Category: Parenting

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Adult Twins, One with Down Syndrome, Inspire Hope

Our story of advocacy starts with two babies who shared a womb, born just seconds apart, whose bond is unbreakable.

Whose expectations at home are the same: respect, hard work, and love. The only difference between the two is about 4.36 seconds…

Twins really catches people’s attention. So having twins, one typical and one with Down syndrome, can often feel like a circus.

Troy (back) with his typical twin, Hunter (front) at 8-months-old

A normal trip to the grocery story with my twin babies garnered constant attention. If I had a dollar for every time someone tells me “You have your hands full,” I would actually make a decent wage at this stay-at-home-mom gig. If I had a dollar for every time someone stares extra long at both boys, trying to figure out how they’re actually twins, I could retire!

The likelihood of having twins, one typical and one with Down syndrome, is 14 in a million. If families blessed enough to have a child with Down syndrome take the moniker the “Lucy Few,” then we’re the “Lucky Ones.” I really should start playing the lotto (LOL)!

That’s why meeting other families with twins, one with Down syndrome, is so special. You feel like you’ve met a secret tribe that fully understands the blessing, and sometimes curse, of having children the same exact age with such different developmental paths. If comparison is the thief of joy, imagine watching your son with Down syndrome struggle to do things that come naturally to his twin. Still, it also comes with many surprising perks.

We never take life for granted, and both our boys are true fighters with an empathetic spirit.

You can imagine my excitement then to meet a set of successful adult twins, a typical sister and a brother with Down syndrome. I got a chance to see 39-year-old Katie and Kris Faith at the National Down Syndrome Convention this summer in Sacramento. Theirs is also a story of advocacy that has led to a life of self-determination and success for both twins.

Katie Faith Lingo and Kris Faith

“When we were born in 1978, our doctor was not encouraging. He suggested to our parents that they did not have to take Kris home. But leaving Kris at the hospital was NEVER an option for our family,” Katie Faith Lingo says. Undoubtedly, the Faith family decision to keep Kris was the exception rather than the rule at that time. However, Katie says her parents were adamant that what others saw as a burden, would end up being a blessing.

An Inclusive Family

Today, Kris works at California’s Department of Developmental Services as an office aide after attending the local city college. His sister, Katie, has a Master’s in Special Education and is an Inclusion Specialist at their local school district. It’s obvious that Kris’ disability led them to a path of service, but how did they get here?

The twins say it was their parents’ openness and determination to include Kris in every aspect of life. “Kris was accepted and loved. He was also expected to be a contributing member of our family with the same chores and responsibilities as all his other siblings,” Katie describes.

And it wasn’t always Katie who protected Kris. “I remember finding Kris pinning a guy to a locker in high school. After defusing the situation, I asked Kris: ‘what’s going on? Was he bullying you?’ Kris said ‘no, he was making fun of you!” Katie remembers.

At a time when inclusion didn’t exist, Kris’ parents pushed for him to be mainstreamed in his neighborhood school, sharing classes with his typical peers. “In middle school I earned the highest award, the Principal’s Award for Courage and Determination. I was also the ball boy for basketball. It was fun!” Kris describes. He went on to graduate from high school, and enroll in both general and special education college courses.

It’s obvious the doctors were wrong about Kris Faith. “Kris ended up influencing the path of my life, and has given our family the unique ability to see individuals with disabilities as more alike than different,” Katie explains. “I’m so glad I was born into a loving family. I’ve been given many gifts. One day I dream of being a famous author or song writer, but I feel like I’m already living the dream!” Kris exclaims.

The Faith twins’ story is such an inspiration to families like ours. They remind us that this unique road is worth it, and advocacy matters. Thank you Kris and Katie for sharing your story!

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Brother Urges Parents to Prepare Typical Siblings For the Future

“My sister helped shape the trajectory of my life!”

Phillip Clark adores his sister, Sarah.

“I was 4-years-old when she was born, and I knew she was different then. From a young age, I knew I would always protect her.”

Clark kept his promise. He even created a career path centered around Sarah and other individuals with disabilities.

Clark owns ENABLE Special Needs Planning, LLC, and works with families daily to get their financial, life, resource, and legal plans in order for their child with a disability.

Phillip with his parents, wife, and sister’s Sarah and Grace

“We often talked about future planning in our family. When I was going away to college, my parents sat me down and explained how they prepared for Sarah’s future. They said she would live with one of my cousins if my parents both passed on. I told them ‘absolutely not! Sarah and Grace (the youngest, typical sister) would live with me’.”

