Why am I so Angry? | Autism PDD
Hi Terri,
First, I wanted to say that the anger CAN be turned around into becoming quite the passionate advocate, and it sounds like that's what you've done, so KUDOS to you!!! Just getting them to move up the evals is a big step.
Next I wanted to say they HAVE to take your outside information into account. You can always point out that none of them are Autism/PDD specialists (assuming that) and they are school personnel, not medical professionals, and therefore, cannot override a medical dx. If they insist, have them put in writing that "they are overriding a medical diagnosis" (I almost guarantee they won't do it.)
Finally, it sounds like we've been through the same thing all these years. My son will be 9 this month, always had "issues" but medical issues took priority until the last year or so. Riley was officially dx'd with Autism last month, we made it through our appts....so like you, feeling very "late" in doing anything (although he did have ST and OT since age 3). But someone else from the board (Michelle) reminded me that we didn't do "nothing" but worked on what needed help the most at any given time....it really made me feel better. I always told myself that, but hearing someone else say it kind of made it feel "true"...
I'm so glad you're "on the case" as I call it...and don't let your [understandable] anger bring you down but let it empower you to do all you can for your daughter.
Good job Terri! Welcome back!
~Lesley
I am in the process of finding out what the school will say when I show them what AJ needs just for speech alone...5 times a week (1 hr intervals) and that is the "minimum" I am sure this is a never ending battle with the school district. However, I do "believe" that once they see that you are not playing games, they will treat you with respect and give you what you ask for..well, at least that is what i am hoping. I have an attorney now (paid for by regional center cuz they couldn't help me NOW) she will be coming with to the IEP meetings. :) It does get exhausting at times to keep pushing for help for your child, BUT it is your child and ALL of it is worth it! IF you feel there is a need for an IEP, you can call one at anytime. Also, in this book that I am reading...states to ask who will be the overseer to be sure whatever is in the IEP is being followed through with. Sounds good to me! :) If you write a letter to the school, be sure you take it there yourself and have them stamp and initial it..get a copy for yourself, too. This way they can't say it got lost in the mail. WOW, is all I can say. Thank you all for the support. I had spent so many hours during the week I first wrote that post on my computer. I think I overwhelmed myself with information. I started to obsess and we all know that is not a good thing. , So, I took a break from my computer and now I am more settled. I have since had a team meeting at my daughter's school to reevaluate her IEP. Gee, that went well. I was the only one at that table without a degree and yet I felt like the only one with a shred of intelligence. As a result of the meeting they are moving her 3 year evaluation up a few months and will conduct it in the next few weeks. If history repeats itself they will then dissagree with everything in the report from my outside evaluation. I have read some good advice about keeping good records and documenting everything. I think at this point I am going to get an advocate. It is very unfortunate that I have to spend money I really don't have to fight for something that rightfully belongs to my daughter. I wish I could say I was done being angry but I think I may have downgraded to pissed off. Thank you again for all the kind words and I really look forward to chatting with all of you.I, too, started to lose my faith when Luke was diagnosed. I've
regained my faith, and even moreso be/c I feel like my faith in God is
much more mature than ever before. I used to think that praying
was like 'rubbing a genie lantern' and all my wishes would be answered,
exactly how I asked for them to be granted. Now I realize that
God does answer all prayers -- not necessarily in the way WE think they
should be answered, but in the way that He knows is best. I also
don't believe that God made Luke have autism. I think God gives
me the strength to deal with it, the willpower to keep on going when he
starts to regress, and the willingness to 'come together' with good
people like you all to help give each other the fortitude and courage
we need for our everyday struggles. My heart goes out to you. My daughter started making the rounds to doctors, regional centers, blah blah and everyone said she'll be fine. At 4 she finally got the diagnosis. The time wasted makes us so angry - some days are more difficult then others. My daughter has lost all her friends - basically because they just don't get autism (you'd think Gia had leprosy). What hurts the most is that our family doesn't get it. Some of the comments you wouldn't believe...then again, I'm sure you've heard them from some of your family members. One thing we have been blessed with is my daughter and my relationship is extremely close. We have always been close but there would be a lot of petty arguments. Now we are as one with our dedication and love for Gia. I'm so proud of my daughter for the hard work and care she gives to Gia as all of you mothers do to raise these wonderful challenging children. Just don't ever take no for an answer - question, question, question and definitely get an advocate. Keep really good records. Right now, (this is a perfect Grandma job) I'm putting all of the IEPs, IPP's, assessments, notes - anything I can find re: Gia in a three ring notebook with a table of contents - so everything is right there at our fingertips. We are going to have an attorney sit in on the next IEP! Take care My son is 10 and on the spectrum. If you would meet him casually, you