Monday, January 16, 2012

Temple Grandin

My husband and i recently watched the movie
Temple Grandin
which was made in 2010.
My Mom mentioned this movie to me months ago
and i just hadn't gotten around to it,
but wanted to see it.
Apparently it won many awards and was very well done.
My Mom took it out of the library for me...
there are 17 copies of it or something like
that and there was a wait list to get it.
What a story...
a tear-jerker for this Mama :)
Temple is a grown woman who was diagnosed with
Autism at the age of 5.
She was completely non-verbal at that time.
The movie is based on her life story,
played by Claire Daines who is
amazing in the movie...
especially once you watch the clip i posted above
(of one of Temples conferences she spoke at)
and observe how Temple talks and
her manurisms and what not.
The clip is 20 minutes long,
but gives you great insight into the world of Autism,
into the world of how different
minds view the world,
and to how to best train these brainy
autistic kids to use what they have, to offer to the world.
Temple has written several books on Autism
and the outlook that she has through it...
about viewing the world in pictures.
She is very well spoken and speaks at conferences
all over the world today.
What hope it gives to us who worry about
our kids with ASD and their future.
I recommend this movie (below) to anyone who
knows someone with Autism.

Wednesday, January 11, 2012

My way or the highway!!

Control.
We all want it.
Sometimes we feel like the world will come to an end
if we don't have a firm grip on it.
Marshall likes control too.
And these days i'm a bit lost as to what to do about it.
A lot of it is based around his independence.
A few months back when Marshall
seemed really motivated to dress himself,
he'd yell and scream at me if i tried to help him pull
his shirt over his head, or his pants up.
I knew he was just trying to figure things out...
he is still doing this now,
and sometimes he can't figure it out...
but sometimes he will ask for help.
Then i will go to help him and he will get angry
and yell, "no thank-you!"...
as he continues to get frustrated.
What do you do?
He wants a cheese string, he's excited to eat it,
he wants to open it.
He understands that he needs to separate the plastic at
one end in order to peel it open, and he's trying, and he's close,
but he just can't get it, or not quickly enough.
He is getting frustrated
and so i (or my mom as this is often the snack on our weekly
dinner at my parents place)
will offer to help him.
Same scenario as above...
he will say "help" or "open (p)lease"
and once we put our hand out to help him,
he freaks out and starts yelling "no thank you!"
But he wants it open, badly, and now.
It's so confusing for me
as well as for anyone in these scenarios.
So what ends up happening?
He will sometimes figure it out himself.
Other times, he won't, and it's maddness
and screaming and frustration...
and with dressing i end up just pulling his shirt over his head
as he yells at me, or with the cheese string
i end up ripping it
out of his hand to quickly start the opening process for him...
again, while he's yelling and jumping
and it's this chaotic time of crazy!
If i end up pulling his shirt over, sometimes he
just finishes the job and is ok...
and other times, he is so angry that i helped him,
even though he wanted it, needed it in that moment,
that he will either rip his shirt off completely
and run around in a rage,
trying to start over and do it all himself.
With the cheese, once he sees it has been opened even slightly,
sometimes he will just finish opening it and is ok,
other times he will want a new cheese string,
an unopened one...
and often he'll start crying as he stands there trying
to put the opened package back together so he can
do it himself.
*sigh
It can be very frustrating.
And this is every day.
But lately it's with different things.
He has mastered getting himself dressed most days,
even his socks! He really wanted to do his
own buttons on some pj's my mom made for him
for Christmas. He would let me help him
as he watched intently, and i'd let him pull the button
through once we'd lined up the hole.
But each time, he'd try on his own first.
Well, he can now do up, and undo the buttons on
his pajamas all on his own!
His sister just learned to do
buttons last year, and that is because i made her learn. lol.
Marshall is so stinking motivated - it is such a blessing
and very unheard of in the Autism world.
Hopefully he continues to be this determined his whole life.
I'm sure M's OT at NSAP will be impressed to hear
of his button accomplishment :)
