Monday, July 29, 2013

A Tear in the Fabric

I haven't posted in so long. I blame Facebook for my months-long lack of creative writing and thought musings that are probably only read by my family, and even that is questionable. But I feel the need to write today. Maybe it's more of a way for me to organize my thoughts rather than share any profound revelations, but whatever the reason, I need to feel the keyboard at my fingertips and see my thoughts flow onto the screen. Maybe then I can make sense of my emotions over the past 48 hours.

Our flight home from the Dominican Republic had just landed an hour prior to my logging onto Facebook. We were in the car, headed home, after a week of fantastic vegetation beach and poolside where copious amounts of local rum may or may not have been consumed. In post-vacation mode and only half-conscious after a full day of travel with three exhausting kids, I stared at my Facebook feed in disbelief: Kidd Kraddick is dead.

As a lump rose in my throat, my immediate reaction was to assume it was another elaborate celebrity death hoax. Just in case, I Googled it. (I still can't believe Google is a verb.) Nothing. Nada. I breathed a sigh of relief - it must be a hoax. But then I checked Twitter. I checked Facebook again. Too many sources were reporting it true. Then the networks began to report it. It was true.... Kidd Kraddick was dead. How did this happen?? And why did I care so much?? I was (and still am) devastated.

I'll tell you why.

I started listening to Kidd at 16 years old, the second week he was on the air at KISS FM with then-co-host, Jocelyn White. For 21 years, he has been a constant presence in my life. I have spent most of my teen years and all of my adult life, sharing in his life, grieving with him, laughing with him, and crying with him. But mostly laughing. Kidd was a story telling genius. He could take a 5 minute semi-humorous interlude with a stranger and weave it into a tale so hilarious I found myself in tears from hysterical laughter. Phrases or words like "ridicilou" and "give the under-carriage a little how's your father" began creeping into my vocabulary. I felt part of a group; part of the cool crowd. I felt included. Mostly, I felt like Kidd was talking only to me.

Kidd was a constant in a world of uncertainty. The one thing that stands out the most to me about Kidd was his consistent presence. Save for the few weeks a year when he (God-forbid) took an actual vacation and I was relegated to listening to "best-of" shows, I knew that when I turned my radio on between 6-10 am, I would hear his familiar voice. It was comforting, almost like the soothing you get from your parents' voices or the voice of those most special to you. I came to depend on that more than I realized until just this weekend, when that voice was silenced.

Kidd had an uncanny ability of always knowing the right thing to say and the appropriate way to handle any given situation. I remember after 9/11, my husband was stranded in another state after air travel was shut down. I was alone and scared, grieving and trying to make sense of the death and destruction that had just been forced on our country. I remember turning on Kidd Kraddick on Sept. 12, 2001, and Kidd was addressing the attacks. He was just as horrified and confused as the rest of us, but somehow, he sounded confident and strong and made me feel safe. He brought normalcy to the most turbulent experience of my life. He handled the days and weeks that followed with such professionalism and consideration for the emotions of his listeners, many of whom were grieving a loss. When we were unable to formulate our thoughts and reconcile our heartache, he did that for us. He gave us tools to grieve with and and outlet in which to use them. He was a rock for myself and so many others.

Kidd made us care. He helped so many people learn to see the value in other humans, despite what their outward appearance might be. He enlightened us to look past the wheelchairs and chemo-stricken bodies, past the burn scars or deformities, and into the hearts and souls of the differently-abled and chronically ill. He made us see worth and he made us want to do more. He made us want to be a better society and he did this by leading by example. Kidd was at the forefront of multiple causes, many I'm sure we don't and might possible never know about. He fought for the less fortunate and encouraged when he could. He was a cheerleader for making a better world. He inspired and touched millions.

I had the honor of meeting Kidd on several occasions. I liked him tremendously. I know I speak for many when I say I feel as though a family member has died. I also feel like a part of my own voice has been silenced. Kidd spoke for me so many times when I couldn't formulate the words on my own. I will miss his presence and his outreach beyond measure and the percussion left by his loss will be felt by multitudes from all walks of life.

Godspeed, Kidd. Gone, but never forgotten.

