May’s Extremes

It’s been a crazy month full of extreme highs and lows. I haven’t written much lately because both extremes were extremely overwhelming!

We started the month off with the Autism Walk efforts – marketing committee work, volunteering, rallying my amazing team and finally participating in the walk itself. I have to say that this was the best year yet. Every year that I walk is emotional – for different reasons. This year was no different. I had the amazing support of my co-workers to walk with me. Not only did I have onsite support, I had friends and loved ones make such generous donations this year. I didn’t even have that much time to really fund raise like I would have liked, but my true friends came through for me and gave with their hearts. No words, thank yous, tears or hugs can actually show these friends how much that means to me. In fact, today I was reading about a new drug that might help people affected by autism. Because of fund raising efforts like this, companies can research and test out medication that might actually help and hopefully eventually CURE our kids!!! That’s HUGE!!! I just hope these people have some idea of the true impact of their generosity and the thankfulness that I feel.Oh, and by the way, not only was it a great turnout, we were also the only team I think in history to actually tailgate at a charity walk. Thanks to my director and some cool co-workers, we had mimosas and wine to cheer us on the less than 3 mile walk – that we incidentally never even finished   FUNN!!

After that, my family experienced some tough times. Alex did some pretty big damage to his ceiling by knocking down the can light and ceiling tile by flipping his mattress. Luckily, a good friend of mine was able to come over the same day and fix it. Then, Alex decided to make “snow” by wetting down an entire roll of toilet paper and then sprinkling pieces of it all over my house. That took about an hour and a half to clean up.

And then, the worst happened. Alex got out of the house twice. OUT OF THE HOUSE. Do you know what that means? He literally left the house and was out and about. Not in an enclosed area, not in a fenced in yard, not with an adult – BY HIMSELF. He doesn’t talk. He doesn’t communicate. He doesn’t know to look left and right to check for cars. He doesn’t know he should have clothes on when outside. He doesn’t know that 4am is not an appropriate time to drink 5 capri suns and leave them all over the driveway. He doesn’t know that Mommy would almost DIE when she sees the evidence that he escaped. He doesn’t know that I could lose him forever when he does this.

Talk about emotional low. The first time he escaped, it was truly my own fault. Katie came back from her dads and walked thru the garage door while the rest of the family came thru the front door. I didn’t even think to check the garage door because I didn’t even realize it. We went to bed and didn’t think twice. Alex has been getting up around 4 and making messes in the house but had never really attempted to go out, so I didn’t even lock the garage door.

I awoke suddenly around 6am with that weird feeling. I knew something was up. I yelled for Alex immediately. NO ANSWER. I went downstairs and I see him sitting at the kitchen table with the following FEAST in front of him: Gallon of ice cream, 2 packs of raisins, a box of Chex mix, grapes, frozen berries, cheese and a Capri sun. There was a mess all over the table and floor. The fridge was still locked though, so I was confused where the frozen stuff came from – and then I realized… HE WENT OUTSIDE. I ran outside, and to my horror, saw the open fridge/freezer with everything displaced and on the floor and a trail of Capri suns leading all the way to the street. The garage door had been accidentally left open by Katie the night before (and I didn’t even think to check on it!!)

I almost threw up. I come back in to see my (by the way NAKED) son, sitting at the kitchen table with his feast that he had prepared himself, happy as a clam. NO CLUE what could have happened to him. I cried as I cleaned up as the shear terror of what could have gone wrong and the guilt I felt for not keeping him safer.

After that, I was a psycho about checking the locks. I triple checked. I got up in the middle of the night. I checked in the morning. After I checked, I checked again. I tossed and turned, worried about it.

That’s why 2 days later, it was such a surprise when I saw the dirt.

The weekend prior, when my kids were at their dads, I had taken a few hours to do some planting in my courtyard in the front yard. I took great pride in planting new bushes and flowers, creating a pretty walkway with bricks and lights – it was beautiful to me – who was born with no gardening abilities whatsoever.

But that day, I knew it was no more. As I came down the stairs, I saw dirt all over the hallway. All over the kitchen. Mud in the sink. Hand prints on the door and all over the bathroom. There were hot pink petals near the doorway. What the hell happened???? Where did this come from, I thought. I know I locked the doors like crazy – there’s no way he could have gotten out!