So, back to Marshall's need for control.
At NSAP before Christmas,
Marshall's teacher told me that M was having some
real anxiety about the exercise balls,
you know those large yoga type balls?
Autism is so strange sometimes...
Marshall has played with these balls in the past,
in fact, we have one at home that he's played
with and had fun with, but has been in the
shed after last summer for storage.
He'd played with the balls at NS on several occaisions,
but now, all of a sudden, without any obvious
thing happening that would trigger a sudden fear,
Marshall was crying and screaming like he was
scared whenever his teacher would try to
play with him using the balls.
Weird right?
Marshall's teacher was telling me about this and how
it was becoming such a problem that they were
going to be creating a social story for them.
What is the deal Marshall? I was confused
and wanted to see for myself what was happening.
So Miranda went over to the balls and picked one
of them up and then called to M asking if
he wanted to play with one.
I couldn't believe my eyes (or ears-lol).
Marshall started screaming and crying and jumping
and really just freaking out... having a complete meltdown
over this ball. He ran over to Miranda and took it
from her, while still crying and screaming,
and was yelling "no!" and "back!"
He ran to the corner where the balls belong and he
put it back in the pile.
And then he came for cuddles to calm down.
wow.
It was super intense and so strange at the same time.
hmmm....
Miranda went on to tell me that not only is he
having a problem playing with the balls,
but he doesn't want any of the other kids to play with them either.
He keeps a watchful eye on that corner of the room
and if anyone even walks close to that area,
he starts losing it.
So obviously Marshall overcoming his fear,
if that's what it even is? of the balls became something
that they worked on at NS.
It took a week or so, but now Marshall is playing
with the balls and allowing for others to as well...
and we will never know exactly what the fuss was
even all about.
It's as if for that short time,
he needed to control everything to do with those balls,
and if that was even close to being disrupted,
it was more than he could handle.
Having strange fears can be an autism related thing.
Marshall has not displayed a lot of this over the years,
but i do remember about a year ago when
Marshall was suddenly incredibly scared of
the light fixture in the kitchen.
If we'd pick him up near it, he'd duck down
and bury himself in us.
If you tried to lift him towards it,
he'd bend farther towards the ground and yell.
I kept asking my husband if he was sure
that he hadn't thrown M into it or something. lol.
But nothing had happened, at least nothing
visible to us, and so it was just unexplained.
And like everything, the fear passed
and now he will reach up and try to touch it if we
are near it. No biggy.
Just strange.
On a daily basis, there is a battle going on here.
And right now, i'm mostly just catering to
Marshalls demands.
Mostly they revolve
around him wanting control, but also around independence.
For example:
About two months or so ago, Marshall decided that
he wanted to carry his food to the table
from the kitchen.
It was great!
He would take his plate or bowl
while balancing his food and bring it to the table to eat.
Nothing wrong with that right?!
Now, Marshall wants to do it...
but he always wants to do it.
If it is something tricky to carry and i go ahead
and place it at the table and call him to come.
Once he sees that i've brought it to
the table, he freaks out and starts yelling "back!"
I will say, "It's ok Marshall, just come and eat."
But that's not good enough...
or he's too mad to listen to me, who knows.
He will continue to yell until i pick up the
plate and all i have to do is take 5 steps into the kitchen
area, and then he is happy to take it from me
and bring it to the table himself.
If i don't pick up the plate,
he will eventually go to the table, grab it,
and carry it to the kitchen counter.
He'll wait 5 seconds while he stares at the plate
before he picks it back up and carries it back to the table.
It's quite OCD if you ask me.
Marshall has not been diagnosed with that,
and i'm not sure he has it or is doing enough of it
to call it a label... for now anyways.
Marshall will do this with his drink also,
which i sometimes only get for the kids once their
sitting and eating their lunch.
I will walk over to the table with Marshall yelling at me
cause he wants to do it, but i want him to stay
sitting during eating time.
I have realized now though, that if i just hand the cup
