Hey there! I'm sorry you are feeling so stressed! I
know how hard it can be!! Have you tried calming
techniques such as brushing or massage? She may be having
sensory issues that are setting her off. She probably can
not tell what is bothering her or agitates her. When we
tried the Wilbarger brushing technique on Jacob he would just melt and
relax. He could then behave and sit in school and also
focus on his teacher. You need a good PT experienced with
sensory integration to show you how and moniter its implimentation.
It takes commitment to follow through with it
but it did help and with no drugs.
Sometimes there are also things in their diet that can set them
off. I haven't had a lot of luck with changing diets
but some others have.
I have found it important to surround myself with positive
people. If someone gives a bad prognosis to my
kid, I don't think that person is very committed to trying to
improve things. I almost take what they say as a
challenge and try to prove them wrong and I find someone else who is
more positive who is willing to take the time to try to find out what
will help! I hope you can find some good help
! Hang in there!!
We have seen great improvements in our boys over the
years!! bonnie
i dont know what to do anymore. i got my daughter evaulated last year. she has pdd-nos with mental retardation. she is SO aggressive. i have her on meds now. but she still is incontrolable.she is 4 years old. her meds are risperdal and capres. is it always going to be like this. will it get any better.some people tell me that she will depend on me for the rest of her life. is that true. and if it is i wont leave her side. i just cant do this by myself anymore is their anything else i can do for her that i'm not doing already .
Its hard to say. The future is so unknown. Is she verbal? Generally kids that are diagnosed with pdd-nos can learn to live independently. What kind of therapies is she recieving right now? As far as people telling you that she will depend on you for the rest of your life, who told you this? With intensive and repetitive therapy some kids on the spectrum can learn to live independently. As far as it getting better, some kids do. But the behaviour issues can be worse in the teenage years because of the hormones changing in the body, and in my case with my 13 year old, autism kicking in.
Tammy
[QUOTE=essence7]i dont know what to do anymore. i got my daughter evaulated last year. she has pdd-nos with mental retardation. she is SO aggressive. i have her on meds now. but she still is incontrolable.she is 4 years old. her meds are risperdal and capres. is it always going to be like this. will it get any better.some people tell me that she will depend on me for the rest of her life. is that true. and if it is i wont leave her side. i just cant do this by myself anymore is their anything else i can do for her that i'm not doing already .[/QUOTE]
I've heard risperdal can make kids more agressive instead of helping. Maybe you need a second oppionion? My son is agressive but usually with distraction he can be turned in another direction. It might take a little while, but he usually gets there by the end of the day. Today his obsession has been stomping on his sister every time she sits or lays down in the floor. I've had to seprate them and it's been a struggle today but he finnaly stoped doing it around dinner time. I also resort back to his favorites at trying times such as his video games or a fav. movie.
Good luck and hang in there I know how you feel about the can't do it by myself thing. I've been looking for help all over for myself and also for a service pet for Zach. I am also at my wit's end trying to keep up with him and his sisters. Hopefully he sleeps well this week we have swimming lessons starting tomorrow parent and tot class. They are at 7:30 to 8:00 at night. I just know he's going to love it the problem will actually be getting him out of the water!!! But I'm going to take his stroller with us and strap him in it after we get out and into the locker rooms. By the time we shower, get dressed (I'm putting him stright in jammies) and the 20 minute drive home he should be out like a light! I've got my fingers crossed.
Hi, I'm new here but I read your post and I just had to reply. My son was diagnosed with pddnos when he was 20 months old. At the time the dr told me that although he was not mentally retarded right now that he WOULD be in time. She also said that I would probably end up putting him into an institution for the mentally impaired. I have to tell you that after my husband and I went out to our car, while my husband kept saying she's wrong, I screamed and cried. Then I went home and got to work. I researched and researched. At the time my son was getting speech and ot and neither was having any effect on him at all. So, I bought a book called Let Me Hear Your Voice by Catherine Maurice. After reading this book and crying the whole way through, I called up early intervention and told them I wanted my son to have ABA therapy. To make a very long story short, my son is now 4 1/2 years old. He has so many words that you can't count (although some are still hard to understand). He is a very loving happy boy who smiles and laughs all the time. When we took him back to see that dr who diagnosed him she said she must have made a "mistake". That he must just be developmentally delayed. I know he is still autistic but I also know that he will never end up in an institution. So my point is to never give up and to do your research. If you've tried ABA and it didn't work try something else. No one thing is right for all our children.thanks tzoya, once again you answered my question. I am horrified about the social skills training information-thanks for the heads up!My son takes risperdal. He started back when he was small.. he's 12 now. For a while it would only work if we increased the dosage.. he was up to 2.0 mg a day.. we took him off.. tried some other meds.. now are back on with .25 once a day and he is doing fine.
meds are a trial and error process, you have to do what works for you and your child. So many people say that prozac and zoloft worked for their kids.. for mine he was off the wall.. Paxil is a dream med for some folks.. my kid became so apathetic it was scary.. slammed a kids head into a wall and was like.. EH..
we now take adderall xl risperdal and wellbutrin.. this combo is working well for us...
