I came across a great radio interview that I wanted to share. It is an interview with Donna Geffner, PhD who is the Director of Graduate Programs in Speech Language Pathology and Audiology at St. John's University in NY and Deborah Ross-Swain who is the Clinical Director and CEO of Swain Center for Listening, Communicating, and Learning. It is absolutely worth the 30 minutes especially if your child is newly diagnosed or if you suspect they may have Cental Auditory Processing Disorder. It was Dr. Geffner that diagnosed my son with APD.
The web address is www.blogtalkradio.com/search/CAPD
They are discussing their new book called "Auditory Processing Disorders: Assessment, Mangement, and Treatment." They pretty much cover everything from explaining the hearing process, red flags, academic and social success, to management strategies, remediation and therapies.
Please return to post you comments after you have a chance to listen to it. I would love to know what you think.
My 6 y.o. daughter woke up crying the other morning. When I asked her what was wrong, she said that I did not kiss her goodnight. I really had no defense. Guilty as charged! Thinking fast on my feet, I thought of the quick white lie and told her that I had kissed her after she had fallen asleep. I had managed to escape my daughter's hurt feelings only to come face-to-face with my own guilt.
The reason I had neglected to kiss her goodnight was that I was helping my son who has auditory processing disorder with his homework at 8:30 p.m. I know that I should not feel guilty. She was with my husband reading a story before bed. It was not like she was alone, but I feel the pressure to be there for everyone.
It is true that I don't give her as much attention, because, quite frankly, she does not need that much help with schoolwork. But, I can see that to a 6 y.o., it does seem like I am playing favorites. How do we give our learning disabled child all the attention that they need while not making our non-LD children feel slighted? I only have two children and can't help but wonder what the people with more children do? How do they cope? Will the non-LD child resent the lack of attention?
There is no perfect balancing act. I just pray in the end they both get what they need.
There are so many beautiful moments I spend in brief conversation with my son that I would like to share. Hopefully, he will appreciate me sharing them when he gets older (probably not). I do hope that he sees them not as sharing intimate details about our life, but as a way to encourage others to share their lives while dealing with APD/CAPD or other learning disabilities. I openly encourage all of you to share these special and inspiring moments with these beautiful children.
I was lying in bed ready to go to sleep when Zack crawled in next to me.
He said, "Did you read today?" I said, "No, I was too tired."
He asked, "Do you read every day?" I replied, "Yes, I love to read!"
He said, "I do, too!" and then, he laughed and said, "No, I don't!"
I said, "You don't like it because it is hard for you."
He quietly said, "Yes. It is hard for me."
Then, he reached out and held my hand...
My son had his final session of the neuropsychological testing we are having done to see if he has any other learning disabilities. We were asked to give consent to having him tested for Celiac disease so that he can participate in a research study to see if there is any link between learning disabilities and the presence of Celiac disease. For those of you not familiar with celiac disease, it is an imflammatory condition of the small intestine, induced by gluten. Gluten is the protein found in wheat, barley, and rye.
Now this would seem quite routine to most, but it just blew me out of the water. I test negative for Celiac disease, but have a gluten intolerance. In other words, even though I test negative, I have all the same symptoms of a person with the disease right down to an autoimmune thyroid disease (Hashimoto's thyroiditis).
Could it be that just putting my son on a gluten-free diet will cure him of his learning disability? Could it be that simple? Or is the damage done? Do we get a do-over? Can we take a Mulligan (for all you golfers out there)? I am equally encouraged and confused. While a gluten-free diet is not easy, I am praying for this easy way out. I am praying for all of us that the answer will be that simple.
To find out more about celiac disease, visit www.celiacdiseasecenter.columbia.edu
I have to be honest. Before, my son was diagnosed with Auditory Processing Disorder and before I realized he had Sensory Integration Dysfuntion, my main coping mechanism was a glass of wine (or two, or three...). While that does sometimes still seem to work, I think it is good to keep a handy list of ways to cope when things get ugly. Come on, you know what I mean!
I actually keep a list of coping mechanism that work for me. So here they are:
*walking away for a few minutes (sometimes FAR away)
*long, deep breaths (if you hyperventilate and pass out, you can't hear the whining anymore)
*listening to music on my ipod (this is good for drowning out the whining too)
*yoga (10 minutes will do, but a full-hour is better-How indulgent!)
