Updates Pt. 2

It's been awhile ~ I know!!  We've had a lot of changes take place lately - mostly good ones, thankfully!  We finally transitioned through all of the therapists that needed to leave and all of the new ones filling those empty spots.  Jack lost 3 out of 4 line therapists from his original team, which was extremely frustrating at the time, but has turned out really well.  His new therapists are FANTASTIC!!  They love him, connect to him, and are just what he needed.  One of them works with older people affected by autism, and has seen what this kind of early intervention can do for people; for her, this is serious, life-altering work.  Another new one has a pet pig, which Jack loves to pieces.  He even works for the reward of watching videos of it from the therapist's phone.  There is even talk of making videos with the pig to use for potty-training - which is something that Jack will love and connect to.

Speaking of potty training ~

      We finally started!!  The clinic refers to it as 'habit training' and I believe I've seen it called 'interval training'.  It starts out very simple, with Jack just having to sit for 10 seconds once each shift.  Every week the requirements change, and the rewards do as well.  The first week he earned paint for the bathroom, and the second he earned wall stickers.  I took him to Sherwin-Williams to pick out the paint, and to show him some pictures of themes that he could pick from.  He had been talking about fish on the walls for weeks, so that's what I thought he'd pick.  But no.  He went for Army tanks and planes.  Truthfully, he needed to pick a theme that is exciting for him, so this is good.  But it's definitely not one I'd ever pictured!  Thankfully, the picture had blue/gray paint in the background and not army green!!  

Forever grateful to good friends, two of ours helped us paint the room already.  It's all set for Jack to earn his tanks, planes, and helicopters to put on the walls.  If you think of us, pray for us.  This is a huge undertaking for our family.  The truth is:  I get extremely frustrated because I wasn't able to do this myself.  Our senior therapist says things like, "I've potty trained so many kids, it's crazy!"  And then I wonder who else is out there that had a similar experience.  I don't know of any myself!  But Jack is different.  He's a good different, but he's different.  He needs different things from me than Evan does, and that's ok.

On a positive note:  he's grown like crazy in the last couple of months.  His conversational skills have taken off; his ability to express himself has changed so much that's it hard to remember a time when he wasn't able to do it; he's learned how to get attention appropriately; he even wants to watch tv/computer less - which is an activity that could keep him amused for hours and hours.  Now he wants to know what we're going to be doing all the time.  It's been amazing to watch him change and grow, and I'm super-excited for what's in store for him yet this year!

Updates

Tuesday was an AMAZING day!!  My dad and I took Jack to the cardiologist for his echo cardiogram under the assumption that he was going to start on medication soon (beta blockers and blood pressure meds).  Last year, when he had the same test done, the cardiologist almost prescribed it for him but then decided that he was too young, and too afraid of the doctor's office for it to be effective.  The good news: He does NOT need them this year!!  His aortic root is still mildly dilated, but the percentages haven't changed since last year at all.  His height and weight are around the 75th percentile and his aortic root length is at the 99th percentile.  If it stretches anymore, he will still need it; however, if it stays at the 99 mark as he grows then he won't.  So he still needs to be tested every year, and possibly every six months when he's a teenager, but this is such great news! It also means the cardiologist has a history and baseline, instead of just a snapshot.  I was so surprised and relieved that it has taken me these last 5 days to decompress and talk about it.  It's the first time in over 2 years that I can actually picture Jack as a healthy, active kid.

The other awesome thing that happened Tuesday was Jack's handling of the echo.  He was a little SAINT!  He crawled up on the table himself, talked with the technician about taking pictures of his heart, and then just LAID THERE.  ON THE TABLE.  FOR TWENTY MINUTES.  It was AMAZING!!  In case you're not aware, the first time Jack had an echo done, we had to sedate him.  It was a horrible experience..    which ended with the doctor wrapping Jack in a blanket and sticking the IV in his foot.  He wriggled out of the first 3 tries with myself and 2-3 nurses.  He's very limber (the Marfan's) and could get the IV out even with three people holding him.  I've never heard him scream like that, and I hope I never do again.  The way Jack handled his echo Tuesday is miraculous.  I didn't even have to use the treats and toys I had brought with me, he just watched cartoons the whole time.  Later he said things like, "Mom.  They took a picture of my heart.  Inside me here."   And, "I laid really still on the bed, and mommy is really proud of me."  This is so great for Jack, he's come such a long way!

Thank you so much for praying with us!!

