Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

11/28/07

My Autism Everyday

Where is Lauren Thierry when ya need her?

My daughter has tantrums, some are like any other child her age, most though, are major meltdowns, like you've seen on that film. They've been a fact of life for quite a while for us. I can't tell you the last time I've really spoken to anyone about them. In the beginning, we were dumbfounded and were not sure what was going on. Now, we know, it's simply a part of the whole picture. I don't gripe to our family, friends, or neighbors about them, I'm not looking for sympathy. We have learned to just deal with the meltdowns. My husband and I have our game plan pretty well laid out. We try like hell to avoid them altogether and we try our best to fizzle out the fit when we see it starting. But, most of the time, it is out of all our hands. Then we are on defense. Our daughter's room has had all furniture secured to the wall, and there is nothing heavy she can pull down. That's not to say I'd recommend going in with your guard down--there's no guarantee that a train engine or wooden block won't speed past your head! In general though, we've put the safeguards in place so that she won't get hurt when the world just gets to be too much for her.

She can go to her room, get the rage, confusion, pain, whatever it may be, out of her system. I wait down the hall or at her doorway, making sure she is okay. Some days, she simply needs to cry and work it out. Other times, she will allow me to pick her up and hold her. We will rock together and I hold her close to me, nice and secure. Sometimes, we head to the front porch, where we have rocking chairs, chimes, and a fountain. All of these things have been proven to be a great investment, they really help calm our little one. My heart does ache--for my daughter. I can't imagine how she must feel during these meltdowns.

At home, we just roll with them. When we are out in public, we've also gotten pretty good at managing meltdowns. I will admit, when it's just me, it is a lot tougher. Today was one of those days. We were on a sidewalk, my daughter had already hit me twice and was screaming. She pulled away from me. I had to squeeze my hands with all my might around her wrists to keep a hold of her. Her scream was blood-curdling. My heart was pounding, one slip and I know she'd have taken off. I was able to finally pick her up, although I felt sure any onlookers would think I was kidnapping this thrashing child. This drama continued to unfold as I attempted to get her into our car, and then buckled. She was slapping, kicking, and throwing whatever she could get her hands on. A perfect scene for Autism Everyday, I thought to myself later on.

When we were safely buckled & locked in the car, we headed for the closest drive-thru. She was still screaming, as I placed my order, repeatedly into the speaker. When I arrived at the cashier's window, he asked me how I was. I smiled and said, "well, we've been better," as my daughter continued to yell from the backseat. He warmly smiled back and gently said, "Don't you worry, everything will be alright. It will be alright."

I hold onto simple moments like that--a kind person, saying the perfect words at just the right time. I took comfort in this exchange, a stranger who took the time to say something nice--who says this world is so doomed? Minutes later, everything was alright. My daughter was happily munching on chicken nuggets and happy as can be. When we arrived back home, I set up our Christmas train. My daughter, the screaming, hitting, crying child who had fought me hours earlier, sat next to me. Smiling, she took my hand in hers (something she only has ever done when trying to pull me somewhere) and started rocking side to side. I did the same. She then began to sing, a song never sung before--a whole new carol! There we were, Christmas train circling the tree, my child and I rocking and making beautiful music.

This is what I am remembering and smiling over as I get ready for bed this evening. I have an amazing daughter who held my hand and serenaded me--this life is extraordinary! That wonderful memory is what remains from this day. That is my reality. That is my Autism everyday.

11/6/07

Bending A Little...Gaining A Lot

I've learned a lot in this life. The most important lessons I've learned come from my children. I've come to realize that being a parent is, by far, the hardest job in the world. I've learned that hearing your child cry in pain can literally break your heart. I know now that much of what you read in parenting books and magazines won't always mesh with your life or your child. It's not the end of the world if your child is not potty-trained by a certain age. The supposed "experts" do not have all the answers. The biggest thing I've learned, is that sometimes, you have to bend a little.

We've had to alter our preconceived notions, the ideas we had about much of life. We've realized that hearing the words "Mommy" or "I love you" are not the most important thing in life. Seeing your child sign those words, or point to a picture card to express those sentiments, is simply beautiful. I've literally had to remind myself early on that my child is not rejecting me or disconnected from me because she doesn't want to hold her mother's hand, or give a hug, or play pat-a-cake. As an infant, my daughter would just stare off toward the windows, or just off into an abyss. To be honest, there were times it did hurt me. I felt I must be doing something wrong. How could my baby not laugh at me doing a silly dance? Why won't she react to me playing peek-a-boo? What does it mean when your baby never stares longingly in her mother's eyes?

