Zoinks!

Yesterday we celebrated the end of summer by going to Zoinks. I thought the kids would be thrilled to play on all the giant bounce houses, blow up slides and play equipment. A sensory child's dream come true.

Upon entering the room Beans threw his hands over his ears and proclaimed the place too loud. Should have been my first indication we should try something else. He got used to the noise and discovered a slide and little monkey went to town. He even found another boy - his age even! - to play with and they romped around together.

Little Man didn't show any apprehension at first. The equipment was really hard for him to climb up but he still was able to maneuver it. He found this spot with all these squares that he squished himself inside of and was in heaven. He didn't do much climbing or sliding after the initial couple of times down but he liked being squeezed by the different obstacles so he found himself some "nests".

I settled down in the wonderful parents' lounge into a lovely leather recliner, free wifi and the company of other parents. This is the life I thought! The kids had to walk past me to get anywhere plus their wristbands had to match mine or they couldn't get out. The bouncies were soft so I didn't have to worry too much.

I logged into AIM and started chatting with Uncle J. Then it was time to feed Beans. Track him down and smile at the fact that he's playing with another kid! Get him fed and send him back to play. Shortly after I get settled back in the recliner, Little Man comes up and asks to leave. He'd definitely hit sensory overload and was on the verge of meltdown. While I quickly scooped up my stuff and grabbed Beans, Little Man could take it no more and the meltdown started. We made a quick escape at that point. Beans was upset to have to leave so soon and so suddenly but was a good sport about it.

Personally, I was a little disappointed. I had these grand images of taking the kids to go play with other kids while I interacted with adults. Relaxing for at least a couple hours. Illusions, illusions. It may not have worked out how I had planned but they each did have some fun there, even if it was short lived. I figure they'll never learn to adapt if I don't keep exposing them to things so regardless of the outcome, each time is worth it.

In other news, Beans got a new mask and nebulizer cup. It's so cute! The cup is purple and green and the mask is a dinosaur. He's been needing it pretty often again so having a nice new one is great.

Thanks to Aunt C and Uncle M I was able to pick up the kids' school supplies for this year. I can't believe how much they needed or that they start in just a couple weeks. Wow!

In upcoming appointments, Beans sees immunology on August 4th, both boys see genetics on August 17th, and both boys see ENT on September 25th. When we see genetics I'm hoping they can answer the question I'm terrified of right now and that is whether the boys are showing some signs of progressing (getting worse) or whether they've both just hit bumps in the road. My biggest fear right now is things that I've been shrugging off are actually signs that things are going downhill.

There are multiple issues in each of them I'm concerned about but let's just hope the geneticist has some answers and we're just at a bump not a downhill slide.

And finally, in exciting news especially for Beans, our backyard tadpoles have started growing their rear legs! As of yesterday at least two had them. I haven't checked yet today. Here's a pic of one of our tiny little friends with his legs. They're very white so hopefully you can see them. They almost look like tiny white sticks right where the tail meets the body.

A Day at the Beach a.k.a. Shark!

Today we went to Shell Point Beach at Little Man's request. We arrived to see a bunch of people fishing. As we walked by, a guy was reeling in a big fish he had caught. I got our sheet spread out and the boys raced into the water.

There's excitement just up the beach a few yards. What are they saying? Shark?!? Yes, SHARK. My boys are in the water. I yell and Beans comes running, Little Man is completely oblivious and starts to come then turns around and goes back. I get him out of the water and we run up to where the people are fishing. Sure enough, one of them had caught a baby hammerhead shark. It was probably around 2 feet long. They unhooked it then set it back in the water.

Beans couldn't handle the excitement and, before I could stop him, ran right in after the shark. Oh boy. The shark was mad and first came charging up at all the people standing there, so we all moved back. Then it turned back towards the ocean. Beans, being Beans and all, ran after it! He actually reached out and grabbed it but thank goodness it slipped out of his hand. I snapped this pic right before he reached out to grab it.
I then grabbed Beans and we left Hammerhead to swim home while we went back down the beach a bit. Little Man was completely oblivious to all the excitement. Even though I made him run down with us and all, it wasn't until quite a while later that he realized there was a shark. Lol. He's quite happy to stay in his own little world. :)

It's the Little Things

Today nothing fantastically unusual happened but it was one of those days you look back and smile. The little triumphs we did accomplish. We went grocery shopping at Walmart which tends to be a wearing experience on all of our nerves. Overstimulation, people everywhere, a million things that every kid wants. And then add going on a Saturday (great timing Mom!).

