Saturday, April 28, 2012

There's a great future in plastics.

I am quirky and I certainly don't know where all my different likes and dislikes came from. Well, I don't know where most of them came from. Some I can place, for example my love of the smell of tobacco. It makes me feel safe and like a 9 year old. If I'm in a main street kind of town or shopping in a NewHope-esq place, and see a tobacco shop, I must immediately enter and hear the bell chime. Taking deep Yoga stomach protruding inhales and exhales of tobacco scent is calming. I almost always buy an empty tobacco box, as demonstrated by my boys' containers for gogos, tech techs, army dudes and baseball cards. These might not be the safest toys, but my boys really do hoard little stuff and they are great stuff holders. Also it makes me feel less freak-like for entering the store just to do some breathing poses. I know where my love for tobacco smell comes from. My grandfather, my Dziadzi, smoked a pipe. I freaking love that smell. I instantly am transported back to my grandparents' house for a Sunday dinner of roast beef and mashed potatoes.

There are two big quirks that Adam has: a love for plastic and sand crabs. Sand crabs? huh? Let me explain. When Adam was born, he was uber- tiny. Like a pound. In the beginning of his life, we weren't allowed to hold him. And in the NICU, they would place beanbags on him while he was in the little incubator, which we affectionally (and quite overwhelmed with medical bills) nicknamed his "million dollar condo".  I suppose this was to keep him feeling safe, and warm and more comfortable. He would sleep all the time and they would pose his limbs around these bendy soft tubes and place beanbags on top of him. Here's a scary looking picture of him, the heart fabric are actually beanbags on top and around him.
What happened as a result... well, when Adam sleeps, he must dig himself into tight spaces. In his crib, he would wedge himself in the most dangerous corners and when you held him, he would dig his arm into your side and tuck it under your shirt. As he got older, and now in his big boy bed, he sticks his legs between the mattress and the wall, often wedging his body in "the cave", this tight spot. Most nights he gets up and climbs into bed with us, often between 4 and 6 am. Once in bed with us, he wedges his limbs underneath us, I am so used to this, that in my sleep, will feel him digging into me with his foot and I will strike a modified side plank yoga pose, while he slips under my legs and my back and sometimes will dig his arms into my side so hard, I feel I will have internal bleeding. We have affectionally named this "sand crabbing". If I wake up and yell, "Ow, Adam, stop hurting mommy." He replies, "I not hurt you, I just sand kwabbing" Ok, I sigh and I place my back over his legs. On a bad night (where Phil ends up half on the night stand and I wake up horizontally across the foot of the bed), we remark while yawning, "Adam was a bad sand crabber last night".

Besides crabs, Adam also loves plastic. Again, this comes as no surprise. When he was born, as seen above, plastic was everywhere. When he got his tracheostomy he had a plastic mask that would be around his neck, pumping in humidity and oxygen. You can see him doing tummy time with his plastic mask and tube.

In that picture, it's a bit too loose, but, his tube and mask learned to crawl and walk with him. He would go to sleep, hands wrapped about that tube, which we named, not so cleverly, "tubey". He and tubey were buddies. If you moved him while he was asleep, he would clutch that tube as quickly as possible and rest his hands around tubey. Of course, it was enabling him to breathe and survive, so it's understandable. 

Adam has a few stuffed animals and blankets and such, but just today, Phil and I went on a run. Phil was pushing Adam in the jogging stroller and Adam asked if we could lower it so he could nap. He also asked if we had his batman plastic figure, so he could hold him while he slept. This is normal for him. He sleeps with a hard as..., well, hard as plastic, Buzz Lightyear and will be known to take a vehicle or two into bed. 

So, while my boys will grow up with many quirks (as we all have), I find it interesting to know exactly where these two came from and it's kind of cool to see how events directly from infancy and birth have effected him firsthand as a toddler and preschooler. That being said, I sure hope it doesn't develop into an adult love for life size mannequins that he weights down and sleeps under. Although, if it does, I'll know just where it came from and will, of course, pay for overwhelmingly high psychiatrist fees. 

Saturday, April 14, 2012


When my oldest was younger, we were always having playdates. Matthew would talk about kids in his daycare, we knew their names, weekends filled with adventure playsets and playrooms with wall to wall. Matthew went to a ridiculous number of birthday parties and that led to more friends and more playdates. It was like a revolving door of chuckegymboreebouncehouse fun for his first six years.

