Autism and the Sun

Many years ago autism was my sun. My entire world revolved around it. I ate slept and breathed it. Autism  ate me from the inside. It was like my own personal zombiepocolypse! I couldn't go a moment without it intruding onto my thoughts, my heart and even my dreams. It was the center of my universe.

That was a lifetime ago. It isn't that way anymore. It is now just a moon trailing around my lazy little planet full of chaos. It's there, but it only comes out when it is dark. it hides when I am not looking at it. Sometimes i forget it's there. Until it gets dark and then all bets are off.

I look forward to the day when it's just a distant twinkling in the sky of some far off star. When the moons around my little planet are just my babies.

Someday...


But until then I watch the moon each night as it waxes and wanes. I sit in silent awe of the beauty and stillness that can surround it. I listen and I feel and I hope and I dream. I know that even if it is always so close I can taste it, that it will all be more than ok. Because this... this is my life, my world and I say so.

I can't help but smile at my boy when he gives me his goofy grin, just like the man on the moon. He's there even if you cant always see him

I am not a Martyr

When I talk to people out in the community about Sam I always get the same look.  Other special needs parents know the look I am talking about. The look that says "OHYOUPOORTHINGIHAVENOIDEAWHATTOSAYNOW" and is almost always followed by "everything happens for a reason"  or "God doesn't give you more than you can handle"

I know people just want to be nice or say something clever and sweet, but we have all heard it.  I think , personally, the tone used upsets me more than anything really.


I don't want to be your martyr, I don't want to be your poor thing. I want you to understand that this is not a death sentence, it's autism. We live with it every day. It sucks and it's hard but that is ok.

For Granted

When you have special needs children , you don't take things for granted the same way other people might. I don't assume my kids will walk and talk on time. It's always a huge relief when they do. I watch all the kids move through their developmental milestones and I check them off my list. Like a constant imaginary check list only I can see.
eye contact ...ehhh check
play skills .. yup check
responds to name... check
points... CHECK!
I still watch with an over critical eye. Nate has some weird things he likes to do. I worry I am missing something. he will screech for no reason and then go back to playing. He will verbally stim on silly words and get stuck on other words or sounds and just repeat them. I find him lining up stuff and he can be so very rigid in his thinking. He has sensory issues and hates socks just like Sammy too.

It could be personality. He is a headstrong little guy. He is too social for me to really worry. He warms up slowly but once he is comfortable - watch out! I am so scared I am going to miss something. How much is just what he has learned from Sammy? How much is just adaptive behavior to deal with the chaos that Sammy brings to our house? How much is an issue?

What if I miss it again?

I watch Grace and I go through the same list. What if I am wrong? Again.

The upswing to this is that every single milestone seems so huge. I am aware and focused on them. I enjoy watching the children work to acquire the new skills. It's like every day is Christmas here. I don't know if I would ever have thought this way without Sammy and his issues. How can someone feel so happy and so sad at the same time? Nothing in life is ever just sweet anymore though. There is always a bitter edge to any accomplishment.

I have been watching Nate slowly pass Sammy and that is getting difficult. Sammy can see some of it and he is frustrated too. Sam works so hard, it's just easier for Nate. What is going to happen when Grace passes Sammy too?

Until we get there I won't worry too much. I will just try to relax and enjoy where we are. I don't assume tomorrow brings anything, but I am always hopeful.

The Mystery of the Disappearing Pants

Sammy has some sensory issues, well a lot of sensory issues actually. He has a lot of rules for clothing, especially pants. His pants have to have a drawstring, be soft, no buttons (not even fake ones), elastic waist, he prefers them to be blue and they cannot make any noise. I bought 5 of the same pants to add to his other 3 pairs he would agree to wear.

 I am down to 2 pairs. I don't know where they are going but they aren't in the laundry, or in the bathroom, or in his room... or anywhere I can think of. God i hope he isn't throwing them away!
We had a similar issue with his socks. he would go to school with them and then come home without. It took forever and some stealth work but we figured out he took them off at lunch and threw them away. He obviously cannot do that with his pants.
So where are they going?

