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  • Update on Angel

    Angel is doing great!!! She hasn't had a flare up for about a month now. We have been trying different foods to see what she can handle. She is now able to eat bannanas and apples with no problem. But, a few months ago.... well.... they caused a whole lot of pain. She even had spaghetti a couple nights ago (with some Prelief) at Olive Garden. It didn't cause any real bad pain... she said just a little. But, she said that she just wants to have stuff like that once in a while because she "misses that stuff".
    Her school has been doing some testing on her to help find out how to better teach her. They also did a psychological evaluation. Well, I already know about Angel's psychological problems. Duh. That's why she's been seeing a child psychologist for about two years! But, they also are saying that she has AD/HD. So what? I have AD/HD too. I have learned to work with it - not against it. And, that's how I help Angel. We work with it - not against it. She does great here at home with me. Yes, she is very active - but, aren't most kids? She will be 6 next month. And, she acts like almost every other 6 year old I have ever met! At least in the "hyper" way. I just hope that with them knowing that she has AD/HD, they will help her by working with her instead of against her. She has enough problems.
    I know a lot of schools are learning more and more about how to deal with AD/HD. But, some of the teachers aren't. Angel's teacher seems to be "stuck in her ways". She expects Angel to be "normal". That makes me soooo mad!
    The only part that isn't going so well is that she has been having "breakdowns" in school. But, not in her "special" classes - only with her regular teacher.
    One day, Angel was getting ready to leave. She was getting her coat on and some kid (I was told by Angel) blew on her neck. Her teacher said that the kid was just trying to bend over to put his boots on and "accidentaly breathed on her". Then, Angel said that the kid bumped into her real hard. The teacher said that he accidentaly bumped in to her. K... so I believe the kids was just trying to get ready and really did bump into her. Not saying her teacher was wrong at all about that. Angel started to cry when the kid "blew" on her neck and when he bumped into her she really started to cry - and scream. She screamed so loud that she hurt a little girl's ear - the girl wears a hearing aid. Ouch. Anyway, instead of trying to calm Angel down, Angel's teacher told her to go put her head down on the table for being bad. Now that made me mad! She wasn't trying to be bad! She needs help - not punishment. She didn't scream to hurt that little girl's ears on purpose! When Angel finally came out to my car she started crying again. She said, "nobody likes me. They think I am a brat. Every body hates me." I wanted to cry! But, she didn't tell me what had happened. So, I called her teacher and told her what Angel had said. Her teacher told me - in her words - what had happened. Then I asked Angel why she though the kids don't like her and that's when she finally told me what happened. Then I called the teacher back and asked her how she dealt with Angel. I was so mad! I explained to her - again - that Angel was not being bad and shouldn't have been punished. Her teacher has already been told about Angel's problems. Her teacher had even went as far as to manually force Angel to put her head down on the table. What a bunch of bull! She told me that "Angel wouldn't listen". I told her how Angel should have been dealt with. She said that we would have to talk to the school nurse about it. cussing Wait a minute! Last I checked, I was Angel's mother... Angel's only parent. I know my daughter.
    Well... hopefully they will listen a little more now that they have done all this psychological testing. And, they need to keep in mind that she does have problems. I mean come on. She's been through sooo much and having IC was just the topper! She has been kidnapped, molested and neglected by daycares and babysitters. A babysitter - the one who molested her - also smoked pot around here. She has dealt with seeing me severely beaten. She has dealt with seeing two cats die. She has dealt with IC. She has dealt with hearing people telling me that I was a bad mom because she was still in pull-ups at the age of 5. (Then people wonder why I don't trust anyone with my girls!!!) Angel has been through much more in her short little life. More than a child her age should have gone throug. Of course she has problems. Then it doesn't help that depression runs in my family!
    Gee.... I wish I had a magic wand that I could wave over her and take all the pain away.
    Anyway.... another novel by Heather...lol. Hey, it's been a while. And, I remember some one said that she like reading these...lol. kissing But, like I have said before.... this helps me. And, I can't keep it short. Lol... I have tried. It's just not me.

    Heather
    The things kids say!

  • #2
    Heather,
    That's so great that Angel ate spaghetti!

    About the pull-up thing, a couple of nurses were talking to me one time and said they've seen alot of sexually abused children that still wore pull-ups or still had accidents even at age 9.
    (Age 9, just wetting the bed.)
    It is no one's business. Only your pediatrician can really try to help her and give you advice on this. But I also know of a mother with three boys. She home schools them. She said she's really intent on keeping them sheltered from the world. And she wants to keep the youngest one a baby forever. (Since he is the last child.) This young fella is 4 1/2 years old and still in diapers. It's sad more for him cause he now knows something isn't right. He gets embarrassed when she changes his diaper. I want to shake her and say wake up!
    Your daughter has a legit reason for her bathroom problems. Gosh, even without the abuse she still might have had potty problems with Ic at such a young age.
    Take care of you and them....btw, how's the new relationship going?
    Hugs! grouphug
    Tons of support,
    Jaime

    IC angel helping families in need for the holidays. [email protected]

    Comment


    • #3
      Oh how sad about the school someone needs to shake the teacher and say hey you wake up! cussing it makes me so mad they think everyone is to be normal and have a normal life everyone wants that and every child wants a normal life but that isnt the way the cards are delt to us and we have to deal with them the best we can Heather you are doing your best with her and i believe you are a good mother I would keep on the school's butt until they done something about that teacher that teacher has no right to force a childs head down. she knows angel has adhd (sp?) she knows she has ic and i'm sure you have already told her about the other stuff she has been threw she should be helping her not against her and to me that is the way it seems.
      I'm so glad she is getting to be able to eat some of her old foods she loved so much i hope she continues to get well.
      xxxxxxxoooooooooo
      Rhonda
      Medicine taken daily or as needed:
      1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
      2. MS.Cotin 100mg 3x daily
      3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
      4. Fentanyl 100 mg Change every 48hrs.
      5. Gentamicin 80mg install after each rescue treatment
      5 Leviquin 500mg self start as needed.
      6. Klonopin 1 or 2 daily as needed.
      7. Prosed/DS as 1 every 6hrs as needed.





