Sunday, June 21, 2009
Chromosome Disorder Outreach Video 4
I follow Colleen's blog... One Day at a Time closely. Isaac is in this new outreach video. His smile just melts my heart!
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Mischievous
Baking Cookies!
Horseback
Mom got to sidewalk today!
3 Year Picture
First Day of Preschool
Had a good day...except the bus!
Going to Open House!
Had a blast meeting my teacher!
Search This Blog
Special Child
Swinging!
At the park loving the swing!
Checking Out the School Playground with Mom and Sisters
having a blast!
Glasses......Cookie Bribery
Sharing a cookie with Oliver
The Aquarium
checking out the turtles-- I love this picture
Playing on the Beach- 2009
lots of sand fun in the OBX
Natalie's School
Assistive Technology-
Apraxia Awareness
Journey with Hope
Natalie Hope- Our Beautiful Baby
Day 2- July 9, 2006... in the hospital waiting to go home
A Walk on the Beach- Georgia
and they said I may never walk- 24 months old
Therapeutic Riding June 2008
Ride On Rio!
Chef Natalie
I love helping mom cook!
My New Glasses!
Little professor!
Working on the Steps
wearing my Theratogs (leg straps) and glasses going down the steps dad built for me.
Ready for Opening Day Dad!
Go Tigers!
She Figured These Out Too!
We were told by her therapists at school to use these braces to help keep the glasses on. The plan: put the braces on,- then put the glasses on- 5 minutes later- take off the braces. They said, she'll forget all about the glasses and would not be able to take the braces off herself. They were wrong-- day 1 she figured out how to get them off- then take off her glasses!
About Us
- Sandy Tanana
- Michigan, United States
- I hope to one day start a foundation (I already have a name for it and a plan in my head) to help parents pay for the expensive therapies and equipment that they need for their children, but can't afford. Early Intervention and the proper equipment is crucial for any child with special needs. Therapies are very expensive even with insurance. All children deserve a chance to reach their maximum potential. We are full time working parents, so we can provide all of the services that our daughter needs and keep the lives of our typical children as normal as possible. I hope to be able to share some of the wisdom that we have gained through our journey. This is also a very therapeutic place for me. I am very honest and open about my feelings. I know at times, people may not like that, but I am. I am able to get our story out and hopefully give others hope, and maybe inspire people to reach out to families of special needs children. I also aspire to get my PhD in Special Education. I have a passion to revamp the birth to three programs to better suit all children and families with special needs.
Followers
Blog Frog
Helpful Books
- ** 1. More than a Mom- Living a Full and Balanced Life When Your Child Has Special Needs- by Amy Baskin and Heather Fawcett http://www.morethanamom.net/
- **2. The Late Talker by Lisa Geng
- **3. The Out-of-Sync Child by Carol Stock Kranowitz, M.A.
- 4. Chicken Soup for the Soul- children with Special Needs
- 5. Married with Special Needs Children by Laura Marshak Ph.D, Fran Pollock Prezant M.Ed.
