If Boo-Boos were Blessings

At two weeks into June, Noah and Ryan's arms and legs look as if they've scaled Mt. Kilimanjaro in shorts. They no sooner leave the house with a clean wound and a band-aid when they rush back in with a new injury to be addressed. (Not to mention the previous band-aid lost contact with the skin and the wound and sticky skin around are covered in dirt.) So it goes until September when long pants are appropriate again and the battle wounds of summer begin to fade.

This all started when they were little, we all know the scenario - great fun ensues until the moment when the laughter stops, the mouth is wide open screaming so loud there is no sound coming out. Ryan was the worst, facial stitches at 17 months because of his insatiable desire to climb. Noah's wounds were always sports related, you know, the the usual  - two-hand touch football somehow ends up with Ryan knocking out a tooth, on Noah's head which is bleeding. When I hear the door open and the panicky "Mom, I need help!" I now just calmly turn the corner with my eyes closed and ask "Do you have all your teeth and both eyes?" If the answer is yes, I begin the process of assessing wound triage. Thank the Lord, the answer is usually yes - except for that one time.

Even though Lucas has always been active I've never experienced this with him in the past. Last summer he was active but only in his comfort zone. That was the same time we decided to get serious about things like mitochondrial efficiency, clean diet and metabolic balance. With each change we made Lucas's good energy became great, I saw the advent of risk taking and even put on the first band-aid in late August. Truthfully, the band-aid was unnecessary, but I had a huge supply of Thomas the Tank engine and Blue's Clue's band-aids and couldn't wait to put one on.

Today, we came in from playing outside and I have just spend 20 minutes cleaning out the new boo-boos and re-cleaning the old. I find myself secretly worrying about scarring and what in the world Lucas's legs and elbows will look like by September. I think about how he got hurt and realized he was running so fast and laughing that he tried to jump up the curb, and missed. I think about all the times I sat here patching up the beautiful skin of my children and how Lucas is no different. Same injuries, same process, same blood.

It amazes me how even the most mundane things as skinned knees are given a new life because of perceptions. Patching up my kids might be very low on my list of things I like to do, but at least they are able and healthy enough to go out and get them. Next time we're running, I hope Lucas has the idea to try and jump that curb again, I'll gladly clean out more wounds looking forward to the day I won't have to.

Every time I patch up one of my boys I think "If Boo-Boos were Blessings..." Today I realized they are.

Another Day, Another Publisher

Yet another publisher rejected my manuscript. It is so very disappointing. My book is designed to be a very easy read giving multiple ideas for a real plan, the very things we talk about here, but very scaled back for the eyes of a brand new mom or expectant mom who is terrified and in shock.

Many main stream publishers rejected it saying that it was better suited to a special needs publisher. So I went that route. The rejection from the most recent special needs publisher said that the majority of the information in my book was described at length in 5 different books they currently publish. I can tell you each book is approximately 200 pages minimum, and one of them was the very book I was given as a new mom that lit the fire to put out a book worthy of being the first thing read by new moms.

Go back to the day you heard those words for the first time. What did you want to get your hands on? Were you about to track down 5 bulky books on gross motor skills worthy of a physical therapist's text book, a book filled with every conceivable thing that could be wrong with your baby for the rest of his life (including a chapter on special needs trusts and finding the right group home), a 250 page book on the importance of play, on and on and on?

Maybe I've missed the mark. Maybe I am the only one who sees the value in a doctor saying, "Your Baby has Down Syndrome." Go home, take a breath and read this.  When she does, she finds a book written by a therapist and a mom who balances the unique understanding of that moment of time with the  basic knowledge she needs to get her feet under her.

I'll not give up on that, I'll find more publishers.

Be Careful What you Wish

So I decided I was going to sign Lucas up for the Town Soccer Program. This was not without it's challenges, Lucas's age being a biggie. He was supposed to be 4 by July 1st. I really didn't want to wait until next year before introducing this concept, so I called the director to see how lenient he would be with the birthday and he said that he would let Lucas in as long as he was 4 by July 31st. (OK, so what's 30 days? It really can't even be called a lie.) So I signed him up.

