Wednesday, June 28, 2006

Lesson #1001: Always Get a Copy

I took Owen to the Ear, Nose and Throat (ENT) doctor yesterday, for a checkup. Now, I am the champion parent on making sure that Owen has his checkups and he has seen every doctor that is recommended. The last time we saw the ENT was two years ago, and the reason was that after he referred us for a hearing test, the audiologists said his hearing was just fine. We thought that was that. Of course, we never got a copy of the report and neither did our pediatrician. The only reason I actually thought about it again was that the LAUSD asked for a copy of the test, or else they would do a hearing check. I figured we didn't need to put Owen through that stress since he had already had his hearing checked pretty extensively the first time around. When I called the ENT's office for a copy of the report, they told me his file was stored, and it would take a few days to get it. In the meantime, I decided to make an appointment with the doctor (the funny part is, they asked me why I needed to see the doctor again, and I said, "because maybe I should have him checked again?" Duh!).

So we went yesterday, and the doctor says to me, "why didn't you follow up from the last visit?"
"Excuse me?" I said.
"Well, it says here that you should have brought him in for a follow up 6 months after he had his hearing tested."
Now, I don't know about you folks out there, but last time I checked, I wasn't a mind reader, nor was I able to figure out that I needed to bring him back, since I had never gotten a copy of the report. And neither had my pediatrician. I didn't really think about it at the moment, because I was trying to keep Owen still while he looked in his ears, and took wax out. Then he tells me that he thinks Owen has water in his ears, and that possibly he may need tubes. Now, this is all news to me. I guess he was looking at the audiology report from two years ago, and telling me that Owen's ears were not responding as they should have. Now, call me crazy, but shouldn't the doctor's office have alerted me to this, and let me know that I should have taken some kind of action? Instead, his chart was filed.

So at speech today, I told his ST about this. She was concerned, especially since if he has any amount of hearing loss, it could affect his learning ability, which is crucial at this age. Needless to say, I feel like an idiot for not following up, even though I know that this isn't my fault.

I'm so disheartened by the fact that I let something like this slip. I remember the audiologist telling us that his hearing was fine, so we thought we were done, we could rest easy. Now, I'm afraid we have wasted two years that might have been key for him. I'm not so concerned about putting tubes in his ears, either, I would rather do that if it would help him. But, I just hope we haven't missed the boat.

And, of course, as usual, they are booked until the first week of August for an appointment. It's not like time really matters, does it??

Owen starts preschool in two weeks, and I am so dreading it. I feel as if he is going to feel like he's being punished because he is going to be sent away for three hours every day. Maybe I'm the one who feels like I am being punished because I have to send him to school for three hours. I still feel as if 3 is too young, but perhaps I am just being one of those moms who can't let my child grow up.

Monday, June 26, 2006

Owen is Three

Today is Owen's actual birthday, and I did look up at the clock at about 7:15 p.m. tonight and realized that three years ago I was in surgery, having Owen. I am amazed that three years have gone by; three wonderful, amazing, fun, surprising years. Years I wouldn't trade for anything. I was thinking today as I was driving Owen home from speech about women who terminate their DS pregnancies, and what would my life be like if I had somehow chosen that path. I also was thinking about how when we first found out Owen had Down Syndrome, my first thought was that maybe it would be better if he had died, then his life wouldn't be ruined. But that was when he was only a few days old, and of course, it was before I knew what I know now.

Now, I realize that I would have missed out on so many incredible moments, and such a tremendous amount of growth within myself. I could not, would not, want to imagine my life without my little boy. And I just can't imagine him as anything but himself. He is so charming, and funny, and sweet, and even when he gets upset, I just feel such an outpouring of love for him. In some ways, I think that my feelings for him run deeper than they ever have for another human being, including my husband. I mean, I love my husband, but there is something about loving a child who has Down Syndrome. Even Tess (who is so sweet and wonderful) I know that she is going to be okay, and won't need me as much as I feel Owen does sometimes. There really is a vulnerability to Owen, something that I don't see in other kids. He is so receptive to what is going on in the universe, that I think he internalizes a lot more than we know.

