Hi, I haven't been around here much lately due to migraines and needing a break from autism related stuff.
Be nice, please, because I'm bawling
I've seen a counselor, and I've talked to my psychatrist about it. I've told them about my difficulty in "accepting" it and all the advice they've really had to offer is that what I'm feeling is normal, it must be tough, and to talk with other parents.
This is how I see our daughter's autism. I see it as something that has profoundly and permenantly altered our family, and not one bit of it for the better. Our finances, our marriage, our time, our energy, the ability to have the size of family we wanted to have- all of that has been changed. Because of the energy my daughter requires and her needs, I was forced to give up the idea of homeschooling our oldest son (something I've wanted to do since before he was born) and put him in our church's private school (great school, vast majority of the kids at our parish attend there, he's having a blast- but not what I wanted). Many of our routines are punctuated by her screaming. Traveling is out of the question. So is sleeping in, most of the time. For all our activities we have to 1. make the choice not to attend, 2. leave her with a sitter, or 3. go and realize we're leaving earlier, that we won't be able to fully enjoy the event because we have to watch her, keep track of her, deal with her screaming if somethign upsets her or we have to walk away from an activity she enjoys, etc. I can't remember the last time we ate in a resturant other then McDonald's as a family, because of her. I have a 22 month old who behaviorally and in some ways, comprehension wise, is ahead of her. I get a lot of help with her- but I want to do things as a family. I don't want to leave her behind or accept an activity full of tantruming.
Then I get to deal with the guilt of wondering if something I did caused it (after all, I'm the one who carried her for 9 months), of being unable to afford to give her fully the therapy that I believe has the best chance of leading to recovery for her, of having to hear all the advice (is she on a special diet? Is she doing biomedical? You realize if you just... Have you tried....). I do not have the energy or ability or whatever you want to call it to step up to the plate, to be one of these parents who I read about who research everything and devote hours and hours to their child's therapy themselves. I have a hard enough time meeting her basic needs. I hate being asked to be a volunteer in every organization I accept any help from (It's only a few hours...well, yes, but those few hours add up from here and there and what about my other children? my husband? me?). I do not want to be an autism advocate. I do not want to work with autistic children. It is a field I never, ever would have even considered stepping into and as selfish as it is, I don't have a burning desire to "help children with autism". I want my child normal, but if that is not goign to happen, I want this demon called autism in as small of a portion of my life as is possible.
I've thought of running away more then once, just living as a street bum rather then continuing to do this. I've also thought more then once about giving up my parental rights to her, of putting her up for adoption with a family who has the moral character and energy to deal with a child like her- because I don't. To even think about it creates a bone-searing guilt, what kind of monster must I be to think about giving up my only girl, my baby- and yet I can't help but think how normal this house would be if she wasn't around...
That being said, how to do you come to terms with something like this? How do you accept it? How do you pick up the pieces of a shattered life and create a new one? How can I create completely new hopes, dreams and goals for our family and for myself? People keep telling me to see the positive in this- I honestly do not believe there is any positive in this. How can there be? Do you ever really accept autism? My daughter, my baby, who I am supposed to give my life to protect- and I can't even give her what she needs. It's not like she's deaf, or blind, or has a heart condition. Autism changes who she is, how she relates to us on all levels, how she communicates, how she percieves us and the world around her, how she is to live with. Unless she recovers (which I do believe in, but have doubts for with her in part because of our inability to get her the intensive therapy she needs at the hours she needs) I will never know her non-autistic self this side of life.
My daughter's autism has revealed things about me- my lack of faith, my selfishness, my lack of patience- that I am not proud of and I do not like. But it also seems to have drained the..psychic, for lack of a better word...energy I need to fix those things. Maybe the self-revelation is the positive side of autism, I don't know.
I don't really know how to end a post like this, but I would desperately like to hear other parents' thoughts on acceptance, on coming to terms.