      I have IC, but IC doesn't have me anymore!

      Comment


      • #4
        Heather,
        Although my son is now 27 he has had ic since 21. A doctor thought that Adderall ( a prescription for ADD) would be helpful for him. Just a word of precaution....it sent him into a horrible flare...it created acid in his urine which made his ic worse. Good luck with your daughter.
        brenda

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        • #5
          Heather, one of my kids (now an adult) is high functioning autistic and we saw variations over the years of different behaviors exhibited at school than at home. His behavior at home was not an issue since my husband and I had been trained with how to work with him. Sadly, this was not the case at school sometimes.

          Frequently, depending on the what teacher he was assigned to that school year (and also their understanding of disability and behavior combined with their management style), I would get a call saying my child was __________ (fill in the blank: defiant, bad, rude, etc.) When we asked for more information about the particular incident, we would focus particularly around what took place just before the undesired behavior occured. We discovered that familiar scenario(s) would emerge.

          We learned that he would act out under certain conditions- which is familiar with others with his disability. For instance, one year he had a teacher we could recognize as "a strict authoritarian" and she didn't understand much about either autism or behavior. One day, my son threw a plastic fork in the trash. The teacher, who was recycling plastic, told him to dig the fork out of the trash. My son refused (he also has an OCD dx with germ phobia) , telling her the trash was "dirty." The teacher was very upset that he was "defiant" and escalated the situation considerably. In fact, she eventually restrained him- which was an inappropriate method of behavior control given the facts.

          Where am I going with my story? Basically, you will encounter many educational professionls who are helpful and understand students with unique needs such as Angel. And, you will come across teachers who do not have the training and understanding necessary to successfully teach Angel and enhance her self esteem in the process. The key is knowing the difference and then acting on that knowledge.

          I am disturbed that you say the teacher manually forced her head down on the desk. This is an unacceptable method of behavior management, I would certainly express this- in writing- to the principal with a cc: to the teacher. Perhaps you may want to consider whether Angel should be in this teacher's class.

          It sounds like Angel is being assessed for eligibility under the Individuals with Disability Education Act (IDEA). There is an important part of IDEA that deals with behavior and discipline that requires schools to use POSITIVE behavioral interventions (in certain circumstances) rather than negative, punitive, exclusionary or possibly abusive ones.

          There are many websites to help parents in this area, I would be happy to send you more links if you send me a private message. A good website is at www.wrightslaw.com

          My daughter also had bladder issues when she was at school. There were times she would come home in tears because Teacher X would not let her go to the bathroom, so she wet her pant and the other students laughed at her. This was an incredibly painful moment because Teacher X had been inserviced by the school nurse and had been given a doctor's note before this incident. His defense when I arranged a "meeting" with his supervisor, was to claim that my child "was simply petending the need to use the restroom to get out of class."

          Let's just say there was never a repeat of this issue at this school again.

          Hang in there for Angel. You are a good mom who obviously loves her daughter and is trying to help her. Hugs, Carla

          Comment


          • #6
            Hi, I am just reading through. I got to say your story really touched me, I started to cry because i can feel what you are going through. My son is now seven, and he has ADHD, so i know how hard that is. He has been in therpy for two years now, he was molisted at a day care center also at the age of three, he saw me brutilly raped and was trying and trying to pull the guy off of me while crying his eyes out and yelling. He was then again molisted at the age of four. Now feeling like a horible mother who can never protect her son no matter what i try. Then at the age of five I end up in the hospital for the weekend, and My roomate took care of him, since I am a single mother and his father is not around. A family member called social services on me because I left my son with my roomate, and tried to get him taken away. He was tramatized about this strang guy coming into our house, and everything we went through with the state. Best part is, the state was for me and not against me. I explaned my medical condition to them, and to make a long story short, he wrote a letter on my behalf after speaking to my son saying what a good mother i am.

            Your daughters teacher needs a new attitude adjustment. I would try to change classes, no teacher should treat a child like that, I would write a letter of complaint. Is your daughter on any meds for the ADHD? I was totally against it, and my son is the one who asked the psychologist if he could give him something to help him sit in his seat and be able to concentrate in class. So we put him on stratera, which is not a ridelan. It has helped him a lot in school and he does not use the meds when he is on vacation. I am also lucky that i have great teachers they all have worked with my son and give him extra attention, which is a blessing and he loves going to school for that reason.

            Also how old was your daughter when she was diagnosed with IC? What were her symptoms, and what treatments did they do for her? I have IC and know what I went through, but now I am concerned for my son. The last few months he has been complaning of abdominal pain, so yesterday I took him to the dr.s and they found nothing, so I instited on doing a UA dip and they did and he had large amounts of blood in the urine, for me that is how I started. I am now awaithing the rest of the lab work results they ran on him. I just hope he does not have it. He already got my ADHD, and my asthama the last thing I want him to have is IC.

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