Crazy Jugs of Broken Childhoods, Broken Motherhoods

I can't organize my thoughts to get a post prepared. I have attempted a few times and just come up with scattered, random sentences that end up in the draft file.

It seems like I have not gotten my life back together since my mother passed away over 18 months ago. I wonder if I will ever be happy again. Will I ever be able to manage my life the way I want? It isn't like my life was easy or happy when my mother was alive. My mother and I didn't even have a good relationship.

Sometimes when I get flustered and frustrated at Sienna, I am reminded of my own mother and how similar their behaviors are. And no matter how I want to ignore this truth, I am just like Sienna and my own mother too. When I feel so disconnected towards Sienna, I can also understand how my own mother felt. She used to try to hug me and I would cringe. I despised her kisses too. She used to say that loving me was like loving a porcupine with needles. Now, when I try to cuddle Sienna, she pulls away. When I try to kiss her on the cheek, she wipes it off harshly as if she's angry with me. There is a significant difference between my mother and me though. I seek to understand my daughter's troubles. I keep trying to be knowledgeable, strong seeking support when needed. At least, that is where I am now. Who knows how much longer I can keep my character strong.

I confess that I am saddened by my daughter's inequities to love me, just as I am saddened by my own mother's inability to love me the way a child needed loved years ago. We all go through our own lives just to cope and survive and both my mother was and my daughter is just trying to get through it as best possible. I somehow feel like I am above the standard of just reacting innately to my circumstances. I strive for more than just survival. I strive for strength. Sometimes however, I fail. I weep. I wail. I am as sad as a small child.

I also forgive. I can understand how Sienna is troubled with her sensory disorder and moods just as I was as a young little girl. How I still am. And, as a mother, I can see how empty my love tank is and I am tempted to walk away, withdraw, regress just as my own mother did throughout her prime years of her own motherhood.

My husband interrupts my daze towards the long empty hall way where my daughter just walked through, down troddened and angered, disappointed once again. He asks me. "What are you thinking about?"

I respond, "I am wondering if I was unlovable. Was I so difficult that my mom and dad just couldn't love me when I was a child? Did they divorce when I was two because the stress I put on both of them? Am I still unlovable?"

Weeping on, striving for survival. Trying to stay above the standard of failure. Taking life one day at a time, one tantrum at a time. God, please help me to keep the standard high and love me just where I am.

And the Crazy Jugs reflect the disappointment. They want to be more than they are. They want to be treasures, yet, there they stand, dusty and yellowed with plastic beads broken. How did they survive through all the years of turmoil? How did they not get lost, broken fully? They survived. They continue to reflect the memories and tell the story.

Two Bags and Now I'm Nurse Hag!

This week has been charred with a few out of body experiences. Can you relate with those stressful times in your life when the room fades into surreal and all you can hear is your heart pounding. It is like you can only understand because you are watching the scene from the outside - kind of like you are sitting in your own living room watching the stressful moment of your own life unfold on a TV screen. You can barely concentrate on what others are saying to you because you are just trying to absorb the tears that are swelling up in your eyes. You know that if the tear falls onto your cheek, it will give you permission to let the floodgates pour.

That is what it was like for me as my very own drama aired two times and both incidents happened to be from a doctor's office.

The first scene I watched was of my darling husband, Fred. He was sitting in a pre-op room with his blue bonnet, booties and hospital gown. His eyes looked at me like a scared little boy as the IV cord dangled from his strong forearm. I tried to listen and not fall apart as the nurse had him sign all sorts of paperwork basically starting with, "In case something should happen..."

I couldn't imagine something happening to my husband. From the 15 years we have been together, he has practically never even been sick! I on the other hand, get sick each month with PMS and also am plagued with migraines periodically, not to mention my inability to manage stress appropriately so I physically can feel every bump in the road on my life's journey. Oh, and I occasionally am a hypercondriac too! Most of the time when I am starting to feel a little edgy, my husband is helpful. He takes care of the kids and gives me my space. He also encourages me to take the time for self care so that I don't get too uptight emotionally and physically. Yes, my husband is a pretty great blue ribbon guy. There are times when I feel guilty leaving him with the kids to get bathed and ready for bed while I go out for a jog or a walk with a friend. But then he gives me unlimited stack of "Get Out of Guilt-Free Cards" and let's me go on my own way. He understands how I tick and I am so grateful for him.

