Our Journey with ADHD has been a long and challenging road. Once we got over the denial that it was actually ADHD, I began a search for something, anything, that could help my son. Anyone who has traveled down this road knows the heartaches and hopelessness that often is so overwhelming that you just want to throw your hands in the air and scream "I GIVE UP!" But you can't give up, because it is your sweet little child who desparately needs your help and you find a way to go on.
There is lots of information out there but I didn't find a good place that consolidated all the different resources and things that should be considered when embarking on this journey. In my ADHD Support Group we talk alot about using the tools in our toolbox - because it doesn't always work for all kids, and sometimes requires a combination of things in order to help a child. The best thing you can do is equip yourself properly and gather all possible tools so that when needed you can pull them out of your toolbox and use them as they fit the situation. The following is the beginning of "My ADHD Toolbox" - a list of things that I wish someone had given me at the beginning. The list may seem long and a little overwhelming, but I have tried to put the basic information first, so start with the first few resources and then come back for more later. Feel free to add anything in the comments that has helped you that I might not have listed!
Disclaimer: I am not a doctor or any type of trained professional, just a concerned parent that is willing to go to the ends of the earth to help my son. There is a wealth of information out there and this is by no means a complete list. This is merely a collection of resources that I have found on my journey in the hopes that it may help another parent on their journey.
CHADD - Children and Adults with Attention Deficit Hyperactivity Disorder
CHADD is a national US based non-profit organization providing education, advocacy and support for individuals with AD/HD. In addition to their informative Web site, CHADD also publishes a variety of printed materials to keep members and professionals current on research advances, medications and treatments affecting individuals with AD/HD. These materials include Attention! magazine, the CHADD Information and Resource Guide to AD/HD, News From CHADD, a free electronically mailed current events newsletter, as well as other publications of specific interest to educators, professionals and parents.
There is alot of great information under the link "Understanding ADHD" and I used the "Finding Support" link to find a local gal who does Parent to Parent classes who has also started a support group that I attend monthly.
Support Groups - find one or create your own!
If you live in Colorado Springs, we are meeting once a month at Penrose Hospital Main and we would love to have you join us! Send me an email and I will give you more details - firstname.lastname@example.org. Ours is coordinated by Jane Anderson who is a Parent-to-Parent Teacher trained by CHADD. They are a good source when looking for a support group. You can also check with some of the local church organizations, they may have their own support groups.
It has been helpful, encouraging, and so validating to have some other mom's who understand exactly what we are going through and they always have suggestions or recommendations that have helped. They have been there, done that, and it is so refreshing to talk to someone who understands! You have to take care of yourself and this is one outlet I highly recommend!
Books - There are so many, how do I chose one to start with?
When my son was diagnosed by the Psychologist with ADHD, he recommended the following book and said it was written by a couple of guys who have ADHD themselves:
- Driven to Distraction by Edward Hallowell
It was a great book to start with and really helped me to understand more about ADHD and how to begin to help my son.
After that I have gone on to read the following books:
- Delivered from Distraction by Edward Hallowell
- Answers to Distraction by Edward Hallowell
- Healing ADD by Daniel Amen
- Dyslexia and ADHD - The Miracle Cure by Wynford Dore
- Boys & Girls Learn Differently by Michael Gurian
BOOKS TO BE READ LIST:
- Meeting the Challenge by Jim Fay & Foster Cline
- The Out-of-Sync Child by Carol Stock Kranowitz
- Emotional Intelligence by Daniel Coleman
- Why ADHD Doesn't Mean Disaster by Dennis Swanberg
- Getting to YES by Roger Fisher
- The Gift of ADHD by Lara Honos-Webb
- The Gift of ADHD Activity Book by Lara Honos-Webb
I am currently reading the latest book by Edward Hallowell called "Superparenting for ADD" since I have become very clearly aware that parenting strategies that one would use with normal kids go completely out the window when dealing with a kid with ADHD. Trust me, I have read so many parenting books and articles and tried them all... with very little or no success! Their minds just think differently, and thus parenting should be adjusted accordingly.
Psychiatrists, Psychologists & Therapists... Oh My!
We started out seeing a Psychiatrist and he is the doctor who has prescribed the medications we are currently using with our son. He was recommended by friends and our Pediatrician and has alot of experience working with children and ADHD. He has helped us navigate the way with Medications. Although I would prefer that we did not have to use medications, it was necessary in order to help my son come back to a neutral state so that we could begin to teach him some coping skills.
We used a Psychologist (recommended by the Psychiatrist) to do the evalutation and IQ testing to determine if our son had any learning disabilities and better understand his educational needs. We determined that he was a very bright child, on the verge of genius but his common sense scores were low - which makes sense because it was those logical, common sense situations at school and home that cause the biggest frustrations and meltdowns for him!
