Sunday, March 28, 2010

Sadness!

I usually like to keep my blogs upbeat and positive. But today I'm feeling melancholy and just don't feel like being upbeat. So please be warned... this is a long and not so uplifting post. Please don't feel obligated to read it. I won't be offended!

I was talking to a friend the other day who just celebrated a birthday. She mentioned that her 20's were difficult because she felt so self-conscious, but now in her 3o's she's so much more confident.

I feel the opposite. I feel less sure of myself now than I did as a new mother. Being an only child, I really had no clue about being a mother and I probably should have felt overwhelmed and insecure. Maybe I even did feel that way, I just can't remember. When I look back to my 20's, being a young mother, just starting my little family-- all I can think is, those were simpler times. Lately we've been recording our old home videos onto DVD and I really miss those days when my kids were young and our troubles consisted of an occasional tantrum or a boo boo.

Don't get me wrong. Life is not bad now and I really do enjoy it-- life is just a lot harder that it used to be.

My 12 year old daughter has High Functioning Autism. We went through quite an ordeal to get her diagnosed. I'm thankful for the diagnosis in a way, because for so long I felt like it was my fault that she wasn't developing socially. I felt like I was doing something wrong or that I wasn't teaching her right. Now I know it's the disorder. I don't have the mother's guilt anymore, but it breaks my heart to see her struggle.

In some ways, I think that having a severe disability is easier than having a mild one. Again, don't get me wrong. I feel extremely blessed that my daughter has so much going for her. With some help, she will be able to live a full and productive life. I am grateful for that. What I mean is that when you meet someone and they are severely disabled, you automatically understand and are willing to help or at least tolerate that person.

I think of High Functioning Autism as a hidden disorder. When you look at my daughter, you don't think something is wrong. You could even talk to her and yes, maybe she's a little odd, but nothing is wrong. So people meet her and associate with her, but when she does not behave the way a typical 12 year old would, (she behaves typical for someone with HFA) she is ridiculed, shunned, looked down upon, kids talk about her behind her back... the list goes on. And it breaks my heart. She wants and needs a friend so bad. Everyone needs a best friend.

The thing is, being her mother I can see all the wonderful things that she does. She tries so hard to please others. She's helpful and thoughtful and loving. She's so amazingly good at art. She focuses on the art because that's where she gets the most positive reinforcement from her peers. When people love her art, then she feels loved. I wish they could see the other wonderful parts of her too.

I'm the first one to admit that she does some pretty strange things. Both my husband and I try to help her learn the "social rules" that all of us are expected to follow (like you don't wipe your nose on other people's clothes or you don't just walk up and take someone's food because it looks good), but often she gets upset and feels that we are trying to "change" her. Sometimes I feel like putting a sign on her that says, "I am Autistic" just so people will understand.

A lot of times she feels bad because of the way others respond to her. Their reaction is really a normal one, but she doesn't understand that her behavior caused the reaction (like her peer calling her disgusting because she wiped her nose on the peer's jacket). She just doesn't get it. She feels like the peer is mean to her and doesn't understand why.

Another hard thing is that she has seizures. In order to control them she has to take medication. Sometimes the medication makes her aggressive, depressed and sometimes she even has suicidal and dangerous thoughts. We have switched so many medications, back and forth. One helps but has the negative side effects. The other doesn't have the side effects but doesn't control the seizures. One seems to be working and then two months later, we start seeing side effects. And... is it the medication, the Autism, hormones or just her? It's very difficult.

The hardest time I have with all of this is that I want to fix it. And I can't. I don't even know how. I worry that I'm not doing enough, or that I'm doing something wrong, so in the end I will totally screw up my family. Half the time I don't even know what to do-- how do I get my kids to show more love and compassion? What do I do when they fight constantly? How do I get them to love themselves and each other? What do I do when they are in the middle of a gigantic fight? How do I help them resolve their issues? How do I prepare them to succeed in the world today? Everyone else seems to have it all put together. I know there are tons of parenting books and advice. I actually hate reading parenting books. Some have good ideas, but...it's too impersonal and overwhelming.

