First Day of School Worries (Revisited)

On this First-Day-of-School Eve, my three kindergartners to-be have been very excited.  At dinner we asked them to tell us why they are excited.  Both Mark and Luke explained because they will get money.  After a few moments of confusion, we realized what they were saying.  Both of them thought that they would get money for perfect attendance like during Summer school!  Needless to say, we had to burst that bubble as we couldn't let them think the school would pay them on Friday!  After the bad news, the boys are still excited for the bus ride in the morning, but they are much less excited about actually going to school.

As I was sitting at my desk tonight and thinking of all my worries for my kindergartners, I could not help but remember when Vanessa and David started kindergarten.  I had so many worries.  However, on that day, a misunderstanding lessened my worries.  I found this story that I had written about their first day.  I thought that you might enjoy reading it too.

In May of 2009, I was dreading what was ahead for David and Vanessa.  I knew my own early experiences in school and I was worried.

For the past year, I had stayed at home with the kids after their adoptions. We had worked on pre-school skills, life skills and English skills to get them ready for kindergarten.  However, that year flew by quickly and it was soon going to be time to go to traditional school in August.  I was very reluctant, but I knew this was a step that they needed to take. 

Kindergarten would be a big step with all new adventures, new skills, new friends and new discoveries.  However, it was the new discoveries that worried me and to be honest, even scared me.  I can remember my first year of school, and while it was not a bad year, I learned some tough lessons that year.   Lessons that I still sometimes wish were not true.  I cringed at the thought of David and Vanessa learning similar truths about their world.

In the 1970’s, I lived an ideal life with my parents on a small farm.  My grandparents lived beside us and our community and church were small.  Due to my being born with a disability, I had been to see the “Big City” many times and frequently spent weeks at the Children’s Hospital with kids from all over the world.  School would prove to be an intrusion into my ideal life.  From my very first day at school, I started to learn tough lessons.  No one looked like me.   No one was taught like me, and ultimately I learned that not everyone wanted me in their school.  Unlike the hospital, with kids with all types of disabilities and unlike my home, with my father who was a disabled veteran and our neighbor with a wooden leg, at school I was the only one with an obvious disability and at first I was a curiosity.  Eventually, my classmates became bored with being entertained by my every move and they mostly accepted me as a playmate.  Recess became the best part of my day because I mixed freely with my new friends.  In the classroom, I sat in the back at a table and colored.  I could catch bits and pieces of what the others were learning and I was occasionally given a book like theirs to look at while they did their lesson. I learned the words for kids like me.  I disliked the word “retard” the most.  Some teachers didn’t think I could be taught and I learned that some did not want to waste time with me.  Even the principal doubted aloud in my presence if I belonged in their school.

My early experiences were the solid foundation of my fears for David and Vanessa.  Haitian by birth and now living in rural America, they enjoyed a small community of family and friends.  They had already made many discoveries, just coming to join our family.  Starting in the airport and continuing at church, they found out that few black people spoke Creole, even the darkest skinned people spoke English.  To add confusion, a white woman with light hair spoke Creole to them because she had lived in Haiti.  David knew that he looked different than me.  As he colored pictures of moms and kids, moms were orange and kids were brown.  However, what concerned me the most is that like me, neither David nor Vanessa knew that their community was not like their home and church. 

To try to ease the transition to go school, I made arrangements for David and Vanessa to go to pre-kindergarten, two Vacation Bible Schools and a day camp.  When the first day of Summer school arrived, David and Vanessa were so excited to get to go play with lots of kids.  I drove the kids to school that morning, and I got Vanessa to her class first.  Due to her disabilities, she had already met her teacher and toured as part of the process of getting the school ready for her so she separated from me quickly and was ready to start her day with the help of a classroom aid.  David and I went more slowly to his classroom, pointing out where the cafeteria and restrooms were located and finally stopping to take a picture of him outside the classroom. 

