Many of you may have noticed a new button in the left frame of my blog. Last month, I was invited to share my blog with the readers of a community of health bloggers at Wellsphere. I consider it as another avenue in which to share my knowledge with the community of Down syndrome which has been one of my purposes for writing this blog.
A couple of weeks ago, I received an email from another online health related magazine inviting me to write some for them. So on September 21, 2009, which is the "publish" date that I have suggested, I will begin to blog one entry per week for them.
So, when things get rolling, I will post a link on my blog to the online magazine. It has really meant a lot to me to be able to potentially reach so many people for the sake of Down syndrome awareness.
As I have said many times, if more people knew about the potential of these children as well as the lessons that they teach us, maybe the abortion rate wouldn't be as high.
Saturday, September 12, 2009
Many of you may have noticed a new button in the left frame of my blog. Last month, I was invited to share my blog with the readers of a community of health bloggers at Wellsphere. I consider it as another avenue in which to share my knowledge with the community of Down syndrome which has been one of my purposes for writing this blog.
Monday, September 7, 2009
I wanted to write about how physical therapy was and still is used by us here at home and whether or not it has made a difference. I understand the discouragements that physical therapy treatments, evals, etc. can sometimes bring. So I wanted to share our story here.
Let me preface this post by saying that John was born with no medical issues, so he was born a very healthy child with Down syndrome.
John has had physical therapy from Dad since the first day of his life. We started with baby massage and progressed to using different textures for tactile, dancing to music, being swung in the air, being held close, the pool, the Bumbo chair, just playing with his siblings, the bouncer, johnny jump-up, etc.
All of these tools have helped at each stage in his life in order to teach a new skill and to how to perform the skill correctly. Teaching John to perform the skill correctly is the operative phrase here.
Currently, John is pulling up and standing with one hand assist and walks with two hand assist. By our evaluation of John, he is probably at a 8 to 9 month level which I'm not sure if that puts him behind or in front of the Down syndrome curve. Mostly, it tells us that he is learning and we are pleased with that.
As far as the question of how much physical therapy has helped him, that is difficult to measure. Personally, I feel that the first 3 months of therapy has probably been the most beneficial for John. The other 9 months of therapy has also helped but I believe the initial 3 months gave him the jump start that he needed in order to self motivate and to build his confidence in order to take risks and to try new things.
Another important thing that physical therapy has done for John is to prevent bad patterns of movement and promote patterns that are more functional. We have all worked with him on developing functional patterns of movement that he will now make thos movements himself.
One suggestion that I would like to leave you with is to communicate with the entire family about what is happening in therapy and what is being worked on so that everyone that plays with your child can encourage correct movement patterns in the child. The more the child uses those correct patterns, the more he/she will begin to use them automatically in daily play. Learning good functional patterns early will benefit the child later in life when they become more active and independent.
Tuesday, September 1, 2009
John continues to thrive and learn new things. He is a very happy little boy who really enjoys interacting with people most of the time. However, he is developing his own likes and dislikes and he is not afraid to let them be known, but overall he is a very loving little boy.
I have started back to work so John now goes to a stay at the home of a friend of ours. She is a God-send for John as she really loves and cares for him just as he is which is exactly what he needs. She also has a 3 y/o of her own at home who is very interactive with John so he is really enjoying himself.
To our surprise and with thankfulness, we are able to report that despite being in another home, John has continued to be very healthy - no ear infections, major colds, etc. although we do keep him suctioned out by using his bulb syringe at the first sight of trouble. And the lady who keeps him has taken up with caring for him just as Joy and I would if we were here. We are very thankful to have a person who cares and loves him as we would.
John's activities include jumping in the 'Johnny Jumpup' and in the 'Jumperoo', climbing, crawling, standing and taking steps while holding our hands, and laughing and charming everyone he comes in contact with. As a matter of fact, it is difficult to keep him still unless he is eating or going to sleep.
As for eating, he now has two bottom teeth and is working on the two top teeth for which we are happy to see, so we have increased his diet to include more table foods such as corn, green beans, and ice cream to mention a few. John has never had trouble swallowing so we have not worried about introducing new foods to him. He still takes a bottle of either formula or breast milk, nurses, and eats jars of #2 and # 3 baby food. He drinks some whole milk from an open cup (with help) which he seems to enjoy.
He is a very alert baby that is very vocal and expresses what he wants. This gives us hope that his brain cells are growing and working fine. It also motivates us to work with him more.
One thing that I am currently working with him on is his ability to crawl with his knees underneath him rather than out to the side. He has always done this and it has not improved any. So I am using red thera-band to strap his thighs together. This is done under close supervision and only for about 1 hour/day. I have noticed a change in the way he is able to bring his knees into a more normal position, but if you try this, it takes persistence. And I'm not sure even with persistence that I am going to be able to correct Johns crawling before he learns to walk. It makes me think that I should have started this earlier in his crawling because now that he has learned to get around with his knees out, I'm not sure how motivated he is to change. But I keep working on this and hope that he learns to walk soon.
Thanks again for reading. I have appreciated reading your comments and reading the posts about your children. I hope that I am able to offer some bits of insight from a physical therapy point of view that helps...and feel free to offer your stories or ask questions. I love to share our story and tools with people. One thing that I leave you with - don't get discouraged. I have learned that my John grows and learns by his own clock.
Saturday, August 22, 2009
The other evening before the start of school, we had an evening of getting everything together - back packs, lunches, etc. One of the things that had to be done was haircuts for all. It had been most of the summer since my boys had had a haircut, so they were overdue. So, I got the clippers out and started down the list of boys.
John was the first get one as he had grown a head of stringy hair that hung down into his eyes. It is true that it was cute and made him more of an irresistible baby, but those golden strings of hair needed to be tamed.
So much to my wives dismay, our little baby now looks more like a little boy. We find it interesting that he looks almost exactly like one of our other children when they were his age, and very much like his Dad at that age.
We feel like this has changed him but mostly it has changed our perception of who he is. We no longer see the little helpless baby that he once was. We see a boy with a big boy haircut and two teeth that does not like to be held anymore and loves to takes risks and explore his world - he is now standing and walking with hand held assist and even wants to let go to try it himself resulting in a few bumps and bruises.
He loves table food as we are trying to introduce as many as possible in order to increase his taste for foods and to increase his taste for different textures. We feel like we are in the middle of a transition with John as he is being challenged daily to be more independent and to develop more self motivation.
Here is our John sporting his new haircut and showing off his new independence. Hope you enjoy them.
Saturday, August 15, 2009
John had a great day on his birthday and we took lots of pictures. I thought that I would share them here.
Also, I wanted to give an update on what we were doing. I have recently gone back to work and am still going to school, so the blog has fallen on the priority list. But I still get on here from time to time to catch up with what is going on with your children as I have missed chatting with you and hearing about how you are dealing with life in the Ds world.
John is continuing to learn new things. We are introducing him to new table foods that he is able to chew without having a mouth full of teeth. Speaking of teeth, he now has two bottom teeth which my wife says are very sharp - I will take her word for it. But after a long fussy month of him working on them, we are all glad that they are in.
Weight wise, John could be doing better as he only weighs 16 lbs. 6 oz. We would like for him to eat more but it is sometimes a struggle to get him to eat. And being without teeth, there is not much that he can eat right now. We are going for the high calorie foods and supplementing breast milk with high calorie formula. We are also offering him foods very often. I think one of the reasons is that Dad has gone back to work and on the days my wife and I are not with him, we are not sure how much he eats. As I have always said about children with Ds, they are easy to ignore for various reasons but mainly they do not usually throw a fit or cause a stink like a typical child would if he/she didn't get a meal on time. So we have resorted to different methods in which to feed him but that is for another entry.
John is a very playful and outgoing boy so he loves to be on the floor and play with his light up toys and bounce in his bouncer (I realize that these aren't popular among some Therapist, but this Therapist thinks they are great if they aren't used too much - more on that later).
He is climbing up on the steps so we are working with him on proper technique of pulling up. As you know, Ds children do not move the same as a non-Ds child so we are working to teach him the correct patterns.
John is taking steps with hand-held assist. We have been working on this for a couple of months but have just seen him initiate the steps himself. We are very excited about this.
