Hold On Tight!

Welcome to the Drew Roller Coaster!  This week has been full of ups and downs!!  

I wanted to post on Tuesday because I didn’t want to leave the blog on a negative note.  But obviously that didn’t happen.  This week has kicked my butt!  I had to take my van to the shop on Monday and they had to keep it overnight.  When I picked Drew up from school on Tuesday I still didn’t have my van.  He asked me “Did you find mommy’s car?”  I told him no but we were going to find it right now.  When we got to Honda and walked into the service bay he announces “I’m here!”  I think that’s his new thing because he did it again when we went to CarMax on Thursday.  I wish you could hear him say that in his sweet little voice…so stinkin’ cute!  He had a much better day at school on Tuesday.  Tuesday’s screen time was 30 minutes.

He was in a good mood again Wednesday morning.  I walk him to his classroom every morning and hang out until the announcements are over.  He was sitting in the floor reading his Transformers book and asked Smurfann “Is today Mr. Townley?”  Mr. Townley is the sassy gym teacher from Australia and the kids love him!  He is a great tool to get Drew to do what you want.  It was gym day and I’m not sure if he knew that or it was a coincidence.  A little later that morning, I got a text from his teacher, Ms. Gooch, that said “I just got schooled by your son.  It’s a hoot…as always”.  She called me a little later to tell me what happened.  The unit they are reading this week is about animals in the ocean.  She wanted them to pick an animal they liked and give her 3 facts about it.  He picked the Whale Shark.  She said “Drew there is no such thing as a whale shark.  It’s either a Whale or a Shark.  You need to pick one.”  He said “Whale Shark”.  She said this went on a couple of times.  She went to the board to write it down and she said “Drew which one do you pick?”  He answered “Whale”.  So she started to write Whale on the board and about the time she was finished writing Whale he said “And Shark”.  She said “Ok, if you can tell me one fact about the Whale Shark you can pick that.  He said “It is gentle”.  So one of the other sweet aide’s in the class said “We should probably look this up”.  So she looked up Whale Shark on the internet.  She said “This says the Whale Shark is the gentlest shark in the ocean.”  So needless to say he got to pick the Whale Shark.  He learned that from watching The Octonauts on Disney.  At least he’s getting something from screen time.  

Matt will sometimes take Drew and Abby with him to feed our horses that are in the field at Mr. Farmer’s house up the road.  When I was getting him dressed for school one morning he looks at me and says “Can we go see Mr. Farmer?”  That same morning I went outside to start to the car and when I came back in I said “It’s cold outside”.  I went to get him dressed and my hands were cold and he says “Mommy’s cold.”

When we got home from church on Wednesday, I had Drew do his Interactive Metronome exercises and then he went off to play with his toys.  About 8:35 he started to head upstairs.  I assumed he was going to my room for his 30 minutes of screen time before bed.  I leave the TV unplugged during the day so a few minutes later I went upstairs to plug it in for him.  I found him in his room with the door shut in his bed all tucked in with his big headphones on and reading his Transformers book.  So he had NO screen time on Wednesday.

Thursday was more of the same in the morning.  I even told his teacher and aides that I felt like he had come back better than before.  Well, I jinxed that!  Later that morning I got a call from Ms. Gooch.  I could tell by the tone in her voice that it wasn’t going to be a funny story like the day before.  Drew had scratched another little boy’s face with his pencil for no apparent reason.  Not that any reason is acceptable for that, but it made it even more confusing as to why he did it.  I think he was ok the rest of the day at school.  But that night he started to get really grumpy.  He wouldn’t eat anything but pasta and lately he hasn’t been doing that.  He wanted to be outside on the trampoline and I couldn’t blame him but I needed to fix dinner and couldn’t go out with him and Abby was at volleyball practice.  So, I’m trying to keep him in the house every 10 seconds while trying to cook dinner at the same time.  Then a little while later my neighbor calls and tells me my dogs are out and down the road.  Ugh!  I piled the kids up in the car and went looking for them.  We didn’t find them so I just had to hope they came back.  We were out front on the trampoline when the dogs come running up and Drew says “They came back.”  That shows that he understood they were missing in the first place.

