Born This Way......Sigh
I'm the very proud mom of an almost 13 year old son with Down syndrome. I wasn't overjoyed to learn of his diagnosis hours after his birth....like seriously so not overcome with joy. I walked around with a dark cloud over my head for 4 years. It was bad.
I've come such a long way since then. I wouldn't want my kiddo any other way. I feel like I'm such a different woman and mom because of him. Patience has never been my strong suit. Thanks to my kiddo, I have to say that I actually have patience. It comes and goes but I'm way more patient now than I was when I had my first kid.
I've learned to not project to much into the future, to live in the now and to appreciate what my son is doing today, not focusing on what he struggles with. For parents of children with any special need, this is a tough one. I'm no different. My son is extremely speech delayed. Children with Down syndrome have very low muscle tone which affects their development. For instance, my son didn't start walking until his was 3 years old. His trunk (core) was so weak that he couldn't hold himself up. The same is true with the muscles in his mouth. Certain words and phrases are intelligible, but having a full blown conversation is heart breaking because I have no idea what he's saying, and he has a lot to say. On top of the low muscle tone, many people with Down syndrome also have Apraxia of speech. My kiddo has a pretty severe case of this. It's when the muscles in the mouth and the brain don't work together to get the sounds out. My kiddo has the cards stacked against him in the speech department.
While I've accepted my son's diagnosis and who he is as a person, I still have days where I get bummed out because I can't understand him and he's trying so hard to be understood. Or when we have to battle the school district to ensure that his rights are being met or when I see him being marginalized by typical peers or family members. At almost 13, we still have to help him with self-care tasks, get out of bed in the mornings and get dressed for school. It gets old and depressing at times.
Which brings me to this new reality TV show called Born This Way on A&E. The show focuses on young adults with Down syndrome and their families. The cameras follow these adults as they navigate their every day lives. These adults have the same desires as their typical peers....to have a boyfriend or girlfriend, to live on their own, to be married, to work.....The parents have to learn to let go and to help them live out their dreams to the best of their abilities. That's my take on the show. I haven't watched it, not even a minute of it.
I've been approached by 3 different people asking me if I've watched the show. 2 are good friends, one of which has a daughter with special needs. The other is a fellow mom walking the same journey as me. Normally, I pounce on things like this. I like to see people with Down syndrome being successful and as independent as possible. I like to read success stories, watch special interest stories on the news or online. Having said that, I can't bring myself to watch this show......
Why? Because it's going to hurt. Watching these young adults who are pretty independent and verbal is reminder of everything my son is not. We do so much for our kiddo. Partly because he's so darn slow and we're always rushing that it's easier to do things for him. I know terrible excuse but it's true. Will the speech come? I'm hopeful that it will. It's just going to continue to take his effort, ours and time, a lot of it. Seeing these young adults is going to project me into imagining a future that may not be his. Going there hurts a lot. I don't want to go there right now. I feel like I'm the minority on this issue. I've seen people get upset by fellow parents of children with Ds who like me have chosen not to watch. They can't imagine why someone like myself doesn't support the show. I do support the show. I think for those new parents who have just received a diagnosis or have little ones this show is just what they need. Had this show been on the air 13 years ago, heck yeah I would've been all over it. I would have hosted viewing parties for sure. I also feel like this show is great for all people to see that adults with Down syndrome have the same dreams and hopes as their typical peers. For families who have a relative with Down syndrome to try to understand what the parents of these young adults go through as they transition to this new phase of life. I know where my son is now and it doesn't look like he'll be able to do anything that these young adults are doing. I sound like such Negative Nelly. I know I totally do. However I will not stop pushing him to do better, to take him to speech and to practice at home with him. I see how much he's grown and how hard he tries at everything he does. I see him comfortable in his own skin at church or at Boy Scouts. He thrives at sleep away camp without me or his dad or siblings. Will he get to where I think he needs to be to be able to be cast on a show like Born This Way? Probably yes. I just see what's in front of me today and there's still a lot of work to do.
Tuesday, January 19, 2016
Tuesday, January 5, 2016
New Year's Revolution
Happy New Year!
I had every intention of at least posting here a few times during the holidays but that clearly didn't happen....I keep making excuses for myself like, we only have one computer, the kids are home and I can't write when they are around, I'm sick and I'm really tired.....all of these things are and were true but they are things that are facts of my life (well not the being sick part).
Here's the other thing, I was really grumpy after Christmas....like not happy. I threw myself a pity party and I didn't want to leave. Actually I still feel like being at it, but honestly it's getting old and its time for me to act on what was bringing me down.