Dee
Whatever works I guess is what you have to do. I just never did or desired to put my Mark on meds--no matter what his outbursts were--he just had to learn to deal with life, and it took him a while.
And I didn't put up with any out-of-control outbursts. He knew the score and was careful not to push me too far. I think all kids are mostly that way. They'll push you are far as you'll let them.
I'm not playing devils advocate I would just like some current info. In the book High Functioning Autism and Aspergers's Syndrome( by I dont know who and I'm not really sure that is the correct name because I lost the book.) but they give a much more dismal picture of the future of kids on the spectrum. I think it was like 2% are able to achieve normal functioning. The book was pretty recent as one of the doctors who wrote is was from the MIND institute.
Just wondering what you guys had heard. I would love a more optimistic number.
I hear your frustration regarding feeling like you are doing this all by yourself! That in itself is overwhelming and there are services out there to relieve you, if that is what you need, respite care. I, too would seek a second opinion and when you do ask the physician for a social service consult or refer you to services for children with special needs. Your child needs you to be strong, but if you are burnt out and hopeless that is no help to your child. Plug yourself and your child in to all and any services you are eligible for and find what works best for you both. I would look into the sensory issues and watch the diet. There may be things in the environment that are causing problems. Keep looking, ask for what your child is entitled to, those services are in place for a reason. Good luck and hang in there, it can get better and children with autism can function in this society, they just need to be taught how and we need to be sensitive to how they interpret the world we live in....I would like to thank you all for all the emails.It's nice to know you all care to help out thank.I have to say I don't understand a lot about pdd.But I do know I only have one kid thats Steph age9 .She has epilepsy (grandma) seizures and PDD and I don't care.I still love her so much I am going to try my best to do whatever I need to do to help her.It's just so hard when I can't get her to understand something.Or when I can't understand why she is acking like she is 4y's old.Sometime's I know she gets mad when I can't understand what she is talking about at times.So I do know its not just hard on the parents.Its also hard for the kids with PDD.Thank you allI am impressed that you are a very special and loving parent.
[QUOTE=essence7]i dont know what to do anymore. i got my daughter evaulated last year. she has pdd-nos with mental retardation. she is SO aggressive. i have her on meds now. but she still is incontrolable.she is 4 years old. her meds are risperdal and capres. is it always going to be like this. will it get any better.some people tell me that she will depend on me for the rest of her life. is that true. and if it is i wont leave her side. i just cant do this by myself anymore is their anything else i can do for her that i'm not doing already .[/QUOTE]
Don't worry about "the rest of her life". Just worry about today because the only thing certain about the future is NOTHING is certain especially with dealing with any type of disorder. I am very knowledgeable with MR issues and ran group homes and case managed adults with MR living on their own. Don't sell them short, you'll be amazed at the things your daughter will do in the future. As far as autism, I am flying by the seat of my pants and learning day by day but my son is much different than he was a year ago and I can only assume he will be so much more in a year from now. I believe in him more than I do a diagnosis, kwim? With the aggression, is their a certain trigger you can see? Is it behavioral like not getting her way or does it just come out of the blue? I had an adult MR individual who would attack a woman (always a woman) from behind immediately after a seizure. I also heard that some food allergies like corn can set kids off with or without autism. I am actually a little nervous about the aggressive tendencies that I hear people talk about but for now I'm counting my blessings.
[QUOTE=chattymother]I need some help!!! My daughter is 9y's old she has pdd and epilepsy seizure.For 3 weeks she been going to sleep at 1:00am or 3:00am.I can't get her a sleep before that because she is worry about the doors being locked and the window's being locked.She will make us keep checking the doors and window's and if we say no after 2 times.Then she will keep getting up to check all doors and window's.I would like to know if this got to do with the pdd ??? I CALLED her physician but can't get intill next week.Can someone help me please?? She was like this at age 4.but got on machines and got better it all stoped..I need some help befor next week...please help me out someone!!!!! Thank you Christy
That's OCD behavior. Not sure if that's related to autism but that is definitely OCD. There are quite a few meds from antidepressants to Buspar that can help that. What machines was your daughter on?
