Archive for June, 2008


June 30, 2008

I finished knitting my first sweater this weekend. I decided to start small…well, small in size. I knit Toby a sweater. I made it 18 month size, so he can wear it this fall and winter (hopefully, if he doesn’t grow too much). I wanted to make him model it, but who wants to wear a sweater in the summer?



June 28, 2008

Regular readers of this blog know that if there is one dirty word around our house, it starts with “T” and ends with “eething”. We thought Ben was Teething FOREVER….every time he was cranky that first summer we attributed it to teeth coming in, and we were always wrong wrong wrong. As with most things, however, Toby is another story all together. My poor guy has four big bumps on his gums, drooling has increased tenfold (if that’s even possible…this kid is a regular waterworks) and we are fussy fussy fussy. Don’t want to eat, cuddle, play, or do pretty much anything in the normal routine. The “best” part of all this is that if I understand correctly, this could be just the beginning and we’re really in for it. We’re using lots of frozen fruit, frozen washcloths, tylenol (only at night…if this goes on forever I don’t want to overmedicate him). He also has a low grade fever. Poor little tyke. Nothing to do but wait it out and go on. This too shall pass.

Last weekend I registered us for the Buddy Walk. More details will be following, I have to do this little by little. It was harder than I thought it would be to make the team page for “Ben’s Buddies” and get that whole ball rolling. Seems like even though it’s been four months, I miss Ben more now that I have before. It’s been a hard couple of weeks. We renewed our Cell phone plan today, and I got a new phone. I have pictures of Ben on my old one, and no way to transfer them to the new one. I know, I know, they make ways to do this. But I have an old phone that I just upgraded, and I can’t justify paying to transfer three pictures. Not when we have about 3,000 (no joke) on our computer of Ben. But still, they are pictures of him and it made me a little sad to realize I have to let them go. I have 3,000 other smiles, but letting these few go is still very very hard. Not to be mellowdramatic, but I don’t get any more, I’d like to save the ones I have.

I have been wondering for a few weeks now how the Buddy Walk will feel this year. It already feels bittersweet. I suspect it’s going to be a difficult day for us, but a good way to remember Ben nonetheless.

In other (happier) news, we went to a birthday party for my Grandpa last weekend. 90 Years old! Amazing. Shots of Toby hanging out with his adoring girl-cousins are below. We’re heading to the Cabin (belonging to some friends of ours) for the fourth, and looking forward to getting away, then off to the Farm for the family reunion. July is always so busy. Oh, and Scott turns 30 soon, but you didn’t hear it from me. 🙂

New pictures are here

Adventures in eating

June 11, 2008

A few weeks ago I was having a conversation with a friend about having a child with “food issues”. How exhausting it is…how you worry…how all of your well meaning friends give you advice to “just try this or that” when you know in your heart that your child will not eat ANYTHING. Some kids have issues because they are picky, some because they don’t like certain foods or will only eat others. Ben, as regular readers of this blog will remember, had issues with food texture. He had very specific requirements about what his food should be like…mashed, soft, pureed…soft chunks were not okay. Goldfish were. He liked split pea soup and meatloaf, but wouldn’t eat mashed potatoes. As he grew it went from texture issues to more “toddler picky” issues. It was exhausting. It made me cry sometimes…when he was 18 months old and I was baking yet another squash so that I could make him some more baby food.

Toby, on the other hand, is a joy in the kitchen: check it out

It’s not PC, it’s just polite

June 10, 2008

One of the things I learned and reflect on often after having a special needs child is “political correctness”…it’s kind of the butt of a lot of jokes. I’m thinking about it today after a conversation I had with some people (friends of friends) that I met today at the weekly tuesday lunch.
Some people who have children with special needs, are handicapped in some way themselves, or face any number of challenges in this life view it as their mission…their urgent mission…to educate the world at large about the terminology used to refer to a specific condition or state of being. In the Down syndrome community, it is acceptable and “correct” (I hate that word) to refer to a child or person as a “child (person) with Down syndrome”. Saying a “Downs kid” or a “Downs baby” is not only kind of weird, it’s not really correct. Down is the name of the doctor who discovered Down syndrome (the state of having the syndrome discovered by Dr. Down)…so if you are saying “Downs kid” you are implying that my kid belongs to Dr. Down…who is dead.

What am I getting at? Well, the way I see it, there are three kinds of people in this world. The first group is probably the largest…I think that the general population is so beaten over the head with the “proper” way to act and the “right” thing to say that it almost makes them scared to approach anyone who is different from them for fear that they’ll say something offensive. I hold as one of my basic beliefs that people are really basically good and kind, given the chance. So when someone comes to me and we are having a conversation and they use the term “Downs kid” or “Downs baby” I usually don’t correct them. I DO make it a point to use “child (kid) with Down syndrome”, hoping they’ll pick up on the vernacular. I would prefer that people try to treat each other more kindly, recognize that we are more the same than different, and not be afraid to ask questions. I don’t want them to be scared, or feel pity for, or in any way look at the next person with DS that they see because I jumped on their case about terminology. And, as in most cases, the people who are the exception to this rule are in my family, and I”m amazed they still claim me as their own because I’m cranky about any number of things…including this, sometimes….I think they have to deal with me and my attitude sometimes; although I suspect there have been times my mom would have liked to have sold me to Gypsies after I had been particularly snappy to her. But I digress.

