I've posted here before, but it must have been a while ago.
I've got two kids, a boy who is 5 and a girl who is 3, who are both on the spectrum. I'm in the process of getting my son evaluated by a pediatric neurologist in the hopes of getting better services for him. This is where my real fight lies - with my district. (I am from Long Island, NY.) I get very nervous about my meetings with the district, but I never show it. I sit at the head of the table, with all my paperwork, and get down to business. But this is NOT ME - I became this person. I hate confrontation - but had to get used to it, like it or not. I'm also trying to get help from an advocacy organization, hoping that they will help my voice sound stronger (since my district doesn't seem to be listening to me). My district doesn't believe that my son has tantrums, just because they didn't see him have one in the 20 minutes they observed him! Somehow I have to convince them of that. Good luck to me.
I've just felt so completely alone throughout all of this. My mom passed away (prematurely) a little over two years ago, and she would be such a tremendous help to me if she were still here. My husband and I have been having serious marriage problems, and even separated for a short time last December. (And believe it or not, it has nothing to do with the kids. It has everything to do with him, and the things he's done and not done for me for 17 years!) I really doubt our marriage can be saved, even though he is in counseling and we are going to marriage counseling together. (He's done too much damage for too long. Yet...I let it happen, and should have left long ago.) Anyway....what I'm most surprised of is....I haven't been able to "hook up" with another parent. I was SO hoping to at least make a friend throughout all of this. Someone who had "been there, done that", for a little support, friendship, some laughs now and then to take our mind off our nightmare, etc. I tried twice through my kids' school - nothing. I called "Parent to Parent" - they couldn't find someone!!
I'm just so shocked....the little family I have left (my sisters) don't really want to be around my kids (and won't babysit either, I have no babysitter)....our friends (couples) previous to our kids' being diagnosed, we haven't seen in years....and when I reach out my hand so desperately to organizations and moms for help - I get slapped.
My marriage is absolutely falling apart, and I'm handling this all alone. I just don't know what to do. My kids need me, so I won't give up....but I'm just so miserable.
Patty I am sorry, Patty. I have four children, three with issues, but only one on the spectrum. I don't know how you ladies with more than one do it, though I suppose you just do what you ahve to do! Patty, I am not sure why but I just kept thinking as I read your post that your marriage can be worked out. I don't know you, or what your husband has done but ...thats just what I kept thinking....At least you have him. No, he is not perfect. But he is there, willing to go to counsel and such. Try to not rush things. Maybe God has a miracle in store for you. I am sorry you are so lonely. I understand. I hope you will post here often. There are alot of good people here who care. I saw the pediatric neurologist on Wednesday. She gave my son the diagnosis of PDD-NOS and ADHD. Well, ADHD?? Really mild then...he's pretty attentive for a 5-year-old with ASD. She would not call my son autistic, because she uses that word in it's strongest sense - meaning she would only use it to describe a child who is "in his own world" (her words). So, I went there for a diagnosis to get my son better services, and it looks like I did crap, pretty much. (Two and a half months wasted.) Of course, I'm getting advice now that I should have gone to different places to get him diagnosed...but it's too late now. I can't start up with all of that again...the district will get REALLY MAD at me if I put this meeting off for two months or something. Her report will come in 7-10 days, and I'll see what it says. She wouldn't even write that he needs a consistent 12 month program for me!! And she would NOT give any recommendations for him either! What good is she??? I wasted my time.
LI Advocacy won't attend my next CSE meeting either. They want me to be my son's advocate (which I already am - this isn't brand new to me). They will come with me if the district turns down what I need for my son, so that's good. I just wanted more help at the next meeting, because I feel myself cracking apart...and I want to be able to hold myself together.
