I told Will that when we get home from Christmas vacation on January 2nd, there will be no more play diapers (pull-ups) and he will wear undies. I've been working on potty training on and off for at least a year, but Will has a fit when I try to put undies on him and he's big enough now that he can just take them right off.
The forewarning has helped. He tells me on a daily basis that he will wear undies in January and that diapers will be all gone. :)
I found these special undies online. I'm hoping they'll make it easier. The site also carries a potty watch that will go off every 30, 60 or 90 minutes an play fun music to remind you to potty. I'm ordering it today. I'll keep you posted on how it goes ...
P.S. I found a coupon code online that saved me 15% - BDAYDCMR.
Friday, December 26, 2008
Wednesday, December 24, 2008
The Big Christmas Eve Question ...
So Tim and Will are sitting on the couch looking at stockings and Will reaches up and touches Tim's unshorn face. Tim says, "Will, do you have whiskers?" Will responds, "No. No whiskers ... just boogers."
Merry Christmas
Merry Christmas
Sunday, December 21, 2008
My first unprompted kiss!!!
I've been working on getting a kiss from my son for years. At 3, he would give me eskimo kisses by rubbing my nose and his together. That's as far as I ever seemed to get.
Will suddenly started giving actual kisses right before his 4th birthday a couple months ago. Unfortunately, it was our cat, Kitty, that was the focus of all of his love. We have been very jealous of the cat, let me tell ya. We even resorted to calling kisses "Kitty kisses" so that we might get one. I'd have to say, "Will, can I have a Kitty kiss?" to potentially get any of his affection. The kisses have slowly been easier to get, but we still would have to request or sometimes even beg or negotiate for one.
Well, today was my lucky day!!! Will got out a puzzle that he wanted to work on and I was sitting on the floor helping to turn over the pieces and he runs up to me an gives me a big smacker right on the lips! I about sobbed. It was a beautiful moment.
Will suddenly started giving actual kisses right before his 4th birthday a couple months ago. Unfortunately, it was our cat, Kitty, that was the focus of all of his love. We have been very jealous of the cat, let me tell ya. We even resorted to calling kisses "Kitty kisses" so that we might get one. I'd have to say, "Will, can I have a Kitty kiss?" to potentially get any of his affection. The kisses have slowly been easier to get, but we still would have to request or sometimes even beg or negotiate for one.
Well, today was my lucky day!!! Will got out a puzzle that he wanted to work on and I was sitting on the floor helping to turn over the pieces and he runs up to me an gives me a big smacker right on the lips! I about sobbed. It was a beautiful moment.
Sunday, December 14, 2008
Observations of Will since birth (up to 24 months)
0-6 months
• Slept on stomach. Would not sleep on back
• Never liked looking at faces
• Was happiest looking at his mobile or other hanging or waving items
• Smiled rarely – first smile probably after 2-3 months
• Crabby, not colicky
• Not a good sleeper
• Breastfed first month, then bottle fed rotating breast milk and formula till 2 months old, then on solid formula
• Very constipated after formula feeding started and given karo syrup with bottles to help
• Scratched at his face and head a lot. Had to trim nails weekly and wear baby gloves till he was about 5 months old
• Started rolling over around 5 months old
6-12 months
• Never liked to sit and was slow to do so. Preferred laying on stomach. Still likes to play laying on stomach. (Have since discovered that this is a sign that he may have abdomen pain)
• LOVED shiny objects, fans, car seat latches
• More fascinated with the screw on a toy than the toy itself.
• When introduced to solid foods, he would not pick up and feed himself anything slimy – fruits or vegetables.
• Started babbling around 8 months old – mama first, then dada, nana, gi. Never felt specific
• Understood no, kitty, not sure what else
• Loved to stand, not sit and started cruising around 10 months old.
• Learned to clap around 10-11 months old.
• Would imitate head movements and some sounds at 10-11 months old.
• Did not prefer looking at faces, but has many smiles
• Severe skin itchiness - scratches all over body. Would rub him down with itch cream and soothing lotion, no real difference.
• Severe drooling since 5 months old.
• Was very crabby until about 9 months old.
• Was fed a bottle during the night until 9 months old.
• Lots of colds.
• Quit babbling around 10-11 months old.
• Started having tantrums and arching his back when we would come into the house at 11 months old.
• Wouldn’t respond to name often or consistently.
• If holding him, and called his name he wouldn’t look at you.
