Post Christmas Reorganization

Hello everyone, we're doing okay today. Ben is spinning things in the other room and the girls are playing (mysteriously) upstairs. I've run out of enzymes for Ben and guess what? He's started chewing wood again, along with everything else, like plastic dinosaurs or Ken's hands and feet, much to the girls dismay. Enzymes aren't cheap, and I was trying to see if I could wean him off of them, but I guess I got my answer when the chewing started again. So I ordered more. I can't wait for school to start back, though it has been nice not having to drive someone to or from school all the time. Sometimes it seems I'm in the car all day long. Ben enjoyed his Christmas, and he did much better at Kathy's than I expected him to. He seemed content and didn't try to leave the house by pulling us to the door. He's doing even better at pointing and I've been practicing it with him every day. He's really enjoyed his sand and water table, but I put it out on the deck so it will be an outside thing. I'll have to get some birdseed to put in it because he throws the rice that I put in the water side all over the place. This morning he got a hold of a bottle of nail polish that one of the girls got in their stocking and got it all over the wood floor. Luckily, it does scrape up, but it's just tedious work to do. Sometimes its just one thing after another. But Happy New Year everyone, I hope it's a great one!

Look What Ben Did!

But I Don't Know How He Found the Food Dye . . .

Ben is purple. Really. I bought some neon colored food colorings the other day at Harris Teeter and Ben found it. The purple one anyway. I gave him a good bath and he looks a little better than he does in this picture, but he's still stained purple, and seems to be oblivious to it. I hope he's back to normal by Christmas, or there will be some pretty interesting pictures out of it. Rob and I tried to make light of it, because he actually did look quite funny, but in the back of my mind I know had it been something more dangerous than food coloring we could have been in real trouble. I don't know how he got to it. I had it up on the shelf. The only thing I can think is that I must of left that purple bottle somewhere where he found it. But he's getting so tall, he can reach a lot of things he couldn't reach before. He's helped himself to the Christmas cookies on the counter more than once!

Thankful for 2005

I find that, just like Oprah has always said, gratitiude is the way to happiness. I'm trying to instill this in the girls, but it's a hard concept for a child to comprehend. Appreciating what you have just doesn't seem to be as much fun as getting more stuff to them. But as I've gotten older, I realize just how important it is to take stock of what you have, and to be thankful that you have it. So here it goes, my list of thankfulness for 2005. First of all, I'm thankful for my family, both immediate and extended. My children are wonderful, and I couldn't ask for a better husband. He is awesome (as my mother in law recently pointed out!). Katherine is so smart and sweet, Caroline is also smart, passionate and friendly, and Ben, despite his disabilities, is a bright and loving little boy. I am so thankful we traveled to Europe this year, that I finally got to see London and Paris, and I think about them often. We couldn't have made the trip without the help of our family! I am also very thankful for the ARC, who provided us with Hannah and Julia, our respite care workers, towards the end of this year. It is so nice to have some needed help. All in all, I have a wonderful life. I resolve to try to be a more patient person this year, which isn't one of my strong points. I will try to be more mindful of details and to remember, children are delicate! I tend to rush around and not enjoy the process of being a mom and that simply has got to stop. Being a mom is my most important job and I intend to do it well and mindfully, as well as appreciatively. Here's to gratitude!

Encouraging progress. . .

Well, Ben made a little improvement last night while I was reading to him before Ben. I usually ask him to point to things in the book as I'm reading, mostly to get him to actually look at the book while I read instead of looking around the room. I used to have to do hand over hand with him and literally MAKE him point, as he would not do it on his own. Lately, he's been responding to what I ask him to point to by putting his whole hand on the picture, not always the right picture, but at least he's doing something when I ask him to point. Last night I put his finger in a pointing position and helped him point and then in between questions, I noticed he was holding his hand in an L shape with his forefinger and thumb stuck out. The next time I asked him to point to something, he used his forefinger! I think he was really trying to figure out pointing but just couldn't make his hands do it on their own. Motor planning is still a hurdle for him, but I'm pleased with his progress!

