Living & Loving, Autism & Deafness
Our Journey with our loved ones and our lives
sure hope you feel better soon!
My name is: dori
I was born on: 2-22-65
I am a: musician at heart.
My hair colors are: Brown
My eye color is: Brown/green
My shoe size is: 8 or 8 1/2
My height is: 5’3″
I am allergic to: Dust, molds, ragwood, outdoor grasses, cats, dogs.
I live in: NE Ohio by the Lake.
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.
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
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.
Continue reading “another old copied post…. things are not good :(“
I just want to do something different but don’t know what. I’m happy, but… oh, I don’t know. I love my kids, my husband. I love being a stay at home mom. But my dreams of school seem to be on hold again. It’s so hard. I know my kids come first. Here’s some postings from my moms group which just say more about all that
User: dori
Comments: I’m going to try and STOP talking about my decision stuff SO much after this because I think you’re all getting sick of it. But I need to just reply a bit more to stuff from the past few days. THEN I’LL STOP so you don’t kill me :P. So I’ll try and keep it short and first will just update you on the present.
Continue reading “Something’s missing, don’t know what. Some cool surveys, though.”
KIM, thanks for your comments – you got me thinking about school again and about a conversation Rog and I had a few days before. I am not DEF. going to school in the fall. I’d LIKE to but things would have to be a lot different in a short time. Chris needs LOTS of work, and so do the other kids. Our house is getting a lot better on organization but it takes a lot of time and there’s two more rooms to remodel so that will bring more chaos. I’m simply going to gather information so I’m ready when the time comes. Do our financial aid papers, apply, etc. My gut feeling is that I won’t go until at least winter. It may be not until 2007 when Ryan starts kindergarten. Just don’t know!
Chris had to have surgery on his ear on Wednesday because he hit it so hard he got cauliflower ear. We have been watching over him at home – he seems better today so he’s relaxing a bit in the shower and I thought I’d take a minute here. Those of you who are inclined, I would appreciate prayers/thoughts for him as his ear heals. He is on some new meds that we believe are helping him now sleep at night – it’s been 5 days now that he has slept well. I hope it also calms him too so that he doesn’t bang his ears or head.
When Chris was in the hospital last summer I found this Bible verse. I have claimed it again as my promise that Chris will be guarded over by the angels. Psalm 34
17 The righteous cry, and the LORD heareth, and delivereth them out of all their troubles.
18 The LORD is nigh unto them that are of a broken heart; and saveth such as be of a contrite spirit.
19 Many are the afflictions of the righteous: but the LORD delivereth him out of them all.
20 He keepeth all his bones: not one of them is broken.
I pray that Chris will be delivered from this ear problem with no damage or further danger. I know the Lord is more than capable.
I know I need to go back to attending church. I want to get back into music ministry but the Lord will have to guide me back into that – I don’t see it being possible right now.
I was in the choir at churches off and on from 1987-1994, then 1999-2000. I greatly enjoyed it, and also did special music solos with guitar, and also sang for the kids in kids church that were preschool age. That was fun (that was in 2001). When Chris got too big to handle and had started all kinds of health problems, I had to quit everything. I miss it all and pray I will be privileged to be able to do it again.
BTW, I was definitely diagnosed with ADHD yesterday at the dr. All the IQ testing is done. I’m fairly high on the scoring with the attention part being lowest, no surprise there.
Housework calling….
dori
I just added a new icon of me playing the guitar when I was little. I have seen other LJ journal users do this and I’m stealing the idea!
Had another interesting session with my now weekly doc I’m seeing re: My ADD. He’s doing IQ tests with me. The math word problems were very hard for me! He said that I did way above average on them but that it took me excessively longer than normal to perform the calculations. And he said this was very normal for an ADD person. I will continue the testing next time. I also had been told (don’t think I posted this?) that I have a problem in my working memory, that showed upon the IQ tests, that I have a good short term memory except for the part that involves organization and working with what I’ve learned. Thus, the problem I have with organization and multi-tasking. It’s amazing how these tests can show all that!!
So, we talked about the book I wrote in high school, that I want to complete but was flabbergasted that I haven’t worked on since 1996! We talked about all the irons I have had in the fire, and always have had in the fire. My nick in high school (my initials then were D.E.) was Doing Everything, in the class nickname list. They should have added, doing everything but not getting any of them done!!!
So, when I try to juggle all these balls I can’t control them and they come crashing down. That’s what happened, when I lost my job and lost control of my home organization, etc. So now I’m learning to juggle from scratch. One ball, then maybe two. Not twelve.
He was proud of me that I’m on a daily cleaning schedule now, and that I’m not adding 100 new things to my list. I would like to pick something eventually to add — my book, or extra guitar practice, or something. But right now I’m not sure what!!!
Well, off for that cleaning schedule (did half my household tasks today).
dori
So very busy life for me!
Ryan is talking more that I’m home, for which I’ve been so grateful. I need to work with him even more, read to him, etc. I have been taking him to a music class at a local organization that is very fun! He also likes to play my guitar 🙂 This means I cannot really play it at that time as he grabs all the strings ;). I hope to get caught up enough on housework so that I can take 15-30 minutes a day to practice by myself on the guitar. I would like to get good again like I was in high school/college.
I still dream of getting back to college to get my music therapy degree. It would be cool to be really in practice on the guitar by then so I could progress a lot farther with some lessons there (as guitar will probably be my instrument of study there, though voice would be great too!).
Well I have a very busy day today with my mom coming over at 9:00, and it’s 5:30 now, so have one hour to scoot through kitchen and laundry room cleaning before I have to get Chris up for school (bus comes at 7).
Someday I just want to go slow and ramble for hours on here….
Baby boo is up and keeping me busy, so this will be short. He is doing good — he is talking more since I’ve been home!! He also has not thrown up since I’ve been home (at day care he was throwing up every few days?!!!). We were ready to take him to an allergist to see if he had food allergies, it was happening so much. Now he’s home, boom, disappeared!!!
I have accomplished many household tasks — organized many cabinets and cupboards, rearranged living room, etc. Busy busy! I have SO much more to do. Mountains of clothes to put away in our bedroom – that will be today and tomorrow’s task. Today is a birthday party for DH, the big 4-0!! So we will be at his mom’s – she has nice parties for all of us in her home so that we don’t have to worry about them here (our house is tiny, like a closet, especially with us 5 in here!!)
Well, so I’m the busy SAHM and still hope to go back to college, but don’t know when that will be. I want to go for music therapy. I am hoping to do the prerequisites close by, and then the remainder I shall have to drive about 1 hour away to fulfil. THis will be years away, though, I’m sure!
I am trying to lose weight again — I have been overweight since a child but on and off diets. After RJ was born I haven’t really sustained any effort to lose weight – just now though this Tuesday I have gone back on a plan that I was on in the years before he was born. I’d lost 25 or so pounds then so I hope to have success again! I need to lose about 60 pounds. So far I’ve lost just 3/4 of a pound, but that was in 4 days 🙂
All for now, dori