would probably not think anything is wrong. If you spend time with him you can tell he is different. Was I angry when he was dx'd. YES...at myself and the world around me. I had taken him to the school when he was 3 and they told me to take him to a psych. I couldn't bring myself to do it. Then when he was 7 he was dx'd with anxiety disorder, add, and PDD NOS. I wish now I would have known before. Someone asked me if I wanted him "cured" I told them no. I love him how he is. Although it can be frustrating. God gave him to me this way for a reason. Yes, I want him to thrive and be able to live within the bounds of society. And yes, I get VERY ANGRY with him sometimes daily. But I couldn't see him any other way. There is a very good poem by Irma Bombeck on the Jaynagirl website. It is all about how God picked you to be the mother of a special needs child. It is very comforting. I hope everything works out for you. terriv103 ~ HUGS! I agree with what Jean says...it's all perfectly normal to be feeling. Dr. Kubler-Ross identified five stages...and it can't be more true: denial/isolation, anger, depression, bargaining and acceptance. Personally, I don't think you're ever "out of the cycle"...like Jean said, over time it's less severe, or maybe you spend more time in one phase before moving onto the next...one mother told me it's a constant cycle, and even after 7 years, she still goes back to diff't stages. IT'S OK...it's normal! Link to: I need inspiration....anybody else? I, too, was very mad at GOD! I kept losing faith 'cuz my prayers were not being answered. I thought if GOD can divide the red sea and move mountains...why O why can't he make my son normal. All it would take is a blink of his magical eye...IF that! Also, I ASKED my pediatrician about shots prior to my son getting them. He said the mercury that are in these shots these days are hardly anything AND it was safe for AJ to get them. I don't know if vaccines are at fault here OR just my scapegoat. I just KNOW how hard it is to cope with all this and the anger that comes with it. I feel envious that my hubby gets to work outside the house and gets to talk to people. Here I hafta deal with AJ by myself cuz I don't have family or friends here. I am thinking about going to church with AJ's bus driver as I really do NEED strength and guidance to help me through all this. I am very happy to have found this board! It is nice to KNOW that I am not alone and there are others who can "truly" understand my feelings. Thank you ALL!!!! ; ; Screech_2001 - Your post sounds like something I would write. I have no family or friends in this city. We moved here a year ago and I did become friends with a neighbor but once I told her that Noah has autism I haven't heard from her since! and that was almost two months ago. I become jealous of my dh who gets to go to work everyday and talk to others. I'm having trouble with my faith. When I talked to my priest about Noah I told him that I prayed for Noah's health when his was in my womb - but then he was born with spina bifida and missing a portion of his brain. I continued to pray for his health and that he would grow up to be happy and one of God's special people.....but this is NOT WHAT I MEANT BY SPECIAL! Now he has autism. So I asked the priest "why pray?" what's the point? He told me that Noah is perfect to God, and that just because Noah doesn't meet my standards of "healthy" doesn't mean that he isn't. He also told me that praying isn't like rubbing a latern and having a genie give you what you want. And I can't complain, because Noah could be a lot worse. I don't even get sad about it anymore (at least not lately). Noah makes me proud all the time and lately it seems like he is a little easier to handle (maybe he's maturing somewhat). Where do you live? I'd love to meet people close by in a situation similar to mine. Terriv103 - Angry, devastated, sad, alone -- YES! We have all felt these things. My situation isn't the same as yours but I can somewhat understand how you feel, and trust me, you are not alone! We are all here for you! With so many children diagnosed with autism you are certainly not alone in this world even though it seems like it. Take care of yourself and try not to beat yourself up because it sounds like you were doing the right things. The doctors though...they are another story. Keep us posted, Stephanie Stephanie, What a wise and kind person you are! I am so sad that your newly made friend hasnt been around, are you sure it is because of what you think it is because of? If you really liked this person, perhaps you should try again and you may find that she really needs you for some reason or another. I strongly urge you to contact your nearest chapter of ASA http://www.autism-society.org/site/PageServer?pagename=Chapt erMap I put this off and put thisoff, I thought so many things that I let hold me back from calling. Their kids are not as severe as mine, they have more money and can give their children expensive therapy that I cant afford, they wont like me, Etc, etc, etc. Then I finally felt that I had NO choice but to contact them. Truth be told, our Psychologist called our state dept of children with special needs, trying to find us some help and information about my son's educational needs and the state gave her the number for our local ASA. I sent an email, very leery and not really wanting to at all. I can not tell you how OVERWHELMED I have been with phone calls and emails and support and information and understanding and friendship. I still have not done anything with the group yet, this past weekend they rented out a section at the local baseball team and had family day out. They have Mothers day out (INCLUDING CHILDCARE), monthly meetings, a lending library and people who really and honestly understand what you are going through, becaus ethey either have already been there or they are there right now. They have provided me with