Today is a day where I ask my friends to take a pledge every year. To spread the word to end the (R) word. And while it's a absolutely hands down worthy cause, the truth is my mind is focused slightly above my little precious Eddie. Today I am also taking another type of pledge, one to myself and to my oldest son. Instead of focusing on Eddie today, today the focus is on his big brother, my sweet, sensitive, loving, wise, intuitive and amazing oldest child. I often say to people, jokingly, that Dominick is my true "special needs" son. And people usually giggle as I try my hardest to describe in few, short words just how trying it is to be this boy's mama. Dominick from before he was a year old has been able to perform tasks way beyond his years, well year in this case. He has always had an absolutely amazing and awe inspiring capability to learn new things. He knew all his letters, their sounds, how to identify them in sentences, all before turning 1. He always just got stuff. He made my job as his first teacher a breeze and an absolute privilege. His intelligence is a wonderment to me to this day. That aside, there is so much more to Dominick's brain function than just his intellect. I learned when he just turned 3 that he was so smart that his brain was working way too fast for his speech. This caused serious and almost devastating meltdowns and tantrums. He was almost 3, barely able to form a sentence and repeating the few words he did know over and over and over and over and OVER. For sometimes 40 minutes at a time. I tried everything. Distracting was just not an option. Bribery was pointless. Hugging and affection did nothing. I was lost. On top of the meltdowns there was, and still is, the defiance. If I say go, he will stop. If I say yes, then no it is. This is down to the minute details in our every day life. "Dominick would you like a waffle" Even tho this is his favorite food, he will say no just to oppose me. Every day, all day. I was drained. I was beat. I was defeated. I was alone. At the time all of these behavior started I had just had Eddie, and for those who don't know, that is his little brother who was born with Down syndrom. My husband worked the graveyard shift and the days he was off, he was a zombie. The age 2-3 for Dominick was one of the absoulte hardest years of my life. The tantrums, the defiance, the meltdowns were NOT typical 2 year old behaviors, I knew this. The meltdowns that include constant looping of one phrase ("I open the door, I open the door, I open the door" when I would open the fridge or the front door or the car door, or tried to do anything really) is what prompted me to get him tested, fearing he had some kind of OCD or Oppositional Defiance. I took him to be tested and was floored by how much he knew, he was given a very abstact matching test and got every single one correct. I had to ask the teacher if he was correct every time because I had no idea what they were asking. He did, instantly placing the little cards with the correct abstract image. After two series of test, I was brought into the psychologists office, heart in throat and sweat in hands.
She said "Well, Mrs. Petraglia, it turns out all of Dominick's behavior issues stem from him being extremely intelligent and unable to express himself. He also needs to control things, a common bi product of highly intelligent children. I suggest you put him in music lessons, guitar, violin, piano..anything, and I believe he will flourish and this will give him the outlet he needs and something that is his, that he can control."
Sounded like a plan! Wow, ok, so he's super smart!? Like, officially!? This is amazing! My frustrations were quickly masked by pride and joy in my smart little boy. Music lessons, STAT,,,,,Except he was 3 and nobody would give him private lessons. Group music therapy type lessons offered no help, while they were fun in their own right, they were not tapping into that area of his brain that needed it. So, I put it aside. I had an answer, and that was good enough for me.
Until it wasn't anymore. His behaviors were not subsiding and new behaviors were adding themselves to the itinerary. We learned when he started preschool, not long after his testing, that he does NOT do well with changing of routines. That paired with normal separation anxiety being away from me for the first time ever...well, the first few days were so horrible, I still cry thinking about it. Once Dominick started preschool I learned two things. First, he is not the typical. happy go lucky, run and play 3 year old. He will study his surroundings and observe quietly and have no desire to "go play" with other kids. This has followed him to every new teacher, classroom and school over the past 3 years. Every time we change his setting, teacher, classroom or school it causes overwhelming emotion and anxiety for him. How these present themselves is through behavior. And even tho my brain knows the triggers, it's never an easy process. He will become 1,000 X's more defiant and ornery. I will last a good few days knowing in my heart why he is acting out. Yet, after a few days I just lose it. I lose it. Plain and simple. There is only so many times I can get opposition from him before I just want to scream.
Another way his intelligence and heightened awareness of all things around and within him presents is through his sleep. We have had sleep "issues' since he turned 2. He stopped napping completely at this age. The older he got the worse the issues became. The issues morphed so many times until finally settling on one common theme. Fear. Overwhelming fear. Fear of everything and nothing all at the same time. We have now finally found a routine that helps with his fears at night, but over the past year or more I have noticed that this fear is now effecting his day job! He is afraid of any empty room, day or night, sun up or sun down. He cannot be alone for even one moment, anywhere. When he was smaller and still to this day, he cannot play a game or do any activity alone. If he is doing a solo activity, he is giving me a constant, and I mean CONSTANT commentary. Every thought expressed, every decision shared.
