Homework and Swimming

Summer is the time to be carefree, right? Well, not for our kids with autism. There's therapy all year long. It comes in different forms, and for Jack these days much of it is either incidental or supportive therapy. But he also attends summer PDO at his preschool 2 days a week for social interaction and a 9 week class at Franklin Speech and Learning for Kindergarten readiness called Academic Scholars. Thankfully, Jack LOVES Academic Scholars.

He gets lots of homework from Miss Amy, his teacher there. At first he wasn't too keen on it, but lately he's been much more eager to complete it. Even the handwriting work, which is his least favorite. Here he is working on his upper and lower case letters with the support of the "alligator snap", courtesy of his OT, Miss Shayla, from ESY. Miss Shayla is awesome!! And we are so proud of Jack's compliance these days! It is at almost 100%...and anyone who knows Jack knows that this was an area of great concern as we approached kindergarten!



Today Jack had some good ol' fun with his friend Owen, and Owen's little sister Olivia, at their neighborhood saline pool! Yay for no chlorine! Jack is putting his newfound swimming skills to great use. Tyler got his first dip in the pool as well. Jack was excited to hang out with his classmate, Owen, and thought it was cool that he was there for Tyler's first swim. When Tyler turns 2, Jack's going to give Tyler his floatie ring and get a bigger one, he said tonite at bedtime. What a thoughtful big brother!

Owen and Jack having fun!

Jack taking a lap around the pool, just because he can now!

Clearly the coolest dude in the pool, baby brother Tyler!

Fun In The Sun

Today was awesome. No other way to describe it. Jack and I had planned to go swimming today, and hoped that Mimi would watch Tyler so we wouldn't have to take him with us to the neighborhood pool, which has little shade. This is a big deal, as we don't go swimming often.

When I say not often, I mean not often at all. I'm not sure we even made it to the neighborhood pool during the entire summer last year. 1) I was pregnant (enough said) and 2) Jack has a weird response to chlorine. He gets really hyper and silly. We try to avoid it, seeking out saline and other chlorine-free alternatives whenever possible. And, since we swim about 3 times per summer, poor Jack has no water skills. He clings to my neck like a cat and fusses about getting splashed. Good times for all.

But today was different. I suppose I should be getting accustomed to this new change...but it still takes me by surprise every time, in a good way. Ok, back to the story...

Michelle called this morning to see if we were free. Seems the twins, also 6, saw Jack's reading video and wanted to play w/Jack. Cole called up and asked if we could get together. Once the mom's hatched a suitable plan we sprung it on the kids...swimming for all! They were so excited. Jack even cleaned his room in preparation for the boys coming over after swimming! Mimi came to stay with Tyler and we headed to the pool. After about 3 minutes of tentativeness, Jack managed to make it in and was standing in the 3FT section! Within 30 minutes, he was wearing a floatie ring, holding on to a kickboard and was swimming the LENGTH of the pool chasing after water toys! I was amazed! I swam out with him once and that was all it took. He was kicking great and having a blast!

After 1.5 hours, it was time to go back to the house and feed the baby. The twins were, at this point, bored with swimming, as it is something they do every week at the Y. Jack was, admittedly, a bit torn up over the thought of leaving, but I can't say that I blame him. The boys came back to our house, played for a while and watched a video before they headed home. Jack talked up a storm about how much fun he'd had swimming. I required him to soak in the tub for a bit with some Epsom Salts, and then we had an early dinner.

After dinner we headed out to Toys R Us, and then on to Target, in search of the perfect pool toys. We got a boat with a sunshade and swim diapers for Tyler, since I have a feeling he's going to be accompanying us to the pool this summer, and Jack picked out a kickboard, water balls, a blow up ring and a sit on float. He is all geared up for a great summer!!!

As for the chlorine reaction, I didn't see anything, except he got a little weepy at bedtime. That is really unusual for him, but he didn't actually cry. He was disappointed that he couldn't watch TV when we got back from shopping (it was 7:45p) but handled it well. He could have just been tired. Oh, and he had a very short (45 seconds or so) giggle fit over something Daddy said...so we'll have to keep watch for any "cumulative" reaction over the next few pool visits. And, if you have an alternative option where you live (Holly, Trina, Keeley, Amy), please invite us...my little guy is anxious to go swimming again!

Jack is reading like crazy!

Jack has become quite the reader of late. His comprehension seems pretty good as well. He's headed to Kindergarten in 8 weeks, and I think he'll be focusing his efforts in areas other than reading! We're so proud of him...he has picked reading up so easily and enjoys it as well. Enjoy "Father Cat's Busy Day" by Richard Scarry, Part I, read by Jack at bedtime on a summer nite, 6 years old, to his proud Mommy. It's long, so sit back and relax, if you choose to watch it in its entirety! (8 minutes) And to the skeptics in the crowd, no, he does not have this book memorized. It is only the 2nd time we've read it...

My Mental Checklist

The following have been able to be stricken from my mental checklist in the last 90 days, with the introduction of Namenda. To sit down and write them all out swells my heart. What amazing progress is chronicled here!


professional haircut, without incident
shopping with Mommy, going to as many stores as needed
being involved in baby brother's existence
helping around the house
dressing himself, shirt to shoes
buckling his own seatbelt
going to a playdate unaccompanied
sitting patiently through commercials on TiVo'd programs
talking on the phone
answering multiple questions about his day
spontaneously sharing information about his day (because he wants us to know!)
going to his first day of school, no aide, no supports, and getting a great report
allowing Mommy to go out at night without crying or worrying
doing homework without a meltdown
allowing me to take his picture without complaint (and smiling AND looking at camera)
walking in without incident, participating AND enjoying Sunday School
attending Children's Worship willingly
seeking out peers for play
coming when called 100% of the time
transitioning without protest, even from preferred to non-preferred task
doing homework willingly
problem solving
wiping his bum without assistance!

"Sweet N Sassy's Is the PERFECT place to get a haircut!"

This is the statement of the week from my six year old, former scaredy cat of all things hair-cutting related. I mentioned last week to him that it was time for a "real" haircut. Mommy's talent has not broadened nearly as much as I had hoped, and Jack's overall fear meter seems to be registering low. So, I gently broached the subject. "How about if Grandpa takes you to Snip Its?" , the location of his last professional cut a year or more ago (think tears, hunched shoulders, anxiety out the wahoo!). Note that I used Grandpa, the ultimate weapon, as he'll generally go anywhere with him! Jack pondered this and said "maybe". But then he added "I don't want to go to Snip Its. I want to go to the other place from a long time ago." That place is no longer in business, so I was scrambling..."Maybe we can find another kids' haircut place. How does that sound?" Jack said that would be great.

I tentatively called Sweet N Sassy, known for it's glamour girl parties and, sure enough, they cut boys' hair regularly! So Jack agreed to go on Monday.

Monday arrived and off we went. Mimi and Tyler went along too! Jack met Shelby, who was the most wonderful professional ever with my kid, and sat in her chair. No complaint about the cape, or the chair, or the haircut. So far, so good! A little cautious as she sprayed the comb...he made sure to warn her to be careful not to get his clothes wet, but sat and chatted with her and obeyed her direction (Look down at your knees for me). He was more nervous about the clippers but actually touched them with his finger and then agreed that they weren't so bad and allowed her to trim all that she needed to without complaint. I even noticed that hair was falling on his shorts and he was brushing it off! No meltdown in sight!

