difficult child is now old enough for the psychiatric hospital...

Discussion in 'General Parenting' started by Autismkids, Jan 25, 2010.

  1. Autismkids

    Autismkids Member

    And I can't believe I've even been thinking about it! I may go down there and find out what out-patient help they have. Any time I think about how great a day of peace would be, I end up in tears thinking I wouldnt' be tucking him. My baby is still in diapers! :sad-very:

    I did just order 123 magic, and the explosive child.

    I'm taking new data on the cursing because I think he is replacing some of the tantrums with cursing. Of course I will not know until I have enough data.

    :whiteflag:
     
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    What do you think that will do to help him?

    Is he getting autism interventions? He needs them badly. And you need to understand Autism Spectrum Disorders (ASD) better to parent him appropriately. He can't be parented like a "typical" child. It won't work.

    Autism Spectrum Disorders (ASD) is a neurological difference, not a psychiatric problem. Have you read a lot about it? Who is helping your child right now? medications are not really the answer for autism. These kids don't understand what others understand intristically. They need a lot of extra help, usually getting it in school.
     
  3. Autismkids

    Autismkids Member

    I do understand autism for the most part. I have no interest in fixing or curing either of my kids. I'm just trying to help them survive and get by in this world.

    We use social stories, picture cards, schedules, when/first-then statements, address sensory needs as best as possible, battle picking, etc. I would never expect my son to talk to me during a meltdown, nor expect him to make through walmart without at least one incident. I know the difference between a meltdown and behavior tantrum, and how one can lead into the other. At this point I wouldn't know what to do with a typical kid! LOL.

    Last May, my son's behavior went from not-so-fun to deal with to extremely violent and constant tantrums (10-15 per day). During the summer I'd had enough. I couldn't figure out the trigger to save my life, so I couldn't fix what had happened. We've/he's never recovered from that and it'll be a year soon.

    He does not get ANY SERVICES RELATED TO AUTISM at school. Neither does my daughter. According to the school psychologist, he's not autistic. My son was diagnosis by a developmental pediatrician, and had "autistic tendencies" from a peds neuro when he was 2. His "official" diagnosis is Pervasive Developmental Disorder (PDD)-not otherwise specified. My daughter's is autistic spectrum disorder.

    My son is in a general ed kindy class and currently gets speech and Occupational Therapist (OT) 2x per week. He gets counseling 1x per week. I get parent training, but it's in school, so while the psychiatric has seen my data sheets, he also sees my son behaving fairly well. No one will admit that he's capable of holding it together and losing it at home. They (the school) said if he were losing as bad as I say, he'd be acting out in school.

    He was kicked out of his first daycare at 14 months, about 2 weeks after he started walking. He was tossed from another one by 2, and his last just before he turned 3. Once he started sped preschool at 2yrs9mo (half darn day!), no one saw the behaviors anymore.
     
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    You need to get a private neuropsychologist evaluation and fight for services. The school psychologist isn't qualified to say whether or not he is autistic.

    You are doing good on the home front, but Autism Spectrum Disorders (ASD) kids usually do not do well unless they have an aid in the general population of school. Worse, they often get considered "bad" when they are not. Don't let them talk you into thinking he is just a problem child. He has a very real disorder and the school needs to help him. And they have dropped the ball. That's where you and your advocacy come in...

    You are young, but don't let them bully you because of that. Call your state Dept. of Public Education (usually in state capital). Ask for the Special Needs advocate. Tell them your problem and ask for the FREE advocate in your district. The school tends to act a lot different when you walk into an IEP meeting with an advocate. Also, bring your private evaluations. They count too. And don't back up or give in.
     
  5. tictoc

    tictoc New Member

    Just want to second what Midwest Mom said...You need to fight the school district to get appropriate services for both kids. Does their school offer social skills therapy? If not, is it offered at a different school in the district? Both kids should be receiving some kind of social skills therapy and the school is generally the place to do this.
     
  6. Autismkids

    Autismkids Member

    Our district doesn't think any higher of a neuropsychologist than they do of a developmental pediatrician. And neither type of Dr's report will get a classification changed.

