Riley is doing very well with expressions. We have been working on sad, happy, angry, etc. He was looking at a book yesterday and applied it to something other than his own situation, and other than what we have worked on with "smiley" faces. He said "This guy's happy. Yep, this one's a happy guy."

He also said, while picking up legos (like I asked him to!) "I see some more! There's some more. I put them away."

We also went to a playgroup today. I brought my 12 year old niece along to help. It went very well. While he didn't play "with" the other kids, he tolerated them being around, he tolerated playing in someone's basement (huge!) and he did fine with a pretty big group of people. These were good friends of mine who have known what we've been doing all along, I just haven't seen them in a while. One of them was dumbfounded. Just amazed. It felt so good inside to share how far Riley has come with others. It felt so good to be able to have a third person see what I've seen.

Best of all is knowing that he is, in fact, healing.

Transitions

On the day of our last HBOT session, I met with our DAN! Dr while Riley went into the HBOT with my mom. We discussed a lot, but my brain was fogged. It was one of the first snowstorms of the year and I knew we’d be driving home in it. He’d just handed me this paper from Genova Diagnostics that had all of these words I’d never seen before, and my kids’ ranges were out of whack on a whole bunch of them. The words “metabolic” and “mitochondrial” screamed at me. I had a really hard time concentrating on much else. It was just a blur. It ended up that several of the things we talked about didn’t end up on our treatment plan notes. So now I’m scratching my head going, “Did he say L- Carnitine or L-Arginine?” From the things I could remember I recently put in an order at ourkidsASD.com and that should arrive any day. Dr Van Dyke also gave us a sample of Enhansa, which is Lee Silsby’s curcumin supplement. It is so hard to get all of this stuff mixed with food. Even if this one works, how the hell am I going to get in into my three year old? The poor kid, I don’t think he eats much of anything without an enzyme sprinkled on it, or a probiotic swirled into it.

I also made a few appointments… with our family Dr, one of the ABA programs here in town, and with an audiologist. I was on a weird roll because HBOT was over, like suddenly I was going to have all of this free time to work on other things. I am on call again mid to late January, and though I haven’t attended a birth for two months, I’ve been working, meeting with clients, etc. So our family has been balancing a normal workload, plus all of this.

So, today was one of those appointments. I took him to see our family Dr. Our DAN! Dr, Dr Van Dyke, had suggested having Riley’s vitamin D levels checked. I also read a few places it was good to check out basics like CBC, thyroid panel, metabolic and system functioning. I also wanted to check out his urine and do a strep swab.

The last time Riley saw our family Dr was last November. It was right after he’d been evaluated with Birth to Three. We had no freaking clue what was going on then. I had a 5 month old baby with me, trying to wrangle a 2 year old who wouldn’t let anyone come near him, would not cooperate with ANY of the normal Dr things (weight, height, checking ears, etc) and was obsessively turning off and on the lights in the room. I’m nursing, with my gut hanging out, as our Dr is blowing off the report from Birth to Three, and centering in on my parenting skills. I’ll never forget it:

The very first subject was that the report was faxed over from Birth to 3 last week. He brushed off the "diagnosis" and treated me like I knew nothing about sensory integration. He basically told me that Riley's behavior was part personality, part parenting. I'm not sure how I could parent in a way that made him shake uncontrollably with fear when he's in the basement as the dryer is running, but okay. He was going on and on about discipline, and once I realized he was judging my parenting, everything that came out of his mouth just made my blood pressure rise even more. I let it go at first, we discussed Riley's eczema, and then he brought up again how mothers with more than one child have to be much more strict with their children.

I was done. I said I thought he was a great doctor, but that I come in there for MEDICAL advice, not parenting advice. I told him that I was doing the best I could, and I didn't apprieciate his judgement about my parenting skills.

BOTH KIDS were crying during this time. Riley because he hates people messing with him (the Dr was trying to look in his ears and he was freaking out) and Jack was tired. This guy gets a little 15 min glimpse of chaos and thinks that this is what life is like for us.

I also told him that my family has a history of sensory problems, and that my sister is bipolar and I grew up with that as part of my life. It puts an unbelievable strain on a household to have a special needs child, no matter the capacity. It's harder on everyone. I explained I wanted this addressed while he is small, so that it doesn't interfere with learning, etc. He understood where I was coming from, I think. He looked really embarassed when I started talking about that, and said that he had no idea we had that history in my family. Well, it was IN THE REPORT from Birth to 3. Apparently he didn't read that part.

