A Day in the Life of Joey via JOEY STORIES – One after Another!

Spending time with Joey is normal to us. He works 25 hours a week; otherwise, he’s “all ours” for 143 hours a week, but who’s counting?! And because we’re with him so much, Joey seems very normal to us; but my time out with him the other day (a little “date” after work)  reminded me how different (yes, abnormal) my every day is from other folks I know, and how many things need to be “considered” when going out with Joey!

 For some reason when we were out together, I realized that my time with him is spent mostly in a mode of PROBLEM/SOLUTION time! I guess that’s why I don’t often take him out after he’s already put in a 5 hour day at work, but I had a few errands AND fun planned for us. 

 The day started as it always does: letting Joey choose a shirt. How long might that take, one might ask? One never knows.

PROBLEM: Is his team winning or losing? Does he want to wear a Power Ranger color or a sports team color? Is it snowing so he needs to wear something that reminds him of Narnia? Does he even want to get dressed? Today: none of the above.

SOLUTION: About 15 minutes later (not bad, mama!), I had him in clothes that would double for work and our “outing”!

The next 5 hours were filled with getting ready for the day, computer work, a meeting Joe and I attended, lunch together, and then I ran a few errands alone before getting Joey from work and Joe headed to the dental office to work through the evening.

 On with my day, I got Joey from work, telling him we were going to run some errands, have a “surprise,” and some fun. (No, I didn’t forget to tell him in the morning. I purposely chose not to tell him for this very reason: He looked at me and said, “No, mom!”)

PROBLEM: He doesn’t want to go. No big surprise, but I have to figure out how to make this sound FUN!

SOLUTION: “Joey, I have a few things I have to get done, but then I have three fun things we’ll get to do. Are you ready?” (You can guess the answer, but we went anyway.)

 Our first stop was to a store.

PROBLEM: He needed to use the bathroom. You must understand that I won’t leave him in public men’s room alone – I don’t trust/like the idea – even though he’s 30. I found our location but there was no family bathroom and Joe (dad) wasn’t with me. I felt it appropriate to ask a clerk if I could please take him into the women’s bathroom and that I’d wait until no one was in there. You see, when you have a two year old boy, women don’t mind if they’re in the same bathroom. A 30 year is different. The clerk said she needed to call the manager (good thing this wasn’t an emergency). I thought to myself, “Well, there are other options: Shall I take him in the men’s room?” Maybe you have a solution, but here’s what we did:

SOLUTION: Granted access, I took him into the handicapped stall and quickly (well as quickly as one can move when slow is your only MO) used the facilities, got out and made sure he thoroughly washed his hands (though he was intrigued by a different paper towel dispenser than he’s used to – a distraction which slowed him down and might have kept him in the men’s room for a very long time making me “wonder” why he wasn’t coming out had we gone that route) but how nice that NO ONE came in! QUICK (not really, it just sounded good in this story line) EXIT!

Next stop: Joey looked at me with eyes that said, “I don’t want to go in.” It was raining and snowing and I know how he hates getting wet. (Imagine daily showers.)

PROBLEM: Should I make him join me if I can see him from the store window?

SOLUTION: I let him sit in the car (locked) while I ran in – and yes, I could see him from the store front window (and he is 30!). He keeps an eye on me. I keep an eye on him. That was the quickest thing we did on our date together!

Our next spot was an outdoor mall area and after we’d walked across a parking lot, him tugging on my shoulder the whole time, I realized I had left something I needed in the car. So, while it was me who made this problem, it was still one to be dealt with. And yes, it was still snowing and raining.

PROBLEM: Do I take Joey all the way back with me, or have him stand where we stopped and let me run to the car myself?

SOLUTION: 3 minutes vs. 30 seconds? Decision: I’m running! I put his hood up and showed him right where to stand – up against the wall of a building. Thankful for wearing flats, I jogged (practically backwards) as I kept an eye on Joey, to the car and back! (Thankful that my back is fairly healthy currently!)

Next:  Another store to return something and I had to try something on. 

PROBLEM: Joey can’t come in the dressing room, so a spot was needed for him.

SOLUTION: This store caters to men shopping with their gals….chair right outside the dressing room which was 2 feet from me (and I could peek out to see him!) MY LUCKY DAY!

STOP for one moment of reflection.

