We just call him Ryan

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I love this picture. This is me and my son at Christmas 2010. This Christmas marked the change in his life, in our lives. About a month after this picture we finally found out what was really wrong with him. He has Epilepsy. But at the time we took this picture we didn’t know that yet. We were told my son was genetically defected and diagnosed with every mental disorder. ADHD(attention deficit hyperactivity disorder), ODD (oppositional defiant disorder), GAD (generalized anxiety disorder), PTSD(post traumatic stress disorder), depression, mood disorder and even bipolar disorder. All by the time he was 8 years old. He was on just about every type of psych med with 9 prescriptions. About a month before this Christmas photo was taken I was fed up and finally stood up to the doctors. I educated myself about any and every thing the doctors labeled him with, the medications and the side effects. I obsessed over it. I was fed up with them just throwing on another pill when his side effects got worse. I was fed up of him getting worse instead of better. I was fed up of believing those doctors and giving them all the power to do whatever to my son. If he was bipolar I was ready to accept that but damn it I was fed up with all their damn guesses. 9 prescription pills my son took each day and I was angry at myself for allowing the doctors to let it get to that point. After three attempts at partial hospitalization, we admitted him into the hospital. At eight years old my son was placed into the psychiatric unit in the hospital. He was in the hospital for two weeks and we even celebrated his 9th birthday there.

I look at this picture and realize there was a before and after. Before the diagnoses and after. I think back of all that has happened and there was one night that literally saved us both. 

My son had been released from the hospital and home for the first time in years without any medication. What was scary was we found out he really had Epilepsy but the hospital couldn’t get a pediatric neurologist to see my son. So after my constant badgering and bitching the doctor finally agreed to release him and gave me a list of appointments I needed to make. To get in with a neurologist was a 3 month wait. But I didn’t care, I was so excited to bring him home!! 

He started reading. He just sat in his room reading!! Now that’s just crazy talk…nope it’s true. I remember him telling me before he would look at the pages and it just looked like alphabet soup. But now when he looked at the pages the words came alive because he could read them. I think all those meds really messed with him but they also numbed the pain of our past for him. See three years before this we had moved from our home, the only one my kids knew and started all over leaving the past behind. The past being my son’s father who was abusive in many ways and we finally got away.

Fast forward. Extensive neuro psych testing found the rest of the pieces. No depression. No bipolar. He has Epilepsy, ADHD, non-verbal learning disorder(think high functioning aspergers/autism), and sensory processing disorder. But we just call him Ryan. 

Now Ryan is almost 16. He’s a sophomore in a regular high school with an IEP (individualized education plan). This year will likely be his last year needing the social skills class which will allow him to take an elective class like photography. Next semester he’s signed up for ROTC. He wants to be a police officer and help people. He has a girl friend and loves who he is. He is thoughtful and caring. Funny and still obnoxious. He is a great kid and I am in awe of who he has become. Somehow this amazing kid with a shocking past is beating the odds and this mom couldn’t be prouder.

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Frustrations of being human

 

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My son, I love him dearly, but oh.my.god…can that kid drive me to my limits. My day consisted with kind of a crummy work day, then going to Walmart to pick up groceries for our Thanksgiving dinner. While shopping my son’s teacher called, a 20 minute conversation was had standing by the frozen turkeys. My son just decided he didn’t want to participate today, no work was completed for 6 periods. He wasn’t combative which sadly is good news. I spend my $150 in the self check-out. Come home to him in his “mood”.

Long story short, my son was upset his teacher embarrassed him in front of the whole class. He’s yelling and let me tell you, this kid has some lungs, and it pushes my limits. My daughter decides this is the time to inform him he was being selfish two days ago when he ate the last package of cinnamon rolls. So here I am, trying to discuss school and listening to them argue over fucking cinnamon rolls, both yelling over the other.

