OOOPS!

Sorry guess I am a little hard to find these days I have mac, and for some reason blogger will not let me create a link..... so here is the adress....

http://web.mac.com/aburgess2/iWeb/Cottontales hopefully this will get you somewhere?!

New Blog!

I have a new blog site! Come and see.....

http://web.mac.com/aburgess2

Monkey business

Nothing will challenge a marriage more than home improvement. Not even Autism can produce as many fights, as "what counter top surface should we choose?". My kitchen (which we are remodeling) is almost done. Three fights, and 2 compromises later we have new appliances, now my husband and I are back again to figure out the counters!!!

The problem is I am cheap, and he is well, OVER THE TOP EXPENSIVE! His theory (and he says this often) is "if your going to be a monkey, be a gorilla." I always retort, that "I would rather be a chimp, they are a lot smarter". So my dear husband and I have one more round to go. If anyone has any wonderful counter top stories, I would be glad to hear them.

By the way, I am for tile, it is fairly inexpensive, and we can install it ourselves (see cheap above).

Unconventional

Yeah, I am not really sure what is going on in this picture, but it fits our week. We have started mixing it up a bit. Doing the most odd things to get Cotton use to variation. We unloaded books from the dishwasher, made animals make the wrong noise, and walked backwards to the mailbox.

Cotton does not understand that this is suppose to be silly. He thinks I have lost my mind. It is pretty entertaining for me at least to be working on a new objective. Mr. Chief loooves this stuff, he is jumping in with both feet.

On a good note, I took Cotton for all of his initial evals. for OT, PT, and ST. They all commented on how well behaved he was, and willing to participate, I was a proud mama. They are also very interested in RDI, and "said" they were committed to keeping things consistent. We won't start full force until next month, but for the moment, I am pleased.

Unconditional

I have been homeschooling for a few weeks now, and I am quickly discovering (at this point at least) that this homeschooling program has much more to do with MY education, than that of my children. It has brought to light many of my weakness', and I am seeing my kids grow, as I do. One of the main philosophies is unconditional love, at first I thought, "got that one down ( I almost skipped the chapter)". But, to my surprise this is by far one of my biggest challenges. In their terms unconditional love is accepting a person as they are right now. Seeing through the "behavior", and loving the reasons for the behavior. And, most importantly not wanting your child to be any different than they are right now. That is not to say, they will not grow and change of course, but this full acceptance thing really stuck in my gut. I am not very good at this. Ever since I learned of the "A" word, I have been waiting for Cotton to change. To talk, or be like all the other kids. This attitude has been a disservice to both of us. I have been trying to approach things differently, not trying to make him do things, rather to enjoy the process. This has not made much since to me until now. Even now, I am only beginning to grasp the concept. I was watching him stack his blocks,(a stim mostly) over, and over again the same blocks, the same order... usually this would annoy me. But this time I tried to see, how much Cotton loves order, and how much like me this trait is, I feel like I saw him more clearly than I have in a long time. The mood at the house is light and lazy, we are really enjoying our "free" summer. Cotton continues to use more signs daily, with out prompting for real communication. I am taking my time though. Absorbing what I have to learn and letting it soak in before I can say I am a successful homeschooler, this is a process I can see, I have a lot to learn.

I have mentioned before, that Cotton loves to swim. Today was no different than most. He starts the day insisting that he wears his swim trunks, which is fine, clothes are optional at my house right now (at least for the kids). We spend half the day getting muddy, and the other half getting wet, and I am not a huge fan of laundry. Today, however it was storming so swimming wasn't really an option. Cotton pulls me to the door, looks up and nods. I say "no I'm sorry honey, it is raining." All of a sudden Cotton pulls his little hand up to his chest, and signs "please"! I have NEVER prompted him to sign this ever (which, now that I think of it I should have), but this was totally his own. This broke my heart, I said, "I am so sorry we can't"... THEN he signed "swim, please!!!!" Again I have only showed him the sign for 'swim' once, and it was months ago!!! I was so excited I filled the bathtub and let him swim in his trunks- not quite as fun but they had a good time taking a bath in the middle of the day.

