Saturday, February 15, 2020

ABC Pediatrics Offering Free Screening

 ABC Pediatric Therapy has this handy interactive tool to make sure your child is meeting his or her milestones! Follow the link HERE

Wednesday, February 5, 2020

Looking to return to work?

A former colleague and friend sent this to me last week after hearing about all the challenges I've been facing returning to work after caregiving the last 25 years. It's been an interesting journey returning to work, finding only part-time positions at best. A journey that continues to be even more difficult than the one Elisabeth took us on 25 years ago.

Path Forward is a nonprofit organization on a mission to empower people to restart their careers after time spent focused on caregiving. They fulfill this mission by working with companies to create and run mid-career internships — also known as “returnships” — that give women and men a jump start back to a professional career while giving companies access to a diverse, untapped talent force.
Since 2016, they have worked with more than 50 companies to create a return to work programs, including Walmart, Netflix, Apple, SAP, NBCUniversal, Verizon, PayPal, Intuit, and others.  More than 80% of the participants in their programs have been hired by the companies where they completed their returnships.

Looking to return to work?

"It’s important to reconnect with your professional self. In our culture, our identities are so tied up with what we do. When you’re working you describe yourself as, “I’m an accountant, I’m a lawyer,” and when you aren’t working, you have to describe yourself in a different way. Re-training helped me start recognizing myself in a professional context, but what really helped me was connecting with former colleagues. Just talking with old coworkers and people in your network helps you reconnect to that version of your life and a sense of identity around your career. It will help you interview well, be more confident, and project a professional, capable image." -  Beth Frasco

Beth Frasco, Senior Business Analyst NBCUniversal, took a 16-year break from her wireless engineering career to support her growing family through several big moves. She talks about her returnship experience in the Act Two program at NBCUniversal, how she prepared for her return to work, and the steps she took to reconnect with her professional self.
Questions? Check out their FAQ for answers. Looking for guidance on where to start? Get a  free Career Restart Kit and find resources on job searchingcareer strategieswork/life balance, and more on our blog.

Sign up here to become a participant. You’ll get a weekly newsletter and job alerts when new return to work opportunities open up in your area. 

Looking to hire returners?

If you’re looking to tap into the diverse and experienced talent pool of people returning to the workforce, Path Forward can help you quickly and effectively start a return to work program at your company. Leveraging best practices learned from our work with more than 50 companies, we’ll deliver documentation and training for your staff, recruitment marketing support, and professional development support for the returners that you hire into your program. 
Contact them Here

Monday, February 3, 2020

More great news  here  about DDX3X Foundation's grant. Thanks to  everyone for getting the word out!

Tuesday, January 28, 2020

Emergency Preparedness

Emergency Preparedness Training for Individuals with Paralysis and other Disabilities
How Prepared Are You? Learn How To Best Prepare for an Emergency!
Wednesday, February 12
10:00am - 1:00pm
Cincinnati Children's Hospital - MOB, 3430 Burnet Ave., Cincinnati, OH 45229
Come join us for an informative session about emergency preparedness for people with paralyis and other disabilities! This training will inform individuals with paralysis and their caregivers about emergency planning. Participation in this training will inform attendees on how to: Identify how to prepare for the 10 Impacts of Disasters, Create an emergency plan with the assistance of a caregiver, and Understand the necessary steps for Sheltering In Place, Community Sheltering, and Evacuating. This interactive session will engage participants in discussion about how preparing for an emergency is specific to each individuals needs and how to best meet those needs.

Social Security Notice

Saturday, January 4, 2020

Another Reason Why We Need Protected Status

Labor Dept Says IEP Meetings Qualify For Family and Medical Leave


Ridofranz / Getty Images Pro

Parents with children in the special education system often struggle to balance work with the many appointments and school meetings kids with disabilities can require. Things just got a bit easier, thanks to a new Labor Department opinion that IEP meetings qualify for leave coverage under the Family and Medical Leave (FMLA).