Please forgive me for putting my "doctor" hat on (I'm a family doc) as opposed to answering your questions as a "parent". Instead of me answering your questions, I think many of these posts hold wonderful answers and comments, I want to tell you a concern. I am concerned that you may be suffering from major depression, or something similar. At the very least, you are experiencing an extended grief reaction. Although your feelings and questions are not uncommon under these circumstances, I've dealt with enough people over the years to notice some possible warning signs. Please talk to your doctors about these feelings. Be as specific as possible so they can help you more. And please forgive me if I have offended you...I sincerely have only the best of intentions.There is NO preparation for living with an Autistic child. Dorian is considered high functioning - ha ha ha. He is in regular class with an aide and making decent grades. Yet cannot remember to change his underwear. He lies and steals (food, candy, toys) ALL the time, hides candy papers ALL over the house, picks himself until he bleeds, and pulls his hair out. I think he might have a permanent bald spot. And he has really loud tics. There is NO help. We have changed the medicine lots of times. I feel trapped. I get 10 hours of respite care a month and thats it. Our babysitter is quitting on us because our "high functioning" child requires too much care. At 13 he is too old for daycare. At 6', one person told me she was afraid of him. We have to watch him at the store - no he isn't screaming - he's looking for an opportunity to steal. I at the point where church is almost impossible to attend. Last Sunday, my husband and I took turns going so one of use could stay at home. So where is God?? It's ok to question God and to be angry.
You are not alone. Some days are really bad. How do you enjoy a child that sticks things in his rectum and leave them hidden in his room? How do you laugh when you find the empty jelly jar hidden in a shoe box in the closet, bread hidden between books, candy under the bed. In reality - grades do not matter, if you can not act somewhat normal.
Do not beat yourself up. My son is adopted and I've contacted the adoption agency about getting funding for a group home. Taking care of him requires so much that I can't find the 'good' words to encourage him anymore. I think he deserves to live somewhere else where he can find the nurturing that he needs inspite of his behavior. I'm worn out.
GTTO, you outdid yourself explaining autism. First of all, I'm an Aspie (Aspergers--high functioning autism). My son, whom we adopted, has PDD-NOS and reading and learning about PDD-NOS made me realize my life had been confusing, largely a failure, frustrating and that I was "odd" because I was on the Spectrum, but I think that had I been a kid now, with parents making appropriate plans, I think my life would have been great. I can do things others CAN'T do--I have almost savant writing skills, when it comes to novels. My brother is an Aspie with an IQ off the wall and he is a math genuis. I don't think he's unhappy in his life, although he's never had a date and has had few friends. What makes YOU happy isn't necessarily going to make your child happy, but if you're unhappy with her, she will know it. My parents HATED me. They called me "bad" and my mom recently died and had disinherited me, but no surprise--she hadn't spoken to me for ten years because I'm "bad." She didn't even care about my kids. Your daughter will improve. I did and that was without any help at all. My son that we knowingly adopted in spite of having delays, is doing great. He was a very high maintenance toddler, prone to rages and self-abuse. At 13, he is the happiest kid I ever raised. He has great speech and the school tells me he participates in class, has some friends, and has come soooooooo far. I don't even think anyone at the school believes he is on the spectrum. If I had had the attitude that "why did we adopt this kid? What a drag on the family, etc." I don't think he would have improved so much. I'm not saying that you have no right to your feelings. You do. But you are seeing only blackness and no progress. Progress will happen and your child will be sooooooo happy if you embrace her and help her on her journey. You can't know how far your child can go. I never dreamed my son would function this well. He is such an easy kid. We never have to vary our routines for him. We can do anything that any other family does, and he is better behaved than my NT daughter! He has older sibs who adore him and want to look after him when we are gone (be his guardian--I think he'll need some help, but not so much that he can't do many things for himself). Have your time to grieve, but please, for your child's sake, jump back on board and tell yourself, "I can do this" and then find out the various interventions available for your child. The county and school district has to do them FOR FREE. My son never had paid therapies of any sort. He started out a foster child and had Infant "At Risk" Interventions, including "speech" as an infant!!!! Yes, they teach infants how to use their tongues and lips. Then he graduated to the county "Early Intervention Program" and went four days a week for various FREE therapies (OT, PT, social skills, Speech). They REALLY helped him and cost us not a dime. At three he entered Early Childhood Education and went to school every school day, even in the summer, and his progress leaped. There is much you can do. Once my boy broke into speech, he never raged again. Ever. That may not be the way it goes for your child, BUT IT CAN. What's the positive? My child is, out of five kids I have, the sweetest, happiest, most contented, and biggest joy of my life. I love all my kids, but Lucas is my hero. I'd be happy to talk to you, if you need an ear. PM me, if you want, and I can give you my number, if you have free long distance. My son's story is very positive, and I want you to feel positive for your child. Well, this is long (I'm VERY longwinded in real life too). But I hope it gives you something to look forward to. I get scared when I think of possibly have passed up the chance to adopt our son. (((Hugs))) and take care. Keep the Faith.I think 3 was the worst age for Zack,I remember sitting on the bathroom floor,sobbing after one of his many melt downs.
his father not willing or able to cope would storm out ,slamming the door ,somehow i got up put one foot in front of the other and went on for another day.
