Pushing the Fragile Limits

I knew it was going to be a rough summer. Toby turned three at the end of May and things changed. There was a big 'ol birthday party. Our OT/ST and play therapy routine changed. We had more end of the year activities for the big brothers. Toby rolled with it but we saw the arrival of a low hum/growl vocalization throughout the day. Input. Input. Input.  

We introduced potty training, because why not add some extra pressure into his spinning-out-of-control world?!

A week after Toby's birthday he had his annual check-up, a doc visit that included some vaccines. Poor kid, his leg, where he got the shots, got the biggest knot. It was a Friday appointment and he was run down and throwing up through the weekend.  

Then we put him through swim lessons.  Lots of anxiety throw up that week. (But we now have a fish!)

Then we had a few weeks of summer routine - shuttling brothers to activities, beach days and My Gym classes were staples. The hum went away. No throwing up. Aside from some poop/potty training grossness all was well.

Until the two-week roadtrip.

Let me say that again: TWO. WEEK. ROADTRIP. 

Here's what we did:

July 4th off to Tampa, spent one night.

July 5th off to Slidell, LA spent one night

July 6th off to Longview, TX. Shortly into our drive, we stopped in New Orleans for lunch and witnessed a mega, mondo, it's amazing someone didn't call CPS because we obviously couldn't control our child, meltdown from Toby. Also, that evening when we stopped into a Moe's for dinner, Toby ate dinner then promptly vomited it all up. I was gracious enough to catch pretty much all the throw-up in my hands. Oh, how things change. Gone are the days when I ran from the pull of fresh vomit on my gag reflex. Now I extend my hands to catch it. Motherhood ain't for the weak of stomach.

Being told no here (as in, no you may not touch this painting) was the beginning of the NOLA meltdown. (Meanwhile is that Blue in the background touching a painting?!?!)

We arrived pretty late that evening at our friend's house in Lake Cherokee and spent two nights there. The boys had a blast playing with their dog, jumping around on their boats, playing in the lake, catching a catfish...

Toby on the boat. He looks grumpy here, but he liked it. Promise.

Happy boy in the lake.

The boys loved our friend's lakehouse. They played hard. They had a blast all day Saturday, but then Toby had another excellent meltdown right before church Sunday (the 8th). This was as I was trying to make a salad for the after-church potluck and pack up the car because we were moving on again that night.

A wiped-out Toby fell asleep like this in his church class:

So I went in there and grabbed him and held him asleep on me through the potluck lunch. A bit of a bummer when it was my first time in our old church in 2.5 years but... the boy needed a shoulder and not a hard plastic slide.

Next up... two nights with the Thomas family. A pool and kitties made for a very happy Sunday afternoon/Monday morning for Toby. Then he melted again. He melted, I got him to take a nice two hour nap, and then he woke up and picked up right where he'd left off. I'd never seen anything like it before. We were supposed to go on a double date that night with the Thomas's to our favorite Longview restaurant and I worried it wasn't going to happen, but finally, in the early evening, he settled down.

The next day I took the boys to Tyler, TX to go to the Discovery Science Center. It was rough keeping Toby happy, but we were meeting some new Tyler friends there, so it was important to push him and at least try. Who and what we were doing there exactly is another story and really it's Bue's story, so I may or may not tell it here... but anyway, our group that day:

Then we continued on to the Mauldin's where we spent 5 nights. (The poor Mauldins!) They have a gorgeous house on a lake and a dog Toby loved, so it was a comfortable space, and Toby settled. In every house Toby and I had our own room and bed that we shared, and for the most part we/he slept well. He got into a rut where he was waking up at 5am but I put shows on my computer and kept him quiet until the rest of the house woke up.

Every day we met at a splash pad or park or friend's house. Every day an activity. Just like at home but new places, new faces. He was such a trooper. Some anxiety throw up, more fussiness, but overall he did so well.

On the Mauldin's lake.

Then one night in Birmingham, AL to pick up a nephew and a niece.

