by Honey Denson

A few weeks ago, I sat down with my son’s early intervention teacher for a conference. She looked at me at said, “Joshua is the perfect example of how early intervention works”

My heart soared. This is exactly what I needed to hear. Sometimes raising a child with special needs is like trying to navigate in the dark with no help. The future is so uncertain, but with a lot of faith and hope, parents cope with it one day at a time. Each comment in the positive is like a pinpoint of light in that darkness. It brings a glimmer of optimism that your child will be able to live a more “typical” life.

Early Intervention really is the key, but it seems as though it gets very little funding compared to other seemingly unnecessary programs. This year, early intervention in the state of Tennessee is getting an 8 million dollar boost thanks to Uncle Sam’s stimulus, but that seems like small change compared to the $600 million dollar convention center that they are trying to build in Nashville. They are claiming that the revenue from this convention center will give an economic boost to Middle Tennessee, but we should just overlook the fact that it is going to take at least 20 years (if that) just to break even on it.

Imagine taking that money and investing it on children. Premature infants who just 10 years ago would have died for being born too early, are coming home and need a lot of help to catch up for those missed months in the womb. Some children with Down Syndrome have nearly normal IQs thanks to early intervention and are able to function in typical classrooms, graduate high school, and have jobs that contribute to our economy instead of being forced to live in institutions or be dependent on government assistance. There is so much that can be done, but isn’t. Our state does not even have enough funds to hire new Early Intervention teachers. Nashville schools are in trouble. The family support programs are in danger of being cut, and, for some families, that is the only financial assistance that they receive. It costs at least twice as much to raise a child with special needs than a typical child. Insurance does not cover everything and many of us do not qualify for any other assistance due to income. I don’t care how much money you make, not many families can afford $1000 a month formula or 20% of a NICU stay considering that the bed alone costs $5000 a day, or some of the durable medical equipment that insurance won’t cover because it is not “medically necessary to sustain life.” Never mind that it makes life livable for both parent and child.

The point is that money is being wasted. Families need help. Children need a better education. Contact your local representatives to let them know how you feel. I can think of no better investment than in the education of our future generation. It is your money after all.

The previous video if from last year’s Christmas project for Reece’s Rainbow, a nonprofit organization that helps children with Down Syndrome find homes. There will be a new Christmas campaign this year. Keep checking back to see what you can do this year to help.

Adoption is one of those truly beautiful things that a person can do for someone else. My father was adopted and several family friends have adopted children who otherwise would be going to bed every night without a hug, kiss, and an “I love you” if it were not for the love and willingness to adopt on the part of their parents.

While there area thousands of children across the world waiting for a forever family, one population is often ignored. Children who have special needs are living on borrowed time. These children have been abandoned because their parents could not afford to take care of them, or they could not handle the stigma of having a child with special needs. Eventually these children wind up in institutions and die within a few years due to neglect or lack of proper medical care.

Even if you do not feel personally called to adopt a child with special needs, you can help these children find loving homes in which they can thrive by spreading the word or donating time and/or money to help those who do want to adopt. Someone made the comment to me “Well, we can’t save everyone.” Which is true, but if we can make the difference in one child’s life, that is one child who will live knowing that they are loved and wanted. That comment made to me reminds me of the Starfish story where a man was walking on the beach after a storm and the shore was littered with hundreds of star fish that were washed up by the violent ocean. In the distance he saw a child picking up one starfish at a time and throwing them back into the ocean. The man approached the child and told him not to bother and that he could not save them all. It would make no difference. In response, the child picked up another starfish and threw it back into the waves as hard as he could. He turned to the man and told him that he made a difference to that one.

It does not matter what you do to help these children. The important thing is that you do something. If the whole world sits back and thinks that the task is too big. There is nothing that I can do. Then nothing will be done. It is our duty and human beings to help those less fortunate and to make the world a better place. Let’s face it. The world could use a little more love and concern for those most vulnerable to neglect and indifference.

