Boneless

When Cotton is faced with a situation that he can not handle, he goes boneless. Just completely melts, and becomes utterly detached. He never screams, or cries, he simply just drifts off into his safe little world. RDI is slowly helping him feel more competent in new situations. The goal is for him to have a repertoire of success upon which to apply to future "uncertain" situations. He is already getting better at this. For example when out in public it is rare to ever hear a peep from Cotton.

However now that he is better at coordinating, he is sort of forced to pay attention, in order to keep up with us. This simple action keeps him in our world. I have found the more I integrate gross motor skills, the less likely it is for Cotton to go boneless. He has to always stay in tune with me in order to know what to do next. Being able to depend on me to help him through uncertain situations, has also been a big help. Providing brief moments of uncertainty in these RCR's gives him the memory of being able to handle those moments, and use this confidence to do it again.

Activities I find helpful:

Chase

Hide and seek (modified chase)

Walking

Pushing a wagon or grocery cart (I pull he pushes)

Carrying basket together in stores, or for the laundry

Our 2nd RDA

Well, we had our 2nd RDA this week. It was exhasting, but very informative. We saw a lot of progress, and some gaping holes. My consultant is putting together a video of the highlights from this RDA from the last, this will be great to see, and great tool to show to Cotton's therapists. One of our biggest challanages is getting Cotton to use what he has learned through RDI in the real world. He does a fantastic job in our little bare room. He is certainly branching out into the world, but it is going to take time, and scaffolding. It does not take much to make my little boy shut down. So I will have to gently and slowly guide him. Gosh, over all the changes in him are amazing. Most notably is his desire and joy in looking into our eyes. He is no longer overwhelmed by gazing at us. He seeks out our faces, and holds our gaze for a long time. He enjoys our reaction and seeks it out. He can gather information, from our non verbal communication, he has a better grasp of intent (wich is huge considering his auditory processing dificulties). We have so far to go. So one step at a time.

Last deployment!!!!!

OK, so we have lived here for 4 years, in the military, that is a lifetime. My husband has been deployed 2 of the 4 years we have lived here. That means births, deaths, diagnosis, re-diagnosis, IFSPs, IEPs and every acronym you can think of have all been done while he was in the desert. Now after 10 of these deployments, we have reached the LAST one. At least for the next four years!!!! I can see the finish line, and I have to say I did not have the strength for the last 2 deployments, but now I am renewed that there WILL be an end!!! We move in May, and we will be moving to a non deployable base. So, even though he is about to head out the door again in that dreadful khaki flight suit.(I have come to detest that sand colored suit). I am happy, because it is going to stop. We can plan a vacation! Buy plane tickets, or spend our first anniversary together (we've been married 7 years!)

Sleep issues

Like many kids on the spectrum Cotton has sleep issues. No matter what we do, he is awake from 3am to 5am. He then returns to sleep, just in time to be super grumpy for school. During this time we have two options, 1.Let him rummage around in his room until he goes back to sleep (this can be noisy) or 2. Put him in bed with us and let him kick and flip around until he falls asleep again. I am not happy with either of these options, but I don't think this will change any time soon.

Anyway, we had a bit of a dysregulated day today. Grandpa came up to help us move all our junk out of our house and into a storage shed so we can attempt to sell our house. So Cotton was a little off. So we sat on our bums and bumped down the stairs, referencing me for when to go next, and adding a little variation, by moving up a step instead of down.

One really exciting thing that happened today, we were playing a tickle game (just emotion sharing), and Cotton actually tickled me back! He was totally feeding off my reaction, it was just pure fun. Those are the moments that make up for the 3am wake up call.

What to do....

Mr. Chief's to do list....

1. Practice evil laugh

2.Play in toilet

3. See if my big stuffed Elmo wants to play in toilet

4.Taste all the small objects I can find.

Cotton's to do list.....

1. Ride plasma car

2. Play trains

3. Ask mom for cheese cubes 500 times

4. Ignore mom when she says "Let's have fun" (nothing good can come of that)

Mom's to do list.....

1. Call plumber

2. Take Cotton to Dr. for constipation

3. Ask consultant why Cotton is ignoring all declarative language

4. Take current picture of self. The only pics of me I have are either right before, or after giving birth, and I am not about to post those:)

Sick:(

Cotton was such a sick boy today. He stayed home from school, and watched Baby Bumblebee videos all day. So, I will talk about what we did to coordinate yesterday. We went to the grocery store, and I would point to what I wanted on the shelf . He would reference me to see if that is what I wanted, I would indicate with head nods and he would either hand it to me, or put it where I was non verbally indicating. I tried to add a little uncertainty, but he really did not get my attempts. I ended up just acting like I forgot to hand it to him, or play tug of war with the object. He walked along side the buggy, and we would do variations, like going fast, slow, or galloping. I sure hope he feels better tomorrow.

