autism, autism Ryan, children, colleen, college, deafness, interests, writing

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 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…..
autism Ryan

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.

 

autism, life

The beginning of the beginning

In 1993 our world completely changed. Our first child was born in 1990 and everything was really pretty wonderful. There is a link here that partially describes those years, and also partially describes his early schooling. But we were content, with the usual new fairly young working parents’ problems – we wanted to buy a house, we wanted to get our bills paid off, and set up a nice retirement. Our goals for Chris and our future children were to be well adjusted, happy, healthy, and generous working individuals with creativity, goals, and a love of Christ.

This entry and a few following from my hand-written journal from 1994 shows were our lives deviated from this path:

10-20-94. Chris will be 4 in a month. Colleen will be 5 mos. in 9 days. Chris is doing good at school. He says 47 words. But none at school. He carries his bookbag into school which he wouldn’t do last year. He’s doing better with pitching, tantrums. He waves his hands a lot. But I had some nervous habits when I was little. I rubbed my fingers on my mouth. I love how he snuggles with me with a book, or a shiny bowl. He likes the reflections, and the banging (no-no!). He’s really good on the organ. He draws circles and lines and drew a “C.” And he played “Here’s the Church” finger game today.

Colleen rolled over on or right before her 4 mo. birthday. She rolled from back to front. Now she does it all the time but can’t get back over and gets mad! She’s napping now. She fell asleep on her tummy for the first time. She’s breastfeeding well – no food yet. More and more she’s feeding for just 4x a day. She smiles real wide and giggles and shrieks. She blows raspberries. She likes her walker now for a while. Is entranced with the “Happy Days” radio, weeble, star rattle.

We’re still looking for other employment. Praise God for another miracle – since the last time I wrote and said that Roger quit his night job, right after that he looked in the paper and saw the XX was hiring. He got his old job back at XX! And today I got a lead form Laura that Jim was leaving the office and may need a part-time transcriptionist. I spoke with him and he’s going to let me know. I hope so!

Continue reading “The beginning of the beginning”

autism Ryan

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.

(2020, don’t know if I posted here, don’t think I did, but we had genetic testing done before having Ryan, even though he was kind of a surprise, and were told there was a very low chance of us having an autistic child again, that it shouldn’t even be a worry for us.  We also had our pediatrician tell us that Ryan wasn’t autistic.  So to hear that he was was even more devastating and shocking.  He’s wonderful as all three are, of course, but it still was/is hard to accept.

 

autism

Welcome!

I’ve invited several of you to view our new blog, and thank you for visiting. We have a purpose here to share our story, and network with others, give some help, and perhaps receive some helpful information ourselves. I will try and write every week or so, and give the story of Christopher, Ryan, and Colleen, and hope that everyone enjoys reading and sharing. Please comment and I’ll try and comment back. I hope this is an enjoyable place for both family and friends, as well as a helpful site for the community. I hope to build an extensive page of links to help others just beginning on the road to special needs, or in the middle, or anywhere on their journeys.

Special prayers and thoughts to you all — blessings, dori

(2020, still my goal!!!  I have had several years of interruptions of meeting this goal, but am still on the way to trying!!!  I don’t regret having the other livejournal pages posted in here, as messy as they are, as they show more about our family than planned posts may have — though now I do need to do more posting as I hardly make any new posts.  I hope once I have this edited and back “online” and publicized that I can start adding new posts again, and make a useful resource for others on the pages accompanying this blog.)

autism, health, organizing, transcription

conference

Comments: Good morning! So far I feel wonderful this morning! I had what I think was a mild migraine last night (no aura or anything) and it responded to Exedrin Migraine. I slept like 10 until 7 a.m. and got a shower. Everyone is still sleeping.

The web site of the conference information is http://www.ehhs.kent.edu/offices/PDO/conferences/index.html.

But I see that hardly any has been transferred yet of the 14 breakout sessions that they had. 3, I think. I plan to read over those three as those were ones I did not attend. We attended the keynote speech by Sean Barron and got the book he and Temple Grandin wrote. We got to speak to him and his girlfriend Barbara and had them sign the book. That was awesome! He ate at Quiznos with her – we saw them in the cafeteria – I wanted to take a picture but restrained myself 😉

Continue reading “conference”

autism, transcription

fences, and anniversaries ;)

http://s22.photobucket.com/albums/b326/criscollrj/moved%20in/?sc=3

My daycare assistance meeting is Tuesday. They tentatively approved me even though at first the lady scared me saying “oh, we don’t cover people who work at HOME.” Then I explained, you don’t understand – I have special needs children who RIP my headphones off my head and don’t permit me to work – I need to have some part-time child care set up in order to work. And I lost two jobs due to having to call in all the time with them being sick – I have to work at home for the flexibility of working around my children’s therapy and any sick time. Then she checked with her supervisor and called back and said her supervisor approved it. I still have to be approved financially though.

Today is our anniversary.

We’re going to an autism seminar ALL day Friday. I’m really looking forward to getting away without the kids for a while. They start camp Monday, also, a NICE 5-WEEK BREAK!

 

autism, chris, deafness, writing

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

 

autism, chris, relocation

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

 

autism Ryan, chris, Christmas, Ryan, sleep

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.