Wednesday, January 9, 2013

Understanding My Son

First, let me give you a quick update that we finally had the ARD meeting for John and have his accommodations in place at school. I was extremely impressed with the district and all the individuals involved. They genuinely seemed to care about John's success and wanted to make every effort to help him achieve it. Every accommodation I asked for was granted, including many that I had not thought of myself. He has also begin receiving social therapy and organizational skills therapy. It has only been a month, but I can tentatively say that we have seen some improvement already. We still have far to go, but we will get there.

Now I want to take a minute and explain a few things about Aspergers Syndrome. Since John's diagnosis, the large majority of my friends have stated that they didn't know such a condition existed, let alone what it is. Please indulge me for a minute as I try and explain what exactly John has and how it affects him and our family. I will also give some insight as to how I came to suspect Aspergers in John and what led to our having him tested. Many of you have privately asked me about that, as well.

You can Google Aspergers and the amount of information that pops up is both overwhelming and confusing. Aspergers is defined as high-functioning Autism. However, there are several distinguishing characteristics that set it apart from typical Autism, making it a distinct diagnosis, such as social disabilities and high intelligence. Most Apsies tend to be quite cognitively advanced. Not all Aspergers symptoms appear with each child. Aspergers is much like a fingerprint. Every Aspie has the same basic outline and design, but the fine details and aspects of the syndrome differ with each child and are unique to that individual. No two Aspies are identical. Since you can read the science behind it on your own, I won't bore you; let me just tell you John's story.

What was my first clue?
When John was four months old, a time when typical (I purposefully use this word rather than "normal") babies begin to smile and react to the facial expressions and vocal intonations of those around them, John did everything he could to avert his eyes. He would look away from us and refused to make eye contact. He never smiled. He was completely indifferent to the emotions we expressed. I remember looking at my mother one day after we had, to no avail, attempted for some time to get him to smile at us, and asking her point blank, "Mom, do you think my son is Autistic?" John showed little or no reaction to happiness, kisses, smiles, etc. In fact, the only emotion he ever exhibited was frustration. He cried non-stop, all the time. And I mean all the time. My husband and I used to "joke" that if John was awake, he was crying. This lasted until he was close to 18 months old, when his language acquisition began to really accelerate.

One of the hallmarks that distinguishes Aspergers from typical Autism is language acquisition. Autistic children are typically very slow to speak and many require speech therapy and intervention to acquire this basic skill. Contrarily, Aspies acquire language more quickly than most children and tend to speak in complete sentences sooner than their peers. John was no different. By 15-16 months, he was stringing 4-8 words together to form complete sentences. At 20 months, he used the word "contraption" when telling me about his Bob Builder toy. It was at that moment, I realized my son most likely was not Autistic, but rather had Aspergers Syndrome. I will never forget it.

Another hallmark of Aspergers is the use of large or unusual words when a small one will do. They tend to speak quite formally as if they are at a business meeting or a fancy dinner party. John has consistently done this and continues to do so now. A few weeks, ago, I asked John if he was hungry. Most kids would just respond with a simple "yes or no". John actually replied, "No thank you, I'm not hungry right now, but I would care for a drink, please." Care for a drink??? His sophisticated speech patterns amuse me now. I think it makes him special.

What were some of the signs along the way?
One trait that Autism and Aspergers share is inappropriate play with toys. Since John was my first-born, it was not immediately apparent to me that he was different because I had no basis of comparison. In fact, many of these clues  were not obvious to me until my second son was 18 months old and I observed "typical boy play"

For example, John was obsessed with cars. (Preoccupation with one subject to the point of obsession is another distinguishing hallmark of Aspergers. At that time, for John, it was cars.) At 18 months old, he began to take his hot wheels and line them up in perfectly straight lines on the stairs. We found this amusing and would tease him by nudging just one car out of place and he would immediately, without expression, move it back into it's precise position. Typical boys drive the cars and make vroom-vroom noises. Not John. Another clue was his preoccupation with my hair. I have long, straight blond hair. When typical children get a hair on their hand, they shake it off or wipe it away. John loved to get a hold of one strand of my hair and he would sit for an hour and stroke it, examine it closely, etc. He was fascinated. At the time, I had no idea that was odd. Now I wonder how I could not have known. Maybe I didn't want to.

