Sunday, September 22, 2013

What I Did Over Summer Vacation

Now that school has started back up, I will take a few minutes to reminisce about the first family vacation I have been on in more than five years.

It came about on a fluke. Sometime in July Kimani got sick right before a family birthday party. She stayed home with daddy while my mom and I drove with the four other kids to the birthday party a few hours from my house. On the way back my mom remarked that everyone was so good in the van that the trip was "easy". Right then a crazy idea occurred to me. Mom and I could drive these kids all the way to Tennessee to visit my dad and stepmom (who can no longer travel to us).

My husband agreed, plans were made, and a vacation was born.

On the way, we stayed overnight at a hotel with an indoor pool because I learned long ago that the hotel pool is the best way to break up a long drive.

We arrived at the house my dad built for my grandmother (which is right next to his own on the TN river) on what would have been her 100th birthday. I have not been there since before my grandmother died, so it was sad for me and I missed her terribly. It took my kids a few hours to stop running around like maniacs in the house which is about four times the space they are used to. My dad had gone out of his way to get baby gates to block certain doorways and the stairs. Ha, Autumn got through them in about five minutes. She was so proud of herself standing at the top landing.

My little daredevil.

We enjoyed a couple lazy days of visiting, playing, and fishing. My oldest son caught his first fish. He was so proud of it that my dad froze it and insisted we take it home to show daddy.

Playing doctor. Poor baby doll needed a shot.

Waiting for a nibble.

Showing off his first fish.

Mom and I loaded the kids up and drove them to Gatlinburg to visit the Ripley’s Aquarium (so worth it if you can ever get there).

Undersea awesomeness.

Taking a cuddle break.

My clowns checking out the clown fish inside the tank.

Jade wishing for a snack.

Walking through the aquarium tunnel admiring the sharks.

Masha and Autumn were awestruck.

The King crabs were a favorite of the kids but I love the jellyfish.


All of us posing in front of the tunnel mural.

We had only one afternoon of bad weather. And wow, did that monster storm ever come on fast. We barely made it back from the dock to the house without getting poured on. The boys loved watching the lightening, wind, and rain over the river from the safety of the couch.

Trees ravaged by the winds.

The next day we took them to the Knoxville zoo. School had already started for the kids in TN, so the zoo was fairly empty and the weather was perfect making for a delightful day.

Getting silly by the elephants.

Trying to get the gorilla to get up and play.

Enthralled with the meerkats.

They offer camel rides and for a few brief moments Autumn indicated that she wanted to do it. As the boys were climbing on, she came to her three year old senses and ran the other way.

The Knoxville zoo has a play area with a water stream that the kids can splash in. Masha showed great balance as she hopped over the stones. Autumn, not so much.



And Jade... that boy can’t go anywhere without attracting a little girl to him. He is a natural gentleman.

Family shot near the black bears. Oh my, a white tiger crashed our pose!

That evening everyone was exhausted, and though Autumn’s darling personality held up...

Her strength did not...

Every visit to TN ends with family photos in front of the fireplace. The kids were excited to pose with grandma but by the time it got to my turn they were getting antsy and bored.


Then we went over to grandpa’s for pictures and good-byes.

That little extra push to get back to that hotel with the indoor pool... so worth it!


Monkey see, monkey do!

So there you have it. Nine action packed days of travel and fun. We all missed daddy and Kimani and by the end the girls were asking me everyday, "Home? Daddy? Kimani?"

Yeah, they missed their daddy for a week, but I miss mine all the time... I love hanging out with my dad and I look forward to getting back to Tennessee soon.

(You might be wondering why we would not just all go. Kimani does travel in the car fairly well, and for the most part she enjoys riding in the stroller through entertaining places, but as you can see from the pictures the house is not and cannot easily be Kimani-proofed. And, the deciding factor was that both houses literally sit on the points of side-by-side capes jutting into the river; water on three sides with no fencing.)

View from outside grandpa’s front door, as beautiful as it is dangerous.

