A Place Where Families Come First for Autism
Posted by SugeyCE on December 10, 2009 under Standard | 
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Here is the embed for Sugey’s speech on autism. Be sure to check it out. She comes in about 2 minutes in after an introduction, plays a quick video (Which you’ll need to skip) and then talks for about an hour. There’s also a Q&A section at the end. Enjoy!
Posted by SugeyCE on under Standard | Be the First to Comment
Sugey Cruz Everts, President and Co-Founder of the Tommy Foundation will be giving a talk this evening on Autism to a group of nurses, social workers, and medical representatives on Autism. It will begin tonight at 6pm and be broadcast live on our Livestream channel. Be sure to tune in!
Posted by SugeyCE on December 4, 2009 under Standard | Be the First to Comment
“Each second we live is a new and unique moment of the universe, a moment that will never be again. And what do we teach our children? We teach them that two and two make four, and that Paris is the capital of France. When will we also teach them what they are? We should say to each of them: Do you know what you are? You are a marvel. You are unique. In all the years that have passed, there has never been another child like you. Your legs, your arms, your clever fingers, the way you move. You may become a Shakespeare, a Michelangelo, a Beethoven. You have the capacity for anything. Yes, you are a marvel. And when you grow up, can you then harm another who is, like you, a marvel? You must work, we must all work, to make the world worthy of its children.” Pablo Picasso
I want to talk today about perceived ability in our children and the limits we as a society place on them based on various external criteria. Perhaps I am just tired of hearing all too many of us tell our children—regardless of ability—what they can and can’t EVER do. We tell them that they will never have relationships; that they may never leave home and perhaps even that they may never speak. See as I see it, the problem with having a child or loved one with an Autism Spectrum Diagnosis isn’t the diagnosis—for all you have to do is meet certain criteria on a psychological test to get that—but the prognosis we feel is appropriate to pigeon-hole these children’s ability.
Perhaps it is me being naïve, a bleeding heart, or an eternal optimist—Lord knows that I have been called all three—but I never want to confine a child or anyone by the person that stands before me today. See life is a beautiful, wonderful journey with hills and valleys, and the best way to motivate any person is to find that which motivates them and passionately shine a light under them that they may achieve their full potential.
We have become a society so intrinsically fixated on “results” that we take away art, dance and cultural programs from our kids’ schools in order to focus on that which will make our children “functional.” Don’t get me wrong being a functional member of society is certainly important for the sake of the society, but I would take a child in passionate pursuit of their purpose in life any day over one miserably sitting in a cubicle wondering what they did with their life and replaying that Muppet Treasure Island song “There’s gotta be something better” in the back of their mind.
Just today I read an article concerning the rising rates of autism. (In case you have been under a rock the last few years it has sky-rocketed from 1 in 10,000 to 1 in 91 in less than 20 years). The article itself was not all that bad, but the comments afterwards in part inspired me to do this blog. The ignorance—for that is all that you can call it—from third parties unaffected by the condition or who know no one YET with the condition, isn’t surprising. The argument goes for many of these people that the rise in autism is simply that it is finally being diagnosed more accurately or that it is being over-diagnosed. Don’t get me wrong, I am not a huge fan of the current diagnostic criteria for the condition, however, people that say this have obviously never encountered the serious issues—social, developmental, sensory—that our children or loved one anywhere on the spectrum face each day.
But alas, I am used to the ignorance of those that don’t know what they don’t know. What does kill me a bit inside each time is the ignorance of a child’s own parent. I apologize if perhaps you get offended and this has been you in the past, but I hope you will take what I am about to say to heart and change for your own mental and emotional sanity as well as your child’s. In this particular article, a mom was claiming that her child diagnosed with what she terms mild autism would probably never fulfill his dream of becoming a pilot because he has a label now and that it is this label that will somehow chase him for the rest of his life and stop him from achieving his dreams. This is not only sad but also is enabling this child to develop avictim mentality when he has all the ability and potential to do whatever he wants. The only limitation this child could have for piloting is if he has vision or other physical issues. There are plenty of well-known people with Autism in history and today who were much more severe—Raun Kaufman, Temple Grandin, Wiliam Stillman to name a few—who defied and defy this every day.
My message to this mom is simple and two-fold. First, get down on your knees right now and thank God that the worst that you have to worry about with your child is a label following him for the rest of his life. What if you still had to clean dirty diapers on a 20 year old? What if you had no way of communicating with your child or still had no definitive way of doing it? What if your child was taller and bigger than you and terrified you because you didn’t know how to control them? What if your anxiety and concern for your child affected every area of your life—from your marriage, your other children, your friendships with others, your ability to even leave your home because you just are not sure how your child will react and whether or not they will be so over-stimulated that they will have a huge meltdown?
You my friend are selfish and not only that you are ignorant yourself. Ignorance is “lack of knowledge, education or information.” Your son will not be limited in his dreams and aspirations because of a label, he will be limited because of your lack of faith in his abilities! If all he ever hears is you—his own MOTHER– tell him that this label placed on him by others will keep him from doing the things he loves, than he will never try and he will never exert himself to a position of giving it his all.
I am so eternally grateful that I have been blessed to help people who have children all over the spectrum and who are on either side of the mild versus severe category. I thank you for sharing your children with me every day and showing me what these kids can all accomplish with love, determination and a bulldog mom and dad. I thank my son for showing me unconditional love. That little boy and his dad are the best things that have ever happened to me and his laugh warms my soul and his eyes pierce my very core. I thank my husband for being a good dad and educating himself about autism and being proactive. He hasn’t escaped into other tasks to avoid the hard work with our son, but has been my partner in the entire process and has taken it upon himself to personally meet with other dads to give them advice and show them how much their wives need their support—not just financially but as an understanding and passionate advocate for their child or children. I am grateful and blessed to have a supportive team around my child who understand him and love him and fight with me to show him that this world of ours is a safe and fun place to be and that when it is scary, we will be here to help him through it. And lastly, I am eternally grateful for my movement friends, who understand the monsters we are fighting all over the place for our children and who are putting aside our differences and preconceived notions to work together and make sure that this rate does not continue to increase. You are awesome warrior moms and dads and I love every single one of you.
