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Name: LettyVLO | Date: Oct 20th, 2007 5:42 PM
I can totally relate to everyone when our kids get these episodes where good one week and just "hard to deal with" the next. I am physically & emotionally drained.
I am currently on the waiting list for a weekend respite. They are finding a hard time finding a place for Stephen. Because of all his behaviors they just can't seem to find one. But can you do?
Thank you all for sharing. 

Name: JAN | Date: Oct 22nd, 2007 3:18 AM
Dear All,

I don't even want to read what I wrote last time. Things have changed so much for the better. I'm almost afraid to say that and jinx things. There is so much to tell. I know last time I was on the site, I was pretty desperate. Andrew was in two different group homes and was hospitalized about six times from the spring of 2006 to that fall. Had I done my homework on the internet I would have been able to predict the huge meltdown that occured. Most group homes and sheltered workshops aren't geared towards people with autism. Even if a person has mental disabilities, the autism must be addressed first. Andrew started seeing an autism specialist, psychologist, in the fall of 2006. Dr. Wahlberg talked about people with autism not being able to feel the cues that the anxiety is building and turning to anger and then out of control. Andrew was always ok or out of control. He started talking to Andrew about these things and what to do to relax. I thought it all made sense but didn't think for a minute that Andrew would be able to grasp this concept and use it. Now I've seen him do it. Of course it's more complicated, but that really is the basis. Dr. Wahlberg isn't opposed to medication, but thinks maybe a lot of what is being diagnosed as bipolar disorder in people with autism is really their autism. All I know is Andrew had seen a really reputable psychiatrist for 10+ years and he consistently told me any type of counseling or therapy would not help Andrew. I'm finding that many psychiatrists are out of the loop regarding autism. Because Andrew is fairly high functioning, I never suspected he needed so much structure in his life. I guess the deal is that all the variabilities in life produce stress and anxiety, The person with autism doesn't recognize the signs and then all of a sudden they are out of control. When I'm going to be spending time with Andrew now, I always tell him what I think we'll be doing and ask if it's ok with him. I might say something like, this morning I thought we would just hang out at home and relax and then go to the grocery store this afternoon and then have some family over for dinner. Sounds simple, I know. One night when Andrew was home for dinner and so was my daughter and her fiance, Andrew stood up from the table and asked if I minded if he ate down in the family room. I knew he was signaling that he had enough togetherness and now I also knew enough to say, go ahead. Before I would have said, what do you mean eat downstairs, why don't you stay here with us, we're all having a good time. Ofcourse, before Andrew never would have asked to eat downstairs, he would have just stomped off and shouted something nasty.
I know I'm making it sound so simple. It's more complicated, but not anything that anyone couldn't learn. I've tried to be careful not to talk too much about the theory of all this because ofcourse I'm not qualified. Dr. Wahlberg has been wonderful. His dream is to start a farm for adults with autism. There are a few in the United States and more in Europe. If you aren't familiar, google in Bittersweet Farms, Ohio.

We are all hearing about autism everywhere now. Most of the talk is about early interventions, screening, etc. We all know that is important, but I am anxious for the time when people realize what is going on in our homes and how we need help now.

I just sat down and typed - rambled. There is so much more, but not tonight. I want everyone to know that there is hope for your adult children with autism. Things are still a struggle, but so much better than they were. A few weeks ago I rented a beach house on Lake Michigan ( I worked many extra shifts!) and for the first time in many, many years I was able to take Andrew and my two other kids and my grandchildren. We had a wonderful time and there wasn't one incident. I am so grateful.


Name: momathome | Date: Oct 27th, 2007 7:02 PM
Thanks Jan for the info. It helped me in choosing a place for Steven. It is a facility that deals just with autism. They will be much better to understand him and help him cope. The first places I visited didn't have any autistic people and I really felt uneasy. I'll keep updating our progress so it might help someone else. 

Name: LettyVLO | Date: Oct 31st, 2007 1:11 AM
Please keep us inform on your son Steven. My son is named Stephen too! Like I wrote I am on the waiting list for weekend respite. I will probably be on it for awhile.
We are having abit of a problem with school. He might be transferring him to a non public school for severe behaviors. He has been real aggressive. Seems that this Sept. they put in two students who are in wheelchairs and very fragile. The teacher is conerned that Stephen might hurt one of them. But then why did they put these two students in there?? Do they want to push Stephen out slowly?? So stressful. 