And you will to
I will pray for you ,God Bless ,Linda.
Im so sorry and were here for you
I have been there and on occasions I will revert back to feeling that way. I still have days where I feel angry with him, and I hate myself for it. But its only natural to not want to "accept" this. But let me tell you once you do it will get so much better. You will start to see the amazing things your child does, and what great things she does for your faimly.
In my son it took me so long to get past his "issues" and see the things that he does that make me so proud. He is so honest (well as much as a 3 year old is, my dd was already mastering the lying art by now). His expressions are so unique just to him and his way of doing things amuses me every day.
I know its so hard to plan or do anything knowing exactly what issues you will have while your out of the house. Im an odd person I guess because I do not let it stop me. I go to mcdonalds, the store, friends houses, ect. Just as I would if he wernt asd. He may break down and I may go crazy. But I guess I believe that If i just keep him home he may never learn how to deal with it all. If that makes sense. Plus i need to do what i need to do lol
Big hugs
(((HUGS))) I don't know the severity of your daughter, but I can tell you that at 3 yo my now almost 7 yo, who is mild PDD-NOS, was very taxing. Easily thrown into temper tantrums; difficult to reason with; couldn't commicate well;
Things are much better now. By five, his temper tantrums stopped; the better his speech/language got, the more able he was/is to listen and be reasoned with.
We can take him now out to eat most times with him staying still (I still pull out the hand held video games); we do go on vacation, but crowds don't bother him, so each child is going to be different in every situtation.
Hang in there, I still cry at times, but not as much as I used to. It's the uncertainty of the future that is so very scary, but you have to learn to deal with the now - that is easier said than done, but it is the truth.
Let me start off by saying, Most of us have been there. Why me, why my child. Our hopes our dreams crashed down. Will it ever get better? These are all normal. People accept it in their own time. I know for me I went into a deep depression at first and scorn God for what he had done to me and my little man. . My wife took him to all his Dr.s, therapist and more. I talked to my then living dad. I said I worry so much about him all the time . He told me even if he were NT; I would worry about him for the rest of his life. That I need to what I was meant to do. It’s funny but all of a sudden I went balls to the wall. I got all the help I could for him, did all the research. Tried many different things to help. I know about thinking, you will never be able to do family things again. That’s how I thought. But after years of therapy, help and working, I would tell you, it does get better. Just this past year we went on our first plane trip with him as a family. I too wish I could have more children . I just have Nick; we can’t afford more with day care and all. I always wanted to have 3 but the buss just didn’t stop at my bus stop. Now I can’t wait to see him all the time. He has taught me what it means to be a father in the truest form. It still has its hard times but with support and perseverance it isn’t the end. This site has helped me more than anything. Your daughter is still young so there is lots of hope for her future, as long as you get on board and fight through it. It’s funny how God tests us. He sometimes sends us a special angel to lead us the way.
Hang in there John This has been posted many times please read c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. Gtto. That was very well said. Your analogy was wonderfull. I have learned to live life with what I have. Sure it is a struggle sometimes, but you need to change you expectations. There are many places we can't go, and we are all used to having to leave places early because Adam can only handle so much stimulation. There are times when only I or his dad do things with his brothers, take two cars etc. We have all come to accept this as part of life. We also try and make some things positive. Like when we got a disabled pass for Six Flags this year and none of the kids had to wait in line for the rides. They boys told me that this was the first time Adam's autism was a good thing for them. Adam is Adam, and he won't be different. We are all used to him and have adapted. The one thing is that his brothers are younger than him and they don't know anything else. This is the way our family has always been. Different than their friends, but I tell them everyone is not the same. I now enjoy the life I have been given. I will prayer for you that you will be able to do the same. WOW!! Gtto, you said it all.
For you XYlina12 I say this, you don't have to accept today or tomorrow. You don't necessarily have to accept "Autism" but you do have to accept your wonderful daughter and the truly original and unique teacher she is and will be. I say teacher because I have found in my short time in dealing with my son's Autism, it has taught me so many things that in other circumstances I would not have even noticed. It has taught me patience, selflessness, how to look at something and really "see" it not just past it. I have learned that the grass is a really soft place to lay in, water is a great thing to play with and a huge stress reliever, sitting on the floor and flapping with my son actually feels good. sometimes love can be expressed even more greater without words. Trees and flowers are our friends and sometimes they need hugs too. They sky looks better when you're lying down looking up, green is a great color, playdoh feels good when you hold it up to your face and smells terrific. swinging and jumping up and down on the bed is fun. I probably don't speak for alot of parents but My son is teaching me alot about the world I live in that I have taken for granted. And looking at the big picture, all of the money in the world could not possibly bring me the happiness that I have found in just "being" with my child. It wasn't always this way with me but it is now. My son is teaching me the joys of parenting. And I will also say this, Remember don't look so much at your child for what they "can't" do but for what they "can" do. Get down on the floor with your daughter and "be" her. you will learn how she thinks and what a great relationship you will develop if you stop focusing on yourself and start focusing on what she's feeling. It works and it only gets better from there.
