Monday, December 3, 2012

Still perfect

For the sake of keeping people informed, that want to be informed, here's where we are now with Davey Dude:

We've been doing speech therapy now for almost 3 months.  I'm so glad we decided to do it.  The differences in Davey have been really great.  He's so happy again.  He's understanding what we're saying and he's able to communicate certain needs of his own.  We still have a lot of work to do, but to see him happy and comfortable in his world, when he was starting to get so frustrated, it a relief beyond anything you can imagine.

About two weeks ago we got a phone call that the kids insurance was no longer going to pay for Davey's speech therapy.  Speech delays, on their own, are not covered by our insurance anymore.  I was immediately thrown back into this scary place where I had NO idea what to do.  After reading our insurance manual (that thing is a monster), I found that if  a behavioral psychologist and a pediatrician signed off on a speech therapy request, the insurance company would cover him.  So we set up an appointment on Friday and lucked out that the behavioral psychologist had a cancellation this morning so we could get in right away.

These appointments with a behavioral psychologist are crazy in depth.  Three hours of questions on top of questions while we watch to see how he plays with toys.  It's enough to make you go insane because all you're thinking about is "Can we get to the end of this so you can tell me what we're up against?"  And then of course, three hours later, the psychologist couldn't tell us anything.  She wanted to meet with his speech therapist to compile all of the information she could to pinpoint exactly what's going on.  What she would tell me is that if he does have autism it's very slight and that it wouldn't even be under the umbrella of Autism Spectrum Disorder.  Apparently there are cases of autism that just barely qualify as autism, but aren't in the spectrum.  It's very confusing.  It could also be something called P.D.D., or Pervasive Defiant Disorder.  It seems like P.D.D. and O.D.D. (Oppositional Defiant Disorder) are disorders that ride the line of autism but cannot be classified as autism.  Basically, besides the delay in speech, Davey doesn't get rewards and consequences.  He doesn't care about them.  This isn't to say he's a defiant kid or unruly.  He's quite the opposite.  He's one of the easiest kids.  He's so pleased with everything.  But unless it's something he's interested in, he won't attend to it.  If you asked Davey to clean up his room so he can earn a sticker, he wouldn't care about the sticker.  This can become a problem when he reaches school age because if a teacher says "It's circle time", even if Davey knows what circle time means, he doesn't make the connection that it's something he needs to go do, even if he's not interested.  Does that make sense?  It barely does to me.

Everything has been a roller coaster lately.  I've been anxious and overly worried.  And I guess that's typical, whether or not your child is going through any of this.  I do feel a sense of peace after today though.  Because Davey is happy.  I measure success in life by happiness.  Davey is living a successful life as a 3 year old.  The rest of this stuff, the behaviors, the speech, it can be learned.  My dad said something to me (well several things) that really stuck : "Everybody has something".  And that's so true.  Charlie had her thing, she may have more things.  I've had anxiety and depression, my brother has OCD, I have friends who have a variety of medical issues - we all have something. 

With all of that said, I'm just thinking about how grateful I am.  It sounds weird, because we all want the best for our kids, but I'm kind of glad my kids have hit the big bumps in their road so early.  I want so badly for them to value life and enjoy life and understand that even though it's hard, it's also really, really fun.  And I feel like they've been so fortunate to learn that lesson so early. 

Don't let those hurdles knock you down, little soldiers.  Mommy's got you.

Thursday, September 27, 2012


From the minute I was wheeled out of the operating room after having Charlie and Davey, and being brought to the window to see them for the first time, the word "perfect" was all I could see, think and feel.  In two months exactly, the twins will be 3 and "perfect" is still the only word I have for these little birds.

It's been a hard week.  And I think we have some harder ones ahead.  I'm not sure what direction things will go and it's the not knowing that, for me, has been even more difficult.  I was never a control freak...until I had kids.  Now I live by a plan.  But you can't plan this kids growing up thing.  There's just curve balls right and left.

Over the last 2 years, we've gone through a lot with Charlie and it seems like it's all we talked about for awhile.  It may have seemed like Davey was overlooked.  Admittedly, we took advantage and enjoyed the fact that Davey has always been a relatively easy child.  He's had his moments.  Teething was so hard on him, though it never bothered Charlie.  He had a short spell of major tantrums soon after Charlie's surgeries were all over, which we attributed separation anxiety.  Davey's always been a quirky, sweet, head in the clouds, but also very focused child.  We've always known he was smarter than the average bear. 

When Davey went through that tantrum spell back in late July of last year, it was alarming to some and so I took him to our pediatrician.  I mentioned that along with the recent tantrums, he had some obsessive behaviors.  He tended to play with only certain color blocks and he liked to carry certain toys with him everywhere, never really letting them go no matter what. It was the first time he was screened for Autism.  Our doctor said, first of all, he was about 20 months old and that was generally far too early to worry about any sort of Autistic symptoms, but that Davey's behaviors seemed pretty normal.  They weren't like Charlie's, but that didn't make them something to worry about.  And at the kids two year checkup a few months later, both kids were screened for Autism because it's apparently routine at those checkups.