Name: JAN | Date: Nov 3rd, 2007 3:47 PM
Hi Momat home and Letty and anyone else,

How are things going with Steven and Stephen? Please let me know.

Some thoughts I have about our children with autism and aggression is that teens and early twenties is the time many young people first display signs of mental illness. Bipolar disorder is a real popular diagnosis today and especially with people with autism. In my limited experience, people with bipolar disorder don't change from one minute to the next. My son can be wonderful one minute and angry the next and right on to out of control. What I'm starting to understand now is that maybe that isn't bipolar - maybe that's the autism. So who cares about the diagnosis, not me anymore. The point is that if it's the autism, the drugs for bipolar disorder may not be the answer. I'm not saying drugs won't help or be part of the answer, but behavior therapy could be a huge help. Maybe we're thinking they are acting fine and feeling fine because they don't recognize the signs of anxiety so they finally get to the out of control point without displaying other signs of worsening anxiety. It seems the key is realizing what causes the anxiety. Even more high functioning people with autism could need a lot of structure. I don't know if Andrews improvement is typical. I'll ask Dr. Wahlberg at the next appointment. Another thing Dr. Wahlberg taught me is that everyone should use the same script when talking to the person with autism about important things. For instance Andrew is now in a facility that he would like to move out of. Ofcourse when we find (or maybe create) another place Andrew will be reluctant to actually move. So when Andrew asks about moving, Dr. Wahlberg and I always say the same thing. I've also asked the rest of the family to script some things. Andrew has been helped so much by all this that I'm anxious to get the word out in case it can help anyone else. This is not any crazy therapy or maybe not an answer for everyone, but it is working for us. If you live in the Chicago area or just want to talk more about this you can always contact me at [email protected].

I was so desperate before. I kept the kitchen knives up under my bed so they wouldn't be so accessible. Things aren't perfect and I know at any time I could not realize what is causing Andrew anxiety and he could have an outburst, but it is 100% better than one year ago. Don't ever give up hope that things can improve.


Name: LettyVLO | Date: Nov 9th, 2007 12:28 AM
Thanks for thinking about Stephen.

Since Nov 1 Stephen has been home. I will not send him to school until they provide the funds for the non public school. His teacher keeped calling me every other day to tell me he had a "Bad Day" and how his behaviors are unpredictable. He is afraid for the other students. And now that the sh*! has hit the ceiling he now tells his principle "No Stephen is fine" I am in the middle of a due process hearing on Nov 27. Til then I have Stephen.
Has anyone read the book "They call him Gabriel-growing up severely autistic" Bye Kate Rankin
It is not ment to be a success story, she wrote it to telll people how severe autism can be. I recommened it. 

Name: JAN | Date: Nov 9th, 2007 3:27 AM

Sorry to hear about the really bad time you and Stephen are going through. Is Stephens behavior better at home? What do you mean he is totally helpless - you wrote that a while ago. Working with school systems can be awful. My experiences with private schools was a little better. I am amazed every day how little - supposed professionals - know about autism. If you have a kid who is aggressive it feels so lonley when nobody knows what to do and it seems no one wants them. There was this place in Des Plaines, Illinois that I visited last year. They have a residential facility and a workshop. I think they said about 50% of their clients have autism. They really seemed to be in tune with how to deal with behaviors associated with autism. How old will all the people with autism have to be before there are acceptable places for them?
Sorry for all the questions. I don't mean to pry. I'm just interested because I keep hearing about all the aggressive behavior in teens and adults with autism.
Thanks for the book recommendation. I'm going to look for it.

Name: LettyVLO | Date: Nov 9th, 2007 5:09 PM
I don't mind you asking questions. Stephen is helpless because he doesn't dress himself, he cannot communicate his needs, he cannot comprehend simple commands, he doesn't no danger, he can literally jump from anything without thinking he maybe hurt (he actually jumped from his 2nd story window. Shattered his foot. Required surgery. Was in a body cast to keep him from pulling out the screws.) Chronologically is working at 10-24 mos Hopefully I won't have any trouble with the district and have them fund this school I found 30 min from me. They have a autism program .
The book is wonderful. Please read it. 

