Friday, April 12, 2013


I will let the video speak for itself...
(make sure your volume is turned up!)

I am so full of joy!  I feel like I am walking on air.  :)  For those of you who know Joel or read my post "When Your Child Can't Talk", you know what a surprise this was and how much it means to us.

The amazing woman you hear in the video is one of Joel's ABA therapists (the one I call "K").  We have been working on teaching Joel to talk in ABA, with excellent progress, but he is still needing a lot of prompting.  We had not been trying to teach him to count.  That still seemed a ways off.  We have, however, used counting to ten several times in the last few weeks for taking a "break" when Joel has not cooperated with what he was told to do, or told not to do.  He occasionally repeated the numbers with slight interest, so you can imagine how shocked we were today when he took the lead in counting!  Our jaws were hanging on the ground!  I had tears in my eyes as I listened to him count over and over, every time he ran off the playground into the planter.  I am so thankful that K suggested to take video so Joel's other therapists would believe us.  I was able to show the video to Isaac (Joel's daddy) when he got home from work and my heart swelled as I  watched him get tears in his eyes.  I love that I will be able to watch it over and over, but even better, I love that I can walk into the back yard right now and sit Joel down and count with him.  :)  I can't stop grinning from ear to ear.  Tonight it's time to celebrate!

Thursday, April 11, 2013

One of Those Moms

Apparently I am one of those moms.  You know, the one who can coordinate two doctors crazy schedules AND a hospitals schedule.  Yes, I actually was told by a doctor's secretary the other day that "well, you are one of those moms who knows how to coordinate doctors busy schedules, so just talk to the doctor about it when you are in."  "Those" was definitely emphasized.  I think it was meant as a compliment.  To me it means I've been doing this a lot of years now.  Over seven years.  I never could have pictured the present even a few years ago.  But now here we are, and I am happy to be called "one of those moms".  I welcome myself to the club.  It is an awesome group of women to belong to.  I can't say that I always wanted to be "one of those moms".  That would be lying.  But I can say that now that I am here, there is no place I'd rather be.

I must also say that I am one of those moms who knows when they need help (especially after weeks of procrastinating).  I was able to accomplish my long list of phone calls by using a couple of respite hours.  It is amazing how much easier it is to accomplish a bunch of phone calls when there is another adult to field questions, comments, children who can't talk, and attention seeking toddlers.  Something they don't warn you about when your child is diagnosed as special needs is the hours and hours and hours you will spend on the phone with doctors offices and insurance.  Enough hours that nurses and front desk personnel will remember you and your child by name or even voice occasionally.  I guess it does have it's perks.  ;)

So now that I have complex scheduling figured out, anyone have tips on how to get a personal, full-time assistant?  Pretty please and thank you?!  One can always dream, right?

Saturday, November 17, 2012

Our First TSC Conference

I am so thankful for today.  We went to an all day TSC conference at UCLA, which is a long two-and-a-half hour drive from our house.  I am completely mentally and emotionally exhausted right now.  I am even typing half-blind because my eyes just couldn't stand my contacts any more.  I am completely ready for bed, and headed there as soon as I'm done typing this post, but I needed to write this before my head hit the pillow.

We heard so much great information today shared by some of the leading doctors and researchers in the field.  It was so much, I hope I can retain everything.  We met some other parents who have children with TSC, amazing parents who were so open to sharing what they have learned along this long journey.  For that I am thankful.  We were protected from an accident on wet roads as we left UCLA.  It was obvious that God put a buffer around our car as a speeding SUV lost control directly behind us and fishtailed within feet of our front bumper.  How that car managed to come in front of us before fishtailing instead of sideswiping us was only by God's hand.  Isaac and I went out to dinner on our way home.  A much needed date that had been a long time coming.  But the best part of today was that three other people were there for Joel (and any other future clients they may have with TSC, which I would highly recommend this company to other local families - email me and I'll give you their info).  Two are his new ABA therapists and one hopefully will be soon.  How incredible to have a large part of our team there, learning the intricacies of TSC.  Tuberous Sclerosis is such a complex disorder and I know it will be so helpful to Joel for the team working with him to understand more about this condition.  I can not even put into words how thankful we are that they were there, how thankful we are for this company that truly cares about Joel and our family, and how thankful we are for the incredible individuals that make up this company.

