Sunday, January 27, 2013

A Long Silence

(Warning: This is a long post.)

For a long time, my blog was my baby.  I was proud of what I had written and the way it allowed others to connect to me.  To have a peak into my crazy life without having to get messy themselves.  And then my life changed in what feels like a single lunch date with a friend.  After that, I began to travel a road that I didn’t feel comfortable sharing far and wide.  You see, I was fine at laughing at myself and laughing at my kids’ antics.  Sharing my own insecurities and failures.  All of that was fair game as far as I was concerned.  But real issues for my very real kids?  I wasn't so sure the world wide web was the place to be airing that particular bag of laundry.  But during a God-ordained lunch almost 3 years ago, pieces started falling into place in the puzzle that was my son Jake’s development…and everything changed. 

It seems like it was right around the time that Jake was born that autism became a major buzzword.  What is it? What causes it? Who has it?  Celebrities began to write books about their own children’s struggles.  Fingers were pointed at vaccinations and doctors.  There was lots of scrambling trying to figure out what was going on and what could be done to fix it.  I looked at my gorgeous baby boy and prayed to God that he would be spared from this.  I scrutinized his development, his interactions.  I talked to another young mom, a former teacher, who had studied and dealt with autism.  She assured me I had nothing to worry about.  My loveable son was in no danger.

So, when Jake took longer to babble then most babies do, I reminded myself that it wasn’t a contest.  When he finally started to babble at 9 months I breathed a sigh of relief and chided myself for being so silly.  And then other toddlers his age began to speak their first words.  I waited.  And waited. And waited for Jake to also begin using words.  As his ear infections raged on, I figured all that fluid must be preventing him from hearing properly, thus stunting his speech growth.    Finally, after many more months he could say a word or two and I again reminded myself all kids develop at different rates.  After all, Jake was SO physically capable.  It wasn’t that he couldn’t talk, it was that he had too much adventure in him to bother with words. 

I mentioned my concern, finally, to Jake’s pediatrician and she referred us to audiology for a hearing test and to ENT to discuss tubes.   After his tubes went in I thought, “This is it! Finally!! We are going to have a new kid on our hands.  One who talks in complete sentences and expresses his desires and wants using his vocabulary!”  Ah, but alas, it was not so.   And a referral was made to Tennessee Early Intervention Services.  People came to test him, he qualified for speech therapy and again I felt that all was going to be right with the world.  He just needed a bit of extra help.  What else could I expect from a kid who hadn’t heard properly for so much of his life. 

Jake made great strides with speech therapy.  It was exciting to see him put together a three word phrase (More fish, please!) as his therapist played silly games with him.  When Jake aged out of the program at 3 years old, my parents were so impressed with his progress they (and my grandparents) paid to keep him in therapy.  I kept waiting for it to all fall into place now that he could speak.  I thought play date offers would start rolling in and Jake would be the big man on the preschool campus.  I waited.  And waited.

Shortly after we moved here, I had my friend Lisa over for lunch one day after our boys finished preschool.  We sat and got to know one another and she shared that her son was on the autistic spectrum.  As she began to share more, I felt like the room started to spin.  Jake was one room over eating lunch under the dining room table so that no one would look at him.  I looked at Lisa and asked her, “How did you know?” And then the tears started to fall. 

That night, I called Ryan in Texas and told him we needed to have Jake evaluated.  That I thought he may be autistic.  Or have Aspergers.  Or PDD-NOS.  Or SPD. Of ADHD.  Or…..any of the other things I’d read in a frenzy during that afternoon’s naptime.   My husband was, as usual, calm and reassuring.  But this time I knew that I needed to keep some of my frenzy alive.  I needed to not be soothed into inertia but have just enough fear in me to keep my feet to the fire.

Thus began a very long process of appointments and referrals and appointments and phone calls and incorrect referrals and more phone calls and tears and insurance issues and…I could go on but let’s be honest, you want me to stop.   Many months later, we met with the developmental pediatrician to finally get our answer.   We had been back and forth to Chapel Hill many times by this point.  Had current and former teachers, as well as ourselves,  answer pages of questions.  Jake had been through evaluations and the near constant scrutiny of his parents (ok, parent, it was mostly me!).  And finally we were ready for an answer.  By this point I knew that there would be an answer.  I knew it wouldn’t be a smile and, “There is nothing wrong with your fine son.”  The more we delved into our concerns and talked through them with the team of professionals, the more we could see that many somethings were not right.  And so it was with a mixture of sadness and relief that the Dr. told us that she was going to give Jake the diagnosis of having an Autism Spectrum Disorder.