After the haircut was complete, he admired himself in the mirror and exclaimed that he looked handsome! And, well, he did! As I paid for his haircut, he selected a new Jibbitz for his crocs. Crazy store, had more toys and fun stuff than hair product. They sure know how to sucker punch the parents once you are there!

As we left, I felt myself pulling out my mental notepad...professional haircut without incident, check! I'm amazed at how many things are getting checked off that list lately since the addition of the Namenda (alzheimer drug). It has been nothing short of amazing...

Last night I asked Jack to step outside for a minute to take a picture of him with his new haircut. The sun was setting and the lighting was good. He hopped out right behind me and jumped into the grass, barefooted. I remember years ago him refusing to go anywhere outside without shoes. Times have so changed for the better for us! It really feels like easy street these days. And I thank God every moment for it!

Do you remember when I didn't love babies, Mommy?

Yes, these words fell from my sleepy boy's mouth recently just before bed as we were nuzzled up together on his "big kid's bed". "Yes," I reply, "I do remember." "But now I LOVE babies. Did you know that?" Um, yes, my sweet pea, I did know that as evidenced by the zillion times a day you are up in your baby brother's face...talking to him, singing songs to him, giving him his pacie, waking him from his ever so short naps, and all around doting on him.

Today Jack spent the afternoon with Grandpa while Mimi and I took Tyler on a shopping spree. We all arrived in our driveway at the same time. Jack came bounding out of Grandpa's car and was running right toward me. I was so tickled that he was so excited to see me....until he whizzed right past me and climbed into the backseat of my truck to greet HIS BROTHER. Yes, I am basically chopped liver. The mommy who hung the moon a mere 4 months ago is now second fiddle to a 14 lb. drooling smiling baby. Whodathunkit?

I'm ever amazed by Jack and his abilities. This new love for his baby brother and his serious response to being the Big Brother amazes me too. Maybe I'm unfair to him for being surprised, but I just didn't expect it so soon. But there is love. Full on brother to brother lifetime love. And it's not just Jack...Tyler's face completely lights up when Jack sticks his crazy antic, loud voice face up to him. It's most certainly reciprocated. Jack can't wait for Tyler to be old enough to sleep in his room with him. And it won't be long before Tyler will want to sleep there too. This is the joy of motherhood!

"Mommy, Tyler's love is forever, did you know that?" "Yes, sweet pea, I do." And I'm so grateful. It is truly a beautiful thing to watch.

The "6's" go on holiday...

Mom touted it as the "Sixes" trip. Mom is 66, Dad just turned 66 and Jack is 6. Cute, huh? And corny. That's my sweet mom's style. And I wouldn't have it any other way...

Tyler and I headed out to the airport to greet the weary travelers. That sweet little boy was a sight for sore eyes! This was the first time I'd ever been left by him...it is usually Scott and I traveling with Fort Dearborn each year leaving Jack home. But this time I was the one passing by his dark, empty room each nite. It was great to enjoy our new baby without any distraction or additional responsibility, though.

Jack has a fantastic time. He was "super Jack". Mom and Dad said he was so easy to travel with, he wasn't rigid about how they spent their days, and was an all around joy. Atta boy! He faced his new fear of Splash Mountain only to get pummeled by a giant spray of water. Splash Mountain is back on the "No Ride" list. He enjoyed a 90 minute backstage tour of The Land, one of his favorite Disney rides (located in EPCOT). He especially enjoyed the Sleeping Plant, and proceeded to close many of the leaves as the tour guide talked about horticulture. Mom said that Jack corrected the guide when he neglected to mention that the tomato plant's record for tomatoes was a "guiness" world record. Shame on the dude!

Jack was also smitten with the Jungle Cruise this trip and declared that he might like to become a Jungle Cruise boat driver when he grows up. Oh my! We can add that to his list of adult occupations, which also include doctor and scuba diver. And he was anxious to talk to Crush again at the Turtle Talk with Crush attraction at EPCOT. He was prepared this time with his question...he asked Crush an all time favorite..."Why did the chicken cross the road?" complete with answer..."To get to the other side." Crush wasn't as amused as the audience was!

I'm especially proud of the fact that he ate some baked chicken, cooked especially for him, at the Land restaurant. This would be the first chicken he's eaten in a restaurant in easily 3 years, if not more. While he only ate a few bites, this certainly serves as a noteable moment in his progress! Way to go, Jack!

He even arrived home with gifts for each of us that he had handpicked. I got a nightshirt that says "Not all mornings are magical" and Daddy and Tyler got Test Track key chains with their names on them. It was adorable and he was very proud of what he had chosen!

Overall, the trip was a smashing success. Who would have thought a year ago that this would have been possible? The Namenda medication, an alzheimer's drug, has been an amazing treatment for Jack. I'm amazed at the ease at transitions, the compliance, the lack of meltdowns when disappointed or scolded...it has been one of the integral pieces to his recovery. And what great timing...with the baby and with the removal of his class assistant, it couldn't have come at a better time!

Disney or Bust!!!

Jack headed out on Wednesday with his Mimi and Grandpa to Disney World for SIX DAYS!!! 6 whole days without his Mom (and Dad and baby brother!) He was raring to go on Wednesday morning, when he popped out of bed and yelled "It's Vacation Day!" I was telling Jack what the schedule would be in the a.m. I told him "After you get dressed and have breakfast, we're leaving for the airport. Mommy has to go to Mimi & Grandpa's to pick them up." Jack said, "But I can't be at the airport by myself!!" It was so cute...

So we were a little rushed getting to the airport. The airport traffic patrol was out in full force, and the guy was watching my parked car curbside like a hawk. So, I took a few pictures (seen above) and said a quick goodbye. Apparently, as I drove away, the sand shifted beneath Jack's feet. He started to panic, saying that I was "lost" and that he couldn't find me. This went on through the ENTIRE airport...security, etc. all the way to the gate. I think this was stressful for Mimi and Grandpa, but thankfully this was not a foreshadow of the rest of the trip.

By the time they boarded, Jack was excited to head to his favorite place in the entire world...the land of Disney. He patiently trekked around Orlando as they picked up their rental car, special foods, groceries for the condo, etc. But once they got to the condo and dropped off their luggage, Jack was ready to hit the park! He has spent each day from morning til dark at the Parks. I've been hearing about it in little 4 minute or so phone calls several times each day. It sounds like they are all having the BEST time!!! I can't wait til they get home tomorrow so I can see and hear all about it!! We all miss him and are ready for him to come home! And I am so proud that he's able to do this. What an accomplishment!!!

