Allow Me To Wax Philosophical For A Moment

Well, maybe not philosophical, maybe I mean sentimental. Ben was diagnosed a year ago this week. I first heard the words "I think your son has Autism Spectrum Disorder" from a psychologist here in Chapel Hill. That diagnosis was seconded by a team of therapists and psychologists employed by the state of North Carolina through the Child Development Services Agency. Since that time, Ben has had a year of Speech and Occupational Therapy (but he still doesn't talk!) a couple months of Play Therapy, 7 months of a self-contained special education preschool environment, blood tests, vitamins poured down his throat, creams, and now he gets B12 shots every three days and is on a gluten and casein free diet. My son is still autistic and probably always will be. I think he's a moderate case of autism, I hope one day he will be high functioning. I don't know if he'll ever be able to drive a car. I don't know if he'll always be in special education, or whether he'll be able to be in a regular class one day. I don't know if he'll be able to have a job. I don't know if he will ever be able to take care of himself. I don't know if he'll be able to get married or have a family. I used to cry a lot when I first found out Ben had autism. I couldn't tell anyone about it without crying. I was embarassed because I thought I should be able to talk about it without being emotional and when you cry in front of people, it makes them feel bad. I don't want people to feel sorry for him or us. Life doesn't play favorites. Nobody's life is perfect, and there are no guarantees. Ben is one of the happiest individuals I know and he's extremely loving. He gives hugs like nobody's business. He smiles his little dimpled smile at me all the time. He can't talk, he can't imitate, and there are a lot of things he doesn't understand, but love isn't one of them.

The Enzymes Have Started . . .

Well, Ben is improving, Rob and I both think so. But who knows why. He's been much quieter, though of course he stills yells sometimes. I've become a recent convert to the enzyme camp, and have started giving them to him at all meals and snacks. Dr. Hines told me to give him the enzymes, but I haven't really done it regularly until now, when recent information I've read has convinced me of their importance. I think its especially important since I don't know if I'll easily be able to remove rice and soy from Ben's diet, and the blood tests clearly show a sensitivity to them. Today I made him some gluten free playdough, and when I asked him if he wanted to play with it, he came right down off the windowsill and went over to his table to play. He does seem to be listening better and his teachers say that he's had nothing but good days this week, and is transitioning well between activities. His favorite new activity is spinning things, absolutely everything. I'd also mention just for the record that he's letting me read at least three bedtime stories to him at night without trying to get another book instead of the one I'm reading (his usual trick), and without trying to escape. Hopefully I'll be reporting more improvements soon.

Raindrops Keep Falling on My Head!

Ben has this dog that Mom and Dad got him for Christmas (yes, thank you mom) that sings "Raindrops Keep Falling ON my Head" when you press it's paw. Well, Ben recently rediscovered it and now plays the dog at least 100 times a day. I don't know if its the song he likes or the fact that the dog moves around and sings it. Either way its starting to drive me crazy. But I guess its harmless enough. He had another good day at school today and I finally got his last test sent off the the lab so now I'm officially done with all that. I'm concerned about the arsenic and aluminum they found in his hair test in high amounts. Ben's teacher pointed out to me that the playground equipment at his school is made of wood- it's old so most likely it was arsenic treated wood. So now I have to figure out if this arsenic wood thing is a fight I want to pick with the school system or not. He does chew a lot of wood here at home, so I'm sure some of it could be that too. And I don't know how much arsenic he has to have before it becomes dangerous, though I'm sure any amount doesn't help things. I'll be making another appointment in August with Dr. Hines in Winston, so I intend to consult her on these matters, though personally, I think she'll come out on the extreme end of things. She told me not to give Ben any more vaccinations indefinitely, which I'm still researching and mulling over. On the bright side, Ben seems to be doing well, even if no major changes have happened. He's happy and so are the rest of us. Katherine and Caroline have been playing together like angels for the past couple of days.

Help! Ben is Allegic to Everything!!!!

Okay, not really everything, but a lot of things. He had some blood taken a couple of weeks ago and the results of the allergy test came back today. He definitely is allergic to Cow's milk, and Gluten, as well as soy, sesame, rice, corn, egg whites, watermelon, tomatos, wheat, oats, barley, almonds and peanuts. Great. Now what do I feed him? I was doing okay on the gluten casein free diet, now that he's allergic to soy, corn and rice, I have to figure out ways to get those out of his diet too. He drinks soy milk, eats corn and rice pasta, and rice bread. But on the bright side, he's not allergic to potatoes or meat, so I guess that will be his main dinner from now on. We took him to a chinese restaurant with the girls today for lunch and he was as good as gold. Very quiet, ate his bannana and rice and potato chips very well, and didn't cry when I went up to the buffet like he usually does. Rob and I both noticed his terrific behavior. More progress to come I hope . I'll try to update this blog more regularly.

