June 25 – Even our therapist is depressed

We just survived vacation. Ana is home for the summer along with her four siblings. Life is challenging to say the least.

The past few days have been very hard for me because of Ana’s CONSTANT behaviors. Nothing she is doing is exceptionally bad or destructive, just constant. With nothing to focus on (like school or a hobby) she spends all of her time annoying people. Being the fine RAD specimen that she is she also takes opportunities to  increase the chaos when another child has a bad moment.

I am at the end of my rope. Yesterday we went to her weekly therapist appointment and the therapist acknowledged my feelings, repeatedly told me she believed me (most people don’t), and agreed that there are not many options for Ana. And the few options that are available are grim.

Option 1 – We keep on keeping on

Positives: Ana stays home and continues to build attachments to our family and community

Negatives: Ana stays home and continues to annoy everyone and holds our family prisoner to her behaviors. My marriage deteriorates. My children don’t want to be here.

Option 2 – Ana is placed in a residential facility

Positives: Our family is free from the reign of Ana

Negatives: The only residential centers that will take Ana with her physical disabilities and non-verbal status would crush her soul and leave her a rocking/stemming shell of a child, most likely permanently eradicating any hope of her success as a human being.

Option 3 – Someone qualified to work with Ana appears

Positives: Ana could get the one-on-one she desperately desires. I am freed up to tend to my other children’s needs.

Negatives: We’ve tried for four years to find such a person with no luck. None. Only God could send this person, most likely floating down from the sky by umbrella.

As you can see, the summer is not looking all that good for us. I really get by hour by hour. I am incredibly grateful for the good hours and pray for endurance for the bad ones.

We changed her meds a little bit to see if we can attack the problem from that angle. Hopefully, we’ll get a little relief.

Only 8 more weeks till school is back in session. God grant me the strength….`

 

Dear mom glaring at me in the ride line at the themepark:

Hi. You don’t know me and I don’t know you, but you are glaring at me and my children right now and seeing as we’re all confined to an itty-bitty tiny space in the ride line, I think I should say a few words to you (on my blog at least).

First of all, I can see that you are irked because we are in the ‘disability line’ of the ride that your angel has been standing in for the last 40 minutes. I get it. You’re tired. Your kid is tired. It’s hot. My kids look totally normal, so why do we get to cut to the front of the line?

The fact that my ‘special kid’ looks normal is a tribute to this disability line. Believe me, you would not want to be standing near us if we had to wait 45 minutes to ride this one minute ride! My daughter (one of my three with disabilities) has a genetic disorder very similar to autism and at three years old cannot stand in line. It may look like she is just a bratty kid throwing a fit when we attempt to do something like stand in a line, but in fact it is a sensory meltdown you would be guaranteed to observe. That meltdown would take us about one hour to get through. If we got through it at all.

Probably, she would go into meltdown mode and not be able to shake it because this theme park has so much sensory stimulation.

That is why we are in the disability line.

For her, at least.

So, why do her siblings get to tag along? Why can’t they stand in the regular line like all the other kids?

My six year old (typical) daughter summed it up perfectly. She calls their disability card the “Special Card” because, as she says, “We’re special and get to jump to the front of the line because of Ana and Grace!”

These siblings spend every day of their life doing damage control for their disabled sisters, fielding question and question about their sisters, standing in humiliation while their sisters meltdown or destroy something out in public, and are ostracized by other children at public playgrounds or museums or events because their sisters are different. They DESERVE a day to be special. Not just a day to be special but a day to enjoy an amusement park with sisters who are NOT melting down, destroying property, or otherwise causing a big scene.

So that, glaring lady, is precisely why we are over in the short line and your children are over in the long line. From the hot and humid place you are standing, it may not be fair even with my explanation, but consider this as my closing thought. You get to leave this park tonight with your typical kid and go back to your life with a typical kid where you never consider what your child can destroy when you walk in a store or someone’s house, where you don’t have to do your own safety-check of playgrounds and parks to make sure your kid won’t die in a very creative fashion, where you don’t go to ten therapy appointments a week and at least one official or unofficial school meeting a week, where you don’t have to search far and wide to find a qualified sitter to watch your children so you and your husband can go out to dinner once a year.

In fact, you probably never think about the things that dominate my life. Savor that. When you see my children rather than glare at me for being in the disability line, thank God for having kids that don’t qualify.

June 6 – Ana upped the ante

torez special needs orphanage

torez special needs orphanage

For the past four months Ana has been going to her dad’s house – with Drew – every other weekend. Every trip Ana ups the ante a little in a classic RAD game called “Will You Still Love me If I….?” Every trip has resulted in a more frustrated and more angry dad. Even though it probably doesn’t help I tell him after he tells me all that Ana did while at his house, “Well, next time it will be worse.”

This past trip Ana really outdid herself. According to dad, while enjoying a relaxing day in the backyard, grilling, catching some rays – out of the blue – Ana busted her head through their back door.

Hold. The. Phone.

She what?

Yep, busted out the back door. And this was a very old door attached to a very old house meaning this was some heavy duty, thick glass. The end result was an Ana emergency room visit, five stitches in her ear, and an a phone call to me.

After the emergency passed and the blood was cleaned up their dad called me to tell me she needed to leave. Like now. I told him no. That didn’t go over very well. I explained the emergency was over. She was stitched up and there was no reason to cut the visit short. In fact, the best thing for them to do was to get back on the routine as quickly as possible. That REALLY did not go over well!

I was told the incident was my fault (totally, 100%, in no uncertain terms), I ruined her (by doping her up with the wrong drugs), I ruined Drew (ditto on the doping up), she was never coming back to his house, she needed to be institutionalized, and I was an awful person (okay, he didn’t say that but he might as well have).

My response was my beginning-to-get-old spiel with the high points of 1) I cannot control her behavior when she is at his house – that is his responsibility, 2) Doctors are yet to give me script writing privileges seeing as I’m not a doctor or even an NP, 3) He is fifty years too late for the whole institution quick-fix, and 4) Most people think I’m a nice, good person including the doctors HE HAS NEVER TALKED TO OR VISITED.

Unfortunately, his colorfully worded diatribe was witnessed by both Drew and Ana as he chose to yell at me on the phone in his living room. Ana is more angry (if that is even possible) at her dad and Drew has announced that he will not be getting him a Father’s Day gift. Neither child appreciates it when their dad cusses out mommy.

*Funny side note – Drew told me after he got home that I should hang up the phone when daddy starts calling me names. I responded that daddy doesn’t call me names because if he did I most definitely would hang up the phone (those boundaries have already been established). Drew’s response after a few seconds of deep thought? “Oh, I guess he called you all that stuff after he got off the phone.”

And the beat goes on.

Finally, though, I am making a legal attempt to stop this nonsensical cycle and am start the wheels moving to amend visitation and custody. Dad says he and the kids’ stepmom will see a family therapist so that they can be coached in parenting techniques specific to RAD. I am not holding my breath, though I do believe God can do anything – even help my ex-husband.

Even though I stand firmly behind my belief that Ana did not intend to bust their door and go get stitches, she did succeed in pushing a lot of her dad’s and stepmom’s buttons and cause LOTS of drama. That is a RAD kids’ special power. We have spent the last week trying to minimize the incident and go back to life as normal as possible.