My 4 year old son was diagnosed with autism 2 years ago and I have found the site Talk About Curing Autism to be so extremely resourceful. Check them out here: http://www.talkaboutcuringautism.org
PS ~ It was started by a couple of moms with autistic kids!
Oh and PSS ~ The daughter of one of the aut.is.m. s.pea.ks board members has said that even SHE is against them for what they do NOT do for autistic kids.
REALLY!?! WOW. Okay. Thanks for the tips on AS (heh) and I’m going to put together a resource page for autism on Band Back Together. I don’t have (shockingly) any autism posts yet.
This is some tricky shit, Becks. Of course your son is perfect, as is my daughter Hannah (judge for yourself on her videos on my blog) but would I change her having cerebral palsy? In a fucking New York minute. I love her strength and determination, I love her inner and outer beauty, I love seeing her joy at getting new skills, I love everything about her, but I would never have wanted her to work so hard at things that other kids get to do automatically, like stuff food in her mouth with her right hand. Or eat with a grilled cheese sandwich in one hand and an onion ring in the other. We’ll get there, because I am going to change her, but I’m doing everything in my power to help her change so she can be the most able she can be – the most capable of sucking the marrow from the bones of life. Not in pain because a crooked walk makes her joints pull out of alignment all over her body. My last post on my own blog is about my struggle to deal with how conflicted I feel right now – joy that my baby is doing so amazingly well, and horror that my baby experienced a stroke. Now realize, I am still in the grieving process, and not fully formed as the butterfly I will be. One day I might say I’m glad, but as of right now, no, officially not there yet. I smile and stay silent when people tell me “what doesn’t kill you makes you stronger” – she would have been strong anyway. I remember reading something written by a mother of an autistic child about her reaction to people saying it is just a bump on the road of life. Harrumph. I don’t find Hannah, or any child with any diability at all to be defective, or needing to be changed – the distinction is to give them the tools to do the most they can in life, and that means a fair bit of intervention. This distinction is the tricky part, I think those of us with special needs kids get a raw deal here. How do I teach this to others when I don’t understand it myself? When I rock my daughter to sleep I whisper in her ear that she is the perfect daughter for me, that she will only get stronger with time, that her right hand will become more agile and stronger, her right leg and foot will not let her down, and that I love her beyond words. Then I spend the entire day seeking every opportunity to incorporate that intervention in every day activities because what we do now at this age will pay the greatest benefits in the long run. I ask her to turn pages of the book with Righty, I force Righty to touch the textures on the touch and feel book we read, I drop by the park coming home from work to make her climb a lader to get the reward of going down the slide, when ladder climbing is my goal. I try to build bilateral skills in every activity, make her walk up and down hills and on uneven surfaces whenever possible, and buy toys that will stimulate skills as well as entertain. My PT says one day I’ll actually make her fall on purpose (I don’t know about that) and yet all the while, every goddamn day, I hope I’m not telling her in any way that she is wrong, that she is not good enough, that she needs to change. I try to put it to in the positive – Righty can help you carry more toys! Righty can help you give a hug! Put on your own socks! If you push with two hands you can steer the car better.
If any of the rest of you are struggling with this, maybe we can have a forum of support on Back Band Together. Perhaps this can be what I contribute? But first I need to get it, and people, I am struggling.
I love this post and I love this particular response for it’s honesty. My 2 sons have ADHD which is being well-controlled with medication. On my invisible “scale” of childhood disabilities, ADHD is very very minor. But it is real and it is very hard to describe. When I try to explain the disorder to other people, they look at me like I’m a moron who doesn’t know how to be a good parent. “Every kid acts like that. They just need more discipline.” Yes, my boys are absolutely perfect in my eyes. But I sure would love it if they didn’t have to struggle. I would love to not feed them their medication every morning. It’s a delicate balance.
I can’t imagine getting those awful responses. When autism is no longer “hot,” we parents of autistic kids are going to get similar responses. I know it.
It really is a delicate balance. I would love some of the things to change and be easier for my son. But I don’t believe that he is miserable as he is.
I too have a child with ADHD who was medicated for years and now that he is in 6th grade, has chosen to go off meds. It is a struggle- he’s quite disorganized, but I am trying to show him different ways to do things and provide him with an ultra- healthy diet so he can learn. I do get flack from his father that it is just lack of discipline- very frustrating.
@GingerB, I think you are getting it, though. Everyone pushes their kid towards success. You’re just having to do it earlier and harder and in ways you didn’t expect. Don’t think you’re not accepting your child as she is because you want her to succeed in life.
There are plenty of parents out there who would do this pushing because they think they can make their child not have the disability.
(Note: written from the point of view of someone who does not have a child with a disability (unless you count social awkwardness, and she isn’t even 4 yet) but who observes people and tries to determine their agendas.)
Hannah is totally fucking perfect and she’s my hero. You know I love that girl to pieces.
I think that this is a great idea, Ging. A totally great idea. Post it over in Ask The Band.
We all struggle. I can’t talk about the ways I struggle on my own doorstep any more.
Would you consider writing about CP in a couple of posts? Maybe telling Hannah’s story? Could you help me put together a resource page for CP over at Band Back Together?
Someone you may want to contact about CP is my friend, Finn. She has an older child who had a stroke in utero which resulted in CP. I believe he’s in 5th grade now. She may have great insight for those of you dealing with this and also for you, Aunt Becky, if you start a resource page over at Band Back Together. Her blog is A Life Less Ordinary. I think she’s really awesome for a lot of different reasons.
Okay, my cold, dark heart just totally melted. (I don’t really have a heart, that’s a joke) As an Aunt of one autistic nephew and one nephew who was born with major heart problems, I have been not so much on the sidelines of children going through hell, fighting through serious challenges and getting to see them blossom and overcome. Dylan, my nephew who has autism is absolutely freakin awesome and I defy anyone to try to find a way to tell me otherwise without getting a beatdown. Blake, on the other hand, may or may not be the only 7 year old in the world who sounds like James Earl Jones, with giant blue eyes and the ability to work an entire room of adults like Bill Maher. Seriously, he is a comedian, but his humor borders on the inappropriate. (Not my fault, I swear) The heartbreaking moments of seeing Dylan’s frustration when he was unable to communicate his feeling’s to us have passed. The 4 operations necessary to repair Blake’s heart valves have come and gone, the 9 months of him having a thrach in passed slowly, but they passed and he has cool scars to show the other kids in school now. What we all learned is kids are tremendously resilient. Beacons of light. They rebound and teach us so much more than we know, if we are only smart enough to stop once in a while to let them. Hannah is amazing. Brilliant. Her light will continue to shine through. It will light the path.
I have to admit, it was hard for me to get through this post. My son also has CP. He will be 10 in November and he has came such a long way (he was diagnosed when he was under a year old). His frustrations break my heart. Fortunately, therapy helped SO much. Most people can’t even tell at a glance that he has CP. My son is perfect in every way, to me, but unfortunately, not to some people in this cruel world. I do the same things that you were mentioning. I tell him that with practice, his right side can function like his left, it’ll just be harder. I cry when I see him wanting to play baseball so bad, yet I know it would be a struggle for him because he would have to use two hands and run quickly. I see him get pissed when he can’t open his own drink because the cap is screwed on too tight. I showed him a video of Nick Vujicic and showed him that anything is possible if you put your mind to it. I want to punch other children in the face when they make fun of him. He gets so fucking discouraged and I hate that. I want to make the pain go away when he can’t sleep at night because his muscles hurt. I wish I had a magic wand to make it all better… I would gladly go through it for him if I could. I was trying to find a link to your blog, but didn’t see it. I’d like to read it.
Just in case you didnt know by now….. You are an incredibly fucking AWESOME Mom! With amazing kids. Not only Ben, they are all amazing! And screw anyone that has the nerve to say anything different!
Let me just start by saying that I think you are awesome, and I agree with you 100% about the wrongness of folks who are all about the “cure” of autism and not listening to actual autistic people (and I have friends on the spectrum, too.) I believe deeply in the beauty and value of autistic people, wrote a post called “From Autist to Artist” about what a fine line exists there. I love my autistic son to pieces. I do not define him by his autism, I see the whole child, his person-ness, I totally get that.
But also? If I had a magic wand that would take away Jacob’s autism but not change the core of who he is, I would use it in a heartbeat. Or not even take it away, but just change/fix the part that of it that makes communication and language processing so damn hard for him? You bet I would.
You see, you and your son are some of the lucky ones. Do you know how lucky you are? How painful it is for me to read this?: “Because my son, as quirky and strange and goofy and wonderful as he is, well, he’s older now, and he’s been through all the therapies and the treatments and he’s in a regular classroom with no aides and so, I guess I did something right.”
Because my kid? Couldn’t survive in a typical classroom for 5 minutes. He would be destroyed, shredded, and he would likewise shred the classroom. My kid is not just goofy and strange and wonderful. I mean he is all that, but he also cannot tell us what he is thinking and feeling much of the time. Half of what he says is still scripted and echolalic. He still doesn’t understand so much of what goes on around him because his language processing is just do deeply impaired/impacted. And our world, our understanding of it? It is SO based on language.
