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.

One Year Later - Part 2 - Little Man

The past year with Little Man has been a time of great highs and some pretty frustrating lows. When we left Utah, he had just finished 2nd grade at a charter school for high-functioning autistic kiddos. We knew he was having some significant emotional/behavior issues but he seemed to be pretty much on track academically.

He spent the summer soaking up the sunshine and spending fabulous time with Grandma J and Grandpa R. Over the summer his behavior was unremarkable, just doing fabulous. He spent lots of time outside playing - something that was pretty limited back in Utah due to the owners renovating our townhouses. He discovered such fun as the Lego store in Downtown Disney - one of his all time favorite places to be. Imagine every kind of Lego possible, tables with Legos waiting for you to build to your heart's content and even a Lego race ramp where you can build your vehicle and race it against the other kids'.

When school started in mid-August, the special ed team and I decided to start Little Man off for 3rd grade in an inclusion classroom (half special ed/half regular ed with two full time teachers - one regular ed teacher and one special). I was thrilled as I'd always "planned" in my Mommy mind on him being out of special ed by third grade. The first day of school was wonderful. The second day blew up in our faces. Within a few weeks he was moved to the self-contained class for severe to profoundly autistic 3rd-5th graders. Obviously not a good fit as he's very high-functioning but it was the only place we could put him then. Living in a tiny, rural district leaves few options for the special ones among us.

Despite the imperfect fit, Little Man seemed to thrive in the new class. He loved the one on one attention and the teacher found ways to work around his challenges. His reading, despite our prior thoughts, is very delayed so she found a software program called Write OutLoud that reads back each word he types so he has immediate feedback on what he's really writing. He has a very difficult time with his hands so she got occupational therapy involved, got him an AlphaSmart to type his work on, and moved as much work as possible to typed or oral instead of handwritten. She got Little Man to enjoy writing stories and when he came up with a play, the whole class performed it for the other special ed class. Non-verbal kids didn't stop them, the whole class participated.

Moving across the country also meant a new team of behavioral/developmental specialists. I couldn't have imagined what we were about to step into and the tremendous impact this would have on our lives, but especially on Little Man. The new psychiatrist and developmental pediatrician (they work together and see him at the same time, every time) spent a lot of time talking to him and they decided to refer him for neuroacademic testing and things didn't seem to be adding up. He was 9 years old and left a letter out of our last name when they asked him to write it, he could spell simple three letter words but no more than that, and single digit addition and subtraction. For a child who was supposed to be near grade level in academics, this was obviously a problem.

The next several months were spent in various evaluations. IQ testing, academic testing, more tests than I can remember and we got some surprising news. The testing showed that Little Man has a normal IQ but learning disabilities in reading and writing, visual motor sequencing issues, the receptive language level (what he understands) of a 4 year old even though his expressive language (what he can say) is pretty much on level. Various other scores showed he has very splintered development with some skills on track and others severely delayed.

The psychiatrist explained his school behavior issues as this: Imagine you're at work all day and people are constantly telling you to try harder, that's not good enough, you can do this if you just try, pay attention, sit still and you're doing everything you can and just not understanding. She said we too would reach our breaking point and hitting and kicking is the only way he has of coping when he reaches that point. It made a huge impact for me and helps me understand him so much better.

In April, Uncle J came to visit for Easter and bought Little Man one of his dreams - a guitar! Complete with amp and all accessories. He started lessons soon after and, as I shared before, he recently got a scholarship that we are all so proud of him for. He's always loved music and now he's creating music of his own.

It's been a challenging year for Little Man, and a year of acceptance and change of thinking for me, but we'll continue to work through things and with greater understanding comes greater opportunity. I have no doubt that big things are in store for this boy.

One Year Today - Part 1 - Beans

Wow, it's been one year since we moved here to Florida today. What a difference a year can make. Like any year there's been the good, the bad, and the great. There are so many good things that have happened in the past few months. There is just so much to tell that I'm going to break this into three posts, this one will be all about Beans. :)

Last year just before we moved down here he was battling constant MRSA infections, missing at least a week of school a month due to infections, had just finished his IV Vancomycin through his PICC line, and was dealing with that horrible NJ feeding tube since the infections plagued his GJ tube in his stomach. He had also just been diagnosed with a primary immune deficiency. It was a pretty darn rough time for Beans.

We moved down here with the NJ tube in place and, being an active little boy, he was constantly getting it caught and pulled out. Replacements were pure hell. In August, Beans started school in the self-contained autism classroom as he was still refusing to speak if he didn't know you well. Hahaha just to think of that now just seems unreal. He's turned into quite the friendly little boy, even walking up to other kids and asking them to play, talking people's ears off, and most annoyingly - wanting to touch people constantly. Ahhhh!
A couple weeks after school started his GI in Orlando got his NJ replaced by another GJ and got that nasty tube out of his nose. He was back to his normal continuous intestinal feeds running 22 hours a day. He started to love going to school again and was ready each morning when the district van came to pick Little Man and him up.

