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”

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

Mom! Don’t Bring Luke!

A few weeks ago, on a particularly warm summer day, Ryan and I announced to our crew –

Kids! You’ve been so helpful lately and did your chores without complaining so we’re going to have a family fun day at a water park!

Kids responded with glee and excitement and Yays! all around and asked –

Who’s going to watch Luke?

We’re going to bring him, we replied.

He’ll enjoy getting out of the house. 

Mom!!!!! NO!!!! bellowed the sounds of despair. We’ll have to leave early if Luke comes!

This is a constant dilemma we face.

We brought him.
He did make it very difficult and tiring.

We did have to leave early because Ryan and I were absolutely beat after a few hours of fun.

We arrived around 11:00 a.m. because this particular event had free food (major bonus with our crew!). We loaded all eight plates full of grub, and then Ryan retreated to the furthest corner of the park, in the shade, to feed Luke so that the stimulation of all of the people didn’t overwhelm either of them and so he wouldn’t try to grab the food off others plates (Luke not Ryan). I picked a table near the food because I knew my tribe was going to take full advantage of the free factor.

Mya took charge of Annabelle as she skitted about, and the rest were free to roam independently. Ryan and I took 20 minute intervals engaging with Luke. A word here – Luke is no longer content to sit. EVER. He has declared a mutiny on his stroller and wants nothing to do with it, but he needs constant supervision and assistance for his and others safety. We took turns introducing him to the parks plethora of activities – 5 slides, numerous water features, an accessible swing, acres of land to explore, lots and lots of hot dogs because he wouldn’t eat the chips or watermelon or popsicles.

About 3 hours later Ryan and I looked at each other and we knew – we were done. Physically, mentally and emotionally, and we also knew our kids wouldn’t be happy about it.

Let’s give them the 30 minute warning

My wise husband suggested.

We did.

The moans of disappointed began –

Luke always makes us leave early! Why can’t we find a babysitter for him? Why can’t you and dad drive separately? (Which maybe we should have but the park was about 45 minutes from our house)

WHY DO WE HAVE TO BRING LUKE? They wailed

And we responded, frustrated as well and exhausted, questioning the excuse we offered-

Because he’s part of our family, and we need to include him occasionally. 

We currently do not have a solution for this problem.

It is what it is.

We do feel the need to include Luke – even at the expense of his siblings happiness, but we understand their frustration as well.

This post is simply to bring awareness; the little things that special needs families struggle with such as decisions that sometimes cause pain for other family members. I do believe that our children will be better human beings in the long run for having Luke in their life as they have patience, flexibility, and independence that other kids may lack. They have also learned compassion and acceptance towards those who might not be just like them – those who might cause a bit of a disruption to their happiness – those like Luke.

 

Just keep livin.