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Unanswered Prayers

My kiddos turned 11 this week. I woke up early that day and prayed so hard for them to have a great day. “Please God help Alex and Katie have a good birthday. Help Alex to cope and not have melt downs and make it a special day for he and Katie. Please don’t let him hurt himself or her”

Unfortunately, that prayer was not answered and Alex had a horrible day.

Alex’s level of aggression has gotten completely out of control this year. He has been hurting others as well as himself for months now, but this last week was just over the top. His main way of dealing with anything is to bang his head. He did it so hard this week, he gave himself a rug burn and then the next day on his birthday, he did it again on the wall and sliced his head open. He has bitten himself or someone else every day this week – including my poor mom. He bit her so hard it went through her winter coat, through her skin all the way down to the muscle of her arm. He attacks me every single day and I’m so scared he will hurt his sister Katie.

He needs help and we, as a family, just can’t do it alone anymore. So yesterday, we chose to have him admitted into a behavior health hospital to try and stabalize him. Leaving him was the hardest thing I have ever had to do.

The hospital he is in specializes in Autism. When I spoke to them last night after I got home, they said he was settling in just fine and was doing great. He could be there from a week to a month….I can’t even imagine. I’m just so sad. Katie said she keeps hearing him. I know now that my bday prayer did not go unanswered: God answers our prayers in ways that are best for us. Because Alex had that horrible day (after so many before) we finally took this long overdue step. My new prayer is that the 24 hours a day of intense therapy and medication changes will get us back our sweet boy.

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Our First Special Olympics

Today was an awesome day. Back in December, Alex started going to Special Olympics Snowshoe practice. He went once a week for only a few weeks and practiced a bit at school. The first time he went, he was absolutely miserable! He cried and yelled and fell down. I didn’t think we’d send him back. But this awesome teacher and aide at school said to give it another shot and promised they would practice with him. Well, about a month later, here we are at our very first Special Olympics Race. Click on the link below to see video!

Alex’s First Special Olympics

The day started early and went pretty quick. We arrived to a gym-full of athletes, family members, aides and coaches. Teams sat together and got their name/number bib to wear over their District 54 Special Olympics jackets. They were bundled up and ready to go. As I looked around and listened, I saw and heard many kids like Alex. They were jumping and flapping their hands, rocking back and forth, echoing movies, laying on the ground or glued to their iPads. There were also quite a few kids that had Downs Syndrome or some sort of mental retardation. (Hate to generalize like that, but I don’t know quite how else to say it)

I quickly met a nice boy named Mike. He introduced himself, asked my name and wanted to sit with me on the bleachers and asked if my hair was soft. It was adorable. If only the boys that I meet in everyday would treat me like that ๐Ÿ™‚

Soon, it was time for Alex to race! They called his name and he sat in a bullpen type of waiting area in the gym. We got him bundled up and ready to go and we headed out to the field at Lamb’s Farm. A very nice (and patient) aide got Alex into his snowshoes. Did you know snowshoes aren’t shaped like tennis raquets? I didn’t ๐Ÿ™‚ He spent a long time getting them on him so they fit just right and wouldn’t come off. And then he lined up. I was told to wait for him at the end of the 100 meter lane. The lanes were designated by orange cones and markers and the atheletes had to stay in their own lane or get disqualified. I also came to find out – which I didn’t know – that the athletes could not get any outside help from the coaches or family members. They had to complete the race ALL BY THEMSELVES. WOW!! I’m even MORE impressed with these kiddos now. I assumed they would be helped along the whole way by an aide and everyone would win something no matter what. This is not the case. The actually have some pretty stict rules like no jeans, can’t go out of the lane, can’t get any “coaching” during the race etc…

As I went to the finish line, I was already tearing up – leaving my kiddo at the starting line all by himself was a VERY prideful and scary moment. What if he didn’t move? What if he tripped an fell? What if he had a total meltdown? What if he WON!!!?

A kiddo that we knew from a before/after school program was just finishing up the race before Alex when I got down to the finish line. He was moving slow and steady, and a whole group of people, including me, were cheering him on. He stopped right at the end and decided he kinda liked the cheering. He looked around and everyone was yelling GO MAX – KEEP GOING and he just beamed. It was maybe the cutest thing I’ve ever seen. The tears began again. Soon, another athlete was walking next to him and encouraging him to finish. He finally had to move off the course to finish the race. Everyone cheering and Max looked so proud. It was really a great moment for him.

Next was Alex’s race. The starting gun went off and the 3 kids started to move. 2 of them – who were much bigger and older by the way – started RUNNING!! Alex began moving forward slow and steady. The 2 other racers finished their 100 meters in about 45 seconds or so. We all cheered them on and congraulated them as they ran. What an accomplishment for these kids!!! Alex soon appeared slow and steady as ever and was making his way towards the finish line. His grandma, Katie and I were going crazy. He had a bit of a smile as he saw us and heard the cheers from the group. With a look of pride and determination, he made his way towards me. As he came up I held open my arms and he hugged me tight. It was such a great feeling!!! For us both!!! Then, I heard everyone yelling that he had not crossed the finish line and needed to take 2 more steps, so I backed off and he finished and we hugged again. His sister was videotaping the whole time and got the best shot of him after the race. He looked SO PROUD of himself. I can’t stop smiling just thinking about it ๐Ÿ™‚ Grandma was quick to reward Alex for his hard work with a cough drop – we didn’t even think to bring his REAL motivator – Skittles!

We went inside and waited awhile and they finally called his team up to get their awards. Out of the 3 athletes, I am proud to say he got 3RD!!! He even got a bronze medal because he finished the race. Many kids that didn’t finish only got ribbons, so I was excited that he not only raced all by himself, but finished as well. I could not be more proud!

There was another race in the afternoon that was only 50 meters and Alex had the same result. Wait time for that medal was much longer and we had a few melt downs. But all in all, the entire day was just incredible. I was so happy that my mom and Katie could be there for his first race and cheer him on. I was also incredibly proud of his sister, Katie who was patient and helpful and engaged and supportive the entire day. This is almost as big of a feat as her brother competing in the race. It was a great day for both of my kids!

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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 ๐Ÿ™‚ย  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 ๐Ÿ™‚


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 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.ย  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 WITHOUTย  SHOWERING FOR MORE THAN TWO WEEKS?”ย  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???”ย  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.ย  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 orย  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.ย  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.ย  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 ๐Ÿ™‚


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” ๐Ÿ™‚

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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 ๐Ÿ™‚
  • 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 ofย  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?
  • Iย  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 ๐Ÿ™‚


Yay Straws!!


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