Now Reading: Living With An Alien… This is the autism that we are dealing with.

Living With An Alien… This is the autism that we are dealing with.

This past weekend was my “birthday weekend”.   I turned 42 years old on Sunday March
4th.  And we had a really nice weekend.
Saturday night we had my mom, sister, brother-in-law, and my
wife’s folks & sibs & their kids over for pizza and birthday cake.
And then on Sunday my sister-in-law and niece watched Kyle
all day at our house so the wife and I could stay overnight at a fancy hotel.
We had 28 hours of autism freedom. From 10am Sunday until we
picked him up from school at 2pm on Monday we were free from autism.  And the wife and I had a great time.  We know how lucky we are to have a family
that gets it.  And a family that is so
willing to step in and help when needed.
They are GREAT!
But that’s not what this post is about.
Today’s blog post is about my brain.  Having an autism free 28 hours didn’t stop my
brain.  Unfortunately my brain was not
autism free.  And random thoughts kept
popping in my head about how different our lives are than typical parents &
from what I can see other autism parents.
How sometimes it feels like the autism we are dealing with is unlike
anybody else’s autism.
I know, I know, there’s that saying “if you’ve met one
kid with autism then you’ve met one kid with autism” but I REALLY feel
that way.  I really feel sometimes like
we are not raising an autistic kid.
Sometimes it feels like we are raising an alien from another planet.
Here’s some random thoughts / examples that infiltrated my
brain this weekend.
At my pizza night birthday party on Saturday at around 8pm
Kyle made it be known
that he was DONE.  So
my wife and sister-in-law took him upstairs to attempt to get him to
sleep.  It took over an hour.  The party continued downstairs.  At around 9pm my wife & sis-in-law
rejoined the festivities, and they served cake & coffee and they sung me
Happy Birthday and I blew out my candles.
And then I realized that my son wasn’t there for that.  And it’s happened before…sticking to his
bedtime schedule is probably better for everyone involved… and it’s never
bothered me before.  And it didn’t really
bother me this time.  I just noticed it
this time.  And I noticed that no one
even said “aww Kyle’s not awake to help blow out the candles”.  It was just a given that he wasn’t
there.  And it stuck with me.  And it made me think that I have NO IDEA if
he knows what a birthday is or what it means or what it signifies.  I have no idea, but I seriously doubt
it…  This is the autism that we are
dealing with.
Then on Sunday morning when my wife gave me my birthday
cards & gift.  She gave me a card
from my son.  And she wrote it out.  In the old days we would at least attempt to
get Kyle to scribble or color something in each other’s cards.  But we haven’t done that in a few years.  Again it didn’t bother me as much as I
noticed it.  And again it made me realize
that my son probably has no idea why I was opening gifts.  This is the autism that we are dealing with.
Then, we are getting Kyle ready Sunday morning.  My sister-in-law & niece were coming to
take him off our hands at 10am to take him to his Sunday activities, I say to
the wife “did you tell him what’s going on today?”
We say that to each other often.  It’s kinda to remind ourselves that we should
tell our son about things, changes in the routine.  Something as HUGE as mom & dad going away
for a day and him staying with his aunt & cousin and we didn’t tell it to
him until 20 minutes before they arrived.
Meanwhile, there’s a suitcase being packed and meals being prepared in
advance for the king.
So my wife goes about explaining to Kyle what’s happening
today.  And as usual he seems oblivious
to what we are saying…just going about his business.  Is he getting it?  Does he understand?  Who the heck knows?!  It sure doesn’t seem like it.  His receptive language doesn’t seem that
great.  So we are not proud of it but
sometimes we forget to tell him what’s going on.  And we need that “do you tell him what’s
going on” reminder.  This is the
autism that we are dealing with.
Then when my sis-in-law shows up I hand her the 2 page
military style agenda of EXACTLY what to do & when …with all the vital
instructions of what to feed him, when, which meds, when, potty breaks every 30
minutes, etc, etc, etc.  And then they go
to leave.  And we are not going to see
our kid for 28 hours.  Does he get it?  Do we get extra big hugs?  Nope he gladly goes with his aunt & niece
and only when prompted will turn back to give us a half wave.  Would he gladly go off with anyone?  This is the autism that we are dealing with.
So all this was running thru my brain during our time
away….not ruining my stay…but just rolling around in my head.  How he’s like a little alien, just going thru
life, getting his point across sometimes, but most of the time going with the
flow.  We sometimes kid that our dog has
better receptive & expressive language that Kyle.  I know that sounds cruel, but it really is
true.  She knows when you are talking to
her.  She comes when you call her. etc,
etc.  And the bitch knows how to get her
point across.  When she has to go out or
she we are late with her supper she makes it known with her actions and her
voice.  Kyle could take a few lessons
from her.  This is the autism that we are
dealing with.
Anyway all this is rolling around in my head while
away.  And then we get home and the wife
goes to pick Kyle up from school.  She
calls me 15 minutes later to say “since you’re off today meet me at the
doctor’s office to get that blood work we’ve been putting off” and I say
“did he make a big fuss when he saw you, did he miss you?”  I don’t know why I ask that question cuz the
answer is almost always no or to save face something like “he seemed a
little happier than usual.”  This is
the autism that we are dealing with.
Then I meet her at the doctor’s office and the kid hasn’t
seen his dad in almost 30 hours and maybe he seemed a little happier than usual
to see me (but not really).  As we are
taking him up to the doctor’s office I say to the wife, “did you tell him
what’s going on?”
“Nope”  So I proceed to
try to explain why we are there and what’s gonna happen.
Anyway, that’s about it.
That’s all I got.  This is the
autism that we are dealing with.  There’s
a lot of things in this post that I’m not proud of, but it is REALITY in our
home.  This is the autism that we are
dealing with.
Oh, by the way, he did really good in the doctor’s office
when he got his blood taken…so maybe he got what I was saying there… but
who the F knows?!


