i don't know

I don't know if the little "fits" that Holden's throwing are normal, everyday, typical toddler "fits". Or are they due to the autistic behaviors? He'll be 2 in 2.5 weeks. So, one should expect that he would start doing toddler things, right? Like tantrums, for instance. But, how do I know if it's normal behavior, or if it's because he's resistent to change or he's over stimulated? Today we went to the park. Before we left the house, I turned off his Baby Einstein video and he cried. Cried in the car for about 30 seconds, and by the time we were out of the driveway, he was fine. We went to the park and I let him swing for about 15-20 minutes at which time he looked and smiled at his sister and another little girl who were swinging next to him. I swore I even heard him say "issy" for sissy. But, I don't know for sure. I take him and let him walk around a little, where he ignored the kids, and walked through the rocks and mulch. After about 5 minutes, I told him we had to go. I picked him up and he started squirming - trying to get down. Then came the crying (as he could see we were walking towards the car), and the screaming. Crying and screaming when I put him in the carseat. And once we were out of the driveway of the park, he was done. I wondered all the way home if this was just a normal toddler meltdown, or if it's part of his autistic behaviors. I DON'T KNOW and it's frustrating as all hell.


Optimism, even just for today.

We went to OT this morning. When we sat down, the therapist said she wanted to talk to me. I cringed at first because I had no idea what she wanted to "talk" about.

She told me that she and Beth (Holden's Speech therapist) had talked about him and his progress. She said they were both in agreement that his progress had been wonderful, seeing as he'd only had 4 sessions each. They say he's interacting a lot more with them than they thought. She said she realizes that Holden came in for the evaluations and therapy, due to the diagnosis (although not official, obviously) of "autistic tendencies / behaviors", but she said they really think he will "beat this diagnosis". She said she thinks they are going to be able to "get him out of it". She was quick to say that it's clear he has sensory problems and that's something that will need to be worked on at home and therapy. And he obviously does still have autistic behaviors, but she's optimistic in thinking that he can overcome this and eventually be mainstreamed into school, etc.

I know I can't read too much into this good news. Because I know that realistically, our son needs a lot more therapy and it's a long term thing. BUT, I've noticed improvements in his behaviors (eye contact, interacting with his sister more, showing emotions (kissing me/hugging me), socializing with me) over the past 3-4 weeks. He's made a lot of progress, compared to where we were when we started this whole thing over a month and a half ago. So it was good to hear that someone else (a professional) acknowledges his progress, too.

So, for today, I am happy. I am optimistic. Everyone says ... take one day at a time. Well, I'm doing that, and today I'm going to be happy and optimistic about Holden's therapy and progress. Tomorrow may be different.


Note to self: stop watching TV and reading on the internet

Last night my mom called to let me know that Larry King Live's show was on Autism. I had missed the first 40 minutes of the show; but I turned it on anyway. I saw they were going to replay the show at midnight, so I taped it. After watching that last 20 minutes of it though, I realized that maybe I shouldn't have. Today, I toyed with the idea of hitting the play button on the remote when I passed by it on the list of shows to watch. Finally this evening, while I was rocking Holden to sleep, I hit play. I wish I wouldn't have.

Last night before bed, I emailed an internet friend of mine who also has a son with autism. I rambled on and on about how some days are really good and I'm really positive and so upbeat and just think that nothing can stop us! How Holden's therapy is going well and I need to focus on making him better. But then ... BOOM!, out of nowhere it hits again. The helpless feelings. The depression. The knot in my stomach that reminds me of that feeling I had about a month ago when I didn't eat a full meal for 2 solid weeks. I get that same overwhelming feeling of anxiety all over again. How does that happen?

She emailed me back this morning and I couldn't thank her enough. She said all the right things. She explained things in a way that makes me hope that someday (soon), I can be where she is with all of this. I can be on a mission to help my son, and live in the present and not worry so much about the future. When she explained the reason why shows are geared towards the more depressing and somber side of autism, it made complete sense. They have to. In order to keep the awareness and to keep people listening to this terrible disorder that's affecting so many of our kids, they have to tell the stories that tug at your heart. Because, if they told the stories about how some children respond well to therapy and even eventually end up leading fulfilling adult lives - then why would people donate millions of dollars to research? They wouldn't. It wouldn't be important enough because people aren't "dying" of a disease. She said it much more eloquently than that though.

