What Parents of Disabled Children Wish You Knew (Part II)

Doing Church

Did you know that Church and Relationship are synonyms?

This Thursday was the second week in a row that we had a friend come to play with Nathan. Michael is a year ahead of Nathan at his school. Michael, too, has autism and its noticeable in different and similar ways (more on that some other time). He’s an only child, and making friends is tough. It’s not natural for him, but the opportunities are few as well. Together, we’re changing that.

Having him and his mom here felt like ‘doing church’ in the most wonderful of ways. Their visit warmed my heart. “Church,” in this case, means that it’s the first time in much too long where I could tell that I, no we, were living life together. We were enjoying a deeper connection and community in a natural way. In ways we all hope for when we go to church. It feels like coming home with supper waiting for you. It consists of acceptance, warts, and joys, and all. The common was somehow sacred this Thursday.

My hope it that Michael always knows he’s fully accepted and valued here. He is. I’ve made a kind of internal vow for our home to be a safe and loving place for him to be himself. He’s picked up on that. If his mom’s work schedule allows they’ll be over again this Thursday. He says, “We have a meeting.”

I’ll try to put up some video soon, because the way these two boys interact is so hilarious and sweet, and I know you’ll love it.

Make Your Home “church”
Here are some tips, if you’d like to make your home a welcoming environment for a child with autism, so a visit is something to look forward to and enjoy.
(Share this information with your children.)

Structure. Don’t expect that a child visiting will just play. Or do well if there are toys and game around. For kids, with autism anyway, most must learn simple social skills and interactions and adapt through practice. It’s really awkward at first for them. But, it gets figured out through process. You might want to create something, cook something, or play a short game, all together. Doing something with a beginning, middle, and end will add sense to the visit for them. A free play or open-ended style of interactions won’t lend to a high quality visit.

• Time limit. When Michael visits, he likes to stay for 60-75 minutes. He tells us when he wants to go. This is great, but not all kids will know when enough is enough. This can be hard on everyone involved. Plan the get-together with a defined time frame–from the outset. I suggest 45 mites to start (this depends on the child. 30 minutes for a young child might be better). Later you can move to up to 90 minutes. But play for over 2 hours, or trying for an open ended meet up can be counter-productive. A defined time slot things end on a high note, and it’s fairly easy to prepare for the visit.

Provide goodies. Ahead of time, ask if there are food preferences or allergy issues, and then make sure to offer a snack and beverage. Food is powerful. Use it wisely.

Ask Questions. Make an effort to interact personally a few times. Ask a “yes” or “no” question, or an “either/or” question, and indicate your interest and acceptance right away, and along the way. Don’t expect anything, just do it. If it falls flat, try again in a little bit. Be Patient. Children are more like gardens than firecrackers. (So cultivate, rather than expect a dazzling display from a brief “matching”.)

Issues of Eye Contact and Touch We take these social things for granted and generally know what is acceptable with others, and when and where eye contact and touch it is acceptable. Many disabled children do not. They may kiss you all of a sudden, or never even glance at you. Don’t expect them to make eye contact, and don’t try to touch them unless it seems very obvious that they wouldn’t mind. (Realize that for some kids, it feels painful to be touched. Yes, painful. Same goes for eye contact.) That being said, once I’ve built trust, I find kids really appreciate and respond well to a hand on the shoulder or back, or light pressure/touch on the arm, and they warm up to me very quickly. Since sometimes others are afraid to touch them (because they’ve seen big reactions), or because they don’t have friends they interact with closely, they are sort of touch-starved. Acceptable and respectful touch will establish trust. It’s surprising.

• Notice Stuff. Maybe mention that they look good in red, they are wearing cool shoes, or that they’re getting big and strong. See them. Then, say something to let them know. This shows them that they matter to you. Make concrete comments (facts) to them, about them. It gives them a sense of personhood, or place…at the table, if you will.

Talk to the parents. This might seem obvious, but I’m always surprised at how much the parents of disabled children feel relieved to interact and relax with conversation and company. Encourage this. They don’t often get to “feel human” because of all the stress that goes along with caring for their child. (They’re “going” or “on” all the time. It’s exhausting.)

