My mother-in-law needed heart surgery. We went together to the doctor to make sure all her questions were answered. We wanted to know why she needed the surgery and how it would affect her afterwards. We wanted Mom to know exactly what to expect from start to finish. The doctor described everything to her and said, “When you wake up, you’ll feel like a truck hit you, but each day you’ll do better and better and heal well.” After surgery, I asked mom how she felt and she replied, “The doctor said I’d wake up and feel like I was hit by a truck. That’s true, I do, but we failed to ask what size truck it would be!”

That is reality! Reality is sometimes a shock.

Sometimes we just don’t know what hit us, and we can’t anticipate what the outcome will be when we don’t know what is then ahead of us. In her case, healing took time, but eventually she experienced better health and better quality of life.

When caring for someone with special needs, operations and medications will often improve health or quality of life but not cure the individual or change the course of that person’s life to make her or him what we’d call “normal.” The reality in this case is summarized in this question: Will we be able to run the race set before us or crumble under the weight of this responsibility for a lifetime?

It doesn’t matter who we are—rich or poor, healthy or unhealthy, good-looking or not, well-dressed or shabby, happy or sad, motivated or unmotivated, talented or untalented. When God wants to do something in and through our life, look out! That’s when reality hits!

As a mom, the reality for me is the day-to-day grind of life and the realization that we have no con­trol over it, and that nothing will ever be the same. That part of life we didn’t see coming our way. That part of life, when it hits, we wish hadn’t—if we’re truly honest. If we are open to learning, it’s in that reality where God will give us new vision – a bigger picture as we walk through the tests and the storms that challenge us. Until we are willing to become active learning partic­ipants, we flounder, trying to figure out what’s going on.

It was the reality of caring for our son, and the knowledge that doing so would last a lifetime—either his or ours! Our son has learned and grown, but the pace was so slow that we often wondered if anything new was taking place. Reality is never what we expect. No matter what the reality looks like, it is likely a surprise. And what one of us would have chosen it?

What I’ve learned with each new reality, is that listening to God, my heart, and taking time to learn what will be needed, will eventually help me sort things out. I’ll learn, I’ll grow, and somewhere down the road of this journey, I’ll have a new level of understanding of life because I’ve embraced my new reality. Is it easy? Never. Is it worth it? Always! That’s reality!

BOSTON (AP) 11/10 – “LeBron James said he was sorry for using the word ‘retarded’ in a post game news conference.” I know it’s been a while since this was “news” but the “R WORD” hasn’t gone away, so it’s still news….current to each of us who has a child with mental “RETARDATION.”

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 he offended anyone.” He 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 him.

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 and dollars 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. There is also another group who’s worked hard and 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 over 30 years to write this – and it’s written with hope to initiate change in how the “R” word is used.

One who knows,

Cindi Ferrini

Meal preparation once was and can still be a nemesis for me: selecting the right balance of nutrition, preparing the meal and expecting my two daughters now 4 and 5 years old will value my efforts and the nourishment to their bodies.

My first born rejected eating at three weeks old. Doctors diagnosed her with a failure to thrive with no significant reason why. The specialists inserted a feeding tube through her nose. I fed her formula on a regimented schedule until she was 17 months old.

In the hope that she would switch from formula to solid foods, I diligently applied a regiment of integrating solid foods just as one might do with any other child. I sought the help of feeding specialists. My daughter would have nothing to do with drinking liquids except water. Without liquids, she failed to intake enough calories from solid food to grow well.

There was always a struggle to entice her to swallow. The primary setback came from her lack of hunger. She also battled the influence of the annoying plastic tube running down the back of her throat. I was taught by experts, mealtime had to be fun and social.

Esther Daly is a great eater today. She happily consumes a balanced meal from a large variety of foods. Having a backyard garden has contributed to her success greatly.

As the mommy I supply and encourage the consumption of life sustaining balanced nutrition. I also become the primary giver of her spiritual food as well. The same passionate, fun-filled efforts I put toward her caloric intake I also channel in to her spiritual formation.