It was back in May that the question came up again, if Davey's behavior  Charlie was really starting to talk and communicate while Davey wasn't.  He was saying his alphabet and counting and saying a few other things here and there, but most of them were things he was repeating rather than asking for.  He's always been easily distracted but getting his attention seemed harder than it should be.  At the time, I wasn't concerned.  I just thought my kid was quirky.  I liked that he was quiet and mild mannered and so observant.  Still, the concern seemed to be genuine and came from family and so, despite my own feelings, I thought there was a possibility I was missing something.  I took Davey for his third Autism screening.  The pediatrician came back with the same results - Davey was fine.  He was just a super smart, kind of quiet kid.  He did mention that we could consider speech therapy for Davey because he was delayed, but that it was ultimately up to Joe and I.  Knowing that Davey was premature, a twin, AND a boy, we had anticipated some delays and decided to give it a little more time before pursuing anything. Not to mention, Charlie talks so much and it's non-stop.  So there's rarely a need for Davey to talk.  He was a happy kid and we felt like if wasn't broken, why fix it.

Here we are now.  We're two months from Charlie and Davey's 3rd birthday.  And Davey's speech hasn't improved.  I don't know that it's regressed more, but it hasn't gotten better.  I was starting to feel bad that my kid couldn't tell me what was bothering him or what he wanted.  So I called our pediatrician and went ahead with the referral to a speech therapist. 

Monday was our first meeting.  It was short and was just a chance for the therapists to get to know Davey a little and ask some questions.  I didn't leave the meeting feeling any sense of relief like I was hoping, I have to say.  While nothing was definitely said about Davey, other than him having a speech delay, the Autism subject did come back up.  It wasn't that he had it.  But it wasn't that he didn't.  Ultimately, a Behavior Specialist is really who determines that kind of thing.  Should Davey not show any real improvement over the next month or 2, the speech therapist said she'd recommend we take a meeting with the Behavior Specialist.  Which, to me, translates as "Good luck being a nervous wreck for the next month or 2 while you wait."

After every screening we had with Davey I've breathed a sigh of relief.  Everything's going to be ok.  But this feels so open ended.  And in an effort to get educated about speech delays, of course there's a lot of mention of Autism.  One in 88 children are diagnosed with Autism Spectrum Disorder.  And I find myself sifting through all of my friends on Facebook, counting every kid and wondering, is my kid the one in all of these kids?  Can I handle that?  Can we handle that?  Should I even be thinking about that?  I guess there's this little tiny thing inside of me that thinks this is a real possibility.  I could hear this dreaded diagnosis in the next 4 to 6 weeks.  And then what?  Of course any and everyone would say it's silly to worry about something that hasn't even happened yet.  But, ya know, how realistic is that?  How realistic is it for me to not spend some of this time worrying? 

Don't read things on the Internet, you guys.  No good can come from it.

At the moment, we're just dealing with a speech delay.  And it may be the only thing we have to deal with.  Davey likes to be held while you read to him and is such a smiley, happy kid.  He likes to race Charlie through the kitchen and shouts "On your mark, get set, GO!"  He's really into puzzles and cars and just recently graduated to a big kid bed.  He's also recently discovered how to open all the doors and that he's tall enough to control the lights being on or off. The power is going straight to his head.  His sweetness has never changed.  And if there's something more to what's going on with Davey, well, then, there just is.  I guess I can't too far ahead of myself.  Those lines of what's a disorder and what's just quirky behavior are SO THIN these days.  You can barely see them.

It's been such a hard week.  I've cried more times than I can count.  Just riding my bike on my normal route, listening to "Don't Stop Till You Get Enough" and boom - I'm crying.  I start to wonder if the people passing me in cars can tell I'm crying.  And then I start to think, "who cares".  When Davey repeats a word and uses it correctly, my heart skips a beat and I get this false sense of "Oh, ok!  He's in the clear!  He asked for an apple!" and then just as quickly as I think that, it takes me 50 tries to get him to say the next thing.  No matter what, this is hard.

But, ya know, Joe and I went through so much with Charlie.  It was so hard.  But at the same time, it made us strong.  It made us confident.  I'm a firm believer in things happening for a reason.  I have these scars on my arm from a car accident 7 years ago.  I used to hate them.  I hated wearing sleeveless shirts.  And when Charlie had her surgery and the doctor said, "She'll always have those scars!", I thought, "THAT'S why I have those scars of mine!  So Charlie will know you can grow up and have tons of friends and fall in love and have a family, even with big, visible scars."  And now I think, maybe Charlie's surgeries happened as a way to toughen us up.  Because here we are at our next challenge.  And trust me - speech therapy alone is a challenge.  It's constant talking and constant observing, all while Charlie is talking and answering all the questions I ask Davey before he gets a chance and watching Davey get frustrated that things aren't like they were just last week, and needing to cook and clean and sleep and shower and do those things I need to do.  It's a challenge.  But I know we've got it.  I know we can do it. 

It can be really hard sometimes.  It's really easy for friends and family to starting talking medical talk or giving more advice than I asked for, despite the fact that it's coming from the best place (I know that). I'm currently in a position where I just want to talk about it and hear "Davey is awesome.  And that's just that".  There are a lot of times that I feel like I can't talk to anyone.  Not that no one around me wants to listen.  But it's such a sensitive topic.  And I know I'm sensitive.  And if I'm afraid that I'll hear something I don't want to hear, I just won't talk about it.  And then I start to get that lonely feeling.  But I've started to find my small handful of people to talk to.  I'm really happy that Joe is one of those people.  We are a great team, that Joe and I.

I'm fried, I'm drained, and I just want to curl up in a ball and sleep it off.  All this worry.  It's taxing.  I started this blog so that people could read about the things we went through with Charlie and in hopes it would be helpful to parents with kids that were born with Charlie's condition or one similar.  And I started it for my parent friends to read and to know that we're all deep in stress and struggle.  We're all in this together.  It's weird to think I might pick this blog back up in hopes that I can be helpful to other parents with kids with speech delays and other possible disorders.  And I'm tearing up as I type this - I really, really hope we're all in this together.