IEP meetings, or Individualized Education Plan meetings, are normally held once a year to determine the course of special education services a student will receive through the school system. Those services often include therapy prescribed by a doctor like speech, occupational or physical therapy. Since family doctor visits fall under FMLA, it’s logical that IEP meetings should as well. But employers haven’t always interpreted the law that way.

A parent’s presence at an IEP meeting has long been a hot topic in and out of the classroom because IEP meetings can be held without the parent present. If a parent is unable to get time off of work they may feel pressure to let the meeting continue without them, missing out on being a valuable part of their child’s educational plan.

The new opinion helps underscore for employers the importance of IEP meetings. Parents of children with special needs often feel like they are taking more time off work than co-workers. Doctors appointments, therapy visits and school meetings can multiply quickly for children with special needs. The Labor Department’s blessing means parents may feel a bit less guilt in leaving work for yet another family-related meeting.

The FMLA doesn’t cover everyone — but for those covered, the new opinion will bring relief.

Janel Mills, mother of a daughter with autism, is cheering the change. “I’ve always felt conflicted on whether I could take time from work for IEP meetings, or if I would be forced to use vacation time that I couldn’t spare,” Mills says. “It’s great that there’s a clear message to employers that IEPs are critical for parents to attend, and parents don’t have to worry about whether or not they can request the day off.”

Stephanie Giese, a Florida mom with a child who receives special education services, says this shift will improve her family’s involvement in IEP meetings. “We’ve been fortunate that I am able to stay home, but I think this decision is awesome because it will help with the division of labor and bringing more dads or at-work parents into the education process.”

“Often education decisions can fall solely on the at-home parent which builds stress and isolation in a marriage,” Giese continues. “There have been many times I went to IEP meetings alone because my husband didn’t have enough vacation time built up at work.”

For a family whose child is receiving special education services, IEP meetings can be just as important as visits to a doctor or specialist. The Labor Department’s support for parental attendance at these important meetings is a welcome show of support for families who certainly deserve it.

Jessica Watson

Jessica Watson is a freelance writer, author and the blogger behind Four Plus an Angel. Mom to five kids, four in her arms and one in her heart, she tries hard to enjoy them every moment but sometimes dreams of a week alone with a pile of her favorite books. "Four Plus an Angel" -

Tuesday, December 24, 2019

When You're A Frequent Flyer for Guilt Trips

As I'm moving through all the preparations for today, tonight, and tomorrow, I am carrying each and every one of you in my thoughts, heart, and prayers to be kind to yourself. After  finishing up Elisabeth's shower and dressing her just now, I prayed to get rid of this  weight of responsibility I feel for her. I prayed to be released from all the expectations and  guilt of never doing enough for her.   I  prayed for herculean strength to carry on because after doing this for 25 years, there are days I am exhausted, depreciated, and defeated.  And our loved ones, abled and disabled, deserve their dignity and quality life. They deserve the very best from each and every single one of us.  Their needs, their dignity, should not be something that weighs us down but lifts us up.  

Children are a gift to the world and should be treated as such.

Thursday, December 19, 2019

Rock'n' The Waiting Game, Rooms with a View, and Resiliency

Of all the issues Elisabeth is facing, one thing very disabling for her is the cyclic vomiting. Today, she is missing her holiday party with her Metzcor family because of  "it." The signs are yawning, gagging, coughing, and she sweats profusely. It happens spontaneously.  It can happen in a car, it can happen near or far.

Her dad knew the minute she was having another episode when he brought coffee in the room for me this morning.  He  could hear  her bringing up whatever she had left in her stomach and went in to begin taking care of her. I stayed in bed sipping  coffee and stared at the dog who was letting me know it was time for his morning walk.

Fortunately, her stomach is empty,  this time, so the clean up is minimal and I  have it down to an art form  layering the pads on her bed and around her neck.  She's sleeping peacefully now with her little "Mona Lisa" smile after cleaning her bed, showering her up, and wrapping her to rock in the chair to comfort her.

As I am holding Elisabeth's  petit  adult body and smelling her fresh shower scent, my eyes wander over to  my windows filled up with sleepy trees, snow, and sunlight filtering though the remaining needles on  my dawn redwoods. It's a lovely view out my window. It has a healing effect on me..