He ended up apologizing and actually sent a formal letter to me, apologizing for his behavior. My kids didn’t need to go to the Dr for much of anything after that. We stopped doing well baby visits and stopped immunizations. I have to admit it took a while before I felt ready to go back. He has always been great when the kids are sick, was great about letting me set our own immunization schedules (thank GOD he didn’t talk me into MMR, Hep B, flu shots, etc) So I was willing to give him the benefit of the doubt. We have history with him and I really didn’t want to switch Drs.

I took Riley for the appointment today. I talked to him about it, explained to him what we’d do. When we got there, he had initial anxiety about a new place, but soon he was just fine. I talked him through a lot of it, and was so proud of him. He did great. Part of it was that the Dr and his assistant knew Riley had autism and honored his special needs. They knew to be patient with him. They knew not to rock the boat if things were going okay.

Thankfully, our Dr was fine with running all of the tests I asked for. He neither condoned nor condemned the treatments we were doing. He started to say something about not being able to give advice and I said “Well, we see Dr Van Dyke for that. We see you for this stuff. You both have different roles.” I was very gracious and thanked him for helping us with these tests.

The urinalysis was easy to get, Riley has peed in cups before. That part was fine. The blood, not so much. He did cry. But it was different. It wasn’t like he was screaming bloody murder and didn’t know what was going on. He was completely aware of what was going on. He talked about it on the way home and tonight. He really did get it. They were able to get three of the tests but we have to go back for the Vit D. Of course, the one I wanted most. Oh well, it was too much to put him through. I was just amazed. He did so, so well with all of it.

I had to get over the anger at "mainstream medicine" and just do it. It wasn't the Dr's fault. It wasn't the clinic's fault. It's a bigger picture and I can't be mad at them. Although, I have to admit it was strange being in the same room where Riley was given the shots that may have led to this.

We’ve noticed the repetitive, compulsive(?) behaviors are still lingering, even though not as pronounced. He’s really been into turning off and on water, opening and closing doors, light switches. These are things he hasn’t done for months. We’ll see if it’s just the adjustment after HBOT or if we need to look into doing something else.

Today we also went to send the porphryns testing to France. This has been a fiasco. I ended up having to drive to the hyperbaric center to get a new test kit. Then, got another sample, took it to the post office, only to be denied shipping it. It’s just been a big pain. It’s been one that’s been hard for me to send anyway. One of those things… do I really want to know? I do, but it took a lot just to get it all together. Our world stopped for a month with this HBOT thing. Now we’re playing catch up.

I’ve been doing a lot of reading and just have to stop sometimes. My head starts spinning about strep and aluminum, stealth viruses, vaccines he had that shouldn’t have been given together (Dtap and Mumps) wondering if he could have been born with yeast, bacteria, metabolic issues, and so on… it is just never ending. Some days, I have to just breathe, and try to refocus.

I’ll have to update our protocol sometime, I know some people do lurk here and like to know what we are doing. It’s going to be changing again, so I’ll be sure to post it.

On a last note, an extremely happy one. Riley is making changes consistently. My husband and I were just talking tonight about how far he’s come. Even the Dr commented on how different he was. He’s saying things he’s never said before. He’s having conversations with us. He’s able to understand so much more and has been able to follow directions a bit better as well. Physically, he’s very close to being able to use scissors, and has been doing wonderfully at potty training. I also gave him a haircut this last week, and he did pretty well, compared to what he used to do. Dare I say, he tolerated it?

It's really, really difficult, but it is amazing to see him like this. It is such a blessing.

Mission Completion

HBOT was complete on Tuesday. Phew. Moving on.

I've had a lot of things going through my mind lately. I am sort of at a loss for what to type here, so I haven't been. Things have been intense, in good ways and not so good ways. Up and down and all around. I think I'm doing pretty well with all of it, I just don't know what to type when I sit down.

Riley is doing very well overall, but has had a rough last week to ten days. I suspect there were some bacteria overgrowth issues going on, as he started doing some of the repetitive behaviors he hadn't done much of since we started the GFCF diet. When you see your child regress, it's incredibly difficult. It was a matter of maybe a week at most but I started feeling really down about everything. And then we had today, where he was chattering and very much "here." So, perhaps it was a period of die off, or some kind of adjustment. Whatever it was, it seems to have passed now.

I need to write more but I'm just wiped. I think we're all still recovering from the major life overhaul that was HBOT.

I met with our DAN! Dr on Tuesday and we're doing a few new things soon. I still haven't sent the urine for the porphryns testing. I need to do that soon. The urine testing for the metabolic/organic acids, etc results came back. I think that was a big, big part of the funk I've been in the last few days. There were obvious, black and white, abnormalities in some those areas. It's been a lot to take in. I suppose slowly but surely the denial does lift and you realize that there's no mistake. There is something physically atypical with my child. It seems like this would be a good thing, and it is good to know what's going on to better know how to treat it. But it's like a big punch in the stomach in many ways. It just hurts.