But he did. He must have unlocked the door and the deadbolt to get out. He went into the courtyard and pulled out my petunias, dug up the plants and sprinkled dirt all over the entire courtyard. He then must have decided to clean it up, because I found the bathroom rug wet and rolled up with dirt all over it in the kitchen garbage.

Again – the tears flowed. This time – for longer, with even more desperation. What was I supposed to do? I triple locked. He still got out! What on earth am I going to do with this child? How will I ever sleep? How will I ever relax? How will I protect one of the loves of my life from himself!??

It was a tough day indeed. I told some friends and got some advice. I looked into an alarm system – but in the scheme of things – by the time an alarm sounds, he could already be in the street – he’s so damn fast!!

I ended up talking to my best friend and she and her fiance were over within hours to install new locks at the top of my doors that catch when you try to open. They also helped me to install magnet locks on the cabinets in the kitchen so he can’t get into those. (oh, forgot to mention, he also poured dishwasher soap and Comet all over the kitchen within 10 minutes of waking up one day). IT WAS NOT A GOOD WEEK.

So all in all, like I said – May was a busy month – full of extremes. All I can say is Thank GOD for such good friends and family members. From my friends and family members donating and walking with me (thanks work friends and family) to them listening to my worst fears coming true and being there for me as I cried out of guilt and concern (thanks Diane, Monica, Kristine and Nancy) to them coming over to help me clean up (thanks Mom) or to fix the ceiling (thanks Rich) or attach the lock issue (thanks Amy and Kevin)- I don’t know where I would be without them.

I wasn’t going to write this month because I didn’t think I had anything positive to say – but looking back, that’s all I have. I’m so thankful

Why I Walk

Our First Autism Walk

As we are approaching the 2012 Walk Now for Autism Speaks, I find myself thinking about how much this walk means to me and has meant over the last 7 years. Alex was diagnosed in February of 2005 at just 2 years old. I knew in my heart he had Autism. I knew that when he walked on his toes and flapped his hands and lined up his toys on top of the safety gate and stuffed his mouth with food and smeared his poop all over the place and screamed at the top of his lungs in the middle of the night and laughed while he ate for no reason and never said a word and never looked at me and dumped things out constantly….I knew.

Going through an Autism diagnosis in 2005 was much different than it is today. Don’t get me wrong, I think it hurts just as much, but I don’t think it’s as scary as it maybe was back then. I didn’t have Autism Speaks in 2005. We had support groups and a few websites, but nothing like today. There were no checklists or resource libraries or The First 100 Day Toolkits after a diagnosis like there are now. There were no Facebook pages, no blogs, no sibling support groups…. or at least none that I knew of, and definitely not available all in one place. And it was the scariest thing in the world. No, it wasn’t a death sentence for my child, and my heart breaks for parents that have to endure such things. But for my child, the thought of him never having friends, or showing love or getting married or living on his own and taking care of himself, or experiencing true emotions, it FELT like a death sentence at the time.

So I did what anyone would do – I grieved. I grieved for the loss of a normal childhood for my son. I was sad and felt guilt for what I may have done to cause this. I was disappointed and scared for the future. I felt like giving up. How would I help my baby? How could I ever handle this? Where would I find the strength to do everything I could for BOTH of my kids to get us through this?

After a few days of feeling this way, I realized I needed to DO SOMETHING. I wasn’t sure what it was, but I knew I had to do something or I would be useless to my family. I went to a support group. This was definitely NOT FOR ME. It was all too new, too REAL. I couldn’t deal with all the emotion and definitely did NOT want the pity. But, from this support group, I learned about an organization that was created to raise awareness and raise funds for research to figure out what the hell causes this. They were Cure Autism Now back then (now known as Autism Speaks) and they were having a charity walk in just a few short months. This seemed so RIGHT to me. This seemed like something I could DO! I joined and started asking friends and family for support. And the support was OVERWHELMING!! My friends all came out. They asked questions about Autism. They asked my family how we were feeling. They gave donations. They showed up to the walk! I literally could not stop crying that day. It was the most love I think I’ve ever felt in my life.

