Another goodbye.

Another goodbye.

Grammy BYesterday evening my Grammy Bennett left us. Grammy was an original, I never once met anyone with a Grammy quite like mine. She had a survivor’s tough spirit but her heart was tender. She loved every single one of her children, grandchildren, great-grandchildren and great-great-grandchildren fiercely. Even when we did something unexpectedly (or even expectedly) stupid, her pride and love of us never wavered. Every one of us always knew that we were her favorite.

Grammy & C
Last night, after having sat with her and some of the family all afternoon and evening, I followed my parents back to their house so they could see Caleb and get hugs. Before packing up for the long ride home, we sat at the kitchen table chatting. Then the phone rang. I knew as soon as he identified the number as my uncle Don’s what was coming. Grammy had been fighting for every moment throughout our visit. Once she finally settled we began filtering out. Shortly after everyone had left, she stopped fighting. Until her very last breath, despite how tired she was, she fought to protect us as much as she could.

Grammy & CalebThank you Grammy, for the endless love, the constant support and, of course, my song.

Beautiful, beautiful brown eyes
Beautiful, beautiful brown eyes
Beautiful, beautiful brown eyes
I’ll never love blue eyes again

PS – I never realized that was a real song, now I see why you never sang any of the other verses but only hummed them <3

It is IEP season, let’s make them suck less!

It is IEP season, let’s make them suck less!

Leonard P. Zakim Bunker Hill Bridge, Boston, Massachusetts
Leonard P. Zakim Bunker Hill Bridge, Boston, Massachusetts“by rolando000 is licensed under CC BY-ND 2.0

This is every parent of a child with special needs’ favorite time of year (and if you buy that, I have a gorgeous bridge for sale in Boston…the Zakim, you’ll love it!) Every year at this time the e-mails and facebook posts start piling up as we all try to wrap up the school year.

Schools wanting to remove services or change placements are always the most stressful aspects of the IEP process, in my experience, but every step is stressful. There is nothing fun or relaxing about sitting in a room with a table full of virtual strangers as they list all the ways your child is deficient. IEPs are about deficiencies and delays and every way in which your child differs from the “norms” that they use to measure such things. It’s emotionally and physically draining.

There are ways to make IEPs suck less however! The most important and the easiest is educating yourself about the process. You need to know your rights, your child’s rights & you need to know the proper procedures…you cannot rely on school personnel, as nice as they may be, to protect your rights, your child’s rights or even understand the IEP process. You need to know this cold.

Many parents find the entire process mystifying and confusing. I have totally been there on a bunch of occasions! The process is complicated and there are a lot of rules to follow but do not just say, “It’s too complicated. I will never understand it.” It’s that whole self-fulfilling prophecy thing, if you say that or believe that, it will become the truth. You won’t ever understand the process unless you educate yourself! It is not that mysterious once you know the basic rules.

If you can find and/or afford an experienced Educational Advocate or Special Education Attorney, that is awesome. We’ve had tremendous success using an Advocate. BUT hiring an advocate or lawyer does NOT relieve you of the responsibility of knowing your rights, your child’s rights and the proper procedures. You still need to make the effort to get that basic level of understanding down.

My first suggestion is always attending a class, the Federation for Children with Special Needs here in Massachusetts offers a variety of free courses around the Commonwealth beginning with a Basic Rights workshop. Take a course like that at the very least. It costs you nothing but the time and effort of attending and your child is worth that and so much more, right? Right. If you are not from Massachusetts find out what organizations exist in your state: State Parent Training & Information Centers.

Another favorite of mine are the Wrightslaw seminars (2014/2015 Schedule of Programs), they offer a variety of courses around the country. They are not state specific, federal law guides IEPs and state law must meet or exceed those standards. If your state law does not meet the federal standards, it is not valid. These are not cheap courses, the cost varies depending on the length of the course and the group or agency sponsoring the event, but they provide priceless information.  I have never felt more confident in an IEP meeting than I do now that I’ve attended the course. Now my questions center on appropriate goals and services for my particular child because I’ve got the basics down.

If you cannot attend any basic rights course for whatever reason, there are a ton of books and online resources to use. These are some of my favorites:

National Fragile X Foundation:

Wrightslaw – This is a great site to use if you have a specific question, the search functionality is great and will give you lots of guidance.

I can promise you, you will NOT ever regret making the effort and taking the time to get down the basics. It’s not a guarantee that you will never have a problem because schools continue to find new and creative ways to be total jerks BUT it is a guarantee that you will be able to keep them honest while protecting you and your child’s educational rights. The relief that comes from having that confidence drops the stress level of IEP meetings down tremendously. Even if your IEP is tomorrow, you have time to start…but it is easier if you have a little more time.



Ain’t no mountain high enough.

Ain’t no mountain high enough.

Today is my son’s 10th birthday. For 10 impossibly short years I’ve had the privilege of waking up every morning knowing I am his mommy. It is an honor so profound that I have trouble finding words to describe it.

A few weeks ago, Caleb requested that we take him on a hike. He then whined the entire way up Great Blue Hill. Just before we hit the summit, I asked him if he liked hiking. I suspect you can guess what his response was in that moment.

In response, I told him, “Hills are hard, dude, but you will love the view from the top.” And he did. He also whined the entire way back down because downhill may be easier physically, but it’s a lot scarier when you can see how far you could fall.

Inevitably, when I get to the end of one of these hikes I think to myself, “What was I thinking?” I’m sure I could have found pictures on-line and spared myself the exertion of the climb and the fear of the descent…for what? For a hazy view of the Boston skyline?

But it’s not about the view from the top. My life with him will never be about the view from the top…it will always be about the journey we are on together. Yes, there are times we can rest and enjoy the fruits of our labor but that’s not why we spend weekends hiking together, not really. We do it because I love the feeling of his hand in mine as I help him over an obstacle. We do it because he loves moving forward and meeting people on the trail. We do it because we love to have the chance to be proud of each other. Our hikes are full of praise and support…him supporting and praising me as much as I do him.

“Good job, Money! You did it!” “Thanks bud!”

“You OK, Monkey?” “Yeah, I good.”

My absolute favorite part of the hikes though is seeing him leave me behind. I remember all those years of him clinging to my hand tightly, terrified I would let go and he would slip. I remember the in between years when he knew I would always be one step behind him, giving him the confidence to let go…if he slipped, he knew I’d catch him. Now suddenly we are in a new decade and I am realizing that 10 is actually a mountaintop for us. It was an unexpected joy to realize that we’re now in an new era…one in which I am more and more often many steps behind him, calling out encouragement as he seeks his own way up.

I thought we’d be so much older before this happened. I thought I would be sadder as well. I had no idea that every “I got it.” would just redouble my awe of him, my pride in him, my love for him. I had no idea this would become my new favorite view of him…


I wonder what he’ll teach me next?