start to fill in in a few weeks...
Well, it certainly was an interesting holiday weekend...
Edited to add....
Thanks guys. In the big picture having no hair is okay I guess...LOL! I am sort of used to in now...and Jack loves to feel the prickles on his head. Daddy loves to ask Jack where his hair went...and we are getting quite a chuckle out of the whole thing. I've been labeled "Worst hairdresser in the world" and I have to agree I won't ever do it again! LOL!
Sunday, April 16, 2006
Friday, April 14, 2006
Walker!
It was so nice out yesterday! Jack and I went to visit one of my very best friends...she just got a new puppy (a little pug) and Jack had so much fun playing he didn't want to leave!
When we got home it just seemed way too nice to stay inside so we went out front and played ball on the side walk. Jack was sitting on the steps and I was throwing the ball to him...he loved it! I got a little tired of chasing the ball into the street so I asked Jack if he wanted to go for a walk with his walker. He seemed perplexed by the question because up until yesterday we've only walked around the house or at school with the walker.
Jack did an EXCELLENT job! I was too leary of letting him walk on his own because of being on the sidewalk so I had a hand on the walker at all times. We went down the block to the mailbox and back! At certain points we had to stop only because he was laughing too hard to walk at the same time...which in turn made me laugh until i had tears! We would catch our breath and continue on our way. We were heading back towards the house as daddy was getting home...he parked the car and then we all went to Friendly's for dinner. Jack sat in a booster seat (no highchair!!!) and was such a good boy!
We had an excellent day yesterday! I plan on taking him for an outside walk at least once a day!
Oh...Jack walked with the walker all over school last week. His favorite thing to do is use the walker to go over to the sink and wash his hands. He was able to stay standing and turn the water on at the same time!!! The PT was thrilled! I only wish I could have seen it!
Friday, March 24, 2006
E-Eye, E-Eye, Oh!
Well, we're up to patching Jack's right eye 8 hours a day...which is okay, but it means he'll have to wear it to school. I guess it'll be better now that he's more adjusted and the other kids probably won't pick on him...if anything they'll think it's cool!
The good news is, he's not totally convinced Jack has a visual field cut. Since he is new to Jack's case (our other PO left July 2005) he didn't see Jack when he visually neglected things on the right. Now Jack doesn't miss anything. The Dr. mentioned a new type of VEP testing done with electrodes that is in trial at the hospital. He said it should be available in 6 to 8 months and Jack would be a good candidate for this type of testing. He said it's hard (as we all know) to determine functional vision in pre-verbal children. While Jack detects things and is very accurate we still don't know how he processes higher level things and part of that will come with time. I think his hand eye coordination is amazing (for having CVI AND CP) and doesn't look too much different than his peers (other than he only uses one hand, but vision wise I mean). So it's very promising that the Dr. isn't ready to say he has a permanant field cut!!!!!!!
He gave us a prescription for sunglasses for Jack so he can have his indoor glasses and his outdoor glasses too! I asked about transition lenses and he said he doesn't think they'll be dark enough to make Jack comfortable outside. Do any of your children wear transition lenses?
He still has not ruled out surgery to correct the lazy eye/neglect/eyes turning in...so we see him back in 5 weeks for another look.
While we were at the UPC, I took Jack for bloodwork to check his medication levels...he wasn't too happy about that but they are sooooo good there it was over and done in a flash! He even got a cookie monster sticker and everything!
Just wanted to update everyone! Thanks for reading...
Sunday, March 19, 2006
Fatty McButterpants
Ever since Jack's three year check up and the weight loss we've been boosting calories like crazy this past week. Last Sunday Jack weighed 24.4 lbs and a week later Jack weighs 25.4 lbs! THAT'S AN ENTIRE POUND THIS WEEK! It's a BIG DEAL! We are very happy! Let's hope it continues!!!!
Wednesday, March 15, 2006
No More Tears...
Guess who was tear free this afternoon at school?
The stroller did the trick. I parted ways with Jack in the lobby and his teacher ushered him along with the rest of the students.
Keep up the great work Jack! We love you and are so proud of you!!!
Oh, and Jack wanted me to remind you to...
The stroller did the trick. I parted ways with Jack in the lobby and his teacher ushered him along with the rest of the students.
Keep up the great work Jack! We love you and are so proud of you!!!
Oh, and Jack wanted me to remind you to...
A Little Overwhelmed...
On Friday Jack had his 3 year check up at the pediatrician. This was supposed to be a WELL visit and it turns out Jack had a double ear infection. He was prescribed Amoxicillan...poor guy!
He lost a pound and is down to 24.5 lbs...and to think we were ALMOST at 26 lbs! He's fallen off the charts again. The ped asked if the feeding team has ever mentioned a feeding tube. My heart sank. They have never mentioned a feeding tube and I think at this stage Jack takes soooo much orally that I'd be hesitent to get one. We see the feeding clinic at the end of April...and I hope to get him on higher calorie formula called Resource and see a better gain.
The great news is, he IS growing...he's 37.5 inches at that's 50 PERCENT!!!!! He's never been that high on the charts ever!!! WOO HOO!!! He's my tall, lean, string bean!
She did write us a prescription for diapers. In PA if your child is disabled and is over three years old, medical assistance will pay for diapers. That will help so much because we're no where near ready for potty training.
One thing that sort of ticked me off is I brought the form for disabled parking permission and she gave me some trouble with it. She said his neurologist or developmental ped should fill it out. It just needed one check mark and a signature. I know she probably thinks we don't "deserve" disabled parking, but it sure would come in handy when I am by myself. Or think, Jack's on the verge of walking solo with his walker and HE will need disabled parking!
Jack is having a difficult time when I drop him off at school. He cries (a heartwrenching-tear-my-heart-out cry), and it's chaotic with all the kids running around and yelling and crying and then they go right into a loud song time. i think it's too much for Jack to handle at this point. I think he's overwhelmed, overstimmed, and sad that mommy left too. The next activity is book time and Jack usually settles down by that point.
His teacher came out to talk to me today right before class was over and she asked if I thought it would be a good idea to bring Jack to school 15 minutes later than everyone else. My gut reaction was I do not want to do this! I told her I was thinking of putting Jack in his stroller (they use an umbrella stroller with Jack various times during the day) and seeing if that wouldn't make him feel better and more secure than being handed over to strange people. I said I would like to try that first before we start skipping the first part of class.
I guess I just don't want Jack to miss any part of school. He's fine after he's there a little and loves the other kids, loves the shrieking and yelling and even the other songs they sing throughout the afternoon.
I think I'd like to try and see if it won't get better before I start bringing him in later. I also wondered if it was possible for someone to take him into the smaller classroom while everyone's getting settled.
I love the school and the teachers, and I know she was concerned for Jack...it's not like she was saying "hey, we don't want to deal with your crying kid, so bring him in later" or anything!
I think Jack will come around eventually. I also don't mean to be a mean mommy but I don't think it's hurting him letting him cry for a little...you know? I don't want to run and make accomidations for everything he's not used to or we'll end up creating a little monster! LOL!
I hope he can get adjusted soon! I will keep you posted.
Thursday, March 09, 2006
Jack's First Day of School!
Jack had his very first day of school yesterday!!
We got there a little early and sat with a few other moms and kids until it was time to go back to the class room. We found Jack's little cubby and hung his coat and bookbag. There's a little Teddy bear with Jack's name on it hanging in his cubby and his is closest to the class room door.
Miss C. took Jack and said "Okay Jack say bye-bye to Mommy" and they headed into the class room. I was able to see through a small window (the kids can't see out, but we can see in). They all sat in a circle and Miss C. said "We have a new student today, his name is Jack" and some of the kids said "HI JAAAAACK!!!!" and then she got out an Elmo doll and said, "And today is Elmo's first day of school too." I thought that was so cute! I guess Jack didn't feel so scared because it was Elmo's first day too! They started with a song (and Jack CRIED) and then they read a book (and Jack CRIED). They then went on to choose an individual play time activity...Jack chose blocks (and CRIED)...after a few moments Jack got busy and stopped crying and I was able to talk to the other teacher Miss L., the physical therapist, and the speech therapist. Then I left to go home. The house felt so empty without him here!!
When I went back to pick him up they were all out on the playground. I went inside and waited with the other moms and dads and watched through the window as they sang their good bye song. Jack looked so happy! His teacher brought him out and said Jack had a very good day. He played with toys and had a lot of fun. His teacher said he had a choice of pudding or applesauce for snack and he ate BOTH LOL!!!!! And had some water in a little dixie cup. He even painted his first painting ever! He painted brown mud on a little paper pig.
There were about 14 kids between the two classes. The kids and teachers go back and forth between the two rooms and their are about 4 aids that help out with the kids too. There were children with all different abilities. I would say Jack was somewhere in the middle. It was so awesome to see him among his peers.
As we were getting ready to leave a little girl was heading toward her mom and she said "Mom, I made a new friend today" and the mom asked what her new friend's name was...the little girl said "His name was JACK!" So Jack made his first little friend already.
I am excited to see how he does today when I drop him off. I hope he's as excited as I am! I will let you know...
We got there a little early and sat with a few other moms and kids until it was time to go back to the class room. We found Jack's little cubby and hung his coat and bookbag. There's a little Teddy bear with Jack's name on it hanging in his cubby and his is closest to the class room door.
Miss C. took Jack and said "Okay Jack say bye-bye to Mommy" and they headed into the class room. I was able to see through a small window (the kids can't see out, but we can see in). They all sat in a circle and Miss C. said "We have a new student today, his name is Jack" and some of the kids said "HI JAAAAACK!!!!" and then she got out an Elmo doll and said, "And today is Elmo's first day of school too." I thought that was so cute! I guess Jack didn't feel so scared because it was Elmo's first day too! They started with a song (and Jack CRIED) and then they read a book (and Jack CRIED). They then went on to choose an individual play time activity...Jack chose blocks (and CRIED)...after a few moments Jack got busy and stopped crying and I was able to talk to the other teacher Miss L., the physical therapist, and the speech therapist. Then I left to go home. The house felt so empty without him here!!
