Category Archives: 31 for 21

3/21 World Down Syndrome Day

Today is World Down Syndrome Day, celebrated by showing the ability. Although Bridget doesn’t have Down Syndrome one of her best buddies does. Honestly a part of me feels silly writing today, like I am jumping on the advocacy wagon for a syndrome my own child doesn’t even have.

But today is important. Today you must see the ability. You must acknowledge that all children make an impact, those with Down syndrome, cerebral palsy, epilepsy, autism, multiple sclerosis and those children who are sadly typical without that something extra (pun intended). 

You must acknowledge, today and every day, that children are different. That adults are different. That if we were all the same the “r” word wouldn’t hurt. That advocacy means you stand up and speak up to support those who need acceptance and tolerance. When you see the world through your child’s eye you do not see race, gender, body-size or disability. They see their friend. 

World Down Syndrome Day is centered on choosing to see a child through their ability and not their disability. Children should be celebrated. Children should be encouraged to live life to their potential. Your child comes with unlimited possibilities and not one instruction manual.

Boo and her friends shouldn’t be pitied. They and their parents are not heroes. They live life to the fullest. Their milestones are celebrated a little more because they have worked hard to achieve the smallest step. Just like your child a person with special needs has determination, stubbornness, laughter and love. They go to school, join Girl and Boy Scouts, play sports and have friends.

They also have something a little extra: sometimes an extra chromosome or an undiagnosed syndrome. But life would be pretty boring if the only ice cream we had to eat was vanilla. People shouldn’t be the same. We should celebrate our differences and our abilities.

Take today 3/21 and celebrate those with something extra. Like jimmies. 


For more information regarding Down Syndrome:
Heartbeats for Down Syndrome
Massachusetts Down Syndrome Congress http://www.mdsc.org/
National Down Syndrome Society 
http://www.ndss.org/Down-Syndrome/
World Down Syndrome Day 
http://www.worlddownsyndromeday.org/

A few friends of mine are participating in a “Day in the Life” stories from parents whose child has Down Syndrome. Please take a moment and check them out, they are kind of cool!

The Bates Motel
Big Blueberry Eyes

A funny thing

A funny thing happened on the way to becoming Boo’s mom. I knew Boo was not going to be the same from Abby right from the start. In a way that does not diminish my love and adoration for her sister, but in a way that makes me a better mom to both.  However her being Boo turned me into mom that celebrates moments that shouldn’t happen.
Those who know this story are probably bored by now, but with Boo I am reminded every moment is precious. Even when she shits down my leg I can think “EW” and “wow she said poop” at the exact same moment. The thought that follows close after is thank the Good Lord and all that is Holy I had pants on. 

There have been times when I have been in shorts.

When Boo runs to her sister to get her off the bus I think this is the child who Early Intervention told me might never walk.  I rejoice because I can think of not one other person who gets to see their children race towards one another every afternoon at 4pm. Trust me on this, I never raced to get my brother off the bus.

 
When Boo says “mum” over and over again I never get tired of hearing her voice. I may wish for an indoor voice at 6am but I never shut the monitor off. I lay in bed and think wow she is up to her 20th word in a row. This is the child I worried would never speak and had her entire family learning sign language to help her communicate.

When I walk into the kitchen and find that Boo has relocated the furniture, managed to climb up the chair and is laughing like a loon I think to myself this is the girl they say has poor motor planning skills.

A funny thing happened on the way to becoming a mom…I became a mom of a child with special needs. Not only special but unique. One who five years later science still does not have a true diagnosis, other than unknown genetic syndrome. With a lot of other issues.

A funny thing happened on the way to becoming a mom with a child who has special needs I discovered what really matters in life.

 

Finish the Sentence Friday

A year of thankful

I haven’t played with Lizzi in a while. Not that I haven’t been thankful, just been to busy to give Thanks. I am sure I’m not the only one! To suck up show how thankful I am here I am breaking the rules (go figure) and doing 12 things of thankful. One for every month of 2013 I survived. 

January, I was thankful for the Liebster award.

February, I was thankful for Abby’s sense of humor and honest about who her favorite person is (hint, not me).

