A Daddy's Boy!

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.

Siblings

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.
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Juli, our 9 year old, wrote a poem about John for a 3rd grade class assignment that I thought I would re-write here:

My brother John
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.

                        -Juli Hill

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.

Yo-Baby!

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.

Pointers For Physical Therapy

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.

The Role of PT in the Special Needs Child

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.

It's A Matter Of The Heart

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

An Update and a Word On Orthotics

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.
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As for the SPIO trunk support, I will give my thoughts in the next post.
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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.

Question and Answer

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?).

John's 6 Month Check-up

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.

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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 %)

All are measured using the Down syndrome chart

He also got 3 more of his vaccines.

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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.

It's A Small World

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.