More Pieces of the Puzzle

Today Little Man's ENT called with the results of his sleep study. Seems we may be getting some answers. Poor little guy wakes up 10 times an HOUR all night long. He has abnormal sleep architecture (not sure if that was due to the frequent waking or if it's in addition to it). I'm not really sure if it's due to apnea or his neurological issues. The nurse did double check that he's had his tonsils out already (he did when he was 3). We'll find out more at his follow up appointment. We're waiting to get Beans' results before we schedule it so if he needs to be seen we can schedule them at the same time. For some reason they haven't received Beans' results yet, but she was calling the sleep lab to follow up on it. Hopefully soon we'll be seeing more of this:
and he'll wake more rested. I guess this explains why he's tired all the time. Hopefully there's something we can do to help him out.

In other news, yesterday was a big day. First the bad, I had to notify the nursing agency that Little Man's night nurse fell asleep on the job yet again. She'd received a final warning in the past (just a few days ago in fact) so she's been relieved of her duties. This leaves us without an overnight nurse. The agency is recruiting another one, but it will probably take time. Meanwhile, I'm very thankful for his evening nurse and that it's between semesters for me so I can have a chance to nap when I can. Which leads me to the other big news of the day. My final grades for fall semester were posted, and I got all A's! I've proven to myself that I CAN handle school and the kids' needs.

I was terrified that when I went back to school one of the kids would get very sick and I'd drop the ball. Well guess what, the kids did get sick and I had to miss a bunch of classes but I was still able to keep it together. I think a lot of the fear came from last time I was going to school. Beans was about a year old. I went back to working full time and going to school full time. Over the course of the year Beans got sicker and sicker. I'm ashamed to say I didn't realize how serious the situation had gotten until I was forced to take time off work and school. Within a few months of me quitting work, we'd found a bunch of his issues and he'd had his reflux surgery and g-tube placed. I guess I've never really forgiven myself for letting things get so bad. He went to all his doctor appointments and everything, but it takes more than a checkup every couple months to truly care for special kids. These A's I made this semester combined with seeing Beans and Little Man thriving mean so much more than a letter grade. This means we're making it! We're making it together and WE CAN DO THIS!

Christmas Recital

Today was Little Man's much-practiced-for guitar recital. He had such a wonderful time. He loves performing, no stage fright for him. :D Music is such a love in his life and he works so hard at it. He played Jingle Bells and Away in a Manger. Jingle Bells he has memorized so he didn't even need his music. Away in a Manger he's worked so hard on for the past few weeks. You can see the concentration on his face as he plays away.
Grandma J and Grandpa R came to watch. Little Man was so happy. Beans even sat quietly for the vast majority of the recital. After Little Man performed, they were both ready to head out, but with some convincing and entertaining we made it until the end. So here, for your viewing pleasure, may I introduce Little Man playing his guitar. :D (Please excuse the shaking and video quality but at least you can hear him playing.)

Little Man is finally feeling a lot better and hasn't needed his albuterol in over twelve hours now. Good thing because his nebulizer (machine to give inhaled meds) died last night and we've had to rely on the inhaler. I'm so glad he'll be able to enjoy all the Christmas festivities at school next week.

Doing a Little Better

Little Man seems to have turned the corner. He's needing his albuterol every 2-4 hours and still sounds congested, but he did drink close to enough today. He's not really eating but that's not a big deal. You can tell like clockwork when the albuterol wears off. He starts coughing like a mad man. His headache is still there but ibuprofen helps that. He keeps getting weird flushing on his face and weird coloring on the rest of his body. Sometimes it looks like red spiderwebs all over his body, other times its red splotches, and other times it's purple lines. They come and go and don't hurt or anything, so I think it's just one of those "Little Man things."

I had to do what I was avoiding all semester today. Little Man accompanied me to my final exam. I set him up right outside the door with the laptop, went in right when the teacher got there, raced through my exam, then ran back out to get him. He was a good little boy. I think he felt bad enough that he didn't think of moving. Thank goodness! I'm now finished for the semester and so far - I know 3 out of 4 classes - I have straight A's!! Woohoo!

Tomorrow Little Man has his guitar recital and then we're planning on going to see Santa in Sopchoppy with Grandma and Grandpa. Next week is very exciting with the last week at school before Christmas. I get to help in Little Man's class on Thursday for their Apple Basket Diner, and Beans has a Christmas party on Friday.

Speaking of Beans, he brought home the most adorable paper. He wrote a Christmas poem:
"I like Christmas,
Dark green tree.
Colored lights,
For all to see!"

This is the first time he's ever done something like this, and I am such a proud Mama!

Little Sicky Man

Poor Little Man is feeling miserable. His teacher called yesterday for me to come pick him up. I got to his school and he was laying on the classroom couch obviously sick. He didn't even look up when I came into the room. I brought him home and he had the most pathetic little voice. Today he woke up with a barking cough and possibly even more pathetic looking. He's got a low grade fever, sore throat, cough, asthma acting up, horrible congestion and a headache. He only drank 8 oz over the course of the day. He did find enough energy to sit and play the computer for a while, but spent most of the day watching Nick Jr.

His evening nurse started today and she watched him while Beans and I ran out to get something he would drink. We got home and I woke Little Man and got a few ounces of Gatorade in him. His new nurse is so good with him. She directed him through all his evening steps with patience and watched him while I helped Beans do his homework without the normal constant interruptions. I even got in some study time for my last final tomorrow.

Tonight he's sleeping on the couch, propped up. He's needing his inhaler/nebulizer every 2 to 4 hours so my alarm is set for 3 am (his nurse is a CNA and not allowed to give meds). Nurse B is watching him closely and will come get me if he gets worse in the night.

Tomorrow I'll have to take him with me to my final. There's no way he can go to school and noone can really watch a sick Little Man. Wish me luck and concentration and please send Little Man all the get well wishes you can spare. He has his Christmas guitar recital on Saturday and has been working so hard for weeks on this. He needs to feel better so he can perform.

Happy Anniversary Beans!!

