breaking back in –

So out of this habit it’s ridiculous.  So guess I’ll just start with a small post.  I never finished the Christmas newsletter picture section – but will just start over with that next Christmas season!

2017-05-11 18.19.17 I’m still working many many hours for our sweet Chris, and we have discovered new parks to walk in, which I try and eventually introduce to the rest of the family eventually.  This one is the Perry Bluffs and is so beautiful!  The endeavor for an easier way for Christopher to communicate continues, and we try to get more and better ideas all the time.  When we get a day all together as a family we treasure it.  Funny how when something normal like that is discontinued for a time it is so treasured when it happens!

My three month semester break was ending May 31, and I knew I was not going to make that deadline.  So I wrote and asked for another month, not thinking I’d get it, but they granted it until June 30!  So I won’t have to return to my courses until July 1.  Hopefully by then things will be more stable for us with my work schedule and everything else.  I have one more semester of lesson plans, then another semester to write a large research paper.

The BAES degree is more described here BAES Degree– I have decided to get it and believe I will be satisfied with it.  I will have a solid background in both special education and regular education and the ability to make lesson plans, and also I have the year or so of speech pathology and related prerequisites from Kent.  when I do finish and get a job at some point I may seek something managerial in perhaps even the special needs/disabilities arena for adults, or something similar.  I am most familiar with that!  We’ll see what happens.  If everything goes right I should graduate by June of 18 or a little before.  I will also have the opportunity if I wish to to reenroll later and get my teaching degree by completing student teaching and observation.

things seem to have not changed much in 6 years…

In 2010 we tried to get Chris into a medical placement to help adjust his meds, to no avail.  I posted about it http://www.criscollrj.com/2010/05/23/the-brick-wall/ .  After that in 2011 we did manage to get a waiver and group home placement (in 2012), and I’m so grateful.  I also can work for Chris there which is a blessing, as I can still spend time with him and see how he’s doing.  But we never were afforded at that time a medical adjustment placement, to see if we have the best mix of medicines possible for him.  Soon he is seeing a sleep expert, and I hope we get some answers there.  His sleep and behaviors are all over the place.

I will add that prior to that, in 2004, we did receive a med adjustment, with the urging of his psychiatrist.  He was just 13 then and had a 10-11 day stay.  He had good results after that that lasted two years.  But as an adult he did not get a med adjustment placement.

However, posting this for a friend of mine (below) who is having similar trouble placing her son, but he is only 9!!  You would think it would be easier to get help for a child than an adult!  Sharing to bring awareness and hopefully more ideas for help for her, and changes to the system….

Hello,
I have a bit of a long story that people need to know about. I live in Duncan, OK. I need someone to listen and bring light to this devastating situation. My family is being failed by the Oklahoma Health Care Authority and lack of services available for children with Autism in this state. I hope that by getting the word out, some change will come and my son will be given the help he desperately needs. Some background:

My son is 8 years old. He has severe Autism and is nonverbal. He is globally developmentally delayed. He is also very aggressive. Sometimes his triggers are apparent and sometimes he just snaps. He is nearly 5 feet tall and weighs 90+ pounds. He has been aggressive since he was 2 years old. He has been getting more and more destructive the last 6 months or so. On July 14th, my fiance and I took him to Shadow Mountain in Tulsa in hopes that he would be admitted to their inpatient program because his aggressive tendencies were becoming increasingly worse. After driving all the way to Tulsa, we were told that even though they could see that he needs help, they couldn’t help him because he was “too delayed” and with him being nonverbal, he wouldn’t be able to participate in therapy. We were heartbroken but used to being told that there was no help. Services in Oklahoma are TERRIBLE for Autism, especially severe Autism.


