Blog

Simple Ways to Support Special Needs Caregivers

Anger, guilt, anxiety, depression, stress and exhaustion. Pick a word – special needs caregivers experience it. Not seasonally nor occasionally but daily.  I do with 8 kids; one, my 15 year old son Lucas who has profound special needs which include limited mobility, speech, and incontinence. I’m not sure I know how to relax anymore or even dare try to because the second I sit down and finally exhale there will be another task beckoning – probably immediately – and I’ve discovered that it’s more difficult to rebound out of relaxation mode than to simply continue, head down, in stressed out mode.

We could all use a helping hand – a friend or a stranger who gives us a tiny boost of encouragement when we need it the most. Consider the caregivers in your life and then offer to help in a tangible way. Perhaps one of the following simple suggestions might lift their burden a bit.

1. We are lonely and as we crawl deeper into our loneliness we often struggle with anxiety and depression. Many times we are excluded from gatherings because of the special needs factor or we decline an invitation because the excursion will be difficult in our unique circumstances. We know it will be overwhelmingly exhausting if we show up so we save our limited supplies of energy for our families, but we do long for community. If we invite you over, please come! And please offer to bring something. We are desperate for human companionship and really want to make friends but excuse our initial awkwardness. For most of us it’s probably been awhile since we’ve had the opportunity to use our social skills.

2. Offer to watch our kids for a few hours so we can take a break -even the scary kid. Sorry, bad joke but I get it! Luke would be intimidating if I didn’t know him. Ask questions. A lot of these kids have really simple familiar routines, and if you stick to the routine, they’re content.

3. Sit with us and let us vent. Don’t try to fix our problems or understand or pray it away. Just listen and empathize – which is not offering solutions but looks more like “I’m so sorry, how can I help?”

4. Exhaustion is part of life as a caregiver. All the little extras that people do are greatly appreciated because we we are being seen. We feel invisible the majority of the time. Stop by with pizza or dinner or gather a crew from church to clean our house or accomplish yard work. We will be so grateful.

5. If we have other kids, and most of us do, we LOVE for them to enjoy all the fun normal activities such as: football games, sleepovers, birthday parties, dodge ball games at church, bowling, and the list could go on and on. We want these activities for our kids, but it’s often difficult to get our typical kids to and fro with our special needs situation. It takes a lot of extra work to bring Luke anywhere and with his sensory issues most of these fun options are not practical. We are okay(ish) with staying home with our child, but we don’t want our other kids to constantly miss out. Please offer to take them and bring them home if possible. This is a huge help in our life and leaves us feeling a little less guilty.

6. Encourage your church or any tribe you belong to in the community to step in and support these families. A few examples include: a week long summer respite camp, a special day of VBS, a monthly break to serve the community, or a love offering to purchase a family some needed equipment for their child. The possibilities are endless.

7. Finally, if you’re going to offer to pray (or bless my heart in the South) please offer to DO. Prayers have little value if not followed up with something tangible.

That’s it.  I hope these suggestions helped a little bit.  Knowledge is power and when we know we do better.

Just keep livin!

See Me Too – A Caregiver’s Plea

Dear mama with normal children,

Normal? Typical?
What’s politically correct you might wonder?
As do I and –
What is normal anyway?
Honestly, I’m not sure because I’m tired.
And I don’t spend my free time on political jargon
And I definitely don’t sleep well
And most of my waking hours I’m caring for someone else
Or finding resources that will hopefully make our life a little bit easier someday.
Someday – a day that feels more and more like a unicorn lately.
You see, I’m a special needs mama to a 15 year old son.
And no, it’s not politically correct to call myself that
Because I am more than just special needs
Or so they say
But am I?
Because a pretty high percentage of my life revolves around my child and what we can or can’t do because of his limitations.
I often see you and your beautiful typical functioning children out and about in the world, and I’m envious.
Yes, I said that out loud.
And I’m not supposed to say those words because I have my miracle baby.
The child the experts said would never live
So there’s always guilt attached
To my envy. Continue reading “See Me Too – A Caregiver’s Plea”

Gathering

The past couple of months there has been a lack of peace in my home, and I often thought, this mothering gig really isn’t my thing anymore. 4 teenagers, one with profound special needs, a pre teen, a 10 year old, a 9 year old, and a four year old who has no lack of confidence. It was a lot. Between health and job and hormonal issues which led to emotional issues and arguing and backtalk and snarkiness and bad attitudes and the older kids teaching the younger kids things they had no business knowing; the whole thing was a big honkin cup that overfloweth… or perhaps, it was more like a kitchen sink or the bathtub spilling over & it was causing significant damage. And we – the parents – should have immediately steered the ship back on course, but instead we bickered & bitched & complained as we held on for dear life to the raft boat the kids threw us when they made us walk the plank.