So, I’ve participated every year since. Every year it goes a little differently. That first year, we came out with a whole team. But the next couple years, I went and volunteered instead because I felt I could do more that way. A couple years after that, my dear niece and her friend came out and walked with me while my kids were there with their dad. The next year, friends helped me to throw a fundraiser for Autism Awareness month and came to the walk and even threw a barbeque afterwards for us. Each year, it gets better. Each year, I am overwhelmed at the support I receive – both through donations and on site. Each year, I cry for how many more people are there than the year before. So many of these families are there for the first time and feeling the things I felt that first year. But because of Autism Speaks, they know they have a family. They know they have support tools and resources and people that just “get it” all in one place. I have referred them to friends going through those scary times of wondering if their kiddo was on the spectrum or for those struggling with behaviors that seem just not quite right. Even if it turns out to not be Autism, it gives them the resources to get a diagnosis, therapy, support and help they need – whatever it is.

This year is no different. Not only is my company matching the donations we raise as associates, our department is walking in support of the cause as a team building activity. We’ve raised enough money to get a team village at the walk and several of my co-workers are bringing their families to walk on Saturday. I am completely humbled and excited and thankful for this level of caring and support. I’m excited for them to meet my family and see the amazing families in my Autism Speaks community. I am so thankful for this walk and for the support that my family receives through it. It’s really given me something to work for, to hope for and to be a part of.

Pictures to come in my next blog of what’s sure to be another AWESOME WALK!!

Sorry I can’t seem to upload the video! Will keep trying :) This is Why My Kiddo Has Abs of Steel

Alex loves to rock out – I captured this when we were watching LMFAO on American Idol

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“The Look”

We’ve had a good week aside from some mishaps with Alex learning how to unlock the laundry room and reak havoc all over the place…. I’ll save that for another blog though   Alex’s potty training has been going great, so we’ve been doing more things and going more places and my Alex was being Alex at all of these places. Behaviors that don’t even phase me anymore, seem to attract lots of attention from others. I actually find myself getting caught off guard when I get “the look” from other parents or children. I’m so used to ignoring these and going about our way, I rarely even notice anymore. But I see their point. Alex is really loud. He doesn’t talk. He yells to hear himself sound loud because it makes him feel good. He stims to calm himself. This can be anything from scratching the chair to hear the noises he can make, to flapping his hands excitedly to banging the walls as hard as he possibly can. He also dances and hums to his own little song – rocking back and forth kinda like Axl Rose  among other seemingly bizarre behaviors to the average person. All of these behaviors seem completely normal to me anymore.

It’s just our life.

Does it embarrass his sister to no end though? Not all the time, but lots of times, YES!! So today, when he started acting up during his sisters concert, I took him to the bathroom where he promptly started to wig out. People stared. They gave us “the look”. They huffed and puffed because it was interrupting them recording their kid’s precious recorder concert. I get it. If I was all into recorders, I guess I’d be kinda pissed myself. Anyway, it wasn’t how these people reacted, it was that I didn’t want my daughter to feel that anxiousness that she feels when her brother yells out or makes a spectacle of himself in public when it was HER night. Luckily my mom was with us and volunteered to take him out to the car. I felt bad that she had to do this, but felt happy to have the moment to myself to watch my daughter play that annoying instrument so well and see the pride on her face when she was done – without having her moment stolen by her brother.

I came home and ended up watching something that I’ve been meaning to watch. It appeared on the show, “What Would You Do” last Friday night and it shows hidden camera footage of how real people react to a kiddo displaying autistic behaviors at a restaurant and how they respond when one of the patrons criticizes the parents and the child.

I felt like I was watching our life. Everything from the way the guy criticized the parents to the way the other patrons tell him where to shove it. I’ve absolutely experienced both. In fact, sometimes “the look” that I described above is even worse than someone just coming out and saying something to you. At least when someone says something, you have the opportunity to educate them. When someone just gives you “the look”, you know they are thinking what the hell is wrong with your kid and why don’t you control them? How do you respond to that?

My mom one time responded classically. An older couple at a restaurant had been giving us the look the entire time we were there and as we were walking out after breakfast, they gave us this disapproving once over. My mom stopped in her tracks and looked at the couple and said, “Do you have any questions?” They just sat there – with their dentures hanging out. They had nothing to say. My mom says, “I didn’t think so” and stormed off. It was AWESOME! Seriously, the proudest I’ve ever been of my mom! I absolutely loved her reaction!!!