Jesus answered, “It is written: ‘Man does not live on bread alone, but on every word that comes from the mouth of God.’” – Matthew 4:4

What does a balanced meal of spiritual food look like? As I think on the meals I prepare I also think on implementing a regiment similar to this:

• Whole grains: I liken whole grains to walking humbly with God (Micah 6:8). When we live humbly with God as the central focus of everyday life, He is our daily portion of peace, perspective, and provision (Psalm 73:26). He is our sustainer (Psalm 54:4). When we eat processed grains like pride or self-reliance, the empty calories allow us to function but fall short in feeding us the valuable vitamins and nutrients we need for deep peace and joy.
• Fruits: I liken fruits to loving mercy (Micah 6:8). The taste of love is juicy and sweet full of powerful nutrients to fight against intruding evil (Luke 6:27-36). Our love we give freely to others interrupts impending ugliness offering compassion and forgiveness. Love fortifies our hearts against bitterness toward injustice (Ephesians 6:12).
• Vegetables: I liken vegetables to acting justly (Micah 6:8). Vegetables feed us the vibrant truth of God’s goodness. Being obedient to His Word, the Bible, renders us blameless and pure without fault (Philippians 2:15).
• Beans, nuts, and meat: I liken proteins to acting with Godly wisdom (1 Corinthians 2:13). Feast on the protein imparted by the Spirit of God. In all circumstances seek the Lord in every way (Ephesians 6:18) for His spiritual truths. Do not rely on your human wisdom to speak of spiritual matters.
• Milk products: I liken milk products to courage to believe and trust God (Joshua 1:9). Faith pleases God (Hebrews 11:6). Our courage to trust God comes when we feed on HIS rich, creamy goodness. Our culture tells us that whole milk, cheese, and butter are bad for us. The world encourages us to feed on manmade imitations – IDOLS.
• Oils: Similar to hope (Hebrews 3:6). All we do should magnify Christ and Him crucified. We accomplish this by closely holding on to the hope of our salvation and the promise of everlasting life. Oils anoint us to carry out the work to build up the body of Christ to maturity attaining to the whole measure the fullness of Christ (Ephesians 4:12-13).

Jesus, our Shepherd, challenged the Apostle Peter three times.

The third time he said to him, “Simon son of John, do you love me?” Peter was hurt because Jesus asked him the third time, “Do you love me?” He said, “Lord, you know all things; you know that I love you.” Jesus said, “Feed my sheep.” – John 21:17

If we forgo feeding proper spiritual nutrition to our children and opt instead to feed them with artificial, processed food, we starve our babies of the nourishment they need to grow in character and love for our Creator.

Love the Lord your God with all your heart and with all your soul and with all your strength. These commandments that I give you today are to be upon your hearts. Impress them on your children. Talk about them when you sit at home and when you walk along the road, when you lie down and when you get up. Tie them as symbols on your hands and bind them on your foreheads. Write them on the doorframes of your houses and on your gates. – Deuteronomy 6:5-9

It’s been a while since we all came to know SUSAN DOYLE who auditioned for the “Britain’s Got Talent” show.

The surprise of it all………….how did YOU respond?

I couldn’t help, initially, feeling sorry for her – first because she didn’t “look” the part all of us were expecting; then because she had to listen to the jeering and sneering of the unforgiving crowd and judges – how impolite, rude and mean. She certainly didn’t “look” like she’d be able to sing like she could, but she hadn’t even been given the chance to “prove herself” before the laughing and jesting began. Certainly she “showed” us all what she had to offer. I was personally happy to hear the judges make an apology for how they and the audience misperceived her!

