So some of you have questions:
1. I was looking back through video. It seemed at first that there was a behavior change around the time of Sonja's shots, but then looking more carefully I realized she NEVER responded to her name even before, and though she was more alert and responsive, she manifested subtle characteristics before her shots that became more of a problem later. Very autonomous, walking around in her own world, not responsive to requests. Now it results in tantrums because more is expected of her and she wants things and has trouble both understanding and speaking. Since there are normally huge leaps in development around the time of shots, I can see why some people would think there is a connection when those leaps don't occur, but there continues to be NO EVIDENCE other than anecdotal stories. I totally understand that impulse to protect your child and I have been tempted to give into the hysteria myself. And if a double-blind study comes out showing that there is a connection, I will embrace it. But the studies so far show no connection. And even without the shots, her personality would have been the same.
2. Autumn, I would never "dis" the gluten-free diet! It's just freakin' hard! She's made some progress, so we're going to take her off it to see if she regresses again or if the progress continues. One of Scott's pediatric resident friends said having a new baby in the family and moving can cause a child to regress three months each. So I'm trying to be patient and just show her lots of love and attention.
3. Her therapy starts this week. No word on when for the developmental pediatrician.
4. I talked to Emma from our NY ward, who went through the same thing with her oldest and a newborn. It was so good to at least get some of my feelings of fear and frustration validated. The pressure of feeling you have to interact with them 24/7 to stimulate their development is overwhelming. She helped me see it's not a sprint and that I have to relax, do what's necessary for the short term to survive, then plan for the long term. She is incredibly smart and determined and it was good to be able to pick her brain. Thanks so much.
Thanks to Grandma Lund for these cute matching dresses. Sonja kept running towards me, so it was hard to get this pic.
Natalia showing a bit of chunky leg:
Sunday, October 26, 2008
So some of you have questions:
Sunday, October 19, 2008
First, thank you to everyone who fasted for us. It is very humbling to have people do that for you. It makes us feel our efforts are that much more consecrated towards a worthy purpose even when the chaos seems to be unmanageable.
Early Intervention (state program for 0 to 3) came over yesterday and determined that Sonja qualifies for therapy. She will get one hour a week each of developmental, occupational, and speech therapy. The speech has to go through our insurance, so that will be delayed a month or so. In the meantime, we will get two developmental a week - I pushed for that :) With our income, it will only cost $20 a month and they will come to our house. This is such a relief. Being poor in a blue state rocks! The developmental pediatrician specialist is booked until January, so we won't get an official diagnosis until then.
Our regular pediatrician said from what he observed, whatever she has is a mild form, since he got her to look at him briefly and smile (although it took a lot of effort). He said that it is difficult to tease out all the contributing factors to her condition, since she almost certainly has regression from moving, having a new sister, Daddy going from being a 4th year med student around all the time to being a busy intern gone all the time, and Mommy being super tired and cranky. He said it was good she wasn't getting assessed until January so we had time to "normalize" her environment and provide some stability to get her back to baseline. He told Scott that on his days off he needed to take Sonja out for a half-day Daddy-daughter date so she felt special (YES! It's so much more effective when a doctor says it rather than a nagging wife). She will also be getting a hearing test (I wish that were the problem, but I don't think so.) Also, he said to cut back on fruit to see if that helps with the gut issues. That leaves rice, I guess.
We got a wonderful gift this week of Scott's patients going home, so he got a whole weekend off. He hasn't had that since August. Saturday he took her to the Harris pool. Last time she hated it, but this time she loved it. My mom and I sat on the sidelines. She was smiling and figuring out how to balance on one of those floaty toys. I really have seen incremental improvements from spending colossal amounts of time to try to get her out of her shell. I think she is feeling more secure and loved. I just want to state here that although we have slightly messed up our poor daughter with our crazy life, if she had been normal, she would have developed normally. So we didn't make her this way - I just have to keep telling myself that.
She is saying more words, probably 10 more this week, partly due to my mom being here and me spending more time with Sonja. She is very good at unapplied knowledge. She is still not using words in context to communicate, except for "Go," and "up'n'down." With lots of repetition, she will reply "TWO!" when I ask her how old she is and say, "BIG!" and lift up her hands when I ask how big she is. Here's hoping not every word or skill takes weeks to learn! We are working on her imaginative play - she doesn't imitate adults at all and simply draws in the rug with her little play dolls. Responding to her name is still a pipe dream at this point. But there is progress.
I promise not to turn this into a Cure Autism Now blog, but this is what I'm immersed in right now.
Posted by Ellen at 1:54 AM
Monday, October 13, 2008
Thanks again for all the comments. As I learn more, I will update. I have some calls placed, but no one is calling me back yet! If I have questions, I will definitely be emailing some of you.
So I have been grieving so much, I realized it wasn't doing my babies any good. I haven't been able to eat for days and my milk was drying up. I had to keep watching SNL clips on Hulu to get it to come back. Weird, right? Tonight Sonja went to bed without a fight, so I took Natalia into the kitchen. She cooed and smiled, and I made some brownies (I haven't had chocolate in over a week, which is some kind of a record), and listened to Miles Davis's "Kind of Blue". That album is the quickest way to transport me back to NY. I highly recommend it to relax and feel like a sophisticated adult after being a mommy all day.
I then called Scott at the hospital to talk about the bad and the good of the day:
The bad: Sonja has gone on an eating and drinking strike. She won't drink anything but juice or eat anything but rice and bananas. It's a game of chicken to see who will crack first. I gave in around 6:30 in the evening and gave her juice. I always give in. I may try Kendra's smoothie idea, since she's started eating crayons rather than her hot dog (Sonja, not Kendra). Also, the diet is doing nothing for her GI problems or sleeping, but I'm hoping since they started at the same time (4 weeks ago), we can resolve them both by treating the stomach issues.
