Dear Suicidal Teens (And How Dear You Are, Indeed)

Dear Suicidal Aspie Teen (Or Autistic Teen, Or Teen With PDD-NOS, Or ADHD Teen, Or OCD Teen, Or Bipolar Teen, or Depressed Teen, or Gay Teen, or Trans Teen, or Bullied Teen, or Abused Teen, or Whoever You May Be):

I can’t promise that you’ll wake up one morning and your world will be filled with endless sunshine (or moonlight, if that’s more your style) and happiness and prosperity and that you’ll never have another self-loathing or suicidal thought ever again. I can’t promise that you’ll ever be the most well-liked person in your school or workplace or that you’ll never be bullied or loathed or put-down ever again. I can’t promise that your world will be any less overwhelming, any less dizzying, or any less difficult to live in than it is now. I can’t promise that you’ll become the next Nobel Prize winner, the next Pulitzer-winning author, the next Grammy-winning musical artist, the next Oscar-winning actor or actress, the next gold-medal Olympian, or what-have-you. I wish all of these things for you, of course, but I’m no psychic; I haven’t a clue what your future holds.

But having dealt with suicidal urges since the age of twelve, I do know this: staying alive is worth it.
Now, some of you may be thinking, “Yeah, well, staying alive may be worth it for you, but you don’t know me, and you don’t know the hell I live in.” And, indeed, I do not. I don’t know if you having a loving family or supportive friends; I don’t know if you have family or friends at all. I don’t know what it’s like to have your exact sensory issues, your exact deficits, your exact anxieties and fears, your exact tics and stims, your exact pain, your exact loneliness, or your exact regrets. I don’t know if you’ll ever graduate high school or college, and I don’t know if you’ll ever get a job (fun fact: I turn 20 years old in a month, I’m a straight-A student who supposedly has “decent social skills,” and I have never been employed a day in my life. It’s not just you, I promise). I know what it’s like to have my PDD-NOS, to have my weakness and inadequacies and painful memories and regrets, but I don’t know what it’s like to have yourstruggles, and I’m not going to pretend that I do.

 But I know what you do have: you have yourself, and that “you” deserves a chance—a chance to try, a chance to experience, and a chance to find beauty in this world. See, there’ll be moments that you’ll be glad that you stuck around to experience. I can’t promise that the moments will be particularly abundant, but I can promise you that they’re there. There’ll be a song that you never heard before that sends chills from the tip of your head to the core of your being. There’ll be a time when you help a stranger, perhaps even an act so small, so inconsequential to you that you have no idea it was an act of kindness at all, and that stranger will tell you that you made their day, and your heart will beat a little lighter for a little while. There’ll be that hobby that you get into, a hobby that you may or may not ever be “good” at, that will fill you with awe and, well, fun! There’ll be a way that the sunset scatters across the clouds, a way that the leaves tumble from the trees or that the wind sweeps across a field of tall grass, a way that the rain will dance along the rooftops, that will take your breath away, even if for only a second. There’ll be a contest that you enter that you swear that there’s no way you will win or place in…but you do, because you’re more incredible than the self-loathing thoughts in your head will ever let you believe. There’ll be battles that you win, discoveries that you make, and joys that you have that bring you happiness just when you thought that happiness could no longer exist.

And maybe it’s presumptuous of me to assume that the little moments of happiness are worth dealing with whatever pain you are dealing with. But consider this: maybe you’re somebody else’s small miracle, somebody else’s stranger, smile, random occurrence that makes their day or even their life, and maybe your dark thoughts are being conniving little jerks that aren’t letting you see this.

Sometimes, you mean a lot more to a person than you’ll ever be able to believe.

