Autism, Asperger's and more, oh my!
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Autism, Asperger's and more, oh my!

Conductive Education is Amazing




a•maz•ing [ ə máyzing ]

Definition:
1. causing amazement: so extraordinary or wonderful as to be barely believable or to cause extreme surprise
  an amazing escape
2. outstanding: outstandingly good, skillful, or admirable ( informal )
  an amazing concert

Conductive Education is amazing.

For the past six weeks K and I have been attending a program for children with cerebral palsy called Conductive Education. The program has been amazing, the kids are amazing; the conductor is amazing, the parents are amazing, K is amazing! All of the little bits of things that have been taught over and over and over are sticking. You can see the progress in each child. Everyone has different goals to achieve yet the same exercise for all serves a multitude of purposes. K has tight spastic muscles while the others are loose. When we bend one knee and keep the other straight the emphasis for K is on keeping his leg straight while for the rest of the group it is holding the bent knee in center and keeping the foot flat. For some making any mark on the page is significant while for others practise with identifying shapes, size or same and different is the goal. For K, printing has been a challenge that he eagerly anticipates each day. There have even been some successes with using the potty. All of the children are encouraged to answer yes and no questions and using the voice is a goal for each. K has become very vocal, especially this past week, and has discovered the “echo” microphone and “sings” long renditions of "baba-babababa-ba-baba" all in varying intonations. Such sweet music to my ears.

The summer program has ended. Our conductor has moved on to live out her life’s dreams. We will miss her encouraging words and optimistic attitude. Good luck to you in your own special journey ZZ.

Where do we go from here? The goal will be to maintain the gains we have made. With a growth spurt K’s muscles will tighten as the bones lengthen. Through attending the conductive education program I now have a solid stretching program that I can follow. With dedication I am confident that K will be able to continue to straighten his legs and gain confidence with his standing skills. Looking toward the future, we need to get a program up and running that will offer all children with mobility issues the opportunity to meet their full potential. We will work towards raising funds for further Conductive Education sessions for K. We pray that a conductor will become available to us in short order.

Amazing is my word of the day. What's yours?

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Conductive Education - Little things mean a lot



I thought I would update everyone on the Conductive Education program that I have been taking K to this summer. If you don’t know what CE is take a look here.

Our commitment is for 5 hours a day, 5 days a week for 6 weeks. Prior to the start of the program I was excited at the promise of progress and dreading being cooped up and committed to this schedule for the summer. As it turns out, we are having a great time! Meeting other parents with similar thought processes and goals for their kids has been wonderful. So much of the time I feel isolated but now I have made some contacts and I hope we can maintain that after the program finishes.

Each day I am amazed at how hard these kids work. They are all troopers. Sure there are tears. Sure there is hollering. Sure there is resistance. But this is HARD work for these kids. Any muscle stretching and strengthening program is going to be hard if you are putting effort into it. These kids don’t get away with slacking. When given a task they are expected to complete it. You don’t give up just because it is hard. You don’t give up just because you are tired. You stop when the task is completed. It doesn’t have to be perfect, just completed. It’s a great work ethic to be teaching.

Now for the yummy stuff!

Before we started the 6 week intensive program the conductor approached me and said she had discussed K’s situation with some other conductors. The consensus was that what is holding K back from successfully standing and walking (his desire to be upright is very evident) is tight Hamstrings and Achilles and that we should spend this time really concentrating on stretching those muscles. So that is what we have been focusing on and we are seeing good results. K has now started to stretch his legs out without assistance while lying on his back. He is able to make a bridge independently on demand. (That really helps with diapering) He is imitating when we are singing songs and when a task is demonstrated to him. His focus has improved immensely. He is printing letters with minimal help and completing work sheets independently. He sat cross-legged today without support for the length of story time. He has learned to play catch with a ball with other children. He kicks the ball while seated on a stool. He can push himself from squat to stand with help for balance. He can pull himself along the length of the plinth with his arms. He can push himself down the length of the plinth with his arms. He can push himself up the length of the plinth with his feet. He can wiggle feathers out from between his toes. (when we were at the spring session he couldn’t even wiggle his toes) I’m sure that is not everything. The little things add up to big things. K knows the routine and if something is done out of order he is quick to point out the task that has been missed.