*walking/running (if you really need to get even further away)
*a quiet room with candles and a good book (Okay, now I am just delusional!-no one with children really gets to do this)
*reading blogs that inspire me like http://www.thecoachshoppe.blogspot.com/
*reading celebrity blogs that make me laugh or take me out of my world for a bit like my favorite about John Mayer http://www.tryjm.blogspot.com/
side note: John Mayer is quite a gifted blogger himself, www.honeyee.com/johnmayer but I hear Jennifer Aniston has forbid him to blog about anything but music.
We all have our own coping mechanisms for dealing with the stress of CAPD/APD, ADD/ADHD, and learning disabilities, but how often do we use them? What are yours? Please click on the word "comments" above and share yours.
This is a tough one for me! I am, by nature, a Certified Control Freak. I just NEED to know! I feel like I need to know how this Auditory Processing Disorder will play out in my son's life. Will he be happy? Will he be successful? By this, I don't mean make megabucks, but more like, will he find his way? Who will he turn out to be?
Will he ultimately feel good about himself in spite of his learning disability or will he be angry and resentful? Will he spend the rest of his life feeling frustrated? Will school always be hard for him? Will he ever want to do more than the minimum when it comes to learning? Will he ever attend a lecture just for the sheer pleasure of learning?
Will I ever be okay in the space of "not knowing?" Will I ever stop trying to help him to be the best he can be? Am I doing enough? Am I doing too much?
Pema Chodron has a book entitled, "Comfortable with Uncertainty." Uncertainty is one of the places I get "stuck" as she calls it. She refers to these emotions as the ones that teach us where we are holding back. She recommends that we lean in to these emotions when the natural reaction is to back away.
For me, it is where I feel the most vulnerability. But, isn't it this vulnerability that is our connection to every other person on Earth. It is our common denominator. If we really lean into it, we experience the true essence of others and of ourselves. This is where we see the gift that our children with learning disabilities are to us. The place we experience the true joy that they are!
Where are you today? Are you leaning in or backing away?
To fight for services or not to fight? That is the question!!!
Even though Zack was diagnosed with Auditory Processing Disorder in December of last year, he receives no services from the school district. This week, he had his first science test of his school career with less than stellar results. I would have expected the results he got if he had not studied, but I studied with him. I made flash cards and made sure that he was prepared. I would have been satisfied if he was satisfied, but to see the look of disappointment on his face broke my heart. He knows he has the ability to do better and he wants better for himself.
I have spent the last few nights waking up in the middle of the night trying to figure out what to do with this. Do I lower my expectations? Does he have to lower his expectations? That thinking just does not sit well with me. I have a strong belief that you have to set a high bar and make every attempt to reach it. The issue is that Zack’s school district refuses to give him services based upon the fact that he is functioning at grade level.
When I met with the principal and assistant principal at the beginning of this year, I was ready for a fight. Now looking back, I feel like I was taken. They had me convinced that he was compensating well and did not need services; that his APD was mild and the classroom teacher would work with him.
Why do I allow people to make me question my own motivation; my own reality for that matter? My son’s struggle is there before me everyday. Why is it so hard for me to trust my gut and fight for what my son needs? I think that their feeling is that CAPD is not a learning disability. How long was it before ADD/ADHD caught on as a valid issue which required in-school services?
All this brings me back to when he was 2 ½. His pediatrician always told me that there was nothing wrong. I was the neurotic parent of a first born. His exact words were, “There are active children and very active children. You just have a very active one.” And I bought it; always deferring to the professional. What I did have was a child with a speech disorder and Sensory Integration Dysfunction. I was looking for a professional to tell me my gut feeling was right. Looking back, it is difficult not to knock myself for not trusting my gut; for not getting him help right away. We/he lost out on early intervention. But, I am trying to stay in the present moment.
So, six years later, here I am in that same position again.
While I was running and listening to my ipod, the song “Is Someone Getting the Best of You?” by the Foo Fighters came on. It made me think of the two meanings of the title. The meaning in the song for me is that the school district is getting the best of me (playing me for a fool). But, then, I thought about the other meaning it could have. Is my son getting the best that I have to offer?
My son deserves the best of me and he deserves someone not getting the best of me! He deserves the appropriate services to help him to deal with his Auditory Processing Disorder.
ON WITH THE FIGHT…