I’m...so...FRUSTRATED!

In home therapy ended last week, it’ll be about a week before outpatient therapy can start so I went to the gym! I can be found on my bed for the next eleventy hundred hours.

I truly didn’t do anything that would be considered overdoing it. I only did 5 minutes on the bike, then went through the home routine she left me, plus a few arm workouts with lowest weight dumbbell.

Driving back home was incredibly difficult and it’s less than a mile drive. This was my concern being discharged from in home therapy. When doing inpatient and in home therapies, if we pushed it was ok, I could get right into bed. (as opposed to in/out/in/out of the car, driving, walking from car, etc.

I’ve been in bed since getting home 2 hours ago. Pain med taken, maybe took the edge off but barely. I’m frustrated that such a small workout took me down like this. I’m frustrated with how very many times I’ve had to “start over”. I’m just frustrated! Yes I know  it’ll get better, I know I’ll continue to build strength and endurance but right now, in this moment, I’m angry and yes, frustrated.

This is my reality, and the reality for my family who sees this up close and personal day after day. All my smiles and insistence that “I’m fine” fall on deaf ears as far as they’re concerned because they SEE the things I think I’m hiding.

I won’t give up, no worries. Sometimes I just want to SCREAM in rage at this stupid disease and the never ending cycle of flare, recover, repeat. I want things to change but all the wanting and working hard just doesn’t matter when dealing with a chronic illness like Myositis. I know that continuing to want more for myself will at least always help mentally I’m just tired today of the physical failings of my body.

Someone's Caught my PowerPoint bug!

This is for Rookie J, our current and awesome therapist!! (yes, he is a dog, but don't let that make you think he's not qualified!!) Zach has many learning disabilities and has a hard time with the written word, but when he is inspired he goes for it. Rookie J inspires him every single day!

For more info on Rookie J, check out his facebook page------> The Doggie Llama

It's a Rookie J day!

As I think about Z getting to see Rookie J today, I find my own body relaxing, my own breath slowing at the thought of him sitting with his dog brother. Z loves to be near him, yet knows he must control his actions as he gets very close to RJ because this is a little teeny dog! It isn't always easy for kids with ASD to control their feelings. When their feelings come flooding in the emotions are often expressed in an extreme manner. Rookie J helps Zach calmly express the joy he feels. Rookie certainly never barks or acts aggressively if there is too much activity around him--he sits down! The "patient" is drawn to emulate Dr. Rookie and heads to the floor. As calm fills the atmosphere RJ will "smile," do his little yoga stretches, lays down,

or even rewards him by climbing onto his lap!

The serene look on Z's face speaks far more than my words can express. With Rookie J, Z also knows his hands must move slowly and gently. The first thing many people think of when they think of autism is hand flapping or arm flapping or spinning. "Stimming" is the word used to describe these actions and many others that ASD people's bodies do to try and regulate their perception of all the noise and chaos going on around them. When around RJ the world becomes a quiet and calm place where stimming isn't needed. Z gets happily lost in the moments with Rookie J, and learns coping techniques we carry with us back into the real world. 

Rookie J certainly lives up to what his shirt says! 

#1 Best Pal

The best gifts really do come in small packages. For more information about Rookie J, click here for Rookie J's Facebook page

Can we trust anyone?

There's a video going around of an autistic child being abused during a home therapy session, and people are tearing apart the parents for not staying in the room, they are IDIOTS that know nothing.

The parents are not supposed to be in the room. They trusted their gut and then videotaped it and found it fairly quickly, thank goodness. This is yet another reason I homeschool especially Z, because he will take any bad situation and "fix" it in his mind. I'm not talking about a positive outlook, though he certainly is an optimistic guy. For him, and many ASD kids, bad things just do not fit logically in how things are supposed to happen so he does everything he can to find a way to turn the bad thing into a positive and, if he can't, he just won't talk about the situation. Which is terrifying considering what happened here.

