It's Out There, Sorta...

For those of you who read my blog, it's out there, you know about Jackson. You read first hand my take on this experience. But there's another side of the story. A whole other side. Other parents. Other peers. Namely at Jackson's school. I'm not sure anyone there knows except his teachers and some staff. As for the rest of the gang in his class... not so much (I don't think). Is there a right time to tell? How do I tell? Do I even tell? Will it spawn whispers in the corner? No. That's not what I'm worried about. I'm not really worried at all actually. And I don't think anyone will judge him at all. But it's not like I can send home cute monogramed postcards to all the kids to deliver the message either. (Can you even imagine getting that message on a postcard???)

The golden questions still remains. How do I bring them in on the situation? I have mentioned before that we have every intention on Jackson staying at his school so long as he is accepted, progressing at a good pace for him and successful. I think he will be. But with that, part of his success depends on the people he is around, his peers. He spends just as much time with his school mates as he does with us, so it's important that everyone knows. Not because its a reason to treat him any differently, just more so they can understand him and be part of our support team, just as we support all the other kids the same way. I know other parents have to see his differences. But maybe they don't either. Just when I think someone might get a hint, I can't be sure. And taking a step back to put things in perspective (I do that a lot these days), if I were in their shoes and I noticed anything, I wouldn't know what to say or ask. Honestly, I probably wouldn't even want to ask for a fear of upsetting someone's feelings or sticking my nose where it doesn't belong. 

I have learned through this entire process that we all react differently to things that affect us both directly and indirectly. And that's ok. I used to be so quick to judge and think that people didn't understand or get what I was trying to tell them, which is hard to admit. The truth is, they didn't react the way I wanted them to. Cue the perspective... hello Ericka! It's not about how YOU want people to react. It's about allowing other people to take in information and process it for themselves and accept that people need time to be accepting on their own terms. Can we say Oprah Ah-ha moment!?! 

My mission now is to connect the dots. Connect Jackson's autism to the other parents and students at Jackson's school and understand that it's going to take time and a whole slew of "reactions" before everyone can fully understand. Of course I think we will be supported, of course I think they will still love my sweet Jackson just the same, but Jackson also affects the other students as well. It's not all just about Jackson. I have to think about that. I don't mean that in a negative way at all. He will teach them and they will teach him. But there will be times that he will not have the same reactions to his peers. There will be times he gets frustrated with his school work and may act out. There may be times he will be overwhelmed and need a sensory break. How do I know that? Because I we have been there, done that, got the t-shirt folks. 

Although I'm still not sure how it will all "come out" to everyone I'll just take it one step at a time. I'm going to talk to the school and maybe reach out to some support groups for advice and ask other parents who have been down the same road as us. I'm also open and all ears to anyone with advice on this. As my little monkey teaches me something new every day, he has definitely taught me to think outside the box of acceptance and comprehension. No one ever goes from A to B the same way, we take our own path and share our experiences with each other. That's how we learn, that's how we process, that's what makes us who we are.

~EM

The Mummy Test

Ahhhhhh... the MLK holiday. Yes, I was off work and yes I spent the entire day with my two little monkeys.  I don't get too many days at home with them (which may be good for my sanity to some degree, ha) but I often take then time with them when I can and love every minute of it. We stayed in our pajamas til noon, yep noon. Can't say I do that too often either, but trust me, I'm not complaining about having a few lazy hours.

Jackson had a birthday party to go to on Monday for his friend Peter, so at 2pm we headed out to Pump it Up to celebrate and exude some energy for a little bit. Jackson was having a good time for about the first 45 minutes, but a room full of wild boys, bouncing blow-up slides and pegging heads with bouncy balls and you can probably guess how that was bound to end.

Before we reached that point, it was time to leave and head to the doctor. (Phew! Crisis meltdown averted!) Jackson had a EEG (more on EEG here) test scheduled for 4pm. Don't think I got off that easy however. A full on meltdown over missing the cake at the party was the meltdown culprit all the way to the doctor. Ugh... some days I need a raising window in the car. You know like the ones in limos so people can block out the sound from the back to the front. I would have given my left arm for one of those windows during that car ride. We got to Dr. Eastmead's office in Midtown and in we went. Normally I don't like to take Hallie with me, but on Monday she was in tow since John was out of town for work. I was instructed not to give him any caffeine 24 hours before the test, no this, no that blah blah blah, but let's be serious. Jackson is like an operating caffeinated jack-rabbit without the caffeine. Do you really think I give him that stuff doctors??? Really!?!? Ok ok, back to the test. Just had to get that out there. We didn't wait but maybe 3 minutes before they called us back to get started. Lots of gooey gunk, a bazillion wires later and a full mummy headdress and we were ready to go. 