The thing is, you don't have to accept autism. IT HAS ACCEPTED YOU. You and your family have no choice but to live with it. Will it make your life narrower? Yes. Will it change your dreams for your kids and yourself? Yes. Will it be difficult on every, single family member? Yes. Over the 15 years since my son's birth, my life has gotten narrower and narrower and narrower in some ways. In other ways, whole new worlds have been opened up to me. I have learned things I NEVER thought I would learn -- or needed to learn. And not just about autism or law or whatever, but about MYSELF. My life is a different life than I expected. My marriage is a different marriage than I expected. What I have to deal with on a daily basis no one but other parents of autistic kids could POSSIBLY understand. No matter how much I scream or curse or pray, autism has got its grips into my family and it's not going away. So I've made my peace with it. I try to do as much for my son as I can. Long, long ago I dumped any guilt I felt because I know there is not a single thing to feel guilty about. I didn't do anything to cause autism. I didn't ask for it. No one in my family asked for it. But none of us can make it go away for even one single minute. Not unless we decide to give up our son. It's a possibility. You or I or anyone here would not be the first parent to say, "He'll be better off where someone else can take care of him" (or her in your case). You will do what you HAVE to do to survive. My husband and I do what we call "tag-team parenting." Each of us takes a turn with our son. (no, we don't keep score). If we go to an event, one of us gets to wander around and enjoy the event while the other keeps a hawk eye on our son. My husband gets nights out with the guys, I get nights out with the girls. No, we don't have much time TOGETHER. And we have ONLY ONE CHILD. That was a consious choice on our part because we didn't think either one of us could do right by this one child if we had more. That is TOTALLY personal, but many people DO make that choice. If you honestly feel that raising your daughter is ruining life for the rest of the family, you might want to take the step to look into residential care for your daughter. It's one thing to sacrifice your own future, but if you think raising her at home is also sacrificing your other children's childhood and future, residential care might be a possiblity. There is only ONE thing you'll never be able to get, even if and when your daughter moves out, and that is a life completely without autism. Autism is here to stay. Thanks everyone for your responses. I am technically diagnosed bipolar, and I am on Zoloft and Seroquil. I suspect the diagnosis is incorrect because my only manic phases have came on when they tried me on new meds and none of the mood stabilizers helped. Now of course, I can't be on any because none are considered safe for pregnancy. But this combo does seem to be helping. I also got a dog, which as stupid as it sounds, is helping. Something other then autism, then the house to do, to focus on. This has been a rough year- extended unemployment last winter for my DH, I lost a baby back in March and had an extended recovery time from that, my son was hospitalized with rotavirus...that isn't near everything but there has been a lot going on other then my daughter's diagnosis. I don't think I've discussed how much this issue bothers me with my psych because I've had a horrible fear of actually speaking it to someone- like they'll take her away or think of me as a horrible parent or decide that we can't have home therapists for her or whatever. My daughter is considered high functioning. Our main problem is tantruming and screaming. She is very interactive with us, and other then a tendency to strangle (i.e. hug) the cat and an occasional swipe at her younger brother, she isn't that bad, and I know it. But the constant low-level noise feels like torture to me. I think I'm extremely sensitive to noise in general. But you know, she actually behaved better before her diagnosis and I'm realizing it's because our expectations of her were the same as that of our other children. We have been told any negative consequences for behavior are wrong, that we should just ignore her if she's being bad, that there is only so much we can expect of her behaviorally if she's autistic. I agree there is limits, but I also think she can learn that she does not get to sit down and scream if she is tired of holding our hand. She has about 100 words that she has shown consistant use and comprehension of, she often uses 2-3 word phrases, she can understand them well enough to give a response a lot of the time (even if that response is "No I won't!) she can follow 1 step instructions, I think it is reasonable of her to learn the word "no" and I don't think that has anything to do with