Throughout most of my adolescence, I swore that my father merely tolerated me because he had to and that his life would be indefinitely better without me in it. It wasn’t his choice for his wife to give birth to his child when he was 48 years old, when his other children were already grown up and getting on with their own lives and when retirement was just over the horizon. It wasn’t his choice for that child to be “developmentally delayed” and for that child to need speech therapy and special education. It wasn’t his choice for my mother, through no fault of her own, to be forcefully removed from our family picture when I was six. It wasn’t his choice to have a daughter who threw deafening tantrums in the middle of crowded supermarkets and for strangers to judge his parenting skills. It wasn’t his choice to have a teenager that bit and scratched herself, that would almost get them both killed with her inability to distinguish “No!” from “Go!” from the driver’s seat of her small car,  that made him stay up late at night sobbing with worry. It wasn’t his choice to have a kid like me.  I thought that there was no possible way that he could have trulyloved me—all I ever seemed to do was drain and irritate him, and he didn’t deserve the trouble I put him through.

And I told him this in a therapy session one day; I told him how sorry I was for ruining his life and how I wish that I could be a better daughter, one that didn’t make things so worrysome for him. He was absolutely flabbergasted; he swore that I was the best thing that ever happened to him. Many days, I highly doubt that this is at all true, but the way his eyes almost glistened with tears (note: this is a man who passes large kidney stones and attends family members’ funerals without even hinting at a tear) that day tells me that I must mean something to the guy. He said that I keep him young, that his later years would have been so much less colorful without me in it. Now, I’m sure that I age him much more than I refresh him, but maybe the goofy poetry that I write inside of hand-made cards serves as a Fountain of Youth running behind those wrinkled eyes. Also, I’m his personal tech support; I’m the one that taught him how to use an iPhone and how to set up a Facebook account. That has to count for something, right?

See, we humans aren’t too good at telling our fellow humans how much they mean to us. It may well be that where you look in the mirror and see a burden, an aggravation, a chronic screw-up, others see a joy, a blessing, a person worth having around and a person that makes their lives better simply by you being in it. When you see yourself as unlikable, you may wonder how anyone else could possibly like you, either—I,  personally, tend to expect that everyone sees me as bothersome or annoying and am often very taken aback when someone admits any sort of fondness towards me. But you are likeable, and chances are that there’s at least somebody out there who has a fondness towards you and who would be sad if they could no longer experience your presence. 

And I know that you can know and believe all of this and that it still won’t take the thoughts and feelings away. I still feel absolutely worthless and useless many days, and I still don’t particularly like myself as a person sometimes.  Knowing all of this about the beauty of living and about how loved I really am doesn’t do much to keep the images of a knife cutting through my throat or my body dangling from a tree by a rope from popping up from time to time. It’s an on-going battle, one that you may have to fight every single day or even every single hours. It’s not at all a fair battle, it’s not at all an easy battle, and it surely isn’t a fun battle, but it’s a battle worth fighting, and it’s a battle that you’re more equipped to fight that you may ever feel that you are. And the good news is that there are so many people fighting this battle alongside you and that would be more than happy to help you recharge your ammo. There’s the National and Regional suicidal hotlines for your area (United States: 1-800-784-2433 ; U.K: 08457 90 90 90 ; here’s a pretty comprehensive list: http://www.reddit.com/r/SuicideWatch/wiki/hotlines), as well as several online chatrooms, such as https://www.imalive.org/. There’s the members of this Aspie Life group. There’s me, if that’s anything. There are so many people who want you to win this battle, who want you to live, who want you to experience happiness and success and all that life has to offer. There are reasons to keep fighting. I promise. 

Because I know that I can’t promise that you’ll ever win a Nobel, a Pulitzer, a Grammy, an Oscar, or an Olympic gold medal, that you’ll ever have an abundance of friends or your dream career or a lover or even a degree, but, you know, you just might, and the only way to find out is to stick around and see. 

Submitted January 4th, 2015 

Author: Paula Gomez

Click blue link for: Email Contact

Light it up Blue for Autism

"In celebration of World Autism Awareness Day on April 2, Autism Speaks will again seek to turn the world blue. Our third annual Light It Up Blue initiative is fully underway with over 350 buildings already committed to turning blue.

Among the landmarks that will be turning blue on April 2, 2012 are Rockefeller Center, Top of the Rock Observation Deck and Madison Square Garden in New York City, Hôtel de Ville in Paris, France, the famous Tokyo Tower in Japan and Canada’s CN Tower, the Sydney Opera House in Australia and Michigan’s Mackinac Bridge.

