A Reminder – They’re Still “Just Kids!”

Sometimes we can laugh at a behavior because “all kids do that.”

We have friends that have no “neuro-typical” children. Once couple has 3 autistic boys. When the wife and I would talk she would describe a behavior of one or more boys and I would find myself telling her that our son who does not have autism did the same thing.

***

It was to be an exciting evening. In fact it was an exciting evening, sprinkled with the unexpected! Our son was about 4 years-old.

For our anniversary, we were renewing our vows, as we do yearly. However, this time, we invited the church members to join us and renew theirs with us. Our new Bishop was to attend and preside. Prior to the ceremony, the Bishop and his wife came to our home for dinner.

We hoped that our son would not have one of his wild temper-tantrums, aka, “melt-downs.” We were treated to something different and surprising as “dinner theater” began at  dessert time. Our little son decided to undress from the waist-down and enter the dining room to look at us. As we were “dying a thousand deaths” the Bishop and his wife looked at him, then at us. It was one of those “we’re-frozen-this-is-not-really-happening” moments. One of us dashed from the table to rescue ourselves from further embarrassment.

But guess what? Not only did the dinner turn out well, but the Bishop insisted that I get out of the way while he washed the dishes!

We were fairly confident that things would go smoothly afterwards (oh how naive we can be when we are new at this)! We made to to the church, dashing in and managing to keep dry in the pouring rain. Rather than holding my husband’s hand, however, we renewed our vows with me holding our little guy, sound asleep, in my arms.

 

Open it up – but keep emergency equipment handy

Melissa’s Tuesday post reminded me of a visit to friends in another city.

Their church has an annual “Wild Game Feed,” in which folks empty their freezers in preparation for hunting season. They thaw all kinds of meat and whip up their favorite game recipes, set up their church hall for a nice dinner and sell tickets as a fundraiser.

So Melissa, Joey and I made the hour drive to enjoy good food and fellowship. We shared a table with some nice people, and we were enjoying our plates full of pheasant, venison, wild rice, squash and other savory fare. Joey, who can be quite picky, was downing large amounts, even in a new setting with strangers.

I was gabbing with a person across the table when my nose sensed something burning. I looked toward the kitchen to see if there was a problem there. Then out of the corner of my eye I saw a flicker to my right – where Joey was seated.

Maybe the tea lights on the table were too bright for him. Maybe he just needed some room. For whatever reason, he’d placed his paper napkin over one of the little candles, and it was dissolving in black ash and orange flame.

With the reflexes and instinct created by years of neurotic care giving, I flipped over an empty coffee cup and used it as a large candle snuffer. I had the small but smelly conflagration out quickly, which was good because Joey was ready for dessert.

As much as I enjoyed the food, as proud as I was of my coffee cup heroics, as relieved as I was that Joey a) didn’t burn down the church and b) had taken his evening medicines with a healthy meal, the most rewarding part of the evening was the good-natured response of the other diners.

Nobody had the vapors or got angry over the mini-blaze. Folks were concerned but also humorous about it all. Our friends still joke about it with us, and always invite us – all three of us – back to the Wild Game Feed.

Any of us who are care givers receive a precious gift when you graciously accept the various disasters that come along with our visits. I was going to say that your hospitality makes our hearts glow, but that made me think of fire and now I have a nervous twitch…

Open it up for them – Part 1 of many

We want to start having company over. We love John and Jane and their family. We want to visit with friends and laugh. We want to visit and have “normal” lives without having to wait until our son is permanently in residence. We want to have the time to clean and prepare food. We don’t want out guests to have to bring anything. How do we enjoy them, and they, us, with all of the challenges we face?

How do we make it so that we can create a “normal” agenda doesn’t upset our special-needs children?

We do not want to wait for another 3-5 years to have special people in our home. We want to laugh, play cards, and serve yummy food to them.

We wish to open our home to our friends without feeling selfish about the fact that we have a special-needs person here who, of course, takes priority.

There are things that we know we can do. We shop early, we time our cleaning of our house. But the biggest challenge is that, even when we have fed and medicated our adult child and he is ready for bed, have we done enough? We do not speak in loud voices.

