Tuesday, January 30, 2007

Welcome to My Blog!

Welcome to my blog. As the CEO of CHADD I am constantly looking for ways to deliver information to the general public, and a blog is an effective way to do so!

I am the father of a 16 year-old son with the inattentive form of AD/HD. Andrew has a variety of co-occurring health and learning challenges. Even though I am blessed with a wonderful family, church, community, and access to professional resources paid for by health insurance, our journey has been one of frustration. I wish you success as you work for your own wellbeing or that of a family member.

We launched the new CHADD Web site last June, and continue to post information. I probably don’t have to tell you that the demands of technology can exceed the capacity of individuals to meet those demands! So, if there is a section that doesn’t have the information you’re looking for, please know that the CHADD staff are working diligently to post relevant information for you in a timely manner.

Last year our National Resource Center on AD/HD responded to 13,800 individual requests for assistance from 10,600 distinct people. We average 137,514 unique visitors a month to our web sites. 844 of these unique users a month speak Spanish as their primary language. We apologize for delays in responding to you, but there is a tremendous need for information and assistance and we do our best to respond.

We’re working on plans to celebrate CHADD’s 20th Anniversary this year. The celebration will last the entire year with the big event being our Annual International Conference, which will be held in Washington, D.C., November 7-10. The conference brings people affected by the disorder together with professionals and leading researchers in the field for several days of education and empowerment. Usually, a few hundred attendees are from outside the United States. It’s a great way to make people feel connected while raising awareness about the disorder.

Speaking of raising awareness… we’ve been making every effort to reach state legislators with information about AD/HD. We recently held receptions in Utah and Georgia, where we brought people affected by the disorder together with their public policymakers. In the last couple of years state policymakers have considered legislation that could impede vital communication between teachers and parents about a child’s learning and social challenges in the school setting. From personal experience, I know that teacher-parent communication about a child’s special needs is already a tremendous problem. What we don’t need is anti-psychiatry motivated obstacles to communication. CHADD, as a family-based organization, is an advocate of informed consent when schools recommend assessments and treatments, but teachers and parents must be able to talk about a child’s struggles. We plan to continue this important work in the coming year. Read more about our policy work.

The February issue of ATTENTION!® magazine is in the mail to members. For the first time we’re making our cover stories available to the public for free. The stories are about two parents sharing their experiences of “Struggle and Success,” raising children with AD/HD. If you’re not a member, the stories will provide you with a sneak peak at one of our member benefits. We are constantly struggling with how to make information and resources available to the public, while maintaining our focus as a family and consumer membership organization. To build a social movement to assist all persons with AD/HD and related disorders, we need paid memberships and donations from the public.

CHADD is about sharing the published peer-reviewed science of AD/HD, providing support for individuals where they live, and sharing the lived experience with others to provide better assistance. We are slowly building support for our community-based chapters but we are frustrated that resources are lacking in this area. We know that most people impacted by health and disability want science-based information and face-to-face support where they live.

Until my next posting, as those of us of Scottish ancestry say, “As aye.”


Anonymous said...

I'm happy but jealous that you feel blessed that among the resources accessable to you in your frustrating journey are your church and community. Our church, which we joined primarily for their youth program, was unable and unwilling to accept our son's differences and became yet another place where we felt he was unwelcome. The leaders of the youth program continuously had conversations with me regarding how he made them "uncomfortable" and this is supposed to be a place for "safe santuary". So now we haven't been to church in two years.

Anonymous said...

I am an adult that as a child my mother knew something was wrong but the Dr's then did not know what to diganose. I completed college with a lot of help. But once I got out into the work world my problems came to the surface with more jobs and lack of understanding from employers. At age 50 I have some answers that I wish were there when I was a kid. I could have made a better decison on my vocation. Too young to retire yet too old for employers to care. When I went to the state for help they told me if I do not have it down by now I never will. We need more help for adults also. Kids become adults. After finding out what was wrong after all these years and it was not my fault it has taken a load off my mind. I am a member of Chadd. thank you.

Anonymous said...

Dear Anonymous,

On behalf of the church, I am so very sorry for your experience. The good news is, Jesus never would have responded that way. The bad news is, He uses us on this earth.
Don't give up on Him because of us!
from a mother of two AD/HD teens who has AD/HD herself!

Unknown said...