Patty PDD-NOS is an autism spectrum disorder, so that's at least something. I'm sorry that you didn't get what you expected in terms of recommendations from the neuro and support from the advocate. Good luck with everything. Patty, I know how you feel about obsessing over placement. I went through that a month ago where I couldn't sleep, couldn't concentrate at work, couldn't talk about anything but autism, because I knew my son was on the fence between mainstream and special ed and I just didn't know what the right answer was. (Didn't puke, but felt like I was going to.) Once I went and observed all possible 1st grade placements, as well as my son in his current placement, the answer became so much clearer and it was like the weight of the world was lifted from my shoulders. I read emotions to advocacy recently and I highly recommend it as well. If you aren't sure where to place your son, I would highly recommend setting up times to observe all of the alternatives. My observations were all 90 minutes, where I got to observe whole class activities as well as small group activities. I also had a chance to talk to each of the teachers during some part of the observation. This made a world of difference to me. Hang in there. ((((HUGS)))) I saw the pediatric neurologist on Wednesday. She gave my son the diagnosis of PDD-NOS and ADHD. Well, ADHD?? Really mild then...he's pretty attentive for a 5-year-old with ASD. She would not call my son autistic, because she uses that word in it's strongest sense - meaning she would only use it to describe a child who is "in his own world" (her words). So, I went there for a diagnosis to get my son better services, and it looks like I did crap, pretty much. What you need is to have your child qualify for services under "autism" in the education code. This is not a diagnosis but an education label. This is why I find going to a neurologist a waste. They think of the BRAIN, they don't think of the CHILD. Psychiatrists, as doctors of the MIND, do. (FELLOW POSTERS -- PLEASE DON'T OVERWHELM ME WITH POSTS ABOUT YOUR NEUROLOGIST WHO IS GREAT...CLEARLY, THERE ARE EXCEPTIONS TO EVERY RULE). This is particularly true on Long Island. To get a medical diagnosis of an autism spectrum disorder (autism, PDD-NOS or Asperger's), I'd take my child to the Cody Center in Port Jeff Station or LIJ Center for Autism in Bethpage. A medical diagnosis is not only not necessary for an educational label of autism, but it doesn't even GUARANTEE and educational label of autism (there has to be a negative "educational" effect). Look up in the Part 200 (you must become VERY familiar with that document if you hope to truly advocate for your son) the legal definition of the autism label as well as the legal definition of "education." In New York State, any child who is classified under autism gets special guarantees that no other classification gets, so it's worth pursuing. I believe you need a professional advoate at this point. If I were you, I'd call Marilee Shannon, the best special education advocate on Long Island. She's worth the money and perhaps she can just make a phone call to the District which will help (and won't be that costly). Her phone number is: 631-666-1053 PS -- What Long Island Advocacy means is that you must read and understand IDEA 2004, read and understand NYS's Part 200, find out your rights, invoke them, keep good records, put everything IN WRITING and understand what it is your child (and you) have a right to expect. LI Adv. can help you learn to do that, but they expect us parents to advocate for our kids ourselves, with them giving us some guidance, not actually showing up at our meetings except in very rare circumstances. Advocacy takes time to learn how to do. In the meantime, someone like Marilee can set the District straight. Of course, this sort of help costs. Thank you everyone. I really appreciate your input. When I get the report from the neurologist, I'll post what she says here. It'll probably be in a week or so. I've been obsessing over how/where to place my son...I'm actually getting physically ill because of it. I'm already clinically depressed and I don't need to be physically sick on top of it. I've decided that I should really devote a couple of days a week to NOT looking at anything regarding autism, PDD-NOS, etc. I can't do anyone any good if I'm throwing up all the time. (Sorry, but true.) I will try and play it cool, get to know IDEA 2004 and NYS's Part 200. Believe me - I won't agree to or sign anything that isn't good enough for my son. I'm not sure if I'll go it alone or hire an advocate for the next meeting at this point. I should be getting that book that Tzoya is such a fan of - "From Emotions to Advocacy", any day now. Maybe that will help me more. Thanks again, Patty I knew this was just more of the same. He went out anyways, and figured I was too dumb to notice that he was just starting to cook?? I called him upstairs and saw instantly he was intoxicated and my heart sank. I have no friends either, and nobody really relates to my situation. I would love to be able to find someone going through the same things as me. We've been together for 12 yrs, married 11, and nothing has changed. I live as a single parent, of not 2 children, but three!! I'm sure you are totally tired of this lifestyle. I know I am, and it has caused me many nites of panic attacks, as well as health problems. [/QUOTE] Just like my mother always used to tell me, "Patty, it could be worse!" My husband doesn't drink, so I guess I have to be thankful for that. (But like I said, there is A LOT more that I could say that would curl your hair....when it comes to my husband and how he's treated me for 17 years now.) So, I hear you....loud and clear. My dad was an absent father/alcoholic....so I know what it's like to be disappointed time and time again because the most important man in your life would rather get drunk. (It's worse for you because it's your husband, of course.) Like you, I had major stress issues before all this happened. Now I need Xanax or Ambien just to fall asleep at night. I always feel like I'm on the brink of a heart attack....which is why I'm trying so hard to find another mom to talk to. You know, just to make a friend....I don't know why it's so hard.