On July 16th, my fiancé’s mother was sitting with our children when my son completely lost it. He attacked his Nana and his baby sister. They were both left with bleeding wounds from bites all over their bodies. He had also bitten a portion of his 3 year old sister’s ear completely off. Police and EMS were called. Both of my kids along with their Nana were taken to the hospital. DHS became involved. We were told that night that our kids had to be separated. They were not allowed to be under the same roof. By the time we got to the hospital, DHS had already had my daughter released to go home with her Nana. They made sure that she was gone before we could get there. Duncan Regional refused to keep my son because “he wasn’t their responsibility.” DHS made it very clear that my daughter couldn’t be in the same house as my son. The worker told my kids’ Nana that if she found out that we had been allowed to see our daughter and our son was present, she’d have our little girl taken away.
Continue reading

About hearing aids…

I just recently got a second hearing aid, after having one left hearing aid since 2006 and wearing it haphazardly.  My hearing loss is less severe – mostly in my left ear, but some in my right.  Ryan’s is second least severe, with his having more loss in each ear than I.  He has refused to wear his hearing aids since first grade, and his school through audiological evaluation at our local deafness school said that his trying to wear hearing aids at that point was more detrimental, as he was tantrumming and not able to focus on his work because he was so uncomfortably stimulated, than just going to school without them.  He has also actually been passing his school hearing screenings which is surprising.

Christopher is most severely affected, with his being almost totally deaf, and he will wear his hearing aids.  He has had one broken now for over a year and we have been struggling with finding a competent hearing aid provider; we found one that we thought was good and then found out that they had twice made his hearing aid mold wrong, making it to uncomfortable for him to wear.  We are now taking him to another provider next week and hope we have better luck.  Of all three of us, Chris will most benefit from his hearing aids.  He also seems to really enjoy wearing them!  I think because his hearing loss is so severe, he is so delighted about hearing anything that he doesn’t really get bothered by the sensory annoyances of them.  Although he has thrown them out of his ears after 5-6 hours before and we have to then find them in whatever room he was in!  So he has to be closely watched while wearing them…

When wearing my left hearing aid off and on for six years, I did experience some better hearing.  However there are drawbacks.  Every background sound is also louder.  I thought perhaps when I got the right ear hearing aid (which I did a few weeks ago) that I would start to hear things better like music playing in a crowded courthouse, for example.  However, as I sat with Rog at Jefferson Co. PA courthouse the other day, every sound in the courthouse was louder even as the music was louder so I could still not hear it any better.  Roger could still distinguish the songs before I could.  Positively, though, I could hear Roger talking better!  And that is important!  And hearing high-pitched birds in the morning, and crickets at night, is also a plus!

About wearing the hearing aids themselves, and thinking of how Ryan is so sensorily over-stimulated with them, after I put them in I feel, for quite a while, like I am all plugged up.  I eventually forgot about that feeling but occasionally it comes back, especially when I’m trying to eat with them in.  I have the full sensation more in the left ear, which has the inside the ear only type of hearing aid, than the right, which has the type of hearing aid that is around the ear with just a tiny tube leading to inside the ear.  I have actually found this right ear hearing aid to be more comfortable and less obvious to see in my ear when I look in the mirror.  The left inside the ear aid also seems to often feel more blocked than the right, but that could be because of the wax buildup my audiologist told me I am experiencing.  Once I visit the ENT and get that cleaned I’ll have to see if I then feel any difference between the ears.  I also quite frequently have a sense of itching after wearing them for several hours.  This has not happened in my right ear yet but I have only had that hearing aid a few weeks.

If we could find a way to write a social story for Ryan to be able to overcome these feelings I’m sure he has as he wears his hearing aids, maybe we can help him to learn to wear them again.  The benefits of his wearing hearing aids would greatly help him!  In school he mostly has one-on-one help, but that may not continue for his whole life  If he can experience group learning in a more complete way by being able to hear better that would be wonderful.

Chris of course will greatly benefit after he gets his correctly fitted hearing aids!  from what I remember the hearing aids help him to hear some, but not great.  I believe they said they get him to almost a 20 dB level, which they explained should be someone speaking to him in a rather louder voice.  I am hopeful as Chris wears his heading aids longer at school that he will pick up more words again (he talked when he was a toddler and young child) and remember how to pronounce them.  He could also enjoy music again that he used to listen to.  He also used to play the organ beautifully – it would be great if he could create music again!

