Update

I apologize for being so slack and not keeping this blog updated more. We went through a spell where Keeg, Pook's older brother was battling his health condition again that kept me busy. Then we had a family crisis and after that, I ended up in the hospital for a week and am only just getting back to my self!

We've had quite a few things happen in the last several months. First, I'll start with the chiropractor visit. We discovered that the top vertebrea in Pook's neck is slanted at a sharp degree upwards. This could, in fact, be blocking signals from flowing from his brain to the rest of his body like they should! This is big news for us.

You see, Pook's head has always been super super sensitive to touch/pain. However, from the neck down, he feels no pain at all. He's cracked his elbow when ice skating, and never once said it hurt! He sliced through the tendon in his pinkie finger, and never complained of pain! His neurologist has long said that he felt there was something blocking the signals that are supposed to flow freely between his body and brain.

So, can chiropractic help? We're hopeful that it can. So far, we have noticed changes in Pook, but have no way of knowing what is due to chiropractic and what isn't!

Now, let's talk about phonics. Pook still doesn't comprehend that each letter makes a distinct sound, or that putting those sounds together forms words. However, he is recognizing sight words on his own. He knows and can spell many words now, some of which are off, on, out, and exit. He picks the words on his own and once he says he knows it, he's retaining the information!! As you may recall, Pook typically gains new information but then looses it. Hopefully that's not going to happen anymore!

Also, Pook's memory has always been above and beyond, but now he can articulate the things he remembers even better. He has told us about events that happened when he was as young as 6 months old! He remembers details so vividly that there is no mistake that these are his memories and not something he just overheard. It's pretty spectacular (isn't God amazing!).

Pook also is starting to understand different emotions and the part they play in his actions. This is a huge leap for him and it's making things so much easier! He's started to express guilt when he does something wrong, and genuinely feels remorse for his actions that hurt others. There is still a significant delay in the amount of time between the actual action and his emotions catching up to it, but we're getting there and that is a start.

At this moment, it really seems that his Auditory Processing Delay is causing most of his frustrations. He acts on impulse, and then will cry for long periods of time upset about his action. He tells me, "I not want to do that, my body made me" or say that his "brain made me". My heart breaks for him when this happens. He's starting to realize that his actions have a bearing on others, and to feel that he can't control these actions is very upsetting to him.

He's only just now started addressing the issues he has resulting from the recent division in our family. He doesn't speak about his emotions, except to say that he misses Daddy. The rest of the emotions he discusses he puts on the other person. For example, if he was mad at me, he'd say "Mommy has a mad face". It can get confusing at times, but we're figuring it out!

Overall, Pook is making progress each and every day and I am thrilled! He's come a long way. One of his medial specialist told me recently that he'd have never come this far if I hadn't started his therapies so young. I encourage each parent to challenge any specialist or insurance company that wants you to wait until your child is older for therapy. Early intervention makes such a big difference. Fight for your child, cause at the end of the day, you're the only one that will.

OVERWHELMED in Holland

Today's blog is so intricately woven with multiple aspects of my life, that I'm going to post it on both Paths From My Soul and Paths From Pooks Soul. I'm pretty sure this blog rivals all my other to be the longest post yet.

I honestly don't know where to start. There is only one word to describe how I've been feeling lately...........

OVERWHELMED

I know that God is going to carry my family through this time as He has all others. My faith is not doubting. I just know that the journey through is hard and difficult. 

It's hard to believe all that has happened in 2011. I decided to come off all my prescription medications and now only take Ibuprofen and use Lidoderm Patches. I take tons of vitamins and supplements. I feel that I have a much higher quality of life, though the pain can be enough for me to consider ways to render me unconscious at times. I refuse to take immune suppressants, steroids, narcotics, muscle relaxers, or any of the other junk most docs try to pump me full of. Stopping all meds has been an emotional time for me. I still have so many days where I feel like I'm going through withdrawl. I never thought the negative effects would last this long. 

