Add this to the Autism list

Ok, so Jackson has his quirks, his tremors, his own unique and sometimes strange ideas about whatever the subject may be at the moment. I get it. Sorta. But none the less I still get it. I am patient (mostly), I am kind, I try to be loving and understanding, but there is one thing that I CANNOT stand!

WHY WHY WHY WHY WHY ON EARTH DOES MY CHILD LIKE TO LICK FEET?????

For the life of me I do not and cannot nor will I ever understand what is entertaining funny or appealing about licking someone's feet. I mean what! I just don't get it. It's gross, it's disgusting and yet he finds it hilarious. Why on earth anyone would want to lick, touch and really even look and study feet?

I guess it's just another mystery of what's really going through his mind. Having a child who is autistic is like the eighth wonder of the world. You don't know how it happens. It's just this mysterious thing that is just out in the open but no one can seem to give any one real explanation, only ideas and "medical" reasonings. You don't always understand why things are the way they are and I really don't understand his thought processing when it comes to all things autism. 

The whole foot licking thing is just another one of those things I'm not sure I'll ever understand but I guess it's just another small thing in a big picture. I only wish I knew how he can be so focused and obsessive on some things (feet) and then other things I want him to be able to focus on-likes school work, he can't. Getting back on my trail of searching for tools, resources and help groups I'm full steam ahead again no matter how hard it is. On top of ADHD and focusing side of things, we're starting to talk school plans for next year, new therapies and more evaluations to include a neuro-psychological eval and behavioral therapy suggestions. The behavioral part comes in because as sweet and kind as my sweet little hugger is, he can also have a polar opposite side and when that rears its ugly head, Jackson can become quite aggressive sometimes. 

In an effort to protect him, our family and anyone he interacts with I feel like the behavior therapy is the next big thing on our list to get started. By no means do I think he really wants to hurt anyone intentionally, I just don't think he always fully understands there is a line you can't cross. He doesn't understand that just because someone calls you a name it's not a personal attack. It's just that the kid calling you a name is just that... a kid. Just a silly kid doing silly kid things. They don't really mean any harm of course, but Jackson's perception is that he is being attacked and so good or bad, he reacts. Try explaining that one or being in a public situation where people have no idea who Jackson or anything about him. Yet they judge and stare because of his actions. Sometimes, well a lot of times that is a hard thing to deal with friends. It's uncomfortable and it's hard to know if the choice you make in that moment was the right one or the wrong one. Not that I care what anyone thinks, because I don't. My concern is am I making the right decision for Jackson at that moment. Anyone have the answer to that million dollar question? 

Taking one things about an hour at a time, I'm continuing on and putting one foot in front of the other.

But for real if he licks my feet one more time.... 

~EM

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

A Day I'll Never Forget

Just before the holiday season of 2012, a cloud of sad and somber seemed to linger I think. From the many children and adults in New Town, CT that did not survive the horrible Sandy Hook Elementary school shooting to the fallen police woman here in Memphis, it just seemed like death and sorrow was all around just before the season often referred to as "the most wonderful time of the year" was fast approaching. I'll be the first to admit that I have never had the lifelong dream of becoming a police officer, firefighter or anything involving a uniform for that matter. But I do have the upmost respect for all the people that serve our communities and wonderful country to keep us safe every day of our lives. There will never be enough thank you's or money to justify what those people give so selflessly for the greater good. 

On Friday, December 21, 2012, I was headed out to lunch to meet my hubby and Jackson. As I was driving down Germantown Parkway to meet my boys I noticed two firetrucks parked on both sided of the roads and they were raising the American flag. I wasn't sure if there was maybe going to be a Christmas parade over the weekend or something, so I just went on my way. After lunch I headed back down Germantown Parkway and soon figured out the reason that flag was flying high in the air. Traffic had come to a complete standstill, which isn't and wasn't necessarily a surprise on G'town Parkway, but that Friday it was backed up further than I could see going forward and backwards. As I sat there my first thought was there was a wreck. Ok, 15 minutes later and still hadn't moved. Starting to think it must have been a bad wreck. Then came the lights. 

I then realized what was going on. It was the beginning of the funeral procession for the fallen police woman and mother, Martoiya Lang. I rolled down my window and watched the whole thing. I have never seen so many police officers or longer funeral procession in my entire life. Motorcycle after motorcycle passed along with ambulances  and more unmarked cars than I could count went by. 

The moment was almost surreal. It's was like the whole thing went by in slow motion. People started to put their cars in park, myself included and stand outside to watch the solemn scene that was in a way "parading" by us. 

My mind was blank. All I could think about was a woman that lost her life just a week before, four children that lost their Mommy all too soon and the abundance of tissues I could see through the windows of the officers driving by. Most of them had their windows down. 