It wasn’t an easy call for her, we came to find out.  She had really struggled with whether or not it would be more or less beneficial to Jake to stick him with this label.  On one hand, he would, obviously, have a label (duh), but, on the other hand, this label would qualify him for an IEP (Individualized Education Plan) from school and open up a whole world of services to him.   In the end, she felt that the benefits outweighed the risks and we agreed with her. 

The Spectrum is really vast.  Two kids can both be labeled as “on the spectrum” and yet have almost no overlap in delays, issues, sensitivities, etc.  Two years later, I can say that I’m grateful she carefully weighed the decision and made the call to label. 

There is really  no end to stories to share.  Some are for laughter, some are stories of answered prayers and others are, in some way, a plea for more understanding and awareness for the children who don’t fit the mold.  

If you think you have room in your heart for a little more empathy and understanding, then please keep going on this journey with me.  I don’t have lots of (any!) answers but I have lots of stories, hopes, fears, answered prayers, lessons learned, and love for my dear boy.


Courtenay said...

Go Lacey Go! Thank you for the courage to write about what a real family looks like!!! PS-i owe you a coffee date

Anonymous said...

My brother had autism, at least that is what I'm sure his diagnosis would have been, but he died in 1990 before such evaluations were made. If he could have had help, if we had known, if.......he might still be here. Just love Jake.

Leslie Pigg said...

Lace, I so appreciate your honesty and your story. Thank you for sharing and thank you for continually being a mother we can all admire and want to emulate!! Much love to you and your precious boy. So glad you're blogging again. :)

vicduncan said...

I'm so glad you had the courage to write and look forward to your stories again. "There’s only one address anyone lives at and it’s always a duplex: Joy and pain always co-habit every season of life". Ann Voskamp

Richard Osman said...

Having walked through this with you, Lacey, mostly at a distance, I can attest to the honesty and accuracy of your account.
Even though we as a family have become much more comfortable (not sure that's the word) with acknowledging Jake's ASD, I still find it hard to tell most people. Not because I am ashamed or anything, but because I am pretty sure they will not understand. They will label Jake in their minds as The Rainman, or Max from Parenthood, and I immediately start doing the backstroke to explain how he is very far to the high end of the spectrum and all that.
ASD defies labels. As you point out, every case is different. I want people to know who Jake is: a wonderful, loving, intelligent, sensitive, insightful, funny little boy who has some quirks and issues, but don't we all? To deny that Jake needs some help would be to deny him the help he needs.
Lacey, you are very courageous to put this out there to the world. Love you.

Angie Eggleston said...

Lacey...knowing you and your family insures Jake a life of love and the greatest support system he will ever know...our prayers are with you all as you experience everyday with this precious Gift from Our Father...wishing you Peace, Love and His continued Joy...angie eggleston

Anonymous said...

Lacey, Thank you for sharing with us. You are a courageous, real Mom facing the challenges and needs of your family head-on. Bravo sweet Momma! I will commit to pray for Jake and your family as you tend to and nuture him. God's grace is always sufficient and HE is in control, especially when times are crazy. Jake and your other three beautiful children are so blessed to have wonderful, loving, God-fearing parents in you and Ryan. There is no better and more crucial foundation. God bless you all! Love you Lacey!
xox~ mjh

NotladyGaGa said...

I am so glad you posted this! Autism is a scary and painful diagnosis for families, primarily because there is so little quality, affordable professional help and treatment. And then there is the unknown risk to or loss of the expected future! All of the ASD children are totally lovable but many are lost because adequate diagnosis and treatment are unavailable or lacking, or very difficult to implement. Parents (with the primary burden usually falling on the mother) need to work hard to figure out what treatments work and how to get them. You and your family have done that and Jake has benefitted greatly. My grandson is also doing extremely well, although we also worry about the "quirks" that do sometimes appear and the non understanding public. And yet our families are so lucky, because speech and language has developed, education occurs in a regular classroom with some extra support and for the most part our kids are in the mainstream of life. So many other children on the spectrum are so very much more severe - never speaking, never toilet trained, frequent and severe meltdowns, in unending pain - literally lost to mainstream society. I pray daily that all of society soon recognizes what a social cost the multiple contributors to autism are, and of course what a tragedy the lack of affordable and adequate treatment is. I pray for understanding and support for the families, and I am always, ever so thankful for the many friends I and my family have who have reached out to us to help or to learn about autism.

~Lottie-Dah said...

Love you sweet friend-- good job!