Grown Up New Year's Resolutions

A few minutes ago I was sorting through some notes I'd posted to my timeline on Facebook and I came across one from New Year's Eve 2010. With 2014 a mere three days away I thought I would brush the dust off of them and share them here. Like myself, they are a work in progress, growing and changing. With that I give you--

Twenty-some odd years ago, as the New Year was dawning, I remember sitting down with my pen and paper, feverishly sketching a list. Not just any list...THE list...a list that most of us make each New Year with the best of all intentions of seeing it through. While memory fails on each and every item on said list, I do remember it looking a little something like this:

1) Losing this excess weight

2) Meeting my financial obligations (which is a hoot now, considering I was unemployed then!)

3) Seeing all of my written works published

4) Meeting the "right" person and having a family (okay, I never actually put this on the list but it was implied.)

5) Finding a good (translation: a high-paying, work-too-many-hours, no time for God, family, self to the point of developing hypertension and possibly having a heart attack) job and being successful.

And the list went on....

I was 18 and  barely into  my first year of college when I made that list. I had the best intentions when it was made. We all want to move forward in life, to gain promotion, to be successful, with the approval of those around us. None of us want to struggle. We don't want the pain of being unfit, in debt, working a dead end job  because that's all that's available due to an uncertain economy and job market. We also don't want to be alone. We may say it with our words and to some degree show it in the way we conduct our daily lives but the truth of the matter is, we are not equipped to walk through this world by ourselves.  None of us want to be uncomfortable. I am no exception. Sadly, 23 years after writing this list, I found myself exactly where no one wants to be. It was a combination of the choices of others coupled with my own heartbreak and rebellion. As a result, my perspective has changed along with what I have come to see as truly important. With that, I offer my new list of resolutions for 2011; some "Grown-Up Resolutions" as it were.

1) I desire character above reputation. A reputation is the way you present yourself to the world. Character is who you are when no one but yourself and God is present.

2) I desire mercy, forgiveness, and compassion, keeping in mind that I myself stand in the need of these things daily.

3) I desire patience and humility in times when pride would like to rear its ugly head. 

4) I desire joy, peace, stability, and maturity. I have wasted 23 years of my life allowing my feelings to boss me around and determine the way my day was going to go. I have wasted 23 years of my life by not setting and maintaining healthy boundaries. I have wasted 23 years of my life letting my circumstances lead the way and in doing so steal my peace and my joy. I have wasted enough time being touchy, petty, mistrusting of people, and outright miserable. I no longer have my life in front of me as I did when I was 18. And I no longer have the time for wasting anymore time.

5) I desire a healthy, balanced relationship with myself. I am the one person in the world I can never get away from. And as mentioned before, I have wasted 23 years of my life comparing myself to others for a myriad of reasons; not being satisfied with the gifts God gave me, wishing I looked like Sister So-and-So, wishing I could sing, dance, etc. like this person over here. I have wasted so many years trying to change my hair like my favorite singer (Amy Grant's spiral perm), trying to change my body in unhealthy fashions (can anyone say "California Diet" along with "Slim Fast"?), trying to change my ways of speaking including not speaking at all because someone believes I talk too much and adopting the likes of others whether or not I may actually share these likes. I have finally come to the conclusion that I am who I am and as such, I am making peace with my hair, my mouth, and my thighs!

6) I desire to love people and to help people when and where that may be possible. Maybe through a smile, a look, a hug. Or maybe just a simple "I understand" when in all actuality I don't understand.  In short, I guess really all I want is to just make a difference!

Granted, this list is a work in progress (as am I) and I will probably have ample opportunity to add to it throughout this next year.  I still desire to be healthy, to manage my finances.  I still possess the desire to see at least one book in print.  There is still so much that I would like to see and do before my time here is through. Will I accomplish it all? Perhaps. What should matter is the things that are of true importance--such as what was listed--are what gets accomplished and that they are accomplished with a pure heart and proper motives.

Have a blessed  New Year!

Morning Coffee, Morning News, And A Nasty Message

I've been in a struggle these past couple of days.

I've struggled with whether or not I should share something in this blog lest others be hurt and, God forbid, offended. After all this blog relays the life and misadventures of an autism mom and the potentially offensive piece doesn't exactly relate to autism. Therefore it may not have a place here.

You know what? Screw it! Here it is. The chips can fall where they may and I will take my lumps if needed!

If you have been anywhere on the internet freeway lately, I will find it safe to assume that you have heard, seen, and read the controversy surrounding A&E's "Duck Dynasty" patriarch Phil Robertson and an interview with GQ. I have neither the time nor the energy to go into the details. The long and short of it is that when asked the question, "What, in your mind, is sinful?" Mr. Robertson gave him an answer:

                 “Start with homosexual behavior and just morph out from there. Bestiality, sleeping around with this woman and that woman and that woman and those men,” he says. Then he paraphrases Corinthians: “Don’t be deceived. Neither the adulterers, the idolaters, the male prostitutes, the homosexual offenders, the greedy, the drunkards, the slanderers, the swindlers—they won’t inherit the kingdom of God. Don’t deceive yourself. It’s not right.” (http://www.gq.com/entertainment/television/201401/duck-dynasty-phil-robertson?currentPage=2)

He goes on to add, including himself in this laundry list-- “We never, ever judge someone on who’s going to heaven, hell. That’s the Almighty’s job. We just love ’em, give ’em the good news about Jesus—whether they’re homosexuals, drunks, terrorists. We let God sort ’em out later, you see what I’m saying?” (http://www.gq.com/entertainment/television/201401/duck-dynasty-phil-robertson?currentPage=2)

The end result led to outrage from the LGBT community and Phil Robertson being suspended from "Duck Dynasty." 