This morning he woke up on the wrong side of the bed!  He didn't want to get out of bed, didn't want to get dressed.  He wanted to go to school in his Bumblebee costume and mask.  The compromise was that he could wear the mask and carry the costume in the car but they had to stay in the car when we got to school.  I'm shocked that he didn't pitch a fit when we got there.  I sure hope he had a good day at school.  No texts or phone calls so that’s a good sign.

He has gotten used to his new exercise routine and does them with little to no complaining.

I wanted to end this post with an email I received from his coach at Brain Balance to show you how supportive and encouraging she is!

“Don't beat yourself up about the screen time. It happens and it hasn't "undone" anything we have done.  It just goes to show you how quickly his left brain can be influenced and take control.  Through Brain Balance we are constantly trying to level the playing field for the hemispheres.  That doesn't mean that once we are balanced we can neglect our right brain again, but it will be much harder for the left brain to be the boss because the two brains will be a constant team.”

And again, I want to thank everyone who reads this blog and sends words of encouragement.  They mean the world to us!

Until next time…

Keepin' It Real

It’s not all rainbows and unicorns…

I want this blog to be a real documentation of Drew’s journey.  He is going to have good times and bad times.  Up until now, we have seen nothing but progress.  The past couple of days have been pretty tough.  Let me back track a little, while we were at the beach we got really lax about his screen time.  As his mother, I should have been more diligent about limiting him.  We had been doing the program for 7 weeks and I just needed some down time.  That was a huge mistake on my part.  If there was ever any doubt that screen time affects my son that is gone now.  I know everyone needs a break now and then but not at the expense of my sweet boy.  I should have found a happy medium.  But it was a lesson that I had to learn the hard way and it breaks my heart. 

When we got back from vacation he did not want to cooperate on anything!  He cried the whole time we did exercises, he kept asking for all of his electronics, etc.  Then when I picked him up from school yesterday Smurfann said he could not focus at all.  She said that he wouldn’t look at her, wouldn’t answer questions, had trouble with transitioning, would run from her and scripted all day!  These are all behaviors we saw before the program.  After we started the program he was very attentive and would answer her questions to the best of his ability.  I know she felt bad telling me this but I’m so glad she did.  It just reaffirms that Brain Balance really does work and that limiting his screen time is vital!  She said I never would have believed that screen time really made that much of a difference until I saw it.  

Yesterday, I made sure that he got his 30 minutes and not a minute more!  This morning, he was so sweet and in such a good mood.  He listened to his music, let me brush him and did his smell therapy with no whining or crying.  He was acting more like the new Drew on Brain Balance.  I was so worried I had undone all the progress we made in the 7 weeks in less than a week.  But Brain Balance tells you that you can’t undo the changes you make to the brain.  After the morning we had, I believe that.  And I’m so thankful!  I’m really curious to see what kind of day he has at school.  I’ll let you know!

Until next time…

Happy St. Patrick's Day!!

I started a post about 2 weeks ago and didn’t even get a paragraph completed!!  So that means it’s been about a month since I’ve posted anything.  Yikes!!  I’m going to just pick up where I left off with the old post that starts below.

It’s been about 2 weeks since I’ve posted anything.  Partly because we didn’t see much change for the first week.  And partly because I suck at this!  Anyway, this past Saturday was week 7 of our 12 week program.  As I said we didn’t see many changes for about a week.  I was talking to Coach Jessica and to a friend of mine on Tuesday (3/4/14) about this and of course that afternoon, bam! 

·         When we got home from school that day he went to the pantry and got out cereal that I tried to get him to eat a couple of weeks earlier.  I put some in a bowl and he pointed to it and said milk.  I said you want milk in your cereal?  And he said yes!  So I put some coconut milk in his cereal and he proceeded to eat two bowls!!  He has never eaten cereal with milk his whole life!!  