However, there is something even more. As we already do, how do others make it so that, when guests visit, our child will either enter the room and “check them out” without feeling stressed, or simply be able to go to sleep without thinking that they have to leave before all is peaceful and bedtime can start?

We have worked on this for years. With some guests, our son doesn’t mind whether they are loud. He simply closes his door and goes to sleep. With other guests, he waits until they leave.

Are you able to have “friends come over to play” in the evening without causing a melt-down in your special-needs child? We finally have more success than not, but it has taken 18 years. Even as an infant, our boy would scream and require so much attention that having company was a privilege that we did not have.

“Good church!”

One of the churches where we live offers a monthly service called Rhythms of Grace. It was developed on the East Coast and is popping up in some creative and big hearted churches around the country.

The folks who brought it to our city describe it “as a worship service designed for people with sensory processing issues, such as autism, ADHD and sensory processing disorder. Rhythms of Grace offers a safe, warm environment for families to enjoy church together. All denominations welcome.”

Finding a church home can be as hard as finding any other public space for people with special needs and their care givers. Many people come to church for a time of peace, beauty and order – and those of us who know that “sometimes care giving stinks” have no illusions about how those in our care can chase those qualities right out of the room.

Some church goers will complain that their sacred time and space is being violated by special needs people. Others will express fear that “those kids” might pose a danger to other children in Sunday School. Still others will warn that the church doesn’t know how to respond to their “issues” and could face medical emergencies or legal problems.

But at the local church offering Rhythms of Grace, nobody flinches if a member of the congregation gets up and walks (or runs) around, generates some noise, explores the sanctuary or does pretty much anything else that’s not dangerous.

Some of the participants make spontaneous announcements. A number of folks from area group homes attend the service, and on a recent Sunday one gleefully proclaimed, “Good church! Good church!”

We hope that God finds more and more churches getting that kind of review from special needs folks and their care givers.

A Shooting Star

It is early Sunday morning. I do not want to get out of bed. I hear a little voice say, “Happy Mothers Day, Mommy”. I open my eyes and see my little 5 year-old, holding a plate with food, carefully arranged, from last-night’s dinner, including a few pieces of dried-out tortilla. This is a new stage in her development. She thought of me first. I saw a fuller person.

With those in our care who are classified as “typical”, we see these beautiful milestones, which then become happy memories. When she learns to use the bathroom, when she learns to read and to do math, she only needs a little review before she excels to the next stages of hygiene and of her education in school.

Milestones are different with special-needs people. When they are children we are often bombarded with phrases from many doctors and teachers beginning with “Your child will never…” Only one doctor told us to treat our child as much as possible as if he was any other child.

“Your child will never live past the age of three,” says a doctor. To another care giver, a teacher says, “Your child will never have receptive language.” We persevere. We watch as the skillful therapists, who come to our home every day after school, teach our non-verbal child to sit and listen and then to learn to recognize the alphabet before the kindergarten year begins. Things move along, slowly, but they keep moving. Seemingly out of nowhere, at age 15, the same child uses a perfectly-formed sentence for a simple request. And the child who was not supposed to live past the age of three is now “annoying” their care givers with their “teenage ‘tude!”

Special-needs people do not have the same developmental “checklists.” We don’t check-off a skill and move on to the next. Their checklist comes on an endless sheet of paper. We are lucky with our child. The skills are continuing to appear into adulthood. Although he may fall back into some of his old habits, new skills continue to emerge.

It is like a shooting star. We may think that we will never see one, but, we are often thrilled by the unexpected!

I must go now. The 18 year-old, who amazed us by learning how to use the bathroom at age 10, fell asleep this afternoon and wet the bed. We hope that you are as blessed as we have been, as one in your care surprises you with new skills!

Belonging

“Shall we watch Sleeping Beauty Together?” he asked.

Without knowing this child, one might say only that he was polite.

However, this child knows less about pronouns than I know about rocket science. Somehow, he remembered what he had heard and was able to put a similar sentence into one that he could use to meet his needs.

This sentence broke the silence the way a train horn suddenly blasts or the large dog barks sharply for no apparent reason. My eyebrows raised way up as I turned to see him looking in from the other room. A simple request, said properly for the first time, turned into much more!

