Sherry Gomez and Tammy Rose, founder of FACE 22 (Families Advocating for Chromosomal Education), join Marianne Russo to discuss 22q11.2 Deletion Syndrome.
The Coffee Klatch is a virtual cup of coffee for parents of special needs children. We bring you award winning authors, expert psychiatrists, psychologists, physicians, advocates and internationally renowned children's foundations to help you raise your special needs child. You are your child's best advocate - if not you then who - become an informed educated parent.
The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.
National Disability Rights Network
The National Disability Rights Network (NDRN) is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP) for individuals with disabilities. Collectively, the P&A/CAP network is the largest provider of legally based advocacy services to people with disabilities in the United States.
Study on Microduplication
Chromosome 22 Central
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Yearning for Normal
By Susan Ellison Busch
This heartbreaking journey will take Susan Busch and her son, Mike, through hospitals, backyards, schoolrooms, psychiatric wards, a court room, a burn unit, and the corridors of Susan's own heart. But beyond the struggles of adjusting to life with this deletion, there is a tale of humanity, with all its sorrow, love, and hope. This story is not just for the parents of children with 22q.11 Deletion syndrome, but for their friends, neighbors, doctors, nurses, teachers, speech therapists, social workers, police officers, paramedics, firefighters, ministers, and whoever else likes a good story.
328 pages - $17.99 (paperback)
How to Worry More Constructively
Smoothies for Kids
Games, Art and Jokes.
Clay Pot Snowmen
Cooking With Kids
Basic Skills–Shredding cheese
Video–Brene Brown on Vulnerability
Welcome to 22q Central!
Topic of the month
This is for all the moms of children with Asperger Syndrome.
Want to be more effective in helping your child? Want to give him the best possible training to deal with AS and succeed? Then you need to access a secret weapon.
Your immediate reaction may be, "Yeah, right! I'm already doing everything I can. More than I can! In fact, I'm so stressed that just the thought of doing more threatens to shut me down."
But I bet you're overlooking something. Over the years since our son was diagnosed, I've talked with a lot of mothers of kids with AS. And I've watched my wife, who, like most AS moms, has taken on the main burden of researching AS and dealing with schools, doctors and on and on and on. A common thread that ties many of these moms together is frustration. Look at AS online discussion boards and see how often moms talk about failing and being discouraged day after day.
But how many are truly failing? I think these moms care so passionately about their kids and want them to succeed so badly that they don't give themselves enough credit for what they're accomplishing.
If you have a goal for your child and you don't reach that goal, do you give yourself credit for the progress you helped your child make toward that goal? If you try your hardest to reach the top of a mountain and you make it halfway up, did you fail? YOU MADE IT HALFWAY UP A MOUNTAIN! And maybe you established a base camp to help you reach the top in the future.
Like many AS moms I've met, my wife easily qualifies for sainthood. Over the years, she's worked closely with our son, Drew, and with teachers and principals and psychologists and support groups and more. Drew is now living three hours away from us in college. He's making good grades and has friends. And my wife still frets over the messy state of his dorm room and worries she should have gotten him more "executive function" training.
My point is that no matter how much or how little progress you make, it's easy to overlook that progress and focus on falling short of perfection. My wife told me about hearing a psychologist warn, "Don't 'should' on yourself." That's always obsessing: "I should have done this," or "If I'd only done that."
Focusing on failure is depressing. It robs you of energy and generates stress. On the other hand, don't you feel good when you succeed? Don't you feel energized and optimistic? Don't you have better ideas and relate better to people?
That's the secret weapon. And you can legitimately tap into it if you just break down your objectives and goals into steps and give yourself credit for every step you and your child make toward success.
I've seen the results with kids. Praise their progress and they work harder to reach a goal. Criticize them and they tend to shut down and avoid even trying. The same thing works for us. If you focus on feeling good about progress instead of criticizing yourself for failure, your secret weapon kicks in.
Don't get me wrong. I'm not saying set low goals and be happy with mediocrity. I'm saying that giving yourself legitimate credit can put you into a positive frame of mind that gives you energy and better ideas. And if you have a positive attitude and energy when "Plan A" falls short, you're more likely to try "Plan B" -- and "Plan C" and "Plan D." My son has already exceeded expectations so many times I can't count them. In big ways and in small ways. And if I've played a significant part, it's because my wife helped me see the role I needed to play.
Them wives are heaven-sent.
So set your goals high. Help your child find the best in himself. Help her find the best in others. Don't settle for less than your best. But you may be the only person in a position to truly appreciate all you're doing for your child. Step back occasionally. Look at the progress you've made in the face of pretty stiff obstacles. And give yourself a pat on the back. I'm betting you deserve a lot more than that -- and I hope you see your reward in the eyes of your child every Mother's Day for the rest of your life.
ABOUT THE AUTHOR: Dan Coulter is the author of the book, "Life in the Asperger Lane," and the DVD, "Understanding Brothers and Sisters with Asperger Syndrome." You can read more of his articles and view all his video titles at coultervideo.com.
If you'd like to comment on this article, link to it, or like it on Facebook, you can find it at: http://coultervideo.com/articles/16/asperger-syndrome-and-moms-secret-weapon
Copyright Dan Coulter 2004 (Reissued in 2013) Used by Permission All Rights Reserved
- School Years
- Transition To Adulthood
- Sibling Relationships
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