Wiping the sweat from my brow

I wanted to post a picture for this, but just could'nt think of one that could portray the angst I dealt with today. Yesterday was Boo's first day at preschool/daycare. I had to enroll her in a different program, starting this year, due to Gabe going to a program for ABA (5 days a week, 3 hours a day, 12 weeks)and my training to continue it after it has finished. All her friends, and mine, remain in the previous preschool. What's funny, is that I am having a harder time with the transition than she is. I do not know the kids or any of parents. I wonder what she is "learning" and how she is truly managing. She does'nt seem to be playing with anyone when I pick her up. If she is by some kids, that's just it, she's just sitting BY them. Boo is very outgoing and extremely likeable. My heart sinks and my throat begins to hurt. I am trying so hard not to cry. I stayed at home and gave up my career to be with BOTH of my kids and now here is one in a preschool/daycare. I think daycare can lend ityself to being very benificial in the development of a child, but I really miss being part of her preschool years. My husband will be going on all of her field trips with her until December. Those are my favorite times, the apple orchard, Fire station, all those cool experiences.

To top things off, Gabe has really made the dropping off and picking up of Boo almost unbearable. It is so difficult, because of four major factors. #1-We have to walk past the playground to get to her room. #2 Her room has a door that goes directly to the playground #3 We pick Siena up when she is outside on recess #4 Gabe is REALLY ready for a nap when we pick her up. I can't change times due to his nap and when we would be returning from his program. If I did, she would have to be picked up after his nap, which adds an additional 3 hours onto Siena's time in daycare/preschool,more $$$ and less time with Boo.

So, this is what we tried today (We have 5 days until we start the ABA school). I let Gabe play a lot oustide on the swing set and he played for about 10 minutes at the playground when we picked her up. Most of the four year olds are great with letting Gabe play along, but he is two and a bit clueless when it comes to play etiquette, so the welcomed invitation quickly expires. That's when I give the last bit of countdown and try to herd him inside. I end up throwing him over my shoulder kicking and screaming, while my daughter is complaining about how tired and thirsty she is. She is also filthy and has rocks stored any place in her clothes that she can manage. (Those are always fun to pick up around the house.) Boo has spent the last two days playing in the dirt on recess. I should not have gotten those cute outfits at Gymboree. If I knew it would've been jeans and vacation tees!
So, I get him inside and he starts walking on all of the sleeping cots that the kids are about to sleep on. Boo can not seem to muster the strength to get her backpack (on wheels!!!) and I feel like ending it all in the play kitchen area with a plastic knife.

I grab Gabe, screaming again, and hand the rolling backpack to my weary daughter and practically run to the car. Gabe is stretching out his arms against my chest and kicking my pants down my waist. (He weighs a solid 36 lbs.) (God help me...God help me...) Now, if that all sounds rough......This is the kicker. Gabe no longer wants to peacefully get in his car seat and he has the power to stop me. I did get "The Look" from a passing parent today. "No I am not hurting my child...Thanks for your concern," look back from me. I can not get him to fold in the middle! He will not put his butt down! It is as if he has become some piece of treated lumber from Home Depot! How am I going to get home??? Bend Gabe bend! Sweet Jesus!!! BEND!!!!!!!!!!!!That's when I took a deep breath and started to laugh. I thought if this is what I am going to have to deal with, I will have to really find that hidden strength in me. I know deep down that this maybe just a glimpse of what is soon to come. We all know that our children on the spectrum change and grow just like other children, but ours have many more obstacles to overcome in areas of behavior and understanding themselves and the world around them.

It took an obscene amount of strenth and determination to get him buckled in that car seat. The shrill screaming that prompted Boo to say over and over, "It hurts my ears!", the smacks at my hands and kicks to my arm, we left that parking lot. Gabe finally succumbed to defeat and the shrill screaming stopped about a block away. What am I going to do tomorrow????