                  

As her car passed, the family cars followed behind. At that moment, I could not do a thing but cry. And by cry, I mean balling ugly cry. The moment was so sad and so real I just broke down. And I wasn't the only one. I looked around me and a lot of people were crying. I imagined those four beautiful children in a state of shock and devastation. I couldn't even begin to feel their pain. I was parked on Germantown Parkway for an entire hour before the entire procession passed. I cried the whole time.  Why I feel compelled to share this I have no idea. Maybe it's my way of paying my respects to her? A small thank you for risking her life to serve and protect only to fight the fight she ultimately lost in a terrible way. 

Maybe it was just a good dose of perspective for me? It made me so thankful for my children and my husband and my family. It reminded me that we are never guaranteed tomorrow and that we should really count our blessings every day. I know we all face our own struggles and journeys everyday, just like my sweet Jackson may be facing, but it also reminds me to be thankful that I am here to be a part of that journey and that life is so precious. Somehow all my so called "problems" seemed like nothing that day.  

I hope, pray and wish for the young Mother, officer, Martoiya Lang (who was only 32) to rest in peace and that her children will feel the love and support that I am positive they are surrounded by. 

As the procession ended and I headed back to my office, I saw the American flag flying above the road I had seen on my way to lunch. I saw them take down the flag just as I saw them hanging it up when I first started out to lunch. For some reason it just symbolized to me that everything in our life has a beginning and an end and that time moves so fast, sometimes faster than we want it to. 

Counted my blessings and prayed more times than I could count that day. Rest in peace beautiful lady and thank you for your dedication to serving others. 

Definitely a day I'll never forget...

~EM

(read more of Martoiya Lang's funeral service story here) 

Do You Hear What I Hear?

Holy goodness. The last few days for our country and locally in Memphis have hardly been filled with joy and the gift of giving. Unfortunately, we have been filled with sorrow and the sadness of loss. Loss of a local police officer, a mother and a friend to many. Loss of children, teachers and administrators in the ever so lively media covered aftermath of the horrific murders at Sandy Hook Elementary School in Newtown, CT. Might I add I have really not been watching much of the media coverage on that. I just can't bring myself to turn it on and listen to too much about it. The media continually makes references about the school shooting as the "2nd worst in history". Last time I checked, any loss of life in a school is a tragedy, no matter if it is 1 or 21. My prayers and heart definitely go out to all of those families laying their loved ones to rest. And Adam Lanza, whew that name is hard to type. What a troubled young man. Apparently he suffered from Asperger's which is so sad. I often wonder when things like this happen, what causes someone to take such extreme actions??? Just another reason for parents and the entire world to be truly educated about struggles they are facing whether it's related to mental, social or emotional causes. I can hardly even imagine what those families are feeling, especially right before the Christmas holiday. 

Speaking of being educated on those situations, I received a packet in the mail for Jackson's psychological testing in January. It's all starting to seem real and yet so surreal at the same time. I will say here lately Jackson has been doing pretty well. He is VERY EXCITED about the Christmas holiday. He gets kind of "fixated" on certain toys and things he wants and the other day at Target he was riding in the cart with an Angry Birds Star Wars Jenga game. I literally had to put it on the counter, have the clerk scan it and put it in a bag to make Jackson think we were buying it. We finished up and he was scouting out the bags for his game and started to panic because he didn't see it. (btw I'm becoming quite crafty on spur of the moment solutions for our breakdowns, ha) So I told Jackson let's go back to the counter and ask the lady that checked us out about the game. She knew that we weren't buying it and put in under the counter, bag and all, which I appreciated her going along with the "plan". So we look for the bag and I quickly told Jackson, "Oh my goodness Jackson, Santa must have come and picked it up to put it in his sleigh for you for Christmas. No wonder we can't find it!" He looked at me and replied, "That sneaky Santa!" Ahhhhh ha! Yes! He totally bought it and the breakdown was minimal! WHEW, that was a close one! So we left and everyday since he's been talking about that game and that Santa better not let him down, kinda deep there but I know what he means! (Thank goodness that's what his Godmother got him for Christmas so he can make sure he gets the gift! Thanks Aunt Kim!) 

Our wonderful teacher Ms. Beth! Love her!

School has also been going pretty well. He has had good behavior for the most part and we have been working for about 3 weeks on memorizing his line for his Christmas program. Last night we went to see the program at the school and I was a little nervous that he would not say his line. For the last three years he has never participated in his Christmas programs. Instead he has stood there like a statue, completely not interested and did not act the least bit phased by not participating. I have the video to prove it. 

Ms. Beth's Assistant teacher, Ms. Wendy! We love her too!