the names of PEdi Allergists, Pedi dentist, respite workers, directed me as to how to get my child his Medicaid , 3 have reviewed his IEP and 2 are going with me to our next meeting (which they directed me as to how to request it). I so understand missing work and worrying about silly things like, do my hose match my skirt and is my makeup on right...LOL!!!!!!!!!!It is very, very difficult and while I dont mean to sound like I would not give my life for my son (I would in a heart beat), I still am having to relearn how to try to make a little bit of a life for myself. We do have to have our mental and physical health, or we are of no good to our special kids (JMHO). ((((HUGS)))) to all of you, you are my support and my inspiration and I just want you all to know that I admire you and draw strength from you. I just wish I lived closer to you all, wouldnt it be wonderful!!!!!!!!! My 9 year old was just diagnosed with PDD-NOS. She has had real issues since she was born, both medical as well as psychological. Everyone, including my husband and every doctor I ever took her to insisted that eventually she would be fine. Well, she is not fine and now that it has been confirmed I can't get a grip on my anger. I am angry at the doctors, at myself, and sometimes even at my own kids lately. In the span of one hour I can be laughing , crying, throwing something and then back to crying. Has anyone else noticed that their friends and family only want to talk about this to a certain point and then you can tell they wish you would move on? Has anyone else experienced this kind of anger? It's all I think about, but I can't reach out to anyone. We just got her diagnosis 3 weeks ago. I have two older children and I am worried about them too. I would love to hear from anyone, I really am losing control. First off, let me assure you that you ar ereacting perfectly normal. I have had my DS's dx since 02/17/04 and I still do everything that you mentioned in your post, just not as often and perhaps, not as severe as at first. I was so very, very, very angry!!!!!!!!!!!!!!!!!!!The Ped PROMISED me that DS was fine, that shots did not in any way contribute to ASD, that my son was a little slow, he was a boy, his dad and I were spoiling him terribly, etc, etc. I also must confess that I was pretty darned angry at GOD!!!!!!!!!!!!!! How could he do this? What had I dont? Why could he not let my DS be fine and let me have the trouble, etc, etc (Actually I beleive that I more or less went through the same process that Kubler -Ross outlined for dying people. We know these steps do not go in any order, some are skipped altogether and some are repeated. I still repeat some from time to time and I still get so *&^% mad sometimes!!!!!!!!! It isnt 'fair'!!!!!!!!!!! This link was informayive to me, you may or may not want to checkit out and it may or may not be of use to you. http://www.counselingforloss.com/article8.htm Friends and family often are at a loss as to what to say and do (IMHO). Mine are in total denial and I let that lie for now, just as I let my DH live in that state for almost 2 years, as he slowly came to the point that he could not deny the problem anymore. I always offer to share events, concerns, etc with him, but I never push him. Friends and family that are not supportive, I just let them go, it is not their responsibility, they do not have to care or understand. You may be surprise who will prove supportive (I was ) and disappointed in who doesnt bother to care. One life long friend, cried a tear or two and then told me that these things happen, we dont get to pick and choose and we have to make the best of it, there is no other choice. She has known some hard times herself and I must confess that after my initialy feeling ange at her (she just DIDNT understand), I then remembered that she had lost a 9 month old to SIDS, almost died from a cardiac infection / myopathy, has a child who has severe ADHD (back when it was hardly ever heard of and they went all over the country trying to get him a diagnosis and figure out how to help him). She offered me her ongoing support and friendship and reminded me that there are always others who have it worse and we just have to go on. I still sometimes loose sight of that and sometimes I have to struggle with depression and anxiety (diagnosed after DS was diagnosed). I have took antidepressants on 2 different occasions and will not hesitate to take them again if I feel myself being overwhelmingly depressed and anxious. Sorry that I am rambling, but I want you to know that you are certainly not alone in the struggle we go through AFTER the diagnosis. But reallly, the diagnosis is just the START of the work. Welcome to our group! I am sure everyone joins me in offering our support and understanding. When you are ready, I encourage you to contact your local chapter of Autsim Society of America, where you will find parents that will welcome you with open arms ,understanding, education and real life support! I hold your family in my thoughts and prayers, asking you return the favor. Yes! Yes! Yes! I sometimes wish I could afford a therapist to talk to, at least he/she would HAVE to listen for an hour. My husband is Homer Simpson in human form. He looks into the blank space of nowhere and pretends he is listening to me. He isn't that way all the time but when he does it..URG!@ I do have one friend who goes the distance but she moved away and we aren't as close anymore. Then there is family....family....love em' or hate em' they are family....and good ole mom in law always has the wrong thing to say and finds the right time to say it...meaning she cuts it to the quick and hits me in the gutt w/comments like "Is she still autistic?" and "You worry too much". Yikes! I can't stand it...and she never wants to hear about it. URg...I am done venting...good thing we have this board. It sure helps. mary
Okay, I'm stepping away from the altar now! 
