Sunday, January 4, 2009


I love it when my sister comes. I hate it when my sister comes. HUH??? Yes, you read that correctly.

I love to see my sister. She is so funny. We laugh a lot when she is here. I try to have as good a time as possible. I don't get to see her very often cause she lives about 9 hours away. She is so patient & understanding, continually making the trek down here since it is hard for us to go any where.

I hate when she comes cause MM's disabilities become a giant elephant wearing a strobe light in a room that is only 200 square feet. MM does not like my nephew, the K-man. He is pure boy- rambunctious, zealous & happy. For some reason, he stresses her out. This, along with people being in the house (did I mention my sis has to stay at a hotel as well which also adds the money factor in) for visits, the change in routine, is too much for her. She spends a lot of the time crying, hiding or stimming. It saddens me so. I tried to do all the tricks for her. It doesn't really work. She is just a mess the whole time. She doesn't eat well, sleep well or function.

It breaks me down. I get stressed myself. DH gets upset which also adds to the stress level. I don't know how to help her. I realize that getting her out of her comfort zone is nothing but chaos for her. I realize that this (autism) is FOR REAL and this is not EVER going away. I also tear up as I share in the joy of my nephew and all his neurotypicalness (is that a word?). He is almost 2 years younger than MM and has surpassed her in many ways. He can run endlessly, he can write & draw pictures, he feeds himself, he gets in & out of the car on his own, etc, etc. The second he sees you, he looks at you and starts running. He jumps into your arms & gives the biggest hug that makes you feel all warm inside. He wears you down (in a good way) with his endless questions, endless pointing, endless calling of your name for attention. He WANTS to play with you, talk to you, look at you, just be there. Imagine that. He wants to play & interact with MM so bad. He tried so hard to engage her, but she was having none of it. It was so cool & so heartbreaking at the same time.

I am so used to MM with all her little quirks and how far behind she is that I "forget" what a "normal" child is like. I guess I don't really "forget", I just have never experienced "normal" from a parenting standpoint.

It makes me feel trapped. She doesn't like to go anywhere. She doesn't like anyone coming here. DH doesn't get that much time off from his work. We have no one besides my mom that could really stay with her if we wanted to go on a vacation or just to visit family. I want to scream & cry that this isn't fair. It's not like I want to go to Vegas or Jamaica. I just want to spend a few days with my family & enjoy it. It is so much work & so stressful.

She seemed to do a little better this visit than last. One can only hope that each time she will adjust & get better.


Ellen said...

Hey there. I know exactly how you are feeling, I have written about comparing Max to other kids. I actually am about to post a blog on whether people ever wonder what it would have been like if their child had been born "normal."

Like MM, for the longest time Max didn't like to go places, but as he's gotten older he's changed. Give it time. I wonder, are there are any programs near you that involve having a teen come and visit? Having someone come in regularly for a bit would be good for both of you. Not Vegas or Jamaica, but something. :)

Colleen said...

((hugs)) hopefully like you said every visit gets better with time!

Angela said...

(((hugs))) I miss you too. I have no idea what's up with the board except all of us must be up to something else! lol.

jamie said...

i was just thinking about almost the same parents are coming to visit from maine this weekend and i LOVE to have them here...but it always throws us so off our routine(and milo really needs a routine), that every night when they leave to go to their hotel, i try not to show it but i am pretty much an anxious mess...but it's worth it to have them here.

katherine said...

I LOVE YOUR BLOG! it's reminding me of so much AND I have never met anyone else dealing with autism AND cerebral palsy! It's a doozy, right?! we are soul sisters! Much love to you! Katherine