Sleep Deprivation

I am majorly suffering from lack of sleep. Ben's internal clock needs to be reset but none of us seem to know how. The time change last week has made it even worse.

School seems to be wiping Ben out majorly. Before he would go to bed around 9 pm and would sleep until at least 5 am. I can function fairly well after that time, so I didn't complain (well, not too much). I hear other parents talking about how their kids love to sleep, or how they have trouble waking them up. I envy those people.  I may even loathe their well rested selves be jealous.

We have tried everything. Naps during the day to keep him awake later. Nope, he just wakes up happily after 7 hrs wide awake anywhere from 315-430 am. We've done Melatonin. But that wont work because it's not the getting to sleep that's the problem..it's the staying asleep that's it.

Last night I even bought one of those nifty sound machines. You know the kind that sound like anything from a thunderstorm, to a babbling brook (this would seriously make me have to pee), to the not so peaceful sound of a summer night. We chose the white noise setting. We live a mile or so from train tracks and though I cannot hear them, my Mom can when she visits, and she thinks they might be waking Ben up.

No such luck last night. Ben came bounding down the hall at 315 am, bright eyed and bushy tailed. I put him back in bed and told him it was way too early and he should go back to sleep. Apparently, that concept was lost on him. I have even laid in his twin bed with him. To which he looks at me adoringly and wants to cuddle and roll around continuously. You'd think this would make me melt into a puddle of lovey, but at 315 nothing  can crack through the haze.

I talked to his doctor about it yesterday trying to brainstorm, but at the end she just told me that she was really sorry for me (ha!) and right now there isn't a solution.

So if you see me out and I look a little dazed and confused..I am. I had trouble counting out change to pay for my soda at the gas station this morning. Just bare with me..I'll get it together. Eventually.

This was taken on the weekend of the Mom's retreat that I went to. I had sleep this weekend. Oh yeah..and professional makeup done. I can look like this. Maybe someday when I sleep again I will! I pray I don't have to wait until next November for the next retreat to get it!

Catching Up

For the longest time I felt that I didn't have anything to write. But mostly it's because there's just been a lot of little things going on. Not really anything massively big..but tons of things to take my attention away from writing anything of significance. Not that this is going to be ground breaking..but just trying to fill in the gap from the close of summer until now.

This summer I had the joy of finding out my gall bladder was going kaput. It constantly felt like I had a rock or balloon in my side, accompanied by the occasional horrible pains. I finally got myself to see the Dr. Then to the surgeon and finally had it removed at the beginning of the month. To be honest, after the first couple days it really wasn't that bad. I had originally planned to recoup at home..alone. But in a moment of panic I asked my Mom to come and help me convalesce. I'm really glad I did. It was nice to have someone help with Ben and also to deliver me food and beverages so I could lay like a lump in bed for the first day or so.

What was worse though was I broke out in hives from my neck to my chest. They also moved onto my arms and a few on my back. So I'm currently on every antihistamine under the sun, got a steroid injection and slather myself in steroid cream. I'm hoping to someday stop itching and stinging. The current theory to why this happened was that surgery is a trauma, and my body went into attack mode. Because of my big family history of autoimmune disorders, she ran a ton of blood work as well and we're waiting for results. (Not too worried about this). This is what I looked like for two days :

Ben's been doing great. We're still working on adjusting the meds we started at the beginning of last month. They don't really seem to be doing too much, but it's really too soon to tell. We tried upping the amount once and it just knocked him out. The child that never sat still went to sleep for 2 hrs about an hour after taking them. Not good. Trial and error. I have noticed he hasn't been obsessively hitting me as much.

We hit the potty training pretty hard in the last few weeks. Ben is so good about going when you put him on there. However, he will still never tell you when he has to go. One thing at a time, right?

We also finally made the decision to put him in the Special Needs class at church. I'm so thankful we go to a church that can provide that for us. We were so hesitant because we wanted to keep him in the regular class as much as we could. But honestly, it wasn't fair to Ben, the teachers or the other kids. So now he's in a room where people do more than just follow him around, try to get him to sit for periods of time that he just can't, and we don't get called out of the service every week. The people really love him in there. He has fun and no one freaks out when he takes off his shoes for the millionth time, or eats part of the lesson.

Halloween is coming up and Ben is fit to be tied. Every day he talks about trick-or-treating. This is the first year that I can tell he's really truly stoked about a holiday. He loves his costume and he put it on for my parents so they could see it before they went back to AZ. I dare say that he's the cutest pirate ever!

I cannot wait for Christmas this year!! Here's hoping I'll post again before then!

