Wednesday, December 28, 2011

December Craziness

December is a HUGE month for our family.  It starts with Jack's birthday, and encompasses Christmas, New Years, and our anniversary.  Tony's birthday isn't far behind in early January.  Insanity (the good kind) reigns in our house for a straight month!!  

Jack's Birthday ~  It turned out great!!  Friends, gifts, and a totally awesome cake definitely made his 5th birthday memorable.  The only hiccup along the way was teaching Jack his new age.  He kept saying, "I'm not 5, I'm number 4!" He finally started saying 5 at the end his birthday, but the day after it was, "My birthday is done.  I'm not 5 anymore.  I'm 4!"  From what I can tell, he is finally understanding that he is 5 now, but I occasionally hear him argue with his therapists about his age.  If you see him around, don't be afraid to ask him how old he is!

Christmas ~ As far as Jack is concerned, we did very well this season.  Multiple family members remarked on how much less inhibited he is this year as compared to the last few years' worth of family gatherings.  It's so nice to look back and see change and progress.  The only thing I see that's different, that I don't like, is that he's starting to use verbal "stims" more, as in he randomly yells out sounds that aren't words.  They usually involve different pitches and apparently it's something that kids with Autism commonly do.  Jack hasn't ever done that much, but I wonder if it's his new way of handling people, especially large groups like a family gathering.  That's when I noticed it the most over the Christmas season.  A few of the therapists noticed it too, and I'm not sure how they handle that yet.  I tried teaching him to say, "I'm excited!" or something similar but I think it's going to take more than that.
Therapy ~ Jack is definitely progressing each month, but this month we had to add some limits to his therapy. I used to walk him upstairs for his first hour, but our senior therapist thought he was too dependent on that.  He REALLY struggles the first hour of the day, and when we tried to get him upstairs by himself he threw terrible fits.  I just want to say ~ listening to your child throw huge fits, which involve hitting/screaming at other people, is horrible.  If you know any other moms dealing with this, make sure you give them a hug and tell them you support them!  This is one of my biggest struggles with his therapy:  handing the reigns over to someone else whom Jack will likely reveal his evil side to.  It's good for him, but it's not pretty.   We also learned today that one of his line therapists had to resign (his favorite).  I'm not sure how things will play out yet, but I'm guessing it means we'll have someone new in our house and that Jack will NOT like it.  Pray for us if you think of us!!  On the happier side of therapy, we added a few new programs which I LOVE.  One is 'pre-school games' and right now he's in the middle of Hide and Seek, I Spy, and Ring Around the Rosie.  Another fun one is, 'I See.'  This is designed to teach sentence structure and it's fun to listen to.  We also added 'Peer Play' and have had some of his friends over during therapy hours.   Its been GREAT to branch out and do some fun things.

I hope everyone had a Merry Christmas!!   =)

Sunday, December 4, 2011


Every two months Jack has a meeting with four professionals from the clinic, including the psychologist that runs it.  After having a two-week delay, we finally went to our first progress review last week.  The psychologist (who I'm now going to refer to as THE DOCTOR) observed Jack for almost an hour and then talked with me and our senior therapist and supervisor about changes he thought we could make to Jack's therapy.  One of the truly wonderful things to hear him say was, "I think Jack is talking really, really well.  Let's move up his language programs to something more difficult."  We waited for over a year and half for Jack to start talking, and by waited I mean stressed, prayed, and bit our fingernails...  always hoping that he would start expressing himself.   THE DOCTOR also mentioned the magical words, potty training.  They call it habit training because its interval based, and they create bathroom habits before they actually start potty training.  Apparently, it only takes 2-3 months on average to potty train their clients. CAN. NOT. WAIT.  I will do anything, including deed my house to anyone who accomplishes this seemingly insurmountable task.  Ok, maybe not my house..   but possibly our car, bikes, and my parents SUV.  Thank God for psychologists, therapists, and autism research!!  And for Tony's new job with awesome health insurance that pays for intensive autism therapy.