The next obstacle was the consent form. I got to the part that said "Does this child have any health issues we should be made aware of?" Well, no he doesn't. (I've had all his neck scans done, he's fine to play) The next question was an open ended one, "Is there anything else we need to know about your child?" I thought about that one for a while and I thought about writing Trisomy 21, they wouldn't know what that was probably anyway. I certainly wouldn't write "Down Syndrome" because that would be akin to writing "My child is prone to cartwheeling on the field." (Which sadly Ryan was). Maybe I should write, "First team sport experience." But then I thought how much "team" play is there really going to be with a bunch of 4 year olds. So I simply wrote "None."

Thrilled to the bone of my craftiness, I picked up his ultra-cute uniform (If you flip up the bottom of the shirt it says "I just played, I'm thirsty." You can go to Tim Horton's and get a free drink. Of course Lucas doesn't drink anything Tim Horton's offers, so he flips it for me and I give him a nice coconut milk and blueberry frosty!) and headed home.

The first three weeks of soccer, Lucas went with me to watch Noah and Ryan Play, but on Friday soccer was cancelled three weeks in a row for Lucas due to thunder and lightning. So for three weeks, the kid probably thought I was a liar that he was ever going to play and not only that, had to watch his brothers play from 6-9 every Tuesday and Thursday.

Certainly never one to waste time I used those three hours twice a week for three weeks, for Lucas to run. We ran up and down the hill, we ran between Noah and Ryan's fields, we ran across the parking lot to the playground, we even got a ball and chased it around.

Finally, the day came. Last Friday was the first night of soccer. Expecting to be less excited with a third child than a first, I was surprised to have the "game time" nerves of Game 7 of the Stanley Cup championships, the whole family crammed into the van and headed to the fields.

There was a swarm of four year olds in the same uniform and two very lovely young girls from the town rec. league at the helm. It was finally time. I heard them gather the children (and regather, and gather some more) and give the following directions: "I want you all to sit down and I'm going to show you what toe-touches are." Perhaps this was just a bit too anticlimactic for Lucas, because he took off running to our hill. I chased him down, brought him back, they were onto "ping pongs." Lucas took off for the playground. I chased him down and dragged him back (Where the hell was my husband anyway?) Now dribbling...off to the hill...chase him down...drag him back. Finally, scrimmage time. This would be better, Lucas plays soccer at home with the boys and the kids in the neighborhood all the time. They put a little orange pinnie on him that looked like an off-the shoulder evening gown and began the game. Lucas bolted for the net and crouched down in the goalie position. (Wonder where he got that from.) The young lady came over and told him to go play, there were no goalies in the U4 league. Unable to stay in the net he took off for the hill.

Can't wait for Friday.

To My USA Friends

This is an important piece of legislation. I haven't heard about it anywhere but on the Mercola site...will do some digging.

http://articles.mercola.com/sites/articles/archive/2011/05/24/this-important-new-bill-could-transform-health-care-if-it-passes--but-i-need-your-help.aspx

A Little Video of What We've Been Up To!

I decided to get a little video of Lucas. This is our time to go running so he has a little extra energy than usual, but it still is a nice little clip of what we've been learning. This of course goes against the cardinal rule of teaching very young children - NEVER test, always give the information joyously without asking for it in return, but I think there is some benefit from Lucas seeing what he knows...and of course he will want to watch this over and over again!

Enjoy, and if you have similar videos of giftedness (my new label for what our kids can do!) please share. I am always meeting more parents in our growing revolution and a new acquaintance was asked if she was afraid that her child wouldn't fit in when he went to kindergarten. She politely told the inquisitor that she would have to make sure the school knew how to handle children that were so far ahead of their peers.

That gave me a great idea. We are at the point where I make homemade reading books for Lucas and a small community of parents doing the same all share books because we need about 7 a week. In my endless search for topics, I pulled out Noah's work from third grade and made beautiful books on life cycles, health, etc. Why not teach the third grade curriculum to the school he will be going? Of course Lucas wont actually be in third grade for 5 more years, I call that "ahead."
Click on the link below:

What Lucas has been up to!

2:16 video clip from Janet Doman, Director of the Institutes

http://www.youtube.com/watch?v=eRu0HQ5kbk0&feature=youtu.be

Having sat in that exact auditorium being inspired beyond belief, I can tell you that I saw incredibly hurt children, incredibly young reading books that I would probably struggle with. They used communication boards to talk with us about the books, but I can't quite get the vision of a severely involved 5 year old talking with a parent from Tokyo about the complexities of plot in Shogun.