Today marks an incredibly special day in the life of our Beans - ONE YEAR since being inpatient!!! I can hardly believe it, yet here it is. One year ago today I brought him home from Arnold Palmer Hospital in Orlando. After being fed into his intestines for 4 years, it was time to consider having a seperate j (intestinal) feeding tube placed. To give him one last shot before having another major surgery, his GI admitted him for a week to see if we could get him onto stomach feeds using the feeding tube placement he's had since he was 2.Over the course of a week, Beans went from IV fluids with no feeds, to a very slow drip into his stomach up to 8 oz boluses every 3 hours! What a HUGE quality of life improvement. After years of wearing his pump backpack all the time, he was now free all day only needing to sit to be fed every 3 hours. Wow!!

To think, 18 months ago he had his PICC line for IV antibiotics, had his GJ pulled and an NJ placed because of his tube infections. A summer with that horrible NJ and now...fully g fed, looking good and the best he's ever been. How great is this!

Quick Update

I just wanted to post a quick update on the kiddos. It's a bit of a rough day. Beans threw up last night (which technically shouldn't happen because of his reflux surgery) and then put out 200 ccs of green bile last night. I couldn't send him to school like that so he had to accompany me to my final exam in English and my last nutrition lecture. Thank goodness he sat quietly. I vented him right before each class and he did okay. He did eat some tonight and is hooked up to Pedialyte now. Hoping he goes back to school tomorrow.

On top of that, Little Man's headache reared it's ugly head again tonight. You know it's bad when he turns off the radio in the car and covers his eyes. :( He's finally in bed now, lights off, face flushed and a cool washcloth on his face. I'm going to start trying to get ahold of his neurologist tomorrow. I just hope there's something that can be done to help him. He never complains of pain and this is sending him over the edge. :(

Lessons Learned

Last night both the boys had their sleep studies. I learned a few important lessons:

1. Even if the kids' specialists, nursing agency, home health agency, pediatrician, therapy center and SLEEP LAB are in the same area, do not assume you know where you're going as you're bound to become confused.
2. When you become confused, call for the address BEFORE you've found yourself in the middle of nowhere.
3. Tallahassee is not in GEORGIA, but it's easy to reach Georgia if you're hopelessly lost in the dark in a rainstorm.
4. When you're lost and feel like crying, CRACK JOKES at everything around and make the kids SING horribly off-tune Christmas carols with you.
   
5. Always bring a CHANGE OF CLOTHES for the kids. Pee happens.
6. Don't forget to EAT when you feed your kids dinner.
7. Tallahassee apparently feels the same way I do about 6:00 am. It's best to be SLEEPING.
8. You'll always find HOME eventually, and it's great when you do.
   

So Much to be Thankful For

Yesterday we celebrated the best Thanksgiving at my parents' house. My dad deep fried the turkey, my step-mom had done so incredibly much preparation the day before and tons of work the day of, it was fantastic. Little Man got the normal sequence of events a little backwards, and decided to nap on the couch BEFORE dinner. ;) Silly boy.
Beans took the whole day as his opportunity to be Grandpa's Cling-on. I don't think he was more than a couple feet away from him for most of the day, even had to sit next to him at dinner. I went outside to see him during a break in cooking. I sat down only to be pushed away by a little boy ~ possibly for the first time ever ~ who wanted alone time with his gramps. I made my way back inside, laughing to myself, but made him oblige me with this pic first. ;)Grandma J's new dog Ciri is the funniest thing. She loves wearing her clothes (see her modeling the latest SpongeBob trend below). When she's out on the porch and wants to come in, first you see this little head peering in the back window. When that doesn't get her anywhere she starts leaping. Out of nowhere you see this little dog, down to her little paws, completely off the ground as she jumps at the window. It cracks me up every time.
With that prelude, there is so much for us to be thankful for. Little Man is finally feeling safe and secure, both at home and at school. He knows the thing he's feared for so long cannot touch him now. Both kids are in the perfect classes at school and making progress in leaps and bounds. I'm doing well on track to our road to a better life. Beans has a couple HUGE anniversaries coming up next week that I'll get into then, but for now let's be thankful for the amazing improvement in his health. Last night Little Man had a little too much excitement and could not get to sleep. He wasn't being naughty, just could not sleep for anything. Nights like that make me even more thankful that he has nursing set up. He was able to be watched and stay safe while I was able to get rest to deal with them patiently today. I'm constantly thankful for the help. And don't forget the biggest ones - we have a roof over our heads, food in our tummies, an amazing extended family that loves us and friends who understand us. Yes, there is much to be thankful for. We are so very grateful.

Fair, ER and a Playdate - What a Whirlwind

It's been quite a wonderful few weeks around here. Like always, life has had its bumps in the road, but overall it has been one of those times when you remember just how lucky you really are. November started with the North Florida State Fair (didn't know there was a state of North Florida, but whatever ;) ). I was able to get super discounted tickets that included admission and unlimited rides. We had a great time. First we went to the petting zoo. The kids weren't particularly thrilled with looking at animals with the prospect of rides waiting, but I convinced them we had to at least take a peak. Believe it or not, they loved it. They fed a bunch of animals carrots. They saw goats in shirts and little goats that all wanted the same slice. They saw a camel, a zebra, kangaroos, yaks, zebu, llamas, alpaca and many other four-legged beasts.We left the petting zoo at just the right time to catch the Wild World of Animals show. The kids loved the baby monkey clinging to the trainer. Hysterical laughter followed the 3-year-old monkey as he pounded off the back wall, jumping around like, well, a monkey. They saved the best for last. The trainers put up a second fence then brought out an 18 month old hyena. Wow! I'd never seen a live hyena before ever. It was beautiful, and I couldn't believe how big it was.

After the show the kids could wait no longer. We headed for the rides. Once again I was amazed at the kids' fearlessness. Little Man has always been a little daredevil, but Beans has always been much more reserved. Let's just say he's broken out of his box. We went on a hang-gliding ride, Tilt a Whirl, the Scrambler, Musical Express, twirling rides, roller coasters, you name it. Here they are on a spinning ride that started horizontal then went vertical. Before we left, Little Man had to go on one last amazing ride. He was the tiniest person on there. The ride launched and the whole seating thing went twirling and spinning and whirling up high in the air. Personally, I was just fine with my two feet on the ground, but the fearless one loved it. Beans was too short to go on, I think he secretly was happy to be on the ground with me. :P

Little Man is on the lower right corner of the seats in this pic. He screamed with the best of them and came off with the biggest grin I've ever seen. We had a little trouble making it to the car as full-blown overstimulation had set in by that point and, let's face it, what kid wants to leave all the fun to go home?