That is a brief update on John. He continues to warm our hearts with his smile and amaze us with his motivation to learn new things. Thanks for reading my blog. And now you can read my blog at www.wellsphere.com.
Sunday, August 2, 2009
John Austin Hill turned 1 year old on Wednesday, July 29, 2009. The day went the same for him as the previous 364 days of his life as he had no idea of the significance of the day. But it was very different for my family and I as we marked the day with special surprises, thoughts, and time for John as we showered him with the love and appreciation for his life and membership into our family. As we celebrated with immediate and extended family, it caused me to reflect upon the past year with him.
It would not be accurate for me to tell you that our life hasn't changed because it has. The question is has it been for the worse or for the better. The answer will differ depending upon ones frame of reference. If that question were asked of a person or couple who has the goal of independence of children and a freedom to someday enjoy life without the responsibility of a child to care for, the answer may be negative. Or if a family prided themselves on keeping a neat attractive appearance in the community, the answer may also be negative. I will admit that I sometimes fall victim to this line of thinking. But I then have to reign in my thoughts and reassess the real value of life: is it to keep up appearances and a lifestyle of doing for me or is it about relationships and passing on a legacy in the children we raise. For my wife and I, we made the decision early in our marriage that relationships were much more important than any amount of money we would make or possessions that we would acquire.
This is not to say that we do not struggle with the negative thoughts. Any human would but this is one of those situations in life where ones attitudes, faith, and beliefs are tested. It is true that our life has changed this past year as life has slowed down and we have stayed close to home. John has required a bit more attention than our other children had at this age, and by choice, my wife and I chose that I would be a stay at home Dad during this initial phase of his life in order for me to help him with some skills that will be foundational in his life of learning.
With all of that said, John has greatly blessed our lives in more ways that we could have ever imagined. The extra time spent feeding him, caring for him when he has been sick, working with him to help him master new skills, etc. has all been life changing for the Hill Family. We are proud of all of our children, but John has breathed a new life into this family like none other.
We give thanks to the Lord for choosing us to care for this child and for the lessons John has taught us this past year. We are also thankful for a healthy Down syndrome child. John - may your light shine as bright as your sister and brothers.
Sunday, June 7, 2009
Since John has Down syndrome and we have four other children who do not, I thought it would be helpful to share some of the differences and similarities of John with my other children. As a side note, some of these differences may or may not be entirely related to him having Ds. First the differences.
- John does not have teeth at this point, so he is limited on what he can eat, whereas our other children had a few teeth if not more at this point.
- John is currently learning to crawl with his belly off the floor, whereas our other children were cruising the furniture at this point.
- John takes longer to eat than our others did. Three reasons why: John gets distracted easily as he would rather socialize than to eat; tongue thrusts; and when he gets excited he begins to flail his head and arms around.
- John is not gaining weight as fast as the others did at this age.
- He seems to be prone to illness (croup for one).
- The few times he has gotten the croup, it has been more difficult for him to get over it.
- John requires the bulb syringe to clean out his nose almost on a daily basis, whereas our other children could clear the mucus at the back of their throat by themselves.
- Despite children with Ds having small ear canals and being known for ear infections/tubes, John has only had one ear infection in his life.
- We are just as crazy in love with him as we were with the others.
- John is just as interactive as the others were at this age.
- John is a very happy baby.
- John has just as bad of a temper as the others did.
- John loves books and to be read to just like my other children did at this age.
- John is just as curious about things.
- John is tests the boundaries just like our other children did (he will do something like drop things on the floor or get into things he knows he shouldn't and then look back at you).
- John responds to no and being redirected the same as our other children did.
- Everything he finds on the floor goes in his mouth.
- John doesn't mind being passed around at big gatherings.
- John can learn cause and effect just as our other children did. (thank you Baby Einstein and other light up toys).
- John responds to his name being called.
- John looks just like my others did at this age.
This is definitely not a completed list. But there are many more similarities than there are differences between John and my other children. All too often, we (my wife and I included) react negatively to these children because we think that they will require more time, money and effort. That may be true for some, just as there are non-Ds children who would fall into the category. But I can tell you that after 10 months with John, things have been more of the same little baby than have been different. I hope that has been true for you.
And for those of you that are looking toward a life with a child with Ds, I hope that you are able to take a little comfort from these words. They are truly worth the little bit of extra effort and do not deserve abortion. They will have a positive change on you and your families life.
Friday, June 5, 2009
OK, I should know better than to make a post after a month away without it saying anything about John, but the previous story just hit me hard and I had some thoughts to get off my chest. Thanks for indulging me.
John is doing very well. He is now mobile and we are learning that we desperately need to keep everything off the floor. He is not crawling on all fours yet but he manages to commando crawl to where ever he wants to be pretty fast. He has started to put his knees up under him and get his belly off the floor some of the time but he moves a lot quicker commando style. I am also working with him on standing and sit to stand. This is mostly to teach him the proper mechanics of this movement while also allowing him to bear weight through his hips and legs.
My other children are out of school now, so John has lots of entertainment and opportunities to learn more things. He does not have teeth yet, but we are praying they break through soon which would make our life a lot easier at the table. His appetite is good but he is limited in what he can eat without chompers which is difficult for him and us because he wants desperately to eat what we are eating.
He now weighs 15 lbs. 11 oz. as of today which puts him at the 25th percentile for his weight. He is also at the 25th percentile for his height and head circumference also. I know this does not sound like a lot (it doesn't to me), but he is where a lot of our children were at his age. So thank you Mr. Genetics.
I hope that everyone is doing well. I have enjoyed my break from blogging as it has helped me to refocus on other things. But I have missed reading about your wonderful children and writing about my John.
So, here are some updated pictures of John that were taken by a friend of ours whose child is in the same school classroom as our daughter. She had a field trip one day and John and my wife went and had a fun time with her (and evidently with the camera). Thanks Wendy for the pictures - we love them.
Tuesday, June 2, 2009
As I reflect back on the killing of one of the few abortionist who provided abortions in the third-trimester, I am reminded of just how far off-course mankind has come. To take something so blatant as mutilation of a 22 - 40 week old baby, and it is a baby at that point, and treat it as if it were just another day at the office is beyond anything that I can comprehend.
When I let my mind think about these things, which I have a lot this week, many questions come to mind. One is the question of why the contradiction of our laws regarding the taking of life. We put to death a man or woman who is found guilty of killing someone with the intent to kill and we have ruled that putting to death another for the sake of giving them relief from a terminal illness is unlawful. But yet we allow Doctors, of whom I might add have taken an oath of "never do harm to anyone" and "I will not give a lethal drug to anyone if asked, nor will I advise such a plan; and similarly I will not give a woman a pessary to cause an abortion", to lawfully and legally take the life of a baby who has a beating pulse, recognizable face, lips, 10 fingers, 10 toes, 2 ears, 2 eyes, 1 pair of eyelids, 1 pair of eyebrows, 2 arms, 2 legs, the formation of vital organs, and a beating heart just for the mere reasoning that the Mother doesn't want it.
How can this be justified? Why do we apply the law for one group of people and not another? Have we given great value to those that can speak or think for themselves?
Another question that has plagued me this week is where are we as Christians and people who frequent church, where the Bible is supposed to be taught, when it comes to this subject. We are obviously absent seeing as how this man was a religious man who frequented church and where his wife sang in the choir. Have we gotten used to abortion so much that we no longer see it as taking the life of another? How could this man have been allowed to continue practicing his murderous deeds and still maintain his religious life? I know that we as Christians are called to forgive, but I also believe the Bible teaches that a person can reach the point of unforgiveness if that sin is unrepentant and becomes a part of their life.
So I believe the implications of this are negative for the Christian church and should be a wake-up call for us and for our Christian leaders.
When I look into the faces of each of my 5 beautiful children, I can't imagine ever intentionally robbing them of the life that I chose to give them when I implanted my wife with my seed. So I ask: are we confused? We choose to kill what we have chosen to give life.
Below is an ultrasound of a 20-week old baby. The age of gestation in which Dr. Tiller is said to have aborted babies is 21-weeks and beyond. I know that I should feel compassion and sympathy toward the Tiller family. But frankly, I find it difficult to have that attitude toward a family or a church who would condone such atrocities.