So fingers and toes crossed, my Christmas wish was that he would just say his line when it came time. I knew he probably wouldn't sing (he's not big on that) but if he would just say the line, I'd consider that a win. The program got started and the time came. I think I stopped breathing for a minute... HE SAID IT! He didn't even flinch! And when that microphone came to his mouth he said, "And Joseph put Mary on a donkey and they went to Bethlehem". (Whoooooo!) Cue Mommy tearing up. I was trying to video, cry, clap, smile... haha. I have never been so proud of Jackson. He had been saying all week he din't want to do his line, so when he did it I was so happy to hear that line! Never mind that his teacher told me after the program that there was a bit of "compromise" (aka bribery) involved if he would say his line. I don't care, whatever it takes. I know other parents can relate to that. You pick your battles and sometimes you have to give a little incentive to get a little performance and that's what we got!  

                                   Jackson and Grandpa                                                Jack & Sister Yosefa

 

I felt I like Jackson had a "tiny Tim" moment last night. Against the odds of him saying his line, he felt the love and support of Mommy and Daddy, Hallie, Grandpa and Nona and Uncle Derek and Aunt Katie there to support him along with his teachers and classmates. He beat the odds! So, recapping the "performance of his life" here's my little monkey saying his line at his Kindergarten program and some pictures from las night. 

                                        I love hearing this little line! So proud of my monkey!

Looking forward to spending time with my family and hugging my kids countless times over this Christmas holiday. I hope everyone has a wonderful holiday season and as Tiny Tim would say... 

"God Bless us, Every One"

With Love,
~EM

Filling in "THE" Blank

What's that expression? Close, but no cigar. Yep.... that's about all I got at the moment. (excuse the poor but deliberate English there) Call it what you want, I call it CRAP. Serious CRAP. Sooooo...... of course after I posted my frustrations about this whole "blank" that was left blank, I finally got someone to answer my call later that same day. Go figure. (more on the "blank" here)

I guess it should come as no surprise that every time I take two steps forward, consequently I take two steps back. Or at least it feels that way. Just as I think we are making "progress" with all of Jackson's testing, my phone call for answers didn't quite fill in the "blank" like I thought it would. 

Let's set the scene...me on my cell phone, pen and paper in hand ready to vigorously write every word of the conversation (you should see my shorthand from these medical calls, the dog could write neater LOL)  and then we have the nice lady on the other end of the line at the therapy office. Pretty simple, right? I begin to ask her about the ever so dark blank line from our OT evaluation and why there was no medical diagnosis on the line and her response to me was, "Oh, a doctor has to do the official diagnosis, so our screening for his occupational therapy is limited without a medical diagnosis" (Cue my interior monologue: "Excuse me what!?! I thought that's what you all were doing? She can't be serious? Is this for real?") My real response came out as "That's what I thought you all were doing?" She then went on to tell me that they cannot medically diagnose for Sensory Processing Disorder or anything else OT related, they can only do an evaluation at their office. (Ummmm, NOW'S a FINE TIME TO TELL ME THAT!) So I calmly (yes calmly) asked her what I needed to do about getting to a doctor that can give me those results so we can continue on the path of getting Jackson the testing and things he needs to succeed. We went back and forth for almost 30 minutes and to make a long story short, I needed another referral from our pediatrician for psychology testing and he needs to see a neurologist for the sensory testing. We are also planning to meet with the school about Jackson going into first grade next year, etc. which I explained to her as well. We were coming to the end of our conversation and her advice to me what that I just needed to be calm about everything but that she also maybe should have pushed a little harder for the other testing things for Jackson and that she wanted me to just enjoy my Christmas with my son blah blah blah (yep I was tuning her out by then) Hmmmm, okayyyy. And I'm suppose to still be calm? I could feel the steam starting to come out of my ears at that point. 

I sat there in silence for a minute. How would you respond if someone said "I should have pushed harder for your child"? I simply said I would be in touch with our pediatrician for the other referral and we hung up, although I was ready to BLOW up! For a minute, ok maybe a few hours, I felt like I was failing at all of this for my sweet Jackson. In my mind I was falling just short of success and getting nothing for my efforts. How could I have missed these important things. Why didn't anyone tell me we needed additional doctors and referrals? I guess I shouldn't have been so surprised. Things could only go "according to plan" for so long on this long journey. So, I called my Mom, threw myself a short pity party and put the whole conversation to rest. I just couldn't think about it anymore. Talk about having the scrooge mentality, phew. 

Fast forward, I called our pediatrician's office to send my "cry" for help because I wasn't sure what else to do. Lisa at the office, (an angel in my book) listened to every word of whining and complaining about my phone call. She told me not to worry and that she would call the doctor that we needed to see and demand that we get some answers so we can get back on track.  Keep in mind I have been trying to get in touch with this neurology clinic for a while to see a great psychologist, or so I have been told that he is. Within about three hours she called me back. Whoo! 