I am part of nature and this creation and I need to have that bond with my creator --  where it starts and when it ends.  And for all my hopes, dreams,  and responsibilities at hand, I draw my strength and resiliency through my windows.


I begin again. I count my blessings and  new beginnings  each day while rocking Elisabeth in our favorite chair as she begins working through her own  creation and recovery.

Sunday, December 15, 2019

Second Verse, Same As The First...

Today, Elisabeth and I met at church a women who was 51 years old. She reminded me of Elisabeth, just a little. She at least  could use her spastic fist and elbow to communicate by pointing to a word on her tray.  And she had a caregiver who didn't  look much older than her, but I was  later informed  that she was the mother. It threw me off.  Way off.

When Elisabeth is 51, I will be 87 so I had a hard time convincing myself that she was the mother and she was most likely an aid. But, it certainly got my gears going thinking about Elisabeth's  future.  And what it looks like when she's my age. Will I be around? This reminded me about a story my friend was telling me about her young daughter and the caregiving concerns around  their sibling with special needs.  Needs that require 24/7 care like Elisabeth's.   The story goes like this:
When Sarah was about 8 Bill and I were going out of town for a bit. She asked who would take care of Robby (he is 2 years older with many disabilities) when we are gone. I told her grandparents. She said “no I mean when you are gone”. I said I hoped that maybe her and her sister could take turns. Days later she said she wasn’t sure how that would work since she wanted to work at the zoo and Robby would open the doors and let all the animals out. I laughed and cried.

It really puts Elisabeth's  future into an interesting perspective over how much planning is still required. Most families have the same back up plan. In case.  A sibling (or two) will take turns.  Not much of a plan, but we're lucky we can get through the day as it is.

We've talked about a place like St. Joseph's where she would  receive the quality care for which they are known. Marjorie P. Lee is another option because Graeter's ice cream is nearby and everyone loves to visit Hyde Park. So, most likely her family and friends would drop by to take her out.

It's always  a mystery what her life will look like because everything can change so quickly.  No matter what we plan can all change. This has been the trend. Our experience.  Care facilities for adults like Elisabeth lose funding and they shut down or change ownership.   New places start from scratch and eventually, they too, shut down because they are not making a profit. Or, they are forced to make a profit sacrificing the quality care of the residents and hiring employees at low wages.

Elisabeth's new friend and her mother have an interesting  story about their journey together, I'm sure.  I learned what Elisabeth and our new friend had in common -- Redwood Therapy in Fort Mitchell.  Although Elisabeth's new friend attended there as an adult when Elisabeth was just beginning in the infant care area.

But what still threw me off was realizing how old I'll be when Elisabeth is her age. A caregiving reality sank in for me after meeting her  and I am not sure if I'm ready to face it.  Am I even worthy to be her caregiver with all the planning I still  have to continue doing?

It's a circle game. Like Joni's song, we're on a carousel  through time. We can't look back, we can only look behind from where we came and go 'round and 'round and 'round in the circle game.

Friday, November 29, 2019


Today, while I was holding Elisabeth in the rocking chair, with our cheeks pressed against each other in our usual  turntaking  humming song,  I began longing for that child I dreamed about 26 years ago. That child who was floating somewhere in a primative sea of genetic scramble. As I feel her  body occupying that warm embrace that only a mother can provide while  also being weighed down, a child  without DDX3X  genetic coding, ACC and polymicroplegia labeling  begins telling me how much she loves  me, her family, and her life.  She is telling me how  much she loves her dad's homemade ice cream and pumpkin  pie after lunch.  She is telling me that the universe is calling out to all of us in a song of praise and Thanksgiving to anyone open to listen.

Wednesday, October 23, 2019

Told You So...

The wonderful news  for families who have children diagnosed with Agenesis of the Corpus Callosum, cortical visual impairments, cerebral palsy,  developmental delays, polymicrogyria, and autism right is right  HERE in this article. The back story here is that Elisabeth's DNA and many of her DDX3X sisters and brothers have been used in this research after we gave the lab permission 3 years ago so we are thrilled to hear that they finally isolated the location.

