Scratching?

Dear Autism Community,

Should I be worried that my son won’t stop scratching his ankles? I’ve been told this can be a common stim… How do I stop it? His ankles are so sore and making him cry!!

:) thanks.

Planning, planning, planning…

What's for dinner?As any mom knows, you have to have some kind of planning in your home or everything just falls apart by lunchtime. This is 100x more true if you have a child with autism. Zack thrives on structure. He has a daily schedule that he truly does well on and I couldn’t imagine our life without it. I wonder if other autie-loving families rely on their magic erase boards as much as I do…

I decided to start planning my meal plans in a more productive manner. It’s just not working very well for us when I go shopping and drop random things in the cart and then we go home and… well, what kind of meal am I going to make with salmon, baked beans, and mandarin oranges? Yuck. So, we wind up eating out a lot. Today, I decided I’m going to sit down and write out all our favorite GFCF meals and then I’ll have a list to look at when I’m planning our weekly menu. The weekly menu will be posted on my kitchen white board and then there’ll be no more “what’s for dinner?” Ummmmm…. hmmmmmmm…. Applesauce and chicken broth?

I’m going to post a page with our favorite meals today. And, I’m planning on a “New Recipe Day” every Monday after the Christmas season is over. We love to try new things but that’s risky with GFCF since half the recipes I try fail. So, once a week is plenty of new-tastes for us!

For breakfast, Zack had scrambled eggs, a banana, and 100% juice. He had a pajama party at school, which included popcorn. I sent a bag of air popped butterless popcorn from home. Lunch was chicken nuggets with crushed Lays Original as breading, baked fries, oranges, and Heinz ketchup. He’ll have some Christmas shaped marshmallows for a snack. And then, he’ll have quinoa pasta and Prego sauce with green beans for dinner.

New Years Resolutions.

Write.What’s the point of making them? Nobody keeps them anyway. Well, unless you’re a goal-oriented-perfectionistic-OCD-mom with a total phobia of failing. Like me. Yeah, I always meet my resolutions. Come hell or high water, I make them. In 2005, I wanted to put away my size 12/14 jeans and wear a 6. I’ve been maintaining a 4 for 2 years now. In 2006, I wanted to concentrate on optimism. If you’d known me before then, you’d know that I can’t get much perkier than I am now. In 2007, I wanted to give birth to get back into my pre-preg clothes and read 52 books in 52 weeks. I’ve been back at my pre-pregnancy weight since Zander was 3 months and I’m currently reading book #57. That’s just who I am. I’ve noticed a lot of moms of Auties with this same have-to-succeed attitude and I wonder if that’s why we’re given these little bundles of blessings. Did God hand Zack to me because he knew I would set a goal to recover him and I wouldn’t rest until that goal was met? Is that my purpose in this world?

This is my first New Years with the knowledge of Zack’s autism. Actually, this is my first New Years with any idea that Zack wasn’t perfectly normal. You see, other than delayed gross motor skills and a refusal to talk, Zack was TOTALLY “normal” until February of this year. February is when we started noticing that hey, our boy is really quirky. And, I mean that in an awesome way. I LOVE Zack’s personality! In April, we found out that his fascinating quirks were actually red flags of Autism. Ok. The news wasn’t easy at first (especially for my husband) but we worked through it and now we realize that Autism is a label… NOT a definition.

But, I still want to recover Zack. I still want to help him find his voice. Who wouldn’t? So, my New Years resolution is to be the best mom of an autie that I can be. I am going to be his advocate, his home therapist, and his best friend. The steps I am taking to complete this goal:

