christmas

I haven't posted much over the past couple of weeks. The holidays have been crazy.

Zoe's out of school on break. We registered her at her new school last week. She'll start January 7th. She's not excited. I keep reminding her that it's only temporary - until we move to Dallas in June. Then she'll have to start another new school. Hopefully she'll be there for a while.

Jackson's growing like a weed. Had his 4 month checkup a week or so ago. I think he's about 14 lbs. now. Everything seems to be doing well with him. He's meeting the developmental milestones he's supposed to meet. So, we just keep watching him. Probably too much.

Holden's doing well. I think the clinic based therapy is helping him a lot more than I thought it would. He's responding well to the therapists and he's learning a lot. Biomedically, I'm pretty sure we have the MB12 shots to thank for his recent improvements. I've seen more with those, than with anything else he's started. If I don't write these down here, I'll forget. So:

12/22/07 - We had a family friend over. She's a Behavior Analyst. Holden was making great eye contact with her. He eventually came to get all of us, led us to the couch, sat us down, and then ran off laughing and smiling at all of us. If we moved, he would continue to do the same thing. And look at us for smiles and laughs. He initiated a "game", and as my friend said ... not only was it a "game", but a SOCIAL game where he didn't need a tangible reinforcer. Just us laughing and smiling with him seemed to be enough incentive to continue. He's never done this kind of thing before, so it was so so great to see.

12/25/07 - Christmas morning was good. He opened a few presents himself, and even was interested in some of the toys. Of course, after a while, he found the paper and would shread it, drop it, lather rinse repeat. But, all in all, he did great. We went to Disney (Magic Kingdom) on Christmas day. We rode: Aladin's Magic Carpet, Pirrates of the Carribean, The Haunted Mansion, Jungle Cruise, Peter Pan, and It's a Small World. He LOVED them all. Laughed the whole time and was really really focused. I didn't know how he would react - but it was so worth every penny it costs to get us there. He had such a good time. So did Zoe - riding Space Mountain for the 1st time (TWICE)! I'm so glad we went.

12/28/07 - ABA at the clinic. His therapist said he did great. Actually got a few verbal imitations out of him. This is big because we haven't been able to get him to this step yet, although it's been a goal for some time. She also told us that we've been chosen to receive part of a grant for hours at the clinic. Hopefully, will be 4 more per week, making his total there to 8 per week until Part C runs out on his birthday (April 10th). This would be so good for him, so my fingers and toes are crossed that we'll hear more about that soon.

As down and depressed as I had been feeling just before the holidays, I feel a little better now that it's all over. Holden did great. He enjoyed the lights, tree, presents, Disney, and Zoe also had the best time. Seeing your kids enjoy the holidays is just the best thing ever. I also started taking Prozac about a week and a half ago. I'm not really sure if it's making a difference. I'd like to think so, but I don't know if it's just the "high" from the holidays and seeing Holden have such a good time. Time will tell, I suppose.

Happy Holidays, everyone!

damn

When we moved to this house (renting) from the last house (also, renting), we moved into a different county. Still, only about a mile from the last place though. We decided to keep Zoe in the school she was in, for a few reasons. She was going through a lot at the time with dealing with Holden's diagnosis and how it changed our family. She already had anxiety about the FCAT which is a standardized test that all 3rd graders MUST pass. Yeah, I know, no pressure on an 8 year old, right? Seeing as they start telling kids about this test in the 1st grade - doesn't help to scare the ba-jesus out of them. And, we are planning on moving after the school year to Texas, so I didn't want to put her in a new school for a year, and then have to put her in another new school for next year. So, yeah, she's been going to the same school and doing great. Honor roll! She brought home a letter from the school 2 days ago, telling us that we had to provide proof of residency in the county for her to continue there. Obviously, I don't have that, so she has to go to a new school. I hate it. She's being such a trooper about it, but I know it bothers her. And it bothers us and we now realize that we should've just done the right thing to begin with - either found another house to rent in our old neighborhood, or enrolled her in the right school before the year began. But, we didn't. Live and learn, right? I'm just so sorry for her. She loves her teacher, is doing so well, and doesn't want to leave her friends. I know she'll be fine, but still. Breaks my heart.

