Thursday, August 25, 2005
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????
Monday, August 22, 2005
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.
Thursday, August 18, 2005
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.
Saturday, August 13, 2005
Friday, August 12, 2005
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.
Thursday, August 11, 2005
Wednesday, August 10, 2005
#1) The first picture shows The "pirate people" climbing up the stairs. They climb up, then slide down where it repeats over and over.
#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!!!!!)
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???
Sunday, August 07, 2005
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.
Thursday, August 04, 2005
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?
Would someone in the medical community kindly give me a list of the tests I need to help my son??????????????
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. ???????
* 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!
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!
Tuesday, August 02, 2005
I do not think this can be stressed enough.........
The Age of Autism: What epidemic?
By Dan OlmstedAug 1, 2005, 20:28 GMTWASHINGTON, DC, United States (UPI) -- *
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.
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.
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.
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.
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.
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: firstname.lastname@example.org
posted by Ginger at 11:47 PM 0 comments
Monday, August 01, 2005
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.