January 22, 2025 • 32 mins
This episode recounts our personal experience navigating Jacob's autism evaluation at 16 years old, detailing the process, insights, and outcomes that emerged from it. We explore key findings, discuss challenges within family dynamics, and share humorous anecdotes that highlight the unique aspects of parenting in the context of severe autism.
• Discussion of the journey to find an appropriate evaluation center
• Personal reflections on Jacob's evaluations and challenges faced
• Overview of the Vineland and CARS assessment results
• Insight into therapy recommendations and family dynamics
• Touching stories about Jacob's understanding of family roles
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Shannon Chamberlin (00:18):
Hello and welcome to the Parenting Severe
Autism Podcast.
I am your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
Please remember to visit psa.
buzzsprout.
com if you would like to send meany text messages or check out
any of my links, and, of course,you can always support the
podcast by clicking on any ofthe buttons on your media player
(00:39):
for supporting this podcast.
In this episode I'm going todetail our most recent
experience with getting our sonevaluated, and it was when he
was 16.
He's 24 now.
It was much different from theoriginal evaluation.
I've also got a couple of cutelittle stories that I'd like to
share another little familyincident.
So here we go.
This is out of chronologicalorder, as I've mentioned before,
(01:03):
but I really wanted to get intothe experience.
In case anyone out there issearching for services for their
child and if you don't knowwhat to expect, this might help
you a little bit.
It also, I think, offers a lotof insight into our son's
condition, since they are alldifferent.
This is going to be a lot ofnumbers and rating scales and
(01:24):
other specifics that wereinvolved in this evaluation.
He actually didn't even getevaluated until he was back in
school.
Jacob never had access toservices while he was being
homeschooled and non-schoolednot these types of services.
I did find him other things toget involved in which I'll get
into in other episodes.
Find him other things to getinvolved in which I'll get into
(01:46):
in other episodes, but I reallywanted to focus on this just to
get this out of the way and helpyou understand his level of
autism.
Once we finally did find thisplace it's in Wisconsin.
It's called Caravel AutismHealth.
It's actually for autism and Iwas delighted to find this in
the first place.
They wanted to send us first toa psychologist near our home to
get him evaluated and see if heeven qualified to go to
(02:09):
Caravelle.
So we had this appointment witha very nice lady.
She said this was going to takeabout 45 minutes to an hour to
get him evaluated in her office.
So the three of us went there.
We were very nervous becauseJacob understandably does not
cope well with people talkingabout him in front of him and we
have made it a rule that thisis not allowed.
(02:31):
But it went really well and shedid not disrespect his needs in
any way.
It most certainly did not take45 minutes.
Apparently, our child is soautistic that we never fill the
time slot that people schedulefor us in order to evaluate him.
We were in with her forprobably 10 to 15 minutes and
there was another time, before Icame around, where my spouse
(02:54):
had to bring Jacob in for anevaluation to try to get him on
Social Security disabilityincome and the man said that he
needed to speak with Jacob aloneand it was just going to take a
few minutes.
So my spouse said, okay, havefun with that.
And then within less than 30seconds the guy was like, okay,
everything's fine, let's juststop this.
Right now he definitely isdisabled.
(03:16):
So it was kind of like that,you know.
She said she wanted to talk tohim for five or 10 minutes and
we said okay.
And then as soon as we sat downshe came back out and she's
like okay, we're good, come onback in.
So he got his evaluation fromher and it definitely qualified
him to have an appointment atCaravelle.
I cannot say enough good aboutthis autism therapy facility.
(03:37):
We were so blessed to have beenin Wisconsin and I am really
sad that we had to leave becausethe services, once they kicked
in Jacob, was just set up.
It was so good.
All kinds of good stuff wascoming down the pipeline for him
and we had to leave it allbehind.
Anyway, I want to tell you theresults and how this whole thing
went.
So we went into kind of a bigplayroom, two or three
(04:00):
clinicians were observing ourchild and we tried to get him to
play with the stuff that was inthere.
He's mostly concerned with justmaking sure that we know he's
there and they tried to talk tous.
We did not talk about him in away that he would know, because
I had already told them we don'ttalk about him in front of him.
You'll have to take us outsideinto a different room if you
(04:21):
want us to talk about him, butthey did their evaluations just
sitting there.
We were there for about threehours just because there were so
many different areas in whichthey needed to test him for the
services that they were able toprovide, so that was the longest
ever.
I'd like to read some of thispsychological evaluation to you.
(04:41):
He was rated on two differentscales and I'm going to explain
what those are in case you arenot familiar.
It seems like everyone I'vetalked to has dealt with a
different method of rating or adifferent rating scale.
Everyone's got different ideasof how autism is evaluated, so
this is what we went through.
It first starts out Jacob wasat the time a 16-year and
(05:04):
5-month-old young man.
He has lived in this currenthouse in Wisconsin for four
years.
He currently attends ninthgrade at the high school on
Monday, Tuesday, thursday andFriday from 8 am until 11 am.
Quick note on that we had tocreate this schedule for him
because, although he indicatedat this time that he was ready
to try to go back to school, welearned this time that he was
ready to try to go back toschool.
(05:25):
We learned very quickly that hecould not handle full days and
he could not handle five days aweek, even with short days.
So this was a very customizedschedule and it resulted in him
not receiving services.
So it goes on to say hecurrently does not receive any
services while at school, but hedoes have an IEP.
(05:46):
So already you know that sucksright.
So they went on to detail hisfamily health history and it
says he does not engage inreciprocal conversations, which
was observed during theappointment.
It was reported that hetypically requests, using words
and phrases instead of pointing,I guess.
So it's usually we have to saywhat do you want and then we
(06:08):
have to say I want.
And then he'll say I wantwhatever.
But he's not really that goodat that anymore.
Anyway, after the family medicalhistory they went into sensory
and tolerance report and theysaid his hearing was fine.
He's sensitive to loud noisesand thunder.
His vision is intact.
He has really really greatvision.
It's overly perfect.
(06:29):
He does stare at mirrors forextended periods of time.
Olfactory senses appear to benormal.
He's sensitive to certaintastes and textures and, it was
reported, he is a good eater andsits for the duration of meals.
In the past he has beensensitive to tags within his
clothing and he will not wearclothes that are too snug.
After that it goes intoexecutive functioning.
(06:49):
Jacob has a difficult timeunderstanding cause and effect
and his thought process isdisorganized and confused.
Jacob does get easilyoverwhelmed in social situations
.
And then they go into theresults of the testing.
In the first set of resultsthey use the Vineland Adaptive
Behavior Scales, second edition.
They say that Jacob hadCommunication, daily Living
(07:12):
Skills and SocializationStandard scores of 47, 48, and
48, respectively.
He had an Adaptive BehaviorComposite of 47.
Jacob's Communication, dailyliving skills, socialization and
adaptive behavior composite areall in the low level.
Now just to give you an idea,here in the Vineland rating
(07:35):
scale could be Vineland I don'tknow it, just it's spelled
Vineland In the Vineland ratingscale.
These are the categories From 0to 17 is average, from 18 to 20
is elevated and any score 21and over equals clinically
significant indicating need fortreatment intervention.