my issues with her diagnosis. I think I'm just finally getting fed up enough to tell the "experts" that. GTTO and Pammar, I really appreciate your insight. You know what is funny is I grew up around disability. When I was 10, my mother was diagnosed with primary pulmonary hypertension and was told by several doctors she had about a 2 year life expectancy (at the time survival rate for the illness was about 2-4 years- everyone she corresponded with when she got diagnosed is now dead). My father was never in good health, as well as being an alcoholic. My mom, btw, is still around and quite well. She lives with us. But she has fibro, rhumatoid arthritis, type 2 diabetes from the steroid treatment she was on at the beginning of her illness, sleep apnea, and a few other issues. I remember praying that they would find she couldn't hear because THAT is physical, and THAT I could deal with- we learn sign language, we make some adaptations- I could deal with that. I know my daughter needs me to appreciate and love her for who she is. It really makes me hate myself that I have such a problem with this. Why? I'm not fond of the answers I come up with either- that it's my pride in my children that is affected by her behavior and appearance, that I am seen as flawed somehow because I produced a less then perfect child (as if any of the others are perfect-lol!), that it is my inconvience and my plans that I can't stand to have altered. But I also think it is the helplessness I feel in the face of something like this. Despite all the reading and talking to parents I have done, autism seems more like a stranger every day- its manifestations continue to puzzle me, the strangeness of it. Three is puzzling enough without autism. I feel helpless that my daughter is insured and yet there are so many limits on what I can get for her. I feel helpless that the accident of her location of birth affects the services available for her, and it's not in our power to move. My best is not enough in the face of this. xylina12-- I can't believe you wrote that!!! You are me!!! I cried reading your post. I think we're in a grieving stage and can't seem to shake it. I cry everyday especially when Logan is acting "differently". I feel very overwhelmed and helpless at times. I feel like my other kids are cast to the side which just adds to my depression. I took all my kids to a huge mall (an hour away) as a treat yesterday (no school) and it was a nightmare. Logan just screamed (he is so loud), kicked, scratched, threw himself to the ground etc. My other two kids were annoyed, tried to help, but made things worse. People were staring, making comments etc. After about 30 mins, we left. I literally cried all the way home... same thing, why is this happening to my poor son, our family etc. I feel like we can't go anywhere as a family. Logan is pretty good when he is with just me, but if I have my other children with me, it's terrible. My husband is always telling me to appreciate him the way he is and I try, but I feel I can't get past it. I was just telling myself today, that I need to stop dwelling and be strong for my child. I hope all that comes in time. We just got a dx last week, but knew for awhile that something was "off". Please know there is other people out there that feel the same way you do. I am going to try to find a support group in my area, maybe that would help you too. (Also, I think you mentioned you are pregnant... I'm sure the hormones aren't helping your situation either.) A big hug to you!! I agree 3 may have been the worst for Nicky. And Tzoyz, I too thought of sensory issues OK...let's all think of three to five things we are thankful for when it comes to autism. Maybe this will put a different spin on thinking about it MY LIST I am thankful for autism because it's made me a much, much, much more accepting person. I am thankful for autism because, without it, I wouldn't have my dear son. I am thankful for autism because it has made me appreciate what I HAVE much more than before. I am thankful for autism because it has challenged me in every single way and helped me become a fuller person. I am thankful for autism because it makes me appreciate my husband's love for me and also for my son every, single day. Have you tried ABA therapy? I hate to be one of those people who ask "have you tried this and that" etc, but it really did help us. At 2 yrs old I couldn't take Emily anywhere! Me & my hubby would literally take turns leaving the house so someone was home with Emily! lol I felt like she controlled my every move, and she was only 2! She would tandrum if she didn't have her way. I mean if she wanted chips and we ran out she would lay on the floor and carry on forever! Or if we got in the car and she had it in her mind we were going to McDonalds she would scream and scream if we didn't. Now, if we don't have