Little J's Journey: His Joy is My Joy

Four new blog entries in a week?? I'm on a roll!!

Today I can honestly say was one of the BEST days of my life! And when I woke up, I had no idea what Tuesday, January 6th had in store.

Want to know why today was one of the greatest days of my life?

Because it was one of Jayson's greatest days!!

We did not have any fabulous plans for today. A missed doctor's appointment, Mom working from home and J playing with his new Playschool Barn iPad game. That's about it. But I received a call I had been waiting for. Jayson's SCHOOL principal gave me a call!! Jayson turned three on December 15th, which means he exited the Early Intervention program. No more therapists coming to our home; no more play groups; no more horse therapy. The time has come for Jayson to enter school. I haven't been excited about it at all. I've been dreading it really. It's new. It's different. It's a risk. I'd rather keep him home safe with me, even if he can't flourish as much. I just want him safe. Well we found a good option for Jayson-- Home and Hospital through the school district. A certified teacher from Jayson's school will come to our house one to two hours a week to work with him one on one on his IEP goals. This will give him time to finish healing from this past surgery, time to heal from getting his metal removed from his head and perhaps time to heal from a spinal surgery if he needs one. Then, when he's ready, he will go to pre-school.

Once he starts school we have some options. He can attend a regular ed classroom and be integrated, or he can attend a special education classroom in a typical school, or he can attend a special school for kids with special needs. At this time, we have selected the latter-- a special needs school. Jayson will be attending a school called Horizon. There are two nurses on staff and at school at all times, a PT there 2-3 days a week, an OT there 2-3 times a week, assistive technology, chairs, bikes, a therapy pool, a sensory room, and all sorts of adaptive toys and devices! Everything is handicapped accessible, including the large playground. The nurses will give his tube feedings, his meds, monitor his pain and/or seizures, change him and communicate any health concerns with me. At the special needs school there are particularly strict rules about germs, illnesses and cleanliness. It is pretty clear why we have selected this special school for Jayson to attend.

Well today the principal called and said we needed to schedule our IEP meeting. Things have been a little slow and I have felt a little out of the loop, so I greatly appreciated her call. She mentioned it would be convenient if I could come by soon to register Jayson and fill out the paperwork. Even though he will be receiving Home and Hospital services for a couple of months, he needs to be registered at the school. I decided to go ahead and get it done today. I was both nervous and excited to see what Jayson's school would look like.

Jayson seemed excited from the time I got him out of the car and he was staring at real life big, yellow school busses! I put a mask on his face and we headed in. I entered the office, told the secretary who I was and was handed the paperwork. Next thing I know the principal had come out to greet me; she grabbed Jayson's future teacher out of her classroom to come meet Jayson. They chatted with me and the principal apologized for having to deal with an emergency, but asked if it would be okay for Jayson's classroom teacher Mrs. Webb to take us around on a tour of the school. I was pleasantly surprised and so excited to see Jayson's school!!

I was able to meet the staff of Physical Therapists, Occupational Therapists and Speech Therapists. They all knew Jayson by name already! It was crazy! I saw their rooms where they worked and was able to observe as they worked with children. We went into the sensory room and Jayson thought it was amazing! Lastly we went into the classroom, where Jayson decided he had enough. He started leaning over and pulling at his wheelchair lap belt. He wanted out of there! I let him out and he literally jumped down and took off, pushing me out of the way as he headed towards the train table. He didn't spend long there, because then he found the slinkies, the playhouse, the books, the cause and effect toys and then his favorite-- a cool light switch toy. He was in heaven. I have NEVER seen him like that before. He was left, then right, here, then there. Pulling toys out here, throwing toys down there. He was a terror, and I loved it!!!! He soon found his way over to the teacher's desk and drawers and then he discovered one of the other kids was holding an iPad. Uh oh. Yup, he tried to take it, was intercepted, so he just sat on her instead. He was going up to all of the other kids in their wheelchairs, checking them out, trying to climb up and trying to spin their wheels. He finally noticed the Smartboard and the fact it was a ginormous tv playing Signing Time! The crazy thing is, it only held his attention for a minute or two because then he was off to explore more things. He wandered around until he found a green cube chair, just like what we have a home. He turned himself around and took a seat and actually listening for a minute or two of the lesson. He went around to the different teachers, aides and nurses and tried to sit on them, show them what he wanted or snuggle. He stole every one of their hearts today. And honestly, he was so dang naughty!!! He was everywhere and into everything, and it suddenly became so clear what trouble I'm in for! (And how much the teacher is going to cuss me for never teaching Jayson the word "no") I was on cloud nine watching my son have the time of his life. He was interacting; he was exploring; he was touching; he was tasting (yes I freaked out); he was walking; he was crawling; he was looking and he was listening. I . . . well, I was just amazed. I looked at Jayson like I had never laid eyes on him before. I had never seen him blossom like he did in that classroom. I know a large part was due to the past surgery, and another large part was because this was the right place for him. I knew it in an instant, because Jayson was happy and comfortable. I knew right away that everything would be okay. My millions of questions and concerns that were so critical an hour ago just melted away. Jayson needs school; that's all there is to it. Everything else will work itself out.

Jayson peed through his pants so I had to take him to the bathroom to change him. First off, imagine an adult sized electronic diaper changer. . . yes, it was a dream come true!! But Jayson screamed the whole way there. Like terrible twos meets threenager scream... with the kicking and the hitting and the yelling and the scream that says, "She's beating me!" All of it. And it was marvelous! I got him changed and we started walking back to the classroom {yes, I just said WALKING} and J laid his eyes on an adapted tricycle. He JUST learned about tricycles because his grandpa bought him one this weekend. He walked over to it and wanted a ride. I intercepted and tried to guide him back to the classroom. Holy. Moly. Batman. It was limp-noodle city and psycho toddler was back with the kicking and the hitting and the screaming. Oh, and the giant alligator tears! And I smiled from ear to ear as I hauled my tantruming toddler like a sack of potatoes over my shoulder back to the classroom. Once I opened the door, all was well again. He pushed me away and walked right over to his green cube chair . . . and then the bookshelf, and then the teacher's desk. You get the picture.

We stayed until the end of the school day. I had no choice. My son is the boss of me. Okay, well, he has my heart. In reality, Jayson's sweet teacher invited us to stay since I had paperwork to fill out anyway. I'm so glad she did. We said goodbye to our new friends and Jayse cried lots of tears as I placed him back in his wheelchair and cinched up the belt. I got down on my knee and told him right in his ear that we would be back. I promised him. I promised myself. We would be back.

Today was a miracle, and it was one I really really needed. I have been protecting my fragile little baby for three years. I have fought battles no parent should have to fight, and have feared losses no parent should have to contemplate. I have been terrified with the thought of a big yellow school bus picking up MY baby and carrying him off to anyone but ME and anyplace but HOME. Not anymore. Not today. Today I'm not terrified. I was able to conquer my fears, and it was simple really. All it took was the look on my child's face that told me he was happy---really, really, happy--- and everything was going to be okay.

Yes, THAT look.