Bridget works very hard to fit into the traditional world. She spends unlimited time working on speech and articulation. Bridget has worked to overcome her fear of the beach and grass. While she still does not like snow, by the end of last year’s never ending snow season Bridget could go outside. She even touched snow in a bucket.
Part of Bridget’s program at school involves monthly workshops. An afternoon every month where all of her educational support personnel, the head of her SPED program, her preschool teacher, speech therapist and occupational therapist meet and go over every one of Bridget’s programs. Parents are encouraged to attend so we can follow through with the therapies at home. It also is a time for them to learn what behavior we are seeing at home and vice versa. Continue reading →
We have all had the “worst day” of our lives. Bridget, in all honesty, has given me most of mine. The time in the NICU, having to physically hold her down for testing and the list goes on. For every “worst day” she has given me countless best days.
That is not always the case.
Today two friends of mine is going through another worst day of their life. Three years ago these happy parents lost their first born, handsome, cute, full of laughter, son to SIDS. Although he was just five months old, Colby gave his parents a lifetime of happy memories. Continue reading →
Today’s Challenge is one of my own. I have to admit I love the Christmas season. Not the season that starts the day before Halloween, but the true Christmas season that begins at noon on Thanksgiving day when Santa appears in the Macy’s Day Parade until the evening of Christmas Day when we sit around with our families and just connect.
I am so excited that Coach Eli is willing to share his Challenge today. I admire Eli so much. First because he coaches girl soccer. I would rather have a root canal. He is the dad to three incredible daughters. He is the dad you want your kid to have. One that balances being a dad with being a coach with being the soft place for his girls to land. Okay enough gushing.
I have been blogging for about four years now. In my first year my friend Michelle at Big Blueberry Eyes began hosting the 31 for 21 challenge. Although Boo doesn’t have Down Syndrome she has a lot of friends that do. I have participated for the past three years and will do so again this year. And this year I am starting on time, so bonus points! October is Down Syndrome Awareness Month. Boo’s favorite friend at school, Jillian, has Down Syndrome. Just like Boo, Jillian learned sign-language first. Did you know that most therapies used in treatment for a person with autism or developmental delay were first created to be used for children with Down Syndrome? Sadly more fiction is out there about Down Syndrome than facts. Last summer a man (for lack of a better word) told a woman that it is immoral to have a child with Down Syndrome. He is wrong, so wrong. I am not promoting pro-life or pro-choice, it is your decision. However I urge, no beg you that if you are pregnant and told your baby might have Down Syndrome to find out the facts, find the support and find information before making a choice you cannot take back. Here is what Down Syndrome is not:
Down Syndrome is not contagious
Although all children with Down Syndrome experience some cognitive delay, having Down Syndrome does not mean the child cannot learn
Down Syndrome is not a rare disorder. In fact 1 in about every 700 children are born with Down Syndrome
People with Down Syndrome are not always happy. Just like all children they have their moments
Here is what Down Syndrome is:
People with Down Syndrome have jobs and participate in the Community
People with Down Syndrome have the capacity to love, to learn and to affect change
People with Down Syndrome life expectancy has grown to be that of most peers.
People with Down Syndrome have friends, know love and just like their peers have tempers
According to NDSS, there are more than 400,000 persons with Down Syndrome living in the US. Chances are if you do not know someone today you will tomorrow.
Down Syndrome does not discriminate on race, age or income level
Having Down Syndrome is a life sentence, but it can be a beautiful life.
The purpose of the 31 for 21 challenge is to post every day in October. Each post does not have to be Down Syndrome related. I did focus on that today to kick off the month. Please visit Michelle’s post to learn more about participating. I hope my fellow bloggers join Michelle’s Challenge. Because awareness promotes acceptance.
I would like you to introduce you to my friend Julie. Other than Julie being addicted to scrap-booking and crafts I never notice anything different about her. Julie has the best personality.One of those people you think must be faking it because she is always happy. She has a gorgeous smile, a quick laugh and an awesome sense of humor. On top of it all she is beautiful. The kind of beauty that radiates from the inside out. This is why I was beyond surprised at her challenge.
My challenge: Self Esteem
I was born with Dwayne’s Syndrome. Dwayne’s Syndrome is a dead nerve in my right eye which has paralyzed one of the muscles responsible for movement. I have perfect 20/20 vision in both eyes, but I don’t have binocular vision as my right eye has a 5 degree from center inward position.
As a child, I used to be called the cross eye trash can. Kids wouldn’t let me sit with them on the bus. My self-confidence was attacked. But I learned to forgive those kids for what they did to me because I know they were hurting somehow.
