Notes from the Cookie Jar
http://cookienotes.blogspot.com/
 
“Scattered Mom”

“Scattered Mom” is a 30 something, west coast living, cookie baking, road tripping, key misplacing, perpetually lost blogger who can sniff out a Starbucks in a 50 mile radius.

Stick around..you’ll either pick up some great recipes or laugh at her forgetting where she parked the car. Again

Scattered Mom is a beautiful writer and shares insightful stories and information on Dyspraxia and Sensory Integration Issues as well as other aspects of her life.

Sample Post:

http://cookienotes.blogspot.com/2005/10/jakes-story.html

Wednesday, October 12, 2005
Jake’s Story
I couldn’t wait to become a mother. At 24, I was ready to have that little bundle to love and when Jake arrived, I cried for joy. He was mine. I finally, was a Mom.

Jake was a happy little person, and as easy to raise as most kids are. It wasn’t until he entered school that our perfect little world began to fall apart and was fraught with joy, despair, elation, and frustration. In the past 11 years as we have journeyed through three moves, the loss of Hub’s job and his trek back to university, and almost losing Hubs himself to a rare illness, we were also introduced to the world of advocating for Jake with the school system. It all began in grade one. Jake couldn’t print like the other kids, nor did he understand the math. However he did completely understand what was going on and instead would tour through the room, helping the other children with their work but never writing anything down himself. (which, looking back is SO Jake-he does everything orally) The teacher didn’t like this, and saw it immediately as ‘behavior’. Jake began to feel that he didn’t belong. So as a 5 year old will do, he decided that rather then be humiliated, he would prefer to be kicked out of the classroom.
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Living with Learning Disabilities

http://blog.seattlepi.com/learningdisabilities/
 
This blog will highlight the painful and detailed evolution of Zion’s disability – how we discovered it, how we navigate it, how we laugh, cry, and get mad over it. This is just one family’s struggle with learning disabilities.
 
Mizz Givens tells her family’s story from an interesting perspective as both an advocate for her son as well as a professional who works in the field of education. If you are interested in hearing some one’s else’s struggles and achievements, visit Andrea’s blog.
 
Mizz Givens (Andrea Givens)
mizz.givens@gmail.com

I am a 34-year-old wife and mother of two (editorial note — now three, Mizz Givens just had another son). My days are filled with commuting, working in the field of education, the YMCA, and the multitude of tasks that being a working wife and mother require. My downtime, if there is any, is usually spent reading, or cooking, or watching great shows on cable, because I love a good story.

My daughter Maya is gorgeous and talented and typically developing. My son Zion is charming and funny and severely learning disabled. And I can’t fix it. But I can advocate for him, I can provide supplemental services to support him, I can love him.
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Brad Elder’s website can be found at http://faculty-staff.ou.edu/E/Bradley.D.Elder-1/dys.html

Brad’s website does not seem to be actively maintained but his story on the front page is compelling. He has answers to several Frequently Asked Questions and other resources referenced on his site.

Here is Brad’s Story:

So here is my tail.
Sorry but its a little cluttered.

I have left this un spell checked so that you can see my world a little better.
Like I said this is really hard to put into words. Hard on the emotional level. But I think it will help me to do it. And I hope it will help you.

Ok, where to start. well I was diagnosed in the 6th graid. That really helped!!! It was the single biggest event in my life. Suddenly there was a name for my problem. I wasn’t lazy, or didn’t cair, or was……… what ever they called me that week. It was like the unevers was lifted off my sholders. I think I know what it must be like to slowly sufficate. I don’t know really how to describe it to you but i’ll try:

Imagen that nobody could see their hands. Everybody in the world. Nobody can see anything from the elbo down. Also assume that everybodys hands work just like thay do right now today. Now what if your hands didn’t work like “the normal hand”? What If you didn’t have any fingers? Everyone else can type, turn keys, scrach an ich, dress them sleves, tie there shoes, and feed them sleves. Every one but you. No one can see why you can’t “Do what everyone else can”. You don’t know why you can’t do what “normal” kids can. You just know you can’t. you walk and talk just like every one else. there is no way to see an obvous reason why you can’t do it. Adults don’t know. How could they. All they can see is a kid that isn’t doing what they were told to do. And they lable you lazy, slacker, rebbel, and what ever they can come up with…….They my even point you out to your class mates and tell them not to be like you.
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On this video are practical powerful tips for reading with your child that can dramatically improve your child’s reading capabilities especially for elementary school children. Our son has language based learning issues and this approach has helped him tremendously.

