Re: Special needs mamas, ? for you...
How frustrating for you! I am sorry that you are awaiting a possible dx. I hope once you figure things out you can get your family/friends to learn more about it and begin to accept the information.
My son has Down syndrome, but we didn't have any clue that he had it until he aspirated & stopped breathing when he was 3 wks old. He was life-flighted to a children's hospital and they figured it out immediately. We were all in shock, we just had no clue. I had to literally point out his Ds traits to people to get them to believe it. I still meet people that are surprised to find out he has Ds, even though he is 3 and the size of an 18 month old, is just beginning to talk and has only been walking for a few months.
Good friends of ours found out within the past 6 months that their son has ASD and one set of grandparents is completely in denial. It has really hurt the relationship between our friends and the grandparents.
*sidenote... even though we have known about Ds for the past 3 yrs, my MIL still doesn't understand a lot about it. She recently told my husband that she was so surprised that there are adults with Ds, she thought Sean would die when he was 13!!! Nuts!*