The Way it Is / The Way it was Supposed to Be

I have a gorgeous 18 year old daughter, Ella. In a couple months, she'll be 19, the same age I was when I gave birth to her. I was a skinny, quiet, church-going married teenager. She is a more voluptuous brown eyed beauty with a her dad's thick brown locks and talent for math and art. She also has autism. Something I had never heard of when I labored 8 hours in that hospital room believing I was doing the Lord's work. Its been a long and short 19 years. Full of love, fear, joy, confusion and letting go. In a short month, she will go "out on her own". She'll be sharing a house with another girl with autism and she'll have more independence and more of her own life than she has ever had. That's what I keep telling myself. It's what she wants as far as she can communicate with us. She'll be living with the same agency that her brother lives with. For the most part, its been a good experience. Still, It's....well, lets just say if you can't find me I'm in the bathroom crying.

I'm no longer naive, but I do have much different world view than I did when I was carrying her around in a basketball shaped belly miraculously held up by my thin legs. I'm aware that it "shouldn't have been this way". I'm also aware that I should view autism as a "gift" and every viewpoint in between. My daughter is a gift, but her autism is not. I choose not to wallow in it. She doesn't. I choose to live my life and allow her to live hers. I choose to help her find the best life she can. I have a house full of beautiful art that she has created and the sounds of her voice when she gifts it to us. Yes, her life at the new house will be full of caregivers coming and going, and silly goals written up by case managers. Her life will not be perfect. some think I should keep her home forever. Some think I should have done more. I've learned that some are angry when then find out I'm not a crusader for autism. I'm not furious about recent changes in my state that will change the way both my kids receive services: Medicaid Changes in Iowa. I just have no room for anger anymore. Nor do I have room for judgment. Do what you will, cope how you need to. Live life your way.

She's laying on the couch right now with a pillow over her head. Too much stimulation this morning. I was excited about a day together. No work, no day program (for her).  Just time. A precious commodity. I made pancakes that she happily ate and took her bath in the big bathtub with the jets. She let me put her hair in a pony tail, although I was not allowed to brush it. I've learned to take the moments as they come. Ella and I have breakfast together almost every Saturday. Its one of our favorite traditions. The waitresses at our favorite diners know us and our order of coffee with milk and a root beer. They smile at her and look the other way when she takes a few candies from the JDRF box and orders chili cheese fries at 9 am. If a new minutes, when she's ready we're going to go downtown and explore. Its a beautiful day. Just the way things were supposed to be.

Its Really Hard to Get Stuff Off the Internet

Jesus, its been awhile since I've written anything. I'm surprised this thing is still hanging around. I once heard a wise man say "Its really hard to get stuff off the internet". No kidding. Changed my photo. Sadly, I'm not 32 anymore. I hope no one reads this. Testing Testing.

Do people still blog?

Don't answer that.

Aidan

A few comments for family and friends who have shown interest in the situation regarding my son, Aidan, and his recent move to an assisted living facility:

I cannot tell you how many times I've started to write a blog post about Aidan and couldn't finish it. I did want to touch base with my family and friends who have knowledge of the situation and my be wondering how he and the rest of the family is doing. I have had many people lend a sympathetic ear and express empathy and concern. I have truly been touched by many of you. Just letting me know that you care is sometimes the greatest support.

I wish I knew exactly how Aidan is doing. He seems to be fine. I've seen no displays of sadness or confusion. He seems to be happy at the house and "normal". I have a lot of questions and no answers to his mental state. I visit him everyday, most days bringing the other kids with me. It always makes me sad to leave. It probably always will. Preston and Ella are always pleased to visit him and are making fast friends of the staff and the two other boys that live in the house with Aidan.

Yes, I have had bad days. Some very, very, bad days. But it is important to me that the kids don't see me fall apart, and I'm happy that so far, I've been able to keep it together. The thing I hear over and over from people is "this must have been such a hard decision for you". The truth is, it wasn't a hard decision. It was the only decision to make. We knew that Aidan could not be cared for the way he needed to be and there might be serious consequences if we continued to postpone the inevitable. We also knew that Aidan has much more opportunity for a full life now. We also knew that the other two kids were severely limited in their opportunities while we dealt with the overwhelming task of managing Aidan's behaviors.

