Positive Parenting #fail

I’ve had a rough couple of weeks. I have been feeling – a plethora of emotions. I need a break! I might be hitting a new low. It is my turn to cry and my husband’s turn to reassure me. We like to take turns because if we’re both at a low ebb—we’re in trouble. I wonder if I need to go on some medication or if this is seasonal depression.  I am overwhelmed.

JD’s behavior remains inconsistent. I struggle with differentiating sensory reactions from misbehaviors and so I am inconsistent with correcting the misconduct. I know what to do with most of the sensory reactions and I have a lot of guidance from his support staff and therapists. I struggle with how to correct his misconduct.  Am I expecting too much from a four year old? I am scared of turning into the mom that makes too many allowances for her child because of the child’s disability and end up with a spoiled child who thinks he can get his way.

Sometimes I hate the parent I am turning out to be. I hate when I yell, I hate when I lose my cool. Why can’t I have more patience? This is not who I thought I would be. How do I change it? I wish I could devote more time to all of them fairly. I run around turning off fires, reacting to outbursts instead of being a more involved parent. Do I expect too much of myself? How do I CLONE myself?

I bought some positive parenting books for suggestions. I have tried them and the results are inconsistent. They look like meltdowns but they’re really tantrums. Trust me, they are. You would have to know my kid to know he’s smart, he’s wily, and he knows what buttons to push. How do I know? There is a specific cause for the reaction and it is not sensory. Or maybe it becomes sensory. Who knows?! I feel like screaming and I feel like I am failing my kids.

new leukemia treatment

I read about a new treatment against leukemia yesterday. It uses altered HIV cells and has shown some success. Here's the link. I immediately thought of my dear friend Erik, whom I lost to leukemia when I was in college. To say Erik had been my best friend would be too simple, I miss him. I will always miss him. He had a great smile and wicked sense of humor. I hope this new treatment is able to save so many suffering from cancer. I can't help but think, why couldn't they have had this treatment when he was still fighting against cancer? Would it have helped?

I admired his courage when into his 3rd bout of chemo he decided to stop all treatments and go home to prepare to die. I'm thankful we had that time. That last night we were laughing and joking. I knew he was in pain and I felt so useless and hopeless. We were laughing about something and I was holding him when he passed. So many years later and I can still cry over that moment. After the funeral I went right over to my husband's house (we were dating at the time) and just cried. Some friendships, some losses you never get over. For me, losing Erik is like that-- a wound that's scabbed over but it's still a wound and very much a loss keenly felt even after all this time.

Cancer research and treatments have come a long way since my grandmom died of breast cancer in the late 1970s. It has come a long way since the late 1990s when I lost Erik. It is encouraging to see R&D discover new options for those fighting cancer. I hope those going through cancer treatments fight it and I hope this new treatment gives kids with leukemia a chance to beat it, even when it comes back a third time in their late teens-early adulthood as it did with my friend. I pray those friends going through treatments, especially Meg and Jess, know we pray for them every night and continue to hope that their story is a success story.  That's all.

Everything is gonna be alright. . .

According to Google there are either 5, 7, 10, 15 steps to Grieving. Of course then I did a search for Grief and Autism and stumbled on a new blogger. The Spectrum Mom has an interesting post- http://ssjatreptow.wordpress.com/2011/06/15/stages-of-grief-after-autism-diagnosis/

When you google Autism, you find so many blogs, parents just like me writing their pain and frustrations. Denial, Isolation, Anger, Bargaining, Grief, Acceptance-- all the stages of grief.
Why am I going through these stages?  Apple is not on the spectrum but she does have motor planning issues which are causing speech and motor delays. We're going back to Neuro in February for some guidance. In the meantime, according to Bob Marley & my husband, Everything is Gonna be alright! And right now I need encouragement because I can feel myself sinking into a pity party moment. Why can't my kids have it just a bit easier? So here are the stages I'm going through:

Do I still grieve? I will always grieve. On a daily basis, at least once, I think how much I hate Autism, how much I hatethat my son has to overccome so many difficulties. I would take it all away in a second. I would. As well as JD is doing, as well as things are going with his many therapies and everything ASD, I would cure it if I could. I wish things were easier for my son. What parent wouldn't want to take away a hardship from their kids?   For me, I will forever grieve the hardships he's encountered and those yet to come. I will always grieve for how difficult things come for my baby girl too. She may not have Autism, but she does have delays and we may not have a specific reason for the delays, but she's still not a typical developing baby girl. And of course I will grieve for that. I hate that two of my children will have extra challenges and who knows how many crying moments because of their medical conditions.

