People have asked us how we knew something wasn’t quite right. Jack is still only 2 after all. Boys talk later than girls. He has an older sibling that does all the talking for him. My kid didn’t talk until they were 3 and then it all came out in a hurry. Every kid is on their own development track. We’ve heard it all and it’s all true. To be honest, we didn’t know that something wasn’t quite right. Jack developed completely on track until he was about 9 months old. He sat up, crawled, walked, babbled, and began saying a few words all at the right times. At 12 months he stalled out a bit. He was still doing all the wonderful baby babble and a few rudimentary words, but it really didn’t look a whole lot different than 3 months earlier. At the time, our (excellent) pediatrician told us it was certainly nothing to start worrying about but we definitely want to keep an eye on him and watch the development of his language. We weren’t looking for ____ words by the time he’s _____. We were looking for progress. By 15 months he had stopped babbling almost completely. His few words were gone. He was having tantrums that lasted for hours and would not be consoled. A bout of ear infections caused his pediatrician to become concerned that this could be impacting his hearing. Between 15 and 18 months some social concerns were bubbling to the surface as well. Jack was not making eye contact, not pointing, not bringing things to us that he was interested in, not pretending, not imitating. He was responding to his name so inconsistently we thought he couldn’t hear us. Lots of little things that by themselves might not have caused much alarm. But, as a whole, a bigger picture was starting to emerge. The first step was to clear a hearing problem. We had his hearing tested many times and after a few rough starts were able to eliminate this as the culprit. We called the Area Education Association for an evaluation. They came a couple of times a month at first, and when progress was not being noticed, they sent the Early Access Autism team over. He failed the M-CHAT twice, both by our parental interview and by the team’s interview. It was at one of these sessions I first heard the A-word and it was alarming. Wendi, our team leader, wanted me to be prepared to hear it if we planned to take Jack to the University for an evaluation so that I wouldn't feel blind-sided...and she also encouraged me that whatever we heard, there was no word that could measure Jack's potential and all the things he is capable of learning and doing. Still, I felt rocked to the core. That day after school, AJ and I went to the park with the kids, and when we were sitting down alone with Camille on a blanket between us, I told him what Wendi had shared with me. We sat there for a long time, holding hands, and just cried. We cried until AJ stood up and wiped his face and said, "I want to hold my son", whereupon he swooped up Jack, who was playing happily in the sand, onto his shoulders. It was one of those moments in life where it's not okay - but you know it's going to be. We started seeing the Autism Resource Team regularly then, 4 times a week, when Jack turned 2. I could sing unending praise of these people, but I will summarize: they are amazing and have saved our lives. 
This past July, Jack was diagnosed with Pervasive Development Disorder Not Otherwise Specified (PDD-NOS). You can certainly google PDD-NOS and get a zillion pages of information, but I think it’s overwhelming and not necessarily helpful. So I’m boiling it down here as a non-expert, with the information I’ve gathered and maybe even more importantly, the way we’re experiencing it. PDD-NOS is not autism...exactly. It is an autism spectrum disorder. See, aren’t you glad I cleared that up for you? What it means is that Jack exhibits multiple symptoms of autism without fitting precisely into the category of ‘autistic disorder’, because he doesn’t meet criteria in one of the three developmental areas of concern.. There are 5 sub-categories of autism spectrum disorder: Classical autism, Asperger’s syndrome, PDD-NOS, Rett’s Syndrome, and Childhood Disintegrative Disorder. Classical autism is diagnosed when there are developmental impairments in communication and social interaction, and when restricted repetitive or stereotyped patterns of behavior or interests are present. Jack has not been observed to exhibit restricted repetitive behavior (I would say some of these behavior patterns are present but not enough to be diagnostically significant). This, and I think the more qualitative fact that many of his symptoms are rather mild, excludes him from the category of classical autism. His language/communication delay excludes him from the category of Asperger’s. Rett’s syndrome and CDD are rare. Only females have Rett’s and a diagnosis of CDD means there is normal child development up until the age of at least 2, followed by rapid regression. This is not Jack. That leaves him in this broad “other” category, along with roughly half of all children on the autism spectrum. Some experts say there is a good chance that sub-category diagnoses will be abolished in the future, and all replaced with the more uniform Autism Spectrum Disorder (ASD). In my opinion, it’s more helpful to think of it this way. Especially given the fact that even in PDD-NOS or Asperger’s, which are thought to be the "milder" forms of autism, there are vast differences in level of functioning. Regardless of the specific diagnosis, the therapeutic approaches are much the same, and intervention strategies are designed to fit the particular child, since no one case is just like another. ASD more adequately encompasses the whole autism spectrum, from the high-functioning to the profoundly disabled.