Initiation

We are knee deep in boxes here. But surprisingly I have found ample RDI moments. It has been such a treat having both kids home, I feel like I am finally getting the hang of it. I can seize an opportunity for RDI anytime of the day. Our big goal right now is to get Cotton to initiate, or even re-initiate. I am not sure he even knows he can start an action. So that is where we are with RDI.

Things have calmed down so much since moving in, we have been spending hours at the pool, and I have started homeschooling. I decided on Oak Meadow curriculum. It has the whole Waldorf feel, but it has much more structure, I NEED STRUCTURE!! The services down here stink. In the fall they offer a dev. delay preschool, that is only 2 hours long! They really have nothing durring the summer, so as soon as I get my referals, I will start interviewing OT's, PT's, and ST's! (they do not have teachers for the visually impaired, so I will have to shop a little further from home.)

I have to laugh because, I always sort of forget that Cotton is visually impaired. It just seems like the least of his worries. I actually had to call the Dr.(that issued my referals) back and say, umm... I forgot to mention he is visually impaired. He does really well with his vision. He seems very capable of seeing up close, he can see numbers and letters written in big print. He recognizes pictures on 2x2 cards. I can really only tell at a distance. If I ask him to bring me his pants, 5 ft. away, he cannot see them, and when we are in a group he will go up to people and pull them down to his level to see if they are me?!

Sometimes, it is hard to tell what is vision and what is Autism. For example he glides his hand across the wall as he walks around. He also tilts his head up to see out of his "null point" ( the point at which his vision is most clear). I went round and round with an aide once who was convinced that this was a visual stim, that needed to be stopped. His ped. opthamologist assured me and her, that this was necessary to maximize his vision.

So far Cotton is responding to my effeorts to encourage initiation. I am hoping this will filter down into other areas as well. He has been asking me to read to him this week. Usually he just walks around with the book in his hand, or reads it himself. This week he has physically put a book in my hand, and looked at me smiled, and nodded yes. Horay for small victories.

I'm HOOOOOMMME!!!!

Yeah! I am officially in my new house!!! After 2 months of limbo, I am finally at the finish line. Just 6 more days, and I will have furniture too. The kids are so excited, they have been running through the house yelling and screaming. Cotton was sick all last week, but he seems to be on the mend. Mr. Chief is playing trucks, and wearing the band off the curtains as a headband:) I was planning on donating them anyway.

SHHH!

In an attempt to stop vocal stims, I have decided to turn off the TV, radio, and all other electronic devices during the day. How can I expect Cotton to stop humming if he hears jingles and kids songs every waking hour. It was like coming off crack today. I hear the signing time lady singing "baby signing time, baby signing time." in my head, and realize how much noise we hear all day.

The kids usually watch videos, when I am in the shower, and when I am making dinner. Yesterday, I had the kids play with pots and pans while I cooked. Mr. Chief had a lot of fun, Cotton was not as impressed. I will have to get more creative.

Cotton is doing some new things spontaneously recently. He started using a fork, and taking bites of his food. Both of these activities have been difficult for him, and I am grateful he was able to pick this up. While we have worked on this it has not been a focus, I am excited that he has learned something without hours and hours of practice. This may be a first for him.

My little duck

While things are not perfect right now, I thought I would focus on something positive. Cotton is learning how to swim. He is doing great, with little instruction. We started with a life jacket, and a floaty, now, he is swimming with just the life jacket. He really loves the water, and has asked, using an actual word (iimm) to go swimming.

So we lather, and I mean coat him with my favorite blue lizard sunscreen and his spf 50 protective swim gear, and head for the back yard. He is going to have to learn to swim, God help him he is so lubed up, he would slip right out of my hands.

