Got this in the mail from our Governor's office today, with a note from public health about where to acquire immunizations. This is the second time we've gotten something about immunizations, and Oliver is not even 10 weeks old. I guess if a child exists and doesn't see a physician, parents are neglecting them. *sarcastic eye roll*


I think I'm going to boycott Hallmark. And if I had the brain power, I might send a letter to both of them. This is bordering on harassment.

Oh, what a difference a week or two can make.

First, I got over my fears and Oliver, our new baby, saw a physician. Actually, she came for a home visit. I feel so lucky to have found this one. Family practice with board certifications in lactation and holistic medicine. She said she's seen families doing the GFCF diet and she seemed to know lots about it. I could go on and on about her, but she fits our family. Biggest plus? She completely, 100% agrees with us not vaccinating. In fact, she herself said that she recommends not doing it in families that have had histories of vaccine reactions (what I'd call injury, but yea.) She is at a clinic across town, but will be moving to our family practice clinic nearby in September. So, once September comes around, all three of my kids will see her as their Dr. I can't tell you what a weight is lifted. I don't have to be afraid of allopathic medicine if it's needed. Someone is there as a resource, knowing that's exactly what she's needed for.

Riley is doing AMAZING right now. After a few very tough weeks, we decided to be very diligent with his Enhansa and also increased the dose. Big improvements.

Yesterday, Oliver (baby brother) was crying. This is usually a big stress on Riley. He usually cries and screams and runs out of the room. This time was different, though. He went into the other room and got Oliver a stuffed animal and set it by him. As if to try to make him feel better. Then, after dinner, when eating baked cinnamon and honey apples ("apple pie") he said, "I love apple pie." Completely in context.

Later last night, at a time when he is usually stimming and driving us nuts, he wasn't. He was mellow. He went into the toy closet, got out a plastic tote with magnetic car building set, and started playing with it. All on his own. He sat and played with it for at least 10 minutes. Neither my husband or myself directed this activity. He did it all on his own.

Today, when getting off the bus from "school" he knew immediately that Tara, our respite provider, was here. He got off the bus and started running toward the house. He was so excited. He came in the door and started taking his snow clothes off, all the while saying he was going to go look for Tara and play with her.

And finally, the other day he made his first drawing on his own. He drew a turtle, with a shell and a head, with a green marker. He then told myself and our respite provider that's what it was. It came out of no where. We didn't even ask him what he was drawing.

Just amazing stuff. I have to remember these times when it's really hard.

"Having one child with autism is like having six children." - Pam Ferro, RN

We had a new son, Oliver Hayes, on November 10. He was born at home. No interference, no strange people, no poking and proding, no drugs, on his own terms. Just as it should be. Healthy 8 lb 7 oz.

The fears set in, just as I knew they would. This may very well be the most overprotected baby known to man. He is never far from the breast, due to a theory I have that being with the mom always, nursing always, and not having to do much else, is very important for both the gut and the brain. He's been 100% breastfeed, at nearly 7 weeks, which is longer than I was able to with my other two sons. Though they each nursed almost two years, I supplemented both of them. This time, my milk supply caught up to his needs when I allowed myself to surrender to him and what he needed. My husband has been very supportive of it all, and has listened to my 'crazy' rants about him getting sick and protecting him from mainstream medicine. For this reason, he's only been seen by my midwife. Hasn't been a reason (yet, and hopefully not for a long while) to take him to the Dr.

As a family, the adjustment has of course been an adjustment in all ways. You expect your kids to react to a new baby, and they did. Riley, though, has had a hard time. It has only been within the last two weeks that he'd even be in the same room as Oliver. I believe Oliver is the ultimate example of unpredictability, which is probably why he makes Riley so nervous. If he's crying, Riley will run out of the room. Often, it's into the bathroom, where he turns on the fan and shuts the door. I am happy that most of the time this is how he reacts, and also says "I don't like it." He makes it known what his feelings are. It's been very hard, especially for me when I'm alone with all three. Of course the logisitics of getting everyone's needs met is hard. But because Riley is so far behind in many areas, he lacks the independence one usually has at 51 months of age. He still needs so much help and so much supervision. So, the easiest part of my day is in the morning. Riley is at school, Oliver naps, and Jack (my 2.5 year old) is usually busying himself playing. If I didn't have that time, I probably would have broken by now.

It has been an emotional time. Not swinging one way or the other between "good" or "bad" emotion... just emotion. My husband and I talk at least once a day about autism. I wish it weren't the case but it often comes out of our mouths. I talk and vent a lot about wishing things could have been different. We watch Jack a lot and I get very sad that we missed out on so much with Riley- and didn't know it until we had a typical child. Jack now spontaneously climbs into my lap and says "Mom, I love you."

Christmas, holidays, special events are so hard for us. I wish I could say that they aren't, but they just are. Christmas shopping in particular was sad, walking up and down the isles and realizing it didn't matter what we bought-- Riley won't "play" with any of it anyway. It is starting to get better as Jack gets older, and no doubt will continue to as Oliver gets older and Riley has two examples to learn from. Right now it's still raw. It's still a feeling of loss in many ways. I sometimes wish that on holidays and such other people would realize just what we go through in terms of emotions. A special occasion comes with expectations- things you wanted to do with your children on Christmas, their birthdays, whatever. It's a constant disappointment.