  1. Calm Down. Eat chocolate, do yoga, take a hot bath. Whatever it takes to recenter myself and find peace during stressful days, I will do it. Like any other overanalytical, obsessive-compulsive Libra, I tend to stress out a lot and I need to stop that.
  2. Research. I want to gather all my sources and learn as much as I can about home therapy so I can not only be the best for Zack at home but so I can teach the people who are with him on a daily basis how to work with my son.
  3. Create a System. I want to set our downstairs playroom up to be a great sensory room for both the boys (Zander will also benefit from a little more structure as he grows up). I want to decorate the room in warm and welcoming colors instead of the typical over-stimulating bright colors that you usually associate with a playroom. I want to organize toys and set them up so instead of being surrounded by so much, we can put things away and concentrate on only one thing at a time.
  4. Organize. What GFCF meal am I making for dinner tomorrow night? Who knows! I have fallen so hard off my organization wagon and that is why this diet is still a little harder for me than it should be. I am going to use my chart and list making skills to create an organized no-fail environment. I will also learn to schedule my time better so I am never left having to bring Zack into an over-stimulating grocery store with me. The outcome is NEVER good.
  5. Help with our Income. Okay, so this is mostly my husband’s department. With his career location closing, he opted for the severance pay package so he can start the home business he’s been wanting to do. To help him, he asked me if I would be willing to learn data entry and word processing. I am fast with a keyboard (I type 133wpm) and I love being on the computer. If I can help take some of the mindless busywork off his shoulders, he can take on more clients and we can boost our income up to help pay for all of the things that are going to start hitting us soon. Oh, and I’m opening an eBay store too! But, that’s more of a hobby :)

I might add another step or 2 before New Years but for now, that’s my brainstorming. Zack is having a fit upstairs though so I’m running to check on him and tuck him back in. Muah!

Running in the family?

10 ThingsI am so excited to read this book. My mother brought it to me last week and I’ve been dying to open it and explore the world of Zack. But, with it being such an easy read, I figured it would be best to read it during our 5.5 hour drive to my husband’s family holiday party next week. My husband wants me to read it aloud during our trip because he wants to learn about Zack too but has no desire to ever open a book.

Which brings me to my next thought… Does falling somewhere along the spectrum run in families? Throughout my son’s baby years, we always compared him to his dad. “He is just like his father used to be” was a common phrase from my mother-in-law in the beginning. My husband was very socially awkward until we met and I dragged him from his shell of antisocial-people-hating. He also avoids anything remotely similar to confrontation (including eye contact) and he is unable to concentrate on something for very long unless it’s one of the few things he’s EXTREMELY interested in. He’s brilliant though and if he IS interested, he knows everything about it. And, as much as I love my stubborn husband, he can be extremely condescending if you disagree with him. I don’t know. It’s just a thought that has entered my mind and I’m almost positive it has to enter every parent’s mind at some point or another when they discover that their little one has autism. Did it come from the family? Hm.

This thought process led my husband to me too. I get irritated extremely quickly. I cannot just tune noise out like most people. If a bird is outside singing, I’m going to scream at it to shut up. If my husband turns the TV volume up above 17, I’m frustrated. I cannot stand our surround sound and the car radio does not need to be louder than audible unless it’s Nickelback or Billy Joel. I also have a bubble around me and Heaven help most people if they cross my bubble walls and touch me. “Don’t hang on me,” is a favorite phrase I use to everyone except my children. My husband has been permitted to cross my bubble walls as well but I will still only tolerate it for so long. I am also cold easily and if a breeze touches my skin I am going to put a sweatshirt on and shiver. I don’t care if the Vegas weather reaches 115, I will wear a sweater if there is a breeze. My husband thinks I have Sensory Integration Dysfunction. I think he has Asperger’s.

Is this line of thought common in parents of autiebabes or are we just nuts?

Brought to you by the number 6.

The best invention in the world!As I sit at the table with my 3-year-old and a pile of colorful bears, I start to wonder what other 3-year-olds are capable of. Is my son able to do more when it comes to intellect and skills? Is he doing less? I know that one should never compare their child with any others, but when you spend 24 hours every day wondering just what you should be teaching your child, you tend to think in terms of comparisons. Is his counting up to par or should we work more on it? Colors? Drawn circles? Should we spend less time playing matching games and more time stacking cups? Or, should we forget table time all together and concentrate on larger motor skills at the playground?