Isolated? Not so much. We've made some ASD friends. I've made some very good ASD friends and JD has made some very good special needs friends at his school. I joined a mom club. So I don't feel we're as isolated. Although sometimes our schedules are so crazy that it feels like we're isolated. During a bad day it can feel like the loneliest planet. Particularly so, if you don't have a strong support system.

Bargaining? Yeah, still do that nightly. Something like, God heal my son, help him make progress, help me help him, cure him, God please make everything ok with Apple and make my Achalasia worse. They're just babies, please please help them.  Although, I don't bargain so much anymore because its rather pointless and selfish. We pray for our friends and his friends at night. I have to say my son is a good prayer. I love that he's building a relationship with God. We're not regular church goers but I hope to be once he's older.

Acceptance--that's a toughie for me and the meat of this post. This is where so many of us Autism parents defer on. Yes I accept he has autism. I live it each day, I don't need another diagnosis to accept reality. Our reality is that my son has Autism. He will always have it. There is no magical cure, there is no losing the diagnosis. So yes, I accept that. Do I like it? Will I ever love it? No, my acceptance doesn't stretch that far. Thus the grief. Thus the fear!  I will never be one of those parents who say we need to be positive and love and embrace Autism. I'm sorry if you find that offensive, but I just am unable to accept and buy that load of crap. Loving my child does not mean I have to accept that level of thought. I feel I can accept and love my son without saying that I love Autism.  (Gasp, nope, you'll never ever hear me say that!) My daughters delays?  Yeah she has them, we have so many therapies because of them. I'm not in denial. But I hate the delays and they scare me. I wouldn't ever say I love my having Achalasia- I hate it. So why should I say I love my kids challenges? But I can't change it. It just is and that's my version of acceptance with their challenges.

I've had Bob Marley singing in my head for days now. So I'll leave you with a pretty good song. All I need is that beach spot in Aruba & a nice cold drink.

The Bat S. Crazy Aunt

11/26/2012

I am grieving the loss of my best friend. Usually when you get on my shit list it’s a life sentence. I may forgive because it’s healthier for me, but hell will freeze over before I forget the lesson learned- ask the fam. With my friend who was not just my best friend but as close to another sister, I figured I should keep trying.  Then I remembered my crazy aunt and a Christmas memory. I realized I didn’t want to do that to my best friend’s kids.

I divorced my aunt on my 8^th grade graduation. My aunt is either bipolar, or has a narcistic personality disorder, or is possessed. Sorry not funny right? My memories of her are like bipolar vignettes; from her strong laugh to standing in my living room with trash bags full of clothes having left her drunk husband in the middle of the night—again. She was always such a complete and utter bitch towards my mom and sister. Sorry if it offends but trust me, no other word here.

Here’s an example of her craziness: I have a photograph of my cousins & I, bundled up against the cold, playing in the snowy school yard during an early dismissal, waiting for her to pick up my cousins.  Crazy aunt was pissed that my sister & I had waited with my cousins so they wouldn’t be by themselves in the school yard. Weird and mean right? Told you—wacked up crazy when she’s having a manic spell. I vividly remember how angry I was when I saw how upset my sister was. She was barely 18 and my aunt had upset her so bad that her hands were shaking.

The final straw for me, the time that I said to hell with them all is at my 8^th grade graduation when I was so proud to be valedictorian; does the crazy aunt not go bat shit crazy and go off on me as she walks into the auditorium? As my friend Louie held my hand I closed my heart to them. Basically a 13 year old boy has more empathy than my bat shit crazy aunt.

That Christmas memory I was talking about? It was over Christmas presents. Whenever crazy woman was mad, the girls couldn’t talk to me, nor accept gifts apparently. My mom shows up with presents at the crazy woman’s door and gets the door slammed in her face. This enrages my dad and well you get the picture here. Dad took longer to distance himself away from her (his sister after all) but we’re all distant from them now. Can only put up with crazy for so long.

I am distancing myself from my former BFF because of what my aunt taught me. I miss her kids like crazy. I’ve loved those kids since they were born.  As I was going through Christmas gifts, I realized I did not want to put her kids in an awkward position of having to choose whether or not to take my presents, or whether to talk to me. For now, maybe space is for the best.

My happy place, where I go to when I'm trying to ignore the bad stuff. Aruba 2007.