We also took our son to a Child Therapist weekly for awhile to help him work through some things and help us get an idea of how he was doing emotionally. She would do sand play with him and be able to share insights on how he was feeling or how he was dealing with issues at school.
How do I find someone?
Talk to your friends and family members.
Ask your pediatrician who they recommend.
Contact your Mental Health Insurance Company and get a list of providers on your plan, then call and interview them and ask them questions to make sure they will be a good fit.
IDEA(IEP)/504 - What are they and do I need them?
CHADD has a good website that explains the differences and provides information to help you determine if this is needed for your child.
Each child is different and may or may not qualify for either an IEP or 504 plan, but you should read and know your rights so that you can have this as part of your toolbox when dealing with the school systems.
Anxiety & Depression - similar symptoms to ADHD
I know personally that when I am anxious about something, I have a hard time focusing - say you are late for an important appointment and you can't find your keys - they could be right in front of you but because you are anxious, you can't focus well enough to locate them!
Many times Anxiety and Depression can accompany ADHD or exhibit ADHD like symptoms so it is important to be informed and not make this determination on your own. You should consult with a trained professional or psychiatrist to properly diagnose your child.
Here are some links to some sites that explain Anxiety and Depression as it applies to children of different ages. As you can see, a good number of the symptoms are similar to those of ADHD:
My son has both Anxiety and ADHD but we have worked closely with our Psychiatrist and tried treating both of them separately to see if one issue was causing the other issue. We determined that just treating one or the other was not a complete solution, but this was not something we could have determined on our own.
Sensory Integration Issues & Occupational Therapy (OT)
If a child has ADHD symptoms, his nervous system may have additional issues with sensory integration. A child with sensory-integration issues finds it difficult to process or deal with external stimuli, as does a child with attention deficits. Sensory integration issues often manifest as tantrums over socks that don't 'fit', shirts with collars or tags, a desire to wear sweats, meltdowns in active environments, auditory defensiveness in regard to noisyenvironments, etc. To learn more about children who have issues with both ADHD and sensory integration, I highly recommend "The Out of Sync Child", by Carol Kranowitz.
Excerpt taken from URL:
Note: This book is also on my list of books to read.
Here is another link that talks more about Sensory Integration Issues with definitions:
I looked for local centers who provide Occupational Therapy and found the Child Development Center in Colorado Springs. They evaluated my son and we have now begun weekly OT appointments to help him with fine motor skills issues related to writing. We go once a week for 30 minutes and my son gets to have some fun, while working on his skills. Here is the link for the Child Development Center:
Therapeutic Listening is a structured program of listening to specially designed music that is individually selected for each client by a trained therapist. It is a helpful therapy for those with sensory processing disorders such as autism or attention deficit disorders (ADD or ADHD), and those suffering the effects of fetal alcohol syndrome.
Following is a link to a handout we received from the Child Development Center in Colorado Springs with information on Therapeutic Listening:
We purchased the Sennheiser HD500A Headphones from Vital Sounds (vitalsounds.com) and we just started our Listening Program this week.
My mom stumbled upon this while researching treatment options for my son. Based on the research I have done and what I understand about our brains, it makes alot of sense.
I located a gal locally in Colorado Springs who offers this Brain Integration and we had it done with my son. It took 24 hours and we have seen improvements in several areas. He finally started riding his bike after years of being too scared to ride. His reading has improved and he actually enjoys reading now. Here is her website:
I first heard about biofeedback in one of Hallowell's books. I kind of stumbled upon this when I was looking for a therapist who specializes in ADHD to help with the treatement for my son. I had called my Mental Health Insurance Company and they gave me a list of therapists and I found a therapist who also uses Biofeedback. Here is a link to her page with some basic information:
Biofeedback is helping my son to learn to self manage his emotions and we are also working on relaxation techniques. He is doing better and better each week with his emotions and meltdowns.
Diet - does it really make a difference?
