Patrick’s first day of preschool


I can’t believe it’s been a whole MONTH that Patrick has been attending preschool! “Koo koo” (School) and “Aaa” (Ann – pronounced with tongue protruding) have quickly become a highlight in Patrick’s week.

He started the last week of November after a long wait to get the medical plan for Patrick written. It took so long that I quit preparing so I wouldn’t get nervous and then had to make a mad scramble to finish off supplies the night before school. (In case of emergency, we keep a gallon sized bag of central line supplies and another gallon size bag of g-tube supplies, an epi pen and three bottles of medicine in the school nurse’s office… not to mention the backpack full of diapering supplies that Patrick carries to and from school. He also has a 20 page care notebook, including a detailed emergency plan for every thing I could think of that could go wrong.)

The first day, I got to go to class with Patrick. We went first to the nurse’s office so I could train the nurses on all the supplies that Patrick carries and the most likely problems with each.

Then, his teacher came and got him so he could play in the sensory room while I finished up. The sensory room is a room filled with lights, sounds, cushions, a ball pit, ramps and slides and other fun things. Patrick was nervous at first, but loving the remote control of the lights by the time I got there. Patrick’s class goes to the sensory room or the gym for recess in the winter so that the cold doesn’t affect their health. After seeing this room, I think the other kids are the ones missing out.

After the sensory room, we went back to class for circle time and then skills practice. They were working on folding that day, so Patrick folded a rag and then a piece of paper. (Now he thinks he can fold laundry.)

Then, his group switched over for speech. Patrick and two other boys sat at the table and took turns playing with balls that had toys hidden inside, while learning to ask “I want”. It was a simple activity and Patrick preferred to throw the balls, which made the other boys throw the balls, too. But it really impressed me to watch because I realized that the other kids talked like Patrick talks. In fact, as I watched the rest of the day, the other kids played like Patrick plays.

For the first time in probably his entire life, Patrick was among peers. Kids who weren’t ahead of or behind him. Just with him.

They did toy time next and Patrick’s aide (yes, he has been assigned a designated aide to stay with him and protect his line in class) got a good lesson in how quick he can be and how much you have to watch him. Meanwhile, the teacher went out of her way to make sure that Patrick didn’t just play alone, but was invited to play with the other kids, too.

Next was snack time. They had pudding, which was a good chance for me to demonstrate how careful we have to be around messy milk products. Patrick had fun eating pretzels at the same time as Teacher Ann.

And then, as eating always creates a need, we headed to the changing room for a diaper change. They called the entire nursing staff, the teacher and all the aides into the room so I could show them how to use Patrick’s diaper creams. (Good thing Patrick isn’t shy or modest yet.)

Then, the pumps alarmed with air in the line so I got to show the nurses how to handle that, too.

And one story and circle time later, it was over.

Patrick’s teacher warned me that it would be hard to leave the next time so I’d better plan distractions.

Good thing it was Christmas time because although it was a treat the next class day to go get a haircut for the first time in 3 years without needing reinforcements… that didn’t take long enough, and I ended up killing time by Christmas shopping and writing letters.

In fact, our pocketbook probably feels that adjustment a bit, as Christmas shopping is how I got through the next several class days. I didn’t dare go home for fear they’d need to call me back.

It was a few weeks before I finally made it home, only to walk in and find Patrick’s diaper kit in the living room and have to run it back.

But I am proud to say, at long last, that I am learning the joys of that time at home. Cleaning is so much easier and my house, now that Christmas is past, is beginning to feel like it’s in order without major effort to get it that way.

Patrick is blossoming in school. I don’t know a lot of what he does there because he doesn’t talk enough to tell me about it. But last week he brought home two sheets of paper covered in obviously very guided examples of the letter F. And now Patrick is trying to pronounce that sound in his words.

He loves checking books out from their classroom library. And he loves P.E. “Ba Aaa” (Ball Ann) is one of the few things Patrick will tell me about his day.

And so far, his biggest medical emergencies have been one leaky diaper and one closed central line clamp that earned him a trip to the nurse’s office. (Maybe one day they’ll be brave enough to silence the alarm and check the clamps before making this journey, but who knows.)

A month of school is really only about 9 days so far, so this is all still new and we’ll all get smoother as things go along.

Any way it goes, Patrick loves school. And I love that he gets the experience. There could not be a school or class or teacher better suited for him right now.IMG_3113

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