Monday, May 24, 2010

Putting Things in Perspective

I spend the evenings with the kids, fixing dinner, going to Tae Kwon Do (on Mondays), bathing, sometimes doing homework, sometimes out shopping.  We spend the weekends together going to places, parties, movies, parks, etc. These past 2 weeks, I have been paying more attention to how Jonathan interacts with others, how he talks to others and me, etc.  And I have to say that I give thanks to God because he is a very engaging kid, with a strong personality, intelligent and sweet.  We argue and after a bit I actually laugh internally thinking that I am happy I am arguing with my son.  Today for instance, we were in the car coming back from Tae Kwon Do, and I heard him playing with his DS. We told him no DS during the week, but he sneaks it from time to time.  I told him "Jonathan, please turn off your DS".  After a very brief pause, he said "no DS for the rest of the day?" and I said "that's right.  You know we don't want you to play with electronics until the weekends".  He pauses and says "ok mom, what about I play with it until we get home and then I turn it off?"  Clever I thought, but I didn't want him to win this, so I said "if you do that, I won't pay you for today's homework".  He said "Oh no mom, here, it is off".  I pay him $2 a day if he completes his homework before I get home. This interaction was not there last year.  He speaks more fluently.  But he still has a strange tone, and he doesn't have a large variety of topics to discuss.  So that prevents him from fitting in with other kids his age. 

So if I have to put things in perspective, he is not regressing to where he was before.  But because of his limitations, his social skills are not developing as fast as he is growing and I can't help but feel worried that he is going to suffer in life because people are cruel.  The other physical regressions are starting to settle a bit.  I started him back on the homeopathic drops and he is not scratching his throat as much anymore.  I heard him humming today, but it has actually gotten better.  He is more alert, perhaps because of the gluten free diet.  So I see a bit of progress.

Dilemma: He is not severe enough to be in the world of autism alone, and he is not fully recovered to be in the mainstreamed world alone.  Therefore, he is the middle which is starting to make things hard for him.  He is starting to get teased and he gets very offended.  He is very sensitive.  I want to protect him, but there is so much I can do.  I talk to him and tell him to defend himself, but defending from being teased is hard to teach, if not impossible.  It should be an innate reaction, a "reflex" which he might be lacking or having trouble using.  But understanding what the core issues are helps me focus on what I need to seek to help me improve.

Thursday, May 13, 2010

Unexplicable Regression

The past month has been very frustrating as Jonathan started to progressively regress socially and in some aspects physically.  I don't know what it is.  But today I felt really bad because during shower time he told me that some kids in McDonald's made fun of his speech.  They told him that he speaks funny and laughed at him and he asked me if that was true.  I told him no, but the truth is that he does speak differently.

I have not been as aggressive in the past year as I was before and I am afraid that he has plateaued and in some cases regressed.  I am desperate again, looking for other things to do, reading books again, thinking about attending conferences.  I am desperate.  As he is growing, the things that I was scared of are starting to take place.  How do I protect him from what his future is going to be?  A future where mainstreamed kids, teenagers and young adults won't be able to realize that he has an issue and instead are going to make his life miserable as they make fun of him and reject him.  How do I make things a bit better so his future is not so painful? 

I watched "The Horse Boy" the other night and all of a sudden I realized that one of the things I should be doing with Jonathan is taking him to new places that force him to pay attention, learn, survive and mature.  It is hard for me being a full-time professional.  But I am going to try to find the time, at least during the weekends, to go to new adventures.  It would be great to go to a place like Mongolia for a month where the environment is completely foreign, where the food has different good and bad bacteria to populate the digestive system and add to the immune system, but we cannot afford it (time and money-wise).  Therefore, I need to find my own ways.

Regressions observed:
  • Stims: he is humming again.  After all these months (about 6 I think) the humming is back.
  • Tics: he is scratching his throat again.  I thought it was the gluten, but he is doing it (not as often as before) even when he eats gluten free foods.  The homeopathic drops are not working as they did in the past. Perhaps they worked in combination with a different supplement, but I don't know which one.
  • Attention issues / distractions: he is totally distracted.  This is one of the worse issues we are dealing with.  I have been telling him for over a month, every day, to put his backpack in the back of the laundry room when he gets home from school, but it does not stick.  I have to tell him twice or three times everything.  It seems like he is not listening at times.  I thought it was the gluten, but even with gluten free diet, this is still very evident.
  • Gluten issues: I noticed how he went from a semi-alert kid to totally drugged and in a fog in minutes after eating 2 small slices of pizza.  It was scary to watch.  I put him on the gluten free diet and told him what that was so he helps me stay on it.
  • Weight issues: he is 93 lbs and he is 8.  There is something very wrong.  He eats lots of carbs, but in my mind not enough to be so heavy.  Especially with all the exercise he gets at school (he is going to a private school that focuses on movement before each lesson) and tae kwon do 3 times a week.  I removed most of the high carbs from his diet (sugars and breads) and I hope that in 3 months he loses at least 10 lbs.  I am also investigating a potential pituitary or thyroid problem with an endocrinologist.  I need to call tomorrow and set the appointment.
  • Sensory issues: he is lately overly sensitive to clothes tags and foods textures.
  • OCD: this is just never going away. I am frustrated about it.  He has absolutely no interest in anything other than his electronic toys. I want to burn them all.
  • Social skills: he is not fitting in with mainstream kids anymore.  He is having a very hard time playing with our friends' kids.  The last two times, they ran away from him and he came to me crying telling me that they ran away purposely. That they told him they didn't want to play with him.  He is actually quite social and cares about what others think of him.  He is simply different and the other kids are now starting to reject him. It breaks my heart.
  • Cannot control emotions well:  he cries for everything instead of coming to us to talk about what he is not happy with. He also tends to boss around and even yell at people but when people respond back, he acts as if he is scared that we are going to beat him up and then cries to a point that is hard to console.
I decided to go see another DAN! Dr. to help me diagnose issues that I can work on.  I need time and money to run all the tests again and figure out what is going on.  Perhaps some other bug got into his body.  It could be a huge yeast overgrowth coupled with bacteria and other issues.  I am venting.  But I need to let all this out of my chest.  I need time and money.