I know all these things are part of what make Dominick so special and unique. I know that. but, as a mother of two kids. Both with special needs, I am so tired. I feel smothered and overwhelmed. I feel like I have lost every single part of me. Admitting that those things make me sad is a very humiliating feeling. I have become a fly off the handle mom, with yelling the go to way to express my anger and stress. I don't recognize myself anymore. Not only as a Mother, but as a person. Who am I? I have never lost my patience the way I do now, in my life. And patience is one of the things that made me me. I never lost my temper or yelled, yet these days it's what I do best.
Every mom wants to give up and WILL give up everything for her children. The reality of that, however can make you feel like you're sinking in an ocean and nobody is there to save you. I live in constant struggle to be the mother I have always dreamed of being. Smart, funny, loving and above all - patient. Yet, lately, patience has been outside our front door just waiting to be let in. Only I can open that door. She will be a welcomed guest. Yet, just like with friends, I don't always invite people over because the laundry is piled over or the dishes are smelly in the sink, or the toys are everywhere and I haven't mopped for weeks. I think it is time to treat patience as I would my best friend. The friend who doesn't care about your dirty laundry and disgusting house, the friend that will be there for you through thick and thin. That is patience. I am ready today to unlock that door, to take that pledge and to show all of the ugliness that it takes to be a Mother, to let that welcomed friend it and allow her to put her arms around me and forgive me for letting her wait outside in the cold for so long.
Wednesday, March 2, 2016
Today I Pledge....Patience.
Thursday, October 22, 2015
Halloween Poop!
Totally random post today. I just wanted to create this blog post so I can create a Pinterest Pin to my Hallooween Poop labels I made last night. A few kinder moms and I are throwing a Halloween party and I saw a really cute idea for Pumpkin Poop (cheeseballs), then came across Ghost and Bat poop. Well, for the pumpkin poop I found a really cute little poem, but for the ghost and bat poop--nothing. So, I wrote them myself, and I thought there may be others out there who would like to borrow my creations....Here are the labels I created:
Friday, February 13, 2015
Enough is Enough
It's been a rough few months for me. One of the things I've learned about myself in my 39 years is that I have a REALLY hard time letting go. People who get into my heart, that I love unconditionally, don't get out easily. Not on my end anyway. I've experienced this kind of emotional anguish over men (boys, really) in the past, but only one other time has my heart been so broken. This time though, it wasn't a boyfriend that I broke up with, it was a best friend. Luckily for me, I'm in an extremely stable place in my life. I have a husband that has proven in this time that HE is my one and only true best friend. Through this difficult time it seems our relationship has grown 100 fold. His support, his shoulder (that I've cried on more times than I care to admit) his caring for me and belief in me have truly gotten me through the past 4 months. Not only that but, i have my kids. Let's face it, having kids can distract you from anything. They are all consuming. I thank God for them!
Over the past 4 months I've gone through so many emotions: hurt, loss, betrayal, denial, anger and sadness. I've felt them all before. I'm no stranger.
What's different now is my body. I've spent the last 2 years building my body and soul through health and fitness. I've taken great pride in myself and my accomplishments. Losing 20 lbs, exercising for the first time in my life, empowering myself and gaining confidence like I've never known. And just like that <poof> it's all gone. Ok, not all. I've managed to start a new program, I started off great, but I lost it after 4 weeks. I tried and tried and I'm still trying to get back on track. I just can't seem to find my groove again.
Then this past week I had a realization. When I started this fitness journey I was in a fairly good place in my life. A stable place. Sure, I had some emotions still swirling around with Eddie's diagnosis, but setting an example and seeing how it inspired him fueled my fire. It launched me to success. It was easy for me to quickly and drastically change my diet, begin a program that I loved and watch the weight fall off. I was happy then. I had it all. I had support coming out my ears. This is the first time in 2 years since starting my journey that I've been hit with a major set back. A heartache that I don't even know how to categorize. I never classified myself as an emotional eater. Not until now. Now, all bets are off. I'm learning that I AM an emotional eater. I'm an emotional face stuffer. I'm an emotional coach potato. I'm in an emotional hurricane and food is in the eye of the storm. I feel completely overpowered by my urges then when I'm eating crap I brush it off. Who cares. I have a husband who loves me. I'm a great mom. I'm a good person.
