I know it's been a long time since I've written. A lot has changed since then. I've had my hands full with 3 little kids. Especially with Ginger who cried all the time for the first 5 months of her life and Oli had some adjustment issues dealing with a fussy baby.
Oli has made some amazing physical progress recently. She can now take steps on her own. We still have to be in front of her to get her to do it since she doesn't have an adapted mobility device yet. When she's more stable and her balance improves we will get one for her. She can also stand on her own now and does some modified crawling, with her hands in front of her and her head on the floor. She really is into exploring now.
We recently took her to Philadelphia, PA to try and figure out if she was autistic or not. With blind children it's very hard to get an accurate diagnosis since many of their behaviors mimic what autistic kids do. These doctors are specialists that deal with determining whether a blind child is truly autistic. Unfortunately, she was diagnosed as having autism. One more hurdle for her. Right now I feel that the autism it what's holding her back and not so much the blindness. She still isn't talking at all and she went for a period of about 4 months where she didn't say anything at all. It was heartbreaking. A lot of times it seems like she's in her own little world self stimulating and it's very hard to reach her. Now she is starting to mimic a few words and babble again. She isn't making great progress in school either. She hasn't met any of her IEP goals yet. I have a meeting with the school on the 18th to adjust the goals to more appropriate things that she needs to do first before we can move onto bigger things. I'm hoping I can have enough of an argument that they will allow her to attend the school for the blind when she goes to kindergarten. Her Philadelphia doctors said that they would help us fight for it. They really believe that she needs to be in that school.
I did find an autistic school for her. We go for her tour and consultation on the 13th and then they will schedule an assessment to determine how many hours she needs. Typically during the school year she would go to her PPCD program in the morning from 9:45-1:45 and then she would go from there to the autistic school. The type of therapy she needs for autism is called Applied Behavioral Analysis. I don't know a whole lot about autism yet but have joined a few autistic support groups that are here in Austin and actually met one mom online that is the parent of one of the boys in Oli's class. We're going to have a play date next week. I'm so excited!
So... not such good news lately. She just has a lot going on. Blindness, autism, and some mental retardation. It just breaks my heart and sometimes I have such a hard time dealing with it. It's my baby and I hate to see that life is so hard for her. Especially when people make stupid comments like why doesn't she talk, why does she shake her head and flap her hands. On top of that, part of her deletion has caused her hair to grow extremely slow so everyone thinks she's a boy. Even when she wears pink!! Dumb people!! Her hair is growing it's just so slow.
She has to stay in the hospital for 2 days next week so they can do a 48 hour EEG to make sure that she's not having any seizures that we're not seeing. Hopefully she won't. Then she needs to have another hearing screen to make sure her hearing is okay. She's at high risk of having hearing loss. They have to put her to sleep for this procedure because it's a high tech test that measures her brain waves against sound.
We just need a lot of prayers for her. Prayers that she is not having seizures, prayers that he hearing is normal and that this ABA therapy will unlock the door that will lead to communication for her. Prayers also for her family that our struggles are not to great and we continue to focus on what really matters. Loving and fighting for our incredible daughter.
It’s Great to be 8!!
5 months ago