June Time Capsule

A Moment in Time...

JP

What is your favorite...

COLOR:

My favorite color is all the colors like Bob the Builder. What colors are those? They're a lot of colors. He builds and builds. Let's talk about another color. What color? Blue like Thomas. You like Blue? Thomas has blue. Yep. What else is blue? Um. Gordon. Yeah. Anything else you can think of? Lightning McQueen is red. Edward! What about Sally? Oh! Yep! Now let's talk about bedtime. What about bed time? About when I hear fireworks. You hear fireworks at bedtime? Yes, I can hear them outside. Do you like them.? Yes, I can hear them outside out my window. Would you like to stay up late and watch them outside? Yes. When I drive in my car I can often hear them. Yeah, that is how you and Mommy did it last year. But this year we could just sit in our backyard and watch them. Ha! I don't think so. That would be a huge job. I know! Why don't we watch them in the van when we drive along. Do we need to take popcorn again with us? Uh, okay. Maybe. In my bed I can watch fireworks. Well, I don't think you'll be able to see them out your window very well. Ha! I think I can do that! What color of fireworks is your favorite? My favorite is red, purple, yellow, red. Cool!

(We are seriously concerned about the fireworks. Unfortunately with the 4th on a Wednesday we got a full neighborhood display this last weekend and it seems to be continuing right through the holiday.)

BOOK :

My favorite book is Thomas and Friends Making Tracks to Great Destinations. Why is that book one of your favorites? What do you like about it? Gordon slides into the snow. Oh, that sounds cool. Do you suppose he gets stuck? Yeah. Edward pulls him out of the snow drift. Wow! Good thing for Edward. What a good helper! Gordon lives with his good friend Percy. So Gordon and Percy are good friends, huh? Yeah, they pull coaches with people. Who are some of JP's good friends? Thomas. Do you have any people friends? Hee Hee! I don't have any people friends, Mom! (Crack! That is my heart breaking!) Sure you do. But I don't, Mom. (nervous giggles...Hee Hee). What did Mom say friends are? (no response) Friends are people you play with. (hee Hee...not people.) Who do you play with JP? Bob the builder. No, I mean real children that you play with? Not children! Just mans. Do you have man friends? Yeah! Who? Bob the builder. Do you have friends that are not on TV? Hee Hee. I think there is mans on TV, Mom. Are there children in your summer school or in speech that you play with? No, Mom! Do you play with Jonathon? Yeah. But I know! I got an idea. What is that? Let's look at something. I'll be right here. Are you going to get something. Yeah. I found the soccer ball. Are there children you played soccer with. Yeah! Who? The teacher teaches me how to play soccer. Was Jacob on your team. Yeah. Is Jacob your friend? Yeah. He likes trains too, doesn't he? Yeah. Is Graham on your soccer team. (fake yawn) Yeah, but I am yawning. What does that mean? That means I am getting sleepy. (It is just before bedtime) Hum, I think you have to take a bath first. Hee Hee! No, Mom. We can't take a bath!

(Sadness. Pure sadness engulfs me. Will he ever understand this friends thing? Kindergarten is going to be so rough!)

MOVIE:

My favorite movie is my soccer team. You like the movie Mommy made of your soccer season! Yes, Mommy! What is your favorite thing about that movie? Uh, me playing soccer.

FOOD:

My favorite food is cake. You know, I don't really believe you because you don't actually eat cake. Can you tell me a food that you like to eat. I think cake is food that we eat. Did you eat all of your cake at Kyli's birthday party? Yes. I did it in the back morning. I think you ate the frosting but not the cake. You gave the rest of it to Mommy to eat. Would you maybe say that your favorite food is grapes? Hee Hee. Yes, Mom! Maybe your favorite food would be peaches? Yes, Mom! Maybe your favorite food would be zingers. Yes, Mom! So tell me what you would you say your favorite food is? APPLES! (Now that is an answer I will believe)

DRINK:

My favorite drink is Strawberry limeade! Yeah, I would agree with that. Is there a black drink that you like? Yes, Coke and Pepsi. Do you like Coke/Pepsi more or Strawberry limeade best? Strawberry limeade.

TOY:

My favorite toy is Thomas and his friends. Thomas and Annie and Clarabel take children to the seaside.


LETTER:

My favorite letter is A. Why A? Because it says "Ah" as in apple. What else does "A" spell? It spells favorite. Really? Look at the word on the computer screen. Right there. See it. What letter does favorite start with? F. Does A spell airplane? Yes! Does A spell Penguin? Hee No Mom! What is that first letter in penguin? P!


NUMBER:

My favorite number is 1. Why 1? Because we could count. Let's talk about more numbers. What number do you want to talk about? (counts to 10) Can you count backwards? (counts backwards) Good job counting!

SONG:

My favorite song is about Thomas and Friends Making Tracks to Great Destinations. I also like sing along songs about the stations.

My additions:

JP has really had another great month. I look at him and see him growing up so fast! He has adjusted to our new schedule of chaos very well. He has transitioned to summer school without a fuss. I don't think he is performing at the level he was with his last teacher but that will take time. Of course, this teacher is only for summer school. Then we get to learn a new teacher when school starts. He has to get comfortable with a new school, new teachers and new kids! It is going to take awhile! But I have been amazed at how he has just gone with the flow.

The past few weeks have been a lot better about video watching. He is currently in full Thomas mode. He has been watching one library Thomas video but he spends most of his time putting tracks together and scripting Thomas stories. Of course, he has probably 100 trains but the ones he keeps asking for are the ones that were recalled. I pulled them out once but he found them before I got them mailed off. But they are hitting the mailbox this week! He did shock me this week by asking for an Annie and Clarabel. I told him that they had to be here somewhere. He repeated himself and told me we don't have them and he needs them from the store. He even pulled out one of the thomas flyers that comes with the trains when you buy them. He keeps these and reads them. He showed me Annie and Clarabel on the flyer. I thought for sure that we would already have these trains because as they are vital Thomas characters but DWAM told me that we do not actually own them. I'm not sure how that oversight occurred but it was cool that JP was right and did such a good job getting his point across to his dense Mommy!

I guess most of our transport time to therapies is spent watching videos. Mostly we watch a couple Baby Pro videos about sports and swimming. JP is actually showing an interest in hitting the baseball and he finally gets that you run to the base. We've been seeing more initiative with baseball, soccer and basketball. He also loves the swimming video but we still can't get our head under the water.

He is still a big Bob the Builder fan but not so much about the videos. He listens to his CD at bedtime while he reads along in the book. He also becomes Pilcher, the cat, whenever he gets bored. He will slink up next to you and cuddle (like a cat) and meow the sweetest little meow. It is cute but gets old fast! On the good side is if you ask Pilcher a yes or no question JP will actually nod his head yes or no while he meows. This is huge because he never guestures with head nods. We've been targeting this for a long time!

The only dark side is merely worth mentioning. JP is getting more verbal about scolding other children. He does this a lot with T but I have witnessed it with other kids a few times lately. We will continue to work on appropriate ways to talk to other children. I have also seen him push T a few times and even swing his arm around like he was going to clock him. I don't know if this has been learned in our few short weeks at school but it isn't acceptable. And it will likely get his butt kicked at school! So we are starting to work more on "anger management".

Another quirk from out of no where is his use of the word, "Mom". It seems to be scripted how he uses it but it always takes my breath away. It feels weird to have my baby calling me Mom rather than Mommy. I suppose this is inevitable as he grows up. I actually asked DWAM a few weeks ago at what age he thought we should shape JP's language to Mom and Dad rather than Mommy and Daddy. I thought we would have to target it. So I guess this is cool. Still bittersweet!

