4 Reasons Why New Autism Parents Should NOT Read My Blog & FB Page
September 16, 2014
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Now Reading: 4 Reasons Why New Autism Parents Should NOT Read My Blog & FB Page
September 16, 2014
(originally written & published on September 15, 2014)
I’ve been meaning to write a blog post like this for a long time.
And wifey’s been wanting me to write a post like this for a long time.
And as my Facebook page gets closer and closer to 100,000 likes I figure now is a good time.
Here’s the deal.
Not a day goes by where I don’t get an email or a message from one of y’all saying something like “my kid just got diagnosed with autism yesterday and I just found & started reading your blog today.”
And when I read stuff like that I cringe on the inside.
Why, you ask?
Because when my kid was first diagnosed I would not want to have read a blog like mine.
Why, you ask again?
Well there’s 4 reasons why…
4 Reasons Why New Autism Parents Should NOT Read My Blog /FB Page
REASON #1) You’re Reading The Story of a Really Low Functioning Autistic Kid
In many ways my kid is kinda like a worst-case scenario situation. First diagnosed, of course, with PDD-NOS before he was two years old. Then he made some nice progress only to have a late, huge, slow, RARE, unexplained regression to become a severely autistic nonverbal kid with classic autism.
Why would you new autism parents want to scare yourself shitless by reading my son’s scary story? His story is a rare occurrence and I have no answers as to what caused his late slow huge regression so I’ve got no wisdom to impart.
When your kid is first diagnosed you should read and seek out those hopeful stories. Miracles CAN happen. Kids do go from being “severe” at age 3 to mainstreamed by age 7.
I didn’t say cured. I said
There was 1 girl who was in Kyle’s class when he was ages 3-4. This was an all severe, all autism classroom. This was an intense ABA school. This girl was severely affected. She was in school with my Kyle for that 1 year, and then they went off to different schools.
But fast forward 7 years and we run into her and her folks a few times a year at the pool and she is very high functioning & in a typical classroom (and she looks at Kyle with that “what is wrong with that boy?” look)
My point being low functioning, non verbal kids sometimes do grow into being high functioning verbal kids. Those stories are out there! But, unfortunately, my blog doesn’t tell a story like that. My son’s story is not one of those stories. My son’s story is a worse case scenario story.
So, again, why would you, a new autism parent, want to read about that?
REASON #2) My Severely Autistic Son Now Also Has Severe Epilepsy
Talk about a worst-case scenario! Two years ago, at the age of nine, my non-verbal, severely autistic, worse case scenario kid started having seizures… and now he’s got full blown epilepsy. And a hard to control/treat form of epilepsy that’s resistant to medication.
So you can easily google it and find out that about a third of kids with autism develop epilepsy.
Those facts are out there…
So why would you, a new ASD parent, probably overwhelmed by the recent diagnosis of autism, want to read my blog/FB page and hear daily about my son’s seizures & epilepsy? Why put yourself through that? Isn’t autism enough to freak out about right now? I think so.
Besides, when it comes to the epilepsy, I got no prevention stories for you. I got no old blog posts that say do THIS and there’s less of a chance that your autistic kid gets epilepsy. (“oh if only we had done that”). I got no epilepsy prevention tips or tricks for you. There’s literally nothing you can do to prevent it. So new autism parents, why worry about it now? Why read about it now? Focus on autism.
REASON #3: We’ve Got No Autism Success Stories to Share With You
You’re reading the story of 2 parents who had our son try many of the different flavors of treatments and medications and therapy’s out there for autism. And he had little or no success or improvements with any of them.
I’ve written about this quite a bit. We did the GFCF diet. He did intense ABA. We gave him vitamin B12 injections. We rented a hyperbaric oxygen chamber (HBOT) for a month. And lots of other things along the way. And none of it worked. None of it made him less autistic. Or less severe. Or helped his speech. Or calmed his behaviors.
In fact during the time that we did some of this stuff (GFCF & B12 injections) was around the time that he slowly got worse… He became more severe.
Do I blame any of the therapies?
Do I regret trying any of them.
Not really. (Ok maybe the HBOT cuz it was a HUGE waste of money.
Do I think some of these therapies and treatments help other kids with autism.