When I went back to pick him up they were all out on the playground. I went inside and waited with the other moms and dads and watched through the window as they sang their good bye song. Jack looked so happy! His teacher brought him out and said Jack had a very good day. He played with toys and had a lot of fun. His teacher said he had a choice of pudding or applesauce for snack and he ate BOTH LOL!!!!! And had some water in a little dixie cup. He even painted his first painting ever! He painted brown mud on a little paper pig.
There were about 14 kids between the two classes. The kids and teachers go back and forth between the two rooms and their are about 4 aids that help out with the kids too. There were children with all different abilities. I would say Jack was somewhere in the middle. It was so awesome to see him among his peers.
As we were getting ready to leave a little girl was heading toward her mom and she said "Mom, I made a new friend today" and the mom asked what her new friend's name was...the little girl said "His name was JACK!" So Jack made his first little friend already.
I am excited to see how he does today when I drop him off. I hope he's as excited as I am! I will let you know...
Monday, March 06, 2006
OH NO!!!!
Last night Jack was acting kind of tired and when I was getting his jammies on I noticed he felt really HOT. I took his temp and it was 102.5!! I gave him a dose of Motrin right away and he went to sleep finally around 10 pm...he was up an hour later and I rocked him until 12 am. This morning he woke up at 4 am with a fever of 102.6. The poor guy is supposed to start school today. We've been up since 4 am and he slept from 7-7:30 am.
On Friday I had a horrible fever and chills and stomach issues. I really think he caught whatever I had. I was totally down for the count. By the next afternoon I was feeling much better. But now this morning I've had terrible stomach issues again -- all morning!
So far Jack just has the fever, no runny diapers or vomiting or cold symptoms. I know he can't go to school today (he was supposed to start at 12:45 pm) and I am so dissapointed that he'll miss his first day. I am not running him to the ped quite yet, only because I am hoping his fever is gone this afternoon (like mine was). If not, I will take him in to be seen. He's so sad and grumpy right now, and I know how badly he's feeling since I could not get off the couch on Friday.
Please send +++ thoughts our way that he gets well and can go be a big boy (a healthy big boy) at school tomorrow or at least this week sometime.
I will keep you all posted. I must go and call the school.
On Friday I had a horrible fever and chills and stomach issues. I really think he caught whatever I had. I was totally down for the count. By the next afternoon I was feeling much better. But now this morning I've had terrible stomach issues again -- all morning!
So far Jack just has the fever, no runny diapers or vomiting or cold symptoms. I know he can't go to school today (he was supposed to start at 12:45 pm) and I am so dissapointed that he'll miss his first day. I am not running him to the ped quite yet, only because I am hoping his fever is gone this afternoon (like mine was). If not, I will take him in to be seen. He's so sad and grumpy right now, and I know how badly he's feeling since I could not get off the couch on Friday.
Please send +++ thoughts our way that he gets well and can go be a big boy (a healthy big boy) at school tomorrow or at least this week sometime.
I will keep you all posted. I must go and call the school.
Sunday, March 05, 2006
HAPPY THIRD BIRTHDAY JACK RILEY!
Happy Birthday to my sweet boy!!!!
Three years old today! Wow, I can hardly believe it! We love you little man!!!!
Be sure to wish Jack good luck tomorrow -- he has his first day of SCHOOL!!!!
Three years old today! Wow, I can hardly believe it! We love you little man!!!!
Be sure to wish Jack good luck tomorrow -- he has his first day of SCHOOL!!!!
Monday, February 27, 2006
Our House is...
SOLD!
¡Vendido!
Verkauft!
Venduto!
Verkocht!
I am soooooo excited!!!!! We got the call yesterday afternoon!!!! We'll be moving the LAST WEEKEND IN APRIL!!!!! YIPPEEEEE!!!!!!!!! YAY!!!!!!!
Friday, February 24, 2006
Faith in the Baby
Another mom shared this article with me. I wanted to share it with all of you. It is amazing how different the world is when you're on the "other" side. I don't often share my feelings about Jack's differences. Partly because Jack is Jack and that's it! He's special to me, and to so many people...but I do wonder about the day when we're faced with the not-so-enlightened stranger. All I want for Jack is for him to be given a chance. He's got an amazing spirit and it's his gift to share. While this mother's story is very different from mine -- there's a commonality -- raising a special needs child.
Faith in the baby
They told me he was fine. I don't know that I ever believed them.
By Kristin Ohlson
April 5, 2001 | I imagine my son swaying at the counter, shifting from one foot to the other. He says "Huh?" when the cashier tells him how much the boombox comes to with tax and when she tells him again, he stares at her. Then he pulls a credit card from his wallet, rattles it on the counter, spins it between his thumb and forefinger, and puts it away again. He asks the cashier if this boombox is the most popular model. He asks her if she thinks he should use his credit card or his checkbook and she frowns slightly, not just at the questions but at the timbre of his voice, which sounds as if it comes from some node of tissue not typically used for sound.
Maybe she figures it out. Maybe she realizes that this young man is special in a way not implied by the sign over the cash register proclaiming: "All our customers are special." Maybe she relaxes a bit; maybe she even enjoys suspending her routine to watch my son as he prints the store's name on the check in letters like sticks thrown on the sidewalk, as he pauses to ask her how to spell "forty." Or not; she might exchange annoyed looks with the other not-as-special customers who are piling up behind him with their boxes of computer peripherals and televisions. She might even grin when one of them brays his impatience.
How much of this does my son notice on this day of firsts -- his first time taking the five-mile bus ride to this store from his new apartment, his first time making such a large purchase on his own? I'm not there but my guess is, not much. My guess is that he's thinking of the burly electronics inside the box, of the spot he's cleared for the boombox on his dresser between the Special Olympics medals and the bowling trophy. He's thinking of the well-ordered plentitude of his music; he's deciding which tape or CD he will play first and he knows exactly where it rests, in which case, in which Plexiglas slot. He doesn't notice the stares and grumbles, and they won't change the way he makes his way through this checkout line the next time he visits this store. These are details nearly as arcane to him as the rules of punctuation or boccie ball.
This kind of oblivion has been both a curse and a blessing during his 25 years. On this day, it would be a blessing. Matthew leaves the store's mutterers behind. He grips his boombox under one arm, and he tromps to the bus stop as his other arm pistons into a January fog. After he finds his seat on the bus, after he settles his package on his knees, he raises his fists and shakes them around his face like maracas. This is how he expresses joy.
I was a little girl with apocalyptic visions. I was also very practical; every night, during my last moments of clarity before sleep, I worked out strategies to avert disaster. Worried that people were frittering away the world's supply of fresh water, I imagined household systems that caught lightly used water and piped it into gardens. Mindful of the burgeoning pile of human waste, I imagined adding a mystery ingredient to ordinary poop and turning it into something useful like bricks or asphalt. And then there was overpopulation: I imagined peeling away all the layers of humanity that made life harder or less pleasant. I made whole categories of human beings vanish: the bad people who were in prison, the crazy people who shouted from street corners, the retarded people who didn't really do any harm but weren't able to contribute much, either. Before I fell asleep, I always amended this last final solution: My older cousin Stephen could stay in my emptier, ideal world. He was retarded, but he was always very sweet to me.
My Matthew, my first child, was born nearly 20 years later in a hulking old Cleveland hospital. The pregnancy was lovely until the final, ponderous weeks, and the delivery was unremarkable until Matt slid into the doctor's hands. Then, from way up at the head of the bed, I heard all the voices in the room assume a quiet, measured urgency, as if they were creating a blockade of words to keep something quick and terrible from being said. They didn't bring him to me, at first. Then someone came to tell me he had been born with the umbilical cord wrapped around his neck and that my amniotic fluid had been stained with his excrement. I'm sure I asked if he was all right and I'm sure they told me something, but it wasn't until days later, after he spent his first days in an isolette and had been observed and tested, that they told me he was fine.
I don't know that I ever believed them. Although I never saw Matt lined up with all the other newborns in the hospital nursery, he seemed different from the other babies I knew. He was pale, his eyes were puffy and bruised looking, and his waking moments were filled with noise -- not the howling his father and I had braced ourselves for, but chirps and grunts and twitters. He generated his own white noise. When I'd tell other people about this, they'd sometimes pat my arm indulgently and tell me each baby had its own enigmatic little personality. Give yourself time to get to know him, they said.
I tried to get to know him, but he seemed uninterested in either his father or me. When I'd pick him up he'd startle, his arms jerking like small featherless wings, and he never seemed comforted by my touch. When I'd talk or sing to him, he often didn't even turn his head; if he did, he soon turned away without interest. Instead of looking at me, he'd stare at the light bulb or the glare coming in a window or, as he asserted more control over his limbs, the restless movement of his own tiny fingers. We could get him to smile or laugh, but with great effort, usually after his father had thrown him in the air over and over again. It seemed to be the movement, not his parents' adoration, that pleased him.
It seemed that my fears about Matt would be confirmed if I spoke them out loud, so I didn't. Still, I felt like the unnamed differences that set him apart from all those other babies lurked around corners; I felt that if I left him unguarded, these differences would snatch him away for good. The playpen that well-meaning relatives gave us held unfolded laundry in the corner of the living room. Instead of using it, I would hold Matt often and carry on a hopeful monologue. I would set him down on the floor and crawl around him in circles, trying to make contact with his disinterested gaze. When Matt woke up at night crying, I would pick him up but he'd cry even harder and push away. I'd put him back in the crib to comfort him, then sit on the floor weeping as he flailed himself back to sleep.
