Everything changed

Today I feel like everything changed for our family...and yet nothing is different.  

We have been blessed with a son who is our teacher--he teaches us patience, parental wrestling, to have cat-like-reflexes in order to protect our other children, ultimate child-proofing methods, to tolerate the worst poop disasters known to man, and a variety of other skills which have been painful to learn, quite literally as we have endured bumps and bruises at his hand (and foot...and fingernails...and noggin). However, he has also taught us some of the most important lessons in life--to love unconditionally, to refrain from judging, to look for the best in others, and (most importantly) to rejoice in the small victories. Thus, I decided it was time to start a blog--to give myself the extra motivation to look for the small victories (because we find what we are looking for) and a way to track them so I recognize the big, though sometimes gradual, miracles we are blessed to experience. So here we are.  

Now, this is a REALLY hard post for me to write because it requires total vulnerability and I crave control. Todd and I have been working for several years with doctors, specialists, therapists, and educators in an attempt to better understand our son, Matthew (who turns 5 in May). At about 15 months, we started to recognize some developmental delays and, as he got older, these delays became more and more apparent. At about 3 1/2, Matthew was diagnosed with Global Developmental delays, Sensory Processing Disorder (SPD), and, at almost 4, with developmental apraxia (a motor delay related to speech ). He has made only minor improvements in speech over the years, making his delay more pronounced as he gets older. In recent months, however, we have discovered some new therapies (REACH Family Institute), natural interventions (Dr. John Green), a fabulous new therapist (Building Bridges) and things feel like they have started rolling. We have been very encouraged and celebrating the series of small victories we have witnessed.  

As of late, however, we have been meeting with a new developmental pediatrician and, after several eval appointments, we sat with her earlier today for the "big reveal."  I was bracing myself, knowing in my heart exactly what she was going to say, but I was apparently still ill-prepared, evidenced by the fact that I am sitting in front of a computer while the whole house is asleep bawling my eyes out.  I've been praying my guts out for the last little while, but still can't quite seem to get a grip.  I feel like I lost something today.  

So, Matthew has ASD--Autism Spectrum Disorder.  It's a label that I have dreaded.  I have taken such hope in the fact that no clinician to date has felt to even dig into the possibility that he is autistic.  But this new lady, Dr. Alderman, specializes in this stuff and declared that he "passed with flying colors" (or failed with flying colors, depending on how you choose to look at it), meaning that he met most of the criteria for an ASD kiddo.  

Here is why I am struggling...this is supposedly a permanent diagnosis.  I can't talk myself logically out of the fact that Matthew will always struggle anymore.  Spiritually, I have not given up on the reassurances I have received about Matthew's future, but they are feeling a bit dulled at this particular moment. Also, this is a social disorder.  I am so sad to think of my sweet boy being the butt of people's ignorant jokes, being the kid that no one chooses as their friend because they don't "get" him, being someone that we always want to protect in public so that he doesn't do something inappropriate, being the boy who teachers struggle to relate to or have in class.  I want him to be loved....more than anything in this world.  I want people to love him like I do and see in him the beautiful spirit that is so clearly visible to me.  I don't want people to be blinded to those things because they can't see past his label.

Ironically, for the past two weeks, I have been studying about the idea that what we choose to focus on influences our behavior--in particular that we need to focus on the best in ourselves and others so that we, both consciously and unconsciously, treat ourselves and others as our Savior would.  As I was speaking to a group of young women the other day, I realized that, even though we had yet to meet with Dr. A, I had been practicing this idea all week with Matthew, knowing that she was likely going to give him a label I dreaded.  I caught myself watching his behaviors for signs that he was or wasn't autistic.  I also felt myself starting to see him through the lens of that label.  I think, in part, I was trying to wrap my head around the possibility.  However, I realized that I quickly started to let that overshadow the miracles we have seen as of late and almost dull the beauty of those things because I was dwelling on this dumb label.  I consciously made an effort to rejoice in every little thing Matthew did that was positive and push out thoughts of autism.  I think I did a good job and just felt so close to him and more patient than usual on a couple of tougher (behavior wise) days.  

Then last night, I spoke to a different group and the topic took a new direction--I focused on the power of self-talk.  I realize as I sit here tonight that I feel totally ill-prepared to raise a son with autism...and I'm beating myself up for it (negative self-talk).  The key point is that we have to actually replace the negative self-talk with positive rather than just pushing it out of our minds.  So I'm trying to remember that I have been RAISING a son with autism (and not totally sucking at it)--he isn't a different kid just because he now has a new label!  But I'm still feeling sorely lacking in the emotional strength department as I think more and more about his future.  I'm trying to re-wrap my head around the idea that what I focus on will influence my behavior and therefore influence who I (and Matthew) have the potential to become.  That talk--this topic--took on a whole new life for me tonight and, what I easily gave verbal testimony to yesterday and the day before, I'm really struggling to put into practice tonight.

But let me tell you what I know. I know that Matthew is a child of our Heavenly Father and he was given to us on purpose.  We were prepared for him and he for us.  Matt, who he is named after (Todd's amazing brother who has Down Syndrome), knew it.  We knew it (even though we didn't want to admit it) even before Matthew was born.  Sad to say, I had an impression and was scared even then--we almost didn't name him Matt because I was afraid it would become a self-fulfilling prophecy. Instead, it has become a gift and a comfort--glad we didn't listen to my fear.  

I also know that Matthew has been making INCREDIBLE strides over the last several weeks, as I mentioned earlier.  He is starting to say more words, his communicative intent is improving, his connection to us and others has blossomed, and he is just showing signs of being the bright kid we know he is.  None of that changes.  

Lastly, I know that Heavenly Father will make us (that includes me) equal to the task.  He will not let us fail.  He didn't send Matthew to us so we could mess it up.  He sent him to us because He knew we would help him reach his potential.  

I know all of this, but I am mourning a bit.  Give me 24 hours and a good night's rest and I'll be less weepy, I'm sure.  But I am grieving that we live in a world where labels have such power and that Matthew will change in the eyes of others because of this label.  I haven't talked to anyone about it today because I don't want them to know.  I almost want it to be a secret so that people don't see him differently.  However, as Todd said earlier when we heard the not-shocking news, it's great that we have something we can now be advocates for.  He has a better attitude than me.  I still just want to hug Matthew and cry. 

So there it is. My prayer is that, through this blog, I will be able to hold myself accountable for seeing Matthew for his potential and not through the lens of this label. The greatest gift we can give our children is to communicate their worth and potential so clearly they are inspired to see it in themselves (thank you SRC). That is the best gift I can give any of my kids....but especially my Matthew.