Every week or so my messenger app dings with a message from someone reaching out. Often it’s a question; someone looking for input or encouragement, asking advice or giving any of the above. Sometimes it’s a local friend, often strangers find me via Google or an article and seek me out.
No matter who it is or what the reasoning, I welcome it.
I’ve noticed a few things as well. Though I’m reluctant to generalize, there are some threads common to many of these families.
- We’re dedicated. Whether it’s helping a child with ADHD or dyslexia succeed in a general classroom, finding a niche for a child with Asperger’s (yes, I know it’s technically not called that anymore) who is gifted, making plans for a child with a complex medical diagnosis or finding the right fit for someone with a developmental disability; families are bound and determined to do right by their kids.
- The resources aren’t readily available. This many years after IDEA and ABLE, it’s still hard to find and create resources for people who need any services or aids outside the norm.
- We’re tired. We struggle to find child care or respite, we spend untold hours driving to and attending appointments and meetings, we often are years or even decades behind on sleep, and we’re often trying to brainstorm, troubleshoot and solve behaviors.
- We’re broke. Between copays, deductibles, and gas, our money flies out of the bank account with extraordinary speed, and it’s not from being irresponsible. In fact we often feel guilty for small indulgences that many people take for granted because we know that the $2 we dropped on coffee is $2 less we can pay on bills.
- Despite all that we’re usually grateful. We realize that the services we can access for our kids are unprecidented, and though we struggle to make it all work, we do so gladly!
- We’re an unparalleled network. We find each other, we support each other, we advocate together and encourage each other. It’s a worldwide commune where people gladly share anything they have, eager to help one another out.
- We have a vision. It starts with our desire to make the world a better place for our children, and a recognition that our children make the world a better place. And we’ll go to the end of the world to bring it to fruition.
What would you add?
Many bloggers take great care to avoid showing their children's faces, to keep a modicum of privacy for their families. They make up blog names for their kids and keep the family's identity anonymous. I get that, the Internet is far from safe, people steal photos of children and use them for rotten purposes. It seems that it's foolish to churn out photo after photo of my precious brood.
But I do.
It's because I want you to see them, to really see my kids.
I want you to get used to their features; those almond shaped eyes and small mid face that are the hallmarks of Down syndrome.
I want you to see their humanity, their preciousness, and to recognize them as the multifaceted, complex people that they are.
Alex was stared at yesterday. Blatantly, unavoidably stared at for several minutes yesterday. I'm sure it's because he wears his diagnosis on his sweet face. Anyone who might not be familiar or comfortable with Down syndrome will see his differences and not be able to stop examining him in order to perhaps put a finger on just what is different about him.
I want a world where every single person can look at someone with a disability and see the human being, not the difference.
By my sharing of photographs and our daily ups and downs, I hope to give insight that will facilitate that. I want people to understand that my children are as adorable and adored as any other child, and also to realize that there are differences and challenges; both for them and for us as parents and caregivers.
This is all my bodacious effort to make the world a place where they are accepted.
How can I do that if you never see their faces?
I know that some will disagree, and I'm okay with that. In fact I'll gladly listen to any dissenting voice. I've never claimed to have all the answers. I'm just doing everything in my power to make the world a safe, accepting, and welcoming place for my children.
Something many parents get to take for granted.
Tomorrow morning a social worker is coming to our house so we can formulate Ben’s plan of care for the Children’s Waiver Program. This is a day I have waited, hoped, and fought for for years.
I’m going through the motions, cleaning the toilet, vacuuming the floor, and closing the shower curtain because the social worker had no business in my shower anyway. All the while I’m fully anticipating a disastrous event just as she pulls into the driveway that will leave me mortified, and last, but not least, I’m noticing a fishy smell in the house that I can’t track down for the life of me.
I finished the pre-approved paperwork to enroll Ben in Medicaid this evening, and in so doing, I’m busting some of my own myths about Medicaid.
- I always believed that help for people in need or with disabilities was best rendered privately, by charities and churches. But this report shows how absurd that notion is.
- I always believed that Medicaid was for able bodied people who chose not to work, but it actually grants coverage to many elderly people, children, and people with disabilities.
- I always believed that Medicaid was just medical insurance. However, Medicaid covers many programs and supports for disabled people that medical insurance doesn’t.
- I always believed that Medicaid was wasteful and exorbitant, but Medicaid is actually pretty thrifty for a government program.
- I always thought I would be ashamed to receive government assistance for my family. I’m actually relieved. By getting these supports, Ben will be able to remain in our home, something we have doubted many times because his care is so complex. Seeing as how in the recent past, most people with disabilities lived in institutions from a very young age, I see keeping people with disabilities in the home and the community as a wise investment that is worthy of taxpayer support, and they have the right, granted by SCOTUS, to do so.