Beans rode in the shopping cart and was so well behaved and wasn't bugging anyone. Little Man walked beside me and had his heart set on getting a new notebook. Normally, saying no would lead to a big meltdown and a messy public scene. Not today. :D Little Man started to get upset and all I had to do was take him to a quieter corner of the aisle, talk quietly to him and remind him to calm down. And that ladies and gentlemen, was it! No meltdown, no crying. It was a wonderful day!

This evening Little Man and I were outside looking at the tadpoles. Nothing amazing was said or done but just a lovely quiet moment with my boy, watching nature. We've watched these tadpoles since they first hatched and now some are at least 1 1/2 cm and look like they'll soon be sprouting legs. These moments outside, with the woods behind us, no noise of traffic or other people, just my boy and me are priceless.



Tonight at bedtime Little Man stretched out in his body sock, that's way too small but he loves it even more that way. We watched Austin Stevens: Snakemaster on Animal Planet as he laid there so content. What a wonderful boy he is.

One of Those Days

Most of the time I can handle things and live in a state of mind not worrying (well toooo much) about the day to day, just doing what has to be done and getting on with it. And then there are days like today.

It started off with me going through all the filing I'd set aside. Psychological and development results on Little Man. IEPs for school showing exactly where their academics are and where they should be. The notes from Beans last IEP meeting and all the things I need to bring up at his health plan meeting in the next couple weeks. Then came the page that hit me the hardest.

I decided back in May to change the kids' behavior therapy over to a different center, mainly to get them a male therapist. When I had them discharged from their previous place they sent me paperwork - of course, everywhere has a stack of paperwork right? Beans was pretty much as expected - goals of social skills, asking before hugging, participating. Next in the pile was Little Man's. He started therapy a year ago there with 3 diagnoses: ADHD, autism and mood disorder - not otherwise specified. The discharge report has at least 7 diagnoses listed and phrases like "deferred but probable multiple ID", "Intermittent Explosive Disorder" and two types of seizures (seizure disorders?).

His GAF (Global Assessment of Functioning Scale) level was 52 when he started. 100 is perfect, 90 is normal. 51-60 means "Moderate symptoms ( e.g., flat affect and circumstantial speech, occasional panic attacks ) OR moderate difficulty in social, occupational, or school functioning ( e.g., few friends, conflicts with peers or co-workers )."

His discharge score? 40! meaning "Some impairment in reality testing or communication ( e.g., speech is at times illogical, obscure, or irrelevant ) OR major impairment in several areas, such as work or school, family relations, judgment, thinking, or mood ( e.g., depressed man avoids friends, neglects family, and is unable to work; child frequently beats up younger children, is defiant at home, and is failing at school )."

His goals were things like recognizing anger, identifying feelings on request and completing tasks requiring 3 minutes of attention. The best he did on those was 4 out of 10 times with the first only 1 of 7.

I knew he was having issues but really, I don't think they're nearly as bad as they say. Maybe I'm in denial but I doubt it (lol isn't that almost what denial means?) We see the new therapist on Monday and I'll be bringing this up with him. I really don't want everyone thinking he's got so many issues when, personally, I think his issues are mostly related to his delays and autism.

Some days it's hard to see reports in black and white. :(

Moments with Beans

I swear this kid cracks me up. He's given me so many of those try-not-to-laugh-while-you're-disciplining moments.
For example, at the 4th of July parade there was a float and soldiers marching for the Sons of Confederate Veterans. Remember we only moved down here to the south a year ago and previously lived in Utah. As the parade entry marches by Beans blurts out loudly, "We won the war, right Mom?" Ummm....yes son, the North did win but I think it's time to change the subject as an inquiring mind starts to ask questions about "what was that war about anyways?"

Let's not forget yesterday when I asked him to pick up his toys from outside. He announced quite impatiently that he needed to use the restroom first. I turn around to see him with his pants half way down and "watering" the tree...now of course the tree he chose wasn't one in the vast forest behind us, but the one solitary tree viewable from the road. Mr. Innocent? I don't think so. :P

He also has such a sweet, caring side especially for animals. Beans, Little Man, and the next door neighbors enjoy watching the toads and spend a lot of time doing so each day. Today when they went outside, one of them was dead. Mr. Toady had a sad accident with a splinter apparently. Beans cried and cried and had Little Man make Toady a gravestone and the neighbors held a funeral. Good bye poor Toady.

