My Challenge: Mardra

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. 

TBT-where would I live?

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 Traveling

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.

Sleep?

Last night when I was up with Boo, 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.

My Challenge: Allie

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.

When Allie first sent it to me she wasn't sure if it was the type of post I had in mind for the Challenge series. After reading her words I was nodding my head and I think you will too.

*********************

This week

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.

Dear Helicopter Parents, Snap out of it

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. 

Sometimes

**Warning Rant Ahead**

Some times....I hate this life. I hate that as much as I love Abby I fear those teenage years. I hate that one day she will go through a period of her life where we will not understand one another.

But I accept that. 

Knowledge is just as important as inclusion

Boo is in an integrated preschool. A school where for every child that has a disability there is one typical child. The disabilities range from autism to ADHD to Down Syndrome to Cerebral Palsy to Boo. At a quick glance at the class you might not be able to tell which child is typical and which child is brilliant.

Which is the whole point of the program.

My Challenge: Stacey

You know when you graduate high school you know, just know, that you will never forget those who shared those torturous four years with? Then you grow up and move on. One of the wonders of Facebook is reconnecting with friends long forgotten. Lucky for me an old friend, Stacey and I found one another recently.   

I am so thankful she is willing to share her challenge today.

She's smarter than her father

The other night I had a PTA meeting (yes, I still haven't quite escaped). I pulled into the driveway at 9:15 pm. As I walked up the house steps I noticed David was asleep on the love seat. 

Abby was awake laying on the couch.

Me: Um...dear? Your bedtime is 8pm. 
Abby: Well Daddy didn't put me to bed.

Me: What were you watching?
Abby: Buying Hawaii, it's actually pretty interesting.

Me: .......
Abby: I knew if I changed the station Daddy would wake up

I wasn't quite sure if I should punish her (or her father) for staying up past her bedtime or admire that she was smart enough how to accomplish it.

9/11

When 9/11 happened I remember turning to someone and saying in 10 years I do not want anyone to forget this moment when we were brought to our knees and then stood tall together.

Man, woman and child. 

Christian, Atheist, Jew and Muslim. 

Getting dirty and finding myself

This weekend I ran in the Mudderella Boston Event. There were a couple of hiccups. The run was supposed to be in Mass and ended up in Maine. This meant I had a 4 hour drive to run in the mud.  A lot of people were upset and decided not to go. 

They made a mistake. They missed out on something I have never experienced in a race before. I've done quite a few of the obstacle races and more than a few 5k races. Mudderella wasn't a race though...it is an experience.

If you let it, it can be life changing.

My Challenge: Sylvia

I am so happy to introduce you to my friend, Sylvia. I met Sylvia through the World of the Blog a few years ago. She is the mother of nine, that is NINE, beautiful children. All of whom were home schooled and home birthed.  I am in awe of her patience and so touched that she is sharing her challenge with us today. 

It's the end of summer

At the end of each summer, I always feel YES! THEY ARE GOING BACK TO SCHOOL! There is usually a happy dance that quickly follows. Sometimes there is singing. This summer for some very weird reason is different. 

This summer was freaking fantastic. 

You are not alone

A year ago, Kelli Stapeleton failed to kill herself and her daughter. Issy recovered from her injuries and Kelli went to jail awaiting trial. Yesterday it is reported she plead guilty. Before you judge her and her situation, I ask that you read today's Throw Back Thursday Post: Remember the Parent. Remember to offer to help before you offer to judge. Talk to that woman in the elevator. Offer support, a shoulder or empathy before offering judgement of a life you know nothing about. 

More importantly to the mom who is facing a situation like Kelli, remember you are not alone. I'm here. I'm listening. Reach out now before it is too late. There are ways to get your village of support. There are people who understand. If you are desperate, know that you are not alone. You just have to call. You might not think so, you might be in such a dark place that you think you are alone that no one understands. You are wrong, so wrong.

The Good Smaratians  1-877-870-4673 or the National Suicide Prevention  24/7 hotline for assistance: 1-877-273-TALK Or please utilize the Autism Speaks Crisis Intervention to find more avenues of support. 

