Thursday, November 26, 2009

Sunday, November 22, 2009

This is it........

Glitter Words



My 1000th post - wow!!!! I've been trying to think of something special to do - something profound to say - for the last several months as I've been watching my posts count up to this milestone. Unfortunately I don't seem to have an epiphany of anything amazing and special to do to mark this momentous celebration of my verboseness....

I started this blog 4ish years ago as a journal and an information source for people searching for answers to what having a child with Down Syndrome is really like. There are so many families who get the diagnosis of Trisomy 21 from prenatal testing or at birth who have no idea what having a child with down syndrome will really be like. They get that dx and it throws them for a loop and they aren't sure where to turn - but if they're like me - they turned to the internet. And - what a treasure of information the internet is on Trisomy 21 - good information, and not so good information - but information just the same -and a life line for people struggling and grieving with the fact that their baby is - well - different. I wanted to be able to show people who, while silently grieving, were making decisions about their babies, and I wanted to document and chronicle our journey as a family, of our life as Brady's Bunch.

It hasn't all been roses - our journey.... It's been an adventure with ups and downs, days that I've struggled with the things that come with Down Syndrome - but not with Brady himself, if that makes sense. Sometimes I struggle with his diagnosis, but I would never trade him, or the things that he has taught me, or the person he has helped me become, for anything in the world.

Most of our struggles come from outside influences - a society who doesn't understand, who sees Brady as "broken" or "defective", a school district that values children with cognitive disabilities less than typical children - and offers them an education that is substandard and is not willing/unable to fund programs/supports to make meaningful inclusion possible, teachers who have underestimated Brady's abilities and were unwilling to make the modifications and adaptations needed to help him learn and succeed, a medical community that sometimes offers the cop-out of "it's just down syndrome" there's nothing else going on/that we can do - or question my concerns when I voice them.

But - the negative things - the struggles are far surpassed in both quantity and quality by the positive effects of having Brady in our lives. If I had enough time, and brain power, I could probably list 1,000 things that Brady has taught me - but I guess you'll have to settle for a tenth of that ;)

So - to celebrate my 1000th post, and our journey as Brady's Bunch- here are 100 things/ways that Brady has taught us/influenced our lives.....

1. babies with down syndrome are sooooo cute!!!!

2. hypotonia makes for the best snuggles!

3. babies with down syndrome do stay babies a little longer - some people see that as something negative - that was a positive for us - newborns are my favorite - and I got to enjoy that a little bit longer with my cute boy!

4. babies with down syndrome meet the same developmental milestones as typical kids - sometimes in they typical time frame, and sometimes not!

5. signing is an awesome way to communicate with babies and kids!

6. I can do more than I think I can.

7. I can adjust to changes in my life - and sometimes having your life all planned out is overrated :)

8. I can do hard things - like advocate for my child, and take on nay-sayers :)

9. running water IS soothing and interesting the way it moves through your fingers and sprays everything when you plug the faucet with your hand.

10. the smiles of people with down syndrome are brighter than the sun, and having one turned on you, makes your day.

11. joy in the simple things.

12. that there IS time to stop and watch the ants crawl, notice the bugs in the grass, and lay on the trampoline and watch the clouds go by.

13. I love you is the sweetest sentence ever spoken.

14. you just might be sad when the words you've been working on for months pronounce correctly finally do get pronounced right, and you miss the "wrong" way....

15. that there is no such thing as "normal".

16. that most little kids are more tolerant and patient than you give them credit for - and that their prejudices come more from their parents than from themselves directly.

17. that DreamWorks makes some pretty dang good cartoons.

18. the Wiggles have much better dancers than the kids on Barney.

19. what the acronyms IFSP, IEP, T&A, ASD, VSD, PDA, SID, BIP, FAPE, OT, SLP, PT, APE and LEA (to name a few) mean.....

20. to do things that are wayyy out of my comfort zone.

21. patience.

22. that my kids are awesome people.

23. to be more comfortable and accepting of all people with different disabilities.

24. that maybe I shouldn't cheer quite so loudly at soccer games :)

25. that sometimes it's nice for your kids to stay small and wear the same clothes two years in a row :)

26. that you can persevere through things that you don't like and are hard (hospital stays and tests) with a smile.