Monday, April 13, 2009
When we first became aware of John's diagnosis, it was very difficult to make the transition from the world of no Ds to a world with Ds. The isolation that one feels, not to mention thinking about how this will effect your life as a parent was on our minds constantly. Isolation became a reality for us as we began to feel that no one understood what we were going through as parents of a child with special needs. The activities we once enjoyed with other adults had to be put on hold for what seemed to be indefinitely or until we figured out this new world of ours.
Blogging filled a void for me that I enjoyed very much. It has taught me so much by giving me the opportunity to meet other parents of children with Down syndrome and to learn from their experiences and to listen to their stories. Blogging also gave me an avenue in which to write my thoughts and vent my frustrations. I can honestly say that I have matured a great deal in this new journey in the last 8 1/2 months and blogging played a role in that.
But now that we are 8 1/2 months into our journey and we have grown so much, we are feeling more of a peace that things will be okay and a confidence that we will be able to handle the bumps along the way. That is why I have chosen to take a hiatus from blogging.
As John gets older and more mobile, he is asking for more and more of my time. There are so many things that I want to teach and show him as it seems like the more time, I spend with him, the more he learns. John is now at the beginning stages of crawling which he wants to do so bad and I am determined to help him get there.
I am thankful for this opportunity to write down my thoughts and have them read by so many people across the globe. I hope my thoughts and words have encouraged you in your journey. Though the streams of life seem to flow against children with special needs and their parents, don't give up on them. I have seen with John as I know you have with your children, these children are a blessing and have more potential than they are often times given credit; they just move at a slower pace and require more patience.
Tuesday, March 31, 2009
John's week begins with church on Sunday morning, and then again on Sunday evening. After the evening service, we have supper together as a church family. It is a great time of getting to know people as well as getting a good meal. It is also a good time for John to make the rounds with the many available baby holders. One would think that the ladies and teen girls would be the ones waiting to hold baby John but not John.
Even though he gets his share of female holding, John responds well to the guys. So the other night when one of the young guys was holding him while Joy was feeding him, we weren't that surprised.
On Monday mornings, John and I sometimes meet some of the men for breakfast. And again, everyone there has gotten to know John as he is not a baby that you can ignore easily. One of the reasons that he makes it difficult to ignore him is that he is a very interactive baby. He talks to everyone that will talk to him....and to some that won't talk to him. It seems like the more people there are, the more John like it.
And he is beginning to make more sounds that just baby gibberish. I am proud to say that John has started with the dadadadada verbiage. So if anyone has any question about him being a Daddy's boy, all they have to do is to listen to him for a while.
Saturday, March 28, 2009
Siblings are a great form of therapy in and of themselves. They provide great interaction and entertainment. John is blessed to have 3 brothers and 1 sister that think he is just the greatest.
Very rarely do we get to sleep in at this house as we have over the years trained our kids to wake up at 6:00 to give us all plenty of time to eat together as a family before we face the hectic school/work world which I highly recommend for any family wanted to get to know one another as it can be very enlightening.
Yesterday morning (Saturday) was a rare day of having everyone home for the day without having sporting events to attend (thank you snow). So my kids actually slept in until 7:00 or 7:30. This morning when they woke, John was up in his crib but Joy and I were still asleep. So not wanting to disturb Joy and I, our 7 year old went into Johns room, used a step stool to reach into the crib and get him out. He then laid him on a blanket and played with him until John couldn't be entertained anymore.
Juli, our 9 year old, wrote a poem about John for a 3rd grade class assignment that I thought I would re-write here:
was born last July.
He makes a bunch of noise
when he plays with his toys.
We laugh at George's jokes
and he laughs too -ha ha ha ha.
My little brother John,
he coos and he goos
while he plays with his ball.
Oh, he has it all.
Siblings are one of the best forms of therapy for John. We can really tell a difference in his alertness and interactive abilities when they are around.
About a couple of months ago when we were searching to increase Johns exposure to different foods, we started him on Yo-Baby yogurt for breakfast every morning. He loved it and took to it well and with cereal added in, it gave him a little bit more consistency to get used to.
Recently, we ran out of Yo-Baby and didn't get anymore for a while. We just figured that he could eat another of his favorite foods for breakfast. But after a few days of going without it, we discovered one benefit of Yo-Baby that we overlooked and that is that the yogurt kept him regular. On the yogurt, constipation hasn't ever been a problem for him. But not getting his daily dose of it has firmed things up quite a bit to where he has a much more difficult time having a BM. So, it is back on Yo-Baby for him.
Wednesday, March 25, 2009
My last post brought in a few questions about my physical therapy time with John, so I thought that I would share a few principles that we use with John. Before I share those, I would like to begin by saying that John was afforded a beginning to life with no health obstacles to overcome. When he was born, we were able to focus our attention on his needs such as physical therapy, food, sleep and a dry diaper. There was nothing else for us to worry about health-wise. Now, on to the principles:
1. Don't give up - I realize that it is a daily struggle and sometimes it becomes more then we think we can bare. It is those times that we wonder if the time we invest in therapy really does matter. As a dad of a special needs child and a Physical Therapist Assistant, I have seen PT make a big difference in a lot of lives. So DON'T GIVE UP!
2. Make it part of your life - by that I mean try not to separate your therapy
time from your play time. Integrate the two. Making therapy time a separate time from the rest of your day will burn a person out. This also makes it easy to skip therapy during the days when life gets hectic.
3. Floor time - babies learn so much on the floor. The floor gives them an
opportunity to stretch, to learn eye-hand coordination as they play with their toys and to learn about their bodies and how it moves. And when you are giving them their floor time, don't just leave them on their backs. I realize that they can learn a lot from being on their backs, but they learn so much more on their belly. On their belly, they are continually working those back muscles which they will use to sit up.
4. Love them - create a loving environment where the child can feel secure in your love for them and of their place within the family. This helps them to open up and learn.
5. Don't compare them - your child is not my child and my child is not your child. They are all different with different genetic makeup. And from my experience, John is governed more by his genetic makeup than he is Down syndrome. Comparing children/babies will only give you heartache and disappointment because there will always be someone out there that is faster, smarter and richer. Instead of comparing them, challenge yourself to help them to be the best that they can be. Find
their full potential and demand it from them.
On a more personal level, John and I spend less formal "therapy time" now than we did at the beginning (which I began working with John the first week of life which I would advise any new parent to do if there are no other health issues that would get in the way). In making therapy a part of our daily life, John is on the floor often around here and by that I mean on his belly. Of course now it doesn't matter whether we place him on his belly or on his back, he is going to roll wherever he wants to but by placing him on his belly, I know that if he wants to go to his back, he is going to have to work for it. When he is on my chest, he is on his belly and if he is sitting on the couch by me, he is sitting up in a way that he has to do most if not all of the supporting himself.
The more they work those muscles, the stronger they will get. And one day, they will be strong enough that they will start doing it themselves. Again, I would like to point anyone to my "email me" label on the left hand side of the page. I will gladly share with anyone what I know so that you can better help your child reach his/her full potential. Remember, you can do this...it requires patience and persistence.
Below are pictures of John's playtime which required nothing of me except to be in the same room with him to make sure he doesn't tumble over and hurt himself. Although, he has tumbled so much that he has learned how to transition himself over on his belly when he tumbles.
Tuesday, March 24, 2009
Working as a Physical Therapist Asst. for many years, I have learned that people give many reasons for not participating in therapy. Among the reasons given is that the patient believes he/she will progress just the same with or without therapy. There may be a little truth to that statement although it is a statement without a full understanding of what physical therapy can accomplish if done consistently. Let me explain.
While we as parents may not have control over who our children will be as I believe that we all have a path in life that we are wired to follow, we do have control over abilities like strength, eye-hand coordination, thinking before we speak, manners, throwing a ball, socialization skills, etc. We have all seen the movies or read the books of what happens to children when we ignore them during their molding period. Often times we expect that our children will learn these things from osmosis and while there are some exceptions, most of these traits/skills are all learned.