Every year our parish, St. Joan of Arc hosts a program called GIFT....It's three weeks of workshops intended to nourish our faith in the new year. Most of the workshops are intended for adults so that they can grow in their faith, but a few of them are intended for the high school and middle school kids and their parents. Last night, I was supposed to go to a workshop entitled
Adolescent Development: Keys to Improving Communication With Teens....I have 2.75 teens currently plus a 7 year old who acts like a 16 year old...of course this was perfect for me....It got canceled due to low registration, UGH! So I thought, oh good, I can go to the workshop entitled Living with Emotional Balance: Emotion Regulation As A Hallmark of Mental Health....after my thoughts around New Years Eve, I so needed this workshop. But, and there's always a BUT my Freshman's water polo practice was canceled so he was available to attend the High school group's LIGHT night entitled A New Year's Revolution....parents were encouraged to attend. So, I went with him, and honestly I'm so glad I did.
You see, I needed a push to make changes in my life, I need to spark a Revolution for me. The week leading up to New Year's Eve, I was in a funk. You know what really pushes me further into a funk? Facebook. Scrolling through Facebook and seeing people's post on their awesome vacations and social lives got me thinking about how I lack those things. I have friends, but I honestly don't have a group of girlfriends that gets together often anymore. I used to have that, but life happens and people move away and with 4 kids, it's hard to get out in the evenings. We're not good money people, so we don't have extra money to take off for a weekend in the mountains, we don't own a vacation home anywhere nor do our parents so we don't have a place to go and again, we don't have a group of friends that we can go do that with. So, all these thoughts were running through my head by the time New Year's Eve rolled along and I wasn't happy....I was annoyed with our lives or lack of one. I was annoyed that my husband spent his day off volunteering with the Boy Scouts instead of with us where we could have gone out to the City or to Berkeley like we've done in the past. I was annoyed that he didn't plan an awesome meal since we were staying home. I was grumpy!
I've been feeling like I'm in a transition phase of my life for about 6 months now. Last year, I began a journey of health and fitness. I committed to working out 6-7 days of the week, drinking a meal replacement shake called Shakeology daily and eating fairly clean (big emphasis on fairly). I've been consistent with that for a year and I feel great. It took having to put myself first and to be OK with that. I guess now that I have that under my belt, I feel like I need to work on some other things like finding a tribe of people that will provide me with the social input that I need and crave. I also need to help our family get our finances under control so that we can take off on weekends and not have it be a hardship. This is going to be hard for me...and us because in 20 years of marriage we've never functioned with a working budget.....
So, yes instead of Resolutions this year, I need to spark a Revolution in my life for continued growth in all areas of my life. You see, I'm the only one that was annoyed on New Year's Eve. Everyone else in the house was perfectly fine with being home, eating dinner together and hanging out watching ABC. And honestly after the busy weeks leading up to Christmas, I should've been fine too...but I wasn't.
How am I going to do this? Well, first off, I'm going to start by having a better attitude towards everything I do have. I have a loving husband, who works hard to provide for us. I have 4 healthy kids who are good to each other and actually like each other. I live in a community of kind people who are happy to help when I need a hand. We belong to a wonderful parish that is dynamic with their offerings for families. I'm going to work hard to change my spending habits...this is going to be hard for me. I've been researching information on how to create budgets and how to implement them. It's going to take sacrifice, commitment and consistency but I know that I can do it. I'm also going to reach out to people instead of waiting for them to reach out to me. I have a 7 year old daughter who wants to participate in family activities at school and I have had the worst attitude about taking her to things because well, I've been there done all that with my boys. However, it's not good for her or me because we're missing out on building relationships and I'm feeling like I need some new ones in my life.
Sparking a Revolution isn't easy. It takes courage, consistency, sacrifice, discipline. But here's what I got out of last night, I don't have to do it alone. I have people in my corner that are going to be willing to help me along. I just need to show up, be brave, ask for help and do the work. Here's to my Revolution!
I had every intention of at least posting here a few times during the holidays but that clearly didn't happen....I keep making excuses for myself like, we only have one computer, the kids are home and I can't write when they are around, I'm sick and I'm really tired.....all of these things are and were true but they are things that are facts of my life (well not the being sick part).
Here's the other thing, I was really grumpy after Christmas....like not happy. I threw myself a pity party and I didn't want to leave. Actually I still feel like being at it, but honestly it's getting old and its time for me to act on what was bringing me down.
Every year our parish, St. Joan of Arc hosts a program called GIFT....It's three weeks of workshops intended to nourish our faith in the new year. Most of the workshops are intended for adults so that they can grow in their faith, but a few of them are intended for the high school and middle school kids and their parents. Last night, I was supposed to go to a workshop entitled
Adolescent Development: Keys to Improving Communication With Teens....I have 2.75 teens currently plus a 7 year old who acts like a 16 year old...of course this was perfect for me....It got canceled due to low registration, UGH! So I thought, oh good, I can go to the workshop entitled Living with Emotional Balance: Emotion Regulation As A Hallmark of Mental Health....after my thoughts around New Years Eve, I so needed this workshop. But, and there's always a BUT my Freshman's water polo practice was canceled so he was available to attend the High school group's LIGHT night entitled A New Year's Revolution....parents were encouraged to attend. So, I went with him, and honestly I'm so glad I did.