When he was 8 months old, I took him to the pediatrician for a routine checkup. My mother-in-law from New York came too. We were in high spirits: We had big plans to go antiquing in Amish country after the doctor's appointment. But instead of the usual pleasant chitchat about appetite and bowel movements, the doctor studied Matt's face and called his name from different parts of the room. He snapped his fingers near Matt's ear, then watched him startle, look up and turn away. He wiggled a toy over Matt's head and made a fake, falsetto laugh, then sighed as Matt frowned in the other direction. I was afraid that the doctor was searching for something I didn't really want him to find.
"He should be more interested in people," the doctor said, looking sad. "He should be looking around for Mama or laughing with me at the toy. Instead, he looks at the shiny handle on the cupboard."
My mother-in-law was able to ask all the important questions. I couldn't speak or even follow what she and the doctor were saying. I picked Matt up and rubbed my face against his hair, wishing he would nestle against me just this once.
We didn't go antiquing, of course. We went home and made phone calls to the neurologist the pediatrician had recommended. Then we made the harder calls, the ones to my parents in California and to our friends and to all the others who loved this baby and his parents from afar. My mother-in-law stayed for many days, and then my parents took a shift, and then my mother-in-law came back for a while longer. I stayed in bed with the curtains drawn as much as I could, thinking sometimes of the girl who had gone to sleep with Hitlerian schemes for a perfect world. By the time Matt was born, I didn't believe in God, luck or fate. Still, I had some kind of certainty that those long-ago thoughts had ruined my baby boy.
My mother-in-law tells me that I said something very wise during that first year. At some point in the ongoing conversation about syndromes and specialists and our wrenching shift in expectations, I lifted my head and looked at my son. I said, "We have to have faith in the baby."
I don't remember saying this, and I don't know that the next few years showed great faith. We worked with a neurologist, we found a wonderful pediatrician who specialized in children with problems, we went through a slew of speech therapists and music therapists and psychologists and the like. We took Matt to oddball practitioners, too -- a hypnotherapist in Minneapolis, a listening therapist on Cleveland's East Side, a pediatrician on Cleveland's West Side who immersed a lock of Matt's hair in solution to look for chemical irregularities. Matt was tested and observed over and over; today's healthcare system would never allow such vast duplication of effort.
In the end, there was no culprit to pursue -- no smoking gun among his chromosomes, no malfunctioning organ, no negligence or error by the hospital during delivery. There was only a description. He was retarded -- significantly so, in the early years -- with what they called autistic-like behavior.
It seemed like a betrayal when we stopped looking for cures and began to accept our child as he was. Matt reached most of the developmental and social milestones, albeit later and with greater fanfare than most babies. He walked when he was 1 and a half. He said his first word after he turned 2. At 3, Matt succeeded in using his potty chair, with me, his father and my in-laws watching. We cheered so much that Matt's great-grandmother abandoned "Perry Mason" and came running; she thought we had won the lottery.
When Matt was about 4, we were walking down the street and, all of a sudden, he was not beside me. I turned around to see him saying something to an old man who was sitting on a blanket by the side of a building. "Friendly kid," the man said, waggling his fingers at me. "He came right over and started a conversation." This was a milestone as important as the others: Without prompting, without anyone calling his name or waving a toy, Matt had approached another human being.
We had our second baby, Jamie Rose, when Matt was nearly 3. That initial year was lovely but sad because it forced us to relive all we had missed with Matt. When Jamie grinned as I ran my finger over her lips that first week, when she began to watch intently as I walked from the sink to the table to the stove, when she cried as I left the room, I mourned again the gulf that had separated me from baby Matt.
When I took the two of them out, the comparison was even more painful. Jamie's lashes grew in long and black, her hair glowed in golden ringlets, her eyes shone an opal blue, and she soon learned to enjoy the attention of people in grocery stores. They'd let the ice cream melt in their carts as they cooed over her. The same people looked at her brother uneasily, not sure what to say to this child who flinched from their gaze and whirled in ceaseless activity at the end of my arm.
He grew, they grew, we all grew. Matt and Jamie were pals during their early years. She came along to all of Matt's therapeutic play groups and classes, tumbling in with the other "special" children as well as their siblings. In addition to these activities, I dragged the two of them through the full array of middle-class enrichment. I enrolled them in classes at the art museum, the natural history museum and a dance studio; they took ice-skating lessons and joined Pee Wee soccer. I stayed through each of these activities, ready to herd Matt back into the group if he ran off, wincing every time one of the other children would stop to stare at him shaking his hands around his eyes. Still, I persevered: I had a foolish hope that one of these activities might tap a hidden source of brilliance in him, make neurons dance the way they had when Mozart first heard music or Einstein saw stars. People were fond of suggesting these duckling-into-swan analogies to me.
When he was 7 years old, Matt was placed in a public school class for multihandicapped children, a cozy nest of eight such mysterious ducklings with a teacher and two aides. A bus pulled up in front of our house every morning driven by a cheerful man who sang "Volare" along the route, and Matt rolled away from me without a backward glance. I visited his class often. The teacher was droll and matter-of-fact about her assortment of quirky characters; she was fond of dismissing their quirks as an overdose of their parent's tendencies. "Look at him," she'd say, as Matt raced from one activity to another. "He's just like his father!" Enough time had passed since the shock of Matt's diagnosis that I found this funny.
I met other parents who were also at this stop on the road from grief to acceptance -- confronted by the things in our children that we couldn't understand or change, it helped to laugh. I remember going to a festival once with Vincent, a boy in Matt's class, and his mother, Carol. She and I walked together, the boys walked in front of us and we could hear their animated nonconversation. Vincent was talking about baseball, Matt was talking about cartoon characters and neither listened to the other. Carol said that she imagined that in some mirror-opposite universe, two boys were also leaving a festival with their mothers. "Those boys are saying, 'Mothers, might we stop for a snack?'" Carol pantomimed the boys' exaggerated courtesy. "And one mother answers by repeating the score of yesterday's game 10 times and the other answers with 'Go, go Gadget!'" It was an apt way of describing how estranged we sometimes felt from our children, how cosmically and comically mismatched.
Matt stayed in the multihandicapped class for three years. Toward the end of the third year, the psychologist we'd been taking him to ever since he was a toddler administered a routine I.Q. test. The next time we saw her, she rushed into her office with a bulging file of papers and a look of great excitement. "I have wonderful news," she announced. "Matt is not retarded!"
In a way, this was meaningless: Matt was the same person he had been the day before, but his unanticipated ability to match like objects in one part of the test had pushed him over the threshold to the bottom tier of normal. "That's great," I told her, but more to be polite than out of any real feeling. Even though there had been a time when I would have cherished this new, improved labeling, I knew by then that my son was a complicated being who defied categorization, that even though a new hole was being offered he would still be the wrong shape for it. And I can't say that what followed was good for him, although it's still hard to tell. He was now ineligible for the multihandicapped class. The option suggested by our school system was to put him in a regular classroom in our neighborhood school with pull-out hours in the learning disabilities resource room. In other words, he was mainstreamed.
Mainstreaming isn't so bad if you're part of the mainstream. The next four years of public school were difficult, and I take little solace in the possibility that all those other kids got a lesson in compassion by being around Matt. It was a rude shock for him to be snatched from his multihandicapped haven, in which every little triumph was celebrated and every deviation calmly corrected. In contrast, his years in the academic mainstream were ones of nearly unremitting failure. Even though his I.Q. had climbed slightly higher, he still made odd noises and had a hard time staying in a chair, his reading was below grade level and his math and penmanship were hopeless. He had two good teachers in the elementary school and one bad one, but none was equipped to do much for him. They didn't know anything about kids like him, and they hardly had enough time to devote to the rest of their students.
Most of his elementary school classmates never quite figured out what to make of him, so they kept their distance. They knew he had some kind of disability, but it wasn't one they could easily understand -- it wasn't like he was blind or lame or even severely retarded. He wasn't different enough to solicit their tenderness; he just made them nervous. Matt had a few friends who came over after school, but most of them were also marginalized, kids whose miserable family lives stunted their own ability to fit in. One of them could spend the weekend at our house without anyone in his family wondering where he was; to the outrage of all his relatives, he later turned in his father to the police for being a drug dealer. But even these guys, his fellow wretched, didn't want the stigma of being seen with him at school.
As time went on, Matt become less otherworldly but more aware of how different he was from the children in this world. He was the one who could never finish the test, the one who couldn't remember how to get from one part of the building to another, the one who completed the project last, no matter what his class was doing. I believe he was also the one child who didn't receive some kind of award or recognition at the school's graduation ceremony for fifth-graders; I noticed and hoped he didn't and fumed all the way through the ceremony.
He also had the most painful comparison right in his own home: his sister, whose abilities had outstripped his years before. When she grew old enough to get letter grades instead of "S" or "U," he was dismayed by how easy it was for her to do well. One day he came home from school and looked through a pile of her papers on the dining room table, each one perfect. "A's, all A's," he wailed, flinging her papers to the floor. "Why does she get all the sweet life?"
By the time he reached the middle school's learning disabilities program, I felt like I was sending him off every morning for a day in Beirut. It's not that the children were so much more vicious to him than they were to one another -- or to my daughter, by the time she went there -- but they had richer opportunities for torment and Matt had fewer resources to fall back on. He had always been excitable but now he had epic tantrums, both in the classroom and at home. All the therapists' advice didn't seem to help. Finally, Matt's father and I met with a psychiatrist to revisit the idea of medication -- Matt had tried Ritalin before -- and the psychiatrist talked to the three of us, then the two of us, then Matt alone. His recommendation was to get Matt out of that school. "He's depressed," the psychiatrist told us. "It's no wonder: His life is miserable."
We looked at other public school programs, then at private schools, but found no local options. Finally, we heard of a boarding school in upstate New York that sounded perfect except for the fact that it was a 12-hour drive from home. Matt and his father and I visited for a day, and Matt decided he wanted to try it for a week. The house was peaceful when we returned home; we felt a little guilty for enjoying it so much. But when I went grocery shopping, it struck me how very different life would be with my son gone. I made a spectacle of myself, weeping in the aisle with the cans of anchovies, remembering how we couldn't leave an open tin in the refrigerator when he was little or we'd find a trail of anchovy oil from the kitchen to the television. Life without him and his odd little ways seemed bleak.
