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.