Acceptance is Beautiful

So thankful for the very special people that have entered our lives who have been deemed a "buddy" by my #ASD youngest. They are the people that just accept him and enjoy him and embrace who he is; they have been our own personal savior at times without knowing it, and I mean that sincerely. Yesterday was a very difficult day for Z, lots of stress and triggers and challenges. As his "everything should be happy and good" thinking struggled to fix all the things that went wrong he just was so overwhelmed and had a headache and was dizzy and nervous. When he realized it was Jeff day he wanted to go see his CVS buddy, but was so stressed that we almost left the store as fast as we got there when he didn't see J right when we got in. 

I found someone to ask if J was there and when the answer was yes and that he just stepped to the counter, the smile that appeared on Z's face brought tears to my eyes. They laughed and talked like always. Everyone that works at the store (or almost everyone) knows Z and they welcome him and they know J is his buddy. This guy (J) always makes time for Z and/or has Z go around the store with him as he works. I can't count how many times I've tried getting Z to let J work because I'd worry he was bugging J, and both of them would do the "oh mom" eye roll. Jeff and all of Zach's special buddies over the years, have had incredible impacts on Z's life and therefore also on this grateful Mama's world. 

Movie Meltdown

When you go from him having the most amazingly terrific day to him having one of the biggest meltdowns he's ever had, you're quickly brought back to autism. He pinched a nerve in his neck--you know that feeling, it happens to everyone; but for him it was wrong, it shouldn't happen on such a good day and it was scary and devastating. 

We had hoped he'd relax once in the theater to see Star Wars with his sister. I dropped them off and went to a much put off (years) vision exam for glasses. The bright side is the phone didn't ring until the exam was actually over (about 30 minutes into the movie); sister called to come pick them up and I could hear him crying in the background. Got my contacts back in and rushed over. 

Poor both of them. She was so disappointed about the movie AND for her brother and yes for herself too, and he was just totally and completely in the throes of anxiety. He could not understand why it hurt so much and why I couldn't fix it right then and there and was certain he was going to barf or die, or both lol.  

Motrin is starting to help and with pain relief is coming the beginnings of reality for him which translates to remorse and regrets, both things which are sure to fuel more stress and fallout, but less than this initial round today. He keeps bringing up feeling bad for his sister, then changing the subject as he tries to turn everything back positive again. 

My heart hurts for both of them. All will be better and happy again, my heart just aches for both of them tonight. 

Sports Unity Program

Sounds of laughter amidst applause and cheers. Just what you'd expect to hear at a youth sports activity--but not always what you'd expect to find in a special needs sports program. My heart soars with joy each and every week we are here.

We started with the Marlton Sports Unity Program (SUP) for winter basketball. Z didn't really want to try basketball but after finding out some of his Lenape "boys" were basketball players he agreed to at least try. He wouldn't smile at check in and hung back just a bit once inside the gym, but not more than 5 minutes in a couple of the adult buddies had him out on the court and playing.

He stayed involved and interested the whole season and, when he found out they were giving out trophies one night at practice he lamented "why do they have to stop?"

Getting his trophy from the VERY special
and awesome Coach Dave

I found out there would be SUP track in the spring along with soccer (his favorite sport). I told him I'd signed him up and waned him to just give it a try. As much as he didn't want to try basketball was minimal compared to how he felt about track. April brought the beginning of track and he was nervous about starting. His buddy was laid back but welcoming and encouraging and he was off to give it a try. Now not only does he keep trying but he is working hard to excel! This boy, who hated any kind of running now trying each and every activity leaves me speechless. Running is hard for him: he has loose ligaments and very low muscle tone which makes it exhausting and difficult to run, and the jolting of running along with that feeling of speed (noises of even the wind rushing past/losing a feeling of control over his environment ) are menaces to his sensory system. Yet I see him having a blast and enjoying each moment!

Coach Scott getting in on the action to show Z technique,
with buddy Karly right by his side.

Coach Scott giving loads of one on one tips
for the Javelin throw

Z keeps working hard for Coach Scott, and his
awesome buddy Lindsey.

