Plans and Expectations while Pregnant with a Child with Autism

Happy Friday, friends! Today here in Wisconsin we were dumped on (again) by Jack Frost and his team. Good thing for my boys, who were thrilled when school was cancelled. Not as good for mom, since her plans for the day got scrapped. But that gets me thinking. How often do our plans actually turn out the way we want them to?

How often does our day fall into place, just as we scripted, exactly how we hoped? And if that uncertainty applies to one day, doesn't it also mean our weeks are uncertain? Our months? Or years? How about our lives?

When I was young, like many young girls I dreamed of having children one day. I collected Flower Girl dolls -- which were a cheaper knockoff of the coveted Cabbage Patch Kid dolls! I saved my own money to buy them and named them, taking care of them as if they were real. I was 11 or 12 at my peak of interest in dolls. I also loved real babies and did lots of babysitting. I was told I was good with children and knew how to relate to them.

I longed to be a mom. I knew I was too young, but all through high school I fantasized about it and could hardly wait. I imagined my babies -- always girls (LOL) -- snuggling and laughing with me in endless bliss. I imagined I would dress them in adorable outfits, strolling them through malls and parks -- where strangers couldn't help but stop us to say, "How cute!"

That's how I imagined parenthood! I can see now that I put a heavy burden on my future children to bring me joy and attention.

I'm grateful that God had better plans for me, and that my first baby didn't come until I finished college and got married. Almost immediately after our May 1997 wedding, we decided to start trying. It didn't even take a month. My plans were falling right into place!

I wrote a journal during this first pregnancy. When I read through it now, I notice an underlying theme of "me, me, me." The pregnancy was all about me, and I dreamed of how a baby would enhance my life. But pregnancy also opened up a spiritual window for me: I started praying again after having been "agnostic" for years. I knew something miraculous had happened to me when I got pregnant. There wasn't a child, and then there was!

So although this new-found faith was a positive thing, I placed my little miracle baby up on a pedestal. My expectations for motherhood were even greater now -- if just being pregnant could change me so much, imagine when the baby is born!

From my pregnancy journal: "I am a mommy now. I'm somebody's mommy. There is a person growing inside me who didn't exist 100 days ago. I have a child, and from the moment we conceived this child, I became so much more important than I ever was before. We are bonded forever."

I became consumed with pregnancy and delivery, devouring books and journaling obsessively. Instead of Lamaze, Todd and I took a class called The Bradley Method of Natural Childbirth. I didn't think too much about being a mother; I "knew" that would just come naturally.

Four months into the pregnancy, I had a little scare with cramps and spotting. When I went to the clinic, they did an ultrasound and the baby looked fine. Todd and I were thrilled to see our real, little person (who had his legs crossed so we didn't know he was a boy)!




In my journal I wrote: "I'm so grateful that nothing was wrong with our baby. This baby has already brought so much happiness to our life -- and we can't wait to meet Noah or Jasmine face-to-face."

Expectations. Plans. A vision. A dream.

Please check back tomorrow for Part 2 of my story.

Blessings,
René, The Autism Mom

Follow my blog: http://theautismmom.blogspot.com/
http://www.smitsmarketinggroup.com/

Merry Christmas from my family to yours! This is the card we're e-mailing this year instead of mailing paper cards.

Note: There are 3 pages to this card. Click the arrow in the bottom right corner to turn the pages.

Make a Smilebox greeting

Why I am Scared of Crying, by Noah X. Smits, age 10

Guest Writer:

Noah X. Smits

a.k.a. "Smitty" or "Xavier"

age 10 1/2

Forward by his mom, Rene Smits: Noah was born terrified of the sound of crying. As a baby, he cried every time another baby cried. As a toddler, he cried AND attempted to push over the crying child. As a preschooler, he cried AND yelled at the crying child. As he got older, he cried and yelled at the crying child's parents to "shut her up."

Now at nearly 11 years old, he is still terrified of the sound of crying. It can send him instantly into tears. He also gets angry at the sound, as if he is being personally attacked. Visits to stores and restaurants (and especially DisneyWorld) can be very stressful.

