Problems with Occupational Therapy 




Gavin and I are here at Akron Children’s Hospital for his Speech Therapy. While we were here, I had to check on what the deal was with Emmett’s Occupational Therapy, since it was stopped during his Functional Independence Group. 

The group finished up a week ago and Emmett was supposed to pick right back up but unfortunately, that’s not going to happen.  

His therapist had a baby (Congratulations again if you’re reading this ☺️) and we were supposed to pick up with another therapist until she came back.  Something happened, Emmett has fallen off the schedule and no one knows why. 

I’ve confirmed that Emmett will be without therapy until at least the second week in September.  

This is really frustrating because Emmett is dying to return to therapy. 
To put a positive spin on things, he’s looking at missing two or three more appointments rather than missing six or seven because he’s only seen every other week.  That’s a good thing, especially as Emmett will no doubt be counting the sessions missed.  

I’d say I’m angry and in a way I am because this shouldn’t have happened.  That being said, we can use this as an opportunity to see how well Emmett retains what he’s gaining, while he’s taking a break from therapy.  

This is actually pretty important because it’s the same thing we did with Physical Therapy as well. He’s supposed to be getting back in for Physical Therapy prior to school starting, so we can see how much progress was retained and how much was lost in the three months or so since he’s not been in Physical Therapy.  Don’t hold me to three months because that’s just a best guess.  It’s been awhile as I believe he was still in school.  

Anyway, this was disappointing news.  Unfortunately, things like this happen.  It isn’t the first time and it likely won’t be the last either.

I think this happens to special needs parents more often because of the copious number of appointments they have on a regular basis.  We have to be able to adapt or these hiccups in our schedule or routine would drive us crazy.. ☺ 

16 Comments

  1. I understand what you mean, but it shouldn’t happen more to parents of kids with special needs. Are these services being provided pursuant to an IEP? How is it that sometimes these services stop and then suddenly start up again? How come Emmett’s OT services suddenly becomes a functional independence group and then switches back to OT? I am in no way being critical – I’m just wondering about the logistics of how this works and expressing some concern that you (rather, your kids) are not getting something that they might be legally entitled to with regard to services.

    • This it totally outside of school. The reason I said it happens more to Special Needs Parenting is that statistically, the more appointments you have, the more often things can get goofed up.

      The group Emmett was in incorporated OT to some degree and insurance wouldn’t pay twice.

      • So Emmett doesn’t get summer services through an IEP? These are essentially private pay services covered by insurance? And I understand that the group sort of incorporated OT, but the group seemed to come about unexpectedly for you and you didn’t really know what it was before he started it. How does that work? And maybe I’m mistaken, but I feel like therapies seem to suddenly stop and start again with little or no notice to you, with some regularity. Is that because they’re private pay services and whether insurance is covering it or not dictates when they have services? Again, I’m not being critical, just trying to understand.

        My daughter receives (among other things) OT through her IEP, but I also pay privately for OT services outside of school. I’ve been going through the ringer getting insurance to cover it. While plenty of Congressmen are touting their triumphs in getting services for autism covered by insurance, I’ve found that generally only applies to ABA services, which is all well and good, but there’s a lot more than just ABA.

        • Anyone that reads this blog and has seen so many ‘all of a sudden’ things that happen, pretty much should know that Rob dropped the ball. He is terrible at calendar management. All of the emergency medicine runs, the years of no dental, the school starting early ‘all of a sudden’. It’s not hard to figure out what’s happening

          • Moe or is it Zoe… I can’t keep track because you keep commenting under different names. Don’t bother denying it because I have your IP and email address. I’m tired of your mean spirited comments and you’re using multiple usernames to leave these comments.

            Based on your mean spirited and hurtful commenting history and your misleading commenting practices, one might consider what you’re doing as “trolling”.

            Why do you feel the need to do this? What is it about this blog that keeps you coming back to leave your unhelpful and judgmental comments? I’m actually curious at this point.