H. Denson

Not long ago, my son Luke started to complain about stomach pain. He would sometimes stop in the middle of play, look at us with his pitiful face and say “my tummy hurt.” We were really at a loss as to what we should do. I had told our GI who wanted to give it some time. One month later, his tummy was still hurting, and I insisted that our GI do something about it. After much discussion, we decided to do a endoscopy and colonoscopy.

These procedures involve running a tube with a camera down the throat and up the rectum to take pictures of the digestive tract. They look for any abnormalities or polyps and take very small biopsies. The child is under anesthesia during the procedure, so they have no idea what is going on, and they have no memory of it.

The day before, we had to put Luke on an all-liquid diet. He could only have clear fluids such as Kool-Aid, apple juice, clear sodas, clear broths, Jello, and all of the Popsicles that he could eat. They told us to make sure that nothing he ate contained red food dye since that could show up as blood during the procedures. When he woke up on prep day, we fed him a huge breakfast of pancakes, eggs, and sausage. He wasn’t scheduled until 9 AM the next day, so we had until 9 that morning to feed him as much as possible before the liquid diet started. Once it did, we offered him something every hour to keep his stomach full of liquid so that he wouldn’t feel so hungry. I also dropped his younger brother and sister off with their grandmother since we did not feel that it was fair for Luke to see the other children eating, and they were too small to understand why they should not eat in front of their brother. We spend a good part of the day in distraction mode to take his mind off the fact that he was only consuming clear liquids. My husband took him to a movie in the theater, we rented a new movie, we played games and did whatever we could to keep him happy and distracted.

The hardest part was giving him the medication to cleanse out his colon. It was recommended that we give him magnesium citrate. We had heard from several people that it was pretty nasty medicine, so I called my doctor and they told us we could give him Miralax which is tasteless, gentler, and usually does the trick. Honestly, we probably started too late because I think Miralax takes longer to work than the other medicines, but we gave him several doses mixed into whatever drink he had requested over the course of 4 hours starting at 4:30 PM the night before the procedures. He drank it with little fuss, probably wondering why we were so insistent that he drink all of his Sprite. The hardest part were giving him the suppositories. It is near impossible to give a four year old who is all ready afraid of medications a suppository. He screamed “No Thank You, No Thank You” the entire time while we held him down and squeezed his little bottom together to keep it in. It worked fairly quickly. We had to do it again at 4 AM the morning of the procedure. We were honestly afraid that he was going to have a heart attack, but it was easier. His being half asleep probably helped.

On the day of the procedure, we arrived at Vanderbilt Children’s Hospital at the bright and early time of 6 AM. I swear some hospital staff are way too happy to be awake at that time of day. We checked in, and were called back. Luke got a special pair of pajamas and a stuffed gorilla to add to his collection of simian creatures (The kid has a thing for monkeys). He played around in a child sized car until it was time to go. When they came to get him, they let him “drive” his car back to the operating room. He didn’t even miss us.

Recovery was hard for Luke. It always is. He took a long time to wake up and when he did you would have thought that we were the meanest creatures on earth for disturbing his rest. He cried and proclaimed that he did not want to go home. I’m really hoping that that was the drugs talking because who would want to stay at the place where all of the “pokies” happen? Eventually he came to his senses. They required him to eat or drink something before we left, and they warned us not to let him climb our stairs by himself or leave him alone for long periods of time since the medications that they had given him could cause him to lose his balance easily. By the time dinner rolled around, we had our little boy back to normal.

The tests came back clear of any physical issues. We are still at a loss as to what is causing the stomach pain, but lately it has been better. We just hope and pray that we never have to put him through that again and that the stomach pain is gone for good.

My Joshua has Down Syndrome, and as a result we have spent many an hour at occupational therapy working on his fine motor skills. Fine motor skills are especially important for tasks like self feeding, self dressing, and writing.

