Planning for the Future

One of my goals with this blog is to share lessons learned with other parents of children with special needs. While I’m certainly not as experienced as some parents, our family has been through certain challenges and taken advantage of certain opportunities and by sharing our experience we can potentially help other families. As Patrick and I venture on a kids-free vacation to celebrate our 10th wedding anniversary, I’m grateful we took the step to work with an attorney on estate planning this past summer. Estate planning is an important process for any parent, but for parents with children with special needs it’s even more important. First, let me say, I’m not a lawyer, so my words are not meant to be legal advice, they are however, special needs mom advice.

Shortly after our oldest, Aubrey, was born we created wills leaving everything to our children upon our death. If we had other children we wouldn’t even need to revise the wills because it specified our assets would be divided equally among our children – current and future. We were on top of things, but then we weren’t. In fact, the wills we had created prior to Emelyn’s birth could have hurt Emelyn. Why you ask? Doesn’t Emelyn need money to live as she grows and develops into adulthood? While she does need money, she needs it in a different format than a typically developing child.

Armed with this new knowledge, we set out on the estate planning process again. Let me first recommend finding a local attorney who specializes in special needs trusts. Don’t take chances on your child’s future with an attorney who dabbles in special needs estate planning or worse, go online to a fill-in-the-blank service. Your child’s future is at stake! Schedule a consultation and discuss your unique situation – I can guarantee your situation is like no one else’s.

For our family, our attorney recommended creating several legal documents that all work together. By creating our trust, pour over wills, powers of attorney, and medical directives at once, we ensure there are no contradictions, eliminating the possibility of confusion. And, of course, as life changes (and the laws), we’ll need to revisit these documents to ensure everything is still up-to-date.

If you need a reason to explore this process, here are my top five:

1. If your child currently receives government benefits or could receive government benefits in the future, such as Medicaid and/or waiver services, and/or Social Security income (SSI), they must have very little in the way of assets to qualify. An inheritance as little as $5,000 could potentially cause a disruption to these benefits. And don’t just consider what they could inherit from you, consider grandparents and other relatives. They, too, may need some revisions to their wills and/or estate plans.
2. You designate what the money is used for and who you want to administer expenditures so you know your child is taken care of even after you’re not around.
3. In the unfortunate circumstances of your untimely death, you designate the person or people who will care for your child(ren) after you’re not around. Who would you prefer decide, you or the court system?
4. You can protect your typically developing child(ren) through the process. A trust for typically developing children can have many benefits as well.
5. You can examine your financial situation. Do you have enough life insurance for example? And who is the beneficiary? Again, you likely don’t want it to be your child(ren) specifically, but the trust(s) you’ve established.

I will tell you estate planning is not a fun subject and it’s not cheap, but it’s the best money you can spend to protect your child(ren) upon your death, be it untimely or many, many years from now. And if you’re a planner like me, you can enjoy a kids-free trip even more knowing you’ve taken steps to protect family.

Hippotherapy

No, it’s not therapy on a hippopotamus – though wouldn’t that be fun. No, hippotherapy is a form of therapy using a horse. Emelyn began hippotherapy in August with her occupational therapist. While I wasn’t sure what I was expecting, I’ve been incredibly excited to see how she’s progressed. It’s not just the progress she’s made on the horse, it’s the progress she’s made because of the horse.

Emelyn cracking up her therapist, Megan, and the
volunteers at Healing Strides.

Hippotherapy uses the gait of the horse to provide input similar to a human’s gait. When Emelyn started in August she required quite a bit of core support on the horse, however, within just a few short weeks Emelyn now requires very minimal support. And more importantly, those advancements on the horse are translating into her everyday development skills. When Emelyn started hippotherapy she would drop an object in her right hand if you placed an object in her left hand. She didn’t seem to have the ability to coordinate both hands at the same time. Fast forward six weeks and she’s now able hold an object in each hand simultaneously for nearly half a minute. 