I don’t know the details about the BCRA (nobody does), but I do know that cuts to Medicaid would weaken the supports that keep people with disabilities in the our country safe and healthy in their homes. I consider this a worthy and valuable use of public funds. I recognize that the ACA has many issues and needs reworking, but we must protect Medicaid, and the people who need it.
Now I’m off track down and eliminate that fishy smell.
When people think of Medicaid, they think medical insurance. Medicaid is insurance, which is important, to be sure, but it is also is so much more.
My husband works for the state, he has a good healthcare policy, so while medical expenses do add up, we have a safety net to ensure that we won’t have to succumb to the financial strain of medical bills. Even so, I fought a huge battle to get Ben onto the Children’s Waiver program so that he could get Medicaid benefits even though our income (my husband is in law enforcement, and I make a little money here and there with writing, so we aren’t exactly rolling in it) is above the threshold for our disabled children to receive Medicaid. Here is a list of things that Medicaid provides that we couldn’t provide in another fashion or which has been burdensome to provide.
- Respite. We have had friends occasionally volunteer to care for Ben, and my mom helps out as much as she can, but that said, in order to have regular breaks from caregiving, we would need to pay an adult caregiver at least $15/hour (that’s on the stingy end of the spectrum), if not more to care for Ben. Why? Because he’s catheterized for urine, has bowel flushes, gets meds 3x/day, and has violent outbursts that require cautious intervention. Respite means that we can have a professional caregiver who is equipped to do those things and we can give much needed attention to our other children, and just get time to collect ourselves so that we can continue to give high level care.
- Community Living Supports. I have written about taking Ben out in public, it’s a crapshoot at best. It is guaranteed that he will have minor issues, such as running off or taking things off store shelves, but there are times, about 50/50 that things are trickier and the interventions for such behaviors result in a major meltdown. Community Living Supports will provide a trained person to help Ben learn to cope with going out and all that it entails, giving him a fuller life where he will be less isolated, especially if his behavior improves and we can take him on family outings.
- Autism benefits. ABA therapy, which will also help minimize Ben’s negative behaviors and maximize positives.
- Medical copay/deductible coverage. As I have said, we have good medical insurance, but every single year Ben maxes out his copays, deductibles, and out of network costs. It’s thousands of dollars. Anyone who has a typical family knows what it’s like to have a major surgery, hospitalization, or ER bill suck your savings dry. For us, even though we plan on it, and max out our flexible spending account, we still also have enough expenses, over and above what we have set aside in our flex spend, to be a budget buster. Every, single, year.
- Incontinence supplies. Ben is incontinent of bowel and bladder. Even though we catheterize him, and flush his bowel, his incontinence is severe enough that he must wear briefs in order to avoid soiling his clothing. This is another budget buster, and another item that Medicaid will furnish for him.
- Psychiatric care and counseling. As well as other mental health benefits.
This is what will benefit us. It’s no small list. Additionally, Medicaid pays for school therapies, and many more services that will help Ben transition to adulthood with the supports he needs.
While we have always just used Children’s Special Healthcare Services, which covers some, but not even close to all, of Ben’s medical expenses, and paid the rest, it will be an enormous relief and benefit to alleviate that financial strain and hopefully have a savings account that won’t take constant hits. But that’s just the icing on the cake. What we really need is the wraparound supports that Medicaid, and Medicaid alone, can provide. It will benefit every member of our family, and maybe, just maybe, we’ll be able to breathe again. I wonder if we remember how…
Welp, here it goes. I can’t be silent. I reviewed the Senate Healthcare Bill, and it affects my son. I don’t know if my blogging does a darn thing, but I believe I’m obligated to advocate for my child. As such, doing what I can to ensure that people are aware of the ramifications of this bill and asking those who care to make their voices heard, is the least I can do.
For the sake of brevity, I will keep this to the two factors which have the greatest impact on my child. The photos below were taken from an NPR summary of the bill.
Many people think that Medicaid is a hand out to able bodied people who choose not to work. However, around 90% of Medicaid dollars go to the elderly, disabled or working people whose income falls below the threshold in their state. Therefore, reduced funding to the program hits heaviest on the most vulnerable populations. As adults, both of my sons will rely on Medicaid for their medical coverage. It’s not exactly clear what these cuts will mean to them, and perhaps that’s the most worrisome part of this. Alex might be just fine if he stays healthy, but Benjamin’s health needs are lifelong. If he cannot stay on our healthcare plan, and Medicaid is cut, what would the options be? Nothing here is clear, and for families like ours it’s terrifying.
This part is even more harrowing. In addition to his developmental and medical needs, Ben has serious mental health needs. He sees a psychiatrist, uses psychiatric medicine, and needs autism therapy, which is a mental health benefit. Without these in place, his wellbeing is in jeopardy. I cannot overstate the seriousness of this situation. As it is, resources for people with developmental, medical and psychiatric needs are sparse, if funding is cut, it would be nothing short of devastating for Ben and our family.