Bed time books:

Baby T

FOOD: cottage cheese, fruit snacks, cheese, chicken fingers, ramen noodles, macaroni and cheese, Hamburger Helper Cheesy Beef Taco, pickles, popcorn, potato chips. He is getting more picky. In fact the last week he hasn't eaten much. He is getting all four molars and I think they are slowing him down.

DRINK: Juice.

MOVIES: #1 Any Wiggles, #2 Any Baby Einstein video.

TOYS:

-He is better with the climbing. He still can and does but he isn't constantly seeking something to climb on.
-The real phone...not interested in the fake kiddie phones. (Even says hello...DaDa blah blah blah)
-Loves the shape sorter.
-Fascinated by paper and any sort of writing utensil
-Likes to climb up the rope ladder but has decided he doesn't really care for the slide. I think it gets to hot during the day and he doesn't want to sit on it.
-Is a natural with the baseball tee in the backyard. Any ball works--football, basketball, baseball...shoe.
-Loves to drop the basketball through the hoop.
-Loves to jump on the trampoline with JP. Won't do it without JP.
-Loves swimming in our backyard pool.
-Love anything to do with the bathtub!
-Is fascinated by the toilet. Will put his potty seat on the toilet and climb on top. Has been known to take toilet paper and simulate a wipe. Just this week he didn't bother to rip of the toilet paper but rather wiped with the entire roll and then threw it in the toilet.

T will push the buttons and dance to the music. He is not really using it to hear the animal sounds yet.


T loves to scribble and draw. Any pencil or paper found is fair game. He loves to use the Doodle Pro but tends to use the shapes to make designs.

BOOKS:
T loves books! Particularly stuck on a book about baby Grover going potty.


WORDS/ACTIONS:
(against my better judgment I will include these...I'll try not to over analyze)

Have heard:
Daddy, BaBa (bottle), ball, I did it!, Bye Bye(with a finger wiggle), baby, straw, bath, puppy/dog, all done, Mama, head, backpack, cup, peek a boo, noisy/sloppy kisses, blows noisy kisses, touches head during "monkey jumping on the bed", wags finger no during the "no jumping on the bed" part, bike, banana, 1..2.."3", ready, set "go", JP, T, fish, cheese, star, moon, train.

Commonly used:
Car, cow, moo, straw, ball, duck, Daddy, potty, bye bye, bath, book, outside, NoNoNoNo! More, more chips (two words!!!) .

Can point to eyes, nose, mouth, ears, hair, head
If you say bath he will practically run upstairs and climb in.
If you say juice or drink he will head to the refrigerator.
If you say snack he will had to the pantry.
If you say go (or if he wants to go) he will get shoes and try to put them on.
Will give you his feet if you have his socks and shoes to put on. (unless he is in the mood to run away). May even try to put socks and shoes on himself.
Will bring food from the pantry to Mom. Usually goldfish or fruit snacks.
Will run from you (with the naughty item) when you tell him no.
When you upset him he will start babbling at you with lots of inflection. I don't think he is using nice words and I dread the day I figure out what he is saying.

Shamefully I will include these...I hope they are nothing but collective moments of paranoia but I need to document them for reference.

Fear of the parachute at YMCA class (now will sit on it. Has been under it-under protest)
Fear of the tunnels and forts at the YMCA class. I put him inside them and he just stood there screaming. (now will climb through the little tunnel at home. Did finally do one tunnel at Y)
Fear of the plastic bubble wrap all the other kids were jumping on at the YMCA class
Huge tears during JP's OT when he tried the "flying apparatus". It is very noisy.
Fear of the trampoline in our backyard. (NOW HE LOVES THE TRAMPOLINE!!!)
Won't look in the sky when I point at an airplane. They are very noisy yet he is oblivious. (still oblivious...it is the weirdest thing! These planes are LOUD and yet he still won't look up into the sky.) - Finally got his attention with one. Now he will look up and point but doesn't say anything.
Seems really bashful around other people. (Yet will interact and play along side other kids) Sometimes if an adult talks to him he will shun them and burrow his head into Mommy.

A disclaimer for the local folk

DWAM would like me to include a disclaimer. He is uncomfortable with my play on the title of God. I can't really bring myself to change all of my postings. Besides I can't refer to our Special Education Coordinator by name and it is too much work to type out Special Education Coordinator every time I want to talk about the Special Education Coordinator. See what I mean! Besides it took me about 3 minutes to type that sentence. For some reason I do typo after typo when making the words "Special Education Coordinator". So I have to create a pseudonym for the Special Education Coordinator. I do not intend this as a blatant insult to the Special Education Coordinator. I would assume that if the Special Education Coordinator read my blog it might make her upset. However, she would have to realize that this is my personal outlet for therapy. I am blogging to my fellow autism parents looking for advice and support. This isn't really about the Special Education Coordinator. This is about a parent trying to navigate the special education hierarchy. Yes, the Special Education Coordinator is a critical player in this hierarchy but I understand that she has a job to do. I've worked Corporate America. This is business. She has limited funds and a growing list of children that need supports. I really don't want to risk making this feel like a personal attack on her. Personally, I feel that the worst thing we could do is mix personal feelings with business (and then religion on top of that)!

In fact, I really got along well with the Early Intervention Special Education Coordinator. Actually, I am very thankful to her for getting JP in the special placement he had this past year. She also really came through for us in getting as much support as we did at our initial IEP meeting about next year. I don't really know the Elementary Special Education Coordinator yet. Hopefully, we will get to be on friendly terms throughout the years. My only personal knowledge of her is from our IEP and now from the lack of response to my letter. I would love to come back to report to my blogger friends that she is really a warm and fuzzy person. She may very well be. But this discussion is not personal...it is business.

And she really is the person who ultimately makes this decision. This decision greatly impacts my son's life. She is a powerful being--hence the God comparison. I don't mean to imply that she thinks of herself as a God. Now, if anyone local should read this, please know that this title is used to illustrate her authority rather than her behavior. And for the love of God (the real God) please don't share my blog with her.

I have shared our blog with a few of our former teachers and local families. I like knowing that some of JP's local fans are able to keep up with him. There are some really special people who have entered our lives. I like that they can visit our site and catch up on JP's developments. However, I do regret that at times this makes me feel censored. I prey that my play on words (which I would agree could come across as a bit disrespectful) will not get in the way of my son getting the services he deserves! I guess I am making a leap of faith here but I trust in these school friends. Lord help me!**

A crisis of faith

**PLEASE READ THE FOLLOWING DISCLAIMER BEFORE PROCEEDING TO THE FOLLOWING PARAGRAPHS**

Almost 3 weeks ago I sent a letter to the special education God.

She still hasn't replied. That first week was our second week of summer so I thought maybe it was her sabbatical. I didn't feel the need to pressure her. That second week was the first days of summer school. I thought surely she'd be back in her office and a response was eminent. This was the third week. My faith is diminishing. It is time to gather my flock for our journey of enlightenment.

I talked to our summer school teacher. She is a 17 year special education veteran who is now teaching general education class of 1st graders. (If you are perplexed why JP's teacher is a 1st grade teacher you can read my Decisions and more decisions chapter of our saga.) Unfortunately, I must admit I feel like I do not currently have a handle on what JP's level of participation is in this classroom. I haven't asked to observe the class. Perhaps I should. However, his teacher did say that the classroom aid (they were assigned for JP) is pretty much by his side most of the time. This aid is only there for the 1 1/2 hours of the 2 1/2 hour summer school schedule. However, I believe that the school itself is funding her to be there the extra our. I also have to factor in that these are incoming first graders and the material is likely pretty foreign to JP. Yes, he is academically advance for an incoming kindergartener. Yes, he knows his numbers, letters, is reading a few words. But the long A sound. Nope, he isn't there yet. He is keeping up but he is not doing so without adult assistance.