I've also started to have a significant worsening of my short term memory. I ask hubby each night to tell me what we did the day before, in an effort to jog my memory and keep the information where I can recall it. It does seem to help a bit, but the majority of my days are lost from memory. I write down everything I do in a calendar, in the hopes that I can recall it. Due to the memory lapses, I find that I often offend people I don't intend to. I have always been a person of my word, yet here lately it seems I find myself not following through on things I've said I would do. Not because I don't care and don't want to..........but because I don't remember. My memory loss has terrified me so much, that as soon as a thought pops into my head, I say it for fear of forgetting it. This comes across as so terribly rude and I don't know which is worse.......interrupting to get the thought out before it's loss forever into the abyss or taking notes every time I speak to someone (I do this with EVERY phone call, therapist and doctor visit, etc). Those closest to me have noticed the differences that have come over me in the last several months, but I think they are at as much of a loss as me. 

My physical body is going through an upheaval. If this hadn't happened so many other times through the years, I'd think it was due to my stopping the prescriptions, but I know better. The pain has started to settle deep within my joints. My Reynaud's is attacking me even though it's hot weather instead of cold. The shooting stabbing pains in my head are coming with more frequency even as my vision issues have resolved themselves. The strength in my hands are almost completely gone and though I'm mentally clear enough to drive most of the time (I do still have days where I end up completely lost on a road I've traveled thousands of times in my life), the pain that results from driving is agonizing. I'm hoping a vehicle in better shape will not be as hard to handle (the frame on the truck is warped and it always pulls to one side while driving, plus transmission issues require changing the usual automatic gears by hand). 

The housework is piling up and I can't stand looking at it. Keara is a champ at helping me around here, but I think she's completely overwhelmed and I regret that she seemingly has no childhood. Between her caring for her younger brother, caring for me, and helping me carry the burden of chores....there isn't much time left for her. Time for her to spend with me alone....that doesn't even happen anymore. 

Yet, honestly.....the most stressful thing in my life right now isn't even my health or my ability to do all that needs to be done. You see, I went on and on above because I hesitate to really reach into the depths of my being and write the part that is tearing away at me piece by piece. 

Most of my readers know that our 5 year old is Autistic. It's high functioning which is a blessing in that he can reach a much higher potential then many children with Autism. It sometimes makes it harder when dealing with other people because the vast majority of people assume that if you look "normal" then you should act "normal". I've witnessed this first hand myself. When I had to use my electric wheelchair, people treated me different. It drove me crazy at the time because there was so much I wanted to do for myself that others wouldn't let me. Other people's expectations for me altered because they saw me in a wheelchair. They had more compassion and were even willing to volunteer things like bringing us meals, helping clean the house, and babysitting in our home so I could get a break. Once I was able to walk around again, even though I still battled the exact same health issues and was still severely limited in my abilities, the expectations of  others jumped right back up to the point prior to my ever getting sick. This is where Pookie is. People look at him and see a bright, active child. Therefore, they expect him to behave like a typical child. They don't know that the evaluations that we've recently gotten back say that he has "mild to moderate autism", "impaired vocabulary", visuospatial issues, processing delays, severe sensory integration issues and more! Worse yet, many don't seem to care even if they do know!! They don't look at Pookie and see how far he has come. They don't see how much he really does care of how after he hurts someone, he comes and tells me he wishes that he never hurt anyone. They don't know that he cries beside me saying he wishes he were dead because his body does things he doesn't want it to do (this is due to processing delays...he acts impulsively because his brain processes the information to slowly and only afterward does his brain process the alternate ways he should have dealt with a situation). 

Don't get me wrong...........we have some really great, exceptional friends in our lives who are very supportive and understanding. They've made all the difference. 

Yet now (finally, the meat of this post), I don't think any of us know what to do with the latest diagnosis. Not of Pookie, but of my eldest son. You see, Keeg has, up until recently, been the perfect and most exceptional child. I know you think I'm biased (and I am) but there was just so much about him that was unique. At 2 1/2 years old, he taught himself to read!! I was teaching him letters and sounds and he already was reading Doctor Seuss books. By the time he was in Kindergarten, he had already tackled his first Isaac Asimov novel (not an easy read for many adults even). He was super bright when it came to intellect and I watched him carry on conversations with his medical specialist that blew everyone in the room away. I can not tell you how many times someone told me that he was the smartest child they'd ever seen. I was PROUD. It seemed like no matter all the wrong I'd done, I'd been blessed with a child that was an enigma. Keeg always battled some pretty severe health issues, but his behavior was always above and beyond. He was the child you look at in the store and stop the mother just to say, "You have the best behaved child I've ever seen". He was the child you told once and once only. He was the child who always seemed to know who was upset and would ask what was wrong. He was the child who always did his schoolwork, always kept his room clean, and always ate his vegetables. 

