Let Him Be…

The distance we have mentally traveled in the past 12 months has far exceeded the actual physical mileage of our road trip.

We, as a team, have come so far in our understanding of this complex life we are navigating.  Owen has come to terms with the fact that he does indeed have Aspergers and Sensory Perception Disorder and DDMD. He no longer fights the diagnosis, or the label. He is getting used to the idea that he is different, but in a good way.

I have reached above and beyond for answers, help, support groups and understanding. I have come to the conclusion, that the most help I will ever receive will be from the Aspergers community I have met online, and from my very own family.

To just “let him be whoever he is” is pretty much my new and forever motto.

We have come so far in our understanding of each other. Our communication is not the normal communication of an 11 year old and his mother. It is that of a very intelligent, adult male, and his dear, cherished fan and friend.

I realize this is not an idea that will be accepted by 90% of my friends and family, and I acknowledge how strange it may sound to people that do not live our situation and are a part of our daily lives. And I’m not asking anyone to understand.  I am just stating how life is in our home.

He still has rules, a schedule, a mother. However, it is different in many other ways.

He is adjusting well to his new medication. It has helped him to be able to regulate his moods and his anger.

I no longer feel fear when he becomes angry.

We are back on a Home school schedule, although my teaching style has been changed a little to fit with his new maturity and choice of subjects, and we are in the process of writing our own curriculum for homeschooling in Political Science and Humanities. He is my co-author on several projects, only to probably surpass me before I ever become a published author myself.

He is a beautiful, intelligent young man. I am so proud to be a part of all the great things he will do within his lifetime.

Home

We have been home a total of 3 full days and four nights now. I feel I can safely update to a minimal point, anyways.

So the entire reason for going was to help Owen regulate his moods.  To help him be sad without being suicidal,  and to help him be angry without being violent.

This goal, I truly feel, was accomplished.

However, I am a little disappointed with the treatment of Owen regarding his Aspergers and autism.

I feel maybe the hospital did not know as much about Autism as they claim to on their website. But, I suppose that’s where my education and all the research I have done, will come into play.

As for Owens behavior since we have come home, he seems better balanced, able to think before reacting, and just has a general happier outlook. Mission accomplished.

They did diagnosed him with DDAD, sensory perception disorder, and depression, so with those things diagnosed we are willing to follow up in Amarillo with therapy and psychiatrist .

But, I’m not sure how much further we are willing to go to investigate the autism and Aspergers, because we are so tired of being intruded upon by people that don’t know and don’t understand. At least for now anyways.

I am in no way trying to claim to know everything there is to know about Aspergers, but I am tired of people not understanding the complexity of this illness and how different each and every child is on this spectrum.

I guess what I’m trying to say is I’m just tired!

So, I’m going to hole up in my little cave once again, research, study, and just be the best mom I possibly can be from my boy.

Now that we have many of the behavioral issues taken care of and medication on board, I feel now is the time to focus a little more on Owens overall well-being. We will be continuing on to the doctor for his physical problems, i.e. his heart defect, and his possible sinus mass/impaction and poor bloodwork results.

I  appreciate each and everyone of you! Y’all really helped me pull through those difficult nine days. I know many of you don’t understand and many of you can’t fathom what we have been through… but I also know many of you have gone through much worse with your own child or children and I appreciate your words of wisdom, your prayers, your insightful emails, and just your general friendship.

Even though I claimed extreme loneliness and the feeling of being abandoned during those nine days. I actually learned a lot about myself and I was actually forced to care for myself in a way that I have not been able to since Owens birth. I met new friends. I discovered some things about myself that have maybe changed my outlook and understanding. I  encouraged and helped a few people along the way, myself!  One girl, my waitress, I helped show how to find a job in the nursing field while going to RN school. The other,  how to continue with their dreams because they have no one else to encourage them.

I  was told over and over that I’m a good person. I was told by many that my children were lucky to have me. I grew as a human being, not just as a mother.

And for that experience I am thankful.

Because now, more than ever,  I actually feel I have purpose on this earth and that purpose is to be my children’s  voice, advocate, and guiding light.

I love you all!

I will update soon🙂

I’m a big fat loser!

so.

I spent all day in Mardel and Barns & Noble, thinking I would get to see my boy at 6:45 like usual.

WRONG

I walked in and was informed at the window that visitation had taken place at 2:00pm, since it was Saturday…. I was 4 1/5 hours late!!!!

