Author: Melissa

Grampy Travers

Grampy Travers

Melissa

It’s been more than a month since Grampy passed. The house feels so empty without him…and I can’t seem to write anything else while this is here in my draft folder. Caleb talks about him every single day.

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About 10 1/2 years ago, Eric and I moved in together…into a two family home owned and occupied by his grandfather. I really wasn’t sure how I felt about Eric’s grandfather living downstairs. I’m not a big people person. I’m a little bit…OK, maybe a lot…anxious and I value my privacy. I had visions of his grandfather, who insisted on calling me Matilda, wandering in and out as he pleased. Also, he wasn’t excited that I had two dogs…if he didn’t like dogs. He was not going to be my kind of people.

We managed to settle into a comfortable routine, however. We had our lives and he had his. We lived upstairs from him but could go days without seeing him, we were all busy. He was there but not there too much, I hope he felt the same about us. We tried to be useful and respectful, it had been his home for a long time and we didn’t want to invade it.

We continued this way up until a couple years ago then, gradually, Grampy needed more and more help. We’d clean his car off after a storm and we took over getting the trash out, landscaping (except for mowing…the lawn guy kept that chore!) and any maintenance projects Eric felt comfortable tackling. It was a subtle shift and we said over and over again how glad we were to be here to do these things for him.

In the past year, however, Grampy grew to depend on Eric, in particular, more and more. He took over driving Grampy to his appointments, grocery shopping and eventually…after a near miss with the gas stove…the cooking. People began telling him how lucky he was to have us. Mostly he agreed, although losing your independence isn’t easy and there were times he resented the way things would go. We tried very hard to respect his wishes but we drew some hard lines on safety issues which, as his strength declined, became more frequent. Losing his license was particularly hard for him. I think until that moment he assumed he would regain what he’d lost. I still remember the hurt look on his face when he told me that the state had revoked his license. All he wanted was to be able to drive to church and to the grocery store, he really didn’t understand why that would be a problem.

Since May, we’ve been primarily responsible for him. He had outside services coming in but those just allowed us to cope with the extra responsibilities. It didn’t really relieve us of any of them. We were still tied to the house, we didn’t leave him alone for longer than a few hours at a time between meals. There were times we wanted to do things that we couldn’t because Grampy needed the care. We never resented Grampy, though. We felt honored to be able to help him, to be able to pay him back for the support he’d given his family over the years. Plus, he just called out to something very maternal/paternal in us…he needed us and we needed to do for him.

People have a lot of different opinions of Grampy…we all had our own experiences with him…but I think I was the luckiest of all. I had nothing but images of him as a kindly old man, hardly bigger than an elf. Any time I described him it was as “this little, old Portuguese man…he’s SO cute!” Any temper he had when he was younger, and I’ve heard he had one, was largely gone. He always had a smile for me and he dearly loved Caleb. I don’t remember when it happened but at some point over the years Grampy began calling me “Meliss” instead of “Matilda” and, it turned out, I kind of missed it.

He also tolerated my dogs right up until we brought our new puppy, Tucker, home. Then Grampy decided he was a dog person after all. He just loved Tucker. As anyone who has met him knows, Tucker is not exactly falling over himself to make friends but he loved Grampy and would sneak down the stairs to visit as often as he could. He still sneaks down the stairs regularly. It turns out, Grampy truly was my kind of people.

I loved hearing his stories about growing up in East Cambridge, about his wife who I’d never had a chance to meet and his military experience. You could have knocked me over with a feather when he told me he was a Marine and fought in the Pacific during WW II. He had the most devilish look on his face when he told me that he was a “bad boy” back then and was sent to the Marines from the Navy as a result. I wish I had asked him what he did.  During the war he was a medic…just think for a second about the things he had to have seen when he was barely out of his teens. Then he brought his Purple Heart home, got married, bought a house, cared for his mother, raised a daughter and worked until retirement age for the US Postal Service.

These past few weeks have been incredibly hard on us but no matter how hard it got we never forgot that we were blessed to be able to care for him the way a war hero and family man deserved. We were blessed to love and be loved by him in life and we were blessed to be able to bear witness to his passing.

