James' new tricks

Thanks goodness for my iphone video feature! I have been utilizing it a lot lately, capturing the latest new tricks that James  loves showing off.  He is a music lover and gets a kick out of singing songs with motions such as "wheels on the bus", "happy and you know it", and "itsy bitsy spider".  We often sing while he swings on our porch.  


James has become quite the communicator. I mean he definitely knows what he wants and doesn't want and is adept at letting us know the difference. He uses a mix of sign language, words, and violent shaking of his head yes or no.  James is very happy when he successfully gets his point across and I feel that this is a big accomplishment for all of us. His special instructor introduced me to the writings of speech specialist, Down Syndrome parent, and author, James McDonald, about speech development in children. I think what he has to say is critical to not only the development of speech but also a factor in good parent/child relationships.  His article on speech development stresses: having frequent play interactions with your child (being a play therapist, I understand the importance of this), he says "be your child's favorite toy; also help teach your child about taking turns by practicing this with him while playing and being able to WAIT; and progressive matching (doing and saying what your child what your child is doing and saying and then add a small step more). For those interested in knowing more, his article can be downloaded at: http://jamesdmacdonald.org/Articles/FDown/FromIsolationtoConversati.html

James has also become quite independent lately, especially since he is walking more now.  He watches everything big sister does and wants to do it too. I am coaching Lila's soccer team (we are the Queens, which is fitting) and James loves to watch our practices.  He has been walking around the house kicking balls the last few days.  He is very proud of himself when he is able to kick it.  It amazes me how much he has changed and how "big" he has become just over the last few weeks.  And of course we have a jubilant celebration at each new step of his progress. 

Nothing left to do but smile smile smile...

Today as I write this at the beginning of 2011 I am smiling. Truly smiling. Smiling with every part of my being. I cannot say the same was true this time last year.  At the beginning of 2010 I was  filled with anxiety. James was just 3 months old and we had recently begun 3 of his therapies. I was trying to prepare myself for the onslaught of doctor appointments that are deemed necessary for infants with Down Syndrome: pediatric cardiologist, opthamologist, ENT, hearing tests, thyroid tests, and others. I felt that the stakes were stacked against us. So many children with Down Syndrome have some type of health issue, and I was fearful for James. One by one we we went through the list with anxiety overcoming me at the beginning of each appointment. But so far our little man has been very healthy. Thank you, God!  Ever since Lila was tiny I have prayed that she (and now James) would be happy, healthy, and secure. I believe that my prayers have been answered. I know that we will have unseen difficulties throughout life, just like everyone else, but at the start of this year I am feeling happy and blessed. I welcome 2011 with open arms. Happy New Year!


Bradley and I sent out an e-Christmas card this year and I am putting the link below because it shows pictures of our family during 2010.


view our Christmas card here

Sure Steps

James goes to physical therapy once a week. Sally, his physical therapist is absolutely wonderful! I am not sure what we would do without her. Not only is she intelligent and up-to-date on all the latest information relevant to motor development, but she is also compassionate and really cares about her kid clients. Sally informed us a few weeks ago about how Sure Step orthotic braces could help James develop proper movement patterns. These braces are unrestrictive and provide great ankle support for children with low muscle tone. If your child has low muscle tone and is starting to pull up and take steps you may want to talk to your physical therapist or orthotist about Sure Steps. Here are some pics of James sporting his new braces.

Sensorimotor themes

Last week I went to a workshop on Sensorimotor issues in children which was presented by Jenny Clark, OTR,/L, BCP.  I got some great information that I would like to share with parents. As infants we learn about our surroundings through sensory experiences. Therefore, sensory experiences are very important to our development. Sensory Integration Theory is a framework of how our brains process sensations and how this affects our motor skills, emotional responses, attention span, and behavior. Here are two websites that give the lowdown on sensory processing and how it can affect development:

www.SPDconnection.com

www.spdfoundation.net

Welcome

So here it goes, my first post.  I have had this blog for about 2 months, but hesitated to start. Wow, I think this is going to be very exciting! Welcome to my family. Where to start? First of all, my name is Jenny and I am wife to wonderful Bradley and mother to Lila (3 years) and James (14 months). Second, I am  licensed professional counselor and was operating a private practice, primarily working with children, until September of last year when my son was born. I decided to put my practice on hold for a while to attend to the needs of my two beautiful children. I realize that they are only young once and I want to enjoy them while they still want "mommy".  It is a busy, joyous life I am leading and I would not change it for the world. "Mommy, Mommy, Mommy!!... I hear that a lot from my precocious little princess or dog or reindeer, (which is quite often this Christmas season). Lila is definitely in the fantasy stage right now, which is a great stage, and a lot of fun when I can remember which part I am supposed to play in her little continuous drama.  James is curious and sweet, and thinks his big sister is a constant hoot! I am just afraid he is not going to know what her real name is because it is always changing from sleeping beauty, to Lady (lady & the tramp), to Rudolph. I can't wait to see what name he chooses for her.

James was diagnosed with Trisomy 21, otherwise known as Down Syndrome, a week after he was born. I believe that this was definitely a changing point in my life, our entire family's existence.  I almost feel like my life has been split in two parts. Life before finding out about James' diagnosis, and life since. The first year of James' life has been quite an experience. Grieving the loss of the boy I had expected, learning about what this diagnosis might mean, figuring out how to manage the different therapies that James needs, and most of all loving him with a mighty fierce "momma bear's" love that makes me confident that I can face all challenges ahead like a steamroller.  I have learned to be a teacher, an advocate, and possibly an even better counselor through the experiences I have had this year. I am thankful for the loving support that I have received from my family and friends. I am overjoyed at the amount of love I have felt from so many. I am glad to have new friends in my life.  People who have stepped up during a time when I needed them, and friendships I have made particularly due to James diagnosis. 

I hope to use this blogspot as a place to share my experiences for my own benefit, as well as occasionally posting helpful information for families with special needs.  Welcome to Raynerworld!