But not with my kid.
So you’re not going to read happy success stories about the GFCF diet or ABA therapy by reading this blog.
And when my kid was first diagnosed I wouldn’t have wanted to read a blog post about all the things that didn’t work. I would want to have some hope.
And trying some of those things are truly a right of passage for autism parents in the year 2014.
I wouldn’t want a new autism parent to not try the GFCF diet due to reading my blog. You need that hope as a new autism parent. So don’t read my blog with no success stories!
REASON #4) My Blog Is More About Me Than My Son With Autism.
It’s all about me.
Somebody wrote a comment to this effect just yesterday.
Now I’ll say that this blog isn’t all about me but yes it is a lot about me.
And while I do talk about my son and his ups and downs extensively, the blog is a lot about how I deal with the double whammy of my son’s autism and epilepsy.
And if you read the page/blog long enough you’ll see that even though I’ve been living this autism lifestyle for 9 years and the epilepsy lifestyle for 2+ years I still have a hard time with things depending on the day.
I accepted my kid’s diagnoses very early on. I love him with every fiber of my being.
And it does get a little easier as the years go by…but you know what…I can honestly say that it’s not that much easier, at least for me.
I wrote a few years ago that not a day goes by that i don’t see a typical father & son interacting and it hurts.
And that’s still true. It doesn’t hurt as much as it did a few years back (thanks Wellbutrin!) but yes it still hurts.
I’m not sure I would’ve wanted to know all that when my kid was first diagnosed. So why would I read a blog about a depressed father who is always talking about himself & complaining about the hand he’s been dealt?
So there you go. 4 Reasons why new autism parents shouldn’t read my blog
And I’m being somewhat sarcastic / humorous with this post but I’m fairly serious. When I was a new Autism parent I truly would not have wanted to read a blog like this.
But you know when I did need a blog like mine? I needed a blog like this in 2011 when my son was 8 years old and in spite of all the work he put in and we put in over the 6+ years on the autism roller coaster he was still severe, still non verbal, still not potty trained and he was filled with rage.
And I was tired of 6 years of trying autism parent support groups and finding nobody with the same issues as us, nobody with a kid as low functioning as my son. Their problems with their autistic kids seemed trivial to me. “Echolalia? Repeating Dora lines all day? at least her kid can talk”. I’m not proud of this but thinking back that is the way I felt.
And Facebook wasn’t helping with all your old HS friends with typical kids posting beautiful family pics of their vacations & holiday dinners.
So back in 2011 I tried to find an online autism support group or blog or Facebook page that told anything close to our situation with our son.
I tried to find a place online where people talked about everything associated with severe autism, the good, the bad, and the poop/pee.
And all I could find were those happy blogs/pages telling success stories (that I recommend you autism parents read now).
Nowhere were people telling a story like my sons story or my story.
It was all sunshine & rainbows and “god wouldn’t give you more than you can handle” and “my 7 year old autistic kid just smeared poop on the wall, but I wouldn’t change him for the world”
Now again when I was a new autism parent I needed and sought out the sunshine & rainbows stuff (but not the god stuff or the change him for the world stuff)
But after 6+ years of living in the autism trenches I had enough and wanted to hear more about kids like my son and moms & dads like me.
I couldn’t find any so I started this Autism Daddy page & blog and hit the ground running posting daily about the craziness that was (is) our lives.
And slowly but surely hundreds, then thousands of moms & dads just like the wife and me came out of the shadows and told the funny, dirty underground stories about their severely autistic kids and we had our own little crazy stimmy quirky community.
And now that quirky little community is gonna hit 100,000 likes in the week or so!
So I’ll end it right back where I started it…
New autism parents please don’t read my blog. And I hope you never have to read my blog.
I hope your kid has a huge improvement with ABA or the GFCF diet and you never find yourself wanting to read a blog like mine.
However, if after a few years on the A Train, your ASD kid is having a rough time and you’ve been down in the dumps and tired of reading about all the kids who showed miraculous progress with _____ while your kid didn’t.
If that’s you after a couple of years on autism avenue then that’s when I invite you to pull up a bar stool and join the autism daddy community and jump in and read this blog from cover to cover and join my FB page and laugh and bitch and complain with other parents about our kids crazy stims and bizarre sleep habits and share stories about our kids pee and poop.