His dad and I went to pick him up at the end of the week. We held each other's hands as he played basketball with a team, instead of just watching others play, and we saw people jump up and down when he almost made a point. We saw tables full of kids call his name in the cafeteria and ask him to sit with them. We saw him speak with confidence in a history class and even help another boy find the answer to the teacher's question in his book. Three girls trailed behind him as he showed us around campus, pretty girls who giggled and seemed to find him a fascinating stranger. He told us he wanted to stay at the school and I cried when we left him there, not just because I would miss him but because we had finally found a place where he fit in. Matt spent the next four years at this school, finding blissful respite from the rigors of being different.
He was a much happier boy when we moved him back home at the age of 18. As a special-education student, he was eligible for four more years of public school education. We hoped things would be easier for him in the high school than in the middle school, and they were. The high school draws kids from all the city schools, plus it pools special-education students with other districts. There was a critical mass of kids like Matt at the high school. They weren't the mainstream, but they were a sizable and exuberant stream of their own.
Matt had four good years there, which is more than you can say for most people. He made lots of friends, had two girlfriends and got work experience through the school's vocational department. He had three excellent teachers and did well in his classes. He was a minority in more than one way -- our high school is about 70 percent African-American and he is not -- and he absorbed the school's mantra of racial harmony so well that he now buys just about anything marketers pitch to blacks. I'm sure he was the only 22-year-old white guy to buy a copy of the movie "Waiting to Exhale" the day it was released, and this is just one of the things I love about him.
When he graduated, my entire family from California and his dad's entire family from New York came. At the ceremony, a school administrator warned the 3,000 people in the audience against rowdy applause, but there were enough of the people who love Matt to do the wave and to make enough noise and we did.
After Matthew was diagnosed all those years ago, my Aunt Helen sent me a letter right away. "When Stephen was born," she wrote, "he was our greatest sorrow. Now he's our greatest joy."
Lucky me, I have many joys. It would be hard to say which is the greatest, but I can say unequivocally that Matt is one of them -- at least, most of the time. He has the kind of life that many of us wish for our children. He's in good health, eats a lot of vegetables and changes his sheets once a week. He has an apartment, a compatible roommate, two sports channels and season tickets to the Cleveland Indians. He has work that he enjoys, a job bagging groceries that showcases the almost courtly good manners he must have picked up from some of his well-bred boarding school friends. "It's been a pleasure to help you today, ma'am," I hear him say to customers as I hunker near the 40-pound bags of dog food to watch him work. His customers like him: He receives an extraordinary amount of money in tips, something I've decided must be some kind of cosmic compensation for middle school. His bosses like him, too: He was named "Employee of the Month" once and then "Employee of the Year," for which he received a gas grill the size of a golf cart.
People point to Matt's successes and tell me they have something to do with my great mothering skills. I don't feel I can take that much credit for this complex young man; I can only marvel at the ways in which my "faith in the baby" utterance was prescient. The essence of Matt was there from the beginning, written into his genetic code and embellished by the unique events of his gestation. He has his father's concern for order and cleanliness as well as -- surprise! -- his ability to charm a room full of people. He has my lack of enthusiasm for talking on the phone, but also shares both grandmothers' and my feeling for words, especially big Latinate bombs. While his reading level is about that of the average American -- good enough to read USA Today -- his speech is loaded with words like "fastidious" and "apprehensive."
Of all my father's 11 grandchildren, I think my son is the one who resembles him the most. Matt tells a joke just like my father does, he walks like my father and even his few remaining noises remind me of my father. Matt often makes a low, nasal humming sound; people who don't know him hear it from another room and think a machine has gone bad. My father also hums a lot, a kind of mysterious drone while he's gardening or washing the dishes that my siblings and I think might be "Santa Lucia." When the two of them sing at family functions, the rest of us exchange glances.
At the very least, Matt has taught me as much as I taught him. I've always been shy, with hardly enough nerve to face the world with my own imperfections. It was harder still to face it alongside my son's more unorthodox flaws, which drew attention to the two of us even when he wasn't setting off fire alarms in airports (just once) or playing with 5-year-old toys when he was 15 (many times) or doing a little Rumpelstiltskin dance as he walked down the street (still does it once in a while). I'm used to faces whipping around for a second look, and there are many times I would shrink from rather than champion him. It was hard for me to be in public with my son. It is still hard at times, and that's a terrible thing for a mother to admit.
My daughter almost never has such qualms. Jamie was raised not only with her brother's differences but also with those of his peers and has always been comfortable with the range of alterations on "normal." One of Matt's friends is the king of trivia -- ask him who sang "The Duke of Earl," who held the National League record for home runs in 1972, what the capital of Mozambique is, anything, and he knows, but he can't button his shirt. Another can't add two and two but can drive a car. Jamie learned early on that abilities don't come in clumps, that just because someone can do one thing doesn't mean he can do another. She became sensitive to these hidden surprises and was unfazed by the scorn of people who weren't.
Early on, Matt's father and I decided that the world has two camps: those who sneer at our son's differences and those quirky souls who enjoy them. It's gratifying when we meet strangers in the latter camp. A few years ago, I took Matt to a ballgame in which the Cleveland Indians clinched the championship for the American League Central Division. The Indians were playing the Baltimore Orioles, and Matt and I had great seats between home and first, just four rows from the field. The only drawback was that the row in front of us was filled with guys from Baltimore, who sat there watching glumly as the Indians hammered their team. I was afraid that Matt might piss one of these guys off. Matt is almost always on his feet. He loves to recite the provenance of each player: the various teams and positions he's played, the honors he's received over the course of his career. I often tell him to shut up and watch this game, the one we paid to see, but he's in thrall to the Game, all its players, all its moments.
At the Baltimore-Cleveland game, I was sure Matt was driving the guys in front of us crazy, especially the one guy he leaned over every time a batter took his stance. The guy would turn his head toward us slightly, which is sometimes a polite indication -- like a skunk shaking its tail -- that something bad is in the works. I kept pulling Matt down; he kept standing up again. Finally, after Matt spat out a long string of past engagements for Kevin Bass -- that he had started with Milwaukee in 1982, then moved on to Houston, then to San Francisco and then back to Houston before he got traded to Baltimore -- the guy turned all the way around. He removed his cap and set it on the seat next to him and I got ready to block a punch. But the guy grinned. "You forgot New York," he told Matt. "Kevin had a stint in New York between San Fran and Houston." Matt's mouth dropped open as he considered this, then he shook his fists around his eyes. I almost did, too.
We still run into members of the other camp, and it's still as painful as ever. Not long ago, Matt and I were at the airport waiting for a flight to California. The plane was delayed so we decided to go back to one of the fast-food counters in the lobby and get something to eat. It was crowded and I figured it would take us 10 minutes to reach the counter, but was afraid Matt still wouldn't have figured out what he wanted by the time the woman asked for his order.
"Look at the menu," I instructed, pointing to the pictures of sandwiches over the counter. "Figure out what you want now so that you don't keep everyone waiting." He rocked on his heels and hummed.
By the time the woman asked what he wanted, he was still rocking. He looked at the breakfast side of the menu. He looked at the lunch/dinner side of the menu. I gritted my teeth and stepped away.
Then a man in the line started making long, operatic sighs. He looked at the people around him to find a kindred spirit in exasperation. He settled on me, not realizing that Matt and I were together. Matt was still trying to decide. The woman at the register was patient. The man made large gestures of annoyance -- a hand thrown to his forehead, a slight kick at his briefcase. He looked at me again and groaned.
I realized I could just look away and pretend that this man wasn't making ugly faces at my son. I've done it in the past. Instead, I gave way to 24 years of anger at such boorishness. "Do you have a problem?" I asked him.
He pointed to my son. "You'd think after all this time in line he'd know what the hell he wanted. What is he, a retard or something?"
"Yes," I said. "Do you have a problem with that?"
The man was only slightly abashed. "Are you his mother?"
I nodded.
"Then you should be helping him or something. He shouldn't do this. He shouldn't be able to just stand up there and ..." He sputtered and stopped. The other people in the line regarded us carefully.
"He has as much right as anyone else to order lunch." It felt as if the whole airport was listening.
By that time, the woman behind the counter was handing Matt's order to him. Her arm hung in the air as he looked back at me, his mouth a slightly whiskered circle of wonder.
The man's face deepened from capillary-streaked pink to purple. He shuddered inside his black suit. He fiddled with his watch. "I'm sorry," he finally said, looking back up.
"No, you're an asshole." I was calm as the words left my mouth, but as soon as they did I started to cry. Matt was shocked. He almost walked away from the cashier without his change.
"What happened?" he asked several times as we walked toward our plane. He knew how unlikely it was for me to make a scene -- he makes scenes, his father makes scenes, but his mother usually keeps quiet. He touched my shoulder a few times. He unwrapped his burger and offered me a bite. He put his arm around me. Then he forgot about the confusion 20 feet back. He hummed and began to walk a little faster, his thoughts already in California, his feet already touching down in a circle of people who love him.
salon.com
About the writer
Kristin Ohlson is a Cleveland writer whose short stories have appeared in Indiana Review and Ascent; her nonfiction has been published in the New York Times, Ms., Discover and Food & Wine.
Faith in the baby
They told me he was fine. I don't know that I ever believed them.
By Kristin Ohlson
April 5, 2001 | I imagine my son swaying at the counter, shifting from one foot to the other. He says "Huh?" when the cashier tells him how much the boombox comes to with tax and when she tells him again, he stares at her. Then he pulls a credit card from his wallet, rattles it on the counter, spins it between his thumb and forefinger, and puts it away again. He asks the cashier if this boombox is the most popular model. He asks her if she thinks he should use his credit card or his checkbook and she frowns slightly, not just at the questions but at the timbre of his voice, which sounds as if it comes from some node of tissue not typically used for sound.