I'm sad summer is coming to a close

This summer is coming to a close. I'm a bit melancholy about it. It feels like it literally just started. Most of the summer seemed too hot...too wet..too buggy to really do anything fun outside. Now that it doesn't feel like we'll melt everytime we go outside we can really enjoy it!

This weekend we enjoyed popsicles on the porch. I love that he will happily sit beside me as I talk to him while he enjoys the sweet coldness.

I'm going to miss this in the winter!!

It's that time of year again...

Time to start planning Ben's Halloween costume. He LOVES the thought of Halloween. He knows that every year he gets to hold the orange pumpkin bucket and people randomly throw candy in it. (I love it because I'm a sugar-holic and I weed through the candy I "know he wont like/can't eat". )

Last year was a struggle to find a costume. You can't put Ben in anything that requires a hood or a hat. He wore his hat briefly last year but only because his hands were so busy with the candy bucket that he didn't seem to mind so much. You also cannot have a mask or require any paint to be put on his face. Two years ago I made him into Mickey Mouse and at the end of the night he had black makeup smeared across his face. They no longer looked like whiskers.

From Halloween 2010 with Ben's cousins.

 Ignore the man hiding behind him..it's hard to get him to stand still. 

The few minutes the hat was actually worn...

I'm back on the hunt for this years costume. The choices are limited, and honestly, I've thought about him re-wearing the Marine costume because it still fits and only people in Arizona really saw him in it and we'll be in Kentucky for this years festivities. 

But for your viewing pleasure I've found a few other costumes on Amazon that I found hilarious and would NEVER be able to get on Ben subject my child to wear. 

Everyone loves a super hero! Getting Ben in this costume would involved tranquilizers (for both of us). 

My husband would be all over this one. I really hope that's not a real knife. 

Everyone loves a patriotic boy! Can you imagine putting a child with major sensory issues in a wig and 3 piece suit??  Plus it's 69.99! I think he actually looks a little pissed in this outfit. 

No child picked out this costume. You know his parents are totally behind this. I would totally pay to see this. 

I'm a quitter

I quit Weight Watchers. Again.

I started in February after finally getting SO convicted on how my weight was impacting my health. I was gung ho. I subscribed to WW magazine, tracked my points online. Mourned the foods that I was no longer able to eat (though with WW there's nothing you can't eat..you just have to make the points work.)

The weight started to come off. All in all I lost 19 lbs. I can fit into clothes I haven't worn for a while and feel more comfortable in my skin.

And then life happened.. In June we had a steady stream of visitors until Ben's birthday. I tried my best to eat healthy when we went out. But I can't avoid the desserts!

Eating is such a struggle for me. I love the comfort of something that tastes good. I love everything about food..the smell, the taste, the texture. I even love grocery shopping. There's something about the smell of the store..the searching the aisles for new items.

I also love cooking, which I must have inherited from my father. It's the only "crafty" thing I can do. I don't make anything fancy, but I don't have too many complaints from my husband. I have made a few clunkers..but that's part of the fun. My recipes board on Pinterest is overflowing with things I'd like to make (but probably never will get around to doing them).

I feel like when I have a hard day having something decadent is a reward earned. I realize that this is a completely unhealthy view of food, but I don't know how to change it. I've resigned that I will never be one of those people (like my husband) that sees food as only fuel.

It's my vice. I don't smoke, do drugs and rarely drink anymore.

So after a full month of avoiding my scale, or even worse..stepping on it with one eye covered..I've given up. I just don't have the mojo to keep counting points. I want to. I need to. I just feel like all my energy right now if being funneled into other things (like running from work to therapy appointments and wrestling a kid to get him to brush his teeth).

So I'm publicly telling you that I'm a quitter. Maybe the embarassement of it all will be enough to get me going again. Maybe I'll get around to it next month.

If you have any low fat recipes..please feel free to share them with me! Or maybe if you do any workout videos on Netflix that wont kill a really out of shape person..please let me know what they are.

I'm on overload

We have had SO much going on since Ben started school. Last week finished up week 3 of Kindergarten, and it was the first week that he made it through an entire week of school without coming home sick. (but just barely). He has been a sponge for every free floating bacteria that has been around.

Week 1- he had the stomach flu. He woke up crying (which is not normal) and like a fool I gave him juice even after he first refused it. Thankfully he had it come back up before we took him to school.

Week 2- still not feeling great. Came home early that Friday because he wasn't eating and was listless. I got home and he instantly perked up and became and eating machine. I think he played me.