chips she makes suggestions on something else she could have, like crackers! And I can get in the car and she doesn't insist on going somewhere specific. I never thought she would get to this point! ABA really helped us. I can now take Emily almost anywhere. We go to Target alot. But I always go knowing we may walk in and have to walk right out. Once I accepted that it got a bit easier. She is our only child too and I am betting that makes it easier. I also set limits, I know going in the store even if she's being really good that realistically I only have about 20 minutes and then she will start to get overstimulated....so I leave before we get to that point. ABA is quite expensive therapy, at least where we are but I am lucky my insurance pays for 25 hours per month. I know there's alot of books out there on it too. For us, once the therapist showed me how to handle Emily and her behavior we just did tons and tons of practice at home, so you do alot of the therapy yourself. Anyway, just a thought, might be something to check into. Emily has a very dominant personality and it was very difficult to get control of her but once I did things have definantly gotten better. I still have rotten days where I just want to run away from it all and she has tandrums and such, so it's not always perfect!!!!! I have to tell myself she is still only 3 and alot of that is typical behavior, I've seen the neighbor girl (who's 3 too) have tandrums and she's very typical!! lol But we have many many special days where I know I would just die if I ever left or lost this little girl! She truly is the reason why I get up every morning, just to see her little smile! It took me almost a full year to get to this point though, so be easy on yourself. Again, she is our only child and I know this makes it much easier than if we had other children. Vent away, sometimes it helps me tons just to get it out. I just want to say to XYlina12, and to all the parents that have been so candid about their feelings: Thank you. By sharing your feelings, you may have helped another parent that feels alone and helpless, not to mention hopeless. My son has Asperger's and is the oldest of my 4 children. We knew something was up with him as early as 20 months. He didn't get a formal dx until he was about 6 yrs old, but we had already, thankfully, received early intervention and all the therapy he needed. Age three was REALLY tough...LOTS of tantruming....wow did he have some stamina or what? LOL! I want you to know that you are not alone in your feelings or your experiences. You came to the right place! Also, I have suffered from SEVERE depression since I was very very young, but didn't get diagnosed or have treatment until I was in my 20's! I did fine for a few months? but then the medicine stopped working...tried another medicine and that worked for a couple of years....then that stopped working....right now? I'm stable, I take medication EVERYDAY. If I don't, I CAN"T cope at all. Even though I did get all the services and a good i.e.p. for my son, who is now 10, I spent the last 4 years not accepting the dx, and even sometimes resenting him, being embarrassed by him, and a lot of the time being broken-hearted because the dreams/plans I had for him as a baby were shattered. You know what? it was pure grief, it was as if someone had died. Sounds dramatic? but that's how I felt. I could really kick myself for not enjoying my son more. that's four years wasted. I used to say the same things you're saying, about not wanting to be an advocate, about being tired of listening to everyones advice and stuff...Its incredibly overwhelming, especially when you are pregnant or depressed or BOTH! Not only that, but dang! makes you feel like a crappy parent when you see all the stuff everyone else does for their kids...Services and therapy? Where to begin? I.E.P.'s and insurance issues, whether to medicate or not...SO many choices, and we're so afraid we're gonna make the wrong ones! I took a good look at myself about 3 months ago...and realized part of my depression was caused by grief. And that without acceptance? The grief would continue...I would go on resenting, feeling guilty, etc. I joined a support group. I joined the Autism Society of Delaware an ASA chapter. I joined this message board. I've attended fundraisers for Autism and imersed myself in making sure my son is good-to-go when it comes time to transition to middle school. All this from someone who didn't accept the dx, in fact I ran AWAY from it. Acceptance will SET YOU FREE! Stop holding yourself back!! YOU CAN DO IT!!! Take care of yourself, reach out, join in! I will pray for you, please get the help that you need, You DESERVE it! *hugs* P.S. I think I have sensory issues too, because when it gets loud at my house I just want to clap my hands over my ears and scream SHUT UP!!!! lol!
