Monthly Archives: October 2012

Being safe

Do you have a safe person? I wasn’t familiar with the term, until I read “Shut Up About Your Perfect Kid” by Gina Gallagher and Patricia Konjoian. According to the authors, a safe person is the one who:

“Allows you to be confused and crazy”

“Listens to you, hears you, and encourages you to keep talking”

“Is clear, direct, and honest with you”

“Listens to you for as long as it takes”

I am so lucky that I do have a safe person. Tia. Tia and I have been friends since we were 12 years old. We have survived junior high, high school, her going to college at 18 and me going to college at 30. We have been together thru boyfriends and husbands. We have listened to one another, fought with one another and loved one another thru our lives ups and downs. Heck, we survived turning 40 together!

Surviving 40

Although we have not lived near one another since juniors in high school, she has been my best friend, my therapist and my rock.

 Everyone needs a safe person. A mom with a special needs child needs one more than ever. As much as I love and admire my husband, he cannot be Tia. Tia has listened to me brag about Allie. That first child where you proclaim their greatness. I have listened (I hope) to her rightfully brag about her wonderful son. 

Surviving toddlers

When Boo was born, Tia was the one person I could count on to listen and not always advise. She let me find my own voice and encouraged me to be Boo’s advocate. When I wanted to walk in the NSTAR Walk for Children’s Hospital in thanks for the care Boo received, Tia was the first one to join my team. She has made it every year since.

Surviving Boo

What I love most about Tia is that not only was she the first one accept Boo for who she is, Tia always seems to say or ask the right things. When I was freaking about Boo’s surgery, Tia reined me in. She also knows when to pour the wine and when to just hand over the bottle.

The best thing? Your safe person will also lean on you.  Tia doesn’t hold back because she thinks I am under too much stress. She knows that I need to be more than Boo’s advocate. I have to be me.

Because of distance, we only see one another a couple of times a year. Unfairly, she has to travel to see me more than I can travel to see her. Being a safe person doesn’t mean you have to live close geographically. You just have to be close at heart. And have access to text and e-mail.

My wish for you, reading this blog, is that you have a safe person. If you do not have one, I wish for you to find one. That, at it’s core, is what I believe the 31 for 21 is about. Knowing that you have a community of support. One that listens, never judges, provides worthwhile advice that you can take or leave. Your child doesn’t have to have Down Syndrome. You just have to be there for another parent.

My wish for you is to find a Tia and hold on tight.

A quiet Sunday before the Storm

Boo is content to cuddle (yes, we skipped Church)

Crazy puppy has his provisions

Yes, the bone is as long as he is tall

Allie has a craft-slash-bake project for me, we skipped CCD too (pray for me NOW)

Husband is at work, I figure he will be home sometime on Wednesday.

And I have bread, milk and wine.

It should be fine, right? And did I mention we have the cake that Allie won at the Boofest Cake Walk?

What can go wrong if we have cake & wine?

And pinot grigio? Happy Sandy everyone. I hope you and yours are safe!

It’s the thought that counts, right?

Of all the gifts my husband has given me: his love, our children and our home. He could’ve kept the poison ivy. I am still unsure after being ivy-free for over 40 years all of a sudden I am allergic. 

But my Saturday has consisted of first coming to terms with the fact that I am not immune and then finding:

Let’s hope it works!


I’m dumbfounded

Yep, dumbfounded. In our 24hour news cycle, everyone has forgotten about Ann. And I do not want to give her more press. But I sent my Dear Ann letter to Fox News (local and national) and our local papers/news outlets. Yet none, to my knowledge have responded. 

Friends on Facebook have been patient and supportive with my rantings. And I admit to ranting. 

But why isn’t this news? Where the heck is Sarah Palin? 

Are you as crazed as I am? 

Maybe it is because Boo is undiagnosed and therefore I do not have an answer for my ranting other than she falls into the category as “special needs”. But knowing that in a previous age my daughter would have been called the “R” word, I continue to be incensed. 

I know that forgiveness and understanding falls under the Golden Rule. But if the person that offends never acknowledges that they did wrong, do we still forgive?

Not so easy for me.

It’s scary what you can sign up for..

About four months ago one of Boo’s aides asked me to sit in on a PTA meeting. Within the first 15 minutes I was voted in as the co-Secretary of the PTA for 2012-2013. And while I definetly got hoodwinked (2 hours a month, yeah right!), I am glad I stuck it out.

I have made friends with an amazing group of parents. For the first time I am involved with what Allie is doing at school. Due to work and Boo commitments, I can only volunteer for the evening events. To Allie’s delight this has meant for the first time she has been able to enjoy Movie Night and Family Night at the Book Fair. And now she is over the moon for Boofest. 