I SUCK

There is no other way to say it. I have had Cotton "home" for exactly a week, and I am totally coming unglued. How do I split time between the kids, get any RDI in, and not go horse from yelling at everyone!!! I had all these plans about how wonderful it would be to not do school durring the summer, but I am a bit overwhelmed at the moment. Cotton wet his pants, first time in months, pooped in his pull up 3 nights in a row, (also not usual for him). He is stimming like crazy on every magazine he can find. My dad gave him a phone book while he was watching him, and he happily looked through it for 2 hours!!!!! AAARRGG I know the stims come and go, but I (to my chagrin) get so angry about them!! Especially the vocal stims. The crazy wacky sounds that pretty much paint a huge yellow sign that says AUTISM.

I know next week or hopefully tommorow will be better, but right now I am mad at myself for not having it together, being angry about vocal stims, and hiding the phone book. I want to be DOING things all day, not redirecting ALL day. So I am going to sit and try and be patient. These episodes usually go as quickly as they come. so this is me being patient.

Over the river and through the woods...

Yeah, we are finally at Grandma, and Grandpa's house! It looks like Cotton is rounding out stage 3 and 4 of the old stages!! Stage 4 has been coming along nicely with stage 3. I knew this would be the easiest stage for him, as it is a strength of his.

However, I find myself very focused on referencing activities. His referencing is still very scaffolded, and I want it to become more natural before I move forward. We are starting to look at the new objectives as well. There are a few in stage 1 that I want to spend some time on, but for the most part I think we are early stage 2.

I really like the new objectives, they are so detailed I feel like we will leave nothing out! We had a great day fishing, Our coordinated action was throwing stones in the water. Together, taking turns, I hand him a stone, he hands me one. You get te idea.

Language, language, language

Cotton as I have mentioned before is non-verbal. Completely meaning he has zero recognizable words, he gives good attempts and does his best to mimic me, but if you did not know what I was saying you would have NO clue what he was saying. Mind you this is not in my opinion communication, but he really needs practice using his mouth to form said words (which he will eventually:)

Anyway my delima is how to get this practice without constantly prompting him, and ignoring his non verbal communication, (which I actually count as communication lol). My consultant came up with a good idea of using familiar songs, and stopping at a word and practice that word, and move forward making it fun. I am totally up for trying this, but it is so frustrating!!!! His ST has actually said he does not think Cotton has apraxia, because his oral muscles work fine, it is just the communication from the brain to the muscles to form words. I would take ANY real word at this point!! So I am going to try songs and more songs, if anyone has any great ideas, I am all ears.

Jumping through hoops!

Ok, so I know it is not about teaching any skills, but I am so darned proud of this one. So, I took the old stage 2 standby of walking from chair to chair, referencing to see when and where to continue, and added throwing a ball back and forth. Not only was Cotton (who has major visual challanges) able to do this, he had a blast. This one blew me away! We also worked on putting two puzzle pieces together each holding one piece, not nearly as cool, but coordination none the less. I plan on changing my blog site soon, I have a mac now and they have a nifty blogsite so I can show video, I want to show this one off lol.

Otherwise things are going good. I of course would love to sleep in an actual bed. I can truly appreciate, having my own room, sleeping in a bed, having a closet.... I will not take these things for granted for a while. Next week we move in with grandma, I am looking forward to getting there:)

Cotton and I played a fun games on some stepping stones today. At first I would point or indicate to the stone he needed to step on,(stage 2), then We played a game of follow the leader (stage 3), then we added variation to it, by jumping to a stone, moving to a stone backwards, etc. It was a fun time. We are still doing a lot of walking, running, trotting (whatever) together. This really seems to regulate him. Yesterday we pulled and stopped with our suitcases together. For a little variation we would push our suitcases instead of pulling them. We tried to carry them, but Cotton's was too heavy. It was good for uncertainty. So we had to carry that one together. Over all he is doing much better, and for that I am grateful, only a month and half more to go!!!! Mr. Chief is in heaven, he loooves all the changes, flirting with the house keepers, and pulling the cushions off the couch to pull out the beds:) He is full steam ahead to the terrible two's. He is gaining words daily, it is absolutely amazing to me.( I love it).