Anyway, I am getting off on a tangent. I told his summer school teacher that I was looking for information on how JP is succeeding (or not) in the classroom. I needed to know so I would know what to say in our discussion with God about a aide for next year. Her response was, "I'll probably take some heat for this but I did send an email to the principal and tell her that he needs a full time aid in the classroom." Thank you! It appears we have another believer in our midst.

So if you are keeping score with us...we are now at 13 to 1. At IEP time it was 10-1 but we now have the 1st grade summer school teacher (our future 1st grade teacher), a resource teacher who is partnering in our summer school class and the para who is assigned specific to JP for a part of his day. Still that 1 is a pretty powerful force.

I commented that I would be following up with God since I hadn't received a response. The teacher did tell me that God visited the classroom during the first day of summer school. (Hee! Hee! Who says God isn't allowed in our children's schools!) So I know that we are on her radar. Nevertheless I have not heard from her. It is time for me to up it a notch. I need a response and they now have their own live data from JP in their classroom.

Perhaps she is confused by my analogy. I am not in prayer here. This is a two way discussion. She may control the funding for the school district but she still has to adhere to the 11 commandments. Did you know there was an 11th Commandment? Free and Appropriate Education!

A fun day out with my boys

Lots of interesting quirks today.

The boys and I went to the zoo. JP and I used to go a lot. We have a season pass so we can just go walk for a couple hours and not feel like we have to "recover the outrageous cost of admission". We went for the exercise and the view. But last year was different. It was just too much to keep track of JP. T now got to use the stroller and JP has had to learn to be a big boy and walk. We had lots of new issues ranging from sensory to just plain wildness. DWAM took off a couple times so that we could go as a family but it still wasn't the same.

Well, here it is late June and we still haven't been there. Our schedule is crazy as JP has activities all day Tuesday and Thursday and pretty much every morning. Now, we do have 3 afternoons open but I am not going to walk through the zoo when it is 100 degrees outside and outrageously humid.

So today after OT I decided we would just wing it. OT was over at 10am and we could still get in a couple hours before the afternoon scorching began. I really must say that we had a very nice time. I enjoyed both boys and it was a relaxing and exciting event for all of us!

JP is not really allowed to "walk" much. I still plop him in the shopping cart most of the time just so he can't get away! We work on it but before today I would have said that we have a lot more work to do. However, today he did amazing keeping up with T and I. Now don't get me wrong, he still would just keep walking and not even notice if T and I were nearby. But he did listen when I told him to stop and even came back! He was actually very well behaved. It is these changes in his behavior that I am thinking about most tonight.

Usually we travel to zoo in the same format. Jungle...aquarium... gorillas...carousel... home. Today, however, he chose for us to go through the desert first. Personally, I think this exhibit is kind of boring but he has been scripting a desert storyline lately (I think it is Thomas but I don't know for sure yet) so he was very interested to travel through the desert. Since we were already at that part of the zoo we proceeded to go... desert... gorillas... carousel... aquarium... jungle. He was totally okay with the changed pattern! Wow! Now I know that he chose the starting point. But when we finished the desert he wanted to go to the jungle. He didn't get upset with my rational about switching it up and doing the gorillas next!

We did have one meltdown. I don't need a behavioral assessment to identify this one--it was pure anxiety. We were walking through the desert talking about the orange sand and the prickly cactus plants when our path led into a cavern. This is how they transform the display into a different type of desert scene. Well, I made the mistake of saying, "Oh cool JP! We get to go through a cave!". He dropped down shrieking and practically tripped the gentleman walking behind us. He was hysterical BUT after only a few seconds he verbalized his fear! He said, "NO BEARS!". That is when I realized that in JP's world, bears live in caves. I assured him that there were not bears in the cave and he picked himself up of the ground and took my hand. (Thank God they didn't have any bears in cages inside the cave!!!!) Together we timidly pushed T in his stroller through the caves. Here is the funny part...the caves didn't have bears but they had displays of all kinds of yucky critters... snakes, spiders, bats. These creepy critters didn't bother JP. (They give me the creeps!) It was the fear that he was going to run into one of those pesky bears! (Even though he absolutely loves Pooh bear!)

Another anxiety road block was moved a little bit today. We also got to actually enter the carousel line so we could watch the ride up close! I guess I should state for the record that JP is terrified of moving rides. We have never succeeded at a carnival or amusement park ride. He won't even sit in the Ferrari car at Walmart (even if I swear I won't put a quarter in it). Last year we spent a lot of time watching the other children enjoy the carousel. Today we actually entered the ride area and watched at the gate. He proceeded to tell me that "in August when I ride the carousel I will ride the horse like Bob the Builder does in Build to be Wild". August seems to be our "far off date when I have to be a big boy" because that is when Kindergarten starts. I don't think he realizes that August is just around the corner.

I should also state that T's favorite was the aquarium. (Unfortunately, much of the zoo isn't really visible in a stroller.) JP likes the aquarium too but he was ready to move on after a few minutes. But T was still loving the sights. I was thrilled that I was able to explain to JP how much T was enjoying looking and shrieking "fish" every time one of the sharks or manta rays swam over our heads. JP seemed to understand that since T liked it we needed to indulge him a little longer. This made Mom feel better about her concerns from yesterday's post.



____________

As a side note, this is probably not something JP will want to read about when he gets older but I can't help but preserve the scene. We had just gotten home. T had fallen asleep in the van. JP asked if he could go play with his train downstairs. I told him he could but he needed to go potty first. I explained that I had to take T upstairs and then I would come downstairs. So I take T up and JP heads to the bathroom.

When I come out of T's bedroom JP is walking down the hall naked from the waist down. (He has no modesty) I asked him why he was changing underwear? Did he have an accident? This has been an issue lately because he isn't doing a very good job cleaning himself up after a bowel movement. I almost always catch him after the fact and have to make him change his underwear. Nope, no accident he assures me. "Did you go potty in your pants?" I ask. "No, I farted" he said. I wasn't sure how to respond to that and the underwear did appear clean when I inspected them...

The life of a little brother

In my previous post, I mentioned that I had two half sisters. But they are so much older than me that I still pretty much grew up as an only child. They lived with us off and on but we never had a real "sibling" relationship. I always longed for that close sisterly love. Of course, I had that "Leave it to Beaver" kind of expectation for family. I have sense learned that no one can live up to that.

Still, I look at my boys and I hope and dream that they will share a special bond. I understand that boys are different than girls and my sisterhood fantasy is not really applicable here. But I want them to know that they are blood and that no matter what life deals them they can always count on their family. Of course this dream is even more poignant due to JP's disability and what it means for all of our futures.

I can't help but reflect on T and what this means to him. He has spent his entire life tagging along to JP's therapies. We go to OT and watch JP play on all the swings and do all kinds of fun activities. Now that T is mobile (in other words, can't be contained) he sometimes gets to sit in the ball pit or swing in the baby swing. But that is not nearly as exciting as what brother gets to do. We go to speech preschool and T is cooped up in a small room with 3-4 adults who are trying to watch their children through a one way mirror. He has to be pretty quiet. Between juggling both boys I just can't take very many toy with us. Sometimes T gets to come watch gymnastics. JP gets to run and jump and spin around on his head. T just giggles as he watches but gets frustrated when he can't seem to get the door open so he can go try it. No matter how you look at it, T has spent his entire 20 months on this earth watching his big brother.