Friday, October 4, 2019

Depression in Parents with Children and Adults with Special Needs

Parental depression is a common condition, and for parents of children with developmental disabilities­—both moms and dads—it is even more likely that they will report symptoms of depression than parents of children without disabilities. As providers who care for youth with disabilities, we know how important it is to address parental symptoms of depression in order to support healthy growth and development for children. If unrecognized and/or untreated, parental depression can have a huge impact on how the family functions, and on how a parent and child are able to bond.
Why are rates of depressive symptoms higher among parents of children with special needs?
Although we know that there is an association between depressive symptoms and having a child with a developmental disability, we still have much to learn in order to provide effective and responsive supports to families.
Having a child with a developmental disability can be stressful, even while parents describe it as being rewarding. Some developmental diagnoses are considered life-long chronic conditions that may require ongoing parental support beyond the age that other children reach independence. Children with developmental disabilities may also have one or more significant medical problems that require intensive and ongoing care. Furthermore, many of the therapies recommended for young children depend on parents to implement strategies at home throughout the day, presenting additional demands for parents. Parental depression can interfere with the correct implementation of these interventions, and can even counteract the effects of home-based interventions.
Other factors are at work as well. Financial stressors tend to be higher among parents of children with developmental disabilities, which may negatively impact parents’ mood and well-being. Characteristics of the child, including behavioral difficulties such as aggression, can contribute to the risk of parental depression. And many developmental conditions can affect a child’s ability to sleep independently throughout the night, contributing to parents’ sleep deprivation and exacerbating depressive symptoms.
While many parents of children with a disability experience stigma and frustration with services, the nuances of the parent’s experience can vary greatly across diagnoses. For example, many families of children with autism spectrum disorder (ASD) report feeling isolated, and describe their reaction to a new diagnosis of ASD as a grieving process similar to having lost a child, which can increase depressive symptoms. Conversely, having positive parent-child relationships can protect against depression.
Symptoms of parental depression and a child’s developmental and behavioral problems are likely closely intertwined. Having severe depressive symptoms can affect a parent’s ability to respond to a young child’s needs, putting them at risk for physical and emotional health issues and poor social skills later in life. This highlights the need for providers of children with developmental and behavioral disabilities to assess and support parents’ mental health needs as well.
Recent research results
A recent study at Children’s Hospital of Philadelphia (CHOP)/Penn Nursing surveyed 245 mothers about their depressive symptoms, family functioning (the ability of a family to meet the needs of all family members), self-efficacy (a parent’s feeling of confidence in caring for their child) and child’s behavior. More mothers of children with ASD screened positive for depression compared to moms of children with Down syndrome (Trisomy 21) and children with typical development (24 percent vs. 12 percent vs. 0 percent). Furthermore, 37 percent of moms of children with ASD and 20 percent of moms of children with Down syndrome reported a history of a mental health diagnosis (e.g. depression, anxiety, bipolar) before giving birth to their child. Moms of children with ASD were more likely to report a personal and family history of depression than the other groups.
This research is ongoing, but parenting self-efficacy and family functioning appear to be related to a child’s diagnosis, as well as to symptoms of maternal depression. This suggests that in order to improve parental depression, we need to support parents’ self-efficacy and the family dynamics as a whole.
How can we support families of children with disabilities?
At PolicyLab, we’re looking closely at ways to identify and address parents’ physical, social and mental health needs in order to improve children’s health and well-being. Parental depression goes largely unidentified and untreated, and supports for parents of children with special needs remain limited. Clinicians and pediatric health systems should implement parental depression screening programs in clinical settings that treat children with disabilities and provide resources when symptoms of depression are identified.
Finally, helping parents feel more capable and effective in caring for their child with special needs may reduce the risk of depression. A simple word of acknowledgement and encouragement can make a huge difference for a struggling parent. Enhancing access to increased social supports, through respite services or support groups, may help parents manage their own stress and feelings of isolation. One mom of a child with Down syndrome and ASD described her social network to us as being “worth its weight in gold.” Every family caring for a child with a disability should experience that same sense of support.