We know he was tired and long past ready to see his Helen again. At one point, last Monday night, when he was restless and waking off and on, I bent over him so he could see he wasn’t alone. His gaze flickered away from my face to a point over my shoulder and the smallest smile passed over his face. I can’t know for sure who or what he was seeing, but I have my suspicions and that’s what makes it a little more bearable to let him go…knowing that someone who loved him so completely was waiting.

Grampy,

We miss you more than we thought possible. Caleb has been wandering around your apartment talking to you, “Easy Grampy! Slowly…” I hope you can see the love he had for you in his need to be like you, even if that means using your walker. I’ll be sure to turn on a few Bruins games for him and tell him his Grampy used to play hockey, and won more than one fight against the big kids on the ice.

Godspeed, Grampy. We love you.

PS – Eric found the begonia identification tags you kept…we’ll do our very best to find the right ones for you and Helen in the spring.

Being accountable.

Being accountable.

Melissa

I thought that by sharing my new school year resolutions, I would be more accountable and more likely to stick to them…let’s see…

Bedtime – Caleb has one and, now, so do I. I need to get at least 6-7 hours of sleep and I need to get up at 5:45/6:00. I need the sleep to recharge, to keep my temper in check, to get moving on-time in the morning.

B+: I’m doing MUCH better at getting enough sleep but there are still some nights when I simply stay up too late. Based on an article I read recently, 8 Habits of Extremely Well-Rested People, I’m going to work on a consistent wake up time too. I don’t need to be extremely well-rested…just mostly well-rested. Eric is going to hate this because I’ll get bored if I’m up too long…his honey do list is going to get rather long, I think.

Mornings – We are going to get Caleb to school before the first bell every morning (we had been shooting for 2nd bell). We’ve built in a half hour buffer in the morning. We are 2 for 2 so far. He transitions into the school better when he’s part of the mob that rushes the doors at the start of each day. If it’s a super anxious day and he can’t handle the crowd, we will be there early enough to skip it.

F: Since the first week of school we’ve been hitting 2nd bell…mostly…we’ve been late to school too. Boo. I really, really want to improve this area. Team Welin must discuss this one!

Evenings – We will be starting up homework again. Unlike most families, for us homework is optional. That is probably the one thing that I admit typical parents should feel totally jealous of, we don’t have to have homework battles. We choose to. Errr…put that way it doesn’t seem very smart. Anyway, we got a list of what the 3rd graders will have for homework (reading, every night…) and we have requested the same for Caleb…ours would need to be modified. I’m thinking some of him reading to us and some of us reading to him.

D: We have reading and sight words Monday-Thursday. Sometimes we do the sight words in the car on the way to school. Sometimes we skip it entirely. We definitely need to get better here, he’s definitely more receptive to it.

Organization – I have some ideas on how to be better organized to help manage Caleb’s anxiety and for him to gain some additional independence in the mornings in particular. I need to be organized in order to create opportunities for success for myself because I’m tired of failing at life. That requires that I get it together…so that is what I shall do.

B: I feel more organized, I have a better handle on Caleb’s days…I know what he’s eating, what specials he has, what therapies he has and of course I have the note home so I know exactly what he worked on that day. We talk about all of the the night before and in the morning. His anxiety around going to school at this point is pretty close to zero. I’m not giving myself an A yet because there’s still more I want to get done! And I did put his Under Armor shirt on backwards one day last week and his teacher had to fix it. Oops.

I’m a little bummed at this, I thought I’d been doing better. We have been struggling to get our feet back under us after losing Grampy. The next two weekends we’re traveling for fragile X events, getting in some time with other parents…some time out of our normal routine…will help, I hope.

 

Two perspectives.

Two perspectives.

Melissa

Yesterday, Caleb’s teacher shared some photos with us of Caleb enjoying science class at school. Eric brought his phone to me, started the slideshow and my initial smile turned to sobs…mascara running down my face…can’t catch my breath…ache in my chest…sobs. He was absolutely mystified with my reaction because the photos…here look…

The photos are awesome.


Look at that face!


The concentration!


The head bent over his work!


The smile for his teacher! Pure and total awesomeness, right?

Eric was immediately just so P.R.O.U.D. of him, of how hard he works, of how far he has come, of how much he is teaching us all about what is inside of him.

