11.29.2007

ZOE!

My little girl made honor roll!!! 3 A's and 2 B's on her report card yesterday. I'm so, so, so, SO proud of her. She's really worked hard for it, and with everything going on in her life right now, she's really kicking ass. God I love her.

shock

Last weekend Dietrich was clipping Jackson's nails. I was on the couch, and Holden was on the floor ... stimming on a book. Jackson cried, because, well, he didn't like being held tightly. I noticed that Holden would look at him. He would look everytime Jackson whined or cried. Then, Dietrich clipped Jackson's finger a little and he let out a WAIL. Holden got up, walked over and touched his foot. Looked at him. And then walked away. Jackson kept crying and Holden went back to him. He touched his arm and looked at him, and then leaned in and gave him a kiss. I was in TOTAL SHOCK. Because, see, this means that he understands that Jackson was in pain. He "gets it". He knows that he was upset and he was trying to make him feel better. He had empathy for his brother. I cried.

11.26.2007

"ball"

"ball". It's the most consistent word I've heard from Holden ... since, well, he was 15 months or so. Everytime he sees something round, he says "ball!". Putting up the Christmas tree yesterday, ball ornaments - he would reach for them and say "ball!". Walking through the craft store on Saturday, we walked by styrofoam balls and he said "ball!".

I didn't think I could ever be excited to hear my kid say ball. But, I'm SO fricken excited to hear him say ball!!

ABA

FINALLY. We have an awesome ABA therapist. Last Wednesday thru Saturday, Holden had 6 hours of ABA with the Director of the clinic he's going to. It was great. He responded SO well to her. And she's very comfortable with him, and it's just so good to see him responding to other people the way he does with her. We worked on "stop" and "go". Took walks, and within about an hour, he was able to sign "go" unprompted. We rolled a ball to Zoe. And just let him play outside. He loved it.

We've been at this therapy thing for 8 months and FINALLY have a good team of people working with him. I'm hopeful.

11.19.2007

a better day...

Today was a better day. Things are looking up and I hope I'm coming out of this funk I've been in for a week or so. Sometimes I just need to feel the way I want to feel for a few days and then I can get back to the task at hand, which is to help Holden, be a mom to all of my kids, and a wife to my husband. I feel better.

Tomorrow looks a little like this: 9-11am: ABA for the 1st time at Quest Kids, 11:30-12noon: Speech at home, 1-1:30pm: OT at the clinic. Busy, busy morning. We FINALLY are starting the ABA through Early Steps, thank goodness. It's taken long enough, seeing as he's been approved since October 19th.

We went to a friend's house today to help celebrate another one of my friends' birthday. The friend's house we went to - she's an OT, and also has a son who WAS on the spectrum a few years ago. He's since tested "typical". Anyway, this was the 1st time she's met Holden. I was a bit nervous. Thinking he would just rub his hands on the walls, or find something to stim on, being in an unfamiliar environment. But, guess what? He didn't. He was SO good. He watched TV, walked around, played with their toys. He stimmed for about 20 minutes out of the entire 3 hours we were there. And even then, he was able to be interrupted without a tantrum. Nice. My friend said to me: If I didn't know he was autistic, just seeing him, I would have never guessed. I can't tell you how good that made me feel...

Last evening, the boys next door were playing outside. Zoe was outside too. I took Holden out, and the boys were kicking soccer balls and laughing. Holden was stimming a bit - walking back and forth, back and forth - the same path from our yard to theirs. Then, he saw the boys playing ball, and got a huge smile on his face, ran over, and laughed while he ran through them. It was obvious to me that he WANTED to play, he just didn't know how. I loved the fact that he even noticed.

And, I have to talk about Zoe for a second. She had such fun today with my friend's daughter - who's the same age as her. They love each other. They put on a fashion show for us and it was SO wonderful. I love that kid, I really really really do.

11.15.2007

defeated

I feel defeated. I do. It sucks. The reality is that I will never give up this fight to help my son. BUT. And that's a big BUT. We were scheduled to have a new ABA therapist come over tonight. 1st appointment. She didn't show. WTF people? I want to scream and cry and punch someone.

THIS is the reason I'm even more determined to become a Behavior Analyst. I'm starting classes in January. I know what it feels like to get shit service for your kid who sits and waits for what he deserves. I told Dietrich tonight - PLEASE remind me when I have my own company what it feels like to not call a family, or not show up for an appointment. Remind me what it feels like when you feel defeated. Because right now, I feel defeated. And it sucks ass.

11.14.2007

cracking

I walked to the mailbox today and I realized that I felt like the sidewalk I was on. Cracks all over the place, but somehow, still holding it together. Sometimes, most of the time, I'm okay. I'm dealing with Holden having austism and holding it together because I know my family needs me to. Holden needs me to drive him to therapy, make his appointments, work with him at home, mix his supplements. Zoe needs me to be her mom, pick her up from school and ask her how her day was. She needs me to help her with her homework and talk about her friends. Jackson needs me to feed him, change his diaper, give him warmth, rock him to sleep. Dietrich needs me to be his wife. He needs a partner in life, and someone to be by his side. He needs me to take care of the kids, and take care of the autism, too. So, I do. I know there's no one on this earth who can take care of my kids better than I can. I honestly believe that. But, lately, I feel like I'm going to crack - like the sidewalk.

