A little catching up 

I have wanted to write a post for awhile and have many things swimming around in my head, but every time I think to write one, all the thoughts get jumbled and I feel like I will just be a confusing mess.  I’m going to give it a try, and apologize upfront if it is scattered. 

There has been a lot going on with Nathan lately in terms of mood and new schedules and new people coming into Nathan’s life.

About 2 months ago Nathan’s behavior took a turn for the worse.  Nothing had changed , we couldn’t figure it out.  However, one thing we have learned is that when his behavior changes drastically, something could be going on with his body that we aren’t aware of.  He made one comment one time that his tooth hurt.  We made an appointment for the dentist and Jay took him in.  It turned out he had two loose baby molars that were not coming out, but the adult molars were coming in and pushing against his gums causing pain.  Nathan has a very high tolerance for pain, so he didn’t express it other than behaviorally.  The dentist was able to reach in and pull the molars out without a problem and even got a cleaning in with NO cavities.  That amazed me since brushing his teeth is extremely difficult to say the least. Almost as soon as the appointment was over, his behavior was right back on track again.

Recently, we have secured 2 CNA’s for Nathan!! We now have help everyday except Monday which has literally been a lifesaver and could not have come at a better time for us. Jay has transitioned to a new job within the same company and is putting in very long hours, so the extra help at home has truly been my saving grace.  They have transitioned well into his life and he really enjoys spending time with each of them and looks forward to them being here.

About a month ago, we did a medication change and 2 weeks ago Nathan’s behavior took another turn for the worse.  Fearing again that something physically might be going on, we took him to the Pediatrician on Sunday to check his ears ( he is notorious for ear problems).  Everything checked out just fine. So we backed into it and are hopeful that it is the medication change.  We went back to the original dose on Monday and are hoping to see a positive change soon.  We have had some good moments, but are not quite on track yet.

We have reached out to our Church who have a Special Needs room to see if our CNA could come be with Nathan during the service so we can get back to attending Church.  They said yes, so pending a couple of things we are really looking forward to going back.  I feel empty in so many ways, that I am seeking help from the best source I know.

Nathan has been doing pretty good at school.  He does not really talk about it much, so we get most of our information through a back and forth document provided by his teacher.  One thing we have really noticed is how terribly lonely he is.  His days are surrounded by Music Therapist, Behavior Therapists, CNA’s, Jay and me.  The one thing missing from that are peer friends.  He doesn’t have any.  Middle school is very different than elementary school .  He does not have recess anymore, so he doesn’t have that connection with them. At my request, he did have a friend come over last week for a couple of hours.  He was beside himself with excitement.  It was such a joy to see him so happy.  Madison had a friend over and he did too and it was the first time in I can’t even say where it felt normal.  It is hard to not have those connections anymore . It is those moments that just make me mad and sad. It is a hard thing to express. We just want him to be happy and we will go to the ends of the earth to ensure that he is.

Sorry for the lengthy post.  We appreciate all of you who have stuck with us, it means so much.