Monday, April 13, 2015

Autism and Bereavement

     It has been a rough few months. I wanted to write about holidays and stress in January and how parties affect Jacob. Also his birthday in February, but things turned from pure excitement to a nightmare in a quick amount of time.  I will do my best to give you Jacobs perspective on this, but its been an all around hard time for us all. In December right before Christmas I found out we were going to have another child. I couldn't wait to tell the kids and surprised them with an early Christmas gift. In the box was ultrasound pictures of baby Charlotte and a pack of baby onesies. They seemed thrilled.
    For weeks the kids fought over the sex of the baby. Sophie hoping for a sister and Jacob a brother. Jacob declaring after a vote that sophie wanted nothing to do with that it was boy. He and I voted for a boy and I only voted for a girl since Sophie declined voting and not giving into such a silly way to determine the sex. 
    I was having issues spotting the first couple weeks and went in to have ultrasounds done every two weeks. Jacob told me it was a boy because it had short hair in those pictures. Cracked me up, by his logic short hair meant boy even though I constantly told him the baby had no hair right now. Baby was fine every ultrasound time, until the NT scan. Which this scan I had no idea was even a test until after the results because I had never gone through this test for any of my other children. 
   I don't want to get into a play by play of each appointment after, it was like a slow train wreck and quite frankly not something I want to relive. We would find out each time something worse about baby Charlotte. After each visit we told Sophia we were not sure she was going to make it and what they found. Jacob on the other hand was going to be hard to explain this to. We found out about the baby being a girl at the same time we found out she had trisomy 13. We did not tell him it was girl until after she passed away. 
    I discussed ways to have this talk with his therapy and they sent me to this site ( They have great social stories for this and they gave me some other resources on how to deal with death. This situation was a tricky one, and I wasn't sure how to go about it. So I showed him the information and tried to look at it from his perspective. Never dealing with death before and knowing how he didn't feel connected to Charlotte I tried to look at it how he would. I ran and grabbed a book about the body from his home school library. He love science so I could tell I had his attention, unlike the other stuff I showed him. I talked to him about the brain and its sections and how Charotte had no forebrain. I showed him the heart and its sections and how Charlotte had only a two chamber heart. I talked about how she didn't make it to be with us because of this. 
   I could tell he finally understood,  I was talking on his level and he understood she was "broken". He wasn't visibly upset on the outside, but we all grieve differently so I don't know how he is inside. Emotionally he still is a 4 or 5 year old so I didn't expect much. But he understood which is half the battle. He seems to be back to normal now, but I just need to my find my new normal, whatever that is.