Tuesday, June 9, 2015

On the down hill side of the climb (this one anyway)

We are finishing week 9 this week which means we only have 4 weeks left!!  Did you hear me squeal?  As my sweet friend said, we are down to counting on one hand!!  So it looks like I will blog about every 4 weeks.  I don't know how people blog for a living.  My son is going through some of the most crucial times of his development and I can't find the words to write about it. 

Matt and I felt like we weren't seeing the same dramatic changes this year that we did last.  I took our concerns to Dr. Pete and Jessica and they listened.  Dr. Pete explained that Drew's right hemisphere was so underdeveloped you could drive a mack truck through there and see results.  This year we are getting into deeper pathways and connections and that things we think are no big deal really are or that we don't even recognize some changes. After an almost hour long discussion we agreed that Drew would probably benefit from more intense therapy so they have been challenging him more than ever!  And he is responding very well!  I love that I can go to them and voice my concerns and have them respond with a solution rather than brushing me off and saying that they are doing every thing they can.  We have been in the BB program for a year and a half with 6 of those months in the center 4 times a week.  I have become attached to the people there and know without a doubt that they are doing everything they can to help my sweet angel!  Dr. Pete has been in the center more this year and I love talking to him about the brain (especially Drew's).  I love that him and the staff at Roswell are so passionate about what they do.  I wish I could put them in my back pocket so they could help him every minute of every day!!

The past two weeks Drew has gotten 3 stars!!  2 of those were in one week!



I was finally able to get him into swimming lessons.  He loves the pool so much!  Today was his second lesson.  He swam the length (mostly) of a 50 meter pool and back.  The first video is from his first lesson and the second one is one of the first  times he jumped in without having to hold someones hand when we were swimming at Taylor's last weekend.



This picture kills me!  He looks so big and like a normal kid!  For some reason he's decided that he wants to wear his Monsters University hat all the time.  He had it on backwards but then turned it around before we went into the hotel. 

He sings all the time now.  And not just songs from movies.  He sings along with the radio sometimes too. It's kind of funny he will say "you're listening to the Message on Sirius XM."

Matt is home being Mr. Mom with Abby.   It's been really tough for him to try to juggle getting her to swimming, volleyball, church and still work full time and take care of the farm.  Most nights they don't get to sit down until 10pm.  He's had to use some of his vacation time but we agreed that it wasn't fair for Abby to give up another summer.  Besides she made the high school (gulp, did I just say high school?!) volleyball team and practices started June 1st.  She would not have been able to try out if she was down here with me.  So now she is participating in both of the sports she loves and working hard at both of them.  I am so proud of her!

I feel like all of these posts sound the same...like a broken record of gibberish!

One thing I know for sure is that this summer has renewed my resolve to bring a Brain Balance Center to Knoxville!!  We can't continue to do this every summer (not only financially but emotionally too) and I know that Drew will need to be in the program for a while! 

Again, you can sign up to receive e-mail notifications of new posts at the top right of the page.

Thank you for taking the time to read about Drew and his journey.  Please continue to pray for our family.

Until next time,


Wednesday, May 20, 2015

Are We There Yet?!

It's been 4 weeks since the last post.  I'm having a really hard time writing this year mostly because we aren't doing as much fun stuff.  I sure miss Amanda and Adeline! We are wrapping up week 6 tomorrow.  Which leaves us 7 more weeks to go!  I think I can, I think I can, I think I can...

About 3 weeks ago we went to the Center for Puppetry Arts and saw Dr. Bigelow's Tall Tales Puppet Show featuring Paul Bunyan.  It definitely wasn't as good as The Cat in the Hat. 

Monkey Joe's is still his favorite hang out!

Last week Abby came down with us.  We went bowling on Wednesday.  I saw a big difference in Drew from bowling last year.  Last year he would push the ball off the ramp and run and sit back down.  Pretty much couldn't care less.  This year he started off using the ramp and after a couple turns wanted to do it himself.  He would watch the ball go down the alley saying come on, come on.  It was so awesome to watch!  Of course that lasted about a game and a half.  We signed up for Kids Bowl Free. Kids get 2 free games every day all summer!!  If you haven't done it, you should.  Anyway, when we checked in the guy gave us another free game.  By the third game he was done!  Then it was on to Brain Balance, Monkey Joe's and an evening swim!

 
 
Our daily routine pretty much consists of morning brain games, a swim at the Y, BB, Monkey Joe's, an evening swim and more brain games!