Recently my sister was diagnosed with allergies to gluten and casein and in my quest to find a good cookbook for her for Christmas, I stumbled upon the cookbook "The Kid-Friendly ADHD & Autism Cookbook" by Pamela Compart & Dana Laake. I bought it for myself and began to do some research. After reading alot online about it and reading the beginning part of the book, it all made sense. My children could have allergies to gluten and/or casein based on my genes and they have ADHD as well so I figured it couldn't hurt to give it a try! The week before Christmas Break we started on the gluten-free, casein-free diet. At first I didn't really notice a difference and there were days that seemed worse but it has slowly and consistently gotten better and better. We are seeing less meltdowns and behavior issues and both my boys are just in a better mood! We decided to do it as a family because it is not fair for one person to be able to eat cheese and the others not be able to. We are over 1 month GFCF and it is getting easier and easier to cook meals. It is a challenge to go out to eat because the kids see all the stuff on the menu they really would rather eat, but have to chose something else that is GFCF. Here are some resources that I have found helpful regarding the GFCF Diet:
There are tons of blogs of people who are gluten-free and/or casein free, but here are a few of my favorites:
There are also 2 Yahoo Groups with some very knowledgeable parents who are always willing to help answer questions or provide recommendations based on their experiences:
I have the following cookbooks:
- The Kid-Friendly ADHD & Autism Cookbook by Pamela Compart & Dana Laake
- The Super Allergy Girl GF, CF, NF Allergy & Celiac Cookbook by Lisa Lundy
- Special Diets for Special Kids by Lisa Lewis
- Special Diets for Special Kids Two by Lisa Lewis
There are also alot of recipes online (some links above) and you can search for what you want to make with "GFCF" in the search string and you can normally find a suitable recipe with substitutions.
NEW BOOK - MUST HAVE!
The Autism & ADHD Diet by Barrie Silberberg
It is a very easy read and has everything you need to know or wanted to ask about starting the gluten-free, casein-free diet! Lots of resources, menu ideas, info on reading labels and so much more! I highly recommend this book if you are contemplating changing your child's diet.
Based on my research and information I have read in some of the books I mention above, there are theories that children with ADHD are deficient in several minerals like Omega3-6's, Zinc, Magnesium, etc. I have only begun to try and figure out this side of the treatment. I do give my son an over the counter Omega supplement and recently started a Children's Zinc Supplement. We also give him a good multi-vitamin.
I am hoping to find a local doctor who can help determine what supplements my son needs and the dosages required to help him.
My son has struggle with writing since Kindergarten. He is a perfectionist and there were times when he would be rushed by his teacher and he began to equate rushed writing with bad writing. It got to the point where he wouldn't even start writing if he felt he didn't have enough time to do it right. Even in 2nd grade he is still reversing letters and numbers and it is as if the formation of the letters is not 100% automatic to him still - and thus it requires even more concentration to form them correctly, let alone remember what he was writing too! We had hime tested for Dyslexia but there are no signs at this point. He is beginning to recognize his reversed letters and correct them but still struggles with it on a regular basis. Many times I have to do the writing for him on his homework because he has just shutdown and can't do it anymore. We have been concerned because the further he goes in school, the more writing that will be required of him.
In one of the many books I read, it actually validated the fact that writing can be a common issue for kids with ADHD. They even had a formal name for it, but I cannot find the book and section in which it talked about this right now.
Famous People with ADHD
There are many lists of famous people who have ADHD and have become highly successful people - sometimes it is helpful to let children know they are not alone and find someone on the list that they look up to or can set a good example for them. Many are not aware that Michael Phelps, the swimmer who set a new world record and won 8 gold medals in the 2008 Olympics has ADHD. My son thinks he is so cool and even dressed up like him for Halloween last year - not in his speedo, but the warmup suit he wears over his speedo! :)
Here are some of the lists... you might be suprised who you find!
Do your own search and see who else you can find!
Think outside the box - use their interests to your advantage
It is no secret that my son loves dinosaurs. I think he would be perfectly happy to have a pet Tyranasarus Rex! Recently I have used this to my advantage in the mornings in getting him to decide on a breakfast - I have renamed normal breakfasts to involve these ancient creatures. For example, we have Velociraptor eggs with Ankylosaurus sausage scrambled together and Pteradactyl Juice! It makes a boring breakfast fun and interesting! Be creative and have fun with it...
Take Care of Yourself!
As a loving parent, we often make sacrifices to help out our kids. You can't be the best parent you can be if you don't take the time to take care of yourself. Everyone deserves a break once in awhile. Find a hobby or just setup regular outings with your friends. Even if it is a couple of hours every week, you have to do something to de-stress and unwind so that you can be the best parent you can be for your child! Find a work-out buddy, take a yoga class, find a reading club, anything that gives you that well deserved break!
I have found that attending a weekly Bible Study is just what I need to have that break each week and take some time for me. My friends in my Bible Study group have been wonderful and so supportive of everything we have gone through. They also help celebrate the successes and make it all seem that much more bearable. I appreciate my Bible Study friends... more than they will ever know!
I will continue to add to this list as I remember other things we have tried or find more information to share, so you might want to check back occassionally and see if there is anything new. I will try and post it at the bottom and label it with a date added so that it is easy for you to find. Good Luck on your journey and remember, YOU ARE NOT ALONE!
Updated 5-26-09 to add reference to new book "The Autism & ADHD Diet" by Barrie Silberberg under the Diet section.