I'm Home

Summers always seem to fly here in Minnesota. There's only a few months of the year where there's not crappy weather and you just get out and enjoy everything around you. The breeze, the birds, the sunsets and good ol' PBR and Summer Shandy. This summer has been different. This summer has literally blown past me. So much change has happened this summer and it seems like I blinked and it's over already. That's why I haven't written in a while on here. I have been adjusting from quitting my job downtown Minneapolis to being Parker's PCA and just....unwinding. Calming down and taking a deep breath. I have made it a point to go out on my patio every nice evening this summer and watch the sunset....with wine or a beer of course. ha! I would listen to some chill music and just enjoy the moment. You have no idea how much I missed times like that when I was working downtown. I now have time to take a breath, sit and take a "me moment." Before I was feeling so tired and not operational. I purposely took some time off from many things this summer (including writing on here) to just decompress and find my way again.

I have.

For P-man, it has taken all summer for him to adjust to me being home with him. His anxiety level has decreased dramatically. For example, before I quit, he would not allow me to be out of his sight. At bedtime, he knew that when he would wake up in the morning, Mama would be gone. Even explaining to him about me being at work and how I will ALWAYS come back to him...he was so scared to see me leave him for ANY reason. After three months of me being home, he has adjusted SO well and has become comfortable with our new routine. Before I quit, at bedtime I couldn't leave his bedside or stop holding his hand for him to fall asleep. Over the last few months, I have slowly moved further and further from his bedside when his medicine finally kicks in. Then last night, I told him (as he was angelically singing his ABCs as he always does when he gets really tired) that I was going into the laundry room and would be right back. No fuss, no anxiety, no tears. Just his pause between "Q, AW, ESS" and him continuing his letters. I then heard the singing gradually stop and I knew that for the first time, Parker was at ease to drift off alone. He was relaxed and calm to fall asleep without me holding his hand or sitting at his bedside. I came over to him, watched him sleep and knew in my heart I made the best decision I could have ever made. I took a giant leap for my son. He doesnt have the words to tell me what being home for him means to him and I don't need them. I see his demeanor, his anxiety decrease, his eye contact returning....his overall being and know in my heart I did everything I needed to for him. I have told Parker many times that we don't need words to talk for us because our hearts do that. He is now telling me by his overwhelmingly decreased anxiety level alone, that he is glad that his Mama is home. He told me that by the slight pause in his ABCs that he understands and knows I will never leave his side even if I am not at his bedside. That to me is something no job can ever replace. No paycheck can ever give me.

I'm home Pman. Im home for you and your baby sister Quinn.

"Happeee Bir-day Tewww Yewww..."

"Happee bir-day tewwww yewwww. Happee bir-day tew Pakeh...Happee bir-day tewww yewww. Yaaaay!"

Parker loves singing 'Happy Birthday.' I hear him singing in the car, at home, in the tubby...you name it, he's beltin' it out anywhere he can. He loves singing SO many songs. He sings more than he talks to be honest and 'Happy Birthday' is on his top 10 list. Thing is, I want him to understand what birthdays are and that they are very special days. He doesnt enjoy a lot of people around him or to be the center of attention. He likes the very opposite pretty much. This year for his birthday, I wanted to scheme a way to let him know that his birthday (July 12th) is a very special day and that it's a day all for him. I know it is hard for Parker to identify special occasions like other kids would. Birthdays, Christmas, Easter baskets, etc. I didnt want him to feel uncomfortable or anxiety but still recognized and celebrated. Let the scheming begin....

So the night before his birthday, I ran to the dollar store and picked up packages of balloons and some window markers. I wanted to have visuals for him that something was "different" about that day. I blew up balloons with Louise (AKA "Weezie) after the kids were asleep. Almost 2 bags of balloons and a few explosions later, I filled his bedroom with balloons. Right from the get-go I wanted him to see something fun and giggle. I mean, what's a birthday without an abnoxious amount of balloons?! Then I wrote on the bathroom mirror upstairs "Happy Birthday Parker!!" so that he would also see something different in the house. Something bright, colorful, and just for his birthday. Parker really doesn't play with toys so Tim and I got him mountable lightsabers to go next to his bed. They're remote controlled and make noises too. Pretty badass if you ask me. HAHAH!

When he woke up (at the insane hour of 1:30am), he just walked right through the balloons to our bed. No real reaction at all. Honestly, I was kind of glad because the LAST thing I wanted was for him to be playing at 1:30 in the morning. So when it was time for everyone to wake up, I grabbed as many balloons as I could and dumped them all on him. There!! He started throwing them! Excellent. We then went upstairs where I made him some birthday waffles. Washing his hands in the bathroom afterwards, I showed him the writing on the mirror. He looked and smiled.

We then went to Cottage Grove's community water park...which by the way is AWESOME for smaller kids. It's just sprinklers, sprayers and waterfalls for them to run in. Plus there's a playground, basketball courts, etc there too. All free! My kinda waterpark. Parker ran around the sprinklers and waterpads. He was so excited to be around water. He wouldnt run in or through them but he would stick his hand by them for some sprinkles. He would yell for joy, "DINOSAUR!!! DINOSAUR! DINOSAUR!!!" We went with Tim's parents, Ron and Mary, and we had to switch off who would keep tabs on him because he runs away so fast. At one point, he randomly darted off out of the waterpark and towards the playgound. In a flash he was gone running away from us. We corralled him up and played at the park til lunchtime.

