Sometimes it’s easy to dwell on the difficult things we face as parents of children with disabilities. As David’s special needs have increased over the years, especially as his Dystonia has developed, life has become more complicated. And although it’s easy to focus on the negative, by God’s grace, I try to choose to focus on the positive things daily. Here are some of the things I’m thankful about on a regular basis. Hopefully it will spark your own daily thankfulness list:

• A kind caregiver with very similar values
• An easy-going disposition from David
• The freedom to have choices to work from home
• That my husband still has his job in the newspaper world when so many others around him are losing theirs
• That David has had excellent health. So many people with special needs have fragile health.
• That David has developed his own ways of communicating his needs and wants.
• For a good sense of humor.
• For the knowledge and experience that God loves us and is lovingly sovereign.
• That we have the freedom to have David home with us and take care of him ourselves (with the help of our part time caregiver too)
• When I can’t think of anything to be thankful for, the one thing I can say is that, “Well, it could be worse!”

That’s my short list for today.  I find it helpful to start each day by saying outloud a few things like this that I’m thankful for. It sets the tone for the day.

“Oh give thanks to the LORD, for He is good, For His lovingkindness is everlasting. “  Psalm 107:1

I am linking up with Ann at A Holy Experience today, where we are sharing our gifts to 1000 (and beyond).  Will you join me there?  Or leave a comment below and tell me how you are thankful today?

Have a blessed day!

Dayna

aka. hopebuilder

When a suffering and contorted child or adult finds dramatic help from their Dystonia it is a chance to stand and shout it from the rooftop!

That is why it is with great pleasure and rejoicing that I share this story of DBS and Dystonia with you.  It is a story of a seemingly perfectly normal child whose life is turned upside-down when he begins to show signs of Dystonia at age 11. What is Dystonia? Dystonia is a neurological disorder which causes muscles to contract involuntarily, forcing affected body parts into awkward and often painful positions.

Sometimes Dystonia is caused by a genetic flaw in the genetic code. This was the case for Michael Sharp.  By the time his Dystonia was diagnosed and Deep Brain Stimulation was recommended, his whole body was affected with painful contortions and he was on several strong pain medications that left him unable to concentrate or even remember basic things like his friends’ names.  Discoveries Magazine has written a wonderful and inspiring story about his life and the miraculous affect of DBS.

Michael’s Story

Here, you can go directly to his video. Truly a miracle!

DBS isn’t the cure-all for everyone with Dystonia. So far, it hasn’t helped our son, David. But we still have hope and they are discovering new things about Dystonia and DBS all the time. In the meantime we continue to look to the Lord to open doors of help and relief for him and to give us the grace and perseverance for each day.

Many blessings to you!

Dayna

aka.hopebuilder

I love finding Thanksgiving Poems! I found this one in my email inbox! It would certainly rank under true inspiring poems. I hope it blesses you and causes you to meditate on all that you have to be thankful but especially on the One in whom to give thanks!

A Thanksgiving Poem

Let us give thanks to God above,

Thanks for expressions of His love,

Seen in the book of nature, grand

Taught by His love on every hand.

Let us be thankful in our hearts,

Thankful for all the truth imparts,

For the religion of our Lord,

All that is taught us in His word.

Let us be thankful for a land,

That will for such religion stand’

One that protects it by the law,

One that before it stand in awe.

Thankful for all things let us be,

Though there be woes and misery;

Lessons they bring us for our good-

Later ’twill all be understood.

Thankful for peace o’er land and sea,

Thankful for signs of liberty,

Thankful for homes, for life and health,

Pleasure and plenty, fame and wealth.

Thankful for friends and loved ones, too

Thankful for all things, good and true,

Thankful for harvest in the fall,

Thankful to Him who gave it all.

