She's almost ten, and she doesn't understand. Why is she different? Why does she still love and need her stuffed animals? Why isn't she interested in boys, or Miley Cyrus or Ke$ha (shudder) or makeup or Abercrombie & Fitch? (not that I would buy her clothes there...ever!) Why is it so hard for her to read? Do math? Talk quietly?
Why do her cousins tease her for things she cannot control?
She's almost ten, and she doesn't understand. Why is it so hard for her to control her frustration, disappointment, anger? Why does she clam up when she gets really upset? Why do her words fail her? Why does she see a speech therapist, reading tutor and feel so "little" (her words,not mine).
She wants to be a big kid. She wants to do the things they do. Sleepovers, going to the movies with friends. After all, she's almost ten. She watches Nickelodeon and the Disney Channel, and though I explain until I am blue, blue, blue in the face that those kids are fictional, their life is not reality, she still aches. For what she doesn't have. Maybe won't ever have.
She's small. She still wears dresses almost always, and has since she was a toddler. It's just what she likes. But she wants to be older, and look her age. She needs help to brush her hair, hates to take a bath. Her self-care skills still need...coaxing.
She's almost ten, and she doesn't understand. Why autism? Why her?
I can't explain it to her. I wish I could. I am in my forties.
And I still don't understand.
Tina blogs here, and at Send Chocolate Now. Autism Sucks is her brainchild. Want to write? email her! autismsucksblog, just add gmail.com
I want one of those shirts that say, "Parenting advice not welcome unless you too have a child with autism." No, actually, I want a neon sign! I am fed-up with the self-proclaimed experts who have endless streams of advice about my child. One mother of three, jumps on my case about not getting my child out enough. She knows a child with autism who goes out every day. Out, in this case meaning to crowded places like malls and parades and the local pool.
It turns out, the child she "knows" (who is a teenagaer, NOT a two year old)goes to the donut shop with his mother every day. The child comes in, orders his donut and leaves. Sounds to me it might be some sort of social therapy.This same helpful mother also claims that if my child was surrounded by children every day, he would "get used to it." Right. The children she speaks of are her three boys. They are cute kids but they fight violently with one anoher constantly. I'm talking rolling on the floor all out brawls! They do not have autism. They are just underdisciplined. They climb on tables (yes the dining room table too), they yell at their mother and they have even slapped her.
This woman knows my plight. I am a 47 year old adoptive mother of an autistic child. My 57 year old husband has severe COPD and is beginning to exhibit signs of eary alzheimers. I am in the house 24/7 x 365. I go out to take my child to his doctor or to group. I also go food shopping. Where ever I go, my child comes with me. So, he does get out. Other than that I am at home. I get no 5 minute break other than when both take naps. I have lost all my friends. Who wants to be with someone so boring? So, any way, my husband recently started having some serious issues with his COPD. This wonderful woman offered to babysit so I could go to the hospital with him. Didn't she show up with her three children and a friend. Well, needles to say, my husband again had to go alone.
My body feels like it has been put through a ringer. I am tired and so stressed out. My patience are wearing very thin. I am telling people I love to F off! Funny thing, people still come to me with their problems. I used to care. Now, I am too burnt out. I cannot get respite, I can't afford what sitters charge. This is it for me for a long time to come. I just hope that when my husband passes, I will have found some way to be there for him. That is, if the aloneness of this whole situation doesn't kill me first.
Last week, over on my personal blog, I wrote a post about assessments. About how I'm not going to let it get to me this time. About how I know that assessments only matter to the ones who are doing them, and that I'm going to be all zen, and barely even look at the results. They are a necessary part of getting access to services and that I know what my son is capable of, no matter what some standardized test says. Heck - I should want him test even further behind so we'll qualify for more! Okay, I didn't actually say that last part, but I'm pretty sure I was thinking it when I wrote that post. Then Friday happened.
Moe is aging out of our Early Start services, so he's been having exit assessments from the Regional Center and entrance assessments by the school district who will take over. On Friday, one of the psychologists from the RC came to observe him during one of his therapy sessions. Our ABA program director accompanied her. So the poor kid is going about his business with four adults staring at him. And of course he doesn't want to do much of anything. At one point, the psychologist - we'll call her Jennifer because that was her name - looks at me and says "Does he have any words?" Like she's never seen an autistic kid before. So she watches for a few more minutes, makes some comment along the lines of "Well, I've seen enough" and leaves. I felt like he, and I, had just failed some test.