• If you made animal noises in his ear while holding him he wouldn’t look at you or in your direction.
• Preferred mom to anyone else, but will go easily to strangers.
• Shows no affection to us, only wants to be held to see things or go somewhere.
• Loves kids and will get very excited when he sees a child.
12-15 months
• Started walking at 12-13 months.
• At 15 months still fed baby food fruits and veggies because he won’t pick up slimy foods.
• Started some babbling again around 14 months.
• At 15 months, he had no words.
• LOVES spinning objects, turns over cars and spins wheels, balls – attempts to spin anything.
• Not upset if mom or dad leaves and is left with strangers.
• Doesn’t look in the direction mom or dad is looking.
• No pointing or waving or shaking his head no.
• Doesn’t bring things to us to show us.
• Plays mostly by himself, does not want to be read to, just wants to flip through and look at books alone.
• Still drools a ton.
• Will imitate noises and head movements some.
15-18 months
• Started going to see a speech therapist.
• Have an occupational therapist coming to our home. She's teaching us a lot about how to handle tantrums and how to give the him sensory input he craves, such as spinning and joint compression. Incorporating these things helps to keep him more focused and is a great reward for cooperation.
• Does wave some but needs help to get started.
• At 15 months started to lay his head on our shoulders at bedtime.
• Brings books to us to read.
• Seems to understand more words like book, pig, cow, drink, in, out, no, tongue, and belly.
• Hands us toys sometimes.
• LOVES Baby Einstein.
• At almost 16 months he is drooling a ton! He was in 5 different shirts today.
• When I say uh-oh, he does a closed mouthed version with just the pitch of the sound.
• Can do simple puzzles.
• Seems to spin everything even more.
18-24 months
• Went to see a speech therapist for a couple of months, but had to stop because of Will's obsession with the elevator doors. He would claw at the therapy room door and not focus at all because all he wanted to do was get back to those elevators.
• Babbles a lot more, especially with his fingers in his mouth.
• Still drools a lot, but seems to be lessening.
• Has all his teeth
• Walks well, but falls a lot.
• Is insensitive to pain. Can fall and bloody knees and not cry or whimper. Just hops up and keeps going.
• Plays well with his toys, but likes to spin a lot.
• Loves to bounce or swing
• Started gluten and casein free diet at 18 months and has been on it a week and a half. Seems to be more alert and responsive to us, but still has the itchy rash.
• Does a lot of complete sentences by just humming different tones. Carries on conversations that way with himself, but no real words.
• At 19 months is able to recognize about half the alphabet on his Leap Frog toy. He points to shapes in books when asks and also points to other objects in books when asked.
• Knows his ears, eyes, nose, head, mouth, toes, belly button and hoozie.
• Doing a lot more imitation of noises and actions.
• Loves to be chased and tickled.
• Is a lot more attentive, less irritable and more responsive to requests.
• At 23 months he recognizes letters by their sounds and can use a toy computer (for ages 5+) with no problem. Plays almost all the games on it.
• At 23 months we started having a speech therapist come to our home.
• Says Dada and Mama upon request. No other words.
• At 24 months we started going to a 3-week parent training at Judevine Center for Autism. What a fantastic opportunity!!!
28 months
• Obsessed with garage doors. Wants to watch them open and close all the time. We reward him for making requested letter sounds or signs by opening or closing the doors.
• Slept on stomach. Would not sleep on back
• Never liked looking at faces
• Was happiest looking at his mobile or other hanging or waving items
• Smiled rarely – first smile probably after 2-3 months
• Crabby, not colicky
• Not a good sleeper
• Breastfed first month, then bottle fed rotating breast milk and formula till 2 months old, then on solid formula
• Very constipated after formula feeding started and given karo syrup with bottles to help
• Scratched at his face and head a lot. Had to trim nails weekly and wear baby gloves till he was about 5 months old
• Started rolling over around 5 months old
6-12 months
• Never liked to sit and was slow to do so. Preferred laying on stomach. Still likes to play laying on stomach. (Have since discovered that this is a sign that he may have abdomen pain)
• LOVED shiny objects, fans, car seat latches
• More fascinated with the screw on a toy than the toy itself.
• When introduced to solid foods, he would not pick up and feed himself anything slimy – fruits or vegetables.
• Started babbling around 8 months old – mama first, then dada, nana, gi. Never felt specific
• Understood no, kitty, not sure what else
• Loved to stand, not sit and started cruising around 10 months old.