A year ago I started having issues with him. He was always reading. He'd read the tags in laundry, he'd read the labels on the cans in the pantry, he read and read and read. He could no longer complete tasks or chores because he stopped to read everything. I even caught him a few times reading the garbage in the kitchen can. He'd walk by and it would catch his attention so he'd stand over the can, peering in and reading. I would have to tell him over and over and over again to do something before he would complete it. He would tell me he didn't hear me, or didn't remember. I would ask him to complete a chore and hours later would be appalled that it wasn't done, even after he told me he completed it. He'd walk into the room, look around and dumbfounded ask me, "what else needs to be done?"  I was at my wits end. How could the once perfect child suddenly be this rebellious, disobedient teenager?? I talked to friends with teens and they assured me that this was just part of growing  up and eventually (albeit a long eventually) he'd outgrow his rebellious streak. How did I not see what was really happening? 

About 4 months ago, Keeg and I were home alone. I told him that I was going to give him a chore and I was going to observe his completing it. Each time he stopped to read, I would redirect him. He was to try his best not to read, and if he read something and I didn't notice, he needed to tell me. About  3 minutes into this, he was crumpled on the floor, tears streaming down his face, his hands pulling at his hair, and saying, "I can't do this! I have to read! I have to! I have to!" I sat, completely blown away. The agony in his cries froze me. Something was wrong....terribly wrong....and I didn't know what it was. 

I talked to several professionals I've become friends with through the years and heard lots of different ideas. I decided that the first step was to get him in with a professional therapist. Someone that would address the needs of our family and help Keeg deal with the stress he was going through. I got a referral from a friend and set up our first appointment. The doctor had me feel out a bunch of assessment forms online for Keeg so that he could review them before our appointment. When my husband and I went to meet the doctor, he handed me a scholarly article to read about Asperger's. Confused I looked at my husband. Why would he give me this when I'd already told him our youngest was diagnosed with High Functioning Autism and not Asperger's? The doctor let me know that the information wasn't for Pookie...........it was for Keegan. 

The foundation of my world shook. Reality started to spin and meld. I sat in the midst of the chaos, frozen in a warp that wracked my awareness of all. This isn't what I was supposed to hear. I was supposed to be told that he was ADD with maybe some OCD. That's what I was prepared for. Asperger's??? NO NO NO....my youngest son is on the Autism spectrum....not my oldest! I pushed myself to read the article he had handed me, floored to find out that it addressed how it's actually COMMON for children with Asperger's to not be diagnosed until they are in their teens. I managed to make it through the appointment, and back out to the truck. My first words to my husband after we pulled away was, "How could I have missed this?"

I grew up with family members and friends that had special needs. I went to college for Early Childhood Education with a special interest in Special Needs. I've volunteered, helped out and fund raised for various organizations that help with Special Needs. I've spent the last 5plus years studying Autism Spectrum diagnosis, Asperger's included. And then the lighbulb went off............how many times did I pull Keegan over to me while researching and say, "Hey, this sounds like you!"  

