Friday, July 29, 2005

What's left for me?

This is me about two years ago. (Nevermind the hair, the wind is blowing and the haircut was an impulsive decision made at a vulnerable time.) I was so excited about my new bike! Not just that it was new, but because I had not owned a bike in years and (my in-laws didn't know this) it was the first NEW bike I had ever owned. I had SD (Super Daddy) video tape me as I pedaled up and down his parents' street. It probably looked silly, it didn't help that I was screaming and waiving like I was crowned Miss America. But, at the end of the day I ask myself sometimes "What is left for me?"

Here's an example, I have gone to "the doctor's" (therapist,specialist,
pediatrician,etc.) 4 times this week. On average it is at least 2 times a week. On average I spend at least 2 hrs for each of those appointments on the road not including appointment time. I love my children, I am, in fact, the one that makes all these appointments. But, after they are tucked in bed and I know I did everything in my power that day to ensure that they are safe, loved and taken care of, I find myself lost. I'm lost, because all my friends are talking about trips they go on, places they've been that day and the people they hung out with and I...well, I have been in waiting rooms...well...waiting. There are days when I want to say "I don't want to do this anymore." I want a normal life too. But, I look at the clock and I see my son's time slipping away. The "critical time for intervention" and I pick myself up, pack up the car and drive to another appointment. I can't even remember the "Before Autism Days". I know that they must be written down somewhere in my appointment filled agenda. Did I make appointments before for days to be "normal"? It feels so second nature to me now to schedule my days around doctor's schedules.
Speaking of which, SD took Gabe into to see our Pediatrician today about his diarrhea. We will now be taking "specimens" (4 different/seperate ones!!!)The tests will indicate whether or not he has parasites or bacteria in his lower intestine. This our REGULAR pediatrician helping us. I must say that he has been more helpful than the "specialists". Atleast more trustworthy and open to different ideas. He's honest with us about what he may think is not medically valid, but will support us nonetheless. He also suggested that Gabe may be allergic/sensitive to milk. We're going to wait until after the testing to take out milk from his diet. Crossing my fingers and toes.
Anyway, what a bummer of a blog. I want to end this entry on a positive note. This is a picture that was taken yesterday when we went to the zoo and rode the train. Right as the train was taking off, Gabe shouted "GO!" Not said, but shouted. This would not have happened, I believe, if we had not spent so much time waiting in those damn waiting rooms.

Wednesday, July 27, 2005

Eating with Gabe 101

This is Gabe eating this morning. Can you see Polly Pocket about to slide down the slide? He's really into imaginative play with these "Barbies".

This whole eating thing with Gabe has really thrown me for a loop. If I did'nt know better, I would think he was'nt related. We are a family of very specific likes and dislikes for food, but we love it none the less. My husband is a meat and potatoes guy, I'm a lactovovegetarian (16yrs.) and my daughter loves vegetables. Where does that leave Gabe? I have no clue. He will eat almost any candy no questions asked. (He eats candy very rarely, mostly as an experiment that he can eat other things than his extremely abbreviated list.) Table food sends him into sreaming rants and rages. He is petrified of it. But, hand him a french fry from McDonalds and he is all over it. Absolutley NO chicken nuggets, although they are fun to throw in the car. We have tried everything from giving him only a certain amount of water and milk a day with only table food and I swear he could've continued his strike for days. That was one doctor's advice. This doctor (a "specialist" with Autism) suggested that eventually he will be hungry enough. Gabe did not eat ANYTHING for 3 days. We were in tears by the end. Needless to say we stopped that. He's in OT with a great therapist, but it seems to be more on HOW to even get him to eat anything outside of cereal and crackers. We've tried flashy toys, noisey toys, movies all types of distractions. We feed him, he feeds himself, in fact we encourage it in order to empower him to no avail. This is a list of the ONLY foods Gabe finds acceptable: Bran cereal, Kashi whole wheat waffles, pretzels, any type of cracker (we do only whole wheat or Kashi) plain popcorn, sugar free pudding, chocolate chip cookies/any cookie(special treat), animal crackers,Gerber sweet potato puffs and vegetable wheels and baby food mostly #2(Only apples/chicken, oatmeal or rice cereal mixed with applesauce, #3 applesauce, turkey vegetable dinner #2....there are a few more, but not many. There are days when he will only eat the cereal baby food). He does not have any muscle motor control problem with eating, except it may be more tiring, because the food he does eat does not take a lot of effort. Through OT we use a NUK for sensory therapy in his mouth at home. Gabe likes it now, but it has'nt changed his eating habits.
I guess he has always been this way. When he was 8 months old he went on his first "strike" from baby food, but we thought he just did'nt like the kind of baby food we chose. He also was not into breast feeding. He preferred the bottle. That threw me for a loop, because I breast fed my daughter for almost a year and she loved it. But then, Gabe was never a snuggler.

