This is BIG – Saving for the Future

This is BIG – Saving for the Future

Hey special needs parents – There is something coming down the pipe line that is KIND of a big deal. Just last week a bill passed the house that will effect you and your child, so perk up those ears, listen in, and get involved if you can because there is still a little ways to go. When we found out that Dylan was going to have special needs we had no idea what her potential was. Children like her range from almost fully typical to not compatible with life and there are many children in between. We knew that Dylan would like rely on us her entire life, financially, among other things and we sought council and advice on how to go forward. The one major piece of advice we were given, that everyone who has a special need child was given? Do not have a savings account or any assets in Dylan’s name because it would jeopardize her ability to get government assistance when she turns 18. Government assistance like social security to help with the hefty medical bills, respite care, and most importantly for many, medical insurance. Are we duping the system by not having savings for Dylan? If we have a saving account for each of our other children, why not Dylan? Is there something shady about this? Let me spin this another way… Dylan will be dependent on our care for the rest of her life, no doubt about it at this point. She will never hold a job, live independently, or earn her own money. But there are a lot of children out...
Do You Have a Runner?

Do You Have a Runner?

A lot of children with Autism and Down Syndrome (among other diagnosis) love to run, run away, far… fast… and they don’t have the ability to process consequences or danger. They are focused on the instant gratification in spite of negative consequences. Unfortunately, what this means is that a lot of parents avoid taking their children to crowded places like the circus and zoo, for fear they might bolt. Eloping they call it… there is an actual term because it is an actual, pretty serious challenge for special needs parents! I shared a recent story about a friend of mine, it was a scary situation! What can you do ahead of time if this is a problem you face frequently? Temporary Tattoos – There are a few options for temporary tattoos. Some have you write the number in a location on the tattoo with a marker once it’s been placed but others are fully customizable. I found several vendors, even Etsy, by searching “Temporary tattoos with phone number”. They are very reasonably priced, we are talking as low as 45 for $20,with the phone numebrs! This is a great option for crowded places. Teach older children to show the tattoo to others, no words required. Harnesses and Leashes – There are a number of somewhat fun and stylish kid backpacks on the market that function as harnesses. Not only will many children like the style of the pack, but they also provide some weight and sensory input. You can also put some of the tiny things to keep tiny hands busy inside! Check online for “Toddler safety harnesses and...
Uh-Oh, a Runner!

Uh-Oh, a Runner!

Friends of mine had a scary moment this summer! Spoiler… but it all worked out in the end. I wanted to share because during this little event, some things went right, and some things went wrong, and some things COULD have gone REALLY wrong. Some friends of mine were at a local amusement park. They have a six-year-old son with Down Syndrome, Spencer who is fun and loves to run… LOVES to run. They had just got done on a fun water ride, twice, Spencer loved it! But they needed to take a little break and went to get something to eat so they went away from the ride and on to the tables by the food carts. The parents who were there together went back and forth ordering, getting situated and picking up a food. And then they realized that Spencer was gone. It was one of those “Well I thought you had him!” and “But I thought you had him!” moments that all parents have had at one… hundred… times. But, being in a crowded place and with Spencer’s diagnosis this made for a very scary situation! Immediately his mom went to the ride that they had just been on that he loved. They had asked around if anyone had seen a boy with down syndrome and while asking people in line some said no and then a few started saying yes! Turns out, he had pushed his way through the entire line. He pushed through, down onto the moving loading platform and onto a raft with another family. The workers and people in law watched it...
Now That’s Fashion!

Now That’s Fashion!

People who have Down Syndrome have certain body features and characteristics in common. They tend to be a bit shorter than typical and have a wider build. Also, short arms, higher knees and a rounded tummy. As you can imagine finding clothes to fit “just right” proves to be a bit of a challenge. I personally have heard older men and women with down syndrome complain about having to shop in the kids section, forced to look for “husky” clothes that are often too long and don’t fit right. No teen wants to shop in the kids section! The truth is, finding clothes to fit perfectly will probably always be a challenge. With Down Syndrome affecting only about 400,000 people in the United States it’s far from lucrative for the fashion industry, so where does this leave us? Two companies are rising to the challenge. Ashley by Design and Down’s Designs. Ashley by Design was started by Ashley DaRamus (a former Special Olympian!) and her mother and they design very fashionable clothing that not only fit proportionately but they have ruffles and patterns to hid that rounded torso. Ashley’s goal is for everyone to be able to choose clothing that they look good and are comfortable in. Proceeds from clothing sales go to The Ashely DaRemus Foundation – which, from their description “was founded for and dedicated to the education, advancement and quality life-style of children and adults with Down syndrome. Through the work of Ashley and the foundation, our goal is to increase the awareness and enlighten others about the rewards and positive contributions we make.” Her clothing really...