It has now officially been one year since my friend disappeared into thin air. A long year full of looking, waiting, worrying, crying, missing.
Actually, can I even call her friend? She is so much more.
Even distant family.
All that and more and I miss her so, so, so very much.
I often can’t even think of her anymore, I have to push it all away, or I cry. And when I cry, I will get a bad headache anywhere from immediately to 12 hours later. So when it starts back up, I have to take hold of my brain, my heart, and just shut it all down. I know it’s not good to bottle it all up but I can hardly just continue to lose it when my little daughter asks me where she is or asks if we are still looking for her.
Even my image here is very emotional. I took it as a screenshot during a video. For several minutes in this video, we are goofing off and she is laughing nearly the whole time. Sometimes I play it just so I can hear her again. This video is precious to me more than most others. It’s something only very few people have seen, I am selfish in a way, I want to keep it all to myself.
Just over a year ago on July 4th was the last time I count as when I saw her. I did see her briefly on the 6th and for a second, from a distance, on the 7th. My heart aches with the knowledge I have now, that I obtained about 11 am on the 8th. If only I had known 12 hours earlier, I would have dropped everything to go and stop this from happening.
I won’t ever forget that day. I was at my laptop when I got the text from my husband that simply said “_____ is missing.” My first thought was that she was probably off on some adventure that she is known for. She can’t be gone. But she is. It sank in after that and I wanted to just crawl into a hole and pull it in after me. Such a helpless feeling, knowing there’s something seriously wrong and you can’t do anything about it. Or talk to anyone about it, either. Because of my husband’s job, I sometimes find out things I can’t talk about. (more…)
No, this isn’t on immigrants or tourists or anything like that. I’m talking about my own daughter, born in the good ole US of A and always exposed to English. However, it’s as if she has to be taught to speak it rather than her native tongue.
You see, her native language was made up of pretty much only the sounds “huh,” and “uh” at various inflection.
When she was 2, she was diagnosed with apraxia of speech which is defined as “Apraxia of speech (AOS) is an acquired oral motor speech disorder affecting an individual’s ability to translate conscious speech plans into motor plans, which results in limited and difficult speech ability. By the definition of apraxia, AOS affects volitional (willful or purposeful) movement patterns, however AOS usually also affects automatic speech.”
This is our journey through apraxia of speech thus far…
Our journey started before she was born, but I won’t go too far into that this time around. In short, she’s my little miracle in the first place, my “water” broke the day before 21 weeks but by the grace of God, she managed to stay “in there” until the day she was 29 weeks. She spent just over 3 months in the NICU. It was hard to watch other babies come and go while she stayed, even some that had been born younger than she had got to go home before she did. This was because she was further behind than “normal” 29 weekers, due to next to no fluid to circulate through her lungs during those 8 weeks.
She had been born with a grade 1 brain hemorrhage and while at a year old when she had an MRI to check up on it and the doctor said he could not even tell that it had been there, we have no idea if this or something else is what caused her apraxia. Either way, at the time other kids were forming sounds that would soon turn into words, my girl was telling whole stories with only the “huh” sound. We even began to recognize certain words, like “butterfly,” based on how her inflection was, “huhh huuuh.” She would come up to me, we’re talking 2 years of age, and wave her arms around pointing at things and “huh-ing”, just telling me a story.
We had an evaluation at a children’s hospital for both speech and occupational therapy and were sent with “we don’t know” to another hospital. At this time, I was concerned that we were possibly looking at autism (there were other things that made me think this at the time) but 5 seconds into meeting her at the second hospital, the woman doing the evaluation said no, not autism. At the end of the meeting we had our diagnosis. From there, we were able to get some speech therapy at home through Missouri First Steps. She was even able to have the same therapist that she would later get in the ECE program at the local school, starting when she turned 3.
Around age 4 I realized she wasn’t really progressing that much. It kind of actually gave me a freak-out day. That moment when you realize your child may never have her own words, may never speak without difficulty. There were times her teachers would report that she had said huge words like “hamburger” and “pineapple.” I was so surprised, she never pulled off anything even close at home. We finally came to the conclusion that sometimes it was spontaneous, like if she wasn’t thinking about it, because she was never able to repeat it. So we did two things to help her further along.