to Marshall while he's already sitting
and allow for him to place it on
the table, that's good enough for him.
I am catering to it, i know this,
and it's not because i'm weak or choosing not to fight,
it's simply because i'm not sure where
the line is with this issue being about M seeking independence...
or just control?
I do prompt him to ask me nicely
rather than yelling at me,
which he does most of the time.
For now, it's just frustrating, and M will start doing this
with something new out of nowhere.
He had a cold recently and he'd call me to wipe his
runny nose by saying "nose!"
I'd grab a tissue and take care of the problem,
and that'd be it.
Then after day 4 of doing this without any issues,
i went to grab a kleenex out of the box
and Marshall lost it.
He started screaming "no! back!" once i realized
he wanted to pull the kleenex out himself,
i put it back and he came over and did it.
And all was calm.
And for the rest of the day, he had to pull out the
kleenex. I get it, it's a neat concept... the kleenex box.
But then the next day, when i stood back as he
yelled out "nose" to me so he could get the
kleenex, he was mad that i wasn't getting it to wipe him.
Let's just say, i am often stumped. lol.
Marshall has decided that he
needs to get out of the van first when we get home.
This started a few months ago when
he suddenly took interest in the newspapers arrival
on our door step.
He wanted to be the one to see the paper first
and then carry it in the house for me.
There is not a paper daily,
so that was a bit of an obstacle initially,
but it's now ok to say "no paper today, maybe tomorrow"
without a meltdown.
D is really good and is ok to let Marshall
get out of the van first, even though they get out of the same door
which is on her side.
There is room in the van for her to move out of the way
as Marshall plows past her to open the door.
If i reach back and unbuckle his sister first,
Marshall starts screaming
and clawing at his seatbelt all frantic to get it off.
Even though D always lets him get out first,
even if i unbuckle her first,
he still goes into panic mode each and every time.
Here is one place where i won't cater and unbuckle him
first... just because i think he can learn that
D has kindness and will allow for him
to get excited about the possiblitiy of a newspaper
on the doorstep, regardless if she is let loose first or not.
Ok, so i have given you plenty of examples
of the daily challenges we have going on
around here.
I don't know if i'm doing the right thing with Marshall.
It's something i'm going to need to ask
more people about.
I just don't know if me not allowing for some of these things
to take place
(example: carry his food each time, let D get out first...
and there are many others not mentioned)
will benefit Marshall or not.
I do understand that order and sequence is something
that kids with Autism really take to.
And for right now, it's not really harming anyone
to adjust things to make Marshall happy...
if i can figure out what it is that he wants to happen exactly.
M and his sister share a room,
and all of their toys are on the one wall.
Marshall has decided that the toys belong in their
designated place, and they cannot be taken
down to be played with.
This is a definite problem.
I will fight him half of the time when his sister
is the one who wants to play with these things,
but he does get very angry and as though
his brain cannot funtion without these toys staying in their place.
So it's hard to not put things back
to get him to a place of calm and hopefully, reasoning.
Maybe i should be going in there and
rearranging the toys every other day
so there isn't a perfect home for everything? I dunno. lol.
But is 'catering' going to make Marshall
want to control
more things surrounding him if i keep allowing the things
that we have already decided we will cater to?
Or will he let other things go because i
let him control the ones that he really wants/needs to?
Is this going to be a problem that starts to affect
his ability to learn?
I just want to get into Marshalls head.
Anyways...
This post has been more of a rant than anything.
But i needed to share.
There will be some kind of positive results from
all of this at some point.
Often i wait to blog once a situation has come full circle.
Well, this time, i'm just laying it out there.
I will seek advice and help with all of these control issues
before it becomes too overwhelming.
Right now, it is what it is and i'm not too stressed
out about it.
I trust that at some point in Marshall's life
he will understand that God is in control,
and hopefully he can find some peace in that.

