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brownbook

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  1. brownbook

    Am I a Scrooge?

    I donate generously to charities. I'm a bleeding heart liberal. Last week early in the morning I drove by a man sleeping on the sidewalk in front of an empty store. I stopped and put $40.00 under his covers. Yet when I read articles about women who had a rough upbringing, struggle through hard times, get some help, were homeless, are now taking college classes, etc., how The Season of Sharing helped them....then the next sentence is she's now living in an apartment with her 2 year old and 6 month old I want to scream.. I can't understand why a women in those circumstances would think having children is a good idea? Makes me want to NOT donate to The Season of Sharing! These stories take place in liberal urban areas. There are Planned Parenthood facilities and low or no cost health clinics available for birth control. Maybe the first pregnancy was when she was still struggling, but the next one...after she was finally starting to get her act together??? Am I a Scrooge?
  2. brownbook

    The Question Mark Equation

    Help, my name is brownbook and I am an exclamation point, question mark, abuser. Please HELP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (However I am good about paragraphs!!!!!!!!)
  3. brownbook

    Previous paeds nurse and now Parent with special needs child

    Hi, how is Kyle? We will visit my grandson (and granddaughter) in about three weeks. His parents say they still notice, think, he is too much internally, preoccupied. Obviously they can't spend as much 1 : 1 time with him now that he has a sister. They are hiring a nanny. Lucky they can afford it and they hope she will be able to do more 1 : 1 activities with Isaac. My other grandson AJ, six 1/2 years old. His mom did a big push to have doctors check out that he was still sometimes incontinent of urine during the day. They did some tests, she had to keep a diary, and they say he has (unfortunately I forget the exact phrase) a ?????? something ?????? bladder, and put him on ditropan. He has only been on it about 5 days. I don't think he has had any accidents during the day, less bed wetting. I kind of don't like him to be on meds, really stupid on my part, just some vague hazy feeling that everybody is over reacting, medicating for ???? minor ??? problem. But even as I type this I think that is wrong on my part. The ditropan is working. I just certainly hope in a few months, years? that he won't need to be on it. Won't need to be on it the rest of his life?? Again, I don't even know why that would be so bad if he was!!!! I need to get over it!!!! "Better living through chemicals." It didn't make me feel better that his mom told me, "The doctor said to stop the ditropan if we notice his personality changes." So every time he gets angry (he is a pretty easy going kid) I think, "Oh my gosh, the ditropan is changing his personality!!!" But really he is fine. I am glad for the ditropan and should be thankful we have modern medicine and drugs instead of fretting!!!! So with all that, how is your daughter doing?
  4. brownbook

    Previous paeds nurse and now Parent with special needs child

    Thanks so much for the alarm watches information. I will check out those web sites and the watch. You are so thoughtful!!! There is so much information, treatment, parent support groups, (parent pressure on the school system!!!!), for autistic children. It would be a good think for Kyle to get some of the interventions and special schooling that is available for them!!! Tell your husband even if Kyle isn't autistic why shouldn't he get the interventions offered for autistic children!!!!! Corinne
  5. brownbook

    Previous paeds nurse and now Parent with special needs child

    Hi, great about your mum. Just sending her the bills, hope that goes well. My daughter and son-in-law are comfortably well off and his side of the family is comfortably well off (well, I am comfortably well off also) anyway I'm not sure how much help to offer my daughter financially. Our schools, country, are getting so bad financially all I read about is cutting back educational funding, cutting back funding for special education classes, etc. so I do think of offering them to pay for private therapy if the schools really have to cut back. My other 6 1/2 year old grandson is also STILL having problems with wetting his pants!!! His mom, (they both live with us) is mainly involved. I try not to meddle too much, she is a good mom. He has been to specialists. I don't know the details, something about he was full of poop, they put him on a daily laxative, and then she is supposed to keep a diary, measure his pee, and keep track of when his pants are wet. ???? Well, he has been pooping a lot!!!! (Thankfully NOT incontinent of stool!!!!) But doesn't sound like your daughters issues at all, I'm not trying to imply that!!!! Just letting you know normal kids and parents have to deal with these things!!!!! I swear every other time I talk to Isaac's mom it is good news, bad news. Last time we talked they said he seems too be doing to much self stimulating, too internally preoccupied, he will play with shadows on the floor for hours as opposed to interacting with other toys or them. But then they are busy with the new baby and honestly I know when Isaac stays with us, it is so easy to let him play with shadows, he will entertain himself for hours. But of course that is not good for his development. Him mom said something about it was like autistic behavior which was actually good because they might get more therapy, more interventions, if he can get diagnosed under the autism umbrella. Isaac's mom said they noticed a difference in his behavior just having her mother-in-law down for a week to help out. Isaac interacted more with her around, and of course she had more time to do so. I know parenting is hard, but I worry Isaac would be doing better if his parents could commit to ????? 1/2 hour 2 - 3 times a day of concentrated interacting with him. I say that with the caveat that we have two dogs, and paid a dog trainer a lot of money to teach us how to have well mannered dogs. Do we spend the 10 - 30 minutes each day we should to work with the dogs. We do NOT. Life just seems to get in the way of our good intentions!!!!!! (The dogs aren't any problem, just normal dogs, just would like them to be better at come, sit, stay, etc., responses!!!!!)
  6. brownbook

