Saturday, October 18, 2008

When Your Toddler Doesn't Toddle

Fletcher has been diagnosed with Cerebral Palsy due to a brain injury he sustained as a result of his extreme prematurity. I still plan to back up and fill in some journal entries from his time in the NICU, and I will go into more detail in those posts.

Before Fletcher's diagnosis, pretty much my only exposure to a person with CP was Blair's cousin on the sitcom Facts of Life. In other words, nearly none. It has been a steep learning curve, and I still have much to learn, but learning about cerebral palsy and how it affects Fletcher has been my focus for the majority of the last year. Cerebral Palsy is hard to classify because it manifests differently in every person. The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don’t worsen over time. I found that definition, along with a good basic explanation here.

For the last, 21 months, beginning mere weeks after Fletcher came home from the NICU, he has been doing what many consider "traditional" therapy to combat the effects of his cerebral palsy. He began with occupational therapy (OT) twice a month. After a few months OT was increased to weekly and physical therapy (PT) was added. Over time new therapies have been added and the frequency of others increased. Currently Fletcher has PT two times a week, OT once a week, vision therapy/early childhood special education once a week, aquatic therapy once a week, speech therapy once a month (increasing soon to two times a month) and sees a nutritionist once a month. Luckily for us all of these programs are paid for by our local early intervention program, Infant Toddler Services of Johnson County (see the link in the right hand sidebar for more info), and all but the aquatic therapy is provide in our own home.

We have seen Fletcher make steady progress with these therapies, but, for Fletcher, I feel like we need to be doing so much more. And there are plenty of alternative therapies out there. Problem is finding one that is right for your child, as each kid can respond differently to a particular therapy. Another CP momma, or should I say supermomma, seriously, this woman is an incredible mom and advocate for her son (and believe me, advocate is one of the biggest roles you play as a parent to a child with special needs), put together this therapy approach that illustrates all of the options her son has tried and others that she is researching. It is not an easy choice as it would be impossible to do them all because these alternative therapies are not covered by insurance, are not cheap, and often are quite time consuming with no guaranteed results. You can research all you want, but at some point you have to take a leap of faith.

I have taken my first leap and tomorrow begin a week-long program learning the basics of ABR.

1 comment:

Citizen Kane said...

Hi. My cousin's little one has CP very very badly. She's just finished reading a book which she says helped her a lot. I've looked up the reference for it here .

hope this helps.