My youngest was a preemie -- only a few weeks, and he certainly didn't face the challenges your little guy does, but he still has delays, though not as severe as his brother and sister (maybe -- he may be going the autism way, too). One thing that struck me in your post is the label issue -- what will delaying it mean? Will he still get the services he needs if you don't get a label, or is the money the school receives tied to a label? My kids had/have a designation of "Preschooler with a Disability" on their IEPs. The school district prefers not to do a more definite label like "Autism" at such a young age, though parents can ask for it (whether or not the district goes along with it depends on a bunch of factors -- and the few fights I personally know about involve this). Evidence *seems* to indicate that the earlier intervention begins, the more progress a child can make, so that has always been my tool for judging whether or not to go ahead with various types of testing. If test results will impact the services one of my kids receives, I am more likely to do it. I've been fortunate enough to work with people who truly care about my children, so I feel I can ask them about this, but I also ask questions on my local Parent to Parent listserv to hear from people who have experience with the same issues in the same district, and I frequently call my advocate since she has years of experience working in my district and knows the peculiarites of the system.
Anyone with preemies?
Hi everyone,
I have posted to the diapering board, the babywearing board and the extended nursing board, but this is my first post here (I think). I have an almost 4-yo adopted son who was a 26-week, 1.7 pound preemie and he has lots of medical and developmental struggles as a result. He had a tracheostomy for two years (had surgery to have it removed a year ago), was on a ventilator for two years and supplemental oxygen for three years, is still G-tube fed but is starting to try to drink from a cup, has severe GERD with two Nissen procedures in the past, is legally blind due to ROP but has some peripheral vision and does quite well with glasses, has a major oral aversion and also pretty significant sensory issues, is non-verbal, and has chronic lung disease with frequent breakthrough symptoms requiring prednisone and/or antibiotic treatment (he gets scheduled nebs every 4-6 hours). I was just wondering if there might be others out there with children with similar needs. At this point my son is developmentally quite scattered, testing very low in the communication areas (no speech yet, not pointing or gesturing, no real speech sounds but does make some non-speech noises such as laughing, and a few other sounds), and with his highest scores being in the gross motor area since he is able to walk and nearly run, but does have low muscle tone and is not on target here either since he does not kick a ball, climb stairs unassisted, jump, etc. I had him attend an integrated preschool this past year where he receives PT, OT ond ST and he is starting to show some interest in playing with other children, mostly going up and down the slides on his playground or rolling trucks and balls back and forth. I also have an OT coming to our home to help with his feeding issues. I guess I am at the point of wondering how to best optimize his educational and therapy programs before he is of kindergarten age, how to balance his medical needs with his socialization needs (I am SOOO paranoid of cold/flu season) and also how to balance his needs with the needs of the rest of the family? How have others handled this? Our baby also has reflux and is a pretty high needs little guy and I know I can't be superwoman but I never feel like I am doing enough, especially for our older son. I know those are not questions specific to families with preemies, so any feedback is appreciated from anyone. Also, at what point is it best to consider formal testing for mental retardation or any other specific diagnoses? Our EI team was pushing for the psychological testing before he started preschool, but I declined because I wasn't ready to have him labeled in any way - I wanted him to have some time to be around typical children, and to just have some time after his trach tube was removed to play and see what he could do before all the labeling started. He has done quite well over the past year and I am happy with his progress, although his delays are definitely becoming more apparent and I expect he will need more support as he gets into kindergarten and beyond. Any thoughts on this? Anyway, this has gotten pretty long - sorry! Thanks for any responses!
I have posted to the diapering board, the babywearing board and the extended nursing board, but this is my first post here (I think). I have an almost 4-yo adopted son who was a 26-week, 1.7 pound preemie and he has lots of medical and developmental struggles as a result. He had a tracheostomy for two years (had surgery to have it removed a year ago), was on a ventilator for two years and supplemental oxygen for three years, is still G-tube fed but is starting to try to drink from a cup, has severe GERD with two Nissen procedures in the past, is legally blind due to ROP but has some peripheral vision and does quite well with glasses, has a major oral aversion and also pretty significant sensory issues, is non-verbal, and has chronic lung disease with frequent breakthrough symptoms requiring prednisone and/or antibiotic treatment (he gets scheduled nebs every 4-6 hours). I was just wondering if there might be others out there with children with similar needs. At this point my son is developmentally quite scattered, testing very low in the communication areas (no speech yet, not pointing or gesturing, no real speech sounds but does make some non-speech noises such as laughing, and a few other sounds), and with his highest scores being in the gross motor area since he is able to walk and nearly run, but does have low muscle tone and is not on target here either since he does not kick a ball, climb stairs unassisted, jump, etc. I had him attend an integrated preschool this past year where he receives PT, OT ond ST and he is starting to show some interest in playing with other children, mostly going up and down the slides on his playground or rolling trucks and balls back and forth. I also have an OT coming to our home to help with his feeding issues. I guess I am at the point of wondering how to best optimize his educational and therapy programs before he is of kindergarten age, how to balance his medical needs with his socialization needs (I am SOOO paranoid of cold/flu season) and also how to balance his needs with the needs of the rest of the family? How have others handled this? Our baby also has reflux and is a pretty high needs little guy and I know I can't be superwoman but I never feel like I am doing enough, especially for our older son. I know those are not questions specific to families with preemies, so any feedback is appreciated from anyone. Also, at what point is it best to consider formal testing for mental retardation or any other specific diagnoses? Our EI team was pushing for the psychological testing before he started preschool, but I declined because I wasn't ready to have him labeled in any way - I wanted him to have some time to be around typical children, and to just have some time after his trach tube was removed to play and see what he could do before all the labeling started. He has done quite well over the past year and I am happy with his progress, although his delays are definitely becoming more apparent and I expect he will need more support as he gets into kindergarten and beyond. Any thoughts on this? Anyway, this has gotten pretty long - sorry! Thanks for any responses!
