More updates

Again, I haven't posted in a while but I am here and we are living the life and it is great, stressful at times, but great!  We are still working with Dr Goldberg and are seeing small but good things!  We have been slacking with the diet and I need to get better at it.  At this point, I am going to focus on the no dairy and we will try our best with the rest.  It gets so hard, especially when he only eats certain things.  We now have him on Valtrex for the herpes virus, which a couple months ago Dr Goldberg said the labs showed that was under control and now to keep with it.  He currently has 3/4 a tab in the morning, 1/2 afternoon, 3/4 in  the evening of a 500 mg tablet.  He is on 1/2 10 mg tablet per day of Lexapro, to help regulate the brain more or less. We have him on  Tenex to help with the focus and attention span at 1/4 1 mg tablet twice a day.  We may up that a little bit in the next week or so.  I like this approach because it is low doses and I don't feel that he has turned into a zombie.  In fact today when I dropped him off at school, a tech that I have never seen before came to the car extremely happy.  She asked if I was Dylan's Mom.  She said that she absolutely loves Dylan and is beyond excited she gets to work with him today.  I get told that quite frequently and it makes this Momma heart so happy to see that he brings joy to everyone he meets.  Why do I mention this now, because it shows my son has a personality and one that EVERYONE loves.  With the regression being as hard as it is, I am very thankful his personality(the little stinker he is) continues to shine through!  We did more lab work last week

and will find out more at the end of the month on the results!  He has came a long way with blood draws.  We have gone from having 5-6 people hold him down, to him basically doing it himself ha ha.  If you notice he is holding the rubber strip to tie around your arm.  He grabs it and wraps it around his arm and waits.  This time he touched his arm after they cleaned it off, so the tech gave him a new sterilized pad and he wiped his arm as well.  That in my book is a major WIN!

As for school, he is loving it!  He is normally very happy to go, except the occasional, I want to stay home and watch TV days.  I regularly get told how much they like Dylan from all sorts of people and I can tell it is genuine. I have to lie to Dr Goldberg about where he is going because he doesn't like ABA but the way the school does it is not the normal boring(punishment as he calls it) way and it is not affecting his happiness and willingness to learn so for now he remains.  I am a little bothered by the fact that they have no education teaching and focus only on life skills, so I don't think it is a long term facility for what I believe Dylan deserves, but for now we love it.  

At his IEP type meeting(I forget what they call it) they have been impressed with how he is working on his goals and has passed several and close to passing more.  They also did this testing that they should have at the beginning but didn't that had me a little sad reading through because, wow, it made him look worse off then I realized.  I know he is no where near where he should be but I feel good about where he is so seeing that was hard.  They did say though that he is doing pretty good considering where it shows him, so that made me feel a bit better! They added some home goals for us such as:  Using his AAC Device (Cough Drop app) at home to get his needs met and also help him communicate more efficiently, Using positive statements instead of "don'ts, Use antecedent based strategies.  The one thing here is being an Autism parent pretty much makes you all kind of therapists that you never went to school for and have no idea how to implement all of this stuff.  Yeah, I magically know all this stuff and yes I will do it at home.  We can only do our best and that is what we are doing!

I got after Brandon the other day because we have not really worked with Dylan much on our own time.  To give ourselves credit, we are a crazy busy family and it is hard to really want to fit it in.  However, for the past 3 weeks we have started Dylie School!  We have made our own little school room, in the computer room, where we work with him at least 30 minutes a day on the basics like, colors, letters, sounds, shapes, patterns, etc.  My goal is to try and get him up to level on Preschool/Kindergarten and get him back in the district next year. I don't know with the way his birthday falls and him already being one of the older ones if they would allow us to hold him back, but if that is a possibility maybe we could do that.  Dr Goldberg did mention that he is ok with a Special Needs class just not the Autism Only class, which makes sense to me.  In the Autism class they are more working on life skills and not focusing on them getting better and catching up with his peers where a general special needs class does more catching up on education as well.  So we'll see, but hopefully we can get him there!   

So in a nutshell, and in my limited amount of time to catch up, here is where we are currently.  Just keep swimming, just keep swimming translates to just keep working, just keep working translates to just keep living, just keep living translates to just keep surviving, just keep surviving translates to I will do whatever I have to to help Dylan out and hope anything I do will help him in the most positive way!  I love this boy and I am beyond grateful that he is my son!  I love you Dylie boo!