Boofest is a Halloween celebration at her school, with carnival games and wait for it…a cake walk. So last night after work I made three dozen whoopee pies (okay almost 3 dozen, I had to test for quality) and a cake for the infamous cake walk. I am not crafy, in any way shape or form. But I do not think I will be embarrassing Allie tonight.

My humble attempt at a theme cake

So tonight Boo is going to her grandmothers. My husband and I are both attending Boofest. We will be combining volunteering and having our ear drums punished with watching Allie have the time of her life. Allie has already told me she is signing me up for the PTA for the REST OF HER LIFE.

I also see a glass of pinot grigio in my future. Maybe a vat. Do they still make vats? 

Happy Friday everyone!

The "R" Word Wake-up

Last night I had dinner out (yeah me, no kids!) with a very good friend of mine. We talked about how incensed I was over Ann Coulter’s remarks. It was obvious from the amount of Facebook posts I had done over the past 24 hours that I was more than a little irritated.

My friend was appalled, even though she tends to be a Coulter fan. She told me she never would have thought anything of the remark, had she not known and loved Boo. I explained how distressing it was that some day I would have to talk with my older daughter to explain that her sister is not retarded and what the difference betweent that horrid word and intellectual disability actually mean. My friend completely agreed that Ann Coulter was completely out of line and out of control with her repeated insults.

I expressed my fear that one day her sister would look at Boo and not see beautiful. My friend listened and agreed. As we were leaving she said something inconsequential and we laughed. Then she said, I cannot believe I could be so retarded.

My heart dropped.

Her expression got a deer in the headlights look. Her mouth dropped open and she said:

I never realized how often I might use that word and not even realize it.

Words have power.

On the Love That Max page yesterday some one commented that all the outraged parents were crybabies. I replied, no we are advocates. Until you know a child like Boo, until you are confronted with the fears, tears, joy and laughter you have no idea how powerful the word can be.

So I encourage all of us to have an open dialogue with our friends and family. Those, who unlike Ann Coulter, matter to us. They might not know they are breaking your heart.

Until you tell them.

Dear Ann

Dear Ann,

May I call you Ann? I feel we can be informal since you feel so comfortable insulting my child. I mean, really, only family should be able to make us think that we are not good enough. On the other hand….

You, MS. COULTER, are not my family. You are not of my world, my life, my heart.

Because you, Ms. Coulter, from your bully pulpit are comfortable enough behind the camera. But have you ever had to face the affect of your insults and disparaging remarks? When you attack public figures, I usually give you some leeway. After all, they are grown-ups who have had to develop a thick skin in order to navigate life in the public eye.

But my child? My child, Ms. Coulter, does not and should not ever be the brunt of your pitiful attacks. Neither has her sister. A sister who knows that calling some one a retard is wrong but not why. You, Ms. Coulter, do not have to explain to your 9-year old that her sister is not retarded but intellectually disabled.

You see, Ms. Coulter, in your complete and utter ignorance, do not realize that when you call our President a retard (which by the way, should be treasonous no matter what your political leanings) you are not insulting him. You are, in fact, insulting the estimated 2.5 million US citizens you do not even acknowledge.

That is the sad truth, isn’t it Ms. Coulter? You do not SEE those who are intellectually disabled. You only see your own agenda and how to get your name in the headlines. Doing it by insulting my daughter and others like her, that is heinous.   

I know the arguments for using the word retard. I have this discussion with friends and family members. I am from the generation where you could call some one “gay” but not mean homosexual. I am from the generation where retard was an insult you called your friends in a lighthearted manner.

But, unlike you, Ms. Coulter, I grew up. And unlike you, I am lucky to have an intellectually disabled child who only knows love. But some day, unfortunately she and her sister will come into contact with some one like you. I fear that day. I fear the day when some one looks at my daughter and sees a RETARD and not a beautiful girl. 

I ask you, Ms. Coulter to look at this face:

and tell her sister Allie that her beloved sister is retard. Because that is what you did when you thought you were insulting the President of the United States of America. 

From a mom who knows better,

Hat’s off to stay at home moms

It’s Tuesday and I am still recovering from the weekend. It seems that the weekends are more draining than the hustle of Mon-Fri. I think it is because on Monday mornings I can look at the calendar for the comming week and see what to expect.

The weekends are a different story. Sure, Boo has yoga and Allie has a couple of activities. But by the time you have the house cleaned, laundry done and keeping two girls entertained….enough is enough!

I cannot tell you how many laps Boo and I did around the fire pit this weekend (thankfully the shoes stayed on). Between playing with Allie, carting the girls to their different activities and simply just being a mom….I looked forward to going to work on Monday.

So, to the stay at home mom’s out there. You have my admiration. I really do not know how you can stay sane!

I lift my wine glass to all of you!