Dinner with a "3C Kid"

I do know why we thought that going out to dinner at a real sit down restaurant was a good idea; I was bored.  You see, we spent all day Saturday at home cooped up in the house because the weather was rainy and miserable.  We did a ton; spent two hours on a game of Star Wars Monopoly, an hour building and playing GeoTrax, way too long watching TV and we had snacked on everything in the house -- so it wasn't like we hadn't done anything, but I was super bored.  Me.  I was bored.

So my hubby suggested we all go out to dinner and that we invite my parents to meet us.

We agreed on the Olive Garden, half way between our house and my parent's house, and off we went.

I was nervous.  I mean, we DON'T take the boys to restaurants all together.  Nick only eats peanut butter (really) and Matthew isn't much better (Matt doesn't even eat fast food except the occasional chicken nugget at McDonald's -- so this is a challenge).

Add to that it is 6pm at night when we decide this, and that Gabe is accustomed to eating at exactly 6pm (he is obsessed with food in the literal sense), so he would have to wait, most likely in a crowded restaurant, stay calm while I entertained Matthew to keep him in his seat.

I looked up the menu online and it said that the Olive Garden serves Pizza.  Sold.  Nick and Matt could at least order that -- whether or not they ate it is an entirely different story.

So, we were off to the Olive Garden.

And the challenges started in the over-crowded waiting room during our 20+ minute wait.

I had prepped all three with the iPhone app from Model Me Kids that shows the boy going to dinner and 'waiting calmly' for his food while driving there in the van (my hubby drove, I turned around backwards and played the app for them; didn't want you to think I was doing both).  They boys all nodded in agreement and when asked how they were supposed to wait, they echoed the short clip by saying "Calmly." 

While waiting for our table, we were given one of those buzzers -- that doesn't actually buzz -- but lights up when your table is ready. We were two feet from the reception desk, but nonetheless, we got the buzzer.

And Nick and Gabe could NOT take turns holding it.

They were insistent on keeping it (*cough* Gabe), and my mom and dad were doing an awesome job (as usual) making it into a game of sorts so that there weren't any meltdowns.

But Gabe was feeling inflexible on the matter.

At Nick's suggestion, I turned the buzzer over in Gabe's hand so the part that lights up would be visible, which didn't go well -- It was met with grunting and Gabe dropping to the ground in protest.

Meanwhile, I have solved the Matt wandering around problem by giving him my iPhone set to a list of YouTube videos on the new Misty Island Rescue Thomas the Tank Engine movie (yes, we have preordered the BluRay version and expect it in the mail on Tuesday).  Matt is happy and busy.

So, I suggest that Gabe join Matt on the floor watching the videos.  And he does.

Then he is getting antsy, and ready to eat.  It is late now -- probably 7:00pm and Gabe never does well when he is hungry.

Finally we make it to our table, and finally our order is taken.  Finally.

And aside from my husband hitting the server's tray and spilling red wine all over her white shirt, we didn't have many problems.  Nick and Matt didn't eat -- Nick saying there weren't enough pepperonis on the pizza, and Matt refusing to let the iPhone go in favor of the Thomas Videos.  We went with it:  After all, the goal wasn't to get them good nutrition, the goal was to get out of the house and avoid boredom.

We finished dinner, much to Gabriel's chagrin, as he would've preferred to EAT EAT EAT EAT EAT EAT EAT EAT EAT EAT all night long.  But his awful and mean mommy wouldn't let him.  Now, to be fair here, we did discus in the van previous to getting to dinner that the plan would be to "Order one meal and eat it."  Not order more food once his meal was gone just because we were at a restaurant and he felt he 'could'.  That created a meltdown at a breakfast restaurant a little less than a year ago when he finished his breakfast before everyone else, and I refused to order him a second one (no way we could wait until he was served and ate again).  Point being:  I know to prepare him for this.

After dinner we were playing a game - I put three things in a small pocket inside my purse, then give clues as to what they were while they guess.  The first round went spectacularly:  Costco Card, lipstick and Diet Pepsi bottle lid.  They guessed them all (my mom played too).

Round two, came down to stamps.  I had given an-all-too-obvious clue which led Nick to shoot his hand straight in the air and Gabe to blurt out "STAMPS!" 

