Wednesday, October 2, 2013

Then and Now: The difference a few people can make.

I have been thinking a lot about the future lately. Thinking about our options. Looking for information on the probabilities. Trying to figure out and come to terms with where he is today so I can know what look at for tomorrow.

I have a friend who's son is a lot like Alex. He's going to be 16 soon. While I was looking for information on something I need and information for another friend, I read a part of IDEA that I had never seen before. I didn't look too closely, just noticed it and continued my search, but it said something about transition starting at 16. I decided to ask my friend about it because I'd like to know as much as possible about what's coming, what we need to do, what to plan. She answered a few of my questions and told me her Regional Center worker was helping her.

That has me looking back. Far back. Back to the last time I called Alex's Regional worker. It was several years ago.

God, I was so desperate.

That previous year we had had 13 DFS calls from the school for bruising (easy bruising/ proprioception) and other crazy things like our home not being stable because I wasn't married to my (now) husband, because my boys weren't taking medication (IDEA says they can't require meds since the meds they were bitching about were ADHD meds), because they were playing on bunk beds that didn't exist, because they were keeping each other up all hours of the night, because Alex was playing with electrical outlets (that wasn't Alex, that was Goofy. and he wasn't playing with them, he was licking them. and it's not like we allowed it.) the list goes on, 13 calls in a single year worth of goes on.

I was clueless about autism. I knew a thing or two, a lot more than I started out with; which was a 4x6" slip of paper with only the words "ADHD combined type with autism" that was handed to me after a 15 minute appointment- No reports. No pamphlets. No brochures. No resources. Just "here ya go, take it to school." and an outdated diagnostic manual entry that said Alex's autism was my fault.

After we got his diagnosis, I used my job to get information, I was a Certified Nurse's Assistant so I raided the nurse's diagnostic books for any information I could find and talked to the Occupational Therapists that worked with our people. Our special needs unit was Alzheimer's, Huntington's, and behavioral problems so my information wasn't exactly accurate but you make do with what you've got. but here we are, years later, I still didn't know about proprioception or how to meet his sensory needs outside of rub him down with some lotion and toss a weighted blanket on him- neither of which he particularly enjoyed. That meant his sensory needs weren't being met at home and they weren't being met at school either. That equals bruising. Crashing, banging, falling, jumping, "aggressive" behavior. Lots of it.

I stumbled around on the internet, trying to find something that would help but I didn't even know where to look. I didn't know what to look for. I didn't know what to ask.

That year and the next year, home was so bad. Awful, really. He was always getting hurt. I lost him so many times. The last straw was when he took off during morning bus times (rush hour type of crazy), ran out in front of a car, probably a line of cars but only one parked where they stopped to chase him, and disappeared for so long that I was close to hysterical tears and seconds away from calling the police, so sure that it was too late.

That day, I knew I couldn't do this anymore.

I couldn't keep him because I couldn't keep him safe. I didn't know where to get help, where to get information, where to turn. There was no one in our lives who knew a thing about autism- not even the school. Not that I could have turned to them for help if they did. It would just be another DFS call about how I screwed up. and since we weren't abusing him, DFS wasn't much help, either. Oh, you have a Regional case? You're fine. and then we broke his arm trying to stop him from "falling." That's when I started looking at homes. I couldn't do this anymore. His life was in danger, his physical safety was in danger. I needed someone who could take care of him, someone who could protect him, to keep him safe from his autism. I knew if I kept him, he was going to die.

I called the Regional Center. and was ignored. I called her boss and I cried. I begged. I got an appointment.

It was a hard time. Dark days. The darkest we had ever had, even darker than the time leading up to his medical diagnosis- which I thought at the time had to be the lowest of low points- and I didn't see it getting any better for either one of us in the future, year by year it was getting worse. I needed help but there was no help.

Until I heard about this thing called Least Restrictive Environment, until I learned that the school lied to me again- that there was a Special School, and how to prove that the Special School would be the LRE since he was confined to his classroom, unable to attend even art or music or PE, barely handling lunch, eating in his classroom at times, and endangering himself at recess with his tendency to wander.

Then I got mad. Even madder than they've made me so far with not following his IEP and trying to push us around and blaming me for everything that was wrong with my children. I got mad at the lies and the fights and the lack of information and the abundance of ignorance and decided that was IT. I'm not going to take it anymore. Failure is not an option. I spent that year working to get him in the Special School.

The next fall, Alex started at the Special School and I found Autism Daddy. Through Autism Daddy, I found a whole world of autism. Autism Daddy gave me hope where there was no hope. He gave me a connection to people I never would have met, connections that lead to real information.

In the Special School... there are rough parts, we're still learning... but I feel more supported than I've ever been. There are people there who are willing to work with me. to listen. to explain. They work hard to be everything Alex needs. He's getting the full school experience- everything there was made for him, for kids like him. He has PE and music therapy, he makes beautiful art, he eats in the cafeteria, his playground is fenced in. They work on life skills like working in a workshop and cooking, personal hygiene- they practice brushing his teeth every Wednesday. There is as much focus on teaching him to live as there is on academics. He goes on field trips- fishing and bowling and to Cici's Pizza. Every person in the school knows what autism is and is trained to care for and teach children with special needs. I don't have to fight. ...well, don't have to fight about anything but staff change. but we're working on that. I'm going to pretend I didn't hear the teachers at curriculum night utter those dreaded words, "if your child gets a new teacher..." *breathing* and moving on...

That winter, I started blogging and I found you. You share your experiences, my experiences, you've been there to share my joy, my sorrow, my anger, and your own. Over and over you have told me that no matter where we are at, we are not alone.

and look at us now.

Look at him go.

My baby, my big boy. He's happy. He's content. He loves school, he loves home. His report cards have gone from line after line of "No Progress" to line after line of "Progress." This year he asks to go to school, he smiles about who he's working with, he's paying attention in class, his only behavior at school is dropping, and yesterday he only dropped twice. He has no behaviors at home, I was even able to take several steps away to yell at his brother this morning without him bolting for the street. He's arguing with me over bed time because he "no want to."

He is safe. Safe at home and safe at school. Protected. Taken care of. His needs are being met at home, at school, and out in the community. We can go places now. Do things. I can even leave him with a babysitter for short periods of time.

Thanks to you,

Thanks to Autism Daddy,

Thanks to the Special School,

I found my son. I found my path. I can see him now, as the person he is. I'm no longer a color blind person trying to solve a Rubik's Cube, I am Alex's mom.

I haven't heard from our Regional Center worker in years but that's ok. We're good now.


  1. :) Sometimes it's nice to indulge in a little "take a look at you now".

  2. I'm so glad that you found your way through it all - Autism Daddy is a great resource!! I'm still trying to figure it all out almost 9 years post diagnosis #1 - there are steps forward and backwards and WTF?!?! moments but you're doing it and surviving it and your family is better for happy for you dear friend XOXO

    (Sorry I've been MIA lately...crazy at work and issues with kiddo at school and diet - I may need to pick your brain on it)

    1. Thank you. I get it :)

      and, anytime.

  3. Wow I can totally relate to this. Good stuff!! :) <3