Tuesday, October 09, 2012

Babies Can't Wait

Most of my family and friends know that I've been somewhat concerned about Gus's speech and language development for a while. The more kids (his age or a bit older) I'm around, the more I get the sinking feeling that something's not right.

Back in May when I took Gus for his two-year well-baby check, I told his pediatrician that I was slightly concerned with his language. The survey they gave me had five questions, and of the five, he was only doing one or two of the things consistently (one was specifically about the number of words that he was using). She said that anytime a parent has a concern, she doesn't even blink and she'll write a referral. She felt it was best for us to take Gus to get evaluated and get answers for ourselves.

So I called the number that she gave me for the referral and I set up two separate appointments. One was for a hearing evaluation (I know he can hear, but it's required and was going to be an hour-long appointment). The second was for his language screening and it would be a two-hour appointment. Cool beans. Got the appointments and we headed to Michigan & Indiana for our May vacation.

While we were in Michigan, I got a call from the lady at the medical group (Children's Healthcare of Atlanta) telling me that our insurance was out of network for them and that if we still wanted to bring Gus in, it'd be several thousand dollars. We decided that since we were only slightly concerned (of course, his language would keep getting stronger, right???), we'd go ahead and pass on the appointments.

Fast-forward to last week. 

I belong to several online support groups for moms of kids born in May of 2010. One of my groups is on FB and several of the moms were commenting about how sassy their kids are. These are kids the same age as Gus (born in May of 2010). The 2yo dumped out books that the mom had just cleaned up, and the mom said, "Why did you dump them? I'm about to vaccum!" and the 2yo replied, "You are so loud and annoying!" I couldn't believe that a kid the same age as Gus could talk like that. Then another person said that she was trying to snuggle with her son and he said something along the line of, "Get out and leave me alone, you smell." I was floored. Not only because the kids were speaking to their parents like that, but because kids the same age as Gus are ABLE to speak with clear thoughts and in complete sentences.

So maybe I'm dense. Maybe I've been in denial and living in a bubble. I feel like Gus makes progress and he is repeating back words and he has phrases that he says. He sings. He talks all the time, but it's 99% gibberish. I just thought this was all normal. (I hate that word.)

Back in July, my friend Beth gave me the name and number for an intake coordinator for Babies Can't Wait. It's a program here in Georgia that's state-funded and they provide services to children under the age of three. They do just about everything. 

I decided to call Humana (our insurance) and see if they could recommend a doctor in our network for speech therapy. The girl was nice enough, but let me know that we have to meet our $1,000 deductible before anything will be covered by insurance. FABULOUS.

So I immediately called Babies Can't Wait. This was last Tuesday afternoon. October 2nd. When I talked to Beth in July, she said you usually call and it takes a few weeks for someone to eventually get back with you and then it takes months before they come to do an evaluation. I was not expecting anything quick when I called.

I got all my into into the system and was told that someone would be calling me to set up the initial meeting for paperwork and questions. I was called the next day to set up the meeting. Talk about quick!

We decided to meet today at 1:30. The intake coordinator's name was Kathy and she and I had so many connections when we talked on the phone to get the initial information (our names, her family is from the Raleigh area and she knew where Holly Springs was, her birthday is May 11th, and her son's birthday is October 2nd). Anyway, she came to our house today.

I think my background in elementary education has helped tremendously because I knew exactly how an IEP works. If Gus qualifies for services, he'll be on an IFSP (Individualized Family Service Plan). It's just like an IEP for kids in school.

She did a few hearing tests while Gus was sitting at the table with me and he heard each of the noises she was making (she had a bell and some other devices that made noise). She said she was 100% certain that it's not a hearing issue (which is the first thing they try to rule out). She listened to him talk for a bit and then at the end, she said that she couldn't guarantee anything, but she was 99% certain that he'll qualify. 

So she got all my info and then said that her job as the intake coordinator was done. She'll pass on our info to the person who'll be doing his evaluation. The evaluation is free and they'll do a series of tests to see where his deficiencies lie. He has to be significantly delayed in one area, or moderately delayed in two areas.

She said it'll be between now and ten days and we'll hear from the evaluator. Then we'll schedule the evaluation for him and from the time the evaluation happens, they have 45 days to start services if he qualifies. She said they usually get it all figured out quickly because they don't like to delay starting services. Her guess is that he'd need once a week therapy sessions. 

Because he's turning three in May, there will be a transition meeting in March to get him under the Fulton County School program (Babies Can't Wait is only until they're three) and then the school would see him until he no longer needs services.

I'm torn on the whole thing. I have this huge binder that Kathy gave me with all kinds of information in it about early intervention. I am eager to see if he qualifies and part of me wants him to qualify because I know something's not right and I want him to get help. But there's another side of me that's a bit sad. There's nothing wrong with children with special needs. They are capable and functioning and usually just learn in a different way. I believe this 100%. But I don't want him to be deficient in anything. I don't want his speech and language to hold him back.

I know right now he's two and it's not really that big of a deal. But as he gets older, I don't want him to have any stigmas against him because he's getting help for something he can't control. I don't know. Maybe I'm crazy.


I'm just glad that I finally called and I am getting things going for him. Whether he's delayed and qualifies for services, or if they say he's perfectly fine, I just want to have answers. I told Kathy that my guess is that he's somewhere between 12 and 18 months with his language and she agreed. :-(  She did say that usually kids who are advanced in the gross motor area are lacking in the speech and language area. I just hope we can get him more up to speed and on par with where he should be developmentally.

Enough from me. Just wanted to give an update. I'll post again when we have his evaluation! Please keep us in your prayers!!


TTABaby said... Best Blogger Tips[Reply to comment]Best Blogger Templates

It's funny you post this because baby girl is going thru the same thing right now. I know she is much younger but at first when we were offered slp services I was upset. She will have a hearing test but I'm not worried about her hearing. It's interesting what you said about motor as she is above average in motor but just a little behind in language. I also know boys tend to be behind girls in language development. He clearly is smart so he may just need a little help to catch up.

will + adri said... Best Blogger Tips[Reply to comment]Best Blogger Templates

Wow! That's a lot to have to worry with. I certainly hope they determine he's right on track or there's something they can do to help you, just to put your mind at ease. My nephew took a long time to get started with his language, but he's 12 now and has no issues. I've heard boys are sometimes slower too, but it would not make me worry any less. I'm glad you found someone to do the evaluation and get you some answers.

Not So Supermom said... Best Blogger Tips[Reply to comment]Best Blogger Templates

Cathy, we are in NC's equivalent of this program. Reagan and Hadley have been receiving speech services once a week since July/August, and the progress they have already made is phenomenal. I'm so glad we made the decision to pursue this kind of assistance. (I was very hesitant at first and took the wait and see approach when our pediatrician first had concerns a while back.) It is amazing how much more smoothly our days run and how much better behavior is now that they are not so frustrated with communication issues. I fully support you and Gus in this and I think you'll be as pleased as I am! Good luck!

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