Taekwondo...but not the REAL Taekwondo

Connor is in Jack's class at preschool. An unlikely pair, Connor stands a head and shoulder over Jack. Perhaps he's a gentle giant, for he and Jack have taken to each other like playdough in your fingernail. Jack loves playing with Connor, and his 4 yr old brother Aidan. Connor's mom, Michelle, has been an awesome friend. She has taken Jack to school and picked him up countless times as I treaded the waters of mommyhood with a newborn again. Last week the boys had an outdoor playdate at Connor's, and Michelle even came by to pick up Jack's new bike! They are an awesome family and, sadly, they are moving to Texas. God works in funny ways, huh?

So, yesterday Michelle picked up Jack from school and brought him to their house to play. Jack informed me that they played Knex. Sounds like fun. Then Connor got into his taekwondo outfit and the 3 boys, Connor, Aidan and Jack were off to Taekwondo. The plan was to have Aidan and Jack watch, but as soon as the class started, or so I'm told, Jack ran into the group shouting, "I want to do it too!" Graciously, the teacher allowed Jack to join in with the students. He participated in the class and was really excited about it when he got home. Michelle said he did good, considering it was his first time and that his motor planning is really slow. Overall, it was a perfectly fantastic outing, and such a normal 6 year old experience. I was just glowing.

Michelle said that the class instructor mentioned a summer two week "camp" that might be a good opportunity for Jack to receive more individualized instruction. I asked for more info, but don't know yet if I have a budding taekwondo master on my hands or not. In fact, he was telling me about it this morning, saying "When I was doing taekwondo with Conor and Connor (both from his school class) and my other friends, we were playing tag during the break. It was so much fun." I asked him if he'd like to go again sometime and he said, "Ok, but not the REAL taekwondo, okay?" I have no idea what that means, but maybe taekwondo will turn out to be a group sport that suits Jack perfectly!

Since I have no pictures from the Taekwondo field trip/play date, I thought I'd include a couple from Jack's recent photo shoot. I think he needs a few lessons and it doesn't help that our new camera is so heavy!

Happy 6th Birthday, Jack!

Our sweet little man is officially, as he calls it, a "big kid". Timely, as there is a new baby in the house. And, most importantly these days, he is a "big brother" and loving it! Turning 6, however, didn't win him over with the same ease as becoming a big brother. See, Jack has a fear of kindergarten. No, I did not tell him that monsters teach kindergarten, or that he'd have mountains of homework, or that he'd have to walk to school both ways uphill barefooted in the snow, but somehow, somewhere, he got an image in his cute little head that KINDERGARTEN IS BAD! In fact, he recently has offered to kindly "skip kindergarten and go straight to first grade". Uh, ok but NO and bad idea, dude!

As his birthday was approaching, he shared with us that any incoming birthday gifts could be held over until Christmas. He was not going to turn 6 and he was NOT GOING TO KINDERGARTEN. (Stay tuned through August to see how this plays out) We downplayed the entire concept of his birthday and somehow convinced him to choose a party location, which was the always fun for the family Chuck E. Cheese's with his preschool classmates.

Then, magically, one night after I had tucked him in he hollars out to me as I am leaving the room "Mommy? How many more days until my birthday?" as my sweet boy just can't resist a good countdown. I do a quick finger count and say "13". "13???" he replies, "Cool! Goodnite, Mommy!" Birthday is back on.

So, he's turned 6. He had a fantastic birthday week, which is my favorite way to celebrate a birthday. He ate his weight in cake (GFCF, of course), and celebrated with family on the 8th after dinner, the 9th with his class at Chuck E.'s and again on the 12th in a combined party with his Grandpa, who is quite simply his favorite person on the planet. Although, I must admit that little bro Tyler is giving Grandpa a good run for his money! His cake of choice, this year, was a Return To Neverland Cake, aka Peter Pan II, and was less than up to my usual extremely self pressuring standards, given my post partum state. Funny how a new baby and lack of sleep can cause you to lower your personal standards!

His favorite gifts? His IPOD shuffle and his new bike. He enjoyed the festivities and was thrilled that all but 2 of his friends were able to share in his big bash.

My favorite moment? A quiet, average moment, I suppose you might call it. We took Jack's annual birthday photo in Daddy's shirt. We've done it every year since he turned 1. And, each of the years 2, 3, 4 and 5, it was awful. A nightmare. He screamed, cried, flailed...and the pictures prove it. Sensory nightmare to be trapped under a huge, overstarched, white mountain of shirt. But this year, as I explained that we do this every year on his birthday, and how one day he will fill this shirt, he smiled and giggled a bit. He put it on, waved his giant shirt arms around and said, "Look at me! I'm a witch!" No screaming, crying, bribing, disappointment...just a great picture of a darling little boy who will one day fill that shirt as he becomes, what I am sure will be a wonderful man. So, this proud mom would like to share this picture with you. Doesn't look like much to some, but to me it speaks volumes. Progress is being made with our little guy...and it is measured in the most typical of moments. Enjoy.

2008! New Year...New Endeavor!

1/25/08

I am often asked if I will return to the blog. Seems many folks would like a look inside our world of autism recovery and daily living to see what goes on. But I haven’t obliged. I’ve kept busy, attempting to balance the demands of treatment with a bit of normalcy. And it has felt good!

But time ticks on. Jack is just a few months shy of his sixth birthday and we are still working at overcoming autism. Still. Guess I thought we’d be done by now. Might sound silly to those who aren’t involved, but all my fellow warrior parents understand just what I mean. We get the diagnosis and we all sign up for our tour of duty. But your paperwork doesn’t tell you when you’ll get to “return home”, if ever. So we make up a time that sounds reasonable. “I’ll put in 3 years and by then, surely, we will have won the war!” Then, at the end of two years, we see that the conflict is taking longer than expected to resolve. “Hmmm,” we think, “maybe I can stick it out another 18 months. Surely by then we’ll have won!” That’s where I am. I’ve figured out that this is definitely a LONG process. There isn’t recovery at 5 for us. 7 or 8 now sounds perfectly reasonable to me! So, I’m regrouping. Oh, and gestating too. Just 11 days to go until we add yet another element into the mix…the bringing home of our latest family addition, our second son, Tyler.

Amidst the impending chaos, the blog has risen to the surface, crying out to me. Perhaps it will ground me…or keep me sane…in the days and weeks ahead of sure change. I don’t know, but since it calls, here I am.

2007...Plenty to say but no time to say it

Life was moving at a fast pace...and well, I was pregnant. Enough said.

5/24/07

Summertime, and the living is easy. Or at least we hope. Today was the first day of summer break. We all headed over to Kristi’s for a “waterslide party”. Bathing suit and Nemo towel in hand, we headed over for a great day among new friends and old. We were there from 11 until 4, when we shut the place down. Overall, Jack did awesome. He ran around, tried to engage the kids at times, played alone at times, and had a great time. He did start to cry when it was time to leave, and he said that he didn’t like leaving. I was thrilled that he had so much fun. We came home, grabbed a quick bite and were off to Daddy’s double header softball game. Jack was disappointed to learn that he was the only team kid attending tonight, and got bored easily. He was ready to go after 20 minutes or so, but managed to stick it out for the entire 2 hours. He tumbled into bed tonight, wiped out from a funfilled day. No therapy, no special efforts (other than his gfcf lunch!). It almost felt normal! I watched him harder than the other moms did with their own kids, and I worried when he played alone for too long, but then as the kids began to leave and the crowd became more manageable, he came more into his own. The best interaction of the day was in Kristi’s garage with just 5 kids. He was riding a bike and the girls were commanding him to stop/go. He thought it was great. I don’t think his interaction was age appropriate, but it was good enough for today. He’s made giant leaps…and this summer just might allow us to reap the benefits of all of his hard work.