27. there is something new and exciting to learn and notice every single day - and most of those things are pretty simple and we tend to overlook them.

28. that Woody and Buzz are some pretty dang cool toys!

29. toddlers have an amazing knack for learning how to work the tv and dvd player.

30. that some TV shows you said you'd NEVER let your kids watch may have some redeeming value - so much so that you know own all 4 seasons and a music CD of the most annoying yellow cartoon sponge ever created.

31. that there is more going on in your children's heads then you give them credit for.

32. that some therapists are better than others, and once you find the right one to work with your child - they are worth whatever it costs.

33. to celebrate the little things as much as the big ones, because the little ones come more often :) We party over some of the most basic things here at our house :)

34. tattle-taling from a fairly non-verbal child is cause for celebration!

35. some things take a LONG time to learn - patience really is a virtue......

36. out of the blue kisses and hugs are the BEST!!!!

37. organization is important.

38. internet friends are awesome!

39. support comes from all different places, and often when you least expect it, but need it the most.

40. people are generally very accepting and kind.

41. Grandma and Grandpa can bring a smile to Brady's face like no one else (well - except maybe Spongebob :)

42. relatives usually mean well, even when they say dumb things.

43. antibiotics are a gift from God.

44. Lakeshore learning makes FABULOUS learning materials - even if they are spendy.

45. there are so many amazing people who work in the field of people with disabilities - they have so much knowledge and they really care about the people they serve.

46. the squeaky wheel saying - well - it really is true.....

47. the school district people don't like parents who know the law and who study Wrightslaw - they show up at the "trouble makers" IEPs much more often than the "non-trouble makers".

48. Leapfrog makes some really cool electronic toys, and they really are good at teaching things!

49. repetition, repetition, repetition is the key - 100's and 100's of repetitions.

50. baths are more fun when you soak everything in the entire bathroom.

51. playdoh isn't always fun - sometimes it's work - luckily we're back to the "it's fun" again phase.

52. that candy is gross, but glue, playdoh, lotion and hand sanitizer might actually be tasty?

53. it's more fun to take up an entire King sized bed sleeping horizontally, than the regular way.

54. shelves were made to be empty of all books and anything on top of them.

55. tidy rooms are overrated, and the cleanliness of a room can be remedied in 30 seconds flat.

56. crackers from un-opened packages taste better than the ones from yesterdays half-finished package.

57. microwave popcorn is only good HOT, and not palatable after 30 minutes.

58. spaghettios, ramen, mac and cheese, and chicken nuggets really are a staple of a well rounded meal.

59. eating with utensils is more a guideline than an actual rule.

60. Oxyclean and Biz really do work well on stains.

61. those dry erase markers that OT's and teachers are so fond of - don't come out of clothes - even with Oxyclean and Biz.

62. there IS a difference in chicken nuggets between fast food places - the ones you think would be the healthiest are the least preferred, and the ones that are the ickiest - well - they are apparently the best - or it could just be they have better toys at McDonald's.....

63. Disneyland IS the happiest place on earth - and one can apparently ride the rides time after time after time and never get sick of them :)

64. Land Before Time is timeless.....

65. Little Critter rocks!

66. music is the key to unlocking short term memory problems ;) Teach something with a song, even a terrible mommy-made-up song, and it's remembered forever :)

67. appointments with specialists are like appointments with the President - you never want be late or miss them....

68. family is the most important thing!

69. Stride rite makes cute wide shoes ;)

70. things that you used to think were important, really aren't.....

71. the word "retarded" used to mean stupid, dumb, ridiculous - hurts :(

72. always expect the unexpected...

73. so much can be communicated with out real words.

74. I have great kids!

75. that tests can all be negative for something, and you can still have it.

76. never put light colored carpet in a master bedroom.

77. perfection can be found in the least expected places :)

78. true joy

79. selflessness

80. unconditional love

81. responsibility

82. tolerance

83. understanding

84. cameras with fast shutter speeds are worth extra money :)

85. being included means more than just being in the same room as typical kids.

86. anything worth doing takes effort.

87. times goes too fast!

88. resilience

89. to view the world with the eyes of a child

90. finger painting and getting dirty and doing kid things is fun....

91. childhood is short - make the most of each and every day!