And the absolutely most painful thing? He has no friends. Not a one. And he wants them so badly, is near desperate for friendship. But he doesn’t yet know how to be a friend. He is too loud, too intense, too in the face of anyone he approaches. He yells at them, he roars at them, he overwhelms them. They run away. My son does NOT know that “know that he is quirky” he just knows no one likes him, and it wounds him deeply.
And his twin brother, whom he loves so much, wants to be with and play with and talk to all the time? Hates him passionately and wishes he were dead. Repeats this desire regularly and loudly and says it would be better to have no brother at all than an Autistic one. My heart is broken daily, hourly, right now. These are not good times.
And it’s not like Jacob is not growing and changing daily, making amazing progress. He is. But he still sings, shouts, talks loudly, all day, all the time. It is an aural assault to be near him. And we live in a small apartment. And his brother wants a brother who can actually sit down and play with him. Who can play games, and understand the rules. Who doesn’t demand that the same thing be done over, and over and over again, who doesn’t take apart and break all his toys.
And one more thing. I am sure you are an amazing mother, but I am too. When you wrote: “…and so, I guess I did something right.” I am sure you were just being flip and funny, you were congratulating yourself, which you should. But for me it was a kick in the gut that took my breath away. You were telling me that my kid wasn’t where yours is because I’m doing it wrong, not doing enough. Because he is one of those whose kids will never in a million years be mainstreamed.
And I have given up my life for my kid. He has had every therapy imaginable, all the treatments. We give up things to be able to pay for them. I make special food for him, he takes 100 supplements a day. I work with him constantly, scaffold his interactions, take him everywhere in spite of how exhausting it is because I will not deny him the world. But all this cannot change his language processing challenges. That is an organic brain function.
You son can be mainstreamed because the language processing parts of his brain are not so mis-wired that he can have a conversation, have the (language based) abstraction of thought that allows him to know and appreciate his own quirkiness.
I am not saying you have NOT “done something right”, but just please acknowledge the huge piece of luck that is a part of this, too.
Of course your son isn’t more severe because you are a bad mother and my son isn’t less severe because I am a good mother. It’s not about that and I’m sorry that I made you feel badly. It is clear that you are a wonderful mother in an impossible situation and I am so very sorry for that.
That was a comment that I did make in a flip way and it wasn’t fair. Of course it wasn’t as an attack to anyone.
I haven’t talked about the more difficult parts of raising an autistic child which is by my own choice, and I don’t regret it.
Answering this question was extremely difficult for me. I didn’t want to badmouth my son knowing that some day, he will read this, and seeing me falling all over myself to apologize for something that he is not sorry for will wound him. That’s a line I walk.
Perhaps I shouldn’t have tried. Maybe I should have punted it over to Band Back Together and let the people over there do it. My perspective for autism is clearly from the lighter spectrum.
I was giving the asker my perspective. I do not know if I did justice to her question and I hope that I did.
And I’m sorry that in that, I hurt you. It was not my intention.
And I am sorry I overreacted. I know you didn’t mean that you felt like a superior mother because your son was on the milder end of the spectrum. I’m just feeling especially vulnerable because of the crap time I’m having lately (on top of all the shit w/ my kids, we’re on deathwatch for my hospitalized mother-in-law right now.) And I think there’s some envy there, too. I know so much of my son’s wonderfulness is still locked inside him and I want it to come out so desperately. He would still be quirky, hell, he comes from a quirky family.
I’m glad you answered the question because we need to talk about all this stuff, and as much as possible. And it’s important that people with freshly diagnosed kids are hearing from those of us who are celebrating our children, because there is too much of the despair out there (I mean, I’m a Hopeful Parents writer, after all.)
Thank you for your response, and I am sorry if I made YOU feel bad. You didn’t hurt me, my life is hurting me right now.
And please do come visit my blog & read my “Autist to Artist” post. Its what I write when I am celebrating my wonderful child.
I cannot wait to read about your son. I clicked over earlier, but my daughter began chewing on my arm and I had to stop reading.
I was going to ask you if you’d considering writing or reposting some of your posts about autism on Band Back Together. I can clearly see by these responses that people need a place to talk about autism and I have the space on my group blog to do so. I’ve asked a few others to do so, and they are going to.
But you have a perspective that I think is amazing and I know people would benefit from having so many different perspectives in one place.
Absolutely no pressure whatsoever. Any time. Anywhere. And if it’s never, I totally get that, too.
Much love and I’m sorry I came across as smug. It was not an easy question to answer and frankly I don’t know that I answered it well. Honestly, I don’t know how to answer a question that has such an incredibly broad range. I can only give my own perspective and I didn’t want to scare the mother. Lord knows, it’s scary enough as a new diagnosis.
I really hope things improve soon. Life can be a shit sandwich sometimes. It’s been a shitty couple of weeks here, too. Looking for the sun. Hoping it’ll come out soon.
I’m replying to what you wrote below me, but I guess we hit the “thread limit”
1. I would love to bring some of this to the Band Back Together site. Thank you for asking. I would have to start w/ re-posts because I am tapped out right now between trying to keep my own blog posty and my monthly obligation for Hopeful Parents (the 10th is coming up & I’m starting to stress). But also it feels like a good place for me to share when things feel too intense for my own site.
2. You really didn’t come off as smug, I was just being hopelessly over sensitive this AM, and I’m sorry you took the original post down,it had some valuable things to say. I hope my comments didn’t cause you to do that. Self censorship is never a good thing (unless you’re a total tool and your are NOT that in any way shape or form.)
I had NO idea that WordPress HAD a thread limit. That’s HILARIOUS. And awesome. I’m THRILLED that you agreed to post some of your stuff on BB2G. It’s a group blog, so whenever you have time (NO PRESSURE), just create a login and throw whatever you want up there. Throw it ALL up there for all I care. This post has illuminated to me, at least, that we all feel we need a space to really talk about autism and special needs parenting. That is important that I tap out everyone I can to help create it.
Autism has so many different forms and I want people to hear from all sorts of parents. That is what I would have wanted, had I needed support. That’s still what I want.
And no, you did not make me take down the post. I realized that what happened was people were starting to debate whether or not autism should be cured. It’s an interesting debate.
BUT, it had nothing to do with the person who needed our love and support right now and I was afraid with what the thread was turning into, she would feel worse rather than better.
Does that make sense? I was not upset. I was afraid SHE would be upset. I hated to think that someone who had reached out to me for help and guidance would turn to the comments and see the lot of us going around with each other. The discussion is great and I love to have it. It’s just not for HER.
BUT, it’s full of the win! I have tapped some help on Band Back Together now! YAY!
Hey Aunt Becky – I totally agree about the US Autism and Asperger Association. I had never heard of Asperger’s before i read about it in Parade magazine when my older son was in second grade. That was 10 years ago. I knew my kid was different. He had every symptom of this thing no one else had ever heard of. His teachers had no idea. I had to go through years of trying to get him tested – we moved around a lot and each school system had different requirements for getting in the queue to be tested. Then if they found out we were moving within the year, they would ignore us until we left. – At any rate, now he’s a senior in high school. He has an A/B average and should receive a full ride scholarship to the college of his choice. He traveled to Japan last summer (without ME) as a People to People Student Ambassador. (My son is obsessed with Japan and all things Japanese). He has friends. Friends who realize what a wonderful amazing intelligent funny person he is, even though he’s hard to get to know. Friends who have helped him reach out socially. Friends who bolster his confidence in ways only friends can. (Moms can’t do everything for them, even though we wish we could.) My son is perfect the way he is. He doesn’t need to be cured of anything. He just needs the same thing all of us need – understanding.
This is a topic I struggle with as well — I know that my son (4-year-old with Asperger) is at the higher-functioning end of the spectrum, so I think it’s easier for me to be all, “yay for neurodiversity.” I can only imagine that moms of children with more severe autism — whose children have never said “I love you, Mommy,” want to tell the neurodiversity folks to suck it.
Absolutely. And the people I talked to were clearly high functioning. Without any more information from the asker, I had to respond from my point of view. That’s the only one I have experience in. I cannot give prescriptive advice for anything else and I do not have experience in anything else.
I do not talk about autism very much here. I never really have. For me to open up this much about it was very hard, and already, I regret it.
I don’t think good discussion is ever regrettable! And I certainly didn’t mean my comment as a criticism of you or your response to the advice-seeker. I think a lot of parents of children on the spectrum struggle with this. Which is weird, given that it’s a moot point — none of us has that magic wand anyway.
It’s hard. I love my son the way he is. But I hate seeing him struggle.
Yes, absolutely. I do, too. I love my son dearly and it’s been hard. Wickedly hard. I don’t really talk about it and I never really have, but it’s been a difficult road. Incredibly so. I could get up and say how many things I have struggled with, but at this point, it doesn’t matter.
