Being Thankful

Very happy to be able to say that Korban's new medicine is working very well for him. It's a very small dose of a beta-blocker called Propranolol being used to treat his anxiety. He's more relaxed and interactive, and also MUCH less aggressive, with no negative side effects like acting drugged or whatever. Very big praise report!  We have had the best weekend we've had in a very long time. Friday was his infusion and while he still didn't like getting his IV, it was much easier than it usually is. He still cried and screamed a lot but he didn't get sick beforehand like he often does due to nerves. We only had to hold his arm steady and keep him still rather than laying him back and having to hold him down like we normally do. It was far from perfect but it wasn't the battle we normally have to fight. He fell asleep and had a nice little nap while getting "infused." 

Love that sweet face!  

He woke up before the infusion was over but was in a good mood and was ready to eat. 

Selah played and watched tv while waiting on her brother to get finished. The volunteer who does the face-painting was there and Selah was all excited to see her. She had her mind all made up--she wanted two apples, one red and one green, painted on her arm. 

It turned out so cute!  I especially like the worms. :)

After Korban was finished, we headed back across the street to the Ronald McDonald House. 

Here's Daddy carrying Selah and her much beloved Hundley. 

We had lunch at the house. There was a surplus of Easter candy, and of course it caught Selah's eye. She's mine, after all. 

She chose this candy which looked like a rubber ducky. She loves ducks and it really was cute. I'd never seen anything like it. 

At least she shared: 

She ripped off the duck's head and passed it on to Korban. (After taking a bite to make sure it tasted okay first. 

I'm sure she wouldn't want to give her brother sub-par candy.)

Then she tore into his tail feathers, saying "bye-bye, butt!" Oh, Selah. 

After lunch we headed to the Birmingham Zoo. The Ronald McDonald House has a membership arrangement so that any of their residents can go to the zoo for free. We love the zoo so much, so this was a big treat for us. The weather was just lovely and Birmingham has a very nice zoo. We really enjoyed ourselves. 

We went to the reptile house first. (Of course we did!). See the tortoise in the picture above?  He's sort of flat and camoflauged on the ground there. He's actually called a pancake tortoise. See?

This completely tore Selah up because she thought it meant he liked to EAT pancakes. I get a really lovely image of the zoo staff taking the tortoises on a field trip to IHOP if I think about that for very long. 

We were walking around looking at a different things, and Selah started trying to pull us down this dead end alley. We told her no, that there wasn't anything to see down there, but we were wrong. This was what Selah had spotted:

A big peacock in all of it's glory!  

Selah sidled up for a photo op. She was probably trying to figure out how to get that thing in our van!  ;)

Both kids even got to pet it!  Niiiiice peacock. 

Selah also got to see her other favorite bird, the flamingos. 

Since she's Selah, she also did some climbing. 

Hang on, sister!

Korban went to visit the gorilla. That's his favorite animal there. The gorilla was totally chillin'--enjoying the sunshine. 

Look at him--all laid out. I love the arm in his face. So funny. 

He did sit up and move around a little bit while we watched. Very pretty animal. 

Korban loved watching him. 

We had a blast at the zoo. This whole weekend was great, and I want to write about all of it but this post is already long, so I'm going to have to break it up. Consider this part one. To be continued! 

Service With A Smile

Korban turned 8 today!   I know it sounds trite, but he's growing up so fast. I can't believe 8 years have passed since that first time I got to hold him. A LOT has happened in those 8 years, and I'm proud of how far we have come. 

We started the day off headed to Southaven for two dr apts for Korban. They were at the same clinic--the group that oversees his medical care and provides behavioral therapy for him. 

The first apt was actually an intake session for his upcoming psychological evaluation. Nothing big, it was just time to get an updated one and I'm excited to see where we stand. So Korban basically got to play with some cool toys while me and Brad talked with the doctor.  Me talking to someone other than Korban usually doesn't end well.  Today was no exception as he punched and scratched me a few times.  Brad had to forcefully remove Korban from both rooms at some point even though both doctors attempted intervening and tried to make him happy, it just didn't last.