When Sarah was born 28-years-ago, doctors told her parents she would
never learn to read, among many other limitations. However, today, Sarah works as a second grade teacher’s aide, tutoring students in reading.

 

Clark credits Sarah’s success to his parent’s diligent planning early on. “They always focused on her abilities, and they always included my typical sister, Grace, and I in the decision-making process.”

Phillip Clark with his sisters, Sarah and Grace

In his professional experience, Clark has found that parents who didn’t plan are struggling as their child ages.

“Some of these parents are in their 60s, and their adult child is in their 40s. Many didn’t plan, and now there’s not much help for them. Most end up in government run day programs, because the parents can no longer care for them at home.”

His advice, start early and think abundantly about your child’s future. Include your typical children as early as possible in the future decision-making plans.

Clark is optimistic about the opportunities that individuals with special needs and their families currently have. He believes these opportunities will continue to grow as awareness continues to get stronger.

“The generation before Sarah was often institutionalized because people didn’t realize the profound impact that individuals with special needs could have on their families, communities, and businesses. Sarah’s generation was the first to widely stay at home with their parents; but the awareness and opportunities weren’t yet there for them to be fully included in all aspects of life. The next generation will have countless opportunities for inclusion, and parents need to be prepared for this new reality.”

Clarks says it’s not enough to plan financially. 

His personal journey allows him to understand the difference in planning  special needs families face, compared to typical families. He explains that every aspect of your family’s life and child’s life must be carefully considered.

It is important to plan financially, but equally important to create a Life Plan and a Resource Plan. He says you must make a Life Plan for your child that gives him or her every opportunity to live a purposeful, impactful life.

As for Sarah, Clark says she is busy leading a fulfilling and purpose-filled life, but he’s prepared to help her when she needs him.

Clark is a Special Needs Planning consultant licensed to serve families in every state. He provides Life, Resource, and Financial consulting services and referrals for Legal Planning. He also created a database of resources for special needs planning. See what services Clark can provide your family here.

Inclusion Evolution and it’s author did not received any services from Clark or Enable Special Needs Planning.

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Evie’s Sleep Story

The Following is Evie’s Sleep Treatment Story as Told By Her Mom, Jen Alge: 

Read about new research that links sleep issues with cognitive, memory, language, and behavior issues HERE.

I could write a book about this. Evie’s had 7 sleep studies. Her first was at 11 months, because they were trying to rule out pulmonary pressure issues before doing heart surgery. She had mild apnea then.

We did another sleep study before her first set of tubes and they found she had severe sleep apnea. They put tubes in and took the adenoids out. She still had severe apnea. They then did the tonsils along with a tear duct probe and another set of tubes. Then her apnea was moderate so the tonsils helped a bit.

Then we did a simi MRI to get a better read on her airway. That helped the docs a ton. I highly recommend that procedure. But that showed us just how obstructed her airway is so that’s when we started the CPAP (Central Positive Air Pressure). Due to her tiny facial structure and age (she started this when she was 4) it took a while to find the right mask and pressure that she would tolerate.

Doing a sleep study to titrate the machine was the most challenging sleep study- keeping a canula in with a CPAP is rough. So they gave her ambien to get that result. Then after several months of her only wearing the CPAP for 2 hours we did another sleep study and this time with a time-released melatonin. That did the trick.

So Evie takes a pill like a champ every night along with her nasal steroid and allergy meds to open her airway. After we got her pressure where it works best and a full face mask, she wears her CPAP an average of 7 hours a night. Now, she’s on a pressure of 11, and the full face mask isn’t the best option because when she moves the seal breaks pretty easy. So we’re not at the finish line yet. But the docs are happy with her use and they want to kick us out of the upper airway clinic.

I’m holding on because, yes, she does wear it on average 7 hours a night, but that’s only because I’m in her room 5-8 times a night at least putting the mask back on. She lets me put it back on, but man is this lack of sleep going to get old someday soon. And I’ve definitely considered other options like orthodontic pieces and the surgeries they really wanted to do when she wasn’t wearing her CPAP more than 2 hours.

