It’s Throw-back Thursday. This post was originally published on 06-SEP-2012 after a wonderful week of company. But then I became an idiot. Instead of being warrior mom I was one who judged. A person I wasn’t too proud to be.
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!
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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:
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.
Just what we all want for our children. To be seen just like everyone else.
I would like to introduce you to Madrathe mother of a wonderful man who has Down Syndrome. I believe every parent of a child with special needs has the same challenge.
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| Marcus and his mom Mardra |
When Mardra sent me her Challenge I immediately thought of Robert Sayler. Then the horrific parody of the ALS Challenge was done to a young autistic man. Yes, cruelty happens, but when your child is unable to communicate, when their very being is something that can be preyed upon you live with another fear. I send Abby to school every day knowing she could be bullied, targeted and hurt. Yet I know I have provided the tools she needs to alert myself, her father or a trusted adult to keep her as safe as possible. David teachers her self-defense and drills into her the need to be aware of her surroundings. Yet, I know with all the tools we give her a Sandy Hook, a 9/11 or a Boston Marathon could happen. Or worse.
What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com
Today’s Throw-back Thursday post is actually a post from a Finish that Sentence Friday Prompt I answered on April 11, 2013. The prompt was: If I could live anywhere I would live…”
Here:
Time for Finish that Sentence Friday. And today’s snippet is….
“If I could live anywhere I’d live…”
Now I know you are expecting me to say a tropical island with a nice cabana boy who brings me wine at regular intervals…and yes that would be super cool (or warm, I guess). But if I could live anywhere?
I would live in Abby’s brain. Ew, gross you might be thinking? Really who would want to live in squishy brain matter….But I think it would be super cool.
I would be able to talk to fairies, sprites and nymphs (and I would also be able to figure out why they are different). I could look outside and see the fairy houses that were created overnight rather than looking at the leaves that have overtaken my flowerbeds. Instead of seeing a messy bedroom I would see a horse farm in one corner, a Barbie paradise in another and the oh so important stuffed animal corral on the top bunk. The only part of Abby world that Boo cannot be destructo baby in.
Then there is the man cave that Abby has taken over. The playhouse that is where the American Girl Dolls live and have high adventures. Under the pool table? That’s not a pool table MOM (exaggerated sigh) that is where Tinkerbell hid the leprechaun so we can get his gold (thank you Auntie Krafty K for that trap by the way). Oh and that dollhouse? That is where Periwinkle lives in the winter. She travels (who knew) between Allie’s room and the man cave dependent on the season.
I don’t have a summer home, let alone a winter home. Yet Abby’s fairies have vacation homes, condos and leprechauns who give them gold. Maybe I can start charging them rent!
Yes, it would be awesome, wicked awesome, to live in Abby’s brain. If just for a day.
Most importantly, my mind would not be concerned with magnets, every day math or math facts!
If I could go back in time…I wouldn’t. I just wouldn’t. First of all you could not pay me enough to relive my youth. Or my high school years. In fact I think my mom would pay YOU not to make her relive my high school years.
I would be afraid to go back in time. Life is confusing enough. I am by no means where I thought I would be on this day in September. Yet I am so happy to be here. Sure life, well, sometimes sucks. Sometimes I wish my life was easier. With a chauffeur, maid and private island.
But if I could go back to one moment in time, not to live my life over but to improve the lives of moms today then I would want to go back to that moment when some well-meaning person messed up life for the rest of us. For example:
When some idiot mom invented the Elf on the Shelf and then decided to tell other moms. I would a moment to explain to her exactly what torture she would be inflicting on the rest of us.
I would also find the same fool that decided to make St. Paddy’s day not about the Irish drinking holiday but about building a freaking trap for a leprechaun. I would remind them that this is an adult holiday. The children get Halloween, Christmas, Valentines Day and Easter. Leave one for us. We deserve it.
I would go back and find the person who thought it was a good idea to buy Abby a Snoopy Christmas piano that David now plays every freaking time my mom calls.
I would figure out who invented Play-dough, Goop and Silly Putty. I would explain to them in the future my kid is going to smash it into my brand new wood floors. I would encourage them to think of something else to do with their time.
I want to know who thought sparkles were a good thing to put on a little girl’s outfit. Did they not realize in the wash the rest of the clothes would become covered?
