31 for 21: Day 17- Yes. Babies that have Down syndrome will do what other babies do.

Look who’s sittin pretty!

Fave-O-Lit Friday: 31 for 21: Day 16 A Credo for Support

A Credo for Support: People First Version

Authors: Norman Kunc and Emma Van der Klift

Description:

This powerful 5 minute video offers a series of suggestions for people who care about and support someone with a disability. These suggestions are intended to prompt viewers to question the common perceptions of disability, professionalism, and support. Designed for use in presentations, in-services, staff training, and orientation programs, this video can be a provacative catalyst for dialogue on these issues. The video is set to music.

Originally produced in 1995, a revised version was created in 2006 intended to be more respectful to people with disabilities. In this revised version, the credo was not reworded but is read by members of People First of San Luis Obispo, California. The self-advocates are shown on screen as each reads a line of the credo. The original version, narrated by one person with only words shown on-screen, also continues to be available

Contact Info:

Name: Norman Kunc and Emma Van der Klift
Title: Axis Consultation and Training
Address: 340 Machleary Street
Nanaimo, British Columbia V9R 2G9
Canada

http://www.normemma.com/

Here is the revised video version that is read by members of one People First community:

A Credo for SupportGrow

A Credo for Support

Throughout history, people with physical and mental disabilities have been abandoned at birth, banished from society used as court jesters, drowned and burned during the Inquisition, gassed in Nazi Germany, and still continue to be segregated, institutionalized, tortured in the name of behavior management, abused, raped, euthanized, and murdered. Now, for the first time, people with disabilities are taking their rightful place as fully contributing citizens. The danger is that we will respond with remediation and benevolence rather then equity and respect. And so, we offer you a credo for support.

Do not see my disability as a problem. Recognize that my disability is an attribute.

Do not see my disability as a deficit. It is you who see me as deviant and helpless.

Do not try to fix me because I am not broken. Support me. I can make my contribution to the community in my way.

Do not see me as your client. I am your fellow citizen. See me as your neighbor. Remember, none of us can be self-sufficient.

Do not try to modify my behavior. Be still and listen. What you define as inappropriate may be my attempt to communicate with you in the only way I can.

Do not try to change me, you have no right. Help me learn what I want to know.

Do not hide your uncertainty behind “professional” distance. Be a person who listens and does not take my struggle away from me by trying to make it all better.

Do not use theories and strategies on me. Be with me. And when we struggle with each other, let me give that rise to self-reflection.

Do not try to control me. I have a right to my power as a person. What you call non-compliance or manipulation may actually be the only way I can exert control over my life.

Do not teach me to be obedient, submissive, and polite. I need to feel entitled to say no if I am to protect myself.

Do not be charitable to me. The last thing the world needs is another Jerry Lewis. Be my ally against those who exploit me for their own gratification.

Do not try to be my friend. I deserve more than that. Get to know me. We may become friends.

Do not help me even if it does make you feel good. Ask me if I need your help. Let me show you how to better assist me.

Do not admire me. A desire to live a full life does not warrant adoration. Respect me for respect presumes equity.

Do not tell, correct and lead. Listen, support and follow.

Do not work on me. Work with me.

Quail Day- The heart of the matter; 31 for 21 Day 15

Vellamo

Vellamo

So we have been back to our pediatric cardiologist for a follow up. Not such a great visit- no impending open heart surgery but he talked a lot more about it and how great the heart team we would use is. Which of course left me gloomy and worried. I’m wondering about giving up trying to nurse- he said that there was no need but he also said her weight dropped off a bit- and I know the main change in the last few weeks is trying to get her to nurse and it tires her out and she ends up eating less. Although- when I plotted her weight and height it didn’t look to me like it had dropped at all. I work with a pediatrician and I showed her my handy charting work and she thought it looked accurate as well- that being the case her weight has not dropped.

I need to stew over yesterday’s visit some more I don’t want to get all alarmist about it- he said essentially things are the same- but he was just more guarded about her future and described the septum wall hole as bigger then he has in the past and said he was surprised she hasn’t needed surgery already. So I was a bit taken aback. I guess we have probably always been in limboland over this- but since she doesn’t have active symptoms we can easily see; I don’t often think of it and am more focused on how great she is doing. This is just the most time he has spent talking about surgery. Before he always said we were a long way off from worrying about it and my overactive mind heard  the start of him mentally preparing us for surgery. I hope it is just my overactive imagination but I tend to be right about these things which doesn’t help my paranoia.