 
As a parent you know that reading is extremely important. Studies show that the more children read, the better readers and writers they become.

Now as you know, our son has language based learning issues. Getting him to sit still to read a book when he was young was torture. No matter how much I put inflection in my voice and used sound effects, I could only get a couple of minutes out of him. What I have found, however, is that over time I am able to add more and more time to our reading time together.

What I want to do today is to give you some really practical tips for reading with your child that can powerfully improve your child’s reading capabilities especially for elementary school kids.

First find out from your school, the comfort reading level of your child. Each “grade” has multiple reading levels and your child is testing probably at least twice during the school year to determine his or her reading level.

Then what you need to do is to get a list of books at your child’s comfort reading level as well as a list of books at the next two reading levels above. You can get these lists either from your school, your school library, the public library and or online resources. For instance, Scholastic has an online book wizard that helps to list books by reading level.

Of course, there are many systematic approaches to reading levels and you need to understand which system your school uses. For instance some of the approaches for reading levels are Guided Reading, Basal Level, DRP (Degrees of Reading Power), Reading Recovery, DRA Level and Lexile Level. Our school uses the Basal rating system and our son’s comfort reading level is at PP2.

Then get a bunch of books at your child’s comfort reading level and then some books above your child’s comfort reading level. The books which are above your child’s comfort reading level (just one or two levels above) are the books that you read out loud to your child. Try to read out loud to your child each day for 15 to 20 minutes.
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The recent diagnosis of ADD (ADHD inattentive) for our son has resulted in a major framework shift or me. Learning that he has a lifelong disability that will make life more difficult than it already is causes waves of sadness to come over me. I realize that in order to move on from these feelings, I need to face them and embrace them and then let them go.

 

 
Learning Issues, ADD and Grief

So I call my little peanut, my little onion as well because we just keep peeling back the layers to understand more. As you know, we recently got a diagnosis of ADHD (inattentive) for our son. This, I recently realized, has been a dramatic framework shift for me. Let me explain.

Because he is young, we have been working on and with his learning issues and trying to figure out which issues are based on learning differences and which are based on immaturity. The learning needs school that he has been attending is a transition school. This means that they work with the child to discover their strengths and to establish methodologies and frameworks that work to help the child address their learning weaknesses. They also teach the child to advocate for themselves and their learning needs. When the child has a strong learning toolset and the understanding and mindset to be their own learning advocate, the goal is to transition them back to a mainstream school.
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Power Moms Unite
http://www.powermomsunite.com

Candace McLane combines her practical experience as a mom with ADHD children with her professional experience as an occupational therapist to present clear, well thought out ideas for managing life. She has many great suggestions that not only are good for kids with ADHD but for family life in general. Power Moms Unite is definitely a great resource!
 
 
Candace McLane, MA

I am the Mom CEO of a large family (1 spouse, 5 kids), whose many members struggle to manage their ADHD. A retired occupational therapist, I am a tenacious advocate for families living with ADHD, ODD, and other co-morbid diagnoses. I am a frequent speaker for schools, churches, and various civic organizations on topics about ADHD and large families with special needs. If you are in the Philadelphia/NJ/DC area I would love to share my experiences with you.

I hope the site provides laughter, encouragement, insights, and conversation… as well as a link to accurate, reputable information. I look forward to swapping stories with you.