I would go to Walt Disney and thank him for this moment:
When I saw joy and interest and a little overcome fear in Boo’s expression as she watched Frozen on Ice. When I saw her sit through the entire show, gasping and cheering and enjoying. When I saw other little girls dancing, singing and showing their joy and it didn’t hurt.
I would go back in time and thank the people who made this day possible: the doctors, the therapists, the family and the friends.
Just don’t ever give the child Play-dough.
Last night when I was up with Bridget, I thought to myself…I love this. I absolutely love just holding her and laying on the couch until she calms down and falls back asleep. I love that she can sense when I lay her back into her bed. I love that she is so small and petite (okay short) that carrying her isn’t a problem.
I know I should not enable her. I know I should just let her cry it out. And most times I do. But last night I just didn’t want to. And of course I feel some guilt. I hate when Abby wakes up in the middle of the night and wants to sleep in our bed. It’s not that I dislike Abby, but the fact that sleeping with Abby is like sleeping with a boxer. She is all knees and elbows.
Bridget though, Bridget hugs you with her entire body. She wants to nestle her head right under your neck. She knows the difference between my standing with her and sitting. Without a word she knows how to tell me what she needs to be comforted.
For almost the first 2 years of Bridget’s life I would put her to bed and she would fall asleep. Then anytime between midnight and 4 am, when I was in the deepest sleep possible, she would awaken. Screaming. All I could do to comfort her was to lay on the couch in a way to make sure she was safe and we would doze. It got to be that I just left the pillows and comforters behind the couch so they would be in easy reach in the morning.
Then shortly after she turned 2 and a half, one night I got tough. She was going to comfort herself back to sleep. It was a month of torture. The “experts” totally lie when they say a child will cry themselves to sleep after 10 minutes. But the month was worth it. Gradually Breidget began to sleep through the night, most of the time. And now when she wakes up she will coo herself (and sometimes cry) back to sleep. I have learned her signals. If she fusses for more than 5 minutes there is no way she is falling back to sleep. She will stress herself so that her reflux acts up. Then she is in pain, something I will not withhold comfort from.
But those nights are becoming fewer and fewer. Thank goodness, Boo is sleeping better. Although I still wake up in the night sure that I have heard something. And on the nights now when I know she cannot comfort herself, I rush into the room and will forgo any thoughts of sleep.
I may never know why Boo wakes up screaming in the night. Sure I can guess. It might be bowel issues, she might be in pain, she might be scared. But sometimes, like last night, I think she just needs her mom’s arms around her.
And I am more than okay with that.
I “met” Allie through the world of the Blog. I am not quite sure how we stumbled on one another but she continues to crack me up with the escapades of her four children, husband and life in general. On top of it all, Allie is an autism activist, an author and a woman with a sense of humor similar to my own.
Her challenge: Organization.
What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com
Today I am very thankful. So thankful I am participating in the Ten Things of Thankful hosted by Lizzi.
1. I am thankful for the friends who got what I was trying to say when I spewed venom earlier this week. That I would not trade Boo for the world but once in a while life becomes too much.
2. For Walt Disney & Company, I understand not one more parent wants to hear Let it Go but to see Boo’s face as she watched the Ice Show? Magic. Pure Magic.
3. For sisterly love.
4. That more people got the humor of Helicopter parent than were offended. Come on people lighten up, life is too short!
5. The I Run 4 group for their dedication and willingness to provide emotional support for families.
6. For M&M’s. Lame, maybe. But they are important to my state of mind. The fact that I can just eat three and provide amusement to others is an added bonus.
7. For older sisters willingly giving up their toys to their younger siblings.
8. For the friend that took Abby for a weekend of one-on-one attention.
9. For this video right here that shows Abby is not the only sibling who loves unconditionally.
10. And lastly, for this moment. This moment right here when Boo was a just a little girl in love with princesses and castles.
The fact that she just tells us to OME ERE and look at the castle and not really play with it doesn’t matter. That she just holds the three punsel (Rapunzel) Barbies stolen from her sister, meaningless. What I see here is a little girl who loves Princesses just like her older sister did. That she made Abby bring this up from the basement and place it just so in her room. That Boo WANTED this castle, relayed it to her sister and made it happen.