92. reality changes every single day - living in Brady's world requires flexibility.

93. be careful what you pray for :)

94. Heavenly Father knows Brady personally and loves him as much as I do.

95. bubbles are motivating.

96. human touch is important.

97. it's hard to be a violet in a world of daisies, especially when the daisies want you to be like them.

98. there unexpected gifts that come from having a child with a disability, and your child is the greatest gift of all.

99. don't worry about things you can't change.

100. God doesn't make mistakes....

101. our family is complete and enriched and blessed because Brady is a part of it......

What has knowing Brady - being part of his bunch - even just virtually taught you?

Tuesday, November 17, 2009

It's November......time for gratitudes....

So I thought maybe I should post 100 things I'm grateful for - to make up for the 100 posts I've probably missed writing for the last 6 months of this craziness I call life.....

I'm grateful.....

1. for my parents, for all their patience in raising me, and for being such great examples.

2. for my grandparents - they were amazing people - so very very talented, each in their own way. I think of my gentle grandpa every time I'm around animals. I think of my fiery grandma when I look at her china in my cabinet (or on my table as my daughter has a cereal buffet at her fake preference ;) and think of her writing in the town paper and what a great writer and money manager she was with only an 8th grade education. I think of my super talented Nana, every year when I pull out my crocheted nativity that she made me when I was just a little girl, and I remember her living with us and being such an amazing person. I miss them all.

3. for my siblings :) I don't have very many, but I love them dearly, and they have provided me with many nieces and nephews who I also love dearly :)

4. for my hubby - he is amazing and wonderful. I'm grateful he convinced me he was the right guy for me. I love him more than I can ever express.

5. for Big K :) My firstborn, independent, amazing girl. Her motivation and hardwork at all she does inspires me :) Her sparkly blue eyes and contagious smile and laughter - I miss them :) Love you K!

6. for C :) My started-out-shy-but-is-really-super-outgoing-and-crazy girl :) Her sweetness and compassion are a great example to me. She is super. Love you C!

7. for J :) My super smart little tiny little guy :) I know you'll grow someday - but remember - good things come in small packages ;) I love your even temper and easy going-ness - your calming influence is so appreciated on those crazy days - which are often in our house :) Love you J!

8. for H :) Mr. Mischievous, from day one :) You make me laugh with your antics and smile with your enthusiasm for anything and everything. You want to do it all :) I am grateful for all your help with Brady at school :) I know he loves to see you when you come and get him :) Love you H!

9. for Little K :) My lone little girl buddy! Soon the big girls will both be gone and it will be you and I amongst all the boys :) I'm glad you will be around to keep me in nail polish, cute shoes, and shopping mode :) You are my great buddy - I love all your notes and pictures you make me and your sweet hugs and snuggles. You are indeed my baby girl!!! Love you Little K!!!

10. for Brady :) For all the things he teaches me every day, and the wonderful people he has brought into my life. I wouldn't be the person I am today, if not for his influence. I love his smiles and hugs and impromptu kisses (even if they still are a little slimey ;) There is nothin' better than a snuggle from my baby. Love you Brady!!!

11. for a wonderful home and neighborhood, with good people to surround my children with support. It really does take a village....

12. for my hubby's job and that he is willing to keep at it to support us and allow me to stay home with the kids.

13. for food storage :)

14. for Costco - it helps with the ol' budget and food storage ;)

15. for nice smelling laundry detergent - it makes the job much more fulfilling :)

16. for a dishwasher - now if only I could get it to load itself???

17. for paper plates - although we've cut down on our use of them (they went wayyy up in price -what is up with that? I think maybe Heavenly Father wanted my kids to know that most people actually eat on re-usable dishes?) they are so very handy for those nights when the momma has had it and can't do one more thing.....

18. for crock pots - they make cooking easy :)

19. for fireplaces on cold, snowy days.....

20. for i-tunes - love those playlists for everything from working out, to cleaning house, to Sunday music.....

21. for good soccer coaches. They make all the difference!!!!

22. for friends who let us swim in their pool and practice soccer in their garage :) And - who love and support Brady and provided him with one of his bestest friends :)

23. for v-tech - their entertaining electronic toys are good teachers :)

24. for Walmart - really - how would we do it without Wally World???

