I think about what it must be like for Chris, not being able to hear or speak. I don’t think about it often, though, because it will make me cry and look at things that seem unfixable. But I know God has a plan and a purpose, though it’s hard to see what it is. Continue reading
over 100 things…
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- Christopher played the organ when he was 2 and seemed to be very gifted musically. He was still talking then.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- We want to have the same scheduling and success at home!!
- 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.
- 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.
- Colleen has always loved to talk and has a wonderful vivid imagination!
- Colleen and her dad often had creative times playing with her animals and dolls and made elaborate story lines about them.
- 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.
- We used to have Colleen in ballet class and gymnastics and she enjoyed that very much.
- Colleen also has done ice skating many times in her brother’s skating class.
- 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.
- Colleen would like a dog and we hope in the future to be able to get a therapy dog that will help the boys.
- Colleen is going to be 13 and is growing up before our eyes into a beautiful young woman.
- 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).
- I knew Ryan would be my last child, unless the Lord has an unexpected miracle now in my 40s!
- Ryan made our family feel complete.
- 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.
- 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.
- Chris laughed and smiled at both his little siblings when they were babies. He especially loved Ryan’s bathtime as an infant.
- 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.
- Ryan’s deafness was diagnosed after several months of non-conclusive hearing tests after dual tubes being put in after ear infections, in 2003.
- 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.
- I will never regret having early intervention for all three of my children.
- 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).
- 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.
- 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.
- Both Roger and I have the entrepreneur spirit and have tried many arenas to make a supportive living for our family.
- 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.
- Roger is a gifted guitarist, poet, and writer. I hope someday he can go back to pursuing these interests.
- Roger was the lead guitarist in our church band for a while – he was great!
- 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.
- I love choir greatly (second soprano!) and I hope to someday return to it. I also play guitar and sing solo at times.
- Roger is a great cook and barbecuer!
- We love to hike at the park and have picnics!
- Roger got his associates degree in 2001 – yay Rog! He worked and went to school at night.
- 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.
- 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!
- Okay, more tidbits on just me, then I’ll close. My favorite kind of candy is chocolate.
- I am addicted to lip gloss.
- I rarely channel flip.
- I love pens, paper, organizers, and am addicted to the stationery section of stores.
- I feel like I work better on housework when I talk on the phone to someone.
- I’m fairly good with money and even better at making beautiful spreadsheets and budgets for it.
- I’m not as good at housework but very good at making streamlined, organized spreadsheets of the chores I need to do.
- I love making web pages.
- I love cashews.
- I often eat crunchy peanut butter with dark chocolate chips mixed in.
- My house is often a mess even though I pick up just about every day (whirlwind tornado 4-year-old!).
- 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.
- I own large supply of books on how to get organized.
- 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.
- 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.
- I usually think I’m right once I’ve made a decision.
- I have a horrible time making a decision.
- I do not drink alcohol at all for various reasons though I did drink in college.
- I tried smoking cigarettes but couldn’t figure out how to inhale.
- I am very glad I never tried pot or any other illegal drug.
- I didn’t think I would get pregnant the first time I tried after 3 years of marriage.
- I did get pregnant the first time!
- I drink icy pop (cola or dr. pepper) often stuck in the freezer for a while but only drink about 12 oz. a day.
- 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!
- I do enjoy drinking flavored waters with Splenda.
- I collected Trixie Belden books as a child and want to pick up some for my daughter to read and me to reread!
- I had the fancy hard back version of Little Women and read it at least 20 times.
- I had the entire set of Little House books as a child and hope to also get this for my daughter.
- I absolutely adore reading, especially Christian historical.
- I had all my children’s names picked out at age 18 and they were Christopher, Jeannine, Kevin, and Danielle.
- I only used the name Christopher and tired of the other names before I had Colleen & Ryan.
- If Chris would have been a girl he’d have been named Danielle, most likely.
- Colleen would have been named Ryan if she was a boy.
- If Ryan would have been a girl, I don’t know what she’d have been named, though I liked Michelle a lot.
- I do not plan to have any more children, though I always wanted four.
- For the first time in my life I would be devastated if I were to get pregnant.
- If I did have another baby, I would know it was in the Lord’s plan, and I would cope best I could.
- I would probably want a girl…
- When I was little everyone was forced to call me Laura or I wouldn’t answer (that was not my name!)
- I got very good grades in school but was embarrassed about it.