I looked at Gabe and said, "You're Right!"

Then pointed at Nick, "Yes, Nick, go ahead."  I say, and he says, "It was my turn!" 

"Say your answer now." I say, and he yells, "Stamps!"

"You're right!"  I say.

But Gabe wasn't having it. 

"NO, I AM RIGHT!" He bellows.

"You can both be right." I say trying to diffuse the situation for both of them; I didn't want the two of them arguing in the restaurant and Nick is not likely to give up being right so easily.

Gabe grabbed his large plastic glass of water and squeezed it until the lid popped off.  Then threw it under the table.

I just let it happen.

Then he stood up, and screamed a loud, excruciatingly loud sound that permeated the entire room of diners and left me feeling exposed.

Jeff stood up quickly and said, "I'll take him to the van."

I grabbed Gabe by the arm, and led him around me and handed him off to my husband. Gabe was glaring this dirty mean look he has when he is just PISSED and I glanced up at Jeff and said, "He's not in trouble; let me get things picked up here and I'll be right there."

Jeff nodded and off they went.

I stayed and picked up the rest of the table; books, restaurant BINGO, trains, iPhones and of course, kids while chatting with my mom and Nick and finishing our 'What's in the purse game." 

I wasn't phased by Gabe's ordeal, not anything like I have been before, but instead I was sad.  I think Gabe is regressing.  I know that I am the first person to say "It isn't regression!", but this is a different kind of regression: This is regression over years.

And that moment in the Olive Garden before I got the boys organized enough to leave, and before I said the Thank Yous and Goodbyes to my parents, I started to take stock of the regressions I have really come to understand over the last two weeks Gabe has been home from summer school.

He is noticeably weaker.  Just two years ago, it was noticeable that Gabriel was very strong for his age.  Strong sense of balance, able to do 5 pull ups, strong at gymnastics, moving furniture, and more.  Not now.  Now he hates to even lift light things.  He can't pick up and move the kitchen chairs as he used to be able to (and now Nick can easily).  He can't do even a single pull up.  Maybe it is weight gain?  Or medicine?

He hates physical exercise.  It used to be that he was active.  Never hyper, but active. Now, all he wants to do is lay down.  Says he hates exercise, and complains when we go for a walk, or go outside to ride bikes (he rides for a while, then lays in the grass).  I would never say that Gabriel is lazy, he is very willing to be helpful, but he has lost any physical endurance he may have had.

He has lost play skills. I think this may be an attention issue, and I also think there is a huge part of this that is influenced by his Bipolar Disorder, but some of it may be just be a loss of play skills. I am telling you, as the day is long, Gabe cannot entertain himself. AT. ALL. Add to that, he doesn't seem to recreate any scenarios. Nick just comes up with something and goes for it. Gabe used to have endless ideas to express, and they have gone away. No longer do I have 'control of play' battles with them - Gabe has no ideas.


He has lost motor planning.  An example would be when we were cleaning the floors this week -- an activity that all of my kids literally LOVE (proprioception mixed with getting to squirt the chemicals on the floor makes for an irresistible sensory activity) -- but Gabe couldn't figure out how to do the cleaning. He didn't remember the process -- left to right, top to bottom -- that is required to actually get the floor clean.  I was so frustrated with him because at first I thought he was making up that he didn't know how.  But, turns out, he forgot.  (This could be to blame for him hating exercise, being weaker, and having no attention span, but who knows...).

He has lost language.  Or maybe it is just noticeable that he isn't progressing, yet keeps getting older and the expectation is that he should.  But, I swear, he is leaving off whole sounds in his words (like any word that ends in 'r' he will leave off the r sound: "Butta" instead of "Butter"), is not articulating as well as he has previously, and is still completely leaving out words of sentences.  I have talked to him about 'baby talk' and how we are all big kids at our house and we should intentionally say words correctly (some of this, I think, is that it is hard for him to express himself, so he tries to take a short cut).  But, he is definitely going back to private Speech Therapy this year.

I am not sure exactly what to do here or how to make this better.  But, like all families with kids that have complicated diagnosis, complex neurological conditions, and challenging behaviors (I have officially dubbed our kids "3C Kids"), it means more doctor's visits, therapy sessions and of course, Googling. 