Then my other daughter (9 yrs old) has her own emotional, social and friend issues to deal with. She also longs for a best friend and struggles not having one. She's close to her cousin, but they live so far away. She's constantly fighting with somebody and demands quite a bit of emotional attention.

Then you have the other 4 siblings who need their share of attention and love too.

Again, don't get me wrong. I love my children and I'm grateful for them. They each bring something special to our family. I know that I am so incredibly blessed. There are people who struggle so much more than we do. Everyone has their struggles and we're no exception. I'm a person who thrives on peace and hasn't had a lot of it lately. But I don't like feeling down, so I'm going to go do something to find my peace. Maybe this was it... just venting and writing my feelings down.

Thanks for listening/reading. If I've left you on a downer, I apologize and please, go and find your own peace.

11 comments:

Emily said...

Andrea,
Tony here (not Emily). I've worked with individuals that have autism for the past 5 years, and I appreciate your view. I hear in your words so many of the thoughts, feelings and struggles that I've had and heard from parents. You're probably bombarded with advice, so I'll not give any to you.
You summed it up best when you said "Autism as a hidden disorder" because that is exactly how I feel about it. It is often most hidden to adults, but most obvious to peers because it's a social disorder.
to be honest, this blog entry wasn't half as down as I expect from a parent struggling through what you are dealing with!

monica said...

Andrea, you are an amazing woman. The Lord knows your struggles, I know that He does. Please let me know if I can help in any way. You have so many friends in the ward that are willing to help out with whatever you need. :)

Natalie said...

It's hard enough to go through adolescence and teenagehood ourselves, who could have imagined how much harder it would be to watch our children navigate through heartache and disapointment, simply striving for acceptance and friendship! Bis ans ende aushauren nicht aushalten! Just keep on keepin' on, the Lord will fill in the holes!

Kristal said...

Ahhh, so that's why I kept thinking I should ask you how Hanna was when I saw you this morning! Now I wish I hadn't let myslef get distracted from what the Spirit was telling me. Could've been good for a least a hug, I bet! And I agree with Tony, it didn't sound like venting to me - just a Mom who loves are cares deeply for her kids.

Mom W. said...

Andrea, I don't know if it helps, but you are loved! You are a great example to so many people. Venting is a good way to get some of the weight off your shoulders, and if you need, I'm here to listen; I just wish I could do more. Keep on keeping on. You are not alone.

Greg & Anna said...

I love you, Andrea. Seeing the real you helps me more than you'll ever know. Thanks for allowing many of us to love you right where you are at!

Love,
Anna

JAG said...

Oh, Andrea,
I love you so much. Please know that if you ever need anything, Grant and I are here for you. Wish we lived closer to you guys. Hang in there.

Love,
Janus

Emily said...

(This is the REAL Emily, now!)
Hey Andrea,
It's comforting to see someone I look up to SO MUCH trying to figure life out right along with me. I've only seen you with a smile on your face, and with loving arms around your beautiful children or with your handsome husband. You go through so much . . . and yet each time I see you, you seem stronger and even more loving. I just look from the sidelines, but I can see just a small portion of what Heavenly Father is helping you to become. You have such a loving heart. I'm sure that in the future, when your kids look back, they'll see the friends they had in you and in Heavenly Father, and they'll know who to turn to when they're feeling alone.

AZSMITHS said...

Thank you all for your encouraging words and love!

Rachael said...

Andrea,

Your strength amazes me. I'm in the middle of tantrums and boo boos (and a nasty stomach flu at the moment), yet even now I have moments of being overwhelmed and wondering if I really am cut out for this.

Your spirit shines through the words on the page, and I KNOW that you are meant to be Hanna's mom. You are her biggest cheeleader and will always be her rock. You ARE cut out for this, and she is lucky to have you.

:)

pdwheeler said...

Andrea,
Far from being a downer, I was impressed how well you could express yourself. Along with the challenge Hanna has to bear, she was given the perfect mother to help her get through it. I am always amazed at how well you do with your children, especially with the little experience you had growing up. I love you. Dad