This isn’t the same BasicallyFX.

I’m guessing that’s not a shock to read given that I took a 2+ year blogging break and we added a child in that time. Things have happened in the last 2+ years that have been beyond words. It’s been brutal, it’s been transformative, it’s been amazing and awful and shocking (both good and bad) and I’m not even close to the person I once was. My marriage isn’t what it once was and my family sure as heck isn’t what it once was either.

I came here so many times, wanting to post something…anything…to break the silence, only to save the draft and walk away for a few months before trying again. I wanted to explain myself and my silence. There are so many things that you don’t know, even if you are Facebook friends with Eric and I, but it all feels too personal…too secret. Once you start keeping a secret, it takes on a life of it’s own. Our secret has silenced me. If I can’t be honest here, I can’t say anything at all.

We aren’t who you think we are. We are so much more and so much less. We are a mom and a dad. We are caretakers. We are protectors. We see our value in how we use our strength for the good of others. We are humans who tried to be superhuman. We failed. We failed each other, badly. We lost touch with each other even as we became more and more attuned to those around us. We gave the very best parts of us to our kids, our family, our friends and left nothing for each other.

Last year, we hit a breaking point. At any other moment in time we would have walked away from each other, it was that sudden and complete. I leaned hard on friends and family, some of whom thought (and still think, unfortunately) we’re nuts for not walking…but I looked at the two little boys who deserved so much better than having their lives turned inside out. We did the only thing that we felt we could. We went to therapy, even if it was just to prove that we’d done all we could.

We went in hurt and angry and betrayed. There were many things going on but the most damaging was a fundamental lack of trust in each other. There were things inside each of us we didn’t trust the other to value or understand. There were things inside each of us that we didn’t think the other was strong enough to handle. We had built a castle on a rotten foundation and then closed our eyes and crossed our fingers hoping that, if we didn’t watch, it wouldn’t fall…and it didn’t fall. It exploded. Completely and utterly…we stood in the wreckage looking at each other completely bewildered. Who was this person?

We have spent the last year working so unbelievably hard. We have confronted things in our hearts and minds that we had individually worked so hard to put behind us that we didn’t even acknowledge that they’d even happened. We’ve learned to speak each other’s language. We’ve learned to speak our own truths even when they’re unpleasant…especially when they’re unpleasant. We have done this all while protecting each other fiercely from the outside world. I am incredibly proud of who Eric has become and I’m equally proud of myself. I just needed to clear the air on all this before I move on because I was carrying a burden that was not mine. I was carrying the burden of the “perfect” marriage and “perfect” family. Those things, do not exist…at least not here. So, I’m putting it down. Eric & I are not perfect, far from it. We have hurt each other, neglected each other, we became virtual strangers to each other in every area outside of parenting.

We’ve always been honest about how hard and amazing that raising a child with special needs is…what was implied, by my ever sunny approach and our fierce commitment to our kids, was that it is easy to be married while raising a child with special needs and it’s not. At all. We struggle, a lot, but we won’t ever stop fighting for each other and for these boys.

How it all started.

One July day in 2015, I was at work. It was a busy day. I was working toward the close of a transaction that had been dragging on for over a year when I paused to take a breath and saw I had a new e-mail on our CSN account. That email is often the first way I hear from newly diagnosed families so I keep a close eye on it. This was an e-mail unlike anything I ever expected, however…

Hello,

My name is ******** ****** and I am a social worker for the Massachusetts Adoption Resource Exchange. We help children who are in Massachusetts foster care find families. Adoption from foster care is free, families actually receive a stipend and once the adoption is finalized they can apply for a post-adoption subsidy.

One of my children I recently started to recruit for is a 4 year old boy who is diagnosed with Fragile X syndrome as well as Autism. I was reaching out to your organization to see if you could assist me in helping to find a family for him. In the past I have written little profiles for children that organizations have been able to share in their newsletter, blog or on an email.

