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”