We went to the fair on Thursday, the 5th. The night of the 6th, 7th and 8th were very strange. Little Man, who requires multiple medications each night to help him sleep, put himself to bed. Early. Obviously something was wrong. That something presented itself on Sunday as he was finally able to communicate he had a headache. Initially I didn't worry too much about it, and still sent him to school on Monday.

Within two hours of school starting my phone rang. It's never good when caller id shows a call from the school district. It was Little Man's teacher. He was having his first bad behavior day of the entire year, and I needed to come down to the school. By the time I got there, he had calmed down and was able to tell his teacher that he had a horrible headache. And he did mean horrible. He had his head down in his hands and was clawing it. His teacher told me not to punish him - which believe me, was very hard not to do - but to take him to the pediatrician right away.

I called the doctor who told me to take him to UrgentCare. Now if you know anything about Little Man, you know he doesn't hold still for anything. I knew something was really wrong when he laid down on that little table in the exam room and fell asleep for two hours. When he woke he was grabbing his head again. I was tired of waiting at this point, having not even seen the doctor yet, and have to admit I almost politely, made the issue known. The doctor finally came in, examined him and sent us over to the Emergency Room for a CT scan. By this time it had been hours since we arrived at UrgentCare and the prospect of waiting all over again at the ER was bad enough, but an emergent CT scan was enough to make anyone's anxiety level go through the roof.

I have to say though, the scariest part was the headache coming in waves. When it would get worse his face would flush and the rest of his body would mottle, he would lay down in the waiting room and need quiet and not to be touched. Thank goodness to my FB friends who kept checking in on us, helping to pass the time. The hospital finally got him back to a room where he continued wanting the lights out and laying perfectly still. Finally, finally the doctor came in. His CT scan was normal, thank goodness, so that ruled out the "really bad things." They weren't really sure what the cause was, but it was likely a migraine that affected his autonomic nervous system. This is a pic shortly after we got home, his face is flushed, wanting his eyes closed and just laying down again.
Since then he's continued to have frequent headaches, though not to the same extreme. I'm going to need to call his neurologist for some advice. He just can't keep going on like this. :(

We did have another stroke of luck though. The day after the ER visit I left Little Man with my parents while I had to take a test at school. I made it back out to our tiny town, picked him up and had just gotten onto the street when the transmission went out in my car. What's the lucky part? There's so much! It could have happened when we were coming home from the ER, it could have happened on my way to pick him up that day while I was driving for miles without cell reception, there are just so many ways it could have been worse. My dad, stepmom and grandma helped immensely in getting me back my wheels. Thank you!!! You can't even get to the store without a car here so it's incredibly important.

That stressful couple of weeks has been followed with more happiness though. It always happens this way. :D Beans brought home a letter from the county sheriff congratulating him on making Honor Roll!!! Now Honor Roll is always something to be proud of, but this is his first year in full inclusion. He now has no academic accommodations and is doing regular second grade work independently! What an incredibly proud mommy moment!

That brings us to today. The kids had the day off school for Thanksgiving, which means I had the day off school unofficially. ;) We had an amazing playdate with good friends. We went to the park and the kids played for hours. I got to visit with another mom and had a great time myself. It's so nice to go out with people who understand my special kids and it doesn't phase them.

Tonight the kids were totally worn out and went right to sleep. Hopefully for a nice long rest. :) Tomorrow we're going to my parents' house to celebrate Thanksgiving. We have so much to be grateful for, so very, very much. I say goodnight with a pic of my little Beans. Sleeping with his turtle from Aunt A, his chameleon from Ronald McDonald House and his hospital buddy from when he got his PICC line. Buddy is anatomically correct with a scar just like his. What a precious set of boys I have.

Trick or Treat

Halloween started out with a bit of a trick last night. I went to feed the fish, after the kids were in bed, and discovered that several had died. They'd been fine just a couple hours before then all the sudden... There were a few left alive so I decided to try and salvage them. I got them all scooped out into a bowl. I left the bowl on the counter while I cleaned out the fish tank. Apparently it was more than a certain striped feline could resist. Just as I was finishing the tank at the sink I heard *splash* I turned around to see the cat's tail darting behind the wall and the five remaining fish flopping around on the floor. Now I don't know about you, but touching fish is not my favorite thing to do, yet what else could I try? I scooped them back into the bowl, poured water in and hoped they made it through the night. I put them in a cupboard to avoid a third near-death experience in one day.

This morning I got everything set up again and amazingly, all five fish survived the night. Hopefully they'll make it over the next few days/weeks while the tank finishes cycling. Chasing fish is not my favorite activity - especially while they flop around the floor.

The cause of the second fish misadventure of last night, in his Halloween costume

The night went much better. I got Luigi and Star Wars Clone Trooper all dressed up and makeup applied. Little Man was insistent we drive into Tallahassee to Trick or Treat at the mall, so that's what we did. Beans was having a bit of an off day, a little cough, a little tummy trouble, so he wore his pump and we were thankful for his chair. There were several stores giving out candy, but it was enough to make the boys happy. :)


Little Man got a little overstimulated by all the people but he's made so much progress lately. When it got too much for him he shoved his candy bag into my hand and used his words to tell me he'd had it. We were able to find a quiet store to slip into while he calmed down. What an improvement! Instead of ruining the night it was one little blip.

On the drive home we were laughing our butts off. I can't even remember what was so funny but we had the best time cracking each other up. They're now properly sugared, bathed and teeth brushed so I suppose I should get them into bed. Little Man's nurse will be here soon and they're both still up. Happy Halloween!!!

Shower of Happiness

This last week and a half has had day after day of happiness. Sunday, the 11th, we went to my parents' house to celebrate Little Man's birthday. He was very possibly the happiest boy around. Grandma J helped him make gluten/dairy/soy free cupcakes. A great start to the visit for my chef-to-be. Grandma cooked a delicious dinner of salmon, vegis and a fabulous salad. Little Man was spoiled rotten with presents - his cooking set, a puzzle, some nice new clothes (yes, he actually likes new clothes), a Bionicle and his much hoped for RC helicopter. We all had a great time visiting and it really turned his birthday weekend from sad to happy. Thank you Grandma and Grandpa!

