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!

 

2011-10-09 13.43.21

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.

2011-10-09 13.43.04

Appts.—

Ryan had some new appts. this week. These are copied from a post I did about them – the first one is yesterday:

“Don’t know if I ever mentioned but we had a long-awaited genetics appointment today. At first, I was going to be tested for connexion 26 (an inherited hearing disorder – my dad had hearing impairment, I do, my boys do, and so does my cousin and possibly her brother). I never got the test because our insurance expired [our kids all still have insurance through Healthy Start].

Anyway, when I called about the test, to try and get it in before the insurance expired in May, they asked me more about our history, and after hearing about the boys and their autism spectrum, etc., they decided to instead test Ryan first. So we brought him in today.

He had a hard time being patient but did do some nice artwork on the board with markers!! We were able to give the dr. & assistant all our history, etc. He was supposed to have a preliminary blood test today but then he got so upset and was screaming in his stroller, so we put that part off for Monday. We were there about 1 1/2 to 2 hours already by that point.

There are more complicated tests, now, I guess, for ASD’s and other disorders, where they test different chromosomes and stuff. There may even be some syndromes that involve autism and deafness. So Tuesday we’re going back and Ryan is going to have blood test (s?) and we’ll see what they find out. [poor baby!] This will also tell us probably if my hearing loss is genetic.

They seem very interested in finding out what caused all these things to happen in our children. They also seem very knowledgeable and professional.

Eventually Chris will be tested too – he’ll have to be put to sleep for it.

Everyone knows us there too — we’re famous at the Cleveland City hospital systems…..

But it was a tiring day. It’s also emotional to think of everything that’s happened. It’s all for a reason, but it’s hard to go through it all–explaining how Chris lost his words twice, how we didn’t know he was deaf until he was 14, how Ryan’s developed mild symptoms (which breaks my heart over again) and even Colleen’s struggles with concentration.

Then we were going over all of Chris’s digestive problems he had as a young boy, and his weight gains and losses, and all the ups and downs of his health, and his skin infections etc (a lot of this is detailed early on in my blog).

I’ll keep you up to date as we get results…”

Then today:

“Today was Ryan’s appt. with behavioral center. He was assessed and we were told that they WOULD find someone to come help us at home with him some, but that they couldn’t promise they could find someone that really specializes with spectrum disorder. This lady (nurse/counselor) also suggested that perhaps we pursue something like risperdol for him. Chris was on risperdol for years – it actually did wonders for him – but I just wasn’t ready to accept that Ryan actually needed anything like that. But, maybe he does… we do have TONS of behavior problems with him, and —-“

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3 with autism diagnosis —

Ryan was diagnosed today with ADHD and also suspected PDD (pervasive developmental disorder, the umbrella term of autism that is most mild). He went ahead and gave the PDD diagnosis [which he suspected but didn’t know how much of the behaviors could be from his hearing loss] to enable him to have the most schooling and therapy. He should be able to go to all day school next year now for kindergarten in an autism class. I’m relieved about that in one way because I know he really needs the structure. On the other hand it breaks our hearts to have three children on the autism spectrum though, again, Ryan’s diagnosis could change as he gets older and more verbal and maybe it’ll change to Asperger’s like his sister who is just about typical with some vague shadow syndromes.

His ADHD seems rather severe and although he is only 4 he’s been prescribed medication – FocalinXR. I need to do some research on it. I’m afraid to give it so young- Colleen didn’t start on Ritalin and then Concerta until she was about 9, but she was never as hyperactive. He actually does very dangerous things – he has run into the street before and just yesterday he plugged in a waffle iron in the living room while I wasn’t looking for a minute and just left it heating. He didn’t ask me about it, just went, got it and plugged it in. He has become extremely hard to handle and even though he’s only 50 pounds it’s exhausting. 50 pounds is still 50 pounds. and on a day when 200-pound Chris is pulling me around – watch out.

They have always prescribed new meds for Chris that again I’m afraid to try. we think we’re going to try and hospitalize him to enable the med change – his last med change he had a psychotic reaction in 2004 (I think that’s the right word?) similar to tardive diskenysia (sp?) and it was horrible. I have to make an ASAP appt. for him Monday.

Thanks for prayers for us!

