I scared.

I recently had the pleasure of visiting Target. Actually 2 Targets for a combined 3 visits in a single day which was a personal record TYVM. Target is one of Caleb’s favorite places to go too. Every day I wake up and he will ask me, “Go to Target? Buy baby food for little dude?” Obviously, I can’t say yes every day but I try to say yes at least once a week…hey…little dude eats the heck out of that baby food!

This day, was one of the “yes” days. Caleb and I got showered (of course, it’s Target not Walmart, sheesh), dressed and set out. He was so happy. He was going to Target to buy baby food! Good times were coming.

When I parked the car, he bounced right out of his seat and called, “You comin’ babe? Come on, Mommy, let’s go!” before I even got my seat belt off. He was vibrating with joy. His little gigantic, man sized hands were fluttering…there was so much excitement and anticipation flooding through him it was just spilling out of him in quick little flicks of his wrists. I can’t help but smile at him when he’s like this and I’m always rewarded with a joyous smile in return. This is what pure, uninhibited joy looks like.

We went in, grabbed a cart and I tried to steer us toward the Spot section. Caleb was having none of it. “Come on, Mommy, check baby food!” I was able to get a slow stroll going on, they had had these adorable concrete hanging pots there the last time and I needed 1 more to join the 3 I had already snagged…but they were gone *sigh*. Caleb kept a steadying hand on the cart to make sure I didn’t just start wandering around like a kid in a candy store (or a Mommy in a Target store.) I said recently that he will soon be more mature than me…HA!…in a Target store he’s been more mature than me for years.

Anyway, he kept us on target at Target (man, I crack me up.) He guided us to the baby food aisle, which just happens to be across from the Men’s hoodie section at this particular store which ups the OMFG excitement level for him by a factor of 10, easily. The boy, loves his hoodies.

He parked me in front of the Stage 3 Gerbers, waited until I had whipped out my pictures of the current stock at home (I was wayyyyy too lazy to make an actual list) before he left me to my task so he could check out the current hoodie stock. Don’t worry, he stays close enough to keep an eye on me at all times so I’m in no danger of getting lost.

I pulled the right number of the right types of food off the shelves and he came over to help me put it all in the carriage. He put one back because one of them didn’t fit in his pattern (2 rows of 7) but I showed him how to get a new pattern (3 rows of 5) so I was allowed to put the rejected food back into the cart. Yay!

So we leave the aisle, I wanted to see if they had that cute little planter in the back of the store where the outdoor living stuff is kept and he was down with that now that we had established that his little brother wasn’t going to starve. As we walked toward that section, the lights suddenly cut out. A couple people yelled “Hey!” and Caleb grabbed my wrist. Hard. We stopped moving, there are no windows in Target and we were in the very back of the store…we couldn’t see until our eyes adjusted. After about 10 seconds, the lights popped back on and we continued.

During the brief outage I was just chatting at Caleb. “It’s all good dude. The lights will come back on. Let’s just wait a second and…” pop! There was light. “See, it’s all good. We’re fine. We’re good. Let’s go find Mommy’s plant pot.”

And we walked on. After about 30 seconds though…the fire alarm started blaring and flashing. Caleb was already on edge and this was too damn much. He covered his ears and started telling the alarm to “Shut up! It’s enough!” and people around us did what all normal people do when a fire alarm sounds…they kept shopping. I looked down the aisle beside us and established that there were, in fact, no more cute little concrete planters. Of COURSE I couldn’t just leave without looking, right?

Then Caleb and I started moving toward the front of the store. Suddenly, there were employees coming from every direction, directing everyone to the front of the store. They looked stressed, I started to get stressed. Caleb was already through “stresssed” and hovering just below “losing his sh*t.”

I started up the calming talk, keeping my voice steady. “It’s alright dude, we are just going to the front of the store. It’s like a fire drill at school, we just need to go out the front door.” We were in sight of the cash registers when an employee helpfully corrected me, “No, this is real.” “Wait, really, asshole?” was conveyed very effectively in a glare (dude is really, really lucky I haven’t figured out how to breathe fire yet.) and he slid sideways and sped up to get away from me.

It was too late. I had to park the cart so I had my hands to corral Caleb and get him moving again. He started slapping the back of his hand, saying “Ow, that really hurt!” and “Sorry.” before doing it again…and again…and again. I had managed to get him two aisles further along when he looked at me and said. “I scared.”

It was like getting punched in the gut. I was looking directly into the eyes of this man-child of mine and I could see his fear. I was scared too. Not because I thought we were in any danger from a fire. There was no smoke, not even a whiff of smoke…I could see the front doors…but I couldn’t get to them. He was frozen. He didn’t want to leave the baby food, we had come for the baby food. He didn’t want to walk through the crowd of employees at the doors to get outside. He didn’t want to listen to or see that awful damn fire alarm either…but the fear of what was between us and those doors was greater than the fear of that alarm all around us.