Today we used K’s new Swash brace for the first time. His sitting posture was greatly improved by the use of the Swash. His back was nice and straight, knees apart and it was much easier for him to keep his feet flat on the floor. Very nice to see. We have also ordered some custom knee braces. These should help with maintaining the improvement to the hamstrings and will also aid in standing and walking tasks. Right now K’s tone is so powerful that we can’t control his foot and leg position for standing with our hands so the braces should free us to work more effectively on those tasks. The goal at this point is standing skills and side stepping with support. I am excited to work on those goals.

I’ll be sure to update you when we get to the end of this. There are actually some physical benefits for the parents too. All of this crawling around really loosens up the old joints!

For more information about this particular program, contact james.forliti@purposesociety.org or view the website at www.purposesociety.org/conductive/conded.html

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To You, My Sisters

I would like to share this poem, written by Maureen K. Higgins.

I came across this poem in 2004, at a time when I feeling very alone and going through some battles with "the system". My hope is that you will find some comfort or inspiration in these words.



Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychology.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip to Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas
of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs.

We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

 

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Researchers pulling back the veil on adult autism

This article was printed in the July 20, 2008 Vancouver Sun newspaper. Sharon Kirkey, Canwest News Service

Was the young doctor autistic?

He didn't think so: "I don't walk on tippytoes or get hypnotized by Wheel of Fortune," he explained.

But he did get upset when people didn't say what they mean. He loved math. "And then there's this odd thing I do with my hands and my nose when I'm excited and I think nobody's looking," he once wrote in the Canadian Medical Association Journal.

He thinks he may be on "some distant end" of the autism spectrum. At the other end are people like the man who organized his wife's CDs by the composer's date of birth and fell asleep on the floor during social events; his wife thought he was eccentric.

Or the office clerk who beat up a woman on his way to the bus stop one morning for the simple reason she was in his way. He was obsessed with not walking on the cracks between the tiles on the sidewalk.

Autism in children has never been more in the news. But few are talking about the adults, experts say, and few therapists are available to treat the illnesses in adults just as more are seeking help.

The official criteria for diagnosing autism spectrum disorders apply to children. Some adults only recognize autism in themselves when their child is diagnosed.

On the high-functioning end of autism is Asperger's disorder, "and that's the group that's coming to people's attention," says Dr. Deborah Elliott, assistant professor of psychiatry in the division of developmental disabilities at Queen's University in Kingston, Ont.

Even Asperger's is listed under the category "usually first diagnosed in infancy, childhood or adolescence" in psychiatry's official guidebook, the Diagnostic and Statistical Manual of Mental Disorders, and it was only in 1994 that the syndrome was added.

Adults with Asperger's have normal or above normal intelligence, but their social skills are disastrous. They avoid eye contact, have difficulty forming relationships and can't pick up on normal social cues, signs and facial expressions.

They may be able to get an advanced degree, but once employed they can't interact with their co-workers in a normal way. There's no normal coffee chit-chat, Elliott explains. They sometimes ask embarrassing questions and easily lose their tempers.

"A disagreement with a co-worker or a boss, or someone looked at them wrong, or it was a cloudy day instead of sunny like the weather man said, or you gave them the wrong sandwich," says Karen Rodman, founder and director of Families of Adults Affected by Asperger's syndrome, Inc., or FAAAS. "There's no rhyme or reason. And the problem is with everyone else around them. It's never their fault."

Some are diagnosed with social anxiety disorder, bipolar or depression. "You treat the depression but then you're left with somebody who still is a bit odd and eccentric," Elliott says. "That may be the first time they actually come to somebody's attention. Yes, he's depressed, but the reason he's depressed is because he can't develop relationships. Even though we've treated his depression, he's still stuck with disability."

Far more men than women are affected. Asperger's and high-functioning autism has been described as the extreme of male thinking, says Dr. Rutger Jan van der Gaag, a professor of clinical psychiatry at Radboud University Nijmegen in The Netherlands. "Very much detail, very little empathy."

Famous people from Isaac Newton to Einstein exhibit Asperger-like traits. "When you think of the rigidity and scrutiny you need to accomplish some of the big scientific achievements and inventions, if you're distracted by the beauty of life outside the lab, you're never going to have the perseverance to do so," van der Gaag says.