There are many conditions that can cause fine motor delays. One thing that you might notice during therapy is your child’s occupational therapist using a lot of toys. They are using a concept called play therapy. Using play therapy makes it more fun for the child because they are usually doing activities that they enjoy. You can also take some of the play therapies that the therapist is using and incorporate them into your child’s normal play at home. Here are some great toys that can help you to do this.

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I recently saw an article that said that Mothers of Children With Autism Have More Stress. To that I can only say “You think?!” It is no secret that raising a child with a child with special needs comes with added stress.  I would be quick to point out that it is worth every once of it, but that does not make it any easier.

Parents of special needs children sometimes have to deal with therapists, extra doctor’s appointments, more meetings at schools, and, in some cases, stares of people who just don’t understand. I had a friend, who is the mother of a child with Cri Du Chat, tell me that she gets so frustrated at mothers who complain about their children having a low grade fever or on how long it takes them to get one typically developing child ready for the day. She has to tube feed her son, give him his medications, dress him,  make sure that his special inserts for his shoes are put on properly and be out the door before 7 in the morning.  She often laments that those parents don’t realize how easy they have it.

Reading this article and reflecting on some of my other friend’s experiences only reminds me on how important it is that we all take care of ourselves. If we are stressed out and on the edge of jumping into the loony bin, we need to take a step back and do a little something for ourselves for a change even if that little something is shutting yourself in a closet with your favorite snack or locking the bathroom door and taking a long, hot bath.  One particularly stressful morning, I put my kids in our playroom and hid on our stairs with my cup of coffee for five minutes. It helped me to gather my sanity and be  a better mom for the day. I encourage all of you to do the same.

Scientists are discovering  that ADHD might not be the problem when it comes to your child’s hyperactivity and their inability to pay attention. For far too long these children have been lumped into one big misdiagnosed category and have had to live with the label of ADHD throughout their school days.  Fortunately,  more doctors are taking the time to discover the root cause of these behavior issues instead of handing out the ADHD diagnosis along with a narcotic prescription designed to calm them down.

Just today a new article came out on MSN about a little girl who was given the label of ADHD. She had been kicked out of a preschool and put on harsh ADHD medications. Fortunately for this little girl, her pediatrician looked further into her issues and discovered that she  had been misdiagnosed. She was actually suffering from sleep apnea. The symptoms of sleep apnea can closely mimic ADHD.  Now,  this little girl has a new outlook on life.  To read this article in full, please click here.

If your child has been diagnosed with ADHD, please consider taking the time to investigate the matter further. Some chidlren truely have ADHD, but it is believed that over time more and more children will be diagnosed with something else and will finally recieve the help that they need.

It is known that 30 percent of people who have Autism also have Digestive Problems, which is higher than the general population.  As a matter of fact, many parents of children with Autism who have put their children on restrictive diets have noticed an improvement in Autism symptoms. The most famous example being Jenny McCarthy’s son Evan.

Vanderbilt University is studying  gene called MET which deals with both brain cells and the  gastrointestinal system , but as Daniel Campbell, a research assistant professor involved with the study says, “As scientists learn more about the disease  it appears that autism is not a single disease but a spectrum of disorders with common symptoms but different causes.”

To read more about his reaserch click here.

The Fired Up! for Down Syndrome Conference will be held in Brentwood, Tn (a suburb of Nashville) This April 24-25 at the Brentwood United Methodist Church.  Some of the topics that will be covered include:

When a woman becomes pregnant she usually fantasizes about her unborn child. Who will the baby look like? What will the baby do when he/she grows up? With the advancement of medical technology we can now learn a lot about the baby before he or she is born. We can also discover if the baby is going to have special needs. Finding out that the baby is going to be a special needs child can be devastating to some couples. There are several things that you can do to prepare yourself for the birth of your special needs child.

For full article, click here.

On a recent road trip with a friend of mine, I found out that she had mosaic Turner Syndrome. I had been under the impression that women with Turner Syndrome could not have children, but she has two healthy daughters with no sign of TS. I also came across this article that talks about the possibility of having children even if you have a full case of Turner Syndrome. For more read here.