We entered the room and we were greeted by an experienced and prepared teacher who had activities already going at the tables.  I took David to the seat for him, and he immediately dove into playing with the building blocks at his table.  I lingered and took a couple more pictures as he started to talk to the boy next to him.  I was pleased to see that the boy was a minority, and based on a brief exchange with his mom as she left, I knew they were from Guatemala.  I was pleased that David would not be the only minority student!  David had told me bye, and I was across the room when I heard the little boy ask in a suspicious tone, “Who was that?”  I stepped behind a cabinet out of view. David said, “My mom.”  The boy said, “That’s not your mom.  She’s white.”  I sucked in my breath and waited to hear David’s response.  David said insistently, ”She is my mom.”  The boy said, “Not your real mom.”  I was about to step back around the cabinet, when the teacher interrupted the boys with a new activity.

That afternoon I went to get David from school.  The little boy and David saw me waiting in the hall.  I could hear enough to know that they had resumed their previous conversation.  I stepped closer to the door as the boy was asking David questions again.  David replied, “There are white moms too”.   Then the little boy asked, “How do you get to school?”  David seemed annoyed as he answered, “I told you; in a car.”  The boy inquired, “But who drove the car?” David seeming more annoyed, ”My mom!” The boy confused, “Your real mom?” David pointing to me in the hall, “Yes.”  The boy then said, “She can't drive.”  David who was looking completely annoyed now; responded, “White moms can drive too!”  As luck would have it, the bell rang and David came running to me.  I figured I’d explain the little boy’s concern about my disability and driving later.

On the way home, David told me all about his day including about the boy who kept asking him about his mom all day.  David explained,” He has a brown mom.  He doesn’t know about white moms.”  He exclaimed, “He didn’t even know that white moms can drive!” 

I decided that David understood the little boy just fine so I never explained the boy’s concerns.  However, that afternoon I felt more confident that David and I would do just fine handling the tough realities of kindergarten…one misunderstanding at a time.

Jon's Big Day

If you are a mom or a dad, you have probably had something that you knew your kid could do or learn to do, but others may have had doubts and maybe even your child had doubts.  You may have prayed with and for that child, but you had not doubts.  You prayed for God to strengthen them or maybe to give you the right words of encouragement, BUT you knew your kid COULD do it, make it or achieve it.

Well, I have STRONGLY believed since I first met Jon in Haiti in 2008 that with proper therapy, practice & encouragement, Jon could drive a power wheelchair.  HOWEVER, our insurance company and some of our (previous) therapists had doubts. 

I had no doubts.  I knew Jon had never moved beyond creeping 2-3 feet on the floor and that took over an hour.  I KNEW Jon needed independent motion.  He needed to get to his location without waiting for us to guess and offer to move him.

So with our new amazing home health aid for Jon, I knew it was time.  I had the therapists that I needed AND I resized an old power chair, private paid for a few improvements AND we put Jon in it. 

Yesterday he really didn't even want to sit in his new chair.  We pushed the chair manually AND only turned it on to show him the horn AND he still cried easily when he was not distracted with a movie or bubbles.

Today he wanted in the new power wheelchair this morning.  Amber took him on his usual tour of the neighborhood and she egaged the chair, dared to turn it on and drove the chair slowly around the neighborhood.  Then she showed him that he could push the button himself...at first he was scared!  Then within 30 minutes he was able to chase Matt with minimal assistance.  Jon was thrilled, but was soon very tired from all the thinking!  He could make shallow turns and go forward by the time the therapist arrived around noon.

Just think, this day was the equivalent of any other child rolling, crawling & taking first steps...rolled into one BIG day!  Jon had never had to think about his body in relation to others.  He has never had to consider if it was a space he could fit through or if it was something he could crawl over.  He had NEVER put his own body in moion beyond just a few slow inches at a time.  It must have felt like the wind was whistling through his hair at the speed he was now able to achieve. 

One thing for sure, it brought out the onrey little boy that I knew lived trapped in his brain.  He was highly motivated to try to "run down" his brothers.  He giggled with delight as he ran into furniture and it scooted as he "pushed".  Today was my warning from Jon.  He clearly showed me and the therapists that if we give him the opportunities, he'll be just as onry as his brothers.  Too bad insurance isn't interested in letting little boys have the chance to be everything that they dream in their heads. 