Other Aspergers signs that were clearly apparent, but seemed benign at the time, were his hyper-sensitively to external triggers. The Aspergers diagnosis includes a sensory disorder making children hyper aware of sound, light and noise, as well as disproportionate pain responses. John would scream uncontrollably if his environment was overstimulating to him. I quickly learned that very often I needed to just put him in his bouncy chair in a dark and quiet room to let him calm down. I just assumed my baby must be introverted. He was a horrible sleeper. While he slept through the night at 10 weeks, he was a ridiculously light sleeper and would wake if a gnat flew in his room. He required long naps in the afternoon, and would wake at the butt crack of dawn. His sleep patterns were consistently inconsistent. I now know this is typical of Aspergers. At the time, I thought he was just a fussy baby. To this day, he has difficulty with sleep.

As John got older, he would wildly overreact to minor bumps and bruises. He would scream and flail about as if I was attempting to hack off a limb with a dull, rusty blade. I assumed he was just a "spirited" child. I realized something was "off" when, at three years old, he fell against the coffee table and split the back of his head wide open, requiring six stitches. Initially, he let out a horrific scream, which I now understand was just from the fear of having fallen. After that, he lay perfectly still and did not cry at all. Even the ambulance EMTs told me they were "amazed" at how brave he was. He was alert and talking as if nothing was wrong. Meanwhile, his head was gushing blood. At the hospital, he didn't cry until they stitched his head up. At the time, I thought it was because he was in pain. Now I understand that it was out of fear from not understanding what was happening as well as the over-stimulation of the intense bright lights and loud noises and smells in the hospital ER.

Because of their sensory disorder, Aspies overreact to mild pain stimuli, but have a unique ability to shut off their pain receptors to extreme pain that most typical people would find intolerable. This was evidenced again when John was in first grade and broke his arm. It was broken in three places, but the only way I knew it was broken was because John didn't cry. John doesn't cry only when he is really truly hurt. This may sound like a blessing, but in fact, Aspies are less able to tell when they have a serious injury or illness. Things like Appendicitis may go unnoticed until it's too late. John will always have to be extremely vigilant about his health.

Were there any major red flags?
In one word... yes. Early on, John had inconsistent and irregular stools. He would often go for days, sometimes weeks (he went as long as three weeks once) without stooling. Multiple doctors did x-rays, rectal exams, prescribed stool softeners and other medication, but no one ever really had an explanation. James used to take John outside and make him run (like you would a dog) because that tended to help to get his system to work. Doctors told me he had chronic constipation. I had little option but to take their word for it.

As John turned school-age, the condition worsened. Eventually, he became unable to tell when he had to go to the bathroom. In actuality, I don't think he ever had a natural urge to "go" which is why he would hold it in for so long. Soon, his stools were up to three inches in diameter. Even my husband agreed this was not normal. We went to another new doctor. This one listened to me. We had him tested for Hirschsprung's, Cystic Fibrosis, Crones, Celiac, you name it. He was sent to the hospital for invasive and painful testing. Everything we tested him for came back normal. Once again, I was told he had chronic constipation and he would be fine. My husband began to doubt me. I think he thought I was a hypochondriac had Munchausen by Proxy. No matter how many professionals told me my son was fine, my mother's intuition was literally screaming at me that something was wrong. It was almost a compulsion to find answers. No one believed me anymore. I began to doubt myself. I finally told John, this was just how God made him and we settled into a routine of having him sit on the toilet every other day. John could poop on command. Who does that??? We would say, "go to the bathroom," and 15 minutes later, he would be done. We did this for YEARS.

It wasn't until this past summer of 2012 when John was officially diagnosed with Aspergers that I learned there is a concrete connection between stooling issues and Aspergers Syndrome. Many Aspies suffer with the same chronic issues John has, and being unable to determine they need to use the bathroom is quite common. I cannot emphasize enough the relief I felt at finally, after 9 years and multiple doctors, to not just have answers, but to know that my instincts as a mother were correct. My husband had questioned me and I had questioned myself to the point of a severe inferiority complex and self-doubt. I now realize that God gave mothers that innate instinct for instances just like this. I knew something was wrong with my child. I just knew it. I still can't explain how.