Now... for the first time anywhere, here's what goes through Noah's mind, in his own words:

When I hear crying, I go into an immediate panic. I find it hard to control myself. I get tense and my brain spins. I feel stiff and weird. I don't know why. I can barely control myself. My fear is indescribable. Since my brain is spinning, it begins panicking and I can barely hold in this fear.

I get hot, anxious and nervous. I forget all I know. I think it's like being little again maybe. The crying gets loud and rings in my ears. All other noise gets softer. Crying gets louder and louder and sounds a bit like an ear-piercing fire alarm. After the crying stops, it takes awhile for my head to stop panicking and spinning, and for my ears to stop being a fire alarm.

When the cry happens, I can barely talk and my senses get less functioning - except hearing, which takes over me. Crying controls. Meanwhile, an amazing discomfort overcomes me. I feel small, scared, shy, useless. My ears continue to ring for about 10 minutes later. I am weird and tense for about 30 more minutes.

This crying has taken over my life and ruined it, even if it's an adult or a cartoon. In the next 30 minutes, my brain thinks everything I hear is crying. It goes into Stage 1 Panic Spin mode. Even baby laughing can put me in full "AH!" mode.

___________________________________________

It's Rene again. Noah has wholeheartedly agreed to help me with this blog. People have told him that he is skilled at describing how he feels and thinks. He believes it might be helpful to share these writings with other moms and kids dealing with autism. Maybe your son or daughter is feeling similarly, but isn't as able to articulate it. We hope in some way our site can help you.

Blessings,

Rene, The Autism Mom

Follow my blog: http://TheAutismMom.blogspot.com

http://www.smitsmarketinggroup.com/

Cameron critques my blog post

I showed Cameron the list of positives about himself, and he critiqued it for me. He didn't like the photo I chose, so I'm posting one he approved. (I like the photo I posted, so I'm not removing it.)

He also wished I had written in blue font, so I'm writing this in blue. There. :)

I asked him if he wanted to read Noah's list, but he said he was afraid it would be better than his, so he didn't want to.

Blessings,

Rene, The Autism Mom

Follow my blog: http://TheAutismMom.blogspot.com/

Cameron, age 7, PDD-NOS: My List of Positives

Note: Click on the title (above) to be redirected to a website that defines PDD-NOS.

In my last post, I suggested you make a list of your child's positives. You can share them here or keep them to yourself. I promised to share my boys' lists. (These are in totally random order.)

Cameron

A bit about Cameron before I make my list: He is almost 8 years old and was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) when he was 3. He was a very mellow baby and toddler who hardly cried, even though he had severe reflux/GERD. As the younger brother of Noah, who was diagnosed with Asperger's Syndrome, we thought Cameron was a neurotypical child. That is, until his first day of preschool, when the teacher suggested he be screened for autism! The in-home therapists working with Noah at the time also recognized some signs of autism in Cam. He has continued to become more and more obviously inflicted with autism.

The Positives!

1. He has a contagious laugh. We say he has "a laugh that could melt a snowman."
2. He has a cute cleft chin like his dad.
3. He has beautiful blue eyes -- everyone else in our family has green.
4. He sleeps with a yellow bear called Lemon Poppyseed, which is nicknamed "Poppy."
5. He has an awesome memory, especially associated with scents.
6. He is a very good reader. (He learned to read at around 4 1/2.)
7. He loves to show his parents things he makes.
8. He is an excellent train-layout builder.
9. He likes to eat "The Cameron Sandwich," which is wheat bread with cheese, pepperoni, pickles, lettuce and mustard.
10. He loves his dog and is learning to play with him.
11. He enjoys playing outdoors in any season.
12. He's a "tough kid" who doesn't cry much when he is hurt or sick.
13. He has a lot of energy.
14. When he's really happy or excited, he does this hop-dance move.
15. He asks a lot of questions about what things are, how things work, why things are the way they are, etc.
16. He likes to find out what a word means and then practice using it in his everyday speech. Sometimes it takes some practice to use it correctly, which can be so cute. For example, he thought the word "likewise" meant "yes," so he would answer your yes/no question that way.
17. He is very expressive about the things he likes. He likes to talk to people a lot.
18. He still climbs in bed with his mom and dad sometimes.
19. He likes to decorate our house, especially at Christmas time. He also likes to arrange the items in his bedroom.
20. He likes to go shopping sometimes with me!
21. He has started taking better care of his teeth.
22. He asks me for permission before playing Wii or computer games.
23. He is excellent at Nintendo Wii Cars Mater-national (racing game), which he does standing up and jumping around -- great exercise!
24. He loves to look through the scrapbooks I have made.
25. He loves to watch our home movies.
26. He has started talking about his school friends, and his teachers say he is getting better at playing with them.
27. Sometimes in public he is able to ignore noises he doesn't like.
28. He loves spending weekends at his grandma and grandpa's.
29. He has an innocent, naive quality about him that most 7-year-olds have already outgrown. Since he's my youngest and last child, I am enjoying his little-kid qualities so much.
30. He is really funny. He loves to make people laugh.
31. He doesn't chew his fingertips anymore, thank God. (They used to bleed.)
32. During our family Bible studies, he reads the Bible aloud and has clear, excellent diction.
33. He likes to have one-on-one days with me, and he'll say, "Mom, I'm enjoying this date we're having."
34. He transitioned pretty well to a new school this year, including a new support teacher after having the same one for 3 years.

