LIFE IS A SPECTRUM

autism_ribbon

Cheryl of Little Bit Quirky is my guest blogger today, and I'm delighted to say that she's also my friend. One of the many amazing, inspiring, hilarious writers I've met online, Cheryl is also the mother of a beautiful six-year-old girl with Asperger's. As Cheryl's award-winning blog will show you, an autism spectrum diagnosis in the family doesn't mean you stop laughing, loving and finding joy in every day. It also doesn't spare you many of the same frustrations that every parent faces -- plus, admittedly, a few quirky extras.

She shares a few very funny memories of life with her daughter in this week's Special Needs Blog Hop, takes us on an interesting shopping trip to Toys R Us in Is The Poop Real, and she speaks, heart-felt, about the challenges that many of us face with choosing to be mothers later in life at D is For Dinosaur. And today, as you'll read below, she talks about an important, sobering issue that affects all mothers everywhere.

Another member of the Spring Chicken Tribe of special needs moms in The SITS Girls network, Cheryl is also the featured blogger at SITS today! Check out her well-deserved spotlight here! And don't forget to stop by Little Bit Quirky and say, "Hi!" I'll bet you stick around and keep reading ...

Take it away, Cheryl ...

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Baby Blues and More

depression

Know someone with an autistic child? This week, ask them how they're doing.

I waited so long to have a baby! First, it took me forever to fall in love with the right guy and get married. Because of this, I didn't have my daughter until I was 38 years old.

Considering that I had never changed a diaper before having my daughter, I had no idea what I was getting myself into! I found myself to be incredibly depressed after the birth. I did have some problems at the end of my pregnancy and had to have my baby over 4 weeks early to prevent her from being stillborn (we got incredibly lucky on that one). Because of this, my daughter had to spend two weeks in the NICU. It was so hard leaving the hospital without her! In addition to all this, my mom was having health problems and had a series of surgeries scheduled, so she wasn't able to come out to help me with the baby.

After having the baby, I found myself crying all the time. My husband encouraged my OB to prescribe me anti-depressants, which I initially didn't think were necessary. I didn't have a firm grasp on knowing how much of my depression was due to a case of the baby blues and how much of it was due to my mother's health problems. We did some research on the medication, and it didn't seem like the right thing to do. Because my daughter was born a little early, she had a hard time staying awake for feedings, which is a big reason why she had to be in the NICU. A lot of her feedings had to be delivered via a feeding tube. A side effect of the anti-depressants was drowsiness for the newborn. This was something I didn't want to increase.

I couldn't understand why I wasn't happy. It was a miracle that my daughter wasn't stillborn. Having a baby was something I wanted for so many years! Yet, I felt like the world's most inept mother. Nothing seemed to come easily! When breast-feeding finally seemed to be working, my daughter became extremely bloated and started projectile vomiting. It turned out that she was unable to digest the proteins in my breast milk, so I had to follow an elimination diet. I wasn't allowed to eat anything containing dairy, soy, nuts, peanuts, eggs, fish, and shellfish. When my daughter was about 8 weeks old, my mother passed away. I was a mess!

What helped me a lot was a phone call. A woman I hardly knew called me to make sure the baby blues weren't getting the better of me. She was a wife of a coworker of my husband, and she was a family therapist. Initially, I had assumed my husband asked her to call me since I had gotten so crazy. She assured me he didn't. She called me because the same thing had happened to her, and she wanted to help me. In fact, she was so moved by her own experiences that she pursued her Master's degree in counseling because of it. She did her thesis on older woman becoming moms. Out of her universe of over 30 women who were over 30 years of age, every single one of them felt exactly as we had: inept and the world's worse mother. Women who have excelled in the workplace and had so much independence have a harder time adjusting to motherhood. We're not use to being so out of control of our environment. Add in the lack of sleep and the hormones and look out!

After having this phone conversation, I felt the great weight of depression leaving me! All I needed to hear was that I was normal--I was not alone in feeling the way I did. I honestly was on the verge of going on medication! All I needed to hear were those simple words--"You are not alone!"

Not long after that, Brooke Shields came out with her book on postpartum depression, "Down Came the Rain." I didn't read the book, but I remember being so thankful that this topic was out in the public domain! I'm sure it helped many women understand that they weren't alone either! Maybe this helped some women to avoid medication, like me! Maybe it encouraged other women to get medication who truly needed it! I think it was great that Brooke Shields took a subject that was taboo and got people talking about it! Fantastic!