25. for computers and the internet. Hand-me down lap tops are the best (thanks Dad) and what would I do without this ol' desk top conveniently situated in the kitchen amongst all the action?

26. for fuzzy socks to keep my winter cold feet warm.

27. for sweet soft sheets from my mommy - they feel like heaven :)

28. for chocolate. It's straight from heaven :)

29. for Bath and Bodyworks antibacterial soaps - they smell so good and entice my children to wash their hands ;)

30. for the orthodontist and the magic he works on my kid's teeth and that they are so good (so far - to wear their retainers and keep those beautifully aligned smiles we spent years working on :)

31. for good schools, that offer good programs and teachers and support people who want my children to succeed as much as I do :)

32. for Brady's aides - he loves them and they are sweet and patient with him.

33. for the parents of the great kids in Brady's classes - especially from last year and this year. They are great kids - I know he is happier and better off from their influence, and I know they are better off from his :)

34. for Brady's awesome teacher - she is the best. I give thanks for her every single day! Love you Mrs. A!!!

35. for my kids good friends. I love that they have great standards and goals.

36. for the gospel in my life. I don't know what I would do without it.

37. for my savior, Jesus Christ, and his atoning sacrifice for me and the knowledge I have that if I live my life righteously I will see Him again someday.

38. for having a temple close. I don't go nearly enough, but I will - it's a New Years Resolution :)

39. for my camera - I need to capture those memories for those alzheimers days that I am sure will come.

40. that I got to go to France this last summer with Big K and see so many amazing things.

41. for my little laminator. It gets a workout every week with supplemental things I make for Brady, but it keeps on giving :) I'm glad that Walmart sells them for less than 30 bucks - so when it finally does give up the ghost, I will be able to afford a new one ;)

42. for Christmas music - love it!!!

43. for trampolines and the smile they bring to my kids faces - who even though they are big - still love to play "uncle scar" with their dad.

44. for my sandbox. I love sand!!!

45. for soft carpet :)

46. for Spongebob - cause it entertains my whole family...... scary isn't it???

47. for Disneyland - cause - well - I just LOVE it there :) It's magical.......

48. for the sun - I love warm sunny days - they make me happy :)

49. for rain - jumping in puddles is - well - awesome!!!!

50. for snow - the cold fluffy big white flake kind - and the wet kind that's good for snowmen and snowballs.

51. for fallen leaves to jump in and crunch!!!!

52. for the lake and the cabin - so many good memories and so much fun!

53. for playing cards with family and friends.

54. for fun puzzles to figure out with the kids :)

55. that I get to listen to my kids play the piano - well - mostly :)

56. that several of my kids have beautiful voices - I love to hear them sing (a couple are like me - tone deaf though - I still like to hear them sing though :)

57. for Christmas cards - I love to see pictures of old friends and catch up with their families :)

58. for my health.

59. for health insurance. We are changing companies this year to save money - hopefully the new coverage will be as good as the old.....

60. for my internet friends - some of you are like family - I'm glad I know you!

61. for warm bubble baths and romance novels :)

62. for silly tv shows that make me laugh/cry/give me an escape :)

63. for christmas pedicure gift certificates :)

64. for hair dye - it's true - blondes have more fun ;)

65. for cute sweaters - you can never have too many....

66. for treadmills - they make handy clothes holders and always serve as a reminder that I should be doing more in the exercise department.

67. for Dove promise chocolates - I love the little sayings :)

68. for silly computer games like Webkinz - they give me a way to connect with my little kids and great nieces and nephew :)

69. for FB - even though it's a time waster, it helps to keep track of my teenagers and their adventures ;)

70. for Stephens Hot Cocoa - milk, cocoa on a cold morning - what could be better?

71. for the color yellow - it makes me so happy :)

72. for bright blue water and white sandy beaches. Just thinking about them, even if I never get there - is relaxing :)

73. for airplanes - what a great invention :)

74. that my parents took us on a cruise for their 50th anniversary - we saw such cool things and made such fun memories. Family vacations are the best!!!