Follow Up. Plan ahead for the next time, soon. Set up something that day, or within a week, to have another time together. If we don’t do this, it falls off our radar. Use a pen and mark the calendar. Consistency is key.

Are you “doing church” with anyone? Why or why not?

Verse of Reflection: 

Matthew 25:44-45 “Then they will reply, ‘Lord, when did we ever see you hungry or thirsty or a stranger or naked or sick or in prison, and not help you?’

“And he will answer, ‘I tell you the truth, when you refused to help the least of these my brothers and sisters, you were refusing to help me.’

Questions, comments, suggestions?

On missing Steve Jobs

I knew Steve Jobs was going to die, so I’m not surprised. But, I am saddened. The departure of such a pivot human being so effecting to the way many of us live everyday is a profound event. What a creative mind. How innovative. What a gift we had.

MacIntosh, Pixar, iPod…and so on probably touched your world too.

The man had 317 patents (see a list and visuals here), and forever altered not just personal computing, but telephone communication, media, the music industry, computer animation/movies, and how we encounter the internet. There’s an App for everything, but now there is no App for missing him. iMourn was the headline on one major online news source, and worldwide Twitter Trends yesterday and today included #ThankYouSteveJobs, #iSad, #ThinkDifferent, #Pixar and more in tribute to him.

I remember using the 1984 MacIntosh, the first product to make Personal Computers truly accessible to regular people. The first Mac I could buy myself was a 7100, with money from a school loan. Graphic Designers are schooled on Macs. We enjoy Apple products. We get loyal, and admire the continual creativity and innovation of a man and a company that doesn’t settle or rely on pilfering products and ideas from other companies to keep going. One word describes Jobs, and really a large part of the American spirit: Innovation!

My prayers go to his family and friends. He leaves behind his wife of 20 years, Laurene, and their 3 children: Reed, Erin, and Eve.

He will be very missed by a great many around the globe.

Do you have a favorite Apple product? What was one of your first experiences like with an Apple product?

I thank you to share your feelings or comments about the passing of Steve Jobs.

Autumn & Mental Illness (Part 1)

bi-polar MacBeth art (by Wiktor Sadowski)

Is Autumn ‘Mental Illness Season’?
It seems like Autumn and Mental Illness come as a pair, sometimes. From what I’ve been able to observe, if one’s going to suffer with something mentally, it’ll usually be between September-Februrary. Seriously, have you noticed this? Think back. Let me know. Is it not enough sunlight? Too many emotionally taxing holidays? Too chilly? Something with barometric pressures? I don’t know. But, let’s get on the same page.

What is Good Health vs. Normal Health?
If you’re healthy and you get a cold once in a while, you’re normal. If you get colds more frequently, you’re “a bit sickly”…but still, mostly, normal. What about if instead of a headache, sore throat, breathing troubles, and cough, it is your brain that “gets a cold”?

There is no reason to believe that the brain (with regards to chemistry, function, nutrition, environmental influences, etc) won’t be susceptible to maladies too, just like other parts of the body are. Science shows us clear indicators of genetic components. So, one can be prone to bad knees, or tendonitis, or sympathetic nervous system brain issues that make one prone to panic attacks, etc.

Of course, when one’s brain is ill, things can go badly quickly. For instance, one may be one’s worst advocate to resume health or find healing, if it is thinking which is impaired. Somehow, the brain (or we could say the “mind”: feelings/emotions + reason/intellect) gets tossed to another category when we think of the frailties of human illness. Saying you “sprained your brain” isn’t met with the same sympathy as saying you sprained your back, am I right?

Do We Love the Mentally Ill?
It’s an “untouchable,” or at least uncomfortable, category where someone’s inherent worth, inclusion in community, or spiritual devotion can be called into question. “Aw, uncle Boss? Sure he did that, he’s been more nuts ever since his time in the military…”

It’s a category we may fear or avoid talking about. Lines separating sane and insane get drawn. Such determinations sideline love, undermine grace, and even harm the true gospel message. Being “crazy” means that some one is alone in a special way. The numbers of Homeless who have a history of severe mental illness is about 25% (2009 National Coalition for the Homeless study).

