Retain or Refrain? Today Autism... I hate you.

Woah. The entire month of February got by me and all I could squeak out was one measly blog post? Well, not that I owe anyone an apology, but honestly I wish I had written more. So I guess all I can say is I'll try to do better this month. Last month was not the best in the world in my book. I lost my grandmother, I have a few other personal things going on and I have been working a lot lately. But the work is a great thing! I really enjoy my job, love the people I work with and I am grateful for the opportunity to learn and retain so many new things along the way. 

Which brings me to that word.... retain. As we all learn things, we retain the things we learn right? Or at least we retain bits and pieces and maybe after a second run through we retain even more, well hopefully. The point is we learn. We learn when we are babies, we learn when we are kids and we learn as adults. Heck, we even learn when we are old. And all those things we learn give us the knowledge and empowerment to pass down all the information we have retained over the years to our kids, grandkids, friends and sometimes even strangers. 

Knowledge is power, but retaining knowledge is most often easier said than done. So easily are we distracted by the television, the text message on our phones, kids running rampant through the house, the dogs barking at nothing but their own shadow. Even in the most absolute silence, it can still be hard to learn new things. It takes focus, time and dedication to the task at hand. I'm not going to promise I was the best at any reading comprehension test in school and that even now I still have to read things two or three times before it really sinks in. (don't lie, you know you have to too) But at some point I do learn. I don't give up and I keep going until I feel that I have accomplished what I wanted to. That's easy for me to say. 

What's not easy for me to admit is that damn (excuse me, I'm a little angry tonight) word... that stupid scarlet letter "A" word is like a freaking curse on the retention meter. Today. Right now. I HATE YOU AUTISM. How dare you. How dare you keep my sweet Jackson from being able to learn. How dare you make it so hard for him. (Yeah, this would be one of those pity party, feel sorry for myself posts so read on or don't - I have to get all this out) How dare you always rear your ugly head and make him struggle. 

Simple words that he should be able to somewhat easy for him retain by now. Words that come home every week. The same words with only one or two added each week. Shouldn't be too hard right? Well it is. It's painful. It's a struggle. It's an all out WAR just to get through that list some days. And you wanna know the crappy part? It's like the refrain of a song. See that's the part of the song that you always remember, the part you retain and why? Because it's repeated over and over and so you remembering the refrain is just easier. Sure you can fake it and mumble through the verse. But when the refrain comes on, it's like a full on concert and you know every word. That's how Jackson retains these words. They have repeated themselves so many times that of course he remembers. As long as they go the same way, every time. Just like the refrain. So really, is that learning? Nope. That's called the refrain. Memorizing the word list in the order that they come home in the same folder the same printed way, and that's how he knows them. But did he really retain them? Nope. Mix them up and mess up that "refrain" order and he barely makes it through the list with heavy coaching and a LOT of patience.

I sat and watched my husband trying to help my son tonight. I sat and watched Jackson struggle, but John too. The fact that Jackson has ADHD doesn't help us on the focus meter either, but watching two people you love both struggle in two completely different and heartbreaking ways is seriously misery. I know that children with autism struggle. I know that being autistic presents it's challenges in so many environments and in so many ways. What I wouldn't give to see the world through Jackson's eyes just for one day. To know what it's like to see things the way he does. I can't even begin to wrap my head around that.  Then to see my husband. To see him struggle with frustration. To see it in his eyes that he too is heartbroken that it's so hard for Jackson and right now it feels like there is NOTHING we can do to change any of that in this moment. John would and will never give up on Jackson, but tonight he had to just walk away. And I know he walked away because it is frustrating. But I also know he didn't want to take that frustration out on Jackson. I don't blame him at all. I think he did the right thing actually. Sometimes its better to walk away and just let your other half take over, because as parents, we too can become overwhelmed. We are also not alone, so I could tell John was leaning on me to take over, so I did.

Yes, I am angry. Yes, I am frustrated. Yes, this is one of those days, that I can't take much more. I just want to punch something. I want to take all my anger and frustration out. Out on anything but Jackson. I just have to get all of this off my chest today. I never promised that all our days would smell like roses. In fact, today just stinks. In all my positive hopes and dreams for Jackson, there will come some struggle. Unfortunately this is one of the days that is not easy. I know things will get better and I do try to stay positive 99.9% of the time, but today I am taking the .01% to put out there that every single day is a fight. A fight for a better tomorrow. And though maybe today is getting the best of me, it's only today. Tomorrow will be a new day. But as I mentioned a long time ago when we started Jackson's journey with autism. I am putting it all out there. The good. The bad. The ugly. And I'm here to tell you people - learning with a normal mind is not easy. Learning with autism is an entirely different ballgame because you are down 10 points before you ever start. Retaining the little things that come so easily for the rest of us, is like scaling Mount Rushmore for Jackson when it comes to retaining anything he learns.