Maybe she figures it out. Maybe she realizes that this young man is special in a way not implied by the sign over the cash register proclaiming: "All our customers are special." Maybe she relaxes a bit; maybe she even enjoys suspending her routine to watch my son as he prints the store's name on the check in letters like sticks thrown on the sidewalk, as he pauses to ask her how to spell "forty." Or not; she might exchange annoyed looks with the other not-as-special customers who are piling up behind him with their boxes of computer peripherals and televisions. She might even grin when one of them brays his impatience.
How much of this does my son notice on this day of firsts -- his first time taking the five-mile bus ride to this store from his new apartment, his first time making such a large purchase on his own? I'm not there but my guess is, not much. My guess is that he's thinking of the burly electronics inside the box, of the spot he's cleared for the boombox on his dresser between the Special Olympics medals and the bowling trophy. He's thinking of the well-ordered plentitude of his music; he's deciding which tape or CD he will play first and he knows exactly where it rests, in which case, in which Plexiglas slot. He doesn't notice the stares and grumbles, and they won't change the way he makes his way through this checkout line the next time he visits this store. These are details nearly as arcane to him as the rules of punctuation or boccie ball.
This kind of oblivion has been both a curse and a blessing during his 25 years. On this day, it would be a blessing. Matthew leaves the store's mutterers behind. He grips his boombox under one arm, and he tromps to the bus stop as his other arm pistons into a January fog. After he finds his seat on the bus, after he settles his package on his knees, he raises his fists and shakes them around his face like maracas. This is how he expresses joy.
I was a little girl with apocalyptic visions. I was also very practical; every night, during my last moments of clarity before sleep, I worked out strategies to avert disaster. Worried that people were frittering away the world's supply of fresh water, I imagined household systems that caught lightly used water and piped it into gardens. Mindful of the burgeoning pile of human waste, I imagined adding a mystery ingredient to ordinary poop and turning it into something useful like bricks or asphalt. And then there was overpopulation: I imagined peeling away all the layers of humanity that made life harder or less pleasant. I made whole categories of human beings vanish: the bad people who were in prison, the crazy people who shouted from street corners, the retarded people who didn't really do any harm but weren't able to contribute much, either. Before I fell asleep, I always amended this last final solution: My older cousin Stephen could stay in my emptier, ideal world. He was retarded, but he was always very sweet to me.
My Matthew, my first child, was born nearly 20 years later in a hulking old Cleveland hospital. The pregnancy was lovely until the final, ponderous weeks, and the delivery was unremarkable until Matt slid into the doctor's hands. Then, from way up at the head of the bed, I heard all the voices in the room assume a quiet, measured urgency, as if they were creating a blockade of words to keep something quick and terrible from being said. They didn't bring him to me, at first. Then someone came to tell me he had been born with the umbilical cord wrapped around his neck and that my amniotic fluid had been stained with his excrement. I'm sure I asked if he was all right and I'm sure they told me something, but it wasn't until days later, after he spent his first days in an isolette and had been observed and tested, that they told me he was fine.
I don't know that I ever believed them. Although I never saw Matt lined up with all the other newborns in the hospital nursery, he seemed different from the other babies I knew. He was pale, his eyes were puffy and bruised looking, and his waking moments were filled with noise -- not the howling his father and I had braced ourselves for, but chirps and grunts and twitters. He generated his own white noise. When I'd tell other people about this, they'd sometimes pat my arm indulgently and tell me each baby had its own enigmatic little personality. Give yourself time to get to know him, they said.
I tried to get to know him, but he seemed uninterested in either his father or me. When I'd pick him up he'd startle, his arms jerking like small featherless wings, and he never seemed comforted by my touch. When I'd talk or sing to him, he often didn't even turn his head; if he did, he soon turned away without interest. Instead of looking at me, he'd stare at the light bulb or the glare coming in a window or, as he asserted more control over his limbs, the restless movement of his own tiny fingers. We could get him to smile or laugh, but with great effort, usually after his father had thrown him in the air over and over again. It seemed to be the movement, not his parents' adoration, that pleased him.
It seemed that my fears about Matt would be confirmed if I spoke them out loud, so I didn't. Still, I felt like the unnamed differences that set him apart from all those other babies lurked around corners; I felt that if I left him unguarded, these differences would snatch him away for good. The playpen that well-meaning relatives gave us held unfolded laundry in the corner of the living room. Instead of using it, I would hold Matt often and carry on a hopeful monologue. I would set him down on the floor and crawl around him in circles, trying to make contact with his disinterested gaze. When Matt woke up at night crying, I would pick him up but he'd cry even harder and push away. I'd put him back in the crib to comfort him, then sit on the floor weeping as he flailed himself back to sleep.
When he was 8 months old, I took him to the pediatrician for a routine checkup. My mother-in-law from New York came too. We were in high spirits: We had big plans to go antiquing in Amish country after the doctor's appointment. But instead of the usual pleasant chitchat about appetite and bowel movements, the doctor studied Matt's face and called his name from different parts of the room. He snapped his fingers near Matt's ear, then watched him startle, look up and turn away. He wiggled a toy over Matt's head and made a fake, falsetto laugh, then sighed as Matt frowned in the other direction. I was afraid that the doctor was searching for something I didn't really want him to find.
"He should be more interested in people," the doctor said, looking sad. "He should be looking around for Mama or laughing with me at the toy. Instead, he looks at the shiny handle on the cupboard."
My mother-in-law was able to ask all the important questions. I couldn't speak or even follow what she and the doctor were saying. I picked Matt up and rubbed my face against his hair, wishing he would nestle against me just this once.
We didn't go antiquing, of course. We went home and made phone calls to the neurologist the pediatrician had recommended. Then we made the harder calls, the ones to my parents in California and to our friends and to all the others who loved this baby and his parents from afar. My mother-in-law stayed for many days, and then my parents took a shift, and then my mother-in-law came back for a while longer. I stayed in bed with the curtains drawn as much as I could, thinking sometimes of the girl who had gone to sleep with Hitlerian schemes for a perfect world. By the time Matt was born, I didn't believe in God, luck or fate. Still, I had some kind of certainty that those long-ago thoughts had ruined my baby boy.
My mother-in-law tells me that I said something very wise during that first year. At some point in the ongoing conversation about syndromes and specialists and our wrenching shift in expectations, I lifted my head and looked at my son. I said, "We have to have faith in the baby."
I don't remember saying this, and I don't know that the next few years showed great faith. We worked with a neurologist, we found a wonderful pediatrician who specialized in children with problems, we went through a slew of speech therapists and music therapists and psychologists and the like. We took Matt to oddball practitioners, too -- a hypnotherapist in Minneapolis, a listening therapist on Cleveland's East Side, a pediatrician on Cleveland's West Side who immersed a lock of Matt's hair in solution to look for chemical irregularities. Matt was tested and observed over and over; today's healthcare system would never allow such vast duplication of effort.
In the end, there was no culprit to pursue -- no smoking gun among his chromosomes, no malfunctioning organ, no negligence or error by the hospital during delivery. There was only a description. He was retarded -- significantly so, in the early years -- with what they called autistic-like behavior.
It seemed like a betrayal when we stopped looking for cures and began to accept our child as he was. Matt reached most of the developmental and social milestones, albeit later and with greater fanfare than most babies. He walked when he was 1 and a half. He said his first word after he turned 2. At 3, Matt succeeded in using his potty chair, with me, his father and my in-laws watching. We cheered so much that Matt's great-grandmother abandoned "Perry Mason" and came running; she thought we had won the lottery.
When Matt was about 4, we were walking down the street and, all of a sudden, he was not beside me. I turned around to see him saying something to an old man who was sitting on a blanket by the side of a building. "Friendly kid," the man said, waggling his fingers at me. "He came right over and started a conversation." This was a milestone as important as the others: Without prompting, without anyone calling his name or waving a toy, Matt had approached another human being.
We had our second baby, Jamie Rose, when Matt was nearly 3. That initial year was lovely but sad because it forced us to relive all we had missed with Matt. When Jamie grinned as I ran my finger over her lips that first week, when she began to watch intently as I walked from the sink to the table to the stove, when she cried as I left the room, I mourned again the gulf that had separated me from baby Matt.
When I took the two of them out, the comparison was even more painful. Jamie's lashes grew in long and black, her hair glowed in golden ringlets, her eyes shone an opal blue, and she soon learned to enjoy the attention of people in grocery stores. They'd let the ice cream melt in their carts as they cooed over her. The same people looked at her brother uneasily, not sure what to say to this child who flinched from their gaze and whirled in ceaseless activity at the end of my arm.
He grew, they grew, we all grew. Matt and Jamie were pals during their early years. She came along to all of Matt's therapeutic play groups and classes, tumbling in with the other "special" children as well as their siblings. In addition to these activities, I dragged the two of them through the full array of middle-class enrichment. I enrolled them in classes at the art museum, the natural history museum and a dance studio; they took ice-skating lessons and joined Pee Wee soccer. I stayed through each of these activities, ready to herd Matt back into the group if he ran off, wincing every time one of the other children would stop to stare at him shaking his hands around his eyes. Still, I persevered: I had a foolish hope that one of these activities might tap a hidden source of brilliance in him, make neurons dance the way they had when Mozart first heard music or Einstein saw stars. People were fond of suggesting these duckling-into-swan analogies to me.
When he was 7 years old, Matt was placed in a public school class for multihandicapped children, a cozy nest of eight such mysterious ducklings with a teacher and two aides. A bus pulled up in front of our house every morning driven by a cheerful man who sang "Volare" along the route, and Matt rolled away from me without a backward glance. I visited his class often. The teacher was droll and matter-of-fact about her assortment of quirky characters; she was fond of dismissing their quirks as an overdose of their parent's tendencies. "Look at him," she'd say, as Matt raced from one activity to another. "He's just like his father!" Enough time had passed since the shock of Matt's diagnosis that I found this funny.