As you know, Gabe also has GERD (constant reflux). He is on Previcid to protect his esophagus. We've exhausted the resources and tests through our gastrointestinal doctor. ALL tests came back normal. So, we are on the allergy testing avenue now. I've wanted to try the Casin/Gluten free diet, but, as you can see, that is all that he will eat. Based on the theory for that diet and if he would benefit from it, no wonder he likes eating those things. I have to wait 2 more weeks until he gets the allergy testing done. Kind've tired of all the waiting. He's seeing someone that is known in his field for specializing in food allergies, so what do you do?
Does anyone else out there have a child with similar eating issues? I was once told not to worry about your child not giving up the bottle, because have you ever seen a college student drinking from a baby bottle? But, you know, I can imagine Gabe whipping out those Gerber Sweet Potato puffs before calculus and smiling.
Take it easy.

Monday, July 25, 2005

Boy, Can he Kick!

Oh, I sooo needed a picture like this on my blog to end this day. It was'nt a stressful day, but just REALLY boring. It is hot and humid here. Not as bad as when we were in Las Vegas a week ago (120 dry degrees on the Strip), but it does'nt make going outside all that appealing. It's hard to justify styling my hair in humidity like this. I end up looking like I slept in a tent the minute I open the garage door. My hair was made for dry fall weather, which I think happens for one week in October here. I'll post a picture when it happens. I almost do not recognize myself.
I ended up not taking Gabe to the doctors today, because quite frankly I am sick of going to the doctors. His poop firmed up today and he still did not have a temp or seem sluggish. I know our peditrician would call it a virus and send us home. I still think it is allergies, GERD and maybe a virus. The neighbor kids had temps this past weekend. Maybe caught from them? We are keeping a watchful eye out for changes. (I need to get out more!)
Gabe has also stopped accepting his favorite baby food, Heinz's Apples and Chicken. I think it is a combination or his will for Power and his GERD. He is always getting reflux in his mouth throughout the day. That I think would turn anyone off of eating. What's funny in a strange way is that he will still eat bran cereal, whole wheat crackers and pretzels???? We keep a food journal and it is the same everyday, except for the few weeks here and there where he stops accepting baby food even if we have him feed himself. So, he will go days eating cereal, watered down juice and milk. We have tried everything. AND he is also physically fine in his digestion. ??????? I'm clueless on what to do next.
So, Gabe's diaper rash cleared up today, but boy can he kick! He is a little over 3 feet tall and 36 pounds at 2 years old and he is strong. His favorite thing now is to kick at me when it is time to change him. I've tried numerous wrestling moves, but he still manages to scoot away from me on his butt. I have to pretend to eat his feet in order to quickly wrap a diaper around him. Thank god he is showing interest in his little potty. I better start lifting weights.
My husband and I, I'll call him SD for "Super Daddy" 'cause he's great, are watching the first season of Survivor on OLN every night through the week. We look forward to watching it and we are guaranteed to spend one hour an evening together doing something we both like. SD and I are two very different people in what we like doing for entertainment, so this just brings us back together. The first Survivor looks a bit cheesey and becomes a little redundant in explaining all the rituals each episode, but Richard Hatch cracks me up. I can't wait to see the second season. I believe SD and I started watching the third season consistantly when it first aired. I can't wait until the new fall shows start.
I want to write a quick note about Gabe before I go, because his growth happens so slowly sometimes, that I miss the amazing subtleties. We have a doll house that I set up in their playroom on a table that has about six play people and furniture for each room. This is a great toy to model social interaction and use for floortime or any interactive play. Anyway, I came in from the other room and noticed that he has placed all six people in bed together and has a fisher price people giving each person a kiss before they go to bed. What's really cool is he was giving each kiss a sound with a "smack" of his lips. I came up and offered him a little blanket that goes on the bed and said "Oh Gabe. I think they may be cold." He took the blanket, put it on them and smiled. He smiled not at me at first, but at the people. I rubbed his belly and said "You are such a good daddy!" He beemed :O)
Oh! UPDATE......Gabe's nuetraphils came back normal. He had a CBC about 3 weeks back and they came back low. So, we had another CBC done last week and now they are normal. His heavy metal screening came back good. All levels came back a little lower than normal, including Mercury. Does that mean we are talking strickly genetics now? And what does that mean? Sometimes the answers I seek cause only more questions and fear.

