Growing Up So Fast

I took Owen for a haircut yesterday, and of course, he cried the entire time he was getting his hair cut (those sensory issues, may they go away!), but after it was done, I wanted to cry! He looked so grown up, and it made me realize that in a few months he will be three years old. I can't believe he is already almost three...

Then I came home and looked at my daughter, and she is already three months old, and getting older by the minute! How does this happen, how does time go by so fast?! I remember before I had kids when I would be at the office and the days seemed to drag. I rememberd looking at the clock and noting that the minutes were dragging...then, it's like my life sped up when I had kids. The minutes that used to drag now fly by in increments of days and weeks. Before we know it, our kids will be grown ups. And that scares me. I already am feeling sad that Owen is going to start school in a few months, because for now, I feel as if I can protect him and direct his life. When he starts school, how am I going to keep him from the demons that haunt me: sexual predators in the form of teachers; bullies; just plain mean kids; and the general stumbles he will make when he tries to navigate stairs, or playgrounds, etc. How can I not be afraid for my child?

My MIL recently gave me a book called "Those Are My Private Parts," written by a mom and illustrated by her four-year-old daughter. It is an amazing book and one that should be read to your child, no matter whether boy or girl, toddler or teenager. It is a book that speaks in a child's language about what is appropriate and that is it NOT okay for someone you know to touch you in your private parts. In the back of the book, the author lists the statistics of child abuse and that alone is scary. What's worse is that one of the statistics says that children with disabilities are more likely to be molested. I hope any of you reading my blog will buy this book and read it to your child, so they can feel okay about telling you if someone is touching them in their private parts. The website is: http://www.thosearemyprivateparts.com/index.html

If you have a child, please take a moment to order this book and read it to your child!*

*I have no affiliation with this author, and I do not make any money off the sale of this book

First Sentence!

The other day, my husband called me into the bathroom where Owen was sitting on the toilet. "Listen to this," he said. "Owen, do you want to fly?" he asked (to deal with his sensory issues, my husband will play with Owen, lifting him over his head, to fly). Owen looked at me and said, "Daddy, I want to fly," and did the Daddy sign, as if to emphasize what he was saying. I was so proud of him I almost cried. He said a sentence, and not a two word sentence like "Daddy fly," but the whole sentence.

Then, a week later, I came home from work, and Owen was playing with his babysitter. He loves her so much and she really works with him, reading to him, playing ball, etc. Anyway, as she was getting ready to leave, I asked her if he had gone to the toilet. "Yes, about a half hour ago," she said. Then, Owen looked at me and said, "I want to go potty," and did the sign for potty. I almost fell over. It was clear as day. I thought maybe I was wrong, and his babysitter looked puzzled because he had just gone, but I put him on the toilet anyway and sure enough, he went both pee and poop. I was ecstatic. My son was speaking in sentences!!

When we went to speech the next day, I told his therapist about it. She was really impressed. And sure enough, peppered through the next week or two, he would say a sentence, beginning with "I want..."

I am so proud of my child, and so hopeful that he will be able to communicate by the time he gets to school. One can hope, right?

Now, if I could only get him to say "Momma"...

Food for Thought

I read another person's blog today, who commented on their approaching 38th birthday, and their sadness at not having fulfilled goals yet. I can so relate to that. I turn 39 next month, and I still feel as if there are so many things undone, so many people unmet, so many words unwritten. I always thought that I would be a published writer by the time I was 30, and then I thought maybe by the time I was 40, and now, I don't know what my next "due by" date is. I know that I didn't think I would have two wonderful kids who would interrupt my career, and am grateful for the hours I can spend with them, just hanging out watching them grow and learn.

I too feel as if my goals haven't been met, but my goals have also changed. All my life, especially when I was younger, I always thought that I would do something really important someday, like write a book that would change people's lives. The other day, I finally realized that I have done something important: I chose to have my child with Down Syndrome. I didn't cave to society's views of testing for everything, and I allowed my child to be born without judgment, or without having failed a test before he was even born.