Name: JAN | Date: Nov 18th, 2007 6:08 PM
Letty and all,

Hope all is going ok with Stephen at home. Where do you live and what is the autism program like at the school you found? Is the school residential and is it just to age 21 or longer?

Andrew had a meltdown last week and sounded horrible. He was very nasty and aggressive to the people he lives with. I was supposed to take him with me yesterday to pick up my mom for Thanksgiving. No way could I take him in the car with me when he is like that. I did talk to him last night and he sounded good. Now if I can only not let myself go up and down with him.
Would like to hear from everyone.

Name: momathome | Date: Nov 18th, 2007 10:48 PM
Hi everyone!
I'm sorry I haven't written for awhile. I just wanted to let you know how things are going.
First a question for Jan. Was Andrew happy about moving out?
I'm having a tough time convincing Steven it will be good for him. So of course I'm feeling guilty. But I know it's best.
I go to the intake meeting tomorrow so pray for us. I'll let you know how it goes.
Steven has had a couple of meltdowns but not at home, at work and when he was with my son at his home. His ocd has increased. ( he washes his hands till they are so chapped they bleed) He dissasembles his vaccum into pieces then puts it back together. Cleaning each piece. Of course it no longer works. He is agitated. I know its because of the move. You can feel the tension. I hope they can help him deal with it. Well I'll let you know. 

Name: LettyVLO | Date: Nov 19th, 2007 6:40 AM
I hear all you MOMs {{{HUG}}} Yes guilt is plays a HUGE role in my life right now. His behaviors can go from peaceful and loving to just terrible. I have had alot of meltdowns with Stephen lately and I know it is because he is not doing much lately. He is just at home. But I can't send him to school because the teacher can't control him and for his safety and the safety of the other children it is best to keep in at home. We hope that when our meeting on Nov 27 with the school district they will fund a private school to deal with at risk kids with severe behavior problems.
This Fri was the worst yet. I had put him in the truck to drive around for some fresh air. As we pulled in our driveway he (usually walks with me to the front door) NOT this time. He started to walk down the street. I pulled amit and said "Stephen No come home" he refused and started to pull away. He is too heavy strong and taller then me. I had no choice to call 911 for assist and getting Stephen back in the house. I cried "someone help me PLEASE!" My nieghbor came out and looked at how Stephen was and turned back into his house. I said "But I just need you to call 911 for me" Luckily my 74 yr old neighbor walked over and grabbed his arms and just started to pull. I tried to hold his legs but he started to kick and scream. We got him in after a15 min. I was an emotional wreak. I knew then that this can't be happening. I, me can't control my son . I spoke with his regional center worker and left a message and said "we need to talk about placement" Emotionally and physically I can't handle him anymore. But the tremendous amount of guilt inside me is ripping me up .
I am trying real hard to stay focused but I see no other way.
THe private school that I want him to go has no live in but I am sure the distric won't way for that. It would need to come of us. BUT WHERE? SO hard. Any ideas? 

Name: JAN | Date: Nov 27th, 2007 3:35 AM
Hello Letty, Mom at home and everyone,

In answer to your question about when Andrew moved out - he would say he thought he would like it but then change his mind. The people who ran the group homes didn't get how awful it was when they told him he would be going to one group home but then changed it to another one. That happened three times. At the time I didn't understand how much Andrew needed structure and predictability so the whole thing turned into a huge disaster. I believe the thing to do is visit the place often. You know you go together for ten minutes and then both leave. Maybe you stay a little longer the next time and then finally he stays there for a little while by himself. Steven should know each time how long he will be staying and all the details of the visit. Hopefully, knowing the schedule ahead of time and sticking to it, will ease some of the anxiety for Steven.