Fashion Victim

I can't seem to get enough of pictures. Thank God for digital cameras!!! Here my son is being the victim, yet again, of a mother and daughter fashion attack one rainy day. Isn't he cute? He is wearing a Pill Box hat I used to wear in my teens when I went through my Gothic/Retro period. I think he was almost one here. I looked everywhere for the picture of Gabe wearing a very flowery and full tutu. I could've just squeezed him he was so cute. I asked SD where the pic went and he swears that he doesn't know. Sounds suspicious to me.This is what happens when you are surrounded by two girls that have a bunch of cool clothes, but don't want to dress up themselves.

Anyway, I wanted to talk about how great Gabe is coming along in his speech. He is adding words like crazy and seems to be mimicking/repeating two word phrases that we say. Now, I know that can be good and bad, but when your son hasn't ever talked, we'll take what we can get. He uses these phrases without prompting too and in appropriate situations. Don't I sound like I've read just about enough on language development. (lol) Those phrases are "All Done", "Good Job", and "More Eat". These phrases sound more like "AAAAA..Done", "Goooo...Job" and "MO..EEEE". He also is adding beginning sounds to some new words and is learning quickly sounds that animals make. We went to a dairy farm today with some friends and he kept saying moo to all the cows. He even fed one!

Well, my husband and I are about to watch another episode of season two of Survivor. So, I wanted to leave you with these pictures. If you have read my blog post "Gabe's Quest For The Four Seasons," This is yet another spot in his room that he finds very comfortable.

I'm Going Cross-Eyed

The results are in! We are relieved and overwhelmed at the results, but nonetheless, we now know. The allergist did a pretty comprehensive allergy screening. I must say that I was extremely impressed with the elaborate questionnaire we filled out before we met with the doctor. They also performed the test very quickly. Gabe was such a trooper. We thought ahead and brought the DVD player so he could watch Toy story 1 and 2. That really helped. His whole back was marked with pen and red marks everywhere. They did a few under the skin to confirm some of the more borderline results.

Gabe is allergic to wheat, soy, egg, sweet potatoes, tomatoes, garlic (scored a 4),peanuts , chicken, cats, dogs, potatoes, and some type of mold. He was not allergic to milk, but we think he may be lactose intolerant. At home we found so much in our cupboard had to go. Even quite a few baby food jars will have to be donated. My daughter cried when we threw out the Golden Grahams cereal.Gabe saw them when she was eating them and was not happy when he could not have any. We initially bought them to use as reinforcers when Gabe ate.

Today, I went to a store in town that has a gluten/casein/wheat free section and found some things. I found that some of the foods would work great, then read on and they would be processed on the same equipment with peanuts, or trace amounts of peanuts or egg, soy or milk. So, I'm trying to keep tabs on what is acceptable and what is not and whether it has peanuts or trace amounts or a peanut skipped threw it or would Gabe actually eat it and OH MY GOD! OH MY GOD! OH MY GOD!(Mind you)I had to take my daughter to the bathroom 3 times during all this. I did go cross-eyed at one point. Maybe it happened right before I felt my daughter tapping on my forehead, while I was muttering "No wheat, no wheat", yelling "I HAVE TO GO POO POO!"

This really is not all that new to me (I've been a lacto-ovo-vegetarian for 16 years). However, I'm reading labels now for three separate people with various dietary needs. After awhile I was just reading and would look back at what I read with no clue if he could eat it or not. My head was spinning. My daughter kept asking "Can I get my special school treats?" "Now?" "Now?""Now?"

I made a deal with her that if she was a good helper, she could pick one kind of special lunch box treat for school. She got to pick from three prechosen, mother approved snacks. It made the whole experience go smoother.

My sleeping lately has been horrible. I think I get a few hours in each night, but toss and turn the remaining. SD (Super Daddy) told me I had dark circles under my eyes and prescribed a nap today. I actually took him up on it, guilt free. I let the kitchen floor be dirty, toys stayed scattered all over the house and I even slept with all my makeup on. I just was too tired to care.

