YOUR PERSONAL JOURNEY

Dear New Parents,

You have just begun this journey with your beautiful new baby who has Down syndrome, you are about to embark on a journey of all new sights and sounds.  You will make lifelong friendships and share your journey with wonderful people you did not anticipate meeting.

One important thing for you to keep in mind is that you have a God-given instinct - intuition knowledge - feeling - or whatever you want to call it about your child.  You will need direction and guidance along this journey, but you will know deep inside which way is best for your child and your family.  

There will be times when professionals will believe you need to go one way but your heart is pointing another.  Look at all the roads leading to your goal, then take the one that seems best to you.  Above all ask God for guidance. 

There will also be many detours on this journey, but as in any detour, there is another route to reach your goal.

Dream BIG for your child.  You may feel like you have no dreams left, but make new dreams.  Your child will dream like all children.  But like all childhood dreams, they will alter and change as they grow.  We cannot all play in the Super Bowl or sing like a deva or find the cure for cancer.  But we all can make a remarkable difference in our world.  Watch and see. 

This little one will be the joy of your life, not only the joy but your finest teacher and your most faithful friend.  
God bless you as you take the first steps of your journey.  
Dianna

'Down' at Our House

About Us

(See "Your Personal Journey" below, if you are a new parent.)
See new story about Dianna's brother, Randy, moving in.
 

    In 1982  I (Dianna) received a call about a 10 day old baby girl.  We had waited for a baby for so long, so when the adoption worker called, like the Biblical Sara, I laughed. "Why?", I asked, "We are not on your waiting list and I know it is 3 years long.  
     The adoption worker said, "She has Down syndrome, and that's all I know."  That should have explained it. Right?  
   She knew that I had a brother with DS and Christy, our foster daughter, had lived with us for 8 years.  But she did not know that I had prayed the following prayer the night before:
     "... and Lord, You know the perfect baby for us. You could drop one in our laps if You wanted to.  So I am giving this desire for a baby to You, and I am not going to go to another doctor, lawyer, or fill out the papers for H&W that are under my bed..." 
   Twelve hours later I received the call from Health & Welfare's adoption worker.  Lots more to the story!
  Two years later, I received a call about Matt, and one year later we took a call about Mike.  All infants.  All loved before we ever laid eyes on them.  
    Did we have fear of the unknown?  Perhaps some. But, not until Matt came along needing heart surgery.  However, I thought, "If God could so miraculously drop these little ones in our laps, then surely He would and could take care of their future."  And He has.

             
 Hello, Randy!
Dianna's 58 Year Old Brother Moves In.

You read it right! February 21 became a new life for the Brown's as well as Randy.  I love my brother and wanted to take care of him, especially  if he was looking at his last days, but I have to admit, I did not look forward to the work.

Back to the beginning:
Randy broke his hip in August of 2010, right after I took him and Matthew on a trip. My dream for Randy was to take him on a tour to Branson, Missouri. But since trips to the john may have been a problem, I took our son Matt along so Randy would have a bathroom buddy.

A NUMBER OF FIRSTS:
 
•First time Randy and I went on a vacation together.
First time in Randy's adult life that he went on a trip with people without disabilities. (except family)
First time Randy rode a river-boat.
First time Randy saw live professional entertainment.
First time for Randy to travel in a large tour bus.

Randy had slowed down a lot and I had figured it was now or never to take him on a really cool trip. Yet, I had no idea how prophetic the truth of that opinion. We took the trip the end of June, a month and a half before he broke his hip. 

After his hip surgery, we watched as Randy declined in health, cognitive and walking ability, talking, and every other area of his life.  I told Gary in December 2011 that I did not believe Randy would see another Christmas.  I even told his care provider to make everything easier for him.  Sress and illness could have been factors in Randy's increased seizure activity.  So when his provider said she could no longer take care of him, I thought we were bringing him home to die. Down syndrome was the least of his problems.  Randy needed 'elder-care' - pullups and all. 

We brought Randy home on Tuesday, February 21, 2012 and by Sunday night he could hardly hold his head up, was unresponsive, and could not walk at all.  I took him to the emergency room and brought him home the same night with antibiotics for pneumonia. 

It was tough! He could hardly help himself at all. The day he smiled at me for the first time since he arrived, was the day we made him walk to the bathroom (about 60 feet) and back.  He started helping himself to scoot back in bed.  Bathrooming proved a challenge for everyone.  I read three books in that first three weeks while sitting in the bathroom waiting for him to 'go'.  Gary noticed that he was extremely tense, so we began to find ways to help him relax on the throne.  I found a book that played church hymns if he pressed certain pictures.  We sang. He went!  Then I used the hair dryer to warm him up which he loved. He went!  I read to him. He went! Gary covered Randy's legs with a bath towel and placed part of it between his knees.  He relaxed.  He went!  The result of all these 'tricks', Randy now relaxes when he sits down and there's rarely a time we have to wait for more than a few minutes for him to go. 