We talked today in the car about fun things that we could do this summer. He loved the idea of his very own “waterslide party” and offered that he wanted cake and ice cream at HIS waterslide party. We talked about going to two twin birthday parties this month and other fun activities, like a visit to the library, zoo and aquarium. There will be group speech and private OT, and summer school with an aide, but the days of scheduling around nap, aba, potty training and various other autism related events are behind us…perhaps temporarily and perhaps for good. I’ll take either one right now!

I’m determined to figure out the root of his scripting, the evil that sets him apart so strongly in social settings. Without it, it is so hard to see his weaknesses. With it, it’s a 2 x 4. So summer, here I come! I’m headed toward the fountain of knowledge, and I’m coming with a sword. Viral, yeast, or something else? I warned Scott that this is my summer goal. He better put his thinking cap on…

2006 - Has come and gone!

2006 entries...that never made it here.
Jack’s Journey…and my life as his mommy

January 2006 -

1/7/06

Today was a peek into the future. We have turned a corner. I have normalcy in my sights. Perhaps a day without therapists, special preparation, special everything…today allowed me to believe that this will be a reality. We went to see “Joel, the Singing Cowboy” at Borders. Jack had never seen the show before, but was unphased by its novelty. When Joel had the kids come sit with him on the staired stage, Jack jumped up and wriggled in right between the kids. When they patted their laps, he did too. He didn’t stay seated the entire time, but neither did many of them. Then he went and got a book, came back and asked the boy next to him if he wanted to read the book. There they sat, looking at a book together, each one’s hand on one side of the pages. Kristi was there and she was elbowing me…”He looks great! No one here would even know…” I beamed. I know. What a moment. When we were leaving, he was crying. I asked him why he was crying and he said “I’m sad”. I asked him if it was because he wanted the Thomas book that I wouldn’t buy or because the show was over and he said “the show is over. We come back again?” Sweet thing. This is the first time he has answered a why question, albeit prompted.

We were headed to the grocery, when I offered a visit to Daddy’s office. He was quite agreeable to go see Daddy at work. Once there, he painted a picture and wrote his name on it and gave it to his proud Daddy. Then we headed for the grocery. He informed me that he wanted to “walk in the store”. We even got a balloon, another first! What a great, normal outing. What a great, abnormal day!!

7/20/06

Why did I abandon the journal? I do so love to be able to read the old entries, beaming with pride at the progress our little guy has made. But, selfishly, I’ve kept all those thoughts inside. I wish I’d continued it…But, I’m back now. SO, here goes. Mid June, Jack was doing fabulously. Seriously fabulously. Scott and I were considering taking a vacation, a real destination vacation to the beach, our plans squashed only by the fact that we have no vacation funds. But the point of the discussion was that Jack would enjoy it and, consequently, so would we. Finally. And on a Thursday, Jack had an EDTA IV. This one is rough on him, and the last one he’d had effected him for a week or so, but this one started out mildly. Even through Sunday, he seemed no worse for the wear. Then Monday came and so did a cold. I had caught it too. Never a fever, it was still a nasty cold, assumedly a virus of some sort. I don’t know if the death grip came from being set up poorly by the IV or the recent introduction of Valtrex, but this cold grabbed Jack by the britches and wouldn’t let go. It lasted a good 2 weeks for me. But for Jack, it has been much longer. As recent as yesterday, which was 23 days after the onset of the virus, he had a super screaming fit. He protests everything, and some things rather violently. He’s watching tons of videos (or requesting) and scripting is back again. I so loved when that was gone. It’s hard to have him here, talking about something else, thinking about something else, not listening to you. Especially when this was not an issue just a month ago.

On the plus side of the chart, however, Jack has taken to coloring. He’s been coloring in specific colors on line drawing pictures as well as scribbling on paper with crayons. He’s even requesting to “color”! I’ve never seen him interested in this before. He’s also doing remarkably well in our newest adventure: potty training. He has been in underwears, as he calls them, for a week now, and doing great. He’s able to go longer between toileting, and for the most part is not having any pee accidents. He is currently pooping in his underwear, but hey, one thing at a time. I stocked up on cheap underwear at Sears this week, so it’s ok. And Pull Ups are a thing of the past. Just like that. Gone. Crazy. I’m so proud of him. We started putting the potty out in the den months ago, and then pushed him to go little by little. We worked our way up to a reward system, and he was getting presents for peepeeing in the potty. Then he started to earn tickets, which he put in a silver rabbit bank in his room. He’d get the ticket and bound upstairs to put his ticket in the bank. When he got 20 tickets, he was able to trade his tickets for prizes. That lasted for a while, until we implemented the poopy prize box and pee pee prize box this week for initiated pottying. One morning he managed to squeak out some pee 3 times between 7:50a and 9a to get 3 pieces of a tunnel/bridge for his GeoTrax set. That sneaky kid.

He loves his new teacher, Miss Dana. And, after a small fiasco with his summer EA, we were able to acquire Amanda to attend summer school with him. He had zero issues transitioning into that classroom, even though he’d been in Penni’s room since May of the year before. He still speaks fondly of Miss Penni, saying that he likes her, but he’s quick to add that he likes Miss Dana too. I hope our 4 yr class this fall will be as good of an experience as the last 6 months at Judson have been. I do pray that Linda will come back and be his EA in the fall. I really think that she will do everything possible to fade herself by the end of the year.

For some reason, this month has been extremely tough on me. I’m in a funk. I lost 11 lbs in the Spring, and that made me feel great. Now I’m all yucky and depressed and feel the pounds coming on…possibly the result of what seems like a month long eating fest. It’s hot and I hate hot. We’re broke, with Scott’s sales lower than expected, and money is super tight. Scott and I are in our everything’s ok but it’s not/roommate phase still, and it really eats at me. I want a boyfriend. Specifically, I want him to be my boyfriend. He seems not to need this from me. So we are in different places in our needs for our relationship. I KNOW that money is a concern that feels like a brick on his chest, since our bills don’t stop pouring in, but I know that I would be happier if we had a romantic relationship. I’ve tried to mention this, but it’s just not sinking in. That is surely contributing to my state of mind. And, Jack’s illness this month has been so hard to watch. To know that he’s struggling so much more to get through his day is hard. And, to know that all the progress he’s made is delicately balancing over a chasm of all the old auti behaviors, and that it could all cave in that hole with an illness or some other uncontrollable event is just maddening. You want to believe that he doesn’t toe walk anymore or eye stim or drop toys behind a surface or any of the other things that he “used to do” because he’s “past that”; healthier. Then he gets an insult (I’m thinking virus) and it all comes rushing back. The good skills are still there too, for the most part, but dang! That old stuff was just in the closet, not thrown out with the trash and long gone. I can’t protect him from viruses. I can’t protect him from communicable disease. How vulnerable will he always be?

