Unfortunately, I feel like we will never escape.  My daughter....Gillian....Where do I  begin?  Well, I guess I can begin with what at the moment is the most pressing which is how she reacts to her baby brother.  I knew it would be difficult after he was born.  I knew I would have to suspend him from the ceiling to keep him safe but damn!  Will he ever get old?  Will he ever not be a novelty to her anymore?  She just love and adores him so much that she literally can't keep her hands off of him. She is just obsessed with him.  If I or her Daddy are holding him she HAS to be touch, poking, kissing, stroking him too or even if he is put in his swing or exersaucer it is constant NONSTOP!!  Therefore, when Gillian is around, Blake has to be with in arms length or in his crib with the door shut to his room.  She can not be trusted!  She will cover his face, throw a toy on him, hit him in the head with a ball, pick him up, jump on him, feed him whatever she is eating...the list goes on...My poor baby!  The funny thing is, she is not really that jealous.  She is not doing any of these things because she is jealous or to hurt him on purpose.  She absolutely adores her brother.  She tries to "help" but ends up hurting him b/c she doesn't get that he is a baby.  She just doesn't understand.  She doesn't feel pain like a normal kid and doesn't have any empathy so she doesn't care.  She just loves to hug, kiss, love and help him to death!  Like Saturday I was feeding Blake baby food in him bumby thing and I went to the sink to rinse off a rag to clean his face better and in that moment she took his spoon scooped up some baby food and shoved the spoon down his throat.  He gagged and I looked and the spoon was sticking out of his mouth and he was turning red.  I yelled and ran over to save him.  I swatted her butt and put her in the corner.  I told her to never put anything in Blake's mouth.   I scared her to death!  She had no idea that she was doing anything wrong.  But then yesterday evening she was eating nachos and she put a chip in his mouth.  Of course, I was right there cooking dinner so I scooped it out of his mouth and again told her NOT to put anything in her brother's mouth but 2 seconds later she did it again so she got the corner.  She just doesn't get it!!  What do you do??  I just can't put him down!!  I have to keep him in a baby wrap or his bed that's all there is to it.  It's not fair to him but it is the only way to keep him safe.  Then I feel bad b/c unless he is asleep I can't spend any one on one time with her because I always have to hold him.  It  will get better b/c he is getting bigger everyday.  Soon he will be bigger than her and will be able to defend himself.  

On a good note, Gillian is doing soooooo much better with the fits.  There are fewer and farther in between and less severe.  She is much much better when she in on her medication.  She can actually concentrate and look at a book and even do a project with me.  She is also much less all over her brother.  I just wonder if she will ever talk.  How much does she understand of what I say to her?  Will she ever develop empathy?  Will she ever understand that it hurts when she runs over my bare foot with her tricycle?  Will she ever be able to tell me what she wants to eat?  Or even how she is feeling or what she did at school today?  Am a awful to wish that she was "normal"?  I pray every single day that God will cure her of this awful autism.  I hate it!  I love my daughter with all my heart more than my life but I hate autism.  Is it awful to hate something about my child that she can't help or change?  She is a precious, beautiful, sweet child but sometimes you can't see that part because of all these autistic behavior just take over.  I feel like I've been raising a "terrible two" for almost 3 years. 

And what is with the breath?  Ever since Gillian got on her new medication the poor baby's breath smells like she has been eating a poop flavored popsicle.  It is awful!!  We brush her teeth, give her tictacs even those fresh breath drops and nothing helps!  I'm going to talk to the Dr about it on Wednesday. 

I just hope can't wait to get Gillian tested.  FINALLY!  We have been trying to get Gillian into this developmental pediatric hospital.  The wait is at least a year.  Well right before the holidays we got a letter from Baylor College of Medicine (a medical school here in Texas) & Texas Children's Hospital asking if we were interested in participating in a study on autistic kids and their families. This was one site out of 13 sites all over the country.  They wanted to include 2000 families all across the country.  This was going to be a study to see if about a certain autism gene or something to that effect.  After doing the prescreening and talking at length to a lady, Kristy, about my family and Gillian in particular it was determined that Gillian didn't qualify b/c she doesn't have a full blooded sibling over the age of 4.  Gillian has Blake who is 4 months (full brother) and a half sister who is 16.  Well, I guess the lady, Kristy felt sorry for me or something b/c she asked the researchers if, even though we don't qualify for the study, they would go ahead and do all the testing on Gillian.  Through the study they were going to genetic test us all, neurological, cognitive and language test Gillian and determine where Gillian is on the Autism Spectrum.  This was all going to be free of charge b/c it was going to be part of this study.  Well since we don't qualify for the study they will bill my insurance AND they will get us in in February instead of having to wait a year.  Although I do think it would have been cool to be a part of the study I am so excited to be able to skip the 1 year wait!  I talked to Kristy yesterday and she said that she would call me by the end of the week and let me know when in February that we could do the testing.  So I can wait a week.  I am just so excited be able to get her tested.  I think there is more going on than I know.

I just feel like we are all trapped in this land of autism....We've been so lost...Not knowing where to go or what to do...Now I feel like I've been give a direction.  What I want is a map!

Add A Comment

Comments:

Be the first to add a comment below.
Want to leave a comment and join the discussion?

Sign up for CafeMom!

Already a member? Click here to log in

close Join now to connect to
other members!
Connect with Facebook or Sign Up Using Email

Already Joined? LOG IN