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.
Saturday, December 15, 2018
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.
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.
Wednesday, May 9, 2018
DDX3X Gene Mutation and Finding Hope in the X Factor
Elisabeth's global delays, we've learned recently, were all caused by a mutation in a gene identified as DDX3X. I think the scientists are just now putting the puzzle together with all their findings going back to 2015.
We are also learning that Elisabeth is among a small group of girls who were found with this same mutation. So. We're not alone. And, there may be a tie in to ASD.
Now how's that for news?
The best news of all is finding friends, articles, and blogs that speaks "diagnosis" because when people asked me about Elisabeth's diagnosis, my mind went blank. Where do we being? That delay in development that separated Elisabeth from her typical developing peers. That thing that radically changed her life and the person she was imagined to be.
Where do I start?
I was always nervous rattling off the symptoms, not the diagnosis. Did all these symptoms really define her? The Agenesis of the Corpus Callosum, optic nerve atrophy, spastic quad, CP, and the string of other things written down on medical forms throughout her 24 year old life, over and over. Is this who she is? And how do you explain mutation? The billions of letters of DNA in which one letter doesn't copy because of this thing called "protein" which is essential to all development of life on our planet. Is she a tiny mistake in nature due to tiny error rate?
I've been writing this blog to document Elisabeth's journey. It's a true story about our daughter Elisabeth. A story about Elisabeth exploring every ounce of her humanity. I also wanted to document my own discovery of her humanity instead of seeing her as a mutation or a disabled person with special needs. My role as her advocate and caregiver was and remains to make sure this very messy and complicated life doesn't spiral out of control.
It was this blog that I tried to jot down and link up to any person, article, or information that would help me create her niche, her community, and her purpose in life.
Several years ago, I wrote this article called the "X factor" that helped me discover the connection I had to make as her mother and the connection she had to make with the rest of the world:
"For parents and caregivers with children who are born with disability labels or who develop a label after birth, it seems impossible finding that particular child matching up to their own child in ability and development. The milestones, the charts, and the sequence in development is not there for our children.
All we really have have to go on is our own X factor. The factor we discovered in hindsight creating that emotional bond that defined for us a fleeting but tangible smile to mean a "yes" or a flinch in eyebrows to mean a "no.""
We are also learning that Elisabeth is among a small group of girls who were found with this same mutation. So. We're not alone. And, there may be a tie in to ASD.
Now how's that for news?
The best news of all is finding friends, articles, and blogs that speaks "diagnosis" because when people asked me about Elisabeth's diagnosis, my mind went blank. Where do we being? That delay in development that separated Elisabeth from her typical developing peers. That thing that radically changed her life and the person she was imagined to be.
Where do I start?
I was always nervous rattling off the symptoms, not the diagnosis. Did all these symptoms really define her? The Agenesis of the Corpus Callosum, optic nerve atrophy, spastic quad, CP, and the string of other things written down on medical forms throughout her 24 year old life, over and over. Is this who she is? And how do you explain mutation? The billions of letters of DNA in which one letter doesn't copy because of this thing called "protein" which is essential to all development of life on our planet. Is she a tiny mistake in nature due to tiny error rate?
I've been writing this blog to document Elisabeth's journey. It's a true story about our daughter Elisabeth. A story about Elisabeth exploring every ounce of her humanity. I also wanted to document my own discovery of her humanity instead of seeing her as a mutation or a disabled person with special needs. My role as her advocate and caregiver was and remains to make sure this very messy and complicated life doesn't spiral out of control.
It was this blog that I tried to jot down and link up to any person, article, or information that would help me create her niche, her community, and her purpose in life.
Several years ago, I wrote this article called the "X factor" that helped me discover the connection I had to make as her mother and the connection she had to make with the rest of the world:
"For parents and caregivers with children who are born with disability labels or who develop a label after birth, it seems impossible finding that particular child matching up to their own child in ability and development. The milestones, the charts, and the sequence in development is not there for our children.
All we really have have to go on is our own X factor. The factor we discovered in hindsight creating that emotional bond that defined for us a fleeting but tangible smile to mean a "yes" or a flinch in eyebrows to mean a "no.""
Wednesday, March 21, 2018
".... and it was hard to get him to do things."
My heart goes out to this mother who put her trust in staff working at an adult daycare in Cincinnati. Shee thought the staff were experienced at caring for her son with autism.
The only thing that RMS got right in the article is how challenging it is caring for a child or adult with severe delays in development (which is why they are placed in a special workshops and care centers.)
RMS, according to their mission, is a "family of human service organizations providing residential, vocation, and recreational support to individuals with developmental disabilities."
What surprises me is that no one at RMS communicated their concerns to the mother beforehand about his behavior. It was only after she went to the press that suddenly there was an issue with his behavior. If he fell, it should have been documented. If there was an issue, it should have been documented.
Aren't they suppose to be the experts?
One thing to look at before considering a respite or day center is to ask about the experience and training staff have with adults who are on the spectrum. If your son or daughter is on the spectrum, you want someone who has experience so they can avoid the triggers. You don't want them endangering themselves or others, so what kind of protection services for clients mixed up with other clients with behavioral plans?