Until then new autism parents, after reading this post, stay away from this blog… And I hope for your sake and your kids sake that you never have to come back
That’s it. The end!
Love you all!
Autism Daddy Over & Out!
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).
32 People Replies to “4 Reasons Why New Autism Parents Should NOT Read My Blog & FB Page”
TRUTH, Autism Daddy.
Sincerely, Been there, done that Mom.
There's no such thing as severe autism, and there's no such thing as regressive autism. Kyle was probably mentally delayed too and probably has brain damage from quiet seizures long before anyone knew he had epilepsy.
I love your blog and since we have both high and low it works for me. How do we balance it? Why did the cosmic dice get such a craptastic roll with our family? Then I think we he may not be eating turkey but he is eating WITH us now and every once and a while he briefly sits in the moment so we accept that as his sister prattle on about her day and her gaming and such. That is our life stripped bare bones and at times it sucks big time. He also has partial complex seizures that are coming along more frequently. Will they evolve into more intense ones? They cant say for certain. You do well and I see your point but I am not too afraid of anything 🙂
We have a 12-year old son with severe regressive autism. 2012 was the worst year with his trying to self injure himself, trouble getting to sleep, and it has been a roller coaster. After comparing some autism books to our experiences with him over the years, my two hypotheses are: Allergies cause neurological inflammation that spreads throughout his body resulting in allergic migraines, allergic rhinitis, eczema & itching. And self injury is most likely to occur when he has an allergic migraine. He will say "hea" and point to his head. My mom said she gets allergic migraines from some fruits. Hypothesis #2: He struggles with overgrowth of candida yeast/fungus. All this due to intestinal compromise; overvaccination played key role.
Currently, we feed him homemade steamed kale soup (pulverized in blender with hot water added), with 1/2 pd. fried salmon, a little brown rice, peas & green beans given morning & night. Rest of day, we give him a little grass-fed beef, a little chicken, peas, green beans, little broccoli, some blueberries, a lot of water, etc.. Supplements: Carlson non-flavored cod-liver oil, 1/2 tsp. w/main meals, Kartzinel probiotic capsule spread throughout day, Kirkman everyday vitamin w/o A & D due to cod liver oil, a little Mg spread throughout day, but investigating calcium supplement as he reacted to one we got big time. He is consistently more aware, less injurious, and can string syllables together now in certain sentences, and uses iPad Touch Chat app for requesting. People think we're crazy to investigate his stool seeing undigested whole beans, although he doesn't do well with beans. Got him IgE blood tested this year; way more sensitive than skin tests and revealed a ton more food allergies than we knew about. Books: Intestinal Health through Diet by Elaine Gottschall, Healing the New Childhood Epidemics by Dr. Kenneth Bock, Healing & Preventing Autism by Dr. Kartzinel & Jenny McCarthy, Carly's Voice.
And one reason why a new autism parent should read it. You do present a worse case scenario. If there's a bad part to this, you've probably experienced it. If there's something that could be tried, you probably tried it. And if not, you know someone who has.
But the reason why people should read your blog is simple. You show that life still goes on. You relate that while your son is so very high needs, you do still find time for each other, and how to remember what fun is.
You show us that some of those negative feelings we all have from time to time are not shameful, they are normal, and even typical of autism parents. You tell us how we don't have to be superheros 24/7, you show us how to give ourselves permission to fail on occasion.
You remind us how to be human, and humane, and to appreciate the little things. My brother's son is becoming a chess whiz, and a math genius. My daughter can't tell the value of coins. But I try not to be bitter, to appreciate him for what he is, and her for what she is. They will never be alike, or even comparable, and that's okay.
You show us how to hope when it looks like there isn't any.
We're glad you write this.