Again, he scored 47, 48, and 48, and his adaptive behavior
(07:57):
composite is 47.
So he is definitely in theclinically significant
indicating need for treatmentintervention.
To me that sounded like anemergency.
It sounded so bad.
I didn't even realize that hewas like I said, this was all I
ever knew and I didn't realizethat he was so, so autistic.
(08:18):
I didn't realize.
Anyway, the next rating scaleis the Childhood Autism Rating
Scale, otherwise known as CARSC-A-R-S second edition.
This was also administered onthe same date.
Jacob had a total score of 42.5, placing him in the severe
symptoms of autism spectrumdisorder range.
So the CARS rating scale isfrom 15 to 60.
(08:42):
Any score below 30 isnon-autistic, any score from 30
to 36.5 is mild to moderate andany score from 37 to 60
indicates severe.
So again on the CARS scale, heplaced 42.5, so he is in the
severe range for that.
This report goes on to say thatthe pediatric developmental
(09:03):
screener was administered and hehad a total of 14 false
responses.
False responses over five for achild three years and older are
usually suggestive of an autismspectrum disorder and that
further testing is warranted.
So his final diagnosis wasautism spectrum disorder,
needing very substantial supportfor social communication and
(09:24):
restrictive, repetitivebehaviors.
Summary and recommendations.
Jacob is a 16-year-old young manwho was brought in by his
parents on this date for apsychological evaluation.
He did show obvious signs ofautism throughout the session
today.
Jacob is very appropriate forinclusion in an intensive
behavioral treatment program forautism and they recommended to
(09:45):
start with 20 to 25 hours ofintensive applied behavioral
analysis treatment each week andwithin the first two weeks they
asked us to go to 40 to 45hours a week.
Yeah, they did this.
Therapy was in home, which wasgreat because we lived about an
hour from anything.
Really, they ended up comingright after school, so he would
(10:06):
get out of school school at 11and they would get there around
11, 30 or noon while he washaving his lunch and they would
therapy him all the way up untilseven o'clock at night Some
days.
I couldn't take it and I wasjust like, look, we can't do
this.
We never did put him in a 40hour a week because I couldn't
take it, because it was all inthe same house.
When they came to the house, thefirst two visits were a
(10:29):
nightmare because they allowedhim to just be as autistic as he
wanted to be and I mean this isnot shit that I allow in my
house.
You know, these are behaviors,not actual autism.
So in our book here at home webelieve that behaviors and it's
not that we made this up on ourown we did have help, we did
(10:50):
have advice and intervention andprofessional opinions and all
kinds of stuff like that, rightbut the bottom line is that
autism is a disability andbehaviors are controllable.
Behaviors 90% of the time are achoice.
Controllable Behaviors 90% ofthe time are a choice.
And he was able to choose tobehave the worst way possible
while these women were in ourhouse.
(11:11):
He had two to three women at atime on him doing play therapy
and it was really good for him.
But those first couple ofvisits were terrible and I
finally asked him like, hey,look, this is not allowed in my
home.
He cannot behave like this.
Why are you, what are you doing?
Why are you allowing him toscream and abuse you and abuse
himself and abuse the house?
This is not how he's allowed tobehave in here.
(11:32):
And they said, oh, we justassumed that this was normal and
we were just letting him be himLike, no, no, this is not
normal, this is not allowed.
A couple other things I wantedto mention that I actually
didn't have written down, butnow that I'm thinking of it,
they had us fill out a bunch ofpaperwork beforehand and I had
to tell them everything that wedo and do not do for him, and I
(11:54):
told them about having to puthim outside.
I told them about some of myother types of just resets for
him.
You know they're just sensoryresets and I didn't even know
that I just I just didn't knowwhat else to do and I did what
made sense to me and I told themabout all these things, which I
will detail in many laterepisodes, I'm sure.
But what was really nice for meto learn from this was that I
(12:16):
was doing everything right.
They had no suggestions for meas a parent to help make my life
easier with my son, becauseeverything that they were going
to suggest that's on theirnormal list.
I was already doing.
Remember that, because youmight get there too.
Once I learned that everythingI'm doing is actually on the
list of recommended behaviorsfor parents to do for their
(12:37):
children, I felt so much moreconfident and so much less like
an asshole myself.
I thought, you know, sometimeslike geez, I suck at this mom
stuff.
I don't know what to do.
Yay, so it was a bit of agrueling process.
Again, nobody likes havingtheir life picked apart or their
son picked apart or anythinglike that, but it was so worth
(13:00):
it.
He got what he needed.
They were able to coordinatecare with the medical center
that we took him to and Imentioned he never did get to
see an actual doctor.
So they coordinated care withthe medical clinic where the
nurse practitioner was that healways saw that pretended that
the doctor was out.
But yeah, they were reallygreat, really easy to work with.
Between that and then the CPCenter and then the autism
(13:22):
program that was the non-profitand school.
We had a very busy autism life.
So now that that's out of theway.
If you have any questions,comments or anything else, do
you know you're able to actuallysend me a text message.
Now, if you're on my Buzzsprouthosting site, which is
psabuzzsproutcom, there's alittle section called fan mail.
(13:43):
I don't know if you can get itright from your player on your
device or not, I'm really notfamiliar, but I know that I have
it.
I turned it on.
There's been a recentdevelopment with family.
If you heard the episodes withmy spouse just a little while
ago when I interviewed him, onething that he mentioned, that
really hit home for me, eventhough I live it, you know, to
(14:03):
hear him say it, it reallyaffected me.
He said that people treat himlike he's brain dead.
You remember that.
Well, I want to speak to thatfor just a moment, because
things keep happening.
You know, people just keepdoing things.
We have had to put padlocks oneverything and I haven't told
you all this stuff because I'm,like I said, I'm trying to go in
chronological order but we kindof live like we're in prison
(14:26):
here.
I did mention a little aboutthat when I was talking about
him eloping because I wasn'table to chase him because
everything was locked down.
Everything is padlocked andthere's a reason we either don't
want him going in here or wedon't want him going out of here
.
The family doesn't see theurgency or importance of locking
them, and what irritates me isthat they think my boy is so
(14:49):
stupid that he can't tell thedifference.
Here are two examples thatreally irritate me.
The garage has lock on it,obviously.
I mean, why wouldn't you haveyour garage door locked right?
So the grandfather gets upearly in the morning Usually he
used to be the first one up.
He'll go out there and he'llstick the key in the door, open
it up, turn the floodlight offand then close the door and
(15:10):
leave the key in it and lock itsupposedly.
And there are certain timeswhen I don't want Jacob going in
the garage because he's justgoing to go watch something on
TV that upsets him.
He knows exactly how to get hisown heart rate up and get his
own emotions going and makehimself crazy.
And there are just certaintimes where I know the garage
should be locked and I should besafe, knowing that he's not
(15:33):
going to go in there.
And then I find him in there,or I find him after he's been in
there and he comes to me allpsycho, right.
I have asked this grandfathermany times.
I have to keep doing this everycouple of months.
Why is the garage door unlockedright now?