I burst into big snoopy style tears, terribly distraught at the thought of Owen waiting for me at 2 feeling completely and totally abandoned by my absence.

How in the WORLD could I miss a visit?!?! I had even looked at my phone, at 2:00 thinking: “I can’t wait until visit at 6:45!”

So, i left him a book and a long apologetic note. Then went out to my car and called the boys unit. The nurse was NOT going to let me talk to him!! Stating “if you can’t make it to visit you don’t deserve to bother him tonight”. I cried a begged and finally my friend Lutrell heard the conversation on his end and told her to let me speak to Owen.

Owen got on the line and I automatically started crying again.

My precious boy. He not only calmed me down, but told me to go relax, rest up, stop worrying about him, and that he would see me soon and that would be the day he goes home.

I asked him at what point did HE become the 40-year-old and me 11? Lol

He sounds so much better! He was very articulate, very calm, happy and…. Well, mature! I can hear a change in even his speech patterns!

i see results!

I am so excited that results are visible, even after only 3 full days on meds!

i see a potential to a better, more calm life at home!

So, even though I am a scatter brained loser, my son is dealing with disappointments with a much better frame of mind.

Maybe he can teach me a thing or two, someday🙂

DDMD

Day 6

Disruptive Disregulation Mood Disorder (DDMD)

The mental diagnosis so far, is DDMD. This is a broad umbrella of symptoms and just a temporary diagnosis that goes along with his Depression and Aspergers.

We are both exhausted. The stress of being apart is really getting to us both. Owen is doing the very best he can, and I thank him daily for that, but I can still see and hear how completely it is wearing on him.

As for any physical diagnosis, we are at a stand still. Owen is refusing to have anymore blood drawn. I see this as his only means of controlling this terrible and frightening situation, so… I have decided it’s best just to take him home to Amarillo and let them do the testing there. The doctor here has already made referrals to the Ear, Nose, Throat Doctor and the Cardiologist. So we will just come home and proceed from here.

He has been placed on a few meds for depression and anxiety… But until we get the bloodwork done and back that is all I know to do.

i have truly appreciated every email, text, comment… Offer of support I have received. I have tried to make a point to respond to each of you, but my head is a jumble and at times a murky dark place. I do believe in the power of prayer, so by all means keep praying for Owen.

I do realize that much of Owens physical and mental problems are not my fault and just the way he is. But, as most moms know.. You can’t help but hurt and feel guilty that they are going through this.

I have felt very “alone” this week with just my thoughts and Facebook to keep me company… I have left my entire support group in the Texas Panhandle.. And without the daily hugs from Marissa and the pug, my sweet Nick just down the road, and my Daddy… I have had to sit and twiddle my thumbs alllllll week. Not good for a girl that already has a hard time opening up.  But, I don’t feel comfortable talking to others about all this either, so… I did this to myself.

i do love you all… I just have to process this alone.

Back to Owen, as far as I know… We will be headed home sometime Monday.  Thank goodness! 8 days is long enough.

Have a great Saturday.

❤️

Chilies

While visiting with Owens therapist, Kristen, during “family therapy”, I was told something interesting. Dr Tucker and Kristen have secretly dubbed Owen and I… The “1%”.

Evidently in Kirsten’s 10 years of being at Sundance, she has never met a duo quite like me and my boy. She said our love and the bond we share is special and amazing to watch.

She also asked me another question. “When is the last time you allowed yourself to just be… Alone and not worry, fret, or hurry home to Owen?”

I truthfully couldn’t answer. I seriously can’t remember the last time I was able to just… Relax.

She said that it is easy for moms of “special kids” to lose themselves in their child. They forget to take care of themselves until it is too late. That I needed to use this time apart to focus on relaxation and regrouping mentally, because the next phase will need me rested and ready to focus.

So, at doctors orders, I took myself to Chilies and had my favorite meal and a Blue Moon. I was ordered to sit there at least two hours and just relax and focus on my own thoughts.

Easy enough, right? Wrong.

I had not even placed my order, when in came a family of five. Mom, Dad, a boy and two little girls.

The mom, hands down, was the angriest person in the entire DFW area. She ranted & she raved, she fumed and she fussed…. She was loud and obnoxious, to the point that all us other patrons were looking to each other in despair.

Her anger was first directed towards her youngest daughter, who was obviously exhausted from school and kept laying her head down on the table. “What?!? Are you sick? Or just being a lazy little shit like usual?” The mother fumed.