Then, our program director pulls me aside and wants to warn me before our upcoming exit meeting that Moe's scores on the social/cognitive part of his assessment have gone down. I probably could have handled that, except I had just heard the same thing from his speech therapist the day before. We had our explanations: we started with a different baseline, understand more of where he really is right now, blah blah blah. But what I was really thinking was, "So what have we been doing the last year?" What has all the struggling and crying (mostly me), hiding in the closet (mostly Moe), 6 hours a day of people in and out of my house, putting my dog on Prozac, and me never getting out of the house been for? According to the tests, nothing. Less than nothing.
After lunch, I brought Moe to his school district entrance assessment. They had already met with my husband and I and asked us all the same questions we've answered 17 times but I still never really know the answers to. (Does he understand it is dangerous to run in the street? I don't know, I've never let him try. It this is a trick question?) This time, I just dropped him off for an hour. When I picked him up the school psychologist told me that they couldn't get through the whole thing and that I would have to bring him back again this week. And I'm not sure why, but that was the last straw. I lost it. Not right there in front of the school secretary and the six year old looking for a band-aid, but later, once the kids were finally in bed and I could get in the shower and safely hide from anyone who might suggest I need an assessment myself.
Look, we have a Facebook page, could you go and Like it so we get more exposure? As you know, I do this for the community, and not really much else, but I want more parents to know they have a place.
Tina is the creator and head chick in charge around here at Autism Sucks. If you want to write, just ask! Her personal blog is Send Chocolate Now, because when you have kids with autism, life is survivable, but it takes chocolate.
I started reading this blog when I first learned that autism sucks. Which was about 3 months before my son, nicknamed Moe, was finally diagnosed. That was almost a year ago. It still sucks.
This weekend we had my daughter's first birthday party. I couldn't stand the thought of more people invading my home (10 therapists a week is enough, thank you), so we had the party at Gymboree. I thought it would be fun and involve no work. I though that Moe would have a good time too. He's into climbing everything right now so that would be good. And he used to love it there when he was a baby and we had time to do things other than therapy.
Well, guess what? Autism sucks because it is unpredictable. Moe had a major meltdown the moment we stepped in the door. Fortunately, none of the other guests had arrived and he calmed down in a few minutes. He spent his time on the outside, bouncing on the trampoline in the corner or running around the edges with a juice box. Didn't even participate when it was time for bubbles or the parachute. For a while he obsessed over the drinking fountain until he couldn't find anyone to pick him up anymore. He exhausted his grandparents who were kind enough to chase him around the room so my husband and I could spend a little time with our daughter who is going to be one year old and deserved a day all to herself. So we could watch her eat her first bite of cake.
We call her Jelly Belly. She doesn't have a lot of friends of her own. We know a lot of people Moe's age, leftover from the playdates we used to be able to attend. They came, and some of them have baby brothers and sisters now, so they came too. Family and old friends came and there was a nice crowd. But any time the group gets together, I'm reminded of how different he is and we are. I'm reminded how much I love three year olds and how they talk and how they follow each other around the room in packs, looking already like teenagers. I'm reminded of how I've been robbed of that time with my little boy.
I'm reminded of how much autism sucks.
Jen writes about life with a baby girl and an almost three year old son with autism on her personal blog, Anybody Want a Peanut? She also really loves cake, something she and Moe have in common. You can follow her on twitter, @wantapeanut.
When the boys were first diagnosed, people kept telling me, “It'll get easier as they get older.” Obviously, those people had never raised autistic boys.
I am a single parent. I have twins, one high functioning and one low functioning. My low functioning son has run me through the gamit – last year we discovered he is an eloper, after jumping the fence and being found on the 91 freeway. He also jumped his grandparent's fence and was found on the Los Alamitos Army reserve Base. Now 13, he is in the middle of adolescence and has discovered masturbation. Yes, this is one topic where there is no help out there, on the internet or from doctors. People don't want to talk about it, but if you have a low functioning child who is not developed enough to ejaculate, he will pee, and pee everywhere. Behavioral therapists tell us to do social stories, which he memorizes but doesn't generalize. You can't take his reinforcer away – it's built in. We try to tell him that shower time is the time he can do that – the kid takes 20 – 30 minute showers now. Lucky kid - I'm lucky if I get 5 minutes. In fact, this morning, while I was taking that 5 minute shower, he did it again and peed all over the floor. The doctor is raising his prozac dosage, but doesn't have hopes that it will calm his behavior – it might make a 50 year old man less interested, but it's doubtful it will have that effect on a 13 year old boy. But we will try, because at this point, we will try anything. He mainly does this at night, when everyone is asleep, so there's no chance at redirecting his behavior. He will play with himself, then pee over the side of the bed, down the wall, and onto the floor. I discovered this when his room began to smell, but I couldn't find anything obvious – his bed is a loft bed against the wall, and there are baskets of toys and things under it. Only when I got down on the floor did I discover that there was a veritable flood of pee, the carpet was soaked beyond ruin, and the hardwood floors underneath were beginning to get moldy.