This past Saturday, the 17th, Little Man's school had their Fall Festival. He was chosen as his classroom representative for the coronation ceremony at the beginning. It was a very cute ceremony with each class representative's name being read off, them coming up on stage, bowing, receiving a medal recognizing them as the representative, then taking a seat in front of everyone. He did such an excellent job waiting his turn and then sitting quietly on stage while the ceremony finished. They even had little boutonnieres for the boys and bouquets for the girls.

Sunday brought another special day. It was the ceremony and reception for his guitar scholarship. Grandma and Grandpa came to watch Little Man perform and it made it all the more special. He was having a really bad tremor day, and the chair was too high, but he performed well nonetheless - and loved every minute of it! After several performed they had a big ceremony that he again sat quietly through! Then he got to go on stage when his name was called and receive his scholarship certificate. He was quite the proud Little Man.

On the way back to the car I took advantage of the men being dressed up and took this shot of my guys. Aren't they handsome?

And the final bit of good news this week - Little Man's personal care assistant was approved! Monday night the overnight aide started and tonight his evening aide is supposed to start. I got to sleep through the night, in my own bed, twice in a row for the first time in as long as I can remember. My patience level is already so much higher and I feel so great. It's weird getting used to someone being in the house, but I've accepted the fact I need help. I'm thankful for every hour someone can be here.

The Party That Wasn't

We had great plans for this party. Little Man was so excited. His first ever friends birthday party. When we lived in Utah he always had plenty of cousins to come to his party. This year we invited all four kids from his special ed class, hoping that at least one would come. No one RSVP'd, but when I called to RSVP for Beans for a party he was invited to at the same time, the parents were surprised that I'd called. I still hoped for the best.

We had the sign (which yes, will be taken down in a few days because of his name, but I had to share it with you for now at least)...we had the balloons, notice the LegoVille mylar balloon. It was his theme for the party. We had everything - plates, cups, placemats, tablecloth, favor boxes ...
we even had the pinata Little Man had his heart set on, and filled it with a boat load of candy.

The party was supposed to start at 3:00. At 3:30 no one had arrived yet. Little Man was having fun playing in the sand. He climbed on the playground for a while, threw sand on the slide and was rather enjoying himself. He had helped me hang the Happy Birthday sign and we'd set signs out around the park directing his friends to our pavilion.

I finally had to ask the dreaded question, "How long do you want to wait?" He said thirty minutes and I figured that was reasonable. He still wasn't phased that no one was there.

After 25 minutes I told him I needed to take the cake and ice cream to the car and he was okay with that, but when it hit 4:00 and I told him we should probably head home, reality finally set in that no one was coming to his party. :(

There's not much that's more heartbreaking for a mom than this face. :( I can't believe not one kid showed up. He was so excited for this party, he'd been waiting for weeks, his friends had told him they'd be there (although admittedly, no one RSVP'd) and his heart was crushed.

He was such a trooper though. He helped me get everything back to the car. I told him we'd take back the party favors we'd bought for his guests (Lego Racer cars) and buy something nice for him. All sadness was forgotten when he chose a Star Wars Clone Trooper voice-changing helmet.

One great thing about Little Man is he's all about living in the moment. If I brought it up, he'd still be sad, but it's over now and he's gone on with life.

I have to say I have the most amazing family. One little note on facebook, in a reply no less, that no one came to his party and they went into action. First Uncle C called, then Uncle J called, followed by Aunt S and Aunt H. It was so touching to see all my siblings calling my boy to make sure he knew he was loved and had a good birthday after all. Thank you guys! You are wonderful and I love you all!

Cougar of the Week!

Man it's been exciting around here lately! I'm almost afraid to pinch myself for fear I'll wake up from this dreamland of wonderness (like my new word?). Yesterday Beans hopped off the van from school just beaming. He had a paper clutched in his hand, but I couldn't see what it was from the doorway.

He bounced into the house, and I asked him the normal, "How was your day?" The smile erupted as his eyes beamed and he said he got Cougar of the Week! (Student of the Week) He's been hoping and hoping for this award since school started. As part of the award, he got to go on the school TV program that morning, got to choose a friend to eat lunch on stage in the cafeteria (he said he had a hard time choosing - he wanted to choose R and B and E and T, but he could only have one so he chose H - another amazing moment for me, He Has Friends!!!), and then he brought home his Cougar of the Week certificate.

I immediately hung the certificate on our board to honor him. Every time something like this happens - from the "smaller" ones of 100% on a spelling test, a new friend, who he played with at free time, to the bigger ones like Cougar of the Week - I sit back in awe. The little boy who used to hate people, who hid or screamed if they talked to him, who learned so much in preschool with the most amazing teachers ever, who backslid in kindergarten but has gone back to those skills he learned in the autistic school, has now launched. Nothing can stop him now and I sit back and realize how lucky we are.

Little Man's 10th Birthday

He had a great day! He woke in the morning and I let him open his gifts, unsure if it would cause more issues at school making him wait or letting him open them before he went. It turned out to be fine. :) He was so excited, full of big smiles all day.

At 2:00 I came to his classroom with cake. This was the first time I'd seen his class all together because usually I'm in classes when he is. Well it's quite obvious why he's so happy there - it's a class full of Little Man clones. Not in looks, but all five of those boys act the same, react the same and are hyper, rambunctious little cuties. He's among good company there.

Little Man while the class was singing to him

The boys sang him Happy Birthday and then we had cake. Or sort of did. Only two kids would eat it lol, and Little Man was not one of them. He's still getting over his cold so he didn't eat anything really for two days. I'm sure he'll make up for it at his party tomorrow. :)


We came home and Beans gave him his presents, followed by the sweetest birthday hug in the history of brothers. Little Man even let him do it and kind of hugged him back.


The evening was full of birthday wishing phone calls from almost the entire family. Every time the phone rang, someone was calling for him! All of his grandparents called, including those on his dad's side, his cousins called, and his aunts called. He went to bed one happy and content birthday boy. What more could we ask for?

