A Birthday and My Reality

First the good! Yesterday was youngest son's (ASD) birthday and party. For the first time in many, many, many, many years, he had friends come celebrate his birthday, friends that he chose; he was so completely happy I have no words to describe my own happiness. The several random and spontaneous hugs I received from him through the night said everything that couldn't be expressed verbally. Even with joy being such a wonderful emotion to feel, it is a strong one and overwhelmed him a bit but only in a way that he knew when he was done and ready to go home both from exhaustion and, I believe, building stress levels from the intensity of the happiness. Only slight worries arose once home, some worry about sleep and only one wake up and walking, otherwise all calm and wonderful. 

Today I actually started thinking that a return to work was maybe around the proverbial corner. Not that I wasn't feeling my disease today, but I wasn't feeling it so intensely. That was also earlier in the morning before I had done too much; I was determined to push today, start trying to get caught up on laundry and vacuuming and since I wasn't feeling too much pain well into the 11am hour I felt like not only could that happen but maybe just maybe a partial return to work was in the near future.

I got laundry folded and sorted, dishes caught up and put away, dog walked and fed, bed made, bug killer sprayed all around outside, windows opened, stop leak stuff put into daughter's car, and the stove top wiped. By 3 the pain started kicking in and my knee stiffness really flared up, but then precious doggy decided to throw up because Mommy didn't add cut up chicken into her dog food so she didn't eat it so she had medicine on an empty stomach; it wasn't really a huge clean up but it did involve being on my knees and scrubbing, and that did me in. My arm strength is gone, and the walking-through-mid-thigh-deep-water heaviness arrived. Reality once again crashed over me like Hurricane Matthew waves crashed over piers this past week. 

I realize I have to get to, no, I NEED to find a level of acceptance with this disease. I just don't know how to get there or find it. I used to think acceptance of dermatomyositis as my life meant resigning myself to it, sinking into it, and I was not going let it get me like that. I'm beginning to realize that some level of acceptance has to happen to maintain my own mental health. I keep getting my hopes up unrealistically and then feel so incredibly disappointed as soon as the symptoms slam me back down.

Tomorrow is a new day, and a follow up with my rheumatologist now that the first rounds of infusions are done. It will be good to get his input as to what I can or might expect as to the swallowing issues I'm having, along with other symptoms that continue to appear. I'm mentally ready to start physical therapy I just need to know when I'll be physically ready! I'd love to start pool therapy but unfortunately my insurance doesn't cover any type of gym therapies. We'll see what he says!

Talking as a "stim"?

I am very used to chatty children, after all 2 of my 4 are girls! Even my older son, the quietest of all of the kids, would have times of verbal diarrhea. (like that? I just came up with it!) Youngest (Z) has his excessive verbage moments just like the other kids. But sometimes, it is different....

...especially in the car. Last night we were riding home from his cousin's birthday party; he had had a really great time, but any social occasion is just that, SOCIAL.

 Social=STRESS,

and stress=ASD flareups. Of course there is a back story here, there had been several triggers leading into this weekend: a few things had Z pretty worried or nervous or sad, but most were good things, however triggers are triggers and ASD doesn't really allow for differentiating. Z gets on these talking jags in the car and I am certain it is stimming. Stimming is "Stereotypy, or self-stimulatory behavior, refers to repetitive body movements or repetitive movement of objects. This behavior is common in many individuals with developmental disabilities; however, it appears to be more common in autism." (Stephen M. Edelson, PhD, http://www.autism-help.org/behavior-stimming-autism.htm ) He talked the entire ride home.

Twenty. Minutes. Straight.

Well, not fully 20 minutes. There were some breaks, some as long as 4 seconds, but mostly 1-2 seconds maximum between. He was talking about anything and everything, much of it was repetitive and scripted speech, which he doesn't usually use around us unless stress levels are running high. M (my daughter, his big sis--the younger of the 2 olders) is so amazingly patient and calm with him, she amazes me--but even she got a little impatient after the third or fourth recitation of  "isn't it so awesome how Captain Jack always has guns."