Prayers also appreciated for our financial situation – we’re doing okay but we got so behind both when Rog was laid off and I was on the one working, and then when he was working but I took a break due to the severe situation of the kids, that we are pretty behind. I’m about to put all our back bills on credit cards just to start with a clean slate because I don’t want any shutoffs. But you hate to do that too…

In the “small potatoes” category I really want to get my house cleaned up WELL by Tuesday afternoon for my weekly assignment wed. with RT. I worked a lot this last month with two unexpected large assignments (YAY!) from individuals (direct pay) and it was very worth it!! But I had never even caught up from Christmas [still have a Christmas tree up in the basement family room] and just need some time now to breathe and try and clean all the rooms well. I’m tired of tripping over things! To keep our sanity we just need to get our surroundings organized and I’d appreciate prayer that we could do that and keep it that way with everyone’s help in the home.

I also have temporarily (I hope only temporarily) lost my autism/deafness family picture blog due to moving servers (the new server so far has been unable to access my old servers files) and we’ve been unable to load the database even though it looks on paper simple as pie. This is 3 years of work (including old journals from another web site) and I had a lot of friends comments on there and some people who had asked for help with autism/deafness whose contacts will be lost if this blog is lost. I had just made it onto google and was getting some comments [though small and far between[ and now they’re getting a blank page. And i”m not sure whether to leave it blank and as is for the techs to work on or to make a new blank blog – not sure how to proceed. I know it’s a small thing but was so important to me – prayers on that appreciated!

And I have a bad headache today – had aches and pains yesterday half the day – and 3 people in my family have had a bad cold or flu and I’m surely hoping I’m not catching it.