Then we met with his medical doctor. We decided to try a beta blocker to help with his anxiety since none of the traditional anti-anxiety meds have helped at all and some have made him feel worse. PLEASE pray this medicine is the "key to the kingdom" so to speak and that he has no negative side effects from it. We are beyond ready to see our little guy get some relief from his horrible anxiety. It's so frustrating to try and try to help and NOTHING works very well. I feel so bad for him....

Along that line--we are also pursuing another avenue to help relieve Korbans anxiety and other issues. Very exciting news:  we have been approved to start training for a service dog!

We have been thinking and praying about this for a long time--as in years. We started researching service dogs when Korban was about 5. It's not just something you decide to do and then go pick up a dog the next day. To get an actual service dog, there is a lot of training and fundraising involved. But I'm thankful to say the pieces are starting to come together for this.

Brad and I both put out some feelers a few months ago. I talked to some of Korban's therapists and one of them knew a guy who knew a guy, and the rest is history. There is an organization called Retrieving Freedon that has a branch in Senatobia, MS, which is about 45 minutes out of Southaven. That was where we headed as soon as we finished Korban's appointments this morning. 

Well, ok, we stopped and got lunch first. ;)

I was so excited to get to go meet the dogs and their trainer!  They mainly train dogs for people with autism and veterans with PTSD. (Said we would be surprised at how similar the two groups of people are. Stop and think about that for a minute.)

We tried to explain to the kids a little bit about what we were doing without them getting overly excited and thinking we were bringing home a dog today. 

Mr. Dwyer, one of the owners of Retrieving Freedom, was so nice to us. He answered all of our questions and was so good to our kids. 

We did get to meet some of the dogs. Some of them have already been matched with someone and are being trained to work for that person. It's not like we just go in there and pick out a dog. The dog and the boy--they will pick each other. Which is how it should be. 

Korban wasn't afraid of the dogs today but he wouldn't pet them either. Mr. Dwyer said not to worry and not to try and force it. It takes a while to find that bond but it will happen. 

All the dogs they have are labs or golden retrievers. I was in the floor loving on a beautiful lab today and he leaned over and licked me right on the nose. I didn't mind at all, but Korban raced over and started wiping my nose off and trying to "clean me up."  It was very funny. It also seemed backward to me--the kid trying to wipe down the mama. I guess I'm just lucky Korban didn't spit-clean me, right?  

I didn't get any pictures while the dogs were out with us--I was too excited. But I snapped this sweet shot of Selah and a pup named Bruno. 

I love how he's looking at her!  It looks like they are having a conversation. Shoot, they probably were!

Today was sort of our interview.  The trainer said he has a good idea from today of Korban's energy so that he can be looking at dogs to match him.  We were expecting for there to be a waiting period before we could start but he said "we've started today" and that is so cool.  Next we figure out what timetable works best for us and then we will start meeting dogs and training. It's a time-consuming and expensive process but we are looking forward to this journey.  Much support will be needed as we move forward and we know we have the community of family and friends to make this happen.

Mr Dwyer gave Korban this hat today as a birthday present, we can add it to his collection.  Korban wouldn't wear it long enough for a picture but I just had to show off this logo design.  The dog in between a puzzle priece and American flag.  I love it, it's so perfect.

So, you ask, what exactly a service dog does for a child with autism--it depends largely on the needs of the child. 

1. For us, we are looking for something to help ease Korban's anxiety, especially when we are out places. We can't just stay at home all the time and Korban actually likes to go places but it's hard on all of us. I wish people knew how brave he has to be to do all that he does. I'm his mom, and I don't even fully understand what it's like to live in his world. 

2.  Tethering. When we are out and about, the dog would wear a special vest and would be hooked up to Korban with a special leash. Bolting and wandering is a huge, scary problem for the autism community. Korban is an intermittent bolter. Which is good, because he doesn't do it all the time, and bad because I get lulled into a false sense of security thinking he's finally over it and BOOM he's running out to the middle of a crowded parking lot. I live in fear of losing my focus for just one second and something horrible happening. It would bring me an incredible amount of peace if I knew I had a relatively large and strong dog who was specifically trained to stop my sweet boy in his tracks if necessary.  Korban has gotten stronger and often jerks and pulls away from us without realizing the consequences.  Korban has to have time to process a comand or directive and sometimes there's not time for that processing period.  When you need a reaction to happen quickly, it's just not going to happen with him so it has to be done for him.  Peace of mind!  