So, I've read her email 3 times today. And I emailed her back and told her how I so desperately wish I would hurry up and get to the point where she is in my own journey.

Late, but worth it.

I'm posting this late - our anniversary was 2 weeks ago. This is what my husband wrote in the card he gave me:


It's been hard the past few months and it will get a little more difficult because we are going to start expecting results; if those results aren't to our liking, or aren't fast enough, we'll get upset or frustrated or both. Holden is lucky, I don't know what he would do without you. I don't know what any of us would do.

I know you think you're weak, or that you have been weak with this whole thing with Holden, but you're strong. Stronger than I could be. I couldn't handle the day in, day out like you do. I don't know how you have managed as well as you have, especially being pregnant.

You make so much possible for me and our children. They don't make your life, but your life makes them and they, or we, are lucky.

Happy 2 years,

He's an angel.



Holden started his 3rd week (I think, or maybe it's his 2nd full week) of OT and Speech this week. We had a dual session yesterday - where the ST and OT basically "gang" up on him. Do both OT and Speech in the same session; to try and keep him focused. It helps. He enjoys OT the best simply because he gets to swing. I guess i'ts calming to him. Anyway, both therapists told me that they couldn't believe how much he's opened up in such a short period of time. His eye contact improves daily. His play skills (puzzles, shape toys, magnadoodle, etc.) are getting much better. Meaning, that instead of just lining up the coins that go into the singing piggybank, he actually puts them IN the piggybank. He knows what to do with some toys that he didn't know what to do with before. He's communicating with us by bringing things to us now. He never used to do that. I would always have to guess and look for his sippy cup to see if it was empty, etc. Now, he'll come to me, take my hand and shake his sippy cup (empty) and put it in my hand. Or, if he wants to watch a baby einstein video, he'll bring me the remote, take my hand and put it in my hand. Or, if he wants to be held, he'll take our hands and put them under his arms to be picked up. It's good. But, he's not trying to sound out the words like he used to. I talked to the ST about this and she said that we still need to encourage him to make sounds. Especially if it's sounds that we've heard him make before. But to be careful not to push him into a point of frustration where he shuts down. So I'm working on that at home with him. At least, as she said, he's trying to communicate with us and he realizes that he gets something when he lets us know he wants it. I may talk to them tomorrow at the next session to discuss using PECS since he's bringing things to us now. Although it may still be too early. Oh, and he just reminded me - he's laughing at things on the videos now. If animals are being silly, he'll laugh. If we clap for him - for doing something good - he'll smile. He's realizing emotions which is great. He's flipping through a book now. Not really looking at the pictures yet, but he's much more interested, since the ST is reading to him a lot in the sessions. I'm also reading to him a lot at home. At least 2-3 times a day. We read Eric Carle books, which she said are great, because the words are repetitious. I'm so glad I started him in therapy now. At least I feel like I'm doing something to help him and improve his little world.

I'm 18w1d. Baby is growing and is about 1/2 a pound now, according to the last ultrasound. In 3 weeks, I have to go back for another ultrasound and to have an EKG on the baby's heart. Doc says it's "standard procedure" when diabetes are involved. I hope he's being honest. Oh, and all prenatal labs came back negative, which is good. Pap was negative. So, things are moving right along. Still haven't felt a lot of movement, which is strange to me. With Holden, I felt it VERY early on - like it was constant enough that at 17 weeks when I didn't feel anything for a few days, I panicked and went in for an appointment to hear the heartbeat. I've felt this little guy, but not often. Maybe once a day and it's very very slight. I'm wondering if it's just that my mind is so preoccupied with Holden and Zoe and other things that I'm just not paying attention? Maybe.