It is the same with therapy, especially for a child with special needs. Children with special needs (CP, Ds, Autism, etc.) simply do not progress like children without these diagnoses. The muscles in children with special needs are not as balanced, meaning that some are weaker than others. It is this weakness that sets the child up to learn wrong movement patterns thereby just exacerbating the problem further because the weakness is never strengthened.
A Physical Therapist is trained to spot these bad movement patterns and to help the child learn the correct patterns thereby strengthening the muscles and bringing all the muscles more into balance. A person who is better balanced strength wise is going to have better posture and better coordination. Good balance also plays a role in good health. For example, a person with uneven balance distributes body weight differently over the hips, knees and ankles which can be deforming if not addressed. Also, poor posture can decrease ability to take deep breaths which can lead to other things.
So yes, a child/adult will heal from an injury or learn to walk, etc without the help of a Therapist but the quality of life will probably not be the same as if the person received therapy. So I leave you with this encouraging word - therapy is a much needed service in the life of your special needs child. We all want our children to grow up to lead happy, productive and long lives so it is important to give them the tools that they are going to need. Unfortunately, one of those tools requires learning how to use all of the muscles we have so they can move correctly. Make it a priority to take them to therapy sessions and to set aside time during the day to work with your child (even if it is 15 minutes). Our children are fully dependent upon us to provide everything for them.
Saturday, March 21, 2009
Lately, there has been talk about our Presidents faux pas on the Leno show last week when he used the Special Olympics as the butt of a joke. It was very distasteful and uncalled for by anyone, especially by a sitting President who is highly educated and a very visible personality who you would think would be well versed in topics to avoid in public speaking.
Mr. Obamas unfortunate slip of the tongue has surprised a lot of people, as it was unexpected from such an educated man. But if you stop and think about the number of times that comments like this have been made and by whom, I think one could conclude that education level doesn't have a lot to do with offensive speech; however, the heart attitude of a man does.
For example, a person can be educated to the differences of people and the sensitivities of different groups and that will increase awareness and understanding but may not have a lot of influence over how a person views the world and people. This is because how a person views the world and people around them is not only learned from books, but also by watching, by experiencing and by learning from those around us.
So in our attempt to "change the world" and the habits of offensive speech, education is only part of the answer as Mr. Obama has shown us earlier this week. A change of heart may be in order for us to see a permanent change.
"....for his mouth speaks from that which fill his heart." Luke 6:45b
Thursday, March 12, 2009
First, an update on John and then on to the answers to your questions. John continues to do well. We are working on sitting unassisted which he is now able to do this for a couple of minutes while reaching in front of him. What usually topples him is when he turns his body to either the right or left, but he will get it with practice. He is able to maintain his balance if we stabilize his legs which is what we did when first starting to sit. We are also working on his standing which John is able to stand with us holding his hands.
The reason that we are working on standing is not that he is ready to walk because he is no where near that point. But I want him to feel what it is like to bear weight through his hips and his ankles. This also gives me an opportunity to see whether or not he distributes his weight evenly over his ankles.
This leads me to the topic of orthotics. Personally, I think that orthotics have their place and can help in warding off musculoskeletal problems. Before using orthotics to correct a postural deviation, one has to look at whether the deviation is skeletal or muscular. This analysis is best done by a PT who is familiar with this type of evaluation.
Weak muscles can and should be strengthened to hopefully improve the issue, whereas skeletal deviations often require more aggressive intervention. To apply orthotics to a child with muscle weakness may serve to weaken the muscle further; however, the use of orthotics can play a role in cases of muscle weakness. Therefore, it is important to get a proper evaluation as to the cause of the deviation.
It is important to remember that children with Down syndrome vary just as much as children without Down syndrome. Although it is important to note that children with Down syndrome do have a tendency to have skeletal deviations in feet and hips that require orthotics.
As for the SPIO trunk support, I will give my thoughts in the next post.
As for teaching a child with Down syndrome how to read which was also asked, I will have to pass that question off to a more experienced parent of a child with Down syndrome. I will say that Joy and I have always read to our children from a very early age until they were able to ready independently. While I have no first hand experience with teaching one of these children to read, we have already begun to introduce John to books by reading to him. John has 6 people in this family that love to read to him and we all share in that, so hopefully we will see some fruit from this in a couple of years.
As for the reading program asked about, I have not heard about this program.
Friday, March 6, 2009
First, let me say that I do not claim to have all the answers, or all the questions for that matter. But I do feel that my training and my work experience has helped me to understand what John needs and how I can help challenge him.
It is also my hearts desire that other parents of Down syndrome children be educated in understanding how to help their child. The worlds version of the story is that children with Down syndrome have very limited potential, but it is my opinion, and hopefully other parents of children with Ds, that our children indeed have more potential than they are given credit. I realize that most children with Down syndrome see a Physical Therapist on a regular basis which I advocate doing. It is also preferable that your Physical Therapist be the one who instructs and educates.
But sometimes, Physical Therapists either do not take the time to educate or do not feel that education is part of their job. So, I wanted to write this entry to make myself available for any questions. While I am not able to provide specific information about a particular child (except for John), I will be glad to offer any information and support that I can based on my experiences as one who has worked in the field and as provider for John. And I am more than happy to answer any questions about John.
My desire that no parent should feel at a loss of knowing how to teach their child has prompted me to write this post. And I feel that is the case with some and that shouldn't be. I am hear to tell you that there is more hope for your child's future than you are led to believe.
So with that said, I offer this post. Questions may be posted in comments or emailed to me directly. I will try to answer questions as they arise and I will include the questions and answers in a future post.(Can you tell that I miss my job?).
Tuesday, March 3, 2009
The other day, John went for his 6 month check-up (we are late, he is now 7 months - such is life). But I wanted to document and share the findings. He was sick earlier this month with a respiratory and ear infection so he didn't have much of an appetite during that time. Yes, I admit that I pushed him to eat during that time which means that a bottle of 4 oz would take 20 - 30 minutes to get down when it normally would take him about 10 - 15 minutes. We would have to stop and use the bulb syringe along the way because the boy just kept pulling off the bottle because his nose was partially clogged. His eating of solids was virtually non-existent.
But he is pretty much back to himself - playing and enjoying his brothers and sister again. His appetite for solids has come back to full strength and he is cranky when he doesn't get them. For example, this morning, I took him with me to have breakfast with some other guys from church. I didn't have any solids with me as Joy had just nursed him before she left for work so I felt that I would be safe. But I was wrong, he stared at my food and watched me eat the whole time. I felt so bad for him that I slipped him a few of my scrambled eggs although that is not what he usually gets. He was happy to get back home to his cereal.
The things he now enjoys eating are squash, blueberries, carrots, cereal, bananas, biter buscuits, sweet potatoes, and fruity yogart. He is getting much better at his aim with his biter biscuit as now he can actually hit his mouth whereas when we first introduced the biter buscuit, we would stab himself in the eye with it.
Here are the check-up vitals:
- Weight: 14lbs 5oz. (~ 45th %)
- Length: 24 3/4 inches long (25th %)
- Head Circumference: 17 1/2 inches (+ 2 Std Dev above 50th %)
He also got 3 more of his vaccines.
John is now working toward sitting up independently which he can do for about 5-10 seconds before he topples over from turning his body to look behind him or to the side of him. But he is progressing toward that mark. He is also rolling from back to stomach and vica versa. He spends a lot of his time during the day on the floor playing with his hanging toys on the gym. At this point, it does me no good to leave him on his stomach unattended because he stretches and rolls wherever he likes which these days, he is enjoying being on his side while playing with the toys with one hand.
We are very happy with the way he is progressing. Without looking it up in a book, it seems to me that he is about a month behind which doesn't concern me any as long as he is progressing forward. At this point, he is learning and I am satisfied with that no matter what the pace. We're having a great time with this boy and if it takes him a little longer to meet those milestones, then we just thank the Lord that we have more time to cuddle and hold him.
Sunday, March 1, 2009
It has been great fun for me to write down my thoughts and to be able to share them with family and friends. But I had no idea that so many would visit. Not only has having John been a learning experience for us but writing this blog and keeping up with people who have visited and from where has also been a learning experience.