An Ode to Evan

Ok, so it's not an actual ode.  Apparently, there are very strict guidelines for those.  But the thought counts, right?  Sometimes I wonder if Evan gets lost in all of the time we spend taking care of Jack.  I hope that's not true, but I think he needs some recognition.


I love listening to Evan wake up in the morning.  He comments on everything he does.  "I get up.  I go see Mommy.  Play with dog.  Drink milk."  And so on.  


Evan has the best smile EVER!!  And he has the laugh to go with it!


I love the way he curls up with his blanket at night.  He rubs it on his face and knows how to wrap himself in it.  He's like a little bug, all cocooned in his blanket and pillow.


Evan is turning into a pack-rat.  He stores toys in his bed at night, and he taught himself how to carry all of the toys he wants to take out with him.  It's hysterical.


I love how he comes and sits on my lap.  He backs himself up and plants himself right on me.  We both like this arrangement.  Truly.


Evan has the best eyes ever.  When he looks at me, I melt.


I love watching him befriend other children.  He always lights up when he sees kids his age, and I've even seen him put some at ease just by being friendly.


Evan is good little brother, staying downstairs with me when Jack is 'playing' upstairs with his 'friends'.  


He is a beautiful child, full of life and laughter.  I thank God for him.



http://en.wikipedia.org/wiki/Ode

Progress and Little Debbie Stock

We have progress!!  I took Jack to the railroad museum last week, and it was the first time I really saw all of his therapy come together for him.  He walked up to another boy and said, "I like trains!  Do you like trains?  This one over here, this is my favorite train.  Do you have a favorite train?"  He spent the whole hour with this boy!!   Jack even talked with the boy's mom, answering questions that he's always struggled with in the past.  It was amazing, and totally worth all of the things we've been struggling with at home and in therapy.  He even invited this boy to get ice cream with him afterwards; he couldn't come but still, Jack made a friend all on his own!!



Looking for something to invest your hard-earned dollars in?  Go for Little Debbie, or Hostess, since we will be stocking up on it in our home.  I was so tired of all the tantrums that I told Jack he could have a Little Debbie Valentines Cake if he went through a shift without a fit.  He REALLY LIKES those cakes, because he hasn't thrown a fit since!  I hope this is a turning point for him, because with his compliance comes potty training!! I can't wait!!


http://littledebbie.com/products/ValentineVanilla.asp

The Doctor, Part Two

A lot has happened in the last few weeks.  We added a new therapist, who seems to be working out well.  We also had another visit with THE DOCTOR, which was great.  Sadly, we are losing a third therapist!  Already!!  This one is harder for me to swallow because she is very, very good with Jack.  She reads him the best out of all of them, aside from Michelle.   Apparently Jack's original team was so good that the clinic is hiring them to fill vacant senior therapist positions.  I actually started crying when I was told about it!  This therapist is at our house 4-5 days a week, and more importantly, Jack really likes her!  He told me last week that he has a lot of fun with her, which he rarely says about anyone!  Thankfully, the clinic is aware that we have just lost two people so they are letting her stay on until she can train her replacement, unlike the other two.  Still, it's heartbreaking to watch Jack become attached to these people and then watch them leave.  I'm really hoping we get some good replacements that will not be leaving quite as quickly.

THE DOCTOR - As usual, he had a lot of really good ideas to help Jack where he struggles the most.  We're going to put off potty training until he is more comfortable with all of his therapists and is more compliant.  Michelle made a comment about making the bathroom a really fun place for him to be.  I agreed but didn't completely understand what she was getting at.  After talking with someone else with an autistic child and hearing what they did to their bathroom, it finally became clear:  we're going to have to turn our bathroom into a train room.  We need paint, of course, and some trains on the wall, but I can see that we need a whole lot more than that too.  One of my friends suggested finding a Stop and Go railroad crossing that he can turn on when he uses the bathroom.  Finally, things connected.  Not just a fun place, a super-awesome-lit up-fantastically fun place.  I have a good feeling that will work for Jack.  He IS going to potty-train!!  I can feel it!!  It may require a completely different idea that what I have ever pictured, but it will work eventually!