Singing my refrain today for sure....

Today. Right now. I HATE YOU AUTISM. How dare you. How dare you keep my sweet Jackson from being able to learn. How dare you make it so hard for him. How dare you always rear your ugly head and make him struggle. 

~EM

Can You Turn on the Water Please?

Ok, normally the whole "turn the water on" line comes with the general thought of someone going "tee-tee" and needing the water on to go right? Nope. Not for us. I'll admit that all things autism have taken a backseat on my roller coaster the last two weeks. First, my grandmother passed away on Thursday, February 7th. She was 98 and god love her, she had one long and awesome life. Exactly a week later on Thursday, February 14th her sister passed away. (Happy Valentine's Day, huh?) Check please! That's enough of the family passing away for a while if you ask me. Speaking of Valentine's day, I hope everyone had an enjoyable Valentine's day this year. I'll post my cute idea that I made for teachers gifts this year when I get to it. (I need to add that to my to-do list or it will be Christmas before I post it, ha) What did we do for Valentine's Day? Absolutely NOTHING! We literally went to bed and slept and that was perfectly O.K. for this exhausted Momma. And there you have it... the recap of my last two weeks in about 6 sentences.  

Back to the point of this post. I have been a little M.I.A from the blog world the last few weeks, but cut me some slack, it's been hectic! I kind of feel like things are getting back to normal though. John's out of town for work until Friday (weird that's what I consider normal isn't it?) and the kids and I are back to my drill sergeant ways of having things on a list and checking them off so we can survive til' the weekend. Sooooo I got back to researching autism and looking for new reading material and resources, not to mention making my lists for the city schools application for therapies they offer to private school children with disabilities (who knew right?) but that's another post (dang make that two things to add to the to-do list). Tonight I was researching autism and sleep- or lack thereof. Jackson often times has a hard time falling asleep and will sometimes lay in bed awake for hours, yes hours before he finally conks out. 

He then wakes up the next day with bags under his eyes and super lethargic to get moving in the morning. Sure doesn't speed up the process in getting ready for school either. So I wanted to see if there was anything out there to help with the whole "sleeplessness" that he seems to struggle with besides a dose of melatonin every night. Meds are not my first choice in helping him so I am always looking for other ways to achieve the same thing the meds do, well.....minus the meds. 

I came across several home remedies, do this, tried that's of things parents, doctors and anyone remotely internet savvy has posted about on the subject of autism and sleep and the reality is well, kids with autism just have a hard time sleeping sometimes! From weighted blankets to back rubs to black-out curtains, there were lots of suggested aids. I did find that some people recommend noise machines, sounds, etc. So I thought, what the heck. I got on my spotify account and started searching "nature" for any noise-making-theraputic-nature-sounding-ish (that's the technical term there :) uhhh music that I could find. And I found this waterfall earth track that's about 4 minutes so I added to a playlist for Jackson, put that sucker on repeat and told him to lay there in his bed and just listen to the water. 

Once he is asleep, he sleeps like a ROCK (no idea who he gets that from - Dad), but until he falls asleep he hears every creak and crack and gets distracted by even the heat cutting on in the house. It really sounded like a huge faucet on full blast with the volume so loud. But he seemed to lay there and listen and so I left him in his room with faux Niagara Falls, HA! I came back 10 minutes later to find... A SLEEPING BOY! Whoo hoo! Wish I had thought of this about 3 years ago to help him get to sleep faster! Who knew the simplest thing would work for him. 

I am hoping this will be one of those little victories we can check off the list of "things that help with autism" for Jackson, so we'll see if it has the same affect tomorrow or if he gets bored with the whole pretend waterfall. Since I've recently been surrounded by all things "life" that are sad and hard to deal with lately, I thought I'd post on a small victory of a happiness. A sleeping boy and a happy Mommy.  

Fingers crossed for continued running water and a sleeping boy. 

~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

It all happened so fast

For such a long haul process of insurance company debacles, answering machines and more paperwork than I care to admit that I have filled out, our appointment today was anything but a process. There is a good and a bad to that. Scratch that. There is a good and a shock to that! But before we get to that, I feel like it's important to record our experience leading up to this morning.

Last night I was on Skype with two of my besties (and btw we need serious chat connection help, HA) After we finished up I got the kids ready for bed and Jackson was unusually really awake last night. So awake that it was almost 12:30am before he finally conked out.