There's more, but that's good for now!

Blessings,
Rene, The Autism Mom

Follow my blog: http://TheAutismMom.blogspot.com/
http://www.smitsmarketinggroup.com/

Noah, age 10, Asperger's Syndrome: My List of Positives

Note: Click on the title (above) to be redirected to a website that defines Asperger's Syndrome.


In my last post, I suggested you make a list of your child's positives. You can share them here or keep them to yourself. I promised to share my boys' lists. (These are in totally random order.)

Noah

Before I start, I want to tell you a little about Noah. He is almost 11 and was diagnosed with Asperger's Syndrome at age 3. He used to be a very difficult, frustrating child. He had violent tantrums, was very set in his ways, didn't maintain much eye contact, hated other children, and didn't bond much with people. He has come SO far that we can hardly believe it.

1. He has big, beautiful eyes and long lashes.

2. He has cheeks like apples -- in our family we call them "smile balls."

3. He has a hilarious laugh.

4. He has an amazing memory.

5. He is a creative writer.

6. Academics come easily to him.

7. He won his school's "Geography Bee" in 5th grade. He was 2nd place the year before.

8. He does well in school even though he is a year younger than his classmates.

9. He is learning to make friends at school.

10. He no longer needs autism therapy.

11. He is super-skilled at Nintendo Wii, especially MLB PowerPros (baseball).

12. He enjoys reading -- a skill he picked up "just like that" when he was 2.

13. He loves his younger brother.

14. He recently became a sports fan, and now he and his dad have a huge connection through sports. Their favorite teams are the Green Bay Packers, the Milwaukee Brewers and the Florida Gators.

15. He cares about how his bedroom looks, and he arranges his belongings the way he likes them.

16. He empties the dishwasher when we ask.

17. He is in karate, and is currently a brown-stripe belt. He'll soon start working toward his black belt.

18. He never complains about going to church and he has accepted Jesus as his personal savior!

19. He gets his homework done.

20. He is very detail-oriented about some things.

21. He gets deeply into projects.

22. He loves to collect baseball cards, sort them and look them up in his books to see how much they are worth.

23. He loves his dog and plays with him.

24. He isn't very picky about food.

25. He eats his vegetables and vitamins.

26. He doesn't need reminders anymore to use the toilet.

27. He has learned how to carry on a telephone conversation.

28. He gets embarrassed when he acts inappropriately in public. (Yes, this is a positive! He didn't used to care what anyone thought, and we rejoiced when he started being concerned about this. We knew it was a good sign that he could take another person's perspective.)

29. He now uses pronouns properly and has a pretty typical pattern of speech. He no longer needs speech and language therapy.

30. He's become much more physically coordinated.

31. He enjoys talking about his special interests, but usually realizes when he's been talking too long. (He takes other people's feelings into consideration.)

32. He has learned to not blurt out in class, and is able to cope with not being called on when his hand is raised.

33. He no longer insists on being first. He used to have to be first for everything, including going through doorways.

34. He enjoys taking photos and home movies. He'll even make up his own "Mr. Bill" or "Nativity" stories and record them.