Recently someone called, telling me of a young special needs pre-teen being teased by classmates. They were concerned about the “bullying” and negative comments and how their child would ever be able to rise above all the hurtful things people were saying. Upon my request, they proceeded to tell me some of the wonderful attributes their child with special needs has: kind, forgiving, patient (most of the time), never desiring or thinking of “getting even”, and so on. It’s too bad, isn’t it, that while this child can’t read, do math, or speak very well, they have such redeeming qualities that would rival those bullying. Might you, I, or those bullies wonder what this young person has to offer that others aren’t taking the time to notice?

It’s my hope that we’ll take notice of one young person overcoming some pretty amazing odds. I also hope we’ll look around us to see how we can appropriately respond to others who are different than we are, taking the time to learn what they have to offer before passing judgment or being critical.

Here are some thoughts to consider and questions to ask ourselves about others with “special differences”:

• How will we respond the next time someone different from us comes across our path?
• What are the redeeming qualities this person possesses?
• Can we find something worthwhile this person does or is that will help us see them differently or better?
• How can we encourage this special person, no matter what their abilities are in order for them to become all they can be?
• Let’s be an example for others to follow by not pointing, teasing, and otherwise making fun of those who are different from us.
• Hopefully we can use positive and encouraging words to move this person to succeeding to the best of their abilities.
• May we refrain from jeering and sneering, which is rude, mean, insensitive, and impolite.
• Open our hearts to looking for the positive character traits one possesses rather than the abilities they are lacking.
• Matthew 7:1, “Do not judge lest you be judged yourselves.” That sums it up!

Remember: we can’t judge a book by its cover – and shouldn’t.

Going through airport security with our son Joey can prove to be interesting. His special needs requires us to “prompt” him to take off his shoes, “prompt” him to move forward, “prompt” him to go through the x-ray on his own. He listens, usually, but basically needs prompts.

We have our routine.

Joe put his things and Joey’s into the bin and sends the items on their way. At the end of the process, Joey obediently puts his shoes on. But this time, he kept tugging at the back of his left shoe, saying, “It’s not right.” We checked the shoe and all seemed fine, so we tied the shoestrings, and started moving him down the concourse to our designated gate.

Several times he mentioned that “it wasn’t right” but we all kept walking.

As we prepared to get something to eat, he sat down, and once again mentioned very nicely that “something was not right.” While I went to get us a sandwich, I asked Joe to please check Joey’s shoe. Joe came back to tell me that, indeed, something was wrong…he had accidentally put his watch in Joey’s shoe instead of his own as it went through security screening!

What a great reminder of the importance for those of us caring for one with special needs to be attentive and alert to things they tell us – verbal or non-verbal. It’s important to understand their facial expressions, their behavior or misbehavior, and as we stop, look, and listen to what we are observing and they seem to be saying, take action to solve their situation if we can.

Often, even the non-verbal person will have expressions that we can read just by looking into their eyes. We can see trust of the lack of trust; joy or sadness, frustration or contentment. And I think they can read our non-verbal communication as well.

That day was a reminder to me to listen and observe well, and not just keep on moving!

Next time? Yes, we’ll “watch it!”

In the framework of those whose lives are often dismissed, ignored, disregarded, neglected, slighted, snubbed – those with special needs, I wonder how often we really take a mental walk to walk in their shoes?

Perhaps you, like I, have missed the opportunity to show compassion or love to someone simply because they have special needs and we don’t know and don’t seek a way to connect with them. Perhaps we have no idea how to engage in conversation with them or their caregivers – no idea how to, well, walk a mile in their shoes!

When our son was a few years old, my husband was finally able to express his fear and disappointments regarding the handicaps and challenges that were a part of our every day existence and of concern to us and our sons’ care. It wasn’t easy for him to share his heart, but did so through tears, only to hear the cutting words of the listener, “I thought you were tougher than that.” That was the last time he shared anything about our son with that person, and for that matter, with few others for many years.

If we truly walked a mile in other peoples’ shoes, we’d quickly understand what they have to deal with. We’d become aware of the hot button issues that tick them off, and we’d become sensitive to what makes them tick. We wouldn’t have all the answers.