What's on my plate now? Here's what I got so far; starting an incredibly intensive ABA school with my son in two weeks, my daughter (we call her Boo) goes all week to school with all new kids in 4 days (Hoping the teacher takes us seriously on the "Peanut Free" with her), getting Gabe to eat using ABA, figuring out what to feed Gabe, another test for Gabe that will measure how fast his stomach empties (still has GERD), Preparing for the battle in October with my school district on what I believe is a "Good Education" for Gabe with statistics, PT,OT and Speech reports and 5 intensive reports from highly qualified doctors that label him as being Autistic ( The school district refused to change Developmentally Delayed to Autism last year even with 2 qualified reports from doctors) and my husband goes back to work for the new school year in 5 days. Maybe I'm being a bit Global in my thinking, but I am very overwhelmed. I know all will work itself out and I will make it through, but I feel really spent.

Untitled

WOW.

$$$$$$$$$$

I think I am at my wits end. I went to my ABA conference today (Day 1 of 2). Gabe will be attending a "therapy/school" for ABA starting in September. He will be going for 12 straight weeks, 5 days a week for 3 hours each day. I will be implementing at least one hour at home each day also. This program is centered around training the parents for using ABA at home. So I will be attending with Gabe. It has been very exciting and very stressful. If you had read the Newsweek about Autism or watch any of the NBC affiliates' reports on the Autism Epidemic, you would have seen or read about the families going in debt to pay for special therapies. Well, that would be us.

I sat in class trying to calculate the payments each month for three months, then the consultations that are required after finishing the program that happen up to 4 times a month at $150 a pop. That's you guessed it...$600 per month. My husband is a teacher and I was also for about 7 years. We are not, by any means, wealthy people. We decided to use the equity in our home to pay for this program and also to provide a good preschool/daycare program for my daughter through our school system. (I had to find somewhere for her to go while I was at school with Gabe) You know what really sucks( I can't think of a better word right now) is that this is our only chance. We will have used all our resources. Can't the insurance companies see how helpless we are in providing this type of care???? My husband actually has the best health insurance in our state for teachers. His school district is one of maybe three in the state that has not had their's taken away. How sick is that? An insurance for teachers that turns it's back on children???

I'm at a complete loss. What's funny is that this program raised their tuition $3,ooo after we signed up. Thank god we signed up before that, because we wouldn't be able to afford it. They try to emphasize that they want it to be affordable for everyone. Who's their everyone??? Birmingham? West Bloomfield? Grosse Pointe? (These are very elite areas in MI) I know some programs cost $30,000-$80,000, but these programs are doing a real disservice when ANY child with Autism is excluded. Programs don't run on IOUS either. Bummer, because I made a really pretty one out of construction paper today. I even used some glitter.

Catching A Glimpse

Lately I have been really preoccupied with Gabe and his speech, OK, also his eating too. OK, basically EVERYTHING about Gabe. I'm running around in circles. Is he better? Have I heard that word before? Is that my own tail I'm chasing? It's crazy. I feel crazy. I realized how crazy I was becoming when I asked my husband for the hundredth time in the last few weeks what Gabe's poop looked like this morning. Isn't the definition of insanity to keep doing the same thing over and over expecting different results?Is there a moment where you have to let go a little to just be sane? When can it just be morning without discussing the consistency of poop?Craziness.

In the midst of my craziness, my son jumps on my lap and zerberts my arm. Not once, but numerous times. He laughs and tries to initiate a tickle fight or playful wrestle. I laugh too and it hits me. I have been so caught up with his verbal development that I completely missed the fact that he really is close to his age in social development. He has moments where he has some poor eye contact, but he really reaches out to play and interact with people. What a HUGE milestone! Where have I been? Thank God I didn't miss it.