Stefanie Zavodny Jackson, MS, RN, is a nurse and PhD candidate at the University of Pennsylvania School of Nursing. She is currently working on her doctoral dissertation, which is a mixed-methods study focused on identifying depression symptoms in mothers of children with autism spectrum disorder, trisomy 21 and typical development, and on characterizing modifiable risk factors for maternal depression in these populations.Depression in Parents with Children and Adults with Special Needs

Wednesday, August 14, 2019

Life Equivalencies and Invisibility Cloaks

I haven't written or added much to this blog in a few years, actually. It all started when I realized that while caregiving for Elisabeth and all her needs, the world was changing in regard to healthcare cost, living expenses,  and I didn't keep up.  When ACA went into effect, for example, things were looking great.  Our premiums decreased significantly from $3,000+ monthly to half of that which was a huge relief for my self-employed husband because we were only drawing one income, had two children entering  college, and we were caregiving for one daughter  at home.

Eight years and counting, the premiums are almost the same, but now we pay for office visits, pharmacy, surgery, etc. And oddly, we have a high deductible for being healthy.    So basically our healthcare is only as good as the next catastrophe that awaits us. Cancer, I hope not.  Alzheimer's?  Please God. No. It's typical for  boomers like me, I think,  to stay ahead of the curve balls  life throws at you.  So here I am, lifting the invisibility cloak of caregiving  and looking for jobs outside the home offering quality healthcare to  hold us over until Mike is ready to sell his business and retire.   The challenge for me is finding new and challenging employment opportunities,  caregiver or not.

Fortunately, for the time being,  I'm working part-time as a sacristan at a beautiful and an architecturally significant post modern chapel on a college campus were I continue observing the uncanny similarities in attitudes, perceptions, and  motivation about why people attend museums and churches.  

It's a lot like working for the  museum where I pursued a career pathway studying why people visit museums in general.   People, you see,  have similar attitudes about why they attend museums and churches.  They want to be visible, validated,  and celebrate their humanity. Both church and museum are community repositories to share  knowledge and fellowship. People  go  to museums and churches because they are passionate, social, curious, and want to live their life to the fullest.  And people young and old  need validation.

Even though it's a part-time job,  it releases me from my life as a caregiver while Elisabeth attends an adult daycare program. Thank God.  She is safe. And a great weight has been lifted.

A sacristan, in case you don't know,  is responsible for the inventory and collection of sacred and secular materials used for mass, sacraments, and faith formation. Having extra  time, I can do other things to make the chapel more homey for both the parishioners and students.  Today for example, as I was updating the student mass schedule handout and making welcome signs for the doors,  I felt a sense of purpose. I felt valued. Appreciated. Challenged.  I felt that inner peace.  A feeling of hope that  no matter what happens, we'll be fine.

It's only until I'm driving home, I start thinking about my future and how absolutely out-of- control it is for me losing my financial independence.  Its  not fair for  one spouse  to bare the sole responsibility of  keeping  a family afloat especially in this day and age.

Recently, I've been  struggling with mortality issues, too,  because I'm in a higher age  bracket and feeling very particular about how I want to spend my time. So I use the length of time of living in my homes -- nineteen years in my current home and 11 years in the previous home-- to calculate how much time I have to live my life while also preparing for Elisabeth's life without me.

Lots of wonderful things happened in the last  19 years. And 11 years before that in our first home where Elisabeth's story begins.  If I'm really lucky, I'll have the combined lifetime of living in both houses and all the joy the last 30 years brought me!

It would be great, too, to be lucky and remain in good health.  And not worry so much.  My point, I guess, is that  I want to enjoy my life and take on a new career outside the home  but I'm feeling the challenge of marketing myself,  lifting my invisibility cloak,  and letting the world know, I am ready. Are you ready for me, world?

What I  want most is quality healthcare to maintain a quality life, but right now, our healthcare insurance from the exchange is   zapping our lifestyle and  depleting  our resources due to the high premiums placing  families like mine  under a different cloak of invisibility.   A cloak that is hiding the fact that great health insurance benefits and low premiums came at the expense of people like me who are paying higher premiums and getting no benefits.