Visit our website to learn how to participate and check back in early March to LightItUpBlue.org to register your events and see a full list of participating buildings.

Last year we had over 2000 buildings and landmarks turn blue. With your help, in 2012 we will more than double that number!!"  (taken from http://blog.autismspeaks.org/2012/02/22/liub-2012-kickoff/)

Lowes has blue bulbs available. Please stop by to get your blue bulbs and light up your own home to raise awareness for Autism. Thank you. 

RIP Dixie

RIP Dixie

I don't know where to start. I guess first I need to tell you how we met Dixie.

Our family purchased a home in a very rural area in March of this year. It's perfect....the location is all we've ever dreamed of. We live in the midst of a forest, with a lake nearby. Neighbors are practically non-existent and we never hear sounds of traffic. Our lullabies are crickets, frogs and wonderful, peaceful, calming sounds of night.

About a week after we started moving in, my friend James and I were traveling with my three children to go pack up some more belongings at our former home. As we came near a stop sign, we saw something run across the road. We weren't quite sure what it was, but thought it might be a dog. Living in a rural area means that it's not uncommon to see animals get dumped. We stopped at the stop sign, opened the driver's door, and whistled. Up came running Dixie. She was wagging her tail so much the whole back half of her was swinging from side to side. Without hesitation she climbed into the drivers door, under his legs, across the center console and stretched herself across my 3 children's laps.

I'd always told my daughter, Keara, that when we bought a home, we'd get a dog. She'd waited 11 years. When we bought our home, she told Pookie (our 5 year old son with Autism) about our deal. He had prayed each night for a week for God to give us a dog. When Dixie stretched out across his and his siblings laps, he smiled as big as he could and with wide eyed wonder told me, “Mommy! God gave me a dog!” Whose to argue with a child's faith?

A few weeks after Dixie came into our lives, it was warm enough for the children to go swimming. You know the time of year....when the air outside is warm, the sun is bringing a warmth to your skin that you longed for all winter, and though no adult would ever get into the still chilled water, the kids all think it feels great! As us adults sat on the shore with Dixie, our children frolicked and played in the lake. Our 11 year old daughter, got caught in a current. Though she could paddle and keep herself in the same spot, she couldn't get up to shore. As I was getting ready to get in to bring her to shore, Dixie jumped in the water. To our shock and surprise, Dixie swam out to Keara, placed her collar under Keara's hand, and pulled her to shore. Everyone was shocked and thrilled.

Dixie seemed to also have been trained as a therapy dog. Though we have no knowledge of her background, she always stayed beside Pookie when he was out of doors. She would run beside him on his bike, and even get in front of him if she felt he went to far. He would lie down, resting his head on her and she was content. When he would start to have a meltdown, she would come and push against him.....calming him tremendously. She was in tune with him on a level I'd never seen between child and pet.

As time progressed, so did Pookie. His neurologist wasn't surprised. He'd told me the best thing I could do for him, and his older brother that has Asperger's, was to get them a good dog. He said he'd seen children advance and make progress with a dog that otherwise wouldn't have been accomplished.

A few months after God brought us Dixie, our daughter was attacked by a much larger dog. Dixie was a cocker spaniel mix. The other dog was a German Shepard/Lab mix. Dixie, despite being a fourth of this other dogs size, defended Keara with a vengeance. I have no doubts that she saved my daughter's life. At one point, Dixie stuck her entire snout into the other dogs mouth!

Dixie became loved by all the children that came to visit. Being that I have children on the autistic spectrum and with health issues, I am often visited by other families that have children with special needs. Dixie always connected with them. She offered them a sense of security and calm in a world these children often don't understand. Somehow, Dixie made everything OK.