The first was to get her an iPad. Sounds crazy but there is a great program out there called Proloquo2Go. It was first suggested to us by her school therapist that she start doing something called the Picture Exchange Communication System, or PECS for short. Simply, the non-verbal person uses pictures, usually labeled with the words, to form a sentence on the sentence strip to communicate what they need to say. Very easy but I was worried that we would need this more long term and I thought it would be too difficult to keep it updated for her so I started looking for a digital version. Proloquo2Go was the answer. Of course, this was an expensive system to get started with, but it was fully worth it. She picked it up quickly and soon was able to say things like “I want chicken nuggets” instead of just “huh-ing” or screaming at me. The frustration level in our household due to non-communication went down about 50% at that time. We even got some laughs from it – there was one time we were about to go into a store and I asked her if she was going to be good in there, it was just pure chance but immediately she hit a button that said aloud to me, “no dice.” I about died, it was hilarious.
Secondly we started looking into private speech therapy and found a place that she would attend for approximately another year before we ended up switching to PS Kids in St. Louis due to crazy changes the first place made such as changing all therapies to a half hour max. That really didn’t work for us, I was already driving her nearly an hour there then they’d take 5-10 minutes before and after talking to the parents which left 10-20 minutes of therapy during which there was “settling in” time! Not just this, but they were having a crazy amount of turn-over with therapists. I know it sounds like we’ve been to a lot, and we have, but this was excessive. There was one week we were told “here is your new therapist” only to have a different one the following week, and that woman only lasted 2 weeks! That was just too much. We were able to attend the first place out of our own pockets at first but it was really expensive – our insurance has one of the higher co-pays, I’m told, for speech and occupational therapy – so it became impossible for us to afford it, we were hitting bottom in our checking account every week. We took a little time off as school ended that year while I looked for a grant we could apply for. I waded through a lot of stuff – I had a list of websites 5 pages long I’d picked up there but through the whole thing, I only found 2 that looked like we could qualify for. Most grants wanted kids who were of “greater need” or had more extensive disabilities, some weren’t even about speech at all. I finally found two and while we were rejected by the first, we were awarded a grant by Small Steps in Speech. We were able to use this grant to pay our insurance co-pays the remaining time here. I keep meaning to write a testimonial for SSIS, maybe this post will help get me moving along.
I had tried to apply for only one grant at a time, I really did not want to happen to get accepted by more than we could or should use, but due to some confusion with our address, I didn’t hear back from SSIS at first and applied with the United Healthcare Children’s Foundation and we were awarded a grant that we used at PS Kids, who I cannot speak highly enough of. During this time, we had also gotten on the waiting list for the Walker Scottish Rite Clinic. It’s really been amazing how this has worked out. She was able to take a little time off then start at WSRC but when they lost their speech therapist at our location earlier this year, we went back to PS Kids on our second (and final) grant from the UHCCF. We were already back there on this grant with occupational therapy but this time I had seen the foresight to apply to include both therapies in the grant (her first one was only for speech). So it was back to PS Kids for speech as well and it’s only been recently that we have stopped going there. I kid you not, this worked out perfectly: our last day at PS Kids, when the grant and our insurance limit ran out, was her first day back at WSRC with the new speech therapist. I could not have asked for better timing! She will be in this program until she turns 7 years old, then she will have graduated out. WSRC is not only half the distance to us but is run by donations. It’s a bit of a change from PS Kids as it’s very one-on-one and a lot quieter as there are no other children there at the same time. Not that it’s bad at PS Kids, it’s just different. Both ways have ups and downs and I think that as we go into school starting this fall, the lower amount of stimuli at speech will help her not be so overwhelmed.
We are so proud of her progress, it has been really amazing to watch. I think part of the reason she’s really started to make more progress since we started with private therapy was not just additional therapies but as she gets older, she has started to develop a real want to work on it herself. She was just so little before. Then one day, I tried to hand her the iPad and she said, “No, Mama, I talk.” Of course, she still claims the silly thing, but now she only watches videos and plays games on it, we don’t even have the app on there anymore (not enough room for all her photos then, you see).
