A slap in the face....

    I don't like being slapped in the face. Physically or metaphorically. Yet, this is life and let's face it, it happens to ALL of us. Today my slap in the face was delivered through the phone.

    If you follow me, you know how I am about the phone. I don't answer. I don't call out on it. When it rings I become anxious. Why you ask? Because the older I get the MORE socially awkward I become. I get so anxious when I'm on the phone. I don't know when I should speak. I'm afraid of cutting someone off. I run out of things to talk about. Or the most annoying, my fibro fog takes over my brain and I forget what I was saying altogether! I digress.

    The phone rang today. I let it go to the machine (yes, we still have a machine. I refuse to pay for voicemail that I also hate to check) and heard it was Liam's cyber school psychologist. I was expecting this phone call, so that really helped. I answered and we began chatting.

   Side Note: I have been home schooling Liam since kindy. (Those that have followed our journey know that he only attended 4 days of kindy at which time we had to pull him due to a total autistic regression. He was officially diagnosed right after that.)

    She was returning my phone call because we have been playing email tag for a month or more. Liam has been reversing letters and numbers from the time he was a toddler and learning to write. They told me it was nothing to worry about. It would correct with age and was normal. However, our life isn't "normal," so of course, it has only gotten worse. Not only does he invert his numbers, write them backwards, and write his letters backwards, but when he writes, he starts at the BOTTOM and works UP. I correct him. He gets upset. "This is how I have to do it mommy!" Thus the reason for contacting the school.

   Moving on, the metaphorical slap is coming. So the psych and I talked about the pics I have sent her of his writing. She said there was no real "test" for dysgraphia and dyscalculia, only dyslexia. Then she went on to say, that judging by his reading comprehension scores, and by the writing samples, they believe him to have a reading/writing learning disability.

                                       There's that slap!

    I don't care who you are. If you tell me that hearing those words spoken about your child ISN'T, a slap in the face, then you're full of shit! I KNOW he has problems. I am with him 24/7. But HEARING it from another person, or SEEING it on an IEP is a whole other story.

     This child excels in math. To the point that it amazes me. His vocabulary and verbal context is amazing. (as long as it's a good day. on bad days, not so much)  He can also read great. Just don't expect him to be able to tell you WHAT he read. He can't. He just can't.

    So even though I knew this. Even though I expected to hear something along these lines, it still hurt. It seems like every damn time we turn around, someone is adding another label to him. I sit and wonder, how much one little boy can over come. How much until he breaks? How long until I can't teach him any more? What if I HAVE To send him back to brick and mortar school?

   Anyway,  he is now being re-evaluated by an OT and will be receiving services from a NEW OT. The one he has been working with assures me, "his writing looks fine to me." Yeah, okay lady. It looks great. Check it out!

NOTE: I'm NOT posting this to humiliate or demean my son. I am posting this because she is an Occupational Therapist and yet she sees NOTHING wrong with his writing. This is just a taste of it. Some are so much worse, but for his sake, I will not post them.

















   Oh and they are going to get him a talk to text program for the computer. Also, they are adding hours of OT for him too. This is great. Not as far as money goes because we all know that gas prices are ridiculous. We live in a rural community and travel 30 minutes one way to receive services. But he needs these services and like always, we will find a way. Our job is to make sure he gets what he needs to help him be a successful adult. And we will never give up that fight. Hurtful labels or not. <3

The Look

     Have you ever been out in public, talking to someone about your child's autism, and they give you the look. Or you run into a high school chum and when they ask you what you've been up to, and you tell them, "the autism life," and they give you that look?

     You know what look I mean. The "wow, I'm so sorry," look. Now, don't get me wrong, I'm not trying to condemn someone for having a heart. But that look! It makes my stomach flip, my heart skip a beat and for a split second, makes me angry.

             Hey, I'm only human.
 They are my feels and they are real.

I'm not trying to knock someone for being empathetic. I mean, yes, I would much rather you have empathy for our family, than for you be afraid of us, or hate us. But, it still hurts. It's still a blow.

