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Life Right Now

September 20, 2011

This is the first post for my new blog. A blog that I really wish I didn’t feel the emotional need to create. But whatever. Life is as it is which I’ve learned over time.

I guess I’ll start with an intro though most of you can skip this.  It reminds me of the beginning of all those Baby Sitter Club books where every book started the same boring explanatory way for all the people not familiar with the stories.  I used to read those books while my mom drove me to my baby sitter’s in the morning.  I always skipped over that section. Feel free to do that too.   I’m Laura and my husband is Tom. We live in Oklahoma in a typical middle class neighborhood.  We’ve got two kids. Rett, 2 and Evie, 15 months. And I’m pregnant with our second son who is due in February.   Tom works for a computer company doing stuff I don’t understand. I used to teach first grade but gave up the glamorous life for motherhood. I now spend my days chasing kids, changing diapers and trying to keep sane. Seems like a very small paragraph to sum us up. I think the Baby Sitter’s Club section was longer.

I’m not sure the direction this blog is going but for now I want to focus on our oldest son, Rett and maybe some other random things will pop up also.  Rett was 4 weeks early.  He was a planned home birth but he knows how to be a party crasher.  Rushed to the hospital to have him 45 minutes later, he arrived in a very small but perfect package.  He had some minor temperature issues but other then that, was breathing and all that on his own.  And so our family began.  Rett continued to grow and do all those fun things like any other kid. He sat up, he crawled, he walked, he said words, he smiled and laughed and talked and had his first Christmas and his first birthday and all of those wonderful things that kids do.  He did all things early or on time. Nothing out of the ordinary.  You go to the doctor’s visits and they ask you if your child can do this thing and this thing and this thing and I always said yes. Until around 18 or 20 months.  My friend Jen had to clue me in on those months because I’ve had another child and the first one sort of gets forgotten in a new world of firsts and milestones.  Jen tells me that some of the first things I noticed is Rett wouldn’t respond to yes or no questions.  He wouldn’t tell me what he wanted if given two choices.  He repeated phrases but was not making up his own. There were some other things I noticed. He dumped out all his toys ALL the time. We had to take every toy out of his main room and hide it in the closet because the entire room would be trashed.  He would find a pile of leaves/dirt/rocks or wood chips and play for 30 minutes or more. I started noticing that his pretend play wasn’t progressing. He was doing normal things at one time but then.. the other kids kept developing and he remained stuck there.  I started bringing up my concerns to my pediatrician.  She said ‘let’s just wait till X appt and see where he is’. I think she had me labeled already. ‘Worried First Time Mom’.  Then at 2.5 she finally listened.  He STILL wasn’t creating his own speech. So off we went for a speech and hearing evaluation.

Our  state provides free screening and services until they are 3. Which was fast approaching.  I took him for that and he basically would hardly cooperate for the testing. At this point a lot of you are probably guessing how this story ends but for me I was still assuming it was a speech or maybe a developmental delay.  They told me he didn’t qualify for speech. His vocabulary was actually above level.  His physical things were all where they needed to be. He had issues with problem solving and with communication. He was still unable to answer most questions without throwing a fit or getting very annoyed.  So because of some other things, he qualified for free help. I also took him to a private office for a speech and hearing evaluation. His hearing checked out fine.  He was once again uncooperative with the speech but she told me she thought he’d qualify.

So then we had meetings for when the state would come out to help.  First set up time in our home they canceled thirty minutes before.  Having sessions in your house where you have to chase your kids around all morning cleaning up the toys and then having them cancel is not fun.  Second meeting, she showed up.  She had brought a barn with animals for Rett to play with.  Rett primarily wanted to put things in and out of the barn doors. It was one of those old school fisher price barns like I had when I was a kid. He was naming animals but mostly wanted to put them in and out of the doors.  She wanted him to make the animals run/jump and pretend to eat.  He basically shut down and refused to do this or tried to hit the toys and make them fly everywhere.  Then we tried some other stuff. I don’t really even remember. He went and got a book and started identifying the animals in it, one of his other favorite activities.

At one point she said, ‘what do you think is going on?’ and I knew. Its like I could read her mind. I knew what she wanted to bring up but not bring up. I’ve been a teacher, I know these psychological ways to bring up touchy topics. What do YOU think is going on?  And so I just said ‘I really don’t think its Aspberger’s.’ I’ve taught these kids. I’ve worked with these kids.  But not at age 2.  She told me that she had seen the evaluation being given and didn’t believe he would qualify either. That was a relief.  She took a lot of notes told me she had no idea what was going on and that she would confer with the people there and get back to me. 20 minutes later I get  voice mail. She tells me that the other two ladies believe that not only should he have the test, but they feel pretty strongly that he will qualify.  At least it was a voice mail so I could cry before calling her back.  At the instant I really wished I could go back to before we decided to get him tested.  Denial is comfortable.  Not that it would have changed what was going on with him but facing those emotions was no fun.

And now I’m still waiting on this test to be scheduled. In the mean time I have done some research.  Rett is scheduled to start private speech with a place here that also offers occupational and some other therapies.  I believe we’ll probably need them.  As I continued to research I kept running into things that described him.  And so in a week I’ve went through angry, sad, angry, denial and coming into acceptance. Not sure what steps those go in but knowing me, I’ll be returning to all of them a few times while I deal with this.

The goal for this blog is a way for me to share our journey of answers, things that work and that don’t work.  I don’t have a huge background on this and most of this will be self research besides ideas I get from what therapists we can find.  But I don’t think he has time to wait around for them to figure out how to help. So I’m starting now.   I also want a resource for moms that may see some signs that I ‘saw’ but didn’t see.  I have some videos that I’ve taken and I’ll take more.  Just a glimpse of what we accepted as personality quirks or what became our ‘normal’ so that we didn’t see the warning signs.

I have a lot of other stuff to post but I guess this will do for now.  My blog title comes from how I’m feeling right now.  Life gives you lemons and you make lemonade. So for now, I’m trying to figure out the recipe.  That’s where we are for now.

4 Comments leave one →
  1. Jordon permalink
    September 20, 2011 3:42 pm

    With tears in my eyes, I want you to know that I’m thinking of you!!! ❤ You and your family will be in my prayers. I will be reading along with you on your journey!!

  2. September 20, 2011 3:59 pm

    Laura, I am so excited that you are doing this. You write so well and it was wonderful to read your thoughts and emotions. I am here for you, whatever you need, but I think you are on the right track. You are looking in the right places, you are asking the right questions and you will find answers. I can relate with you description of wanting to go back in time. Denial is kind of nice sometimes. I think about what it was like to parent when I was still naive, when bad things, when hard things happened to other people-not me and my children. Welcome to the club-the club where we all get to be a little overwhelmed, a little lost and a litte broken all the time-and its okay!

  3. Jodi Eppler permalink
    September 20, 2011 4:06 pm

    Rett is such a lucky boy to have you as his Mamma. If there is anyone that can help him develop the tools he will need to live a functional, fulfilling life, it is you. Your insight, your strength, your love will get you all through this! ((hugs))

  4. September 20, 2011 4:08 pm

    Also, I don’t know if you read this blog entry of mine, that I wrote about a year ago, but I thought it might give some insight-at least to how this experience has been for me:

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