Some stuff-the IEP version

• After an abrupt and semi-bullying meeting with the administration at Jakson's school last week regarding the shortened day we have him on, I sat down and composed an email to his teacher and the admin explaining our reasons for the decision (again). Basically, I told them that I understood it was not what the admin recommended, but we were doing it anyway. I asked the teacher to let me know if he falls behind (ha ha) and we will readdress the shortened day if that problem should arise.


• Then I didn't sleep for a couple of nights.
  


• Knowing his IEP was coming up and afraid the short day was going to be discussed again, I called an educational advocate here in town to get some advice. Per her suggestion, I spent Thursday and Friday rounding up letters from his pediatrician and various therapists supporting our decision to keep him on a shortened day to give to the school.


• Another sleepless night came on Friday because Saturday was our first Bountiful Basket pick up. I was so afraid that it wasn't going to go smoothly. My biggest fear was that the truck wouldn't show up on time (or at all). I seriously laid awake for hours thinking of all of the worst case scenarios.

• I should not have worried-everything went perfectly and without a hitch. The produce was fantastic quality (dare I say, even better than Utah) and it was fun getting to know the volunteers who came to help out. I'm even more excited about doing this now that we've had one successful week!

Photo from my friend Cathy of her BB produce.

• Finally! I got one good night of sleep!

• Jakson's IEP (ARD) meeting was Monday. I was so nervous that I didn't sleep Sunday night at all. All morning, I felt like I was going to vomit. Thankfully, Zak and I had a moment in the parking lot before we went into the school to say a prayer together and ask God to lead us. I felt impressed to put away my therapist/pediatrician letters and not bring up the subject at all. By the time we reached the doors to the classroom, I was feeling calm and the meeting went surprisingly well. They did not mention the shortened day schedule and neither did we. Thank goodness for that email I had written the week before and the prayer said in the car.


• Sleep!


• Since the more pressing matters were taken care of, Storey and I went and rounded up all of the supplies for her pink owl costume. Jakson is still undecided about Halloween this year. He thinks he might want some candy, but possibly not enough to dress up for it. Right now, he's tossing around the idea of dressing as an astronaut. Of course, one of the most difficult costumes to make. I really have no idea where to even begin. An upside down fish bowl? I am trying to convince him otherwise. Bill Nye (or Bill Bob as he is referred to around these parts) the Science Guy would be so much cooler. And easier to diy. Lab coat, safety goggles, red bow tie, done.
  

Help Wanted: Seeking part time diva.

Update: position filled.

Jak's Room

For fun and documentation's sake, I took a few photos of Jakson's new room. All it's missing is a big poster of the human body, then it will include all of his current obsessions (not pictured are the glow in the dark planets on the ceiling that Grandma gave him).

Just in case you're wondering:

• clipboards: DownEast Outfitters Clearance Outlet in West Valley City (best kept Salt Lake Valley secret)-they are originally from Pottery Barn Kids, but I only paid $3 each.
  
• I Am A Child of God print: Persimmon and Pink
• dinosaur flash cards: thrifted (from a book)
• laminated Eeboo! maps: garage sale score, $1 each!
• dinosaur alphabet print: Olives on a String
• green bed: IKEA loft bed with the legs cut down (he kept breaking his teeth out. no, really). Spray painted green by popular request and ends covered in wrapping paper.
• Number bedding: IKEA-discontinued
  

The missing letter

This is the one document I thought was missing from Jakson's paperwork the day he was diagnosed. A letter from a mom telling me "Everything is going to be all right". I've had quite a few emails the last couple of months from friends and strangers asking me to give advice to moms dealing with a new diagnosis. I feel terrible that I haven't had a chance to answer given the recent craziness of moving and starting school. This is my reply.

P.S. I'd love to answer any specific questions or act as a sounding board-please feel free to email me. I love meeting other Aspie/ASD/Autism moms. We gotta stick together.