The end….



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Written by

Frank 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” :-).

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45 People Replies to “Living With An Alien… This is the autism that we are dealing with.”

  1. It is so annoying when family members ask me, the mother of a 6 year old child with Autism, "What does he want?" when he is having a meltdown and I have no clue what to answer them. In my head I keep thinking had I known what he wanted he would have calmed down by now. Autism parents are not mind-readers! Your guess is as good as ours! 😛

  2. sasha

    I am the mother of a 23 year old asd son. I never see any posts of parents with adult asd children. I am still mad and have a difficult time accepting this life. I would like to know how others have learned to accept it for the rest of their life.

  3. Rick

    I often wonder the same thing about our oldest. It is kind of daunting to think about what kind of future care he's going to need. Sometimes he seems like he's making progress, but then we see how little he can do, or just the way he does things differently.

    He's nonverbal, but can make approxiamatley three distinct sounds he's 7. . Conversely our youngest of boys at 1-1/2 can make about five.

    he's toilet trained, but only just recently fullly so while our 2yr old just became fully potty trained at the same time.

    I often wonder just how much he can understand. It sometimes seems like his younger brother (6yrs) is the oldest because he's typical.

    My wife worries that as he gets older, he will be too much for her. I wonder what he actually learns in school. He seems to have an understanding for spelling and can answer simple questions using a device, but I have never heard him ask a question.

    He's asked for things, like a watch or tablet, but never a question, like "how are you?" I recent;y watched an epsiode of Vsauce where one of things they mentioned was that primates that have been taught to communicate can also answer questions, bu thto date, one has never asked a question.

    I often wonder what it would be like to grow up and see your brothers change, ie. begin talking, being treated differently, and to not be able to say anything about it. Is he disgruntled? Does he feel it's unfair? Does he even care?

    In short, I'm glad my wife turned me to reading your blogs. I feel like alot of the stuff you right about are some of the things running in my head. It feels great to just kind of verbalize and visualize it out loud, you know.

    Thank you.

  4. Hi AD. I have to say I love your blog. Its so refreshing and honest.

    I recently remember feeling this way with my son's birthday in July (he turned 3). He can't do crowds, even small ones, or loud noises or anything really associated with celebrating a birthday. So we did none of those things. And at the end of the day even though I knew that making a big deal about the day or having everyone sing happy birthday to him or making him open presents in front of people would have caused a meltdown, I felt so guilty that we hadn't done anything. You don't realize the things that you miss until they are happening I guess.

    Thanks again for your posts.

  5. Anonymous

    Thank you for sharing your feelings so openly and honestly!

    Know that your son in all likelihood understands quite a bit. Yes, always keep speaking with him as if he understands, even if you don't get the feedback.

    Somewhere deep inside, he does know, he does care, and he is happy to be near you. If his routine is more important for predictability and emotional stability than a moment of lights and cake, that doesn't make you any less in his eyes.

    I am autistic, my son is autistic, and I teach special education including autistics.