Think these children will have a problem with complex thought? Janet's right, we only give what we THINK our children can understand. We THINK they are naive because their speech may be limited to short phrases. We Think they need endless mindnumbing repetition because that is what specialists have told us for years. Lucas can say many words that he can read like "Gorbachev". Teaching a sensory process such as reading through the visual pathway combined with the auditory sensory input of hearing the words, starting at infancy, is the best way to get the motor output of speech.

"Higher Education?"

I had to print the following article in full. Expectations of what our children
are capable of aside, parts of the article are infuriating. Worst of all, they are
touting this to the mass public as a revolutionary way to treat people with
"Down Syndrome." As if the public at large doesn't already think our kids
are unable. The very specialists who are responsible give clues to the real
problem throughout the text. Here are some highlights:

1. “They are adults now,” said Sharon Sanders, the program’s founder and
 former director. “They were not when they came to me. We treat them
like adults. We so often treat them like children, and they grow. All
students do that.” 

She is talking about 20 year old students who theoretically graduated
 from High school, they weren't adults when they came to her?  What in
 the world did they do for the past 12 years? What in the world could they
have done if they were treated as equals and given the opportunity to
succeed in grammar, elementary, middle, Jr. and Sr. High school? Who
would they be if they were kept out of "special" environments and were
surrounded by specialists who were actually interested in giving mom
and dad a real action plan instead of the blasted laundry list of what
their child will never do?

2. "Without opportunities to keep learning, the prospects for independent
living are poor for these adults, said Donald Bailey, executive director
for College Transition Connection. His non-profit organization coordinates
 state funding to five colleges, including Clemson, that offer higher
education for the intellectually disabled".

The process of teaching a child to be independent begins at age 21?
In a "college course?" Of course when children are shuffled from special
environment to special environment they are not EXPECTED to achieve
 independence. Are we really going to play along and claim this is a
"College Opportunity?" No wonder we are looked at as freaks when
 we explain our intention for our children to graduate with a real degree
 and go to a real college with real expectations they will succeed. 

3. "With 92 percent of this population unemployed, the benefits to the
state are obvious, Bailey said. A similar program at Tate College in
California has reported that 88 percent of its graduates over the past
decade are employed. This will ultimately save the state millions of
dollars,” Bailey said.

Why don't they try to save money by actually teaching the children
in the school systems before they graduate. I think they've done studies
where primates were taught how to complete a task and then were able
 to generalize it in different environments. Apparently our kids aren't
even that bright if 92% of them aren't employable anywhere. Do we
need more proof that the current mindset is wrong?

I can't even comment on the following quotes:

“Families didn’t plan on their intellectually disabled son or daughter
 going to college,” Bailey said. 

AND...

 "Usually kids who are learning disabled come from low-income situations.”

And the saddest statement of all:

“As a parent, we found out she can do more than we expected,” she said.

At the end of this article is a section for comments. I need to compose
myself before I comment. Rest assured, I will comment.

Here is the unabridged version. At the end is an article I choose to believe is a more accurate statement of what our kids can do, just for contrast...and because I couldn't leave you with the bad taste in your mouth from the first one:

CLEMSON UNIVERSITY — Mary Alice Shartle, 24, dreams about
 getting a job someday working with small children.

At the same time, Shartle is clear about the hurdles she faces.

“I have Down syndrome,” she said. “I have trouble thinking sometimes.”

Shartle learned how to speak frankly about her disability during a two-year
 life skills program at Clemson University. She built on her strengths a
nd can articulate her challenges — both key to a prospective employer,
said the program’s director, James Collins.

This spring, Shartle and five other intellectually disabled young adults
were among ClemsonLIFE’s first class of six graduates.

“They are adults now,” said Sharon Sanders, the program’s founder and
 former director. “They were not when they came to me. We treat them
like adults. We so often treat them like children, and they grow. All
students do that.”

ClemsonLIFE is among five college programs in South Carolina for
intellectually disabled adults seeking higher education. The state’s public
schools allows these students to remain in high school until they are 21,
but there were no further education options for them until three years ago,
when the first such program started at the University of South Carolina.

Without opportunities to keep learning, the prospects for independent
living are poor for these adults, said Donald Bailey, executive director for
College Transition Connection. His non-profit organization coordinates
state funding to five colleges, including Clemson, that offer higher education
for the intellectually disabled.

South Carolina has about 2,000 intellectually disabled adults who would
 be eligible.

With 92 percent of this population unemployed, the benefits to the state
are obvious, Bailey said. A similar program at Tate College in California
has reported that 88 percent of its graduates over the past decade are employed.