It's Monday again!!!

And I love Mondays. Really. I do. Ben went back to school today and about 10am I got a call from his speech therapist over the summer. Ben bit her. My son is a biter. I actually knew he was a biter, or at least could be, but he's not bitten me in a good long time so I kind of thought he knew better by now. Apparently not. I apologized profusely for his vampiric tendencies- he actually drew blood through her pants - but the school system seemed more worried about whether I wanted the therapist to be tested for any diseases so that I would know whether Ben had been exposed to anything, though it was unlikely he touched any blood through her pants. And here I was, preparing to write this blog about how he did a tupperware shape sorter, and beaded a bead snake yesterday without fussing, wearing his new vest. I really don't know if this diet and the supplements are helping a whole lot, but we'll keep trying for now. I took a test the other day called the ATEC, put out by the Autism Research Institute. Ben's score was 102, meaning yep, he's autistic. A normal child would have a very low score. I'm going to take the same test a couple of months from now and see how much has changed due to these interventions we're taking, at least that way I have some way to measure progress other than my subjective observations. Ben has turned on Taiwanese TV in the background now. I guess I'd better go. I'll write again soon, and I'm about 3/4 of the way through the new Harry Potter book, if anybody cares. :-)

Still Going, like the Energizer Bunny . . .

We took Ben and the girls 0ut t0 lunch t0day at Jas0ns Deli. It w0uld have been a great event except Ben g0t jeal0us 0f 0ur f00d and R0b had t0 take him 0ut 0f the st0re. It was kind 0f sad t0 see him deparately reaching f0r a cr0issant, when all he had t0 eat was s0me tapi0ca bread with jam 0n it, applesauce, and a cereal bar that he just didn't care f0r. The gluten thing hasn't been s0 hard, except f0r ,m0ments like this, when he feels deprived. He d0esn't kn0w why we're d0ing this. He seems t0 be a little quieter, th0ugh he still spends a l0t 0f time flapping at his r0b0t and chewing 0n w00d ar0und the h0use. I w0rked with him three times 0n Wednesday, and there is n0 questi0n that that's a l0t m0re than he usually lets me d0. Still, there's been n0 speech pr0gress, but we've 0nly been 0n the diet a week. Patience is n0t 0ne 0f my virtues, sad t0 say. I want results!!! I guess I d0n't have ch0ice but t0 wait and see if it all helps in the l0ng run.

Gluten Free At Last

Ben has been gluten free since, Sunday, or at least, as far as I know he has. There's gluten everywhere and he's very good at finding days old pieces of food in hidden places. But boy, I've done my best to make the kid gluten and casein free. No miracles have happened yet. He did do two puzzles and a shape sorter for me this afternoon, because I used the greatest of all his motivators. . . food! He's developed a fondness for potato chips (yes, they have no gluten) and these little natural corn puffs I found at the health food store. At least he has a couple of other snacks to eat besides fruit. We started giving him a shot of B-12 every third day and the glutathione cream twice a day. I'm finding it kind of difficult to remember to do everything every day. Supposedly, it takes 2-4 weeks before we'll see any kind of result with the B-12. I'm going to continue the gluten/casein free diet for at least a couple of months, it's really not as hard as I thought it would be, as long as you live near a health food store, and we've got two here in Chapel Hill. I also ordered him a weighted vest from Ebay, in the hopes that it will calm him down and make him more able to work with me and his speech therapist. Right now, he fights it so hard. He's got a real stubborn streak. I can't imagine where he gets it from! ;-) He seems to like summer school, and has adjusted pretty well. He's still VERY hyperactive. We played in the sprinkler and the pool today and that helped pass the day away. I can't wait until school really starts. Six more weeks!

London Telephone Booth

Here's what's happened

Yes, Rob and I were in London four days ago riding the Subway around town. We stopped at some of the very same stations that were bombed. This is so surreal. . . I feel so bad for all the Londoners and so lucky that we came back when we did. It's been quite a week. Ben swallowed a bronze lamp switch (at least that's what we think it was) and right now we're waiting for it to come out. I'm lucky he didn't choke on it. I have to take him and Caroline to the doctor today,him for a blood draw for all those pesky lab tests, and Caroline because Katherine stuck a stick up her nose while they were watching (innocently, I thought) Sesame Street, and now they both say something is stuck up her nose but I can't see anything. The doctor's going to check it out anyway. I was pretty mad. As I said, this has been quite a week.