This summer, unfortunately, has seen a few cases of mothers murdering their children with autism. It has raised the ire of mothers on the parenting boards screaming for justice for the poor murdered children. I'm sure there will be justice. But to me, the real story is what drove these women to commit these horrible acts of violence. I really think there are a lot of parallels with postpartum depression. True, there are no fluctuating hormones, but there's also no end in sight for these mothers and other mothers raising children with severe autism. I used to attend a support group for mothers of children with special needs. I heard stories of how they had to change diapers and shower their 13 year-old boys. How they had to deal with their children hitting and biting them. How they had to deal with their children never being able to talk--never being able to say, "I love you." How their children had endless tantrums because the world was just too light or too noisy for them. How they had to deal with decreasing state budgets that meant less respite support. I honestly don't know how these women managed. It was heart-breaking to me.

My daughter is extremely high-functioning. We have no doubt that she'll be placed in gifted classes and will attend college someday. She's capable of having friendships with her typical peers. We even have hopes that over time, she'll be so high-functioning that she won't be considered to be on the spectrum anymore. Nevertheless, I had to deal with my own depression at times. This was mostly an issue before we had her diagnosed and had interventions like behavior therapy that helped her so much. It was hard dealing with her tantrums. She'd cry if I made a left turn while driving, but she wanted me to make a right turn. She had endless tantrums over weird, mundane things. It was really hard to cope.

What do mothers do when their children show no sign of progress? What supports are in place to help them? Apparently, more needs to be done. Oh yes, we can describe the mothers who kill as evil and horrible, but does this prevent other cases from happening? I think we need to come up with ways to help women before problems begin.

In my case, I've been impressed that every single interventionist that has been through my door has pulled me aside at some point and asked me how I'm handling the stress of the situation. They've all stated the importance of "me time." Because my daughter has done so well, I've found the stress and depression quickly went away as well. I'm lucky! Regarding the mothers who've committed murder, I can't help but wonder if anyone had taken the time to ask them how they were doing and provided them the help they needed before they murdered their children. Something tells me they didn't have any kind of support--any kind of safety net to help them out. That's terrible, and of course, the ultimate victims were their children.

This shouldn't happen in our society.

Reader Comments

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What a heartfelt post! Thanks for presenting the other side of the story in such a clear way. Often times we rush to judgment on people without taking any thought about what drove them to that point.

The miracle of blogging

I think one of the greatest things blogging can do is allow people to be honest about pain and struggles about which people used to keep quiet. Postpartum depression is a primary example. Reading one woman stand up and say, "I felt it. I got through it. I understand it and I'm here for you," might just be the message of support that one person in crisis needs to hear.

Thank you again, Cheryl for such a moving and articulate post.

Great post Cheryl! I'm sure at the time you wondered why you were feeling as you did, but looking back how could you not feel overwhelmed with emotion? I can't imagine losing a mother in the midst of everything else that you were dealing with. I love the message of support!

So true...

Cheryl...my hat goes off to you for talking about something that a lot of people don't even take the time to think about! There's the guilt over NOT feeling right, and NOT being the kind of mom we want to be, and NOT being the kind of wife we'd like to be, and NOT being the overall person we know that we CAN be..... it becomes like a vicious circle when we realize all of the responsibilities that pile up before us need to be addressed regardless of what kind of a day we're having.
While I didn't suffer postpartum depression, I certainly went through the post-adoption blues....and it was hard to describe to people WHY I was always constantly feeling tired, defeated and overwhelmed.

I also wonder just how some moms can do it while maintaining their sanity. Your comment about supporting other moms is absolutely crucial. Unfortunately I find that many women (yes...other moms) have a tendency to want to tell us what we "should" do.....somehow if we just listen to the advice of these other folks our problems would miraculously disappear (....yeah, they have no idea how to live with our kiddo or what we're going through!) Part of providing support entails embracing of the other person's reality even though we may not understand it entirely.

Chris

Great post! I love it when women are so open and honest about their mothering experiences. Only through total honesty are we able to help other mothers, just like you said, feel normal!

I too, had some PPD. It was hard to tell if it was situational or a chemical imbalance. My daughter had some physical problems that made it impossible for her to breastfeed. I felt like the rug had been pulled out from underneath me. While pregnant, it never occurred to me that there are some breastfeeding problems that are just not "fixable". Once I realized that a death had occurred- the death of having a normal breastfeeding relationship with my daughter, and then started treated the experience like a death, i.e. giving it the full mourning experience (instead of saying things to myself like, "she is getting your milk!" what's the big deal?!" she's healthy, that's all that matters!), did I start to feel better.

Great post, Cheryl. Isn't it amazing how much of an encouragement it can be to have someone take two minutes to ask, "How are you doing?" Especially when they ask in a way that shows they want to hear your answer. The REAL one...not just the typical "Fine" response. You've encouraged me to be that person to someone else today. =)

Well Said!

Cheryl, this was so well written! I had postpartum depression so terribly after my oldest was born...it was horrifying. I felt like I just couldn't do anything right, I was crying all the time, feeling angry at my husband for no apparent reason. It got better pretty quickly, thankfully, only to rear its ugly head around the time my boys were diagnosed. I definitely think parents dealing with autism or any other special needs have high stress, and the support we give each other is very important.

