So... Oliver's evaluation report arrived yesterday. While I was bracing myself for it, it was still hard to digest and process. The therapists unanimously evaluated him as 'delayed' on all fronts. He was even graded with letter grades in one section of the report, and received several 'Fs'. While Dave and I have known for a while now that he was behind in several areas (I mean, this is our second go-round as parents, and what parents don't compare the second experience to the first), it was hard to read the report with his name at the top and 'delayed' in every evaluation, gross motor, fine motor, cognition, speech and language and feeding. To read that he could be in danger of failure to thrive if he doesn't start eating soon, as breast milk will no longer meet his needs when he becomes more active. To read he is weak. To read he isn't playing like a one year-old should. To read he doesn't understand simple commands, or mimic back sounds or imitate signs. It's true. All of it is true.
It's also difficult to not assign blame to myself. I am the one that is with him 24 hours a day, I am the one that spends the most time with him, I am the one, I am the one, I am the one. And as much as I would like to figure out a cause, or assign blame, or really determine what we did and didn't do in order to figure out how to 'fix' this, more than likely this is just Oliver, the lot he was cast, and now we move forward from here.
Our big meeting is May 20th, where we go in and discuss his challenges, set goals, and find out what services the state is willing to pay for, and where we develop our plan. And for those people that know me, I am a woman that likes to set goals, make a plan, and move forward. We find out our therapy schedule, and we will know what we are looking at for the next 6 months. Then we go in and review his progress and make a new plan.
Tuesday we head to NYU Hospital's Swallow Center to have a swallow assessment done and to make a plan to start behavioral feeding therapy to get this boy interested in some solid foods beyond just a couple of rice puffs, a few crumbs of bread and miniscule amounts of dried fruit. His birthday party is next weekend, and realistically he won't even eat the dairy free / soy free cupcakes that I plan to make... because he won't be interested.
As his first birthday approaches, I have found myself willing him to meet any major milestone, just to send up a flare that he is okay and making progress - crawl, move to all fours, clap, wave, ANYTHING. As if he could sense my increasing anxiety and panic, he has made some major progress in his gross-motor skills in the last week or so. He has learned to sit up from a prone position (HUGE), has learned how to roll from back to front, not just front to back, and is correcting himself more consistently when he leans too far to one side and loses his balance. Additionally, he seems to be understanding a little more lately. Day before yesterday when I asked him if he wanted to nurse, he grabbed my shirt and started pulling at it. We are moving forward, just not according to any milestone chart. We are moving forward at Oliver's pace.
So that's it. We find out our plan in the next few weeks, a plan of action, a plan of therapy, and we will see what our lives will look like for the next 6 months. And hopefully Oliver's progress will begin to move forward at a more expedited pace and he will come up to curve. We may not know for years what it is that we are dealing with, or even if there is any big picture challenge we are facing. For now, he continues to be our perfect little boy, my little love, and we will work to get him the help he needs to continue to grow, learn and thrive. And remind me when he is crawling all over my apartment and destroying our home that I wished for him to become mobile!
We are cheering for you!! Oliver is lucky to have you guys -such great, supportive parents.ReplyDelete
Oliver is in good hands with the two of you, my friend. You know what to look for, are making a plan (yes, it may change, but a plan nonetheless), and love him for who he is.ReplyDelete
I'm cheering you on too!
Ahhhhh! And then this made me cry! I love how you love your cute little baby! "We are moving forward at Oliver's pace." I love the respect you give him. It's perfection. Good! I wish all the parents I know were just like you.ReplyDelete