Week 3- voice started going and could tell that he was really really phleggmy. Behavior has been off the charts. I made the hard call of giving him Bromfed to ease the congestion, but it made him irritable and I got hit *A LOT* . He would be happily watching the Ipad, and then dart across the room just to hit me and then return back to the ipad. I'm pretty sure this was an attention seeking behavior. I'm not even sure what I could have done more. By the end of last night he'd lost the privilege to play with any of his trains and the use of the ipad. He also had a horrible transition from his ST to his OT. She's a wonderful lady with the patience of Job (thank God). But at one point he hit her in the face. I can't tell you how mortifying that is. And it took every ounce of my being to not jerk him out of there and get swiftly spanked.

Let's hope week 4 starts out a little better. I did warn his teacher about the aggression. And thankfully I'm meeting with his behavioral therapist today to see what more we can do.

He's such a sweet child most of the time. But I'm sure that being sick, and not being able to communicate how you feel..your wants..your needs has got to be incredibly frustrating!!

Somehow I've managed to not get sick Oh lord I've probably just cursed us!  I just want us to get into a more normal routine. Maybe this will be our week!  And if not..we'll just keep working til it is..that's all I can do, right??

Transition week

Today is B's last day of daycare/preschool. I was sad just walking in there this morning. Over the last year and a half I feel like I've been the one that's made friends. They have been my allies. They've listened to me vent. They have helped B improve his skills. They care about him and us as a unit. That's how it's supposed to work, right? I feel that these women aren't there to just collect paychecks. They really have invested in each child.

Tomorrow starts our real journey into public school. No more preschool without grades. It's the big league now. I know that I'm more nervous than B is. In fact, I'm pretty sure that he doesn't even realize that this is the beginning of the next 13 years of his life. He just knows that his school is a fun place. Filled with distractions before the bus comes to get him or Mommy arrives in the car rider line.

I'm really hoping that these new people will bond with him..the way that his daycare did. I don't expect them to love him as much as if they were his own. But I want them to want him to succeed. I want them to want more for him..to achieve new independence. I know I'm hoping for a lot here.

So please keep us in your prayers that the next week goes well. We still have a lot of new transitions: 2 new therapists, new therapy appointment times (which means a change in my work schedule), and possibly adding medication into the mix in the future.

Semi wordless Wednesday

The weekend before last we went to a local Agro-tourism business called Gallrein Farms. Ben loves animals..from a distance. Up close they can be a little intimidating. He had to be helped to pet them, and then  shied away from actually feeding them. This place is great during the fall when it's pumpkin picking season. Can't wait!!

He's a lover AND a fighter

To say that this week has been stressful is an understatement. It has been a series of Dr visits, phone calls, schedule rearrangement, and just plain ol life that has all of us in a tizzy!

Last week I took B to his 5 yr old well check with his primary. He pretty much hates doctors right now. You would too if every time you went they poked and prodded you or stuck a tongue depressor down your throat.  We got some hard (for us) news that B has high cholesterol. What kills me is that he has such a limited amount of foods that he will eat. Beside maybe 1 tbsp of peanut butter a day, 1 piece of cheese daily, or the occasional french fry or chicken nugget, he doesn't really eat anything that I would classify as "bad". He drinks skim milk, eats lots of yogurt and raisins and all his bread is whole wheat.  We also found that he's only in the 15th percentile for height but 95th for weight, putting him at risk for obesity.

The Dr. threw around a bunch of theories (such as he doesn't move around enough..ha! to Prader-Willie Syndrome) and ordered a massive set of blood work. Today we took him to the children's hospital to get it all done. Needless to say, I couldn't sleep well last night because I knew how stressful today would be.

It literally took 2 nurses, a special nurse from the ER, a phlebotomist, my husband and I and one person that work as a childlife specialist for the hospital to get it done. They had to stick him 3 times (hand and once in each arm) to finally get it done.

You have never seen a child fight so hard. That is one thing that I will give B..his will to fight is amazing. I know that this will serve him well as he gets older. We've always joked, even during his actual birth, that he's like a UFC fighter.

Perhaps that's why he's come as far as he has.

I felt so guilty for having to take him there and hold him down like that.  As a parent you know what's good for your child, but having to be the bad cop all the time isn't fun!

By the time we got out to the car he was eating his usual breakfast and seemed to be happy. The wonderful people at Kosair gave him a set of Thomas bath toys (he was in heaven).  He carried on with the rest of the day and went to speech therapy and then saw his case worker.