What were the social clues?
One of the main ways Aspergers is distinct is that it causes extreme social disabilities. Aspies are incapable of recognizing social norms or communicating normally with peers. This inability can lead to them seeming "weird" or "different," often making them an outcast. Interestingly enough, being an outcast is acceptable to many Aspies because they do not like the stress of having to try and communicate with others or build relationships. They prefer quiet and solitude.

For John, it was apparent immediately in preschool and continues to this day. He cries easily in class, is easily and quickly frustrated, overreacts to minor issues, under-reacts to large issues, speaks tersely and rudely at times to both peers and adults, has difficulty relating to peers on the playground or during games in PE, struggles with rules and socially acceptable behavior, and desperately needs a strict schedule. Much of the frustration stems from simply not understanding what is expected of him. For example, in most developed countries, it is understood that when you meet someone for the first time, you shake their hand and introduce yourself. Imagine if you were suddenly told that what you were actually supposed to do when meeting someone new was to say your name and then do 25 jumping jacks. You might laugh because the thought of that as a "social norm" is absurd. However, this is how John's brain perceives every single social norm that you and I take for granted. Shaking hands, hygiene, taking turns, speaking politely, eye contact, etc., ALL seem absurd and uncomfortable to John. He doesn't understand the need for those things. He never will understand. Just like you and I had to learn and memorize history, John has to learn and memorize social norms. He will never understand why he has to do those things, he will just learn that he has to. I can't imagine how hard that must be for him.

If you have stuck with me this far, thank you for reading this and believing that my son and others like him are important enough to take the time to understand. There are so many other symptoms and factors that I simply didn't have the time to mention here. If you have additional questions about John, or Aspergers in general, please, do not hesitate to ask me. If I don't know the answer, I can probably point you in the right direction. And, perhaps most importantly, if you currently feel that there is something going on with your child, whether it's Spectrum-related or otherwise, please, please trust your instincts. Never stop fighting for your child. You are their greatest advocate. You are their voice. Please share this blog with anyone you feel it might help. Thank you and God bless!

Wednesday, October 24, 2012

What's New on the Aspie Front?

It's been a long and often frustrating two months learning to navigate the educational system and fulfill the proverbial red tape in order to speed along the ARD process for John. I have had days where I felt overwhelmed and lost in the shuffle and other days where I felt like I had it in control, but most days, I just felt a little bit helpless while waiting for other people to complete their various requirements.

Early on in the process, based on John's outside testing results and the fact that he is extremely high functioning, it seemed that the District was leaning toward placing him on a 504 (medical) plan rather than label him "Special Ed" and assign him an IEP (individualized education plan). I reached out to friends and experts for advice, but ultimately my gut has been telling me that John really has a need for an IEP rather than a 504 plan, but it would be up to the recommendation of the District Psychologist after she evaluated him in the classroom.

After my initial talks with her, it was clear that she did not feel he qualified for SpEd and would most likely recommend him for 504. For MANY reasons, this is not what I felt was best for him, so I have been praying that God would work it out because it was totally out of my hands. I got a call from her yesterday and she informed me that after evaluating John in a the class setting, it was  1.) very apparent that the did have Aspergers and 2.) evident that there WAS a need for specialized education (IEP plan). Praise God!!!! It will ultimately be up to the ARD committee to decide which option the District will endorse for John, but they will weigh heavily on the psychologist's findings and recommendation, so this is a huge victory for John in the process of getting him the right help.

She also mentioned that John clearly needs therapy in several areas, specifically in outside organizational skills (Aspies are typically extraordinarily disorganized) as well as working in groups. Aspies are notoriously bad at figuring out the minutiae involved in group activities ie. figuring out their role, coordinating efforts, and communicating with others in the group. Compromise and interaction with a group of others is counter-intuitive to how an Aspie's brain is wired. It causes panic and great stress when they have to coexist in a group setting and be expected to participate. However, working with others is a life skill that John must develop if he hopes to be a fully-functioning adult. It's hard to force your child into situations that make them overwhelmingly uncomfortable and nervous, but as a parent, I have to remind myself that he must struggle in the short term to survive the long term. It's still hard.

