I expect that this question will bring about mixed answers. However, I wanted to try and see what your personal experience is on this subject.
Do you find that your family and friends are supportive? If so, how are they supportive? If not, why do you feel they aren’t.
Do think that it comes down to good intentions but a lack of understanding? Is it an unwillingness to learn?
I would really appreciate your feedback on this. You certainly don’t need name names. However, by openly discussing this, not only do you find others in a similar boat hut also help those well intentioned people to better understand. 🙂
This was posted via WordPress for Android, courtesy of Samsungs Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.
umm well, umm., father took off when I was 4 mother took off when I was 5, grandparents almost gave me to the orphanage, (my younger sister and brother they were sure of but , I was for my grandmother ‘of uncertain parentage.) Not an autism related thing but maybe it’s nice to know that it’s not only autism that causes families be be stressed.
Wow–what a loaded question! My family will not associate at all with us due to the tales my mother tells about my children and me. I am on the spectrum as is my mom, her mother and all of my great aunts and uncles. They are all scientists, engineers, professors, and teachers. My mom lives with one of my brothers about 100 miles away. My dad died many years ago and he was the translator for my mom–he kept her from offending others and them from misunderstanding what her intentions were from her words. I have only brothers and they want nothing to do with my children and me because we don't behave in ways understandable to them. My family is very co-dependent and passive aggressive; my children and I basically are not. So we don't mix well with them. My ex's family has no contact with us at all. My ex is not allowed to have contact. So we really have no family support. Our support comes in the form of therapists and other mental health support personnel and online friends. The few friends I have left are consumed by the disarray of their own children on the spectrum. Friends I went to college and grad school with have mostly stopped communicating.
I am so sorry to hear that I am in the process of my husband now understanding why I am who I am instead always apologizing to him or others. I can totally relate my son has Autism and I try to tell him to be more patient with him only he knows what he deals with but my poor kiddo is trying. I have to drag my family to do anything Autism related and they swear up and down I am bipolar cause I do not tolerate their passivness. I hope things get better for you.
@hudginsvicky It's your gain and the family's loss that they are missing out on such a great kid!
it is a mixed bag here. I just have my mom in the state where i live. She helps out alot, but due to her own issues, can become quite moody/irritable and then we don't see her for some time. I have one brother who cannot relate to my situation and so really cannot be of much support. I definitely need more support. The support comes from other moms here with kids with ASD. They are my best support, but like me, they are busy trying to manage everything, so i cannot count on them all the time.
My daughter (Olivia) was born deaf. She had bi-lateral cochlear implants during infancy & her AS was not diagnosed for years afterwards because a lot of the signs were waved off as contingent with the processing & receptive factors of learning to listen, hear, & speak with an electronic device. Before her AS diagnosis, my family was proud to talk about her & thought every little feat was an amazing leap & bound for her…and in a sense, they all were! Cochlear Implants are NOT a quick fix. They are an aiding device where you must put your mind & body into it every single day. Everything is a continued learning experience with them & Olivia does become tired & irritable but NOT to the extent that she was getting. Screaming fits that lasted for hours, only being able to wind down & go to sleep when the devices were removed so that she had "down time" as we call it in our home. My family really called DHS on me because I removed her "ears" (the processors) to put her to bed & they said it was abuse…when they know nothing about CI's, AS, or ADHD factors! I had to explain to the state that the only way Olivia would be able to wind down enough to get her body into a state of relaxation & rest was to give her a way to rest: by taking away all the noise, all the talk, all the tiny little sounds that she was hearing that could trigger a fit or as I call them her "rages." Time out was not an option, she didn't understand the concept of staying in ONE spot or why she HAD to stay there so she would scream for hours, sometimes kicking & screaming into the early morning hours. I was a single mother then (until May of this year), with an infant, a job, & school, & I was STRESSED & tired. Anything could trigger her, my family would say she just needed a darn good spanking but would refuse to accept the fact that spankings triggered her anxiety & panicking & would only escalate her behavior because she was focusing on the anxiety of pain or being hurt, not on what I was trying to teach her. My worst part is, my family THINKS they are schooled & have knowledge in ALL OF THE ABOVE just because they have a family member diagnosed with it. They talk to others like they are experts in it or share parts of Olivia's story that they have been told. They don't see the day-to-day stuff that I see, that I experience, yet they want to tell me how to discipline & teach her & raise her. Walking on egg shells, trying to prevent a meltdown while on the phone with a Doctor's office, making sure that she has the exact same amount of grapes as her "normal" sister, & trying to convince her that people aren't staring at her or whispering about her is my day-to-day reality with her. What angers me is my family never is interested in hearing about that stuff because they are so busy trying to FIX it or tell me how to react to it! They aren't there to see it, but they want to brag & claim all her triumphs! Everything with my daughter is about RESPONSE, not REACTION. It's frustrating because since I can't trust them to follow my rules with her, (& they live so far away thank goodness!) that I haven't had a day/night off in years. Until I recently got married to a wonderful man, I was doing this all alone. I love that they rejoice in her triumphs but I hate that they don't want or try to be a part of the leaps & bounds to get to those triumphs! Anyways, I didn't mean for this to be so long!