If there is a behavior plan, for example, ask what staff know about avoiding triggers without impacting quality, purposeful, and dignified care.
My experience with respite, leisure, and recreational care is that there are some really awful places out there in Cincinnati driven solely for profit. I mean, "run, don't walk" awful.
Make sure you go with a respite or day care with a really good reputation. Redwood Therapy Center in Northern Ky, St. Joseph's, Stepping Stones, Metzcor, Sunny Spot, and ABS are a few to name off the top of my head. These are the places that repeatedly come up in community conversations about offering quality care. They hire staff with experience so they know how to guide behaviors that can be difficult. They will communicate with parents/caregivers daily about any unusual behaviors they see developing in your son or daughter. They will be concerned because they care about what kind of day your son or daughter is having away from home.
What do you look for?
Look to see what the adults are doing throughout the day. Are they guided through activities based on their abilities?
Ask about the experience the staff have with the population of adults with special needs and on the spectrum. Where did they get their training?
Observe how they are touching clients. Are they grabbing arms or gently guiding?
What are you hearing? Kind and calming language?
Is the room welcoming? Do you see cabinets with activity bins, games, and adaptive equipment? Are there tables and comfortable chairs?
Most importantly, do you see staff directly working with clients in small group activities?
How many staff are in the room directly or do they count "staff" who are in the offices or on the premises?
Ask staff directly how long they've been working there?
High staff retention is a good thing. The more staff you see around the room working or guiding clients, the better the organization.
It's really important that you drop in as much as you possibly can. Even if it's just for a minute to say hello and see what they're doing.
Sure, things are not going to be perfect. But, anytime you drop in, you should see your loved one doing something meaningful with a group that is guided by a staff.
It should feel and look like they are being welcomed and in the best of care.
It's what they deserve.
The only thing that RMS got right in the article is how challenging it is caring for a child or adult with severe delays in development (which is why they are placed in a special workshops and care centers.)
RMS, according to their mission, is a "family of human service organizations providing residential, vocation, and recreational support to individuals with developmental disabilities."
What surprises me is that no one at RMS communicated their concerns to the mother beforehand about his behavior. It was only after she went to the press that suddenly there was an issue with his behavior. If he fell, it should have been documented. If there was an issue, it should have been documented.
Aren't they suppose to be the experts?
One thing to look at before considering a respite or day center is to ask about the experience and training staff have with adults who are on the spectrum. If your son or daughter is on the spectrum, you want someone who has experience so they can avoid the triggers. You don't want them endangering themselves or others, so what kind of protection services for clients mixed up with other clients with behavioral plans?
If there is a behavior plan, for example, ask what staff know about avoiding triggers without impacting quality, purposeful, and dignified care.
My experience with respite, leisure, and recreational care is that there are some really awful places out there in Cincinnati driven solely for profit. I mean, "run, don't walk" awful.
Make sure you go with a respite or day care with a really good reputation. Redwood Therapy Center in Northern Ky, St. Joseph's, Stepping Stones, Metzcor, Sunny Spot, and ABS are a few to name off the top of my head. These are the places that repeatedly come up in community conversations about offering quality care. They hire staff with experience so they know how to guide behaviors that can be difficult. They will communicate with parents/caregivers daily about any unusual behaviors they see developing in your son or daughter. They will be concerned because they care about what kind of day your son or daughter is having away from home.
What do you look for?
Look to see what the adults are doing throughout the day. Are they guided through activities based on their abilities?
Ask about the experience the staff have with the population of adults with special needs and on the spectrum. Where did they get their training?
Observe how they are touching clients. Are they grabbing arms or gently guiding?
What are you hearing? Kind and calming language?
Is the room welcoming? Do you see cabinets with activity bins, games, and adaptive equipment? Are there tables and comfortable chairs?
Most importantly, do you see staff directly working with clients in small group activities?
How many staff are in the room directly or do they count "staff" who are in the offices or on the premises?
Ask staff directly how long they've been working there?
High staff retention is a good thing. The more staff you see around the room working or guiding clients, the better the organization.
It's really important that you drop in as much as you possibly can. Even if it's just for a minute to say hello and see what they're doing.
Sure, things are not going to be perfect. But, anytime you drop in, you should see your loved one doing something meaningful with a group that is guided by a staff.
It should feel and look like they are being welcomed and in the best of care.
It's what they deserve.
Saturday, March 3, 2018
Three's a Charm
Elisabeth came into the world with a 5 year old sister who was just starting kindergarten and just learning about her new and very fragile baby sister. She was ready for Elisabeth and had "Big Sister" training and a t-shirt to prove it. Elisabeth also is three years older than her baby sister. She was the baby sister who put Elisabeth into giggles when she cried and the baby sister who insisted on pushing Elisabeth's wheelchair as they got older.