I never know quite what to say to someone who has gotten a new diagnosis. As ender above (who is an aspie and my VERY good friend) has said, there’s no universal answer as to what raising a child with autism is like. It’s like trying to tell someone who is having ANY child is like. It’s simply unexplainable.
I strongly caution anyone with this diagnosis to view their child as their disorder. No one is defined by one thing alone. I have brown hair. I am the adult child of two alcoholics. I am a survivor of abuse. I am also a Leo. These are parts of me. Not one of these things can define me entirely.
Does that make sense?
It’s hard to express my sorrow for this without feeling I am betraying my son and all of his wonderful bits. The pain I have experienced in raising him is my own. Not because of who he is. I know that you probably understand this.
I hate to think I hurt others by expressing this badly. Truthfully, I don’t know how to explain this.
RIGHT! I feel exactly the same way. My son’s Asperger is mild. He is only a half-step different from the “normal” kids. But that half-step caused problems with teachers and other kids every day. Because you don’t expect the half-step change, so you trip on it every damn time you walk that hallway. I’m not saying it wasn’t (isn’t) serious. It is, for me and for him and for everyone who had to deal with his issues in person and in public. But it is a completely different struggle and challenge that is carried by parents of more severe conditions. I bow to them.
As a parent of a child with a very serious issue (Mimi) and one with a mild issue (Ben) I understand both sides very much. I can discuss Mimi’s issues more easily. With Ben, it’s so hard to explain my feelings without feeling I am betraying an integral part of who he is.
Yes! I know exactly what you mean. My son is a diagnosed Aspie on the high end of the spectrum (he’s 12). He’s also ADD. It IS hard to talk about it, because it’s a part of them, IMHO.
First, I haven’t read all the comments. I will eventually, but it’s too much for me all at once, so I apologize if I repeat something someone else has said. I will say that as far as the cure debate goes, check out Elizabeth Moon’s The Speed of Dark novel. Her now-adult son has autism and this book is a fictional exploration of a near-future where there an experimental cure is discovered. It doesn’t really judge and it’s an amazing read. (She’s also on twitter @emoontx but doesn’t talk a ton about autism – I think she does that on one of her many blogs)
What makes an initial diagnosis of autism or asperger’s or “on the spectrum” so difficult is that it is such a broad spectrum that we really don’t much understand. There is everything from the completely non-communicative, to the savant, to the “weird” college professor. (One researcher estimated that as much as 80% of college professors would be considered on the spectrum … hence the weird social skills sometimes demonstrated by these smart folks.)
I started to delete this comment because I figured that I wasn’t really contributing anything to the conversation, but then I read a couple more comments and realized I was actually on to something, so I guess I’ll try to finish this.
I follow a lot of aspie folk on twitter (@enderFP) – one of my twitter lists is aspie/autist if you want to connect with other folks. One quote that keeps cycling through the spectrum folks really stands out: If you’ve met one person with autism, you’ve met one person with autism.
Even more than any other condition, autism is unique to that person. I often think that autism and the personality are so intertwined as to make it impossible to determine what quirks are personality and which are the effects of the autism.
To me, I think that all of these “new” learning disabilities and difficulties and ADHD and autism are all just showing how unique we all are and how much we as a society prefer conformity (by new I mean we’re only now recognizing them and trying to figure out how to help rather than any of them having suddenly sprung up out of nowhere). We all learn in different ways and have different strengths. Psychologist Howard Gardner theorizes that there are at least seven types of intelligence and that school systems (and most businesses) only value two of those, attempting to force everyone into those two little molds when we’re really so much more diverse than that.
And I guess what I’m saying here is that the challenge of raising any child is finding ways to celebrate those differences in ways that feel like celebrations to everyone … and still figure out how to co-exist and “conform” enough to find your own place in society. For someone with any kind of difference this becomes more of a challenge … but it doesn’t have to be all difficulty and stress.
Sorry, this is probably pretty disjointed – I blame the pain meds. But I couldn’t let this go without some kind of comment. Hope it’s been at least somewhat readable and at least somewhat helpful.
My brother is 20 and pretty severely autistic,the only thing I regret is how long it took and how hard my mother had to fight to get him diagnosed. She was told he had everything from ADHD to schizophrenia. He was on ritalin for a long time and it stunted his growth making it that much harder to fit in with his classmates. When he was 9 his teacher stuck him in the back of the classroom and ignored him completely. Now that he’s finally gotten a correct diagnosis he’s in a program for autistic kids that teaches them how to do laundry and go to the grocery store along with the “three R’s” and he’s on some medications that help him and doing remarkably well.
I love my brother wholeheartedly: he’s funny and loving and wise in his own way, but I cannot help but think of how much easier his life would be, of how much less he would have had to struggle if he could have been treated earlier. Our struggles make us who we are but it’s so hard not to wish away the pain of people you love.
My brother is 20 and pretty severely autistic,the only thing I regret is how long it took and how hard my mother had to fight to get him diagnosed. She was told he had everything from ADHD to schizophrenia. He was on ritalin for a long time and it stunted his growth making it that much harder to fit in with his classmates. When he was 9 his teacher stuck him in the back of the classroom and ignored him completely. Now that he’s finally gotten a correct diagnosis he’s in a program for autistic kids that teaches them how to do laundry and go to the grocery store along with the “three R’s” and he’s on some medications that help him and doing remarkably well.
I love my brother wholeheartedly: he’s funny and loving and wise in his own way, but I cannot help but think of how much easier his life would be, of how much less he would have had to struggle if he could have been treated earlier. Our struggles make us who we are but it’s so hard not to wish away the pain of people you love.
These discussion are ALWAYS important. There are so many sides and opinions and emotions. Like Varda, I would take the Autism away in a heartbeat. My son is awesome, quirky and sweet BUT at nearly 7 years old does not utter a single word. We are still potty training. He can only play with toys if we sit with him and show him how and even then he has very little interest. He has to have a para with him all day at school in his inclusion classroom. he is mainstreamed for music and PE with his para modeling for him the whole way. Not really mainstreaming if you ask me. he can’t read, he can’t write. he can barely sit still long enough for a book to be read to him. He has to be forced to color a page in a coloring book or to do a 8 piece puzzle. he would rather run around jumping on the couch and off the furniture. Watch a movie? never.
The heartbreak is he was not born Autistic. He was developing on track and completely neurotypical UNTIL he was 15 months old and he had 4 vaccinations and the flu shot in one visit. That flu shot? was actually an adult flu shot “cut down” for babies. Obviously, genetically he is wired to not be able to handle all the toxins and dump them on his own.
He lost all his words, the ability to play with toys, his eye contact, playing patty cake, learning his ABCs, pointing to his body parts, sharing toys and everything else a 15 month old should be doing.
So yea, take it away, treat it, cure it, whatever. Communication..he has one sign and it’s universal for yes or I want or more. that’s it. It took over 4 months of ABA and $5k to get that. Insurance doesn’t cover autism therapies. Clearly, there is a need for these expensive therapies to just learn to function.
So to bag on AS? They are researching and working with legislation to mandate insurance coverage, reasearching causes, researching therapies. All in an effort to help kids function. We are going to participate in a genetic study that is based on kids like my son. Kids that were growing and learning fine and then BAM, ASD. Kids without anyone else in the family with ASD.
I want to talk to my son. I want him to tell me if he is sad, had a bad day or has a frickin’ headache.
I want him to care about his birthday, the tooth fairy, Halloween, Christmas…and anything else that kids care about.
The problem is there is definately something happening. The ASD rates are rapidly increasing not because of genetics or better diagnosing. its on the rise because of our environment and how toxic it is. We need vaccinations BUT we do not need to pump our babies full of it all at once. My friend on FB just said her NT 5 year got 6 vaxes in one visit! WHY? if you look at the CDC vax schedule, those 6 shots could have been spread out between ages 4-6. But please load her up all in one day.
So forgive me if I treat my son biomedicallly, de-toxing his body and ridding him of the metals that have damaged his brain. If we do all we can to help him talk or at least have some sort of communication. Call it whatever you want, but yeah, a cure or at least someway to stop this? just do it. The peditricians, CDC and pharmaceutical companies HATE moms like me. They hate Dr Andrew Wakefield and anyone else saying that my son’s type of Autism was preventable. because if I knew then what I know now? My son would not have all those shots in that terrible “well baby” visit. And maybe some autistic adults hate me too. It’s not my intention to offend. I am friends with several that understand where I am coming from and know the difference between born this way and injured.
There are too many kids with vaccine injuries with an ASD diagnosis.
Asker, I wanted to let you know that you are more than welcome to friend me on facebook: kerry ann butler I have a whole tribe of ASD moms and a private ASD board and we like to help new ASD moms all we can.
My 5yr old has SPD (sensory processing disorder). This is our 3rd diagnosis in 2yrs but I really feel like it’s “the one”. We unfortunately fit into that category of not quite qualifying for services but really needing some help that we cannot afford.