Thanks for participating, Candace McLane, MA
 

 
Sample of a Blog Entry

http://www.powermomsunite.com/2009/04/13/striking-a-balance-summer-survival-tips-for-families-managing-adhd/

Striking a Balance: Summer Survival Tips for Families Managing ADHD

One major issue with ADHD and summer vacations is the bored factor. Once the novelty of having all that free-time-to-do-anything wears away, what to do with all that free time becomes a problem. On the other hand, over-scheduling and over-planning the summer can lead to burn-out and irritability for both parents and children. The art of managing ADHD during the summer is really about the art of finding balance. Several strategies can help strike this balance.

Keep a calendar: Use a monthly or weekly calendar and write down vacation, camp and community trip dates. Kids need routine to feel secure, but be sure to leave some dates empty to allow for free time to simple create and imagine in the back yard.

Prescript your day: Early in the day, sit with your child and review what they want to accomplish and what you need to accomplish. Negotiate how each of you will spend your time so as not to conflict. Explicitly state how you expect your child to behave for any important activities (like that very important conference call at 1PM) and be sure to reward them for following the “script.”

Make a summer contract: Use the summer as an opportunity to help your child explore their interests, reinforce their academic skills, and find their passions. Write out a contract with your child, in which they list their goals for the summer. Goals could include places they would like to visit, books they would like to read, cub scout activities they would like to complete, models they would like to build- the list of possibilities is endless. Include goals you and the teacher identify as well. If you have a therapist, consult them regarding activities to persue over the summer break. Activities can be focused on building a friendship with a particular friend, trying new foods with dinner, volunteering at a local soup kitchen, or learning the steps to complimenting a sibling. Set a due date and reward for completing each goal. Consider rewarding the child with a bonus for completing all their goals for the summer.
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http://ldparents.blogspot.com

Anne

I’m a single mom with two great kids, each with their own unique learning style.

Anne writes in a clean straightforward fashion sharing a ton of great information that she has learned from ten years of working with, exploring and understanding her sons’ learning differences.

Here is Anne’s first blog post. It can be found at http://ldparents.blogspot.com/2009/04/in-beginning.html

In the beginning

I don’t really know where to begin. The earliest years of my son’s life were normal, blissful, happy. He didn’t talk much but communicated in his way and we seemed to share some innate ability to understand each other.

Around his second birthday, his pediatrician finally convinced me to have him start speech therapy so she “could hear his beautiful voice.”

Speech therapy was successful but came with what seemed at the time like an ominous prediction from his speech therapist. “Watch out for language-based learning disabilities as your son gets older.”

Ten years later I’m thankful for the recommendation. That speech therapist was right on the money, the language deficits my son experienced as a baby and toddler were indicative of problems he would experience with reading and writing and language in general.

My hope for this blog is to share some experiences and to encourage other parents to share theirs. My son has had many successes in his educational career and I’ve done my best to stay on top of all the latest research, therapies and educational issues.

Most importantly, I love to tell stories. My kids’ stories are the best. When I lost my job last week and my son and I were discussing what was next, he suggested I write a book. (Actually, his first suggestion was that I get a costume and stand out on the street corner waving a sign for a local business, but I digress.)

I asked him what the book would be about and he said, “It’d be about us. We’ve lived lots of places and done lots of things. First you could talk, then I could tell my side, then J (little sister) could tell her side.”

Great idea. But, since his mother shares his short attention span, a blog will have to suffice for now.

Anxiety issues as well as depression and learning problems tend to coexist with ADHD. Some children, however, are incorrectly diagnosed with ADHD when in fact they have an anxiety disorder. Other children have both symptoms of anxiety disorder and ADHD but the medications for one can actually cause more harm than good.

Any treatment option for a child with ADHD needs to look at the child holistically and make sure that all factors are taken into account and monitored.

 
Anxiety issues as well as depression and learning problems tend to coexist with ADHD. Recent studies have shown that one-fourth of children with ADHD exhibit some symptoms of an anxiety disorder whereas between 5 and 15% of children in the general population are diagnosed with an anxiety disorder.