We’ve also had the opposite happen, where people have shown unbelievable caring and compassion. I once had a lady help me pick up a gallon of milk that Alex launched from a shopping cart in the middle of the store. She said, “Don’t worry about it, you have enough to deal with. Let me get this for you!” I even had a family pick up our check one time without saying a word to us. I saw them watching me and the kids at breakfast one day. I saw them notice me struggle with Alex but also have fun with both the kids during our meal and just living the life we live. I saw them call the waitress over and next thing you know they were gone and our meal and been picked up. I know these people must have known others in their life that struggle with disabilities and just wanted to do something nice for us. I left that restaurant in tears, feeling so very proud and thankful for this family and how they made us feel unbelievably ACCEPTED.

This video made me feel the exact same way as my mom did that day at the restaurant and the way that family did that paid for our breakfast.  I hope EVERYONE would react this way too!

http://abcnews.go.com/blogs/entertainment/2012/04/autistic-child-is-disruptive-in-caf-how-will-patrons-react/

I would like to ask you to watch this video and share it and/or this blog to raise autism awareness. I hope that sharing it encourages others to think about it the next time they are out and witness something like this and then have the courage to stand up for what is right like my mom, that family I told you about or these people in the video.

THANK YOU!!!

False Alarm…with a Side of Hope

At various times in my non-verbal son’s 9 years, I’ve had people tell me, “I swear he just said…” and then follow it up with all kinds of stuff like, “Ya Baby” or “awesome” or “good night”. The first few times I got super excited, thinking THIS IS IT! This is our breakthrough! There will be no stopping him now! If he can say one word – he can say all of them!! But every single time, we’ve not been able to get him to say whatever word or phrase it was again and definitely not in a meaningful, communicative way.

Not for lack of trying of course. We see speech therapists, have tried medications, used vibrating toothbrushes to stimulate the senses in his mouth, massaged his face, sounded out words on his cheek and hands, mouthed words over and over and over and over, given signs, provided cards with pictures for him to use, music therapy, eaten spicy foods, bribed with food, sang silly songs, ABA therapy, speech therapy paired with occupational therapy, swim therapy. We even used a therapy dog at one place.  I’ve tried begging him to just say one word. I’ve yelled – JUST SAY SOMETHING!! I’ve teased him and tickled him and cried with him when he gets frustrated because he can’t express himself…

But my baby is 9 years old and has never said any words that I’ve heard and can be physically repeated in a meaningful way. I say that because there’s been plenty of times it sounds like he said something – but is this communication or just wishful thinking?

A couple times, I’ve had people tell me that my son said “I love you” to them.

I don’t know how to insinuate a dramatic pause in a blog, but please insert one here.

Why should there be a dramatic pause? How would you feel if someone came up to you and said that your child just walked to them for the first time and then your child wouldn’t walk to you? How would you feel if someone told you that your baby said their very first words ever and they were the most meaningful words that can be spoken but they won’t say them to you?

That’s how that felt.

I’m sure these people heard “I love you” from my son. I’m sure he said it. I’m sure he felt it. I know without a doubt in my mind that he loves me too. But until he says those words to me, please don’t tell me that he said them to you!!!  I know this sounds shitty. I know it sounds selfish. But you know what? I feel like I have that right. After all that we have been through, even if I’m not the first that he says it to, I want to feel like I am.

So today, Alex’s awesome aide texted me that he said “HI” 3 times. We work on “HI” and “I” to start I love you allllllll the time, so this wasn’t completely out of the question. When we say “HI” he mouths it back almost every time, but he hasn’t yet put the sound with the motion. At first, I was very skeptical, but as the day went on I got more and more excited. His aide was thrilled beyond belief and got me excited too. I pictured me walking in to the gym to pick him up and him running up to me and saying “HI!!!” – all proud of himself. I pictured driving to my parents house so he could say “HI” to grandma and grandpa. I pictured calling his dad so I could hand Alex the phone and he would say his first word to his daddy. I pictured my announcement on facebook and my blog that would soon follow. I pictured this to be the beginning of the BREAKTHROUGH!!