Also playing the role of insomniac last night, 2am rolled around and I found myself tossing and turning. Staring at two little monkeys that sleep with me when our sweet Daddy is out of town for work. I finally fell asleep and got up this morning to get everyone ready. My hands were literally shaking as I was brushing my teeth, my neck was hurting and my body was stiff. Translation: I WAS STRESSED. I have known for a long time that this time would come, but today came quick.

We dropped off Hallie and off to Midtown we went. Once we got to the office, I was asking someone for help on which floor we were headed to and little did I know, my little monkey was already on the elevator and the door shut before I could stop it!!! Seriously!?! Thank goodness we were early and had some extra time, but more importantly where was my CHILD? Well... he took a trip to the 12th floor where a nurse found him and grabbed him, stuck him back on the elevator and brought him back down to the security desk before I had too much time to really PANIC. Of course Jackson was giggly and couldn't have cared less that he took a trip on his own. I was just thankful he didn't pull a typical stunt of hitting every floor in the elevator and causing a full blown search party this morning.

So, we finally head to the 14th floor for our appointment and the wait to be called back. Jackson did NOT like the office or the place so he was laying in the floor...whatever. One small comfort was he wasn't the only one laying in the floor or lingering in strange corners of the office. I'm pretty sure everyone in that waiting room today was there for something close to the same reasons we were. We finished up about 2 and a half hours later, but it seemed like five minutes. The whole appointment and time with Dr. Eastmead happened so fast, almost like your wedding day where you are there but almost out of body and before you know it your day is over and all you have is the blur of memories you created along the way.

I'll kick in the buzz kill here and say I am not quite ready to spill the beans on our appointment today. I need some time for our visit with Dr. Eastmead to sink in. I'm not sure how long it will take me to divulge it all, but we do have results. The marathon is finished, the race is over and together Jackson and I held hands leaving that office. We crossed the finish line.

Today is bitter sweet. It's the end to a long fought battle and the beginning of the rest of Jackson's life. Stay tuned for the results, but right now, I just need time.

So proud of Jackson and so happy to be his Mom. I'm a lucky lady...
~EM

It's Time.

I'm a bag of emotion today, so bear with me. I need to walk down memory lane for a minute, so grab your vino and come along. Let's rewind some years ago to May 22, 2006 at 9:54pm. After 27 hours of labor and  an emergency delivery... a 7lb. 7oz., 19.5 inches long blonde hair blue-eyed baby boy was brought into our lives forever. My Jackson. Our Jackson. One of my two sweetest blessings in my life. This photo was taken just after he was born. I can think back to that experience of delivery and let me say it was and EXPERIENCE! This isn't going to turn into a TLC Baby Story so we'll just leave that at that and just say that I am so thankful he is in this world with us and a beautiful healthy little boy. It's so crazy to me to think that day is fast approaching 7 years ago. 

I knew that day had changed my life but I don't think I ever fully understood until recently just how much God really works in mysterious ways and that ultimately, HE is in control. If anyone told me that day on May 22, 2006, that we would be where we are today, I would said they are nuts. 

What I am learning is that he is destined for so many great things. What will he be when he grows up? What mistakes will he make along the way? What will he teach us as we live life? I don't know. And I don't care today. Today I am just focusing on the present. Today is what my life is about. One day, hell, one hour at a time is all that matters to me right now.

The time has come for Jackson's neurology testing to begin tomorrow with Dr. Eastmead with the Memphis Neurology Group. The day we have waited for, for soooo long. I have heard absolutely wonderful things about him but I'm not sure I am ready for all this. I mean we have been through, denial, anger, questioning, fighting for years... not to mention the best stage of all and that is acceptance of where we are today. Acceptance of the present. And although I am at the stage of acceptance, I am scared. Tomorrow begins the downhill stretch - the final mile of the marathon we have been running for so long. I know it will be a process and I'm sure it will take time to have results, I just hope I am ready for those results. 

Does he have some form of Autism? Does he have ADHD? I don't know, I'm not a doctor. Honestly, I have no IDEA what our results will be (I have my feelings and opinion of course), but I just know one way or another I am ready to hear them or at least I hope so. I don't know what my reaction will be. I don't know what Jackson will think when we talk about it. He may not even care (and probably won't). I don't know how our family and friends will react. The tunnel of "answers" is quite dark today for me. 

Shining at the end of that tunnel is a light though. That light is Jackson. Such a loving little boy and so full of mystery and wonder. I wonder what he is thinking. We have talked about the testing a little bit because I don't what him to be so overwhelmed tomorrow, but I haven't wanted it to be all we focus on either.  