    My daughter was diagnosis by a neuropsychologist, and doesn't even have an IEP. She was evaled by the school, AND I had an advocate, but no go. She doesn't need help yet.

    DS was diagnosis by a developmental pediatrician. His classification is Multiple Disabilities, and under special alerts it lists each diagnosis separately. So Pervasive Developmental Disorder (PDD)-not otherwise specified is on his IEP, but autism is not his classification.
     
  7. Autismkids

    Autismkids Member

    Both kids are in social skills groups. Nothing carries over to the real world. So my daughter does amazing during practice phone calls, but has no idea how to really make a phone call. My son knows that what he does is not nice, but nothing sticks.
     
  8. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    If you school district discards all professional evaluations, and both a developmental pediatrician (who is an MD) and a neuropsychologist don't trump their stupid psychologist, you can STILL get services. And you need to. But you have to call your STATE Dept. of Public Education. They are OVER your school district. If they hear that your school is disregarding two evaluations by good outside professionals, they won't let that keep happening. That's discrimination. Autism is recognized as a disability and one psychologist at school can't stop that unless you let him.

    I had to call in Wisconsin and it set a fire under the Special Education Director like his pants were on fire. We had a school advocate (all school districts have them, but they don't tell you about them). We threatened to go to mediation, per the advocate. They don't want bad publicity for thier school. Plus the Dept. of Education can go into the school and investigate and see if they are doing all they can. They don't want that either. Also, the $$$ comes from the Dept. of Public Education in your state. They are a powerful ally if you use them.

    If I hadn't done this, my son would never have gotten services.

    You need to give your little ones time. Autism is a developmental disability, meaning they WILL be behind socially and may never be completely "typical" but almost all autistic kids who get the right help improve remarkably. I would not have thought my son would have any friends or be able to get his driver's license or make the honor roll while being mainstreamed, but he is. DON'T GIVE UP. Don't give that power to the school. Yes, it's tiresome to fight them, but the results are worth it.

    It sounds like they know you are unaware of how to fight them and they are intimidating you. DON'T LET THEM. This is your child/children and they need help. Your son, like mine, will become more compliant once he is less frustrated...in Autism Spectrum Disorders (ASD) kids that usually stems from severe frustration.

    The future is rosy for Autism Spectrum Disorders (ASD) kids, but they must get the right kind of help. I don't know where you live. I'm in Wisconsin. If you need to talk about it or ask questions PM me and I'll give you my phone number. You are the same age as my grown daughter and have a lot on your plate...I feel bad about that. You are trying so hard. I would try to help you anyway I can.
     
  9. Autismkids

    Autismkids Member

    I have a meeting tomorrow with the school about class modifications. I want to also address in-home help with him.

    What type of services exist that are not attached to the autistm label? I don't want to fight his classification just yet, and if I did it'll take time anyway.

    I would love ABA at home. I get parent training officially 1x per month at the school with the psychologist, but I don't think anyone can advise me properly until that person has been spit on and cursed at by my son.
     
  10. SRL

    SRL Active Member

    Admission to a psychiatric unit for a young child is almost always done for the purpose of stabilization through medications. You might want to inquire about partial programs, which are part time programs. Either way they would probably involve medications to stabilize moods. Some kids with Autism don't benefit from medications, while some do. Either way it's important to have non-medication treatments and strategies in place at home and school.

    If you have diagnosis's and written recommendations from professionals that are being ignored by the school district on the basis that a school psychologist doesn't think they're valid, then there are two options. First is to request an independent evaluation at district expense-ask more about this on the Special Education board. Second is to hire an educational advocate who is familiar with the district who can work with you to push the district to address your son's needs. Personally I favor the second because if the district isn't responding to two professionals already, they probably aren't going to listen to the advice of a third, plus you have no idea what the outcome of new evaluations might be and it could land you with even less than you have now.
     
  11. SRL

    SRL Active Member

    MidwestMom, I don't think as parents we can generalize what we as individuals have experienced with our children to other families. While it's true medications weren't the answer for your son with Autism, that doesn't mean that medications can't be beneficial for others with Autism. I know some families who have gone the distance and then some with therapies, interventions, and school services who felt that their children did much better with medications prescribed by a reputable professional. In some case medications might make the difference between the child being able to participate in therapy and school, such as with an extremely hyperactive child or one with serious, debilitating anxiety.