Now, let me make something clear right out of the gate. I am a Christian. I am not a perfect Christian. I am not even a "good" Christian," if either even exist. What I am is an individual with more flaws and scars than anything else, who has seen struggle and hardship more than I care to. What I am is an individual who has labored under the delusion that simply because you love someone, you are not obligated to accept and embrace everything they do. I am also someone who has labored under another delusion that simply because you differ with someone, however that may be, you still show love, mercy, and goodness to them. I am a Christian and because I am, I do not, cannot, and will not support same-sex marriage or the gay lifestyle.  This does not mean, however, that I give my stamp of approval to mistreatment and abuse of any kind. Let me also add that all those who are in relationship with me have known this about me from the beginning. It has never been a secret!

I made the mistake of sharing a couple of pictures and links that supported Phil Robertson. This is where I went wrong. What a surprise I got the following morning.

Most people start the day off with a hot cup of coffee and the morning news. Others have breakfast on the fly. How did my Friday morning start? With a message in my inbox that went a little something like this:

                      "You have proven who you are. A fake Christian bigot! I am unfriending you as I do not need hateful bigots in my life!"

Talk about tolerance!

I lost count of the number of times I read this message. I was stunned each time my eyes fell on the words "fake Christian bigot." I was floored to say the very least. I ended up blocking this person but not before I copied and pasted his message into a post that was shared on my timeline. I am not quite sure what he was trying to accomplish, if he was trying to accomplish anything at all, but if he had something in mind, it backfired in a major way!

I spent a good part of the morning in tears. Words hurt, especially words of that magnitude. As the day went on, I went from being in tears to finding myself spun into a level of pissed off that I haven't been in a long time! How dare he!

First of all, I know what it is to be different and to be bullied and mistreated because of it. I didn't know what it was that made me different and I have gone back and forth with feelings of relief to wishing I had known. I know what it is to have words cut to the very fiber of my soul. I'll let you in on a little secret, if you haven't already figured it out; words take longer to heal, if they ever really do. I know what it is to be physically abused while others looked on and oddly enough "never saw a thing." I know what it is to be written off by the ones who were supposed to be teaching me, helping me learn. 

I also know what it is to watch my own children go through these very things, feeling helpless as its happening because no one is listening or taking me seriously. I know what it is to be excluded, a misfit. Because I do, I've learned how not to treat others. I wish I could say I hit the mark each and every time throughout my life but sadly I didn't. I've kept going though. Isn't that what counts?

I'm 44 years old with more years behind me than in front of me and I am fed up to the gills with being told what I have to accept simply because the rest of the world tells me to and if I don't I'm "hateful," a "fake Christian bigot." I am maxed out with being told that I'm intolerant if I don't embrace what I know goes against my convictions. I am worn to the bone with being told I have to water down my convictions to the point of silence for the comfort and happiness of someone else when these same folks will not do the same for my comfort and happiness. 

What I want is fairly simple and that is--

             --to love God and grow closer to Him than I have ever been

             --to live by His word

             --to love others

             --and to let others see Him in me.

That's it! 

I am not going to show His love by hiding in a corner somewhere.

At the same time, I can't let the world see Him in me if I have more of the world in me than I do Him!

When Momma Has A Meltdown: The Saga Continues

It's getting to be that time...

I don't know how it all crept up so soon but it's around the corner....

No, I am not referring to Christmas (although that too is sneaking its way to the front door).

I am referring to that annual gathering every autism parent must participate in but so very few look forward to with eagerness and enthusiasm...the IEP. Individualized Education Plan if anyone unfamiliar with autismese is reading this. 

Overall, I can't complain about the IEPs we've attended for Matthew. From the beginning of this leg, he's had a support staff that is beyond excellent, who has worked with him and not against us. It's been wonderful to actually have a team of people who keep lines of communication open and who recognize the young man behind the diagnosis. With his brother, the experience was just the opposite.

Unfortunately, it's because of this upcoming event I had the mother of all meltdowns.

Since Matthew is now 18-years-old and, for all intents and purposes, an adult, Papa and I have had to go through the process of obtaining guardianship, something I never would have dreamed I'd be doing, especially for my own son! But we filled out the paperwork, met with the professionals, had our day in court, and guardianship was approved and granted. So of course, given his age and being in the adult/transitional program at his school, yet another assessment had to be filled out. An assessment rating which daily living/social/and whatever other title you want to put on them skills he possesses and whether or not these things can be carried out independently. Kind of like a 1-10 scale except this is a 0-2 with 0 being he cannot and 2 being he can do independently. Okay..I got through this portion all right.

The last section of the assessment had to do with future happenings; what type of school did I want to see him attending? College? Trade school? Vocational school? Another type of school? And for him to meet this goal, he would need___________________________________________ and I was to fill in the blank. There was a section like this for employment, education, where he would reside, how he would get from point A to point B, what social/community happenings would I like to see him taking part in. Of course, to meet these goals, he would need_______________________________________________________.

It was at this point where Momma completely lost it!

Before I ever became a mother, I used to imagine what it would be like to have children. I visualized what they looked like from the color of their hair to their eye/skin color. I dreamed big dreams for them and wondered what their lives would be like, where their hopes and plans would take them. Once the boys were actually here, those hopes and plans and dreams only magnified.  I suppose that is how it is for most of us in the "Mommyhood."