PROBLEM: As we walked around – Joey holding onto my shoulder, people would look at him, then me, then away.

SOLUTION: Smile at each person.

PROBLEM: Only two people returned the smile.

SOLUTION: I’m smiling anyway! J J J (So there!) J

Moving on, we were headed to the next errand, when he spotted GAME STOP – one of the places I planned to stop “for fun.”

PROBLEM: It’s across the street, so we need to stop somewhere else first. He started pulling my arm to head in that direction. He is strong. Did I mention he’s 30?

SOLUTION: I told him we’ll “go there next.” Thankfully he was content with that answer!

Yes….GAME STOP was our next stop.

PROBLEM: I don’t even know half of the games Joey owns, so we can only “look.” Dad is the one who is involved in this part of Joey’s life, so we will have to get “clearance” for any purchases from Dad as he knows what the shelves at home hold!

SOLUTION: Call dad to see if he can give a little direction.

PROBLEM: Dad is working, but perhaps he’ll call back if he gets a break.

SOLUTION: There really wasn’t one, except Joey “bought” that explanation and we enjoyed time looking and “ooohing” and “ahhhhing”. I just pretended I was shopping with my girlfriends and it was a lot of fun….all those PlayStation, Wii, etc. games…OOOO….AHHHHHH. It worked.

Next: meet my sister Sue (Joey did not know of this plan) for dinner before the last surprise.

PROBLEM: THERE IS NO PROBLEM! We have food and we have Aunt Susie. He’s happy!

SOLUTION: Order spaghetti or a burger. Spaghetti worked. HAPPY!

We were off to Barnes and Noble to learn to use the NOOK Sue got Joey. There will be a lot to see there!

PROBLEM: We had to get upstairs to the area were the instruction was to take place. Getting Joey past all the “children’s” books and toys is one thing. Getting ON the escalator is another.

SOLUTION: Sue-you do it! She rocks!

Last challenge fun activity of the day: get back to the car.

PROBLEM: It’s still snowing and raining but now very cold and windy.

SOLUTION: Sue says, “Cindi, I’ll wait here with Joey while you get the car. I valet parked, so once you pick him up, I’ll get my car and go.”

What’s so hard when you have a second pair of hands?

The day and evening date with Joey ended with a nice ride home and a very cooperative time getting him changed and into bed. He literally flopped into bed! And so did I!

“Our story”: After doing our research, getting our answers, and getting some shopping, shows, and restaurants in the mix, I told her I’d really like to attend Moody on Sunday. She liked the idea and we made our plans to attend – but the very most important thing, that I’d like to share, is what happened upon our visit.

A lovely couple escorted us to a Sunday school class and while many women said hello to us, there was one who stopped to talk for a bit. After learning Kathleen’s possible plans, she offered her contact info so we would have a starting place should Chicago be in her plans. Kathleen and I were very impressed by that gesture.

What happened next couldn’t have taken us more by surprise.

We haven’t heard an organ in years. For me that was very welcoming but I wasn’t sure if Kathleen would share my enthusiasm. (To my surprise, she liked it!) We marveled at the beautiful church, the seats that have probably welcomed many different kinds of people from all walks of life, and then sat down.

When we learned that there would be a children’s play, I was a little disappointed because I really wanted to hear Erwin Lutzer preach and wasn’t sure we’d get to – but we were willing to receive whatever our time there would hold. Yet, within the first song of the children’s play, Kathleen and I were tearful and “in” to the message of the play and the wonderful job the children did in their performance.

The first song had lyrics to the effect of, “If you want to be a star, you gotta have the face, the looks, the STUFF.” If we’ve talked about that with Kathleen concerning her major a hundred times, I wouldn’t be exaggerating. The fine line between what the world sees (outward appearance) versus what God sees (the heart) is something of which she is fully aware and yet struggles knowing that she has to have the right “stuff” to get noticed. When auditioning, a beautiful tall brunette will not get cast if they are looking for a petite blonde or a funny red-head. It’s all so subjective. The opening song had us tearful. Not because we were sad, but because we could see that God had placed us in Chicago, in Moody, in those seats, on that day, for a reason. And we still had 2 hours to go! J

