Emotions

It really is remarkable how many conflicting emotions we have experienced over Matt's diagnosis.  For me it started with denial followed by deep grief over the loss of what MY hopes and dreams were for my child.  I worried that he would always be stuck in his own world and never have deep meaningful relationships with others outside of his own family.  This was mingled in with fear - will he ever be able to live independently?  I have so much uncertainty about what the future holds for him or our family.  Mingled in with these emotions was a deep sense of relief that we finally knew what was going on with our child and could understand him a little better, and help him be the best that he can be with what therapy is available at this point in time.

I am at the point now where I have accepted the diagnosis and have discovered a lot of joy in being able to relate to my son a whole lot better than I was before when I expected him to be "normal".  I am much more sensitive to his subtle cues than I ever was before.  We do have a lot of very hard days.  Days when he cries a huge portion of the day and can't tell us why in spite of our best efforts to break through to him.   Days when he hums or sings to himself all day and gives us zero eye contact.  Then suddenly, something will strike him as funny and his blue eyes look deep into mine and his whole face lights up in the most beautiful smile.  I love catching these glimpses into his world.  There is so much more to Matt than he lets on. 

Those who know me well, know that I am not prone to outward displays of emotion - Matt gets some of his introverted nature honestly - but sometimes I am caught off guard by somebody who is particularly kind and caring in their question of "how are you doing, really?"  These are the moments that I want to break down and cry right there.  I can't summarize all of my emotions, but the fact that they truly cared and wanted to know is enough to make my day.

My husband, Danny, is not prone to outward displays of emotion either.  I've known him for 10 years and can count on one hand the number of times I've seen him cry.  He is absolutely right in his statement that the label of autism doesn't change who Matt is, and it just helps us know what to do to help him.  Even he has been affected by some unexpected cycles of emotion though.  It hit him in the sports aisle at our local department store that Matt may never be able to play a game of catch with him.  That was when the tears came for him.

My son, Nathan, is 5 years old and has had a rough time figuring this all out.  We tried to explain what autism was to him, but it's difficult to explain to a 5 year old.  We told him that Matt's brain works a little differently, that he's a smart kid, but he just has a hard time with a lot of things that come easy to the rest of us.  At first Nathan thought that autism was contagious - he didn't want to sleep in their shared bedroom for fear that he would catch it.  He also wanted to know if you could die from autism.  This was heartbreaking to hear, but I gently explained to Nathan that autism is something you are born with, that is just means your brain works a little differently, and that no, people do not die of autism.  In a typical kid-like fashion, he rebounded from these emotions within minutes and was fine sharing a room with his brother again.

I've found him to be a lot more patient and protective of Matt than he used to be.  He also has a lot of pride in his voice when I hear him tell other kids that "my brother has autism, his brain works different".  One thing that really seems to have helped him is enrolling him as a "peer buddy" in the autism school that Matt is attending.  He is interacting with kids his own age with mild to severe autism, and seems to be a little better at understanding that different is okay.  He has one buddy at school who runs up to hug him whenever he sees him, and I've seen them walking hand in hand at school.  I really think Nathan is already an awesome brother to Matt and will only get better.  He actually fights more with his 7 month old precocious baby sister than he does with Matt!

Audrey will grow up accepting autism as a part of daily life; she won't know any different.  At 7 mos old she is always crawling over to Matt and joining him in whatever he is playing with.  I actually think it has been great for Matt to have a baby sister.  She clearly loves him, and it is much harder for him to retreat into his own world and perseverate on a task when baby sister is crawling all over him and stealing his toys.  He seems to have a very soft spot for her already.

There will be a lot of ups and downs with autism, but this happens with parenting anyway.  Right now the difficult days seem to outweigh the really good days, but I am confident that as we grow in our role as parents and as Matt gets the therapy he needs, that the balance will shift.  I feel incredibly blessed with the family I have been given and would not trade any one of my kids for the world!