Then autism came a-calling and all of a sudden these hopes and dreams and visualizations seemed to fly right out the window. These big dreams I used to dream no longer existed. Now it was just a matter of getting him from one day to the next. That was it. Nothing more, nothing less.

I stared at that assessment, tears pouring down my face, not knowing how to answer the questions/statements. These were things I stopped thinking about fourteen years ago when life as I knew it came to a screeching halt. These were ideals I have not so much as entertained even as Matthew has progressed. I have frozen at the very idea. My heart broke once again reading through each of these plans...hopes....dreams....ideals...things every parent wishes for their child and so many never get to realize.

It's been a little more than a day now and I have had a chance to regroup. I will most likely pick this assessment back up, return to that section, and make a valiant attempt at answering. I may do it through tears. I may do it stone faced. I may have to fake my way through somehow. I'm not really sure at this point but I know somehow it will be done. It has to be done.

I just wish I knew how...

One Flew Out Of The Cuckoo's Nest

Life in the Clubhouse changed considerably yesterday.

We moved our oldest son to college.

I knew this day was coming. I knew it was looming. We talked about it. We planned for it. We even went shopping for it. What I didn't expect was that it was going to come so stinking fast!

You tell yourself your child leaving home is inevitable. You tell yourself it's a part of life, that kids are not meant to live with Mom and Dad forever (under most circumstances anyway), and of course it's a new beginning for you as well as for them. What seems to be missing from the equation is the part where you cry until your eyes are swollen shut and snot is hanging in strings from your nose.

You can pretty much guess how I spent the better half of the day, can't you?

I told myself all of the aforementioned. I told myself this was his chance to strike out and try his newly earned wings. I told myself the last thing in the world I wanted for him was to find himself earning less than minimum wage in a job he's miserable at. I told myself he had too many God-given gifts for them to be wasted here. I told myself all of this. What I didn't tell myself was I was about to feel my heart being ripped from my chest.

Jordan, my first born, took 36 hard and difficult hours to get here. He was my Simba, my Munchie, my source of zingers and one liners that stunned and amused us beyond description. My dinosaur lover, he could tell you which dinosaur lived during which time period, something that at the age of 44 I still can't do. My train connoisseur, he spouted off details of different types of locomotives and what jobs they would perform. "Green Eggs And Ham" was the first book he read to me at the tender age of 4. Little Bear, Doug, Arthur, Thomas the Tank Engine, Blue's Clues, The Puzzle Place were among the shows we would laugh and learn with. 

This same little boy morphed almost over night into a young man whose interests broadened to include computers, Sonic The Hedgehog, big cats, and prehistoric creatures. At an age when he should have been a typical teenager he took on the role of brother/father to his younger siblings, growing fiercely protective of his mother who was going through her own circles of hell and stupidity. School issues, bullying issues, personal issues....oh yeah, we went through!

I watched as he was getting his things situated in his dorm room, this 6', husky young man with  stubble on his chin and shadows of that little boy woven into his features. My heart ached. The tears came. And I didn't care who saw!

My baby is no longer a baby.

My little boy is now a man. 

I remember my own mother telling me that your job as a parent doesn't end when the kids are grown; it merely goes through different phases, as though you're meeting that child for the first time all over again. I never understood what she meant.

Now I do!

Miracle Run Mom...And Then There's Me

As I'm writing this, I am watching a movie called "Miracle Run." It's a true story about a single mom raising her autistic twin sons. After getting the kiss off from her boyfriend ("It's not fair, I didn't sign up for this! I can't do this!"), and butting heads with the school district to the point of slapping them with legal papers, a special education instructor approaches her and works one on one with the boys and her, teaching them the basics...colors, shapes, sounds, words, speech, daily living skills. The boys eventually go on to high school, with one boy joining the cross country team and winning the championship and the other boy auditioning for a music school...over the phone! Their mother, Corinne Morgan, remarries (her handyman) and eventually starts The Miracle Run Foundation. 

I love this movie.

I hate it too.

Don't get me wrong. It's a painfully accurate account of what no doubt so many of us experience as autism parents. Shock, grief, denial, bargaining, depression, and eventually acceptance. Judgmental glances and holier-than-thou comments made by sanctimoms who have no clue what you're going through. People who you think are in it for the long haul suddenly bail on you and leave you feeling even more alone and disillusioned. Schools stick your kids in a corner where they don't have to be dealt with. You are blamed because you didn't recognize the signs (neither did your accusers!). Life as you once knew it is suddenly turned upside down and you are made the master of juggling each and every detail, even the ones that seem small and insignificant. I can't make it through this movie without crying.

At the same time, I can't help but feel some pangs of guilt when I watch it. Why? Because Corinne seems nothing short of a rock star! A warrior mom! She fights for the lives of her children, sparring against the medical field as well as the educational system, settling for nothing less than a normal education and a normal life for her boys. Her efforts paid off. Both of these young men finished high school and went on to pursue college careers. She started a foundation. A foundation! How do you DO that?

Did I not do enough? Did I not try hard enough? Did I wait too long to have Matthew diagnosed because I was not ready to accept it? Did I just ignore what was right before me the entire time because I didn't want to be uncomfortable? Did my own missed diagnosis come into play at all during  all of this? 