Swallowing your pride and doing what is right for your child is not easy. It's never easy to think about learning disabilities and admitting to yourself that something is just not "all there" for your perfect angel. I think that is how all parents see their kids, as perfect. I know I do. Even though he is not a Soccer MVP or coolest kid in the class, I think my kiddo is pretty awesome. 

Sometimes when you need support and help, no one can help you fill those needs if you don't let down the walls and allow your vulnerable side to show. Today my vulnerability is out there and my walls are down. I don't ask a lot from other people, I certainly don't ask for any sympathy. 

Today I am asking for a prayers. Prayers of love and support and mostly for Jackson. 

Tomorrow we will take a full load of "ammo" (aka tests, artwork, schoolwork, teachers notes, etc) to this appointment and one more thing... our angel, Jackson's Grandma Peggy. I know she will be with us and I have found myself today leaning on her for support and asking her to watch over us tomorrow. As Jackson leans all the time, today I am leaning on the power or prayer and support. I pray for answers for Jackson, no matter what the answers are, just answers. I don't know what tomorrow holds for our future, but today I'm holding his hand  and tomorrow it's downhill to that finish line!

All my love and thanks for your continued support and prayers. I can never repay the support we have received, but just know from the bottom of my being, I am truely thankful.

EM

I love you Jackson and you will be great tomorrow monkey! Love, Mom 

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

Results Minus the Results

It's a chilly Tuesday. It's about time it felt a little more like ole man winter around these parts. (that makes me sound slightly country/ borderline heathen doesn't it? ha) Wanna know a secret? It may come as a shock, but I am developing a serious LOVE-HATE for doctors. I mean don't get me wrong, doctors are wonderful people who save lives everyday, but by golly they can't answer a phone to save their LIFE!!! Secret number two.... I have more test results for Jackson. Yep those ones we've been waiting on since ohhhh about 2 months ago. Good thing I've had Halloween, Thanksgiving and a few blog posts in between to keep my mind focused elsewhere.  

I am finding myself extremely frustrated today. Why, I don't know. Maybe it's just "one of those days". And quite frankly, who cares right? Since when is every day peaches and cream for everyone? If you are one of those people who claims to never have a bad day, stop lying to yourself, we all have a bad day. I feel like a little hamster on the wheel. Running and running, but that darn wheel isn't going anywhere. Hamsters have to be the most frustrated little creatures....

In case you are not fully on the spinning hamster wheel of Jackson's testing, I'll quickly recap. So far, we've had speech, hearing and language evaluations (more on that here) and vision testing. The second set of  OT tests includes the DP-3 (more on that here), Fine Motor Assessment and a Sensory Processing Disorder (SPD) evaluation. Still to go, Psychological evaluations and testing for Asperger's (which is a form of autism), Autism (all ASD forms), and ADHD. My goal in all of this is to hopefully have some firm answers for my little superhero, by April 2013. Just in case you are wondering how long all this takes, April will make 9 months of actual testing and about a 15+ months total of waiting lists and appointments to get some answers (not to mention our previous years of wondering, but hey, who's counting right? haha). Jackson will be just a few weeks shy of 7 by then. If your are a parent out there and you think you are a similar journey, or should begin down the same path for answers, get your rechargeable batteries, you'll be on the "spinning wheel" for a while, but don't ever give up on your little person! I firmly believe that their future depends on your actions today, so whatever you do, don't let that wheel stop turning for them, no matter how long you have to keep it going.

So on to the meat and potatoes of results. 

Jack's results today are the full Occupational Therapy evaluation to include the Fine Motor Skills Assessment and Sensory Processing Disorder. Are you still with me or did I lose you at chilly Tuesday? Ha. All these tests and details and foreign language medical terms can be a bit overwhelming, trust me I KNOW.

Without going into too many details and because I don't think I need to blast Jackson's every area of concern, I'll just recap the areas of testing and results. As you read these, should you find yourself thinking internally: "what does that listed medical term mean?", well... Google it friends. Here we go...

Motor Skills Testing:

• Musculoskeletal Observations
• Fine Motor Skills
• Visual-Motor / Visual Perception Skills
• Oculomotor Skills: 
• Tracking-results: within normal limits (YAY!!!!)    
• Scanning- results: needs therapy                    
• Convergence- results: impaired 
• Accommodation- results: needs therapy 
• Divergence- results: impaired
• Additional Visual Information
• Self-Help Skills 

Sensory Processing Disorder Testing: 

• Sensation Seeking
• Auditory Processing
• Visual Processing
• Tactile Processing
• Vestibular Processing
• Oral Sensory Processing
• Cognitive Skills

And so for all those areas of testing came these results: Occupational Therapy (OT) should begin in January 2013 for Jackson, with a re-assessment scheduled at the end of the school year to observe for improvements. Jackson should also be involved in social interaction group and/or a sensory processing based play group or camp. 

