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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!!!

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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. 🙂

 

 

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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.  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 🙂

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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

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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 🙂

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


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

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My Newest Edition to Fort Alex!


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Yay Straws!!


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