More things to Feel Guilty About: A Confession

I figured out something a while ago. Something hard to admit.

While I always wanted to be a mom, I didn't always want to be an autism expert. An advocate for people with disabilities.  A behavior and medication guru. I know nobody's vision of what parenthood is going to be like aligns perfectly with reality. For some of us though, the reality is a lot further away from the fantasy than it is for others.

I know a mom with three typically developing children, who while loving being a mom, has never wanted to play with her kids. She just doesn't like children's games or toys much. Now that her kids are getting a little older and are teens, she is enjoying going to their basketball, football, and soccer games. But when they were little, she was annoyed with Barbies and Matchbox cars and Legos. She didn't want to play Chutes and Ladders or color in a coloring book. I think she did it occasionally, to appease them, but most of the time she claimed housework duties or other adult-type busy-ness, when the kids would ask her to play.

Some days, I find myself feeling similarly about many of the aspects of raising children with Fragile X and autism. I wouldn't have minded Barbies and I actually really like coloring, but I am going crazy from hearing the same Wiggles tune play over and over, while my son watches and shrieks, stimming to the same 20 seconds of "Here Comes the Chicken" 37 times.

Being the mom to children with disabilities is a part some of us are playing better than others.  And there are days, lots of them, when I get up in the morning and I just don't want to put the "Fragile X mom" costume on. I don't want to spend my time doling out medications, organizing schedules for therapy, and potty training 10 year olds. And yes, I do feel guilty for not loving every single moment of parenthood. 

Oh well. Soldiering on. Because you get what you get, and you don't throw a fit, right?

Birthday Blues, a Little

So, I started an online grad school program. And I work. In case you wondered what's been keeping me busy.

Sometimes I still can't believe there are two of them.
Tomorrow, the boys turn 10 years old though, and I feel the need to say something. I'm torn, because I want to be honest and pour my heart out, but I also want to be positive and uplifting, because being down doesn't help anyone. I hate it when I have to choose between truth and positivity.

Also there's the fact that my daughter is 12 now, and has access to the internet, and I know she looks at this blog (hi, sweetheart!). I want her to feel happy and positive about her brothers, and not feel the sadness I sometimes do. (It's really only sometimes. 99 days out of 100 I don't even think about it.)

Tomorrow the boys turn 10, and I spend part of the afternoon hunting for presents for them. I got them both body pillows. That's something I know they'd like and get some use out of.  They also like nightlights and flashlights, and some books, and DVDs, as long as they are DVDs of some Nick Jr. show, or the Wiggles. AJ loves Yo Gabba Gabba but Zack almost never lets him watch it. Zack knows how to run the remote now, so he usually decides what we are all going to watch.

AJ likes chocolate chip cookies, so I got a giant cookie for them.  Zack won't eat it, but Zack doesn't eat any sweets except Honeycomb and other cereals.  Once he ate Oreos, but now when I get them for him, he is uninterested. He likes Puff Corn. Can't really make a birthday cake out of that. So Zack is going to share AJ's big cookie.

For a couple of weeks now Zack has been asking for "Pa Wiggles." I don't know what that is. I have shown him a bunch of Wiggles videos we could order on iTunes, to see if one of them is Pa Wiggles, but he didn't point anything out specifically. He keeps looking up where the take-out menus are in the kitchen, because he knows we used to hide movies there, but there's none there now. No Pa Wiggles. I found some old Wiggles videos on Ebay and ordered them. Hopefully one of them is Pa Wiggles. (That's not Pa, as in, Ma and Pa, that's Puh. PuhWiggles.)

Everything Zack says is an abbreviation or an approximation of what he really wants to say, and some of the things he says are just indecipherable.

Zack still likes pink things. His most recent fixation was a pair of American Girl pants that he would try and shove over his arm. So for Christmas we got him a couple of pink shirts. He doesn't care about either one of them. He played with those pink American Girl pants until they were ripped.

AJ is very outgoing and has quite a few interests. He's easier to shop for. His very favorite thing is his red shirt that says "Radical," He wears it every day. I mean, every day after school he comes home and puts it on, and wears it every weekend. Luckily because I have twins, I have two of the "Radical" shirts, so we can alternate a little.

I saw on Facebook that someone got their son with Fragile X a stamp of their name - because they have such a hard time writing their names, it's fun to have that stamp and put their names on things. I don't know if the boys will care about that or not.  AJ might. It was worth a try, though, so I ordered them personalized name stamps.

Everybody has been asking me what to get them for their birthday. It's because they are impossible to shop for. They aren't like other 10-year-olds, they are more like three-year-olds with OCD. It's hard to come up with things, because Zack really isn't interested in anything that isn't on his iPad. Literally, everything he does, he does just to get his iPad back.

Birthdays are always hard. Ordinary days are great. They are sweet, funny little guys.  Every year on their birthday, though, the wide gap between them and other little boys their age gets more and more obvious. As 10-year-olds, they should be playing basketball like their sister, maybe on a traveling team that their dad coaches. They ought to be terrorizing the neighborhood on their bikes. They should be trying to convince me how much they both need a cell phone. It's no use ignoring this and not thinking about it. It's totally in-my-face, every birthday.

I want to be positive and say it gets easier, but some things never do. They've only been invited to one friend-birthday party, and it's another set of twins who are in their class, who are a little over a year younger than they are, and much higher functioning. AJ likes the birthday parties, Zack is totally overwhelmed.

I feel bad for feeling bad. Why can't I just accept them as they are? Why do I have to think about what they are not?

From last summer.

Their usual spot, and usual activity.

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