We took Gus to the North Fulton Training Center in Sandy Springs today to be evaluated for Babies Can't Wait. I had hoped they would observe and evaluate him and then report back to us that he did indeed qualify. Hang on, let me back up a minute.
In my deep heart of hearts, I've felt like something has been "off" for a while. Gus still speaks a lot of gibberish and while it's somewhat normal, it's not progressing. He doesn't use pronouns (doesn't say, "Gus go" or "Me do" or "Mine") ever. He doesn't even refer to himself if you ask him what his name is. If you say, "Where's Gus?" he will point to himself and say, "Gus" but he doesn't just tell you that his name is Gus.
So anyway, while I have known that something isn't right, I had a part of me that was hoping that it was just in my head and they'd tell me that he's absolutely fine. After all, when I told his pediatrician at his two-year appointment, that I was concerned, she didn't hesitate to write a referral and said if a parent is concerned, she let's them have a referral. But she herself, wasn't concerned and didn't bring up taking him for a referral.
I wasn't sure what to expect today. We walked in and there were three individuals. One was LaTasha, and she's the person that I talked to on the phone to set up the evaluation. Then there was the evaluator named Rebecca, and then a guy named Phillip who would also be doing some of the evaluation.
Right away, Rebecca had Gus join her on the floor and Steve went down too. She asked Gus to point to a few pictures for her (and he did) but then he saw the train and wanted that. While they were on the floor doing that, I was asked questions by Phillip. The whole time, LaTasha was at a computer just observing and taking notes.
We were there for an hour and a half. When we started, Gus was somewhat hesitant and nervous/anxious, but after an hour or so, he was himself and started into his happy gibberish chatter. I'm glad they got to hear it. He did really well with the tasks that they asked him to complete, and after about 90 minutes, they started to compare their scores/notes.
I don't remember the exact numbers for the five areas, but 85-100 is considered normal range for the five areas. For gross-motor, he scored 100. We weren't surprised by this at all. His cognitive score was in the 90s, but then the auditory processing (how well he listens and follows directions) was like 84/85 (not enough to be a moderate delay). I kinda knew his speech and language would be delayed, but in order to qualify for BCW, you have to either be significantly delayed in one area, or moderately delayed in two areas.
His speech and language was like 79 (moderately delayed) but then his sensory processing was also 79/80. I was shocked. So he was moderately delayed in two areas, and hence, he qualifies for services through BCW.
So what does this mean? I was completely shocked by the sensory processing delay. However, when Rebecca explained it, he's basically sensory-seeking. The medical term is sensory modulation disorder. He's hypo-sensitive. Several of the things that I just thought were either normal for a toddler, or just because of teething, are aligned with being hypo-sensitive. For example, he sucks on his shirt (he'll get as much of the neck area into his mouth and wad it into a ball and suck on it. We have to tell him to stop chewing on his shirt. Sometimes, he sucks on his arms (giving himself a hickey). He puts things into his mouth all the time (we assumed it was teething). He'll bang his head on the floor occasionally, sometimes walks on his toes (when nervous, and though it was just a quirk- but it's what hypo-sensitive kids do). He also loves messy play and loves play-dough. He likes spicy food, he loves swings and slides and anything with a lot of movement.
Other things like the tamborine at Rigg's birthday party and it freaked him out... and loud noises and the vaccum... all go with this. Being scared of elevators and physically clinging when in one (which he does), and being a thrill-seeker, all go with this. Loving being tossed in the air, wrestling, jumping on furniture, trampolines, his pillow racer... running and hopping and galloping instead of walking.
So anyway, the list is long of things that we thought were just normal but turn out to be sensory seeking traits. The good news is that we will receive services to help. We can only pick one area for our focus, and for now it's the language. He was evaluated at one year and nine months. Just under a year behind. So they want to get that under control, but they said that often times, once you get the senses organized, language will bloom. We're hoping that's the case.
We'll get a call within three weeks from our coordinator and then we'll set up our therapy. We can go a few months with S&L and then move into Sensory Processing if we want. The good news is that he's qualified and isn't three yet. We'll be able to transition him to Fulton County Schools at age three and they'll continue his services at our local elementary. He has been diagnosed and will continue with services until he no longer needs them.
Rebecca said that her son was SPD- Sensory Seeking and got it in check before school started. My hopes are that we can do the same. I fear that Gus will be labeled a bad kid because he's not the kind of kid who will sit still and focus. It's been my fear all along. Fortunately, we'll have plenty of time to work on it (and his language) and can make some progress before he's school-aged. It makes me even happier that I've got an elementary background and plan on keeping him home for preschool.
I think right now, if he were in preschool, we'd be having a lot of problems. I don't want him to dislike school or feel like he's not liked because a teacher can't tolerate his personality. It's why I don't like his gymnastics teacher-- but that's a different blog post.
I'm going to head to bed. It's been a long day. I've got a lot of reading to do on SPD and OT and I want to familiarize myself with how I can best help Gus.
We have our home study tomorrow (I guess technically it's today since we're past midnight)... wish us luck!!!
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2 comments:
I'm glad it went well and that you are pleased with the results. It can be disheartening to find out there is a delay, but it's exciting that we can have access to such great services to help. I hope you love the therapist as much as we do ours, and that you see the progress you want. I bet Gus will have a lot of fun with it!!
That's great that you got some answers. Even though he was diagnosed with delays, it's wonderful to know that there is already something set in place to help him catch-up. The part about the sensory processing is interesting. I wouldn't have known about that either.
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