But, until then, I have learned my lesson, the same lesson I learn every year, yet don't seem to actually grasp:  Don't take my "3C Kid" to a restaurant.

H

13 comments:

Adoption of Jane said...

The first part of your post made me laugh... and not in the hahahahaha way in the ohhhh man i can so relate. Although Fari isn't as old as Gabe he has the same tendencies. I'm at the stage with him where as soon as i walk into the restraunt, even if we have to wait for a table I tell them.. please bring him french fries... they NEVER LISTEN! So of course he is touching and in to everything and he fights back and forth with his brother. Seriously Hartley one time we had to break up a battle over Water.. WATER!!

The red wine on the shirt made me chuckle.

Now back to the seriousness at the end of the post. I get that. I understand that. I feel your frustration. Two steps forward.. one step backward. I feel for you. I don't know about you but this Summer thing threw Fari (Tafari) off big time. The schedule upset was not cool at all. I am really anxious to see if being back in school will make a difference.

Off Topic: He has just started Echolalia. So great to hear his voice. Albeit it was only a few times. But so scary its not "his words".

I'm back to blogging, summer was crazy.. will do an SPD post Wednesday.

Love to you and yours,
Jane & Tafari

Cassandra Sines said...

Hartley, I can so relate to you regarding the regression you have seen in your son. My son, Caleb, is 8. We've seen a lot of regression in his skills as well. He was diagnosed with bipolar at the age of 3 and has had two psychiatric hospitalizations. His last was last October and spanned three different hospitals. After that hospitalization he had a neuropsych evaluation performed. It was very intense and very detailed. With that came a diagnosis that we never even knew existed and are left wondering how far will this regression go and what does the future hold. Caleb has been diagnosed with Childhood Disintegrative Disorder, which is a very rare form of Autism. His IQ is 59 and he cannot even put his shoes on the right foot without being told which foot to put the correct shoe on. It was very frustrating for us too, because we thought Caleb was just playing us. However, that is not the case! I so wish it was!!!

Just wanted you to know that I feel your pain! If you want some more information, please feel to e-mail me.

lurahloo said...

Where can I find info on "3C"?

Anonymous said...

Hugs! It's so hard to have those realizations that something more is wrong. I hope the answers come quickly for you.

Cathy

Gavin Bollard said...

It's always good to try once in a while (but it takes months to work up the courage to try again). Eventually it will work (sporadically at first but wow... it improves ... really).

Usually though, if we want a good time, we make sure that the restaurant has a play area. I also suggest that you order and eat and don't call the kids back to the table until you're ready for the water to be spilt.

Hartley said...

@Jane -- I am glad you got a laugh -- because keeping our sense of humor through this is esesntial! LOL

@Cassandra -- I am so sorry to hear things aren't going well for your family. It sounds like that is a difficult diagnosis to process. I appreciate you sharing about it, as I have never heard of it. Hang in there Cassandra, we are all here for you! : )

@lurahoo -- I just made up 3C Kids! So, there isn't a lot out there -- but if you want to read about complicated kids, I highly recommend The Explosive Child by Dr. Ross Green. My fave!

@Cathy -- thanks for the comment Cathy! It is challenging, as you know, to constantly be trying to figure out what is going on with your child, truthfully, I doubt we'll ever have 'the' answer. But, we'll keep going!

@Gavin -- Thanks for the tips! Apparently I need to move to Australia where there are restaurants that your children can play in while you eat!! LOL Aside from McDonald's here, that doesn't exist here. (Maybe we could start one? I'd be rich!)

Thanks everyone!!
Hartley

Stacey,momof 2 said...

so many good comments already-- But Hartley if you do decide to create a resturant with a play area-- I'm there!
I think it's great that you are being proactive with how your kids are behaving, we know they have challenges, but I think it's really key that you can detail the differences. Good luck on your path -- back to "normal?"

Hartley said...

Stacey -- Seriously, if we had a restaurant that took complicated kids and babysat them while I ate -- I would be there EVERY night. No joke! : )

Abby said...

Oh wow.....that sounds really challenging. I don't know if this would help (if you ever dare trying going out to eat again ☺) but my daughter's OT always reminds me that when we are going to be in a challenging community activity that proprioceptive and vestibular activites need to be part of her day to prepare her.