 

  Obstacle course running

High fives after javelin work ;)

The buddies with SUP must attend a training session where they are educated about things they may experience with the special needs kids and how to address many different potential problems (redirect, soothe, comfort, or even disengage WITH their player from the activity, among many others). They are also told they will not have cell phones out, will not be seen inactive or without their player, and WILL not be tolerated if seen laughing at/about a player. The training shows. These kids, each and every one a volunteer, show more compassion, acceptance, and enthusiasm than many paid adults I've experienced in the special needs fields! 

Mark VonBerg began and runs the Marlton Sports Unity Program which includes the activities of soccer, track, basketball, karate, cheerleading, and soon introducing street hockey. Did I mention every program run through Sports Unity Program is FREE? Thanks doesn't begin to cover it but I'll say it anyway,

THANK YOU!!!

Going Color Blind for Autism Acceptance/Autism Awareness

Each year as World Autism Awareness Day rolls around, a storm begins to brew. This year it seems to have become a behemoth of a storm, with loud rolling thunder and some nasty lightning strikes amongst people that are usually incredibly supportive of each other, sowing judgmental comments and hurt feelings with each click of the mouse.

Aren't we all striving for the same thing? ACCEPTANCE! So let's get to it! Gold for Autism Ausomeness and Acceptance? Puzzle Pieces for Perfect Pervasive Developmental Disorders? Blue for Autism Awareness? And on and on and on....? SURE! All of them are perfect. It's about starting and maintaining conversations to educate, right? Let's stick together and accept each other and realize we are all living this life together.

I like blue. I don't see it as sad as many have said. When a storm clears during the day, what do we look for? Blue sky. See my point? Know what else we look for? A golden sun. And sometimes we even see pieces of a rainbow.

Autism is every day for those of us with kiddos on the spectrum. It's laughter and tears, hugs and meltdowns, milestones and struggles, every single day. We need each other every single day to voice our fears, concerns, and JOYS. Let's come together and stay together and lift each other up.

Some GOOD News about Teens Today

Over the past several weeks there have been some truly horrific stories about teens doing terrible things to special needs people. I'm going to counter that for you today, and I hope everyone pays attention!

Last fall, Zachary was given the opportunity to be a "Little Brother" for Lenape High School's Varsity Boys soccer team. The program was started by the Paul VI girls varsity soccer coach and presented to parents of players in the TOPSoccer program, and I sent an email to have Zach participate.

His first day with the team was on his birthday last year. I was nervous because I know kids can be mean, or feel uncomfortable around special needs kids; as Zach walked up and I saw the incredibly warm welcome given him all my fears subsided. Not only did they have him participate in the practice that day the entire boys soccer program (all levels were out at the practice that day) sang Happy Birthday! Each and every game and/or practice he went to for the rest of that season followed suit, filled with greetings and acceptance.

Needless to say, Zach had been asking about the next season ever since the last season ended lol! Finally in June I sent an email to Coach to ask if they would be continuing the program. I got an email back to let me know that while Coach didn't know if the program itself was still going on, they (the team) would love to have Zachary back as part of the team and invited him to come out to the summer league games, where he was instantly greeted by each of the players. The fall season began this past week. Zach has been so excited and proud to be part of this team, and wanted to express this so naturally he got out his Legos and designed this plaque for Coach. It has a collapsible easel on the back, and is an exact replica of the logo on the shirt Zach wears to the games:

He also wrote a letter. Keep in mind that along with autism, Zachary has pretty severe processing disorders, dysgraphia, and generalized learning disorders. I was on the phone as he was typing and the only help he asked for was how to spell 2 words. Prepare yourselves, this letter is something!

The L on the shirts and all does not only stand just for LenapeIt stands for love loyalty and leadership.And I believe that all of those are in us when we put on the shirts. the L stands with us whether were on that field or on the bench and no matter what. win or lose we are a team. A team that will stand tall if the game gets rough and if we fall we fall together. That’s what I see when I look at this team. Brothers friends and and to see that is amazing in a large school like this many kids don’t even notice each other but in a game like this a team can really get to know each other and I’m glad to be a part of this.  We stand for Lenape and Mt. laurel and we always will.  

There is so much more I have to say and so many more stories to tell about this amazing team; I'm saving some of those in the hopes that this heartwarming story makes it into newspapers. I think Zach's words more than adequately express what this program has meant to him and therefore, to me.