I needed to find your blog right when I did – and it was recent. My daughter is 7 almost 8, low functioning non verbal not potty trained and regressing with track-able signs of bi polar-ism. I have not met, talked to, or read ANYTHING about GIRLS like her, but in searching I at found you. I am a single Mom, her father and aunt and siblings from her father are all on the spectrum, so I am the single person in her life that is neuro-typical. This is more of a problem than you think, because there is no one in MY life who looks at some of her behaviors and goes – that's not right, we need to focus on this 'little' thing or it will spiral. They just dont see it, and I feel so alone. I love her with all that I am, and am proud of her accomplishments and support her in her set backs. But it is nice to know – in a guilty perverse way – that she is not alone, and neither am I. Thank you for having your blog. *Found you via facebook*
I can truly understand what you are saying in this blog!! I am the grandmother of a 15 yr. old grandson who has autism and is non-verbal and only partially potty-trained and yet my daughter and I have learned to find the joy in the small things but I remember well (not fondly) the days of chasing the "cure"!!! My grandson now has a 5 yr. old brother without autism who made us realize we had to learn a new "normal"! LOL. I can NOW see that all the hopeful things people tell you in the beginning are just so they can be compassionate and they really don't know anything else to say if they haven't walked in your shoes!! But all that's ok now. I accept the awws and the prayers and everything that everybody offers and I'm grateful for all the things I've gained but it is refreshing to hear a voice who has experienced some of the same things we have and share it with us because you do have to learn to choose your battles and learn to embrace your reality with laughter!! Thanks so much Autism Daddy AND Mommy!!
Great to read your Blog!!!
I found your blog a good place to discuss Autism…
My son regressed as he got older. When he was 7 he said "I'm going to play football like dad did in high school". He's in high school instead of football, we go to the Lego store. The Doc said I should go to a game to help me move on. My husband did really well, I cried the whole time. I love your blog and if you wrote a book I'd be the first in line to buy it. I agree with TDowell your realism has helped me and for that I Thank You.
I'm a father of two special needs kids. One of them is autistic. When he was first diagnosed every blog I found seemed to be a mother saying she wouldn't change her child for anything. I would change my son if I could. I hated seeing people say that and wondered if I was wrong to feel that way. I was also filled with rage over the diagnosis. I was bitter and seething, resentful. I was sick to death of pictures of rainbows with the quote "God only gives you what you can handle". Someone recommended your blog to me. Yours was the only blog that wasn't blowing smoke up my A. Finally, I found someone who seemed to feel the same way I did. It made me feel less alone in this, and that helped a lot, even as a new autism parent. Your realism helped me deal with the diagnosis, happy pictures and silly quotes did not.
Some stories on that site are ones only members can read and that story about my hurt and how it was healed's one.
There could be some that never are that happy, too .Also, I wanted to say that hurt I mentioned was inside. It was from some words and a painful, to me situation. I tell about it on my blog, as part of my life story, which I wrote last winter and it's also on a story website.
I wonder if this blog might discourage someone whose kid wasn't happy. Some autistic kids are these smiling little kids until toddlers or somewhere from 5.5 to around 6. It can be the other way. They cry and tantrum as kids but become happier when older. I was a happy girl for my first 19.5 years and just after that I got hurt. But then, when a few months after I turned 21, my life was touched and I got back to happy. I'm 24, 25 in November. I have Asperger's, which is like mild autism with typical speech, for new readers info. I like to read about autistic kids.
Autism Daddy, I really value your posts because I know I can see an understanding that I cannot get anywhere else. When I tried to explain my feelings once to my sister, and the God mother of my autistic son, about an incident which deeply hurt my feelings regarding my son, she replied "you know it's not always about you." It crushed me, made me feel guilty for having feelings. But I can look to your writings and know that someone out there understands and it means so much to me.
Beautifully honest. I'm not gonna give you any crap like ' you were meant for this' or 'God chose to you to raise this special angel child'. You said exactly what we all feel- this is fucking BOLLOCKS, this isn't fair and we're mighty pissed off. Life is evil, actually. But I'm happy for Kyle that he has parents like you..really, really happy for him.
great post my daughter is low to medium functioning she can speak somewhat and doesn't tantrum as much as she used to she isstill self injurius shes 22 and is in a group homein our city things worked out better for her and us this way she has a life goes to parties goes places we could not manage to take her has friends etc we visit all the time Im so tired of reading about success stories but I guess in a way ours is one we were the pioneers Ill never forget the autistic only performance of lion king on broadway we went to I broke down crying when I heard all the kids whooping and hollering and not thinking we have to sit in the bck ready to make a quick exit there were quiet spaces experts on hand storyboards handed out it was an enormous step forward My husband and I were in tears
Yours was actually one of the first blogs I started reading after our DX. My son was already 7 so I was reading it more for your story as a parent more that the story of your son…like you said in #4. Most other blogs I had found at that point we either too religious or goody two shoes for me to relate to. You had swearing and sarcasm so I found my people.