I think parents everywhere can agree that a diagnosis or a “label” could never capture the essence of our children or tell us who they are. For AJ and I though, Jack’s diagnosis has been somewhat helpful as we learn to communicate what the specific challenges and needs are. And in a big way it has helped us make sense of some things about his development that have been confusing. We hope that knowing a little bit more about it is helpful to you too, our friends and family with whom we feel safe and known.
Here’s the “little t” truth: this is painful. I want my son to be happy, healthy, whole in every sense of the word. I want him to live freely and enjoy life. I want him to have every opportunity, have amazing meaningful friendships, never feel like an outsider, never have to be different in the ways nobody wants to be different. The world is hard on kids that don’t fit the bell curve. I see him struggling so hard to be understood, much harder than the typical two-and-a-half-year-old, and I worry about what could be looming ahead. It’s painful to AJ and I as a unit. Often we process what we’re seeing and feeling and hearing in different ways and it’s work to interpret each other. It sometimes goes badly. I cry. He cries. We start over. We keep pressing on towards a place we can land together, because we are both so in love with our little boy and we both feel helpless.
Here’s the “Big T” truth: Jack is a perfect gift from God. And it’s not just one of those cute things mothers say about their kids. I quite literally believe my son is perfect. My life is so much richer because he is in it. There isn’t even the smallest, quirkiest of his ways I would ever dare change. He is smart and engaging and loving. He is irresistible and draws attention to himself everywhere we go. He’s a scary-good problem solver. Ask anyone whose guardianship he has evaded. He loves movie sound effects and has an iron-trap memory for them. He’s destined to be a linebacker or a really big cross country runner...though the size of his rib cage leads me to believe he could make an equally fantastic brass instrument player. He loves to chase and be chased, tackle and be tackled, bounce and be bounced. He loves to be in front. Period. He plays with everything the “wrong” way. He hates wearing things that touch his wrists but insists his shoes must stay on. He spins in a circle when he hears music playing. He spins in a circle when he’s in front of a full-length window. He spins in a circle whenever he gets on an elevator. He can’t resist running a marked line or walking a stone wall (a million times) and he’s sure-footed as a Sherpa. He eats the entire apple whole, seeds and all, but spits out the skin as he goes. He makes the best guilty face when he comes sneaking out of his bedroom at nap time. And on and on and on...
Here’s what it all means for us: speech and behavioral therapy 4 times a week, lots of patience, lots of tears, celebrating the slow steady progress, re-framing expectations, rolling with the annoying comments made by less astute people at the grocery store/mall/pool/library/wherever else we’re brave enough to take him, sifting through services, preschool options, thinking ahead but not too far ahead, etc, etc...all while seeking higher education degrees, working, and maintaining some sort of connection to friends, family, and each other. It’s complicated.
Many of you have asked how you can offer your support. First and foremost we covet your prayers. This, I think, is gearing up to be one of those long life races. I don’t know how long. But we pray for Jack every day, as we do for Livvie and Camille, that he would be enfolded in the presence, mercy, love, and power of Jesus from now until. That God would continue to stir up the person he is made to be and that as his parents we would have the wisdom to nurture, honor, and protect him as he grows. Secondly, we love that you check in, understanding that some times we will want to share a lot and other times we may be able to say only a little. And thirdly, we appreciate your sensitivity to Jack. Some of you have asked how you should talk about him, if there are things you should say or shouldn’t say. The answer is, we love you. We know you love Jack (us). We trust you. If something feels not quite right we’ll say so, and we don’t expect any of this to be first-nature to any of us. We’ll all figure it out together as we go.When we reflect on what our life looks like, what the people in it mean to us, we taste and see the goodness of God. Strength for today. Bright hope for tomorrow. We have everything - Jack has everything. We don’t know where we are going yet, but we know we’re going with you, and we are so grateful. Thank you, thank you, faithful friends.