To sit in the visitor seat and watch my strong husband have to be the patient was so difficult for me. I wanted to be strong, stable and spoil him into recovery as soon as his urological surgery was finished. And, within a couple of hours, he was ready for me to pull the car around as the nurse helped him walk to the passenger seat. He was holding two bags, one with his extra clothes that I sent along with him and another bag for his catheter that he would become very close with for the next few days.

Although he was on some 'mechanical-strength' pain killer, he was extra sensitive to every bump on the very long drive home. About two hours and 2,000 bumps later we arrived home, he went straight up to bed. He slept for about four days. I would prepare his meals and take them on a silver tray up to him in bed. I would also make sure I was there with him as he'd stumble to the bathroom to empty his bag filled with yellow liquid. Along with playing nurse, I knew that one of his "love languages" was the act of doing things for him. And, I knew that he appreciated a tidy house so I tried my hardest to keep the house in order.

The more I tried to stay on top of the cleaning, the cooking the serving, the more impatient I grew. I admittedly was enjoying caring for him and the house and family but I was so used to Fred taking care of a lot of the chores like the garbage and sharing with the laundry and dishes and cooking. To not have him around was like having one of my arms cut off. As hard as I tried to keep it all together, my nerves were frazzled like Bob Marley's dreadlocks in an electric socket. I couldn't control my temper!

So, how do other wives handle this stress? I was out of control. All I could do is yell and scream at everyone around me. I am so ashamed on how I lashed out on everyone. I had no time for reprieve. I was lacking in sleep and self care and my darling husband and two sweet daughters who are also high maintenance got the best of me by 7:00 a.m. and after that, they all got the worst of me each day for four days.

Who did I become? Where was the person I wanted to be? I didn't sign up for this trashy unraveled tantrum tizzy I had turned into. I was starting to think I was more like my bipolar mother. The more I would try to control and manage my stress, the more stressed out I would get and lash out. I also realized that my daughter Sienna, who is also diagnosed with bipolar along with ADHD and PDD-NOS struggles with similar inter-personal conflict herself. It is times like these when I can better understand her. I always tell her, "You have choices to make Sienna. You can choose to throw those fits and deal with the consequences, or you can walk away, count to ten, do something that will help you relax... BLAH BLAH BLAH."

If someone were to confront ME during these past four days and lecture me like that. I would have told them to go away and COUNT MY FRICKIN ACE! (my frickin ace is a fancy word for my gosh darn behind!) And I would have probably growled at them or thrown something at them. Who knows? No one would have dared lectured me this past week. I was like a shark who just sensed blood and was ready to attack, like Bruce the Great White shark in Finding Nemo. He really wanted to overcome his addiction to eating fish but he just couldn't help being who he was. Interesting discovery... hmmm.... (I just realized this discovery through my blog writing. This helps me to accept my daughter more and more! I struggle with this sometimes. I want to change her make her conform too much of the time.)

Today is Monday. My husband is finally on his feet and back to work. He still has the catheter in but I think I am feeling a little more myself and less Nurse Cratchett.

Throughout all of this chaos, my toddler daughter has been getting over a flu with lots of green river snot to wipe and dirty diarrhea diapers to change. Good times.

The other out of body experience that I discovered as the drama unfolded in the doctor's office was about my six year old daughter. I will share in tomorrow's post...

Tantrum: Typical or Not?

Most of the time I have no idea why my daughters start a tantrum. It is usually only in hind sight, I can hypothesize what led up to the tantrum although, I never know accurately why or what instigated the revolting reactions known as The Tantrum.

Before I go on, let me clear up what I am talking about when I say tantrum. Because, a lot of kids have tantrums. They usually throw them when they didn't get their way or maybe when they didn't have enough sleep or are hungry. And, to a stranger, that is what our daughters' tantrums might seem like at the moment. But please, let me elaborate.