This year seems to be especially hard on me.  I do not handle stress very well.  It turns me into an emotional wreck.  Right now I have emotional bi-polar disease (I just made that up by the way).  One minute I'm thinking I can do this and the next I'm thinking I don't what the heck I'm doing!  I'm crying all the time.  A friend asked how it was going in Sunday School this past Sunday and I couldn't even answer her.  I just started crying and pretty much cried for the next couple of hours.  It is so hard to watch him want to play with other kids but not understand that they don't want to just chase him around.  I've seen both sides of tolerance in the past two days.  A mom at Monkey Joe's kept telling Drew that boys are supposed to chase girls because he kept telling the girls to chase him.  I went over and told the mom that he had Autism and had no idea what she was saying to him.  She then asked the girls if they knew what Autism was and they both said not really.  So the mom asked me to explain it to them.  Then she asked them to go play with him.  The next day a couple were playing on an iPad while their kids were playing at Monkey Joe's and Drew was looking over their shoulder.  I told him to go play and the man said he's ok.  I told him that he is not supposed to have screen time.  A little while later he came over to me and basically told me that he hoped he didn't upset me for saying that Drew was ok when I told him to go play.  I really appreciated that.  And then the polar opposite at the hotel.  Last night I took Drew down there for a swim after dinner.  A man was down there with 2 girls.  In usual Drew fashion he heads right for them.  They don't give him the time of day.  I tell him to go swim somewhere else.  The pool isn't very big so that is kind of hard to do.  The dad doesn't utter a peep.  Doesn't encourage the girls to play with Drew, doesn't say or do anything except act like an ass!  And the same thing happened tonight!!  Those of you that know me, know that I can only handle so much of that kind of stuff before I snap!  My hope is that they will be gone when we come back next week.  

On a positive note, Drew had a great day today!  He got a star in the sensory motor room and clipped up to outstanding on his behavior chart in the cognitive room.  

I will try to post more often (I know, I know, I say that all the time).  All day long I think, oh I should put that in the blog.  And by the time Drew goes to bed I am mentally drained and just can't come up with the words!

Next week is a three day week...woot, woot!!  I'm looking forward to being home for an extra day. 

If you would like to get notifications when there is a new blog post, you can sign up at the top right of the page.  I've also added the link to the GoFundMe page Taylor set up for Drew on the right side of the page.  You should at least go read what she wrote...it will make you cry.

We really appreciate everyone's love and support.  Please keep praying too!

Until Next Time
 

Wednesday, April 22, 2015

The Sister Edition

I know that this blog is about Drew and his progress with Brain Balance.  But I feel like I should give a little shout out to his sisters!  Recently, Taylor set up a Go Fund Me page to help cover the costs of Brain Balance and all that goes along with it.  What she wrote in the description for the fund really melted my heart.  She loves her brother so much!
 
 http://www.gofundme.com/oye2a8

I know that most people are probably thinking $5,000???  Trust me when I tell you that it costs us so much more than that!  While raising any amount of money would be so tremendously helpful, it is not necessary and we will make it no matter what! 
Taylor and Drew at Easter this year 

Abby is in 8th grade this year (eeeks!)  I made it home from GA last week in time to catch her last home volleyball game that was also 8th grade night.  I think she was happy that we made it!

8th Grade night at Volleyball.  So proud of how far she has come on the court this year!
She isn't going to come down here with us this year.  Matt and I didn't want her to lose another summer.  She is going to try out for the HS Volleyball team in May and they practice during the summer and she wants to swim summer league.  She really missed it last year. This girl adores her brother and I'm sure she will miss him!
Abby and Drew at Easter this year
As for us, we are just about through another week!  We will head home after his session tomorrow.  This week seems to have gone by a little faster than last week.  We did the usual stuff...Monkey Joe's, the indoor play place, 3 different playgrounds and Brain Balance!

I'm going to wrap it up because it's late and Drew woke up at 4 am this morning!  And since we are in one room that means I woke up at 4 am this morning!  :-/

I would love to hear from you.  Also, if you would like to receive notification when there is a new blog post you can sign up to receive an e-mail in the little box in the top right!  :-)

Until next time,

Thursday, April 16, 2015

Round 2 in GA

I guess it's time to start blogging again.  Truthfully, I never should have stopped.  Drew and I have started our GA journey again for the summer.  This year we started a little earlier so that we have some summer left when we are done and we will be traveling Monday thru Thursday also giving us a little more time at home.  We are staying in an Extended Stay hotel studio this year instead of getting an apartment since it's only 3 nights.  When you say it, it doesn't sound like a long time but I'm here to tell you it feels like we've been here forever!  We have our first week under our belts now.  He has done great getting back into the routine of being at the center.  Even got his first star already.

