Thursday, December 30, 2010
While it's traditional to begin the New Year with resolve and anticipation of a fresh start, I've determined to stick my head in the sand. After a completely overwhelming past four months, I've committed to giving myself a break.
I am already weary. Ten years of parenting a boy with a severe bleeding disorder, five of which have included post-traumatic stress disorder and related anxiety are enough to do me in alone. But I also have wrestled with raising a very energetic little girl with a smorgasbord of what I commonly call "alphabet soup" for the past eight years as well.
The past four months have been a time where we have really been put to the test. After sending our son to hemophilia camp with his older sister this summer, we thought he had finally conquered some of his giants. Not only was he gaining some self-assurance with being away from home for a week, but he also gained calm and confidence learning to infuse in every aspect except for putting the needle in his own vein. I had the delight of seeing my old boy back again -- the one who was joyful and not owned by traumatized emotions. However, less than a month later, as sometimes will happen, we blew a vein while infusing. Unfortunately, it was all downhill from there. Since September, we've been dealing with a renewed round of psychotherapy and psychiatrist appointments with new medications. Despite sedation, infusions have become so terrible that we have ended up in the local emergency room, unable to subdue him for the infusion between the two of us. We're making the slow climb out, but we measure progress in centimeters rather than in strides.
Meanwhile, an alternative therapy in August for our multi-allergic youngest daughter resulted in her behaviors becoming more pronounced. We made the attempt with this therapy because in addition to being allergic to every antibiotic class but one, she has also reacted to the three ADHD medications we've attempted to use. Prior to the August therapy, I had seen many signs of sensory issues in my youngest, but figuring it was the least of my problems, I made some minor adjustments at home and ignored the rest. (Are you seeing a pattern of avoidance here?)
However, once school began in September, it became obvious that things were taking a sharp turn for the worst. Ostracized and teased by her classmates, our daughter's quality of life was quickly deteriorating. She became the one who was annoying to other children and wasn't invited to parties. Her sensitivities increased as I became unable to even touch a hairbrush to her head. I knew from my work with our families that I needed to get moving on diagnosis and treatment for our girl. In other words, the sensory issues got shuffled to the top of the pile.
With the help of an excellent school district and terrific connections around the country, our daughter had multiple, multiple tests with the speech therapist, school psychologist and occupational therapist. Additionally, she went through testing with a neuropsychologist who coordinated everything with the school. The final conclusion? We discovered that our child's ADHD is vastly complicated by her inability to take any medications for her high level of impulsivity. While she can focus and attend to things, her exuberance overrides her ability to reason. Furthermore, the occupational therapist resoundingly confirmed her diagnosis of sensory processing disorder. You know it's not good news when a specialist says, "Most children don't fall so conclusively in the 'definitely unlike peers' area, but your daughter did in every area but one".
So I have some work to do. I have wonderful books to read and websites to explore. There will be more pouring of myself into these children and their emergent needs. New habits will have to be formed on my part. And creative problem-solving will have to become my "new normal".
But not now. Not when it was everything just to get this family to the holidays. Every inch of me was required to keep the kids relatively calm and happy as they encountered all that rocks their world in December. It was all I could do to not start crying every time my son wept over his life with hemophilia. I had to muster all that was positive to usher my own worn-down children into the sunnier side of life that they were blessed with during the Christmas season.
Don't ask me to be a grown-up now! Stop pushing me to become the resident expert on yet another diagnosis. Let me read novels rather than all of the information that will equip me to take my kids through this next phase. I'm plugging my ears to what I hear going on! I want a blissful, ignorant bubble bath where reality doesn't bite so hard!
I'd better get this avoidance over with quickly. The IEP meeting to put interventions in place is in five days!
Wednesday, December 22, 2010
|Copyright Sebastian Gauert via 123rf.com|
"Better a dry crust eaten in peace than a house filled with feasting—and conflict."
(Proverbs 17:1, NLT)
"Peace will not come to our world unless it first comes to our hearts." ~ Stan Toler in ADVENT MOMENTS: Preparing your Heart for the Coming King
It saddens my spirit and makes it heavy, contemplating the notion that God surely wouldn't want us to celebrate the earthly arrival of His only son in such a fashion. Humility, self-sacrifice and relentless love were the hallmarks of Jesus life, so how does this insane para-holiday behavior reflect such characteristics? And how do we get through this ugliness when we have little control over others?
