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

Meet Challula- The Family Cat

Challula

Challula
Challula

 

Lovey’s brother is in between homes right now and when he is in his home he is rarely home. So sweet little Challula- affectionately known by all as Chula is coming to live in the Blue Ridge Mountains with us! Chula came to him by way of his Auntie’s farm. We are excited to have a chance to bond with she; who has essentially become the family cat. She will be making her way to us on this Friday. Zuzu will officially be named her person. Zu is beside herself with excitement. We had a lovely Kitty- named Sasha who we affectionately called Kitty until Zuzu was about 4 months old. Sadly he passed away from kidney failure. During one of the rare snowstorms we get in our part of the country. We’ve been a bit too grieved to find a new pet until recently. We briefly had a sweet little kitten take up residence in our garage earlier this summer. But sure enough, the day after I took him to the veterinarian for a well check and round of vaccinations he disappeared. I’m fairly certain I know who has him. Rumor has it he has taken up residence with one of the animal-loving staff at our local bakery. By the time we found this out though he had been gone a month and we felt it wouldn’t be right to ask for him back. Zuzu knows he went to live with “his family” and is quite content talking about it in those terms. When she heard Chula would be coming to live with her though her first comment was, “Yay! I will call her Solomon!” Which is what we had named the other kitten. When I explained that this was a different kitty and one that already had an identity she smiled and said, “Yes- then Solomon can come back and live with us too!”. Poor dearie- she is quite matter-of-fact about the whole cat conundrum and hopefully Chula will stay with us a good long while and become her BFF.

Welcome Chula!

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?

Zuzu Day- Out of the mouth of babes…..

Zuzu

Zuzu

You can’t take back something you said earlier, but you can say you are sorry; you can try to do better and you can try not to laugh where the small ones can hear you. Zuzu is, ahem; a verbal child. She likes to talk. Just ask my mother- she gets it from me. I would estimate that she talks from sun up to sun down; but honestly one of the first conversations of each every day is about the fact that it is still dark outside and who in and out of house is awake and who is still asleep. That should tell you something about which wee hours of the morning the conversations begin in our house. You really don’t know what you sound like until you have heard yourself coming out of the mouth of babes. You can wonder if “the things they say” are something your child heard at the market, or at school or on television. But really, I know it’s me. Well, Lovey too sometimes, but yeah; probably mostly me; actually.  Probably and actually being 2 of the first words we realized we must say all of the time without noticing as they became peppered into her vocabulary at about 30 months.

Talking and listening are the area we struggle most with in relation to Zuzu. The joy of her being so verbal is getting a fairly clear picture of how she thinks. The hardship of her being so verbal is getting a little too clear picture of how we talk. She is; in all fairness, 3 years old. The brain of a 3-year-old isn’t well developed in terms of insight and judgment. This is what makes 3 year olds so fun- and also so raw. Often when I’m frustrated I have a hard time remembering to keep it to myself; in terms of facial expression, tone and volume. We all tend to talk a lot in our house. When Zuzu senses trouble is headed her way, she is quick to head it off with a redirection of the issue. The other day I was chained to the pump. Zuzu starts popping her head in the room and chatting me up. At one point I was fairly certain I smelled a warning flare and heard a barking spider or two. I asked Zuzu what she is to do when she has to go poo-poo. She quickly parroted, “I listen to my body Momma. I go poo-poo in the potty”. Good- so far. Then a few minutes later I smell and hear a oncore. Just as I raise my voice to get Zuzu’s attention I catch the clear grunt on her face. I call out; still fairly calmly, but perhaps a bit more sharply, “What did we just talk about Zu?”. Her response- ” Welllllll Momma, you have to be nice to people when they are trying to go poo-poo.” This conversation continues in vain until I can get Lovey’s attention to go attend to someone’s bummy- in terms of wiping that is.

