Top Five List

Top five ways that I make Autism work for our family:

1. When the caller id shows a 1-800 number I let Miles answer the phone. The conversation that follows goes something like this:
Miles: "Hello? HELLO?"
Miles: "I have a Mom. Hello?"
Miles: "Welcome to Miles' house."
Miles: "Ummm, I fine. Yes. I have a mom."
Miles: "DAAAD. MOOOOOM. Yep. Okay."
Miles: "Yep. I find Nemo. Can you say Dori?"
Miles: "What color Dori? Say Blue."
Miles: "Good-bye"

2. I happen to show Miles how he can scrub the grout in the shower with a tooth brush and it comes clean. Occupies his OCD (and mine) for hours.

3. Entertain myself and the kids by allowing Miles to 'flap' too close to the children of overly protective moms at the park.

4. Dad can be easily convinced to eat at Pei Wei due to the GF menu.

5. Great excuse to surround ourselves with cool people who never cease to amaze me with their ability to positively affect my boy!

Happy Autism Awareness Month: part deux

Holy hell. Miles got the memo about it being autism awareness month and he is doing his part to raise awareness.
It has been a flappy, squirmy, whiny, OCD, filled month. And those are just my symptoms.
We need to make some changes and get him back on track. We do a lot of supplementing with him and lately have let that slide. It is starting to take a toll on his behavior. I do like to take him off all of his supplements occasionally and slowly reintroduce each thing. It helps to determine what is continuing to benefit him and what he could maybe do without. It is time to begin the reintroductions.
We also changed our funding from Family Directed Resources to a level one Waiver and in doing so had to change out all of our therapists. We have yet to find replacement therapists.
We were on a wait-list for almost three years for the waiver, which is not bad, considering neighboring counties have wait-lists that run for over 10 years. Unbelievable.
Now that we have the waiver, we are on wait-lists for people who except the waiver. I am still unsure if the benefits of the waiver out weigh what we were receiving through the FDR. I am waiting it out. Don't want to make any quick decisions and end up back on the bottom of that wait-list.
We have a new therapist/intervention specialist coming over tonight. She will work with Miles throughout the summer.
I am crossing my fingers that all goes well. I think it will. We know her fairly well and she is a trooper. We need a trooper.
I have seen Miles drop speech language pathologists like a hot potato. He is a rascal and can put even the best through their paces.
I guess that is one of the things that I love so much about him. He keeps us on our toes.

Happy Autism Awareness Month

Here it is already April 3RD and I haven't even wished you a happy Autism Awareness month. Shame on me.
We have so much to be thankful for. Our beautiful boy has come so far in the last several years. He has a long road ahead of him, but he has what it takes to rise to the challenge of whatever autism brings to the table. Game on.
He teaches me new things everyday. He has brought a layer to my life that would have gone forever unknown had it not been for this kid. He makes me a better person.
He is funny and loving and consistently wins the hearts of anybody lucky enough to know him.
In an ideal world there would be no Autism Awareness month, because there would be no Autism. This world does not work that way.
I can deal with autism because of him. He makes the worst days worth it. If he can do it so can I. It is with his small boy hand that he reaches out, touches my heart and says, "Come on Mom, we can beat this thing together."

Sinking

I feel like I am sinking this week. Everywhere I look there is something calling, no shouting, to be taken care of.
I started babysitting again, after a few glorious months off, and I am finding it hard to get back in the groove of having a 2.5yr old around the house. He got the boot from his last sitter for being too 'active'. I am starting to feel her pain. He has some things going on that are all too familiar, speech delays, sensory processing disorders, so I know I will stick it out with him. The underdogs need love too.
My freakin' mop, even once forcefully assembled by the hubby, is still not working.
I dread the phone call to the company. I am going to try the super-nice approach first. We will see how far that gets me.
Miles is still not wanting to go to school. I don't know what is going on with him. What I wouldn't give for a peek into his mind. Today it doesn't feel fair. Today, no fooling around. I need to be able to talk with my son. Today, I am struggling.
Miles just qualified for a level 1 medicaid waiver. It is supposed to be better than the family directed resources we were receiving, but so far it has been a lot of dead ends. None of our current therapists or doctors accept medicaid.
We do have a wonderful team of teachers who are becoming certified medicaid providers so that they can start tutoring Miles at home. I am hoping to keep him nearly full-time this summer, or at least a few days a week. I think it will be so important that he not loose any of the skills he learned this year if he is to be successful next year.
I am going to take today, one thing at a time. I need to accomplish something, or seriously, I might sink.
I read about Olivia today in Jodie's blog. She touched my heart. How could she not. See for yourself, and say a prayer.

You've got a friend in me.

I try to not be a complainer. I try to 'look on the bright-side'. I think if I didn't, I would go down. Hard.
Miles has been having an 'off' couple of weeks. He has been getting notes home that say things like, 'Miles needed a lot of extra sensory input today.'
Which means he is doing a lot of flapping and running and squeezing. He also started having accidents at school this week. He has been potty trained for over three years and I can't tell you the last time he had an accident. Until now. Four. This week. Three at school.
I took him to the doctors thinking maybe a UTI? I was reaching. Grasping at straws. Trying to supply the school with an explanation.
It was a no go. Sorry, no medical explanation.
I wish I could sit him down and say, "Hey look. Unfortunately you already have a long road ahead of you. The last thing you need is to be known at school as the pee-pants kid."
I know this seems harsh. But, that is how much I love him. As much as I want him to succeed academically, I also want him to be accepted socially. I want him to have a friend on the playground.
When I was in high school, there was this kid. His name was Lucas. He was tall and strong and he used to move his fingers in front of his eyes. Sometimes he would reach out and try to touch you. I was afraid of him. Looking back now I am certain he was autistic. Just like Miles.
I had a friend who wasn't afraid. She would always say hi to him. She would yell at people who teased him. I pray every day that Miles has someone like her to be his friend at school. Someone who is braver than I was back then.
I am making up for it now. I am not scared any more. I am so proud to be his mom. I bet Lucas' Mom felt the same way.