Zoe's doing so good in school. Honor roll. Yes, our kid made the honor roll on her last report card. So, so proud of her. So much so that she earned herself a Nintendo DS. She's such an awesome kid.


my goodness, i could go for a BIG glass of wine

So I'm 17 weeks pregnant. Yesterday, I had an appointment with the high-risk doctor. Ultrasound looked good. He came in and started looking at the baby's heart. Slow motion. Look again. Slow motion. You get the picture. He told me that in 4 weeks when I come back, they'll do another US and an EKG on the baby. I asked him if that was a "normal" test they did and he said that with diabetes being involved - yes. They do an EKG around 20-24 weeks on the baby's heart just to make sure everything's fine. I'm going to trust this guy and try not to give it a second thought, other than it's just normal procedure. Cletus is measuring right on track (17 weeks) and is about 1/2 a pound now. I've lost a total of 11 lbs since 8 weeks pregnant, and he didn't seem concerned, so I'm not going to be, either.

Last weekend, we all had the flu. All. Of. Us. All 4 of us. Stuck in this house together, puking and shitting our brains out. I'm not kidding when I say I was puking every 30 minutes for the first 4-5 hours, and shitting in between. Try doing that AND taking care of 2 kids who have the same thing. Not fun. We all slept out in the living room - kids on the floor with towels and me on the couch, wide awake every time one of them moved. Dietrich slept in the bedroom because he didn't start with all the yuckies until around midnight. Today's Thursday and we're just now getting back on track here. Thank god. Whatever it was - sucked major ass.

Holden finished his 2nd week of therapy today. He's now in ST and OT twice week (30 minutes each), so 2 hours total. I'm learning some techniques to do with him at home and he seems to be responding much better this week than last. I guess it takes some getting used to at his age. He's using the sign for "more" all the time now. Although, he uses it more for "I want", instead of just "more". He's also making much better eye contact, which is a good thing. I really think when he starts talking (hopefully soon), he'll be a much happier little boy. Right now, he gets extremely frustrated when he can't communicate what he wants.

I'm doing much better this week. I think the being sick thing was a blessing in disguise. I remember thinking, while we were all feeling near death, that we're incredibly lucky to have our health. Yes, this autism "thing" blows, but, overall - it could be much much worse. My kids are healthy and happy, and even though they may have some challenges to overcome - don't we all? Also, Dietrich's friend at work was telling him about his 9 year old nephew. He started having "fits" of vomitting and shaking - kind of like a seizure, and they found a cyst in his brain. I just. Wow. My heart goes out to his family. I know there's no cure for autism and I know that it's something we'll live with forever. But, with hard work and dedication - I think Holden can overcome this and continue to be the happy little boy that he is now.

Now, don't get me wrong - I'll be crying tomorrow. About something. Some days are good, some are bad, and some are just plain hormonal.


16 Weeks & More

Today I'm 16 weeks pregnant. My quad blood screen came back negative for all of the genetic problems they check for, so that's good. My sugars suck first thing in the morning - my fasting levels are high. Which means, I'll have to start insulin injections at night (soon, I just know it). I've lost 9 lbs total since my first appointment at 8 weeks. Which, normally would thrill me to no end.

Since my last post things have been hectic, to say the least. There's been a lot of stress, worry, tears, lack of eating, sleepless nights, and more tears. In the past 1-2 months, we've come to realize that Holden is somewhere on the autistic spectrum. I saw somewhere because we haven't been given an official diagnosis, other than he has "autistic tendencies". In the past 2 weeks, we have seen his regular pediatrician, had a PT evaluation, an OT evaluation, a Speech evaluation, and spoken to our family care coordinator with the Early Intervention program.

Today is his first day of Speech Therapy. He can only do 30 minutes sessions because of his age, so today, from 4-4:30, the journey begins. Thursday, he will have Speech and OT. Luckily, he wasn't recommended for PT at this time. He's in the 19m-27m age level for PT; so, that's a good thing. One less thing to focus on. I have no idea what to expect with these 30 minute sessions. It's hard for me to imagine that therapy can take place in 30 minutes. But, I'm going to leave it to the experts and hopefully I will learn a lot in the process.