I don't say enough about her on this blog. She's such a wonderful kid, really. I love her to pieces. And the boys couldn't ask for a better big sis!

mouthing

Holden was mouthing EVERYTHING yesterday. I sat with him for 30 minutes on the couch, just trying to keep his fingers out of his mouth. Pencils, toys, his shirt, paper, whatever he could find - was in his mouth. He had OT yesterday, thankfully, and they kept him for about 15 minutes longer than his normal 30 minute session. She gave him a vibrating teething toy and he used that most of the session and was still able to focus on what she wanted him to do.

Speaking of which. She had counting bears and the corresponding bowls. There are 4 colors - blue, red, yellow and green. She put red and green bears on the desk - with the red and green bowls. Using hand over hand, she showed him where the red bears went...in the red bowl. Then he picked out all of the red ones and put them in the right bowl. Then she did the same with blue and yellow. He picked out all of the blue and put them in the blue bowl. I thought maybe it was a coincidence, but she said it wasn't. He moved the other one's out of the way just to get to the color he was working on. Now, if he could just talk and tell us things!

Today he had ABA at the clinic for 2 hours. He's doing well there and I've decided to only sit in for the first 1/2 hour or so of the session. The remainder of the time, I sit in the waiting room. He does okay without me in there. His therapist said he was saying "mama" when I wasn't there. When it was time for him to come out, I went to the door and looked through the glass. He saw me and started running and smiling. Now that we're home he's very stimmy, but I think that's just because of the intense therapy he had this morning. He'll "even" off in a little while, I think.

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.

"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.

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.

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.

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?

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.

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.

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.

ABA

Well, after much back and forth over the last 2 weeks, I think it's finally settled. Holden will get 5 hours per week in the clinic and 2 hours per month at home. Funny, they argue and argue that it has to be provided in the child's natural environment (home), and yet when I offered to have thearpy at home only TWO hours per MONTH, with the rest being in the clinic - they approved with no problem. Uggg. Frustrating.

So, they're going to check their schedules and find out when they can fit him in. Will be going 2 hours on Monday and Wednesday and 1 hour on Thursday.

He's doing really well. I think the MB12 shots are really helping him. He's saying things now. More consistent with signing, and definitely more focused and noticing things. I can only pray that the progress continues...

....aaaand the fighting continues

If there's anything I've learned over the past 6 months, since Holden's diagnosis, it's that you don't get anything unless you fight for it. I've been going back and forth with Early Steps since last Monday - 10 days - about Holden's services. He was approved because there was a NEED. Yet, it's like pulling teeth to get them to send an approval to providers. See, it must be on their terms. The fact that home-based therapy didn't work for us over the past 6 months (3 therapists, only 50% of the hours used due to therapists not showing, and starting services LATE, and, excuse me for being blunt, but crap services), means nothing to them. I was told today by the provider I chose that they could't get an approval because they weren't willing to drive this far to give us home-based therapy sessions. Um, hello?! Last Friday, I was told that the services AT THE CLINIC would be approved. Now, they're telling me that's not an option. That it's a federal mandate that it has to be home-based. Well, wtf people? How come the assistant director didn't know that 5 days ago when she told me all was well and she would send the approval for CLINIC based services? When I got off the phone with her today, I cried. I cried because of frustration at the system. The "No Child Left Behind" act. Cause, honestly, my child is being left behind. My child sits and waits while they get their shit together. My child suffers because they don't have competent therapists through Part C to provide services. My child is left behind because he has autism. It's not fair. I cried because it's painfully clear to me already, at the ripe old age of 2 1/2, that nothing will ever be easy for him. I cried because I feel like I fight so hard to get him what he needs and deserves, as every other kid does, and it's all a bunch of paperwork-federal mandate-bullshit. I cried because this is such a critical time in his therapy/development and he can't get what he needs. I cried because I can't get a straight answer and I feel like I'm on a rollercoaster that won't stop. I cried because I know there are other children who are doing clinic-based therapies (Holden being one of them, for OT) and now they're saying MY child can't. I don't understand this system that's supposed to help our children. I don't understand the "No Child Left Behind" act. Especially when my child is being left in the dust.