    So I was thinking. Do me a favor. Do other autism or special needs parents a favor. Look at us with admiration. Look at my child and think, "Damn! That kid is kicking autism's ass today!" Or even, "Wow! That kid is defying Bipolar Disorder! Look at him! He's so happy. Working so hard at making the most of life!" Or hell, even tell him that.

 


 Admiration ROCKS!!!! It might just give us or our kiddos the extra nudge we might need that day. Caffeine, sugar, adrenaline, that only works so long. Sometimes we need moral support. Sadly, not every special needs parent gets that support. BE THAT SUPPORT!

 




 I guess what I'm saying is empathy is good, but keep it in check. Don't feel sorry for us. Some days are hard. Shit, some days I just want to crawl back into bed and cry. Some days I don't even want to get out of bed. Then I see that face. That little face that depends on me. That little face that looks to me, to help him face life. That little face that stole my heart, and taught me what true, unconditional love, really was. In the end, we're really not that much different from you.  Our struggles are different, but our needs are much the same.

Hurting the very people you claim to advocate for is EVIL!

We're getting ready to head out on a MUCH needed vacation. We haven't had a real one in years and are so thankful we get this chance.

Those who follow us know what a ride the last few years have been. It's going to be great to relax and just enjoy each other and the ocean for a week!

But, I have a story to tell. Writing soothes my soul, and I need to get this out of my heart before I can move forward and enjoy myself and my family.

So here goes....

This happened yesterday. Someone I called friend. Someone I loved. Someone that claimed I was her friend. Someone that claimed to love me. Well she showed her true colors, and she proved I was never her friend.

I was starting to notice that this person was only having contact with me when she wanted info. I'm a straight up honest person, and she knows that. My aspie brain wants FACTS, not half truths. Not a run around! She would message me and in a sneaky way, be pumping me for info. THEN, she would act like she truly cared about my family and I,  after a  few questions, and once she got what she wanted, she wouldn't speak to me again.

Well yesterday I was awoken by yet another pm from her. Prying for more info. I was starting to get wise to her ways, as have other mothers she has done this too. She of course was wanting info. Then, when she realized I wasn't giving up anything, she was being more vague, telling me to forget it.

Look, if you come to me and say, "so and so said this about you." Or,  "so and so said you said this about me," you damn well better be able to tell me what I supposedly said. First of all, I don't make a habit of talking about others behind their back. If I say something about you to someone else, it's something I will say to your face!

When I finally had enough and caught her in a lie, and asked her to clarify, she UNFRIENDED and BLOCKED me!!!!!

That right there says guilt! I was crushed!

I sent screen shots to my friends. And what they said floored me. It was what I have been thinking for months, but didn't want to admit.

She was using my straight forward, aspie, literal way of thinking against me. Taking advantage of my honesty for her OWN AGENDA!!!!

That's right, I'm on the spectrum. She knows it! And she was using it for her own benefit!

Who does that? She's an autism parent!!!!! How would she feel is someone did that to her child????

I was broken yesterday. I even cried. Now today, I am livid!

She calls herself an advocate and instead she used someone that she claims to advocate for.....

And to back up all that happened, enjoy the screen shots. I'm in blue, she is in white.

So do me a favor. Have friends because you like them. because you relate to them. Because you were school friends. DON'T have friends for your own agenda. Also, ppl that you are friends with may be on the spectrum. Honor that. Support them. Don't use them.

I know you guys won't  But I feel it needs said.

To medicate or NOT to medicate

WE ARE USING MEDICATIONS~

Yes, you read that right. the mother who was vehemently against medicating children, has put her child on meds.

I was always against medicating my son. He was diagnosed with ADHD before he was diagnosed with Autism, and I told the pediatrician from the get go, NO MEDS.

As the years have gone by and as I have watched my child struggle, pita and I started to actually entertain the idea....

I still wasn't sure. That's a BIG step. But when Liam had his last manic episode, and our choice was inpatient over 2 hours away or home with an appt with the child psychiatrist, the realization was that medicine was going to need to be administered.

It was with heavy hearts that we accepted a script for Concerta, and one for Hydroxyzine for Liam. We were told that these are the first step. If they don't work it will be Zoloft, and then maybe even anti psychotics. So we started with the lesser of evils.