Finally my son and I get to discuss his day, his version. Sounds to me his lack of attention and honestly, I feel, his lack of respect has pushed his second period teacher to her limits. I listen respectfully and calmly explain “hey bud, do you think it’s possible when you have to be constantly redirected because of your lack of focus, do you think it’s possible that in a class of twenty something kids and the teacher who has a plan set by the school district how much work she is “REQUIRED” to teach all these kids for 9 periods a day, and that doesn’t allot her extra time to constantly redirect you or pull you aside for a lengthy explanation of how your actions appear disrespectful to her and the whole class…do you think it’s possible in her day she can, I don’t know, become human and get frustrated with you? Lose her patience?” Mind you while I said this, I had to snap my fingers a minimum of three times, and tell him no I will not let you speak yet at least two times. Sigh.. he is exhausting.

The night moved forward. Then Ryan begins to tell me how he was then yelled at after school because he was startled and did his extremely high pitched scream in someones face who then yelled at him to “knock of that god damn girly shit”. Sigh… big sigh… I’m expected to address each and every person who doesn’t have the ability to calmly explain in detail with compassion and honestly, I’m exhausted. Did I do this? Did I cause his thinking the world has to tip toe around his feelings?

Then I’m cleaning my house preparing for a big Thanksgiving feast and my mom visiting, that’s stressful, my mom! I always want things perfect for her, even though I can’t compare to hers, I want her to know I try, that she taught me what’s important. I must have told my son a minimum of twelve times tonight to lower his voice, stop yelling. I use hand gestures to remind him, I give him the look that says “Dude! Enough!”. I am calm and patient at 5 pm… even 6 pm.. but by 7:30 when I’ve had him purposely scream like a girl terrified on a roller coaster in my face, I’ve had enough. I’m now yelling at him, firmly. Even popping him in the mouth with the reminder “I’ve asked you how many times to stop yelling!?”. In the end, I kick him out of the living room which took at least twenty minutes to make him go, and he’s in tears might I add. And I’m sitting here pissed and feeling guilty.

In 3 hours I managed to turn his shitty “I don’t want anyone here for thanksgiving! I hate school and I hate my life and I don’t want to see anyone!” to cheering up and being back to his goofy self and laughing…. to sending him to his room in tears. And I’m sitting here blogging my frustrations to avoid going in my room and popping a xanax. I am afterall, human. Extremely amazing and strong, but still human.

One decision

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One decision..
One choice..

To take you to a completely different direction, open a whole new journey. Like a fork in the road, but there’s no guarantee which one is better for you. So fear is shouting “what if it’s worse than where I’ve been or where I’m at?”, then hope whispers softly “but what if it’s not?”.

Magic of beginnings

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24 hours

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Life lessons bottled up

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A mothers guilt

I have said those words to myself a thousand times, but typing those words out for all the world to see…(deep breath)..it stings a little…

A mothers guilt…this mothers guilt.

I can speak as a mom, and I by no means am trying to say ALL moms feel this way, or are this way, but I hope there are others who understand.

We have to make decisions that will affect our children’s lives. It will affect who they become, and there’s always going to be those stories they tell people about their memories of things, good, bad and in-between. I have stories about my mother. My mom lost her mother at a very young age, so she didn’t get the privilege (I mean that) to complain to her mom about how her own kids (one of which is me 🙂 ) were driving her crazy. Or ask her mom “how did you do it mom!” or to say what I have said a gazillion times to my mom “I’m so sorry for what I put you through”. Mostly I apologize for being a self centered, lazy teenager. And my mom smiles and says “you don’t have to apologize to me”. Yes I do. That’s how I show my mom how differently I see things now as a mother compared to how I saw them as that bratty teenager. And they are not just words to me, I truly mean it from the bottom of my heart. I’m sure my mom doesn’t want my apology because, well, because she’s mom. Mom’s understand their kids will make mistakes, lots of them in fact. Moms hope they can help avoid some obvious mistakes, but I’m learning sometimes us moms must sit back and let the rocks tumble. But when things go wrong and it hurts our kids we moms are always so hard on ourselves, that wonderful “mothers guilt”.

This is going to sound crazy, but I really got lucky with my girls. I was 18 when I got pregnant. I didn’t even know how to take care of myself let alone a baby or two!  Which meant I didn’t eat right, I didn’t sleep enough, or I slept to much, I skipped my prenatal vitamins a lot (they made me nauseous) I stressed myself to tears daily. I was unhappy. I was 18, unmarried, and my boyfriend of 3 years broke up with me after I got pregnant. I had to drop out of college, lost my scholarship. I lost my job because I got put on bed rest. I already felt the mothers guilt. I felt bad for bringing my kids into a single parent home, with no dad in the picture (at the time) and I had no money to take care of them. The depression I felt was actually my mothers guilt I’m sure.