I continue to hear the voices of that childhood bully. I don’t see the beauty that others see. My hubby, kiddos and friends tell me all the time how beautiful I am. WHY can’t I see me through his and my kids eyes? !!! It makes me so sad….:(
With that being said don’t feel sorry for me. I don’t. I have a wonderful husband, family and friends. The bullying of the past makes me appreciate their love for me. I do sometimes wish things could have been different, but then again, maybe I wouldn’t have become the kind, accepting and open-minded person I am today.
I pray for a day when children are no longer bullied because they are different.
Go back for a moment and look at Julie’s picture. Is her eye the first thing you see? Me, not so much. I see such a happy, beautiful lady. I can hear her laughter. I know Julie, personally. She is quite incredible. Well, once you get past the craft obsession. By the way, Julie…Abby still wants a craft-date.
To learn more about Julie’s craftiness visit her blog The Cape Cod Scrapper. She will give you great ideas, even if you are as untalented as I am. She is even willing to tutor.
Dwayne’s Syndrome is a rare form of strabismus, or misalignment of the eye. Where most forms of strabismus leave side-to-side eye movements intact, in Duane syndrome the “wiring” of the eye muscles gets jumbled, and movement of eye(s) is limited in certain directions. To learn more about Dwayne’s syndrome please visit The Boston Children’s Hospital information.
While I have so much to be thankful for this week, I am only going to focus on one person who made a difference in Boo’s life.
Each and every person who works with Boo becomes a part of our family. I am not sure if it happens with other parents, I hope so. Because you are all so important to a child’s success. This is a special thank you to Emily (or Emmy as Boo calls you) who had to say goodbye this week. She is leaving us for a great new adventure and we wish her nothing but happiness. Emily you will be missed. You have been an integral part of our “family”. Boo’s gains is due to your being a part of her team. Your patience. Your kindness. Your firmness. And yes, your snuggles. Boo (and we) love you “Emmy”. We will never forget what you have done for us. We consider Boo lucky to be part of a team of teachers and therapists who work together to make her the best. I know your co-therapists will miss you as much as I will. Workshops won’t be the same. Heck, Fridays won’t be the same. You have helped us navigate feeding issues, potty training, stairs and Boo finding her voice. She has flourished under your care. I have seen you correct her with love. I have seen you stop when she wants just one more hug. You held me up after that field trip of tears. I have witnessed your patience (more than I could ever hope to have). I have been lucky to have you collaborate with others who work with Boo. You have allayed my fears and offered guidance. You do every task with attention and caring. Thank you from the bottom of our souls for giving Boo your best.
Today’s challenge is brought to you by the letter Y. Okay not really. This is my challenge.
I suffer from something that is not medical. It is not really treatable. But it is real. I battle self-worth just about every day. This is not a poor me, everyone pat me on the back type of post. Rather it is my challenge: Wondering if I am good enough: Am I a good enough wife? (Depends on the day) Am I a good enough mom? My hair, why just once can I not look put together? I talk too fast, too often and without a filter. (Why, oh, why did I ask my friend who is a lesbian who gave birth to their child?) I forget to breathe and enjoy the moment. I want a cleaner house. One that is put together, that looks like something out of House Beautiful. Well not stuffy. But beach life. I want to run faster, be healthier, be better. (It is not longer about coming in before last place). Why do I have to look like the kid from MASK in pictures? Is my writing good enough? Am I making a difference? I wish I was a good of a friend to others as they are to me. I wish I wore make up. Okay not really, who the hell has time for that? But I have an event next weekend and just know I am going to feel like an ugly duckling in Marcie’s beautiful dress she is loaning me. I wonder why … insert self-effacing /self-defeating comment here. For example, my challenge picture? I agonized over it. Seriously. Here I am asking people to send me their challenges and I cannot figure out how to take a good selfie. So I doctored one. Cause I’m an idiot (that is the dialogue in my head). What is crazy is that I know I am not alone in this challenge. I know so many other people must have to overcome it. Otherwise we wouldn’t leave the bathroom in the morning. About three years ago I made a conscious decision to get out of my own way. To become more vocal, less of a wall flower. I am getting better. I blog. I joined the PTA. I host ladies night. I will walk into a room where I know not a soul and strike up a conversation. If I see someone sitting alone I will try to bring them into a group. I will put myself out there in the hope to gain just a little more self-worth. I try not to create this self dialogue in Abby. That is where my journey started. When Abby began saying she wasn’t good enough. I realized I was modeling language and behavior. And that is why my challenge will not stop me. Impact me, for sure. But stop? Nope my challenge will not define me. I hope.