Early Intervention Update Part I

Ace hasn’t been to any Early Intervention (EI) services since late November.  Not because I am a bad mother, but because the very same people who evaluated him and decided he had some issues to work on were making me feel like I was wasting their time taking him to be seen.  I should re-word that, as no one can MAKE me feel anything, but that was how I was feeling nonetheless.

He was not cooperating with the massage therapist at ALL, so that was really just a frustrating struggle.  I was taking him to OT at the Children’s Neurodevelopmental Program, and on the second visit, she asked me if I felt like he needed to be seen and kept commenting on how great he was doing.  His behavior seems to ebb and flow, and he was having a good day at that time, so I kind of stammered, “I dunno, yeah, he’s doing great!” and that was the last time he was seen there.

We had been (supposedly) put on the waiting list for the best OT in town since August or September, and she has never called us.

Add to all of that a bill I received for $200 for what I was under the impression were covered services, and I just couldn’t do it any more.

For this to all work for us, it would need to be (1) covered by insurance and/or the state as I was under the impression it was; (2) in-home services as I just can’t drag BOTH boys around (especially when the OT doesn’t want Nate around to “distract” when Ace is to be seen — what am I supposed to do with Nate?  Lock him in the car?); and (3) provided by caregivers who don’t tell me one week how he clearly has issues and then look at me the next week like I’m an idiot for having him in the program.  The funny thing is, everyone I have ever talked to who has a child in EI says it has been free or covered and that they receive in-home services.  So why is it that I can’t seem to find the same?

However, I did get a call today from A-M, our EI coordinator who was checking in to see how things were going.  I will say that through all of this, she has been really great.  She’s done as she said she would, and I know if I talk to her, she will help me get back on track.  However, as she was starting to ask how things were going, I saw that I apparently had forgotten to put a diaper on Ace after I took his dirty one off and not only did he leave a fresh poop-cake on the floor, but Nate had found it and was poking and squishing it.  Nice.  I told A-M I would call her back, and I will…  tomorrow.

2 Replies to “Early Intervention Update Part I”

  1. Definitely keep in contact with the coordinator. If things are not going as expected then contact her! If you get a therapist who states that he doesn’t need it (which may be the case) then he needs to be reevaluated. Keep a journal of things you see that may be “off” with his movements and mobility so you can tell the therapist specific things for her to look for. Like, Nate can do this for the past 3 months but Ace still cant do it. Its hard to evaluate every possible thing in a 30 minute session. When you have a twin who is not behind then you have something to compare to. But of course Nate may be ahead and will make Ace look more behind. Communicate well with the therapists but in a curious way, not in a defensive way. Talk to them so they will “teach” you what is going on. Most therapists a great teachers but some are not very good when people get defensive. And keep a record of conversations to talk to you r coordinator about. She may need to talk to the therapist to get the scoop. How do I know all this? I am a physical therapist but I’ve never worked with kids. I only work with the elderly. Very different! But remember you are his advocate. If he needs intervention then you are the one to make it happen because he can’t do it for himself. He may catch up without any help at all. Just being around his brother may be enough motivation to get things going. It just depends on how severe things are. But the services should be available at no cost until he is 36 months. I think it is a federal law. After that he is eligible to receive public school services. They have special preschool for special needs kids. Again, I think that is a federal law. Some school districts have better services than others. I also suggest finding a special needs support group in your area. You will find out from the mothers how the system works. They will know and have a lot of knowledge to share so you dont have to reinvent the wheel! Good luck!

  2. With Ian we couldn’t just “quit” seeing the EI therapist we had to go through and evaluation with higher ups visiting a session to determine if Ian was truly ready to graduate from services. An EI therapist alone shouldn’t just say, “Do you think he’s fine? Great, we’re done” that does not seem right.

    AND they should be coming into your home. That is ridiculous that you need to travel AND only bring one child. Good lord. Sounds like your EI therapist is uniformed.

    and, I TOTALLY agree with Stacy (above). EI visits are covered until 36 months (and further IF needed). Ian just happen to graduate after 36 months.

    You need to talk to some higher ups AND get your money back. We always received a receipt for services but they weren’t bills…just to inform us they were paid for by Easter Seals.

    When you have kids in the EI wave you need to be vocal and very proactive. It’s frustrating but true. Hang in there Sommer.

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