35. He now holds his pencil the "typical" way and has nice handwriting.

36. When he's sick, he is cooperative about taking medicine. He's also very polite and sweet when he's sick, for some reason!

I will add more when I think of them!

Blessings,

Rene, The Autism Mom

Follow my blog: http://TheAutismMom.blogspot.com/

http://www.smitsmarketinggroup.com/

Encouragement for moms who feel guilty about their child's autism

Good day to my friends! I am excited you're here. I want to encourage you today. Many parents (especially moms) feel guilty about their child's condition. If you can let go of that guilt, your entire family will benefit.

Please take a few minutes today to work through this post with me. You might want to grab your journal or a pen and paper.

Thoughts after diagnosis

When you first found out your child had a type of autism, what ran through your mind? Jot down your initial thoughts.

Some of my thoughts were:
"This isn't what I signed up for!"
"This isn't fair!"
"I don't know if I can handle this."
"Will he ever be 'normal?'"
"Will he ever have friends?"
"How will he get through school?"
"How will we survive this?"

Were you like me? Did you feel guilty about your child's diagnosis? My most heartwrenching thoughts were guilt-ridden:
"What did I do wrong?"
"Did I do something while pregnant that caused this?"
"Did I pass along 'bad genes?'"

My head was spinning with many questions when my sons were first diagnosed, and among them were questions about my own guilt. How could I not feel that I did something wrong, especially when I have two children on the spectrum? Sadly, there have been moments when I wondered if I should have had children at all.

My boys, ages 10 and 7, were each diagnosed at age 3. I've had some time to process my initial reactions. But acceptance doesn't come easily, and feelings of guilt creep up on me from time to time. Sometimes I feel fine about my kids' diagnoses and other times I find myself stuck in the grief cycle again.

The Grief Cycle

Where are you in the grief cycle? The typical stages are:

Denial:
Example - "My child is fine. He'll catch up."; "This can't be happening, not to my child!"
Anger:
Example - "Why my child? It's not fair!" "NO! NO! How can this happen!"
Bargaining:
Example - "Just let my child overcome this."; "I'll do anything, God. Can't you take it away?"
Depression:
Example - "I'm so sad, why bother with anything?"; "Life has not turned out how I wanted . . . What's the point?"
Acceptance:
Example - "It's going to be OK."; "I can't fight it, I may as well accept it."

The hard truth is, as a parent of a child with autism, you might always be somewhere in the grief cycle. When your child accomplishes something, you celebrate. Next week when your child takes a step backward, you mourn. This roller coaster can be heart-wrenching. But you need not be guilt-stricken.

You are not guilty

This isn't your fault. There's nothing you did -- or didn't do -- that caused your child's condition. What if God did this on purpose? Have you considered that He might have incredible plans for your child -- and your entire family? That God can bring GOOD -- even AWESOME -- things out of a seemingly bad situation? I've seen Him in action, and I know this is true.

If you have to be in the grief cycle, why not strive to be in the "Acceptance" stage? Wouldn't that be the best place to live? Write down all the positive things about your child -- every little thing until your hand hurts from writing! Keep this list handy. These are the things you want to focus on because these things -- along with your child's diagnosis -- make your child who he or she is. (I will share my own lists in a separate post.)

Stop asking "Why?"

If you knew WHY your child has autism, would this change WHO your child is? No. Your child is precious, beautiful, unique and special. I pray you can let go of the "WHYs" and allow yourself to move on. Move toward accepting your perfectly imperfect family -- and just love them (including yourself).

Blessings,
Rene, The Autism Mom

Follow my blog: http://TheAutismMom.blogspot.com/
http://www.smitsmarketinggroup.com/

Thank God for Grandma and Grandpa

Well, if you read my post earlier today, you know my boys are spending the weekend with Grandma and Grandpa. I feel grateful that the grandfolks are on Facebook, because they've already posted photos of their day!

Somehow I grew up in Wisconsin without learning to enjoy the snow. I basically hibernate all winter (which can last up to 6 months). But my outdoorsy mom and stepdad snowshoe, ski, sled, and make snow angels every winter day! Today, they took Noah and Cameron sledding and then they all went and picked out a cut-your-own Christmas tree.

Thank God for Grandma and Grandpa!

