18 years ago —

With Colleen’s birthday coming up on Tuesday I felt like posting some publishable parts of my old diary, from 5-12-94. Hard to believe it’s been 18 years.

Work told me I’m definitely getting my three-week vacation pay, three-week sick leave, and they want me to do tapes at home. I also may be able to go in and work some mornings and my mom may be able to watch kids on Fridays if I need to work.

First things first, I’m 2 cm. dilated (as of last Friday) and am working only one more week. I’m ready to enjoy this summer off with my children. It will be beautiful. I know I will be tired and frustrated sometimes, with a new baby, more work, less sleep, Chris’s reaction, Chris’s speech delay, worry over finances. Financially we are pretty secure right now but I only have eight more weeks of pay coming. Continue reading

Teaching Enjoyment

Ahh, so many ways to look at that. I thought of that title the other day while trying to help Chris with some things. And as my mind will play with words I realized there were two ways to look at that.

The first way is how when trying to plan events with Chris, I just wish he would show clearly that he enjoys them. I wish there was a way to look at Chris and say, wow, he really loves this activity!! We took him and Ryan to a Fall Festival, which was wonderful!

 

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And as we were attending the event, which was a pumpkin patch, food, guitar playing, animals and a corn maze, we could not get Chris to stop and look at anything. He did stop and eat a hot dog. He seemed happy, and he really did seem to like the corn maze. I just wish we could learn how to get him to stop and look at things, the way Ryan does at this point. We will keep striving.

And is there a way to teach enjoyment of things to Chris and other children/adults with autism? Why for example do we have trouble with this with Chris, but not with Ryan, when they both have autism? Ryan, however, is much worse with hitting randomly, throwing things, and running off. A different problem, but still a problem. Autism spectrum is a mystery to me still . . .

So then of course the other side of the coin is teaching enjoyment as in the enjoyment of teaching. I was thinking about that as well as I was trying to think of how to teach our Chris and Ryan. I do enjoy teaching, though I never wanted to do it in the traditional sense of a regular school teacher. I now surprisingly find myself going in the teaching field as a special education teacher, which I never expected. I do feel God has led me into this journey to get my teaching license, perhaps to help me learn to enjoy teaching more? To help me become skilled at it? I thank Him for the opportunity which has come unexpectedly, and can’t wait to see what He has in store for me through it, both with the boys and with the world and my career.

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Just entering the world of autism phone apps–

Autism Apps (page 3) – Android


A while ago our speech therapist shared with us that autism applications could be found on the Apple Ipad, Ipod Touch, and Iphone.

Actually drafted this much of the post a while ago, planning to come back and add a lot of links.  But I haven’t had time to really put a bunch more together, so am going to post this much, just to give some first guidance.

http://www.androidzoom.com/android_applications/education/model-me-going-places-autism_udlo.html is an excellent social story program


http://www.androidzoom.com/android_applications/communication/vocal-slides_ijin.html you can indeed match pictures to sound files and the child can click on them – however they are not thumbnails. I need to find out if they can be.

These are free – I will post more free apps very soon, and also a few that don’t cost a lot as soon as I preview them.

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Overnights —

101_0016Actually took this picture at dusk in December, but it was a neat example of darkness outside and how I captured it with my new camera at the time.

 

But overnight, such a peaceful time.  You want everything dark, and quiet, and to sleep solidly and restfully.  And you want that comfort and peace and routine for your children.

 

I don’t understand why many children with autism cannot sleep at night.  Chris is up now, it is 2:45 a.m.  We thought he would be up – he has this weird giggle that starts about 5 or 6 p.m. on nights that he won[t sleep,and strangely enough like the beginning before they say “Wipeout” in that famous song.  Whenever he makes that giggle Rog and I look at each other and usually say, “Wipeout,” and then say, or think, “Up all night.”

 

I am glad when he stays up all night at our house, as that means the next night when he’s at Rog’s mom’s and dad’s back with him staying there too with him he should sleep.  We all need to share the care.  I just wish I knew why he doesn’t sleep.  We have tried about 20 different medicines many of which make all people sleep all of the time, seemingly.  But not Chris.  He is on melatonin but it doesn’t so anything – – – Clonidine worked for 6 years but wore off – we tried it again but it didn’t work.  Geodon worked for about 3 years, then wore off.  Those were the only two meds that ever worked.

 

http://www.webmd.com/brain/autism/helping-your-child-with-autism-get-a-good-nights-sleep?page=2 may help some individuals who can’t sleep with autism.  Hmm.  I hadn’t heard of the ending item, bright-light therapy.  Maybe something to bring up as another treatment?

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About running –

As the spring arrives, I have been thinking about running in various ways.