This has become a standard phrase in our house.  Sometimes it is embellished by her proselytizing to me along the lines of, “Momma, you have to be nice to be a good Christian, Momma.” But often it is just a reminder that I have to be nice when a person is …..(insert action here such as putting shoes on, changing dresses, eating their spaghettios). It is still charming. It’s nice to know there is an emphasis on the importance of being nice to one another.  And Lord knows I need the reminder as much as the next Momma does.  And frankly she is right on the money when she lets me know, “No one likes it when you are frustrated Momma.” as well as the accuracy of her findings that, “You make people sad when you are frustrated Momma.” All this from a newly minted 3 year old. I can only imagine what we’re in for as their powers of reason advance and as the small ones equal and maybe one day outnumber us older, slower, grumpier ones. Usually when she lets me know about my need to hone in my haughtiness, I take it in stride and smile, because she is right. No one likes it, least of all me. She doesn’t always win the match point though.  This weekend as she was being sent to her room for time out for the third time in the hour, I could hear her bemoaning, “NO! Not again!”; as she stomped off with her pigtails swinging out behind her.

When Zuzu was about 15 months old she was eating her snack sitting in her little booster-space-saver chair in the kitchen. Her snack accidently got knocked to the ground. She looks over the tray, says “Oh, shit” and then goes back to eating what is left of her snack. Fast forward to this past weekend. Once again we are at the kitchen table. She is actually eating a meal with us. Mealtime is challenging in our home. What the pre-schooler likes one day is likely to end up pushed to the side the next. Recently Zuzu has decided that chicken is indeed tasty and worthy of her devotion. She looks to Lovey and asks for more, he points to his plate in explanation of there being no more. She turns to me with the same request. I inform her that, indeed we are out of chicken, but if she likes it we can add it to the grocery list again for next week. Her tiny person response cuts me to the quick as she stares at her plate and exclaims “Dammit”.  When she hears no acknowledgment from the grown-ups; she looks around and repeats with a little more emphasis. “DAMMIT!”  After she leaves the table, Lovey looks over and asks me where I think she got that from. Ummmm…let’s hope not Sesame Street. Yeahhhhh, probably me.

And no, she did not get sent to Time Out for that one. I’m not much of a fan of hypocrisy. And, well no one likes it when I’m unfair either.

Momma Monday- Momma’s Momma

Momma's Girls May 2008

Momma's Girls May 2008

Just thinking about my family of girls. Sadly; I live far away from my family of origin. We are all scattered across these lovely states. I’m grateful for air travel that at least makes visiting a little more feasible. This is my mom, my Zuzu and my two sisters- the girls’ Auntie Ebbie and Auntie Shell. I’m the baby of the family. I can’t wait now that the Quail is here to get a chance to go back and redo this portrait with all of my girls.

Growing up I spent a lot of time at my mother’s knee. My memories are peppered with scents and sounds. Playing and reading and cuddling up to watch The Muppet Show, Sesame Street or a christmas special. Dancing in the dining room to records on the stereo. Mom brushing my hair, rubbing my feet, baking cookies, watching me swim, holding my hand, telling me about my family, reading stories or just getting ready for the day.

I appreciate Mom’s character and determination over the years. Being a Momma now myself sends my appreciation to a whole new level. Life is never easy, life just is. It is  what you make of it. That’s what I’ve learned. I look at my girls now and I hope I am able to instill a sentimental memory or two into their psyche. I hope they think of me with the same deep loving thoughts and feelings as I do my own. I hope when something happens they want to tell me about it and that they feel safe doing so.

We are all busy Momma’s. There are days when we know we did our best and there are days we wish we could do over and maybe, just a little better. We wish we were more present when our child laughed, more comforting when they cried, less annoyed when they asked the same question for the thousandth time. There are lots of ways to live our lives and its best we focus on what we can do best each day rather than what someone else, somewhere else said we should have done. I know my Mom is there for me and strove to do her best for all of us. I hope my own children are able to say the same about me one day.

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.

Gratitude Journal

DAS

DAS

 

1. Life

2. friendships renewed

3. having known and loved a friend

4. in-home speech therapy

5. spaindaily

6. apples

7. apple donuts

8. wooly sheep

9. rice  cereal

10. Kathy’s quick eye

’11. Ashley’s good work and encouragement

12. Michelle

13. getting to be the matron of honor in an upcoming wedding

14. a strong belly

15. a big girl sleeping in her big girl bed

16. a young reminder not to swear

17. a new babysitter

18. planning a dinner party and playdate

19. pesto pizza

20. Brioso

21. new families making this world a welcoming place