Queen of the Distracted

Imagine life in a house with 6 kids - now imagine if 5 of those kids and their father have ADD/ADHD (Attention Deficit Hyperactivity Disorder) - that is our house! Welcome to an inside view of my life and our home dominated by ADHD... THERE IS NEVER A DULL MOMENT!

Ladies and Gentlemen! Boys and Girls!

"Ladies and Gentlemen, Boys and Girls!"

Those were our oldest daughter Rachel's first words, from the time she was a toddler she would belt them out proudly standing on the arm of the couch. At the time we had no idea what ADHD was or that it would play such a central roll in our lives.

Since then we have learned a lot, not the least of which is how many individuals and families suffer in silence. We have experienced first hand how misunderstood and misrepresented a disorder can be.

As a family we decided to take action - to risk embarrassment and labeling to get this important message out to the world. Come join our family, share in our lives, and see ADD/ADHD as we see it...
A gift with a heavy price tag.

WELCOME to life in the ADD/ADHD House!

Friday, August 24, 2012

Send Your Child Back to School with Their Own User's Manual

"Hello Mr Lucus, this is Mary.  She's severely ADHD, you will probably wonder why we aren't medicating her, we are.  You should see her unmedicated.  She's also dyslexic and we finally got her IEP set up the end of last year.  She reads, like she writes, like she talks.  It's all garbled. It's okay she's used to people asking her to repeat herself 40 times and rephrase things so she can be understood.  She has an absolute phobia of math, expect massive stomach aches right before math time.  The nigh unto death, send me to the nurses office now kind. When she runs she leans farther and farther forward until she face plants. Oh, and she only sees out of one eye.  Have a good day, bye!" and I walked away.

Admittedly, not one of my finer transitions into a new school year but in my defense they sprung a new teacher on me last minute.  I certainly wasn't going to just drop her with her bag of learning differences at the door without any introductions or explanations.  That would not be fair to either of them, the first year teacher or my then 4th grade daughter.

I walked away thinking there has got to be a better way.

As a parent with lots of kids with special needs and the opportunity to work with lots of teachers over the years I realized a few things.  First, most of our teachers really had a deep desire to help.  Even when we pulled our kids out of a traditional school setting it really wasn't because of the teachers, it was the administration and the overall inability or unwillingness to meet our children's need that drove our decision.

It seemed to me that our teachers, administrators, and resource staff were at a terrible disadvantage.  They didn't have the years of experience I had with my child.  They were shooting in the dark, trying to hit a target.  I needed a way to turn on the lights and give them, and therefore my children, the advantage.

My husband and I came up a flip book presentation that the teacher could keep as a reference book about our child.  A book that would represent them, their strengths, their struggles, all the applicable tricks, a user manual of sorts.

Create a user manual for your child

1.  Start with a 1inch presentation binder with a clear cover so you can put a cover page of our own design on it. Title it something fun, decorate it to make it inviting.  Get dividers and label them for each section so that the teacher can easily access information in the future.
2.  Write an introduction letter to our child including specific learning differences and disabilities you have noticed, strengths, and challenges.  Include pictures of your child having fun, being silly, being a part of your family, show off their personality.  This helps your child's caretaker see them in a different light, more than what they may see in a classroom.

3.  Provide information on all the disabilities you listed.  Copy your favorite articles or sections from books that will enlighten the staff working with your child and help them to understand your child's experience better.  Pick items that are short and to the point, afterall, you want them to actually be read.  As you find information throughout the year you can pass it on to be added to the binder.

4.  Include a copy of your most recent set of modifications, 504, or IEP and results from testing you have had done in the past.

5.  Provide a bullet point list of strengths and things that you expect to be problems (be honest, there is no point in hiding or pretending there isn't an issue when there is).

6.  Provide work samples or examples of previous work to illustrate the bullet point list.  For example, for our daughter mentioned above we included samples of her writing and math.  Include samples that show off strengths also like art work, picture of performance groups or sports teams, cds of musical abilities.

7.  Provide tips and tricks you have learned over the years that help your child with whatever you anticipate the problems might be.  It's easy to blanket solutions - we know as parents of these unique kids that there are no blanket solutions. This is an opportunity to advocate what works for your child.  What fidgets might work and not be disruptive, how to calm a situation that's escalating, what works for meltdown, what prevents them, how to give transition time.  List all things that help your child function at their best with a brief explanation of why or what is accomplishes.

Ever get a new appliance or piece of technology and with it a user manual all wrapped in plastic only to slide it carefully into a filing cabinet never to be opened?  That is not what you want to happen with your carefully constructed user manual.  Make a face to face appointment with your child's teacher, sit down and go over the binder with them.  Walk them through it, addressing the highlights and most important information.

Headed to a Student Study Team, 504, or IEP meeting?  Make multiple copies so that each member of the team can follow along.  When the meeting starts tell them you have something you would like to share with the group, pass out the binders, and walk them through it. It will help the team know your child and their situation better.  It will help you cover all the points you need covered in your meeting.  It will show your dedication to making things work. It will help create a teamwork environment.

Mary's almost 16 now, she's a beautiful, bright, amazing young woman.  She is still severely ADHD, we now know she's not just dyslexic, but has Dyspraxia, she still has trouble with her Rs and dropping parts of words when she talks fast.  She has Sensory Processing Disorder, Motor Processing Disorder, problems crossing the mid-line, and amblyopia.  She's been back in public school for over a year now.  She had a part in both the fall and spring plays.  She got all As and one B (in PE) last year, no modified grades.

Oh, and she still leans forward when she runs, though she doesn't fall nearly as much and when she does she gets back up and keeps going.  Isn't that the goal, isn't that why we work so hard as parents.  She proves to me everyday that being a strong advocate for your child is worth it.

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1 comment:

Zoë Kessler said...


This post is genius! I wish I could be re-parented by you, but I guess I'll have to keep doing that for myself.

What's especially bittersweet to me is that first parents have to have the depth of awareness about their child that you show here with your insights. They also have to have the dedication to parenting and stamina to make the observations, educate themselves about their child's particular needs, challenges, etc., and only then will they be able to implement your excellent suggestion. While awareness is growing, I'm saddened that so many don't make the time to do this, or haven't got the resources. Still, change is happening.

I'm so grateful for your blog, and your excellent contribution to this field.

Keep up the great work, and thank you!

Zoë Kessler
Blogger, ADHD from A to Zoë
Psych Central.com