But I care. I care because now I know how it feels to be healthy. And I don't feel healthy now. I feel lazy. I feel bloated. I feel lethargic. I feel heavy in the belly and bum, as well as the heart. I've gotten sick for 2 weeks straight, followed immediately by a bladder infection. Enough is enough.
I know, logically, that once I start drinking more water and eating clean I will start to feel better emotionally, I'll have more energy for my workouts, I'll feel lighter. I will be able to heal quicker, both physically and emotionally. I know this. But somehow I'm paralyzed.
I don't know if this was the "reason" behind the heartache I had to go through to get here. If it's to make me a better coach, one who understands on a much more emotional level than I ever could have before. But it sure feels that eat. Relating to people, especially people I coach, is extremely important to me. I know that just having that first hand experience will help me help someone else. Even if it's just one other person. That's why I'm writing this tonight. To say it again, enough is enough. I'm taking a stand. I'm starting a new clean eating plan. And I won't let any thing, any one or any situation stop me. Maybe, like most of the really hard lessons in my life, I'll have to do it alone. That's ok. I know I can. I've been through worse and I've survived.
If you can relate to any of this. Please don't hesitate to contact me. I'd like to think of myself a pretty good listener. Just reach out.
Thanks for listening and thank you for your continued support. XO
Sunday, February 2, 2014
Why I Became A Beachbody Coach
As most of you are aware, I've been on a journey to get fit. Even just a year ago I never would have believed those words were to come out of my mouth. It happened out of nowhere. One day I decided to finally join a friend at a local "boot camp", after quite a few months of saying "no, thanks" about a hundred times. I don't know what made this day any different, other than my slight curiosity. Boot camp sounded scary, but I wanted to give it a try. I'll be honest. The first day I nearly threw up - 3 times. I would have quit if it weren't for my friends pushing me and encouraging me. I was 37 years old and had literally NEVER exercised a day in my life. I thought I was going to die by the end of the hour. But something else happened, I felt proud of myself. I felt motivated and challenged. Why was I telling myself I couldn't do it for so many years? That was IT I was doing this. I was gonna make a go of it and see if I could actually get results. I stuck with the boot camp, tweaked my diet a bit & cut out soda and drank only water - and I lost I think 2 pounds the first WEEK! Yeah I was in this now. Except...boot camp wasn't easy for me to do with my husbands work schedule and two littles. At the same time that I started this journey, my husband started doing the Insanity workouts at work with his co workers. He would come home and tell me how it was kicking his ass. I'd say "I want to try" (still can't believe those words came out of my mouth). I was feeling strong by this time and I wanted to take him and Insanity ON! He brought home the DVD for me and that is what REALLY started my Beachbody journey. A few things happened after my first day of Insanity 1) I almost died. Like I thought I was going to literally die after the first fit test ha 2) I didn't die, but I gained an immense sense of strength and empowerment. 3) I made a commitment. I promised myself I would complete the program. And I did! Sure, I hit a few bumps in the road, missing a workout here and there, but 95% of the time I pushed play. My husband never completed it, he never even made it to the second phase! Ha! This just added fuel to the fire. I WILL DO THIS! The day I finally completed Insanity was honestly one of the proudest days of my life. By this point I had heard about Shaun T's (who my son calls "mamas boyfriend") new workout Focus T 25. My obsession with fitness has now been established and my love for Shaun T carried me to the next phase. I started T25. I LOVED IT. I was used to 60+ minutes every day, but this one was only 25! Done. I continued to stay committed to myself and my health. I was officially addicted to the results I was seeing. I am now 38 years old and in the best shape of my life. I look better than I ever have. Yes, EVER. More importantly, I feel better I feel strong, something I never have felt. I've lost 16 lbs, so far. But I've gained confidence and a sense of self I've never had. Now it's just part of my life. My kids know "mommy has to exercise, let's move the furniture" I'm setting an example. And something else happened, literally just this week. And this is where it gets emotional for me. For those of you who don't know, my youngest son has Down syndrome. With that comes low muscle tone and some delays in gross motor skills. He is 27 months old and cannot yet crawl, pull to stand, cruise or walk. He gets physical therapy once a week, along with 3 other therapies to help his development. I decides this week to let Eddie hang out while I workout, instead of waiting for his nap. And something amazing happened. Watching me is motivating HIM. He gets up on all fours, gets in plank position and tried his hardest to stand and crawl. I am crying as I write this. To think I could be that kind of motivation humbles me and also inspires me to keep going. If I can do it, of Eddie can do it, please believe that you can do it too.