I met other parents who were also at this stop on the road from grief to acceptance -- confronted by the things in our children that we couldn't understand or change, it helped to laugh. I remember going to a festival once with Vincent, a boy in Matt's class, and his mother, Carol. She and I walked together, the boys walked in front of us and we could hear their animated nonconversation. Vincent was talking about baseball, Matt was talking about cartoon characters and neither listened to the other. Carol said that she imagined that in some mirror-opposite universe, two boys were also leaving a festival with their mothers. "Those boys are saying, 'Mothers, might we stop for a snack?'" Carol pantomimed the boys' exaggerated courtesy. "And one mother answers by repeating the score of yesterday's game 10 times and the other answers with 'Go, go Gadget!'" It was an apt way of describing how estranged we sometimes felt from our children, how cosmically and comically mismatched.
Matt stayed in the multihandicapped class for three years. Toward the end of the third year, the psychologist we'd been taking him to ever since he was a toddler administered a routine I.Q. test. The next time we saw her, she rushed into her office with a bulging file of papers and a look of great excitement. "I have wonderful news," she announced. "Matt is not retarded!"
In a way, this was meaningless: Matt was the same person he had been the day before, but his unanticipated ability to match like objects in one part of the test had pushed him over the threshold to the bottom tier of normal. "That's great," I told her, but more to be polite than out of any real feeling. Even though there had been a time when I would have cherished this new, improved labeling, I knew by then that my son was a complicated being who defied categorization, that even though a new hole was being offered he would still be the wrong shape for it. And I can't say that what followed was good for him, although it's still hard to tell. He was now ineligible for the multihandicapped class. The option suggested by our school system was to put him in a regular classroom in our neighborhood school with pull-out hours in the learning disabilities resource room. In other words, he was mainstreamed.
Mainstreaming isn't so bad if you're part of the mainstream. The next four years of public school were difficult, and I take little solace in the possibility that all those other kids got a lesson in compassion by being around Matt. It was a rude shock for him to be snatched from his multihandicapped haven, in which every little triumph was celebrated and every deviation calmly corrected. In contrast, his years in the academic mainstream were ones of nearly unremitting failure. Even though his I.Q. had climbed slightly higher, he still made odd noises and had a hard time staying in a chair, his reading was below grade level and his math and penmanship were hopeless. He had two good teachers in the elementary school and one bad one, but none was equipped to do much for him. They didn't know anything about kids like him, and they hardly had enough time to devote to the rest of their students.
Most of his elementary school classmates never quite figured out what to make of him, so they kept their distance. They knew he had some kind of disability, but it wasn't one they could easily understand -- it wasn't like he was blind or lame or even severely retarded. He wasn't different enough to solicit their tenderness; he just made them nervous. Matt had a few friends who came over after school, but most of them were also marginalized, kids whose miserable family lives stunted their own ability to fit in. One of them could spend the weekend at our house without anyone in his family wondering where he was; to the outrage of all his relatives, he later turned in his father to the police for being a drug dealer. But even these guys, his fellow wretched, didn't want the stigma of being seen with him at school.
As time went on, Matt become less otherworldly but more aware of how different he was from the children in this world. He was the one who could never finish the test, the one who couldn't remember how to get from one part of the building to another, the one who completed the project last, no matter what his class was doing. I believe he was also the one child who didn't receive some kind of award or recognition at the school's graduation ceremony for fifth-graders; I noticed and hoped he didn't and fumed all the way through the ceremony.
He also had the most painful comparison right in his own home: his sister, whose abilities had outstripped his years before. When she grew old enough to get letter grades instead of "S" or "U," he was dismayed by how easy it was for her to do well. One day he came home from school and looked through a pile of her papers on the dining room table, each one perfect. "A's, all A's," he wailed, flinging her papers to the floor. "Why does she get all the sweet life?"
By the time he reached the middle school's learning disabilities program, I felt like I was sending him off every morning for a day in Beirut. It's not that the children were so much more vicious to him than they were to one another -- or to my daughter, by the time she went there -- but they had richer opportunities for torment and Matt had fewer resources to fall back on. He had always been excitable but now he had epic tantrums, both in the classroom and at home. All the therapists' advice didn't seem to help. Finally, Matt's father and I met with a psychiatrist to revisit the idea of medication -- Matt had tried Ritalin before -- and the psychiatrist talked to the three of us, then the two of us, then Matt alone. His recommendation was to get Matt out of that school. "He's depressed," the psychiatrist told us. "It's no wonder: His life is miserable."
We looked at other public school programs, then at private schools, but found no local options. Finally, we heard of a boarding school in upstate New York that sounded perfect except for the fact that it was a 12-hour drive from home. Matt and his father and I visited for a day, and Matt decided he wanted to try it for a week. The house was peaceful when we returned home; we felt a little guilty for enjoying it so much. But when I went grocery shopping, it struck me how very different life would be with my son gone. I made a spectacle of myself, weeping in the aisle with the cans of anchovies, remembering how we couldn't leave an open tin in the refrigerator when he was little or we'd find a trail of anchovy oil from the kitchen to the television. Life without him and his odd little ways seemed bleak.
His dad and I went to pick him up at the end of the week. We held each other's hands as he played basketball with a team, instead of just watching others play, and we saw people jump up and down when he almost made a point. We saw tables full of kids call his name in the cafeteria and ask him to sit with them. We saw him speak with confidence in a history class and even help another boy find the answer to the teacher's question in his book. Three girls trailed behind him as he showed us around campus, pretty girls who giggled and seemed to find him a fascinating stranger. He told us he wanted to stay at the school and I cried when we left him there, not just because I would miss him but because we had finally found a place where he fit in. Matt spent the next four years at this school, finding blissful respite from the rigors of being different.
He was a much happier boy when we moved him back home at the age of 18. As a special-education student, he was eligible for four more years of public school education. We hoped things would be easier for him in the high school than in the middle school, and they were. The high school draws kids from all the city schools, plus it pools special-education students with other districts. There was a critical mass of kids like Matt at the high school. They weren't the mainstream, but they were a sizable and exuberant stream of their own.
Matt had four good years there, which is more than you can say for most people. He made lots of friends, had two girlfriends and got work experience through the school's vocational department. He had three excellent teachers and did well in his classes. He was a minority in more than one way -- our high school is about 70 percent African-American and he is not -- and he absorbed the school's mantra of racial harmony so well that he now buys just about anything marketers pitch to blacks. I'm sure he was the only 22-year-old white guy to buy a copy of the movie "Waiting to Exhale" the day it was released, and this is just one of the things I love about him.
When he graduated, my entire family from California and his dad's entire family from New York came. At the ceremony, a school administrator warned the 3,000 people in the audience against rowdy applause, but there were enough of the people who love Matt to do the wave and to make enough noise and we did.
After Matthew was diagnosed all those years ago, my Aunt Helen sent me a letter right away. "When Stephen was born," she wrote, "he was our greatest sorrow. Now he's our greatest joy."
Lucky me, I have many joys. It would be hard to say which is the greatest, but I can say unequivocally that Matt is one of them -- at least, most of the time. He has the kind of life that many of us wish for our children. He's in good health, eats a lot of vegetables and changes his sheets once a week. He has an apartment, a compatible roommate, two sports channels and season tickets to the Cleveland Indians. He has work that he enjoys, a job bagging groceries that showcases the almost courtly good manners he must have picked up from some of his well-bred boarding school friends. "It's been a pleasure to help you today, ma'am," I hear him say to customers as I hunker near the 40-pound bags of dog food to watch him work. His customers like him: He receives an extraordinary amount of money in tips, something I've decided must be some kind of cosmic compensation for middle school. His bosses like him, too: He was named "Employee of the Month" once and then "Employee of the Year," for which he received a gas grill the size of a golf cart.
People point to Matt's successes and tell me they have something to do with my great mothering skills. I don't feel I can take that much credit for this complex young man; I can only marvel at the ways in which my "faith in the baby" utterance was prescient. The essence of Matt was there from the beginning, written into his genetic code and embellished by the unique events of his gestation. He has his father's concern for order and cleanliness as well as -- surprise! -- his ability to charm a room full of people. He has my lack of enthusiasm for talking on the phone, but also shares both grandmothers' and my feeling for words, especially big Latinate bombs. While his reading level is about that of the average American -- good enough to read USA Today -- his speech is loaded with words like "fastidious" and "apprehensive."
Of all my father's 11 grandchildren, I think my son is the one who resembles him the most. Matt tells a joke just like my father does, he walks like my father and even his few remaining noises remind me of my father. Matt often makes a low, nasal humming sound; people who don't know him hear it from another room and think a machine has gone bad. My father also hums a lot, a kind of mysterious drone while he's gardening or washing the dishes that my siblings and I think might be "Santa Lucia." When the two of them sing at family functions, the rest of us exchange glances.
At the very least, Matt has taught me as much as I taught him. I've always been shy, with hardly enough nerve to face the world with my own imperfections. It was harder still to face it alongside my son's more unorthodox flaws, which drew attention to the two of us even when he wasn't setting off fire alarms in airports (just once) or playing with 5-year-old toys when he was 15 (many times) or doing a little Rumpelstiltskin dance as he walked down the street (still does it once in a while). I'm used to faces whipping around for a second look, and there are many times I would shrink from rather than champion him. It was hard for me to be in public with my son. It is still hard at times, and that's a terrible thing for a mother to admit.
My daughter almost never has such qualms. Jamie was raised not only with her brother's differences but also with those of his peers and has always been comfortable with the range of alterations on "normal." One of Matt's friends is the king of trivia -- ask him who sang "The Duke of Earl," who held the National League record for home runs in 1972, what the capital of Mozambique is, anything, and he knows, but he can't button his shirt. Another can't add two and two but can drive a car. Jamie learned early on that abilities don't come in clumps, that just because someone can do one thing doesn't mean he can do another. She became sensitive to these hidden surprises and was unfazed by the scorn of people who weren't.