- In 9th grade I purposely failed some tests because I thought that would make me popular.
- 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.
- 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.
- I only pursued nursing for one quarter and then switched to secretarial.
- 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).
- I usually made the Dean’s List in college.
- Sometimes I miss working, for one second, but then think how insane I am.
- 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.
- I love being home and playing with my kids.
- I wrote a book in high school about a Cambodian girl.
- I wrote a book in elementary school about orphans.
- 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.
- I wrote about 500 poems but haven’t written any in years.
- My husband wrote me poems that were beautiful when we were dating.
- April of 2004, I was up to 187 lbs. Iâ€™d lost 18 pounds last summer.
- I gained back all of it, and then lost the same approx. weight in 2005. Luckily I’ve only gained back 10 this time.
- I can recite most of the Veggietales Silly Songs tape, and know what key the songs will be in.
- I started playing guitar when I was 10.
- I started singing when I was 6 or 7.
- 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.)
- I sleep with a care bear given me by my husband in 1984. (Friend bear)
- I wish I could take more classes just for fun.
- I love to write.
- 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!!
- 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.”
- I really like that…..
Comments: Hi – hope to post soon – we’re fine. Busy as always! Survived working all weekend last weekend transcribing. Getting my hearing aide eval next week.
Hope to read and post SUNDAY. Tried to post in the diet board but it wouldn’t let me ;P so —- I’ve been been on board since MONDAY. 5 days now. I’ve lost 1 1/2 pounds. It’s been about 7 months since I’d seriously watched and I’d gained 10 pounds back + 4 inches. So my goal is to lose that 10 pounds by the end of June. I’m doing Deal A Meal/Food Mover (when I find it 😉 to count portions. Still allowing myself some dessert in extreme moderation.
Time: Friday, 5/19/2006 6:44:02 PM (#81200)
Comments: I meant, I’m doing my Deal a Meal NOW, (just an older version of the Food Mover, with cards that you move instead of windows you close), until I find the Food Mover, which I find easier to deal with, but it is lost from the move 😉
First I worked end of last week and all weekend, first transcription assignment I’ve accepted in almost a month.
Then I had appointments all week solidly! We are trying to use our insurance while we have it as well as getting all the kids school stuff done for the year.
Monday I went to my ENT/audiologist and found out that I too, in addition to my dad, 2 of my children, and 2 cousins, have neurosensory hearing loss. I’ll be fitted for hearing aids soon to join my children in this adventure. I have a moderate hearing loss but my right ear is much better; thus my good ability to still do the transcription.
Have a good rest of the week – dori
I LOST RYAN’S HEARING AIDS. I can’t find them anywhere. I know I brought them in the house; I remember taking them off of him (he has a clip) and I always put them in this one drawer, and they’re not there! I just looked through the whole house twice and am so aggravated. I don’t know if he took them out and was playing with them yesterday when I was working? I had to work like 1 1/2 hours more after he got home (not a good thing) and I hope he didn’t get into them and destroy them…. though I never once saw him with them. I just don’t know. (He takes them off when he gets home from school).
Ugh, so happy Rog has work now (same place since sept. 00). I’m going to keep my foot in the door with the jobs and do a little bit ($50 a month or so) just in case he gets laid off again. But right now, super. We’re having fun together, too.
Please send “finding” vibes my way for those hearing aides!
someone must have sent up an instant prayer for me as I FOUND THE HEARING AIDES! Ryan had them apparently as they were stuffed down in the couch. Little stinker….
I write my good friend EVERY DAY so here’s the update I gave her. I STILL haven’t packed my linen closet….
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
can the cocoon
safe inside me?
what would this
That really struck me – my 14 year old Chris, still in his cocoon, of autism, and deafness
LJ Interests meme results
- attention deficit:
I believe my whole family suffers from this. Apparently I have it, but it didn’t affect my school work – I was kind of a brain ha ha! But my housework abilities suffer.
- back to school:
I still want to go back to college, but this, again, is on hold. I really want to get either a music therapy degree or an occupational therapy degree.
Chris went through the test fine. I’m so relieved about that.
About the results —
he is severely and/or profoundly deaf – 80-120 dcb. Apparently this is almost totally deaf. He may be helped by cochlear implants. So obviously something genetic here. Both boys are getting blood tests to check on genetic causes, and my daughter needs to be tested too.
and our refrigerator’s broken (for the 3rd time in 3 weeks).
more soon —