Friday, October 31, 2008

Down syndrome and Government Sponsored Healthcare

This blog is not meant for any other purpose than to promote awareness of Down syndrome. However, as I read this article recently and thought about the possibility of our healthcare system falling into government hands, I realized that I should post this here. This is by no means an lesson on how one should vote. This is however meant to inform all of us of what happens when we entrust the government with such things as healthcare - better known as socialized medicine.

Doctor denied residency due to Down syndrome son. 31/10/2008 4:12:00 PM

The federal government must overturn an immigration department decision to deny Australian residency to a German doctor because his son has Down syndrome, the opposition says.
Bernhard Moeller moved with his family to rural Horsham, in central-western Victoria, two and a half years ago to help fill a doctor shortage.
Dr Moeller has a temporary 457 visa which is valid until 2010, but has been denied permanent residency ....

As we each exercise our priviledge to vote next Tuesday, may we all consider beforehand the direction in which we are agreeing to go. It is easy to get caught up in the drama of it all and gloss over whether or not our convictions are heard. Let your convictions be heard in this election.


Identity Crisis?

Hello fellow bloggers. It is a beautiful day here in Northwest Arkansas and I feel like I have been renewed. I began a new class last evening and welcome the new direction. I love being home with John and working with him. He brightens my day and makes me smile when I am down. But this new class has given me an outlet that I so desperately needed in my life in order to help bring balance to my world. It is so easy for us as parents of children with special needs to give the majority of our focus to our child which it has been easy to find myself doing these last 3 months. The time spent with John is not in regret. Both of us have learned so much and he has progressed a lot. But the mistake that I have made is not creating an outlet for myself away from John. He has consumed me in many ways - I talk about him, I work with him, I read about Ds on the internet, etc.

And this has caused me to step back and reevaluate my identity as a parent of a child with special needs. Am I going to let Johns Ds consume me and take on his problems as my own? When my friends and family see me, do they see me as an individual or as an advocate for Ds? I'm not sure that being an advocate for Ds is my role in life. I am me, Father of 5 beautiful children of which 1 just happens to have Ds and Husband of a beautiful wife. And this is what I need to be for the sake of the other relationships in my life and for my own emotional well-being.

John does take a lot of my time; probably more time than the typical baby this age would take. But there also needs to be times in my day where I am able to step away from the situation and maintain those connections to the typical world.

Thanks for reading. I have enjoyed writing down my thoughts and being challenged by some of you that have been on this road for a while. This particular blog today was inspired by my new friend from Virginia at the Bates Motel. Please go by and visit and tell her hello. I'm sure it would brighten her day.

Thursday, October 30, 2008

Daily Happenings

Last night, John went to bed around 10:00 and slept until 6:00 this morning. He of course woke up starving which is not unusual for him. After eating, he and I made breakfast for the others while they all got ready for their daily trek to school/work. I have him right there in the kitchen with me so he is able to see me and I can talk to him which he really enjoys it when people talk to him. His face lights up and he becomes full of facial expressions.

After our dropping off the other kids at school, he is back down for another siesta. I usually do not like him sleeping this much but after 3 months, he self-regulates more than he used to do and doesn't need me to wake him up. He used to sleep through feeding time and bowel movements which now wake him.

Speaking on my last post of change, I begin a new class tonight after taking a little time off with John. It sure was nice not having to read or write a paper. It also gave me time to focus on John and adjust to his needs. But now I am ready to get back to it and get this behind me - so is my wife. I would like to move into a managerial role of health care or either entrepreneurship so I am finishing a degree in Business Management and should be finished Christmas of 2009 - we'll see.

Thanks again for reading. I have enjoyed getting to know some of you via email and blogging. Have a good day

Wednesday, October 29, 2008

Lessons Learned And Still Learning From a 3-Month Old

Hello fellow bloggers and friends. This week has given us a taste of winter with temperatures falling to the mid 20's overnight. It has made me glad that I spent the time earlier last month cutting and splitting firewood. With the chill in the air and the leaves falling from the trees, it makes me think of the reasons I like Fall: the beautiful colors, hot chocolate, fires in the fireplace and the holidays just to name a few.

The changing of the seasons tend to come around just when my attitude needs it. Just when I feel the monotony of the hot weather of summer setting in, the seasons change and my attitude is renewed. This changing of the season is also translated into my personal life.

