Raising Awareness

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.

The Physical Therapy Factor

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.

The Happenings of John

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.