Those surgeries are 3 in total: 1. Cutting the back of her tongue and pulling out some tissue. 2. Cutting away her lingual tonsils at the back of her throat (this is a risky procedure with a long recovery due to the risk of her throat swelling and closing up- lots of steroids) 3. The insertion of a screw under her chin with a string tied to her tongue to keep it forward. Evie’s problem is not the tongue, the throat or the width or length of her mouth- it is all three. So only all three procedures would solve it. Oh and all three procedures only have a 60% success rate so she’ll likely still need a CPAP. 🙂

I’ve notice no behavior changes since the treatment. Evie’s always been a smarty pants and she talks all day long so I can’t credit the CPAP for any changes there. I will say she is getting more air and isn’t gasping for breath or snoring with the cpap on so that’s a relief. The behavior changes might be more long term given her age.

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Enjoying the Quiet Before the Storm

A typical week for me may seem like a hurricane to others. It includes 24-hour care of my three kids under 5-years-old, at least three private therapy sessions for my son with Down syndrome, typically one medical appointment, swim lessons, preparing 3 square meals a day, and keeping house (whatever that entails in 2017 LOL!).

I do this with no family support system (the closest lives 500 miles away), and my husband works 80+ hours a week as an Emergency Medicine resident (although he’s amazingly helpful even with his insane schedule).

Looking at our crazy life, one would NOT imagine these days are the sunniest. But in many ways, this is the quiet before the storm!

As the school year fast approaches and my twin boys enter their third and final year of preschool, I realize this is the last year our young family will enjoy the safety of naivety. I have one more year to bask in the glory of unasked questions, the freedom of play, and power of a small circle of family and friends who accept us for who we are: PERFECTLY IMPERFECT!

Troy (back left) enjoying life with his typical twin, Hunter

That’s one more year of easy-peasy IEP meetings, no homework or standardized tests. One more year of kids playing with Troy on the playground without asking why he’s so little or can’t talk like them. One more birthday where the boys want a party with the same friends, same theme, and same gifts. One more year where my boys think of themselves as they are: TWINS.

Next year, my first born sons will start “real school”, and boy has it changed a lot in the generation since I attended kindergarten. You’ve likely heard the news: kindergarten is the new 1st, or is it 2nd grade.

As we peacefully go through life in the safety of our home, I often worry if Troy will be ready. Of course he will, whether I’m ready or not. I also worry that his typical twin, Hunter, will struggle with the confirmed knowledge that Troy is indeed different. The words “Down syndrome” come up a lot in our house, and even though Hunter uses these words freely in conversation he has yet to assign it to his twin brother.

As a parent of a child with a disability, I’ve practiced in my mind how I might explain this revelation of difference to my typical children. Will I choke when the time comes to pass on this sage advice? 

Troy’s sister, Cora

My 2-year-old typical daughter, Cora, is the perfect playmate and foe to Troy. Theirs is a love-hate relationship. But I’ve noticed lately she’s been innately mastering milestones that Troy is just starting to find easy: jumping, verbalizing complete sentences, dressing independently.

How will I navigate the rough seas of a younger child surpassing an older one?

Still, these intimate family dynamics will likely not be what causes the biggest waves a year from now.

Instead, it may be the storm outside our doors.

It may be the teachers or school administrators who deny equitable education to my son with Down syndrome.

The older students who ask Hunter why his twin can’t do the same things he can.

The sports coaches who can’t find a spot for Troy to play on a peewee team.

The parents who remark about how “cute” Troy is, while quietly worrying about the impact of his presence in their typical child’s class.

They say meteorology is the only profession where you can be wrong 50% of the time. So, here’s hoping my predictions for the storm to come are unfounded! 

Even if my predictions do come true, I realize now it will be ok. We’ve been through a lot as a family, even before our kids were born. Even through rough times, we’ve held tight to each other knowing we’d see brighter days.

And what I’ve learned and hope to instill in my children is the sunniest path isn’t always the prettiest. Sometimes the storm helps you put life into perspective.

Sure, if I we could have it all, I’d wished my kids easy, fun-filled lives, full of lots of interesting friends, successful careers, heaps of money, and perfect marriages. But if we can’t have it all; If I can only choose a few, EASY wouldn’t make it on my wish list.

Instead, I’d rather my children live an authentic life, where they feel compelled to stand up for what is right and good in this one life we’re given. This is the rainbow after the storm in a life connected to Down syndrome. We are the lucky few!

 

 

 

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5 Ways You Know You’ve Become Your Child’s Best Advocate

Five years ago my biggest worry was buying the cutest matching outfits for my unborn twin boys. All that changed when one of our boys was born with Down syndrome.