A New Awareness

Little Man hasn't been feeling too well this week. He came home from school Monday with a horrible headache. He's been having bad joint pain as well. Things that would make anyone feel irritable. This afternoon he was miserable and started crying. He told me he was sorry he'd had bad feelings and bad choices this week. First of all, he hasn't been naughty at all. Second, anyone would be irritable if they felt like he does. But thirdly, this is a wonderful new awareness of his own behavior, feelings and choices! He's learning so much more than math and reading in his class, things I'm just amazed at.

On a little sadder note, some things were brought to light in Little Man's therapy recently that have been hard for me to accept. He has been through much more than I had imagined and has a lot to work through. He's been a very scared little boy for a very long time. I hate that someone who was supposed to love and protect him could hurt him so badly. He's making progress but he still has a long road ahead.

Tomorrow, though, is a day of celebration! Little Man will be celebrating his 10th birthday! We ordered the cake this weekend. I'll be picking it up on my way home from classes tomorrow and taking it straight to his class. He's having his first-ever friend's party on Saturday! He's so excited he can barely contain himself. Little Man, I hope you have the happiest, most wonderful day ever. You are such a blessing to me and I love you more than anything.

Before I go, I want to leave you with a couple pics from today. Nothing special, just little bits of happiness. Enjoy!

Busy Week and our First Applicant

Last week had a few bumps in it. Beans had his first sick day of the year - an absolutely amazing fact for a child with an immune deficiency. Think his teacher deserves an award for enforcing handwashing? I sure do. :D Having a bottle of hand sanitizer on your desk is the cool thing to do in his class. I love it. :D

Anyways, Beans sick day happened to fall on the day on my psychology test. You know - the no makeups for any reason test. I had no choice but to pack him along with me. He was so miserable he slept all the way to my school. I put him in his chair and his head hung back over the backrest and he slouched off to the side. I *really* need to get on his home health company about getting him something different. When he's feeling good he doesn't need to be in it at all, but when he's feeling bad this chair doesn't do the job. I had him hooked to his Farrell valve to vent his stomach (his way of throwing up and burping) while his feeding pump slowly pumped Pedialyte. I felt bad for having to drag him along.

I set him in the lobby, covered with a blanket and his backpack nearby in case he felt like playing with his toys, then went in to take my test. I rushed through it to hurry and get back to my little sickie bug. He did fine while I was testing so I decided to push my luck and see if I could make it to my next class - a review for another big test on Friday. No such luck. He was wilting like a flower and wasn't going to last. Before he started having bigger issues I decided to take him home. He again slept all the way home and was puny the rest of the day. (I've since bought him a new, more supportive car seat and he's much safer in the car. I couldn't imagine what would have happened had we been in a wreck when he was like this.)

Thursday he was back to normal so off to school he went. I'm not sure if he was actually sick or if it was just one of those Beans things.

Friday I got the unbelievable news that, for the first time in 10 years (!!), someone got 100% on my psychology professor's test. Yes, it was ME! Way to juggle school and parenting. :D Then I had to go take my sociology test. I was really worried about this one as the questions were worded strangely. No worries though, I found out Sunday that I got an A. :D Yay again!

Saturday was a big day around our house. The first applicant to be Little Man's PCA came over for an interview. Miss B looks like she's going to be a good fit. She has 3 boys of her own and is also in nursing school. She wants the overnight shift. I told her it actually should be pretty easy because when he wakes up she just has to keep him safe. There's no putting him back to bed when he wakes at odd hours so he can just play or whatever and she'll supervise. Her job will mainly be making sure he stays out of things that could hurt him, things he can hurt, and that he doesn't get out of the house. She's ready to start as soon as the authorization has gone through!

The timing couldn't have been better as Saturday, despite his newest increase of sleeping meds, Little Man had another night where he stayed up around the clock. This time though I had hope. Soon someone will be here to sit with him when he does this and I can still get my rest to deal with him and Beans during the day. I can't wait!

You Have GOT To See This!!

Little Man was practicing his guitar tonight and played Jingle Bells all the way through! He did so awesome. He's even reading real music as you'll see at the end (don't mind my Mommy bragging hehe). I'll probably take this video down in a few days since it has his real name in it but we're both so proud, we have to share.

(Sorry it's a little off but I don't have time tonight to mess with it, you can still get the idea though I hope!)

Little Man has his big day coming up next week - he'll be 10 years old! Next Saturday we'll be having his first real friend party. We've got the plates, decorations, and yes, the pinata he had his heart set on - all in his most favorite theme - LEGOVILLE! Everything is guaranteed to arrive tomorrow. Now we cross our fingers and really hope at least one of his four classmates will be able to come. :)

And lastly, the approval for his PCA seems to be coming together. We haven't gotten final authorization yet, but they're sure enough he's going to get it that they've started looking for staff to fill the shifts. Hopefully soon I'll be back sleeping in my bed in my bedroom, rather than on the living room floor so he'll have to climb over me to get into trouble. What a luxury that will be!

ENT Appointments All Around

Friday the boys both had ENT apppointments. They've both had their tonsils and adenoids out but have started having issues with snoring at night again, especially Little Man. He could bring the house down lol. I was a little concerned about this appointment as they had to see a general ENT, not a pediatric one which I highly prefer. Adults just don't have the issues Beans has to be honest. After waiting 45 minutes past the appointment time in the waiting room, with Beans sleeping in my arms (very unusual, and 50 pounds gets heavy!), they called back Beans. I told the nurse that she should have Little Man's paperwork too. No, she said. They're going to put him in a different room. Um, what!?! You're going to put a nine year old in a room by himself? Especially an autistic one? While I was tempted to let Little Man see how quickly he could dissemble the room so they could see why this was a horrible idea, I told them bluntly that wouldn't work, they both had to be together. Never had this issue before at any specialist we've ever been to.