The the most important line on the whole darn report, MD (medical diagnosis) and here's what it says: 

MD:____________________________________

What? Huh? Nothing? What the.....? Okay, what does blank mean? Is this a bad joke because it's definitely not funny. Does that mean there is no diagnosis, yet he needs to have OT sessions? Does that mean we can rule out Sensory Processing Disorder? Does that mean there will only be a diagnosis after more tests? How can you go through all these tests and things for the most important line to be BLANK!!!! I mean if he doesn't have a diagnosis, fine. But write something on that line to say one way or the other. All those results with no real result!?! Ugh! Maybe my frustration today is starting to make more sense. I have called at least (no joke here...) 20 times to ask about this. 

Of course we will be at therapy this week, so I plan to pin SOMEONE in a corner til' they answer me why that little line was blank, so stay tuned and hopefully I'll be able to fill in the blank! 

I guess I can add this to the "speed bump count" on Jackson's journey. But don't worry, I'll get my answers. In the meantime, the plan is to start OT for Jackson at the beginning of the year and hopefully get scheduled for the psych testing next. 

Since that all important line was blank and I'm rather frustrated today; I'll just fill it in for them... 

MD: Milford Done

~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

Frustration, Spilled Milk & a Side of Gangnam?

Sometimes you just have to get it out. Today is one of those days for me. (I'll go ahead and apologize for the small pity party I'm throwing here) Jackson is still sick, day 12. I think a 4th trip to the doctor is in our future tomorrow morning. Poor baby. Whatever this "virus" is or isn't is really throwing him for a loop and a half. And if I am being really honest and candid, I'm SO OVER THE SICKNESS! Not only for him, but selfishly for me too. I'm tired. I want to pull the "I want my Mommy" card, too!  

After a long week of leaving school early for multiple days, missing school all week last week, a lot of sleeping and not a whole lot of eating, I am really starting to worry about my little man. We had therapy tonight and I guess I shouldn't be surprised but we still don't have any more test results even though they were ready before Thanksgiving.  UGH! The "printer" has been messed up at EDFTC or so I am told. I'm sorry but where is the customer service?? I have begged for them to just fax it, email it just any way they can come up with to get me these darn results and still nothing. Oh well, there's always next week, I suppose. Jackson's session didn't go very well today. I could hear the frustration through the door as he was trying to work on his speech. I guess I wouldn't have much patience if I didn't feel well either, much less on a Friday. Feeling helpless, I listened on the other side of the room as my poor little guy struggled and was anything but interested in focusing on his speech. Cutting his session 20 minutes short, his therapist Ms. Courtney opened the door and said he had reached his limit today. 

Game over.... Therapy-1, Jackson-Zilch.

As we continue on our journey for answers, I'll share some of Jackson's "habits". Frustration is putting it lightly for Jackson when things are going "according to plan" for him sometimes. If he spills even one drop of milk, he wants a whole new glass and the world is coming to an end. He has cried and cried over  his spilled milk, multiple times. So much for the saying "no use in crying over spilled milk" huh? He also tends to process things differently. You know how people ask you "If you could be anyone for a day who would it be?" I would want to be Jackson. I wish I could walk a day in his shoes, see his perceptions of how the world turns and really experience things the way he does. 

Often times he becomes very obsessive over things like movies, commercials, the weather, certain iPad games, etc. I mean really... if there was such a thing as the Jim Cantore School of Weather, I would have earned a degree in Meteorology by now! He is also very analytical, which I find interesting. He likes puzzles and he's really good at them. He likes to know how things work, taking them apart and putting them back together, things like that. He's very interested in, surprise... the weather, sports and scores and who's winning or losing. He' also critical when he thinks sports teams/players don't do well. He's very quick to say "they didn't do good, or they need to try again or that was a bad shot" and seldom is he interested in anything but winning. He doesn't understand the concept of losing. He can't lose at anything or there is a guaranteed meltdown. I think he ponders about how technology works. He's very good at using technology too, just ask my Apple iTunes account how easy it is for a six and a half year old to get past a password and buy apps. (cue the OUCH to the ole bank account)

He's also very in-tune with sounds or select words and repeating them, a lot and at totally random times. Like theme songs in commercials, just think "ba da ba ba ba, I'm loving it" from McDonald's. Phone numbers from ambulance chasers, I mean lawyers on tv. For all you Memphians out there....trust me, if anyone ever needed Nahon, Saharovich and Trotz, Jackson could recite Corey B.'s # on command!  Guess that "catchy" advertisement of their phone number is working for at least someone, lol. 