We had some more changes to make to the wheelchair and hopefully after I get those parts, Jon will be able to drive in reverse too and be better with sharper turns too.  Then on to getting a workable communication device and developing reading skills....yeap, I know....some teachers have doubts...thats okay because I don't.  I continue praying for the wisdom and resources, but I have no doubts.

¹¹ For I know the plans I have for you,” declares the Lord,

 “plans to prosper you and not to harm you, plans to give you

 hope and a future. ¹² Then you will call on me and come and

 pray to me, and I will listen to you. ¹³ You will seek me and

find me when you seek me with all your heart. ¹⁴ I will be

found by you,” declares the Lord, “and will bring you

back from captivity.~~Jeremiah 29:11-14a

Save money on prescriptions

Okay, I hate to admit that at my youthful age, I was checking out their web site, but www.aarp.org has some awesome tools to help save money on medicine.  I NEVER knew this until today.

The first tool that I was impressed with explains its function as the following:
" Have you ever wondered if the medication you’re taking is really the best one for your condition? Is there a less expensive, but equally effective medication you can use instead? Or is there a comparable drug with fewer side effects?  AARP’s Drug Savings Tool can help you get the most value for your prescription drugs and learn more about the medications you take."  My current pharmacist has saved us money when we switched from Walgreens by talking to our doctors about some adjustments, but it is good to know that I can easily access that type of information too.

The second tool that I was impressed with is a pill identifier. Now I know not every home is a mini-pharmacy like ours can be, especially during cold/flu/ear infection/strep throat seasons, but it seems there is always those mystery pills that are at the bottom of my pill bin or in my travel case.  This eliminates waste by letting me know what they are so I can still get the mystery pill used.  Since some medications in our home can cost over $5 per pill, even a couple reclaimed doses can REALLY add up!

Lastly, there are many programs from drug manufacturers, pharmacies, and organizations to help with the high costs of medicine.  Most of these programs are all located at a user-friendly web site at http://scpharmacist.net/ .  This is a pharmacist ran web site that gives credible information on all types of options when facing the challenges of obtaining medications within a budget. It has lots of links and is updated often.

A merry heart doeth good [like] a medicine:

but a broken spirit drieth the bones.

~~Proverbs 17:22

Why My Kids Don't "Do" Special Olympics...

Grace and Vanessa
Photo by Marie's Cottage Photography
mariescottagephotography@gmail.com

When my oldest Grace returned to public school for one year in 7th grade, I was shocked to find huge, unanalyzed support of Special Olympics.  It was suggested to Grace to run for Student Council and she was excited at the idea. However, we learned that she would be required to fund raise for Special Olympics and to volunteer with the organization.  The volunteering was okay with us since we thought it would be good for her to assess the organization first hand and arrive at some of her own conclusions.  However, we simply could not allow her to fund raise for this organization that we believe is a hindrance to opportunities for inclusive recreation for people with disabilities.  As a result, despite my pleading our case, Grace was not allowed on the ballot for Student Council. 

Special Olympics is like a sacred organization in our country, but many former participants, like myself, have strong feelings that the organization has failed to evolve into an "inclusive, consumer driven" organization.  I know I just rolled out jargon so let me explain.  "Inclusive" means disabled and non-disabled would participate in all levels of the organization and its programs.  For example, programs wouldn't be "for" people with disabilities, but rather "with" people with disabilities or better yet "by" people with disabilities.  "Consumer driven" would encourage persons with disabilities to be involved as coaches, volunteers, organizers and not just program participants.  "Consumer driven" would recognize the diverse talents of each person with a disability, rather than a pat on the head for "bravely trying" a new activity, which may not have even interested the person.

Let me briefly summarize my objections:

1.  When trying to enroll a child with a disability in a community sport, children with disabilities are frequently turned down and referred to the "Special Olympics", even if the sport is not offered by Special Olympics in the area.  The existence of "Special Olympics" often makes local YMCAs and park boards believe that they need "special training to work with special kids".  The situation couldn't be further from the truth.  Kids are kids and each is unique.  Every child just needs an adult that is motivated to learn about abilities and to create opportunities.