I know I shouldn't compare myself to Corinne Morgan or to anyone else on or off of the spectrum because we all have our own journey, our own experiences. Sometimes though that is easier said than done. 

I look at this remarkable woman and I see all that she accomplished. I see her trials (well, the trials represented on the small screen anyway) and I see what she and those boys came through and I can't help but ask myself, "What am I doing wrong?" 

Sometimes on this journey of autism, not to mention life, I feel small. I feel insignificant. I sometimes wonder if anything I have shared or done has made any kind of impact or even the tiniest shred of difference. I know too that it's not about me. I guess I just want to arrive at the end of my walk here on earth and know that somehow, someway, my life made a difference.

That's all I want.

To make a difference.

A Letter To The President

Earlier in the week a story came across my news feed about a 13-year-old autistic boy who has been bullied. Physically bullied. Verbally bullied. His autism was even being mocked online. 

The story went on to say that the boy's school authorities had been flooded with 100 or more e-mails from parents....DEFENDING THE BULLIES!!!!!!!!

Wait a minute....

Let me see if I can get my head around this.....

Here is a boy, a 13-year-old boy with autism.

His physical movements are being mocked online for all of the world to see. He's been pushed and shoved and who knows what else!

Here is a quote from the lips of the young boy:  “People tell me to run into things and I don’t really like it,” said Null, who also has ADHD. “And I tell them that I don’t want to and they just laugh at me, whenever I do it.”  (http://thinkprogress.org/health/2013/11/21/2979471/autism-bullying-iowa-school/)

And here is a quote from one of the parents who are in defense of the bullies. I still can't get over this! “Three-fourths of this stuff he brings on himself,” he said, “and probably a fourth of it is bullying that shouldn’t be going on.” One implied that he was asking for it: “This kid has done things to get people mad that I think he could probably control.” ( http://thinkprogress.org/health/2013/11/21/2979471/autism-bullying-iowa-school/) 

In a nutshell--"he was asking for it!"

Having been through this type of scenario myself, as a kid and as a parent, I decided to do some looking into the stats and numbers of bullying among the autism community. What I learned saddened me. What saddens me even more is the ignorance that continues to be shown toward autistic individuals. Autism and its related disorders are the hand(s) dealt to families throughout the world. It does not give a rat's hat whether you pull in a six figure income, what your race, color, creed, religion, etc. are. What your last name is does not come in to play. The cause or causes for autism will no doubt be a bone of contention long after I am just a memory. Autism is not a choice. We the parents did not choose it. And without a doubt the individuals with autism did not choose it! 

This is a little of what I learned. 63% of students with autism are bullied. These are kids ages 6-15. Kids like this young man as well as my son who deal with ADHD  on top of ASD are more likely to be bullied. 40%....40% of ASD children have been punished by administration as well as school staff for meltdowns or outbursts that have followed bullying. 40%!!!!!

Zero tolerance?

Yeah...right....for who? 

I sat down and put these facts, figures, and issues in a letter to President Obama. I pleaded with him as a parent as well as an American. I pleaded with him to try and imagine if one of his daughters were victimized for something she could not control or help. I pleaded with him to try and imagine the pain and helplessness he would feel watching his babies hurting. I just plain pleaded with him. 

It has to stop!

When Momma Has A Meltdown

This week has been rough. 

The thing that I haven't been able to put my finger on is exactly why this week has been rough. Life has happened like it does on most days. 

Oh! Maybe that's it!

Why is it that most days life can go on and on with its foibles and frailties and it doesn't seem to affect you while other days a butterfly breaking wind is enough to send you plummeting face first into the abyss?

This past week has been my butterfly breaking wind.

We've had some struggles as of late. Financial struggles that, while I don't wish to lay out in graphic detail here, are to the point now where some decision making has to be done. Rent that is more than 50% of our monthly income, utilities (specifically electricity and heating) that are more than your average car payment, a vehicle that has been coming apart little by little, gas for the aforementioned vehicle so that the fam and I can continue to get back and forth as needed, and the ever looming possibility that there is to be a move in our not too distant future. These things, conspired with a hubby that's been knocked for a loop with a nasty sinus infection, getting the oldest mancub prepped and ready to leave for school in about another week and a half , me fighting my own brand of cold, and two younger kids that seem to think it's a day without orange juice if they are not at each other's throats from the time their feet hit the floor at 6:45 each morning until 9:00 at night when it's time for them to head upstairs to bed, have just worn the fabric of each one of my nerves to the brink of nonexistence. And of course, on the work days, what kind of a day would it be if either the customers or the co-workers weren't treating you like you're a complete and total moron? Anyone? Yeah, I have no idea either!

And then, as if all of this isn't enough, on Thursday I got a call from the kids' elementary school. The call that no parent wants to get. The call that says, "Your kids have head lice!" Talk about the cherry on the cake of what was otherwise a red letter week! Shampoos, sprays, vacuuming and washing everything that could be squeezed into the washer/dryer, nit combs and Cheyenne screaming every step of the way. Oh yeah, good times!

Suffice it to say, I ended up having a meltdown that made anything my boys ever whipped up look like a Sunday School picnic. I screamed. I cursed. I wept. I pulled tighter and tighter within myself. Every nerve in my body was wide awake and felt like they were on fire. At that moment I was ugly. I was whipped. I was defeated. 

When I was learning about my boys' diagnoses, I read a lot about meltdowns before I actually witnessed them and it didn't take long to decipher what was a meltdown and what was a tantrum. I learned what to do to draw them out and bring them back. I learned how to redirect them. I never learned what to do when Momma has a meltdown. Truly this had not been my first one. I'd had many before and I'm sure I'll have even more after. This one, however, just shook me. 