"I Have Autism"

I heard him say those words in public for the first time ever. Z has never discussed the fact that he has autism with anyone except family. I've never discouraged any discussion; autism is just as much a part of our regular lives as breathing.

Our local ShopRite grocery store has been gearing up for the beginning of Autism Awareness Month (April, with April 2 being World Autism Day), for the past couple weeks, by selling papers with the iconic puzzle piece to put your name on, lanyards, pencils, etc to raise funds for Autism Speaks. Each time we have been in there Z would comment how great it is that they are doing all of that for autism. (mixed in with the usual scripteds "I love this ShopRite", "This ShopRite is my favorite store", "Everyone is so nice here", "This is the best store")

Z and I ran to the store for a quick trip for just a few things. As soon as we walked in my beef lover smelled the hot dogs and there was a woman saying "hot dogs, doughnuts, drinks (etc) for autism awareness" by a table. We walked over because Z wanted to know how much everything was since he had allowance money. He ordered a hot dog and soda and the lady, a store employee, started telling us how the money would go towards autism research, and Z thanked her so much for doing this and told her it really meant a lot to him. My gut feeling was that he wanted to tell her, and even though my heart hurt a bit with worry, I asked him, "do you want to tell her why you feel that way?"

With no hesitation, Z said "I'm Z (ok he said his whole name lol) and I have autism!"

The woman was obviously caught off guard, and fumbled just a bit before responding with "Really? Oh you don't look like you have autism. You seem very smart. Here, have a doughnut, my treat."


Hmmmm.


Okay, before you get too upset at her response, let me tell you that as far as I know, Z was so deeply basking in self-pride and amazement that he said it out loud that I don't think he realized what she said; unfortunately I heard and processed every word and while those words made me wince a bit, I followed Z's lead and just smiled.

This isn't the first time I've heard that type of presumption. Sometimes those types of words are used in a person's flawed thinking that they have to comfort me with an assumption that I wold be sad about autism. This was the first time it was said in front of Z. I know that she was simply attempting to say something nice. Here's a suggestion to those of you that might struggle for a quick but nice response in a similar situation, say "Hi Z, nice to meet you!" (a friend of mine commented that, it's brilliant isn't it ;) )

We embrace everything about his autism. Yes he struggles with so many everyday things, and YES of course I am human and have my moments when I lose my patience as do his siblings; but I would not change a thing! As Z himself has said, he has autism but autism doesn't have him.

Follow his lead and enjoy the view.

Turning Blue for Autism

Today is World Autism Day! Will you be showing your blue?

The statistics are staggering: 1 in 68 kids have autism.

People say that's because diagnosing is more common today than even 5 years ago.

I say it is harder than ever to get people to listen.

People say that's because "Most kids diagnosed aren't really autistic."

I say, walk a mile or even a minute in my shoes to see the reality of the struggles every day in our private lives.

I ask you to Light It Up Blue today to show acceptance of those with autism. Those with autism are blessings to our world and present amazing perspectives to otherwise insurmountable problems. (Think Temple Grandin)

For today, don't question the statistics, or the "legitimacy of diagnoses", or anything else about autism--just go blue for today.

Thank You Kevin Reilly!

Kevin is one of Zach's buddies. We met Kevin in 2011 at an autism event held each year in conjunction with the Philadelphia Eagles. The event didn't go well for Z and after I privately let one of the workers know what happened, the event was not only salvaged but also cherished as a favorite day for Z and the whole family. We were given two special autograph tickets, so Zach and big sister Alexis (they are the two biggest Eagles fans) got on line together though they got placed in two different lines. The former Eagle giving signatures at the end of Zach's line was Kevin Reilly.( Kevin's Website, from Third and Long to First and Goal ) I admit I hadn't heard of him but his demeanor with Zachary endeared him to me immediately. Kevin quickly had Zach at ease and even got him to smile!