Symptoms of anxiety include:
1. Anxious or fearful feelings without an apparent cause
2. Chronic exaggerated worry
3. Problems with concentration or distractibility
4. Insomnia

And there are physical symptoms as well such as headaches and stomach aches.

The challenge with all of this is that some children have an anxiety disorder and it mimics the signs of ADHD but they only have the anxiety disorder. Other children have anxiety issues and ADHD but the medication prescribed for ADHD can exacerbate the anxiety issues. In this case, the anxiety must somehow be treated before the ADHD.

I fully believe that there is a biological link to many of the disorders among the spectrum of ADHD, anxiety, depression, Asperger’s, etc. but the diagnosis and treatment is COMPLICATED.

I do believe our son has some anxiety issues. He is afraid of the dark and he is afraid to sleep alone. In addition, any time we are changing the routine by either taking a weekend trip or starting a new sports season or trying out a new activity, he gets highly highly anxious about it.

However, he does not exhibit the symptoms of an anxiety disorder that I just talked about. He is not anxious or fearful without an apparent cause; he does not exhibit chronic exaggerated worry; he does not have insomnia and he does not show the physical symptoms of anxiety. He does have problems with concentration and distractibility

Let me share some examples. We were planning for our annual vacation. We had been talking about it for a while. Our son had been expressing that he was going to miss home, that he was going to miss the dog and constantly asking questions about where we were going, how long we were going to be gone for, what we were going to do, where we were going to sleep, where and what we were going to eat and so forth. We realize that changes and transitions are difficult for him so we do discuss these questions and many more pretty intensely for about a week before heading off. Well the night before leaving .. late in the night because we were still packing, he got hysterical about going away. Big tears and sobs and crying that he did not want to go – he was absolutely hysterical.

This happens too with a new activity. For instance, he played basketball for the first time with a township team this winter. For the first several weeks, we could not get him out on the basketball floor to play and learn. So we kept going week after week, hanging out with him on the sidelines, hoping that over time he would be ready to jump in. This did not happen. So we ended up inviting his best friend to come along so that they could do it together. Problem solved. They jumped in together and had a ball.

So why am I rambling about his anxieties? He definitely exhibits many more anxieties than a typical child his age. However, when I look at the “checklist” for anxiety disorders, he does not seem to fit there well either.

As you know, we have received a recent diagnosis of ADHD inattentive for our son but as advocates we need to make sure that the doctors and therapists that we work with are fully aware of his anxiety issues and are addressing the child holistically. In addition, should we go down the path of medication, we need to be especially vigilant about observing the effect of the medication on not only the ADHD but also his anxieties. There is no definitive tests for either ADHD or anxiety so the analysis and treatment moving forward for our son will continue to be a case of observation, experimentation and advocating.

Join me next time when I share with you some of my strategies for addressing his anxiety issues. As always, thank you for watching and until next time.

Karen

http://slurpinglife.typepad.com/

If you want help in keeping things in perspective on your life and challenges, read Melody’s blog – she is truly amazing!

Melody

A mom by birth and adoption shares – through photography, writing and humor – parenting boys who live with autism, ADHD, cerebral palsy, fetal alcohol spectrum disorder and more. Reminding everyone that children with special needs are kids.

Why I Blog…

My special purpose sons take me to places daily in mind and heart that I would have never known existed without them. In sharing photos and a few words from our daily life, I encourage you to look at your life with humor, hope and the reality that you do what you can do when you can do it.

A sample posting:

http://slurpinglife.typepad.com/slurping_life/2009/05/love-thursday-special.html

Love Thursday ~ Special

I look at this child of mine and see so much more than you.

I see his pain. His intense struggles. His once physically abused and broken body.

His kind, forgiving spirit. His acceptance of difference.

His heart that loves so, so deeply.

Friday morning at an unbelievably early hour our family, including Grandma, will head to our State’s summer Special Olympics.

And…

Wil will be swimming the 25m and 50m freestyle events.

It is his first time competing in anything other than daily scuffles with his brothers.

He’s a bit nervous.

