Month: July 2004

surveys

another survey

criscollrj
You’re wearing: short overalls, striped shirt, underwear, bra, gold earrings
You can see: monitor, stuffed animals, speakers, disks, phone
You can hear: Arthur on PBS, air conditioning, typing fingers, daughter opening ice cream bar,
Favorite colors: blue, purple, green, mauve, sea green
Favorite songs: He reigns, You raise me up, Amazing Grace, Heart of Worship, new Evannescence song
Favorite movies: Pretty in Pink, Sixteen Candles, Dirty Dancing, Pretty Woman, Just Married
Favorite stores: Kohls, Walmart, ToysRUs, Target, Aldi’s
Favorite people: Husband, son, daughter, son, friends
People you love: My family, best friends
People you hate: No one
That get on your nerves: Crashing computers (this one), not enough time, not enough money, things not going according to plan, lack of sleep
That you did today: Went to Y with kids, reformatting computer, backing up photos, made breakfast and lunch
That you’ll do tomorrow: Taking RJ to speech therapy, cleaning, taking Colleen to VBS, visiting with friends, cooking
People you miss/haven’t seen in 6+ months: Vicki, Lisa, Jeannine, Grandma, Grandpa
People you have dated/”gone out” with: DH!, Andy C, Andy A, Chuck, Ray

5 Things brought to you by BZOINK!

 

autism, Pans/Pandas, residency, writing

poem

criscollrj

2020 – it has been heartbreaking to re-read all this.  One of the hardest times of our lives — 2003-2004, as well as 93-94, 97-98, 2010, 2016-2019.  Autism, deafness, and this possible Pans/Pandas disorder…. so much heartbreak.  So grateful Chris (and Ryan) are doing better now.  Here Chris had to wear a helmet as he was hitting his head on all surfaces….  that lasted a few months.  

Comments: a poem about Chris, it’s been a while.

Felt good to write something. I think I got a lot out this way.

to say goodbye to you would be so sad
the child of my youth
all my life I dreamt of your arrival
it made my heart so glad

we waited years for you
you were born and we clung to you so tight
checked you in the night, looking for your breath
we were so careful to do everything just right

our firstborn son, you began to slip away
we didn’t notice at first, just thought you were shy
or quiet or the deep intelligent type
when you ceased your speech at 2 I thought I’d die.

to see you hurt yourself, the precious skin and self
that formed inside of me, then was born
is catastrophic and deadening, the greatest tragedy
of our lives, the event we always mourn

more than autism itself, the pain, the violence
that you would be in such pain,
the sound of fear is perhaps worse than just the silence
that we would hear if you were just happy but quiet, playing in the rain

like you used to do out in the pool, when you were five
the rain beat down but you were happy with your symphony
of bubbles that rose above you like a crown.
you always loved the pool, the bath, the river, more than any pony

that any other boy would like
we were sad at your difference at times but loved to watch you smile
and now to hear your laugh instead of your cry
would answer our prayers, at least for a while.

The whole family needs to be kept safe and strong
whatever it takes to help you all grow
and to also keep the girl and little boy growing up in health
I pray an answer comes soon, that we will know.

It wouldn’t really be goodbye, if it comes to a new home
it would be a place that could help you thrive
in your own way, in your own time
if that is the decision that is to arrive.

We would still see you often and love you so much
though of course we hope the answer is that you stay
whatever happens I know that the Lord is with us
And will give us strength to face each day.

@dh 7/5/04

 

autism, college, medications, music, Pans/Pandas, residency, sleep, waiver placement lists, waivers, weight

another old copied post…. things are not good :(

criscollrj

 

 

User: dori

Comments: feel like the straw that broke the camel’s back just happened – my aide just called and asked if I thought Chris would hit her today how do i know… – I said I didn’t know, he’s mostly hitting himself, but that he had hit me some especially on Saturday. She said she’s not coming today and that she’s going to call her office and explain how much he’s hitting her (he did hit her a lot on Thursday – she had a sore arm from it) and whether they still want her to come back – what do you think will happen?

2020 – yet another pans/pandas note… is that what this aggression was from??

I told Rog if I don’t have an aide I think we will have to have him go live somewhere else. We may do it this week. I’m so depressed. I can’t do this with no help. My mom did help me yesterday but he was hitting her and pushing her and she’s only 5’4″ and about 105 pounds so she can’t take too much -she’s also 61. My MIL isn’t even coming around to watch him anymore really – she’s pretty sick right now.

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