Foot hold

I am happy to report that things are slowly getting better. Cotton is back, and connected, there seems to be ample opportunity at the TLF (temporary living facility) for coordination. We are havig fun again!! I also got my new computer so although I do not exactly have internet, I am somewhat starting to "reconnect". For the past few weeks, I have focused hard on stage 2 which for Cotton leads directly into stage 3 stuff. It has really paid off he is referencing better than ever. Coordination is snapping back into place as a result. So yehaa, here we go.

Detatched

Things are not too well in my world right now. Cotton is a little upside down. He is starting to find his footing, but I feel like I am pulling teeth. Poor guy has been through waaaay too many changes. I am trying to give him time, but when I have seen him come so far, it is hard to see him like this.

Not to mention that BOTH of my laptops crashed!!!!! So I am stuck in a hotel, with no link to the outside world:(

CRAZY!

I am so frustrated right now. We have so much going on that Cotton is really "locking up". He is coordinating beautifully, but with NO emotion, so it is really pointless. I know we are crazy right now, dad just got home, we went to go look for a new house,he had the stomach flu, and the movers come next week. I would be crazy not to expect some sort of growing pains. It is just so hard to watch my little guy who is emerging from this shell retreat:( I know this is temporary, and he will quickly pick things up again, I just love seeing that twinkle in his eye. I am hoping to get some really good one on one with him this afternoon (and some video), it will make us both feel better.

If your child has autism......

then you have at least one room in your house, that looks

like Dr. Seuss' torture chamber.

Get in the Car and Drive!

You are looking at the first time my children have played together! Cotton grabbed Mr. Chief by the hand sort of shoved him in the car (Mr. Chief although surprised was happy to comply) and began to push him around the yard. It was so cute. Mr. Chief had a friend over today, Cotton was busy "bossing" the toddlers around, showing them who (according to him) was next to go down the slide. This is the most interest, or voluntary contact he has ever had with his brother.

HOME STRETCH!!!

This is my last week as a single mom!!!! Woo Hoo! He's coming home, he's coming hoooome! OK enough singing, I am just so darned excited. One thing about it, when your husband leaves every 30 days or so, you really learn to appreciate him. I mean he could sit on the couch and play video games for all I care, as long as I can walk down the street ALONE to get the mail, I am in heaven. Although I am sure it will be an adjustment having him home all the time, and I am not sure how to have an argument, with out the phone beeping at us telling us our 15 min are up.... If you ever want to have a good laugh try having a fight over email!! You can copy and post previous comments, concrete proof of how wrong they are:P But he is off the ground, I know that he is at least on his way, they can not back out now!!!

So, I am dwelling on the topic of receptive language again. I have been debating weather RDI is responsible for the sudden burst, or was it just that Cotton was maturing. Well, today several times actually, I got my answer. He was playing with my ipod and I walked over to him, placed my hand on his shoulder, waited for the "head pop", and said, "put my ipod on the table" (meaning dresser). I pointed to the ipod, and looked at the dresser, he did this no problem. Cotton doesn't know the word ipod, and I said table instead of dresser, he was definitely reading my intent through my non verbal communication. Yup, RDI strikes again!

New Developments

So even though I have self admittedly been a slacker RDI mom for the last few weeks. Cotton has made some pretty amazing jumps forward. First and foremost his receptive language has really begun to blossom! Seriously for 4 years I have been saying the same 3 phrases over and over, all of a sudden he is following direction?! All kinds of direction, stuff I have never said before. So I am thrilled. Also, he has started to be able to express his opinion. Perhaps a pre cursor to a developing self awareness. The picture on the left is an outfit Cotton picked out for bed. Two of the shirts are mine and of course he topped it off with Thomas. He had to have shoes to make the outfit complete. After each article of clothing was added, he would run to the mirror to see his new creation. Well, I am saving for fashion school as we speak:)

This seems to be a theme as of late. He is my little helper at the grocery store and it cracks me up when he jumps up out of the grocery cart "car", to grab the bacon and hot dogs (his favorite foods) least I forget. Don't get me started about the toy store! This is amazing to me, he has never wanted anything, it is exciting to see what he likes.