Having a child with an invisible disability is beyond frustrating at times. He is working way beyond his age academically but emotionally he is like a 2-3yr old. We don’t do meds for behavior control. We are anti processed foods & HFCS. We supplement with Omega 3 and use melatonin for sleep when needed. I am a mother of 4 biokids and 2 steps. I am often exhausted in all the usual ways but still am called to fight for my son’s rights in the classroom and the outside world. There is an epidemic and it is so important for people to understand more about asd and spd and everything between. My child is not a brat, he is not a baby and he does not need more discipline, nor does he need pity. What he needs is understanding and resources and legislation, and discussions like these are where all of that comes from.
My 5yr old has SPD (sensory processing disorder). This is our 3rd diagnosis in 2yrs but I really feel like it’s “the one”. We unfortunately fit into that category of not quite qualifying for services but really needing some help that we cannot afford.
Having a child with an invisible disability is beyond frustrating at times. He is working way beyond his age academically but emotionally he is like a 2-3yr old. We don’t do meds for behavior control. We are anti processed foods & HFCS. We supplement with Omega 3 and use melatonin for sleep when needed. I am a mother of 4 biokids and 2 steps. I am often exhausted in all the usual ways but still am called to fight for my son’s rights in the classroom and the outside world. There is an epidemic and it is so important for people to understand more about asd and spd and everything between. My child is not a brat, he is not a baby and he does not need more discipline, nor does he need pity. What he needs is understanding and resources and legislation, and discussions like these are where all of that comes from.
Well said. Pity is not worth it. And you’re absolutely right. You’ve described Ben very well. As I’ve said before other places, I haven’t discussed my son’s problems. That does not mean they do not exist. It can be exhausting and difficult and all kinds of bad things.
I’m so sorry you don’t qualify for services. That is beyond unfair and makes me want to punch things.
I too have a 5 year old son diagnosed with SPD. He was diagnosed at 2.5 and honestly we thought he was Autistic. The past 2.5 years have been spent fighting the school system and our insurance company to try and get him the services he needed. He wound up classified as preschool disabled through our public school system and received OT, PT and ST for the past 2.5 years. Well needless to say they “Mainstreamed” him for Kindergarten insisting that he is ready. He’s still receiving services but to a much lesser degree than before. I feel bad ever complaining because his disorder is not severe. I have two family members and a best friend who have children that are moderate to severe on the spectrum and I feel terribly guilty ever complaining or even talking about my son’s issues to them. I guess I just wanted to tell you that you’re not alone and I know how difficult it is.
Aww Becky, you got me crying again. I don’t have a special needs child, but i have spent most of my life as a teacher of special needs kids. I have learned from that experience that the most important thing is to accept each child as a person and to give them the tools, support and guidance so that they can make the most of their abilities. (not really different than what we do with ‘non special needs’ kids.) With the right support and structure, a lot of special needs children will blossom. In my opinion this has to be a collaborative effort between the medical profession (schools are not allowed to make a ‘medical’ diagnosis), the schools and the parents. We are such a long way from getting there, but at least there is discussion and if parents take the lead, there will be action. (one of the first laws in the 1970’s, which said students with disabilities are entitled to a public education was spurred on by parents).
As i said, you got me crying again….I remember most of my students with love, (some i loved as if they were my own). They gave me and the non disabled students so much….life lessons on empathy, respect, and acceptance of each other without judgement…. I gotta stop this crying…..
I’m feeling compelled to comment even though I don’t feel in the least qualified. I’m not a parent of a child with ASD or SPD. My daughter is an other-wise normal deaf child. As 6 years old she’s developmentally appropriate other than speech but she communicates effectively with her hands.
I feel like I should bow and humble myself in front of all of you strong, amazing women dealing with so much with so much honesty and love and strength and compassion.
I wish I could be there to help and hug and support all of you wonderful mothers.
I have nightmares about an autistic student I had. I had her for 2 years, first and second grade, and we can call her A. A.’s parents did not speak much English and were each working 2 jobs while trying to raise A. and her 4 siblings. My classroom was a “regular” classroom and A. spent the majority of the day in the special education room unless that teacher was absent, in which case she spent the whole day with me because she didn’t like new people. Anyway, A. did not have an aide because her parents did not know to demand one from our urban district. A. had an hour of speech and an hour of OT per week and many hours playing on the computer in the special ed. classroom. A. spoke, but much of what she said was unintelligible. A. gave hugs but she also looked for escape routes if you tried to get her to count. I’m going into this detail because I feel guilty. I think A. could have learned so much more if someone (like me) had fought to get her into a program for autistic kids or at least gotten her an aide. I tried to encourage her parents to do so but that was it. And meanwhile I got all this praise because I “put up” with her and brought her on field trips and taught my students to protect her instead of tease her, as if that wasn’t my job. I don’t know what my point is, other than what’s happening to autistic kids who don’t have parents who do all of the amazing things that you all do?
My heart breaks reading this. It brings me back… Jacob’s first ABA therapist was also a classroom teacher in an ABA autism classroom run by the NYC DOE in a very poor neighborhood in the city with a very challenged population. She would tell me heartbreaking stories of the kids in her classroom, which just didn’t have enough resources of any kind – not enough teachers, aides, supplies, support services (ST, OT, PT) to adequately serve these kids, whose parents didn’t know how to fight for them, didn’t know they could fight for them, and/or were too damaged/challenged themselves to do much of anything for their kids. Most of these kids had had no EI services, no pre-school and were just entering the system and getting any help at all at 5 or 6.
It makes me think there has to be a way we can change things to make sure ALL kids with special needs get the help they need and deserve, not just those with middle class parents or particularly feisty, wise & wily parents who know how to fight/work the system. I know that would require transforming our society from the ground up – but why not?
My heart goes out to the “newbie” parent. I remember how lost and scared I was when my son was diagnosed over 14 years ago. It does get better and don’t give up trying…even if the medical professionals tell you something won’t work. The best treatment we tried was the GF/CF diet and we saw results in my son’s language in three days. Of course, back then it was considered new-agey bullshit but thankfully we did not listen.
Thank you, Becky, for opening up this support opportunity. AS IF we didn’t have enough in common already, I am realizing our sons share the same name!
My oldest daughter has Aspergers which is on the Autistic Spectrum, and I wouldn’t change a thing about her. She is quirky. So what who isn’t? She has fits and meltdowns of epic proportions, meh we’ll deal with them as the come. She only allows people to hug or cuddle her when it’s on her terms (which is very seldom) That is the hardest part, but I manage. But people who don’t understand it will probably find many faults in her. Fuck them. My daughter is unique, she is quirky, and she could care less what you think. I wish I could be more like her in that way. I wish I could be everything I am, and think I’m the best, or not give a flying fuck what anyone thinks of me. Don’t get me wrong some people do hurt her feelings cause she doesn’t understand them. But the rest of the time she really doesn’t care. So to anyone who thinks she is weird or to “old” or not “normal” fuck off!!
To all the parents of newly diagnosed children on the spectrum two things 1-you are not alone 2-its not the end of the world but you are entitled to have a grieving progress. The 2nd is the most important because its something many parents either don’t allow themselves to feel or sit it it forever and don’t get to the “move forward” stage. You have to allow yourself to go through the emotional gauntlet that the diagnosis will bring. Allow yourself to feel to grieve to be angry to laugh to cry all of the emotions allow them, own them and then pull yourself up and advocate for your child.
I’m tired oh so tired. My daughter is on the spectrum. She’s functioning enough that after years of therapy inclusion and me the medical connections my mother’s ladder climbing have helped. She’s quirky, won’t hug me, i am seriously the bane of other parents because i’m forcing the school to enforce their anti-bullying policy. She’s the easy target because she’s awkward. My ex who sees her once a year has zero idea how to deal with her. I spent years with a family who refused to believe for years because she’s not like my profoundly autistic cousin and of course there’s the fact that she’s older, when children who were not on the severe end of the spectrum weren’t given anywhere near the services they needed because they were just slightly off.
But i stick with it. Even though i’m tired i do it. even though i realize she may or may not ever get married and give me grandchildren, that she will probably go to college a year or 2 later, that she may be able to hold down a job but might not be ready to move out, i’m ok. I’m not sad i’m accepting. I’m accepting that this little girl who i can count on one hand the number of times she’s hugged me knows that i do what it takes for her and that i’m proud of all her accomplishments past, present and future.
Autism is not curable and its not always manageable but its acceptance that’s needed.
LOVE this!!
Thank you, love!
Hey Aunt Becky, I think the question is invisible 🙂 I still like the answer though!
<3
Let’s blame John C. Mayer.
Becky,
My 4 year old son was diagnosed with autism 2 years ago and I have found the site Talk About Curing Autism to be so extremely resourceful. Check them out here: http://www.talkaboutcuringautism.org
PS ~ It was started by a couple of moms with autistic kids!