I was nauseous when I gave him his meds that first day. I watched him like a hawk. I mean seriously, Liam kept asking me to stop staring at him!

                               That day I saw a miracle.

  My son was concentrating. He was staying on task. He was playing something for more than 10 minutes at a time. He wasn't angry. He wasn't having constant meltdowns. He wasn't stimming constantly. We weren't walking on egg shells. (note: I don't mind that he stims, but sometimes he gets carried away (head banging) and I do fear it will hurt him)

We went from three meltdowns a day to maybe 3 a WEEK! Instead of bursts of anger, he cries. (I don't like to see him crying, but it beats keeping him from banging his head off the walls when he is upset)

I was afraid to actually come forth and admit that I too, was giving my son medication. So many people look down on those that medicate their children. I myself hated to hear that children were being put on Ritalin or Adderall. I didn't condemn anyone for it, but I hated to hear it. In my mind it was like people were giving their children legal cocaine. How could that be healthy?

And then my son went down hill. so fast in fact, that we really had no other choice. It was then that I realized that these medications are made to HELP our children. His doctor wasn't just throwing a script at us and rushing us out of his office. He was reaching out and telling us what he thought would help our son lead a happy, healthy life.

We just went today for a medication check up and when we told Dr. S all the good that has come from these two medications, he was smiling from ear to ear. He said that sadly, he doesn't always hear that it helps a child like this. He was genuinely happy that Liam is doing so well. We are happy. Liam is happy.

While I still believe wholeheartedly that medication should ALWAYS be last resort, I am now embracing it.

Not for me. Not for my life, but for him and for his life. He is happy. He is healthy. He is thriving.

My job as his mother is to make sure of that.

(I am NOT a doctor. I am NOT saying medication is the right step for ANYONE or ANY CHILD. I am saying that it should be last resort, but as parents, we shouldn't feel guilty for helping our children have better lives)

Psychic Chemotherapy

So I am reading an old but beloved book. I adore it. I read it almost every year because I enjoy it so much. I have read it at least 10 times, and this particular quote never stood out to me...... Until now.

When I came upon this quote (Odd Thomas by Dean Koontz page 134) I stopped. Not my normal stop. (by that I mean, when I'm stressed or over tired, my OCD tells me I must read certain sentences 4 times. It sucks, and sometimes takes me forever to get through a book.) I digress. I stopped. This time I reread the sentence because it was resonating in my heart, NOT because my brain was being a jerk and messing with me.

Then it hit me. When Liam has his manic/depressive episodes, I don't write. I have to force myself to get on facebook. For a few reasons I guess. 

One of which is, I shut myself off from the world. We exist in our own tumultuous vortex and leaving it at times like that is like, trying to free yourself from the grips of an F5 tornado.

Another reason is, though I love reading how my friends and family are doing, and I love seeing the fun times you're enjoying; when we are in that vortex, I don't want to see your happiness and sunshine. It makes our Hell seem much more harsh and cruel.

Not until the last time did I actually go on ALFL and ask for prayers. And something much more profound happened. YOU all reached out to ME, and you made the hurt, hurt a little less. Still, I couldn't bring myself to write about what was happening. I couldn't blog about it. I couldn't really even go into detail in a status update....

Up until I read that passage from Odd Thomas, I thought I was avoiding my blog because I didn't want to have to relive those tragic days. It was then that I realized, I was wrong. YES Pita, I said I was wrong.

And where I was wrong, Little Ozzie (well actually Dean Koontz since LO is fictional) was right. I know this because, when I was finally able to blog about Liam's manic/depressive episode, when I finally let it all out, it was like a weight was lifted from my shoulders.

I was no longer carrying that sad journey in my own heart. I opened up, and I shared it with the world. And it was enlightening!

NEVER again will I avoid my blog in a time of need. My blog is here to cleanse my body and mind from  "psychological tumors." All the cruel happenings of this world. From all the wrongs. All the not fairs, and all the what ifs.

My best advice as a special needs mother?

Find an outlet. For you. For your child. Blog, write poetry, paint, sketch, compose music. It doesn't matter how you do it, what matters is that YOU DO IT.

You release the negative and your heart will feel so light!

Thanks Dean Koontz for putting my epiphany into such meaningful words!