But what I saw in those photos was what we have lost. What he has lost. What I saw was the little boy he could and should have been if only I hadn’t passed the wrong X to him. I saw a long life of him trying hard, harder than anyone should have to try, and still falling short of his peers. He doesn’t seem aware of it now, but I know he will be in the not too distant future. He’s very, very socially aware. He loves to do what the other kids are doing. One of these days…he’s going to know…and that’s what broke my heart. It will always break my heart.

I wouldn’t give up a single curl on that head for any amount of money in the world…and I still hate what fragile X has done to him. Seven and a half years post diagnosis and I want to be done with it. Done with all of it. I want to not even know fragile X exists. That is a pretty good explanation for being so quiet here, I suppose.

Early morning experiments.

Early morning experiments.

Melissa

We have already had a busy morning of learning! What have we learned?

  1. If you use too much cooking spray on the griddle when pretending to warm your pizza, it will make the crust soggy and gross.
  2. How much cooking spray is too much? Somewhere between ANY (Money’s opinion) and most of a can (Caleb’s experience.) This range will hopefully be sufficient making further experiments unnecessary. Hopefully.
  3. Cooking spray does not make a good surface cleaner.
  4. Cooking spray does not make a good window cleaner.
  5. Cooking spray DOES make a huge f*cking mess. (I already suspected but some things Caleb just needs to learn himself.)

We have one final experiment still ongoing. How much Excedrin Migraine will Money require to make it through today? Results to follow.

Back to school for Caleb means…back to school for us, too.

Back to school for Caleb means…back to school for us, too.

Melissa

This morning, Eric and I spoke to the 3rd grade at Caleb’s school about fragile X and Caleb. We did this last October but we wanted to get in there early this year so, one week in, and we’re done. Caleb’s teacher and the other inclusion teachers were all very excited that we were coming in to do the talk.

The kids got excited when I pulled this out…

It’s hard to go wrong with a light saber as far as 3rd graders are concerned!

Before I get into the details, I want to give proper credit here…we do this because Holly Roos convinced us that it was important and because she gave us all the tools that we needed. She has, for years, shared ideas and advice on how to do this and I’m so very glad we took on the challenge. I strongly recommend checking out Talking with Students About Fragile X Syndrome. She shares her Powerpoint slides from the presentations she’s given on the topic and there is a podcast.

A couple people asked last year about what we said and I shared very generally (Dialing it down a notch) because you really do have to customize this to fit your child and your situation. I’m sharing the entire “script” I wrote out this year with commentary to perhaps spark your imagination if you’re stuck. I had NO idea what we were going to say until Monday night and this was all written last night. I am procrastinator…hear me roar.

This is color coded and printed on note cards which we carried with us. Blue is Eric, Pink is me and Purple is the free for all where we both chimed in. Anything in black is either commentary or what the kids suggested/added.

Introduce ourselves, some of you might remember that we came in last year…who here remembers? Who remembers what we talked about? (Caleb, fragile X.) This year, we are going to talk about something a little different. We want to talk about…THIS light saber! (The reaction to the light saber was awesome, there were gasps and cheers!)

This light saber is pretty cool, do one of you want to come try it? Isn’t it cool how it lights up? Shake it hard…isn’t it cool how it changes color? (We didn’t invite anyone to come up, it was too crowded, I demonstrated it to more gasps and laughter…be flexible and just go with it!) I want you to take a minute to think, what kind of game would you play with it? What would you pretend? Don’t call out the answer, just keep it in your head and remember it, OK?

Now, what if…we take the batteries out? What happens? No lights, no sound. Remember what you were going to pretend with it a few minutes ago? Could you still play that game with it? Probably, right? It might be a little different…it would surely be more quiet which I’m sure your teachers would like (more giggles)…but it would STILL be fun, right? (One kid looked a little devastated to consider the loss of batteries, which almost made me laugh.)

This light saber, with all the lights flashing and fun noises, is like you guys. You don’t have fragile X. Your brains and your bodies all work together to turn you guys into pretty awesome, fun kids. Caleb is like the light saber too, but he DOES have fragile X so sometimes his brain and his body don’t work together exactly the same way…so he’s kinda like the light saber without batteries. But he’s still pretty awesome and he’s still fun to play with.