Then it was the oldest girls turn, with the mother yelling into her ear about how the phone was going to get taken away if she didn’t decide on her order quick! The girl, used to it, shrugged said something that I guess was “burger” because that’s what they brought her, and put her ear buds back in and went back to the saftey of her iPhone.

By then Nick had called me and I was distracted for a few. But not long enough. Suddenly there was movement at their table, chairs went flying and mom was laying across the table slamming her sons head to the table. Words like “speck”, “trash”, “worthless”, “a nobody”, “piece of crap”  and ” you have no voice, you are an idiot!” were fiercely spewed into his face, and all because he didn’t do something or other.

I really don’t know what this boy did to be yelled at in public like this, but that’s not the point. The point is… He was told these things, and it did not come across to me as a RARE occurrence.

I was hurt, furious and very emotional after hearing this. But the worst was when he was taken outside, right by my window,  and spanked by the dad… For CRYING!

By now I am about done with my meal and pretty sick at what I had seen… Then Owen called. We spoke for just a minute, telling each other we miss each other and saying “I love you” over and over. I then told him that he is smart, beautiful and I am so very proud of him.

we hung up, and I glanced over and quickly realized the boy was there at the table alone, finishing his dinner, and listening to MY conversation with Owen.

I smiled at him, he smiled back… And this is our conversation:

Me: how old are you?

boy: 11, I’ll be 12 in November

me: oh! Cool, my son will be 12 in December.

me: so 6th grade huh?

boy: yes maam

me: you like it?

boy: not really, I have no friends, we just moved here.😦

me: aw, I’m sorry. Well you seem like a great kid, you’ll get to know people quick.

boy: I hope so…. So was that your son you were talking to?

me: yes…. He’s in a place getting help for his emotions. It’s hard on us being apart.

boy: (nodding head) ya I heard that.

(awkward silence)

me: so, I saw what happened awhile ago…

Boy: (nods and looks down)

me: I just want you to know, you are an awesome kid, you DO have a voice, and you are A great kid and I am proud of you. I don’t want you to ever feel like you are worthless, because you aren’t. Ok? Please always remember that!

boy: (looking at me dumbfounded with tears in his eyes) Thank you!

me: I’m sorry, I probably shouldn’t have said that, but I couldn’t help it! You seem like a great kid, what they did was not cool😦

Older woman behind me in a booth: no it was not, son! Not cool at all, and I feel just like this lady! Don’t believe that garbage! You are a beautiful boy!

boy: (wiping his eyes) thanks so much, I’ll never forget that.

(Interrupted by angry mom banging on window to hurry him up)

boy: smiles bye and leaves

lesson here?

you don’t have to pass it on by spending money. You can make someone’s day by giving them hope, understanding, sympathy, soooooo many things.

just like the saying for dogs that I post on my wall, says… You can’t save every dog (child) in the world… But for that one dog (child) you can change their world.

❤️

Day 2-3

Had a really hard visit last night, found out he has been the victim of bullying, again. Not from just the other kids and roommate but a teacher as well! Watchdog momma got that taken care of, but not before him receiving some bruises and a bloody nose😦
Spoke at length today with the doctor (tucker) and therapist, Kristin. They are amazing, and all over the mistreatment and bullying.
Owen is also being tested for physical causes. Don’t want to elaborate here, due to not knowing what exactly they suspect, but they feel some of this IS more physical rather than mental. If it IS a physical ailment, then Owen will be discharged and sent directly to Cook Children’s. If it is mental, we are in the right place. We have already been referred to a cardiologist and an ear, nose, throat doctor.
I am in a better place, mentally. Just still aching for my boy.
Love you all.
R

Admitted

Day 1-2

He has been there 14 hours now.

I must admit. I have not really cried yet. My eyes have leaked off and on and my stomach stays in knots… But I have not openly cried like I thought I would.

I keep waiting to wake up from this nightmare. But I guess that means it’s real.

Its funny, the panic I felt at leaving him, is the same panic that has kept me waffling back and forth between the thoughts: “does he really need help? Or is it just the Autism”.

But after his confession of having been contemplating suicide… I realize I need to be able to leave him for 7+ days or he could leave me forever.

So, I sit. I read. I color and I star off into space. I don’t have the emotional or mental strength to “visit” or think about much else. So I am holed up in my comfy spot… My head, and waiting it out.