I just feel as if Owen is part angel, and that he was sent here to teach so many of us a lesson we never anticipated. But, having said that, I hope God sees that it will take us a very, very, very long time to learn these lessons, so He better not be thinking that Owen needs to return any time soon.

Saturday, June 24, 2006

Testing, Testing, 1...2...3

I took Owen to the Regional Center on Thursday for his three year evaluation. Aparently, we get a new counselor, someone who will track him while the school system takes care of most of his therapy needs. They will come back into the picture when he turns 18. I wasn’t sure what to expect, but it wasn’t like I thought it was going to be. I met the woman who would be evaluating him, and she was very nice, and sweet. Owen immediately took to her. We went into a room where she told Owen she was going to have him play with some toys. I sat next to him, but she cautioned me that I wasn’t allowed to help. Then she asked him to do several tasks, like puzzles, towers of blocks, pick out pictures, etc. After it was over, which it didn’t take very long, she asked me some questions about his health, and his life. I saw her tallying up numbers on a “test” sheet. Then she said, “I have to say, he’s doing really great. He scored great.” Then she told me that he had an overall score of 70, which is below average, but not mentally retarded (or MR, as she referred to it). Then she said that his receptive language skills were 77, which put him in the normal range, and his performance was 70. I asked her what that scale meant. She told me that typical kids usually fall between 71 and 100. I guess 70 is the line, because she said that mentally retarded starts at a score of 69 and below. Now, I’m sure why Owen hit the line is neither here nor there, but I asked her to repeat everything because I was deliciously happy that she was telling me he was on the low end of typical, and not MR. She told me that if he continues to excel the way he has, given the services he needs, he could do well. I was so happy to hear that. I mean, really, nobody has ever told me what his cognitive levels are, and what to expect. We have always been told that they can’t really tell you what his cognitive levels are, until he’s older. And, I suppose, that's true. After all, these tests are imperfect. And Owen didn’t even do as well as I thought he would. There were clearly things he knew that he wasn’t pointing out, pictures he knew very well. But, I think he just got bored, and tired of being asked to do things.

So here’s what it comes down to: my child is just going to be on the lowest end of average, I hope. But he won’t be paralyzed by an inability to think. That, to me, is what is important. I don't know why it is so important, except that I realized the other day that it seems as if parents are always fixated on how "smart" their kids are. You don't hear them say, "wow, look how energetic he is!" or "wow, look how talkative she is" it's always, "look how smart my child is." Why are we so concerned about how smart our children are? And really, doesn't it just lead to heartache for those parents who push their kids so much because they are so "smart"?

So I brought Owen home, where my MIL was watching Tess. I explained the scores and what the evaluator had said, and after all that, she looked at Owen and said, “So you won’t be so dumb after all, huh?” It sounded so harsh, and so wrong, but what could I say? She thinks that kids his age don’t know what she says. But they do, they are sponges and absorb everything.

Owen turns three on Monday, and Sunday is his birthday party. Everything has been bought, and it is all ready to go. I even found a place to do a Wiggles cake…I can’t wait to see his face when we bring it out…

Monday, June 19, 2006

Nervous Nellie

So Owen was sick again the other night; this time, diarrhea all day, and then he totally threw up twice in the middle of the night. And, of course, we were showing our house on Sunday, so we had to spend all morning changing sheets and scrubbing the carpet in our bedroom. I feel so bad for him when he gets sick. I know what it's like to be sick, and it's horrible, I can't imagine what it's like for someone who doesn't understand what is happening.

On Sunday, Father's Day, we ended up going out to Malibu for Father's Day, but we missed brunch and didn't get out there until the afternoon. I could tell Owen was still feeling a little sick, but otherwise, he was fine. I have been so fixated on every little bruise on his body lately, wondering if something is wrong. I have noticed more and more how purple his eyes are, especially the bags under his eyes. I look at Tess and she is the picture of health, and I wonder why, if Owen has Down Syndrome, why couldn't God just leave it at that? Why do they have to be sicker, lower immune system, etc?