Favorite Mildly Autistic Jack Moment last week:  While in the Chicago area, we took Jack for a ride on a commuter train for 20 minutes.  Before we got on the train, he got it stuck in his mind (and would NOT let it go) that we were going on a freight train.  He started crying, and yelling, "No train ride!  Stay in the car!  No train ride for Jack!"  Knowing how much Jack loves trains, I was confused and frustrated (we prepped him for this all week).  Finally, I remembered that he and Grandpa had walked up to a train station as a freight train was passing by.  I turned to Jack and said, "Jack.  We're going on a passenger train.  Do you want to go on a passenger train?"  In a very quiet voice he says, "Oh yeah.  Yes, I do.  I want to go on a passenger train."  Instantly, he was fine.  Happy, even.  So, the four of us enjoyed our ride through the suburbs - complete with more trains passing by, train gates (for those of you who know Evan, this is important), train stations, lots of cool buildings, and a conductor who only charged us the price of one ticket.

Wednesday, November 23, 2011

Jack's Roller-Coaster Ride

I was originally going to write this Monday night, but I'm glad I didn't.  Mondays are long days, with Jack in therapy from 8-5.  He gets 15 minute breaks for every hour of therapy but it's still a very, very long day.  He spent it on a roller-coaster, up and down all day with the low points consisting of hitting his therapists, throwing his chair, and pushing over his table.  For those of you that are close to Jack, you know this is NOT typical behavior for him.  Still, I spent most of the day in tears.   And I wondered....
                                                  "Who IS Jack?"
                                                  "How did we get here?"
                                                  "What did I do wrong?"
                                                  "How do I help him?"
                                                  "What happened to my happy, chirpy little Jack?"
                                                  "What does this mean for Jack's future?"
I think I had a crying hangover.  Being an alcoholic amateur, I have nothing to compare it to - but my face felt like it was going to fall off, I had a headache, and my eyes burned all day.  Thankfully, he is in capable hands and the day did not end badly.  Later, I took Jack for a ride in which he told me he "had a hard day."  TO SAY THE LEAST!!!  While riding around, he told me that he lives in Green Bay, he's 4, he's good, and that Green Bay has lots and lots of cars, a blue bus, and an orange truck.   At least he was learning something in between all the fits!!

Tuesday was definitely a new day.  He had therapists with him from 8-3:30 and he cooperated, played and learned like he usually does.  When I came home he said, "You're so cute, Mommy."  I think that's his way of saying, 'I like you.'  I don't usually see much of what he does during the day, but I was able to watch a therapist teach him something new today. It was a good reminder that although Monday was exceptionally difficult, this process is worth whatever trouble we go through.  Someone once asked me, "What is God's vision for Jack?"  Truthfully, I'm not sure yet ~ but sometimes it's good to remember that God has a plan for Jack.  

Meanwhile, I think I'm going to buy this book with my Christmas money.  The train on the cover seems symbolic of Jack's personality.  I love it.

Monday, November 21, 2011

The Good, the Bad, and the Ugly

The Ugly:  We had a team meeting on Tuesday that consisted of three therapists and myself discussing Jack's behavior during some of his sessions.  He is very controlling of play, often (but not always) throwing fits whenever people don't play with toys the way he expects them to.  Otherwise he is very compliant, and burning through some of his programs faster than they are used to.  It's good and hard to hear at the same time, because I didn't realize he was that controlling over play, but it does make sense looking back and realizing why he doesn't always cooperate with other kids.  Thankfully, they are used to it and have ways of teaching kids how to play with others.

The Bad:  No matter what people say, or how many kids I see throwing tantrums, it is always difficult to listen to Jack get upset with other people.  There are moments when Jack just absolutely does not want to do whatever is being asked of him, and he lets everyone in hearing distance know.  I know the therapists are used to it and know how to handle it, but it's hard to listen and hard to sit still.  It's even harder when it's not the usual 'I'm not getting what I want' tantrum - it's because someone moved the train the 'wrong way' around the train table.

The Good:  There's really a lot of good!  Jack is much more expressive now than even 6 weeks ago.  It is awesome to hear him tell us what he wants or even what he's thinking about - I did not realize how much he wasn't saying.  I also had the following conversation with him today.  If you know Jack, you can picture how funny this was:

      "Jack, what's your favorite color?"
      "Mmmmm, orange I think."
      "Oh, you like orange a lot?"
      "No, I like orange one!"

