Thursday, April 16, 2009

Progress Report

Well, we are about 3 weeks into our new supplements at full force and we are definitely seeing improvements! Both Kynsie and Kyan are SIGNIFICANTLY more calm over all. In addition, we have seen some good language improvements. Kynsie says: "Mommy, I want XYZ" Whatever it is that she wants. Nice sentence structure, Sis. Kyan too seems to be improving his receptive language, which is positive though less noticeable. One thing we have not seen marked improvement in is the scripting and repeating of words and phrases. We also are not seeing language progress in a more general sense in Kynsie & Kyan. Example. Braylen is looking at a book. He says "Look mommy. It's a dog." I say "Yes. It's a dog. What's he doing?" "He's running mommy". Kyan or Kynsie looking at same book. "Dog, mommy." I say "Yes. It's a dog. What's the dog doing". They say, "Yeah, mommy. It's a dog". And continue to label things. In fact, they are OBSESSED with labeling things. Meaning--telling you what they are. In books, they label animals and objects over and over and over and over. Just imagine a 3 year old saying Lion, Lion, lion, lion, lion....over and over. Finally the 15th time (literally) Isay "Yes. That's right", just to stop the madness, but oh no. What do you get? Lion, lion, lion, lion-another 10 times. I say "you got it bud" trying to avoid this bad pattern of repetition and echolalia . And then once we hit about 30 "lion"s I give and say "YES. It is a LION!" "Dog, Dog, Dog, Dog, Dog...." And it starts all over again. That times 2 is TRULY maddening. I am grateful that they talk--VERY GRATEFUL, but the repeating will make you CRAZY!

All of that said, we have still seen good progress. Kyan accidentally got something with gluten in it yesterday and we are paying the price today. NASTY diapers, stimming and pacing, and lack of play with his siblings. Not to mention meltdowns. Poor guy. It will take 6 weeks to get that out of his system. I hope its not 6 weeks like today. He was doing a lot better. The hitting and overall tantruming has been MUCH improved. I am anxious to see if the gluten infraction puts us back at square one. I SINCERELY hope and pray not.

On another note, I wanted to share with you something that I say and write often. As hard as our fight is, and some days it seems impossible, we are TRULY blessed that our kiddos are as high functioning as they are. I want to share a post from a parent on an autism board. At first you may giggle--don't feel bad if you do. I did too. But then think about what this parent must go through on a daily basis. I will take a full-blown tantrum every day of the week and twice on Sundays over this experience. See below:

"So my son has this very embarrassing behavior.... He likes to smell people's butts. (Oh, how I wish I was kidding!) Family, strangers, it doesn't matter! He had a dr's appt yesterday and went up to a little boy and tried to smell his butt, but we caught him before he got that close, and sat him on a couch. But the little boy also had autism, and did not like his personal space being invaded, so he came over and whacked my son a couple times. Can't say that I blame him, really! If someone came over and tried to sniff me there, I'd be a little upset, too!! :-) I have no idea why he is doing this, but it is sooooo embarrassing. Trying to explain it to strangers is awful; I have no idea what to say! He is very much a "smeller," he smells everything. A person's butt is really not an appropriate smelling object, though, so any suggestions on how to handle this would be great! "

Now, I figured that might be unique to her child. A fluke. BOY was I wrong. Here are some of the responses. WARNING: some are graphic and GROSS. I am posting this simply to educate. This is what people are dealing with all over the country, every day. That mom you saw in the grocery store with the unruly child--this might be what she is dealing with. And if so, God Bless her. If you are brave, read on. *Put that sandwich away*

Responses:
1. that's a hard one! We went through a phase where my son would try to stick hisfinger up people's butt's!! (didn't last long, thank God!).

2. My son had HUGE HUGE sensory issues with sticking his finger up his own rear,pulling out poop and then smelling it ... anyplace, anytime! We remedy that temporarily until he healed enough through biomedical by spraying a natural perfume onto his neck, clothing etc... so that all throughthe day he had something to smell. It has to be strong! But that is one of thereasons they smell poop/rears ... is that is a STRONG odor and something thatthey can actually smell. I think it is there way of trying to "waken" up asense that isn't functioning well.Another option is to put something really stinky (ok gross I know ... but works)into a film canister with tiny holes on the top that you can put in a convenient location ... (for my son ... I strung a piece of thread through the bottom andplaced limberger cheese in the canister) ... He had it to smell anytime he needed it. Didn't take long ... but soon the poop smelling guy went away ... And then westarted limiting his time to the "perfume" etc ... phasing it away ...Now with healing ...AND with training ... he no longer seeks out that sensory input.

3. I don't have any advice to offer, just wanted to let you know you are not alone.My son's big thing is bare legs. He loves to hug, squeeze and stick his headbetween thighs. Of anyone and everyone. I dread summer so much!!!! Shorts arebad enough but skirts/dresses are dreadfull, he will go right up a womans skirtto get to her legs. Very hard to explain, right now he is still small enough(4yrs old) that people dont get too bent out of shape about it. I just hope heoutgrows it before he's old enough it gets "creepy".

I post all of that just because it is just a SMALL slice of the craziness and truly sad, sad situation that is Autism. Some kiddos are self-injurious. They bang their heads against the floor, cribs, the wall, etc until they are black, blue and bloody. Some even wear helmets every day to protect themselves. This behavior can be out of frustration, pain, or because their senses are so dulled by toxic overload and other physiological issues that they truly can't feel the pain. Parents often don't know why thier children do this or how to stop it. Too sad. Other parents have children who never speak at all. Some kiddos drool constantly. Others are poop picassos. It's just really hard all the way around. We are blessed. Truly blessed that we have it as easy as we do. Just the same, I feel like we are barely holding on. How do these other families feel?

5 comments:

All About the Bailey's said...

Wow. I know a little guy that smells your head or hair. He smelled mine but never smelled it again..guess my shampoo wasn't what he liked..lol
Thanks for posting, we too feel very blessed to have not had these issues.

All About the Bailey's said...

I also meant to tell you that it must be very exciting to see improvements with your kids...I pray all our kids improve more and more every day.

Tothblog said...

I am so glad to hear that the hitting is better. You have definitely made me more aware of how children's behavior could be attributed to deeper issues. I find myself saying to others "you might not know the whole situation" and being very defensive.

Tracey said...

I am glad you are seeing improvement with you children! My kids are high functioning as well and we have been fortunate to not have some of the more severe issues. I do think about the parents that have it harder than I do and they are real heroes in my book. They truly are amazing and the challenges they must face daily just blow my mind. My hat is off to them. Autism is a rough road and more rough for some than others. God bless them all! Again, glad to hear of the improvement. Wishing you much progress and lots of good day ahead!

Tracey said...

I am glad you are seeing improvement with you children! My kids are high functioning as well and we have been fortunate to not have some of the more severe issues. I do think about the parents that have it harder than I do and they are real heroes in my book. They truly are amazing and the challenges they must face daily just blow my mind. My hat is off to them. Autism is a rough road and more rough for some than others. God bless them all! Again, glad to hear of the improvement. Wishing you much progress and lots of good day ahead!