Now to fill in that blank. Lisa said, "You're in." THAT was the answer that was missing from the blank. We are in. Finally, we are in. HOLY...... And we are in with a good one, maybe the best? What a sigh of relief. OMG what does that mean? Well, so the neurologist that we are scheduled to see will evaluate Jackson to diagnose or rule out Sensory Processing Disorder and he will also be doing Jackson's Autism and ADHD testing to diagnose or rule those things out as well. He specializes in pediatric ADHD and all forms of Autism. (We do have a psych eval for Autism with EDFTC but not until at least February due to their physician being out on maternity leave) But Lisa's magic has fast forwarded us to another doctor for January 10, 2013. 

That's 28 days from now. Days that will go by fast, but seem like eternity. I called John to tell him and I was so overcome with emotions. I wanted to smile, cry, jump up and down, not to mention I feeling drained all at the same time. (that's a one woman circus of emotion huh? lol)  After years of wondering and searching, we are finally getting "our turn". Suddenly, my world stopped turning for just a moment. Nothing mattered at that moment except knowing my itty bitty monkey is going to get his turn. 

I could HUG and KISS you Lisa! Thank you will never express my gratitude to you. As we approach Christmas, the season of hope and my mind goes a mile a second...

Some days are a rock, some are a stone. For now, I won't look forward, nor behind us.

I am looking for hope and I have fear. What's on the other side of January 10th I do not know.

I cannot predict and don't want to think, I just want to give one final sigh of relief. 

I want to succeed as a Mom for my child, this world is beyond wild. 

And I am not scared of what's to come, though the path is not clear.

So for now, the blank has been filled and my time is served best... right now, right here.

Do not be afraid. I bring you good news of great joy that will be for all people. -Luke 2:10

~EM

You Can't Have That

Ever heard the words "you can't have that"? It's like finding the perfect pair of heels only to flip them over and see just how many 00000's are behind the $ sign on the tag. Shattered dreams.....

So okay, you recover and your on to the next thing. What about repeatedly being told "you can't have that"? That's a whole other story. It's hard enough to process things you can't have (for whatever reason), let alone when you process things a little differently and are told those 4 yucky words. Which leads me to my point. Yes, there is a point here. Ha! I know there are tons of allergies out there with our kids, our own allergies, etc but do you live with one? Do you stare at food labels and read them like a hawk? Well, I do. 

Jackson is allergic to tree nuts. What are those.... well anything like your pine nuts, walnuts, almonds, cashews (especially those little half moon suckers!) and others. But he can have peanuts (for now). Anything that can potentially contain tree nuts, he cannot have. If you have ever been to an allergist you know that little porcupine looking gadget that poke your back with?? Yeah, it has traces of the elements on it when they are testing you for an allergy. Jackson blew up like a balloon before the nurse could even get finished and get out of the room. Cue the epi pen epidemic!!! We have SIX of those suckers! One at school, one at home, one in my purse (always), two back ups, and one that travels in an overnight bathroom bag in case he spends the night anywhere without me and John. 

We figured out this lovely "allergy" a couple of years ago, thankfully at a graduation party for our friend Patrick who just so happened to be graduating as a NURSE! So lots of medical people were on hand at the time we tasted the lovely cashew that caused Jackson to blow up like a balloon. He didn't even look like himself he was so swollen. Long story short here....luckily, with the medical folks there, a police officer and a whole heck of a lot of benadryl, we had him under control pretty quickly actually. (Mr. Cop was trying to pull me over for speeding down Poplar in Germantown, until I rolled down the window and he saw Jackson's face and became our escort instead, hehhehehe I won that one Mr. Po-Po!). But seriously, whew! 

Looking back on that night, it was really scary to see him so swollen! But now we check everything. I had no idea how many foods are made with tree nuts or manufactured in places that touch tree nuts. RIDICULOUS. Especially the good stuff like cookies, muffins, cakes, etc. So last night we were ready to make some cookies from our cookie dough I ordered as part of a school fundraiser. Then I read the label. Yep, you guessed it.... so I delivered the news to Jackson that we can't make those cookies because they have tree nuts in them. Commence breakdown. Hurry Mom, plan B, you need a plan B. Ok, other cookies. No other cookies in the house (of course not, that would be way to easy). So with my crying little man, I offered for us to make muffins. Which I'll insert here, DARN you Hostess! They were pretty much the only ones with the mini muffins pre-packaged without tree nuts! So, I got some other muffin mix sans tree nuts so we could make our own. I offered to let Jackson do all the mixing and make his own. Problem starting to divert! We are working with him on his adaptive behavior skills (you can read about that  here). So I thought if he could try to make these on his own he would feel a great sense of accomplishment, have something sweet to eat, and it's even better for you than cookies! I've lost count on my win win's with this one. LOL

To most kids making cupcakes, etc is cool when you are little but as they get older they are just more interested in eating them, than the whole baking/kitchen labor part. But Jackson was so excited to make his muffins last night and I let him do the majority of the work on his own! He only got upset once or twice with the mix "missing" the mini cup on the pan. (he likes things neat, not outside the lines, so muffin mix on top of the pan will not do for him) But I gave him a napkin and showed him how to clean it up and try to move on and not "obsess" over a little spill. He did pretty good with it! He even set the timer on the oven (he's obsessed with the "countdown" of timers) and then put his hand in the oven mit with mine so we could take out the muffins together. I gave him a toothpick to "stab" the muffins so he could get them out of the pan without burning himself and put them on a cooling rack. 

