Welcome to my office.
It's where I go in the hopes of changing the world as I write. And as an added bonus, it also serves as a bed. I'm working hard to help make the world a kinder, sweeter place. Mostly for that little boy standing just a few inches away from the TV in the picture above. Can you see the slight glow of his head by the TV? He's my wildest dream come true.
Sometimes late at night when I'm writing Parker will wake up or Greyson will need something.
Can you get that? I'll ask the husband, Michael- if he is in town.
Why can't you? He will ask.
Because I'm at work- I tell him.
How much do you get paid for your job? He asks jokingly.
Immeasurable amounts of wealth, I tell him seriously.
Words put me back together when I fall apart. Reading them. Writing them. Singing them. Saying them and hearing them. I'm so grateful for the chance to share some words with you.
Yesterday we went to take the boys to get a hair cut. I called ahead to make an appointment and found out our regular gal was off work for the day. No biggie- we decided to go anyway.
I would never go so far as to call the hair cutting experience pleasant- but it's usually not too bad. I have Grey sit on my lap while we bribe him to stillness with Yo Gabba Gabba and suckers. That's how it went down yesterday too- but this time he wanted Dad to hold him.
This was Parker's second hair cut. The first was easy. This time? Not so much. It was terrible. He cried and screamed the entire time while clenching a dum dum sucker in each hand with all his might. I had to hold his head still while the lady kept cutting and cutting. Just one more spot, she said 100 times. We left and I was covered with slimy sticky sucker and a million little sharp fine Doodle hairs stuck to me.
We went to the parking lot where I surveyed the boys. Suddenly I was positive that the real stylists were abducted and replaced with two women that had never cut hair before in their life. I mussed Parker's hair every which way to attempt to find a way that his hair cut made sense.
After the hair butchering, we went into Target which is in the same parking lot. I bought scissors and then used insane amounts of restraint to wait until we get into the parking lot to start fixing Grey's hair. (Parker's was too far gone). The front sides of Greyson's hair were longer than the back and he resembled a 58-year-old Rabbi. I start laughing so hard I actually start to cry. WHAT DID WE DO TO THEM? I ask Michael.
And today, numerous times throughout the day I would look at their hair and turn my head and just start laughing...and then feel guilty for doing this to them in the first place.
Parker during Speech Therapy today. Despite the haircut, he's still so damned cute and is also my wildest dream come true.
Grey was just so off today. Sometimes it is hard for me to watch. I get frustrated. He was ticky and twitchy and stimmy and couldn't focus. It was nearly impossible to reach him. As we were leaving speech I felt disappointed...and then I felt guilty for feeling disappointed. And as I walked to the car with my head low I realized- Kids are allowed to have an off day too. Grey was just having a hot and sweaty melancholy Monday. It's not my job to be disappointed, it's my job to build him back up when life disappoints him. And I breathed a sigh of relief because supportive feels so much better than disappointed.
And today I was having a melancholy Monday too. And Grey showed me that it was okay for me to be having an off day too. Off days aren't allowed if you are a robot, but if you are human? Totally entitled.
Everyone has a sentence. A very small, random, descriptive sentence. After I realized Greyson was autistic, there was a part of me that immediately thought about my sentence.
Did you hear about Chrissy Pratt Kelly? Her son has autism.
And I knew that would be my sentence because I hear sentences like that all the time about others.
Did you hear about so and so?
She got divorced.
She gained weight.
His son drowned.
Her husband cheated.
They lost their house.
One stupid little sentence to sum up an entire person. It's not possible, yet we try. I've done it 100 times in the past, but won't do it again. I was wrong. We are all beautiful and amazing dynamic people with a history full of beautiful stories. We are not a sentence. And in the midst of living this painfully exquisitely beautiful life, I suddenly just don't care at all about my sentence anymore in the first place. You can certainly call me the Mom with two boys that have autism. I'd be honored.
They work so hard and make me so proud. The pure love and hope and fear and scared and proud often makes my eyes leak.
A 2 hour cool bath helped us during the witching hours tonight.
This small moment of interaction took my breath away.
You can also call me a world changer. Because with your help, I am.
I hope you have a TERRIFIC Tuesday my Friend. I'll be here Tuesdaying too.
Greyson + Parker's Proud Mom
Facebook with Greyson + Parker and me!