When my 14 year old with Aspergers, Keeg, decided to walk to my parent's house, it was almost dark. I hadn't realized he had left, but merely thought he was taking a quite time in “his spot” in the woods near our house. When my daughter and I began to look for him, it was getting close to dark. He didn't answer, he wasn't in “his spot”, and we began to worry he was lost. We walked the drive, calling for him, but to no avail. I noticed that Dixie wasn't in the house, or outside. I knew that if Dixie wasn't coming to us when we started to call her, then one of two things was happening. Either Keeg was hurt and Dixie wouldn't leave his side, or they were out of ear shot. This realization prompted me to run back to the house so I could call 911. By now it was dark, and it was cold out. Keeg was only wearing shorts and flip flops. He has health issues and is unusually weak. I was panicked. As I started to call 911, a call came through from my parent's. I heard Keeg's voice say, “Hey Mom!” He hadn't realized the gravity of what he'd done. He said that when he started to leave our property and Dixie followed, he tried to run her home, but she wouldn't leave him. He said she stayed with him the entire time. At one point he said he saw some dogs and was scared, but Dixie barked a few times and that was that. He had gotten scared on the way, and cold, but Dixie kept him centered and moving forward. He said without her, he'd have probably hid in the woods on the side of the road. But, Dixie was there with him and so he knew it would be OK.

After that incident, Dixie got it into her head that she could leave our yard and try to get to my parents where she'd walked with Keeg that night. Although she occasionally wandered to our neighbors home (often invited by the renters that stayed there), she never went the opposite direction unless leashed. Yet, for some reason she figured that if she'd gotten to go that night, she was going to continue. Finally, we quit letting her go out with the boys unless she was leashed. She spent her time in the house and at times would drive me insane. She was used to running and jumping with Pookie, and since she didn't have that outlet outside, decided to do it inside. Pook of course missed the same play, and actively participated indoors.

A week ago tomorrow, my husband was involved in a terrible accident. He suffered a skull fracture and an epidural hematoma, pooling blood and air pockets that put pressure on his brain. He was air lifted to a hospital to be seen by a neurosurgeon. We are blessed to have a large network of prayer warriors, all who spread the word quickly and got many people praying for him. He was blessed, and quite surprisingly to all, came home after only 1 night in ICU, and 1 night on a general floor. He is in pain, and has memory loss. He also doesn't remember much of what happens in a day. He has to stay supervised for the most part, as often he doesn't remember his injuries.

While we were in the hospital, Dixie was left alone. Although she was fed, watered, and taken out.....she had not been alone since God brought her to us. I remember my horror when we got home from the hospital. There was not a square inch of floor uncovered. Toys from the kids rooms were scattered throughout the house, mixed with the garbage that had sat in the can unattended during our hospital stay. I couldn't believe one stressed out dog could have created such destruction.

I felt bad for having left her cooped up and unattended. I let her out and stayed with her to make sure she didn't run off. She stayed right around the house. Apparently her extended stay inside, only being taken out long enough to use the bathroom and only seeing someone for 10 minutes a day had fixed her issue of running off. She stayed close to the house, only venturing to the end of our personal driveway, then coming back. She was so happy to see us.

The next day, I had to run into town to grab some groceries. I couldn't find anyone to stay with my husband, but had to get him something to eat. I timed my trip so that he'd be sleeping and rushed to get things done. I came back in aprx 30 minutes. As I rushed to come in and check on him, Dixie jumped from the van. I checked on my husband, and went out. Dixie stood at the end of our personal driveway barking. I knew she was barking at the trespassing hunters. I'd seen their truck on my way in. Despite continually asking hunters to leave our property and the property adjoining ours, and explaining that we have to children with Autism, they still continue to return. Dixie stood at the end of the drive barking as I carried in groceries. Suddenly, she quit barking and started wagging her tail. She got excited and her whole back end started to move back and forth. I couldn't help but smile. Dixie would get so excited when she was going to get affection that she'd shake her back end so much she could barely run. She took off down the drive. I assumed that someone we knew was coming down the drive.

I was wrong. When I got the last of the groceries in, I went to get Dixie in. No one had come up the drive and I couldn't figure out what she had taken off the drive so happy about. She wouldn't answer my call, and I didn't see nor hear any sign of her.