We also are having a special needs adoption party on August 9th at Ironstone Farm in North Andover from 11-1 pm that this child may attend (at the very least I will be there!). This event is open to the public and families are welcome to attend to learn about adoption from foster care and services that are available to our kids with special needs. You are welcome to share the fliers attached on social media or in a blog/email.

I am in the office today (I have a meeting until 2) and Thursday and Friday if you would like to discuss this more on the phone. I am also always accessible by email.

Thank you!
********

An hour and a half later, after a long and hesitant conversation with Eric, I responded.

Hi ********,

We will do whatever we can to assist. In fact, my husband and I have been discussing adoption to grow our family recently and might be interested ourselves. We had not been planning to focus on a special needs adoption but we are both interested in leaning more about him.

Regardless of our personal interest, we would like to share this with our network. We have a lot of contacts in the FX community and they’re spread across the country. Are there any geographic restrictions or is he available to be adopted across state lines?

Best regards,

Melissa Welin

I’ll skip over a few back and forth emails that can generally be summed up by “Really?” “Yeah, we’re kinda nuts…but totally serious…” By 3:15, we got this:

Hi Melissa,

Here is a not so little write up. We have lots more info on him that his adoption worker can share with a family if they are interested! We can’t share a picture quite yet as his birth mother’s rights haven’t been terminated but I asked his adoption worker for a picture so we could share it with families that are seriously considering him. Let me know what else you need! As I said families are welcome to come to the Ironstone event on August 9th if they would like to learn more about him and the process. Thanks!

Anthony is a delightful three year old Caucasian boy who has a diagnosis of Autism Spectrum Disorder, Fragile X, and global developmental delays. He has been diagnosed with a feeding issue and is being followed by a feeding team due to this diagnosis. Anthony has made significant gains in his progress since being placed in foster care and in his foster home. He has also made significant progress at school where he has become more comfortable with the staff and loves being around his peers. Anthony attends a partial day preschool and has an Individualized Educational Plan (IEP) through the local school system. He will also receive OT, PT and ABA services in the home.

Anthony received Early Intervention services for the past two years. He is described as a sweet boy who relies on those in his environment to interpret his rather subtle nonverbal cues to indicate preference or continuation of activity. Anthony’s articulation skills are severely compromised with extremely limited vowel and consonant repertoire. Anthony will need to continue to receive speech therapy to address his communication needs. He will benefit from a family that has a consistent structured approach to teaching him communication skills. He has done well using an iPad to communicate.

Anthony can have social anxiety and does well when he is with someone he is familiar with. He is much calmer in his home environment. With routine and familiarity his behavioral needs decrease and he becomes more comfortable. He is improving his walking skills and can walk around his foster home and up stairs with support. He likes toddler toys that light up and make noise. A future family will be able to work with his foster family to transition him into their home. They will need to learn his routine and work with his providers.

After reading the write up, I called Eric while he read it…and the prophetic words were spoken. “He sounds like our kid. Oh my God…he sounds like our kid!” At 3:30, I responded:

Hi ********,

We will share this with our families in MA in the next day or two, we are away from our computers today.

Based on what you’ve written about Anthony, my husband and I are most definitely interested in learning more about him. He actually sounds a lot like my son at that age though we did not have feeding issues and he was walking independently.

What would you recommend as a next step for us?

Within 2 days we had our first pictures of the little dude, 132 days later we were a licensed foster care family, and 23 days after that little dude moved in for good. It was a year and a half from that first e-mail to the finalization of our adoption. Since getting licensed alone can take that long, we may have broken some records.

The only reason that it worked is because we had teams of DCF social workers, on our side and his, doing everything they could to smooth the way for this, we had a foster mother who did everything she could to support this outcome and we had family & friends encouraging us and stepping up to help with the logistics involved.

I call the whole story magical…and it was the very best kind of magic…it’s the kind of magic people make happen for each other.

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…