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. :)

Bad Afternoons

There is a common theme with my daughter. Her afternoons are usually terrible - dare I say "horrendous". She can keep her composure all morning and then after lunch she just has the roughest of times. Thankfully - she only has to go until 2:30 - so it's a short afternoon. I have literally spent the last 4 years trying to figure out better meds, better schedule, better teachers, better aides, and anything I could think of to make her afternoons good. Nothing works - and I think I have finally given up to the fact that 4-5 hours is as much as this child can keep it together.

A whole conversation

I take Phoebe to ABA therapy. It's controversial - but I have seen improvements in her overall ability to have better conversations and ask pertinent questions. Tonight - after a chaotic dinner - where her impulse control was tested - I put her to bed. Where it was quiet, and calm she looked at me and said...."Mom, Tyler and Tanner have turtles (cousins - where she stayed last night). One is a boy and one is a girl. Tanner says that his is the boy and Tylers is the girl. Their names are Molly and Jason(?). They are kind of small." To most of you this is nothing. To me this was a huge step. Most of her comments are all over the place. This was 3-4 consecutive thoughts that went together!! I praised her for it immensely...and she was very proud. Thanks to the ABA therapist.

2 Left Shoes

This day did not start well. However, this time it really wasn't Phoebe's fault. I sent Phoebe to school with 2 left shoes. They look identical - and at 6:15 am I thought they were the same. So, off she went. Well, when things in your autism world are not right - you have a bit of a problem. Phoebe had a terrible morning without shoes. I finally got there and her day was a little better- but not much. She told her teachers - "it's my moms fault." Of course it is....:) Hopefully tomorrow I don't send 2 right shoes.

Potential Predator

Ok - this post has nothing to do with therapy. This is about the potential predator that is targeting young children in Saginaw. He drives a white truck - possibly with a stripe. If you see this truck or anything looking like it--call the police. PLEASE. I fear for the kids like Phoebe - who can't understand what someone might do to them. She would willingly go with someone - or talk to someone. PLEASE- even if you don't have children - keep your eyes out for this person or anyone else who might be hanging around. Thanks.

Home again

I made it home. I am fine- my daughter, however had a royal meltdown when I got here. This is to be expected. Things that are not the same rattle her world. So - as happy as she might be that I am home - it also just makes everything different for her. For Phoebe's autism--daily routine and predictability are everything. I learn to live with these days- and know that tomorrow will be a better one- for her and me.

Being away for more than a day

I hate leaving my house. Well, let me rephrase that- I LOVE leaving my house to go on vacation, up north to the beach, or out to dinner for that matter. It's times like these when I leave the kids with my mom and dad that I fret the most. My children aren't "normal". Phoebe has MAJOR anxiety when I am gone- which causes me to have major anxiety. I am used to her quirks, her schedule, and her crap to be honest, but for my parents- it's not that easy. They aren't used to the routine, or the schedule- and it's hard!!! I appreciate that they can help me out more than anyone will ever know- but know they also don't let on to how hard it really is. For me, being the parent of a child with ASD has become routine, but until you live it - you don't really know what it is like. For that, I say thanks to all those who helps us out. (thanks mom and dad - I won't ask again anytime soon. )

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