My thought for today is to remember to keep my eyes open enough to see the light through the trees.

Secret Thoughts

GABE

Sometimes I wonder what you are thinking. With each word we are getting closer, but I feel so far away. You say Daddy with such pride now. I smile at you and wonder will you ever say Mommy. Most of your words are the beginning sounds, but you say the word Bubbles with ease. What is keeping your words from me? There are long nights where I wonder if I will ever know what you are thinking. I miss knowing so much.

Dinner Theater for Gabe

#1) The first picture shows The "pirate people" climbing up the stairs. They climb up, then slide down where it repeats over and over.
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#2) Can you see the pretty barbie sprinkles on the yogurt in the bowl? He tasted it (put his tongue on it) and that was it. The other food on his plate are Wagon Wheels by Gerber. They are like puffed vegetable crackers. We always put one carrot on his plate, because that is something that he has "tried" to eat recently. That was banished from the accepted area early on in the eating process. Watching Gabe eat is like a mini show of survivor, but with food.

#3) Can you see my husband sneaking in a spoonful here? He managed to get in three jars that night. He also fed him foods that he hasn't eaten in almost 6 months. (#3 stage food with chunks!!!!!)
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We have started something new at dinner. All the other flashy toys have become passe to Gabe. It was time to invest again in a dinner time distraction. This absolutely cheap, but incredibly magnificent toy has metamorphized our son. The premise of the toy is so simple, yet mesmerizing to Gabe. It works perfectly! Gabe has, what I think, pretty severe texture and sensory issues with food. Although, I did catch him licking a lava rock the other day by the pool. (Maybe some pica???) Anyway, SD (Super Daddy) tried to sneak in the smallest piece of broccolli in his Heinz mixed cereal on his spoon ( He was on a winning streak with getting him to eat)Gabe's reaction was one of horror. He felt the broccolli in his mouth, opened to let it fall out and proceeded to scrape his tongue with his hand, while spitting to make sure it all got out. He looked at us with a look of "How could you!!!" Needless to say, dinner was over. He quickly did the sign for all done and pushed his chair away from the table. So......brocolli is a no.

We have stopped giving Gabe milk. His bowel movements are much better. I guess we are now on the Casin free diet, partly. One week until the Allergist evaluates and tests Gabe. We will know then what course of action to take further with his diet. I'm going to our local health food store tomorrow to look into a calcium supplement (Any ideas welcomed :O) I also called our doctor and left a message asking if he would help with doing Chelation with Gabe. I'm guessing this maybe where he may not be willing to cross the line of conservative medicine. I'm preparing myself for the phone calls I will have to make in order for this to happen. Anyone know of someone in Michigan???

Applause to the Bloggathoners!!!!

I know you are all probably sleeping, but here's a

GREAT JOB! out to those who did the Bloggathon for Autism. Thanks so much!

"They can take my floaty, but they can not take my freedom!

This is Gabe at 7 months old. He is definitely in his element here. Water is a beautiful thing to him. Pools, baths, running faucet water, BUT absolutely NOT showers! You could hear his screaming for miles after we had to rinse him off after swimming yesterday. Our friend has a huge luxurious bathroom, which echoed the shrill screams even louder. SD and I felt terrible. The only other option we had was to fill up their even larger jacuzzi tub. So, we thought quick in .....quick out. Gabe has pretty sensitive Excema behind his knees and on the crook of both his arms. If he does not get all the pool water off, he breaks out and it really itches. We do treat it with Elidel, but Excema all lies in prevention really. We got him all dressed and ready to go, said goodbye to our friends and I catch a whiff. I must say that I am notorious for pointing fingers when this happens, because I most certainly do NOT want someone to think that I can emit a smell most foul. By now I am very tired, my stomach is growling and now I have to deal with the big "P". To let you know HOW tired I was, let me pause a moment and rewind.......