Thanks for your support everyone. Patty ladydi ... I think that is wonderful! Unfortunately, I pick badly! Having a husband was (for me) like having a 4th child, with even more needs that I couldn't meet! I am soooo glad I'm single. I hate to say that guys, but I'm happier depending on me and me alone, and not being disappointed by someone else. Was the parent group you tried through Unlocking Autism? If not, here's a list of contact people for them. I haven't dealt with them myself, since they're American and I'm in Norway. http://www.unlockingautism.org/repfinder2.asp?state=NY&a ction=1 Here's an article on support groups, including creating your own: http://www.child-autism-parent-cafe.com/autism-support-group s.html Have you tried videotaping a meltdown to show the so-called experts what you deal with? It is very common for autistic kids to hold it together during the school day, only to release that stress at home, where they're loved and accepted no matter what. Good luck with everything. Patty -- My pm here doesn't work, but please email me at TZoya@aol.com Put Autism in the subject. Let me know where on the Island you live, what school district you're in and the basics about your son. I am a professional advocate now and a parent trainer. I am currently finishing up a course for parents and we've used From Emotions to Advocacy as our text. I HIGHLY recommend it. I personally don't think neurologists are the best doctors for our kids. They are more familiar with the BRAIN, and what we need are doctors of the MIND. A child psychiatrist who specializes in autism is the way to go IMHO. ALL the school districts around here accept and respect reports from the Cody Center in Port Jeff and Fay Lindner Center for Autism in Bethpage. Also, go to this site: http://www.ahany.org/ I moderate their Suffolk Daytime Support Group and I'll be there May 2, if you'd like to come. You have A LOT on your plate. You may not be able to tackle everything at once. I understand that 80% of marriages where there is autism fail. I know you say that your marital issues are not about autism and I believe they're not. I believe that what we're seeing is that marriages that are not that great but might have survived without autism just implode when autism shows up. I have many friends with autistic kids whose marriages got BETTER when autism showed up (my own included) but that's because the marriages were good to start with. Sometimes dealing with autism is like having an elephant crush your head. If the family has issues, it can't hold up to that degree of pressure. It's not your fault. Autism sucks, to put it frankly. But our kids don't, so we all have to learn to deal with the sucky side of autism. For our kids' sake and for our own. Please email. Thanks so much everyone. I have posted a new topic for Tzoya to see and reply to. Thanks again, Patty IPatty, I am not sure why but I just kept thinking as I read your post that your marriage can be worked out. I don't know you, or what your husband has done but ...thats just what I kept thinking....At least you have him. No, he is not perfect. But he is there, willing to go to counsel and such. Try to not rush things. Maybe God has a miracle in store for you. I am sorry you are so lonely. I understand. I hope you will post here often. There are alot of good people here who care. [/QUOTE] Well, there is a lot more to tell about my marriage, but it is WAY too long to post here! He wasn't so willing to go to counseling - I had to make that non-negotiable. Yea, he's here right now...but he's a constant reminder of my pain. It brings me down badly, and I'm already down. I do need him, for financial support and help with my kids. I will not disrupt my children's lives at such a crucial point, so we can't divorce yet. And I sure hope God has a miracle in store for me....with all that's happened, I sure could use it. Thanks, Patty Patty, I know I cant help you, but if I were there I would give you a big hug, hold your hand and LISTEN. You can come here and vent anytime, we are all in similar situations and know the pain, frustration, saddness etc. Patty, I'm in IL, but I am pretty much in the same boat. Tonight was a typical holiday. Me off to a family dinner for easter, and my H refusing to go. He has asperger's and bipolar disorder, as well as a drinking problem. He lied to me once again today. I asked that he please not go out to the bar tonight, and just stay home and make his ham as he planned. Well, he called me crazy, and that he had NO intention of going anywhere. I had a very stressful time at my parents house tonight. My son wasn't doing so well, and the rest of the family couldn't accept his odd behaviors, nor could I find anywhere quiet to bring him. He refused to eat also, and I just looked at him and felt so badly that he couldn't enjoy himself. When I arrived home several hours later I was BEAT. I notice the timer for the ham was set for an hour to go! I left the house at 2pm, and now it was 7pm and he's just now starting dinner? I knew this was just more of the same. He went out anyways, and figured I was too dumb to notice that he was just starting to cook?? I called him upstairs and saw instantly he was intoxicated and my heart sank. I yelled for him to just leave me alone, and that in my eyes he was dead to me. This didn't phase him one bit and he just laughed and them asked me how to glaze the ham.