What is fragile X, what does it mean? We get asked this a LOT by grown-ups…most people have never even heard of it. Fragile X is a genetic disorder, do you know what that means? Genetic? We are ALL made up of lots and lots of genes. They decide what color your eyes are, what color your hair is, how tall you will grow…all sorts of things. If something is genetic it means it’s passed in your genes. And we can’t pick our genes…whatever is in those genes is what we get…we can’t just decide to be taller or shorter, can we? Caleb didn’t choose to have fragile X…it’s just how he was born. It also means that you guys can’t get fragile X. You can’t catch it like a cold and you won’t ever wake up with it, OK?

So we are all lots and lots of genes and fragile X is one of those genes. It’s a gene that every single one of us has. Most of you are like Eric, you have between 5 and 45 repeats of that gene…which is just perfect and that gene does what it’s supposed to do…it makes a protein that makes your bodies and your brains work just right.

SOME of us have more repeats of the gene. I have…110! That means I’m a “carrier” of fragile X. My gene still works mostly right and it makes that protein. If you all look up at the ceiling, then look back at me…it just feels normal, right? Maybe just a little silly? If I do that…I get dizzy. It makes me feel like the floor tilted under my feet. It’s called vertigo, and I have it because I am a carrier. My brain only works mostly right. (I’m pretty sure this is Eric’s favorite line in the entire presentation.)

Then there are some people, like Caleb, who have even MORE repeats. Caleb has…does anyone want to guess? (after a few low guesses someone jumped straight to 1,000…which made me think, “Well, that escalated quickly!”) He has between 800 and 1,000 repeats. If you have more than 200 that gene stops working, so Caleb’s gene…it doesn’t make that protein that his brain and body need to work just right. He has fragile X syndrome.

So let’s talk about what that means for Caleb. We did this last year too but I bet it will be a little different because you guys have grown up and changed in the last year. So has Caleb.

Let’s list things you like to do at home (basketball, homework, art & music, hockey, origami, golf/sports, TV, play with friends, go to the park, go to the pool/beach…origami TWO kids said this, the teacher was just as surprised as we were.) Awesome.

Let’s list things you like about school. (math, art & music, gym, recess, lunch, science, writing, reading) Wow that’s a pretty cool list…I’m seeing some new stuff on here!

Now, let’s talk about this stuff…do you think Caleb likes all this stuff? No, probably not all of it because everyone likes different things, right. Do you think he’d like (Go through the lists, deciding if he’d like it or not and why he might not.)

You know what I’m seeing here? I’m seeing that he’s a lot like you! (Actually one of the kids noticed this and SAID IT FOR US! I could have cried!)

But there ARE things that he does that are different, right? Let’s list some of those…let me start! Let’s look at this light saber again. Do you think Caleb likes this? He’s actually a little bit scared of it because it is SO LOUD! One of the things that’s different about him is that he doesn’t like loud sounds. He has like super-powered hearing and loud things like this…they are scary. So let me fix this while you talk. (I sat down and stuffed cotton balls in the end to dampen the sound while E wrote out the next list.)

Let’s list some of the things about Caleb that are different (He covers his ears with his hands, calm body (lack of), plays by himself (it was declared when we got to this point that he DOES NOT play by himself, he plays with other kids now), makes funny noises, flapping his hands…we tried to  suggest ways they could help. Eric, very brilliantly, asked them to flap their hands and describe how it felt. We talked about the fact that Caleb likes that feeling, several kids liked it too, lol. This was the LONGEST part of the presentation; once the kids got started they asked tons of questions. One girl asked about the dentist, another asked if he gets stuck on words like he gets stuck with song lyrics in his head, lol)

You know what, we had a really long list of ways he’s like you but only a few ways he’s different, don’t we? He’s a lot more like you than he is different! Isn’t he? It’s OK to notice that he does things that are different. If you ever wonder why he does something the way he does, it’s OK to ask a teacher about it or you can ask us. So while it’s ok to notice and to ask, I sure notice sometimes! It’s not EVER OK to make fun of him, it’s not OK to make fun of anyone who does things differently…OK? (One of the kids asked here if Caleb gets mad when other kids make fun of him, I pointed out that he has feelings just like everyone and it would hurt his feelings just the same way. Then I asked the kids if they’d ever seen Caleb mad? Nope. I pointed out that Caleb is a pretty happy kid and likes to laugh, he doesn’t get mad very often. And he doesn’t, thank goodness he’s more like Eric here!)

