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Give Me Five

Five Ways You Can Keep Your Sanity during Quarantine

By Michelle Myatt, MSW, M.Ed, Vice President 5p- Board of Directors

  1. Take time for yourself!
    Stay hydrated and eat well. Good nutrition is vital to keeping you on your toes. Make sure you are staying active. Take a walk, find an exercise routine online or make one up with items you have at home. Enjoy hobbies you normally don’t have time for. Carve out 30 minutes a day that is just yours…this might mean getting up before your children or having older children watch younger siblings. This is your time to spend anyway you want. You will be better because of it. I promise.
  2. Forget the housework and chores for a few minutes and find time to just play with your kids. As parents, we are always so wrapped up in doctor appointments, therapy, schoolwork and playing taxi for all the activities our kids are involved in. Play time is good therapy for adults and kids alike. Reconnect with your kids and learn something new about them. Build a fort out of blankets, play board games, make up a scavenger hunt (inside or outside), have a dance party in the living room or make a craft together. You might even make items to leave on the porch for loved ones you are missing.
  3. Make a routine for yourself and stick to it. Pencil in the time for you, chores (let the kids help you) and time to help your kids get through their schoolwork. If you are working from home, add this time to your schedule as well. Make sure you are going to bed and waking up at the same time each day. Shower and dress just like you would if you had to leave your home for work or school. Routines are important and allow us to feel as if we have some control over our day. We can look back at a checklist and see what we accomplished that day.
  4. Limit your time watching and listening to COVID-19 updates. It’s good to be aware of your surroundings, but it’s also easy to become consumed by the sadness and anxiety that comes with inundating yourself with too much. Instead, reach out to friends and family. Call someone you haven’t spoken to in a while. Don’t forget those in nursing homes who are feeling very isolated right now. Did you meet someone at the last 5p- Society Conference? Contact them and see how they are doing.
  5. Lastly, if you feel as if you are really struggling, reach out to self help groups in your community. Your child’s school social worker or counselor would be a great place to start. They are well-aware of the resources in your area. If you need to chat with someone regarding concerns for your Cri-du-Chat child, you can find contact information on the 5p- Society web page.

Five Ways to Help My Children Cope with Quarantine

  1. Routine – stick to a schedule. Write it out, take pictures and make a visual schedule, or record it on your child’s device or tablet. Kids want to know what is expected of them and what they will be doing. This is a great time to remind kids to be flexible. Sometimes routines change. When they do, outline some ways you expect your child to cope with those changes (use their words, take a deep breath or two, or hug a teddy bear real tight)
  2. Nutrition – make sure your kids are not snacking so much throughout the day that they do not eat the nutritious food you prepare for main meals. This only frustrates everyone. We all know how moody kids can be when they are hungry or thirsty. Their bodies are sensitive to big changes in blood sugar. If your child has a feeding tube…you might need to set a timer to remind yourself. You have a lot on your mind right now and we cannot always depend on our kids to tell us they are hungry.
  3. Communication – talk to your kids at their level about Corona Virus and Quarantine. Give them facts that you feel they can handle without overwhelming them. Keep adult conversations away from little ears and limit their time in front of the television where updates seem to be constant. If you are having trouble talking with your child about what is going on, try reading the social story I have included. I wrote this for my daughter, Delaney (14) who is struggling with why we can’t see grandma and why we can’t go to school. You can have typical siblings illustrate the book which will also be good for their little minds as well.
  4. Social – our kids are missing so many important people in their lives. Make video calls to friends and family regularly. Don’t underestimate how helpful it is even to toddlers to see and hear their favorite people, even if it is through a screen. My ten-year-old has started handwriting letters to friends and mailing them. These are kids who have grown up with technology. So, the idea of writing a letter, dropping it in the mail, and learning to be patient while you wait for a return letter, is relatively foreign to them. It helps to break up the monotony of life right now. This works for grandparents too. Remember how fun it was to have a pen pal when you were little?
  5. Behavior – this is a crazy time for everyone with so many uncertainties. When kids feel stress, they communicate that through their behavior. You may see an increase in nightmares, whining, meltdowns and maybe even aggression. In addition to following the steps above, try teaching little ones to take deep breaths by blowing bubbles. You can make a spot in the house where your child or children can go if they are feeling overwhelmed. Give them pictures of family members and friends to look at, a stuffed animal, pillows and a soft blanket. Some kids may love to listen to music or even play an instrument. Big bear hugs or maybe a warm bath might be helpful. There are many scents that can be calming as well…lavender and eucalyptus are two of our favorites in my house. Lower your expectations a bit and give kids the benefit of the doubt when you can. They, too, are handling this the best way they can. They will be watching you for cues, so be sure to show them how you are taking care of yourself as well. Keep reminding them that this won’t last forever. We will get through this…together.
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A Social Story About COVID-19

By Michelle Myatt, MSW, M.Ed, Vice President of the 5p- Society

I wrote this story for my daughter Delaney so she could understand what is happening around her.