The CHRISTmas play story-line: Little Leon (Noel spelled backwards)had been overlooked and ignored by the director of the CHRISTmas play….and in fact was the ONLY kid not to get a part. Kathleen, as a senior, was recently the understudy for a fellow senior student for a college main-stage play. Most college students know that it’s…. well…. insulting professionally – to be a senior, understudying a senior and knowing she would not get to perform even though she’d done all the work to be ready just in case. And she in fact did not. The few opportunities she’s had to perform at her college have been on the smaller stages that few attend – including few of the teaching staff. Most kids (it seems) get at least one chance on the big stage, but so far, that has not happened for her. She has one quarter to go and she feels she may be the only student never to perform on the main stage in her four years there. (As parents, we’ve recognized and shared with her that the plays she did get to do were “right” for her, but I’m sure you can imagine that while she understands that, the facts are still the facts – and she’s not been cast for the main stage.) So, both Kathleen and I very much related to the character in this children’s play as well as his dilemma, disappointment, and dismissal….being the only person not cast.

The “wise-men” in the play told Leon (if he actually got to do the understudy role of the Inn Keeper who had but maybe 5 words to say, that he could “ad-lib and improv” the few words he had to say.) Oh my! We were in Chicago for Kathleen to check out improvisation. She looked at me as if to say, “Did they know I was coming?”

Long story shore: Leon of course got the chance to play the part of the Inn Keeper (and instead of dismissing Jesus, improved his lines and gave Him his room!) and became the star of the show – not because he played his role perfectly, or that he planned to be the star, but because he recognized who Jesus was and the whole story (and his life) was impacted because of his improvisation – and the rest is history! Well, Kathleen has heard from Joe and I (more times than any kid wants to hear!) how God will be the one to put her in the right place at the right time doing the right things for the right reasons. Just like Leon. We’ve seen God do it in our lives and in Kathleen’s many times, but we often repeat “lessons that need to be learned!” Well, we don’t know if she will in fact get to be in a play her very last quarter, but we do know that God has it all under control. And she knows that, too. She just needs to patiently wait for all that is “right”.

Finally, Pastor Lutzer shared a message (I was so happy to get to hear him!) using the words “despite discouragement, “ “lowly,” “overlooked,” and gave many wonderful examples that will serve Kathleen and us in the months to come as we help her patiently wait to see what God’s next step for her will be.

Our visit could not have meant more to us and we certainly couldn’t have planned or anticipated it to be any more perfect. We left feeling that God had met us very personally, and I know it was just what we both needed to hear. Waiting to see how it will all be played out in these next 5 months will be very interesting!

We were grateful for the message, the wonderful musical play, the many people we met and the “part they played” in our lives that day!

www.kathleenferrini.com
www.cindiferrini.com

One night she was very anxious about a test the next morning. She is a straight A student and worries a lot about her grades. She was making an A+ in this particular class and had been studying very regularly for the test. However, she was in tears that she might fail the test, which in her mind is anything below an A.

As she was crying, I was thinking, “Are you kidding – you’re a straight A student? It’s just a stupid test and you’ll probably ace it anyway. C’mon. This is, like, so Junior High. Just snap out of it, will ya?”

She could tell I wasn’t listening. She could also sense what I was thinking by the look on my face. That not only made her pull away from me, it now added shame to her feelings of anxiety.

How do you think God listens to us?

Do you think God really listens to our prayers, or do you think He skims them the way we skim blogs, listening for the big ideas? “Okay, what do we have today – ‘new job, ‘need patience, ‘lust control’ – I got it.” When David fumed about how much he hated his enemies, did his honest emotions make God uncomfortable? Do you suppose the Lord was thinking, “David, asking me to crush someone’s skull is not a very nice thing to say, so stop it.”

I think God wants to hear all our honest emotions. I really think He listens not only to what we pray, but to the emotions behind what we pray. Just before Jesus raised Lazarus from the dead, John tells us that He saw the tears of his sisters and responded to their pain. The text tells us simply, “Jesus wept.”

What’s astounding to me about that passage is that Jesus knew He would be resurrecting Lazarus in a matter of minutes, but He still identified with their feelings. He didn’t say, “Ladies, believe in my sovereignty,” or “Stop your crying and trust Me,” or “Now, now, everything’s going to be okay.” He cried because they were sad.

He wasn’t reacting – raising Lazarus was part of His original plan; it’s why He waited until Lazarus was dead before He returned. He wasn’t manipulated – the sisters’ grief was genuine sadness and even anger at His tardiness. Rather, Jesus was attentive to their words and tears. He listened to their emotions and was moved.

