Sorry Mama

As a mom, a parent with a son on the spectrum, its easy to get lost in our own lil world. We happily bounce along and do what we gotta do. We may do it differently or even look different as we do it, but we do it.  We do *do* the same thing everyday, (for the most part). Its said that routine is a huge part in the progress of ASD kiddos. I on the other hand, somewhat disagree. I mean think about it, all of us live by routine really, we wake up every morning and eat breakfast soon after, go to work/school, have lunch, take a nap(okay, that's not fair) eat dinner, then go to bed and start all over. Does Bman care that I gave him a bath before his breakfast?? Nope! Does it bother him when I read him a book before dinner instead of bed?? Nope! I think living by a super strict routine is actually doing your child a disservice. I know, from experience, that routine at least in this ASD household doesn't matter. He actually does better when he cant predict whats gonna happen next. He learns, he grows. Putting his 'not so strong' skills to the test, only strengthens those skills. Ex. When we first started OT and speech, he'd scream, bat his arms and try to run away. By the second month, he was giggling as he saw his therapist through the door window. You don't start a new job, and then on the second day, make a mistake and quit. YOU LEARN!!! You get re-directed and you try again.

Instead of giving in to the outlandish behavior our asd kiddos can present (which I see often) stand your ground. Don't think they'll hate you, and/or resent you in the future for saying "no" or for expecting them to do something. They *are* children, and as children, they need rules, guidelines, held to certain expectations.  I hold Bman to certain expectations. When your done eating, put your plate in the sink. If you want to play the Kindle, ask! I encourage him to "use your words" it takes him 5 seconds. But he always finds a way to spit those 5 beautiful little words out...."I...Want...To...Play...Games. If I gave in, and always just let him have it, in fear of a meltdown, I'd get one every time.  He would know how to act, to get a certain reaction out of me.  Of course there are times when I feel bad for saying no. Or I absolutely knowwwww, he didn't understand the words that just came out of my mouth, so I tend to be more patient in those moments.  I feel as a member of the ASD community and witnessing how other parents handle their kids, I'm definitely the "mean mom"; and you know what? I like it that way.

It feels good knowing I'm still the adult, I still make the rules around here, and they obey. Its taken A LOT of hard work, patience, and a few mistakes made by yours truly, but I refuse to let a label keep my funny, adorable son locked in his own world. I'll join you, and hold your hand through the bad times and laugh through the good. We had a bad moment the other day while at Circle K, (mommy needed a soda bad) lol We walk in; mind you, I have Benji in the car seat slung over one arm, and Bmans hand in the other. As I get my drink he bolts it....before I knew it, he ran behind the counter, and I mean alll the way...like to the complete other side. I mean, really though, who can resist swinging doors???

As I say his name in my 'mom voice' I hear the courtesy clerk say to the other clerk, "what a bratty, undisciplined lil shit" ....the two teenage boys and their mom, who were in front of me, were giggling too. I mean, yeah its funny, to you. I had to keep my cool, cause man I was ready to unleash the beast. Did a child run into an area where he shouldn't have been? Yes! Did said child have any clue that he shouldn't have gone back there?? NO! I can almost guarantee that you ALL have made a mistake one time or another. I don't normally shout from the rooftop, "my kids disabled, cut him some slack" but I did. Out loud, in a defensive mamabear tone, I said, "He's disabled and its not funny" grabbed my free Dr. Pepper and walked straight outta there. As we were getting in the car, I told Bman, (who was upset I made him stop swinging the door) that it's okay he was upset but he had to listen. He said "sorry mama" then proceeded to sing along to the Lion King song that was playing. Just goes to show that as many times as you go into a Circle K and have a 'routine' is doesn't matter. These awesome, intelligent minded gifts are gonna do what they want regardless... work with them, not against them.  The real world throws curve balls and he'll be ready.

Bman's DX: The Change

So the first few months after the diagnosis were rough. I was in denial, and didn't want to believe my child wasn't "normal". I think going through the process, the process of loss, hurt, grief was essential for me to become the mom I am today. The loss was the 'idea' of a perfect child. (I know plenty of neuro-typical kids who aren't perfect) No one is perfect.  The hurt was of course, feeling like there was something I did to make him this way. Like, it was my fault somehow.  And for grief, I think it was mostly about having a certain expectation of what being a mom was, or parenting all together. My job as mom was going to be ten times harder with the obstacles Bman's diagnoses brought forward, and I wasn't sure at the time, I could do it. I was scared, nervous, always questioning MY abilities and strength.