• Learned to clap around 10-11 months old.
• Would imitate head movements and some sounds at 10-11 months old.
• Did not prefer looking at faces, but has many smiles
• Severe skin itchiness - scratches all over body. Would rub him down with itch cream and soothing lotion, no real difference.
• Severe drooling since 5 months old.
• Was very crabby until about 9 months old.
• Was fed a bottle during the night until 9 months old.
• Lots of colds.
• Quit babbling around 10-11 months old.
• Started having tantrums and arching his back when we would come into the house at 11 months old.
• Wouldn’t respond to name often or consistently.
• If holding him, and called his name he wouldn’t look at you.
• If you made animal noises in his ear while holding him he wouldn’t look at you or in your direction.
• Preferred mom to anyone else, but will go easily to strangers.
• Shows no affection to us, only wants to be held to see things or go somewhere.
• Loves kids and will get very excited when he sees a child.
12-15 months
• Started walking at 12-13 months.
• At 15 months still fed baby food fruits and veggies because he won’t pick up slimy foods.
• Started some babbling again around 14 months.
• At 15 months, he had no words.
• LOVES spinning objects, turns over cars and spins wheels, balls – attempts to spin anything.
• Not upset if mom or dad leaves and is left with strangers.
• Doesn’t look in the direction mom or dad is looking.
• No pointing or waving or shaking his head no.
• Doesn’t bring things to us to show us.
• Plays mostly by himself, does not want to be read to, just wants to flip through and look at books alone.
• Still drools a ton.
• Will imitate noises and head movements some.
15-18 months
• Started going to see a speech therapist.
• Have an occupational therapist coming to our home. She's teaching us a lot about how to handle tantrums and how to give the him sensory input he craves, such as spinning and joint compression. Incorporating these things helps to keep him more focused and is a great reward for cooperation.
• Does wave some but needs help to get started.
• At 15 months started to lay his head on our shoulders at bedtime.
• Brings books to us to read.
• Seems to understand more words like book, pig, cow, drink, in, out, no, tongue, and belly.
• Hands us toys sometimes.
• LOVES Baby Einstein.
• At almost 16 months he is drooling a ton! He was in 5 different shirts today.
• When I say uh-oh, he does a closed mouthed version with just the pitch of the sound.
• Can do simple puzzles.
• Seems to spin everything even more.
18-24 months
• Went to see a speech therapist for a couple of months, but had to stop because of Will's obsession with the elevator doors. He would claw at the therapy room door and not focus at all because all he wanted to do was get back to those elevators.
• Babbles a lot more, especially with his fingers in his mouth.
• Still drools a lot, but seems to be lessening.
• Has all his teeth
• Walks well, but falls a lot.
• Is insensitive to pain. Can fall and bloody knees and not cry or whimper. Just hops up and keeps going.
• Plays well with his toys, but likes to spin a lot.
• Loves to bounce or swing
• Started gluten and casein free diet at 18 months and has been on it a week and a half. Seems to be more alert and responsive to us, but still has the itchy rash.
• Does a lot of complete sentences by just humming different tones. Carries on conversations that way with himself, but no real words.
• At 19 months is able to recognize about half the alphabet on his Leap Frog toy. He points to shapes in books when asks and also points to other objects in books when asked.
• Knows his ears, eyes, nose, head, mouth, toes, belly button and hoozie.
• Doing a lot more imitation of noises and actions.
• Loves to be chased and tickled.
• Is a lot more attentive, less irritable and more responsive to requests.
• At 23 months he recognizes letters by their sounds and can use a toy computer (for ages 5+) with no problem. Plays almost all the games on it.
• At 23 months we started having a speech therapist come to our home.
• Says Dada and Mama upon request. No other words.
• At 24 months we started going to a 3-week parent training at Judevine Center for Autism. What a fantastic opportunity!!!
28 months
• Obsessed with garage doors. Wants to watch them open and close all the time. We reward him for making requested letter sounds or signs by opening or closing the doors.
WILL’S HISTORY – written 10/24/06
Will was born on October 20, 2004. Birth was pretty stressful because Will’s heart rate dropped several times during labor, so after 2 hours of pushing with no progress, he was born via c-section. From the moment we brought him home, our lives would be nowhere near the same.
I have stayed home and taken care of Will since he was born, so I’ve been able to really observe his behaviors. He was an extremely fussy and hard to soothe baby. Not colicky, just irritable all the time and he didn’t sleep well. He was also very constipated.