It's been a challenge keeping him busy in the mornings.  He has been waking up around 5:30.  His sessions aren't until 2:00 on Monday and Wednesday and 1:00 on Tuesday and Thursday.  We have been to Monkey Joe's twice and went to a place that sells playground equipment. They have a showroom with a ton of play sets and a couple trampolines set up and have free open play on Wednesdays and Fridays.  We went yesterday and spent almost 3 hours there!  From there we went to BB and then to Monkey Joe's where we stayed for almost 3 hours.  6 hours of continuous play and 1 hour of therapy and you would think he would sleep in...not a chance!!

After BB today we will go home and make it just in time to catch 8th grade recognition at Abby's volleyball game!

A whole lot has happened since I last blogged on July 19th...what??  Next week I'll try to give a quick update on the past 9 months!  That should be fun for you!  :-)

Thank you all for your words of encouragement and prayers. 

Until next time,

Tuesday, July 29, 2014

Lasers, Fireworks, and Fish

Monday morning I packed the car to come to GA for the last time..Hallelujah!!  I can't tell you how excited I am to have our family together full time again!!  Drew got a star at his session for hanging independently from the monkey bars.  We went to the mall after Drew's BB session and did a little school shopping.  Drew got to build his first Build-A-Bear.  It was fairly late by the time we got home so we had some dinner and it is was off to bed!
Star for hanging on the monkey bars
Build-A-Bear
Build-A-Bear

Build-A-Bear

Train ride at the mall
The last post left off with one of my bestest friends from Knoxville coming down with her kids for a couple of days.  They got here just in time to go have dinner on Tuesday.  We went to Buffalo's Cafe where kids eat free!  Even though they live about 15 minutes away in the next town over we hardly see them anymore.  :-(  Drew acted like we see them all the time.  When they got here he said Hi to everyone of them by name.  He did call Aidan "Alien" a couple of times though.  Kari and I got to have some much needed "catch up" time on our little patio with a glass of wine.