Let's face it, life is about JP's services. But these services have taught JP to talk and they are teaching him to socialize and deal with the sensory obstacles in life. These services are for the betterment of JP, T, DWAM and me. These services are helping JP learn how to be a brother and hopefully improving his future relationship with T. I really believe that the chaos right now is so that we can have a better quality of life later. Truthfully, next year will be the start of "later". JP will be in school and won't have the time to be shuttled from therapy to therapy. Life will change for all of us in August.

During this last school year, T and I did a Mommy and me class at the YMCA. He did like the class but it is not held during the summer. Even if it was, we couldn't do it. JP would be with us and I am not ready to drop him off for the Y Kid Care. I've seen the set up. 60 kids running around with 1-2 teenagers moping behind them. Nope. Not going to do it. T and I will start back in the class when it returns in the fall.

Yesterday we had a play date with another spectrum friend. He is 6. His 3 year old little brother came also. Our guests and JP were jumping on the trampoline. T wanted to join them. I do let him get on with his brother usually but this was a bit crazy. Our wild friends kept bouncing off each other and I knew it wasn't safe for T. (I'm not sure it was safe for the others!) But all poor little T knew was that I wouldn't lift him up on the trampoline where all the other big guys were giggling and having a blast. Life was not fair!

Yesterday while our friends were visiting we got out our Geotrack train. This train gets put away for a few months and then when it comes out it is like a brand new train. We set it up in the basement so that we could leave it up for a few days. The basement tends to have "little choke hazards" so we limited T's time down there. Well, since setting up the train, JP has been living down there. T and I joined him for some train time this afternoon. T was really really excited to play with the train tracks. And I must say that he actually does a pretty good job with it. However, the bridge is pretty wobbly and it always falls down--especially for an inexperienced conductor like T. This destruction drives JP crazy!

After about 15 minutes, JP started yelling, "No T. You must go upstairs." It broke my heart. T just wanted to play with his big brother. His big brother is his idol. Whatever JP does, T wants to do. I explained to JP that T is just a little guy and he is still learning how to play trains. I told him that it is our job (JP's and mine) to teach T how to play. We have to teach him how to share his toys and play with other kids. T knocked the bridge over again. I showed JP how T tried to put it back together but he didn't know how. I explained that we needed to use our words and then show him how. "Can you help me do that", I asked. JP responded with, "Yes, now you must take T upstairs".

I was torn. JP did awesome sharing all his toys and trains with our friends yesterday. Even this prized Geotrack train. The basement really is his sanctuary. But he also needs to learn that T has feelings and wants to play with his big brother. I wanted to honor JP's words and his wishes. He doesn't often articulate them so well. But I don't want T to feel like his wishes don't matter.

Ugh. I know this is just the tip of the iceberg. It is only going to get harder to keep life fair. Okay, I know that life isn't fair. But we are a family. And we owe it to both boys to make sure that they feel loved and respected. As T is getting older I am starting to wonder if we are already being unfair to him. On paper it could seem that way.

Truthfully, he is a very happy go lucky little man. He is such a little trooper. He clamors to get his shoes when I say it is time to go. He rushes to the door to wiggle the door handle. In fact, I would swear that he gets bored when we stay at home on the weekends. He actually said, "Where JP" to his dad when he woke up from a nap and JP wasn't around. He idolizes his big brother. He expects activity but I don't think he realizes that he isn't the "active" one.

I know that he isn't even 2 yet and that their relationship has barely even begun. But I vow that T is going to continue loving his big brother as he grows up. We will find a way to make sure that we don't allow any wedge to come between them. I know that the reality is that JP will likely require more support from us than T will. I know that the reality is that many siblings resent this "favoritism". I am going to do everything in my power to make sure that T doesn't grow up to resent JP's disability. But that really is a tall order. Hell, there are days that I resent autism and what is brings to our lives. How can I expect T not to feel that way sometimes? But I am committed to making this happen. I just can't help but struggle right now wondering if I need to be laying the ground work already.

I think that August will bring about a lot of changes for our family. JP will be in school all day and that will open up a lot of time for T. We will get back into our Mommy and me class and maybe we will find another activity for him. He needs a special event just for him. Something that is all about T! As nervous as I am for JP to be at school, I am excited to think about what these changes will mean for T. Finally, he will have some special time where he can be the cruise director and be the one to keep us busy!

8 things about MWAM

My cohort, Laura, over at This Is What I Do tagged me to a tell 8 things about myself. Ugh. I don't like these things. I can never think of anything interesting.

1. My college internship was at a feedlot. Exciting, huh? Before you get the image of me riding horseback and wearing chaps I should tell you that my degree was in accounting. I worked in the trailer house/business office. I paid the bills and helped keep the "medical" records for over 50,000 of our four legged friends. Yes, that was enlightening. I got to keep track of what shots each cows received and how many grew sick. (Jeez, that statement now means more to me than it did back then!) Truthfully I am surprised that I can still eat meat! Did you know that a cow can eat itself to death! Thank God, I'm not a cow.

2. I played competitive softball all through high school. I loved the competition. Sports really do teach us a lot about people and life. Our rival team started rumors that our softball coach was a lesbian (they used a less politically correct term). Our coach was a single woman who had played collegiate softball. I felt that they were just being nasty and perpetuating the stereotype. I was angry that a silly game would give them the right to pass judgment and talk trash about someone else. After graduation, one of my teammates moved to Texas with our coach. To tell the truth, I pretty much knew about my coach. I was blown away by my teammate. To each his own (although the whole coach/student thing kind of bothers me still) . Last I heard they were still together.

3. Like Laura at This is What I Do, I was also on my elementary school safety patrol. This was rather hysterical. You see I am very short. I remember being made fun of during my 6th grade year because there were (several) 1st graders that were taller than me. I am now 5'2". I swear I am!

4. I had C-sections with both of my boys. JP was 8lbs 12 oz and T was 9lbs. As I mentioned before I am 5'3". Those boys were not going anywhere. I am convinced that if I had to birth them a century ago they would have never came out. Then I would be 5'4" across as well as 5'5" tall.

5. While in college my father tried to grill himself. It is a long story. Let's just say that he "fell asleep" leaning up against one of those old fashioned heaters in his house. It was winter and he had had to walk home in the snow. He leaned up against the heater to warm up and "fell asleep". When he woke up he got in the shower to "cool off" and discovered his skin was still stuck to the heater. He spent several weeks in a burn unit. He is doing fine now but his back is now made of pig skin.

6. I have two half sisters. They are 10 and 12 years older than me. We share the same dad. I have always longed to share a sisterhood with them. J, the one 10 years older, and I are doing pretty well keeping each other in our lives. She lives in my hometown. D, the one 12 years older is another story. She and I went 8 years without talking until she developed cancer. I reached out to her. Fortunately, she is now better. About 3 years ago she just dropped off of the face of the earth again. We didn't have a falling out. She just never returned my communications. I continue to send her a Christmas card. She has never met T. She has never acknowledged his birth or JP's diagnosis. She lives a couple miles away from me here in the big city.

7. I have a boys name. Well, I have met other girls with my name but there are very few of us. In fact, when I was getting my transcripts together for college applications I discovered that my school district (where I had attended since Kindergarten) had my gender filled out as "male". Of course, the transcripts showed "Girls PE".

