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 ...

------------------------------

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

Security text:*

Enter both words below, with or without a space.
The letters are not case-sensitive.
Can't read this? Try another

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!

Total 8 comments

I've been asked by quite a few people how I feel about the new recommendations of the American Psychiatric Association to eliminate all autism-ish diagnoses (like Asperger's and Pervasive Development Disorder) and simply call everything autism. Everyone is going to be "on the spectrum," to a greater or lesser degree, so instead of receiving an Asperger's diagnosis, a person might be described as having "less severe autism."

To be honest, I don't know how I feel about it. We have long since given up on looking for meaning in labels. There was a time when we thought the diagnosis "autism" would mean something terrible for Billy, but it doesn't. We still have a joyful, smart, funny and loving child.

And his autism is markedly different from the autism affecting other children we meet at the doctor's office or in the lobby outside speech therapy. He is highly verbal, while another child might never learn to speak. Billy has difficulty with transitions and managing his emotions sometimes; a buddy of his from therapy has never had any behavior issues. Billy has a unique set of sensory processing issues: he loves to hug people deeply but doesn't want anyone touching his head. And those issues change from week to week, as he improves certain skills, matures and develops other issues. What works on week may not work the next -- or even from one day to the next.

There do seem to be some common symptoms among people with ASD (autism spectrum disorder): difficulty with eye contact, expressive communication delays and social awkwardness, to name a few. But based on that, I should probably be called autistic too; half the population could probably fall "on the spectrum." As I've said before, if autism is a spectrum, so is "normal" and most of us could debate all day where we fall on that one.

My point is that there doesn't seem to be much point in looking for one prescription for autism. If that's their plan with this universal diagnosis, then I'd have to protest. A diagnosis of autism, in my utterly inexpert opinion, should simply be a starting point to analyzing an individual child's deficits and determining treatment for those particular symptoms.

If this new perspective makes it easier for more people to receive treatment, and to receive it earlier, I'm all for it. If bigger numbers of diagnoses mean more funding for research, again, that sounds good to me.

And if this debate means that the public is better informed about what autism is -- and what it is not -- then that's great. I can't count the number of times someone has observed Billy and said, "I would never know he's autistic." If you're expecting Rainman, you're going to be very pleasantly surprised. Rainman is about as representative of autism as a Porta Potty is of architecture.

So I'll leave the label debates to those more expert than myself. Whether the American Psychiatric Association decides to call my son's disorder autism or "Tallahassee flu," we'll still have the same amazing child and count ourselves lucky every single day.

Reader Comments

Subscribe to this blog!

...or grab my button!

Lifeisaspectrum.com button

BUY THIS BOOK!
(Billy and I are in it.)

Tags

Mon Tue Wed Thu Fri Sat Sun
1 2 3 4 5 6 7
8 9 10 11 12 13 14
15 16 17 18 19 20 21
22 23 24 25 26 27 28
29 30 31