Dear Doc

Dear Doc

In this journey with my son Austin, we have worked with many doctors, therapists and other medical professionals. Most of the professionals we have come across have been outstanding. We have had and continue to have many wonderful medical professionals on my son’s team. They have helped and guided us along the way. Most are caring individuals who really took the Hippocratic Oath with sincerity and the desire to help others.

In the midst of all our fabulous medical professionals, we have had a few, so to speak, “bad apples.” I have since learned that you can always get a second opinion and if a doctor is not willing to learn about my child and see him as an individual, I can search and find one that does. I guess I always knew this but putting it into practice can be another matter. Columbia, MO is well known for it’s high quality of local medical institutions but also boasts easy access, to two major US cities, requiring just a two hour drive, who also have great pools of medical professionals. Our central location gives our residents many choices for medical care.

We recently had an unexpected experience with a doctor. We have been spoiled by such outstanding doctors that it came as quite a shock to me. This doctor seemed to not listen about my son and I felt that he put my child into a category. I really felt unheard. I left his office feeling very upset. After some reassurance from some other important professionals in our lives, I have decided to seek another opinion and have an appointment to do so. This choice to obtain another consult gave me back some empowerment and the strength to know that I need to listen to my gut. This experience left me wanting to write a little letter to health professionals and the new ones coming into the field. We can all use reminders now and then.

Dear Doc,

Please see that my child is an individual. We came to see you in search of answers. Listen carefully to what we, the parents, have to say. In listening you may solve or discover the answer or problem. Please don’t assume anything, ask us. We do know him best. The listening can really save a lot of time and enable us to ensure the best possible care for my child. My child is a person who is important. Include my child in the conversation even if he can’t talk.  Be willing to look at new alternatives and try to keep an open mind. Please don’t put my child into some category of individuals – he is unique and has his own abilities and disabilities. Please investigate and listen before making any assumptions. Communication is key.  We have come to see you because we need your expertise but don’t talk down to us or act superior to us. We need to be a team that works together for the good of my child. Mutual respect and concern are at the very heart of a good doctor patient-parent relationship.  Thank you Doctor for all that you do.

Sincerely – A parent who is a tireless advocate for her child.

And parents, TRUST your INSTINCTS. They are a powerful guide.  If you have a bad feeling about something or just know something is wrong and the medical professionals are not listening don’t give up. Listen to your gut and keep going. Go to another doctor or the ER if needed.  Find and search for what your child needs. You are their greatest advocate. You are their voice. Doctors are human and can make mistakes. There is nothing wrong with seeking a second opinion! Because ultimately it is up to us to protect our children. We are the ones in the trenches.

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Dear Doc – Columbia Daily Tribune : Catching The Curve Balls

Dear Doc – Columbia Daily Tribune : Catching The Curve Balls.

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Sleep is Overrated – Not!

Sleep is Overrated – Not!.

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Sleep is Overrated – Not!

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Sleep is overrated … not!

Parents around the world are sleep deprived. Every parent expects little sleep when parenting a newborn, but the real shocker is how much sleep deprivation can continue throughout parenthood.

I have a confession to make: I sleep with my son. It’s a long story that led up to him sleeping in my bed, but I feel safer knowing he is there beside me. If he has a seizure, I am there to comfort and take care of him. If he gets sick or something is wrong, I am there. Brain injury can do strange things to a person’s sleep patterns, and he can wake up in the middle of the night ready to party. Austin’s party is kicking his legs and babbling very loudly — very cute but hard to handle at 3 a.m. I have discovered if I change his position and turn him on his side he often will go back to sleep. This makes his sleeping more effective and I feel better being near him rather than hearing him talk half the night in his own bed down the hall. I have such peace knowing he is right beside me.

I didn’t think I would have been the bed-sharing type of parent, but you never know what life will bring you. We have to be flexible and understand that each family and circumstance has different dynamics and issues.

Abby, my eldest, potty trained at 2 years old, which started her waking at night to go to the bathroom. She had always slept in her own bed (except as a newborn; she slept in a bassinet by my bed) but with her night wakings she wanted to be close. My husband and I were OK with her midnight arrival in our bed. However, once I became pregnant with our second child, I worried what I would do with a newborn and Abby in the night. So, we created a compromise and Abby was allowed to come into our room in the middle of the night and sleep on a pallet of pillows on the floor. As she became older, I told her that she didn’t even need to wake me; she could just come in and lie down. In time, I think she got tired of sleeping on the floor and she started sleeping all night again in her bed. I feel it gave her comfort to know that she was welcome, though, if she needed us.

Our second daughter, Amber, was a better sleeper as a young child and currently wants her own space like all preteens and teenagers. Teenagers can really impact your sleep. They want to stay up late! The struggle now is trying not to let them stay up too late. Nights that school is not in session, our girls tend to be night owls. I typically tend to be a late night bird myself. I have had this problem most of my life and my own mother agrees.

So last night, I stayed up too late on my computer. I climb into bed at about 1 a.m. and a funny smell engulfs me. Oh no. Austin pooped. Poor guy had fallen asleep with a poopy diaper. Parenting fail. So I try to change him without waking him, but of course it doesn’t work. So now he is up and wants to party! Again very cute, but I am oh so tired and have so much to get done in the morning. I kiss on him for a few minutes and tell him how we need to sleep. He is not buying it, so finally I turn him over on his side. At some point, somehow, we both fell asleep until 6:50 a.m., when my daughter Amber comes in to have a before school morning snuggle. I love snuggling with my kids. One of the best moments in life.