    Previous paeds nurse and now Parent with special needs child

    Hi, I just love your phrase that Kyle has heaps of personality. I think much of my depression about Isaac was this image of his parents and he in a physically and emotionally dark place with a disabled child who had no personality, could not interact with his parents. Isaac does so many cute things. I love him dearly. PLEASE PLEASE PLEASE remember there is no easy magic solution. I DON"T want to get your hopes up. I tried a few Internet sites when I first learned about Isaac. I honesty didn't find much. All I wanted was a sympathetic friendly place to vent my feelings. I found that really hard to find!!!! HOWEVER I did not know of this site. MySpecialNeedsNework.com. Again I don't know if it has any miraculous help, ideas. But give it a look. I put "feeding difficulties disabled children" in my computer search engine. Amazon listed several books. AGAIN I don't know that they would be helpful or solve your problems. It always seems hard to find someone with the exact same problem. The one book I glanced at was feeding issues with a child with cerebral palsy and may have dealt with issues that have nothing do to with Kyle's feeding issues!!!! Isaac is in the California public school system for special needs children since he turned 3. The whole public educational school system, support for families, children, with disabilities seems to have a lot to offer. I think his parents are happy with what the school is offering. Whatever you decide for Kyle, Montessori or the public school, they will both be good, kind of choosing between two good options. Maybe try Montessori if he gets in, then, if after a while it doesn't seem to be a good match put him in public schools? I like the idea of socialized (government funded) medicine. I know no health care system is perfect. President Obama is trying to turn our health care system, health insurance mess, towards government funded. Of course people are kicking, yelling, and dragging their feet!!!! I know there are problems with any system.
  7. brownbook

    Previous paeds nurse and now Parent with special needs child

    Hi, great to hear from you. Not a lot of time to reply right now, I just love the cat story. I'm not good with computers either!!!! Maybe someday I will manage to send a picture of Isaac. Corinne (my real name)
  8. brownbook

    Previous paeds nurse and now Parent with special needs child

    Hi, I have been thinking A LOT about you. I kept doing Internet searches about feeding issues and disabled children. I did find a few books, and there are Google and Yahoo groups for families with disabled children that did mention feeding problems. I hate to give you false hope. It sounds like a REALLY difficult issue you are having with your son. But as I mentioned, and it seems true for me, nurses are problem solvers. Somewhere deep inside of me I think there has to be some small steps, some small solutions that will gradually lead to bigger solutions to your sons feeding issues. My brother worked with disabled children and was really supportive to me when Isaac got his diagnosis. He mentioned to me about NOT having false hopes. I found it to be true with Isaac, how devastating the false hopes were when they did not come true. The false hopes the he would walk soon, the false hope he would be just a few months behind other children, the false hope that getting his cross eye surgery or his glasses would really make a difference in how he interacted with the world, etc. So I DON'T want to give you false hope. Yet still???? maybe some tiny baby steps can be made. I don't know much about Kyle's feeding problem, his disability, or what you have tried. If you are interested and can't find any parent support sites or books I will let you know what I found.
  9. brownbook

    Previous paeds nurse and now Parent with special needs child

    Your problems and issues are worse than my daughters. I only have a minute to write, I'm off to work. I will be thinking of you. Corinne
  10. brownbook

    Previous paeds nurse and now Parent with special needs child

    Hi, I hadn't even realized you had replied. Or I guess you replied just after I checked last time??? My grandson, Isaac,, I visit them about twice a year, and they come up here maybe once a year, so not being with him, or them, day to day, I don't see all the issues. I have to kick myself to not think "Oh Isaac is easy, I don't have any problems caring for him, etc.," when I don't have to live with him 24/7 for the past 3 1/2 years!!!! I know they have feeding issues with him. If a piece of bread was in front of him he would just stuff the whole thing in his mouth and try to swallow it, wouldn't chew. They were working on his feeding with his special education teacher when I visited in March. I know they were working with food that had more consistency, stuff he would have to chew like crackers, not just oatmeal or mashed up soft food. I know they expressed their frustration about feeding him. Takes a lot of time out of a busy day to have to feed him 3 times a day!!!! I try to appreciate what they are going through. I feel so frustrated for you that the feeding clinic can't come up with strategies!!!!!! I heard once that nurses are natural problem solvers. I can't believe there isn't a maybe not perfect wonderful, fix everything solution, but there must be some ideas, strategies!!!! So yes feeding was, is, a big issue last time I was visiting. But I guess, think, it will eventually resolve itself, like a abled child might take 6 months to go from being fed to feeding their selves, a disabled child might take ????? 2 - 3 years! Sounds awful put that way, but one thing about being a grandmother, somehow you really see to long range, future, down the road outlook with children. It doesn't bother me to say, think, by the time he is 6 years old he will have this feeding issue resolved. I joked so many times with my abled grand son's mom (the one who still has accidents!) when she expressed the usual parent concerns, "Oh as long as he stops doing that by the time he goes to college he'll be fine." My biggest concerns are intellectual. Will he talk, understand, communicate? But when Isaac's mom called she said with pride, "I told him to go get his ducky book for us to read and he got it and brought it to me." He babbles but like a 1 - 2 year old does, he might say baba, mama, dada, but not always consistently connecting the sounds/words to bubbles or mom or dad. You never told me if the MRI showed any definite cause for your sons disability? My daughter isn't the best at replying to my e-mails but I will e-mail her now for any feeding ideas they learned.
  11. brownbook