Wednesday, September 11, 2013

Some Kids Are Hard to Raise

It’s true, I assure you, there are children out there that are very hard to raise. I know this is a fact because I have one. If you don’t believe me, or just wish I would shut up now, you probably don’t have one.

If I had a dollar for every time I heard the words, "Oh, I could never do what you do" or the incredulous, "How do you do it?" my husband and I could go on a sweet vacation. (Oh wait no, we couldn’t because getting a babysitter for our kids is next to impossible... mainly because of that one.) And then there are the opposing comments from within the disability community, "all parenting is hard" and "there are no guarantees when it comes to baby-making."

Both of those messages are simplistic and dismissive toward the plight of a parent of a difficult child.

Let me make it clear that Kimani is not hard to raise because she has Down syndrome, she is hard because she is hard. My other two girls with Down syndrome are not hard to raise. Yes, people with disabilities might bring with them some complications that make your life less simple, less easy but in most cases the disability itself is not the ticket into the "hard to raise" club. And many, many children without an identified diagnosis or any label make it into the club by the time they are teenagers.

To you who compliments me says you could never raise Kimani, how come you never mention what your alternative would be? Would you institutionalize her? Kill her? Kill yourself? Adopt her out? Just curious.

To those who say that all parenting is hard. Yeah, it is. I have five other kids ranging from age 20 to age 3, and I know that there is work, heartache, and stress involved in raising children. But you need to understand, there is hard work and then there is HARD. So please stop silencing those who have situations you thankfully cannot even dream of. I know I am not supposed to spoil the narrative or god-forbid reinforce incorrect and outdated stereotypes and hopefully this post is not. (You read the part about this not being an issue limited to a specific disability or even disabilities in general, right?)

What makes a child hard to raise? I suppose each case is unique and complicated. It is like the perfect storm. And in that way, it is true that you never can be sure if your reproductive efforts will take you there.

(Hey snarkers, did TUC really let her kid pull her other kid’s hair while she took pictures? For the record Kimani was being verbally directed to cease and desist by her father who was 2 seconds away from rescuing Autumn.)

What are the characteristics of a hard to raise child? Well, now I only have mine to go by but I would say that if your child:
-- is not responsive to the usual (ok and even unusual) behavior reinforcers;
-- has no empathy toward others;
-- shows little or no affection;
-- is aggressive or violent toward themselves and/or others;
he or she is probably hard to raise.

I’m not just whining "Oh woe is me" or venting. I am telling you this for a reason. It is important that we allow parents of difficult to raise children to talk about it. We can’t keep telling them to STFU because they are somehow hurting the message. That message is still valid. This is not about Kimani. Kimani is fine. She is happy and she has all her needs met, and from her perspective life is as good as it gets. She deserves that. It is not her fault that she is hard to raise and she is in no way punished for it.

We the parents are the ones who are punished for it. If we are honest, and step off of the pedestal, we are judged as bad parents. If we keep up the facade that our child is mostly like your child, and that we have it all under control, we suffer from an indescribable loneliness and constant guilt.

But I am done with all of that crap because I am an awesome mother to a child who is really hard to raise.

Monday, September 9, 2013

On Becoming a Monster

How does a good mom become the mother that kills her child and herself? With just a little research into the question, you find that mothers killing their non-infant children and themselves are a rarity. The reason why it happens is usually attributed to a severe mental illness (depression), guilt, and a desire to "save their child" from something.

There has been a lot said about the Kelli/Issy Stapleton case (if you haven’t heard about it, a married with three children, mid-forties mom attempted to kill herself and her 14 year old autistic daughter last week) but since I can’t shake my feelings about it, I have to write it out of me.

At first I really couldn’t sort out my own thoughts while being barraged with judgements and opinions on the situation... a system failure, a monster mother who should rot in prison, a child with disabilities who is perfect, a special ed teacher who "wrecked the plan", a child with acute autism who was violent and horrible to live with, a mother who was always fighting for her daughter.