I believe he uses talking as a calmer in the car because I've worked so hard with him to not drum/flap/snap/hum/growl in the car that he had to find something else. It's just another way for him to quiet all the noise he is hearing and feeling, another way for him to place himself back into control of his atmosphere.

One of the wonderful occasions this past week was getting to meet back up with "Rookie J, The Doggie Llama", and I will update with a separate entry for the magical effects this little dog has on Zachary. Here's one picture to preview :)

He can't help but smile when he sees Rookie J, even just a pic!

WORDS

Autism. Mainstream. Inclusive. Non-inclusive. Integrated. High-functioning. Verbal. Non-verbal. ABA. RDI. IEP.

Words, all just words, and lately I find people increasingly focusing on the words of diagnoses and I'm frustrated. These words put so many ASD kids in a box that isn't easy to escape, through no fault of their own and the best of intentions of the community at large. Awareness is crucial but unfortunately with such large numbers of kids being diagnosed, with much of the awareness comes stereotyping and generalizing. There is no clear standard as to what works with autistic children and adults. People will argue about which therapy works best and colleges and universities teach future educators specific therapies as the be-all/end-all. STOP!

Don't box them in, get to know them. Pay attention to what she's saying but where her eyes are following. Notice his hand-flapping but see the fear in the furrow of his brows. See the jumping but embrace the joy in the smile on her face. The world sounds and feels so different to him and while he reacts differently then "typical" people, don't presume he isn't thinking like Socrates. Take the time to know them and patiently help the thoughts cross from mind to expression of words. 

Patience. Try it, you'll be pleasantly surprised with your world.

Meltdown Mayhem

Today was a day of the cosmos reminding me that youngest is autistic. Okay, honestly every day there are reminders; they are just part of every day and I guess we don't think much of them anymore, and those "things" are all parts of him and if I haven't said it lately, I wouldn't change a thing (hand flapping, bounce-hop-walking, pacing, turning circles, scripted and repetitive speech, habits, aversions, phobias, etc, etc, and etc).

I knew a meltdown was coming. Amid the joy and celebration of Z overcoming so many learning difficulties and becoming a Bar Mitzvah, small and translucent but steady storm clouds were building. He controlled himself so well and kept himself composed and polite through the ceremony and party, through the further celebrations in the days following, through his actual birthday, and through a weekend of changes and new things; yet the autism characteristics were increasing—especially the scripted speech. Z got a great new Lego set, one of the really big Star Wars sets, and set out to start building late Saturday night and continued as soon as possible on Sunday, completing it in record time by this morning (Monday). While we (and many of you lol) know that he builds the most amazing Lego creations straight from his mind, for this set he stayed with the directions the entire time; this was probably only the 4th or 5th set he has put together with the directions and by himself, and this was definitely the largest by far. As early afternoon approached, so did the meltdown. One part of the ship kept falling off and would not stay put. He kept bringing the Legos out into the living room then back into his room then back again out into dining room, then yelling—no, roaring at his sister when she reminded him “no Legos out here.” He went back into his room and was yelling, so I went in to see what was wrong and to remind him to change his shirt. He yelled and growled and screamed and I told him if he acted like that I could not help, to which he replied “YOU DON’T UNDERSTAND!!” Almost comical in that it was such a teenager thing to say, except it was far from a teenager reason. Also just a little comical was his comment “and, no, I AM NOT GOING TO TAKE A BREAK FROM IT,” as I guess he knew he needed to take a break from it and that he knew what I was going to suggest. I left and he headed back into the dining with his ship.

He was working so hard but that piece would not stay put. It was not making sense to him because if he followed the directions it should stay! Soon he was crying, and while he initially let me comfort him, the frustration and meltdown took over. He “roared” louder, yelled at all of us (it does not help that he is the baby, so the girls were stifling giggles because they can’t take him seriously when he’s angry….) I reminded him he was certainly allowed to be angry but reminded him at this level he needed to be in his room and on his bed so he could pound/hit/kick his pillows or mattress, and to leave the ship where it was. He grabbed it and ran to his room and attempted to lock his door—mom was quicker and I had my hand on the doorknob, insisting he give me the ship, and that if he didn’t give it to me other things would need to be taken away. Remaining calm was the only option. He finally gave in, gave me the ship, and stayed in his room until the timer rang. Later he completed the ship and all was again well in his world. These are the only times I will admit to feeling some sadness. When his disabilities crash head first into and through his abilities, I’m saddened for those moments of struggles he has faced and will face. 