Oh and PSS ~ The daughter of one of the aut.is.m. s.pea.ks board members has said that even SHE is against them for what they do NOT do for autistic kids.
REALLY!?! WOW. Okay. Thanks for the tips on AS (heh) and I’m going to put together a resource page for autism on Band Back Together. I don’t have (shockingly) any autism posts yet.
This is some tricky shit, Becks. Of course your son is perfect, as is my daughter Hannah (judge for yourself on her videos on my blog) but would I change her having cerebral palsy? In a fucking New York minute. I love her strength and determination, I love her inner and outer beauty, I love seeing her joy at getting new skills, I love everything about her, but I would never have wanted her to work so hard at things that other kids get to do automatically, like stuff food in her mouth with her right hand. Or eat with a grilled cheese sandwich in one hand and an onion ring in the other. We’ll get there, because I am going to change her, but I’m doing everything in my power to help her change so she can be the most able she can be – the most capable of sucking the marrow from the bones of life. Not in pain because a crooked walk makes her joints pull out of alignment all over her body. My last post on my own blog is about my struggle to deal with how conflicted I feel right now – joy that my baby is doing so amazingly well, and horror that my baby experienced a stroke. Now realize, I am still in the grieving process, and not fully formed as the butterfly I will be. One day I might say I’m glad, but as of right now, no, officially not there yet. I smile and stay silent when people tell me “what doesn’t kill you makes you stronger” – she would have been strong anyway. I remember reading something written by a mother of an autistic child about her reaction to people saying it is just a bump on the road of life. Harrumph. I don’t find Hannah, or any child with any diability at all to be defective, or needing to be changed – the distinction is to give them the tools to do the most they can in life, and that means a fair bit of intervention. This distinction is the tricky part, I think those of us with special needs kids get a raw deal here. How do I teach this to others when I don’t understand it myself? When I rock my daughter to sleep I whisper in her ear that she is the perfect daughter for me, that she will only get stronger with time, that her right hand will become more agile and stronger, her right leg and foot will not let her down, and that I love her beyond words. Then I spend the entire day seeking every opportunity to incorporate that intervention in every day activities because what we do now at this age will pay the greatest benefits in the long run. I ask her to turn pages of the book with Righty, I force Righty to touch the textures on the touch and feel book we read, I drop by the park coming home from work to make her climb a lader to get the reward of going down the slide, when ladder climbing is my goal. I try to build bilateral skills in every activity, make her walk up and down hills and on uneven surfaces whenever possible, and buy toys that will stimulate skills as well as entertain. My PT says one day I’ll actually make her fall on purpose (I don’t know about that) and yet all the while, every goddamn day, I hope I’m not telling her in any way that she is wrong, that she is not good enough, that she needs to change. I try to put it to in the positive – Righty can help you carry more toys! Righty can help you give a hug! Put on your own socks! If you push with two hands you can steer the car better.
If any of the rest of you are struggling with this, maybe we can have a forum of support on Back Band Together. Perhaps this can be what I contribute? But first I need to get it, and people, I am struggling.
I love this post and I love this particular response for it’s honesty. My 2 sons have ADHD which is being well-controlled with medication. On my invisible “scale” of childhood disabilities, ADHD is very very minor. But it is real and it is very hard to describe. When I try to explain the disorder to other people, they look at me like I’m a moron who doesn’t know how to be a good parent. “Every kid acts like that. They just need more discipline.” Yes, my boys are absolutely perfect in my eyes. But I sure would love it if they didn’t have to struggle. I would love to not feed them their medication every morning. It’s a delicate balance.
I can’t imagine getting those awful responses. When autism is no longer “hot,” we parents of autistic kids are going to get similar responses. I know it.
It really is a delicate balance. I would love some of the things to change and be easier for my son. But I don’t believe that he is miserable as he is.
I too have a child with ADHD who was medicated for years and now that he is in 6th grade, has chosen to go off meds. It is a struggle- he’s quite disorganized, but I am trying to show him different ways to do things and provide him with an ultra- healthy diet so he can learn. I do get flack from his father that it is just lack of discipline- very frustrating.
@GingerB, I think you are getting it, though. Everyone pushes their kid towards success. You’re just having to do it earlier and harder and in ways you didn’t expect. Don’t think you’re not accepting your child as she is because you want her to succeed in life.
There are plenty of parents out there who would do this pushing because they think they can make their child not have the disability.
(Note: written from the point of view of someone who does not have a child with a disability (unless you count social awkwardness, and she isn’t even 4 yet) but who observes people and tries to determine their agendas.)
YES. That’s just it. Like their child is really just someone else inside, trying to get out.
Hannah is totally fucking perfect and she’s my hero. You know I love that girl to pieces.
I think that this is a great idea, Ging. A totally great idea. Post it over in Ask The Band.
We all struggle. I can’t talk about the ways I struggle on my own doorstep any more.
Would you consider writing about CP in a couple of posts? Maybe telling Hannah’s story? Could you help me put together a resource page for CP over at Band Back Together?
I’M SO NEEDY.
Someone you may want to contact about CP is my friend, Finn. She has an older child who had a stroke in utero which resulted in CP. I believe he’s in 5th grade now. She may have great insight for those of you dealing with this and also for you, Aunt Becky, if you start a resource page over at Band Back Together. Her blog is A Life Less Ordinary. I think she’s really awesome for a lot of different reasons.
Okay, my cold, dark heart just totally melted. (I don’t really have a heart, that’s a joke) As an Aunt of one autistic nephew and one nephew who was born with major heart problems, I have been not so much on the sidelines of children going through hell, fighting through serious challenges and getting to see them blossom and overcome. Dylan, my nephew who has autism is absolutely freakin awesome and I defy anyone to try to find a way to tell me otherwise without getting a beatdown. Blake, on the other hand, may or may not be the only 7 year old in the world who sounds like James Earl Jones, with giant blue eyes and the ability to work an entire room of adults like Bill Maher. Seriously, he is a comedian, but his humor borders on the inappropriate. (Not my fault, I swear) The heartbreaking moments of seeing Dylan’s frustration when he was unable to communicate his feeling’s to us have passed. The 4 operations necessary to repair Blake’s heart valves have come and gone, the 9 months of him having a thrach in passed slowly, but they passed and he has cool scars to show the other kids in school now. What we all learned is kids are tremendously resilient. Beacons of light. They rebound and teach us so much more than we know, if we are only smart enough to stop once in a while to let them. Hannah is amazing. Brilliant. Her light will continue to shine through. It will light the path.
Hannah is my homeslice. For serious. I love that girl. She’s my adopted niece.
I have to admit, it was hard for me to get through this post. My son also has CP. He will be 10 in November and he has came such a long way (he was diagnosed when he was under a year old). His frustrations break my heart. Fortunately, therapy helped SO much. Most people can’t even tell at a glance that he has CP. My son is perfect in every way, to me, but unfortunately, not to some people in this cruel world. I do the same things that you were mentioning. I tell him that with practice, his right side can function like his left, it’ll just be harder. I cry when I see him wanting to play baseball so bad, yet I know it would be a struggle for him because he would have to use two hands and run quickly. I see him get pissed when he can’t open his own drink because the cap is screwed on too tight. I showed him a video of Nick Vujicic and showed him that anything is possible if you put your mind to it. I want to punch other children in the face when they make fun of him. He gets so fucking discouraged and I hate that. I want to make the pain go away when he can’t sleep at night because his muscles hurt. I wish I had a magic wand to make it all better… I would gladly go through it for him if I could. I was trying to find a link to your blog, but didn’t see it. I’d like to read it.
Just kidding. Found the link. 🙂
Just in case you didnt know by now….. You are an incredibly fucking AWESOME Mom! With amazing kids. Not only Ben, they are all amazing! And screw anyone that has the nerve to say anything different!
Aw, thanks. I’m all tearful.
Let me just start by saying that I think you are awesome, and I agree with you 100% about the wrongness of folks who are all about the “cure” of autism and not listening to actual autistic people (and I have friends on the spectrum, too.) I believe deeply in the beauty and value of autistic people, wrote a post called “From Autist to Artist” about what a fine line exists there. I love my autistic son to pieces. I do not define him by his autism, I see the whole child, his person-ness, I totally get that.
But also? If I had a magic wand that would take away Jacob’s autism but not change the core of who he is, I would use it in a heartbeat. Or not even take it away, but just change/fix the part that of it that makes communication and language processing so damn hard for him? You bet I would.
You see, you and your son are some of the lucky ones. Do you know how lucky you are? How painful it is for me to read this?: “Because my son, as quirky and strange and goofy and wonderful as he is, well, he’s older now, and he’s been through all the therapies and the treatments and he’s in a regular classroom with no aides and so, I guess I did something right.”
Because my kid? Couldn’t survive in a typical classroom for 5 minutes. He would be destroyed, shredded, and he would likewise shred the classroom. My kid is not just goofy and strange and wonderful. I mean he is all that, but he also cannot tell us what he is thinking and feeling much of the time. Half of what he says is still scripted and echolalic. He still doesn’t understand so much of what goes on around him because his language processing is just do deeply impaired/impacted. And our world, our understanding of it? It is SO based on language.