Dear Mom,

Today your world has changed. Whether you came into this appointment suspecting an autism diagnosis or not, it hits you hard. Something about hearing those words pronounced by a professional makes it so much more final. Concrete. Real. Even if deep down you've known all along, it's tough to swallow.

In a way, an official diagnosis is a relief. How many times have you wondered why other mothers seem to have such an easy time with their kids? Social outings, park group, play dates, even running errands-all done without a worry. You usually don't see other moms chasing their kids out the door as they run away from story time screaming even though you've been coming to the same libary, with the same kids, with the same routine for almost a year. Oh, and that meltdown in Target last week about something that happened six months ago? It's not just your parenting. There really are some issues that other moms aren't dealing with.

There will be guilt. Get ready for it. You'll wonder-Did I do this to him? Did he inherit it from me? Could I have done something differently to help him? Should I have just changed his diet and he'd be fine? The answer to these....no, no, no, and no. And don't let other autism parents tell you differently. One of the first things I learned after my son's (Jakson) diagnosis was that there are a lot of conflicting opinions among parents about causes, therapies, and "cures" and frankly, a lot of them are guilt inducing. I don't understand why (shouldn't we be supporting each other?), but you have to take the articles and advice with a grain of salt. If it sounds crazy, it probably is.

The worst part (at least for me) was when the future questions set in. Will he be able to make friends? Will he get teased? Get good grades? Go to college? Move out of our home? As soon as we walked out of the autism clinic, I had fast forwarded 20 years and Jak was still living in my house! The only way I've learned not to get overwhelmed by the future is to literally never think about it. Take one day at a time.

You'll have plenty to deal with one day at a time anyway. You are your child's BEST advocate and the schools will be proving you. Become educated about autism, about your rights, the laws, and know exactly what you want before you step into a single meeting about your child. No one knows your child or cares as much as you do. Make this your mantra: I am right. I know what is best. They will push, but be prepared to push back.

For me, the most effective way to heal grief was to read about adults with autism and what they have done with their lives. I can't tell you how much comfort John Elder Robison's Look Me In The Eye gave me. Or The Way I See It by Temple Grandin. In fact, after reading those books, I was excited about Jakson's autism!! Eventually you will be able to gather enough information that you will be able to figure out how you feel about autism, find therapists and other professionals that share your beliefs, determine your own, unique philosophy (how does our family approach autism, what are the long term goals for our child, etc) and come to grips with your "new normal".

Don't be mistaken that once your initial struggle is over it's all rainbows and unicorns, because that's not true. There are times when I still find myself starting over----coming to terms with our reality all over again. But, thankfully with the help of a great support team (my husband, family members, Jak's therapist), we can get through any setbacks and realize that the goal we all want for Jakson is attainable. Happiness.

My personal autism philosophy has not changed much in the past couple of years. I'm not looking to find the "cause" of Jakson's autism nor am I searching for a "cure". Autism is not cancer, it's not a cold, this is basically my child's whole being. His personality without autism would be completely different. Sometimes it would be easier to deal with, yes, but Jak wouldn't be Jak without the dinosaur obsessions, his organizational skills, or his need for a tight squeeze---all things that can be attributed to autism. This doesn't mean that we won't involve Jak in therapies. I don't believe that we should deny that he has some challenges that need to be addressed so that he can function in society, but my goal isn't for a "cure", instead it is for Jak to lead a happy life. Even if it isn't the life that I had originally envisioned for him.

Everything is going to be okay. Take a deep breath, let yourself cry, realize that other parents will never understand what you are dealing with, give yourself a break and give yourself a little credit, do a lot of research, know your rights. You are the mom and mom's always know best.

Much love,
A mom who has been there

Some stuff

• Storey insisted on wearing a princess dress today to run errands. She wanted to wear the matching shoes, but I do draw the line somewhere. Princess shoes + 3 year old = injuries.