 

 

Transfers and Changes!

2013-06-04 16.40.07

summer13

 

After a very busy, enjoyable summer, we are headed into a fall of changes yet excitement!

First, Chris had a very nice summer camp, along with Ryan, part of the time, where the boys got to swim, go to the mall, the movies, play at the park, and just generally get a lot of activity and movement in the sun, and rain!  Both boys enjoy it a lot and we hope they get to attend next year!  Then Chris went back to his workshop and is really accelerating his progress now after their acquiring an autism interventionist (which is what I’m striving to be, eventually!) that is working wonders with him.  I am also putting more programs on the IPad including Autismate Lite and a Social Story program that we hope will be helpful to him.  He also has been playing on a spelling matching game with me that he enjoys a lot!

Ryan also greatly enjoyed that summer camp, and went to another as well, which was from his school and was an autism camp at a local school.  That was more academic, and we were so pleased that he was actually promoted to a higher level class when he was there.  He then decided to test that teacher with some behaviors but then calmed down and did his work the rest of the time he was there.  He then had another week at the activities camp, and is now half done with his first week of NO camp.  This has been hard on him and we are just trying to keep him busy and happy.  Today is scheduled with going out to the store and later going for his before school physical.  Then tomorrow I work and Grandma watches him, then the weekend is full of time with his brother and then only one more week!  AND the 20th he has 2 hours at his school for orientation.  Before I know it, Ryan will be in 6th grade – August 26!  New school, new teacher, but most likely mostly the same classmates.

Colleen is preparing for her 2nd year of college and most likely will be working at the same time.  This will be a busy new year for her, and she and Scott continue to plan their future and have fun together.  He is working a lot and they try their best to schedule time together around their schedules.  She continues her love all pets and our telling her NO MORE PETS continues.

As always Rog and I are scheduling our quarterly business trips together and have some much needed alone time as we drive miles around the area to these SE Ohio and Western PA counties.  We most likely are next going on October, with the blazing fall leaves.  It is cool to see the seasons change as we do these trips.

Other than that, I’m still working for my senior ladies – two years now! And we have Chris every weekend and have fun with him and the family. Rog and I are battling our own health issues and trying to get healthier. I lost 13 pounds this year doing MFP and walking – think he has lost some weight too, but not sure how much. I’m looking forward now to fall walking and plan to sign up for hopefully two Y classes and start lifting weights a little. I think that will start my weight loss back up. I actually have lost a total of 25 since 2010 and think I do look better. Double chin is gone!

My driver’s license pic in 2010: license

 

Me now. About 25 pounds down…wgu pic

50 to go!

After waiting since March when I signed up for Western Governor’s to see any progress on my entrance (such as my schedule or what classes I personally need to take) I finally got my orientation page and my schedule page, along with all the courses I need to take, on my main portal today!  They had told me before the magic date would be the 15th of August.  So I get to start my orientation activities, which probably will take me a week or so, along with all my classes to investigate.  This is my cup of tea so I will be overly excited about it for a while… ha ha.

Time to put in a “more” tag and then those of you interested can read all about what classes I’ll be taking! Continue reading

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

More than we can bear? God bears it with us.

Woke up early this morning and was reading an older journal – and found these older posts from November 1994 and January 1995. 

 

November 19, 1994

Tomorrow is Christopher’s birthday.  4 years old!  He’s got a double ear infection but is now getting better.  He’s been sleeping in the daytime and stays up until 12 or 1 a.m. or gets up at 6:30!  I have laryngitis and can’t speak at all!  Hopefully we’ll feel better by Thanksgiving – in five days.  That’s when we’re celebrating Chris’s birthday.