Anyways, neither has an obvious anatomical reason for the snoring. Beans has a stub of scar tissue on one side, but not big enough to cause issues. He's ordered sleep studies to check for sleep apnea in both of them. If they come back normal, no big deal, they're just noisy sleepers. If there's apnea we'll go from there. He mentioned possibly being able to do both the same night. I'm hoping as it will make it easier for me, and I won't have to find someone to watch alternating boys on two nights. They said it'll take a month to six weeks to get the appointment then another month to six weeks for results. That's okay, we can handle another wait. :)

Disability doesn't mean excuse

Little Man has been in guitar lessons for a while now. A few weeks ago he had to change to a different teacher in the same school due to scheduling difficulties with his previous one. Silly me had assumed that the head of the music school had explained to the new teacher about his difficulties, as she had the old one.

After slow progress the last couple weeks I worked hard with him this week and realized he was having one heck of a time following where he was on the page. Some of his numerous challenges include visual-spatial perception (where something is in relation to something else - things like tracking words across a page and orienting his writing on a line are extremely difficult), dyslexia, motor planning (making his brain get organized to tell his muscles what to do and then making his muscles follow through) and processing issues.

When we met his teacher for his lesson today I told her that he'd been working hard and that we'd found some things to help him. Things the occupational therapist recommends. I told her we cover up everything but the song he's working on at that moment and point to the note he's on as he plays it. I explained he has dyslexia (the thing people are most likely to be able to understand) and these things work best. She basically pooh-poohed my suggestions saying she doesn't like the kids to get used to that.

Amazing thing though, when she walked him out of his lesson she told me how much better he did when she pointed to the note. Imagine that - you work with the disability instead of trying to make a child fight it on his own and wonderful things happen. Just because things need to be done differently for some people doesn't mean they're being lazy or not trying. Our little ones who were created from a different mold just may be the ones who teach the world as they grow.

Happy Weekend! (and some cute pics)

Yesterday Little Man had his psychiatry appointment so I decided to make the whole day a Mom & Little Man date. We started off seeing his psychiatrist and he had his best psych appointment that I can remember. He's doing so well. The only blemish was he's now officially labeled "moderate- functioning autistic" rather than high-functioning. What is the difference? Well, it varies depending who you talk to but basically he needs a lot more support in daily life, and especially school, than most "high-functioning" kids would. His social skills, language and living skills are significantly delayed from his peers. This was all things I know, but of course you don't like hearing the prognosis isn't quite as rosy. We can handle this though. He is who he is and a label doesn't change that. We were able to stop his Depakote after a 9 month taper and she increased one of his meds to try and help the sleeping issue. Last night it worked! We have been able to determine positively now that his tremors don't have anything to do with his medications, they're purely neurological.

After the appointment we had to go get his lab work done for genetics. He thought peeing in a cup was great, as always. Boys! He got scared for the bloodwork but was a tough little guy. He didn't cry until we were down the hall and then he had a meltdown but who can blame him? We had to wait 30-45 minutes after we arrived for them to try and find the right codes and handling procedures for the specific labs. That's a lot of time for anxiety to build in a kid.

I took him to get some lunch after and then he was begging to go to the arcade at the bowling alley they went to with Special Olympics. A mere $10 was a ton of fun. It only took like 20 minutes to spend that but he danced, he hunted and then we played a racing game together twice. He was all smiles afterward.


This morning I went outside to start some laundry and Beans followed me out. He asked if he could sweep the back patio. After picking my jaw up off the ground I agreed. He was so proud of himself. This boy sure is growing up.

After he swept, he was rewarded by his favorite visitors. First, one of the baby toads we watched from newly hatched tadpoles came visiting. We've seen a bunch of these little guys all over the yard. They're still so tiny but with as many as we've seen, they much be doing well.

After I made him put the toad back, both a larger toad and some kind of frog came visiting. I have to admit it was neat to see the two at the same time and see the differences in them. An anole lizard also paid Beans a visit. See what you get for helping out?

We've made progress in getting the personal care assistant for Little Man. The medical director of CMS, where he had his psychiatry appointment yesterday, was willing to do his physical and sign the order. The manager at the nursing agency may need to get a few more records from his doctors and/or school, but once he has everything he said he can get things approved in 3 days most of the time. I'm still living in the land of it-must-be-too-good-to-be-true so I'm not getting too hopeful until it's actually been approved but I am much relieved that there's at least a chance at help, and soon.

Now I have to start thinking about how weird it will be to have someone in my house everyday to help care for Little Man. Very strange idea when you're used to do everything, all the time, period. I think every one of us will benefit if it does work out though. :)

Wonderful Evening

Today Little Man's class had the much anticipated open house. I have to say, yet again, how much I love his teacher. She gets Little Man, and all five of the boys in her class, unlike anyone ever has. As a minor example, the meeting tonight was supposed to start at 7:00. We start the ever-so-precious bedtime routine at 7:00 and messing with that is likely to mean the whole night's a bust. This was important though and I was willing to have a sleepless night to do this for Little Man. This morning his teacher called. She said that she understood that 7:00 would mess with bedtime routines (now mind you, I didn't say a word, this was all her own understanding) and if we'd like to come at 5:00 instead it would be great. Once I'd recovered enough to speak, I thanked her profusely and told her we'd see her at five.

Little Man was so excited. He insisted he needed to wear his black dress shirt and tie. Nothing else would work. He even managed to withstand the horror of wearing black socks (Don't ask, personally I think they feel the same but he will not wear them. Period.) to look his best. We arrived to a spread of sandwiches and chips, but he was too excited to show me things to eat just yet. First he showed me his Postcard Geography book and how hard he worked to write the names of the continents. Next he showed me his AR points. You could have knocked me over with a feather - Little Man has 6.7 points already this quarter! You see, in quarters one through three last year, he may have earned 6 points. He just reached halfway in the first quarter and he has 6.7. I got to tell him again how proud of him I am.

Just then his best friend walked in. Did you see what I said? BEST FRIEND! Does he look happy or what? When Best Friend arrived, it was so nice to talk with other parents who understand. Our kids aren't bad, they have different neurological systems and a lot more to deal with than your average kid. Sure, there are times we don't know how we'll make it through the next hour, but there are times we can't stop smiling too. Best Friend's parents, teacher, and I all talked for quite a while and it was a precious time. Teacher calls these kids hers and her love and understanding for them is so deep it just emanates from her. Every day I'm thankful for her and the work she does.