More to write but slowly fading. Perhaps when I'm better rested I'll have more thoughts.

Putting it into words

Riley watching Daddy cut down the Christmas tree!

Riley's interactions, language, and awareness are continuing to increase. A few things:

Tonight he had been stimming for about 20 minutes non-stop. Going from thing to thing, like the Tazmanian Devil. I was losing my cool. Eventually when he got into the same thing for about the 50th time, I got angry with him and put him on the couch in a time out. I explained to him that he needed to sit here because he wasn't listening. He then went back and was saying phrases about what just happened that were completely in context. He then stuttered a bit trying to get it out, and said:

"That make Riley's mama so mad!"

I was a little shocked but just kept the conversation going and said, "You didn't listen to mama, and mama got mad. You need to listen to mama. You need to say you're sorry for not listening." I have had this conversation with him at least a billion times (okay, maybe not, but it feels like it) and he's NEVER responded the way he did. He said:

"Sorry, mama. Yep. Sorry mama."
My husband was in the hallway and came in the room, like he was shocked too.

But this wasn't the first time we've been shocked like this. With biomedical treatment, we've had these moments several times a week. Sometimes several times a day. Lately it's been several times a day.

Just the other day Riley started saying "Need kleenex, need help" when he sneezes, and then when I help him wipe his nose I ask "Is that better?" The other day he said Yes, that's better"and then yet another time simply said "That's better" without me asking. He also told me earlier today, and I quote, "I sneezed."

Yesterday with our OT, he was answering questions very well. Even yes and no questions. He really enjoys making games out of it (ie, "Riley, is the sky pink?") and will ask you, too. It's very cool to see that blossoming.

The changes with HBOT have been amazing. I described it to someone else today... as if the diet, supplements, MB12, enzymes, etc had set the wheels in motion, and HBOT seems to have just sped it up.

Today I had a meeting with Riley's OT and teacher. I was starting to get a little frustrated with some of the sessions with his teacher, that he was spending so much of the time stimming and doing repetitive behaviors. We addressed some things today and I'm glad we did. Things are going well for him, he's doing great with his IEP goals, and our teacher stresses that he has some great concepts for a kid his age, autism or not. He knows his colors, shapes, can identify some letters and numbers, etc. He has a lot of strengths in that area.

So tomorrow we go for HBOT dives 25 and 26. I have to drive alone for the first time since the first week we were doing it, since DH is actually working tomorrow and Friday. (He's been laid off, on and off for a few weeks) DH actually took him alone today which was really nice. My mom did last week, too, while DH and I took care of some errands.

I think next week I may schedule a time to talk with Dr Van Dyke. We should be getting urine results soon, and last week we were chatting in the playroom at the center and he mentioned getting Riley's vitamin D levels checked.

Another ramble from me, perhaps a bit more clarity with this one!

20 of 40: Halfway

So, I kept thinking I'd blog when I was "not as tired" but that time never came.

HBOT is exhausting. And last week, I nearly perforated my ear drum, so my husband and mom did all of the sessions from Tuesday-Friday. I went in for the first time in a week this morning, and it was still tedious and boring. But my ear drum didn't explode. :)

But, worth it. I think the biggest thing we've seen has been language. Riley is talking a lot. Example: When I wipe his nose, and ask "Is that better" and he responds "Yes, that's better."

He's been doing well with conversations, too. Back and forth, answering questions. He's been saying "please" and asking "Can I?" on occasion.

Tonight he was pretending that a doll was "going to HBOT." He asked the baby "Are you ready, baby?" (This is what the hyperbaric tech guy says when he comes to get Riley before a session) I thought it was so funny that he said it in the right context.

He's really into Christmas right now. If you ask him about Santa he'll tell you "Santa come, bring presents. Santa come, bring toys." He really enjoys the Christmas tree, and watching out the car window for houses with Christmas lights out. We have visited a local display and both kids get a kick out of it.

The one hard thing about HBOT has been the hyperactivity/stimming increase. A lot of times when we start new things, Riley does a lot of stimming in the beginning. I am told this is a good sign. It's difficult, though. The other day he stimmed through virtually an entire therapy session (I say therapy loosely, this was his early childhood teacher, and truthfully I am not happy with that at the moment) I hope as time goes on it eases a bit.

Things are really sucking for us financially at the moment. But, there's no use in blogging about that. It becomes sort of redundant to hear it from every parent who's child has autism.

Once again I just blogged with no rhyme or reason, so I hope this makes a bit of sense!