3.  Grounding. This ties in with tethering. Kids like Korban have tons of sensory issues and often don't have a good sense of where they are at in the world. This leads to anxiety, stimming, and behaviors like Korban frequently engages in to orient himself, such as bouncing off of people (or objects!) grabbing at people, etc. In other words, the dog would bring Korban a sense of security being attached to him, he would know to move when the dog moved, and so on and so forth. 

Honestly, I just love the thought of another set of eyes looking out for him. I'm very hyper vigilant with both of my kids, but I have a horror of missing something. Not to put too much responsibility on the dog of course, but I simply adore the idea of Korban having a friend who will love him unconditionally, without judgment, and who is specifically trained to watch out for him. How cool is that?

One of the dogs we met today is being trained for a veteran. The dog showed us how he could turn lights on and off with, open the refrigerator, and even fetch a bottle of water on comand. Seriously one of the coolest things I've ever seen. The man he is going to has PTSD with severe nightmares, and the dog will sleep with him and is trained to wake him up when he starts having a nightmare and can even go turn on a lamp with a special foot pedal. What a friend!  My mind was blown and it just makes me teary eyed to think about. 

It was such a blessing to be able to go there today, especially on Korban's birthday. Like I said, it's just the start of a very lengthy process but we are happy to be taking the first step. Time frame?  We could have a dog in 18 months, less if training and fundraising goes well. These dogs are amazing. Check them out for yourselves. www.retrievingfreedom.org or look them up on Facebook. I'm a hopeful mama!  

After that little adventure, we headed to Incredible Pizza at the request of the birthday boy. It wasn't crowded and we really enjoyed ourselves. 

Great atmosphere!  Korban was super excited to see all those cool balloons. 

He loves playing games!

Both my kids are crazy good at Ice Ball!

"Outta our way, people!"

"Beep, beep!"

Selah and Daddy playing a game together. She pouted so bad because she thought he won!  (She's a sore loser. The only game she knows is "I Winned.")

She looks disappointed--probably mad the giant frog isn't real!

Happy boy!  Happy birthday!

How amazing is it that we get the approval to start this process on Korban's birthday?  That is just too cool! God knows what he's doing and in his timing it is all just perfection!

Boys Night Out, Girls Night In

Yesterday was a not so good day. By "not so good," I mean biting, hair pulling, standing on the kitchen table, whining, screaming, pooping in the floor, terrible, horrible, no-good, very bad day. Well, I can't honestly say it was no good. There's SOME good in every day, and I've had days a lot worse than yesterday. But it was very trying on patience and I fell into bed exhausted last night praying "Please let tomorrow be better!"

And it was!  Today was busy, but I'm tired in a good way tonight. This is how my day went:  Dropped Selah off at head start, took Korban to school to see his teacher and physical therapist, went home and did a few things there, went and picked Selah up, took both kids to play therapy and then back home for ABA therapy. (Yes that's a lot of therapy but most days aren't this full and we are just very thankful to be getting it!)  

When Brad got off work he and Korban headed off to the Crossroads Arena for the Rebel Road Trip. It's a dinner and meet and greet with the Ole Miss football coaches and of course my boys were very excited about it. 

See that happy face?

I love this picture!  This is Korban and Brad with head football coach Hugh Freeze. He is seriously a class act and I'm glad he's our coach. He was very nice to Korban and told him he looked like he was ready to wrestle. Brad said when he got up to speak, he was like "Where's my buddy Korban?" They were standing in the back because Korban had gotten overwhelmed and Brad was walking him around, but the coach called him out!  How cool is that?  Nice man. 

They brought Selah home a surprise. :)

And here's Korban's.  Love the fact that Coach Freeze put Bible verses on there. 