Please don't blame all churches for the inadequacy of one. Many youth ministers are very young and have little experience. Visit a few churches. You may find a large, vibrant church with an older, professional youth minister and many additional, experienced volunteers who lend extra supervision and support.

Or, you may find a tiny church where there are just a few teens, so that each one is known and valued by the whole congregation.

Sometimes it helps to move from a church where the child is remembered for his troublesome childhood days to a new church where he can start over with a clean slate!

Also, be sure your child is getting all the interventions necessary so that he can behave appropriately in social situations. Interventions may include: social skills training, medication, counseling, behavior modification plan, communication skill training, etc.

Find out exactly what is causing the youth leaders to feel "uncomfortable." Are they concerned for his safety because he takes impulsive risks? Are they concerned about behaviors that might be "contagious" to others in the youth group, such as smoking, drinking, drug-use, or sexual promiscuity? Are they concerned that he does not respond to rules or directions and they are not sure how to handle him? Perhaps he would benefit from having a parent or a trained mentor (older teen) accompany him at youth activities until he is able to manage his own behavior in ways more acceptable to the cultural norms.

Another important piece of the puzzle is talking to the youth staff ahead of time about what to expect and how to handle problems that may arise. Can they call you to pick him up if they get into a situation they can't handle?

Youth leaders are usually not professional teachers or psychologists, so they need an extra measure of training and support from us in order to know what to do with a child who is not typical.

I raised two children, now adults, with ADHD and they periodically had difficulties with church and other social settings, but we kept working at it. Today they are active Christians and I am glad they were able to hold on to their faith and look beyond temporary problems. I pray that your son will be able to find the positive support he needs to grow into faithful Christian man.

Pastor Jon said...

I am saddened by your experience with the church. Unfortunately many people don't know how to work with children with special needs.

As a pastor and parent of a child with AD/HD, I have the priviledge of serving a church with a number of special needs children. Because of our experience we tend to be a place of welcome for families with special needs.

I can understand your frustration and don't blame you for staying away from the church. If you decide to explore a faith community again, I urge you to make a few inquiring phone calls. While we don't advertise our special needs abilities, we would certainly share them with anyone who inquired.

Rev. Jon Fregger

Laura said...

Yes, to the last comment that someone wrote about not giving up on Jesus because He doesn't give up on us...in reference to the initial comment. Try to find another church, a church is a safe haven like you said (or should be) and we need to be accepting of others-we are all different in Christ. My son has ADHD and is at times hard to be understood by others at the church but if you let it be known the condition openly then they should be able to handle and work with it. Shame on them if they can't - people with ADHD are God's unique creation!

Laura said...
This comment has been removed by a blog administrator.
Anonymous said...

I can relate to the church thing, it is hard to have our kids fit in and be accepted. We struggle with this also, but keep trying.
It is important to have fellowship with other christians.

I wanted to ask for some ideas on how do handle a teacher who recently did an eval. for Dr. on my daughter. The teacher seems to be unaware that she is diagnosised ADHD, even though I express that she takes med. and have told them she has a 504. Do these teachers never look in their cum file? What could I politely say to this teacher?
said frustrated mom

Anonymous said...

As the mother of a 20 year old son with ADD I can relate to your sorrows, joys and frustrations. As a counselor and likely ADD candidate myself, I often feel guilty for getting caught up in all of the issues, for not being able to "cure" my son. He has just started back in college and seems to be making some progress. I am very concerned with the employment problems as the patterns are already there. I would do whatever I can as a former Director of Career Services and loving parent to help with this research and dialogue.

Kona girl said...

I am a single mother with ADHD. I have 3 sons. My oldest is 18 and has severe Aspirgers. My middle is 16 and has ADHD. My youngest is also Aspirgers. I have lost a ton from the stress of these disorders. I lost my marriage of 19 years. Now I am single and don't know where to start. My oldest is so hard to control and I have no support. What do I do now with a young man who cannot function in the real world. The other two boys are doing ok. But now I am faced with ADHD and a career.

Dr josh said...

I am a sleep specialist/neurologist in San Antonio. I noticed that your website has little discussion of sleep disorders. As you may know, sleep problems are not only misdiagnosed as ADHD but also are important comorbidities. Please let me know if can be helpful.

Dr. Joshua Rotenberg
San Antonio, TX