Adam however, in stark contrast, has very little playdates. The playdates we do have are really playdates for me, when I am getting together with my friends who happen to have kids ranging in ages and we throw them all in a room while we laugh and catchup. Adam's birthday party invitations are mostly ignored. I see them and immediately groan. An invitation to a chuckegymboreebouncehouse party equates to illnesses requiring nebulizer treatments and an antibiotic. Matthew spoke about friends and shared school stories, but Adam doesn't know any kids in his school. We ask him for names and he will tell you he played with his "best friend", but " I no member his name".

There is also a disconnect, because he attends two schools, it's hard to be involved in one school, and with two, I think I just rationalize with, well, I'll get involved when it's 'for real'. When he's is elementary school.

One school, the special education school, he attends part time and based on the flyers that come home, no one must work, but me. They have fairs and luncheons and tea parties and book sales and petting zoos, that are all during the day. I envision mothers with cool hair, coach sneakers and stylish totebags volunteering at these functions, meeting other mothers and having their special education children connect and flourish.

The other school, the regular daycare school, is difficult because he is only there in the afternoons and maybe it's his part time attendance that fails to connect us, but the other kids seem so 'normal' when I go to get him. They speak so perfectly and I can't help but feel as though they might not play with him. The kids can't wait to tell me what Adam did that day that was inappropriate. Several kids will run up to me when I get there and tattle on Adam instantly. "Adam's mom, Adam hit me today" or "Adam had to say sorry today". The teacher shushes the kids and shoos them away and then occasionally will mention something to me, but often she just smiles and knows that it's not major enough to warrant a conference. Communication does impact relationships and I imagine those kids are like Matthew, playing with the kids they see all day long, not mentioning to their mothers that they need to play with  the kid that comes half the day and talks weird and doesn't always listen.

There is this one kid, a boy, who I discovered takes the bus with Adam in the morning to the special education school. In speaking to Adam, I learned this fact. My face lit up when he told me that his friend on the bus also played with him at "afternoon school" in the sandbox. Could it be true? Another special kid, perhaps this kid could be a friend? a playdate? I wrote a note to the mother of this child and gave it to the teacher. Then drafted a second note. Yes, we had his name completely wrong. Adam thought his name was something else. Right boy, wrong name.

Daniel's mom and I tried to set up a playdate for weeks via emails and texts. Yet again, another obstacle to our world. When you work, and your kid has delays, there's a whole lot of appointments and some days, you think it will work, but your kid feels otherwise. Finally she and Daniel came over. It was a fabulous two hours.

Daniel's mother is from South America and had many questions about the education system here. Her son's iep meeting was coming up and she had questions about what it meant and what to do and what options were open to her. I shared my knowledge and answered her questions honestly. We discussed and shared how we as mothers blame ourselves for our children's disabilities, shared the obstacles within our families and cultures and discussed that this disability thing is difficult to manage along with being a parent of a preschooler. We complained about parents bragging and their fake complaints, we shared stories of our children's difficult toddler years. Tearfully we talked of dreams for our sons and how far they each have come. We were hugging and thankful for this connection when it was time to leave. The boys played wonderfully, they had few issues and were adorable in their play, it amazed me that they connected so well and seemed to be on the same page laughing at jokes that only the two of them understood.

There needs to be more of this. Yes, there are clubs, groups, social networking sites for all this, but in reality working moms of special education kids are freaking busy. We are busy blaming ourselves for the disability that most free time we have, we are overcompensating trying to fix the disability with play therapy, letters, sounds, reading books, and teaching our kids or we are taking a mental and physical break and escaping from the madness of it all.

I promise to try harder to find more mom playdates and to connect my son to more friends. It was one of the best two hours of my week.

Thursday, April 12, 2012

Damn Weigh-ins

We had off for President's Day, so obviously we made as many doctor appointments as possible. One was our monthly visit to "Eating School". This is where Adam sees a nutritionist, doctor, nurse practitioner, and behaviorist.

At February's visit he lost weight.

They said to change nothing yet, just keep the night feed the same. It doesn't mean anything. It is just one pound.

At March's visit (which was really April, because I can't take even one more day off of work and so the appointment was on Easter Monday) he did not gain any weight. He didn't lose, but he didn't gain.

That's no weight gain in 3 months.

We have to increase his night feed.

This depresses me for a few reasons.
1. It's not moving forward, it's not closer to removing that damn Mic-key button. I am so freaking sick of people asking me when it is coming out. stop asking me. I don't have a fucking clue. I am doing the best I can. Back the fuck off.
2. I know that the longer it's in, the more dependent he gets with it.

I am trying to stay positive, like self talking that we can bulk him up. He is having surgery this summer, so this way, we can pack on the pounds and all. He's still only four. Look how far he's come and all that smiles self-positive upbeat talk, but really?

really it is going back a step and that sucks.