This sudden change in the family dynamic was attributed to a few circumstances: one, everyone was getting older and hormonal and becoming more opinionated & two, our move to an urban community where the kids had opportunities for activities, sleepovers, and jobs and the focus slowly shifted from the family unit – a strong unit we had in rural America where we relied heavily on each other because it was all we had – to individualized focus “You take care of you, and I’ll take care of me” & as long as the older crew took ownership of themselves: jobs, food, school, homework, play – we didn’t question much. We reasoned it was simply a stressful time in our life and “this too shall pass” and then…

Then, a few weeks ago, I said to my husband “I really miss family dinners.” You see, with the introduction of jobs and late nights and neighborhood kids to play with and everyone fending for themselves, and in turn each individual grabbing a bite to eat here and there, dinner time as a family had become almost obsolete – the rare exception in our family since our conception in 2011. For 8 years, we have religiously sat down at the dinner table and enjoyed a meal together – religiously until the move this past December. When Ryan and I married, we knew this tradition would provide a foundation to our success as a blended family – the art of gathering around a table for a home cooked meal and offering a blessing for not only the food we were about to eat but also for his faithfulness through our lives. We knew that the table would provide the foundation for community and connectedness in our newly blended home and the absence of the table would only leave a void and disconnect.

We recently reincorporated family dinner night. It looks a little different than it did in rural America, and we eat later – around 6 now because of play time with the neighborhood kids. We’ve made it a requirement for any child who is home that evening, and my oh my, what a difference we’ve seen already. Attitudes have changed and lightened as we laugh around the table partaking in fresh pasta and warm bread. I like my kids again & I think they might like me too as the focus has shifted, and we get to know each other on a heart level – on a real level- rather than just co-existing.

There is so much chatter in the world today about how lonely we all are, how depressed and isolated and longing for community, and this is not only true for ourselves as adults, but it’s desperately true for our kids. Our homes need to be safe places of respect & connections and what better way to foster these desperately needed essentials than around a table? What better way to encourage conversations? And what better way to show love than to invest our time, our most precious commodity, in them? Give it a try. You won’t regret it ❤

Just keep livin.

Luke’s Brain

I often struggle to understand or explain Luke’s thought process to others. Luke, my 15 year old primarily non-verbal son with profound special needs. Friends, bystanders or even specialists will inquire about where he is developmentally and that answer is difficult to identify. Luke’s brain doesn’t seem to process like typical brains – whatever a typical brain is – but there is a baseline that we all adhere to and he doesn’t land linearly on it – or near it at all. He tends to land here and there and everywhere. He understands more than he can comprehend & yet there is a process that is uniquely his. I believe at times it’s clear to Luke what he desires, but at other times it’s not, and so he’s not able to articulate exactly what he wants. For instance, when he says Mother Goose this does not mean he wants Mother Goose. It means I don’t like what I’m watching so please change it until I stop screaming which will then be your indication that I’ve made a decision. All he knows is that there is something in his sphere of existence that is causing frustration, and he reacts by screaming until that frustration is addressed.

We attempt to remedy his angst by offering different music, shows, activities, or remove him from the current surrounding, and it may help or it may not. Many times we’ve gotten him ready to go “Whee!” at the park, per his request, and we arrive and can’t get him out of the car. He absolutely refuses to leave the vehicle and engage at the park. So then we bring him back home and start the process all over again. One thing that does work about 100% of the time is feeding him cookies or cake or sweets of any kind (it’s pretty effective with all of our kids), & although this satisfies him for the moment, it’s not good for him to gorge on cookies all day and that’s when our higher reasoning skills as his caregivers must step in and say no. Luke often wants a lot of things that aren’t good for him – as any child would – playing on his iPad all day, not eating fruits and veggies, trying to walk into the road and so when individuals ask What does he want? it’s a relevant question but sometimes it’s not because Luke doesn’t necessarily know what he needs or wants or may want something that wouldn’t be good for him.

The other day around 7 p.m. Luke’s screaming was relentless. He had eaten a big dinner, taken a long soothing bath, had his juice, was jammied with his iPad in hand, and he just continued to scream. Nothing would make him happy. As you can see from the photo, he often hangs out in this sensory area we created, and his bedroom is inside the smaller door. In the background you’ll notice the safety bed which keeps him secure at night and provides a sense of calm, and you’ll also notice, his bedroom door and bed are wide open for him to access at any point.

This particular night we were finally fed up with trying to determine what was causing his frustration, and in a last ditch effort we gave him his chocolate milk with melatonin, (a ritual since 3 years old), turned on Pandora (which he falls asleep to) and put him to bed – an hour earlier than usual. He didn’t make a peep. All he wanted was to go to bed – with the ritualistic aspect involved – Dad putting him in bed, handing him his milk, turning on his fan, and tucking him in with his blankie – but he, in his limited knowledge and vocabulary, could not instigate this process for himself. He couldn’t and wouldn’t voluntarily lay in bed because that’s not how the process goes in his mind. Dad (or Mom) had to do it.

That’s Luke’s brain to the best of my limited comprehension – his wonderful, miraculous, and unique way of looking at the world. It’s joyful and frustrating and messy and damn near impossible at times, but it’s his reality and ours, and we honor it; accept it; and live with it.

Just keep livin

Get Emails from Jess
Sunlight Burning at Midnight

Sunlight Burning at Midnight