8. My husband and I have interchangeable names. His is a name that is acceptable for either males or females. However when paired with my name the standard assumption is that DWAM is the she and I am the he. This makes it very easy when we answer the phone. We can pick out the telemarketers by the ones that assume the wrong name.

Well, I'm not sure who or how many I am supposed to tag. I know it breaks the link and ruins the game but I'm just going to leave it as an open invitation. Anyone who feels up to the challenge should consider themselves tagged!

Happily ever after

Nine years. That is how long ago we signed on the dotted line and promised "for better or for worse, for richer or for poorer, in sickness and in health". We agreed to live happily ever after--together.

Some moments have been better than others. Hmm. Richer, well, we are definitely in the poorer stage of life. I guess in the grand scheme of things (Autism aside) we are "in health".

And what a ride it has been. So much has happened during our life together. Let's see. I guess I should start at the beginning. Well, the first milestone during our relationship was Dad without a Manual (hereafter known as DWAM) getting his driver's license. Yep, he turned 16 the summer we met. I was the older and wiser woman. I was already 16 1/2. Most of those years are fuzzy memories. I remember talking on the phone a lot. I talked. He mumbled. We went to different schools so we had a full day of experiences to share. Or atleast I did. DWAM has never been much of a talker. Fortunately for us, I am a fantastic talker! Oh, to be teenagers again!

This is a picture of us during the summer of 1990. We'd been together for about 3 months.
Damn we look so young!

I guess I can skip forward to high school graduation. Then we can just buzz right through college graduation. We both attended the same university and moved to the big city mere weeks after graduating. We rented an apartment together. This was a big deal! This was the first official "living together"! That just sounds so sad given that we had been together for 7 years! I guess you can say we took it slow...

DWAM landed a real job right away. I continued to search and settle for miserable positions. I won't bore you with my resume but I will always be touched by the endless encouragement DWAM gave me during these times. I was so frustrated that my college degree didn't seem to count. Perhaps a degree in Business Administration was not the way to go. My area of emphasis was Accounting but all I could find were basic bookkeeping positions for an hourly wage. Oh well. I finally squeezed myself into a lower level management role and found a niche automating the accounting functions. This led to me go back to get a master's degree in computer information systems. Through it all DWAM encouraged me and gave me the confidence to keep pushing forward. I've never been a confident person but DWAM is my rock. We both always seem to know how to lift up the other person when they need it.

So in 1998 we tied the knot after dating 8 whole years! We were 24 years old! We were still kids! Well, I suppose "kids" is a bit of an exaggeration. But looking back I can't help but sigh and reflect on our innocence. I look in those eyes and I want to tell us to slow down and enjoy the silence. Life is never going to be that simple again.

Our first true moment of despair came a few years later when we lost my father in law to cancer. He was a super guy and it truly took us by surprise. He was a specimen of health. One day he had a nasty chest cold then he was diagnosed with stage 3B lung cancer. They gave him 6 months. He was so amazing as he faced his final days. I wish we were all as at peace with his death as he was. Perhaps we are still not...

(As a side note, he was a Vietnam vet. He did time in the jungles where we sprayed Agent Orange. Interestingly, after his death we have found that many of his comrades have experienced the same illness. Most are blindsided by the advanced stage lung cancer almost 30 years after their service. Most die within 6 months.)

If that was our low point. Our pregnancy with JP was the high point. I wasn't in love with my job and considered it time filler until I finished my masters so we decided that I would just quit work and stay home. The plan was that once I finished my degree I would go back to work.

In December of 2001 JP was born. Life was perfect. He was perfect! Parenthood was exhausting but so much fun! Every day was a new experience. Our plan for happily ever after was going full steam ahead.

Then in the summer of 2004 our beautiful little prince started having some serious sensory issues and social issues that made him stand out from his peers. I won't rehash the story. You've been reading about it for months now. Needless to say, our plan required some readjustments.

The fall of 2004 brought autism into our lives. I finished my masters degree in the spring of 2005 and began working for my new full time employer--JP. Of course this altered our "financial plan". We had a mortgage payment and credit card debts that we had assumed on the belief that I'd be back at work in a few years. Oops! Here comes the "for richer or poorer" part of our happy story! And yeah, autism is only adding to that financial strain...

Fall of 2005 brings another huge joy to our lives. Baby T arrives and steals our hearts. Our family is now complete. We now seem to have the blueprint for the "rest of our lives".

Through it all, DWAM and I have somehow kept it all in perspective. Finances are a concern. Our oldest child's future is a concern. Actually both of our boy's futures are a concern. One has autism. So far, the other is developing on cue. We are anxious and always worried but we are doing it together. When I get overwhelmed, DWAM reminds me that we are fine. We will be fine. No matter what life brings us. Some days I believe him. Other days I need him to remind me again. Yet other days, I am there to remind him.

Together we make a great team. I can't imagine life any other way. Our boys are gifts. They bring us joy. We are a family through thick and thin. We face adversity together and we relish the joys together. Together as a team, the four of us will live happily ever after.

We may have aged a lot the last 9 years (17 years) but I think we are still looking good! Don't you?

Dear God

As I mentioned before we did not really get 100% assistence for JP in his inclusion Kindergarten classroom. I am getting more and more nervous about this as time passes. I already made a request of the principal to reconsider. She said that she agrees with my concerns and has already put in a request. But that request was denied. So I guess my next step is to approach the Special Education Coordinator. If you recall from my IEP post this is the only person in our meeting that I felt was not on our side.

So I drafted up a letter. Worst case scenario I have no doubt that we will get someone in there when we have our meeting 4 weeks after the start of school. But my concern is that this person they hire will not be the best candidate. They will be the only candidate that wasn't hired at the start of school. I don't want us to have to settle for a warm body. I want them to find someone who wants to work in my son's classroom. By waiting they set this up to be a bad fit.

Anyway, here is my letter. It got way to long but those of you who read my blogs know that I can drone on and on and on...

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**PLEASE READ THE FOLLOWING DISCLAIMER BEFORE PROCEEDING TO THE FOLLOWING PARAGRAPHS**

Dear (Special Education God),

First of all I would like to let you know that I felt that our IEP/Placement meeting went well. Everyone really seemed to be focused on JP’s needs and getting the right goals in place. It was a little bittersweet to have to say goodbye to our preschool teachers. They have been wonderful with JP! However, the pain has been lessened by the warm reception we have received from the staff at our elementary school. Everyone has been very welcoming to us and they all seem committed to making JP’s year at Kindergarten a success.

However, I am still uneasy about our level of supports in place for JP. Based on our discussion during the IEP, most of the support was to be applied at group times. This is definitely a critical time for JP. He must “learn how to learn” in that group setting. However, various events recently have made me worry about the other 12 hours of his week. I still completely agree that we should meet a few weeks into the school year to discuss if we have the right supports in place. These supports will always be a work in process because our goal is to fade them back as soon as possible. However, I don’t think 4 weeks into the school year will be a realistic point to start withdrawing. I believe Mrs. A and JP will need a paraprofessional in the classroom full time.

JP has made wonderful gains this past year in his preschool class. I did feel that it was a risky move putting him in a larger class without specific one on one support. However, having a classroom paraprofessional seemed to provide the right level of support to meet his needs. I fear that putting JP in a situation where he doesn't fully grasp what is expected of him and in an even larger class with even more sensory/social chaos might cause regressions. I also worry about him developing inappropriate coping behaviors that will make it difficult to keep him in the mainstream.

