(no subject)
I have been SO down since the last post. I have done more research on Gillian's sensory stuff and we *think* its something called "Sensory Integration Dysfunction" which is common amongst preemies or children who have been hospitalized for an extended period. I got a book about it, and have been reading up. I have purchased some toys to help her too. We do activities daily-I am trying to help her in any way I can. So far the past couple weeks she has made some improvements.
I had a meeting with the special ed folks about her on Friday. In some areas she scored like 1 yr 9 months-of course, this is only after seeing her maybe twice. The speech therapist told me she has already seen quite an improvement in her skills in just a month, since she evaluated her. They told me not to get upset about the score, that they just needed to have something to start. They realize, in actuality, that she is further along than what they show. I think I have been so upset because , back in May when they exited Gillian from her Early Intervention, I really honestly thought things were okay. I thought basically we were "home free." Realizing that she will still need help and facing reality have been hard. It has been hard seeing her vs. the other kids at the preschool-seeing how delayed she really is.
The special ed folks told me what I am going through is normal, its like a grief process, an acceptance process. I felt good knowing I am not going crazy. I lost it last week when I was picking up my son at cub scouts. A friend of mine there could tell that I was not myself. I just cried on her shoulder and she talked to me for a very long time. She was a special ed teacher and had some insight. I am so grateful for the support I am getting from these few people around here. My friend, whose child is epileptic, has given me lots of support too. She has gone through this stuff too. The director of Gillian's preschool was my son's Kindergarten teacher, and she was at the meeting and I felt good about it, as she knew Gillian's story. She shared lots of Gillian's ups and downs with me, and was constantly wanting updates on her during her hospital stay.
I spoke to a good friend last week and I was heartbroken. I asked her if Gillian looked different than the other kids. she said "Well yeah, you can tell there is something wrong with her! You can tell she is different!" That destroyed me. I had never had such emotional pain.....I felt like my heart was torn up into a million tiny pieces. I see Gillian as a 2 year old-I know she is 3, but I just see a 2 year old.
She still has that baby face. I think if I told someone she was 2 that would be about right, but I don't see her being different other than that. Being that she doesn't "focus to task" and runs away from teachers, people, etc......makes her seem younger than 3. That is part of the sensory stuff. There is so much to this "Sensory integration dysfunction" that its overwhelming. So much is making sense now.
Its probably why she won't keep her glasses on, and why she gags on certain foods. These kids are particular about stuff on them-like she hates having stuff on her hands is an example. She will be getting some Occupational Therapy, which should resolve lots of this. Plus I am working with her too and I just hope it helps. I am not feeling quite as sad-still a bit heartbroken, but not crying. I just have to accept this. I know I need to be so excited for Gillian and the progress she has made since she was born-she has climbed mountains. She has overcome SO much. Over the weekend she was running all over and I just smiled, happy that she can just even do that. Even so, its hard. I have seen other kids her age and I get so sad...........like I said, its hard realizing your kid is not where they should be developmentally :(
I knew having a preemie was going to be hard......I just hope she can catch up! :(
I had a meeting with the special ed folks about her on Friday. In some areas she scored like 1 yr 9 months-of course, this is only after seeing her maybe twice. The speech therapist told me she has already seen quite an improvement in her skills in just a month, since she evaluated her. They told me not to get upset about the score, that they just needed to have something to start. They realize, in actuality, that she is further along than what they show. I think I have been so upset because , back in May when they exited Gillian from her Early Intervention, I really honestly thought things were okay. I thought basically we were "home free." Realizing that she will still need help and facing reality have been hard. It has been hard seeing her vs. the other kids at the preschool-seeing how delayed she really is.
The special ed folks told me what I am going through is normal, its like a grief process, an acceptance process. I felt good knowing I am not going crazy. I lost it last week when I was picking up my son at cub scouts. A friend of mine there could tell that I was not myself. I just cried on her shoulder and she talked to me for a very long time. She was a special ed teacher and had some insight. I am so grateful for the support I am getting from these few people around here. My friend, whose child is epileptic, has given me lots of support too. She has gone through this stuff too. The director of Gillian's preschool was my son's Kindergarten teacher, and she was at the meeting and I felt good about it, as she knew Gillian's story. She shared lots of Gillian's ups and downs with me, and was constantly wanting updates on her during her hospital stay.
I spoke to a good friend last week and I was heartbroken. I asked her if Gillian looked different than the other kids. she said "Well yeah, you can tell there is something wrong with her! You can tell she is different!" That destroyed me. I had never had such emotional pain.....I felt like my heart was torn up into a million tiny pieces. I see Gillian as a 2 year old-I know she is 3, but I just see a 2 year old.
She still has that baby face. I think if I told someone she was 2 that would be about right, but I don't see her being different other than that. Being that she doesn't "focus to task" and runs away from teachers, people, etc......makes her seem younger than 3. That is part of the sensory stuff. There is so much to this "Sensory integration dysfunction" that its overwhelming. So much is making sense now.
Its probably why she won't keep her glasses on, and why she gags on certain foods. These kids are particular about stuff on them-like she hates having stuff on her hands is an example. She will be getting some Occupational Therapy, which should resolve lots of this. Plus I am working with her too and I just hope it helps. I am not feeling quite as sad-still a bit heartbroken, but not crying. I just have to accept this. I know I need to be so excited for Gillian and the progress she has made since she was born-she has climbed mountains. She has overcome SO much. Over the weekend she was running all over and I just smiled, happy that she can just even do that. Even so, its hard. I have seen other kids her age and I get so sad...........like I said, its hard realizing your kid is not where they should be developmentally :(
I knew having a preemie was going to be hard......I just hope she can catch up! :(