How One Special Education Teacher Found Respite Care for Her Own Special Needs Son During an Emergency
5/28/2019
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My husband and I are feeling pretty lucky right now.
Last Friday, my husband, a 24-year paramedic, had a significant cardiac episode.
Here's where the luck comes in: he had just finished transporting a patient to the emergency room at a hospital in the Mississippi River Delta region of Missouri.
A long way from anywhere, a helicopter ambulance crew just HAPPENED to be in the emergency room to pick up a patient.
When the flight crew saw my husband, they put him immediately on their gurney and made arrangements for the person in need of non-emergency transport that they had originally shown up for.
So Now What Am I Supposed To Do Vs. What I NEED To Do
Then they called me.
I have never felt quite as helpless ever before in my life. The only thing that brought a little peace was knowing that the nearly 2 hour drive to our "big" city hospital (by big, I mean a town of 70,000 people) had been whittled down to a 35- minute flight.
I needed to get there, and get there FAST but what I HAD to do was make sure we had care for our other guy - my son with Down's Syndrome. I HAD to ensure our young man, who was sleeping so soundly in his bed at home, would be cared for while I was away because in the case of our family, our guy cannot be left alone.
Doing the Right Thing and Doing the Right Thing
If my life were different, I would have jumped into my car, started calling our adult children, and telling them the situation.
It would have been just me who needed to get changed out of her Friday night uniform of pajama pants, a whole-filled t-shirt, and hair clipped back.
Instead, my first thought couldn't be my husband. Instead, I first had to focus on the truly immediate need: securing care so I could be with my husband.
So Now What?
Two months ago, I wouldn't even have been able to GO to the hospital at all. Our guy is terrified of hospitals for various yet specific reasons.
He doesn't like the smell. He doesn't like the memories. He thinks of pain. He thinks of IV's, too much medication, difficulty breathing, his Daddy sleeping right beside him during the entire stay.
He doesn't want to even think that his beloved Daddy may die. I'm not sure he can even comprehend that thought or concept.
If he were to see Daddy in a hospital NOT in the role of paramedic, our guy would react beyond anything I care to imagine.
We are not from the community in which we live. We are not from the state in which we live. My son has adult siblings that are married with children, they only live an hour away; they do not help.
They do not offer.
But they DO post their sibling's picture on social media during Down's Syndrome Awareness Month with statements about how much they love spending time together with him.
Hmm.
Finding Great Support
All the typical avenues for support are dead-end streets for our little three member household and so we have sought out other sources and resources. Through a lot of sleuthing and living-of-life, I wanted to share some ideas to support others:
- Ask around. Our guy attends an adult day treatment program for people with disabilities. He goes daily, Monday through Friday, for the entire day. One of the volunteers at his school has proven to be a wonderful resource for us as her schedule permits.
- Connect with local/national disability-specific organizations. In many cases, they can connect families to local groups which have leads for quality care-giving.
- Places of worship: there are loads of congregations which have support groups for families/people with disabilities. There are many which offer cooperative-type care-provision (you support me, I'll support you) and networking opportunities which may lead you down the desired path.
- Your state Department of Human Services: for many families discovering their loved one qualifies for personal care hours and/or respite care hours is news most welcomed! Care for families that may have once been paying out-of-pocket is now available at no charge to them, just as it would be for a person with disability insurance. There is a TON of paperwork and visits by agencies but it is time well-spent (in my opinion).
- Social media. There are numerous groups on the blue-bannered social media site which are relevant and related to local communities' special needs population. Before I'd entrust my own kid to the care of someone I met there, I'd be SURE to do all my due diligences in a big, hard way but I'm all about building a community of friends who share life situations with me. It is time well spent to grow friendships and positive relationships with other families. Sharing a picnic and playtime in a park with people you care about is a lot more fun!
If I'm going to be a champion of full-disclosure and honesty, like I work diligently to be every single day, I'm going to share with you the list of emotions I feel when we need to find care for our guy-even to sneak out for an hour alone-but CAN'T:
- Anger
- Frustration
- Rage
- Hurt
- Grief
- Disgust
- Feeling of being disrespected and disregarded
- A bit nutty for feeling the way I feel
- Alone
- Unloved
Do these feelings necessarily mean that's how the situation actually IS? Probably not but in that moment of disregard, yes. All those emotions take their turn at binge-eating at my good will toward others. But we all know that emotions aren't always drawn from our most rational mind-space; be that as it may, they definitely are real, raw, and make their presence known.
But what matters most is how we rein them in. Again, being honest, we HAVE to remember to separate the issue from the person. It's not the person with the disability's fault that we can't find care. Not even sorta. Not an iota. Not a skiff. Not a teeny weeny eensy bit.
What have I learned through it all? Ready?
It just is what it is. My reaction is what is going to make or break the situation.
There. That's your nugget.
Keeping It All Together: Is That Even a Reality?
Pay special attention to the image in this section. The poor guy with his head on the computer looks exactly as I often do-he's trying. He's REALLY trying, yet through no fault of his own, the system in place will, occasionally, collapse.
As I write this, our new'ish caregiver has failed to show three mornings THIS WEEK. Circumstances at home were legitimate for the person, but no phone call, no text, no flare, no note by carrier pigeon, no smoke signal, no replacement, no nuttin'.
If you know your Math, you know that three creates an average See where I'm going?
No, you don't.
You might think, well, why aren't you going to fire that person you rely on to get your guy up, out the door, and on the bus to his day program each day of the work week so you can get ready and be at YOUR job on time?
Quite simple, really: we have no one else we can rely on.
I was chatting with my bestie about the whole situation this morning. She, too, has a child with disabilities. Her guy is of elementary school age. He requires constant supervision-and always will. Same as us, except for our guy is older.
Her son receives Applied Behavior Analysis therapies, both at home and at school.
This is a very structured program that teaches children with Autism appropriate behaviors. This is done in a manner which requires consistency, attentiveness, and chronic repetition.
Her little dude's therapist didn't show up yesterday, either. No phone call, no text, no flare, no note by carrier pigeon, no smoke signal, no replacement, no nuttin'.
What happens when they don't show up for therapies and educational programs like ABA which revolves around consistency?
I'll tell ya what happens when caregivers don't show up or have adequate substitutes: the day falls apart for all family members because the person with disabilities has just had their world rocked to the core.
The end.
Yep, it's that simple. There is hell to pay for those of us who are the families. Again, it's not the person with the disability's fault that we can't find care. Not even sorta. Not an iota. Not a skiff. Not a teeny weeny eensy bit.
Forge Ahead, Soldier
Not only is our lifestyle one of "it is what it is," but when things go awry, we just have to tell ourselves to keep on truckin'.
For a parent of a son or daughter with special needs, the importance of your kid's days are going to forever and always trump what might be going on in the life of their neuro-typical caregiver. That's just the way it has to be in order to care for the person we love, right?
But because we care for those who are more vulnerable, who are more defenseless, who literally cannot do daily life without someone right there with them every second of the day, going to the hospital to be with your husband while he is receiving care just may not feasible unless you have an amazing network of caregivers around you.
Why aren't I going to tell our caregiver to take a hike after three snafus this week? Because when I need to have care the most-when that flight crew called me because my own hero went down-care arrived at the doorstep. Care stayed overnight. Care stayed all the next day. Then, new care arrived.
Yeah, my bombastic personality wants everyone to honor their commitments. Yeah, my cranky self wants the family to support without having to be asked or told (‘cuz we all know how well being told to do something works out). Yeah, I'd love to live in a "place" where people are constantly offering to provide care for our guy just because they love to serve and support people with disabilities.
Honey that just ain't life.
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