While our boys were doing their thing, Selah and I were enjoying some girl time. Of course, we felt the need to make something yummy in the kitchen. Selah loves to help in the kitchen. She even "reads" recipes and tries to boss me around. Ha!

Tonight we made two different kinds of fudge. The first kind was supposed to be healthy, so that's why we made two. One healthy, one not so much. Selah is so much like me when it comes to sweets!  Cracks me up. 

"Hello, lover."

"Prepare to die, fudge!" 

OM NOM NOM NOM NOM

Ever had one of those moments?  

(And even though the fudge was "healthy" I promise I didn't let her eat all those pieces on her plate. She didn't even try to eat that much. It really was good though! ) 

Here's the link with the recipe if anyone is interested. I'm storing mine in the freezer. So good like that!  

www.seedsofrealhealth.com/healthy-sugar-cookie-fudge-

recipe/ 

We also made a chocolate chip cookie dough fudge. It's still setting up in the fridge and I haven't even sampled it yet, but it looks fantastic. 

I brought out a new sensory bin in honor of spring. We used coffee beans and plastic carrot containers from Dollar Tree. She loved it. 

She really enjoyed scooping the coffee beans into the carrots and "planting" the carrots. 

It also lead to an interesting conversation.  Selah planted some of her toy animals in the garden and then laughed because animals don't grow in gardens. I asked her if she grew in a garden and she laughed and said "No, I grew in God's heaven."  Awww. She amazes me sometimes. But it's not always that easy. She wanted to know how she got here after that and I told her she grew in my belly. She shouted "Gross!  Did you EAT me?!?" Like I said, not always that easy. ;)

So, today was much better than yesterday and tonight we enjoyed splitting the kids up and having some one on one time with them. That's so necessary sometimes. Now mommy and daddy just need to carve out time for a date night!  ;)

Thanks for noticing me...

I've always loved the Winnie the Pooh cartoons. As a kid, Eeyore was my favorite and I loved it when his friends included him and he said in his sad/sweet voice "Thanks for noticin' me..."

I've spent much of my life trying to AVOID being noticed. I didn't want to do anything to rock the boat, or create drama, or (heaven forbid!) make everybody look at me. 

But now that I'm a mom, particularly a mom of a special needs child, we can't go anywhere without being noticed. Sometimes it's good, sometimes it's bad, but we definitely don't fade into the woodwork. 

Today after Korban's infusion we made our usual trip to the McWane Science Center, per Korban's request. We got there a couple of hours before closing, expecting the crowds to be thinned down. Boy were we wrong!  I forgot it was Spring Break week in Alabama, since ours in Mississippi was a couple of weeks ago. Exhibits that are normally pretty empty were packed with people. That's never an optimum condition when you have small kids, but when you add autism to that mix, it's nearly impossible. 

I was grateful that we were "advertising" today. Korban had on his t-shirt that features a weight lifter and reads "Autism: Not For Wimps!" So if people were wondering about us, they wouldn't have to look much further than his shirt for an answer. 

We went into the play area and Brad was watching Selah on the slides while I took Korban to the water table. I was nervous because there was barely a place to squeeze in and Korban doesn't always play well with others, you know...  I reminded him to use nice hands and share. He went up to the table and said "Can I play?" So sweet. He was definitely the oldest kid there and while most parents just stood back and watched their kids play, I hovered anxiously over mine. 

There was one other parent with their child at the water table, and he noticed us. I'm not sure if he saw Korban's shirt, noticed how closely I was watching him, or if he recognized Korban's awkward attempts at traditional play, but he knew. Living on the autism spectrum makes you more sensitive to other people, and I say with relative certainty this man's adorable little boy was on the spectrum as well. 

The man went out of his way to speak kindly to us and be friendly. When he spoke to Korban, I gently tilted Korban's chin-up so he could answer him, and his response to Korban was what made me sure he knew our struggles from personal experience. When Korban locked eyes with him, the man humbly said "Thank you for looking at me."  That's what sold me--unless you've loved a child who struggles to make eye contact with you, you don't realize what a GIFT that is. And this dude got it. 