Thanks to his fine teachers this past year, JP is doing a fairly good job of staying with the group and not acting out. I worry that with some of his peers not having experience in a classroom there will be a bit of chaos those first few weeks. All it will take is one child to be hyperactive and running around the room, and JP will be drawn to that activity. I have seen this happen in our gymnastics class. However, we have found that with a subtle reminder from an adult, JP is able to stay put and focused. Mrs. A will have 20+ kids to tend to and will not be able to be a constant chaperone for JP. I really feel that we need to be proactive on keeping his behavior in check. It will be easier to shape his behaviors from the beginning than have to correct them after he experiences problems. As you know, autistic children can be very rigid. Although JP is doing much better in the aspect, I can’t state enough how important it is that we be proactive on this!

As excited as I have been with JP's growth and performance, I really don't feel that he is ready to navigate the Kindergarten environment alone. The following situation at Kindergarten Roundup illustrates my concern:

JP and another little boy were playing. As you know, most of the children think they are at roundup to make new friends. This other little boy asked JP if he wanted to be his “best friend”. According to Mrs. M, “you could see the wheels turning and JP knew he had to say something. But he didn’t know what. So he yelled “Boo!” When it didn’t get the reaction he expected, he said Boo again.”

Of course the other little boy was discouraged and moved on. JP would have lost a huge opportunity had Mrs. M and Mrs. T not witnessed the event. (Mrs. M and Mrs. T were only there for Kindergarten Roundup. The will not typically be in the classroom. Mrs. M was there specifically to shadow JP on this day of orientation!) Fortunately they were able to coordinate a second attempt between the children. They explained to the other little boy that JP was learning how to make friends too and that maybe they could try again. They brought the boys together and explained to JP that this boy liked cars also. JP said something like “Cool. Let’s play cars!” and they proceeded to build an elaborate road and played together like 5 year old boys should. JP played appropriately and it was a wonderful learning and social experience for both boys!

However, that learning opportunity would very likely have been lost if there hadn’t been the adult hovering near by to witness his “friendship faux pas”. We continue to struggle to understand the friend concept. JP was likely confused and unsure of how to respond to his peer. I have no idea where the idea to yell "Boo" came from but this was essentially a brand new experience for him. He did not know how to respond. He needed guidance. This is likely what will be typical for him in these foreign situations. He is making steady gains but his adaptability in social situations definitely needs more practice. If left on his own he will not know how to self correct. For now, he needs an adult to help him understand these situations.

In my opinion, this is exactly the type of situation that will make or break his future. Unfortunately/fortunately social skills in kindergarten build into social skills in adulthood. If left unchecked his social deficits will render him an outsider. These failures will directly impact his life, confidence and learning as a whole. The best thing JP has going for him is that he can be a quick learner. Thanks to the support the adults provided, the second approach between the two boys worked magically!

I truly believe that a successful Kindergarten year will allow us to fade back his supports in the future. He needs help learning how the elementary school structure works and guidance on how to interact with his peers. His use of language has come along wonderfully but he still doesn't fully understand the skills of communication. Once he understands the process he will gain confidence. However, JP does not learn these things on his own. I fear that putting him in the mainstream environment without scaffolding in place will likely cause him to take steps backward. He is already behind his peers. We can not afford to let him regress.

Intellectually JP belongs in the mainstream. Regular education is his least restrictive environment. Intellectually he can learn these other pieces of the puzzle. But we must help him understand. I know this little boy and firmly believe that he will adapt well and once he gains his footing there will be no stopping him. But we must set him up to succeed!

A few of the elementary staff members visited JP's preschool during his last week of school. I believe that they will agree with my assessment. I am sure his former preschool teachers would also be willing to provide their insights and concerns about his needed level of support. He has made huge strides this past year and I really believe that with the right structure around him he will continue to grow and catch up to his peers.

I know that the intentions were to have Mrs. L and her staff provide JP's supports during those first weeks until we could better evaluate the situation. However, I really think that we need to reconsider. The supports we have already agreed on will be there during group times, but as we saw at Roundup, JP's communication difficulties will be experienced during his entire day at school. I believe it will be imperative to have a second set of hands in the classroom in order to make this year successful for both Mrs. A and JP. I have no doubt that these supports will need to be firmly in place for longer than 4 weeks and want to urge you to consider acting on the staffing requirements now. It will be better for everyone involved to have the group assembled before that first day of Kindergarten.

I must say that I am excited by how helpful everyone has been. I know that we all want next year to be a success. I believe that with the right supports JP will continue to amaze us all and that down the road these supports will be unnecessary.

Sincerely,

MWAM

Decisions and more decisions

JP does not qualify for special education summer school. He has not qualified since his first year. I could have fought it. Their rational was that during his first summer he did not regress. Of course not! That is the summer we started our home program. When we did his IEP in April we were aiming for 2 word utterances. When I reconvened the IEP team in September we adjusted as he was averaging 5 word sentences. Yeah, he didn't regress. I have the cancelled paychecks for the 20+ hours of home help we hired and trained. He sure as hell better not have regressed!

So anyway, the next summer they dropped us from services because he wasn't at risk for regressing. I didn't fight it. I wasn't convinced the school program was really going to move him forward anyway. It really felt more like a couple hours of daycare for a couple weeks of the summer. We opted to pay for a Recreational Therapy camp at a local facility here in town. This camp is for kids with various disabilities. It was more fun than therapy but when you have a kid with social issues...fun is therapy! Plus they have a buddy assigned every kid. So JP was set to get 1 on 1 interaction. So anyway, that is what we did last summer.

This summer I was sort of at a loss of what to do. I had prepared to push the school for summer services so that we could keep him in the "school" mode straight into Kindergarten. I read somewhere in the legal mumbo jumbo that summer services are critical during transition phases. So I was going to play it up that way.

But I didn't have to. The elementary school that we are going to had a special program for incoming Kindergartners. The kids will attend Tuesday, Wednesday and Thursday for a couple hours. This was open to all Kindergartners at our neighborhood school. That is roughly 80 kids. They could only accept 30 into the program. At parent night all of the parents were scrambling to get their application in. I locked into the program through my IEP.

But now that I talk to the principal, they only have 12 kids coming! Can you believe that! Us special ed parents have to fight for everything and the general ed population just threw away (6 weeks x 7.5 hours) services to help prepare/ease their children into Kindergarten. (I ask myself what happens to that grant money!) Unfortunately, Mrs. A (his Kindergarten teacher) was not going to be teaching the classes but it was going to be a chance for him to get to know a few children from his upcoming class.

Well, the principal asked me a couple hard questions. Because of his academics being advanced she thought JP might benefit more from attending with the 1st graders. These are kids coming back for summer services. This class will be taught by the Resource teacher and a 1st grade teacher. This will be JP's resource teacher and the first grade teacher will likely be his teacher next year as she has taught for 17 years in a self contained special ed room.

Here are my thoughts:

1. The kindergarten program will only have 12 kids. Only 3 will be faces JP will see next year. The teacher of this program has no experience with special education or autism. The para they would put in with him would not have experience either. Because JP doesn't get adult support 100% of the time he would only qualify for 1 1/2 hours ( out of 2 1/2 days) of support at summer school. (However, I was invited to meet with the teacher before summer school to help her understand JP's issues)

2. Many Kindergartners will not have been in preschool before. They will be learning how to sit with the group and behave. JP has already been through 3 years of this. However, all it will take is one hyperactive child running around and JP will be up running with him. Without an adult to remind him to sit quietly we will very likely lose those classroom skills. I fear him "learning bad habits". I am not sure the teacher/para will understand what kind of support he needs in this situation. I fear regression.

