I've had this post in my heart and head for a while. Finding the time to put it on here is another story!
Asa is officially graduated from Early Intervention. Well, I guess technically he won't be until he turns 3 on Thursday but for all practical purposes he is done. Today was our final appointments with the therapist and teacher we have know for most of his 3 years! And I was a big girl with no tears!
I remember getting the phone call that Asa had been referred to Early Intervention and I had no idea what that meant or who that was! I was told that he was referred since he had a stay in the NICU after birth. They wanted to come out and evaluate him to see if he qualified for services. Again, HUH? I argued back and forth and finally agreed that they could come out. At this point Asa was little, tiny really, only a month old. We didn't have any clue of his delays. He was difficult and screamed but no signs of other issues. By the time we got to the appointment date, I realized something might be up. I'd tried to tell his ped but got nowhere. So the EI coordinator came out and we did an eval and Asa did qualify. And that is when I made new friends!
There is no handbook when you are sent home with a special needs child. And honestly, in my life I'd never known any kids with disabilities. I was seriously clueless! These teachers and therapist were the first people I'd met who had any idea what was laying ahead for us! I'm surprised I didn't scare them off by clinging to them for my life at first!
Katie with Asa at Chick-fil-A for Mito Awareness night
Katie was Asa's EI coordinator. She is a hoot!! And I love that cause she'd have to come out and we'd review Asa's goals and therapy and adjust if needed. I never felt intimidated or nervous at these meetings. See, if I wanted more therapy or less therapy or different therapy, it was Katie who then told everyone what we needed. I never felt like I was gonna get in trouble or push my limits by asking for more. In fact, I really don't think I had to ask too much. Mostly, she looked out for Asa and she made suggestions of what he needed! But she always kept things light and fun and crazy! You need that in life!!
JoBeth at the "graduation" his summer.
JoBeth was Asa's EI teacher for the last 2 years. She quickly turned into Asa's favorite friend! No offense to the others but I think he liked that she came to his home turf!! She'd knock on the door and he'd squeal with delight, kicking his feet! He was so funny with her! These last few weeks we've been going to the daycare across from the therapy center so Asa can play with JoBeth and be exposed to other kids. JoBeth is probably glad for the swap so she didn't have to drive all the way out here and dive into our crazy house of never ending unfolded clothes and toys everywhere!! JoBeth's job was to play with Asa. She did some walking, some drawing, sensory play, eating, she just played with him anyway he was willing!
EI would pay for Asa's PT, speech/feeding and OT since insurance doesn't pay (or not enough in some cases). They set us up with our A-team of therapist! I'm not sure if how we got such a great team but I have no complaints! The fact is though that we've worked with several of the other therapist at the center and I don't think you can get a bad team!!!
Asa and Ms. Nancy
Asa doing what he does best with Ms. Nancy....the opposite of what she wants!
Asa started PT at 3 months old! That's little!! And it was in the midst of all the craziness of Asa's first year! He screamed all the time! He had terrible reflux and would arch all the time. He had no head control, no tracking toys, no desire to track toys and he puked all the time!! That's when we met Ms. Nancy! Bless her heart!! He was a miserable baby and her job was to make his body move in ways it didn't want to move! He wanted to arch back and we spent months just trying to get him to curl in! Talk about inchstones....this is an area where Asa has moved at a snails pace! I guess that is to be expected since it is the area he is most delayed. Not only did Nancy have to deal with a difficult Asa but she also had to deal with a crazy moma!! I know I asked a million questions! I still do but I try to plan better now! I'd ask questions that Nancy had no answers for like "what does he have?" and questions she wasn't supposed to answer "who is the worst pediatrician here?"! Really, she was in a tough spot!! Nancy was always very professional though! She never let Asa get away with much! If he wouldn't work on the skill she wanted, she'd just switch to another skill. No time off for pity parties here!! Don't you love it! Here lately though she started allowing time for snuggle breaks!! I think Asa finally got to her! Nancy has been a blessing in letting us borrow equipment, get our own equipment and giving advice on equipment. You can't imagine the stuff that is available and the price of it! We've also had some fun with Ms. Nancy! Asa has been the model for a class she teaches. He has helped on a study she was doing to get her doctorate and recently I videoed them for a presentation she is putting together. I told her he was willing to play anytime!
