(ORIGINALLY WRITTEN & PUBLISHED ON TUESDAY MARCH 6, 2012)
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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View Comments
All I can say is, I know.
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....
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
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.
Welcome to the dark side. Lol. :-)
It feels good to get mad once in awhile doesn't it?
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
Wow Jen, wow...
What is your disorder? If you don't mind me asking...
((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.
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.
same here for me and my sons
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.
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.
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.
Ok, I'll bite. You said "until recently"
So how has your son changed and what do you attribute the change to?
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 :-)
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!!!
WOW!!!!!!!!!!! I CANT EVEN BEGIN TO EXPLAIN TO YOU HOW MUCH THIS SOUNDS LIKE MY LIFE! ALOT OF THESE SAME QUESTIONS HAVE WENT THROUGH MY HEAD MORE THAN ONCE. AUTISM IS SUCH A HARD THING TO DEAL WITH. I WANNA THANK YOU FOR POSTING THIS B/C IT HELPED ME REALIZE THAT I AM NOT THE ONLY PARENT TO DEAL WITH THIS!GUESS I AM ONLY HUMAN AND ITS NORMAL TO FEEL THE WAY I DO SOMETHING,AGAIN THANK YOU!