Friday, January 27, 2012

School update

I hesitated to post until now so I didn't jinx anything but....Asa made it a whole week at his new school! Not only did he make it, he LOVED it! He went in class everyday with no problems. His lunch box was empty every afternoon. He went on the accessible playground. He had circle time with his friends. He had a great time!

And he did all of this without getting sick! Well, at least not at school. He still got sick at home a few times. I do think it's decreased since we added an extra dose of Prevacid. He had a nurse in the room 2 or 3 days but didn't need her.

Asa has 2 of the same therapist that he's had the last 2 years. And the nurse was the one from his first class. I'm glad these ladies are watching after him. I thought he liked school but they could verify that he really was loving it.

And I'm thankful for the new friends at school. Plenty of teachers and kids are quick to say "Hi, Asa" as we walk down the hall. Today several kids commented on his wheelchair. They had been studying transportation and a wheelchair was in one of the books. One of the kids said "he's such a cute baby" and the teacher told them that he isn't a baby but his muscles just won't let him walk like them so he uses the wheelchair as transportation. I just thought this whole exchange was pretty sweet. Asa just sat and watched the kids as they used him as a lesson plan.

Oh and just in case you think Asa doesn't understand because he doesn't talk, let me tell you this... He has been hanging his feet off the side of the foot plate on the wheelchair. He isn't dragging on anything but it makes him slouch down. So I was pushing him down the hall and said "Asa put your feet back on your foot rest". And he did it! I admit, I was impressed! Who knew he could get such a sentence. If I'd been trying to get him to follow directions I would have said "asa pick your feet up". That he can follow, but I used way more words than that and he still got it!! Such a smart boy! I know so many good things are in store for him!

Sunday, January 22, 2012

Weekend update!

On Friday, Asa and I visited his new class at his new school. I don't think I told y'all about his class. There was a few choices of teachers. I looked at 2 classes and then the principal mentioned a third teacher. Her name is Birdie. This rang a bell with me. I think I blogged about it before but I can't find it now. Anyway, many many moons ago I was in line to checkout somewhere. I'd guess Walmart since that's where I spend 90% of my free time. The lady behind me asked about Asa and his special needs. Turns out she was a special Ed teacher at the school he will be at now! I had forgotten all about it until I heard her name again. We walked down to the room and guess what she had....a huge cardboard box playhouse! Right up Asa's alley! So Asa and I hung out in Mrs Birdie's room Friday afternoon. I answered questions and the nurse from the Asa's first class stopped by to train the new teachers on draining the feeding tube. We kinda hoped he'd get upset and need draining so we could show them in real time! Instead Asa did great! He loves the room and the new toys. He even sat beside one boy and rubbed his head! The other boys were so sweet too. Very calm and well behaved. I hope Asa picks up this behavior! And listen to how great these nurses are...even though Asa really doesn't qualify for nursing they are supposed to go tomorrow and be back up if his new teachers need it. We only stayed 2 hours Friday and he'll be there 3 hours from now on so hopefully he can make it! Here's a few pics I snapped.

After school we kidnapped Anna's boyfriend, with his parents permission, and surprised Anna with a birthday trip ice skating! We had fun but it's hard! Lol!

Gracie and I were trying to show how tired we were after 2 hours!

And this was what Gracie and I saw Saturday morning when we heard noises in Asa's room and went in to get him out of bed! With the light off it was dark in his room but we flipped the light switch and saw that Asa had gotten out of bed and cruised to the end where his toy shelf is! He was standing so tall and rocking the shelves.....time to tie those down! Gracie I were both surprised and we ran off in opposite directions to grab cameras! he was happy to pose for pics! He's gotten out of bed before but mostly just to slide to the floor. He has never roamed around before. He's never even cruised this far on anything!

We are looking forward to a new week full of firsts!

Thursday, January 19, 2012

Assistive Technology

Asa had his appointment with RJ Cooper today. He did his Asa usual. He did really well but then lost it a little but not too badly. I just thought we were going to see some equipment but the little chat at the end was right on! And I think RJ might could fix those fits if he was in charge for a minute! What a patient, observant man! I saw him work with several kids with varying needs and he just reacted to each ones needs seamlessly! Pretty cool since he only met them as they came into the room with just a little written background.

