Ask Hard Questions & You Get Hard Answers

To say Little Man has been struggling at school is an understatement. :( While his behavior has been up and down, his academics are still waiting for an upswing. F after F after F keep coming home. No matter how hard he tries, the result is the same. I've spent a lot of time working with him at home and he's just not grasping things. But then he's missing out on the fun things at school because he's not able to get his work done. Something has to change.

Today I spent an hour on the phone with the education advocate discussing just what that change needs to be. I've given her copies of his IEP from last year, from the year before, copies of his psychoacademic testing (cognitive and academic), samples of his work and reports from the school. It was time to ask the hard question - will he ever catch up? Are we doing the best thing for him by pushing so hard?

I knew in my heart what the answer would be. If from the age of 3 1/2 to the age of 9 1/2 he only gained 18 months of receptive language (from 18 months to 3 years), if he still struggles writing a decent sentence at 11, if he can't sit and read a picture book to himself without lots of help, I suppose the answer is there. But he does have some amazing skills. Put him in front of a computer and he can make it do things you never dreamed it could do.

Don't get me wrong, we're in no way giving up on him. Just trying to put him in an environment where he can turn those amazing splinter skills into skills that will help him (hopefully) be able to live independently one day. Find something he can succeed at and feel some sense of accomplishment instead of constantly being shot down. No final decisions will be made until the end of the month, if then. Obviously this is a big decision and one that won't be made for sure until everything has been taken into consideration.

He's an amazing kid. He is so smart in his own way. He's just wired for a different world. I am so fortunate to be his mom. By having that privilege, it's my duty to help him find his way - wherever that may lead us.

Amazing, Simply Amazing

I'm pretty sure that Saturday was the most amazing day my kids have had in a very long time. After months of really hard news, a lot of struggles and disappointments, thanks to the Starlight Foundation, we had a day full of smiles, wonder and simply being a kid.

Starlight provided us awesome tickets to a Jacksonville Suns baseball game. Jax is a little over three hours from here so I decided to make a day of it. I surprised them with a trip to the Jacksonville Zoo before the game. We got all the way to Jax and into the parking lot of the zoo before they had any clue we were doing anything but the game. They read the sign "Jack...son...ville...zoo...and...gardens" then a pause, then "JACKSONVILLE ZOO AND GARDENS!!!!" I so got them good :D
The pictures speak for themselves, it was amazing. From seeing the elephants, to feeding sting rays, to riding the train, to feeding giraffes, we'll definitely be making a return trip (though maybe we'll wait for a little cooler weather ;)

After the zoo we headed to the ballpark. My kids have never been to a game before (*blushing*) so this was an entirely new and exciting experience. Starlight got us amazing seats, refreshments, and my kids really enjoyed being with other kids with chronic health conditions. When it was time for Beans' tube feed, there were no stares, no comments, it was just normal.

Perhaps the highlight of the whole day was when the kids got to hang out in the Suns' dugout right before the game, run out the field with the players and stand with them during the national anthem! I was trying to choke back tears the whole time, seeing my kids out on the field, knowing they were having the time of their lives. What an amazing moment!

Here are the kids running back to the seats. Beans is just to the right of middle in a blue shirt, Little Man is in purple but pretty hidden by the kid in yellow. Thank you Starlight! Thank you for giving my boys some happiness. Thank you for giving them time to be kids. Thank you!

Are You Ready for This?

Due to a major snafu with the transportation department at the kids' school district, I transported them both myself today (not usually an option due to conflicting school schedules - two schools that both start and end at the same time, miles apart, does not work yet. Once I get that cloning machine invented it'll be doable. ;). The cool part about this? Well, I got to talk directly to Little Man's teacher both before and after school. I can't stress enough how important having a good relationship with my kids' teachers has been. Call me a control freak, but I like to know about things going on in the classroom - big and little. I like them knowing they can call over any question or problem. I like them knowing that I care very deeply about these kids, will fight for them, stand up for them, and cheer them on at every step.

This morning Little Man's teacher was very frustrated at the sudden issue in busing yesterday that put him home at 5:15! School gets out at 3:15 so that's 2 HOURS on the bus. That's ridiculous for any kid. Add in autism, seizures and emotional issues and it's truly amazing he made it home without a problem. By having a good relationship with his teacher I was able to get more information about the situation and I'm making progress getting the situation resolved.