“This will ultimately save the state millions of dollars,” Bailey said.

Shartle not only forged friendships with other disabled adults, but also
with mainstream Clemson students. She also tried a range of jobs she
 might someday take on full time.

Her parents live in Greenville. After moving away from home, Shartle
learned online banking, sharing chores with roommates, traveling by
bus on her own, shopping for groceries and cooking her own meals.
She attended Clemson football games and recitals at the Brooks Center.

“I like to cook healthy foods,” Shartle said. “Salmon is my favorite.”

Collins said Shartle shared a normal college experience with other
people her age.

Shartle’s mother, Janice Shartle, said her daughter has always wanted
to learn.

“As a parent, we found out she can do more than we expected,” she said.

ClemsonLIFE has grown from six students to nearly 20 this coming fall
and has acquired dedicated office and classroom space in Godfrey Hall.
Created as a two-year program, ClemsonLIFE will add a third-year program
in the fall for four students who want to get work internships and try
living off campus without a mentor.

Cally Vollmer of Atlanta will be one of those students. She has a
 summertime job selling jewelry at a store in Delaware, and her parents
 had to discourage her from taking on too many hours.

“When I first got there, I was completely nervous,” Vollmer said of
ClemsonLIFE. “I didn’t know what I was going to do. I didn’t expect
to be with so many awesome kids.”

She and her classmates interacted with more than 130 Clemson student
volunteers.

Clemson has drawn several out-of-state students because of the relative
rarity of the programs.

“These kids desperately need them,” said Saralynn Vollmer, Cally’s
mom. “We couldn’t have made it any better than it was.”

This past year, 30 students were enrolled in the state’s five new programs,
but Bailey predicts that number will quickly grow closer to 100 over
the next year.

The College of Charleston and Clemson each had 20 applicants for the
fall, he said. Two challenges still facing families are affordability —
tuition is comparable to full tuition and board for a regular university
— and awareness.

“Families didn’t plan on their intellectually disabled son or daughter
going to college,” Bailey said. “Then there are families who flat can’t
 afford it.”

This past year federal Pell grants became available to such programs for
 the first time, and South Carolina students can get some tuition assistance
 though the state’s vocational rehabilitation program. Lottery funds that
mainstream college students can access for college tuition, however, is not
 available to these students.

“We are very, very, very lucky,” Saralynn Vollmer said. “We’ve done well.
Usually kids who are learning disabled come from low-income situations.”

Bailey said South Carolina is setting a national standard for its public support
 of the programs. The state Legislature appropriated about $1 million over the
past five years to launch programs at Clemson, USC, College of Charleston,
Winthrop and Coastal Carolina.

“The Legislature has stepped up; educators have stepped up,” Bailey said.
“And they have made a good name for themselves nationally.”

Bailey said he got involved because he wanted in-state higher education options
for his own intellectually disabled son, also named Donald. He has a form of
high-functioning autism and was unable to finish high school.

Earlier this month, Donald, 23, walked the stage at the University of South
 Carolina as the first graduate of that school’s LIFE program. Today, he has a
 job at a county park near his parent’s home in Mount Pleasant.

“He drives himself back and forth,” Bailey said. “He lives on his own.
He’s independent.”

___________________________________________________________________

We all have our doubts creep in, but I would like to share with you one other article.
 If we dismiss the fear the path becomes clear.

From the moment she was born, Karen Gaffney began an incredible journey that
continues today. She is the President of a non-profit organization dedicated to
championing the journey to full inclusion in families, schools, the workplace and
the community for people with developmental disabilities. She is doing this by
creating awareness and calling attention to the tremendous capabilities of people
with disabilities.
Karen graduated from St. Mary’s Academy in Portland, Oregon and earned a
two-year Associates of Science degree from Portland Community College. She
successfully swam the English Channel as part of a six-person relay team. And
 two years ago, she accomplished her biggest swimming Challenge yet…she
swam 9-miles across Lake Tahoe in 59-degree water to raise money for the
National Down Syndrome Congress and to show the world that people with
Down Syndrome are more alike, rather than different, from everyone else. Karen
 travels the country speaking to a wide range of audiences about overcoming
limitations and about what can be accomplished with positive expectations.
Karen tackles any challenge she faces with determination and commitment,
knowing she has limits, but not allowing them to limit her drive to succeed.
Oh, and by the way…. Karen Gaffney has Down syndrome.