Letty, I do know what you're going through, as I'm sure so many of us have been in similar circumstances. It's awful and depressing and gut wrenching at times. As I think Karen said at the beginning of this thread - this isn't a job for the weak. Although sometimes wouldn't you just love to give up and go to bed and put the covers over your head? It must be the love we have for our children that keeps us going - oh yeah, and the guilt!! When I read what you wrote the other day, I was overwhelmed. I felt so badly for all of us. Andrew has been keeping me on a roller coaster the past week. The good news is, even though he keeps having these little melt downs, he also pulls himself out of it. I credit Dr. Wahlberg for that. Things are good today. Took Andrew out for dinner and Christmas shopping tonight. We had a great time and he was his charming self. Can never know how he will be tomorrow.

How are things today Letty and mom at home? What state do you live in? Are you single Moms like me?
Wishing you some peace in your life,

Name: LettyVLO | Date: Nov 27th, 2007 4:05 AM
Thanks for your kind words.
Stephen is considered severely autistic. Non Verbal, (severe)OCD & anxiety, oppositional defiant disorder, intermittent explosive disorder. We do not take him out of the house at all. His behaviors are really bad. At home he can be "OK" but when he has his meltdowns I just cry my eyes out. My husband is a great help but he works and is home on weekends. I have no family to "help".
We have his meeting IEP/due process hearing tomorrow. I hope for no problems and a non public school.
And yes I do feel like throwing the covers over my head. But I say "I want to run and run 1,000 miles"
I worry because I know he has these crying fits where he cries and cries like..........heartbreaking cry. Tears fall down his face and just looks up, I don't know how to make it better ALL I can do is hug him and rub his back. I honestly don't think people at the home will do that. THAT breaks my heart. Its not fair to either one of us. 

Name: Irma Slater | Date: Nov 28th, 2007 1:08 AM
Hi, my name is Irma,
my son Shern is not quite as old as Cliff. He is 15yrs. old and so he has been with me a while and we have gone through our up's and downs through ou the years. I must say I thank GOD each and everyday for his help and for giving me the strengh to endure some of the hardships that Shern and I have had to face. Unlike some autistic young people Shern has ADHD and he is none verbal. He has been on some of every type of medication that you can name before the age of 15 and I have just learned to be strong for him and lean up on GOD for direction. I know how hard it is in fact I am living testimony . But through it all Shern seems to make the family laugh with the funny gestures and his around wit. He enjoy having him here and won't trade him for the world. He too stays up sometimes all night long and I don't get any sleep. I guess this thing is a battle for them just as it is for us parents. I have learned to have patience and understanding. I find so many parents that have for harder battles than myself and I consider myself blessed to have my autistic baby. And now that I have found this website I know that this battle belongs to more than me and my family. 

Name: JAN | Date: Nov 29th, 2007 2:54 AM
Hi Letty, Claudia and everyone,

Letty, how did the meeting go yesterday?
Claudia, did Steven go to the group home? If so, how did that go?
I was interested to read what you, Letty, said about Stephen crying. Andrew has only cried a few times since he was a small child. Twice was when I tried to talk to him about his disabilites, he just sobbed and sobbed. The third time was on the way to the group home.

The main reason I participate in this is to give and get support. However, I have to take this opportunity to network. One time I mentioned about the farms for people with autism. If you don't know about them , check it out on the internet. There are some in the US and more in Europe. There is so much focus on children with autism right now. That is wonderful, but what about us and our older children. Someday there will be lots of different choices for adults with autism because there will be too many to be ignored. I don't want to wait another twenty years. I don't think Andrew can live like he is for twenty years and I will be an old woman. Am getting there faster and faster every day. Dr. Wahlberg is a great guy who really is devoting his career to people with autism. He doesn't have any real radical ideas or treatments, just basic behavior therapy that seems to work. He doesn't oppose meds but thinks there other ways to treat those meltdowns that we are all familiar with. We don't really want the state involved. The state of Illinois already isn't doing such a great job and we don't want them making decisions. So we need to find an organization or an individual with resources to fund this project. I'm overwhelmed with this because it certainly is outside my area of knowledge, but I can't sit back and wait anymore. Hopefully, I'll talk about this idea to enough people that eventually we'll find a way to build a beautiful farm that is a real home to adults with autism.

Welcome Irma. Sounds like all our boys have some things in common.