- 6. Sign, Sing, and Play by Monta Z. Briant
- 7. (Great for children of all ages to teach about differences- sung to country music also)- Don't Laugh At Me by Steve Seskin and Allen Shamblin
- ** Excellent Books
Quotes to Ponder
Helpful Links
- 1. Easter Seals
- 2. Kaufman Center- site of Natalie's OT and ST therapies (West Bloomfield)
- 3. Genetic Information
- 4. Hypotonia
- 5. Special Education- IEP's
- 6 . Therapy Products
- 7. Therapy Products- Free Shipping
- 8. Natalie's Horsebackriding in Clarkston, MI
- 9. Support Website
- 10. Speical Olympics
- 11. Cerebral Palsy Milestones for Toddlers
- 12. Epilepsy
- 13. United Cerebral Palsy
- 14. Special Needs Parent Coach
- 15. Exercises for your child
- 16. Barbara Smith OT- hippotherapy Site
- 17. NIDCD- communication disorders
- 18. Parenting with Love and Logic- Special Needs
- 19. Mental Retardation
Silver Ribbon Campaign
Trike for Special Needs Kids
Little Tykes 3 in 1 Trike
Great Sites for Toys for Speical Needs
Great for All Children!- Be Careful What You Put on it- No Names (just cell # and maybe non- verbal
Natalie's Favorite Sites
Michigan Dept. of Education
Parent to Parent Matching (Support Group)
Good Therapy Products We've Borrowed/ Bought
- Arm splints to keep glasses on
- Talking Photo album
- See Through Play Tunnel
- Weighted Hand Patches- Hand Support
- Compression Shorts- Learning to Crawl
- Chair at Kaufman for Natalie
- Therapy Brushes- Nerve Ending Stimulation
- Pediatric Balance Board
- Pediatric Walker- Gait Trainer
- Benik Brace- Trunk Stability
- whistles
- Scooter Board- Vestibular Issues
- Roddy Horse- Trunk Stability
- Chewlry- Biting
- Flexicup- Drinking/ Swallowing
- Finger Stamps- Fine Motor
- Finger Crayons- Fine Motor
- Button Pull- Oral Motor
- Bite Blocks- Oral Motor
- Shoe Braces
- Z- Vibe- Oral Motor
- Theratogs- turn foot outward/ inward
- Peanut Ball- Core Strength
Awareness Gear
Did You Know?
Kelly's Kidz
Wright's Law- How to Fight For Your Child!
Newsgroups That We Subscribe to
- OurSpecialNeedsChildren@yahoogroups.com
- http://childrensapraxianet@yahoogroups.com
- http://hypotoniahope@yahoogroups.com
What We've Done So Far....
- 2 MRI's
- 4 EEG's
- Accepted the fact that she needs Special Education services
- Advocate for her
- Aimed to keep the family as normal as possible
- Asked for help when needed from family and friends
- Asked other parents for opinions on schools, doctors, and therapists
- balance boards
- Brushing Therapy
- Contacted Early Intervention - at 4 months old
- cried (and still do)
- Dafo's
- EKG- to check for heart muscle weakness due to hypotonia- found a murmur
- Enjoy her
- Epsom Salts baths to get rid of toxins
- eye exams
- Finger Crayons
- Fish Oils
- Fought not to have her special education certification changed
- Found a Developmental Pediatrician
- Found a great Neuro Muscular Doctor
- Found a great Neurologist that will answer our questions via email
- Genetic Testing
- glasses
- Hand Weights
- hip x-rays
- Incline work
- joined newsgroups
- Joint Compression
- Kept good files on all appointments and tests done
- LOVE her
- Made a tough decision to keep working full time- great insurance for Natalie's therapies
- Natalie wore a Benik brace for core stregnth for months
- Occupational Therapy
- Oral Motor Therapy
- Orthopediac Doctor
- Orthopedic Inserts
- Orthopedic Surgeon
- P.E.C.S- picture exchange cards
- Phenobarbitol- seizure medication age (3-12 months old)
- Physical Therapy
- Pushed for testing to be done
- Quit asking why this happened
- Reasearched Preschools
- Researched everything (almost too much)
- Seeked multiple opinions (doctors and therapists)
- Speech Therapy
- started the Ball Rolling on Communicative Devices
- Stayed up all night to research
- Still blaming myself for what happened to Natalie
- Talked to anyone that would listen
- The ARC for therapy items, school support, and an advocate
- Therapeutic Horseback Riding/ Hippotherapy
- Therapeutic Listening
- Theratogs
Playlist
2 comments:
Thank you for posting about Isaac and the new video. I think the video is great way to promote awareness on the many rare chromosome disorders there are out there. I love seeing all the sweet faces!
Colleen- As I follow your blog, you and Isaac give me strength-- thank you. Sandy
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