On the ride home, the little football got wet and Kevin's signature was smeared. Zachary didn't have a meltdown or express anger, he just cried. We all worked on telling him it was still readable and he still had the great memory of meeting Kevin and Zach cheered up. The next day I thought I'd try to reach out to Kevin; to thank him for making such a lasting impression on Zach and for turning a really difficult day into a happy memory. I mentioned what had happened to the little football but told him we could still make out the autograph, and that the little football was one of Zachary's new favorite things. I got an email back in less than 24 hours from Kevin, telling me he had a surprise for Zach. That surprise was TWO TICKETS TO THE NFL DRAFT PARTY! This man who had NO obligation to do anything at all reached out to my child. To say he became a permanent hero in our household is an understatement. In those days that the emails went back and forth, I read some of Kevin's story from his website http://kreilly.com :

Shortly after beginning his NFL career, Kevin was diagnosed with a rare scar tissue tumor. To halt the spread of cancer, his left arm and part of his left shoulder were amputated. After surgery, Kevin worked hard at rehabilitation to overcome the limitations the experts said he would have.

We had VIP passes waiting for us, which left Zach awestruck. Kevin met us at the top of the stairs that led to the VIP area and I watched Zachary run those steps to meet greet him. Anyone observing the hug would have thought they'd known each other for years! 

Kevin introduced Zach to several of his former Eagles friends who autographed the brand new Eagles football Kevin gave him, then told us to go have fun while he did some broadcasting and we'd meet back upstairs later.

Zach and Kevin have stayed in touch off and on since then, with Kevin always responding any time Zachary reaches out to him. Last week Zachary mailed Kevin a letter, and five days later a package arrived for him! Just the day before had been extremely rough for Zach (and therefore also for sister Mallory and me, a different blog entry for that later) so the timing could not have been better. Inside was a wonderful handwritten letter along with a brand new Eagles ball cap and a signed picture of Kevin. Zach had been terribly upset about the meltdowns that overtook him the day before; as he looked at each thing from Kevin, his joyful smile made an appearance and his body relaxed. 

Kevin, I know that you send Zachary letters and surprises simply to make him happy, and I hope his notes and letters bring smiles to you. I want you to know that your acts (that you probably think of as simple acts) have long lasting positive effects on our family. When Zachary thinks about you he relaxes in the memories that have been built with you. He knows all you have gone through and reminds himself of that when things might be harder for him, and keeps pushing forward. Thank you for staying in touch (and please know that just a note or letter is more than enough lol!) and maintaining your "buddy" status, and making a difference for all of us. 

********

Please watch this video from 6ABC Action news that tells Kevin's story:

Kevin is a broadcaster and motivational speaker, as well as actively raising awareness and research funds for Desmoid Tumor Research. Visit http://kreilly.com/motivational-speaker/ for info

These Beautiful Words

I'm about to copy my 13yo son's words to The Lego Group. He typed the note yesterday. Ordinarily I would print it out "as is" and then type it with the corrected spelling and grammar, then mail both to the Lego Group. This time however, he wanted to post it to Lego's FB page. Privacy concerns abounded in my mind but I knew this was important to him, so I let him post. I realize now that almost no one will see his post because of the strict privacy settings I put in place; I decided to copy it here so more people could see it. (more being all 20 of you lol) Without further ado, I give you his note:

hay Lego i have built for years and the thing that keeps me going is that how much time and work you put in every brick and the one thing i'd like to do with my life is to be like you all of you from the .c.e.o. to a janitor cleaning the floor you make more than 1000 smile's a day now that's a job i'd like. even the workers that work at home there helping make that smile two a lot of the time when you see a kid holding a Lego set you can see a smile on his/hers face. that's a smile that means some thing its not all about the money Lego make's its the fans that count its the fans that keeps Lego coming with what they do. its what you do that makes my world go round its what you do that will make smiles keep coming so for what you do thank you. it's not about the money its the sole.

These words are his and his alone. These words come from the heart and mind of a child that so many dismiss as unable to express such thoughts because of his "challenges". These beautiful words are always inside him and have shown me yet again the the value of patience.

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

Serenity From...a doggie?

Rookie J has done it again. We haven't seen him for 2 weeks yet just talking about him soothes our senses. 

The kids had a bit of a rough time this weekend. They were unfortunately reminded of some past troubling events, things that we have had some peace from for a little while. M talked about it and of course said she is "fine". In my personal opinion "fine" means "it SUCKS but I'm being a brave soldier for you," but I do believe that at least talking about it helped a little.