• Speaking of injuries.....while we were at the library, I got a call from the school nurse. Jakson was walking with his class outside and somehow managed to slip off the curb and face plant into a parked car. That's my boy. Frankly, I'm surprised a visit to the nurse hadn't come earlier. Two whole weeks without an injury! (He's fine, by the way).


• I've been in a book rut the past few days. Every book I've picked up, I've lost interest in quickly. Because I'm no longer assigned these books by teachers, I can just turn them back into the library without finishing them, but I always want to give the thing a chance. After getting half way through one of them last night, I gave up and started on a YA biography. Not my usual genre, but I'm really enjoying it. Finally!


• After Jakson got home from school, I asked him how he managed to run into a car and he informed me that the the sun was bright so he was walking with his eyes closed. Wow. Not sure what to say about that.


• This week I had my very first day alone in five years. Both kids were finally healthy and both went to school. I can't begin to tell you how nice it is to be able to grocery shop without screaming children. Maybe you don't know because yours don't scream all the time, but I will attest: it is fantastic. Then Thursday, I went and had brunch with a friend!! I know! BRUNCH! WITH A FRIEND! AND NO SCREAMING CHILDREN! This is what freedom feels like.
  


• My Bountiful Basket site is set to open next Saturday! I'm a little nervous seeing as it's the first in Houston and I'm worried about everything going smoothly, but excited to finally be getting cheap produce again!! Contributions (basket orders) open on Monday at noon. If you want more info about the BB site in Houston, sign up for my newsletter here. Bountiful Baskets is completely volunteer run--anyone who is interested in volunteering at the site is welcome to come help out!


• I'll be teaching a photography crash course class locally in October. If you are interested in learning about using your camera's manual settings and taking better photos, head over to my photo site to get all of the details.
  

Once again, Storey gets the shaft.

When you have one child with special needs, unfortunately the other child often doesn't get as much attention as she ought (you know, squeaky wheel and all that). Poor Storey. Jakson was sick last week, which threw off his routine, which made him anxious about life, which caused more meltdowns than usual, and dealing with that caused me to overlook the momentous occasion that was her first day of preschool.

Ah well. Eventually I'm sure she'll forgive me (if she even noticed that I forgot to pose her in front of the door for the token "first day photo"). I did remember on her second day of school and she was just as excited as the first, so that should count for something.

Like, gag me with a spoon.

Storey and I have been spending a lot of quality one on one time now that Jakson is in school every day. And truth be told, our time together has taught me that she is even crazier than I previously suspected.

Here is a sampling of the conversations I've been having with her....

Scene: Driving to the store/running errands.
Storey: Mommy, I have a magic wand. I am going to turn you into Baff (Beth). Waves her tin foil Daddy-made wand. Now you are Baff.
Me: Mmm hmm.
Storey: Baff, I'm going to give you a black computer. Baff, what will you do with the black computer? Baff, now I'm going to give you a cack-cack (backpack). You are going to school Baff.
Me: Okay.
Storey: Baff, I'm going to wave my wand and you'll be Mommy again. Waves her wand. Hi Mommy!!

Scene: Walking out of her first day of preschool.
Me: Storey, did you like school today? What was your favorite part?
Storey: I like school, but I did not learn ANYTHING!

Scene: Helping her change into pajamas for her nap after school (she insists on wearing pj's at naptime)
Me: Since you didn't learn anything today, what did you do at school?
Storey: We aren't supposed to put our fingers in the cage with Skeeter (the class guinea pig). He will bite your finger because he thinks it's a carrot. So leave him alone. Don't get close to the cage. He's asleep. Leave him alone. LEAVE.HIM.ALONE!!!

Scene: Getting dressed in the morning.
Me: Storey, how about this shirt? It's got some pink on it.
Storey: No, I WANT TO WEAR A DRESS!
Me: Okay, why don't you wear this pretty dress?
Storey: That's from Old Navy and I don't like Old Navy.

What??? Next she'll be banning girls from the bathroom because they aren't wearing Osh Kosh B'Gosh (True story. I never was part of the cool kids club. Even in kindergarten.).