We heard from your teachers last year that you guys did a GREAT job at learning and at being friends with Caleb and we want to thank you for that…and we really want you to keep up the great work. I’ve noticed that he’s changed in the last year, he’s learning new things all the time and a lot of that is because of you. So I want you to pay attention to your teachers, work hard and make good choices because he’s watching you and learning and we want him to make good choices too (I threw the “good choices” in based on some discussion prior to our talk between the teacher and a couple students who apparently haven’t made very good choices in friends in the past and had to be separated this year. It’s a very good point to make and I’m glad I was reminded of it.)

Now, I want to talk about this light saber ONE more time. Two of you here know where Caleb got this…where did he get it? At the circus. Last year Peter and Jesus Enrique went to the circus with Caleb for his birthday. It was the FIRST time Caleb was able to go and sit through a circus like other kids when they didn’t lower the sound or make the lights less flashy. He didn’t do it exactly the same, did he? He had to use his iPad a lot…but he did it! And he talks about going back all the time. He never could have done that without Peter and Jesus Enrique there to help him. His friends, you guys, make ALL the difference in the world.

I pushed the button on the light saber again to demonstrate how quiet it was now. Do you think Caleb likes it now? (Lots of nods.) Yep, it’s a lot quieter…can you hear it? (A girl in the back shook her head.)

We then thanked them and started to say good-bye when one of the boys said, “Are you going to leave it that way?? With the cotton?” Ha! Yep, because it’s just the way Caleb likes it.

After we left the room we stopped outside the door out of sight and listened to the teacher take back over. She talked about how Caleb is still getting used to her so it’s hard for him to talk to her. She said this is where they could be helpful, because Caleb knows them already. *AWESOME*

This was just too much fun. It took about 45 minutes, with the biggest piece of that being the question and answers part. I was a little nervous before but once we got going it was pretty easy…and it was really, really fun to hear how the kids see him. They really do understand him and like him.

Now it’s your turn! If you’ve ever done this, I know a lot of you have, I’d love to hear what you shared…we do need to do this again next year!

It’s a new year.

It’s a new year.

Melissa

On Tuesday, Caleb went back to school. This always seems to me to be the logical start of a “new year” rather than January 1st. After all, our lives will be measured in school days for at least another decade, right? So because of that and because of some conversations with my BFF, I’ve decided to make some new year resolutions. It’s time to begin again.

I said back in June, “There is so much room for hope based on what we and other families saw. I need to rebuild that hope within myself right now.” (Balancing Hope)

It turns out that hope doesn’t rebuild itself, I have to do the work. *Booooooooo!* And the only idea I have at the moment is “fake it until you make it.”

I’m going to try to get back to focusing on the positive in our lives again. I’m going to try to get back to being the mom I was before all of this…the one that had to plan weekends and stick to it, the one who would tell her anxious, little boy over and over and over and over what was coming next. The mom who would model deep breathing when his  behavior began escalating rather than snap at him to “get it together.” (P.S. – That isn’t effective, I would not recommend trying it near anything breakable if you decide to test it out on your own child.)

I did all this once, not very long ago either. I can do it again. I just need to stop stomping my feet and screaming over how unfair it is (see how easy it is to slip back to the negative? Redirecting quickly!)

Resolutions!

Bedtime – Caleb has one and, now, so do I. I need to get at least 6-7 hours of sleep and I need to get up at 5:45/6:00. I need the sleep to recharge, to keep my temper in check, to get moving on-time in the morning.

Mornings – We are going to get Caleb to school before the first bell every morning (we had been shooting for 2nd bell). We’ve built in a half hour buffer in the morning. We are 2 for 2 so far. He transitions into the school better when he’s part of the mob that rushes the doors at the start of each day. If it’s a super anxious day and he can’t handle the crowd, we will be there early enough to skip it.

