Friday, November 4, 2011

Hoop Jumping

After spending 5 weeks in the NICU, Dean came home on various monitors. After a great sleep study at 9 weeks old, we met with a pulmonologist at Children's Hospital Boston who said we could take him off all those monitors. Phew.

We talked about Dean's desats during the night (yes, he did it back then too, but then they stopped after he started GH) and I asked how many other newborns probably do the same thing at night but that we don't know because they don't come home on monitors. He said, "You know, you're probably right. Unfortunately, once you've been flagged for special attention, you have more hoops to jump through than others do." In other words, Dean had to go through all this surveillance and pass a sleep study before he could be like any other baby at night. Others just get to be... babies.

Fast forward. Dean had his second session with his new speech pathologist through Early Intervention today. He wowed her and talked a ton during their first session, but today was all about avoidance.

Dean is no stranger to avoidance. He's done it before, particularly a lot during physical therapy before he learned to walk. I think because it was so very tough for him, avoidance was a lot easier than was being asked to work on the skill directly by an adult. A few times during PT, Dean was so avoidant that he would actually FALL ASLEEP. Then when his PT left, he "magically" got a boost of energy and would resume his desired activity. Unamusing. Now that gross motor activities are a little easier for Dean, he avoids PT much less. Plus, his PT decided not to let his avoidance deter her and got into a routine with Dean that really seems to work with him.

If you've ever spent some time with a 2-year-old, they're not always the most compliant little creatures. They're not all that interested in what you are wishing for them and usually have a determined little agenda of their own. I know, the nerve.

When you're a 2-year-old with special needs, it seems that the "2-year-old" part is often forgotten. Failure to complete a problem-solving task such as one during Dean's school evaluation where he had to get a block behind a clear container is seen as evidence of cognitive delay. NOT evidence of a 2-year-old who just didn't give a flip about what you were asking him to do.

So today Dean avoided the SLP to go pursue one of his favorite activities: looking at books. He loves to flip through the pages and go from book to book to book. His SLP asked me a series of questions to try to get me to say that Dean just doesn't have the attention span to do anything for a meaningful amount of time. Really, that's not the case. He has a great attention span for activities he WANTS to do. Granted, he needs to learn more tolerance for adult-directed activities that aren't his favorite, but it's not because he *can't.* She responded that she even tried not to be as demanding sometimes and he still avoided her. Umm, he knows who you are and why you're here. The kid wasn't born yesterday. He CAN attend to activities, he just doesn't want to. Not good, but that's the situation.

The upside of this is that special monitoring and attention might get Dean certain services or whatever that he might not otherwise get. But I wish for him that he would also be given the benefit of the doubt sometimes and not have to jump through extra hoops just to be considered as others his age would be. Not sure what else to say other than that, just thinking through my fingers. Would love to hear your thoughts!


Elizabeth Phillips said...

Obviously, there are differences, but when Henry was in Speech therapy, he would do everything but what the therapist wanted. At first we were with an education specialist and she often got frustrated. I was like, um, he's two and he doesn't care about that toy, he sees the trains over there. Then, when we switched therapists, the new one said, "Hey, how about we do this in the high chair so he can't get away and I'll try to bring toys he's not used to playing with." Big shock that he grew to love that therapist! We set up shop at our kitchen island. Could you suggest doing that so he can't get away? We would even clear away all the other toys the night before speech just to help keep him focused. You're absolutely correct, 2 yr olds are not known for their attention spans. When I taught they told me it was a minute per year.

Kimberly Bureau said...

Calleigh is the same way she will listen if she wants to our therapists have to make her think doing something was her idea otherwise she wont do it and even then sometimes she still wont do it because shes 2 =)

Ali Foley Shenk said...

Glad to hear we're not alone.

Elizabeth, I asked her if maybe being in a different room would be better and she initially balked at it. I'm wounding if after her frustration this time, she would be up for it again. She did mention maybe sitting down in a chair at a table and see if that was something he would do. I'm going to mention it again...

Jen Fitz-Roy said...

This post totally reminds me of the PT who actually kept trying to get my parents to have me diagnosed with ADHD in elementary school because I wouldn't pay attention to her or follow her directions. I was wonderfully happy and exhibited perfect behavior and attention sitting through lessons and activities in class all day, so my parents were like, " She just doesn't like you, she doesn't like what you're doing, she doesn't like being singled out, and she has no interest in paying attention or cooperating because she finds this meaningless." All of my labels relating to my spina bifida and gross motor skills were accounted for, but somehow the fact that I was five, six, or seven years old was completely glossed over. I worked better with certain therapists than others and I had different issues with not wanting to cooperate at every developmental level - it constantly changed and I kept my parents and therapists guessing as to what was going on with me psychologically that was the barrier to my not cooperating or paying attention. I was a sweetheart and the most well-behaved child in the class, but the second I was in school PT or school evaluations/testing or private PT at the rehab center, I was a terror. Attention is going to be a problem through the ages - just to give you something to look forward to! :-) It's sad to me when I talk to parents and realize that some things haven't changed, but when I see things that have improved since I was growing up, like more sensitivity to or awareness of certain things, it's so encouraging.

Ali Foley Shenk said...

Jen, I always appreciate your comments because you have such wisdom and the experience to back it up. Yes, you nailed it. How easily something or someone can be labeled a "problem" just because they're not performing in a particular context. I'm glad I'm noticing it now because I can be on the lookout for this as Dean gets older (or any of my kids, really, especially being boys!). Thank you.