 Sharing with family and friends that he had autism was slightly difficult too. Although I'm ashamed to admit it, I was embarrassed at first. I was embarrassed because Bman had certain behaviors I didn't know how to explain. And even if I did try to explain, no one ever truly understood. Many people followed with (even after the diagnoses) that I was "being over dramatic" and he "was just fine" and to "give him time".  No matter where we went, people would just stare. Have you ever gone somewhere and had people just stare at you??? Its uncomfortable and awkward. The dreaded "he doesn't look autistic" statement ruffles my mamabear feathers so much. I want to reply back with, "yeah, and you don't look ignorant" haha. How do you know what autism looks like? Do you have autism?

I knew from that point on, during the first few months afterwards, that my perspective HAD to change. I cant allow other people, to act as they know more about my son then I do. I cant allow strangers ugly, uneducated stares, hurt me and my boy. I cant let the doubts whether I could do it, keep me from trying. I had to protect him, support him. Teach him that there's nothing wrong with him, he's just different and that's okay.  So what did I do next? I loaded myself up with ammo. I did more research in this short amount of time, then I probably did in HS all together.  I learned a lot, and knew I would change.

My outlook on life was so different. I didn't stay home anymore instead of going to the library, in fear of getting stared at, I still take both boys grocery shopping with me, they enjoy it, I enjoy it. (Bman LOVES the store) When we go to the zoo, instead of making sure Bman was always in the stroller, I let him out as much as possible; was he flappily walking by the 40 flamingos, yes!! Was he stimming back and forth on the elephant railing, yes! But he was happy, I'll never take away his happy moments. I will never allow someone else, to take away his happy moments. Those are his, and I'm glad he shares them with me.

 I wake up everyday and ask myself; "What's going to make him happy today?" If you answered Mickey Mouse Clubhouse with bowl of cheerios, you're right. But I think past that, when I pick him up from school and he flaps with excitement as he walks around the corner and sees me and his bro waiting for him flapping back, THAT makes him happy. When I read him the same book for the 1000th time that day, THAT makes him happy. When I let him repeatedly open/close the doors in the milk section at the grocery, THAT makes him happy. Be the change for your kids. Be the change in how the world accepts diversity.

"Why be normal, when you can be yourself"

Brayden: Getting a Lil Bro

As some of you may already know, I have TWO boys. Bman is my oldest (with autism) and Benji is my youngest! I'm so in love with both of these crazy kids I cant even stand it. Don't get me wrong; the hard days definitely suck. (I end those with an adult beverage..or two) but with a little change in perception, anything is possible.

Lets back up to when we first found out I was expecting baby #2. December 8th, my dads birthday, we(mike & I) walk out of the doctors office holding hands. I remember saying "OH MY GAWD!!!" to be exact... we were so excited. Boy? Girl? Should we wait? Who do we tell first?

That Christmas, we blew up a bunch of balloons, put them in a large box with a note inside and wrapped it. We had a chosen person to receive said gift and read the note out loud to the family. The note read as follows:

"I do not have a face to see,

or put in side a frame.

I do not have soft cheeks to kiss,

I don't yet have a name.

You cant yet hold my tiny hands,

nor whisper in my ear.
Its still too soon to sing a song,

or cuddle me so near.

But all will change come August 2015;

That's when mom says I'm due, 

I"m your new family member,

and I cant wait to meet you.

All I ask between now and then,

Is your patience while I grow,

I promise I'll be worth the wait, 

cuz of all the love we know.

So what I have to give you now,

is a wish to you from me, 

I can't wait to be a part of

this wonderful family."

As my sister was reading it aloud so everyone could hear. I look over and see Bman, he doesn't know whats going on. He's cuddling with dad in the back corner covering his ears because the noise; crinkling wrapping paper, laughing kids, new toy sounds. As I sit there, my heart breaking. I asked myself, "How can I be happy?" "How do I tell Bman there's gonna be another baby?" "Will he understand?" "What if having another baby makes him regress?" "Will he still know I love him?"All of which I'm sure are 100% normal, right? 

Time goes on, as it has a sneaky way of doing. I did my best to prepare Bman for baby. Made sure I explained that I'll need his help. That big boys get things that lil boys don't. (like chocolate milk) And we have to be nice. When Benji was born; of course, back were the tears, tears of joy and fear. Although, this time I wasn't afraid of parenting and all it comes with, (okay maybe I was) but at least I've done it before. I at least knew what to expect even though I knew wrangling two kiddos under 3 was going to be a challenge. 

I was fearful because he didn't start crying. All the nurses were quietly mumbling as they hover over him; my beautiful, seconds old baby. I saw Mike pacing back and forth, white as a sheet. He kept peeking over at Benji, then would look at me, throw his hands up in anger, as neither of us knew what was going on. As the tears continued rolling down my face, all I wanted was my baby. To hear him cry, to hear the nurses reassure me everything was going to be okay. To touch him, to kiss his lil forehead. 