As I reflect upon the last 11 months of my life, I see the birth of John as being a 90 degree turn for my immediate as well as extended family. I must add here before I go any further that this change has been one of the most significant positive changes in our lives although the view of this being a positive change has only occurred within the past 3 months. Seeing that this is a positive change also grows within us on a daily basis as we care for John and allow him to slow us down and to teach us that there is more than one way to live and enjoy life.

This change is unlike other changes that occur in our lives. This change is more of a surgical procedure of the heart. It has changed my perspective forever as I am sure it will continue to change more as he grows and we face challenges together. As I look back at the last 3 months with him, I see how much of life I take for granted. For example, with my other 4 children, therapy wasn't needed and they learned on their own at pretty close to the exact time they were supposed to. They sit up on their own, they ate solid food when they were supposed to, walk, ran, jumped, etc.

Now I know that his future is still to be determined but these last three months have revealed more delays than my other children which I am fine with. I know that he will achieve in his own time but it has caused me to slow down and take a deep breath. And it is this slowing down that is bringing about change in my heart and causing me to see life in a different way.

This child that the Lord has blessed our home with came with a message. And the message that I have learned up to this point has been to slow down and rethink what it is that is important in this life: relationships or personal achievement?

Sunday, October 26, 2008

From Head Control To Trunk Control

John is now able to maintain good head control from left to right. He does however still have difficulty with full extension (bringing his ears directly over his shoulders). When he attempts full extension, his head suddenly drops backward so we watch for this and try to protect this from happening.

With that being said and since he is showing good control even if his head doesn't have full extension, we have started working with him on his trunk control. We do this by working with him on our lap with him in the sitting position. Its that same position as you would put someone in to play patty-cake with. We will gently bounce him. We start with our hands up under his arms as to provide full support of his trunk and we gradually move them down toward his hips. Even though he doesn't have enough trunk control for us to be able to move our hands to his hips, that is the goal.

Another technique that we use is to lay down with our hips and knees bent so as to make him a recliner to sit in. As he sits on our stomach, we hold his hands and allow him to sit up with us just holding his hands.

Trunk control is also addressed when he plays on the floor. We put him on his stomach and place his elbows on the floor under his shoulders. This not only promotes good head control against gravity but also assists in good upper trunk control.

These exercises have given us good results but the ability of controlling the head needs to be taken into account before progressing through these techniques. We don't limit practicing trunk control to "therapy times" but also in how we carry him. Carrying him upright on our shoulder vs. letting him lay in a car seat promotes more of an upright posture. When carrying him in on our shoulder, we place one hand on his lumbar spine which prevents the spine from bulging outward.

We also work on Johns pre-verbal skills by talking to him and singing to him. He coos to us and we coo back. We talk to him in the mirror which helps him to see his different facial expressions. I realize that I am probably intense about his therapy and that he will probably learn to do this eventually but it is just not my personality to just let it happen in its own time. I want to help him perform as well as he is able and he has shown me that he is capable of what is given to him.

Thursday, October 23, 2008

Leave It To A Dad

I thought that I would share this light-hearted experience here since it was very funny to my wife and will probably be remembered around here for a while.

The other morning as we were all getting around breakfast and preparing to leave for work and school, I quickly pulled a onesie out of the drawer for John and put it on him not noticing that anything was out of the ordinary. We went on our way and did our usual daily tasks. I even went in at school to pick them up for school and said hello. John is usually the center of attraction at our school and moms just can't resist holding him and passing him around which John is very agreeable.

When my wife got home, she asked who put this onesie on John to which my children quickly pointed to me. She laughed and said that he had it on backwards. He had been like that all day and either no one noticed it or didn't want to tell me I had messed up. I assume it to be the former because some of the Moms that I know are not afraid to point out to a Dad like me when I have "misdressed" my child.

But he was fine. Other than going through the day with a wedgie, no harm was done.

Wednesday, October 22, 2008

To Answer Your Question

Recently, I posted about Down Syndrome Awareness Month with the challenge of getting to know a child with Down syndrome other than your child. The question of the experiences that we have with other children with Ds was also asked. Recently, I was asked about my experiences so I will share in this post.

My experiences with children with Down syndrome have not been personal and I must say that before John came into our life, children with Down syndrome, or other disabilities for that matter, were not very visible to me. Yes, I have worked with many children with disabilities in my career as a Physical Therapist Asst. but outside of the clinic, I didn't seek them out or take the time to get to know them which I am learning now were missed opportunities on my part.