I have been feeling sick to my stomach all day long, every day, for the past two days (no, definitely not pregnant!), because I am so worried that Owen is sicker than we know. I have called my doctor's office to order the leukemia blood test, and the thyroid test, if only to put myself at ease (or really throw myself into a panic!). I can't help it. I feel as if Owen is so much more fragile than any other baby. When Tess gets sick, and she's already had four colds in her short five months life, I don't worry as much because she just seems stronger. I feel worse when Owen gets sick because it seems to take such a toll on his little body.

I don't want to live my days like this, but loving Owen so much scares me. I'm so scared that he will be taken away from, that he will get really sick and...I can't even write it, because I don't want to jinx myself. The only thing I can think that might be happening to me right now is that maybe I am going to get my period soon (which I haven't had yet since I was pregnant), because last time, when I was close I got really paranoid about everything. I hope this is just a phase, because I know it's not good for me to be so anxious all the time.

In the meantime, just as we get our house ready for sale, the market slows down, way down. Even though people love our house, we have not gotten an offer. But there was no way we could have sold is last summer because we didn't have anywhere else to go. We may end up staying here. I suppose things will happen the way they happen.

Saturday, June 17, 2006

Clingy Boy

Yesterday, when I started to get ready for work, Owen would not stop hugging my leg, making it virtually impossible for me to move anywhere. It was just like any other day that I go to work, but for some reason he did not want me to leave. If I tried to go to another room, he would start to cry, as if I had left already. I took him downstairs with me while I checked e-mail, and his lower lip started to tremble when I tried to explain to him that I have to go to work so I can pay the bills. Then he hugged me so hard, it was like he wanted to climb inside of me. I so didn't want to leave. It broke my heart to finally have to go and leave him screaming and crying for me. He never used to do this (well, actually, he did a couple of times when he was about 1-1/2 years old. I didn't know that this would happen again. I thought he was growing up, but maybe he's feeling our stress, and maybe, just maybe, the whole "new baby in my house" is finally kicking in. I mean, I can't help that I have to feel her constantly when I'm home, but I'm sure he feels slighted, and feels like she has taken his place. Plus, he's begun to do some things that make me so mad, like throwing his sippy cup, and throwing food, refusing to eat, not going to the toilet, and other things. I know that part of it is his just being a two-almost-three-year old, but I don't know how to fix it. And, I just don't know what is appropriate discipline for a child who you think knows what they are doing, but cognitively, do they understand discipline? A couple of times I have slapped his hand, and he thought it was funny, and then slapped his own hand. I don't know what to do with that. Then I tried a time out in the corner, and he thought that was so fun, trying to get out of the corner, and knowing that he had my attention. But, I don't want him to think he can continue to act like a baby when he needs to grow up and get ready for school. I can't have him throwing things at school just because he doesn't like them.

Lately, I've really become fixated on getting Owen to act more like an kid and less like a baby. I've been trying to have him eat with a spoon and fork, but of course, it's still very difficult for him. Partly that may be because we haven't insisted that he use a fork and spoon until recently. With the spoon, I usually have to get his vitamins in him and can't afford to have him spill it all over, and other than that, I was just happy he was self-feeding by picking up his food. But I'm sure when he's six it won't be so cute that he picks all his food up with his fingers. I finally threw out all his bottles, and now he is just using sippy cups. I thought that would be a much bigger hurdle, but it hasn't been. We had been transitioning him, albeit a little slower than most kids, but now they are gone, and it is only the pacifier he uses (although that is strictly at night when he goes so sleep, so I don't see that as a big deal. Besides, he has sensory issues so he needs to chew or suck on something). I hav also been trying to get him to pull down his pants, or pull up his underwear. I recently saw a couple of two-year-old girls, Owen's age, who were changing outfits over and over. I was so amazed that they could take off all their clothes, and put on new outfits. And I know that girls just like to do that, but I feel as if Owen is so far behind because we have been doing everything for him. How do you know when to stop and make him do it himself?? It just seems like when we have to go somewhere, if I don't do his outfit, he will stay in his pjs all day. Am I that parent that I never said I would be? Am I one of those parents who can't bear to let their child grow up so they do everything for them?? What is the cutoff age?? God, it gets so hard as they get older. Why can't they just stay Tess' age: soft, cuddly, sleepy, hungry, and so easy...