But we aren’t the only ones. In fact, we’re pretty fortunate so far. Mike works for the state and has his choice of excellent healthcare plans, of which we have chosen the most thorough and economical coverage. Many are self employed without access to such benefits. For us, the cost of healthcare thus far has been a strain, but one that we can manage. For many, it’s already past management and only set to get worse, highlighted in this Washington Post article.
Look at smiling 12-year-old Parker from Utah, who needs a feeding tube, an aspirator, a trach and loads of medication to survive. One drug costs $100,000 a year. For a while, his family relied on food that neighbors left on their doorstep because Parker’s medical bills were so high after their health insurance capped out.
I’ve followed Parker’s story for years now, and his family deserves better. They’re working hard, being resourceful, and just want their son to live!
Here’s the thing, we have spectacular medical science that’s evolving and growing daily. We are able to save lives that just a few years or decades ago were hopeless. It’s marvelous, simply marvelous. But it’s expensive, as would be expected, too expensive for any but the wealthiest citizens to afford. Do we reserve such marvels for those who can afford to buy it? Is modern medicine a luxury for the few? Is it a commodity available to only those who have the cash reserves to pay for it?
How do we decide who gets this care? Do we deny children whose parents don’t have jobs with a hearty benefit package? Or do we put caps on it and say we can only spend so many dollars to save a person’s life, and after that just shrug it off? Or do we leave people with mental illness without access? This is dangerously close to eugenics. I shudder to think that denying Medicaid coverage for mental illness is a tidy way of saying society shouldn’t be obligated to help them.
Finally, I want to point out that it’s the “pro-life” party that is endorsing all of this, and I’m calling bullshit. There is nothing life affirming or life-protecting about any of this. This is prioritizing finances over people and it’s repugnant. If you suggest that charities or churches should fill in the gaps, please just get off that ridiculous notion. In eleven years of managing complex medical, developmental and psychiatric needs, we have tapped into private resources to a great extent, I’m quite savvy at finding and accessing them, and we have had a church with a congregational care employee who identifies and designates church resources for families in crisis. Between the two, the help has been incredibly helpful for certain things, but only a drop in the bucket compared to the day to day impact of copays, deductibles, time and miles. It’s simply not feasible for private organizations to offset such monumental costs.
So I ask you, do you really think it’s okay for people to suffer and die when medical care is available, but not affordable?
Every once in awhile, when scrolling through Facebook, I see something that drops my heart into my stomach. Today, it was an article about a murder-suicide. The victim was Grant, a young man with CP who was nonverbal and wheelchair bound. The co-victim was his father. A school principal, and special needs advocate. The theory is that the strain of caregiving caused the father to snap.
I pass no judgement on him.*
The strain of caregiving is colossal. Love is not enough when days and weeks of being overextended turn into years and decades. And even more so, the heartbreak of seeing your child suffer. When Ben is having a bad day the heartbreak of enduring it with him is immense. Some days it’s easy to sink into the abyss of wondering how long it will last; to blame yourself for the circumstances, and to succumb to the inescapable feeling of your child’s struggle.
Especially when help is almost impossible to access.
Caregiver fatigue or burnout is a serious concern for parents of children with disabilities, yet if you Google the term, you find resources from the AARP, ALS, Alzheimer’s and dementia sites, etc. In other words, caregivers are identified as caring for the elderly, not for their children.
Furthermore, articles place the impetus for resolution for caregiver stress square on the head of the caregiver herself. Yep, not only do parents have few resources for respite and help, but when we’re overextended in caring for our beloved children, we have to rescue our own selves, as if we wouldn’t have done that in the first place if there were reasonably accessible ways to do so. Getting respite for a child with complex medical, developmental or behavioral needs is outrageously complicated, and if you happen to be above a very low income threshold (just above poverty level), there’s zero help whatsoever in getting it. And as for hiring a “mother’s helper”, I’m pretty sure no mom on the planet wants their precious tween to be hanging out here when Ben smashes a plate, breaks my glasses or damages my wedding ring (all of which have occurred within the past 24 hours).
Let’s be realistic here! Parents of complex kiddos, even those who have decent support systems, are barely keeping afloat, and some just plain aren’t. We’re falling between the cracks because there aren’t that many of us and because we’re too damned busy caring for our children to get the help we need.
The point of all this? As a full time caregiver, and acquaintance with many others who are in similar shoes, I’m asking you to stand in the gap for us. Call your state and national politicians, and ask them to make access to respite and wraparound services easier for parents of children with serious disabilities. Or, just sign this petition.
We have to do better. For the children and the parents.
*Please know that I don’t think murder-suicide is ever okay, and I certainly never want to see it happen under any circumstances. I’m simply saying that humans can only endure so much before snapping.