75. for restaurants. I love that I can go out on special occasions and someone makes the food, brings it to me, and cleans it all up :)

76. for Mr. Clean. It just smells good :)

77. for Christmas ornaments. I love to decorate our tree and get out all the ornaments - my parents give my kids ornaments each year and they are always excited to get them out and put them on the tree and reminisce about different christmases and we always try and get an ornament from each trip we take, so we talk about those too. I have put together a "memory" tree that has ornaments of each of my kids from each year of their life til the present - I love to look at their sweet faces and see how they've grown.

78. for post-its :) They help with my forgetfulness :)

79. for my big washer and dryer that help me get my laundry done ;) Now if only there was something that folded it and put it away. We have tried that invention called "children" and it doesn't work that well ;)

80. for SigningTime :) and Rachel Coleman and all she has taught Brady and the help she has given us to help him communicate better :)

81. for Google images - how would I do all the visuals and supplements I do for Brady without Google :)

82. for online shopping - I don't even have to get out of my pj's :)

83. for good deals - I love a bargain :)

84. for Target - their pharmacy is so much easier to work with than Walmarts :)

85. for simple and cheap Christmas requests :) I love those $10 gifts :)

86. for rubbermaid totes :)

87. for orange kittens who snuggle.

88. for remote controls - especially volume controls.....

89. for yummy ward recipe books :)

90. for phone calls from friends - just because, and just to chat.....

92. for mail :)

93. for good YW/YM's leaders - like soccer coaches and teachers - but on an even more important level - they make all the difference......

94. for running water and indoor plumbing.

95. for enough food to eat.

96. for clean water to drink, and enough of it for all our needs.

97. for access to books and magazines and educational materials - our city finally got a library :)

98. for children who want to go to college, go on missions, get married in the temple, and make something of themselves.

99. for the many necessities and luxuries I enjoy.

100. for my life.........

Sunday, November 01, 2009

Sunday Grains of Gratitude.......

Grains of Gratitude


Wow - it's November again - NOVEMBER!!! Seriously? I can't believe it. I dare scientists to show we aren't in some sort of time warp - cause we've got to be!!! I swear the world is turning faster ;)
Sorry I've been so delinquent in my grains - it's not cause I'm not grateful, but I feel so strapped for time and pulled in so many directions, I haven't had a chance to formulate my thoughts and put them down in a post! I have so much to be grateful for!!!!



This week I'm grateful.....

We could carve pumpkins :)


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(do you like H's gap in his teeth? The orthodontist is expanding his palate and this is a temporary gap - we're calling him David Letterman :)
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I could finish pictures for the Soccer Yearbook and take a few of C and her friends in the process :)

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That C works hard in school and received an All Region Academic award again this year :)

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That Big K came home on Thursday night to celebrate her 19th birthday a few days early! It was fun to get together!!!!

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That Little K's soccer season ended on a positve note - a WIN!!!! She progressed and developed her skills this season and had such a postive experience with her team and coach. You could really see a change in their skills and level of play from their first tournament games in July til the end of the season. She gained a lot of confidence and competitiveness and she was thrilled that she had the opportunity to be a captain for her team.

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that the big sisters could come and cheer on their little sister for her last game!
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that it was Halloween!!!! I love Halloween - although it was a bit rushed and hectic and crazy this year due to the soccer yearbook. I'm thinking that although I will miss HS soccer, my falls for a few years just might not be soooo busy, and maybe that is a good thing! The kid's loved their costumes and had a great time dressing up, going to their parties at school, the ward party and trick or treating! Brady LOVED trick or treating this year. He went to more houses than he has ever gone to before and could have gone even longer - but mom and dad were tired LOLOL He ran up to each and every door and knocked and said "TRICK OR TREAT!!!!" and then "thank you" once he got his treat :) He loved all the decorations, even the scary ones that he was nervous of at first - he wanted to check everything out. He really loved all of it!!!!
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that the little kid's Halloween parades were at different times - so I could attend both!!!!!
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I'm just so grateful for everything! Life has it's ups and downs, and I feel so crazy and behind on everything all the time. I'm sure I'm failing each and everyone of my children at any given time in a week, I know I'm failing in my housekeeping and laundry duties, I'm a terribly forgetful friend, and delinquent blogger and poster on my internet boards, but, in spite of all my apparent failures, I feel like I am so blessed, in so many ways, each and every single day. Life is GOOD!!!!!

What are YOU grateful for today????