Seems Like Rob's Been Gone Forever . . .

it really does. But I've been getting along okay. Katherine is sleeping with me while Rob and Caroline are in NYC, and of course she's been getting more attention than Ben has. What's that saying about the sqeaky wheel getting the oil? We'll Ben's not much of a squeaky wheel. I did manage to take the two of them to the mall on Saturday. WOW! Parking was such a hassle. I hate the mall at Christmastime. Do I sound like Scrooge? However, part of the draw was that the Southpoint mall has a cool playground indoors by the food court and we spendt a nice little time playing there. It is a perfect playground for Ben, and despite all the commotion and loud noises and crowds, he loves it. It's rare to find a playground that Ben can play in without finding something to stim on. There are a few "stim" objects that he visits for a minute or two, but for the most part, on that particular playground, he plays just like a regular boy his age. He climbs, slides, goes through tunnels, jumps, all the regular kid things. I love going to that playground if for nothing else that for a brief few minutes, it's hard to tell Ben is different than any other little boy. Katherine misses Caroline a lot, she's not used to having to entertain herself with a playmate. We can't wait to have Rob and Caroline back for good!

Santa Claus Is Coming To Town

Here's a recent dilemma: What does Santa Claus bring Ben? The girls are easy, they are very typical for their age and very vocal about what floats their boat, so to speak. I'm really trying my best not to overdo it this Christmas, but still make it nice for them. Ben is not so easy. In the past, I've given him learning toys, like shape sorters and peg boards, so that he can use them with me assisting him. Last year I made the mistake having Santa bring a train set (Geotrax), a basic one I thought he'd at least have a little interest in. WRONG! He could have cared less about the thing. At least in the past I couldn't go wrong with board books, but now all he likes is spinning things. So, what does Santa bring? Tops? He's actually got enough of those. Grandma and Grandpy gave him one for his birthday that he really likes. Now Ben could actually care less about Christmas or Santa. He doesn't get any of the anticipation the girls have. But for the girls sake and for his, Santa has to come up with something nice for Ben too. So I was pretty proud of myself when I came up with the idea for a sand and water table for our deck. They're not easy to find this time of year because they're seasonal, but I scrounged a pretty nice one up at Toys R Us. Ben absolutely LOVES sensory play and I figure we can use it for most of the year. I'll put birdseed in it instead of water until the winter is over, and there's no chance of freezing. That way there's no clean up. Yay! In my attempt to try to get Ben to play like a normal boy, I bought him a little remote control Wiggles Car. I don't know if he'll get it or not, but it's worth a try. Ben is also getting a Gearation toy, which is a toy with spinning gears, I hope it will be right up his alley. And Lucky Ducks, a rotating duck game for 3 to 6 year olds. I don't know if he'll understand that yet, but he eventually will and the girls will have fun trying to play it with him. So that's what I've come up with. We'll see how it goes. I'm almost done with all my Christmas shopping! Yay!

Just Being Him I guess

Rob's gone to a conference in Florida this week and so far, I'm staying reasonably sane. The girls and I even made Christmas cookies this afternoon and then decorated them after dinner. In the bathtub tonight Katherine asked me why I always play with Ben in the bath but I don't play with her. This made me sad. It's just another example of the kinds of things that go through the girls' head regarding Ben and his disabilities. The best reason I could give her is that Ben does nothing with anybody else unless someone tries to get his attention. I told her that since she and Caroline play with each other, they don't need me as much. I know they do need me in a different way that Ben does, and very often I feel they're not getting the "me" that I want them to have. On a happier note, Ben's teacher said today that he's just about mastered all the teaching tasks that they have in his classroom and she's going to have to come up with something more complex for him. That's good news. He's very quick when he knows what to do. I guess that's all for now because I'm exhausted. 'Bye.