March, I was thankful for people understanding that the word Retard means something different to me now and joining me in abolishing the word.

April made me thankful for Jimmy Buffett as I realize he gives us the soundtrack for a laid back life. The sound track, not the manual.

May I was thankful to be able to tell people what drives me crazy.

June I was not thankful for yard work but happy to know I am not alone.

July I was thankful for all the ways my girls make me smile.

August I was thankful for husbands.

September I was thankful the girls were back in school. Also that boys are gross.

October I was thankful for Boo’s therapists and friends that let me take the easy way out.

November I was just thankful for Boo.

December I am thankful that I have come a long way since January.




Ten Things of Thankful

Would you CARE?

It’s the last day of the 31 for 21 Challenge. I didn’t really make the goal of blogging everyday. However I was beyond happy to participate. As this is the last day I was thinking about Robert Saylor. How this young man with Down Syndrome lost his life because those who are there to protect were not trained to work with those whom have special needs.

Because while you might be aware of Down Syndrome you might not really understand it.


Then last week I read an article about the C.A.R.E. program. C.A.R.E. stands for Children and Residents Encounter program. It is the brainchild of the Colerain, OH police department. To my understanding, this program is designed to educate emergency personnel to those within their community with special needs. Be it Alzheimer’s, autism, mental health issues or behavioral issues.

Colerain has an estimated 1 out of every 150 residents on the autism spectrum. Chances are pretty great that at one point the emergency personnel will come into contact with a person who has special needs.

C.A.R.E. is a program where the family gives the emergency personnel information regarding the child’s (or adult) health and mental issues. The parent provides detailed information: are they on a monitor, do they have anger issues, what medication are they on, do they elope, what if anything do the police need to know if they are responding to your home or anyplace in town where that person might be in need of assistance.

Just think, if the police had known about Robert he might have lived. They would have been aware of his triggers, known he had Down Syndrome and been trained to deal with a person who has diminished capacity.

Yes, apologies to all the parents I just offended, but our children have diminished capacity and do not understand that  their behavior has unintended consequences. Sadly, neither are the first responders always educated.

One argument against C.A.R.E. is that we are giving up our children’s privacy. Do you really want your neighbor who listens to the police scanner (my MIL) know that your child is suffering from (insert your child’s diagnosis here).  Heck, I do it everyday here on this blog! But I see their point. Some parents are not “out” they don’t want the neighborhood to know that their child is autistic or bipolar or clinically depressed.

But in an emergency does privacy matter? If your child has suicidal tendencies wouldn’t you want the first responders to know? If your child is prone to throwing lamps in anger wouldn’t you want the first responders not to respond with force but with patience and kindness? If you child is deaf and does not hear the police say stop as they run in fear would you like them not to use force?

If you were Robert’s mom wouldn’t you have wanted the police to know that her child didn’t understand why he couldn’t just rewatch the movie? While I have never met Ms. Saylor I can imagine her anguish.

Upon learning about the C.A.R.E. program, I reached out to our local police and fire departments. I asked them about signing onto the program, or a similar idea. I explained how the Ohio police department minimized training costs and related expenses. They replied that this was one of their long-term goals.

Which I appreciate.

But I want more. I don’t want a goal I want a program. I want our police and fire to have a card on Boo. I want them to know her name, what she looks like and how to react should they encounter her during one of her eloping episodes.

Screw her privacy. Her life is more important.

To be preachy, so should your child’s. Forget their privacy or your embarrassment. Contact your local police and fire departments. Tell them about C.A.R.E. or another program that will protect everyone. If that doesn’t work, tell them about your child! Tell them you have a child in your home that has special needs and they NEED to have this information.

Think of Izzy and her mom, whom the area hospital knew and still couldn’t protect.

Think of your child and their temper tantrums. When they are out of control and you are doing the best you can but the neighbors call the cops to protect you.

Think of your child who climbs or wanders and the new neighbors do not understand that your daughter is autistic and does not realize they cannot swim in any pool they come across.

Think of your son who is manic depressive and might encounter emergency personnel during one of his psychotic breaks.