Dr. X wants to have Chris evaluated for autism.  Hopefully it will be ruled out.  He’s really a sweet little boy.  We’re praying for him daily.  I know God can perform a miracle. 

November 20, 1994

It really hurts sometimes when we worry that something if really wrong, that our son can’t speak.  Also that he’s often seeming not to understand us, although when it’s something he really wants to do he understands perfectly (bath).  I’m worried we’re focusing on things that may just be nervous habits – grimacing, playing with his fingers (itzy bitsy spider?), looking at bowls and pop bottles. 

He snuggles, smiles, figures things out (like loading dishwasher), being affectionate to baby Colleen.  We do have the promise that God will not give us more than we can bear.1  It seems we’ve had enough trials this past 18 months to last a lifetime.  But there have been blessings among the trials.

February 6, 1995

I’m so happy being home with my children.  These years will go too fast.  Chris is 4 1/4, almost.  He’s stretched out so tall and now seems to be getting a little chubby to make up for it.  his sandy brown hair forms bangs to his light eyebrows, and in straight thickness just reaches his collar.  his chocolate brown eyes are framed with long eyelashes.  He snuggles with us a lot.  Especially while I’m nursing Colleen, Chris climbs up on my lap, on the other side of Colleen, and cuddles up to my shoulder.  At these times I thank the Lord for this time.

Christopher is mildly autistic.  He was tested January 24, and the doctor confirmed our suspicions.  Continue reading

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!)

 

Photo260

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Syllabi and phones —

(http://www.pcworld.com/article/173033/evolution_of_the_cell_phone.html

First I must confess I did have to look up if the plural of syllabus was syllabi – and certainly it is. I wonder where I came about that certain bit of information in my head – I’m certainly not sure – but slightly pleased to know that was right. LOL.

Since 1999 I have had a cell phone – a bit late on that front, but there it is. At first I shared with my mom a cell phone plan where I had a phone similar to the one in the photo. A little bigger perhaps, it was still an amazing thing to us! We progressed to having our own plan by 2004, where at first Roger had Alltel and I had T-Mobile – our workplaces and the connectivity thereto was of upmost importance, and Roger even had to have something of a direct connect right after with Nextel. I also toyed with Sprint before we both ended up getting Verizon in approximately 2006, and even with a brief period with AT&T we are now back with Verizon, as for us now they have the best connectivity of the bunch.

As everyone knows, cell phones are everywhere, and everyone seems addicted to them. They are precious possessions, connections with the world, comfort for parents that children can instantly check in, and entertainment for some, and internet connectivity for the lucky! Yet they are accident causers, confusion creating (remember the first time you saw someone talking on a Bluetooth?) and sometimes patience prodding (person in line on line not paying attention – with embarrassment I admit I was that person in line the day after Christmas, talking with my daughter about some urgent question she had about a ride to an activity, where I didn’t hear the clerk say, “Please move your cart, ma’am, the stockboy needs to get through!”

After being in college now for a year, I am now in my first semester of taking three classes on college grounds. I have taken two other college classes on campus, one my first session (Spring 2010) and one in the Fall of 2010. The other 3 classes were online. I don’t recall what those syllabi said about cell phone use. What struck me this semester, is all three of the documents pretty much forbid even looking at the cell phone. I liked the humor in one of the paragraphs:

“Turn off and put away all electronic devices. This includes cell phones, pagers, Palm Pilots,
Blackberries, MP3 players, tape recorders, cameras, laptops, electronic notebooks, and all other
devices already in circulation or yet to be invented. For those who must be reachable, leave the
telephone number of Campus Police (440-525-7241) and your class schedule. Campus police
will be happy to dispatch an officer to your classroom. The person who needs to reach you will
be able to call Campus Police even if they lose the phone number. Lakeland is listed in the
phone book, and our police have access to your schedule.”

She does have a point. I actually am going to follow her directions and if anyone has an emergency they can call the campus police. Hopefully that policy won’t have be used, but it’s comforting to know it’s there! [ad#Google Adsense]

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