To date, this blog has had visitors from 36 countries. One of our goals in writing this blog has not only been to share our experience with others, but also to provide a little insight from a more therapeutic perspective. I hope that we have been an encouragement, I know that you all have been to us. Below are the countries that have visited:
United States / Canada / United Kingdom / Australia / Ireland / Malaysia / Egypt / India / Singapore / Norway / Brazil / France / Germany / Costa Rica / Sweden Switzerland / South Korea / Mexico / Philippines / Puerto Rico / Columbia / Japan Netherlands / Nigeria / Sudan / Oman / United Arab Emirates / Peru / Kuwait / Chile / Venezuela / Namibia / Croatia / Maldives / Greece.
Keeping up with the different countries that have read this blog has been both exciting and an education for us. Thank you very much for reading and we invite you to say hello the next time that you are at this site.
We are reminded of the fact that even though we are from different parts of the world, we deal with a lot of the same issues and we can learn from the experience of others.
Friday, February 27, 2009
I have been thinking a lot lately about the issue of Down syndrome children being mentally delayed and I have accepted the fact that my son may be mentally delayed. The degree of delay, if any, remains to be seen and we will cross that bridge when we get there. For right now, that doesn't factor into how he is treated by the ones who love him and I would hope that it would not be a factor in how people treat him in the future; however, I realize that may not be the case.
But there is one question that keeps coming to mind which is what is so wrong with being mentally delayed? We often times act like it is unacceptable to be mentally slower than the majority. On the other hand, we sometimes act like it is unacceptable to be mentally faster than the majority. Do these people not enjoy life as we do? Yes, they may have to settle for more service oriented jobs with less pay and are often limited in career achievements, but is that so bad? Does being smart equal being happy in life or does being mentally slow mean a life of unhappiness?
I suggest that the answer to both questions is no. We are too often led to believe that in order for a person to be happy in life, the person needs to have x amount of education and make x amount of money, live in a nice house in an upscale neighborhood and this and that. After a while, it becomes a rat race just trying to accomplish all that we are to accomplish to be happy only to find dissatisfaction once we have "arrived".
When Joy and I first became aware that John would be born with Down syndrome, (in the first trimester of pregnancy), we both prayed that the Lord would bless us with a child able to relate with God and people. At this point in John's young life, he is very able and desiring to relate to those around him. As a matter of fact, it sometimes seems that he would rather relate than to do anything else. John draws people to him with his smiles and bright blue eyes. He has the ability to make a person smile and forget about the stresses if only for a minute.
This ability is what changes lives for the better, not the intellectual ability. Our lives have been changed forever by his ability to give love and we look forward to many years of the same. He may not graduate with honors or go to college or even learn to drive but I don't think that will stop him from showing love to those he meets.
...sometimes it seems that he has a better understanding of the priorities of life than I do.
Thursday, February 26, 2009
Lately, there has been a lot of hype over the use of the word 'retard', and I guess either I just don't get what all the fuss is over or my child is not old enough yet for it to affect me. Either way, it seems to me that we sometimes create issues for ourselves that doesn't need to be which I have been guilty many times. It does seem that the stronger we feel about a certain issue, the more we are easily offended by people who abuse the subject whether it be mental or physical retardation, social issues, or politics.
People have been misusing words for years now. This is partly because of ignorance and partly to aggravate and get a rise out of people. I have been a party to this in my past as I am sure most people have at one point in life. And to be honest, my motive was to get a rise out of people, for shock value, to get attention which is what I usually got.
I realize that this word is highly offensive to parents with children who are indeed delayed (which is what the word really means anyway), but there are also many other words that are just as offensive to other groups of people.
I guess it just depends upon what 'group' you are in that determines which words offend you. Yes, the word 'retard' offends me, just like the word 'goddamn', calling people 'assholes', and using the 'F' word offend me. But the way that I have learned to deal with offensive words over the years is the way that I have dealt with offensive people over the years - 1)politely let them know how their choice of words offends me and to ask them to refrain from use of those words while around me, 2)if the use of words does not stop, then I will usually stop my association with that person. This is the way that I have taught my kids to respond to people who use words in an offensive way and this is how I will teach John to respond.
I have found that the people who really want to be my friend will respond positively to my pointing it out to them while others just couldn't care less. And it is the people who couldn't care less that are in it merely for the shock value so why should I continue to give them ammunition by letting them get to me.
Sure, I would like to live in a world where there is no offensive language used but honestly, there are just some people in this world, and I admit that I am one of them sometimes who do not care or think if we offend people or not with our speech.
Ignorance and insensitivity of people is not worth making me unhappy - there is too much of both in the world for that.
Wednesday, February 25, 2009
During this past 6 months, I have noticed many differences between John and our other children. But the one that has caught my attention the most is what motivates them to learn new things like talk, eat, smile, laugh, etc. I realize that all children are different and is naturally motivated differently, but what I am talking about is while they are babies.
Looking back on the first years of my other children, it seemed as if they were on auto-pilot. Milestones came and went with no intervention needed - just the opportunity. They even seemed to make sure they had opportunity with wanting to be put down on the floor or crying (loudly I might add) when they needed a new diaper or wanted to be fed.
John seems to learn just as much as my others did, just at a different pace and also with more encouragement. Whether we are at church, school or at home with his siblings, he definitely comes to life when others interact with him. This type of interaction seems to energize him to press on and keep going. Whereas if I lay him down and go off to do my other work, he often times goes on to sleep and will sleep half the day. I know that this is ok periodically, but it makes me think that I couldn't afford to do that to him on a daily basis.
I have also noticed that John would rather relate to people than to sleep or eat; I guess he is too afraid that he will miss out on something. For example, if we are feeding him and someone walks into the room or if he catches a glimpse of someone behind him, he will stop eating and turn in his Bumbo Chair to see who it is and stare at them until they talk with him. We started out feeding him in an empty room so he would have no distractions, but now we are purposely feeding him with the whole family present so he will learn to focus while other things are going on.
He is truly a very relational baby and we love him that way. He is so full of love and smiles that people can't help but speak to him or hold him when they are near him. This will be the character trait that sets John apart from others - his ability to speak to the heart without really saying a word.
Relationships - they are wonderful gifts that changes lives forever.
Monday, February 23, 2009
John at times goes to meetings at the hospital with my wife since she sits on a Women's and Children's committee at our local hospital. Other Pediatricians as well as OB/GYNs also attend. When we had John, a lot of the Drs at the hospital knew of our newest addition as well as the fact that he was born with Ds. It is interesting to see their reaction
So when my wife takes him to these meetings with her, there is the opportunity for his delivering Dr. to see him. I get real excited about this because it gives us a chance to show him John's progress without us saying a word. Well, at one of the recent meetings, his delivering OB asked to hold him which he did and played with him for a little bit.
We have never talked with him about John's progress but we hope that his interaction with John will lead to more positive outlook from OBs toward children with this syndrome. We know that the wheels of change turn slowly but this may be the start of turning that wheel.
Also, it has been suggested to us that we might consider taking a sample of John's cells and getting a biopsy done. This would tell us whether or not all of John's cells have the 3rd chromosome at 21. This has come up more than once with us and other Dr friends because of the fact that John is so alert, moves so well and that he didn't have any internal issues at birth.
While we are thankful for John's progress and do feel that the Lord has blessed him with good health and it is very exciting for us to think that our son may not be affected in 100% of his cells, reality tells us that having him tested would not change a thing. John is who is and he will become the person he is to become.
Sure, we have many questions as to who John will become and what he will be able to do. But I don't think any test can give you that information. For us, we have found that the nearest answer to that question is to provide him with opportunities to learn and grow.
As his parents, we had always thought that John was progressing well and was born with abnormally good health for a child with Ds, for which we give God the credit and glory, but then again we are biased. So it was good to hear another Dr make such a remark about him.
So for now, we are content with not knowing the outcome of testing. I would like to hear from those of you that have experienced testing. Have any of you encountered this? If so, did you test and did it change anything for you?
Saturday, February 21, 2009
As you know, feeding a baby can be pretty messy. That can sometimes delay parents from starting solids. It seems that food gets everywhere except where it is intended which is in the mouth.