Baby Blues and More

Cheryl, you've made an excellent point about the stress that some parents have from dealing with their autistic child. There is nothing more unnatural than a woman killing a child, especially a mother killing her own child. So, that sad act in itself certainly demands exploring to hopefully prevent anything similar from ever happening again. I'm glad to know that you have survived tremendous challenges and have gotten to the point of experiencing joy in your life. Keep up the good work of being a wonderful mother!

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I thought I was turning 40 this week. That's how stressed out I've been; I lost a year.

Mandi38Birthday

I'm actually going to be 39 on Friday. I still get excited about my birthday. Dave calls it "Mandi Awareness Month," because I start reminding him well in advance of the big day and make it very clear what my expectations are: a birthday card made by the kids, a cake with candles that Billy can blow out, a second DVR for our bedroom, and a trip to some place with daily maid service and a heated pool.

But this year has been a little different. Or at least, this month has been a little different. It's been tougher, more stressful.

I want to be honest about the stress and the hard times, because I always write about our breakthroughs, our happy moments and our family's abundant joy. Those moments are worth writing about. But so are the hard times.

I recently read a post on one of the autism support group message boards in which a parents said something like, "What am I doing wrong? I read about all this great progress that other parents have made with their autistic kids and I actually resent them. I have a terrible attitude. I feel depressed. Most of the time I don't know how I'm going to get through the day. I think I have the worst attitude of any parent on here. Sometimes I resent my own child."

Sometimes we all do. And I want to apologize right now if I've ever given anyone the impression that I don't have those days. I do.

I have days when I don't know how I'm going to get through it. I have days when I feel a LOT older than 40. I have days when I am so angry at all these parents who have it so easy ... even though I know in my head and my heart that nobody has it easy. We all have those days.

The past couple of weeks have been hard because Billy seems so angry at me more of the time. He's angry about being asked to go to the bathroom. He's angry about getting dressed. He's angry about getting into the car. One night --or morning, I should say, because it was 3 a.m. -- he was angry about it being dark outside. He pulled the curtain back, looked out the window at the darkness and screamed, "No more night! Good morning! Good morning!"

I'm flattered that he thinks I have control over that, but I was really friggin' tired and not seeing the funny side.

An OT and a couple of parents of autistic kids have all told me that frequently a period of bad behavior precedes a big leap in cognitive ability: the one step back, two steps forward theory. All I can say is Billy must be getting ready to do calculus, if there's any truth to this theory.

We spend so much time trying to understand our kids' emotions, validating their feelings, teaching them how to handle stress and fear and anger. And meanwhile, we beat ourselves up and invalidate any negative emotions we might have as parents.

It's okay to feel like you don't have a handle on things. Frankly, I don't trust anyone who claims to have it all together. But even in the midst of this stress and anger and even depression, we have to keep going. We're parents and we don't get paid vacations. That being said, when I'm having a really hard day, here are a few things that help me center myself again:

1. Asking for help: It sounds so simple it's stupid, but you MUST have someone to help you sometimes. If you aren't lucky enough to have close family around, reach out to the autism community, to your church, to your closest friends, and create a network of moms on which you can lean. Be honest with them, and take the step of actually calling on them, even if it's just to take one hour to yourself.

2. Support groups: Part of the problem with having kids, is that you often don't have time to join the groups who can support you. Luckily, there are a lot of great online support groups now. The members may not be in your back yard, but they can certainly commiserate and very often, they have very good ideas for tackling problems. I am a regular contributor on Circle of Moms Autism/Asperger's Support Group, Autism/PDD Message Board, and the Floortimers Yahoo Users group. There's also a Special Needs Kids section of MomsLikeMe.com.

3. Exercise: Nothing relieves my stress like a long walk. I put the kids in the stroller, where they're safe and sound and strapped in, give them each a cup of juice, pop in my earbuds and actually listen to a book while we walk for an hour. A side effect is that I'm in better shape than I've been in a long time. I truly hate every other form of exercise, but I like to walk. And I like to read.

4. Clear the schedule: When all else fails, when you're overwhelmed and your kids are melting down and you're behind on 45 different projects and you don't know how you're going to get it all done, cancel some stuff. This was one of the hardest things for me to learn to do. But sometimes an afternoon free of appointments and car rides and transitions is just what you and your kids need. People will understand.

5. Clean something. I organize areas of the house when I get stressed: closets, drawers, shelves. I've known people who tackled their ovens, bathrooms or ironing whenever they got overwhelmed. Parenting an autistic child is so full of complicated problems and questions with no easy answers; those questions, and the answers, change from day to day. Sometimes it feels really good to have a problem as simple as a messy drawer to deal with: easy to solve, you know when you're done, and it's easy to see that you've made progress. Parenting is never that simple.