I have to admit though, I'm getting awfully tired of being "that" mom. All I want is my kids to go to school and back home safely every day while being properly cared for. That's all. I'm not stuck on specifics, but they have to be safe priority number one.

Despite those frustrations, by picking up Little Man I got an amazing report today. He did not miss a single point today which means he was paying attention and doing his work every time the timer went off - HUGE, HUGE, HUGE. Mrs. M also told me that the teacher who he had the big incident with on the third day of school, Mrs. P, has developed a close bond with him. Mrs. P is a regular ed third grade teacher. Since the meltdown, she has come to check on him every day. Today she was so proud of how well he kept himself together after the big bus snafu that she gave him a Golden Arrow Award. This is very special. He gets to eat lunch up on the stage on Friday, got a special award and some other things. His teacher and I are both so proud of him, and he's SO proud of himself.

Keep up the good work Little Man!!! You've come so far and have even more great things to come!

The Most Important Thing

Little Man did this at school today and it's just too precious not to share.
The most important thing about me is that I protect my friends.
I like friend
and Mrs. M
I have Wii, PS2, DS
But the most important thing about me is that I protect my friend.

Isn't that the most precious thing ever??? I sure love this kid!

A New Week

Sunday, the start of a new week. Last week was pretty successful as far as weeks go. We got a lot accomplished between Beans's IEP meeting, his real first day of third grade, and the start of my semester. It's a bit hard on Beans getting into the flow of things again, especially missing that all important first week with his friends. He had a couple days of tears after he got home on Tuesday and Wednesday, but he did really awesome at school. Thursday he had no tears, but came home with a fever. :( He stopped tolerating his feeds, was congested, coughing and miserable. School was out Friday, but he's going again tomorrow. Hopefully he can make it longer before getting sick this time.

Little Man, on the other hand, did an amazing "first" on Thursday. He did his homework - by himself and without being told - while on the bus coming home!!! Now, to understand how HUGE this is you have to understand that he has an incredibly short attention span, very, very delayed fine motor skills so writing is beyond difficult, and has never been self-motivated to do anything unrelated to an obsession of his in his life. So when he told me he'd already completed his homework I'm embarrassed to admit I didn't believe him. I checked it out and sure enough - not only had he completed it, but he did an awesome job! Is this a sign he's maturing? Is the higher dose of seizure meds making a difference? I don't know but I am one proud mama! :D

Yesterday we hung around the house, letting Beans rest and enjoying our time together...while I made sure the washing machine got a good workout. ;) Then today we went with Grandma J to a bird expo. We were running early so we stopped at Sonic and picked up chicken for Little Man and I to share and Beans had a favorite EOS lunch - Sonic ice with a side of Nintendo DSi. :D


The bird expo was really fun. The boys especially enjoyed the couple week old parrots. They were ugly, but so cute. Both of them had amazing behavior, even with all the brightly colored toys, lots of people and a fair amount of noise. Beans reacted to something while we were there and ended up congested and not feeling fabulous, but still had a great time.

Little Man was proud to get a bird tattoo. He was so happy with it I let him keep it on until morning when we'll have to wash it off for school. Hopefully we don't have too many tears when the time comes.


Now the little ones are tucked safely in bed, sound asleep. Hopefully having wonderful dreams. Good night. :)

...And He's Back!

Think he was a little happy to start school?

He was totally exhausted when he got home and had a few tears, but he'll get used to it. :D

Your Attention Please

I am proud to announce that Beans will be returning to school in the morning!!! We just got home from my fourth meeting with the school administration, trying to make sure he would fully be taken care of, be safe, and have every opportunity the other students had. It's been a long battle, but I fought the dragon and WON!!!

Tomorrow my son will go to school with the other kids, get fed in a room close to his class during transition times so he won't miss academics, have several people trained in his medical needs including use of his Epipen and administering Benadryl via the g-tube, will get to fully and safely participate in field trips .... and .... yes, he WILL be able to participate in PE and recess!!!!

I am so glad the advocate and his complex care nurse were able to attend. I think it helped a lot with everyone knowing I wasn't standing on my own and had backing. The compliments and apologies as we finished up didn't hurt either. ;)

Tonight we celebrate a step back into normalcy for Beans!!! What a happy day!