I know that when we first introduced John to solids, he didn't have any idea of what to do with it even though he had shown interest by paying attention to our food. I always dreaded feeding him because I knew that it would end up being more work for me in the end.
Well, after 1 1/2 months of him using the spoon, he has gotten somewhat better at it. He now manages to get more in his mouth (and keep it in) than not. Don't get me wrong, I still have a mess to clean up afterwards, but now the mess in confined to his face. And now thanks to a friend of our loaned us some baby bibs to use. Yes, we use bibs but these bibs are the extra large variety. My kids call them baby tarps.
Now when he gets fed, we don't afterwards have a lot of food stains on his clothes. Thanks Julie.
Now an update on John's fight with sickness. I think I can safely say that his sickness has left him. He has fully regained his appetite for solids which he had lost during his illness. He now would like his solids 3x/day along with his nursing/bottle.
So since he has wanted to increase his eating, we have started working with him on finger foods (cheerios, crackers, biter biscuits, etc.) just so we have more of an option and he has done well with them. At first (about 2 weeks ago), he would just gnaw on them and not really bite them; and now he is able to bite them in two.
So he is making up for lost time and we couldn't be more thankful with the way he is progressing. It has taken a lot of work and commitment from us (sometimes I feel that he is taking all of our energy right now) but I can see that it is paying off.
Sunday, February 15, 2009
First, I would like to thank the readers who have prayed and have spoken words of encouragement while John has gone through his first illness. It has meant a lot to me to hear such encouraging words from others who have been through the same. John is feeling much better today. He is definitely making up for lost time as he just can't seem to eat enough. The positive side is that he is gaining his weight back; the negative side is that he is going through diapers at an alarming rate. Oh well, I would rather have the weight gain.
Now on to my thoughts for the day....
The phrase patience is a virtue has always been a phrase I've heard almost all my life. My parents tried to instill patience into their children and I have always admired people with patience. Working as a Physical Therapist Asst. with people have tested my level of patience such as raising children or being married have. My world has been surrounded by reminders of the need for more patience. So before John, I considered myself to have patience...but John taught me that I needed more as it has required me to learn to have more patience in dealing with a child with a special need.
For example, we have now been feeding John solid food for about a month. It is naturally difficult transitioning an infant from bottle/nipple to spoon anyway, but the transition is made more difficult when your baby continuously thrusts their tongue out as is the case the children with Down syndrome. This doesn't mean that the child cannot learn this new skill; it just means that it will require more patience than was needed with children without Ds. This is something that we have come to understand about teaching John whether it is feeding him solid food or other things.
When we first introduced the spoon to John a month ago, he was interested yet unable to get very much intake. But the sessions persisted as long as he kept showing interest. During that time, it was very discouraging as their seemed to be more disadvantages to feeding him solids than advantages, but we were on a mission and that mission was to teach this little boy how to eat from a spoon. By the time we finished, he and everything he was wearing was a mess.
For me, the time it took to feed him was a little discouraging but I will say that after a month of 2 a day practices with the spoon, things are going much better for him. He loves and has come to expect his solid food 2-3 x/day. He still is not as efficient at it than my other kids were but he is getting it. His appetite has increased so much for solid food that he eats 3/4 jar at one sitting. His favorites are carrots, table applesauce, smashed bananas, and sweet potatoes.
It still takes me more time to feed him than it did my other kids and it is messier but I am learning that if we are going to teach this little boy, we are going to have to slow down and work with him at his pace instead of pushing him to meet our demands.
So for a guy who thought I had a lot of patience, I am learning that I need to have more if I am to be a teacher to this little guy.
Friday, February 13, 2009
John had been doing well earlier this week with just a touch of cough yet having a good appetite. In fact, his appetite for solids have increased greatly over the past 2 weeks while we have seen his desire for breast milk decrease. This is what we expected from our other children at this age but we weren't sure if it would go the same way for John. We are pleased to say that it has...up until a couple of days ago when he refused to drink or eat anything.
He then started coughing a little bit more for which we are still using the inhaler and he became very cranky and discontent. I knew he was hungry by the way he sucked on his hands and my finger but he still refused to swallow any milk and would spit out any solid food that we put in his mouth.
So this afternoon, I took him to check in his ears and sure enough, one of them was infected....and thankfully only one. So for the first time in his young life, at the age of 6 1/2 months, he is taking his first antibiotic. Maybe by the end of the weekend, he will feel like eating again which he really needs and I'm sure wants to catch up as he has lost just shy of 1 pound since this all started a couple of weeks ago.
But I feel that we are out of the woods with his cough. Speaking of cough, even though he had all the symptoms of RSV, he tested negative for the virus which is not totally accurate. It is an antigen test and dependant upon whether or not they get antigen in the vial to test. Anyway, we are glad the worst is behind us. Only one of our others had RSV as a baby and I had forgotten how rough it can be.
Saturday, February 7, 2009
Since having John, our world has turned upside down. It has been quite an adjustment, of which we have not completed, on all of us to care for this little boy whom we have all come to love. But just because we have chosen to accept this little guy into our family and have committed to providing love and care for him doesn't take away the fact that it has been a strain on everyone.
Being new parents to a special needs child means that we are still in the adjustment period. After thinking about this, I'm not sure that there is a time when we will be able to say that we have adjusted to this life. I think that with each new circumstance comes a new adjustment. This past week when John was so sick, we got a taste of the medical fragility of John as opposed to our other children.
Our other 4 children have had to adjust to the fact that Dad and Mom aren't as readily available to them now as we were before John arrived. Sure, they knew that John was going to have Down syndrome and that he would be different and require extra help. But the reality of those words are difficult to see when you are a child.
I have found myself becoming more impatient with them since John. I realize that part of that is that I am stressed and have not fully accepted my new life. But with each new day, I am learning to let go a little bit more and accept that this is my life but I also have to keep going with my other children because they need me just as much as John.
Another stress that child, let alone a child with special needs can bring into the home and has brought into our home is the stress on a marriage. Joy and I have a fairly good marriage with all of the added stresses of our professions and of having 4 children which we had felt like we had overcome a lot of those challenges and had a plan in place to raise our children and still be able to manage our individual careers. And then came John.
John changed all the rules when he came. Joy and I would tackle this head on just like we have done most things in our life. Our plan of attack was for me to stay at home and provide his therapy while she worked as a Pediatrician. Even though we still feel like this is the best option for us and for John, it has come with a price. And usually, the price is relational. I tend to be a real intense person and have built a career on striving to provide better, faster results with my patients than the other therapists I work with. When working with one of my patients, I become so overly focused on my goals, that sometimes I tend to tune out other relevant things. And that is what I have caught myself doing at home.
Since I am home with John 24/7, I have sometimes noticed myself tuning out the other relationships in my life for the sake of making John better as it has always been one of my goals to have the best, most progressive Down syndrome child around. I would often catch myself, and still do at times, doubting Joy's care for him, afraid that she wouldn't work with him on the things that I would or wouldn't push him as I would. So I find myself today, sitting in this house with John just as I have done for the past 6 months devoted to him which there is nothing wrong but I have done so at the expense of ignoring others in my life.
After 6 months, and having a wife who loves me enough to be honest with me, I am beginning to see that some of the sacrifices made for John have not been healthy. I am learning to let go a little and relax. I am learning that to not only keep working with John, but to trust God for his development. Since I believe that He is the One who gave John to me, shouldn't He be trusted to develop him? This perspective may not give me more time with my wife and other children, but it will change my attitude toward them and hopefully make me more pleasant to them.
Children with special needs can take up a lot of time and energy. Let me encourage you not to forget the other relationships in your life. They need your time as well. I am learning that John will be just fine if he doesn't have my undivided attention 8 hours a day. In fact, he will probably become a much more independent child if I didn't provide that for him.
Friday, February 6, 2009
We all are actually. This morning John is still a little congested but alert, smiley and active. Yesterday however wasn't the case for us and scared both Joy and myself.