Many adults with autism recognize something is wrong, Elliott says. "They know they're not 'getting it.' They're not getting cues from people, they know they're being marginalized, they're aware they're different." But they often don't come to the attention of mental health experts until they're reprimanded at work for making an inappropriate comment, or charged with harassing or stalking.

"You can help them understand that they have a syndrome that makes them different," Elliott says. "That somehow relieves them from feeling that they're doing something terribly wrong."

skirkey@canwest.com

I think this report states a very valid point. Many adults recognize they have symptoms of Asperger's after they receive a diagnosis for their child. Is that your experience? I know I see it in other family members very blatantly.
Do you think you or someone else in your family would receive a diagnosis if testing was sought? Does the awarness that you have about Asperger's affect your interaction with those people?

Feel free to leave a comment!

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Conductive Education on Canada's West Coast


Okay, okay, as much as I am embarrassed to admit this, I will. I used to be one of THOSE people. You know the kind that quickly looks away when they are uncomfortable with what they see. Or, the kind that tries not to stare but just can’t help it. Well, I am sitting on the other side of that fence now. My son has spastic quad cerebral palsy. What that means is that all four of his limbs are affected by tight muscle tone and muscle spasms. He uses a wheelchair as his method of ambulation at school and in the community. As his parent, I am driven by a desire to see that my son achieves the highest level of independence that is possible within the limits that his body puts upon him. He has come a very long way from the stiff “board” boy that we brought home from the hospital. I have come a long way in my understanding of what impact cerebral palsy would have on our lives.

I have spent countless hours researching on the internet for various therapies and programs that will help my son to achieve independence. My dream is for him to be capable of taking care of his personal hygiene and to be able to feed and dress himself. Maybe those aren’t high goals but I feel that these are the least that I want to see him capable of. Everything else is a bonus. We know that he is very intelligent (we discovered he had taught himself to read at the age of 4) he has an uncanny ability to problem solve (just put him into any device that has restraining aspects to it and watch how quickly he can find a way out of it) and his level of self-motivation is beyond any that I have ever seen. All these things about him help to keep me motivated. I am drawn by an irresistible force towards the top of a mountain that often feels far to steep to even attempt to climb. We are standing in the foothills right now.

When I was researching therapy programs for children with Cerebral Palsy I came across information about Conductive Education.   As I read through the website information about the philosophies and goals of the program my thoughts began to stir. Is there a program like this close enough for us to access?  There began my search. I came across a website called Little Leaps. This program was located in New Westminster, about a 20 minute drive from our home. I contacted the coordinator and was told that the program was on hold as there was no conductor available locally. I was so disappointed. That was about 3 years ago. This past winter I received an email telling me that it looked like there would be a conductor available to come for an extended time to get a program up and running. Would we be interested? I responded with a resounding YES! I was so excited! I had no idea how we would pay for this or what the time commitment would be but I know in my heart that the money always takes care of itself when something is "meant to be". And it did.

The name has been changed to Purpose Conductive Education Program and we have been attending sessions since March. The conductor has grown to know my son quite well and has set some reasonable short term goals and is very optimistic for advanced goals down the road. She says K needs to learn to control his muscles. He needs to learn to slow down his movements. We are working on some of the activities at home. K is making progress. As he learns new ways to move and improve his motor skills he will be capable of a higher level of independence. I know the mountain is high and the climb is steep but with perseverance and attention to details I know that the brass ring is within reach.


This is K preparing for an art activity at the Purpose Conductive Education Program (March 2008)

Check out the website and look at the summer program. Or set up some one-on-one sessions with the Conductor. Contact james.forliti@purposesociety.org to discuss accessing this program for your child. Visit James' blog for an enjoyable read of his experience with Conductive Education.

Do you have any experience with Conductive Ed? I would love to hear from you!

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The Next Generation


This year brings with it many exciting new experiences. Foremost is that I and some of my friends are becoming grandparents for the first time. I suppose I am in a bit of a unique position in that I have a daughter old enough to make me a grandparent and I have a child young enough to still be in primary elementary school.