When we talk about future caregiving for Elisabeth, both of her sisters say without any hesitation they will take responsibility. The idea that Elisabeth would live anywhere except with her own family is beyond their scope of understanding. They think this way because they know the way of the world. Both sisters spent a few years working with marginalized populations transitioning into the community. From their perspective, they think they can manage the caregiving responsibilities while also having their own careers as long as there are quality day facilities and community programs that parallel their working hours. As long as Elisabeth has access to funding.
For most of their childhood, I stayed home. I realized I couldn't "have it all" working outside the home and had no other options left because Elisabeth was aging out of her specialized daycare at Redwood Therapy Center and was ready for the school district and the world of IEPs, FAPE, and LRE. Elisabeth's needs grew beyond what I could do working full-time away from the home. She wasn't sleeping. She was requiring extra trips to the doctors, surgeries, therapies, and we didn't have the resources to hire a helper or nanny to care for her while I was at work.
It was a charmed life staying home. Elisabeth's dad seemed to be more relaxed knowing there wouldn't be anymore interruptions at work. And his job changed so he could have a little more flexibility as my back up. It was almost perfect, really. It was like all those prayers that people say on Elisabeth's behalf were all working. The girls all found their niches -- art club, music club. band, theater, soccer, softball, basketball, track, scouting, band, cheerleading, and community service clubs. Then they said goodbye to Elisabeth and went off to college to earn their degrees and their place in society.
Then, somewhere in this charmed fairy tale existence, things went awry. Suddenly the wear and tear of caregiving started showing and I found myself hanging from this very thin thread about to snap. The reality of her leaving her school community sunk in. The truth is, it's not easy being a caregiver full-time. So, when I started looking at her life after graduation, I began seeing the same anxieties and stresses that I see in other families like our own. We don't have to say a word because we know that "I know" look. We know. We can't do it on our own. We need help.
Today, I am scheduling a meeting with a reputable respite care center for adults like Elisabeth. I've watched other very strong and capable warrior moms do the same. It's hard. I'm making plans for Elisabeth's future because she needs her own independence. She needs to find her own niche and get acquainted with the staff and activities to bridge into community life. And her sisters need an option for Elisabeth, too. It's just something I know I have to do for all three of my daughters because I know the way of the world, too. And the way of the world for Elisabeth is that she needs her own community.
As long as we have funding for quality day and overnight respite facilities like Metzcor, Stepping Stones, and St. Joe's that are run by quality skilled-nursing and tender-loving care, I think Elisabeth will be just fine on her own when her dad and I age out of our caregiving responsibilities. Her sisters will still be part of her life and community bridge building, but they won't have to do it on their own.
When we talk about future caregiving for Elisabeth, both of her sisters say without any hesitation they will take responsibility. The idea that Elisabeth would live anywhere except with her own family is beyond their scope of understanding. They think this way because they know the way of the world. Both sisters spent a few years working with marginalized populations transitioning into the community. From their perspective, they think they can manage the caregiving responsibilities while also having their own careers as long as there are quality day facilities and community programs that parallel their working hours. As long as Elisabeth has access to funding.
For most of their childhood, I stayed home. I realized I couldn't "have it all" working outside the home and had no other options left because Elisabeth was aging out of her specialized daycare at Redwood Therapy Center and was ready for the school district and the world of IEPs, FAPE, and LRE. Elisabeth's needs grew beyond what I could do working full-time away from the home. She wasn't sleeping. She was requiring extra trips to the doctors, surgeries, therapies, and we didn't have the resources to hire a helper or nanny to care for her while I was at work.
It was a charmed life staying home. Elisabeth's dad seemed to be more relaxed knowing there wouldn't be anymore interruptions at work. And his job changed so he could have a little more flexibility as my back up. It was almost perfect, really. It was like all those prayers that people say on Elisabeth's behalf were all working. The girls all found their niches -- art club, music club. band, theater, soccer, softball, basketball, track, scouting, band, cheerleading, and community service clubs. Then they said goodbye to Elisabeth and went off to college to earn their degrees and their place in society.
Then, somewhere in this charmed fairy tale existence, things went awry. Suddenly the wear and tear of caregiving started showing and I found myself hanging from this very thin thread about to snap. The reality of her leaving her school community sunk in. The truth is, it's not easy being a caregiver full-time. So, when I started looking at her life after graduation, I began seeing the same anxieties and stresses that I see in other families like our own. We don't have to say a word because we know that "I know" look. We know. We can't do it on our own. We need help.
Today, I am scheduling a meeting with a reputable respite care center for adults like Elisabeth. I've watched other very strong and capable warrior moms do the same. It's hard. I'm making plans for Elisabeth's future because she needs her own independence. She needs to find her own niche and get acquainted with the staff and activities to bridge into community life. And her sisters need an option for Elisabeth, too. It's just something I know I have to do for all three of my daughters because I know the way of the world, too. And the way of the world for Elisabeth is that she needs her own community.
As long as we have funding for quality day and overnight respite facilities like Metzcor, Stepping Stones, and St. Joe's that are run by quality skilled-nursing and tender-loving care, I think Elisabeth will be just fine on her own when her dad and I age out of our caregiving responsibilities. Her sisters will still be part of her life and community bridge building, but they won't have to do it on their own.
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