Mom and Dad called last week after returning home from their 4th of July visit. Mom made a point to tell me what fun she had with Jack while he was playing on the waterslide in the backyard. They took him to see “Cars” also. She said, “I almost took for granted that we were interacting with him and playing with him. Thank you for giving us our grandson. He is so much fun. We are so happy.” What a great moment. Jack is so interactive now. Tonite he reached up at bedtime and grabbed my nose. He pulled and pretended that he had it in my hand. I asked for it back and he said he was going to put it in my pocket (after he realized that he didn’t have any pockets on his pjs). Then he pulled it out of my pocket and put it back on my face. It was sooooo cute. And so typical. He is a beautiful little boy. Some days I try to remind myself that he’s only 4. I notice us all sitting around talking and we’ve all adjusted our recovery goals. Tess, Michelle and I all now say 6 or 7. But really, is 6 or 7 so old if by then he truly does seem just like everyone else? He’s come soooo far since last year. And last year from the year before that. What can we possibly expect in the next 12 months? Donna remarked on the change this summer from last summer, when we were visiting in Boston. At that time, Jack didn’t speak to her, nor did he speak to Wes or Will, he could not answer a Yes question and he scripted constantly. This year he was asking Wes to play with him, speaking to Donna directly, even telling her one day that he loved her, and talking up a tremendous storm. His pretend play is up, he enjoyed bowling tremendously, and even enjoyed Wes sleeping in his room with him. They imitated each other and really seemed to have a good time together. I try to remember these gains, this remarkable progress, in moments like these when the hours are bumpy. The road is still long and straight and heading upward.


7/23/06

Potty boot camp has commenced. Sound the alarm! Actually, it is going quite well. Perhaps that is what happens when you get serious after your child turns 4 and has just transitioned from a six month “ice breaker” into pottying full-on. We went 100% underwear 11 days ago and are not looking back! Up until today, I was doing a large percent of the work. He was essentially scheduled trained for #1, and #2 was an all out disaster. But I found cheap briefs at Sears and was prepared to go the long haul with the BMs in the underwear. Yesterday he had 3 BM accidents in his pants. 3! Whew. Today, we instituted a new policy. His reward for pottying by himself was 2 Peep episodes. Then the video was turned off. It worked great and he pottied on his own to earn his movies. He had 1 accident in his pants late in the afternoon (BM) but it seems like that was the catalyst for change. After that he initiated going to the potty for the BM two times in a row, and the second was monumental (he was mid-meal at dinner!). Great job, Jack!!!

He was also much more like his old self, albeit scripty and a little too protesty. But, all around, he’s much more like his old/new self. Thank goodness. I was really settling into a low state. It is infuriating how my mood ebbs and flows with the tide of his behavior and ability. Poor little guy. He has no idea that he has the ability to swing my mood like a pendulum. If he knew, I’m sure he’d be on his best behavior to allow my best self to be the only presence he has to deal with. My less than best self can be a little unbearable, I’m sure!

11/18/06

Time keeps on ticking. That is for sure. We’ve witnessed an amazing transition for Jack to a “great state of being”. Started in mid September with the introduction of Spironolactone. Jack became a boy with delays. No “issues”, just delays and a rather noticeable love of numbers and time. That sweet boy taught himself how to tell time in little over a week in October. Just did it. I didn’t even see it coming! Sat down with a Dora time telling book each time he was on the potty and before we knew it he was telling time on our Roman numeral kitchen clock! We thoroughly enjoyed the two months or so of all around awesome Jack. And then last Saturday, the protesting returned. Slowly but surely over the week it has become evident of some change. Something is definitely out of whack with his system. If only we had more clues!?! After a predictably rough day at school, which had his new aide sweating, I decided to rotate his antifungals. It feels like yeast. I always second guess my gut, but so many times I’ve been in this place and every time before I have been right with my instinct. So, I took him off of the Nystatin/sporonox combo that he’d been on for 40 days and threw in ketoconazole. I have no idea if this will work. I pray so. Life was so easy and Jack was so happy. Transition was a breeze. Today was day 4 on the keto. I know it takes 4-6 days for a new antifungal to work, so I’m not sure why I’m getting nervous, but I fear that yeast won’t be our culprit and we’ll be in the dark on how to change his treatment. I also dropped his Spironolactone dose from the recently upped 37.5 mg dose back down to the “we know it works” 25 mg dose. I pulled Taurine back a few weeks ago, so to add that back in will be my next mystery play. His teacher and aide were both quite taken aback this week as the protesting raged and, frankly, so was I. The roller coaster is so difficult for us all. How can we get him to such a great place, only to see him take a big step backward?! Poor baby. I so want him to break free of these chains of autism that often bind him. He’s made such great gains…I want it ALL for him. And for us.

Short and Sweet

Last Entry of 2005...
10/7/05

As I sit down to write, I am saddened by the time that has passed where my thoughts were not captured. Lots has happened during these 3 months. I’ll have to go back and retell it as best as I can. However, since the pizza man will be here in a few minutes, it will have to wait for another day.

Old Musings...Playing Catch Up

I'm going to play catch up...here are a few entries that never made it to the blog...
7/11/05

The magic continues…Jack’s language “burst” is still a steady stream of activity. At school today, his teacher and aide both commented on how appropriately he is talking! He picked up his art project (a face on a stick) and handed it to me, saying “here you go”. Then he said to me (as I was carrying his backpack) “zip it in the pocket”. He happily hugged his teacher, saying “Bye Miss Penni” and then “Bye kids!” He even tolerated an overpowering hug from his sweet friend Laney. He also sat well during circle time AND…tah dah: rode a tricycle at school for the first time, JUST LIKE THE OTHER KIDS! Woo hoo for Jack! You go, boy! I talked to Jack’s home team ABA consultant tonight and mentioned some of the things he’s been saying. She couldn’t believe the improvement in just 3 weeks since she last saw him. She’s going to come over tomorrow to see it with her own two eyes. It sure is impressive….

Apparently a notice was going around that high chairs are for babies, because now Jack only wants to sit in a “Brown Chair” (our wooden kitchen chair). He started out wanting to sit in “daddy’s chair” but we’ve been able to appease him with a chair of his own in his usual place at the table. So now, if you peer into our kitchen window at mealtime, you’ll see the three of us, happily gathered there, each in our own big person chair. My, what will be next, a big boy bed and big kid underwear? That’s too much to think about!

Jack’s new passion is painting. Not finger painting, of course, for our little sensory guy, but it is exciting nonetheless. Picasso he may not be, but enthusiastic captures it well. He has 10 jars of paint, and loves to use them all. He has a big brush and a small paint brush, and uses them alternating and sometimes simultaneously! Amanda, his school ABA therapist, swears he made a smiley face today while painting, but it just looks too good to believe. I need to see that one with my own two eyes before I declare it an official milestone mastered. We are proud parents around here, beaming with delight as our little boy comes into his own.