The answer lays in part in the December 12, 2010 post on joy. First and foremost, boundaries have to be set. What's your tipping point for putting up with the bad behavior of others? Set clear lines on what you will and will not tolerate as far as comments or actions with your spouse or immediate family well before you get together with them. Be willing to be firm but gentle in enforcing those parameters with people during your gatherings. If it's important for you to spend Christmas morning or Christmas Eve with just your immediate family, then state such and don't yield to any pressures to do otherwise. In fact, it may be calmer to plan with your spouse or kids how you intend to spend the holidays in October or early November.
Second, realize that Christmas is NOT about you! There are many people other than yourself involved in the celebration. It doesn't always have to be your way. Resign yourself to a gathering that is going to be nothing like what you'd like it to be, but put a time limit on it. Once you've made your appearance and graciously acquiesced to another person's wishes, carve out what you'd like to have as your own special time. It always cracks me up to see how we get fixated on needing to have certain things done on certain days. There's definitely more than one day to celebrate! And did you realize that more than likely, Jesus wasn't even born around Christmas Day anyway?
Third, learn not to engage when tempers flare. The Book of Proverbs has at least 7 entries describing the foolishness of a hot-tempered person and the wisdom an even-tempered person. If another person tries to draw you into a tussle, explain, "You know, I think it would be better for all of us if we talked about this after the holidays." When you find another getting under your skin with offensive remarks or actions, let it slide off of you and just shake your head. Don't let the emotions control you or undermine your observation of the Savior's birth!
Finally, accept the fact that you're not always the easiest to live with either. Each person has their own foibles and shortcomings. If they didn't, Jesus would have had no need to launch His rescue mission to save humanity. I often joke with my husband, "We're lucky we have each other because no one would put up with either of us!" Viewing ourselves in a more humorous, self-deprecating way makes it a bit more manageable to "Love one another as I have loved you." (John 13:34)
As Christmas comes to a crescendo, it is more important than ever that we fix our eyes and our temperaments on what really matters lest we miss the whole purpose of the celebration. Learning to cope with the inevitable conflict in gracious ways that imitate the Babe in a manger may be the best gift we could give all year!
PRAY: Jesus, help me to give others the grace You gave me when You came down to earth as a babe on Christmas. Help me to put out the fires of any conflict that may arise during the holidays by doing my part, staying calm and acting wisely.
~ Barb Dittrich
Sunday, December 19, 2010
Here we are at the final week of Advent. And if you're anything like the typical person, you're feeling your stress rising as you see Christmas closing in. There may still be presents to be purchased and wrapped, baking to be done, cards to be sent or programs to attend.
Interestingly, the focus of this week is love. How appropriate that this theme draws all the other previous three together. It is in meditating on the enormous love of God that we find hope, peace and joy. And what a love it is!
I think that no other group of individuals can come close to relating to the Father's love for us quite like parents of children with special needs. Our job is so often a thankless one. We hear our children cry out for
help just as Jesus did from the cross, and in a much more heart-piercing way than in the average family. We parent someone who society so often rejects, just like they did God's only Son. We not only parent a child, but are often a nurse or technician, going through strict procedures or routines that others could never fathom having to do. That can even venture into the arena of the disgusting, like having to deal with the toileting issues of older children or other wonderful bodily functions. And then there can be the behaviors that stand in great defiance of our love. I know that I have been hit, spit upon and told by my child that they hated me, and yet I still love. We go through these things which are a strong reflection of God's love for us.
And yet, He loves us even more. I so often tell parents who are worried about their children to remember that God tells us that He's numbered every hair on their heads. (Luke 12:7) Even we as concerned parents haven't done that! God also tells us that He keeps track of our every tear. (Psalm 56:8) I don't know about you, but there are times when I have to tune the crying out!
God's love for us and for our children is beyond our fathoming! Even the most loving person I know would never have their child take the punishment for some ungrateful law-breaker. And I think Paul sums it up perfectly in Romans 8:32, "He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things?" (NIV) This love is so lavish, so abundant, so extravagant that we are truly missing out on something if we don't take the time to bask in it this time of year.
If you are parenting a child with special needs, you have many demands and stressors on your live. Make time, even if it's only 15 minutes before or after the kids are in bed to relish the love your Father has for you! Sit in the quiet glow of your home and think on what you've read here. Nestle in to the comfort of knowing that nothing here on earth could touch the immense love of your Creator. He's with you in every step you take and will see you through to a glorious finish!
I leave you with a tiny Christmas gift -- A link to help prime the pump of meditating on God's love:
What Wondrous Love is This
Lyrics by Alexander Means, Music by William Walker
What wondrous love is this, O my soul, O my soul!
What wondrous love is this, O my soul!
What wondrous love is this that caused the Lord of bliss
To bear the dreadful curse for my soul, for my soul,
To bear the dreadful curse for my soul.