Super excited and so proud of himself he asked to call Grams (aka my mom) and tell her all about them. (He rarely asks to call people on the phone and usually has to be prompted or helped with his phone conversations on how to respond, so the fact that he wanted to call was so awesome!) He was so happy that he had done it. You wanna know what making muffins really means in Jackson language? That means with a lot of practice and help, he has the will to do better. That means he understands what it feels like to succeed. That means my little monkey can improve in everything he does and there is no limit to what he can do. Of course it takes an entire post about allergies, muffins and yelling at Hostess to get me to the "read between the lines" message here, but my point is just because "you can't have that" doesn't mean you can't have something else that's even better that what you wanted to begin with.

Hanging my hat on a HUGE hanger of success for this one. And my little superhero being super proud of himself... I can't do  much better than that. 

~EM

Memphis- Birthplace to Bon Qui Qui? Huh?

I know you are wondering what the heck is this post about??? Well... as I am STILL patiently waiting for more of Jackson's test results, (there's always tomorrow huh)  tonight it's time for a post with a little ehhhh light-heartedness. Soooo here we go.....

Often times with all the stresses going on from day to day, I search for the little things that keep my mind clear, make me giggle like a school girl and maybe contribute to my sanity in some small way. After all, you do burn calories from laughter and I can't remember anyone that just loves to be around a scrooge, right? I'll admit I am a junky for all things funny from movies, to SNL, to completely obnoxious cards I can send for holidays and birthdays. (sorry family hehehe) But my huge weakness you ask? YOU TUBE & HULU. Good grief I could laugh at ridiculous skits and "wanna-be superstars" in terrible video clips all day. It's amazing the things people will post. Some hilarious, some not so hilarious and then there's always that ONE video that has to be somehow related to home.....Memphis. 

Known as the birthplace of Rock and Roll, Memphis has produced it's share of mega superstars like Elvis and Justin Timberlake along with our great city name  being "name-dropped" in  more songs that any other city in the world! (bet ya didn't know that tid bit did ya... if you did, humor me and act like I taught you something today ok?) But of all the great history and musical artifacts Memphis has to offer, we also have a small reputation of being labeled as ghetto? At least from outside this great city. And is word ghetto even cool anymore? Well, you get the point. Now don't get me wrong, I've had my share of uh um how do you say it...interesting experiences (yes that's a nice way to put it) for the last 10+ years I have lived here. Which leads me to this chick....meet Anjelah Johnson aka Bon Qui Qui. Funny, somewhat ghetto and guaranteed to make me laugh every time I see one of her comedy skits. What I didn't know is how Bon Qui Qui came to be... until yesterday! The short clip below recaps her experience of being at, yup you guessed it, a MEMPHIS Burger King drive through. 

Between that "drive through gal" and her brother (I'm guessing he's a hoot) Bon Qui Qui was brought to life. HA! What!?! Who even knew Bon Qui Qui stemmed from something and someone that was actually real in little ole Memphis, TN.

For your viewing pleasure and maybe a few chuckles, I hope Bon Qui Qui makes you laugh and appreciate all the "characters" you encounter. Funny things like this remind me to never take myself too seriously and give thanks to all those that contribute to my well being from a good daily dose of laughter! Providing Memphis history and a cheap laughs, hmm not too bad for a Wednesday! 

So funny and maybe a little ghetto-fabulous! LOL

~EM

Going Out With A Bang!

Yay for Saturday! Ummmm, why is the weekend going so fast? I hope everyone had a wonderful Thanksgiving holiday and time well spent with family, too much food and maybe a libation...or 10 HA! So recapping Thanksgiving, we drove over to John's cousin's house for the day and spent the day playing whiffle ball (yes, we have enough family to make two full teams and fans to cheer us on), knock-out, bocce, corn hole and eating pretty much all day long. But we had so much fun getting to visit everyone. John's Aunt Terry was campaigning for cash to go buy scratch off lottery tickets, which I thought was hilarious and "worth the mention". Ten years from now, this will be funny as hell to look back and remember her walking to the gas station with about $50 of donations, a couple of kids under the age of 5 and a handful of lotto tickets. Have I mentioned I love this family! Never a dull moment and I would NOT change a thing! I'll tell you, I had planned with the best of  intentions on taking all these great photos on Thanksgiving and posting them for the family and ask me how far I got with that???? Absolutely nowhere would be the answer. So FAIL... just put it on my tab. As a matter of fact, these were the only pictures of my own kids I got! What kind of Mother am I? Thankfully... John's Godmother to the rescue! Ginger took lots of photos and is going to send them to me soon! Whoo! 

