Thursday, October 25, 2007

Just the Two of Us

Right now Robbie is probably sipping a margarita on a private beach at his resort in Puerto Rico. The lucky bastard had to go down there for work and since the company isn’t near any decent towns, they are footing the bill for him to stay on a resort for the week. And here I am, eating a bagged salad and smelling like baby puke. Oh, the inhumanity!!

While we have many fun pictures to share as a way of showing what else we’ve been up to this past month, I am too tired, busy and frankly technologically impaired to load and compress the pictures myself. So while I await my darling’s return, I will just share a couple thoughts. I know, everyone has been begging “Baby Daddy” to share his wit again, but since he’s soaking up the sun, you get me instead.

First, we finally got Emerson going with his Early Intervention therapy. We started this process months ago, but the school district was having some…let’s call it “communication issues” among the various people involved, so we fell through the cracks. After making some calls, filling and refilling out paperwork, we got a formal evaluation at last.

It was sort of an intimidating process – Emerson sat in the middle of this playroom while a speech therapist, occupational therapist, physical therapist and coordinator (his visual therapist did hers separately) all interacted with him, observed him, observed me, and asked me questions. When they asked about an area that I knew he was behind in, it brought up a mix of emotions. On the one hand, it was good for me to talk about his delays as much as possible to ensure he gets the help he needs. But on the other hand, I couldn’t help but feel a little defensive and like a flunkie parent.

Don’t get me wrong, they were incredibly nice and helpful people, but when you get lectures about “tummy time” and people scribbling notes about everything you and your baby say and do, it can be disconcerting. I assume his delays are due to the albinism since many other parents of children with albinism have had similar struggles, but since we have no other non-albinism children of our own to compare to, I can’t help but wonder how much of it could be due to our parenting.

Add to the evaluation situation the fact that we were in a brightly lit room that bothered Emerson’s eyes, he was tired and close to nap time, and he is going through stranger anxiety - and you have a recipe for a recalcitrant baby who scrambled over to comfort nurse every five minutes. When we got the final report back at our home visit yesterday, I was surprised to find even the nursing sessions noted in each therapist’s report. Our coordinator explained that it wasn’t an admonishment, just a note to make sure I was “pushing” his tolerance further and further during future sessions.

I was also surprised that the delays they noted went even beyond what I had observed. The coordinator was quick to note that he hadn’t fallen extremely far back yet, but it was enough to warrant therapy. I agree and that is why I contacted them in the first place, but it was still hard to see it all in print.

Anyway, Emerson has already been making progress on his own lately, so I think the regular therapy sessions starting next week will give him a real boost. I think part of the reason I am feeling so vulnerable about it right now is that I just got back from another "playdate" with a fellow mom and her baby. I love these dates - it's a chance for me to connect with my friends, vent about parenting, and I think it's good for Emerson to be around other children. But it's always a little hard to see how our friends' kids are transforming into little toddlers while Emerson still seems so baby-ish. I know he'll catch up in no time, but it's hard to watch him getting left behind, trampled and otherwise manhandled by his more advanced compadres.

On a happier front, the Director of Religious Education at my church asked me to share one of my blogs last Sunday as part of a service on inclusiveness and tolerance. It was great to have the opportunity to educate people and I got a nice response. More than anything, however, I valued what I learned from the other people who spoke. We often think of tolerance about the way people look, but we rarely think about behavior and mental issues. One woman spoke about people's reactions to her two children, one with ADHD and the other with Asperger’s. Another woman talked about her son who was diagnosed with bipolar disorder as a teenager and how the acceptance he received from people at church during that time likely saved his life.

After all the speakers were done, the DRE gave a sermon on the topic. One of the things that spoke to me the most was a quote to the effect that we need to give parents a break and not always assume their children’s difficulties are due to poor parenting skills. It reminded me that however fragile and inadequate I feel as a parent from time to time, I still find myself judging other parents. I roll my eyes at the kid with out of control behavior and I wonder how I can avoid making the same mistake that his parents made. But in reality the parents could’ve done everything right and yet something else - something medical or psychological could be going on.

So here’s my parting bit of wisdom for the day. A developmental psychology textbook I’m reading for school right now noted that our Western culture (especially America) is unique for its strong emphasis on the role parents play in their children’s development. We assume if something is wrong with the child, the parents are to blame. Other cultures may see a parental role, but they also see how much environment, society, medical health and inherent personality play. It’s something to think about. Sure there are parents who screw their kids up, and I am undoubtedly going to be the subject of Emerson’s therapy sessions one day, but we all deserve the benefit of the doubt once in a while.

1 comment:

  1. Hi,
    I'm Lee Laughlin an adult with albinism and mother to 2 kids with albinism ages 7 and 3.
    EI can be a daunting process. So much paperwork and so many questions. Even having the condition I found my self stymied when the therapists would ask "What are your goals for the next X months". Uh Gee, I don't really know what a 8 month old is supposed to be doing.

    One important thing to remember is that while you may not be an expert in albinism or feel like a parenting expert (trust me you know more than you think), you are and expert on Emmerson and that is very important. You are with him the most and that is valuable information to the EI team.

    Have you heard of NOAH? Please visit if you haven't.

    Please feel free to email me if you have any questions.