Or contact me, Kerri at firebailey@gmail.com  I might not be able to help but I can listen. I can be there. I can help you find support.

Just know that you are not alone.

The post below was originally posted 23-SEP-2013

I've been really hesitant to write this post. First, I hate to jump on a bandwagon. I also hate being late to a party, even a pity one. Mostly, though, I do not ever want to come across as ungrateful or one that complains.

Truthfully, I have absolutely nothing to complain about. I am beyond lucky. I acknowledge that my situation is as wonderful as it is rare. I have a terrific village who supports my sanity. When life gets overwhelming I have some one within a text, an e-mail, a call or a walk to lean on. I get date nights with my husband and girls night in.

Not everyone is this lucky. They are isolated. They stay at home with their child, change how they go to Worship, do not attend family events, cannot find a babysitter and not even think about getting a pedicure. Moms like Kelli try to do everything right. They think that it is less disruptive for their child to stay home. They feel family gatherings are too hard to keep everything together and peaceful.

I do not know Kelli and only know about her circumstance from Julie, Jill and Kristi's blogs. But I do know that not every child is like Boo. Some children with special needs are violent. They hurt themselves and those who love them the most.

When Kelli tried to kill herself and her daughter there was a lot of condemnation.  People have a difficult time understanding suicide. Let alone a mom who tries to harm her child.

The sad truth is, Kelli is not the only one out there. Statistically children in the US with special needs account for almost 10% of those who are abused. And they are abused by their caregivers. This is not just the US. World-wide disabled children are harmed more often than typical.

This is just supposition on my part, but I believe the abuse and the killings and the suicides happen because the parent has little or no support. We are very lucky where we live. Our Boo has a terrific school, after school therapies and other support. But those therapists and teachers deal with our children hitting, spitting and hurting them. Yet they love our kids. They want our children to succeed.

Parents and caregivers are becoming the walking wounded, suffering from post-traumatic stress of living and working with a child who punches, kicks, sets fire to the house and destroys relationships. We love our children. We hate what their disability makes them do.

There is a difference.

There is also a reason why persons who work with children and adults with special needs have an extremely high burnout rate.

While our children in the US have a tremendous amount of government support available (if you know where to ask) for them, there is zero support for the caregiver. I am not talking about financial. I am talking about emotional support. That shoulder that you need to lean on.

Since I have that support I know full well what those of you without it must be feeling. Know that you are not alone but you have to let us know you need it. My friends know because I go to them. I break with Boo's therapists and vent to her aides. Sure a few will reach out, but the responsibility is mine to say I cannot do it on my own.

So I implore you, the Kelli's out there, to know you are not alone. But you need to scream and raise the white flag.

And if you know a parent out there with a child who has special needs reach out. Stop by their house tonight with a pizza and a bottle of wine. Stop by and check in on them. Keep inviting them to events, even if they have to say no. Remember that e-mail is great, but you can hide there. Call, speak to them. Make sure they know you are available to listen without judgment.

Let what happened to Kelli be a lesson to all of us to reach out before there is no one there to catch.

When they are not perfect

I recently received a panicked text from a good friend of mine. Her son had just been "maybe" diagnosed with Asperger's. My friend didn't understand why she was so upset. She had long suspected something was off (?) with her son. He was certainly different in social situations than her other children. (One of whom is a diva extraordinaire) She had questioned doctors before and always been told "no". But she kept asking because in her heart she worried.

When she got the report she knew what it could contain. So why was she breaking in the supermarket parking lot?

I wish

Dear Abby,

Today you started fifth grade. I'm amazed by you. You still retain the little girl I love as you grow into a preteen. You are not perfect, but neither am I. Although I wish you were not such a picky eater I know that, like me, you will one day eat a meal without me saying JUST TRY IT.

My Challenge: Echo

Today's My Challenge is from Echo a mom blogger who writes about the joys and tears of home schooling two children, one with autism and one with a diva issue. 

******