Sometimes just reading about someone who understands, even if on a different level, is all new parents with a fresh diagnosis need. *I knew that what I was reading may not happen to my child as I scoured the internet. Other things I hoped would not, but didn't know if it would. Then there were things that I definitely knew would. I understand that not all fresh to Autism parents can differentiate, especially if previously not exposed to some understanding of Autism. I, fortunately, had some research exposer previous to my oldest son's diagnosis. A community, even of varying diagnosis's can help, and yes sometimes terrify. But I think you give such a fresh, real, honest perspective that *A LOT of Autism blogs/pages do not give. I have been through a lot where they sugar coat, they play to the emotions rather then the facts and understanding, etc. You at least are real about it and I think, though maybe their child won't be the same severity, they find comfort in your blog. I know I do. And my boys are moderate to high functioning.
On a sort of related note. .Check out new studies about Synaptic pruning and how it relates to children with Autism. I couldn't find the original article I read, but here is another about it. It makes so much sense. http://newsroom.cumc.columbia.edu/blog/2014/08/21/children-autism-extra-synapses-brain/
I have finally found a club that fits! LOL. My child is 19 ( so not new). He is non-verbal and severe (check). He started having seizures at age 13 (check). He was in every educational setting imaginable and I ended up homeschooling him. He had therapies that didn't achieve miracles, He has meds that are necessary, but not cures. I read all sorts of hopeful books and blogs in the early years. I don't think they were wrong, but our situation didn't turn out that way. However, my child has made positive gains-for him. He uses the bathroom, he doesn't chew shirts anymore, he doesn't get into things as much. His challenging behaviors are milder now. He can do some work on the computer. He is much like your son and shows no signs of wanting to communicate via device, but we are getting along day to day. Your blog helps me feel less solitary, and that is a blessing.
Love your blog! You verbalize exactly what I feel like most of the time. I do resent not being able to travel and go to movies as a family, can't include him in family weddings and events. Having to try and get babysitters all the freaking time if we want to do something. Being the only one making decisions about my son – my husband kind of sits back and doesn't help much. He's great with him and will watch him when I am out, but never wants to get a sitter thinks we should be responsible for our own kid – meanwhile our other child is missing out on fun experiences and me too! I love my son to death – but sometimes I hate him when he's pitching fits and screaming in public I just want to run screaming myself!
I love your posts, my situation is very similar to your family's including epilepsy and all but I find it hard to put in words. Knowing we're not alone, am not mad at having certain thoughts and wonder why nothing works for my 12 yr old….yes this blog has helped me a lot. If I read it in the beginning I would have thought well there are severe cases too, but not my kid…and here I am after epilepsy started, got a severely effected son. God Bless and keep writing to be our voice too!
Why do you think you have so many followers, AD? Because what you and your family goes through is real. Yes, I admit, when I first read your blog I was a bit depressed. But this is because I had been reading so many other blogs about the wonder of Autism. This was a great knee-jerk back into reality – as condescending as that may sound! I love your blog. I love the rawness of emotion and the realness of a hard situation. And, yes, I kinda love your family :).
I am Autistic. I am NOT new to your blog. Keep writing. It is great therapy for all of us.
Hi, I'm not new to a autism diagnosis… I am however new to a severe autism diagnosis. My oldest is high functioning, always has been, she does have ODD and SEVERE anxiety which affects her more than the autism ever did. (the Autism you see more when she's around other kids, and you cringe because you just want to step in and stop her from talking about the same thing to death, and boring the hell out of the other kids. lol) My youngest was diagnosed with Severe Autism last month. He's progressing though, and no one thinks that will stick. (I hope and pray it doesn't) he's got Limited speech (most of it is repetitive, things he hears others say, or things off tv, he does ask for milk and will say hi/bye) He graduated from Early intervention and is in preschool now, which is going as well as it can.