I have no friends either, and nobody really relates to my situation. I would love to be able to find someone going through the same things as me. We've been together for 12 yrs, married 11, and nothing has changed. I live as a single parent, of not 2 children, but three!! I'm sure you are totally tired of this lifestyle. I know I am, and it has caused me many nites of panic attacks, as well as health problems. Sorry if I was rambling on, but I'm just so sad right now, and can totally know where you're at. Feel free to message me anytime. I'm always up for a good venting. Hi Patty. It sounds like I'm in a similar situation to you--2 kids on the spectrum 5 and 2. I grew up on LI and live in NJ. Autism takes over your life and I can't imagine dealing with it alone. I do have good family support but I'm always eager to make new friends with people who have kids on the spectrum. They are the only ones I can relate to any more. Please send me a private IM--not sure how to do it--if you like. Patty -- I'm sorry I haven't heard from you directly. I live in Shirley (Wm. Floyd SD). I know TONS about resources on Long Island, although I don't know a thing about good marriage counselors. Can you post what school district you are in and what, exactly, the school has said re your son? In NY there are definitely guarantees for kids classified under Autism, but ot be classified under anything, it has to be shown that the disability (in this case, autism) effects the child's education. And "education" means far more than mere academics. It includes things like social skills, functional skills, language pragmatics, behaviors, learning style, etc. Go to www.nysed.gov and search the Part 200. That is NYS's regulation of special education law. Go to 200.13 to see the special guarantees for kids with autism. I am soooo glad I'm single. I hate to say that guys, but I'm happier depending on me and me alone, and not being disappointed by someone else. [/QUOTE] Well, that's really it. My husband isn't much help to me besides helping me with the kids when he comes home (which isn't very much) and giving me his paycheck. I mean - THAT'S IT! The pain he's caused over the years...he can't repair, and doesn't really want to try. He's very into himself and his own interests. I never mattered, after we were married. (He treated me very differently before then.) So, I think once I'm able to make the change (and it's such a HUGE one), I'll probably make it to keep my sanity and give myself some self worth. I can't look at him and think of myself as anything except worthless.
Have you tried videotaping a meltdown to show the so-called experts what you deal with? It is very common for autistic kids to hold it together during the school day, only to release that stress at home, where they're loved and accepted no matter what. Good luck with everything. [/QUOTE] I thought of taping my son just to show the district what I'm dealing with. I thought they would think I set it up on purpose....faking it, when I'm not. I just don't know how they could possibly think that 20-30 minutes in my son's presence makes them an expert on him???
Patty [QUOTE=tzoya]Still haven't gotten it. It's Tuesday at about 4 EST. The email address is TZoya@aol.com[/QUOTE] That's where I sent it. Maybe it's because I have hotmail. I was just about to send it again, and now it's gone from my drafts folder. Dammit. See if it doesn't show up tomorrow. Crap.
Patty Patty -- I'm sorry I haven't heard from you directly. I live in Shirley (Wm. Floyd SD). I know TONS about resources on Long Island, although I don't know a thing about good marriage counselors. Can you post what school district you are in and what, exactly, the school has said re your son? [/QUOTE] Dear Tzoya, I sent you a very detailed e-mail yesterday. I kept a copy of it....I'll try sending it again. Thanks, Patty Thanks so much, Kristy. Hugs back to you!
You're right - and that's exactly what I'm going to do. I've already seen the kindergarten classes at the school he's at now (which I'm told the district will never pay for, but I might not want him in there anyway). I've also seen the district's kindergarten classes, in which the kids are more like my son's peers - but the setting is all wrong and there are NO aides in place. I'm giving a call to my district CSE chairperson on Monday to ask about the other alternatives, which I think is probably just BOCES school - which is OUT, because they offer no special services. They expect a kid to have a full day of school, meaning 8 hours for my son including the bus, and then have speech, pt and ot at night??? Not going to happen. So, I don't think there is much else, but I will ask. I do have a bit of time, a few weeks I imagine, to check out other places...if there are any. Thanks so much. (What support I'm getting from this board!! Can't get it in person - have to find it on the internet!)
Patty P.S. Your boys are ADORABLE!! Best of pals, huh? How sweet.
My son has a PDD-NOS diagnosis, and I have been told that "autism" as in the DSM-IV and "autism" as in the IDEA 2004 are somewhat different. PDD-NOS is on the spectrum and so should be covered by the IDEA 2004, assuming that it affects education. So with a PDD-NOS diagnosis and speech delays my son was able to get special education services until the speech delays were resolved and the SD claimed that there was no longer an impact to education from the PDD-NOS. [We are disputing the last part since his lack of social skills impacts his education, and those around him.]
What you need are some good goals for the IEP. I am still working on figuring out how you get those...
And you know what, today I can have a life. I no longer know what to do with it.
My husband is a good man he loves all of us, he is just old fashioned. I would not trade him for anyone else. We will be married 34 years in May.
We more or less played our roles, he was the provider and I took care of the children.
*gives you a big hug* I can very much identify with you. I just filed for divorce last week. Like you, it wasn't directly related to how my son was treated (though that did play a part) but it's like, after 10 years of just accepting things, fighting for my son made me strong enough to fight for myself too. *s* I am also pretty much on my own, my whole family lives on the west coast, thought we speak on the phone a lot I haven't seen them in a year and a half. I have found the "parenting groups" in this area to be cliquish and didn't have much room to share with someone who doesn't attend their church. My inlaws are in denial, and I am completely on my own.
if can't really give you any advice about the schools, but if you ever want to just talk to someone, my email is : seraphoni@hotmail.com. feel free to mail me, k?
SeraH -- Are you also on Long Island? I'm on Long Island and have been involved with parent groups over the years. You can email me about this at TZoya@aol.comtzoya, thank you, but no, I am in the midwest :)
Copyright Autism-PDD.net