One of my biggest fears as a parent of special needs children is if they will feel included as they reach the secondary setting. Right now they are little. Their peers are starting to notice that there are some differences. One little boy in my son with Down syndrome’s Sunday school class told his mother, “I like playing with him. He listens while I talk!”  I does not seem to bother him that J is nonverbal. Right now it is not that big of a deal.  However, I have noticed that some of J’s peers are starting to move ahead of him developmentally, and so that little worry bug starts buzzing in my ears. That is why I love hearing stories like the following:

Texas high school student with Down syndrome voted Homecoming queen

Student with Down syndrome voted homecoming queen

Senior with Down syndrome voted onto homecoming court

Today has been one of those days, at least to me. The children , unfortunately, have all inherited seasonal allergies from their parents and are half sick, so I decided to keep them home from school. It was a half day anyway. Why in the world would I want to load the miserable crew into the van just to go to school for two or three hours, especially considering that Luke and Joshua’s schools are about 25 minutes apart from one another. No. Not having that today.  Anyway, they were fairly grumpy, whiny, and I swear they have mastered the skill of synchronized pooping.  I mean I’ve heard of women living together syncing their cycles, but this has gotten ridiculous. To top it all off, I ran into the kitchen responding to the sound of Josh’s cries to find that Lucy had put a laundry basket over him and was sitting on top of it. She looked very proud of herself

Needless to say by nap time I was over it.  I put the younger two to bed and got to work on some much needed cleaning. I have neglected the walls of late and finally decided that it was almost embarrassing the amount of dried chocolate milk droplets and evidence of Lucy’s “artwork” that had collected on them over the past few months. I was down on my hands and knees scrubbing when Luke came in and said “Kiss my cheek Mommy!” Of course I can never deny such a sweet request. Then he said “Its been a good day!” What!? I thought. With all the weeping, wailing, and gnashing of teeth? The dirty house and runny noses? Its been a good day? But then I had to think about it. What about the movie we watched with all of them cuddled up on my lap? The good lunch we ate. The music we listened to and the bubbles I blew while the kids danced around me yelling “Pop! Pop! Pop!” From Luke’s perspective it had been a good day. He was surrounded by people he loved (most of the time) and doing things that he enjoyed. I had been focusing so much on the negative parts of the day, I had almost forgotten the good. I guess I should look at life from a five-year-old’s perspective more often.

An angel flew home to heaven last week. I did not know Samantha, but she went through cancer treatments at the same time as my friend Jennifer’s son Hatcher and they had become close. Hatcher was healed by God here on Earth and Samantha was healed by being taken home. Her father wrote something very heartfelt on her caring bridge page and I don’t think he would mind if I shared it.

http://www.caringbridge.org/visit/samanthaarnett/journal/2

It is the post dated Sept. 9, 2010. The part that stood out to me the most was when he said: ” He (God) has blessed us with the time we had with her and it isn’t like he took something from us that was not his to begin with. Yes, we did dedicate Samantha to Him when she was a baby. That is merely symbolic, we are all property of God. We call him Lord and yet forget what that means.”

Amen

Please keep the family of this remarkable little girl in your prayers. She is at peace, healed and whole. It is the rest of us who must deal with the sorrows of this world and wait for the time when we can be called to be with Him in His glory.

It has been a long time since I’ve written. Not because I did not want to, but life got the better of us. This past year has been hard with my grandfather entering into the last months of his life with his battle with cancer, to the news that my older son, Luke, has Pervasive Developmental Disorder or PDD. This was particularly hard to take. PDD is on the Autism spectrum and I all I could think about during the diagnosis process was a conversation I had with a friend the day after Joshua’s birth. Jon is my best friend’s husband and we went to college together. After they transported Joshua to Vanderbilt’s NICU I sent most of my family to be with him as I could not leave the hospital yet. Jon came in after they had left and said “I don’t know what to say.” Which I really appreciated. I looked at him and said “At least its not Autism. I don’t know if I could handle that.” I did not know then how that statement would come back to haunt me.
We’ve had a difficult past few months coming to term with the fact that not only will Luke have to deal with a medical syndrome, but these learning and social issues as well. For the first time I really got angry with God over life and the direction in which it was going . I realize that all of this is happening for a reason, though I may not see what that is right now. The important thing is that Luke is doing well in school and seems to be happy. What more could a mother want. Right now he is being pulled out with the hopes that we can slowly incorporate him into the regular classroom without having to rely on an aide.
Joshua is thriving at his school. I really think he is a shining example of why Down Syndrome should probably be called “Up Syndrome” instead. He is such a happy, loving child who loves the outdoors, reading books, and giving hugs.
I am really going to make an effort to keep up with this blog. I found that writing was such a great therapy outlet for me and I miss it.

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.