I Know.

As a caregiver to a child with intense and profound special needs, I know that my voice is relevant in this space because of my experiences.

I know that I sigh deeply when people who have no experience with autism offer suggestions on behavior modification.

I know that I want to throttle well meaning folks when they say to “hire help” when there is very little help to be hired or the available help comes at a hefty price tag that a family of ten can not easily afford.

I know that I want to scream when people suggest that we “take him with us – he’ll be fine” knowing he won’t be fine and will instead holler “ALL DONE!” until we agree to leave.

I know that it broke my heart as we tried different medications to thwart the aggressive behavior that resulted after the abrupt ending to Luke’s school year.

I know that it drives me bonkers when my experience with Luke is compared to raising a toddler. No, it’s not the same. A two year old kicking and screaming – kind of cute. A fifteen year old violently thrashing and screaming, not so cute.

I know that my heart often races as passive guilt is heaped upon my already heavy shoulders when we decline an invitation because of finances or weariness or just plain lack of giddy up.

I know that the gossip whispered about time spent away from my children – frequent getaways in order to be a somewhat sane mother who is able to do this exhausting endeavor day after day, hurts.

I know that I could weep every time I think about Luke’s future, my future, – fearful of what opportunities or resources await or don’t await us after 18.

I know what it’s like to be a caregiver of a teenage son with profound and complex and difficult needs. I know that my voice matters. My vulnerability matters. My experience matters as I speak into this space.

I hope and pray that my voice will be a part of many voices that will create change that is desperately needed in America.

However –

I do not know what it’s like to be black and so I will quiet my voice, quiet my judgmental thoughts, quiet my preconceived ideas and opinions, and I will listen. I will listen to the voices of wisdom who can teach me. I will listen to their experiences and their stories, and I will learn.

This is know.

To learn more about how you can help caregivers please visit www.thelucasproject.org

A Holy Shift

I descended the stairs, immediately irritated by what was awaiting me with each scream originating from my 15-year-old son. Great, I muttered as the uninvited stench rose to greet my nose. Luke, my son with profound special needs, required yet another diaper change – a chore that was becoming increasingly able to grate my very last nerve over the past few weeks as his father recovered from shoulder surgery – a recovery period that did not allow for diaper changes.

I opened the door slightly and held my breath. The third of the day so far. My least favorite job in the whole world.

I did what was necessary – cleaned my big 15-year-old man child, and as I prepared to leave, he reached for my face, met my eyes and sang in his sweet jumbled way,

Oh God you are my God, and I will ever praise you.

Continue reading “A Holy Shift”

WHAT HAPPENS?

I spent an intense morning with Luke at the eye doctor. Honestly, we’ve been frequenting doctor’s offices most days. Yesterday was PT for Ryan my husband, today, eye doctor for Luke, tomorrow and Friday PT for Ryan, Saturday, family doctor for a new wheelchair for Luke…

This is life for special needs families.

I made this appointment months ago – before Ryan had committed to his new surgery date in Feb – before when the original date was Jan 6 but then Luke was still in PICU & so we rearranged our schedules.

Today – 8:30 a.m. Feb 25, 2020. 5 days post op for Luke’s father who usually joins me on these exhausting excursions because it’s hard. But Ryan couldn’t join today with his arm in a brace, and I bribed my oldest daughter Mya to help. Bribed her with the promise of Starbucks. She agreed because that’s the kind of person she is. A lover of people and a lover of hot chocolate.

At 15 years old, Luke hates almost everything out of his ordinary – “GO TO SCHOOL!” was heard loud and clear – repeatedly- during our time spent in the serene waiting room added with the ants in his pants which resulted in a loud “GO WALK!” to the cacophony of chaos as mothers quickly shielded their children from his outstretched, unstable movements which threatened to grab or lick or stumble headfirst into their small toddler’s bosom.

What happens?

I asked myself – my blood pressure rising and heart palpitations quickening with each high pitched scream as Mya and I stared at each other with helpless looks as we tried to wrangle our big man child back into his stroller.

What happens when he becomes too big, and I can no longer physically restrain him?

What happens when he can’t go out in public because he might cause harm to another person?

What happens when my mental stability is hinging on instability?

What happens when his iPad isn’t interesting to him anymore?

What happens if he needs a diaper change and there’s nowhere to change him?

We were able to calm his anxious soul today quite by accident. The nurse played classical music from a contraption with green blinking lights (price tag probably $5000) to get an idea of vision capacity. He loved it and relaxed. I asked if we could keep playing the song on repeat for the remainder of the visit. She agreed & patted his knee “it’s ok buddy, it’ll be ok.” She was looking at me.

It’s okay is what happens. Mercy happens. Compassion happens. Occasionally someone really sees us – that’s what happens. Hot chocolate and strong coffee happens.

Moment by moment as we “just keep livin”

That’s what happens.

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!