I’m glad you are all here and that I still have this journal 🙂

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over 100 things

over 100 things…

  1. We have always felt the Lord has a plan for our lives. Part of that plan apparently is that we have children with some special needs. Our goal is to seek Him on His will through this and how to help ourselves and help others.
  2. In my childhood I read a book about a girl that was autistic and rocked all the time. I wish I could remember the name of it – I’ve searched but don’t have a clue. I went to school in the 70’s and 80’s.
  3. When I was pregnant with my son Christopher in 1990 I was super careful and never had any caffeine, even. I did briefly take some allergy/asthma medication, but went off it soon after I was pregnant. It was doctor-approved. I wish I could remember the name of the medication.
  4. I was so nauseous with morning sickness with Chris that I lost 10 pounds in the first trimester. But I gained back 40 pounds then before delivery.
  5. I was only thinking of Down’s Syndrome as something to worry about as a birth defect. No other disability came to my mind. Because I was 24, I tried not to worry about Down’s very much.
  6. I had no prenatal testing in any of my pregnancies – I just felt I’d take things as they came and didn’t want to risk miscarriages and wouldn’t have considered an abortion.
  7. I always wanted four children and feel so blessed to have the three I have – they are so sweet, smart, original, and unique. I took the same direction with my other two pregnancies as my first, except I did drink coca cola with the second two — maybe 1-2 cans every few days.
  8. I’m sure we would have had four children if we’d have had one between Colleen and Ryan – perhaps in 1999. But we didn’t feel prepared – I’m sure the Lord had a plan and as He knows the future He guided us to space Colleen and Ryan as we did, as it wasn’t until 2005 that we began to know about the deafness disability.
  9. Christopher played the organ when he was 2 and seemed to be very gifted musically. He was still talking then.
  10. Christopher lost his speech the first time at 2 3/4 and we blamed it on an event at a babysitter’s where there were no witnesses but the girl said a neighbor boy hit him on the head. He showed no damage per the doctor, but the next day quit talking and didn’t talk for 6 months.
  11. Chris regained his speech about 3 1/2-4 years old but was still diagnosed with mild-moderate autism/PDD at age 4 1/4 in January 2004.
  12. Chris held his speech until he was approximately 6 and then it disappeared again. We believe now that this is when he started going completely deaf.
  13. Chris often through the years has hit his ears hard when he is angry. He once caused an injury to his right ear that needed surgery.
  14. Chris used to speak in many words/some phrases and sang Old McDonald and a song called My Buddy. I know it’s STILL IN THERE.
  15. Chris is now in an autism class where the teachers/aids/curriculum is totally AWESOME and he is progressing very well on tasks, duties, following schedule charts, filing, color sorting, and related tasks.
  16. We want to have the same scheduling and success at home!!
  17. Chris was diagnosed as totally deaf in June of 2005, right after his brother was diagnosed with moderate deafness. He has been evaluated for cochlear implant but it is felt his hearing aides are helpful enough at this time.
  18. His hearing aides would be even MORE helpful if we would WEAR them. Sigh – the stage we’ve been in the last 3 months is that he won’t wear them.
  19. Colleen has always loved to talk and has a wonderful vivid imagination!
  20. Colleen and her dad often had creative times playing with her animals and dolls and made elaborate story lines about them.
  21. Colleen is a gifted artist, and as she’s changed her topics through the years she’s now very talented at creating mouse-created pictures on the computer of guinea pigs and anime images.
  22. We used to have Colleen in ballet class and gymnastics and she enjoyed that very much.
  23. Colleen also has done ice skating many times in her brother’s skating class.
  24. Animals have been long Colleen’s favorite and she has enjoyed guinea pigs, fish, and frogs at her grandma’s, and we had two hamsters in our home, one of whom our special SPICE lived for over a year.
  25. Colleen would like a dog and we hope in the future to be able to get a therapy dog that will help the boys.
  26. Colleen is going to be 13 and is growing up before our eyes into a beautiful young woman.
  27. Ryan was born on my birthday, and was the same length as me, two oz. more, and was born either 3 minutes early or later than me (can’t remember at the moment).
  28. I knew Ryan would be my last child, unless the Lord has an unexpected miracle now in my 40s!
  29. Ryan made our family feel complete.
  30. While Chris woke the usual “every two hours,” and Colleen slept all night but was up all day without napping usually, Ryan had an interesting tactic of being up at night for like 4-5 hours at times straight and then sleeping in the day for 3-4 hours. YAWN.
  31. While I was recuperating after Ryan’s birth, Christopher stayed with his grandma “Mama” Roger’s mom, and I appreciated the rest so much. She had also taken Chris for a while when Colleen was born.
  32. Chris laughed and smiled at both his little siblings when they were babies. He especially loved Ryan’s bathtime as an infant.
  33. I think part of the purpose of Ryan’s deafness, which we discovered when he was 3, was that we would then eventually find out that Chris was deaf. I am not sure we’d EVER have known Chris was deaf if it weren’t for Ryan.
  34. Ryan’s deafness was diagnosed after several months of non-conclusive hearing tests after dual tubes being put in after ear infections, in 2003.
  35. Ryan has not been diagnosed with autism, but has been in speech therapy since early 2003 and also has been in special ed preschool since Winter of 2005. He is being followed by a neurologist.
  36. I will never regret having early intervention for all three of my children.
  37. Colleen has also been watched by early intervention and team leaders, but she has done very well, having learned to cope with ADHD and some shadow syndromes (which I may have as well).
  38. One of my purposes in this journal is to build a resource page in regard to early intervention and other helps for families with special needs.
  39. My husband Roger is a wonderful wonderful person and dad. He is hard working, caring, and never stops trying to make life better for us.
  40. Both Roger and I have the entrepreneur spirit and have tried many arenas to make a supportive living for our family.
  41. Traditional employment has been hard for me to continue through the recent years with the needs of my children but I am grateful for Roger continuing to work to support our needs. God provides.
  42. Roger is a gifted guitarist, poet, and writer. I hope someday he can go back to pursuing these interests.
  43. Roger was the lead guitarist in our church band for a while – he was great!
  44. We no longer attend church due to our boys being hard to handle at times at church. I know the Lord has the timing in His hands for returning to a church.
  45. I love choir greatly (second soprano!) and I hope to someday return to it. I also play guitar and sing solo at times.
  46. Roger is a great cook and barbecuer!
  47. We love to hike at the park and have picnics!