Wednesday, I got up and made bacon, eggs and fruit for breakfast and we just hung out in the apartment until it was time to leave for Drew's BB session.  We all piled in Kari's car and headed to BB.  Kari and her kids got a quick tour of the center and then we went to Hobby Lobby to kill time.  After we picked Drew up we came back to the apartment and went for a quick swim.  Then it was time to come in, eat dinner and get ready to go to the Laser Show at Stone Mountain.  Drew got up at 4:00 am so I made him take a nap while everyone was showering and getting ready.  This is when you're going to want to put down anything you are drinking or it's going to come out your nose.  And I can only laugh at this story now because it certainly wasn't funny at the time!!  It rained for a little bit at the apartment and then stopped right before we left.  I debated on whether to bring an umbrella and decided against it because Weather Bug said it was only 20% chance of rain in Stone Mountain and I didn't feel like carrying around a huge umbrella if we didn't need it.  Turns out that was a REALLY bad decision.  As we got closer to Stone Mountain, the rain got harder.  Drew is scared to death of rain and it gives him horrible anxiety.  We pull into the park and the lady at the entrance tells us to go to the second four way stop and make a right.  Well, there were no four way stops!  We ended up at some covered bridge that went no where except to a parking lot!  And now it's starting to rain even harder and Drew's anxiety is growing.  We pull into the parking lot for the Sky Lift trying to figure out where the heck we need to go to get to the laser show.  There was a park police parked in the parking lot.  I told Kari to pull up beside him and I would ask him.  At this point, we are in the middle of a monsoon and Drew is freaking out.  Kari rolled down the window just enough for me to talk to him and I was getting soaked!  I asked him if they ever cancel the show and he said they will if there is lightning.  I asked him how we would know that and he said they make an announcement at the field where the laser show is.  Where it's POURING RAIN!!!   I explained to him that my son had autism and that the rain was freaking him out and asked if he thought they would cancel the show because weather bug said that there was lightning within 10 miles and he said it's kind of early to decide that.  I asked him if he could tell us how to get to where we needed to be.  He said follow me.  He drove us down some back roads and led us to a parking lot that was right beside the field where the laser show was.  We sat in the car and watched the radar and waited.  The rain finally passed so we got out of the car and walked to the field and as soon as we got there it started raining again!!  We took cover under one of those little mobile food carts and it had canvas flaps on the sides so we ducked under those.  Then Drew says "I gotta go potty!"  And Abby had already been saying she was about to pee her pants.  Keep in mind that it's still raining and we don't have an umbrella.  Some of the workers had just gotten back into the cart and they were taking off their rain coats.  I asked the guy where the nearest bathroom was and if I could borrow his rain coat.  I grab the rain coat and throw it over me and Drew and head up the hill to the bathroom while Abby's high tailing it in front of us.  Of course, the one he sends us to is LOCKED!!  So further up the hill we go!  We get to the bathroom and then head back down the hill back to the cart where we left Kari and her kids.  While we were in the bathroom I overheard a lady ask her friend if she thought they would cancel the fireworks because of the rain.  Ummm...fireworks??  I didn't read anything about fireworks.  Drew HATES fireworks!!  Luckily he didn't hear any of that conversation.  We bought tickets on-line for the terrace but we still had to go to guest services to convert them to tickets for the cart.  It finally stopped raining so we headed over to guest services trying to dodge ankle deep puddles.  Kari took her kids to the bathroom while me and my kids waited in line.  While we were waiting in line I noticed Drew getting antsy and then he sat in the floor.  I told Abby to take him to the bathroom and she said he doesn't have to go to bathroom and I said yes he does, look at his body language.  I waited in line for a while and had a feeling that we were too late getting Drew to the bathroom so I decided to get out of line and go check on Abby and Drew.  As I'm walking to the bathroom Abby calls me and said you need to get in here it's bad.  I told her I was on my way.  When I got to the bathroom Drew had a pretty good diarrhea accident.  Kari was headed to guest services to find us and we must have missed each other.  So Abby went to go find Kari and they were headed back to the bathroom looking for us.  Kari came in and told me she was going to go take the kids to Lee and see if Jennifer had any wipes.  When she told the kids the plan they started freaking out wondering how they were going to get their popcorn, etc so she sent Abby back into the bathroom to get the print out for the tickets.  To get the tickets you have to show the credit card you used online and a photo id.  So I gave all of that to Abby and told her it wasn't going to work but they could try it.  So Kari, who is blonde, takes my id, I have dark brown hair, to the counter and gives it to the guy with the print out.  He looks at my id and says cute picture, different hair.  Kari replies, "Well which one do you like better?" And he says "Oh, you ain't playing me like that, but if I'm being honest I like the dark hair better."  So he gives her all of our tickets and she takes the kids to Lee so they can get all of there goodies.  She has Abby call me to tell me that Jennifer did not have wipes what should Kari do?  I told her there's not much she can do except see if they sold wipes in the little store that was there.  By the grace of God, Drew's shorts stayed clean.  I had already made the decision that his underwear were an unfortunate casualty and were going in the trash.  Now I just had to figure out how to get him cleaned up because I had given up on finding wipes.  I will spare you the details of that and just say that I got him all cleaned up and he went commando the rest of the night.  We finally get through that ordeal and get to our seats.  We didn't have much time before the show started so me and Kari went to the cart and got all of our goodies.  The girls hit up the cart a couple of times.  We were getting our $15 worth!  Drew is still having major anxiety but is handling it pretty well.  At 9:30 the show starts...WITH FIREWORKS!!!  At this point, I just wanted to shoot myself!  The laser show lasted 45 minutes with fireworks interspersed throughout the show and ended with a grand finale of fireworks.  In the end, Drew handled it very well and I was very proud of him!  Earlier that day he was having a meltdown at BB and I watched Jessica rub his left hand and up his arm.  She had told me to do this before but I never really witnessed how it's done.  It's amazing how fast it calmed him down.  So I spent most of the 3 hours applying pressure to his left hand and up his arm.  We got back to the car and piled all of our loot in the back and counted 9 bags of popcorn!! We got back to the apartment around 11:30.  I liked the laser show but I thought it was kind of random.  When we got home and Abby came in to say to good night to Drew she was wearing a hoodie.  For some reason he wanted to wear one too.  I happened to have one of mine hanging in the closet so he put that one on.  He fell asleep wearing it. It was so cute!!  Our plan for Thursday was to go to the aquarium at 10am.  I told Kari after getting home that late and Drew getting up 4 am that morning I wasn't going to wake him up in the morning.  He was going to be the alarm clock.
Our sweet babies at the Stone Mountain Laser Show

Abby and Presley

The popcorn loot!