Monday, June 17, 2019

Written by Lydia's Mom Moving Mountains

I knew he was kind, patient, nurturing, driven, intelligent, funny, and dreamy as hell, but I never could have expected what an incredible dad he would be. I met him three weeks into my freshman year of college and after we spoke that first time and I learned that he was studying early childhood education as well, I think my heart just knew he was it for me. I had just turned 18 years old.

He lost his mother, his best friend, at the young age of 20-unexpectedly. She was only in her early forties. I read her cards and notes to him from those beginning college years after she was gone, with his permission of course. They said things on how to treat me, talk to me, how to pick out gifts for my birthday and holidays. She was such a sweet woman. I think about how proud she would be of her son. If she only knew what was in store for him!! I thank his mother and father for bringing this incredible man into the world, and I thank God for connecting our paths. I married him by the way.;)

No one thinks they will have a child with health concerns, or major developmental delays. It’s just not in your parenthood fantasies growing up, or when trying to begin a family. You inhale quickly at those parts of the “babies born with special needs” in the What to Expect When Expecting books, and turn the pages quickly because “that won’t happen to you.” No. No. You fantasize about your child having your love of music and his athletic ability. You’ll work so hard with them on their schoolwork. You can’t wait to raise them with good values and morals. You’ll be diligent in raising a kind child who loves God and helps others to see Him. Your child will make a difference in this big old, often times ugly and scary world. Your child will be the picture of health.

And then you are a parent and you have a child whom the world would not refer to as “a picture of health.” No, something is wrong with her. She’ll be measured constantly in every way: physically, mentally, developmentally, and socially. You may wonder where you went wrong in your role.

In my opinion, the fathers of our children with special needs do not get enough recognition. At least, my hubby deserves a shout out on this Father’s Day, in this space. You guys, he is a reserved, behind the scenes, stoic, rock of a person-the complete opposite of me. Thank heavens!

So daddies. I see you. I see you holding up your wives when they are completely drained and “can’t do this anymore”. I see you hiding your grief, and your crushed dreams because you need your wife to be ok, and currently her tears are soaking your shirt because your daughter can’t do-may never do-what those girls are doing. I see you working to provide and at the same time not wanting to miss one doctor or therapy appointment, one meeting about your child. I see you on the phone working to get hospital bills lowered, even if by a few bucks because anything helps. I see you going over your finances again and again because there are just so many extra costs and then…there is the possibility that your child will always need you to provide for her. I see you jumping in to speak to your child’s therapist, doctor, and teacher about their goals and progression after you’ve had a ten-hour workday yourself.  I see you jump in to home routines and playtime. You are the hero. You.never.stop.

I pray you have an outlet. Do you have a “tribe” like so many of us moms do where you can share your thoughts? I know that us moms can steal the spotlight of articles, blogs, mentor programs and support groups for parents that have children with special needs.  So much “self care” care discussion in our circles. Do you get that? You matter. Your health and happiness matter.

In our tiny corner of the world, no one does it better than you, Erik. First, a father to our beautiful mystery girl, our Lydia, and then a daddy to triplets-all within four years while building a career a, marriage and a home.  Stop being a show off, ok? Happy Father’s Day to you, E! You’re the love of my life.

Happy Father’s Day to all of the amazing dads out there! Happy Father’s day to all of you who are on a parenthood journey that is much different than you ever expected. You’ve got this!! Happy Father’s Day to all the dads who have angels in heaven; you have been on my heart.

And in conclusion, remember those dreams about parenthood?

She loves music and soccer. She is rocking her education, even if it may look a little different. She knows right from wrong, is kind and loves God. She has helped us witness God even more in our daily life, and she is making a difference in this big old, often times ugly and scary world. Thank you for being my partner in that, E.

Saturday, December 15, 2018

So They Tell Us...

So here it goes. I have a breaking point. And so do you. Sure, it's not easy what we do. And people recognize that which is why we always get that one person who comes up to us in the department store or grocery and says, "I couldn't do what you do everyday." 