<3 <3 <3 <3

Stifle

Those that follow us on Facebook know that a few months ago Liam was almost hospitalized. Thankfully he wasn't, but it was close.

Afterwards we got him in to see a child psychiatrist whom diagnosed him as Bipolar, ODD, OCD tendencies and Anxiety. All of this on top of Autism, ADHD, and SPD.

This was a very hard time for him, and for us as his parents. I still haven't let myself fully absorb the feelings associated with his depressive episode. I can't. I just can't.

Last night Liam was sitting on my lap, rare for him now that he is getting older. I was thinking about other families I know, who have recently had to hospitalize their autistic children. The flood of memories from Liam's episode became so grandiose I couldn't contain them.

These words were flowing through my mind, so I quickly typed them into my phone so I could remember them today.

Stifle

I stifle the feelings,
The memories, the thoughts.
I think of his courage.
How hard he had fought.

I couldn't give in.
I couldn't shed tears.
He needed my strength
To conquer his fears.

Feeling so helpless, useless, alone.
I shut down my mind.
My heart like a stone.

Still I stifle.
I push away the pain.
I bury the memories;
The heartbreak, the disdain.

I'm afraid to give in.
Afraid to feel.
I fear recurrence.
I fear he won't heal.

Just one little boy.
How much can he take?
How much can he bear?
How long til he breaks?

I stifle my breath.
I mutter a prayer.
I stifle the pain,
Layer by layer.

~Courtney B

My childhood therapist was right. It feels good to get that out. Even if it is in the form of poetry. The release is enlightening.
                                                              <3 <3 <3 <3
 

The Autism Life

Sometimes the Autism life is harder on me, than it is him.

When we got home from grocery shopping Liam couldn't wait to get back outside and "find friends." So much so, that he dumped the litter pan, and forgot to bring it in, because he saw "friends" walking by.

He came flying in, vibrating with excitement he yelled, "Momma, J and his cousin J are walking around. Can I go with them?" (they are 11 and 16, so I feel safe when Liam is with them.) I told him yes, and he beamed. He flew into his classroom/toy room, grabbed an old Halloween mask, slapped it on his face, kissed my cheek (twice as always) and flew out the front door.

I smiled to myself. Today seemed to be a good day. Though he was stimmy, talking a mile a minute, and ready to cry at the drop of a hat, the kids were accepting him. That makes it a great day.

Not 5 minutes later, Liam comes back in. Mask in hand, he yells, "Is A here?"  I reply, "No. Why?" He said, "Because J told me A was here for me, and I should come play with him. So I came home!"

I stopped putting away the canned goods and walked into the living room. I could feel my face turning red. My ears were on fire. Apparently J and J didn't want Liam and his silly mask walking with them, so they told him A was here looking for him. To get rid of him.

I said, "Liam, you saw A up the road helping the neighbors, so you knew he wasn't here. Did they not want to walk with you?"

My heart is racing, my anger is rising....

Liam, nonchalantly says, "well, maybe," and goes back to looking at his Magic cards.

I paused for a few moments. I was choking back my tears. Why can't kids accept that he is different? Why can't they accept that different is OKAY.

My voice wavering I say to Liam, "well, when J comes over later to play Magic cards with you, tell him to go play with someone else." (I am tired of my son being jilted, and only good enough when these kids are bored.)

Liam looks at me puzzled and says, "No, Momma!"

I reply, "well, then, what will you say?"

Liam says with a big grin, "I will say, LET'S PLAY J!"

The innocence crushes my heart. I choke on my anger.

You see, I am the one bothered by Liam being turned away. It didn't bother him. He didn't care. He is just happy when a kid seeks him out. That is how kind, and how gentle his heart is.

I AM BLIGHTING MY CHILD!!!!

I am trying to harden his heart to this cruel world, and it's not right.

In an effort to keep him from being hurt, I am intervening with what is right for me, NOT for him. He ISN'T a "typical" kid, and sometimes I lose sight of that.

We all make mistakes. None of us are perfect. We all only want what is best for our kiddos. Sometimes we don't always know what that is. Sometimes, we are wrong.

 <3 <3 <3 <3