I want to become a man like that toward my daughters, my son and my wife.

M. Scott Peck in his best-selling classic, The Road Less Traveled, said that the greatest way we can show love to others is by listening to them. John Gottman amplifies that thought in his book, Raising An Emotionally Intelligent Child. He says that our kids pick up our values the most when they see how we tend to them when they are experiencing their worst emotions: anger, fear, anxiety and sadness.

I would put it another way. Our kids develop their view of God by how we attend to them when they are emotionally vulnerable. Their understanding of the gospel is largely shaped by their experience of the gospel through us. We show our kids what God is like by how we listen to them.

When my daughter gets emotional now I find myself not praying for the Second Coming, but for Jesus’ example of listening to become real in me.

Ben Burns encourages High School Students to stay strong in the faith – check out his website for more details and for how you can invite Ben to YOUR school! www.gradguides.org

Perhaps some of the most difficult thoughts going through the minds of parents when first hearing those words are:

• What are we going to do?
• We know nothing about raising a child with disabilities. How will we know who to contact for help?
• What are the steps needed in his/her development to get them to where they can be at their best potential?
• How do we talk to doctors, teachers, etc. when we don’t know the “lingo”?
• Will there be someone to walk us through how to make contact with agencies that can be of help to us?
• How will the siblings handled things?
• Is there a way to prepare for schooling for my child and the meetings that are needed?
• How can I handle all the paperwork that is required for hospital stays, doctor visits, and therapy appointments?
• What if this child dies? How will I handle the emotions, the grief, the planning of a funeral?

For many of us, whose child with special needs is grown, there was little “out there” to address any of the above questions. It took many phone calls, trial and error, asking hundreds of questions, talking to other parents, and many hours of hard work to get the answers we needed.

Jolene Philo in Different Dream Parenting addresses and answers each of the questions above and so many more. Her book is a resource that will cut down your time and effort because of the homework she did for you. She deals with facts and feelings, equipping and education, has researched so you can be organized and productive, introduces you to great resources, and leaves no stone unturned as she brings the reader from chaos to calm. If you desire services, governmental programs/assistance, encouragement, resources, education, church related help….well she’s covered it all.

Hot off the press from Discovery House, this book will answer your questions, encourage you in your parenting, and set you up for success. Few books will guide you like this one will!  More valuable information can be found through: www.DifferentDream.com and you can purchase the book through Amazon, at the Barnes & Nobles website, via christianbook.com, and the publisher’s website www.dhp.org. It “delivers”!

Authors: Joe and Cindi Ferrini

(Articles, books, access to interviews at the end of this article)

 MARRIAGE MATTERS-and so do other relationships!

Imagine five people lying side by side on the waterbed, Lavoie said. If one person moves the whole family feels it. “If there’s a special needs child, that bed can really get moving.” A learning disability can also create discord in a couple’s marriage, he said. The divorce rate in the U.S. is 50 per cent. But in families with a learning disability it’s closer to 70 per cent. (Authors note: and since then some say, 80%)
Sarnia Observer (Ontario), 11/8/05 

Because of these statistics, many are single parents, but whether single or married, we need the support of others.

Building a strong marriage needs to be done in all aspects of that marriage:  emotionally, physically, and spiritually – and its hard work! This short blog will share some tips that will also coincide with the INCLUSION FUSION Nov. 3-5. A “stay at home” conference with Key Note speaker Chuck Swindoll: http://drgrcevich.wordpress.com/2011/09/07/announcing-our-keynote-speaker-for-inclusion-fusion-2011-chuck-swindoll/

In order to make marriage work, Joe and I have had to Divide and Conquer! That would mean splitting up and one of us accomplishing something while the other “mans the fort”. It’s not always our first choice, not fun, but it’s what works! The idea for YOU, is to consider how this technique would work for you. Here are a few ways we made it work: 

1-      In the early days, one of us would go to church. The other would stay home with Joey (and our girls, sometimes). The one at home would bundle up and pack up the car with the children, meet whoever was at church and trade places. That worked during those years when we could have Joey with us IN church and when there was no place to put him AT church.

2-      If Joe was asked to speak somewhere or meet with someone, I’d be the one to manage things at home, and he would do the same for me when I’d have opportunity to go out.

