Sunday, January 29, 2012

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!!

Sunday, January 8, 2012


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!!

Thursday, January 5, 2012

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.