More News From the Front

Well, Ben said something recognizable last night, but considering he's done so many times before without anything really coming of it, I try not to get my hopes or expectations up. Some bananas were on the counter out of reach and he walked over to them, got my attention and then reached for them saying "Elp, elp, elp, elp" several times. I just knew he was saying "Help me get a banana Mom! " I was pretty cool hearing him talk and understanding what he wanted. I just hope he does it again, but I'm not counting on it. It's hard not to get discouraged. I can look at my journal entries from almost a year ago and he was saying more then than he does now. It's frustrating but part of the beast that is autism, I guess. I keep saying he's progressed in other ways and he has, but speech is not a strong point for him.

A Few Bad Days Can Change Our World

A few bad days is what Ben has had. He's been very volatile and quick to throw tantrums. The yelling increased, and he was difficult to take out yesterday. Surprisingly, this kind of behavior has now become uncharacteristic of Ben. However, it has lead us to conclude that yes, indeed, these changes ARE related to the fact that we've been feeding him "regular" food and not gluten free/casein free food. Hard to believe that diet can be such an influence but it obviously is. I'm sad for Ben, but maybe he'll become more tolerant of regular food as he gets older. I can only hope. All this thinking about food has led Rob and I to a conclusion that we've only toyed with before. We need to find out if altering Ben's diet even further will help him even more. The Specific Carborhydrate Diet (SCD) is basically free of all preservatives, and artifical colors or flavors. There really is no pre-prepared food that Ben will be able to eat on it. No conveince foods, just a lot of cooking for me. It's really strict. I'm planning on starting it the day after Christmas. I will do it earnestly for one month and if we see a lot of improvement we'll keep going. If not, it's just back to the GFCF diet. Right now I have a 4 year old boy with at least moderate autism with not functional words at all. I don't want him to be severely handicapped for the rest of his life. So I have to try all my options, and concerning diet, this SCD diet is my last one. And that's how I feel about it. 'Bye.

The Classic Halloween 2005 Picture

Update At Last!!!!

Hello Everybody, thanks for being patient with me. I finally got my laptop back from the repair shop and my O key is fixed at last. I plan to be updating my blog multiple times weekly, as I think it really helps me think through my feelings about Ben and my situation in general. As for Ben, the IEP meeting went okay, though not as well as I had hoped, but about as well as I expected. As usual, the administrative official was not very receptive to my pleas about getting more help in Ben's classroom. The Occupational Therapist and Speech therapist both seemed kind of pessimistic in regards to Ben's constant stimming and although they agreed that his cognitive skills have seemed to improve and he definitely works better than he ever has before, if left on his own, he will stim almost nonstop. We interviewed for a place at a different school called Frank Porter Graham, but Ben was one of seven students applying for a single spot in one of their classrooms and I am not even really confident it would be a good fit for him anyway, because of his desire to stim over doing anything else. Ben is off the gluten free, casein free diet, with the help of the enzymes, at least for the holidays. Then I will reasses any regressions that I've noticed or any digestive problems he has and decide what to do in the new year. He had macaroni and cheese for lunch for the first time in four months. He was in heaven. I think I got him to say "nana" today for banana, but boy, it's like pulling teeth to get him to say anything. He really has almost no words at all, although he's definitely improved in other ways. I will write more soon I promise!

The IEP is upcoming

On Wednesday, Rob and I have an IEP meeting for Ben and we're seriously thinking about replacing him. I think he needs to be in a different environment and so does Rob. The Lincoln Center isn't doing anything for him and he's in a class with 7 soon to be 8 special needs kids, mostly autistic, and because he's relatively happy and compliant, he isn't being pushed in the manner we would like. So I've been thinking about IEPs a lot lately, and IDEA law, and the "Best Practices for teaching Children with Autism". Stuff I never thought I would have to pay attention to, but now it's vital to Ben's progress. Sheesh!