I've been worried about Holden for a few months now. He was right on target with developmental milestones until around the age of 15, 16, 17 months. He had a few words in his vocabulary - not many. "Mama", "Dada", "Bella", "Yes", "No". During those 3 months (from 15-18), he lost those words. Actually, he became very quiet during that time. Not a lot of babbling, or noises of any kind. He picked up the babbling again around 18 months and we thought for sure that would be the turning point. That he would start talking and having conversations with us. It didn't happen. We thought maybe it was just because he wasn't exposed to other kids, as I'm a stay-at-home/work-from-home mom. But, daycare costs weren't in our budget, so we decided against putting him in daycare. We thought maybe it was because he just watched a little too much Sesame Street during the day. We thought maybe he was just a boy and a "late bloomer" and would start talking soon. It didn't happen. In the meantime, I googled "Speech Delay in Toddlers" and noticed that practically every link available took me to a site for autism. I began to read the signs and symptoms and realized that maybe it wasn't just a speech delay afterall. He had signs. He had symptoms. My heart fell into my stomach.

Holden doesn't have a lot of eye contact. More with me, and his dad - than with strangers. I would say he makes eye contact maybe 50% of the time that he should. He responds to us calling him maybe 50% of the time as well; although that's delayed. I'll call him and he won't respond for 10 seconds or more. He loves stacking his blocks, taking them down, restacking them. He never brings me to his toys, or shows me anything he may want, or need. He doesn't play with his cars like he should. He plays with them, but only to put them in a pile in his lap or crawl over them. He likes books. But he likes to turn the pages, not necessarily l0ok at the pictures or let mama read to him.

With that being said, he loves hugs. He loves to be held and for me to rock him any time of the day. He has the biggest, most hugest dimples when he smiles, which has been more frequent lately. He loves bubbles, and has even learned a few new words in the past few weeks. He says "bubbles", "dada", "didi", "bibi", "juice". During the Speech evaluation last week, she tried to teach him the sign for "more". He now does it, although sometimes it looks more like he's clapping than the real sign for it. But, I know what he means. He listens when I tell him to "get down", or "stop", or "no", so I know he hears me, and understands what I say. I've been told by other moms that it sounds as though he's on the mild end of the spectrum. Which, is good, and I know I have a lot to be thankful for.

But, some days, I'm overwhelmed by this label that's soon to be put on my 2nd born child, my little boy. I know the diagnosis is coming, as we have an appointment with a developmental pediatrician on April 17th, followed by a 2.5 hour evaluation by the Early Intervention program on April 19th. I know that it won't change who he is. I know he'll still be my sweet little boy that hugs me for no reason and gives me kisses. I'll still sleep in bed with him each night and hold him close, as I say a prayer that he will be protected and that I'll somehow have the strength to get through this and give him everything he needs to have a happy and fulfilling life. But, I worry. I worry every waking moment of every day, and every sleeping moment of every night. I wake up worrying, I go to bed worrying, I wake up in the middle of the night ... worrying. I worry that he won't experience some of the joys of life. That he won't grow up and have friends, play soccer, get his drivers license, have a girlfriend, go to college, get a good job, get married and have kids of his own. I worry because of all the negative things I read about kids who are on the autistic spectrum. It consumes me, literally. I can't watch my favorite TV shows at night without thinking about autism, and worrying about him. I just sometimes feel like I need a break. A break from thinking. Everyone says "have faith" that things will work out. Or, "you're doing all you can". Or, "you caught it early and he'll be fine". The truth is that no one knows if things will work out, or if he'll be fine. I want so desperately to be positive about this. I want to feel okay with it. I want to be able to accept it. And not watch other moms with their sons cross the parking lot, or watch boys walking home from school when I wait to pick up Zoe each afternoon, and ask "why me?" I want to know that there's a purpose for this. That it's happening for a reason and goddamn it, I want to know what the reason is. Why my precious little boy has to struggle and why things can't just come naturally for him. Why.

I've always known how much I love my family. But, in the past month or 2, I've come to realize that my kids and my husband are truly my life. My family is my support system. My husband is my rock, and my shoulder to cry on, and my best friend. My kids make me feel like the luckiest person in the world to have been chosen to share their lives. Even my parents and my brothers, and my in-laws - they've all shown me what family really means. I guess sometimes it takes something like this to realize how many blessings we have in our lives. I have so many. So, so many.

I sometime wish this roller coaster of emotions would just stop and let me off.