I spoke to his sweet boy but he didn't glance up at me. He was younger than Korban, and Korban wouldn't have looked up at that age either. I wanted to offer some kind of encouragement, since the man had been so kind to us, but I didn't get the opportunity. Another little guy who was playing opposite Korban slung a water toy and gifted Korban with a face full of water. Seriously, it was a small water toy but it looked like ten gallons of water came out of it. Water dropped off the brim of his hat and ran down his face. His shirt was soaked. Now, this would have been mildly disconcerting for most people. While you don't expect to play at the water table and not get wet, this was a lot of water. But what would've been an inconvenience to most people was devastating to my son. 

Everyone noticed us then. It seemed like the whole area drew a collective breath and waited to see what would happen. I knelt down and grabbed his hands and tried to calmly tell him we could dry off. He cried and tried to head butt me in the face. I dodged and tried to lead him away. A nice lady tried to help us get to the hand dryers. Korban slapped at her back. I apologized while I hauled him into the nearest bathroom, which thankfully was a private one. 

I was thankful because that meant there was no one there to notice what happened next. There was no one there to stare while he screamed and thrashed and pounded the walls with his fists and spat in my face. Meltdowns are hard. Meltdowns in a public place are worse. Meltdowns with an aggressive child are painful. Literally. 

But, thank God, it didn't last all that long, although I felt every painstaking minute of it. I imagined there would be employees on the other side of the door waiting to kick us to the curb, but there was not. Just another woman with a little boy who actually needed to use the bathroom to potty and not as a private meltdown space. 

We left. We were ok. Maybe next time will be better. But it could've been worse. I always remember the people who are kind--it means so much. Like the man who thanked Korban for looking at him, and the woman who tried to help us and was nice even though Korban hit at her. 

You know that quote that says "Be kinder than necessary. Everyone you meet is fighting a hard battle."  So, so true. Even though I never wanted to be the person being noticed, to those people today, thank you for noticing. Thank you for your kindness. May I be the smiling face in the crowd and the one offering grace to others in their time of need. 

Tishomingo State Park

We closed up Spring Break week by going to Tishomingo State Park. I hadn't been since Korban was just a baby, which is kind of shameful. The kids were super excited and my mom got to go with us too. (Brad had to work. The kids were bummed. I'm gonna assume Brad was too.) 

I packed a big, yummy picnic lunch. The weather was pretty today but the wind was really kicking!  As in, my plate of Chinese coleslaw blew away. Which was a shame, because I really like that stuff. Would've been a good day to fly a kite. Pity I didn't think of that beforehand! 

Anyway, the park was beautiful and you guys already know I think my kids are beautiful, so here's some pics: 

Here's Korban keeping watch over our picnic groceries. He was Bob the Builder today. :)

Here's the kiddos at the end of the swinging bridge. For those who may not know, Tishomingo State Park has a beautiful old wooden swinging bridge. It's very lovely but I didn't get any pics of us actually on it because 

A) The only barriers between you and a very steep drop into the water is widely-spaced steel cables that a child could easily slip through so I was busy making sure that didn't happen and suppressing a panic attack. ;)

B) Halfway across, Korban decided he wanted to toss his beloved hardhat into the water; and I couldn't let that happen because as soon as he threw it he would want it back and would attempt to go in after it. Pause in middle of large swinging bridge for mini-meltdown. Squelch panic attack and move on. 

C) Right before we set foot on said bridge my mom told me that she had recorded an episode of Dr. Phil for me in which Dr. Phil fixes a kid with behavioral problems--turned out all the kid needed was for people to never raise their voice at him or spank him. He didn't have behavioral problems, he was just scared of people. Had to take a mental time-out and file that one in my imaginary filing cabinet right next to the advice from Dr. Oz. The drawer has a label that says "Things Melissa Gives Zero Cares About."

Ok, so no pics of the pretty bridge. Let's move on, shall we?  ;)

Korban looks like he's doing some serious thinking, doesn't he?

In case anyone is wondering, Selah's toy is a stuffed Dachsund a friend gave her. She adores it and named it Hundley after the Dachsund "lobby dog" from Curious George (her current favorite cartoon.) Hundley seemed to enjoy today too. 