2. Kids with disabilities are diverse.  Some kids are good at reading, some at math, some at art or music or caring and listening or helping.  However, the Special Olympics reduces the person with a disability to a single interest for their PR.  Like their athlete's oath says, ""Let me win. But if I cannot win, let me be brave in the attempt."  The oath makes me gag.  I can guarantee you that most Special Olympians have faced opposition and difficulties a lot tougher than a 50 meter dash!  By the way, The Olympic motto is Citius, Altius, Fortius, a Latin expression meaning "Faster, Higher, Stronger", and the Olympic creed:  "The most important thing in the Olympic Games is not to win but to take part, just as the most important thing in life is not the triumph but the struggle. The essential thing is not to have conquered but to have fought well."  Now that is MORE like it!


3.  The Special Olympics rarely changes hurtful, exclusionary behaviors in peer groups.  In fact many teen volunteers actually believe that Special Olympians NEED segregated sports because "THEY" "might go off" or "hurt someone" or "be inappropriate" if THEY were included with non-disabled peers.  Just because the peer has a great day helping with the Special Olympics, it doesn't change who THEY sit by at lunch the next day. 

 4.  Smile!  When volunteers list their motivation for being involved, it is almost always for the smiles.  That in and of itself is okay, but it is often presented as though the volunteer doesn't think the participant regularly smiles. 
 
5.  Pity....it is such a pity that the volunteers are not trained to avoid using pity drenched comments and encouragement.  Patting a participant on the head should be grounds for dismissal and don't even get me started on all the inappropriate hugging between volunteers and participants.  In many cases, parents have set physical touch limits concerning strangers for the safety of their youngsters, but Special Olympic volunteers tend to tear down these limits as though they think they are the ONLY people who will hug this youngster.  The hugs are based on the volunteer feeling good and are not respectful of the close relationships (with hugging) that the Special Olympian already has in their life.
 
What needs to change?
 
1.  Persons with disabilities need to be involved at all levels of the organization, not just participants.
 
2.  The Special Olympics needs to be a resource for local community programs and offer them assistance (especially in finding and funding or borrowing modified recreation equipment).  Literature, 1-800 #s, and webinars would be a great start!
 
3.  A new "grown-up" motto PLEASE!!!!
 
4.  True "no pity" training for volunteers and include volunteers with disabilities.  Require debriefing trainings after events to work on changing behaviors to be more inclusionary.  THEY and THEM thinking should be challenged by the experience of volunteering, NOT solidified!
 
5.  Scholarships should be available to help athletes with disabilities train in inclusive environments.
 
Yes, I know this blog has made some people mad, BUT remember these are MY views as a past participant and as a mom who will not allow my children to participate until the Special Olympics catches up to the inclusive, self-directing, self-advocating world that is available to me and my kids.  Special Olympics ideals have changed very little since the 1960's and laws such as the Rehabilitation Act, IDEA, Fair Housing and the ADA have opened doors to inclusive opportunities that Special Olympics is still trying to keep shut.  For now, I think my kids are better off without the outdated ideas and experiences.
 

Paralymics Motto:  Spirit in Motion.

 

In 2001, the IOC has written its commitment to equal access to athletics for all people into its charter, which states, “ The practice of sport is a human right. Every individual must have the possibility of practising sport, without discrimination of any kind and in the Olympic spirit, which requires mutual understanding with a spirit of friendship, solidarity and fair play....Any form of discrimination with regard to a country or a person on grounds of race, religion, politics, gender or otherwise is incompatible with belonging to the Olympic Movement."

Drive III Wheelchair Review

As many of you know from Facebook, about a month ago my trusty wheelchair of 15 years had its frame break.  It is repairable and will be repaired, but it will take months to get the part due to the age of the chair.  Plus the chair really does need to be retired to being a backup chair.  My current backup chair is about 22 years old; the frame has been twisted and screws have been stripped by the abuses of jumping many curbs and international travel so it is literally "on its last wheel".