As they boys get older, I find myself wishing that just for a day, I had typical kids, and if that wasn't possible, wishing that everyone else had low functioning autistic kids, just so they'd really know what I go through.
written by a mom who wishes to remain anonymous, based on subject matter
Today I cried. I had finally had it. Having children on the spectrum really sucks, and I have gone on for so long with just “dealing with it” every day that it finally happened. Mummy meltdown. Not to have a poor pity me session but seriously it was bound to happen. How long did I think I could actually go on here with 6 children, no help, and two on the spectrum?
Granted there are other children who have far worse disabilities, but here in this household it is bad enough. The worse thing about having a child on the spectrum is that the do not look like they have a disability. They look so typical. But back to the mummy meltdown. It was probably brewing over March break as each child came down with a nasty stomach bug, one after the other. So when it was back to school today I was glad to be back into the regular routine.
However, my Joshua had a rough time getting back into the school thing and didn’t want to go. I finally managed to get him into the truck and over to the school, but once there he put up a terrible fight and wouldn’t get out. I had to call out the VP who fortunately for me is a great guy and totally gets Joshua. So after about 15 minutes of Joshua screaming, kicking, hitting and trying to run off, the VP managed to get him under control and into the school and so I left.
Then I cried. Hard. The flow of tears felt like it would never end. For half an hour I allowed myself to scream “why me?” I allowed myself to yell at all those ignorant people who claim Autism can be cured by diet, or other things that only give us parents false hope. I allowed myself to feel the guilt and shame that comes along when my son chases the garbage man in his truck down the street screaming for him to give back his stuff, or when he has violent outbursts, or when he has a meltdown in the grocery store. I allowed myself to feel guilty about not being able to spend more quality time with my 4 typical children because Zak and Josh require me 24 / 7. I allowed myself to be me, not the supermom people think that I am.
Then I stopped. Wiped away the tears. I am a wife, a bitch and the biggest advocate for all of my children. I am a momof6 who only has time to feel sorry for herself for about half an hour, once a month or so. Times up.
It's been a bit since we have posted, but we are still around.
If you have experience with autism, consider writing here. All you need is your story.
Email sendchocolatenow AT gmail DOT comTogether, we can get through life with autism.
Tina
By the word normal, I mean typical. Regular. What you expect to get when you get a kid. The word most people use anyway, whether or not it's PC these days or not...
I'll go ahead and say it: My kids are not normal. I can be OK with that to a point. There are a lot of people that are not normal. I sure don't mean to step on any toes here, so please don't take offense. I am in no way trying to insult anyone or anyone else's kids. But my sweet kids, they are not normal.
I have three children. E (boy) is 11, L (boy) is 6 and K (girl) is almost 2. E has Asperger's ADHD and OCD, L has high functioning Autism and K is speech impaired, very delayed in all areas and though not diagnosed yet, she stims and requires a lot of special accommodating, just like her brothers.
I suppose people feel sorry for me and my husband, but I don't want anyone to. I just would love for people to be more educated about this messed up world of Autism. How there are so many degrees, variations, exceptions, labels, theories, treatment options and it's confusing. It's not just that "your kids are delayed, they act a little strange, they'll outgrow it - hopefully". Not even close, thank you very much.
My kids look completely normal and sometimes you can look at them and would never know there is anything different about them. At first. But E has no social skills and flaps his hands against his legs and in his lap very loudly. He repeats things he heard over and over (yeah, like Rainman). L gets overwhelmed, sometimes freaks out and clamps his hands over his ears and will not take them off. He babbles like a baby in some little babble language he made up and can only put together a few words at times. K still eats baby food from a jar and still drinks from a bottle because she can't tolerate much else or she gags and throws up. She screams and goes ballistic if we go anywhere where there are too many people or there is too much noise.