We wished we could have had people to talk to when our son was small.  The people we reached out to were probably not equipped to mentor or help us. For that reason, we desire to mentor couples with young children – or any aged children who have special needs, to listen to their challenges, to cry with them, and to encourage them.  Sometimes listening to their struggles is difficult because we relive in our minds the complexities of our early years; however, the positive outcome is that with the help of the Lord in our lives, we are making it; and in turn we can give others help and encouragement to make it, too.

Every time we feel as if we want to quit, we remember that we are called to this purpose and that God did not make a mistake. Maybe we can help others who have a similar life situation as we do but who are a few steps behind us in their journey, or perhaps we can simply be one who’ll provide a listening ear if we are not in the same life situation. We just need to be willing…willing to extend the love and compassion that person needs for the moment.

Ask yourself:

• Am I willing to be a listener to someone who has a challenge different than my own?
• What would it take for me to approach someone with special needs (and/or their caregiver) and ask how I might help or pray for them this day?
• Might I offer to assist in a “caring” capacity at church by watching a child with special needs (thus allowing the parents a time of uninterrupted time to sit in church together?)
• Take a moment to observe what you see. What must their lives be like? Sit quietly and contemplate how you would “do” your life, given what you are observing. Then take a moment to contemplate the things you aren’t seeing (meal times, bath routines, temper tantrums, sleepless night, medical issues, etc.)

Remember that a care-givers’ work is not 9-5 but 24/7. We might just provide them with the love and compassion they need to keep them going…all because we took some time to WALK A MILE IN THEIR SHOES.

Returning to my seat at the airport gate, Joe motioned with his eyes, for me to observe the three people sitting just in front of us. Their backs were to us, so I did not readily see what he was trying to tell me. He quietly said, “Just watch, I’ll be right back.”

Within moments, the 45-50 year old man began conversing with the elderly couple in their late 70’s to early 80’s – more than likely his parents. The son stood, and wobbled away with mom following after him.

It hit me hard: this was Joey, Joe and I in fifteen years; maybe twenty. It was intriguing. It was sad. It was hard. It was educational. It made the future seem all too real.

I could tell the son had difficulty speaking and making his needs known, but what intrigued me most was how little conversation there was between the parents. They did not look at each other. They may have shared 4 words. They seemed quiet, sad, and burdened. I don’t want to be judgmental, because they may have been tired after much travel, or perhaps they were sadly taking their son to a group home where they might never see him again, or perhaps they had said everything they needed to say over the course of these many years of caring. I just know that the picture I was viewing looked and felt sad.

This scenario nudges me to be intentional as I live the days I’m given with our son. I want each day to be lived with fullness, joy, in fun, and yet in the reality that there are “those days” of challenge and frustration, too! I want to live each day that way so when we reach that end stage of life, we can have joy and fullness and fun then, too. I want to embrace life and look for the benefits. IF we do that, we’ll look for ways to appreciate all aspects of life. When I think over the 30+ years of caring for our son (he turns 31 this month!), I’m reminded of the many wonderful things we’ve learned and experienced that one can’t know until there further into the journey…..

• We’ve relied on God, not ourselves, in our challenging situations
• Learned our weaknesses and who we were in the midst of them
• Was clearly able to determine what was realistic about life, what was important, and what to let go – coming to recognize the privilege of serving our loved one
• Learned discipline helping our son develop routines to deal with constant and unending challenges
• Developed flexibility in our attitudes and in daily adjustments, making quick changes often
• Watched our son overcome obstacles that our other children and children around us found very simple
• There have been many wonderful people we’d never have met had we not taken this journey
• Have learned to see the value in every life, not the length or quality of life but its value
• And so much more…….

So instead of fast forwarding the time I have, I’ll excuse myself and go pop that bowl of popcorn the three of us will share – watching the sports game my son so enjoys! “Here’s to the present!”