Back In the Saddle Again

I gave Ben a regular waffle f0r breakfast yesterday, the EGG0 kind. He was fine f0r m0st 0f the day, w0rked great at speech therapy after sch00l, but yesterday evening he was yelling c0nstantly. S0 if n0thing else the GFCF diet affects his yelling, and that al0ne is en0ugh f0r me t0 keep d0ing it, because listening t0 c0nstant yelling affects 0ur sanity, a fact I didn't kn0w until the yelling st0pped. I'm pleased t0 rep0rt that Ben is n0w w0rking independently 0n a task by task basis. I can take all the pieces 0ut 0f a puzzle 0r s0rting task, and he can d0 the wh0le thing independently, until it's c0mpleted, and I d0n't have t0 pr0mpt him f0r each piece. That is a great achievement. He did five puzzles in church at the nursery 0n Sunday, and they were 0nes he hadn't seen bef0re. I give him a stim break in between tasks, like they d0 at his TEACCH s0cial gr0up, and this seems t0 w0rk w0nders. He watches a spinning t0p 0r plays with a squisshee ball f0r a minute and then I c0unt backwards fr0m 10, and he gives it up and w0rks the next task. He's als0 learned a new sign, the 0ne f0r CUP. I'm s0 happy t0 be rep0rting g00d news.

S0 Far s0 G00d

Well, we gave Ben regular pizza and n0thing much happened. I'm still d0ing the enzymes s0 it p0ssible that they're are d0ing the j0b 0f helping digest, but 0n the wh0le he hasn't regressed, his receptive language is still g00d, he's still d0ing his w0rk at sch00l and at therapy. He's still m0stly gluten and casein free, but I'm adding m0re back int0 his diet. The 0nly bad thing I've n0ticed is that he's yelling m0re, which had kind 0f subsided. I'm n0t sure if I'm just being super sensitive t0 it 0r n0t. I'm 0n the c0uch this m0rning as my back has started hurting again, this time in a different place that it usually d0es. I guess I'm falling apart. Get 0ut the 0ld heating pad, I guess. The pe0ple in charge 0f Headstart are acting kind 0f strage. I had written a letter t0 Ben's teachers at the beginning 0f the year inf0rming them 0f the changes in his diet, the enzymes and the high arsenic results 0f his hair and bl00d tests. I just asked that they be mindful 0f n0t letting Ben chew 0n the playgr0und equipment and wash his hands when he c0mes inside. N0 big deal, right? Wr0ng. His teacher f0rwarded the letter t0 the pe0ple wh0 run the Headstart and early interventi0n pr0gram and they seem t0 be freaking 0ut. They've sent the health dept t0 test the playgr0und equipment, but refuse t0 tell Ben's teacher what the results were, saying its "private". Yeah, but it's a public sch00l paid f0r by 0ur taxes s0 y0u can bet I'll be trying t0 find 0ut what they kn0w. N0w they want me t0 fill 0ut a f0rm s0 they can talk t0 Dr. Hines ab0ut the results, which I have n0 pr0blem with, but they already had s0me0ne call me (she left three messages 0n my answering machine in 0ne aftern00n- s0unding a little harried) t0 find 0ut the details, did Ben eat seaf00d the previ0us week bef0re the testing, what kind 0f testing is was, what were the exact results, etc. Anyway, they are making a way bigger deal 0ut 0f it than I am. Just put in s0me new playgr0und equipment and be d0ne with it, I say! Well, I'll sign 0ut n0w. Bye!

I Guess I'm a Lazy Bl0gger!!!