In this setting though I have learned many things about human beings and how we all deal with our disabilities whether it be Ds or something else and that is the human spirit is alive and well in all of us. I have seen how people are able to rise up and meet the challenges that are set before them if they are just given the opportunities. While time lines to meet these challenges are not the same for everyone, I still love seeing people rise above the limits that are often set for them.

On a personal note, I remember seeing a girl with Down syndrome who was with a group of nursing students at the hospital. It was about a month before John was born and I was still working at the hospital. Every so often the hospital hosts a group of nursing students for one of the work rotations. There was a group of them doing the initial orientation and I politely said hello as I walked by. But as I walked by, I couldn't help notice a girl with Down syndrome in the group. She was a very attractive girl and seemed to get along well with the other girls.

I look back at the time as being the time that I came to understand that these children have potential that often exceed what people project. And that is the mindset I think we all should have in raising our disabled child. I'm not sure of Johns potential and I'm not sure I want to know. My goal for John and I challenge yours to be is that I want to raise John to be the best little Down syndrome child that he can be.

Thank you for your readership and comments. Reading your comments, blogs and seeing the pictures of your children are a source of encouragement to me and spur me to keep writing.

Tuesday, October 21, 2008

Unconditional Love

One thing that I have learned in my life is that we all have the same needs in life and are all searching for the same things in life even though some of us cover our needs better than others. There are for sure plenty of things in this world that are used to cover that need. What am I talking about? I am talking about the unconditional love of somebody whether that be a spouse, a child or God.

Since my wife went back to work and I have had the responsibility of John, I have had a lot of time to deal with his diagnosis. Yes, I am still adjusting to the way things are as this is a daily adjustment for me but that is another post. In my day to day dealings with John and seeing how he responds to me so well, I am enjoying that unconditional love from him as we all do with every child that comes into our life.

But when we consider the unconditional love of a child with Down syndrome, I think it may be a different kind of unconditional love as compared to a "typical" child. The words of Coach Stallings comes to mind. He was the head football coach for the University of Alabama in the Bear Bryant era and was the father of a child with Down syndrome. He said of his child (whose name was Johnnie) that he would come to him and give him a big hug and tell him that he loved him every day of his life. How wonderful is that? Isn't that what we are all looking for? But yet these babies are torn apart by the abortionist at an appalling rate. Coach Stallings' son passed away earlier this year at the age of 46 but yet his father tells the story of how his life along with the life of a whole football team was changed by the unconditional love of this man with Down syndrome.

So when I hold my John and he looks me in the eye and "sings" with me, I am touched by his unconditional love for me. I can feel my heart softening and changing because of his love for me. I can't imagine having this kind of love from him when he is grown and my other kids have grown up and gotten too busy to give Dad much time but I am looking forward to it.

So if you have just had a child with Down syndrome or have just been given the diagnosis, let this be an encouragement to you. The unconditional love that will come your way will change your heart and cause you to see life in a whole new way. Yes, the road is tough - emotionally and physically (my road has been more emotionally demanding and not as long) but if you are looking for a love that is unconditional, then the Lord just gave it to you.

Sunday, October 19, 2008

Stats Update

The other day was a weigh and measure day for John. John continues to eat like there is no tomorrow (he also poops like there is no tomorrow also). Johns stats as of 10/17/08 are:

Weight..........11 lbs. 3.5 oz
Length..........22 inches

John continues to struggle with reflux. But by burping him completely after every feed, we are able to minimize the gagging. John has been more difficult to burp than my others. For some reason, it just seems to take him longer to work that excess gas out. About the time I think I have gotten them all out and lay him down, he begins to gag and I have to get him up again and continue burping him. And sure enough, here comes about 2 more burps.

If you haven't participated in the poll that was set up the other day that asks the question of Parental involvement if their childs physical therapy, then I would like to encourage you to do so. This is not meant to put anyone on a guilt trip but to point out the need and importance of your involvement. Also, for those of you that either have not taken the time or just don't know what to do, maybe we as parents can share ideas of how we play with out kids. After all, it is moreless how we play with them rather than having a scheduled physical therapy session with them. So come on, let me know. In future posts, I will begin sharing some things that John and I do together in our play time.

Friday, October 17, 2008

How Much Are You Getting From Physical Therapy?