Meanwhile, autism has eaten away at my soul. It has taken my easy carefree being and replaced it with a “Mother Warrior”, soapbox in hand, attitude. I feel like I am alienating my friends, and it seems an inevitable destructive path with no alternative route. My occupation has become “autistic child saver” and it has come with a price. I am racing against time, swimming upstream against modern general medicine, and am fighting desperately to keep cynicism and bitterness at bay. I am at peace with our “journey”, and know that I am not weathering this storm alone. As the old saying goes, the footprints in the sand on my journey aren’t mine….for I am being carried. This, I know for sure. Yet, amongst the autism research abstracts, continuous monitoring of Jack’s abilities and weaknesses, and national media suppression of the Truth, I grow a little more tired each day. There is less to give to the other, less immediate causes surrounding me…family, friends, hobbies, even to my husband and, honestly, to myself. I choose to blanket my spirit with other like minds…they know this battle the best and offer support in a way no other can.

Jack LOVES the camera now!!!

Thanks to treatment with hyperbaric oxygen therapy, Jack now loves to "ham" it up for the camera! Here he is on his homemade crash pad, courtesy of his Mimi, smiling happily and saying "Cheese!" 

Fantastic 4th of July

7/4/05

Fantastic Nite Under the Stars We had a great night tonight...we loaded up our energetic little boy and drove down to the City’s 4^th of July event at Crockett Park. I don’t know what Scott was thinking but, like always, my hopes were guardedly high. Last year had been a great success, but this was a new year…and things are not always the same for this little guy. I hoped he wouldn’t get frustrated by the waiting (we were arriving 1.25 hours prior to the launch) or frightened by the fireworks themselves. We told Jack at home that we were going to see the fireworks and he seemed excited, saying “Let’s go to the car. Let’s go see the fireworks.”

We arrived at the park, along with the entire motorized population of Brentwood and Jack said “Look at all the cars!” as he gazed out his window to the stream of cars parked along the road. We were directed to what turned out to be the world’s BEST parking spot, in an adjacent church parking lot, atop a small hill (and near the exit – a bonus!). We began to walk towards Crockett Park, when we passed the church’s playground. There was a big kids area (5-12) and a tot lot (2-5), which turned out to be perfect for Jack. Challenging enough, but nothing dangerous enough to warrant the eagle eye parenting I have grown to anticipate at the playground. It was populated with toddlers and their cautious (and not so cautious) parents. Jack was excited to spend some of our “wait” time here. We watched him try out each area of the playground, even eyeballing his new found interest, the sandbox. The weather was fabulous for a Tennessee summer nite, 78 degrees with a breeze, and this was an “easy” moment in our parenting. Jack looked like a typical kid, perhaps a bit on the anxious side, nervously yelling “Mommy!” when some big kids stormed the play area and ran up the slide. All in all, he was holding his own just fine. About 30 minutes before the fireworks were scheduled to begin, the playground cleared out, and we had the whole tot lot to ourselves. It was a neat moment, Scott and I standing, chatting, while Jack climbed and slid and hollered for our attention. Then Ben appeared, 6.5 and friendly. He was alone with his mom, who had set up firework viewing camp in the big kid playground area and was engrossed in a cell phone conversation. Jack took to Ben right away. After a few minutes, Ben was performing for Jack, jumping off the end of the slide as Jack would yell “Do it again!”. The boys really interacted great!!! Jack was following Ben's every move. Ben was standing at the bottom of the slide making a tunnel for Jack, and Jack would slide through and shout "Let's do it again!". Scott asked if Jack always played this great with other kids. I was proud of that moment for Jack and glad that, for once, Scott was getting to see an awesome moment, instead of only hearing about it back at home at the day’s end.

Then the fireworks started and Jack snuggled into my lap on our blanket. We too decided just to set up camp in the big kid playground area, which happened to have the perfect view of the fireworks and easy access to the car! Well, Jack just LOVED the fireworks. He said "More loud ones!" and "I want to see more fireworks!" He was so sad when it ended, but transitioned nicely to the car. Scott got to see him interact with the boy and the mom said she couldn't tell Jack was autistic (God love 'em for their ignorance!) A great family nite for us and a perfect outing! Yay! A 4^th of July for the recordbooks!

Journal Jan - May 2005

January 2005 -

12/1/04

Lots of changes in the last few weeks. Jack was really doing so well. Late October and November were great. There’s an awesome little boy in there. Now to get him to the surface. We’re banking on the fact that we are going to hit a rough patch that, once beyond, will bring amazing things. I hope we are not disappointed. We’re counting on this!

Jack’s teachers, the school days of the 18^th and 19^th, were beside themselves with praise for Jack’s behavior, compliance and overall “typical-ness”. I am so proud of that! Jack sat in circle time without being prompted, attended perfectly during Flashcards and all around was a sweet boy with a special spark in his eye that his teachers said they had not seen before.

We started TD-DMPS 3 days following the first B-12 shot. Didn’t see anything good or bad. That sounds good to me. Then on the 23^rd, just around the time we arrived at MeeMee’s for Thanksgiving, Jack started screaming more. He was a bit resistant when asked to do some things, like sing, which he had been willingly been doing for the past few weeks. We assume the change is yeast related, as DMPS can trigger yeast growth. We had also dropped the dose of the Nystatin from 8 tsp/day to 1.5 tsp/day maintenance dose. By the time we got home on Sunday, the 28^th, there was no guessing that something was going on and it wasn’t necessarily going to be easy to deal with. Monday afternoon ABA session was ugly, as were ALL therapy sessions Tues & Wed. Additionally, we are seeing more screaming and increased difficulty in transitioning. Meltdowns at bath time, etc. Oh boy. What fun.

Our OATS results show elevated yeast and bacteria. 2 new scripts. Hoping that what we are seeing is yeast related and will dissipate with the Diflucan, but also preparing ourselves for a bumpy ride for 2 or 3 months if this is DMPS related. That would be all of December, January and possibly February until there might be light at the tunnel’s end. If that’s the case, it’s going to be one dark winter. Ugh.

A little note about the B-12 shots. Seems I’m an idiot. Correction: seems I am truly a non-medical not-even-able-to-be-called-an-amateur uneducated idiot. In my defense, the pharmacy sends a vial that says .3cc per day and a bag of syringes. That’s it. No instructions. Nonetheless, we have been dosing at 3 units (the syringe, of course, uses different language). Figured out yesterday, 3 weeks or so into the shots that we are supposed to be giving 30 units. What a big fat duh!!!!!!!! No wonder we didn’t see any magic.

Going to an ENT doc on Friday. Had some nose issues that just won’t quit. The most bothersome is a feeling that my nasal cavity is constantly closed. This may be due to an allergy issue, which would be another doc altogether. Might be caused by the enzymes. It is driving me crazy! I don’t have time to have ISSUES!

NEWEST INTEREST FOR JACK: Dora! Especially the Dora episode with the TRAINS. Go figure.

12/12/04

One month since the start of DMPS. While he hasn’t begun rattling off trigonometry equations, he has not begun biting himself and running up the walls either. Guess I’ll take that. We’ve seen a slow and steady consistent measure of improvement. Is it greater or faster than what we’ve previously seen? It sure is hard to tell. Could this be the greatest placebo trial?? He was a bit more stimmy a few weeks in, but that seems to have leveled off at a somewhat “normal” state.