  6. You are lucky/blessed to have a support system .
    I maybe get help once every two months from my sister and that has only started recently .
    I'm a single parent , I'm impressed that you are one of the few men that actually stuck it out and goes the extra mile .
    My ex doesn't even pay child support he thinks it's a waste of money , no career ,no social life so I know how it feels to be pissed at autism and the way it interrupted my son's life . Speak your truth it's therapeutic for you and those of us who feel like we are the only one .

  7. I feel the same things from time to time. Our daughter is NT and is getting married in two weeks! Our son is autistic and will not be at the ceremony. No one blinks an eye when they hear this. He just isn't part of our family in that way. It's expected that he won't be at parties unless they are at our house. It's just our life.

  8. Anonymous

    Wow this post was awesome. It made me cry cause I have some of those same thoughts going through my head and my son is only about to be 3 and he was diagnosed with Autism and he is also non verbal and we are not sure how much he actually understands receptively. The hardest part is it is all unknown you never know what tomorrow holds for us. My biggest fear is will it get worst as he gets older and if so how will I deal with it. Thanks for writing this post you have touched my heart and I know that I am not alone on this journey. Keep writing you are saying things that most of us wish we had someone to talk to about our situations and who would understand and not think we are awful for being real and saying exactly what we are feeling.

  9. Pete in Wa.

    Man… we have an alien in our house! No one can imagine ('cept maybe some of you) what it is like to have to tape your child's arms down so he quits hitting his head… until he sees dad. I have to sleep with him, and if I move, he is UP and saying "want two hands taped". So… 6 A.M. is a big ordeal when it's time for me to go to work. We have three brilliant daughters, but the toll is maybe even greater on them. Life before autism now seems pretty idyllic. Thanks for your posts. You make changes in lives you probably aren't aware of. I rarely shared my life with autism (like it was something to be ashamed of). Now I post parts of his (and our) life on Facebook, and with great response. Thank you.

  10. Anonymous

    i've got two boys w/ like kyle and another whom is high-functioning. i recently came across this article which renewed my hope (as well, have you heard of The Son-Rise Program? husband and i are attending in june and going to give it our best shot!):

    1. Anonymous

      any successes you attribute to the program, jill? we've already had some progress from just what i know…..can't wait to learn more! taking my kid out of his full-time aba program this fall so i can work with him one-on-one at home.

    2. I attended The Son-Rise Program (nearly 2 years ago) and it was the BEST experience of my life. You will meet wonderful people…all people that are there for the same reason you are. We had 140 people there from 26 countries and a bond formed that still links many of us today. The instructors are fantastic. Enjoy every moment!
      Curious… Autism Daddy have you heard of or attended this program?

  11. Anonymous

    Don't you just wonder what the hell is going on in their heads?

  12. Anonymous

    Honesty is what makes us deal with our lives…you are one amongst many of us and we embrace you from a place of understanding. Touching and truthful post.

  13. ((hugs))

    This is the autism that I am dealing with over here too… It hurts…

    Hang in there and thank-you so much for being willing to share this. Although it saddens me in a sense to see someone else going through similar, your blog helps me feel not so alone.

  14. KCM

    Love you posts! And this one just as much as the others.We also are raising a 7 year old LFA little 'terror', as my partner calls him. His receptive language is actually quite good we've recently discovered and his use of words and vocabulary is growing as well. I would probably attribute it to his school – he attends a special needs school. They work on PECS, vocab and other bits and pieces of schooling but they are really focussing on getting him communicating as affectively as he can.
    He's stubborn, strong willed and although he has routines, we are very lucky that its not so stringent that surprises cant take place. He goes to school, he goes to his grandmother then comes home. He has dinner,plays and goes to bed. At weekends, its pretty much whatever we want as long as he eats (selective eater) and we have one respite night a week and the other set of grandparents take him for a few hours every weekend. Again, lucky to have the support!
    What I will say is, though, I never ever thought this was how my life was going to end up – Im his stepmother and he lives with us full time as his mother is overseas. He is a cool kid, hard to be around sometimes but then parenting is the hardest job to im finding!

  15. Anonymous

    Thank You , for echoing what my husband and I go through daily with our son who is 9 with severe autism. I love your honesty and since I found your blog via google look foward to your postings. They make me laugh, cry and smile.

  16. I get the dog thing. My kid is doing pretty well, but as a dog person, I get the dog thing. I don't think the truth is cruel. I mean, it is, but stating the truth isn't!

