Today was the first anniversary of Boo’s IEP. Last year I walked into the meeting having no idea what to expect. This is something else left out of that What to Expect book…..

Last year, when Boo entered the integrated preschool I was not in love with the program. I did not know how to be forceful with Boo’s needs. I didn’t realize that if it wasn’t written on a piece of paper and signed off by 45 different people Boo would not get the level of care she needs.  Within 3 months her teacher realized that Boo needed more, and advocated that Boo continue in the integrated part-time but move to a program dedicated to special needs 1:1 education. Within 3 months of Boo starting that hybrid program she began to talk, interract more and just blossomed.

So, this year, I was more prepared. I read up on how to approach the meeting, what ideas to have at the ready, what concerns I may need to raise. Yes, I obsessed over this meeting.
And I honestly have to say, I was worried for nothing.


I have heard and read about the horror of the IEP meeting. And I am sure that my Polly-anna attitude is due to Boo being in preschool and not the lower elementary grade (or worse, the higher). Our town school system has such a unique program in place to capture children right after Early Intervention.

And it works.

I am lucky to live in a town that understands the quicker you start therapies in the child’s life the more likely chance the child will respond. That is willing to give an almost 4YO an aide, whose sole responsiblity is to make sure that 1. Boo doesn’t escape and 2. that Boo is engaged in the classroom.

What I didn’t understand is why we couldn’t just write, “Reviewed and Renewed” on the IEP. Instead of meeting for an hour, having to rewrite the plan and then send off the form for 45 signatures!

I read this blog  They Walk Among Us posting by Robert Rummel-Hudson. It is a quirky little post about the mystical special needs father. They are such mysterious creatures they could have a support group with the Yeti, Big Foot and the Loch Ness Monster.

Now I know, Boo is an incredible lucky girl. She has two involved parents. Heck most “normal” children don’t have 2 parents who love and support them. Let alone a big sister who tells the babysitter that Boo cannot have peanut butter because it is dairy (well you can see her confusion butter).

Do I make the majority of decisions for Boo? Yes, but her dad is 100% on her side. We split the therapy appointments so we both know what is going on with her. And I am usually the one who stays in the hospital or up with her when she doesn’t sleep. I tend to do the majority of MD appointments. But that doesn’t mean her dad isn’t involved. It just means we have another child who needs a parent too.

He is the one who constantly goes over body parts, comforts her when she is frustrated and will blow bubbles for hours on end. He is more the playmate (to both girls) than I am. But he is never ‘babysitting’. He loves to brag about how far Boo has come.

Because I have an understanding boss and Husband has a very nice schedule Boo’s care doesn’t fall on just one of us. We are both the bread winner and the care giver. This makes it nice because while we get burnt out, we can keep our  rule that only one of us can get crazy at a time.

I’m not bragging because I know I am not alone. Sure I am probably one of the few who’s husband isn’t lucky enough to be home during the daylight hours. But I know there are more involved dads out there.

I for sure know that they are not a mystical creature!

Throw Back Thursday. This post was first published on 20-NOV-2012. I hope you enjoy this trip down memory lane with me.

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When I became a mom I had absolutely no idea I would also become a mystical figure. I have morphed into Santa Claus, an Easter Bunny, a Leprechaun (don’t ask), had to dress up for Halloween and become a fairy. Not just any fairy mind you, but the all important Tooth Fairy.

And did you know that every person has their own special fairy? Yup, me neither. I thought they were all named Tooth Fairy. But as I found last night. This, my friends is not true. There is more to this than when we were little. Now there are notes and expectations I never in  my life imagined.

 Not only did I have to think of a name (Annabeth–I am reading the Percy Series), I had to figure out what I like to do (ride Pegasus and Unicorns), did I know a tooth fairy named Celestia (nope, but apparently Annabeth recalled Allie reading a fairy book with a fairy named Zoe). On the back was a lovely picture Allie had drawn.

So Annabeth took the picture and tooth. She left a note of reply and a dollar bill. Allie woke up this morning and proclaimed: This is horrible! My fairy took my presents but didn’t leave me anything. And last year I got FIVE DOLLARS!!!

Now, I was sure COMPLETELY sure that Annabeth had taken care of everything late last night when Boo was up screaming. I asked Allie if she was sure, did she check under all of her pillows. Nope. Annabeth is a foolish fairy who didn’t realize that she was supposed to put the treasure right where Allie expected it to be. Except, Allie is kind of worried.

You see, last year she got FIVE dollars. And this year the Tooth Fairy Annabeth only left her ONE dollar. Allie said she figured out why:



“Wow, I guess you and Daddy were right. The economy is so bad even the Tooth Fairy had to cut back”.

Lessons learned, my friends, lessons learned.

I confess to being one of those undecided voters. Even with less than 24 hours before I vote, I am concerned that I do not fully endorse or heck even like either Presidential candidate. The local level, I am sure of whom I approve. But on the Grand Stage? I am concerned on many levels. 

Three simple questions I have about tomorrow’s election:

1. Do either of the candidates realize that the people of NY and NJ, who have so much going on with their lives right now, understand that their votes must count too?
2. Do the candidates realize that if they spent as much money on the national debt as they have spent on advertising, calling my house 45 times in one day, traveling (planes, trains and automobiles) and support our Country would be completely debt free and the recession would be over? And we might be able to cure homelessness, healthcare and feed the poor?
3. Do the politicians realize that they are supposed to work for us, those who elect them and not the lobbyists that paid for all that encompasses #3?

If either candidate could answer one of those questions, I would promise them my vote!

One question I do not have, is that our votes must count. Otherwise we cannot complain about the State of Our Union. So tomorrow, November 6th please vote. Even if our votes may cancel one another out it is still important for our voices to be heard.

If this is what having ADHD is like, children (and their parents/teachers/anyone they come into contact with) have my complete and utter empathy. They already had my sympathy and definitely more patience than I ever could imagine. Before the Prednisone. After the Prednisone? I am wondering exactly how they manage not to be in the principals office for bouncing off the walls during class.

Today, I made the mistake of having a Diet Coke. At work, while having to concentrate on very sensitive documents. It was not a good idea. I could hardly focus and when I answered the phone, my coworker told me that I was talking too fast for her to understand.

For the first time in her almost 4-years, Boo went trick-or treating. She almost didn’t make it—-

kicking in screaming in her costume!

But as usual, Allie-Kat prevailed and smiles were quickly photographed!

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.

When you have a child and there is a big storm you get inventive on how to pass the time!