Summer

I have to have the summer off. Not for selfish reasons, or for the fact that it's so nice out- and I want to be at the beach. It's much deeper than that. My daughter is autistic. Pure and simple (which makes me laugh out loud- because nothing could be more complex.)....she needs me. Is it good for her to be with a sitter? Yes. It is good for me to be out of the house? Yes. The problem is... I can barely make enough money to cover her care- and the care for my son during the summer. And, she needs me. No one understands the complexities of her- except for me. I want to be there, to help her through the most difficult times (sometimes it's the passing of a thunderstorm in her world). I give her confidence that life will be ok.

My decision...is to quit my job, and get a teaching certificate. Laugh if you want...because now is not the greatest time to become a teacher. But, I need to have summer off...and I need to be able to be with my family. I will find a job working with children- and I know I will be a damn good teacher.

My daughter is autistic. Nothing more needs to be said.

In our "autism" world- I still have to watch Phoebe while she takes a bath. I can pretend she is independent, and will wash the soap out...however, it NEVER happens. I finally gave up. She can go to the tub for a relaxing bath- but to get clean I have to supervise. She says the same exact things she said when she was 4...."can I open my eyes with this shampoo mom?", and "I have to wash my butt." All very matter of fact questions- that she has learn to ask through her scripted life. Just like the same questions she asks when I get home (and has since she could talk)..."what are we doing tonight, and I don't like _____(fill in the blank) for dinner, I just want a sandwich." I have learned to ignore most of it- and I can't say I even hear it anymore.

One of my favorite stories about Phoebe is when we were on a plane to Yale University's Autism Clinic 2 summers ago. I let the airline know that there was a special needs child aboard, and that she could get very upset. When they announced it...it went something like this..."good afternoon, passengers...we'd like to inform you that there is a child with special needs aboard, and please be sensitive to her and her needs." Phoebe looked at me, and around her and said..."WHERE?" I laughed out loud and said..."I have no idea."

I guess it's only her mom that really knows she has special needs- to her, she's just Phoebe.

Everyone is growing up

I think my son has finally turned the "autism" corner. He is no longer nearly as agitated as he used to be by his sister. Recently, I was SCREAMING at Phoebe to calm down during a meltdown to which I heard..."Mom? How do you expect Phoebe to calm down when you are screaming..Calm DOWN!" Wow- that was a reality check at it's best. I had to agree with him. He is completely right. I have put tremendous pressure on this child- unintentionally. He has an absent father (for the most part), and a sister with special needs. I worry about his growth, his sensitivity, his happiness, and how he will cope with all this pressure. Then he looks me in the eyes and says things like..."MOM..hello it's autism...remember? And I have to agree with him. I think he may actually be starting to understand it more than I do. What a strong person he is and will be. Thanks little man...you make life so much easier to deal with.

Back to reality

I am excited to get back to the real world and work a full-time schedule. In the back of my mind, I wonder how this will all work, and hope that all goes well. Who am I kidding? This is autism - and it never goes as planned. I am lucky to have a great family that helps, but don't really want the burden to fall on them, so I will work hard to make it work. In this world of 1 in 100 kids - I would hope to think that companies, and people are starting the hear the word "autism" more often, and start to understand it's complexities.

The strangest part about all of this is, that if Phoebe could put in to words how she is feeling about all this--I believe she would say the same thing. She is excited to get back to school, be on a schedule, and hopes her anxiety doesn't get the best of her.

Maybe we aren't really that much different. Here's to a good year. ;)

Trying new meds

Trying new meds for this child is like picking out a needle in a haystack. We are starting on a new trial of meds- and so far so good. Not sure how its going - as I never can really tell huge changes. Maybe because I see her constantly? No one understands the difficulties it takes to raise a child like this - let alone a sibling who is considered "normal". While I spend time with both - I notice that her brother is needing more and more attention as well. He wants me to play with him, color with him, games, sports you name it. It's very hard to spend time with both- without feeling guilty about the other. Don't get me wrong- the younger, "normal" child gets the shaft..and he probably always will. I'll figure this one out too. Just like everything else for them.

Puberty

For the last year and 1/2 I have been getting my daughter shots to keep away the dreaded GIRL curse. Well- after a huge weight gain, I decided it was time to let "nature" take it's course. This week, it decided to show up. Phoebe is 11 years old (barely), and mentally about a 6 year old at best. She is 5 feet 4 inches, and weighs about 150 pounds. We came up with a social story- and a plan, and for the first time I think I am more bothered by it then her. I called 3 times the first day at school to see how she was, only to find out she was great. She's been less moody than normal, and actually almost pleasant at times. Could this be coincidence? I guess it's time for this 'tism mom to be upset about something that a normal girl would go through - and not blame it on the disorder. Darn.

Long Weekends

Those of you who have kids with ASD know how the weekends can be. My kids are supposed to be with their dad on the off weekends, which hasn't been happening much lately, so I am put to the test. The routine of the weekend is very disruptive for most of these kids. There isn't school, and they have to adjust to the 2 day change-over. We routinely have movie nights, with popcorn and sleep outs in the living room....but this too can get old. Nights can be rough- so we avoid sleepovers and friends over to avoid conflict. Weekends are usually family time for most people - and this is also true for us - but also our most difficult time- as I am sure that my kids both have ADD and need constant movement. So - each week I try to come up with a plan that will work for all of us - but in the end, I am so glad when it's Sunday. :)