In other news, we're still waiting on Little Man's genetics results. I am hoping for an answer so badly. Waiting on Beans wasn't that because I hadn't expected them to find anything, but since they did and now we're waiting on Little Man's it's taking a toll on my nerves. We should hear something any day now I hope.

Other than that, we're enjoying the last couple weeks of summer. The kids go back to school on August 13th. The big change around here is that I'm going back to college to get my nursing degree! My classes start on August 24th and honestly, I'm excited.

Before then I have a meeting or two for college, Beans sees immunology in Gainesville on August 4th, hopefully a genetics appt soon with results, I have Beans health meeting with the nurse, his teacher and various other staff about his tube feeding and other needs for school, multiple therapy appts and Open House at both boys' schools. Throw in back to school shopping and the normal day to day of these little men and we're a busy family. :D

Lessons from Nature

Lesson 1: Size truly doesn't matter as long as you've got the right stuff.
On top of the big Orb Weaver spider who is belly up you can see a smaller spider about the size of a nickel. Yesterday afternoon I saw the two on the Orb Weaver's web and watched for a while sure that the Orb Weaver would eat the little guy. The Orb Weaver I saw yesterday is at the top of this pic - all that's left is legs! Little spider is now going after Orb Weaver #2.


Lesson 2: Sometimes the mud is the best place to be.
Beans and S showing a toad our new tadpole deluxe condo while I was still working on it. The tadpoles will be moving from their bin where they're quickly running out of room to their new luxury accommodations tomorrow.


Lesson 3: You don't need to kiss the frog to make it a prince.
They're perfect just the way they are - warts and all.


Lesson 4: Jumping right in and getting wet is the best way to have fun.
Or in this case trying to run from Mom while she sprays you with the hose.

One Year Later - Last but Not Least

Thanks for hanging in there with my long, drawn out explanations of the boys over the past year. I want to always be able to look back and remember how much things have changed.

A year ago I took off from Salt Lake with a couple suitcases, a couple carry-ons, two boys and a cat. Yes, we brought the cat on the airplane with us. This added quite the excitement to our trip. The first leg - from Salt Lake to Las Vegas (I know wrong direction but that's flights for you) - he did perfect. No noise, no one knew he was there.

The next leg - from Vegas to Atlanta - kitty started meowing about half way through. I figured he was bored, scared and wanting attention. Until I smelled it. Oh CRAP - literally. If you've ever flown with an animal you know you're not allowed to open their cage for any reason on the flight or in the airport except while going through security. Imagine trying to keep two kids occupied, dealing with a beeping feeding pump, an irritated man in front of Beans as he hated the kid playing the touch screen games on the back of the headrests...and then realizing kitty's contribution and willing the plane to land as soon as possible.

We exited the plane in Atlanta as quickly as possible with two kids, stroller and way too many bags and made a bee line for the bathroom. I'll spare you details but let's just say I did the best clean up job I could using toilet seat liners in the stall. And we still had the last leg left.

Back on the plane to Tallahassee, the cat won't stop crying, he smells and there's nothing I can do about it, the kids are antsy and I'm on my last nerve after a full day of traveling. The best news of the day was we made it all in one piece - minus a certain cat carrier liner that I tossed in Atlanta - and looking back it's quite the interesting/nerve-wracking/hilarious adventure.

Over the past year I've faced more joy than I could imagine - no more MRSA for Beans, bolus feeds, seeing him socialize so much more, Little Man having the opportunity to play his guitar, play in the dirt and be a little boy - and more heartbreak than I could have foreseen - diagnoses of learning disabilities, neurological conditions, school meetings with evaluation results and seeing the delays on paper, and both boys being retained - and the mixed bag of genetic confirmation of the problems. And yet, I have so much hope for where we're headed. Without knowing what we're dealing with, how could we know how to best help them?


We're looking forward to new classroom placements, new therapies and most of all I've learned acceptance. We are so lucky to have what we have. So blessed with all the things the boys can do. They work so hard and it doesn't matter if it takes them longer, or really how far they get. I've learned to accept things for what they are and be happy with all the good things because no matter what the situation, there are always good things. I am definitely the luckiest mom in the world.