He also was so exhausted that he had to lay down and fell asleep.  Before he drifted off though he wouldn't let my arm go. Smothering me with the sweetest kisses. Lately he's been the kissing king. He loves to love on   people. I'm so fortunate to have child that can express his love so freely.

Hopefully we'll have the test results back quickly. Until then I'm going to just keep enjoying my little love bug!

Real Conversations

This is an actual conversation I had this week with someone who actually works in the public school system.

Me:  I need to set up aftercare for my son. He's starting Kindergarten this fall.
Head of the program: OK...well you have to fill out the paperwork online.
Me: He is going to be in the special needs/complex needs program. Does that make any difference?
<big pause>
HOTP: So..uh..what's wrong with him? Uh..I mean..why is he in there?
Me: He has Autism.
HOTP: How severe is he? Does he need a lot of supervision? Is he a runner? Who was his teacher last year so I can talk to her to find out if we have to hire someone special to watch him?

And that's where the conversation gets more difficult....for me that is.

I don't exactly know how to classify B's Autism. Sometimes I wish there were a scale from 1-10 that you could just rattle off.  Or a system like the National Security Warning System that has everything nicely color coded and easy to understand. I could print it out on cards and give it to people at Sunday School or when we go to public play places.

Autism is such a complicated thing. I've heard people with Autism compared to snowflakes. No two alike..all special and unique. And of course, most of us in this club, have either heard or repeated the saying, "When you've met one person with Autism..then you've met one person with Autism."

I love when people ask me questions about Autism. I find it therapeutic to talk about B's challenges and triumphs. And for those of you who know me, know that there isn't too much that is a taboo topic with me. But the question of how "severe" he is always throws me off.

B can do puzzles like no one's business. One of the people at his daycare has said to me that he does everything with a purpose. He may not play with toys like others, but he's always doing something with them. Last week I got to see him line up his animals 2 by 2 across a long table and announce that it was an animal parade. I used to tell people that he wasn't verbal, but that's not true. Truth is, he's extremely verbal. To the point that he's ALWAYS making noise (and we can't hear the TV). Sometimes he's just humming and "doot doot-ing". A lot of the time he's recounting stories from Thomas or mentioning something about Busytown that he watched the day before (and the day before...and the day before...) His memory is amazing! I wish I could recall conversations and details that he observes.  But on the flip side, we have potty issues and problems following simple commands. At 5 he can't dress himself or trace letters. And then in other ways he's just like every other kid I know. He has tantrums when he wants something. he loves Oreos and tries to sneak sweets off the counter. I'm not going to dwell on what we haven't mastered  or just doesn't seem to get, but it's so frustrating!

So how do you answer that question easily? I usually laugh and just tell people that he's a "hot mess" and that we have come a long way. It's the truth. We have come an awful long way. (And before you get offended about the hot mess part..know that I'm the biggest hot mess I know!)  I can't wait to see how much further he goes.

Easy is not in our vocabulary

B has NEVER been an easy child. I had to have a csection because he was "sunny side up". He had pyloric stenosis and required surgery on his stomach at 5 weeks old. He cried a lot as an infant. He never slept well until he was 2 and we had PE tubes in his ears. Then last year was the horrible tonsillectomy that required us to be in the hospital for a couple days because he wouldn't take pain medication. Not that I'm complaining...but things for us have just never come easy. We're still learning this lesson through attempts to potty train at 5, and even just getting him to say his name and how old he is.

Today I got a reminder of my constant lesson. I had to run in the grocery store and out quickly because he was almost out of his lactose free milk (of course he gets special milk!) and we ran out of pull-ups at the daycare. He is such a creature of habit and you think by now I would remember this but I thought, "This will take 5 minutes!" I swear that I tempt the universe more than I should.

I went in the opposite door than I normally go in since both items were on a certain side of the store. Typically, B insists on riding in the car cart..you know the monster sized cart attached to a pretend car. He almost can't get in and out of it anymore. We have our usual route around the store: through veggies/fruits, hit the bakery for the free cookie, and then through the rest of the store. Make the loop at the checkout and go back out through the same door.

But not today! And he was great! He held my hand and babbled happily while we talked about the products we were passing. He stood pretty much by me holding my keys while I paid for purchases and then held my hand as we exited. Until he realized that we went out the door on the wrong side of the store. I think my biggest flaw was just as we were walking out of the store I looked down to his eye level and said "Ben, I'm SO proud of you!! You had awesome behavior!!"

And then he threw himself on the sidewalk. He flailed yelling "NOOO GO DIS WAY!!!" People walked by as Ben is feverishly trying to get back into the store. So I took him back inside and realized what he was mad about. He wanted his cookie. I believe that he has equated that being good in the store equates getting a cookie.

