March 1 – New battles

Ana is actually dancing with her fifth grade class!

 

About three months ago Ana’s father and I agreed for him to take a six month break in visitations in an effort for Ana to stabilize without the stress of bi-weekly visits to his house and for him to get help and training on how to best parent Ana. Fast forward three months and we have just began what is sure to be a nasty court battle. He insists this agreement was never made and I have just been refusing visitation.

Sigh.

The good news is that Ana is doing great! Her agitation is down. Her meds are down. Her self-injuring is way down. All proof that this break is, indeed, helping.

Now, don’t get me wrong, she is still no angel and there are still days where I want to beat my head against the wall. But, I think we are finally to a point where the anxiety has relaxed enough for us to really start attacking the RAD behaviors that turn her little world upside down.

**Sidenote*** Ana actually performed an entire dance number with her fifth grade class for parents and teachers. No joke! I never thought I’d see the day she voluntarily did something like that. (see pic above)

Now I am beginning the battle of unraveling her behaviors and symptoms to get the correct diagnosis. I’ve been doing a little research and am finding that ‘intellectual disability’ looks a lot like RAD. Hmmmm…it makes one think. I’ve been saying all along how there is no way her IQ score could be high when she refuses to try or cooperate while being tested.

Also, I’m hoping to determine and get a better diagnosis than Generalized Anxiety Disorder – it just doesn’t fit in my book. Her anxiety is anything but generalized!

January 4, 2015 – A new year awaits!

We survived another family pic day!

It’s been a busy last few months and honestly I’ve thought about writing several times but I waiting for some closure. Well, that closure just isn’t coming, so here I go….

First of all Ana is no longer having contact with her father upon mutual agreement between me and him. Basically, in a nutshell, they are unwilling to do what is necessary on their end to have a good (just good) visit with Ana, and do not want her destroying their home and injuring herself and them. Of course, there is much more going on then just their unwillingness to change their behavior and parenting – a two day visit is hard for Ana ANYWHERE, her anxiety is increasing, she resents her father, etc…

The end result, regardless, is that she is with us for at least the next six months, no breaks. This began Thanksgiving weekend and will end around the time school is out. At that time we will revisit this topic. Drew is still going every other weekend.

So far, Ana is doing impressively well with the arrangement. Her moods have stabilized and now we can begin working on her anxiety.

Ah, anxiety. Over the last few months she has picked off her big toe nail and thumb nail; she picks non-stop at her nails. She will scratch herself (like an itch) until she bleeds. She has started trying to ‘help’ loose teeth come out.

Actually tomorrow is her psych appointment where hopefully we’ll up the anti-anxiety meds!

Other than that things are about the same.

We are interviewing a new worker for her. I’m REQUIRING that all potential workers read Building the Bonds of Attachment so they understand fully what they are getting into. We’ll see how this goes.

It’s about that time to look into summer programs and see if there is anything she qualifies for and we can afford.

Hello, 2015. I hope you are good to us.

August 15 – Things are relatively calm as summer break comes to an end

‘No news is good news’ is my mantra and that certainly applies to Ana for the past couple weeks. Her new medication cocktail seems to be lowering her agitation. In fact, she hasn’t self-injured in FOUR DAYS!!! She returns to school next week and is excited. We are wrapping things up here for summer break and everything seems to be going well.

Tomorrow we are doing fun family stuff all day and already she is out of sorts. My parents are in town for the festivities and that is throwing her for a loop. In a 24 hour period she will be seeing grandparents, both sets of aunt and uncles and cousins, riding rides, and eating at her favorite restaurant. That might be too much but we will see. We have contingency plans in place for every step.

This week I had a little pity party for myself. For no good reason at all I took a look at my life versus the lives of other people with ‘normal’ kids and man! do they look different. And I felt angry. And sad. And depressed. For a few days I felt like throwing in the towel. I mean, am I actually accomplishing anything? Can Ana actually be saved at all or is she already broken?

Then after a heart to heart with myself and God I realized that a loooong time ago I asked God for wisdom and to use me to do something big (and I emphasized BIG). So, he gave me Ana. And Drew. And Grace. And Hannah and Grace mixed in just for fun. I don’t know anything harder or bigger or requiring more wisdom than raising this crew. So, I figured when I’m feeling all pithy, I should really be thanking God for giving me what I want and having enough faith in me to do the job right.

(Then that makes me think about the omniscient powers of God and that he knows all things before they happen and that he planned for me to have the kids because he already knew the outcome ((which I don’t I might add)) and all that just makes my head hurt so I quit thinking)

In the end, I say ‘Thank you, God, for all you give me’ and go to sleep.

Tomorrow is another day. And next week begins another school year. I need to enjoy the peace for the time being.

July 16 – It looks like no-go on treatment facility (but at least Ana is doing well)

Ana cheesin’

Ana’s doctor changed her medication; she is back on Risperodol. This seems like a good thing. Her agitation is waaaaay down but now the Zoloft doesn’t seem to be working as her OCD/anxiety issues are surging. The self-injuring is down a lot. After our last little ER visit she seems to be thinking long and hard about hitting her head. I was very glad to discover that concussions can last for weeks. She needs a reminder about hitting her head.

So, the treatment facility in New Mexico seems to have hit a dead end. She receives Medicaid due to a waiver and we were told that after 60 days out of state the waiver will be cut. Hence, her Medicaid will be cut. She does not qualify for SSI or straight Medicaid because of our income. That puts us back at square one. I mean, really, in my head we’re playing Chutes and Ladders and we just landed on the real big ol’ slide.

At least summer is half over. Ana’s teacher is coming over twice a week to work on school work with her to keep her busy little brain stimulated (our district doesn’t offer year long school). She seems to really enjoy the one-on-one attention! We also started back with occupational therapy. We had to wait until they had a home-therapy opening because her behaviors were too bad to go to the site for therapy.

For the time we are keepin’ on keeping on. This is one of those times when things are relatively quiet and calm with Ana. I relish these times because I know it won’t be long until we are in another crisis. Parents without kids like Ana just don’t get the constant rollercoaster ride we ride in this house.

I’m glad they don’t.

For their sake anyway.

 

July 2 – Another option possibly?

Ana’s therapist recently told us about a residential facility in New Mexico, Villa Santa Maria, that specializes in attachment disorders. I spoke to the director about Ana’s situation he seemed optimistic that he could help us.

What a relief!

Now I get to fight the Medicaid battle to get them to pay for it cause Lord knows we can’t afford $400/day!

I really hope we can get this for Ana. I would like her to try this center out before we get to a point where she has to leave our house for everyone’s safety. If she goes to this center and she still cannot live with us at least I will have known that we tried everything.

I am leaving this in the Lord’s hands. I know he will open the necessary doors for this to work if it is in His plan.

Please pray for us and for Ana.

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.