Evenings – We will be starting up homework again. Unlike most families, for us homework is optional. That is probably the one thing that I admit typical parents should feel totally jealous of, we don’t have to have homework battles. We choose to. Errr…put that way it doesn’t seem very smart. Anyway, we got a list of what the 3rd graders will have for homework (reading, every night…) and we have requested the same for Caleb…ours would need to be modified. I’m thinking some of him reading to us and some of us reading to him.

Organization – I have some ideas on how to be better organized to help manage Caleb’s anxiety and for him to gain some additional independence in the mornings in particular. I need to be organized in order to create opportunities for success for myself because I’m tired of failing at life. That requires that I get it together…so that is what I shall do.

I’m excited, these are all things I have control over and I need to feel in control of at least part of my life again. As a bonus, these are things I can do to make him feel better too.

I love a good plan…now to follow it…eep.

What we haven’t lost.

What we haven’t lost.

Melissa

Since losing the STX209 we’ve lost a lot. We’ve lost the ability to spontaneously change our plans for the day, we’ve lost the ability to take Caleb to large gatherings, we’ve lost the ability to take Caleb confidently out into public period. His anxiety is…I have no words for it.

What kills me is that he appears, to the general public, bratty and he’s not. He’s a really, really good kid. He’s just scared of the world right now. I hate it. I hate the looks when he yells because we have to stand in the check out line, I hate the looks when he cannot sit quietly at a restaurant while we wait for our food, I hate the looks when he cannot try on a fucking backpack for school without tears. I hate all of it. The fear I see in him tears at my heart every single day.

But I don’t want to talk about all that, because it makes me cry…it makes my head and my heart hurt. What I want to talk about is what we haven’t lost…we haven’t lost Caleb. He hasn’t lost his words. He is constrained by the anxiety, we’ll deal with that, but he’s not locked in the fragile X box. He has more words now than he did a month ago, a week ago, and his language is more appropriate to the situation.

Last week we went to Target, we do a lot of that these days because it’s Caleb’s favorite store and, hey, it’s TARGET…Mommy likes it too. When we reached the check out…

Caleb: Hi!

Cashier: Hi! How are you?

Caleb: Good, yourself?

Cashier: I’m good, thank you.

Then he helped Eric finish paying for the random very important crap we’d bought. He had a conversation with a stranger! Wha?

Or this weekend when we went in the (surprise) Target dressing room trying desperately to find uniform shorts for the boy who has apparently SKIPPED size 10 pants and is borderline outgrowing size 12 (at least in the waist, his legs need to catch up!) Oy.

Caleb: This room, this one? (pointing at the very large handicapped dressing room)

Me: Sure.

Caleb: (Looking around) It’s a nice little room.

Me: (laughing) You like this room?

Caleb: It’s a nice totel (hotel) room!

(After trying on a pair of pants and 2 pairs of shorts that didn’t fit)

Caleb (to the woman collecting the numbers as I handed over all the clothes): Just can’t win.

Me: It sure feels like it, doesn’t it bud?

So he’s there, he’s with us and he’s keeping the words. That was our biggest fear and it was not realized. Now if we could just get the kid to leave the house willingly again, that would be super.

**I hope very much that this is the last of these posts. I’m tired of feeling bitter, angry and hopeless. I’m tired of feeling so very sad for him and for us. There is more to come, I know this. I want to be looking for it and not at what we’ve had to leave behind.**

 

 

Why? Why? WHYYYYYY?

Why? Why? WHYYYYYY?

Melissa

Caleb often uses scripts from scenes in TV shows and movies that he loves to express the emotion he is feeling.  It’s actually the only reliable way we have for knowing how he is feeling on the inside. I find it pretty amazing when he can identify the emotion and find just the right scene to express himself even though he lacks the words to communicate it.

This morning he experienced a tragedy and, since I’m an awful mother, I recorded the aftermath…

That is some pretty raw emotion…a deep emotional pain, isn’t it? Want to know what caused it?

He asked for Fruit Loops for breakfast and I got him a bowl of Fruit Loops for breakfast. Then I insisted he eat them when he decided, after the fact, that he really wanted yogurt, not Fruit Loops.

I promised yogurt after he finished the Fruit Loops to no avail. He went to his computer and pulled up this video to share his deep sadness over my total insensitivity to his pain. I laughed. Sorry but I found the reaction a little bit over the top.

And then…

Yep. SUCKER.