Sunday, July 24, 2005

More talk about the big "P'

My first time holding Gabe in the hospital. (Day 2) I so badly wanted to take him home :o)

Brought to you by......
Off to the doctors tomorrow. Gabe has had diarrhea for a few days now. He's healthy otherwise and doesn't seemed bothered. He does have a red bum, which we are medicating, moisturizing and trying to air out during the day. He has such a cute bum. What's weird is that we can not figure out what is causing it. Gabe has a very limited diet and this seemed to just appear. We still have 2 weeks left of waiting to see a specialist in food allergies. I can not wait any longer! His constant GERD (he's on Previcid) and discomfort with food makes me wonder if everytime he eats he is having an allergic reaction. He is not showing any of the "typical" signs for a reaction though. I may be a bit over the top on this, but we found out a year and a half ago that my daughter is anaphylactic to peanuts and shellfish. She grabbed and ate a Buckeye candy (Kind've like a Resses Peanut Butter Cup shaped like a Buckeye nut) started to look really sick, by the time we got to the ER her fingertips were blue. My husband and I just look at each other sometimes and think what beautiful,smart,loving children we have with the worst mix of genes from each side. The two of us must have just been lucky that we missed some of those genes.
Does anyone know anything about Leaky Gut or bacteria in the gut? I've read a few things about this and I am still wondering if more is going on in his little body than we know. He had an Upper and Lower GI done and he is healthy. Every test comes back normal. I wonder sometimes if we are just looking in the wrong place and are missing it all together. I just wish he could tell me. I just wish someone in the medical field knew what they were talking about. I know that most, especially our peditrician, are trying so hard to be supportive anyway they can, but I feel like I am on my own. It is an undaunting pressure. Maybe that explains the increase in Cold Stone Creamery consumption lately. I think all will look better when they bring back the Cake Batter Flavor.

Friday, July 22, 2005

Can anyone help me with my side bar information?

I am having the hardest time trying to figure out how to keep my information from looking like it is falling off my blog. I see that everyone elses' information stays nicely on the side of each post, but mine keeps getting further and further away.LOL!

5 Days Later

18 months old as Mr. Buzz

Gabe went in for surgery Monday to have tubes put in both ears. We never could tell if he had an ear infection unless he vomited or we just happened to be at the doctors and he noticed. Gabe was just so easy going as a baby. We wondered when asked his history of ear infections how many could have gone over looked? My husband and I guessed 4 or 5 documented in the last two years. Our concern was not that he had ear infections, but every time we went to the doctors he always had "some " fluid in his right ear. I decided to see a specialist. I always try to approach his medical needs without mentioning that he has Autism. Sometimes I get the feeling that some doctors want to write off most symptoms as a side affect of Autism. Here's one classic example from an ENT,
"He only has a little fluid in his right ear. I also notice he is not looking at me when I talk to him, is there anything else you want to tell me?" (No eye contact screams Autism to most doctors I've met)
On the INSIDE I was saying....."Are you kidding me?He's not looking at you, probably because he can't HEAR you."
On the OUTSIDE and more diplomatic side, I said "I just think it would be in my son's best interest if he had a solid foundation to work from when it comes to his development in speech. Don't you agree?"
Luckily, she did. But as a mother, I felt almost as if there was a biased against giving a child with Autism proper medical care if a symptom falls under the Autism umbrella of diagnosis. My son can't possibly have a hearing problem, because ALL children with Autism have poor eye contact and do not listen. What an absurd correlation!
Whew..Deep breath.......on a brighter note, Gabe has added in 5 days many more sounds and words to his vocabulary. Here they are in all their glory..!
POP!........ (What a waffle does when it is ready from the toaster)
Go! .............(Said with great enthusiasm as he runs around the house with his sister)
Daddy......... (75% of the time in reference to my husband)
MOM.......... (as he sat next to me. He still does not have a word for me)
"CKk"......... (first sound in the word cookie. VERY important sound to my son :o)
"CKR"......... (cracker)
"No".......... (I never thought I would be so excited to hear this word)
Bubbles...... (He is now actually ending his words..Before it would be Bubba)
Car.............. (He said this in March and then it never was said again until now and he plays with cars all the time)
"EEEE!"..... ( We say.."Who wants it?" he pats his chest and says EEEEEE! (Me!) First real interactive word with someone. )
"Book"....... (He used to say "Ba", but now there is a clear "oo" sound!)
"Ball"......... ( with an "Ll" !)
He had about five words before "Tica tica" (tickle tickle), "dada", "mama" (Not in reference to us, but said when mad or upset), "ca" (car), "Ba" ( ball or book). That's it and some signs. Look where he has gone in the last 5 days!!!!!!!! I'm crossing my fingers....and my toes :o)