The two older ones still have toilet issues and need pull-ups sometimes. They ride the special bus. They're in special ed classes. They have almost no awareness of how other kids their age behave, even when they are around them. They get upset and throw screaming temper tantrums if something we see as trivial upsets them. They don't get concepts other kids much younger than them seem to understand. We don't go to movies, the zoo, museums, the beach, the library, Chuck E Cheese,anyone's home or any other place that would be certain disaster should I be brave enough to try to take just one of them there. Too much light, noise, people, excitement, activity, etc. Yes, my kids have had complete meltdowns in public. The first rule that I learned the hard way is: don't make eye contact! When my kid starts up in public and it's getting ugly, I don't make eye contact with anyone! Focus on the child and deal with it accordingly. Yes, people look and sometimes they comment. So? I deal with my kid, not the ignorant person that isn't minding their business.
This is not even all of it. See, this Autism thing, way more than any parent bargains for..
You can't just give kids like this more discipline, or expect them to suck it up and act normal, or try to distract them with a toy or video or something. This is just who my kids are and it's all I know. And as bad as this sounds, please know that my kids are the sweetest, most beautiful babies to me. They are capable of loving us, and each other. They have strengths, skills, and something to offer. They are special and unique. And sometimes, they surprise when they do or say something typical.
I do make my kids behave, apologize when they have done something they should not have, and I am teaching them manners. I will not let Autism be an excuse for my kids to get away with doing anything that would be wrong or cause harm to others..
It's hard for me to relate to parents of typical kids. I will never know what it's like to have a normal child. And I don't know what it is that caused all of mine to have this. And it's not something I can really make anyone understand if they are not going through it themselves.
I hope this blog can help anyone that would like to understand more, either for themselves because they have a child with Autism, or as someone that wants to know more because they don't.
It's Autism Awareness Month - can't we all just TRY to get along?
We - mothers (and fathers) of kids with Autism are a community, divided.
I hate it! Hate is a strong word. But, it really sums up how I feel about this. It bothers me. We all have something in common, a child with autism. That should unite us, yet instead we are so very divided. Attacking each other for our beliefs on whether autism was a result of an environmental trigger or vaccines or genetic. Attacking each other for our avenues for our choices in therapies or interventions.
Why the hostility?
I have many many friends who are also moms of autistic kids, like myself. I'm part of several parent groups online and off and I wouldn't have it any other way. Some of my friends are like me and others very different. I have friends who do biomed and friends who don't. Friends who believe their child was autistic from birth & genetics and others who feel it was environmental or vaccines. I have friends with kids on the diet (like my son) and friends who think the diet is a waste of money. I have friends who do chelation and/or HBOT and friends who do not.
Those who know me, or read my blog know that I practice the GFCF diet for my child. I've also shared info on some supplements that he uses. I don't get into nitty gritty on dosages or meds we may or may not use as I don't think that's the general public's business. This past week I reviewed two books that deal with biomed - Jenny McCarthy's new book and LeeAnn Whiffen's book. Immediately I witnessed fallout among my circle of "friends" because I go on record as doing some biomed for my child. How dare I? I've taken a side. I'm Biomed. I'm the evil. I SUCK! Keywords: MY CHILD. Tonight, I am sick of walking on eggshells and trying to not offend anyone. This is my child we are talking about. What you do with yours is your business and I'm not chastising you for making different choices for your child. Keywords: YOUR CHILD.
I've made a point to be Switzerland as much as possible and not cast judgement or throw stones at others for their choices. Yet, I continue to be on the receiving end of stones and I'm feeling pretty beat up. When the community is so busy fighting and at odds with each other over causes and treatment, where is it getting? Nowhere, and fast.
-----------------------------
Hi, I'm hellokittiemama and I'm a mother of 2 very special children, living at the Jersey Shore. You can find me blogging my mad life with an autistic genius and a neurotypical diva, the gluten & casein free diet, vaccination choice, and more... over at The Bon Bon Gazette - because you know that stay at home moms really do sit around all day watching soaps and eating bon-bons. Got Bon Bons?
Nothing hurts more than watching your child be hurt and ostracized time and time again by other kids.
Mean kids.. Suck!
The neighbor kid used to jump our fence and play with my son's yard toys (swingset and sandbox). It would be one thing if he was coming over to play with my son, but he wasn't. He never had anything nice to say about him or to him, for that matter. He'd just make comments and say "He's wierd", "What's wrong with him", "I don't like him".