Additionally it’s important to Pamper Your Marriage!  We can’t do life as usual for very long without some kind of relief from the pressures of caring for another’s full-time needs. You can join at INCLUSION FUSION for the full topic, but here are a few ideas to make marriage work when one is caring for another with special needs:

 Plan intimacy

 Take time to sit and talk, hold hands, take a walk

Grocery shop together and make a recipe together.

Plan a weekend away when you have opportunity. Just don’t forget to come home.

Talking Things  It Out is crucial to a marriage. That takes time. Here are a few ideas (more will be shared at INCLUSION FUSION) that will help you think what might work for YOU:

 Write out “care issues”

Talk through decisions until mutually coming to an agreement (working through smaller pieces of the decision rather than the big chunk)

Offer solutions without judging or jumping to conclusions

Show respect for each other’s ideas

FAMILY RELATIONSHIPS certainly include extended family – the children we have and our own siblings. This relationship can be tricky because we to accept help but not take advantage of those who offer help.

We wanted all of our own children to be treated the same but knowing there are some things the person with special needs would need that they won’t. Because of that, we were careful not to ask or expect our own children to care for our son unless we asked them to do so like we would of a babysitter, and then followed through with also financially compensated them. We never wanted them to feel obligated all the time to care for their brother.

We made sure to have family rules, which included the Golden Rule in Matthew 7:12, “Therefore, whatever you want others to do for you, do so for them” and Mark 12:31, “You shall love your neighbor as yourself. There is no other commandment greater than these.” If we could follow that, we thought we’d be able to set a good example for our children, neighbors, teachers, etc. Also, we always desired to work as a TEAM (Together Each Accomplishes More).

Family meetings and goal planning were always tops on our list as a family, so we knew we were all on the same page, and no one could say they felt left out or unimportant. Everyone had a “say” at our meetings!

OTHERS:Friends , teachers, aides, administrators, people at church (see: http://www.keyministry.org/  and http://www.joniandfriends.org/church-relations) are folks to keep near us for the well being and help in development and learning of our child with special needs. Our goal? BUILD BRIDGES rather than BURN BRIDGES. These people will give us help in getting to the next step of life. Not everyone will be able to help and be a part of our child’s journey, but it’s important to give as much help and advice (to those willing to learn) so they can be of help and assistance for YOUR life journey. Not all advice we will receive will be helpful, but we can accept it, try it, and use what works – disregarding the rest.

We look forward to being with you Nov. 3-5 at: http://drgrcevich.wordpress.com/inclusion-fusion-2011-speakers-and-topics – join us, will you!?

Articles by and Interviews with Joe and Cindi:

Familylife Today – 3 days of programming called Unexpected Journey from their book (2/09) UNEXPECTED JOURNEY – WHEN SPECIAL NEEDS CHANGE OUR COURSE

June 29, 2009 Dennis Rainey and Bob Lepine interview Joe and Cindi on FAMILYLIFE today radio. Topic: Facing a Painful Reality:
http://www.familylife.com/site/apps/nlnet/content3.aspx?c=dnJHKLNnFoG&b=3789887&ct=7133605

June 30, 2009 Dennis Rainey and Bob Lepine of FAMILYLIFE TODAY interview Joe and Cindi. The topic is: Embracing Life’s Changes: http://www.familylife.com/site/apps/nlnet/content3.aspx?c=dnJHKLNnFoG&b=3781143&ct=7048085

July 1, 2009 Dennis Rainey and Bob Lepine of FAMILYLIFE TODAY interview Joe and Cindi on the topic, “Love: A Day to Day Assignment”:
http://www.familylife.com/site/apps/nlnet/content3.aspx?c=dnJHKLNnFoG&b=3781143&ct=7133605

Online Broadcasts:

Start Your Family: Becoming Parents of a Special Needs Child: (An interview with the Ferrini’s)

http://www.startyourfamily.com/2009/05/becoming-parents-of-a-special-needs-child.html

Need Project: – UNEXPECTED JOURNEY: (Ministry NEED PROJECT)

http://www.needproject.org/casts/podcast1033.mp3

Focus on the Family

FOCUS ON THE FAMILY –Special Needs and Marriage – module of 1 overview and 6 articles in a series for their on-line magazine: http://www.focusonthefamily.com/marriage/marriage_challenges/special-needs-and-marriage.aspx

Excerpt Article from UNEXPECTED JOURNEY – WHEN SPECIAL NEEDS CHANGE OUR COURSE – one article in a series: http://www.focusonthefamily.com/parenting/parenting_challenges/parenting_a_special_needs_child.aspx

RADIO: Focus on the Family interview taped July 20, 2011 for airing January 2012.