It's been a while since my last p0st. S0rry ab0ut that. But t0day, I am g0ing t0 give Ben a test. We are g0ing t0 take the kids t0 Chuck E Cheese's t0day after church and I'm g0ing t0 let him have pizza, the regular kind, with the enzymes 0f c0urse, and we'll see what happens. I'll give it a few days and keep him 0n the GFCF diet 0therwise. If the enzymes d0 what they are supp0sed t0 d0, we sh0uldn't see any difference. My plan is, if this w0rks 0ut t0 p0ssibly try intr0ducing hard natural cheeses, like cheddar and parmesan, int0 his diet, because they are all0wed 0n the SCD diet, and then maybe add s0me g0at's milk y0gurt. Eventually I will pr0bably try the SCD diet full fledged, unless we start seeing s0me very c0nsistent impr0vement 0therwise. But f0r n0w, it w0uld be nice if I c0uld br0aden his diet with0ut hurting the impr0vement he's made. His receptive language is s0 g00d n0w, meaning he f0ll0ws 0ne step directi0ns alm0st with0ut hesistati0n. He's w0rking really well at the therapist's and even yelled "Ahhh D0ne" when he didn't want t0 c0mplete a task with his speech therapist. His teachers at sch00l have n0thing but p0sitive things t0 say ab0ut him, but his Sp Ther. there says he's very c00perative but still n0t engaged in what he's d0ing. He still stims all the time, but can be redirected fairly easily. He's st0pped chewing 0n all the w00d in the h0use (thank g00dness) and is dr0pping things a little less 0ften. He's als0 st0pped jumping up and d0wn all the time, and n0w 0nly d0es it 0n his tramp0line, which he uses quite a bit. I'm trying t0 give him a l0t 0f meat t0 eat every day s0 that his ir0n levels will impr0ve with0ut the use 0f a supplement. He had a bad night last night th0ugh, and was up at 3:45 f0r wh0 kn0ws h0w l0ng, and s0 c0nsequently, is still sleeping as I write.

Talked With Dr. Hines Again

Dr. Hines did a phone consult with me on Sunday morning. We went over all of Ben's tests and she explained some things to me I didn't know and gave me some new recommendations. Even though, Ben's tests didn't show a significant level of mercury, she remains convinced that it is a major problem with him. He's very low on zinc and iron (iron deficiency alone is a cause of mental retardation) and the depletion of basic minerals isn't even allowing the mercury to come out in his urine, thus the low test scores. So we're still going to do the NDF Plus for now. As for all his food sensitivities . . . she says because he tested positive for 21 items, and that's pretty high, she says that definitely indicates a leaky gut (thought to be a cause of autism for those of you who are saying HUH?) and she is recommending another diet called the Specific Carborhydrate Diet, or SCD, which basically cuts out all grains and most starches, leaving basically protein, fruits, nuts and vegetables and some dairy. It's kind of like the Atkins diet. I've been researching it, and it seems to have a terrific track record helping all kinds of intestinal disorders, including kids with autism. But it will not be easy to do, so I'm still mulling it over. I thinks Ben has been doing well on the enzymes and a 99% gluten free, casein free diet, but sure, I'd love to shoot for the miraculous. I'm adding a probiotic to his regimen, on her recommendation. A probiotic is a dose of good bacterial cultures to help with intestinal healing. In theory, we should all take probiotics. I'm thinking about adding another enzyme to his diet, this one called No Fenol, supposedly it aids gut healing without the need to go on the SCD. I would love to find an easy way out of having to put him on the diet. I guess the good things about it all it, its short term. We should be seeing improvement in a month, if there is none, then he goes off the SCD diet. But I think I'll try the No Fenol first. On a positive note, some of you may remember I did the ATEC assesment two months ago and Ben scored a 102 on his autistic symptoms, which puts him up there in the severly affected category. Rob and I took the ATEC together ( to keep me honest ) two nights ago and Ben only scored a 62! So we've definitely seen some quantifiable improvement. Last night at dinner, he took a big bite of it (chicken with pineapple BBQ sauce and white rice, if you care) and said "Num num num num" and signed "more" before feeding himself another big bite. I think he was complimenting the meal! Tonight, I asked him if he wanted a cookie and he immediately signed "more" for it when I waited for his answer. I think he's getting the basics of communication down. Hopefully, I'll have more good news soon.