So now, the next step is to schedule the ARD, hopefully in the next couple weeks and then we can finally start getting John some of the intervention he needs to be successful academically and individually. I'll keep you posted!!

Here is a recent pic of John visiting my Grandmother at her nursing home and another of John and me on our summer vacation this year.

Saturday, September 22, 2012

Scariest. Morning. Ever.

Most of you know we have two labs, three year old Scooby and 7 month old Paris. They are best friends. Paris adores Scooby and follows him everywhere. They play constantly and Scooby is so patient with Paris's puppy antics. When they do play, it sounds like they are attacking each other. They absolutely sound ferocious, but they are so gentle and careful not to hurt each other and their tails are constantly wagging.

This morning was no different than any other lazy Saturday. James and I were lying in bed getting caught up on our emails and Facebook while the boys played with their DSIs and Jossilyn watched cartoons. We were all gathered in the master bedroom.

The dogs tend to get playful after they eat breakfast, and we were pretty much ignoring them as they wrestled loudly on the floor. Suddenly, Scooby yelped in pain. I continued ignoring him initially because occasionally they nip each other too hard. Then, Paris yelped. It sounded urgent. All of a sudden, John screams out that Scooby's mouth is caught on Paris' collar.

James and bolted upright and looked over the end of the bed. Within just those few seconds, the dogs had gone into full-fledged panic. The problem was obvious. Somehow, as they wrestled, Scooby's lower jaw had slid under Paris's collar and was wrapped tightly around his back teeth. His canine teeth were preventing him from being able to dislodge his jaw. The more they panicked and tried to separate, the tighter the collar became on Paris's neck and the more frantic they became.

James leaped out of bed and, in a single motion, he was on top of Paris trying to free her collar. This was no easy task as the dogs were flailing around the room, frantic and terrified. Scooby thought that Paris was attacking him on purpose and he began to growl and attack back the best he could, biting into her neck.

James had a hold of Paris, but she wriggled away and flipped. Now the collar was twisted, as well as trapped on Scooby's mandible, and Paris was now being strangled tightly.

Scooby weighs 85 lbs and Paris weighs 40. I realized that James was really struggling to control 125 lbs of terrified, panicking dogs and I jumped off the bed to help.

By this time, the dogs were yelping loudly, Paris was crying out in this mournful, childlike wail that terrified me. I had never heard a dog sound like that before. The boys were screaming in fear and Jossilyn was starting to get upset.

I grabbed on to Scooby and tried to throw my weight against him while simultaneously getting him in a headlock. My goal was to try and hold him still so James could get the collar off Paris. Unfortunately, with the collar pulled so tightly against her neck, and being twisted as well, he was unable to wedge his fingers in enough to release the clasp.

James started crying out, "I can't do it!! I can't do it!! My God, I can't do it!!" his voice was full of fear and near breaking with emotion. In our 14 years together, I have NEVER heard him sound so scared or helpless. I glanced at his hands. His fingers were shredded and bleeding from trying so hard to release the collar. He had bleeding gashes all over his upper torso from the dogs' claws as they fought for freedom. James was trying so hard. I kept putting all my weight on 85 lb Scooby. It was all I could do.

The boys were screaming and crying in terror. I was crying. The dogs were crying. Then Paris went silent. She had passed out and was very near death. We still couldn't free them. I screamed out, "She's dying! We're killing her!" I screamed for John to run and get scissors. Paris was so near death that her body simultaneously and involuntarily defecated, urinated and released her glands. We were out of time.

Fortunately, when Paris passed out, she went limp which gave James just enough millimeters of space to squeeze the release on her collar and get it free. He freed them just as John returned with the scissors.

James carried Paris's limp little body away from the kids' view while Scooby collapsed in my lap. His gums were swollen, shredded and bleeding where the collar had dug into them as he struggled, but thankfully, he had not lost any teeth.