    Previous paeds nurse and now Parent with special needs child

    Hi, my daughter is 39 years old. (BTW I was a young mom, I'm not THAT old, ha ha) So I was surprised they even had one kid, then to get pregnant again seemed scary to me. When I first heard she was pregnant the second time I had bad flash backs to our grandsons diagnosis and was really depressed. But got over it and now it seems good. Sometimes I call and she seems tired, fretful, worried, hard to handle two kids, then I call on a good day and she is perky and things seem good. I do have another grandson 6 1/2 years old who still occasionally wets his pants and bed!!! It seems easy to not be to concerned about your daughter, but then again little boys are really different from little girls! It is easy and trite to tell you not to worry about your daughter, she will be fine, but gosh isn't that exactly what pediatricians told my daughter when their son wasn't sitting up, rolling over, etc. at the appropriate age. Not that your daughter has potentially "serious" problems but you know what I'm trying to say??? Gosh, try not to worry about her. I guess, think, she can sense your worries, so that is like telling someone to not think about elephants! Doesn't exactly work!!!! Do you share with her that sometimes you get sad about your son???
  12. brownbook

    Previous paeds nurse and now Parent with special needs child

    Thanks for your kind words rn/writer. dreamyjean I hope you and your family are well and had a nice holiday. Please let us know the results of the MRI. My daughter had a baby girl in Feb. She is healthy, of course achieving developmental milestones won't show up for several months!!!!! It is kind of the reverse of your situation with your daughter born first then your son.
  13. brownbook

    Previous paeds nurse and now Parent with special needs child

    Hi, I keep thinking your husband is more optimistic. I just can't even think the word optimistic in regards to my grandson. I don't know why. It can't explain, or put into words, but optimistic just wont fit in my vocabulary about him!!!! About a year ago I was watching a show about WW II concentration camps. Just watched a few minutes of it, and thought "if people can survive that horror than I should be able to survive, live with, my grandsons diagnosis." That is how awful I felt!!!! I think I imagined my daughter and son-in-law living in a sad, dark, dreary, house with their son. I imagined they would never laugh, never feel the overwhelming love for their son that parents naurally have for their "abled" children. The joy of first walking, talking, any milestone, is tinged with heartache knowing it just emphasizes how delayed he is and the thought "is he going to met the next milestone or will this be as far as he develops." However I now know he gives them joy, they laugh at his antics. They live about 600 miles from me so I just visit a few times a year. Well, I don't mean to go on about me. As I said any fears, tears, hate, you have poor it out to me. I don't think there is any feeling you will have that I haven't felt. I think it would be real hard for us to not know what the cause was!!!!!! I pray and hope you find out, I don't know why, it won't make any difference, but it just seems easier to know!!!! Your co-workers are correct, I hope you are able to talk with and get support from them. In today's society, disabled are "main-streamed", and certainly all the early intervention that is now available helps them reach their potential. Thank you for responding, it does me good to reach out to you, I hope I can help you a little.
  14. brownbook

    Previous paeds nurse and now Parent with special needs child

    By 8 months he was not sitting up. They did an MRI and diagnosed dis-genesis of the corpus callosum. I didn't know what it was, the corpus callousm connects the right and left brain. His wasn't connected correctly. He also has some rare genetic disorder but I can't remember the name, I could find out if you are interested. I never was a peds nurse. I always floated in our small hospital and floated to peds a lot. I think it would hurt me worse to not know why he is disabled! Did they do an MRI, did they do genetic testing for your son? He didn't walk until almost age 3, he babbles and maybe sometimes the sounds actually go with what or who he wants? He needs help feeding he mostly eats pretty well. He'll turn 4 in Nov. Of course his mother (my daughter) worries the most about his future. She is 39 her husband is 40, who will care for him when they die, will they find a group home for him to live in. So scary. I hope you have some support. I went to our local office of education for special needs children, they did have group meetings for parents to go to. In our area disabled kids enter the public school system at age 3. I would love to hear more from you. Your aches, feelings, saddness, worst scarey thoughts. I have thought and felt them all and won't judge.
  15. brownbook

    Previous paeds nurse and now Parent with special needs child

    I am (only) the grandparent of a special needs child. I am so sorry for your loss, loss of a bright beautiful happy child. Loss of a future for your child. After only about two years of intense emotional pain, things are getting better for me. I suffered with my heart ache alone. However I would think a parent would have access to parenting groups who are going through the same thing. Ask the therapists working with your son if they know of parent groups??? Or Google the disability your son has to find support groups. I would be glad to be a wailing wall for you if you want to just "talk" to someone who wont judge whatever your feelings are towards your son.
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