Then, with a 5-kid-full van back to Tampa to dump 4 kids, and spend one more night before coming home with just Toby.

Oy! Why did we do all that exactly?

Here's Why We Did It:
As a missionary pilot, Kevin's salary is 100% self-raised support. Imagine being hired by a non-profit on the condition that you first raised enough grant money to cover your new position. Kinda like that. MFI, as non profit, raises money for the planes, facilities, and some staff costs (paid office staff, everyone's healthcare etc,), but the salaries of the pilot/mechanics are raised by the pilots/mechanics. Kevin was accepted by MFI in October 2009, but he didn't start working for them until August 2010. From October through Decemebr of 2009 we were wrapping up life in Longview (completing Blue's adoption!) and Kevin was still flight instructing. Beginning in January 2010, until he started in August, he was driving around visiting with people about supporting him in his new ministry position. Supporters send their money to MFI, and MFI cuts Kevin's check based upon what has come in. Every other year Kevin gets two extra weeks for "deputation," as in time to visit with supporters, to remind them what their supporting. Our church in Texas and many of its members support us. It was awesome to reconnect with old friends, hear about their lives (the stuff that doesn't show up in facebook statuses!), and share updates on Kevin's ministry with MFI.

That's why we did it. That's why we'll be doing it again coming up because we have friends/supporters in North and South Carolina to visit as well.

Since we've been back Toby's had diarrhea. All week. He's had meltdowns every day. I've got a nice scratch on my jawline from one of 'em. He's had some terrible nights but the past two have been good. We've made it to My Gym class and the beach and had our usual fun too, so he's settling back down.

Just in time for Kevin and I to go out of town because of the International Fragile X Conference in Miami.

There is still no "normal" this summer!

But he'll be home, he'll have his brothers, he's used to my mom watching him overnight... and one of the days she's actually bringing the boys down to the conference, so he won't be away from us the whole length of the time. Even so... no routine, no groove. Every day seemingly something new.

No wonder we've seen an escalation in anxiety behaviors, but at the same time we've seen improvements in speech. He's correctly answering "where" questions more and more often and his vocabulary is increasing. The other day he correctly identified a plunger and I was floored as to how and why he knew that word! 

He's our Toby. A fragile X kid, born into a won't-slow-down family. In his own way he rolls with it, and sometimes he stresses me and sometimes he impresses me. Either way, we're making do. What other option is there? 

Comments

[Kate Cumiskey]

Hi Faydra. It is wonderful to read about your hectic, entrancing life with Toby. I had no idea you had a son with Fragile X. I'm an Autism specialist for the state of Florida, the only state which has Centers for Autism and Related Disabilities legislatively mandated through the department of education. I suggest you consider checking out our website at ucf-card.org, and keep an eye on our calendar. We offer trainings for parents (vetted through the state of course) and lots of them are online. They are free and simply require call-ahead registration. The online ones (obviously the option for you!) require you simply to be able to watch a live training on the computer and type questions if you want to. The reason I suggest this is, our potty primer is SUPER! It is an intense nearly two hour class, and if you miss pieces of it running around after Toby, you can sign up and take it again. Think about it. We are paid for by taxes, no charge for anything except our annual conference. If you do end up signing up for anything, just tell the students who sign you up you are currently living out of state but Kate C. recommended the training to you.
You are still a fabulous writer, and your blog is inspiring. I have a 19 year old with Asperger's. Take it from me, getting him out there is the best thing you can possibly do! Which it sounds as if you already know,
Blessings, Kate

[Jenny]

It was really great to get to see you all! I'm so thankful for the opportunity :)

We have some of the same problem with Andy. It's difficult for me to maintain a balance between providing the support of some structure in our lives while also getting out enough to provide a variety of stimulation and new experiences. Plus, it's stressful for me, b'c sometimes it means dealing with unhappy, screaming toddler, which is really hard on me (seriously, one of the hardest things for me to deal with).

Btw, was that a rhetorical question?

[Tammy]

Faydra, I am inspired by your courage and love. Toby is so lucky. Love you guys!!!