When my daughter was born there were no home computers or internet. We got our first computer when my oldest son was about 18 months old. Even then, I was intimidated by the machine and afraid that if I so much as pushed the power button it would blow up and I would have no idea what to do next. Hmm…a bit like raising children I suppose. Well, obviously I got past that thinking…

When my youngest child was born at 26 weeks gestation I found I had an endless need to research everything I could about his situation. I researched the drugs they were giving him and the side effects that they had. I researched each condition that developed due to his premature entry into this world and what the possible impact would be on his development. The information that has been available to me while travelling this path with this child has been mind boggling at times. But, I am eternally grateful to have this at hand. I feel so much more empowered and capable as a parent.

That brings me to the point of this message.

My children will have at hand, right from the start of their parenting experience, all of the information that they may ever need in regards to rearing their children. We are all much better informed about a great many things. Of primary focus for me is the immunization issue. I am in full agreement with Jenny McCarthy from the standpoint that we need to be more particular about which immunizations we are giving our kids and that an altered schedule, a later start with the immunization schedule, is well worth considering. As parents we need to make our own decisions about what is best for our children but those decisions should be based on good information. Parents need to understand the pressures that are placed on the medical establishment to follow the medical ethics as prescribed by the governing bodies. Doctors are not permitted to encourage parents to “think for themselves” when it comes to medical treatment for their children. When K was born and in the NICU he turned 2 “months” old. He weighted under 3 pounds at the time. The pediatrician handling our case came to me and my husband and said, “Tomorrow your son will receive his immunizations”. I responded with “but he is too small still, I think we should wait until his corrected age of 2 months, he will have a larger body mass to handle the immunization”. The doctor told me that if we didn’t have the immunizations that he would no longer be able to treat our son. I said to him, “Well, I sure hope we don’t end up dealing with Autism down the road”. Of course the response from the doctor was that there was no evidence that immunizations are linked to Autism. What else was he permitted to say? Well, my son and the child that was in the next incubator received immunizations at the same time. Both have since been diagnosed with Autism. Is this coincidence? I think not.

To all of the new parents, I wish you Bon Voyage. You are embarking on an incredible journey, the delights of which await your discovery, regardless of the map you choose to follow.
 
Do you have an experience where a doctor bulldozed your parental rights? Leave a comment. We love to hear from you!

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Father's Day


As a parent of 2 children with Special Needs I rely heavily on the understanding and support of my spouse. Our children count on his tenacity when advocating in their best interest and that he also be the fun-loving Father role model that all children need. We each need to feel his love. To top it off, he goes to work everyday (yes, all seven of them) in order that I am available on a full time basis for my boys. These things create an incredible demand on his time and energy. Each day is met with determination and an incredible amount of joy and excitement. A hero in many ways!

I decided that I really wanted to write an entry honoring the Fathers in our children’s lives. In searching for appropriate material I came across a lovely poem titled “My Daddy, My Hero”. Written by Cheryl from the perspective of her daughter, I found this poem to express many of the same thoughts I have about the relationship that my children have with my husband. Happy Father’s Day!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



Before I was even a twinkle in your eye, God picked you to be my Daddy.
He fashioned my body with a reason and a purpose and He knew I needed you to help me through this life.
He knew I'd need your strong arms to carry me when I couldn't walk.
He knew I'd need your fun laugh to cheer me when I was sad.
He knew you'd sit with me for hours and cuddle when I felt sick.
He knew your adventurous spirit would make my life so fun and normal.
He knew you'd spend lots of time with me to make me feel special.
He knew I would thrive as you shared with me your love of the outdoors.
He knew Mommy needed a strong shoulder to cry on to support her through tough times.

I do know that Daddies get frustrated sometimes because they want to 'fix' things and make the bad times 'go away'—- That's just the way God made Daddies!
I know you would do anything to make my struggles disappear.
I also know that you will always be my biggest fan! You'll always be my hero!

We're a good team, you and me.
I'm teaching you about God and His eternal perspective.
You're teaching me to enjoy this beautiful life and our journey here on Earth.
We've both learned to be thankful for the little things in life.
You and Mommy don't take any of my accomplishments and milestones for granted.

I revel in the pride that shines from your adoring eyes.
I know that I can try anything if I set my mind to it— As long as you are behind me to cheer me on and catch me when I fall.

I see glimpses of my Heavenly Father in your eyes, the love, the pride, the pain and the unconditional acceptance.
I am whole and perfect in your eyes.
I am beautiful and charming in your eyes.
You don't care that I may not be just like all the other little girls.
That's why you love me so much!