Truthfully, the neighbors and police and EMS are not wrong. When faced with an out of control person or a child that looks much older than they are developmentally, they have no other thought than to protect those in control. They will try to reason or restrain with compassion. But in fear for themselves and those around them they will also respond with force.

It is not anyone’s fault. Not your neighbor’s for calling the police, not the police for seeing an out of control person and trying to restrain them, not your child’s fault for having a disability and not your fault either. Ultimately we need to protect our children and those they come into contact. I think C.A.R.E. is a great start.

Think of Robert and know that could be your child.

Screw privacy and think protection.
 In Robert’s Memory and in Respect for a mother’s grief I end this month of Down Syndrome awareness in their honor.

Not everything needs a tag line

Dear Chicago Tribune,

I am not a resident of your city and in fact have only visited Chicago once in my life. But I am requesting on behalf of the parents in your community to redefine the newest tax approach for Kane County.


The premise is nice, from my reading, the intent is to increase property taxes in Kane County, IL to create funds to support individuals with developmental disabilities. As a mother of a child with special needs I usually support anything that will assist my child receive the services she desperately needs.

But to call it a disability tax?

How about calling it a social service tax? Or Community Building tax? Or even help thy neighbor tax? 

The services provided would include: education, therapy, training and other services to allow those with developmental disabilities the opportunity for independent living. These same individuals with your county’s support would then become a part of your working community.

As a home owner from Massachusetts, I agree taxes are out of control. After all, we are number 6 in the US for highest residential property tax rate.

I do not wish my child’s disability to be a ‘ tax burden’ on anyone. And I agree with the opponents who say that the tax code need to be redrawn and that the federal and state support should be better mandated.  However, I am thankful that she is a ‘social burden’ as she enriches everyone’s life she comes into contact. In some ways, I think this is a great idea. Instead of raising your taxes and you not really knowing where the money is being spent, you will see your tax dollars at work. The median household would be spending just $55 a year to impact lives in a meaningful way.

How incredible.

According to the article in the Tribune, Kane County has almost 16,000 residents whom this tax would benefit. I hope it does pass and is used as it is intended and not mired in the bureaucracy that seems to overtake good intentions.

I commend Kane County for taking a proactive approach to inclusion and support. I think it is beyond wonderful that you saw a need for your residents and are doing your very best to enrich their lives.

I just really wish you would think of a different tag line.
 

Thanks

Yesterday was a crap day. For me. Not for Boo though. I wanted to let everyone know that not only did she survive the field trip she enjoyed herself. According to David she not only touched a pumpkin but plucked an apple out of a tree!

I know I wasn’t alone yesterday in my meltdown. Other parents experienced the same emotions I did. They just didn’t spew to the entire world. But I am glad I did. I almost did not post yesterday, fearful that I would offend Boo’s teachers and therapists. Fearful that I would look like an idiot when David took her and Boo did not melt down. Fearful that Boo would melt down and I wouldn’t be there to hold her in my arms.

I want to thank each and every one of you though, for supporting my meltdown with texts, e-mails and comments. I cannot tell you what it meant that you understood. Or if you didn’t understand you empathized.  A friend put it so well, this was a case of mommy guilt at it’s worse. Something we all go through during this crazy period of our life called parenthood.

Since parenthood is going to last for the rest of my life I know that there will be other moments when Mommy Guilt overwhelms me. I always thought Catholic guilt was tough, man I knew nothing before children!!

Including how I never knew that parenting was a team sport. So, thanks to each and every one of you who are on my team.

 
 


The Ultimate Soundtrack

When making my mix-tape this week (on time!) I tried to stay current and then realized that the last 4 movies I have seen were from Disney. Oh, and Grease since that is Boo’s current obsession. Proving I am a product of my teen years my ultimate soundtrack would have to include:


We should probably live by the line: Just once in his life a man has his time and that time is NOW and I am coming alive?


If you are going to have a soundtrack then you need John Cusack to pay your mix tape. In a boom box outside your window.


I always felt bad for Ducky and after St. Elmo’s Fire I never really liked Andrew McCarthy anyway.