Lastly, I have to share the letter I told you about that Little Man gave me before my big tests.

"Good Be Lucky"

And just so you know, it worked perfectly! I aced both my psychology and nutrition tests and got my English essay turned in today. Thank you Little Man! Good Be Lucky to all of you too. :)

Little Man Made My Day!

Have I ever told you that I have the sweetest 9 year old ever? This morning before he climbed on the bus he stopped and gave me a hug! I can count on one hand the number of times this has happened unprompted. Sure, maybe it's part of the routine since I always ask him for a hug before he goes but this was of his own initiation. Melts this Mommy's heart. As part of the autism he's not big on being touched and rarely initiates physical contact so this was so great.

AND...as if that wasn't enough...I spent all weekend studying for a big psychology test on Monday. On Sunday night he hands me an envelope and tells me to open it when I get to my test. I get to school and open it and there's a note that says "good be lucky". Again, melted my heart. He is just such a bright light in my life.

The boys both brought home their midterm report cards yesterday. Beans did incredibly well! One B and the rest A's with multiple 100's! Wow! See my little sponge soaking up this knowledge? Little Man has been working very hard as well and I am so proud of him. He's made a ton of progress especially socially in these few short weeks. Plenty of sunshine going around here. :)

Perspective

Having two special needs kids has of course had a profound approach on my perspective about life. It has completely altered my viewpoint on just about everything. One of the biggest things I've had to come to grips with is the 'd' word - disability - and what it truly means in our lives. Learning has always come extremely easily to me and I always believed that if you just worked hard enough you could attain anything. In my prior mind, disability just meant you had to work a little harder. Looking back now, that really doesn't make much sense. Would you tell a paraplegic he could walk if he just tried harder? Would you tell a blind person they could see if they just tried harder? While I understood those physical disabilities I thought completely differently about cognitive and emotional disabilities.

This past year has brought about a very distinct change in my perspective. While getting diagnosis after diagnosis on Little Man has been unbelievably hard, it has also precipitated a change in me that I believe is helping him vastly more than my "just keep trying and you'll get it" mindset. Not that I've given up hope, no I'll never do that. Amazing things can and do happen and there's still a part of me that hopes if we keep trying then he'll overcome these struggles. But now instead of being so focused on the cure I'm learning to be thrilled with all the smaller steps that many take for granted.

Having a special needs child has a bucket load of extra heartaches and frustrations but it also has a truckload of extra joy. Little Man having a friend, planning a birthday party, him telling me "oops sorry, I was in your personal space," Beans coming home with a twinkle in his eye and telling me who sat by him at lunch, Little Man feeling a sense of pride and success when he completes his work for the day. These are all things that just thrill me. Seeing them overcome challenges is the most exciting thing in the world.

Every parent gets excited at the big "firsts" - first steps, first words, first smile. As a special needs parent you get so many more "firsts" to be excited about. Maybe the finish line has changed, maybe Little Man will graduate with an alternate diploma, maybe he'll be in special classes his whole school career and need support at a job. I have learned to accept what is and how hard he tries everyday. He is a wonderful boy and works harder to get through each day than many of us and he doesn't let it get him down. If he can do that then surely, as his parent and strongest supporter, so can I.

I Get to Plan a Real Birthday Party!!!

Little Man has a birthday coming up on October 8th. We've celebrated every year of course but he's never had a friend party cause he just wasn't really aware enough to make it worth it...oh yeah and only has had like one friend in his life. :( Well this year is different. He is so excited! I asked him if he wanted me to bring cake to his class and we could celebrate there for his friends party. Oh yes! Bring the cake and celebrate but he wants a REAL friends party! I asked him what he wanted and he has his heart set on a party at the park with a pinata. He wants his friends from school (there's 4 others in his class) and the kids next door that he's played with all summer to come. I'm so excited!

Now I need to pull details together. What do you do with 9 kids (provided everyone comes) at the park? Little Man is turning 10 and his classmates are about the same age. All of them are autistic and have the accompanying developmental delays. The next door neighbors are neurotypical and 9, 10 and 12 or so but they are great and patient with Little Man. Beans of course is 8 and will be there but the focus will be on Little Man. I hope at least a couple of his friends show up. He'll be so devestated if they don't.

I need to find a theme for him and then I'll be on the prowl for plates and napkins, cake, party favors and his much anticipated pinata! I can't forget the snacks and balloons! Oh this is so great!

He has several things he wants for his birthday too! He's usually hard to buy for but he's been asking for things on commercials. His biggest request right now is another remote control helicopter. He loves them so much but they're quite fragile so only last a few months. Transformers and some sort of castle building set (Trio?) is on his list too. The trick is finding things he wants that he can actually do. Oh this is going to be fun! I love it!!

An Emergence into Normalcy

I have to share with you what a wonderful experience this has been watching Beans emerge from an extremely shy, withdrawn preschooler to a kindergartener who would rather hide under his desk than sit with the other kids to a first grader in special ed who was trying to grasp the beginnings of academics but was so sick he missed the majority of school to a second grader in a self-contained class for a combination of reasons - Asperger's, immune, and tube feeding among some of them - who failed miserably when we did a trial run in the inclusion class to this year. As a repeat second grader I have to agree with Beans' statement that he is a "real" boy. Not that he wasn't before of course but now he's just .... normal. And what a fabulous place normal is!

Academically, my little star is starting to shine. Most of his grades are in the 90% - a great indicator that he's grasping the lessons but not so perfect that I question if retaining him was the right idea. It definitely was. Math is his brightest area and reading/writing take a lot more work. BUT he is catching on and catching on fast. He has gotten 100% on every spelling test so far. Words that are rather complex for him at the beginning of the week but by the time Friday rolls around he's got them.

The thing that is most apparent though is Beans' social development. I was almost in tears on the way to school this morning thinking about it. He comes home from school, hops out of the van, races to the door to give me a hug. Then I hear about his day...and contrary to what he's relayed in the past it isn't the more bland routine I hear about. Yesterday afternoon the conversation went like this:

Beans: "Mom, did you know I have a new girlfriend?"
Me: "Oh really? What's her name?"
Beans: "You have to guess."
Me: "Is it M?"
Beans (with a twinkle in his eye): "No, but she is ticklish."
Me: "Who is it then?"
Beans (with his impish grin): "It's E! She's ticklish too but not on her neck."

