Swinging To His Own Beat

I took this picture yesterday afternoon as my kids enjoyed their new swingset after weeks of rain and mud. They are all laughing and having a grand time.

When my girls are older, I want them to look at this picture and celebrate their brother's differences. He may not always go in the direction we want him to go in but he gets where he needs to be in his own sweet time. 

And wouldn't the world be a boring boring place if we were all exactly the same?

Umm Beyonce??? The DIVA is after your job.

The Deep End of the Pool

Do you know my fabulous friend Jess over at A Diary of a Mom? Please go read this post of hers before you proceed. I'll wait. Cue Jeopardy Music.

Done? Ok good. Let's get started then.

We swim in the deep end of the autism pool. Maybe not the deepest murkiest part but we are in pretty deep. Yes Boy Wonder is not very verbal. His social skills and play skills fairly non existent. He struggles to express his most basic wants and needs while we struggle to understand him.

But our struggles are just that. OUR struggles not your struggles. While your struggles are in the shallower end pool, they are no less challenging just different.

I've never once wished that Boy Wonder was less autistic, had HFA or Asperger's.  I've wished he didn't have autism at all. I wish no parent ever had to hear,"Your child has autism."

I empathize with your struggles and I celebrate your child's victories. But never once have I thought that your child has it easier then mine. I just think their challenges are different.

I don't want more company down in the deep end of the pool. It's crowded enough down here.

Four Words For World Autism Awareness Day 2011

It's funny how four little words can change your life. Will you marry me? I want a divorce. You have a son. Your son has autism. I've had all of those things said to me. The last two are the only ones that really changed me. The very last one changed me irrevocably.

Four words that change your perception of what you thought the future would hold forever.  Gone forever the blissful ignorance of those kinds of things happen to other people and never ever to you. You become more aware of other kids development.

You learn acronyms, like PRISE, IEP, IDEA, and ABLLS. You learn about DAN Doctors, Bio Med, Floortime, ABA, VBA, ST, OT and PT. You try the  GFCF diet.

You are forever changed. Drastically and radically changed. You stop staying the "R" word. You judge others less. You find compassion and tolerance. Your patience and empathy grows.

You find out who will step up and be a real friend. You find out who will step away. You'll make new friends who are on the same path.

But I can say this with utter certainty, you now have a choice.  You can choose to be bitter over what you think you've lost or you pick yourself and move forward.  Your child standing in front of you. S/He needs you to dig deep and be more adult then you ever have been in your life. 

I promise progress will come sometimes painstakingly slowly and sometimes surprisingly quickly.

Now I have four words for you. You CAN do it.  And that's a promise.

When the Words Won't Come

I think I am understanding lately  how Boy Wonder may feel. I have so much to say but I can't say it. I keep getting in my own way. Post ideas listed everywhere. Half written posts in my head but when I sit down to write nothing comes. I feel blocked and jittery.

Is it because of what's going on with the school district? This waiting game of who pays for what if anything? The Boy's placement for next year has me on edge and jumping out of my skin. Snappish and no patience for little girls whining.

I could tell you that I'm running faster but it's fueled by fear and anger. That the forced rest days built into the schedule I'm tempted to ignore because physical pain dulls the fear and anger.

Sleep is elusive for me and Boy Wonder. He's been getting up at 3 am. 

I could tell you that I feel that there's been no meaningful progress for Boy Wonder for months and that it makes me angry.  Angry because I thought we'd be farther along by now. Or I try to remember that he seems happy and that's what matters most. 

I could tell you that Sweet Baby Girl is developing beautifully and typically. She is my happiest, sweetest, most smiley baby. At 15 months, she has a few words and is into everything.

Or that the Diva is living up to her name. In all her 3 year old glory, she thinks that screaming in my face will change a no to a yes. Or that potty training is optional. But she is so smart and can be so sweet. Lots of questions and I can do it myself. Or that I find her fashion sense outrageously wonderful. 

I could tell you other things but I'm searching for my words just like my Boy Wonder.

A Diva Promise or All Lies

You Say Tomato I Say Tomatoe

“Individually, we are one drop. Together, we are an ocean.”

 Ryunosuke Satoro

Strict ABA Program 

Floortime

Gluten Free Caesein Free

Special Carborhydrate Diet

Whatever he/she will eat today Diet 

DAN Doctor

No DAN Doctor

Biomedical Intervention

Lucky if they take a multivitamin intervention

 A known genetic cause

Vaccine injured

Genetic factors with environmental triggers

No clue why my baby has it

Team Curebie

Team Neurodiversity

Praying for a miracle

Praying to get through the day

Just diagnosed

Years since diagnosis

Our children are part of the fastest growing diagnosis in the world. They have autism.  Yet we fight amongst ourselves. We judge each other's choices. We call names. We are steadfast in our beliefs that our way is best.  We preach acceptance yet don't practice acceptance.

But what would happen if we all banded together? If we worked together, despite our differences? We all have one common goal. We want happy healthy children who grow in to valued productive members of society. Who will be happy and  safe long after we are gone. I don't know how we can possibly get our children where we want them to be if we can't band together now.

 

Don't you think it's time we all worked together?