The Corona virus, or COVID-19, is a germ that makes people sick. It causes a cough, fever, and other yucky symptoms. I don’t like to be sick.

But I can stay healthy by washing my hands often with soap and water. I can also stay home and away from others. When I go out to walk or play outside, I should stay two to three bubble spaces away from people who do not live in my home.

Although it is good manners to shake hands or give high fives, right now I need to keep my hands to myself so that everyone stays safe and healthy.

I feel sad to not be able to see my friends or hug my teachers. I wish I could go to school. But it is closed right now while the corona virus is in the air.

When I feel sad or nervous, I can ask those who live in my house for a hug. I can also squeeze my stuffed bear or love on my pet. I can go outside to play in my yard or go for a walk. I can even read a book.

I don’t like being stuck at home so much. But I know it is important, so we all stay healthy. I do like being able to see my family more. My siblings are also out of school and my parents are working from home. I know this is hard right now, but it won’t last forever. One day, I will be able to go back to school and see my friends and family that I miss. Then I will be so happy again.

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Special Needs Trust Basics: What You Need To Know

Learn why it’s important for you to have a special needs trust for your child with a disability, and how you can start funding it immediately.

Rachel Stanford’s son Miles is 10, and has a developmental disability caused by a rare genetic syndrome called Cri du Chat. Miles was also diagnosed with ASD. 

Rachel describes Miles as being impulsive, with no sense of danger, non-verbal and sensory issues and, likely, will need lifelong care. 

“Right after Miles was diagnosed, my husband and I knew we had to do something to provide for his future,” says Stanford. 

Rachel knew that she and her husband, Matthew, couldn’t leave money directly to Miles without jeopardizing access to government benefits. So they hired an attorney to prepare a “special needs trust” in which money could be set aside for Miles’ care without risking the loss of benefits he’d otherwise be entitled to.

What is a special needs trust?

A trust is an arrangement where one person (the grantor)  gives assets, such as cash, investments or real estate, to a trustee. The trustee manages the assets on behalf of someone else, who is called the beneficiary. The assets set aside in the trust by the grantor is not directly owned by the beneficiary, but instead the beneficiary benefits from the assets in the trust pursuant to the terms of a written trust agreement.

A special needs trust is a particular type of trust designed for a person with a disability who is likely eligible for government benefits, such as Supplemental Security Income (SSI), Medicaid or subsidized housing. A person with a disability may not qualify for these benefits if they own assets in their own name. 

Because the beneficiary has no control over the assets, they are ignored when determining eligibility for government benefits.

The trust agreement for a special must be carefully worded in order to preserve eligibility for government programs. For example, the trust must state, among other things, that is intended to provide “supplemental and extra care” beyond that which the government provides, and that it is not intended as a basic support trust.

This means that the trustee cannot just give cash to the beneficiary, but instead, purchases certain approved items on behalf of the beneficiary that provide for their supplemental care. According to FindLaw, this can include: 

Paying for medical and dental care, equipment, education, treatment, rehabilitation, eye glasses, transportation (including vehicle purchase), or insurance (including payment of premiums of insurance on the life of the beneficiary), essential dietary needs, spending money, electronic and computer equipment, vacations, athletic contests, movies, trips, money with which to purchase gifts, payments for a companion, and other items to enhance self-esteem.

Do I need a lawyer to set up a special needs trust?

You are not required to hire a lawyer to create a special needs trust. There are books and online resources that can guide you through the process. 

However, the creation of a special needs trust may also involve updating (or creating) a will, and thinking through some difficult questions about alternate trustees and how to provide for siblings. Often, people find the process to be a bit more complicated than they are comfortable taking on themselves and end up hiring a lawyer.

This was the case for Rachel Stanford, who is an attorney herself. 

“I don’t practice trust and estate law, but I knew enough that we had to do something to provide for [Miles’] future,” says Stanford. “A coworker advised me about how to do this and recommended a lawyer who could help us get it done. There are a lot of things I will try on my own, but this is so specialized, I just didn’t want to mess it up.”

[Incidentally, I am also a lawyer and, like Rachel, not a trust and estate attorney. I did start to do the research to draft a special needs trust on my own, but found it to be confusing. My wife and I also hired an attorney to draft a special needs trust and update our estate plan.]