I was scared too because there was not any possible way I could make him move if he didn’t want to. Every line of his body told me he was right on the edge of flight and if I tried to prevent it, he was going to fight. I was scared that employees who were watching us would try to “help” and send him running the wrong way. I was scared they’d send in police or security to force him out. I was scared I was going to have to physically put myself between him and whatever came at us next because there was no one and nothing that was going to touch my child. I would have burned the place down with the force of a fire-breathing dragon. I could feel the power in me to do so.

Instead, I retraced the few steps to the cart and put it in front of him. “Push the cart, dude. Hands on the cart. Right to the register.”

“Check out?”

“We can’t check out, everyone is outside. We’ll just push the cart to the registers.”

“Check out, right now!” he wasn’t happy, at all but he started pushing the cart toward the registers and the doors. I was able to get a breath and forced my shoulders down and my face to relax into a smile. I smiled and waved off the employee who wanted to take the cart.

“We’ll leave it right over there!” He smiled back and stepped away.

We pushed the cart until we were right across from the doors. The crowd was now behind us. Caleb protested about leaving the food behind but he was no longer frozen. He was watching me like a hawk, so I kept those shoulders down and my face relaxed.

“Let’s go sit in the car.”

We sat in the car, my hands began shaking…my whole body began shaking…as a response to the adrenaline. I looked at Caleb and saw the possibility of tears. I started the car and looked at him. “Do you want to go home?”

“No, different Target. Need baby food.”

My man-child…I’m not sure I’ve ever been more proud of him. This had been bad, sure it could have been worse but it was bad and was only just saved from being a meltdown situation for one or both of us by the slimmest of margins. We could still see the flashing alarm and now hear a fire truck siren coming…but he was already ready to try again.

You ever want to meet a fucking superhero…let me introduce you to my kid. You ever want to meet a fucking dragon…just try to touch him.




What I did on my family vacation.

Ugh. I have no idea how to share this without sounding like a school report! Last week, we were all on vacation. We rented a frickin’ RV against our better judgement and drove to Florida to visit my mom, dad & sister.

We decided to drive because we could not IMAGINE taking the little dude on an airplane and anyone surviving. I’m fairly sure after a few minutes of his highest pitched screaming the pilot would have just crashed the plane to put everyone out of their misery. He is THAT LOUD when he’s mad. And lots of things make him mad…dirty diapers (just imagine changing a 40 lb, 5 year old’s diaper on a plane??), being hungry, being tired, being bored, being stressed, not being able to hear his iPad (and he will NOT wear headphones…yet)…OY. It was a nightmare to consider. And, it would have cost a small fortune.

Driving in our Pilot was considered briefly but the little guy eats every 2-3 hours. We’d need to stop for that to happen and Caleb eats C.O.N.S.T.A.N.T.L.Y. He is almost 13 (please pray for our food budget for the next 5 years.) Plus we wanted to take the dog since my parents consider him one of the grandkids. Our max driving time in the Pilot is a 5 hour trip to my parent’s camp, it take 7-8 hours. At that rate, we would have arrived in Florida and had to turn right back around to start for home.

So, the RV made sense. We didn’t need to stop for every meal. There are seat belts at the table and couch so I could move the kids around as needed to ward off boredom (also, we let Caleb sit in front sometimes…it wasn’t strictly legal in every state we passed through but…seriously…he’s bigger than some adults (like my mom & MIL) and they’re allowed…so…yeah. Spoiler alert – he lived) bathroom breaks were MUCH more pleasant since they could happen as needed and NOT in public restrooms or on the side of the road and if anyone needed to get out to get a break from the screaming it wouldn’t involved a 20,000 foot descent into madness. We could just pull over. This let us stretch our driving time significantly.

Why then did it feel so ill advised? Because it was new and if you live with fragile X you know that new is not good. New can often be very, very bad. New can mean anxiety, tantrums & meltdowns. We know that doing something new well means lots and lots of preparation and practicing it in workable segments. It means building up to the entire experience. That was not happening here. We were picking up the RV, packing it and leaving. The kids had 12 whole hours to get used to it before we left and they chose to spend a good chunk of that time sleeping (bless their little hearts because Eric and I had tons to do.)

The little dude has also had a LOT of changes in his life. Sudden and traumatic changes. We had a social story and we shared it with him, we reassured him over and over that we were all going to go back home after but I’m really not sure how much he understood. Worse, I’m not sure how much of that he believed. Looking at his life, from his perspective, you can see how maybe adults aren’t really all that trustworthy. Taking him from the house where we promised we would live for a long, long time could have gone pretty badly. At least this way we could have turned around if necessary.

When it was all said and done, it turned out to be the very best choice we could have made. Having the RV provided all the benefits we were expecting, plus it allowed the boys to have a consistent place to sleep or decompress regardless of where we were. On the last day of our return trip, after driving over 3,000 miles in 10 days, we were all done. We were ready to be home, we were ready to be more than 30 feet from each other at all times…but we were also a little sad. It was the best time and being in an RV felt like it opened up the entire country to our family. We could go anywhere.

As we drove back to the dealer to drop off the RV, Caleb told me that Daddy needed to run into Target and buy an RV…his alternate was to order one from Amazon. I haven’t checked Amazon yet but I wouldn’t be surprised if he was right…I wonder if they’re Prime eligible…

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…


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.



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!


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?


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*)