We went back in..all the way to the other side of the store and got the cookie. And I made sure we went out the "right" door and walked across the store from the outside. Sometimes it's just easier to give in and bow to his routines , even if it's not convenient to me, to avoid the fits.  He can't win every battle, but this one he did.

While even the most mundane tasks aren't easy in our house, I promise you, it's never boring. I'm glad that I've learned to laugh about most things (later). I've also had to give up on vanities in front of people. That kind of goes out of the window while you're crawling after your child on the floor of a store. Or while your child is barefoot in Target and licks the floor in the check out lane. Yeah, it really stops being important then.

Life got a little busy

We haven't taken a vacation yet this year, but somehow the last month got really busy. Too busy to really blog, but it didn't stop me from laying in bed at night thinking of what I'd like to write. If only I'd taken time to write it down! I feel like we just got out of a whirlwind and I wish I could say that it was really exciting, but it was just hectic.

The month started off with B's Nana visiting from Omaha, followed by his 3 cousins a few weeks later. I love having them at our house, around B. He just gets so excited when they're around-even more of a cannonball than normal.

Then my husband's sweet Grandmother passed away. My Mom also flew in for her planned visit at the same time. Throw in his birthday party, a visitation and funeral within 3 days and we both work. So pretty much we had a never ending stream of people in and out of our house from June 5th until 2 days ago, when we had to take my Mom back to the airport. (Which was accompanied by a screaming child  some of the way home yelling "Go get Grandma!! Go DAT WAY!!" as we drove away.)

B just loves having people around. He shows off. He dances for them and has a never ending smile. He loves being read to and having someone that he can tell "Cranky fell down on the tracks" to for the millionth time.

It always amazes me at how much he likes to be around people, but just can't seem to connect with them. He will play in the vicinity of other kids, but rarely try to engage them in play. Occasionally I will see him run towards the kids when they're playing tag, which usually results in them running away from him shrieking and he gets even more excited.

Most of his interaction is saved for me (and sometimes his Daddy). He sits next to me on the couch..sometimes even right on top of me. He "pats" (which is more like light hitting) my arm over and over while watching the ipad. During meals he frequently rubs the arms closest to him or reaches out for you. He seems to long for the security of touch. To know you're right there. He craves hugs..but on his terms..when he's done, he's done. He loves kisses and we are blessed to be frequent recipients of them. One new, unfortunate action is licking. He likes to bend over and lick my knee. I'm pretty sure he's doing this for the shock value. He craves the attention he gets from doing things..good or bad..as his ABA recently explained. So I'm working on not reacting. Sounds WAY easier than it is!

As usual, more work to be done, both on his end and mine. Only another month before he starts school and whole new waves of activity start..but that's another blog for another time.

5 years old!

Last weekend/week we celebrated B's 5th birthday. It's been an ongoing festival, so now I think he gets to celebrate every day. First we started off with his very first "real" birthday party. I figure 5 is a pretty big deal and I'm so proud of him, so I wanted to give him a little fun. We went to All About Kids, which is a gym/pool/tumble extravaganza kind of place. I wanted a place where he could run around and have fun and not be on a time table. I think it's safe to say that he had a great time. He was so exhausted by the end of the play that he ended up hanging out on a slide while the other boys still jumped and bounced away.

The obligatory crying during the singing picture. 

2 of my sweet nieces helping B bounce. 

So many things will change for B in the next year. He's starting Kindergarten (though staying at the same school that he has been in for preschool.), leaving the toddler wing of the church for the elementary program, and leaving his beloved daycare (that I'm really attached to). I'm really hoping that he transitions well, but like everything, it's a journey. 

The Strong Willed Mother

Pretty much every parent I know would love the ability to be in two places at once. To not have to make tough calls and split our time between family and work..or play..or our other children. Lately, I've really been struggling with this issue. So much so that it's causing me a lot of anxiety. My eyelids have even started their dancing (which from my work background, I know is either caused by stress or lack of sleep. How about both??)

B starts Kindergarten this year and it's a full day program. I'm really excited for him to start, but it leaves us up in the air for all his therapies. Currently he's getting 2 hrs of speech, 2 hrs of occupational therapy, an hour of physical therapy and an hour of behavioral therapy. There is no way that you can keep up with all of that if you're working full time. So far it's worked because these therapists are able to go into his daycare and see him there. But everything changes once you enter the world of public school.

