Let’s reboot with a bang…

Let’s reboot with a bang…

I disappeared for a while for lots of reasons. Some were good, some were not so good and there was one that is utterly amazing. I want to share the amazing reason with you now. I know lots of people have been waiting for this, it was worth the wait. Promise.

One of our biggest worries was that once we are gone, Caleb would be alone…we’re not worried about that anymore.

 

Introducing….

He’s as sweet as he looks, he’s as much fun as you can imagine and we can’t help but believe that he was made just for us. I’m so glad we can finally share him with everyone!

Love,
ACME

Cue the tears…

Cue the tears…

I was going to simply update the file attached to Back to what now? but then Caleb’s teacher of the last two years returned her portion of the Positive Student Profile. It brought tears to my eyes as I read her “tips” on educating and supporting Caleb.

Caleb Welin, grade 4_Page_1(thumb)

How often do you find a teacher that sees your child just as you do? A few more times for us, I hope. I am so glad I asked her to contribute to it!

Back to what now?

Back to what now?

My facebook feed is lighting up this week with picture after picture of kids heading back to school. First, I have to say whaaaa? Caleb just finished 3rd grade two weeks ago, how are you all back in school?? Labor Day is the end of summer, no one should be back in school before the end of summer! You all are weird.

Next I have to say that, in addition to the many happy photos and excited posts about this new year, I am seeing a lot of anxiety and fear. I get that. I’ll be there in a couple more weeks when it’s time to send my little cherub off to a new year with all new teachers for the first time in 2 years! I’m still hopeful that at least one of the staff members assigned to his class will be familiar but I won’t know that for a while yet.

I have two ways I deal with this anxiety. Initially, I immerse myself in books…science fiction or fantasy with happy endings only (my life has enough reality and sadness, TYVM)so I can stop obsessively picking at the rough edges of my brain. When that tactic begins to fail and the anxiety begins poking through in weird yet strangely vivid dreams. Dreams so vivid that I have to ask my husband which parts of the dreams are real and which were pure dream. (Oddly enough, it’s sometimes the strangest bits of my dreams that are true. No really, someone has designed a penis pedometer. And you are SO welcome for that bit of imagery…I wish I could bleach my brain sometimes. )

When I reach this stage I switch to the next coping mechanism. I go back to picking at the rough edges of my brain but with a purpose. This is when I transform all my fears and my hopes into plans. This is when I start combing through the core curriculum for the 4th grade and figuring out which parts of the curriculum I want Caleb included for. This is when I start creating visuals, breaking down the curriculum into “he can totally do that” and “he’s going to totally try to do that.”

4th Grade Social Studies 4th Grade Science

This is also when I pull out and dust off Caleb’s Positive Student Profile, remind myself what we are working towards and then begin bombarding his teacher with all the “you should”s, and “could we”s I can dream of.

This year I’ve done something a little different with C’s PSP. In the past I’ve been very, very detailed and factual. It’s effective…see his 1st Grade PSP here: Positive Student Profile. This year, I decided to ask Caleb’s teacher of the last two years to contribute to the PSP, I’m leaving the factual, day to day school stuff to her…and I chose to introduce my child as I know him.

Caleb Welin, grade 4_Page_1(thumb)

If you want to read more about PSPs and other back to school crap…Those Freaking IEPs is a good place to start.

If you want to pick through your child’s curriculum, it should be posted on your school department’s website. If not, ask them for a copy.

If you are curious about how I created that document, I used Microsoft Word.

  1. File, New.
  2. Under “Office.com Templates” I chose a template I liked. (“Newsletters” is a good place to start, but “Flyers” has some cool stuff too.)
  3. I replaced the sample text and photos and TADA!)

If you too have a child with fragile X and you want stuff to give your child’s teacher & school staff, but aren’t insane enough to write your own, check out the Back to School Toolkit from the National Fragile X Foundation.

The Mighty C

The Mighty C

Every morning, this boy of mine wakes to a world that is too bright, too loud & too fast. Every day we pray that we can provide him enough love, comfort and security to get him through to the end of the day whole and happy.

Every day we give him his medications, to hopefully smooth the rough edges of the world that will tear at him. Every day we give him his “firsts” and “thens” to sooth the anxiety that can rear it’s head without warning. Every day, I fear we will fail. Some days the fears come true. Some days they do not.