The premeditated UH OH!

So it is time to introduce Mr. Chief, not to be confused with mischief;) He is a bundle of energy! Full of ornery, gooey, grimy, puppy dog tails, and all things little boy. I love my boys... can you tell? So, as of right now he loves dropping things, and saying "uh oh". I know this happens with most kids his age but hey, this is MY kid. I truly love the premeditated uh oh. Where he says "uh oh", and smiles that adorable, one dimple smile, and waits to watch our expression as he throws whatever happens to be in arms reach toward the ground. He keeps me and everyone else busy. Cotton is just starting to realize, that he is a permanent member of the family. Mr. Chief thinks Cotton is a FREAKIN' ROCK STAR! I try very hard to stay out of it, and let them forge their own relationship. Free of the over controlling mother, they all know and love.

What the heck is albinism?

The word "albinism" refers to a group of inherited conditions. People with albinism have little or no pigment in their eyes, skin, or hair. They have inherited genes that do not make the usual amounts of a pigment called melanin. People with albinism always have problems with vision, and many have low vision. Many are "legally blind," but most use their vision for reading, and do not use braille. Some have vision good enough to drive a car.
Vision problems in albinism result from abnormal development of the retina and abnormal patterns of nerve connections between the eye and the brain. It is the presence of these eye problems that defines the diagnosis of albinism. Therefore the main test for albinism is simply an eye exam. For more information on albinism please visit NOAH (National Organization forAlbinism and Hypopigmentation) at http://www.albinism.org/.

So as far as Cotton is concerned, he seems to have "OK" vision. Being that he is non verbal, it is really hard to tell exactly what his vision is. He can identify letters, shapes, colors etc. He also uses PECS to communicate, and so I usually just say that his vision is "functional". There is nothing that he can not do at this point. Typically people with albinism are just like everyone else, however, Cotton's co occurring condition of autism makes him extra special. So, Cotton wears glasses, lots of sunscreen, and a hat to block out glare (people with albinism are very photo sensitive.) Other than that I honestly don't think too much about his albinism.... I am a little jealous of his beautiful White hair, however:)

Muda!

Me, "mother", him, "buuuda", "mother".... "bupp"...."mmmmother", "muda"! Yeah!!!!!! me "mother"... him"bupppu". AAH the joys of apraxia. This conversation is actually a lot of progress. When Cotton was about a year old, soon after he lost all language, he started to drool. Not drool like a baby drools, but like a person who has just been given a shot of Novocaine. As you can see from the picture, his entire neck and mouth broke out in a horrible rash. It took us months to get the rash to clear up, and years to get answers.Verbal apraxia affects the programming of the articulators and rapid sequences of muscle movements for speech sounds (often associated with hypotonia and sensory integration disorder). Oral apraxia involves non-speech movements (e.g., blowing, puckering, licking food from the lips)http://www.shop-in-service.com/apraxia.htm#W

As a result cotton is non-verbal and has "feeding issues". It is very difficult for him to take bites of food. Although he can chew with little effort. Instead of taking bites, Cotton will shove the entire food in his mouth. We do many oral motor exercises, and he has made a lot of progress. He can say cracker.."cacka"...bacon..."cacun"....santa.."tanta"... and muda (sometimes). So how do we add these exercises into our RDI program? Well here are a few examples..

Blow down daddy... together we blow and blow until daddy falls down.

kisses.... standing facing each other we time it so we kiss in the middle, (Cotton has to practice this with a closed mouth;)

Blowing bubbles in our milk at the same time.

to name a few.

I love my plasma car!

Cotton is doing much better coordinating. We went to the mall today and he did a great job walking with us! We did not even have to hold hands. Stage 3 has been the toughest stage for us so far. I think we still have a bit more to do in this area. Cotton does a great job with the giver taker role, but doing things at the same time is a little more difficult. He loves his new plasma car! I walked and he rode his plasma car to the mailbox. He kept pace with me no problem, when I stopped to get the mail, I turned around and headed back toward the house. He wanted to go the other way. Usually he would have just kept going but instead he turned around, referenced me, saw that I was going the other way, held out his hand and waited for me to join him. We walked and zoomed around the entire block stopping and starting together. He was very much in tune with me. Something that never could have happened 5 months ago.