~by Lizelia Augusta Jenkins Moorer ~

Dayna

aka.hopebuilder

]]> http://gracetodayblog.com/a-thanksgiving-poem/feed/ 4 http://gracetodayblog.com/11-tips-to-handle-or-survive-a-holiday-with-your-special-needs-child/ http://gracetodayblog.com/11-tips-to-handle-or-survive-a-holiday-with-your-special-needs-child/#comments Tue, 22 Nov 2011 18:21:02 +0000 hopebuilder http://gracetodayblog.com/?p=473

Do you break out into a sweat just thinking about the upcoming Holidays with your special needs child? Do you cringe at the thought of awkward moments you are sure to have? How will others react or respond? Will we be able to have an enjoyable and meaningful time? These are some of the thoughts I have and you may have them too. Handling A Holiday with a child with special needs has it’s own unique challenges. Here are 10 tips that I hope will help to ease the stress and make your family holiday less stressful and much more enjoyable for all.

1. Plan Ahead! When it comes to having a special needs child there are extra considerations to take into account. It’s absolutely necessary for you to plan ahead whether you are going to Aunt Jean’s for Thanksgiving dinner or having the family over. Not only will you have the usual things to prepare for like the food you will take and making sure the other family members have what they need, but you need to take extra time to plan for your special child and his needs. What to take? Who will be there? When to come home? For us, since David is in a wheelchair now, we have to consider how we will get him up any stairs. Will the bathroom be accessible?

2. Agree about time to leave. Be sure to discuss with your spouse ahead of time when you will leave.  If you agree on a specific time, be sure to agree to be flexible too. If you’re sensing that stress is escalating with your child you may want to cut out before things get harry. On the other hand, if things are going smoothly and he is enjoying his cousins, you may want to extend the time. Just be sensitive. Maybe you and your spouse could have a sign you give each other.

3. The Backpack (or survival kit). For families with a special needs child, this could almost go without saying, but you need to always have a backpack or survival kit. For David, we pack his drink bottle that has an attached straw, his hand-held game WITH the charger, his Alpha Smart typing gadget so he can communicate if you wants to, and a change of cloths for emergencies. (once we had to bring him home in his cousin’s pants and underwear. His cousin is about 5 sizes bigger!)

4.  Agree on a time to leave. Hopefully by now you’ve worked out a plan with your spouse where you share the responsibilities of taking care of or watching your special needs child. But in case you haven’t, discussing this issue ahead of time can really help ease the stress during a holiday get together.  Does your child need help eating or going to the bathroom?  Who will take care of these needs?

5.  Don’t sweat the mealtime! If you are a parent that tries to teach your children to eat everything on their plate, you might considering loosening the grip for the holiday meal. A holiday meal is NOT the time to make your child eat everything on his plate with a cheerful attitude. If he is a picky eater, you might even consider bringing his favorite dish and being ok with the idea that that may be the only thing he eats.  This is a time for enjoying each other, not stressing over getting your child to eat. You want to get through the meal with the least amount of drama.

6.  Bring a Caregiver. I know this may seem like a far-fetched idea and it certainly doesn’t fit into everyone situation but several months ago we started receiving several hours a week of help. When the 4th of July rolled around my husband had to work. So I brought our new caregiver with us to my sister-in-laws house. It was the first time in a long time I could eat with the other adults and actual enjoy the conversation during the meal.

7.  Decrease overstimulation. Does your special needs child have sensory issues? Does he get overstimulated easily? You especially need to plan ahead for this if so. Will there be a quiet room or corner he can go to? Consider bring his ipod, a calming dvd and player, his special toy that calms him, or something familiar to him.

8.  Smile and say “Thank You”. We all have well-meaning friends and relatives who have the answer or advise whether or not it’s asked for. Some may even be insensitive. Now is not the time to debate. Be like a duck and let insensitive comments role off your back. Smile at your “advisers” and thank them. You don’t have to agree and you don’t have to do what they say. But you can have grace and gratitude.

9.  If at all possible, invite friends and family to your home. Usually it’s easier on us, the family with a special needs child, to have guests in our house rather go to theirs. Maybe you can do the inviting early before another family member does.

