My meeting with Jake's OTs

Ok, I finally have time to talk about my meeting on Friday with Jake's OTs. 

The meeting was with two people -- Candace is the person who runs the practice, she is the one who did the speech eval and autism screening.  The other, Rachel, is the OT who did the OT eval and who told me Jake has SID/SPD.  We will be working with both of them.  They are both very nice, I think early 30's, pretty, friendly, understanding and patient, open to questions -- basically everything you'd want in a therapist you're going to be dealing with for the next year or more.  (Not that pretty is necessarily a must, but they are just very nice, pleasant people.  LOL.)

Anyway, I walked in and they asked if I had any questions before we got started.  I said "Actually, I do, and I have a 2 page typed-up list of the things I want to talk about.  And I have a copy for all of us."  Bwah ha ha ha.  This is what to expect from a secretary, people.  Candace was awesome and literally read through the whole thing outloud, stopping when necessary to give me answers, asking Rachel if she agreed with her thoughts.  We discussed all sorts of things.  My list started with a clarification of exactly what Jake's problems are -- based on The Out-Of-Sync Child, I included a list of things I'm positive he doesn't have problems with (such as dyspraxia and vestibular problems), and then the categories he does seem to fall under. 

sensory modulation
-- over responsive
-- sensory seeking
tactile over-responsivity/defensive
oral defensive
difficulty modulating visual sensations (minor)
difficulty modulating auditory sensations (minor)
in addition to this, major communication issues

Next was a list of specific behaviors I'm hoping we can address and deal with in the course of OT -- basically a goals list.  Then came a long list of questions I had about therapies, diagnosis, dealing with the school district, etc.  They answered all my questions the best they could, and they were completely supportive of my thoughts.

I told them a little about the books I've been reading and about the activities I've been doing with Jake at home, and Rachel said she has never had a parent so excited about therapy and who is pursuing knowledge about the issues like I am.  (That's a compliment, right?  LOL.)

We decided to start this coming week on two weekly group therapies -- one is a social language group, to get Jake talking to other children.  The other is a food group, which I've mentioned before.  Then we're going to do private OT every two weeks with a focus on teaching me how to work with Jake at home.

They also want me to take Jake to a psychologist to try to find the root of his anxiety issues, and to rule out OCD, PDD, and Aspberger's.  I have to get a referral from Jake's ped for this -- but I was afraid that whoever he told me to go to wouldn't be able to see us for a year like the last people he recommended (for the autism screening.)  So my Sunday School teacher is a psychologist, and I talked to him -- he gave me the number of a psychologist who he THINKS will be able to help me, and if not, he says he'll keep looking.  It's important to rule out those other issues, because if Jake DOES have them, that will change the goals of our therapy and how we approach treatment.  I'm going to call today to see if this psychologist will be able to help us.

We'll also have to meet with Jake's ped soon anyway, just to talk about what our OTs found, and for HIM to make an official diagnosis.  For some reason, the official diagnosis has to come from a doctor, not from the OTs who found the problem.  But our ped is great, and I think he knows about SID ( you know, since a lot of doctors still don't know about sensory integration issues and don't acknowledge them as valid!   In fact, there are currently people working and lobbying for SI issues to be listed on the official list of problems that are recognised by psychologists and thus other doctors and insurance.  whatever, people.)   When I asked him for a referral for an autism screening, he said "I don't think that Jake has autism.  There are a lot of things that can SEEM like autism, but that aren't.  But a screening is a good idea just to ease your mind about it."  I think he will be good to work with.  (I was on the fence, thinking Jake sure did have a lot of BEHAVIORAL symptoms of autism, but there were so many criteria he DIDN'T fit -- I just wanted a for sure "no" answer.)

So the meeting went really well.  It lasted about 40 minutes, and it was free!  Yay!  I was thinking I was going to have to write another check.  LOL.  And they are working with me to try to get my insurance to pay for the OT appts.  That might be an on-going struggle, but it's nice to know that they understand how important that is to me.  We'll do re-evaluations every 6 months to measure Jake's progress and see if we should alter our strategy.

I'm excited to start with the OT sessions this week, even though I know the first couple group meetings will basically be torture for Jake.  but he'll adjust!  LOL.

Comments

[Sandi P.]

What a wonderful mom, and thus advocate you are to Jake! I admire you immensely Jen.

I'm sure with you the path you are on now, you'll be able to find all answers to the issues Jake has, as well as how to handle them on a step by step basis.

[Kelly]

I echo Sandi's words, she said it best.

Much love to you and Jake,

Kelly

[Leslie]

Agreeing with the others..Jake is lucky to have you.

Sounds like you have a great "team" assembled to help Jake

Leslie

[Ninotchka]

You are so awesome, Jen. Not only are you helping yourself and your son but you're helping anyone out there who might be experiencing the same things just by writing about it. I think it's just wonderful that you are becoming so well informed. Look at you! :)

[Katie]

Jen, I'm so impressed with how prepared you were for this meeting. That makes a huge difference and it sounds like you have a great team to work with!

Jake is a lucky guy to have a mom like you :)