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.

 

What Autism stole from us

Last week Photo day did not go well. He did not like the noise in the crowded room of a bunch of kids, a photographer getting them riled up (trying to get them to smile), and a room full of aides and assistants adding to the chaos (trying to help), and a powerful camera flash in his eyes. He would not sit down for the group picture. Just would not. So I picked him up and called it a day. I wasn't going to torture him so I could get a class picture. And I didn't want to ruin it for the others who were sitting. I was teary eyed. I won't lie. I was disappointed. That moment of group photos was added on the Crap Autism takes Away mental list. As my husband said, it's going to be a long list and we need to toughen up.

I carried him out of school and he kept on saying, "I'm sorry mami, I'm sorry." He was started to get upset. As I hugged him close and reassured him, it really wasn't a big deal anymore. He's made so much progress. He's speaking, he's learning proper pronouns, he's starting to read, he knows so much stuff, it's rather fun discovering my son's intelligence at this age. So Autism may have stolen a lot of moments that other "normal" parents take for granted and part of me will always be hurt by that fact. But I have to learn to appreciate the other stuff too-- well not the difficulty with transitions or 2 step directions-- the sweet stuff, the non autism sweet stuff this little boy is capable of. Possibilities. F the stupid Crap Autism Takes Away list.

P.S.
Later this school year before school is out, I'm going to go in and take a picture during recess of the kids playing around and being kids. That's a picture that I want to keep for his school album. I'll take some pictures with his teachers, his aide, his classrooom. He's used to me taking lots of pictures of them.

Vaccine Exemption in PA for Preschool

Vaccine Exemptions for PA Pre School

Last Thursday, my school returned from school with a legal notice asking for proof of shots and proof of being seen by a doctor for the annual health check.  Hmm, here we go. First, please realize you will get a formal legalise sounding notice asking for health forms signed by a doctor and “proof that your child’s immunizations are up to date in order for your child to continue receiving services at . . .” All very intimidating to the average parent. Except I don’t think I am an average parent anymore. I’m an angry parent who feels I was mislead by our pediatrician because they didn’t warn us about ingredients or side effects.  Second, in PA you can have exemption from immunization for school age children based on medical exemption and religious exemption. Additionally, you have the legal right to object to a health screening should you so choose.

For those of you who live in PA and want to know the vaccine laws in our state here it is, pasted from:

Here’s the code-  http://www.pacode.com/secure/data/028/chapter23/s23.84.html

§ 23.84. Exemption from immunization.

(a) Medical exemption. Children need not be immunized if a physician or the physician’s designee provides a written statement that immunization may be detrimental to the health of the child. When the physician determines that immunization is no longer detrimental to the health of the child, the child shall be immunized according to this subchapter.

(b) Religious exemption. Children need not be immunized if the parent, guardian or emancipated child objects in writing to the immunization on religious grounds or on the basis of a strong moral or ethical conviction similar to a religious belief.

 

Source

The provisions of this § 23.84 amended through September 17, 1982, effective August 1, 1983, 12 Pa.B. 3288; amended August 22, 1997, effective August 23, 1997, 27 Pa.B. 4317. Immediately preceding text appears at serial pages (164332) to (164333) and (129145).

Cross References

This section cited in 22 Pa. Code § 11.20 (relating to nonimmunized children); 22 Pa. Code § 51.13 (relating to immunization); 22 Pa. Code § 405.49 (relating to immunizations); 28 Pa. Code § 23.85 (relating to responsibilities of schools and school administrators); and 28 Pa. Code § 27.77 (relating to immunization requirements for children in child care group settings).

Did you catch that? “Strong moral or ethical conviction similar to a religious belief” remember that if you don’t have a religious or medical exemption. Basically this is a philosophical exemption written into the religious exemption. At least that’s how I and many other PA parents read it.