If you hire a lawyer, don’t be afraid to shop around. The process of drafting a special needs trust may be too difficult for you to do on your own, but the reality is, the work is form-based and generally requires minimal custom drafting. 

The value in hiring a lawyer is for them to ask you the “right” questions, so you create a plan that works best for your particular family situation. But, for a skilled attorney, this shouldn’t take a lot of time and, once done, a paralegal can make quick work of the drafting.

Look for a lawyer who will work for a flat fee, as opposed to one who works on an hourly basis. 

Expect to pay between $500 to $1,500 just for the special needs trust. If the trust is prepared as part of an overall estate plan (with a will and family trust) expect to pay between $1,500 to $3,500. Unless you have a very complex estate situation (lots of assets, blended families or multiple business interests), if you get prices that are more than $3,500, keep looking. 

Ideas for funding a special needs trust

Setting up a special needs trust is the easy part…funding a special needs trust can be a whole other challenge. In the same way many families struggle with saving for retirement, they can struggle with setting funds aside for a trust.

The key to success is starting early.

Families with younger children often purchase life insurance products to fund a special needs trust if they should die. Term or “second to die” life insurance policiesare inexpensive to purchase when you are young and healthy, and can be a good way to make sure your children are cared for (financially), in the event you die unexpectedly.

Term policies end after a fixed period of time, so get a policy with the longest term you can afford, because it will be much more expensive to renew a policy when you are older.

Parents also save money over their lifetime, same as the would for a retirement account, which is then either deposited with the trust, or transferred to the trust after they die by operation of their will. 

Trust assets don’t have to be limited to cash or securities. Some families purchase real estate or transfer interests in a family business that can pay long term rent or dividends. 

California mom, Denise Lansford is co-trustee with her husband of a special needs trust for their son Jason, an adult child with Cri du Chat. “Jason’s grandfather had his own company and left shares in the family business in a special needs trust for him,” says Denise. 

Dividends from the Company are paid to the trust, which Denise uses to buy things for Jason’s care that government assistance doesn’t cover, like taking Jason and a companion on a vacation.

Commercial property manager Solomon Green manages a commercial building with multiple retail rental spaces in Deland, Florida. The building is owned by a special needs trust that was set up by a couple to provide for their daughter, who has a developmental disability. The daughter is now in her 60’s and the parents long deceased, but the trust receives lucrative rent checks monthly. 

The parents purchased the building decades ago. Over many years tenants’ rent paid off the mortgage, and the building, which is now debt free, generates a substantial income with very little expense. “It was a smart investment,” says Mr. Greene. 


Sometimes the hardest part of creating a special needs trust is overcoming the inertia of getting started. As with all estate planning, the process of dealing with your immortality is morbid, and a subject many of us would simply like to avoid.

But unless you are independently wealthy, the best way to make sure your child is provided for in the future is to start early and use the benefit of time to build assets or income streams.

If it’s something that’s been on your mind, get started today!

About the Author

Stephen Furnari is a Florida attorney and the founder of Guardian Project, which provides free resources for parents seeking guardianship for a child with an intellectual or developmental disability. Stephen lives in Flagler Beach, Florida with his wife Kristi (who serves on the Board of the 5P- Society) and three daughters, including 10 year old Katie who is affected by the disorder.

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Brown Family from North Carolina

Confronting Cri du Chat with Grit and Grace

Brandon and Christina Brown were overjoyed to be first-time parents. Like most, they wondered if their baby would be a boy or a girl, and they hoped he or she would be healthy. The young couple welcomed Graham Timothy to their world on St. Patrick’s Day, 2016. All seemed well at first, but then came a string of health problems that worried the young couple. Graham began to have trouble with feedings. He was diagnosed with acid reflux and milk protein intolerance and was referred for feeding therapy. Their feeding therapist at Pediatric Boulevard in Indian Trail noticed Graham had general muscle weakness and recommended physical therapy. The physical therapist was concerned that Graham’s eyes were delayed in their ability to track movement.

(Click on title for more of the article)

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2017 Awareness Week: News and Events

As articles come in for Awareness Week, May 1-7, we will post those here for you to view.

Mukwonago child with Cri du Chat syndrome thrives and shines

Karen Pilarski, Lake Country Now, April 27, 2017

On the wall of the Losen’s Mukwonago home is a black frame with the saying, “Good things are going to happen.” Underneath the picture sits Evelyn, 7, and Marian Losen,5, snuggled on a beige chair.

Nearby their brother Jacob,9, lays on the floor with his iPad, his bright orange tennis shoes are sticking out from under him.

(Click on article title to read more of the article)

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