It's tough sometimes to discuss anything other than how Luke is doing,
how he was doing, and how we think he will be doing in the
future. My dh and I really have to force ourselves to discuss
other issues (thankfully he may be offered a new job, which will enable
us to move -- something fun and happy to discuss!). I know
what you mean, though, about how sometimes other people seem not to
want to talk about it. I've come to the conclusion that most
people are basically self-centered (not anyone here though, of course! 
)
and if a matter is not directly related to them, they don't want to
spend a whole lot of time talking about it. Oh well. I
realize, too, that even those people who ARE interested in Luke's
welfare don't want to discuss him 24/7 ... even I need a break every
now and then! That's why I'm so happy I found this forum where
everyone is discussing their kids and we don't have to feel
self-conscious about doing so.
It seems to me that our children are not getting enough therapy....(JMHO) now I have seen 95 year old geriatrics, that had terminal diagnosis. get intensive therapy 5 and 6 days a week for months...becaus eit imporved the quality of their lives. It is like asking for blood to get my son an hour of ST and OT a week....
ROTFLMBO!!!!!!!!!!!!!!!!!! Well, thanks for making me laugh and hey- PO'ed is a step ahead from anger (I think?)
First, I want you to know that you're not alone in feeling how you are...my son will be 9 next month, and we have our "series" of appts. for an official evaluation this month, starting next week. I don't know for sure, but maybe some of what you're feeling is what I'm feeling, the terrible guilt from so much time going by before really knowing the true story. Like you, other medical issues kept me from investigating this aspect of my son, granted, we've always known there was something, but once he got a speech delay and sensory integration dysfunction dx 6 years ago, I let the rest of it go...it wasn't until teachers started pressing me that I started researching this possibility. It was a necessary detour though, maybe like you (?) waiting for so long....my most important mission all these years is figuring out why my son ends up in the hospital every month...fighting doctors that refused to take it seriously, going through 12 pediatricians till I found one that finally led us to an official health dx just this year.
No matter, sometimes I still feel that I neglected to address all the other "Riley-isms" all these years...they weren't "isms" after all, and I do feel bad about it. NEVERTHELESS.....I love my son, I'm sure you love your daughter, I did what I had to AT THE TIME to help him, and now I'll do what I have to now.
It's OK terri - the most important thing is that you don't let the anger and guilt keep you from doing what your daughter needs now....have your outbursts, but let it rejuvinate you, don't let it paralyze you. I've found that my guilt and my anger have created a much stronger fighter in me than I ever knew existed.
This board has been a true blessing to me...so many wise and strong and motivating people, they've taught me so much, I don't feel alone, I don't question things as much because of others stories....Jean is right...contact the ASA and find those people that will help make you strong, give you support, and valuable education!
BIG HUGS TO YOU AND YOUR FAMILY...I'm sending strength your way!
~Lesley
The things that helped me.
Whenever I felt the emotions get overwhelming (I had a new baby as well
and couldn't take drugs because of breastfeeding) I would play tetris
on a little handheld. I found that a few minutes of that would help me
get under control. I think it has something to do with using a
different part of your brain.
I wrote a letter to the Doctor who had brushed me off and assertively
stated my concerns about her lack of empathy, some misinformation she
gave me etc. I actually received a lovely phonecall in response to this.
I joined a support group. I talked to friends who wanted to listen.
I went to a respite camp where I learnt to do something could
Journalling (check out www.wakimbo.com) where I could process my
feelings in a way that helped. I also cried buckets that day.
I decided that the anger would be a fuel to help me do what was needed.
I used the energy to motivate me to research, do therapy etc.
I met other mothers who were in worse circumstances than my own and
thanked God (And I wasn't a Christian at the time) that it was easier
for me. There were other mothers who had it easier and sometimes I
would get jealous but ultimately I realised that it was ok to wish for
life to be easier but I was glad that it was for those Mums and I
certainly didn't wish them to be going through what I was going through.
I very early on started to help others in the same situation. Our
support group had a phone line and as I'm not the bashful or quiet type
(if you hadn't noticed yet) I helped with that. Making sure that others
didn't have to miss out on what they needed was a way to make up for
what I missed out on because of Doctors, Health Sisters etc.
I started to look for 5 things to be grateful for everyday. (Sarah Ban Breathnach)
And I started a real chocolate habit, now that one wasn't so good as I
gained an enormous amount of weight, so I would probably recommend
walking.
It's ok to be angry, finding positive ways to express it is the key and I can tell you it does get easier.
We understand how you feel, come and vent anytime.
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