Wednesday, April 8, 2009

They wrote a book about Ella

I really should be working instead of blogging, but I need your opinions. After 2 years of frustration & wondering what we did wrong as parents, Tyler and I finally decided to seek professional help for Ella. We started off by taking Ella to her doctor to see if anything was physically wrong with her. Everything was normal, she was healthy, and she didn’t seem abnormal to her doctor. I told him that I was very frustrated with a lot of her behaviors, and that I would like to get some proffessional help. He referred us to a behavior specialist. After the behavioral specialist observed her and did some play tests with her, she concluded it was possibly Aspergers and referred us to a Psychologist who specializes in Autism & Anxiety. The psychologist diagnosed her as having High Anxiety & Asperger’s Syndrome, saying that he had no doubt that these were the things that had been causing Tyler and I so much frustration over the years. Tyler and I were relieved to finally find out that it wasn’t all bad parenting (not that we are even close to perfect parents.) We were happy to finally get some help with some of our struggles, which include (but not limited) to: Two or more hours to get Ella dressed each day. Some days I can't even get her dressed at all. Hours of temper tantrums after preschool, or after playing with friends, or being at church, or most social activities, Refusing to come in our house from the garage after an outing while screaming as loud as possible for long periods of time, Out of control-on the floor-temper tantrums in public places, Nagging me obsessively to invite friends over to play, then when they come, spending half the time in her room trying to get her to come play, sleeping issues, potty training issues, and worse of all... Dinner Time! I’m not even going to try and explain that one to you. I know that it is typical of young kids to throw tantrums, and act naughty, however Ella’s “ritutals” happen on a daily & quite frequent basis. You can see why instead of being sad that our daughter was diagnosed, we were so happy to finally get some answers. We quickly signed up for a class on how to work through some of these problems. I bought a book called Aspergers Syndrome, as I read it, I felt as if they were writing this book specifically about Ella, down to the part about how these types of kids tend to have obsessions with Dinosaurs. Yes, they mentioned Dinosaurs specifically! Even my mom read a book on it, and mentioned how she also felt it described Ella.

So, here’s the problem. Tyler took Lily to a doctor's appointment today. The doctor mentioned to Tyler that he had gotten the Aspergers Diagnosis Certificate from the Psychologist, and thought that perhaps the Psychologist had made a wrong diagnosis. He wants us to get a 2nd opinion. So, do we spend hundreds of dollars (not to mention many hours) to have her re-evaluated? Only for them to confirm what the first Psychologist has told us? Or... am I so caught up in the fact that I might finally get help with my parenting issues, that I can't see that she has been mis-diagnosed? What would you do? Would you pay all that money twice? (Our insurance isn't the best since we are self employeed.) Just to make sure? What If I don't get her re-evaluated, and it ends up being that the first Psycologist was wrong? What would you do?

17 comments:

Mikie said...

My gut says that if the book and the information you have so far both describes her behavior and provides useful help for working through it, why get another diagnosis? I mean these terms are, after all, a way of describing something-- I hesitate to consider them anywhere close to an exact science. Anyways, I wouldn't consider the re-evaluation unless you really feel like nothing's helping (I mean did the doc even suggest alternative possible diagnoses or is he really just being inconsiderate of the time and money it will cost you?)

Lori said...

I too would keep with the first diagnosis. Is this 2nd doctor saying the first diagnosis is totally wrong? Or did he say that it is not quite right? I feel like the treatments for aspergers wouldn't hurt anyway. And could help ella. Those were my first thoughts.

Beth Choisez said...

Having been there myself, you raise great questions. I work with Dan and he sent you an email with my info. Please let me know if you would like to chat.

Princess Academy said...

Genewrally I'm a fan of multiple opinions BUT you know Holly Trust your instincts, in this case I think one is enough

Brian and April said...

This is absolutely the best book on autism out there. I'm glad that you read it. I'm glad you guys have a diagnosis, that can help a lot.
Was it your pediatrician that wanted you to have a second opinion? A Child Psychologist has a much better grasp on Autism than a pediatrician. If it was your pediatrician I would say you are much better off trusting your instincts and spending the thousands on getting her started on Behavior Therapy ASAP. It can work wonders. I would say try therapy for a while and if you don't see any improvement after a few months then maybe look at getting a second opinion.
If you have any questions about what to look for in a behavior therapy program or what costs are normal or any questions at all or just want to vent let me know I'm here.