Right now, all three of my kids are napping and I am just me. Often, that's when the bulk of it comes out, and it tends to come out all at once. I sometimes have an intense emotional release in the evenings, during nap time, when it's "safe."

In terms of treatment, we are very close to Riley's number coming up on the therapy waiting list. Riley has some sort of pica... has been biting, chewing, and picking at everything from books to drywall, to the corners of the walls. He also has yeast right now we've had a hard time controlling. We hope to see our DAN Dr in the new year. It's always had it's share of ups and downs- treatment I mean. We seem to be in a bit of a down time right now. When his body is in a state of regression or even just maintenence, it's hard to keep hope that things will change. I'm trying to remember how far he's come, and take each day as it comes!

I haven't updated in a month and a half, and we are just about to welcome a new baby. So, I'm going to update, even if I don't have terribly organized thoughts.

We just recently came out of a horrendous gluten infraction. Very long story short, the regression was scary. It was a nightmare. He was so constipated he was crying in pain. We did eventually get it all worked out, and then a little yeast remained. We seem to have gotten things back to 'normal' again, finally. This was over three weeks ago. I ended up having to file more paperwork with school and had a meeting with his teachers about making sure we were careful about exposure. I do not want to ever ever ever repeat that. It was awful.

With that experience also came a realization and some serious reading about constipation. We have noticed that when Riley is constipated, even for a day of no BM, his behavior is odd, off, or completely unbearable. I know this is because toxins and waste are being reabsorbed into his body. So, we are making an effort to cut out a lot of carbohydrates and promoting daily bowel movements (Vit C, lots of fluids, and miralax when needed) I think that potty training has also played a part in it, because he's not poop trained at all. I think he retains because he doesn't want to poop in his underwear.

Socially he is doing really well. That's one thing I can thank school for, I think. He's interacting with other kids in his own little way, and he talks about the other kids at home.

We have had a little extra respite because of having the new baby soon. We hired my friend, who did therapy with him last spring. When she came she noted changes, positive changes, since she'd last seen him. I got to thinking about all of the changes that have happened in the last six months, and it is really remarkable.

We're having ups and downs like any other time, and are anticipating some issues when the baby is born. When you look at the big picture, though, we're on the right track.

Birthday wishes

Today was Riley's birthday party... four years old! Above is the gluten, casein, soy and corn free "ice cream" cake I made for him. He blew out the candles. I got the idea from a friend, and it turned out really great. Riley really enjoyed his "party," and understood what was going on around him. With prompting, he said "Thank you" for gifts and he did really well with opening them, too.

This has been such a HUGE past few weeks for him. He has done so much healing, and so much is suddenly connecting in his little brain. I am always in awe when he goes through spurts like this. I never want them to end. I'd say I wish I could freeze this time, but I know we're only going to go up from here. His body is really showing us a lot about what our bodies are capable of healing from.

He is saying things daily that are amazing me. I often yell to my husband "Did you hear that?!" and there was a night we had dinner with my parents that Riley blatently said, "I don't like that," and we all took note.

Concepts he's been understanding: Numbers, specifically one and two; First we ______, then we ______. He really likes knowing what's next. Cleaning up one thing before we get out another. Getting ready for school, and the steps we take to do that. Sharing toys, taking turns. This is just emerging.

And POTTY! He's had days where his underwear have been completely dry. Not too bad for starting hardcore habit training just three weeks ago. He is staying dry through some naps, too. He does have his fair share of wetting through undies and pants, but overall is doing very, very well with it. Poop is of course another story, as is true with lots of kids on the spectrum. One thing we've noticed though is that he will wait until he has a pull-up on at nap time, or a diaper on at bedtime before he does it. He seems to hold them until then. This is a good sign, to me, that he has bowel continence. It's just a matter of getting him comfortable with going on the potty. That may be a while, and that's okay.

And, the story that just warms my heart. Riley picked flowers (weeds.) on the walk from school to our van, insisting that he "give them to Tara" (our babysitter/respite provider) He held them the entire ride home. When we got home, he ran to find her, opened her hand, put them in it and said "These flowers for Tara." She looked as though she was as amazed as I was. This was a huge thing for Riley, socially in thinking of someone else and giving her the flowers. Also it was huge that he made the gesture of opening her hand and giving them to her. Just huge. When I told my husband this story, he was in disbelief.

I'm just going to close my eyes and thank God for all of this. And thank God we'll be starting intensive in home therapy very soon. This child can recover. My child can recover.

Just a follow up to my last post. After talking with my husband last night (which has been rare here lately due to heavy work schedules) I realized he had been giving Riley a dose and a half of Enhansa for the last several weeks. After spending much of that time saying "Something is so different. He must have worked something out." I am happy to know it's likely the case. Guess that's a nice way to sneak in a "is this really working?" test. Thanks, husband.