I just hate, hate, hate the thought that something I might be doing is contributing to a compromise in her health. He said nursing was fine and he would tell me if it wasn’t but he also said there was a drop in weight gain- which is what could lead to surgery. Maybe he knows it is inevitable and thats why he said what he said. He was very kind about it- he outright said that trying to teach a baby to nurse that doesn’t want to is stressful enough and I shouldn’t add to that by thinking guilty thoughts that it is harming her- but I can’t help myself. The nursing is to strengthen her oral-motor muscles- so she will not have as hard a time with solid foods and will have better speech clarity. Both of which are areas that are typical to be delayed in kiddos with Ds. Of course heart surgery is a typical outcome for a child with Ds as well- it’s all just so gray- there isn’t any clear right or wrong right now- which is my fear that in hindsight I’m going to be left wondering if I should have made the other choice. If she has heart surgery I’ll feel guilty that I should have let her have an easier time of drinking her milk from the bottle. If she doesn’t have heart surgery then I’ll wish I had been more tenacious with teaching her to nurse. I can’t know the future now so it just leaves me in bits and pieces over what to do for her. I think we are usually blessed to not have to face the enormity of the consequences of our actions on our children’s futures on a daily basis. It’s just so hard when we do have to face it; well maybe not head on, but from a spot in the mist where the road ahead is less clear.

corner view: love, 31 for 21 Day 14

corner view is hosted by the lovely jane. Below is a list of all the worldly participants. On Wednesdays a theme for the next week is posted and each person posts a picture- or in this weeks case a lovely poem that represents the topic from their corner of the world. It is such a lovely way to broaden your worldview!

There were so very many pictures that I thought of when I think of love. I’ve been fortunate to have captured some lovely memories over the years with my camera. I decided to limit them to the first 12 that come to mind though. In it are some first kisses, some kisses of the future to be, some introductions to new babies, some old friends enjoying each other. Some acts of love captured in the moment- like Lovey’s dedication to his dear little daughters and me as a new mother as he takes the wee morning hours shift to feed our newborn so I can rest. A number of moments of family that is spread far and wide across this dear country meeting the newest member. And my favorite my dear girls with their hand joined as they nurse. When I came home from the hospital after the Quail’s birth, sweet Zuzu had just finished up her first 48 hours of sleeping without Momma and Daddy cuddled to her. Dear Gramma had come to be with her while we were bringing the Quail into this world. And each night Gramma would tuck Zuzu into her bead with stories and then go to rest herself and wake up in the morning with a warm little body pressed snug up against her. Zuzu, being the matter-of-fact little person that she is told Gramma that Momma and Daddy were at Baby Quail’s house. When we came home from the hospital that first night she was overjoyed to see us and her new sister. She took one peek at her in her carseat and the first thing she said to her, and rather unprompted I might add was; “I love you Baby Quail, you’re my sister.” We settled into the next to nurse and it was explained to Zuzu that she would now have to wait to nurse since the baby only drinks milk and she can eat and drink many things. She sat so patiently in front of us with a hang-dog expression in her eyes. After a minute or two of her quiet stare I decided to go ahead and let her try in tandem. She curled up, latched on and immediately took her sister’s hand in her own. So very gentle and one of the most precious moments of bonding I have witnessed. We have been blessed with next to no shows of jealousy between the sisters to date. I credit this small act with a large part of that.

Come and visit these corners of the world!

jane, ladybug-zen, ian, bonnie, esti, sophie, cele, modsquad,caitlin, joyce, ani, kim, natsumi, epe, kaylovesvintage, trinsch, c.t., jeannette, outi, ritva, francesca, state of bliss, jennifer, dana, denise, cabrizette, bohemia girl, isabelle, amber, a girl in the yellow shoes, mister e, janis, kari, jgy, skymring, elizabeth, allison, lise, cate, crescent moon, erin, otli, ida, caroline, lisa, dorte, kimmie, la lune dans le ciel, nicola, malo, vanessa, britta, april, b, kyndale samantha, karen, kristina, goldensunfamily, sophie, janet, mcgillicutty, aimee, sunnymama, jenell, britta, juanita, pamela, inna, daan, myrtille, cris, ibb, jodi, gillian, travelingmama

31 for 21 Day 13 Famous folks

Baby on Boppy

Baby on Boppy

One day I was looking up more information on the Sears family- You know Dr. William Sears- the infamous parenting expert and pediatrician and parent along with his lovely wife Martha; of 8 children. Their 7th child Stephen has Down syndrome. Well I came across a Wikipedia page listing other famous families that have a child with Ds in them. Including Charles Darwin’s family and Charles Du Gaulle. I was looking for that page today and had no luck.

