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.