I sped to the after-school program. I had to stop myself from running into the school. I collected myself as I walked into the gym searching for my newly-verbal son. I saw him laying down, not running to greet me with his new word. He got up and hugged me and I said to him, “HI”. He hugged me and dragged me around. He did the things he always does that make him mine. But he did not say “hi”. All the way home I asked him. When we got home, we worked on it with jellybeans used as bribery. He mouthed it over and over again, but it just wouldn’t come out. He didn’t say it.

And so it goes. Maybe there was a breakthrough today. Maybe he’s just waiting for the right time to spring it on me. I don’t know. I never want to get my hopes up too much just to get my heart broken. Part of me feels stupid for getting my hopes up and for wishfully believing in something he may never actually be capable of. But the part that opened up to the possibility today felt AMAZING. I felt the pride for my kiddo and the possibilities of a whole new world opening up for him. Instead of being skeptical, or wanting these moments just for me, I’m going to try and believe it can happen and wish for it whenever it happens. Even if I’m not the first to hear it. The important thing is that he can communicate meaningfully so we can start to understand each other better. That’s all that matters. Not what he says, when he says it or who he says it to…. right?

Well, except for the whole “I love you” thing. Right or wrong, I still want that just for me.

 

 

The Shower Incident

I screwed up big time yesterday. I took my daughter to a Sibling Workshop for kids that have brothers or sisters that have Autism.  It’s a once a month support group for kids where she has time all to herself without her (in her words) “‘annoying” brother stealing the spotlight, yelling, making a mess, throwing a fit or taking mommy’s attention. It’s a place where she shares her thoughts and feelings with other kiddos in the same boat. And, much to my disappointment, she doesn’t have to share ANY of it with me. She’s told that she can tell me about the activities and discussions or not. It’s completely up to her how much she wants to share – she just can’t use any other kid’s names to protect their privacy.

First, let me say how thankful I am that we found this group for my daughter – as it seems to have helped her express her feelings so much better to me. Sometimes, she does so better than adults I know that have been through therapy. I learn from her all the time. On the other hand, I feel like if I knew some of the things they are discussing, I could support them in our every day life. So, it’s the curse of she’s getting the help she needs, but I can’t really add to it at all other than just being open to her when she decides to open up.

So, we were driving home after the group yesterday and she starts to tell me about an activity they did called “Have you ever”. It’s where the therapist calls out an activity and anyone that has done it runs to the middle of the room and high fives the other people there. (Funny – I remember playing something similar in college that involved drinking – hahaha) She’s all excited telling me that she has so much in common with a particular boy, so I ask her like what? She proceeds to tell me something that made me flip my lid.

The therapist calls out – “Have you ever GONE WITHOUT  SHOWERING FOR MORE THAN TWO WEEKS?”  She excitedly runs to the middle of the room to high five other presumably dirty little kids.

I say – “WHAT? What do you mean you haven’t showered for more than 2 weeks? That’s not true – you’ve never gone more than 2 DAYS without showering???”  She is passionate in her answer when she says – “MOM, YES I HAVE!!! I’VE GONE WAY MORE THAN 2 WEEKS WITHOUT SHOWERING!!”

I can actually feel my blood boiling at this point. My child PROUDLY proclaimed in front of a group of strangers and therapists that she didn’t shower for 2 weeks? Seriously??? I can just picture everyone whispering to each other and therapists taking notes.

I don’t know about you, but I have to continuously remind my children to shower, brush their teeth, clean up after themselves, change their clothes – you know, general PARENTING.  I do this relentlessly for health reasons but also to ensure they are not the target of bratty little kids at school who like to pick on others for such things.

So, you can imagine how embarrassed I got and protective I instantly became when my daughter started bragging about this common fact. We get into an arguing match about the fact that she’s never been out of my sight for even more than a week and the 2 times she was, she was with grandparents who would never allow this type of behavior, etc…. Of course she ends in tears as we are arguing back and forth – all the while, my son is flipping out because the two of us are yelling.

And then she says it – “This is why I don’t want to tell you anything that happens at group. We did an exercise on FEARS today, and mine was that I would tell you something we talked about and you’ll get mad and yell at me.”

It stopped me in my tracks. Talk about feeling like an asshole. She just gets out of this therapeutic group where I’m dying to know what they talk about so I can support and help her, and here I am yelling at her about a stupid game she played.