 Here are some sites I found to be helpful-

http://experimentalvaccines.org/vaccine-exemption-forms/

http://www.nvic.org/Vaccine-Laws/state-vaccine-requirements/pennsylvania.aspx

I really liked this one because it provided an alternative form to provide the pediatrician or daycare. You know they make you sign a liability release and it reads how dangerous it is to not vaccinate etc etc—according to PA statutes- there is no “formal” form- a handwritten statement from the parent stating it is their religious belief should suffice. So don’t let them intimidate you.

http://vaclib.org/exempt/pennsylvania.htm#preschool

Hope this helps those who have chosen not to vaccinate.  I don’t want to argue or debate this. For our family, we have chosen to stop all vaccinations. My son’s last vaccination was at his 2 year well visit, my daughters last vaccination was at their 9 mo well check. I regret ever vaccinating my kids and if I’d been a better parent I would have been more proactive about researching vaccine safety. But I can’t change the past. I can only move forward. Do your research and make the best informed decision for your family and respect that others will choose to believe differently than you. We are all parents trying to do the best for our kids.

Romance novels

Romance novels are probably 80% of what I read. Earlier today I was sitting at the Y waiting for JD’s gymnastics class to finish, reading a historical novel that takes place in the 1800s about an interracial couple and their children growing up right after most Native Americans were sent to reservations. It was a wild west historical, very nicely written in case you're interested, called Reckless Love by Madeline Baker. There is a point to this, I'm getting to it. Bear with me.

So there I am sitting, periodically looking towards the door hoping it’s going well and cringing at the thought that this might be another activity that does not go well. This isn’t a special needs class, their teacher assured me they’ve had many spectrum kids in their class before and they should be fine. Frankly, I’m not reassured and am worried but we decided to give it a try. Maybe I’m brave, stubborn, or crazy. If you’ve read my blog for a bit you know that we have struggled with getting JD to enjoy and cooperate in a sports group activity & I’d given up on it for the summer and spring. I have no idea why I’m trying again. Perseverance or insanity.

While reading, I think about the challenges my kids may face. My kids are biracial, I’m Guatemalan and my husband is Caucasian. We've come a long way since the civil rights movement. I don't worry too much about racism. I'm not saying racism doesn't exist, I fear that may never end. I'm saying that I hope to raise them strong enough that their self esteem isn't affected by it. Whatever challenges and disabilities they may face in their lives, I don’t want them to care about others opinions, I don’t want them to feel belittled and I never want them to feel ashamed of themselves.

Then I thought, what if they read my blog! Crap! I’m always venting out my fears and frustrations. I mean, that’s why I started the blog! So I started planning this post because I want the kids to know that I am so happy to be their mom. I want them to know and see in writing, that I am not ashamed of them, I’m proud of what they’ve surpassed and of who they are becoming. I am sure as they grow there will be moments of parental pride and moments when they will make me want to bang my head because of their teenage pranks. I don’t ever want them to think that all of my venting and frustrations in any way indicate that I am ashamed of who they are or were as children. Sure we have challenges; it’s not easy to be raising 3 so close in age on 1 income. Our schedule is insane between therapies and doctors appointments. Yes my life is so very different from the pre-kids days, they are my 1^st priority. This is how it should be.

I spent so many years not sure if I wanted kids, knowing I wanted to establish a career before having them, then I spent married life wanting kids and hoping it would happen on its own. I remember the emotions I felt as the nurse confirmed my pregnancy over the telephone, the first ultrasound, all of those pregnancy moments. I didn’t have easy pregnancies—both times I had high blood pressure and pre-eclampsia. With the twins I also had gestational diabetes. Both times I was induced about a month early as a result. But I loved being pregnant, it was emotional and just lovely.

So kids, years from now if you’re somehow reading my blog, I am not ashamed of you. Truly, God blessed me when he made me a mother. But parenthood does not come without its challenges and this page is my way to vent my emotions because frankly I’m tired of talking about autism and delays with friends and family. I’d rather just write about it.