And the absolutely most painful thing? He has no friends. Not a one. And he wants them so badly, is near desperate for friendship. But he doesn’t yet know how to be a friend. He is too loud, too intense, too in the face of anyone he approaches. He yells at them, he roars at them, he overwhelms them. They run away. My son does NOT know that “know that he is quirky” he just knows no one likes him, and it wounds him deeply.
And his twin brother, whom he loves so much, wants to be with and play with and talk to all the time? Hates him passionately and wishes he were dead. Repeats this desire regularly and loudly and says it would be better to have no brother at all than an Autistic one. My heart is broken daily, hourly, right now. These are not good times.
And it’s not like Jacob is not growing and changing daily, making amazing progress. He is. But he still sings, shouts, talks loudly, all day, all the time. It is an aural assault to be near him. And we live in a small apartment. And his brother wants a brother who can actually sit down and play with him. Who can play games, and understand the rules. Who doesn’t demand that the same thing be done over, and over and over again, who doesn’t take apart and break all his toys.
And one more thing. I am sure you are an amazing mother, but I am too. When you wrote: “…and so, I guess I did something right.” I am sure you were just being flip and funny, you were congratulating yourself, which you should. But for me it was a kick in the gut that took my breath away. You were telling me that my kid wasn’t where yours is because I’m doing it wrong, not doing enough. Because he is one of those whose kids will never in a million years be mainstreamed.
And I have given up my life for my kid. He has had every therapy imaginable, all the treatments. We give up things to be able to pay for them. I make special food for him, he takes 100 supplements a day. I work with him constantly, scaffold his interactions, take him everywhere in spite of how exhausting it is because I will not deny him the world. But all this cannot change his language processing challenges. That is an organic brain function.
You son can be mainstreamed because the language processing parts of his brain are not so mis-wired that he can have a conversation, have the (language based) abstraction of thought that allows him to know and appreciate his own quirkiness.
I am not saying you have NOT “done something right”, but just please acknowledge the huge piece of luck that is a part of this, too.
Oh Varda,
Of course your son isn’t more severe because you are a bad mother and my son isn’t less severe because I am a good mother. It’s not about that and I’m sorry that I made you feel badly. It is clear that you are a wonderful mother in an impossible situation and I am so very sorry for that.
That was a comment that I did make in a flip way and it wasn’t fair. Of course it wasn’t as an attack to anyone.
I haven’t talked about the more difficult parts of raising an autistic child which is by my own choice, and I don’t regret it.
Answering this question was extremely difficult for me. I didn’t want to badmouth my son knowing that some day, he will read this, and seeing me falling all over myself to apologize for something that he is not sorry for will wound him. That’s a line I walk.
Perhaps I shouldn’t have tried. Maybe I should have punted it over to Band Back Together and let the people over there do it. My perspective for autism is clearly from the lighter spectrum.
I was giving the asker my perspective. I do not know if I did justice to her question and I hope that I did.
And I’m sorry that in that, I hurt you. It was not my intention.
xo,
AB
And I am sorry I overreacted. I know you didn’t mean that you felt like a superior mother because your son was on the milder end of the spectrum. I’m just feeling especially vulnerable because of the crap time I’m having lately (on top of all the shit w/ my kids, we’re on deathwatch for my hospitalized mother-in-law right now.) And I think there’s some envy there, too. I know so much of my son’s wonderfulness is still locked inside him and I want it to come out so desperately. He would still be quirky, hell, he comes from a quirky family.
I’m glad you answered the question because we need to talk about all this stuff, and as much as possible. And it’s important that people with freshly diagnosed kids are hearing from those of us who are celebrating our children, because there is too much of the despair out there (I mean, I’m a Hopeful Parents writer, after all.)
Thank you for your response, and I am sorry if I made YOU feel bad. You didn’t hurt me, my life is hurting me right now.
And please do come visit my blog & read my “Autist to Artist” post. Its what I write when I am celebrating my wonderful child.
I cannot wait to read about your son. I clicked over earlier, but my daughter began chewing on my arm and I had to stop reading.
I was going to ask you if you’d considering writing or reposting some of your posts about autism on Band Back Together. I can clearly see by these responses that people need a place to talk about autism and I have the space on my group blog to do so. I’ve asked a few others to do so, and they are going to.
But you have a perspective that I think is amazing and I know people would benefit from having so many different perspectives in one place.
Absolutely no pressure whatsoever. Any time. Anywhere. And if it’s never, I totally get that, too.
Much love and I’m sorry I came across as smug. It was not an easy question to answer and frankly I don’t know that I answered it well. Honestly, I don’t know how to answer a question that has such an incredibly broad range. I can only give my own perspective and I didn’t want to scare the mother. Lord knows, it’s scary enough as a new diagnosis.
I really hope things improve soon. Life can be a shit sandwich sometimes. It’s been a shitty couple of weeks here, too. Looking for the sun. Hoping it’ll come out soon.
xo
I’m replying to what you wrote below me, but I guess we hit the “thread limit”
1. I would love to bring some of this to the Band Back Together site. Thank you for asking. I would have to start w/ re-posts because I am tapped out right now between trying to keep my own blog posty and my monthly obligation for Hopeful Parents (the 10th is coming up & I’m starting to stress). But also it feels like a good place for me to share when things feel too intense for my own site.
2. You really didn’t come off as smug, I was just being hopelessly over sensitive this AM, and I’m sorry you took the original post down,it had some valuable things to say. I hope my comments didn’t cause you to do that. Self censorship is never a good thing (unless you’re a total tool and your are NOT that in any way shape or form.)
xoxo right back at you.
I had NO idea that WordPress HAD a thread limit. That’s HILARIOUS. And awesome. I’m THRILLED that you agreed to post some of your stuff on BB2G. It’s a group blog, so whenever you have time (NO PRESSURE), just create a login and throw whatever you want up there. Throw it ALL up there for all I care. This post has illuminated to me, at least, that we all feel we need a space to really talk about autism and special needs parenting. That is important that I tap out everyone I can to help create it.
Autism has so many different forms and I want people to hear from all sorts of parents. That is what I would have wanted, had I needed support. That’s still what I want.
And no, you did not make me take down the post. I realized that what happened was people were starting to debate whether or not autism should be cured. It’s an interesting debate.
BUT, it had nothing to do with the person who needed our love and support right now and I was afraid with what the thread was turning into, she would feel worse rather than better.
Does that make sense? I was not upset. I was afraid SHE would be upset. I hated to think that someone who had reached out to me for help and guidance would turn to the comments and see the lot of us going around with each other. The discussion is great and I love to have it. It’s just not for HER.
BUT, it’s full of the win! I have tapped some help on Band Back Together now! YAY!
xoxo,
AB
Hey Aunt Becky – I totally agree about the US Autism and Asperger Association. I had never heard of Asperger’s before i read about it in Parade magazine when my older son was in second grade. That was 10 years ago. I knew my kid was different. He had every symptom of this thing no one else had ever heard of. His teachers had no idea. I had to go through years of trying to get him tested – we moved around a lot and each school system had different requirements for getting in the queue to be tested. Then if they found out we were moving within the year, they would ignore us until we left. – At any rate, now he’s a senior in high school. He has an A/B average and should receive a full ride scholarship to the college of his choice. He traveled to Japan last summer (without ME) as a People to People Student Ambassador. (My son is obsessed with Japan and all things Japanese). He has friends. Friends who realize what a wonderful amazing intelligent funny person he is, even though he’s hard to get to know. Friends who have helped him reach out socially. Friends who bolster his confidence in ways only friends can. (Moms can’t do everything for them, even though we wish we could.) My son is perfect the way he is. He doesn’t need to be cured of anything. He just needs the same thing all of us need – understanding.
EXACTLY. This made me cry, because I can see Ben in a couple of years and I hope he’s got the same sort of structure and situation.
I’m so happy he’s found his way. SO HAPPY. I’m all beaming and crying at the same time.
This is a topic I struggle with as well — I know that my son (4-year-old with Asperger) is at the higher-functioning end of the spectrum, so I think it’s easier for me to be all, “yay for neurodiversity.” I can only imagine that moms of children with more severe autism — whose children have never said “I love you, Mommy,” want to tell the neurodiversity folks to suck it.
Absolutely. And the people I talked to were clearly high functioning. Without any more information from the asker, I had to respond from my point of view. That’s the only one I have experience in. I cannot give prescriptive advice for anything else and I do not have experience in anything else.
I do not talk about autism very much here. I never really have. For me to open up this much about it was very hard, and already, I regret it.
I don’t think good discussion is ever regrettable! And I certainly didn’t mean my comment as a criticism of you or your response to the advice-seeker. I think a lot of parents of children on the spectrum struggle with this. Which is weird, given that it’s a moot point — none of us has that magic wand anyway.