I took a deep breath, lowered my voice, and told her that I would never yell at her for sharing feelings about me or  Alex. This was about making up something that wasn’t true that made her look bad and had nothing to do with autism.

But, I realize it has everything to do with autism. She just wants to have attention. She wants to have commanalities with other kids. She wants to literally be in the center of attention. She achieved that by going into the middle of that room. Even if it was for something gross.

She told me other kids went too. I’m sure their parents never allowed them to go 2 weeks without showering either, and it was just their way to feel a part of the group.  My daughter later explained to me – get this – VIA TEXT – that she was just afraid that if she told me about her feelings, that I would just stick up for Alex as usual and explain Autism or that he’s “special” and not listen to her feelings.

We had a good talk (in person, not text) and I explained again to her the difference between my reaction over the shower incident and how I would act if she told me about her feelings about Autism.  I told her she can tell me anything and I would listen and try to understand and keep my “sticking up for Alexness” quiet.

PARENTING FAIL. UGH…… when does this get easier???

And then, I told her to go shower

Weird is the New Normal

I’m excited that a recent blog I wrote about life with Autism was used in an amazing viral movement by my friend “Parenting with Asperger’s Syndrome” to help kids with Aspergers know that Weird is the new Normal. We’re all a little weird and it’s okay. Check it out here and comment if you want to share what makes you weird too

http://parentingwithaspergers.blogspot.com/2012/03/weird-is-new-normal.html

He Loves Me!!

My son seems to have found a way to tell me he loves me ~ I gave him cookie dough ice cream for dessert and he left all the cookie dough for ME!!! That’s almost as good as a verbal “I love you”

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Is It Weird?

Do you think it’s weird that…..

• I can tell that it’s a full moon just by the way my son acts the night before?
• I wonder if he is part vampire because he can look at you with those eyes and make you do whatever he wants and occasionally bites me?
• I am SO proud when my daughter interacts with my son that I actually tear up?
• Everyone I introduce Alex to falls in love with him, or am I just making myself think that?
• I try to do twice as much to make my daughter feel as “special” as my son? Even though I’ve tried to explain to her, she doesn’t want to be that kind of special, she still gets jealous of the attention he gets.
• I fear rude and ignorant reactions in stores and restaurants when I go out with my son because I don’t feel like dealing with the sadness that it brings or the sheer anger that it invokes in me?
• When someone is acting socially awkward or that I just don’t get, I assume they must have autistic tendencies and instantly have patience with them?
• I get excited when my son follows a simple direction like “Get Your Shoes” without having to show him what shoes are every time?
• When my kids are laughing, I will do whatever it takes to keep them laughing for as long as possible? And let me tell you – it can get pretty embarrassing
• I’m jealous of other people’s kids that are in cub scouts, swimming and tee ball?
• I still let out a high pitched GOOD JOB ALEX with genuine excitement every time my son stays dry after going out on a short car ride? (He’s 9)
• I sometimes yell at him and say, YOU’RE 9!!!! COME ON!!!!
• I get insanely pissed if my daughter lashes out at her brother out of  frustration and then feel unbearably guilty because of it?
• I strategically place food that isn’t difficult to clean up out on the counter so if he wakes up at 3am for a snack, I don’t have to clean up as much in the morning?
• I sometimes hide in the car to make a phone call in peace?
• I  wonder if Alex is just taking it all in and going to write a tell all book one day?
• I have locks on almost everything due to learning the hard way that Alex WILL get into it, even though he never has before? (see blog post about contacts, chocolate, etc…someday I’ll write about the paint, mud, water and bleach too)
• I think that people that work with special needs kids are literally angels walking on earth?
• I don’t let myself think about the future because it’s too overwhelming and instead choose to remain oblivious and enjoy today?
• I will absolutely never ever give up on trying to get Alex to say I love you every single night before bed? I mouth it to him, I yell it, I whisper it, I try to move his mouth to say it, I sign it to him, I sing it… still nothing.
• Do you think that it’s weird that I have total hope that no matter what happens today, there’s always tomorrow?

Me neither

Weekly Whirl – World Autism Awareness Day is 1 Month Away!

Weekly Whirl – World Autism Awareness Day is 1 Month Away!.