We are feeling very cared about and supported as we venture into this next stage of life.  We are blessed.

With love and thankfulness,
Joel's Mom

Friday, November 16, 2012

Survival Mode

I have been thinking about this blog a lot lately.  So many things have changed in Joel.  So much has gotten harder.  He has Autism.  It has changed him, changed us as well.  I really need to start posting again.  Updating.  I want his story to be full and complete here. I need to work through my thoughts and feelings...

But that's just it.  I don't want to think about my feelings, my emotions.  I think about sitting down to write, and after several moments of trying to figure out how to put everything, anything, into words I find it's easier to give in to a distraction like the kids or the house.  I sit down at the computer to try and force myself to write and somehow find myself mindlessly browsing Facebook, avoiding facing my emotions without even thinking about it.  Something, anything but thinking about my feelings.  Tears come more easily than I am comfortable with.  Autism is hard.  Behavioral issues are hard.  Life is hard.  Sometimes I feel like I can't write out of pure exhaustion.  Sometimes it's because I have a million words to say, but can't figure out how to say or write a single one.

So instead I just keep looking straight ahead, putting one foot in front of the other.  I call it survival mode.  The problem is that I want to do so much more than survive.  I just don't know how.

Every time I look at this blog it hurts.  It hurts because I look back at old posts and hear the excitement I felt at the progress he was making.  Progress that has been ripped from us in so many ways.  I look back and see the difference in the number of posts between 2008 and 2009.  That was about when his seizures started  coming back after not having them for a couple of years after his surgery.  That was when the Autism started creeping in, slowly stealing what little communication he had and locking him into his own little world.  That was when it got hard to write.

Things are starting to get better.  Joel just started ABA (behavioral therapy) last week and we now have an awesome support team.  We have been doing parent training with the best of the best since June.  It has forced me to face the Autism, which was hard at first, then good.  That's how I was able to write my last post.  But now that the ten-plus-hours a week of ABA has started, and at least one of the therapists is a counseling intern (both of Joel's therapists are psychotherapists), I am having to face my thoughts and feelings in a whole new way.  It's oh-so-hard, but I know it will be good in the end.  I have so much to be thankful for, and while I am going to try to process my thoughts, feelings, and emotions, I am going to choose to focus on the good.

With love and emotions,
Joel's Mom

Friday, October 26, 2012

When Your Child Can't Talk

It is pretty high up on my list of most difficult things in life.  It breaks my heart daily.  It stinks.  It is hard in so many ways.

IT is not being able to talk with my seven-year-old son.  Oh, I can talk to him.  I can talk at him.  But I can't talk with him.

Sometimes he talks to me with his eyes.  They are trying to tell me everything.  Sometimes they do.  Like when he's happy.  Or when he's sad.  Or when he is loving me.  But they can't tell me what he's thinking.  They can't tell me where it hurts or exactly what he wants.

Sometimes his lips move with no sound and it looks like he is forming words.  But try as I might, I usually can't make out a single one.  It hurts to know he is trying to tell me something and I can't understand.

Sometimes he squeals, or says "Daddy, daddy, daddy" over and over, or says "tatatatatatatatatatatata".  I wish I knew what it meant beyond being excited or upset.

Is it because he has autism?  Or because they removed the speech portion of his brain at fifteen-months-old?  Did the speech not properly re-map to the other side of his brain?  Is it because of epilepsy causing damage to his brain?  Or is it because of the benign tumors in his brain caused by Tuberous Sclerosis?  Only God knows.  Only time will tell.....or won't.

All I know is that when I look deep into his eyes and he gives me a huge toothless grin, my heart melts into a puddle.  I love this boy.  And that makes it all worth it.

With love and heartache,
Joel's Mom