It’s hard. I love my son the way he is. But I hate seeing him struggle.
Hugs.
Shoot! I forgot to mention that I’m sure The David Cook also loves our children the way they are. : )
Yes, absolutely. I do, too. I love my son dearly and it’s been hard. Wickedly hard. I don’t really talk about it and I never really have, but it’s been a difficult road. Incredibly so. I could get up and say how many things I have struggled with, but at this point, it doesn’t matter.
I never know quite what to say to someone who has gotten a new diagnosis. As ender above (who is an aspie and my VERY good friend) has said, there’s no universal answer as to what raising a child with autism is like. It’s like trying to tell someone who is having ANY child is like. It’s simply unexplainable.
I strongly caution anyone with this diagnosis to view their child as their disorder. No one is defined by one thing alone. I have brown hair. I am the adult child of two alcoholics. I am a survivor of abuse. I am also a Leo. These are parts of me. Not one of these things can define me entirely.
Does that make sense?
It’s hard to express my sorrow for this without feeling I am betraying my son and all of his wonderful bits. The pain I have experienced in raising him is my own. Not because of who he is. I know that you probably understand this.
I hate to think I hurt others by expressing this badly. Truthfully, I don’t know how to explain this.
RIGHT! I feel exactly the same way. My son’s Asperger is mild. He is only a half-step different from the “normal” kids. But that half-step caused problems with teachers and other kids every day. Because you don’t expect the half-step change, so you trip on it every damn time you walk that hallway. I’m not saying it wasn’t (isn’t) serious. It is, for me and for him and for everyone who had to deal with his issues in person and in public. But it is a completely different struggle and challenge that is carried by parents of more severe conditions. I bow to them.
As a parent of a child with a very serious issue (Mimi) and one with a mild issue (Ben) I understand both sides very much. I can discuss Mimi’s issues more easily. With Ben, it’s so hard to explain my feelings without feeling I am betraying an integral part of who he is.
Yes! I know exactly what you mean. My son is a diagnosed Aspie on the high end of the spectrum (he’s 12). He’s also ADD. It IS hard to talk about it, because it’s a part of them, IMHO.
First, I haven’t read all the comments. I will eventually, but it’s too much for me all at once, so I apologize if I repeat something someone else has said. I will say that as far as the cure debate goes, check out Elizabeth Moon’s The Speed of Dark novel. Her now-adult son has autism and this book is a fictional exploration of a near-future where there an experimental cure is discovered. It doesn’t really judge and it’s an amazing read. (She’s also on twitter @emoontx but doesn’t talk a ton about autism – I think she does that on one of her many blogs)
What makes an initial diagnosis of autism or asperger’s or “on the spectrum” so difficult is that it is such a broad spectrum that we really don’t much understand. There is everything from the completely non-communicative, to the savant, to the “weird” college professor. (One researcher estimated that as much as 80% of college professors would be considered on the spectrum … hence the weird social skills sometimes demonstrated by these smart folks.)
I started to delete this comment because I figured that I wasn’t really contributing anything to the conversation, but then I read a couple more comments and realized I was actually on to something, so I guess I’ll try to finish this.
I follow a lot of aspie folk on twitter (@enderFP) – one of my twitter lists is aspie/autist if you want to connect with other folks. One quote that keeps cycling through the spectrum folks really stands out: If you’ve met one person with autism, you’ve met one person with autism.
Even more than any other condition, autism is unique to that person. I often think that autism and the personality are so intertwined as to make it impossible to determine what quirks are personality and which are the effects of the autism.
To me, I think that all of these “new” learning disabilities and difficulties and ADHD and autism are all just showing how unique we all are and how much we as a society prefer conformity (by new I mean we’re only now recognizing them and trying to figure out how to help rather than any of them having suddenly sprung up out of nowhere). We all learn in different ways and have different strengths. Psychologist Howard Gardner theorizes that there are at least seven types of intelligence and that school systems (and most businesses) only value two of those, attempting to force everyone into those two little molds when we’re really so much more diverse than that.
And I guess what I’m saying here is that the challenge of raising any child is finding ways to celebrate those differences in ways that feel like celebrations to everyone … and still figure out how to co-exist and “conform” enough to find your own place in society. For someone with any kind of difference this becomes more of a challenge … but it doesn’t have to be all difficulty and stress.
Sorry, this is probably pretty disjointed – I blame the pain meds. But I couldn’t let this go without some kind of comment. Hope it’s been at least somewhat readable and at least somewhat helpful.
I was hoping you’d chime in. Thanks, dude.
My brother is 20 and pretty severely autistic,the only thing I regret is how long it took and how hard my mother had to fight to get him diagnosed. She was told he had everything from ADHD to schizophrenia. He was on ritalin for a long time and it stunted his growth making it that much harder to fit in with his classmates. When he was 9 his teacher stuck him in the back of the classroom and ignored him completely. Now that he’s finally gotten a correct diagnosis he’s in a program for autistic kids that teaches them how to do laundry and go to the grocery store along with the “three R’s” and he’s on some medications that help him and doing remarkably well.
I love my brother wholeheartedly: he’s funny and loving and wise in his own way, but I cannot help but think of how much easier his life would be, of how much less he would have had to struggle if he could have been treated earlier. Our struggles make us who we are but it’s so hard not to wish away the pain of people you love.
My brother is 20 and pretty severely autistic,the only thing I regret is how long it took and how hard my mother had to fight to get him diagnosed. She was told he had everything from ADHD to schizophrenia. He was on ritalin for a long time and it stunted his growth making it that much harder to fit in with his classmates. When he was 9 his teacher stuck him in the back of the classroom and ignored him completely. Now that he’s finally gotten a correct diagnosis he’s in a program for autistic kids that teaches them how to do laundry and go to the grocery store along with the “three R’s” and he’s on some medications that help him and doing remarkably well.
I love my brother wholeheartedly: he’s funny and loving and wise in his own way, but I cannot help but think of how much easier his life would be, of how much less he would have had to struggle if he could have been treated earlier. Our struggles make us who we are but it’s so hard not to wish away the pain of people you love.
These discussion are ALWAYS important. There are so many sides and opinions and emotions. Like Varda, I would take the Autism away in a heartbeat. My son is awesome, quirky and sweet BUT at nearly 7 years old does not utter a single word. We are still potty training. He can only play with toys if we sit with him and show him how and even then he has very little interest. He has to have a para with him all day at school in his inclusion classroom. he is mainstreamed for music and PE with his para modeling for him the whole way. Not really mainstreaming if you ask me. he can’t read, he can’t write. he can barely sit still long enough for a book to be read to him. He has to be forced to color a page in a coloring book or to do a 8 piece puzzle. he would rather run around jumping on the couch and off the furniture. Watch a movie? never.
The heartbreak is he was not born Autistic. He was developing on track and completely neurotypical UNTIL he was 15 months old and he had 4 vaccinations and the flu shot in one visit. That flu shot? was actually an adult flu shot “cut down” for babies. Obviously, genetically he is wired to not be able to handle all the toxins and dump them on his own.
He lost all his words, the ability to play with toys, his eye contact, playing patty cake, learning his ABCs, pointing to his body parts, sharing toys and everything else a 15 month old should be doing.
So yea, take it away, treat it, cure it, whatever. Communication..he has one sign and it’s universal for yes or I want or more. that’s it. It took over 4 months of ABA and $5k to get that. Insurance doesn’t cover autism therapies. Clearly, there is a need for these expensive therapies to just learn to function.
So to bag on AS? They are researching and working with legislation to mandate insurance coverage, reasearching causes, researching therapies. All in an effort to help kids function. We are going to participate in a genetic study that is based on kids like my son. Kids that were growing and learning fine and then BAM, ASD. Kids without anyone else in the family with ASD.
I want to talk to my son. I want him to tell me if he is sad, had a bad day or has a frickin’ headache.
I want him to care about his birthday, the tooth fairy, Halloween, Christmas…and anything else that kids care about.
The problem is there is definately something happening. The ASD rates are rapidly increasing not because of genetics or better diagnosing. its on the rise because of our environment and how toxic it is. We need vaccinations BUT we do not need to pump our babies full of it all at once. My friend on FB just said her NT 5 year got 6 vaxes in one visit! WHY? if you look at the CDC vax schedule, those 6 shots could have been spread out between ages 4-6. But please load her up all in one day.
So forgive me if I treat my son biomedicallly, de-toxing his body and ridding him of the metals that have damaged his brain. If we do all we can to help him talk or at least have some sort of communication. Call it whatever you want, but yeah, a cure or at least someway to stop this? just do it. The peditricians, CDC and pharmaceutical companies HATE moms like me. They hate Dr Andrew Wakefield and anyone else saying that my son’s type of Autism was preventable. because if I knew then what I know now? My son would not have all those shots in that terrible “well baby” visit. And maybe some autistic adults hate me too. It’s not my intention to offend. I am friends with several that understand where I am coming from and know the difference between born this way and injured.
There are too many kids with vaccine injuries with an ASD diagnosis.
