Sunday, April 20, 2008

A Lot to Learn

***Warning- long post filled with ramblings from the heart***


Boy, it's been a few days since I last posted.  Lydia's had some mysterious illness and it just seems like the kids have been more needy lately.  

Last weekend I was able to get away for the night for an annual "girls weekend away" with my sisters and my mom.  We had a great time filled with laughter and chocolate.  We spend most of our time scrapbooking or working on various crafts that we've had to put on hold.  I think my 3 sisters and my mom have all had some stressful past months in one way or another (although, who doesn't have some form of stress in their lives?) so it was a much needed break from reality. I wish we could do it more often.  Those girls mean the world to me.

Our latest news and a new learning curve for me comes in the form of a diagnosis for Lucas.  Since late last summer we have been concerned about some things we were seeing in his behavior and we noticed his speech was quite delayed.   Last week we took him to the developmental peds. office at the Children's hospital in our area.  We've been pursuing this appointment since last September.  In the past 4-6 weeks he has shown a lot of improvement in his speech and overall ability to cope with things.  What an encouragement!  I seriously considered canceling his appointment, but since it took so long to be seen I thought we should go just to play it safe.  I didn't want to have to play "the waiting game" again if I changed my mind and wanted to be seen again.

It was a long 4 hours for him (and me), but he handled it quite well.  For him, it was mostly play designed to observe his reactions, behavior, etc.  The diagnosis he has been given is PDD-NOS, which stands for Pervasive Developmental Disorder- Not Otherwise Specified.  The best way I know how to explain this is to create a word picture.  Picture PDD (different from PDD-NOS) as an umbrella.  What is covered under the umbrella is where Lucas' diagnosis is.  Under the umbrella is Autism, Aspergers, Fragile X, Retts Syndrome and PDD-NOS.  Long story short (kind of) is that PDD-NOS means Lucas has some of the characteristics of the pervasive developmental disorders, but not enough of them to characterize him as having one specific disorder.  A lot of parents feel like it's a blanket term to say "we don't know what's wrong with your child" and some feel like it's high functioning autism.  I still have a lot to learn so I'm not sure where I stand.  The psychologist said as he gets older he may fit better into the Asperger category.  Only time will tell.

I know as a parent this diagnosis brings a small amount of relief.  That may sound odd, but when your child has some autistic tendencies you begin to doubt yourself as a parent.  At least I do.  You begin to believe you are missing a piece of  the puzzle in parenting and your child is "different" because you are a poor parent.  Sometimes it feels like people think you have a "brat" when in reality your child is just having difficulty adjusting the way other kids do naturally.  Unfortunately, I do sometimes find myself avoiding "play dates" or social outings because I don't know how to help him interact appropriately with kids his age.  When he melts down I get embarrassed.    It's something I need to work on!

This diagnosis also brings some sadness.  We have the great news that he is above average intelligence.  He will function just fine in life, but he may always struggle with social connection  and OCD type behavior.  As a mom, I just don't want him to have to struggle in this way, but I'm hoping to be able to mold it to his advantage.

It's also difficult because Autism awareness has been increasing lately I feel like people think it's a fad diagnosis.  Sure, all kids probably exhibit some autistic behaviors from time to time, but when everyday is filled with these behaviors you begin to wonder.  I have felt opposition from people who are close to me and that hurts.  I don't want him to have a diagnosis to prove me right... I just want to be able to get him the help he needs.  It can be a lonely road.  I tend to question and doubt myself a lot.  

The bottom line is Lucas is still Lucas.  Loving.  Silly.  Smart.  Energetic.  Precious.  This doesn't change the way we feel about him.  We want to be his advocate and help him reach his full potential.  And what wonderful potential he has!  

9 comments:

philwing said...

you are such a wonderful mom with great instincts and you did exactly what you knew your son needed. lucas is so blessed to have you as the number one cheerleader in his life!!!

philwing said...

above comment from amber :)

jenny said...

Thanks for sharing your heart, Marisa. Praying for Lucas as he develops and for you as God reveals to you how to best meet his needs.

Stacie said...

I am so proud of you for doing the right thing for your son! We will praying for wisdom for you and Brian as you learn how to help him learn and grow into the man God created him to be.

lil'gurl said...

Hey Marisa--this is Carla. I will always be your cheerleader when you need one. Parents need support, too!
I have resources and contacts if you need any....I really am so proud of you for seeking help and being proactive. Praying for the Moores....

Jennifer said...

Marisa, I love you so much and your little sunshine boy! Praying for all of you!

Kim said...

Hi, this is Stacie's sister Kim. She sent me a link so I could see what was up with Lucas. I just want you to know I appreciate so much what you said and how much you obviously, love and want the best for your child. As a parent you need to go with your instincts and with where you think the Lord is leading and it really doesn't matter what anyone else thinks. It sounds like you guys are terrific parents dedicated to your kids and to raising them to love the Lord. Good for you! We will be praying for you as you figure this all out with Lucas.

Superhero Mom said...

Marisa, My name is Lisa and I found your blog while doing a search for blogs of parents with children who have PDD-NOS. One of my twin boys was diagnosed 4 years ago with PDD-NOS. He has made many wonderful strides and he still has many to overcome! I would love to invite you to check out my blog spot some time. I am hoping to be a source of encouragement as well as be encouraged by others along this journey. I haven't blogged much about Kyle's issues lately, he is just one of my 3 superheros (but the only one of my children with challenges). When I read your blog it sent me right back to 4 years ago when Kyle was diagnosed. You are not alone and I do believe that the Lord really knows what He is doing when he places children like ours in our lives! Be encouraged and be blessed! (That's my Kyle in my profile pic!) :)

Tyson Aschliman said...

Wow. This is powerfully challenging to me. We don't know each other-- you found "our story" through another blog, apparently, and I was just getting to know "your story" as a result of an encouraging comment you left us.

Anyway, I'm humbled by the peacefulness and sweetness of your life-outlook-- your focus on giving thanks and loving the blessings-- in the midst of what is such a difficult set of circumstances. My wife and I have stated many times in our "struggle", that "it could be worse-- this could be happening to TJ" (our 2-year-old). That is, we're basically saying, "Okay, God... we can deal with the suffering this life brings US... Even bring you 'glory' in the midst of it. Just don't mess with our kid." And here, it's so good to see your peaceful and deep love and compassion for Lucas-- the likes of which most other parents will never have the "privelege" of experiencing. May God bless your family in the midst of the hardships AND joys that will undoubtably face you, which are now perhaps more foresee-able, with this "diagnosis".