Lego Competition Champion!

Youngest entered a local Lego competition (not an official Lego event). I was nervous for the "typical" mother hen reasons--I wanted him to win and not be disappointed! Those reasons I can deal with easier; it was the autism side of things that was truly worrisome: Z considers himself to be a creative builder, he loves the Lego company, he asked people to come vote--so in his mind, he should win. He told anyone and everyone he spoke to about the contest and asked them to please come vote for him. He could understand when I would explain to him he might not win but I'm not sure he could completely grasp it, which actually made things even more stressful. I reminded him over and over that just entering the contest took bravery and made him a winner, and since this was his first competition, and he was competing in the 6th-12th grade level (being a 6th grader) it would be a learning experience for the next time. The other issue causing me concern was whether he would be able to leave his Legos somewhere! He has left minifigures or vehicles or even one little Lego piece in places and would stress and worry until they were safely back in his hands. 

As the day approached his anxiety levels increased. He was so excited that the day to drop off his entry (a built, then re-built, then re-built, then re-built again, then again re-built firehouse) had finally arrived! Excitement+autism=TOO MANY EMOTIONS! He was as nervous waiting for the drop-off time to arrive as a dad in an old time movie waiting to hear news of the baby arrival, so much so that we got there 30 minutes early! Thankfully the facilitator of the contest warmly invited him to leave his creation. The look on his face as we started to drive away was heartbreaking; I asked him what was wrong and he told me it felt very weird leaving his Legos. I'm thrilled he was able to express his emotions to me but my heart lurched at what I feared was just the beginning of emotion overload...

The next 48 hours were rough; Z was edgy, emotional, and even somewhat aggressive. He had meltdowns at not just one store (which is so unusual for him) but two different stores! As I've written before, Z's meltdowns don't look like a meltdown to most people, I'm sure; however these were both meltdowns with one even including raised voice, slamming a freezer door, and attempting to stomp away from me. The humor in those moments is that when he does get angry and walks away, especially when a parking lot or street is involved, he only goes a certain distance and then--again especially with streets/parking lots--waits to grab my elbow. More on that in another post!

The day arrived and he was dressed spiffy and ready to go...only one problem, it was only 7am and we weren't arriving until 1pm! In spite of the clock definitely moving backwards at times, we finally headed out.

Very nervous young man on the ride to the competition

We arrived to find people already there voting for "Crowd Favorite". Z was at least able to relax a little because the formal judging had already been done earlier in the day. Some friends and family were there to support him--and vote for him, of course! ;) 

It was fun to see so many great creations, and it was very cool to see how much admiration was expressed over his firehouse! The rules for this competition were: no sets, no modular pieces, and the creation had to fit within a 12"x12" area and be no taller than 24". To quote Z, "It took a lot of 

hard work to think outside the box while inside the box!"

Finally, it was time for the awards to be announced. I prayed for him to just at least get a participation certificate! He takes certificates seriously, so when they said everyone would get a participation certificate I felt like I could breathe at least a little. As they began the announcements, the kids were asked to sit on the floor. 

They began with preschool and worked their way up, first through "Most Creative". I gasped when his name appeared on the screen for his age group! It happened again for "Best Architecture"...

 and the BIGGY "First Place"!

Getting his prizes and ribbon

Absolutely unimaginable ending. NOT that I don't think he's great at designing and building Lego creations--I just wasn't sure how anyone else would "see" his work. To say we were all incredibly happy is the understatement of the millennium. Legos are so much more to him than toys or building blocks; Legos are part of who this child is and who he will become. For Z, this was just further confirmation that his plan to work for The Lego Group will be reality. For me? It was an overwhelming journey of emotions leaving me drained but full of gratitude.