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Moms who have children with disabilities or children with diseases

I have two small children who have a rare genetic disease called cystic fibrosis...and it has got me thinking about other moms who might have children with diseases or disabilities. My kids are not in school yet and it makes me wonder what it will be like for them to go to school and having to cope with their diesase while around other kids. Is there anyone who is going through this now and how do you cope? How do your kids cope? What kinds of things are they going through everyday? I think its kinda sad that you dont hear more about issues like these on TV...especially considering all the trash that is on TV...you would think that someone would take the time to address this kind of stuff!

Answer Question
 
sm_fuller

Asked by sm_fuller at 9:49 PM on Mar. 29, 2010 in Kids' Health

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Answers (12)
  • My child went to public school for three years and got teased and harassed. The other special needs kids did too. By teachers and children. I homeschool her now and it is wonderful!
    Anonymous

    Answer by Anonymous at 9:52 PM on Mar. 29, 2010

  • My kids have a much rarer disease, common variable immune deficiency (CVID). We homeschooled. They are now adults. My grandson is 18 months and also has CVID. I think homeschooling is only the way to go.
    Gailll

    Answer by Gailll at 9:54 PM on Mar. 29, 2010

  • Gaill- What exactly is CVID and what issues did your child face?
    sm_fuller

    Answer by sm_fuller at 9:58 PM on Mar. 29, 2010

  • honestly it depends on the school. i was an aide for special needs classes in elementary school and also high school. some schools have the special needs classes totally seperated and other schools it's more integrated into the regular student population. i must say though that even at recess (in elementary school) the other kids never treated the special needs kids differently.... but like i said it depends on the school and i guess the students too. in the high school the special needs classes were totally seperated all the time except for the kids with down syndrome and they had a 1 on 1 aide who went with them to their classes. i never had any trouble with that either though. gl..... i hope it goes great and it can be a good experience
    princessbeth79

    Answer by princessbeth79 at 9:58 PM on Mar. 29, 2010

  • I have a friend who has CF and she did colorguard with me. Hers wasn't too terribly bad but I know she has been in and out of the hospital recently and had to have a PICC line put in. But overall she is doing very well and she took really good care of herself. To most ppl she just said it was asthma b/c it was easier. She also has a son now and is doing really well.
    chelleybeans

    Answer by chelleybeans at 10:52 PM on Mar. 29, 2010

  • Well, this is what I do for a living. I teach children with severe special needs in a middle school. I think or school is wonderful and we have awesome character (in fact, our school is a National School of Character award winner.) Our kids in our class get put in other classes with grade level learning peers as much as possible. Usually no less than about 3 out of the 7 periods. If your children have cystic fibrosis and no learning disabilities, then I think they will be fine. The kids I work with have Tramatic head injury, autism, down syndrome among other things. Our kids are well loved and well liked by the other students in the school. It all depends on the school and how much interaction the rest of the school has. I think the more, the better!
    vickwu

    Answer by vickwu at 10:03 PM on Mar. 30, 2010

  • School experiences will vary with the child & the school. Two children with the same diagnosis in the same building can have very different experiences depending on the severity of the child's disability, how the parents handle the child's disability & whether or not they have a good working relationship with the school administration and what type of personality the child itself has. The best way to be prepared for the future is to raise a child who is knowledgeable about his or her disability and is also confident in his or her abilities. The parents should also learn as much as possible about special education law in their state and develop a good working relationship with the school district. Be realistic in your expectations, don't become adversarial no matter how much you want to shake some sense into staff and realize that, no matter how much you want to, you can't protect your child from everything.
    Anonymous

    Answer by Anonymous at 11:56 PM on Mar. 30, 2010

  • My son was tested for CF 2 times because they were so convinced that he had it but both times the sweat test came back negative so they tested me and saw that I was not a carrier which made it impossible for him to have CF. But he has other respitory complications and I was told when he was 16 months that he would most likely need a lung transplant later on it life so I totally understand what you are going through. Jaydin gets sick every 4 to 6 weeks and is on breathing treatments daily (even on good days) and goes on anti-biotics and steriods and almost constant breathing treatments when he is sick. How do I deal? I have no other option!! I have accepted that God gave me a sick child and I am bound and determined to treat him just as I would treat any other child. He plays sports, even though he cant make it through an entire game without having to come off the field in a coughing spell. continued...
    Jaydin_Makenna

    Answer by Jaydin_Makenna at 11:18 AM on Mar. 31, 2010

  • He goes to normal school, even though I am constantly needing to run up there and give him breathing treatments because the inhaler doesnt always work for him. I dont want him to be treated any differently or to not live a fun filled life just because he isnt healthy. Its very hard to watch him have to go through everything that he has gone thru but it helps me to know that he is living the same life that he would if he were healthy. Sure, he cant keep up at the same physical pace as everyone else can but that doesnt matter. He is happy and I dont want to have any regrets about not giving him the type of life that he deserves. He has a weakened immune system and asperates his own flood so he makes himself sick without even being around a sick person. I know that I am probably coming off too strong right now but this is something I feel very strongly about and I refuse to change my son life just because he is sick
    Jaydin_Makenna

    Answer by Jaydin_Makenna at 11:22 AM on Mar. 31, 2010

  • My son is in the second grade. He has West Syndrome, so through most of his school career, (until his last two brain surgeries in january), he was having 200+ small seizures a day. He was fully dependent on diapers, mostly non-verbal, and the cognitave age of about 2... He goes to public school, and is in a self-contained classroom. Our experience, (since fighting to get him into this program, after much research), has been WONDERFUL!! He has a full time nurse and aids, he gets lots of therapy, and has only 7 other children in his class who all have disabilities. They also expose him to "typical" peers as much as possible. Two girls in the 3rd grade ADORE him and read to him twice a week! (he LOVES their attention! lol), he goes to music and PE with the general ed 1st graders, (with an aid). His class goes on field trips, and is now helping with potty training since his seizures are gone for now! ...
    Elyssa414

    Answer by Elyssa414 at 12:46 AM on Apr. 3, 2010

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