You know that he's not supposedto be in there and the newest
answer is well, he must havefigured out how to turn the key.
(15:54):
The fucking key is in the doorlock.
It's in there.
What do you think?
He doesn't know how to turn akey.
Are you serious?
He's autistic, not stupid.
Hello, if it were a combinationlock, no, he couldn't do that.
He doesn't understand him.
But you really think that he'sjust stupid?
(16:32):
No-transcript, there is apadlock on it and I know that's
not safe, but we have to do whatwe have to do.
So there are certain times ofthe day when that padlock has to
be locked.
I will walk through the houseduring those times of day and I
will see that it's unlocked.
However, the grandfather willpiece the lock together and make
(16:53):
it look like it's locked.
But if I can see it from tworooms away that the loop is
elongated and it definitely isopen, then why do you think my
son can't see that that lock iscompromised?
And I get on him constantlyabout this.
He always leaves that lockunlocked.
And I'm telling him when my boyends up naked in the street,
hit by a fucking car becauseyou're too lazy to push that
fucking lock together, you'regoing to really feel bad, aren't
(17:13):
you locked?
And I'm telling him when my boyends up naked in the street,
hit by a fucking car becauseyou're too lazy to push that
fucking lock together, you'regonna really feel bad, aren't
you?
Stop leaving it unlocked.
Do you think that he is thatstupid that he can't tell If he
really wants to get out, he'sgonna get out because that lock
is open.
That's the only thing thatkeeps him in the house.
So anyway, apparently Jacob hasnot proven his intelligence
(17:36):
enough around here to have hissafety considered Huge, huge
source of irritation for me.
I hate when people act like heis stupid.
Now, if that's not enough, letme tell you about the newest
development.
I'm just going to start puttingthe stuff out there.
I really don't care.
Do you remember when I told youabout the half-sister attacking
(17:57):
our family and all of that?
Well, there's more.
So recently that one has decidedthat she would like to try to
strong-arm us a little bit.
And this is the funniest letter.
It's funny to me because it'sso, so dumb, and every time I
think about this letter, myfirst thought is how
embarrassing for her.
How embarrassing for her.
(18:18):
So before I read this to you,let me just say that this girl
has never completed anyschooling since high school and
she actually had to take aspecial route to complete that.
Now she's living life like agrown woman and we all know that
she has never put enough timeinto a school to get a degree,
(18:39):
much less the two degrees thatshe is falsifying in the letter,
believe it or not.
Yes, she is falsifyingaccolades in this letter.
Another thing I want to mentionis that she always calls my
spouse Uncle Jason.
Now, look, I'm in my 40s and Istill call my uncle Uncle Eddie.
Okay, and I just think this isso funny, the way that she just
(19:03):
omitted uncle, and now she's,all you know, on the level with
her uncle.
I want to mention that heruncle my spouse was basically
her surrogate father for morethan half her life, when her
father was tangled up in a bunchof stuff that did not allow him
to be here and be a father forher.
Her mother had also alreadyabandoned all three kids.
(19:26):
My spouse was the one whostepped up all the time.
My spouse was there for her andI was there for her.
When her mom didn't show up todo her hair for dance recital, I
was the one that was there, andevery single time this girl
needed anything, it was UncleJason who saved her ass, it was
Uncle Jason who counseled herand Uncle Jason who made her
(19:47):
life better.
Now everything is a mess andit's completely because of the
decisions that all of thesepeople make.
When people are constantlytrying to get their own good
feelings and jollies at my son'sexpense, we just shut them out.
We don't have the time or theenergy with taking care of our
son to also babysit all theneurotypical people out there
(20:09):
who think that they can takeadvantage of him one way or the
other.
She's been shut out ever sincethat other thing.
So let me just get to thisletter.
There is no date, no properheading, no anything.
There's no phone number, noaddress for her or us.
I mean this is if you know howto write a letter, you know what
I'm talking about.
It starts out Dear Jason, inbold type.
(20:32):
The rest of it is not bold, Idon't know.
Anyway, it says Dear Jason, Ihope you're doing well.
I've been reflecting a lotlately and I wanted to share
something with you that's beenon my heart Over time.
I've realized the power offorgiveness, not just for the
sake of others, but also for mypeace of mind and healing.
After much thought, I'vedecided to forgive you for
(20:53):
everything that's happenedbetween us.
I know that forgiveness doesn'tmean forgetting, but it does
mean that I'm choosing to let goof any hurt or resentment that
I've carried.
I want to move forward with alighter heart and I truly
believe this is the first steptoward healing.
With that said, I would like toask your permission to begin
talking to Jacob again.
(21:14):
I believe it's time for me toreconnect with him and I wanted
to be open with you about thisdecision.
I understand that there maystill be lingering feelings and
I want to respect yourperspective.
Please know that I'mapproaching this with care and
consideration and I hope we cancontinue to move forward with
understanding and respect foreach other.
Thank you for taking the timeto read this.
(21:36):
I'm looking forward to hearingyour thoughts and hope we can
continue to rebuild ourrelationship With love.
Comma, big space, no handwrittensignature.
Mrs, her first name andhusband's last name, followed by
the degrees M-B-A, slash L-A-W,followed by Green County,
(21:59):
missouri.
That's the letter.
At first I was giggling becauseshe's the one that hurt our son
.
We didn't do anything to her.
So I thought it was funny atfirst.
And then, when I got all theway to the bottom with the M-B-A
slash law and Green County,missouri, I said what kind of
crazy shit is this?
So if you don't understand whythis is funny, first of all she
(22:20):
is saying that she has made herdecision that it's time to
reconnect with our son.
Which what does that actuallysay?
That says that she thinks shemade the decision to fall out of
contact with our son in thefirst place.
She still doesn't know that sheinsulted our son so badly when
she was here that he has rippedup every picture that he ever
(22:41):
finds of her and he pretty muchwants nothing to do with her
because she has hurt him andnever made him a priority.
She'd come in the driveway andnever even try to say hi.
She'll be on FaceTime with hergrandpa and never even try to
see Jacob or say hello.
And he's there.
He can see her, he can hear herand she never even tries to
talk to him.
She never tried to FaceTime himwhen we were on good terms in
(23:02):
Wisconsin, you know, and he isnot brain dead.
He is fully aware that sheignores him and hurts him.
That's why this is funny.
She actually thinks it's allher decision.
Anyway, the other thing is justhow embarrassing.
I keep saying like I wonder ifher husband knows.
Does her husband know that shejust falsified some accolades?
(23:23):
I can't believe that someonelet her do this without trying
to stop her.
I'm looking forward to hearingyour thoughts.
But doesn't leave a phonenumber or an address.
Anyway, what a dumbass.
It's just constantly us havingto put up blocks.
You know, deflect, deflect,deflect.
I'm just so sick of it.
(23:44):
Nowhere, nowhere, did she ask.
How is Jacob?
I miss Jacob.
I often think about Jacob andwonder how he's doing.
Nowhere in the letter did shehave any concern for Jacob.
So if you ever deal with this,please don't let your solitude
and sorrow and desperation getthe best of you cloud your
(24:06):
judgment.