Very few people have walked in Kelli Stapleton’s shoes (yet most people insist they don’t need to in order to judge her) but the majority of those who are walking in her shoes do not decide to kill themselves and their child. I think we can all agree that in her shoes or out of them, Kelli made the wrong choice, but I wonder... why did she come to believe it was the best choice?

What makes someone in Kelli’s situation turn to death as the solution? Death for her beloved child and death for herself.

My first thought would be the lack of a psychological and emotional support system. Yeah, she was a blogger, but who did she have in her inner circle that she could talk to about her deepest, scariest thoughts? Without someone to talk to, a suffering mother has only her own heartbreaking narrative in her head. People say she should have reached out for "help" but the truth is that is not possible. Had Kelli told anyone that she was thinking about killing herself and Issy, she would have been reported and admitted. She would have been judged and she might have lost all her children. Surely in her mind, that would have only made the situation worse. But that is what she needed most, someone to talk to about how bad she was feeling without the fear of her honesty being used against her.

My next thought was corrosion. Two constant forces ate away at Kelli’s ability to maintain a healthy view of the situation. Day after day, week after week... for about 12 years she worked with and against the system to try to help her child. Navigating the system is a roller coaster ride and as the main project manager, Kelli clearly was suffering from battle fatigue... in fact those are her own words. People have pointed out that she had finally gotten what the family needed for Issy... a personal care aide and six months of in-patient therapy but those things weren’t a cure-all for this family and sadly they were interventions that came too late. While Kelli was likely feeling a high from securing those wins, having her daughter rejected from school and being told she should home school her was certainly a burst to her hopes that life was going to get easier.

The second force was Issy herself. Kelli and her younger daughter were the main targets of Issy’s aggression. I’d like to say that I cannot imagine a child that difficult, but I kinda can. I have a littler, adorable version of Issy. My daughter is still manageable size-wise but she is well on her way to tearing up our family. For example, when Kimani is angry she seeks out Autumn so that she can pull her hair. When she is frustrated, she screams continuously until everyone around her is shaken up. What will it be like, I wonder, when I cannot just scoop her up and put her in a safe quiet place to chill her out? Will she still target Autumn when they are teenagers? Will she rip her hair out, bite her, kick her, punch her, throw her to the ground? What I don’t know is how it must feel to be attacked by a teenager every single day. Kelli said that Issy was a member of the "hard to love club" and I can see that. I can understand how over time having such a dysfunctional parent/child or sibling/sibling relationship could erode one’s ability to cope.

How could those forces have been ameliorated to avoid this trainwreck? For starters there should have been a whole-family behavior therapy plan with supports made available to this family back when it was first clear that their child was extremely aggressive and capable of great violence. There also should be a system coordinator available to a family that needs services of any sort, but particularly when the needs are this high. Long ago Kelli needed someone who was an expert at service coordination to help her through the paperwork and to show her what kinds of supports are out there. Don’t tell me she had that because I will tell you that’s bullshit. We have the Medicaid waiver for Kimani and a wonderful Medicaid service coordinator but I am still the one who has to do the majority of the workload finding what is available and running around/completing paperwork to get on lists to make it happen. And as for in-home behavior management help? Not all states have it, and even where they do the lists are so long that getting it is almost impossible. I know this because we are still waiting.

Am I blaming the victim here? No, no. Issy did not deserve to be hurt as a response to her disability. I am simply trying to understand how a caregiver’s perception of what is right can get skewed. Who knows what went on between mother and daughter in the couple of days between Issy’s discharge from the treatment center and Kelli’s attempted murder/suicide. But what we do know is that a horrible idea visited Kelli, probably not for the first time, and she bought into it.

Am I saying that what I wrote here is how the breakdown happened for Kelli? Again, no. I don’t know her. I am just working out in my head how a good mom to a child with severe aggression issues falls down through the years and loses her sanity concerning what is right for her and her loved ones.