We had wonderful doctors, and so our education and understanding into developmental disabilities began at our daughter's 6 month well-baby visit. We knew very early that our daughter had delays. I knew instinctively that my child was different, before any professional told us. I would read notes from doctor's appointments, see test results, and go over her diagnoses. I understood them. But, when you are a mom, and especially when you've had those early bonding experiences with another child, the day to day things affect you. All those 'missed' moments can bring you down.

For some time, I had to constantly tell myself that this was not a personal insult. I was not a bad mom. My child was not a bad egg. I just had to try more, try better, try differently. My daughter liked fans, I bought a small toy fan. My daughter liked lights, I bought toys that lit up and spun. She then liked what I had. Little by little, I learned what steps to take to get involved with my child. I never expected her to just "snap out of it" and be like her sister. I knew I had to approach this entire experience, raising our youngest, in a whole new light.

Those early lessons and realizations have continued. They change, and as my daughter gets older, I know they will continue to do so. But it's still about meeting my daughter somewhere in the middle. Not trying to alter her or force her into something that would make her uncomfortable. No, it's about finding what works for her, and trying new things. I still feel at times, that my parenting "bag of tricks" that I had for my older daughter just doesn't work with her sister.

When you learn to throw out the ideas you may have previously had, your life will get better. When you start to bend a little, the gains just may be huge. My daughter usually does not enjoy being kissed. Sometimes, she may give you a real kiss. But, often, she'd prefer neither. So, we've come up with alternatives. Of course, high-fives and thumbs-up are big ways for us to "kiss" in our own way. Lately, she'll enjoy our lips brushing her cheeks. A new "kiss" is simply pressing (unpuckered) your lips against her head. This works. It's great. It's a kiss. It's a unique kiss, and it's wonderful.

We have never made our child look us in the eyes. When she talks, we try to have her toward us, simply so we can hear. We do this by asking her "can you turn to me?" just as I would her sister. We often crunch down to her level, so we can hear her. I will never forcefully pull her chin up or demand she look me in the eyes. I do not think she would ever speak, if we treated her in this manner. We don't force her to wear very fancy clothes, lace and frills drive her crazy. Most outfits are soft cotton, nice & comfy.

We don't scold her for stimming, rolling around, jumping, or screeching. We have found ways for her to ease her sensory system and ways to work out some extra energy. We encourage her to use a sit & spin, her spinning chair, slide, trampoline, bouncy ball, etc. We have sensory toys, beanbag chairs, a tent, all sorts of things around the house. To us, there is no other way. I can't imagine anything other than accepting my child, and giving her a loving, caring, & fun environment that suits her needs. I'm not being a super-mom, I'm not a saint, I'm not doing anything above and beyond the call of duty (in this case, being a parent). I'm being a mom, I'm loving my child. It's simple.

I wish, above all, that other parents will see that this is Autism everyday. And it is a beautiful...

11/5/07

Random Thoughts on Acceptance, Parenting, and Love

My husband and I have approached every chapter in our children's lives with "what do we need to do?" And, then we tackle the problem or situation head on. Behind that question, is always the idea that the end goal is for our children to be happy, to feel comfortable, to flourish--in their own, unique way. This holds just as true for my autistic daughter as it does for her sister.

Perhaps my husband and I are just built much different than most (and to be honest, that wouldn't surprise me!). It just seems we are of a minority group--parents who don't have preset expectations and goals for their children. I personally do not want to live vicariously through my child. I want to watch in amazement & joy as I see this being, who once resided inside of me, grow and blossom. I watch with astonishment as little by little my children come into their own (in each, again, their own unique way). I cannot wait to see all the world has in store for them. I will respect & support whatever life goals they have. I will enjoy seeing them get to know themselves, embracing their true self.

Yes, I said "them." I have the same mindset for both of my children. I don't feel like my autistic child will not have goals or dreams, I know she will. They might be different than what I'm accustomed to. It may take some time and creativity to figure them out correctly. But whether it's something she takes interest in next week, next year, or 10 years from now...I will support her in any way I can. Autism has not stolen anything, especially dreams and future plans, from my child.

I don't get what is so hard about realizing that your child is their own individual human being. You do not own them. They are not possessions. You teach them, guide them, hug them, support them. But, you must let go. They are not you. They are most certainly not the you you always wanted to be. They have nothing to prove to you.

It rattles me hearing so many parents of autistic children pity themselves and all that their child will never do or won't be. It's pathetic. If, at the end of the day, my daughter is content and feels safe, I've done my job. What more could I want for her?