Looking back..........I missed so much. The way that Keegan never really cared much for affection. Yes, he'd let me hold him, hug him, and give him kisses as a child. But deep down I always felt that he was only tolerating it for my benefit. The way that his room always stayed so clean because he didn't really own much of anything. He would always ask me to give his toys to children that didn't have any. Proud as can be, we'd do so. It's only in hindsight I see that it was because he didn't care for the typical toys children played with. His room has always been minimal in decoration and toys. For as long as I can remember he's only wanted an alarm clock with radio, a lamp, his hotwheels and a chess set. Looking back, I can see how unusual this is for a 5 year old.....but at the time I just saw it as a sign to his immense intellect. Keegan has always been particular about his clothing. He has always preferred khaki pants and shorts after he went to a charter school that required school uniforms. He likes long socks with the tops pulled straight up his legs. Keegan never really had any sense of style, but being a single mom that didn't really have any other Dads to chat with, I just thought it was a guy thing. There were always gross motor skill delays and clumsiness...........he had really big feet and I chalked it up to that. I never noticed that Keeg didn't recognize personal space until he was older. When a small child sits down immediately next to someone, it's cute. It's not a red flag that he doesn't realize that people have personal space. Keeg has never known a stranger.....NEVER. It's not uncommon for his interactions with someone to start off with 20 questions. I just thought he was curious and trying to feed his intellect. When my husband and I married two years ago....Keeg had pretty much spent his life caring for me and his little sister (due to my own health issues). He'd been the man of the house. My new husband, his now step-dad, sat him down before our marriage and told Keeg that he was proud of him for all that he'd taken on through the years. He was proud of him for the way he took care of me and his sister. Now, he could just relax and be a kid! He could play and have fun. Once Keeg accepted this, play he did. My husband asked me then if I noticed Keeg's play. Did I notice that he played like a young child? Did I think there was something wrong? Did I notice that Keeg had gone from one end of the extreme (never playing) to the other end of the extreme (continuously playing)? Did I think it unusual that Keeg's imaginary play was immature yet intensely intelligent at the same time? Nope.........I didn't think there was a problem. He'd spent years taking care of me and his sister and now was just letting out all those years of pent up play. Besides, he was altering his play to match that of Pookie to help keep Pookie entertained. He just continued the same games when Pookie was otherwise entertained, right? 

I could go on and on. You see, I've had 3 weeks and 2 days since the first doc told me he thought Keeg had Asperger's. Since then we've met with a pediatric neurologist who has all but confirmed the original therapist ideal. He's scheduled the appointments necessary to get the "official" diagnosis. Keeg was admitted into the hospital for unrelated tests, and numerous nurses and therapist he came in contact with assumed he'd been diagnosed with Asperger's long ago. (My mind screamed REALLY? REALLY? REALLY? the entire time). A child life specialist told me that her brother has CP and mild mental retardation and that Keeg reminds her so much of him. She said their mannerisms are identical. She said this with the sweetest affection for Keeg and her brother that I was deeply moved, yet inside I could feel the vibrations resonating through my body as my brain screamed "WHAT? MY SON? HOW DID I MISS THIS?"

Thursday, Pookie went for another evaluation with a speech therapist. I had to meet with the OT there so when Pook didn't want to go back with the therapist alone, I sent Keeg with him. When it was time for me to meet with the therapist, she wanted to make sure I'd realized that Keeg had special needs as well. Again, my mind screamed "DID EVERYONE SEE THIS BUT ME?"

There are always times in a parents life that you feel like a failure. That there were things you missed, things you should have done differently, things you should not have done at all. Yet, I can honestly say that nowhere in my 14 years of parenting have I felt so totally off the mark. My son has lived with me for 14 years....his entire life....and despite all my knowledge and training, I missed that he has Asperger's. I don't care that it is COMMON for children to miss diagnosis till teen years...........THIS IS MY SON. My firstborn. It makes a difference somehow. 

Each day I make so many mistakes. I am trying so hard to change my perspective, to see Keeg as who he is and not what I always dreamed he would be. I'm trying so hard to realize that I'm in Holland and that Holland has so many things to offer (click on the blue word Holland if you don't know what I mean). I have to stop myself and apologize a thousand times each day because I realize I reacted to him without realizing his actions weren't intentional, that he didn't understand, and that he was doing exactly what I said just as literal as I said it. 

I try not to think about his future right now. Don't get me wrong.......I'm doing everything I need to so that he gets the best of everything and reaches his full potential. I know that he can still be and do anything he wants to and that Asperger's is not a limit on this. Yet, since before he was born I'd dreamed of his future. When he was 2 he told me he wanted to be a doctor and didnt' sway from this except for when, at age 4, he decided to be a missionary. He talked of working at NASA so that he would have the means to reach the goal of missionary doctor. Those dreams haven't changed...........but the paths to get there are forever altered. It's not a bad thing......... but change is always hard for us adults. Selfish as it is, my life was always so chaotic there were only a few constants I felt I could depend on and those were God and my children. That hasn't changed.....but for me to be the mother Keeg needs, I have to change my entire perspective and outlook. I have to let go of my dreams to visit Paris and find the beauty of Holland. Ironically enough, when I read "Welcome To Holland" the first time I didn't really understand the full impact of it. I'd known since I was pregnant with Pookie that something "wasn't quite right" and the moment he was born it was obvious he had some type of special needs. I read "Welcome to Holland" shortly after Keeg's initial diagnosis and suddenly it all made sense. 