Do You Provide Physical Therapy To Your Child In Between Sessions? I realize that most children with Down syndrome are receiving Physical Therapy 2 - 3 times per week but that is not enough. Working in phyiscal therapy for a number of years, I came to realize that while there are some people out there that take our advice on daily exercise to heart, many do not take it seriously and therefore expect the Physical Therapist to do their "magic" with the child while seeing them 2 - 3 times per week. Everyone wants good physical therapy outcomes for their child but it is difficult to achieve these good outcomes in a timely manner when physical therapy is limited to 2 to 3 days a week.

Let me challenge you to become a major part of your child's physical therapy. Physical therapy can do amazing things and makes a big difference in lives. Your Physical Therapist is only a coach with knowledge and experience of what works. He/she should have knowledge of motivating the individual to be the best the he/she can be.

I realize what the Internet and books tell me about children with Down syndrome and how they will be or to what level they can achieve. Honestly, I try not to involve myself in learning all of that much less paying much attention to it. I am here to help John to be the best that he can be - whatever that is. And to tell you the truth, he amazes me each day. He is the one that motivates me to keep going.

I love Physical Therapy and the way that it makes my heart feel when I am able to help a person walk or to move a part of their body that has been restricted for years. I also love my kids very much so now that I have been faced with the challenge of providing my own child with physical therapy, I really want to give John the best that I have to offer. Part of my desire for this blog is to encourage other parents of children with Down syndrome to do the same. We may not be able to reverse the syndrome our children have, but I think that we can sure lessen the effects.

Feel free to share some of the things that you are doing with your child. And if you are not, then I would encourage you to ask your Physical Therapist to show you some things that you can be doing in between visits or you may contact me. I am not able to tell you what to do for your child, but I will be happy to share with you some of the things that John and I are doing. Believe me, its not rocket science.

I would really like to know how many of you offer this to your child. Please refer to the poll in the left hand column. My goal with this is to raise awareness among parents that their daily involvement is crucial in meeting goals. Good luck with this and thanks for reading.

Thursday, October 16, 2008

Life with Dad

I just wanted to give you an update on John. He continues to do pretty well in his daily activities. John hasn't settled into a routine yet but he is moving toward that direction. About the only thing that we can count on at this point is that he will sleep 7 hours during the night beginning at either 10:00 or 12:00 which has been very good for all of us. As he is beginning to sleep longer at night, he is beginning to stay awake longer during the day which makes my day a little bit more involved with him but that is alright with me. I enjoy seeing him awake and active. As long as he is awake, I try and keep him stimulated. I will either sit him in the swing by the window so he can look outside or I'll give him his tummy time or I am sitting him on my lap and talking to him. Whatever we do though, it almost always involves music. Music is probably the number one thing that gets a reaction from him. I'll have to get a video up soon but he is beginning to smile and coo with the music almost as if he is trying to sing along with me. This just melts my heart and makes me glad that I have this time with him.

As far as his feeding is concerned, he is going through about 12-16 oz. of breast milk per 8 hour period. He still has a little bit of trouble latching onto the bottle nipple at times although he doesn't seem to have any trouble with this when he is overly hungry so I suspect that this is more just baby play than related to Ds. He asks for his bottle about every 3 - 3 1/2 hours and will down about 4 oz. in one sitting. I can remember when he used to have to be woken up to eat. Now he will let you know when he is hungry.

His tone continues to increase especially when he is at rest. I have noticed that he doesn't go quite as limp as before when he goes to sleep. He still has head lag and still lays like a frog (external hip and shoulder rotation) so when I lay him down, I try to either lay him on his tummy and position his hands up by his head or I will lay him on his side. By laying him on his side, his hips stay a little bit closer to neutral position. We still work on head control during tummy time or while he is sitting on my lap.

He continues to enjoy his jungle gym on the floor. He has really gotten a lot of use from that. The other night we saw a news clip of Gov. Palin in a Wal-Mart store talking with people as she was at the check-out. We noticed that one of her items was a jungle gym similar to Johns. Now I am sure that she probably didn't get the idea from this website but if she did and she is reading, we want to wish her the best with Trig and tell her that we think Trig will thoroughly enjoy that toy. I credit that jungle gym for assisting us in Johns progress. So, if you are lurking about out there, it is a privilege to have your readership.

My parents came up to see John last weekend. They hadn't seen him since his birth and it was good to be able to share him and his progress with them. This is a learning experience for all of us as we learn his abilities and his differences from other children. But all in all, I think they went away with an appreciation for where he is in life and how the Lord has blessed his life. Thanks Dad and Mom for your visit. Come back anytime.