So, random mom from article comment, please take heed and realize that your son is a gift to you. I hope that since you obviously are not the one doing it that somewhere along the line, he finds a mentor or coach that will inspire in him the seeds of greatness to go out and do all that his heart desires and he realizes his full potential. For your son, I wish only that he knows no limits and that you realize that you are a unique, beautiful, incredible marvel. A marvel that like Picasso said has yet to be defined and whose potential for greatness is limitless.
Posted by SugeyCE on November 28, 2009 under Standard | Read the First Comment
Tommy cleaning out the pumpkin pie tin
If you are like us, your child may be on a special diet. This recipe will not work for all diets, so please keep in mind that this worked for my son’s specific allergies–GF/CF/Almond Free etc… While Tommy has ALOT of allergies, other families we work with have to have their kids on ketogenic diets (high fat) because of epilepsy issues and others are on a Specific Carbohydrate diet (low carbs). This recipe would probably not fit those diets because it does have a bit of carbs.
If, however, like us you have been searching for years for more recipes that could help our kiddos not “miss out” on anything, then this is something you will appreciate. Tommy–with our help-devoured this. Both Rich and I definitely even think this might even taste better than regular gluten rich, casein rich, fat rich pumpkin pie! It was delicious, so I hope your family enjoys it as much as ours did.
PUMPKIN PIE
Adapted from: Nourishing Traditions
TOTAL TIME: 55 MIN.* MAKES 8-12 SERVINGS
Ingredients for Crust:
1 box Kinnikinnick GF/CF/Allergen Free Graham Crackers
6 tablespoons Spectrum Organic all Vegetable Shortening (instead of butter)
1 /3 cup of sugar or other sugar alternative
1. Mix all ingredients together
2. Use shortening to grease up pie pan (9 inch pan)
3. Pour Crust mixture in pan and refrigerate for 1 hour.
Ingredients for Pie:
1 Graham Cracker Crust made from scratch (see above)
1 15 oz can of pumpkin puree or 2 cups fresh baked pumpkin
3 eggs
1/3- ½ cup honey or other natural sweetener, to taste
1 tsp dried ginger or 1 Tbsp freshly grated ginger
1 tsp cinnamon
¼ tsp sea salt
¼ tsp powdered cloves
¼ tsp nutmeg
1 cup coconut milk (full fat)
Steps:
1. Line a 9 inch pie pan with your choice of gluten-free crust. Crack the eggs into a large bowl and beat well. Add the rest of the ingredients until thoroughly combined. Pour batter into pie crust.
2. To avoid the crust getting burned, cover edges of pie pan with strips of aluminum foil until they just over the edges of the pie crust.
3. Bake at 325 for 45 minutes or until firm.
Per Serving (doesn’t include crust): 96 Calories; 4g Fat (37.2% calories from fat); 3g Protein; 13g Carbohydrate; 1g Dietary Fiber; 64mg Cholesterol; 77mg Sodium.
Posted by SugeyCE on November 27, 2009 under Standard | Be the First to Comment
http://apps.facebook.com/chasecommunitygiving/charities/853399?src=wallpost&ref=mf
Chase Community Giving is a program run by Chase that will allow Facebook users to vote for local charities and non-profits, and help direct Chase corporate philanthropy dollars to eligible organizations in the following focus areas: education, healthcare, housing, the environment, combating hunger, arts and culture, human services, and animal welfare. The grassroots campaign aims to inspire a new way of corporate philanthropy.
The eligible charity receiving the most votes will be awarded $1 million, the top five runners-up will receive $100,000 each and the 100 finalists, including the top winners, will be awarded $25,000 each. Additionally, a special Advisory Board led by prominent national philanthropists will allocate $1 million to the nominated charities of its choice.
Chase will use Facebook to allow participants of the Chase Community Giving program to select local causes and organizations in need of support focused on the issues that matter most, enabling those organizations to make further tangible progress toward their missions. Voting for Round 1 ends December 11. Voting for Round 2 ends January 22, 2010 and the top charities will be announced on or around February 1.
The Chase Community Giving Advisory Board was formed to embody the spirit of giving back to local causes and the importance of community giving. The role of the Advisory Board will be to review the 100 finalists from Round 1 and the winners of Round 2 as determined by participant votes to help ensure the finalists meet the eligibility requirements and standards of the program. The Advisory Board will also choose one or more organizations, from those organizations receiving at least one vote, to be awarded a combined total of an additional $1 million.
The purpose of allowing access and becoming a fan of Chase Community Giving is so that administrators are able to track participant votes and to allow participants to spread the word of the program by giving users ability to comment on the charities that they vote for, and to notify friends about the program. We hope that participants will use the fan page to create awareness around the opportunity for charities to receive donations totaling millions of dollars from Chase’s philanthropy fund. It has no direct tie to Chase mail or email campaigns.
Voting for Round 1 will go from 11/15/09 until 11:59:59 p.m. ET on 12/11/09.
Voting for Round 2 will go from 01/15/10 until 11:59:59 p.m. ET on 01/22/10.
Winners from both Rounds will be determined once the votes have been tallied and it has been determined that all program eligibility standards and requirements have been met.
Media inquiries should be directed to JPMorgan Chase corporate media relations.
To view our page, click on the link below:
http://apps.facebook.com/chasecommunitygiving/charities/853399?src=wallpost&ref=mf