By November school had him going to an inclusion class for math with his 1 to 1 aide. He was thriving and interacting with "typical" kids. Whines about his homework but does it anyway.

In December he was admitted for a week - and to everyone's amazement and pure joy - he made the switch to being fed via tube into his stomach every 3 hours instead of connected to his backpack being continuously fed for 22 hours a day. He'll still require his feeding tube for the foreseeable future due to dysphagia and his esophagus not working properly but this is a HUGE improvement in quality of life for the little guy.

January started off with him full time in the inclusion classroom! I really pushed for this as his social skills had come so far. Socially he did do fine. He made friends! He was starting to learn to play with other kids at recess with prompting from his aide. And then the downside hit. Everyday after school he'd come home and was either a total terror until bedtime or would come home and crash and cry for ages. His illness rate was ridiculous and he got to the point he'd go to school for two days to be out for five with fevers. He lost the progress he'd made on the bolus feeds in December and was back on his backpack full time. He ended up going back to the self-contained autistic classroom for the full day. His one on one aide worked with him intensely and we discovered he seems to have some degree of learning disability in reading but we'll work more on that this coming year. He will be retained in second grade as his current academic levels are only that of late kindy/very early first - except math where he shines. :D

On the 23rd of May Beans had his 8th birthday! He celebrated at school with his friends - notice NO backpack! He made it back to bolus feeds shortly after going back to the special ed class. He brought french fries and cupcakes to share and loved being the center of attention. May also came with a visit to genetics to try and find the common denominator for so many issues. After years of searching and never knowing the cause, I was shocked when a month later the phone rang and there it was...the answer. It was discovered Blade has a chromosome deletion. We're still in the process of figuring out what all that means and its full implications but at least we are getting there now.

Beans is looking forward to the last few weeks of summer by playing at the park, visiting the beach, and watching our newest friends - a massive family of tadpoles in the backyard. One year from PICC line to no line, continuous intestine feeds to bolus stomach feeds, no answers to finding a diagnosis. Wow.

Congratulations Little Man!

Saturday Little Man got a very important letter in the mail. In May we had turned in a scholarship application for his guitar lessons. This was quite the endeavor for him. They required a 400-600 word handwritten essay about what the child's goals are and such. That is way beyond Little Man's capabilities so his music teacher said to let him type what he could. He ended up composing an essay, about 50-100 words, that basically said he was 9 years old and loves music. That he saw the movie "Miracle Run" about the boy with autism who learned to play the guitar and he wanted to do the same. I wrote a little note about his abilities in the area where he was supposed to write his essay. His music teacher, who was also his music therapist at school last year, also wrote a letter.

I am very excited to announce that our own Little Man is one of the ten selected scholarship recipients for this year!!! He is so incredibly proud of himself and I really appreciate how big of a deal his aunts, uncles and cousins have made of this. For him to have something to be so proud of right now is just perfect timing.


The scholarship will pay for his lessons for this fall and spring term and for up to six years if he's making adequate progress. They have specific ways of determining progress, but I am hopeful that since they granted him this opportunity, that they will also be flexible in his progress. So please join me in congratulating our newest musician - our own Little Man!

A Day in the Life

Today was a pretty normal day around here. Nothing terribly exciting happened and that can be a good thing. :) The most exciting part of our day was when I was sweeping the front porch and found this little guy. You can't see terribly well in the picture but he's a bettle, about the size of a golf ball with three horns on his head. I'm not quite sure what his name is but needless to say, the boys were intrigued.After the beetle discovery the boys got down to business. They got in the dirt and brought a little water outside to make mud - of course, what else would boys do? Then Little Man, Beans and the two boys next door made "the world's biggest sandcastle" but I think it was really the world's biggest mess. The neighbors brought out Otter Pops and Beans came running to me for help with his muddy hands in the air and the pop in his mouth asking for help to open it. Of course I had to snap his pic before I could help him. ;)

Here's all the kids, neighbors changed clothes but mine just washed their hands before the neighbors brought the pops out. The oldest neighbor is going into 6th grade in the fall, then Little Man is 9 1/2, the younger neighbor is going into 3rd grade, so about 8, and Beans - the goofball - is 8.
After any good mud play, Mom always requires a good shower. They stripped at the doorway and I ushered them into the tub. They came out nice and clean, if not thrilled with Mom taking pictures, AGAIN!
After bath it's time for tube care and meds. Blade doesn't always need a breathing treatment before bed but lately his airway issues have been acting up a bit so he's needed it the last few nights. He's not asleep here but busy playing his Nintendo DS waiting for his neb to get done.
And then, peace at last. I wish this was from tonight but Little Man's still awake so this one from last night will have to do. Sleeping soundly with his arm around his kitty. How precious is that?