As a kid I dreamed of a fancy future, a high paying career, I was going to be someone important! I always remember picturing myself in a loft downtown with an area for my art with paint brushes and a work in project sitting on an easel. Anyway, being an 18 year old unemployed single pregnant teen was the farthest thing from my dream. My dad was dying of cancer, my mom was in her midlife crisis and my best friend dumped me. I was a depressed wreck. But a miracle happened, well 2. I gave birth to two beautiful and healthy baby girls who brightened my world beyond my imagination. They had a few minor health issues as babies, but overall they were very healthy babies! By 6 months they slept through the night. They weren’t picky eaters, I just had to cut up the meat and hide it in mashed potatoes. They were full of smiles and giggles and they shined everywhere we went. I eventually got back to college. I didn’t think I could love anything or anyone as much I loved those girls! I was lonely sure, but I didn’t really picture myself with anyone. I accepted it was me and them girls forever. So I spoiled them, dressed them alike, gave lots of hugs and kisses, did their hair every day in pig tails, I enjoyed them because as far as I was concerned they would be my only children. Then life threw me a curve ball, well a lot of curve balls and with each of those came more guilt.

I met a guy, looking back I’m honestly mad at my mother for encouraging it. But she was just happy to see me happy again and the idea of me not having to raise my girls alone was nice. What a fool I was. I can’t express how much guilt I have locked away over this one, but it is what it is. Lessons were learned. I became a much stronger person from it all. And in 2002 I gave birth to a bouncing baby boy. It was a very, very, very difficult and long delivery. I was in labor for over 27 hours and actively pushed for nearly seven hours, mind you this after having my twins by c-section. My son was 9 pounds and he couldn’t get out. I have guilt over picking that quack doctor.

From day one Ryan had health issues. He didn’t sleep, he was always hungry but like the girl from the exorcist, he threw everything up. It was awful. Jaundice, fevers, ear infections, acid reflux (I never knew a baby could have that!) eczema, sick all the time he was. The guilt over his birth still eats at me. I was again going through another pregnancy alone but this time also raising twin four year olds. The last thing I wanted was to be raising 3 kids by two different fathers alone, going through a divorce. What a catch I made my myself! At least I had a job this time. (there’s my sarcasm) Do I need to explain where the mothers guilt fits in this part of the story? God I hope not!

Fast forward through a lot of crappy choices that came with more of..you guessed it… mothers guilt.

Let’s see, I have no idea where to start on this part… Hmm.. okay, 2004 was the first time I took Ryan in for outside help. Ryan was always so much more work than my girls were. I’m sure I’m exaggerating but I honestly remember the girls always being so easy. You said “no, don’t touch that” they didn’t touch it. Shocking I know! I mean, they’d give me a poutty face, immediately followed by a big smile and a “shake that booty..uh uh..shake that booty baby” such easy kids. Ryan is a tester, a button pusher, he likes to test the limits and push buttons. He’s honery! Anyways, 2004 fast forward through alot of mis-diagnoses, therapy, behavior modification, medical tests and hospitalizations…and the overwhelming guilt that comes with all that… Ryan actually has Epilepsy, and ADHD. He’s a great kid though. He’s funny, charming, peculiar, artistic, loving, smart, jokester, thoughtful. But he’s had a rough road, course thank god he had me and his sisters because it takes a whole lot of love to get a person through what he was.

And the guilt over all the stuff I fast forwarded through? Well there’s just so much to explain, to sum it up, I learned how to be my child’s advocate. I learned how to navigate my way through the system. The medical, the insurance, the doctors, the school, IEP’s, I became obsessed with it all. Why? My guilt. It’s silly really. Most people don’t know about this stuff, we trust the doctors and the schools to do right by us and our kids. BUT I learned a very important lesson. We must educate ourselves too, moms (and dads if they are involved) are the most important person to stand and fight for our kids.

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