Early on, Matt's father and I decided that the world has two camps: those who sneer at our son's differences and those quirky souls who enjoy them. It's gratifying when we meet strangers in the latter camp. A few years ago, I took Matt to a ballgame in which the Cleveland Indians clinched the championship for the American League Central Division. The Indians were playing the Baltimore Orioles, and Matt and I had great seats between home and first, just four rows from the field. The only drawback was that the row in front of us was filled with guys from Baltimore, who sat there watching glumly as the Indians hammered their team. I was afraid that Matt might piss one of these guys off. Matt is almost always on his feet. He loves to recite the provenance of each player: the various teams and positions he's played, the honors he's received over the course of his career. I often tell him to shut up and watch this game, the one we paid to see, but he's in thrall to the Game, all its players, all its moments.
At the Baltimore-Cleveland game, I was sure Matt was driving the guys in front of us crazy, especially the one guy he leaned over every time a batter took his stance. The guy would turn his head toward us slightly, which is sometimes a polite indication -- like a skunk shaking its tail -- that something bad is in the works. I kept pulling Matt down; he kept standing up again. Finally, after Matt spat out a long string of past engagements for Kevin Bass -- that he had started with Milwaukee in 1982, then moved on to Houston, then to San Francisco and then back to Houston before he got traded to Baltimore -- the guy turned all the way around. He removed his cap and set it on the seat next to him and I got ready to block a punch. But the guy grinned. "You forgot New York," he told Matt. "Kevin had a stint in New York between San Fran and Houston." Matt's mouth dropped open as he considered this, then he shook his fists around his eyes. I almost did, too.
We still run into members of the other camp, and it's still as painful as ever. Not long ago, Matt and I were at the airport waiting for a flight to California. The plane was delayed so we decided to go back to one of the fast-food counters in the lobby and get something to eat. It was crowded and I figured it would take us 10 minutes to reach the counter, but was afraid Matt still wouldn't have figured out what he wanted by the time the woman asked for his order.
"Look at the menu," I instructed, pointing to the pictures of sandwiches over the counter. "Figure out what you want now so that you don't keep everyone waiting." He rocked on his heels and hummed.
By the time the woman asked what he wanted, he was still rocking. He looked at the breakfast side of the menu. He looked at the lunch/dinner side of the menu. I gritted my teeth and stepped away.
Then a man in the line started making long, operatic sighs. He looked at the people around him to find a kindred spirit in exasperation. He settled on me, not realizing that Matt and I were together. Matt was still trying to decide. The woman at the register was patient. The man made large gestures of annoyance -- a hand thrown to his forehead, a slight kick at his briefcase. He looked at me again and groaned.
I realized I could just look away and pretend that this man wasn't making ugly faces at my son. I've done it in the past. Instead, I gave way to 24 years of anger at such boorishness. "Do you have a problem?" I asked him.
He pointed to my son. "You'd think after all this time in line he'd know what the hell he wanted. What is he, a retard or something?"
"Yes," I said. "Do you have a problem with that?"
The man was only slightly abashed. "Are you his mother?"
I nodded.
"Then you should be helping him or something. He shouldn't do this. He shouldn't be able to just stand up there and ..." He sputtered and stopped. The other people in the line regarded us carefully.
"He has as much right as anyone else to order lunch." It felt as if the whole airport was listening.
By that time, the woman behind the counter was handing Matt's order to him. Her arm hung in the air as he looked back at me, his mouth a slightly whiskered circle of wonder.
The man's face deepened from capillary-streaked pink to purple. He shuddered inside his black suit. He fiddled with his watch. "I'm sorry," he finally said, looking back up.
"No, you're an asshole." I was calm as the words left my mouth, but as soon as they did I started to cry. Matt was shocked. He almost walked away from the cashier without his change.
"What happened?" he asked several times as we walked toward our plane. He knew how unlikely it was for me to make a scene -- he makes scenes, his father makes scenes, but his mother usually keeps quiet. He touched my shoulder a few times. He unwrapped his burger and offered me a bite. He put his arm around me. Then he forgot about the confusion 20 feet back. He hummed and began to walk a little faster, his thoughts already in California, his feet already touching down in a circle of people who love him.
salon.com
About the writer
Kristin Ohlson is a Cleveland writer whose short stories have appeared in Indiana Review and Ascent; her nonfiction has been published in the New York Times, Ms., Discover and Food & Wine.
Thursday, February 23, 2006
Hope Your Day Is Wonderful!
Sorry that I haven't posted for a while! I've been sick with several colds and a stomach bug -- YUCK! Just when I thought I was getting better I woke up yesterday with ANOTHER cold. Jack was sick for about a week as well...nasty cold but he's all better now.
Jack is continuing to walk with his walker and is practicing really hard at getting up to his walker all by himself. Yesterday I found jack with the walker toppled over and his face smooshed into the carpet...and you know what? He was LAUGHING! That's my little trooper for ya!
Tomorrow we have Jack's IEP meeting. It will be our first meeting with the school district. Here is the basic breakdown of an IEP -- Individualized Education Plan. I am happy and sad all at the same time. I know school will be good for Jack but I am sad because up until now I've always been a part of what he learns. I've sat through every therapy session for the past three years -- it's hard to imagine not being there when he's being worked with. He doesn't have many words and I am worried that no one will know what he needs! I know this can be a good thing because it will force him to communicate but I hate to think of him frustrated with others not knowing what he wants or needs. I know he'll be fine and I know I will too -- I just can't believe it's time!
Well, I must run to get Jack's glasses fixed. The little screw came out and my hands are way too big to use that tiny screwdriver! The funny thing is, Jack keeps asking for his glasses. I guess he misses them! So I MUST get them fixed today. He even tried to steal mine this morning! Took them right off my face and put them on his...boy, how do you explain that one????
Jack is continuing to walk with his walker and is practicing really hard at getting up to his walker all by himself. Yesterday I found jack with the walker toppled over and his face smooshed into the carpet...and you know what? He was LAUGHING! That's my little trooper for ya!
Tomorrow we have Jack's IEP meeting. It will be our first meeting with the school district. Here is the basic breakdown of an IEP -- Individualized Education Plan. I am happy and sad all at the same time. I know school will be good for Jack but I am sad because up until now I've always been a part of what he learns. I've sat through every therapy session for the past three years -- it's hard to imagine not being there when he's being worked with. He doesn't have many words and I am worried that no one will know what he needs! I know this can be a good thing because it will force him to communicate but I hate to think of him frustrated with others not knowing what he wants or needs. I know he'll be fine and I know I will too -- I just can't believe it's time!
Well, I must run to get Jack's glasses fixed. The little screw came out and my hands are way too big to use that tiny screwdriver! The funny thing is, Jack keeps asking for his glasses. I guess he misses them! So I MUST get them fixed today. He even tried to steal mine this morning! Took them right off my face and put them on his...boy, how do you explain that one????
Monday, February 13, 2006
Happy Anniversary!
Tomorrow Jason and I are married 5 years! I can hardly believe it. Time has gone so fast! Happy Anniversary to us! Here are a few pictures from that special day.
I hope to surprise Jason with a nice dinner out tomorrow night -- so shhhh, no one tell!!!!
I hope to surprise Jason with a nice dinner out tomorrow night -- so shhhh, no one tell!!!!
Thursday, February 09, 2006
MARK THIS DAY!!!!!
Wow, I can't believe what I am about to share! Just look how much has changed since my last post! Here is a copy of an e-mail I sent to EVERYONE in my address book!!!!
I really wanted to share this exciting day with all of you.
Jack is walking with his walker independently!
He has come so far and has worked so hard and today he’s finally walking. Everyone said it would happen “any day now”, and boy were they right! I’ve also been reminded that once the walker is mastered independent steps are right around the corner.
Just wanted to share a link to a video of this amazing accomplishment…it may take a while to load for those with dial up!
Thanks for always caring about Jack.
Click on the picture to see the video!
I really wanted to share this exciting day with all of you.
Jack is walking with his walker independently!
He has come so far and has worked so hard and today he’s finally walking. Everyone said it would happen “any day now”, and boy were they right! I’ve also been reminded that once the walker is mastered independent steps are right around the corner.
Just wanted to share a link to a video of this amazing accomplishment…it may take a while to load for those with dial up!
Thanks for always caring about Jack.
Click on the picture to see the video!
Saturday, February 04, 2006
Video of Jack and his walker!
I wanted to show you all how Jack's doing with his walker...he was in a good mood so I had daddy get the camera!
Tuesday, January 31, 2006
The Marathon Month
Hello,
I have added some new pictures! Check out Jack's Photo Albums The pictures are hosted by Snapfish -- you need to sign up using your e-mail address. It's free, quick and painless, I promise! Please let me know if you have any questions.
Jack had a great PT session this morning. It's usually the big things that get us excited, but today I noticed some subtle changes in Jack. Today he was leaning forward and using his walker properly. It was the first time it truly sunk in. I could see it registering on his little face...he smiled and laughed (which is RARE during a tough PT session) and it finally seemed to click for him. I can't wait to practice some more tomorrow. Things are going to change -- I can FEEL it (yes, I just referenced a Beck song, LOL).
On Monday we saw Jack's developmental pediatrician/Rehab doctor. She is an amazing doctor. She sort of ties everything together for us locally and loads us up with all the prescriptions for therapy and equipment. She's a good resource to have and I sort of just throw everything at her that's happened in recent months. I am glad to have her as part of our team.
This month has been beyond hectic. I am so glad tomorrow is February! We've truly had appointments every day of the month. We've also showed our house THIRTEEN times...that's 13 times I had to load the poor dog into the back of the van...that's 13 times I had to clean the house to a spotless condition, that's 13 times I had to drag Jack and the dog out of the house for 2 hours at a time. I am SO READY FOR THIS TO BE OVER!!!! Ahh, feels a bit better now that I've unloaded all of that. I cannot wait!