I finally gave Tess cereal, although if I had my druthers I would just continue to breastfeed her for a year without any changes. But I suppose babies must turn into children, too, and she needs to learn to eat food. She tolerated pretty well, but I've only given it to her twice. I feel as if it's so much easier just to breastfeed her, and now with food, suddenly you have start working it around breakfast, lunch and dinner. I just finally got Owen on a schedule of eating, and now I have to add her?! Ah, the joys of motherhood (which, as you all know, I am not complaining...)

Wednesday, June 14, 2006

Trying to Keep It Together

Okay, so we got through our IEP, and of course, I thought that it would be okay not to go into the office on Friday afternoon (usually I work on Friday), since it was already too late to make that trek and I figured I could make up the hours the following week. Isn't it funny how you just get your personal life settled and your work life blows up in your face?

I have not been able to check my e-mail for work from home, and my boss knows that (or so I thought), and when I had asked for a blackberry so that I was able to get important e-mails he said they didn't have an extra account for me at this time. Okay, fine, I work my 20 hours and am available by cell phone. Unfortunately, there was a writer who asked about using a particular quote from my boss in a story, and for some reason, my mind was telling me it wasn't that urgent. I did communicate the quote to my boss and he sent me an e-mail with a new quote, but it came to my work e-mail after I had left on Wednesday, and since I wasn't back in the office until Tuesday of the following week, I completely missed getting the information. Sure enough, on Tuesday, his quote was staring me in the face, in print, centerspread. I knew I was screwed. I sent him an e-mail alerting him about it, and he sent me an e-mail that took me to task for not doing my job. I know I screwed up, but really, how much can I keep juggling in my mind and on my plate without something falling through the cracks?! I know, I know, I get paid to do that job, so that should be my priority, but lately, Owen's IEP has been my priority because it determines the next part of his life!

I guess that's no excuse, but you can't tell me that anybody at that company doesn't put their family first at some point or another. My God, I haven't even taken any vacation, and I came back early from maternity leave to work on things that needed to be done!

So now, I have been really pretty depressed being at work, because I know that this mistake will haunt me for the rest of my career there. The plain ugly truth is that I am a woman, working in a man's world, and we are not easily forgiven (by the very virtue that we don't have balls). Maybe I'm just not cut out to be doing what I am doing anymore. Maybe I have been slipping because nobody cares about PR. Maybe my son's education happened to be much more important to me that week than making sure a quote was confirmed or replaced. Maybe I'm in the wrong business, after all.

Saturday, June 10, 2006

We Have Been IEP'd

So, relief has set in. Our IEP is over, and we are all happy with the results. Here's how it went: we got there (bearing food, as everyone told us this was a good idea), and said hello. Our two therapists, Jana (speech) and Lisa (OT) were already there. Everyone seemed so silent, not really talking or saying anything. It's so odd, how these aren't like business meetings where people try to get acquainted before they actually get down to business. This was so serious, as if we were all about to take a test, and couldn't talk about it beforehand. So, I pulled out a tape recorder and said I would like to tape the meeting. They all looked at each other and said, "you can't do that without 24-hour notice, and we didn't get any notice." I told them that I could share the tape, and they said they just couldn't allow it, because they should have been given notice in order to tape it themselves. Immediately, I bristled. I wasn't sure why we couldn't just tape it (and of course, I had wanted to tell them we would tape it, but Erik said no, that it would be far easier to receive forgiveness than permission....well, this time, his theory didn't work). So, I backed down. Then, they handed us a book that explained our parental rights, and said we should have already gotten a copy of it. We had not. I even showed them the book we had with all our information on Owen, and I pulled out every book I had, none of which was that book of parental rights. So now, I was feeling backed into a corner. I couldn't tape our meeting, but they could throw a book of my rights at me and not give me time to read it? How fair is that? So I said, "Fine, but I am not signing anything until I have a chance to read my rights." Erik leaned over and whispered in my ear, "you've got to calm down, they haven't done anything yet." He was right. I was getting angry before anything had been decided. So, we proceeded. We went over all Owen's reports, and then they told us that, given everything they had observed and read, they felt he was at an 18-month level. 18 months! That's only a 1-year old! But, as Erik explained to me later, he has to be at a much lower level, otherwise we won't get services. So, we began the part of deciding what the LAUSD could do for Owen. They asked what school we liked and we told them abou the one we had chose, a collaborative pre-school, with 15 typical kids, and 5 special needs. They all nodded and one of them said, "that is the most sought-after placement. Those teachers are great." So they agreed that Owen could attend that class, which was a relief for me, because I really like the teachers and their classroom and their philosophy. School, check.