Asker, I wanted to let you know that you are more than welcome to friend me on facebook: kerry ann butler I have a whole tribe of ASD moms and a private ASD board and we like to help new ASD moms all we can.
email me too if you’d like. HUGS!
I love you. Thank you.
My 5yr old has SPD (sensory processing disorder). This is our 3rd diagnosis in 2yrs but I really feel like it’s “the one”. We unfortunately fit into that category of not quite qualifying for services but really needing some help that we cannot afford.
Having a child with an invisible disability is beyond frustrating at times. He is working way beyond his age academically but emotionally he is like a 2-3yr old. We don’t do meds for behavior control. We are anti processed foods & HFCS. We supplement with Omega 3 and use melatonin for sleep when needed. I am a mother of 4 biokids and 2 steps. I am often exhausted in all the usual ways but still am called to fight for my son’s rights in the classroom and the outside world. There is an epidemic and it is so important for people to understand more about asd and spd and everything between. My child is not a brat, he is not a baby and he does not need more discipline, nor does he need pity. What he needs is understanding and resources and legislation, and discussions like these are where all of that comes from.
My 5yr old has SPD (sensory processing disorder). This is our 3rd diagnosis in 2yrs but I really feel like it’s “the one”. We unfortunately fit into that category of not quite qualifying for services but really needing some help that we cannot afford.
Having a child with an invisible disability is beyond frustrating at times. He is working way beyond his age academically but emotionally he is like a 2-3yr old. We don’t do meds for behavior control. We are anti processed foods & HFCS. We supplement with Omega 3 and use melatonin for sleep when needed. I am a mother of 4 biokids and 2 steps. I am often exhausted in all the usual ways but still am called to fight for my son’s rights in the classroom and the outside world. There is an epidemic and it is so important for people to understand more about asd and spd and everything between. My child is not a brat, he is not a baby and he does not need more discipline, nor does he need pity. What he needs is understanding and resources and legislation, and discussions like these are where all of that comes from.
Well said. Pity is not worth it. And you’re absolutely right. You’ve described Ben very well. As I’ve said before other places, I haven’t discussed my son’s problems. That does not mean they do not exist. It can be exhausting and difficult and all kinds of bad things.
I’m so sorry you don’t qualify for services. That is beyond unfair and makes me want to punch things.
Casey,
I too have a 5 year old son diagnosed with SPD. He was diagnosed at 2.5 and honestly we thought he was Autistic. The past 2.5 years have been spent fighting the school system and our insurance company to try and get him the services he needed. He wound up classified as preschool disabled through our public school system and received OT, PT and ST for the past 2.5 years. Well needless to say they “Mainstreamed” him for Kindergarten insisting that he is ready. He’s still receiving services but to a much lesser degree than before. I feel bad ever complaining because his disorder is not severe. I have two family members and a best friend who have children that are moderate to severe on the spectrum and I feel terribly guilty ever complaining or even talking about my son’s issues to them. I guess I just wanted to tell you that you’re not alone and I know how difficult it is.
Jen
Aww Becky, you got me crying again. I don’t have a special needs child, but i have spent most of my life as a teacher of special needs kids. I have learned from that experience that the most important thing is to accept each child as a person and to give them the tools, support and guidance so that they can make the most of their abilities. (not really different than what we do with ‘non special needs’ kids.) With the right support and structure, a lot of special needs children will blossom. In my opinion this has to be a collaborative effort between the medical profession (schools are not allowed to make a ‘medical’ diagnosis), the schools and the parents. We are such a long way from getting there, but at least there is discussion and if parents take the lead, there will be action. (one of the first laws in the 1970’s, which said students with disabilities are entitled to a public education was spurred on by parents).
As i said, you got me crying again….I remember most of my students with love, (some i loved as if they were my own). They gave me and the non disabled students so much….life lessons on empathy, respect, and acceptance of each other without judgement…. I gotta stop this crying…..
I’m feeling compelled to comment even though I don’t feel in the least qualified. I’m not a parent of a child with ASD or SPD. My daughter is an other-wise normal deaf child. As 6 years old she’s developmentally appropriate other than speech but she communicates effectively with her hands.
I feel like I should bow and humble myself in front of all of you strong, amazing women dealing with so much with so much honesty and love and strength and compassion.
I wish I could be there to help and hug and support all of you wonderful mothers.
I have nightmares about an autistic student I had. I had her for 2 years, first and second grade, and we can call her A. A.’s parents did not speak much English and were each working 2 jobs while trying to raise A. and her 4 siblings. My classroom was a “regular” classroom and A. spent the majority of the day in the special education room unless that teacher was absent, in which case she spent the whole day with me because she didn’t like new people. Anyway, A. did not have an aide because her parents did not know to demand one from our urban district. A. had an hour of speech and an hour of OT per week and many hours playing on the computer in the special ed. classroom. A. spoke, but much of what she said was unintelligible. A. gave hugs but she also looked for escape routes if you tried to get her to count. I’m going into this detail because I feel guilty. I think A. could have learned so much more if someone (like me) had fought to get her into a program for autistic kids or at least gotten her an aide. I tried to encourage her parents to do so but that was it. And meanwhile I got all this praise because I “put up” with her and brought her on field trips and taught my students to protect her instead of tease her, as if that wasn’t my job. I don’t know what my point is, other than what’s happening to autistic kids who don’t have parents who do all of the amazing things that you all do?
My heart breaks reading this. It brings me back… Jacob’s first ABA therapist was also a classroom teacher in an ABA autism classroom run by the NYC DOE in a very poor neighborhood in the city with a very challenged population. She would tell me heartbreaking stories of the kids in her classroom, which just didn’t have enough resources of any kind – not enough teachers, aides, supplies, support services (ST, OT, PT) to adequately serve these kids, whose parents didn’t know how to fight for them, didn’t know they could fight for them, and/or were too damaged/challenged themselves to do much of anything for their kids. Most of these kids had had no EI services, no pre-school and were just entering the system and getting any help at all at 5 or 6.
It makes me think there has to be a way we can change things to make sure ALL kids with special needs get the help they need and deserve, not just those with middle class parents or particularly feisty, wise & wily parents who know how to fight/work the system. I know that would require transforming our society from the ground up – but why not?
My heart goes out to the “newbie” parent. I remember how lost and scared I was when my son was diagnosed over 14 years ago. It does get better and don’t give up trying…even if the medical professionals tell you something won’t work. The best treatment we tried was the GF/CF diet and we saw results in my son’s language in three days. Of course, back then it was considered new-agey bullshit but thankfully we did not listen.
Thank you, Becky, for opening up this support opportunity. AS IF we didn’t have enough in common already, I am realizing our sons share the same name!
My oldest daughter has Aspergers which is on the Autistic Spectrum, and I wouldn’t change a thing about her. She is quirky. So what who isn’t? She has fits and meltdowns of epic proportions, meh we’ll deal with them as the come. She only allows people to hug or cuddle her when it’s on her terms (which is very seldom) That is the hardest part, but I manage. But people who don’t understand it will probably find many faults in her. Fuck them. My daughter is unique, she is quirky, and she could care less what you think. I wish I could be more like her in that way. I wish I could be everything I am, and think I’m the best, or not give a flying fuck what anyone thinks of me. Don’t get me wrong some people do hurt her feelings cause she doesn’t understand them. But the rest of the time she really doesn’t care. So to anyone who thinks she is weird or to “old” or not “normal” fuck off!!
To all the parents of newly diagnosed children on the spectrum two things 1-you are not alone 2-its not the end of the world but you are entitled to have a grieving progress. The 2nd is the most important because its something many parents either don’t allow themselves to feel or sit it it forever and don’t get to the “move forward” stage. You have to allow yourself to go through the emotional gauntlet that the diagnosis will bring. Allow yourself to feel to grieve to be angry to laugh to cry all of the emotions allow them, own them and then pull yourself up and advocate for your child.
I’m tired oh so tired. My daughter is on the spectrum. She’s functioning enough that after years of therapy inclusion and me the medical connections my mother’s ladder climbing have helped. She’s quirky, won’t hug me, i am seriously the bane of other parents because i’m forcing the school to enforce their anti-bullying policy. She’s the easy target because she’s awkward. My ex who sees her once a year has zero idea how to deal with her. I spent years with a family who refused to believe for years because she’s not like my profoundly autistic cousin and of course there’s the fact that she’s older, when children who were not on the severe end of the spectrum weren’t given anywhere near the services they needed because they were just slightly off.
But i stick with it. Even though i’m tired i do it. even though i realize she may or may not ever get married and give me grandchildren, that she will probably go to college a year or 2 later, that she may be able to hold down a job but might not be ready to move out, i’m ok. I’m not sad i’m accepting. I’m accepting that this little girl who i can count on one hand the number of times she’s hugged me knows that i do what it takes for her and that i’m proud of all her accomplishments past, present and future.
Autism is not curable and its not always manageable but its acceptance that’s needed.