Perhaps I'm being too hard on myself. I sometimes forget I'm not called to be Super Girl, Wonder Woman, or any other brand of super hero. I'm just supposed to do the best I can. Some days, more than I care to think about, that doesn't seem like enough.

I get tired of wearing my poker face when inside I feel like raw hamburger. I get tired of smiling through my problems when want I want to do is sob in a corner somewhere. I get tired of being brave; sometimes I want to chuck it all and run away. I grow weary of opinions and judgments that come my way and the ones sending them my way don't know thing one as to why I'm where I'm at or why I do or don't do things a certain way. I just get tired.

Giving Thanks Part 1

I woke up this morning to snow. Snow trickling down and just lightly dusting the ground and tree tops. Ugh! I am so not ready for winter. The two younger kids need new snow duds. The van needs better tires. And I just need to not be out in it.

Well...that sounded good....

I really do love this time of year though. I love the fresh crispness of the air and settling in with hot coffee (or taking it on the go as I many times have to do).  The Gaslight District in Petoskey is decking the halls as they do and to say it's beautiful is beyond description. Leaves crunch beneath my feet. Trees and plants have surrendered themselves for another year. Some days it all seems cold and lonely. Other days it's like the world is resting.

November is the month of hoodies, hot chocolate,  pumpkin pies and apple cider. It is the month of turkey dinners, overly crowded houses, and getting up at dark thirty the next day and literally battling total strangers for that "can't-miss-gotta-have" sale. It's also the month of giving thanks. It's supposed to be anyway. I just wonder why one day out of the year is set apart to be thankful? Shouldn't thankfulness be something that we do daily?

Each year at this time I challenge myself to find at least one thing each day for which I am thankful. Some days are easier than others. Some days it's easy breezy to say thanks. Other days are a struggle and I have to think long and hard for something to be thankful for. Life is hard. Times are tough. It just seems like there is no rest to be had and no end in sight. What is there to be thankful for today?

And so I am challenging myself again to take a moment each day to say thanks. What will I find at the end of that challenge? 

That's.....another posting!

Seriously?!?

I've shared through The Puzzle Club on Facebook that, since Matthew is now 18, we are in the guardianship process. It's definitely uncharted waters and I am treading water every step of the way. There is more involved than I realized; getting him set up with his own bank or credit union account, meeting with a court appointed attorney prior to the hearing, and, of course, the hearing itself which is coming up in less than two weeks. I'm pretty sure I am not the only autism parent to be going through this process and I think it's safe to say that, while it is a necessary thing, it's also a difficult thing. Who ever imagines having to become a guardian to your own child? I know I didn't! 

Along with that, I also never imagined I'd be getting looks of pity while setting his account up at the local credit union. Please don't misunderstand me; this teller was a sweetheart, kind hearted, friendly, all of that. She also had "that look". If you are an autism parent you have seen "that look." It is a look that says, "You poor, poor thing! Whatever are you going to do?" or "___________________________________________" (you supply the phrase. I've no doubt she meant well. However, I've been "pitied" so much over the years that I am almost numb to it. 

If "that look" weren't enough, I then took Matthew to Wal-Mart so he could cash in his empty pop bottles. As we walked in, I saw one of my cousins in the entry way waiting to be picked up. She's an older cousin, a month younger than my mom. We got to chatting and I was telling her what all was going on and going through the guardianship process. Her question? "Is there a home he can go to?"

Okay...did I just hear what I thought I heard?

Give me a minute....

I did? I did hear that?

Are you freaking kidding me? Is there a home he can go?!? For real?!?

I must have shot her a look of some kind because her expression seemed to change almost instantly. 

I mumbled a generic answer. I have no clue what . As usual, it came to me later what I would have liked to have said. Just a simple sentence, nothing fancy, nothing elaborate.

Yes, there is a home he can go to....OUR HOME!!!!! 

The Look

Ira and Matthew came to pick me up on my lunch hour yesterday and we ended up at Subway. While we were eating, something must have tickled Matthew's funny bone because he got up from the table and was hopping and dancing around the entry way, stopping occasionally to stim excitedly.

Nearby there was a little guy, probably around the age of 3, 4 at the latest. He watched Matthew laughing, hopping, stimming, and his eyes were like saucers. I knew the look. I should. I've seen that look countless times over 14 years. The kid was scared. Not quite lip quivering, crocodile tear crying, from the toes up screaming scared but scared just the same. I guess I can understand. This little guy probably reaches one of Matthew's knees and here he's watching this big kid acting...well...weird...different..

I watched this little guy, wondering if I should say something or if I should continue noshing on my sweet onion chicken teriyaki on flat bread and let things be as they were. Then I watched Matthew with his ear to ear smile touching his fingers to his lips as he does when he's excited. He took a step in the little guy's direction and the little guy seemed to freeze where he stood. I've seen that before too. So I spoke.

"His name is Matthew," I said.

The little guy looked at me, still kinda fearful.

"He wants to say hi," I said.

No sooner had I said that, Matthew stopped stimming and held out his hand. He gave this little guy a sideways glance and said, "Hi,"

The little guy, still looking fearful, took Matthew's hand, gave it a shake, and went on his way.

No meltdowns.

No terrified screams.

No....anything.....

They shook hands.

That part was great.

