School Days

School days, school days, dear old golden rule days...
Yes, it's that time again, gentle reader. My baby birds have flown the coop (except the one I am homeschooling this year), and I hope you are all ready - not to relax or breath a sigh of relief -
P-L-E-A-S-E!!! This is the moment our vigilance begins.

We begin by walking on eggshells and projecting cheery introductions to the teachers we don't know as we help our special needs children acclimate to their new surroundings. If that means we take our children to school the day before classes begin to spend two hours trying the lock on their locker, well, my God, we sit there and encourage them till we're blue in the face because we know the stress they will feel when the day of reckoning arrives.

If we walk through their schedule on that pre-class day, so that they don't get "lost" amidst the multitudes of junior high kids shouting and running and laughing in the hallways when the day of reckoning comes, well, my God, we do it because we know the time investment is an insurance policy. Maybe, if we pay now for our child's tears and apprehensions, the day of reckoning will go more smoothly.

We walk to the cafeteria together and meet the lunch ladies who are opening the kitchen in anticipation of the day of reckoning. They shake our child's hand and show him how to enter his ID number in the little machine. They tell him that he has to make choices between the salad bar and the regular line or the special diet line which is fine to choose even if he isn't on a special diet.

Oh my God, the day of reckoning approaches ... don't ask my child which meal he wants. What he hungers for is acceptance. Just treat him the way you'd want to be treated. You know, the golden rule.

Time to Make a Call (click here)

There's some action in D.C. concerning modifications to the existing Americans with Disabilities Law. The proposed bill will be on the senate floor in September. The modifications bring the ADA intentions more in line with the original coverage guidelines. To find out more check
http://www.accessiblesociety.org/topics/ada/misunderstood.htm
or
http://www.agbell.org/DesktopDefault.aspx

Clicking on the title will take you to a list of senators. Find yours and get involved today!

Let's make this a better world and easier for our children!

Driving King (rhymes with Dancing Queen!)

Well, my 16 year old is driving all by his lonesome! It sure is nice during these every-day-for-two-weeks pre-school band practices. For those of you new to the site, my son has Asperger Syndrome although you would be hard pressed to identify him at this point (now, 10 years ago it was a different story altogether!).

His ability to hyperfocus has proven to be beneficial in his driving skills as he pays attention all the time. He is a rules-follower and doesn't know it's an option to disobey, so, for now, I know he won't turn on the radio or answer his cell phone when he is driving but will wait till he pulls over or reaches his destination.

And the fact that he is driving his own car certainly bolsters his image among his peers.

Just watch out if you're driving around us...

Music for the Masses

Gentle readers, we have always known music reaches across borders of cultures and languages. There is a wonderful music program which started in Venezuela and has received worldwide acclaim. It is called El Sistema. The Great Gustavo Dudamel,who was born into poverty and hired, at 26, to lead the Los Angeles Orchestra, is a product of that program. He is determined to spread that love of music to children in the U.S.

While I admire the profound impact of music in these children's lives, it is the music for the deaf and impaired children which rivetted my attention.

My own deaf daughter (she has a cochlear implant)loves music, is in her third year singing in the school choir and writes her own songs. I remember seeing all the deaf children at her former schol in St. Louis (St. Joseph Institute for the Deaf) with ear buds, plugged in like other kids.

Enjoy this and share the music!!!

See the Video Bar on the left!

Yet, She Sings

But, and this is a BIG but, my deaf daughter loves to sing! The incoming eighth grader has sung the last two years in her school choir. Bless her heart, she can't carry a tune, but she is determined and sincere, and so proud she is singing with everybody else.

She is into writing songs now. In fact, it's become a sort of journaling for her. She has written half a dozen songs, mostly about missing a friend or looking for a friend... this is so wonderfully therpautic for her. She's playing with language, she's expressing herself, and the good thing is, she is overcoming her inhibitions about performing alone and begs her grandmother or her dad or me to listen to her. It's so inspiring!

May you be inspired today!

More on Teachers

Sometimes the biggest bullies at school are the teachers, and that's a sad fact. Out of seven teachers last year, my son had three awesome teachers and the rest? Well, they were overwhelmed.

His only modification in his 504 is that he is allowed extra time to complete assignments and tests because when he is in the middle of having tics he can't hear directions or attend to a task.

When teachers are aware of the situation and pretty much force him to beg for that time, that's bullying. My son was calling me from school, in tears, wanting me to come and pick him up. That's pretty heart-wrenching for any mom. He was 13 years old at the time, so I think that made it more unusual.

Just a word to you moms of special needs kids out there: Trust your gut and stand by your children. School is a struggle every day for our children, even if they are bright. Consider home schooling - just another option.

Tip: When you are new to this, and you are faced with attending IEP meetings, invite friends and family who know and love your child. They can provide valuable insight at a time when your nerves are shot and table talk turns to unfamiliar territory.

Child With Tourette's

I haven't talked much about my son who has Tourette's. Unlike the movie, Rain Man, his tics do not emanate from the mouth (except he does talk negatively and angrily to himself such as I suck, I'm a loser, I hate my life). Depression is a real factor.

Rather, his tics involve his body. I told you that, as a baby, he was a head banger in the crib. As a toddler, he banged his head against the seat of the car or against the wall if he was sitting on the floor. During those early years, his eyes became part of the sequence. They would roll back, in unision. It was very unnerving.

First grade bought about a new addition. The tics would start with the head and eyes but would then include the whole shoulder dipping with the head and started to include the hip. It was pretty scary to watch. His teacher and I were afraid he was going to have a blown out seizure.

It was hard trying to evaluate this without disturbing my son who was already painfully aware of how distracting he was. Combine that with the fact that he is really shy.

He started taking Risperdal and has been taking it for over six years. This past year (7th grade), we had to increase the dosage for the umpteenth time to help assuage the tics which were aggravated by he teasing he received in the school setting. He was called "Tic Boy" and other unsavory terms and asked constantly what was wrong with him.

Gentle reader, the worst part of the ill behavior wasn't the reaction of his fellow students but the reaction of some of his overworked and overwhelmed teachers.

More on that in tomorrow's blog. Take care of yourself out there - it's a wild world.