10.  Extended Stay. This should be a post in itself but I just wanted to touch on it. In some cases, if you are staying out of town for more than a day, consider getting a hotel.  Having a hotel room gives you a chance to get away with your child for some down time. Plus, if your child is handicapped and in a wheelchair, having a handicapped bathroom is such a help!

11.  Count your blessings! I find that if I count my blessings it makes the day more enjoyable, it causes me to be more patient and to appreciate those I am with.

I hope you find these tips helpful as you prepare for the holidays! May you be blessed beyond measure! Please feel free to share Your tips with us or add a comment! You are most welcome!

Dayna

aka.hopebuilder

No matter what challenges we may face as parents of special needs children or with a personal disability, there is only one sure way to come through with victory and hope. In Christ Alone, My Hope Is Found, performed by Adam Young of Owl City is an inspiring music video that will lift you up and help to get your focus back to the sure foundation. Watch, listen, reflect and be inspired!

The Law of Attraction and the attitude of gratitude go hand in hand.  Gratitude is powerful! This video is an inspiring reminder of  why we need to start each day with gratitude.  What we give out is what will come back to us. Watch, enjoy, and be inspired!

“A happy heart is good medicine and a cheerful mind works healing, but a broken spirit dries up the bones.” – Proverbs 17:22 (Amplified Bible)

Being confined to a wheelchair because of Dystonia and struggling to use his hands in the midst of contorted and twisted movements makes for a limited repertoire of enjoyable activities for David.  But that doesn’t seem to hinder his good-natured, joking and sly disposition!  One of his favorite pastimes is watching good ole’ Laurel and Hardy movies. In fact, he has a bunch of them.  Sometimes, when it seems that everything David tries to do only makes his jerking and tenseness worse, the best calming solution is a funny movie. That’s when we pull out Laurel and Hardy!

Road Trip!

On our recent trip to South Carolina to see granddad, David got to experience an ultimate high. Through a little research of fun activities that David could enjoy, we found that the Laurel and Hardy Museum we just a short jaunt from granddad’s town!  Oh the squeals and grins! You would have thought we were at Disney World. Although the museum is a tiny 2 room building, it had a ton of memorabilia!  With the many photo ops, miniature store, and movie viewing, we got a very satisfying fill of Laurel and Hardy.

Traveling with a handicapped person in a wheelchair  is challenging. But doing a little research ahead of time can ease the stress and make for a much more enjoyable trip for everyone. If the activities can be seasoned with laughter, that’s even better!

As you can see, David had a great time with his good buddies, Laurel and Hardy and Granddad!

If you have a story you would like to share that would bring a smile or give an anecdote that relates to special needs, disabilities or wheelchair travel please email me at hopebuilder01@gmail.com.

For more tips on easing the stress while caring for a handicapped loved one please get my “17 Sanity Secrets”.

May your life be filled with grace and laughter!

Dayna

aka.hopebuilder

“Houston, we have a problem!”

Sometimes our situation is such that it’s near impossible to get out and minister to others. Do you know what I mean? Maybe, like me, you are a parent of a special needs child and their needs are too great for you to commit to any type of ministry that would take you away from them for an extended period of time. Or maybe you are caring for a disabled spouse or ailing parent. Or maybe you yourself are homebound to a certain degree with a disability or handicap and find it hard to get out and minister to others.

Whatever your personal situation, I would like to recommend a wonderful ministry that almost anyone can do and that I’ve had the pleasure of doing for 3 years. It’s called The Card Ministry!

Here’s the thing. Sending someone a greeting card can be done anywhere, anytime, to anyone no matter where in the world they are. You could even do it in the middle of the night!

Who is hurting and needs a word of encouragement? Who is recovering from surgery? You can send them a humorous card to brighten their day! Who just lost of loved one? A heartfelt sympathy card can mean more to them than you could ever know. Who has ministered to you in some way? Send them a card of thanks from your heart. Who just simply comes to your mind? That’s a prompting! Send them a card! You never know. That person may get your card at the exact time that they really needed it.