3. I worry that he is already socially behind his fellow 5 year olds. Won't his social issues be even more apparent with the 1st graders? Also, who is to say these 1st graders aren't in summer school for "behavioral" issues? Who is to say that they will be better role models?

4. Putting him in with the 1st graders will allow him to meet his resource teacher and his 1st grade teacher. This will give them insights into his issues. They would be invested in his success since they will have future relationships with him and me.

So anyway, I bit the bullet and agreed to the 1st grade placement. I just felt that it had the most positives. I had hoped that this program could have given him a boost with some of the peers from his class but atleast it will give him a boost with his relationship with the adults.

We'll start next Tuesday. I hope it goes well. How is a parent ever to know what is right?

23 days

Along with the rest of the world, I have been watching the Paris Hilton saga unfold. Not on purpose. You can't get away from this stupid story. It is everywhere. Someone somewhere decided that this spoiled brat, who has done absolutely nothing to earn her place in society, is newsworthy. Much of the world is watching and laughing at her "misfortune".

This whole storyline is sad. It truly shows how corrupt our society has become. We live in a society ruled by social class. Those of us in the autism world know this all too well. Money talks. Even in the autism world. For example, we don't know what treatments will work--until we try them. It is trial and error. That is hard to do with limited finances. Ultimately, money gets treatment. A family with money can explore everything until they find the magic bullet for their child. Money equals a better chance at a brighter future. Yes, there is still a lot of work and luck involved but there is a chance for these elite children.

Children born to ordinary citizens are given very little chance to overcome. Very few of us have an extra $60,000 per year to spend on behavioral therapy. Very few of us have the continual stream of dough to navigate the DAN protocol. We do the best we can. We dabble in therapies and hope to find our magic bullet. We can't afford to devote time to a therapy unless it shows immediate gains. Most gains are not immediate. Many of us can't risk depleting our limited funds to ride it out. No overnight gains--time to move on. Simply because of their lot in life, our children may very well miss out. They may not get to develop to their full potential.

Money talks. Some of our kids can't.
Who do you think will be heard?

Enough of my soapbox. Anyway, back to the Hilton fiasco.

Tonight at supper my husband commented that it was sort of sad that Paris is pulling out all the stops to get out of jail and (based on my day from hell) I would probably willingly take her place. 23 days to myself might just be what I need! (Of course I would prefer 23 days in Hawaii.)

I thought I'd give some thought to how I would spend my 23 days in isolation. Imagine 23 days of solitude. Close your eyes and envision 3 weeks and 2 days without responsibilities. What would you do with those 23 days?

1. Sleep.

2. Listen to the silence.

3. Revel in the fact that I don't have to be somewhere. I'd have no schedule to keep!

4. Read a book from start to finish with no interruptions. Then read another.

5. Sleep.

6. Get to know the person I have become. (Currently I am not sure who she is)

7. Reflect on the lives of my children and journal the best and worst moments while they are still fresh in my mind.

8. Revel on the fact that I don't have to think and organize and constantly be engaging another human being.

9. Revel on the fact that I am alone! I am not responsible for another human being!

10. Sleep.

11. I can eat what is in front of me. I don't have to be a short order cook and prepare different foods for different picky eaters.

12. I wouldn't have to hear the same phrase 100 times an hour.

13. OMG! I can use the bathroom alone!

14. Reflect on my life: where I have been and where I want to be.

15. Sleep.

16. Investigate if I really do have any spirituality left in me.

17. Exercise. I wouldn't have an excuse not to!

18. Write letters to family and friends that I've lost touch with.

19. Breathe.

20. Sleep.

21. Listen to music. Real music not the Wiggles.

22. Take time to evaluate my life and really focus on what is important. Look for the big picture rather than the small stuff I always get hung up on.

23. Miss my family! But without a doubt they would be getting a better Mommy back when I returned!

Isn't it sad to fantasize about life in a jail cell?

No pain -- no gain?

Monday was JP's first dental visit. Yes. I am ashamed that he was 5 1/2 before he ever sat in a dentist's chair. But for the life of me I couldn't figure out how to make this event work. Perhaps I have been a coward. But atleast now it is over and atleast he didn't come out of it with a dozen cavities.

Well, hubbie's work has dental insurance. I had checked with other autism families around here and got a few recommendations. But nope. None of these referrals accept patients with our insurance plan. We could pay for the premium dental insurance that work offers but it was going to be $50 extra every month. So we decided that we would just have to find a respectable dentist served by our plan. The dentist Hubbie and I use did not really seem ideal for children so we looked for a pediatric specialist. There has to be someone suitable, after all we do live in a fairly large metro area. Nope, there were only 3 dentists listed as accepting new patients with our dental plan and they all 3 belong to the same practice. That is ridiculous! Have I mentioned how frustrated I am with healthcare in this country?

So while we tried to sort all of that out, we spent the past few months playing dentist at home. I bought a teeth cleaning set at Walmart and we practiced opening up for Dentist Mommy. JP now tolerates me touching his teeth and will open long enough for me to count them all. I've even been able to kind of tap on them without a fuss.

Finally we just settled on our family dentist. He is a nice guy but there is absolutely nothing elaborate about his facility. It actually looks exactly like what you would expect from a dental office in the 1950s...down to the swirly spit bowls. It wasn't ideal. He says he does work with children and was up to the challenge so we gave it a try.

Monday was our checkup. JP did really well! I was by his side and the dentist and hygienist did a great job of explaining what they were going to do. When they used the various (noisy) tools they showed them to JP first. They even let him push the buttons to try them out. He and the hygienist even had a little water fight with the water squirter tool. Ultimately, they were able to view all of his teeth and accomplish a very basic cleaning with the electric toothbrush.

Unfortunately he does have a cavity in his upper back. We tried to do the X-ray but that was just too difficult. JP couldn't get the Xray thingy in his mouth let alone bite on it and keep it there while they clicked a picture. Nevertheless, the dentist recommended a filling. So we fearfully made an appointment for Wednesday and headed home. We were elated that our first trip was a pleasant experience. However, I must admit that Mom was terrified that our second experience would ruin this first success.

So today we pulled out all the stops. Since Dad had to take the afternoon off to be with Trey (during the dentist visit) we just combined it with a trip to the Children's Museum. JP saw a commercial awhile back for a visiting Bob the Builder exhibit and has been expecting to go every day. He just keeps saying, "In the next morning we'll go to Bob the Builder".

It was a fantastic time.








Unfortunately our departure from the museum was less than perfect. JP flipped out. He did not want to leave. Oh well. Who could blame him?

So we took T and Dad home and then headed to the dentist. JP listened to his "therapeutic listening" CD while we waited. I gave him space. We talked about what to expect them to do. He understood that he had a cavity and that a cavity is an owie on his tooth. The doctor was going to clean the owie and then paint a "tooth bandaid" on it. He seemed okay. It felt like he was saying, "Sure, Mom, whatever. " He acted like this was going to be a routine trip to his new friend the dentist.

During our discussion I discovered that his biggest concern was his confusion when the dentist told him to open up like a crocodile so he could see all of his teeth. You see, according to JP, a crocodile goes "chomp chomp". He couldn't understand why the dentist would tell him to chomp chomp when he is trying to reach inside his mouth. Obviously the dentist didn't understand that a crocodile would bite his hands off. So instead, we worked out a signal of touching him on his chin to get him to open wide. It seemed to work. And he didn't chomp on the dentist.