    I know it wasn't the answer for you, but I don't want other parents reading this to come away with the idea that this isn't a viable option for them. That being said I am HUGE on evaluation and non-medication based treatments first, but each child has different needs.

    I'm curious now as to what the percentage of kids and adults with Autism Spectrum Disorders (ASD)'s are that are on medications. I'm going to do some digging later.
     
  12. Autismkids

    Autismkids Member

    My son has been medicated in the past, but he reacted to it. At the time he had a life threatening allergy to dairy products. A very high percentage of dairy allergics can tolerate medical grade lactose (it isn't possible to separate the lactose from the proteins 100%), but my son had a reaction. That turned me off of medications for a few years. After I found out that the medication in liquid form was safe, we tried it again. He had an increase in his aggressive behaviors. So again, I gave up! He's medicated for his asthma, but that's it.

    I know there are no medications for his autism, but his aggression can be a bit insane at times, and that's what the medication aim was.

    After a brief phone call with an advocate this afternoon, I was informed DS's classification is way off. During tomorrow's meeting I have to have his classification changed to other health impaired.

    I'm also going to get more resources from the social worker about programs around here, and I'm calling the psychiatric hospital to see what they have.

    Hopefully tomorrow's meeting will move us forward.

    It's so hard to spend all afternoon fighting with him, but then give him a bath, (asthma) medications, and have my little boy in a diaper sitting with me for a story before bed. Beneath all the behavior, he's still my baby.
     
  13. Marguerite

    Marguerite Active Member

    What medications did you try for him? We've had mixed success with various medications and it's not just a familial thing. difficult child 1 was fine on medications that difficult child 3 can't tolerate. And vice versa. Strattera triggered violence in difficult child 3. Lack of medications triggered violence in difficult child 1. He also got bad rebound on ritalin, although he was OK when he first started on it. However years later we saw more and more rebound in him.

    ADHD medications have helped all three of our autistic/Aspie/Aspie-lite kids. But it only helps part of it. It really is mixed, some kids with autism can be at least partly helped with medications, but other kids can't be. We've been told different things, but one thing that seems to make sense - ADHD is considered to be part of the autism spectrum, up one end. It's possible for kids to have both and to at least (hopefully) treat that part. Also, kids with autism often get serious anxiety issues and they can be treated with medications in some cases (not difficult child 3). difficult child 1's Obsessive Compulsive Disorder (OCD) is being treated with antidepressants. difficult child 3 can't tolerate them.

    We do what we can. Can't do any better than that.

    Your kids are entitled to support and your two medical specialists should trump a mere school psychologist. I'm in agreement with the others - if the school is refusing help and ignoring your expert reports, then go over their heads. Keep going higher over heads until you get someone who will hear you. By rights, you should go over heads so often that they get athlete's scalp.

    There are a number of techniques you can use, but they boil down to "the squeaky wheel gets the most oil."

    Suggested techniques to get attention -

    1) The official letter. Often sent registered mail. An option (varies with area as to whether this is recognised) is to hand-deliver the letter but require its delivery to be receipted. Take two copies, get both signed by you and by person acknowledging receipt, you give one copy to the school and keep the other. Keep the official letter short and to the point and have it say something like, "I am putting you on notice on this date that I require an IEP for my child to deal with diagnosis X as made by Dr Y, letter attached. According to the law this requires your action by such-and-such date. I await your response."

    2) The "athlete's scalp" method. This is best when the matter is urgent. You begin to make phone calls over people's heads. You begin with the school and work upwards from there. You leave the message, "This must be implemented as a matter of urgency. Because this is urgent I will keep calling the next person up the chain until I get to speak to someone in person who is able to help me. The sooner you get back to me to help me, the sooner I will be able to stop making phone calls."

    3) The "dripping water wears away a stone" method. You turn up wherever you want to speak to someone you've been told is THE person to help. You have to have tried repeatedly before. You take a thermos, a blanket, your knitting, a good book. You make it clear that you will wait patiently until this person can make time for you. Nothing you have to do is more important than this.