We had been giving John his breathing treatments every 3-4 hours. Yesterday morning we woke up to an inactive, quiet little boy whose color wasn't good and was obviously working to breathe. By working to breathe, I am talking about being able to see his ribs move in and out and his shoulders rise and fall with every breath. We then gave him another breathing treatment which he didn't respond to very much. We then felt like we had to get him to either the clinic or the ER. The ER wasn't a very appealing choice for us (yes, even Dr's make the ER a last resort) and the clinic was to open in about an hour so we opted to continue nasal suction, breathing treatment and steam until clinic opened. (I might add here that if we had been looking at a couple of hours or more wait time for the clinic to open, we would have gone to the ER - so I am not anti-ER; you just have to weigh your options).
Joy took John to the clinic to meet one of her partners (Joy doesn't see her own kids for medical care unless it is simple). To our surprise, his oxygen level was 97-98% and his ears were clear. So that gave us hope that he was responding more than we thought and renewed our confidence to take him back home and keep doing what we were doing with the added help of an aerosol chamber and an inhaler for us to use when we are out in the car and don't have access to the breathing machine.
I also wanted to say a word about the bulb syringe. I realize the ones you buy in the store are wimpy and aren't efficient at doing the job. The one we use is the same bulb syringe that is used at deliveries at the hospital which are not found on the market. But can usually be purchased through your pediatrician or hospital. This syringe still isn't able to get the deepest phlegm but it gets most of it. We use ours pretty regular during these times, especially before he takes a bottle or nurses.
Also, I wanted to thank each one of you for stopping by to check on John. The blogging community has become such a part of our life and it is good to have communication with people who are or have walked in your shoes. Our little situation may seem trivial to a lot of you but I this situation opened our eyes a little bit more as to what others face on a regular basis and made us a little more empathetic. We feel fortunate and blessed that we have not had the serious issues that I read about on here which makes us hard to relate at times but know that our thoughts and prayers are with you in your endeavor to provide for your little ones.
Wednesday, February 4, 2009
Yes, I am talking about Mr. RSV. It started out as croup last week after colds went through the house. John seemed to be unaffected by all the hacking nose-blowing going on around him and we were taking precaution to keep him away. But that is difficult to do when everyone in the house is blowing virus all over the house. So it finally caught him.
It has affected his sleep a little bit but not drastically. So the rehab side of me and the medical side of mom brought the big guns out and started him on a regiment of steam showers initially but then we finally had to concede that we needed to move to the albuterol which we did. We began those last evening about every 3-4 hours. This has seemed to bring back the smiles and remove the droopiness of the eyes.
The rehab side of dad has been seeing that he gets enough rest along with warm liquids and solids. Don't get me wrong, his appetite is not the same but I felt it important to get something down him even if it was an 1-2 ounces every hour. I have also made sure that he gets a little active time in there or at least sit him up instead of laying him down. Being upright will help prevent the drainage from settling in his little lungs. And light activity helps him to cough which is good although we still have to use the bulb syringe to clear his nose because the poor little guys can't cough strong enough to clear it himself.
He seems a little more perky this morning but definitely not out of the woods. But maybe with this combination of remedies, he will be back to himself soon.
Friday, January 30, 2009
Have we transitioned into a society that is non-accepted and misunderstood. Was I a part of such a world that moved so fast that people with special needs (autism, Ds, CP, etc.) and their parents were viewed as something of an oddity. Unfortunately I believe that I was a part of that world and that that world still exists. But fortunately, God has seen fit to bring me into a world where life operates at a slower pace.
Growing up, I knew kids with special needs and their families and as a Therapist working with special needs kids, I knew the parents and before I had John, I often wondered why these parents seemed to have an attitude of "me v. them". They seemed to operate from a point of view that the world was against them and they had to scream to be heard.
Since John has come into my life, I realize what these parents felt like. It is almost as though you pass through a curtain into an invisible world that is very misunderstood much less tries to be understood. And to worsen matters, the Bureaucrats in charge of both worlds belong to the other side - the side that doesn't care to understand our kids and is quick to label them.
Watching the movie, Radio the other night with my family and being able to see this issue from both sides made me stop and think that we sometimes do live in two different worlds. This movie is based on a true story and the reenactment on screen truly parallels life.
The fact is having John has caused us to change our lifestyle and some of the friendships that we have/had. And sometimes it can be lonely thinking that no one knows or cares to understand of what your life is like. But I have decided that it is all worth the sacrifices made to be able to say that I now live in this world of special needs. For it is not until John came to us that I have truly begun to see the true meaning of life and that it is not about money, houses, cars, jobs, power, etc, but it is about love. I thank the Lord that He has chosen to teach me this lesson. Although the method is difficult, the lesson has and will forever change my life....for the good, I'm sure.
My attitude is not me v. them, but one of pity for those who have not taken the opportunity to see and understand this lesson. And judging from the fact that 9/10 babies with Ds are aborted every year in this country, the opportunities have been offered to many people. You don't know what you are missing...there is another world out there and it is more beautiful and satisfying than the rat-race in which we all feel trapped.
Thursday, January 22, 2009
Yesterday we took John in to weigh him just out of curiosity because we knew that he was feeling heavier and looking pudgier. He weighed 14 lbs. 11 oz and was 24 1/2 inches long. We have been feeding him solids on a daily basis but were real sure how big of a difference on the weight that would make - but evidently, he is gaining from it. We were real pleased with his weight gain.
Speaking of solid foods, we are trying to feed him twice daily #2 baby food. It varies from day to day as to how much he gets or how interested he is but I try to make a habit to offer it to him once in the morning and once in the evening. My goal here is to give him practice with the spoon as much as possible. I also try to schedule these feeding sessions about an hour after he has nursed or taken a bottle. John's preference is the bottle or nursing (when available). So when we try to feed him solid foods when he is real hungry, he gets frustrated quicker with the spoon. But we are still using a normal depth baby spoon to feed him and his menu consists of carrots, sweet potatoes, rice cereal, and mashed up bananas (sometimes).
John continues to progress with his therapy time with Dad. We are currently working on sitting and bearing weight on shoulders in side-sitting. We also do some standing in place to let him bear weight through his ankles - you just have to make sure that their ankles are in a neutral position when they stand (not let them stand on the inside or outside of their feet). We continue to have play time on his back and work on reaching and playing overhead and reaching and playing with his feet. We are finding that the more time he has on his belly, the more he is able to figure out on his own of how to move and reach for those play toys we use to facilitate the movements.
He continues to charm wherever we go. He seems to have his own fan club at church and school that really enjoy holding and talking with him. We have a lady that often keeps him 1 day/week for us in her home. It is very exciting to me to see and hear how she loves John and is very surprised by his abilities to communicate and move. Prior to keeping John, I don't believe she had any knowledge of Down syndrome except maybe some negative things heard from the various forms of media. It really makes me feel good when she gets excited over him. It's like she is surprised that he can do those things. People in general get a real slanted view of Down syndrome; I know that my preconceived ideas were shattered. It makes me wonder that if more people knew the abilities of these children, would there still be the high rate of abortion there is now. That is difficult to say. But I'm so glad that my friend/babysitter enjoys him.
John continues to sleep through the night about 7 hours at a time. This has been such a great help to Joy and I as it is hard enough trying to get to bed on time with the other 4 and then waking up at 6:00 every morning so that we can get ready and have a good breakfast to get out the door on time. So an uninterrupted night of sleep is a blessing and we are thankful.
We are thankful so much for John in every sense. He has really been a content and healthy baby. And to see the way that others (even ones that have had no contact with Down syndrome before) have interacted with him has been a great gift to us. We feel that John is truly teaching everyone that comes in contact with him.
Thank you all for your readership. It encourages me to see those of you who have visited (even if you don't comment). It has always been my goal to be able to encourage and help others that share this journey.
Saturday, January 17, 2009
I have been providing John's physical therapy since birth which gives me great satisfaction for a lot of reasons. Some of which are the bond that we have and I have the satisfaction of teaching him and seeing him learn new things. I often blog about what John and I are working on and his progress which I really enjoy sharing with you all. It gives me a sense of contributing my skills and knowledge which I really miss that part of my job.
Anyway, on one of my posts about the things that John and I are doing, I received a comment from a mom about her child and her feeling of inadequacy in helping that child. Immediately, my heart went out to her and how she must feel at a loss of how to work with her child.