·         That night I made an egg casserole for dinner that he ate.  I made salad to go along with it.  He put his fork in my salad and I asked him if he wanted a bite and he said yes.  Then he said “salad little”.  I asked him if he wanted his own salad and he said yes.  He actually ate the whole thing!  A salad with shredded cheese and bleu cheese dressing!!  

·         I was in the school one day picking him up and while I was talking to some of the aids he walked over to an older lady sitting in the rocking chair, touched her cheek with one hand and kissed her on the other.  He was acting out a scene from the movie UP!  I was sitting in the rocking chair a few days later and the same lady was sitting in the one next to me.  She didn’t know I was Drew’s mom and she was telling the aids that she has thought about that for days!  

·         Taylor and Geoff were at our house for dinner one night and Drew leans over and kisses him on the cheek!

·         One Sunday after church I was putting him in the car and he was being a little grumpy.  For some reason I went to pick up one of his toys he had in the car and he said “I don’t want you to touch that!”  Again, I think he was acting out a scene from UP.

·         On Wednesday, we went to Chick-Fil-A on the way to church.  We were sitting at the table eating at church and he points to my sandwich.  I asked him if wanted a bite and he said yes.  So I gave him a bite of my grilled chicken sandwich with lettuce and tomato.  He then went back to his chicken nuggets and FF.  He finished his meal and then reached for my FF, which I had only eaten 3 or 4 out of, and polished those off.  Then he wanted the rest of my sandwich.  There were only a couple of bites left but he took it and ate it!!

·         The school book fair was at the end of February and they always have Clifford the Big Red dog visit.  One of the school librarians posted pictures of Clifford with some of the students.  Drew was one of them.  Her comment was “Drew just chattered away and Clifford was a good listener.”  Then Ruthann told me that she thought the same librarian was upset with him because she just stood there staring at him with Clifford.  Ruthann asked her if everything was ok and she said “Yes, I’ve just never heard Drew say anything other than no.”

·         March 2^nd Abby and I were out having dinner with our children’s minister and Matt was home with Drew.  I got a text from Matt that says “Kevin Harvick is leading the race.  Kevin is a bird.”  I didn’t understand until he told me that is what Drew had said.  The bird in UP is named Kevin.  Then he told me that Drew kept asking him “who is 24, who is 48, who is 8, who is twotee two (22) and Matt said this went on for quite a while.  Then Kevin Harvick pulled into the pits and I guess they kept saying his name since he was in the lead and Drew says “Kevin likes chocolate”  If you haven’t seen the movie UP you need to watch it and then this will all make perfect sense.

·         March 4^th I got a note from “Smurfann” that said at the beginning of gym class he went over to the other class and talked to a group of kids.  Then he walked back over to her and said “Did you see me talking to my friends?”

·         One night I made hard apple cider braised sweet Italian sausage with spaghetti squash.  I cut up the sausage like a hot dog and put a little bit of spaghetti squash sprinkled with some pecorino romano cheese on his plate.  He ate all of the spaghetti squash and said “more spaghetti please”.  So I gave him a larger portion and he ate all of it and the sausage.  While he was eating he says “delicioso dinner mama”

·         During Guidance at school they watched a video about responsibility and the teacher asked a student to turn off the lights.  Ruthann said that Drew turned to her and asked “I will turn the lights back on?”

·         His new favorite thing to do is fill my washing machine soap dispenser with any liquid he can find…apple juice, hand sanitizer, etc…

·         Part of his therapy is wearing a pair of safety glasses with the right side of each eye blocked for 30 minutes after his exercises.  One day I couldn’t find them downstairs so I went upstairs to look for them.  I hear him yell “Mommy I found them”.  I asked him where he found his glasses and he said “In the dishwasher.”  They weren’t in the dishwasher but that’s funny!!

·         He is supposed to be limited to 30 minutes of screen time a day.  This is very hard to stick to, especially on the weekends.  One afternoon I asked him turn the TV off because he had been watching it for 30 minutes.  He will usually tell me no and I will have to ask him a couple of times but he got right up and turned it off!!  After he did that he went somewhere in the house to play and I didn’t know where he was so I said “Drew, where are you?”  He said “I’m right here” and I asked him what he was doing and he said “I’m reading a book, Transformers.”  Normally he would just say I don’t know.