And it's not like I have the choice to just not work. When B was born, our schedule at work went a little crazy, but gave me Monday's off. I took advantage of those as therapy days once we discovered that he had some issues. I've contacted his therapy office but there just really aren't enough therapists that work extended/after school hours. And I was pretty much told that those who did, were full, and those patients tended to hold on to those slots for dear life.

So as of now we're on waiting lists. I know that we'll at least get one hour of OT in the fall. But it's not enough. Not when you have a child who still can't answer basic questions, who can't sit for more than 10 min, who at 5 still can't use a fork or isn't potty trained. We need more. The more that I get him now, the better off he'll be in the future. I want to ensure the best life for my child that I can. I know that's so common to all parents, but it's more of a fight for me. I want B to have a job. I want him to have friends. I want his life to be as full and rewarding as possible. Without the team of people supporting him, it's really really hard.

I keep pushing. Keep writing emails, calling people, having conversations with my supervisor (who has been great and sympathetic). I loved the term "Warrior Mother" (until Jenny McCarthy ruined that for me). So maybe I'll coin the new term: "The Strong Willed Mother". If one thing doesn't work out, I have to tell myself that something else will. There has to be another way to get this accomplished. Maybe if  I repeat that to myself enough times the worry wont sneak in. Maybe my eyelids will finally stop jumping.

Semi-wordless Wednesday

In honor of B's impending birthday next week I just wanted to share a few pictures from past birthdays! As usual, you can tell there's a them. We've yet to make it through the cake cutting/Happy Birthday singing without a meltdown. Thankfully he recovers quickly and loves cake and ice cream!!

We had a full weekend

B was in heaven this weekend. He had his Nana and 3 of his cousins here at our house. They moved to another state about a year ago. So visits with them are few and far between, but much loved. B's hyperactivity goes into over drive. He had a weekend of non stop running, being read to, playing in the pool, swinging, chalk drawing and constant snacks. When there are 4 kids in the house someone is always hungry. It seems that somehow B magically appears alongside the other child begging for food, and being so cute they'll give him anything he wants.  So until I have time to really sit down and write some bigger posts that have more meaning, I'll just share a few pictures of our fun.

(Why can't 8 yr old boys ever smile nicely for the camera?)

Happy Anniversary!

I'll take a break from talking about B and Autism for a day.

Today is my parent's 40th wedding anniversary!

Sometimes I don't know how they've done it. I'm sure it hasn't been easy. I've been married for 7 years and it's seemed to go really quickly. I wonder if 40 feels that way. I only hope that my husband and I can have 40 years together. He was 36 when we got married, so it's a possibility, though he'll be old. (I only say that because I'm 9 years younger than he is, and try to rib him about it as much as I can.)

So Happy Anniversary to you, Mom and Dad. I hope that you're blessed for many years to come and enjoy your day together!

Take the Cannoli

One of the interesting things that some people with Autism do is called "Echolalia".  Echolalia is basically a fancy word for repeating back words and phrases that you have heard. Many can repeat several words up to whole portions of dialogue. To me it's another amazing part of B's brain. Often these phrases come out when he's playing  or just talking to himself. Most of the time they have no context to what's going on around him (in my view). But I don't know if maybe something he hears or sees reminds him of what vividly lives inside his head.

Lately he has been saying "He's coming".  He says it in a slight panic. I will admit that part of me finds this particular phrase a bit creepy. It's as if he's warning us of something coming in the future.

He also will say words in response to your questions that have nothing to do with the actual question. Last night I was tucking him in and had the following conversation:

Me: "B is a boy...Mommy is a..."
(long pause)
B:" Astronaut!"

You never know exactly what you're going to get when you ask a question. He's just now getting to the point  where he can answer simple yes and no questions.  But you can be sure that he knows every word to the theme of the "Wonder Pets" and can tell you exactly what happens when Cranky falls down on the tracks during "Thomas the Tank Engine".

So that brings me to the cannoli. In case you're not familiar with this delectable dessert, it is an Italian confection that is a pastry tube filled with sweet creamy ricotta. Sometimes the ends are dipped in chocolate chips or pistachios.

B kept repeating the phrase "Eat a cannoli" over and over. It sounded like cannoli to me, but I couldn't figure out what he was talking about. After all, we had never eaten one around him, or talked about one around him. Even his speech therapist asked one day if he had been eating them because of his repeated talking about it. I couldn't even figure out what would even sound like cannoli and had given up. Until one day listened close to him watching Curious George on the Ipad. Sure enough, two of the characters were at an Italian restaurant and were talking about getting one to eat. It wasn't even a main focus of the episode, but somehow his mind had absorbed the tidbit and focused on it.