One thing is for sure, I have you wrapped around my little finger and I won't ever let you go.
Thank you for loving me for who I am and for guiding me towards Heaven where someday I will run and jump and maybe even fly!
I can't wait for the day when I am holding your hand and God's hand and we are walking together into the sunrise of forever.

Love,

Cassidy Anne
(written by her mommy—Cheryl , March, 2001)
http://www.geocities.com/cassies_site/index.html

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Your IEP Action Plan

 As we come to the end of the school year our thoughts begin to focus on what the next year will bring. Many parents meet with the school based team to discuss the how successful the goals and accomodations in their child's IEP have been and what changes need to be implemented for the following school year.

I came across this article written by Joan Celebi. I think it is a really good reminder of the importance of taking care of ourselves during these stress-filled interactions with the professionals in our children's lives.

Do you have any special strategies that help you to prepare for an IEP meeting? Leave a comment or send me a message at contact@autismaspergersandmoreohmy.com . I love to hear from my readers!

Blessings for your journey,

Lori-ann

 
Your IEP Action Plan
 
by Joan Celebi
 
Who doesn't get nervous before an IEP meeting?  Even under the best of circumstances, when the teachers are wonderful and things are going smoothly, IEP meetings can cause anxiety and worry.  And if there's disagreement between you and the school about what services your child should receive, the weeks, days, and minutes before the meeting can be a time of absolute dread.
 

As you prepare for an IEP meeting, your focus is on getting the right services for your son or daughter - so they can receive the best education possible.  But there's a crucial piece that's often overlooked: you!  Taking care of yourself and putting some smart strategies into place before, during, and after an IEP meeting is essential.  Here's my step-by-step IEP Action Plan for doing just that, so you'll be better able to focus on the meeting, and on the education you want for your child.

 
Your IEP Action Plan
 
1. Long before your IEP meeting, take some time to step back and think: do you need help with this?  The IEP process can be complicated.  You don't have to do it all by yourself.  Consider hiring a special education advocate.  Advocates can take on many roles, from simply meeting with you and helping you organize your thoughts, to accompanying you to the IEP meeting. 
 
2. In the months and weeks before your meeting, make sure your records and documents are all in order.  Want to do this the easy way?  Buy the new "My IEP Toolkit" at organized4kids.com.  I just bought one and I can't wait until it arrives!  It's a large, high-quality 3-ring binder with sections for every type of document you need to keep - completely organized and all in one place.  It's got how-to's and tips galore, and it makes your IEP record-keeping effortless. 
 
3. Keep a running list of all your questions and anything you want to discuss at the meeting.  Put it in your binder.
 
4. About a month in advance, check in with all the teachers and professionals who work with your child.  Find out what concerns they may have.  You may be surprised to find out something you weren't aware of.  This serves two purposes:  first, you can address these concerns in your Parent Statement; and second, you don't want any surprises at the IEP meeting!
 
5. Three or four weeks before your meeting, start writing your Parent Statement.  You will want plenty of time to re-read it and revise it before the big day.  Make copies of your Parent Statement for everyone who will be attending — and put the copies in your binder.
 
6. A few days in advance, figure out what you want to wear.  Make sure you've got groceries in the house, and enough laundry done.  Do anything ahead that will make the morning of your IEP meeting go smoothly. 
 
7. Decide in advance what you want waiting for you when you get home that day.  Have your favorite CD ready to play, a favorite food prepared, a set of comfy clothes to change into ... you get the idea!
 
8. Also in advance, block off a little bit of down time right after the meeting for you.  When you give yourself some time to recover, the rest of your day will go much more smoothly.
 
9. You may also want to plan ahead to do something fun, relaxing, or rejuvenating within a day or two of the meeting.  You'll have something to look forward to - and an antidote to that drained, overwhelmed feeling that sometimes comes along during IEP time. 
 
10.  And while you're looking at your calendar, set aside some time during the days following the meeting in case you need to follow up on ideas and suggestions from the IEP team.  The time it takes to make phone calls, send emails, and do research can really add up!
 