Do you know who said, “For every laugh there should be a tear”? It was Walt Disney. All of us probably enjoy that thought for great books and storytelling, movies and shows, but for real life, it seems most would prefer laughter and smiles all the time. That makes life more fun and enjoyable, and, well – happy! But if all we did was laugh, and if life was just about having a good time all the time, I wonder how much we’d appreciate it. Sometimes I think we need those deeper valleys of sadness, grief, disappointment, and challenge to really appreciate the times when life is lighter, fun and even outrageously wonderful.

Having shed a good many tears over the years (almost 30) of caring for our son with special needs, I have come to realize that those many tears have also been balanced with many times of laughter – sometimes with our son, sometimes at him or ourselves, and sometimes just because it was the best way to let off the steam and pressure of life that can often be stressful! Proverbs 14:13 reminds me that, “Even in laughter the heart may be in pain, and the end of joy may be grief.” Yes, we might wear a smile on our face yet have underlying sadness, pain, or challenge. Life is difficult, but we can find that the joys and sorrows balance most of life for us.

I used to wonder if God could really give us just what we need. Can we really “make lemonade from lemons” as one saying goes? Does God really open a window when He closes a door? Prov.11:1, “A false balance is an abomination to the Lord, but a just weight is His delight” might just be true as we begin to look for that balance. Before long, we’ll be able to see it more clearly…not being given too much of one thing and not enough of the other, but just what we need.

I’ve had to, over these years, make it a point to recognize, look for, and find both laughter, and tears, joys and sorrows. In human nature, most of us tend to notice the negative and forget about or not see the positive. Here are a few things that come quickly to my mind.

Sorrows

• Not having my son healed
• My son not being able to talk well (started talking around age 12)
• Not having the freedom to do some things because our son can’t participate
• Not an empty-nester, thus can’t do things with our friends who can pick up and go whenever they’d like
• The death of both parents within 5 days of each other
• The loss of all four of our parents and a brother within a few short years

Joys

• How many wonderful people we’ve met because of my son and his disabilities
• My son never says anything unkind or spreads gossip
• We’ve learned to be content in whatever we CAN or CAN’T do
• We realize we’ll have a companion in our son for a long, long time
• We have many funny stories of which to share from our son and our parents that will keep us smiling

So, today, I might just take a few minutes and list the things going on in my life that are positive, fun, and bring laughter. I’m thinking I’ll keep adding to that list and look at it from time to time when I’m feeling low, disappointed, sad, or really frustrated. I know I need to make it a purpose to concentrate on that which is positive.

How about you?  What will your list look like?

A young couple has come into our life whose son is special needs. They are trying to cope with the initial news of his disabilities, the on-going therapies, and so much more. They mentioned to us that they have times of great frustration. They wondered if that ever happens to us.

Time for transparency!

Yes, even after 30 years, there are great times of exhaustion and frustration in parenting or caring for one with special needs. My mom, who was my dad’s primary caregiver as he battled with Alzheimer’s, had moments of frustration, too. Sadly, here is what happened to me the other day:

I had been listening all day….and was so tired of hearing Joey’s loud screaming and vocal noises as he played some of his PlayStation sports games. I thought I could just scream - wait a minute – I did! As I was cleaning up the dinner dishes, I totally imitated him and caught him by surprise, frightening him just like he had done all day long to me. Yes, I lowered myself to that behavior. Even Joe was taken by surprise. I’d never done that before, so both the guys were surprised. The good thing is Joey stopped making those noises. I’m not sure if it was because of what I did, but I did it out of total frustration.

It was almost time for Joey to go to bed, which was probably a good thing. Joe made sure he was the one to help him get ready for bed THAT night!

Those times are not nearly as often and not nearly as challenging as what we went through in the early years, and perhaps nothing like you’re dealing with in your life right now. In those early stages there is so much to learn, experience, figure out, deal with, and it’s all dumped on the “plate” of life in a huge portion! The frustration we all experience is often the consequence of all that accumulates emotionally throughout the day and week…..