1/12/05

The ride of a lifetime…every day. Today started out like many others. Busy! Wednesday is our early day: we have to be out by 8a. At 7:05 THIS morning, we were all still tucked safely in our beds with visions of sugarplums. I sprung out of bed and got dressed, foregoing the a.m. shower (again) due to time constraints and lack of desire (we’ve been up until midnight or later each night this week watching Season 2 of 24) and raced to fetch sweet Jack and hurl him gently into our Wednesday abbreviated morning routine. One thing to note: he was awake, but was not scripting. I heard a peep once or twice, but no Dora “blah blah blah” at all. Not sure of what to make of that, so I’ll just note it. He brought his blanket and pacie with him to the rocking chair (also less than usual) and we rocked for a bit in silence until he requested going downstairs to watch a movie (daily occurrence). Cuddling and quiet on the couch, I turned on Sesame Street, which was watched with limited enthusiasm. We rushed through the morning routine and I wondered, for a moment, what the day would bring. OT and ST were very positive experiences. Susan commented on how engaged and happy Jack was today, which I had noticed yesterday all day! So giggly, in an appropriate way. Such big smiles. Such LONG looks. Joy. Since we wrap up early on Wed., I thought we’d dash over to the big park for some recreation. Oddly enough, it is 68 degrees here today. There were only 2 kids at the park, and they looked just slightly younger than Jack. They were chasing each other down the slides, giggling happily, clearly excited to play together. A few times one would cry out to their Mom, “But she won’t slide with me. I want her to!” Jack had a less than peak performance on this day. He chose to run laps around the perimeter of the park on the sidewalk, scripting Dora as he went. Last summer he loved to play on the equipment here and could swing for :30 at a time! Today he barely gave the play area a nod. I finally intervened, to his dismay, and interrupted him every ¼ of the circle and made him swing or climb or slide. Once completed, he could go back to the perimeter. He hated the intervention, and collapsed and screamed each time I forced him to “play”. Other kids his age came to the park, and my attention to his abnormality at the play area increased. Finally I’d had all I could take. I directed him, unwilling to leave, to the car and buckled him into his car seat. On the way home my eyes welled up with tears for the little boy he isn’t. Partly for me but mostly for him. It’s amazing how different I can feel about him and his autism based solely upon what benchmark I am using to measure his progress. At home, I think he’s doing fantastic. I question the need for so much therapy. I imagine him as a normal little school age boy doing everyday school age things. At clinic I see his progress. I see some of his deficits, but he’s talking! I see those who haven’t made as much progress, especially those who are older, and I am relieved that he has overcome so much this year. But then I go to the playground and see him against those he will truly be measured against, the only true benchmark of what is “typical” and I am crushed. Not only doesn’t he care about playing there the way 100% of the other children want to, but he is oblivious to their existence. A truly autonomous presence. The world is flying by and he is unaware. It is moments like this when I do question what gains we can make physically through biomed intervention. Surely it has its limitations. Perhaps his brain is just wired differently and all the effort in the world won’t change that. Moments like these deem days like today HARD DAYS. Yet today is no different than yesterday, which was a good day. But my perspective has shifted. I have caused today to be judged a BAD DAY. It’s me. Perhaps solely within my control. But how?

2/14/05

Valentine’s Day…and I’m ever so in love, with my baby boy. So much has happened over the last 2 months. Gains almost immeasurable! From the benefits of the MB12, to the lows of a massively bad diarrhea combination of Rotavirus and an Antibiotic (13 days of bottom trouble), and a definite casein reaction last week, Jack is in a new place developmentally. He is doing so well. He still does best engaging when it is just the two of us. I am his confidant. Today we celebrated Valentine’s Day with a picnic at the zoo. It was charming. In the 60s, breezy and clear, it was the perfect day to spend some time (mid Winter) outdoors! With a view of zebra and ostrich, we ate our lunch at a picnic table. Jack sat next to me, like a big kid, properly on the bench, with his hand resting on my arm, perhaps for comfort. A few times he exclaimed “Happy Valentine!” and I beamed. We looked like any other family at that moment. We walked around the zoo and played for a bit at the playground before we had to cut our outing short to adhere to our rigid schedule. Nap by 1:30 to be up by 4 to be ready for ABA (session 2 of the day) at 4:15. He has no idea how his days differ from his peers.

3/8/05

Birthday party, take 1. I cried as I placed him in his crib tonight. He was having such an awesome night. He had a birthday party with his Grandparents and he got it. He knew there were presents and he opened them eagerly. He saw his new viewmaster (which he calls a telescope) and peered in. He commented on Thomas and then Dora and said "It's SO beautiful!" as he looked at the pictures. Then they brought out a shiny new tricycle and he jumped up excitedly. He rode it for a few minutes and then was back to his "telescope". He enjoyed his "birthday cake" and had a great time. What a difference from a year ago. What a difference from Christmas, even. Yet, as I tucked him in to bed and said "Bye Bye. See you Sunday." my heart grew heavy. He has no idea that we are leaving and won't know why we aren't here. I'm sure all kids go through this at some point in toddlerhood, but it is painful nonetheless. Hopefully there won't be too many tough moments for the three of them until we return.

3/14/05

We all survived…and with flying colors! Mom & Dad were awesome parent replacements, stepping in without missing a beat. Jack did great. They noted that he seemed a little bit quieter and, perhaps, somber on the last day, but overall did wonderfully! There WAS the little issue of his all out panic attack in the tub, but other than that he has escaped unscathed! And Mommy fared well also. The first night there, I awoke with an emptiness in my heart. As though I had left something behind that I was responsible for. But once I began day 2, I realized that this trip was truly a gift from my parents. Their willingness to take on all of the responsibility of his care should not be received lightly. And from that point on I enjoyed myself to the fullest. Scott and I reconnected, I was pampered, and it was relaxing. I know that these moments will be few and far between for now, so I embraced my freedom. The last day there, Mom had Jack say a few words over the phone. He sounded so little! I had never heard him on the phone before. It was precious. And I missed him even more! The homecoming was sweet, and he was all smiles as we came into view at the airport. We were happy to be reunited!!! And Mom & Dad feel even closer to Jack than before, I suspect. The trip was awesome for us all.

3/18/05

Jack astounded us tonight. We went to Morri Faith’s birthday party at Pump It Up. I did not have great expectations for Jack’s participation there, since he has always adamantly refused to play on any blowup structure for as long as we have been around them: at 18 months at his school’s Fall Festival, this past Halloween at Julia Johnson’s birthday party and just a few weeks ago at playgroup, where a family had a small version of one in their den. But we went anyway, hoping for something good. Jack toured the facility privately before the party, and immediately started saying “No thank you!” as we coached him to try out the equipment. But then the kids came running in and he saw them sliding down the 15 foot slide. His eyes were as big as saucers! I asked him if he wanted to try it and he said “Yes!”. I still didn’t believe he’d do it, but I carried him up the slide. He LOVED it!!! Over the course of the next hour and 15 minutes, he conquered any previous fears of the blowup jumping equipment! By the night’s end, he had tackled the 15 foot slide ALONE!!!! He jumped in the enclosed jumper and rolled off the center mountain! He mastered the 4 ft. inflated rock wall in the obstacle course and was trying to accomplish the 10 ft wall! What an astonishing night! And of course, me without my camera (I thought there wouldn’t be anything to see!). Shame on me and hurray for Super Jack! He was awesome! We were the most proud parents…

3/28/05

Happy Easter! We just returned from our annual Easter trip to Meemaw’s. This year we actually “hid” eggs in the yard for Jack. He had a good time hunting them, thanks to Dora (and Grandma & Grandpa who sent the video) who explained the art of hunting eggs in “Dora’s Egg Hunt”. A current classic. Jack’s scripting is up again, so we are hearing all about the egg hunt with Dora. He did well traveling and really enjoyed having the DVD player in the car. He was disappointed today to see that his “computer” was gone when we went out to run errands.