1 - 5 of 5 Posts
Thanks for your response! I was told by our EI staff that the services would be the same as far as the preschool program with or without the psychological testing. We did have the other testing done for his IEP, everything except the psychological component - actually, both my dad who has been involved with the public school system his entire career as a teacher and administrator as well as a couple of therapists I spoke with felt it may be best to delay that part of the testing - he doesn't have to have it until he is ready to enter kindergarten. However, as his delays become more pronounced I am just wondering if it would be worthwhile to have the testing done sooner in order to tailor his program in any way. Since his services will be available regardless, and I feel they did a great job this past year, is it beneficial to have the labels at this point? Also, at what point is it best to consider pulling him from the integrated classroom and go into a more structured setting? I didn't want him to be in a classroom where he was the "leader" in modeling behaviors and play skills for at least a year or two, which was what he would have been in the alternative classroom, but he would have more in room support as far as therapists and aids. I am happy with his current placement in that regard, and at this point he is starting to show more interest in other kids but does not yet mimic at all with playing, copying movements, etc. I am assuming since there is no real effort at communication other than bringing toys to us for help with turning them on that his lack of communication is more cognitive related rather than vision or hearing related (he tested normal to borderline with hearing at his last eval). I know I can discuss all this with his teachers and therapists, just looking for any thoughts or experiences from other parents. I haven't found any local groups and don't have a lot of chance to get out to local gatherings anyway with our two kids at this point. I hope I'm not too confusing here - I'm pretty tired tonight and am having trouble organizing my thoughts. Thanks again!
Quote:
I've got a preemie...a 27 weeker, also with CLD, and we battled GERD. He's doing really well now.
I totally know what you mean about cold/flu season, and IMO, you are right to be paranoid. The flu put us in Children's hosp. for 8 days, and it really took him months to recover lung function..thus using all his resources on breathing, not on developing. Our pediatrician called off many therapies during the winter months because it wasn't worth the setbacks when he got sick. Fortunately, he is getting much better at fighting stuff off, but it's still pathetic how easily he gets sick. Because of this, I also think you were right to hold off on a lot of testing. My baby now that I have had him healthy for several months is completely different. He went from major delays across the board to being almost on target, if small physically.
It's also really hard here to balance the needs of the others. My oldest is not really my oldest, he's got an autism spectrum disorder, and he requires so much time. On top of the medical needs of a preemie, it's pretty tough to give my perfect middle girl a lot of special attention. I do try, but it's hard. I have to say though, everywhere I go I get compliments on how independent, confident, and kind she is, so apparently neglect as a result of a special needs sibling has some positives as well. :-( Do this best you can.
-Kimberly
Originally Posted by crazycat Hi everyone, I have posted to the diapering board, the babywearing board and the extended nursing board, but this is my first post here (I think). I have an almost 4-yo adopted son who was a 26-week, 1.7 pound preemie and he has lots of medical and developmental struggles as a result. .... I guess I am at the point of wondering how to best optimize his educational and therapy programs before he is of kindergarten age, how to balance his medical needs with his socialization needs (I am SOOO paranoid of cold/flu season) and also how to balance his needs with the needs of the rest of the family? How have others handled this? Our baby also has reflux and is a pretty high needs little guy and I know I can't be superwoman but I never feel like I am doing enough, especially for our older son. .... I wanted him to have some time to be around typical children, and to just have some time after his trach tube was removed to play and see what he could do before all the labeling started. ! |
I totally know what you mean about cold/flu season, and IMO, you are right to be paranoid. The flu put us in Children's hosp. for 8 days, and it really took him months to recover lung function..thus using all his resources on breathing, not on developing. Our pediatrician called off many therapies during the winter months because it wasn't worth the setbacks when he got sick. Fortunately, he is getting much better at fighting stuff off, but it's still pathetic how easily he gets sick. Because of this, I also think you were right to hold off on a lot of testing. My baby now that I have had him healthy for several months is completely different. He went from major delays across the board to being almost on target, if small physically.
It's also really hard here to balance the needs of the others. My oldest is not really my oldest, he's got an autism spectrum disorder, and he requires so much time. On top of the medical needs of a preemie, it's pretty tough to give my perfect middle girl a lot of special attention. I do try, but it's hard. I have to say though, everywhere I go I get compliments on how independent, confident, and kind she is, so apparently neglect as a result of a special needs sibling has some positives as well. :-( Do this best you can.
-Kimberly
Quote:
I understand. If you're interested in the Parent to Parent online group, here is their website: http://www.p2pusa.org/BottomtoHome2P2PUSA.html
Our local listserv is very active, and they have been very helpful.
Originally Posted by crazycat I haven't found any local groups and don't have a lot of chance to get out to local gatherings anyway with our two kids at this point. |
Our local listserv is very active, and they have been very helpful.
1 - 5 of 5 Posts
- This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Mothering Forum
A forum community dedicated to all mothers and inclusive family living enthusiasts. Come join the discussion about nurturing, health, behavior, housing, adopting, care, classifieds, and more!
Full Forum Listing
Explore Our Forums
Recommended Communities