I found her later. It was dark and I was driving out the drive. I just happened to get a glimpse of her green collar as I drove by. My heart sank. I backed up and cut on my high beams. There was Dixie, laying on the side of the drive in the grass. My heart sank as I realized she wasn't moving. “She's been hit by a car” I thought. Then I thought, “She's just hurt. The vet can save her!” I jumped out and ran towards her.....and then I saw it. An arrow.....extending out of her. She was dead. My husband said he was so scared and worried for me. He said it was as if I crumpled, but was still standing on my feet. He said he'd never heard anyone scream like that. My heart was shattering....all I could see was our beloved pet, our family, lying there with that arrow protruding.

I drove back home and called my best friend. Halfway up the drive I stopped as my sobs and screams were wracking me so much that I couldn't drive. I made it home and called my best friend who advised me to report it to the police. I called 911 and was told a deputy was coming out. I drove down to sit beside Dixie, worried that the coyotes or other animals would disturb her. My husband insisted on coming with me, telling me he could never rest knowing I was sitting there alone. I finally convinced him to go home and lie down. I drove down the drive to turn around. There were headlights coming towards me, but as soon as I spotted theirs, they must've seen me. They turned around rapid fast and took off down the drive. Instinct made me go after them and I was shocked to see a small pickup truck, very similar to the one that was there when I'd gotten home from the grocery store. I wrote down the tag number and returned to give it to 911, hoping that the deputy coming out would see them as he passed. When the officer arrived, I told him about the truck. He had passed them on the way, but had not gotten the message from dispatch. After getting all the needed information, he told me that unless they confessed, he couldn't do anything. If they confessed, the only thing he could do was give me the information so that I could go to the magistrate for “destruction of personal property”. I was dumbfounded. These hunters repeatedly trespass posted private land, lured my dog from our property and shot it, and nothing could be done. I was told that nothing could be done because their was a leash law, and my dog wasn't on a leash when he was killed. My heart sank. She'd been killed within 15 minutes of jumping from my van. I saw her run down the drive happily to greet her murderers, and never had a clue what was happening. I even remember hearing the truck drive up and leave as I was calling out to her, but never considered that any hunter would ever harm an innocent dog. Especially not hunters that had already been told that there were two children with autism living in the home. Did they have no heart?

After the officer left, I made a call to my best friend. With my husband having a brain injury, he isn't allowed to lift anything. There was no way I could bury Dixie as I'm not strong enough to dig through the hard clay rock. She couldn't be buried until the next afternoon, when a friend of mine would get off work and come do so. I had to get Dixie to the house and protected from the wild animals of night. I drove down to where Dixie lay. I could have walked there in less then 3 minutes, but it was very cold and I needed the warmth of the van. I took my camera and using the flash surveyed the area. I could see where the hunters had stood next to Dixie in the tall grass, even as she stood in the grass beside the drive that was mowed that very morning. The hunters and Dixie were on the neighboring property to ours.......property that is private and posted as no hunting allowed. Using my headlights and the flash of my camera, I walked a bit further down and saw a well worn path the hunters had been using to get from their truck to the adjoining property. I came back and took pictures of Dixie. I wanted to make sure that somehow her death would not be in vain, and maybe the photos would help that.

I sat with Dixie until my friend could arrive. As we lifted Dixie to place her on a piece of wood, I almost choked. When we lifted her up, we could see the other end of the arrow. We could see the angle, and how far the arrow protruded from her. Although I had never doubted that it was intentional, due to her having been shot beside our drive, it had never occurred to me exactly how cold hearted these hunters had been. They had stood directly over her when they shot her. They shot her through the heart and the evidence of this was pooling around her. Dixie would have been looking up at them with her adoring eyes, tail wagging so much that her behind swung from side to side. How could they have looked at that adoring face and brutally murdered her that way?

