Our journey through life with hemiplegic cerebral palsy and infantile spasms

Wednesday, June 11, 2014

Opinions

Karsen had a packed morning today. We had a session with his OT and then PT directly after. Both of those aren't out of the ordinary for usual Wednesday routine for us but we had an additional appointment after. We met with his ortho. We went over what would be best for Karsen's right food (unaffected foot) since he isn't pronating as much and a went over a plan to make his constraint brace. He got fitted for all together four things. A new AFO, a smaller SMO, a new thumb splint, and a constraint brace for his right arm so we can start doing constraint therapy. (casting his good arm, forcing him to use his affected arm). He did surprisingly well, it was also the first time he actually picked out the color and design on his braces. Out of all things he could pick for his AFO (spiderman, batman, superman, camo, cars and trucks) he ends up picking out skull and cross bones.... didn't see that one coming, and bright lime green for his thumb splint. He definitely has his own opinion now. In the midst of this appointment another mom happened to be there. She asked me questions about Karsen, which I am always happy to share information, and asked how affected he was since his gait is pretty good. I proceeded to tell her his gait is pretty good, but his left hand is pretty affected and his speech is by far our biggest struggle. She then responded to me with something I didn't expect. "I don't really think there is such thing as a speech delay. I think it's parents being lazy and not forcing their child to talk.  You know, like giving them what they want with out having them use words to tell you." (Insert shocked face here). I was so shocked I didn't really respond in a way I would have expected to. I responded with "well,  Karsen has an oral motor delay so it's been a struggle". And that was that, the end of our conversation. Maybe she's on to something here. All those speech and language pathologist wasted all of their time going to school for their career. If someone had told me I just needed to not give Karsen stuff until he spoke with words, well then he'd be talking right now, right?...... OH MY GOSH! Seriously lady! This is a first. I thought I have heard my share of opinions but this one.... wow! After a good 30 minutes later I realized I have grown some pretty thick skin. Two years ago if someone had said something like that to me I would have let it eat me up, take over my day and all my emotions. It didn't affect me that way at all, instead I walked away knowing I'm doing as much as I can to help Karsen. It's that simple. I knew. I didn't doubt myself. I think that's only something that can come in time. 
Besides the packed morning we've had a pretty low key summer so far. We still are going to speech therapy twice a week and seeing some great results but today was the first OT and PT session we had been too since 3 weeks ago. We've been spending lots of time in the pool and lots of time enjoying being home and being a family. Karsen's birthday is just a little over a month away, eeeek! First off, when did my baby decide to turn 3?!  Where did the last year go? I've been trying to think of what would be the best day for Karsen but I still can't figure it out. If we were to have a party there would only be a select few invited since Karsen doesn't do crowds well. I want  this birthday to be one that is amazing for him. He was so drugged for his first birthday, and his second birthday he had such issues with sensory it was a nightmare, this birthday is going to be great I just know it.



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