Not to my surprise, Miss Hallie felt the need to be right up in the middle of the action. She held Jackson's hand the whole time and told him, "You're doing reawllly good Jack". I was so proud of her. Only 3, but man she is well beyond her years. She amazes me everyday with how mature she is for her age. She never faltered the entire test. In a way I felt like she relieved me of some of my Mommy duties for this test. She was being the strong warrior for us both and honestly, I let her. It lasted about an hour-ish and Jackson ultimately fell asleep during the test, which he was suppose to do for the latter part of the test. 

As the technician warmed water in the microwave Hallie continued to ask questions and be involved. "What are you going to do with that?", she asked the technician. She told Hallie that was to help remove the sticky stuff from Jackson's hair. Even though that was the answer, she still stared a hole through the technician through the whole process. (ha, my little protective one) Even the technician mentioned how "aware" she seemed to be during the whole process. Normally I don't post pictures from any testing but I feel like this is all part of the journey, so.... head wrapped "mummy style" and another test we can check off the list, here's my little mummy during his EEG. 

Poor thing, he was NOT a happy camper by the end of this experience. I tried to explain that it was just some wrap and that it's ok, but huge shocker here... he didn't care (or even understand). All he knew was that he wanted off that gurney and he wanted that head wrap off! And fast! So fast, that he tried to "assist" in the removal process, which was all but a huge fail of frustration for him.  

On a lighter note, Jackson's latest trick of the trade is to name every female he meets "Woman". So as he was being set free from the mummy gear, he was yelling at the tech saying, "I don't like this you Woman!!!" (lol) Even though it's not funny, we were both laughing at the moment. It was cute, sweet, innocent and typical Jackson in every way. I am more than pooped this week and it's only Wednesday. The results from this EEG will be like most of the other testing, we'll be waiting for a bit to hear results. (big shocker there) Oh well. Glad to have this one out of the way and I think my little dude would second that.  

This will sound silly, but I'm glad Hallie was there on Monday, even if she is 3. I talk to her about Jackson a lot because believe or not, I think she gets it. My very own little pint-sized shrink ha! So thanks to my little peanut for being my rock on Monday. She's the best!

~EM

Just When you Least Expect It

Words. Ohhhh the words. I can't find them. I've had a mean case of writer's block this past week (maybe by inadvertent choice to some degree) But I need to find them. I have been searching for them all week. Multiple times I have thought I was ready to write it all out. A thought or two will come to my mind and I think about writing it down, but end up forgetting the thought 10 minutes later. A good indication I wasn't ready to say what I'm thinking or feeling.  I've wanted to put it all on "paper", but I haven't been ready. Today, I'm trying to be ready. Since our last appointment on January 10th, our lives have changed forever.

The whole idea of "for better or worse" at the alter on the day you marry your best friend never includes the fine print of life. Today I'm living the fine print. All the things that no one tells you will be part of your marriage or life together. All the things that no one can predict or guarantee from day to day. That's where I find myself right now. The best part? I AM NOT ALONE. Because "for better or worse" I have the best man by my side. My partner in crime, my partner in love, my partner for life. 

And with that partnership comes this post. Together. I usually write all of these myself, but today I need my other half to help me. So here we go...

Sitting here in tears, the both of us, John and I write to you. To say thank you for your support. To say thank you for your continued love. To say thank you for reminding us that WE are not alone. A dear friend of John's told him this past week, "God never gives you more than you can handle". Those words are so true. As people we all handle life's trials and tribulations in our own ways, we all react and process differently. That's what makes us who we are. That's what makes Jackson who he is. 

Going in with the expectation of "every appointment is a waiting game" I had no idea we were going to leave there with answers that same cold day on January 10. The neurologist asked me what I thought Jackson had. My reply, "Oh, I don't know" He said, "Yes you do, now tell me." I said, "I think he is somewhere on the autism spectrum and maybe some form of ADD. He replied, "You would be correct". 