We laid her Dixie in the van and brought her home for the last time. My husband had been building a storage building next to our home. We put her in there and wedged a large piece of wood over the door. I laid awake for hours in bed that night. I just kept seeing those so called hunters standing over her, with her excited to be getting attention, and the arrow piercing her. Although I was glad it had been a shot straight through her heart, my own heart felt just as pierced. I cried throughout the night, muffling my sobs so as not to disturb my husband who was still in immense pain from his injuries.

I woke the next morning going over the needed chores to be done. Then the image of her laying beside our drive pierced through my mind. I got up quietly, pulled on my shoes and sweatshirt, and headed out with my camera. I walked this time. Though still cold, I needed that extra minute to prepare myself. I had noticed the night before that the end of the arrow with the quills had been broken off. I had remembered hearing in the past that hunters mark that end of their arrow with their initials or an identifying mark. They do this so that they know who made “the kill”. I searched the area where I'd found Dixie and as I walked back towards where their truck was parked, I found the broken piece of the arrow that had the quills. Dixie's blood was still on it. I found two pieces, laying next to each other. Yet, the very end, beyond the quills, was missing. The part where the initials would have been.

I then thought back to their returning that night. I figured it had to be the same truck, despite it having been dark and my vision being limited. Why else would they have turned around so rapidly and taken off like a race car driver down a curvy gravel road when they saw me? I wondered for a moment why, as I'd done the night before. I felt that they must've been coming back to take Dixie's body. I still haven't thought of any other reason they would have had to return.

I came back home and headed straight to the shower. I thought back over the last week. Finding out my eldest son has to have a lung biopsy done, my husband's accident and injuries, and now Dixie. I felt.....fragile. My husband woke as I came through our bedroom. I got into the shower and as the water poured over me, I lost it. The tears wouldn't stop and I was grieving for so many things. I was grieving for Dixie's life. I was grieving having to explain it all to my children. I was grieving for their heartache. I was grieving for all the children that loved Dixie and would have to be told. At some point, though I didn't notice, my husband opened the shower door, turned off the water, wrapped me in a towel and held me. I was thinking of all the ways I might have saved her. If I hadn't taken her with me, if she'd been on a leash in the van before I opened the door, if I hadn't carried in groceries first, if I'd gotten someone else to dog sit while I was caring for my husband. I must've spoke these out loud because I remember my husband telling me over and over again that it wasn't my fault.

That afternoon, my two best best friends came over to help me bury Dixie. James had been there the first time we saw Dixie, and now he was helping lay her to rest. It was a very emotional time for us and anyone watching the three of us would have surely wondered as to our sanity. It took a long time to shovel through the clay rock. When it came time to get Dixie ready and to lower her, my dear friends sent me on an errand so that I wouldn't have to see. By the time I got back, the grave was already half way filled in.

Yesterday evening my children came home. Due to their father's injuries, they had not come home yet. I spent the evening consoling Pookie. After he fell asleep, exhausted from his cries, our older two children came to me. They cried for hours before falling into restless sleep.

Dixie was a blessing to our family. I will never be able to understand how anyone could take the life of an innocent. I've never been able to understand how someone could get so angry at another that they would intentionally hurt their children. Maybe these so called hunters thought that by killing my children's therapy dog, that I would leave them alone and let them hunt here. Maybe they figured I'd settle for keeping my kids inside at all times for fear of them hunting next to my home. I guess I'll never know what they were thinking. Part of me hopes that they will always see her beautiful eyes and her wagging tail begging for love as they took her life. Yet, what I really want is for pets and children to be forever safe from these people. I want to make sure that somehow, these people are never allowed near my home again. I want to know that my children can jump on their trampoline, ride their bikes, and check the mailbox without being worried that they'll be mistaken for game. My children always wear hunter orange vest when venturing into the forest, even the forest on our own property. Should they have to wear it just to jump on the trampoline or to check their own mailbox?

I pray that somehow, some way, our home is restored to the dream home that we envisioned it to be. I pray that the children with special needs, and even those without, can come here again and not worry about whether or not they may be within feet of a hunters bow or gun. I pray that once again this home and these woods can become that which God intended it to be......... paradise.

RIP Dixie, You will always remain in our hearts. We love you! 

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.