Let's take Sienna's tantrum from this evening as an example. Sienna came home from first grade, just as peppy as could be. We got out our Halloween decorations and started placing the pumpkins and scarecrows throughout the house. She was bright-eyed and spunky and at about 4:00 or so, she asked if she could watch some TV. I said no problem and off she went to watch some Hannah Montana.

It was time for dinner around 5:00. We typically eat at the dining hall where Fred teaches school. Fred quietly and gently announced to Sienna that we would be leaving for dinner in a few minutes and then, What? What just happened?

Sienna starts screaming. She normally loves to go to the dining hall for dinner but for some reason, tonight, she started screaming, "NO! NO! NO! I don't WANNA go to the dining hall. I don't WANNA go to the dining hall. NO! NO! NO!" Fred walks away and finds me. We both are shelter for one another when this sort of thing happens. I asked him with sarcasm, "What did you do to her?" He replies, "I just told her we were going to dinner." I could hear her wailing upstairs, screaming the same phrase over and over. I think that she could be in a heavy metal band with those lyrics. Do they even still have heavy metal bands? I digress...

So, I walk upstairs. I think I can help. WRONG! Nothing I say works. In fact, she tries to kick at me and misses my face by a chin hair. Not that I have chin hairs, I don't.

I walk away, reminding her we will be leaving in five minutes. I also remind her that going to the dining hall isn't a choice but how she behaves is a choice. "Do you think you are making the right choice?" Uh-Oh. Now she's pissed. She crawls after me like I am prey and tugs on my shirt as if she wants to fight. I calmly remove her hand and tell her that I will see her in the van. I tag my husband to take on the next phase with her while I get my other daughter shoed and place her in her car seat. We then wait inside the quiet and safe van. The door to the garage flings open, I think Sienna kicked it open. Fred is carrying her to the van. She is screaming, arms and legs flailing all around. We pull out of the drive way. Same as it ever was... one of my favorite sayings from a Talking Heads song bounces and mumbles around in my brain. These thoughts humor me while I hold steadfast to my own sanity.

I press the button on the sun roof to close it. Her screaming can penetrate through the body of the van and our neighbors don't need the sun roof opened to make the acoustics more clear. Thankfully, it is a quick two minute drive. Normally we would ride bikes but obviously that would be difficult today. We all get out of the van, all but the tantrum-tiger. The students from the private school walk by looking polished and proper and look at us. The faculty also look at us. I am always aware of the public eye watching carefully. I feel judged as if I am a child abuser. I swear to you that I am not. Although, there are times when we lose our tempers and we yell at her. I feel bad about those times because, if you realize and accept that she does have PDD-NOS and how difficult it is for her to maintain and manage her moods, then yelling at her when she struggles like this is equivalent to screaming at a disabled person in a wheelchair to get up and walk. Fred calmly tries to reason, negotiate, bribe. No can do.

She now has gained her composure but she sits stiffened, chin downward, staring at us with her eyes rolled up so all we can see is the whites of her eyes. A good look for the album cover of a heavy metal band. Wait... they don't make album covers. I am totally dating myself. I mean, a good look for an iTunes thumbnail... I'm telling you, I have to entertain myself during these crisis situations.

Somehow, we manage to all go into the dining hall. However, Sienna remains at the door, as if to make a statement to remind us she didn't want to come to the dining hall. She sits on the floor and then starts to growl and scream. "I WANNA GO HOME. I WANNA GO HOME. I WANNA GO HOME."

A nice lady from our community who volunteers at the private school walks by and says, "Well, sometimes you just have to ignore it." This nice lady also happens to be a Kindergarten teacher from Sienna's school. The same school that claims that nothing is wrong with my daughter. She shows no sign of autism or any other pervasive developmental problems at the school and that, "only the mother must need parenting classes and counseling." This is a phrase that the school's psychologist shared with my husband before our case conference last year. This phrase haunts me daily - and sometimes at night it wakes me up from a deep sleep.