Looking Up Again

After a couple of rough emotional days, things are back to normal. Little Man has been back to playing with his Legos and on the computer. His tremors were giving him such a hard time yesterday that he couldn't put his Legos together so he asked me to help him. Well, secretly - or maybe not so much ;) - I love playing with Legos so both mom and son were happy.

Beans was back to being full of giggles and of course wanting all the attention all the time. He's been enjoying playing WoW on the computer with his cousin Taters and his uncles in Utah and NYC. Still lining his Pokemon up across the hall or the front room but some things never change. As long as he's happy and entertaining himself I'm good with it.

Last night I caught a precious moment between the boys. They were sound asleep and both had managed to weasel their way into my bed. Since I've been a major insomniac as of late, I wasn't there to get the snuggles but I did manage to capture this with my camera. The boys were sleeping next to each other but their little feet and legs were overlapping and I just had to snap that little moment in time.

And lastly, when I went out to get the mail today, I found a visitor on the side of the house. He was happily spinning his web, and I do have to admit he's beautiful, but his size was a little shocking. Just a reminder we're not in Utah any more.In six days it will be the one year anniversary of us moving to Florida. I'm amazed at all the changes over the past year. Another post for another day, but one I'm looking forward to writing.

Meltdown Mayhem

If you have a child with any form of autism spectrum disorder, or have spent much time with one, you have likely experienced the not-so-pleasant experience of a meltdown. Summer break is wonderful for most kids but when you thrive on constant structure and routine and then it's suddenly gone, it tends to wreak havoc. This is Little Man's first real week of summer vacation. He had summer school until July 2nd that kept him in routine. We did well all the way up until today.

Despite my best intentions, I just cannot keep life as structured as he needs it. Add that to a little brother who is obsessed with touching people - and I don't mean normal pesky brother, I mean obsessed with touching people - when you can't stand to be touched, plus too much sensory overload and bad things are bound to happen. Little Man completely lost himself today and screamed, cried and was in total meltdown for the past two hours. I tried all the tricks - first sent him to time out for screaming but once he's past the point of no return that only escalates things, as it did today. Then he went to his room to cry and thrash around on his bed. He pulled past the completely physically out of control (although he did not get physically violent which is a HUGE achievement) and was just emotionally out of control.
Kept pesky brother out of the room, he asked for ear plugs and then I wrapped him tightly in his blanket as deep pressure is so calming to him. Another while crying and then bam - it was over like nothing ever happened.

To be perfectly honest, I felt a little like having a meltdown myself today. I got more information from the genetics counselor about Beans' testing and found out the part of chromosome he's missing is 7q35. She said it's close to the end of the chromosome and he's missing basically that whole band. What does this mean exactly? Well, not even the experts know yet for sure. Little Man's testing will give us a better idea of what this means, whether he has the same deletion or not. Apparently this test is so new that Beans is coming in at the very beginnings but at least it's the start of an answer to questions we've been asking for a long time.

Then the mail arrived. Little Man's report from summer school came. He still is at a mid-first grade level in reading despite having been through third grade and the summer school program. He will have to be retained - although he doesn't know this yet - it's manadatory. The hardest part about this for me is that in first grade he seemed to be doing pretty well in reading. I had a few concerns but nothing major and he passed the first grade state testing in both reading and math. Now here he is two years and much more help later and he's testing at mid-first grade level. Has he really lost skills? Was he able to compensate better in first grade and just isn't now? No one really has the answer but it breaks this mom's heart in two, seeing her boy struggle.

On the bright side, it's just about time for Beans and Little Man to head to bed which means some precious quiet time for me and a new day in the morning to look forward to.

Fireworks and Feelings

I love holidays. Any holiday. Any reason to have fun. The stubborn streak in me is determined to celebrate everything, no matter what it takes. Of course for the Fourth of July that means a parade and fireworks. The boys love the candy from the parade, even though Beans can't eat but a couple things. We packed up and headed out. Whoever decided that 4 pm is a great time for a parade in July in Florida was clearly out of their mind. :P The parade was long enough to be fun but short enough that they stayed fairly interested until the end.