I wanted to end this note with a few words about Aidan. I've never met anyone who spent some quality time with him and didn't fall in love with my son. There is something radiant and special about that sweet boy. I've had caretakers who confessed to me later that they were initially afraid and didn't know how to approach him, but were quickly disarmed and enamoured by the charming, inquisitive and loving child that Aidan is. Despite all his challenges, he is a brilliant and gifted child. He is always surprising people. If you have had the privilege, you know that you will never get tired of hearing his laugh. Aidan's laugh is like a drug you can't get enough of. Making him laugh has been one of the greatest joys of my life. Aidan likes to dance. I like to say he has my terrible taste in music. I remember the day I discovered he liked MC Hammer as I watched his head bob back and forth in the back seat of the car. Sometimes he will let me cuddle with him. That is the best!

I am happy for Aidan and his new opportunities and so hopeful for his future. I have in no way shape or form given up on finding solutions to Aidan's challenges. I am excited that he is getting to meet new people, go new places, and try out new experiences. Please know that I appreciate everyone who provided words of support or encouragement in these last few months.

The Trouble With Job

Though he slay me, yet will I hope in him; I will surely defend my ways to his face. (NIV Job 13:15)

I remember being in a camp service as a teenage girl singing one of those emotionally charged worship songs the contemporary church is known for. "Though he slay me, I will worship him..." the lyrics to the song were taken from the well known bible verse in book of Job. Job is one of the most perplexing stories in the biblical cannon. A "blameless and upright man" (from Job 1:1), a man who God uses to prove a point, sending destruction on his household, or rather "allowing it". Still, Job worshiped God. In the end, Job's life and family are restored when God bring his children back from the dead. Oh, wait, he didn't. He gave Job new children and the new daughters were really beautiful too. Beautiful enough that they were considered worthy to be on equal terms with their brothers (Job 42:15). That's a great story. One that I would like my daughter to read.

Looking back on that day, in that auditorium, singing that song in unison with the other devout youth, I bought it. I bought the idea that the God "slayed" the worthy. God would always redeem his chosen ones....eventually. I believed that facing "trials and tribulations" made me special and that my reward would be in heaven. Why is the reward in heaven now instead of on Earth as it was in Job's day? Because too many people have noticed a pattern, as I have. The pattern is that God does not reach his big daddy hand from the heavens and care for his people. People get sick and die. Tragedy and suffering happen, but many things we can control. Changing my life and my fortunes is largely up to me. The grand lesson in the book of Job is one of submitting your mind to the largeness of God and the incapability of the human mind to understand his ways. The church taught me that to serve the greatness of God would make me great in the end. Ultimately, am I really here to serve God's ego? I guess I'll never know, I was created to not understand, right?

Facebook, a few thoughts

I've been doing some facebook housecleaning lately, commonly called "unfriending". Facebook calls it “removing the connection”. That sounds much nicer. We all facebook for different reasons. Some of us get a big kick out of a huge friend count. Some of us “really do have that many friends!!!”. It's all good. I don't. I don't have THAT many friends. I have friends that I used to know but am not close to anymore. I have friends that I'm close to now specifically because we connected, or reconnected on facebook. I have acquaintances, people who never really were friends, old and new. There's friends from high school who I don't think I exchanged more than 2 words with over four years. It's all good. The thing that I've been thinking about lately is another group of facebook friends. The people who have no interest in conversing with you at all. If I make an effort to comment on the photo of your cat and you have no interest in my cat (bad example, I never look at cat pictures, but you get the idea), why did you add me to your friends list? If we've been fb friends for a year and we have never once conversed, what's the point? I understand the curiosity about other people's lives, especially if we haven't seen each other in awhile. Btw...Kennedy class of '95, we all look great. Just sayin'. ;-) I also know I've been just as guilty. There are many many people on my list that I've never conversed with. We only have time for so many relationships. Personally, I've modified my facebook to suit me. I'd like to hear your thoughts, if you have any.