The morning started bright and early, 6:30 AM, Saturday. Gabe loves to wake up and play by his door for about 10 minutes before he knocks continuously until you get him. All the morning stuff occurs and them off my daughter and I go to gymnastics. Afterwards, a quick bite to eat and in the car to our friends to swim in her cool pool. Mind you, it is about 2:00PM when we get there and Gabe has decided to not nap the entire hour that the trip took. At first, he seems OK with being held, with the occasional jump into the pool to a person waiting. But, by 3:00 PM, Gabe has a very different plan of action for freedom. He figures if he runs fast enough, he can out run and out smart the adults watching him around the pool. For the most part, he is right. He never stops to indicate he's jumping in. He just leans forward and plunges in. I call it the Dead Man Dive. Unfortunately, it has some truth to the title. Very soon after these clever stunts to him and heart attacks to us, we decide it is time for snacks.

In order for SD and I to snack sanely and unrushed, Gabe has to be restrained, if you will, especially around the pool. To our dismay, SD and I forgot to pack the stroller. If only you could have seen our poor beaten down and tired souls. It was truly a sad sight. What was even more funny, was we were surrounded by childless people. People who did not see the predicament SD and I were in. Luckily, I am one to find a way when it comes to our survival. I got Gabe's car seat and strapped him in. I wish I had a picture, but at the time I think I would have been too tired to take one. He looked so comfortable there eating his snack in a five point harness!

Snack did not last long and off we were again in the pool. Half hour longer and then home we would go. This was when Gabe got on a floaty, I'm holding on his Speedo/body life vest the whole time, and takes a dive off the other side. I had a firm grip on him, but his face went under a little along with his ears. He just got tubes in his ears and now I'm wondering if he will be OK. Gabe would not let me put anything on or around his ears before we swam to protect them. He's 2 and I didn't think I would win that battle. He's ears are not bothering him, but could water have gotten in his middle ear again? Would it just drain out? I'm going to Google and find out.

10 minutes to go. Boy, I missed talking to the other people. They would come over and talk to us for awhile. I felt like I was at a great pool with my great kids, but we were on the kiddie side and all the adults were lounging pool side or having a drink as they floated around in their raft. Then it happened. The only other couple there, took their ONLY child and showed him how to jump off the diving board. Before we could shield Gabe's eyes, The boy made a cute laugh and splashed in the water. I'm not sure how it happened, but Gabe was out of the water and running to the diving board. Our friends' husband was sitting on the board by then and blocked Gabe before making his gold medal dive. Now, it is quite a compliment to me when a big, strong guy tells you that he is having trouble holding back your son. He will now understand the sweat on my brow accompanied by a strained expression when I hold my son. I do not normally look like that.

It took awhile to get Gabe to peacefully leave the diving board. We let him jump fully guided by SD's arms into the water. Thank God that his grandparents do not have a diving board at their pool.

We had a great time, but it was quite an eye opener to how fearless he is with water. We will not be getting a pool anytime soon.

Am I a Hypochondriac????

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Could it be true??????
**** Today we got another test back.....and you guessed it NORMAL....NORMAL......NORMAL!!!!! To most this would be great news, all is well, ice cream for everyone! But, to us it means more research, more wondering and more appointments. Our son, so far (Thank God) is the healthiest Autistic boy ever known to the medical community of which we live. Every test comes back normal. No wonder I look like a hypochondriac. What the doctors do not see and can NOT explain is the following: Vomitting all day in throat (GERD, but what is causing it???) constant diarrhea, some sort of verbal processing problem and that is all that we can SEE. I know that there are some biological illnesses that accompany Autism and all we want to know is why is our son so healthy, yet so sick? Are we missing something? Bacteria in the gut? Immune system defficiancy?
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Would someone in the medical community kindly give me a list of the tests I need to help my son??????????????
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It's a ###@@@!!!!! puzzle trying to read all the medical jargon and latest proposed treatments that MAY work and MAY be fraudulent. Have an ingrown toenail????This is what you do....They have doctors and specialist that deal just with FEET!!!!!!! What about my son. ???????
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* WHEW.....Deep Breaths........(Mantra music playing in the background now...) I just have to let it out sometimes. This is the most frustrating thing in my life that I have ever had to deal with. And to think I used to believe it was Rush Hour!
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I have to give a BIG, warm Thanks to all of you that have been supportive. I must say the most valuable medical advice I have gotten was from other families who are dealing with the same thing. Thank you..Thank You....THANK YOU!