It's a 12 minute video so you casual observers may not want to watch. We missed a few minutes at the beginning. Asa had an iPad with 4 choices...tissue, music, book or tickle. Asa choose tissue which was supposed to be a non desirable object. Asa likes tissues though so he didn't mind his choice. Eventually RJ helped him choose music and he did a little dance with him. This kinda pushed asa over a very fine line. RJ worked thru it and asa made some more choices but never really got comfortable. He did well though! The finally directions were if we did these choices for 10 minutes, twice a week we'd see a different kid in 30 days! His program cost $30 so I haven't jumped on it just yet. and after I take Asa out if his chair his bottled up energy comes blasting out! I have no idea where all that jumping came from!

Anyway, watch at your own risk! :)

Wednesday, January 18, 2012

Emotional Day

This was an emotional day for me. First of all I dropped Asa off at his last day at his old school and with his very first public school teachers. When Asa turned 3 and I was so nervous about leaving him with someone these ladies were the perfect fit! The class was small, they gave him all the time and attention he needed to adjust and grow, and I really couldn't have asked for a better fit! I'm excited for Asa's growth and development but I'm so sad to see this season pass!

After I dropped Asa off I headed to another school to watch a special presentation by Assistive Technology developer, RJ Cooper. He has developed apps, programs, switches, buttons, keyboards, etc that open up technology and communication to kids and adults with all kinds of disabilities. I really thought it would be kinda dry since most techy stuff is above my head! But it was amazing!! Truly amazing! Mr. Cooper was so good with the kids. He was so funny and personable.

He worked with one boy who could only use his foot to tap a button but that was all he needed to give Mr. Cooper a buzz from a connected massage toy. The little boy just lit up when he realized his foot button had made this silly grown man jump and hop around!

Then he used a head switch with a little girl diagnosed with Rhett's. One of her choices was "music" and he asked her therapist what kind of music she preferred...rap, hip hop, rock, heavy metal. The therapist replied just kiddie music and Mr. Cooper said that wouldn't do! She was 12 and she needed teenage options! He picked Hammertime! It only took once or twice before the little girl realized she could play the music by moving her head and she gave that button a workout! Again, she liked watching Mr. Cooper dance!

He used a 2 choice touch screen program for a girl with autism. She could request "goldfish" or "make friends". The "make friends" option was a big deal for her and just watching him introduce her to new people was eye opening. I learned a lot today. He said to be specific when cheering these guys on. Don't just say "good job" add why your proud...."good job by choosing to make friends". He also said that although this technology is great it isn't a baby sitter. You can't just sit a kid in front of an iPad and expect them to understand how to get their thoughts out! It's still work! Greeeaaatt!

I'm excited because tomorrow Asa will get to work with Mr. Cooper! I'm glad I went today to observe because there was tons of cheering and that's not how Asa rolls! I've realized asa is very intune to our facial expressions and tone of our voices. A huge grin and soft "great job" work just as well as cheering for a reward. A frowning face and low voice upsets him as much as yelling does. This makes it very hard to get onto the other kids!!! But that's another blog post! Tomorrow should be fun!

Oh and there's some YouTube videos by RJ Cooper if you want to check them out! Maybe I'll have one of Asa tomorrow night. Or I'll be too busy playing mom to video!

Friday, January 13, 2012

What is valuable?

I've read a very heartbreaking blog today. It's made it's way around the Facebook pages of my friends with special needs kids. If you don't want to take the time to read it right now I'll give you a brief rundown.

--The parents of a child named Amelia, who has a rare genetic condition and was in liver failure, had a meeting with her doctor and a social worker to discuss the options for a liver transplant. The family had already decided they'd all be tested and since it was a large family, one of them would donate. But that was not an option listed on the forms presented to these parents. The highlighted portions said "mentally retarded" and "brain damage". In shock, the mom asked if she was understanding correctly. Was the doctor saying little Amelia could not get a transplant because her condition has caused "mental retardation"? He said "yes"! It gets even more outrageous and I hope you will read the post. This could certainly hit close to home for many but in all honesty we are ALL in danger of this kind of discrimination. Any of us could be a single car accident from "brain damage".

If you read the blog are outraged you can sign a petition at If nothing else, share Amelia's story.

But about the time I begin to wonder if we are really the type of society that even in a profession that is sworn to "do no harm", we can so easily write off the value of a human life, I find this link on Facebook that makes me tear easy feat! It's an article about Tim Tebow. Surely you've heard of him. If you don't know him from football you've likely heard how is faith in God is getting him tons of attention....both good and bad. I didn't really buy into the whole Tebow praise until recently. I thought he was a faze and would fade he was a Gator! The more I hear about his history though, I'm pretty certain that his faith will still be strong even after football fades away!