                                                    

So obviously as you can see above, Thanksgiving was winding down and we were on to the next thing. I feel like we have been running the 100 meter olympic hurdles all weekend! Friday was spent doing very LITTLE black Friday shopping mainly because I am an online junky shopper. Seriously! I need an online shoppers support group ha! But I'll argue my case for a second and say, when you have two kids that have minimal attention spans for comparing "this to that" for Christmas shopping, they don't last very long! I know all you parents can feel my pain here! And on the flip side I can shop online ALL day long and they can play at home. It's a WIN WIN people!!!

The monkeys had finally started to get over the "funk" we have been fighting all week (praise the LORD), so last night we decided to head to the zoo to see Santa and the Zoo Lights (kinda becoming a cousin tradition) Even though we were missing a couple of cousins due to, ehhh sickness is a good way to put it. 

Disclaimer*** Secretly we take the kids to the zoo lights to see Santa because we all get a great LAUGH out of the terrible face that someone always produces from seeing the big guy in the red suit. It's like a cheap thrill for the adults HAHAHA! And boy this year was no different. Miss Ella delivered like a champion! (See terrifying face below as I giggle)

Ha!!!!! I'm so sorry but this picture is hilarious and worth a thousand words. Auntie Ericka loves you Ella!!!! So with the terrifying pic, here's a few more of the fan with "happier" faces. 

Big Christmas tree at the Zoo entrance

Hallie and Ryan, best friends! 

Joe and Kristen

Me and J :)

Jackson and Ella tuckered out!  

Checking out the tree!

Sweet smiles, but double trouble!

Today we are headed to Maryn and Annie's baptism along with a little football later tonight. Go Irish!  Rounding out our weekend, I'll make the extremely fast mention that today is my last day in my 20's! Woah and yikes!!! Good thing I fully loaded the weekend with lots of great family time and love before I celebrate the dirty 30 tomorrow LOL..... Oh well, what is it they say, 30 is the new 18? Ok, yeah I'll go with that. Mentally I feel about 12 most days, so that HAS to count for something right? 

What a blessed and great weekend we are having so far, my cup runneth over!

Going out with a bang... goodbye 20's, hello older and wiser! (HA, yeah right) 

~EM

  

Good Things Come in Small Packages

Happy Thanksgiving eve! My mind has slowly started migrating towards "holiday mode" and man am I ready for the break! Since Jackson didn't get to go to school all week this week, (thank you viral infection) his sweet teacher sent home a small care package of all of his projects for Thanksgiving. We  have an abundance of cutsie art goodies including a pumpkin, a handprint turkey placemat, a headdress and Indian t-shirt,  complete with his Indian name "Cow Jackson" on the back (I have no idea where he came up with that one LOL) and maybe most importantly, his vision screening results from LeBohneur. 

My husband (God love him) is pretty much a blind bat without his "eyes" otherwise known as contacts, so I was expecting the possibility of glasses in our future for Jackson. Much to my surprise however, he is 20/20 in both eyes! Whoooo! I know that sounds so simple and maybe somewhat silly, but since we are racing the Indy 500 of tests these days, these are the first "test" results that we have back that have been different than what I expected and we'll take it! Our OT results are in as well, but I still don't have a copy of those (go figure) so I'll be on the edge of my racing seat until Monday for those results.

As we ski down the slope to being fever free in our house, (YAY!) tomorrow I plan on devoting my entire day to being thankful for relaxation and hugging the necks of family members that we haven't seen in a while. Good food, laughter and love.... that's what I look forward to this Thanksgiving. Wishing you all a wonderful Thanksgiving holiday weekend! I'll be posting.....

I can never have too many kisses from this little man!

Cheers!
~EM

Finding Peace....Giving Thanks

Today I took the monkeys to the doctor to see if we can try and kick the sick. Two hours later and a finger poke or two and we have a nasty, make that two nasty viral infections. Yummy. As they were sleeping today, I was working to with the lovely sound of two little chainsaws buzzing heavy at work. (ha) At least they were sleeping together though. 