E – Cards vs. Real Cards

Am I talking about an e-card? No. E-cards have their place. I’m talking about a REAL, paper card. Here are just a few reasons why you need to send a real card over an e-card:

1. Real cards with a heartfelt message, and especially a personal picture, are kept and treasured.
2. Real cards can be shown to others anywhere without having to use a computer.
3. Sadly, E-cards are many times never even seen! Statistics show that 80% of emails are never even opened!
4. Real cards are more memorable since they are tangible.

Many cards I’ve sent and the reactions to them stand out in my mind.

I sent a card to a childhood neighbor whom I recently reconnected with. In the card I scanned a picture of my 12 year old birthday party I’d found and put it in the card. When she got it she called me. She said she had been having a bad day. When she got home and saw the card it made her day!

A young friend of ours with Dystonia and Cerebral Palsy has spent the last several months in the hospital. I’ve sent him several cards to brighten his day and make him laugh. His mother tells me how much he enjoys them and puts them in prominent places for others to see.

These examples are’t meant to pat myself on the back but to share with you how meaningful a real card sent from the heart can be.

Unexpected results!

Not only does a card ministry   bless the receiver but it has some amazing and unexpected results for the giver! I’ve known of several people who suffered from depression. When they started regularly sending out cards to others it has  completely lifted their depression!  Card sending helps to get us out of our inward in introspective thinking and put our thoughts on someone else. As a result, we, the sender are truly blessed!

Go ahead! Anyone can do it. Make someone’s day. Send them a card. Start a new habit. Start of Card Ministry!

I’d love to hear your card stories! Won’t you share?

Dayna

aka.hopebuilder

Whether you are handicapped or not I think you will find this video so inspiring. So many times we complain about our circumstances or think we were dealt a bad hand. But take a look at how Patrick Henry Hughes’s perspective. I think we can all learn from him to focus on our Abilities rather than our Disabilities. After watching, you can check out his book,I Am Potential: Eight Lessons on Living, Loving, and Reaching Your Dreams
.You may also remember him from his inspiring story on Extreme Makeover Home Edition.

This is a story of giving back. Also called, “A special place in my heart.”

Do you have a particular place that means so much to you that you just want to be there all the time? Maybe it gives you a warm fuzzy felling? Maybe it’s a group that meant so much to you because of how it helped you, your child, or some else you love .

One such place for me is The Bodine School in Germantown, TN. Two of our kids have Dyslexia. For them, that doesn’t mean they make their letters backwards or flip words around. It means they have some form of learning disability. The Bodine School helps children who have a pretty severe form of learning disability or Dyslexia. They take kids who think they will always “be dumb”, and give them hope that they really can succeed and become something!

What they did for our kids was just short of a miracle. Instead of thinking they will always be dumb, they were taught how to compensate for their learning weaknesses and learn through their strengths. Their creativity was prodded and allowed to bloom and develop. Their self-confidence and self-esteem soared where it was once down-trodden.

When I think of The Bodine School I get such a warm feeling. My son and daughter aren’t there anymore. They are now 19 and 23. At times I’ve been sad thinking about how the school isn’t a part of our lives anymore.

One of my dreams and goals in life is that one day, when my ship comes in, I will play a major role in bringing back the High School grades at The Bodine School.. My son, in particular, would have really benefited from it.

A few weeks ago I heard a motivating message about having big dreams. The speaker talked about starting NOW. Don’t wait for your ship to come in. Start now no matter how small. So that’s what I did. I called the school to find out who was in charge of volunteering. They needed my help that week to serve lunches. In a few weeks they will have their annual BBQ dinner. In the Spring is the biggest fundraiser, the silent auction.

Giving back or paying it forward. Whatever you want to call it. What a blessing to be able to start now to serve the school that meant so much to our family!

What about you? Is there a place, a group, or an organization that has touched your life in a very personal way? How can you give back? You don’t have to wait.

You know, often times when we are in a difficult situation it’s easy to grow inward and depressed. But finding a way to serve others and give back will not only help to pull you out of your own self-absorbed circumstance, but it will bless others at the same time.

Dayna

aka.hopebuilder