Regardless of whether the fears were justified or not, every night, Caleb hits reset. He greets every morning with joy. After 10 years of living in a body with skin too sensitive and a brain too connected to give him the peace everyone else takes for granted….this boy gets up every morning and shines.

A couple months ago, on a whim, I reached out to a friend who also lives this life and knows what this world is like to boys like mine, like his. I gave him a wish, it was really a prayer though he will be very amused to hear that I sought him out for such a thing. I needed something…something for those days when I am too dejected or worn down by fragile X to imagine for myself what this life is bringing us too. I wanted something to put in front of Caleb to show him…SEE, this is what you are…we see you, we love you, we believe in you.

How could we not when what we see when we look at you is this?

image

It’s like living in the Twighlight Zone sometimes.

It’s like living in the Twighlight Zone sometimes.

This morning I was preparing Caleb’s breakfast like always. He’s in a phase where he only wants grilled ham & cheese. Easy, I can do that! Then, two days ago, we ran out of ham and circumstances have conspired to leave us ham-less.

Yesterday, I cooked him a grilled cheese. He took a bite, peeled the bread apart and told me, “I want ham.” clear as day. YAY! But… “Sorry dude, we don’t have any ham. Eat your grilled cheese.” He ate 1/2 the sandwich and was all DONE breakfast. Fine.

This morning I didn’t want a repeat so I decided to pour him a bowl of cereal (Cinnamon Toast Crunch…total garbage but he LOVES it…) and get him a bowl of yogurt. This IS a Caleb approved substitute breakfast for moments we cannot deliver the grilled ham & cheese (or hot dogs or meat balls his alternate suggestions to us every single time this happens.)

Cereal and yogurt days make me happy because…EASY! I like easy before I start my caffeine consumption for the day! I had a spring in my step right up until I pulled the door of the refrigerator open and remembered that I had finished the milk the night before.

“&**(^(&*&^%*&@#!” was my response to this discovery.

I needed another acceptable substitute breakfast fast…Caleb’s shower was nearly complete. Ahhhhh! I grabbed blueberry waffles from the freezer and popped them in the toaster. Then looked for something that might tempt him to eat them. I sliced up a banana and then remembered HALLELUJAH! We have strawberries in the fridge for strawberry shortcake! They were even sliced and had an nice sugary juice in with them! AND OMG! That’s homemade (Wilson’s Farm) whipped cream!

The spring was back in my step, I might have even tossed in a wiggle or two. I buttered his waffles, cut them up, slathered them with strawberries & bananas and added a dollup of whipped cream. I even took a picture to share on Facebook because, hello, MOM OF THE DAMN YEAR PEOPLE!

See! Just LOOK AT THIS!photo

I got Caleb’s plate on the table with his drink…raising the spoilage a notch it was sweet tea instead of juice…just in time. He came strolling from the bedroom as he pulled his shirt down over his stomach. He looked at me, looked at his plate and told me…

“No like it. Grilled ham cheese?”

I walked back into the kitchen to bang my head on the counter, and maybe drown my sorrows with the last of the delicious strawberries when he fired his parting shot…

“I want water.”

Annnnnnd, welcome to my fragile X world…

(PS – I ignored him and he ate the damned waffles. *sigh*)

 

Perspective

Perspective

The always beautiful Chelsea.
The always beautiful Chelsea.

My dear, dear friend, Mrs. Rogers is a fan of perspective. Every International Conference that we attend, our third having just passed, provides me with boatloads of perspective. If there ever comes a day when I think that I know all there is to know about fragile X as a disorder, I won’t stop attending the conferences…if only for the perspective it provides.

I remember in the early panicked days after we received Caleb’s fragile X diagnosis  how desperately I searched for someone, anyone, who could tell me how to fix this…him…us. For many years, in fact, I read every article I could about the status of current research. I remember telling my husband in breathless tones, “They’ve reversed all of the symptoms in mice!” I remember the surges of hope that accompanied reading those articles, surges of hope that were all I had to keep me afloat in that sea of depression I had plunged into.