@j12mc , my daughter, Tess, who just turned 18 yesterday, also has hearing impairment. Fortunately, she has been wearing hearing aides since age 4, but we still struggle with some of the behavior issues brought on from the frustration before she could hear well and then the frustration of dealing with the aides. And I'm sure, although she has no diagnosis, that she is on the autism spectrum. I know that kids with hearing impairment, especially girls, are often not diagnosed properly or at a much later time than they should be. I'm so sorry you are dealing with this, but I'm glad you now have some support.
i say YES i have a supportive family BUT….. not everyone has the proper perspective or tools to handle a special needs child. Some people who do not see us much tend to baby him like he is delayed but mostly because they have no idea how to act, it isnt their fault, they are just uneducated. Most members treat him like any other child, with no exceptions, which is great but also bad. often something simple may disrupt him and the delicate balance is broken but at the same time being treated as "just another kid" is great at times too. Some of our biggest struggle with family is when they forget routine is super important, when a row of toys is moved, or when someone else leaves "germs" on something. my son can get upset when things become disrupted and my son's germ-phobia can cause anxiety if someone touches his food or doesnt follow "proper" bath-rooming or hand-washing procedures. Then following a simple disruption grows when family members ignore small anxieties thinking they are nothing and they build to big anxieties, when a simple coaxing, pep talk and one on one time can reassure and calm the child.in the end they mean well. they just havent learned the little things.
Our family really tries. In that way, they are tremendously supportive. But they aren't equipped to do a lot of the supporting we really need, like looking after her so we can get a break. My brother loves her dearly, but gets very frustrated with her, and my dad just flat out admits that he can't keep up with her.
Handpicked friends in similar situations are incredibly supportive–family, not so much. They mostly think I am weird to have adopted kids with issues, after I had "the perfect family" already. Can't change their collective minds, so I just don't share much with the uninterested folks. They really have NO idea about raising kids with extra requirements, and it just works better that way. Could never have made it as a single parent without the support of my friends.I love my family, but I depend on my friends."
Thank you for sharing that. Hang in there. We're all here for you 🙂
@hudginsvicky amen to that. 🙂
Wow, this actually makes me rather sad that so many dont have supportive familys. My family is very supportive of my son and what we are doing to help him. They may not agree with all the choices we make (living in a little town in the middle of nowhere because it has AMAZING schools), but they don't tend to voice those opinions more than once. The only thing I can really say is a problem is that my parents aren't sure they are ready to deal with my son overnight without us and we REALLY need a break.
@MeganCKitchen That's a very unfortunate truth. So many families go it alone because family and friends simply don't understand.
My family is very supportive, but sometimes what is done out of good intentions can be damaging to my daughter.
She needs to have a routine and a set of certain rules on the daily basis that helps her to accomplish unwanted task without a unnecessary stress. And when it is bent or changed, especially as far as "homework first and then play" rule, it is a hard work for us to get her back into the right routine. It becomes where she has to be forced into doing the homework and causes too much stress on her. They are willing to learn, but it is just too much! Besides having one "normal" kid and another one on the spectrum, it gets even more complicated as the rules are different for both of them.
I know my parents are really supportive and I am super lucky to have them near, but even they are needed to be given specific instructions.
And we don't really have too many friends as we couldn't really socialize(tantrums were a normal thing and exhausting for everyone) with anyone when my daughter was little, so it is just us, family.
In general, majority of outside people that I've met so far are really understanding, but not all. Just last week, I took my daughter to her eye doctor for an appointment. The nurse that was dealing with her, hand entered her diagnosis into the computer right in front of us, but she sure didn't know who was she dealing with. She was getting really frustrated with my daughter that she could follow her simple instructions to follow her hand (but she wasn't saying with eyes only). I could tell that not my daughter, but that lady was about to drop down to the floor to scream and kick… I am just glad that I was there to help to re-interpret her unclear instructions to my daughter.
@kat13 That's a good point. Medical professionals need to be more autism aware. We've had very similar experiences in the past. Sometimes those that should know don't and those you wouldn't expect, do.