I could go on for a while about obsessions that he has, because there is a laundry list of them, but the last one I'll talk about tonight and perhaps the most hysterical to me is Gangnam Style! O.M.G. I mean, it's really quite funny. Don't even ask me how many times we have watched that You Tube video because I'll never admit to the actual number. I'll just put it this way.... he has watched that video enough to LEARN all the words and dance moves on his own. Now he's no prima ballerina when it comes to his dancing skills, but in his mind he thinks he's on Dancing With the Stars. I even caught it on video....hehehe!!!!

Don't judge my messy den of kids homework, toys and junk. Sometimes you pick your battles so cleaning that day wasn't at the top of my list (sorry). I'm sure this video will go on the list of "I can't believe my Mom did that to me", but I love to capture him in all his happy moments of glory and feelings of accomplishment! It's also "good Mom code" to have embarrassing moments of your kiddos right!?!

After a long week and an unsuccessful therapy session tonight, I'm looking forward to getting up our Christmas decorations this weekend and crossing my fingers for a healthy boy.

TGIF

~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

Lean for Love

I'm starting this post by saying first thank you. Thank you for taking the time to read our story. Thank you for being supportive and thank you for showing the love you have for others. People never cease to amaze me. It's amazing how people can be so giving to those they care about, love and sometimes even complete strangers. And I embrace all of you. I feel like I have always been a very giving and loving person to others in my life and others that I don't know, but it's nice to know that when I need the love, I feel it. The last 24 hours have changed my life. I have received more emails, phone calls, texts, Facebook messages, post comments and tweets than I can even count. People sharing their stories with me, sending love and encouragement, sending prayers, tears and most importantly support for Jackson! Not to mention, it's nice to know you aren't alone.  

Yesterday, coincidentally was John's mother's birthday. She would have been 57. And although I know everyday that goes by he misses his mother (maybe more than anything in the world) I know she is with us. I have no idea where my courage came from yesterday to all of a sudden think I am strong enough for all of this, but I'd like to think our Angel Peggy had something to do with that. I never got to meet the woman that my husband called "Mom" but I hear she was one AMAZING lady. What I do know is the kind of children she raised and the things she instilled in them before her she left the Earth for a better place. I hope that I can give that kind of love to my children like she did for her kids and any other children who's lives crossed her path. It has been over 11 years, but her presence is still felt by so many people today, that I can assure you. I firmly believe she watches over us and I think that sometimes she gives me the extra push of strength when I need it the most. I only hope that I would have made her proud. Weird how things in life line up sometimes isn't it? Sure does confirm for me that we are not steering the wheel of life.  

We have more test results that I will be sharing tomorrow after therapy. I know the results already, but I am getting the full "hard copy" report tomorrow and don't want to leave out anything that could be considered "cool medical terms" ha. I am anxious to get that report, just another piece of the puzzle we'll fill in tomorrow.  

My biggest take-a-way for you all today is - I think all this means we are onto something team! Just as my little superhero tends to lean on things (literally) most of the time, I am leaning on you. And I am asking you to lean back. If you are a parent (or anyone) that has ever had a question, wondered or just felt like you are alone on your search for answers... YOU ARE NOT ALONE. I am an open book. I will be honest, listen and return the love that you have given to my family and Jackson in such a short amount of time. Please feel free to reach out to me if you ever need anyone. I understand privacy and I understand being scared, but sometimes we all just need to lean for a little love. 

After all, this little guy leans for love all the time. 

Jackson and our sweet friend Ava at the
U of M Homecoming Football Game

Sending you all my love,
~EM

Jackson's Journey...4 Tests-1 Answer

To say that our journey will be a long bumpy road is an understatement. Once I catch everybody up to speed my posts will be shorter, I promise! Til then just hang in there with me! I have my feelings, opinions and guesses as to what I think Jackson is experiencing, but I'm not doctor so I'll keep my thoughts to myself on all the "things" I think we are going to ummm be working on to improve. :) All sugarcoating aside, we have some great days and we have some NOT so great days. I will tell you all, as any other Mom with any child, children teach you a whole new level of patience. Or they prove you have no patience. LOL As we have come to realize Jackson seems to have his own ideas about what "normal" means, I decided that Path 2 (from this post) was the way for us to go. 

Yes I have been scared. Yes I have been researching for a long time. Yes I need answers. Are you kidding, I needed answers yesterday. What is it they say? Good things come to those that wait?.... yeah that's for the birds. I have decided to take the early bird gets the worm approach instead. And by that I mean I have been a harassing, nagging, bugging and maybe even annoying parent to every doctor and person that I think we need on our side in order to get answers. After calling almost every single day for referrals and leaving more messages than I should ever admit to, I started getting called back. Ahhh Ha! Being really  extremely persistent can have it's benefits.  