  • I have used it as a thing to worry about – as spring comes every year, the boys would get more boisterous about escaping the house and running off (or in Chris’s case, usually walking very fast).  As far as I’ve heard, Chris has not started yet this year with this; and here Ryan has not either.  But last year, it was very difficult with both boys, with both households having installations of backwards locks where we need keys on the inside to let anyone out!  This has not happened at all yet this year,but we wonder when it’s going to occur.  We are hoping and praying by this time the boys will be able to communicate by words or icons that they wish to go somewhere consistently and not feel they have to “escape”!
  • In Ryan’s case, I am praying when we go to the park this spring (whenever it dries out enough!) that he will not run away from us in the parking lots like he did last year, not that we didn’t hold his hand, but he did it in a different way, just suddenly taking off from the middle of the playground where he had been swinging or climbing, as a game where he would want us to chase him suddenly, but in a dangerous way, usually ending up in the street or parking lot.
  • In a different vein, with all the challenges we have been having, sometimes my (and all of our) thoughts can lead to wanting to just run away, run fast, run far, to a place where there aren’t quite this many challenges, where people think clearly and act rationally all the time, and there is no more pain and sickness, and sleep is sound and not interrupted, and – wow, sounds a lot like the heaven we’re waiting for, doesn’t it?  Yes.
  • Then of course running reminds me of exercise, and how little of it I’m getting at this point – lol!  Time to get the wii fit going now that I’m done with school in a week, and only going online for summer.  Time for the whole family to start getting fit –not necessarily running, but walking, indoor cycling, calisthenics, et cetera!
  • And finally – 1 Corinthians 9:24 – “24Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize. 25Everyone who competes in the games goes into strict training. They do it to get a crown that will not last; but we do it to get a crown that will last forever. 26Therefore I do not run like a man running aimlessly; I do not fight like a man beating the air. 27No, I beat my body and make it my slave so that after I have preached to others, I myself will not be disqualified for the prize.”

Lots to ponder as spring gets into full swing, my winter/spring semester is almost over, the kids’ school is winding down, Roger is healing in his body and preparing for when he will return to work, and I look forward to a break and time to get my house (and mind!) organized, and start a new semester.  May I not be so close-,minded with school and duty that I forget including time for us to enjoy the summer weather, playing outside in safe areas, and also making sure I take time to have devotionals, prayer time, and, yes, exercise.

 

Happy spring!  (this is last year, but they’re already budding now!)

 

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Revising and tagging, and studying

Of course in the middle of fall semester (perhaps exactly in the middle?) and that is keeping me very busy!!  I tend to do algebra at the beginning of the week mostly and biology at the end.  Then I tuck transcription in usually Wed/Thurs (job due today, so nothing different there).

In the few evening hours I’ve had and sometimes early morning I’ve been going through ALL my blog posts here, starting ins 2003.  They all needed tagged and categorized.  I don’t even really understand the difference between that so I’m doing both – tagging and categorizing, mostly the same titles.  Ha.  If that causes trouble I suppose I shall find out somehow- but at this point it seems fine.  Also adding the pictures back in where I can where they were”lost” going from Livejournal to wordpress.org then to wordpress.com then to blogger then back to wordpress.org. 

My goal is to have this blog ready for real publication, where I post it on autism sites, etc., and really try and get some help and recognition for autism and deafness.  Chris needs a lot of help.  I DID get a comment http://criscollrj.com/2010/05/23/the-brick-wall/ from a person at the National Deaf Academy, who found my blog online, and I was thrilled about that.  If I can just get all the tags done and the blog totally organized, and then keep trying to add to it, perhaps it can get top recognition and the boys can really get some help.

So then, of course this with studying, working, and everything else I’m doing, challenging, but it should be SO worth it!


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Fall semester

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When I was a little girl I remember labeling and assembling all my school supplies weeks before school started.  I loved the way the notebooks and pencils looked, all new, crisp, and shiny, and the way they felt smooth and clean in my hands.  To this day I still have a habit of ruffling the side of book pages, feeling absent-mindedly how smooth the side of the book feels as I read or listen in class.  I don’t know what it all means but I do know it hasn’t gone away.  On a side note, I think Ryan has inherited my addiction to school supplies – he loves his notebooks and bookbags very much – it’s so cute!

 

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It is a good feeling to have gone back to school after wanting to for about 15 years.  I remember in 1995 first considering that I would like to go back to college after that time being absent for 9 years.  When I graduated in 1987 I had been going for 3 1/2 years, and even though I didn’t realize it at the time I think I needed a break simply from not knowing what I really wanted to do with my life.  Continue reading

Seems fitting to attend a great barbecue the week before school!