The Bunny Baby

Our neighbor's have a cat named Rylie. He is a great hunter. He leaves us mice and bird halves all the time. This is the cat that would scare Chance just by looking at him. Chance doesn't seem too spooked by him these days thankfully! Well tonight I heard my  neighbor yelling for my older kids. I assumed Sammy had gotten out and was having an issue. I knew it was quiet possible that Sammy was just outside ...naked

Turns out the cat caught a bunny. Itty bitty baby bunny. Poor thing is hurt and has some superficial  wounds along its body and its head. It's  the sweetest thing I have ever seen. I didn't know what to do. Then I thought Cat the Dog Officer she will no doubt know what to do. She is awesome! We called the animal control officer but her office was closed. Then the vet down the street that wouldn't touch it because it's wildlife. then MSPCA and then a wildlife rescue. lots of messages and such.

Sammy has fallen in love with the bunny. He was holding it and talking to it. He can be such a ray of total sunshine here. I just hope baby bunny makes it through the night since it will be the first thing Sam looks for in the morning.

Sunshine

Sometimes I get rainbows with Sammy. It's as if the windows fly open on a warm summer morning by the ocean. The breeze comes in and calms my soul, quiets my mind and helps me to see the flowers that bloom in my life. Flowers like my precious boy, so proud of himself.  He cut his hair, all by himself.

I was so frustrated at first, and also pretty angry! He was a little sad he cut his superman curl (the curl under his bangs and the only curl on his entire head) He showed everyone how he cut his hair all by himself! I have never seen that boy so proud of himself. He went to school with it as is since he wont let me fix it. I really hope the kids don't tease him.

He was giving out shopping carts at Market Basket yesterday as well, just so he could let people know that he cut his own hair.

fluffy head before

after ~ with daddy's glasses too!

I am blessed with a boy who has sunshine moments inside of some rather dark days. I am blessed with a breeze today.

Level of frustration

I am back at work this week for the first time in months. I have the most amazing sweet family that I am working with and the most beautiful little itty bitty babies. For those of you new here I work overnights for So Many Babies. We work with twins and triplets overnight and help moms and dads manage their nights with multiple babies. I like what I do. I just dont like being tired all the time. Being the first week back it's been hard here.
my level of frustration is rising and I can't get ahead of it. Yesterday as I napped, Hubby had the kids totally under control. Or so I thought. Sammy came up just a bit after I fell asleep with his hair clumpy cut short. I cant win I guess.

The Car in Front had My Heart

One of our cars (The Mazda) died on my way to work last night. In fact I was 1.7 miles away from my destination. The car didn't care it just revved loudly but would not budge.  I left it in the gas station parking lot that it was so gracious to drift into. I walked the rest of the way to work since it would take longer for my husband to get me than it would to just go to work since I live well over an hour from the family I am helping right now

begin comedy of errors...

My boss was going to pick me up in the morning so at least I could get home. She was also going to drive me tonight since she was going the same direction. My husband called and reinstated our AAA that we had cancelled a few months ago. He would pick me up from the park and ride and bring me home , go to work late, and then go meet AAA after work.

My mom had the kids. Dan forgot to pack Sam's lunch. I had no car. My mom saved the day and brought him a lunch. I was so tired from working overnight that I was cranky with Nate. I may or may not have lost my temper when he woke her 35 minutes into her nap. I had to deal with some other work drama and figure out how to get home the next morning without making hubby late.

He called me on his way up to the car and asked where the keys were. I swore and cussed and cried, convinced I had them (turns out I left them in the ignition). I was a mess and just couldn't stop the panic. He came home. He rented me a car. he saved my ass, as usual. Thank GOD FOR MY LEVEL HEADED HUSBAND!

He got the children in the van (well Sammy and Grace anyway. Nate fell asleep beside me while I napped before work) We all drove towards my work. It was raining so hard and I was a nervous wreck. Weather of any kind makes me on edge. I suddenly pictured an accident and Sammy not being buckled. My heart raced and I got very nervous. All I could think was part of my heart is in that van. Sammy, Grace, and Daniel. The entire way up I just kept thinking how odd it seemed to watch my heart outside my body traveling away in the van.