A Quickie RX

The replacement with a new Quickie® with the features similar to my old chair would be between $2200 and $1800 depending on discounts that I might or might not be able to get.  This is a BIG, unexpected expense so I checked ebay and second hand sales places like Missouri Assistive Technology's Swap N Shop, but I was unable to find what I needed at a reasonable price.  I decided to look for other brands that might offer better prices and I was intrigued to find a chair listed for $235.  It looked a lot like my first Quickie called a Quickie RX.  (Some of you may remember the old Quickie company slogan, "You'll never forget your first Quickie"...well its true.  My Quickie RX made me a lifetime customer and a wheelchair snob*.)  The $235 chair's knock-off design intrigued me.



Drive Cruiser III

 I researched this knock off called a Drive Cruiser III and found it at Wal-Mart online for only $195.  Plus it had free shipping to the store or 97 cent shipping to my house.  I have NEVER considered buying a wheelchair from Wal-Mart and certainly not for less than $200.  I ordered the chair on Tuesday and it arrived on Friday.  So we took it out of the box, made some adjustments and I've been using it for 4 days now.  The following is my thoughts about the chair.

• I was pleasantly surprised by the two axle heights that truly assure it is a hemi-height (can be pushed with a foot because your feet touch the ground when adjusted for this use).  Additionally, I was surprised by the 3 position fork so I could have the inclined seat that I like to reduce the pressure on my left hip.
• The seat is comfortable and seems very durable.  Since I like to fold and load the chair with my right hand only, I would have preferred a single strap across the seat to help fold the chair rather than the loops on each side.  The back is not adjustable and too high for my preferences.
• MAIN POSITIVE:  The front wheels are welded to the frame rather than screwed so it is more durable.  My 22 year old backup Quickie chair suffers from the screws shifting and enlarging the holes until the front tires no longer functioned properly.  I've made temporary repairs on this problem for years.
• The chair weighs about 7 pounds more than my Quickie did so right now I feel like I'm in an exercise program when I load and unload the chair.
• MOST SERIOUS NEGATIVE:  The wheels are bald indoor tires that can leave black streaks on the floor.
• The look and style is not bad.  It is kind of like owning a knock off Coach bag, but only a few people can identify a knock-off wheelchair.  For my preferences, the back push handles are TOO inviting.  As a full time chair use, those handles are a part of my "personal space" so if someone wouldn't touch my shoulders, they shouldn't push my chair especially without asking.  My kids even get this and from age 5 on, they don't push me unless I ask.  (Before age 5, it can be a handy way to keep track of kids, if they quit pushing, then I know to start looking for them because kids push all the time even when you stop.)
• MY SUMMARY:  A seriously good value for indoor home use.  An excellent choice for a back-up chair for a wheelchair snob, but I'll be saving up for a new Quickie as my full time chair.  This chair could have been my full time chair 1) if the back was adjustable to be lower, 2) if the tires had tread, and 3) if it were 3 to 5 pounds lighter. 

*DEFINITION Wheelchair Snob:  A wheelchair user with the attitude that medical supply sales people should not try to endorse or recommend a brand of wheelchair unless the sales person has personally used the chair constantly for a year, hauled it in/our of taxis, checked it on an airline and navigated many curbs without twisting the frame beyond what the warranty on the chair will cover.

Rain on my parade

No matter how rarely it happens, it happens too often.  It causes a dull hurt that I usually avoid to coming rushing forward into full consciousness with great pain.  When I was in high school, there was a grocery store that I avoided because this seemed to happen a lot when I went there to shop.  What am I talking about?  Well let me tell you what happened this time and then my pain may make more sense.

Yesterday (Sunday) afternoon, Mr. Workman and I were attending a church Christmas dinner at a buffet style restaurant.  The kids were excited and Vanessa used her walker from the parking lot to the back meeting room which was a LONG walk.  We were all excited for her.  Our whole church group clapped, whistled and cheered as she walked into the banquet room.  Each of them have prayed and shared in the journey with us with all our kids so they know what a big step has occurred for Vanessa.  Christmas cards and well wishes were exchanged along with enjoying a great meal with great conversation and laughter.  It was a great day!