I'm angry and bitter and depressed. I have so much guilt over wanting more for my life. I have guilt for wanting my son to get better, and not have autism. Guilt for not accepting his diagnosis, but instead, wanting to change it. Guilt for being SO incredibly angry at the universe for making me deal with this. Guilt for getting mad at Holden when he stims, even though I know he can't help it.

I keep telling my friends that I just need a vacation. I tell myself that I just need ONE day. One full day of no worries. I dream of sitting on the beach, in a chair, with a book and a cooler full of beer, and watching the waves at sunset. I dream of being alone for a day. And not worrying. It's a dream, because even if I were alone - I would worry. I would be thinking of my family. Is Jackson okay? Is he feeding from the bottle ok? Is Holden doing okay? Is he stimming? Did he SAY anything today? Does he miss me? Is Zoe okay? Is she playing with her friends? Is she helping out while I'm away? Is Dietrich okay? Is he stressed because the kids are driving him crazy? Is he frustrated? Is he okay with not taking a minute for himself?

So, the reality is that I don't know when I'll ever have one of those days to myself. Days to only worry about me. I think it will never happen, and who knows, maybe it won't. My family means everything to me, and I have to think of that on days like today, when I feel like I'm going to crack - like the sidewalk. Because if I do crack, who will take care of everything that needs to be taken care of?

11.13.2007

HATE

My husband told me the other day that he found some pictures of me in a box. He said I looked so "happy" in those pictures. He said he hasn't seen me that way, ever. I told him that the truth is that he has seen me that way, but it's been so long, he probably doesn't remember. I'm happy with the idea of my life. I have a husband, 3 kids, and I'm able to be a stay-at-home mom. I love that. It's what I've always wanted.

Now, throw autism in that story and it just screws it all up. My life hasn't been the same since we realized something was wrong with Holden. Sometimes I wonder if it ever will be? If it will ever TRULY be good again. Will it? I don't know.

Today, everything is consuming me. Anxiety is killing me. Holden has been stimming nonstop for about 3 days now and it's breaking my heart into a million tiny pieces. I want to cry all the time. I have a hint of the feeling I had 7 months ago when he was diagnosed. When he goes through these modes, I also go through them. I don't lose hope, but I curse the universe. I've had other people say to me that I should accept him for who he is. And love him for who he is. My response? I love my kids more than I love life itself. I would kill someone for them. I would die for them. But I find it extremely difficult to accept autism. To accept him this way. This is NOT my son. The stimming, the sensory seeking behaviors, the frustration at not being able to talk - that's not my kid. That's autism. And I fucking HATE autism. I hate that I have days where I feel like I don't even know my own son. That I don't see his real personality, and all I see are odd, repetitive behaviors. I hate it that I KNOW he's in there and wants out and can't do it on his own. More than anything else, I hate what autism doing to my son, my family, and my life.

11.12.2007

Yeast

It's back. The yeast. I figured this out on my own. Over the past week, he's had a few signs, and over the past 4 days or so, he's been extremely stimmy. Much more so than he's been in a while. I called his doctor and talked to the nurse today. She's going to call me back tomorrow after she talks to Dr. Berger, but she anticipates that he'll stop the Nystatin and put him back on Diflucan for the yeast. Poor kiddo. I just want to hug all of this away for him. I wish that were possible.

Despite the problems with yeast, he watched the Wiggles today and actually danced around with them. He laughed and played. He wanted to be outside, where the weather was awesome (who wouldn't want to be outside?!). He said "ball", "hi", and ... smiled at me more times than I can count. I'm thankful. Yet, tonight when I go to bed, I will still pray for a miracle, as I do every night.

11.06.2007

still waiting

We're still waiting for Holden to begin his ABA at the clinic. Still. Waiting. It's crazy how much red tape you have to go through in order for your kid to start receiving the therapy he was approved for ... and clearly needs. If I've learned nothing else throughout this whole process - it's that nothing will get done unless I do it myself. I've left 2 messages today, so hopefully, we'll get him scheduled soon.

I just scheduled an appointment with Dr. Berger for December 18th. He'll have a blood draw to check his levels (hormones, etc.) to see if the latest supplements are working. He'll also have the IV chelation challenge test. I'm nervous about it, but I also know it's the only way we'll know what we're dealing with and how to "fix" it. We have an appointment to speak with his doctor 4 days prior, so I'll get all of the information on what to expect then. Did I mention I'm nervous?

In other news - Jackson's making sounds now. Smiling. Laughing. Growing like a WEED. He really feels like part of the family now. Zoe's on her 6's in her multiplication table. She has to have them mastered through 10 before Winter Break - in December. She's working so hard. I'm so proud of her.

Off to OT. More later.