Some Milestones are different than others. This one is pretty freaking cool to me. That Abby grabbed my phone to capture it, amazing and so grateful my girl is so wonderful.
Both of them.
Life is too short for me to be a helicopter parent. I’m involved. I’m on the PTA. I badger Abby over her homework, her flute practice and cleaning her room. I communicate with Boo’s team (which is another type of parenting, not helicopter). At a PTA event before school started the new Principal asked me if I was happy with Abby’s placement for the next year. I replied, I have no idea. In all honesty I didn’t even know that Abby would have two teachers this year.
I do not place my child in the preferred teacher’s classroom. I do not say she has to have XYZ in her class. When Abby is 15 she will not be able to pick her boss. I think learning in primary school that you have to work for whatever teacher you get is a good lesson. Let her learn now at a young age how to debate, negotiate and comply with the person entrusted to educate her.
Our town is going through an enormous transition in the school system. There have been a lot of changes, from pre-kindergarten to eighth grade. It has in both good ways and bad brought out the helicopter parent in a lot of the community.
In addition to the transition our school system has instituted new security measures and traffic patterns. It’s the traffic management that set my life is too short, snap out of it moment. Here’s the deal:
Previously if you drove your child to school (even though they could walk or take the bus) you would let little Patsy get out of the car and text, email, play words with friends watch her like an Eagle Scout as she walked the 25 feet from your car door to the front door of the school.
You do this because there is an off-chance little Patsy could be abducted by aliens on her way into school.
The new system (which is working at two other schools in town) is that you now drop your child off and drive to work, the gym, wherever you go when your child is at school. A teacher (or two) directs the children and keeps and makes sure no one dawdles on the way to class. You do not stop and hold up the 25 cars behind you who are trying to get somewhere on time. You can, if you wish, park your car and get out of it and walk your child to the sidewalk where you can watch or walk with them walk into the school.
Of course Facebook lit up brighter than NYC on New Year’s Eve with parent comments. One person wrote that they asked the administration “if the school was now taking responsibility for all the kids from the moment they are on school grounds without a parent present, she danced around the question like Sugar Ray Leonard, never actually answering the question”.
Hmm…really? This is a question posed to the school administration? I think they “danced” around the question because they were not allowed to say: Look you fool, we take personal responsibility for every child in our system. It doesn’t matter if they are walking into the school or out of it. It doesn’t matter if they are in gym, the playground, the art room or in the classroom.
Unless you home school (and you are my hero if you do) a parent is not present with their child 24/7. If you are seriously worried that little Patsy is going to come to harm walking from your car to the door of the school there are bigger issues. Just think what could happen while you are not there:
They could get colored on in art! Or worse eat the art.They could fall from the slide on the playground.They could need a band aid.They might color outside the lines in kindergarten.They might make friends, get dirty, learn to negotiate and be a little independent.
Oh the horror, they might make friendships without you. I think that is a more likely fear than the alien abduction, personally.
If you want to become involved in the traffic policy, the transitioning of the schools, school security I say fantastic! At the first PTA meeting of the year we had 18 attendees out of a school of 500+ children. Of those who attended: 3 from administration, 1 teacher, the E-board of the PTA, the past PTA President and VP and 6 other parents. After Sandy Hook we held a school safety meeting 12 parents attended. It takes more to keep your child safe then watching them walk from your car to the front door.
I know the excuses: I work, I do this or that I don’t have time let me wave the flag of BS. I work full-time, I blog, I’m active on the PTA, I take care of two active girls, I attend Boo’s doctor and therapy appointments, I take Abby to her Flute and Riding lessons and I remember to be a wife sometimes. There is time to get involved it just takes creative planning.
My point, to fellow parents, is relax! Life is too short for you to worry so much. If you are a child of the 70’s or 80’s you played outside (alone), you walked to school (alone), your parent did not handpick your teacher (or friends) and you survived. Yes, I understand we live in a different world. A world of 9/11 and Sandy Hook and Columbine. I agree we have to be vigilant, we have to be involved and aware.
You also have to know when to let your child fly.
And if your child is abducted by aliens walking from your car to the front of the school while a teacher watches, I will be the first one to sign up for helicopter lessons.
This was how I answered the prompt Life is too short for….
