Disney and Mickey is struggling

Mickey is having a hard time this trip. The crowds are pretty good, it is warm but not roasting hot and we have meds, but still between having a blast, we have had some tough moments of emotional outbursts. Still, I am hoping it is that the meds are not fully back to therapeutic levels. He has also shot up almost two inches in the last 6 weeks, so his dosage may be off – he has been on the same dosage for over a year and we may need a minor adjustment.

To be honest, As much as he loves Disney, it is always more than a little challenge to keep him regulated – it is one of the most overly stimulating places on earth – crowds, heat, lines and just basic stimulation is tough for anyone – even Minnie gets tired and cranky. But for Mickey that is amplified. So, why do we do it? Why do I subject myself to all the things I hate (crowds, heat, people who do not grasp the concept of personal space)? Why do I take my son on the spectrum and my daughter who is endlessly fascinated by everything that drives him nuts? Why do we disrupts bedtime routines and push ourselves beyond what is probably smart? Why do we do it 5 or more times a year? This. This is why.

And it is worth it. The smiles, the rides, the traditions, Dole Whips, the planning, the expense and the utter joy sprinkled between the tough moments are making a lifetime of memories. The cool people from England we met at the pool last night and the fun family from NJ we hung out with tonight. The friends that live here now that we are seeing tomorrow. So much fun, so much to look forward to and enjoy make it worth the tough moments. So, goodnight from the happiest place on earth. Have a magical night (and yes, my eyes rolled just a bit when I typed that, because while I love Disney, it is almost too sugary sweet for me) ūüôā


Eggs, meds and Disney bound

We survived Easter and an insurance related lack of medication (and found a new pharmacy, thanks to a cluster of errors that led to 8 days with no meds) and Mickey was able to barely Рand I do mean barely Рeek out enough points to go to Disney tomorrow.  This was no small feat, considering that the med we were missing is the one that helps him control aggression.  It has been a challenging several days and he had to do more chores than I would ever ask of him to dig himself out of negative points on more than one occasion.

While I realize that the meds likely contributed to the behavior struggles, I am a mean mommy (just ask him, he will tell you) and I still expect civility and for him to use the coping skills he has acquired to control his anger. This is much harder for him to do without his medication and I absolutely understand that and try to give a small amount of latitude, but I can’t let the behaviors go unchallenged or without consequences. ¬†Some may disagree, but for us it is about consistency. ¬†No matter what, the consequences (and rewards) must be the same or it muddies the water for Mickey. ¬†I did however allow him to work off some of those choices and not cancel the Disney trip. ¬†I may not have if it weren’t for the medication situation because some of the outbursts were just that bad. ¬†Some were very reminiscent of our early days after placement only more challenging because he is four years older, 40 lbs heavier and more than a foot taller. Thankfully the outbursts were shorter than they used to be, but the language used was far more hurtful and aggressive and most of the violence was directed at inanimate objects, which was unfortunate for our drywall and his bedroom door but lucky for his sister and I.

We have meds, and we are ready to road trip tomorrow. ¬†No doubt hotel boredom will have me posting at some point during the trip, so I will keep this one short. ¬†Both kids have finally – just in the last three days – started sleeping through the night. ¬†We are doing a little better around here, save Mickey’s bursts of anger. ¬†Minnie has had some emotional roller coasters over trying to get Mickey to his required points value for the trip. ¬†My uncle passed away this week, and though we weren’t close, I am saddened – more so that he is the only uncle of my 7 uncles that I wasn’t close to – a virtual stranger in my life that showed up only for family funerals. We opted not to cancel Disney¬†and subject the kids (Mickey specifically, since he doesn’t process these things well) to a funeral of someone they hadn’t even met and a man I hadn’t seen more than a handful of times in 39 years and not at all in the last 15 years. ¬†My family guilt runs deep – I am a firm believer that you do what you are supposed to do, but this one just didn’t make sense. ¬†Nobody outside of my own head thinks we should cancel and head to Indiana for the funeral, but I still feel guilty. ¬†Another Uncle provided us a great blessing this week and that blessing took a huge burden of worry from my brother, myself and my parents. ¬†With all of the health problems my brother has dealt with over the last six months, this has been the greatest gift of all.

So, I leave you relieved, excited for our trip, immensely grateful for our family and for three good nights of sleep.  Here is one of my favorite Easter pictures Рcheesy smiles and all.