She does really well after she's been in her swing so we try to swing her before we leave and also have her do some bouncing activities. Even in the restaurant waiting room one of you could be walking up and down the stairs outside with him or playing some sort of movement game where his little body is moving around preparing him for the sit-down time. Just an idea....Sounds like you are an amazing mom!!!

Careen said...

I can soooooo relate! This summer has been one story after another, of regression for our lowest functioning child. School is beginning next week and we have been doing the best we can to prep him for it. I am so glad to find another mom blogging about the experience with special children like we have. :-)

Patty O. said...

Oooh, I love the idea of a restaurant with a play area. If it were set up specifically with special needs kids in mind, it would be terrific!

I have a question. Does Gabe get OT from a SIPT-certified therapist?

It almost sounds like his sensory profile has changed over the years. It sounds like he was seeker before (like my son) and now he sounds like he is on a different end of the spectrum. He sounds a lot like my daughter who is hyper sensitive, rather than hypo sensitive. I don't know if that makes sense. I wonder if that can happen, if their needs can change. Or perhaps they have just become more intensified for some reason. A SIPT-certified therapist should be able to help you figure out what's going on. I know it's super complicated, especially since Gabe has other issues along with the SPD.

I'm sorry you have to go through this! And I admire your courage in taking your kids out. I have never taken all three of mine to a sit down restaurant. Ever.

Kelly said...

Reading this was like a page from a book from my life. Although we only have 1 son, I do the same thing about preparing my son for wherever we go. It's like he needs to be mentally prepared for what is going to take place next. We rarely eat out because of all the extra effort or for fear of being embarrassed by a melt down. My son is also infatuated with Thomas the Train videos & we have gobs and gobs of the trains.

Like your other readers, we saw quite a change in behavior (almost like he was more angry) over the summer, even though he did some summer school. He is a much happier boy with school back in session.

Thanks for sharing the story.

MC Peanut said...

I've only recently been following your blog, so I do not know all of the diagnosis your sons have recieved. However, I wanted to comment about your son seeming "weaker" and having "less endurance". Has he been diagnosed as having hypotonia (low muscle tone)? My sons was diagnosed with SPD (seeker), dyspraxia, fine motor delay, vision problems (tracking)..hmmm, I think that covers it. It took me a while to understand how he could have "low muscle tone" and be such an active sensory seeker. My boy is 10 and he has had a 6 pack stomach for years! The OT explained to me that hypotonia manifests as either weakness or low endurance (or both, I guess). My son only had the low endurance issues, and I had always thought he was just running from one thing to another because of a short attention span. Also, I can totally relate to the limited diet. My son eats so few things. It's a daily issue around here. I will say one thing, even though I may get called crazy for saying it...(but it is just the truth!)...when my son was a baby he vomited a lot. The (stupid) doctor said it was normal, so we kept him on soy formula. Then as a toddler he had a stomach flu followed by vaccinations (yes, stupid doctor said it was fine) and never recovered his ability to drink cow's milk without running to the bathroom. We limited his milk intake but allowed other forms of dairy. I was starting to notice that he had sensory issues (and learn what that meant), and that his extreme hyperness my be related. In first grade the teacher told me he was hitting himself in the head throughout the day. I also noticed he was popping his knuckles on his face A LOT! We removed the remaining dairy in his diet and he immedietly improved! He was still a sensory seeker with many delays, but the behaviors that looked like autism were gone. He is 10 now and about a month ago I gave him some ice cream. Behaviors came back! No kidding! He can't even look me in the eye after he's eaten ice cream. His eyes are shooting all over the place and his head is moving around and he is spinning on the floor or bouncing off the walls. Ok, so my point in that really long story is this...I have no idea why removing dairy helps my son, but it does. No one could convince me otherwise. I have complete confidence that you will get to the bottom of what your son needs. He is so blessed to have you (as you are to have him). Also, I am impressed at his grandparents and his dad at handling things so well, too! Maybe Olive Garden will end up being more of a date night without the kids kind of restaurant! lol! I took my kids there once and my son (SPD) still to this day talks about how awful their pizza is. He will eat nothing from that place! Poor kid! :)
Myra