I’m sitting here in our hotel room in Austin. Tomorrow morning is the beginning of the Texas Parent 2 Parent conference that I mentioned last week. I’m really glad to be here, because I am hoping to learn more useful tools to help us learn to navigate the “system” as well as learn to be more proactive parents to our “special needs” child.
Funny thing, I still don’t see her as “special needs.” Yes, I know she is. My head knows that. My heart still has a hard time wrapping itself around that concept.
Even after a horrible occupational therapy today that left me walking out of there somewhat defeated, I still just don’t see her as “special needs” in the classical sense.
Ms. Pat, Hannah’s OT, finally got to see how Hannah eats from a spoon and eats from a bottle. We tried to do it last week, but Hannah was just starving while we were in the waiting room, so I had to feed her then.
Hannah started getting upset, immediately as soon as I brought out the baby food container. So much so, that she started having difficulty breathing. I finally got her calmed down, and I was able to give her about 5 spoonfuls. Pat was able to notice that Hannah still tongue thrusts, and she doesn’t have the bite, swallow, and breathe reflex that she should have at this age. So basically, she is choking when she gets spoonfed. She then said “I didn’t realize it was like this. This is definitely dangerous for her.”
She wants us to stop spoon feeding for at least another month and just stick to bottles like we are doing. We can continue “oral play” with the hard licorice and hard pretzles, things that can’t be broken in her mouth. She then made the comment that “This doesn’t mean she will never learn how to do this the right way,” but my heart just sank.
I know how this crappy disease works. It was all I could do to keep my composure together as we left the office.
But for now, we are thankful we can still feed her by bottle. I pray that she is right, and this is something she will learn. But honestly, she has been trying to learn this for 7 months now, and we just don’t seem to be any closer.
But I still don’t see her as “special needs,” I just see Hannah.
It always seems one step forward, two steps back. I hope the conference is a positive experience for you.
I am sorry to hear that. I can only imagine how disappointing that was. I know exactly what you mean by just seeing Hannah. She is a very special child in an amazing sort of way and she has so much to deal with. I’m glad you’re ready to fight and it’s normal to feel down.
Going to the conference will be good for you… it’ll be strength and encouragement. Take care. Love, hugs and support.
.-= Petula´s last blog ..Practical gift =-.
With regards to OT… Remember, Hannah does things on her own timeline. She’s not going to be defined by the norm. Perhaps she just needs another month or so before starting to spoonfeed. Don’t let one setback feel like defeat. Remember how I obsessed over Livi not walking. I kept comparing her to other kids even though people, (including you my dear friend!) reminded me that Livi does things on her own schedule. Sure enough, she decided when she was 23 months that walking was a good thing. She got to her feet and was in perpetual motion after that.
You do know the progression of the G2/3, HOWEVER, you also know that Hannah is not typical in that progression. Wait to see if she suprises you!
Have a wonderful time at the conference.