So what am I saying then? That I get it. I am walking in shoes very much like the ones Kelli had on nine years ago. I can see how any person who loves someone like Issy or Kimani could over time deteriorate without good supports. I can see how someone could develop a very altered view of what is right, what is best. I can see how monsters are made. I wish that Kelli could have seen it too.

Friday, September 6, 2013

Kimani's Pre-K Graduation

This was supposed to be a post telling you all about Kimani’s first days of Kindergarten but once I got started writing it, I realized that we can’t go from Pre-K to Kindy without some fanfare and a pile of cute graduation pictures, right?

On Friday August 16th, Kimani graduated from Pre-K and I did not cry. Maybe I teared up a little, but no drops spilled over. Was that because she is my 5th kid graduating from Pre-K or was it because she will be attending Mommy Homeschool Kindergarten this year instead of going to the private self-contained program we had agreed to last spring? Or was it because they covered up her adorable graduation dress with an over-sized tie-dye t-shirt and I was too annoyed to cry? I don’t know, and I don’t care, the whole thing was simply too exciting to analyze.

Here she is making her entrance into the gym


First the kids sang for us. Sometimes Kimani was cooperative and participated.


Reaching for the stars her certificate. (A certain someone could have thought about how her cleavage was going to show up in the pictures, or who knows... maybe she did.)


Kimani’s idea of posing for mama, NOT.


What she really thinks of all this fussing


Getting congratulatory kisses


Making mommy clap for her. Those are Jade’s hands joining in.


I kinda wish Kimani could stay in Pre-K forever since there seems to be no better next step for her.

Sunday, September 1, 2013

Facebook Statuses That Perplex Me

I am so angry right now... pm me for details.
Do I "like" it? No. Do I want to pm you and get into a private deets convo that is likely not my business? Most of the time, no. Do I ignore it and look like I don't care about your problems? Yes.

I'm cleaning up my FB account and deleting anyone who doesn't comment that they want to stay my friend.
At some point I either asked for (and got) your FB friendship or you asked for mine and I gave it. Now I have to re-up it? Really?

Random OMG statuses.
Was it a good thing or a bad thing? It drives me nuts to have to ask what happened. You know you want to tell us something, so just say it instead of leaving me befuddled.

Look at how perfect and beautiful and awesome I am.
I already think good things about you or we wouldn't be FB friends, so you don't need to remind me all the time. (Facetious versions of this status are always liked. )

I have a very serious health issue.
Do I "like" it? No of course not. Do I know what to say? Most of the time, no. Do I ignore it and look like a cold shit? Yes, and I am sorry about that.

I am leaving FB to spend more time with my family.
Everyone understands and gives you heartfelt "we'll miss you" comments. If I "like" this one, am I liking that you will be gone from my feed or that you are such a devoted mother/wife that you would sacrifice FB, IDK. Either way, most likely you'll only last a week, and then I will be annoyed that I had to spend time deciding if I should have "liked" your attempt to leave me.

Unfriend me now if you blah blah blah...
I swear I did not do whatever it is you think your friends are doing, but doggone it, now I am stressed out about it and feel the need to "like" it or comment, even though I don't like it and don't know what to say.

Share this if you love your sister, mother, kid with disabilities, or whatever.
I assure you that I appropriately love the people and things that matter. Please don't ask me to prove it. And if the status was amazing, I'd share it without you having to ask me to. I'm cool like that.

Thank you Jesus for keeping your promises to your most faithful and answering my prayer.
A simple thank you would do. The rest of it simply insinuates that those of us without an answer (or the answer we wanted) are somehow inferior Christians.

Statuses #madeupofreallylongandhardtoreadhashtags.
I really want to know what you have to say, I really do. I just don't have the energy to figure it out. And just on general principle, I can't "like" it even if I do figure it out because I don't want to encourage #morefreakinhardtoreadstatuses

If you have posted a status similar to one on this list, don’t feel bad; so have I. #3 guilty as charged, but I swear to you that I am in OMG status rehab.