Name: LettyVLO | Date: Nov 29th, 2007 4:08 PM
All went well at the meeting. The district, county principle, his teacher, regional center worker & us were there. It took almost an hour to get his teacher to admit that Stephen's behaviors are really bad. The county/district do not want to pay for a non public school (geered for at risk students) they "think" that they provide enough structure in the classroom (I don't think so) They finally said that they will have a meeting with West Selpa (higher than the district/county) to AGREE to the placement. They think the time frame is 2 weeks before we hear anything. I hope we don't have any problems.
I live in Southern CA. 

Name: JAN | Date: Nov 29th, 2007 5:24 PM

What kind of a private facility is it? Do they deal just with autism? Why do you think you can handle Stephen most of the time and the teacher can't? Sorry, full of questions today.

I read something interesting on the internet last night. It was on one of the national autism organizations websites. It said they used to think 70% of people with autism had mental retardation and now they think only 30%. HMMMM.
Hope you have a peaceful day.


Name: momathome | Date: Dec 2nd, 2007 7:33 PM
Hi everyone. I went to the intake meeting and all went well. Steven will be moving in after the first of the year. I wanted to wait till the holidays were over. Things have been going pretty well at home. Here's hoping things go well for all of you over the holidays Merry Christmas if I don't get a chance to log on again. I'll let you know how it goes. 

Name: momathome | Date: Dec 2nd, 2007 8:25 PM
I forgot to tellyou that I'm in Salt Lake City, Utah. I think it's a great Idea for Steven to visit. for short periods before the move.
I talked to the home and he's going to go there on Friday's for dinner. I found it interesting the Andrew didn't cry much the same is true for Steven only on rare occasions. When his grandma died, when he lost a lawn mowing job in the neighborhood, and just this last month when he was at work because he doesn't want to move out. I too pray alot . Good luck Letty with your meeting. 

Name: LettyVLO | Date: Dec 8th, 2007 1:33 AM
Hello Everyone
The meeting with West Selpa, district, county principle & us was this morning. They want to send Stephen to Pyramid Autism School in Orange County. It is geered for kids with severe autism. We need the OK from the director of the school. She will make the final decision whether Stephen is severe enough to attend the school. Hopefully he will attend by Dec.17. HOPE 

Name: JAN | Date: Dec 9th, 2007 3:09 PM

Things seem to be moving forward. I hope Stephen is accepted, for him and for you. Dec 17th is soon!!! Thinking of you today.


Name: LettyVLO | Date: Dec 29th, 2007 6:49 PM
Stephen started his new school. He seems to like like. He is testing the staff ALOT. He is doing well despite all his little behaviors. Thanks 

Name: Lori Masters | Date: Dec 31st, 2007 7:41 PM
Hi Karen,

My son Josh is 17. He is high functioning autistic (they originally called it PDD-NOS....which I'm sure you know is just a lovely way to say Autism with lots of function (Pervasive Developmental Disorder-Not Otherwise Specified). Josh is one of the all-time coolest kids I know.

I really hope that you go onto this site and check your replies. I'd love to hear your helpful hints, and would love to chat and be able to give some support if you need it as well! You and hubby sound like wonderful people. I think God reserves Autism for really great parents.

Let me know if you get this! Lori 

Name: Lori Masters | Date: Dec 31st, 2007 7:43 PM
LOLOL I just saw that I could scroll down and see that this is an active site! Oh gosh I'm laughing so hard....

To all parents out there.....happy and healthy 2008. God bless. ALL OF US! 

Name: LettyVLO | Date: Jan 4th, 2008 3:58 AM
Happy New Year to all of you!
Stephen has been doing well at home. He had started his new school but he has been at home since. Winter break and that they can't get any transportation. It is a 50 min drive to and from his new school. I did it for 3 days and on the third day was stuck in traffic for almost 3 hours coming home! Can't seem to get his routine going here. I have an 8 yr old that I need to see going to school too. UGH! 