Poor pitiful babies....(yes, I took them to the doctor in their pj's don't judge me)

           

 

As far as results go today.... SURPRISE! A whole lot of NOTHING. Wah wah! Don't be too shocked folks, medical test results and their timing are like weather forecasters. Always predicted but hardly accurate. Sooooo until tomorrow for more results I suppose (and hope). I have only called harassed them twice today anyway. I might have to start hitting the *69 or whatever that code is so that my phone number won't show up so they'll actually answer me because I think they have memorized my number. I'm sure they argue over who will have to answer my call "this time". HA! 

As a pretty eventful or ummm uneventful Monday at the Milford house winds down I do have some sad news to share. This afternoon I was catching up with a dear friend, to be told that another wonderful and dear friend that I have known for many years has passed away. Yesterday would have been his 30th birthday. He went to sleep and simply never woke up. Hard to believe and shocking for sure. I have to say after I got off the phone today, I had to call my Mom for a small breakdown and lots of tears. How lucky are we all to have each and every day we are blessed to have? Pretty lucky and fortunate I think. I only hope my dear friend is resting peacefully above and that his family is finding peace through their all too soon loss of their son and child that was loved by so many.

So in his honor, I give my thanks and offer peace and love to my friend that will be missed dearly. I am happy, grateful and thankful to tend to my sick peanuts and because he always made me laugh and smile.... I'm thankful to obnoxiously cheer from my couch as the Grizzlies hopefully fry the Nuggets in tonight's game. Don't take your days and loved one for granted!

Life is not measure by the number of breaths we take,

But by the moments that take our breath away. 

                                      -Anonymous

Rest in peace my friend. I love you and know you have gone to a far better place. As I cry....

~EM

Sunday Not So Funday

Two monkeys with two fevers.....ahhh that's not how I wanted to start out my Sunday. Oh well, I guess we'll take today to really "rest" since Sundays are suppose to be a day of rest, right? Hoping the monkeys are back to normal for school tomorrow, the rest of my day will be spent doing laundry, cleaning and de-germing the house and getting stuff ready for the week. So much for that whole idea on resting, guess I should know better. 

A positive of today is that today is my sister or as she's better known "Auntie Auba's" birthday! (don't worry sis, I won't say your age :) And although Jackson was running a fever this morning he squeaked out his rendition of "Happy Birthday" to Auntie Auba (complete with Cha-Cha-Cha's between every line HA!) Hilarious and yet pitiful too. 

As Jackson's test scores are still setting in, I think I have 3 things I am debating. #1 I am starting to put Friday's scores into my brain folder: plethora-o-info for  Jackson, #2 I am starting to focus on what the next scores (fingers, toes and all things crossed) hopefully coming tomorrow will be. I wonder what they will reveal? Will they be a pleasant surprise? Will I have round two of picking my jaw up off the floor again? Either way, it's just one more step in the right direction. And #3 and maybe the most important, how do I begin to try to make Jackson understand what all of this means? Of course he realizes he goes to therapy, but does he know why? I highly doubt it. Maybe in movie terms since that's relatable for him?

Like the journey of the "yellow brick road"? You are headed to that magic wizard that can grant all your wishes but along the way.... LIONS and TIGERS and BEARS oh my!... but just like in the Wizard of Oz.... those lions, tigers, and bears end up becoming not feared but welcomed. That's what these test scores are starting to turn into. Yes, they scare me (Jackson probably won't care about the scores really or even understand), but I sure am thankful for them because without them, we won't reach that magical wizard that can grant all of our wishes! (call it dumb or silly, I guess that's just my mind making it all relatable for Jackson if I try to explain things to him) I also need to decide if he is even ready to hear my "attempt" to explain these things to him. I can just see it now... A 5 minute discussion (at the MOST, and I'll be lucky to get him still for two minutes), I try to explain things like a "movie" or something relatable to him and then Jackson's reaction "Cool Mom, can I go watch that movie now?" (insert MOM FAIL) Ha... but it will be funny and I'll be ok even if he has no clue what I am trying to tell him.  

He had a hard night last night as we tried attempted to play a game with the kids. Just as playing a family game is simple for me and you, it's like asking Jackson to run the NYC marathon. I won't go into that struggle, but as the journey continues I'll talk about Jackson's habits and "super powers" he has been blessed to have. :)

Hoping you all have a great week and blessed Thanksgiving! Meanwhile my little dude is trying to kick the fever......

~EM

What's Your Age???

Hello loves! Yesterday was not the happiest of Fridays, but as always tomorrow is another day and today has been great! Hallie and I have been to a make-up open house (yay) we went to a crafts fair at our church, we are making Christmas lists, watching football and playing games with the kids. In other words a good family day for a Saturday. This weekend is the first weekend in a VERY long time that we have not had anywhere to be or anything to do. Can I get a hallelujah!?!

In other news, we have more test results. Long post here, so grab your wine and read on.....