I think there is a very distinct second group who is similar to the first, with one major difference. A large segment of the population simply grew up during a time when people who were different were treated differently. I make a very concerted effort to use the proper terminology, but you can’t change someone who is eighty years old and grew up in a different time….they say things that are “politically incorrect” because at one time it was acceptable in society…

The third group bears only one or two sentences, and then I’ll move on. Some people are just stupid. Ignorance indicates you don’t know better, stupid indicates you do, but choose not to do better. So if I see someone calling my kid (or one of my friend’s kids) the “R-word”, or “mongoloid” you had better believe I speak up, and usually not in a nice way. Some people are just mean. I have heard the argument (usually from my students, long ago, before this really hit home with me) that they don’t use the word “retard” in a rude way, that they are just joking around. I hate that word. It’s mean and vindictive. I could go on about this third group, but it really just hikes up my blood pressure for no reason. Let’s move on and leave the stupid people alone.

I guess I”m kind of in the minority with the first two groups, I know lots of people who speak up and correct other people. I know lots of people with lots of clever come backs. I could go on all day about the things people say and assume about children with DS, and how parents handle it, but that’s not the point here. I choose to look at it this way. I had a conversation today with a guy who said to me something like this: “I haven’t known a lot of Downs Kids, but I understand that there is some difference in severity with Down syndrome, is that true?” So yeah, I could have said to him “Well, it’s children with Down syndrome, first off….” and finished my answer, but you know what? The guy probably would have felt like such a jerk he would have missed the entire rest of the answer. And that defeats the real purpose, the real education that can happen here, which is to tell someone who really wants to know about a segment of the population that I hold near and dear to my heart. So I told him that yes, there are differences in children with Down syndrome…that just like some typical kids like baseball and some like English, some are good at math and some at soccer, children with Down syndrome have strengths and weaknesses. Once you have DS, you have it…there is no “little bit” or “not having it that bad”, because everyone has that extra chromosome…but some show greater physical delays, some greater learning delays. You know what? We had a great conversation about Down syndrome, about what it means, and about what people with DS are like. I loved it. We talked about Ben, we talked about what a gift he was. And at the end, I think we both felt good about the conversation.

Let other people be the word Nazis. I’m going for what matters. I’m going for the substance, not the label.

Returning to our regularly scheduled

June 2, 2008

So many things have been happening, and I hope that I have time to blog them all. We have been so very busy lately, and Toby has been doing so many new things! First, before you ask, we have indeed returned to our regularly scheduled…uh….schedule in the diaper department. Toby is feeling much better. The fussiness while eating seems to have been due to the overabundance of prunes…probably caused some stomach cramping. As soon as they were out of his system, Toby felt much better. Someday he’s going to read this, and the previous entry…someday when he’s about, oh, fourteen or so. And he will die of embarrassment. And I will know I have done my job as a mother.

Also in the input/output department, we have started solid foods. It’s been about two weeks…we kind of danced around cereal for awhile, I didn’t want to disrupt his system any more than it already was, but for the past week and a half he’s been all about cereal twice a day. This past sunday we finally tried veggies for the first time…sweet potatoes. This boy LOVES to eat. After all of Ben’s food issues, it’s kind of a relief. Of course, I’m sure that at some point Toby will decide not to eat and the same heartbreak will begin. For now, he’s eating very very well. We’re taking the solids thing slowly, introducing new things a little at a time. I’m looking forward, though, to making him all kinds of things to eat and trying all kinds of new things with him. We’re working on a cup as well. I started Ben on a cup as soon as he started solids and we had no problem weaning from the bottle at one year…I’m hoping Toby will be the same. Of course, right now everything winds up down his front…and he can’t quite figure this whole drinking thing out, but that’s why we’re starting early…baby steps. 🙂

Toby has been rolling over with “moral support” for about two weeks. He’ll roll up on his side, I”ll take his hand, and then he’ll go the rest of the way. This weekend Scott and I saw him roll from back to front on his own for the first time. It was very exciting. And this morning, after I put him on the blanket in the living room and went downstairs to throw in laundry, I came back to a Tummy-fied Toby. The days of setting him on the blanket for a minute are GONE GONE GONE. It is so cool to see him do new things. For now Toby shows no interest in sitting. I think it’s because he’s figuring out the whole rolling thing. If we try to prop him up to sit he throws himself backwards to lay on his back. Ahhh well. All in good time. Also, we’re seeing him draw his knees up under his little bum….crawling cannot be far away. Probably not soon, but probably too soon for me. 🙂

We’ve been getting outside a lot. In the pictures below you’ll see Toby’s new wheels. I found a bike trailer at a garage sale (for a real deal, too), and we’ve been tooling around in it. Toby really enjoys it…I think he likes the breeze in his fuzz. We have a grocery store very close (less than a mile) and a library only 2.5 miles away, so I’m hoping that Toby and I can do more biking this summer and less driving….with the cost of gas and the size of my waist it’s a win win. Towing him is NOT as hard as I thought it would be, I really enjoy taking the bike out with him. Toby loves the outdoors, and even if he’s sitting in his chair or the exersaucer on the deck he’s a happy boy.

I’m trying to blog more often, but it doesn’t always work. There is so much to do during the day, and Toby isn’t really interested in playing on his own yet. 🙂 But we’ll be back again…stay tuned. Until then there area always pictures to look at here