If you have cut someone out ofyour child's life or out of your
life because of what they do toyour child, you have made the
right decision.
And if they come at you likethis, I think that with the MBA
slash law, I think she thinksfor some reason that that means
something to us and maybe she'strying to strong arm her way
(24:26):
into our son's life, but I dohave a master's in business
administration and she doesn'tscare me at all.
Why would you put that on there?
Anyway, just don't let peopledisturb your peace.
If you're cutting people out ofyour life because of the effect
they have on you and your child, you're doing the right thing,
because, yeah, that's exactlywhat I want.
I want my son to get back intocommunication with someone who
(24:52):
blatantly lies and falsifiesaccolades.
That's who I feel comfortableleaving my son in a room with.
Absolutely Give me a break.
Back to the therapy and stufflike that.
Before we were able to get anyservices or any materials for
sensory and everything for jacobat all in wisconsin, we were
trying to get what we could.
(25:13):
One thing that worked reallywell for him in school was
something they called a peapod.
It's just a sensory canoealmost and you get in there and
it hugs you.
But he was 5'10 when we wereshopping for him and that was
like three or $400 to get that.
So we did not get that.
Instead I got him like a littlehug suit.
It's a kind of stretchymaterial, the same thing.
(25:35):
They make those crawl throughsocks out of that, go on the
floor.
They're like slinkies and youcrawl through them for sensory.
So I got him a hug suit.
He doesn't care about it at all, but that was my first attempt
at kind of creating that sensoryhug that he was always seeking
in school and he never used it.
I put him in it once and hedidn't care.
The other thing I got was asmall weighted blanket.
(25:56):
I really like that thing, butit's really tiny.
It's not the size of a regularblanket at all and I wish it
were.
Because he's a big man Ithought that it would be nice to
have that sensory all over hisbody.
But we did what we could andthat was what we could afford,
and I would give it to him toput on anywhere on his body that
he wanted.
It would probably go fromshoulders to hips.
(26:19):
Anyway, you know, I would giveit to him when he was throwing a
fit and I would say you knowyou want to sit on the couch,
would you like this blanket?
And he would say yes or hewould say no, and if he said no,
I would just leave it next tohim, or if he said yes, I would
put it on him and ask him if itwas okay.
And he said yeah.
And they go by the person'sweight and height and stuff to
make the blanket weigh a certainamount of pounds.
(26:40):
Offhand I don't remember whatit weighs, but I still have it.
The weirdest thing about thisblanket and my kid is that he
never used it as a blanket.
As soon as I would leave theroom he would start making
adjustments to it and we'vealways tried to get him to make
himself comfortable.
You know, if you're hot, takesomething off.
If you're cold, put somethingon.
If your head is uncomfortablethe way you're sitting, adjust
(27:02):
the pillow.
And he'll never do any of that.
He just won't figure it out.
But he did with this blanket.
So he would take the blanketoff of his body and every single
time I give this boy thisblanket, I walk back into the
room and he's got the entireblanket folded up in a ball on
his head and he'll just sitthere with this I don't know 20
pound blanket on his head.
(27:22):
Never did use it on his body.
He can't stand it on his body.
He wants it on his head.
So I don't know, I don't likethat.
I don't think that's good forthe spine.
Sometimes I would let it go onfor a couple minutes, but if
left to him he would do that allday long.
I just don't get it.
Now, speaking of him being a bigman, that was one thing that he
learned in school.
(27:42):
He's always trying to learn orunderstand, it seems, the family
unit, the family dynamic, allof the roles that people play
and the titles and stuff likethat.
He had trouble with mom and dadand son and he didn't quite
understand because he used toknow someone else was mom.
So that was hard for him.
He calls me mommy now, but backwhen he was learning that he
(28:04):
was a big boy, we used to alltell him you're a big boy now.
And I think the school actuallywas telling him that because
he'll come home from school andsay weird stuff, you know.
So he came home from school oneday and he told me Jacob, big
boy, I big, I'm big boy.
And I would say, yes, you are,you are a big boy, look at you.
And he one day he saidShenandoah, tiny woman.
(28:25):
I thought that was the cutestthing.
Nobody taught him that.
He did that.
He made that up, he gave methat role or that title and he
perfectly understood big to tinyboy to woman.
I thought that was awesome.
That was so brilliant of him.
I just thought that was reallycool.
The other thing I wanted to say,as far as developmental
(28:46):
milestones and stuff like that,when we were talking about the
scoring scales and stuff forJacob's evaluation, they didn't
have it in the evaluation, butit's something that I mentioned
before, how I was very proud ofhim having 150 words in his
vocabulary around 13 years oldor so, I don't know.
I never judged him aboutanything, I've always just
accepted him as a whole.
(29:07):
Well, once I started seeingother kids younger than him
eating with forks and stuff, yes, I did wish that he could do a
little bit better.
But when I learned that he had150 words, I was very pleased
with that at 13 years old and Ijust thought it was really cool
and I thought we were makingprogress, you know.
But then I looked it up and afour or five year old's
(29:28):
vocabulary has between 1000 and2000 words and it's completely
understandable at that age.
So when you take it in thatcontext, you take a four or
five-year-old has a thousand ortwo thousand words and my
13-year-old has 150.
Yes, I understand that that'snot great, but for my family and
my household, for my son, itwas awesome, and I don't think
(29:51):
that we should be comparing ourkids to others.
You shouldn't compare yourselfto anyone.
You shouldn't compare the kidto anybody.
We're all on a journey and noone's going to be the same, so
just do what you can with it.
One of my favorite stories.
I may have told this before,but it warrants repeating.
It's so cute.
I used to put him in bed and hewas getting, you know, 13, 14
(30:11):
years old, he was starting togrow hair in weird places and
there was one day when I tuckedhim into bed and I was leaving
his room.
He was in good spirits at thetime, so I gave him a kiss and
tucked him in and said Daddywill be home soon.
He said Shindle, look.
And he jumped out of bed,pulled his pants down and said
Chewbacca, he is a prankster atheart.
He loves to mess with you andplay jokes on you and stuff like
(30:35):
that.
And you know, I just can'timagine the type of person he
might be if he didn't have to beso shrouded by autism, because
as smartass and pranksterish ashe is, I think he would be
really a force to be reckonedwith.
In my next episode we're goingto start getting back into all
of the things that were going onbefore we got him into therapy
(30:57):
and before we got him services.
I have so many things and somany experiences and lots of
insights and just things thatreally slapped me in the face,
even from people who aresupposed to be professionals the
way that they judge him andprejudge him as a matter of fact
, and all the things I learnedfrom other kids in an autism
group.
I got so much to share, sowe'll start getting back into
(31:18):
that in my next episode.
Oh, by the way, I guess thismost recent full moon, which was
the wolf moon, is supposedlyvery emotional.
It's having an emotional effecton people and, as you know, our
sun is very affected by themoon I think a lot of our kids
are but its effects are expectedto be felt for up to two weeks
afterward, as opposed to like atwo or three day period with
(31:41):
normal moons.
I am definitely seeing this inour son's behavior this week.