Th0ught 0n Katrina

Father J0hn, 0ur dev0ut, liberal yet s0metimes 0verly critcal priest said s0mething a c0uple 0f weeks ag0, even bef0re the wh0le Katrina disaster happened. He said in his h0mily that we did n0t get t0 live 0ur lives 0f c0mf0rt and pr0sperity here in Chapel Hill because we deserved it, 0r earned it, 0r even were w0rthy 0f it. We live here as we d0, as citizens 0f the middle class because we g0t lucky. We "w0n the l0ttery 0f life" as he put it, and we w0n it big. As I reflect 0n what happened t0 the very p00rest 0f the p00r in New 0rleans, I c0mpletely agree. R0b said the he g0t l0st in New 0rleans while he was visiting Keesler AFB and ended up in 0ne 0f the p00rer secti0ns 0f the city. He said the p0verty there was ast0nishing. S0me h0mes didn't even have d00rs. These pe0ple already had very little t0 begin with, and n0w they have n0thing. It makes anything I feel like c0mplaining ab0ut seem very miniscule. I c0uld rant ab0ut the unfairness 0f life, but b0y right n0w I d0 feel very lucky.

Playing Catch Up

I know it's been two weeks since I've last written in my blog. I'm going to blame it on the stupid O key on my laptop, since it makes me dread typing anything of any consequence. I'll use 0 instead. T0day is perhaps the m0st beautiful day all year. We're all 0utside right n0w c0unting 0ur blessings and enj0ying 0ur family. Katherine c0mpleted her first week 0f kindergarten last week, and s0 far s0 g00d. We had a bus mishap the first time she t00k the bus h0me fr0m sch00l (it came t0 0ur st0p 15 minutes early and I wasn't there yet), but it didn't seem t0 affect her a bit. Everything has g0ne sm00thly ever since. Ben started sch00l last Wednesday and s0 far, he's d0ing well. He als0 had his first TEACCH sessi0n 0n Wed f0r tw0 full h0urs and the teachers said that he did great! That was after being in sch00l f0r a full m0rning. I j0ked that he didn't have time t0 stim at all that day! Maybe the enzymes are helping. I've st0pped giving him the chelati0n supplement NDF Plus until I c0nsult with his Winst0n Salem d0ct0r next week. His lab tests have all c0me back and n0ne 0f them have sh0wn any excessive level 0f mercury, s0 maybe that's n0t his pr0blem. Just g00d 0ld genes I guess. Last night he was crying ar0und dinner time and he said "I da-dee" several times and I think he might have been saying "I'm hungry" but I d0nt kn0w f0r sure. If he was, he used the pr0n0un I c0rrectly, and that w0uld be awes0me. He did 0kay at the speech therapist this week, but Car0line and I had t0 stay with him while she w0rked. Car0line starts presch00l 0n Wednesday and b0th she and I are very excited ab0ut that. I can't believe all my kids are finally in s0me kind 0f sch00l. It's g00d f0r me and g00d f0r them. I pr0mise t0 write m0re s00n.
Kristin

School Starts Next Week

And frankly, it's not a moment too soon. I am looking forward to getting back into the swing of things. Ben has had a really good day today, except for a huge tantrum during the second half of mass when I ran out of lollypops and the nursery was closed so we actually had Ben in the church with us. There is no cry room. But Rob took him out, and the girls and I sat in for the rest of mass. Poor Rob, he said Ben was as upset as he's ever seen him. But aside from that, I had most of the afternoon alone with him, and he seems to be connecting better, making good eye contact, and laughing with me when we sang songs and played play dough together. I got some new enzymes in the mail yesterday, and I'm going to get really serious about them now. I hope that I can eventually take him off his Gluten free diet with the help of the enzymes, if I start to see improvement. I'm also starting a new brand of vitamins, just in time for the start of school. Rob and I seem to go back and forth with regard to optimism about the prospect of Ben's improvement. Some days, I feel yes, he'll eventually learn all the things he's supposed to and will be able to take care of himself as an adult, and other days, I'm just not so sure. I think he'll probably have to be in a special education classroom for at least the first few years of elementary school. I always wonder if he could be making more improvements if I'd just push myself a little more to create learning experiences for him. That's just one of the things thats always on my mind. Sometimes being a mom is hard.