Moments later, they handed me the second most precious lil human I've ever seen. His eyes were open. Feeling much better after the umbilical cord was unwound from his neck. We were so happy. Happy to have our sweet angel in our arms. Happy that it was all over and we soon would be able to go home. 

 Skip ahead several hours and every new mothers worst nightmare came true. He wasn't eating, he wasn't crying, he wasn't pooping that special newborn poo. Something was wrong. As the nurses took turns trying to get him to latch, and be interested in eating, I just soaked up the moment. Holding him in my arms and staring into his luscious blue eyes. He was perfect. Before I knew it, they were taking him away to draw blood. And in true mamabear fashion, I followed. You were not taking this sweet baby away from me again. The nurses did their thing, trying to be as polite as possible. As I'm waddling around waiting to hear something back, one of the nurses looked up from the IV table. Glancing my way, she looked pained, her eyes almost filled with tears. I'm still not sure what she was trying to say, if anything. Maybe she experienced something similar and it brought back feelings. Maybe she knew something I didn't and was trying to warn me. Mind you, all this took hours to accomplish. Paperwork; you sign here, I'll dot there. More waiting. Come to find out, now they want to do x-rays on his tummy to see why he's not hungry.

Hours later they come and tell me my baby has to be admitted to the NICU. I about almost died. My heart sank so far down, I never thought I'd function the same again. Mike and I were both speechless. As they roll my baby away, I breakdown, terrified, robbed, clueless. "Whats going to happen?" Whats wrong with my baby?" After numerous x-rays they discovered air between his bowel walls. Fatal in premature babies. At that moment, I was thankful he (ben) was stubborn and didn't come until after his due date. After a week of antibiotics, multiple iv changes, a picc line and all the emotions that go along with it, we were in recovery. One more week after that, and the rare disease he had was gone. G-O-N-E!! As a full term 8 lb 8 oz baby he was born with one of the most rare cases seen. He was in the 1% of kids who develop this condition in the womb, rather then the normal 2-3 weeks old. All his vital signs were tip top, everything else was perfect. We're still so thankful for the docs and nurses who protected and saved our lil man. Those two weeks were the longest and most scary of my entire life. I've never had to ask so many difficult questions. I never thought, 9 months ago, I'd have to ask if my son was going to survive. Still to this day, we will always remember that last stay at Chandler Regional Medical Center, visiting him everyday and praying we could take him home. 

Once we arrived home, I was so overwhelmed with happiness. My bed, my food, my smells.  I was finally home with ALL my boys and if felt good. So good. Bman did such a phenomenal job. He was gentle, he gave baby Ben his blanky. Gave him kisses. All was great....uuuunnnntil two weeks later when the sleep deprivation kicks in, your 2 yrs old wants pancakes for breakfast, but not any old pancakes, chocolate chip pancakes. The clothes get left in the washer all day and over night so now the entire laundry room smells like a locker room. Oh! And the dishes are overflowing. Ooohh the joys! No, but really, I'm so proud of both my boys, no matter how hard the struggle, no matter how high the jump, we'll make it, and we'll make it together. 

The Year After - The Stare

Hello again, I hope you all enjoyed my first entry. Its kinda weird announcing to the world our family struggles, but after I hit that send button, I felt free, released from this cage I've felt trapped in for so long. I've never been one to lock myself up and hide; from anything.

After I promised myself I'd do anything and everything in my power to make Bman's world easier and to help him in any way I could, I started making a bunch of my own matching games,(laminated with clear packing tape)  sensory boxes, and obstacle courses...all of which he loved, but only for awhile. He soon grew bored of all these things. They took FOREVER to make, so I had to think of an alternative.

I decided now that he was a bit older, we could do more physical stuff, thanks to all 4 grandparents, it was possible to put a beautiful cedar swing set in the backyard. He could climb, he could swing, he could flap down the slide as many times as he wanted.  It was and is AWESOME! !

We also went to the mall often, as I learned they had a children's play area.  At first Bman hated it. It was noisy, there was fast movements, kids tripping over each other to reach the top of the stairs first. All of these things scared him. So for the first month or so we'd only stay for 10 minutes. After that he'd get too overwhelmed.  Every month or two we'd increase the time; and before we knew it, our lil man had grown up. Dad and I started noticing he stopped covering his ears, he started to be more independent.  He would scoot by other kids to get where he needed to go, when before, he'd b-line it straight back to us so quick you'd think he was being attacked. He was learning, learning to cope with the world around him. Learning that not everything is as it seems, its not all scary. I was so proud.