He is suffering from diarrhea again. I’ve now concluded that he cannot tolerate Vancomycin. We are supposed to be on a 3x day every other day regimen. I have him on either 1x or 2x day every other day and he is still going 5-6 times per day. He’s eaten up with diaper rash and has taken to lying to me when asked if he has poopy pants, since the changing itself is miserable (I guess I don’t blame him). We are going to have to stop the Vancomycin and wait for our consult on 4/18.

I cannot believe we are 2 weeks away from transitioning to Metro. The heat is on. I am overwhelmed with the prospect of singlehandedly fighting the School District for his services. I’m not sure this advocate is helping as much as I need. Why in the world are we expected to represent ourselves against people who do this on a daily basis? If I were to show up in court wanting to defend myself, people would think I was a loon! But here it is expected. It is an absolute absurdity. I pray that our experience defies the norm. Perhaps I’ve built it up to be worse than it will be. I can only hope.

In a last ditch attempt to utilize TEIS’ services, we have a feeding evaluation at Easter Seals on Wednesday. I hope they can assist us in some way. Jack’s food selections are so narrow. It makes mealtime a little bit of a battle, even without any progress! He’s down to eating chicken nuggets or pb&J for meals and, of course, he wants fries. Other than that, or pancakes or waffles, he’ll eat fruit. That is about it. Chips and cookies too, but nothing else. No meat, no alternative bread, no vegetables…I could go on. We need some advice that will work for Jack’s combination of sensory issues and autism.

4/17/05

Ugh. Whew. CALGON!!! This would be one of the darker moments on the journey. We’re in the middle of a therapeutic-custody battle with Metro over Jack’s proposed IEP and services, they are now bringing in the “heavy” for round two (the Spec. Ed. Director) and Jack’s having a bit of a rough spell. It sometimes feels like it is just too much! I went out this afternoon to run a quick errand and found myself, on a beautiful Sunday afternoon, tempted with the notion of driving forever! Maybe not forever, but for a good long while to a destination unknown. What is that? Stress to the nth degree? I would actually choose to abandon my family and drive without purpose? This is not a good sign.

Note to self, in my next life, I’m going to set up a system by which all special needs families receive an Advocate, at no cost, to deal with the school system. This is Board of Ed vs. Joe Nobody and Joe isn’t feeling too good about the whole thing.

Jack is off. I can’t exactly put my finger on it, but it seems a bit yeasty. Screamy, less compliant, scripting to the point that he doesn’t always hear you speak, constantly playing trains, getting in movie jags…for 2 weeks straight it was only Thomas, now it is Baby Einstein (particularly the original, which features 15 different languages, which is getting put away tomorrow for good!) and an overall demeanor that is worse than what we saw a week or 10 days ago. That was bliss! He was so awesome! Much more typical. I did read tonight that kids who are getting better (typically through chelation) either look ADHD, Tourettes or OCD. And the author claimed that this behavior is transitional as they recover. Once recovered, these behaviors subside. IF this is true, and this is what’s happening, I’d classify him as mostly OCD with a little ADHD. Eloise is here today and she commented that he didn’t seem “right”. Said he seemed hyper and screamy. You know, it’s bad enough when it eats at you all day…but it is just plain over the top when other people, even with the best intentions, point it out.

His birthday was a success. He seemed to enjoy having the kids over, played well outside with them and even chose to sit outside with them over his standard place at the kitchen table! I’m glad I had the party. Funny that I had considered not doing it. Hindsight is an interesting perspective. I wonder what all of this will look like with hindsight glasses on?

4^th month chelation records have come in the mail. What a depressing moment! Nothing remarkable to share. Consult w/Scott Smith tomorrow. Perhaps he’ll shed some insight. I keep hanging my hat on the thought that Dr. McCandless’ granddaughter didn’t excrete until 9 months into the process. Gotta keep having hope. And he’s really a different kid now. Surely the DMPS is playing a role in that.

5/13/05

Medical attention week here on the Halbert Channel! Sunday afternoon Jack had a hard time waking from his nap. Tuesday morning we had the same super-sleepy disinterested little fellow, coupled with blue fingers and ashen lips. A pediatric visit and blood draw found nothing. A consult with his Autism doctor revealed DMPS the likely culprit. We are watching him like a hawk over the next few days to determine any changes in treatment… Then Thursday, in perhaps a peak moment of exploration or boredom, our sweet son shoved a dried black bean up his nose. Just like that…we were off to the ER. This was traumatic for Jack, things like wearing a fingertip pulse occ monitor, enduring a bp cuff on his lower leg…were just the beginning of a tough afternoon, as he was wrapped mummy-style in a sheet, placed on his back on a bed and “tortured” with a nasal speculum and otoscope. All to determine that the bean was no longer lodged in his nose. Yup! The bean turned up at home at the top of the garage stairs. I’m wondering if that will be the last time we make that trip!

Jack seemed to improve between that entry, 4/17 and a week or so ago. My guess is that the full two week course of Vancomycin and Sporonox were quite effective. However, a few days ago we went back to the every other day regimen, and now it is a tough time behaviorally for Jack again. Lots of screaming, crying with transition…today he protested vehemently as we turned into the Grocery parking lot, something we do often after school. Seems like he wants to be home…in his safe environment, playing with trains or with a favorite, predictable electronic toy/computer game. Poor baby. Wonder what he’s feeling. Mom & Dad bought him a new pair of sneakers a couple weeks back. He refused to wear them, crying “shoes OFF!” over and over. So, I took them back and bought a second pair, these a little more like the current pair. I put them on him this morning. He wore them for a few minutes until he noticed them. And then we were back to the new shoe protest all over again. It seems like it will be a miracle if he gets better on days like today. He’s pushing, kicking, hitting. I guess he sounds like a typical 3 yr old, but he’s anything but. Yesterday was the school picnic. He screamed to go to the car, had tremendous difficulty transitioning to the picnic scene. Finally agreed to eat ONLY if he could sit in my lap. Thirty minutes in to an hour and a half event, he was begging to go home. Not his best day.

On a positive note, I’m hearing “MOMMY!” often. Sometimes he’s calling me and sometimes he’s addressing me. It’s really great. Yesterday he said “Come with me, Mommy, please.” Previously he would label me, but not call me or address me by name. It sure sounds sweet. A diamond amongst the rough!