We eat, put our dishes on the rack. Luckily, there were only a total of six of us in the dining hall tonight so we weren't too embarrassed. We are able to bribe Sienna to get in the van with a cookie. She of course was supposed to get in control by the time we got home. But she didn't gain control, so she lost her chance with the cookie. Good thing, because I need all the comfort food I can get right now. Sienna stomps in the house then starts hitting her head saying, "I'm a bad girl. I'm a bad girl..." Over and over again.

Is this typical? People say, "Well, all kids have tantrums right? Your kids are just normal. Maybe they are hungry, or tired or maybe you just expect too much from them or you don't discipline them enough."

Do you really think that the tantrum that I just described in this story is typical? It is for us. It is a typical tantrum. It happens when we don't expect it and then they don't happen when we might expect it. I am living on the edge of the unknown every minute of the day with both my daughters. I could share a typical tantrum that my two year who is also on the spectrum does too. I will save that for another post...

What makes our family dynamics more challenging is that our family and friends don't accept our issues as atypical. We aren't allowed to talk about it, get any sympathy for it, any respite. We are constantly judged by the public when we try to run errands. We don't do anything for fun anymore because something might go wrong. So, we stay home. We don't even go to church any more. Talk about the worst place to feel judged as a parent! Then we are judged because we are told that we don't expose the girls to enough that we don't go out enough. It is a never ending problem that every person we know is trying to suggest or give advice. Until you walk in my shoes, don't judge a mom with children on the spectrum. If you know someone who has a child on the spectrum, don't try to fix it. Don't try to minimize it.

And, a public message brought to you by a mom on the verge to losing her mind:

If a child has been diagnosed with an autism spectrum disorder, they cannot out grow it. It is not something that the parents did to them to cause it, and it is not contagious. Remember this.

Letting Go of the IEP

The case conference for Sienna is in five days.

I keep going back and forth on what my position will be during this conference. It was a year ago when we had our first case conference at Laketown Elementary. It was then that they had told me that the school's psychologist did not see anything in my daughter that would support our independent diagnoses and the previous school's IEP that we had brought along from Chicago. The IEP process in Chicago was so different than Laketown. In Chicago, the school system held my hand and partnered with our family. I safely trusted their opinions. Now, I am in a rural town. They are clueless about autism spectrum disorders. After digesting book after book and Googling the hell out of Autism, Asperger's, PDD-NOS, ADHD, Mood Disorders, Sensory Integration, Sensory Overload, Hyperlexia, Co-Morbidity, and the like, I am still a clueless parent when it comes to my own kids. I try to understand my rights as a parent, I try to remember conflict resolution, I try to realize my daughter's needs in the classroom. I am flying by the seat of my pants trying to parent my own children in the home, failing most of the time. It is impossible for me to educate and lead the school to help my daughter in the classroom, especially when they claim they don't see anything out of the ordinary.

The school's diagnosis stated that they didn't see anything that resembled autism. The psychologist suggested that I find counseling and parenting classes to help our conflict in the home. Sienna's Kindergarten teacher mentioned to me by email that she was so sad for Sienna. She suggested that Sienna was typical and the only thing wrong with her was that I had taken her to too many doctors for too many tests and that would result in a couple of sad days for her. She was referring the the week we had last spring when I couldn't get my five year old out of bed. She had no fever and no other illness that I could detect other than, dare I say it, depression. That saddens my heart to see my own daughter so limp that she isn't able to sit up to eat.

At our first case conference last fall, when they told me that nothing was wrong with my daughter, I was excited and more than ready to sign on the dotted line! "What? Nothing is wrong with Sienna?! Great!!! Coom-by-ya!" With pen in hand, I recalled a tip that I read on line about never agreeing or signing anything during an IEP meeting. Always take it home and sleep on it. That I did. And, but that night I had trouble sleeping. My youngest daughter was having a difficult night sleeping and whenever I would try to console her, I remembered what that counselor said about my parenting. I felt broken and nothing I did or didn't do could console my youngest. In fact, nothing I did or didn't do seemed right when I was trying to comfort Sienna all those sleepless nights during her infancy and toddler-hood.