You see, I needed a push to make changes in my life, I need to spark a Revolution for me. The week leading up to New Year's Eve, I was in a funk. You know what really pushes me further into a funk? Facebook. Scrolling through Facebook and seeing people's post on their awesome vacations and social lives got me thinking about how I lack those things. I have friends, but I honestly don't have a group of girlfriends that gets together often anymore. I used to have that, but life happens and people move away and with 4 kids, it's hard to get out in the evenings. We're not good money people, so we don't have extra money to take off for a weekend in the mountains, we don't own a vacation home anywhere nor do our parents so we don't have a place to go and again, we don't have a group of friends that we can go do that with. So, all these thoughts were running through my head by the time New Year's Eve rolled along and I wasn't happy....I was annoyed with our lives or lack of one. I was annoyed that my husband spent his day off volunteering with the Boy Scouts instead of with us where we could have gone out to the City or to Berkeley like we've done in the past. I was annoyed that he didn't plan an awesome meal since we were staying home. I was grumpy!
I've been feeling like I'm in a transition phase of my life for about 6 months now. Last year, I began a journey of health and fitness. I committed to working out 6-7 days of the week, drinking a meal replacement shake called Shakeology daily and eating fairly clean (big emphasis on fairly). I've been consistent with that for a year and I feel great. It took having to put myself first and to be OK with that. I guess now that I have that under my belt, I feel like I need to work on some other things like finding a tribe of people that will provide me with the social input that I need and crave. I also need to help our family get our finances under control so that we can take off on weekends and not have it be a hardship. This is going to be hard for me...and us because in 20 years of marriage we've never functioned with a working budget.....
So, yes instead of Resolutions this year, I need to spark a Revolution in my life for continued growth in all areas of my life. You see, I'm the only one that was annoyed on New Year's Eve. Everyone else in the house was perfectly fine with being home, eating dinner together and hanging out watching ABC. And honestly after the busy weeks leading up to Christmas, I should've been fine too...but I wasn't.
How am I going to do this? Well, first off, I'm going to start by having a better attitude towards everything I do have. I have a loving husband, who works hard to provide for us. I have 4 healthy kids who are good to each other and actually like each other. I live in a community of kind people who are happy to help when I need a hand. We belong to a wonderful parish that is dynamic with their offerings for families. I'm going to work hard to change my spending habits...this is going to be hard for me. I've been researching information on how to create budgets and how to implement them. It's going to take sacrifice, commitment and consistency but I know that I can do it. I'm also going to reach out to people instead of waiting for them to reach out to me. I have a 7 year old daughter who wants to participate in family activities at school and I have had the worst attitude about taking her to things because well, I've been there done all that with my boys. However, it's not good for her or me because we're missing out on building relationships and I'm feeling like I need some new ones in my life.
Sparking a Revolution isn't easy. It takes courage, consistency, sacrifice, discipline. But here's what I got out of last night, I don't have to do it alone. I have people in my corner that are going to be willing to help me along. I just need to show up, be brave, ask for help and do the work. Here's to my Revolution!
Friday, December 11, 2015
I had ventured into the world of blogging years ago....OK, it was more like dipping my big toe into it. I have felt the need to write and share my thoughts in the hope that someone will identify with the craziness that is my life. Lately that feeling has been growing stronger and stronger, so here I am. I'm back, I'm going to make a go of this again. I feel like it's what I'm supposed to be doing (along with laundry, shopping, cleaning,volunteering etc.).
For the past year, I ventured into getting healthy and fit. I found Beachbody and fell in love with at home workouts along with Shakeology. It's been a year since I have been working out at home, I feel as if I have that part down. I'm happier, healthier and stronger than I have been in a loooong time. I also started paying it forward by Coaching women who also want to start their own health and fitness journey. That has been fun, motivating and inspiring.
Yet, I have more to figure out. How can I become better at my role as a wife, mom, daughter, sister, friend, Coach? I feel like I'm coming to a crossroads and I'm on the verge of taking a leap. It's not yet clear to me as where I'm leaping but I need to leap somewhere. So, this is my first step towards that leap....want to leap with me? Want to follow me along? I'm not sure where this is going to take me but I can't wait to see where I end up.
For the past year, I ventured into getting healthy and fit. I found Beachbody and fell in love with at home workouts along with Shakeology. It's been a year since I have been working out at home, I feel as if I have that part down. I'm happier, healthier and stronger than I have been in a loooong time. I also started paying it forward by Coaching women who also want to start their own health and fitness journey. That has been fun, motivating and inspiring.
Yet, I have more to figure out. How can I become better at my role as a wife, mom, daughter, sister, friend, Coach? I feel like I'm coming to a crossroads and I'm on the verge of taking a leap. It's not yet clear to me as where I'm leaping but I need to leap somewhere. So, this is my first step towards that leap....want to leap with me? Want to follow me along? I'm not sure where this is going to take me but I can't wait to see where I end up.
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