Wednesday, July 26, 2017

Dray is almost 12!! I can't believe it!!

Hello everyone!  Can you believe I have documented Dray and our family's life with Landau Kleffner Syndrome for almost 8 years now, crazy!  Dray was diagnosed at age 4 and I have tried my best to keep a record of every therapy, intervention, medication, and tests we have had over all of these years.  I hope that all of this has been useful to someone out there.  I tried my best to give hope, but not sugar coat LKS.  Thank you for the comments of encouragement, adults who have had LKS and their stories of success, and especially the parents of children with LKS reaching out to me for help and prayers for their kids as well.

Dray just finished 5th grade at a charter school this year.  Here's this year in a nutshell:  tested average in everything except for abstract language and reading comprehension (both very difficult language areas for him to overcome) and he was also below average in his short term memory, got MOSTLY all A's (a C in science - more on that later), made new friends,  was bullied quite a bit too, got his brown belt in karate, and played basketball (his first team sport since he was a little kid).  

So, in school he does well when he has someone telling him what to do step by step and then enforcing that he gets it done.  If I know about a project or test, I can help him organize it and tell him how to put it together or help him to study.  BUT, he has serious struggles with remembering to tell me just about anything.  I have to have constant communication with teachers or else he won't tell me there is a book report or test.  So, in science, he NEVER told me about tests.  As a result, he did not do so well.  Obviously, if Dray doesn't study hard...he will not do well.  His tutor stays on top of math, grammar, and reading comprehension.  I make sure he does all projects, at home reading on his own, and I study with him on all other tests.  Obviously, science was not a strength for me.  I have determined that sometimes you have to pick your battles though, and I chose to focus elsewhere, obviously :/

Well, the other day Dray turned 12.  This has been bittersweet for me.  I think a parent of any child, average or special needs, laments their baby growing up.  Remembering the innocence of their childhood, how carefree they were, and how they just adored their mom and dad.  BUT, for me it's more than that.  Every year that goes by he understands more and more that he's different.  He sees that other kids understand more, converse better, joke around in a different way, and can organize their life in such a way that they get praise from adults and peers for both simple accomplishments and also now for big accomplishments as well.  He has been telling me how hard his life is because he had LKS as a child.  He tells me that everyone thinks he is bad and he is always in trouble.  When I hear him say that I feel awful, because I feel like I don't give him a break.  I need to be more loving, accepting, and lenient of his weaknesses.  I probably could learn to do that better and I strongly believe in reevaluating and trying to see myself objectively.  I want to change, evolve, and do better.  But, there is always that side of me that feels that I should not let him make excuses for not being responsible, respectful, and a hard worker.  I feel strongly that he can try better to remember and stay on task and that I can demand that of him (within reason).  I absolutely want to see him overcome and have faith that he can.  Tonight I tried to have this conversation with him (one of many) and tried to keep the conversation concise, simple, and to the point.  I left not feeling confident that he understood, or felt any drive to do better.  I was frustrated.  I picked up my phone and saw a new email from a mother of a daughter, in the beginnings of this scary disease, and she poured her heart out about her sweet little girl.   She told me she had read this blog and appreciated the truth and the hope that it brought her.  But, she also told me about sitting over her little girl at night and crying and praying that she would be ok.  Now...these nights I remember, because I had many of these sleepless nights of tears and prayers for my little boy.  This email brought me to tears because it brought many overflowing emotions of remembering those scary beginnings, remembering the worst part of it all - the unknown of any outcomes, and also bringing me back to this moment right now and the reality of it.  That I have a 12 year old boy that has had a very scary diagnosis, and here he is alive, healthy, loving, active, learning, growing, speaking to me, and a beautiful part of my life.  I need to be more thankful to be where I am and I will always try my very best to remember all of those mothers and fathers who are in the scary beginnings, the unknown territory with no answers yet, and those who's children haven't had such a great outcome.  They are the reason I write and have put all of these things we have experienced out there for everyone to see, good and bad.  

So, I hope I have done that!!  In the end...we love these children with all of our heart and soul.  They are precious.  Just a last few updates on what we are doing righy now - as an end to this post ;)  Dray still needs speech therapy to help him understand sarcasm and story telling/comprehension, and following conversations.  He takes Ritalin for ADHD.  Judge if you will, but we must as parents make tough choices.  I talked to as many doctors as I could to make the best decision possible.  Dray's neurologist, several pediatricians, and his speech pathologist have all told me that it is in his best interest to have him be able to focus, not stick out in class, have less frustration from him, his classmates, and teachers.  So...there it is!  We have started in on school classes for next year on navigating 6th grade and learning to socialize better.  Also, he has 2 hours of tutoring Monday-Friday.  I always hope I'm doing enough to help never feels like I can give him enough!!  

Dray driving on his 12th birthday with Grandpa!!  No's in a big, empty parking lot.  He is a good driver for a 12 year old.  We love Dray so very much and I love seeing him in his element (behind a wheel)!


  1. We need all he support we can get. My son is now 35 and there was such an impact on our entire family as he got older that we wrote a book that is about to be published. A Family Story Coping with LKS.

  2. I will provide an update when it is available and happy to provide support.

    Lisa Lopez