Name: phc64 | Date: Jan 5th, 2008 7:42 PM
Hi Karen!
I just joined this site, was glad to find something like it. Sometimes it really does seem like nobody could possibly understand what I've been through, not even my husband.
Our son is 15 years old, non verbal ,with toilet issues and occasional aggressions. Since last year he is on a low dose of Risperdal, which helps a bit, but when Rob has phases of aggression, it gets almost unmanagable. Most of the time he is a sweet guy though, so when other people suggest we put him in a facility, I have a hard time even just thinking of it.
All the stress raising him has put alot of strain on my marriage, last year especially, so we have been in counselling.
And of course life for my teenage daughter has been hard in many ways as well. My kids are twins, so she never knew anything different.
I'm not sure how I stayed relatively sane all these years, but it has been getting harder lately.

Name: jj mccarthy | Date: Jan 6th, 2008 5:11 PM
I have a 14 year old son. He has been in an autistic program since shortly before his third birthday. He has made progress but it has been small steps. He will now answer yes/no questions and speak one or two words although not very clearly. He will only eat 5 different foods and has a habit of eating drywall. We have managed but now I find myself running out of steam. He is becoming very aggressive and will hit when he doesn't get his way. The problem is he's six feet tall and still growing. Before it wa just me but now it is his dad and big brother too. I also have a 9 year daughter that i worry about. We are trying new medications but with little results. I don't want to drug him into good behavior but for the first time I am afraid. I don't want to send him away but our relatives and his teachers are trying to convince me this is probably the best thing for all involved. 

Name: LettyVLO | Date: Jan 8th, 2008 4:44 PM
I know how all you ladies feel. Stephen will be 16 next month. I have been through it ALL, believe me. He is 5'9 and 188 pounds now. He is severe autistic, non verbal and receptive language is very limited. I have tried the medications, O.T. therapy, sensory therapy, bought many "things" (weighted blanket, chewing tools for example) to calm him down, PRAYERS, lots of Prayers but NOTHING works (OH) gluten free diet that did NOT work. We are "trapped" in our home when he is home. We cannot take him out into the community, He will grab whatever he wants and throws a fit if you try and stop him. The talk of "placement" has been discussed with our Regional Center worker, I have tremendous guilt, failure and defeat from this disease. I love my son but I have not found the right help.
He too can get aggressive at times. I am just tired physically and emotionally. These poor kids with severe autism are greatly over looked. 

Name: JAN | Date: Jan 11th, 2008 3:18 AM
Andrew is going through a bad time again. He will be hospitalized again tonight. For the first time I'm not going and the guilt is overwhelming. Why isn't there any place for him where they understand autism and everything is coordinated? I could ramble on forever. Am devastated again. It is getting harder and harder to have any hope that things will ever get any better for any length of time. Sorry for this depressing message, but you are the only ones who know. 

Name: LettyVLO | Date: Jan 12th, 2008 1:32 AM
I am so very sorry. From the bottom of my heart I am deeply sorry. I hope Andrew gets the help he needs at the hospital. When these things happen you lose all faith. Everyone and everything is without hope. It is terrible frustrating!
When Stephen first had his gran mal seizure in Aug 2007, I called 911 and the paramedics came. They strapped him down to the gurney and took him to the ER. ER Doctor said they "couldn't run ANY test" because Stephen wouldn't stay still. They did not want to sedate him because the brain waves would show in inaccurate reading. So I asked "but why did he have a seizure??" they said "we don't know, you have to see personal physician" He was released that same day. He had 2 seizures that day. NO ONE could help us in that situaion.
Yesturday Stephen's regional center worker asked me "do you have an emergency plan in case you have evacuate?" It got me thinking....I couldn't take my son to a shelter or a hospital. He would have meltdowns and become violent in a isolated enviroment. LIKE Stephen I would probably go crazy/mental breakdown.
When these thing happen I am totally lost and helpless with Stephen.
Jan I share in your broken heart {{{HUG}}} I hope it gets better soon. 

Name: phc64 | Date: Jan 13th, 2008 2:27 AM
This is a question for Jan:
I live in Illinois as well, Dekalb to be exact. A while back you mentioned a facility in DesPlaines, do you know the name of it?
We are slowly accepting the fact, that someday soon we have to let our son go. So any info about placements in the Chicago area would be helpful. I read about the idea for a farm for autistic adults, I think that is a wonderful thing to hope for. Who is involved in that?

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