So, it IS normal to get frustrated. It is normal to come to the end of your rope. The key issue is that we should never be abusive. When we get to a point of frustration, it’s good for our spouse or another person in our life, to “take over” like Joe did when he got Joey ready for bed. We have learned the “dance” that works for us. We pray those who are reading this will find the “dance” that works for them so that their loved one remains well cared for!

Adjustments to any challenge are difficult, especially when it is both physically and emotionally draining. An initial diagnosis that is life-changing puts the attention on the problems and issues of the person needing care, and often the caregiver’s needs are over­looked or at best put aside temporarily. Unfortunately, we don’t always know whether this care we give is for a season or a lifetime. By the time we figure out that God has presented us with a challenge that will last a lifetime, the care­giver is already well into a routine that others think is going pretty smoothly. I say “going smoothly” because a caregiver eventually develops a routine – one that is usually very exhausting, but works. Others think it’s easy, because the caregiver is “just doing what needs to be done” and doesn’t have time to ponder how tired or even frustrated they are. A Walgreen’s ad put it best: “If only caregivers had caregivers.” Yes, the caregiv­ers—supportive, sensitive, caring, available, loving, and tired.

Because care-giving can be and often is a full-time job, we need to understand that although great satisfaction can come from caring for a loved one, some very negative outcomes can put the caregiver at great risk as well. Like the tension on a piece of elastic, we can handle a lot of tension and frustration for a long time; but at some point something has to give.

Stress involves feeling responsible for what we cannot control or putting pres­sure or strain on something. Stress can be good, for example, when preparing to go to college or planning a wonderful wedding, activities that make us feel alive and excited; stress can also be bad as when dealing with difficult in-laws, money problems, divorce, or trying to accomplish too much in a day. Some­times we get rolling, and we don’t know when whatever we are doing becomes too much or when the good stress turns bad, much like driving the highway without realizing we’ve gone from 60 to 80 mph when all of a sudden we see the police car on the side of the road! We may have been cruising for a while at 80 mph, but we suddenly realize we’d better slow down. Just as we grew ac­customed to driving the highway at a high speed, we adjust to cruising life at unsafe speeds and become comfortable there. What we are doing works for us and might even feel comfortable, but at some point we will run out of gas! We know what to do but often believe we can’t slow down or simply fail to see the need until something stops us.

What might stop us is, for example, a marital relationship falling apart at the seams or our kids showing signs of rebellion because we aren’t taking care of the relationships properly. What has stopped me from time to time is my back “going out” or the time I lost huge clumps of hair, leaving a bald spot the size of a tennis ball on the side of my head. In our minds we may think we’ve got it under control, but our bodies may start falling apart, unable to take the pressure we’re putting on them—emotionally or physically.

Many drive the road to weary without even knowing we were headed there. Stressors like protecting the person we care for, the many choices we must make, life-threatening procedures or surgeries, financial burdens, guilt, dealing with the perceptions others have of our situation, disagreements on treatments, sibling resentment or extended-family squabbles, and finding competent medi­cal doctors, therapists, and teachers all add up to pressure. Sometimes we put the stress on ourselves, and sometimes others try to put it on us.

Of the 60 or so ideas shared in  UNEXPECTED JOURNEY – When Special Needs Change Our Course , here are a few ways for caregivers to begin to care for themselves:

·Establishing boundaries with people

·Bud­get “buffer” time into the day – allowing time for unexpected delays, planned pressure, emergencies and “life”

·Listen to slow, soothing music rather than fast or loud music

·Pray

·Get exercise

·Laugh! Laugh hard!

·Cry! Cry hard!

·Enjoy a movie – even if it has to be one you rent when you can’t get out

·Play a game

·Say yes to help

·Seek support from support groups or others in a similar situation

Allow others to help, but don’t wait for others to see that you have a need. When you sense you need a break, find ways in your situation that will allow for it – be creative, look for ways to get refreshed, because if we don’t take good care of ourselves, we can’t take good care of our loved one who needs us!