Okay, okay so tickling the girls isn't the most appropriate social behavior in second grade but I do think it's a pretty normal one. His teacher is so great at reminding him we don't tickle in class. LOL.

A couple days ago he came home and told me, with a very serious face, that two boys cheated. "Oh dear, why would they do that?" I asked. He got a mischievous impish grin and said they pretended to fight so they could make up and get points for it. He obviously knew it was wrong but was testing the waters. This exploration is such a wonderful, new world for me as a mom. I'm absolutely loving it.

Too Good To Be True?

I just got home from meeting with the account manager at the nursing agency Little Mans' CMS nurse referred me to. I went in thinking what the heck, it was worth a shot but not expecting much. Let's just say the meeting had me in tears. Tears of relief.

Apparently there is a program for special needs kids in this state that amazingly has not overreached it's funding. There were changes during the legislative session this year that may help me so drastically it will be truly a life changing help.

If things work out, which the account manager and nursing consultant who processes the claims and paperwork think they will, Little Man will have a Personal Care Assistant for a few hours each evening. Someone who can provide constant supervision, someone to help him with his daily needs - bathing, tooth brushing, toileting - and to keep him safe. Someone who will allow me a chance to do homework, housework, help Beans with his homework, cook dinner and all those millions of things you take for granted until you have a child who requires such intense constant supervision.

AND, more than I could have imagined. They provide an 8 hours rest/sleep period for sole caregivers. This means someone will be here overnight to ensure that when he wakes he doesn't get into trouble, isn't destructive, doesn't get hurt and doesn't get out of the house! OMG I don't even know how to turn myself off of this constant on guard state I live in. To be able to actually relax knowing that he is safe, wow.

I know to most that sounds like such a luxury - having someone get up in the night with your kid instead of you - but when it's all you all the time, your children demand such intense energy and time and they get up frequently me being able to get real sleep would be a huge quality of life improvement.

It hasn't been approved yet and I hesitate to get too excited before I know for sure but the people I met with today seemed pretty confident it will be approved. This assistance could start in as little as a couple weeks depending on how quickly I can get the kids physicals done with their pediatrician. Please cross your fingers with me that I can get this help. I love these boys immensely and I'm stretched way to thin.

Finding Resources

Well we made it through the weekend. It was probably our hardest weekend in a long time but we made it all in one piece...or as close as possible. ;) I was so happy to go to school today and immerse myself in my classes in the land where autism and tube feedings don't exist.

When I got home it was time to get working on a plan. I contacted our local CARD office (autism center) and requested their help. She is requesting that I set up a team meeting with Little Man's teacher, the CARD liaison and me. We'll go over behavior plans and resources and see what we can come up with as far as handling his behaviors and issues with unstructured time.

Then I contacted a nursing service the kids' CMS nurse referred me to. Mainly I was hoping to find someone who can administer Beans' feedings when I'm not around as no day care center or after school program is willing to take on that liability. While on the phone I asked if they did any sort of personal care support for autistic kids and what do you know - they do! I'm meeting with the intake specialist tomorrow to begin the process. There are a lot of hoops to jump through but the nursing service gathers all the information and then will petition insurance to cover it. Cross your fingers here!

Lastly I contacted the local Association for Disabled Persons about their Medicaid waiver program. There is a long, long wait list (5 years) but if - and it's a big if - Little Man is approved it will open a whole range of services available to him. Respite care, incontinence supply coverage, personal care assistance, behavior specialists, and life skill support among other things. They do not provide services for people with autism spectrum disorders, they have to have a diagnosis of specifically autistic disorder which I'm fairly certain he does. They'll be sending me the intake packet then we'll have an interview and hopefully, hopefully at least Little Man will be approved. This will make an incredible difference in what is available for lifetime support and independent living for him.

All of these take time to process so I'm hanging on by a thread but as long as noone comes along to snip it we'll make it. I may not be sane at the end but I wasn't sane when I started either. ;P

Desperate - How Do People Do This?

Today was one of those days that really make me question everything. It was a terrible day with Little Man. I really don't know what to do. He's not being aggressive thank goodness but I really don't know if I can handle this any more. I know I'm short tempered because of this cold but I am really at the end of my rope. I can't stress how desperate I am for help right now, something, anything.

Today he used up an entire roll of dental floss tying the house up, broke a keepsake of mine that is irreplaceable, hid my credit card so he could get a new toy (I don't think he was able to use it but he tried online), almost ruined my laptop by being too rough with it, smashed his head into the couch and bruised his face just by playing too rough and out of control, completely trashed the kitchen spreading shredded cheese everywhere - and I do mean everywhere - when trying to get a snack. He's so destructive, I cannot handle this. And I don't mean oh this is hard, I mean I am desperate.

He'll be 10 in a month and he's still like a toddler in so many ways. I just cannot be with him every moment and he's obviously too big to stick in a pack n play or something when I can't be with him. He doesn't have any concept of respect of other people or their things, he doesn't mean to be bad but he's constantly destroying or taking things. Punishment makes no difference whatsoever. Therapy hasn't made one bit of difference in all the years he's been in it. I think it's rather pointless to be honest. If he can't generalize real life practice, how is he suppose to generalize conversations to a real life situation? He can parrot everything back but none of it actually sinks in.

Tomorrow I'm going to Walmart and buying a lock with a combination and put everything I can think of that he destroys in our coat closet. All school supplies, Blade's tube supplies (he's obsessed with water and loves to run water through the feeding bags or rip the tubing off and run water thru them), and everything else I can think of.

How am I supposed to handle this? How do you teach a child not to do these things when he doesn't understand? Obviously I've tried telling him why not to, showing him alternatives, punishing him but it does no good. Not even momentarily. I really don't know what to do or how to keep him safe. Surely I can't be the only person who's dealt with this. I hesitate to even admit this but today some really scary thoughts passed through my mind of how in the world can I keep him at home when I can't keep him safe? He's getting bigger and can carry out much more complicated ideas but puts himself in danger if not constantly watched. I really don't know what to do and no one has answers. How do people really live like this and keep their child safe?