The next thing was services.What would we get beyond school? The OT said that she was on the fence, but that she felt he could benefit from one hour a month of OT. We weren't expecting that, because everyone said we wouldn't get any OT. The OT would come into the classroom and help Owen navigate some tasks, like scissors, beading, etc. We felt that was fine. Of course, we turned to our OT and asked her if she agreed, which she did (we had been told that they can't recommend unless we ask them what they think). Then, the PT said she didn't recommend any PT because Owen was doing excellent. She said that she was very surprised at his gross motor skills, the ability to navigate stairs, his hips and gait were ermerging normally, and that he had full control of walking. Even though he is not running, she said he is on the verge of it, and that jumping would be emerging sooner rather than later as well. She was amazed at his gross motor coordination, and thought that he would be able to navigate the school just fine. We agreed. We hadn't had a PT for at least a year anyway, and Erik and I practiced stairs and jumping and running with Owen a lot.

Then came speech. The speech therapist recommended that Owen continue with 2 hours per week (what a surprise!), which is what he has been receiving, except that one hour would be with a ST at school, to teach him to communicate with his peers, and he could still maintain his one hour a week with his current therapist. We all looked at each other. We had already gotten what we wanted, without a fight! We were fully prepared to come and fight for two hours of speech, and if we didn't get that, we were going to ask for a Stay-Put, which means they have to continue your services as they stand until the issue is resolved. But here we were, and what we wanted was given to us. Again, we deferred to our ST to make sure that what they had given us had no hidden cost. She agreed that what they were giving us was fine. So there we were. They asked if we had any questions, and we didn't really, except, when do we start school? How do we go about getting him enrolled, etc. We didn't sign the IEP, just because we wanted to take our time and look it over, make sure it was what we had agreed upon and that there were no errors. I glanced at it, and saw that it had a check for bus service, and that it would pick him up at our Studio City house. I asked Erik, why did we need the bus service? He told me, "shhh, just take it, we can always say no." And here I thought people had to fight for bus service, too.

So, we took our therapists out to lunch, since they had given up their day off to come to our IEP, and it had taken three hours. Both of them said that this was one of the best IEPs they had been to in a long time, and that they felt we had been given a good IEP team. Our OT said that, "unfortunately, a lot of times I see that when parents don't appear involved, or organized, or maybe have issues with communication, they often don't get a lot of services." She thought that maybe this team knew we were on top of things and therefore tried to give us what we wanted. I think that probably has a lot to do with it. So, remember, if you have an IEP coming up, dress nicely, be prepared, bring all the paperwork, and know your acronyms (IEP, NPA, IPP, ESY...)!

I am so relieved that it is over. The bummer is that the next time we call an IEP (and, if we feel that this IEP is not working for us, we can call up to four IEPs per year), it will be a different team. And we were just getting in good with this one...