BOOKS:

Unexpected Journey, When Special Needs Change Our Course – Dr. Joe and Cindi share their journey of caring for their son with special needs and their parents with Alzheimer’s.

Balancing the Active Life – an interactive Bible study for anyone of any age – the goal of this 13-week study is to challenge and encourage the participant to prioritize the activities they believe are the most important in their life, with Christ being the center and the focus of all that they do.

Get it Together – an organizational planner

‘Tis the Season – a Christmas planner to keep the holiday less stressful and more meaningful

Online Broadcasts: 

Start Your Family: Becoming Parents of a Special Needs Child: (An interview with the Ferrini’s)

http://www.startyourfamily.com/2009/05/becoming-parents-of-a-special-needs-child.html

Need Project: – UNEXPECTED JOURNEY: (Ministry NEED PROJECT)

http://www.needproject.org/casts/podcast1033.mp3

WEBSITE: www.joeferrini.com

                         www.cindiferrini.com

Email us via our website!

A sleek hairstyle before noon – or realistically, until Sunday, and then don’t count on it!

Sleep – for a few years – OK, maybe even up to 20 years…hmmm….maybe more. It will depend on many factors.

Manicured fingernails and/or pedicured feet and nails even for special occasions.

Time of your own to do as you please – ever.

Clean clothes without permanent stains.

Money for you to pamper yourself.

A full conversation with your spouse, a friend or even with the deli-worker.

A clean and tidy home that is always in order.

Clean windows.

Calm and order.

To finish your thoughts.

CONSIDER HAVING KIDS IF YOU:

Like the “wind-blown” or “Au Naturale” look in hairstyles and clothing!

Can sleep with one eye closed and one open and call it a good nights’ sleep!

Like a mani or pedi that lasts for 2.5 weeks – AKA chipped nail polish.

You are willing to give of your time, talents and treasures, because kids will take it ALL….all through college. Remember: The sucking reflex is common to all mammals at birth.

Like vintage clothing (AKA garage sale specials, hand-me-downs, and thrift shop deals…) for YOU, not just them.

Can consider the fingerprints on the windows as part of the art collection you wish you could afford for your focal point wall.

Can get into the groove of chaos and commotion – AKA “hold on for the ride!”

Know you and your spouse will need to “talk later” and can postpone that conversation indefinitely!

Don’t care about finishing a sentence, a thought, a sandwich, a meal, a book, folding a full basket of laundry, emptying the dishwasher in one attempt, having a full phone conversation, getting a once a week date night, etc.! (Once you hit menopause, it will all blend together and you will simply forget what you started or simply not care. Trust me.)

You want GRANDCHILDREN…because then, you just start it ALL OVER, and you will be amazed at how much fun it is….AGAIN!

I watched the less than 3 minute answer Pat Robertson gave when asked: “My friend’s wife has Alzheimer’s and does not recognize him, he is seeing another woman because of this, what should I tell him?” You can check out the link to hear his full answer. It won’t take long: http://www.cbn.com/media/player/index.aspx?s=/mp4/BIO_091311_WS

Robertson gives us plenty to think about in his short answer, but I believe if we take our marriage vow(s) seriously, we will bow to the vow. Sacrifice, yield, commit, bow to the vow(s) we shared. Pat Robertson talked about how hard it was to care for “someone like this.” It’s more than hard. It’s self sacrificing. It’s exhausting. It has little reward because the person you care for doesn’t have the potential or capacity to give anything in return. Anything. I watched Mom care for Dad for over 6 years along with my 2 sisters and I. We lovingly sacrificed our “own plans” and spent countless hours changing dad’s diapers, giving him haircuts, staying at his side during numerous nursing home or hospital stays, feeding him, trying to make sense of non-sensible thoughts and words, yet always choosing to bring him home to where he seemed to be most calm (i.e. less agitated and frustrated. Less being the operative word). The home that accommodated my dad, the family care-givers and a night time care-giver – so Mom could sleep – was remodeled to accommodate his hospital bed, walker and eventually the wheelchair, and other needs.)