  48. Roger got his associates degree in 2001 – yay Rog! He worked and went to school at night.
  49. Our home was a gift from God, made for us – a steal due to being on the market for a year and being kind of run down, we got it WAY below appraisal value. It needs a lot of work, but it’s ours and is enough room for all. With the basement family room included in the total I estimate the square feet to be about 2500 or so, not including the garage. Our old house was just 920 square feet with no basement or garage.
  50. Our family on both sides worked together to build a beautiful fence in the back yard for safety of the children. It’s so lovely out there!
  51. Okay, more tidbits on just me, then I’ll close. My favorite kind of candy is chocolate.
  52. I am addicted to lip gloss.
  53. I rarely channel flip.
  54. I love pens, paper, organizers, and am addicted to the stationery section of stores.
  55. I feel like I work better on housework when I talk on the phone to someone.
  56. I’m fairly good with money and even better at making beautiful spreadsheets and budgets for it.
  57. I’m not as good at housework but very good at making streamlined, organized spreadsheets of the chores I need to do.
  58. I love making web pages.
  59. I love cashews.
  60. I often eat crunchy peanut butter with dark chocolate chips mixed in.
  61. My house is often a mess even though I pick up just about every day (whirlwind tornado 4-year-old!).
  62. We didn’t used to have a garage or basement and a lot of our stuff is still stored at in-laws or my mom’s. We also haven’t finished cleaning out the attic or shed at our old house that is now on the market.
  63. I own large supply of books on how to get organized.
  64. I’m scared that I won’t be able to handle going to college with 3 kids all with special needs. Originally I was going to go back in 2005 (when I first drafted this list on another journal) and now I’ve postponed that until 2009.

  65. My first degree was Associate of Applied Business, Legal Secretarial. Over the years I’ve considered adding Paralegal, Court Reporting, Medical Transcriptionist, Occupational Therapist, Occupational Therapy Assistant, and Music Therapist. I have now centered again on Court Reporting. That’s what I plan to begin study of in the Fall of 2009 when Ryan starts 1st grade. We’ll see.
  66. I usually think I’m right once I’ve made a decision.
  67. I have a horrible time making a decision.
  68. I do not drink alcohol at all for various reasons though I did drink in college.
  69. I tried smoking cigarettes but couldn’t figure out how to inhale.
  70. I am very glad I never tried pot or any other illegal drug.
  71. I didn’t think I would get pregnant the first time I tried after 3 years of marriage.
  72. I did get pregnant the first time!
  73. I drink icy pop (cola or dr. pepper) often stuck in the freezer for a while but only drink about 12 oz. a day.
  74. I used to hate diet pop EXCEPT for diet rite fruit flavors. I have now learned to like diet Dr. Pepper and Coke Zero. I LOVE COKE C2!
  75. I do enjoy drinking flavored waters with Splenda.
  76. I collected Trixie Belden books as a child and want to pick up some for my daughter to read and me to reread!
  77. I had the fancy hard back version of Little Women and read it at least 20 times.
  78. I had the entire set of Little House books as a child and hope to also get this for my daughter.
  79. I absolutely adore reading, especially Christian historical.
  80. I had all my children’s names picked out at age 18 and they were Christopher, Jeannine, Kevin, and Danielle.
  81. I only used the name Christopher and tired of the other names before I had Colleen & Ryan.
  82. If Chris would have been a girl he’d have been named Danielle, most likely.
  83. Colleen would have been named Ryan if she was a boy.
  84. If Ryan would have been a girl, I don’t know what she’d have been named, though I liked Michelle a lot.
  85. I do not plan to have any more children, though I always wanted four.
  86. For the first time in my life I would be devastated if I were to get pregnant.
  87. If I did have another baby, I would know it was in the Lord’s plan, and I would cope best I could.
  88. I would probably want a girl…
  89. When I was little everyone was forced to call me Laura or I wouldn’t answer (that was not my name!)
  90. I got very good grades in school but was embarrassed about it.
  91. In 9th grade I purposely failed some tests because I thought that would make me popular.
  92. By 12th grade I had to squeeze tons of classes in and just about killed myself to get straight A’s and get all my credits in for nursing school.
  93. I did get the straight A’s, and most everyone still liked me, in 12th grade, but I did gain 30 pounds and got migraines and eye twitches from all the stress that year.
  94. I only pursued nursing for one quarter and then switched to secretarial.
  95. When I was almost done with secretarial I almost switched to graphic arts, but didn’t (took one quarter of classes, loved them, but then got married and didn’t go to school anymore after my degree).
  96. I usually made the Dean’s List in college.
  97. Sometimes I miss working, for one second, but then think how insane I am.
  98. I usually thank God I’m home so I can do things like move furniture and improve my house without having to do it on weekends.
  99. I love being home and playing with my kids.
  100. I wrote a book in high school about a Cambodian girl.
  101. I wrote a book in elementary school about orphans.
  102. I also wrote a book in early high school about an overweight girl named Karen. It disappeared. It was the best book I ever wrote.
  103. I wrote about 500 poems but haven’t written any in years.
  104. My husband wrote me poems that were beautiful when we were dating.
  105. April of 2004, I was up to 187 lbs. I’d lost 18 pounds last summer.
  106. I gained back all of it, and then lost the same approx. weight in 2005. Luckily I’ve only gained back 10 this time.
  107. I can recite most of the Veggietales Silly Songs tape, and know what key the songs will be in.
  108. I started playing guitar when I was 10.
  109. I started singing when I was 6 or 7.
  110. I sang my first solo at 11 in front of the class (Let me Be There by Olivia Newton John – it was supposed to be a punishment for having not done my book report.)
  111. I sleep with a care bear given me by my husband in 1984. (Friend bear)
  112. I wish I could take more classes just for fun.
  113. I love to write.
  114. I hardly ever wear makeup. But I just recently renewed my Avon business and have now bought new makeup, and Colleen is now wearing a little makeup, and even my mom is interested in some now. Yay – makeover party coming up!!
  115. I went back to typing at home from Jan. 06 until end of August. Now that Ryan is just in preschool and not daycare (the daycare didn’t work out), I’m back to just “being home.”
  116. I really like that…..
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Ryan the rebel