Brian and April said...

Oh Also do you know what test they used to Diagnose Ella?

Shannon said...

Honestly I might get a second opinion so you don't question yourself however, what if the 2nd dr says something TOTALLY different then what???

Jen Paris said...

I haven't read all the comments people have left, so maybe someone already said this BUT, why don't you work with what you've got now, it will help, obviously, and then later if you feel like you guys need more/different help, THEN persue another opinion. I think you've come this far and should just get started rather than prolong what's alredy been going on for so long. Besides, think about Ella and how much happier she would be if she can get even a little help with her issues. Does your pediatrician say what else he thinks it might be? Same doc who said he thought everything was fine, right? I say go forward with the new information you have now. No time like the present. Good luck, and thanks for sharing. Hang in there.

The Call's said...

My opinion is that you stick with the 1st diagnosis. I think it can only help you guys to understan Ella, and for Ella to understand the world and how she needs to handle it. I think it is really up to you and Tyler though and how you guys feel about it. If it feels right.. try it. If it doesn't do anything for her, maybe then seek another opinion.

Laura Stringham said...

This is one of those situations that I think you just have to use your mom instincts. If you won't forgive yourself unless you get a second opinion, then get one. But if you are looking for validation because your gut tells you that this specialist is right, I'll be happy to give it to you. Your pediatrician isn't trained to identify those kinds of problems like a specialist, they don't live with Ella and if you think she's been diagnosed correctly, then I would just go with it. You can always take her to another specialist later if it turns out that you aren't making any progress. You're a good mom, you'll make the right choice.

Jami said...

I think the Psychologist is right in his diagnosis.... And the treatments can only help her. What does your pediatrician think it is? Besides you are the mom and you know her best... if the book makes sense and describes Ella then you should be able to make that determination. The Pediatrician doesn't know her like you do, and is not an expert!

Lisa said...

I would go with Mothers instinct! Mothers really do know best :D after all how much time does your pediatrician spend with Ella anyway? Seriously I doubt he has no idea about her condition since she is probably on her best behavior when she is there. I don't think you need a second opinion and would start therapy asap!
Good Luck :)

Brooke said...

Oh man Holly...I'm sorry! That situation really stinks. I think that I would honestly stick with the 1st diagnosis, especially if it seems to describe Ella to a T. If things don't seem right in a couple of months, then I would maybe think about getting a 2nd opinion.

gThurber03@aol.com said...

Holly, This is probably an opportunity for you and Tyler to learn and grow together for
Ella's sake...I am reminded how Faith in this kind of situation can only make us better. Read D&C 98: 1-4
Our prayers are with you and we put your names in the Temple.

kstrack said...

Hey Holly-

I believe you said she was starting school this fall. If you want to wait I am pretty sure through the school they can re-evaluate her. You may even just call the school she would be going to and talk to the principal, each county & school district are different but I do know there are LOTS of programs available. I would follow your gut but also explore other options that wouldn't have to come out of your pocket. I am pretty sure that even with the diagnosis the school would evaluate her to some extent.

Linda :) said...

We love Ella! She is so cute & I Love all the funny things she is always saying, she keeps me laughing! Hang in there Holly, you are a sweet, loving mom & doing a great job! : D

Megan said...

Wow! This is a pickle. As one who knows firsthand what a huge releif it is to have answers, I think you need to try and set that aside.

When I was diagnosed with narcolepsy, I naturally started devouring anything and everything narcolepsy related, saying 'yep, that's me' to everything. I think part of this had to do with my relief at finally having answers after years without any. However, after I let a little time go by, I realized that not all of the symptoms fit me to a tee. Yes, I definitely have narcolepsy, but no case is the same.

In other words, I know that it's easy to let the relief you feel at having answers feel like you've finally found your every answer. Before you go there, try and step back and make sure. Maybe take a second look at that book and see if there are parts that aren't as Ella as you had originally thought. If not, I would stick to the diagnosis. If so, you may want to ask for a second opinion.

I would also look at what kind of treatment is involved for this. If it's drugs, I would definitely get a second opinion. If it's more behavorial, maybe try the treatment and see how well it works (or doesn't work) before getting a second opinion.

Good luck to you and Tyler. You're obviously great parents for giving this so much thought and attention.