 

I fell in love, LOVE, I tell you with Lou Diamond Phillips thanks to La Bamba and of course he played the best Young Gun…


Bon Jovi, Lou Diamond Phillips and a great song? What a way to end my teenage years. But uh to live like a teen in my mix tape, if only Cusack would be in my driveway. Cause I know, just know, if he went to my high school he totally would have crushed on me.

I collect you…NOT

Are you a collector? I mean, serious, as in will ravage any antique/yard/estate/shop sale to obtain some knick-knack? Allie has collections. She has collections of Barbies, Horses (thanks Auntie K), sea glass and Nutcrackers (thanks, mom).

And now there is that freaking rainbow loom. Guess how many bracelet collections she has?

David doesn’t really have collections. He is more of a pack rat. The man has a t-shirt from 1996 (He is wearing it now) and even one from 1983 (REO Speedwagon)–worn last weekend.

Boo has recently started a sticker collection. She doesn’t take the stickers off the backing, but she walks around with them. I blame her Speech therapist.

Me? I don’t collect so much. Don’t get me wrong, I have knick-knacks galore. But I didn’t buy any of them.  I like them, they are unique. Like the baking elves, Williamsburg signs, Cape Cod signs, Carolers (now only out at Christmas) and other what-nots.

I cannot believe I just said what-not.

The collection, though, I am most proud of is my friends. I have kind of an eclectic group. One I am meeting this weekend (woo hoo) for the first time in real life and others I have met via the blog. But also those close to home. The ones that I can just drop by and have a margarita with or a fine glass of wine.

No I do not collect wine. It really doesn’t stay around long enough to collect.

This post was brought to you by



What do you collect? And also by

Six questions with Sylvia

Last week I was not chosen for Blogger Idol. Allie was not surprised.  And I quote: Mom you didn’t try to sign did you?

Today is the first day of Down Syndrome Awareness month and the first day of the 31 for 21 Challenge hosted by my friend Michelle. While Boo does not have Down Syndrome, she has plenty of friends who do. For those friends I will be participating in the challenge once again. Or trying to, at least!

 

What a great way to start the challenge than by answering questions from my friend Sylvia? You can find her at Faithful Mom of 9 (yup, NINE). She tagged me in a game of six questions.

1. Is this how I imagined my life to be? Of course, every little girl imagines that she will be over 40, not living in a castle and married to a guy who thinks nothing of plucking a bird he just shot in the kitchen sink. Ha! In all seriousness, no. This is not the life I imagined at all.

But it is so much better than I could have dreamed. I have a guy, that while he does pluck birds in my sink he also attends the majority of Boo’s therapy appointments and is a hands-on dad. I have a daughter who is a wise-ass but also the most empathetic child I have ever met. I have Boo, who has taught me more about the world around me than all the social studies classes I took in school.

I might not have prince charming or live in a fantasy land. But life is pretty good.

3.What’s your drink of choice when out with girlfriends? Hmmm…let me think 🙂

5.Name something you’ve learned about yourself that has surprised you. I am not quite the wallflower I was in high school. I am more confident that I ever imagined I would be, willing to take risks and a stand for what I believe in.

7. What do I love about myself? That I made some pretty great kids. They are not perfect, but they are mine.

8. If money were no question, I’d purchase…a maid. Seriously, just to clean the bathrooms and the floors. Heck, who am I kidding. If money was no object I would hire a  housekeeper like Mrs. Garrett. They would cook, grocery shop and clean whatever mess David made in the kitchen with those damn birds.

9. What’s your biggest struggle in life? Finding enough time in the day for everything I sign myself up for!

Thank you so much Sylvia for tagging me. In turn I tag:

Kate at http://www.anothercleanslate.com/

K at Transcending CP

Emily at Oh Boy Mom!

Here were the rules:

If you choose to participate please pick six of the following questions to answer!
1. Is this how you imagined your life would be?
2. Name one good deed you did that went unseen.
3. What’s your drink of choice when out with girlfriends?
4. How did your blog come about?
5. Name something you’ve learned about yourself that has surprised you.
6. What hobbies do you have that you don’t mention on your blog?
7. What do you love about yourself?
8. If money were no question, I’d purchase…
9. What’s your biggest struggle in life
?

Please be sure to stop by both Michelle’s and Sylvia’s blogs. You will not be disappointed.