When I was sinking down, sinking down, sinking down,
When I was sinking down, sinking down,
When I was sinking down beneath God’s righteous frown,
Christ laid aside His crown for my soul, for my soul,
Christ laid aside His crown for my soul.
To God and to the Lamb, I will sing, I will sing;
To God and to the Lamb, I will sing.
To God and to the Lamb Who is the great “I Am”;
While millions join the theme, I will sing, I will sing;
While millions join the theme, I will sing.
And when from death I’m free, I’ll sing on, I’ll sing on;
And when from death I’m free, I’ll sing on.
And when from death I’m free, I’ll sing and joyful be;
And through eternity, I’ll sing on, I’ll sing on;
And through eternity, I’ll sing on.
Sunday, December 12, 2010
I find that studying the biblical meaning of the word "joy" is really useful at a time like this. What's expected of us or promised to us when Jesus talks about this joy in His final hours on earth? Does He promise us that everything will be peachy keen all the time? Does He expect us to have a smile on our face continually? Vine's Expository Dictionary of Old and New Testament Words offers some interesting insights into the word "joy". One note Vine makes that is rather worth our attention is this, "Joy is associated with life... Experiences of sorrow prepare for, and enlarge, the capacity for joy, e.g., John 16:20..." He goes on to say in his description of it as a verb that, "It is contrasted with weeping and sorrow, e.g., in John 16:20,22..."
In The New Strong's Complete Dictionary of Bible Words a more accurate definition of "joy" is given. Originally the word "chara" in Greek, joy is described as a "calm delight; gladness". To me that sounds awfully similar to the word "content" or "assured" in our modern-day language.
With these descriptions in our tool chest, let me comment on today's Scripture passage in the context of Advent. My first thought is that as parents of kids with special needs, we may bear a disproportionate amount of sorrow. More than a few times in recent weeks I've talked to parents whose children are undergoing surgeries and treatments during this season of preparation. We ourselves have just completed an extensive neuropsych evaluation on our daughter followed by an initial IEP meeting. Stress abounds as school staff, medical personnel and our children are distracted by the anticipation of Christmas. Sadly, what should be a time of joy often becomes a time where we suffer under the burden of our hearts racing to get things done. The kids are whining and thinking of nothing else, while their bodies are filled with a disproportionate amount of garbage food and their nervous systems overly stimulated by sights, sounds and people aplenty! What a toxic combination this can be with juggling medical or psychological needs at the same time!
But here's another thought I have. While Jesus promised His disciples that they would grieve and have pain, He also assured them that they would be left with a joy that no one could snatch away. In other words, if you are walking with the Lord, His Holy Spirit fills you with that chara or calm delight that can only be lost by you surrendering it.
That leaves one to ask, How am I surrendering my joy this holiday season? There are a number of ways we do it. One way is by biting off more than we can chew. There are so many delightful things available to us this time of year. My daughter with ADHD and SPD was invited to both a play and an opportunity to decorate cookies with the elderly this month for her Brownie troop. This was in addition to her regular meeting and gift exchange party. While it sounded like so much fun, I had to process in my mind, What will this look like once the event is finished? Frankly, it would be very difficult for her to sit through any play unless she is right down front to see well. That easily scratched the play off the list. Her behaviors are also very difficult for people of my parents' generation to understand. It can be exhausting just watching or listening to her. So there was another event scratched off the list. Further, on both of those days we were expected to do some other things like pull the junior high float in the local Christmas parade, so the rest of the family would have been cranky from all the running and tight schedules.
How are you keeping yourself from biting off more than you can chew? Are you buying fewer presents or maybe shopping online? Are you only going to bake 3 kinds of cookies this year than the usual 6 or even buy already made cookies this year? Are you putting off some of those doctor's appointments or school meetings until January rather than trying to deal with all of it at this time of high stress?
Another way we give away our joy is by trying to live up to the expectations of others this time of year. Anyone who is a regular reader of this blog knows that I am a HUGE fan of Dr. Henry Cloud and Dr. John Townsend who together wrote the Boundaries series. If you haven't read any of the books, you must! People with children who have special needs must be especially careful of guarding their time and priorities lest they collapse from the weight of all they deal with! This series of books gives the visual image of creating a fence or boundary around your life with a gate. You open the gate to let in the good and close it to keep out the bad. An example of what this may look like in your family is, "Sorry, Mom. We can't come for Christmas dinner because Johnny is on a gluten-free diet and can't be around it. But we'll be happy to come open gifts at a specific time you'd like." Another example might be, "Sorry, cousin Susie. We can't make it to your party because there's too much snow to handle with little Morgan's wheelchair. But we'll be looking forward to your get together around Easter!" Relatives are notorious for wielding guilt at times like this, so rehearse what you will say. Mustering up the strength to do such a thing will feel invigorating versus the anger and exhaustion you feel by giving in to the unreasonable demands of others. And lest you allow the guilt to get the best of you, remember the words of my friend, psychologist, Dr. David L. Smith, PhD, "You can either be like Velcro and let everything stick to you, or you can be like Teflon and let it slide off of you." Make the choice for your sanity and for the sake of the true meaning of Christmas, to be like Teflon when dealing with the expectations of others.