[QUOTE=pinkquinn]I'm not playing devils advocate I would just like some current info. In the book High Functioning Autism and Aspergers's Syndrome( by I dont know who and I'm not really sure that is the correct name because I lost the book.) but they give a much more dismal picture of the future of kids on the spectrum. I think it was like 2% are able to achieve normal functioning. The book was pretty recent as one of the doctors who wrote is was from the MIND institute.
Just wondering what you guys had heard. I would love a more optimistic number.
[/QUOTE]
What's normal functioning? LOL
Normal is relative although none of my relatives seem normal. LOL
Regarding the future of the kids on the spectrum and the MIND Institute saying only 2% will be able to achieve normal functioning--so what if they don't achieve normal functioning?
As I age, I am no longer able to achieve normal functioning. But my mind is still good (even better than it used to be), and my typing skills are still okay, and with my son Mark's help I am able to achieve all kinds of wonderous things I never even thought I could do before. Did you catch that? (With Mark's help!)
If Jesus comes within our lifetime (and I think he will), then I believe he will heal the autistic children and others with debilitations--as all things are possible with God. Remember, the "tree of life" and the "tree with the leaves that will heal"? The Bible says, "Keep watching and waiting for him," and "give him no rest until he comes."
He will also take care of the "evil ones" in a very appropriate way.
So, if any of you are offended by my referral to Bible prophecy, then for you I'm sorry.
hmmmm, to clarify I ment what are the new stats on how many kids on the spectrum live indepedently (i know even people like you and I need help sometimes)
I currently am interested in having other kids to look after dd and growing roots in my community and creating assets that can be used by dd when dh and i are gone.
I'm not talking about brainy people who have trouble remembering to dot their i's and cross their t's. I'm talking about kids who NEED support to survive.
dd is high functioning and mildly affected, I am wondering what new info is availalble on kids who have had early intensive intervention. I would imagine that since the therapies have gotten so much better that the prognosis would have changed.
Around here I know of group homes for high functioning Asperger's men. One of those men has a degree from Princeton. Their social skills are so horrible, they CANNOT hold a job, no matter HOW brainy they are. I know the mother of the man with the degree (he's now 35 and was diagnosed as an adult). She never ceases to remind us that getting our kids appropriate social skills as well as on the job skills is, by far, the MOST important thing. Those of us whose children are still on the young side have to take this advice VERY seriously. To complicate matters, recent studies (I don't have them, but I've been told about them) on the affects of formal social skills training on ASD kids show that those groups have NO affect. The only way to instill social skills is to individually teach our kids ourselves. This will take a lifetime. But we MUST try.Second, RIsperdal IS for aggression. It helps over 80% of the ASD kids it is given to. Abilify is very similar. However, some ASD kids have odd reactions to medication, so you MUST get your daughter medicated through a physician who has a great deal of experience medicating autistic kids.
Third, CONCENTRATE on educating your child. Getting her as much help as the school can give her. To know her legal rights, start looking at www.wrightslaw.com If you need more help, get the help of a special education advocate (each state MUST provide some free advocacy help, but you might need to get additional help.
Chatty, have you tried melatonin? My son would stay up until 2 or 3 in the morning if i let him...but since giving him melatonin, he's been sleeping 30 min after giving it to him.First off, I agree with Tzoya. NOBODY is institutionalized anymore. This doctor is thinking like back fifty years and I'd dump him fast.What is capres? Ok, the other questions. She may need care as an adult, but it can be minimal. All depends. And certainly NOT in an institution! The care doesn't have to come entirely from you though. Many kids live in their own structured apartments or group homes. Out here we have a great group home, where the adults have tons to do, and we have a sheltered workshop. The adults visit home as often as they like. Since none of us can live forever, it's always smart to have a plan for adulthood. In our case, I'm lucky enough to have a grown son who is very attached to Lucas, and will watch him and make sure he has a good life. Just because an adult may need supervision doesn't mean the adult is miserable. Remember, our kids are not NT and what makes us happy isn't the same as for them. Their idea of a good life is very different. Most kids my son's age (he is 13) think it's the living end to hang out at the mall. My son is bored to death at malls. Most dream of getting driver's licenses. Mine so far says he never wants to drive. (I'll probably force it at 18 because I think he's very capable of driving well). He also doesn't seem to have that drive for independence, and likes being around us. That's ok. He doesn't need to be NT. He just needs to be happy. He had terrible behaviors as a toddler and now he is the sweetest most placid kid on earth and med-free. There is hope.