 

 

 I did come across these websites though:

http://www.downrightbeautiful.org/famous-parents.html

http://www.about-down-syndrome.com/famous-people-with-down-syndrome.html

http://childrenrspecial.wordpress.com/famous-people/famous-down-syndrome-people/

http://www.rapideyeproductions.com/factsheet.html

http://www.cdadc.com/ds/high-achieving-people-with-down-syndrome.html

And a  lovely article from Melissa Riggio:

http://kids.nationalgeographic.com/Stories/PeoplePlaces/Downsyndrome

But- sadly- as I said I cannot find the Wikipedia page. I know it was a category that was something along the lines of “famous parents of people with Down syndrome”. Perhaps it vanished?

31 for 21, Day 12 Take a walk around the neighborhood!

Buddies

Buddies

I headed over to Unringing the Bell for a little inspiration for todays 31 for 21 post. I figured I would go read what the other family’s were up to and see if I had anything similar to add. Well I didn’t get very far. The mere fact that 116 other families are participating in this challenge left me grinning ear to ear!

I also will go take a stroll around the blog-o-sphere to get a small glimpse into just what life in a family that is touched by Down syndrome has in store-

Come along with me- walking is always better with a Buddy!

1. Tricia
2. Sonia Brown
3. Mary
4. Kristin
5. Nora
6. Laurie
7. Michelle and Elliot
8. starrlife
9. Michelle Z
10. Cate
11. Maureen
12. Lisa
13. Kimberly
14. My name is Sarah
15. Stephanie @ Ralphcrew
16. RK
17. Braska
18. Maya
19. Snippets/ Michelle Adams
20. Deborah
21. Elizabeth
22. Jennie and Micah
23. Su Su
24. heidi marie
25. Meredith- Cornish Adoption Journey
26. Norris
27. Mindy
28. Heidi
29. Tracy
30. Wendy P
31. Michelle (Big Blueberry Eyes)
32. Jen
33. Emma Sage
34. Opposite Kids
35. Kacey
36. Kelly Z
37. Claudia
38. Traci W
39. Beverly
40. Mary 41. Anne
42. Regina
43. Lisa
44. Stephanie
45. Stevenson Family
46. nichole
47. Laura (Munck’s Quiver)
48. Marcy
49. Megan
50. Julie
51. Cathy
52. Amanda
53. Shelley
54. Christine
55. AZ Chapmen (Of life and times of a teenager with CP and NVLD)
56. One More, More than One
57. Debra R.
58. Rees’s Pieces
59. Kristen
60. Karly
61. Sandi M
62. Pam and Rhett!!!
63. JRS
64. Molly
65. Rachel
66. Ssejors
67. Meghan Dickinson
68. Grew by 2
69. jo
70. sasha
71. Prince Vince
72. Tina
73. Lianna
74. Karyn
75. Jessica (Raising Joey)
76. april
77. Jasmine
78. Tesney
79. Karen
80. cathy 81. Ali from Mexico
82. Art of Possibility
83. Hanzely Clan News
84. Ann
85. Angie
86. Courtney
87. Lori and Colleen
88. Cole
89. Ruby’s Mom
90. Anna W
91. Katie & Logan
92. Alice
93. narretto family
94. Bethany
95. Bethany
96. Chris
97. Kelli
98. rickismom- a teen’s mom
99. Grodansmamma
100. Jennifer (Life of the Bubelas)
101. Kelli
102. Michelle
103. Sari
104. Rosa
105. Liz (Our Version of Normal)
106. Amelie
107. Leslie
108. Beckee
109. Mandy
110. Chris
111. Liz
112. Amy (Mama Mason Mann)
113. Kristin Rose
114. Amy Silverman
115. Malins mamma
116. Michelle
117. Maggie Mae @ Walkonthe Happy Side

31 for 21, Day 11: It’ll be ok.

IMG_9618IMG_9621IMG_9636IMG_9640 Statistically speaking; 90% of all people who receive a prenatal diagnosis of  Down syndrome choose to terminate their pregnancy. While I consider myself pro-choice. I firmly believe that Down syndrome is not a reason for abortion. Some of the worst articles and writings out there talk about how the only people in this day and age that would give birth to a child with Down syndrome are religious masochist. I can promise you I am not.