Thursday, June 08, 2006

Strees, Stress, Stress

I feel like such an awful parent. Two nights ago, I came home from a work event, and the pillows from the couch were standing in the kitchen, reeking of urine. So, even though it was late, I scrubbed them down, all the while pissed off that Erik hadn’t been vigilant enough to get Owen to the toilet. The next morning, I kept asking Owen if he had to go potty, and he kept saying no. Then, he stood there, and I could see him pushing out the pee as he peed in his underwear all over the floor. Then he proceeded to slide around in it. It took me a few seconds to register (which is why he had time to play in it), before I started yelling, “Damn it, why can’t you just go to the bathroom?” And then it got worse. Then I started saying, “No wonder you can’t learn anything, because you have Down Syndrome,” and other awful, awful things like that. To a three year old. Yes, I said that to a three year old, who of course has no idea what I was actually saying, ,but knew enough that I was mad as hell that he would not look at me and ran to my husband, crying. He knew I was mad at him, and of course I was, but then I just felt extremely guilty for being so mean. Because of course, he doesn’t understand what I said, does he?

So all day, I felt so guilty, and mean, and just plain sad. Because I want so much for my child, and this whole IEP thing is really wearing on my nerves. I just want it to be over with. So, the fact that Owen is now deliberately peeing in his pants could be because: a.) both Erik and I are stressed and he feels that, b.) we are selling the house and keep moving all his toys into the garage so he has nothing to play with (he probably is thinking, what, I don’t live here anymore?), c.) he has a new baby sister who is not going away and is constantly on his mom’s breast eating, d.) mom then decides to go back to work, e.) and she stops letting me take naps, which she used to lay down and cuddle with me, and f.) change is constant in our house. So, any reason that he shouldn’t be crying out for attention??

So then I get all the reports from the LAUSD, and as I am reading them, I am trying not to cry. It’s one thing to know that your child has a disability, it’s quite another thing to see it on paper: “the child is mentally retarded and therefore qualifies for school assistance.” I was so devastated by the black and white terms they used to describe my child, and how he performed. But, like my husband said, they didn’t do anything other than describe how Owen is. I just feel that for three years we have been blessed with people who truly cared about Owen and they all thought he was doing well. Now, it’s as if we have been unleashed into the real world and people are mean. You forget how mean people can be sometimes. And maybe it’s not that they are mean, but that they are just being truthful…and we all know that truth hurts.

Last night was our support group meeting, and when I walked in there were only two other moms there: one with a 5-year old with Down Syndrome and one with a 1–year old (and she’s a LAUSD teacher). They asked me how I was doing, and I just couldn’t keep the tears back. I had been trying so hard not to cry all day, and suddenly, I just had to cry. I was telling them about the reports and how hard it was to hear the bitter truth from these people. I could see one of them tearing up, and I felt so bad for not being strong, because I have always been the mom who is the most strong, the most upbeat. But I just couldn’t do it that day. After I talked to them for a while, I felt so much better, and in a way, I’m glad I got that out before some of the others got there, because it really was just something I needed to let go of so I could enjoy the night. I feel like every time we meet, it’s such a great night. I really look forward to these meetings, because I feel as if it’s like a monthly party with women I would totally want to hang out with, except that we all have a child with Down Syndrome in common. But, what amazing women! I am always struck by how much alike we all are, and yet in the same sense, how different we all are. Turns out, three of us are from Michigan, go figure.

So tomorrow is our IEP, and I must get some sleep so I am well-rested. Thank God, Tess sleeps through the night, oh, and did I mention that Owen just woke up a few minutes ago to go pee, and then went back to sleep? What a love...

Monday, June 05, 2006

He Can Chew Gum!

In speech, we have been trying to teach Owen to chew gum (there apparently is a whole game plan to teaching a child how to chew gum). Both his speech therapist and OT thought it would be the perfect thing for his sensory issues, since he loves to chew crunchy things, and he will chew one of those rubber toothbrushes until it disintegrates. So, the past few weeks, we have been trying to get him to chew a piece of gum. He hated it. Every time our therapist would pull the gum out, he would run over to me and hide (and yet, this kid has no problem putting Playdoh in his mouth!). One time, we even tried to hide it among other pieces of Playdoh, but no go, he knew it was gum. So, every week, we would still put it in his mouth and make him bite down, and then have him throw the gum away.