Don't forget that October is Down syndrome Awareness Month. My admonition to you is to learn something about the syndrome that you didn't already know. Feel free to post them here for us all to read. Learning from each other is one of the goals of being connected. I know that I have learned some things from the blogs that I visit.

Tuesday, October 7, 2008

2 Month Check-up

Today John had his 2 month check-up with the Pediatrician. John received a good report on his progress. However, it was pointed out to us that his trunk muscles are not as strong as they should be at this point and that would be an issue for him when he begins to sit. While I agree with this, I am not too alarmed by this as I knew that he would be delayed with this but I do see him making progress. My philosophy with him is as long as he is working forward toward his goals/milestones at a reasonable pace, then I try not to worry too much about his delays. So, we keep plugging away with our plan and our plan is to continue working with him in sitting while giving him plenty of time on his his belly. Even when John is napping, I try to lay him on his belly.

His weight and height measured around the 50th percentile on the growth chart for Down syndrome and the 10th percentile on the growth chart for non-Ds. This is not far off from our other children as they were always on the bottom end of the growth chart. Today he weighed 10lbs 6oz and he is 22 inches long. His birth weight was 7lbs 1oz and he was 19 1/2 inches long so he is growing at a good rate and for that we are thankful.

He also had his 2 month shots today which has made for a cranky little boy so it is baby Tylenol to the rescue. Today he had Prevnar and the combination Dtap/HepB/Polio. Right now, he just wants to be comforted. It's a good thing that Mommy is home today. Dads can provide a lot but when a kid doesn't feel well, there is no place like being in the arms of Mom.

Sunday, October 5, 2008

Down Syndrome Awareness Month

October is Down syndrome awareness month. I'm usually not a very big proponent of awareness months since I think anytime is a great time to make ourselves aware of a cause. But as it stands, I would like to challenge you to make it a point to learn something about Down syndrome this month that you don't already know. If possible, get to know a child or adult with Down syndrome. Feel free to share it here in the comments section - we would all benerfit from learning from your experience.

Saturday, October 4, 2008

New Pictures

Here they are. I know that I have been slow to get some new pictures up but I finally put some out there. John is changing so much and we are enjoying every minute with him. We truly are grateful for him and his abilities. The two albums that are new are labeled August 2008 and September 2008. We are glad to share what the Lord has done with all of you.

I Am Still Here

Hello again and yes I am still here. The transition of taking care of John on a daily basis has kept me very busy with little time for other things. I miss working at a regular paying job but I must say that staying home with John has been one of the best decisions that Joy and I have made. We have committed ourselves to giving John the best start in life that we can give him. This has not only benefitted us/me but we consider it as our gift to John.

When I think about the ways that I have benefitted from this situation, I think about patience. I think that I have learned and continue to learn to have more patience. For example, when giving John the bottle he sometimes has a little trouble getting things to work right for him to get a good seal. I am learning that sometimes it may take extra time from me to help him to get the motions but eventually he will get this. He doesn't require help every time he feeds but sometimes he just needs more time. Granted, this may be just normal baby issues but I don't remember us having this much trouble with our other children. Either way, we know that he is doing well with his feedings because he is steadily gaining wieght. Another issue that I have noticed from John that is different is the reflux issue. I had written about this before and yes we are still dealing with this but we now understand what brings this on and how better to help him. We have learned that after feeding him, he requires burping. Now I know as an experienced Dad that every baby requires burping after eating but John does not burp well at all. I may sit and burp him for 15 min with no burp but I know that as soon as I lay him down, he will have trouble. So I have learned that I need to do what it takes to get it out of him before laying him down.

John is also becoming very interactive. He loves to be sung to and I enjoy seeing the way he studies my mouth movements as I sing to him. His eyes become glued to my mouth motions until I finish singing. He is also begining to smile a lot. His smiles coos are wonderful and I love to hear and see them.

His head control is still improvng as he is better able to hold his head in mid-line and not let it flop from side to side. He still has a little troulbe with front to back but we continue to work on this and I am confident that he will be able to do this in his own time. I know that I may not be able to change his timeline but at the same time, I want to keep him challenged.

Also, I would like to challenge you to visit and listen to the program entitled Remembering Johnny Stallings. This is a story of how a coaches son with Down syndrome impacted not only his Dad, but the world around him. Thanks Rene' for sharing.