Rene, The Autism Mom

Follow my blog: http://TheAutismMom.blogspot.com/ http://www.smitsmarketinggroup.com/

My sons, their autism, and why I love them anyway

Well, this weekend is one of those rare, splendid weekends when my boys are with their grandparents. If you aren't already linked to your children's grandparents, I suggest you immediately make them your Facebook or MySpace friends and also babysitters. I don't know what I'd do without my mom and stepdad!

And of course, I was missing the boys this morning when I woke up. On a normal Saturday morning, 7-year-old Cameron would join us in our king-sized bed with his Poppy and his thumb. "Poppy" is his ragged, stuffed yellow bear. His thumb is something we don't necessarily want in his mouth, but he does. "When I see soft things, it makes me suck my thumb," Cameron explains.

See, Cameron is like many kids with high-functioning autism (officially PDD-NOS): he is an extreme kid. He is part little kid, part old man. He will ask the most innocent, naive question one minute, and offer deep, insightful theories the next. Some days, even the tiniest disappointment will cause him to throw his 65-pound frame to the floor in a tantrum. Other days, when we're prepared for a strong reaction, he just lets disappointments slide off him without incident. We never know which kid we're dealing with.

My other son, Noah/Xavier/Smitty (he has name issues), 10 years old, is just as extreme. His diagnosis is Asperger's Syndrome. That diagnosis is marked by advanced intelligence but delayed social skills. He is a living example of how two extremes can coexist in one body. Even when he was 2 years old and taught himself to read, I sometimes forgot he was only 2 and talked to him like he was 10. Now that he IS 10, I sometimes forget he's only 10 and I talk to him like he's 20. But he also can still ACT like he's 2! I'm serious.

So this morning when my husband Todd and I woke up, we lay in bed and talked about our boys. We thought of the endearing qualities about them instead of the annoying ones. Like how Cameron has a pure innocence about him that most 7-year-olds no longer have. Sure, I'd like for him to be cognitively at level with his classmates, but that isn't the case. So I look for the good in it: his naivety, his curious questions, his struggle to choose the right words... he's adorable to me. My heart does little flips for him all the time.

Noah, being a tweenager or preteen or whatever, doesn't normally crawl in bed with us anymore. And although he likes to do many things alone -- Nintendo Wii, computer games, reading, sorting baseball cards -- there are times when we truly connect. He'll step outside his world of high interests and ask me about MY world. He'll show interest in my scrapbooking, my favorite computer game, a computer project or something. And I will HUG him.

Just yesterday, on the drive to Grandma's, Noah expressed his strong support of my being The Autism Mom. He was really excited about it! As we brainstormed together, we came up with a related concept -- a forum called The Autism Kids, where kids could post their photos, writings, artwork, etc., and find other kids with similar interests. I am going to get started on this project in between all my other projects. I am excited! I welcome your input!

Blessings,
Rene, The Autism Mom
Follow my blog: http://TheAutismMom.blogspot.com/
http://www.smitsmarketinggroup.com/

The Autism Mom wants to be your friend

Welcome to my blogspot! I don't know you yet, but I feel I do. I am René, The Autism Mom, and I want to be your friend. Why? Because you need one. When your child is diagnosed with autism -- wherever he or she falls on the spectrum -- you go through a real mourning period. You need friends who understand, but you may not know anyone else with an autistic child.

That's why I'm here. I've been where you are. I'm STILL where you are. The difference is I am a decade into the journey and I am ready to share what I've learned. My boys are both on that colorful autism spectrum. Noah (who suddenly prefers his middle name "Xavier" but we're having a hard time switching) is almost 11 and Cameron (he likes "Camro") is almost 8.

These boys... where to start? They are the most colorful, multi-layered, interesting, creative, intelligent, curious, puzzling children I've ever met! I hope you will enjoy getting to know my family through this blog, but even more, I hope you will find comraderie and support here.

Since I am new to blogging, I hope you will be patient with me as I figure this thing out. I hope to bring to the table lots of humor, interesting writing, resources, interviews with real autism moms, gosh -- who knows what God has in store for this site.

So welcome! Please join me in this journey. We need each other! God bless you & your families this Christmas!

René, The Autism Mom

Follow my blog: http://TheAutismMom.blogspot.com/
http://www.smitsmarketinggroup.com/