New pic of Chris! Ryan’s is coming…
He’s back at school! Thank God. He’s gotten on the bus 2 days straight now. Still some behavior problems – but we’re working on it.
More soon!
d
Tag: Chris
Welcome back to morning naps
Chris HAS been sleeping well at night for months, but was having more assertive (to put it mildly!) behavior during the day. After struggling for several weeks (months?) with his having trouble obeying limits and NOT pulling on our arms where he wants us to go, pulling us along the road, hallways, kitchen, wherever something is that he wants, or trying to leave places he didn’t want to be, we called an emergency appt. with the psychiatrist. He is a very caring doctor and listened to us and actually got to witness the “wanting to leave” behavior in his office, as did his staff in the waiting room (they called in an assistant for us to help as I had Ryan with me too).
The perfect post
All week I’ve been wanting to post in here, and I never have the time. I keep composing posts in my head when I’m away from the computer, but once I sit down I never get to it. Hopefully one day the two will synchronize…
My dream is for this to be a profound journal about our thoughts and experiences with autism and deafness, and also my life journal, and an interesting photo blog, and a sharing and teaching area where we can both learn from others and have them learn from us. I know this is not a goal that one can loftily achieve immediately – especially when one is typing with a 4 1/2 year old child on their back climbing on them in the chair —
yee haw..
Ahh he settled back down.
no – he’s not.
A few minutes later – we’ve looked at some Flickr pics again we took and now I’m going to try and write more.
A poem —
Wow, I just found this poem as I was packing and sorting notebooks in my laundry room. I wrote this 8/26/90, just 3 months before Chris was born.
curled up tight
in a cocoon
hug the branch
call it home
afraid to fall
out of the shell
to unknown
dangers
can the cocoon
stay home
safe inside me?
what would this
safety bring?
dh 8/26/90
That really struck me – my 14 year old Chris, still in his cocoon, of autism, and deafness
thoughts…
hi – house thoughts —
We are almost done with our 4 day wait to see what the school says about Chris. To summarize – our offer and financing are approved. We are waiting for the school district in the new area to state to us whether Chris can stay in his present school that is meeting his needs. We do not know what they will say – have no idea – though common sense says they would have his best needs at heart.
I had said from the beginning that if they say Chris has to leave his school we would not buy the house. I have a friend (one of my best friends) that is trying to convince me to think this a little less black and white. She is stating that perhaps the new school WOULD have a viable option for Chris even if they do not approve his going to his present school. She is also saying to think of Colleen’s and Ryan’s needs. They are attending the City schools, which Chris is not attending. Colleen has just entered the middle school and for the next 6 years will be dealing with attending an inner city school. Ryan will just begin Kindergarten in 2 years but then of course by middle school will also be dealing with the same as Colleen (though of course by then Chris will be grown and probably living somewhere else so we could probably move by then.)
She is just saying to keep an open mind and keep the whole family in mind, not just Chris. That is very hard for me!! But she is right.
I also don’t know how long Chris will be with us in our home. My good friend Kathy is just now finding placement for her autistic/ADHD son. Her son is out of control, running down the street, banging on windows, and has to have the police called on him regularly. He is almost 16. I hope Chris doesn’t get to this place, but he IS ALSO leaving without permission and going down the street. I know we’ll have a fence at either place, but her son is at the point where he just hops fences to get over them. So I’m starting to wonder if I’m being too narrow minded basing this decision TOTALLY on Chris. I’m adjusting my thinking, though I don’t know what I’ll do yet if they will say no tomorrow about him attending his present school….
What is good for Chris at this new house is we’ll finally have a place to set up a work area for Chris that will mirror his work area at school. He will have a rocker for music time, an exercise bike, and a reading area and a icon/object schedule. We were going to start this past summer on this but didn’t know where to put the exercise bike and chart! Now we’ll have a place, whether we decide it should be in the basement family room, or in his bedroom.
Thanks for listening…..
dori
house!
we’re just waiting on a snag about where Chris is going to school, and if that resolves this house will be ours!
(not valid link) https://criscollrj.com/photos/displayimage.php?album=12&pid=957&slideshow=5000 is the new location of my house pictures. That photo site of mine had been full – it’s still a little messed up but I’ll work on it slowly 😉 — it’s fun to have my photo site up again!
Yawn….. grrr.