And way psyched.

This beautiful soul…our miracle child…has overcome so much. He has struggled, persisted and accomplished things the experts said would not be possible.

We are so proud of him.

We are so blessed by him.

We love him beyond measure.

I assure you that all love and GO WIL! you send this way will be enthusiastically received and deeply appreciated by a special eleven year old boy.

http://canmombecalm.blogspot.com

Jennifer Choi has two special needs kids. Her blog posts are written in a compelling manner that shares a tremendous amount of information and wisdom. Her writing is thoughtful, information, emotional yet not dominated by emotion, if you know what I mean. She is a really terrific resource! Check her out!

Jennifer Choi

About Me

Last year, while on maternity leave with my second baby, my oldest son, Logan, then 3, went from being very withdrawn in preschool to very aggressive and was about to be expelled! After getting him evaluated, I soon found myself quitting my job as a publicist and a few months later, I realized I had not one but two children with special needs with issues like hyperactivity, impulsivity, difficulty feeding, speech delays, some oppositional behavior and sensory processing disorder. I promised myself I would tackle this problem like the way I did my job. I would map out my plan and beat it down. I immersed myself in learning things like SPD, ADHD, and gluten/casein free diets. Last year, I checked myself in the emergency room with chest pains and difficulty breathing. It took awhile to figure it out but finally I was diagnosed: panic episodes. I wasn’t beating anything. It was beating me. Well, no more. I want to be happy. I want my kids to get better. I want my marriage to be strong. I know I can do this. I just have to be calm and take it one step at a time.

SAMPLE BLOG POST:

The original post can be found at http://canmombecalm.blogspot.com/2009/06/pr-backlash-of-supreme-court-victory.html

PR Backlash of the Supreme Court “Victory”

When I was in my twenties, I was very involved with my identity as a Korean American woman. It was a really big deal to me. I worked for a women’s organization that was run by Korean American women and for a couple of years, we set up conferences that discussed issues that affected us as Asians and as women.

In many ways, being an Asian American woman was a double blow. As Asians, we dealt with a plethora of stereotypes: complacent nerds, Harvard bound math geniuses, sleazy Chinatown gangsters, and perpetual foreigners despite being raised or even born in the U.S. (Do you know how many times I’ve been asked where I’m from and after I say “New York,” the person says, “No, where are you really from?”)

As Asian American women, our stereotype paints us as super-submissive rugs to step on and/or exotic sex kittens. We are marginalized by mainstream American society and we are also marginalized by our male Asian counterparts. There is a reason that you see so many Asian women married to non-Asian men. I know some men have fetishes for Asian women but there is another side to it. Some Asian women sometimes have a hard time dealing with the double standards of Asian men and so they naturally fall in love with men who are not unfair and selfish. (BTW, not all Asian American men are like this- many are really great to their wives.)

I bring this up today because I read something disturbing after doing the happy dance upon hearing the recent Supreme court ruling that says that parents can ask for tuition reimbursement for a private special education school even if they never had their child in a public special education setting. Jen Laviano, a special education lawyer wrote an insightful blog post lamenting how the evening news covered the story in a way that focused more on the costs implicated in the ruling. If you want to hear some dissenting lay opinions, read the comments on Sue Shellenbarger’s blog in the Wall Street Journal. Words like “retard,” “reform school,” “hood,” and “flipping burgers at McDonald’s” were used by commenters. It wasn’t pretty.

Any special needs parent knows that the cost spent now will mean a lot less spent later. It could also result in a great contribution to society. They also know that a child placed in an inappropriate educational setting will negatively impact the child’s classmates’ opportunity to learn as well. But here’s the problem: only the parents of special needs families know this. Possibly included in this circle are the teachers who teach these classes and parents of the special needs child’s classmates who are aware that the child is negatively impacting their own child’s education. If we are lucky, the teacher and the other parents will recognize the child has special needs. If we aren’t, the child and his parents will be painted with numerous assumptions which would be hurtful, not to mention counter-productive.
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