Monday, January 27, 2014
I Hate Down Syndrome
Yes. I hate it. I'm sitting here looking up the definition of IEP's. Thinking about having to take little
Eddie in just a couple months to be evaluated by the district for placement in the preschool at three. Picturing him going through this process, physically makes me want to vomit. I had Dominick evaluated last year, so I know the process. That's the problem. I. Know. The. Process. I watched Dominick ace all the "tests". I will have to watch Eddie ... Watch him not even understand the questions. It's just so easy to be home with him, to keep him in my safe bubble. Out in the world, no. I'm not ready for that. I don't know if it's because I know I won't be able to be there at all times to protect him, or if it's because it will bring to the forefront how delayed he is. I'm so torn. Torn between worlds. My comfortable, safe world, where Eddie is just Eddie. And the scary real world where Eddie has Down syndrome. Of course, Eddie always has Down syndrome, but Down syndrome in the real world is way different than Down syndrome in OUR world. Maybe that's just because neither Eddie nor I have been out in that scary real world yet. The world of IEPs and labels. The scary world of SCHOOL. I don't want him to be different. I don't want him to be judged. I don't even want IEPs or evaluations. I want him to be my baby Eddie and stay with me where he will always be safe. With me, he doesn't walk yet and it's ok! With me, he doesn't talk yet, and I don't care! With me, he's just Eddie. Out there. Out there he's a diagnosis. He's a list of things he's unable to do. So. Yes. I hate Down syndrome. But not the Down syndrome that lives in my house. The one that lives in the big scary world, full of labels, judgement and sometimes, ignorance.
I have a few months to mentally prepare for this next step in our journey. But for now. I'm not letting this angel out of my sight!!
Friday, December 13, 2013
Overwhelmed
So, it's been a long while since I've blogged. My life is so busy and crazy sometimes that I forget to pee and remember hours later. Yeah. That actually happened yesterday.
Something about the holidays is getting my emotions all stirred up. I feel like I'm constantly in panic mode lately. I could cry at the drop of a hat. When I get like this, two things happen: I get overwhelmed and become paralyzed and I start to dwell on the negative. Today I am feeling the reality that eddie is now two and still not bearing any weight on his legs. Eddie has to have therapies several times a week, and the scheduling of those therapies alone can send me into a tailspin, leaving me curled in a ball in my bed. With that thought comes immense guilt. The mommy guilt times a million. I just do not do enough for him. I should be on the floor with him, helping him, pushing him. Instead I am stuck in the mindset that he will do it when he's ready. Sure, that's partly true, but the reality is that he needs me. He needs to be constantly challenged and assisted in order to become strong enough to withstand his own weight. There are days, like today, where I feel like an awful mother. I think everyone thinks of me as this perfect mom because I am always posting about his accomplishments. The truth is, I may be a great mom, but I am far from perfect. Maybe I'm being too hard on myself. Maybe I'm not being hard enough. I need to suck up this feeling and kick my ass into gear again. Since our vacation to NY I have been stalled. Not only with Eddie, but my own fitness is being effected as well. I have lost the drive I had just a month ago. I keep saying I will start over in the new year. It's just an excuse to put off my own health and fitness. I just wish I knew what it is going to take to snap me out of this rut. Maybe putting it out into the world will do it. I could go on for days about all the other things taking up space in my mind and heart, but I'll leave it at that for now. Anyway. Say a little prayer for me, please.
Wednesday, April 24, 2013
Calling all friends and family!
I just want to quickly throw this out there, this may get long. I apologize in advance. Something happened tonight that got me thinking. I went 35+ years never knowing anyone with Down syndrome. I've heard of it, seen people with it, but it never had any connection to make with it emotionally. Obviously, that's changed, duh. And because of Eddie, those of you, my friends and family now DO HAVE that connection. You have a face to connect to, a smile that comes to mind, a tiny human being you can now relate to. An image of Eddie, so beautiful, pure, innocent and sweet to conjure up when someone mentions ds, or worse, tries to blindly make fun of. I have a very personal favor to ask of you all. Can you please help me advocate and stand up for kids like Eddie with Down syndrome or any special needs? I realize how it could easily roll off the backs of someone not affected or connected to someone like Eddie. But, that's not us anymore. Eddie has changed everything for me. I'm no longer just a mommy. I'm a "special needs" mommy. I'm my sons first advocate, but hopefully not his only one. Eddie has given me more gifts and blessings than I dare to count. It makes me so happy that he can touch your life, in even the smallest way. So please help me spread the love!! Eddie and I thank you!!