I can relate to all three of the posts below, both regarding myself and my son. I am almost 47 and don't have an "official" diagnosis, but I am sure that I would be diagnosed with aspergers now. In some ways, it's a relief to know that I'm not just "weird", but my family insists that I can't be AS because, as j12mc said, I'm not quiet enough, I'm too smart, I am too friendly, etc. What they don't seem to get is that I am friendly with people I DON'T know. But I can't develop real friendships, and I put people off because I open up way too much. And the picking and twirling hair–and pulling it out too–those have been part of my life since I was 8. Hiding in my room and reading, not wanting to be touched. . . . My mom still complains because I am her only daughter and I wasn't a "cuddly" baby or the little girl she expected. And when it comes to my son, my parents really don't understand! He has very high functioning autism, and I think that might make it harder for them. They insist that he just needs more discipline. My dad yells at him, trying to get him to pay attention, and my mom just says, "I can't talk to him. I don't know how to." And when my sister-in-law or my youngest brother are around, there is inevitably an argument because they defend Zeke and me to my parents. As much as I would love to live closer to my family, I have to say that in some ways it's much easier being 8 hours away. As far as other support, we get great support from the school system, but we don't really have friends, mostly because I can't make friends. We have a nice church, but no close relationships, and no one there really understands what it's like to deal with Zeke. And as he is moving into the teen group, it's even more difficult because no one wants to be a "buddy" for him at church.
@DeborahWigginSnyder That is really disappointing to hear that your own parents don't understand!
@DeborahWigginSnyder You don't know how many times I've said to my wife that I wish we lived really far away. in my mind it would justify the lack of involvement from my siblings.
What Stephanie has said is almost verbatim of what people say about my daughter. They aren't nasty or rude about it-that's the worst part!- that they actually think they are being supportive when they tell me she's just a brat & a good spanking would teach her! No. It escalates her behavior. No one believes my daughter as AS because she's not dumb enough, not quiet enough, not reclusive enough. They don't pay attention to the fact that she repeats herself over & over to exhaustion, or that she frantically picks & twirls her hair & scratches her head when in a situation that requires her to be social with her peers, or that she holes up in her room reading or painting for hours the same things over and over again. She skews up normal common-scensical thinking with something totally off to us but makes sense to her. It's very difficult to find someone that TRULY understands & even more difficult to find someone who is willing to stick around through all the drama. My younger daughter suffers greatly & actually acts more mature & like the older sister, defending her sister at school to the point where she's been in trouble a few times.
My husbands family is supportive & are willing to learn. My family is more like "wow, what's up with my grand kids?!?" and on the gossip train about my parenting skills & have more than once called DHS on me.
@j12mc That's terrible. I'm really sorry that you are forced to deal with that, let alone from family. It's heartbreaking for me to know that this goes on, even though I have experienced this first hand. That's one of the reasons I'm trying to build this community. People should never feel alone.
I think people in general could not understand why I needed to stay home with my son, instead of working. The fact was, until recently he had so many social problems that he had a very difficult time in school. My entire life revolved around making sure he could manage, and being there for the meltdowns, and knowing when to tell teachers and specialists to back off. Most of the time he was mainstreamed, though in elementary grades he had a one-on-one aide. He had a lot of difficulties handling the noise, the other students' actions, and everything, really.
People don't get that as a parent of a special needs child, you are always "on alert." Every day is filled with obstacles to overcome. Always another mountain to climb. It gets very lonely. Once in a while you meet someone in the system who really gets it. They know what autism is and what it isn't. Those are the lifesavers.
RE: family? Forget it. My husbands folks called our son a brat. He was excluded from everything, not treated as a normal child. My family said there was nothing wrong with him that a good ass-beating wouldn't cure. Eventually we decided none of those people were worth jumping through hoops for. Too bad for them, that they couldn't see the beauty in our child.
People that take the time to know him find that he's intelligent, funny, charming, and affectionate. Oh well.
No. I'm not what they expected or wanted. Based on my IQ, they feel that difficulty or failure on my part is purely because that is what I want. If I wanted to succeed, I would, basically. Since I am not, I clearly don't. Anxiety, depression, asperger's…none of it matters. Everyone is anxious. Everyone is depressed. Everyone, excluding me, "gets on with life" because it is what they have to do. Therefore, I should do the same. As far as they are concerned, I don't have AS because that is an ASD and I can't have an ASD because I am not stupid. My panic attacks (an average of 5 or more a day) are just me being dramatic. The agoraphobia is not real because, back when I had friends, I would sometimes go to their houses (and stay inside the entire time…). I'm not REALLY depressed because, unlike them, I don't have legitimate reasons for being depressed (like having to deal with a person such as myself). Yadda yadda yadda, me complaining. I think it's a combination of all of the above. Good intentions, a lack of understanding, as well as an unwillingness to learn.