Lately, I've been thinking that maybe my life isn't about publishing a book, but maybe it's about connecting with other parents who have children with Down Syndrome. Maybe I am doing my most important work right now, but I haven't looked at it that way. Maybe we are all busy living the lives we were meant to live, and that's okay.

Back to Work

I started back to work this past week, only part-time, but still, it means time away from my kids. By the way, it's so nice to be able to say "kids" (plural), only because I never thought I would have more than one. Kids....I just enjoy being with them so much. Sometimes, I wish I could just stop time, and freeze it, right where we are: with Owen walking (and now starting to run in that funny Frankenstein way), saying "Wiggle Bay" from the Wiggles show, and asking me if he can hold baby. Then there is Tess, who is starting to smile and laugh now, she's not so serious. For a while, I thought she was going to be this very serious baby, since she already had the forehead lines, and she would look at me with this really piercing look. But, she is starting to do what all babies do, expand her world.

In a few weeks, we are going to enter Owen in the Tri-Valley Special Olympics Mini-meet, which is for babies 6 months old to kids 8 years old. They have races such as "50 foot run", and "5-foot roll", which sounds fun. I had a friend go last year and she said it was so cute, especially the baby contests. You can find out more information through the DSALA site (www.dsala.org).

I feel like I had so much to write about the other day, but now I can't think of anything to say except it's almost Easter, and Owen and I have been practicing his Easter egg hung abilities (so that the older kids don't beat him out of any eggs).

I'll write more later...Happy Easter!!

Owen in Class

Today was Friday, and I took Owen to his drop off transition-to-preschool class. It wasn't his usual class, because he is taking swimming lessons (with the Swim Nazi), and couldn't make the early class on Tuesday so I brought him today. It was a bigger class, but a lot of the same kids that he was in Mommy and Me with. When I came back to pick him up, I was early, so I watched them for a while. It was so cute, and I was so proud of Owen. He played outside with all the other kids, chasing one girl, Charlotte, to the slide, then watching her come down and following her around again, then turned around and joined some other kids who were playing with toys in a sandbox. I noticed much more of a camaderie among the kids, now, different from when it was Mommy and Me. I'm not sure if they have just all grown up, or if it is different for them without all the moms around. Then they all sat on the bench and they did the ABCs, and got snacks. I saw Owen take his snacks like all the other kids, and eat them, as happy as pie. I wished I had a camera, just to show other people how normal it all was, and how much he belonged.

I ran into a couple of moms I hadn't seen since Owen was about one. Amazing how so many of them were at least 40 with their first child, saying it would probably be their only one, and now they have all had a second, even before me. It makes me feel older than I am, wondering how I got into this weird world where people in their 4os are having typical kids, and I was 35 and had a child with Down Syndrome.

Today was Friday, and I usually have a babysitter but she told me she had an appointment. So I arranged my day differently, and took Tess with me to get my hair cut. Later, around 5, I went for a walk around our neighborhood, and sure enough, I see her walking another little boy who she also babysits. I couldn't believe it, so I went over to her and said, "You're working for her today?" She kind of mumbled and said that she came after her appointment and is working later for her (we use her only from 9-5 because it costs money to have her stay late and we have to watch our budget). I know this other mom has full-time help and doesn't work, and has two kids. But come on, she has to take my babysitter, too? It made me so mad, mainly because I felt betrayed by my babysitter. I feel like I can't trust her anymore, like next time she says she has an appointment, I'm going to be left in the dust, and I have to go back to work next week, I can't afford to stay home on the days I need to be there. The funny thing is that the woman she was sitting for used to be a friend of mine, and it's more that I don't trust her to try to pay more money to use my babysitter. I don't know, it's so weird. The thing is that I think the babysitter really loves Owen, or at least I used to think that until today. Today I just felt sad, because I don't trust her anymore. I suppose it won't last forever, though, eventually Owen will be going to school and we won't need a babysitter. And, as Erik said, we need to look at the big picture: we need her now, but when Erik is done with the new house, he may be staying home again with both kids, so we won't need her.