Z on the other hand wanted nothing to do with talking it through. This did NOT fit into the happy space that he likes to put even the worst events into. Talking about it means the bad thing was real. He had a rough night that night, and the next evening's bedtime routine was more stretched out than usual. Have I shared the bedtime routine with you? Oh, please, allow me to give you a glimpse:

1. Lavender spay on pillows

2. Rescue Remedy sleep spray on wrists.Two 'squirts' then rub wrists.

3. Tuck in.

4. Turn on humidifier.

5. Refill humidifier.

6. Set timer on tv.

7. Turn on fish tank light, and feed fish.

8. Get and then bring Z a Tums.

9. Bring him a drink of water.

10. Hug and kiss goodnight. Then another hug, then please one more.

11. Go to door, pull it shut to just a couple inches...

12. "one more hug?", yes, one more hug.

13. Back to door. 

14. The sayings start:

Z: "Good night." 

Me: "Good night." 

Z: "I love you." 

Me: "I love you, too." 

Z: "Everything will be alright, right?"

Me: "yes." 

Z: "Promise?" 

Me: "Yes." 

Z: "Okay. Good night, sweet dreams, I love you."

Me: "Good night, sweet dreams, I love you, too."

I walk away and wait, he shouts some of the aforementioned sentiments, I respond once or twice then say "No more shouting!" He says "okay," and on most nights that's it. On rougher nights it all goes over and over, with him coming out, going back in, etc. Some nights, when I don't respond to the shouting he will say "you didn't say 'no more shouting!'" lol.

Last night, before I tucked him in (step 3 if you are paying attention) we started talking about Rookie J ( Rookie J the Rescue Doggie ). We talked about his face and his calm eyes, and how happy we are about getting to see him on Wednesday. 

Last night I only got to step 11. Z then said "Good night, I love you" and I did my response, then stood there waiting for everything else. Nothing happened.

I said "Okay, good night...."

He said "Okay!"

I walked away and heard nothing more the rest of the night. This was not a coincidence. This little dog has such a calm sereneness about him that radiates not just to the senses but also the soul. Z's soul wants to soar to reach others but he's still learning how to open it up while still balancing out all the noisy disruptions that autism brings. Together they harmonize and while that may sound corny, it is beautiful.

I am feeling so blessed that our paths crossed with his and his Mommy's and can't wait to see where it all leads.

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.

Zach's Protector

Just a short story. For anyone who doesn't know this, Mallory is very into reading anything and everything involving mythology, demons, darkness, fallen angels, magic--I think you can probably pick up the theme there. She's also a beautifully elegant ballerina, loves all things Disney, writes moving poetry and songs, and paints gorgeous pictures. She is passionate yet timid, boisterous yet soft. As I always used to say when she was an, um, adventurous baby and toddler: she is full of personality!

When it comes to her baby brother (who is 13 now lol) she is FIERCELY protective. There is no question about it and it is clear to anyone that knows her or knows us, do not mess with Z or you'll be answering to M quicker than you blink your next blink. She has always been and still is his second Mama; she even took care of him in the crib once when she was 2 and he only about 6 months old, what a surprise when I heard her voice on my end of the baby monitor in the nursery, saying "Hi Gachy!"

Like most kids, Zach has nightmares involving demons, dragons, vampires, ghosts, and other bad guys. Every single time he has a nightmare when any of the aforementioned bad guys are after him, Mallory is the one that saves him. Every time. No matter how much they fight and argue and no matter how much Mallory's "mothering" (smothering? lol) can make him crazy, in his heart he knows she is his Protector. This morning he told me about his nightmare last night and how Mallory came into the dream and saved him yet again; when I said it's so cool how he dreams about her being his hero, he said ""Nah, she just knows how to battle demons. And vampires. And monsters." lol. I explained to him how are dreams hold meanings about what is doing on in our lives and our feelings and that these dreams show that he knows M is always there to for him, to which he gave his classic "weawwy?" (Okay, no he doesn't say it like that anymore, I just sometimes still like to dip down into my denial that the baby is a teen). He was impressed.

Mallory sat at the table reading her book, pretending not to pay attention. But I know my pink bunny, and I know she was moved and most likely wiped a tear or two away, and was also impressed.