Good for a few laughs!

If anyone is looking for a completely hilarious way to entertain your children go to http://www.memovies.com/

You send them a picture of your child, and they put their heads in the movie. Mr. Chief flies a plane (Daddy would be proud), drives a truck, and dances with a bee. It is so darned funny, I laughed until I cried. The kids loved it too. I plan on getting one for Cotton. It did take about 3 weeks to get the video, but well worth it.... and now back to our program:)

Week Off

Well, we are recovering from our week off. I needed a break, and plus I SOLD MY HOUSE!!!!:) I am a little worried with all the changes that we will be going through. Not as much about Cotton, as me. I need to really stay focused and keep our objectives in mind. Cotton is a little rigid this week, which for him is really odd, but we were barely home last week, and spent the weekend at my in laws. Next week is spring break, and he will have my undivided attention. I always look forward to having him all to myself. He is so much more in tune, when he is not rushed around, and given the proper time to think and respond. So next week, we will be sleeping in, working on stage 3, and having fun.

P.S. There are NO current pictures of Mr. Chief that are not blurry! He is a hard man to keep up with these days!

Stacking

Cotton's favorite new activity is stacking EVERYTHING. A bit annoying, but just one of those things I guess. I just hope we are not expecting an alien invasion or anything. (I think my dad may be to only one to get this joke, but for any one who was a Spielberg fan in the early '80's, well you know what I mean.) Food, blankets, pillows, books, blocks, nothing is sacred it is all neatly stacked.

Fearless leader

OK, this is a shameless brag on myself. Usually when my husband takes off for the desolate wasteland, I am a mess of I can'ts. Even after doing this for the last 7 years each time, I feel woefully inadequate. BUT, this time I am a super woman. I single handidly cleaned out my entire house from top to bottom, re landscaped the yard, put my fence back up when the storm blew it down, put my house on the market, AND did my taxes! Now that Cotton has decided to sleep, I feel like I can do anything. Not to say I don't miss my husband like heck! Life is so much better with a very strong husband to lift all the heavy objects. But, I know he feels better knowing that I am handling everything, and not sobbing on the phone every week. So, this is my brag, go me.

Long lines and little miracles

So there I was, my 3rd trip to Walmart (today) waiting in the forever lines that only exist on the week ends. I was watching all the "other" kids. The typical kids begging for candy, or crying because they did not get something they wanted. Twirling behind their parents, or hanging on the end of buggies. As I headed for the conveyor belt, Cotton looks up at me and pushes me to the side. He starts to unload the grocery cart. The check out girl said "wow, how old is he", "four" I said. "I would fall flat on the floor if my four year old helped me unload the buggy", she said. "He is a very good boy", I said.

So we head home with oh, about 20, 40lbs bags of fill dirt ( I am selling my house, and it is finally warm enough to do some landscaping.) Cotton "helps" me carry the bags to the wagon, where Mr. Chief was waiting for more dirt. We lug the wagon to the back yard together, and spread the dirt. To be perfectly honest Cotton made it through two bags, and went to walk up and down the fence, but hey we had a very busy day.

I guess the point of my rambling, is that today I felt lucky. I was not jealous of the conversations the other people were having with their children. I was proud, and thought wow, I have remarkable kids. Cotton was really helping me this weekend, he is so much more a part of this family. I don't have to manage him any more, he fully participates. He has his moments of course this is a long road, but for the first time in a long time, I feel like I can breathe. Just in time for Mr. Chief to enter the terrible two's:)

Sleep success!

So I am so proud to announce that Cotton has been sleeping through the night! Cotton always falls asleep on the floor, I always thought he just fell asleep playing. Well, before I go to bed, I would pick him up and put him in bed. Well one night, I forgot, and he slept from 7:30pm to 10am! I thought that is weird, and put it to the test the next night, and again he slept in. It has been 3 beautiful weeks with NO 3am wake up calls. I almost feel functional again.