We called his doctor’s office about the constipation. They said to add a teaspoon of Karo syrup to his bottles. We did and it helped a little. For about 6 months he had Karo syrup in his bottles and he became extremely chunky. His bottles were one of the few things he enjoyed, so I lived to feed him.
During the first 6 months, Will rarely smiled or showed an interest in looking at us. He only cooed and got happy when we would lay him in his crib and turn on his mobile. Will hit his milestones perfectly until about 7 months of age. At that point, he really didn’t like to sit up, and if he did, it would be in the “W” position (basically sitting on his feet, but with his feet coming out to the sides of his rear end).
I would take him on walks in his stroller with other moms and their babies of the same age. While their kids eagerly sat up in their strollers soaking up all the exciting things around them, Will always just laid there with an uninterested stare on his face. He started babbling for a couple months and then stopped around 10-11 months of age. He walked at 12 - 13 months.
It was at one of our Parents As Teachers sessions with our trainer Jennifer, that something finally just clicked in my brain. She was doing his 1 year checklist (I think Will was actually about 14 months old when this happened) and asked me a bunch of questions. Later, after thinking about my responses, I realized something just wasn’t right and I started researching on the Internet. I came across quite a few sites about autism and some of the signs rang true and some didn’t. But one site had a list of signs that said something about how your child might turn trucks and cars over and spin their wheels instead of pushing them around. I started bawling because I knew it was Will. Tim and I had a big discussion and I cried a lot. He was in shock, but didn’t want me to get too worked up before we knew anything for sure. So, I wrote this email to Jennifer:
Hi Jennifer,
Hope you don’t think I’m a nut, but I’ve been doing some thinking since our visit. Some of the questions you asked got my wheels turning. Since Will was a tiny little thing I’ve always wondered about his behavior and thought he was a little different than other babies his age.
Here’s a list of what I mean:
1. He doesn’t seem to show affection to us. He’s never snuggled and has laid his head on our shoulders approximately 5 minutes total since he was able to lift his own head.
2. He really didn’t smile hardly ever until he was past 6 months old.
3. He doesn’t react to his name consistently. I have to call his name several times and even then sometimes never get a response. Occasionally he looks right away. If I’m holding him, 95% of the time I cannot get him to look at me even though I say his name over and over and over.
4. He spins balls a lot and doesn’t push cars or trucks around, he turns them over and spins their wheels.
5. He doesn’t wave or point or really shake his head.
6. He doesn’t bring me things or communicate that he wants something.
7. He throws tantrums sometimes for unknown reasons.
8. He says no real words and doesn’t seem to babble nearly as much.
9. He really has no stranger anxiety.
On the other hand though, he loves kids.
Now I know I may be just a worry wart mother. Please tell me if you think I am. But these issues concern me a lot. I got on the internet tonight and was looking at autism signs and there seemed to be a lot of similarities. I know Will is pretty young and most of these quirks he has could even out too. And I know that you can pretty much diagnose yourself with ANYTHING by looking at the internet.
I just ask for your honest opinion since you’ve observed him. Do you think I should get him evaluated? I’d really appreciate your input.
Deidre
She wrote back after she had talked to her supervisor to say that she wasn’t an expert on the situation, but her supervisor had suggested that we meet with our pediatrician to discuss our concerns.
We met with Will’s doctor, Dr. Holly Bondurant, a couple weeks later. Will was 15 months old at the time (we chose not to give him the MMR vaccine). She looked through Will’s file and it didn’t show any red flags from the past visits (I had fairly severe post partum depression issues for a while after Will’s birth, and every time we’d have a doctor’s visit, I would clam up and not share my concerns out of fear of having an emotional breakdown).
Dr. Holly sent us to have a hearing screening done and also referred us to Dr. Tracy Stroud at the Pediatric Adolescent Specialty Clinic at University Hospital in Columbia, MO. Will passed the hearing screening with flying colors. When seeing Dr. Stroud we were not to be so lucky.
Dr. Stroud and her team asked us a lot of questions and observed Will when he was 15 months old. After talking to us, she said that she did not want to diagnose him with anything since he was so young, but that if she had to guess, she would say he had PDD-NOS. She referred us to First Steps, and told us he should get occupational and speech therapy and that he should make great progress. You always think you’re going to feel better if you just have answers, but we didn’t feel better after that visit.