User: dori

Comments: Ryan’s been kicked out of day care. I’m kinda devastated about it. He can try this other day care at the multi-handicapped school that the owner also runs – she is recommending it and will waive half the fee (since that center is not ELI (Early Learning Initiative) it is not free), but it’s just the principal of the thing – my son is not able to fit into a typical classroom. It’s just the whole future outlook – special classes, again, what about kindergarten, what about elementary school – are we in for it again, MRDD, autism class, what is going to happen here – I just am grieving, I guess. I cried all the way home from picking him up – I just feel I’ve lost something. Why can’t I have had just one child that is totally typical?

But, he is going to get this case study therapy in our home starting last month. That is a blessing. And he he has his special needs preschool he’s been in 1 1/2 years – that starts next week.

Just needed to share – more later. d —- I know I have posts to answer and posts to read as well, but right now I’m burying my grief in a Taco Bell Chalupa meal.

——————————————————————————–
Time: Tuesday, 8/29/2006 11:40:50 AM (#83634)
User: dori

Comments: You know what else gets me about this – I really walked into this with my eyes wide open. I planned to have Ryan. I knew Chris was autistic. I knew Colleen had special needs. I didn’t get the genetic testing because I knew autism wasn’t able to be found through that. I was told it was a 5% chance by our doctors and the internet that we’d have another autistic child. I kept saying there’s a 95% chance he’ll be okay. Maybe those odds were too great to chance. I don’t know. He’s not officially diagnosed yet with autism, but the neuro is looking at it as I told you, PDD. 5% chance — I just wonder if that is really correct.

——————————————————————————–

PDD

working now, but …

went to the neuro, and he thinks Ryan may have PDD. Even with knowing it could happen, I still feel like I got kicked in the stomach.

I know it’s not a death sentence, but….

ugh. I really thought he was doing well and I don’t think he DOESN’T think Ryan is doing well, but just that by 4 1/2 we should be hearing some talking in sentences, etc. I guess I just was hoping the hearing loss was the total cause of the speech delay, and that there was no autism spectrum at all.

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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 schoiol 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.

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Ryan autism?

On Ryan he has what’s called “a flat moderate sensorineural hearing loss bilaterally.” I got his report today and shared with some of the professionals that need it. I need to fax to more people tomorrow. In addition to following upon the hearing loss the final instruction was “continue with psychological/neurologic workup and monitoring for early identification of possible autism.” That kind of gave me the chills. I don’t know if they think he has autism or if it’s just family history — ugh.

dori

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