Monday, December 3, 2012

That Other Kid

I feel like this blog tends to be pretty Aria-centered. I think this happens because Aria is where most of the drama lies. I choose to speak about Aria because, frankly, parenting a child like Aria is emotionally taxing and I need a place to process those emotions.

I suppose a therapist's couch would be a good place for processing my emotions but anyone who has a kid as involved as Aria knows that we are constantly on the run. The thought of adding one more thing to my schedule makes me want to literally hurl myself out a window. So this is my therapy. This is where I process my emotions. And you all get to see it unfold. Lucky you.

The thing is that I've been purposely not talking about my big girl, Daisy. It's not that there isn't any drama surrounding her. It's just that I think everyone already thinks my life is such a trainwreck that I feel like if I were to talk about what is going on with Daisy that people would start to scratch their heads and wonder "what is this chicks malfunction?"

But, alas, I'm getting ready to lay it all out here. Truthfully, Daisy is the one who I cry the most about these days. She's the reason I lose sleep. She's the reason I've started to live my life differently and the reason why I sometimes just don't want to get out of bed in the morning. I just can't believe that this is my life. This is not the way my life was supposed to be and it certainly is not the way life should be for my children.

But, even though there are times when I fantasize about running away my beautiful girls are the reason I don't run. They are the reason I pull myself out of bed every day, slap a smile on my face, and make the choice to create lasting family memories. We all deserve that. Daisy and Aria deserve a smiling, energetic, and interactive mama. So that what I choose to give them.
Note: The next few paragraphs are really not my reason for writing this post. I'm just re-explaining a few things about Daisy that I wrote long ago.
A long time ago I wrote about the issues Daisy was having with ataxia. I wrote about our family's connection to ALD. I wrote that we always knew both our girls would be carriers and that meant that any son they had would have a 50% chance of having ALD and would likely deal with diet restrictions, would use Lorenzo's Oil in their youth, and would be on steroids for life. We never worried about our daughters carrying ALD because there really should be nothing to worry about. Women who carry ALD are affected much differently than the men with the active form of the disease. Women carriers tend be be affected with ataxia much later in life (i.e. one family member just turned 60 and is just now starting to use a walker to get around, another just turned 31 and is starting to struggle with balance and coordination, and another is nearly 40 and has no symptoms. All of these women have one son affected by ALD and all of these boys/men are doing well by following a strict diet, using Lorenzo's Oil, and taking steroids).

So, when Daisy started losing some of her gross and fine motor skills (actually losing the ability to walk at one point) doctors did not think ALD had anything to do with it. There have been literally a couple of cases of young female carriers affected by the disease EVER. Of course the geneticists and neurologists while consulting with the big ALD doctor out east tested for every other disease they could think of that could be causing Daisy's symptoms. All tests came back negative. We do know that Daisy's very long chain fatty acids (VLCFA) are through the roof but we also know that some asymptomatic carriers have high levels of VLCFA too. Truthfully there is no way to know if Daisy's ataxia (or, if you want to get really picky, the ataxia of the other female carriers in our family described above) is caused by her ALD carrier status. It's just an association.

To reiterate, we do know that it is quite common for older women who carry ALD to have symptoms but ALMOST unheard of for a female carrier of Daisy's age to be affected. What are the chances that our family would be served that shit sandwich too? Pretty unlikely. Plus there is no treatment for female carriers affected at this time.

The neurologists have labeled Daisy as having "progressive ataxia" with no definitive cause of origin.

About two years ago we started all sorts of therapies with Daisy to help deal with the ataxia. I don't know if I agree that whatever is going on is "progressive" since she seems to have plateaued. With that said, I don't feel like her ataxia has improved much with therapies so much as she has gotten very good at dealing with her awkward gait. At this point Daisy runs fast and she jumps well. She just looks odd doing it and causes everyone to worry that she is going to fall. But, while she falls more often than your average kid, she doesn't fall as often as she once did. Daisy makes it work and I do believe that Daisy is going to be okay in this respect. We owe a million and one thanks to her therapists for this.
Moving on to the point of this post...
Daisy is different than the other kids and I'm not referring to her ataxia when I say that. I always try to find a way to blame myself for the way she is or I try to convince myself that our often unstable life with Aria has something to do with her behaviors. It's easier that way because then, in my mind, there's hope that she will just be "normal" once our life becomes a little more stable and we aren't in the hospital all the time.

But I know it's not my fault. She is who she is because that is who she is meant to be. Writing about it here is how I'm going to learn to become okay with it.

When Daisy was about 4 months old I started taking her to an infant library program. The first day was really hard for her. After a few horrified screams when people would clap along to the music the leader of the program had to ask everyone to please not clap anymore. The sound was just too much for Daisy to handle. She also just did not want the other kids near her.