Tuesday, January 10, 2012

Reflecting 2011

I wanted to do a more detailed post about Christmas and
all of the family gatherings we attended,
but we are now almost mid January
and i am over it. lol.
All in all, Marshall did SO well.
We had several family gatherings in unfamiliar places
with tons of people and Marshall did great.
I was blessed in December
by an annonymous giver from my church
who was moved by what i shared with my church
in my Thanksgiving post.
2 gift cards:
one for PC and the other for the
Wild Orange Spa.
I am looking forward to spoiling myself with a
professional massage... although i'm kinda scared
as i've never had one, but mostly excited!
The support and love i have felt, we have felt as a family
over this past year has really blown us away.
What a crazy year 2011 has been.
A rollercoaster.
Going from not knowing why M was struggling,
to getting the diagnosis of Autism,
to daily intervention and therapy,
to seeing the best come out in my son.
To being proud of who he is and
of how much he has grown.
To stand tall with my head held high
as i see his motivation and determination to not let
this thing we call Autism, hold him back.
He will do amazing things in his life....
i mean, he's already transformed mine!
Life is much more day to day for me now.
I've always thought that it was my purpose to be a Mom,
to raise, guide, teach and love my kids
and to show them what it means to live in Christ.
I never thought it was my purpose to
face the challenges of a child with special needs.
But God gave it to me,
He entrusted me with it...
He believes in me.
That's pretty cool, and i'm honored actually.
It's always been said that it takes someone
special to work with anyone with special needs,
well, that's me now, i'm special :)
I married a man who already had a daughter,
and 10 years ago i thought that although
it was not an ideal situation to get invovled in,
that God had purpose there.
I believed that He felt i was strong enough,
had faith enough, to be a stepmother...
to be a loving, stable person in this childs life,
to show her God's love.
I thought that this was going to be my challenge in life.
When Marshall was 3 months old,
his sister D who was not quite 2 years old
had a couple of seizures
that landed us in the Children's hospital
for 4 days in isolation with many tests...
that all came back with no results.
I wondered at that time,
what D's future was going to look like?
Were seizures going to stick with her and effect every part
of her life? I prayed that it wouldn't...
but i knew that God had a plan that was purposeful,
and i still trust that.
Last Spring we tried to wean D off her medication
and her seizures appeared again :(
We are so thankful that the small dose that she is
currently taking is enough to keep the seizures
under control.
But we now know that she does have Epilepsy.
There's still a chance that she will grow out of it,
but who knows.
Two months after finding out that D definitely has Epilepsy,
we got the diagnosis of Autism for Marshall.
It's a lot to take in, right?
Well, it felt like a lot...
and there were also some extremely stressful things
going on with my stepdaughter and her mother
at that time as well.
I have always believed that
God won't give you more than you can handle.
Well, honestly, i had a lot of doubt in this
promise in dealing with so many things at the same time...
and they were all BIG things.
I remember just laughing and saying this promise to my
family each and every time something else would
make it's way onto my plate.
All of these circumstances
made all of the other stresses that i'd complained
about, felt burdened down with at times in my
life feel like peanuts.
I was almost shameful of how much i had complained in my
heart in years past.
Before my husband, i dated a guy for 4 years
through highschool.
I thought it was love, meant to be.
But when it ended and i thought back to it,
i thought it wasn't fair to say that i thought i loved him
and that he was 'the one' but now i didn't love him anymore
Rather, i like to say that
I loved him as much as i knew love to be
at that time in my life.
It wasn't until i met my now husband,
that this came to me.
And it was only because Danny showed me a love
and a relationship surrounding communication
that i fully understood what love is.
I can use this thought to relate to my faith and
to what it truely means to trust the Lord.
I thought i'd been doing this my whole life...
until it all crumbled down around me
and all i really had left was faith.
Life gets really simple when you stop thinking
and trying to plan and shape your future. lol.
I am happy to say that through all of this,
although there were some very low points for me,
majority of the time i held my head high and i held on to
God more than i ever have.
When you are that broken down,
what else do you have but faith and trust in the God who
has carried you to this point?
Giving up or turning from Him was not an option for me.
God is too instilled in me and i'm too smart for that ;)
Leading up to Christmas, a lot of the heavy issues
surrounding my stepdaughter and her mother came to rest.
D is back on her medication and doing awesome in every way.
Marshall is a very busy 3.5 year old, but he is thriving
and i am constantly referring back to 6 months
ago when Marshall was so hard to handle.
I cannot believe how far he's come in such a short
amount of time... it gives me such peace that
he will be ok.
As i just typed that last sentence, it struck me that
i have never thought like this with
my daughters.
My hopes and dreams for them far exceed 'ok'.
With Marshall, i just can't see his future yet.
For him, ok is wonderful...
for now anyways.
I am at peace with knowing this.
In my reflecting, i have thought to my future,
and to how i can see myself sharing
2011 with others, how
"it was the hardest year of my life".
But i have to stop myself from thinking that,
because although it feels like the only place we can
go is up from here, that may not be God's plan
for us!!! Perhaps things are going to get harder...
oh Dear God, please not!!! lol.
Anyways, life will continue to move forward
in 2012 and i am excited to take on the
challenges that God presents
and to rejoice in the times where we realize,
time and time again,
just how truely blessed we are,
how blessed I am.
Happy New Year! or rather,
Blessed New Year :)