It was the look...the look I've come to memorize since Matthew's diagnosis. 

The look of fear.

The look that says my son is to be avoided.

The look that says my son is an animal.

The look that says my son will never be like other young men his age.

The look that tears my heart out. 

Yes, I know this look. I am familiar with this look. I can describe it from memory.

Am I used to it after 14 years?

No.

Will I ever be?

Not likely!

Me? Perfect?

I got a private message on Facebook this past week from a college friend. She had seen a post I shared that dealt with why my page is basically plastered with links, pics, and all things autism. Through this post she learned that...guess what? I have Asperger's!! 

Her message kinda threw me for a loop. For one, she asked how I was diagnosed, if I didn't mind sharing. She'd read the accompanying article that was attached to my post, listing the traits of Asperger's  and commented that most of the people we hung with in college could or would find themselves identifying with most of the statements near the end but that she "refused to believe we all have Asperger's." 

This, believe it or not, was not what threw me.

She started off her message by saying," I saw your post saying that you have Asperger's. I never would have guessed that. You always seemed perfect to me."


Did she really just say that?

"I never would have guessed that."

"You always seemed perfect to me."


Sooooooo.........what exactly is this supposed to mean?

Am I, a 44-year-old woman with Asperger's, somehow broken and defective? Am I somehow less of an individual because of this "title" that I bear? Am I supposed to have a certain look to me? Am I supposed to carry myself in a certain way? Am I supposed to behave in a pseudo;"Rain-Manesque" manner?

Am I no longer a person because I am autistic?

Pondering Uncertainty

So here I sit on the eve of my 44th. birthday. Coffee has been my beverage of choice today (more so than usual), having been stirred from sleep at 4:45 this morning by a phone call from the Clubhouse VP. Anytime you get a call at 4:45 a.m....well...chances are it's not Stevie Wonder calling to say he loves you!

He was being taken by ambulance to the ER after collapsing in the middle of doing the end-of-shift paper work (he works front desk at a local casino owned and operated hotel). As luck would have it, he had taken the van to work which meant I needed to find a way to get to him as well as to it. Like any mature woman on the 50 side of 40 would do, I called my mom and dad. I told them what was going on and asked would they please pick me up and take me to where Ira was. Within a half hour or so they were here. I was never happier to see their headlights in my driveway as I was then. 

I spent the trip into town praying...and crying...and praying some more...and crying a whole lot more. Matthew, a daddy's boy through and through,  had come along for the ride while Jordan held down the fort at home. Since only two people were allowed back in ER, Mom sat in the waiting area while Matthew and I went back to where Ira was. He was resting on one of the standard Stryker beds, hooked up to an EKG machine, an IV in the top of his right hand. He opened his eyes--"There you are!" Handing me the keys, he told me he'd be able to come home, he was just waiting on some tests to come back (Cat scan, EKG, etc.) Matthew waited there with his dad while I went to fetch the van. Matthew was smiling and yet wore a worried expression too. He knew his daddy was in the hospital before we even came in but that was about the extent of it. Within minutes Mom and Dad took me to the hotel where the van was parked and I was back at ER. 

Doc came in after a while to let us know that the tests came back fine, as it seems they do. Being a diabetic, his sugars were through the roof, 356 down from 382. Doc glanced at me and let me know that someone had to be with him throughout the day to help check his sugars. Suffice it to say I called in, like I'd have done anything different.

Once we were back home, Matthew seemed a bit more at ease, as was Jordan when he saw that all of us were home. He was his usual laughing, dancing, "'cising'" (Matthew's word for "exercising") self. He took turns cuddling against us both but, like usual, he leaned on his dad the most. 

All of this led me to fast forward to a not so distant future when Dad and I will no longer be here. It's not a pleasant thought, one I don't like to dwell on but pushing it to the back burner of my brain is not going to stop the hands of time from moving forward. We are getting older and one day we will die. When that happens, what will happen with the kids? Where will they go? What will they do? Will they be taken care of? Will they be loved, supported, and nurtured? Will they be handled with dignity and respect?  What will...where will....how will....ohhhhhh.....it's too much at times!

18 And Life

 Tomorrow my son Matthew turns 18. What teenager doesn't dream of that age and what it represents? Matthew knows he's turning 18; ask him and he'll tell you with that big, toothy, joyful smile that he has come to be known for. Does he know everything that seems to go with that age? Good question. 

I sat with my mom over a cup of coffee earlier this evening, tears pouring down my face. My mom, God bless her, sat and listened as she is so good at doing. Sometimes it is so hard to keep it all together. Sometimes, even at my age, you just need your mom. Tonight I needed my mom!

I looked at Matthew, a strapping 5'10,' 216 pounds, broad-shouldered, butch-cut brown hair, mustache, and eyes that sparkle and pierce at the same time. I looked at him, looked back at my mom and said, "Autism sucks!" I pored over things that Matthew "should" be doing--senior pictures, hanging with friends, school activities, the college thing. I so prayed for families for him and his brother, kids and grandkids. At this moment, it looks as though these are to remain prayers and shoulds. And I am angry.

Mom listened and then asked me a short but pointed question. "Angry at who?"

I stopped and thought about that.

Who or what am I angry with?

Am I angry with Matthew? Or Jordan? No. Frustrated and frazzled maybe. But how can I be angry at them for something that they didn't sign up for? How can I be angry at them for something that leaves them as frustrated and frazzled as I am?