Somewhere along the line that hope turned to bitterness, though. “Who cares if they’re still curing mice?? What about my kid?” which then became despair, “He’s almost 8, it’s almost too late for him!”

When Caleb turned 8 without a cure and our lives didn’t implode, I took a deep breath and realized that we were going to be OK. It was a remarkable moment for me to realize that this is our life and I like it. I like the friends it has brought into my life, I like the strength it has put into my spine, I like the confidence it has given me in myself. This is my life, it’s his life…and we’re good.

The ever charming Glenn
The ever charming Glenn.

I’m not immune to the hope for “better.” I’m not content to just be where we are at. There are many ways our lives can improve and it’s my job as the “Money” to get us there but the feeling of desperation, the feeling that time is running out, is gone. It’s been replaced with the realization that we’ve only just begun…and we’re pretty freaking happy already.

As we were on our way home from Orange County, my husband asked me if I had attended enough sessions…if I felt that the trip had been worth the time & expense. I realized then that I hadn’t actually attended as many sessions as I had planned and I felt briefly let down…as if I had lost an important chance to learn the secret way to make our lives better. After further reflection however, I realized that what I needed was perspective and that was exactly what I got.

I sat in an audience watching several adults with fragile X talk about their lives, their happy lives…granted there are struggles but who among us doesn’t have those? I spent the hours I was not in sessions meeting and talking with my new friends Cem, Spencer, Tommy, Eric & some old friends Nick, Dillon, Chelsea, Kelley, Glenn, Alli, Josh…just to name a few…and it was those hours that I value above all else. Sure, I could have learned another method of managing Caleb’s anxiety, but instead I talked with the people who had learned to manage their OWN anxiety…living proof that what I want for Caleb is possible. Perspective.

My new hero, Tommy.
My new hero, Tommy.

Of the sessions I did attend, many things grabbed my attention and set my brain to working but none of them grabbed me the way one single quote did…it has wrapped itself around me like a warm blanket. One of the self advocates, Tommy, said…”never stop believing.” That was his advice to other self advocates and to the many parents desperate for his words of wisdom.

Never stop believing. I won’t. Thank you Tommy…and all the other self advocates who gave me fist bumps, high fives and even verbally smacked me down when I pushed too hard (oh, lord can those boys make you humble!)….thank you for showing me what is possible. It was worth every penny, every minute, every moment away from my own son…it was worth more than I can express.

Yes, and…

Yes, and…

I know I keep talking about that Leadership series (here, here, here, here, here, here and here) but it was life changing and I’m still adapting to my new outlook…so bear with me while I continue processing.

One of the activities we did during the series was the “Yes, and” vs the “No, but” game. We all stood in a circle, we were told that we were to pretend that we worked for the richest company and the richest person in the world and that the CEO wanted to reward all of the employees so we were going to brainstorm a reward.

The first round we were required to say no to whatever the person next to us offered and come up with an alternative. We started off big with week of vacation and ended 20 people later with lots of excuses and a plaque.

For round two we were instructed to say yes to whatever the person next to us offered and add to it. We started small with that stupid plaque we ended round 1 with and ended up with company cars, a company island, our own condos on the island, a company jet, weeks and weeks of vacation, and lots of money. Round 2 was SO much more fun.

We were encouraged to take this “yes, and” attitude out into the world as we plan for our kids’ lives. One small change in thinking can have an astounding effect on everything. Seriously, e.v.e.r.y.t.h.i.n.g! Next week I’m going to play the “yes, and” game again…no one else is aware of it yet but I’m determined that it’s the only acceptable outcome.

We have had some issues over the last few months with Caleb not getting access to recreational programs he deserves to be part of. We did a lot of angry e-mailing, there were lots of long phone calls to lots of different people, wayyyy too much of my time and wayyyyy too many missed opportunities for Caleb before we came to a one time accommodation. One time. All that work…all that time…all that stress for ONE field trip. If you want the longer version you can read it here: The same story told twice.

Pure LoveNext Tuesday there will be a meeting to discuss not only our issues but the issues other parents in the city have had in trying to do what we dared to do…ask that our kids be included like everyone else. Who would have thought that in 2014 that it would be a revolutionary idea, but there you have it. Wish me (and them) luck, please…it’s hard work changing the world! He’s so worth it though…

 

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.