Monday, February 24, 2014

The Latest on T

I haven't blogged about Trent's therapy in an eternity, but it's high time to do an update. I'll try to not make this super long, apologies in advance as I'll likely fail.

T today during our appointment

About 9 months ago, Brent and I were really frustrated with his 'special school' because they weren't working on the areas we felt were the problem areas. Trent was also acting up a lot more in anticipation of going. We decided it would be best to take a break for awhile. 

I don't feel like we did this in denial, but we all just needed to catch our bearings. Drew was still a baby, I was battling post-partum, and it was just all too much.

After about 5 months 'off' Trent wasn't any better or worse {not that I thought he would be}, but status quo for him isn't exactly ideal. Still lots of tantrums and out of control behavior ... and now there's a new little person in our house to protect. He is such a sweet and fun little guy. He loves to tell jokes and snuggle and read books and play. But when he loses it? He LOSES IT.

B and I were also debating a lot the right thing to do for T in numerous areas. We were still having some issues with our daycare - did we need to change schools? Would he be ready for kinder next year? {B said yes, I said no.} If we did decide to do kinder next year, where would he go - private or public? We were back to square 1 and it stunk.

Through a mom at church, I found out about programs offered by school districts for early childhood intervention and set an appointment for Trent to get evaluated through our district. If he qualified, the services would be free through our property taxes. We set an appointment for November and Trent promptly got his leg infection and spent a week in the hospital. Our appointment got rescheduled for January.

At the appointment, the therapists were pretty upfront that to qualify for treatment, Trent would essentially need to be pretty bad off. I immediately figured he wouldn't qualify and I was right. Thankfully, my kid isn't autistic or a danger to others, but it's pretty frustrating to be told there's nothing wrong and how ready my child is for kindergarten when I know these things are not true. No mom wants her child to be different, but when you know something isn't right and to be told by THERAPISTS that he's great...disappointment didn't begin to describe how I felt.

I decided to take a step back and set an appointment with our pediatrician. I put together some information about sensory processing disorder for the appointment {I don't know if I ever mentioned here before, but that's what I think T has and if you click on the link and look at the bullet point details...90% of that is T}. She decided we should see a behavioral/developmental pediatrician, and/or a psychiatrist, and/or a new OT. Brent and I discussed these options a lot and decided to start with a therapist. There are numerous delays/conditions that OT wouldn't help, and we still don't have an official diagnosis, so we didn't want to go down the OT path again just yet. We did set a developmental pediatrician appointment but due to their backlog, that appointment isn't until April.

Today was our evaluation with the therapist, Ms. Lauren. I came armed with a letter from our school Education Director about an evaluation she did with Trent, a letter from my parents about what they see from him on the days they keep him, a checklist on sensory processing disorder, and the original evaluation results we received from the first OT. Whew.

Ms. Lauren was great to talk to. She said she thinks we'll get to an official diagnosis and doesn't think it's something on the spectrum. We're going to officially start treatment next week and go from there to see what all this is going to entail.

I'm a little overwhelmed when I think we could end up in OT again in addition to therapy, and we still have to tackle his lisp. I feel like he and I are at doctor's offices non-stop. But I'm excited. For the first time in a long time, I feel hopeful and optimistic. I'm tired of not knowing how to help him and losing my cool more times than I'd like to admit. I'm ready to look forward and focus as a family on how to best help our wonderful, adorable, SMART, fun, and funny little boy.

Here's to the journey...


Courtney said...

Grace is in OT for sensory processing issues! It started with her lack of eating around 18 months and we started recognizing a lot of her other "quirks" as sensory related. Weekly therapy has been great! She's in the middle of a 4 month program called Therapeutic listening, she listens to specialized headphones for 30 minutes twice a day and it has made a huge difference. It is hard and I'm still learning how to best help her. Thanks for sharing and I hope y'all find the answers and help that works for your sweet family!

the blogivers said...

Man, I can't imagine how frustrating/stressful it must be to not have an official diagnosis! Though no one wants their kid to have something "wrong" with them, it's certainly easier to deal with it and treat it when you know what it is. Here's to hoping you get answers that point you in the right direction soon. Hugs!

The Roaches... said...

I say Trent is lucky to have parents who aren't giving up, aren't in denial, and aren't just ignoring the behaviors. Trent's at such an advantage because you guys are addressing all of this while he's young. You haven't waited for an elementary school teacher or administrator to call you to begin the process. I know it must be completely frustrating and you must feel helpless at times. Just keep at it. I'm glad you found someone who's giving you hope again. :-) Hugs to y'all.

Kelly said...

Hopefully you guys will get everything all figured out. Did you get the email I sent you about it?

Karen M. Peterson said...

I'm sorry it's been such a frustrating process for you, but I'm so glad you're on the way to finally getting a real diagnosis. This Ms. Lauren sounds like such a blessing for you and Trent.

KristenW said...

Sounds like it's all working out:) You're a good mommy! We love that sweet boy!