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.

Let Them Be What They Are

I had an interesting conversation yesterday while at Katherine's Bible School concert and it stuck with me. I was watching the concert with Caroline sitting beside me and I was trying to manage Ben, who would only be still when he had a lollypop (I gave him 3 over the course of the event). Ben was just being himself, examining everything, running around, laying down on the bench and the floor and in general perfectly normal for him. I admit, I was embarassed, because I know most people don't know he has autism, they simply would think I have no control over my own child. A man and his wife had a little red haired baby and they sat next to me during this whole ordeal, clapping for their own children as they got up to sing. As the concert ended, I ended up following them with K, B and C over to the reception area and I tapped him on his shoulder and thanked him for being so understanding about Ben's distractions. He smiled and said in a thick accent, "I have six children of my own and I know that sometimes you just have let them be who they are. " So my mission is to support Ben in being who he is. He's not a cookie cutter kid, as he gets older it is becoming very obvious that he is not a "typical" three and half year old. He may never be a "typical" person, but then again, who wants to be just typical?

Looking Forward to Our Trip

Thanks goodness for the Wiggles. I think Ben will be glad to start school again on July 5th, as I'm sure he's getting bored. I know I am. I've still got to clean the house and he's developed an affection for our potted plants and of course, the ever popular throwing hard objects down on the wood floor to hear the cool sound they make. I have a lot of books on my reading list, some about educating autistic children, but I'm finding it hard to make the time to do any significant work with Ben. I'm so glad he's still getting therapy and will be in school again soon, I think it's definitely the best thing for all of us. I am going to take him to a Bible school concert tonight that Katherine is going to be in and I'm not looking forward to it. Rob has to work late and can't be there, and Ben's hard to control in public places. I intend to bring a lot of lollypops. The kid's going to have no teeth by the time he's ten.

And We're Off to A Rocky Start. . .

I wish I could say that the last couple of days were terrific for Ben but they haven't been. He's been okay out in public but at home he's been driving me crazy. He's stimming a lot, and now that he isn't as interested in books, he's got nothing to do but get in trouble if I'm not personally engaging him in some activity, which let's face it, doesn't happen as often as it should. I don't want this to be a complaining blog, but I must rant a bit. He spins the stools in our kitchen all the time. He has started chewing wood again, and when he's not gnawing on our coffee table, the windowsills, the bannister, the dining room table, he is scraping his fingernails in it. He climbs on me all the time and squeezes my arms. He has gotten fussier when it comes to eating. He used to love goldfish, cheerios, and wheat thins, now he just crumbles them up and spreads the crumbs all over the floor and then wants more to do the same thing again and has a tantrum if I don't do it. I get so tired of telling him NO all the time that I'll admit there are sometimes I just give up. Playing outside didn't go so well today, as neither the girls or Ben wanted to stay out there. Finally, I just came in and in order to quell a tantrum, I just put on the Wiggles for him. I'm just so worn out and I don't know why. Maybe my next post will be better.

We Had a Good Weekend

Ben had an awesome day yesterday! He was as good as gold at the festival we went to and definitely deserved the "baby of the day" award. He beat Katherine and Caroline hands down for good behavior. I don't know if it's the oils or not, but he's been making awesome eye contact too. Today at the mall, while we were eating our lunch, everytime I looked at him he was looking back at me smiling. He's always happy when he's eating. Rob worries that he's going to get fat. Ben didn't say much today as usual, but I though I caught the word juice this morning and he definitely said cookie at dinner, while eating one. His rash is totally gone now, and for the most part, his bowels are normal . . for him, anyway. I think it may have been caused by the NDF Plus, I'll give it to him again when we get back from Europe. He gobbled down his gluten free rice pasta at dinner tonight, at least that's one more thing I can give him when he goes on "THE DIET" .

Testing . . .

I shipped out the first test of Ben's today to the lab. I have a whole bunch of tests sitting in our living room, some blood, one urine, one fecal (yeah, I know, gross) and I have to collect the samples one by one and send them off for analysis. I gave Ben his first enzyme tablets today at breakfast and he took them readily. I guess they must taste pretty good. One is supposed to help with digesting the casein/gluten proteins and the other is supposed to help digest starches. No big changes in Ben in the past couple of days, but he's been pretty happy except for a tantrum last night at bedtime. He had started sort of singing Chugga chugga big red car, which is the song from the Wiggles that Ben loves. So I thought I'd encourage him and I started singing it too. But he got angry and threw a fit because he then thought that I would put on the Wiggles video for him, but it was time for bed. I stopped giving him the NDF celation drops because he had a wicked rash on his bottom the day before yesterday, and I didn't know why. It was on the back of his legs too, so I thought it must be an allergy to something. I still gave him the primrose oil yesterday, but did not do the drops or the cod oil. His rash is better, so I'll reintroduce the cod oil today and tomorrow and then try the NDF again in a few days. His poor little body is sure receiving an onslaught of new things.

Ben's Life First Post

Hi, I've decided to keep this blog for myself, as well as for my family and friends who are interested in how Ben is progressing. I just finished giving him his Super Nu Thera and his Evening Primrose Oil. Last night (day two of giving him the Primrose and Cod Liver Oil) Rob was surprised to find Ben actually obeyed his instructions to put a basketball in the hoop at our neighbor's house. The first time Rob asked him. Usually he seems to have no idea what we're talking about so I'll take this as a hopeful sign. His eye contact did seem to be better too. We went to see Dr. Hines in Winston Salem on Saturday and she gave us a whole bunch of things to start. In addition to the Oils, which are fatty acids to help brain function and hopefully stimulate speech, we are going to give him enzymes at meals, and we started chelation with a mild product called NDF Plus. Of course, we are also going to start him on the gluten free, casein free diet, but not until we get back from our trip in early July. The doctor agreed with the chelation part even though he hasn't been tested for mercury levels yet, because the chelator is a non drug one that anyone can take. We believe that mercury may very well be one of Ben's issues. I have over eight metal fillings in my mouth (8 is the point where they start to worry) and I most likely swallowed one while I was pregnant with Ben and Caroline. Silver fillings give off a mercury vapor. It's possible that Ben's vaccines contained thermerisol, a preservative that contains mercury, especially since the military stockpiles vaccines and who knows how old Ben's were. I also ate a lot of tuna while pregnant, probably twice a week. All these could have increased Ben's levels so both Rob and I think chelation might benefit Ben. Of course Ben is going to be allergy tested, mercury tested, metal tested, etc, etc. And he'll be getting B-12 shots every three days. Poor little guy. I don't know if all this will work, but I feel that as a parent, I have to at least try them.