He has NEVER been able to tell anyone his favorite color, or favorite anything.  Yesterday, he told one of the therapists his favorite color, and I wanted to see if he would say the same thing again.  It was so cool to hear!!

I read today that there are people diagnosed with Autism that eventually change so much that they no longer meet the criteria for a diagnoses after 2-3 years of therapy.  I hope this is possible for Jack, he has so much to give.

Sunday, November 13, 2011

What makes Jack, Jack

Jack is unique.

I prefer to think of him as normal and slightly autistic.  Of course I know that he thinks differently and that he has struggles most kids don't.  Sometimes those worries get the best of me.  Sometimes I wonder if I have what it takes as the parent of a child with a diagnosis.  Other times I wonder what he'll be like as he matures into an adult, and what that may involve for us as parents.  But you know what, at the end of the day I wouldn't change a thing about him.  He's funny, smart, energetic, and kind.  He has a great laugh and the sense of humor to go with it.  Maybe he is different, but I love him the way he is!

Yesterday, he randomly told me he loved me - something he rarely does.  There's nothing like hearing, "I love you, mom!!"

Wednesday, November 9, 2011

Team Meeting Tuesday

Every Tuesday morning at 9AM, Jacks entire team of therapists comes to our home and discusses the past week and anything new they may want to add.  I both love these meetings and stress out about them.  It's fascinating and comforting that there is a team of people that care about our son's development.  It's also hard to hear them all talk about Jack's struggles for an hour.

Normally he joins us and plays with different people while we talk, but yesterday he was throwing a fit over something a therapist asked him to do.  So for almost an hour, the entire team of therapists, and myself, ignored him (they call this extinction) while he ran back and forth upstairs, made random loud noises, and just did whatever he could think of in an effort to gain our attention.  Finally, while he was very slowly making his way downstairs, Evan crawled up to him and gave him a toy.  The joke was, "well I guess Evan just doesn't quite understand how extinction is supposed to work yet."  When he finally made it down, he crawled on my lap and said, "Mommy, you're so cute!!"  LOL

Results of the meeting:  He is already finishing up some of his initial programs so they added some new ones.  They showed me a flow chart yesterday of the entire program of therapy, which can take 3+ years to work through.  It's broken into 6 phases, and they said Jack already blew through the first one and is working in phases 2 and 3 which is where he will stay for a little while.  Not bad!!

Sunday, November 6, 2011

Struggles and Accomplishments

Today is November 6th.  It has been exactly 23 months of taking Jack to various doctors, specialists and evaluations ~ a very long struggle for our young family.   Whenever I reflect on this time period, I am always left wondering...    what happened to my happy, healthy little baby?  He was so perfect, laughing and smiling all the time.  His development was right on track, and I was so thankful to have a healthy baby.  By the time he was two people were starting to make comments about his lack of development, including his doctor.  But I was so convinced that Jack was fine, I didn't listen.  Then our pediatrician wanted to have him tested for Marfan Syndrome - a genetic disorder with a heart condition.  After a year and a half of testing, a specialist confirmed that he did indeed have Marfan Syndrome and that his aortic stem is mildly dilated which will require him to be on serious medication within the year.  Four months later our pediatrician strongly suggested that we have Jack tested for an Autism Spectrum Disorder and he was eventually diagnosed with Autism.  We made a decision to have in-home intensive therapy done which started last month.  This blog is about our journey as we try to provide Jack with all of the tools he needs to live an active, fulfilling life.

After one month of therapy, we have already seen growth.  He is talking more, participating more, and even becoming more affectionate.  The therapy is so intensive, he is even eating and sleeping more.  His current favorite is hot dogs, which he wanted for breakfast today (he didn't get it, but I really struggled not to give in).  I think he's eaten more meat in the last two weeks than he has in his entire lifetime...!!!  It is wonderful to see him freed up from some of his fears and inhibitions.  I can't wait to see what else is in store for him!  His current programs consist mostly of pretend play, conversation questions, matching, and imitation.  So far we've learned he does NOT like to pretend being a plane or a monkey, and whatever else you do, DON'T MESS WITH THE TRAIN TABLE!!!  We've also been told that he is very intelligent and some of his programs are being moved up since he is capable of doing more than what his therapist originally thought.  It's going to be an interesting journey!!