Our lives are not fully without frustration in communication yet, there’s at least once a day when I still have a hard time understanding her, but it’s a million times better than it was. Though we are still working on some of the behavioral issues that have come up because of this (you know, the whole, “I can’t ask for it so I’m just going to run off and do it myself” thing), it’s so much better. She can now really tell me stories. She can tell me if something scares her or what she has dreamed about last night. Now, in the mornings I hear “good morning, Mama” and at night, “good night, Mama.” About 400 times a day – no joke – she says, “I love you, Mama.”
And besides all that, she can now talk to her friends and playmates. She does tend to get along better with kids a bit younger than she is but there is one little boy at church who melts my heart – he tells his mom he takes real good care of her and he does. Sometimes kids her age have looked at her when she speaks, or in response to some of the ways she acts, like she has three heads. I know some of them don’t “get” her, but that little boy does, it’s so very sweet. And now, she’s able to tell me that he’s her best friend. <3
I hadn’t bowled in about 10 years or more but in April we took the kids for the little one’s birthday, it’s what she wanted to do. I had signed them both up for the Kids Bowl Free program. Pretty good deal, even with buying the family pass which I don’t plan on really using anymore because we both hurt ourselves bowling with the kids that day. That’s my shooting arm, can’t risk it, ha. So a couple of weeks ago I took them alone and they bowled without me. Didn’t get much reading done but they had a blast. Hopefully going to take the little one again within the next few days. We’d probably go more often if the closest alley still wasn’t 30 miles away, but it only takes about an hour for the two of them to bowl a game (and that was with issues with the lanes between games) so it’s a great stop-over/breather for a few min.
Today marked the 6th month anniversary of her disappearance. I still can’t believe it. It’s still so unreal, it’s not really happening. I’ve had to turn off a lot of emotions or I’d be losing it all the time. K still points out her picture in the missing posters when she sees one. Sometimes she gets excited as if it means they found her. K doesn’t understand, but how can you expect a 5 year old to comprehend this when adults don’t get it either? I’ve even had little mini arguments about this with her – there’s a few ladies at church who have the same hair color and sometimes K insists that it’s her. I don’t like breaking the heart of a kid but we also can’t have her thinking these ladies are her, she was addressing one as such and that breaks everyone’s heart.
And the nasty people are still out there. I don’t understand why the internet makes people think that they can just say whatever they want to, no matter who they might hurt. These jerks don’t know the family or the friends yet they speak as if the ideas they have formed in their twisted little heads are true. They don’t see the husband losing too much weight because he’s still too upset to eat, having aged an extra 10 years. They don’t see friends who are holding back the tears because her name has popped into their heads for whatever reason. Maybe they don’t see that by trying to hurt the person they are assuming is guilty, they are hurting hundreds of other people, too. Nah, who am I kidding? Sure they see that. They just don’t care.
Maybe this is why I woke up ill today. I couldn’t face the day. I slept it away.
It has now been 2 weeks, 3 days, and 10 hours, and 22 minutes.
It saddens me to say that I think I am now “used” to her being gone. I hate that. I hate having life turned upside down for not just me but everyone who knows her, and especially for my kids. For them and for my own health, I’m forcing myself to try to get back to “normal.” At least I can say I am finally to the point where she does not occupy my EVERY thought. Not say she’s not on my mind, because she is but I’ve been able to pull myself back from the despairing depression-inducing dwelling. I’ve been able to do a photo session and have another one coming up, that gives me something to occupy myself with. I also found diving into crochet and a good program on my laptop helps.
There was about a week of solid frustration. EVERYONE was talking to me about it, I couldn’t get away. And they couldn’t just have quiet thoughts coupled with “I don’t know,” which is all I could offer, but I felt like I was being constantly questioned and prodded for information. People were stopping by house to ask, people I don’t know were calling and texting me, people would see me in a restaurant where I was trying to GET AWAY for a few hours, and stop and ask me… “So what do you think happened? No, really, what do YOU think?”
I DON’T KNOW!!
And I am not even immediate family. I just seem to be, for some strange reason, an outsider’s supposed link to the inside. (more…)