Zoe

Zoe decided to join cross country this year. She goes on Wednesday and Friday mornings and she's earned her first "foot" charm she wears around her neck. She gets 1 for every 20 laps she runs. She's also going to start competing in cross country. I'm so proud of her, really. I couldn't ask for a better kid. She brought home ALL A's on her midterm progress report last week. She's joining the Science Club at school, and she's just the best to have around right now. Of course, she's also 8 years old and going through some things. She seems to be much more sensitive now - crying easily, etc. But I guess that's par for the course with 8 year old little girls. I tell her "I love you" more often, and give her big hugs. I think it helps.

sleep. what's that?

I was SO hoping Holden wouldn't have the "sleep disturbance" side effect from the MB12 shots. But, I don't think I'm going to get my wish. Last night, he was up from 2 - 4:30am, and the night before, he was up for about an hour. He doesn't get out of the bed, he just lays next to me and "talks" to himself, or touches me, or laughs, or plays. I honestly thought I was just going to have to get up this morning at 4:30am and start the day. But, just when I thought he wouldn't - he fell back to sleep and I had to wake him up at 8 this morning. He's a little crankier than usual today. And his eyes are red. He looks tired. He's napping now, finally, and I'm going to keep him up tonight until at least 9pm to see if that will help.

I refuse to stop the MB12 shots because I really feel they're making a difference with him. He's more "with us" now. He's laughing, and smiling, and looking at the camera when we take his picture. He's looking at US a lot more than he was just 2 weeks ago. He's a bit more stimmy still, and if I have to take away an object that he's stimming on, he gets really really upset - which is something he wasn't having too much trouble with before. Of course, the sleep thing is a big change for him. He's such a good sleeper, normally, so to have him waking up in the middle of the night and not going right back to sleep is a huge adjustment for us. But, I'm going to ride it out and hope that this side effect will diminish over the next month or 2. My fingers, and toes, are crossed!

worth the fight!

We had Holden's ISFP meeting with Early Steps last Monday. I brought up the fact that he was approved for 78 hours of ABA from April 2007 until October 2007. He only received 39 of those hours. Not because I didn't make sure he was here for appointments, but because it took TWO months to find a therapist to come out to our home. After having to replace 2 therapists, it left us with only having used 1/2 of what he was originally approved for.

I went into the meeting fully expecting to hear that I couldn't get those hours back. I had a behavior analyst (who is a dear friend / old college roommate) present with us, as well as Holden's speech therapist. His speech therapist is recommending an increase from 1 hour per week to 2 hours per week. We were told that in order for that to happen, be prepared to lose an hour somewhere else in his service plan. That normally, they will cut something to increase something else. That didn't go over well with me for obvious reasons.

2 days after our meeting, I got a call and was told that they wouldn't give those hours missed back to us. I was also told that since we were paying for ABA therapy out of pocket (we hired someone since I coudn't find a decent and reliable therapist through Part C), they couldn't approve "duplicate" services. That didn't go over well, either.

I called the program director and left a message. We played phone tag yesterday and I called her back today and spoke with her. After 30 minutes of conversation, I was able to get Holden's ABA hours INCREASED from 3 to 5 per week. Which means, in essence, that I DO get those hours back that he missed. I also fought to have them done in a clinic setting, instead of home, because the home therapy had been so unreliable over the past 6 months. I explained to her that he only has 6 months left in the system and I don't want to spend 4 of those looking for a competent therapist.

So. 5 hours of ABA at the clinic of my choice.

ROCK ON! Although, now I'm kicking myself for not asking for 10 hours.

check up!

Jackson had his 2 month checkup yesterday. He's 13 lbs. 8 ozs., and 23 1/2 inches. His head is "average".

Everything looks good!

labeling

Holden has had 2 MB12 shots, so I'm not sure if this is related to them or not. You never know when you're trying so many things - what works and what's just started "clicking" for him. Regardless, yesterday, he touched Jackson 3 times throughout the day and said "baby". Labeling is a big thing for kids working on speech and language. Especially when they have practically NONE.

So far, the side effects from the shots seem to be minimal. I'm expecting an increase in the next week or so - once he gets a good amount in his system. So far, the most obvious side effect for him has been mouthing objects. He plays with his tongue alot and puts everything in his mouth. Studies show that older children who can describe what they're feeling say that they begin to feel a tingling in their mouth (tongue). Apparently, Holden's feeling that, too. So far, sleep is okay (a little more restless than usual, but not enough to cause any major problems), and the hyperactivity is okay, too. And, although they say to expect an increase in stimming behaviors - Holden's has seemed to decrease the past 3 days. Knock on wood.