“Good speaking!” I said. “That was very, very good!” I smiled at him and he was taken-aback and smiled too. He forgot his request for me to put a movie into the VCR and felt connected. He stepped down into the living room and sat next to me on the sofa and said it again. I knew that this was good because not only did he sit with me without being asked to (or bribed to, say, with food) but “all his teeth were showing.” He has this way of showing all of his teeth and even when it is not a complete smile. He sat up straight and proud.

Belonging, the third in the list of Maslow’s Hierarchy of Needs, may be the first need that people with autism address for themselves.

Our son does not worry about survival or safety. His needs are taken care of. But, deep inside of this supposedly “distant” person, is the need to feel a part of the big world around him.

This time, he was in charge of the question. He was not being corrected. He said it the way the big people did, without being prompted. He perceived himself as one of us. He was so proud of himself that he asked the question a few more times, just to see my reaction and to hear my response, “Yes, we shall watch Sleeping Beauty together, tonight.”

For those of you caring for people who cannot do certain basic things, the ones that we take for granted, have you seen this higher level brightness spout unexpectedly from one in your care?

Letting them be strong

A house was going up in flames. All that the firefighters could do was keep it from spreading to neighboring structures.

Out on the sidewalk, I attempted to console the people who were watching their home and possessions burn. I made my best face of pained concern, and said some very nice, very canned words of comfort.

One of them fished in his pocket and said, “I have a few bucks on me. There’s a 7/11 on the corner – let me buy you a cup of coffee.”

“I, uh, no, that’s OK,” said my mouth while my mind huffed, “Hey, I’m here to help them, after all. Am I not the one in the position of strength and power and they the weak and helpless?”

“No, really, let me get you a coffee.” The man was assertive, almost angry.

I gave in. As he jogged off to the corner store, I was blessed with a flash of understanding. With his house and property going up in smoke, and only a bunch of question marks ahead of him, that guy had the power to dig out some change and buy coffee for a stranger. He maintained his strength and dignity there on that little square of sidewalk.

When it comes to the “hierarchy of needs” described by psychologist Abraham Maslow, those of us who are care givers tend to focus on the three lowest levels – survival, safety and belonging.

We take care of our loved ones’ physical necessities, try to keep the place clean, and try to stay affectionate. These are essential. But we can become trapped in an ego pleasing role of strong provider, casting those in our care as weak and helpless.

The higher needs, according to Maslow, include the ability to achieve goals and to stretch toward one’s unique potential. Like buying a cup of coffee for a stranger and claiming one’s place as a generous host, even in the midst of catastrophic loss.

We need to let those in our care do for us in ways that are natural for them. We need to accept their gestures of love and support, and even learn to ask them for help that they can realistically provide. We have to watch out for allowing them to express only needs, which feed our egos and drain our energy at the same time, and give them space to show off their strengths and gifts as well.

“Secrets” About Those In Our Care

[Dear Readers: there are links in our posts that we aren’t putting there. They have a double underline, and are ad links used by WordPress to pay their bills in support of blogs like ours. Please let us know if they become a distraction. We will have to pay an annual fee to make them go away, so we hope that they are not too much of an intrusion. Tim & Melissa]

What do we know about those we care for day after day?

In many instances, we “knew them when.”  For our son, it was when he was a baby and he showed no characteristics of autism.  The fact that he didn’t speak before he was 2 years old was not unusual because everything else seemed in place.  We worked hard to help him along throughout his childhood.

Now, at 18, his symptoms have been obvious for many years.  One of his traits is that he appears as if he is ignoring people, although they have his complete attention. We will likely hear him quote things that they said when he returns home.

We remember them:  before autism, before Alzheimer’s, before the horrible, physically and/or mentally disabling accident, before they couldn’t hold it together anymore because they drove while drinking and someone else died as a result, before cancer struck, before the stroke…

We know the person in our care better than most, even if they were born with “it”.  We have cared for them for so long that we recognize what makes them “typical” more than what does not.

When our son is simply quiet and his teeth are showing, he is thinking good things.  This is a blessing!  When he is vocal in church at an inappropriate time, but smiling and clapping his hands onto his chest, he could be thinking “I did not want to come here and have to sit and be quiet, but I am enjoying the music.”