Asa with Jill at "graduation" this summer.
Nancy led us to Mrs. Jill because Asa had gotten a NG tube and there was G-tube talk. Jill's job was to do feeding therapy so Asa would avoid the G-tube. Massive fail!! Just kidding!!! Only God himself could cure that boy's feeding issues! Boy did Jill try though. I remember our first consult with her at 6 months old. I was holding Asa trying to get him to take a bottle all the while he wormed and squirmed and screamed! Seriously, I'm surprised they all didn't just smile at us and show us the door! Jill added speech once Asa got to the point he should be making some. Again, he still has no words so, FAIL! I'm so kidding!!! I love Jill to pieces!! I've often told people that Asa's insurance is paying for my therapy! And Asa has a pretty good receptive language he just doesn't use his mouth to give us words. If Nancy had to endure screaming Asa so did Jill. He hated eating and that was her job. Seriously, I would have shown us the door. Jill has stuck with him though and this spring she taught him to drink with a straw! I promise you that was life changing!!!! The room brightened and angels started singing! That is the only reason his is drinking his Pedisure now instead of tubing Pedisure! He is still so inconsistent with his eating and food choices but Jill never quits either. Tuesday was a happy day because I found out Asa can still go see Jill for feeding therapy since the school system doesn't offer feeding therapy. Happy Day!!
Jill at Chick-fil-A with Asa. His normal reaction of squealing for Jill! And she wasn't even trying to feed him!
Mr. Jim at Chick-fil-A
Asa started OT at 9 months. His original OT now works for the schools and will be his OT at school! Yay!!! When Erin left we started with Jim. Again I drove Jim crazy with my questions until he kicked me out of therapy! Kidding, again! Asa got so clingy in OT that it really was a better idea for me to not be in there. Asa did much better without me! Jim worked alot on sensory stuff and touching things, cause and effect toys, the computer. And Asa's most loved activity....the swing! Jim let Asa borrow the little power wheels that had been his own kids. And OMGoodness, this sensory stuff is slow going too! I'm not that patient! I want to offer a texture twice if he refuses it move on! If only it was that easy! Jim introduced the brushing technique we use and the music therapy we've started. I have to say, Asa is handling much more stimulation than before so something is working but you have to be so conscious of the work! Jim is so patient!
Beth at Chick-fil-A
Those are his main therapist but like I said we've worked with several of the others at the clinic. Beth filled in for Jill when Jill went on maternity leave. I think there was almost a bargaining war on who would get Asa after Jill came back! Beth came to our Chick-fil-A event and let me take her pic....little did she know! LOL
Sara with Jill's little girl, Mary, at Chick-fil-A
And Sara!!! Sara is an OT but has never been Asa's OT. She is beyond special though!!! She is so talented and she has blessed our family by sharing her talents! She is an amazing photographer and offered to take Asa's pictures this time last year. Guess what, she has offered again and we are meeting on Monday! Her talents don't stop there though. She can sew and bake and is just amazing! She was behind getting the sorority girls to work at CFA a few weeks ago. It is one thing for Asa's other therapist to do nice things for us but Sara goes out of her way to help out! Talented and generous with her gifts!!!
As a final word, they will all die of embarrassment when they read this post! They are all so humble and generous! They have all tried their best to bring out the best in Asa! I've learned a ton and feel privileged that they have let me sit in on his therapy so I can learn too!! I'm sad to move on to this new adventure called school. I know Asa will be fine. And his new therapist are friends of his old therapist. But the fact of the matter is that I've lost my playdates!! I'm thinking maybe they need someone to come clean mats or change batteries and ask a million questions! They've got my number, I'm sure they'll call any day now! HEEHEEHEE
Thanks guys for all the work you've put in for Asa. All the caring!! I got them little potted plants and wrote "Thanks for helping me grow!" on them as a gift from Asa. And I mean that, you have helped him grow. You have helped me grow. You wouldn't believe all the work that goes into teaching a body to work that doesn't want to work! But seriously, by answering my crazy questions or giving me advice, you have given me confidence and assurance to be the best mother I can be for Asa.