So rewind to October 8. Our first appointment. Having been screened at school for speech and hearing and being told that Jackson had not passed, that came as no surprise. I was kinda relieved he didn't pass the screening to be really honest. It meant two things. One, everything we have been noticing for years is finally starting to surface with hard evidence. Two, I'm not totally crazy. So with those results, I decided we needed a second opinion and I was going to go armed and dangerous! I asked Jackson's teacher to take notes on things she noticed, habits, mannerisms, etc and being that ANGEL that she is, I had 4 handwritten pages of notes. YES! Ms. Beth you are awesome! I also took 12, yes 12 of the exact same drawing produced by my little artistic rockstar from the Lorax (love that movie). Now, I don't know about you but I can hardly remember what I did yesterday let alone days and days worth of things. But Jackson's drawings were of the same scene from the movie, same colors, same patterns and yes I have 12. One for every month I suppose! Ha. (more on his uhhh "obsessions" later) But we had waited so long to get an appointment, I was taking all the ammo I could get together for this. We went to the EDFTC (Exceptional Development Family Treatment Center) after getting a referral to be seen and we were scheduled for a hearing/speech/language evaluation.  Let me just also preface this with, every child that has any sort of special needs is never like the next child with special needs. One test for one child is not the same test for the next child. So for Jackson a Listening Comprehension Test, Oral Expression Test, Oral Composite Test, Hearing Test and Sounds in Words Test were performed. Ms. Courtney is our speech pathologist and Jackson was immediately connected to her. I have never seen a child be SO excited to see someone (that he just met). So I'll give that a checkmark and success for starters. 

After the testing was over, we left. I felt a sense of relief. A sense of success and even though we wouldn't have any answers just yet, I was happy. Skip to October 19. Test results are in and on a Friday night at 6pm, we headed in for some answers. FINALLY! So I won't go into the somewhat hairy fine line (somewhat foreign language) details, but we'll just talk simple "what does that mean in English" terms for now. 

Scores. So every child should be at a certain communication level for their age right? For Jackson (age 6) his scores came back and on the four tests he ranked: 4% for Listening Comprehension, 1% Oral Expression, 2% for Oral Composite and 11% for Sounds in Words.  (Yes, these tests are out of 100%) Diagnosis- Mixed Receptive-Expressive Language Disorder. The good news - He PASSED the hearing test! Whoo! What his disorder means is that for his age, he falls into the categories of needing intervention/has delays/language disorder, thus the diagnosis. So for the next year, we will have speech therapy sessions with Jackson to hopefully improve his communication and speech skills. After a year the goal is to have Jackson be in the 80% range for his age group. How awesome would that be?!?     

Also along with that initial evaluation came the recommendation (and me being slightly persistent) for additional testing. So following that we are on the road to becoming a speech superstar! 

The next steps would be to have Jackson scheduled for a OT (Occupational Therapy) evaluation for Sensory Processing Disorder. One down, lots to go. So our next test was scheduled immediately the same night of our first results. So excited for October 24th I couldn't hardly stand it. 

Eager and ready we'll be reporting on those results soon! Hugs your babies and be thankful that they have so much to offer and teach you everyday. How did I get so lucky to have this kid? 

  

~EM

Can Anyone Define Normal? –The Beginning of a Long Journey

Where to begin?

When you become a parent, your life changes forever. And no matter how ready you think you are, you are not. No one is every ready for the joys, struggles, sickness, memories or up’s and down’s that come along with being a parent. John and I have felt so blessed to have both of our little monkeys. I would not trade them for anything in the world. But becoming a parent also means a lifetime of responsibility and dedication and unconditional love to a little person that thinks you single handedly hung the moon. WOW. That’s a lot of pressure. But with that comes some of the best days of your life and hard decision making to protect them too. With all the runny noses and temper tantrums comes more hugs and kisses than you can count and enough I love you’s to make you feel like just maybe you really are their hero. And although life presents all these amazing times, sometimes life presents us with hard ones too. Which brings me to the entire reason for this post.

After a long debate on whether to just put it all out there I have decided well… to put it all out there. If you know me, you know I am a private person for the most part. I don’t speak about everything that is going on every minute of my life, for a million reasons. And not that it’s changing because it’s not.

BUT.…..HERE. COMES. THE. CHANGE.

I am not looking to gain the sympathy card here, more so I feel like I should share our experience so that if there is anyone out there reading this, maybe they can benefit from our story when it comes to experiences with their own children or anyone they know with children. Here we go.

