Early Intervention – a timeline

In one month, I’ve discovered a new world full of facts, activities, ideas, milestones, and goals – the word of Early Intervention.

Here’s how our Early Intervention timeline has gone thus far:

-B had a speech regression at 19 months (pronunciation). This was my initial concern – he lost his “ooo” sound and it was strange. He was found to have fluid in his ears, drained away with the help of Zyrtec. Went for a hearing test a few weeks later, passed with flying colors. His pronunciation started to come back.

-Birth to 3 (our state’s EI) came anyway for an initial evaluation because of a few of his quirks (throwing his head back on the couch, avoiding certain textures, irritation with things like crumbs and specks of dirt) B was picked up for services: once a week by the developmental specialist, once a month for speech, once a month for OT. At that initial evaluation, the evaluators recommended B have an autism screening because of his delays in communication, sensory processing and cognitive abilities. He was pointing and shrieking, “Eh, Eh!” and we were answering him, furthering that cycle. There was no direct communication with us.

-At that initial eval, we were told to ignore his cries and wait for him to come to us and ask for help. HA! Such a thing would surely be impossible. My fit-throwing toddler who wanted what he wanted and there was no other way would not be asking us for help.

-After a few weeks of once a week services by the developmental specialist, he made HUGE gains. The impossible did happen – we ignored him, and he started to come to us. We taught him the sign for “help” and he used it (while saying the word). His “eh eh”s decreased dramatically. Not only that, but his mood brightened. Fewer tantrums and much more affection for his sister and the dog. The child who never gave his sister a second thought was now fussing when she cried, saying her name again and again, kissing her ouchies. The boy who despised the dog was now chasing her for a snuggle. A few weeks in, and the specialist saw a difference in him, wondering aloud if he would even qualify as autistic.

-The EI women suggested that B would benefit from additional outpatient OT services, since he loves to be put to work; put to a task. I took him for an eval at a local hospital and he was a trooper. His fine motor skills excelled, his gross motor skills – not so much. What I thought was a typical kicking and throwing distance for a toddler under 2 was apparently not too typical. He demonstrated that part of his sensory piece might be the unfamiliarity with spaces that aren’t steady – that will rock under him, like an open platform swing or a balance beam. Yes, this outside OT would pick him up for once a week services for 12 weeks starting in mid-June. Their focus would be to de-sensitize him to certain things and help with the gross motor skills.

-Birth to 3’s OT came for her first session at our house. WOW. She rocked, and she alerted me to something in B that I never read in the pregnancy books. Never saw this one online. Never knew this one existed. Side-to-side range of motion. B never crawled. I know now that this is a huge red flag. Babies crawl. In some form, they crawl. And B did not. He didn’t develop the core muscles that other babies do, that allow them to move one hand and one foot at the same time. To be on all fours and turn a head to the left or right and keep balanced. No, he never learned any of that. She showed us just how far behind B is in his range of motion. When B sits on the floor, if he reaches to the side to grab a toy, he falls over. When B stands up and needs to look to the side, he turns his entire body instead of just his upper half. When the OT sat B and C on little stools and put the sensory bin on the floor, asking them to play – C reached down and instinctively put one hand on the bin to steady herself, and reached in to play with the other hand. B did not know to do that – he bent over and fell right in the sensory bin. B has no range of motion, even though he jumps, runs, moonwalks backwards and stands on his tip toes – all are straight ahead movements. He can’t bend to the side to save his life. This was something I had NO clue about. She gave us excellent ideas for how to help with this:

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Exercise balls – I know this picture is wretched but you still get the idea. Rolling onto the ball, stretching the body. Or sitting on the ball and we sway him side to side from the waist up.

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Tether balls – using balloons. Hang them from the ceiling with string.

There are other ways, too, to increase the side to side range of motion – popping bubbles, spinning a swing around and around instead of back and forth. Anything that gets B to practice turning to the side quickly – helping him to become more balanced and develop those muscles. Three people have also mentioned one of his eyes turning in a bit, so I have a call into his eye doctor, who has been on top of this but said he was in the normal range. Perhaps now he isn’t, and this would certainly affect his balance and coordination.

-Speech came today. In the past month, his words have really increased and he is, for the first time, telling me he’s hungry by saying and signing “eat”. This is new for him. He has a new sound, the “eee” sound – and finally says, “Mommy” and “Daddy”. He even has picked up “yourself” as in, “by himself” and is starting to use it appropriately. But when he wants something, he still isn’t identifying the word. If he wants me to turn the fan on, he is coming to me and saying, “On!” And I’ll say, ” On…what?” And he says, “Fan!”. Sometimes he’ll throw in a “help” for good measure. But the speech therapist wants us to NOT say “what” – because we want him to identify the word in the beginning, not just because we asked for it. Instead of bringing me a plastic pig and saying “Pink!” He needs to say, “pig”. So we need to stop asking him to identify the word – he knows what it is, we know he knows – he just needs to say it. This is a little tough for us all.

-And finally, our timeline isn’t complete yet. We have his autism evaluation in about a month, and I have to admit I was dragging my feet on scheduling it. I don’t believe he is autistic, and I’m just scared to hear otherwise. That said, I do want him to get the services he needs and I want it taken care of now, so we’re going to proceed. We’ll see what they conclude.

I really can’t believe how far he’s come in a month – I mean, this kid was getting up off the grass on his elbows, and now he’s doing this:

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And going to a loud, hot air show, and loving (almost) every minute of it:

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My gut tells me he’s got recurring fluid in his ears, causing his meltdowns and his muffled pronunciation and will probably need tubes put in. And my gut also tells me he’s got an eye issue going on, crossing his eyes, which is affecting his balance, coordination, and desire to not be on any surface other than flat and safe. My gut tells me that once these things are addressed and he catches up to his peers, he’s going to be in a very good place.

This entire experience has been a complete whirwind, and I almost never called Early Intervention in the first place. After all, it was only a little speech regression!

As a side note, an update on Lil C. Such a trooper, she does whatever activities we are doing with B, for B. She copies him and needs him around. She’s suddenly full of SASS – demanding to do a task herself and then purposely NOT DOING IT so I can stare at her and tell her it needs to happen. So she can demand again that she do it and then finally, when the dog is about to eat her tail as C ever so slowly pours the dog food into the bowl, I may have to step in and help. Her pronunciation just took off like a rocket. She’s got all her sounds down and sounds like a kindergartener when she talks – if only she wasn’t still talking in one word sentences! She has books and songs memorized and will read “The Very Hungry Caterpillar” completely on her own if you let her. She sings the whole alphabet a lot and it’s damn cute. She’s suddenly into imaginative play, mostly with dogs, cats, and babies. She’s a very happy toddler, which I’m very grateful for.

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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.