The school seems to handle Sienna well. Sienna has been thriving since we have moved here. She gets in a high abilities program because she tested at the 99th percentile in reading and math. She has gotten 100s on her spelling tests. And, when asked, none of the recess aides or special ed or classroom teachers see anything out of the ordinary. They see a spunky, creative quirky styled little girl. And, isn't that what I want them to see?

Last year I spent so much energy fighting the case conference team. I turned my wheels in trying to convince them that something was wrong with her. I have decided that I don't want to do that any more. And, my therapist agrees so does my husband. On Monday, when we go in for our next case conference, they will most likely tell me again that Sienna doesn't need any services. That she is 'not eligible' for services. I think I will smile and simply say, "Her professional medical diagnoses, both privately submitted and the assessment acquired through the independent evaluation state that she has diagnoses that would allow services based on the IDEA. However, I agree that with all the intervention that we have been working on in the home in the past four years, Sienna is now thriving. We do have some goals for her that we would like your help with in the social arena for her and if I may consult with the teacher and counselor from time to time, I would appreciate that." And let it go. Let the school do what they need to.

Afterall, I have a two year old who stays home with me who is on the autism spectrum. I need to reserve my energy for her. I can't lead the school in helping them recognize the early signs of Asperger's. I used to tell myself that God called me to this town to help the other parents who couldn't help themselves win the fight with the school system in helping their children on the spectrum. But I can now hardly manage my own family let alone advocate for the entire town. In God I trust.

Somewhere

Somewhere, there is a mom who has a child with Autism.

This mom could be your cousin or niece, a neighbor, lady at church or in front of you at the grocery store. You might run in to her at a soccer game or at a new mom's play group in the neighborhood...

For full view, click here >>>

Life's a Beach

At the beach on Thursday, Sienna was enraged because her toddler sister, Sarah was getting all the attention from the family and me. Sienna went to grab an adult sized raft that Sarah, looking as cute as a spring bunny, was relaxing on. I saw the vengeance in Sienna's eyes and before she grabbed the mattress out from under her little sister, I stopped her and quietly told her if she didn't get control of her anger, she would have to sit on the blanket in a time out. She screamed or groaned or did something inappropriate, I actually forget some of the details because my adrenaline kicked in.

After I ushered her over the our blanket, I told her to sit down until she could get control. Like a hurricane, she growled, kicking sand, fluffing our blanket while sand blazed everywhere. We had friends and family sitting around with babies who were getting sandblasted. I tried to ignore her until I realized this, I walked up to her and told her we would have to go to leave and sit in the van until she got a grip. I had to toss her long body, arms and legs flailing over my shoulder and carry her up the van. Subtlety was no longer an option.

Sienna kicked and screamed in the van. She put a whole new spin on 'if the van is a rockin', don't come knockin'!"

Five minutes passed, it seemed like five hours to me. She was animalistic. I had to spank her bottom, just to send a shock to her system and for her to get into reality mode. After that, she kept saying repeatedly, "I'm bad. I need to be in jail..." while slapping her face and punching her head. Something that my therapist told me was typical with spectrum disorders. (When he told me this at our recent appointment a couple of days ago, I got teary-eyed. I am still in denial over having girls on the spectrum - I can convince others that they have it but not myself- still!!! I guess I am still hopeful.)

We then walked back to the beach. Friends and family offered condolences as if they just witnessed tragedy. Every encounter was as awkward as hearing conversations in a funeral home. I was consumed with embarrassment. As if the energy burned on being a good mom dealing with a child's tantrum wasn't enough, I had to expend extra energy worrying what everyone thought of me, hoping they'd still be my friend. I stewed on people's "friendly" suggestions on how I might have handled it better.

I wish I could start charging admission for the public entertainment, or at least have someone produce our lives in a reality TV program. I could use the money to pay for my therapy! My current issue I am struggling with is that I am trying to not let other's opinion ruin my life. I try to hard to impress others and when I have two kids on the spectrum while being new in a small town, I have to just let that go. How? I still don't know. I am a work in progress. I am sad that I had to let my career and all of the dreams surrounding a successful career go along my life in Chicago and now, my reputation in a new small town. I focus on stress management and continue to grieve it all.

God continues to mold me. Ouch.