I've had a few lovely opportunities in the last couple of weeks to get together with some pretty extraordinary mom's. Aside from my outstanding and amazing personal network of close friends who I love and adore, Autism has afforded me some new, equally lovely relationships with mom's in similar surroundings.
I'll never forget my first "meet and greet" with Autism momma's right after Avery was diagnosed and days before I delivered Kaylin. Someone, (and I can't even remember now who) patted me on the back, gave me a wink and a smile and said "welcome to the club that nobody wants to belong to." I remember smiling and laughing nervously, and thinking, no shit lady... man I wish I could drink right about now. Later on that evening, I also met and reconnected with some pretty fantastic women, who today I proudly consider my friends even if most of our relationship exists online, and we barely have time to get together amidst all of our kids activities, schools, therapies, and special events.
So what makes us so different you might wonder? Read back a few posts about planet Autism and you will be able to see. One example might be that even as I write this... I am sweating my ass off in a hyperbaric chamber hoping to heal my sweet Avery's brain inflammation a bit... how's that for a strange way to spend the afternoon? But if you are an autism mom... you get it.
However, as I travel the journey, like any other "club" the members have great differences of opinion. Sometimes those differences seperate an otherwise very important connection, and bring a lot of emotionally driven passion and discourse. I choose to steer clear of the disconnect, and try to be sensitive to the fact that we are probably all doing the very best we can with a sometimes very difficult and devastating diagnosis. I choose to learn from others experience, take what applies to us, and respect the lives that others lead. Even if I disagree with a specific treatment or whatever. These women, mothers, warriors, are all fighting a similar battle. How we cope, treat, blame, deal etc is personal and different for everybody. But is does us absolutely no good to turn against each other. Thankfully, I haven't experienced this personally... but I have seen it happen a few times and read about it all the time. I've even been criticized a few times right here on this blog for being sad, negative or whatever. Even though I think if those people actually read most of what I write they would see that I adore Avery... and am very proud of her, and grateful for the amazing opportunity I have at being her mom and learning first hand about the importance of unconditional love and tolerance.
I don't think it's a crime that I wanted more for my child. That I wanted her to able to have relationships, independence, and the simplicity of tasks that we all take for granted. The other day we were leaving OT and I was working on Avery getting her shoes from the entrance to the sensory gym.
Getting her shoes.
Just picking them up.
Forget putting them on.
I had a moment where in the pit of my stomach I realized that "my five year old can't follow a simple direction to pick up her shoes when they are right here in front of her face." Most of the time, I just do it for her. We all do. We get her dressed,change her diapers, feed her, walk her to the car, help her sit and get her buckled, turn on the tv for her, and so on and so on. She is dependent on us for everything. I'm not complaining. I enjoy caring for Avery most of the time.... I'm just pointing out that she needs me (or somebody) for just about everything. It's not what I wanted for her. And sometimes, that is pretty damn sad. So forgive me if every now and then I sigh, or tear up a bit. I promise that I am doing the best I can.
One thing is for sure. These kids... my kid.. can get better. But I have certainly learned not to let my well being or peace of mind depend on Avery's progress or lack thereof. We have spent the summer, and all of our money and spare time trying to ensure that she is getting all that she deserves. She has 9 hours a week of 1 on 1 ABA, 15 hours a week of group ABA, 5 hours a week of OT, two of Speech, and 2 of PT. She is one busy girl. Throw in some swimming lessons, hyperbaric dives and our week is over... only to start again next week. So what would she do if we hung around the house all day? She doesn't know how to play with toys yet (she only mouths them) so she would swing on her indoor swing and watch tv shows. She would play a few games on her ipad, but mostly have a show going on it too. She likes the intro songs and credits, so she would rewind it over and over again to see her favorite "parts." She would go in my pantry (if the gates were left open) and throw food on the floor because she has no idea how to open anything... and walk around in circles dropping her drink that we put in a sippy cup for her. So as you can see... we send her to so much therapy for a reason... she needs constant supervision and help. She is learning... but it may take a lifetime for her to learn what my middle child mastered at 18 months of age. Therapy is so important... and we are blessed and grateful that we are (at the moment) able to provide that for her. She deserves to learn how to do things... even if it does take 100 times longer to get there.
Somebody recently said to me...."but all kids, even those without special needs are hard." That lady was preaching to the choir. My three year old is as bull headed, manipulative, and smart assed as they come. But it's different. The issues I face with her are temporary, normal, and part of the parenting process. Though that kid can make me yell and scream and turn purple with frustration... I'm never sad about her. I am eternally grateful for her abilities, and though we have a few hard moments... there is absolutely no comparison. Autism and mastocytosis win the "hard" argument. Every time.
Am I mad about Avery having Autism? Not really. Mad is not the right word. I am sad sometimes, and overwhelmed often... but not mad. I love that kid with all that I am. I love all my kids that way. I just wanted more for her, and if all she can ever do is swing and watch tv, I want her to be the best swinging, tv watcher there is! However she ends up, I want to hold my head up high and be proud of the efforts we put forth. She deserves that.
So I've been all over the place in this post. I realize that the flow isn't really clear and the thoughts are scattered. But the point is, that sometimes it's crucial to connect with others who get you. Even if the "others" don't have children like yours, at least spend some time surrounded by people who don't judge you, and who can at least try to relate and be sympathetic to your circumstances. One of my biggest challenges in the last three years has been feeling incredibly alone. Seeing others and their seemingly perfect lives and feeling like an alien. It's sooooooo different. It just is. So thank you for your tolerance. Thank you for sticking in there with me. And thank you for loving Avery... just as she is. I can honestly say that I finally don't feel alone anymore. And I thank you for your friendship... even if you aren't in my shoes, the fact that you just read this lifts me up, and makes me feel loved and connected.