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 :)

Carnivals

I should have known better, I really should have known. Actually I'll let myself off the hook just a bit because I had not imagined how very crowded it would be at the carnival. For everything else-did I mention yet that I should have known better?

M and her friend had a good time. Two twelve year olds walking around a carnival with a pocket full of tickets--yep, that works for them!  And D was so happy to be away from THE PUNISHER so he had a good time, too, once he found friends to walk around with.

And then there was Zachary. My little Zachary. It was all too much for him upon arrival, but like a trooper and the optimist he insists on being he wanted to go go go. Our first stop was the funhouse; as we started to walk in and he saw the mirrors and windows maze up close, he got scared and wanted to leave. I promised him nothing would jump out or fall or open up. Keeping him held tightly to me, we moved forward. It dawned on me quickly that this was screaming "ROTTEN MOTHER you-couldn't-have-chosen-a-more-antispectrum-thing-if-you-tried!!" but we were almost through the maze with people in front and people behind, so on we went. He became even more apprehensive when we approached the stairs, which appeared dark and ominous-until I realized we were actually seeing them in a darkened mirror; the actual stairs clearly led up to an open air view. I let the way at Z's insistence and, thankfully, all there was at the top was a spiral slide to go down and it was over. I was so disappointed there weren't all the other typical funhouse type things like the rickety bridge or turning hallway, but it was perfect for Z. He got to the bottom and was at once relieved it was over and proud that he did it. He grabbed my hand tightly and on we went; what broke my heart, just a little bit, was I could feel him trembling. I can't begin to describe the feelings that went through me as I felt him shake like that, I was so sad that something that should be fun for him was actually producing loads of anxiety and fear for him, and I was putting him through it.

Next was the food area where I was leading us to get our funnel cake! The game booths were all around the food booths and Z wanted to try any and all of them. I had tried to explain to him, before we left the house, that carnival games are not like those at Chuck E. Cheese's or any arcade and that they are very hard to win, but once there he just wanted to play. We tried the first game and predictably, we lost. It didn't make sense to him-in his mind we would play games and win stuffed animals just like he has seen on tv shows, and when it didn't work like that he got more agitated. This wasn't the case of a spoiled child and please try to keep that in mind the next time you might see a child like Z, especially an older child, upset about something like that-autism might very well be wreaking its havoc. The next game he tried was a basketball game. I explained to him that the balls were bigger than the nets and it was very hard, and I had him promise me he understood he was playing just for fun. We waited at the counter while the teenage boy ahead of him took his shots. The second ball bounced off the wall, hit the counter right in front of Z and slammed onto his mouth. Yes the worry of injury and pain he might feel upset me; however what broke my heart even more than earlier was the look of utter shock and sadness on his face. Thankfully no blood, no fat lip, and he fought back crying and walked right back up to the counter, with the corners of his mouth involuntarily turning down as his wounded soul kept trying to cry. The man behind the counter felt SO bad, he gave him 4 free shots and game him a little Sixer's basketball even with the missed shots; Zachary said thank you and we walked away. We took to steps, he said "Why did this have to happen? I just wanted this to be the best night of my life, why did this have to happen to me?" and began to sob. He stopped crying quickly and for the rest of the night went back and forth between sad and angry; and from that moment of emotional overload he just couldn't keep the optimism going. Everything became too much-the sounds, the shoving, the dodging; I imagine that for him it was like what you see in a film or tv sequence, when they flash at each thing coming at the character, flashing in rapid succession until the character finally runs screaming away. He wanted desparately to get away but, well, I didn't think it was a good idea to leave my other 2 kids there-not to mention my friend's daughter, too! lol.

I did the only thing I could think of, the one thing that I knew you just couldn't do without spirits being lifted--EAT COTTON CANDY. Believe it or not, it worked! A little bit anyway. I must digress just a little bit here by saying that whoever invented cotton candy was a genius. There is pure joy in that bag full of fluff, in that sticky cottony mess on your fingers you have to lick off, and in that hunk of fluffy sweetness that dissolves in your mouth.