He's just really off the chartsand kind of all over the place
emotionally.
I don't know if it's the moonor the medicine.
I mean, do we ever?
But if you've noticed anyheightened emotion or sadness
and stuff like that with yourkid, you've probably got about a
week left of the moon's effects, so maybe that'll help Hang in
(32:04):
there.
You're a superhero.
Hello and welcome to the Parenting Severe
Autism Podcast.
I am your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
Please remember to visit psa.
buzzsprout.
com if you would like to send meany text messages or check out
any of my links, and, of course,you can always support the
podcast by clicking on any ofthe buttons on your media player
(00:39):
for supporting this podcast.
In this episode I'm going todetail our most recent
experience with getting our sonevaluated, and it was when he
was 16.
He's 24 now.
It was much different from theoriginal evaluation.
I've also got a couple of cutelittle stories that I'd like to
share another little familyincident.
So here we go.
This is out of chronologicalorder, as I've mentioned before,
(01:03):
but I really wanted to get intothe experience.
In case anyone out there issearching for services for their
child and if you don't knowwhat to expect, this might help
you a little bit.
It also, I think, offers a lotof insight into our son's
condition, since they are alldifferent.
This is going to be a lot ofnumbers and rating scales and
(01:24):
other specifics that wereinvolved in this evaluation.
He actually didn't even getevaluated until he was back in
school.
Jacob never had access toservices while he was being
homeschooled and non-schoolednot these types of services.
I did find him other things toget involved in which I'll get
into in other episodes.
Find him other things to getinvolved in which I'll get into
(01:46):
in other episodes, but I reallywanted to focus on this just to
get this out of the way and helpyou understand his level of
autism.
Once we finally did find thisplace it's in Wisconsin.
It's called Caravel AutismHealth.
It's actually for autism and Iwas delighted to find this in
the first place.
They wanted to send us first toa psychologist near our home to
get him evaluated and see if heeven qualified to go to
(02:09):
Caravelle.
So we had this appointment witha very nice lady.
She said this was going to takeabout 45 minutes to an hour to
get him evaluated in her office.
So the three of us went there.
We were very nervous becauseJacob understandably does not
cope well with people talkingabout him in front of him and we
have made it a rule that thisis not allowed.
(02:31):
But it went really well and shedid not disrespect his needs in
any way.
It most certainly did not take45 minutes.
Apparently, our child is soautistic that we never fill the
time slot that people schedulefor us in order to evaluate him.
We were in with her forprobably 10 to 15 minutes and
there was another time, before Icame around, where my spouse
(02:54):
had to bring Jacob in for anevaluation to try to get him on
Social Security disabilityincome and the man said that he
needed to speak with Jacob aloneand it was just going to take a
few minutes.
So my spouse said, okay, havefun with that.
And then within less than 30seconds the guy was like, okay,
everything's fine, let's juststop this.
Right now he definitely isdisabled.
(03:16):
So it was kind of like that,you know.
She said she wanted to talk tohim for five or 10 minutes and
we said okay.
And then as soon as we sat downshe came back out and she's
like okay, we're good, come onback in.
So he got his evaluation fromher and it definitely qualified
him to have an appointment atCaravelle.
I cannot say enough good aboutthis autism therapy facility.
(03:37):
We were so blessed to have beenin Wisconsin and I am really
sad that we had to leave becausethe services, once they kicked
in Jacob, was just set up.
It was so good.
All kinds of good stuff wascoming down the pipeline for him
and we had to leave it allbehind.
Anyway, I want to tell you theresults and how this whole thing
went.
So we went into kind of a bigplayroom, two or three
(04:00):
clinicians were observing ourchild and we tried to get him to
play with the stuff that was inthere.
He's mostly concerned with justmaking sure that we know he's
there and they tried to talk tous.
We did not talk about him in away that he would know, because
I had already told them we don'ttalk about him in front of him.
You'll have to take us outsideinto a different room if you
(04:21):
want us to talk about him, butthey did their evaluations just
sitting there.
We were there for about threehours just because there were so
many different areas in whichthey needed to test him for the
services that they were able toprovide, so that was the longest
ever.
I'd like to read some of thispsychological evaluation to you.
(04:41):
He was rated on two differentscales and I'm going to explain
what those are in case you arenot familiar.
It seems like everyone I'vetalked to has dealt with a
different method of rating or adifferent rating scale.
Everyone's got different ideasof how autism is evaluated, so
this is what we went through.
It first starts out Jacob wasat the time a 16-year and
(05:04):
5-month-old young man.
He has lived in this currenthouse in Wisconsin for four
years.
He currently attends ninthgrade at the high school on
Monday, Tuesday, thursday andFriday from 8 am until 11 am.
Quick note on that we had tocreate this schedule for him
because, although he indicatedat this time that he was ready
to try to go back to school, welearned this time that he was
ready to try to go back toschool.
(05:25):
We learned very quickly that hecould not handle full days and
he could not handle five days aweek, even with short days.
So this was a very customizedschedule and it resulted in him
not receiving services.
So it goes on to say hecurrently does not receive any
services while at school, but hedoes have an IEP.
(05:46):
So already you know that sucksright.
So they went on to detail hisfamily health history and it
says he does not engage inreciprocal conversations, which
was observed during theappointment.
It was reported that hetypically requests, using words
and phrases instead of pointing,I guess.
So it's usually we have to saywhat do you want and then we
(06:08):
have to say I want.
And then he'll say I wantwhatever.
But he's not really that goodat that anymore.
Anyway, after the family medicalhistory they went into sensory
and tolerance report and theysaid his hearing was fine.
He's sensitive to loud noisesand thunder.
His vision is intact.
He has really really greatvision.
It's overly perfect.
(06:29):
He does stare at mirrors forextended periods of time.
Olfactory senses appear to benormal.
He's sensitive to certaintastes and textures and, it was
reported, he is a good eater andsits for the duration of meals.
In the past he has beensensitive to tags within his
clothing and he will not wearclothes that are too snug.
After that it goes intoexecutive functioning.
(06:49):
Jacob has a difficult timeunderstanding cause and effect
and his thought process isdisorganized and confused.
Jacob does get easilyoverwhelmed in social situations
.
And then they go into theresults of the testing.
In the first set of resultsthey use the Vineland Adaptive
Behavior Scales, second edition.
They say that Jacob hadCommunication, daily Living
(07:12):
Skills and SocializationStandard scores of 47, 48, and
48, respectively.
He had an Adaptive BehaviorComposite of 47.
Jacob's Communication, dailyliving skills, socialization and
adaptive behavior composite areall in the low level.
Now just to give you an idea,here in the Vineland rating
(07:35):
scale could be Vineland I don'tknow it, just it's spelled
Vineland In the Vineland ratingscale.
These are the categories From 0to 17 is average, from 18 to 20
is elevated and any score 21and over equals clinically
significant indicating need fortreatment intervention.
Again, he scored 47, 48, and 48, and his adaptive behavior
(07:57):
composite is 47.
So he is definitely in theclinically significant
indicating need for treatmentintervention.
To me that sounded like anemergency.
It sounded so bad.