So this is something that we have been fighting for a long time. The all ending question. Is Jackson “normal”? The answer to that… what the hell is normal? I mean seriously. Does Webster’s even have a definition? John and I have always had a feeling that something was just “off” about Jackson since he was 2 and some of his behaviors were just not progressing the way they should, but weren’t really sure how to handle it or even if there was anything to handle. So starts our questioning.  Is he slow? Does he have delays? Is he speaking like he should? Do you think he could be partially deaf? Why doesn’t he want to play with other kids?  Do you think he has ADHD? Could he be autistic? Do we even know what autistic means? Are we just overthinking it? So what do you do? Let time pass? Then ask…. to be told “He’s just a boy, they take longer to develop, he’ll grow out of it and blah blah blah” Boy if I had a $1 for every time I’ve heard that from multiple sources I’d be a very wealthy person by now. For the next four years- yes I said years people… this is the feedback we have gotten.

And furthermore, not realizing it until recently, I am openly admitting I have been going through the classic stages of coping for those last four years.

First the Denial, no nothing is wrong, I don’t want to believe anything about my perfect little boy is different. Maybe even some denial of not wanting to deal with it if anything is wrong, and somewhat buying into the classic “he will grow out of it” line. That phrase is just like a bad pick up line to me- stupid, pointless and gets you nowhere.

Anger. And lots of it. Why me? Did I do something wrong? Is this all my fault? Could I have done anything different? Am I a bad parent? Why us and our family, why Jackson, anger towards Jackson because I didn’t understand, anger especially towards him being treated differently and bullied at times, anger with healthcare providers, anger towards doctors, doctors and more doctors. Anger at my husband for not feeling like he understands sometimes (even though I know he does). Anger towards myself for feeling like I can’t buy enough patience.  Anger towards other people for not understanding or seeming to even care in some cases. Anger towards him being held back at pre-school because he didn’t want to #2 for them (even though he would do it at home every day,  I mean some kids just like to take care of business at home right?!?) My anger over time towards the situation eventually led me in a different direction.

So bring on the Bargaining. Our first year of 4K . Loved our teacher, everything starts off just great. Then came the “if you will do this, you will get that” routine. Not sure if that was my cry out for him to have good behavior or a secret cry for help because I didn’t know what else to do at the time. Continue the bargaining with making the decision for him to repeat 4K for a second year in hopes that he just needs more time to develop. Keep in mind he has done great academically, it was more for social and communication reasons we decided to hold him back for another year…. BEST DECISION WE EVER MADE. Countless days go by and we are still bargaining, not sure if that will ever not be part of our equation, good thing I'm not striving for perfection huh?

Depression. Whoa….. who has time for that? I would never be depressed about anything. I am way too busy, have too much going on and only crazy people get depressed. I am happy, have a great family, wonderful friends, good home, job, etc. so why would I ever have any reason to think anything is wrong with me, right? WRONG. (kick back in the denial stage here along with the depression) It took me a long time to come to the conclusion that even though all seems ok, it’s really not. Taking a long hard look in the mirror I realized that whatever Jackson is going through is not “normal” and whatever the reason the affect it’s having on me is not the best. So, where do you go with that you ask? Well in my eyes, there were two paths.

Path 1 – continue as we were and hope that “he’ll grow out of it” (there goes that stupid line again)

Path  2 – stop listening to what everyone else is saying and start acting on what I know (insert hard  parental decision making reference here)

What would you do? That’s always an easy question until it really is you that has to answer it. How often we can all answer these questions for our friends and other people, but once you are the one calling the shots, it’s not that easy trust me. So I decided… and Path 2 was my choice. If there is any advice I could ever give any Mom it would be, ALWAYS TRUST WHAT YOU KNOW ABOUT YOUR KIDS and FIGHT FOR THEM WITH EVERYTHING YOU HAVE.

And that is what has brought me to the final stage of my coping. Acceptance. Even though it only took 4 YEARS to get to this point, can I just say I am so glad I am here. It’s like God himself just came down and took the bricks off of my shoulders and said, “let me carry those for a while”. And from then on I haven’t looked back. And so starts the journey to figure out what our sweet Jackson is going through and more importantly to help him the best I can. In an effort to have every memory of our experience and journey with Jackson, I have decided to start doing updates on our journey. What is it you ask? Great question. I have been asking that for years.

Our journey has finally started and it’s a long road ahead, but let me tell you something. The day I chose Path 2 was the day that changes my son’s life forever. This picture says it all. My sweet boy, making a thousand wishes from a dandelion with no fear and not a worry in the world.  My next post will begin explaining all about it as we are working on making our own definition of “normal”.

~EM