Back to the story. By now the slight trembling I had felt in Zachary earlier had turned into shaking, and I held my arm around his shoulders tightly as we walked. He was so unhappy, and then something magical happened: the lights came on all the rides. Rather than being more jolting to him as you might think, the lights blinking to the music became his calming focal points; he found a rhythm to soothe him back to coping mode. That was when we went on the Ferris Wheel. I wasn't going to go on it because the story of the 11 year old falling was still very fresh in my mind, but I decided that-with Zachary asking to go on-if he was going to conquer his fears than I sure as heck better do the same! It really was a beautiful ride and when we stopped at the very top the first time we had a spectacular view of a glowing orange marble of a sun setting on the horizon, with Philadelphia's silhouette in the background.

Walking back to the van, Zachary worked on convincing himself it was a GREAT night. He repeated the good stories of the night, talking about the little basketball and how brave he was in the maze and the ferris wheel ride. He did a good job and did convince himself; I'll keep what I know as my little secret. Okay so writing it all here isn't exactly keeping my secret but well, you know what I mean. ;)  I think that in spite of it being such a difficult night, he progressed-even though I know that he knows what a rough time he had, I also know that he knows he made it through and it turned out okay. Well that was confusing but hopefully you know what I mean there, too.

Emotions

I'm not sure what is more heartbreaking for me: when Zachary is having a (more and more rare) meltdown, or how he recovers from the meltdown. I am so sad for him when he is having a meltdown because I know there is such an intense level of frustration going on and he just can't sort it out anymore. Yes, I know that's the root of anyone's meltdown; with spectrum kids it is just unavoidable once that water boils up and over the pot. At that point the only real solution is letting the boil-over happen. Yes I can remove the pot from the burner, but until enough water evaporates and there's no more boil-over, or the temperature cools enough, it's out of my hands. The tears that Zachary cries after a meltdown are so deep and so real I feel the pain in my own soul, a pain so deep inside him that neither he nor I have yet been able to fully reach. For some reason though, it seems to hurt me even more when he bounces right back and finds something to talk about or do; I know he is compartmentalizing the hurt and frustration and pain, putting it away in his mind, locking it away and forcing the good thoughts and plans to take the forefront. He has to start talking about good and positive things to restore order to the chaos that had taken over. It sounds healthy, I know--and for him, it is. I ache for him though. He has to make himself happy when there is still anger and hurt inside. As he gets older, as we progress in handling different situations, he does occasionally talk about what had him so upset. Cheyenne (our little mutt, as Zachary calls her) is often his coping mechanism, 20 minutes since the meltdown and he is going through his scripted speaking about and to the dog. "She's such a lovey. We love her and will protect her forever, isn't that right Mama? She's so cute, don't you agree? She's always there for us." This will go on for a few more minutes, then he'll feel better. Shortly after that I'll get a huge hug, the kind that feels that he is part of me, and neither of us wants to let go from that hug. Let go I must, and we do......

Numbers are Backwards & the DANGERS of slip and slides

WOW. Mallory just presented me with an astounding lightbulb moment. Now it may not be a lightbulb moment to you, it may well seem like a fizzing out bulb or even a cracked bulb; well that makes sense cause we all know I'm a bit crazy. :-D

She came to me to tell me something and I was about to roll my eyes and say "Mallory stop getting distracted, Zachary and I need you to finish your lapbook NOW so I can build and erupt that volcano!!", but I waited. Okay I did roll my eyes but I listened luckily for me. Her announcement: "Mom, numbers are backwards!!"

Okay so yes, I did greet that statement with a kind of dumbfounded silence, with the thoughts "Oh LORD don't let her say that in front of other people especially if she just told them we homeschool," and then it hit me. She's right! Numbers generally are made and follow in the opposite direction of letters. NO WONDER SO MANY KIDS MAKE THEIR NUMBERS BACKWARDS!!! And for kids with any tendencies towards special needs it is even harder, because they need things to make sense or be logical, and it just doesn't make sense. This will help me with Zachary; I'm not completely sure how just yet but its another wall, that blocked my view from his world, crashing down.