Wednesday, July 20, 2005

Welcome to Holland

Welcome To Holland
By Emily Perl KIngsley
I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you are going to have a baby, it's like planning a fabulous vacation trip- to Italy.
You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says
"Welcome to Holland."
"Holland?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I have dreamed of going to Italy."
But, there has been a change in flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy. But, after you've been there for awhile and catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say
"Yes, that's where I supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, go away...because the loss of that dream is a very, very significant loss.
But..if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
My Son, Gabe
My son was diagnosed with Autism PDD- NOS in March of this year. I would like to say the "experts" were first to break the news, but I knew before they did. I just asked them to validate or confirm what I new was true. It scares me to think what would of happened if I had continued on believing what everyone was telling me. Some of you may relate.
"He's a boy. They all take awhile to speak."
"Your husband is a picky eater too, isn't he?"
"He's independent. That's why he doesn't play with the other kids."
"Does he have a hearing problem?"
"He must be tired. That's why he doesn't say hello."
We are still searching for the reason. We think it may help us better choose the appropriate path for therapy and intervention. I'm not sure if it was mercury, I had two RHogam shots with him (I'm negative and my husband has positive blood) and he had ALL of his shots before we knew. He was screened for heavy metals today. I'm anxious to find out the results. Genetically, as I look back now, my brother seemed a little different, not Aspergers, but perhaps on the spectrum. He was incredibly smart, but could never understand why people acted the way they did. He had a very difficult time fitting in. The chromosome test came back "normal" and so did the Fragile X. He did have low Neutrophils. He was also retested for that and we are waiting for those results too.
I eventually told my husband after a week of knowing Gabe had Autism. I didn't think I could hide anymore the late nights of reading on the laptop about Autism and crying by my son's beside as he slept. He had a hard time accepting that it just wasn't a developmental delay. He was so hurt. I will never forget the look in his eyes.
My son was born 7 weeks early, 6lbs. 9ozs, healthy, but had a hard time stabilizing his breathing. He was out of the NICU after two weeks and has not had any problems. We're still not sure about why he had come so early. I was healthy, read every book, ate healthy, got the "Doing great!" from my doctor. All I could think then was "Where did I go wrong?" We took him home and I was by his side for days listening to his breathing. I stopped crying the last day we took him home from the NICU. I thought we were almost out of the woods. Only one year to watch for developmental delays we were told. Gabe was diagnosed two months before his second birthday.
There are still people in our family that do not believe that he is Autistic. With all the testing and doctors appointments, I believe some of them think I am hypochondriac. But, when Gabe was chasing around a 7 year old today at Borders, grunting out of excitement (He has limited speech and some sign language) and I saw the look on that boys face of "Help!". Those are times when it's glaring in our face. But, I can't help but smile at how happy he was.
Gabe currently is 2 years old. He is in speech therapy once a week (We do a lot of reinforcement at home during the week), he was evaluated for PT, but found he is developmentally on target, Once a week for OT (Eating is Gabe's power struggle with us. It is a bit sensory, a sprinkle of stubborn, constant GERD and a hint of my husband) He will be attending a school this fall that focuses on ABA. I will attend with him in order to implement at home. We are looking into Floortime for the winter. Right now we use some of the guidelines and principles of Floortime with Gabe when we play with him. We did the Early On Program through our school district in the Spring, but eventhough the teachers were very nice, they had no clue or no resources to offer the services needed for a child that has Autism. (He was given 15 minutes a week for speech through that program.)I'm not sure if I will ever send him back. I have him signed up for dance class through our community (He is not happy with his tap shoes!What was I thinking. He does "tap" in his socks with all girls)and will have him enrolled in Gymboree this fall. I'm exhausted. Is anyone else out there tired too? The window is so small for the greatest impact, I am more than overwhelmed. But, I can not imagine doing everything in my power for my children.