The good: We have a book of nursery rhymes and when I got to "There was an old woman who lived in a", I paused and she looked up at me and said "SHOE" in a completely grown up way. She's still in there! Also, right before bed, she came up to me and said, "TEE," and handed me something. It was a lowercase magnetic letter "t" she had found. Neither Scott nor I had taught her lowercase letters. There is a game she plays with lowercase letters on her toy computer, but there's no way she could have taught herself ALL of the letters, right? So I brought up a website that shows each lowercase letter like flashcards to test her. Sure enough, she got about 70% of them. I was really floored. It makes up for a lot of the blank stares or general ignoring me.
Also good - I got asked to the bishop's office to receive a calling. The counselor asked me how we were. I was very honest - I told him everything and that our family needed help (there may have been a few tears...). He promised to let the bishop know and bore his testimony of the atonement. He said that it's tempting to think of how unfair things often are, but that the atonement is the great equalizer. It heals all the pain and leaves us with the sweet experiences. It was good to hear.
And he didn't give me the calling! But I swear that's not why I told him...
Posted by Ellen at 12:31 AM
Friday, October 03, 2008
Thanks for all the beautiful comments. Turbo, you hang in there too.
On the car: the police found it Friday morning and rang our buzzer at 3 AM to tell us. The perp was joyriding, but they claimed someone else stole it and they were just driving it. They didn't know it was stolen. So since there are no witnesses, they can only be charged with a misdemeanor of trespassing in a stolen vehicle. At least they got caught for something. And Geico can sue the guy for the damage, no matter what the charges. Then the police rang our buzzer again at 4:45 to have us fill out the paperwork so we wouldn't have to come down. I guess they needed it to hold the guy. Props to the Chicago police for finding it. I think they assumed we had established a 24-hour command center in our apartment to find the car, when actually we were asleep. There's some damage to the passenger side and the license plates and registration are gone, but that's it.
On Sonja: Amanda brought up a good point about Sonja's skills. She is very good at her ABCs, coloring, and puzzles. She is almost obsessed. Other than a few words and, of course, her letters, she doesn't talk or even communicate or appear to understand what we are saying. There are blank stares, running around, hand flapping, and no responding to her name whatsoever. She appears to be brilliant in her own private world. It's very heartbreaking to watch my beautiful daughter struggle and it's so frustrating having to wait until next Friday to see the pediatrician. In the meantime, to curb her horrible gastrointestinal symptoms (also associated with autism), this week I eliminated all dairy (casein) and wheat (gluten - also in oats, barley, rye, and pretty much everything else). This is very difficult and expensive, but there's some anecdotal evidence this helps some autistic symptoms. No clinical trials yet. It seems to be helping her GI problems, so I might try adding back one or the other to see if it gets worse again. It might end up being as simple as a lactose intolerance. It's difficult to communicate how stressful this has been for both of us, since she doesn't eat meat or vegetables, so that leaves...fruit. I've been successful with rice milk mixed with strawberries and rice-flour pancakes. I have to cook everything from scratch - I'm not terribly into cooking, so it's been interesting. Hopefully she will eventually get hungry enough to eat the vegetables and chicken I'm cooking. She does love hummus, thank goodness. Last night was bad - Sonja screamed and cried until midnight. Tonight it was only babbling and somewhat crying for 2 hours. Not sure if this is diet related or something else. This is uncharted territory, since every child is different. No one child responds the same to all this stuff. On the upside, today she came up to me with a blanket over her head and yanked it off, said "Peekaboo" while smiling and looking at me in the eyes. We played that for a while, something she hasn't done in a long time. What a precious moment that is to me now.
I've realized how important the spirit is in trying to read what my daughter wants and needs. I am humbled at how much I need the Lord's help. I feel completely alone. As supportive as Scott is, he is gone a ridiculous amount of time. I know he's stressed too. Yesterday he was off and it was his birthday. He started the day at 8:00 with going to the auto body shop with the adjuster, going to two police stations, babysitting the kids while I went grocery shopping, and general slavery. At about 10:00 pm, in between the kids screaming, I gave him his card, some jelly bellies, and a kiss and told him I loved him. Cause I do! I promise I owe you one babe! We'll get through this survival mode, and like Elder Wirthlin said, we'll be happier afterwards because of our trials now. I truly believe it.
And for so long after Natalia was born I thought I wasn't cut out to be a mom, with all the tantrums about the baby and the constant stress. After all, tons of women have two kids and weren't getting beaten down like I was. I felt like such a failure and a whiner. Now I know I WAS cut out to be a mom. I was cut out by God specifically to be Sonja's and Natalia's mom. And I feel very privileged.
Posted by Ellen at 10:09 PM
Wednesday, October 01, 2008
Anyone who has been reading our blog this year may have noticed the chaos and turmoil that have ensued. Well, I hope this next bit is the cherry on top and not the tip of the iceberg (maybe the recession will be the iceberg. That way we can all participate). Sonja is developmentally delayed. For a while we thought it was just how Sonja is, but she is lacking enough social and verbal skills consistent with...well...I wouldn't panic and say it was autism, but we're getting her evaluated by her pediatrician at her next checkup in a couple weeks.
Last night I was crying to my mom on the phone and I was thinking that I couldn't take one more thing. I was at my limit. So today we had a little ward children's music group at 9. I really felt it was important to take Sonja to get her as much interaction with others as possible. We got dressed, fed, and headed out the door to...no car. Yep, our car got stolen today. And our car seats and strollers. Crack addicts - can't I get a break?
But the joke's on you. It's due for a tuneup.
Posted by Ellen at 3:49 PM