Clearly riding side saddle is just as funny.

There are large motor benefits to hippotherapy as well. The gait of the horse improves stability, balance and strength, while helping to “normalize” muscle tone (read my layman’s explanation of low muscle tone here). These are all areas of weakness for Emelyn that have shown improvement over the past several weeks.

Backwards...why not!?

While we’re thrilled with the physical improvements we’re seeing in Emelyn from hippotherapy, it’s also a blast to see her so happy while riding. I’m definitely a believer in this non-traditional form of therapy. Special thanks to Healing Strides of Virginia in Boones Mill, as well as the numerous volunteers, for the good work you do for so many little kiddos who benefit from hippotherapy and therapeutic riding. 

Low muscle tone in layman’s terms

Several weeks ago we traveled to UVa to meet with Emelyn’s neurologist who released us from routine follow-up visits with her. While seizures are a possibility, both because Emelyn has an underdeveloped hippocampus (revealed via a brain MRI) and because of her DDX3X diagnosis, we’ve been fortunate so far to have avoided them. Should we have any neurological concerns, including seizures, Dr. Heinan is only a phone call away.

During the appointment, Dr. Heinan remarked on Emelyn’s strength which led into a great conversation about how hard it is to explain low muscle tone. I told her, “I think people think Emelyn is weak because she has low muscle tone, but she’s actually very strong.” If you’ve ever been unfortunate enough to catch one her involuntary fists in the face you know what I’m referring to – that little hand has some real muscle behind it. Likely from two plus years of physical therapy.

Dr. Heinan shared a great analogy I couldn't help but share here. She compared low muscle tone to a weeping willow tree. While weeping willow trees appear to be weepy and floppy, they’re very strong trees. They grow tall with wild, flowing branches. And those branches can support the weight of a person swinging from them. However, unlike an oak tree, which looks tall, tidy, and strong, you can’t stand a weeping willow tree branch up on end. While strong, it’s just not made to easily support itself like an oak tree.

I loved this analogy for so many reasons, but mostly because who doesn’t love a weeping willow tree. They’re beautiful and unique – just like Emelyn.

Connecting

When Emelyn’s developmental delays were first becoming evident, I grew to hate social media. Seeing pictures and videos of other babies taking their first steps, drinking from a cup, and saying their first words was painful. It’s not that I wasn’t happy for those other families, because I was, but I was sad to see the growing divide between Emelyn and her peers. But like any grieving process, you do eventually get to acceptance and your mind stops the unhealthy practices of comparing and feeling sorry for yourself. It was then that I gradually returned to social media to find support.

When Emelyn was around one I connected with a local group of parents with special needs children on Facebook. While our children have different diagnoses, as well as varying abilities and challenges, we are all navigating the special needs world. The value of connecting with people who get what you’re going though is priceless. When I see a mom post a video of her son or daughter taking his or her first steps at five years old, I not only celebrate with her, but it gives me hope for Emelyn. And while I’ve come to love our online connection, I’m grateful to be able to see these other moms on a regular basis in-person. There is something extra special about our personal connections.

Now, nearly two years later, I’m once again connecting on social media. Within an hour of Emelyn’s diagnosis, I was on Twitter connecting first with another dad whose daughter had just been diagnosed with DDX3X, and then with a private Facebook group of a handful of parent’s with affected daughters. It’s a small group, of less than 100 members representing about 20 or so of our girls. While we’re spread all over the world, I’m hopeful I’ll get a chance to one day meet these moms and dads in-person. There’s something to be said for networking the old fashion way.

So, while social media once brought sadness, it now brings connections and hope. I’ve now read several parents’ descriptions of their daughters and they sound so much like Emelyn, “happiest person I’ve ever met,” “bright red hair,” “loves water,” and more. While you won’t find these things in a study, I’m finding our daughters are bringing a very special love and happiness to each of our families.