His words, "Jackson has Autism. ASD (Autism Spectrum Disorder)-High functioning. (but he didn't stop there) He also has ADHD, OCD tendencies and Asperger's". Holy Sh*t. Didn't see all that coming. (I know Aspergers is commonly known as a form of autism, but our neurologist told us it will soon become a completely separate diagnosis away from the autism spectrum all together and Jackson has all the signs of both, independently and together all in one, but we'll sift through those details in another post). As Jackson and I left the office with reading materials, appointment slips, a prescription paper and more appointments scheduled, I felt frozen. Frozen in that moment. How long have we waited for someone to tell us what we have felt for so long. And how does it feel now that I not only am I hearing it, but it's on paper. I sat in the car for about 10 minutes in complete silence staring at that paper before I called John to tell him. I felt relief, I felt overwhelmed and I felt scared. 

(John's beginning) We have been keeping this very quiet since that day only telling our immediate family and a couple of very close friends.  Not being quite ready to reveal this to all of our other friends, coworkers, extended family, we have been coming to grips that we have a SPECIAL needs son.  The reality of the situation is still sinking in, but we need to be open about our feelings so we can properly handle the situation going forward.  Jackson is SPECIAL.  I mean that in every way possible.  He is truly remarkable.  He makes us laugh hysterically, cry, angry, frustrated & happy.  He is exceptional at memorizing movie lines (gets that from good ole Dad), putting together puzzles (thanks Mom), painting (well, art in general), loves sports, working electronics (future engineer, maybe??), giving the best hugs, and so much more.  It is our purpose in life to make sure that he is given every opportunity to maximize his enormous potential.  Thanks to my best friend and loving wife, Jackson has already starting down this path.  I don't know what I would do without her leading the way with all of the testing and therapy Jackson has undergone up until this point.  There will be more therapy going forward, and we are convinced that this will all pay off in the end.  Speech, Occupational, & Behavioral Therapies are just the starters, but we are so fortunate to have some great people to work with at the Dr. offices and at Jackson's school. 

It is such a relief that we finally have answers (some not surprising, others a little surprising).  For example, I didn't think Jackson would have Aspergers (neither did Ericka), but the more that I have read into it, the more it makes sense.  While I'm sure that we will have more ups and downs along Jackson's path, it just reminds us that we are blessed with such a sweet, caring, lovable son.  As a dad, you never want to have your son/daughter go through anything too trying at a young age as it is hard to comprehend/deal with later in life, but with Jackson, he processes things much different than most the rest of us, and I think he is completely oblivious that his path will appear much different than his friends.  In a way, I think this is a really good thing.  I don't want him feeling "different" than everyone else.  There is a difference between "knowing" you're different and "feeling" different.  

Okay, going to be protective dad here for a minute.  My biggest fear is that other kids will tease/make fun of Jackson through life because he is different or because he reacts to situations completely different than them.  But even more importantly, I don't want Jackson to lose any self-confidence.  There is a time in our lives when we feel like we can "do anything" "be anyone" we want to be, and I don't want Jackson to use his hardships as an out, but rather, I want him to own his uniqueness and channel it to being the best he can be.  I know he has all the potential in the world, and as parents, we plan to give him all the tools necessary to get to the top of the mountain. (John's done typing now, lol)

So, there you have it. Feeling as though our journey has been going on forever (because it HAS), our journey is just beginning. Just when we least expected it, we have answers, just when we least expected it, we are ready to finally put it all out there today. Our story will continue and I hope that through this experience with our little superhero we can inspire you to share our story with other people and to always fight for your children and to stand by them through every part of their lives. Thank you to my amazing husband, who agreed to put some of his thoughts in this post. "For better or worse, in sickness and in health, til death do us part" my friend.

Blessed are you who take the time to listen to difficult speech,
If I persevere, I can be understood.

Blessed are you who never bid me to "hurry up"
Or take my tasks from me and do them for me.
For I often need time, rather than help.

Blessed are you who stand beside me as I enter new and untried ventures, Myself and You.

Blessed are you who ask for my help.
For my greatest need is to be needed.

Blessed are you who, with a smile encourage me to try once more.

Blessed are you who never remind me
That today I ask the same question twice.

Blessed are you who respect me and love me just as I am.

-Author Unknown 

To our sweet Jackson: We will stand by you forever. You amaze us everyday. We love you.

~EM