Twinsies!!

Now that's a whole lot of cuteness right there!!

Drew woke up around 8:30 Thursday morning and that's when we all started to get going.  Everyone had to get ready and we ended up not leaving the apartment until around 11 am.  We decided we would stop at Chick-fil-a on the way to the aquarium.  And thank goodness we did because 3 snacks and a drink was almost $20 at the aqaurium!  We made it to the aquarium without incident.  Of course, I didn't leave the house without a change of clothes and lots of wipes!  The Georgia Aquarium was awesome!!  If I lived in GA I would totally be a member and go all the time.  Drew and the other kids loved it.  Drew watches a show on Disney called the Octonauts.  He has learned a lot about under sea creatures from that show.  It was really neat for him to see them in real life.  His favorite is the Whale Shark.  The 4 at the aquarium are the only 4 in the US.  He gave his teacher a little lesson on the whale shark during the last school year.  They were learning about animals under the sea and their habitat.  She asked each of them what their favorite was and he answered the whale shark.  She told him there was no such thing as a whale shark.  It was either a whale or a shark.  Remember, they are not found in the US.  He kept insisting and when she went to write it on the board she said ok Drew pick one, the whale or the shark.  He said whale so she wrote whale on the board and when she was about done writing whale he yelled "And Shark".  One of the aides said we better look this up because you know how he is.  Sure enough they look it up and read all about the Whale Shark.  They got a good laugh out of that.  I just love his teacher and aides.  He also got to see a giant spider crab that he knew about from the show. Drew wasn't crazy about the dolphin show.  It was dark and kind of scary.  And really, a man singing about a treasure and sea monster isn't really that interesting.  But he did like the dolphins when they were performing.  In fact, when we were swimming in our "pool", Matt asked him what he saw and he didn't mention the dolphins.  So I asked him what about the dolphins?  And then he acted like a dolphin in the pool.  He was spinning around and trying to jump in the air.  It was really cute.  The aquarium closed at 5 which is when the dolphin show ended.  So we are now leaving downtown Atlanta at 5:00!  Probably not the best idea we had.  You're supposed to take your parking ticket with you and pay before you go back to your car.  Well, since the dolphin show ended at 5 and they basically shuttled you out the door when it was over, there were masses of people waiting by the elevator.  I had the brilliant idea to take the stairs and pay up on our level.  Well, I was wrong!  There was no pay machine on our level.  So we get in the car and hope that we can pay at the gate.  The girls spotted a machine on one of the levels on the way down, so Kari pulled aside, I jumped out of the car, paid for parking and away we went...to sit in traffic for an hour and a half.  Before we left for the aquarium Kari said she needed to get gas.  I told her we could get it on the way back at the station right outside the apartment and then she would be full for her drive home.  Well, I didn't know just how low her gas gauge was.  So then we start joking about running out of gas in the middle of rush hour in Atlanta!  Once we got to 575 we got off before our exit to get gas.  By the time we got home we were all so ready to be out of the car!  We had dinner and then Kari and the kids left to go back to K-town.  :-(  We had so much fun while they were here.  Kari and I laughed the whole time.  Drew and Aidan played so good together!  And the girls...well, they're pre-teen/teen girls! 
Whale Shark


Drew and Aidan

Abby and Madison

Giant Spider Crab





In the tunnel that went through the penguin exhibit

Tunnel in the penguin exhibit

Beluga Whale


Drew and Abby in front of the Great Barrier Reef replica

Beluga Whale
Of course we had to bring home our own Whale Shark!

Today we went to see Planes Fire & Rescue, had lunch, went to Monkey Joe's, went to BB, came home and went swimming. 

Bullets from the week
  • He turned the flashlight on my phone and was playing shadow puppets on the wall
  • He climbed into the window sill at the apartment
  • After going to bathroom, he ran into the living room with no pants on and I called after him and told him to come back he can't just go running around naked.  He came running into the bedroom laughing and said "I'm so funny!"
  • While I was giving him a bath one night he said "Mommy, I want to go in Kari's car and go to Target."
  • This weekend while we were home and cuddling in the chair he said "I want to go to school." I asked him why and he said "To see Tony."
  • Matt said over the weekend that he noticed Drew's speed while they are playing has gotten really fast.

We have BB tomorrow, BB assessments Thursday, Matt comes down Thursday to load up the apartment, Drew has his final in center BB session on Friday and then we drive home to TN for the last time this summer!!

Until next time,