So, if someone has brittle bones, falls, and breaks both legs? He’ll probably get more compassion or understanding than someone prone to mental illness who undergoes a bout with mania ending in a spending spree. Am I right?

The facts tell us that mental illnesses happen, more “normally” than we may care to imagine. Yet, it is those who are ill in the brain who feel so isolated and rejected during their tough times, compared to people who suffer in other ways.

For my Disability Studies class, I’m reading and learning not just about physical, and mental development impairments (wheelchairs and special education folks), but also of brain illness (mental illness). These are all people of the margins. Truly.

Darkness is My Only Companion: A Christian Response to Mental Illness, by Kathryn Greene-McCreight (Brazos Press 2006), is one of my course texts. I highly recommend it. Kathryn manages her Bipolar disorder, is theologian (Yale), an associate Episcopal priest, and a captivating writer.

See the Book.

Depression is one of the most common brain chemistry issues. By the year 2020, depression will be the 2nd most common health problem in the world. Read the rest of the Fast Fact Statistics here.

Here are the Symptoms of Depression from Greene-McCreight’s book, page 170.

5 or more of these 13 symptoms over a 14 day period, or if these symptoms interfere with a person’s normal life is considered Mental Illness or in this case, specifically, Depression.

• Major changes in appetite or sleep patterns

• Uncharacteristic irritability, anger

• Feeling sad, crying more than usual

• Worries, anxieties

• Pessimism, feelings of failure

• Loss of energy, libido

• Unexplained physical aches and pains

• Hopelessness, guilt

• Inability to concentrate or make decisions

• Inability to carry out or care about personal hygiene (showering, brushing teeth, etc.)

• Lack of enjoyment in things formerly enjoyed

• No desire to socalize

• Recuring thoughts of death or suicide

Has this ever been you, or someone you know?

Probably.
See, it’s fairly “normal”.

What are some ideas for helping those with mental illness? Your input is vital for this conversation. Thank you for your contributions, and spreading the word.

Here’s a Resource: Depression and Bipolar Support Alliance 
800-826-3632 

In Part II of this series, I’ll cover the symptoms of Mania and Schizophrenia…and more is to come.

5 Things of Autumn

We made candied apples yesterday.

Harvest verse:

Psalm 126:5-6
Those who sow in tears
will reap with songs of joy.

He who goes out weeping,
carrying seed to sow,
will return with songs of joy,
carrying sheaves with him.

The olden hymn Bringing in the Sheaves they say was based on this verse. It seem like on Little House on Prairie if the scene was within the church walls, this is the song they’d be singing. But was it harvest time? Dunno.

Autumn
The cooler weather has made me take the mental plunge into Autumn, and I have receipts to prove it…more on that in another post.

5 Things that are on my mind, now that it’s Autumn

1. Apples. Baked, fixed, and eaten in many assorted ways. Wednesday I made applesauce, and today we made candied apples. Apple Dumpling are next. Plus there’s pies, cobbler, etc.)

2. Sweaters (and sweatshirts) cozy stuff. I love ’em. This is, until it’s even too cold for them, then I’m distracted and moody with chill, and I wear my bathrobe over my clothes all day, and doubled socks.

3. Pumpkins Love to carve them, light ’em up, and eat the many culinary pumpkin delights of the season.

4. The Sound of Crisp Leaves. I love crunching through leaves, and that smell of fall that goes with it. mmm.

5. Football. Sunday afternoons: snacks, coffee, and the Steelers.

(There. I’m stopping at 5.)

Now! What 5 Things do you think of with the coming of Autumn?

Drop Kicked!

My website got dropped kicked…again.

(The surprise twist was that it may have been “friendly fire” this time. )

There was collateral damage. I lost widget stuff, all my plug-ins (like post notification, data/stats, about 20 other things) I think it took out the last 2 posts (on revenge (which I liked quite a bit), and “7 things I learned this week” (a humor piece) that was just so-so, to be honest) in the process. The aim now is to have a new and fully awesome post early next week.

Time to decompress, and get some vision. Any words of wisdom for me?

Or, What would you like?
1. A serious/thoughtful post

2. A humor post

3. Other… (specify)

Cheers!