Z is older now and processes things a bit better but still it often takes a bit of detective work to find out when something happened somewhere. THIS is why I won't send him to a local day camp that is supposedly superior to all other camps (special needs and typical kids) that ever existed--yet every single summer I hear of several special needs families whose children have been mistreated. (from verbal abuse to physical abuse, it is sickening)

Can I protect him from every bad situation? Absolutely not, but I can try to protect him from as much as possible. When he had a teacher that treated him as a discipline problem in kindergarten because he couldn't complete schoolwork in a timely fashion (she took away his recess and play time), and made him turn his card over (further discipline) because he 'appeared to not be paying attention in circle time,' he regressed to toddler levels and it took a solid year to recoup the loss in social and emotional skills and reinstate his love of learning. I had NO IDEA what she had been doing, but he would cry and have meltdowns every single day before the bus would arrive. It was 6 months before he mentioned something about having to turn his card over every day.

Could these parents have seen this coming? ABSOLUTELY NOT, and they shouldn't have had to ever think about it! Special needs kids get abused in therapy/school settings far too often. This 3 year old baby went through this because so many of these companies see the money in Autistic services rather than wanting to provide real help.

Rookie J the Doggie Llama!

It was an ordinary day at an ordinary library; yet the event about to unfold was anything BUT ordinary. We were about to meet a superhero!

M was signed up to volunteer to check kids in for a "Read to Me" event: kids read out loud to very special dogs. Usually at least 2 dogs are there but that day there was just one special little dog named Rookie J. Youngest went off searching for books and I sat down to knit while I waited, when I saw one of the funniest and most unexpected things in the library--a little tiny dog doing an army crawl, going backwards! I watched as he got up, walked a little, hopped a little, then did yoga stretches with his back legs. Kids followed him back towards the art room and so did I! He was so much fun to watch but soon it was time for Rookie and his Mommy to go into the room for a reading session with a little girl. I saw how Rookie J was with the very small children that had surrounded him, and read what the program was and immediately thought that it could be a good idea for Z, but the program was listed as grades k-4. I had quickly mentioned to Rookie's mommy a few things about Z and she thought it would be fine for next time.

Z had developed some big fears of little dogs so I wanted him to see Rookie before I signed him up, so we hung out with M outside of the room but peeked in the window. After the session was done, Tammi (Rookie J's Mommy) invited Z to come in and meet Rookie. Z was so nervous...but Rookie was amazing. He sensed Z was nervous and took his time getting closer; I have never seen a dog react like this. Rookie wasn't nervous at all, he was completely in tune to Z's emotions and did little things help Z feel at ease, until eventually gently walking up to and climbing onto his lap. At that moment the most remarkable thing happened--youngest's body relaxed. He didn't just calm down, his ENTIRE BEING was soothed and seemed to fuse into Rookie's soothing, calm demeanor. They were communicating with each other on a level that most of us will never know. There had been some extremely stressful events in the days prior to meeting Rookie that had left all of us stressed and upset. That moment with Rookie J took the rest of the pain away and left only a sense of calm joy in its place.

I admit that I became quietly emotional, and I left the room to let Z bond more with Rookie. I didn't want youngest to see the enormity of the moment that I was sensing, I only wanted him to continue being only in the moments he and the wonderful little dog were sharing. Tammi was as in tune to what was happening as Rookie was in tune with Zach; I know that even after I came back in the room, she had some wonderful things to say but, to be honest, much of that time is almost dreamlike in my memory because it was so powerfully moving to see this child, at times so full of worry or stress about this crazy world, so completely at peace with the universe. Later I found out from Tammi that the last 2 children that were signed up were no-shows, which opened up all that time for Rookie and Z to really get to know each other.

Tammi and Rookie J were placed in our path for a reason. In the time after that initial meeting, I believed it was just for that moment of peace for Z--for which I was and would have been completely grateful! There is much more to it than that. I've had the opportunity--BLESSING--of getting to know Tammi a bit. She shared with me that the interaction of Rookie J and Z had stayed with her after we left and she, too, felt things had aligned to have us meet. We got to see them both again a couple weeks ago; dog and boy were instantly one again. I know that might sound corny or contrived but for anyone seeing it, it was real and true. Tammi has amazing ideas for Rookie J and I believe that they are going to do incredible things. Please visit his new Facebook Page by clicking Rookie J, Doggie Llama on Facebook to see pictures of our new little hero and watch the amazing and wonderful changes he is going to make in the world.

Here are some pictures of Rookie J and Z :)