The final way I'd like to discuss the manner in which we surrender our joy is by holding on to our own unreasonable expectations. I'm as guilty of this as anyone else, and it takes some continual work to improve upon. It is hard to let go of that dream of a life where your child has no special needs. We can often carry on throughout the rest of the year with great acceptance, but find that heartache and denial creep in at certain times. Christmas is one of those times where we may be holding on to fantasies of our perfectly dressed children singing like a choir of angels at church. With a daughter who has serious sensory issues, I was never able to get a dress on her until I found a wonderful place with special dress clothing she could tolerate. (We LOVE Soft Clothing!) I've also had the unrealistic expectation of inviting everyone to dinner at a time too close to the time when we're supposed to be doing an IV infusion on our son. Nothing will make a child resist cooperting like the stress eminating from parents in a hurry to get things done on time! You may have the fantasy of still being able to participate at the same level in every event that you're invited to. Perhaps we need to just have the hubby watch the kids while we make a brief appearance somewhere. We may have the expectation of still getting out dozens of Christmas cards before the holiday hits, complete with letter and photos. How important is that to us if we are rushed to get them done and can barely afford the postage?
What can you be letting go of in the way of expectations? What could you adapt to make things a bit easier for your family? Do you love to have the Advent wreath on your kitchen table, but find your impulsive child just can't handle it? Are their precious ornaments that may need to be put away for just a few years? How important is it that your child be dressed like a catalog model if it makes both of you miserable?
Picture this: You and your children, snuggling together, being yourselves, reading stories that help them understand that the God of the Universe took on human form to assure that they will be in a beautiful place some day where they will be free of their disability(s) and free of any shortcomings we all have. Now that's a calm delight none of us can be robbed of! Please be certain you spend the remainder of this season making sure you don't surrender that kind of joy at any cost!
Sunday, December 5, 2010
Here we are already at week two of Advent. And the theme of the second week is peace. To parents, especially those who have children with special needs, the notion of peace at this time of year may seem nothing short of ridiculous. It appears to elude us with the added demands of the season and the frenzy it creates in our children. When we'd love nothing more than to be sipping hot cocoa, listening to carols and watching the new snow fluttering down as we snuggle in front of a roaring fire, we instead find chaos at its worst.
But that little babe who dared to be born in the most humble of circumstances promised us peace unlike any we have ever known. The world seduces us into thinking a healthy child or financial stability will produce that inner calm we so desperately seek. If only the kids would be okay for a while. If only the relatives or friends would be more understanding. If only the school would cooperate with us. Foolishly, we run ourselves ragged, fixated on things like this that will never bring us lasting peace because, well, life happens.
Instead, God guides us to the recipe for that lasting contentment and blessed assurance that all will ultimately be okay. Those instructions can be found in Philippians 4:4-7:
Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (NIV)
Let's pull those verses apart to discover the new habits we can develop to give us that amazing serenity:
- Find your joy in the Lord. While the world offers things that bring temporary delight, God offers you an everlasting awe that can't be obtained anywhere else. If you take some time to think on it, that alone can bring you some happiness in the midst of your storms. Every snowy mountain, every colorful sunrise bears testimony to His beautiful glory. It's a gift to merely bask in that.
- Don't take out your frustrations on others. Your composed behavior will show them that there's something pleasantly different about you -- that you're walking closely with the One who is right at hand to care for you through every challenge you face. Only by clinging to the power of the Holy Spirit can you go easy on others when you're in a tempest yourself!
- Don't tie yourself up in knots with worry. Live like a person who actually believes what they profess to on Sunday! Lift your concerns to God in prayer and thank Him that He even allows you to approach Him with such things! Praise Him that He cares about your every tear! And know that He has your best in mind and will either deliver you from or through your troubles. Rest in the confidence that solid trust in the Maker of the Universe provides.
In the words of St. Augustine, "Our hearts are restless, Lord, until they rest in Thee."