    Whichever method you try, you need to be prepared to follow through. Foe example, if the response to a request for IEP comes back with, "We've already assessed your child and the school psychologist has deemed him/her to not need services," you have to not accept this but to find out what your rights of appeal are. The first point of action is to ask for the school psychologist's qualifications and publicly put them side by side with whoever diagnosed your child. Put this on the table in front of the principal (or the district education person responsible for disability support) and ask them to please explain how someone with less qualifications can over-rule your specialists. Take good notes. Then take those notes to someone MUCH higher up and ask them just how widely such attitudes are allowed to proliferate. Ask them if their child has ever had their tonsils out of their appendix out, and when their child was diagnosed, did they get a second opinion from the doctor's receptionist? Or their neighbour? Would they have let their neighbour perform the surgery? Or perhaps let the neighbour convince them that surgery to remove an inflamed appendix on the point of bursting wasn't necessary and to just tell the kid to stop making a fuss? Because what is happening here, is the same sort of thing.

    The final action to take, and again don't do this unless you're prepared for the consequences of people taking an interest - go to the media with what you have found. For example, the media would LOVE to go in with jackboots to ask, "Tell me, is it true that your school psychologist is able to ignore the diagnosis made by more qualified medical personnel?"
    YOu need to recognise that the media don't do this out of altruism, they just want a good story. But along the way, a good story can get your child (and other children who are also missing out because of the same attitude) the services they're entitled to.

    I suggest you go 'talk' to the mob over on Special Education forum, they can give you more specific support on what you can do in your area. You don't have to do anything you're not comfortable with, but choosing not to do something is also an action, and like all actions needs to be made in full knowledge of your rights and responsibilities.

    Go get 'em, Warrior Mum!

    Marg
     
  14. Autismkids

    Autismkids Member

    We had our meeting yesterday. It was informal meeting to make changes to DS's IEP. A simple meeting turned into a 95 minute debate. His teacher lied about some issues, tried to pull the "I have x amount of other kids" ****, and really likes to call people confused.

    We didn't get much accomplished. I have another meeting with psychiatric and Occupational Therapist (OT) tomorrow to go over the remaining issues. If I am not satisfied I will request prior written notice on everything refused.

    3 issues (out of 14) were covered and answered; The classroom management plan (traffic report sheets) will not be changed for DS because the teacher feels it's working. Bull, but whatever. DS will get help in afternoon packing, most likely my daughter will go down and do it. And his classification will be changed at his annual CSE. Sped director agreed that multiple disabilities is NOT the proper classification, but did say autism might work since DS does have a medical diagnosis and most of his services are autism related. Our other option is other health impaired. But, if DS continues to be in general ed, I want the autism classification. If he is in an integrated or self contained next year, I'll agree to OHI.

    One of the biggest issues not covered was modifying the handwriting program BACK TO THE WAY IT WAS DESIGNED! I;m not asking the teacher to create a program just for DS. The school uses a great program, but they're not using it right! It would fix some of the issues she has with DS's writing.
     
  15. SRL

    SRL Active Member

    You also might want to look into Handwriting Without Tears, if you haven't already.
     
  16. Autismkids

    Autismkids Member

    I've been using HWT with my daughter since kindy. Just this past year, the kids' school started using HWT and thought it would be great!

    They're using the book and language, but following the letter order from the reading program. They're also teaching upper and lowercase at the same time.

    They spent all this money for a great program, only to use it wrong and with untrained teachers.
     
  17. Marguerite

    Marguerite Active Member

    Call another meeting ASAP to follow through with completing the agenda. Also add in to the IEP (if it's not there already) regular emails between you and the teacher, preferably daily (or almost daily) simply exchanging information. You need to keep the teacher alerted to any early warning signs (if he didn't sleep well, for example; or if you have a difficult morning with him) and she needs to feed back of ANY issues as well as any positive stuff. Then copy these emails into one long text file. She needs to do the same. Read over this regularly. You will be amazed at what such a system can tell you. And the teacher. Together you can find out some useful things which then go to help inform the therapist and psychiatrist.

    Ride her close. If she says it's working, then when it clearly isn't, call another meeting. Keep calling meetings until the problems are ironed out.

    You have a right to do this.

    Marg
     
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