Thursday, October 22, 2009

My school feelings after week 7

It's been 7 weeks and aside from the routine and the illnesses, school is hard because we are stuck seeing normal kids every day.

 Adam attends a regular day care three days a week. There are no "special" kids. Every day I drop him off and walk him into school. He is tiny compared to the other kids and I say goodbye until I come back 8 hours later. 

Each day I get the same report: He does not eat lunch or much of a snack with the other kids, and really doesn't nap well. 

When we pick him up, other kids talk to me. They say "Hi" to me and say "goodbye Adam" and usually tell me random things "Do you like my sparkly shoes?" "My name is Ashley" "What's yours?" I respond and smile and ask them questions, but I am always left thinking that that's what Adam is supposed to be like. I have to talk to myself and say "No. this is him. this is what he is supposed to be. "

 Sometimes I feel angry and sometimes I feel sad. Sometimes it is just easier to stay away from "normal" kids. (We've been able to do that for 2 years) I also can't/don't eat lunch with other people at work who have toddlers who are normal- it's hard for me to chit chat. Hard to hear complaints, hard to always have to answer the regular "How is he? Is he getting better?" questions.  

It's easier to avoid people and live on my own special ed island. 

School is rough.

Tuesday, October 13, 2009

Baby shoes

Adam has a shoe issue. He did not walk until he was well over a year and a half and he hardly ever left the house, but his shoes were white DC sneakers. They were velcro and wide and comfy. They were sturdy and although he was not skating yet, he looked really cute in them.

However, his feet grew and he refused, I mean refused to wear any other shoe on his feet. He would scream, hold his feet and throw the new shoes. If you would hold him down and make him wear new shoes, he would talk them off, refuse to walk and protest using every method. He would begin non violent, then resort to violence in his protest. Sometimes he would cry so hard that he would then vomit. Vomiting is a big deal because we work so hard on getting food inside him. When it comes out, I'm so pissed, I'm like "damn there goes 250 calories". We really try to avoid losing food so if the choice is  health vs. shoes. Shoes win.

This would happen every time we would try a new shoe for about a year now. 

I am not suppernanny and I have to pick my battles. He had a hole in his neck and a feeding tube in his stomach, so the shoe thing seemed small. So the kid is monk-like, a little ocd, likes dc, whatever. We worked around it. 

He never really needed to wear sandals or boots because there were no sandy beaches or snow in his lifestyle. So our solution was to reorder the same shoe in the next size up.  He has those DC sneakers in a size 4, 5 and 6. 

Now I realized that his foot is bigger again (6.5) and he really needs to branch out a bit. I mean snow can be in his future and maybe rain. So over the weekend I took him to a shoe store. He is 29 months old and he freaked out. He wanted no part of the measurement (had to hold him) and once the shoes went on his feet, he freaked out and he is loud. 

I remained calm and used simple words. I held him. He cried and carried on and we both sat on the floor in Stride Rite for almost 25 minutes. During that time every time he was calm, I would say, "Ok, Adam let's get up now", but he would scream and shake his head and when I would pick him up to have him walk, he would lift his legs in the air and refuse to stand on his own feet. He is a great protestor, but I am tough, too. 

Eventually I got him to leave. He just got worn out and maybe bored sitting on the floor and realized that he had to walk in order to leave. As we walked through the mall, periodically he would realize his shoes were different and then he would fall to the ground and collapse. Refusing to stand. I would actually smile. It took us quite some time to get to the car. 

I think that I have a greater perspective and a tolerance for tantrums. Me, 10 years ago, would have been embarrassed by this behavior and probably would have yelled. I might have just carried the screaming fist beating child out. Not that that doesn't have it's place, but I would not have found any humor in it. Today, I found it comical, sweet and endearing. It was like , well, that's Adam. He's stubborn, but so am I. I almost laughed each time he would remember his shoes were new and he would stop walking. I would not have done that a decade ago.  

I was worried about getting them on him this morning for school, but not a peep.

Wednesday, October 7, 2009

We went away

We went away this weekend. Far away.  This was the first time we have gone anywhere really far on an overnight without the kids in almost 3 years. 

Prior to this we spent one night alone, but we stayed at the Hilton one mile from the house.We also spent a two night stay at the Borgota down in Atlantic City, but the kids were about 10 minutes away with my mom. Then about one month ago, we went to a wedding in Pennsylvania, which was about a two hour drive, but this time was FAR.

We flew to California for 2 days for a friend's wedding, so it was a 6 hour flight. If there was an emergency, it would take us, at a minimum 12 hours to get to the kids. I was ridiculously nervous. 

(even though in this picture, I appear to be non-nervous.)

Adam did fine. He stayed home, so we didn't have to pack him all up and transport all that gear. I also would have been worried that we would have forgotten something, if we brought him to my mom's. My mother watched him here. She is one of the few people who has dealt with the trach, mick-key feeding tube, and his ridiculously smelly diapers. See, when you are on a liquid protein diet, like Adam, your diapers are unlike any stench ever known to man. no joke.

Yet another issue when your child is like Adam. It's difficult to have people watch him. Many people say they are willing, few come through. Also those who are willing, are not really capable of all of it. They might not be cpr trained, weren't trach trained, or can't operate the feeding tubes. Sometimes, they seem like quick to panic. Sometimes, they try to learn, but to no fault of their own, it's difficult to deal with all the medical stuff. We found that some people are freaked out by abnormalities and it's okay to be. We just can't leave him with them for more time than it takes me to shower. Also we try to be consistant with PECS  and sign language. 

This weekend, Adam did have a fever. Mom called us, spoke to two of his doctors, we called them from California, and by Monday afternoon, he was all better. Maybe he had a fever because he missed us.

Now, 3 days later, Matthew has a fever, so it might be viral, not emotional after all.