From Adventures in Autism Blog

Adventures in Autism

http://adventuresinautism.blogspot.com//

I do not think this can be stressed enough.........


What Epidemic?
The Age of Autism: What epidemic?
By Dan OlmstedAug 1, 2005, 20:28 GMTWASHINGTON, DC, United States (UPI) -- *
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One of the core questions about autism is whether it actually has increased at startling rates or if it is just better recognized than it used to be.Officials at the Centers for Disease Control and Prevention in Atlanta say they do not know the answer to that question but are trying to find out. Some medical experts say they think there really has been no upsurge in cases, just more public awareness and broader diagnostic criteria.Don`t tell that to many parents of autistic children -- parents such as Kendra Pettengill of Roseburg, Ore. She got in touch with UPI`s Age of Autism to explain why she finds that argument not only ridiculous, but downright revolting. Because of the clarity and power of her comments, we decided to run them at length.In future columns we will print observations by those who think there is no autism upsurge. If you agree, please get in touch.Here are excerpts from Kendra Pettengill`s comments:If I hear one more reporter repeating the mantra that part of the autism increase is better diagnostics, I will simply go mad.
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Anyone who has seen even one child with autism knows that not one of these kids would ever go undiagnosed.We would have to believe that 10 or 20 years ago a parent would not have demanded to know why their child had regressed after being normal. Would not have demanded to know why they suddenly couldn`t relate to the outside world. Would not have demanded to know why they persistently rocked, flapped their hands, walked on their toes, bit themselves, pulled out their own hair and banged their heads to the point of serious damage. Would not have asked why their child had hundreds of meltdowns every day and could not stand a change in routine.Would not have questioned why their child would not make eye contact, or screamed if they were touched or held. Would not have questioned why certain textures, foods, sounds, colors sent their children into a wild tailspin for no apparent reason. Would not have questioned why their child only ate three foods, but would chew on wood, sand, or fabrics. Would not question why their child could not speak at 2 years old, or why he could speak and then suddenly stopped abruptly never to speak again.Parents, it would have to be believed, would not have questioned the litany of medical issues that their child with autism also faces. You would have to believe that schools and teachers also somehow missed all of this and these children managed school and just slipped through the cracks. To believe this you have never seen even a mildly autistic child.No child with autism ever went undiagnosed.
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I have been dealing with this for four years and I am still appalled that this has not been declared a national emergency. What if you announced tonight that 1 in every 150 children were being abducted from their beds every night? Parents would be screaming for the government, the police, somebody to do something. Well that is what is happening, except they are only taking our children`s brains and leaving the body behind.
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Many scientists, doctors, teachers and parents know that the increase is real and it is most likely due to an environmental assault such as vaccines. Denial using the "changed diagnostics" line serves no one. It leaves parents like me on the fringe of society, dealing with a devastating disease with no assistance. It abandons a generation of children that could be helped in many ways to become contributing members of society.I beg anyone who believes it is better diagnostics to find all the 20-, 30-, 40-something people who have autism and were somehow missed in the process of life. They must be out there somewhere -- they went through 12 years of school, possibly college; married; got jobs, and were somehow missed as autistic.Here is a hint. If they did all those things without being noticed by anyone, they are not autistic.
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This epidemic now is made up of kids who cannot do any of those things. They have no friends. For the most part they cannot even function in a typical classroom, let alone be missed in one. They can`t comprehend classroom directions; hence even in a typical classroom they need an aide to ensure they gather the proper information and make it through their day.Every teacher or school person I speak to says with utter fear in their eyes, "Something is very wrong with our children." We are being inundated with autism, ADD, ADHD, speech delays, tics, Tourette`s syndrome, asthma, insulin-dependent diabetes.I look back on my entire life, and I cannot come up with one single person I knew in grade school, junior high, high school, college, the Air Force or workplaces who exhibited what even I would easily recognize as even mild symptoms of autism, let alone a full-blown case.There was a blind guy in my school who also rocked a lot, but so does Stevie Wonder. He also had no other symptoms of autism and even wrestled on the varsity team. You would think if it has always been this prevalent that I could recall at least one, if not many, people who would be questionable.No, none. But then again, I didn`t know anyone with asthma growing up, no children with ADD, ADHD, no kids or classmates with bipolar disorder or Tourette`s either. Come to think of it, I never knew anyone on anti-psychotic medications, nor do I remember prescription cubbies in the classrooms like they have now to monitor and dispense all the inhalers, Ritalin, Risperdal and the like.
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The teachers and educators and parents are right. What is wrong with our children that 1 in 6 has a developmental disorder, including speech delays, tics and autism on the severe end of that?Those claiming better diagnosis instead of a real autism epidemic need to get out of their research clinics, get their noses out of their papers full of numbers that apply to no one in America, get out of their ivory towers, get out of their government offices and look in every small clinic, classroom and parent support group across America.They will instantly know that not only is there an epidemic, it is actually 100 times worse than the worst-case scenario they could dream up in their worst nightmare. The denial of the numbers does not make them go away and cannot reduce them.No child with autism has ever gone undiagnosed in any setting, in any decade, in any loving home, caring community or concerned school or classroom. Only in their unrealistic dream worlds can these "experts" continue to deny the millions of afflicted that continue to grow at record pace.It is time this is stopped. Autism is an epidemic and a national crisis.E-mail: dolmsted@upi.com
posted by Ginger at 11:47 PM 0 comments