The reasoning behind this seems to be that a child with Down syndrome will only suffer in life. Bear in mind this view can only be based on the historical context and precedent of placing children with Down syndrome in institutions away from their families, communities and appropriate medical care. This is not what life looks like now. Right now the biggest hurdle a person and family touched by Ds will face in life is overcoming the ignorance and hatred of strangers. I wouldn’t even call this a challenge- a challenge is something every single human being on this planet works with to learn to do any single task. It is a challenge for any new baby to learn to sit, to roll, to walk and  to talk. As parents and teachers we get to know our children and their learning style and we apply that knowledge to help each and every one of our children be as successful as they possibly can be. We champion our children. And I can promise you your child with Down syndrome will be no different in that regard.

Yes there will be doctor appointments and therapies. That is most likely a given. But it is a given opportunity. We are so fortunate that in this day and age that technology and advances in science and medicine can help us all live better lives. There are people who will help you figure out what to do to help your child succeed. How can that possibly be a bad thing?

When our oldest daughter Zuzu was in her first year we had doctor appointment after doctor appointment. We spend the second six months of her life with every other week visits to the pediatrician to follow up on her ear infections and the subsequent follies that follow a dose of antibiotics in a young system. It was a hard year for all of us. But the fact that we were frequent visitors to her caring doctor certainly never gave me pause as to her worth as a human being. Our Zuzu is a spirited child. We are constantly trying to figure out what is the kindest way to explain the world and societies expectations that she not yell and throw her food during a meal out at a restaurant. The best way for her to learn this? By going out to eat and practicing it. The fact that we have to explain things to our 3 year old has never given me pause as to her worth as a human being.

Will the way we have to explain things and teach our Quail be different then how we explain things and teach things to our Zuzu? Yes- most likely. Is it because she has Down syndrome? I don’t know. Maybe, maybe not. Maybe it is because she is a unique human being, with needs that are different then her sisters. Are my needs different then my own sisters? Absolutely. Does that make me less of a human being? Absolutely not.

I read medical records for a living. I read those of children and adults alike. I see that a large population of our world faces challenges in their health and well being. How often is that because these people have Down syndrome? Not very. People all around us have heart, back, psychological, IQ, behavioral, breathing and digestive issues. The majority of the time they do not have Down syndrome. Yet no one questions the value of these individual’s worth in society.

Nowadays a typical person that has Down syndrome is likely to be affected by a group of specific medical issues. But they are just that- medical issues. They can be medically managed.

Thyroid disorder? Control it with diet, exercise and thyroid medication. Does the general population also face this issue? Absolutely.

Vision difficulties? Control it with glasses, vision therapy or laser surgery. Does the general population also face this issue? Absolutely.

Hearing difficulties? Control it with hearing aides, regular check ups and treatment of fluid in the ears and ear infections. Does the general population also face this issue? Absolutely.

Learning difficulties? Control it with a good diet, exposure to a stimulating environment, frequent opportunities for learning and early intervention which is a county enacted; government sponsored program.  Does the general population also face this issue? Absolutely. Let me just say that you would be surprised to find out the actual IQ of most people you interact with on a daily basis.

Heart issues? Regular check ups, medication and treatment from a pediatric cardiologist. Does the general population face this issue? Absolutely.

It is impossible to know prenatally what the future of any child will be. We hope that our children will not struggle in life. We hope that they will be healthy, happy and successful in life. What is the definition of a successful life? Well that varies by person. Some people find meaning in making millions of dollars. Some people find meaning in being famous. Some people find meaning in helping others. Will your child find meaning in one of these? There is no way to know prenatally.

Will your child face challenges in life? Yes, we all do. Are there people out there to help you figure out how to best support your child with or without Down syndrome? Yes, we all will.

Will your child suffer because they may need therapy to achieve their developmental milestones? Well take a look at the pictures above. This is the Quail doing her physical therapy at home. If this looks like suffering to someone- well then I’m sorry for them and the life they lead.

Will your child with Down syndrome achieve their developmental milestones? Yes. Yes they will. Will it be later than the average child? Maybe. Is there a way to know that prenatally? No. No there is not. The books you read give you an average of when a child will achieve a particular milestone. That means some will do it earlier and some will do it later. Will your child with Down syndrome find happiness in their life? Maybe. Will your child without Down syndrome find happiness in their life? Maybe. We certainly hope so for all of our children. Will your child with Down syndrome never live on their own? I don’t know- maybe, maybe not. The world of opportunities open to a person with a disability is changing every day. Will your child without Down syndrome ever live on their own? I don’t know- maybe, maybe not. It is impossible to know this prenatally as well.