I’m not very happy about the fact that Chris is up at 2:15 a.m. Just Sunday night he stayed up all night until 6 a.m. He seems to be doing this more often. Last year he started sleeping regularly July 15 with his hospitalization/med change. From july 15 until sometime at late fall he slept every night, then he had 1-2 nights he was up and he started suffering from his ear infections. All winter long if he stayed up it was usually an ear infection. It settled down again and he slept again for months and then last month (july) was up maybe 3-4 different nights – then, his swimmer’s ear. I wonder if he’s getting swimmer’s ear or ear infection again. My worst fear is that he’s losing the effect of his meds…. it’s happened before. (But not on these meds)
I am pretty tired and hope he sleeps soon – tomorrow is a very busy day and even at this point if he falls asleep right now I’m looking at about 4 1/2 hours sleep before I have to get up. We are going to Ryan’s last day family event day with an ice cream social. My mom is helping me. She is also watching kids so I can get a haircut. Then Thursday we’re going to a local waterpark (Rog will be off) for a fun day – Colleen had coupons from school. I’m not sure how much I really want to go but I know Colleen will enjoy it.
Ryan has had a lot of struggles at his summer preschool. He started hitting and even biting. They feel perhaps they didn’t have enough one-on-one attention for him. At his regular school he has a one-on-one. It will be interesting to see how his regular school year goes. His regular teacher in the school year seems to still be looking to make sure he’s not autistic, although the neurologist has ruled it out for the moment.
I really would like to run away somewhere, for just a little while….. only 1 more month (less than!) til Ryan goes back to school and I can take a BATH! or a NAP
DANG, i really wanted a shower, tonight too – was not counting on an all-night Chris party.
Ryan will be going to speech therapy 4 mornings a week in the school year. Since Colleen starts school at 8:00 instead of 9 I’ll be taking him to therapy at 8:30. It will be good to be done with that early and back home. He will get on his bus then M-Th. starting September 6 at 11:45 and if he rides bus home he’ll get home about 3. I’m hoping they let Colleen ride his bus – we’ll be in the situation where Chris gets home at 2:30-2:40, and I’m supposed to pick up Colleen at 2:30-2:45, and Ryan at 2:45. They said they’d probably have her go to Ryan’s class (they’re in the same school – preschool is at the middle school) and I hope they just let her ride his bus home. Or else I’ll have trouble being in two places at once!
Then I have to make decisions on several things – last year we did swimming on Monday, skating on Tuesday, counseling (for Colleen) on Wed., art (Colleen) on Thurs., and chiropractor (for all) on Friday. This year I would be adding on OT for Chris that is special at a center, possibly the same center for Ryan, and Colleen wants to do girl scouts and 4h Guinea pigs/small animals. Something will indeed have to give.
I am pretty sure I am not doing regular Christmas cards this year – I always do them and enjoy it SO much but this year for a little break I think I’m going to do holiday emails right at Thanksgiving, and then only send maybe 20-30 cards to family that doesn’t have email. A friend of mine and I plan to do some homemade goodies/crafts for Christmas gifts.
babbling to stay awake…….dori, not happy at 2:30 a.m.
Thanks for prayers —
Chris went through the test fine. I’m so relieved about that.
About the results —
he is severely and/or profoundly deaf – 80-120 dcb. Apparently this is almost totally deaf. He may be helped by cochlear implants. So obviously something genetic here. Both boys are getting blood tests to check on genetic causes, and my daughter needs to be tested too.
and our refrigerator’s broken (for the 3rd time in 3 weeks).
more soon —
I’ve really cut back on my computer time —
and it shows! My house is much cleaner and I think I’ve really caught up a lot on paperwork. I probably won’t be here that much now as it’s summer break and my kids will be home all the time — except for brief periods in the morning while one or the other will have preschool/special needs camp/bible school, etc. I haven’t really been reading as much either – but will come back when I have time.
Pray this summer goes well for us – it can be a challenging time as Chris is so used to going to school and doesn’t understand why he’s not going now!! And here I was all set up to blow up the little wading pools and my stupid air pump is GONE – I can’t find it. It’s too hot to walk to the playground. So he’s in the shower AGAIN.
But, all in all, things are much better than LAST summer…
I LOST 5 POUNDS!!! so far…. 50 more to go!
survey: Continue reading “I’ve really cut back on my computer time —”
poem
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. Â
2024 – we had more heartbreak in 2024 with Ryan. Haven’t even written in here yet, but things are a lot better now, but it seems the pendulum just has to swing around every so often… how strong are we supposed to be?
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