Some days, I can't do what I'm suppose to do, either.  In fact, there are days I'm just plain lousy at what I do and would be more than happy to leave this disability business behind me.   Some days, I wonder what if I just decided not to do this  anymore, climb down from this pedestal, and pedal off into the sunset. What if I just gave Elisabeth over to the State of Ohio and said, "Sorry, but I can't do this anymore."  That's where my breaking point is, I guess.  The day I operate out of my range of being human.

Remember, people like our children were institutionalized not out of convenience.  People were institutionalized because it was stressful and difficult to keep them at home.  In the old days, when children like Elisabeth were born, your doctor would arrange for your child to be sent to a special home.  They did that because it seemed humanly impossible to be expected to care for your family while also caring for a child with special needs.  And it wasn't that too long ago when  it was suggested to me shortly after Elisabeth was born that I contact St. Joseph's Home.   It was that easy.  

The thought of Elisabeth being anywhere except at home was unthinkable.   She's was  just a little baby. How can you not manage a small, helpless baby?  And the medical issues, I thought, will have to be handled one issue at a time.  Isn't that what people do in the workplace and life in general? Take it one challenge at a time?   

What we do everyday, keeping our children with special needs  at home, is challenging.  It wears on the family dynamic. It wears on the finances.  It's stressful.  It's like living with PTSD. Everyday.  I see that from the newer moms and dads I've met through the DDX3X Syndrome network.  Some of them are hearing  the "news" after missing basic milestones in development.  They don't realize they're grieving because they've already shifted into their survivor's mode. They have to because they're dealing with a little helpless baby.  Period.  But I see expressions of their grief and PTSD   in their vents and rants about this special needs business that intruded on their life like a piano crashing down on their living room.  They come oh-so close to that breaking point.  
When people come up to me, to us, and say what an inspiration we are, here's what I want them to know.  We are in survival mode, everyday, so I need them to advocate for Elisabeth and her friends to be her  personal press agent. I need them to create an awareness about needing more resources, funding, and support for what we do.  We need them to support organizations like Special Olympics, Down Syndrome Network, and United Way.  We need them to support their school districts.  We need them to support organizations that provide early intervention so adaptations can be made to our homes and bridges can be built into the community.  I need  them to contact their governor, senators,  and reps to let them know what we need to keep our children at home and in the community  because not everyone can do what we do everyday. 

Or, so they tell us.

Tuesday, November 27, 2018

Giving Tuesday 2018

The DDX3X Foundation has reached a critical point in our efforts where we have an extraordinarily team of researchers (12 and counting!) focused on curing this condition, but we need more funding to expand our resources. On this special #GivingTuesday, please consider helping us find a cure by donating to the DDX3X Foundation. Because of the leadership of parents, 100% of all money raised goes directly to research. Please join me on my Facebook to make a donation.
Our family thanks you in advance for your love and support on our journey!

Thursday, August 23, 2018

Special Needs

I’ve been at this for 24 years and glad we are having this discussion.

It’s a catch-all phrase “special needs,” isn't it?  It's used for children and adults who are medically fragile and developmentally delayed.  Children and adults, like Elisabeth, who  need  specialized care to perform the basic functions beginning with getting out of bed, toileting, bathing, dressing, and eating. They  need specialized care for mobility,  communication,  and they need specialized care to access their free and appropriate education and they need special care to bridge into community life.

I found the term "special needs" tolerable to the alternative.  For me, it described what she needed to explore every single ounce of her humanity.   Her diagnosis at birth was a long  list that included both  severely “mentally retarded” and severely  "multiple handicapped" due to the fact that half of her brain did not develop.  She is special needs because she is impaired.

What should be concerning for all of us is how our  children are received, welcomed, and respected into the world whether they are entering a classroom as a preschooler or bridging into community life later  as an adult.   We can’t let words get in our way when she is facing  bigger barriers on a daily basis. The barriers that separate her from her abilities and disabilities.  A world that defines her quality and purposeful  life based on her  special needs.