I know that through all these things God will make sure our needs are met and dreams fulfilled. This is going to be a beautiful and joy filled journey. Yet, we all must mourn the things in life we have lost..............even when the door God has opened for us is so much more beautiful, amazing and breathtaking. 

"Official Diagnosis" and older child on the spectrum???

Pookie "officially" received his diagnosis Wednesday, June 22nd at aprx. 2:15pm. Although the doctor felt he was close to being diagnosed as having Pervasive Developmental Disorder with SO..........she said that due to a few "oddball" characteristics, he was getting a diagnosis of High Functioning Autism instead. 

Am I surprised? No. Is it still a blow to me? Yes. 

I'm not really sure why this hit me hard at all. Since Pook was a year and a half old, I suspected that he would end up with a diagnosis on the Autism spectrum. Although I went back and forth with specialists along the way suggesting High Functioning Autism, PDD, or Asperger's, we all knew he was somewhere on the spectrum. I've pushed for him to get the early intervention he needed with therapies and geared them towards Autism as I found these therapies helped him reach his potential. High Functioning Autism isn't a new concept for me regarding Pookie. I've realized a diagnosis on the spectrum was coming for the last 3 1/2 years. Yet, after hearing the "official" diagnosis, it was as if something inside of me fell flat. 

I've discovered that throughout the  years, secretly inside, in a place hidden from even myself, I was hoping. I was hoping that maybe the problem was my parenting skills. Maybe, somehow, I'd gone wrong with the third child. Maybe it was because I had health issues that limited me the first years of his life and his "oddities" was  a direct result of this. I hoped that when others said, "He's just spoiled" or "You let him get away with to much"........part of me actually hoped this was true. If it was me, then that could be easily changed and dealt with. If I was responsible, then his future was simpler. 

It wasn't me though. I'm not saying my parenting is perfect or that I've "succeeded" as a parent. Merely that my son's wonderful oddities aren't "my fault". With that realization, the landscape of his, and my, future has changed. It's not a bad thing. Just different. 

As I spent the last week thinking about Pook's official diagnosis and exactly what that means for us, I was given another tentative diagnosis for my soon to be 14 year old son. I went into the appointment expecting to hear that my eldest was possibly ADD or maybe that he was OCD. Yet, when the counselor suggested Aspergers, everything in my world froze. My brain sputtered and gasped for understanding. HOW?? He's almost 14 years old........how could I not have noticed he was on the spectrum? How could I have spent the last 3 and a 1/2 years researching Autism spectrum disorders and not have noticed? How many times did I draw my husband over while researching and say, "He, doesn't this sound like Keeg?" How could I have not made the connection? 

ASPERGERS......with this suggested diagnosis, the landscape of the future didn't change. Instead, the future moved to a far distant planet I never considered before. This just doesn't fit. Keegan taught himself to read by age 2 and 1/2. While I was teaching him letters and sounds, he was already reading Dr. Suess books and just didn't reveal it to me. By the time he was in elementary school he was reading high school level books. He breezed through math and grasped science concepts beyond his years. He learned how to play chess after sitting through one single game and spent the rest of the night beating adults that had been playing for years. He started working in college textbooks just this past year, at the age of 13. How how how could this be? 

Yet, the more the counselor talked to me and explained characteristics and signs of Asperger's, the more ti all seemed to fit. The lack of concept of personal space and how more often then not you have to remind Keeg to "back up" when he's talking to you. How he never seems to notice that a conversation has, or should have, ended. How he misses social cues, facial expressions, and has never been embarrassed, even when it seemed he should have been. 

So, while scheduling Pook's evaluations for increased therapy services, I am now also scheduling evaluations for Keeg to determine if he, in fact, does have Aspergers. Even though I can see the signs, and see the possibility, I know that deep down inside, in a place hidden even to myself, I'll continue to hope that it's just me. That maybe I haven't parented correctly and the oddities that Keeg is exhibiting are in fact a symptom of my poor parenting.

Until the "official" diagnosis comes...............

In the meantime, I'm going to continue to read "Welcome to Holland" over and over again. Tonight, I printed it and am posting it above my computer desk. Yes, the landscape of the future has altered and changed for our sons........but it's a beautiful landscape nonetheless.