Am I angry with those who are not on the spectrum? No. Again, it's rather hard to be angry at someone over something they have no say over. I do, however, get frustrated when I hear gripes over things that I can only wish for or pray about, things like a first word, first job, or living independently. Matthew's first words came 6 1/2 years ago. His first job hasn't happened yet. As for living independently? Who knows?

Am I angry with God? I used to be in the beginning, in part I think, because I had no clue what it was I up against. I didn't understand what autism was and wasn't, I had never dealt with it, never been introduced to it, and as a result I was left scared to death. I questioned what His purpose was for my boys' being on the spectrum. I questioned why them, why our family. I asked why, if He could speak the world into existence, He couldn't or wouldn't speak the word and my sons were "normal." No more autism. And I grew weary of hearing how "God only gives special kids to special people." I'm still weary of it. I know Matthew was created in the image of God. His name means "Gift Of God." Autism, however, was not created by God. Can God use it for good? Absolutely! 

Am I angry with autism? Well...yeah...if I am to be brutally honest, yes, I am. I am angry for what it has taken from my boys, their choices, their options. I am past angry with the judgments and mindsets that still seem to be prevalent out there that say our children are nothing more than "nature's mistakes" and should be put away somewhere. I am livid at the attitude that tells me that I am fighting my children if I dare to go after the dragon of autism. Guess what? I do fight! If I were given the ability to evict this intruder from my boys, you'd better believe I would do it and not think twice about it! Would I trade my boys? Not for anything in this world!

So I sit here tonight on the eve of my boy's 18th. birthday with mixed emotions. I grieve and yet I celebrate. Most of all, in the midst of the grieving and the celebrating, I love my son with every fiber of my being and will continue to face the dragon that is autism until I draw my last breath. I will grieve from time to time. That I am sure of. I am also sure that I will still celebrate and I will still love.

Autism Sucks....

There is a general consensus around the social airwaves lately which basically states autism sucks. It not only sucks, it sucks dirt! And I am making it unanimous!

Let me make this clear right now right off the bat. While I have moments of downright despising autism, my kids are another matter! My kids are the very air that I breathe. They are the reason I do what I do from my cashiering job at a local home improvement box store to fumbling for the words on each and every blog posting. 

Autism, however, has been a cruel bedfellow. Autism has caused a beautiful young man (Matthew) to war within himself for seven years because he did not have the words to express what it was he needed, wanted, liked or didn't like. It left him unable to say when he was scared or sad, sick or angry, grunts and screams and flustered gestures his only means of getting his point across. Even then, it was still a guessing game.

Autism has caused this precious boy scream at me in frustration, to throw himself down and hit himself in the forehead, and to spit and bite his hands and arms. Autism has caused overloaded systems (his as well as mine), loneliness, isolation, unwanted parenting advice, rude remarks, and judgmental glances. 

Autism has caused another beautiful soul (Jordan) to be bullied, misunderstood, and judged. It has caused him to struggle internally, wondering what, if anything, was wrong with him. It has caused social awkwardness and knowing the right things to say and when (or when not) to say them. Where other young people have their circles, their groups, Jordan has himself, his computer, and his cat Daisy. Oddly enough, he seems to be okay with that; better than I have been anyway.

I look at both of my boys and an old familiar ache settles in. Matthew, who turns 18 in five days, should be having senior pictures taken, scouting colleges, hanging out with friends and quite possibly dating. At least that's what the NT (neuro-typical for those who may not know the lingo) world tells me. Jordan has overcome a lot but I still worry about him. Will he be okay when he leaves for school in December? Will he be able to manage his schedule, his money, his everything in between okay? 

Did I mention that autism sucks?

What We Need...

I'm struggling to find words tonight. My heart feels like it weighs a ton. 

I learned through a dear friend, also an autism mom, of a fellow autism mom who is at this moment lying in the hospital along with her precious daughter. This mom attempted to end the life of her daughter as well as her own. 

I do not know this mom. I have never met this mom. I have never heard of this mom until two days ago when the story broke. I have never walked her path nor have I tried to squeeze my feet into her shoes. Admittedly, I am still attempting to get my head around what had happened that led to the events of Tuesday, September 3rd.

In short, I'm struggling to comprehend the choice she made. I don't understand why what happened happened. Not completely.  

When you are a parent, you want so much for your children. You want them to take a better road than you did and to learn from the mistakes and choices you made along the way to where you are. You sweat and struggle and sacrifice to help them along on their journey. 

When you are an autism parent, you also want much for your children but the road you're on does not stretch the same as it would otherwise.  We go nose to nose with schools, fighting for inclusion and safety in the classroom. We stand elbow to elbow with educators who would otherwise deem us the bad guys for expecting what every child deserves to have and instead place our children in a corner with paper and crayons and forget about them; after all, what can be expected from children such as ours? We stand toe to toe with insurance companies who would deny us the coverage we need to give our children the support, the therapies, and overall services not only needed but also deserved. We confront bullies, going after the Goliaths that lurk many times in our front yards. We fight loneliness. We fight isolation. We fight ignorance. We fight the fear of an uncertain future for our children. The sad reality is, too many times, we fight alone.

There have been many times, more than I care to recall, where my elastic has been stretched beyond the point of breaking and I have lashed out in ways I could never begin to imagine. Taking their lives along with my own was never part of the equation yet at the same time I was ugly, someone I don't recognize. While my kids may have reached a place of forgiveness, I have not. Will I ever reach this place? Who knows?

