Yesterday was Oliver's 11 month birthday. And he isn't eating. He will take a couple of crumbs of bagel, a couple of dried blueberries and that's all she wrote. For all intents and purposes, he isn't eating. He is still getting about 99% of his calories from nursing. After the swallow assessment and the endoscopy last month, we were directed to NYC's Early Intervention program to see if he would qualify for behavioral feeding therapy services. In order to qualify, he had to have a delay in at least one other area, so we have had a troupe of therapists parading through our home in the last two weeks. We've been assigned a case worker, and he's been assessed by a physical therapist, an occupational therapist, a speech and language therapist, and a teacher has done a general assessment and parent interview.
So here's where we freak out. Not only has he qualified for the feeding therapy, but it turns out he is delayed on ALL fronts - gross and fine motor skills, receptive and expressive language AND feeding, and he is also being recommended for play therapy. His final assessment took place yesterday - the most important one, the feeding assessment - and now we just hurry up and wait. Our big meeting with the Department of Health and Hygiene (yes, that's what the department is called... how could I make this stuff up?) happens May 20th, but time is of the essence. I go back to work in 4 1/2 months now, and each day that he doesn't eat is another day closer to the day I return to the classroom... and take the food source with me.
All sorts of irrational thoughts are flooding my brain and making me crazy. Have I failed him in some way? What have I done / not done with Oliver that I did / didn't do for Julia? Could I have prevented these delays in some way? What can we do differently now? What is causing these delays? Will he always be delayed, or will he at some point catch up and be on par with his peers? What's the long term prognosis here?
Of course there are the logistical questions too - seriously, FIVE therapists? What is our life going to look like? How will I parent Julia in any kind of an enriching way when our entire life is taken over by Oliver's therapy schedule? And by the same token, is Oliver's entire life going to be therapy? What about tumbling, and music, and swimming and all the fun things Julia got to do when she was a toddler, or just a trip to the playground? What about downtime? While we can't afford for me NOT to go back to work in the fall, how CAN we afford for me to go back to work? Clearly our son needs his Mama to be home?
I look at my boy and know he is a beautiful, happy little boy. I know he is bright and curious because I see the sparkle in his eyes. However, I an consumed by worry... what is going on in his little head and in his little body? And what can I do? Once again, I remind myself to breeeeeeeeeeeaaaaaaattttttthhhhhheeeeeee, and take this one step at a time. But then the crazy seeps back in, the panic starts to rise in my chest, and I leap ahead 53 steps...
I wish I had words of comfort. I know your stressed and I hope it all works out. Ithank god you are nursing. I'm entering my last trimester at 37 and scared to death that something is "wrong" and hope it will all be ok. Parenting is so overwelming when it comes to health and well being. It is beyond our fixing. One thing I do know about is goat milk....it's what we do on after work. We milk 20 goats and make cheese and sell the milk at the market. I don't know what NY laws are but goat milk is very similar to breastmilk. The fats and proteins are more easily digested over cow. It's not the breast but it can be very nourishing. I weaned my kids at 14 months straight to goat milk and they are healthy happy and thriving.ReplyDelete
Hey Dot! You know I did early childhood for a long time. I can tell you it's a lot to take in all at once. I also think you might feel better after your big meeting. Then you can hear the official results and will get an idea of how big or small the delays are. There's a good chance that they are small delays and they will only recommend a short time for interventions. And the fact that you are starting early will really help Oliver in the long run. I'm holding you guys in the light. Good luck! carrieReplyDelete
Know that I am thinking of you & Oliver, holding you in the light, & sending all the positive energy I have your way.