Starting OT next Monday

[Quiver0f10]

I have his eval results and I don't really understand it all, but he is to get 120 minutes per week and he starts next Monday. I plan to sit down and have her explain things better to me at his first visit.

 

Our plan was for him to have OT for a few months then start the VT so I am happy he is starting down the path. He has been getting ST still and they started, what the professor calls, reading therapy last week too.

 

The University's audiologist is off now until fall so I can't get a CAPD eval done there, but there is a lady who runs her own clinic not to far from here. I am probably going to go ahead and have him evaluated there just so I can have an answer before the University's audiologist returns.

 

I am feeling very disjointed about everything. I have all these evals and their recomendations, but I still don't have a clearer picture of what I am dealing with and it's confusing. I am praying that just going forth with each recommendation will work towards the goal of helping him, but I can't help feel like I am still missing something.

 

Also, we will be seeing the local neuro next week and the pediatric/developmental neuro in May to adjust his meds as needed.

[Claire]

I think you're doing everything in the right order. It's a step-by-step process, and each step will reveal more information of value. You are working on meds to get the seizures under control. OT and ST are the next logical steps. Honestly, I can't think of anything major you could be missing at this stage in the journey.

 

You've had to process a lot of information in a short period of time. It takes awhile to sort everything out.

[Laurie4b]

It might be helpful to know that "feeling disjointed" is really normal at this stage of the process. You're not supposed to be on top of it yet. You're still in something like the "shock" phase of grieving and it can feel like you're walking through jello. You have so much to deal with at once: 1) understanding a lot of special needs jargon. Just getting your mind around all the new words and what they mean and how one is different from the other is a task in itself 2) You have more to add to your already busy schedule in terms of appts, which is also stressful. 3) You have your emotional reactions to all this new info, which typically sets off a grieving process in parents even if they are relieved to finally have words for what they've been observing.

 

As some time goes by, you'll start to see how certain things the OT does are helping. You will start to more than cognitively understand some of the jargon; you'll start to *see* it. Other stuff, you'll start to say...hmmm. I'm not so sure that professional was right about x. I just don't see that. (and you are also an expert on your child. You will sometimes rightly disagree.) Each new eval tends to restart this whole process, and you've had a bunch. So give yourself some time.

 

If the private audio eval costs more than the university, and you can get an appt with the university in the fall scheduled now (so you don't have to wait longer), Im not sure it would hurt anything to wait. Goodness, you've already got OT, ST, neuro appts, etc. That really is enough for one mama with a full quiver! You may find that the OT and ST combined will be helping with the audio stuff anyway while you're waiting. I had to skip VT and just do OT when my ds was first dx'd. I couldn't handle two OT appts per week and driving 1 1/2 hr round trip for VT on top of it. So you're already way ahead of my capacity and I only had 3 other kids! As it turned out, the OT hugely helped the vision issues anyway.

[Quiver0f10]

Thank you both. It is a lot to take in and I do think I am in shock still. My life has turned upside down and I feel guilty for feeling that way, kwim? I appreciate the encouragement and am glad to know I am heading in the right direction.

 

I am going to call today and see if I can get on the fall schedule for the audio eval, can't hurt to try and I prefer to go through the university.

[Pensguys]

Oh {{{{Jean}}}}, I KNOW how you feel and we're only doing VT and OT plus we had the Neuropsych evals. It DOES finally settle down and you calm down about it all and it becomes part of life. I'm actually very blessed in that our VT has been relatively simple because of doing the programs at home and only 3 month check ups (and seeing improvement) and the OT will end in May (probably).

 

Your road may be longer (or not), but there may actually be an end to it at some point...and if there isn't, it just because part of what you do. My friend has been going to OT and ST with 2 of her 4 boys for 5 or 6 years now with not much of an end in sight (at least for one of them). It will become part of your life, so just hang in there, girl!

[Quiver0f10]

Oh {{{{Jean}}}}, I KNOW how you feel and we're only doing VT and OT plus we had the Neuropsych evals. It DOES finally settle down and you calm down about it all and it becomes part of life. I'm actually very blessed in that our VT has been relatively simple because of doing the programs at home and only 3 month check ups (and seeing improvement) and the OT will end in May (probably).

 

Your road may be longer (or not), but there may actually be an end to it at some point...and if there isn't, it just because part of what you do. My friend has been going to OT and ST with 2 of her 4 boys for 5 or 6 years now with not much of an end in sight (at least for one of them). It will become part of your life, so just hang in there, girl!

 

Thanks, Penny! I am working on making a schedule for fall so I can see in black and white what our days will look like. Once things are writen down it makes it easier for me to deal with kwim?

 

I appreciate all the support ladies!