Then we gathered our crew and were making our way to the front doors.  It was indeed like a parade!  Daddy with Nate and his oxygen, Corrine with the twins in their stroller, David with Matt & Hannah, Grace with Jon, and finally me with Vanessa all traveling together in a line to the front door.  Then an older gentleman stopped me and told me that he went to an amazing church and he offered me a business card for the church.  I recognized the church.  I explained to the man that I was glad he had a great church and we have a great church too, in fact we had just finished a wonderful meal with our church family.  He looked disappointed, and walked away. 

Then this gentleman somehow cut around the tables and stopped Mr. Workman.  He began with the same introduction and Mr. Workman gave him the same response that I had.  The gentleman responded shaking the business card, "Listen I had cancer, this pastor prayed and the cancer is gone...something to think about with the crew you have."  Mr. Workman took the card, smiled and walked on....BUT there IT was AGAIN! 

It is so frustrating and hurtful that apparently some people believe we would be better, happier people if everyone could, walk, talk, see, hear and be "normal".   Even more frustrating is the failure of this man of faith to recognize the healing that we have already enjoyed.  We have experienced many miracles in our family and Daddy was carrying one HUGE miracle...Nate!  Furthermore, these miracles were performed by God, not by our pastor.  Sure our pastor and church anointed with oil and prayed, but God did the work.

As a mom, these "faith healers" are even more hurtful to me than when they just try to "heal" me.  Like any mom, I think my kids are about perfect and for anyone to suggest that they would be better another way is a BIG insult.  I know one thing for sure and that is that the Lord has given my kids (or will give them) everything they need to complete His plan for their life...I don't want them waiting on some pastor to try to give them something that God in His Divine plan knew was not needed. 

Illness needs healing, like Nate's heart and lungs.  Conditions like Downs Syndrome and cerebral palsy are a part of who the person is...just like hair or eye color.  To pray for healing would be like praying for eye color to change (or bigger boobs like the cartoon).  Many times people have prayed for my limbs to be "restored", and then they have told me that it didn't happen due to my lack of faith.  When I told them that I just prayed that they would grow another arm and it didn't happen so they may have faith issues too, then these same people say I'm mocking them and God.  In an attempt to avoid appearing to mock God, I now just pray that God will give them manners and teach them gently about faith. 

I will praise thee; for I am fearfully [and] wonderfully made: marvellous [are] thy works; and [that] my soul knoweth right well. --Psalms 139:14

Is any sick among you? let him call for the elders of the church; and let them pray over him, anointing him with oil in the name of the Lord: And the prayer of faith shall save the sick, and the Lord shall raise him up; and if he have committed sins, they shall be forgiven him. --James 5:14,15

But my God shall supply all your need according to his riches in glory by Christ Jesus.--Philippians 4:19

ADA: An Alphabet Soup Day

Happy 20th Birthday to the Americans With Disabilities Act. I have fond memories of watching the news coverage on the proposed bill while in high school and being intrigued by the man in the out of place cowboy style hat.

Then in 1994, I went from a casual acquaintance with the new law to a deep, meaningful relationship. I attended many hours of trainings from DREDF, HUD, NCIL and others. I studied boring pages of law, recommendations, best practices, technical assistance and application. I met the man in the cowboy hat & learned his name was Justin Dart. I learned that the press never adequately captured his zeal, his inspiring speeches or his devotion to the value of all human life. I learned he was largely responsible for "selling" the ADA to congress and American citizens.

In 1994, I could never have guessed that the deep relationship with this and other disability laws would be SO long lasting or be paying for things like Grace's braces....Thank you ADA and all my access-impaired and access-aware clients!

Get involved in politics as if your life depended on it, because it does. -- Justin Dart

I count the good days in my life from the time I got polio. These beautiful people not only saved my life, they made it worth saving.--Justin Dart