You don't have to "lower your standards" for Gianna. But the autistic brain processes information differently, so you have to approach her behavior differently. Also, autism of any kind is a developmental delay. That means the autistic brain's development takes longer to accomplish than the normal brain's development. This results in delayed maturity. Someone once told me that we should cut an ASD child's age in half and that will be an approximation of that child's "maturity age." We can expect behavior from that ASD child is what we would expect of a child maturity age. For example, since Gianna is 3, you can expect from her about what you can expect from your younger son. You must use positive behavior intervention techniques because the autistic brain responds better to positive intervention than negative intervention. NT kids do, too, but they can tolerate and learn from negative intervention -- kids with autism cannot. Notice, I said "cannot," not "will not." Our kids brains are simply different and PROCESS input differently. Let me give you an analogy. The goal is to have child A and child B each read War and Peace. Child A has 20/20 vision. You teach Child A to read by using the usual reading techniques and, by 16, that child can read War and Peace. You teach Child B to read using these same techniques, ignoring the fact that Child B is totally blind. Is it any wonder then, that at age 16 Child B STILL cannot read War and Peace? Instead, you would teach Child B to read using Braille. Then, at age 16 (or maybe 18 or 20), you would get a Braille version of War and Peace and Child B would be able to read it. Autism is not different. We want to try to keep the EXPECTATIONS the same as much as feasible, but HOW to help the child MEET those expectations will be very different for an ASD child than a NT child. It will help you and your ASD child and your whole family to understand WHAT to expect and learn the special techniques you'll need to learn to GET your child to MEET those expectations. Dear xylina12, I have two children with high functioning autism. They are both different and reacted differently to everything! My daughter showed signs of artistic ability (she shows the greater autism) and my son showed skill at figuring things out like sorting things and putting things in order. For my daughter I had to be very careful to stay out of her space. If she was drawing and I came over she would become tense and want me to go away. If she was stacking the clothesbaskets into a pile and I stopped her she would get soooooo mad! So my first lesson was to pick my battles. Just let her do it! If its bedtime or we need to be doing something else then I had to distract her just like you would do to a baby. Then I’d take it down when she wouldn’t notice. I'd reach her through pictures on the fridge, boxes with things inside anything I could think of! It was fun too....I would try to think what would be exciting and what would I learn from this or that if I was a little girl? WHO CARES WHAT OTHER PEOPLE THINK of your messy house, of your child covered in paint who wants to wear a tiara all the time, of serving dinner in ice cube trays, of giving her all your pots and pans and wooden spoons, of letting her take 3 baths a day because she likes it. The more you show her how much you love her and dont mind the things she does, While slowly carefully guiding her and looking for new creative ways to reach her, the happier and better off you both will be. My daughter is 8 now and loves Bratz and Hillary Duff and to be in fashion. She has a hamster, posters on her wall and a fake cell phone (although she could use a real one!) She is in fourth grade but is academically at a 1st grade level. The school just knows how important it is for her to be with kids her own age socially. She still gets nervous when I go into her room or look over her shoulder, but she is more accepting of ME. She knows that whatever she wants and needs I provide and I can teach. And she knows I won’t pressure or invade on her sensibilities. Its not hard work to try to understand wants and needs and decide whether is safe, sensible and worth it to provide them. It actually makes you feel young and silly. And when you connect because your both sitting there ripping up a newspaper and laughing to make ...well, a mess... it really is worth it. First of all, it's not enough for your counselors to tell you that your feelings are normal and you should talk to some other parents in the same situation. It's not enough to know that your feelings are "normal." Your feelings and life situation hit you with 100% of their force, regardless of how common or uncommon they may be. After my son's diagnosis, I spent a year going through the motions and feeling emotionally drained. I needed to talk, yet felt that no one had time to listen, no one with "normal" children was in the position to understand me, and I didn't have time for tears, so why force the conversation? It really helped to go to a class/support group, but it wasn't just the contact with other parents that helped, it was the life-coaching and empowering aspect of the class and the wisdom of the moderator. I sense that you are worn-out by your life situation, and that practical help would free up some of your energy to deal with the emotional struggles you're undergoing. Here are some sources of practical help: http://www.stopthatbehavior.com/pdf/r_family_needs_sruvey.pd f - a checklist to help you identify your family's needs relative to dealing with a child disability. http://www.autism-pdd.net/forum/forum_posts.asp?TID=14189&am p;KW=respite - a topic on our forum with links for locating respite care. Respite is not a selfish move. It can be the source of a fun activity for your autistic child and a way to promote her independence, and also something necessary for giving your other children what they need. http://www.autism-pdd.net/forum/forum_posts.asp?TID=17134&am p;KW=meltdown+resources - a topic on our forum with links for helping cope with meltdowns. These links have been life-changing for a few moms I've gotten feedback from. http://www.sensory-processing-disorder.com/sensory-processin g-disorder-checklist.html - checklist for sensory issues in both you and your daughter. Identifying my son's sensory issues and learning to work around them has been key to a better life for us. Good luck with everything. I'll be thinking of you. wow. this is a great thread. Thank you for starting it! Your honesty and ability to put it out there so clearly has blessed me. I think all of us have felt the things you describe at one time or another, or currently. I have this feeling you are going to be just fine since you can get it 'out' there so effectively.
I am in a rush (my little one is babbling in her bed at the moment) but I wanted to share with you that diet, supplemetns, etc have helped my daughter AMAZINGLY to become a person we can live with. No more tantrums, no more screaming and screeching, acting like a typical just-turned-4 year old (behaviorally) There was a time I couldn't take her to the store anymore. Now she goes all the time and is better behaved than most typical children. (even better, maybe since she hasn't learned to ask for something in every aisle yet
Anyway, PM me if you are interested. You *will* get through this. Each year will be easier than the last. God bless your every day, and thank you for posting. Oh thank you! Thank you for your honesty! I am in the same place as you right now. I want my life before autism back. I want my other children including a newborn to get the attention THEY need and deserve.