We're also trying to get the transition from Early Intervention (Jack's current therapies) to preschool and hospital therapy. Any which way we look at it we are going to be one busy family. Jack will most likely go to school in the mornings several days a week. Since he is getting botox he will need intensified therapy to maximize the benefits. So that means traveling to Middletown 4 or 5 times a week...on top of our usual doctor/specialist visits, trips to CHOP and school. I know we can do it. I know we have to do it! Luckily the intense therapy won't last forever and I know this is going to help Jack. Just somebody check in on us every now and then to make sure we know what day it is! LOL, just kidding!
Well, it's rather late for me to be on the internet and I still have toys to put away! I hope everyone is doing well. Thanks for reading.
Tuesday, January 24, 2006
Botox Evaluation at CHOP
We had our big appointment yesterday at CHOP. Jason took the day off to go with us -- I am so glad he has the opportunity to do this when these major appointments come up. We left the house around 8:00 am and made pretty good time to Philly (even stopping for Starbucks 1/2 way there). I love the hospital campus, it's nice (well we've only seen one part of it called the Seashore House)...the parking garage is located just steps away and the building is pretty easy to navigate.
We saw Dr. Drake a doctor of Physical Medicine for the Botox evaluation. He was so, so nice and Jack liked him too! He looked at Jack's muscles and examined his range of motion and even had Jack walk with a walker in his bare feet. He thinks Jack is a perfect candidate for Botox and feels he will do quite well with the injections. Jack will get 10 different areas injected. 3 places on each leg and 4 areas on his right arm. He will be sedated for the procedure and we will most likely end up spending several hours at the hospital until it's all done. The actual injections take only minutes to do, but they have to be very precise and actually use electrodes to be sure they are in the right muscle. It sounds very thorough.
I am so excited -- I have read so many good experiences about Botox and how well it works for kids with CP. The doctor thinks Jack will really be able to "take off" walking at first with his walker and then independently!!!!!!
Sometimes when I am rocking Jack to sleep I imagine the day he takes his first steps. I've even had dreams of Jack walking and when I wake up I am left happy and somewhat sad at the same time. It feels so good to know there's so much out there to help kids like Jack. With school, botox, and a new house waiting for us life certainly isn't boring over here!
Jack had a hard time going to sleep last night and when he started crying I went to rock him a little and noticed he felt a little warm. I thought it was just hot in his room and didn't think much of it. He still didn't settle and Jason went in to sit with him for a while and we noticed Jack's nose was running like a faucet! I took his temperature and it was 99.3 which isn't terrible but still above normal. We gave him a little medicine and he finally went to sleep. Today his nose continues to run and he's got a cough and a slight fever. He's acting a little under the weather too. I hope it passes quickly, I will update when I can.
We saw Dr. Drake a doctor of Physical Medicine for the Botox evaluation. He was so, so nice and Jack liked him too! He looked at Jack's muscles and examined his range of motion and even had Jack walk with a walker in his bare feet. He thinks Jack is a perfect candidate for Botox and feels he will do quite well with the injections. Jack will get 10 different areas injected. 3 places on each leg and 4 areas on his right arm. He will be sedated for the procedure and we will most likely end up spending several hours at the hospital until it's all done. The actual injections take only minutes to do, but they have to be very precise and actually use electrodes to be sure they are in the right muscle. It sounds very thorough.
I am so excited -- I have read so many good experiences about Botox and how well it works for kids with CP. The doctor thinks Jack will really be able to "take off" walking at first with his walker and then independently!!!!!!
Sometimes when I am rocking Jack to sleep I imagine the day he takes his first steps. I've even had dreams of Jack walking and when I wake up I am left happy and somewhat sad at the same time. It feels so good to know there's so much out there to help kids like Jack. With school, botox, and a new house waiting for us life certainly isn't boring over here!
Jack had a hard time going to sleep last night and when he started crying I went to rock him a little and noticed he felt a little warm. I thought it was just hot in his room and didn't think much of it. He still didn't settle and Jason went in to sit with him for a while and we noticed Jack's nose was running like a faucet! I took his temperature and it was 99.3 which isn't terrible but still above normal. We gave him a little medicine and he finally went to sleep. Today his nose continues to run and he's got a cough and a slight fever. He's acting a little under the weather too. I hope it passes quickly, I will update when I can.
Friday, January 20, 2006
School Daze...
First of all, sorry for my lack of updates lately! We've been showing the house nearly every other day and we've had many dr and therapy appointments this month as well! I can't believe it's almost the end of January...We are getting excited about moving. Let's all hope I can post a SOLD SIGN soon!!!
We saw Jack's neurologist earlier this month -- and got a good report. No medicine changes or anything this time. Short and sweet -- and I hope it stays that way! We go back in 4 months for blood work and another check up.
Jack also saw his eye doctor and we are now patching the right eye 6 hours a day...poor Jack, he hates it but he's tolerating it fairly well. We will go back in a month for another exam. We are still hoping to avoid surgery.
We had his evaluation for preschool this morning...he was such a good boy. We had to go to a new building and meet new people and Jack jumped right in and started showing them all he can do. There's actually one final meeting set for next month that will determine how long he'll go and for how many days a week. He'll be getting OT, PT, ST, and vision therapy as well as class time when he goes to school. There's even a yellow bus that can come pick him up and everything!!! I haven't agreed to that yet -- I figured I'd want to drop him off the first few times and then, perhaps, I'll consider the bus. Our baby Jack isn't a baby any more...time to start calling him big boy Jack!
He unfortunately had a bad tummy ache for a few days...Although when he was cranky I didn't know it was his stomach that hurt. It turns out he was severely constipated...it seems I need to find a new balance for the Miralax...either he gets too much or too little and both aren't good. I am probably going to try a half dose every day vs. a full dose every other day. Keep your fingers crossed for his little tummy.
Jack now weighs 26 pounds and is 35 inches tall! That's pretty good growing -- even though he's still on the small side for his age. His appetite has been great and he continues to eat and eat and eat! A new favorite is "big kid" cereal. He's enjoying corn pops and honey combs! LOL. He also had his first Oreo Cookie dipped in milk the other night. The look on his face was priceless. Almost as if he couldn't believe anything could taste quite that good! He was a chocolatey mess -- way too cute!
I also realized I haven't taken any new pictures since Christmas! I have to get on the ball here -- or there won't be any January 2006 photo album! That would be a first. So for now, here's one of the little family on Christmas Day.
Wednesday, January 04, 2006
Umpa...
We have some really terrible family news. Jason's grandpa Jim (we called him Umpa) passed away early yesterday morning. He was a wonderful guy -- handsome, smart, and comical! He loved to top off everyone's wine glass and watch us all have a good time. He adored Jack as well. Jack was actually named after his late wife Jackie who passed away right before Jack was born. Umpa came to the NICU every other day and sometimes got scolded by the nurses (didn't always ring in before hand...lol) but they learned to love him too. We miss him so much and are still in shock. Our thoughts are with Sarah and her family as well. Services are being held later this week.
In the past week we listed our house for sale and over the three day weekend worked like we've never worked before. Our house is SPOTLESS! Never has it looked this good! LOL -- we actually couldn't have picked a better time for all of the repairs and cleaning because we had our very first showing yesterday afternoon. I still don't know what they thought but I will find out hopefully today.
Jack has been hugely cranky the past week. I was near my wit's end!!!!!!! He would cry at everything he would want to be held and then cry because he wanted down...one toy would make him laugh the next would have him in tears...I think it may be partly due to both mommy and daddy being super busy the past few days and also I noticed finally, yes finally, the last of his two year molars are about half way through. I am not one to blame everything on teething, but now his crankiness makes a little more sense.
He has put two words together on several occasions....he pointed to a big ball and said "Ball, go" meaning he wanted me to throw the ball!!!!!!! He also said "Pup go" when the puppy was in his way!!!!! LOL. He still lacks what I would call a functional communication system which leads him (and mom) to become frustrated but I am SO PROUD, SO VERY PROUD of his accomplishments. His little voice is so cute and it's so nice to hear him use it.
Our holidays were very nice. I spent three days cooking and haven't cooked since (thank's Grandma Linda!) LOL we had our families over and had a wonderful day. Jack loved opening presents!!
This month we see a lot of doctors -- but top on my list is the CHOP CP Clinic -- where he'll finally be evaluated for botox!
I added some new pictures -- be sure to check them out!
I am probably leaving out a ton of stuff, but I am tired and will hopefully be able to post more.
In the past week we listed our house for sale and over the three day weekend worked like we've never worked before. Our house is SPOTLESS! Never has it looked this good! LOL -- we actually couldn't have picked a better time for all of the repairs and cleaning because we had our very first showing yesterday afternoon. I still don't know what they thought but I will find out hopefully today.
Jack has been hugely cranky the past week. I was near my wit's end!!!!!!! He would cry at everything he would want to be held and then cry because he wanted down...one toy would make him laugh the next would have him in tears...I think it may be partly due to both mommy and daddy being super busy the past few days and also I noticed finally, yes finally, the last of his two year molars are about half way through. I am not one to blame everything on teething, but now his crankiness makes a little more sense.
He has put two words together on several occasions....he pointed to a big ball and said "Ball, go" meaning he wanted me to throw the ball!!!!!!! He also said "Pup go" when the puppy was in his way!!!!! LOL. He still lacks what I would call a functional communication system which leads him (and mom) to become frustrated but I am SO PROUD, SO VERY PROUD of his accomplishments. His little voice is so cute and it's so nice to hear him use it.
Our holidays were very nice. I spent three days cooking and haven't cooked since (thank's Grandma Linda!) LOL we had our families over and had a wonderful day. Jack loved opening presents!!
This month we see a lot of doctors -- but top on my list is the CHOP CP Clinic -- where he'll finally be evaluated for botox!
I added some new pictures -- be sure to check them out!
I am probably leaving out a ton of stuff, but I am tired and will hopefully be able to post more.
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