Getting past the labels.

I can’t thank you enough for the amazingly supportive, thoughtful comments on my last post, regarding our EI evaluation. You all made really valid points, points that kind of brought me back to Earth when my head was starting to drift. Again, my feelings and thoughts are kind of all over the place tonight.

Today, my husband and I met with the evaluators from my state’s Birth to 3 program and set up an IFSP for B. Some of you mentioned that this document, different from an IEP, would really reflect the desires of the parents and that we had complete control over it. You were right. We were asked what WE wanted to see change, and rate those areas in terms of importance. Doing that allowed them to choose which services would be provided and how frequently. I found the whole two hour meeting extremely helpful, precise, and what I needed to proceed with this whole process. I think I’m starting to understand exactly how this is going to work, and that makes me feel better.

But. I’m still not past the labels. There’s no label for B – yet. The evaluators do believe that if he was to take the Autism evaluation right now, he would qualify. AKA – he is demonstrating behaviors and abilities that could be on the spectrum. Specifically, his lack of communication with us, sensory sensitivities, and a few other small things (lack of creative play, lack of interest in other children), sounds like Autism to them. I’m having a hard time wording my thoughts on this. There’s nothing – wrong with Autism. I’m just having a hard time right now taking what was so great about my son and putting it above this looming possibility. Which is crazy – I know. He’s a wonderful child. He’s silly, he’s affectionate and loves to snuggle, he’s enthusiastic to learn.

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He’s SMART. I’ve spent so many months in awe of what both of my twins know and how quickly they soak up information. My nanny and I are constantly in talks of how to challenge them next, because they know and can identify, say, and apply all those things that kids this age might know. And then some. And I’ve spent the last few months pursuing my new hobby of finding educational activities that will teach them new things. But now I’m feeling like I need/want to spend time finding activities that will help B “get through” whatever it is he’s struggling with. When I know that’s not how this works.

At the meeting today I came to the realization that B doesn’t know how to play. I know he loves to play, but to him, playing is work. Work is playing. Sorting, stacking, puzzles, sweeping the floor, scooping and pouring, pushing cars, flash cards – those are what he loves. The other day he found a flash card with a picture of a brown square on it and he dug around in the play food for a brown square waffle. He brought them to me, beaming. I loved how he made that connection. And now every time we get those cards out, you can guess which card he searches for. And to him – this is play. But there’s NO creative play whatsoever – no imaginative play. And that’s a goal he’s now going to work on. I’m good with that.

I should be clear – I’m glad we have this program in our lives. I’m glad we could just say, these are our concerns, now please make them your goals. And they listened. But this is only the beginning.

Right now, our plan is to start with the EI services next week. A developmental…something or other will come weekly. Speech once a month. OT once a month. In addition, I’m going to pursue outside OT services, where he will travel to them, not just them to us. This boy loves to be put to work, loves a task, and I think the outpatient OT services would be very beneficial to him. In addition to all that….we are going to have him evaluated for Autism at the end of May. Originally, I wanted to wait a while, to see if the Birth to 3 people and the outside OT would do enough for him to show some significant progress. However, speech and OT at our house once a month is not much at all. If he were to qualify and be diagnosed on the spectrum, the Autism people would take over and his hours of service would dramatically increase. Considering it’s almost summer and I’ll be home every day, it makes sense to have these services crank up while I’m home. And if the evaluators think he might be diagnosed with Autism, then why would I wait for that kind of evaluation?

Well, because then he’d be diagnosed. It’s just a mental leap I need to get over. And I will.

I know he’s young, I know he could be Autistic. Or maybe not. It’s too soon to tell. But to end on a positive note, we have already made changes in the last week and we see a difference. We ignore his “eh, eh” and if he wants us badly enough, he’ll come to us or name what he wants. Sometimes what we assumed was him wanting something (“Couch!”), was actually just him naming what he saw, and we jumped in too soon. Yesterday, he wanted me to turn the fan on. He used to point to it, “eh, eh!”, and I’d say, “Do you want me to turn the fan on?” And he’d say “YEAH!”. Now, after a few days of me ignoring him, he pointed at it and said, “On!”. I waited and then said, “On?” “Yeah!” I then asked, “What is it?” And he said, “FAN!” I repeated, “Fan, ON!” And I turned it on. We might be on to something here.

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6 thoughts on “Getting past the labels.

  1. randomsqueaks says:

    I don’t know if this was said before, but the people coming to work with B should teach you ways to work with him in between appointments. Your nanny sounds great and will hopefully be willing to include whatever suggestions they give into her daily interactions with him.
    Back to my long-ago background in speech, a lot of therapy is simply devoted to specifically working on eliciting the desired sound or word. You ignoring B’s “eh eh” nonspecific communication forced him to produced the desired word, and even connect two words. That’s great! A lot of parents (myself included) head for the path of least resistance with behavior (anticipating demands and avoiding tantrums) and don’t push verbal development like we could. Your posts have given me a gentle shove in that department, as I’m sure M and V can say more than they do. It’s a long road to parent these little ones now and as they grow but it’s worth it. I’m so glad you’re facing this challenge head-on instead of being in denial like so many others would be. Keep us updated because we’re obviously all supportive and interested in B’s growth. And don’t forget about your sweet little girl in all this. 🙂

  2. Daryl says:

    I’m so happy to see you’re starting to feel better about the whole process and what it means for your family. I’m guessing the person who will be working with you every week is a Developmental Specialist. That was my title when I was working in EI. And if the set-up at your agency is similar, that person will have regular communication with the SLP and OT so that everyone is working on implementing the same strategies with you. I know it seems like more is better–and for some kids it absolutely is–but sometimes it’s just more. Remember the whole point of EI is to work within your everyday routines and activities, not to disrupt them. And based on what you’ve said here, it sounds like B is a quick learner, so hopefully he just needs a little nudge in the right direction. It seems like the timing of all this worked out so you’ll have all summer to do some fun, creative, language-based play with both your kiddos!

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