Happy Birthday!

UUGGG, what a birthday! Cotton turned 4, and he and I got the stomach flu. So, well, not the best birthday ever, but.... he turned 4 all the same. Luckily we celebrated 2 weekends ago when the grandparents were up! Over all we have had a wonderful week! Cotton has taken some major steps in stage 3. He is starting to initiate like crazy. He wanted to take turns going down the slide..er... the toddler slide. So, yup you guessed it, I got my happy bum, up that slide, and well got stuck, which was good for uncertainty. It was so easy this week. I did not have to plan one activity! He just kept including me in what he was doing! The good weather has really helped. My little baby is such a big boy!

The Good Night Kiss

Gimmie and Papa (a.k.a grandma, and grandpa) were up for a visit this weekend. We had a great time, and they were so impressed with Cotton's progress, and Mr. Chiefs affinity for mischief.

When it was time for Cotton to turn in, I gave the obligatory command, "say good night to Gimmie and Papa", (something I would not normally do, but I wanted to at least acknowledge them as I put him to bed.) I could not believe my eyes, when he pulled my father down and kissed him on the cheek, and did the same to my mom. I just sat there with my jaw hanging open, I was not aware that he even knew what I was saying, much less initiating a good night kiss. I have to say I was beyond shocked!

That kid continues to surprise me everyday!

Poo Poo in the Potty!

Yeah! What a great day. First exciting news, Cotton pooped on the toilet. So huge for my little guy. He has been peeing on the toilet for about 6 mo. now and tonight voila! He even said "poo poo" (again very exciting!)

Second, I took the boys out for dinner (alone, very brave). So there I was with 3 drinks a stroller, and I needed a high chair. Unsure of what to do next I casually said "here Cotton push this". He grabbed the highchair and rolled it with me to the table! We had a long way to navigate, and he didn't hit one person. Lots of very natural coordination.

OK, so on to what we are doing this week. Well he is very into humming (like many of our kids), so I am humming a tune, and then he copies me. Then we switch, he hums and I copy him. I make sure to highlight the my turn your turn. Also, a great little tip from my consultant. We lay facing each other on the couch (feet to feet). I push his feet back, and then he pushes my feet back. A more advanced version is to "bicycle" your legs together.

The beaver lied!!

Is it me, or is this winter especially ccccold. I am so sick of snow, if I have to shovel the driveway one more time, well... I am going to pout. The kids are going NUTS! We need to be outside, to run, and jump, and roll. We went to Super Target last night just to give them some running room. I know, I know, a good RDI mom would be out there building snow men and snow angels. But did I mention it was cold?:-)

Balancing act!

Geez, my life gets so consumed with therapies and autism I am always looking for ways to balance! Especially when it comes to Mr. Chief. We have our special time just like Cotton and I do. I really try to make it a point, and even though he is probably too young to understand I try to make a big deal of it.

I look forward to the day that Mr. Chief will be an integral part of our RDI program. But for now he just wants to take over. He loves to watch though, and I involve him as much as I can. He wants so much to join in. He is a good little brother. If those two ever stop trying to kill each other, they will probably be the best of friends. (a mother can hope)

Sexy mama!

He He, You RDI moms will really appreciate this. I had an adjuster over to take a look at a small leak in my master bedroom. As he was inspecting the leak, he started acting very odd. He was trying to keep from laughing, and turning very red. I looked around and realized I had the camera set up pointing at the bed, for a bed jumping activity Cotton and I did last night.
I turned ten shades of red. I said "Oh, that is not what it looks like." He was so embarrassed and I was mortified. Now I think I am going to hide while this man fixes the leak. AKGH

In the begining....

I have put off this post for a while. Partly because it is a very difficult time to remember. When Cotton was born, I knew in my gut that something was off. He had a hard time focusing and looking at me. I was scared to death that it was autism. When he was 12mo. I knew something was wrong. No longer able to be in denial, I started the journey to find out what it was.