Your blog doesn't scare me. I find it interesting. It's nice to read about someone else's kid, someone else's life that is dealing with autism as well, (no matter how much worse he is than my kid(s) it still makes me feel less alone when I see there's other people out there that deal with the same kind of thoughts and feelings. The fear of what a severe autism diagnosis brings… Besides, without you I wouldn't have this nifty little parking permit that gets us the closer spots so when my son gets too big to fit in the shopping cart (and mind you he's 3 and 42inches tall and 36lbs.. so soon) and gets away from me in the parking lot, which I imagine he'll do, because he's strong and a serious runner.. he has less of a chance of getting ran down by someone. 🙂
I know that I would never have wanted to read this blog when I started on this journey (and mine is higher functioning). Part of the reason I have started blogging myself is that it is really hard to talk to your friends that have "normal" kids and sometimes you need to be able to verbally vomit on paper (or the net) and get out those feelings. Hiding them never helps. Please never stop writing your blog..because those of us on the path (even the ups and downs of it, further or not as far) need to be able to sit, to look at how you deal…and really to be reminded that our autistic kiddo is not the only one in this life we live, and to be able to share, laugh and cry together. Thank you for being the Autism Daddy Rock star that your are…It makes the rest of us not feel alone.
I understand why you feel this way but let me tell you why when we got our answer last November that our 10 year old was autistic I found confert knowing your page was there mind you I didnt start reading until about march My husband said to me in December I found this page about this father dealing with his sons autism he is way worse than kaleb but im not alone in how i feel about some of this for my husband he didnt feel quite so alone and suddnly he started dealing better with the autism than i could have ever dreamed because he was on bord with the serve adhd we where told to live with but i knew it was more and I was starting to get the man i fell in love with back that had been beat down by 10 1/2 years of knowing there is something wrong with ur child but u cant get any help because he didnt have the proper diginnoss the last year has been rough but with blogs like urs and others it makes things alittle easier just knowing its ok to feel the way we do on the really bad days
My son is high functioning autism has severe autistic behaviors. So yes he can talk but if is a lot like a 2-3 year old. He's 6 and in school. He does well at school by holding it all together for the day. We went to a fair on the weekend. Didn't even last 10 freakin minutes. I was upset and frustrated. We can't do happy family outings. I get upset when I see other having lovely family holidays or enjoying the local fair. I don't know if I will ever get that with him. He would be more than happy to never leave the house. Don't get me started on the food! So. Many. Rules. It drives me insane, and I mean that quite literally. Psych hospital? Been there. So yes he is verbal and high functioning but he is still very much autistic.
I know you have tried everything and are probably done trying any new things with the age of Kyle, but thought I would throw it out there for anyone else reading your blog. We just started Mendability (just google it or mendability.com) we have been doing it for 3 weeks and my Autistic nonverbal has need doing tons of new things, small things but things non the less. It has started to change our world and I want to shout it to the rooftops so every Autism family can check it out �� oh ya and we love your blog, a lot of days its just what we need!!
We have as well been doing Mendability with our son. Its proven to be a great program. Like you said, new things, small things but things non the less. Its better then nothing, and any slight changes in the good category is always welcome! I hope Mendability continues to help your child. .:0)
There are Parents out there like YOU that need to read your blog so they know you're not alone. I totally get what you're saying. My twins were low-mild at the age of 3– and now are high functioning. I write specifically about high functioning autism. I can't help Parents that are looking for kids w/ low-functioning. They need you- or other Parents that are sharing their stories. But you're right- it's a spectrum. Maybe we should put together a Autism Blog Directory of what/where you blog about on the spectrum. So Parents looking for stories like you- will come and get the help you need.
Once again Autism Daddy, you are spot on. I would have been scared to death if I'd found your blog first. My guy is 12 now and I think I've been reading your blog for about a year. I read it for a lot of reasons and one is to count my blessings. My kid is verbal but cannot have conversations. He will always need support and someone to keep him safe but I know I need to be very thankful. You have taught me that along with a couple of others. Thanks. Lisa from Quirks and Chaos
* clap * clap * clap * clap
I still think while everyone needs hope, that people need to be realistic. Send them to my blog, I have both good and bad. It's life with a kid with autism.