Sunday, January 24, 2016

Has it been THREE years?!? Oh dear...it has!!!

Hey everyone,  it is definitely time for a Dray update.  I won't be blogging about him as much as I have in the past.  Here is why:  1.  We don't have as many medical treatments and interventions as we used to.  He has been seizure free for 4 years!! 2.  He is doing so much better and I have less to complain about, and this was therapy for dealing with my stress ;) 3.  This blog was intended to be a long-term case study, for others to see how Landau-Kleffner Syndrome has effected Dray's life for the long haul.  I would have LOVED to have read about a child's life over the span of many years of dealing with this disease.  It would have brought me great joy.  BUT, I still shouldn't have waited this long to write.  Life is busy, but I'll try to do better.

Let's talk about school first.  This is the most difficult aspect of for an LKS child, for us it is.  Last year (3rd grade for the 2014-2015 school year) he went to a small group class within the public school system.  We had gone to a private school, but it felt like they were wanting academic achieving kids to be in the classes more, and honestly he wasn't loving it.  So, we looked at all the options and felt this would be a good fit and much closer to us.  He had the BEST most loving teacher.  It was a class of about 18 kids (not as small group as I would have liked), and they all had learning disabilities.  There were some great aspects of this decision such as:  great for him socially, awesome teacher, lots of aids in the class, very flexible with us on his individual tutoring, and like I mentioned closer to home.  The problematic areas were that he was in a class that had kids with much more severe disabilities than his own.  He was by far the furthest along and the least impaired of all the kids.  Therefore, I felt like he wasn't making the progress he could have made if he had just slightly higher expectations on his performance.  Keep in mind...you have to know your kid and what they are capable of.  I felt that he could have performed at a higher level.

So, this year we moved to be closer to a new school, a charter school.  This school has him with average peers and with expectations closer to what a child his age should be experiencing (reports, tests, homework being turned in at certain times, etc.), but with some modifications.  They worked with us, after some pushing, to have his tutor pull him out for one on one time.  They also have the kids working on their own level in small groups.  Plus, they still have an extra aid in the classroom.  I'm not going to lie....it has been a BIG leap for him this year, even with the modifications, we have had growing pains.  But, I really believe he needs to be on a path that will teach him the expectations that kids his age are experiencing.  His biggest struggles are the tests, feeling like a bit of an outsider (more on that later), and not telling me that he HAS homework, ugh!!!  But, I keep telling myself that he needs these life lessons and in the end it will help him as he grows older.  He is on grade level for math, reading, writing, and above grade level for spelling.  When I say he is on grade level for reading, I only mean that he can read the words appropriate for his grade level.  He cannot comprehend a lot of what most kids his age are reading.  He has a hard time recounting details from a story, putting them into a timeline that makes sense, understanding intentions and complicated plots, and answering complex questions about a long story or novel.  We work on that EVERYDAY.  He reads 3 or 4 stories and has to do all of the above for each of the stories.  They are not even long, but he struggles.  So, his inability to conquer this skill causes him to suffer on taking tests with long questions or stories, reading from a history book or other subjects and understanding all of the subject matter.  It is a huge struggle.

Socially, this has been a tough year too, but I knew that going into this.  I expected it and I knew I couldn't shield him from that forever.  I'm like every parent...I want to turn into a mama bear and attack any kid that dares to hurt Dray when I see him as a walking miracle that he can even be in the same classroom as them.  But, kids are kids, and I have to step back a bit ( a bit) and let them all learn.  Not to say I don't get involved at all, because I do.  But, he really believes he I shouldn't and wants to deal with it on his own.  There has been boys not treating him kindly and it breaks my heart.  He tells me, "Mom, I'm 10 now, and I can deal with it on my own." Which, I try to respect within reason.  But, I secretly talk to to his teacher frequently about certain kids to monitor the situation, so that I know when I really need to step in and get involved.  He tends to like girls as friends better.  I think they are kinder to him mainly because he is a cute kid and really knows how to flirt (for reals, he is a charmer), and he doesn't play sports and they are doing activities that he can do.  I knew that not playing sports would be hard for him as a boy.  He just couldn't play anything for such a long time because he was slow and sluggish, didn't understand what was going on, and he didn't enjoy it at all.  Which is difficult because that's a huge way that boys socialize.  It's hard because he doesn't have close friends that he can hang out with and really bond with.  We try to keep him involved in activities so that he feels like he is involved with other kids, but it isn't the same as for typical kids because they invite each other over and really form strong attachments.  He just doesn't have that.  On the other hand, he doesn't complain too much and doesn't make a big deal out of it.  So, we try to just do things with him and enjoy that he is with us.

As for hobbies he has been trying new things this year.  Last year he begged me to do karate, which I resisted.  We finally did it, and it has been the best thing ever!!!  His grades went way up in school...by leaps and bounds!!  He really enjoys it.  So, I should have listened to him earlier.  He had just worked so hard at swimming and I was just starting to see the work paying off, plus I pictured him in a quiet karate class with him being crazy, not understanding, and not paying attention.  OR, him quitting swim and trying karate and then 2 weeks later wanting to quit that too.  I hate that.  But, he is still doing that 5 hours a week.  He also goes to cross fit now for 1.5 hour per week.  We also got him a sports coach that works one on one with him on sports skills.  I know he'll never be really good at sports, but I at least want him to learn the basics and be able to be involved in what other boys are doing, if he should want that.  He asked to learn, so this was the best I could come up with to give him that chance.  He's picking it up and we will try some team sports next year for fun.

He is only on Namenda and Daytrana (for ADD).  We went a long time with out the ADD meds, but his neurologist and his pediatrician both recommended it would be better for him in all ways of life.  Since everything Dr. Chez and his pediatrician has said has been sound and good advice, I listen.  This too has proved to be a good decision.  He doesn't like taking his medicine, but it makes a huge difference in his, ours, and everyone else's frustration levels.  He is like a fly when he's off of it.  Bouncing around from one thing to another, no concentration, no focus, and you can't even really have a conversation with him!!!  So, I'm not sure why people resist that (we all make our own decisions for our kids), but for us it helps in every aspect.  He only has speech at school for 1 hour/week and he sees a literacy specialist every Friday for an hour.  She is amazing!!!  She helps him make sense of stories, characters, plots, vocabulary through acting out and fun activities and understanding his own life stories.  They do the most amazing things!!!  She puts together stories of topics he loves for him to do diagram pictures, acting/plays, and creative writing, chemistry shows, rockets, makes movies, the list goes on an on.  But, she makes it fun, interactive, hands on, and educational.  She's amazing, beyond amazing!!  We are blessed with some pretty amazing people in his life!

I am extremely proud of my son.  I have 2 daughters besides Dray that are extremely high achieving in academics and in their outside activities.  I absolutely hold Dray in the same high regard as I do with my girls, if not even more.  He blows me away almost everyday with his wit, humor, abilities, and tenacity.  He complains about a lot (he is normal), but never about himself.  He has so much confidence in himself, it is unbelievable at times that he never doubts his ability to learn something new, talk to someone new, and to just be himself even if others don't respond well to him all the time. His life is full of challenges, but in the big picture he likes himself.  Sometimes I think he is too confident, and he may be borderline clueless.  He tells me quite often that he doesn't need a tutor, he is way too smart for that, and that he intends to skip a grade.  What?!?  It's troubling.  But, I love that he sees himself that way.  What a blessing.  He is a blessing....I wish every parent could have the lessons that I have been taught in my time of parenting Dray.  I love him dearly!!!