Autism is like a cancer,all consuming,eating away at my entire family day by day.
Autism is a word for a part of your daughter, that you didn't plan for,
and in fact built an entire set of plans around the absence of.
When you build an entire set of plans around the absence of something,
then it's really easy to blame that something for the distress you feel
when you can't do what you think is normal and planned. Even if
that something just exists, it just is, it's not a monster that
came into your life and ruined it, it's an aspect of life you didn't
plan for.
If you go out in the winter in shorts and a t-shirt and get frostbite,
it would be understandable to get mad at the snow and cold weather, but
not rational. Snow and cold weather just exist. They are
not bad or good, they just exist. They can even, in the right
circumstances, be fun for things like sledding, skiing, and snowball
fights. But not if you persistently make all your plans around
going to the beach and sunbathing in a bikini.
Autism is like cold weather and snow. It's not bad, it's not
good, it's a neutral attribute of the world (or of a person) that has
parts that become bad and good in different environments and with
different expectations and knowledge. What you've done thus far
is like assuming that it's going to be summer year around. Making
all kinds of grand plans for sunbathing, trips to the beach, swimming,
waterslides, etc. And then getting sick and injured over and over
from exposure to the cold, yet continuing your expectation that life
should just hand you summer all year round, and getting angrier
and angrier every time this horrible thing called "winter" comes along
and ruins your wonderful plans. Meanwhile, not being able to
learn anything good you can do in the winter, because you're too
focused on making it summer through sheer force of will.
So, basically, probably understandable given the way most people plan
these days. But not rational. In the past (and still, in
many places), childhood was not expected to be a fun and carefree
time. Child mortality was a normal part of life and people had
lots of children to deal with it. Many children had to raise
their siblings after their parents died, and this was not considered
"losing their childhood". People didn't have the luxury of making
plans for a perfect life set to all of their specifications, because
they knew that certain things were likely to happen in their (and their
children's) lives, things far worse than autism could ever be.
Because that was a normal part of life, people were not as horribly
affected by it. Life was considered to be a hard thing, not
something that was supposed to be handed to you, and the "ideals" of
various developmental stages did not exist.
This is not to say everything was great, only to say that people used
to be more prepared for, and thus more resilient around, things
not being all be great.
I think there are certain aspects of modern life that make people more
likely to plan a certain kind of life, and imagine that certain
developmental stages (including childhood, also including raising
children) are supposed to go in a prescribed way or else shouldn't be
there at all. And I think these predispose people to be a lot
more miserable in the face of a lot less hardship.
Nowwhat
I am thankful for autism because it's made me much, much, much more patient.
"good" in the store. I think that tactic works, too, but I decided I wanted to use McD's to help him understand, right off the bat, that shopping could be fun. I then put him in the cart and we zoomed around the store just looking at things. He wouldn't let me turn the cart right or left. We HAD to go in a straight line. To this day (about 12 years later), I have no idea why. Clearly, I got no real shopping done. These excursions was to get him to think shopping was at least an acceptable activity and to desensitize him to any negative sensory stimulation in the store. I worked. It didn't take too long for him to WANT to go to Walmart's. I NEVER bought him anything there, so we never had and "gimme" tantrums. We just looked. I couldn't do this in the supermarket because, for some reason, the supermarket was genuinely painful for him. It took until adolescence for me to take him back to the supermarket. He's fine with it now.
Agree here with Tzoya. For years my ex was thought to be schizo affective when he really was on the spectrum. No one knew very much about autism, even a few years ago when he was in the crisis center, to even consider it. But after our sons were diagnosed, all of the sudden his aunt, a pedi, had said that looking back, there were definite signs in him, and another aunt, who is a teacher, agreed. In fact, it was even when he was a kid and his pedi aunt was in medical school did she voice her concern about my ex having autism. But from a young age, he was "diagnosed" by the schools as having "learning disabilities" (his mother says, who is also a teacher) to a developmental disability, to being schizophrenic at the age of 19 to schizo-affective when he was in his early 30's. I always thought the schizo-affective was way off, he never showed many of those features, but his eye contact lacked, he had no empathy, didn't like to be touched, didn't "get it" and so many other things...that there is no doubt in my mind that he is on the spectrum.
Please see someone about this possibility for yourself. I am sorry you are having to deal with this, either way, it isn't easy.
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