  17. Anonymous

    I applaud you for your honessty and thank you for letting us into your life.

  18. I have just recently started reading your writings. Love it. You're awesome. My son has Cerebral Palsy and global delays. Even though he was not diagnosed with Autism, he definitely has some traits. He is also 9 . He can walk with small braces, can talk, read, but boy, so many things are missing, especially socially. Does not understands basic concepts. BUT I always say that who says what normal is, who says what happiness is??? He seems much more happy than we, sad motherf***** are and we are "normal". So I think about this when I get sad.

  19. pjsmommy06

    Thank you, as always, for sharing. My little girl is on the high functioning end of the spectrum. She is verbal but has a seizure disorder and a very low IQ. Though she is not from The King's planet she so often feels "alien" to me. There are days that if we do not spend time with any of her typical friends I can almost pretend she is typical. Then other days she just seems so "autistic". I never know which girl she will be on any given day.

    I relate to you so well because, despite her higher level of functioning, my brain still doesn't turn off either if I get some time away. She has a schedule of meds and therapies and academics, nothing like Kyle's, yet I still have "the list" and my brain still has ASD rolling around in it for those hours of retreat.

    So for those of you with kiddos on the lower functioning end…my heart goes out to you. You are all rock stars and warriors! And to the person who kindly reminded us about communicating with our kids and not assuming they cannot hear us when they don't respond I thank you! I needed to hear that!

  20. Melanie

    Thank you for your blog, it's helpful to hear your honesty and helps me feel okay with being frankly just angry at autism. We've never known a life without it in our home with our son, but somedays it just gets overwhelming. And hearing another parent be honest about it is refreshing.

  21. We are dealing with very much the same, I've only recently found your blog but I am so pleased I did, I steer clear of so much 'autism' stuff online because it's just not about what we are dealing with and as time has gone on it's really unhelpful. So much you write about is very similar to what we experience, I am always thinking that our son's autism is not what anyone else has to deal with, I don't necessarily think we have it harder, we are just in a very small minority – our local autism services reflect that too. I'm at a point where I think the autism diagnosis does my sons a disservice because it puts them in a group where they don't fit. Thanks 🙂

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  23. Anonymous

    I felt like I was reading the story of my life. My son is 4 and "severely" autistic. He's non verbal, stares out of the window, hands ALWAYS in the pants…..etc

  24. I can't tell you enough how refreshing your blogs are…the honesty and frankness. I just love them. I look forward to your next post.

  25. Anonymous

    i know exactly what it feels like..i often tell my husband that i have had pets who were far too smarter than our son..we have decided not to have dogs as pets anymore because the difference would show up..and i know that we are not meaning to be cruel when we say that..I have been looking forward to all this stuff like enjoying each others birthday parties and going on trips,together when i have a child of my own..even before i got married and while i was getting treatment for sub fertility.but that is just what i am missing now..what a mockery..

  26. That is a lot of pain. My heart goes out to you all.

  27. Anonymous


  28. Anonymous

    Go ahead & bitch! We all need to. As a mental health professional & mother of autistic daughter, it's very hard to "shut it off" & get angry about the situation particularly when I have parents come in w/ their kid they want me to counsel & in my eyes the kid seems as normal as can be…the parents are the ones I question. I just got done walking in on our Queen in the tub with her fingers in her va-ja-jay. I tried to explain to her that she can only do that in private & only mommy, daddy, & grandma can "touch" her privates to wash her, etc. I worry all the time!!!

  29. Matto

    Reading your blog is like reading an echo of how our son was until recently. I distinctly remember thinking its easier with a dog because at least a dog seems to know you are demanding their attention, even if they don't know what you mean.
    My son was oblivious to me, and I remember I could always stand in front of him in between something he was looking at and he would look THROUGH me. AND I remember like you explaining things to him and wondering how I could ever know if he got it because there was never a sign or way to determine a difference from if I had said nothing.
    I sometimes had the thought in my head that he didn't actually seem to be 100% human, even though I loved him no less for thinking that.

    1. Matto

      I think 2 years of ABA and being maniacal about PECS (which has led to a lot of interaction and given him communication) has really helped, but thats just a guess, and he may just be developing as he's getting older.

      The reality is he's firmly in the LFA camp, being non-verbal and not toilet trained (he's 5) but I am extremely pleased when for example he comes into where I am on the computer, grabs my arm, wriggles onto my lap, looks into my eyes, smiles and headbutts me to get a playfight started, and then laughs his head off when I stick my knuckles in his ribs in return. Thats about a grazillion things he never used to do 🙂

    2. Ok, I'll bite. You said "until recently"

      So how has your son changed and what do you attribute the change to?