After the parade we went home to rest and cool off for a couple hours until time for fireworks. This wasn't quite as easy as the parade. Lots more people. Dark. Loud noises. Two feedings for Beans. And a Little Man who will walk off never to be seen again if not watched constantly. One mom divided by two boys means there's no possible way to watch Little Man every moment. Yet I am determined so Little Man wore a wrist strap hooked to the belt loop on my pants while Beans rode in his chair. He can walk just fine but tires easily and has poor tolerance for the heat. Carrying him is just too much now hence the chair.

We found a nice spot to spread out our sheet. Last year they were pretty nervous because of the loud noises but this year I held Little Man on my lap and Beans sat close and they loved it. Their favorites were ones they called Sparklers...the ones that were pretty and then sparkled out afterward.

That's the storybook version. As we were driving home I was shocked to find myself with tears in my eyes, and not happy ones. Why, after such a fun day, does it hit how "special" the boys are? Watching other kids Little Man and Beans ages running around with their friends, swimming in the river, eating whatever their little minds dreamed up. While at the parade Little Man coped with the crowd of people by holding his car upside down and spinning the tires. Pushing Beans wheelchair back to the car because otherwise I'd be carrying him as he was just too worn out. Little Man running in circles waiting for the fireworks to start as, once again, he was overstimulated by the crowds. Ignoring the stares and pretending I don't see them as I'm syringing formula into Beans stomach.


Despite all that, we are so incredibly blessed. Little Man and Beans are perfect just the way they are and I know that. Just to look at them you wouldn't know they had any issues. They are learning, even if it takes them longer. Some nights it just hits me what they are missing out on and how I imagined life was "supposed" to be. And then I look into their smiling faces, so thrilled by the littlest things, and I know I'm the luckiest mom in the world.

Toads and Fish and Bird Eggs...

that's what little Beans are made of. ;)

Today we drove into Tallahassee to go to Tom Brown Park as Crawfordville has a serious playground deficiency. The boys had a great time. We found a nice playground shaded by the surrounding trees with one other little boy there. Little Man spent his time running around on the equipment. I took a spray bottle with us so I'd mist him every so often to help him stay cool. He was plenty hot still but had a great time.Beans on the other hand is always more interested in finding something to catch and bring home. *Sigh* First he found a toad. We have many toads in our backyard as do Grandma and Grandpa. It never ceases to enthrall Blade though and he is determined to catch the ones he sees.He is very careful with his little friends I have to admit. He catches them and looks at them but will go put them down safely when I tell him to. He was doing just that, putting toady down by some trees, when he found a bird egg. Oh joy. LOL. It was neat though I have to admit. It was intact all except for one end where the bird had hatched. This was one treasure he wasn't willing to give up.How in the world do you get something as fragile as an egg safely home with two rambunctious boys in the car? I asked myself the same thing. Beans lucked out. I always have 60 cc syringes with us to give his feedings and they come in individual plastic cases. I just took out the new syringe and voila! an egg case.

After securing the precious egg shell, we wandered down to the pond. Little Man has a current obsession with fishing, although as you can probably guess, the one time we did take him fishing he was bored out of his mind and spent the whole time pulling it in then throwing it back out. Well anytime we're around water he starts in on the fishing mantra again. Then Beans saw a fish. A dead fish. Floating in the pond. B: "Mom, can I take that fish home?"
M: "No Beans it's dead and has lots of germs."
B: "I'll scoop it into the syringe case and won't touch it with my hands."
M: (Thinking Ewwwww!) "No Beans , that's gross. It's dead."
B: "Then can I catch a live one? It won't have so many germses."
M: (Shaking my head) "No Beans, it will soon be dead if you take it home. Let's go get in the car."

We had quite a nice trip to the park. Two worn out boys who were full of giggles on the drive home, even without a toad or dead fish. Thank goodness.

Finally Did It

After years of thinking about but never actually sitting down and doing it, I've started this blog to keep family and friends updated in the lives of the boys and I. Mostly it's just an avenue for me to express what's going on and have a personal record to look back on.

Little Man swimming at All Star Resort
June 1, 2009

So, for those that don't know, our family includes Little Man who has high-functioning autism, hypotonia, tremors, chorea, learning disabilities and some other neurological issues.

Beans smelling the "roses"
June 1, 2009

Beans also has a form of autism called Asperger's Syndrome. He also has several medical problems including dysphagia and dysmotility that requires tube feeding, subglottic stenosis, and a primary immune deficiency. We recently found out that Beans has a partial deletion of chromosome 7. Little Man is currently being tested for the same issue. We'll know more about how much this affects and exactly what it means in the upcoming weeks.

Mostly though life is pretty normal around here. Wild boys playing the computer, working hard for school and of course the daily tickle and giggle fest. Check back often to see what our little clan is up to.