When we discovered Cotton's albinism at 14mo. I was thrilled! He was visually impaired! That is why he is so delayed. I can handle this... you see in my mind it was far better than autism. So we started EI and the therapist came to my house reassuring me everyday that he was not autistic. One even brought me to the autism classroom and said "see he is not one of these kids" (gasp, I know).

But as time went by and my son continued to fall behind, I knew in my heart that it was more. I pushed and pushed for an evaluation, I got one, and the Doctor said come back in 6mo. We did and he was diagnosed with PDD-NOS, a catch all that in my opinion means your child is autistic and I am breaking the news gently. I thought okay, high functioning autism we can do this. I thought surely he will speak again any day now (he had four words at 13mo.). The last time I heard the word "mama" was on Mother's Day, 2004. I remember thinking "he hasn't said that in a while, so nice to hear." He never said it again.

When I hear someone introduce their ASD child as high functioning, I want to vomit. If there is a HFA, well then that insinuates, that there is a low functioning ASD. I refuse to label Cotton as either, he has skills all over the board. However, indistinguishable he is not. We have tried it all. We had a VBA program 40 hrs a week from 19mo. until 3yrs. We were GFCF/SF/Corn F, among other F's. We have worked everyday of his life to get him to the highest level of "functioning" possible.

I still pray,beg, demand, and throw numerous tantrums, for verbal communication. Cotton did not even start trying to say words until we started RDI, and his non verbal communication, is coming along nicely. I can not imagine never having a conversation with him. I hope, I do not have to.

I got my news letter for the Connection Center discussing previewing ahead. I just can't. I can not imagine a future with no words. It hurts too much to imagine it, or especially to write it down, because what if that year passes, and we still have no words.

So that is a summary of how we learned of Cotton's special needs. I have left a bit out, I am sure I will fill in the gaps in posts to come. So looking ahead to me means 1 day at a time. It is all I really can handle.

Why RDI?

[disclaimer: this is what works for my son, if something else works for yours great!]

After a year and a half of ABA, I looked at my son, at his progress, at the parade of people coming in and out of my house, and said something has GOT to change. After a year and a half of everyone telling me what my son needed, I decided I would be the judge of that. In Feb. of last year we started this journey. After my main in home ABA therapist went to work at Cotton's school, I decided to take a break. That is when I started researching RDI. I looooved the idea of less. I love the idea that I could parent my child again. I was so excited to enter a world, where there were no prompts, and the interactions were real and spontaneous. I could not imagine a world 6 months ago, where my son would voluntarily look at me, much less crane his head around to see our reaction. RDI is about teaching your child how to be participant in a relationships. The very fabric of what it is to lead a fulfilling life. He is growing everyday, and so am I.

School.

School has become a huge obstacle for us. However, it is a necessity right now while my husband is deployed. I do not think I would be the best parent if I was to be on mommy duty 24/7. However, when we move this summer, I am going to try homeschooling. So I am knee deep in homeschooling curriculum. I just have no idea what to do. RDI will be our main focus, but I really want a loose curriculum to follow. It will help me feel more competent. I really like Five in a Row, but I would have to modify it to his needs. His receptive language delay is a tough obstacle. So far it is my favorite, and will be very easy to include Mr. Chief.
So on to what is working this week cont. stage 3 (and holding)!

We stand facing each other and I say lets touch........ ears, and then we touch our ears, nose, bellies etc. together. Cotton loves this game. I always reserve one round for him to decide what we touch. I will say, "lets touch...... hmmmm, I don't know, hmmm..... (I try to keep language to a minimum.)

Songs have been a big hit this week. "The A says.......... and Cotton replies "aaa." Or "the wheels on the bus"'....... he does the hand coordination, and I sing the action.

We have also been dancing to songs this week. Lots of actions and our favorite is jumping in a circle with out holding hands. This requires a lot of coordination.

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.