I looked at James and cautiously asked if Paris was alive. Before he could answer, I heard her head shake. James had freed them in just the nick of time and she came to on her own. Her neck is bare of hair where the collar pulled so tightly against her and we can feel where her throat is swollen.

I kept an eye on her all day to make sure her throat didn't swell shut, but she seems fine.

If this had happened while either James or myself were not at home, Paris would have died. Neither one of us could have controlled 125 lbs of dog AND freed the collar at the same time.

I am SO thankful that we were both home and that James was able to free them before we lost Paris. I can't imagine the trauma my kids would have felt if they had to witness Paris die in such a freak accident. Thank you, Jesus, for your providence over my family - even the canine members!!

Here is a picture of Paris' neck after the incident...

Tuesday, September 11, 2012

In Memory

Our lives have never been the same since that fateful day, eleven years ago. These days, we mostly go about our lives without dwelling on the tragedy that was September 11, 2001. But, like many of you, I choose to pause and reflect on the anniversary; to remember and recognize the thousands of innocent people that lost their lives that day, just going about their business.

It's the least I can do.

For the mothers and fathers who lost their babies, and the babies who lost their mothers and fathers, this day was a defining moment in their lives. It shaped who and what they are. For those of us who were lucky enough to go to bed that night with all our friends and loved ones accounted for and safe, it emphasized what our true priorities are, or at least what they should be.

Thank you to all those who fought at Ground Zero that day. And THANK YOU to those of you who have fought and continue to fight for my freedom since that day. You are true heroes and I am humbled by your sacrifice.

I made this video last year, but I thought I would repost it today. God bless.

Monday, August 27, 2012

Calming the Storm

Wow. That's all I can say. In the past week, I have been blessed with an overflowing of love and support from so many. It's been quite humbling to receive all your emails, Facebook messages, phone calls, etc. I am beyond touched. I aplogize that I have not gotten back to all of you. As much as I covet and love all your advice and personal stories, it became overwhelming at times and I have had to step back intermittently for breaks. Thank you for your patience and understanding.

This past week has been a roller coaster of emotions. Even though I expected the Asperger's diagnosis, it took a while to sink in that we had graduated from "possibility" to "reality". James, especially, has had a more difficult time processing everything. Unlike me, he didn't see the signs as clearly and really did not believe there was a diagnosis to be made. Therefore, it came as quite a shock to him and the reality of it took its toll on both of us. I shed a lot of tears last week.

I am in the process of setting up all the necessary meetings with the school district in order to accommodate John's unique learning style. It's an arduous, lengthy process. The paperwork is both daunting and redundant. I find myself in a position of uncertainty and unfamiliarity. It's uncomfortable and I don't like it. The meetings ahead are also intimidating. Praise God my mother, who has been a teacher for nearly 30 years, speaks the "code" (the endless series of acronyms that the legal process uses) and has offered to attend the meetings with us to translate and assist. The process is tiring and I worry that John will struggle until we can get these steps in place.

I spent a good deal of time this past week researching and learning what I can. At times I literally had to walk away from the computer. The information (thankfully) is abundant and it was overwhelming sifting through the various websites and documents and making sense of what did or did not pertain to our circumstances. We are blessed that John is very high functioning, but in some ways, that seems to limit the number of options for therapy available to him. Add to that the difficulty of finding a reputable facility near us that accepts our insurance and offers the type of help that John needs – it seems an insurmountable task. After days of combing the internet and numerous phone inquiries, I came up empty-handed and felt quite defeated and discouraged. I still do. There were several times I wanted to quit searching and go back to the status quo. For John's sake, that's not an option. I did, however, give myself permission to abstain from research or discussion of Asperger's for the better part of the weekend. My mind and heart were weary and I needed a break.

Friday night, we sat John down and told him the diagnosis. We both felt it was in his best interest to understand why things would be different this school year and he would receive some special assistance prior to the start of school today. The main thing I wanted to convey to him was that he had no need to be ashamed or embarrassed. This is the way God made John and he is perfect in God's eyes. I began by telling John that God had given him a most special gift. God had given John a special mind that was able to think in ways that his Daddy and I and others cannot. John is able to perceive information differently that most people and that makes him special. I explained that he had an Asperger's mind. His face scrunched up. “That's a funny word. What does it mean?" he asked. I gently but firmly said, “John, you are not sick. This is not a disease and you are not going to die. You don't have to take pills for this or get shots. This is simply how God made you. He chose you to have this special gift.” 