Well, today, we got ready to do gum, and I was expecting the same battle, and crying. But, with little resistance, we got the gum in his mouth, he chewed it once, twice, three times, and then kept chewing it! Then, he switched it to the other side with his tongue (which is exactly the kind of oral muscles we are trying to activate), and kept chewing. He looked at us like he had been chewing gum forever and what was the big deal?! His speech therapist and I just kept looking at each other in awe. He chewed it for about 10 minutes, and of course, we were afraid he was going to swallow it, but finally, he pulled it out of his mouth, put it on the napkin, rolled it up and brought it over to the trashcan. I was so astonished...this kid never eats anything sweet, and of course, mint gum doesn't go over very well either. After the gum chewing, he was suddenly so calm, and rested, as if the gum chewing had given him the input he needed and he was okay. It was amazing...and I will never take gum chewing for granted again.

Now, when I was growing up, my parents didn't want us to chew gum because it inevitably ended up on the couch, or chair, or somewhere it wasn't supposed to's amazing that these days, I can actually ask schools to make accommodations so that he can chew gum, if it's necessary for his concentration. His speech teacher told me that gum chewing is one of those exercises that helps him organize himself.

Then, after speech, we went and picked up his new glasses, which are bi-focals. I thought for sure that these weren't going to go over too well, but when we got home and I pulled out some puzzles to work on, and put the new glasses on, he seemed to adapt right away. He finished the puzzles in record speed, and then got up and walked around the house, with more confidence than I've ever seen him have. When my husband got home, I told him that I think Owen sees much better with these glasses, so he promptly took him outside to go down the stairs. At this point, Owen can go up and down the stairs holding on the rail, but he goes very, very slowly and with great caution. He can actually walk up smaller steps without holding onto anything. The biggest issue he has is with different types of material, such as a sidewalk that has a different material than the driveway. He can't seem to navigate curbs and steps because of an inability to judge the difference. So, we'll see how the new glasses work.

Something so cute today: Owen was taking a bath and Tess was sitting in her bouncy chair in the bathroom with us. As Owen splashed around, Tess started laughing really loud every time he threw a toy up in the air. It was so cute, I couldn't help laughing. I love watching Tess become this little person. It's such a wonderful feeling to not have to worry and wait and wonder if she will do things...

Friday, June 02, 2006

The IEP Process Has Begun

So now the process has begun. We are finally transitioning Owen into the LAUSD. Here’s how things have gone so far. We had our initial evaluation with the school district, and that seemed to go well. There were several people there including an OT, PT, school psychologist, school nurse, and a speech therapist. At first, they all sat around a table and kind of stared at us. I’m not so sure these people understand kids, since that is exactly the easiest way to make a child like mine feel uncomfortable. I finally asked if I could let him play with the balls in the room (thank God they had balls there!). He warmed up pretty well, and they each evaluated him for their own specific needs. I felt like he performed pretty well. The one person who was very enthusiastic about him was the PT. She thought he was doing great. The OT and the speech therapist both saw that he had some issues, I think. The speech therapist told me that she noticed he had a slight delay in auditory cognition, but we both agreed he was more delayed in speech communication. So after two hours, we felt that things went well, and Owen did pretty well. I was pretty confident that we could find a good medium for placement for him. Until a week later, when they called to evaluate him at the transition class he goes to with typical kids. I told them that was fine if they wanted to come evaluate him, but really, I was nervous about it. Owen can do fine around us, we know how to motivate him, but when it comes to doing it on his own, it’s different. I know that in Sarah’s transition class he will observe the kids a lot, and not seem to participate much, but then he comes home and learns things. So, I was a little nervous. And, to top it all off, he had just come off the 24-hour flu. So, I went to pick up Owen from class and they were still there, observing him. When they came out, I asked them what they thought. It was the PT, OT and school psychologist who were there. The OT said to me, in a very condescending way, “Well, it’s a sweet program, but you can tell they are very accommodating to him.” Okay, that arrow hurt. Of course they are accommodating, because sometimes he needs direction. He’s also the youngest in the class, too. So then I asked the PT what she thought, and she seemed to think Owen was doing well, physically. Of course, they came late, so they didn’t see him interacting with the other kids and playing ball. Instead, they saw him sitting for story time and a puppet show. When they do the reading and puppet shows, Owen typically pays attention, but doesn’t necessarily get involved and join in shouting out words. So, the psychologist says to me that “he is clearly not where the other kids are in terms of imitating and initiating play. He doesn’t mimic at all.” Well, duh, bitch, we wouldn’t be standing here having this conversation if my child was doing what a typical 3-year old is doing! So, I told them that Owen is more of an observer and will come home and initiate play with puppets or something they played with in school. I felt so angry, and out of control, as if they had a right to judge my child based on 20 minutes of watching him. But I knew that this would happen. I knew that this is what the other parents who have gone through this were trying to warn me about.