I believed for a long time this was just because he was young (about 5 or 6 at the time) and just didn't know any better. Then, I found out he was in an inclusive classroom and around autistic kids all the time. I thought, dear god - please tell me he is not like this with the kids at school. And if he is, please let a teacher guide him. But it just kept happening. It became clear, he was just going to continue talking about my son in a rude manner right in front of him as if my son didn't even exist. Hey kid, he might not talk a lot, but he heard every word that you said.
It made me boil inside. I had enough! I got off my wimpy butt and I talked to his parents. His mother was somewhat apologetic and said she would talk to him. And still, he was mean. He would climb our fence any time we were outside (and sometimes when we weren't outside) and play in our yard. This drove me bonkers (for liability reasons and also just out of a plain lack of respect). Finally, one day when he was half over our fence headed into our yard I told him: "If you come in our yard and play with Alex's toys, you need to be nice to Alex and not rude.". The next day his parents asked me why I yelled at their son. I told them exactly what I said, and they couldn't argue with it. Two years later, every time we go outside in our yard this kid still does the same kind of stuff. And, because of it we don't play in our own yard nearly as much as we should. How sad is it that my own kids can't enjoy playing in their own yard, with their own toys?
We were recently at a birthday party and a kid called my son "stupid" over and over and over again because of something he did that was completely innocent to him, and a part of his Autism.
I've come to realize that my son has a target on his back, Autism.
Pick on me.
Easy Target.
A sacrificial lamb.
and it sucks!
Here's what I want to know:
Is your autistic child the prey of bullies and on the receiving end of teasing by other kids? How do you handle this?
I'd love any pointers because it is killing me to witness this happen to my kid time and time and time again.
Just stop being mean to my kid, ok. It is Killing me!Hi, I'm hellokittiemama and I'm a mother of 2 very special children, living at the Jersey Shore. You can find me blogging my mad life with an autistic genius and a neurotypical diva, the gluten & casein free diet, vaccination choice, and more... over at The Bon Bon Gazette - because you know that stay at home moms really do sit around all day watching soaps and eating bon-bons.Got Bon Bons?
Hi, I'm hellokittiemama and you can take advantage of me. I'm the mother of 2 children - one with Autism, and therefore that means I have nothing better to do than watch everyone elses children for hours on end without reciprocation.
I know that childcare and babysitting options for an Autistic child are few and far between. Why do you think I am home every day in time for the bus and that I do not work outside of my home? It isn't because we are dripping in money and thriving on a single income... but don't I wish? The truth is that it is because I have no place for my son to go after school or when the nurse calls me at 8:30am to tell me that he threw up or had a bathroom incident and needs to be picked up. It is my obligation to my family and to my children, and I don't regret the fact that I am at-home though I wish it were under very different circumstances.
You see, my child has Autism so instead of being out and about I have to be home for the daily bus drop-off. I'll be home, so what does it matter if I have another child or two to chase after? After all, I have a child with Autism already so I'm used to it, and I can watch your child with Autism also and their siblings - heck, even one or two of their friends too- even if it completely disrupts my own child(ren)'s routine(s). Don't worry, they'll be fed dinner also - only the best organic fruits and veggies, overpriced 'designer' chicken nuggets & juice. Eat me out of house and home, go right ahead. Even if, we had made family plans and I let you know about them - so please be back by 5pm - you can still show up at 8pm and everything will be 'ok'. And the next time you ask me because you need a favor - I won't say 'no', because I can't.
When in the past 5 or so years since my 7 1/2 year old son got awarded his very first "A" - that would be Autism, did I lose the ability to stand up for myself?
I spend every day standing up and fighting for my son that my own defenses have become annihilated.
Hi, I'm hellokittiemama and I'm a mother of 2 very special children, living at the Jersey Shore. You can find me blogging my mad life, motherhood, autism, diva siblings, and the gluten & casein free diet over at The Bon Bon Gazette - because you know that stay at home moms really do sit around all day watching soaps and eating bon-bons.
Email me if you want to write for this blog. Just leave your email so I can add you as an author. ALL who are intimately familiar with autism are welcome! SPAM COMMENTS WILL BE PROMPTLY DELETED... don't bother to post.
Children don't suck, but autism often does.
Parenting a child with autism really sucks, a lot of the time.
She's almost ten, and she doesn't understand. Why is she different? Why does she still love and need her stuffed animals? Why isn't she interested in boys, or Miley Cyrus or Ke$ha (shudder) or makeup or Abercrombie & Fitch? (not that I would buy her clothes there...ever!) Why is it so hard for her to read? Do math? Talk quietly?
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