When Daisy turned six months we tried to get her to take her first solid foods. It was an epic failure. I am not exaggerating when I say that Daisy never ate baby food. The goopy texture was simply too much for her to handle. Feeding has always been an issue for Daisy and to this date she only eats a small number of foods and has never even had a piece of bread, pasta, or anything that can be eaten off a spoon. It is all too overwhelming for her. She recently started touching bread and pasta for the first time and will transfer it between containers. I'm hopeful that her willingness to touch these "scary" foods with her fingers will one day turn into actually taking a bite. Daisy has spent the last two years working with an OT and nutritionist to get her to eat. We've had little success in getting her to eat different foods but have found ways to supplement her diet so that she remains healthy.

Touching things has always been hard for Daisy. Her first summer was quite scary because summer means sitting in the grass. Oh the horror! And every winter is hard because winter means wearing shoes, socks, and - gasp! - clothing. Daisy has gotten over the grass thing (but won't go on the grass in bare feet) and has started to play on playgrounds with wood chips or stones on the ground so long as she's allowed to excessively wipe her hands. Daisy started touching playdough about six months ago. She doesn't like to actually pick it up but she will poke it with her fingers. We make a little more progress toward touching "scary" things each day and Daisy even recently started cracking eggs for me (so long as she can excessively wipe her hands afterward).

And then there are the social problems. This is where I'm really starting to struggle these days.
Around nine months of age Daisy became the biting kid. She was also the hitting kid and the pushing kid and the screaming kid. We eventually got over the biting thing by giving her something else to bite on. If there is a biting toy nearby and she feels overwhelmed she will bite that. She no longer bites a toy when upset. Instead she'll just bite a wall, the floor, or herself. Nothing awkward about having the self-injurious screaming kid. Wearing a compression vest and using a sensory diet has really seemed to help with some of these issues although somedays nothing seems to help.

I used to host lots of play groups. I just can't anymore. Daisy screams pretty much the whole time other kids are over. Sometimes she does okay in other people's homes by finding her own little space in the corner and keeping to herself but other times it is just a disaster. It's socially isolating to say the least. I'm almost thankful on the days that Aria's busy appointment schedule prevents us from attending playgroup. I simply don't get to enjoy myself because I'm so afraid of how Daisy will behave.

Daisy has been receiving speech therapy for a little over a year now. Her evaluations show that her speech and language is at an age appropriate level. The problem is that she won't use speech socially. She will not answer questions, ask questions, or use spontaneous speech. She can however speak in full sentences and has an excellent vocabulary if she is playing independently or describing an object. She memorized books and tv shows and recites them if something in her environment reminds her of them. Her echolalia is out of control. So is her echopraxia. To be honest, her ability to watch a commercial once and then repeat every action and word verbatim kind of cracks me up.

I can't tell you the last time my child looked me in the eye. And she has such beautiful eyes.

The good thing is that Daisy is freakishly mad scientist smart. She just turned three and she reads and counts forward and backward to twenty. The even better thing is that we didn't really have to teach her these skills. She just kind of taught herself.

Daisy is our super smart yet socially awkward beautifully amazing little girl.

She is autistic.

The label recently given to her was PDD-NOS.

We are seeking further evaluation by a multidisciplinary team (when I was doing my clinical training I worked on one of these teams and I think there would be a lot of value in having Daisy thoroughly evaluated at a multidisciplinary psychoeducational evaluation center). There is no doubt in my mind that Daisy is on the autism spectrum. I just want to ensure she is placed in the right domain for interventional reasons.

Daisy has been receiving services for a couple of years now but will begin receiving services at an ABA clinic this Thursday. We will also be attending our first support group Thursday evening.

I am hopeful for Daisy's future. She is high functioning (spectrum-wise) and she is cognitively advanced.

I know she is going to be okay.


Jenna said...

I am sorry, I think about Daisy often and wonder how she is doing. I am not sure what all you have tested Daisy for but have you guys looked into mito? (Mitochondrial diease) My son originally had an autism dx, not trying to compare, just stating, but we are not testing for mito. Mito and autism are very closely related and might explain the ataxia. If it hasn't already been ruled out if you have the time you should check it out.

A said...

Xq28 is a pretty intense neighborhood. The "Rett gene" is right up the street from the one associated with ALD. Whatever is going on with Daisy, clearly she has some amazing strengths, and clearly she is using them to explore her interests. And she's got the advantage of having a really fantastic mother.

Claire said...

I always let A or Elizabeth write all the good and terribly appropriate comments because really, I have no clue what to say. Keep writing. Hugs.

kristen said...

Thank you for sharing, Rachael. I don't know how you and Kevin are doing it and remaining to be such nice, caring people.

I'd love to do a play date sometime soon--if you're up for it. Or an adult play date (sounds dirtier than I mean) with booze!

LoopyKat said...

As I read this my head kept saying Autism!! As a parent with 2 children on the spectrum I could see the signs, your Daisy is totally adorable just her baby sister is too. Being an autism mum sucks some days as you know but our children are amazing!!

Tonight I'm celebrating my girl eating meat n 2 veg for dinner :)

Barbara said...

2 other blogs for reference:

ataxia(even if the source of the problem is not the same, her story oozes of hope for improvement over time in a non-progressive ataxia)

autism (even if another treatable source is found, the crowd at this blog are about the best)

Catherine said...

Just hugs for you and your girls. I wish I lived nearby to give you some respite days.