Finding the words at this moment is hard. I feel as though I have a case of writer's block in trying to get the words out - even though what I have always known has now been confirmed on paper. Make that NINE pages of confirmation. (I am now starting to see why it takes so long for these tests and the results) 

So, on to (or back to), October 24th....another testing day. We started the process for Jackson's Occupational Therapy (OT) assessment with a parent interview, the OT therapist doing an interview with Jackson and then the actual testing. I also had to fill out a profile for Sensory Processing Disorder (SPD) and Developmental Profile Test (DP-3). And by fill out I mean FILL OUT a profile. You know when you buy a house and it's closing day? Yeah... imagine that stack of pages as you sign your life away only apply to a six year old for testing. I guess I see it as another signing day to "buy" a better future for my sweet Jacks. I thought I would NEVER get through that packet!!! I could have published a documentary of Jackson's life there were sooooo many pages, ha! But again, all so worth it if we can get to the light at the end of ever so dark tunnel. 

So, testing begins... I didn't get to go in for this test like I did for the speech, language and hearing tests. Instead, I got to sit and wait and watch the clock tick by. OMG!!! My nerves were shot and that hour and a half seemed like eternity! (I swear, paint could have dried faster that day) The testing was finally completed, I did my interview part and we left. Ms. Jackie (our OT) said she would have the results back to us in a couple of weeks or so. My interior monologue kicked in...."Weeks? Really? Ugh!" My response out loud was a little more cheerful and along the lines of: "Ok, thank you so much for seeing us and we'll see you soon", along with a grateful sigh of relief. Another set of tests to check off the list and the waiting game begins yet again. Anybody wanna contribute to the "Ericka needs to buy more patience fund?" LOL 

Finally on November 13 (almost 3 weeks later, yes I counted) and we have some results. I thought I was ready....I mean I was ready....I mean I really wasn't ready, was I? My head was a wreck, my heart was pounding. So I get the call, get a few results, continue with my night with nothing really "hitting me yet" and we were scheduled to get the "hard copy" of the results on Friday, November 16 (yes that would be yesterday... and in case you missed how great my day was yesterday, you can read it here). Jackson had speech therapy as usual last night and meanwhile, I had hard, down on paper, pretty (or not so pretty) graphs and charts, recorded results. In Jackson's case, we are doing a series of tests for a multitude of things. I have the results for the Developmental Profile (DP-3 Test) so far. The rest of our results will come on Monday or Tuesday (or in medical time, sometime in 2013.. HA!)

I'll give you the easy to understand run-down as usual. The DP-3 tested Jackson for the following..... Physical Development, Adaptive Behavior, Social-Emotional Development, Coginitive Development, Commincation Development and then  General Development (this is like a composite score of all the other tests combined)

The easiest, most understandable terms I can put these results in is to say that for each of these tests, they give you an "age range" that your child falls into for each test and then an overall General Development Diagnosis. So I review the results: 

            Tests:                                                                                                 Age Equivalent:

Physical Development (carrying objects, jumping, etc.)                                           3-6
Adaptive Behavior (i.e. how make a bowl of cereal, daily life habits, etc.)               4-5
Social-Emotional Development (expressing needs, interacts/plays with others)    3-10
Cognitive Development (what's real/not real, memory, etc)                                     4-2
Communication Development (verbal/non-verbal skills, etc)                                    5-1

Ok, the first one- physical development- ages 3-6? That's not too bad right? Keep in mind he is now 6 years, 6 months (yes they record the months when they test) So I thought the age range of 3-6 was kinda wide, so I asked about the range. WRONG. SO WRONG. 

That was age 3 years dash 6 months. (Cue, my nervous stomach falling from my throat to my FEET!) I know the look on my face had to tell it all. I was shocked. Jackson turns 7 in May and as you can see above, each test score is well below the age of 7. He's 6 and a half and physically 3 years and 6 months? Woah. I almost for a second couldn't wrap my head around that. I wasn't expecting it to be that bad low for any of the tests. I honestly thought his communication would be the worst and it was the best! Phew! Need a deep breathe at this point. You can read the rest above as the same... the first number is the age in years and the second number is the age in months. 

So for his General Development he is: Developmentally Delayed (by years in every category). I knew it, I just hadn't seen it. Seeing it makes it all come full circle. It's hard now to even type it all down. I needed to just take it all in yesterday before I shared it. And although this was the outcome for this test, I don't really want to cry. I want to FIGHT. Fight for him to do better and improve. Fight for him to develop more and more every day. Clearly, we have a ways to go in working on Jackson's development, but we will get there! We have a plan to work on at home, therapy and school for the next 6 months and the DP-3 test will be done again to see what kind of improvements we are making. And he will improve! I firmly believe that. I am still letting all of this sink in and still not sure if it has completely hit me, but we'll continue on the path of nothing but success. There is no room for anything but improvement for Jackson and I won't settle for anything less. 

As it all sinks in...... 

~EM