Learning How to Live

It's been forever since I updated my blog...I know. And thanks for the nudge, Aunt Barb. :-) To be honest I have so much to say right now and no interest in saying it. Maybe the times not right. Maybe I just need to get started. It's been a time of adjustment for me, big time. Wrapped up in a flurry of changes, good and bad. My sister sent me one of those little facebook messages the other day. It said something like "never stop learning how to live". I like that. I've been working a lot at the middle school this fall. It's fun to watch the kids there. Some of them seem to have it all together with their 4.0 GPA and their neatly trimmed hair. Some of them remind me more of myself at that age, awkward and clueless. Sometimes I'm walking down the hall and I flashback to my middle school days and see the face of someone I knew back then, just as they were. It makes me smile. I enjoy watching the 6th graders at lunch happily conversing with each other, and then two lunch periods later the 8th graders, who have purposefully arranged themselves in cliques according to their perceived self worth or something like that. Strangely, that makes me smile too. The kids are doing the same thing that I'm doing right now. Learning how to live. Learning how to show up to school with mismatched socks and decide if that was intentional or not and if they even care. (For the record, if I have on mismatched socks it's because I didn't do the laundry AND I don't care). I'm not going to end this post with a profound statement, because I don't have one. I'm just going to say thanks for reading, and enjoy your day! I am enjoying mine.

Autism Cults

I heard the term "autism cult" the other day on Twitter. I had to laugh at that. Having spent significant time in Christian circles I know that "cult" is a word that is thrown around a lot between denominations and sects. I've heard churches use the "cult" word in the way a teenage girl might call another teenage girl a "whore". One is upright and pure, the other devious and false. I also hear it in martial arts. Be on the alert for "cultish" behavior. What is a cult? Is DAN! and the Autism Research Institute a cult? Generation Rescue sending out their "rescue angels" to prey on desperate parents and teach them to hate their pediatrician and their neurologist? Hot damn, give parents some credit! We are not brainwashed drones, we just want to help our kids. I am not going to give my whole story here, because I don't have 2 weeks to write it, but I have experienced the good and the bad of autism intervention. There ARE recovered children, you cannot deny that. My youngest would be an example of that. I spent more money than I care to count on interventions that did nothing for my other two. I do not regret it, nor have I given up on them. The doctors that cared for my children were not preying on me. They were the only ones offering help. If I have even a chance of recovery, I'm going to take it. Most insurances don't cover alternative medicine. I fail to see how this is the fault of the provider, all who have been reasonable and compassionate in regards to how they charged us. Unfortunately for us the bill was x3 and we couldn't continue down that path forever.

DAN!, Generation Rescue, and the like have been the targets of much ridicule lately. "Parents should not be given false hope", "Parents are being taken advantage of", "Parents should stay with interventions that have been proven and studied". So I'm supposed to sit around for some "expert" from the CDC to give me the green light to help my child? Traditional therapies are fine, but barely a band aid. When my kids were smaller the much heralded ABA therapy required an in-home therapist (none existed in my area) to the tune of 40 hrs a week and 40,000 a year. I have no idea what it is now. It has been my experience that most of the "autism cult" ridicule has been from parents of higher functioning children. It also comes from the concerned aunt/uncle/grandparent of autistic children. Thank you for your concern. Thank you for talking about the issue. Autism needs to be discussed, it is a huge problem that is not going anywhere and affects everyone. Alternative therapies gave me reason to hope, you can call it false hope if you like, but for me there was nothing false about being able to get up in the morning and crawl out of the pit of despair. My two didn't recover (yet) and may never, but I have nothing but admiration for the scientists, researchers, and crazy parents who have not stopped looking for answers. And to you, parent of asperger's child or PDD child, you really have NO IDEA what my life is like until you care for a low functioning child everyday.