Today I set out to find a cannoli to have him try it. B is rather picky, but he has an affinity for sweets. (He's my child after all!)  We presented him with it after dinner. He went after it with gusto without hesitation! He was so pleased to be like Curious George and got to live a little bit of one of his favorite stories.

So in the words of Clemenza "Take the cannoli". And he did!

Wordless Wednesday

ABA

I know you would never believe this, but my child can be a little terror sometimes. Seriously. I'm sure that Autism only contributes a small part to some of his less desirable behaviors and a huge part of it is that he's 4 yrs old! And with a face like this.....

he can get away with almost anything. I just melt over those chubby cheeks and sweet blue eyes.

But we finally started ABA. I will say that I was a little hesitant. In my head I imagined a drill sergeant type of person that would come in and bark orders about everything I was doing wrong.  We're also not people who can always stick to an exact schedule so I worried that they'd want us to do the same things everything day in the same order and that would just NOT be happening.

I was very happy when Missy arrived. She has so much experience and I can really tell that she really likes Ben and wants him to succeed. So we're working on basic skills right now. Mostly focusing on things like potty training, and elopement (when your child runs away from you or your home), but the big push is on his destructive/mean behaviors. B has a habit of biting unfortunately, and hitting. Currently I have a nice scrape on my nose from where he grabbed it and scratched me intentionally the other day.

To me, parenting B, is just counter intuitive. When he does seeking behavior I revert into normal behavior. I gasp when he knocked off the full glass of diet coke because he was mad that I was on the phone. I've yelled. I've put him in time out. But what I didn't get was that he craved that behavior from me. As Missy explained, he wants attention, and any attention is good attention.

But what do you do when you have diet coke dripping down the wall? Apparently I'm supposed to go get a rag and, hand over hand, make him help me clean it up. He has to learn that his behaviors have consequences. Putting him in his room only works for a minute because he's happily entertaining himself within a few seconds.

So we're both being reprogrammed. I think it's going to be harder on me than him.

I have to brag

Please forgive me while I brag for a minute. But I married a great guy and since it's almost Father's Day, I want to give him a shout out!

We've been married since 2005. The first year was HARD. And I mean hard. We were both a little older and a little more set in our ways than some couples we know. It took a long time for us to really get comfortable with each other, to learn quirks, and to frankly, put up with each other. Sometimes we still struggle. He likes to talk about politics and money..I don't. I love reality shows and musical theater..he tolerates it.

But we have one big thing in common. We love B with all our hearts. He's a great daddy. The first thing he says when coming home is "Where's my boy???" I rank second in greetings, but that's ok. He gets the hard jobs, the physical stuff that I never have to do. When we're in public and we're having trouble getting B to behave or stay with us, he hoists that 53 lb boy up on his shoulders like he's a feather. Wiggling and all he manages to keep him inline.

I often struggle emotionally, and he's my rock. He's strong when I can't be. He looks toward the future and doesn't wallow in the "what could have been". He saves tirelessly to make sure that we're both well taken care of now and in the some day. The man can squeeze a penny and make two out of it. I often tease him for his thriftiness. I can't tell you the clothing I've had to throw out secretly because he thinks he can get another wearing out of it. 

He loves God. He's dedicated to trying to become a good leader for our house. He will tell you he'll pray for you, and mean it. He cares for his friends. 

He's not perfect, but he's mine and I love him for all he does. Thank you for being such a great Father to our special son!

Barren Heights

We were blessed this summer. I mean really blessed. And it all started with a chance encounter during a really hard afternoon.

B had an unfortunate accident in his britches while at church. The only place to change a child of his size without everyone seeing him just happened to be the nurses office. Fast forward to the Nurse's mom just happened to be there and saw that I was really struggling. She slipped me a piece of paper and gave me a hug and told me that we just *had* to go to this camp for families with special needs kids. I tucked it away excited and couldn't wait to look it up once we got home. Fast forward to the beginning of April when regsitration began and we were told that we could attend the first week of June.

I was a bit anxious. I have a child that likes to run, and doesn't want to do any activity that is highly structured. We weren't going to know anyone there, they might think I'm an overbearing parent..a helicopter mom. So we started the 2 hr journey toward Barren River Lake, excited and nervous. But all that melted away the second that the car stopped and we popped out. Ben took off like a lightning bolt toward the playground. He was quickly surrounded by several kids varying in age from about 9-19. They happily pushed my little guy on the swing and showed him all there was to do while we got settled. Toward evening 2 other families arrived along with the 3 host families that were already there.