When we got home, Tim went to work and I had a plan. I made a "superbed" in the living room. Sheets, pillows, stuffed animals...everything. I then made up a fort over the "superbed" and couch. "Man, this is going to be GREAT! He's going to LOVE watching a movie under here!" I heard him humming the Star Wars theme song so the choice of movie was pretty obvious. No sooner did I turn my back to pop in ' The Empire Strikes Back,' Parker was examining the fort and ripping it all down. I told him it was ok to have the sheets up like that and we will watch the movie from under it. Well, it was a sad excuse for a fort after that but it worked. :)

Tubbies consisted of glow sticks and star wars soundtracks. He loved it. He was not easy getting to bed when it did come to bedtime but luckily it was his birthday so I went easy on him....a tad.

His party was low-key and was just immediate family. Even with a small amount of people there, he still would be in the opposite place most people were. We set up pools, slip-n-slides, water tables, etc, at Tim's parents house. Since he doesnt play with toys, Tim and I asked for the money people would have spent on toys to be put into a pot to buy him a MN Zoo year pass, therapy swing or some iPad apps. Then he also wouldnt have to open presents (which he wont and gets really uncomfortable doing anyways).

After the birthday events being done, I cannot believe that our Pman is four. Four! Knowing of Parker's autism for two years now seems like forever ago but being pregnant and feeling kicks was just like it was last week. Every day he has been on this earth, he has enlightened, taught, created smiles, challenged, and brightened our lives.

Here's to you my beautiful boy. Happy birthday my Pman, my little stinks, my love. Mama loves you to the moon and back.

 

M-i-s-s-i-n-g

The fear, anxiety, horror...the unexplainable emotions that must run through a parent's mind when their child is missing. It's something that is hard for me to even process. Over the fourth, a five year old boy named Scott from Prescott, WI went missing. This little boy is not just any boy..he's a boy with autism. The dread, fear, anxiety and horror just escalated a thousand times.

Thank God that Tim and I have not had Parker go missing. He does run off all the time and is unpredictable in public. Even when he is in a grocery cart, he will randomly stand up and desperately try to crawl/jump out. He's ripped his hand out of mine in stores and I have had to chase and have breifly lost track of him. Even for those brief moments of him not in my sight, my heart sinks and I feel like I get punched in the stomach with a wrecking ball. I start to breathe hard and fast. My head goes back and forth radically scanning every place in my sight searching for him. I have blogged a lot of being in robot mode a lot of the time being Parker's mama and when this happens...I go into my 'Sara Conner' mode. I'm basically a terminator that is blind to anything and anyone in my way of locating him. It's hard to know how to address it with him running off and how it scares Mama and how it's not OK to run away like that. Usually it's hard to know what sinks in with him and what he dismisses. It still doesnt deter me from every single time in a parking lot I tell him to always hold my hand and watch for cars. It never deters me from telling him to always stay with me in stores when he doesnt want to be in the cart. I am a broken record when it comes to talking to him about his safety and I always will be. We live in a townhome and on a dead end tiny street where our few neighbors are the only ones that can even go down the street just to get into their driveways. That still doesnt deter me from not allowing him to ride his trike past 1/2 way down the driveway or in our tiny street because I know he wouldnt understand why he can't do that at any other driveway or street. I am a brick wall and broken record when it comes to his safety. We even have door alarms/chimes on every door that we constantly have on. We have the chimes on during the day and switch the alarm mode on at night. We have door knob covers that deter them from being opened but Parker has begun breaking them. He has a thing with repeatedly opening and shutting doors and when he gets in that mode, he will break the covers so that he can do so. There's never a real moment of relaxation when it comes to his safety in general (wrapping things around his neck, swallowing things etc) but the thought of him wandering away without me being there terrifies me to no end.

Now when I saw the articles and newscasts about Scotty disappearing, I had the same reaction and feelings that I get when Parker runs off. The wrecking ball to the gut, the tears, the anxiety all flooded to me. With our record setting heat and with his home being close to the Mississippi, I just felt fear and instant tears. I couldnt even talk to Tim about it because when I did, I started to tear up. He got out of their home because a repairman was at the home and didn't lock the door behind him. "He's nonverbal like Parker. He wont answer people calling his name. This heat will dehydrate him. Parker loves the water. What if this little boy wanders to the bank? Especially in this heat, he will want to splash in it. He got out by something his parents didn't do...it was by some repair guy. How will people know to approach him and will he seek comfort in them or will he be scared of them? How will this effect him after they find him? Being poked at the hosptial, riding in an ambulance, having people run to hug and hold him.... Oh God I hope they find him." I know the autism community can be extremely divided on things but when it comes to things like this...you feel the same feelings as the parents. With an autistic adult or child being missing, there are things you are petrified about  that parents of missing children without autism don't necessarily think about. They will respond to their name being called. They will approach people for help. They know not to go into a strangers car, they know to search out others and adults. Not usually the case with missing children or adults with autism.