Amazing. I've been waiting for this all day. Thank you!ReplyDelete
Breath taking pictures! Warrior on, proud Mama! XOReplyDelete
I was having an off day yesterday too. My husband kept trying to make me feel better and I kept telling him, it's okay to have a bad day, tomorrow will be better. Then I went to bed before 9. Here's hoping for a Happy Tuesday!ReplyDelete
Love your posts here. They are truly inspiring, whether I am having "one of those days" or not! ;)ReplyDelete
Oh the haircut experiences! I've been there with you with the sticky suckers and tiny hairs covering my entire body and the attempted coercion to get the little one to sit still. Now, we just cut hair at home. It can happen on our time (or his rather) and is far less stressful on all involved. And over time, I'm getting better at it! ;)ReplyDelete
My eldest son has sensory processing disorder, anxiety, and until the age of 4, would NOT cooperate for haircuts....Our experiences were a lot like yours with distractions & physical restraint...it was exhausting!!! Just know that it WILL get better, as eventually they will 'get' that it must be done. My son now says, 'let's get this over with so I can get my candy, ok?' :-) Hugs to you & your beautiful boys.ReplyDelete
My 14 year old son has Aspergers and looooong hair. He says he can feel the scissors cutting his hair and the vibration directly to his head and jaw is completely overwhelming.ReplyDelete
I've never, ever thought about the idea that everyone "has a sentence." It was utterly fascinating to me. I had to sit here and contemplate it for a while before I could even move on.ReplyDelete
Sometimes, perhaps, I even impose that sentence on my own kids. Maybe I need to do some changing myself-- make sure I given them many, many sentences and speak them often.
You and your family are amazing. Your boys are so wonderful - I love to read about them and see pictures and that "thing" they have? It doesn't define them. Like the "thing" I have doesn't define me! We all have things in our lives, some kind of hurdle to jump, things to make us grow and learn and hopefully, to learn to love and be kinder to each other.ReplyDelete
Honestly, before I found your website, I didn't know much about autism. But I've done some searching to learn and, hopefully, understand. I think my cousin's son has autism (I'd actually bet on it). All these years, I've wondered what his deal was (he's 19). Now, with my suspicion, I feel like my heart has been broken open to loving and being understanding instead of frustrated with the inability to "get" him. Labeling him autistic (even if only in my own mind) isn't what changed it for me. It's the "thing" he has to deal with. You have helped me see that. So thank you. You and your boys ARE changing the world.
Thank you. I don't know how you do it but you seem to 'speak' the words that are in my heart.ReplyDelete
I often have to remind myself that my daughter is 3. I have to be okay with her acting like a 3 year old because she is a 3 year old. She's very verbal and understands A LOT and extremely inquisitive but eventually the 3 year old emotions, energy, frustration, etc takes over and it's not as much fun for a little while. It's hard to remember that it's up to me to be the re-builder rather than assist in the demolition / destruction of calm and peace. Not be reactionary but rather compassionate and most importantly (which is the absolute hardest for me)patient.
I just found your blog from your post at Momastry. That post almost brought me to tears and I must say that you are an amazing woman! I am so touched by your insighful words and attitude and I thank you so much for writing all this. It really does reach out to me and others who visit your blog. We get so busy and sidetracked with life that we forget that we can write our own stories instead of being reduced to sentences. Bravo!!ReplyDelete
Chiming in to let you know that your blog is such an eye opener for me into the world of autism and such an encouragement that if, someday, I should find myself in a similar position, there would be a mom with whom I could relate. I think it's every mom's fear that something will "go wrong" with their child, but the fear is relieved and I feel courageous when I find people (like you) who say that there is nothing really "wrong" in the first place.ReplyDelete
I found you thru your article on Momastary. I have a son who is beautiful and has taught me to celebrate all the little moments in life. My eyes teared up reading your post of the boys and their haircut. One time I took my Benny Bear to the kids barber shop. It was so painful for the both of us, I just held in my hysteria and sadness until we almost reached my car. I just cried, why does a darn haircut have to be so hard for my Ben? Everything is hard for him, why something as simple as this hard.....I just cried. Later I was telling my dad about the situation and how I felt like all these parents were staring at me and my hysterical son. He reminded me that they might have been thinking to themselves, wow, what a patient loving mother of that little boy. Reading your story just relived all those feelings. I love your blog, I love reading it, and thank you for trying to enjoy life a moment at a time. Thank you for being honest. God bless you and your family. Keep up the fantastic work momma. You are their hero and their best advocate.ReplyDelete
With Parker: try putting his hair in spikes with gel or water! Your boys are both so cute!ReplyDelete
Yesterday (Monday), I was convinced I was raising a psychopath. Today she's just a normal 5 year old girl who's a little intense about life - JUST LIKE ME! Thank goodness we're allowed off days - thanks for the reminder. That hand holding picture is priceless and makes me breathless.ReplyDelete
I am Lisa, who had three kids in three years. I think I live a lot of my life trying to prove to people how that was not completely crazy. The experience of being the woman who "has her hands full"/"doesn't know how these things happen by now" has definitely taught me to never, ever judge anyone else's life. Thanks to you I will be conscious about assigning sentences to people.ReplyDelete
Look at her, her son is an addict.....she must have been a horrible mother. I hear that one in my head.ReplyDelete
YOUMECCAMELAFF! My son has always been a bear at haircuts, so my mother kindly began cutting his hair. It is the same cut she gave to me & my 3 siblings 40 years ago.ReplyDelete
My sister will always ask what it looks like after mom cuts it (as if it would be any different). I reply, he looks like a movie star. Then I refernece that exact photo you have posted of Jim Carey in Dumb & Dumber. And my love is so stinkin handsome he rocks the look.
Hey, did you hear about Chrissy Pratt Kelly? She's a world changer.
Love & hapiness sweet Momma :) Jennifer