If only our world was full of people who saw value in ALL people!! I want to be that kind of person. I also don't have the time and space in my life for those who can't see that value.

Thursday, January 12, 2012

We did it!

Before I get to my meeting with Asa's school I've got to tell you about an amazing thing that happened this afternoon. Many of you will see no significance in my story but many of you will!

I'm pretty sure that I haven't used a public bathroom since Asa's been born if I've been out alone with him. I've tried a few times but the flushing terrified him. More importantly, there just isn't an easy way to do it. I can't hold him, I can't sit him on the floor and most stalls aren't big enough for a stroller/wheelchair/buggy.

Today though, before we changed at aqua therapy, we went into the large family bathroom. I stood Asa against the wall near the door where he stayed while I did what you do in there! He has the ability to stand there propped but not the confidence to shuffle down the wall to get into something! It was perfect! I did think he was gonna take his first steps when I started rolling out the TP! That really cracked him up and he wanted to play so badly!

Ok now if you are done hooting and hollering with me about the potty I'll tell you about the meeting today. I think it went really well! Asa's teacher, OT, PT and SLP were there to speak up for him. We reviewed his history and his present skills and the need to challenge him more. We ended with the plan for me to visit tomorrow afternoon and see the 2 classes that seem like the most likely placement. I'm so thankful that Asa's OT and PT go to both schools so they can give the most accurate info. Asa will visit therevwith me on next Friday and then he'll start full force on the next Monday, January 23.

The class will have 4 other kids. They will go the lunchroom, art, music, plus his therapies. I have some reservations about such a busy schedule for the little guy but I think after some adjustment he'll love it! I just hope the teachers are ready for him! He is used to giving the schedule for the day not following someone else's!

I'd really like him to go ahead and start next week but they are out Monday for MLK, Jr day. Then Wednesday and Thursday there is a big conference with Assistive Technology. RJ Cooper will be seeing several kids from the area to show off some great special Ed tools! On Thursday afternoon Asa is going to be one of his students. I'm pretty excited and I hope Asa behaves himself! A couple of times he's really preformed for crowds but just as many times he's had meltdowns. I guess we'll find out next Thursday!

Thanks for all the prayers for today's meeting. I had such peace going in there! And I have a lot of excitement for his next big step!

Monday, January 9, 2012

Same ole same ole

I hate to not blog but everyday is about the same here. Not that I'm complaining!

I wouldn't mind if Asa's GI issues took a break though. We spend almost every afternoon with him very sick and miserable until he pukes or we drain his belly. We've used Farrell Valves but if he eats solids the stomach contents clog the narrow tubing. I emailed Vandy and asked for urine drain bags on the recommendation of several friends. Instead of calling them in they want to look at why he gets sick. Greeeaaat! I wish they could figure it out but so far I've been describing the same issue for 3 years and I get zero answers! Anyway we are going to add an afternoon dose of Prevacid. Do I sound skeptical?! I didn't have to drain him this afternoon.....I did it before 10am! Not a great way to start his day.

He has also lost some of his gross motor surge. He won't get out of bed in mornings on his own or walk very much. At school they said he wouldnt even walk today in the gait trainer. I try not to get my hopes up when he does a new skill because then I get all disappointed when he stops.

This was after school today. I love his recliner so he can nap in it instead of on me!

I love how he props his head up on his hands. He's been doing it a lot lately. I hate that he still has a paci but if he doesn't have one then his hands are in his mouth. It's pretty gross to think about the germs he's taking in or the drool running down his arms. So the paci is the lesser of the evils!

I'd appreciate your thoughts and prayers on Thursday morning. I have a meeting at Asa's school to talk about moving him to another class. I love his class, school, teachers and therapist so much but he doesn't have any peers to challenge him. He mostly sets the pace of the class and he can benefit from a more structured class where he learns the rules and doesn't set them! In my mommy heart though, I just want him to stay where he is and be coddled and loved on! I just have to keep in mind that I want him to grow and learn and thrive. I just hope I can be a good advocate and get all his needs met at the same time I push him to grow. I hate to start a whole new routine over. I'm concerned about germs from other kids. Will he be able to keep a paci or will he be gumming toys other kids gum on? Will he be able to have a calmer, quieter class that won't stress and startle him? Will I be able to pick him up at 2 instead of 3 like I do now? Will his room be too warm? Can he keep a drink with him? Will someone feed him since he can't feed himself? Oh see there I go worrying again! See I need prayers for Thursday! Thanks!