Boy, I wish children came with manuals…

The diet is going fabulously! We’ve had no known accidental gluten or casein moments and while Zack is still a little ball of energy, his behavior has settled in the anger and frustration department. He is very outgoing right now and will talk to anyone and expect a response immediately. If there is no response, he will repeat himself until he feels heard. He is also counting, but he refuses to say the number six. Six is evil and ignored. Even if I correct him, he will skip it again. Six must die. Someday, when his language excedes the current level of “cookie” and “poople” I will ask him. “Zack, why don’t you like the number six?”

I bet he has a reason. Zack always has a reason.

Being an Advocate

Zack's favorite toy!It comes naturally to me. If I feel my son needs speaking up for, you bet your ass my mouth will open. My husband avoids confrontation, which is probably why he married me. Opposites attract and all that. Lately, confrontation has been my head title and middle name.

I am extremely stressed out with Zack’s school. His teacher avoids me unless she has really good news. Yesterday, I decided that Zack will not ride his bus anymore and I will be picking him up. I went to the school and his teacher told me “Zack put on his own jacket today!” and then disappeared and I didn’t see her during the rest of my stay at the school. Instead, I spoke with the TA and she agreed that the preschool teacher is overwhelmed and doesn’t know what to do with my son. So, it’s agreed then… Zack does not belong in that woman’s classroom.

With that knowledge, I refuse to sit by and “wait until March for the psychologist to evaluate him.” I have set up a meeting with the principal, called the language pathologist from the other school for recommendation, had our pediatrician send a referal for immediate evaluation to the school, and spoke with the neuropsychologist’s assistant about them sending a referal as well. When I get in to see the principal, I have notes on what is and isn’t helping my son in the preschool program. I am listing the class as “inappropriate for a child with special needs” and requesting an immediate transfer to the full-time class for autism at the other school. I know the teacher in that class and I TRUST her. She’s been on both sides of the table… She teaches children with autism and she has a child on the spectrum herself. That makes all the difference!

Ick, I’d hoped to write every day!

Organic ApplejuiceI am so sorry for my absence! My mother is in town and I haven’t really been on the computer much. But, here’s an update and then I hope to get back to my regular posting. Zack is doing absolutely amazing! His withdrawl symptoms are GONE (knock on wood) and other than his normal screeching when I tell him no about something, he is behaving pretty well too. I’m really happy with him! His language development is on the up and up. We went from a few spontaneous words last week to SO MANY, I’m not able to track how many he uses now! We bought him a tent that we put up in the playroom yesterday because I was told that he might need a private little place to escape to. As soon as he saw it, he grins and says “what’s that?” Words like that just keep popping out of his mouth.

But, I’m having issues with his school again. Zack’s busdriver told me yesterday that his preschool teacher waited until he was strapped down into the bus seat yesterday afternoon and then took a toy from his hand and said “this has to stay here” and walked off the bus. Do you KNOW how much damage that can do to a 3-year-old with autism who has object attachment issues. This is the kind of stuff she just does! The day before that, she called me to pick him up from school because he was throwing a tantrum about the SAME TOY and wouldn’t get on the bus. I told her not to give in and I’d be there in 10 minutes. I’m teaching him to GIVE A TOY UP, not just rip it out of his hands. But when I arrived, she brought him into the office and he was holding the toy she’d been talking about. She says “I give up” and basically walked away. I told her no, she doesn’t and I made him into giving the toy back and then rewarded him with skittles. She looked irritated just being around my son. I hate that he’s not in a class for children with autism… he’s in a special needs preschool and his teacher knows NOTHING about autism.

So, it looks like I have some complaining to do on my son’s behalf.

Where’s my White Flag of Surrender?

Woman ScreamingDay 5. I take it back. Yesterday was NOT the worst day of my life. Today beats it by far. Argh!!!

We woke up early to head to the book store so I could research more about the GFCF diet and autism. I found an incredibly interesting book about the diet, why it works, and how to survive it. Guess what? The book swears that his bad behavior right now is a good thing. It says that his behavior changing like this is a sign that the gluten and casein proteins were somehow affecting his behavior before and once this withdrawl phase ends, we should see some positive results. So, that’s good.

