Low-Incidence Funding

When my husband and I were in grade school, there was no 504 or IEP for us.  It was just a simple understanding between the principal and my parents that I needed some adaptations, which were very little due to just “having to work with it”.  That was the 1970’s and 80’s where disability awareness was minimal at best.  But, we survived with our one step stool and simple things like asking a friend to help.  Fast forward to today with ADA laws and fear for lawsuits, our son has a nice adapted environment at school simply because we learned and are learning to make it easier and safer for him.

My own lessons learned as a parent:

  1. Ask for the equipment early in the year.  Basically, each district is given an amount by the federal government each year.  The pot is full in the fall semester, but once spring semester rolls around, it begins to deplete and you may need to wait until the following year to get it purchased.
  2. Research ideas for equipment by trying them in stores, going to friends houses, and getting input from other parents with children with dwarfism.  Not all forms of dwarfism fit the same needs.  For example, a product perfect for a child with achondroplasia, but not a child with diastrophic dysplasia. YOU should decide which equipment fits best for your child, not the OT, PT or teacher.  They may suggest some ideas, especially an OT who has experience with other children who have gripping or orthopedic issues.  Ultimately, you should be bringing them the picture, product link, or idea to help get the purchase through or get someone on the staff to build it (janitor, adaptive equipment dept., etc.).  Otherwise, your child’s needs may not be met and you will wind up with a big $300 piece of equipment that will just sit there collecting dust.  Another child could benefit from that low incidence funding.
  3. Come to school and see that it actually fits! Sometimes, a purchase will not go through or that the product won’t fit in a space as you might have expected.  When this happens, you can take care of the problem right away by discussing it with the staff who purchased it and see if they can return it or re-purpose it to order something else.  Sometimes nothing will fit that’s off-the-shelf.  Custom builds are common for children with orthopedic impairments, so don’t hesitate to ask.  If the District doesn’t have someone on staff to do the job, you can offer to find someone and outsource the work.

Here are some of the adaptive equipment our son has at school. Some of them have been with him since he was 2 years old at Early Intervention pre-school. You can find more information about Low Incidence Funding here.
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The Best Glow Sticks

Glow Sticks Are Fun!

A favorite staple of dances at conferences are the glow sticks worn by both children and adults. They come in a variety of colors and lengths. When we recently purchased a large amount of glow sticks for a regional conference, we tried to research online the best brand of glow sticks. There is not much information available, mostly that the Lumistick seems to be highest quality.

Lumistick 8 Inch 1000 Glow Sticks Bulk Party Favors with Connectors | Light Sticks Neon Party Glow Necklaces and Glow Bracelets | Glow in The Dark Party Supplies (Assorted, 1000 Glow Sticks)
  • ? 1000 PACK OF 8 INCH ASSORTED GLOW STICKS: You will receive 8-inch glow sticks 1000 Piece, all carefully packed into our iconic Lumistick cardboard tube. Get the most out of these sticks for decoration and fun. Hang them from things to create fun luminaries and enchanting walkways, you can enjoy the vibrant display of colored light trails. Make sure you get the best glow sticks by using this brand.
  • ? LONG LASTING LIGHT: Enjoy the glow radiating from your wrist glowsticks for up to 12 hours. After activation, these cool glow sticks will be at their brightest for 8-10 hours, then slowly fade. Choose from our array of colors and color combinations or get the assorted pack.
  • ? WATERPROOF, SAFE AND NON TOXIC: Our powerful glow sticks contain two chemicals that glow when mixed together (when the stick is bent and the inner tube is broken). Use these glow in the dark party favors even in the pool, these waterproof glow sticks party supplies are non leaking. Our sticks are non-toxic, non-flammable non-radioactive, and can be easily washed off the skin or clothes with ordinary soap if necessary.
  • ? KIDS SAFE & QUALITY ASSURED: The Kids are safe, glow in the dark party sticks are CPSIA-compliant. Make glow stick bracelets and glow in the dark necklaces for pool parties, birthdays, carnivals, raves, concerts, weddings, camping, and more.
  • ? UP TO 2 YEARS OF SHELF LIFE: These light glowsticks were manufactured just a few weeks ago and are fresh from the factory. The glowstick party pack comes in a handy tube that can also be used as a storage container for the unused Lumistick glow sticks. They have a shelf life of two years.