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On a separate note, SLIP AND SLIDES=DANGER Danger Will Robinson, Danger! Hey guess what, I met the cute guy that played the cute uncle dude on "Lost in Space" in the Newark airport on my way to California in 1985, I have a picture somewhere, he was on General Hospital at the time....oy, as often is the case I digress--oh hell, that's not digressing that's taking a plane and leaving the country. Focus Linda, focus! Okay, right, slip and slides, injury--okay, back on track. So the kids played on the slip and slide yesterday. Last night after Zachary's shower I saw all the scrapes and said "No more slip and slide." Of course today, with Zachary begging and giving the eyes and Dylan giving me the oh mom its no big deal we can handle it look-from-a-teen, I caved. How'd it go? A few minutes ago Zachary went back into the living room, dragging his poor aching body, and mustered in a feeble, weak voice "I'm broken!" Soooo, anyone want a slip and slide????

Ambient Lenses and tears...

To start this off, I have to say that I am supposed to be doing my final weekly assignment for class. I stumbled across a reading that relates to Zachary; perhaps stumbled is a poor word choice. It does seem that when given the choice of a topic to research, I have tended to favor all things autism. I want to understand, I want to feel, I want to grab hold of it and KNOW the ins and outs beyond a shadow of a doubt. I have no desire to change who Zachary is, I've expressed that many times. My desire is to clear a path for him to enable an easier result of happiness and joy. I do feel we are on that path, however it still has underbrush and overhangs needing to be cleared.
I had to choose a skill most people do not have but could benefit from mastering, and use persuasive writing to explain to my instructor the benefits of mastering this skill. I've been tossing ideas around and finally settled on one late last night: The Balance Beam.
Zachary was taking a homeschool gymnastics class locally and was doing amazingly well, thanks to Coach Keith's incredible insight into the "whole-body/mind" connection with gymnastics. Several months into gymnastics Zachary began vision therapy. Dr. Gallop explained in specific but understandable detail why it was so hard for Z to balance, and pointed out his balled up fists and toes. (this is a repeat for those that followed along the early vision therapy appointments) I felt, and still do feel, truly blessed to have people like this in our lives! People like these two men and others over the years (past and present) that have understood my passion to understand Z's perspective as well as help him find the previously mentioned rhetorical path.
Back to the Balance Beam. During a particular exercise in vision therapy on the low beam it is imperative to keep the body tall and look straight ahead into the full mirror, to remain on the beam. The patient wears progressively more distorted lenses; instinctively Zachary will try to watch his feet or hunch down, or both. Dr. Steve reminds him (at times over and over and over....) to look in the mirror. I've watched this, and it is amazing to see the balance he has when he looks up. It wasn't until very recently that I made my own 'real life' connection to this. Coach Keith was suggesting an eye exam for a friend's daughter, who had a fear of the beam. His words were very matter of fact--essentially, if a person's vision is distorted in some way, they lose sense of the space around them, and feel the need to stay low to maintain the only kind of balance they know. (read here LIGHTBULB MOMENT FOR ME!) Keith's and Dr. Gallop's words all came together at once in a rush. Zachary feels off balance in most things, that is why he begins to yawn and stretch and fidget when trying to read (especially if without his glasses), or bounces during a new activity, or even hums when feeling nervous. His world is off balance for him, so he does what he feels he needs to do to recenter himself, low and huddled back into himself. I was reading an article titled "Ambient Lenses for Autism and PDD" (Melvin Kaplan,Latitudes ; Apr97, Vol. 2 Issue 6, p9, 1p), and again I made connections that rushed through me, yet this time also left me in tears. It is a short articlethat discusses a young boy presenting with very similar symptoms that Z presents with; it goes on to describe the initial vision therapy appointment and the ball on the string exercise (see my post http://whyyesiamcrazyandlovinit.blogspot.com/2008/07/vision-therapy.html for that amazing moment) This short article explains what Ambient Vision is: it is the vision that is related to body posture, movement, and the "perception of self-motion". (Melvin Kaplan, Latitudes; Apr97, Vol. 2 Issue 6, p9, 1p) This perception of self-motion is Z's humming, bouncing, fidgeting, hand flapping, I believe. I'm at a loss for words at this moment, as I'm being flooded by emotion yet again. Things have been so clouded for him but those clouds are lifting, I see it, I physically feel it. I am poised to enter a new level of clarity with not only Z's issues, but life in general. My own ambient vision has been skewed, I am only at this moment grasping the concept and grabbing hold of it, for myself as well.

Now I need to get this inspired to write my paper..............