Gabe's quest for The Four Seasons

My favorite part of the day, is in the evening when I check on my two children sleeping. My daughter is normally surrounded by her My Little Ponies and Gabe, well....we always have to figure out where he is in his room. In the first picture, you'll notice that he has his matress on the floor. It is because he used to have this great Fire Truck bed that he loved, but after a few months of sleeping fine in it, he decided to lay UNDER it. Each night he would go and lay under it and wouldn't you know it, get stuck. This happened for a few days. Boy we hated to see that bed go. I sold it to a neighbor and had to put his mattress on the floor along with the clothes he loves to pull out of his drawers. Another sleeping habit that I have noticed is Gabe's need to search out an air vent in his room to sleep on. He's doing it in the picture above. I think that he likes the hum of the air. He also wraps his blankie around his head like a turban or scarf. He's always been a great sleeper, just sleeps in strange places. One night, we found him between his new bed and wall. There is just enough space for him to lay down. We have rails on both sides, so I do not think he fell out. We have moved him into a larger room with a bed , armoir and some room for some quiet toys to play with if he wakes up early. Everything in his room is bolted to the wall. He seems to be doing better. I put him in his bed when I go to bed at night and I think he stays there. Anyone else with children who love enclosed spaces or the hum of a vent? I find it endearing, other people I have metioned it to gave me a strange look. To me it's just Gabe.

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?"

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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.
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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.
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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.

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.
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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.

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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?
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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.

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.
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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!)
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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.
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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.
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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.
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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)
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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.
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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......

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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.

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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.

Can anyone help me with my side bar information?

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HELP!!!

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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

5 DAYS LATER

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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!

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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" !)

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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)

Welcome to Holland

Welcome To Holland

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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.

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My Son, Gabe

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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.