If you are bothered that the government may help provide services to ensure the future of your child. Well let me say there are plenty of services that the government provides that  I would prefer they ask me my opinion on how that money is spent as well. Do I think that the government spending money on the future of all children is important? Yes, yes I do and that is one of the main reasons I pay my taxes. Are there people out there that don’t have Down syndrome and still relay on government funding? Well if you drive on public roads, if you use the government courts, if you park on a public street, if you use electricity, if you take a FDA approved medication, if you go or went to public school, if you enjoy a publicly regulated sewage system, if you enjoy the freedom to speak your mind and live your life. Then yes- the government is spending money on you as well.

Will my child that has Down syndrome need government assistance when she grows up in order to live? I don’t know. Am I doing all I can to make her a strong, capable independent person? Yes, yes I am. Is my child that doesn’t have Down syndrome going to be in need of government assistance when she grows up in order to live? I don’t know. Am I doing all I can to make her a strong, capable independent person? Yes, yes I am. Am I going to be in need of government assistance someday myself- either due to retirement or a future injury? I certainly hope not. But its impossible to know. Am I doing all I can to make myself a strong, capable independent person throughout my life? Yes. Yes, I am.

Will your child with Down syndrome know you? Yes. Absolutely yes.

Will your child with Down syndrome learn and grow? Yes. Absolutely yes.

Will there be joy in your life with a child with Down syndrome. Yes. Absolutely yes.

Now if you’ll excuse me- I need to go help my 3 year old who does not have Down syndrome poop in the potty. She is in the process of being potty-trained. In the meantime- my 7.5 month old, who does happen to have Down syndrome is busy feeding herself her morning bottle.

31 for 21, Day 10- My baby is not a Down’s- let’s talk about language

I'm talking to you

I'm talking to you

 

I’m taking a lead from Kaitlyn’s Korner and reblogging her reblog from Patty at To Love Endlessly

The correct name of this diagnosis is Down syndrome. There is no apostrophe (Down). The “s” in syndrome is not capitalized (syndrome).

An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them.

Encourage people to use people-first language. “The person with Down syndrome”, not “the Down syndrome person.” A person with Down syndrome is not “a Downs”.

Words can create barriers. Recognize that a child is “a child with Down syndrome,” or that an adult is “an adult with Down syndrome.” Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children. Adults enjoy activities and companionship with other adults.

It is important to use the correct terminology. A person “has” Down syndrome, rather than “suffers from,” “is a victim of,” “is diseased with” or “afflicted by.”

Each person has his/her own unique strengths, capabilities and talents. Try not to use the clichés that are so common when describing an individual with Down syndrome. To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that “all people with Down syndrome are the same.”

Here are some basic guidelines for using People First Language:

1. Put people first, not their disability* A “person with a disability”, not a “disabled person”* A “child with autism”, not an “autistic child”

2. Use emotionally neutral expressions* A person “with” cerebral palsy, not “afflicted with” cerebral palsy* An individual who had a stroke, not a stroke “victim”* A person “has” Down syndrome, not “suffers from” Down syndrome

3. Emphasize abilities, not limitations* A person “uses a wheelchair”, not “wheelchair-bound”* A child “receives special education services”, not “in special ed”

4. Adopt preferred language* A “cognitive disability” or “intellectual disability” is preferred over “mentally retarded”* “Typically developing” or “typical” is preferred over “normal”* “Accessible” parking space or hotel room is preferred over “handicapped”

Guidelines from the National Down Syndrome Congress

http://www.theupsideofdowns.org/down-syndrome/proper-language-guide

31 for 21: Day 9 Busting up a stereotype

screamin' mad

screamin' mad

 

Babies that have Down syndrome are not passive angels that are alway happy. They are regular babies with a full range of emotions just like any other baby. If you assume my baby who happens to have Down syndrome is filled with joy and wants to love everyone she meets; you will be sorely disappointed as she clearly notes that you are not one of her people if she hasn’t already met you and hung out with you. She will give you a cutting look and turn back to her people.

She knows us and if you take the time, she may get to know you.  You will have to earn her love, trust and respect the same as you have to earn mine.

Now that said; please do take the time to get to know her and let her get to know you.  She is awesome.

31 for 21, Day 8- Let’s help a family figure out insurance re heart surgery

Jenee over at Kaitlyns Korner needs some help, friends. She is looking for another family that is in her same boat in regards to the following- they need to find another family that  lives in Michigan, has Priority Health insurance and has had heart surgery at MOTTS Children’s hospital at the University of Michigan. Due to privacy laws the insurance and hospital can’t give her names of who else has. If you have had this experience or know of a family who has- or can at least help get the word out to try to find another family then please check in with her.