I think all parents have plenty of sleep-deprived times, and parents of special-needs children often have even more challenges in getting enough sleep. I am fairly blessed that Austin sleeps pretty well these days. It has been a long journey and struggle to get here though. I have friends whose children with brain injury need constant care at night or medicine very early in the morning, and my heart goes out to them. What are your challenges with sleep?

Well, in my sleep-deprived state, I will keep this short because you might be reading this close to bedtime and we all need a goodnight’s sleep. I am going to try for that. If only I would learn to go to bed earlier, maybe tonight. Sweet dreams.

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Posted in  on Wednesday, January 16, 2013 11:16 am.

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Christmas Curves

Christmas Curves.

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Christmas Curves

Christmas curves

By JENNY WADE

Posted December 12, 2012 at 3:14 p.m.

It’s Christmas time again! Seems like last Christmas was not that long ago. I, like most of you, have been very busy this month with holiday preparations. It’s amazing just how much needs to be done. So in all this seasonal busyness, I neglected to generate ideas to write about this month. I didn’t have any. So I asked my husband and daughters and they all expressed in one way or another that I should write about Christmas. In December that is the main thing on everybody’s mind: Christmas.

One of my favorite parts of being a parent is watching the world through my children’s eyes; seeing their faces light up or happiness in their heart. The joy of Christmas has a whole new meaning with children in your life. When my girls were little, I wanted them to feel and see the magic of Christmas. We would go to church for a Christmas Eve service and then spend time with our extended family, usually at one of their houses. It was such a special time. Excitement and joy were in the air.

Then along came precious Austin, who drastically changed our lives. A child with special needs can impact and/or alter family traditions.

Until last night, when my husband mentioned how having a special needs child has changed some of our family traditions, I hadn’t thought much about it. I guess it has become our life and some of the smaller changes are less noticeable until I sit and think or write about them. Our family has had to change the way we celebrate Christmas. Now, we usually stay home and our extended family comes to us. We are blessed with a fairly big family, and it can get quite hectic in that beautiful crazy way. We have not attended a Christmas Eve service in many years; it is just too much to get everybody ready and out of the house. It is less hectic and more peaceful for us to be at home. However; most of the important aspects of celebrating Christmas are still observed: spending time with family, opening presents, special desserts and food, worshiping the Lord and just being together. My father still reads us his yearly Christmas Story. It is a tradition that has endured since my childhood.

Austin’s first Christmas was just two weeks after he had surgery to put his left bone flap from his skull back in his head. The surgeons who saved his life removed the left bone flap of his skull because they knew his brain would continue to swell after his life-saving brain surgery. They did not want his skull to further suppress his brain. After a severe brain trauma, the brain often continues to swell. So they put the bone in the freezer at the hospital. It was an eerie feeling to know that part of your child’s skull was not in his head, but in a hospital freezer. The surgeons had to reopen the incision on Austin’s head to put the bone back in.

That was probably the hardest Christmas, but yet joyous that our son was still alive and now had the bone back in his head. He finally started to sleep a little better. I guess he felt more put together. That year we started Christmas at our house with our extended families. As Austin has grown, we have kept with this tradition. It is much easier for us to be home with all his equipment and supplies.

Austin needs totally daily care and is in a wheelchair. It is quite a production to take him out and about, and sometimes it can seem overwhelming. Do we have his medicine for when he needs it? Do we have food for him? Purified water? Diapers? A change of clothes? Extra tube-feeding supplies? The tube-feeding pump? His bag? We also have to lift him up in his wheelchair into our van or bring out the heavy duty, hard-to-carry metal ramp to put his wheelchair in the van. It is quite a production. If I have someone to help, it is much more doable. Then once we get somewhere, we have to make sure things are wheelchair accessible. It isn’t until you need it that you notice there are still many places that are hard to maneuver or impossible to go to in a wheelchair. Most homes today are still not constructed to deal with mobility equipment.

The hardest thing for me about the holidays is my son will not be running around, eating Christmas treats and playing with his cousins and toys. He is not able to understand what Christmas is. My family will not experience the joy of watching him open presents. He is simply not able. His sisters will open them for him and he might hold a little wrapping paper, but not for long because he will try to put it in his mouth. Everything he can grab goes straight to his mouth.

I am really not trying to feel sorry for myself about my son at Christmas time; it’s just the reality of our lives. Sometimes it smacks me harder in the face than others. Sometimes writing about it is very therapeutic for me.

I will mostly contend and rejoice in the little things my son can do. He can look at the Christmas lights that we strung along his specialized bed, and he seems to watch some movies on his portable DVD player, even if he only catches a few movements on the screen. He may not understand the movie but I know for sure that he enjoys the sounds. But maybe — just maybe — he knows so much more than he can communicate with us.

I will totally love seeing the excitement in my girls’ eyes. Now that they are a preteen and a teenager, Santa is not important, but presents sure are! It no longer works to tell them they better behave or Santa won’t come. That stopped long ago. They are turning out to be wonderful young ladies though. I have such joy in them.

Life gives us curve balls and twists and turns, and we just have to try and make the best of it and hold our chins up. I intend to enjoy Christmas with my nuclear and extended family. Being together and celebrating the birth of Christ is really what it is all about.

If you have a child with special needs, what traditions or customs have you had to change or alter?

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Special Olympics: Power of Words-Soeren

Special Olympics: Power of Words-Soeren.

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