Then there is the other side.  When one in our care is constantly cheerful, are they crying when we are not looking?  “She became so mean when her illness began.”  Maybe she was always mean and was able to control it.  Maybe she was never mean, and still isn’t.  Maybe she is afraid and expresses it with anger.

For those we care for and love, it is important that we do our best to see and touch the human needs that are beyond the hygienic, medical and physical help we give.

What do we know about them that helps us understand what their needs better than others?  How do we help other care givers know them as we do?

“So, What is Your Child’s Special Talent?”

How many times have you parents heard that question?  The assumption is that if your child is special-needs, they must have some particular power in one area.  Might they be able to out-do most air-traffic controllers?  (I know of one who can!)

Well MY child can figure out a DVD or VCR player faster than a speeding bullet!  (Oh, that doesn’t count?)

My usual answer is, “My child is not completely withdrawn.  He is more social than most special-needs kids.  Thus, he doesn’t focus on just one thing for long periods of time, and doesn’t turn into an expert.”

My son does much of the mental flitting that typical kids do.  He can be a “social eater”…he sees us enjoying certain foods so he wants to try them.  He doesn’t tap into some magical part of his brain and become Top Chef.

He has remorse when he has done something wrong (even though he had  no self-control when he did it – something such as a “meltdown”), so he is connected, from which follows that he cannot be a savant because he pays attention to too many things outside of his favorite interests.

“Oh, look at that beautiful child with Down’s Syndrome.  I just love those children, they’re always so loving.”  Are they?  Or are they just like my kid…typical in more ways than not?

I want to say “Don’t tell me that you understand my child who you do not know!”

It is easier to stereotype a typical teenager than it is to do so with a special-needs person, as far as who they really are.

As soon as we think we’ve gotten through to those who think that our typical-looking child should stop acting like a spoiled brat, they fling into the opposite direction with “understanding”.  “Oh, your child is one of THOSE children.  Now I completely understand…”

Don’t ask me what his special talent is or assume that he will love you and hug you as soon as you meet him.  It is wonderful to care, but let ME do the talking if you really want to understand and connect.

Thank you for listening to me rant!

Make space for sadness

Our culture doesn’t do well with grief.  “Stay busy,” “Just get yourself a pedicure!,” “Put closure on it,” and other well intentioned ideas send the unintended message that grief is unhealthy or immoral.

This can be especially cruel to care givers.

The sadness we experience is prolonged.  It is chronic, not acute.  It is our nature to expect progress and reward for effort, and we feel grief and loss when they don’t come.

Like all people, we daydream about wonderful outcomes in all of our great endeavors – education, career, hobby, marriage, parenting and even care giving.  We want to see great stuff in the lives of those we love.  But we spend long seasons in situations without dramatic results, and sadness builds up inside.

The ancient Near East is called “The Cradle of Civilization.”  We know that cultures arising there did not leave grief to the individual, but expected the community to share in any member’s sadness.  It is the background to scenes that entered our Western culture via the Bible:    “They came to the house of the ruler of the synagogue, and Jesus saw a commotion, people weeping and wailing loudly”  (Mark 5:38).

The Jewish people have, for thousands of years, included prayers and songs of sadness in their sacred writings.  They express deep grief, maybe even depression:

“You have put me into the lowest pit, into dark places, into depths.”  (Psalm 88:7)

Closer to home, a Native American man on the Standing Rock Reservation in North Dakota shared,

“There was a time in our communities when ‘professional wailers’ would sit in the back of the church and wail very loudly. As a child, I didn’t understand why they did that, and it felt a little embarrassing. In October, my aunt, whom I referred to as Momma, died. As I sat in the front row, I longed for those women and men who sat in the back and wailed loudly so that the mourners in the front of the church could feel more at ease to do our own mourning.”

Are you able to express your sadness, not as shameful but as sacred?

  • “Oh God… You have noted my lamentation; put my tears in your bottle; are they not recorded in your book?”  (Psalm 56)

Can you find others who can help you express your grief?  It is holy work for people to share:

  •     “Rejoice with those who rejoice, weep with those who weep”  (Romans 12:15)