Stimulation for the elderly is as vital as it is for our new babies with Down syndrome.  Randy now lives in a house of 7 people.  Our family is busy, and a little crazy. Matt dancing and singing, Melissa kissing Uncle Randy and helping with daily activities, (At first she fed him when he would not feed himself.  Then she helped him grab his spoon and guided his hand to his mouth.), Mike giving him hugs as he passes, the dog and cat acting crazy, outings to eat, church and seeing old friends, all add up to a lot of stimulation for Randy's brain. 

A home health physical therapist came on a Friday then again on Monday.  "I cannot believe the progress he's made over the weekend," was her response.  Within two weeks time since his smile, he almost was walking on his own.  Balance and depth perception are problems, so we use a gait belt for safety, but he is almost weaned from the wheel chair. We lost him one day after leaving him in the bathroom.  He walked on his own the full length of the house back to the boys bedroom to see what they were up to.  He's alert, curious, happy, repeating a few words, answering yes to many questions, eating and drinking better.  He is light-years from not being able to open his presents at Christmas or blow out his 2 birthday candles in February.

Moral of the story:
Never give up on a person, no matter how old.  Learning continues throughout a lifetime. If there comes a day when "other care" is necessary, make sure the home you choose is stimulating, happy, serves nourishing healthy food and snacks, hydrates adequately and most of all loves big in order to make the sacrifices necessary to keep your loved one wholley healthy.

Literal Laughs
    We have a tradition at the end of our visit to a Chinese Restaraunt to open our fortune cookies one at a time.  We have a good laugh because the fortunes hardly ever fit.  
    Recently, Matt's fortune said, "Idleness is the holiday of 'fools'."  As we were getting up to leave, Gary asked, "Are you all 'full'?" 
    Matt stuck out his belly, held it with two hands and said, "Oh yea! It's a holiday!" 

   Dianna has written a manuscript about the five people in her life who have Down syndrome, all uniquely different in their abilities, personalities, likes and dislikes.  
    This simple equation,
"Vision plus opportunity equals success"
 is the theme that runs throughout the manuscript.
    It takes the reader through a full range of emotions while covering infant stimulation, health issues, preschool, therapies, speech and language, the education maze, home schooling, sexual safety, inclusion, braces, dating, working, and post hi-school education.  
    The reader will laugh over their pranks, tear-up over their personal struggles, get irate over thoughtless remarks and wonder over the encouraging ones.  Hear the spiritual insight that comes from the "mouths of babes." 
    Dianna speaks directly to parents, therapists, educators, and other professionals all with the motive of making life better for all people who have Down syndrome.  
    Watch for it.  "Down at Our House" will teach, inspire, and cause the reader to think about the intrinsic value of every human being no matter their intelligence, appearance, race or economic status.  
    Let Dianna know if you would be interested in reading her book once published. 
Dianna@downatourhouse.com

                                  MIKES STORY

Mike is 14 months younger than Matt.  He grew up loving nature, cats, computers, dinosaurs, predators, super heroes, Disney movies, books, the Discovery Center, camping, swimming, bike riding, teasing, and talking.

Mike and Matt both became ill in 2002 while at our cabin.  They both got up after 3 days, and we chalked it up to a virus.  But after we went home, Mike could no longer do school work and seemed to get worse every day.  

During the next two weeks Mike plummeted down-hill and we frantically took him to see his doctors, Mike lost most of his skills during that two weeks.  Without a diagnosis, we continued to search for answers.  Nothing.  Most doctors wanted to put him on anti-depressants, and though there is a higher risk for depression in our kids, we knew that Mike was ill, not depressed.  

One year of emergency room visits, MRIs, blood tests, specialists, and a half-dozen incorrect diagnosis brought us no closer to an answer.  

After that first year, we put Mike on a gluten-free diet (we believe Celiac kicked in after all the pain and stress he suffered) and took a more wholistic approach to his healing.  He regularly sees a Chiropractor who also helps with allergies and diet.  

He is healthy and happy, but not his old self.  We met two physicians who both thought that during those first weeks when he was ill, he probably had an ongoing encephalitis.  He is left with autistic symptoms and lost interest in most everything. 

This illness had nothing to do with Down syndrome.  Yet most doctors looked for causes related to Down syndrome.  Thus, we heard everything from Alzheimers to Parkinson, and depression to a neurologist who thought he was faking - for 3 years.

My advice, listen to your own gut feelings.  Your child is a person first.   Your child is not his/her diagnosis of Down syndrome.  Yes, there is a higher incidence of thyroid disease, but their thyroid problem may be inherited.  Yes they could have more sinusitis, or ear infections.  But our kids also catch colds like everyone else, and can have measles or mumps or other childhood diseases. 

We believe Mike is still in there as we see the twinkle in his eyes and the smile on his face as he watches his little nephews, or sees a dinosaur book, or is confronted by our cat, Joey. 

Mike's story has been the major detour of my life.  But as with any loss, my grief has turned into acceptance.  My acceptance includes hope for a miracle, but a resolution to move forward daily and enjoy the little things that bless his and our days.

Dianna

Contact us:
Dianna 

Melissa 

Gary

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