·         One night he wanted to play ball on the stairs with his daddy and I told him he had to take a bath first.  When he was done with his bath he yelled down the stairs for his daddy.  Matt came over and asked him if he was ready and he said “I brushed my hair and I brushed my teeth”.  (he didn’t really, I did).

·         One time when I asked him to turn the TV off he looks at me in the kitchen and says “I in charge.”  This kid is a riot!

·         For as long as I can remember he has taken Melatonin and Benadryl at bed time.  About 2 weeks ago I ran out of Benadryl and didn’t have any more.  He slept until a normal time the next morning so I decided to try an experiment and didn’t give it to him for a couple of nights.  He has now been off of the Benadryl for 2 weeks or so!!

So all of that was from 2 weeks ago!  

Last week we went to Cocoa Beach for Spring break to visit Matt’s parents who are being snowbirds down there!  We stopped by Brain Balance on the way down.  He has dropped 2 more primitive reflexes!!  So to refresh your memory he had to drop 6 when we started.  He has dropped 4 of them in 8 weeks.  Coach Jessica gave us a new exercise routine that is brutal.  She removed several of his exercises but added new ones.  Most of them are to strengthen his core and large muscle groups.  They are to help increase his balance and bilateral movements.  He has extremely low muscle tone.  This is very common in children with Autism.  She switched out his blocking glasses for cool eyelights glasses.  The glasses have little red lights that flash at a certain interval on his left eye.  This is to stimulate his right brain.  Once he gets used to that they will flash on the left side of both eyes.  We are also adding Interactive Metronome exercises.  

I love going to the center to see Jessica.  She is always so positive and encouraging.  There are days when I can only get his exercises done once and there are days when I can get all three sessions in.  It’s very easy to get discouraged when there are more once a days than three a days.  But she always pulls me back up and brushes me off with her encouragement and obvious passion for the program and the kids she is working with.  She was very encouraged with Drew’s progress and said he is definitely ready for in center therapy during the summer.  So now Matt and I have to figure out a way to pay for not only the next 12 week session but an apartment or extended stay place in Georgia.  But I would sell all the teeth in my head if it meant giving my sweet boy the opportunity to be the best he can be!!

As I mentioned earlier, we just got back from the beach.  Drew hates the beach.  I don’t know if it’s the sand, the noise or the vastness of it all.  The first year we went to Hilton Head he absolutely loved it.  The next summer we went back and I couldn’t get him to go anywhere near it.  He was visibly shaking and scared.  When I took him and Abby back over fall break the next year, I at least got him to sit in my lap in the sand for a few minutes.  While we were in Cocoa I took him down to the beach and he tolerated it for a little bit.  He even sat in Matt’s lap (reluctantly) while he was fishing so I could at least snap a picture.  Ironically, the kid who hates the beach is the only one who collected shells.  He does however LOVE the pool!!  Matt and Grampy took him in the pool despite the fact that it was 63 degrees with 36 mile an hour wind gusts.  This gal wasn’t going anywhere near the water!  Thanks Daddy and Grampy!  The next day it warmed up a little and Grammie got in on the action in the pool!  I however was still not going in there!  I hate to be cold!  We also learned that he likes to play tennis.  He played tennis with Grampy a couple of times.  I think I’m going to look into getting him lessons soon.  

Grammie and Grampy’s condo has a great view of the ocean and you can see the ships pass by when they leave port.  The first time we saw one he was so excited.  Then Grampy got out his binoculars and Drew kept calling them goggles.  So every once in a while he’d jump up and go running out to the balcony to look for boats.  One time he saw a fishing boat and said “medium boat”.  

We had a great time and now we are home back to the grind stone!  I want to thank everyone for your kind words and letting me know that you enjoy reading this blog.  I’m sorry this post is so long but that’s what happens when you’re a slacker.  You have to spit it all out in one post!

Until next time…