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.

Big changes

Riley started "school" this week. It has had some bumps along the way (the bus, mostly, and we're avoiding that and just driving him for the time being) He seems to really enjoy it, and was excited to go this morning. When I picked him up this morning I saw the song they sing to close the day, and he was engaged and smiling. While it's not typical preschool, I am feeling okay about it for the time being. We tried to get Riley enrolled in a nearby Montessori preschool that is very affordable. Because of their licensing regulations, they can't take kids that aren't potty trained. This was really frustrating for us, because we have been trying for a long time. We're working a lot harder on it now that we know that's all that is standing in the way of a typical preschool setting.

Aside from this huge change, Riley has shown tremendous changes in understanding concepts and language. The past few weeks his behavior has been challenging (a lot more tantrums than usual) but he has shown so many gains, I'm assuming that's why. He has been doing really well with "I" and "my" and has been saying things like "It's time for..." and "I don't like that/I don't want to..." I have had those moments again where I just sit back and wonder what has changed. I know that Enhansa is still hands-down the BEST supplement we've tried to date, and I do feel that's had a lot to do with it. But I think part of it is that his brain is working really hard at playing catch up. In a lot of ways when I think of Riley I think of a lot of his social, communication, cognitive skills to be more of those like a three year old versus a child that turns four in 11 days. I think it is really going to be to his advantage that he gets an "extra" year before kindergarten.

Long overdue update.

It's been a good while since I've updated. I think the reason behind that is that my brain is so frazzled I'm afraid my posts won't come out right.

It has been a really hard last week around here. It came out of nowhere... a reaction to "natural flavors" in popsicles he hadn't had before and had too much of while I was tied up with work for two days. It's a mistake anyone could make, but of course it's taken a good while for him to work it out of his body. His tantrums/meltdowns this week have been heartbreaking and frustrating at the same time. I have been so exhausted from this as well as a mixture of other things, and my patience is at zero. It's hard when he's been on a roll for a while where we think we're getting somewhere, and then some sort of regression takes place.

Enhansa (Lee Silsby's enhansed curcumin/turmeric) has been really helpful for Riley. Aside from S. boullardi, it is the only thing that has controlled his yeast to date. This has worked far better than that, even. I have seen social improvements as well as some communication improvements (one in the same, really?) He is doing really well with other kids now, and I am enjoying watching he and his 2 year old brother interact.

I also feel at this point that intensive therapy is a key piece in going full steam ahead with recovery, or at least being as recovered as possible. On that subject our state did pass the insurance mandate. So, intensive therapy will now be covered by insurance. It's not clear yet how any of it will be implemented. Riley also finally entered the state's Medicaid waiver waiting list at #210 on June 30. We received a Medicaid card in the mail to use for other services but haven't had a chance to look into what those services will be. I'd assume speech, OT, medical bills not covered, etc. Soon all of these things will be covered and I'm not sure where that will leave us. It may happen that Riley comes up on the waiting list sooner than the insurance mandate is set in place (November, most likely) It's sort of annoying that no one can tell me what's going to happen, but I'm grateful to know that he will likely begin full time in home therapy this winter sometime. Because we are having a new baby in November and a parent needs to be home for this therapy, I'd say it's pretty good timing anyway.

When we got the letter stating he had been added to the waiting list, we also got information about "Families Can't Wait" which is a grant program for those waiting for services. We were approved this last week for a grant toward respite care. Since this is something that we scrounge to afford in our budget, it is a big relief to have some of it paid for. I couldn't survive parenthood without our babysitter.

Riley is also starting the "Early Learning Session" program when public school starts. It is 2.5 hrs, 4 days per week. It is essentially a preschool program done by an early childhood teacher. Half kids with IEPs, half typical kids. Speech and OT mixed in. I am nervous about it. Riley has always been home with me, with the rare exception that when he was a year old we had a short stint of him going to a babysitter while I had a long term postpartum client. Other than that, he's been home with me, or with a family member, or our sitter. I am sure parents of typical kids have the thought when their "baby" goes to preschool that they can't stand not knowing what their kid is doing and how they are being treated. I'm most nervous about him getting lost in the shuffle because he is higher functioning and appears typical at first glance. He will be a very young four (birthday September 14) when he starts this program. I am so glad that we have two full years before kindergarten. He so needs these two years. I really need this break, so I'm hoping it is a good thing. If he does well with this, I'd like to start preschool next year-- Montessori.

For the summer I have been taking my boys to a somewhat structured playgroup. It is a free service at the Family Enhancement Center (county program) It's two mornings a week, drop in, parents stay with the kids. My kids do really like it, and Riley has learned to peddle a tricycle thanks in part to the nice bike track they have outside. The downside is that often times it is a blow to see neurotypical kids and how far behind in certain areas Riley really is. I am also easily annoyed with other parents and it puts so much in perspective. I listen to the conversations sometimes and the overparenting going on and think... if they only knew what I would give to be living their life. The positive aspects to this program are endless, though. My younger NT child gets to interact with other kids, Riley is seeing some great peer modeling, and it gets us out of the house. Sometimes that can mean everything, even if it's stressful on me. Riley in particular gets restless at home. But it's the nature of being a small child. You get bored.

I have not been the most positive person to be around as of late, but I do see positive things happening. I don't feel as hopeless these days, I do feel like we're heading in the right direction. Day to day things have been stressful and along with that has been the extra stress of pregnancy and being so, so scared for this baby. We're just doing our best right now. I wish I could take more time to blog the good things!!

We are expecting our third boy. I could write a novel about what feelings this brings and the discussions DH and I have had, but I'm certain those of you who read would understand. Up until now, most of these feelings have been buried. I think it is good to have them come to the surface so that we may process some of them.

Please hold our family and of course our little boy in your hearts with thoughts and prayer. We will do all we can to give him the best start possible.