I told him how it was the Asperger's that was causing his difficulty concentrating and why he got so easily frustrated. I noticed his eyes begin to well up with tears and his face started to crumple. In that moment, my stomach dropped. Had we made a mistake? Was it wrong to tell him the truth? I asked him what was wrong; what he was thinking. He looked up at me and asked, “Mom, is the Asperger's why I am different from the other kids? Is that why I'm not good at certain things? Is the Asperger’s what's wrong with me?”

I was just about to reassure him that nothing was wrong with him, when he suddenly broke into a smile and added, "Or should I say… what's right with me?!?”

I knew then that my son will be just fine.

He asked a few more questions before I kissed him good night, and as I turned to leave the room he suddenly asked, “Mom, am I allowed to say Assperger's or do I need to call it Buttperger's?” He was totally serious. I don't think I have laughed that hard in all my life. Thank you, Jesus, for giving us calm in the midst of our storms.

I LOVE hearing from you!! To leave a comment, simply click on the word "comments" below this post, just under my name!

Tuesday, August 21, 2012

Beauty From Ashes

Life isn't fair. We learn that as toddlers and life continues to prove the point repeatedly as we mature. As humans, we plan our lives exactly as we would chose them to be, but, inevitably, we are thrown curve balls that alter the dream and paths we hoped to follow and we must build new dreams and alternate paths to achieve them.

Yesterday, life threw our family such a curve ball. It was not totally unexpected - at least on my part. But somehow, hearing it made official, seeing the words written on paper, was more difficult that I anticipated. I have suspected since he was four months old. The clues were there. The signs were there. But it didn't have to be real because no one had officially "made it so". Now it is official.

My son has Asperger's.

Asperger's syndrome, also called Asperger's disorder, is part of the Autism Spectrum and is a type of pervasive developmental disorder (PDD). PDDs are a group of conditions that involve delays in the development of many basic skills, most notably the ability to socialize with others, to communicate, and to use imagination.

Hearing those words from licensed professionals; seeing them written in black and white… suddenly, all the original dreams we had for our son changed. It hurts. I don't know how to raise a child with "special needs". I don't know how to protect him. I don't even know how to tell him. I only have nine years til he moves out of my house and goes off to college. Nine years to teach him how to deal with a world that he sees completely differently than me. Nine years to teach him how to break through his own barriers and become a functioning member of society - a task that is counter-intuitive to the way God wired him.

But God did wire him.

My son is made perfectly in God's image. God loves him even more than I do and He has plans for my son that even I cannot fathom or predict. My heart is broken for my son and the difficult road ahead for him. My heart breaks for the nine years we did not have a diagnosis and he struggled to function the way he thought we expected him to. My heart breaks for multiple times in the last nine years when I, his Mommy, did not meet his needs or respond in a way he understood. He must have felt so alone at times. My heart is breaking over the label "special needs" that will be written on school forms from here on out. I pray his self image never suffers from these words on a page. My heart is breaking for his lifelong challenges with finding and building relationships. I pray God puts loving people in his path that will love my son because of who he is, not in spite of it. I pray God helps my husband and myself find equal ground in the days and years ahead so that we can be a united front and a safe place for John to land when he needs it.

Our family is embarking on a new journey. My son hasn't changed, but our understanding of him has. His world hasn't changed, but now we will (hopefully) be able to provide him the tools to navigate it more easily.

There are so many people out there so much farther long in this journey than I am. I welcome and covet your insight and any tips that have helped you guide and raise your children. What worked, what didn't work, what resources or therapy were most helpful?

Lastly, please pray for our family, especially James, myself and John, as we re-learn how to relate to each other and seek appropriate outside therapy and resources - that we would be guided to the right places.

God does not make mistakes. My son is a perfect example of God's beauty displayed differently than what is perceived as "normal".

I LOVE hearing from you!! To leave a comment, simply click on the word "comments" below this post, just under my name!