I said something this week that I'm not proud of.  I was conversing with someone about Jack and his tantrums (which at times are very, very difficult to listen to), when I finally got to the heart of the matter.  "I don't want him to be like that," I said.  I was referring to the tantrums, which consist of throwing his table and chairs on the floor and throwing his toys and books over the stairs.  Each time something lands on the floor, I cringe and  fear that this a long term issue for him.  Partly, I just thought it wouldn't be me that had such a disruptive child. I also don't want his tantrums to interfere with school, friends, and development ~ he has a lot to give inside.  I also tend to feel defeated as a parent every time I hear something hit the floor or him screaming the always popular, "No!  I don't want that!  I don't want to!!"  Yeah, "I don't want him to be like that," doesn't really help him or me.  Later that day, I realized something important: I'd lost the joy of being Jack's parent.  I was so worried about helping him and overwhelmed by what that requires that I had forgotten what an absolutely fantastic child Jack is.  He is strong-willed and controlling, yes.  But he can utilize those elements of his personality as he gets older and grows into himself, so to speak.  He is also caring, fun, and intelligent.  He has a great sense of humor and the laugh to go with it.  I'm so glad that he was given to me.  Hopefully the next time he tantrums, I will remember these things and not get so upset.

So, any ideas for an awesome train-themed bathroom?  Let me know!!

http://mariesmanor.fateback.com/BOYS/ChooChooTrain_Bedroom.html

Church

Reasons Why I Love My Church:

Every Sunday for at least two months, someone has commented on their experience with Jack and how well he is doing.

Jack has a cardiology appointment in February, and I know from past experience that people will pray for us and contact us to see how everything went.

People give us guidance and support when we feel overwhelmed, don't understand what's happening, or get frustrated.

People are real.  They have their own struggles, which they often share, and don't pretend as though they have everything figured out.

I do not feel alone when I go to church.  

God speaks to me.  

Thank you, God, for providing such a wonderful church family!!

A Bad Day

We'd been having a GREAT week. I have watched Jack change and grow in so many ways lately.  For example, last Friday I took him to Pizza Hut for lunch (since I missed the feeding-him-on-time part of parenting).  He rarely says what he wants to eat, so when he asked for pizza, I said, "Sure! Ok!"  We sat down, the waitress came to take our order and Jack stated, "I want Chocolate Milk.  And breadsticks.  And a big pizza!"  This is the FIRST TIME he has ever ordered something for himself.  I almost cried!  Another great example is from last night.  He was playing with an older kid at church, and they eventually came and sat down by me after service.  Jack had a conversation with this kid (whom we're going to call "Bob," as it's my favorite fake name right now,) and used things we've been doing in therapy.  It's an amazing thing to see that work pay off. This is how the conversation went:
         Bob said, "I'm Bob!"
         Jack pointed to himself and said, "I'm Jack.  I'm five!"  (This is awesome because he is FINALLY admitting his correct age!!  He was just 'telling' a therapist earlier in the week that he was four.)
         Bob said, "I'm in fifth grade."
         Jack said, "Oh yeah.  Fifth grade.  I'm five!  I like trains."

Really, for someone who DOES.NOT.EVER. carry on conversations with people, this was great!!  I know in my heart that Jack enjoys being around people, and that once he has a better grasp of communication he will make many friends.

The Bad Day:  I'm still not sure what set him off, but he had a horrible morning.  I heard him throwing a fit from downstairs but wasn't too worried about it since it's happened before and the therapists know how to handle it.  This time wasn't like those times.  I got a text from the therapist saying, 'Is there anything important on your PC?"  This is our only good PC, mind you.  I asked if she wanted help, and she told me that she couldn't get him to calm down, so yes.  I walked upstairs and felt my stomach sink.  His worktable and chairs had been pushed over, the computer chairs were laying sideways on the floor, and his toys had been thrown all over the room.  Jack was laying on the floor right next to his therapist, just screaming his heart out.  It was an ugly site, one I hope I don't see again anytime soon.  He calmed down within five to ten minutes, and we walked through the room and cleaned everything up.  One problem though; the computer wouldn't start.  Apparently he pushed it over 2-3 times, and had pulled some of the wires out.  We tried to put everything together, and finally got it started but it wouldn't connect with the monitor.  Thankfully, Tony knows his computers well, since he knew right away what was wrong with it.  It is now functioning once again, but needs  a new place to live.
       For me, this is so frustrating.  Jack is NOT a naughty kid.  He is strong-willed, for sure ~ but he would not have gotten away with that in front of his mama!  I've been told by each therapist multiple times that he almost always throws his tantrums during 'play-time.'  He's "eager" to do his work, and he's really good at it.  Unfortunately, he's "very controlling" over play and this is almost always when he erupts.  I don't understand that yet, but I hope that it will become clear soon.  Please pray for us; for grace and understanding.

The rest of the day involved Jack saying, "Mom, you're so cute!"  I think this is his way of saying he likes me. Hugs always accompanied it.  No doubt he was trying to get back on my good side.  At least it was entertaining.