Selah walked across this log like a circus bear...

...while Korban took a safer approach. 

"Let's go this way!" 

"Are we lost?"

Selah is always happy to have sand to dig in. 

They are investigating a leaf with a hole in. Selah found it and told Korban she thought a hungry caterpillar had been eating on it. 

These little bridges weren't nearly as scary as the swinging bridge, which is why I have pictures of them. ;)

This picture sums us up pretty well. I'm talking to Korban and check out his expression. He's like "what in the world is she yammering about?  Ha!

Korban found a swing, which always makes him happy. 

Selah built another volcano. 

We even found a bear!

Giddy-up!!!

The kids and Nana. 

Me and my babies. 

We give today a big thumbs up!

Updates

We are back in Birmingham for a few days. Korban and Selah both had a check-up with the immunologist. (Selah has to be checked periodically for the same immune deficiency Korban has. Her immune levels were low the first time they checked and normal the second time so we are just keeping a check on it.) 

We were anxious to talk to the doctor about Korban because the nurses at the infusion clinic had mentioned to us recently that she was thinking about taking Korban off the infusions for a trial period this summer. While it would be great to not have to get the infusions every four weeks, we can always tell around week three when the infusion starts wearing off. He gets really tired and congested. So we were naturally concerned about what he would be like with no infusion. 

It had been a year since we had seen this doctor and there were some good things to report. Both kids have done so well with their asthma this winter. Korban especially has come such a long way. All those middle of the night ER visits for the really bad asthma attacks were so scary!

We discussed Korban's infusions first. She explained to us that some people "grow out of" the immune deficiency he has (it's called hypogammaglobulanemia) and some people have to take treatments for the rest of their lives. You can't really tell until you stop the infusions for a couple of months to see. But considering what we were telling her about how he feels the week prior to his infusion she decided to give him another year on infusions and then try for a break next summer when he is older. She also wound up increasing his dose a little but to see if that would help. 

We talked about how hard it is to hold him for the nurses to get the IV in and how upset he gets. She prescribed a small dose of a medicine to help him calm down and relax prior to his infusion. It's like what some people get before they go to the dentist or whatever. His infusion is in the morning, so please pray this helps!

I figured Selah would need bloodwork, but the doctor actually said since hers was good last time we would hold off on that for awhile. So that was good. We talked about Selah being sick a good bit lately and see seemed to think that was due to her starting at head start and being exposed to more germs. 

We discussed allergy testing for both kids. Skin tests are generally the best but we all thought that would be too tough with Korban. They are going to draw blood tomorrow during his infusion and he won't even know it. Selah, however, had the skin test. She was nervous about it right before they started and Brad had to take Korban out because he was screaming much worse than Selah. She did fine with the actual test. Worrying about something is usually worse than actually doing it!

This is what her back looked like afterwards: 

I was really worried about that big spot on the bottom--I just knew it was going to be pet dander, since she loves animals so much. We would be destined to a home full of frogs and lizards!  Ha!  Fortunately it wasn't. That big spot is actually a control spot of histamine and it was good that she had a response to it. She didn't test positive for any of the environmental allergens they tested for. Big sigh of relief!

Here she is waiting for the doctor to come in and check her back. She was very happy with the stickers they gave her!  

So we are done with that appointment and feel that it went well. The kids see her again in six months. After we left there we went to fill Korban's prescription and pick up a big blessing for our family. 

When we got to the Ronald McDonald House late last night there were fliers up everywhere saying that the circus was in town and they had ticket vouchers.  I picked up our vouchers this morning and we just redeemed them for tickets to the 7:00 show tonight. 

The kids are going to be blown away. I can't wait to see their faces!  Just pray that Korban's anxiety doesn't flare up and cause problems. He's been wanting to go to the circus for ages. He's walking around right now saying "Ladies and gentlemen...boys and girls of all ages!" Makes me smile. Also, might also need to say a prayer Selah doesn't try to make off with one of their elephants. Even though she's probably not allergic to them, I'm pretty sure we don't have room for an elephant. ;)