We called First Steps and set up evaluation time for the OT and Speech. He needed to be at a level half his age or less to qualify, and he did. We were now officially in therapy.
Our occupational therapist turned out to be Leesa Zimmerman. We loved her from the start and met with her once a week. She really helped us try and understand autism and sensory disorders and Will was always happy to see her. She really listened to our concerns and had a lot of suggestions for us. One of those suggestions was to call Judevine. She told us about the parent training and other programs and encouraged us to try it. (Sadly, she has recently taken a new job and we are searching for her replacement).
I called Judevine and discovered that we had to be qualified through Boone County Regional Social Services. Someone from their agency came for a visit and observed Will and asked me a lot of questions. She told me that Will would qualify for their programs and for Judevine. I wasn’t sure if I should be excited or upset. About a week later I received a letter from BCRSS stating that Will had been determine to be disabled and had qualified. I was horrified. Disabled??? I had never thought about him that way, and I still don’t.
Actually, up until the last couple of weeks, my husband and I have been in denial about the whole thing. Maybe I’m still in denial. Yes, we’ve been seeking help for Will, but I think in our minds he is going to snap out of this thing at any time. We still haven’t told a lot of our friends or family, but it’s definitely sinking in that Will is always going to have issues to deal with.
Now as far as our families go, my parents had been saying things like, “Oh Deidre, Will’s fine. He’s just not like other kids, but he’s fine.” “Will doesn’t have autism, he’s just different. Quit worrying.” “Will’s just a late talker. I know of lots of kids that didn’t talk till they were three or four.” Having someone you trust say those sort of things to you makes you feel better for a short period of time, but when they’re not there to see what you’re really talking about, and then the next strange tantrum or weird obsession occurs, you have your doubts again.
During the last month we have visited both my parents and Tim’s parents (both sets live in different cities and are 4-5 hours away from us). Will had a few “episodes” during those visits that I believe has made his grandparents may be more open minded to our concerns.
At 18 month old, we took Will to see a Columbia, MO allergist named Dr. Laurie Fowler (a suggestion of our PAT trainer, Jennifer and our OT, Leesa). Originally we took him because he had this mysterious, itchy rash since he was about 6 months old. She asked us a lot of questions about his food habits and behaviors. As we answered, she just nodded her head in understanding. We described Will’s very limited diet of milk, crackers, macaroni, yogurt and grilled cheese. She told us that she wanted to see how Will would do if we took away wheat and dairy from his diet.
Now I had previously researched the gluten and casein free diet on the Internet. It was praised to have helped lots of kids with autism diminish some of their negative behaviors. It wasn’t until Dr. Fowler encouraged us to try it that we took the plunge. We started the next day and it was VERY difficult at first. I discovered that almost everything he loved has gluten and casein! We reverted back to baby food until I was able to get a better handle on it.
We felt like we’ve had great results from it. About 6 weeks after starting the new diet, Will suddenly knew all his letters, numbers, and colors! He started pointing to things in books! He was responding to us and including us in his play. He didn’t melt into a tantrum nearly as easy and responds much better to directions.
This whole situation has caused me to become much more patient and understanding person with my son, and much more impatient and less understanding with my husband. I’m working on that. It has been stressful on our relationship, but we’re working as a team to try and do the best we can for him. I’m very thankful to have a husband that wants to be involved and has patience with me.
It breaks my heart sometimes to see other kids Will’s age and what they’re doing and saying, and even eating. We’ve never really gotten to enjoy being parent’s the way that they have and I have twinges of jealousy here and there. But I know that there are much worse diagnoses out there for children, so I have to be grateful that he doesn’t have some fatal or more disabling disease.
A lot of times I think that Will would’ve turned out differently if I would’ve had a c-section sooner during labor, or maybe if I wouldn’t have let him watch Baby Einstein videos (there's a study that was done saying TV may cause autism), or maybe if I wouldn’t have allowed him to get vaccines … and the “maybe ifs” go on and on and on.
At this time Will just turned 2 years old and he only says Dada and Mama (it sounds like Baba) upon request. He only babbles and sing song hums other things. I have yet to get a kiss from him, and I dream of the day his gives me one and says, “I love you Mama.”
I have stayed home and taken care of Will since he was born, so I’ve been able to really observe his behaviors. He was an extremely fussy and hard to soothe baby. Not colicky, just irritable all the time and he didn’t sleep well. He was also very constipated.