Reader Comments

Parenting isn't easy on control freaks. I thought that, like most projects I tackle in life, careful study of the right books would fully equip me for pregnancy and motherhood. Whatever. Let's just say that What to Expect in the Toddler Years should contain the subtitle "In an Ideal World." (The Girlfriend's Guide books may not have prepared me any better, but they at least made me laugh. Hard.)

I like to carefully plan out and schedule my day, make to-do lists - for myself and Dave (oh yeah, he LOVES that) -- prioritize said list and then mark off each item with color-coded highlighters. I love highlighters.

My children like to put handfuls of mac-n-cheese in their pockets, develop strange rashes and get various parts of their bodies stuck in various places in the house five minutes before we need to pull out of the driveway to be somewhere. And those are the easy upsets to deal with. The most terrifying thing about parenthood, the thing I was totally unprepared for, is how vulnerable it makes you feel. Suddenly, the source of all your greatest joy and pain is walking around the world, running into things and people and you can't stop it or control it. I suppose I could wrap them up like mummies and feed them like baby birds but that's generally frowned upon by the best parenting books.

I realized fairly early on that I could either loosen the reins a bit or become a heavy drinker. Instead, when things veer off the rails, I organize.

My favorite tools: Velcro, Ziploc bags, a black Sharpie pen, strips of sticky magnets and index cards. During the long road to Billy's autism diagnosis, I became obsessed with organizing his toys correctly, as though the perfect playroom could "fix" him. I would stay awake at night debating whether the baby doll and bottle I bought for him (to practice imaginative play) should be in the "housekeeping" area, with the play kitchen, or next to the bikes, since his favorite thing to do with the baby doll was run over it with his Big Wheel.

I took a picture of every toy and labeled its position in the toy room with a Velcro-ed picture, so that he could practice returning things to the right place. I used those same Velcro-ed pictures on his picture schedule, a tool that helped teach him about his day and how to make choices.

My organization stress response isn't limited to toys, though. The week Billy started school I was so worried that I labeled every shelf in the kitchen cabinets with index cards; then I get blind with momentary rage if I open a cabinet and Dave has put a plate on the clearly marked "over-sized bowls" shelf. On the rare occasions that Dave and I argue, I reorganize his stuff. I might as well; if he's looking for something, he always asks me where it is, so it might as well be somewhere I put it.

He has said that he's afraid one day he's going to wake up and find himself sealed in a Ziploc bag labeled "Daddy" and Velcro-ed to the wall. And I told him that if I were stressed enough to do that, the bag might not be labeled "Daddy."

I'm probably the worst possible parent to deal with my son's autism; at least that's how it feels most days. It seems that no answers are clear-cut, no treatment is without debate, and the experts can't even decide how best to organize the diagnoses and treatments. (For more on the current debate about the American Psychiatric Association's recommendations, click here.)

Most medical doctors will recommend drugs and pooh-pooh the idea of more holistic approaches, such as the dietary interventions. Most parents, therapists and doctors who are very committed to biomedical (diet, supplements, etc.) interventions refuse to believe that every child can't be helped by those treatments. For every non-invasive therapy we try -- therapeutic listening, brushing, supplements, weighted vests, you name it -- there's a website or anonymous blogger somewhere saying how stupid it is.

I have poured over long lists of symptoms of everything from yeast sensitivity to sensory processing disorder. Some symptoms Billy seems to have, some he doesn't. Some seem to match the symptoms of five or six other allergies or disorders. Many of them instruct me to "watch his behavior" after eating certain things. Well, the same behavior that you attribute to wheat allergy could also be explained away by the fact he didn't nap today, his sister got chewed carrots on his Lightning McQueen car, and I won't let him watch TV. In short, controlling his environment and attributing behavior to one particular thing is next to impossible. He's a three-year-old, not a lab rat.

I thought when we started this process that if I found the right expert, I would get a clear-cut prescription and that would be that. Unfortunately, I found too many experts in everything except my child. It turns out that Dave and I (and my parents) are the only ones truly expert in Billy, what works for him and what doesn't. And even that list changes from one week to the next.

It drives me to distraction. But when the stress gets to be too much, I can always go organize Dave's closet.

Reader Comments

LOVE IT!

LOVE this. I have a lot of friends obsessive about organization but I don't know anyone that picture coded the playroom. I know one friend in particular that would be all over that idea. A pediatrician once told me during a visit that everyone has a neurosis of some kind. I was expressing concern over a bout of obsessive hand washing that Molly was going through--5 times during meals. He looked at me and said, "well, everyone is obsessive, compulsive, or neurotic in some way." Yes, I agreed, but isn't this unusual behavior? He asked, "What do you and your husband do?" I told him we were both lawyers. All he said was, "Case closed. She's doomed."

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