January 27, 2010
So my former 30-weeker was recently tested by the school in order to get a sense of her Individualized Education Plan (IEP) eligibility and yesterday I met with the School Psychologist to go over the results. The school definitely sees her on the spectrum of autism, basically Asperger’s Spectrum Disorder. It was a shock and I had a hard time with this at first, mainly because I was mentally kicking myself for not seeing the bigger picture of all of these different facets of my own daughter. How did I not know? All of the pieces of the “puzzle” were right in front of me! Then the Psychologist kindly reminded me that the signs of ASD are subtle and that Becky’s high IQ has a lot to do with this and her ability to adapt and compensate . . . and basically has fooled a lot of people.
My Becky Girl . . . I love her dearly and I will continue to be her dedicated advocate so that she not only thrives but also continues to truly blossom. All that we have done so far has gotten her where she is and though there is more work to do . . . I know she is capable of great things.
Has anyone out there had a similar experience in diagnosis of their preemie? I would love to hear from you.
January 21, 2010
Never have I missed my “little man” more nor the rest of all our kids than being away from them for nearly 20 days of shooting for my latest feature, “Elena Undone.” While I’ve been set-bound (and having a glorious time, I might add) — Deb, my dear biz partner, has been keeping www.PreemieWorld.com running smoothly and preparing for the launch of our new book as well as our Baby Safe Pack which I’m very excited about. Since Nicholas uses Hallcrest’s Thermostrips I’m really thrilled about getting a special PreemieWorld version of these into the hands of other parents who simply want to keep their children safe from spiking temps and more.
Probably one of the greatest comments I got during shooting, is that for the most part I look like a haggard graying mess – (2-3 hours of sleep a night will do that to a girl!) — And I came out of Nicholas’s room one afternoon (we shot at our home the first 8 days — never again!) and my producer, Jane Clark, commented, “My God, what just happened to you? You’re radiant — there’s a softness in your face and it’s the first time I’ve seen you look stress free this entire shoot.” I remarked, “I just saw Nicholas.”
If there ever was a tonic, it is truly my “little man” — He simply fills me up, rejuvenates me and makes me always, ALWAYS realize what’s important.
Now off to editing!! Hope everyone’s keeping warm this crazy winter season.
January 20, 2010
There is nothing cooler than a Proud Preemie Dad Helping out others in the preemie community. We are all, as you know, one amazing family that truly understand and knows the challenges involved with having a baby in the NICU or SCBU and taking them home and trying as best as possible, to have a “normal” life.
Please pass the love onto Preemie Dad Nigel and his blog and his upcoming event for preemies as he cycles from Cambridge to Paris (ooooo la la!) on behalf of the preemie UK charity, Bliss:
Comments welcome – thanks for being there!
January 15, 2010
The NICU gives you an education not only in parenting but also in general medical issues as well. I learned this during both of my parents’ hospital stays in recent weeks. It was totally bizarre to hear the word “bradycardia” from a doctor and even more strange to realize that I knew what it meant and was able to explain it to my confused family member. The doctor even gave me a puzzled look and I explained simply, “My daughter was in the NICU and had bradycardia episodes.” Since when did I become a medical professional? Never. But I am now an informed consumer of healthcare and that is as good as gold.
Having a baby in the NICU gives preemie parents more of an education than one would at first imagine. Preemies have so many immature organs that they suffer from a variety of issues as they struggle to survive and thrive. Because of this parents get a huge amount of knowledge that they would otherwise not have a clue about in a full-term baby scenario.
Having such an understanding of medical matters, though in laymen’s terms for sure, is a gift. I know that in my own circumstances it helps me to take control of the medical conversations on behalf of my family members and myself with confidence and to know how to ask questions about conditions and more.