It's been hard for me to even write about this until now...almost a week after Scotty went missing. His parent had to endure all day and all night and into the next day without their son. Without knowing anything, hoping and being desperate he would come home to them. I can't function even a few minutes of Parker being away or out of my sight let alone that amount of time. Scotty was found near the river by a dog named Autumn and his owner came running to their side. I have thought about getting a dog and training it for tracking Parker, God forbid if he should ever wander away from us somehow. The only thing is that with an actual service dog, the cost is out of the question. Who can afford a $10,000+ dog? I know we cant. Even having a harness attached to a therapy dog which connects to Parker so that he's always with us and not on a child "leash." If any of you have had to use a "leash" on your child, you know what kind of awful glares and comments you get. I always am feisty with people who make comments and stare. Bitch please, if all you have to do is judge me on the safety precautions I have to take with my son...F-off. :)

All in all, Scotty is home safely with his parents but the emotions of that day will be with him and his family for a long time. They still even are with me. I know there is a wristband for autistic children to wear as a GPS but Parker won't allow anything on his wrists or ankles. He wont even keep band-aids on. It's something that Tim and I will have to consider about his safety...what's right for him and what's most effective for him. A tracking therapy dog? Save up and get a certified service dog? Get a chip to put in his shoes to locate him if we ever had to? These are the things we are thinking about for our little "Scotty." And even though people in the autism communtiy can be very divided on topics, the feelings his parents endured are felt throughout. The outpour of volunteers who brought Scotty home is a testament to that.

I am so deeply thankful to the volunteers who brought him home safely and I cannot say how relieved I am for his family. I'm so glad you are home, Scotty. And as for what Tim and I believe is best for Parker's safety? That has yet to be concluded...

Below is the link to Scotty reunited with his rescuer and words from his family:
Scotty's Story

There You Are...

"Carlee's coming back...My how I've missed her." That was a text message I got from Tim last night. Since we never see each other, our only real form of communication is through text messages. We only get to see each other on Saturdays after Tim wakes up from working 2nd shift and then Sunday til 9:00pm or so when I have to go to bed to leave the house for work the next morning by 5:15am. We're always up earlier from Parker but bottom line....we don't see each other at all.

I told Tim a little while ago that I feel like I'm not really a human being. I'm more like Rosey the robot from The Jetsons bustling about doin my programmed duties and then unplugging for a few hours just to resume start-up mode in a few short hours. I mentioned to him in the same lame text message conversation that I missed Carlee and wanted her to come back.

Last Thursday I made a decision...the one Tim and I believe is the best for us. I put in my two week notice at my job. Now, many of you know where I work and maybe some of you reading this know me from work even. I have had more than just a struggle at work in regards to me remaining in good standing there. With Parker's sleep schedule, almost every night is a challenge but when it comes to me only getting 2-3 hrs of sleep at night...it's not even safe for me to be driving 45 minutes into work. If I get 4 hours of sleep, I trudge my butt to work. If it's 2-3 hours of sleep kinda night...I have to call in. Like I said, it's not even safe for me to be driving at that point. I have FMLA but the whole process has been a nightmare.The best way to describe the feeling is like I am a delinquent middle school kid ditching class and the teacher constantly is suspecting me of forging my parents signature excusing me from class. I am not looking for anything above and beyond but I am at least needing understanding and trust from my work. I could go on for pages about examples and how stressful it has been and things they have said to me (yes, even directly from HR) but no sense in dwelling on that. The feeling of turning in my notice has been so relieving. Once next Thursday rolls around, I am taking time to just be at home being Parker's PCA. That pit feeling in my stomach that I am a delinquent or I am at the absolute bottom totem pole in the corporate world with no chance of advancement...gone. People are already asking me questions about it. Will it be a change in our income? Yes. Will it save my sanity? Yes. When it comes to that, I can't continue to ignore my wishes for sanity, sleep, to see my hubby....yearning for Carlee to come back. She's been away for so long now and I really would like her to come back.

The other night to really embrace the concept of starting a new path, I dyed my hair violet purple all over. I wanted something drastic and something expressive...something Carlee would have wanted to do. Carlee would have followed it with an addition to her tattoo sleeve but I am too poor for that. HA! Sally's Beauty Supply stuff  for $20.00...that I can do. I searched and watched some good ol' Youtube videos and I just went for it. I absolutely love it. I sent a picture to Tim of the new 'do and that is when I received the text message of  "Carlee's coming back...My how I've missed her." He remembered when I told him that and when I read it, I let it all sink in. I cant keep putting Carlee behind Rosey. I need to learn to have my two identities coexist with one another in a balance. Right now...I'm trying to get Carlee back in the equation. I think it's going to take quite a bit of time to actually find the closest thing to a balance but for right now...getting away from corporate cubicle work, getting some sleep, being Parker's PCA, dying my hair drastically and actually seeing my hubby is setting me in the best direction towards that goal.

"Carlee's coming back...My how I've missed her." Me too, Timmy. Me too. She's comin back...