There's one thing that really ruffles my mamabear feathers though, THE STARE!! One day at the mall, Bman was happily flapping (stimming) around,  smiling and singing to his own lil beat. My eyes scan the other parents sitting in the area, (ya know, potential mom friends) I see another mom in the corner, her eyes following Bman....the look on her face was repulsive. (Another moment, as hard as I try, I'll never forget.)  She looked at my beautiful, handsome, spunky, and amazingly intelligent 2 yr old like she was disgusted, like he was diseased, toxic. Her eyebrows scrunched downwards,  her lips were snarly crooked. Man, that was definitely the first time ever I felt overwhelmingly angry. All I could do, was stare back at her in disbelief. 

Speechless, it breaks my heart that with no back story, no information at all about this lil boy, that this MOM could be so cruel. He doesn't know why shes staring at him like that? How do I know that he doesn't feel hurt? How do I protect him in such vulnerable situation? The kids didn't care, so why did she?  As moms, parents, adults; its our job to teach young kids, our kids RESPECT.  Just because you don't understand why someone may be acting a certain way, or why they may speak a bit different, doesn't give anyone the right to be disrespectful. Just ask, I'd much rather attempt to explain autism and all it comes with, then try to explain why I'm in jail!!

As I'm still breathing fire, holding back the million and one things I'd like to say to this lady, I yell for Bman...he runs his cute lil run to dad and I. We get our shoes on, and pack up our things. I scooped up my perfect lil man and while excessively hugging and kissing him on our way out, I stared. I made sure she knew, I knew. 

                                                     

Intro- The First Year

Hello all, my name is Amanda (Mama O) and I'm new to blogging, but I thought I'd give it a try.  I'm a stay at home mom to two wonderful, spunky lil boys! Benji is my youngest rugrat at 13 months and the other, my oldest is 31/2.  Bman (3yr old) also has autism and a few other diagnoses.  My fiance Mike is my rock and my saving grace. (I swear if it wasn't for him and my lovely mother, idk where I'd be) lol.  I'm starting this blog as a personal outlet and to share my experiences and stories as an autism mom. 

Im hoping by sharing my experiences and stories that for one, I can possibly help other moms (or dads) dealing with the same or similar struggles. Its not easy, and I find as time goes on it only gets harder. Lets start from the beginning. When Bman was born (2013) it was of course the most magical moment of my life. Tears of joy and fear ran down my face as the realization set in that my life as I knew it was over, and every moment I lived from here on out was for someone else. Mind you, I had no issues with this life change, ever since I was young I knew I was going to be a mom, and a badass one at that. But no one warned me about all the changes; mentally, emotionally, physically. Man was I in for a treat. lol

As time went on, and me and my happy baby continued to build our awesome bond, going to story-time at the library, park dates, mommy meetups,  I started noticing something was different. He didn't meet his milestones when all the other kids did. He had awkward behaviors that I hadn't seen the other children do, he wasn't interested in speaking. He was around 8-9 months when I first voiced my concern. I had no idea what it was, if anything really, my heart just knew. Most people (docs included) tried to veer away from any one particular answer and threw words like "every child is different" and "only time will tell" (doesn't it always) lol 

I waited until his 1 yr well check to re-voice my concerns only to get the "he's too young, you're just gonna have to wait it out" lecture.  BS... don't tell me that I have no options, don't tell me that I'm wrong for having such concerns and that I'm "just being paranoid"....man, that doc lit the fire under my ass so quick I'm sure he was happy to see me leave. 

Skip ahead several months, and here we are, 19 months, got his first speech and occupational evaluations done...(no help from the doc) and of course we all know what happens after...THERAPIES....!!! He had a rough few months getting used to going and taking direction from someone other then me (or close fam) but then he was a pro....he progressed so much and I was so proud. During this time, we were referred to a developmental pediatrician, after that long process is when we got the official autism diagnoses. I felt relieved that I wasn't crazy, there WAS something different and now we have access to the tools that can help him.

But soon after feeling validated, it felt like someone had ripped my heart out. I felt sorry for myself, guilty....what did I do to make him this way, my perfect baby is no longer perfect.  It took a good long while for me to accept the fact that he was different. He's still my perfect baby, nothing has changed about HIM, HE has always been the same. I allowed the label that got stamped on him make me doubt if I could do it. I will never forget the moment I heard Katy Perrys "Unconditional" song. I'm sure its about a boyfriend or something silly, but man oh man, right then and there, at the red light I started bawling, looked back at Bman who was happily flapping his hands to the beat of the music, I knew.... I knew I could do it.  And that I would try and put in as much effort as needed to give this kid a chance. To make sure he felt loved and accepted EVERYDAY!