While I understand that not all of us have the same tools and skills of working with children in this fashion, I do not believe that this should be a deterrent from a parent working with their child. There are many things that a parent can provide their children without the formal training of physical therapy. In fact, I believe that the parent should play a vital role in a child's physical therapy for they are with them 24 hours a day/ 7 days a week whereas a Physical Therapist is only with them 2x's/week for 30-45 minutes per session at the most. Not only that, but a parent has a bond with the child that the Therapist will never have and I have worked with people long enough to realize that relationship determines to some extent how much a patient will work with you.
I am not advocating that you go it alone, or go off half cocked without some kind of knowledge as to what you are doing or the goal of treatment. But what I do encourage you as parents do is to take initiative and talk with your Therapist about what you can be doing at home, how to perform the treatment and what are the goals - short term and long term. If you have a Therapist who is not accepting of you getting involved, then maybe you need to find one who is.
As a Therapist, I enjoy educating people on how to rehab themselves when I am not there. Sure, my ego gets in my way at times and I don't educate because I want all the glory and want them to think that I am some kind of miracle worker. But I have learned that that is not in the interest of the patient. One of our jobs, especially with a child who is going to be receiving services long term, is to be a coach to that family or that particular patient. Well, if you think about what a coach does, you will understand that a coach is someone who teaches and supervises.
So I would like to encourage each parent that may feel that your child's physical therapy is better left to the "professionals", take the initiative with your Therapist about how you can get involved in the process. Ask him or her to show you what you can be working on during the days your child has no therapy. Tell them that you want to know what they are doing and why they are doing it and how can I help.
And then as a parent, as someone who loves that child, follow up and do your part. John and I do not have a formal time to do physical therapy. We are performing some kind of physical therapy in everything that we do during the day, whether it is when I am holding him, dancing with him, he is sitting on my lap and I am talking with him, sitting in his Bumbo chair or he is just laying down on his stomach (which we have gotten to the place where he is on his stomach much more than on his back).
Just don't think or let anyone else tell you that you don't have anything to contribute in this area because of your lack of skill or knowledge of the trade. It's not rocket science and it is something that anyone can learn.
And to those of you who are involved in this capacity, good job and keep going. Our children are counting on us as parents. As a parent, I am sure there is no other person who wants that child to excel more than you. Good luck to you.
Thursday, January 15, 2009
Recently I have been thinking about the impact that Governor Sarah Palin had and continues to have on the thinking of society pertaining to individuals with special needs. Politics aside, she was a pioneer for many reasons. Unfortunately, she was ridiculed for many of those reasons. One reason in particular that encouraged me in my journey was her outward and very public love for her son Trig. I can remember that then-Vice Presidential candidate Palin had just been chosen to be on the ticket with John McCain about the time that John was born. Joy and I were still in a state of numbness when everyone kept telling us about Gov. Palin's son. It seemed that most of the time that we turned on the political pundants that consumed the airwaves at that time, there she was sporting her baby Trig for the world to see - almost like it was vogue to have a child with Down syndrome. This peaked our interest in this woman further. Not only the fact that their situation seemed to mirror ours in a lot of ways, we were also interested because of her public acceptance and affection for that child to a world that denies their right to life on a daily basis.
Surely she knew that the public that she would subject her Trig to was not accepting of him. But I like to think that she knew that that is what America needed to see which was that a child with special needs may or may not physically look just like you and me and that a child with special needs can and deserves to be loved and cuddled. Maybe this was part of the reason she was mocked or it could have even been part of the reason her ticket was rejected. But those 6 months that she had the spotlight, she communicated something deeply to some of us with children with Down syndrome and that is that they are people that are deserving of our love and affection. I might add that after having John in my life for 6 months, all of us in this house agree with her that it is vogue to have a baby with Down syndrome. We just call him our social baby because he loves life and loves people.
Maybe Gov. Palin will be back or maybe she won't. But she gave America a message that we all needed to hear during those months. And the message that I received was that children with Down syndrome should not be put on the shelf and forgotten. They are living, breathing individuals that are deserving of our time, love and affection. Some may criticize her for what she did with parading Trig in front of the masses, but I applaud her for her stand. And for that, she and Trig have encouraged me and my family.
Saturday, January 10, 2009
John continues to do well. He has had a slight bit of upset stomach this week for a couple of days which made him a little cranky but other than that he has been pretty healthy.
His therapies include laying on his back and working on reaching over his head to play with hanging toys. He tends to have a bit of trouble with this. It's not that he can't move his shoulders but the weakness of the muscle prohibits him from holding his hand up for prolonged periods of time. So I use hanging toys and my hands to work with him in this area. I have noticed him making progress in playing overhead but only for a brief 2 or 3 seconds. So we start there and we are building upon what we have.
We then flip over on his stomach. But we do it by rotating his hips which allows him to rotate his trunk so that he is on his stomach. When he gets on his stomach, I allow him to get his elbows under him and raise himself up. Over the past 2 weeks, he has started coming up on hands. This is pretty much what I have been focused on for the past month because his shoulder girdle was and still remains weaker than what it should be for crawling, for reaching out with one hand while on his stomach, for transitioning from side lying to sitting, and for good posture. So we will continue to work on his shoulders. My goal for him at this stage is to be able to reach out with one hand while putting his weight on one shoulder.
After we work with him on his stomach which he has grown to tolerate (the poor boy has had no choice with a Therapist as a Dad) this position for quite a while. We move to a sitting position where we are working on his sitting skills. I sit behind him and place my hands in his hands and let him feel what his body is doing. I can tell that he is working to keep his balance. He still wobbles quite a bit but I let him wobble as much as I can without letting him fall. I believe this will help those abdominals and back muscles to kick in and help him stay upright.
John loves to stand up so I give him a chance to stand. While it is not a short-term goal of mine for him to walk, I started standing him on his feet while on my lap just to give him some weight-bearing through his hips (I placed my hands around his chest while doing this). Well, now he wants to do this all the time so he is now to the point where he can stand on the floor with my hand placement at his hips. He loves this and would rather do this than to sit. But being the Therapist that I am, I do not like to nor do I recommend skipping steps with a child whose muscles do not respond normally (flaccid, spastic, muscle tone problems, etc.)
So as I speak of where John is in his therapy, there is a progression that we have followed and it started with the baby massage we did his first day of life (which we still do BTW).
This is where we are in life. It has been a blessing for me to have my other children in school because I spend all my day with John. It is difficult for me some days and I get to missing my old life of going to work, etc. But when I stop to think about what would happen to John if I went back to work, I wouldn't have it any other way. And when my wife comes home talking about all of the RSV and other illnesses she sees in clinic, she is very glad that we have this opportunity to keep him home.
Tuesday, January 6, 2009
John is now five months and 1 week and weighs 13.5 lbs. We started him on jar baby food #2. Fist starting out, John had trouble knowing what to do with his tongue as do all babies in making this transition. He would thrust his tongue out, therefore getting most of the food on us and himself. After working with him on a daily basis, he seems to be getting it. Now when we feed him, the tongue thrusts are fewer and he opens wide when the food nears his mouth. John sits in his bumbo chair at the table with us for meal times so he has noticed food for the past 3-4 weeks.
Normally, children with Down syndrome I think have more of an issue with transitioning from bottle to spoon because of the weak muscles in the tongue. This is one reason that we have chosen to keep John on the "slow flow" nipple for bottle feeds. The "slow flow" nipple makes him work harder in order to suck, therefore strengthening the tongue and jaw muscles. At this point in time, we are feeding John baby food 2x daily and he is guzzling anywhere from 26-30 oz./day. That sounds like a lot but when you calculate the caloric intake needed for good growth, it is probably minimal. Which leads me to my next topic - how many calories should my baby be getting.
Usually for proper growth a baby requires 100 - 120 calories/kg. To calculate your babies weight in kg., you need to divide your babies weight in lbs. by 2.2 since there are 2.2 lbs to 1 kg. On average, there is about 20 calories per ounce of formula with there being more in breast milk depending on the fattiness.
Working to meet benchmarks are usually not very important to us as each child is different and develops differently. But good caloric intake does matter to us as we feel that John needs all the bodily growth that we can give him.