I didn't even realize that hewas like I said, this was all I
ever knew and I didn't realizethat he was so, so autistic.
(08:18):
I didn't realize.
Anyway, the next rating scaleis the Childhood Autism Rating
Scale, otherwise known as CARSC-A-R-S second edition.
This was also administered onthe same date.
Jacob had a total score of 42.5, placing him in the severe
symptoms of autism spectrumdisorder range.
So the CARS rating scale isfrom 15 to 60.
(08:42):
Any score below 30 isnon-autistic, any score from 30
to 36.5 is mild to moderate andany score from 37 to 60
indicates severe.
So again on the CARS scale, heplaced 42.5, so he is in the
severe range for that.
This report goes on to say thatthe pediatric developmental
(09:03):
screener was administered and hehad a total of 14 false
responses.
False responses over five for achild three years and older are
usually suggestive of an autismspectrum disorder and that
further testing is warranted.
So his final diagnosis wasautism spectrum disorder,
needing very substantial supportfor social communication and
(09:24):
restrictive, repetitivebehaviors.
Summary and recommendations.
Jacob is a 16-year-old young manwho was brought in by his
parents on this date for apsychological evaluation.
He did show obvious signs ofautism throughout the session
today.
Jacob is very appropriate forinclusion in an intensive
behavioral treatment program forautism and they recommended to
(09:45):
start with 20 to 25 hours ofintensive applied behavioral
analysis treatment each week andwithin the first two weeks they
asked us to go to 40 to 45hours a week.
Yeah, they did this.
Therapy was in home, which wasgreat because we lived about an
hour from anything.
Really, they ended up comingright after school, so he would
(10:06):
get out of school school at 11and they would get there around
11, 30 or noon while he washaving his lunch and they would
therapy him all the way up untilseven o'clock at night Some
days.
I couldn't take it and I wasjust like, look, we can't do
this.
We never did put him in a 40hour a week because I couldn't
take it, because it was all inthe same house.
When they came to the house, thefirst two visits were a
(10:29):
nightmare because they allowedhim to just be as autistic as he
wanted to be and I mean this isnot shit that I allow in my
house.
You know, these are behaviors,not actual autism.
So in our book here at home webelieve that behaviors and it's
not that we made this up on ourown we did have help, we did
(10:50):
have advice and intervention andprofessional opinions and all
kinds of stuff like that, rightbut the bottom line is that
autism is a disability andbehaviors are controllable.
Behaviors 90% of the time are achoice.
Controllable Behaviors 90% ofthe time are a choice.
And he was able to choose tobehave the worst way possible
while these women were in ourhouse.
(11:11):
He had two to three women at atime on him doing play therapy
and it was really good for him.
But those first couple ofvisits were terrible and I
finally asked him like, hey,look, this is not allowed in my
home.
He cannot behave like this.
Why are you, what are you doing?
Why are you allowing him toscream and abuse you and abuse
himself and abuse the house?
This is not how he's allowed tobehave in here.
(11:32):
And they said, oh, we justassumed that this was normal and
we were just letting him be himLike, no, no, this is not
normal, this is not allowed.
A couple other things I wantedto mention that I actually
didn't have written down, butnow that I'm thinking of it,
they had us fill out a bunch ofpaperwork beforehand and I had
to tell them everything that wedo and do not do for him, and I
(11:54):
told them about having to puthim outside.
I told them about some of myother types of just resets for
him.
You know they're just sensoryresets and I didn't even know
that I just I just didn't knowwhat else to do and I did what
made sense to me and I told themabout all these things, which I
will detail in many laterepisodes, I'm sure.
But what was really nice for meto learn from this was that I
(12:16):
was doing everything right.
They had no suggestions for meas a parent to help make my life
easier with my son, becauseeverything that they were going
to suggest that's on theirnormal list.
I was already doing.
Remember that, because youmight get there too.
Once I learned that everythingI'm doing is actually on the
list of recommended behaviorsfor parents to do for their
(12:37):
children, I felt so much moreconfident and so much less like
an asshole myself.
I thought, you know, sometimeslike geez, I suck at this mom
stuff.
I don't know what to do.
Yay, so it was a bit of agrueling process.
Again, nobody likes havingtheir life picked apart or their
son picked apart or anythinglike that, but it was so worth
(13:00):
it.
He got what he needed.
They were able to coordinatecare with the medical center
that we took him to and Imentioned he never did get to
see an actual doctor.
So they coordinated care withthe medical clinic where the
nurse practitioner was that healways saw that pretended that
the doctor was out.
But yeah, they were reallygreat, really easy to work with.
Between that and then the CPCenter and then the autism
(13:22):
program that was the non-profitand school.
We had a very busy autism life.
So now that that's out of theway.
If you have any questions,comments or anything else, do
you know you're able to actuallysend me a text message.
Now, if you're on my Buzzsprouthosting site, which is
psabuzzsproutcom, there's alittle section called fan mail.
(13:43):
I don't know if you can get itright from your player on your
device or not, I'm really notfamiliar, but I know that I have
it.
I turned it on.
There's been a recentdevelopment with family.
If you heard the episodes withmy spouse just a little while
ago when I interviewed him, onething that he mentioned, that
really hit home for me, eventhough I live it, you know, to
(14:03):
hear him say it, it reallyaffected me.
He said that people treat himlike he's brain dead.
You remember that.
Well, I want to speak to thatfor just a moment, because
things keep happening.
You know, people just keepdoing things.
We have had to put padlocks oneverything and I haven't told
you all this stuff because I'm,like I said, I'm trying to go in
chronological order but we kindof live like we're in prison
(14:26):
here.
I did mention a little aboutthat when I was talking about
him eloping because I wasn'table to chase him because
everything was locked down.
Everything is padlocked andthere's a reason we either don't
want him going in here or wedon't want him going out of here
.
The family doesn't see theurgency or importance of locking
them, and what irritates me isthat they think my boy is so
(14:49):
stupid that he can't tell thedifference.
Here are two examples thatreally irritate me.
The garage has lock on it,obviously.
I mean, why wouldn't you haveyour garage door locked right?
So the grandfather gets upearly in the morning Usually he
used to be the first one up.
He'll go out there and he'llstick the key in the door, open
it up, turn the floodlight offand then close the door and
(15:10):
leave the key in it and lock itsupposedly.
And there are certain timeswhen I don't want Jacob going in
the garage because he's justgoing to go watch something on
TV that upsets him.
He knows exactly how to get hisown heart rate up and get his
own emotions going and makehimself crazy.
And there are just certaintimes where I know the garage
should be locked and I should besafe, knowing that he's not
(15:33):
going to go in there.
And then I find him in there,or I find him after he's been in
there and he comes to me allpsycho, right.
I have asked this grandfathermany times.
I have to keep doing this everycouple of months.
Why is the garage door unlockedright now?
You know that he's not supposedto be in there and the newest
answer is well, he must havefigured out how to turn the key.
(15:54):
The fucking key is in the doorlock.
It's in there.
What do you think?
He doesn't know how to turn akey.
Are you serious?
He's autistic, not stupid.
Hello, if it were a combinationlock, no, he couldn't do that.