Accommodate: To make fit or suitable; to adjust; to provide with something needed; obliging. To help understand “accommodation” as it relates to Alzheimer’s is rearranging your whole life to help someone besides yourself to be comfortable and well cared for.

While I don’t agree with much of what Mr. Robertson said, I do agree that it’s hard. The person “isn’t there” most of the time, but sometimes they are, and when they are, you grasp that moment and savor it. We didn’t stop caring, helping, or visiting just because there was little to no response from Dad – or because it was inconvenient, hard, or wasn’t fun. It was never convenient – it was always hard and it was seldom fun. Picture changing an adult diaper; picture an elderly person throwing a temper tantrum and food or objects. Picture yourself helping. Can you do it for the long haul? Even if the long haul includes daily visits to a care facility that can help you?

I suspect Mom’s 6+ years of care-giving may have precipitated her early death (heart attack at age 69)….Dad giving up and following his bride in death just 5 days later. But each of us did what we did because of one thing: LOVE – which when sincere and genuine carries with it a commitment. It was hard. Very hard. But love was stronger than the challenge. It always is. Robertson’s response takes me by surprise given his years of ministry. I understand the bible to teach that (true) love never fails…is patient, kind, does not seek its own, bears all things and hopes all things…to share a bit of I Cor. 13: 4-8.

As difficult as those years were, we were somewhat prepared having cared for our son with special needs (who is now 30). Would we walk out on him? Not a chance. God never said it would be easy, fun, or comfortable. Less than a year after my parents’ deaths, Joe heard the doctor say, “Your Mom has advanced vascular dementia.” We had a new, but not so different choice to make: stay in the game, sit on the side lines, or leave. It took but a moment to catch our breath and get back in the game. AND….wouldn’t we all hope that our spouse would desire to stay in the game and care for us…for BETTER OR WORSE – and bow to the vow? I know I do.

©Cindi Ferrini, www.cindiferrini.com

I was eager to see if there would be a follow up broadcast to that comment. Indeed, LeBron later apologized for using the “R” word saying, “If I offended anyone, I sincerely apologize.” I’m pretty sure I can stand in the front of the line with many whose children have special needs and say, “It’s not IF you offended anyone.” You did.

When that word is spoken, those of us in that “circle” try to be gracious to spare others embarrassment -  but we hear it. And we heard you.

The apology would have been better phrased, “To those who care for the special needs population of the mentally disabled/challenged (mentally retarded), I am very sorry for my insensitive comment. I understand my comment may not be understood by those who are challenged mentally, but I do understand that I have deeply offended those who care 24/7 for those with special needs of this kind.’

Furthermore, I would love for LeBron (and others who use the “R” word) to offer public service to those who are mentally challenged, to learn what the special needs world of “effort” looks like. Those who have trouble learning, speaking, holding or throwing a basketball or baseball have likely spent hundreds if not thousands of hours in PT (that is Physical Therapy), OT (Occupational Therapy), and SP (Speech Therapy) only to get to a less than hoped for outcome after many years of hard work. These therapies are not working out to better prepare an athlete after a sports injury, rather these therapies are helping the patient to learn to do some of the very things we take for granted. OT helps those who are mentally slow to learn to use their fine motor (fingers and hands) skills for something as noble and simple as feeding themselves. PT was very helpful in teaching my son to balance because he couldn’t sit up on his own – that took a good year and a half to accomplish that one skill. ST was something that took some 12 years in the making to get my son to a point where he could make and form words. Just 12 years.

Yes, all those things took place at the rapid speed of what Webster calls retarded: “slow or limited progress.” Many who are “mentally challenged” or “retarded” have worked like an athlete to achieve little to no recognition; instead they’ve earned the cheers and applause of their parents, siblings, teachers, therapists, (and some family and friends), as they accomplish the mundane.

I could write on and on, but everything else has already been written in the book my husband and I authored: UNEXPECTED JOURNEY-When Special Needs Change our Course. If LeBron is man enough to ask for it and brave enough to read it, I’d send a copy to him free.

“SHARE” this message and let’s see if he’ll ask. Until then, I commend and applaud those caring for those with special needs. May you “go the distance” with grace and dignity - because I know it’s not with ease or comfort!