I want to learn more about this mom and her daughter. I want to learn their story and share it. We need to know each other's stories. We need to know when someone in our community is stretched to the point of breaking and stand in the gap for them however possible. We need someone to listen. We need someone to hear. Once in a while we need to have our tears wiped away with the reassurance we will make it! We need each other! We need to know we are not alone! 

Much Ado About Bullies....

This weekend makes the last weekend before sending the kids back to school. Everywhere you look in the media there are ads toting the "Back-To-School" mantra, expounding endlessly on the latest gadgets and gizmos and fashion fads that are guaranteed to get Susie and Johnny off on the right foot for a phenomenal school year. Everything we seem to need is mentioned in one ad or another. Everything except for one very important thing...

What about bullying?

Bullying is nothing new to the world of kiddom; I was bullied myself. I remember the name calling, the taunts, the jeers, getting reprimanded by my third grade language arts teacher for correcting my own workbook because none of the kids would trade with me, being picked last for gym class or anything resembling physical activity. I remember standing in the aisle on the school bus all the way home because no one would let me sit with them. I remember going to teachers and telling them what was going on only to hear, "Tell them sticks and stones." Which, by the way, I did. I remember going to the teachers again because the taunting isn't stopping and hearing, "Lorelei, nobody likes a tattletale." 

Somehow, in the midst of it, I pressed on and muddled through, developing a bad attitude in places. I didn't appear any worse for the ware until my own son was bullied.

Jordan was diagnosed with Asperger's at the age of eight. After Matthew's diagnosis I became a bit more observant of some "quirkiness" that Jordan had been displaying. I came across a few articles pertaining to Asperger's and, as I read it, was blown away at how much Jordan fit into these categories. After an evaluation, the diagnosis was confirmed. And that's when the trouble began.

Around this same time, Ira and I were going through our own issues (we were separated; also another post) and on top of this plus the Asperger's diagnosis, Jordan was said to have clinical depression. I made it a point of speaking to Jordan's classroom every April during Autism Awareness month and I stayed in touch with his teachers throughout. Unfortunately, as he went along, some of the other kids knew which buttons to push and how to push them and they did so in a way that 1) they would initiate the problem, Jordan would retaliate, and 3) Jordan would get in trouble. 

Now please don't misunderstand. Jordan was not an angel and I was not naive enough to think otherwise. My father was a teacher and I knew from his experience as well as my own that if someone else's little darling was capable of pulling stuff, so was mine. But I also knew my son well enough to know that he didn't just do something because the wind was blowing; there was usually cause and effect. Apparently it was acceptable to shove him into the girls' bathroom and then tell the principal/vice-principal that "he just wandered in there, they didn't know why." It was acceptable to call him a "fat motherfucker" as he walked down the halls in between classes. Apparently.

And so I am getting phone calls and disciplinary reports on a daily/weekly basis. Because I have the audacity to question and say, "What happened that led to......?" I am the bad guy and not taking the situation(s) seriously. So of course it should have come as no surprise that on one fine afternoon, one of the boys that had been bullying Jordan was in the wrong place at the wrong time. Jordan, who by this time had internalized everything that had been happening and had gotten his gut full, dropped this kid. Dropped meaning he kicked this kid right in the family jewels. And the school was kind enough to take this along with the phone calls and disciplinary reports and ship them over to probate court. My son was being brought up on assault and battery charges.

No parent ever imagines this. Not in their worst dreams could they. But it was happening. My son was being charged with assault and battery. Court fees, fines, attorney fees (we had a court appointed attorney), none of which we could afford. Community service, meeting with a P.O., going through a court mandated class which, to me, was a glorified DARE class for ten weeks...these were our reality for nearly six months. I remember sitting with Jordan in that court room before the Judge (who was so kind to us) with my stomach in knots wondering what was going to happen to my boy. I put my Poker face on and muddled through but my insides felt like raw hamburger. I was scared, sad, and pissed off all at the same time!

I remember asking Jordan, "Why didn't you tell someone what was going on? Why didn't you tell your teachers this was happening?" Jordan looked me square in the eye and said, "What good would it have done, Mom? They wouldn't have believed me anyway." What do you say to that?

We somehow pressed through. We attended the class and graduated. Jordan met with his P.O. who was, I found out, one of the sweetest ladies I'd ever met. He dove into his community service with both feet, working so hard that by the time it was done, he was off probation three months early which meant no more money was owed. Good thing too, because I struggled to pay what I did. Jordan, however, was not the same and I knew if he stayed where he was, he'd be a statistic. 

In the midst of all of this, I had called a local charter school and asked about enrolling him. I liked the curriculum, the smaller class sizes, and it sounded like the right fit for him. I pulled his records from the middle school and faxed them over along with the application. I got a call from them one month later telling me there was an opening available if we wanted it. I accepted and Jordan never went back to the middle school. He graduated from Concord Academy Petoskey in June 2012 and will be attending Michigan Career & Technological Institute for web design this December.

Jordan was one of the lucky ones. Other young people aren't. Bullying is on the rise and with it the suicides of those being bullied. Just recently a 15-year-old student in Greenwich, Connecticut killed himself...on the first day of school!!!!! His classmates believe bullying played a part in his death. There are so many more that I'm sure go unheard of.  My question is, why are young people basically being bullied to death?

Sooooo..............here is my question for anyone who has stayed with me this long...............

How then do we equip our children to deal with the bullies that we know are out there? How do we equip ourselves? How do we help our children to see that it does indeed get better?