We called his doctor’s office about the constipation. They said to add a teaspoon of Karo syrup to his bottles. We did and it helped a little. For about 6 months he had Karo syrup in his bottles and he became extremely chunky. His bottles were one of the few things he enjoyed, so I lived to feed him.
During the first 6 months, Will rarely smiled or showed an interest in looking at us. He only cooed and got happy when we would lay him in his crib and turn on his mobile. Will hit his milestones perfectly until about 7 months of age. At that point, he really didn’t like to sit up, and if he did, it would be in the “W” position (basically sitting on his feet, but with his feet coming out to the sides of his rear end).
I would take him on walks in his stroller with other moms and their babies of the same age. While their kids eagerly sat up in their strollers soaking up all the exciting things around them, Will always just laid there with an uninterested stare on his face. He started babbling for a couple months and then stopped around 10-11 months of age. He walked at 12 - 13 months.
It was at one of our Parents As Teachers sessions with our trainer Jennifer, that something finally just clicked in my brain. She was doing his 1 year checklist (I think Will was actually about 14 months old when this happened) and asked me a bunch of questions. Later, after thinking about my responses, I realized something just wasn’t right and I started researching on the Internet. I came across quite a few sites about autism and some of the signs rang true and some didn’t. But one site had a list of signs that said something about how your child might turn trucks and cars over and spin their wheels instead of pushing them around. I started bawling because I knew it was Will. Tim and I had a big discussion and I cried a lot. He was in shock, but didn’t want me to get too worked up before we knew anything for sure. So, I wrote this email to Jennifer:
Hi Jennifer,
Hope you don’t think I’m a nut, but I’ve been doing some thinking since our visit. Some of the questions you asked got my wheels turning. Since Will was a tiny little thing I’ve always wondered about his behavior and thought he was a little different than other babies his age.
Here’s a list of what I mean:
1. He doesn’t seem to show affection to us. He’s never snuggled and has laid his head on our shoulders approximately 5 minutes total since he was able to lift his own head.
2. He really didn’t smile hardly ever until he was past 6 months old.
3. He doesn’t react to his name consistently. I have to call his name several times and even then sometimes never get a response. Occasionally he looks right away. If I’m holding him, 95% of the time I cannot get him to look at me even though I say his name over and over and over.
4. He spins balls a lot and doesn’t push cars or trucks around, he turns them over and spins their wheels.
5. He doesn’t wave or point or really shake his head.
6. He doesn’t bring me things or communicate that he wants something.
7. He throws tantrums sometimes for unknown reasons.
8. He says no real words and doesn’t seem to babble nearly as much.
9. He really has no stranger anxiety.
On the other hand though, he loves kids.
Now I know I may be just a worry wart mother. Please tell me if you think I am. But these issues concern me a lot. I got on the internet tonight and was looking at autism signs and there seemed to be a lot of similarities. I know Will is pretty young and most of these quirks he has could even out too. And I know that you can pretty much diagnose yourself with ANYTHING by looking at the internet.
I just ask for your honest opinion since you’ve observed him. Do you think I should get him evaluated? I’d really appreciate your input.
Deidre
She wrote back after she had talked to her supervisor to say that she wasn’t an expert on the situation, but her supervisor had suggested that we meet with our pediatrician to discuss our concerns.
We met with Will’s doctor, Dr. Holly Bondurant, a couple weeks later. Will was 15 months old at the time (we chose not to give him the MMR vaccine). She looked through Will’s file and it didn’t show any red flags from the past visits (I had fairly severe post partum depression issues for a while after Will’s birth, and every time we’d have a doctor’s visit, I would clam up and not share my concerns out of fear of having an emotional breakdown).
Dr. Holly sent us to have a hearing screening done and also referred us to Dr. Tracy Stroud at the Pediatric Adolescent Specialty Clinic at University Hospital in Columbia, MO. Will passed the hearing screening with flying colors. When seeing Dr. Stroud we were not to be so lucky.
Dr. Stroud and her team asked us a lot of questions and observed Will when he was 15 months old. After talking to us, she said that she did not want to diagnose him with anything since he was so young, but that if she had to guess, she would say he had PDD-NOS. She referred us to First Steps, and told us he should get occupational and speech therapy and that he should make great progress. You always think you’re going to feel better if you just have answers, but we didn’t feel better after that visit.
We called First Steps and set up evaluation time for the OT and Speech. He needed to be at a level half his age or less to qualify, and he did. We were now officially in therapy.