He doesn't understand him.
But you really think that he'sjust stupid?
(16:32):
No-transcript, there is apadlock on it and I know that's
not safe, but we have to do whatwe have to do.
So there are certain times ofthe day when that padlock has to
be locked.
I will walk through the houseduring those times of day and I
will see that it's unlocked.
However, the grandfather willpiece the lock together and make
(16:53):
it look like it's locked.
But if I can see it from tworooms away that the loop is
elongated and it definitely isopen, then why do you think my
son can't see that that lock iscompromised?
And I get on him constantlyabout this.
He always leaves that lockunlocked.
And I'm telling him when my boyends up naked in the street,
hit by a fucking car becauseyou're too lazy to push that
fucking lock together, you'regoing to really feel bad, aren't
(17:13):
you locked?
And I'm telling him when my boyends up naked in the street,
hit by a fucking car becauseyou're too lazy to push that
fucking lock together, you'regonna really feel bad, aren't
you?
Stop leaving it unlocked.
Do you think that he is thatstupid that he can't tell If he
really wants to get out, he'sgonna get out because that lock
is open.
That's the only thing thatkeeps him in the house.
So anyway, apparently Jacob hasnot proven his intelligence
(17:36):
enough around here to have hissafety considered Huge, huge
source of irritation for me.
I hate when people act like heis stupid.
Now, if that's not enough, letme tell you about the newest
development.
I'm just going to start puttingthe stuff out there.
I really don't care.
Do you remember when I told youabout the half-sister attacking
(17:57):
our family and all of that?
Well, there's more.
So recently that one has decidedthat she would like to try to
strong-arm us a little bit.
And this is the funniest letter.
It's funny to me because it'sso, so dumb, and every time I
think about this letter, myfirst thought is how
embarrassing for her.
How embarrassing for her.
(18:18):
So before I read this to you,let me just say that this girl
has never completed anyschooling since high school and
she actually had to take aspecial route to complete that.
Now she's living life like agrown woman and we all know that
she has never put enough timeinto a school to get a degree,
(18:39):
much less the two degrees thatshe is falsifying in the letter,
believe it or not.
Yes, she is falsifyingaccolades in this letter.
Another thing I want to mentionis that she always calls my
spouse Uncle Jason.
Now, look, I'm in my 40s and Istill call my uncle Uncle Eddie.
Okay, and I just think this isso funny, the way that she just
(19:03):
omitted uncle, and now she's,all you know, on the level with
her uncle.
I want to mention that heruncle my spouse was basically
her surrogate father for morethan half her life, when her
father was tangled up in a bunchof stuff that did not allow him
to be here and be a father forher.
Her mother had also alreadyabandoned all three kids.
(19:26):
My spouse was the one whostepped up all the time.
My spouse was there for her andI was there for her.
When her mom didn't show up todo her hair for dance recital, I
was the one that was there, andevery single time this girl
needed anything, it was UncleJason who saved her ass, it was
Uncle Jason who counseled herand Uncle Jason who made her
(19:47):
life better.
Now everything is a mess andit's completely because of the
decisions that all of thesepeople make.
When people are constantlytrying to get their own good
feelings and jollies at my son'sexpense, we just shut them out.
We don't have the time or theenergy with taking care of our
son to also babysit all theneurotypical people out there
(20:09):
who think that they can takeadvantage of him one way or the
other.
She's been shut out ever sincethat other thing.
So let me just get to thisletter.
There is no date, no properheading, no anything.
There's no phone number, noaddress for her or us.
I mean this is if you know howto write a letter, you know what
I'm talking about.
It starts out Dear Jason, inbold type.
(20:32):
The rest of it is not bold, Idon't know.
Anyway, it says Dear Jason, Ihope you're doing well.
I've been reflecting a lotlately and I wanted to share
something with you that's beenon my heart Over time.
I've realized the power offorgiveness, not just for the
sake of others, but also for mypeace of mind and healing.
After much thought, I'vedecided to forgive you for
(20:53):
everything that's happenedbetween us.
I know that forgiveness doesn'tmean forgetting, but it does
mean that I'm choosing to let goof any hurt or resentment that
I've carried.
I want to move forward with alighter heart and I truly
believe this is the first steptoward healing.
With that said, I would like toask your permission to begin
talking to Jacob again.
(21:14):
I believe it's time for me toreconnect with him and I wanted
to be open with you about thisdecision.
I understand that there maystill be lingering feelings and
I want to respect yourperspective.
Please know that I'mapproaching this with care and
consideration and I hope we cancontinue to move forward with
understanding and respect foreach other.
Thank you for taking the timeto read this.
(21:36):
I'm looking forward to hearingyour thoughts and hope we can
continue to rebuild ourrelationship With love.
Comma, big space, no handwrittensignature.
Mrs, her first name andhusband's last name, followed by
the degrees M-B-A, slash L-A-W,followed by Green County,
(21:59):
missouri.
That's the letter.
At first I was giggling becauseshe's the one that hurt our son
.
We didn't do anything to her.
So I thought it was funny atfirst.
And then, when I got all theway to the bottom with the M-B-A
slash law and Green County,missouri, I said what kind of
crazy shit is this?
So if you don't understand whythis is funny, first of all she
(22:20):
is saying that she has made herdecision that it's time to
reconnect with our son.
Which what does that actuallysay?
That says that she thinks shemade the decision to fall out of
contact with our son in thefirst place.
She still doesn't know that sheinsulted our son so badly when
she was here that he has rippedup every picture that he ever
(22:41):
finds of her and he pretty muchwants nothing to do with her
because she has hurt him andnever made him a priority.
She'd come in the driveway andnever even try to say hi.
She'll be on FaceTime with hergrandpa and never even try to
see Jacob or say hello.
And he's there.
He can see her, he can hear herand she never even tries to
talk to him.
She never tried to FaceTime himwhen we were on good terms in
(23:02):
Wisconsin, you know, and he isnot brain dead.
He is fully aware that sheignores him and hurts him.
That's why this is funny.
She actually thinks it's allher decision.
Anyway, the other thing is justhow embarrassing.
I keep saying like I wonder ifher husband knows.
Does her husband know that shejust falsified some accolades?
(23:23):
I can't believe that someonelet her do this without trying
to stop her.
I'm looking forward to hearingyour thoughts.
But doesn't leave a phonenumber or an address.
Anyway, what a dumbass.
It's just constantly us havingto put up blocks.
You know, deflect, deflect,deflect.
I'm just so sick of it.
(23:44):
Nowhere, nowhere, did she ask.
How is Jacob?
I miss Jacob.
I often think about Jacob andwonder how he's doing.
Nowhere in the letter did shehave any concern for Jacob.
So if you ever deal with this,please don't let your solitude
and sorrow and desperation getthe best of you cloud your
(24:06):
judgment.
If you have cut someone out ofyour child's life or out of your
life because of what they do toyour child, you have made the
right decision.
And if they come at you likethis, I think that with the MBA
slash law, I think she thinksfor some reason that that means
something to us and maybe she'strying to strong arm her way
(24:26):
into our son's life, but I dohave a master's in business
administration and she doesn'tscare me at all.