But, Zack’s back to throwing things across the room, screeching, and intentionally breaking my rules. I’m almost afraid to send him to preschool on Monday because he might hurt someone. How long is this withdrawl phase supposed to be? I miss the Zack I had a week ago.

His IEP review is coming up next week and I cannot wait for this meeting. I am going to demand an official diagnosis. The OFFICIAL diagnosis will help us tremendously because I can then get him on the long waiting list for ABA and possibly SSI. Eek. Wish us luck.

Breakfast: Fruity Pebbles w/almond milk, banana
Snack: Smooshed Grape Frutable
Lunch: White rice w/GFCF teriyaki. Didn’t really eat much of that and didn’t want anything to do with meat.
Dinner: Brown rice noodles with Prego sauce and skinless chicken breast, peas
Dessert: I’m trying the peanut butter cookie recipe I posted before tonight!

Once I finish reading the book I mentioned earlier, I will add my recommendation.

One of those Days..

Stressed KittyDay 4. Every mother of a 3-year-old autie knows exactly what I mean when I say “AHHHHHHHHHHHHHHHHHH!!!!!” Woo! Felt good to get that out.

Today sucked. If I can just speak openly and honestly about my feelings this afternoon… I was ready to open my top floor window and jump. Ok, not actually ready to do such a thing but you know what I mean. It was one of those days. You know the type. Two kids… one screeching like a banshee and the other wailing because of the banshee screech while the puppy whimpers to go out but won’t actually go out because of the rain so he’s stuck holding his pee and crying while I’m trying to shove rice cereal in a 5-month-old’s mouth while my 3-year-old is plucking ornaments from the Christmas tree and flinging them at said crying puppy. All the while that this is happening, I’m on the telephone with my father trying to explain how excited I was over another out-of-the-blue-could-be-because-of-gfcf accomplishment this morning.

By the time 11 came, Zack was in his room for an early quiet time, Zander was in his crib STILL FUSSING at me, and Sushi (dog) was in his kennel. I ran into my room and filled the tub with the hottest water I could stand and climbed in to cry for half an hour. Yeah. Supermom, huh?

I guess I know that every mother goes through days like this and the important thing is that I was able to step back from the situation and breathe without losing my temper. After my 30 minute sob session, I pulled my lobster-red body from the hot water, threw on sweats, and went to collect my still fussing baby from his crib. I took him into my room and laid down on the bed and nursed him for 15 minutes until he fell asleep and then went to release my frustrated preschooler from his room.

Boy, was he ever happy to see me! But, that doesn’t mean the day got any easier. It got harder and harder and harder… but because of my hot bath, I felt better able to breathe and keep myself collected until my husband came home from work and I had someone to cry to. I am so happy these days are few and far between lately. They used to happen much more frequently before I started cracking through this communication wall and pulling a few words out of my sweet autie.

Today was our first fully GFCF day! No mistakes, no accidents, no cave ins! Wooooo! Zack had a GFCF waffle with sliced strawberries and honey on it for breakfast. He had the rest of his chocolate almond milk and some grapes and marshmallows for snacktime. Lunch was half of a waffle with peanut butter and honey, peas, Lays chips, and the rest of the grapes. Then, he begged me out of Fritos for a snack. Dinner was skinless chicken with a GFCF honey barbecue dip and some fried potatoes. He didn’t get a dessert because dinner wasn’t until 8. That was our day. I can’t believe we made it through a day GFCF. It wasn’t the healthiest all-food-group-recommendations day but our first step was no effin gluten or casein so I feel accomplished anyway.

We also picked up a few groceries today. I found a GFCF teriyaki at Walmart! La Choy is the brand, I believe. Okay, I lied… my husband actually found it and told me I need to keep it in my bag for our unplanned stops for brown rice and grilled chicken at Teriyaki Madness. We were thrilled! I also picked up some colorful marshmallows, a box of EnviroKids frosted flakes, EnviroKids peanut butter snackbars, all 3 flavors of almond milk, and some totally GFCF vitamins with calcium added! No lactic acid!

It has taken me the better part of a week but I think I’m starting to get this down.