And then something magical happened: we had a normal experience. I know that sounds weird to say that normal equals magical, but in our world every typical experience is something that we treasure.

The next morning was filled with a devotional time for the Moms and the Dads separately. I got to know two other women that had the same fears, hurts and fight that we had in our own lives. Sometimes knowing you're not going through it alone is what you need. Next came time for our trip to the pontoon boat with our host family. Now I have to tell you, I have a child that hates anything that is a ride. He refuses to ride the little horses/firetrucks at the store that other parents can't pry their kids off of. He hated Disneyland with a passion. But this was his shining moment. I told Dan there was no way that he would get on the raft being pulled by the pontoon. NO WAY. But wouldn't you know he made a liar out of me. As soon as the first group got done riding, he was feverishly trying to get on. He rode twice and had one of the biggest smiles you've ever seen.

I think that I learned the biggest lesson that day. I learned I CANNOT underestimate what my child wants to do. I need to learn to relax the rope a little bit and let him make his own choices. Yes, he has special needs, but he's still an individual. Capable of making his own choices and having his own desires. He is an amazing little man.

I have never experienced the kind of joy we had this weekend. By the end of our time there we'd flown a kite, launched water balloons at a barn, roasted marshmallows, gone for a walk, pulled B on endless trips in a wagon and connected with people on a really incredible, genuine level.

There is nothing barren at Barren Heights. God lives there. He breathes new life into those that need it. He gives respite and joy to hurting hearts through this place.

If you live in Kentucky, or nearby, and you know a family with children with any special needs please check this place out! www.barrenheights.com
You will have the experience of a lifetime!

Wordless Wednesday

Oh the crazy things

This actually happened a couple weeks ago..but thought I'd share.
B had Hand Foot and Mouth Disease (for the second time) so I whisked him off to the Doctor. Now I know that there's not anything that can really be done for HFM other than Ibuprofen and rest, but it just sounds SO bad. He seems a bit more prone to getting it than others because he constantly has his hands in his mouth. Not only does he touch everything, but he also has a mild case of Pica and randomly eats little things he finds on the ground. No matter how clean your house is, it will never be free of little pieces of dirt. Not to mention that the previous weekend we'd been at 2 playgrounds, church and the grocery store. And of course at the store he insists on sitting in the cart that has the car attached to it. Seriously, that is a pit of yuckiness, but it if helps us get through the store quicker without a tantrum, then we'll brave the germs.

Anyway, back to the original story....
I was busy paying B's copay for the visit and chatting for a few minutes with the receptionist. B was happily sitting in the sick side of the waiting room looking at the fish tank. Or so I thought.. I turned in his direction just to make sure he was still there when I realized that his shoes were now off and sitting in the middle of the floor. Something made me do a double take though..I turned around to see that not only were his shoes off, but so were his shorts AND his pull up. He was happily sitting naked from the waist down in the chair "entertaining himself". Not being a boy, I do not get the fascination with that. Thankfully he was alone in the lobby. There was a teenage girl there with her father, but the fish tank kept him from view.

It's things like this that keep our lives interesting. You never know what exactly will happen when you go out with B!

I'm glad you're here!

I've finally decided to give blogging a shot. Bear in mind, I've never done this before, so it may take me a while to get the hang of it. First, I'll introduce myself. My name is Megan I'm a mid-30's Mom residing in a little town outside Louisville. I have a soon to be 5 yr old son we'll call "B". He's the reason for this blog. He inspired the name, afterall. He loves to come up to you and say "So glad you're here today". Sure he may be just repeating something said to him at school/daycare on a daily basis, but I like to think that's his way of telling you he's happy to be doing what he's doing, and around you. He has lots of learned phrases that he loves to say at any time. Sometimes they make sense given the context and sometimes it's just something he's thinking in his head. Yes, it can get old, but I'm just glad that he's talking. It's been a long journey just getting him to this point.
B was diagnosed with Autism at 3.5 yrs old. We'd actually had him in Early Intervention programs through the state since he was 18 months but it really took us that long to come to the conclusion that something was just not right and we needed a definitive answer. Since this his diagnosis has been a longer journey for me as a parent. He's a mostly happy kid who loves tv, playing outside and just being a kid! His diagnosis was harder for me to accept but we've embraced it. I read constantly about Autism and definitely have my own ideas about it based on a lot of science. You wont find conspiracy theories here.  Just some funny stories that sometimes I can't even believe they're happening in our own house. I try to look back and laugh at most things..it's my saving grace.
So I hope you'll stick around and I really hope that I'll entertain you!