I'm So Flattered...and Excited

So yesterday, I got a call from a person who we met though the Down Syndrome Association of LA (DSALA). He has a son who is 7 or 8 years old. He has been working with Dr. William Mobley, a scientist who has been working at developing a drug that will help kids with DS have a better cognitive level so that they may be able to one day live independently, and be able to do what other people do. We saw him speak at the DSALA luncheon last year and it blew me away. He breeds DS mice, and then studies them. It's this amazing study he is doing, and it's hard for me to explain, so here is the website of the foundation he is doing this research through: www.dsrtf.org (sorry, I don't know how to link it, so you might have to cut and paste).

Anyway, I got a call yesterday, asking if I would be interested in advising them in doing some PR so they can raise awareness, and raise money to start clinical trials next year. Now, when I spoke to Dr. Mobley at the National Down Syndrome convention last year in Anaheim, CA, I asked him again how close he thought he was to this discovery, if you will. He said that he is about ten years away from having something. I asked him, "so you think this will allow my child to be like typical kids, and get good grades, and eventually hold any job he wants, and maybe get married?" He said, "you better plan on inviting me to your son's wedding, because I plan on dancing at it." For a doctor and scientist to be that sure, and that willing to give me so much hope, he must be on the verge of a great breakthrough.

Now, when I asked this person to give me a little more information about where they were at, he said that he has developed a drug that they have used on the DS mice, and it has cognitively brought them up to the level of the typical mice. So, they want to start clinical trials and see if this will work. If that's the case, then his time frame is about right, because Owen is now almost three, and that gives them seven more years to do trials and studies and perfect it. Wouldn't that be so great if our kids could be able to decide to do whatever they want to, and not be held back by their inability to process life and all that goes with it? I know there are probably a lot of negative factors to consider as well, but for now, I'm just excited by the possibilities. Stay tuned for more...

A Different Life

I was thinking the other day about where my life is now: two kids, and thinking about one more before my body shuts down the baby-making function. What if Owen had been a typical child? Would we have stopped with him? Would he have been 'enough'? I think about this because sometimes I look at Tess, and how round her eyes are, and I wonder, 'would Owen have had eyes as round and big as hers if he didn't have Down Syndrome?' I know that is impossible thinking, but I do it occasionally, so I don't think there is any harm done. I was reading over an old journal the other day from when I was pregnant with Owen, and I talked about the possibility that we would probably just have this one child. That was before we had him and knew he had Down Syndrome. Was this God's way of making sure we had another child? If each child is meant to be (to some extent, because we know that we can control getting pregnant or even continuing a pregnancy), then could God have been gently telling me that one wasn't enough for us? I mean, I am so glad that I have both my children and I love each of them, but if Owen had been a typical child, would my mindset be what it is now? Would I have gone about my business, returned to work, continued with our lives the way they were? Owen was such a huge adjustment for us, especially with the news of Down Syndrome. It literally changed the way I saw things, including my job, my career, my life, my relationships. It both discouraged and encouraged me. It made me who I am today, and I am not the same person I was three years ago.

On the other hand, I have friends who are all having their second child, and, of course, everyone's child is fine. In fact, a woman who used to be a friend of mine, who kind of went off the deep end and stopped talking to me, just had her second child, and he is a perfect little boy. I told my husband the other day that it seems the worse off you (a nod to all those crack-smoking teenagers) then the healthier your baby is, right? I mean come on, I've played by the rules all my life, I've done everything right, I've been nice to other people, and out of 800 babies born, my child had Down Syndrome. Yet there are people out there who abuse their kids, torture their babies, do meth while they are pregnant, smoke a pack a day, and generally treat their babies lives like shit, and their baby is fine. Am I not seeing the karma here? Did I miss the boat? Should I have been a really messed-up person and maybe my child would have been fine?

Too many questions with no answers...so I'll stop now.