So we decided to do a semi-scientific comparison — activate the same number of glow sticks from different brands at the same time and judge their brightness. We purchased a package of major name brands from Amazon, WalMart, etc. We also bought the small 10-packs you can get from Target, Dollar Tree, etc. Right away we can tell you the Dollar Store glow sticks just don’t cut it compared to the major name brands. A lot of them were already activated or duds, and they just weren’t that bright.

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Finding Peace, Grace and Power: Words of Advice To My Children About Bullying

My grandmother was very wise in her years to instill the fire in my belly. But, I never knew how much that fire would need to be re-lit and fueled continuously throughout my life because people are just plain jerks. I’m not talking about the random, uneducated person that calls me a midget or the bratty 9-year old kid that thinks it’s funny to measure themselves against my height to show that I’m definitely shorter than them. It’s the continuous need to build a community for my children that is encouraging and supporting of them, no matter what they look like or what they accomplish. Coincidentally, that community is in one of the toughest places to build positivity– school.

Tirades about why bullying sucks is so passe’. We all know it and most of us have experienced it. But when children are involved and they have done nothing wrong to deserve it, but to exist, that sucks.

  1. Find peace within yourself to know that you deserve to be here on this earth, just as much as anyone else no matter how smart, fortunate, or popular they are. You are amazing just being you.
  2. Don’t you go discriminating against anyone else or you’ll be discriminated yourself. The next person has just as much to offer you as you have them, no matter what size, color, creed, or shape.
  3. Be graceful in your frustration with stupidity. How’s the saying go? Life is 90% how you react. It’s tough, I know . . . but, it will serve you well. If you really need to blow off steam, throw coins.
  4. Power comes in many forms and it’s not just to make someone feel small. Take that power and do good with it. Uplift someone else who has been wronged. They will in turn empower the next person.
  5. Numbers don’t mean anything, so when any popularity comes into view, ignore it. Know that you are loved and cherished.

Whenever in doubt, I remember this affirmation that a college professor taught me. It’s simple, so keep remembering it.

I am brilliant, powerful, limitless, love.

Top 8 Reasons Not to Record Disneyland Fireworks on Your iPad

  1. Really? Have you never seen fireworks before? They put on the same 15 minute show every day.
  2. It’s not like you’re at the National Mall on July 4th.
  3. You kind of look like dorks.
  4. You’re not going to re-watch the Disneyland fireworks show again from home. Or if you are planning that, wow that’s sad.
  5. What, are you going to post the video to Youtube? Good luck competing with the Bieb on page views for that.
  6. Seriously, the low-light sensor on your iPad isn’t going to make a great video.
  7. We’re ramming your feet with our strollers to try to get you to move, not because we want to cuddle.

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32 Teeth and All Brand New: Dental Care from Birth to Adult

TeethI’ll be the first to admit. I.hate.flossing. Absolutely hate it with a passion. First of all, my mouth is too small to reach my molars in the back. Having short fingers doesn’t help with flossing either. I could never get the floss around my fingers tightly while at the same time trying to wrap it around my tooth. Also, Achondroplastic dwarfs are prone to orthodontic issues. With the small mouth and normal sized teeth, it gets crowded and teeth are forced up against each other, which leads to tight spaces between the teeth to floss. All of these factors make it very discouraging to floss well and often.

Our son didn’t have any teeth until after age 1, probably due to having Failure To Thrive. In any case, his geneticist told us from the beginning to keep on top of his overall health. The Early Intervention program helped by offering health clinics free of charge like vision and dental screening. He saw a dental hygenist at one of these clinics when he was only 2 years of age.  That’s where we learned dental hygiene techniques for young children, whether or not they had a disability. We use these techniques even today with the kids being ages 7 and 3.  His first visit to the dentist was at 2 1/2 years old. At that age, he had 17 out of 22 teeth.  His follow-up was 6 months later to check on the flossing.  Our son hated brushing his teeth, but singing a song helped ease the chore.  He tolerated flossing only the front teeth.  Over the years, he got better at tolerating the brushing and the polishing at the dental office.
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