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Sometimes it’s challenging to get through the summer easily trying to keep two rambunctious boys happy and safe in the heat.  But all in all I think we all accomplished this this summer.  We have worked as a team – Chris stays at his paternal grandparents’ still (while we await, seek, and research the appropriate placement) and Roger stays over there a lot to watch him.  Chris is very astute and is trying his best to learn the ways of unlocking doors so he can get some freedom outside.  However, their safety (Ryan will escape and run off as well) is our highest concern so we do have some fancy key locks on the doors at both houses.  So it is up to us to get them out as much as we can for their activities and exercise.

 

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So all and all we were pleased with their summer programs – next year I would like to get Ryan to Chris’s camp even more days – we got a grant this year for him to go 6 days but if we can get three grants then next summer he can go 18.  Chris went all summer from June 22 or so until this coming Friday the 20th.  This is where they met for camp – we started taking Ryan there a bit a few days this summer:

 

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It was very nice and also had a wood path.  The boys would walk with their class in the morning on the wood path.  Then by afternoon they’d usually visited another place and ended up swimming in a big pool across the county.  Really nice program.

 

Colleen stayed busy with different friends, often attending anime events and swimming. 

colleen and friends

Rog and I worked, and went out of town for business in June.  We’re going again the first week after school starts.  I also made it through computer class and Algebra 850 – intro to algebra.  I just finished that about 2 week ago and was happy to have passed (it was hard!).  On a break now, working on some transcription but not tons and going to be trying to get the house in shape before work and school again (school starts week of August 30 for me – biology and intermediate Algebra).  0809101226 Speech therapy and certification in autism and deafness is still the goal, Kent State.

 

Working with Congress at this point with several liaisons to try to find away to get Chris into the program at NDA National Deaf Academy.  We sure hope and pray it works. 

 

Watch the video about NDA’s autism/deafness program  I just feel so excited that this could be the right program for Chris.

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The brick wall

Getting Chris into the placement he needs (National Deaf Academy, which will meet his psychiatric, physical, deafness, and autism needs) has proven to be quite a challenge.

Chris recently underwent a med change at our local hospital due to increased agitation and other situations. However, the next step necessary to complete this med change is admission into a psychiatric stabilization unit and/or a nursing facility with a psychiatric lock-down stabilization unit. The usual pattern is that the individual gets the med change, has the psychiatric stay in the middle, and then after 30 days would be admitted into a residential center to live or go home if that’s appropriate. Now, Christopher has a likely residential center, that he can be admitted to in 30 days. It’s sounds pretty good, although it’s not perfect, and doesn’t have the extra autism and deafness therapies that Florida will provide. But we believe it will provide Christopher with a structured environment with professionals to meet his physical and medical and psychological needs.

It was very hard to come to this conclusion that Chris needs to go back into residency, but with his needs it had become apparent, and with a placement available, we decided to go ahead and pursue. However, with his needing a med change, we were awaiting an intermediate stay at a psychiatric center, and one could not be found in 5 days of our hospital stay. The social workers tried endlessly to place him but due to his age (either too old or two young) or his deafness or non-verbalness, no one would accept him. This is in all kinds of centers in probably a 200 mile radius from here.

We were floored, completely floored. We also inquired about how we can get funding for him to go right now to the Florida center. There is no funding known for it, though I Have not stopped looking. The center says we have to pay for it with MRDD or Mentor Health Board monies – we check with mental health board and they say MRDD should pay – and MRDD says they don’t have the funds for that at this point – we believe we need his I/O waiver to pay for it, which may come at some distant date – 10-15-20 years from now?

Continue reading

Autism awareness personified —

Watching our children grow up in the world of autism and deafness, it has become harder for me to really be active in the community of autism, as it takes all our energy to just keep our children safe and well in the world.  It is hard to see outside our own lives.  I am grateful,however, that many people in the world, even people who don’t have children or family members with autism, are working so hard to promote awareness and that today instead of being a rare condition it is becoming one of the most discussed and researched conditions.

I am hoping through my life to also work to be an advocate and learned person in the world of autism and deafness, which is the condition that most affects us personally.  That is an area of deficit today – there is little information or services on individuals with autism and deafness.

Here are a few:

I am encouraged that there are way more than when I started these blogs in 2006.  I actually printed the Gallaudet University article (60 pages) and have read through about 30 pages of it.  We also are applying for Chris to go here:  http://www.nda.com/services/autism.php It will be hard to send him all the way to Florida, but it really sounds like they could meet his needs there.
I am also thrilled that I am back in school and headed for this degree:  http://www.kent.edu/ehhs/spa/index.cfm with http://www.kent.edu/ehhs/sped/index.cfm (the autism certification).  I also hope to get fluent in ASL either now at Lakeland (where I am currently attending) or at Kent.  I hope in the end I can be of more help to my boys as well as other individuals.
Thank you to everyone in the world working to make a better life for those touched by autism, as well as autism and deafness.

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