Why would you put that on there?
Anyway, just don't let peopledisturb your peace.
If you're cutting people out ofyour life because of the effect
they have on you and your child, you're doing the right thing,
because, yeah, that's exactlywhat I want.
I want my son to get back intocommunication with someone who
(24:52):
blatantly lies and falsifiesaccolades.
That's who I feel comfortableleaving my son in a room with.
Absolutely Give me a break.
Back to the therapy and stufflike that.
Before we were able to get anyservices or any materials for
sensory and everything for jacobat all in wisconsin, we were
trying to get what we could.
(25:13):
One thing that worked reallywell for him in school was
something they called a peapod.
It's just a sensory canoealmost and you get in there and
it hugs you.
But he was 5'10 when we wereshopping for him and that was
like three or $400 to get that.
So we did not get that.
Instead I got him like a littlehug suit.
It's a kind of stretchymaterial, the same thing.
(25:35):
They make those crawl throughsocks out of that, go on the
floor.
They're like slinkies and youcrawl through them for sensory.
So I got him a hug suit.
He doesn't care about it at all, but that was my first attempt
at kind of creating that sensoryhug that he was always seeking
in school and he never used it.
I put him in it once and hedidn't care.
The other thing I got was asmall weighted blanket.
(25:56):
I really like that thing, butit's really tiny.
It's not the size of a regularblanket at all and I wish it
were.
Because he's a big man Ithought that it would be nice to
have that sensory all over hisbody.
But we did what we could andthat was what we could afford,
and I would give it to him toput on anywhere on his body that
he wanted.
It would probably go fromshoulders to hips.
(26:19):
Anyway, you know, I would giveit to him when he was throwing a
fit and I would say you knowyou want to sit on the couch,
would you like this blanket?
And he would say yes or hewould say no, and if he said no,
I would just leave it next tohim, or if he said yes, I would
put it on him and ask him if itwas okay.
And he said yeah.
And they go by the person'sweight and height and stuff to
make the blanket weigh a certainamount of pounds.
(26:40):
Offhand I don't remember whatit weighs, but I still have it.
The weirdest thing about thisblanket and my kid is that he
never used it as a blanket.
As soon as I would leave theroom he would start making
adjustments to it and we'vealways tried to get him to make
himself comfortable.
You know, if you're hot, takesomething off.
If you're cold, put somethingon.
If your head is uncomfortablethe way you're sitting, adjust
(27:02):
the pillow.
And he'll never do any of that.
He just won't figure it out.
But he did with this blanket.
So he would take the blanketoff of his body and every single
time I give this boy thisblanket, I walk back into the
room and he's got the entireblanket folded up in a ball on
his head and he'll just sitthere with this I don't know 20
pound blanket on his head.
(27:22):
Never did use it on his body.
He can't stand it on his body.
He wants it on his head.
So I don't know, I don't likethat.
I don't think that's good forthe spine.
Sometimes I would let it go onfor a couple minutes, but if
left to him he would do that allday long.
I just don't get it.
Now, speaking of him being a bigman, that was one thing that he
learned in school.
(27:42):
He's always trying to learn orunderstand, it seems, the family
unit, the family dynamic, allof the roles that people play
and the titles and stuff likethat.
He had trouble with mom and dadand son and he didn't quite
understand because he used toknow someone else was mom.
So that was hard for him.
He calls me mommy now, but backwhen he was learning that he
(28:04):
was a big boy, we used to alltell him you're a big boy now.
And I think the school actuallywas telling him that because
he'll come home from school andsay weird stuff, you know.
So he came home from school oneday and he told me Jacob, big
boy, I big, I'm big boy.
And I would say, yes, you are,you are a big boy, look at you.
And he one day he saidShenandoah, tiny woman.
(28:25):
I thought that was the cutestthing.
Nobody taught him that.
He did that.
He made that up, he gave methat role or that title and he
perfectly understood big to tinyboy to woman.
I thought that was awesome.
That was so brilliant of him.
I just thought that was reallycool.
The other thing I wanted to say,as far as developmental
(28:46):
milestones and stuff like that,when we were talking about the
scoring scales and stuff forJacob's evaluation, they didn't
have it in the evaluation, butit's something that I mentioned
before, how I was very proud ofhim having 150 words in his
vocabulary around 13 years oldor so, I don't know.
I never judged him aboutanything, I've always just
accepted him as a whole.
(29:07):
Well, once I started seeingother kids younger than him
eating with forks and stuff, yes, I did wish that he could do a
little bit better.
But when I learned that he had150 words, I was very pleased
with that at 13 years old and Ijust thought it was really cool
and I thought we were makingprogress, you know.
But then I looked it up and afour or five year old's
(29:28):
vocabulary has between 1000 and2000 words and it's completely
understandable at that age.
So when you take it in thatcontext, you take a four or
five-year-old has a thousand ortwo thousand words and my
13-year-old has 150.
Yes, I understand that that'snot great, but for my family and
my household, for my son, itwas awesome, and I don't think
(29:51):
that we should be comparing ourkids to others.
You shouldn't compare yourselfto anyone.
You shouldn't compare the kidto anybody.
We're all on a journey and noone's going to be the same, so
just do what you can with it.
One of my favorite stories.
I may have told this before,but it warrants repeating.
It's so cute.
I used to put him in bed and hewas getting, you know, 13, 14
(30:11):
years old, he was starting togrow hair in weird places and
there was one day when I tuckedhim into bed and I was leaving
his room.
He was in good spirits at thetime, so I gave him a kiss and
tucked him in and said Daddywill be home soon.
He said Shindle, look.
And he jumped out of bed,pulled his pants down and said
Chewbacca, he is a prankster atheart.
He loves to mess with you andplay jokes on you and stuff like
(30:35):
that.
And you know, I just can'timagine the type of person he
might be if he didn't have to beso shrouded by autism, because
as smartass and pranksterish ashe is, I think he would be
really a force to be reckonedwith.
In my next episode we're goingto start getting back into all
of the things that were going onbefore we got him into therapy
(30:57):
and before we got him services.
I have so many things and somany experiences and lots of
insights and just things thatreally slapped me in the face,
even from people who aresupposed to be professionals the
way that they judge him andprejudge him as a matter of fact
, and all the things I learnedfrom other kids in an autism
group.
I got so much to share, sowe'll start getting back into
(31:18):
that in my next episode.
Oh, by the way, I guess thismost recent full moon, which was
the wolf moon, is supposedlyvery emotional.
It's having an emotional effecton people and, as you know, our
sun is very affected by themoon I think a lot of our kids
are but its effects are expectedto be felt for up to two weeks
afterward, as opposed to like atwo or three day period with
(31:41):
normal moons.
I am definitely seeing this inour son's behavior this week.
He's just really off the chartsand kind of all over the place
emotionally.
I don't know if it's the moonor the medicine.
I mean, do we ever?
But if you've noticed anyheightened emotion or sadness
and stuff like that with yourkid, you've probably got about a
week left of the moon's effects, so maybe that'll help Hang in
(32:04):
there.
You're a superhero.
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