Troy (in the back) and Hunter (in the front)

Troy completely changed our family’s perspective, and set me down a path of advocacy that has changed my life forever.  

An outsider may believe these changes would be for the worse, but I continue to be amazed at how many new, unique doors have opened for me because of Troy. I continue to be amazed at how “normal” and happy our family continues to be amongst the messiness of a seemingly scary diagnosis. We truly are the #luckyfew!

Everyone’s path is different, even in the small world of the Down syndrome community. But I’ve found some shared characteristics amongst many of the parents of children with special needs that I’ve met.

Most parents possess that innate strength to do anything to protect their child. Special needs parents just have to flex that muscle more often.

In five short years, I’ve become a champion for my son and his right to a life of self-determination and choice. And I realize I’m not alone. Many disability advocates can identify with the following actions, or something similar to them.

5 Ways You Know You’ve Become Your Child’s Best Advocate

1. Your child’s personal file is larger than your own.

Troy is a really healthy, smart fellow. Still, Down syndrome automatically comes with a long list of doctors appointments, therapy sessions, and Individualized Education Plans. All of this has been compiled on hundreds of pages in two giant 3-ring binders.

Experience has taught me that you don’t know where you’re going, unless you know where you’ve been. Troy’s records help me quickly reference what’s happened in the past, so I can advocate for the best future possible.

2. You can recite federal, state, and local laws that impact your child, and you often know more about these policies than the experts do.

You can recite the meaning of countless acronyms: IDEA, IFSP, IEP, FAPE, LRE, SSI, BIP, ADA, ABA, UDL, ASL
You know your child’s rights under the law, and realize that in many situations it’s up to you to see that laws are enforced.

Personally, I’m working with my Ohio state legislator, Niraj Antani, to introduce a bill that would end organ transplant wait list discrimination for individuals with disabilities. Rep. Antani seeks advice from disability advocates on this subject, because he realizes we are the experts.

In terms of the recent Senate health care bill, Better Care Reconciliation Act (BCRA), I’ve been advocating tirelessly alongside fellow disability advocates to see that Medicaid is not cut. Many legislators are unaware of the important impact of Community and Home Based services Troy and other individuals with Down syndrome receive through Medicaid. It’s our job to educate those in power on the power of legislation, and how it’s revolutionized the disability community in the past generation.

3. You’ve become fast, close friends with complete strangers.

Social media is a powerful force in the disability community. It’s brought together like-minded advocates from around country to rally for a common cause. I have dozens of friends that I’ve never met, but feel a special bond with because of Troy. When I meet these fellow special needs parents at conferences or advocacy meetings, it’s like meeting a distant loved one. There’s an instant connection and a desire to share your path with others like you. It’s what makes us the #luckyfew.

4. Your hobby or new career path includes advocating for your child.

I have interviewed and spoken with so many amazing parents, siblings, and family members that have transformed a seemingly scary diagnosis into an opportunity to change people’s perceptions and create opportunities for their loved ones. Everything from volunteering for their local Down syndrome association to blogging about their experience to starting a business that specializes in special needs planning and marching on Capitol Hill.

Before I had Troy I taught middle school history, and assumed I would go back to teaching once my twin boys were in school. Now I’m applying for the Council of Parent Attorneys and Advocates Special Education Advocacy Training to become an advocacy expert. My number one priority in doing this training is ensuring Troy gets the education he needs and deserves, but I would also love to help other families along their journey. I’ve always wanted a job that serve others, and I’m proud to say that Troy has helped me continue on this career path in a new and surprising way.

5. Your vacations include meetings with your legislator or advocacy calls

#PureMichigan

We just spent a week in Michigan with family, and I really wanted to turn off all things advocacy. I was feeling disability advocacy fatigue big time, especially with the endless fight to #SaveMedicaid. I did a fairly good job of this with trips to the lake, shopping, and running a race with my mom. Still, I couldn’t help but call a fellow disability advocate friend to find out about an important advocacy meeting she had while I was gone.

Even my vacations have been planned around advocating for Troy. We coordinated a trip to see family in California with the National Down Syndrome Convention. I visited my favorite city, the District of Columbia, this past spring to advocate on Capitol Hill.

Of course, you can take a totally different path and still be your child’s best advocate.

I have friends who purposely disconnect from any disability-related advocacy efforts. I can respect and understand their choice to do so. In the end, it’s about loving your children for who they are and supporting their path to a life of self-determination and choice. There’s many ways to get there. Which path have you chosen? Tell me about it below.