Our occupational therapist turned out to be Leesa Zimmerman. We loved her from the start and met with her once a week. She really helped us try and understand autism and sensory disorders and Will was always happy to see her. She really listened to our concerns and had a lot of suggestions for us. One of those suggestions was to call Judevine. She told us about the parent training and other programs and encouraged us to try it. (Sadly, she has recently taken a new job and we are searching for her replacement).
I called Judevine and discovered that we had to be qualified through Boone County Regional Social Services. Someone from their agency came for a visit and observed Will and asked me a lot of questions. She told me that Will would qualify for their programs and for Judevine. I wasn’t sure if I should be excited or upset. About a week later I received a letter from BCRSS stating that Will had been determine to be disabled and had qualified. I was horrified. Disabled??? I had never thought about him that way, and I still don’t.
Actually, up until the last couple of weeks, my husband and I have been in denial about the whole thing. Maybe I’m still in denial. Yes, we’ve been seeking help for Will, but I think in our minds he is going to snap out of this thing at any time. We still haven’t told a lot of our friends or family, but it’s definitely sinking in that Will is always going to have issues to deal with.
Now as far as our families go, my parents had been saying things like, “Oh Deidre, Will’s fine. He’s just not like other kids, but he’s fine.” “Will doesn’t have autism, he’s just different. Quit worrying.” “Will’s just a late talker. I know of lots of kids that didn’t talk till they were three or four.” Having someone you trust say those sort of things to you makes you feel better for a short period of time, but when they’re not there to see what you’re really talking about, and then the next strange tantrum or weird obsession occurs, you have your doubts again.
During the last month we have visited both my parents and Tim’s parents (both sets live in different cities and are 4-5 hours away from us). Will had a few “episodes” during those visits that I believe has made his grandparents may be more open minded to our concerns.
At 18 month old, we took Will to see a Columbia, MO allergist named Dr. Laurie Fowler (a suggestion of our PAT trainer, Jennifer and our OT, Leesa). Originally we took him because he had this mysterious, itchy rash since he was about 6 months old. She asked us a lot of questions about his food habits and behaviors. As we answered, she just nodded her head in understanding. We described Will’s very limited diet of milk, crackers, macaroni, yogurt and grilled cheese. She told us that she wanted to see how Will would do if we took away wheat and dairy from his diet.
Now I had previously researched the gluten and casein free diet on the Internet. It was praised to have helped lots of kids with autism diminish some of their negative behaviors. It wasn’t until Dr. Fowler encouraged us to try it that we took the plunge. We started the next day and it was VERY difficult at first. I discovered that almost everything he loved has gluten and casein! We reverted back to baby food until I was able to get a better handle on it.
We felt like we’ve had great results from it. About 6 weeks after starting the new diet, Will suddenly knew all his letters, numbers, and colors! He started pointing to things in books! He was responding to us and including us in his play. He didn’t melt into a tantrum nearly as easy and responds much better to directions.
This whole situation has caused me to become much more patient and understanding person with my son, and much more impatient and less understanding with my husband. I’m working on that. It has been stressful on our relationship, but we’re working as a team to try and do the best we can for him. I’m very thankful to have a husband that wants to be involved and has patience with me.
It breaks my heart sometimes to see other kids Will’s age and what they’re doing and saying, and even eating. We’ve never really gotten to enjoy being parent’s the way that they have and I have twinges of jealousy here and there. But I know that there are much worse diagnoses out there for children, so I have to be grateful that he doesn’t have some fatal or more disabling disease.
A lot of times I think that Will would’ve turned out differently if I would’ve had a c-section sooner during labor, or maybe if I wouldn’t have let him watch Baby Einstein videos (there's a study that was done saying TV may cause autism), or maybe if I wouldn’t have allowed him to get vaccines … and the “maybe ifs” go on and on and on.
At this time Will just turned 2 years old and he only says Dada and Mama (it sounds like Baba) upon request. He only babbles and sing song hums other things. I have yet to get a kiss from him, and I dream of the day his gives me one and says, “I love you Mama.”
December 14th, 2008
Will was sliding down the stairs next to Tim and said, "Ouch, that hurt." (Which he never says) Tim said, "Well Will, if something hurts then you shouldn't do it." Will looks at him thoughtfully and says, "Hmmm. That makes sense! Will makes sense!" (He's never said that either and we don't say it a lot, so it was pretty funny to hear him.
Subscribe to:
Comments (Atom)