And JFYI – I’ve waited 30 years to write this – and it’s written with hope to initiate change in how the the “R” word is used.

One who knows,

Cindi Ferrini

www.cindiferrini.com

I’m often tempted to say that! I want to say that when:

• When things aren’t going my way I think, “Wow, if I could just get a life!”
• When frustrated, I sometimes say, “This is life?”
• As a young mom changing diapers I’d catch myself thinking, “This is not what I thought children were going to be all about. I wonder when I’ll get a life.”
• When our son wasn’t developing on schedule and we’d be doing the same therapy for the trillionth time, I’d sometimes say, “I just wish someday he’d get this, and get a life.”
• When others don’t get in line with our wishes we sometime say, “I wish they would get a life!”

I guess it’s true that the grass is greener in someone else’s yard, but do you ever feel stuck in yours?

It would be such fun to be able to pick up and take off – to the other side of town for dinner – without calling on someone to care for our 29-year-old with special needs. It’s not an easy task to find someone to “fill that bill.” A teenage (boy or girl) would not be appropriate to watch our grown son. A “service” to bring a stranger to care for our son (who would not be able to tell us if anything went wrong), is not a comfortable option.

I’d love to be able to travel with my husband like we had dreamed when we were younger. But if a night out is hard to accomplish, a week is not much easier. And it would be such a treat to say “yes” to friends who are going to see a movie or go to a play – last minute!

Oh…If I could just “Get a LIFE!”

But, while the grass is often greener on the other side, I face the fact that life is different for us than for some of those around us and that we have choices to make. And for us (and you) choosing what we feel is right means choosing what we value. It’s that simple and it’s that complicated.

In our society we want to fix things so life is not interrupted or inconvenienced. If we could take a pill to make everything perfect, we would. Because no pill can cure us from challenges and struggles, we have to decide what we value because that’s how we’ll decide what we’ll do. For us the reality and choice was valuing and caring for our son, and the knowledge that doing so would last a lifetime – either his or ours.

So how does that look today? As a woman who now has grown children and one grandchild, I thought I’d have outgrown this saying, but sometimes I find myself seeing others in retirement doing what we’d hoped, and hear myself saying, “I wish I could get a life!” But on good days – and most of them are, I realize that all of us have times when things don’t go our way, and we all have to “grow up” and learn to go with the flow. I occasionally get frustrated, or feel sorry for myself, but see many of my friends do too – their frustrations are just a different flavor. And, we all look back on those mundane days of childrearing – doing the same thing over and over again with much fondness, and sometimes with a secret wish to return to or re-do a few of them!

I realize I do have a life. It’s one that includes caring for our son who has brought so much to our marriage, family and life. It’s about being tethered to home more than we thought we would, but being able to look out over our beautiful wooded back yard and say, “I’m pretending to be on vacation today,” while reading a book and sipping my Café Vienna, or actually traveling somewhere but keeping in mind the pace will be very slow with Joey at our side. It’s about being thankful for a sweet handful of family and friends who stand in the gap to care for our son when we have opportunities to speak at conferences or for ministry. It’s about recognizing we’ve met wonderful people that we wouldn’t have, had Joey not been given to us. It’s a romantic dinner for three, which still means I don’t have to cook!

Yes, I’ve come to realize that while we all want to “get a life,” we wind up finding that the phrase just needs to be reworked: “This IS our life!”And it’s really pretty special.

Perhaps you have learned as I have, that prayer is conversation with our heavenly Father, and we have the privilege to communicate with Him whether on our knees – reading the bible and praying, or while driving around town and running errands. There are times where focus and attention must be direct and purposeful and I am called to be quiet and listening and other times, I can be “thinking” and praying at the same time, but not with the same kind of attention as in my quieter moments. I know God wants to hear from me at all times, and He is always ready to listen. He also tells us that we should:

• “pray without ceasing” (I Thess. 5:17)
•  Sometimes we pray in secret (Matt. 6:6)
•  Other times He asks us to pray publically
•  Pray for one another (James 5:16)
• Pray for those who suffer (James 5:13)
• Devote ourselves to prayer (Rom.12:12)

How we are doing at what He’s telling us to do? Do you know someone who needs prayer? Let’s get busy and stop fidgeting!