Childhood disintegrative disorder: Our Journey Begins
Shortly after noon today we will begin our journey to discover the truth behind what’s happening to our oldest son, Gavin. I’m scrambling today to get as many records as possible on such short notice. I’m really nervous about today and I’m not entirely sure what to expect. We’ve been to the Cleveland Clinic countless times already but this time is different.
Honestly, if we discover that Gavin does indeed have childhood disintegrative disorder, it won’t really change anything. I mean to that we will be dealing with things we have already been dealing with, only now we would know what to call it. Does that make sense?
Getting mentally prepared for a childhood disintegrative disorder evaluation
Because this all happened so quickly, we have not been able to prepare the way we would have liked. Typically, we prefer to have all our ducks in a row so to speak. Hopefully, we will be able to pick up at least some of his records, especially the letter from Dr. R. I have made all the follow up calls for records and I’m now waiting to hear back. The best we can do is just recount what has been 
happening over the last few years and answer any questions to the best of our ability.
Gavin has OT this morning prior to our departure. The kids are going to my parents so they don’t have to come along with us. The challenge will be getting Emmett dressed. As soon as Lizze and Gavin get back from his OT appointment we are going to get on our way.
Please keep us in your thoughts today. I intend to update while we are there. So stand by for updates.
I would like to thank everyone for your support and also for those that helped to educate me on childhood disintegrative disorder.
Thank You
Update:
I just heard back from Dr. R and ALL the records will be sent via email. That way its instant and they can print off what they need.
That actually makes sense; I wondered how Gavin had changed from the child I knew to what you and Lizze are describing now. I'll be keeping an eye out to see what happens. Thoughts and prayers for you all. 🙂
My heart and prayers are with you all Rob! I can remember holding Gavin when he was just a few days old. I was there from the start. My biggest regret is letting so much time and space come between Lizze & I. I literally have tears in my eyes right now! Please let me know if there is ANYTHING I can do to help! I mean ANYTHING! Please let Lizze know that I am standing right by her side in spirit as I was with her from the day she found out about Gavin! I will be awaiting ALL updates on the matter. Love you all
I left a comment on your blog site.
You and your family will be in my thoughts and prayers.
You and your family will be in my prayers. My son who is 20 now falls into the autism spectrum and has seizure disorder has regressed and lost skills over the years. We were always told that his regression was a result of his seizures but this disorder that you mentioned was never brought up. It gets me to wonder. Thanks so much for the information and enlightenment. I hope that all goes well during this visit and evaluation. Just know that I understand and relate to every one of your posts. Know that you are never alone. I'm so happy to have discovered your blog.
Barb Dittmar Ward