They left, and I could only feel disappointment in myself for not having stood up to them and told them to spend more time with my child and then maybe I’ll listen to what they have to say about my child. But, instead, I just swallowed my feelings. After they left, Erik stopped by to see how things went, and lo and behold, Owen decided he wanted to ride a tricycle. He said, “Daddy, ride,” and did the sign to go with it, and Erik and I looked at each other in amazement. Of course, there was a little boy named Charlie who was riding a bike just like it and I know that’s why he wanted to ride. But I was still amazed. For two years, he had been coming to this class and had no interest in riding a tricycle, and suddenly, he didn’t want to get off of it. Too bad the LAUSD people had already left. So that was our first encounters with the LAUSD.

The following week, we went to look at schools. We looked at three schools, the first being a pre-school mixed, which means a smaller class, only ten kids, but all of them with IEPs. The program we saw had ten kids (all boys, surprisingly), and it seemed as if most of them had autism. The kids were all over the place, too. They were unruly, and the speech teacher didn’t seem to be getting through to them. The kicker was when Erik asked the teacher if she had any Down Syndrome kids in her program and she said, “Oh no, they are so low-functioning I never get them in my class.” Okay, can you twist the knife a little more? This is what made me realize that despite all our advances, and all the research that points out that our kids can learn, the assumptions that our kids are unteachable and stupid will always be there. I find that more and more as I navigate this thing called life.

The third school we saw, which was a collaborative program (includes 15 typical kids and 5 IEP kids), was what gave us hope. It was the kind of classroom we could see Owen thriving in. The two women teachers had been teaching together for 20 years or so, and were great. You could tell the kids loved them. One of the teachers is almost deaf, so in a way, we felt that she understood kids with special needs. She also said that because of her handicap, she demands that kids look her in the eye when they talk to her, otherwise, she doesn’t know what they are saying, which I think is an amazing skill to teach a child. The two teachers told us their philosophy is that they treat all kids the same. They expect all their kids to be ready for kindergarten and they don’t cut them any slack (in other words, they don’t baby them). I really liked this philosophy because I think Owen will thrive under teachers like this. Plus, they asked us if we could pick out the IEP kids, and I’m telling you, I couldn’t. I could not tell you which kids were the special needs kids, and they pride themselves on that. I hope Owen can go to this class. So next up is our meeting with the LAUSD for our IEP (so many acronyms!). We will fight for this third classroom setting we saw, and I will be so pissed if they try to tell us that Owen isn’t good enough for that program…because that’s what it’s all about, isn’t it? Is our child “good enough” for society? Enough for today. Have a good weekend everybody.

Finally Posting

I feel like time has just slipped away, and it's already June! I haven't been able to write in my journal, or post online, and I think it's been getting to me. Writing has always been my way of relieving stress, and lately, I can't find two minutes in the day to do it. Plus, I got sick again this week, on top of Tess not feeling good, and Owen, go figure, is finally well. It's been one horrible sick winter/spring, and even though it's too hot already, I'm glad that summer has finally arrived. Maybe the heat will get rid of all this sickness and give us a break, finally.

So I never got a chance to post about the schools we saw. I am going to post later this afternoon.