11. Eat a good dinner and go to bed early the night before, and eat a good breakfast the morning of the meeting.
 
12. In the hours before the meeting, take several "time outs" to close your eyes and breathe deeply.
 
13. Bring water to the meeting, and sip every few minutes.
 
14. During the meeting, ask all the questions you want, and don't be afraid to ask people to repeat or rephrase.  It can be hard to take it all in at once.  Be sure the meeting progresses at a pace you're comfortable with.  Jot down notes during the discussion for anything you want to clarify or follow up on. 
 
15. Immediately after the meeting, look over your notes, fill in any incomplete information, and add anything you know you're going to want to remember.  Put the notes in your binder, then put it away for at least a few hours.  Go for a walk, even if it's just for a few minutes.
 
16. Ideally, make dinner ahead, so you can give yourself a break that evening — less kitchen work and more time to sit and eat with your children — and enjoy them just the way they are.


~ ~ * ~ ~

Joan Celebi is a life coach and proud mother of two children, one of whom has special needs. Through teleseminars, individual coaching, and her free monthly newsletter, she brings the best strategies of life coaching to parents of children with special needs nationwide —helping them create lives of balance, harmony, and joy.  Learn more at www.SpecialNeedsParentCoach.com

Did you like this article?  Feel free to forward it around and/or print it out to share with friends, your parent group, etc.  You can even reprint it in your organization's newsletter, use it as a handout, put it in a resource notebook... use it however you like!  All I ask is that you keep the entire article intact, including my name and contact information. 

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If Dr. Seuss had a Special Child


Dear Mom-I-am, dear Mom-I-am, we have a problem, Mom-I-am.
Your son won't do what he must do. He drives me crazy, yes, it's true!
He will stall and squirm and hum, and leave all of his work undone.
He dreams and will not pay attention, have you considered medication?

With other kids he does not play, he is alone much of the day.
Something does not seem quite right, because I know he must be bright.
He seems to learn, despite the rest, but the work is not his best.
He is disruptive, yes it's true. He just won't do what he must do!

Yes, teacher I can really see, how frustrating all this must be.
A child who does not meet the norm, a child whose mold won't fit the form.
I've had him tested on WICS-III, by your approved test agency.
He scores much higher than the mean, there's more to this than can be seen.

So help us, help us find the way, to teach this child best if we may.
He is not like the rest you see, he acts and thinks far differently.
We need another way to teach him, another way to finally reach him.
Not the normal thing you do, but something altogether new!

What! Something new - go bar the door! We've not done it that way before!
If we do this thing for you, then all the rest will want it too!
Change our ways, that can't be done. Same for all, not changed for some.
All children are gifted, yes it's true! Just MAKE him do what he must do!

Please, please, teacher, hear me through. The laws say you must help us, too.
His needs are different than the rest, we CAN help him to do his best.
We can make this easy too, it will not be more work for you.
This can work out, you will see. Try it, try it, please, for me?

All right, all right, if I must. I still maintain this is not just.
But first there is red tape you see, test and checks and IEP.
And after weeks and months of proving, finally we can begin moving.
Then I'll try it and we'll see, if this method is the key.

Hey, I see something, yes I do! We have found something he will do!
No more fiddle, squirm and hum, no more worksheets left undone.
He's zipping through, he's learning fast, he's doing his best work at last.
Why did I put up a fight? I guess dear Mom, that you were right.

This poem was written by Mary Beth Northrup and is published here with her permission.

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There goes my heart


Cerebral Palsy
 is a non-progressive condition caused from damage to certain areas of the brain usually occurring before or shortly after birth.

My son has Cerebral Palsy. It affects all four of his limbs, his hands, his trunk, his neck, his mouth. In fact, I don't think there is much of him that is not affected to some degree. At least on the parts of him that we can see. The parts we can't see, we have to guess but the reality is that if it has a muscle that impacts the function there no doubt is some effect on the muscle from the CP.

My son is my HERO. He is my heart, out there for the entire world to see and feel and interact with. Every day, in every activity that he attempts, he struggles for control of the movement of his body through space. Yes, he has equipment that helps him to sit in proper alignment, stand in proper alignment, and move through his environment in a safe manner. He has many people that work with him to maintain his safety and oversee his ability to function with as much success as he is capable of. I appreciate the efforts of all of these people. He will be successful. He will have independence. There goes my heart...

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