So if you are interested in what JP had to say I transcribed our bedtime conversation on our Daily Ramblings link.

I am a little concerned that he never seems to express pain. He was bothered by the noise and squirmed considerably. But he would not admit to any pain. Now I haven't had a cavity filled in years but it seems to me that there should have been some pain to articulate! They did nothing to deaden or anesthetize him. Don't get me wrong I am not trying to create drama where there was none but this does bother me. It doesn't feel right.

I don't know how to teach JP to recognize that bad feelings exist and that it is okay. He just always tells us he is happy even when I know it isn't the case. For example back in March when he got his toenail ripped off. He would not acknowledge pain. He insisted that his feet were happy even when he looked like he might pass out.

This pain acknowledgment seems like an issue. He needs to know how to recognize bad feelings so that he can choose to remove himself from them. Even in it's most basic sense this seems like an issue of self preservation. I have to wonder if he put his hand in an open flame would he think to pull it out. Or would he just think it is what is expected and endure it? Am I being overly dramatic. Yeah, probably. But today's "success" has me wondering.

Isn't it annoying that I can't just think..."Wow, today was a success!"

A much needed release

Well, I screwed up. I'll state that at the beginning. It really isn't that hard to admit. I don't like admitting it but it is bound to happen now and then.

Today T had a well baby checkup. My calendar said at 1:45pm. Dad arranged to work from home so that JP could stay home with him. When Dad asked me what time the appointment was I said it was either 1:15 or 1:45. I couldn't remember. I'd have to check the calendar. We live and breath by our calendar. It tells us what we need to do and where we need to be.

So T and I leave for the doctor. JP is playing Nick Jr and under Dad's care. Our drive goes rather smoothly. I am strangely at peace that we aren't rushing so I let T walk alongside me while holding my hand. His little feet scrambling as fast as he can to keep up. We walk into the lobby. We aren't rushing because we are quite early for our appointment. T pushes the elevator button. We get in. We get out. We walk through the empty waiting room to the receptionist. I tell her who we are and who we are there to see.

She says that since we are late for our appointment we will have to reschedule. My jaw hits the floor. We're late? Our appointment is for 1:45! She says that it was for 1:15. I'm disoriented but figure mistakes happen. I politely assume credit for the mistake and say that I must have written it down wrong. I nicely inquire that since we are here and they don't appear too busy maybe the doctor can still fit us in.

Nope. We'll have to reschedule. I pause as she grabs the schedule book. I stammer. Well, I can't reschedule right now because I have to have my calendar. We have our life organized down to the 15 minutes and I don't know what date and time we would be able to arrange. I guess I'll have to call the office. She tells me to do that.

T and I start to walk back to the elevators. We walk through the barren lobby. There is not another single living breathing patient to be seen. My brain starts thinking how ridiculous it is for us to drive all the way back home, call to make an appointment and come back another time when the doctor obviously isn't over booked for the day. The elevator has already arrived when I decide to give it another try.

We approach the receptionist again. I explain that our lives are crazy and if I made a mistake on the time I apologize but since the doctor doesn't seem too busy could they squeeze us in. (Ha! How do you squeeze into a wide open space??)

No.

I state that surely if we were a sick child they could work us in. I explain that it is a well baby visit and we aren't getting any shots so it wouldn't even take that long.

She explains that if you are more than 15 minutes late you have no choice but to reschedule. It is policy. (At this moment I see the doctor walk by in the hall and go into his office.) No other patients are wandering around. And that proves that he is still there and not already out on the golf course.

Uh. Okay.

We turn and walk to the elevator. We get in. I am pretty sure I have steam coming out of my ears. This is ridiculous. The doctor is there. He isn't even seeing a patient. There are no patients in the lobby. It isn't that late. Had we shown up "on time" he would still be with us.

T walks alongside me to the van. I walk to the passenger side to open his door but find that my clicker won't work. I scoop him up and walk around the van to the driver side where I can unlock it with my key. While I am there I grab the cell phone thinking that I'll call my husband to bitch about the lunacy in the world. That is when I look at the phone and it says 1:39.

According to the brick wall behind the reception desk, " if you are more than 15 minutes late you must reschedule". Even if my appointment was at 1:15 by their standard I had until 1:30. I have had time to argue with her twice and walk to my van. I have no doubt that it has been more than 9 minutes since my blood pressure spiked. Even if there hadn't been time for 9 full minutes to elapse that means that I showed up in her lobby probably right at that 15 minute mark.

Damn it. That isn't fair. She is messing with me. If she wants to play by the "rules" than I am going to let her know that she is also in violation of the 15 minute rule. I put T in the stroller and we marched back in. We take the elevator and approach her desk.

I explain that according to the clock on my cell phone it is now 1:41. If we are operating based on their 15 minute late policy than I was very much here before or right at that time. She doesn't budge. That is the rule. Since it is now 1:41 that makes us much more than 15 minutes late. She doesn't make the rules. She just has to follow them.

I state that this is ridiculous. I'm arguing principle more than anything. I am just annoyed.

Here is the thing. This doctor is a nice guy. He has been fairly supportive of our work with our DAN doctor. He was totally on board about us waiting until T is older to vaccinate. In fact, he suggested it! I really wanted to tell them that with customer service like this they can go to hell. But I can't. I hear horror stories about doctors that "fire" families that don't vaccinate their kids. At the very best, most autism families have doctors that "tolerate" their dabbling with biomedicals. This doctor shows interest in what we do. He is former military and believes that there is reason to pause about the vaccination components. He talked at great length about the Gulf War Syndrome issues and the amount of vaccinations we gave our troops before they served. He really is an open minded and respectful doctor. BUT his office policies suck!

So here is the thing. I just kept getting more and more angry on the drive home. I figured I messed up the time. In fact, the calendar on my refrigerator does have 1:45. The explanation is that I had a paper calendar I was working off until all of our summer events got confirmed. On that calendar I had written 1:15. So I screwed up when I took the paper calendar and put it on the computer copy that I printed for the frig. I messed it up. Yep, it was my error.

But am I being unreasonable to be annoyed with their unwillingness to see us. The receptionist was condescending and was just so damn unfriendly. I am not a flake. Perhaps the most annoying part to me is that we were incredibly early for the time I THOUGHT we were supposed to be there! I am a conscientious parent and I understand that the doctor's time is valuable. I did not blow off the appointment expecting them to be there waiting when we arrived. I was not meaning any disrespect but I totally felt disrespect in return.

Anyway, we came home. Dad was on a conference call for work and gave me a perplexed look. His look said, "what the hell are you doing home so early." That is when I lost it.

Was it because of the doctors office? Somewhat. But I am so tired of walking a tightrope. I am so tired of life having to be planned down to the 15 minute interval. I am so tired of having to figure out how to fit my square peg family into the round holes of society. I am so tired of rules that have to be followed in order to not experience anxiety attacks or meltdowns. I am so tired of having to plan and prepare for every single event of our lives.

I want to be the mom who can just show up to a doctor's office 15 minutes late and expect things to work out. I am frustrated because for those moms life does works out. I never get to be that mom and it is taking a toll on me. I am so sick of beating my head against the wall. I am exhausted. I want life to give me a break for once. Why does everything have to be so hard?

Is this experience with the doctor's office really equal to the amount of tears I have generated? No. But apparently I needed the release.



**For the record, although autism has thoroughly exhausted me it has apparently done me some good. I would never have been brave enough to stand up to the receptionist before. I never ever spoke up for myself. Ever!