  30. Thank you for sharing YOUR truth…your story No worries…no judgement. I was away this weekend and my husband kept saying, "Why are you calling?" You're supposed to be resting. I did. But the worries rolling around in your head never go away.

    My kids are high-functioning, but still I look at my brothers (you know the one who was a pain in the ass growing up) and now he has these perfect kids. I can't help but be a little envious. And that sucks…but it's true.

  31. I will reassure you again, I get it, I really really get it…… :/ I would love to meet Kyle because like I've said before, when I read your blogs I am totally envisioning my son, that's how close on the spectrum they are. There is not a day that goes by that I tell my husband, "We are the only parents with a child on this part of the spectrum and some-days it just doesn't feel fair" in all honesty.
    So, I can just continue to say THANK YOU, because as I read each new blog I find strength and encouragement that my husband and I are not alone.

    1. Anonymous

      My 5 year old grandson is the same way. Not alone for sure. Day by day and love and patience and routines and being their voice. God Bless the children.

    2. same here for me and my sons

  32. Anonymous

    First, thank you Autism Daddy for posting the reality of your life, even when you're not proud of it. I am beginning to share my own (very different) personal journey on Facebook, and I am taking lessons from your posts on how to do it 😉

    Second, please please please try HARD to talk to Kyle like he DOES hear everything you are saying. EVERYTHING. ALL the time. Even parents of 'typical' children forget that and will say things within earshot that they figure their kids aren';t listening to. The big difference is that those parents usually KNOW it lateron when their kids repeat it out loud in church or whatever; while you and your wife may never know how what you say affects your son.

    Third, I also want to clarify why I feel like I can give you this advise: I have, as one interesting side-effect of my particular disorder, problems with periods of what could pass as catatonia. I will go into usually depression-related 'trances' where I cannot speak or move. People, even my husband and son, assume they 'can't reach me' when I'm like that. But the painful truth is, I DO hear them. I am simply unable to respond, and sometimes unable to process anything until after the trance-state has passed. Even after processing, I often am unable to directly express how I felt about what was said and done while I was in that state. So, that's my two cents, for whatever it's worth to you, and any of your readers. Always assume they are reading you loud and clear- if not your words, then your meaning, if not your meaning, then your tone; if nothing else, then your energy/aura/vibe whatever.
    Respectfully, Jen Olson

    1. ((hugs)) Jen. I used to struggle with those as well so I know all too well what that is like… (I still do from time to time if I am not careful enough about my energy level and health)

      Thanks for sharing.

    2. Wow Jen, wow…

      What is your disorder? If you don't mind me asking…

  33. Anonymous

    I totally understand now. I've read so many of your posts. I always have said before, WHY be angry about it. WHY? My child's a blessing, and you don't have to look hard to find someone that has it way harder than i ever dreamed. But yesterday, I totally went through my feelings and thoughts of anger!!! Took my son to the grocery store, and we went through the same old thing…running down the aisles, hollering, trying to talk to everybody, touching EVERYTHING, the stares. My thoughts went to you and how angry you seem sometimes (hope I dont offend you). I was so unbelievably pissed yesterday. Those thoughts of WHY CAN HE NOT JUST BE NORMAL. WHY CAN WE NOT JUST BE A NORMAL FAMILY. WHY ME. WHY HIM. I totally get it now. And for the first time, i allowed myself to get pissed off. Felt pretty damned good actually.

    But just know that you are an AWESOME dad!!! Don't ever feel guilty for being mad. I feel sorry that i judged you. It honestly was a release for me. Sat in my bathroom when i got home for an hour and cried. Think i'll get mad more often. Lol.

    Anyhow, love your posts. Keep on keeping on.

    1. Welcome to the dark side. Lol. 🙂

      It feels good to get mad once in awhile doesn't it?

  34. Anonymous

    you will never know how much your posts mean to me 🙂 you and the wife are awesome my grandson is autistic high functioning but defiinatly challenging keep up the good work and bless you both

  35. the part that resonates the most with me is being "autism free" for however long she is spending time with someone else. I don't get it often, as like you mentioned, but when you do, your own brain is not autism free. my girl may not be like the King but, I hear ya, AD, I hear ya….

  36. Mac

    All I can say is, I know.