            • Thanks Rob. The missing piece that I wasn’t getting that you provided was the waiting lists. I understand between that and Medicaid you’re sort at their mercy to some extent. And believe me, I know there’s a huge difference between what’s provided pursuant to an IEP at the school level and what can be done outside the school. But even so, why not push for the summer services through the IEP? Something is better than nothing, and if you can make a legitimate argument that without such services there would be regression that’s the basic requirement…

              And thanks to Moe for telling me what I “pretty much should know.”

            • Honestly I’m hoping with all hope you will see that most things that happen to you, are because of you and no one else. Once you accept that and change the way you do things, or don’t do things, you will see it gets easier. But your constant need to blame everyone but your poor choices is what keeps you down.

        • Okay,

          Emmett has never had summer services through an IEP. Frankly, OT/Speech/Physical therapies are of far lesser quality in the school environment. They are very basic and focus only on what he needs to navigate school. The boys have been in private therapies for many, many years.

          The group popped up at the last minute for us because it was a last minute thing. He was invited to participate in this pilot program they were getting ready to start. It was honestly a last minute thing. One day as we were leaving, they asked if I would be interested in Emmett being a part of this new program. I knew the basics and thought it was a great opportunity for him.

          The confusion came about because his OT didn’t have a chance to give me all the details other than when to show up because she had her baby early.

          Everyone had thought she had called me but she didn’t. It’s not a big deal, she was busy having a baby.

          The problem came up when I showed up for Emmett’s OT appointment after the group had started and Emmett had been removed from the schedule while in the group. Okay, I didn’t know that but whatever.

          Emmett was supposed to pick up OT as soon as the group was over. I asked about that last week and they said we would figure that out today. Well, today arrives and they have no spots available because they were down a therapist. He never got put back on the list because he was the only patient of this particular therapist that was invited into the group.

          Yes there are sometimes sudden starts and stops because everything is based on a wait list. Too many kids and not enough therapists. On the other side of the coin, Emmett’s a managed care provider for Medicaid and that can present problems sometimes because there have been a ton of changes and there are times when additional sessions aren’t approved right away.

          I know you aren’t being critical, so no worries.

  2. It never ceases to amaze me how people feel the need to Sunday morning quaterback other people’s lives.
    Providing case management services for people with special needs and medical conditions is a speciality and a full time job. Trying to coordinate the care of three children with varying diagnosis, co-morbid medical issues, while still trying to be a parent and provider?
    Not to mention if you or your spouse have any of your own issues, possible financial issues (of which there will be many) and dealing with friends and family (some get less tolerant as years go by and they believe you use diagnosis as excuses not to attend functions).
    So I believe it is less about dropping the ball and more about holy cow, how do you only occasionally drop one (which I am not saying happened here I don’t think it did) when every day you juggle thousands?

  3. I think Braden’s point is a good one, and he gave a perfect example to back it up. Some people are just going to read a post and just say “What the f-” because, as Braden said, there’s something in that post is something the reader just can’t get past. I’m not going to speak for Rob, but I have to imagine that for him, it’s near impossible to put everything into its proper context before posting, either because of the style of his blog (numerous daily posts capturing what’s going on in the moment), lack of sleep, and/or simply because there’s a LOT of context that would constantly be provided. However, to be fair, and my dialogue with him on this entry demonstrates it, that if you respectfully ask questions, Rob is generally very receptive to putting things in their proper context. I’ve seen Rob do this on countless occasions. I’ve also seen Rob acknowledge that he’s dropped the ball on something. And, I’ve seen situations where, in my opinion, Rob may have missed something but he just doesn’t see it. But who am I to judge, and anyway, from where I sit, I see a guy who’s trying to do the best he can in a very challenging situation.

  4. Ha…I thought Sunday morning sounded funny. Obviously football us not in my wheelhouse.

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