Journey of a Mom of two amazing children on the spectrum
Friday, 16 August 2013
First and foremost, I want to say that I am so glad that these two days did not end up being “me time”.While I am still desperately in need of this, the special time I have had with each of my boys, Nate on Thursday, and Jack today, is irreplaceable.When I look at pictures from today and realize just how big Jack is getting it’s just so bittersweet.I mean, yes, I’m short, I know, but he is really gaining on me already!Ugh….it’s been nice not being the shortest person in the house- for once.
Today was chock full of a million activities for me and Jack.We started our day by driving to D.C. for another study visit at Children’s National Medical Center, where I once again reported- no change with memantine.I feel like if they really want to evaluate his progress they should stop making me fill out the same darned questionnaire and instead follow us down a hallway for maybe 10 minutes.See how nice and calm and engaged he is---NOT!That’s all I have to say about that.Luckily there were no blood draws or other torture during today’s visit aaaannnd…. Our next one isn’t for 6 weeks!We have graduated!Here is our celebration….
After this we drove to Target to get school supplies.I remember when I was younger I loved getting my school supplies- finding the best Trapper Keeper ever and picking out a rad thermos.Check out Jack’s face- clearly he does not share my enthusiasm.Any reminders that more “fine motor” or “motor planning” (as he puts it thanks to his OT) activities are headed his way are not welcome.
When we finished this lovely activity, which honestly consisted of him shrieking every time I added a notebook, or pencils, or God forbid SCISSORS to the cart, we headed to the mall for the promised reward (for both of us).We went to see the movie Planes!!!And I have to say, if ever you were going to pay the extra buck fifty for 3D, this is the time to do it.It was a really cool experience.I have figured out several strategies for making movie going a positive experience for Jack.First, we get popcorn- no candy, the sugar makes him completely wacko within minutes.OK, so the popcorn has “dairy” on it, if powdered butter dust can really be considered dairy- this is the least of the evils for Jack.Second, we sit at the very front of the theater.I have long since given up on keeping Jack from talking throughout the movie.If we are in the front, at least it doesn’t disturb anyone.And believe me, he could not stop talking during this movie.I have been looking forward to this experience with him forever.If it wouldn’t have caused incessant flashing I would have taken a million pictures of his face while he was watching the movie.That was what I was watching- him.Soooo thrilled.And he was very good.I was really proud of him.
Then the sh** hit the fan.And it was NOT his fault.We went to the Disney Store, which is right down the hall from the theater when the movie was over.I had been planning this- we receive reimbursement when we go for study visits and after all of the blood draws he has recently endured, he deserved a reward, so I figured we could pick up one of the planes from the movie.He did really well in the store, he even helped me pick out a little “Woody” doll for Nathan.Of course the minute we checked out, he wanted to hold his new plane.This is not an unreasonable request, and given his obsession with propellers he has really come a long way in terms of being patient with holding a new plane.When he first gets a new one, he needs to “test” the propeller to ensure that it has adequate spinning speed.This is highly important to him.So after we checked out, we stopped at the door of the store and I tried to open the packaging for him.I expected the usual RIDICULOUS twist ties on the bottom that would take some doing to open.I WISH.The GD thing was held in with SCREWS!!! BIG ONES!Because every parent comes to the Disney Store armed with a screwdriver of course.I’m sure Jack is the first child ever to have a nuclear meltdown over this particular packaging strategy (sarcasm).That being said- it was bad.The mall was crowded and we had to walk quite a distance to find a bench with seating available.He escalated with every step we took, and unknowingly, according to him, I was smashing to propeller as we walked.When we finally sat down, I whipped out my keys and tried to fit one into the groove to unscrew what I assumed were short screws (Phillips head even) anchoring the plane.Wrong answer- this is how long they were
WTF Disney Store?!?What are you trying to do to me???It took me a good 5 minutes to get each screw out, and by then Jack was basically a puddle on the floor.And I don’t blame him a bit.People were staring at us from every direction, and I was to the point in my frustration that I just wanted to stand up and shout “What???Have you never seen a kid cry before??”Get over it people.This is his favorite thing in all the world- he’s 6- and he’s been good all day.It was bound to happen at some point.Luckily, once he had “Turbo Dusty” safely in hand and had done the requisite propeller spin (great spin I have to say), he was good to go.Other than the fact that he almost walked into approximately 50 people in the next hour because he wasn’t watching where he was going.We got something to eat at a restaurant in the mall, where two little boys asked to see the plane, and then hold it.He handed it right over!I was incredibly proud of him for that.He didn’t even flinch when they gave the propeller a spin.We headed home after that- this mama is exhausted.
This day was completely priceless.The next time his study psychiatrist asks me if I have seen any benefit from the memantine, I am going to say yes.Because this study has provided Jack and me with some mandatory special mommy-son time every few weeks.And this time with him is very precious to me.This may not be the benefit she is hoping for, or the answer she wants- it certainly isn’t the reason I enrolled him in the study- but I’ll take it.